March 14, 2010
Wish Upon a Star
There are several reasons I decided to write a book about my autistic child (and later, due to overachieving, both of my autistic children), and to be perfectly honest, most of them are not altruistic. Sure, I want to help raise awareness for autism, and perhaps impart some gems of wisdom to newbie autistic families. Also, if I can harass everyone I’ve met since grammar school (I’m in my forties, that is a formidable amount of people now) into buying my book, the organizations I’m hoping to donate a portion of my profits to might actually be able to buy the good post-its. You know, the ones with the pretty colors and the sticky stuff that actually works.
But if I’m perfectly honest with myself, the main reason I wanted to pen my manuscript is that with the advent of the second child, I began to forget everything. I don’t mean just the memories of the extravagant fun of teaching my own autistic toddler for over a year. I mean important things, like recalling each child’s real name at least 50% of the time, or remembering to shave my legs seasonally. I figured if I exercised my brain (in theory) on a daily basis, some of my ability to recall would return.
For the most part, I was wrong.
And that’s okay, because I got something else out of trying to sit down every day and pretend I wasn’t completely intimidated by that cruel, blinking cursor. I was afforded the opportunity to really examine all factions of the autism community, and to truly take a look at what society at large was focusing on when it came to our children. I realized when you ask the average person on the street what they know about the disorder, you generally hear these responses.
Vaccines. Diet. Recovery. Jenny McCarthy. Not necessarily in that order.
Ms. McCarthy is regarded as a controversial figure within our community. Certain groups view her as an “autism angel” for bringing attention to the theory of a vaccine-autism connection, as well as biomedical interventions and recovered kids. Some elements believe her theories flout scientific evidence to the contrary. Frankly, I think a few of those groups are just pissed that she actually got the media to cover her story. For the most part I couldn’t care less about all of it. I am not a hater.
I will say this however. While it’s great that autism is practically a household word now, like vampires or health care reform, the truth is this: most of the attention is still focused on kids with supposed vaccine injuries, and those who shed their diagnosis, or at least eventually “pass” for normal. Although I’m pleased our community has become the “popular” disability, I’m afraid we’re not focusing enough on issues that pertain to the vast majority of the autistic population.
Perhaps 10-20% of people with autism fully integrate into society, and there still is no evidence accepted by mainstream science that a subgroup(s) of children exists who succumbed to the disorder due to inoculation. By the way, just so you don’t think I’m just another embittered parent of a disabled child who won’t be attending an Ivy in 2021, I do have another child at home with autism who was singing Christmas carols less than a year after he regressed. There is a good chance at least one of my progeny won’t be my permanent roommate.
Fortunately, there has been a steady rise in stories lately regarding unrecovered children with autism, and the blogosphere is now replete with posts pertaining to other issues. Perhaps I’m selfish, but I think we could continue to ramp it up a bit and pay even more attention to some of the problems that continue to plague my oldest son, and about 80% of the autism population at large. I hope we can focus on the little things, like the fact that the medical profession is finally beginning to identify children at-risk for autism as early as six months of age, but in many of the states in this country there are completely inadequate early intervention programs to tide a child over until he can enter a school program at three. It would be exceedingly special if more attention could be brought to public school districts who are actually instructing their autistic students correctly without requiring parents to take out that fifth mortgage to supply their legal aid habit, so that perhaps other districts will emulate them.
I also think it would be super fun if we could all concentrate more often on appropriate jobs for autistic adults who can handle employment, and insurance reform in every state so that parents aren’t eating Kibble by the time their autistic kids are potty-trained. Finally, it would be nice to see some extra attention paid to the housing issue, so that someday when my son is an adult he might be able to live in a safe place while I’m still savvy enough to recognize my own dementia. I have extravagant dreams.
I’ve been told, bluntly, that bylines about unrecovered children with autism are too sad for public consumption in a way that the vaccine/recovery story is not. Apparently pieces about children requiring lifetime care are just not sexy enough. What I’ve finally realized in our Octomom, Real Housewives-obsessed country is that in order to bring attention to these issues and get as much air-time as the vaccine/recovery community, we need our own celebrity.
That’s why I’m calling for Clooney.
Lest you think I have no claim to him JUST because he’s not on my list of previously stalked celebrities, I’ll have you know I have, for the most part, always been faithful to him. Sure, there have been minor dalliances in my fantasies with John Cusack and Bradley Whitford from the West Wing (you KNOW you think he’s adorable too), but for the most part, he has been my stalwart companion in REM sleep. In my dreams I’m even respectful of his lifestyle choices. There are no wedding rings, no sons bearing fabulous hair and chins. George Clooney is like that fantastic new ride at the amusement park. He’s thrilling and might make you a bit disoriented at times, but ultimately the ride is over, and it’s time to get off. There are no souvenirs.
I know he’s really busy with his charity work in Darfur, and I’m not saying he isn’t needed there. Even on my worst days with Justin and Zachary, and there have been more that a few, I’m not equating my situation with what they’re experiencing. We always manage to eat here, and to date still can afford housing. I’m not that much of a narcissist.
I do think it would be lovely if Clooney had a domestic charity too, and since autism and Africa both start with “a”, I think it’s a natural pairing. Let’s bring the sexy back to autism. Our children deserve the best, don’t you think?