World Autism Awareness Day Blog Hop

I’m so happy to be taking part in RJ Scott’s World Autism Awareness Day Blog Hop (<click the link to go to her masterpost) 🙂

Autism Awareness Graphic

RJ asked that we each post an Autism Fact, and so I chose this one:

Typical ASD behaviors include stereotyped actions (hand flapping, body rocking), insistence on sameness, resistance to change and, in some cases, aggression or self-injury.

Because for me, it is the most applicable.

Every day is Autism awareness day in my house, though I will be the first to admit my son is very “typical” and is probably right on the edge of the autism spectrum (depending on what test they are doing these days). He is what some people would call “high functioning” though I never use that term if I can help it.

He was diagnosed at age 2, and so, as you might imagine, a lot has changed for him since then. He’s gone from a little boy with very few words who would not respond to his name or a direct question, to a boy who has an extensive vocabulary, converses typically, and asks many questions of his own. He went from a kid who would not tolerate certain clothes, who screamed at the touch of skin lotion or sunblock, and who refused to put his hands on play-doh, to a kid who can wear most anything and build sculptures with sticky mud (though he still prefers clean hands).

But one thing that hasn’t changed is the “stereotyped actions.” For him, that means tapping. Lots and lots of tapping. Stereotyped actions, or Stereotypy, is very common in people with ASD. It is also kind of common in the rest of us. Who doesn’t twirl their hair or tap their pencil sometimes? But for my son, like many ASD kids, the repetitive behavior is constant.

And it is what I would like to raise awareness about.

I think one of the saddest things you can go through as a parent is to see your child become the butt of jokes or the target of teasing. And especially heartbreaking to see them mocked for something they cannot control. My son is still young (he’s 8) and so most kids his age are really tolerant and don’t see too much wrong with him repeatedly slamming an empty water bottle against the edge of a table. But older kids and adults are kind of harsh. He’s been called “rude” and “annoying” and lots of other things, probably worse things out of my earshot I’m sure.

And I get it, because he does seem “normal.” There is no physical deformity, no other clue that he is not a perfectly average little boy. Except this behavior, this annoying disruptive tapping. So I do understand why people who don’t know him are quick to reprimand him. But he is not “normal.” No matter how well he manages to blend in, he still fights to do so. He has difficulty with fine motor skills and with planning, and has many struggles that are more invisible (emotional issues, problems relating to people) as well as sensory processing issues.

So what I’d like to remind everyone of, during this awareness campaign*, is that not every person who is on the autism spectrum is obviously “disabled.” Many people pass for normal**, and their struggle is internal. These people try really, really hard to do the right thing, to act properly, and to blend in. Please don’t hurt them when they don’t quite “fit.”

My son’s tapping is something we work on a lot.

On one hand, he wants to do it. It soothes him and he likes it. He also needs to tap, and it is out of his control. He will tap on his knees or thighs, if he is supposed to be quiet. He often has bruises there, the result of tapping sticks or bottles repeatedly on his little kneecaps. This is not something he is doing for attention or to be purposely disruptive.

On the other hand, he needs to do normal kid things, like spend all day in a classroom. And making a ton of noise when classmates are trying to read, or the teacher is speaking, is not okay. So we work on it, to help him be as socially acceptable as possible. And so no one makes fun of him.

I want the world to accept my kid just the way he is. But I am not stupid, and I have been kicking around this world long enough to know that is not going to happen. So I try to help him fit in, as best I can. To keep him safe. (And because a mom beating the crap out of a second grader for teasing her kid is generally frowned upon.) And I try to control his tapping. We try tapping quieter objects (there was a brief period of peace when he was into tapping plastic bendy drinking straws. ahh. those were good days) we have times when tapping is simply not acceptable (like at the dinner table or in a movie theater) and we have places where he has to ask for permission to tap (like when we are visiting friends or family).

But I realize the most I can do is try to force this behavior to fit into our lives, I cannot eliminate it. So there will always be teasing, and irritated looks, and people who think I am a shitty mother who can’t (or won’t) control her kid. My job is to keep him happy and healthy, and to give him the skills to navigate this world on his own. Tapping is only a small part of that, but it sometimes feels like a huge thing.

I hope if you have read this far, that the next time you see someone doing something a little odd, some little repetitive behavior, some weird noise, you will stop before you scoff, and try for a bit of empathy. They might be fighting a battle you cannot see.

*(“a call for accountability” is a fantastic post about the harm that “awareness” campaigns can do. read it please!!)

**(“not that autistic” is a great post about being able to “pass for normal.” read it please!)

8 thoughts on “World Autism Awareness Day Blog Hop

  1. I debated on whether I should comment. But since this for autism awareness, I wanted to help keep the conversation going. I apologize for the length. Once upon a time, I left a comment that I have one son diagnosed as high functioning and the eldest (16) who had an IEP until middle school. Both boys are doing well and I expect them to live relatively normal lives, despite their ‘quirks’.
    However, I have not talked about my second eldest son, ‘J’, who is considered Emergent or in plain language, will never ‘pass’ as normal. *snort* What is normal these days? He recently turned 15, but his mind is closer to age 7/8 with nowhere near the verbal or social skills. To the average bystander, he’s loud, obnoxious, and with his current height, his bizarre behavior is intimidating. But to anyone who spends time with him, ‘J’ is a sweetheart.
    He has some regular phrases with a lot of echolalia. Each day is a good day when he comes home happy from school. It’s a great day when we see his academic skills increase. We take each day as a victory, whether good or bad… and when they get bad… let’s just say that it takes me time to recover mentally and physically.
    As a mother to several kids and two officially on the spectrum, life is a massive roller coaster ride. We’ve had our share of nasty comments and finger pointing, even giggling behind our backs. It didn’t register in our minds at the time, but my mom-in-law was there. She noticed that we were the objects of ridicule and she blew up at the gigglers. We’ve also had good days. Like the day a stranger in the supermarket came up to me and complimented on how ALL five kids behaved beautifully and more families should be like ours.
    My husband and I cherish the good times to get through the bad and thankfully with the help of his current school, there’s more good than bad. If parents of autistic kids put two decades of therapies and resources into helping their children be the best that they can be no matter the outcome, then it doesn’t hurt for the public to spare ten seconds to hold back criticism. I hope that some day soon, other people will recognize that with autism, there’s plenty of potential and good in these kids and adults. They just gotta put in the effort and look.
    Right now my son’s school has a fundraiser on Go Fund Me. Don’t feel obligated, actually. As a proud mom, I wanted to point him out in the picture. He’s in a blue shirt on the left and standing in front of the door decorated with a tree. 🙂
    https://www.gofundme.com/pso9ig

    • Aw, your son is beautiful! Thanks so much for sharing that picture and the link! I have tweeted and shared it now, too 🙂
      I know you have commented before about raising your kids. Thank you for sharing your strength again, it helps me more than you know.
      I agree, part of what makes the ridicule or passive judgement of strangers so hurtful is that it seems to dissolve all the work we do. You spend years as a parent – guiding, and teaching, and going to therapies and schools and specialists, and implementing all kinds of plans and routines – trying so hard to get your kid to fit in the “normal” box, and it feels like some stranger can take all that away with a disapproving “sorry, not good enough” look.
      I know the approval of strangers doesn’t matter, but it is an indicator of how my kid will be treated in the world when I am no longer around to protect him, and that is what is really heartbreaking to me. And plus, like you said, it takes like 10 seconds to stop and think and formulate a more empathetic response. It’s the least people could do!
      I’m so happy to hear your son’s school is a positive place for him (and your family) and it sounds like you’ve got a lot to be proud and happy about.
      Your kids are lucky to have you, Eve.
      Thanks for commenting ❤

  2. Thank you for sharing so much about you and your son. I understand wanting to protect him and trying to work with him. I so wish that people would just accept others more without questioning. It sounds like you are doing an amazing job with your son.

    • Thanks for stopping by!
      I think that if people would accept others more, either with or without questioning, but at least without hate or judgement or negativity, the world would be a better place all around. Hopefully we can all do our parts to make that happen 🙂

  3. Thank you for your post your son sounds like a lovely boy and I think acceptance is the key, many people who are on the autism spectrum are so different and that’s why this blog hop is so important to spread Autism Awareness.

    • Thanks! Yes, that is why I wanted to participate, mainly. Because Autism does not need a cure or a solution, but people with Autism desperately need awareness and empathy from others.
      I’ve heard it said that if you know one person with Autism, you know one person with Autism. Meaning, of course, that as a spectrum disorder there are infinite variations, and so assumptions and prejudices can be really harmful.
      Thanks so much for stopping by, and for the comment! 🙂

    • I’m sure they are lucky to have you in their lives. Supportive family is so important!

      I’ll admit that before my son was diagnosed, there was a lot I didn’t understand. Now I realize that the most important thing is just TRYING to understand. That revelation has actually helped me in parenting my “typical” child, as well. I’d like to think that focus on empathy and acceptance has made me a better parent and a better person. (but who knows, lol)

      Thanks so much for visiting, and commenting!
      ps- loved your post on writers retreats, thinking of planning one myself!

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