Integrating Autistic People Into Society

The Wellesley Townsman published an article last week on my fund-raising campaign and and they keyed in on the fact that my goal is to ensure that Julien is integrated in society. The article’s author also had a child with Autism and during our interview she immediately understood what I meant by my this comment about integration, because it’s something that all us parents of Autistic kids worry about the most. After all, Autism isn’t life-threatening, it’s rarely incapacitating, but it can result of a life on the fringes for those it afflicts.

It’s the little things that Autistic people have trouble learning that tend to isolate them, for example, to greet people and make eye contact while doing so, to smile when somene approaches you with a greeting, to appear interested in what they have to say, to take interest in people, to not engage in behavior considered untypical (like hand flapping, making strange noises, or repeating things over and over again), to follow directions, to vary your topics of conversation, and so on.

But what really challenges them is the apparent contradictions between the various “rules of society”. For example, you shouldn’t lie, but you also shouldn’t insult people. Thus, when the nice lady leans in to tell you what a cute kid you are, you shouldn’t say “your breath really stinks”. You should use your words, but there’s a place and time (and volume) to say anything that’s appropriate. Recently, a neighbor’s four year old daughter stopped by and mentioned that one of her mom’s friends had a baby in her tummy, to which my son informed her that it was actually a fetus in the uterus that was being fed through the umbilical cord. I had to step in before he also gave her a lesson on how the fetus got there to begin with. Another my son has trouble with is “You should ask for help, but recognize that sometimes we’ll be able to help you and sometimes we wont.” I can’t tell you how many times he’s exploded into a full nuclear tantrum just because I didn’t drop everything and help him find his Gameboy.

To be clear, I think my son is brilliant in many many ways. He is one of the most intelligent children I’ve ever met. In kindergarten he was already reading at a second grade level (according to his teacher). Now in first grade, he corrects his 3rd grade brother on his homework, and has learned many of the multiplication tables simply from overhearing me drill his brother. His ability to memorize dates and facts is uncanny. If you give him a date of significance (a holiday or birthday), he can tell you what day of the week it’ll be this year and he does it because he’s memorized what they were last year and knows to shift forward by one day. He’s a child expert on astronomy, which are the biggest, which are composed of gases only, which ones have moons, what their order is from the sun, what a black hole is, a red dwarf, and sometimes when he plays he pretends he’s built a time machine that’ll take him to the other side of a black hole.

Which is not to say that I’m in awe of him only because of his intelligence. Julien has a certain sweetness about him that make everyone who knows him – even the teachers he spits and claws at, as well as threaten to hurt – fall in love with him. Of all my children, he’s the most willing to receive affection. If I sit next to him, he puts his head on my arm. If we walk alongside each other and I let my hand near his arm, he reaches up to hold it. If I ask for a hug, he gives it to me without hesitation. Oh, and the best thing of all – he is incapable of lying. If he tries, he contorts his face because he knows that with one long look I’ll know.

I have to make clear how much I love and admire him “just the way he is” because there is a group of people that, in an effort to reduce discrimination against Autistic people, appear to have cast an accusative finger towards the “Neurotypicals”, those that are not on the Autistic spectrum. I’m all for eliminating discrimination by creating awareness of the autistic experience, after all I know that Autistic people can’t help the way they’re wired and no one should accuse them of just being asocial or misbehaved. But it’s a little misdirected to imply that the problem actually lies with society for not being inclusive enough and with the parents of autistic kids who worry unnecessarily about their kids strange little behaviors.

We can all create lots of web sites, post touching videos (like the one titled “Autism is Beautiful” in my vodpod on the right), and encourage the general population to look beyond these behaviors at the brilliance these people contain within them. But what guarantees do I have that the school bullies who may be predisposed to calling Julien names because of his atypical behaviors will have been sensitized to his condition and control his hurtful comments. How will I make sure that the employer who interviews him will overlook the seeming frostiness and lack of interview skills, understand that he offers a great value to his corporation and actually give him a chance.

More importantly, how will Julien find romantic love if he doesn’t learn that you can’t demand things from people, that you need to persuade them, negotiate with them, be flexible and compromise? This is an important one, because he’s already informed me that when he marries, his wife will HAVE to bathe him everyday and that if she doesn’t he’s going to lock her in a cage. I’d attempt to inject some humor here, but I’m afraid I may be misinterpreted, but you can imagine all the possibilities.

In truth, Autistic people can be beautiful, but Autism is not a beautiful thing. If it sounds like I am in fact worrying about seemingly unconsequential things, I will admit that because Julien is a “High-Functioning” Autistic, some of the issues I deal with are not likely to drastically impede his success in life. However, for every HFA, there are many others that are low functioning, such as the child in this video. Children with classic autistic symptoms like him will have difficulty forming relationships, becoming employed and caring for themselves without some serious treatments and interventions. And I have to admit that, although Julien is my motivation for raising funds for the DMC, it is kids like these that need the research that DMC is conducting the most. It is all these kids that I’ll be thinking of when I run the Covered Bridges Half Marathon tomorrow.