I rarely get angry…
but when I do, I usually have a pretty good reason. Like many of you, I just saw the letter written by an anonymous mother, given to a grandmother who cares for her grandson with autism on summer days. For the full letter, please check out this link
. In short, this woman berates the grandmother of this child with autism for his behavior, suggesting he be “euthanized” and his “non retarded body parts” be donated to science. She goes on to say that “no employer will hire him, no normal girl is going to marry/love him.” This young man, Max, is 13 years old. My son is 11.
This mad woman’s rant touches on probably all the fears a parent of a kid with autism faces – unemployment, loneliness, their own mortality and what happens to my child when I’m gone, social alienation, being the target of hate or violence.
Where to begin?
Autism is a spectrum disorder. This means that you can be affected a little bit, or a lot. It’s kind of like saying some guy is tall. It’s relative. People have misconceptions about what autism is. Most people either see kids rocking, flapping, and crying OR they picture Rain Man. Either or neither might be true, which is what makes autism so unique. There’s a saying in the autism community that says, “If you’ve met one kid with autism, you’ve met one kid with autism.” Just because you know my Jake well, doesn’t mean you have much to go on when working with Max, or anyone else, for that matter. I prefer people-first language. Jake has autism, he isn’t autism. I’d rather he be known for being a little boy first, and his developmental disability second (or even last, while we’re at it). The hardest part of having a child with autism is the reactions you get from others. Sometimes it’s pity, sometimes it’s outrage, but often times it’s the looks of disapproval. Autism is often a non-obvious disability. If Jake had a wheelchair or braces, or something you could see from across the supermarket, we’d probably get fewer looks that all say, “why can’t you keep better control of your poorly behaving child?”
Can you tell which of these kids has autism?
Sensory processing disorder
People with autism often have some level of sensory processing disorder. This means that their brains don’t react to stimulation from the environment like a neurotypical person’s brain does. For example, many people with autism have a dampened response to pain or cold than the average person. Loud noises are particularly disturbing for Jake. He has a hard time filtering out important information when there’s noise that he considers loud in the room. A better way to say it might be this: Let’s pretend we’re having a conversation over the fence in the back yard. I can feel the grass beneath my bare feet, hear the lawnmower in the distance, the laughter of the kids playing in the driveway, feel the dampness of the shirt that’s sticking to my sweaty back, hear the cicadas as they sing their summer song, and note the reflection of the sun on my car’s hood. All the while, I can pay attention to the words you’re speaking, the tone in which you speak them, and understand the non-verbal cues on your face. Jake can’t always get that job done. You or I do it without thinking, but these things overwhelm my son.
Jake at Popham beach this past weekend. He really wanted to play in the waves, but they were too loud.
Can’t vs. Won’t
Most, if not all, behavior is a response to something. If you touch a hot stove, you pull your hand away. Imagine you’re at Wal-Mart on black Friday. Pretty chaotic, right? Adults with autism, who have also developed effective language, have reported that every day life can seem as chaotic as Christmas shopping in December. There have been people who couldn’t focus in class because they couldn’t get over the sound of their own heart beating in their chest. Fluorescent lights that flicker at 60 pulses/second can seem like strobe lights to someone who’s sensitive to them. Seams in clothing can put people on edge all day. Is it a wonder they may appear to be not listening, or misbehaving in class? I’m not going to pretend Jake’s an angel. He’s an eleven year old boy. Sure he has his bad days, but he’s also becoming aware of the social gap between him and his friends. Now that games are more complex than Tag, he’s falling behind even further. He doesn’t have the language or the comprehension to stand around in groups discussing what he did last weekend, as many of his peers do. He prefers to play video games, where he knows the rules and feels comfortable. I guess I bring this up to say that it’s not that he Won’t be a good boy and sit upright, earnestly paying attention in class for an hour, it’s that he often Can’t.
Jake and Beth in Freeport, doing some school shopping.
You know what else toasts my buns? The word ‘normal’. To say that the other kids in class are normal automatically implies that Jake is abnormal. He’s non-typical. Who amongst us is truly normal? Aren’t our differences what make life so awesome? Who gets to decide what normal is, anyway? I have two neurotypical, or typically developing children, and one with autism. Jake is also intellectually impaired, which is the new way of saying retarded. Doesn’t retarded have terrible connotations?
Taking selfies on the couch with Mom
At the end of the day, don’t we all just want to be accepted for who we are? Your friends are those who know your true self and love you anyway. Education goes a long way towards acceptance. When we got our diagnosis, we asked our pastor for some time during the service to speak to the congregation. We sat before our friends, relatives, and neighbors and explained to them what autism was and what it means to Jake. We, especially my wife Beth, spent hours with Jake’s schoolmates telling them how to relate to him, fostering friendships, and how to respond when he’d have a meltdown. I was surprised when people would come up to us and praise us for ‘taking him out in public.’ This scared me to death. I realized that it wasn’t too many generations ago that the ‘weird uncle’ or ‘retarded kid’ wouldn’t be allowed to leave the house. Did this really happen? I’m proud of my son, and proud to be seen with him. I look for every opportunity to enlighten the masses, but if his behavior offends you and you don’t have the sense to use that as a chance to ask a question and get educated, deciding rather to give us dirty looks and mutter under your breath – kiss off, then.
The kid’s got a great sense of humor!
Jake is what we call verbal-ish. He can usually make his needs known, but is unable to carry on a thorough or detailed conversation. We also recognize that there are many people with autism who can’t speak for themselves. So, it’s our duty to use OUR voices to educate the masses and hopefully change people’s attitudes towards those on the spectrum through advocacy. Not to toot our own horns, but we’re active in the autism community. Beth spent a few years on the board of directors for the Autism Society of Maine. We’re both currently Autism Information Specialists. To help give voice to the voiceless in school, I ran for and was elected to the local school board. We have appeared in magazines and on TV.
We were the first family to be featured in the Autism Society of Maine’s newsletter, in what they called the Faces of Autism series.
Maine Public Broadcasting’s Making Our Way: Autism video. We were featured. That’s Jake face on the cover next to Dr. Temple Grandin.
I guess in the end it’s true – it takes a village to raise a child. There’s so much information out there on autism, its treatments and presentations, that there’s no need of anyone writing a letter like the one written to Max’s grandmother. We have been embraced by our community, and for that we’re thankful. Kids with autism should be celebrated for their uniqueness, just like every other kid out there. The prevalence of an autism diagnosis is now 1 in 88 kids. The rate is even higher in Maine. It’s our differences, not our similarities, that makes the world such an interesting place to live. Tolerance, people. Look it up.
Jake after buying shoes for school.
I’ll leave you with a story. This past weekend, we went school shopping with Jake. School shopping in Freeport, Maine has all the hallmarks of an unsuccessful outing for Jake. There’s no telling how many stores we’re going to visit, or what we’ll find, or how long we’ll be gone. It’s a ‘seat of your pants’ kind of day. Jake’s least favorite kind of day. Anyway, he’d been doing OK. No eleven year old boy likes trying on clothes, then being inspected by the Mom for fit, style, etc. Jake hates lace-up shoes. He prefers Crocs, so you know right away the kid’s got no style. He’d wear them all winter if allowed. We went into Bass Shoes. We found a pair of slip-on canvas shoes we didn’t hate. Jake tried them on. We of course had him walk around the store, jump, tip-toe, etc. We do those things to ascertain fit. He’s an unreliable source when it comes to “Do they fit?” By the time we were ready to leave, he decided that he didn’t want to take them off, he didn’t want to stand up, and he didn’t want to shop anymore. He plopped himself on the floor and announced that his belly hurt, and that he wanted to ‘rest’ on the couch for the rest of the day. Loudly. Needless to say, people noticed. This is where a sense of humor and information can help. I went to the lady at the counter with the empty shoe box. I told her that my son liked the shoes, but given his ‘touch of autism’, was unwilling to part with them to be rung up. Would she like me to drag his leg over for inspection prior to being checked out? I said this with a smile and the whole mood changed. Her concerned look, having witnessed the eleven year old boy moaning on the floor, went from perturbed to understanding in a hurry. She gave him a long look, said, “he’s cute”, and totaled my purchases. As we dragged him out onto the street, she wished us well, and seemed no longer bothered by the scene. A smile, a clue-in, and a little self-deprecating joke was all that was needed to defuse an otherwise uncomfortable situation. That’s good advice – write that down.