Tomorrow Is Too Long to Wait for Inclusion

The Best Argument Against Autism Speaks: A Special Educator’s Perspective


I typically do not like to write about things I am against. 

But when an organization like Autism Speaks continually misses opportunities to do the right thing and listen to the people they are supposedly advocating for…it saddens me. And if you are a special educator…it should sadden you to.

Please don’t misunderstand me. I do not wish to discount the real challenges that families face when they have autistic children. I have seen first hand how difficult it can be for my students and students’ families and I wish dearly that we could give them the support they so desperately need and deserve. But this is not the subject of this post.

As a special education teacher, my job (as I see it) is to 1) give my students access to the general education curriculum using modifications and accommodations 2) along with the Individualized Education Program (IEP) team, create an individualized plan for my students to learn and grow in independence and self-determination 3) advocate for those students who do not have a voice or for who no one believes in…because if no one does…who else will?

So why are so many people mad at Autism Speaks right now? That is an excellent question. The answer is really the best argument against this organization.

This is a statement from their “About Us” page:

Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Their longtime friend Bernie Marcus donated $25 million to help financially launch the organization. Since then, Autism Speaks has grown into the world’s leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. We are proud of what we’ve been able to accomplish and look forward to continued successes in the years ahead.

Simple right? Their aims are 1) to find the cause of autism 2) to prevent autism 3)  to treat autism 4) to cure autism 5) to increase awareness  6) to advocate for people with autism and their families.

So what is the big deal? In following through with this agenda they have forgotten to do what their slogan implores them to do.

It’s time to listen.

Numerous autistic adults have spoken out against Autism Speaks about

As of this writing, there have been no changes to their policy and with the tone of co-founder Suzanne Wright’s “Call to Action” on the eve of their national policy meeting in Washington D.C., I don’t suspect it will change anytime soon. Here is an excerpt from John Elder Robison’s post about his resignation from Autism Speaks’ Science and Treatment Board.

No one says the Cancer Society does not speak for them. No one describes the Cystic Fibrosis Foundation as an evil organization. All that and more is said of Autism Speaks every day. I’ve tried to be a voice of moderation but it hasn’t worked. Too many of the views expressed by the organization are not my own; indeed I hold very different points of view.

Autism Speaks still has a base of support among families of young children, but it has very little support from parents of older kids, or autistic adults. And the fact is, that is the majority of the autistic population. I’ve made that point in the past; apparently to no avail. I’ve suggested things the organization could do to garner support from those groups, but those suggestions have been ignored.

There you have it. If you ran an organization that ignored the voice of people who you are supposed to be advocating for…who would you really be speaking for?

Sometimes I feel like the people at Autism Speaks have the same attitude as some educators who opine about how life would be so much better if those pesky “high-maintenance” parents would just go away. Well…those pesky autistic activists are not going away…and since it is my job to speak up for those who have no voice…I am not either.

Thanks for your time and attention.

If you would like more information about organizations that are helpful to autistic people, please check out: Autistic Self-Advocacy Network, Autism Network International, and Autism Society of America. (edited: Autism National Committee)

Short Disclaimer: I have friends and co-workers who support Autism Speaks and this post is not intended to single anyone out. If you don’t believe what I have written about Autism Speaks you might want to read this post from a previous supporter (a parent with a daughter with autism). In my opinion…it is a must read. 

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Tim Villegas

Founder and Curator-At-Large at Think Inclusive
Tim Villegas has worked in the field of special education and with people with disabilities for over ten years. Tim has turned his passion for blogging and promoting ideas about inclusive schools and communities into his own website, He believes that we can create a bridge between educators, parents, and advocates (including self-advocates) to promote ideas, innovation and inspiration to change our world to be more accepting and value each and every human being. Tim lives with his fetching wife and three adorable children in Marietta, GA.
  • R.J.

    Unfortunately, As a special educator myself and an advocate for education amongst autistic youth, I experienced their unprofessionalism first hand. The article is very sad but very true.

    • Tim Villegas

      Truth be told…I have not had much interaction with AS. The Marcus Autism Center is close to where I live and I have heard mixed reviews about them from parents. Marcus was a big financial supporter of AS at the beginning. It just makes me question why they have repeatedly left autistics out of the conversation.

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  • Tim, I’d like to add this website to your list:

    • Tim Villegas

      Sure Marliee. I’ll edit it in. Thanks.

  • HI-
    I was really saddened by what I learned about Autism Speaks. 4 cents on the dollar going to families and failing to be a voice for people with autism (as their name would suggest) is just too much.

    My son is blind and not autistic but blind people often put up with the same defeatist and negative attitudes about blindness. The human experience is varied and we all have challenges, some greater than others, but we all have worth.

    • Tim Villegas


      Absolutely. The concept behind diversity and inclusion is that we all have value as human beings. You would think that an organization that supposedly helps autistic people would listen to what they had to say. Thanks for your comment.

  • liz

    Agreed, Tim. Makes me so sad.

    • Tim Villegas

      Thanks for your comment Liz. Appreciate it.


  • Leah

    Thanks for the information. I have copied and pasted your link in the many parent groups I attend and facilitate. This is frustrating and disturbing.

    • Tim Villegas

      Thanks for sharing the post Leah! I am happy it has reached a wide audience.


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  • Jodi


    That was a very good article. I don’t know if you have read anything, or wrote, anything about Autism Speaks financials, but if you go to their website and pull up their tax documents, it speaks volumes about what kind of organization Autism Speaks is. About 90% of their income goes towards overhead, which includes advertisements and salaries. Susanne Wright alone makes about a $600K salary from Autism Speaks.

    • Tim Villegas

      I have not done an in-depth study of AS’s financials. It will be worth looking up though…thanks for the insight.


  • zan Thornton

    I was convinced when the parady was shown. How can we support her parady and keep it going? We oppose Autism Speaks at many CIL. What are your supporters next step? What can we do to support ending austism speaks (not for me or my sisters and bros)?

    • Tim Villegas


      I think we need to tell people about how AS shuts out autistics. I have yet to read a purely positive review of AS from a person who has autism. In fact…if you know of any (this is addressed to anyone) I would love to read it. Please send it my way.


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