My Thoughts & Journey with the Dual Diagnosis of Down Syndrome and Autism Spectrum Disorder
By: Kim Youngberg
Put a finger down if…
- you have a magnificent, extraordinary, & unique child
- you feel like the world’s best researcher, yet clueless at the same time
- there are days in your house that are amazingly great & days that are incredibly exhausting
- you know you’re a part of a great community but also feel isolated
- in your gut you feel like there’s “something more” going on with your sweet babe
If you’re familiar with this popular social media challenge or have a pre-teen/teen child you may have heard of this trend. While it can be used to compare yourself to others, my hope is that this specific example will help you to feel embraced as a parent to a child with that special something “extra”. Not just the extra chromosome, but the extra diagnosis of Autism Spectrum Disorder (ASD), bringing your child to have a ‘dual diagnosis’. Many parents suspect this diagnosis before the official one is given. I did with my son, Easton (or “E” for short).
I first took Easton to a neurologist at 2 years old. Being an educator in special education myself, I was certain that we would be leaving that office with an additional diagnosis, which would make #7 on the list. To my wondering surprise, he said Easton was “too social and engaged with human interaction” (despite E ruining his entire collection of spinning light up toys in that one 30 minute visit). While he had “markers” for being on the Spectrum, the doctor said the behaviors Easton presented with, were because of his Down Syndrome (DS).
A few years later, after many more of his teachers & therapists also agreed of a suspicion of ASD and him meeting eligibility for a school diagnosis of Educational Autism, I took Easton to a child psychiatrist at St. Louis Children’s hospital- Dr. Constantino. Before he even looked at the paperwork and rating scales, Dr. Constantino stated Easton most definitely has autistic tendencies. Receiving that diagnosis was a relief yet a whirlwind at the same time, because it opened up new doors for Easton.