Friday, February 15, 2013

celebrate autism?

Tate, age 3
I just don’t get it when I hear a parent of a child with autism say they “celebrate” their autism. I have heard parents say, “I wouldn’t change anything about him.” What are they thinking? I’d change Tate in a heartbeat if I could and I have been doing everything I can since he was a toddler to minimize as many of the stereotypical behaviors of autism that I can. 

Here are my black and white thoughts…. If your child was paralyzed and you knew he’d be able to walk with a surgery or a special piece of equipment, would you say, “I accept his paralysis and will not seek help or a cure?” If your baby was born deaf, would you “celebrate” his deafness or would you seek a physician that was able to repair his ears and give him the ability to hear? There is no cure for autism but there are many ways to minimize the behaviors that will cause that child to miss out on opportunities. If you truly celebrate the child’s disability and accept it then would you be asking therapists for help, reading to find the latest research, and seeking the advice of specialists in the field of their disability? 

I met a parent many years ago that told me she had a son with autism and wouldn’t change him for anything. In the same conversation she told me about all the therapies and programs he was participating in. ???? Wait a minute? Didn’t you say, you wouldn’t change him? I’d do ANYTHING I could possibly do to give Tate a better life, a life free of autism. I’d let them take the brain from my own head and give it to him if it would mean he could live the rest of his life without autism. I do NOT celebrate autism. 

Does that mean I have less love for Tate than the parent who says they “celebrate” autism? I think not. I actually have a hard time believing that anyone really celebrates autism. I would believe they have come to ACCEPT autism, as I have, and what they celebrate is the love they have for their child. I love Tate with all my being but I HATE autism. Autism has stolen the REAL Tate from me. He will never become the person he should have been.  What? You think I have it backward? You say the Tate with autism is the impaired Tate. If he had been born blind and I found a doctor who could give him sight, would I have been wrong to do it? Would I have been a bad parent for not accepting the blindness and the “real” Tate? If a person has a life-long disability (deafness, blindness….) they learn to live with it and their parents accept it and they love that child, disabled or not. BUT, they give that child every opportunity available. They teach them sign language, how to read Braille, or anything else they need. I somehow doubt they ever celebrate the deafness or blindness. I do NOT celebrate autism. I do NOT celebrate his sensory issues and I try to help him overcome them. I do NOT celebrate his inability to communicate well and he gets lots of teaching and therapy. I do NOT celebrate his social deficits and we work on them constantly. I do NOT celebrate autism…. But I DO love Tate. Tate is a blessing to me. Autism is not a blessing for Tate or for me either. 

See this post for more about this topic: Is autism a disability?
And PLEASE, if you are an autism parent or a person with autism who feels very differently than this, read this post before you comment: What did I do to deserve this?  

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  1. Autism brings out the extremes in human attributes. No two people are more different from another than two individuals on opposite side of the Autistic spectrum. Hence, one's individual experiences with Autism should never be generalized to reflect those of everyone.

    Many people with Autism do not consider themselves disabled at all. In fact, I know a non-Autistic person who adopted Autistic problem solving strategies from his best friend (who has Asperger's), arguing that "the Autistic approach" to is often more efficient than "the non-Autistic approach". I've also met several couples with an Autistic partner who argue that they communicate more and better than most "normal" couples.

    A lot depends, however, on how much an individual is locked into themselves and well they're able to compensate for the lack of an intuitive filter when processing sensory data and/or information. While some are desperate for a cure, for others the mere notion of a cure is as offensive as the notion of curing homosexuality or left-handedness.

    Your experiences with Autism just reflect your experiences with Autism and are not representative for the entire Autistic community. If we want to support the Autistic community as a whole, it's important to recognize and respect both sides and stop fighting each other over who has the proper understanding of Autism.

    1. Usually if I hear from anyone about this particular post it is to tell me that I don't deserve to be a parent or that they are sorry for my son because I won't "accept him as he is." This is the nicest comment I've ever gotten from someone who had a differing opinion than I have on this. And you have valid points. I definitely do not represent the entire community and I do want to support it. I appreciate that you did not attack me and presented your thoughts without harmful words or degrading comments. Thank you for the response! I actually can appreciate it very much.

  2. This is my second post on your blog. I follow it obsessively. I do have a differing opinion than you on this post, but I want to have it shared. Especially with you. Tate is the person you love, and if you were to take away his autism he would have the same personality. If he had been born without autism, he would probably be a considerably different person by now. I'm a firm believer in the nurture side of the nature vs nurture argument, as I believe you are. I've read many of your posts about Sidney's first year. If Tate had been born without autism, he would have grown up in a different environment. However, he still would be fundamentally Tate. Maybe I do agree with you. I'm just a twelve year old who saw some comics on pixton and googled quirks and chaos to find more stories.