Autism & Me: Why I’m Not an Expert

April is Autism Awareness month, so since next week (this week by the time this is posting) is Spring Break I figured I’d start the month off early by writing a week of entries on autism.

Recently I was asked why I write SF/F/H when I could be writing about autism and help other people struggling with it. Well, there are three answers.

First, I’m not an expert on autism. I’m not a doctor, or a therapist, or a behavorialist. Some parents are inspired by their children to further their education and reach out to help other special needs kids. Currently that’s not feasible for me (though I do have ideas of what I want to do in the next 5-10 years if there’s no movement on my writing).

The only thing I am an expert on is my children. Yes, one of them is autistic, and that does give me some experience and certainly an opinion or two on the challenges that face people on the spectrum. But no matter how hard I try I can’t get into my son’s head, or into the heads of the other parents/people out there who deal with the challenge of autism.

Which brings me to point two, we are very lucky. My son is high functioning. He is determined (and stubborn). He scores above average in intelligence tests and he has yet to hit any sort of ceiling on his ability. He doesn’t suffer from any of the other problems that go hand in hand with autism, like muscular problems and OCD. We are very very lucky, and it would be irresponsible of me to think that our autism experince is typical and hold other people and other families to our standards.

In fact that sort of assumption is why Jenny McCarthy is somewhat disrespected by many in the autism community for the slant (as if autism has a simple cure, and further as if everyone has her income level behind them to care for their children) she approaches the issue from.

Finally, the lack of information and research with autism (what causes it, how to help) has risen to some really suspicious “medicine”. Chelation therapy (a detoxification that sometimes seems to help, until the drugs are no longer being taken, oh yes, and where the clinic most heavily pushing the therapy own the patent on the main drug used), GFSF diets (with really expensive foods, again most preached about by the people who stand to make money off it), distraction in the form of who to blame (vaccines? the government? genetics? the environment?). Many people become so wrapped up in blame and a cure that I feel that their children suffer.

What would it do to you if you grew up being told you were broken, but this drug, or this diet, or this research would “fix” you?

This is not something I want to contribute to. I don’t want to put another book on how to handle autism out there, draining families’ resources and causing more distraction and dissent.

My posts about autism are meant to be free. They are not a how to, they are a voice of support. You aren’t alone. There are lots of us out here, who aren’t experts or doctors or scientists. We’re just parents, siblings, caretakers and loved ones. You shouldn’t have to pay $19.95 to have me tell you, you’re not alone.