Even more Autism Speaks epidemiology

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

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

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

Autism Speaks' epidemiology is characterized by two overlapping themes. One is an absurdly dishonest and contradictory reporting of the easily-available evidence. The other is a pervasive disrespect for autistics, whose lives Autism Speaks expediently and anti-scientifically denies.

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

The prevalence of autism has increased tenfold in the last decade.

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

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

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

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

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

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

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

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

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

November, 2007: "1 in 10,000 just fourteen years ago"

In these statements, Autism Speaks is--at least--also erasing the lives of more than 98% of autistics who existed more than 14 years ago.

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

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

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

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

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

Verbatim: Autism advocacy rules

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

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

Reference:

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

ABA success stories

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.]