I hit a slump. By Thanksgiving break of 2021, I could barely get out of bed, make breakfast, or even sum up the strength to scroll on TikTok. Just a couple of weeks earlier, I was planning out every hour of my day, executing all my tasks with flying colours, peaking in productivity and socialization. I did not understand what had happened. It took a lot of rest, extensions on assignments, and breakdowns to recover, and even then, I still feel the threat of it happening again almost every day.
This “slump,” as I called it then, was actually autistic burnout. Autistic burnout is in many ways similar to a depressive episode: You experience a lack of motivation, an excess of hopelessness, and a lack of energy. But what makes autistic burnout tricky to identify and overcome is that all the tools that typically help depressed people, like going outside, seeing friends, and engaging in hobbies, can make the burnout worse. So basically, you are stuck in your stuckness.
I had experienced this type of burnout before. Just a few months earlier, in the winter of 2020, I was so unwell I could not read, think clearly, or physically take care of myself. I ended up moving back home and taking a leave of absence from school. During those months, the thought of doing schoolwork was enough to induce a panic attack. Emails to advisors were excruciating. Although simple, the process to request a leave of absence left me drained for days.
Looking back on these two experiences, what I had thought were depressive episodes were really symptomatic of something entirely different. I fell into a deep spiral of trying to figure out what exactly was “wrong” with me. As soon as I could, I sought out a psychiatrist at home and was diagnosed with ADHD. I had done my research and knew the diagnosis was likely: I experience unpredictable bursts of motivation, have intense dedication to hyperspecific interests, and struggle with task initiation. ADHD. And yet, as my psychiatrist talked me through my diagnosis and medication—hi Ritalin—it became obvious that she was missing something. According to her, my ADHD induced social anxiety as well as the sensory sensitivities I expressed I had. Nonetheless, I decided to give the medication a try and see what would happen. I was like an overly caffeinated toddler for a few weeks, not sleeping or eating, but I was finally getting my schoolwork done. I guess it was working.
In my follow-up psychiatry sessions, I tried bringing up the aspects of my mental health that were getting worse. I struggled being in public around a lot of people; trips to the grocery store took me down for an entire day, a disruption in my routine felt catastrophic, and if I became overwhelmed, I stopped speaking entirely until I calmed down. My psychiatrist did everything to explain how this was social anxiety and handed me a booklet with instructions for social situations: How to make proper eye contact in a conversation. How to engage in small talk.
I felt mocked. I knew how to do these things—it was just not worth the physical exhaustion of performing them. I suspected a more accurate diagnosis for me was Autism Spectrum Disorder (ASD). I took all the tests, memorized the DSM-5—the American Psychiatric Association’s diagnostic manual of mental disorders—and painstakingly combed through my childhood memories. At every turn, I found myself discovering a new aspect of my life—of my brain—that I had ignored. Or been forced to ignore. This process was painful. I was peeling back layers upon layers of trauma and masking, realizing no one around me truly knew who I was.
My girlfriend is autistic as well, and so I knew enough from their experience that a medical diagnosis was neither easy to come by nor a holy grail. Most medical professionals do not understand autism through the experiences of neurodivergent people, and most diagnostic tests are based on stereotypes of genius little white autistic boys lining up trains. They therefore fail to accurately assess anyone who is not a little white boy. I also experienced firsthand people’s reluctance to accept self-diagnosis as valid. At an earlier time in my life, I would have agreed that doctors are the best people to provide accurate diagnoses. But eventually I realized that this was a matter of who I was. After seeing psychologists, psychiatrists, and counsellors since the age of six years old who never even thought to assess me for anxiety, I learned that I am the person who knows myself the best.
Despite understanding the importance of self-diagnosis and the inadequacy of the mental health care system, I was still desperate for validation. I waited for someone to tell me that I was autistic, that I had not made it up, and that I was allowed to be in pain. I was seeking this validation from psychiatrists and my parents, but I quickly understood that I was looking in vain.
After speaking to other late-diagnosed and self-discovered autistic people, I learned that I was not alone in my experience. Kate Ellis (BA ‘22), explained that before seeking out a professional diagnosis, they were looking for affirmation from the people around them.
“I mostly just wanted people in my life to like, believe me,” Kate told me. “I wanted the validation of having the words for my experience and wanting people to know me in the way that I now know myself.”
These words struck me, and I was overcome by a deep sense of grief for what my life could have looked like if I had received that validation as a child. This need for acceptance, however, ran deeper. I needed to validate myself first, and to accept the possibility that my health was more complicated than I thought. When I talked to Ana Dumitrache (BA ‘22), they echoed this sentiment.
“I think I had a lot of inner bias,” Ana said. “And I had to work on myself [through] a lot of self hate, like, not wanting to be different or be perceived as someone less competent.”
Talking to other autistic people led me to a realization I was not expecting. Beyond diagnoses, what is key to our survival in an ableist world is community. When I decided to write this feature, I knew I wanted to ask other people who are disabled, autistic, or neurodivergent how they navigated school, the medical system, and relationships. I was excited to conduct interviews, but I did not realize just how transformative these conversations would be. They went beyond the idealized journalistic dynamic of the “objective” interviewer asking questions to a “subjective” individual. I could not easily detach myself from the questions I was asking because they were so deeply linked to my own experience.
At first this frightened me: What if I was breaking some sacred journalistic code of honour? Or what if I ended up submitting a glorified rant session? But as my interviews progressed, it became apparent that being part of the story I was telling was only strengthening my piece—I write what I know and ask about what I don’t.
What all the people I interviewed and I know is that the institutions and systems that we navigate daily, like the university and the health care system, are inadequate and actively harm neurodivergent people. Alex*, a U4 Science student has experienced barriers to accessing McGill’s resources. They have ADHD, but have not been able to get an official diagnosis because of the exorbitant amount of money they would have to pay upfront just to get an assessment. “If you don’t have a diagnosis, there is no solution for you,” Alex said.
Kate had a similar experience. They chose not to pursue a path of accommodations with Student Accessibility and Achievement, formerly known as the Office for Students with Disabilities (OSD), because the process was not accessible to them. Even after Kate submitted an autism diagnostic report, the school required more documentation to grant them accommodations.
“I didn't feel comfortable going to the psychologist that diagnosed me to fill out an OSD form,” Kate said. “And I don't have [a] family doctor, I didn't have a therapist at the time. And McGill, at least at this time, did not accept just my diagnosis report. It would have had to be the particular form. And so that was a big barrier to me.”
Without the official avenues easily available, disabled and neurodivergent students are left to hope professors will be understanding and give them the accommodations they need. Luckily, for Kate, Ana, Alex, and myself, our experiences with professors have been mostly positive. This, however, does not undermine the fact that we have to disclose personal information and risk being invalidated every time we reach out to a professor for accommodations. For the university to truly be accessible, it needs to build in flexibility into its courses, rather than put the burden of disclosure on students. On the other hand, Alex highlighted one university measure that proved very helpful to them when they were depressed. Being able to defer exams their first time without official documentation allowed them to continue their education while also taking care of their mental health.
“It gave me the room to actually go through my mental health issues and not have to drop out of college because I had one bad month or one bad semester,” Alex said.
Beyond the university, Quebec’s health care system has severe shortcomings when it comes to providing care for neurodivergent and disabled people. When Kate was undergoing their assessment, they were constantly misgendered even after reminding the medical professionals they were non-binary. In addition, they were tested for their IQ and eventually given an Asperger’s diagnosis. Kate expressed their discomfort, knowing that IQ tests are deeply ableist, racist, and inaccurate measuring tools for intelligence. Similarily harmful, Asperger’s Syndrome no longer makes up part of the DSM-5, failing to accurately represent the autism spectrum and taking its name from a Nazi doctor.
“I emailed saying I was seeking an autism diagnosis and the whole time he was talking about it as an Asperger's diagnosis. Which is not language that is recommended anymore and doesn't align with the language of a lot of autism self advocates.”
Oftentimes, autistic people are forced to compromise parts of their identity and even their values to receive some form of medical care, of quality or not. The implications of this are even greater for autistic and disabled people of colour, who are often not granted the right of medical care in the first place and are policed and surveilled instead.
Many racialized disabled educators on social media, however, have spoken out about this omission in the conversation, stressing the need for community-based and anti-racist approaches to mental health. After hearing from these educators, like Imani Barbarin (@Crutches and Spice), I started to think about the need for and meaning of community. Barbarin created the hashtag #MyDisabledLifeMatters to highlight how quickly the U.S. government forgot about disabled people in their COVID-19 response. This hashtag is an example of resisting through community, but also a bleak reminder that disabled people, particularly Black people and Indigenous peoples, have to fight for their lives to be seen as worthy. When the institutions that are supposed to care for you consistently fail you, community avenues of care become indispensable.
The capitalist and toxic culture of productivity we live in can be deadly for disabled people. But understanding community care solely as a response to capitalism reflects my positionality in the world as a white person in North America. For many marginalized people, community is not an alternative to the system. It is the system. It is important to remember that white people too often take credit for movements they did not initiate, such as the #MeToo movement started by Tarana Burke or the Stonewall uprising led by Marsha P. Johnson and Sylvia Rivera. This awareness paves the way for us to reclaim concepts co-opted by white and capitalist cultures that harm disabled people and how they interact with the world. Definitions of relationship dynamics like codependency, for instance, have been demonized in favor of self-reliance and independence. These “autonomous” ways of living, however, are often impossible for disabled people. Being codependent can also mean survival and community.
“To neurotypical people, that would be seen as codependent behaviour,” Kate said about their relationship with their girlfriend. “But to us, it's interdependent—we're meeting each other's needs and helping each other thrive.”
Allowing ourselves to depend on each other and have others depend on us while also maintaining boundaries is a beautiful act of love and care. But care can also look like accommodating ourselves. Alex explained to me that so much of how they cope in difficult periods is simply listening to themselves and catering to their own needs. Sometimes, this looks like wearing headphones in a loud environment or sunglasses inside when it is too bright. Other times, it looks like isolating themselves and cancelling engagements. Ultimately, a significant part of living as a neurodivergent person comes down to finding ways to survive.
I focused much of my interviews around the difficulties of being disabled, neurodivergent, and/or autistic. Although it is important to highlight the social and institutional barriers that plague our lives, it is just as important to highlight disabled joy. I ended my interviews with Ana and Kate by asking them about what brings them happiness.
For Kate, finding joy is allowing themselves the time to engage in their special interests (currently the Descendants movies and the comedians Dan and Phil), taking a step back from school, calling their girlfriend, and playing video games with their dad.
Ana feels joy when exploring their hyperfixations and kayaking in the summer.
I find joy when I spend time with my girlfriend—mostly when we let ourselves be and we see how amazing our autistic brains truly are.
I am the most caring towards myself when I feel cared for by other people. Having autistic people around me is about survival, but also about being able to share the bliss I experience in the world. For disabled joy to exist, community is indispensable. So how do you find joy? How do you take care of yourself?
For more resources, my girlfriend, Lou Secher created this document filled with autism and self-assessment resources. For more autistic-written information, I recommend the Embrace Autism website.
*Alex’s name was changed to preserve their anonymity.
Illustrations by Shireen Aamir, Design Editor