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The Joy of Autism

J&J mom Carrie parents Joseph, who has Asperger’s Syndrome. She shares today that there is a joy in parenting an autistic child that she never could have imagined.
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“Joy” isn’t a word that often springs to mind in the context of autism. “Challenge” is a far more likely noun. And adjective. As in: “The days are very challenging”; “Getting the right level of support for my son’s needs is challenging”; and “Interactions with his previous school presented great challenges.” If I had a dollar for every time I’ve used some variation of the word “challenge” over the past four years, since my son Joseph’s diagnosis with Asperger’s Syndrome, I could buy a tropical island somewhere – or pay for some of that support that is so difficult to obtain.

There are challenges you would never imagine. Grocery shopping, for example. Parents with neuro-typical children find grocery shopping with their kids to be trying, without a doubt. But have they had to make an action plan, with detail down to the minute, to simply buy bananas? Have they had to keep reviewing that plan with their child every 10 minutes to help him feel safe? Or come up with contingencies for if a stranger gets “too close,” or the lights that day are “too bright,” or someone nearby laughs? Because if someone laughs, Joseph will think it’s at him and he will yell at that person to stop. Because if it’s too bright, he will scream in pain until I get sunglasses on him to stop the assault of the light on his eyes. Because if a fellow shopper gets too close, he will think that person means me harm and he will scream, lash out, flap, and completely melt down. His heart will thump; he’ll get sweaty and out of breath. All so I can buy him bananas.

So, yes, there are challenges. Far too numerous to list, far too overwhelming to see all in one place.

Given these challenges, folks might think that I would gladly cure autism, or find a treatment that would eradicate its effects, like taking a pill for blood pressure or injecting insulin for diabetes. They couldn’t be further from the truth. The biggest secret about autism is that it isn’t a disease. It isn’t something that means a shortened lifespan, or a danger to his health.

Autism is my son.

It is as much a part of Joseph as are his gorgeous brown eyes, his amazing smile and his warm hugs. It is what gives him his unique sense of humor, his insightful perspective on the world, his endless curiosity. How could I want to eradicate, or “cure,” any of that?

Without autism, he wouldn’t be Joseph.

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And that’s where the joy comes in. It is in Joseph’s remarkable, loving spirit, and in every small success he achieves, like shopping for bananas without breaking down. All those challenges we face only intensify the joy of every “perfect” moment. When he makes it through a whole day/week/month(!) at school without melting down, without feeling ignored, isolated and friendless; when he feels safe enough to be his whole self, without holding in the parts that don’t seem to match what others want; when he lets me hug him and kiss him (always with warning; unexpected physical contact hurts him)…well, my cup runneth over.

Truly, there is so much joy to be found in autism.

Carrie Watts has worked at LifeScan Scotland for almost as long as she’s lived in Inverness. She’s currently a Content Labeling Specialist in the Global Packaging & Labeling Department. Carrie is a native Upstate New Yorker and the mommy of two amazing, bright and terribly exhausting boys.

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