The Truth About Autism

We recently began watching a TV series in which two parents learn that their son is on the Autistic Spectrum. They freak out. They cry a lot. They act like assholes.

Over the course of several episodes, they consult a specialist because he’s the best, then challenge him…like assholes…when they hear the news that their son is, indeed, autistic. They push their way into a school for kids on the spectrum and berate the director when she tells them the school simply has no openings…perhaps because the school wants to make sure it can meet the needs of the kids who are already enrolled. They eventually get their way, and their kid jumps the line…because his parents are assholes.

They hire a therapeutic behavioralist and immediately challenge her methods, then complain about how much her services cost, but ultimately everyone is happy because now the wife can stop faking her orgasms. Yes. They’re assholes.

It’s a TV show. It’s targeted at people who are 20 years younger than I am. The life lessons it seeks to teach are ones I learned a long time ago, and I can spot most of the conflict coming thirty seconds after the theme music has ended. So, it’s not my thing, and, also, it’s a TV show. Some of it is probably pretty accurate. Some of it is probably relatable. But most of the parents are assholes.

When we found out Allie was autistic, we freaked out, too. There was a whole year where I thought I could “fix” her if only I could combine the perfect combination of therapy, interventions, equipment and a rigorous home program.

This was in the 90’s, mind you. Before Autism Speaks, before the blue puzzle piece logo, before most people knew anything. There was almost nothing in the way of support, and for five years I went from doctor to doctor practically screaming, “tell me what’s wrong!” only to be told there was nothing wrong.

They were wrong.

Allie was diagnosed at 5. It took us 4 years to get an appointment with the only autism specialist in Philadelphia, and during those 4 years we tried to figure it out for ourselves. By the time we got in to see the specialist, she basically told us that she had nothing to offer us other than her seal of approval for the team we had cobbled together for Allie – the occupational therapists and speech therapists, the educators at the school we couldn’t afford but sent Allie to anyway, and the medical specialists (neurology, psychiatry), the behavioral specialist and the TSS and wraparound service people, the meds, the homemade equipment to address sensory integration issues. It was pretty much the best we could do.

Allie is now almost 25. It has already been a long road. She’s been so fortunate to have had outstanding, tireless advocates in the form of teachers and therapists and our dear friends who have loved her and supported her. She had 4 years at a specialized sleepaway camp for kids on the spectrum, and she spent a difficult year in a remote corner of West Virginia with virtually zero support from the faculty at her equine studies program, buoyed only by the amazing young woman we hired who became her champion.

Allie now works at a therapeutic equine program that has embraced her as part of their family, and where she knows and loves each horse as a dear friend. She works part time at a movie theatre. She’s in a book club. She’s the adoring owner of a ginger Maine Coon cat who is almost as beautiful as she is. She’s pretty amazing.

Of course no one rejoices when they are told their child will almost certainly struggle every day of their life, and no one jumps for joy when they think about how hard it will be that their kid is going to be different in ways that may profoundly impact how – or whether – others value them.

So, I get that these parents on this TV show freaked out, because, of course they did, and who wouldn’t, and it’s really dumb to get pissed off by a TV show that exists mainly to sell advertising and generate revenue, and no one ever watched a network television show and said, “that precisely reflects my actual life experience, without comedic or dramatic embellishment.”

BECAUSE IT’S TELEVISION, STUPID!

But here’s my point: People often behave as though autism is a fate worse than virtually anything else that could befall their child, ever. Worse than being blind, or losing a limb, or getting cancer. The fear of autism is so great that many people refuse to vaccinate their kids against DISEASES THAT CAN KILL YOU on the basis of a thoroughly discredited “scientific study” and the say-so of a Playboy centerfold model who got her medical degree from the University of Oh, That’s Right, I’m an Asshole.

My daughter has autism, and guess what? It’s no more and no less a part of her than her startlingly beautiful sapphire eyes, her grace while trotting her horse in a dressage ring, the earnest pride she takes in being a reliable worker, or her determination to lead a meaningful life. Freak out all you want, asshole TV character parents, but even though you aren’t real, I wish I could meet up with you when your TV kid is 25 and ask you whether you’d want him to be anything but what he is.

My Allie is everything I ever hoped she would be – she is hardworking, honest, kind, and empathic. She is loving and silly and a good cook. She has a frighteningly exhaustive memory and looks great in a Carhart coverall. She’s our Boops, our Lissie, our Rosebud. And she’s perfect just the way she is.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s