By Kimberly Gerry Tucker
School Avoidance and Educational Challenges
I was 16. I told my father I was quitting school. He punched a hole in the wall and said, “Go ahead. Be a dummy like me!” My street-smart father was no dummy. He was an easy-going Korean War veteran; supporting my mother and I with his job at the factory. Given a GI Bill for college, he never used it- probably hesitant due to undiagnosed dyslexia. He never raised his voice, so the wall-punching shocked me. He had high hopes for me. I quit anyway. I never graduated with the ‘class of 1982.’ I earned my GED through Night School, an environment somewhat more tolerable. Even there, I endured an instructor who paused in front of me, in awestruck wonder. “It’s like she’s an unemotional sphynx,” he said. I took the remark in stride; used to hearing these things. In grade school, I had to stare into the pattern of the radiators; to tune out sounds of shuffling, rolling eyes (I could hear them move), screeching chairs, and laughter. Kids waved their hands in front of me: “Yoo-hoo! Is anybody in there?”
My School Avoidance started in 5th grade. Differences between myself and peers became a chasm. When I stayed home from school I followed a detailed plan I wrote up: 7:30 am: Toast. 8:00 am: Watch Flintstones. 8:30: Wash hair. (You get the idea.) My schedule was detailed; every moment logged out up until my parents returned from work. Blissful unchanging routine. By age 14, I was evaluated. I looked at inkblots, created stories out of picture cards. They came up with anxiety and “flat mood state.” I was finally diagnosed correctly in 1999 when I was 35. In retrospect, I know Autism wasn’t really on the radar for most clinicians back then. I wanted things to be different for my son. We’d prompt him to order for himself at restaurants. We let him know ahead of time about changes, so he’d know what to expect. I jotted upcoming events on a calendar. I played on his strengths. He often took apart our good gadgets; so he could make robots from the parts. We picked up old clocks and radios and encouraged him to dissect those. He never did develop School Avoidance like me, but it was clear he was ‘different.’
My son handled overload differently than me: he meowed. If a child got close, he hissed. We didn’t even own a cat at the time! The Kindergarten teacher yelled a lot at him. Like me, he was in the top 5% of the class academically. Our methods to tune out overstimulation were successful, yes. We got our work done. We’d be passed to the next grade without our other difficulties ever being addressed. At what cost did people like my son and I ‘keep up’ our functioning? What toll was taken on our inner lives to try and ‘pass’ as we navigated school like an alien dropped into a different culture? In high school, my son was diagnosed High Functioning Autistic. I went in for evaluation and it came back the same. We both had Selective Mutism too. People like he and I “mask.” There’s a movement now about “ripping off the mask.” If you blend with others (wear their masks) you draw less attention. It’s a survival mechanism. The chameleon blends into surroundings for survival. With autism, it’s a manual painting of the chameleon. “Going against one’s true self” takes a toll. My six foot tall son burst through the door every day after school. His pent-up restraint was released in his safe place, at home. He went for the coffee table; paced around it ten minutes or so, taking sharp right angles and emitting moose noises. With that having been released, he could function again and have sorely needed downtime.
Individualized Education Programs: it really does take a village
The Individualized Education Program (IEP) meetings, which he’d been having since Preschool, took on new meaning. Now I knew what made us ‘different’, I could be proactive. I advocated for him, the way I’d wished someone might have advocated for me. I found an advocate to bring with me to meetings; per recommendation of a local autistic peer in an online support group. These meetings were not easy. The high school corridor’s buzzer sounded suddenly on my way to the office for a meeting. Teens rocketed from doors all around and assaulted the halls with eyes, colors, closeness, smells, noises. I kept walking. Safe in the office, I was struck with why my son burst through the door following his school day, and paced and made noises of distress. When I used to come home from school, I’d go into a closet, close the door, and study my rocks; lit by a sole lamp. The inner workings between my son and I were similar. Our behaviorisms and the way we dealt with overload- quite different. Inside the office, I sat down; waited for the meeting to start. A copy machine’s odor was pervasive and almost sent me running. The tube lights on the ceiling flickered; buzzed on a low frequency. Finally seated around the table, with teachers stating their ideas on how to “deal with” my son, I was as close to the door as possible; my advocate beside me. With selective mutism you can lose your voice. My advocate Dan, said quietly to me, “Take this pen. You’ve got the notes. You know the changes we want to support your son, you’re one of the brave. If you can’t speak, hand me the pen; I’ll speak for you.” I never had to hand him the pen.
An IEP should be a team, never confrontational, never giving the impression it’s an “Us against Them” situation.
An IEP should be a team, never confrontational, never giving the impression it’s an “Us against Them” situation. We had great ideas to implement. We started with the school bus; teaching my son to create Sensory Blocks. He could put his backpack on the seat beside him, to discourage close proximity, to someone who might startlingly take the seat right beside him, triggering a Touch Aversive reaction. He started bringing headphones on the bus. Even if they weren’t connected to anything, the plugs in his ears gave the impression he wasn’t going to hear if anyone spoke to him. This gave him some control over Exposure Anxiety, expectation of spontaneous speech. He learned to divert his gaze out bus window. Now my son wasn’t acting like prey on the bus. His eyes weren’t darting; giving the impression he was a cornered animal. He had more control over his environment! The anxiety didn’t have to start building the moment he sat on the bus. It was a start. Now, how to address oral reports? Gym class?
He needed Transition Time. He was given permission to leave class 5 minutes early, cutting down on the onslaught of hall crowds. He was granted use of a quiet room, where he could quietly eat lunch or decompress. We were building vents, in a sense, to allow pent up pressure to hiss out throughout his day. He recorded oral reports at home; and played them to the class. This showed a side of him that was articulate, calm, poised. In gym, my son did not ‘get’ the rules. He’d stayed back in preschool for motor coordination not being on level with his peers. It was arranged he could go to the weight room; challenge his body in ways that weren’t competitive. He could use the weights, do sit-ups, run in place.
Individualized Accommodations and Advocacy
Accommodations in the school environment look different for every child. There were times my advocate and I had to push, to drive home just how important tailoring an environment to his challenges was. This was done without aggression or raised voices. My parents taught me about that sort of thing: when to “tip over the table,” I call it, although I don’t mean that literally. It wasn’t easy; but it was worth the gentle pushing. The amount of times he was bursting in through the door after a day at school like a firecracker, gradually lessened and disappeared entirely! There are many ways to help an autistic person navigate school, so long as one is doing so from a sincere desire to help and understand.
My mother brought me to Middle School a month before school started for a special tour with another student and a teacher. Sadly, not enough changes were put in place for my ultimate school success; but touring the school when it was empty, lessened a little trepidation, allowed me to take notes. Important for me personally, because I still get lost in buildings! Other things that may have helped me? Having advance knowledge of sudden fire drills or assemblies. Maybe I could’ve had a safe person: a sympathetic student to turn to or accompany me, to keep an eye out for bullying. If the teachers had known my Special Interests beforehand, those interests could’ve been incorporated into lessons. This draws an autistic child into class discussion. That doesn’t involve a lot of extra time on the part of the teacher, just an awareness of what the autistic child is passionate about and using that as a helpful tool.
Teachers should know that stress may not be apparent on the autistic child’s face. Some autistic people are wired not to show discomfort until it all bursts out at once. Expression is not a true indicator of stress until the autistic child (or adult!) is ready to break. The mask serves its purpose in blending. Until it doesn’t. There should be someone at every school who specializes in understanding autistic people. Maybe this person could’ve kept my books for me in a designated room to retrieve when I changed classes, instead of me having to remember where my locker was, and my padlock combination, when I was already cognitively low. Maybe I could’ve even been a card-carrying member of selective mutism. What I mean is, having less Expectation of Speech. I could’ve shown a card: “Sometimes I don’t speak. Now is one of those times.” I knew Dan’s pen was there for example; but didn’t have to use it. Having classroom speakers or books available on day one of the school year would educate the other children on why their classmate is different. When I belonged to ANI (Autistic Network International) in the 90s they would hold autistic- friendly retreats. Jim Sinclair started a badge-wearing procedure. The autistic person wore a green badge if they felt like interacting, red if they wished to not be approached, yellow if they wished to be the one who initiated conversation, etc.
I recently had the pleasure of consulting with college student Amanda Domenici, who was enrolled in Prof. Elizabeth Stringer-Keefe’s class called Technology in Communication & Curriculum. She said I was “a perfect expert to collaborate with on her assistive technology plan” for a student who has a diagnosis of selective mutism. I gave her insights she deemed useful to help lessen the impact of a particular child’s selective mutism which was getting in the way of her learning process.
This is how I come full circle, by advocating. You’ve probably read in a cheesy meme, it’s ‘’not the negative things that happen to you in life that define who you are, it’s how you react to them that matters.’’ That motto is from a Greek philosopher called Epictetus. I hope that being vulnerable enough to share my own and my son’s personal experiences with developmental differences and school, has at least sparked some ideas for you to help your own child navigate these challenging situations. Knowledge is a powerful ally, and so is teamwork.
Kimberly Gerry Tucker blogs at ravenambition.wordpress.com. She has written about selective mutism and autism experience in her book Under The Banana Moon (living, loving, loss and aspergers/selective mutism). Kimberly has also contributed chapters to Carl Sutton and Cheryl Forrester’s book on selective mutism called “Selective Mutism In Our Own Words: Experiences in Childhood and Adulthood “. She is on board of directors at Art of Autism and is seeking submissions to PODS (people of diversity, speaking) at [email protected]
Kimberly Gerry Tucker is the author of the memoir “Under The Banana Moon”, and a professional artist whose work was featured on the cover of the Art Of Autism book “Shattering Myths.” She gives panel talks, book signings, and does collage workshops and presentations. She also works part-time as a software tester, and is working to become an Accessibility Tester.