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Our Own Drummer 

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.  

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. 

Ben with his cars

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. 

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6 thoughts on “Our Own Drummer 

  1. I hope you will find that other family someday. It took us 15 years to meet others with our daughter’s syndrome. It felt lonely but by the time we met others, I knew my girl and didn’t really compare her to others and didn’t look into the older individuals to try and see who she would become… She was Emily, just like Ben, she’s on her own path, doing her own thing at her own rythm.

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  2. Hi! I’d love to hear more about Ben Bc I feel so similarly. On all counts! My daughter is 9 and has a dual Dx, but she doesn’t present like other kiddos with these Dxes. She is her own little person, for sure!

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  3. Enjoyed your blog and totally can relate. Also on the blog called Stuck. Please feel free to message me about writing your memoir. I am nearing the completion of mine and would be interested in where you are at. Best, Teresa

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  4. Hi Alethea, I stumbled upon your blog on Facebook from the Mighty. I read this post and and went through and read your other entries as well. My son, Nicholas, is 11 and has co-occurring DS and Autism. He was only given the dual diagnosis this past fall. I too was given the same book. If I pick and choose, some things from the book make sense, while in other ways, he does seem to be his own unique, lovable self. Can you explain what you mean by him lacking reciprocity? I’m not familiar with PDD-NOS. I’ll continue following you, as I’d love to hear more about your adventures with Ben.

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    1. When I say he lacks reciprocity it means that he doesn’t care if he gets positive, negative or no reaction, he will just keep attempting interacting. He also has no notion that anything other than his needs matter. Whether you’re busy or he’s interrupting or you’re sleeping, none of that matters, if he decides he wants to interact he does.

      PDD-NOS is a now discarded term for someone with a several characteristics of autism, but doesn’t meet the full diagnostic criteria.

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