Autism Speaks is a high profile US charity. Their website describes their mission as “funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families”. So why do I have a problem with them? Allow me to explain…

#1 Negative Image of Autism

Autism Speaks consistently describes autism as a disease, an affliction, a burden. Autism is not a disease, it is a developmental disorder and is life-long. We don’t “recover” from it, it doesn’t get “cured”, it doesn’t magically disappear when we reach adulthood. And yet many of us, with appropriate support, live fulfilling lives. It’s not always easy and we have good and bad days — just like everybody else!

Autism Speaks focus on the difficulties some parents face in raising autistic children. They dehumanize and objectify those children, portraying them as pitiful lost souls and destroyers of families in a cynical attempt to evoke sympathy and elicit donations. They use scare tactics, leading vulnerable parents into the belief that an autistic child will ruin their lives. They do not demonstrate any compassion towards those children or treat them as people with feelings and rights.

#2 Autism Disappears After Childhood

Autism Speaks concentrates exclusively on autistic children, ignoring the fact that these children will grow into autistic adults: it is as if we disappear once we reach maturity. Unlike many other autism charities and organizations, they do nothing to improve the lives of autistic adults by supporting and advocating.

#3 They Don’t Listen To Autistic People

I find it ironic that a charity called Autism Speaks does not appear to recognize that many autistic people are able to speak for themselves, or at least communicate in some way. They seem to be so busy sending out their own message that they fail to listen when autistic people call them out on one point or another. It feels condescending, patronizing; as if they believe that they know better than us. As if what we have to say for ourselves could not possible be important or worthy of attention. And, since John Elder Robison resigned from his roles at Autism Speaks because he could not reconcile his values with theirs, there is not a single autistic person represented in the running of the charity.

#4 They Don’t Speak For Us

How many charities — for special needs education, for cancer research, for Alzheimer’s — can you think of where the majority of the people they claim to target disagree with their principles and direction? Because that is the case with Autism Speaks.

Don’t just take my word for it. Many autistic activists, advocates and allies are sending the same message: Autism Speaks does not speak for us. That is why we are calling for a boycott. I hope you will join us.