Thursday, December 6, 2012

An Autism Wishlist

Dear Santa and the general public,

For Christmas, there are some things I would like for my son and the estimated 1 in 88 other people like him.

Understanding. I want for people to understand that autism doesn't mean that my son and other people like him are less. They are not unable to feel, they are not unable to function, they are not unable to think. They just do it differently than neurotypicals do. You know what? That's okay with me and it should be okay with other people, too.

Acceptance.  I want for my son to be accepted by his peers, not just his autistic peers (they parallel play just fine, thanks), but by the little boys and girls that you other neurotypicals are raising. I want for Morgan to be able to go to school and not get teased for his monotone voice, his vocal stims, other stims, or love of the demonic blue engine. I want for other autistic people to be able to gain acceptance in society by people looking at them as PEOPLE, not science experiments. Let me know if I'm wishing for the moon here.

Services. We're wasting precious time and money, I think, pushing for cures and looking for causes when we could be looking at the big picture- services. Teaching people (note that I keep putting this in italics?) on the spectrum life skills is important. Funding ABA (Applied Behavioral Analysis) is damned important, something that insurance companies all too often don't do and it's costing a lot of us somethings that we don't have- time and money.

If we're parents, we're freaking out wondering how our children are going to manage as adults in a very cruel world that will not accept our children. Because that world is not likely to change, as evidenced by some of the behaviors shown at the recent Congressional hearing on autism. Congressman Issa was good enough to call this hearing- the first in a decade, but some of his peers, some of the people who spoke, referred to autistic people as "burdens." My son is not a burden. However, paying through the nose for services and going deeply into debt for those services can be, yes.

Congressman Issa, thank you for showing that you care about us and about our people by heading that hearing and implying that there would be more in the future. There has to be. Services need to rendered. Our 1 in 88 can't wait any longer.

Just, please... Let's please, for once, get our crap together in the autism community and have a community! Please?

Warning, going into a rant now...

Why won't some of us <parents and lawmakers> listen to autistic people?! Some of us NTs listen to and applaud autistic self advocates such as Temple Grandin, Landon Bryce, Karla Fisher, etc., for what they have achieved not in spite of their autism, but because of it. When will people get that autism isn't this "burden" (borrowing a phrase here)at all times. I understand that the people I named are so called "high functioning" individuals, but what about other people that aren't? Don't their lives have value? Is there a run on life tickets if autism is caused by something in utero or by something in the environment? Does it really freaking matter?

I think what matters the most, if we are the parents of an autistic child or children, is finding the best way to help said autistic child or children through life and into adulthood. We have to love them. Not treat them like they are our cross to bear in life or society. Not treat autistic people as anything but human beings. Am I the only person getting that we are doing more to help with foreign aid than autism? Am I the only one that sees that helping Egypt's military since 1979 as compared to helping autistic people with healthcare might be wrong? Or am I the one that's wrong? 

**Also, it is incredibly offensive to call an autistic person a burden. I cannot repeat that enough. The burden lies in the way NT people think about autism.

So please, Santa, the general public, the five people reading this... please take some of this to heart. We have "stuff" we need to work on in our community.

Thank you,