My Thoughts on the Autism Speaks Controversy


My Thoughts on the Autism Speaks Controversy

When I started to learn about autism, one thing that came up constantly in my searches was the charity, Autism Speaks. Controversy surrounds what I always thought was a wholesome brand. Many people take great issue with the largest autism charity in North America, due to the problematic way they have approached the conversation around an ASD diagnosis in the past.

While I don’t disagree that they have made some mistakes, I think it’s time we accept and move on.

I’ll be honest. Initially, I sided with the people who were against Autism Speaks. I would agree that their messaging was problematic. In the past, they have painted a really bad picture of life with an autism diagnosis. Their message was focused on everyone but the autistic individual. It created a sense that there is little hope for these families and that autism was a tragedy.

But please, show me a disability that doesn’t have a sordid past. Show me one disability in the history of modern healthcare that does not have its issues and missteps? It’s impossible. We have gnored, shut down, and diminished the disabled community since the beginning of time. While this thought disgusts me, I also can’t ignore that it’s true.

We have come so far, but we also have far to go.

Since Autism Speaks was founded, science and medicine has changed dramatically. The advancements made in technology have changed the lives of all North Americans. Diagnostic criteria, diagnosis rates, therapies all look much different. A lot of what we know has stemmed from the research funded by this organization. The families who demanded more for their children and the individuals who had the ability to self-advocate and educate on what autism actually means.

I do appreciate those who are willing to stand up to larger organizations like Autism Speaks. Everyone should be held accountable for their actions. But if your argument stems from things that happened 8, 10, 15 years ago? I just can’t get on board with it.

Since my son’s diagnosis, our family has received care and participated in research studies at The Glenrose Hospital. Our experiences there have been nothing short of amazing. The staff embrace families, and support them wholly. Their intention is certainly not to eradicate autism or treat it as if it is a disease. At local conferences I’ve attended, autistic voices are encouraged to be heard. From where I stand the intention is good and the curiosity is what drives the successes in research.

In my opinion of Autism Speaks — they have evolved.

They have grown. What we all know about autism has changed. It’s very likely that we have all changed our thoughts, opinions, ideals over the last decade or more. They deserve some grace for their past, and I think it’s time we look at them from a more neutral stance.

I will be supporting Autism Speaks by participating in their fundraisers as a small token of my appreciation for the positive impact they have had on my family, community, and the knowledge we have about autism today. If you are not at the point of supporting this charity, I respect your position. But the next time you think about Autism Speaks, please try to consider some of the good they have done as well.

— Kathy




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