Understanding the Spectrum: Severity of Down Syndrome

This morning I was going about my usual business, sipping coffee, reading blogs, and wasting time on Facebook when I came across an interesting post called “My Place on the Spectrum” by Jen on Organized Babble. Jen is a speech pathologist who works with children with autism. In talking about autism and her own identity Jen says,

“I firmly, truly, in my core, believe in what so many of us think and know: that autism is a spectrum. And it includes neurotypicals*. NTs and autistics are not fundamentally different – they just fall on different parts of the spectrum.”

This really got me thinking. We all share the spectrum as people, as humans. Usually when I think of a spectrum my mind conjures up a bell curve. This morning I envisioned a different spectrum. A rainbow.

CC Attributed Baldur McQueen
CC Attributed Baldur McQueen

My last post was about the questions graduate students ask me about DS. Interestingly enough the very first question submitted was this,

“I know that there is a spectrum of severity for someone who has Down syndrome. What are the landmarks or key elements that are common for each level?”

This question brings me back to the bell curve. Low functioning to the left; high functioning to the right. Perhaps without even meaning to do so we’ve associated degrees of intellect with value judgements. High functioning = Good; Low functioning = Bad. If you’re in an intellectually competitive environment then average isn’t cutting it either. It’s excellence or failure, with very little tolerance for anything other than perfection.

Bell Curve Grading Scale

I recognize the importance of understanding how a child learns and interacts with others; however, I see this as a very different type of question than the high-functioning/low-functioning inquiry. To illustrate this I’d like you to read the following descriptions and ask you to judge, “Is this child or adult with DS high-functioning or low-functioning?”

  • An 11-year-old boy who is non-verbal. He reads at a 2nd grade level and uses a communication device
  • A 3-year-old girl who combines words together clearly, but has self-injurious behaviors (bangs her head, scratches her face)
  • A 25-year-old man who can’t balance a check book. He is always on-time for work and remembers every family members birthday
  • A 48-year-old woman who has been in a nursing home since her parents died 20 years ago. She communicates with speech that is poorly understood without staff knowing the context

People are more than their intellectual ability, more than their functioning. So much more. Yes, in medicine and academics we like to fit people into neat categories and this has its place. However, as society we need to ask ourselves, “Is this question (of functioning) useful for members of our community?” What if we start thinking of our skills and experiences like a rainbow instead of a bell curve?

Yes, dear student, there is a spectrum of skill and ability among people with DS. A wide, beautiful spectrum and it’s the same one we’re on.

This Friday is World Down Syndrome Day and I will speak on Creating a Foundation for Successful Communication for the 321 eConference. Join me at 4 PM EST to learn about the importance of understanding how your child communicates and ways to encourage language at home.

*neurotypical is a term used to describe people who are neurologically or brain typical; AKA people without a diagnosis of autism.

4 thoughts on “Understanding the Spectrum: Severity of Down Syndrome”

  1. Hi there! I wanted to reach out to you and ask if I could feature your blogpost ” Understanding the Spectrum: Severity of Down Syndrome ” in the next issue of Special Miracles.

    My name is Sabrina Moyer and I am the founder of the online platform known as Special Miracles which was inspired by my son Colton who happened to be born with an extra chromosome of awesomeness! I recently launched an online/digital magazine that features inspirational stories and posts from our 180K+ members.

    I came across your post and thought it was great! I would love to include it in the next issue (May) and I will have links back to your blog etc…If that is ok with you can you also email me some hi res images to use as well? sabrina@specialmiracles.com Thank you so much 😉

  2. Love this, Jenn. Wait til you read my DS Press article. It’s along the same lines…

  3. nice. I like the idea of the rainbow. You may be “high functioning” on one band and lower on another band. It truly is a multi-level spectrum.

Comments are closed.