My Daughters Are on Opposite Ends of the Down Syndrome Spectrum


Every single day I hear references to someone being on the spectrum. Being “on the spectrum” refers to a person having autism, but for a while now I’ve come to believe it might behoove the Down syndrome world to start talking in terms of a spectrum as well.

There are so many variations of how Down syndrome manifests itself in a person. Cognitive and physical abilities can be affected in differing degrees based on many factors. One significant factor is the many associated health conditions that individuals with Down syndrome have an increased risk of being born with or developing at some point in their lives. Some will have significant health concerns requiring surgery or other treatments, while others may only have minor issues common to Down syndrome.

Achieving certain life skills may come easier for some and yet may be unattainable to others just by the way their particular bodies reacted to the extra chromosome. All of the aforementioned factors can then be further compounded by additional diagnoses such as autism, sensory processing disorders and apraxia, just to name a few.

These extra diagnoses usually bring on additional and significant challenges which impact how the child or adult speaks, behaves, socializes and learns.

I’ve read many times how other parents who have a child with a dual diagnosis of Down syndrome and autism feel like they don’t fit in anymore at Down syndrome events or meetings. They believe there is too big of a difference between their child and other children who just have Down syndrome. They deal with things like bigger delays, complicated behaviors, lowered potential and intermittent or nonexistent stereotypical Down syndrome personality traits.

We recently attended the grand opening of a GiGi’s Playhouse near us and lasted all of about 15 minutes because the noise level and the crowd were so overwhelming to my daughter, Lily, who has both Down syndrome and autism. Call me paranoid, but I also sometimes sense a hint of fear from parents holding their cute, chromosomally enhanced babies when their gaze lands on Lily. Lily, who on this particular day is barely able to walk because she’s so busy trying to cover her ears, dodges bodies, averts her eyes and mutters nonsense while deeply cringing from the chaos of the grand opening party. Autism can be terrifying to people.

I’m on both sides of the coin. My other daughter, Dasha, just has Down syndrome, along with a few minor health issues that are common with Down syndrome. And then there’s Lily, with her numerous diagnoses stacked up to complicate all aspects of her life.

She has five: Down syndrome, congenital heart defect (repaired AV-canal), autism, a sensory processing disorder and Ehlers Danlos syndrome. I’m considering adding a sixth o, apraxia of speech, to the mix after seeing similarities between Lily and her brother who was just diagnosed.

I find myself struggling to fit into the Down syndrome world as the girls get older. Dasha seamlessly fits the mold, and I’m often saying she could be the poster child for someone with Down syndrome. But Lily doesn’t.

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Dasha
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Lily

It took our daughter Dasha coming home for me to see the differences between them. After adopting a child with Down syndrome who lived in an orphanage for the first 5 years of her life, one of our biggest concerns and fears was possible institutional effects. Institutional effects (abuse, neglect, little to no affection) on a child can often mirror autism traits. “Institutional autism” is what most people call it.

I remember reading books, blogs and emails about institutional autism symptoms before and after Dasha came home. Slowly, I came to the realization that Lily had many of them, yet Dasha, who was adopted, did not. After Dasha had been home a couple of years, I started embracing the idea of Down syndrome coexisting with autism in Lily. They’ve become intertwined, and I believe they help make her the unique person she is and was meant to be.

So you will now hear me say when discussing my daughters’ diagnoses that I have two girls and they are on completely opposites ends of the spectrum of Down syndrome. It’s OK that they are nothing alike, and it’s time to recognize the diversity in the Down syndrome population. We can’t just champion and promote the ones who are more verbal, more social, more successful or more like you than different.

Individuals with Down syndrome make up an amazingly colorful spectrum and they’re all equally beautiful inside and out.

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My girls giving their daddy some love.

A version of this post originally appeared on Our Version of Normal

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