Remembering Marla Comm

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

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

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

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

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

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

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.