Dr. Grauer's Column - Autism and Me (as a Teacher)

Autism and Me (as a Teacher)
Review of “Underestimated” by Handley and Handley

A parent who I adore and respect gave me a book on autism. (She gave me three, but I actually read one). It was called “Underestimated: An Autism Miracle”, written by J.B. Handley and his 17-year-old son Jamison Handley.

I have known many people on the autism spectrum and co-author Jamison is on the “harder,” more challenging, nonspeaker side of this spectrum. It is risky for me to write about this, since I am not an expert, and yet almost none of us are experts in this and we interact with people on this spectrum (or wonder if we’re on it) regularly. So, I’m going out on this limb and you can join me if you like, and even correct me in my efforts to understand better.

Autism is a “syndrome”, so we know it can mean a combination of symptoms, mixed and matched differently in each person diagnosed. In general, however, people who have this syndrome might appear to be living at least a little bit “in a culture of their own.” They might not seem to naturally access or express the latest social norms, the nuances of the “cool” group, the facial or body gestures you might expect from “typical” people. But that does not mean they are not cool!

As a result, many people who are on this spectrum can feel lonely or underestimated. All of us who have experienced social isolation understand these feelings. The fact that they often can’t find the gestures to express this isolation can be heartbreaking.

The “real” autism we hear about is the most serious kind some people have: they can’t speak well, they might have some compulsive-type mannerisms like “stimming”. Basic goals can be hard to express and so their dreams and life aspirations can be almost impossible for others, even close family members, to find and to know.

Here is the problem with that: just because we can’t access the dreams and aspirations of another, that does not mean they don’t have them! As a high school teacher, I will never stop learning this very same lesson from teens, who often are not ready to clarify their life dreams through language. As a teacher, if I assume the undecipherable efforts of my students to express life dreams means those students are oblivious or unintelligent, what a terrible teacher I would be. Maybe those teens are developing intuitions rather than rational, logical-sequential knowledge. Parents and teachers of all teens have this to learn from people on the spectrum.

This “real” (stronger and with more symptoms) autism was the prevailing aspect of Jamison Handley’s life, until he was taught a new, phenomenal technique for identifying letters on a board that enabled him to spell out his thoughts, for the first time in his life. For the first time in his 17 years, people got a peek at the inside of his deep and beautiful mind, and they were blown away.

For me as a teacher, the theme of all this is: if we are dealing with people who are not expressing what we expect or understand, do we all make critical judgements about them? Do we pretty much all assume their cognition is not there—just because we don’t see it? Yes, our brains are prediction machines. We are looking for the answers we expect. It reminds me of a lot of schooling: teachers hunting and pecking for the “right” answer and when they get it, well, that’s what being smart in school is—giving the answers we like most. 

“Teachers had long litanies of my deficits,” Jamison writes, but what teen has not felt that from time to time? “Everything has beauty, but not everyone sees it,” said Confucius. What if we presumed competence of all people we dealt with and taught, even if we did not see it, even if it seemed “locked in.” If we could do this, we could meet many people we have known for a while… for the first time.

Having a child or a student whose beauty is unacknowledged or misunderstood is heartbreaking on an epic level. As Handley and Handley note: “Having a place, outside of your home, where your child is truly accepted for who they are… is a truly rare thing.” Kids on the spectrum can teach us about this heartbreak, if we listen, or if we see, but what better wisdom could there ever be for teaching and parenting of all teens.

Aphasia, a possible autism syndrome symptom, is the inability to express speech, no matter how bad you want to say something. “All I’ve known is heartbreak,” Jamison Handley said at age 17 when, for the first time in his whole life he was given a technology that enabled him to express himself.

We have all grossly underestimated the population of nonspeakers, every bit as intelligent as everyone else but with their ideas trapped inside their own heads. Likewise, we write kids off every day in schools because they are not expressing what we believe they need to express. So much of listening skills are mere appearances. “I don’t care if you are listening, I just need you to act like you are listening” is what we seem to be saying.

Apraxia is another symptom that can be on the more serious side of the syndrome, and this is when your brain is somehow unable to communicate to your body what movements to make.

When overstimulated or “stimmed,” most people on the spectrum will express unusual mannerisms such as body movements or verbal noises. Sometimes they can’t make their body do what they need or want it to do. When he was at last able to express it, Jamison noted that much of this stimming was overwhelm and frustration. He was locked in and could not express even simple needs.

But it can happen to anyone. Simone Biles is considered the greatest Olympic champion in the history of gymnastics, but even she said, in this year’s Olympics, she felt a disconnect between her mind and body; her body was no longer doing what she wanted it to do. Gymnasts call it “the twisties”. She attributed it to overwhelming mental stress and pressure. Can you even imagine the stress and pressure of living with a disconnect like this for 17 years, as Jamison Handley did? As parents and teachers, let’s all learn from autism about the impact of stress, frustration, and failure to feel understood on all of us.

The universe, too, has enormous intelligence, and it does not speak English. And so it follows, as the experts have learned, those on the spectrum will be calmed when in nature—another thing parents and teachers of all teens have to learn from autism. It almost seems like kids with autism syndrome are barometers, hearing things we don’t hear, expressing things we can all learn to hear better. And I am not saying I hear it all, by a long shot.

This book came to me at the end of a tiring year. I had been corresponding with a technology contractor who had helped our school and had been fired by his boss despite obvious great talent. I did not have the heart to stop our correspondence, and knew something was not right, but did not know what. Then I got this:

Hi Stuart,
I want to thank you for being human with me this past week. You have no idea how many times I have been ignored over these months, and what a toll it has taken on my emotional wellbeing. This morning I woke up and have no energy left to move forward with inside. And no desire to fight anymore. I have seen too much nihilism now in how me and others with disabilities are treated that combats the belief in a light at the end of my tunnel.

I have gotten so frustrated with the autism community and I’m now 100% convinced that there is an active anti-autistic bias running through it when it comes to people who are autistic having any real positions of power and not just exploitative …

Imagine if you had a condition like the above, and for a couple of decades, your teachers just told you all you had to do is do more homework and try harder and “focus more” — that would solve things. What if they kept telling you, “just use those listening skills.” Imagine if you had a brain-body disconnect and your teachers responded by putting you in a behaviorist, punishment-reward system? Imagine if 80% of the time, you knew there was near-zero chance you would be able to express what you felt or thought? Of course, many of our teens feel this, and feel exposed and vulnerable like this. 

Alternatively, imagine you were a non-speaker with this disconnect on this spectrum, and you experienced an amazing group of open-minded educators who believed in your intelligence and worth? Or imagine if they noticed this disconnect and thought, “Let’s spend some time in nature?” 

How can we access the particular smarts of our children, the smarts we rarely notice, and show them we know it is there? This seems like our job.

“Quiet people have the loudest minds,” Jamison Handley quotes from Stephen Hawking. Quiet voice has nothing to do with quiet mind, or unable mind. In class, we call on the squeaky wheels with their hands chronically raised. We honor the verbal more than the quiet, as though their contributions were the “real” evidence of our success as teachers and parents. We leave quiet kids and even our loved ones in silos, what Jamison called “prisons of silence,” every day. We just don’t notice, or we just don’t listen. The Handleys write, "Many nonspeakers aren’t socially clueless. They are sensitive and generous. Why haven’t we known this?”

We are starting to know this. One kid on the spectrum wrote, we can “choose to see opportunity instead of obstacle.” The founding purpose of The Grauer School was and still is to give a voice to teens. The road there is sometimes frustrating or conflictual. I’m no expert on autism, but I know that kids on that spectrum raise the bar for us, call upon us to be more sensitive, more attuned, more caring. I am not suggesting that I or our School and faculty are equipped to provide the right secondary education for all learning styles and learners—I know autism can be tough to address. It’s just this: Everyone needs a voice. Everyone’s competence needs to be presumed to be ultimately discoverable. 

We are all voiceless, even the loud or articulate, until others partner actively with us in getting our thoughts and feelings across, not judged. Any time we ascribe much deficit to others for their syndromes and homework grades and irrational views, we can also question our own sensitivity and listening—and our own relationship with the ineffable regions of the mind where so much of the beauty lies. Here I am sitting behind my Head of School desk every day with my thoughts and agendas. And there you are with your eyes and gestures and words, and it’s good to remember I don’t know the half of them. For my part, I want to be a better listener.

All of us feel trapped inside, in a culture of our own from time to time, and all of us live for the beautiful moments of making real connections, of being received and loved, of finally breaking free. 

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