When My Son With Autism and Down Syndrome Doesn't 'Fit' in Either Community

“You know time crawls on when you’re waiting for your song to start so dance alone to the beat of your heart.” —Fall Out Boy, “Phoenix”

Autism spectrum disorders (ASD) are known to occur in individuals with Down syndrome, and statistics show that ASD may be more common in people with Down syndrome than the general population. It’s hard to nail down, but a reasonable estimate, per the National Down Syndrome Society, of the incidence is 5 to 7 percent of the Down syndrome population having co-occurring ASD.

Of those people with co-occurring disorders, there’s a pretty clear description of the common presentation, which includes but isn’t limited to: frequent stimming, little interest in social interaction, and often the individual is nonverbal.

Suffice it to say, after reading about Down syndrome and ASD, I didn’t have any indication that Ben had autism in addition to Down syndrome. In fact, you could have knocked me out with a feather when we got his diagnosis. I got the book, “When Down Syndrome and Autism Intersect,” which further confused the matter by describing the standard presentation of DS-ASD, which was nothing like Ben.

It took me quite awhile to wrap my mind around the ASD diagnosis. In fact, it was at last year’s local Down Syndrome Association picnic that the reality hit home like a sledgehammer. Ben was disregulated and riding the meltdown train the whole time, and the difference between him and the rest of the people with Down syndrome at the gathering could not have been more obvious.

Ben is very social, in fact excessively so. What he lacks is reciprocity. I feel he’s far more characteristic of what used to be considered a Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) diagnosis.

Alas, Ben is an island. He doesn’t fit in the general Down syndrome community, nor does he fit in the DS-ASD community.

I certainly don’t know what it’s like parenting other children with co-occurring Down syndrome and ASD, but I have found that it can be awfully lonely. The resources are not designed for us, they don’t address our challenges. Ben is who he is, and I love him and all of his quirky individuality, but man would I love to find a kiddo with a similar presentation. I could just imagine sitting down to coffee with his or her parents and comparing stories, watching their eyes light up as we all realize what we have in common. We bypass the standard Down syndrome, ASD and DS-ASD resources, because none of them address our situation.

For now we do all right on our own. Ben has his own drummer, and he sure is cute marching to the beat on his own.

boy in tie-dye shirt playing with toy cars
Alethea’s son Ben with his toy cars.

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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