ABA success stories

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

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

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

"... 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

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.

About that surge in autism

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

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

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

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?

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.