Autism Speaks does not deserve its negative reputation


My brother Zach has autism. Over the past few years, he has aged out of school services and is now receiving what are called “adult services” by the state of Vermont. This has come with mixed success and the realization that there really aren’t any “adult services.” We are working to find a permanent living situation for Zach before my parents become too old to take care of him. Between meetings with the state, program research, finding money for services, doctor’s appointments and making sure someone is supervising Zach, my family is exhausted.

Zach was diagnosed in a time before Autism Speaks. The awareness campaigns that made most people in the U.S. aware of autism hadn’t started — my mom hadn’t even heard the word before Zach was diagnosed. Autism Speaks provided our family with much needed visibility. Suddenly, my parents had access to all of the information about what was going on with Zach, and, more importantly, information on how they could help him. The specialist we found when Zach was a child that walked us through our treatment options? Autism Speaks. The reason we found a program that suited his needs when he turned 18? Autism Speaks. The grant that gave Zach an iPad, allowing him to better communicate with the world? Autism Speaks. The group that has been the only consistent source of information and support for my family for almost 20 years? Autism Speaks.

I have found myself not discussing my family with others because they often take offense to my support of Autism Speaks. Many people’s criticisms of the organization are based on outdated facts that have since changed. In its early years, when the Wright family — founders of Autism Speaks — stated that they wanted to “cure” autism, they mainly wanted to “cure” the conditions that are often comorbid with autism. The word “cure” has since been removed from their mission statement, and they have shifted their goals to focus on global health services and world- wide acceptance for people with autism. The genetic research programs they have worked on, treating the gastrointestinal issues and seizure disorders that many people with autism have, are not an attempt to “cure” autism. They have also promoted the idea of “early intervention,” or recognizing symptoms of au- tism at a very young age and assisting children early on, which allows them better communication skills as adults.

Although autism self-advocacy groups, like the Autistic Self Advocacy Network, are important and absolutely necessary, not every person with autism can advocate for themselves. These organizations represent a subgroup — not everyone on the spectrum, like they often claim to. Zach is never going to be able to communicate his feelings about his autistic identity or advocate for himself. We need to make sure that people like Zach aren’t left behind. We need to advocate for better adult services — programs that lead to real paying jobs, assisted living situations designed specially for people with autism and legal assistance so that the school systems, employers and law enforcement are held accountable when they act unjustly towards people with autism. Self-advocacy groups don’t focus on those issues, but Autism Speaks does.

Autism Speaks isn’t perfect; in fact, they have made signi cant mistakes. But Autism Speaks has always been there for my family. They are a source of accurate scientific information, a community focusing on the excellence of individuals with autism and have been researching treatments that have improved Zach’s quality of life. So if supporting Autism Speaks makes me a bad person, then I’m a jerk.