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Thursday, August 27, 2015

Autism Speaks and Research

Chapter 3 of The Politics of Autism discusses controversies over scientific and medical research.

At The Los Angeles Times, Steven Silberman writes:
Founded in 2005 at the height of parental anxiety about vaccines, the organization has lavished most of its funding on research uncovering prenatal risk factors for autism. It has not truly committed to serving the needs of autistic people and their families.
In 2011, the organization launched an effort with the Beijing Genomics Institute to map the whole genomes of 10,000 individuals from families with two or more autistic children, at a cost of $50 million. Meanwhile, only a tiny fraction of the money raised on walks organized by Autism Speaks goes to ensuring that autistic people who have already been born will be able to live happy, healthy, secure and productive lives.
Liz Feld, president of Autism Speaks, responds:
In 2014, Autism Speaks, along with other disability groups, led the successful effort to pass the Achieving a Better Life Experience Act (ABLE), which will allow the 58 million families affected by a disability, not just autism, to set up tax-preferred savings accounts – much like 529 college-savings accounts.
While the challenges and abilities of those living with autism vary, we know that each year there are 50,000 young adults who, at 22, age out of school-based services. Parents call this “the autism cliff.” There are few job opportunities, transition supports or independent housing options for those who want and need them. So we are working to change that. Over the past two years, Autism Speaks has held 28 town halls across the country focused on housing and employment. We are also helping employers tap into the talents and abilities of adults on the spectrum with (one of the lead developers is a young man with autism), to match job seekers to employers who have open positions.