The One Year Anniversary
On (re)living 30 years in 365 days
During Autism Awareness & Acceptance month, one year ago, I got the results of my neuropsychological assessment.
I sat waiting on my bed for the 30 minute feedback session. Holding a margin of space for being wrong. Or at least not meeting clinical thresholds.
I trusted my assessor deeply. With how thorough they were in my interviews, with my parents, during testing— I would believe and accept their analysis. They left no stone unturned. It was clear they were serious and took me seriously.
My life was about to fork and I didn’t know which way.
My note taking that built my case. I put it all into a 38 page supplementary document for my assessor, supplied after the assessment was complete. I thought they would skim it, but they specifically mentioned that they read it all.
The Zoom call was on. Notebook out, pen ready. They cut right to it.
“I will address the most important first: So, yes, I can confirm Autism Spectrum Disorder for you.”
I felt like laughing. But not a real laugh. The laugh I have done time and again in past therapy talking about terrible things. The laugh that bubbles up at funerals. That Joker-esque amusement surfacing like when I tore my knee snow boarding. My ex fobbing off concern until he realized I was not getting up.
“Its ok,” My Assessor said, ‘take your time”.
My brain went blank before rocketing into sorrow as a slideshow of my past blasted by my eyes. The first word I uttered was “No.”
Not “No” because I didn’t want it. “No” because I couldn’t possibly have been right. I couldn’t possibly, finally, have an answer. “No” for all the things I couldn’t explain about myself that so many people took the wrong way. “No” for the inner child forced to socially interact at nursery school. “No” for the teenager with agoraphobia because of how much she was bullied. “No” for the young adult who couldn’t understand the dissonance between people who told her she was smart and the post-secondary regression, untreated, unrecognized. “No” for all the things to come in 2023 that I hadn’t unearthed yet.
Verbal validation and documented truth are different things. It was never going to be enough for any lay person to passingly agree with my hypothesis that I had Autism. I wanted, needed, the truth in black and white. Accompanied, I assumed, with some layout I could follow to make life worth living. Could diagnosis be a second chance? After all, I had lost everything. My business, my art practice, stable income, any chance of debt recovery, ability to pay for basic needs, friends, job after job, connection with family, interest and meaning in Jiu Jitsu.
Sinking and drifting at the same time, I needed pragmatic change and help based on this reality. My spiralling quality of life was on display for decades. It was in the room at so many therapists offices that I sparsely visited, as my economic status could not keep up with my rapid mental decline, as desperate options began to have more appeal just to make the pain cease.
It took me a year to read my report in bits and pieces. It is very heavy. This document weighs more to me than any congratulatory thing I’ve had, beyond any degree I barely achieved. No passing success I’ve experienced could rival the impact of these pages.
During the summer of 2023, I managed to get my head around the documents and see to filling out applications for income assistance. I read and re-read the eligibility criteria over and over. This is me. This has always been me. It has always been this significant.
A small section of the DTC application that I am comfortable sharing. I already knew this because I lived it. To think there was always real language to describe my struggles and not just this nebulous “anxiety”.
My Assessor had filled out the federal Disability Tax Credit for me. I had never heard of it. As I read their descriptions all I thought was, “Yes. I know”. This was the only type of validation I would accept. Don’t tell me it’s ok or that I am strong. For the love of God, acknowledge my limited capacities that I cant verbalize but are clearly demonstrable.
You’re so sensitive, how do you always forget, you’re so selfish
I’m not saying some aspects I can’t work on, but I literally cannot put it together myself. Never could and I was heavily criticized for it. I need help and a lot of patience. To many, these gaps in perception and reciprocity looked like disrespect, callousness, disregard, self absorption. My age has nothing to do with it. How ‘smart’ I am has nothing to do with it (I actually did not received an IQ score). What my Drs and the government agreed upon regarding me was the only balm to this white-knuckled existence, feeling like a disappointment to everyone, inevitably, at some point.
After 4 months of waiting (could say 30 years, really), in September 2023, my application was accepted by the federal government.
I entered Fall with the life saving measures of provincial and federal assistance. I was granted the full scope of retroactive taxes—which refunded 10 years of me overpaying due to my disability. The DTC helps many who cannot secure work due to their mental or physical issues that have great bearing on retaining, securing and maintaining sustainable jobs (careers…doubt it) so we do not become houseless.
It is also the stepping stone for the Registered Disabilities Savings Plan, which helps people like me save money for the future.
When I received my back pay, which was a fair amount, a feeling I’ve never had washed over me. It was a sense of safety. My first line of business was to buy underwear. Shoes, socks. I began to purchase groceries to fill my fridge. I could never afford a week at a time.
And the most unbelievable thing: I could pay rent without thinking about it.
Only if you have ever been on the other side, will you ever understand that power.
It was nowhere near enough to address my past debts, however. And by this time, I had already made a decision: if I ever get money, I am filing bankruptcy.
Selecting bankruptcy was a long, thoughtful process where I was helped to understand the process, proceedings and outcomes. I made the decision carefully, weighing it all. Although I missed a few things (I should have had an additional advocate) that ended up costing me more money, I went through with it and now that I am 6 months from my discharge I know I made the right choice.
Finally affording basic needs, I could also pay comfortably for therapy. I was going weekly, unable to access such a privilege before. Craving resolution to subjects I hadn’t even become aware of yet.
I , in fact, could not handle it
For a very long time I believed money was my entire problem, then when I had it, scenarios that superficially explained my anxiety revealed their deeper origins. For the first time I considered my finances may be symptomatic to the larger issues at play, documented in my reports.
Then, I came to a very liberating thought:
I never had a chance.
All these successful futures other people built for me inside their heads, never materialized. “Talent” does not beat out despair, mental anguish and depression. Maybe all this can help me give up the persistent idea that I was at fault for everything in my life I desired, disintegrating or never coming to pass. With all the following below at play, everyday, across contexts—what—I was going to be ok and get by “normally”?
A year on, along with the traumatic memories that have tried to drown me as I make my way to surface, I’m now being greeted with alternatives.
Times I played with my neighbours (family, really) as a little child. Nights I spent hotboxing with my high school friends in the countryside, ending up in dead mall parking lots with tea and timbits. Getting airplane rides on my Dad’s back as he carried me off to bed when I was young.
For the majority of my life, my youth and childhood were washed out. Sequestered behind an iron door I couldn’t access. Now, these memory flickers are acting like post-it notes, reminding me there were times and people that made me feel safe.
Occupational Therapy, to my surprise, has me confronting my relationship with food, disordered eating, and my repetitive & restrictive behaviours that unduly influenced it all along.
For over 30 years there has been tremendous suffering. I will always deeply know and acknowledge that. I’m not one of people with Autism who believes it’s a gift. That runs contrary to my reality; both internal and external lived experience. But, this diagnosis and the resources I now have access to, has given me the idea that a manageable-dare I say peaceful-life is still possible.
And that’s all I ever wanted to begin with.