Anemone's Research Emporium

Why Autism Speaks doesn't speak for me

Anemone Cerridwen
February 26, 2009

I've been hearing rants about Autism Speaks on Wrong Planet for close to a year now - "they're eugenicists who want to remove us from the gene pool; they don't include autistic voices; they sic their lawyers on autistics who disagree with them" - but I was never really motivated to check them out until they teamed up with the Lindt Gold Bunny. Then I hit the roof.

So what is it with Autism Speaks? I investigate . . .

They don't really tell you what they're about on the first page, but when I dug down I found this statement on their goals page:

"At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.

We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals."

and so on and so forth. Sounds nice, I guess.

Basically they're dedicated to raising funds for research, and allocating those funds where they see fit. Fine, as far as it goes.

So where do they allocate their funding? The Science Overview page indicates there are four main areas of research focus (quoted from the page):

Etiology (Causes): Why does someone get autism?
(research in "genetics, environmental sciences and epidemiology")

Biology: What are the biological problems associated with autism?
(research in "neurosciences, physiology and molecular biology")

Diagnosis: How do we know if someone has autism?
(research in "behavioral and biological methods of diagnosis as well as characterization of the autism phenotype")

Treatment: How can we help individuals with autism?
(research in "behavioral, biomedical and technological methods of treatment and intervention services")

There is no specific allocation of funding to research on adults versus children. In general, most funding tends to go towards studying autism in children. But again, it doesn't sound that bad.

So what's the problem? The problem is in how they portray autism.

How does Autism Speaks perceive autism?

From the What is Autism? An Overview page:

"Autism impairs a person's ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Symptoms can range from very mild to quite severe."

Umm. That doesn't sound like a plague that needs to be dealt with urgently. A problem at times, certainly. But the sky is falling? Not really.

And how do autistic people turn out? From Teens and Adults page:

"In short, he or she is only truly limited by his or her own abilities and interests, which holds true whether one is autistic or not."

I have not viewed the infamous Autism Every Day video, in which a parent allegedly talks about wanting to kill her child (because of the diagnosis) in front of the child, but I've heard about it. (I can't figure out how to view it on my computer, but you can find it here.) They really do think the sky is falling when a child is diagnosed with autism. Yet their description of autism seems not so bad. So what's the big deal?

Here is one possible answer (from the Learn the Signs of Autism page):

"No big smiles or other warm, joyful expressions by six months or thereafter"

Apparently if you're not an outrageous flirt in infancy the sky is falling.

It's important to remember that the things non-autistic people care about with respect to autism are often not the same things that autistic people ourselves care about. Like being conventional and outgoing. (Though I would like to remind parents who lament that their child will never win the Miss America Pageant that Heather Kuzmich didn't do that badly on America's Next Top Model. She was even popular!!!) And yes, I may be missing the point (lack of flirting is a potential indicator), but so are the parents who get worked up about surface details. The real point is that we want to be liked for ourselves, same as everyone else.

Here is another possible answer (from Facts about Autism page):

"More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined"

"Incidence vs. Private Funding

• Leukemia: Affects 1 in 25,000 / Funding: $310 million
• Muscular Dystrophy: Affects 1 in 20,000 / Funding: $175 million
• Pediatric AIDS: Affects 1 in 8,000 / Funding: $394 million
• Juvenile Diabetes: Affects 1 in 500 / Funding: $130 million
• Autism: Affects 1 in 150 / Funding: $42 million"

What is this, a pissing contest? "Your kids' problems are getting more funding than my kids' problems?" Sheesh!

Fear mongering is a good way of raising funds, and Autism Speaks wants to raise funds. So they paint a scary picture: It's an emergency! An epidemic! We have to do something! And the funds pour in. (They are doing a lot of work to get those funds to come in, too.) Portraying autism as an emergency epidemic may be good for fund raising (and some people just seem to enjoy getting worked up about things), but it is bad for those of us who have to live with the condition. They are portraying us in such a way that actually makes it harder for us to get accommodation in society. They are giving society the message that if people donate enough money, scientists will find a way to cure our autism, so then no one has to figure out how to deal with us. And in the meantime, we're so hopeless people may as well ignore us and exclude us anyway. So we continue to be shelved, since experts are working hard at figuring out how to make us go away, and it will be any day now!

I think it's important to understand that autism is a lifelong neurological condition. It is stable. It is not fatal. It not an illness like leukemia, AIDS, or diabetes, that can kill or be cured. So comparing autism funding with funding for these categories is unfair. It would probably be more appropriate to compare autism with blindness or deafness, which are also stable lifelong impairments that require some support but are not fatal in and of themselves. And if autism organizations compared us to the blind and the deaf instead of the terminally ill, society would probably start to "get" some of the accommodations we need, and why we need them. And then maybe we'd actually be included for a change.

Unfortunately, I get the impression that the good folks at Autism Speaks actually believe their own hype, and truly think that the only way to improve the quality of life of autistic people is to cure our autism, as if autism is a disease like leukemia. And if they wait for a cure for autism before autistic people are allowed the right to quality of life, we have a long wait ahead of us. And in the meantime . . . ?

And then there's the issue of how they deal with autistic adults

They don't seem to include autistic adults in their policy making at any stage that I can see. Their leadership page lists all sorts of people with business and fund raising skills, as well as some scientists. (They also have an impressive list of scientists on their advisory board and science committees.) Some of these people are parents of people with autism, but none of them are autistic themselves as far as I can see.

Compare this with the most autistic friendly support organization not run exclusively by autistics: the National Autistic Society (NAS) in the UK. As they say on their home page "We champion the rights and interests of all people with autism and aim to provide individuals with autism and their families with help, support and services that they can access, trust and rely upon and which can make a positive difference to their lives." Note the emphasis and the order of importance: Rights and interests of people with autism. They even have a document on self-advocacy for adults with autism (page works in Firefox but not Safari). I don't know how the NAS goes about including autistic voices, but they sure seem to be making an effort to do so. (The NAS is unusual this way. Most autism organizations are parents' organizations that don't systematically consider the autistic point of view.)

On the other hand, Autism Speaks has actually taken legal action against two autistic people who publicly disagreed with their approach. In one case, an autistic person created an Autism Speaks parody website called NTSpeaks.org, and Autism Speaks got it shut down, though later other autistic people posted other parodies elsewhere (Biever, 2008). In another case, an autistic person was selling a T-shirt that said

" 'Autism Speaks' can go away. I have Autism. I can speak for myself."

Autism Speaks got the online vendor to drop his product, and he had to find another venue to sell it. (See this Wrong Planet article for more details.)

Autism Speaks whitewashes outcomes in autistic adults (as quoted above). Even though they want to cure autism, they reassure parents that their kids will turn out all right. So why cure it? And how do they know? There is almost no research on outcome in adults, anywhere, and what there is indicates a low employment rate and a low rate of independence. Autistic adults may also be at higher than average risk of homelessness, hospitalization, or prostitution, among other possibilities. But nobody really knows. And there really isn't any solid information on what would help, either. How much of this is the autism and how much of this is lack of support? Autistic people often get less support than people without disabilities, because our disability interferes with social interactions.

So is Autism Speaks trying to research outcome in adulthood? Solid data on how adults turn out would probably be useful, don't you think? And they have all this research funding, "over 69 million dollars" so far. Apparently not. There is no funding dedicated specifically to autism in adults, though individual researchers can always study adults if they want. If Autism Speaks were to dedicate 25% of their funding, or even only 10%, to research specifically on what autism is like in adults, think of the confusions they could clear up! At least some of the parents' fears could be allayed, and then people could concentrate on the areas that matter most in the long term. If only.

The only mainstream (i.e. not run exclusively by autistics) group that is really trying to do something in this regard appears to be the National Autistic Society (them again), which is lobbying for a national census of autistic people in the UK so they can get some solid data. NAS also lobbies for increased resources for autistic adults, and runs an "I exist" campaign. They acknowledge autistic adults on their home page and include photos of autistic adults as well as autistic kids, while Autism Speaks uses only photos of autistic kids. Furthermore, Autism Speaks' legal rights page only talks about the autistic child's legal rights to intervention and education. There is no mention of the legal rights of autistic adults, or the need for them. By contrast, the NAS site has a section on welfare rights and another with information on employment for autistic adults.

Autism Speaks does not speak for me. They don't even seem to be interested.

Sources

Autism Speaks: www.autismspeaks.org

National Autistic Society: www.nas.org.uk

Biever, Celeste, 2008. Dispute rages over who speaks for autistic people. New Scientist; 2/2/2008, Vol. 197 Issue 2641, p9-9, 1p