Why I Won’t Apologize That I Find Autism Awareness Frustrating

Written by Jim Walter on March 27, 2017
autism awareness

If you're like me, Autism Awareness Month is actually every month.

I've been celebrating autism awareness month for at least 132 consecutive months, and counting. My younger daughter, Lily, has autism. She sees to my continuing autism education and awareness.

Autism impacts my life, and my daughter, and my world, and because of that, I really want the people who make a difference in our lives to "be aware." By that I guess I mean at least to have a general sense of what is involved. I want the first responders in my neighborhood to understand why they might not get a response from my daughter if they ask her name and age. I want police to understand why she might run from them. I want teachers to be patient when her behavior is communicating a deeper problem than just reluctance to comply.

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Autism, like everything else, is a complex issue — and a political one. And like everything else, it gets more complicated the more you learn about it. To help you be supportive, or at least not harmful, to people you know (and with 1 in 68 school-aged children having autism, the odds are that you do in fact know them), autism awareness is extremely important.

At least to some extent. Because, sometimes, autism awareness can be a bad thing.

Too much awareness

The complexity and politics of autism can become overwhelming with too much research. I feel overwhelmed by some aspects of simply writing this article. The more aware you become of all the issues, the harder it becomes for you to take a step without fear of offending someone you're actually trying to be an ally to.

Do I vaccinate, or do I not? Do I say “autistic” or “child with autism”? “Cure”? “Accept”? “Blessing”? “Curse”? The deeper you dig, the harder it gets. This dovetails nicely into my next point, namely:

Trolls under the bridge

Many parents and autistics choose April as a month to fully focus on autism as a cause. We post autism-related articles daily, and link to others we find enjoyable, valuable, or touching.

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But the more you post about the complexities and politics, and the pros and the cons, the more dissent you generate. Because autism is too complicated for you to please everyone, and some of the people you displease get REALLY displeased.

The more you post, the more trolls materialize. It can be emotionally and mentally draining. You want to get the word out, but they don't agree with your words or the way you use them.

Autism can require patience and an even keel. I stopped blogging about autism for probably a year just because I found the controversies and criticisms too enervating. It drained my joy, and I needed that positive energy to be a good dad.

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Too little awareness

Your average Joe only has enough attention span to digest one or two of the thousands of articles published about autism. Because of that, there is always the risk that the one thing he or she tunes in for is the wrong thing. I once had someone comment on my personal blog that autism was caused by "sporns" and that they just had to be flushed with orange juice in order to clean out the system. Cured!

(This is not a thing.)

There aren't a lot of consensus topics on autism, so to treat any one article, blog post, or even news story as autism gospel (well, except this one, obviously) can be worse than not learning anything at all.

The label itself

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I once read the work of a researcher who said that the biggest problem autism faced was its own label. Autism is a spectrum of conditions, but they all get lumped together under this one label.

That means that people watch Rain Man and think they can offer helpful advice. It means that companies can produce medications that ameliorate the symptoms in one child who has autism, but may actually exacerbate the symptoms of another. The autism label creates confusion where confusion already exists.

You may have heard of the saying, "If you've met one child with autism, you've met ONE child with autism." Every child is different and you can't project the experiences of one child onto another just because they share a label.

Campaign fatigue

What most people who work to foster autism awareness want is for the previously "unaware" to become aware. But too much of a good thing can mean that some of the most important messages get drowned out by sheer volume. After a full month of autism awareness, most people who have the luxury would probably tell you, "I don't want to hear another thing about autism for the rest of my life."

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Preaching to the choir

Before my youngest was diagnosed, I had read exactly zero articles on the topic of autism. Many of the people reading autism awareness posts are not the target audience. They're living the life. They're people who have autism or their caregivers. While it's comforting to know that someone is reading your stuff, it's hard to generate interest about issues that don’t impact the intended audience’s lives (as far as they know, at least).

For those of us who need you to be aware — so that our children can live happier, healthier lives — spreading "autism awareness" will always be a thing. And it's a good thing. Mostly.

I honestly am more than happy to put up with the well-meaning questions or suggestions, because it means that you actually care enough about my daughter or myself to have at least read an article, watched a video, or shared an infographic. The information might not mesh perfectly with my experiences, but it beats the hell out of angry stares and judgmental commentary in a crowded theater as your child melts down (yes, I've been there).

So, spread autism awareness this month. But do it knowing you could burn out. Do it knowing you might not reach your target audience. Do it knowing you will catch a little hell for it from someone at some point. Do it knowing that not everything you post will apply to someone else's experience. Do it responsibly.

Jim Walter is the author of Just a Lil Blog, where he chronicles his adventures as a single dad of two daughters, one of whom has autism. You can follow him on Twitter at @blogginglily.

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