Discoveries of a Late-Diagnosed Autistic Advocate
The Journey …
I, Kara Dymond, was diagnosed with autism and ADHD in September 2021.
It was a relief, but not a surprise. For years, I had kept a running list of traits on my phone. Internet surveys invariably revealed a high likelihood of being autistic, even as I adjusted for question ambiguity. The always, sometimes, and nevers stumped me: “Okay, but I find it comfortable to socialize with those three people, but extremely exhausting and anxiety-producing with just about everyone else. What the heck do I put?!” (CLUE #37: I spent my high school years writing out the reason I picked various true or false or multiple choice answers on tests, to ensure my thinking was understood. Precision matters!)
Similarly, multiple autistic students over the last decade had asked me how I could understand them so well, if I wasn’t autistic. I chalked it up to being something of a translator, speaking both languages with relative fluency. I hadn’t yet noticed (CLUE #42) how my lessons tended to focus on the lack of understanding or logic of neurotypicals and how to navigate their nonsensical unpredictability or lack of straightforwardness.
Or picked up on how my empathy stemmed from my ability to relate. I was a precocious chatterbox turned shy when I moved schools in Grade 1, letting a new friend call me the wrong name for several months. (I still don’t correct people when they mispronounce it. It’s like ‘kare-ah’, as in, "I care a lot about you”.) A logical thinker. A hyper-empathizer with toys and objects, but with delayed awareness of my own personal feelings. An imaginative writer, even as an 8-year-old, creating worlds and using conventions like ‘discovered historical diary entries’ interspersed with a present day mystery(with sometimes embarrassing literalisms like not realizing the Underground Railroad was not, in fact, an underground train). A rejector of social hierarchies in the playground, and later rejected because of it. A geek, preferring textbooks to boy bands. A gym class pariah, though only in part due to my lack of coordination. A person whose handwriting necessitates a Rosetta stone to decipher. And a heart, perhaps too trusting and gullible, with zero radar for deadpan sarcasm. (CLUES #50-62)
“But doesn’t everyone experience these things to some degree? Or even to a significant degree?”
When my first book was published in October 2020, one of my first readers who wasn’t a friend or family reached out to tell me how much he enjoyed it. He was an autistic teacher from another Canadian province named Bruce. We began sharing resources, articles, disparate ideas on education, inclusivity, accessibility, neoliberalism, and more. Over time, he probed about my intuitive reactions to various ideas, and eventually suggested the reasons for these might be … da, da, daaa … that I was autistic. Cue the beginning of many a text like this:
“Is this an autistic thing, or ….”
“Do you think neurotypicals ever experience this?”
I had lurked on Autistic Twitter for awhile, but began to engage in earnest, adding to my surging list of traits as I hard related to many of the experiences shared by other autistics. I had also recently begun clawing my way out of a period of a significant burnout that made many things feel insurmountably difficult. I found support and understanding in the autistic community.
And so, the scrupulous review of my life began.
How I had long been intensively interested in understanding human behaviour (CLUE #79), from mimicking movies in the mirror in childhood, to taking up acting, to studying psychology and anthropology in uni. I even had a friend describe my playwrighting efforts as “an attempt to understand the minds of people who think differently than you do”. How I put on roles like Teacher Kara, Presenter Kara, and Girlfriend Kara as if they were articles of clothing (and often had associated wardrobe items!) to inform how I act in those contexts.
How my most reliable, easygoing friendships were with neurodivergent people (CLUE #86).
My distress at and inability to shake injustice, even (and perhaps especially) when it does not directly impact me (CLUE #94).
The unending stream of embarrassing memories that gets triggered and plays through my mind any time I do something else, newly mortifying. (I’m losing count of clues…)
How I have always had to bribe myself to make an appearance - “just for an hour and then you can leave!” - at a friend’s birthday.
How I spend so much time during interactions thinking about what my face is doing and if it’s conveying the emotion I hope to convey. Masks during the pandemic have been a huge relief in this respect!
How I always struggled to answer the dreaded, “How are you?” question. I am torn, always, between wanting to narrate recent life events in depth for listener understanding - and giving a feelings word. I don’t easily identify my own feelings, often having to work backwards from symptoms to an emotions hypothesis: “Oh, my heart is racing unusually fast. How much coffee have I consumed?” If there’s no evidence of caffeine overindulgence, I can proceed on the assumption I am anxious, and try to deduce the reasons why. Often, I rely on my cognitive understanding of what is an expected feeling for the situation (CLUE, CLUE, and CLUE).
“You must be so excited about your new book!”
“Yes, thrilled!” I was, in fact, terrified. Putting one’s ideas out for public consumption and criticism is beyond uncomfortable, but it was faster to say what I reasoned out was what I should say and feel, rather than how to express the complexity of competing emotions I could barely label myself, never mind articulate for someone else to understand.
I had long considered other neurodivergencies. A childhood gifted diagnosis had always felt like a subtle jab, when considering how many areas I felt completely useless in (math, adulting, not knowing why things I said frequently got a laugh or were misconstrued as rude). ADHD seemed likely, given the many times I found my keys in places like the refrigerator, my ever-whirring mind, and inability to relax. How I would experience dread and tears on repeat while trying to organize my tax documents at the last minute - despite using an accountant! (Hmm, perhaps I should listen to my little grey cells…🕵️)
One of the reasons my instinct was not immediately “autism” was I didn’t think I experienced significant sensory issues. But upon reflection, I stop speaking and lose the ability to process auditory information in loud environments. I sat hugging all the coats at my best friend’s bachelorette, praying my ears wouldn’t explode from the dance music and beating myself up for being such a wet blanket. I love and seek out strong flavours in food, to the point where some have suggested I over-season dishes. My comfortable temperature threshold is decidedly small. I broke my arm and told no one for several days as a small child. I can hyperfocus for hours without noticing hunger or thirst. I am almost always shifting my weight, rocking, or shaking a leg so body knows where it begins and ends in space. (Wouldn’t take Columbo to sleuth out all this evidence!)
And when my friend Bruce came to visit, he asked if I wanted to try his noise-cancelling headphones while we were in the subway.
“Holy cannoli, this is so peaceful!” Even for someone with low somatic awareness, I could tell the headphones made a visceral difference. I didn’t feel irritated or anxious to get to the end of the journey. I felt … calm.
It really goes to show, how does one know one’s experiences are vastly different from other people’s? Thank God for autistic elders and communities where we are safe to share how we think, feel, and experience the world.
Preparing …
Time for answers!
I’m not going to lie (I rarely do!): it took me longer than I’d like to set up the appointment, and I was relieved to find I could book by email. From there, I did what I do best … I prepared. I sorted that list of traits on my phone … into a 21-page document.
Almost 8,000 words.
Charting traits across my lifespan.
With expert pattern recognition, I made meaning out of them. By the time I was done, I knew. (That’s not to say I didn’t have moments of imposter syndrome throughout the 5-month diagnostic process!)
I was blessed to find a clinic run by neurodivergent practitioners. This eliminated some fears I had about being taken seriously, as I’d heard of doctors and psychiatrists dismissing folks with PhDs, jobs, and friends. I also hoped neurodivergent diagnosticians would be less likely to be vague or to demand I fill out rating scales (an impossible task!). It was a long process of validation, but besides bursting into tears at the beginning of each session out of overwhelm, I found it relatively painless. My chart helped me to remember experiences to highlight. Both the initial therapist who screened me and the doctor who completed the evaluation over multiple sessions reassured me: neurotypicals do not come into assessments having done the work for them. The charts themselves were evidence I processed and made sense of my world in a beautifully autistic way.
The Revelation …
The relief was palpable - even for me! - when I heard, “Kara, you are autistic. Congratulations!”
Validation.
Rebirth.
A new framework for self-understanding.
Self-forgiveness. The clarity the diagnoses brought also came with a mourning for the parts of me that have not been nourished and nurtured, but hidden away. I could open up that Mary-Poppins sized bag of shame containing all my “Why on earth did I do that?” or “How stupid am I?” memories and see them with compassion for the first time. (For Whovians, my bag of shame could be described as ‘bigger on the inside!’)
I’ve been told it is a continual process, reviewing one’s experiences, traumas, and worldview. I’m still discovering things about myself, and navigating with whom and when to share my diagnosis. (My students were a given!) I see it as something intimate, beautiful, tender, and complicated - and I have the right to share or not to share. Like my trust, it does not have to be a given.
I am privileged enough that unmasking can be uncomfortable, but not dangerous. I’m also privileged that I can pass at times as neurotypical (albeit, a ‘quirky’ one). The downside of this is that it has also masked many of the things I find challenging so others do not know how to help me, or even that there are times when I really do need help. I am unlearning my tendency to say yes to everyone, to hide all of my faults and imperfections lest I experience rejection and judgement, to work myself to the bone, and to push through past what is reasonable into burnout. I have given myself permission to lay in a dark room after work for as long as I need to restore. I now take time to be alone during social gatherings. I am asking for clarification when directions or communication seems obscure. An autistic therapist is helping me identify the signals my body sends me which can inform me of my gut reactions. I’m getting in touch with my own feelings and wants, slowly but surely. Even if it takes a few days sometimes for me to recognize. I am beginning to do something called setting boundaries?? Yes, I know!
An Acknowledgment or Two…
I am extraordinarily privileged to have had access to a diagnosis, given the systemic barriers so many others face. If you are on your discovery process, know that self-diagnosis is valid, an essential part of your journey (after all, who gets a diagnosis without first thinking it is a possibility?), and often a necessary endpoint. If you relate to the autistic community, I welcome you! Neurotypicals do not spend the majority of their time feeling like unusual outsiders. And if it’s helpful, I created a sample template to help your sort your own traits. Begin collecting your own clues, and may it bring you peace and positive growth, as it has me.
I’ll say it again, self-diagnosis is valid and important. And so are you!