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Friday, November 15, 2013

More on the Autism Speaks Controversy

At Forbes, Emily Willingham weighs in on the Autism Speaks controversy:
Do families with autistic children need a smoother road to services and resources? Of course. Families with children with any complex condition need that, and so do autistic adults. Do we need better supports in school, better infrastructure for our children as they grow? Yes. Of course. Do we have to diminish and demean and dehumanize our children to get people to listen to us when we talk about these needs? I emphatically think not, and many autistic people and parents of autistic children agree, based on the reaction in the comments on Wright’s post [and elsewhere, including from longtime supporters].

It’s odd that Wright would argue so strongly for supports given that, according to the Autistic Self Advocacy Network [their statement on Autism Speaks is here], her own organization in 2010 devoted only 4% of its budget to “Family service” grants. And Autism Speaks’ track record on inclusion of the very people it claims to represent was limited, at best, and now has returned to nonexistent.
At the Jewish Journal of Greater Los Angeles, Michelle K. Wolf writes:
Her relentless focus on the burdens of raising a child with a developmental disability is really scary to me—after all, if having a family member with severe special needs is such a tragedy, why not remove those kids/teens from their families and communities? Wouldn’t life be easier all the way around? That was the conventional thinking for too long in this country, resulting in such horrors as Willowbook in New York, and unfortunately is still the norm in many countries around the world.

One parent blogger, Shannon Des Roches Rosa, who also a co-founder and senior editor at Thinking Person's Guide to Autism felt that Wright’s letter was
“ham-fisted” (strikes a great chord to a Jewish blogger) and outraged “at her using our lives to yank John Q. Public's pity chains.”
And from an adult with autism:
“We are teachers, psychologists, parents, somebody's children, researchers, scientists, artists, musicians and many, many more. There are many roles for us in the organizations which claim to represent us and work towards improving supports for us… Please remember: Nothing about us, without us.”
In an interesting historical side note, on Nov. 15th, the White House is hosting an observance of the 50th Anniversary of the Developmental Disabilities Assistance and Bill of Rights Act, signed into law by President Kennedy in 1963. Originally called “The Mental Retardation Construction and Facilities Act of 1963”; this was the first federal law to promote community-based health care and provided federal funding for such facilities.
What families and adults with autism and other developmental disabilities need isn’t pity. We need an update of that 1963 law to ensure adequate financial assistance for families, with more job opportunities and affordable housing options for adults . Overall, we need a system that is built to help, not hinder, access to needed services and support.