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Celebrating What Matters During Autism Awareness Month

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My boy’s story is not every autistic person’s story. He has fewer challenges than some and more than others. That’s why I’m constantly reminding people that autism is a spectrum. I’m writing this because there are some voices in the autistic caregiving community, not any less valid than my own, that decry this time of year because they feel it celebrates the very thing that has “brought down” those they care for and led to serious physical, mental and behavioral impairment they find heartbreaking to watch.

All I can say to that is this: It’s not about celebrating their struggle. It’s about getting them what they need to lessen that struggle.

Of course autism can be difficult, and no adult or child should have to experience what many of our kids go through. But I believe the only way to keep hope alive and find the wherewithal to keep moving forward is to change how the larger part of the world thinks about autism.

You can’t separate autistics from autism. It’s part of who they are. It’s the operating system they are born with.

I wish with all my heart that my boy didn’t have to struggle, but part of the reason he does is because he’s trying to live in a world that isn’t made for him. The fact that autism is viewed as a disease and stigmatized doesn’t help. It leads to the harmful mindset that autism is completely without benefit and has to be eradicated.

That’s not going to happen, which makes me believe that all this viewpoint does is get in the way of encouraging society to concentrate on what will help — improving therapies, developing better diagnostic criteria and treatment for co-morbid conditions that can lead to more extreme behavioral issues, and better access to resources and services.

We celebrate them to try to get them the things they genuinely need to live better, healthier lives. Most importantly, we celebrate them to show them that they deserve to be celebrated. We celebrate so they will celebrate themselves. Their ability to grow and thrive is in part dictated by their self-image. If we don’t see the potential in them, they probably won’t see it either.

It’s not about ignoring reality or “putting on a happy face.” It’s about maintaining the most important survival tool there is: hope.

I don’t think the situation will change until the world’s mindset does. I understand others’ realities give them a different opinion, and that’s valid. Autism is not a “one size fits all” condition. It would be foolish to expect people to view it through the same lens. I’ll just speak my truth and respect others to do the same. I won’t agree, but I certainly won’t go hunting them down to attack them, either.

In the end, we all want the same thing: for our kids to live full, safe and healthy lives. I try to help with this in the small way I can by advocating for acceptance.

Getty image by evgenyatamanenko.

Originally published: April 22, 2019
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