Late Not Less: Adult Autism Assessment Is Prohibitively Expensive
Olivia “Liv” Robinson (they/them or she/her) is an artist, self-diagnosed autistic person, and non-profit worker living in Vancouver who has been unable to get a formal diagnosis because it’s prohibitively expensive.
They work as an Art and Design Studio Assistant for Arts Umbrella, a non-profit youth arts education centre. Liv also moderates AutismBC’s Getting Together on the Spectrum online event, which creates space for autistic adults to learn from and grow with each other. Liv immigrated from Ireland to Canada to pursue her Master of Fine Arts degree after finishing an undergrad in fine art painting.
In March 2021, I was in yet another burnout.
I had moved continents, started in a new university, and was trying to get used to a whole new culture and place. Everything familiar in my life was back in Ireland, and then COVID closed the university. I slowed down and really started to notice how burnt out I was.
I think the change of plan, and having to pause my courses, pushed me into trying to figure myself out and find words for the recurring issues and challenges I had faced since I was young.
I was first diagnosed with depression and anxiety when I was a young teenager, admitted to a psychiatric hospital at 17, and discharged at 18 because the treatment, medications, and environment did not help.
These burnouts that I experience feel, at a minimum, like losing cognition and skills that help me manage my life and “keep the wheels on.” It affects my day-to-day functioning and long-term planning, too. At worst, it feels like I need to shelter in a sensory-deprived room for days or weeks and wait for my body to not feel like a fragile shell.
I learned the term “executive dysfunction” on March 2, 2021, and that really changed everything. Then, I found the words “autism” and “ADHD” and very quickly pieced it all together. The social challenges, sensory issues, repetitive behaviours, stones in my pockets, food problems, executive dysfunction, difficulties with self-regulation — the list of seemingly unrelated things all linked together once I started learning about autism and ADHD. I had been trying to get to the bottom of it for years.
I started speaking earlier than expected and intuitively picked up skills like reading and spelling. I got excellent grades across the board in every subject but math, which I’ve always struggled with.
In my first year of school, at age four, my parents were contacted because I wouldn’t stay seated and went around “flapping my arms like a fairy or butterfly, disrupting all the other students.” I am a quick learner, so I learned how to comply, conform, and suppress behaviours that got me into trouble — no matter how natural they felt to me. I became very polite and well-behaved as I got older.
My mother says I always marched to the beat of my own drum, followed my own interests and tastes, and didn’t pretend to like the latest styles or toys. I’m pretty sure I was trying to march to everyone else’s beat, but intrinsically just couldn’t do it right.
I was able to pass for “normal” and make friends with everyone around me but remained on the periphery of close-knit friend groups. I always struggled to maintain the relationships I did cultivate in the unwritten ways others expected. This led to me mostly hanging out with my grandmothers as a child and teenager, which I loved because they did fun things that aligned with my interests! I had no interest in what other kids my age were doing, except the Sims PC game, which probably taught me how to socialize.
My pockets were always full of rocks. They still are! If I ever wandered off as a child, I hadn’t gone far. I was likely crouching close by, looking at rocks and textures on the ground. I have boxes of rocks and shells and have always loved collecting things. I used to spend time organizing my colouring pencils and belongings in chromatic order.
My Response to Being Late-diagnosed
If a well-versed professional looked at the burnout I hit as a young teenager today, I do think they would have noticed I’m autistic. Knowing as much as I do now about autism, I can see all the patterns because I know what to look for!
We didn’t know how to look past the mask when I was young, and we didn’t know much about presentations of autism other than the white, assigned-male-at-birth stereotype. I learned to mask very well. I encounter realizations and “a-ha” moments frequently and think, “Wow, how obvious.”
This is what happens when you learn later in life that you’re autistic. Over time, you wind up recontextualizing and reinterpreting everything that has happened in your life. Pennies keep dropping when you begin to see all the ways you interact with people and interpret situations “incorrectly” and why all those jobs and friendships never worked out.
I wasn’t picked up as autistic because it wasn’t common knowledge, even in the 90s and early 2000s. What is now shown in media depictions of autism is very different!
My high masking skills come at a cost, but they mean I hid parts of me that would have otherwise made me noticeable. I didn’t melt down so much but often internally shut down.
Research has been moving faster in the last few years, and studies are moving away from focusing on one very specific demographic of autism. The internet is allowing people to access and absorb much more information about autism, which can help them come to realizations they likely wouldn’t have had before.
My Life as a Late-diagnosed Autistic Adult
I’ve found it so hard to keep jobs ever since I was a teenager. I give it everything I’ve got, but it ends up being wildly unsustainable for me. I always thought I just wasn’t trying hard enough, but the truth is that I’ve always been doing my very best. Now, I can see my strengths and weaknesses in a workplace setting because I know I’m autistic, but I would have loved to have the insight before I started trying to hold jobs. Instead, I just kept wondering why I kept having “panic attacks.”
It’s incredibly hard to hold a full-time job and manage myself at the same time, and sometimes it feels like I need to pick one or another. Most of the time, the job comes naturally to me, but the environment is challenging. I don’t have much control over my sensory experiences, and most jobs require that I interact with people a lot.
I have lost lots of relationships over the years. Sometimes I offend people with my directness without realizing it, and sometimes my frame of logic is just so different from other people that we can’t see each other’s reasoning. Again, I can see much more clearly how I mess up in social situations in hindsight. I have learned better communication strategies because I can properly see where the disconnects are.
Trying to manage a job and pay bills makes it so hard to self-manage, let alone maintain hobbies. It’s sometimes impossible and devastating for someone who needs to engage with special interests to feel full, rested, and regulated.
Completing a degree in art was perfect for me. I got to study painting with other artists, explore a multi-disciplinary practice, and experiment with different media. I studied the human condition through my own language of paint and studied branches of philosophy like phenomenology and existentialism, letting my interests guide my research.
However, when it came to academic expectations around completing assignments or studying for exams I wasn’t interested in, I had serious difficulties. They persisted even though I had no issues with reading or writing at all. I could never understand why I still had such incredible difficulties, which I now know was executive dysfunction.
I can’t finish my Master’s degree until I can get appropriate accommodations, which means being assessed for autism, which I can’t afford.
One of the biggest things is that I can much more clearly identify my needs and boundaries. That understanding has been instrumental in supporting myself. I now have a better idea of how to listen to myself and what to listen for. I can estimate what kind of toll certain activities and environments will take on me and budget my energy. I know that I interpret things much more literally than I originally thought, and I have a very different communication style from most people I meet. I understand that previous diagnoses of mental illness were secondary to autism, and meeting my needs as an autistic person has immensely improved my mental health.
Considering Formal Assessment
I can’t afford a diagnosis because it’s too expensive. It costs thousands of dollars! There are also tons of steps to making it happen — researching professionals, joining waitlists, emailing, calling, waiting, finding funding, remembering, documenting, and viewing it all through a deficit-based medical model of disability.
It can be traumatic, and there are so few supports for adults on the spectrum that there isn’t a lot of incentive to get a diagnosis aside from having your suspicions confirmed — especially as a non-permanent resident. A diagnosis can also be helpful for getting accommodations at school and work if you can afford the expensive price tag.
If I were able to get a diagnosis, I would gain access to academic accommodations because I would have “proof” that I’m autistic. This is sometimes necessary, depending on what kind of support you need.
My medical care might change. Autistic people tend to have a certain set of co-occurring conditions, so specialists might catch problems sooner and know how to screen for common conditions among autistic folks, like EDS and hypermobility. MCAS and visual and auditory processing difficulties are also common.
Medical professionals might not take my word seriously without a diagnosis. Autism affects my pain tolerance, and other co-occurring conditions may impact anesthetization’s efficacy.
It would truly confirm the recontextualization of all the mental, physical, and emotional turmoil I’ve been experiencing if I got a diagnosis. All this confusion and frustration about therapies and medications not working could end. That peace of mind would help me heal.
Advice to My Past Self
I would tell myself to research autism and neurodiversity. I wish I had known when I was younger. Learning about it has become such a joy, a special interest, even!
I have been interested in psychology and anthropology since I was young, probably because I was trying to figure out how to be a person the whole time. The “why” of everything is so important to me and other autistic people. My puzzle was that I had all these mental health issues, but nobody could see the causes. Hospital visits, medications, and other treatments were not as effective as they could have been.
Now, I see my past diagnoses as secondary to autism and ADHD because I have essentially been studying people my whole life to figure out how to interact with others and can now see neurodivergent traits in the people I’ve been able to click with over the years. I would tell myself to cherish those people and relationships.
I’d also say, “Hang in there. You will get your answers one day. It will all make sense eventually.”
#LateNotLess: How Autism Acceptance Changes Lives
What do you want the world to know on #worldautismday? We live in a beautifully neurodiverse world and the best thing we can do is to allow space for people to be themselves. Diversity is a strength that can only be accessed if we put aside stigma and see each human as they are. We must listen to #actuallyautistic voices on this day (and every other) if we hope to create an equitable and inclusive world. Throughout #autismacceptancemonth, we’ll be sharing the stories of these incredible autistic adults, including the barriers they have faced to accessing diagnosis, support, understanding, and acceptance. Visit www.autismbc.ca/latenotless for a sneak peek or share your own late-identified story using #latenotless #staytuned #autismacceptanceVideo Transcription
#LateNotLess - Assessment is Expensive and There is No Public Funding
Knowing your boundaries and understanding your needs can be the hardest part of being an undiagnosed autistic. Liv struggled with their mental health for years and never really knew why. Since identifying that they are autistic and adhd in their mid-twenties however, Liv has realized that the best thing for their mental health is learning how to care for their needs as a neurodivergent person. Liv is sharing their story of being an undiagnosed adult and how they are learning to carve out boundaries now that they know themself better. We want to hear from other late-identified autistics in BC: what was the biggest impact in your life when you realized you’re autistic? Use the hashtag #latenotless
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