My Elementary School Experience as an Undiagnosed Autistic, Neurodiversity in the Classroom
Like me, C. is hyper-sensory, hyper-empathic, and hyper-anxious. This narrative springs from that common ground. I'll make this about me because I own my story, but I don't own C.'s.
When I was in 5th grade, as C. is now, I did a lot of crying. Crying meltdowns in bathrooms are what I remember most about fifth grade and elementary school.
I also remember how I was remedialized and r-worded for not being able to read despite being hyperlexic. One day, as a frustrated teacher was trying to get me to read aloud, I inhaled against the overwhelm and the suffocating anxiety and briskly and quietly read through the entire book. I concluded with a quiet, “Can I go now?”
The spoken word is not my medium. Auditory processing difficulties make ingesting speech difficult. My working memory for verbal speech is limited. On the output side, speaking aloud swells my nerves with anxiety and overwhelm. I was presumed incompetent because I wouldn't and couldn't read aloud.
After finally demonstrating my reading ability, my trajectory changed from resource-roomed and r-worded to savant who could read anything. I'd read my mom’s mystery novels and write wise-cracking crime noir, complete with bad puns. I wish I had a laptop, a text editor, and backchannels back then.
School was still an anxious sensory hell after I became the pet weird “gifted” (a word that papered over silent struggle and quiet drowning), but it became a lot better. Recognizing my strengths instead of remediating my weaknesses made a difference. Turns out, I was a deficit model remediation machine so long as everything was in writing. Since our society conflates eye-reading with intelligence, I gained, mostly, the presumption of competence initially denied.
My framing and treatment would shift between r-word and savant depending on the understanding and outlook of the person imposing the narrative, on how much speaking was required, on how hostile the environment was to my constantly overwhelmed neurology, and on if I could hold off meltdown until I got home to the sanctuary of small, quiet spaces: my closet, underneath my bed, or my sarcophagal blanket forts.
As his mom, I know there would have been telltale signs throughout the day. But they’re small clues that can be easily missed, as he would have been largely compliant, so therefore no one would have realized there was any problem. But I know as the day progressed, his complexion would have become paler as the energy sapped out of him with each passing hour.
He may have struggled to eat his lunch due to high anxiety. A nervous giggle would have squeaked out when his teachers tried to speak to him. He would have put his head down on the table during lessons or possibly rocked back and forward on his chair to calm himself down. And as the pressure mounted and the clock ticked toward home time, there may have even been some finger picking and sleeve chewing.
My son shows these signs of stress through his body language and gestures. He can’t always communicate his needs verbally, so they can get missed.
The can be a common challenge facing many children on the autism spectrum. Some children are able to contain their feelings all day at school, with the teacher blissfully unaware there’s a problem. However, the stress hormones are slowly building and building inside. This creates a situation that can put incredible pressure on families— especially if teachers don’t understand or believe what the parents are telling them. So let’s think about it this way for a minute…
Source: ‘Delayed Effect’: Child With Autism Melts Down at Home, Not at School | The Mighty
I didn't have the vocabulary to understand myself and what I was going through. Nor did my family, school, or community.
That vocabulary exists now thanks to autistic, ADHD, and disabled adults and the networks that connect us. Schools, families, healthcare, and society don't yet know the lingo. Let’s learn it together and pass it around.
“We’ve turned classrooms into a hell for autism.” And for neurodivergence and anxiety in general. We can change that with new vocabulary and a change of frame.
I've been iterating this piece on neurodiversity in the classroom for awhile, adding the voices of autistic adults, autism researchers, autistic autism researchers, autistic community leaders, and autistic social workers who go into schools to help autistic kids in crisis and educate allistic (not autistic) adults.
Neurodiversity in the Classroom – Ryan Boren
If you've read the piece before, give it a fresh look. This is ActuallyAutistic perspective on classrooms, healthcare, and autism research. When addressing why classrooms are hell for autism, we must interrogate all of society. Classrooms reflect the world in which they are situated.
Follow the folks I cite in that piece on Twitter. Add their blogs to your feed reader. Accept their often challenging perspective, because it is our reality. Bridge the double empathy gap so that more of us can live beyond age 36 (CW: suicide). We’re burning out and dying in the deficit and medical models.
What do we do about it? Start here:
I’m Autistic. Here’s what I’d like you to know. – Ryan Boren
I've received a lot of positive feedback on that piece from fellow autistic people, families of autistic people, autism researchers, and teachers. A couple teachers told me they use it as curriculum for training SpEd teachers.
Follow that up with these thoughts on designing for neurological pluralism:
- Classroom UX: Designing for Pluralism – Ryan Boren
- A Triptych of Triptychs for Designing for Neurological Pluralism – Ryan Boren
Finally, steal everything Albemarle County Public Schools does. Their book, “Timeless Learning: How Imagination, Observation, and Zero-Based Thinking Change Schools”, describes what they have implemented in their school district in Virginia. They have actualized contemporary progressive education compatible with neurodiversity and the social model of disability. They understand, acknowledge, and codify that “the right to learn differently should be a universal human right that’s not mediated by a diagnosis.”