This past February, my younger brother Chris, who is autistic, turned twenty-five.
When Chris and I were growing up, not many people in our neighbourhood knew about autism. Now, more people are aware of what it means to have a diagnosis, and you hear about autism quite frequently in the news. We definitely have more awareness of autism now than we did when my brother and I were growing up. But, as this blog and other organizations are pointing out today, awareness does not automatically equal acceptance. Mainstream efforts at awareness have at times presented autism and autistic people as a problem, which often serves to make non-autistic people fear, rather than accept, autism.
Thankfully, autistic people are speaking back and effectively challenging many troubling, mistaken assumptions about autism.
As a child, I had a hard time explaining autism to other people when they asked me about my brother. I didn’t feel as though I had a definition readily available to me. If I had been given one, I had forgotten it. I didn’t know how to explain autism at a scientific level, and I wasn’t sure how to list off autism characteristics.
Honestly, I wasn’t sure how to differentiate what was autism from what was my brother.
I recall someone asking me what my brother would be like if he was not autistic and I didn’t know how to respond; I had never imagined him not being autistic. When I was an adult, I was fortunate enough to be able to read a copy of Jim Sinclair’s essay, “Don’t Mourn for Us”** a helpful letter to parents of autistic children in which he clarifies that no one is trapped inside autism. In this essay, he writes, “Autism is a way of being. It is pervasive; it colours every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence”.
Reading Sinclair’s essay helped me to understand why I had so much trouble trying to differentiate autism from my brother. I think his point that autism is just a different way of being in the world is a crucial one to recognize today.
While my family and I are very thankful for greater autism awareness because it has made Christopher’s life much easier, we also believe that mistaken beliefs about the need to measure ability and intelligence in normative ways still persist.
People are dying because we haven’t achieved autism acceptance.
The refusal to vaccinate children for fear that they will become autistic has led to rising rates of the measles.
Children are given harmful ‘therapies’ like MMS/CD because some people believe that autism needs to be cured.
Autistic people face discrimination that affects their ability to receive medical care, including organ transplants, because of a system that supports the idea that autistic lives are less important than as those of their non-disabled peers.
Looking back on my childhood, I wish that I had been fortunate enough to be able to meet autistic adults and learn from them. While studying literature as an adult, I was introduced to the field of disability studies, and I was able to read many essays, poems, memoirs, and fiction by autistic adults.
I hope that autistic children and their siblings today are able to encounter important ideas about advocacy, disability rights, and acceptance that I didn’t come across until I was a bit older.
I think that is what autism acceptance is about for me – learning from autistic adults, like my brother and other autistic people, and positioning them as the experts on their own lives.
It also means rejecting the idea that autism and autistic people themselves are a problem, and looking at the barriers to full participation for autistic people in society as the real problem.
We need more recognition of autism as neurological difference, rather than deficit.
Thanks very much for reading, and please check out the other awesome posts on this blog for autism acceptance day.
Sarah Gibbons, proud sib!
** Sinclair, Jim. “Don’t Mourn for Us.” Our Voice. 1.3 (1993). Autreat. Web. 2 April 2015.
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