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 are known to occur in individuals with Down, and statistics show that ASD is more common in Down syndrome than the general population. It’s hard to nail down, but a reasonable estimate, per the NDSS, of the incidence is 5-7% of the Down syndrome population having co-occurring ASD. I would estimate that number to be on the low side.
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 sledge hammer. 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. He’s far more characteristic of what used to be considered a 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 do know that it’s awfully lonely parenting our little man. The resources are not designed for us, they don’t address our challenges. Ben is who he is, and I love him in 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 alright on our own. Ben has his own drummer, and he sure is cute marching to the beat on his own.