There is a lot out there on the subject of "autism acceptance". There is even something called the Autism Acceptance Project. And NPR did this story on autism acceptance. I think these types of sites and initiatives are great. I am all for autism acceptance, although maybe not in the way some people mean. What does autism acceptance mean? That is the tricky question.
When I first heard the term, I thought it referred to accepting the fact that your child (or you) have autism or are on the autism spectrum. There are certainly a lot of people in denial, as is common with potentially devastating information. It is a form of self-preservation. For me, personally, this has been quite tricky since Alex is one of those kids who gets a different diagnosis every time we go somewhere for an opinion or evaluation. He has had 3 formal evals by qualified professionals. One diagnosed high functioning autism (possibly Asperger's), one diagnosed ADHD with possible Sensory Processing Disorder (confirmed by an OT) and one diagnosed ADHD with Expressive Language Disorder and sensory seeking behaviors noted. So...clearly "something" going on but not so clear exactly "what". So....I don't want to go around saying my child is autistic if he is not but I also recognize he has many "spectrummy" qualities - he is on the edge of the spectrum somewhere, no doubt. I accept that and even go so far to say he is "on the spectrum" because I think he is. Autism acceptance, right?
Actually, autism acceptance usually refers to accepting autism as a "difference", often referred to as "neurodiversity". Many people think autism (especially Asperger's) should not be thought of as a disorder. Temple Grandin, a prominent person with autism has said she thinks autism is a gift. She thinks she would not have accomplished what she has without it. She is very likely right. I think she is incredible and I'm glad young people with ASDs have her to look up to. No doubt she has postively influenced many parents and children affected by autism spectrum disorders. However, I just don't know how I feel about autism being a gift. I am glad she feels that way and she may even be right. I will admit I wish my son didn't have this "gift". It is one I wish we could return.
What does autism acceptance mean to me? To me, personally, it means accepting my son's limitations and gifts, the same as I would with my 3 NT children. We all have our strengths and weaknesses. One of my most important jobs as a mother is to nurture their gifts and strengths, help them develop areas that need work, and accept that they are not perfect. So, while I accept that Alex has limitations that my other kids don't have, I also believe that some of these limitations are due to a DISORDER. Because I do believe that autism, Asperger's, etc are disorders. Hence the term autism spectrum DISORDER. I don't think it is merely a different way of thinking or being. I really believe there is something "wrong". And if I had the opportunity to take it away, I would. I think Alex would still be Alex without the ASD. I don't think it defines who he is. I respect parents who claim they would not change a thing and believe that the ASD makes their child who they are. It is valid point of view. I just am not there. If I could take away my son's difficulties with making friends, complex motor skills, language, and sensory integration, believe me I would in a second. Because I think life is going to be harder for him than it is for my other kids - heck, it already is. Who wants that for their kid? Who wants to watch their kid struggle? My son is a very happy boy. I hope and pray that he continues to be.
Parents of children with other disorders don't go around talking about acceptance. As far as I know there isn't discussion of acceptance of other disorders as simply a variation of normal. Why is it the case with autism? I know most of the discussion centers around high functioning individuals and not children who are severely affected, but even mildly affected kids can have serious problems functioning in the world. And most kids with ASD are mildly/moderately affected. The reason these discussions bother me is if HFA/Asperger's are accepted as variations of normal, there is no incentive for research into a cure or REAL treatment for autism. And this research is woefully underfunded now.
Then, of course, there is the other end of the spectrum (pun intended) - those parents who literally risk their children's life trying to "cure" autism. I will leave that discussion for another post.
Thoughts on Newtown
4 years ago