Autism Awareness--for everyone

That right there, that adorable little face trying hard not to smile with a mouthful of bubble gum, showing off his stylin' new haircut, is the face of Autism. He doesn't look autistic at all, because there is not a way for autism to look. It manifests itself behaviorally, not physically, so autism is hard to see. Sometimes people don't see it when it's pretty obvious but it's there if you know what you are seeing.


It was tough for me to read a blog with so much self-righteousness injected at each and every opportunity, but I had to do it. I had to go and read what was meant to be a humorous venting session by a shrew of a woman who calls herself, of all things, Smockity Frocks. I'll not be providing a link to her actual blog, for two reasons. One, us bloggers are proud folk, and many of us track visitors with counters, either hidden or visible. I would hate for Smockity to assume that people are going to read her blog because it's good. Two, I really don't give a shit what Smockity has to say on any matter after reading a Google cached copy of a sample of her work.

Here's the link to the cached version of her blog from earlier this week, which has caused such an uproar (a reasonable uproar, carefully contained) by autism bloggers around the country. Please give it a read before you continue onward here. I'll wait.

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Okay. So maybe I'm being uncharitable to Smockity. I doubt it. She sounds like one of the know-it-all moms who feels that if she raised everyone else's children, they'd all be perfect. You know the type. It's VERY difficult for me to not attack the person in this instance, but to challenge only her ideas. I could fill two or three pages with sick hatred toward this woman. But that's not going to help. She had a chance to apologize to autism moms after numerous "faithful readers" tentatively mentioned that the child in the library was probably autistic, and that the child's grandmother was probably doing the best she could under the circumstances. Did she apologize? Nope. She got defensive. She got angry. She got upset that people called her on it, took down the blog, and went to her room to pout. (I'm guessing on the pouting, the other stuff is verifiable.)

I'll be trying to use my powers for good, not evil. Here we go. April is Autism Awareness month and Smockity's blog was like a sledgehammer--showing us that the general population may have no idea what autism looks like, let alone some of the coping skills that autistics utilize to make their way in a fairly hostile world. The little girl in the library's tippy-toe walking and hand-flapping, her repetitive speech, her "stims" as we call them, they were like a big blinking red light to me. Before Smocky even began her tirade, I knew this little girl was most likely autistic. My heart sank as I read on, with Smocky's mocking of the girl and her grandmother getting meaner and meaner with each line. Is this what people think of my son? Do they make fun of his actions? His speech? His unbelievable challenges?

I'll begin by saying that most autism moms know how I feel. We do our absolute best and sometimes get through the most humbling and humiliating experience only to collapse in a sobbing mess once we make it back to the car with an autistic child in full-blown meltdown. I've been there, more times than I care to remember. These are not just tantrums, people. I have seen my share of tantrums, having parented several children before my Eli showed up. Sam in particular threw some pretty impressive tantrums as a three year old. Eli's meltdowns put Sam's tantrums to shame. Screaming and throwing oneself on the floor for a few minutes over not getting a popsicle in no way compares to a meltdown of Eli's epic proportions. He banged his head on any available surface, often until he had lumps and bruises. The floor, a wall, a door, didn't matter. So long as it was a solid surface he would headbang. It was one of the very first signs that I was not dealing with a typical child.

I have little experience with other autistic children, although I do know several. So what I will do here is relay some of things my own son has done to display his autism, if someone knows what to look for. Ready?
Headbanging! No, not the heavy metal version. The real version. Frustration was almost always the trigger for it in my kid's case. He was a serious headbanger until he finally started talking around age 4. He had some speech before that age, but it was fairly limited and extremely repetitive, or what is called in the autism world, echolalic.
Echolalia! Repetition of a phrase or a word over and over and over and over..... Again, stress was the usual trigger. We would be alone in the family van, cruising around town to pick up older siblings from school and activities with Eli alternately sobbing, screaming or saying, "Car" or "No car" literally hundreds of times. Seriously. "Car" was the word he used for anything with wheels on it, "No car" was anything without wheels.
Fixations!! Lots of them. His focus level is intense, and very narrow. Once he gets an idea in his head, it stays there---for as long as it takes. Redirecting is a great tool, but it doesn't always work and it's not always an option.
Meltdowns! Oh joy. Like a tantrum, only worse. Eli's meltdowns could last for hours. There was absolutely no getting through to him when he was/is in a meltdown. There is typically screaming, body rigidity that would impress a body-builder in its resolve and strength, attempts at hitting, kicking, biting and hair-pulling for anyone trying to intervene.
Hand-flapping! I remember when Eli was just in the process of being diagnosed with autism and reading about it, thinking, "Well, there's ONE sign he does not display!" only to see it show up a little later. He still hand-flaps at times, mostly when he is excited or happy, just as the little girl in Smocky's blog did. What is hand-flapping, anyway? The best way to visualize it is by doing it. Put one or both of your hands up near your face, and flap, very fast. Touch your cheek or chin occasionally, as a way to gauge how close your hands are. Now flap again, faster! A friend with an older autistic son said she called it "Happy hands" when her son did it, and she was a little wistful for it when he outgrew it. I've a sweet phone video of Eli waiting on the little yellow school bus as a 5 year old, so excited and happy about his new school, flapping away.

These are just a few of things my own son did. There are other obvious signs that something may be amiss, neurologically speaking. For example:
Toe-walking! This is when a child walks on tippy toes most if not all the time. No one really knows why. They just do it. Very common in autistic kids.
Lining up toys! Obsessively. Eli would line up dozens of Hot Wheels on the floor very carefully and freak out if anyone moved even one of them.
Looking at things sideways or from different angles! After he'd lined up the cars, he'd lay flat out on the floor with his head turned to the wheels of a car and very slowly roll it back and forth watching the wheels spin. For HOURS.
Not looking someone in the eye! Many kids are shy, not just autistic kids. Eye contact is a huge bugaboo for autistic people. It can be very painful for someone to maintain gaze with someone, to the point that they cannot do it for more than a few seconds before they have to look away. So if you want to tell an autistic kid to "Look at me when I'm talking to you!" you may want to rethink your strategy.
Smearing their poop! Oh gross. Yeah, I went there. Eli did this for two years, every night without fail. I got REALLY good at getting rid of poop smell. Most autistic kids that do this will stop over time. It is thought to be a sensory issue by most parents who've experienced it.
More sensory stuff! Crowds of people, bright lights, loud and/or unexpected noises, tags on clothes, seams in socks, textures of foods. Any and all of these situations can cause overload in autistic kids. Eli was allowed to wear a baseball cap and sunglasses on the school bus when he was smaller and couldn't take the slanting morning sun. He's just now learning to appreciate music yet he is a complete carnival ride addict. The input is favorable from the ride, physically and the input from bright lights and loud music unfavorable.

Obviously, Eli has progressed quite a bit over the past few years. It's truly a labor of love for his therapists, his staff at school, and his friends and family. He no longer smears poop, headbangs, lines stuff up, etc. A lot of the really serious symptoms have faded and gone away. And over the years, I have learned to cope with some of his unique challenges and honestly, I don't care what most people think of my abilities as a parent. That's actually a victory in itself--knowing that what other people think doesn't matter. But when it turns ugly, like Smockity mocking the little girl who so obviously had something other than brattiness going on, I do care. Because it matters what people think of our children. Our kids are not going anywhere. The vast majority of children diagnosed with autism will NOT be hidden away or institutionalized like in the bad old days. The sooner the general public can recognize, accept, and respect our kids, the better for all of us--not just our kids.


As I said earlier, I have a lot of experience with Eli, but every autistic child is different. Some kids never head-bang. Some don't line stuff up. It's up to us as compassionate people to not judge a fellow parent harshly on their parenting abilities when we see what we assume to be tantrum, brattiness or odd behavior. For everyone sake, try to take a step back, no matter the situation, and reserve your judgment, be a good person, and if the mom has other small children or seems truly overwhelmed, offer to help. Show a little tenderness, a little compassion.

And as an added bonus, please read the following link to get an idea of what Autism really is and how it may affect a child.