From Data to Dignity: What We Can Learn About Down Syndrome and Development By: Michelle Zeman

Did you know that there’s research out there that children with Down Syndrome meet developmental milestones much later than neurotypical children? 

According to a 2024 study done by the American Academy of Pediatrics, there was a significant difference in developmental progress. In the study, 842 children and adults with Down syndrome enrolled in the Boston Children’s Hospital Down Syndrome Program were evaluated. It was reported that on average, most children with Down Syndrome walk without help by 4.5 years old, follow one-step directions (e.g., “come here”, “pick up _____”, etc.) by 5.5 years old, and drink from an open-cup without any assistance at 12 years old. In addition, it was reported that by their teenage years, 75% of children with Down Syndrome can follow two-step directions and use at least 50 words, signs, or pictures.

By comparison, the average for neurotypical children meeting these milestones is when they are 2.5 years old.

Now, if you know me, you know that I was diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified (a subtype of Autism). You also know that I am a Behavior Analyst by trade. In my day-to-day, I have worked with a variety of people with intellectual, developmental, and physical disabilities. I’ve also worked with a couple of clients who have Down Syndrome in my career, and like Autism, their abilities and skills varied. 

I also have a couple of friends who have Down Syndrome. They are brilliant and have a variety of skills that I wish I could possess. For instance, one of my friends with Down Syndrome is talented at Zumba - not once have I danced a Zumba move (much less participated in a class) in my entire life. 

It just goes to show that even though research is out there to support that there are delays in milestones for people with Down Syndrome, that doesn’t mean that all people with Down Syndrome will necessarily have this significant delay in skills. Some skills are developed sooner than others. That being said, it’s essential to treat people still - whether they have Down Syndrome or any other disability - with dignity, respect, and equity. 

I want to end this article with this: when you meet one person with Down Syndrome, you meet one person with Down Syndrome. Each individual has their own unique strengths, challenges, and stories to tell. When we recognize that, we create space for true inclusion, respect, and representation.