Thanks to Liz, who shared a brief excerpt on what Autism looks like from Laura Schreibman. Jane and I are both familiar with her work and I have cited her several times in my own. The full article on the AFT site is worth a read as it gives a comprehensive overview of autism and its treatment from a recognized expert in the field. That’s not to say I agree with everything she wrote…
For Autistic Children, Relating to Others Is Life’s Greatest Challenge
By Laura Schreibman
Peter is a beautiful 5-year-old boy with blond hair, blue eyes, and freckles. He looks like many other very cute kids. He is well coordinated, active, and agile. However, while Peter looks perfectly normal, it soon becomes apparent as you watch him that Peter does not behave like a typical child. He does not interact with the other children in his class, and in fact he avoids contact with them. He is not attached to his parents or anyone else, preferring to be alone. Rather than playing appropriately with toys, he puts them in his mouth or flaps them in front of his eyes. He does not communicate but instead parrots TV commercial jingles or bits of conversation he hears from others. He throws frequent and intense tantrums, often lasting over an hour and precipitated by nothing more severe than the discovery of a drawer left open, the disruption of a precise line of toy cars he has arranged by color, or the removal of one of the McDonald’s mustard packets that he insists on carrying with him at all times. Sometimes during these tantrums Peter bangs his head against the floor or the wall or bites his hand. He has calluses on his hands from repeated biting. When not otherwise engaged, he will jump repeatedly while flapping his arms and whistling. The teachers in his school try a variety of techniques in an effort to help him. Understandably, his parents are immensely frustrated. They cannot reach their son emotionally despite endless attempts. Their lives are complicated further by the fact that they avoid taking him places because of his disruptive, bizarre, and embarrassing behavior. Their son has autism.
If there is anything I’ve learned from being a parent and teacher, it is there is no comprehensive picture of what autism looks like. Autism Diva looks a lot different than Charlie over in Autism Land. In my own land, I’m finishing ESY for Darius, while also having some times with my own son, Thomas. Schreibman’s picture is of a child disconnected, aloof and not socially involved with anyone. Charlie isn’t like that. Neither is Darius or Thomas. You can see what autism looks like for Charlie on Ms. Chew’s excellent blog.
When I last mentioned Thomas, we had decided that the Concerta was not doing any good but was actually causing some rebounding. So we discontinued it, and Thomas actually finished the school year with some good days.
However, vacations and breaks are very tough on him because he has so much unstructured time. Jane has season passes to the Atlanta Zoo and the Georgia Aquarium, which both boys enjoy. However Thomas has been getting harder and harder for Jane to manage. He weighs about 75 pounds, and if does the dropping-to-the-floor thing, she’s pretty much stuck.
Often a meltdown will start out over food. The Georgia Aquarium has a food court where they happen to have his favorite food; pizza. And it is plopped pretty much in the center of the place, so it is difficult to avoid. Thomas starts whining, “I want pizza!” Jane sticks to her guns (and the family budget) and promises them their lunches when they finish and get back to the car. Thomas whines and may even scream, “I WANT PIZZA!” and scream some more and flop on the floor. Now he’s caused a scene. I wasn’t there this trip, so Jane is on her own. She eventually is able to get him and Percy out of the Aquarium (you HAVE to exit through the gift shop!) and to the car.
Thomas likes to eat out and if it were up to him, we’d do it every day for every meal. Which means that going to the grocery store turns into a meltdown when it comes time to go home. Or when going to the recycling center and we pass a McDonald’s. Screaming often ensues and the meltdown can last a good hour.
He also has a tendency to want to run off. In school and church, it’s not a huge issue, but in the community it can be a dangerous thing. I’m usually all over him when he is with me, keeping his hands on the cart. He’s way too big to actually get in a shopping cart. But with Jane, he’s been known to get away on occasion. In our yard he’s learned to stay in the boundaries and is generally okay but still needs to be watched.
There has been opposition and defiance, which I’ll cover more in my next (and most controversial) post.
I feel like I’m sort of rambling here. Autism looks different to different people. To me, the parent, it is a world of constant diligence. I see other parents of NT kids just let their kids run all over the place, doing whatever they want in the neighborhood. That does not happen here. We are always watchful and diligent and always know where our kids are with our eyeballs fixed on them 90% of the time. It’s hard to believe the stuff that can happen that other 10% of the time!
It is not an easy life, and this is the part of my life I totally had no choice in. I’ve had to learn and grow and stretch in ways that are hard to imagine. All parents do. I think “diligence” is the key difference between me and the NT parents. And Jane is even more hawkish than me over the boys.
But I still can not tell you what autism looks like for other people. Schreibman’s account tells someone’s story, but not mine. There is some truth in it, but not for everyone. I’m still learning about it and so is she.