Despite having autistic family members and working professionally with autistic children and adults, it took decades before I finally began to wonder if I could be neurodivergent.
Waiting for the bus after a long day of classes and work, the noise began to overwhelm me. Cars, trucks, buses, horns, people everywhere, endless noise – and then a car alarm began to blare. I knew I was tired, irritable, frustrated. But nothing prepared me for the tears that began pouring down my face. My heart raced and body pulsed with anger and frustration.
I didn’t know then that I was neurodivergent. The word wasn’t really a thing back then. I was studying autism, and a lot of the young people I worked with demonstrated extreme sensitivity to noise. They seemed to hear things no one else could hear. My son, diagnosed with autism and ADHD, couldn’t focus in class, distressed and distracted by the sound of the clock ticking on the wall. Other kids startled, cried, even sobbed at the sound of plastic crinkling, fabric moving against fabric, a phone conversation three rooms away. But I didn't think I wasn't autistic. I was just…stressed by noise? Overwhelmed by my life in general?
Years passed. And now, as I sit writing this, I remember similar incidents. Getting ready to administer the ADOS (a diagnostic test for autism) to a study participant, crowded into a small camera room with a half-dozen staff members in our research facility, I remember the noise. I remember my body tensing, the panic starting in, excusing myself to the hallway. The embarrassment, not understanding why I couldn’t “just be normal.” “What is wrong with me?” I would wonder, shaking, trying to pull myself together.
There were other things that were…different about me. Rules were written in stone. My third grade teacher told us that we would have to read all the books we checked out from the school library, and I sobbed hysterically to my dad. I regularly checked out 500-800 page books. What if it was a terrible book? Now I still had to read it? My dad called the teacher, only to be told that the rule was to force students to actually complete books so they could then complete the the associated book reports. As I’d finished all my book reports (including one on the Lord of the Rings) in the first month of class, I was relieved to be exempt from this distressing regulation.
On rainy days, recess would consist of watching cartoons in the gym. Other students were so excited. I was confused, bored, and miserable. I didn’t understand why cartoons were funny. I’d laugh when everyone else did, hoping no one would realize I wasn’t…quite like them.
In fifth grade, frustrated with kids dumping half their uneaten school lunches in the garbage, my school said everyone needed to eat at least one bite of everything on their plates before being allowed to leave the lunchroom. I was a straight A student, well-behaved to the extreme…but I could not comply. I could eat the french bread, the cookie, the orange. I could not touch the spaghetti, the hamburger, the sandwich bread that turned gummy against the mayonnaise and lunch meat. On the day them implemented this rule, I snuck into the bathroom. Students weren’t allowed in the bathroom at lunch, and I knew a teacher would pop her head into the bathroom and look under the stalls for feet to confirm the bathroom was empty. For the remainder of the year, I spent my lunch period standing on the seat of the toilet in a stall on the far end of the bathroom. My feet wouldn’t be visible underneath the stall, and I left the door slightly ajar so the teacher wouldn’t be suspicious. I was hungry for the rest of the day, and bored, and lonely, and felt even weirder. But I could not eat that spaghetti.
In college, I got lost trying to find my classes. Not just the first day of classes, or the first week, but every day. As an adult, I regularly got lost in my own office building. Sometimes I misjudged distances when turning a corner in the hallway and simply bumped into the wall, embarrassing myself in front of my colleagues. I couldn’t recognize faces, relying on things like people’s haircuts to distinguish between individuals. White men with short brown hair – they all looked the same. I never backed my car into a parking spot – trying to triangulate the reversed images in the side and rear-view mirrors with the yellow lines was simply too much for my brain to process. I fell regularly, especially when tired – at least once a month. I got sick in the heat, my body unable to navigate temperature changes. Bright sunshine left me squinting, dizzy, irritable, nauseous.
I was passionate about social justice. Passionate in a way that made others look sideways at me, made them question my judgment. When Hurricane Katrina hit, I paired up overnight with strangers on craigslist to form a grassroots volunteer organization. I left a message at my job saying if they had to fire me that would be fine. I put the $500 plane ticket on my credit card and flew to Houston to stay with strangers. Together, our small group helped Katrina survivors living in the Houston Astrodome, where they’d been bused by federal relief agencies, get to the homes of friends and family members where the could stay and recover.
I was obsessed with books, ideas, and learning. I taught myself to read at four using an adult literacy guide I found on a bookshelf in our house. Besides the books from the school library, I checked out a dozen books from the public library each week. Another girl at church told me people didn’t like me because I used big words and people thought I was stuck up. I was confused and upset; I didn’t mean to make anybody not like me, I was just talking. I scored in the 99th percentile of the verbal section of the GRE. I could see ideas in my mind as three-dimensional groups of clouds, with lines between connecting the clouds. I created research hypotheses by moving the clouds in my mind and watching what happened to the lines that connected them. And when I’d tell others, excitedly, animatedly, about these ideas that fascinated me – they’d nod politely. I learned to be quiet. Something, I realized again, was different about me. From the reactions of others, I learned what parts of my differences it was okay to share and which parts I needed to hide.
In my late 30’s, I left the research world to work individually with neurodivergent teens and adults. Having been raised by an autistic father, having raised an autistic son, having volunteered and worked professionally with countless neurodivergent individuals, I felt tethered by research protocols that didn’t let me provide families the support I knew I could provide.
Working with individuals every day in this new, independent capacity, my eyes were suddenly open to data I’d never noticed. I began to understand autism on a much deeper level, and things began to fall into place quickly. My inability to recognize faces? It’s called prosopagnosia, or face blindness, and is common in people with ASD. The clumsiness, running into things, hurting myself, getting lost within buildings? It’s called dyspraxia, and is a developmental disorder impacting motor skills. My high verbal IQ would fit the pattern of many other neurodivergent women. In that light, the experiences of my childhood – rigidity around rules, distress around certain foods, difficulty in social settings of more than one other peer – immediately made sense. My obsessive passion for ideas and my single-mindedness towards social justice causes also align with the experiences of many other neurodivergent individuals.
Autism does not look the same for everyone, and it is not always easy. For people like my adopted brother, who has no expressive language, being autistic includes chronic pain from related GI issues, a proclivity to wander with no awareness of danger from moving cars or strangers, and has severely limited his options for an independent life. I stand with solidarity and in full support of parents who have dedicated their lives to 24/7 care of their autistic family members. I wish very much that I could alleviate the disabilities that sometimes are associated with autism, and when I hear families advocate for a “cure” for autism, I think that’s what they mean.
Even for neurodivergent individuals who may “pass” as neurotypical, autism often includes overwhelming – even crippling – anxiety. They struggle navigating social settings, and may experience distressing sensory sensitivities. Autism is also characterized by uneven development. I’m good with words, but less so with numbers. My gross motor skills are definitely lacking. Other neurodivergent people will have their own unique patterns of strengths and challenges.
But here’s the important part: struggling with geometry and sports didn’t hurt my spirit as a child. What hurt me? My math teacher yelling at me in front of everyone. Being picked last for a team and teased about it. What is most harmful to the psyche of neurodivergent individuals is criticism and social rejection when they struggle, and the resulting belief that something is wrong with them. Criticism and social rejection teach neurodivergent individuals that they must mask, hide, and cover over parts of themselves.
I strive to help my clients build within themselves the resilience and grit necessary to navigate a world that doesn’t always get them. I help them understand how neurotypical people may interpret limited eye contact, and that going on and on about a topic someone else doesn’t care about is likely to harm their chances of building a relationship with that person (I know from experience!). I will tell them that they have a responsibility to do their best to provide for themselves, and that isolating and gaming 24/7 may have its appeal but it’s not a great recipe for building an independent life. But mostly, I will tell them that while it will help them if they understand the neurotypical world, they don’t have to pretend to be neurotypical. The path forward for neurodivergent individuals is being the best version of ourselves.