More on Autism

With April being Autism Awareness Month, I've been doing a lot of thinking lately. I realized that most everything I know about autism has come from large organizations, well-known websites, and published books and pamphlets. So, for balance, I've been reading a lot of things written by autism-spectrum (AS) people...who better to give voice to the needs and desires of the AS community?

I've never known that there was so much of a divide between the AS community and their supporters, and the people termed "Curebies," who will try just about anything to make their child's autism go away. The latter group, however, is the one getting all the media attention, and so it's their warped view that they lend to society. "Autism awareness" has become code for "make sure everyone knows that autism is the worst possible thing that could happen to your child."

The focus of all of these things describes autism as an epidemic, a tragedy of epic proportions, the ultimate nightmare of parents. Everyone wants to cure it, to fix it...in short, to make autism-spectrum kids like ("indistinguishable from") their neurologically typical (NT) peers.

The more I think about this, the more I think it's a narrow-minded and even cruel goal. The following is going to be a poor comparison because it implies that autism is a disability, but I think it makes a good point.

Let's say you have a child who was born with only one leg. This is a sad situation, to be sure. The parents are upset, and they consult experts about how to deal with and raise their "abnormal," "handicapped" child. The experts give them hope, and reassure them that people with one leg can go on to live normal lives...with a few adaptations. The child is fitted with a prosthetic, and learns to walk, though her stride will never be completely smooth. She goes to occupational and physical therapy, to help her gain strength in her upper body and balanced muscular growth. She can play sports, although she may not ever become Mia Hamm. She can dance, although she may not ever be on the drill team. Sometimes people are cruel to her because she's "retarded" or "different", despite her and her parents' efforts to make her life experience as close to those of the other kids as they can. But given the right adaptations, therapies, and support and encouragement from her parents, she can become a well-adjusted and happy adult.

Why should it be any different for AS kids? Because their differences are, quite literally, in their heads, but manifest themselves in "odd" behaviors, like hand flapping, or rocking, or pacing, or staring at objects for long periods of time. They don't just LOOK different, they ACT different, and people who act different make us uncomfortable. They tend not to make eye contact, and that makes people nervous and suspicious, and makes them think the AS child isn't listening. Often, they can't (or just don't) speak, and are therefore tagged as retarded. They are often ostracized or bullied by their peers because they are easy victims. But given the right adaptations, therapies, and support and encouragement from her parents, the AS child can become a well-adjusted and happy adult. Although "well-adjusted and happy" may LOOK very, very different than what we, as NTs, are accustomed to.

So why are we so focused on making them like us?

Because it's familiar. Because it's what we consider "normal". Because how our children turn out, and how people judge their accomplishments, reflect on our worth as parents. If, somehow, we can get these AS kids to talk, or be mainstreamed into regular classes, or play "functionally" with toys ("functionally" is one of my new least-favorite words...it means, in this context, "like NTs do"; in other words, the right way), WE are successes. How often do you hear the parent of an AS child say, "I just want my child to be happy, and to be the best person they can be"? It's very rare. Why? Because the mass perception is that AS kids can't have that sort of outcome. Or, rather, what their version of "happy" and "best person they can be" is vastly divergent from what the mass perception says it should be, for NTs.

How very, very small of us. I'm joining the crusade for autism awareness -- not spreading hysteria about autism epidemics, or shaking leaflets with crappy science about vaccines, or lamenting about how these children are "lost" little puzzle pieces, but looking for new ways to help and encourage our children be happy, and to be the best people they can be.

These kids are not sick. They don't need to be cured. They need to be understood, and taught, and encouraged, and treated with respect. They have talents and gifts and can make contributions all their own, as long as we don't force them into our mold. It's called diversity, and it's a GOOD thing.

And I promise, I'll not make this into The Autism Blog, but this has been on my mind lately, so tough crackers.

Reading Assignment

So, Sasha gave everyone a reading assignment about a month ago, and if you haven't completed it, make a point of doing so now. Obey The Sasha, dammit.

Now, I'm giving you another one. It's longer, and autism-related. You don't have to read the whole thing, but please, get to at least page 11 (don't worry, they're short pages).

I've been doing a lot of reading on the autism spectrum recently, and it's things like Getting The Truth Out (the link I gave you above) that have turned my head around a bit. Maybe it'll turn yours, too. Maybe it'll even turn the head of jerks like this guy (link courtesy of The Wheezus).

Thank you for your time.

It may be that the social deficits which are the cornerstone of an autism spectrum diagnosis tell us far more about the person who made them markers for such a diagnosis than about the child whom he observes.

-Lucy Blackman

Ronery...

Zander left for Beijing on Thursday (work stuff). I haven't decided if this is easier or harder with us not living together.

While I definitely feel his absence, I'm not lonely, per se ("alone" and "lonely" being distinctly different creatures in my world). I can't ever remember feeling lonely. I'm an only child, and I've always been comfortable by myself. I found I preferred my own company to those of my peers (like many only children, I tended to get along much better with adults than other kids). So much so, in fact, I can vividly remember my parents punishing me for some transgression by sending me outside to play. I pounded on the door, begging to be allowed to go back to my room to read, or to play a four-player game by myself, or to make up elaborate stories for my stuffed-animal audience.

As a teen, I'd go to movies by myself, or spend three hours in a library. People who knew me at school were fooled: I was quite the socialite, moving between social groups fairly easily and generally being friendly and outgoing. But outside of school? Hermit. My parents worried. I didn't do the things that teen girls were supposed to do: hog the phone (why would I want to talk to people? I just spent 8 hours doing that, what more did I have to say?), talk about boys (they were all my buddies, and I preferred horses), hang out with friends...well, the FBI background check my parents required for anyone I saw outside of school was admittedly part of that last one. But it was also a convenient excuse to be by myself.

My former spouse, Dick, would follow me around the house. The TV or radio was always on. He couldn't STAND quiet (my theory is that if it were quiet, he'd have to think, and he's afraid of new things). If I chose to sit on the love seat rather than the sofa (where he was), it resulted in a 2-hour conversation about how I was this horrible cold person and I wasn't in touch with my emotions and wasn't sensitive to his needs. When I kicked his ass out, I spent the first days and weeks reveling in the blessed silence. The first weekend he had the kids, I went 42 hours without speaking, and felt more refreshed than I had in years.

One of the reasons Zander and I get along so well is that we both have very firm ideas about personal space and quiet. On the weekends, we'll go hours sometimes hardly speaking to each other, in that lovely sort of comfortable stillness. Don't get me wrong, he's also one of my favorite people in the world to chat with, and we both do our share of conversation domination by turns, but there's no pressure to keep talking if neither of us has anything in particular to say. During the week, when we get no face time, we just do the quick check-in...hey, you doing okay, you got any news, me neither, love you, bye. It's not the same as face time, but it helps you get by.

Phone calls from Beijing are prohibitively expensive. I haven't seen him since Wednesday, haven't spoken to him since Thursday, and I won't talk to him or see him again until this Friday. Check-ins are done via email. He's 13 hours ahead of me, so I feel like I'm sending emails to the future. It kinda freaks me out. And email isn't the same as hearing his voice; it's barely adequate to help you get by.

For the first time, silence is not my friend.