What I Learned About Inclusion from My Administrator with Tourette Syndrome
Updated: Jun 25, 2021
As I passed through the entrance of the school and walked down the hallway of the office of my next potential employer, I heard Mr. Cohen’s vocal tics off in the distance. My special education supervisor had mentioned that the assistant principal had Tourette Syndrome and while I have had brushes with people who have had the syndrome, I had never worked with someone so closely.
I took a seat in front of the principal and the assistant principal of Addison Elementary School and the interview commenced. Throughout the entire meeting, Mr. Cohen displayed a wide range of motor and vocal tics. Despite Brad’s unusual mannerisms, they didn’t impact the dialogue or the demeanor of either the principal or Mr. Cohen. It was easy for me to take my cues from them and proceed with a “business as usual” attitude and by the end of the talk, I didn’t give it a second thought. What did cross my mind was how fantastic it was to have the opportunity to work at a school where inclusion was not only something that was talked about but was lived (even in the front office). Spoiler alert: I got the job!
Vocal Tics and Stims are Distracting
Brad Cohen will be the first one to admit to you that his tics can be distracting. He has been making them since he was ten years old and was often ridiculed by his teachers and classmates for not being able to control them. Fortunately, this tribulation only strengthened his resolve and he committed to become a new kind of educator, entering into the very profession that let him down in the early stages of his Tourette Syndrome. After 24 elementary schools rejected his application for a teaching position, he secured a job at Mountain View Elementary School in Cobb County, Georgia. He wrote a book about his story, Front of the Class: How Tourette Syndrome Made Me the Teacher I Never Had and it won the Independent Publisher Book Award for Best Education Book for 2005. The book was later made into a Hallmark Hall of Fame TV movie Front of the Class.
Throughout his life, Brad was told that the uncontrollable noises and movements that he made would be too distracting for his co-workers, his students, and perhaps even his loved ones. Not unlike people with vocal or motor stims (the repetition of movements or sounds typically by people with autism), he was written off and was burdened with the curse of low expectations. As I began my first few weeks at Addison Elementary I was struck by the parallels between Brad’s Tourette Syndrome and the noises and movements of autistic students that I have worked with in the past and the present.
The Threat of Distraction Is Often an Excuse to Exclude
One of the biggest aha moments that I had this year was when I was discussing with my wife about working at a school where Mr. Cohen’s Tourette Syndrome was not hidden but something that was talked about from the very first day. During the first week of school, Mr. Cohen explains to the students why he makes certain noises and movements and tells them it is okay to ask him questions about it. In addition, his vocal and motor tics are seen and heard every morning when he does the announcements on the live simulcast throughout the school. They are evident during school assemblies, ceremonies, and staff meetings when everyone is expected to be quiet. They are unmistakable as he makes his way around the school visiting kids and teachers in their classrooms. Seeing how the students and staff have adapted to Mr. Cohen made me think how a similar familiarity happens when students with disabilities are included in general education. It may be weird at first but by the end of the year, it is just “business as usual”. How many times have students been removed from general education classrooms and put in self-contained classrooms because they are thought to be too distracting? It usually only has to be the threat of disturbance and not even the evidence of any that will cause the removal of a student. Furthermore, what does this tell us about what we think of self-contained classrooms as effective places to learn when we populate them with the most “distracting” students? Don’t those students deserve a distraction free environment for learning as well? The students and staff at Addison Elementary presume competence when we are confronted with who he is. We give him the benefit of the doubt and we take our cues from the people who have known him the longest. He has demystified Tourette Syndrome for us. What if we could do the same thing for autism? or any other disability for that matter?
Tourette Syndrome Is Involuntary. Stimming Is Self-Regulatory.
As I read some of the explanations of how tics are involuntary they remind me of how people with autism describe stimming.
“Tics are involuntary. They are in no way willful. All tics both motor and vocal are the result of a chemical imbalance in the brain. Persons with Parkinson’s Disease have slowed down movements because of a similar chemical imbalance. We would never accuse a person with Parkinson’s of being voluntary disruptive and we certainly would not punish them for these uncontrollable movements. Tourette Syndrome is no different. People with TS are sometimes able to suppress some symptoms, but frequently this requires extreme energy and attention and it only can be done for short periods of time. Also, typically when a person is expending so much energy into suppressing, they are unable to concentrate on anything else. Tics when suppressed will almost always worsen in the long run.” – via Tourette Association of America
What I find most interesting is the insight that trying to suppress tics not only increase their likelihood but at great emotional and psychological expense. This is analogous to how autistic individuals describe “passing”, or pretending not to be autistic.
“If you are the parent or guardian of a stimmy child, and your goal is to stop your child from stimming—to teach her to stop flapping her hands, or repeating her cat’s meows, or chewing on her shirt sleeves in the grocery store—know that you are aiming for an impossible standard.
Stimming is a valuable tool for autistics to self-regulate, self-sooth, and gain familiarity and control over their bodies and environments.
…if you keep your child from stimming, the stim will always come up in another (usually worse) way.
I find this mentality most common among what I call “anti-autism” parents or specialists. These are the people that say, “I love my child, but I hate my child’s autism.” They are usually well meaning (if misguided) parents who only want to spare their child a difficult life.
But autism is not like depression, anorexia nervosa, or PTSD. Autism is not the demon we should be fighting. The true demons are disability, anxiety, and misery.” – Kirsten Lindsmith
Distractions Are in the Eye (or Ear) of the Beholder
We define, as a society, what we believe is acceptable or unacceptable behavior. It is based on these criteria that we claim any impact (positive or negative) on the environment, whether that is a classroom or a movie theater. We also have the opportunity to educate the people around us as to the difference and diversity of human beings. Teaching at a place where Mr. Cohen’s Tourette Syndrome is not only tolerated but accepted has shown me that it is possible for inclusion to become a mindset for a school. How far-fetched would it be for us to do the same thing for students (or even adults) on the autism spectrum? An attitude of inclusion needs to start at the top (our administrators and district leaders). How fortunate am I to live that out on a day to day basis.
Tim Villegas is the Director of Communications for MCIE, Editor-in-Chief of Think Inclusive, and the host of the Think Inclusive Podcast. Follow him on Twitter @TheRealTimVegas.