Letter to the editor: In defense of Autism Speaks

Jeffrey Zide’s opinion piece on Autism Speaks presents a false impression of the nation’s largest autism science and advocacy organization.

Zide  decries supposedly “shady finance” but ignores recent data which show that 72 cents of every dollar raised by Autism Speaks in 2011 went to fund its programs. This exceeds the Better Business Bureau’s  standard for charity accountability .

Zide criticizes the volunteer involvement of the families of people with autism and quotes Prof. Jacob Hale’s comment that parents’ and grandparents’ “claim that they speak for (their autistic children and grandchildren) is offensive.” This view denies reality. Parents are legally empowered to speak for their minor children and many, like my wife and me, are the court-appointed conservators of their adult children. Who will advocate for the increasing number of individuals on the autism spectrum if not those closest to them? As the father of a non-verbal son with autism, this section was particularly disturbing to me. To see your hopes for your child dashed by limitations imposed by autism  is disappointing. Personally, despite his autism, the day my son was born was and remains the happiest day of my life. When we received the diagnosis, my wife and I instinctively decided to do what we could to help our son achieve a productive and fulfilling life.

Some parents have taken the news harder and some marriages have been rocked by stress and disappointment. While our outlooks and approaches may differ, I would never deny the validity of their feelings. To criticize those parents – particularly from the comfort and luxury of eloquence and high function – is unseemly and disrespectful.

Zide suggests that Autism Speaks is focusing on vaccine-related research.  Autism Speaks has always taken a “multiple line of inquiry” approach to autism research. It funds top researchers in the United States and around the world without limitation to “pet theories” of causation. Autism Speaks has committed over $173 million to broad based  research and has leveraged more than $300 million in additional funding. Some of the research has addressed the concern that childhood vaccinations may cause autism; these studies have not found a link between vaccines and autism.

Some have criticized Autism Speaks for conducting too much research on vaccines. Others have criticized Autism Speaks for conducting only a limited amount of research on the issue. Autism Speaks strongly encourages parents to have their children vaccinated to protect them against serious diseases.

Zide’s claim that  Autism Speaks does not engage in social justice or advocacy/activism efforts is incorrect. I’ve been personally involved in legislative advocacy of  laws providing government support for the needs of autistic individuals. Autism Speaks was a leader in the drive for Congressional passage of the Combating Autism Act, is currently spearheading a state-by-state initiative for insurance reform requiring coverage of autism treatments, and is a proponent of the ABLE Act, which would legalize tax-advantaged savings accounts to help assure a secure future for people with disabilities.
Autism Speaks has initiated programs to help improve people’s experience with autism.  These include a guide to establishing a treatment program for the newly diagnosed child; Community Service Grants to organizations serving the autism community; and  The Transition Tool Kit, to help people with autism achieve  a meaningful and productive adult life.

Jeffrey Zide doesn’t see the value in all this, but fortunately many others do. Just last month more than 30,000 people turned out for the Los Angeles Walk Now for Autism Speaks event and raised over $1.6 million to support Autism Speaks’ important work.

-Stanley Landes
Los Angeles Chapter Advocacy Chair, Autism Speaks and CSUN professor of journalism.