What's (Still) Wrong With Autism Speaks


"It is tempting, if the only tool you have is a hammer, to treat everything as if it were a nail."  Abraham Maslow (Click here to see larger.)

 

 

 

The last time I really wrote about Autism Speaks, it was to acknowledge that "Autism Every Day" had been made private on YouTube, and that the way I write about the organization needs to change since their most negative messages about autistic people are, at least for the moment, largely a thing of the past.

Autism Speaks has greatly improved in other ways, as well.  Their last round of funding included four grants to study adolescents and adults with autism, the best evidence yet that John Elder Robison, the only autistic person to ever play a significant role in the organization's decision making, is, in fact, having some influence on where money is going. They continue to include the voices and perspectives of autistic people more frequently in their promotional materials as well. 

But that does not mean that I think Autism Speaks is a good idea or a helpful force in the lives of autistic people.  I still think you should give your money and time elsewhere, and that you should try to avoid the media they produce. 

And, again, this is not because Autism Speaks is run by bad people.  It is run by people who mean well, but have a few very wrong ideas, and those ideas do make everything that they do  a little dangerous.  I want to go through these ideas and explain to you why I think they are wrong, and how they hurt Autism Speaks.

 

1. Autism is a disease.

It isn't.  It's a neurological difference.  It is entirely possible, even likely, that there are diseases that result in symptoms similar to autism, but autism itself is a difference in how the brain grows and makes connections.  It's not a sickness.  You don't need medicine for it, although you may need medication to help negotiate the difference between the internal world that your unique brain has created and the external world of neurotypical expectations and harsh sensations.

But Autism Speaks is far too quick to suggest medication, I think because it is the only tool doctors like Geraldine Dawson, their chief science officer, really feel comfortable using.  Note how readily she suggests it in a January 5 chat session held on Facebook:

Desi:  I am a concerned sister my brother has been displaying very defiant attitude about going to school and doing his routinely schedule. He also has this tendency to lash out and talk to his hands naming them Oobi and Uma… He does very forcefully and it happens about 53 times an hour. His school brought this attention to us this summer 2011. His teachers have noticed he is doing this more and more which deters and delays the time to complete a task. Would you happen to know what this is?

Hi Desi, This is Dr. Dawson. The behaviors you are describing are common in children with autism. Your brother is having trouble knowing how to express his feelings in an appropriate manner. When he gets frustrated, he likely doesn’t know how to express his frustration using words, and therefore he lashes out. Repetitive behaviors are also common. Both the lashing out and repetitive behaviors can helped through behavioral interventions and sometimes with medicine. To find resources, take a look at Autism Speaks resources library.

At least she says "sometimes," but it is just not ethical to tell someone's sister that maybe he should be on medication because he likes to play with his hands.

In particular, Autism Speaks has been inappropriately enthusiastic about the use of risperidone to treat behaviors associate with autism-- Dr. Joe Horrigan suggested that a parent consider putting her child on it in the same chat.  And here's the thing-- the drug works fairly well on treating repetitive behaviors, but those are rarely problematic enough to merit its horrific side effects (breast growth in adolescent boys, neurological tremors that never stop, even if you stop taking the drug).  It is most frequently prescribed because of aggressive behavior, but is is less effective for that than placebos are. 

But Peter Bell, who is probably the most influential single person in Autism Speaks today, was a marketing executive at Johnson and Johnson, the company which created risperidone and marketed in under the name Risperdal.  I don't think Bell is unethically promoting a drug that he knows to be ineffective, but I do think he believes the half-truths about it he was once hired to sell.  Drugs are the only tool he knows. 

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2. Biomedical research is the most promising way to find effective treatments for autism.

Autism Speaks, and everyone else who funds autism research in a significant way, has put the bulk of their money into studying the physical causes and processes of autism.  But the only reliably effective treatments for autism devised so far have been educational.  We could reach more kids, and do so more reliably, if we devoted half the funds Autism Speaks devotes to the tug-of-war between environment and genetics to studying how to teach kids.

 

3.  Autism is a series of deficits.

Again, autism is a difference in how the brain grows and makes connections.  That difference causes both challenges and strengths.  One of the problems with seeing autism as a disease is that it obscures these strengths, and does not put adequate resources into helping people learn how to access them.

Too often, Autism Speaks sends the message that it would be ideal for an autistic person to be neurotypical, or, at least, to behave as much like neurotypical people as possible.  But that's the wrong goal.  We can only ever be very poor imitations of neurotypicals.  We need to learn to be happily, successfully, independently autistic.  We need strategies and supports to build wonderful, unusual lives. We need the assumption that we must be less because we are different to be stamped out wherever it appears.  We need the people who advocate for us to see the things that make autistic people an indispensable part of our world.

 

4. Money and opinion can influence science.

You always have to remember that Autism Speaks was started by TV people-- this is one of the reasons they have been so successful in dominating the media.  But TV people have weird, and sometimes dangerous ideas about science.  Before it became part of Autism Speaks, Peter Bell worked for Cure Autism Now, an organization originally funded by Hollywood producer Jon Shestack, who started it because he believed movie money could hurry science:

“I work in the movie business,” Shestack says. “I know you can hurry anything. You put more guys on the job, you spend more money. You just can’t do it for free.”

That attitude-- that you can get the result you want just by spending more-- is endemic in both television and the movies.  And it has been part of the culture of Autism Speaks since founder and former NBC executive Bob Wright hired former NBC executive Alison Singer to be its first employee.

In television, you win by getting people's attention and getting them to agree with you.  In science, you win by being right.  When you start off with a wrong idea, like autism is a disease, it ultimately does not matter that much how much money you spend.  The most expensive car will never get you to the right destination if you drive it down the wrong road.

 

5.  Neurotypical people should decide what to do about autistic people.

In part because it was started by people who were most concerned about children and in part because it was started by family members of people whose autism disables their communication in significant ways, Autism Speaks has yet to accept that autistic people are better than neurotypical people at understanding autism. 

We need programs designed and led by autistic people.  We need to fund research done by us and focused on our needs.  Neurotypical people, even family members, can only see autism from the outside.  That's just not good enough.  We are the ultimate experts on ourselves.