Why Autism Speaks Needs to Change or It Will Go the Way of the Dodo

Autism Speaks has come to a crossroads in its history. For the second time in less than five years, their president is stepping down. Their co-founder Bob Wright stepped also down as chairman of the board earlier this year though he is still on the board itself. This is a unique opportunity for them to change their leadership to be more representative of the people they are supposed to serve—those with autism.

Though only ten years old, Autism Speaks has sparked a lot of change that isn’t always for the best. Change has happened outside of its walls too, and if it doesn’t evolve to meet the new needs of the people they are supposed to represent, Autism Speaks will keep seeing its opposition grow. (Earlier this year, a Twitter campaign against them was launched. The best way to address criticism? Learn and grow from it.)

Autism Speaks started in 2005 by Bob Wright and his wife Suzanne, whose grandson was diagnosed with autism. It quickly became a leading organization in awareness and trying to find the cause and a cure for autism. People became distressed that they seemed to be trying to cure something instead of helping people who already had autism to live successful lives. People on the spectrum felt unrepresented and looked at as scorned by the community that was supposed to be advocating for them, all while having few to no representatives with autism among the leadership of Autism Speaks.

For Autism Speaks to stay relevant in the long-term and meet the needs of the people they are supposed to be advocating for, they need to make major changes.

For Autism Speaks to stay relevant in the long-term and meet the needs of the people they are supposed to be advocating for, they need to make major changes. Within the last year, they have opened up their first services to adults. But much more needs to be done. They need to stop seeing autism as a disease and saying things that make the community they are supposed to represent wonder, “Does Autism Speaks really speak for me?”

The first and most prominent step they can take is to make sure their leadership, starting with their new President, has members who are on the autism spectrum themselves, people who can shift the attitude of the organization to match those they serve. My suggestion would be Autism Speaks’ biggest critic, Ari Ne’eman. There are a couple of reasons why. First, he has been one of the people to most effectively hit on the feelings of people with autism about how Autism Speaks has affected people and can bring the right changes. Also, he is highly qualified, as he started his own successful non-profit and just ended a stint on the President’s Council for Disabilities, where he was highly respected.

Change or die, as they say. Autism speaks, here is your opportunity. Don’t waste it.

Autism Speaks needs to change or it will be torn down by the people it is supposed to be helping. This might not happen right away but as the disability rights movement moves forward and strong advocates and people with disabilities like Ari Ne’eman have more impact, the old model that Autism Speaks will become more and more of a dinosaur. Change or die, as they say. Autism speaks, here is your opportunity. Don’t waste it.
 

Jason Harris

Founder of Jason’s Connection – an online resource for those with disabilities, mental health, aging and other needs. Jason was awarded an M.S. in Cultural Foundations of Education and Advanced Certificate in Disability Studies from Syracuse University.  Jason is also a Project Coordinator and Research Associate at the Burton Blatt Institute, an international think tank for Disability Rights and Human Justice at Syracuse University.  He regularly contributes to the blog in his own series called Jason’s View and travels the country consulting and speaking about disability issues and rights. To read more from Jason Harris, read Jason's View.