“I felt very strongly about writing you today, to give a little extra insight on the disconnected links that were supposed to make my body and brain work together in harmony. But, they don’t and that’s okay.”
“My brain, which is much like yours, knows what it wants and how to make that clear. My body, which is much like a drunken almost six foot toddler, resists.”
These are the words of Gordy, a teenager on the autism spectrum.
He typed a letter that has been widely shared across the internet about what it’s like to be a “non-speaking” individual with ASD. I am so glad I found this letter. It reminded me of two main things I need to keep in mind as a clinician working primarily with individuals on the autism spectrum:
- The terms “high functioning” and “low functioning” don’t accurately paint the full picture of how an individual is functioning in the world.
- It is vital that we presume competence, always.
Let’s dig a little deeper with the terms “high” and “low functioning” that I often hear people use to describe individuals on the spectrum.
I can certainly understand the need to find a term to quickly describe an individual to another professional. But there are so many factors and intricacies to how an individual functions that one broad term may not accurately paint the entire picture.
In fact, I’m sure it doesn’t
An individual may be “high functioning” in gross motor skills and can walk, run, jump, and climb. But, they may be “low functioning” in the sense that they don’t use words to communicate.
I haven’t found a term that I like to replace high and low functioning, but maybe we don’t need one at all. What do you think about that?
The second takeaway from the article is to presume competence in all situations.
I have had multiple clients who did not use words to communicate and didn’t give any indication that they were taking in what was going on in the session.
But they would follow all my instructions during an intervention.
Or they would match my rhythm on the drum and imitate a rhythmic pattern perfectly.
Or they would write simply profound lyrics during a songwriting experience.
The more I learn about autism – from the perspective of individuals with autism – the more my clinical skills evolve and change to become (I hope!) more effective.
So I truly hope you’ll take the time to read Gordy’s letter and a few posts I’ve written about how to improve your practice with individuals with ASD here (Part 1) and here (Part 2).
Any other suggestions or thoughts? Leave them in a comment below.
Nice! I also do not like or use the “functioning” terminology for adults with whom I work. I believe the terminology is degrading, and dehumanizes the individual. I prefer terminology around specific diagnosis, specific and descriptive behavioral terminology, speaking on the stages of dementia, and using different grades of “responsiveness” instead.
I think all in all, the use of “high” or “low” functioning is just going out of style. Thanks for writing this Amy =)
Hi Kat, thanks for sharing your thoughts! I like your ideas about using specific behavioral terminology and different degrees of “responsiveness.” I hope we’ll be able to continue this conversation among the music therapy community to share ideas on how to be most sensitive to our clients and their families. :)