There’s been a story all over the news today about an “autistic” girl singing Leonard Cohen’s song “Halleluiah.” Of course, any time I see the word “autistic” paired with a quote from the person in question, I cringe. Because autistic people, by and large, don’t say quotable things. At least, not the ones who are firmly on the autism side of this “spectrum” they lumped them all in. The people on the Asperger’s side, well, that’s an individual choice for them, as much as it would be for a neurotypical person. People with Asperger’s disorder do have some very real disabilities and problems, and they’re entitled to the help they need to deal with them, but many people with Asperger’s are indistinguishable from your ordinary geeky person with maybe not the greatest social skills. They can be just as funny, lovable, annoying, adorable, clever, talkative, or silent and strange as the next person.
I must admit that I get extremely annoyed now that people have lumped Asperger’s in with all other Autistic disorders. It allows the media to give people an entirely wrong idea about what people with classical autism and the more severe variants can actually do. Someone like my daughter, for instance, could never in her life actually give a quote to a reporter about how great it was that her YouTube video got a lot of hits. It may be difficult for someone with Asperger’s to do so– they often have a lot of social anxiety and difficulty in talking to people– but it’s not flat out impossible. For my daughter, she’s about as likely to fly to the moon as she is to hold a conversation with anyone.
So when I talk to people about my daughter’s impairments and limitations, they usually just don’t get it. Or, worse, they think I am just underestimating her. I understand why people wanted Asperger’s classified as an “autism spectrum disorder” (in short, for insurance and schooling purposes, also to have their problems taken seriously) but it’s had this effect that we parents of the severely afflicted had originally feared would happen– ordinary people completely not getting the things we have to live with and thereby underestimating the real needs of our severely disabled offspring. No, our kids will never get up on a stage and sing a song. No, our kids will never marry. No, our kids will never be able to hold a job or live on their own or drive a car or be in charge of their own lives. They will always be a danger to themselves, and sometimes to others.
My daughter is 21 years old, and the sibling that she has the most in common with is her 2 year old brother. Socially, they’re about on the same level. He’s actually outpacing her these days. It breaks my heart, every day of my life. Someone has to watch her, 24 hours a day, just to keep her healthy and alive and well. It’s not a matter of “giving her a chance” or “not knowing what she’s capable of.” She’ll run into traffic with absolutely no knowledge that being hit by a car will hurt her. She’ll pull a live electrical wire out of a socket with no awareness at all that she’ll be shocked. She’s drawn to water, but has no fear of drowning. She’s a beautiful innocent child in the body of an adult woman.
I don’t write this out of frustration with people on the autism spectrum, although there are a lot of people who seem to be suddenly “discovering” that they’re “autistic” at the age of 40 or something, after a life lived otherwise completely normally. What they seem to mean by it is that they have terrible social anxiety, or that they have thinking patterns that are slightly different than the norm, or that they have difficulty processing their emotions. Which are all real problems and can be a terrible thing to deal with at times. But it’s not “Autism.” You’re not sitting in a corner, flapping your fingers in front of your eyes, humming a tuneless droning noise for hours, and compulsively scratching holes in your skin until you’re covered in scars, now, are you?
That’s the autism that we’re dealing with here. The sort where we have listened to the same 6 second loop of her favorite song for several hours out of each day for months, until it changed to a different obsessive compulsion. The sort where we know every Disney and Don Bluth film by heart, because we’ve stayed up all hours of the night re-watching and re-watching them while she stays awake running in circles. We have the sort where we’ve run through every possible medication in the book just to allow our daughter to get a night’s sleep (so maybe we can sleep for one night. After 21 years of broken sleep, you get a little weird.) We live with the sort where we’ve had to put plywood over her walls, because she was systematically removing all the drywall, eating some of it, and trying to physically tear the house down.
Ah, I don’t know what difference it makes to talk about this. No one believes how hard it is, because there’s really no way to understand it except to experience it. And I wouldn’t wish such a terrible fate on any person or their family. The grief just becomes a part of who you are, it never goes away.
Some people can live with an autistic spectrum disorder and live a fairly normal life, with friends and hobbies and jobs and school and relationships.
And some can not.