Friday, June 13, 2008

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.

22 comments:

concerned heart said...

I agree with you. Autism Speaks has an agenda and is making a killing off of autism. When an article comes out that points to older fathers as a cause of some autism, the scientist Andy Shih on their staff came out in an interview saying the research points to older mothers. What do the facts matter to Autism Speak's agenda? They don't matter. You might be interested in this new article by a clinical geneticist: http://www.news.com.au/heraldsun/story/0,21985,23849196-5000117,00.html

Anonymous said...

Thank you for blowing the whistle on this. I hope that someone in the mainstream media will publicize and question those numbers. I think that many people would see that 1 in 53 statistic and find it patently unbelievable. And start to wonder if this is all hysteria.

Autism Speaks collects money through fear and intimidation. For many parents, it seems that autism is lurking in the basement or under the bed, just waiting to snatch your child. AS counts on and actively promotes that terror to raise funds. It's shameful and demeaning to humanity, not just autistics. It needs to stop.

Anonymous said...

Hope things have been going well for you Michelle!

Interesting discrepancy, but if their standard unit of measure is the million, and they are allowed rounding error, then they would be allowed to miss 1/2 of the unit of measure.

I still think from an advocacy agency working with multiple millions (of dollars that is), and book keeping accountants and scientists as you mention, that they should be as accurate as possible, which indeed doesn't seem to be the case from your critique.

Keep up the good work!

Patrick

Marla said...

How frustrating that the figures never seem to be accurate.

It is sad that people don't want or know to take advantage of the vast amount of knowledge adults with Autism could share with parents who have children who are Autistic.

Camille said...

Do you think it would help if more of us got on the phone and called Autism Speaks and asked how they get their numbers? If so, is there a particular phone number that you might recommend?

I don't mean to harass them with a million phone calls, but to get their attention with maybe a dozen or so.

Anonymous said...

Interesting analysis. I hope you would not be offended if I checked the figures for myself, rather than took your word for it.

Meanwhile, here is a quid pro quo for you to check: the percentage of Autism Speaks' financial activity that supports and helps families of people with autism now, rather than funding research to eradicate the condition, is 0%.

That's right: Autism Speaks does NOTHING to help people who have autism, their families or their carers. They exist solely and totally to fund medical research into future cures and preventions.

jonathan said...

autism speaks does nothing to help autistic people? Gee don't tell that to Michelle's mentor Dr. Lauren Mottron whose post-doctoral fellow Luc Keita receives funding from autism speaks http://www.autismspeaks.org/science/research/grants/funded_2006_mentor_based_fellowships.php

It might hurt Michelle's feelings if you tell her Dr. Mottron who she has worked for for a fairly long time now mentors graduate students who get funding from this organization which would imply that he does NOTHING for autistic persons.

Michelle Dawson said...

In response to Camille, you can find "communication" in Autism Speaks' phone menu (they don't have a receptionist any more, it seems). I spoke with someone in communication. That seemed to be the right place to go ask questions. Whether it's the right place to go get answers is another thing.

In response to Jonathan Mitchell, I don't follow Mr Mitchell's logic (it's too sophisticated for me), but here's a response anyway.

Dr Mottron's group is at times funded by the CIHR, among other public and private funding bodies. My public writing includes criticism of the CIHR, and I have criticized the CIHR in many other ways.

The CIHR (like the NIH, and all public and private autism funding bodies) should not be above scrutiny or criticism of its public actions and statements. A credible organization funding scientific research will seek and appreciate scrutiny and genuine criticism of its public actions and statements.

So Autism Speaks should not be above scrutiny or criticism of its public actions and statements. Apart from its much more public face, Autism Speaks is (so far) a credible private autism funding body, the largest one in the world. Autism Speaks has a credible review process involving credible reviewers (some of whom I've worked with). This status, mentioned in my post along with Autism Speaks' influence on public spending, makes the inaccurate information that Autism Speaks forcefully disseminates all the more inexcusable and harmful.

Autism Reality NB said...

Jonathon said:

"It might hurt Michelle's feelings if you tell her Dr. Mottron who she has worked for for a fairly long time now mentors graduate students who get funding from this organization which would imply that he does NOTHING for autistic persons."

Good point Jonathon. By the way what have Dr. Mottron or Ms Dawson contributed to the lives of autistic children OR adults? Nothing that I can point to. To the contrary, she works hard to prevent parents in Canada from obtaining government funding for interventions to help their own children.

Michelle Dawson said...

Thank you to Mr Doherty for his usual contribution to the public discourse about autism.

I don't know what Mr Doherty's (or Mr Mitchell's) position is re the epidemiology of Autism Speaks, which is the subject of the post here. Mr Doherty did not seem to consider it worth discussing in a productive way that would risk helping autistic people.

However, I was already aware that Mr Doherty considers all those who fail to agree with him to be reprehensible. My guess is that many people have been aware of this for a very long time also.

I'm still waiting for Mr Doherty to provide any factual criticism of my formal or informal work. I've indicated many times how much I would welcome and appreciate this kind of genuine, factual criticism.

Instead, not only does Mr Doherty repeatedly reveal how unfamiliar he is with the easily available work of those he berates, he has also displayed strong opposition to accurate reporting from primary sources, at least when those being reported about are autistic.

In doing so, Mr Doherty exemplifies the autism advocacy position that autistics don't deserve to benefit from or be protected by recognized standards of science and ethics.

Joseph said...

By the way what have Dr. Mottron or Ms Dawson contributed to the lives of autistic children OR adults?

I can tell you for a fact that Michelle's work is being cited by parents in situations where the school system is underestimating the cognitive potential of autistic children. I won't give details, but it is.

jonathan said...

Hi Michelle, yes, I agree there is nothing wrong with you questioning the epidemiologic statements of Autism Speaks. I don't think they got that figure out of thin air though. I remember about four years ago the organization unlocking autism also cited the 1.5 million figure as well so it is not just autism speaks. Actually i think it is based on the onetime CDC autism alarm prevalence estimate of 1 in 166 than the more recent 1 in 150. Maybe if you multiply 1.5 million by 166 you will get an approximate population of what the U.S. was at the time the statement was first made, other than that, to tell the truth I don't know where they get the figure and i hope they give you a good answer. However, if you are going to question autism speaks you might as well question unlocking autism and other organizations that quote that same figure because it is not just autism speaks.

I presume since you regard autism speaks as a credible organization you do not agree with many neurodiversity adherents that autism speaks is somehow trying to commit genocide and is trying to eradicate autistics, since you seem to be so concerned with rights for autistic persons if this were true and you agreed with it, your mentor Dr. Mottron it would seem to me would be guilty of the most flagrant violation of the rights of autistics imaginable.

I presume you also disagree with the anonymous poster who states that autism speaks does NOTHING for autistic persons.

Alain said...

To answer Mr. Doherty, Dr. Mottron run a clinic to provide a number of services which I am using at the moment to fix housing and financial problems which I had over many years. He also does it for many other autistic adults.

Alain

Autism Reality NB said...

Alain

Thank you for the information about Dr. Mottron's contribution. That does sound positive. Much better than Dr. Mottron's efforts to prevent federal funding of ABA interventions for autistic children in Canada.

Canadians are fortunate that we have access to credible American sources of information such as the American Academy of Pediatrics, the Association for Science in Autism Treatment, The MADSEC (Maine) Autism Task Force, the Office of the US Surgeon General, and the New York State Department of Health to provide credible information about the efficacy of autism interventions. Together with strong provincial autism advocacy efforts we are making progress in several provinces despite the efforts of Dr. Mottron and Ms Dawson.

Michelle Dawson said...

In response to Jonathan Mitchell, my statement re credibility and Autism Speaks was specific to how Autism Speaks decides which grant applications it receives should be funded.

Scientific research can be judged, among other ways, by whether it has credible funding. "Credible" means that submitted grant applications are subject to peer review via individuals recognized in their field.

So far, Autism Speaks meets this criterion as a funding body (see some of their recent peer reviewers here; at a glance, I've collaborated with three of them).

The reason I singled out Autism Speaks is mentioned in my original post.

I can't do much about what Mr Mitchell presumes, and his views continue to be too sophisticated for me to decipher. But in general, all scientists involved in a field have a responsibility to improve the research in that field, at the level of science and ethics. This includes doing what is possible to ensure that credible funding (and so far, Autism Speaks is a source of credible funding) is allocated to research incorporating the highest possible standards of science and ethics.

If Mr Mitchell believes, as he seems to, that the Dr Mottron's work and mine also are about genocide, eradicating autism, etc., then I can't help him much.

Michelle Dawson said...

Setting aside Mr Doherty's signature lofty disregard for the subject of the original post, I'm afraid I still disagree with him that ABA-based autism interventions should be above all scientific and ethical scrutiny.

And I still disagree with Mr Doherty that not one person should speak out when autism advocates write off most autistics in Canada. That would be autistics who have not, for many reasons including that we are too old, undergone unlimited ABA-based interventions starting early in life.

My position is that autistics deserve the recognized standards of science and ethics that automatically protect and benefit Mr Doherty. And Mr Doherty is sure that any attempt to promote these recognized standards for autistics (which is what I've done) is a reprehensible obstacle standing in the way of ABA-based autism interventions being mandated as public policy.

One example of what Mr Doherty wants for autistics: the unrefereed MADSEC report, which fails to locate a single RCT in support of ABA-based autism interventions, not only heavily depends on Lovaas (1987) and follow-up (as do other sources Mr Doherty provides; this study is dependent for its results on aversive procedures), but also uncritically promotes a large-by-ABA-standards study recommending the use of punishment in the form of basket holds (Hagopian et al., 1998), which have been fatal.

Other examples of what Mr Doherty wants for autistics are here and here.

R. Gerald Lovejoy said...

Thanks for your great article, Michelle!

It just goes to show that there are two things we can rely on: the innumeracy of the public and the lack of fact-checking employed by media outlets.

Michelle Dawson said...

For an update about Autism Speaks' 1.5 million figure, see this TMoB post.

Michelle Dawson said...

There's another update here. In case anyone's interested.

Michelle Dawson said...

... And, further to the two updates above, Autism Speaks has now (as of the afternoon of June 30, 2008) corrected Autism Speaks' May 13, 2008 press release, in which Autism Speaks' president states that there are 1.5 million autistic children in the US.

Autism Speaks originally promised to make this correction on June 17, 2008. Their failure to do so prompted me to remind them on June 30, 2008.

Autism Speaks' press release has been modified to read "1.5 million individuals" instead of "1.5 million children."

Autism Speaks still has not been able to explain the figure of 1.5 million for number of autistic individuals in the US. But I'm sure they'll come up with something, any day now.

Michelle Dawson said...

... And further to all the updates above, there's another one here.

Anonymous said...

You ought to hear what a 13 year old boy with Asperger Syndrome says about Autism Speaks. It will have you rolling on the floor laughing.

It's only a few lines at the end of this podcast: "Special Feature Interview with Douglas Giesel and An Update Interview with Lewis Schofield" but it is worth listening to.

Midnight In Chicago puts it out and it cnan be found here: www.mic.mypodcast.com