It seems like this day has been taken over by a large fundraising, research organization. All of the fundraising, Light It Up Blue initiative, advertising etc. makes it seems like Autism Awareness Day should be called Autism Speaks Day.Over the past year or so, I have been pulling away from the whole Autism Speaks thing. I have learned a lot by reading blogs of other autistics and supportive advocates. I have always accepted my autism but haven’t completely understood everything about how it affects me. I still don’t understand it all.
I do not want a cure for my autism. I would never have an amniocentesis to see if my fetus had autism either (whenever that test is developed or hopefully it won’t be!). Just as I never did when I was pregnant with my daughter to check for Down Syndrome. If our child was born with a disability, so be it.It turns out that our daughter was born with a disability-autism, the same as me and my husband. When she was diagnosed, it was a relief to know why she is the way she is. It’s not a bad thing, it just is. Sometimes I ask her why she has done, said, or thought something, and she will say “because I’m Micah”. She does things the way she does things just as I do things the way I do them. It’s not bad just different. There are times when she or I want to do things the same way as other people but other times we do it our way whether other people think it is right or not. We have always encouraged our daughter to be herself.
Accepting her as she is does not mean not helping her. She has had a lot of occupational therapy, mainly to help with sensory integration. She also has other therapies to teach her to how to ask for help or other things but they were done in a fun way through play and not sitting still at a table with her hands still. She used to fall off her chair regularly because she was so squirmy and couldn’t just sit. I think it was too much just to sit and eat dinner. As she has gotten older she is more settled and we allow her to read while she eats so now she just sits and doesn’t fall off the chair anymore. Some people think it is rude to read at the table but that is what she needs.The therapies we have done do not change who our daughter is but help to give her the skills that she can use to get her needs met whether those needs are written down or spoken. We have written in her IEP that she is not to be forced to give eye contact. If she is comfortable with you, then she is able look at you depending on what else is happening. I am the same way.
Again, I wouldn’t take a cure for my autism but I do need support in the areas I struggle with. The problem is that those supports don’t really exist except for a few places where you have to pay a lot of money, especially if you need long term support with different things. We are not rich. We get little bits of help every now and then but we put most of our resources into our daughter so she can grow up to be as independent and happy as she can be.A very large autism organization gets loads of fundraising dollars especially at this time of year but most of the money goes to research on how to prevent and cure autism so there won’t be autistic “burdens” anymore. If they really want to help families, they could spend the funds on support for the autistic person in the ways that the person needs it.
Many people are “aware” of autism. What is needed now is acceptance that autistics exist and always will; that we need jobs, healthcare, respect, love, happiness, and understanding.