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
- how little money goes toward helping autistic people and families (4 cents on the dollar)
- how there currently are no autistic people that hold any leadership role (now that John Elder Robison has resigned)
- how their awareness campaigns promote fear, stigma, and prejudice against autistic people (2009 PSA “I Am Autism“)
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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