02 April 2012

I am plenty aware of autism

April 2 is Autism Awareness Day. Every day is Autism Awareness Day in my house. Mr Crackle has screamed himself hoarse in the last couple of days. It's been a bit rough.

I've always thought that people are aware, they know there's such thing as autism. But now I have kids on the spectrum, and I've become aware that people know autism like they know _____. Imperfectly at best. Comically at worst.

So here's a list of things about autism that I wish everyone was aware of:

1. Autism is different in everyone who has it. Just because you know one kid with autism, don't expect every other one to be exactly the same. For example, some autistic people like to be hugged. Some can't stand to be touched.

2. People who have Autism are people first. That is, autism affects a person, but it does not make a person.

3. Rainman. Seriously? Enough with Rainman. Furthermore, Max from Parenthood is a good representation of what one child with autism might look like. He isn't like any of my three. (See 1)

4. All autistic people do not have some special skill or talent. (See 3). Some do. But some don't. JUST LIKE EVERYONE ELSE. (See 2)

5. Parents really really hate being told that God gave this child to them for a reason. No link here. It's ubiquitous. Honestly, the cashier at the grocery store told me this last week. I told her "then God is an asshole." She doesn't like me anymore.

6. Autistic people do not live on another plane of existence. Stop saying that.

7. Autistic people are not "touched by angels". Stop saying that too.

8. Autistic people are not all super smart. (See 2). Yes, they tend to have higher than average IQs, but there are some with very low IQs, and many with average IQs. They may also have high IQs and learning disabilities.

8a. Autistic people are not "retarded". Stop saying that. In fact, stop using that word entirely. It's disrespectful and hurtful, whether you mean it that way or not.

9. Autism is not a mental disorder. It is not caused by abusive "refridgerator mothers" (always the mother's fault, you know), it is not caused by trauma. It is genetic and epigenetic. It runs in families. Or it doesn't. Sometimes the child is the first one in the family to have it. His or her children will have a higher chance of having it.

9a. Autism is a medical condition. Some say disease, some say not. But it very often affects digestion, brain function (seizures, in particular). It comes with metabolic disorders and mitochondrial dysfunction. These occur at a much higher than coincidental level in the autistic community. Whether they are the cause, the effect, or comorbid conditions is up for research and debate.

10. Autistic doesn't have a look to it. "He doesn't look autistic"? Really? Give him two minutes. Also? Stop saying that. It's not the compliment you think it is. In the same vein, "But he can talk!" is just ignorant. Lots of people with autism talk. Two of mine never shut up. I'm not sure why people try to talk us out of the diagnosis. Do they expect that we'll say, "You're right! He doesn't look autistic. I'll stop spending all that money on his therapy right now. Thanks for the heads up!"

11. I honestly don't care what caused my kids' autism. What I care about (most) is helping them navigate this world through their autism lenses. Preventing it in others is important, but those who are here and trying to cope need help too.

12. Some people want a cure. Some don't. There isn't one. There never will be. Because autism isn't one thing. I'm pretty much certain of that. (More here and here). Also? Stop asking me if I ate a lot of tuna while I was pregnant. It's annoying. There are a number of treatments that help various people with autism. Not a single one of them works for every person with autism. I don't think there's even one that works in more than 60%. That's why some people get really annoyed when asked, "Have you tried...?" Because we have. Or we're all burned out on trying anything else.

13. Autistic behaviours (stims / isms / repetitive exclusive behaviours) cannot be changed with "a little discipline".

14. Staring at a caregiver of an autistic person when the person is behaving outside of societal norms is not helpful. "Do you need help?" is usually acceptable, but take no for an answer and back off. The odd time, I've said, "Yes. Watch that the little one doesn't run off while I calm the big one down." So yes, it is okay to ask. That being said, a snappy, "NO! Get out of here!" isn't personal. It's an overwhelmed caregiver trying to make it not get worse, because sometimes a stranger's presence escalates things. Smile, say, "Gotcha!" and leave.

15. Never ever ask someone, "What's wrong with him?" That's our special little child you're talking about. Nothing is wrong with him. There are parts of his brain and body that don't work like they should. What's wrong with you? Enjoy the person for who he or she is. If that person feels like telling you about his/her autism, or the parent does, then consider yourself lucky and listen. If not, just treat them the way you'd treat anyone else. If you suspect that person has autism, maybe just be a little more considerate of sensory issues, and refrain from touching them. Don't wear perfumed anything. And moderate your volume. That's good advice for dealing with anyone, but it's especially important if you think someone has autism.

16. People with autism can and do experience empathy. Autism Speaks can go straight to hell for saying otherwise. Autism makes it more difficult to make connections between people, because people with autism don't always exhibit their empathy the way others expect. So they come off as cold or uncaring. But they are not. Some are so empathetic or empathic that they are very affected by others' moods. Also, when people with autism are engaged in their repetitive behaviours, they do it to the exclusion of all else. It's usually a way of processing or blocking out the sensory stuff that is bothering them. At that time, they won't notice others feelings. That's pretty much like the rest of us, no? If I'm sitting at the computer, reading, and I'm zoned into whatever I'm reading, I probably will not notice what's going on around me. It will be easier to get me to come back to that than it will for someone with autism.

17. Despite what all the "Myths debunked" sites say, autism is an epidemic. It's gone from 1 in 10000 30 years ago to 1 in 88 today. And it will be more. It is NOT just better diagnosis and more awareness. I would very much like to see what the rate of "Autistic Disorder" is vs. the rates of "Asperger Syndrome", and how those have changed over the years, but thanks to DSM V, that'll never happen. I suspect the AS rates are rising faster than AD, but that the AD rates are scary high.

I spent the better part of two days writing this. I read a lot of blogs and articles, and I'm mad about a lot of it, and sad about a lot of it. But the best thing I read was this:

So why do I not want to accept autism? 

Because I truly believe autism is holding my daughter captive.

Oh, she's still my daughter, no matter what.  And I still love her unconditionally, with every fiber of my being, all the more because I chose her.  If she stays this way for the rest of our lives, so be it.  And she will never hear the words, "I hate autism" cross my lips or see them on this blog.

But autism makes me mad.  And sad.  And frustrated.
Because I believe it's holding that little girl that I remember captive.  That little girl I remember is in there somewhere, buried underneath a brain that somehow got confused.  A hostage of a mind that no longer works as it used to.  

It's those feelings that spur me on and keep me fighting to win back that little girl I just can't forget.

But if that little girl never returns to us again?  I'll still keep fighting for her.  To make her life count for something.  To have her become exactly the person God intended for her to be. 

And I will love her, forever and ever, no matter what.

Do I hate autism?  No.

Do I accept autism?  No.

But that's just my story.