Finally, the stress rose to a crisis level, and Brian found his son in tears, after having locked himself in his room for several hours. It seemed he was struggling more than anyone knew. When pressed, he finally confided in his father that “...he really enjoyed the teachers and the classes but the busy halls and all the students were too much for him to handle.”
Brian asked his son why he had kept this to himself for so long, and was crestfallen to hear from his son: “Everyone was so proud of me that I didn’t want to disappoint you.“ When I read this, it hit me hard. There was a time I faced a similar transition, and it impacted me in much the same way as Brian described in his book.
The transition happened when I was heading into high school, and decided to move back with my mother in another state. I had no idea the challenges that I would face in the transition. Up until then I had done very well in school, and really didn't expect it to be a problem. It didn't even occur to me.
What I failed to consider was how much environmental factors contributed to my success. Right around six grade, my father remarried and we moved into my new stepmother's neighborhood. While it was in a suburb of a major city, it didn't have that feel. In many ways, it functioned as a very small town. Everyone knew each other. Especially, most people knew my stepmother's family as they had been deeply embedded in the community for years.
This extended to the schools. When I walked down the hall, everyone knew me and greeted me by name. Every teacher and every kid. If there was one that didn't know me personally, they at the very least knew an aunt, uncle, or cousin. They knew me by my relationships. I was one of “the tribe.”
The schools were relatively small. Because they didn't have the typical type of rigid infrastructure, I wasn't forced into a one-size-fits-all academic program. They were able tailor a program specifically to me, something which allowed me to thrive.
So, when I was planning the transition to my new life, academics was the least of my concerns. I thought I had that all figured out. My worries were more social ones. The reality was more the opposite.
The first challenge was the size of the school. While my previous schools had covered only a couple small townships, this school covered several large towns. Kids came from miles away, which meant buses. In this school, they didn't have standard school buses — they used the existing public transportation system, which proved problematic in and of itself.
The stress of my school transition started the first week when I got on the wrong bus, winding up in a town miles away. Fortunately, I had enough passes/money to be able to catch the right bus back to my neighborhood, after I finally found it. But, by that time it was after dark and my mother was understandably frantic. This set me up for stress, but was nothing compared to the future.
In the hallways, I was simply one face among thousands. With the exception of a few kids who had known me in grade school, I felt anonymous. When I was invisible, so were my struggles. No one knew me well enough to recognize the extent of them. Pair this with my sensory issues and the architecture of the school, you had a recipe for disaster.
It was built in a very institutional style, square and a few stories high. Every hall looked the same. This caused me to become frequently disoriented. This was made worse by my sensory issues. My troubles with proprioception, meant that it took all of my attention and energy to avoid bumping into another student. I couldn’t tell where my body was in space.
This drained my energy, making it harder to deal with the constant barrage of other sensory input, especially visual input. This meant that when I became disoriented, I couldn't read the numbers on classrooms and the lockers. I was, essentially, navigating the hallways blind.
To deal with this, I memorized each classroom’s spatial position as related to the corners of each hallway (5th from the end, on the outside), but I could never be sure I was in the right hallway. That was trial and error. I would have to circle the building, looking into each appropriately placed classroom, to determine if it was the right one. To find my locker, a similar process was required.
This was so time consuming that I had make tough decisions, so I stopped going to my locker. I simply stuffed my backpack with every textbook for every class of the day and lugged them around, all day, every day. Even with this concession, it was still impossible for me to find my way to my classroom in the break time allotted.
This meant I was constantly tardy, an offense some teachers would overlook, but others would not. In some classes, I found myself facing academic penalties for repeated tardiness. With those teachers, I tried to discuss my challenges, and to convey that it wasn’t willful, but this was hampered by lack of diagnosis. I didn’t have the proper language to convey what was happening.
My efforts had mixed success. This is how my previously excellent grades began to fall. And this is where pride became an issue. Academic success was the one major area that was the source of my own pride. Even more problematic, I had come to the conclusion that it was my parents’ as well.
I feared their reaction, but I am sure that they’d wonder why. They weren’t the types to berate me or punish me when I got a less-than-perfect grade. Yet I reacted as if they did. I had always attributed this to my own sensitive nature, but reading Brian's account makes me wonder if this is the case.
I find myself thinking of a TED talk I recently watched on the linguistic genius of babies. The talk itself was fascinating and deserves a post of its own — but what stood out to me was the concept of how they learn. The speaker, Patricia Kuhl, describes that babies learn language by taking statistics on the patterns of sounds that they hear from the people around them.
When I think about it, this is how I learned the social world as well. I observed patterns in how people behaved and drew conclusions from them. For many children praise and love become deeply intertwined. I was no exception. So, I learned to equate love with praise, and praise with performance.
Reading the book, I started to wonder if this dynamic might have a disproportionate effect to those of us on the spectrum. Think about the neurotypical ways of conveying emotion. What are they? Primarily nonverbal. Neurotypical people send feelings of love and appreciation in a look, a touch, and countless other ways that a neurotypical child may pick up readily, but we don’t.
Nonverbal cues are notoriously difficult for those of us on the spectrum to read, so what does that leave? What you say, and what you do. That's where praise and pride come in. If, like me, the child is unconsciously taking statistics on the verbal feedback they receive, what happens when the preponderance of this feedback is praise for performance?
I find myself wondering if this doesn’t point to a particularly disturbing potential downside to behavioral approaches. If you do 40 hours a week of intensive behavioral interventions, and praise is part of your positive reinforcement, what do their statistics look like at the end of that week? If the ratio of non-structured praise and acceptance to praise for performance is skewed towards performance, what does that say to them about love, if praise is one of their measures of it?
This is precisely the trap that caused me difficulties back in high school. When my struggling began to show in my grades, I was afraid to talk about it. Because of this, my stress continued to grow until a major crisis. That happened in my Algebra class.
This class became the focal point for my academic challenges, because of the teaching style of the teacher. In short, he had trouble maintaining order. Kids in his class would run wild, creating a sensory nightmare. The challenge this presented was reflected all too clearly in the D that I would finally receive in the class.
I knew that I was struggling, but it wasn't finally real to me until I got the fateful report card. When I did, I sat staring at it for a few minutes, then got up to speak to the teacher about it. I had been open with him from the beginning about my struggles in the classroom. He was sympathetic, but felt helpless as to what to do about it. He was as overwhelmed in the classroom as I was and had given up in frustration.
Holding the card, I stood up and opened my mouth to speak, but found that I couldn't. No sound came. Then I felt a strange sensation in my legs as my knees went weak, causing me to flop back into my chair. It felt like ants were crawling up and down my legs and the sensation was moving steadily upward. When it reached my hands, they began to tremble.
When it reached my face, my eyelids began to flutter erratically. This twitch spread to my entire face, causing all the tiny muscles in it to twitch and vibrate involuntarily. A crowd gathered, some in concern, others in morbid fascination. I heard a cacophony of whispers. “Oh, my God!” “Weird!” “Look at her face!” Humiliated and feeling like a circus freak, I had no choice but to simply sit there and wait it out.
When it subsided, my teacher escorted me out of the room to recover. I never had an explanation for exactly what happened. My doctors at the time were at a loss. To me, it was always absolutely clear that the trigger was extreme stress. The baseline stress had me on edge to start with, but the final trigger was the fear of losing my parents’ love.
In his book, Brian describes telling his son that it's "...important that you never feel you are responsible for making yourself unhappy in order to make others happy." This is a lesson I learned, too. We tend to think the consequences for such things are simply unhappiness, but in my case, I learned the consequences could be far greater.
What if my knees had given way when I was in the aisle instead of standing in front of a chair? What if the crisis itself had happened in a public place, like a bus stop? How vulnerable would I been then? At question was more than happiness, it was safety, too.
I can't help but wonder how many on spectrum have had similar experiences, and how we can prevent such pain. What do you think?
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Patricia Kuhl: The Linguistic Genius of Babies