Editor’s Note: This post is written by nonspeaker Nick Barry and introduced by his teacher, Lisa Mihalich Quinn.
Lisa Mihalich Quinn
When Nick asked me to introduce this blog post, my initial response was to tell him that we should let his voice tell this story. It is, after all, his story. He insisted, though, and so I’m going to try to frame his narrative while still putting the focus on his voice.
A quick google search for “supports for autism” returns a list pages long, full of organizations and information sources. The supports generally fall into a few categories: education, communication, health and diet, and behavior.
You can find plenty of information about Applied Behavior Analysis (ABA). Speech therapy ranks right up there, too. There are sites discussing biomedical interventions. IEPs and school services also have their place.
One thing that is notably missing – now that I know what I’m looking for – is information about mental health supports for nonspeaking autistic people, specifically psychotherapy. I’m not talking about medication management; I’m talking about talk therapy.
Talk therapy? For someone who doesn’t “talk?” Yes. Isn’t the purpose of talk therapy to help people identify issues that cause emotional distress? Why would we assume that people who can’t speak with a voice don’t experience emotional distress? If anything, it seems these are the people who need therapy the most.
It’s long been acknowledged that anxiety and autism coexist for many people. When we experience anxiety, it affects our bodies and our minds. Adrenaline and cortisol kick in and our heart rates increase. It’s been shown that anxiety goes into our smooth muscles (increasing things like stomach aches, loose stools, hypertension, migraines, and loss of bladder control) and into our striated muscles (shown by clenching hands, tension in arms, tension in your neck and shoulders).
When we’re experiencing intense anxiety, the blood flow to the brain predominantly goes to the emotional part of the brain. It cuts off the ability to think logically and use the cognitive parts of our minds.
In addition to all these things that everyone who experiences anxiety may notice, one psychologist we work with tells us autistic people have demonstrated that on top of the physical manifestations in their bodies and minds, they often deal with powerful memories of times they’ve lost control, been unable to communicate, or have been mistreated by others. Anxiety, in these cases, can be a traumatic response.
In my experience, talk therapy– especially for those who don’t “talk” in the traditional sense– is the missing link. In my work at Reach Every Voice, I’ve worked with dozens of nonsepaking or minimally speaking autistic individuals to develop the skills to communicate by pointing to one letter at a time on a keyboard or letterboard.
This transformation is the result of so much hard work by everyone involved, and while it can be life changing to be able to express things that you never could before, it “isn’t a master fix,” as Nick says.
He points out that typing alone could not have helped with his anxiety in the way that he so desperately needed. He writes, “What makes the difference between me angrily yelling my displeasure and starting to actually investigate and process this rage is the work I do with a therapist.”
My experiences watching Nick and other students we support at Reach Every Voice working with a therapist have made me a believer and a loud champion of the necessity of delving into the emotions buried under the surface with someone specifically trained for that work.
Now let me pass the mic to the one we should be listening to and learning from the most, my intrepid student, Nick Barry.
Therapy has changed my life. The difference is astounding. Since I began working with someone about a year ago, I have turned the tables on my anxiety. In this short time, we deeply explored causes of decades-long frustrations and agony that I held inside.
You would look at my face and see a smiling guy who looks happy. You would listen to my laugh and think I seem happy. My too-loud inner voice was far from happy.
Imagine twenty years of built-up negative thoughts that I could never share with anyone. We so often believe our hateful self-talk unless we share it, and the people we love tell us it is not true. Imagine not being able to work your mouth to say anything beyond snippets of your most-watched tv shows.
How many long years were there rolled up around my soul, each one a tight rubber band waiting to snap? Picture me at the center, a balled up tiny human strangled by the unspoken worries and ingrained terrible self-image. Until very recently, I gave up hope that I would ever take off even a single layer of these stressors.
In my present reality, I experience the joys of getting to do the things I love like writing and woodworking. That would not have been possible if I had not learned to type my thoughts.
But I also experience the depths of depression about how much assistance I need to live my life. Typing alone would not have helped with this. What makes the difference between me angrily yelling my displeasure and starting to actually investigate and process this rage is the work I do with a therapist.
It’s a dance with many partners. Mom to formalize all the arranging of schedules. The lovely therapist herself. One communication partner to support me in sessions. Another to best help me take action on saying the always-hard-but-important things to my mom.
For twenty years my family made the best decisions for me that they could. Now, I not only have the skill to say what I need but also the confidence to make my voice heard.