The Autism Speaks Elephant in the Room

Do five seconds of research into autism and you quickly bump into the viewpoint that Autism Speaks is a big pile of shit.

From the viewpoint of a person newly wading into the stream, it is hard to know what’s what. 

In essence, the issue with AS revolves around who exactly is AS speaking for, people with autism or people who care for people for autism. Now, there’s a lot to unpack when you question the motivations of, say, parents of children with autism. And that is to say, most parents want the best for their kids, but they may not always be told the information they need to make that decision. That is why many autism advocacy groups have leaders and staff who have autism. 

AS has been doing work to add members who have autism to the AS Board of Directors, but it seems that currently, the vast majority of those who have direct input into the strategy and direction inside the org and on the Board don’t actually have autism. 
As a longtime activist in different issue areas, I can say that is hugely problematic. I have no doubt AS was founded with the best of intentions, etc., but it’s no surprise that they have had serious problems the community that should be their top stakeholder.

On the question of Autism Speaks, people with autism are not fans. 

Autism Speaks’ budget still only allocates 3-4% for “services”. The bulk of their budget goes to marketing, salaries, and research.
In fact, if you use their Grants search tool, and select “Family services” and select “Adults”, you will see that they funded no grants that fall under these parameters.

This is where the record scratched.

How does an advocacy group spend more money to prevent a disability that is not fatal than to help support people living with the condition?!?

A little more quality time with Google and you see that AS seems to have been a major force for increased attention to diagnosing autism early and ensuring all insurance companies must pay for ABA. 

Autism is not cancer. And oh, hey, cancer research hasn’t found a cure yet either, unfortunately. So dumping billions of dollars in research money into trying to find the genetic cause so it can be eradicated is probably not the best use of that money. 

But you know what might be helpful to both people with autism and their caregivers and families?

Dumping billions of dollars into improving American health care and the public education system so that all these newly diagnosed children can get the help they need.

And the education they need. To learn at their own pace and in the manner that works best for them.

And yes, I do mean universal health care and yes, I do mean paying teachers more. There are other fairly obvious things, like decreasing class size for all kids, adding more supports for kids with a variety of conditions that make learning more difficult, adding more therapists in schools, like speech or physical therapists, and increasing art and music budgets.

I can see where some of the anti-AS folks are coming from and why many people with autism think AS has questionable priorities. 

UPDATE: And five seconds later find another anti-AS point of view from an AP.

UPDATE 2: AS is asking for input on their scientific agenda: AS SurveyMonkey on direction here. The first question I had was do they really mean it. Do they want input or just want to say they are seeking input for PR reasons?

The answer is obviously in what they do with this input, how do they share the results and what does their agenda look like in 2018? 

UPDATE 3: Another article about the need for resources for those on the spectrum. To be clear this post does not explicitly call out AS and AS has removed the word cure from its mission statement (though the replacement is not a lot better).

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