This post is about the propaganda methods of Autism Speaks and is in response to their Call for Action letter. While their intentions may be good, these questionable tactics do harm to the very constituency they claim to represent.
It is a sad day when an advocacy group seeks to undermine and destroy their own constituency. Rather than emphasizing the strengths and triumphs of those they advocate for, they talk about how this group destroys families and is a burden on society. Rather than seeking tolerance, understanding, and acceptance, they seek to eliminate their constituency. Rather than having a measured and informed dialogue, they spread disinformation and pander to sensationalist hysteria.
This is Autism Speaks.
At times people use strong language when talking about problems. For instance many people say they want to eradicate cancer, or eliminate poverty. These are admirable causes, but they are distinctly different from wanting to eradicate autism. Cancer and poverty are externalities. If you remove cancer from the person, the person still exists. In contrast, autism is a neurological phenomenon. Eradicating or removing autism  removes the person. Many in the autistic community are particularly concerned about the ramifications of prenatal testing as a form of eradication [22, 23]. If autistic people were a religion or ethnic group, then this would constitute genocide, which is defined in part as “imposing measures intended to prevent births within the group” . Speaking of genocide, those who commit it often resort to spreading disinformation to further their cause . Autism Speaks exaggerates numbers to inflate the so-called crisis. Autism Speaks claims that “we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing” . Since they don’t cite their references, where does this number come from? A bit of research leads you to numerous publications, including the CDC web site, which provides this highly cited statistic from 2009 : 1 in 88 children have autism. There are approximately 315 million people in the United States (and assuming the same prevalence rate), which implies that there are 3.6 million people with autism. Unfortunately these numbers are misleading and do more harm than good.
The problem with these alarmist and hurtful claims is two-fold: irresponsibly taking at face value broad incidence rates and then associating the extrapolated total exclusively with the autistic people with the most needs. Even the CDC has reservations of their counting methodology. Other studies  cite similar reservations, particularly since definitions for autism are neither static nor consistent. In terms of survey methodology, the CDC uses a broad definition of autism, which includes most of the DSM IV diagnoses that fall under the category of Autism Spectrum Disorders. The CDC also says that the increased prevalence of autism is likely influenced by the increased awareness and tools to detect its symptoms . This means that despite an increased prevalence the cause could actually be derived from our heightened awareness of the condition. (They do also warn that it is unclear whether this is the most significant factor.) A similar phenomenon happened in AIDS research where there was significant undercounting of cases . In the case of autism, the question is whether it is the outbreak of an epidemic like AIDS or is a neurological type that has existed for millennia but simply never codified as a so-called disorder. Throughout history people have often been persecuted for being different. Before the use of science to describe the inner workings of the mind, Hallowell tells us that people were diagnosed from a moral perspective with terms that described the person as possessed or evil and so they “risked being tortured, even put to death”  as forms of “treatment”. People relied on such a simplistic view because they didn’t have a scientific understanding of the mind. Even as the science advanced, many refused to accept the evidence and the stigma persisted, which continues to this day .
This is Autism Speaks.
Considering that the definition of autism is still in flux (see for example the differences between DSM III, IV and V) , it is plausible that the incidence rate is severely biased by not only the survey methodology but the definitions of the conditions themselves. “For example, the U.S. special education classification of autism was introduced only in 1994, and some of the rise in reported prevalence is certainly related to expansion of the boundaries set for behaviors consistent with an autism phenotype” . Other studies point to a prevalence rate of about 60 per 10,000 when looking at the spectrum of ASDs . Therefore it is quite suspect to claim unconditionally (and without references) that there are 3 million autistic children and accelerating. These sensational claims are used as hyperbole to stir up a hysteria around autism and more generally the neuro-diverse community.
The second point is more insidious. To create a sense of crisis, Autism Speaks wants people to think that each autistic person has negative value and the world and their families would be better off without them. Autism Speaks claims that autistics “largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help” . Autism Speaks is clearly exploiting selection bias to infer that everyone on the spectrum is high-need and a burden to society. It may be that some autistic children struggle with these issues, but it is grossly irresponsible to extrapolate this situation to all 3 million children claimed. These types of challenges are certainly not in the diagnostic criteria nor common symptoms  for classical Autism, Asperger’s Syndrome, nor PDD-NOS, which are all diagnoses included in the prevalence estimates.
Furthermore there are plenty of anecdotal counterexamples of independent autistic, neuro-diverse people that are contributing to society and enjoying life. Even those requiring comprehensive assistance are able to communicate, make friends, and enjoy life given the appropriate environment [13, 20]. Part of what makes a society civilized is our compassion to help those with greater needs so that they may lead a fulfilling life despite their challenges. It is a tragedy when advocacy organizations instead spread fear, negativity, and intolerance about those they serve.
This is Autism Speaks.
Sadly Autism Speaks is not alone in irresponsible and wild claims. An article written by a Harvard professor and referenced by Autism Speaks is one of many sources of misleading data extrapolation while simultaneously giving Autism Speaks an air of legitimacy [11, 12]. This Harvard study includes so-called indirect costs, which greatly inflates the dollar amount for care. (Note that many of the studies and research that Autism Speaks cites are difficult to obtain [19, 24], so you are forced to accept their numbers at face value.) To understand indirect costs, they are akin to the costs associated with “lost productivity” because of a snowstorm or calling in sick. The NIH estimates that about 60.8% of costs associated with serious mental health issues are indirect costs due to lost wages . Let’s assume for sake of argument that the costs associated with serious mental illness are similar to autism. This implies that only 39.2% of the estimated $2.3 million lifetime cost is associated with direct costs, which is about $900k. Remember this is over a lifetime, so this amounts to ~$14k a year assuming 65 years of continual and constant assistance. Compare this to the $80k annual cost of a nursing home or the $50k average annual cost of incarceration . But Autism Speaks takes this at face value along with the assumption that everyone with an ASD requires this level of service for their whole life. It doesn’t take a statistician to understand that these sorts of extrapolations are gross estimates at best. Clearly there are numerous people on the autism spectrum that do not require lifetime services, just as there are people not on the spectrum that require comprehensive assistance, like the blind or diabetics.
As a thought experiment, consider another demographic with special needs. The current median annual cost for a nursing home is $80,000 . The elderly rack up $10 billion a year in hospital bills for pneumonia alone . And don’t forget that the senior population is one of the fastest growing segments of the United States and is expected to triple in the next 50 years . Using the logic of Autism Speaks, perhaps we should be advocating to find ways to cure and eliminate the elderly who are unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.
This is Autism Speaks.
0 Suzanne Wright, Autism Speaks to Washington – A Call for Action, 2013,
1 Autism Every Day
2 Wikipedia, Genocide
3 Narayanaswami, K, Analysis of Nazi Propaganda
4 NIH, Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008
5 Thomas H. Maugh II, LA Times, HIV cases undercounted for a decade
6 Hallowell, Delivered from Distraction
8 ASAN, 2013 Joint Letter to the Sponsors of Autism Speaks, 2013
9 Black, et al, Brief Report: IQ Split Predicts Social Symptoms and Communication Abilities in High-Functioning Children with Autism Spectrum Disorders, 2009
10 Newschaffer, et al, The Epidemiology of Autism Spectrum Disorders, 2006
11 Autism Has High Costs to U.S. Society, 2006
12 Autism Has High Costs to U.S. Society
13 Twitter #boycottautismspeaks
14 Nursing home costs top $80,000 a year, 2013
15 Agency for Healthcare Research and Quality, Healthcare Costs
16 National Estimates of the Quantity and Cost of Informal Caregiving for the Elderly with Dementia
17 NIMH, Annual Total Direct and Indirect Costs of Serious Mental Illness, 2002
18 Too many laws, too many prisoners, 2010
19 Autism Speaks Autism’s Costs to the Nation Reach $137 Billion a Year
20 Georgetown: Say No to Autism Speaks, 2012
21 Suzanne Wright, Autism Changes Everything, 2008
22 MJ Carley, The Autism Speaks Conundrum, 2009
24 Autism Speaks, New Research Finds Annual Cost of Autism Has More Than Tripled to $126 Billion in the U.S. and Reached £34 Billion in the U.K., 2012
25 Autism’s fight for facts: A voice for science, Nature, 2011
26 NIH, Autism Fact Sheet
27 Mohammad Ghaziuddin, I Luke Y. Tsai, and Neera Ghaziuddin, Brief Report: A Comparison of the Diagnostic
Criteria for Asperger Syndrome, Journal of Autism and Developmental Dborders, 1992
BTW, this is not the first time Autism Speaks has done strange things with numbers, according to autistic researcher Michelle Dawson: http://autismcrisis.blogspot.com/2008/06/epidemiology-of-autism-speaks.html
There’s one point I think you should add. As you point out, there are 3.6 million autistic people, and Autism Speaks says there are 3 million *children*. This means that, to them, the number of present-day autistic adults is negligible. This says a lot about how they view autism, and perhaps, why they ignore the voices of autistic adults.
Brian Lee Yung Rowe said:
Thanks for the kind words. This is a great point you raise. I’ll try to write about that as a follow up piece.
Very well done!
Brian Lee Yung Rowe said:
Thanks, I sincerely appreciate the feedback.
Added to https://en.wikipedia.org/wiki/Talk:Autism_Speaks/Controversy_links