The Autism Crisis

Are autistic people lost in space?

2011-01-03T19:00:00.007-05:00

In one short paper, Elizabeth Pellicano and colleagues claim to demolish Simon Baron Cohen's systemizing account of autism. They also conclude that autistics' strong visual search and probabilistic learning abilities fail in large-scale space, ergo in the real world.

The press release starts by declaring that autistic children "lack visual skills required for independence" and does not exaggerate the claims in the paper, which merit a lot of scrutiny. So bear with me, this is not going to be short. First what they did (and didn't do), then what they found, then what it means.

1. What did they do? And what didn't they do?

Pellicano et al.'s purpose was to assess systemizing in autism by testing autistic visual search abilities in true-to-life large-scale space. And this research group has the set-up for it--a room-size visual search task. Except they ignored this possibility, instead choosing what they themselves call a test of "non-visually guided foraging."

In other words, Pellicano et al. do not include visual search tasks at any scale, so you can't draw conclusions from their paper about visual search abilities in autism.

From Figure 1, here is what Pellicano et al.'s foraging task looked like:

It took place in a 4m by 4m space arranged as shown. In two 20-trial blocks, 20 autistic and 20 nonautistic children (age ~11yrs) had to find which of 16 green floor lights, eight on each side of a midline, turned red when pressed. The children were not told that 80% of the concealed red targets were on one side of the room ("rich" side) with only 20% on the other ("sparse" side).

The task instruction was to find the red target as quickly as possible.

But search all you like, in this paper you will find no data about how quickly the participants found the targets. The researchers left out this available measure. They left out number of green lights hit before finding the red target. They left out how many first touches were on the "rich" vs "sparse" sides of the room.

They left out almost every measure they previously deemed important to assess performance on foraging tasks in large-scale space (e.g. here, here, here).

They seem also to overlook their previous systemizing-relevant (you would think) finding of no male-female difference in performance on the same foraging task (experiment 2 here).

Another of their own previous findings is that children's foraging performance is related to their performance on the Corsi block task, a measure of spatial memory. Autistic children don't necessarily show a deficit on this task (e.g. here), but in Pellicano et al., they did. If the goal wasn't simply to assess spatial memory, why not match groups on this ability?

2. What did they find?

Their main measure was sensitivity to probability in the foraging task which, ignoring their previous work, they defined as percent of visits to the rich side of the room. Here the authors report "no overall effect of group," never mind media reports (here is one). There was an effect for the first block of trials, where autistics visited the rich side for 45.50% of their touches vs 61.50% for nonautistics. In the 2nd block, the figures were 62.25% and 63.25%.

Two additional novel foraging measures involved total length of paths to the red target, per floor distance between green lights. These were assessed with highly sophisticated but conspicuously small-scale methods suited to eye-scanning and/or non-foraging pencil-and-paper tasks. So it doesn't matter how much time you take, or how much you have to twist and turn, or how many green lights you have to reach for. All that matters is length of path, and at this level the autistic children were judged significantly (a) less optimal and (b) less repetitive. Because you should ask, according to Pellicano et al., less repetitive means less systematic ergo is now yet another autistic deficit.

The final foraging measure was total revisits to green lights, where the autistics had significantly more in the second but not the first block. One autistic child racked up a big chunk of the autistic revisits (more than 3 SDs above the group mean), which might indicate an atypical understanding of or interest in aspects of the task. There is no information about group differences minus the interesting outlier.

The two non-foraging measures were the Corsi task where autistic children had a significant disadvantage, and an embedded figures task on which they performed significantly better than their controls (yes, interpreted as a global deficit, without evidence for same). Revisits--outlier included--correlated with the non-foraging measures in the autistic group. There is no information about these correlations for the nonautistic children or about any other correlations.

3. What does it mean?

Well first, it's an interesting task, even if it's not a visual search task.

But even if autistics totally failed (they didn't, and search all you want again, but you will find no rationale in this paper for the drop-off-a-cliff thresholds pushed by the authors), this task doesn't map easily onto the authors' sensational claims. These include that autistics can't find "shoes in the bedroom, apples in a supermarket, or a favourite animal at the zoo" ergo can't achieve independence.

Of course I want a whole lot more data, or an excellent rationale (none is provided) for not reporting most of it. And numerous possibilities were overlooked.

There's those other regularities in the distribution of red targets. There were only 40 trials, and each green light position was the target at least once. On the "sparse" side, each position would be the target exactly once (8 targets, 8 positions). The participants were not supposed to notice or be affected by this kind of regularity.

No one knows how autistics would have performed if given accurate task instructions (to take the shortest path, as measured by the authors, to the target). Maybe someone else can bring up motor differences, which plausibly are relevant to this "true-to-life" task. And I wonder how clear, for autistics, the task instructions were with respect to revisits.

Autistics should be notorious by now for noticing aspects of tasks that nonautistics don't (fantastic example at IMFAR last year), and for exploring more possibilities than nonautistics (examples here and here). Writing this off as a bad thing, as autistics being lost in space or some dire equivalent, is shortsighted to say the least.

If you're paying attention, autistics' "less repetitive" and speculatively more exploratory behavior--more aspects of the array are interesting to autistics, more possibilities and probabilities are explored--in "large-scale" space is a predictable finding. There is no reason to trash as useless (or harmful, and Pellicano et al. go there) multiple replications of excellent autistic visual search and probabilistic learning performance. One genuine conclusion is that systemizing, as conceived by Pellicano et al., and also by Baron-Cohen, is too rigid and limited a model to encompass how autistics atypically detect and explore environmental regularities.

Reference:

Pellicano E, Smith AD, Cristino F, Hood BM, Briscoe J, & Gilchrist ID (2010). Children with autism are neither systematic nor optimal foragers. Proceedings of the National Academy of Sciences of the United States of America PMID: 21173235

Postscript: You can find a large-scale space, true-to-life, real-world (and wonderful) embedded figures task performed by an autistic child here.

Post-postscript: This post has been included in the 83rd edition of Encephalon.

Questions about higher education in the era of autism politics

2011-01-03T10:19:00.006-05:00

Strange way to start the year. And maybe this recent search from the University of Southampton is actually unrelated to the university. On the other hand, in the current era of autism politics, it seems plausible to wonder whether this is part of someone's assignment or coursework or whatever.

And if it is, is the question being asked about all autism researchers, or only autistic ones?

Are autistic people natural born criminals?

2010-10-10T19:54:00.014-05:00

Associations between autism and notorious violent crimes are easy to find--they seem almost automatic. Here is one example, and another, and one more. There seems to be an entire book on this theme, though I haven't read it.

In the scientific literature, you can find powerful deficit models of autism at work in predictions that autistics should disproportionately be violent and prone to criminal behavior. For decades now, examples and claims (just a few here, here, here, here) fitting this prediction have been highlighted, while the few dissenting views (e.g. here and here) have had little effect.

Then there's political expedience. Unless we receive the usual lobbied-for interventions, autistics will disproportionately display criminal behavior and wind up in jail--or so it is claimed. A few examples from the usual autism politics here, here, here.

Kathrin Hippler and her colleagues deserve high praise for noticing how well-placed they were to investigate these kinds of popular claims. Their recent paper takes advantage of their access to information about the large group of individuals--177 of them--who are former patients from Hans Asperger's clinical practice in Vienna.

Most (93%) of these former patients are male. All were assumed to score at least in the normal range of intelligence as children, but for most there are no recorded IQ scores. They were born between 1938 and 1979, and on average were diagnosed at age eight (range 3-21 years). In 2010 their average age would be about 50. It is unlikely that most of this cohort would have undergone the usual lobbied-for autism interventions as children.

Hippler et al. obtained information from the Austrian Penal Register about all criminal convictions registered, as of 2002, in this cohort. They found 33 convictions for a total of 8 individuals, resulting in 23 "custodial sentences" ranging from 2-30 months and 11 fines.

They also checked whether, compared to the general population, their cohort had a higher rate of newly-registered convictions for the years 1998-2002. Here is what they found:

the average proportion of convictions found in our sample (1.30%) is very comparable to that in the general male population (1.25%)

As to kinds of crimes:

By far the most common convictions in Asperger’s former patients were for property offences [...] Offences against life and physical integrity were rare.

And while data for the general population were limited:

qualitative assessment of offence types in Asperger’s former patients suggests that they do not differ radically from those in the general public

Because this point needs to be underlined, here is more from Hippler et al.'s discussion:

the findings from our study do not suggest an over-representation of certain offence types. In the case records spanning 22 years and 33 convictions, there were only three cases of bodily injury, one case of robbery and one case of violent and threatening behaviour.

Again to their great credit, Hippler et al. also provide data broken down according to Asperger's system of diagnosis. The 177 former patients were divided into an AP group ("autistic psychopathology," N = 73) and an AF group ("features of autistic psychopathology," N = 104).

Some guesswork is involved, but the AP group would fall under current criteria either for Asperger syndrome or the specific diagnosis of autism. Hippler et al. conservatively estimate one-third would be specific-autistic, but it's not difficult to find researchers who would guess a higher proportion (here, for example).

While a minority of the AF group might meet Asperger syndrome criteria, according to Hippler et al., others might be PDD-NOS, or in the (nonautistic) broader autistic phenotype. The AFs are described as "former patients at the less extreme end of the spectrum" and were included by Hippler et al. because:

Asperger believed that ‘autistic psychopathy’ was a heritable condition blending into "normality", which is reflected in the case descriptions of these children in the sense that the core features were the same but symptoms were less severe or could be compensated for better.

According to near-universal assumptions, it would be far better to be AF (less "severe" or "extreme") than AP. Transforming AP-types into AF-types is a major goal of the usual lobbied-for autism interventions. But Hippler et al. found that most of the registered criminal convictions in their cohort belonged not to the "more autistic" AP group but to the "less autistic or not autistic at all" AF group.

Indeed, of the 33 convictions found registered as of 2002, only three convictions of two individuals were found in the AP group. The remaining 30 belong to six individuals in the AF group, with two in this group contributing 22 convictions.

In the comparison with rates of newly-registered convictions in the general population, the AP rate was 0.6% while the AF rate was 1.7%. These figures are lower and higher, respectively, than for the general male population, while the AP rate is comparable to the general population, females included (0.7%).

Hippler et al. provide a competent overview of the relevant literature (including this recent finding), as well as a fair discussion of their study's limitations. Under the banner "Wider Implications," they write:

There is a public perception that individuals with mental health diagnoses in general, and Asperger’s syndrome in particular, present a threat to the general public. We contend that, based on the follow-up data from Asperger’s original cohort, as well as other studies, this perception is wrong.

Even wider implications include the neglected question of how being regarded as just naturally violent and dangerous to others, as natural born criminals, has affected the outcomes of autistics.

Reference:

Hippler, K., Viding, E., Klicpera, C., & Happé, F. (2009). Brief Report: No Increase in Criminal Convictions in Hans Asperger’s Original Cohort Journal of Autism and Developmental Disorders, 40 (6), 774-780 DOI: 10.1007/s10803-009-0917-y

Postscript: This post has been included in the 43rd edition of Scientia Pro Publica.

Are you high or low functioning? Examples from autism research

2010-08-31T17:43:00.006-05:00

If you are autistic and ever venture or are pushed into public, a near-certainty is that you will publicly be ranked and classified by total strangers.

For example, you will be assigned to the "high end" or the "low end" of the autistic spectrum, according to whether you are claimed to have a good or bad outcome (I've been claimed to have both). Non-political observers may notice how ethically and scientifically problematic this is, but there are few discussions, formal or informal, in which autistics aren't automatically assigned "high-functioning" and "low-functioning" rankings as definitive and permanent aspects of ourselves: there are LFAs and then there are HFAs.

If the whole area of autism were not so politicized, it might have long been seen as important to check the scientific basis for these ubiquitous rankings. It might even be seen as an ethical obligation. It might be noticed that there is something wrong with discarding and therefore dishonouring the contributions to research made by the countless autistic children and adults who have been recruited as participants in autism research, and without whom there would be no autism research at all.

I've never been impressed by autism politics, on whatever "side," so I'll start with some basic information about levels of functioning as reported in autism research, then provide several examples pulled from some of the numerous papers I've recently looked at.

What does level of functioning mean in autism research?

In autism research, autistics' level of functioning is most often judged according to scores on specific tests of IQ (e.g., Wechsler) or developmental level (Mullen, Bayley, sometimes the Vineland) at a specific time.

The reported threshold dividing "high" from "low" functioning ranges from 50 to 90--at least in papers I've read so far; the actual range might be even greater. Those are IQ or IQ-type scores with a mean of 100 and a standard deviation of 15. So the threshold, the line dividing "high" from "low" functioning in autism research, is almost three SDs wide. Fall into that impressive span, and you may be high or you may be low functioning, depending on who you ask.

If 90 is the threshold, then about 25% of the entire population (autistic, nonautistic, everyone) is low-functioning. If the more common threshold of 85 is chosen, then about 16% of everyone is low-functioning.

70 is the threshold often considered to be standard even if in reality, if you read the literature, the threshold varies dramatically. But there are different tests and within commonly-used tests there are different ways to set a threshold, even when the threshold is numerically set at 70.

With this in mind, here are some examples.

Example 1

In Farley et al. (2010) the threshold is indeed 70 and autistics with lower baseline (circa age 8yrs) IQs were excluded. As the authors write, "all participants had baseline IQs in the nonimpaired range."

In fact the full-scale baseline IQs of autistics deemed to meet the 70 threshold, and included as participants, range down to 36. An IQ of 36 is near the current threshold for severe intellectual disability. An IQ of 36 (if you were under age ~4yrs) would exclude you from Ivar Lovaas' famous ABA study--you are too low-functioning.

But in different circumstances, which are specified by Farley et al., a full-scale IQ of 36 can also be considered to grossly underestimate your abilities and to put you in a study of participants who would widely be ranked as high-functioning.

Example 2

Klin et al. (2007) is another study where the autistic participants (ages 7-18yrs) are all considered high-functioning and the threshold is 70. In one of two samples, verbal, performance, and full-scale IQs run from 52 to 150. Then there are Vineland scores. While Vineland is a test of adaptive behavior, in autism research Vineland scores can also be used as measures of intelligence ergo level of functioning.

Vineland composite scores in this sample range down to 25. Two of the Vineland domain scores range down to 20. In a recent population-based study (ages 9-14yrs), an assigned Vineland score of 19 was used to represent profound intellectual disability. But in Klin et al., you can have a Vineland composite score of 25, or Vineland domain scores of 20, and you are high-functioning. You are in the same category as someone with a verbal IQ of 150.

Example 3

In Akshoomoff et al. (2004), there is also a threshold of 70, but autistics falling on either side of this threshold are included then divided into lower and higher functioning groups. Performance IQ scores in the lower-functioning group range up to 128. That is not only higher than the individual scores of the entire higher-functioning group, it is higher than all but ~3% of the entire population. If a PIQ of 128 ranks you as low-functioning, as it does in Akshoomoff et al., then almost everyone is low-functioning.

Example 4

In view of the above it might seem wise to abandon the 70 threshold and try something completely different. Annaz et al. (2009) created high-functioning and low-functioning autism groups (ages 5-11yrs) by incorrectly using the CARS (Childhood Autism Rating Scale), which is supposed to be a measure of autism "severity." This study features two measures of intelligence, one verbal (British Picture Vocabulary Scale, a verbal IQ equivalent) and one non-verbal (a subtest from the British Ability Scales).

One result is that you can have a verbal IQ of 62 and be classified as high-functioning, and a verbal IQ of 111 and be classified as low-functioning.

The non-verbal measure is reported in age-equivalents only, but the two autistic groups are remarkably well-matched on age. And the mean non-verbal age equivalents are both (1) the same for the two autistic groups, and (2) very nearly the same as mean chronological age, again for the two autistic groups.

In other words, another result is that both high- and low-functioning autistics here represent groups whose mean measured non-verbal intelligence is the same as the general population mean, and of course vice-versa. Setting aside possible differences in distribution, now everyone is both high- and low-functioning.

Conditional examples 5 and 6

This is a bit of a digression, but if you adhere to the common political or ideological prejudice that "Kanner's autism" is "classical autism" is "low-functioning autism" you are then required to achieve an IQ of over 140 (from Kanner's original 11) or 150 (from Kanner's 1956 follow-up) to be ranked as high-functioning. That means you have to be better than the 99th percentile.

Now what?

The above doesn't nearly convey the arbitrariness in the existing autism literature. As I wrote, I've provided just a bunch of examples, among many others, you will find if you read a lot of papers. Also, I've left out entire major areas, like changes over time and results from deliberate comparisons between different tests of intelligence.

While this was not intentional, the examples above might be construed as exploiting the atypically high variability characterizing individual autistics and in addition characterizing autistics as a group. Then the question is whether it serves the interests of autistics, and whether it advances autism research, to diminish, misrepresent, trivialize, denigrate, obscure, or deny this characteristic variability.

And as usual, the above can be verified by reading the existing autism literature. If there are any factual errors, as is always possible, please let me know.

Futher reading

The late Ivar Lovaas expressed his views about levels of functioning in autism in one of the major ABA manuals; this is quoted here. From a different point of view, this article concisely applies ethical consideration to the issue of level of functioning, among others. In autism politics, the dimension of autism "severity" and the different dimension of "level of functioning" are often wrongly confused or conflated. You can find science-based information about autism "severity" here and here.

References:

Akshoomoff N, Lord C, Lincoln AJ, Courchesne RY, Carper RA, Townsend J, & Courchesne E (2004). Outcome classification of preschool children with autism spectrum disorders using MRI brain measures. Journal of the American Academy of Child and Adolescent Psychiatry, 43 (3), 349-57 PMID: 15076269

Annaz D, Karmiloff-Smith A, Johnson MH, & Thomas MS (2009). A cross-syndrome study of the development of holistic face recognition in children with autism, Down syndrome, and Williams syndrome. Journal of experimental child psychology, 102 (4), 456-86 PMID: 19193384

Farley MA, McMahon WM, Fombonne E, Jenson WR, Miller J, Gardner M, Block H, Pingree CB, Ritvo ER, Ritvo RA, & Coon H (2009). Twenty-year outcome for individuals with autism and average or near-average cognitive abilities. Autism research : official journal of the International Society for Autism Research, 2 (2), 109-18 PMID: 19455645

Klin A, Saulnier CA, Sparrow SS, Cicchetti DV, Volkmar FR, & Lord C (2007). Social and communication abilities and disabilities in higher functioning individuals with autism spectrum disorders: the Vineland and the ADOS. Journal of autism and developmental disorders, 37 (4), 748-59 PMID: 17146708

Postscript: This post has been included in the 40th edition of Scientia Pro Publica.

Making autism research history: The Preschool Autism Communication Trial

2010-08-18T20:04:00.009-05:00

Some months ago, Jonathan Green and his colleagues simultaneously published (in the Lancet) and presented (at IMFAR 2010) their multi-site RCT of an early autism intervention. In conducting and reporting the Preschool Autism Communication Trial, they have made autism research history. They have done so simply by applying to autistics scientific standards that are well-established in non-autism non-ABA areas. The upshot is an autism early intervention trial whose results are worth serious consideration and which is unprecedented in this respect.

Via the PACT website, you can find the Lancet paper reporting the PACT RCT, the peer-reviewed PACT intervention "manual" (which refers to another, more detailed manual), the PACT RCT protocols, references for related papers including a 2004 pilot RCT, a list of investigators and funders, and so on.

I've previously written about the PACT as an anomaly in autism intervention research. The PACT entails an early autism intervention that was not widely promoted as effective or essential before it was fairly tested. That is a first in the history of autism research. It may also be the largest RCT of any kind of autism intervention ever published (if I'm wrong, I'm sure someone will tell me).

In short the PACT RCT is an internationally-registered multi-site trial of a manualized intervention targeting the parents of preschool (ages 2-5yrs) autistic children. The PACT intervention spans one year and involves 12 twice-monthly 2hr clinic-based sessions followed by 6 monthly sessions. Parents are expected to apply what they learn, in interacting with their autistic child, for half an hour per day.

For the PACT RCT, 152 children who met criteria for the specific diagnosis of autism were randomly assigned to receive either the PACT intervention plus treatment as usual or TAU alone. PACT and TAU children were well-matched at intake across several measures, and finished well-matched in other treatments received. Parents were not as well-matched. A detailed description of the PACT intervention is here.

Dr Green and colleagues were successful both in recruiting an unprecedentedly large number of preschool autistic children for an RCT--in fact, expectations for recruitment were exceeded--and in minimizing drop-outs. In the Lancet, you will find an outstandingly clear CONSORT flowchart of participants as well as an intention to treat analysis and mixed results.

Results favouring the PACT group were mainly in the area of parent-child interaction, as assessed through videos. The PACT group also outperformed the TAU children in parent-reported vocabulary and social measures, results carefully downplayed by Green et al. due to the parents not being blinded to intervention status. Post-treatment-only measures of adaptive behaviour reported by teachers did not differ between groups.

The main measure was the ADOS used as a scale, and here too there was no result. In my view, using the ADOS as the main measure is a major error but an informative one. The ADOS, as used here (awkward tweaks and all), has thresholds only and doesn't work like a scale. And where is the evidence that lower ADOS scores in very young autistic children in themselves lead to better eventual outcomes? On the other hand, the strong design of the PACT RCT is such that it calls into question what exactly the ADOS is assessing--a result which deserves a lot of attention.

Using ADOS thresholds, 27% of the 146 children who completed their assigned treatment had migrated from the specific diagnosis of autism to the lower-threshold "ASD" category, while an additional 6% no longer met criteria for any autistic spectrum diagnosis. No group differences were found. These findings lend perspective to the widely-publicized diagnostic category results from another recent RCT involving a small sample of much younger children receiving more than two years of intervention.

As with all studies, it's possible to list a range of flaws, potential concerns, and caveats. The ADOS is not only wrongly used as a measure, it is incorrectly used to stratify the sample for randomization. The ADI-R is used in a slightly unconventional way, possibly to accommodate children who otherwise would be excluded by its limitations. There was no screening ergo no exclusion for genetic syndromes, which arguably makes the findings more difficult to interpret. There was poor agreement between raters for two of the three parent-child interaction measures, which in my view is fascinating and telling: nonautistic raters are not good at agreeing about what child initiation and shared attention consist of, when a child is autistic. If you look at the Lancet paper, depending on how your brain works, you should rapidly find at least one minor error in the data (I can't help it...).

The PACT intervention itself has questionable aspects. The fundamental idea is sound: train parents to better respond to their autistic children's communication. But the PACT is a rigidly developmental six-step approach based on how nonautistics develop. In addition, and like so many other autism interventions, the PACT imposes extreme rationing of information and materials. Everything is cleared and shut away except a few toys or items. Anything in which autistics regardless manage to show strong interest will be taken away and replaced with something less interesting. What this does to an autistic child's communication and learning is not considered. The PACT explicitly requires every effort to identify and cater to the parents' different ways of learning, but no such consideration is extended to the autistic children.

The above is a not-close-to-complete list of the PACT's strengths, many of them unique, and its weaknesses--which due to its strengths serve as important information for the future of autism intervention research. Because the trial is so strongly designed compared to the rest of the literature, it is that much more important to learn from and build on. This may not serve the interests of various lobby groups or service providers or political leaders or advocates, but it will serve the interests of autistics. Here is a suggestion from Dr Green and colleagues in the Lancet:

These findings suggest that the optimistic results from other studies should be reassessed.

Yes--good experimental design means that you risk not having your biases confirmed. But taking this risk is currently the only demonstrated way to fairly test interventions and treatments, and for this reason, the only way to conduct ethical research.

There is a Lancet editorial about the PACT RCT, written by two NIH scientists. Here is one thing they point out:

Thus, in a field in which minimum study standards have made it difficult to even look for literature to answer what works for autism, this study is an achievement.

Here is another, and they get the last word:

This study furthers the field by setting a new bar for the minimum standards of rigorous methodology needed in trials that have potentially far-reaching service and policy implications.

References:

Green, J., Charman, T., McConachie, H., Aldred, C., Slonims, V., Howlin, P., Le Couteur, A., Leadbitter, K., Hudry, K., & Byford, S. (2010). Parent-mediated communication-focused treatment in children with autism (PACT): a randomised controlled trial The Lancet, 375 (9732), 2152-2160 DOI: 10.1016/S0140-6736(10)60587-9

Spence, S., & Thurm, A. (2010). Testing autism interventions: trials and tribulations The Lancet, 375 (9732), 2124-2125 DOI: 10.1016/S0140-6736(10)60757-X

The circadian prison

2010-05-17T12:30:00.007-05:00

I had no idea my sleep-wake cycle was pathological until I saw a presentation a few years ago by the geneticist Thomas Bourgeron. One of his interests is clock genes in autism. In fact only by speaking with him did it dawn on me that I lack a circadian rhythm.

As it turns out, autistics are considered to have circadian clocks "gone bad." Two reviews (Bourgeron, 2007; Glickman, 2010) cover the evidence with respect to autism and circadian rhythms, most of it in the direction of comprehensive atypicalities. Glickman (2010) summarizes the problem:

Disturbed sleep-wake patterns and abnormal hormone profiles in children with autism suggest an underlying impairment of the circadian timing system.

And autistic children's bad timing, when it comes to sleeping and waking, is considered disruptive or worse, both to themselves and their sleep-deprived families. Bourgeron (2007) raises the further concern that typical sleep-wake patterns are essential for "appropriate" development, for the functioning of memory, and so on. Apparently there is nothing good about autistics' bad circadian clocks.

Autistics whose sleep-wake cycles carry on independently from environmental and social cues are said to be "freerunning." My form of freerunning is extreme. I can sleep whenever I want--a few hours here, twelve hours there, as necessary, no matter the time of day or night. I enjoy sunlight but its absence has no effect on my mood, or on my sleep. I can work through nights, no problem, and shift to days in a blink. I've never suffered through jet lag. And so on. Until I ran into Bourgeron I had no idea this was considered pathological, at least in an autistic.

The usual response to freerunning in autism is to see this as an autism-related sleep disorder. There is very preliminary evidence that freerunning autistics can be successfully treated with melatonin. Bourgeron (2007) refers to a short case study about an autistic whose free-running was remediated by melatonin treatment.

Of course nonautistics take melatonin too. They put themselves through sleep hygiene routines and they go to sleep clinics in droves. They suffer terribly from shift work and jet lag, and inadequate efforts to eradicate this suffering are everywhere, from new drugs to new iPhone apps.

There is an enormous market for products and services that can treat individuals who stray from the proper expected sleep-wake cycle. Remarkably, the goal is never to free people from their circadian prisons but to return them there and keep them there. The schedule may be changed, with effort, but the prison remains the same.

The next time I spoke with Bourgeron, I told him there should be a sort of anti-melatonin which would allow people to freerun like me, ergo avoiding the ills of jet lag, shift work, and what-all. It seems possible no one has seriously thought of this.

I suggested the anti-melatonin idea to some nonautistic colleagues. They burst into stories about destroyed careers, disrupted lives. In constrast with autistics like me, my colleagues have perfectly "good" circadian clocks--which turn out to be incompatible with their challenging lives. They suffered, for being normally chained to their normal circadian rhythms.

If there was a pill that could give them my very dysfunctional clock so they could freerun to the extreme, they would buy it in bulk. But there isn't. Instead there is the assumption that everyone has to live in a circadian prison.

Glickman (2010) speculates that some autistics' failure to chain our sleep-wake cycles to environmental cues (you can find information about entrainment, as this process is called, here) may arise from our atypical perception. My totally wild guess might be that an extreme freerunning phenotype in autism may be contributed to in part by cognitive versatility in autism, which would result in perceived environmental cues affecting sleep-wake cycles in an optional rather than mandatory way.

The renowned Bora Zivkovic, who unlike me knows all about circadian clocks, recently wrote that--unlike me--typical people have "have complex circadian systems that are easy to get out of whack" with dire consequences:

In the state of almost permanent jet-lag that many of us live in, a lot of things go wrong. We get sleeping disorders, eating disorders, obesity, compromised immunity leading to cancer, problems with reproduction, increase in psychiatric problems, the Seasonal Affective Disorder, prevalence of stomach ulcers and breast cancer in night-shift nurses, etc.

BoraZ was writing enviously about reindeer who live with drastic changes of season yet have escaped this kind of misery, possibly by having a "low-amplitude" clock. They just stroll out of their circadian prisons, whenever it's adapative. How can poor suffering human beings do this, is the question--finally. It's a very good question.

References:

Bourgeron, T. (2007). The Possible Interplay of Synaptic and Clock Genes in Autism Spectrum Disorders Cold Spring Harbor Symposia on Quantitative Biology, 72 (1), 645-654 DOI: 10.1101/sqb.2007.72.020

Glickman, G. (2010). Circadian rhythms and sleep in children with autism Neuroscience & Biobehavioral Reviews, 34 (5), 755-768 DOI: 10.1016/j.neubiorev.2009.11.017

Postscript: This post has been included in the 32nd edition of Scientia Pro Publica.

Oxytocin versus autism: A cure for altruism

2010-02-17T14:02:00.008-05:00

The widespread message arising from Andari et al. (in press) is that the hormone oxytocin "may be a powerful weapon in fighting autism" or words to that effect.

The heart of this study is a computer game version of catch which appears to involve four human players. When a player is thrown the ball, he must then throw it to another player of his choice. Every time a player receives the ball, he receives a bit of money.

In Andari et al. (in press), small groups of autistic and nonautistic adults ("P") individually play this game with three strangers ("A" "B" "C"). Much is done to persuade the autistic and nonautistic participants that the strangers, who in fact are elaborately programmed, are actual, present, proximate (in adjacent booths), decision-making human beings.

The three strangers start by equally distributing the ball to the other players. Then the elaborate program kicks in: A and C increasingly favour one player (P and B, respectively) while shunning the others. B's behaviour does not change.

In a prototypical display of us-vs-them thinking, the nonautistic Ps responded by ganging up with A to reap the social and monetary gains of a close alliance founded on the exclusion of half the players.

The autistic Ps in contrast displayed no such selfish and discriminatory behaviour. They continued to throw the ball to the other players in equal proportion, ignoring their self-interest in favour of keeping all players equally included.

Further, subjective ratings of the other players revealed that the autistic Ps did not have the kinds of biases that are routinely called hypocrisy. They did not judge C, who shared the most with B, as worse or less trustworthy than A, who shared the most with themselves.

According to Andari et al. (in press), autistics "cannot understand or engage in social situations," as evidenced by autistics' outstandingly altruistic performance in this game. It is this profound social deficit, this altruistic autistic behaviour, that was targeted for treatment.

And indeed, the treatment was successful. Autistics randomly administered a nasal mist containing oxytocin, rather than a saline placebo, significantly improved. They became willing to work with one of the players in an effort to shun and discriminate against the other two, and thereby get more than their fair share of money and attention. They became willing to see the player who shared with them as good and trustworthy, and the player who shared with someone else as bad and untrustworthy. They learned and displayed selfishness and hypocrisy and us-vs-them thinking. Their objectivity, fairness, and altruism were--temporarily--cured.

Then this finding was replicated in a second small group of autistic adults who performed the same task but without monetary rewards.

Success! Cue the avalanche of blogging and media stories. Uta Frith says, "This could be revolutionary."

There is more to Andari et al. (in press), which also reports on two tasks involving face images, about which a few quick notes:

1. There is little ecological evidence that autistics avoid face images or do not make eye contact with face images.

2. Numerous other studies (a few examples here, here, here, here) which feature stronger designs (e.g., use of fixation crosses) have found typical duration and distribution of visual fixations to human face images, and/or typical attention to the eye area, in autistics.

3. For the nonautistic participants, the reported total visual fixation time to the face images--the crucial measure--well exceeds the total exposure time (both tasks), which has me, for one, scratching my head.

4. As yet there is no evidence that the reported oxytocin-related measured changes in visual fixation times to face images would overall be more beneficial than harmful to autistics.

5. In other studies (examples here and here) faster saccades and shorter visual fixation times, presumed by Andari et al. (in press) to be a very bad thing, have been associated with enhanced performance in autistics.

All this too is telling in its way, but it cannot equal the reported spectacular findings with respect to autism and altruism. In this respect Andari et al. (in press), even with its obvious limitations in design, is an enormously valuable paper. It has much to reveal about how autistics are regarded, and about the nature and consequences of the fight against autism.

For more about us-vs-them thinking in autistics and nonautistics, I recommend Tyler Cowen's prescient book, Create Your Own Economy, as well as this related video.

Interpretations of Andari et al. (in press) which in no way resemble the above can be found here, here, and here.

Reference:

Andari, E., Duhamel, J., Zalla, T., Herbrecht, E., Leboyer, M., & Sirigu, A. (2010). Promoting social behavior with oxytocin in high-functioning autism spectrum disorders Proceedings of the National Academy of Sciences DOI: 10.1073/pnas.0910249107

Postscript: This post has been included in the 22nd edition of Scientia Pro Publica.

What is severe autism?

2010-02-12T17:36:00.006-05:00

We have to wait, patiently, for the DSM-V people to cough up their system for ranking and classifying all autistics according autism "severity." In the meantime, some recently reported data are worth mulling over.

First, here is the most recent unofficial DSM-V autism "severity" ranking-system proposal, and here is my response, including information about instruments commonly claimed to measure autism "severity." The current official DSM-V void in this area can be located here.

An increasingly prominent measure of autism "severity" is the Social Responsiveness Scale. Developed by John Constantino, it now exists in different age-range versions. Its purpose encompasses quantifying what are presumed to be autistic traits, from none on up, across the full range of humanity.

The SRS is a 65-item questionaire most often filled out by parents or teachers, whose ratings classify children according to "severity of autistic symptomology." Higher scores, above an established threshold, indicate greater autism "severity," and are therefore considered worse.

In a recently epublished high-profile paper (Roberts et al., in press), SRS scores were reported for 25 autistic children who were recruited then divided into two groups according to performance on a popular test of language abilities.

The children were about 10 years old. Sixteen autistic children classified as non-language-impaired achieved an average language ability score of ~100, right at the mean for the administered test. In contrast, nine autistic children classified as language-impaired scored ~65, more than two standard deviations lower.

I'm going to ignore the main purpose of this interesting study, which used magnetoencephalography to compare auditory evoked responses in autistics and nonautistics. Instead I'll concentrate on how this divided sample of autistic children was characterized.

Apart from language scores, the authors reported what could be considered verbal and performance intelligence, as per indexes from the latest child version of the Wechsler scales. Here the non-language-impaired autistic children scored significantly higher, with ~20-point and ~16-point advantages, respectively, over the language-impaired autistic group.

As I wrote above, Roberts et al. (in press) also reported SRS scores, described here as "dimensional symptom severity ratings."

SRS raw scores are commonly used in research, but the SRS has also been standardized, providing T-scores which account for variables such as gender and differences between raters (e.g. parents vs teachers). T-scores are standard scores with a mean of 50 and a standard deviation of 10.

While the SRS is not yet considered a diagnostic instrument, a T-score of 60, one SD above the mean, is currently the SRS-based cut-off for an autistic spectrum diagnosis. Standard scores from 60 to 75 currently indicate SRS-based "mild to moderate" autism; 76 or higher is the SRS-based "severe" autism range.

As might be predicted, the two autistic groups in Roberts et al. (in press) differed significantly on SRS T-scores; that is, they differed on autism "severity." One group scored on average 70.89, falling into the "mild to moderate" range. The other scored 81.44, a full standard deviation higher, and crossed the threshold into "severe" autism.

As wouldn't be predicted at all, the non-language-impaired autistics, who had advantages not only in language but on measures of intelligence, were the "severe" autistics, while the language-impaired children were the "mild to moderate" ones.

My wild guess is that if an autism intervention was shown in fair tests to consistently produce a reduction in SRS scores of a full standard deviation, and what's more, transported groups--however small--of autistic children from the "severe" to the "mild to moderate" SRS range, this would be considered tremendous progress.

The sample of autistic children in Roberts et al. (in press) is of course very small, as is charateristic of the bulk of the autism literature, and much can happen within such small sample. But these data aren't inconsistent with numerous other existing reports, and deserve at least a look while we wait, patiently, for the DSM-V people to proclaim on autism "severity."

You can find an uncritical short blurb about the SRS, which used to be called the "Social Reciprocity Scale," here, and a more extensive, critical description here.

Many thanks to Jennifer Stevenson for (patiently) answering my questions about the SRS. Any factual errors are entirely mine and should you find any, you should alert me immediately.

Reference:

Roberts TP, Khan SY, Rey M, Monroe JF, Cannon K, Blaskey L, Woldoff S, Qasmieh S, Gandal M, Schmidt GL, Zarnow DM, Levy SE, & Edgar JC (2010). MEG detection of delayed auditory evoked responses in autism spectrum disorders: towards an imaging biomarker for autism. Autism research : official journal of the International Society for Autism Research PMID: 20063319

Postscript: This post has been included in the 21st edition of Scientia Pro Publica.

Proposed new autism criteria: the DSM-V

2010-02-10T17:03:00.013-05:00

Here they are and here are ten off-the-cuff thoughts:

1. The most sit-up-and-take-notice change is the total removal of Rett syndrome from the DSM. It is gone. The DSM-V people are saying, "genetic syndromes don't belong in our book," or words to that effect, and I agree.

2. Indeed the vast majority of named neurodevelopmental disabilities do not appear in the DSM, past, present, or future. This raises the question of why autism is there. Rett's being excluded is not going to immediately result in Rett's individuals being catastrophically deprived of recognition or assistance. Instead it may result in these individuals being regarded more accurately, to their great benefit. Removing autism from the DSM would have the same beneficial effect.

3. Another change to grapple with: CDD (Childhood Disintegrative Disorder) is now lumped in with autism, which in turn has a single vaguely phrased onset criterion. To cover CDD (Volkmar et al., 2005), that criterion will have to cover onset at age 5 (fairly common in CDD) and up to age nine (rare, but happens).

4. In addition, autism and CDD have very different cognitive profiles. This is one of many ways in which the DSM-V, even more than its predecessor, is running away from the productive and beneficial--to autistics--notion of autism as a cognitive phenotype.

5. The headline-making but most predictable--and most predictably responded to--change is the loss of Asperger's and PDD-NOS, which have both always been considered part of the autistic spectrum, as distinct-from-autism diagnoses. Whatever their shortcomings, the loss of these diagnoses is another signal that autism is, officially and more so than ever, merely a series of deficits in overt typical behaviour.

6. At the very least, the DSM-V strongly discourages any view of autism as an atypical cognitive phenotype involving relative (to nonautistics) cognitive strengths and weaknesses.

7. The changed criteria, which collapse the DSM-IV social and communication domains, overlook any role for manual and oral motor abilities in these two areas. And whose definition of the now-mandatory social reciprocity criterion will prevail? Here is John Constantino's one-way-street definition:

Reciprocal social behavior refers to the extent to which a child engages in emotionally appropriate turn-taking social interaction with others.

The closer-to-equal time, so to speak, now granted the previously-relegated RIRB (restricted interests and repetitive behaviours) domain could be seen as progress, ditto the disappearance of the "nonfunctional" assumption. But autistics will no longer have DSM-IV unusually focused and intense interests (a strength), we will instead be pathologically fixated.

8. The vagueness and subjectivity of the criteria should later be elaborated on with explanatory text which may add or subtract clarity. And the highly-publicized DSM-V effort to rank and classify all autistics according to a rigid hierarchy of "severity" is as yet missing. How the DSM-V will handle aspects of the by-far most important distinction within the autistic spectrum--the idiopathic vs etiological autism distinction (and see genetic syndromes, above)--remains to be seen.

9. While the DSM-V has enormous political clout, what might change in actual diagnostic practices is unclear. Clinicians and entities currently employing anything-goes or free-for-all and/or expedient-type standards are unlikely to change in this respect. And in many ways DSM-V autism is autism altered to conform to the current "gold-standard" autism diagnostic instruments (see the role of Catherine Lord in both), whose predominance, weaknesses and limitations have come to determine what autism is and isn't.

10. Organizations which (a) have little use for basic autism research (the kind I'm involved in) or actually oppose it; and (b) promote political views of autism, including that more services are always better--will likely be happy with the DSM-V changes. You can see ASAN fulfill this prediction here.

Reference:

Volkmar, F.R, Koenig, K., & State, M. (2005). Childhood Disintegrative Disorder. In: Volkmar, F.R., Paul, R., Klin, A.,Cohen, D. (Eds.), Handbook of Autism and Pervasive Developmental Disorders . Hoboken, NJ: Wiley.

Postscript: Another view of the new autism criteria is here. An overview of the proposed DSM-V in many areas is here.

Very early autism intervention: the Early Start Denver Model

2010-02-07T09:36:00.006-05:00

Early autism intervention research carries consequences for all autistics, and for a lot of nonautistics as well. DawsonG et al. (2010) is a newly-published randomized controlled trial of a newly-developed manualized very early autism intervention and as such deserves a close look.

Developed by Sally Rogers and Geraldine Dawson, the Early Start Denver Model has been the subject of a handful of previous papers, none involving anything approaching a major trial. ESDM is reported to combine the Denver Model with Pivotal Response Training, two interventions developed in the 1980s which individually lack good quality evidence for their benefits or harms. If you are interested in ESDM and its possible fall-out, I suggest reading the existing DM, PRT, and ESDM literatures.

A book chapter, possibly written circa 2006, describes the ESDM RCT, apparently before all the results were in (SmithM et al., 2008), and is essential reading, as is the riveting recently-published ESDM manual (Rogers & DawsonG, 2010).

My first exposure to the foundations of ESDM was a 2003 presentation by Sally Rogers. She showed a video of an adult picking up two blocks and banging them together and putting them down. In response a very young nonautistic child automatically picked up the blocks, banged them together, and put them down. A very young autistic child immediately noticed that the blocks were very interesting-shaped (and really they were--these were incredibly interesting blocks), picked them up, and inspected them closely seeing as they were so darn interesting.

You can guess which child's response was deemed wonderful and praiseworthy and "right," and which child's response was deemed defective and unfortunate and totally wrong. With this in mind, here are some comments:

About the ESDM

1. According to current definitions, ESDM is an "eclectic" autism intervention, combining ABA-based with non-ABA-based approaches. The manual specifies that ESDM "most closely resembles" RDI, DIR/Floortime, Hanen, responsiveness training, and SCERTS. ESDM also "has clear ties to" PRT, incidental teaching, and milieu teaching. And ESDM "has in common" some elements of ABA-based interventions as per Lovaas. Speech and occupational therapy are also thrown in. PROMPT too. The wide range of intervention approaches constantly available to children receiving ESDM is emphasized in all its available descriptions.

2. On principle and on the basis of small poor-quality trials, major behaviour analysts have claimed that "eclectic" autism interventions are ineffective; two recent examples here and here. The Association of Professional Behavior Analysts has thoroughly condemned "eclectic" approaches to autism, to uncritical applause by the Association for Behavior Analysis International's autism special interest group.

3. The reported overarching theoretical basis for ESDM is a 1985 book by the well-known psychoanalyst, Daniel Stern. Other psychoanalytic influences have been reported for the DM component of ESDM.

4. ESDM is further premised on autism being (from the manual) "at its heart a social disorder." Autistics' profound (entirely one-sided) failures in displaying proper interpersonal relationships and proper social motivation produce a cascade of purely negative effects disrupting all areas of proper development and learning.

5. The ESDM goal: autistics must become as "normal" (from the manual) as possible. Every waking hour, autistics must work towards the one ESDM-recognized proper way to relate, learn, play, develop, etc.

6. Autistics' tendency to learn in atypical ways is treated as though disordered and harmful--as evidence for our primary social deficits, which in turn deny us all the proper, typical "crucial learning experiences" (e.g., "birthday party games!"--from the ESDM manual).

7. The only proper ESDM way to learn is through typical interpersonal interaction involving proper, typical use of developmentally-proper highly-rationed highly-controlled materials which must only be regarded and manipulated by the child in the one proper socially-related ESDM manner.

8. Keeping information away from autistic children who are persistently at risk of learning from it in non-ESDM-approved ways is a theme throughout the ESDM manual. While it is claimed that ESDM does not require a therapy room, in fact there are many instructions as to how such a room should be set up. This is representative: "Ideally the room should be able to be arranged with nothing in it except a table and chairs and a closed or covered cabinet or shelves." This is called "the natural environment."

9. While a great advantage of ESDM is reported to be that it is "fun to do!" in fact the manual sternly declares, when contemplating autistics who may enjoy learning in the wrong non-ESDM way: "Our job is not to keep children happy; it is to teach them their objectives." And that very limited hierarchical range of objectives must be rigidly achieved in the one rigid proper manner and the one rigid proper order.

About the design of the ESDM RCT (DawsonG et al., 2010)

1. The trial spanned 2003-2008 and was registered more than a year after it started. Many of the reported planned measures (see SmithM et al., 2008), particularly those related to brain activity, go unmentioned in DawsonG et al. (2010).

2. Basic description: 48 autistic children within the age range of 18 to 30 months (actual range is not reported) were randomized to two groups, to recieve either a minimum of 2yrs of ESDM or of services available in the community. Children were evaluated with four main measures (Mullen, Vineland, ADOS, a scale of repetitive behaviours) and according to their diagnostic status, after about one then two years. At the two-year evaluation, children had received an average of 29 months of intervention. Children had to be at least 48 months at the 2-year evaluation; therefore children younger at intake received more intervention than children older at intake.

3. Numerous and strict, but not atypical, exclusion criteria were applied. For example, children considered to fall into the "severe" and "profound" ranges of intellectual disability were excluded, as has been done in many popularly-cited ABA controlled trials.

4. In this trial at least, the ESDM is not an intensive intervention. The authors aimed for 20hrs/wk, but achieved only 15.2 (standard deviation 1.4), which falls into the range of low intensity as currently defined.

5. Parents were expected to apply ESDM principles for an additional 5hrs/wk, but in fact reported (how accurately is unclear) more than triple this amount, indicating great enthusiasm and high expectations. ESDM parents also reported using non-ESDM services for about 5hrs/wk.

6. By the rock-bottom standards of the ambient autism literature, the ESDM trial design has many notable strengths. The intervention is manualized and attempts were made to establish treatment fidelity for the ESDM group. Currently-recognized gold-standard diagnostic instruments were used. By non-autism non-ABA standards, this is a very small trial, but it improves on an abysmal literature rife with even tinier trials. Most important, against the strong trend denying autistics even the possibility of good experimental design, this is an inexcusably rare RCT.

7. However, by very well-established standards in non-autism non-ABA areas, the ESDM RCT is in many respects poorly reported, which makes it difficult to properly asssess its design.

8. The control condition lacks virtually any useful description much less a rationale. Unspecified individuals provided the control group parents with unspecified information (what "resource manuals"? what "reading materials"?) including about unspecified services. The authors briefly trot out a few generic types of available services without indicating whether they were recommended or chosen. Children in this group received on average ~9hrs/wk of unspecified individual therapy plus the same of unspecified group-level therapy. Only mean intensities are reported--no SDs much less ranges. We don't know whether some children received huge amounts of intervention while others received none.

9. In my view, the authors' documented astonishing lack of interest in their own control group speaks to the very human expectations and biases applied to this group, which would be unlikely not to affect their outcomes.

10. Crucial information about who or what generated the randomization sequence, and whether or how allocation was concealed, is missing.

11. Remarkably, 51 autistic children were originally randomized to the two groups. Three disappear off to the side somehow, no explanation given, after random assigment to groups but without showing up in either group. Two assigned to the ESDM group rejected this intervention due to its requirements. The third, of unreported group assignment, was found to be not autistic, but Rett's. But none of these randomly allocated children shows up in their assigned group.

12. Even with the 48 children deemed to be assigned to a group, there is no intention to treat analysis. Data were ultimately lost from 3 children in the control group, no reason given.

13. The pre-post use of the ADOS as a scale of "severity" raises numerous questions. The first preliminary attempt at creating such a scale was not accepted for publication until the end of 2008 (and not epublished until 2009). This scale is further based on the revised ADOS algorithm, which is not cited by DawsonG et al. (2010) and was not accepted for publication until mid-2006.

14. Blinding is notoriously difficult in these kinds of trials. Parents cannot be blinded to intervention group, but some measures rely on parent report. While evaluators are described as "naive to invervention status," they are not described as blind to the nature and purpose of the study or of ESDM. Those involved in providing ESDM would in addition be aware of the study's purpose, importance, and outcome measures.

About the reported results of the ESDM RCT (DawsonG et al., 2010)

1. The ESDM manual provides results claimed to be from DawsonG et al. (2010), which is referred to both as "in press" and as a published 2010 Pediatrics paper. Inexplicably, information and data in the manual reported as being from DawsonG et al. (2010) differs somewhat from what is reported in the paper. There are also contradictions about the RCT within the ESDM manual regarding, for example, number of children in the ESDM group and intensity of the intervention they received.

2. There is an obvious error in the data in DawsonG et al. (2010). I spotted it immediately on first reading, as should anyone--you don't need to be able to do math in your head--who actually looks at the data. For two of the Vineland subscales (daily living and motor skills), some data are apparently reversed from Table 1 to Table 2, such that data in one table does not correspond to data in the other. The persistence of such an obvious error through copy-editing and so on raises questions about whether there are less obvious errors.

3. The main result is in the Mullen composite. On this score, the ESDM group finished at ~79, representing an ~18 point change from baseline but almost no change from the first year score of ~76. There is a just-significant 11-point change score advantage for the ESDM group over their controls at the two-year evaluation, an advantage which diminished from first to second year evaluations. The Mullen ESDM advantage is concentrated in the expressive and receptive language subscales.

4. Most striking re the Mullen composite is the huge increase in the scatter of ESDM scores. First and second year SDs are ~23 and ~24, much higher than baseline (SD ~9) and much higher than in the control group. Regardless, ranges of scores are not provided. But clearly one effect of ESDM is to dramatically increase variability of outcomes at a very young age. The ~11-point year two ESDM group advantage is drowned in their ~24-point SD.

5. While the ESDM group outperformed their controls on the Vineland composite, this results from the control condition reducing Vineland scores. These scores depend on unblinded parent report, which would plausibly reflect the disinterest and low expectations, obvious in how this study is reported, conveyed and applied to the control group. The ESDM group, regardless of their important advantages in this respect, did not experience any improvement in their Vineland scores over two years.

6. In addition, the ESDM group's Vineland scores show a huge increase in scatter, not found in the controls, by year two. The SD balloons from ~6 to ~16 (and from ~8 to ~22 in the communication sub-scale). Again, the ESDM's effect is to greatly increase variability in outcomes.

7. The authors dedicate a lot of space to claims of group differences in subjectively-determined diagnostic status. Those changes were limited to moves between autism and PDD-NOS--none of the children were judged nonautistic. However, on the ADOS, the only reported quantitative measure which offers the possibility of differentiating PDD-NOS from autism, the groups did not differ in outcome. Also, diagnosis was remarkably stable in this study, compared to previous findings regarding children in the 30-month-or-younger age range.

8. Apart from not differing on ultimate ADOS "severity" scores, the groups did not differ on a repetitive behaviours scale. The ESDM did not make autistic children measurably "less severely autistic" by the usual standards.

9. The premise of ESDM is that only through displaying proper typical social interaction and behaviour can autistics begin to learn anything worth learning. In the two reported measures of social abilities (ADOS, Vineland socialization), the ESDM children did not do any better than their controls at either evaluation. They did not improve (by the usual standards) pre-post, with losses in Vineland socialization.

10. The ubiquitous claim that "earlier is better" accompanying the publicity for this study is unjustified. The authors made no attempt to correlate outcomes with their 12-month possible age-range at intake. To the contrary, the authors enacted the view that younger children at intake must receive more intervention in order to be judged alongside children who were older at intake--the contrary position to "earlier is better."

11. The ESDM can only be used up to 60 months, with objectives targeted at children up to 48 months. At the end of this RCT, the ESDM children had a possible age range (actual range not reported) from 48 to 54 months. All were still autistic or PDD-NOS. Given the enormous increase in scatter of Mullen and Vineland scores, some had done extremely poorly by the usual standards. Against the unfounded claims of "earlier is better," questions arise as to how being so judged at such a young age within a highly publicized intervention will affect these children.

12. In reporting the ESDM RCT, the ESDM manual states that "ESDM needs to be independently replicated before it can be considered an empirically supported treatment." But a recent paper whose senior author is Sally Rogers claims that ESDM is "evidence-based" and that its components are "empirically supported."

A few last comments

Eric Fombonne has published a Pediatrics eLetter about the ESDM RCT. He concurs with some points I make, not with others, and he failed to spot the error in the data.

If you rummage around in the ClinicalTrials.gov site you will find an in-progress multi-site RCT of the ESDM where intake age range has been dropped to 12 to 24 months. You will also find a multi-site RCT, targeting 5-12 month old children considered "at risk" for autism, which will likely use ESDM-type intervention in an effort to prevent autism.

As a large body of work, the ESDM manual, RCT, and other related materials, including the formal and informal work of Geraldine Dawson and Sally Rogers, read like a total condemnation of what I've done in the above. I'm not supposed to notice details and errors, contradictions and anomalies--or if I inappropriately do, I should forget about them and concentrate on emitting socially-appropriate responses (pick up the blocks, bang them together, put them down--don't look at them). I'm not supposed to notice other discrepancies, for instance between recognized scientific and ethical standards and those imposed on autistics. I'm supposed to direct all my effort towards the developmentally-appropriate equivalent of "birthday party games!"

The above should be verifiable, through reading the supplied sources. As usual, if I've made any factual errors, always a possibility, please let me know.

References:

Dawson, G., Rogers, S., Munson, J., Smith, M., Winter, J., Greenson, J., Donaldson, A., & Varley, J. (2009). Randomized, Controlled Trial of an Intervention for Toddlers With Autism: The Early Start Denver Model PEDIATRICS, 125 (1) DOI: 10.1542/peds.2009-0958

Rogers, S.J., & Dawson, G. (2010). Early Start Denver Model for Young Children with Autism. New York, NY: Guilford Press.

Smith, M., Rogers, S., & Dawson, G. (2008). The Early Start Denver Model: a comprehensive early intervention approach for toddlers with autism. In: Handleman J.S., Harris S.L., eds., Preschool Education Programs for Children With Autism, 3rd ed. Austin, TX: Pro-Ed, pp. 65–101.

1 in 86: the prevalence of autism among adults

2009-12-31T11:43:00.011-05:00

"Autism rate in children has doubled, say doctors" ... "Autism 'more common than thought'" ... "Autism in children '10 times higher' than first thought" ... "Autism at a record high" ... "autism is 25 times more common than what researchers thought"...

This mess of headlines and claims was generated in response to one autism prevalence study, Baird et al. (2006), published in the Lancet.

All 56,946 individuals comprising the targeted population cohort in this study are, as of today, the last day in the decade, 18 years of age or older. They were born between July 1, 1990 and Dec 31, 1991 and they are now all adults.

Within this cohort, Baird et al. (2006) reported an autistic spectrum prevalence of ~116/10,000. That's 1 in 86, and all these autistics, originally assessed as such when 9 to 14yrs old, are now adults.

For those to whom this is a matter of pressing importance, Asperger's contributed exactly nothing to that prevalence figure. So none of those 1 in 86 assessed-as-autistic now-adults are, at least according to Baird et al. (2006), Asperger's.

I've previously rattled on about Baird et al. (2006), one of the most important autism epidemiological studies to be published to date, and one of the most misrepresented. The authors found that small differences in case definition produced prevalence figures ranging from ~25/10,000 (1 in 400) to ~116/10,000 (1 in 86), a 4.6-fold discrepancy--within the same cohort at the same time, using the same diagnostic criteria, diagnostic team, and "gold standard" diagnostic instruments.

In the context of an earlier closely related prevalence study (Baird et al., 2000), the authors additionally found that a change in case ascertainment method doubled autistic spectrum prevalence within very nearly the same cohort, even when diagnostic standards were equivalent.

But such provocative and crucial findings, and others similar, were lost in the predictably incoherent uproar (see representative headlines and quotes, above) over that one figure--the 1 in 86 who as of today are all adults. I suggest that if Baird et al. (2006) had been conducted in exactly the same manner with a cohort born five years earlier, the findings would not be much different. Or ten years earlier, or more, were that possible. Of course that's a wild guess, but not an entirely unfounded one.

Earlier this year, a small innovative UK study reported a prevalence of about 1 in 100 for autistics aged 16 and up--for autistic adults right up to and over age 75. There are only bad reasons for why this small study of autistic adults is unique and unprecedented.

The world would look very different now, for both autistics and nonautistics, if over the past decade or more there had been a rational discourse about autism prevalence in which the existence of older autistics was not automatically denied.

References:

Baird, G., Charman, T., Baron-Cohen, S., Cox, A., Swettenham, J., Wheelwright, S., & Drew, A. (2000). A screening instrument for autism at 18 months of age: a 6-year follow-up study. Journal of the American Academy of Child and Adolescent Psychiatry, 39, 694-702.

BAIRD, G., SIMONOFF, E., PICKLES, A., CHANDLER, S., LOUCAS, T., MELDRUM, D., & CHARMAN, T. (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP) The Lancet, 368 (9531), 210-215 DOI: 10.1016/S0140-6736(06)69041-7

Autistic people are persons: An anniversary

2009-10-03T19:02:00.004-05:00

The statement that "autistic people are persons" is part of the 2008 decision by the Canadian Human Rights Tribunal in Dawson vs Canada Post Corporation. Today, this decision is one year old. Here is the relevant excerpt:

[133] This said, there is no doubt for the Tribunal that autistic people are persons, that unfortunately they are not well accepted in society, that they are looked at often times as special creatures who are not part of society as a whole and that society would be better off without them. The Tribunal is further of the view that autistic people need to be better respected and protected in society. They need above all to be better understood and accepted. [...]

[134] Hence, the Tribunal is of the view that the Canadian Human Rights Act provides to autistic people the same protection as to non autistic people and that both are equal before and under the law.

These statements are contrary to existing Canadian jurisprudence. In ABA-related litigation, autism advocates have used Canada's major human rights laws, including our highest law, the Charter of Rights and Freedoms, to deny the humanity, personhood, equality and human rights of most autistics in Canada.

This wholesale denial and dehumanization is exemplified in the Auton and Wynberg trial decisions. These two decisions have been universally revered and promoted by autism advocates, as representing what autistics deserve.

Autism advocates also universally opposed my intervention in Auton, which sought to inform the Supreme Court of Canada that, contrary to the positions of both sides, autistics are human beings with human rights, and this status should not be denied to most autistics in Canada.

By "most autistics," I mean those of us, the majority of autistics in Canada, who have not received unlimited ABA-based interventions starting early in life.

To my knowledge, the CHRT decision in my case is unprecedented in Canada, in recognizing the personhood, humanity, equality, and human rights of autistics--regardless of which interventions we have or have not received at any point in our lives. More about the CHRT decision, including its serious problems, can be found here, and some background is here.

The CHRT decision was not appealed by Canada Post. It has also been cited in another case, this time decided in Federal Court, involving an autistic and Canada Post. Here is an example of how my case was cited, from paragraph 79:

The Dawson case above, specifically is critical of rigid corporate rules that preclude true inclusiveness of those with disabilities such as the applicants.

The decision in my case was helpful in giving another autistic person the chance to pursue, if she wishes, a human rights case based on Canada Post's decision not to hire her. And the Federal Court decision in turn includes language which may further help other autistics seeking to be regarded and treated as human beings with human rights.

Autistic people are persons--happy anniversary.

An anomaly in autism intervention research

2009-07-23T15:04:00.007-05:00

Promotion first, science later, if ever. This pattern is near universal when it comes to autism interventions. In the absence of good quality research, autism interventions are loudly claimed to be effective.

For those promoting ABA-based autism interventions, claims of effectiveness unfounded in good quality research were only the first step. The real triumph has been widespread agreement that fair tests of ABA-based interventions are unethical and bad for autistics. As a result, any experimental design carrying the risk of being informative about the benefits and harms of ABA-based interventions has, for a long time now, been considered unethical.

The practice of claiming effectiveness for an autism intervention which has not been fairly tested, then using these claims of effectiveness to deem fair tests unethical, has clear benefits to service providers. And this practice has received wall-to-wall support from autism advocates, who have in turn imposed it on autistics through lobbying and litigation.

Meanwhile, this practice is not admired outside the realm of autism advocacy. Premature claims of effectiveness in themselves make fair tests of interventions more difficult--particularly, as is the case with many autism interventions, when blinding cannot be fully achieved. But those promoting ABA-based autism interventions go further and demand that autistics be entirely denied the benefit and protection of good experimental design.

In my view, this practice--its longstanding and widespread support by autism advocates, its more recent support by ASAN (example here), and its widespread imposition on autistics--continues to greatly harm autistics. Any group so denied such basic standards of science and ethics would be harmed.

Interestingly, not all autism researchers have stooped to prevailing autism advocacy standards.

Some years ago, a pilot RCT of an early autism intervention was published (Aldred et al., 2004). The intervention was manualized, of relatively low intensity, and targeted solely at the parents of preschool autistic children. Through a true experimental design, the intervention was found to have several significant positive effects, most markedly in increasing the expressive language of very young autistic children.

Successful RCTs of early autism interventions are virtually non-existent. But the researchers involved in Aldred et al. (2004) totally failed to go forth and proclaim the effectiveness of their manualized intervention. After all, they only had a small pilot RCT--the same size as the only published RCT, not a notably successful one (Smith et al., 2000, 2001), in the entire 48-year history of research into ABA-based autism interventions.

Instead of issuing premature claims of effectiveness, the authors of Aldred et al. (2004) and many other collaborating UK researchers went on to conduct a large multi-site RCT, the Preschool Autism Communication Trial. They received MRC funding for this 4-year project in 2005.

Some information about the PACT's design has been reported in a recent paper (Aldred & Green, 2009).

The trial began in early 2006 and will finish late this year. The researchers hoped to recruit 144 preschool autistic children across three sites, but exceeded their expectations and recruited 152. These children were randomized into two arms, one receiving the PACT intervention, while children in both arms continued to receive whatever other interventions their parents chose ("treatment as usual").

So far as I know, the PACT is larger than any existing published RCT in the history of autism research. The PACT's design means that it carries a good risk of being informative about the effectiveness of the studied intervention. There is no good reason for the PACT to be unprecedented, but it is.

In one of the PACT's recent newsletters, the PACT's Chief Investigator, Jonathan Green, notes that there has been a lot of interest in the PACT manual and in "training opportunities" with respect to this intervention. Dr Green responds:

Until we have the results of the trial we are not able to disseminate the intervention manual or to undertake any training; but be assured that after the results are in (and depending of course on the outcome in terms of effectiveness!) we do have potential plans in place for such dissemination.

In other words, and keeping in mind there is a successful published pilot RCT, there are no plans to disseminate information about the intervention--not until there is good quality evidence as to its effectiveness. This is the recognized scientific standard in non-autism areas.

Aldred et al. (2004) and the PACT shouldn't in any way be above scrutiny or criticism. For example, I can see problems in how Aldred et al. (2004) was designed (I mention one of them here), which may or may not be carried over to the PACT. But the pilot RCT and the resulting PACT generally demonstrate the only science- and ethics-based sequence when it comes to interventions and treatments: good quality research first, then think about spreading the word.

References:

Aldred, C.R., & Green, J. (2009). Early social communication
interventions for autism British Journal of Hospital Medicine, 70 (3), 143-145

Aldred, C., Green, J., & Adams, C. (2004). A new social communication intervention for children with autism: pilot randomised controlled treatment study suggesting effectiveness Journal of Child Psychology and Psychiatry, 45 (8), 1420-1430 DOI: 10.1111/j.1469-7610.2004.00338.x

Smith, T., Groen, A.D., and Wynn, J.W. (2000, 2001). Randomized trial of intensive early intervention for children with pervasive developmental disorder. American Journal on Mental Retardation, 105, 269-85. Erratum in American Journal on Mental Retardation, 105, 508. Erratum in American Journal on Mental Retardation, 106, 208.

Addendum: This post is included in the 116th Meeting of the Skeptics' Circle hosted by Beyond the Short Coat.

Alan Turing's brilliant essay

2009-07-15T10:50:00.002-05:00

In 1950, Alan Turing wrote "Computing Machinery and Intelligence." This one short paper, exploring what came to be called the Turing test, continues to influence research and thinking across multiple fields.

Tyler Cowen and I have co-authored a new paper asking two questions. What does the Turing test really mean? And how many human beings (including Turing) could pass? Our premise is that some aspects of Turing's paper have not received sufficient attention:

Turing’s paper is rich and multi-faceted and we are not seeking to overturn all of the extant interpretations. We do wish to suggest that a potent and indeed subversive perspective in the paper has been underemphasized. Some of the message of Turing’s paper is encouraging us to take a broader perspective on intelligence and some of his points are ethical in nature. Turing’s paper is about the possibility of unusual forms of intelligence, our inability to recognize those intelligences, and the limitations of indistinguishability as a standard for defining intelligence. “Inability to imitate does not rule out intelligence” is an alternative way of reading many parts of his argument. Turing was issuing the warning that we should not dismiss or persecute entities which we cannot easily categorize or understand.

The facts of Turing's life enter into our argument, as does autism in many respects. Here is what we conclude:

It is possible that Turing conceived of his imitation test precisely because he had so much difficulty “passing” and communicating himself. In social settings these facts were seen as disabilities but in the longer term they helped Turing produce this brilliant essay.

Tyler Cowen is a professor of economics at George Mason University. His page is here. He blogs at Marginal Revolution; his post about our paper is here.

Definitely not autism advocacy: Accomplishments, capabilities, and rights

2009-07-13T15:32:00.001-05:00

As an advocate for the rights of physically and mentally disabled people, I am acutely aware of how many people in our society consider the disabled to be childlike, helpless, hopeless, nonfunctioning and noncontributing members of society.

This opens a NYT opinion piece written by Evan Kemp. While Mr Kemp raises concerns about a specific fundraising event, his statements have much broader relevance.

For instance, Mr Kemp writes of the great harm that ensues when disabled children are denied the possibility of learning from successful disabled adults. The autism advocacy signature argument that disabled adults with achievements cannot really be disabled is not directly mentioned. But this is just another way to deny that successful disabled adults exist and it carries the same consequences.

Mr Kemp also notes how portraying disability as "overwhelmingly destructive" results in fear of disabled people and our consequent segregation from society. Then there is the issue of research priorities, some of which have the effect of supporting:

the damaging and common prejudice that handicapped people are "sick." As sick people, it follows that we should allow others to take care of all our needs until a cure is found.

Throughout his piece, Mr Kemp emphasizes that regarding disabled people as frightening and pathetic infantilizes us and leads us towards segregation, hopelessness, and dependence, to the great detriment of ourselves and others. Mr Kemp concludes with many recommendations, including:

Problems of economic waste, demoralization and segregation can be solved only when disabled people are depicted in the light of our very real accomplishments, capabilities and rights.

Mr Kemp's opinion piece was published almost three decades ago, in 1981. You can find it here. Autism advocacy continues to run in the opposite direction, rejecting and rolling back what we have learned about disability and human rights, going backwards in time to before Mr Kemp ever said a word.

Evan J. Kemp Jr. died in 1997. You can read his obituary here.

The highest autism prevalence ever?

2009-07-06T05:43:00.007-05:00

Baron-Cohen et al. (2009) propose a world where there are 157/10,000 autistics. The authors used what they call a "novel approach" to autism epidemiology and this is worth a closer look.

The study is based on questions sent to schools about the UK SEN (Special Education Needs) register, and a survey, including a screening questionaire, sent to parents of students aged 5 to 9 years. Many schools, 66 out of 162, refused to participate. Of schools that agreed, 79 of 96, representing 8824 out of 11,635 children, provided SEN register information. Of the surveys sent to parents, 29%, representing 3373 out of 11,700 children, were responded to.

Participating schools located 83 children identified as autistic spectrum according to the SEN register. Of these, 10 children were assigned the specific diagnosis of autism (I'll call them "specific-autism"), while the rest were assigned other autistic spectrum diagnoses ("other-spectrum"). None of these diagnoses was verified by Baron-Cohen et al. (2009) in any way. These 83 SEN children constitute 94/10,000 of the proposed 157/10,000.

In the survey, parents were asked whether their child had an existing autistic spectrum diagnosis. The authors "confirmed," to their standards, through information from parents only, diagnoses for 19 children. Four others attended special schools and were assumed to be "confirmed" as autistic without any verification, for a total of 23. No information about how many of these children are specific-autism or other-spectrum is given. The 23 children were expanded into a prevalence of 99/10,000--impressively close to the SEN register figure.

The screening questionaire sent to parents was the recently re-named CAST (Childhood Autism Spectrum Test). All children reported by parents as scoring above one CAST threshold, and a minority of children scoring above a lower CAST threshold, and who were not already reported by the parent survey to be autistic, were invited for assessment. Eventually 77 children underwent assessment by ADOS, ADI-R, and clinical judgment. Eleven children were given autistic spectrum diagnoses--four specific-autism, seven other-spectrum.

So there are three sets of autistic children here: 83 SEN children, 23 diagnosis survey children, and 11 CAST children. The CAST children are considered to represent "unknown" or "undetected" autistics in schools, while the other two sets of children (SEN and diagnosis) represent equivalent samples of "known" autistics who have been located in two different ways from very nearly the same cohort.

Working from the diagnosis and CAST samples, Baron-Cohen et al. (2009) come up with a ratio of total number of cases (known plus unknown) to known cases, which yields a multiplier of 1.67. This in turn is applied to the SEN-based prevalence of 94/10,000, resulting in that grand total of 157/10,000.

And this all looks quite reasonable. Even the Neuroskeptic thinks so. But here are a few things I noticed.

The authors report no means of verifying whether the SEN and diagnosis samples are equivalent, an assumption on which the study depends. There is a dearth of demographic information, including the absence of any reported demographic measure common to both the SEN and diagnosis samples.

And for neither "known" sample (SEN and diagnosis) were any of the diagnoses verified either through direct assessment or direct access to records. Other recently reported UK epidemiology has not arrived at such a tidy agreement between prevalence of existing autism diagnoses and prevalence of autistics on the SEN register, nor at such a high prevalence using information from one or both sources.

Before they started sending out surveys, Baird et al. (2006) found that about 15% of 255 autistics with a "known" autism diagnosis (according to various health and clinical records) were not on the SEN register--under any diagnosis at all. This percentage would likely be higher if SEN autistic spectrum diagnoses only were considered.

Whether the 255 "known," pre-survey diagnoses from Baird et al. (2006) would be considered "confirmed" according to the standards of Baron-Cohen et al. (2009) is unclear to me, but in Baird et al. (2006), they add up to a prevalence of ~45/10,000. This is less than half the prevalence of what should be the comparable "known" diagnosis sample in Baron-Cohen et al. (2009).

Then there is Williams et al. (2008), where the authors had access to both medical and SEN records for an entire 14,062-child cohort. Using both kinds of records, they located a total of 86 "known" autistics for a prevalence of ~62/10,000. Of these, 36% were found in medical records only; 17% were found in SEN records only; and 47% were found in both.

Here again the "known" diagnosis total prevalence, derived from direct examination of complete records rather than selective responding to questions directed at schools or parents, is a much lower figure than found via both the SEN and diagnosis samples in Baron-Cohen et al. (2009). And Williams et al. (2008) show that diagnoses appearing in medical records, and diagnoses recorded via SEN, do not produce the same samples of autistic children--at least, not when there is direct access to these records for a complete cohort.

The original contribution of Baron-Cohen et al. (2009) is, according to the authors, the attempt to identify school-aged autistics who haven't been spotted as atypical. This is claimed to set their study apart from Baird et al. (2006). But 8 of the 77 children chosen for direct assessment through CAST screening in Baron-Cohen et al. (2009) were reported to be from "special schools" which, according to the authors, "require extensive assessment of individual special needs." Yet the authors suggest the CAST-screened sample was, in their words,

...quiet and cooperative at school and not difficult to manage and therefore teachers may not be aware that they have difficulties.

I don't know whether the CAST-screened special school children (who may or may not have been in the final 11) were on the SEN register, but doesn't this seem likely? Assuming for now (because you can only assume) that this was not under an autism diagnosis, in fact these were exactly the children screened for autism by Baird et al. (2006)--all children on the SEN register for any reason.

Further in this direction, Baron-Cohen et al. (2009) surprisingly report no way for the authors to verify whether the CAST-screened children were or were not on the SEN register, under any diagnosis--including autism. But the study hinges on the two samples, the SEN and CAST samples, being independent from each other.

One more thing to note is the actual composition of the 157/10,000. These numbers come from the reported data. Here goes:

11/10,000: "known" specific-autism children (SEN register)
23/10,000: "unknown" specific-autism children (CAST screening)
83/10,000: "known" other-spectrum children (SEN register)
40/10,000: "unknown" other-spectrum children (CAST screening)

If you add up the figures, you get the 157/10,000 total, of which 34/10,000--well within the range of previous findings--represents prevalence for the specific diagnosis of autism. The authors checked ratios of known to unknown autistic males vs females, and found no difference, showing that female autistics were not more likely than male autistics to be undetected. But the authors didn't check ratios of known to unknown autistics for specific-autism vs other-spectrum diagnoses.

If they did, they would find that for every known specific-autism child, there are about two unknown. The opposite is true for other-spectrum children, where about two are known for every unknown child. While only one-third of all specific-autism children are known, two thirds of other-spectrum children are known. Does this mean that children who meet criteria for the specific diagnosis of autism are much harder to spot, or are doing much better in school, than children who are popularly regarded as having "less severe" autistic spectrum diagnoses?

Or maybe the data are just very difficult to interpret. As usual, if I've made any factual errors, please let me know.

References:

Baird, G., Simonoff, E., Pickles, A., Chandler, S., Loucas, T., Meldrum, D., & Charman, T. (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Lancet, 368, 210-215.

Baron-Cohen, S., Scott, F., Allison, C., Williams, J., Bolton, P., Matthews, F., & Brayne, C. (2009). Prevalence of autism-spectrum conditions: UK school-based population study The British Journal of Psychiatry, 194 (6), 500-509 DOI: 10.1192/bjp.bp.108.059345

Williams, E., Thomas, K., Sidebotham, H., & Emond, A. (2008). Prevalence and characteristics of autistic spectrum disorders in the ALSPAC cohort Developmental Medicine & Child Neurology, 50 (9), 672-677 DOI: 10.1111/j.1469-8749.2008.03042.x

Notes on autism severity and the DSM-V

2009-06-15T11:56:00.004-05:00

I was asked briefly to comment on the notion of "severity" of autism as currently proposed for the DSM-V. Here are some far from complete notes (some from earlier writing or work of mine) I organized in response:

Currently, “severity” of autism most often refers to the attempt to quantify the obviousness of autistic traits and abilities. The more obvious these traits and abilities are judged to be, and therefore the more atypical a person is judged to be, the more “severe” autism is considered to be.

Being “more severe” (having more obvious autistic traits and abilities, or being more obviously atypical) is widely presumed to be worse than being “less severe” (having less obvious autistic traits and abilities or being less obviously atypical), while being not autistic at all (no obvious autistic traits and abilities) is considered an “optimal outcome.”

However, there is no current consensus on what neurocognitive differences underlie observable autistic atypicalities and therefore fundamentally define what makes a person autistic rather than nonautistic. At this fundamental level (what autism is), there is currently no consensual way to judge who is “more autistic” or “less autistic” (which would be construed as “more severely autistic” and “less severely autistic”) or whether this would be good, bad or irrelevant.

Currently there is/are no consensual instrument(s) agreed to measure autism “severity.” The major diagnostic instruments (ADOS, ADI-R) do not work like scales, though they have often and misleadingly been misapplied this way. A recent preliminary attempt to transform the ADOS into a scale of “severity” has just been published (Gotham et al., 2009).

On popular measures of “severity” (the CARS, the ADI-R improperly used as a scale, the SRS), an autistic who has one or more very high apparent abilities (that is, has a highly uneven profile of apparent abilities) will score as more "severe" than an autistic whose apparent abilities are uniformly low.

The large proportion of autistics recently reported to have exceptional skills (Howlin et al., 2009) would be judged as less “severe” if they lost those skills. Exceptional skills are considered to increase “severity” (that is, atypicality) in autism, not decrease it. This would also likely be true of autistic cognitive strengths which have been revealed in the peer-reviewed literature in comparisons between the performance of autistics and nonautistics on a wide range of tasks (I have started compiling an inventory of these, which was the subject of an IMFAR 2009 poster). Indeed, at IMFAR 2009, the loss of exceptional autistic abilities (Eigsti et al., 2009; from Deborah Fein’s group) was reported as evidence for “optimal outcomes” in autism.

In the same direction, we have found that autistics who scored higher on pieces of the ADI-R (and would therefore commonly be assumed to be "more severe") had a wide range of better visual skills than autistics who scored lower on these measures (Caron et al., 2006).

Perhaps unsurprisingly then, autism “severity” (defined and measured in various ways) has been a poor predictor of outcomes in autism (Howlin, 2005). Here are two examples from papers reporting very good outcomes in autism:

It cannot be emphasized strongly enough that… it would have been impossible for anyone to predict this outcome. (Kanner et al., 1972)

… early history explained little of the variance in outcome. Indeed, the good and poor outcome groups differed little with respect to early impairments in social responsiveness, deviant language, and bizarre behaviors. (Szatmari et al.,1989)

Currently the best adult outcomes reported in the literature still belong to autistics who as children met the narrowest, strictest, and presumed-to-be most “severe” autism diagnostic criteria ever devised (Kanner et al., 1972; Szatmari et al., 1989; Farley et al., 2009). Asperger (1944/1991) described an individual whose outcome was outstanding (he was a successful academic) as “grossly autistic” with “impossible behavior,” etc.

Some of the most obvious (that is, most “severe”) and successful autistics have been and continue to be individuals regarded as autistic savants. Indeed, the “obviousness” of these individuals, the fact that their atypicalities are so obvious (which would be judged as so “severe”), has been successfully exploited in the autism literature as a means of investigating the fundamental atypicalities which make autistics autistic.

The assumption that having more obvious autistic traits and abilities is bad (“more severe”) has resulted in prejudicial judgments in the literature. An autistic boy (who has accomplished more as a child and young adult than most people, autistic or otherwise) with a full-scale IQ of more than 100 and a strong performance on numerous tests is judged to be “low-functioning,” because he is so obviously atypical. That is, he is judged to be very “severely” autistic (Bonneh et al., 2008; Belmonte et al., 2009), and this must solely be a very bad thing. In Aldred et al. (2004), preschool autistic children are falsely judged to be “low-functioning” or “high-functioning” solely on the basis of presumed autism “severity” falsely drawn from ADOS scores. It is being falsely and prejudicially assumed that an autistic whose traits and abilities are more obvious must function poorly.

The proposed DSM-V changes will enhance societal prejudices against autistic traits and abilities. These prejudices already serve to prevent autistics whose traits and abilities are more obvious from being considered able to learn, to communicate, to make decisions about our lives, to walk around freely, to be employed, etc. Under the proposed DSM-V changes, autistics who are highly and obviously atypical would be even more harshly judged, without there being anything approaching a sufficient empirical rationale for this. Autistics whose communication and social interaction is highly atypical, or who most strongly pursue their focused abilities and interests (something which has widely been acknowledged leads to good outcomes, but has largely not interested researchers; Howlin, 2005), will now be at risk of being regarded as “most severe.” This is at a time when the term “severe autism” is popularly equated with low expectations, hopelessness, dread and horror.

Also, in my experience, the term “severe autism” is commonly used as a justification for why autistic people not only can but must be treated in ways that would be instantly recognized as unacceptable in any other population. This includes lowering or discarding very basic standards of science and ethics, a pervasive practice now applied to the entire autistic population. I am referring to the basic standards of science and ethics that automatically protect and benefit nonautistics, and without which they could not proceed safely in society, much less have good outcomes.

The proposed DSM-V wording raises numerous specific concerns; I will mention two. One is that it enshrines the false and harmful assumption, an assumption showing a striking absence of reciprocity on the part of the DSM-V committee, that if autistics communicate or interact in atypical and possibly very adaptive ways, then this communication or interaction must be defective or wrong, or must not exist at all. Another concern is that by using words such as “rituals,” the DSM-V is perpetuating the misconstrual of autistics’ focused abilities and interests (and motor mannerisms). This misconstrual led to the demonstrably false and harmful assumption that autistics’ atypicalities in this area amount to “obsessions” and must be treatable in the same manner as OCD (see recent failed citalopram RCT, King et al., 2009; a failed fluoxetine RCT has been announced by Neuropharm and Autism Speaks, but not published yet).

In these and other ways the proposed DSM-V autism criteria define possibly very adaptive but atypical autistic traits and abilities as being more “severe” (worse or more defective) the more they are obvious. This leads to the assumption that such traits and abilities should ideally be suppressed and eliminated.

References:

Aldred, C., Green, J., & Adams, C. (2004). A new social communication intervention for children with autism: pilot randomised controlled treatment study suggesting effectiveness. Journal of Child Psychology and Psychiatry, 45, 1420-1430.

Asperger, H. (1944/1991). 'Autistic psychopathology' in childhood (Frith, U., Trans.). In: Frith, U. (Ed.), Autism and Asperger Syndrome. Cambridge University Press, Cambridge, UK, pp. 37-92.

Belmonte, M.K., Bonneh, Y.S., Adini, Y., Iversen. P.E., Akshoomoff, N.A., Kenet, T., Moore, C.I., Simon, H.J., Houde, J.F., & Merzenich, M.M. (2009). Autism overflows with syntheses. Neuropsychology Review, 19, 273-4.

Bonneh, Y.S., Belmonte, M.K., Pei, F., Iversen, P.E., Kenet, T., Akshoomoff, N., Adini, Y., Simon, H.J., Moore, C.I., Houde, J.F., & Merzenich, M.M. (2008). Cross-modal extinction in a boy with severely autistic behaviour and high verbal intelligence. Cognitive Neuropsychology, 25, 635-52.

Caron, M.-J., Mottron, L., Berthiaume, C., & Dawson, M. (2006). Cognitive mechanisms, specificity and neural underpinnings of visuo-spatial peaks in autism. Brain, 129, 1789-802.

Farley, M.A., McMahon, W.M., Fombonne, E., Jenson, W.R., Miller, J., Gardner, M., Block, H., Pingree, C.B., Ritvo, E.R., Ritvo, R.A., & Coon, H. (2009). Twenty-year outcome for individuals with autism and average or near-average cognitive abilities. Autism Research, 2, 109-118.

Gotham, K., Pickles, A., & Lord, C. (2009). Standardizing ADOS scores for a measure of severity in autism spectrum disorders. Journal of Autism and Developmental Disorders, 39, 693-705.

Howlin, P. (2005). Outcomes in autism spectrum disorders. In: Volkmar, F.R., Paul, R., Klin, A.,Cohen, D. (Eds.), Handbook of Autism and Pervasive Developmental Disorders (pp. 201-220). Hoboken, NJ: Wiley.

Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2009). Savant skills in autism: psychometric approaches and parental reports. Philosophical Transactions of the Royal Society B: Biological Sciences, 364, 1359-1367.

Kanner, L., Rodriguez, A., & Ashenden, B. (1972). How far can autistic children go in matters of social adaptation? Journal of Autism and Childhood Schizophrenia, 2, 9-33.

King, B.H., Hollander, E., Sikich, L., McCracken, J.T., Scahill, L., Bregman, J.D., Donnelly, C.L., Anagnostou, E., Dukes, K., Sullivan, L., Hirtz, D., Wagner, A., & Ritz, L. (2009). Lack of efficacy of citalopram in children with autism spectrum disorders and high levels of repetitive behavior: citalopram ineffective in children with autism. Archives of General Psychiatry, 66, 583-590.

Szatmari, P., Bartolucci, G., Bremner, R., Bond, S., & Rich, S. (1989). A follow-up of high-functioning autistic children. Journal of Autism and Developmental Disorders, 19, 213-225.

The autistic way of laughing

2009-05-27T14:40:00.009-05:00

There are real and fake smiles that can be distinguished visually, if you know how, and it turns out that there are real and fake laughs. William Hudenko, a clinician and researcher, patiently explained this to me at IMFAR 2009. Real laughs are "voiced" versus fake laughs that are "unvoiced" and these two kinds of laughs can be distinguished acoustically.

Hudenko et al. (in press) describe voiced laughs as having a "tonal, song-like quality" and as "strongly associated with positive affect," while unvoiced laughs are "largely atonal and noisier." Instead of reflecting a person's genuine emotions, unvoiced laughs are hypothesized to reflect various social signals.

When nonautistics laugh, about half the time their laughs are unvoiced. So how do autistics laugh?

Hudenko and his colleagues collected a lot of laughs from autistic children and two groups of nonautistic children (matched on chronological age, and matched according to vocabulary test age equivalents). Laughs were elicited in a 10-minute "laugh assessment sequence" in which "an examiner playfully interacted with each child."

The results? Autistics laughed just as much as nonautistics. The sole difference between autistic and nonautistic laughs was in proportion of voiced laughs. While on average, 97% of autistic children's "laugh episodes" were voiced, only 63% and 47% (age-equivalent and chronological age groups respectively) of nonautistic children's laughs were voiced. And about half the autistic children produced only voiced laughs.

You can find some autistic and nonautistic laughs here.

In their discussion, Hudenko et al. put forward this view:

...children with autism routinely produce fewer types of laughs than typically developing children because their laughter is more closely linked to their internal experience of positive affect.

If this is so, then the autistic children in this study expressed more positive emotion--more genuine happy affect--in interacting with another person than did the nonautistic children. Hudenko et al. also refer to an earlier study which found, in the typical population, more positive responses to voiced versus unvoiced laughter. Nonautistics prefer voiced laughter.

Given prevailing standards in the autism literature (arising from prevalent standards of autism advocacy), no one should be surprised at how Hudenko et al. interpret their findings. The authors imply, in the absence of any evidence in this direction, that all this happy, genuine, engaging autistic laughter is unlikely to be socially "appropriate." Unfortunately, according to the authors, autistics "are not using laughter in a socially subtle manner." And here is the paper's unfounded concluding sentence:

In fact, by using laughter in a less social manner it may be that this expressive pattern actually contributes to the social deficits exhibited by children with autism instead of serving to facilitate connections with others.

But the story doesn't quite end there. I ran into Dr Hudenko at IMFAR because he and one of his colleagues had a poster (abstract is here), a follow-up of sorts. In this new and as yet unpublished study, recordings of voiced and unvoiced autistic and nonautistic laughs were played for 135 nonautistic college-aged students. The students were asked to rate their "affective response" to each laugh on a scale from strongly negative to strongly positive. In a different task, the students were asked whether each recorded laugh came from an autistic or nonautistic child.

The results? The students rated their responses to autistic laughs as being significantly more positive than their responses to nonautistic laughs. Interestingly, this held true even when voicing--whether laughs were voiced or unvoiced--was accounted for. And when asked to do so, the nonautistic students could tell autistic and nonautistic laughs apart. The students performed above chance on this task, while only about one-fifth of them believed they could make this distinction.

So Hudenko et al. (in press) contend that autistics' way of laughing is defective and detrimental--a presumed contributor to autistics' presumed social deficits. This in turn implies that ideally, autistics would not have such engagingly positive, genuine and distinctive laughs, and instead should have the only "right" kind of laughter, the kind which characterizes nonautistics. But according to Dr Hudenko's IMFAR follow-up study, "improving" autistics this way would result in their laughter being less preferable to nonautistics than is currently the case.

Reference:

Hudenko, W., Stone, W., & Bachorowski, J. (2009). Laughter Differs in Children with Autism: An Acoustic Analysis of Laughs Produced by Children With and Without the Disorder Journal of Autism and Developmental Disorders DOI: 10.1007/s10803-009-0752-1

Addendum: This post is included in the 5th edition of Scientia Pro Publica (more information here), hosted by Pro-Science.

Saving autistics and the world: Skin shock at the 2009 ABA convention

2009-05-17T12:00:00.008-05:00

The press release for the 2009 Association for Behavior Analysis International convention claims that behaviour analysis "Reveals Methods for Solving Global Issues." There is a list of "major topics at the convention" which include:

How behavior analysis will help save the planet... How behavior analysis will help save the economy... How behavior analysis will help save lives... How behavior analysis will help us understand each other...

Autism is modestly mentioned in the third topic only (lives will be saved), even though claims that behaviour analysis can save the economy by saving children from autism are as common as they are unfounded in existing published evidence.

Looking around the 2009 ABAI convention program, you will in fact bump into the notion that ABA can, and should, save the world. For instance, from Tutorial #287:

This presentation will inspire a reconsideration of how ABA can save the world... the presenter will discuss the relevance of courage and compassion in realizing the potential of ABA to save the world...

Symposium #403 at this year's ABAI convention is chaired by Matthew Israel (Judge Rotenberg Center), and is titled:

The Use of Contingent Skin Shock in Treating Behaviors Other than Aggression and Self-Abuse

The three presenters in Symposium #403 are all from the Judge Rotenberg Center. Nathan Blenkush, BCBA-D (this is the highest status certification for behaviour analysts currently available), describes his presentation this way:

There are a number of topographies of problem behaviors that are intractable to standard behavioral and pharmaceutical interventions that cannot be classified as aggressive or self-abusive behaviors. In this presentation, we will describe the successful treatment of a variety of intractable behaviors using Contingent Skin Shock. First, we will review the literature associated with the use of CSS to treat non-aggressive and non-self injurious behaviors. Second, we will discuss how problem behaviors such as property destruction, major disruption (e.g. yelling, tantrums,), noncompliance or any other behavior in excess can severely harm students and completely interfere with treatment, education, and social development. Finally, we will present a series of case studies that will illustrate the use of CSS to treat these types of behaviors. Finally, we will discuss the treatment of these behaviors within the framework of the right to effective treatment.

Robert Von Heyn, BCBA-D, describes his presentation this way:

We describe the use of supplementary Contingent Skin Shock (CSS) to address intractable behaviors other than aggression and self-abuse. From 2003 to 2006, CSS was added to the programs of 72 students. However, in June of 2006, the New York State Department of Education put into effect regulations that limited the use of skin shock to aggressive and self-injurious behaviors. Subsequently, a federal judge temporarily blocked these regulations at the request of the parents and treatment resumed for most of these students. Here we first describe the initial effect of adding CSS to the students programs. Second, we describe the effect of the temporary suspension of the treatment for behaviors such as major disruption, property destruction, and noncompliance. Third, we describe how the regulations affected the treatment of problem behaviors such as aggression and self-abuse. Finally, we describe the effect of the reintroduction of CSS treatment, following intervention by a federal judge, for destructive, major disruptive, and noncompliant behaviors.

And Nick Lowther describes his presentation this way:

In June of 2006, the New York State Department of Education put into effect a set of regulations related to the use of aversive interventions such as Contingent Skin Shock (CSS). The regulations limited the use of CSS (and other procedures such as mechanical restraint) only to aggressive and self-injurious behaviors. The regulations also placed a number of other restrictions on the use of procedures such as CSS. However, after 9 weeks, in September of 2006, a federal judge temporarily blocked these regulations at the request of the parents. In this presentation, we discuss the impact these regulations had on the students at the Judge Rotenberg Center. In addition, the history of this lawsuit will be discussed. Finally, we will provide an update regarding the current status of the suit.

Symposium #403 comes with a written "Purpose," which adds little to the above except the false information that existing evidence supports the use of contingent electric shock for some behaviours. It is true that the current edition of the major ABA textbook (Cooper et al., 2007) promotes the use of electric shock with developmentally disabled people. But setting aside ethical issues which should not be set aside, Cooper et al. (2007) cite no good quality evidence arising from good experimental design, or anything even close, in support of this practice. In this major ABA textbook, very poor standards of science and ethics, which are known to harm human beings, coincide and are promoted as what autistics and other developmentally disabled people deserve.

In contrast there are scientists who, at least in some instances, have regarded autistics and other developmentally disabled people as deserving the benefit and protection of recognized standards of science and ethics. These scientists have unsurprisingly revealed the extremely well-established and well-recognized (outside of autism and ABA areas) importance of good experimental design (Tyrer et al., 2008; abstract is here, short description here).

I will not be attending the 2009 ABAI convention. The publicly available statements by the JRC presenters, two of whom are BCBAs at the highest level, are provided unedited here to speak for themselves. While the JRC's specific practices are the subject of controversy in some quarters, their stated standards are widely promoted as the only way to save autistics, and are not in any way unique to the JRC.

References:

Cooper, J.O., Heron, T.E., & Heward, W.L. (2007). Applied behavior analysis: Second edition. Upper Saddle River, N.J.: Pearson Prentice Hall.

Tyrer, P., Oliver-Africano, P.C., Ahmed, Z., Bouras, N., Cooray, S., Deb, S., Murphy, D., Hare, M., Meade, M,, Reece, B., Kramo, K., Bhaumik, S., Harley, D., Regan, A., Thomas, D., Rao, B., North, B., Eliahoo, J., Karatela, S., Soni, A., & Crawford, M. (2008). Risperidone, haloperidol, and placebo in the treatment of aggressive challenging behaviour in patients with intellectual disability: A randomised controlled trial. Lancet, 371, 57-63.

The autism recovery story

2009-05-14T15:23:00.007-05:00

You have seen the autism recovery story in the media. Bloggers have jumped in too. I was at IMFAR 2009 in Chicago and saw the educational symposium presentation by Deborah Fein that was the stated cause of all the excitement.

But in her presentation, as in her abstract, Dr Fein did not associate the findings she reported with any kind or quantity of autism intervention or treatment. When speaking at IMFAR, she expressed doubt that this in fact could be done.

Dr Fein clearly added more information when speaking with the media. She expressed her view that recovery from autism, what Dr Fein calls "optimal outcome," was associated with early intensive ABA-based autism interventions. Like all researchers, she is free to say what she wishes to the media.

However, her statements relating kinds and amounts of intervention to outcomes in autistic children are not supported by any of the data she chose to present at IMFAR 2009, either in her oral presentation or in a series of related posters.

Indeed her study design does not permit any conclusions about effectiveness of interventions, no matter how "effectiveness" is defined. She has not conducted a true experimental design in which well-known sources of bias can to some degree be accounted for and therefore the effects of interventions, their benefits and harms, can usefully be assessed.

In order to claim that conclusions can be drawn about the effectiveness of interventions in Dr Fein's study, as it has been presented, you have to be willing to reject and discard even the most basic standards of science. These are the basic standards that automatically protect and benefit nonautistics, the basic standards that were developed because without them people were harmed.

Two other aspects of what Dr Fein presented at IMFAR 2009 are noteworthy. One is that a major paper in the literature, published not long ago, reported a very high rate of what is now being called recovery from autism. To my knowledge, this paper did not make headlines.

Turner and Stone (2007) were looking at the stability of autism diagnosis at around age two years (mean age of 29 months). They carefully used various combinations within what is considered the gold-standard diagnosis: ADOS, ADI-R, and clinical judgment. And they found that early diagnosis, in their sample of 48 originally autistic children, was very unstable.

By age four (mean age of 53 months), only 53% of children originally given the specific diagnosis of autism retained this specific diagnosis, while only 68% were still on the autistic spectrum. The rest were not. That is a 32% rate of "recovery." Only 40% of children originally diagnosed with PDD-NOS at age two still had an autistic spectrum diagnosis by age four. That would be a 60% rate of "recovery."

The children whose age two diagnoses were unstable were largely still regarded as having difficulties, a finding that echoes Dr Fein's work, but they no longer could be diagnosed as autistic.

Turner and Stone (2007) attempted to associate instability of diagnosis (what is being called "recovery") with interventions received, but no association was found. They report:

All children in the sample received speech therapy, and the majority received additional interventions. There were no significant differences between the Stable and Change groups for the amount of speech therapy, t(46) = .30, p = .77, behavioral therapy, t(46) = .78, p = .44, occupational therapy, t(46) = 1.90, p = .06, special education, t(46) = 1.96, p = .06, or regular preschool, t(46) = .13, p = .90. Of the 6 children who received an average of 20 or more hours of intervention per week, 5 were in the Stable group and 1 was in the Change group.

In other words, few of the 48 originally autistic children in this study received what would be considered "intensive" intervention, and the majority of those who did kept their autism diagnosis.

In contrast, Turner and Stone (2007) found that diagnostic instability was related to earliness of diagnosis: the earlier the diagnosis, the more unstable it was.

The authors go on to discuss what may underlie the diagnostic instability they found while using the best available diagnostic standards. In fact there are many possible explanations. One point they do underline, however, is that given their findings,

...extreme caution must be taken when interpreting intervention findings that suggest ‘cures.’

And of course that would include intervention findings that suggest "recovery." This may be all the more so when diagnosis, and therefore intervention, is very early.

Also noteworthy is Dr Fein's use of the term "optimal outcome," a term she prefers to "recovery." Dr Fein and her colleagues have determined the criteria for optimal outcomes in autism, and these criteria assume that autistics who remain autistic are suboptimal. Remaining autistic is an undesired, unsatisfactory, inferior, suboptimal result.

According to Dr Fein, and those enthusiastically promoting her views, we know what an optimal human being is like, and this optimal human being is not autistic. An optimal outcome is not Stephen Wiltshire or Alex Bain or Daniel Tammet or Derek Paravicini or Hugo Lamoureux or Vernon Smith or Richard Bocherds or Danny Melvin or Tony DeBlois or janet norman-bain or Jessica Park or Temple Grandin or the large proportion of autistics found recently to have exceptional skills (Howlin et al., 2009) or me for that matter.

Indeed, Dr Fein's group has proposed loss of exceptional autistic skills as evidence for optimal outcomes. And given the great support Dr Fein's views have received, we should be in little doubt as to the goals of popularly demanded autism interventions, and the consequences for those of us who for whatever reason remain unrecovered. The decision as to which kind of human being is optimal and which kind is not has been made.

References:

Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2009). Savant skills in autism: psychometric approaches and parental reports. Philosophical Transactions of the Royal Society B: Biological Sciences, 364, 1359-1367.

Turner, L., & Stone, W. (2007). Variability in outcome for children with an ASD diagnosis at age 2 Journal of Child Psychology and Psychiatry, 48 (8), 793-802 DOI: 10.1111/j.1469-7610.2007.01744.x

A letter to the International Society for Autism Research

2009-05-13T12:38:00.010-05:00

The following letter was forwarded to an INSAR (International Society for Autism Research) official...

To the INSAR Board of Directors:

I am a full INSAR member who has attended the International Meeting for Autism Research (IMFAR) every year since 2004. Starting in 2007, IMFAR sponsors have been given prominent free time in plenary sessions to say whatever they wish.

This practice is problematic in itself, but what is worse is that no questions are allowed when sponsors speak. Unlike every other speaker who presents at IMFAR, sponsors are considered to be above any kind of questioning or criticism.

This should not happen at a research conference. Nobody should be able to buy time to say whatever they wish, then refuse to take questions.

My suggestion is that if sponsors are to be given such a prominent place in the IMFAR schedule, they should be required to answer questions about the information and positions they put forward.

Regards,

Michelle Dawson
Autism Specialized Clinic
Riviere-des-Prairies Hospital
University of Montreal

Autistic strengths at IMFAR 2009

2009-05-11T10:12:00.002-05:00

The International Meeting for Autism Research was held in Chicago this year, from May 7-9. This was the biggest IMFAR to date, with more than 1350 attendees. IMFAR is organized by the International Society for Autism Research; the main purpose is to provide an opportunity for researchers across all autism-related fields and from around the world to meet once a year and exchange information.

You can find the IMFAR 2009 program and abstracts, in different formats, via this page. Archives of abstracts from previous years can be found here.

This year I was involved in two abstracts. You can find them here and here. The first is below; the information in this abstract was updated, and therefore was slightly different, in the IMFAR poster we presented.

------------------------------------------------------

Where Autistics Excel: Compiling An Inventory of Autistic Cognitive Strengths

M. Dawson & L. Mottron, Centre d'excellence en troubles envahissants du développement de l'Université de Montréal (CETEDUM), Montréal, QC, Canada

Background: Until recently, there has been little interest in autistic cognitive strengths. Instead, autistic strengths revealed through comparisons between the performance of autistic and nonautistic individuals on various tasks have been largely reported or interpreted as evidence for autistic cognitive deficits (Baron-Cohen, 2005; Gernsbacher et al., 2006; Mottron et al., 2008). Also, there is currently no compilation of empirically documented autistic cognitive strengths as reported in the existing literature. Accordingly, little is known about the full range and quantity of autistic cognitive strengths or the variety and number of autistic individuals in which these strengths have been found.

Objectives: Our aim was to further understanding of cognitive strengths in the autistic population by identifying, quantifying and characterizing existing studies reporting these strengths.

Methods: We located and characterized papers published in peer-reviewed journals which reported autistic cognitive strengths. In order to be included, studies had to compare the performance of autistics to the performance of nonautistics on a task, and autistics had to be reported to perform better than their controls on the task. Studies specific to autistic savants and hyperlexics were excluded, as were probable but unclear reports of autistic strengths, and accidental findings arising from matching strategies. Autistic cognitive strengths originally reported and/or interpreted as deficits were included.

Results: In total, 52 distinct types of autistic cognitive strengths were found, reported in 71 papers (12 reporting two or more strength types) spanning from the 1970s to the present. Only 13 papers published prior to 2000 reported strengths, but at least five papers reporting strengths have been published every year starting in 2000, with the highest number per year in 2008 (N=13). Twelve of the 52 strength types were reported in at least two, and up to 10, papers, with the most replicated finding being superior performance in embedded figures tasks. While most strengths (N=36) were found via tasks using nonsocial information, several strengths involving social information (N=8) and language (N=7) were reported. Sample size for autistic groups ranged from 3 to 40, with a mean of 16, while mean age of autistic participants within samples ranged from 2 to 39 years. Total number of autistics, encompassing 81 different samples, was 1351, of whom 885 had the specific diagnosis of autism, while 130 were diagnosed with Asperger syndrome, and 336 were in the general “ASD” category. Of the 71 papers, 25 included autistic individuals judged to be intellectually disabled according to commonly used instruments, and 29 reported or interpreted one or more findings of autistic cognitive strengths as one or more deficits.

Conclusions: Numerous distinct autistic cognitive strengths, some of them highly replicated, in a wide range of areas, and displayed by a large number and great variety of autistic individuals, have been reported in the literature. Failing to acknowledge the importance of autistic cognitive strengths may impede efforts to understand autistic differences and assist autistic individuals. We recommend more consistent and transparent reporting and interpretation of autistic cognitive strengths and more attention to their importance.

Autism and talent: Why?

2009-05-02T10:04:00.017-05:00

Last year, the British Academy and Royal Society held a two-day discussion meeting called "Autism and Talent" which became the basis for a recently published wide-ranging special issue of the journal Philosophical Transactions B.

Francesca Happé and Uta Frith, who organized the discussion meeting, write in the special issue's editorial that although "the association of autism with special talent, sometimes at the highest level, cannot be denied" it remains true that "special talents are still less researched and less well understood than other features of autism."

The long-standing lack of interest in what autistics do well is understated. For example, the commonly reported estimate that 10% of autistics have savant abilities dates back to a book chapter, involving an informal parent survey, published more than 30 years ago. If anything, the "Autism and Talent" special issue highlights the current, ongoing state of ignorance about the strong abilities that have been noted in autistics from the outset (Kanner, 1943; Asperger, 1944/1991; Scheerer et al., 1945).

In their special issue paper, Pat Howlin and her colleagues use very conservative methods to find exceptional skills in about one-third of a group of autistics originally diagnosed between 1950 and 1985. While noting this is "likely to be an underestimate," the authors can only ask, about the "particularly high" "rate of such unusual talents or skills" in autism,

"Why?"
Sixty-some years after unusual autistic abilities were first highlighted in the literature, their extent, nature, and importance remain strikingly neglected as subjects of research. This neglect and consequent ignorance is evident in the special issue. Throughout questions are raised that have long been deemed unimportant or irrelevant and so have largely gone unasked never mind unanswered.

In her paper, Pamela Heaton illuminates the price autistics pay for this long history of willful neglect and ignorance. She points to fascinating new evidence about autistics' advantage in perceiving musical timbre, adding to a wide body of work showing enhanced auditory pitch processing in autism. She shows that autistics "who do not meet criteria for savant skills... nevertheless possess considerable, but often unexploited, musical potential." And she concludes that autistics are being denied opportunities to develop their strong interests and abilities.

Our paper in the special issue (Mottron et al., 2009) proposes ways in which autistics' measurably atypical cognitive processes may--given the opportunity--lead to the development of savant abilities, which we see as autistic expertise. Again we have to note the fall-out from researchers' long-standing indifference to how autistics learn well:

However, it must also be acknowledged that the information autistics require in order to choose and generalize any given interest is likely to be atypical in many respects (in that this may not be the information that non-autistics would require), and may not be freely or at all available. In addition, the atypical ways in which autistics and savants learn well have attracted little interest and are as yet poorly studied and understood, such that we remain ignorant as to the best ways in which to teach these individuals (Dawson et al. 2008). Therefore, a failure to provide autistics or savants with the kinds of information and opportunities from which they can learn well must also be considered as explaining apparent limitations in the interests and abilities of savant and non-savant autistics

This account is in keeping with the failure of researchers to find consistent predictors of outcome among the characteristics of autistic individuals on which researchers have concentrated their attention (Howlin, 2005).

Kate Plaisted Grant and her colleague Greg Davis highlight in their paper, as we do in ours, how profoundly atypical autistic minds are. They conclude there is much to gain, for autistics and nonautistics, in acknowledging, understanding and encouraging autistics' strong abilities:

Research such as that described here makes this important point: savant abilities are relatively rare, but the skills observed in individuals with ASCs [autistic spectrum conditions] in many studies are common among the population with ASCs. These skills need as much training and encouragement as is given to any individual with talent in detailed processing, mathematics, engineering, design and so on. With such dedicated training, society, business and industry will reap the great benefits of the unusual minds of individuals with ASCs.

The "Autism and Talent" discussion meeting and special issue, as well as a more recent British Academy and Royal Society panel discussion on the same subject, are small steps in the right direction. For much too long, autistics' strong abilities have been prejudicially regarded and treated as aberrant and dysfunctional excesses and deficits, which only impede the acquisition of socially-valued typical behaviours. Sixty-some years on, long overdue recognition of the importance of autistics' strong abilities is finally emerging. So is interest in how these abilities might be encouraged--rather than eliminated.

References:

Asperger, H. (1944/1991). 'Autistic psychopathology' in childhood (Frith, U., Trans.). In: Frith, U.(Ed.), Autism and Asperger Syndrome (pp. 37-92). Cambridge, UK: Cambridge University Press.

Dawson, M., Mottron, L., & Gernsbacher, M. A. (2008). Learning in autism. In J. H. Byrne (Series Ed.) & H. Roediger (Vol. Ed.), Learning and memory: A comprehensive reference: Cognitive Psychology (pp. 759-772). New York: Elsevier.

Heaton, P. (2009). Assessing musical skills in autistic children who are not savants Philosophical Transactions of the Royal Society B: Biological Sciences, 364 (1522), 1443-1447 DOI: 10.1098/rstb.2008.0327

Howlin, P. (2005). Outcomes in autism spectrum disorders. In: Volkmar, F.R., Paul, R., Klin, A.,Cohen, D. (Eds.), Handbook of Autism and Pervasive Developmental Disorders (pp. 201-220). Hoboken, NJ: Wiley.

Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2009). Savant skills in autism: psychometric approaches and parental reports Philosophical Transactions of the Royal Society B: Biological Sciences, 364 (1522), 1359-1367 DOI: 10.1098/rstb.2008.0328

Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217-250.

Mottron, L., Dawson, M., & Soulières, I. (2009). Enhanced perception in savant syndrome: Patterns, structure and creativity. Philosophical Transactions of the Royal Society B: Biological Sciences, 364, 1385-1391.

Plaisted-Grant, K., & Davis, G. (2009). Perception and apperception in autism: rejecting the inverse assumption. Philosophical Transactions of the Royal Society B: Biological Sciences, 364, 1393-1389.

Scheerer, M., Rothmann, E., & Goldstein, K. (1945). A case of “idiot-savant”: An experimental study of personality organization. Psychological Monographs, 58, 1-63.

Elizabeth Svoboda's autism culture movement: A letter

2009-04-27T06:26:00.008-05:00

Dear Ms Svoboda,

I've read your article about the so-called "autism culture movement," something I am not involved in. In this article my actions are falsely characterized then commented on. At no point was I contacted or interviewed.

Apart from placing me in a movement I don't belong to, and falsely characterizing me as a "crusader," you misrepresent both the nature of Auton and my role in it. In Auton at the Supreme Court of Canada, I opposed both sides, and both sides opposed my intervention.

My position in Auton was about autistic people in Canada who, like me, have not received ABA-based interventions starting very early in life (for many reasons, including that we are too old). This would be most autistic people in Canada. Both sides in Auton, as well as the lower court decisions, dehumanized and wrote off this majority of autistics as doomed, as undeserving of consideration as human beings with human rights, and as belonging not in families or society but in institutions.

My stated role in Auton at the SCC was as one autistic person. Through the lower courts and up to the Supreme Court of Canada, both sides in Auton, as well as the lower court judges, agreed that not one autistic person should have a say in the proceedings--proceedings which engaged Canada's highest law, our Charter of Rights and Freedoms.

Starting before the Auton SCC hearing in 2004, I made my position in Auton fully public, posting online all relevant documents. My intervention was based on the lower court decisions, the 5,000-page evidentiary record, and the applications, responses, replies, and/or written and oral arguments of the parties and other interveners. That is, I was responding to the case as it existed as a Charter case (engaging Canada's highest law, our Charter of Rights and Freedoms), not to some generic demand for ABA services. As with interventions by others in many other cases, the purpose of my intervention was to provide the Court with information it did not already have.

The SCC decision was not based on my intervention but on the failure of the Auton parents to make their case. The premise of the Auton parents was that all "medically necessary" services in Canada are publicly funded for everyone, but this premise is false. Because of this and other major errors on their part, the Auton parents lost. My intervention is mentioned in the SCC decision (though not very accurately), so it was likely influential in some way, possibly in alerting the Court that the two sides in this case--which entirely agreed with each other in excluding, dehumanizing and writing off autistics--were not the whole story.

In your article it is falsely and uncritically assumed that US and Canadian laws and ABA-related legal issues are the same. This is not the case. The way laws have been used in ABA litigation differs by country and has changed across time, with numerous contradictory claims being made (one example here). In Canada, ABA litigation has engaged virtually all of Canada's major human rights laws. The legal status of autistics in Canada has been determined almost entirely through ABA litigation and autistics daily live the consequences.

While I have learned a lot since 2004, the basis of my position in Auton is still the position I take now. Here it is:

1. Autistics are human beings with human rights.

2. Autistics deserve to benefit from and be protected by recognized standards of science and ethics, including professional ethics. These are the standards that automatically protect and benefit nonautistics, and without which they could not proceed safely in society, much less have good outcomes.

3. Services for autistics, whatever those services may be, should be asked for accurately (with respect to the existing scientific literature), ethically, and respectfully.

That's all. In Canada, those demanding ABA services have been unable or unwilling to do so accurately, ethically and respectfully. They could have chosen otherwise. For example, they could have chosen to take the position that autistics deserve recognized standards of science and ethics. If they had, Canada would be a much different--better and safer--place for autistics.

My experience in human rights cases arises not from anything remotely related to the "autism culture movement" or any "crusade" as you falsely claim, but from my error in disclosing my diagnosis to my employer. This not only destroyed my (long, exemplary--according to my employer) blue collar career, it put me in danger. It took almost ten years and a lot of legal work to mitigate some of the damage.

I recently won the first autism-related case referred to the Canadian Human Rights Tribunal for a hearing. Because of jurisprudence arising from ABA litigation in Canada, particularly Auton, and how this enshrined legal status of autistics has influenced the Tribunal, I had to ask the Tribunal to rule on whether autistics were regarded as human under the Canadian Human Rights Act.

This was not "crusading," as you misrepresent it, much less anything related to any supposed "autism culture movement." The numerous actions taken by my employer in response to knowing I was autistic were so extreme (though they are typical of how autistics--the majority of us who have not undergone ABA programs starting early in life--are regarded and treated in Canada), I did not have much choice.

I've gone on to take the risk of testing my ideas about autism via peer-review, and to show what an uneducated autistic (who has the behaviours and lacks the basic skills routinely invoked to scare people about autism) can contribute to autism research, given the opportunity. My publication record is nothing special, but it is not too bad for someone who has never attended university as a student, who has truly spectacular day-to-day difficulties, and who has been written off numerous times.

I disagree with many of the statements made about ABA-based autism interventions in your article--on both supposed "sides." I have criticized as inadequate, inaccurate and harmful many of the popular criticisms of ABA-based autism interventions. I disagree with ASAN's overall position about ABA, which in many areas is poorly informed and ignores the major underlying issue of quality of intervention research. At the same time, ABA as an approach to autism has been defended by its promoters as though it were an ideology, as sacrosanct and above scrutiny and criticism. ABA is supposed to be a field of science. The poverty of how ABA-based interventions have been both criticized and defended demonstrates the poor standards of science and ethics that are routinely promoted as what autistics deserve.

If you asked, I would tell you that "cultural phenomenon" views of autism have been harmful to autistics, detracting from crucial issues of basic human rights and standards. You won't find "neurotypical" much less "curebie" in my writing, and I sometimes disagree with ASAN's public positions and recommendations (for example, with respect to ABA-based autism interventions and autism research priorities). I have never claimed to represent other autistics, unless individual autistics have specifically given me this privilege.

At the very basic level where I function, representation is beside the point. The issues that matter involve attempts, by those promoting ABA-based interventions and others similar, to remove the basic human rights of autistics (for example, those of us who have not undergone ABA programs starting early in life), and to deny us recognized standards of science and ethics. Anyone is free to deny their own basic human rights, and to deny themselves the basic standards that exist to protect and benefit everyone. But denying basic human rights and basic standards to others is another story.

I wrote virtually nothing about "neurodiversity" until those unfamiliar with my work persistently associated me with it. In response I defined neurodiversity as part of the general idea that disabled people should have human rights--mainstream and noncontroversial except when the disabled people are autistic. I suspect people on both supposed "sides" disagree with this definition, but I don't have a "side," much less a "crusade" and do not have what it takes to be part of any "movement" much less a cultural one.

The standards currently applied to autistics are such that you are free to misrepresent me, and major legal decisions and issues, and so on, all you want. There's nothing I can do except put accurate information on the record, again, even though it has been here all along, for anyone who takes autism seriously.

Regards,

Michelle Dawson
Autism Specialized Clinic
Riviere-des-Prairies Hospital
University of Montreal

Postscript: Sharon at The Voyage blogs about "Autism Culture in Salon."

Autism under the sun: Epidemiology from Aruba

2009-04-25T12:28:00.008-05:00

A recently epublished paper reports autism epidemiology in Aruba (van Balkom et al., in press). The findings: autism prevalence of ~19/10,000 and autistic spectrum prevalence of ~53/10,000 (of which only ~2/10,000 Asperger individuals were identified). Because case finding methods were very conservative and limited, the authors state that:

These prevalence estimates should be considered minimum prevalence.

Even so, these figures are

similar to recent reports from the United Kingdom and the United States.

For example, the combined Chakrabarti and Fombonne (2001, 2005) studies reported autism prevalance of ~19/10,000 and autistic spectrum prevalence of ~61/10,000. Very similar figures from the UK were recently found by Williams et al. (2008). In fact the reported minimum autistic spectrum prevalence in Aruba is noticeably similar to reported autistic spectrum prevalence in the Faroe Islands (~56/10,000; Ellefsen et al., 2007).

I am no climatologist, but all available reports converge on Aruba, which sits not too far from the equator, being a remarkably sunny and dry place. This is not the case for the Faroe Islands, which have a cloudy, rainy, foggy climate where sunshine is rare.

Speculation that lack of sun exposure may cause autism via Vitamin D deficiency is back in the media, providing a reminder that Michael Waldman and his Cornell colleagues persist in claiming that less precipitation means fewer autistics. Aruba's recent autism epidemiology sheds some bright light on these hypotheses.

References:

Chakrabarti, S., & Fombonne, E. (2001). Pervasive developmental disorders in preschool children. JAMA, 285, 3093-9.

Chakrabarti, S., & Fombonne, E. (2005). Pervasive developmental disorders in preschool children: Confirmation of high prevalence. American Journal of Psychiatry, 162, 1133-41.

Ellefsen, A., Kampmann, H., Billstedt, E., Gillberg, I.C., & Gillberg, C. (2007). Autism in the Faroe Islands: an epidemiological study. Journal of Autism and Developmental Disorders, 37, 437-44.

Balkom, I., Bresnahan, M., Vogtländer, M., Hoeken, D., Minderaa, R., Susser, E., & Hoek, H. (2009). Prevalence of treated autism spectrum disorders in Aruba Journal of Neurodevelopmental Disorders DOI: 10.1007/s11689-009-9011-1

Waldman, M., Nicholson, S., Adilov, N., & Williams, J. (2008). Autism prevalence and precipitation rates in California, Oregon, and Washington counties. Archives of Pediatrics and Adolescent Medicine, 162, 1026-34.

Williams, E., Thomas, K., Sidebotham, H., & Emond, A. (2008). Prevalence and characteristics of autistic spectrum disorders in the ALSPAC cohort. Developmental Medicine and Child Neurology, 50, 672-677.

Definitely not autism advocacy: the People First ribbon

2009-04-06T15:10:00.009-05:00

People First attended the recent autism conference in Halifax, where their work was featured in my presentation. Here is the information People First provides with their black and yellow ribbon pins:

We wear these ribbons to let Canadians know that too many people are still locked in institutions.

We are horrified that Canadians keep institutions open. We are angry that new kinds of institutions are being built.

The black ribbon is because people in institutions are not safe. Many have died. We mourn their deaths.

The yellow ribbon is for liberation--we want all people in institutions to step into freedom.

All people regardless of the severity of their disabilities should live in the community with the support they need.

Here is how People First defines institutions:

An institution is any place in which people who have been labelled as having an intellectual disability are isolated, segregated and/or congregated. An institution is any place in which people do not have, or are not allowed to exercise control over their lives and their day to day decisions. An institution is not defined merely by its size.

Meanwhile, autism advocacy leaders in Canada have long insisted that autistics just naturally belong in institutions, a view which in consequence is enshrined in Canadian jurisprudence, under Canada's highest law:

Unless their condition is successfully treated, almost all autistic children are doomed to a life of physical, emotional, social, and intellectual isolation and eventual institutionalization - a tragic outcome for the children, their families, and society.

Here "successfully treated" means undergoing unlimited ABA-based autism interventions starting very early in life. Most autistics in Canada cannot meet this requirement, ergo autism advocates claim there is no choice except to lock us in institutions for our own good and the good of society. Canada's most powerful autism advocacy organization, FEAT (also known as "Medicare for Autism Now!"), adds that we must live in restraints and have our teeth pulled.

Canadian Senator Jim Munson, who has publicly supported FEAT, has used his power and influence to make it widely known that autistics' natural place is not in society or communities or families or the workplace but in institutions. Like other leading autism advocacy organizations and individuals, Senator Munson is insulting and undermining the very important hard work and achievements of People First.

Autistic children in tiny, windowless rooms

2009-03-10T12:36:00.005-05:00

Two UK sources, here and here, report the same story: a young autistic girl, Melanie-Rose Wichmann, was "shut in a tiny, windowless room for getting upset at school." She "begged to be let out." She "has suffered anxiety attacks since the incident in February last year."

A judge ruled that shutting Melanie-Rose in that "tiny, windowless room" was discrimination based on her disability. An autistic child "should not have been left, even briefly and for the best of motives, alone in a small room from which she could not get out."

Melanie-Rose's mother is quoted as saying: "I know that despite what anyone says, regardless of their disability, you don't treat children like this. I wanted to fight this no matter what. I wanted to fight for her and for all the other kids out there in similar situations."

Not so long ago, the Boston Globe reported on practices at the New England Center for Children, a school that uses ABA-based interventions with autistic individuals. The NECC is one of the most admired, most popular, most important, and most influential (in research and practice) ABA schools in the world. Here is how the Boston Globe story starts:

When a particular student acts up, Amy Giles sometimes places the girl in a tiny, windowless room and closes the door. Then Giles stands outside the closet-like chamber, waiting patiently until the child settles down.

If it were another child, it might seem cruel. But Giles, a Westborough resident, is probably that student's best chance for a quality education. Giles teaches at the New England Center for Children on Route 9 in Southborough, a school that is at the forefront of educating children with autism, a neurological disorder that dramatically inhibits the way a child learns.

"We don't want to be the biggest program for autism," said Judy Cunniff Serio, director of administration. "We want to be the best."

Smallpox, polio, and autism

2009-03-05T22:01:00.001-05:00

A few days ago, Canada's senators were debating a law about autism. According to Senator Wilbert J. Keon, this proposed law, Bill S-210, would establish "World Autism Awareness Day in Canada, to be celebrated each year on April 2."

Senator Keon states:

Through the passage of this bill, we are showing that we truly respect Canadians with autism.

And what is the direction and purpose of this proposed Canadian law, a law to raise autism awareness, by which our government is to show that it truly respects autistic citizens? Senator Keon explains:

We must now do the necessary research to understand what autism is; then we must eliminate it as we did with smallpox and polio.

So parliament's power will be used to spread awareness--to inform schools, families, employers, communities, landlords, governments, and so on--that autism is as frightening and harmful, as dangerous to society and the public good, as smallpox and polio. And just like smallpox and polio, autism must be eliminated--regardless of science and ethics, regardless of the wishes of autistics and/or parents of autistics. According to Senator Keon, who demands a Canada free of autistic people, this is the kind of awareness Bill S-210 is all about.

Revisiting the costs of autism

2009-02-02T09:00:00.003-05:00

Michael Ganz of Harvard has published two papers about the costs of autism, a book chapter in 2006 and a peer-reviewed paper in 2007. Media attention followed, including a 2007 Globe and Mail story under the headline "Autism a lifelong burden, study shows."

Dr Ganz's work was embraced by leading autism advocates in Canada, as evidence that unlimited ABA-based autism interventions must be funded by governments, or else staggering costs to society will ensue. Here is leading autism advocate Harold Doherty, writing in 2007 in response to Dr Ganz's work:

"In Canada the courageous parents who litigated the Connor Auton case started telling government over a decade ago that the financial burden to society down the road would be tremendous if early ABA intervention was not provided intensively right away and funded."

Here is Senator Jim Munson, leading autism advocate, as reported by CBC, also in 2007:

"Not providing ABA treatment is more expensive because it involves respite care, group homes and institutionalization, said Munson, who referred to a Harvard University study that put the annual cost of autism to Canada's economy at $3.5 billion."

Senator Munson again, from a 2007 speech:

"A recent study by Harvard University demonstrates that each child in the U.S. with autism will cost society about $3.2 million in medical and non-medical costs over his or her lifetime [1]. With the rising number of diagnoses of autism, the eventual costs will be staggering. We're in a situation where spending on treatment, even expensive treatment, is actually a savings."

The footnote [1] is to Dr Ganz's 2006 book chapter, and the sole treatment referred to by Senator Munson, as "proven to work," is ABA-based intensive intervention.

FEAT in Canada, which is also called "Medicare for Autism Now," is a powerful autism advocacy lobby group. FEAT demands that Lovaas-type ABA be mandated as medically necessary treatment for autism under the Canada Health Act. Here is FEAT in 2008:

"AUTISM is a North American health care epidemic of staggering proportions... The costs to the Canadian economy of NOT treating autism is $3.5 billion a year... the cost in human suffering is immeasurable."

While FEAT makes no direct reference to Dr Ganz's work, the $3.5 billion figure does not come from any existing Canadian study. According to the CBC, Senator Munson also used this figure and attributed it to Dr Ganz, and indeed this figure shows up in the Globe and Mail story about Dr Ganz's work that I referred to above. Dr Ganz's published work about the costs of autism does not make any mention of Canada, but Canada's leading autism advocates have apparently embraced an estimate based on Dr Ganz's US work and published only in a newspaper.

In any case, the premise of these leading Canadian autism advocates is the same. First, they use Dr Ganz's work as an occasion to unscientifically deny the existence of older autistics. Like many autism advocacy signature positions, this is an excellent way to ensure that many autistics will have very difficult lives and will be unlikely to have good outcomes. But Dr Ganz's work, if you read it, assumes a high, stable rate of autism.

Second, leading Canadian autism advocates cite Dr Ganz's work as evidence that government funding for ABA-based autism interventions is the only way to avoid the staggering costs of autism.

In the paper reporting his methodology, Dr Ganz does write about the costs of behavioural interventions for autism. From the "Behavioral Therapies" section of Ganz (2006):

"Although it is not completely clear how effective different types of behavioral interventions are for children with autism, it is rather well accepted that some type of intervention should be initiated. Because their use is becoming more pervasive and as more states are legislating that behavioral therapies become covered services as part of health insurance plans, their costs are included here."

Then Dr Ganz goes on to describe the possible benefits of these interventions:

"However, as the estimates of effectiveness, and hence the financial and nonfinancial benefits, are controversial and because the correspondence between improvement in symptoms and the costs of these interventions are not clear, only the costs of the intervention are enumerated here and are not offset by potential benefits."

Dr Ganz provides a range of references to support the above statements. The upshot is that according to Dr Ganz's model, existing evidence for the effectiveness of behavioural interventions in autism is insufficient for any conclusion that these interventions have benefits, financial or otherwise. Instead, there is only sufficient evidence to conclude that these interventions have costs. This is the model on which Dr Ganz's 2007 paper is based, as is directly stated in the paper.

So autism advocates who promoted Dr Ganz's work about the costs of autism in reality promoted a study whose author concluded that the effectiveness of ABA-based autism interventions has not yet been established, such that no benefits for this kind of intervention can be claimed. As often happens, the question arises as to whether autism advocates read the study and misrepresented it, or did not bother to read it and made public claims about it anyway. Those who are not enamored with autism advocacy standards, and who are genuinely concerned about the future of autistics, will take the trouble to read the primary sources and will draw their own conclusions.

References:

Ganz, M. (2006). The costs of autism. In S.O. Moldin & J.L.R. Rubenstein (Eds.), Understanding Autism (pp. 475-502). Boca Raton FL: Taylor & Francis.

Ganz, M. (2007). The lifetime distribution of the incremental societal costs of autism. Archives of Pediatrics and Adolescent Medicine, 161, 343-349

Verbatim: About autism severity

2009-01-29T10:05:00.004-05:00

This episode of Verbatim finds autism researchers and clinicians wrestling in various ways with the (apparently) elusive concept of autism severity:

Note that in several cases, formal criteria for Autistic Disorder were met but a diagnosis of PDD-NOS or Asperger’s Disorder was given to the family. The reason for this was that the child had previously been given a diagnosis of PDD-NOS or Asperger’s and had continued to improve so that symptoms were fewer or milder than they had been. It was considered to be counterproductive to give the parents a more severe diagnosis when the child had actually shown significant improvement, and in many cases, the symptoms were present but in relatively mild form. (Kelley et al., 2006)

Indeed, in some ways, children with AS [Asperger syndrome] are more severe than those with autism as the discrepancy between their intellectual potential and their actual adaptation in terms of socialization and communication is so very marked; they look so "normal" but their behavior is so "odd." There is also some evidence that adolescents with AS have more symptoms of anxiety and depression than do children with autism (Szatmari et al., 1989), although the mechanism for this finding may only be that they have the ability to communicate their distress more readily. In this context, they have the more severe disorder because they have better communcation skills. It all depends on what dimension of severity one is talking about. (Szatmari, 2000)

References:

Kelley, E., Paul, J.J., Fein, D., & Naigles, L.R. (2006). Residual language deficits in optimal outcome children with a history of autism. Journal of Autism and Developmental Disorders, 36, 807-828.

Szatmari, P. (2000). Perpectives on the classification of Asperger syndrome. In A. Klin, F.R. Volkmar & S.S. Sparrow (Eds.), Asperger Syndrome (pp. 403-417). New York: Guilford.

Szatmari, P., Bartolucci, G., & Bremner, R. (1989). Asperger's syndrome and autism: Comparisons on early history and outcome. Developmental Medicine and Child Neurology, 31, 709-720.

The origins of ABA-based autism interventions

2009-01-26T08:43:00.002-05:00

When it comes to behaviour analytic approaches to autism, the paper that started it all, and set the tone for what was to come, was Fuller (1949), the first published report of operant conditioning in a human being.

Fuller opens his paper by noting that classical conditioning had been tested in "normal and subnormal" humans. For example, it had been found that "subnormal" children formed conditioned responses to shock faster than "normal" children. But so far, operant conditioning had only been tested in animals ("infra-humans"). Fuller was given permission--no mention of by whom--to experiment on a person he described as an 18 year old "vegetative idiot" incarcerated in a "feeble-minded institution."

This person, referred to as "S," is reported never to move his trunk or legs, though no reason is given for this. According to Fuller, S had limited movement of his head, shoulders and arms, but couldn't roll over or change his position from where he was left lying on his back all day. S was never given solid food; liquids and semi-solids were "stuffed into his mouth," Fuller reports, while S coughed and choked. While Fuller writes that S never made any sounds, "in the course of the experiment vocalizations were heard."

Fuller's experiment started by depriving S of food for 15 hours. A syringe full of warm milk-sugar solution, which was squirted into the corner of S's mouth, was the reinforcer. A bit of this solution was given to S when he raised his right arm.

Eventually, S was conditioned such that after being deprived of food for five hours, he raised his right arm 19 times in 16 minutes. After this he fell asleep. The next morning, he raised his right arm and opened his mouth simultaneously. And while S had earlier also raised his left arm sometimes, by this point, he only raised his right arm.

Fuller declared success at this point, and then extinguished this response by removing the food reinforcer. The extinction procedure took 70 minutes, at which point S stopped raising his right arm. This completed the experiment.

Fuller wrote about S:

"An interesting feature of this study is the example it affords of phylogenetic overlap. While of normal human parentage, this organism was, behaviorally speaking, considerably lower in the scale than the majority of infra-human organisms used in conditioning experiments--dogs, rats, cats."

The physicians in the institution in which S had been an inmate (this word is used) for a year had reported to Fuller that S had not, in all his 18 years, learned anything at all. Fuller simply accepted this as true, even though he had no relevant information about S's history and minimal information about S's present. This allowed Fuller, and many behaviour analysts to follow, to be very impressed with what Fuller accomplished in conditioning S. After all, Fuller is reported to have trained a vegetative organism to move, a stunning and unprecedented achievement.

Along these lines, here is Fuller's conclusion:

"For years, many psychologists have experimented exclusively with infra-human [subjects], and they have expressed a preference for the simple, less variable behavior of the lower organisms in the laboratory. Perhaps by beginning at the bottom of the human scale the transfer from rat to man can be effected."

Fuller's "classic" paper, a landmark in the history of ABA, resonates with the much later words of Ivar Lovaas and his colleagues, about autistic human beings:

"You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense—they have hair, a nose and a mouth—but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person." (from an interview with Chance, 1974)

"In any case, what one usually sees when first meeting an autistic child who is 2, 3, or even 10 years of age is a child who has all the external physical characteristics of a normal child—that is, he has hair, and he has eyes and he has a nose, and he may be dressed in a shirt and trousers—but who really has no behaviors that one can single out as distinctively ‘human’. The major job then, for a therapist—whether he's behaviorally oriented or not—would seem to be a very intriguing and significant one, namely, the creation or construction of a truly human behavioral repertoire where none exists." (Lovaas & Newsom, 1976)

"To use another analogy, at the beginning of treatment, the children may be regarded as having close to a tabula rasa. In this sense they can be considered very young persons, as persons with little or no experience, presenting the teacher with the task of building a person where little had existed before." (Lovaas & Smith, 1989)

"Instead, the fascinating part for me was to observe persons with eyes and ears, teeth and toenails, walking around yet presenting few of the behaviors one would call social or human. Now, I had the chance to build language and other social and intellectual behaviors where none had existed, a good test of how much help a learning-based approach could offer." (Lovaas, 1993)

The currently predominant autism advocacy policy position that autistics can't learn, develop, communicate, progress, etc., or become human, except via ABA programs, reminds me of assumptions behaviour analysts have made about the nature of Fuller's S. They just know, like Fuller did, that S had never learned anything at all until Fuller came along. Fuller needed no evidence for this, or any information about S's past. He just knew there were subhumans in human form, including vegetative human organisms who were lower in the scheme of things than rats (and were treated as such). So all he had to do was to never, ever question any of this, and then go out and find one of these vegetative organisms and experiment on him. And so Fuller became famous, just like Dr Lovaas did later for "building" human behaviours in autistic children who he claimed had none at all, for "building" a person where he claimed none existed.

References:

Chance, P. (1974). "After you hit a child, you can't just get up and leave him; you are hooked to that kid": A conversation with O. Ivar Lovaas about self-mutilating children and why their parents make it worse. Psychology Today, 7, 76-84.

Fuller, P. R. (1949). Operant conditioning of a vegetative human organism. American Journal of Psychology, 62, 587-590

Lovaas, O.I. (1993). The development of a treatment-research project for developmentally disabled and autistic children. Journal of Applied Behavior Analysis, 26, 617-30.

Lovaas, O.I., & Newsom, C.D. (1976). Behavior modification with psychotic children. In H. Leiteberg (ed.), Handbook of Behavior Modification and Behavior Therapy. Englewoood Cliffs, NJ: Prentice-Hall.

Lovaas, O.I., & Smith, T. (1989). A comprehensive behavior theory of autistic children: Paradigm for research and treatment. Journal of Behavior Therapy and Experimental Psychiatry, 20, 17-29.

Autism in California: The MIND's new epidemiology

2009-01-15T17:16:00.011-05:00

The MIND's recently published autism epidemiology (Hertz-Picciotto & Delwiche, 2009) has been widely publicized (press release is here, typical media story is here), with the upshot that large increases in reported rates of autism are real rather than apparent and should be studied as such.

Bloggers have taken on several aspects of the MIND's new autism epidemiology (here, here, here, here, with more and a summary here) as well as discrepancies between the paper itself and how it has been promoted. I'm going to add just a few more points to consider.

This isn't the MIND's first crack at epidemiology. Their previous highly publicized but unrefereed report, described as "A Comprehensive Pilot Study," was shown, in a refereed paper (Gernsbacher et al., 2005), to suffer from "unwarranted conclusions" about the effect of changes in how autism is diagnosed on reported rates of autism.

So what's new, this time around? Hertz-Picciotto and Delwiche use census data to account for migration into California, so as to generate what they call incidence (rather than prevalence) figures. Also, they've included individuals identified as autistic, for the purpose of receiving services, before age three.

But the basis for the MIND's new epidemiology remains the same: the California DDS data. Turning DDS figures into incidence data doesn't alter the problem that DDS-type administrative numbers should not be used as epidemiology. The pitfalls of using service-based numbers have been explored formally in the literature (e.g., Laidler, 2005; Gernsbacher et al., 2005) and expressed less formally by an NIH official:

"I'll call a kid a zebra if it will get him the educational services I think he needs."
Hertz-Picciotto and Delwiche's inclusion of children identified in service records as autistic before age 3 raises the problem that early diagnosis of autism may be very unstable. In Turner and Stone (2007), only 53% of children diagnosed autistic at an average age of 29 months kept their autism diagnosis at an average age of 53 months. Diagnostic instability was related to earliness of diagnosis (the earlier the diagnosis, the less stable it was) but unrelated to interventions received.

Like Hertz-Picciotto and Delwiche's conclusions about changes in diagnostic criteria (pulled from an unrelated Finnish prevalence study; Kielinen et al., 2000), their conclusions about effect of including other autistic spectrum diagnoses (Asperger's and PDD-NOS, which the authors presume are "milder cases") do not arise from the incidence data they report. Instead, figures were taken from an earlier paper involving a specific (much smaller and narrower) sample of children recruited to study environmental causes of autism (Hertz-Picciotto et al., 2006).

According to Hertz-Picciotto and Delwiche, their study involves children with the specific diagnosis of autism only. The authors refer to "an International Classification of Diseases (ICD) code of 299.0 (autistic disorder)" (except of course this is a DSM-IV, not ICD, code and category), while assuming that children diagnosed with other autistic spectrum diagnoses do not meet ADI-R or ADOS cut-offs for autism or ASD (ADI-R has autism cut-offs only). This, the premise of the authors' analysis re what they presume to be "milder cases," doesn't stand up well to scrutiny.

For example, in Baird et al. (2006), 69% of children with non-autism autistic spectrum diagnoses met autism criteria on the ADI-R. This doesn't count Asperger children, who were lumped in with autistic children, virtually all (98%) meeting ADI-R autism criteria. In work I'm involved in, virtually all Asperger individuals (as virtually all autistics) meet all ADI-R and ADOS cut-offs for autism.

Also, in using the ADOS (which has, more recently, been revised again) and ADI-R, as well as clinical experience, Baird et al. (2006) produced a range of prevalence figures for children aged 9-10, from ~25/10,000 to ~116/10,000. That's a 4.6-fold discrepancy in the same sample at the same time with the same instruments and the same group of diagnosing clinicians.

Maybe there are other ways of exploring whether children receiving DDS autism services in the past are similar to children receiving these services more recently. In their unrefereed 2002 report, the MIND compared subsamples of children born from 1983 to 1985 with children born from 1993 to 1995. In the earlier subsample, 61% were judged to be in the range of intellectual disability, whereas in the later subsample, 27% were--a discrepancy noted by Gernsbacher et al. (2005).

More data about the entire population receiving DDS autism services are available. In a 1999 DDS report, graphed data show that whereas in 1987, ~84% of those receiving DDS autism services were judged to be in the range of intellectual disability, by 1998 that figure was 58%. A further look at DDS quarterly reports shows that by the beginning of 2002, that figure was 42%, and by the end of 2007 it was 33%. Between 1987 and 2007, the proportion of individuals receiving DDS autism services and scoring in the severe and profound ranges of intellectual disability dropped from ~36% to ~6%.

So--there are a few more reasons to question Hertz-Picciotto and Delwiche's conclusions about the effect of differences in how autism is defined and diagnosed. Also, there are many reasons to question the whole enterprise of trotting out DDS numbers yet again and pretending that, with enough distracting decorations stuck on, they in fact are epidemiology. After all, Hertz-Picciotto and Delwiche are denying the existence of older autistics, and they are doing this by using poor quality data dressed up in definitive conclusions. I would be much more cautious than Dr Hertz-Picciotto and her university have been, in going out in public wearing the MIND's new epidemiology.

Reference:

Irva Hertz-Picciotto, Lora Delwiche (2009). The Rise in Autism and the Role of Age at Diagnosis Epidemiology, 20 (1), 84-90 DOI: 10.1097/EDE.0b013e3181902d15

Where are the autism researcher bloggers?

2009-01-07T08:19:00.001-05:00

Of course there are bloggers blogging about autism, everywhere, in staggering if not epidemic numbers. But my question is about bloggers who are also autism researchers. Where are they?

Prominent academics, scientists and researchers who blog aren't hard to find, including Nobel and Fields Medal winners, major journal editors, and clumpings together of well-known figures in various areas of research. You can't go far in Science Blogs without colliding with NIH-funded researchers in various non-autism fields.

And there are many bloggers who blog about autism research, including researchers, clinicians and academics in non-autism areas. But I'm looking for autism researchers who blog, about any subject, but particularly about autism research. For my blog-searching purposes, "autism researchers" are those whose main field of research is autism and whose autism-related work has been published in peer-reviewed journals.

Apart from me, there is the postdoctoral fellow Lindsay Oberman, who sporadically blogs at Psychology Today. Back in 2006, New Scientist published a letter I wrote in response to an informal article authored by Dr Oberman. Michael Merzenich has been in the authorship of a few autism-related papers and also has a blog, but he has extensively published in non-autism areas and is not primarily known as an autism researcher.

The Hub blogger and behaviour analyst Interverbal promises to cough up some published research some day, for which I'm impatiently waiting. There are now other behaviour analysts who blog about autism, but those I have located are service providers, rather than researchers.

In the remarkably science-and evidence-free vaccines-cause-autism camp, there's Mark Blaxill, known for calling autism a "silent holocaust." Mr Blaxill has been in the authorship of a few published papers, and is the sole author of a 2004 review in which he beautifully demonstrated--without in the least noticing--that amount of thimerosal in routine childhood vaccinations is totally unrelated to prevalence of autism. Autism Diva was kind enough to give me the space to point out the obvious. Mr Blaxill blogs with his ilk at "Age of Autism," but who would call him an autism researcher?

So where are they, the autism researcher bloggers, and if there really are so few of us, why might this be? There is no shortage of researchers in the area of autism, and autism has been a high profile field for longer than there have been blogs. I've limited my blog reading to English-language blogs, and I've left out individuals who are involved in autism research but who haven't yet published any of this research in the peer-reviewed literature. So maybe my criteria are too limited. But where are--for example--any of the numerous well-known autism researchers I've seen at IMFAR year after year? Why aren't any of them bloggers? Can anyone point me to more autism researcher bloggers?

Do you copy? Autism advocacy standards strike again (a brief note in passing)

2008-12-31T05:10:00.003-05:00

Doreen Granpeesheh is a well-respected Board Certified Behavior Analyst who "serves on the Defeat Autism Now (DAN!) Executive Council," works at Andrew Wakefield's Thoughtful House, is on Autism Society of America's Board of Directors, and has won ASA's highest award. ASA is part of a collaboration of organizations which agree that there has been an epidemic of autism caused at least in part by vaccines.

Dr Granpeesheh is executive director of CARD (Center for Autism and Related Disorders), a high-profile organization which provides ABA services. CARD has recently started a blog, which apparently has gotten rave reviews from leading Canadian autism advocates (you know where to find them...). Of the few CARD blog posts I read, two gave me déja vu.

One is about ABA (see also the CARD website), and the other is about autism (see also the CARD website). Just at a glance, chunks of this writing are taken, without attribution, from the unrefereed MADSEC report, published in 2000. I also spotted an unattributed piece from the US Surgeon General's report, released in 1999. And that's only at a glance, which is all the time this is worth.

As I briefly showed in a presentation this year, pieces of the MADSEC report have often been copied without attribution, including by behaviour analysts--a practice that continues up to the present. So it seems those frequently copied, but infrequently attributed, "30 years" and "several thousand published research studies" that have "documented the effectiveness of ABA" haven't budged an iota in a decade. The MADSEC report covers papers published up to 1998; among those "several thousand published research studies," which sadly are not listed, not one single RCT of ABA-based autism interventions is cited.

Failing to attribute copied chunks of text may result in applause from leading autism advocates, and for all I know it may be good for business. But in my view, if you are going to copy someone else's writing, and put it on your website or blog, it's a very good idea to provide the source for this writing rather than passing it off as your own. This is true even if copyright is not an issue, and even if you have permission to copy someone else's work.

(This brief note is more like a TMoB message, but the TMoB board has gotten cranky about posts with more than a few links. If I've made any factual errors, I hope someone corrects me.)

An assortment of 2008 autism papers

2008-12-29T15:07:00.008-05:00

Here's a handful of interesting autism-related papers published in 2008, ranging across scales and subjects:

1. Autism and speech: Gernsbacher et al. (2008)

Why can't some autistic children speak? The remarkably few existing explanations for this high-profile phenomenon have collapsed under scrutiny. This embarrassing failure on the part of autism researchers was, at long last, addressed in 2008. Dr Gernsbacher and colleagues found "prominent associations among early oral- and manual-motor skills and later speech fluency" in a large sample of autistic children, who ranged from highly to minimally fluent. Early oral-motor skills are therefore crucial in explaining why some autistic children can't speak. What's more, associated manual-motor skills should be considered a confound in "assessing autistic cognition, receptive language, and ‘nonverbal’ social communication."

2. An effective intervention: Tyrer et al. (2008)

This was a multi-site RCT of three different interventions targeting "aggressive challenging behaviour" in intellectually disabled adults, a minority of whom were autistic. The authors found that haloperidol, risperidone, and placebo all resulted in rapid, dramatic and sustained decrease in the targeted behaviours. And while "no important differences between the treatments were recorded," after four weeks of treatment, "the greatest decrease was with placebo." The conclusion? "Antipsychotic drugs should no longer be regarded as an acceptable routine treatment for aggressive challenging behaviour in people with intellectual disability."

3. Absolute pitch for speech: Heaton et al. (2008)

In the past two years, Pamela Heaton and her colleagues have published a series of papers about enhanced perception of speech in autism. This case study goes a step farther in showing exceptional absolute pitch for speech in an autistic adult, AC, who has had little musical training. The authors found that "AC's naming of speech pitch was highly superior" compared with nonautistic controls who had absolute pitch--many of whom had extensive musical training. While delayed in his development of speech, AC had gone on to be competent in numerous languages. This calls into question the ubiquitous assumption that enhanced processing of perceptual aspects of speech in autistics can only be detrimental to what are regarded as much more important language abilities.

4. Unsung autism epidemiology: Williams et al. (2008)

Autism epidemiology tends to get a lot of media coverage, but this UK study, whose methodology resembles the much-publicized 2007 CDC epi studies, somehow got overlooked. Within "a large representative population sample" the authors found a prevalence of autism ranging from 51.5/10,000 (using more stringent standards) to 61.9/10,000 (using more relaxed standards). That's 1 in 194 to 1 in 162, strikingly lower than the 1 in 86 reported in a famous 2006 UK study involving a slightly older cohort. Within this sample, less than 15% were assessed to be in the range of intellectual disability, with this proportion falling to 13% for those with the specific diagnosis of autism (a higher rate, 27%, was found in those diagnosed with "atypical autism"). Also, having an autistic child was not associated with paternal age (a hot subject these days), and was only slightly associated with maternal age. Clearly, these are not the kinds of findings that attract the media, or autism advocates who produce press releases.

5. Rational autistics, irrational researchers: De Martino et al. (2008)

This paper gets both honourable and dishonourable mention. The study itself was a great idea, well-executed with important and fascinating findings. Autistics were shown to perform with enhanced logical consistency, avoiding irrational and irrelevant biases that distorted decision-making in their nonautistic controls. However, autistics' enhanced performance in this study was interpreted by the authors as a litany of autistic failures, imbalances, impairments, deficits, reduced capacities, weaknesses, and impoverishments (several invocations of some of these), none of which were actually found. The authors concluded that they have discovered a "core neurobiological deficit" in autistics. In years to come, we can look forward to interventions designed to overcome this core autistic deficit and to ensure that autistics become as irrational as nonautistics.

References:

De Martino, B., Harrison, N.A., Knafo, S., Bird, G., & Dolan, R.J. (2008). Explaining enhanced logical consistency during decision making in autism. Journal of Neuroscience, 28, 10746-10750.

Gernsbacher, M.A., Sauer, E.A., Geye, H.M., Schweigert, E.K., & Goldsmith, H.H. (2008). Infant and toddler oral- and manual-motor skills predict later speech fluency in autism. Journal of Child Psychology and Psychiatry, 49, 43-50.

Heaton, P., Davis, R.E., & Happé, F.G. (2008). Research note: Exceptional absolute pitch perception for spoken words in an able adult with autism. Neuropsychologia, 46, 2095-2098.

Tyrer, P., Oliver-Africano, P.C., Ahmed, Z., Bouras, N., Cooray, S., Deb, S., Murphy, D., Hare, M., Meade, M,, Reece, B., Kramo, K., Bhaumik, S., Harley, D., Regan, A., Thomas, D., Rao, B., North, B., Eliahoo, J., Karatela, S., Soni, A., & Crawford, M. (2008). Risperidone, haloperidol, and placebo in the treatment of aggressive challenging behaviour in patients with intellectual disability: A randomised controlled trial. Lancet, 371, 57-63.

Williams, E., Thomas, K., Sidebotham, H., & Emond, A. (2008). Prevalence and characteristics of autistic spectrum disorders in the ALSPAC cohort. Developmental Medicine and Child Neurology, 50, 672-677.

Verbatim: Three conclusions about autism interventions

2008-12-20T14:54:00.002-05:00

Five papers published or epublished so far in 2008, along with a sixth which has sat in press all year, have in one way or another reviewed the ABA group designs, sometimes alongside other approaches to autism.

The solitary RCT (where the intended comparison between randomized groups was actually carried out) in the 47-year history of ABA-based autism interventions--a small, largely failed study--is now drowned in an enormous murk of systematic, quasi-systematic, and not-systematic-at-all reviews. At this point in autism and autism advocacy history, no one should be surprised that this phenomenon encompasses dueling meta-analyses.

As with every other Verbatim, providing quotes doesn't mean I agree with them or the papers they are situated in. Here are quotes from the conclusions of three of the 2008 reviews:

Intervention studies suffer from methodological problems that preclude definitive conclusions regarding their efficacy. [...] While this review suggests that Lovaas may improve some core symptoms of ASD compared to special education, these findings are based on pooling outcomes from a few, methodologically weak studies with few participants and relatively short-term follow-up. [...] Future studies on the effectiveness of these interventions need to be more rigorous. (Ospina et al., 2008)

Given the few RCT studies, the few models that have been tested, and the large differences in interventions that are being published, it is clear that the field is still very early in the process of determining what kinds of interventions are most efficacious in early autism, the variables that mediate and moderate treatment effects, and the degree of both short-term and long-term improvement that can be expected for an individual child. (Rogers & Vismara, 2008)

Currently there is inadequate evidence that ABI [applied behavioral intervention] has better outcomes than standard care for children with autism. Appropriately powered clinical trials with broader outcomes are required. (Spreckley & Boyd, in press)

References:

Ospina, M.B., Krebs Seida, J., Clark, B., Karkhaneh, M., Hartling, L., Tjosvold, L., Vandermeer, B., & Smith, V. (2008). Behavioural and developmental interventions for autism spectrum disorder: a clinical systematic review. PLoS ONE, 3:e3755.

Rogers, S.J., & Vismara, L.A. (2008). Evidence-based comprehensive treatments for early autism. Journal of Clinical Child and Adolescent Psychology, 37, 8-38.

Spreckley, M., & Boyd, R. (in press). Efficacy of applied behavioral intervention in preschool children with autism for improving cognitive, language, and adaptive behavior: A systematic review and meta-analysis. Journal of Pediatrics.

When did the autism crisis start?

2008-12-11T08:24:00.004-05:00

According to my dictionary (The New Penguin English Dictionary, 2000), a crisis is "a time of acute difficulty or danger, esp on a national or international scale."

The autism crisis was created by autism advocates. Thanks to autism advocacy, the existence of autistics is now widely regarded and treated as a devastating epidemic--as posing a great and immediate threat to families, communities, the economy, and society as we know it.

Crisis creation has been one of autism advocacy's greatest achievements. Public policy is based on this crisis model of autism, in which virtually all autistics are young children who must be saved from the abyss of autism right now in order to save the future of society itself. Because the heroic effort to save autistic children from autism has been and continues to be costly (in many ways), public policy also now often encompasses the ideal that autism should be prevented.

In this autism-advocacy-created autism crisis, older autistics exist only in the future, as a looming danger to the public good. Unless there is funding for unlimited ABA, autism advocates threaten that an unprecedented epidemic of autistic children will grow up autistic--which means doomed (in fact, rotten), and large, violent and destructive, and institutionalized and horribly expensive. The fact that older autistics, the vast majority of whom have not been in ABA programs starting early in life, have not already destroyed the economy is just proof that we don't actually exist.

So one question is, when did autism advocates start this autism crisis? Or in other words, how long has this autism crisis been going on? I'd like to know. In a quick look-round, the earliest declaration of an autism crisis I found comes from Cure Autism Now. CAN claimed there was an autism crisis starting in 2000, or more than eight years ago:

"Today, autism is a national crisis affecting over 400,000 families and costing the nation over 13 billion dollars a year. According to recent studies, as many as 2 in every 1000 children born today will be on the autistic spectrum."

In 2002, Lee Grossman, President and CEO of Autism Society of America, declared that "autism is an emergency, and it is a national health crisis."

In the UK, the Guardian declared an autism crisis in 2002, and described autistic children as a "timebomb building in UK schools."

A "Canadian autism crisis" was declared by Autism Society Canada in 2001, or more than seven years ago. ASC has not at any time declared an end to this autism crisis. Indeed, in 2005 and 2006 this autism crisis was "growing" and currently, according to an ASC advisor (who cites a TV program, "The View," as his source), autism is definitely still a crisis.

CAN's successor, Autism Speaks, currently disseminates the claim that autism is "a national public health crisis" on every Autism Speaks press release (this one is about new Autism Speaks board members, none of whom is identified as autistic: autistics, autistics everywhere, and not a single autistic on the board, or anywhere else in Autism Speaks' leadership).

So apart from asking when this autism-advocacy-created autism crisis started, seeing as it has continued for more than eight years, another question is, when will it end? Or will it end? After all, creating and perpetuating an autism crisis is a piece of cake. Autism advocates have successfully placed themselves above scrutiny and criticism, such that none of their false claims, no matter how contradictory or outlandish or extreme, never mind harmful to autistics, is ever questioned.

Testifying in the senate some time ago, I pointed out the obvious: autism advocates have been very successful in their perpetual autism crisis creation. So it is difficult to imagine any amount of resources and recognition that would satisfy autism advocates and their demand for a world as free of autism--of autistic people--as possible. It is unlikely that Canada or any other country has enough resources to meet the urgent and constant demands of autism advocates.

My wild guess is that so long as there are autism advocates, and so long as they dominate public policy and the public discourse about autism, there will continue to be an autism crisis. And this crisis--which is really an autism advocacy crisis--will continue to stand in the way of autistics having good outcomes.

Addendum: Many thanks to a reader who passed along some evidence that the autism crisis was first declared in 1999. See this, this, and this.

[Conflict of interest declaration: I'm affiliated with a research group which receives funding from Autism Speaks, among other funding sources.]

Autism advocacy standards, ABA, and challenging behaviours

2008-12-01T05:47:00.005-05:00

Murphy et al. (in press) is a recently epublished paper about so-called challenging behaviours in autistic children.

In this study, 106 autistic children (mean age 8.5yrs, range 3-14.2yrs) were receiving intensive (27-35hrs/wk) one-on-one ABA-based interventions (the ABA school group), while 51 children received "eclectic" non-ABA autism-specialized services (27-30hrs/wk; the ASD unit children).

Some of these children (109) were judged to be in various ranges of intellectual ability, but this information was gathered by questioning individuals who worked with the children and was not verified in any way. Similarly, there is no information about these children's diagnoses, beyond that they were "children with autism spectrum disorder," and for seven children, even their age was unknown.

All 157 autistic children's challenging behaviours were assessed through a version of the Behavior Problems Inventory (Rojahn et al., 2001; Murphy et al., in press, take their description of this instrument nearly verbatim from this earlier paper). This instrument involves interviewing informants (rather than direct observation) and divides challenging behaviours into three categories: stereotypy, self-injury, and aggression.

Regardless of the reasonable sample size, this study's authors chose to organize their data in ways that made many statistical comparisons useless. There is a clear trend, though, if you slog through what information they do provide. This is summarized in the discussion, about comparisons between children in the ABA school group and children in the non-ABA ASD unit group:

With regard to the type of intervention received being a risk factor, findings show that the type of intervention is not related to the prevalence of challenging behavior. However, in relation to participants receiving an ABA intervention, they displayed a higher frequency of stereotypy and also showed higher levels of aggression.

If I adhered to autism advocacy standards, I could simply repeat some or all of this excerpt endlessly as some kind of "proof" of what intensive ABA programs accomplish.

But the first sentence in the quote above is not supported by the authors' analyses. The other sentence is accurate in the sense that what is claimed can be traced to statistical comparisons that were actually carried out.

However, these statistical comparisons are within the context of a very poor quality study where the findings, even within the given highly questionable parameters (e.g., definitions of challenging behaviours that, among many other limitations, encompass presumed mental states) are virtually impossible to interpret.

Available data that might assist in interpreting the findings are simply not reported (e.g., demographics of the two different intervention groups). But even were the data better reported, this study is based on an very poorly characterized sample (poor characterization being the standard in the vast ABA literature), and one that according to what scant information is provided, is not representative of autistic children in general.

Indeed, an inventory of the errors (some of them instantly obvious) and major weaknesses in this paper would be lengthy and would include, somewhere down the list, the authors' contention that ABA must have been effective in their study in reducing challenging behaviours in autism because, well, ABA is effective.

This paper was accepted (within two days of being submitted) by an autism journal edited by a famous behaviour analyst. In my view, in its epublished form, this paper contributes nothing reliable or worthwhile to autism research.

What is worthwhile, though, is the reminder that quality and standards matter. The selective reading and promotion of research of overwhelmingly poor quality is central to autism advocacy--is one of its signatures. Autism advocates have successfully insisted that poor quality research is what autistics deserve.

But poor quality research can be selectively invoked to support any position, as I've pointed out here. For example, the low/no standards of science and ethics that autism advocates have imposed on autistics have led to public funding for RDI. But pushing poor standards and poor quality research is not going to lead to better outcomes for autistics. Claiming otherwise, as autism advocates loudly do, harms autistics.

References:

Murphy, O., Healy, O, & Leader, G. (in press). Risk factors for challenging behaviors among 157 children with autism spectrum disorder in Ireland. Research in Autism Spectrum Disorders.

Rojahn, J., Matson, J.L., Lott, D., Esbensen, A.J., & Smalls, Y. (2001). The Behavior Problems Inventory: An instrument for the assessment of self-injury, stereotyped behavior, and aggression/destruction in individuals with developmental disabilities. Journal of Autism and Developmental Disorders, 31, 577-588.

Even more Autism Speaks epidemiology

2008-11-27T17:20:00.002-05:00

In a May 2005 press release, Autism Speaks announced that there are "nearly 2 million people in the United States living with autism." More than three and a half years later, Autism Speaks claims that "1.5 million Americans may be affected with autism."

You would think that given their goals, Autism Speaks would be celebrating the reported--by Autism Speaks--disappearance of ~500,000 autistics in less than four years. But remarkably, this reported dramatic decline in number of autistics is instead considered by Autism Speaks to represent "a national public health crisis" and a "global epidemic of autism." What's more, Autism Speaks currently reports that

"the rate of autism is rising 10-17 percent annually. Unfortunately, the numbers appear to be continuing their upward climb."
Autism Speaks' epidemiology is characterized by two overlapping themes. One is an absurdly dishonest and contradictory reporting of the easily-available evidence. The other is a pervasive disrespect for autistics, whose lives Autism Speaks expediently and anti-scientifically denies.

In a previous post, I quoted a sentence that graces every Autism Speaks press release. Here it is again:

The prevalence of autism has increased tenfold in the last decade.
In this one widely-distributed sentence, Autism Speaks grossly misrepresents the scientific literature; rejects the scientifically sound position that there has been a high, stable rate of autism; and wipes out the lives of 90% of autistics who existed more than 10 years ago.

But this is still not sufficient for Autism Speaks' political purposes. Here are some more Autism Speaks statements about the prevalence of autism:

February, 2006: "a decade ago... 1 in 10,000"

March, 2006: "1 in 10,000 just 13 years ago."

April 6, 2006: "Thirteen years ago only 1 in 10,000"

March, 2007:"1 in 10,000 -- it was 13 years ago"

April, 2007: "Fourteen years ago only 1 in 10,000"

May, 2007: "it was 1 in 10,000 just 13 years ago"

May, 2007: "13 years ago, 1 in 10,000"

November, 2007: "1 in 10,000 just fourteen years ago"
In these statements, Autism Speaks is--at least--also erasing the lives of more than 98% of autistics who existed more than 14 years ago.

While any calculation is of necessity very approximate, if the epidemiology Autism Speaks widely disseminates is taken seriously, then public policy decisions would be based on there being not many more than 300,000 autistics in the US, of whom the vast majority (~270,000) would be young children. A very small number (~14,000) would be older children, and there would be very few (~22,000) autistic adolescents and adults.

And of course this is in total contradiction with Autism Speaks' claim that "1.5 million Americans may be affected with autism." Meanwhile, a science-based estimate would be 2 million autistics in the US, of whom about 500,000 are children (the number of autistic children, ages 0-21, in the US is estimated by the CDC to be 560,000).

In the 2007 UN resolution about World Autism Awareness Day, a resolution heavily influenced by Autism Speaks, virtually all autistics are presumed to be children (see also this message). There is no mention of autistic adults, just the "high rate of autism in children," and that autism is a disability "mostly affecting children."

Autism Speaks' autism advocacy message is getting around the world: autistics don't deserve the protection and benefit of even minimal standards of science, ethics, and advocacy; and older autistics do not exist and need not be considered.

[Conflict of interest declaration: I'm affiliated with a research group which receives funding from Autism Speaks, among other funding sources.]

Verbatim: Autism advocacy rules

2008-11-17T11:32:00.002-05:00

This Verbatim is from a 2003 JAMA editorial by Eric Fombonne, in which he is writing about "claims about an epidemic of autism and its putative causes." More generally, this quote highlights the pervasive success of autism advocacy in imposing the lowest possible standards of science and ethics on autistics:

Yet, ironically, what has triggered substantial social policy changes appears to have little connection with the state of the science. Whether this will continue to be the case in the future remains to be seen, but further consideration should be given to how and why the least evidence-based claims have achieved such impressive changes in funding policy.

Reference:

Fombonne, E. (2003). The prevalence of autism. JAMA, 289, 87-89.

ABA success stories

2008-11-07T08:30:00.004-05:00

Gender disturbed children desperately need treatment.

This quote is from Rekers, Bentler, Rosen & Lovaas (1977). It concludes one of multiple peer-reviewed articles authored by prominent researchers, defending a highly successful early intensive ABA-based treatment (see also Rekers, 1977; Rosen, Rekers & Bentler, 1978; Rekers, Rosen, Lovaas & Bentler, 1978). This treatment was part of the UCLA Feminine Boy Project, which for some time ran concurrently with the UCLA Young Autism Project. Its unprecendented success in treating what was considered to be an intractable pathology was reported by NIH-funded UCLA researchers in peer-reviewed journals (Rekers & Lovaas, 1974; Rekers, Lovaas & Low, 1974). One of the stated purposes of this treatment was to "cure" or "prevent" homosexuality.

The UCLA researchers repeatedly wrote that the young boys targeted by their early intensive ABA-based treatment suffered terribly and were in pain. At all possible levels (physical, emotional, economic, social, etc.), their prognosis was described as "extremely poor" with a high risk of criminal, anti-social and self-destructive behaviour. Their future was one of "numerous crippling difficulties" and "pain, misery and despair" (all quotes from Rekers et al., 1977).

Then there were the parents of these reportedly severely disordered children, parents whose needs, values and goals were considered paramount. Therefore, according to the UCLA researchers, there was a "moral and ethical obligation" to intervene and provide a treatment which had been demonstrated to be effective. The fundamental purpose of this behavior analytic treatment was, they wrote,

to help children whose present and future is so filled with hardship that it would be clearly unethical not to render them professional help. (Rekers et al., 1977)

One of the desperate children who was successfully treated, starting at age 4 (his treatment is described in Rekers & Lovaas, 1974), and who therefore became "indistinguishable" from boys judged to be normal and healthy, was interviewed at length when he was 17 and 18. Here are some excerpts from these interviews (in which he is called "Kyle"), conducted by Richard Green ("RG") and published in Dr Green's book (Green, 1987): RG: The kind of feeling you had tonight with this guy who was looking at you and made you feel uncomfortable--what other times has that happened to you?

Kyle: I suppose I've been overly sensitive when guys look at me or something ever since I can remember, you know, after my mom told me why I have to go to UCLA because they were afraid I would turn into a homosexual.
.....

RG: I'm sure you're aware that there's a lot of social controversy about homosexuality and whether homosexuals should be allowed to be schoolteachers, should hold public office, have equal opportunity for jobs, housing, the whole civil rights question. How to you feel about that issue?

Kyle: I don't think they should because--well, I believe in God and everything and I think it's a pretty bad thing, and I think that they should try to be helped by whatever, but I think it is pretty bad, and I don't think they should be around to influence children, 'cause children are pretty easy to influence, little kids.

RG: Are you saying that homosexuality is sinful?

Kyle: I suppose it is. I don't think they should be hurt by society or anything like--especially in New York. You have them that are into leather and stuff like that. I mean, I think that is really sick, and I think maybe they should be put away.

.....

RG: When did you first have a crush on another male?

Kyle: Probably when I was in seventh grade.

RG: What do you remember about the first crush?

Kyle: I didn't like what was happening.

RG: Did it scare you?

Kyle: It did.

RG: Did it surprise you?

Kyle: Not really.

RG: Why not?

Kyle: Because I had been through all the UCLA stuff and all that. So I knew.

RG: Why should the UCLA stuff--?

Kyle: Well, because that was the reason for me to go, so I wouldn't be gay.

.....

(about his first homosexual encounter at age 18)

Kyle: It wasn't like I was real. And afterwards, a few weeks later, I tried to kill myself.

RG: Tell me about that.

Kyle: I swallowed about fifty aspirins.

RG: Did you really want to die?

Kyle: I think I really wanted to, but I knew I wasn't going to. But I really did want to.

RG: Why?

Kyle: Because I don't want to grow up to be gay.

RG: How strong an influence on your thinking is religious feeling?

Kyle: Not really strong, I don't think. It's pretty strong, but it's more me. I don't want to be that way. But religion is pretty strong too. Because I know it's wrong.

RG: Do you feel it's sinful?

Kyle: Yes.

RG: I'm not sure if I understand whether it's the idea of being gay or the idea that gay people don't live happy lives that's even more--

Kyle: I think it's both.

RG: It's both.

Kyle: Even if I was gay, I might feel happy and everything, but I know, I would know that it is wrong. I know it would be.

Kyle also states that he would have become a "total basket case" if he had not undergone treatment at UCLA. Asked what he would do if one day he was a father and had four year old boy with feminine behaviours, Kyle stated that he would take this child to a place like UCLA for treatment.

In the same book, Kyle's mother was interviewed and expressed how thankful she was for the early intensive ABA-based treatment which changed her son's behaviour.

The other young boy, Carl, whose successful ABA-based treatment was reported in the literature, also commented favourably (at age 12) on the treatment he received and its results. From Rekers, Lovaas, and Low (1974):

After our behavioral treatment, the two independent psychologists could find no evidence of feminine behavior or identification in Carl's test responses or interview behavior. Not only have family and friends remarked on the change in Carl, but he himself volunteered that he "used to be a queer, but not anymore." The treatment has clearly changed Carl's overt gender-related behaviors, suggesting that his sex-role development may have become normalized.
This was in an era where "queer" was an unambiguously pejorative word. Carl's parents were also reported to be satisfied; his mother was "pleased."

So by all reports, this early intensive ABA-based treatment was a great success for everyone involved. Everyone was reported to be happy about it--the parents who wanted treatment for their children, the boys who underwent treatment, and the behaviour analysts who provided the treatment.

And here again are the original UCLA researchers and their powerful defence of their successful ABA-based treatment:

For example, it has been suggested that the only appropriate goal of the psychotherapist dealing with a homosexual individual is to help him adjust to his homosexual orientation and behavior. Some critics go so far as to suggest that a referral to a "Gay Counseling Center" is even more appropriate, with the goal of placing the individual in contact with others like himself. We find this line of argument to be totally unacceptable and irresponsible. (Rekers et al., 1977)

And:

The non-neutrality of "gay counseling" imposes further limitations on the individual's growth potential, and unnecessarily sanctions a debilitating pattern of personal adjustment. (Rekers et al., 1977)

That is, any action in any direction suggesting acceptance of homosexuality was deemed harmful and unethical.

The world would be quite different now, would be comprehensively narrowed and impoverished, if an equivalent to current-day autism advocacy had prevailed, if this reportedly successful ABA-based treatment had not been derailed by serious criticism, including from the legendary behaviour analyst Donald M. Baer (Nordyke et al., 1977). In some of the most important, and most forgotten, writing in the behaviour analytic literature, Dr Baer and his colleagues made this statement:

The final reason for treatment was that the boy's parents were concerned. If a therapist takes only this point into consideration, then the therapist has become the parents' agent, rather than the child's, or society's. Can the therapist justify that short-sighted a role? What are the consequences for the field, and for society, if that were to become common practice? It is difficult for a therapist to be fully aware of all the issues involved when changing behaviors defined not by the person whose behavior is in question, but by other agents, such as parents or courts. This is especially true when treatment is not done by request of the person being treated. In such situations, it may be important and prudent for the therapist to seek out other people who may be more aware of the various issues involved. [...] [I]f therapists are to gain confidence in the ethics of their treatment, they should guard against treatment that unsophisticatedly threatens diversity in society. (from Nordyke et al., 1977)

[For more information about the UCLA Feminine Boy Project, see this article about ABA-based autism interventions. Ivar Lovaas' work with feminine boys was also mentioned in my Auton written argument.]

References:

Green, R. (1987). The "Sissy Boy Syndrome" and the development of homosexuality. New Haven: Yale University Press.

Nordyke, N.S., Baer, D.M., Etzel, B.C., & LeBlanc, J.M. (1977). Implications of the stereotyping and modification of sex role. Journal of Applied Behavior Analysis, 10, 553-57.

Rekers, G.A. (1977). Atypical gender development and psychosocial adjustment. Journal of Applied Behavior Analysis, 10, 559-71.

Rekers, G.A., Bentler, P.M., Rosen, A.C., & Lovaas, O.I. (1977). Child gender disturbances: A clinical rationale for intervention. Psychotherapy: Theory, Research and Practice, 14, 2-11.

Rekers, G.A., & Lovaas, O.I. (1974). Behavioral treatment of deviant sex-role behaviors in a male child. Journal of Applied Behavior Analysis, 7, 173-90.

Rekers, G.A., Lovaas, O.I., & Low, B. (1974). The behavioral treatment of a "transsexual" preadolescent boy. Journal of Abnormal Child Psychology, 2, 99-116.

Rekers, G.A., Rosen, A.C., Lovaas, O.I., & Bentler, P.M. (1978). Sex-role stereotypy and professional intervention for childhood gender disturbance. Professional Psychology, 9, 127-136.

Rosen, A.C., Rekers, G.A., & Bentler, P.M. (1978). Ethical issues in the treatment of children. Journal of Social Issues, 34, 122-36.

More Autism Speaks epidemiology

2008-11-04T04:45:00.005-05:00

Since last I wrote about Autism Speaks' epidemiology, two changes have been made on Autism Speaks' website. See here and here, compare to original versions here. No other changes were made, and Autism Speaks has recently elaborated on their epidemiology in press releases and the media. So it's possible to sum up Autism Speaks' epidemiology:

1. current prevalence of autism in the US is 1 in 150;

2. 10 years ago, prevalence was 1 in 1500 (as stated on all of Autism Speaks' press releases);

3. the "rate of autism is rising 10-17 percent annually. Unfortunately, the numbers appear to be continuing their upward climb";

4. there is an "epidemic" of autism, and this is a "recent epidemic";

5. because the autism epidemic is recent, older autistics do not exist; and

6. there are 1.5 million autistic people, total, in the US.

Given this array of information, the question remains as to how Autism Speaks calculated their 1.5 million figure. This figure is inconsistent with existing data. Autism Speaks' Chief Science Officer, Geraldine Dawson, was kind enough to provide more information:

1. Autism Speaks is using the 2000 census figure of ~280 million for current total US population;

2. Autism Speaks is using not the 1 in 150 prevalence figure Autism Speaks widely promotes, but a prevalence of 1 in 166;

3. the source for the 1 in 166 figure is Bertrand et al. (2001);

4. applying a prevalence of 1 in 166 across the total US population of 280 million yields 1.68 million autistics (it is actually 1.69 million);

5. this figure is rounded down to the nearest half million, to the Autism Speaks 1.5 million.

I can spot some problems. Autism Speaks states that the prevalence reported in Bertrand et al. (2001) is 1 in 166. But even a cursory reading of this paper's abstract shows that this is false. Here's a quote:

"The prevalence of all autism spectrum disorders combined was 6.7 cases per 1000 children."

Prevalence of 6.7 per 1000 comes out to 1 in 149--or about 1 in 150, the prevalence figure Autism Speaks widely promotes. Applying a prevalence of 1 in 150 across the 2000 US census figure of 280 million equals 1.87 million autistics. Following Autism Speaks' apparent policy of rounding to the nearest half million, that would be 2 million autistics in the US.

Then where does the 1 in 166 prevalence figure came from? The source Autism Speaks provided, Bertrand et al. (2001), does not report this figure. Autism Speaks' epidemiological expert, Michael Rosanoff, helpfully informed me that Autism Speaks was using figures from the US only, in calculating the Autism Speaks 1.5 million.

In fact the 1 in 166 figure first appeared in the literature in Chakrabarti and Fombonne (2001), as an estimate based on the results of three epidemiological studies. Two are UK studies (Baird et al., 2000; Chakrabarti & Fombonne, 2001); the other is the US study, Bertrand et al. (2001) which reported a prevalence of ~1 in 150. No published US epidemiological study reports a prevalence of 1 in 166.

Another problem is that Autism Speaks' Chief Science Officer is stating that there is a high, stable rate of autism. This is a scientifically sound position but, as enumerated above, one thoroughly rejected by Autism Speaks.

Instead, Autism Speaks widely disseminates the information that the prevalence of autism "has increased tenfold in the last decade." That is, 10 years ago, the prevalence of autism was 1 in 1500. If this is accurate, then the total number of autistics in the US would be less than 500,000. How much less would depend on what happened prior to 10 years ago, and how suddenly the leap from 1 in 1500 to 1 in 150 occurred.

At the same time, Autism Speaks is basing its epidemiology on three US studies. In Bertrand et al. (2001), the children were born between 1988 and 1995. Virtually all would be diagnosable as autistic by ten years ago, and the prevalence in this population was found to be ~1 in 150.

The more recently published CDC studies (ADDMN, 2007a, b) highlighted by Autism Speaks feature children born in 1992 and 1994. Again, virtually all would have been diagnosable as autistic by 10 years ago, and prevalence in this population was reported as ~1 in 150.

So Autism Speaks' array of information about autism prevalence is distant from what is reported in the scientific literature. Overall, Autism Speaks is claiming there are fewer autistics in the US than there actually are. How many fewer varies enormously, depending on which of Autism Speaks' contradictory figures is chosen.

And the upshot is primarily the denial of the lives and existence of older autistics. In an international "They Don't Exist" campaign, Autism Speaks is denying older autistics--around the world--recognition, rights, a voice, the kind of basic services nonautistics can take for granted, etc. This anti-scientific and unethical practice is a hallmark of autism advocacy. Autism Speaks is denying the existence of most autistic adults and of large numbers of autistic children.

In order to accomplish this amazing feat, this disappearing of autistics in the US and around the world, Autism Speaks is widely disseminating false, anti-scientific information about autistic people. This false information is deployed to raise money and to alter public policy according to Autism Speaks' goals. There is no thought as to the consequences for autistics. Autism Speaks is sending a powerful message that scientific findings--which Autism Speaks raises money to fund--should be dishonestly misrepresented and discarded, when these findings inconveniently get in the way of autism advocacy leaders such as themselves. And according to Autism Speaks, so should autistic lives be discarded, if they are in the way.

References:

Autism and Developmental Disabilities Monitoring Network Surveillance Year 2000 Principal Investigators; Centers for Disease Control and Prevention. (2007a). Prevalence of autism spectrum disorders--autism and developmental disabilities monitoring network, six sites, United States, 2000. MMWR Surveillance Summaries, 56, 1-11.

Autism and Developmental Disabilities Monitoring Network Surveillance Year 2002 Principal Investigators; Centers for Disease Control and Prevention. (2007b). Prevalence of autism spectrum disorders--autism and developmental disabilities monitoring network, 14 sites, United States, 2002. MMWR Surveillance summaries, 56, 12-28.

Baird, G., Charman, T., Baron-Cohen, S., Cox, A., Swettenham, J., Wheelwright, S., & Drew, A. (2000). A screening instrument for autism at 18 months of age: a 6-year follow-up study. Journal of the American Academy of Child and Adolescent Psychiatry, 39, 694-702.

Bertrand, J., Mars, A., Boyle, C., Bove, F., Yeargin-Allsopp, M., & Decoufle P. (2001). Prevalence of autism in a United States population: the Brick Township, New Jersey, investigation. Pediatrics, 108, 1155-61.

Chakrabarti, S., & Fombonne, E. (2001). Pervasive developmental disorders in preschool children. JAMA, 285, 3093-9.

[Conflict of interest declaration: I'm affiliated with a research group which receives funding from Autism Speaks, among other funding sources.]

Autism advocacy as public policy: an example

2008-10-13T20:06:00.015-05:00

Canadians are voting in a general election tomorrow. All major national political parties in Canada (Conservatives, Liberals, New Democratic Party, Green Party) are autism advocacy parties. That is, they are part of the widespread effort to make the world as free of autism--of autistic people--as possible.

Three of these parties have agreed that autistics contribute nothing to society as autistics, and that ideally our existence should be prevented.

The fourth party, the Green Party, has welcomed and adopted the views of their star candidate, the ex-Liberal MP Blair Wilson. Mr Wilson's public position is that the existence of autistics is a "blight on society," a blight against which Canada must take action. And Mr Wilson's view is that only autistics who undergo ABA-based interventions starting early in life have humanity. The rest of us--most autistics in Canada--don't. We have no humanity and aren't at all human.

Without exception, the positions of Canada's major national political parties entail writing off most autistics in Canada--those of us who haven't received unlimited ABA-based interventions starting early in life. The parties differ merely as to who exactly should pay for which aspects of the fight to achieve their collective ideal: a Canada free of autistic traits and abilities, and which has no autistic people at all.

In my search for someone I could vote for, I was given a closer look at one party's position. I was generously sent an internal Liberal policy document about autism.

This document includes information about the CIHR, about collaboration with autistic-free organizations whose goal is to prevent autism. But the Liberal's autism policy document is dominated by uncritical promotion of the premise that ABA-based interventions are the only effective "medically necessary" autism treatment, without which all autistics are expensive write-offs.

The sum total of the evidence provided by the Liberals to support this premise is Lovaas (1987). In this study, autistic preschool children in the experimental group were systematically hit--and hit "hard" according to two behaviour analysts involved in this study (Leaf & McEachin, 2008). This systematic hitting of very young children was, according to the design of Lovaas (1987) and its author, a crucial aspect of the experimental group treatment. A small-N study with major problems in reporting and methodology, Lovaas (1987) is not a true experimental design, and represents the standards of behaviour analysis circa 38 years ago.

It also apparently represents the standards of science and ethics that Liberals in Canada believe autistics deserve.

The Liberals go on to make this claim:

"Currently, statistics show that 90% of afflicted individuals are placed in institutions and residential facilities, placing increasing pressure on Canada’s education and social service programs."
This isn't the first time Liberals have denigrated developmentally disabled people by using what the Canadian Down Syndrome Society calls "inappropriate" and "offensive" language. To the Liberals, autistics are "afflicted individuals" and our proper place is in institutions. The 90% figure, an autism advocacy staple, exists nowhere in the history of autism research (for a review, see Howlin, 2005), much less in the present. Instead, this fictional figure reflects the extreme autism advocacy prejudice that autistics do not belong in society--surely, at least in part because we are presumed to be a threat to others--and instead must be locked away in institutions.

The Liberal Party, like the NDP and the Greens, have fully supported the autism advocacy organization FEAT (also known as "Medicare for Autism Now!"), which promotes the view that not only must most autistics in Canada be institutionalized, we must be kept in restraints and have our teeth pulled.

The Liberals elaborate the extent of the services required by all untreated autistics:

"With treatment, it is argued that the rate of institutionalization will be greatly diminished, and the current costs of over $300,000 per untreated autistic individual per year will be dramatically reduced."

The only approach to autism promoted in this document is Lovaas-type ABA as medical treatment, which must start early in life. This leaves the majority of autistics in Canada as "untreated" more-than-$300,000-per-year drains on society.

From recently reported figures, in Ontario, it costs between $20,000 and $78,000 per year (average is $49,000) for a developmentally disabled person to stay in a group home, and ~$100,000 per year to keep a developmentally disabled person institutionalized. Even a private sector institution, the Judge Rotenberg Center in the US, with its high level of restrictive supervision and its notoriously intrusive intervention program (including the use of strong aversives), is reported to charge ~$220,000 per year per inmate, many of whom are adults, many of whom are autistics.

So according to the Liberal Party of Canada, most autistics in Canada contribute nothing at all to society, in our entire lives. But beyond this, we just naturally have to be very expensively locked away into very secure--given the enormous cost--institutions (of any size) where we are constantly supervised and kept under control, apparently--given the enormous cost--by numerous round-the-clock staff. For our whole lives.

Using the currently-popularized autism prevalence figure of 1 in 150, there are ~150,000 autistic adults in Canada, and ~50,000 autistic children. Virtually all autistic adults in Canada are "untreated" (we did not receive Lovaas-type ABA starting early in life) and therefore we must, according to the Liberals, each be costing society at least $300,000 per year. That adds up to ~$45 billion per year. This is about the total amount the federal government transfered to the provinces in the 2008 federal budget. And that's just to pay for us untreated autistic adults. This doesn't include the costs of younger autistics who might also for various reasons be untreated by Lovaas-type ABA.

These extraordinary costs would be paid by the provinces. In Ontario, there are ~60,000 autistic adults. According to the Liberals, the Ontario government would be paying more than $18 billion per year, just for the costs of autistic adults. This would be about one-fifth of Ontario's total program spending.

The Liberals, however, rush in with their solution to the terrifying and appalling situation they have invented:

"It is important to note that on the flip-side, the cost of a science-based program for every child diagnosed at the age of 2 years is typically $60,000 per year, for the first three years. Some children no longer require treatment after this treatment period; some of the children may require treatment for a few more years, and then there is a minority of children who may need some level of treatment for their entire childhood, not unlike a child who may need long-term chemotherapy. However, these treatment costs typically decrease over time for the vast majority of children."

Again, by "science-based program," the Liberals are referring to Lovaas-type ABA as medical treatment. They contend that all autistic children do well in this treatment, and provided it continues if necessary until the end of childhood (where it apparently stops), Lovaas-type ABA is always successful in producing an autism-free individual.

There are no credible (in the peer-reviewed literature) sources for what the Liberals claim. Indeed, Lovaas (2003) makes the data-free claim that autistics who do not achieve "normal functioning" in ABA programs by age 7 (and the majority of autistics don't) will remain totally dependent on ABA programs for the rest of their lives.

There is no peer-reviewed paper that reports data about the adult outcomes of a controlled trial of Lovaas-type ABA (or any kind of ABA). The only follow-up into school ages follows-up the aversive-based treatment in Lovaas (1987; McEachin et al., 1993), and does not report that all autistic children in the experimental group eventually became free of autism and therefore had good outcomes. The only true experimental design (where the intended comparison between randomized groups was actually carried out) in the 47-year history of ABA-based autism intervention research, reported largely poor results in a small-N study, particularly for children with the specific diagnosis of autism (Smith, Groen & Wynn, 2000, 2001; don't forget to read the authors' errata). A recent uncontrolled trial, often falsely touted as a "replication" of Lovaas (1987), showed that the majority of children not only did not display improvement in their scores on any of the chosen outcome measures, they had significant losses in several measures (language, adapative abilities) over 4 years of intensive ABA (Sallows & Graupner, 2005). A recent community-based study showed that while preschool autistic children had widely varying individual short-term outcomes, their outcomes did not differ according to whether they did or did not receive Lovaas-type ABA (Magiati et al., 2007; see also Eaves & Ho, 2004, for similar results in a Canadian study). And so on.

With similar disregard for science and ethics, the Liberals claim that ABA-based autism interventions are just like chemotherapy. This is in concert with their false contention that ABA is a medical treatment, researched and provided by medical professionals according to medical standards. But this also demonstrates how the Liberal Party of Canada sees autism: as a cancer, that has to be gotten rid of, from individuals and society. In the Liberals' view, there is everything to be gained and nothing whatsoever to lose if public policy dictates that autism must be totally gotten rid of, just like cancer.

The Liberals go on to confirm how much money would be saved if autistic children all undergo Lovaas-type ABA as a medical treatment:

"By implementing ABA/IBI therapy into the category of insurable health services, provinces and territories will save approximately $240,000 per autistic individual per year, with a declining cost scale associated with successful treatment outcomes."

This Liberal Party autism policy document is so distant from accuracy, from recognized standards of science and ethics, that it's difficult to respond to (where do you start?). And indeed, I've been informed by Liberals, numerous times, that any criticism of the views of autism they widely disseminate is outrageous and unwelcome--how dare I. This is another hallmark of autism advocacy: any scrutiny or criticism of claims made about how autistics should be regarded and treated--any hint of standards of science and ethics--is seen as reprehensible, and is responded to by personal attacks. Autism advocacy as public policy is above science and ethics, above scrutiny and criticism.

My purpose isn't to single out the Liberals. I'm using their document as just one example of what autism advocacy is and what autism advocacy does. I suggest that if the other major political parties in Canada have produced internal autism documents or backgrounders, these too would be filled with policies and positions based on similar extreme falsehoods and stereotypes. These too would display abysmal standards of science and ethics. All of Canada's major political parties are autism advocacy parties displaying and promoting popular autism advocacy standards, values, methods and goals.

If you're not an autism advocate, if you want a place in Canadian society for autistics, if you support full equality and participation and recognized standards for autistics, if you believe autistics deserve better--there's no one to vote for.

References:

Eaves, L.C., & Ho, H.H. (2004). The very early identification of autism: outcome to age 4 1/2-5. Journal of Autism and Developmental Disorders, 34, 367-378.

Howlin, P. (2005). Outcomes in autism spectrum disorders. In F.R. Volkmar, R. Paul, A. Klin & D. Cohen (Eds), Handbook of Autism and Pervasive Developmental Disorders. Hoboken, NJ: Wiley.

Leaf, R. & McEachin, J. (2008). The UCLA Young Autism Project. In R. Leaf, J. McEachin & M. Taubman (Eds.), Sense and nonsense in the behavioral treatment of autism: It has to be said. New York: DRL.

Lovaas, O.I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9.

Lovaas, O.I . (2003) Teaching Individuals with Developmental Delays: Basic Intervention Techniques. Austin, TX: Pro-Ed.

Magiati, I., Charman, T., & Howlin, P. (2007). A two-year prospective follow-up study of community-based early intensive behavioural intervention and specialist nursery provision for children with autism spectrum disorders. Journal of Child Psychology and Psychiatry, 48, 803-812.

McEachin, J.J., Smith, T., & Lovaas, O.I. (1993). Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal on Mental Retardation, 97, 359-72.

Sallows, G.O., & Graupner, T.D. (2005). Intensive behavioral treatment for children with autism: Four year outcome and predictors. American Journal on Mental Retardation, 110, 417-438.

Smith, T., Groen, A.D., & Wynn, J.W. (2000, 2001). Randomized trial of intensive early intervention for children with pervasive developmental disorder. American Journal on Mental Retardation, 105, 269-85. Erratum in American Journal on Mental Retardation, 105, 508. Erratum in American Journal on Mental Retardation, 106, 208.

Another autistic victory

2008-10-03T10:54:00.002-05:00

"... the Tribunal finds that the complaint filed by Ms. Dawson against Canada Post is substantiated and that the Respondent has contravened sections 7 and 14 of the Act."

That's from paragraph 248 of a decision just released by the Canadian Human Rights Tribunal, in the first ever autism-related case referred to this Tribunal for a hearing.

You can find this decision here in html and here in pdf.

In some ways it's a very strange decision, with a stupefying number of just huge factual errors in it. Due to my own incompetence in representing myself (and in just generally functioning throughout the extensive hearings) and for other reasons, including the enormous factual errors made by the Tribunal, I lost some aspects of this case. But to my own astonishment, I won other aspects. Indeed the aspects I won are those most important to me, and also those which I was firmly discouraged from pursuing by the Canadian Human Rights Commission (which was a party to this case, representing the public interest).

Setting aside the astounding factual errors about the specifics of the case, as I believe they should be set aside, and setting aside my own personal situation, as I believe should also be set aside, this decision is entirely good for autistics in Canada. It is unprecedented in establishing under a human rights law in Canada that autistics--as autistic people, and regardless of what kinds of interventions we may or may not have received--are human beings with human rights.

Here is an excerpt:

[242] Be this as it may, the Tribunal finds it disturbing for the future of autistic people that they be seen because of their condition to pose a threat to the safety of others and some form of nuisance in the workplace. An employer has a duty to ensure not only that all employees work in a safe environment but also that ill perceptions about an employee's condition due to poor or inadequate information about his disability lead other employees to have negative and ill-founded perceptions about him.

[243] An autistic person should expect that his workplace be free of any misperception or misconception about his condition. It goes to the right of autistic individuals to be treated equally, with dignity and respect, free of any discrimination or harassment related to their condition. In this respect, in a society where human rights are paramount, an employer has the duty to dispel such misconception or misperception about such individuals.

[244] This duty stems from the Canadian Human Rights Act and the need to get rid of any discriminatory behavior in the workplace as well as in society in general. It is worth reminding employers as well as society as a whole that the purpose of the Canadian Human Rights Act, as stated in section 2 of the Act, is to give effect to the principle that all individuals should have an opportunity equal with other individuals to make for themselves the lives that they are able and wish to have and to have their needs accommodated, consistent with their duties and obligations as members of society, without being hindered in or prevented from doing so by discriminatory practices based on race, national or ethnic origin, colour, religion, age, sex, sexual orientation, marital status, family status, disability or conviction for an offence for which a pardon has been granted.

[245] Autistic people, if they want to be able to accomplish themselves in a workplace or in society, need to be reassured that everything possible short of undue hardship will be done in order to ensure that misperceptions and misconceptions about their condition are properly handled by their employer, so that co-workers have a proper understanding of their condition and are not inclined to discriminate against them or harass them.

[246] To discriminate on the basis of somebody's physical appearance or social behavior might be one of the cruelest forms of discrimination. Here, Ms. Dawson was seen or perceived, at one point in her career at Canada Post, to be a threat to her co-workers because she had self-injured in the past, not because she had assaulted colleagues. She was later on perceived as a form of nuisance because she insisted on obtaining rational responses to her queries and never backed down. The fact of the matter is that Ms. Dawson was, until her diagnosis became officially known to Canada Post in 1999, seen as an excellent employee.

[247] The Tribunal is of the opinion, in view of the evidence, that the Respondent needs to review its policies in relation to discrimination and harassment and put in place educational programs that will sensitize its employees as well as management to the needs of disabled individuals in the workplace, notably autistic individuals, so that individuals such as Ms. Dawson will not have to suffer from a lack of knowledge and understanding of their condition. In this respect, given the Canadian Human Rights Commission's expertise in these matters, the latter can surely provide assistance, which should be welcomed, to the Respondent.

What I was dreading most was the same thing I had dreaded in Auton at the Supreme Court of Canada: a decision that would harm autistics, would make our lives even more difficult, would further limit our possibilities, would make it less likely that we would ever be given the opportunity to demonstrate our ability to contribute to society as autistic people. But this Tribunal decision, for all its faults with respect to the facts of the specific case, is instead a step in the right direction. It's a step towards human rights for autistics in Canada, and towards all the possibilities human beings have, when we are regarded and treated as equals, and can proceed in society as fully human beings with human rights and dignity.

As one autistic person, I did the best I could (with many thanks to those who helped along the way). And I didn't win every aspect of this specific--and very difficult and exhausting--case. But for all autistic people, this Canadian Human Rights Tribunal decision is a one hundred percent victory.

[Note: for clarity, the title "Another autistic victory" alludes to a 2005 article I wrote called "An autistic victory," about the Auton Supreme Court of Canada decision.]

Remembering Marla Comm

2008-07-13T15:18:00.001-05:00

Jonathan Mitchell has posted that Marla Comm has died. He was informed of this by Susan Moreno of MAAP.

According to Mr Mitchell, Marla died of breast cancer. She was not much older than me.

Cancer is a truly horrible disease.

I can't remember which years it was that Marla would often phone me. This happened after Peter Zwack (who also died far too young of cancer) asked me if he could give my phone number to an autistic called Marla so she could phone me. I said sure. Eventually, Marla started phoning me.

The first thing about Marla is that she was brilliant. She had a math degree, from McGill I think. She knew all kinds of stuff (she once started talking about the keys in which klezmer music is played, e.g.). She shared my interest in the weather. She knew a lot about computers, but I couldn't speak with her about this due to my own total ignorance (I didn't have a computer at the time). I remember at some point, someone in her workplace gave her a computer.

Marla's determination was fantastic. She had been very determined in unearthing the records of her own past. She was very determined to have her story told in a book, and succeeded more than once.

In a city that's notoriously dangerous for cyclists, Marla routinely rode her bike from the west end of Montreal all the way to the Olympic stadium way over in the east, and back--amazing. She also rollerbladed. I'm sure I saw her once (we never met--I don't think she wanted to meet me--but I did see a photo of her in a media story), whizzing by through an intersection, with great verve, poised and confident and--happy. She loved biking and rollerblading. Also, she liked walking up big hills--something we had in common.

She hated winter, disliked French, had a poor opinion of francophone Quebecois, and wanted maybe more than anything (at least, during the time she phoned me) to live in an English city where there is no winter. She hated Montreal. But she was an active citizen; she often told me that another of her letters to the editor had been published in the Montreal Gazette. She would sometimes tell me, when she phoned me, that she couldn’t talk much because she had so much email, from friends and supporters, to read.

She didn't need too much in the way of services and assistance, but what she needed, she really needed. During the time she phoned me, she had not succeeded in getting the relatively minor services and assistance she needed and which would have made a major difference in her life. She had tried very hard, and had very bad experiences in trying.

The kind of help she needed, I couldn’t have provided (even if she had asked me, which she didn’t), and I had no more success than she did, in obtaining even minor assistance via autism societies, etc. I tried to share with her ways I dealt with my own limitations, but she was neither interested nor in the least impressed. After all, I was usually in more trouble than she was, throughout the time we spoke. I could hardly recommend anything, as she astutely noticed.

One thing she told me was that she never laughed. She had no sense of humour at all. But once when she phoned me, she launched into an anecdote about her family. I pointed out that it was very funny, and she laughed, right out loud. She had a great laugh. Some other times when she talked, she got very close to laughing too. But she did outright laugh that one time--she saw the absurdity in the story she had done a superb job of telling me, and it made her laugh.

Once when she phoned me, I told her I thought she was totally cool. This was true: I often disagreed with things she said, but I thought she was totally cool. This seemed to bother her, and she never phoned me again. She had never indicated in all the time she phoned me, that she would be okay if I phoned her, much less that she wanted me to phone her. So I did not try to phone her, and that was the last we spoke, many years ago.

Now and then I would hear news about her, and when I got online found her here and there as well, always wanting to get away from Montreal, the city she hated.

It's terrible that she died of cancer at such a young age. I hope she managed to rollerblade as long as she could. That's how I'll remember her, flying by on the street, free and happy in the summer.

(This was originally posted on the TMoB board shortly after I heard about Marla's death.)

Nine years

2008-06-19T17:06:00.000-05:00

I wrote about the life and death of Tiffany Pinckney here.

She was a young autistic woman who was neglected for years extending back into her childhood, by her sister and legal guardian Allison Cox. In the spring of 2005, Tiffany died of starvation in the place where she lived, deliberately locked into a filthy, windowless basement, with no access to a toilet, food or water. She was skin-and-bones when she died, a skeleton, and caked with dirt and feces, just like the room she was locked into. She suffered beyond what can be described in words, in the middle of a wealthy Mississauga neighbourhood, hidden underneath a fancy four-bedroom home.

She may have been dead in her basement prison for more than two days before her death was reported via a 9-11 call.

Today Allison Cox was sentenced to nine years in prison for deliberately neglecting and starving her sister Tiffany to death.

You can find information about Ms Cox's sentencing in today's Toronto Star. Here is an excerpt:

Justice Joseph Fragomeni described the circumstances of the case as among the worst he's ever experienced as a trial judge.

He said Pinckney endured a "slow, painful and lonely descent into death," and that the "graphic and disturbing photos" presented during the trial "spoke volumes" about the last days of her life.

He told Cox that society demanded that she serve a lengthy period of incarceration in a federal penitentiary for what he described as a "tragic, horrific and senseless" death of a "vulnerable" young person.

He said Pinckney was denied the "most basic" of human necessities. "She was denied food, water and medical attention," he said.

"How is it possible in a country of such wealth and abundance that a person could die from a lack of food and water?" Justice Fragomeni asked. "Tiffany didn't see a doctor for five years ... (Cox’s) breach of trust was egregious."

The question remains why Ms Cox was not charged with a more serious crime. In a November 1, 2007 story, the Toronto Star quoted John Raftery, the prosecutor, as arguing in court that:

"Not only is there enough evidence to convict her (Cox) of manslaughter but there is sufficient evidence for first-degree murder."

In 2002, a young boy called Jeffrey Baldwin died in Toronto of extreme neglect at the hands of his legal guardians. He was locked in a room, starved, "forced to sleep in his own excrement", and grossly mistreated, though unlike Tiffany, he had a toilet to drink from. Jeffrey was not autistic. His horrific death (his body was "covered with sores and abrasions" and at nearly age six weighed less than what a one year old should weigh) attracted sustained attention from the major media. No one attempted to blame his death on his own characteristics, his own needs or abilities, his own presumed level of functioning, his own behaviour, etc.

Jeffrey's guardians were originally charged with first degree murder, were convicted of second degree murder, and were required to serve 20 to 22 years in prison (close to the maximum for first degree murder) before being eligible for parole.

Nine years in prison (and two years of house arrest for Ms Cox's husband, Orlando Klass) does not seem much, against the life and death of Tiffany Pinckney, and how much she suffered for so long.

Before being deliberately neglected and starved took all her possibilities away, and when she was away from the horror of her home, Tiffany "loved music." She was "lots of fun" and "excited and happy." She was "great." I will always remember her, every day.

Verbatim: Levels of functioning in autism

2008-06-16T08:21:00.000-05:00

This very short entry in the verbatim series is from Lovaas (1996). The children Dr Lovaas refers to in this quote are autistic. Italics are in the original, which sits within one of the major autism ABA manuals:

Terms such as high-functioning versus low-functioning children are derogatory and should be avoided.

Reference:

Lovaas, O.I. (1996). The UCLA young autism model of service delivery. In C. Maurice, G. Green, & S. Luce (Eds.), Behavioral intervention for young children with autism: A manual for parents and professionals. (pp. 241-248). Austin TX: Pro-Ed.

The epidemiology of Autism Speaks

2008-06-13T04:33:00.001-05:00

Autism Speaks promotes 1.5 million as the number of autistics in the US, a figure Autism Speaks associates with a 1 in 150 prevalence of autism. For example, Autism Speaks' FAQ states that:

"As many as 1 in 150 children are autistic, according to the Centers for Disease Control. That adds up to almost 1.5 million people in the United States."

You can also find Autism Speaks informing the public that all those 1.5 million autistics are children. Here's a quote from a recent Autism Speaks press release, where Mark Roithmayr, Autism Speaks' President, is quoted as saying:

"Toys“R”Us has been a tremendous partner in helping us shine a national spotlight on this disorder, which affects 1.5 million children in the United States."

My question is, where does the Autism Speaks 1.5 million come from? Other autism advocacy organizations use this figure, but Autism Speaks is the current authority, the major private autism research funding body, a major influence on public spending, the biggest, most powerful autism advocacy organization of them all, representing and deciding the (ideally, according to Autism Speaks, very short) future of all autistic people.

If there are 1.5 million autistic children in the US, as Autism Speaks claims, and if the prevalence of autism is 1 in 150, as Autism Speaks also claims, then the total number of children in the US would have to be 225 million.

According to the US Census Bureau, the total US population is currently just above 300 million. According to the same source, the total number of children (age 0-19) in the US would be about 80 million. If Autism Speaks is still insisting, as it did in a May 2008 press release, that there are 1.5 million autistic children in the US, then Autism Speaks has discarded the 1 in 150 prevalence figure in favour of 1 in 53 (even higher than the UK Observer could manage in its big, bogus, retracted autism scare story).

On the other hand, if Autism Speaks is claiming that there are 1.5 million autistics in total in the US, including autistic adults, this produces an overall prevalance of about 1 in 200, dramatically lower than Autism Speaks' widely advertised 1 in 150.

Or Autism Speaks might be claiming that the prevalence of autism is 1 in 150 in children, and lower in adults. In order for the 1.5 million figure to work this way, the prevalence of autism in adults would have to be about 1 in 220. This is not a figure that I can find anywhere on the Autism Speaks website, never mind its rationale.

On the other hand, if Autism Speaks applies their advertised 1 in 150 prevalence figure to the entire US population (which cracked 300 million in 2006), then the result is a total of 2 million autistics in the US, of whom about 500,000 are children and 1.5 million are adults. But this would mean that there has been a high stable rate of autism. This is a scientifically sound position, but one that Autism Speaks and autism advocacy in general has rejected.

All of the figures above are easy enough to find and calculate--well within Autism Speaks' abilities. After all, Autism Speaks has numerous scientific advisors as well as a chief scientific officer. And a difference of 500,000 between the figure promoted by Autism Speaks and the figure consistent with the existing scientific literature is hardly trivial. What major, high-profile disability organization would so persistently deny the existence of hundreds of thousands of the disabled people it claims to represent? This can only result in disabled people being unable to obtain services, unable to be recognized for their contributions, unable to have a voice in their own future, etc.

But this is what autism advocates do. One of the near universals of autism advocacy is the promotion of the autism "epidemic," and the rejection of the scientific position that there's been a high stable rate of autism. The main effect of this has been the denial of the existence of older autistics. In Canada, this denial of autistic lives by autism advocates has been extreme.

Another universal of autism advocacy is a gross disregard for accuracy and ethics in reporting what is known about autism. Autism Speaks is telling the world--including governments--that when it comes to autism, you don't need to bother with the facts. You don't need to check your basic arithmetic, much less take the trouble to look up primary sources. Autism Speaks' widely disseminated 1.5 million figure, and its casual denial of half a million autistic lives, is just one example of the standards of science and ethics that leading autism advocates apply to autistics.

The life and death of Tiffany Pinckney

2008-02-10T21:22:00.000-05:00

Tiffany Pinckney died on April 2, 2005, in a filthy windowless basement under a fancy four-bedroom home in a well-off neighbourhood in Mississauga, Ontario. She was autistic. She died of starvation at the age of 23, having been neglected to death. She was skin and bones, when she died. She was found to have brain damage (Central Pontine Myelinolysis) consistent with malnutrition and deprivation of or inadequate provision of water.

I didn't hear about her until she had been dead for several months. At the end of July, 2005, after an extensive investigation, police laid charges against Tiffany's older sister Allison Cox and her husband Orlando Klass. Reports of these charges (failure to provide the necessities of life; criminal negligence causing death) were the first mentions of the death of Tiffany Pinckney in the media.

It was in Ms Cox and Mr Klass' basement that Tiffany died. It's possible that she died while Ms Cox, who had been Tiffany's legal guardian for seven years, attended a birthday party with her children.

In June, 2007, Mr Klass pleaded guilty to the charge of criminal negligence causing death. He did not go to jail. He was sentenced to two years of house arrest. Meanwhile, Ms Cox was additionally charged with manslaughter in Tiffany's death.

Here is a bit about the life and death of Tiffany Pinckney. The information comes from media reports about her death in 2005 (from the National Post and the Toronto Star, among others), and media reports in October and November, 2007, about the trial of Allison Cox (from the Toronto Star and the Missisauga News).

Tiffany Pinckney was born in the U.S. and lived there with her mother until the early 1990s, when they moved to Canada.

Tiffany was born with a heart defect, and was diagnosed as "mentally challenged" when she was four. She was diagnosed autistic when she was 10 (which would be circa 1992).

When Tiffany was 16, in 1998, her mother died of cancer. Ms Cox became Tiffany's legal guardian and principal caregiver.

The first reports I read about Tiffany's death (e.g., in the Toronto Star, July 27, 2005) suggested that she had been neglected for a long time--possibly more than seven years. This would be the entire time she was under the care of Ms Cox. Some of the reported testimony at Ms Cox's trial was consistent with this.

For example, a teacher at the school Tiffany attended until 2003 (when she would have been 21) testified about Tiffany's poor condition (weight loss, obvious lack of care, "she did not look well") going back to her teens. The same testimony suggested that at this school, Tiffany was loved. She "loved music." She was considered "lots of fun" and "great." She was "excited and happy" taking the bus to school but "upset" returning home to the care of Ms Cox (all from the Toronto Star, October 12, 2007).

There was also testimony from various sources that Ms Cox persistently refused offers of assistance and services in caring for Tiffany. Also, Tiffany was not taken to see a doctor in the last five years of her life.

But neither those who witnessed Tiffany's deterioration at school, nor those whose services were refused, did anything to ensure that Tiffany was getting at least the minimum of necessary care. One of Tiffany's teachers testified that if Tiffany had been 3 years old, she "would have called the Children's Aid Society" (also from the Toronto Star, October 12, 2007). But this teacher did not do anything and nor did anyone else.

In August of 2004, Tiffany was moved by Ms Cox to a four bedroom home, described in the National Post as being on a street "lined with two-storey homes and well-kept lawns."

Here, Tiffany was kept in an unfinished windowless basement room with bare walls. She slept on a deflated air mattress on plywood or pressboard. There was no toilet in the basement. There was no running water. No source of food. Neighbours reported being totally unware that Tiffany existed.

There was a lock, on the door down to the basement. And this door had been reinforced by the addition of weather stripping. So Tiffany was both locked and sealed into the basement.

Upstairs, there was a lock on the refrigerator.

She died of starvation over a long period of time, losing more than 100 pounds. When she died, she weighed 84 pounds and was described as "skeletal." There was expert testimony that adequate provision of food and water could have saved her life.

At her death, she was caked in dirt, urine and feces, as was the room she lived in, where the stench was reported as being appalling. She looked exactly how any person locked and sealed into a basement for many months and denied access to food, water, a toilet, the light of day, etc., might be expected to look.

It is hard to imagine how much Tiffany must have suffered.

On February 2, 2008, Ms Cox was convicted of manslaughter by Judge Joseph Fragomeni. She has been free on bail since her original arrest, and will remain free until she is sentenced in May, 2008.

While I have been writing about Tiffany Pinckney sporadically since 2005, it has taken me a long time to write this short and totally inadequate post about her life and death.

In trying to write this, I've often stopped and wondered if Tiffany had ever, in the months she was dying, sealed and locked in the basement, tried to escape. Maybe she had been neglected for too long, was too sick and weak. Maybe she had been, as many autistics are, successfully discouraged from any behaviours involved in escaping. Also I am thinking of her when she was younger and not yet dying, getting "upset" on the bus going home, after enjoying her day at school. It seems to me that she was communicating something important. Possibly, she communicated this important thing many, many times and when this made no difference (perhaps she was considered to be misbehaving) she stopped. I've often stopped and wondered whether she would be alive if someone, anyone, had listened.

Erin Anderssen does not take autism seriously

2007-11-03T12:02:00.000-05:00

The following is what I will probably send to Globe and Mail reporter Erin Anderssen, if I can get my email to work (yes, you can blame my computer for my long lapse in blogging)--about this Globe and Mail article.

Ms Anderssen,

With respect to "Autistics: We don't want a cure" from the Globe and Mail (November 3, 2007):

When I spoke with you, I stated directly that I should not be falsely described as an "activist." Once I understood what the word "activist" meant (this did take a while, which is typical for me), I knew I wasn't an activist--something I've known for some years now. Some people have called me an activist, but some people have also called me a fraud, and neither is accurate. At the time, you agreed that you would describe me only as a researcher. Yet in your article, you dishonestly chose to falsely describe me as an activist.

My correspondence with you also shows that I had not understood what kind of article you were planning to write. But once I realized you were writing an article about a cultural phenomenon (this was not what I had understood about your article; you had been referred to me by a scientist), I stated, in writing, that I should not be in this kind of article--which tends to add more irrationality to the already irrational public discourse about autism. But you put me in your cultural phenomenon article anyway.

And while I am in your article, the factual and verifiable information I gave you, which is typical of the information many autistics publicly provide, was overwhelmingly ignored. Instead, your article depends on caricatured and harmful stereotypes of autism and autistic people.

All my statements to you about neurodiversity (a subject far beyond the scope of autism, and about which I've written virtually nothing) included the information that neurodiversity is part of the general idea that disabled people should have human rights. I gave numerous examples from other disability areas, including blindness, Down syndrome and the general area of developmental disability.

I provided you with examples of legal cases where the demands of some parents of disabled children and the interests of disabled people were incompatible. Developmentally disabled people--who would be written off as "low-functioning" by autism advocates like Harold Doherty--have used the courts to oppose those trying to deny their human and legal rights. As I wrote to you, the work of groups like People First, which I admire enormously, exemplifies what neurodiversity means: that disabled people are fully human and should have human rights, regardless of how hard some groups and individuals work to write us off.

Instead of acknowledging this view, which is commonplace among autistics, you report only the false distinction, that autism is a difference but not a disability, as if disability is necessarily something wrong and inferior. This is the opposite of what I communicated to you, and the opposite of what neurodiversity represents.

But you were only getting started: then you go to town presenting extreme and offensive views--including that autistics are superior beings with "superpowers"-- held by some autistics. These unfounded and offensive views are, as much as possible, publicly criticized and opposed by many other autistics whenever they are expressed--an essential bit of balance that you totally failed to report.

You also failed to report what should be considered extreme views on the part of autism advocates, but which are in fact mainstream views supported by major autism organizations and political parties. For example, I provided you with FEAT's statement--in the Globe and Mail--that autistics who have not received unlimited ABA-based interventions starting early in life--that is, most autistics in Canada--must be institutionalized, abused (kept in restraints), and mutilated (our teeth pulled). FEAT is Canada's most powerful and influential autism advocacy group. Their extreme public statements have not resulted in any opposition or criticism from autism advocates, and have indeed been greeted with their applause. And FEAT has full support from two of Canada's major national political parties: the Liberals and NDP, whose only objection has been to any suggestion that FEAT's positions are extreme.

I also provided you with my one-sentence position: that autistics are fully human and should have human rights; and that autistics deserve the recognized standards of science and ethics that automatically protect and benefit nonautistics--such as yourself--and without which you could not proceed safely in society, much less have a good outcome.

This is the position that Mr Doherty so vehemently opposes.

I communicated to you the important question of why autism advocates--powerful and influential leaders like FEAT and Mr Doherty--have been unwilling or unable to make their demands for services--whatever those services may be--accurately (including with respect to the existing science), ethically, and respectfully.

I communicated to you the problem of autism advocacy leaders like FEAT and Mr Doherty writing off autistic people, denying autistics basic human rights, denying autistics recognized standards of science and ethics, and successfully demanding that laws that protect themselves should not protect us. The actions of Mr Doherty and others similar, as I wrote to you, make daily life difficult and dangerous for many autistic people--just as the denial of basic rights and standards, and of the protection of the law, would make daily life difficult and dangerous for anyone. Then Mr Doherty et al. point at our difficult and poor outcomes, declare us a crisis and drain on society, and demand that autistics be eradicated.

As I wrote in response to Mr Doherty's comments on my blog about self-injury and institutionalization, he would be the first to write me off if he saw me in difficulty. He would be the first to use me as an example of why autism is a horrific disease that must be eradicated.

Indeed, as I explained to you, I have experienced being written off via the values Mr Doherty and other powerful autism advocates embody--and impose on all autistics. No doubt I'll be written off this way again. I'm well placed to understand why autistics often suffer and have poor outcomes--and will continue to so long as Mr Doherty and others similar persist in dehumanizing us, in spreading false, anti-scientific information about us, in spreading the word that we're dangerous and violent and/or frauds and criminals, in denying us rights, standards, and the protection of the law--and in writing us off.

I provided a short summary of my views about neurodiversity when I first spoke with you. I don't know much about neurodiversity, but it's easy when there's organizations like the Canadian Down Syndrome Society, which disseminates information like this:

"Down syndrome is not a disease, disorder, defect or medical condition. It is inappropriate and offensive to refer to people with Down syndrome as "afflicted with" or "suffering from" it. Down syndrome itself does not require either treatment or prevention."

I also told you that in a major advertising campaign (including a large ad in the Globe and Mail), the CDSS expressed their ideal that in the future, intolerance will be cured, not DS. I could have added that the CDSS utterly fails to silence or deny the worth of people with DS based on what kind of DS they have or what their apparent abilities are. I did tell you directly that only autism advocates would leap to the irrational presumption that the CDSS is really saying that DS people (unlike all other human beings) do not need assistance or services, and that DS people (unlike all other human beings) never suffer at all and never face any challenges or difficulties.

But large portions of your article are founded on this kind of irrational presumption, which would be instantly spotted as both absurd and dangerous in any other disability area.

I have no idea where this bit of your article

"They say autism should be seen as part of the “neurodiversity” needed to evolve smarter human beings

and this one

"In blog discussions, autistics sometimes even speak of themselves as a “superior species”

and many others similar ("superpowers," etc.) came from, as they (and many positions attributed to "autistics" in your article) were not sourced. But as I noted above, a lot of autistics, myself included, consider that statements like these--and many of the views ascribed to autistics in your article--range from unfounded to ludicrous, extreme, offensive, dangerous--and/or pathetic. Etc. Many of us have publicly written a lot in criticism of and opposition to these views.

Yes, you are free to choose to report claims of unfounded, offensive, etc., views held by some autistic people--from whatever sources you wish. But reporting these views as though they were representative of "neurodiversity" or of autistics is dishonest and unethical. It is in the same neighbourhood as taking David Ahanakew's (or James Watson's) extreme and offensive statements, and reporting them, without naming their source, as being representative of the views of aboriginal people (or white people). And then seriously reporting the views of non-aboriginals (or non-whites) about these extreme and offensive positions held by aboriginal people (or white people).

The Globe and Mail should print a correction, clarification and apology. First, a correction--of the false information in your article that I'm an activist, which you dishonestly reported. Second, a clarification--to make it clear that many of the views you have ascribed to "autistics" or associated with "neurodiversity" are regarded by many autistics, myself included, as ranging from unfounded to offensive and dangerous, contrary to the strong and misleading impression given throughout much of your article. Third, an apology--for the problems caused by the false information printed in your article, as well as for recklessly and knowingly (you did not lack accurate, verfiable information) promoting harmful stereotypes of autistic people as a group.

I realize this request is ridiculous. It belongs in an as-yet non-existent world, where autism and autistics are taken seriously. As I've written before, autism advocates trivialize autism and in so doing, harm autistic people. Autism advocates, who claim to know what's best for all autistics, do not take autism seriously and, following their powerful and influential leadership, nor has the Globe and Mail.

Regards,

Michelle Dawson
Autism Specialized Clinic
Rivière-des-Prairies Hospital
University of Montréal

Autism and ABA in the UK: A controlled trial

2007-08-03T09:57:00.000-05:00

The ABA non-randomized controlled trial presented by Patricia Howlin at the International Meeting for Autism Research this year has recently been made available online. You can find the abstract of this in press paper here [edit: If you follow the link, you'll see that this paper has now been published]:

Magiati, I., Charman, T., & Howlin, P. (in press). A two-year prospective follow-up study of community-based early intensive behavioural intervention and specialist nursery provision for children with autism spectrum disorders. Journal of Child Psychology and Psychiatry.

As I wrote earlier, Dr Howlin's study is a prospective, community-based study comparing the outcomes of 28 autistic children receiving home-based intensive ABA-based interventions (the ABA group) with a control group of 16 autistic children receiving "autism specific nursery provision" (the nursery group). The interventions are described as being "typical" of ABA and nursery services available in the UK. The children were between 23 and 54 months and had a very wide range of IQs (16 to 138) at intake. They were followed up after ~26 months.

The ABA group received intensive 1:1 Lovaas-type ABA, with two children receiving additional Verbal Behaviour services. For 20 ABA group children, ABA services were provided by "recognised ABA organisations in the UK, Norway or USA", while the remaining 8 children had independent providers. The nursery group was distributed across 10 different schools. They received what would be called "eclectic" intervention, where the "most common named practices" included TEACCH, PECS (an ABA-based approach), Makaton, and SPELL (from a 2001 guide published by the UK National Autistic Society), as well as "other developmental and behavioural teaching methods".

And--as reported in the abstract--after a bit more than 2 years, there were no significant differences to report between the ABA and nursery groups in a multitude of outcome measures. On only one measure was a difference approaching significance found in favour of the ABA group (Vineland Daily Living Skills, where p=.06). In contrast, there were major individual differences among the children in progress made, regardless of which group the children were in.

As happens in non-randomized controlled trials, the two groups were not matched on many variables at intake. The authors accounted for only one of these unmatched variables--a significant difference in mean intake IQ which favoured the ABA group (83 for the ABA group; 65 for the nursery group). Other significant differences at intake (e.g., Vineland socialization, Vineland composite, parental education) favoured the ABA group and were not accounted for, while other unaccounted for differences favouring the ABA group were just short of being significant (e.g., the ABA group was younger at intake). None of the between-group differences at intake favoured the nursery group.

The authors also made no attempt to account for gender. The nursery group had a higher percentage (33%) of females than the ABA group (4%). In my view (and apparently, in the authors' view), this isn't a major issue and if anything--according to the lore that autistic females are at a disadvantage--this difference would again favour the ABA group.

The ABA group also had the advantage of receiving a significantly more intensive intervention than the nursery group, both at the outset of treatment and at follow-up, with the ABA group at ~33hrs/wk (range 18-40) and the nursery group at ~26hrs/wk (range 15-30). Within each group, intensity of intervention did not change from the outset to follow-up. That is, the children's need for services did not decrease over the course of about two years. The nursery group received little in the way of 1:1 intervention (6hrs/wk average, compared to the ABA group, where the full ~33hrs/wk was 1:1).

Because they received a more intensive intervention, the ABA group also received a significantly higher total number of intervention hours than did the nursery group--an average of 3415 hours versus 2266 hours per child. This is a difference of 1149 hours favouring the ABA group.

Using the average intensity of intervention for the ABA group, the ABA group received an equivalent of 35 weeks more in the way of intervention time than the nursery group children. Using the average intensity of intervention received by the nursery group, the nursery group received an equivalent of 44 weeks less in the way of intervention time than the ABA group children. That is, for the amount of intervention to be equivalent in both groups, the nursery group children would have had to receive an additional 44 weeks of intervention (at their average intensity of intervention).

On the other hand, this study found no relationship whatsoever between intensity of intervention and any outcome measure. This is keeping in mind that the range of intensity in the ABA group was 18-40hrs/wk. In my IMFAR poster this year, I mentioned the failure of the ABA literature to relate higher intensity of ABA-based interventions with better outcomes, and in Dr Howlin's study, that failure continues.

Another factor that had no effect on outcomes was age at intake. Whether the children were younger or older at intake, across the range from 23 to 54 months, made no difference to how well they did. The popular if not ubiquitous contention that, when it comes to autism interventions, "earlier is better" has failed--again--to be supported by evidence from a controlled trial (for a previous failure, right up to intake at age 7, see Eikeseth et al., 2002, 2007).

And regardless of the ABA group starting with an average IQ well within the "high-functioning" range (indeed, the intake IQ here for the ABA group is the same as the follow-up IQ in Lovaas, 1987), after ~2 years of intensive ABA, all children in this group were still receiving ABA services and none was in a mainstream school without 1:1 assistance. This is also regardless that almost one-third of the ABA group did not have the specific diagnosis of autism at intake, instead being assigned a subthreshold "ASD" diagnosis.

On average, neither group did well. They both made progress in age-equivalent scores but, as the abstract reports, standard scores changed little. Individuals either did well or did poorly, and this was unrelated to which kind of intervention they received, the intensity of intervention, or the age at which intervention began. This is similar to what was found in a recent Canadian observational study (Eaves & Ho, 2004).

Dr Howlin's study, like all studies, has weaknesses and limitations (and of course I want a lot more information about practically everything), some of which are addressed by the authors. I find it ironic that the authors argue for autism-specialized services by citing Cohen et al. (2006). While it is difficult to compare across studies, it could be argued that the control group in Cohen et al. (2006), which received completely inadequate services that no one should recommend (generic segregated special education of low intensity), fared better by the usual standards than both groups--the ABA group and the nursery group--receiving autism-specialized services in Dr Howlin's study. Dr Howlin and colleagues also fail to point out that when unmatched intake variables are accounted for in Cohen et al. (2006), the few significant differences between groups (ABA vs generic segregated special education) in all but one outcome measure (classroom placement) disappear.

Dr Howlin and colleagues conclude that:

Our data support the growing consensus that no one intervention for children with ASD is universally superior to all others (NIASA, 2003).
My own conclusion is one I've arrived at before: after more than 60 years of autism research, encompassing the colossal existing autism intervention literature, researchers still cannot scientifically claim to know how to help autistic individuals (Volkmar et al., 2004). The best adult outcomes reported in the autism literature continue to belong to individuals who grew up before the current era of early interventions and who as children met the narrowest, strictest autism diagnostic criteria ever devised (Dawson et al., in press).

I'm prepared to agree with Dr Howlin that autism-specific services are important. But even the evidence Dr Howlin and colleagues drum up in support of these services glaringly reveals how poorly autism research has served the interests of autistics. Even if you leave out ethical concerns that would be paramount with any non-autistic population, the major currently-popularized and -marketed autism educational interventions (as opposed to non-popularized non-marketed science-based approaches; see Aldred et al., 2004; Gernsbacher, 2006) leave little to choose from. Autistics deserve a whole lot better.

References:

Aldred, C., Green, J., & Adams, C. (2004). A new social communication intervention for children with autism: pilot randomised controlled treatment study suggesting effectiveness. Journal of Child Psychology and Psychiatry, 45, 1420-1430.

Cohen, H., Amerine-Dickens, M.S., & Smith, T. (2006). Early Intensive Behavioral Treatment: Replication of the UCLA model in a community setting. Journal of Developmental and Behavioral Pediatrics, 27 (S2), 145–155.

Dawson, M., Mottron, L., & Gernsbacher, M. A. (in press). Learning in autism. In J. H. Byrne (Series Ed.) & H. Roediger (Vol. Ed.), Learning and memory: A comprehensive reference: Cognitive psychology. New York: Elsevier.

Eaves, L.C., & Ho, H.H. (2004). The very early identification of autism: outcome to age 4 1/2-5. Journal of Autism and Developmental Disorders, 34, 367-378.

Eikeseth, S., Smith, T., Jahr, E., & Eldevik, S. (2002). Intensive behavioral treatment at school for 4- to 7-year-old children with autism: A one-year comparison controlled study. Behavior Modification, 26, 49–68.

Eikeseth, S., Smith, T., Jahr, E., & Eldevik, S. (2007). Outcome for children with autism who began intensive behavioral treatment between ages 4 and 7: A comparison controlled study. Behavior Modification, 31, 264-278.

Gernsbacher, M.A. (2006). Toward a behavior of reciprocity. Journal of Developmental Processes, 1, 139-152.

Lovaas, O.I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3–9.

Volkmar, F.R., Lord, C., Bailey, A., Schultz, R.T., & Klin, A. (2004). Autism and pervasive developmental disorders. Journal of Child Psychology and Psychiatry, 45, 135-170.

About that surge in autism

2007-07-18T08:23:00.000-05:00

So are autistics really going to take over the known world? We know there's been a staggering surge in irresponsible autism-related journalism. It's even hit the BMJ.

There's overwhelming evidence that 1 in 58 is not a genuine autism prevalence figure, but the product of shoddy and dishonest reporting (see Ben Goldacre here, looks like he's going to be in the BMJ on Friday, and the Times here). Nothing like irresponsible reporting to waste heaps of time and effort that could otherwise be spent in applying accurate information to help autistic people.

But what about that surge in autism? Is there one? This is not a popular position in our era of autism advocacy--but when in doubt, consult with the peer-reviewed data.

Here are 7 recently reported autism prevalence figures for children of various ages in the US and UK. All figures are for all autistic spectrum diagnoses combined. I've rounded them off to the nearest 5--autism prevalence figures don't come with pin-point precision. Here goes:

1 in 175
1 in 170
1 in 160
1 in 150
[1 in 150]
[1 in 150]
1 in 85
1 in 58

Wow, that looks like a big autism surge, even without that last figure. And those low/no standards for autistics so successfully pushed by autism advocates would demand that the 1 in 58 be tacked on at the end (there it is, in red, from shame). Now it looks like autism is surging even more.

I've also put two of the figures in square parentheses. That's because they're not quite like the other non-red figures. I'll get back to this.

Maybe we should look at when these figures were published in peer-reviewed journals, just in case it's informative.

1 in 175 (2000)*
1 in 160 (2001)**
1 in 150 (2001)
1 in 170 (2005)**
1 in 85 (2006)*
[1 in 150 (2007)]***
[1 in 150 (2007)]***
1 in 58 (not published)

That looks slightly less persuasive, but we could probably still argue that autism is surging, all the more so if we adopt autism advocacy standards for autistics and include the red-faced 1 in 58.

Or we could subject these studies to a bit of scrutiny. With two (non-red) exceptions, these studies meet two criteria: (1) they used DSM-IV or ICD-10 criteria for autism and the other autistic spectrum diagnoses; and (2) at least some of the counted children were directly assessed by the researchers using one or the other or both of the current standardized, quantified gold-standard autism diagnostic instruments.

The two exceptions are in square parentheses. They are US prevalence studies that don't meet my second criterion. They don't involve direct assessment of autistic children, instead relying on less reliable information from educational and/or medical records. But these two are very popular studies. I've included them (in parentheses) because their 1 in 150 has, since these studies were widely publicized early this year, often been reported as the prevalence of autism.

I've also paired up most of the studies. The ones with one asterisk (*) belong with each other. This pair of studies was done in the exact same geographic area. The ones with two asterisks (**) also belong with each other, and also were done in the same geographic area. And the ones with three asterisks (***) belong with each other too, and have some overlap in geographic area.

Regardless of geographic area, and keeping in mind the two criteria for studies I provided above, the pairs are paired in two different ways: studies using the same methodology with different birth year cohorts; and studies using different methodology with the same birth year cohort.

If autism is indeed surging, studies using the same methodology with different birth year cohorts should show autism prevalence increasing over time. And studies of the same birth year cohort using the same diagnostic criteria (DSM-IV or ICD-10) should show the same autism prevalence. If not, then the extent to which differences in methodology contribute to reported differences in prevalence would have to be contemplated--and this might inconvenience the "surging autism" contingent.

So if there really is an autism surge, we should find that the (*) pair represents two studies with the same methodology but different birth year cohorts, where the higher figure (1 in 85) is found in a later birth year cohort than the much lower figure (1 in 175). And we should find that the other two pairings, where the figures are the same (the *** pair, with 1 in 150) or nearly the same (the ** pair, with 1 in 160 and 1 in 170; this is not a significant difference), are studies of the same birth year cohorts done with whatever methodology, provided the same diagnostic criteria are used.

Well, it doesn't quite work out that way. In fact, it's the opposite. That (*) pair represents the same birth year cohort, different methodology. And those other pairs (*** and **) represent different birth year cohorts, same methodology.

That's keeping in mind that apart from the square parentheses (***) pair, and apart from the beet red 1 in 58, all the other studies meet both my own criteria--they use the same current diagnostic criteria, and they involve at least some direct assessment of children with one or the other or both of the current gold-standard diagnostic instruments.

How about ordering all the studies according to the years in which the children being studied were actually born. If that autism surge is autism reality, then we should see that surge, uh, surging right along as birth year cohorts become more recent. It's about time I named the studies, and I've kept the asterisks, just in case anyone's keeping track. Here goes again:

1 in 150 (1988-1995; Bertrand et al., 2001)
1 in 175 (1990-1991; Baird et al., 2000)*
1 in 85 (1990-1991; Baird et al., 2006)*
[1 in 150 (1992; ADDMN, 2007)]***
1 in 160 (1992-1995; Chakrabarti & Fombonne, 2001)**
[1 in 150 (1994; ADDMN, 2007]***
1 in 58 (1993-1997; not published)
1 in 170 (1996-1998; Chakrabarti & Fombonne, 2005)**

That didn't work out too well either. Now we don't have a surge at all, just a bunch of findings--spanning a decade of birth years--that are very close to each other, and (leaving out the crimson 1 in 58) one figure that looks like an outlier. But we can't attribute the 1 in 85 (it is actually 116.1/10,000) in Baird et al. (2006), a figure often rounded off to 1 in 100, to a surge in autism, because much lower prevalence figures have been found in several later birth year cohorts. Never mind that a much lower prevalence figure was found in the same cohort in Baird et al. (2000).

Indeed, what the two Baird et al. studies demonstrate is the dramatic effect methodology can have on reported autism prevalence within the same cohort--even when the same diagnostic criteria are used, even when there is an overlap in the standardized diagnostic instruments used (both Baird studies used the ADI-R), and even when the studies are conducted by an overlapping group of researchers. The two studies differ primarily in that the later study also used the ADOS, two of the diagnosing clinicians changed, and the method of case finding was altered. That was enough to double the reported prevalence within the same cohort.

In contrast, the two Chakrabarti and Fombonne studies show that applying the same methodology to different birth year cohorts results in the same autism prevalence. No surge in sight. The two in-parentheses studies, which are the now-famous CDC prevalence studies, show the same thing but with weaker methodology over a shorter timespan.

Autism advocates are free to seek that recent surge in autism--that catastrophic epidemic--in anecdotes, in education numbers or the CDDS, in sensationalist headlines and so on. This is all in keeping with the rotten standards of science and ethics they've imposed on autistics, and with their own steadfast resistance against verifiable information. But on the off-chance anyone's interested in the published, peer-reviewed data, I thought I'd go fetch some. If anyone finds any factual errors in the information I've presented, I'd greatly appreciate knowing. Accurate information is always good for autistics.

(Edit: Ben Goldacre's now had his say in the BMJ. You can find his column here.)

References:

Autism and Developmental Disabilities Monitoring Network Surveillance Year 2000 Principal Investigators; Centers for Disease Control and Prevention. (2007). Prevalence of autism spectrum disorders--autism and developmental disabilities monitoring network, six sites, United States, 2000. MMWR Surveillance Summaries, 56, 1-11.

Autism and Developmental Disabilities Monitoring Network Surveillance Year 2002 Principal Investigators; Centers for Disease Control and Prevention. (2007). Prevalence of autism spectrum disorders--autism and developmental disabilities monitoring network, 14 sites, United States, 2002. MMWR Surveillance summaries, 56, 12-28.

Baird, G., Charman, T., Baron-Cohen, S., Cox, A., Swettenham, J., Wheelwright, S., & Drew, A. (2000). A screening instrument for autism at 18 months of age: a 6-year follow-up study. Journal of the American Academy of Child and Adolescent Psychiatry, 39, 694-702.

Baird, G., Simonoff, E., Pickles, A., Chandler, S., Loucas, T., Meldrum, D., & Charman, T. (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Lancet, 368, 210-215.

Bertrand, J., Mars, A., Boyle, C., Bove, F., Yeargin-Allsopp, M., & Decoufle P. (2001). Prevalence of autism in a United States population: the Brick Township, New Jersey, investigation. Pediatrics, 108, 1155-61.

Chakrabarti, S., & Fombonne, E. (2001). Pervasive developmental disorders in preschool children. JAMA, 285, 3093-9.

Chakrabarti, S., & Fombonne, E. (2005). Pervasive developmental disorders in preschool children: Confirmation of high prevalence. American Journal of Psychiatry, 162, 1133-41.

Learning in autism

2007-07-05T11:56:00.000-05:00

Dawson, M., Mottron, L., & Gernsbacher, M. A. (in press). Learning in autism. In J. H. Byrne (Series Ed.) & H. Roediger (Vol. Ed.), Learning and memory: A comprehensive reference: Cognitive psychology. New York: Elsevier.

This book chapter, mostly written circa the fall of 2006, was accepted for publication recently. It's more like an encyclopedia entry, where there are four volumes to the (very ambitious, and expensive) encyclopedia, encompassing some 159 articles and more than 3,000 pages. So far as I know, this encyclopedia is scheduled to be published in early 2008. It should also be published online, making individual articles available.

Our piece of the encyclopedia was limited to ~6,000 words, which wasn't nearly enough, particularly given that we had to write for a general readership (which may or may not have any knowledge of autism).

Researching and writing this review article was a both an enormous challenge and a fantastic opportunity. Whatever its limitations (I never have any difficulty spotting limitations in my work or work I'm involved in), I hope our short overview of a neglected area of research will encourage a more systematic and rigorous study of learning in autism, of how and why autistics learn well and learn poorly.

Verbatim: John Staddon's error

2007-07-04T00:46:00.000-05:00

John Staddon, PhD (James B Duke Professor of Psychological and Brain Sciences and Professor of Biology and Neurobiology at Duke University), has a lot of published work in the area of the experimental analysis of behaviour (none of which I'm familiar with). As with every other Verbatim, providing a quote from Dr Staddon does not mean that I generally agree with his views--though in the case of this particular quote, it seems we both made the same error.

This shortest Verbatim in the short history of Verbatim is from a 2004 commentary Dr Staddon wrote in response to a review of one of his books:

I thought behavior analysis was science, not religion, but maybe I was wrong.

Reference:

Staddon, J.E.R. (2004). The old behaviorism: A response to William Baum's review of The New Behaviorism. Journal of the Experimental Analysis of Behavior, 82, 79-83.

A tale of two ABA studies

2007-06-15T11:55:00.000-05:00

Back from the far-away land of deadlines with some very-belated information from IMFAR (International Meeting for Autism Research) 2007, and some thoughts about researching autism interventions.

I saw two presentations involving data from early ABA-based interventions at IMFAR this year. Both studies are community-based.

A Canadian study was presented by Isabel Smith of Dalhousie (the abstract is here). Her ongoing study involves children in a government-funded ABA program in Nova Scotia. She was presenting data after one year for 27 autistic children with an average age just over 4yrs at intake, 6 of whom are described as "non-verbal".

Dr Smith reported improvements in various measures, 6 and 12 months after the children started in their ABA program. Does this mean the chosen ABA program is "effective"?

It looks like we'll never find out, because there is no intention of ever having a control group. Dr Smith cited ethical considerations as to why a control group was unthinkable.

That's a familiar argument: ABA-based interventions are known to be effective, so denying any autistic children the benefit of an ABA program is unethical. This is a subject in itself which I hope to get back to.

In this case, there's also the greater context: Dr Smith's study is an offshoot of the Nova Scotia government's decision to provide ABA-based interventions to autistic children in NS. First, the decision was made to fund the intervention (that is, provide a public program). Then the idea was to study it, once it was in place, to see if it worked.

So assigning children to a group that would be denied what had already become a government-provided program was out of the question. So far as I can tell, the utility of a non-randomized controlled trial (allowing for parents who might choose a different program for their autistic children) was discarded. Ergo--the effectiveness of this government-funded ABA program will be determined solely by an uncontrolled trial. This is now a CIHR-funded study.

And it all sounds like great news for autism advocates. ABA programs are indeed considered so effective--by governments, researchers, the CIHR, etc.--that controlled trials comparing the effectiveness of an ABA program to another program are rejected as unethical.

But the ABA program being funded by the NS government, and being studied in Dr Smith's uncontrolled trial, is a non-intensive, 15hrs/wk PRT (Pivotal Response Training) program. While PRT has some scientific support, there has never been a major controlled trial of PRT as a comprehensive autism intervention. So there has never been a major controlled trial of PRT as it is being studied and funded in NS. Regardless, non-intensive PRT is being assumed to be effective as a comprehensive intervention, in the absence of any evidence for this, such that any experimental design that risks being informative about its effectiveness is considered unethical.

Dr Smith's study is a ringing endorsement of the low/no standards of science and ethics that autism advocates have vigorously and successfully demanded for autistics. It is perfect evidence of why, in the presence of a massive bulk of autism intervention research, researchers still cannot scientifically claim to know how to help autistic individuals (Volkmar et al., 2004).

The other community-based ABA study was from the UK. It was presented with remarkable efficiency by Patricia Howlin. You can find the abstract here.

This study included an experimental group of 28 preschool children in early intensive ABA programs, and a control group of 16 children in "autism specific nursery provision" which, unlike intensive ABA programs, is fully funded by the UK government. Because this is a community study, the groups were not randomly assigned. Outcomes after one and two years were compared.

Dr Howlin showed graphed data from the experimental group kids first. As a group, they clearly improved over time in the chosen measures--just like the kids in Isabel Smith's study.

Beside these data, she then added the data from the control kids. It looked the same as the ABA kids' data. And indeed, she found no significant difference in outcome measures between groups after two years.

Instead, she found large individual differences among the children, regardless of which group they were in. Dr Howlin presented this data graphically.

Having presented her own data, she went on to present a mini-meta-study (well, I can't think of a better name for it) of ABA group designs. She started with the long list of how these studies are inconsistent with each other in multiple aspects of their design. Then she graphed how widely (and wildly) results in various measures differ among the ABA group designs where these data are available.

Dr Howlin's ABA study is in press at JCPP (Journal of Child Psychology and Psychiatry), but not yet available online. I'd like to see the paper before I comment any more on her actual findings. But if her findings hold up under scrutiny, they will be evidence of how autistics have been ill-served by the widely-accepted and -practiced autism advocacy position that true experimental designs--and more generally the scientific and ethical standards that serve to protect and benefit all non-autistics--are not something autistics deserve.

Reference:

Volkmar, F.R., Lord, C., Bailey, A., Schultz, R.T., Klin, A. (2004). Autism and pervasive developmental disorders. Journal of Child Psychology and Psychiatry, 45, 135-170.

How many hours is forty hours?

2007-05-11T09:24:00.000-05:00

For those interested, my first-author poster at this year's IMFAR (International Meeting for Autism Research) has been posted on the No Autistics Allowed website.

That would be this poster:

Dawson, M., & Mottron, L. (2007, May). How many hours is forty hours? Range of treatment intensity in Lovaas (1987). Poster presented at the International Meeting for Autism Research. Seattle, WA.

You can find it as a pdf linked to this page. This page also provides the full text for the excerpts of Leaf's testimony. These excerpts aren't clear on the small pdf of the poster, unlike on the original ppt version (if anyone wants the ppt version, they can write to me).

It is such an unconventional poster that I'm pretty sure we were all surprised it was accepted for IMFAR. The information we put forward raises a lot of interesting questions at multiple levels. One of the most basic questions for me was, does this kind of information belong in a venue like IMFAR? Is it autism research? The answer was yes (at least so far). This leads to more questions, about what to do with the information we have, and about what may or may not be accurate information in this case.

We don't, e.g., know who's right, or how many hours forty hours is. But for now it remains a possibility that if accurate information had been provided by Lovaas and colleagues going back 20 years, re treatment intensity in the experimental group in Lovaas (1987), then the subsequent behaviour analytic research in autism may have looked somewhat different than it does now.

Setting aside all the uncertainties and unknowns (in the absence of accurate information from the authors in question), it seems that there should be agreement on one point. Accurate information may not always serve the many vested interests of scientists, service providers, advocacy groups, politicians, and lobbyists. But accurate information always serves the real-life interests of autistics. Then it's a matter of deciding on priorities.

IMFAR was overwhelming, as usual (this was also the first IMFAR where I was involved in more than one presented study as an author), and this year I have a variety of post-IMFAR deadlines to make things a bit more challenging. I hope I'll eventually blog something useful about IMFAR 2007, once the haze clears and the dust settles.

The autistic person's burden

2007-04-03T14:21:00.000-05:00

The major media have been buzzing with stories about the crushing burden autistics place on non-autistics. This reporting stems in part from the journal publication of data also published in a 2006 book (with the unintentionally ironic title of "Understanding Autism"), summarizing every autistic life as a vast financial liability.

This is also partly the fanfare surrounding the release of Canada's Senate Committee autism treatment funding report, which is poetically called "Pay Now or Pay Later".

This title resonates with the advertising slogans of "diagnostic teams" in India, as recently reported in The Times. These diagnostic teams promise to eliminate disabled children--those lacking a Y chromosome--before birth, thus entirely relieving families of the massive financial burden of raising a female child. And they provide a compelling cost-benefit analysis in their slogans:

"pay 600 rupees now, save 50,000 rupees later”

The media have also been buzzing about the latest Autism Speaks creation, the Interactive Autism Network. This network, like its sponsor, was created without any autistic input whatsoever, and is likely to continue that way. Non-autistic parents of autistic children, in contrast, are welcomed as essential and expert collaborators.

In her most recent editorial, The True Meaning of Research Participation, Association for Psychological Science President Morton Ann Gernsbacher has written a powerful antidote to these two related problems: the wholesale exclusion of autistics from any decisions related to autism research, and the escalating rhetoric relegating autistics to the role of non-autistic person's burden.

Here she provides insight into how these two aspects of prejudice may go hand in glove:

It takes just a cursory stroll through history to view the shocking collage of groups deemed incapable of stepping up to the research plate. In 20th century psychological science alone, we have Mary Whiton Calkins, the brilliant protégé of William James who, by lack of a Y chromosome, was denied her PhD at Harvard (but who later became APA’s first female president). It’s quite unlikely that APA’s founder and first (male) president, G. Stanley Hall, believed that members of ethnic minority groups would be suitable research collaborators, given his disturbing attribution of “adolescent races” who “would be better in mind, body, and morals if they knew no education.”

Maybe we shouldn't be surprised that when females and non-whites were written off as unqualified to collaborate in research, they were also judged to be burdens and dependents on their natural superiors--as in "the white man's burden".

While it makes me blush, I strongly recommend that you follow the link to Dr Gernsbacher's column and read the whole thing, and contemplate who is a burden on whom.

No one has yet calculated the costs to autistics, and to society, of the current widespread autism advocacy effort to create a world where there are no autistic people at all.

The truly staggering costs of this effort, and its consequences and byproducts, are unlikely ever to be calculated. After all, autistics are now routinely judged as having and being nothing to lose. The only way we can possibly benefit society is to stop existing--surely, society can pay even less if the existence of all autistics is prevented? Surely society would be better, if only us suboptimal types who are dragging down society receded into history and vanished?

Unless autism advocacy--the autistic person's burden--is successfully supplanted by genuine science- and ethics-based efforts to assist autistic people, we will never find out what autistics can achieve and contribute, in a society where it is okay to be autistic.

The autism research rogues gallery

2007-03-28T14:35:00.000-05:00

Unfortunately, I don't have time or room to post all their photographs. So this isn't a proper rogues gallery--more like a rogues list.

This would be a list of researchers whose names appear on published or in-press peer-reviewed journal papers which find cognitive strengths in autistics, that is, which report data showing that autistics perform significantly better than non-autistics on various tasks or tests.

As I wrote in my first post here, autism advocacy is the widespread effort to make the world as free of autism--that is, of autistic people--as possible. According to autism advocates, autism research must support their autism advocacy needs and agendas. Otherwise, it should not be conducted much less reported. Researchers whose research designs (whether they like it or not) result in autistics outperforming non-autistics are therefore a bunch of rogues. We should be ashamed of ourselves for cluttering up the peer-reviewed literature with findings that are not going in the right direction.

Only authors of papers reporting data involving groups (autistics versus non-autistic controls matched in various ways) are included in this rogues list. Some researchers appear in the authorship of only one such paper; others appear in several. Here are the rogues:

Aldridge, Alcantara, J.M. Anderson, M. Anderson, Applebaum, Arguin, Barber, Baron-Cohen, Barrett, Bauman, Belleville, Bender, Bernard, Berthiaume, Bertone, Beversdorf, A. Bonnel, A.M. Bonnel, Brindley, Burack, Butler, Caron, Chawarska, Chen, Cherkassy, Chouinard, Cottington, Crucian, M. Dawson, de Jonge, Driver, Durkin, Egel, Enns, Faubert, Felopulos, Findling, Finn, Foxton, Frith, Gallun, Gernsbacher, Gilchrist, Griffiths, Hamilton, Happé, Heaton, Heilman, Hermelin, Hughes, Iarocci, Imhoff, Jarrold, Jelenic, Jemel, Jiminez, Joliffe, Just, Kamio, Kana, Keillor, Keller, Kemner, Klin, R. Koegel, Lahaie, Langdell, Lawson, Leekham, Lockyer, Lopez, Maley, Maybery, Ménard, Minshew, Mitchell, Moore, Morasse, Mottron, Nadeau, O'Brian, O'Riordan, Peretz, Pellicano, Plaisted, Pring, Prior, Okada, Rainville, Raymeakers, Robaey, Rodgers, Ropar, Roeyers, Rutter, Sakihama, Saksida, Saumier, Scheuffgen, Sears, Shah, Sheppard, B.W. Smith, Soulières, Spong, Stauder, Steinmetz, Stewert, Stone, Sweeney, Tager-Flusberg, Toichi, van der Meere, van Engeland, Volkmar, Weisblatt, Wheelright, Yamamoto, Young, Youngstrom

This is a very incomplete list--it's more or less off the top of my head. And in deference to ubiquitous and anti-scientific autism advocacy prejudices re autistic savants, I've left out the entire savant and hyperlexia literatures, which would add considerably to the above rogues. I've left out studies which have been presented at major research conferences, but have not yet been published--which means that well-known names (in autism or other fields) like Ullman, Mostofsky, Joseph and Strauss have for the time being been spared rogue status. If I had more time, I'd list all the rogue researchers' rogue universities, and I'm sure anyone versed in autism research can spot the knight--as well as the famous behaviour analyst--among the rogues.

I've also left out the problem of the impressive heap of findings in the peer-reviewed literature showing autistics performing as well as their non-autistic controls.

Autism advocates making sweeping "autism reality" assumptions about the functioning levels, "severity", etc., of the autistic participants whose strengths were advertantly or inadvertantly revealed by the rogues will be displaying their own unfamiliarity with the published literature in autism.

Intake IQ in Lovaas (1987)

2007-03-12T19:18:00.000-05:00

I'm grateful to Harold Doherty for providing me with a distraction from being pulverized at the Tribunal. Mr Doherty is doing science again, with the usual autism advocacy standards. This time, Mr Doherty takes on a "myth" about the intake IQs of the experimental group in Lovaas (1987).

So let's look at those intake IQs.

I'm not going to launch into a lecture about deviation vs ratio IQs. This is a relevant issue here, but it can largely be circumvented by using the measure Lovaas (1987) used at intake, the PMA (prorated mental age), and its derived ratio IQs. All the sources I cite are peer-reviewed journal articles with Ivar Lovaas in the authorship, and the information I provide can be verified from these articles.

Using the reported PMA in Lovaas (1987), the mean intake IQ in the experimental group is 63. This is an average score in the "mildly retarded" range.

In the "Method" section, Lovaas (1987) also reports that, at intake, 2 experimental group children were in the normal range of intelligence (IQ 70 or more); none was in the "mildly retarded" range (IQ 50-69); 7 were in the "moderately retarded" range (IQ 35-49); and 10 were in the "severely retarded" range (IQ 20-34). None was in the "profoundly retarded" range (IQ of less than 20). Dr Lovaas also reports that this distribution of IQ scores is "identical to that for Control Group 1".

But--even if you assign the normal range children an IQ of 100--I haven't been able to find any report of the range of ratio IQs for the whole experimental group--and also assign all the other children to the highest possible scores in their respective categories (7 children with 49 IQ; 10 children with 34 IQ), this does not even approach a group average of 63. Instead, the average is 46.

It is statistically improbable that all those kids had, at intake, the highest scores within their assigned ranges, and it also looks impossible for the two normal range children to have ratio IQs as high as 100 (this would be inconsistent with reported deviation IQs; McEachin et al., 1993). But even this exercise in trying to produce the highest possible average intake IQ falls well short (17 points) of the reported average.

In the "Results" section, Lovaas (1987) reports that at intake, there were 10 children in the "moderate to severe range", as opposed to the 17 ("moderate" plus "severe" children) reported earlier in this paper.

Smith et al. (1993) report that 5 of the 19 children in Control Group 1 in Lovaas (1987) were "high-functioning", that is, had an IQ of 70 or more at intake. This contradicts the account in Lovaas (1987), where it is reported that only 2 of the 19 children in both the experimental group and Control Group 1 had IQs in the normal range (70 or more). Smith and Lovaas (1997) report a total of 9 children (experimental group and Control Group 1) who have IQs of 75 or more. If this figure is correct, and if 5 of these children were indeed in Control Group 1 (assuming none of the kids with IQs over 70 had IQs under 75...), then 4 must have been in the experimental group. This leaves open the question of whether the experimental group might have included more than 4 children with IQs of 70 or more.

Smith et al. (1997) correctly report that all children with ratio IQs of less than 37 were excluded from Lovaas (1987). That is, none of the experimental group children in Lovaas (1987) was in the "severely retarded" range at intake. This is contrary to what is stated in Lovaas (1987), where it is reported that 10 children--the majority--are in this range.

Lovaas and Smith (1988) add that the average intake IQ of the 9 children who achieved "normal functioning" in Lovaas (1987) is "slightly under 70". In fact it is 70 (69.7), which would be considered (just) in the normal range. And "in the normal range" is another way to say "high-functioning".

Summary?

Lovaas (1987) does not include any autistic children whose intake IQs are in the "severe" and "profound" ranges. The average experimental group intake IQ is in the "mild" range, and the average for those children who achieved normal functioning is (just) in the normal--"high functioning"--range. And the distribution of intake IQ scores is incorrectly (and inconsistently) reported in Lovaas (1987).

These are data I absorbed long ago and carried around for a long time. Only when I saw Mr Doherty's latest foray into science was I reminded to cough them up. Autism advocates who use websites as authoritative sources miss all the fun (and avoid all the hard work) of looking at data from primary sources. As usual, any factual criticisms are welcome--and if anyone can find (I'm sure it's right in front of me somewhere...) a reported range of ratio IQs (not deviation IQs) for the full experimental group in Lovaas (1987), you'll be awarded a trip to that Tribunal hearing (or maybe not).

References:

Lovaas, O.I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9.

Lovaas, O.I., and Smith, T. (1988). Intensive behavioral treatment for young autistic children. In B.B. Lahey, and A.E. Kazdin (Eds.), Advances in Clinical Child Psychology, 11. New York: Plenum Press.

McEachin, J.J., Smith, T., and Lovaas, O.I. (1993). Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal on Mental Retardation, 97, 359-72.

Smith, T., & Lovaas, O.I. (1997). The UCLA Young Autism Project: A reply to Gresham and McMillan. Behavioral Disorders, 22, 202– 218.

Smith, T., McEachin, J.J., & Lovaas, O.I. (1993). Comments on replication and evaluation of outcome. American Journal on Mental Retardation, 97, 385–391.

Smith, T., Eikeseth, S., Klevstrand, M., and Lovaas, O.I. (1997). Intensive behavioral treatment for preschoolers with severe mental retardation and pervasive developmental disorder. American Journal on Mental Retardation 103, 238-249.

Verbatim: Matthew Belmonte's hidden abilities

2007-03-11T22:16:00.000-05:00

Matthew Belmonte spent four years working with Simon Baron-Cohen in Cambridge, and is now at Cornell. This passage, reflecting on priorities and presumptions rampant in autism research, is from a 2004 review.

It is quite remarkable and difficult to fathom that we currently have more functional imaging data about how the autistic brain processes a face or a theory of mind than we do about the way it processes, say, location, colour, orientation, or spatial frequency; at what level of processing do the perceptual and cognitive abnormalities begin? It is also important to recognise that absence of behavioural performance or functional activation does not necessarily imply incapacity of the corresponding brain subsystems. Rather, an apparent lack may be due to failure to engage an intact capacity. The proper stimuli or experimental paradigm can bring out such hidden abilities.

Reference:

Belmonte, M.K., Cook Jr, E.H., Anderson, G.M., Rubenstein, J.L.R., Greenough, W.T., Beckel-Mitchener, A., Courchesne, E., Boulanger, L.M., Powell, S.B., Levitt, P.R., Perry, E.K., Jiang, Y., Delorey, T.M., & Tierney, E. (2004). Autism as a disorder of neural information processing: Directions for research and targets for therapy. Molecular Psychiatry, 9, 646-643.

IMFAR 2007 abstracts

2007-03-07T15:08:00.000-05:00

The 2007 International Meeting for Autism Research (Seattle this year) schedule for oral and poster presentations has been posted here. I'm involved in three studies at IMFAR this year. Here are the abstracts for two of them:

Pervasive Developmental Disorders Specialized Clinic, Rivière des Prairies Hospital, University of Montreal

HOW MANY HOURS IS FORTY HOURS? RANGE OF TREATMENT INTENSITY IN LOVAAS (1987)
M. Dawson, L. Mottron

Background: 40hrs/wk of one-to-one treatment--the reported intensity of ABA-based intervention received by the experimental group in Lovaas (1987) and McEachin, Smith and Lovaas (1993)--is a benchmark in autism research.

Objective: To compare accounts of hrs/wk received by the experimental group in Lovaas (1987) and McEachin, Smith and Lovaas (1993).

Method: We compared detailed 2004 sworn legal testimony from a behavior analyst (Leaf) directly involved in treatment of 10 of the 19 experimental group children reported in Lovaas (1987) and McEachin, Smith and Lovaas (1993), to descriptions in published articles authored by Lovaas, Smith and/or McEachin.

Results: 34 published descriptions of hrs/wk in the experimental group authored by Lovaas, Smith and/or McEachin, report 40hrs/wk with no range; 4 descriptions (including 1 in both Lovaas, 1987, and McEachin, Smith & Lovaas, 1993) specify 40hrs/wk was a minimum (e.g. "40 hours or more per week", "more than 40 hours"); 7 specify an average of 40hrs/wk, including the only account by Leaf; 3 specify "normal functioning" children received 40hrs/wk; 1 is ambiguous; 2 specify "approximately" 40hrs/wk; and the rest are unqualified. Leaf testified (from Wynberg et al. v. Ontario; Leaf, pp. 16687-16692 [Compendium, Vol. II, Tab 23, pp. 692-697]) under oath that 40 hrs/wk was a group average; range in the experimental group was 18 to "in the 50 range" and that 2 of the 9 "normal functioning" children received 18 hrs/wk which diminished over time.

Conclusion: Leaf's testimony questions the influential premise that high intensity of treatment in Lovaas (1987) was essential in achieving "normal functioning". In the current absence of ABA controlled trials correlating treatment intensity with outcome measures, and considering the landmark status of Lovaas (1987) and its follow-up, we suggest that accurate data re treatment intensity and its relation with outcome measures be provided by the authors.

Sponsor: CIHR

Université de Montréal

INTELLIGENCE IN AUTISM: WHAT ARE THE GOOD PREDICTORS?
L. MOTTRON, I. Soulières, M. Dawson, M. Gernsbacher

Background: Recent findings of discrepancies between intelligence in autism as measured by Wechsler and Raven's Progressive Matrices (Dawson et al, in press) lead to the reconsideration of established relations between variables characterizing the autistic phenotype and intelligence level reached.

Objectives: To establish how early developmental milestones and cross-sectional adaptive level predicts the intelligence level measured by various instruments, including the Raven's Progressive Matrices.

Methods: All measures were extracted from the socio-demographic data of Rivière-des-Prairies Hospital's database, which contains diagnostic and cognitive information on approximately 200 ADI and ADOS-G positive autistics. Correlations were computed between age at first words/phrases-word and other ADI items at age 4-5 and subtests, subscales and global Wechsler intelligence level (WISC-III and WAIS-III), Raven intelligence level, and Vineland adaptation level in school-age children and adults.

Results: Age at first words/phrases was not significantly correlated with intelligence level achieved later in childhood or adulthood, whether measured with Wechsler Scales or Raven's Progressive Matrices. Furthermore, ADI scores (social, communication and repetitive behaviours) was not significantly correlated with intelligence in adulthood.

Conclusion: The age at which first words or phrases are spoken by in autistic children does not predict intelligence level achieved later in childhood or adulthood. Also, ADI scores, often taken to index the so-called "severity" of autistic symptoms, does not predict cognitive outcome in adulthood.

Sponsors: CIHR