Friday, November 22, 2013

This is our autism.

Usually, I don't talk about what the entire world is talking about because I really either don't care or don't have anything to add that hasn't already been said. I get tired of reading the same thing over and over. It gets to the point that if I see an article is about the topic I've had enough of, I won't read it. ...unless something in the delivery or the author really calls to me.

Today, I have something to say.

Almost 2 weeks ago, Suzanne Wright, co-founder of Autism Speaks, wrote a call to action. This started a shitstorm in the autism community. Autism Speaks is as triggering as vaccination, causation, cure, and person first language. I try to stay away from all of the above.

...well, not person first language. I will totally argue my right to say that my son is autistic. To recognize that his autism is as much a part of him as his gender and his race, and in no way should he ever be made to feel that his neurology is a disease, a birth defect (you can't see me fuming at that, Mr. Ford & Associates, but I am.), that there is something wrong with him, that he is the reason for my heartache or despair. That he is less valuable as a human being, a drain on the "normal" people, or that he needs to be eradicated. He is not an epidemic or a national health crisis. He is not missing or broken, he is not breaking up our family, he is not causing me any unnecessary stress. He is Alex. He is my son, he is wonderful, he is a pain in my ass, and he is autistic.

Oh, look at that. I already summed up my argument against, not only Suzanne Wright's post, but also against Autism Speaks. Our life is lived moment by moment, but not in despair. I do live in fear that I will lose my son, he is a wanderer, but I am not mourning what is not already lost. Alex is not lost. *yet* *knock on wood* Mentally. Alex is not lost mentally, not trapped in his own world, not absent from reality. He is right here, he can easily be "found" if you care enough to look.

I do not support Autism Speaks. I, personally, find the message they are spreading about what autism is to be disgusting and I want no part of it. I do not care if you support Autism Speaks. This is a personal choice. Look at it and decide for yourself. I will not try to convince you not to support them, you don't try to convince me to support them, and we'll call it even.

The autism that Autism Speaks portrays is NOT our autism.

The autism that many bloggers are portraying in their arguments to Suzanne Wright- the always happy, joyful, never a problem autism- is NOT our autism.

This is our autism.

All of the moments that are huge, and all of the moments that are just... normal. He's living his life just the same as you are. Moment by moment. Day by day. The clock keeps ticking, memories keep being made. Life keeps being lived.

This is our autism. 

A mixture of both worlds; the terrifying picture of a family in crisis- afraid to sleep, afraid to look away for even a moment, worried about what comes next- and the beautiful picture of a happy, smiling family living a charmed life.

I think you call that a normal life. At least... it is for us.

Yes, we need a national plan. Medical. Educational. Home. We need to make sure all of our children are getting the services they need, that our families and our schools are getting the support and education they need. That the adults are getting the services and supports that they need. Yes, we need help NOW. Real help.

But we also need a more realistic view of autistic individuals. Adults. Teenagers. Children. Toddlers. They are not the sweet little angels some make them out to be, and they are not the devils others make them out to be. Reality is somewhere in the middle.