Late Not Less: Autistic Adults Need Supports

Caroline is an instructional designer from the Lower Mainland who is currently on long-term disability due to long covid complications. She has a degree in psychology and has worked with neurodivergent students transitioning into post secondary. She shared with us how she realized she is autistic and why she feels she will remain self-diagnosed.

Trigger warning: Suicidal thoughts and attempts are mentioned in this article.

The Realization

The moment I realized I was autistic was in the middle of my son’s Zoom violin lesson last March. For whatever reason, we were doing it from home that week, and I was supposed to be a parent assisting with the lesson. But, I got caught up behind the scenes trying to catch up on parent to-do’s – one of which was assessment intake forms for my son’s autism assessment. But I found myself in this unexpected google rabbit hole about what autism looks like in girls instead. Mostly because our pediatrician had recently suggested, this was the cause of some health challenges my daughter was facing at the time. The process of filling out and arranging for others to fill out autism assessment questionnaires meant I had been swimming in the topic for a while.   

For whatever reason, I found a corner of the internet where the clickbait spoke to girls & autism. The rabbit hole continued naturally to adult assessment somewhere along the way – violin lesson still going on behind me. Then, I just kept reading experiences of autistic humans and being … mesmerized.   

Finally, I read something like, “If this is the path you got to get to this information, you are probably autistic.” That’s how we got here too! It felt very theatrical in some ways – like a “holy crap!!” really loud inside my head, followed by huge chunks of my existence being refiltered all at once with this new information as its foundation. Like, “OOOOOOH, WOW, SO THAT’S WHY – WOW!!” Then I just knew from that moment on. (Then I went back to the violin lesson because … parenting, right?).

Part of that process was reading other people’s versions, which was so vital for me to “see” myself in the information that was coming from other actually autistic adults, not DSM criteria, not doctor’s or psychologists’ formal opinions, but what made me feel seen were tweets and memes and blogs from humans who had such similar experiences.

No matter what our differences – our experiences of being and identifying as autistic suddenly felt so…right. Which is why I wanted to do this. The saddest part, for me, is that so many of us are going through this so alone – no matter what realization stage we are at. That shouldn’t be happening. We need to be talking about this. We need to hold each other up through this journey so we can ultimately celebrate our neurodiversity together instead of battling stigma alone.  

Reflecting on Childhood

I can now see that I come from a generation of humans whose autism will largely remain self-diagnosed. But, in a bittersweet way, we will learn about ourselves through the process of learning about our children. Reparenting my autistic inner child is a big part of my healing process.   

I think it’s even more likely that many of us won’t even ever consider ourselves in this gentler way. I currently feel I am mourning and slowly accepting this over time. This idea that, though there is an underlying reason for some of the confusion and loneliness, it’s unlikely to ever be formally acknowledged. It’s not what I want, but it is what it is. There are better, more equitable paths ahead for my children, so I continue to focus on this rather than sit in the despair of my own silence and diagnosis.    

As I continue to refilter my life with this information, it’s that hindsight perspective – ah, that was so autistic of me! As a child, I would say I was a good student who spent a lot of time in nature. I remember very little, but what I do remember was introspective time, much of it deep in nature around the west coast.   

As a teenager, I had a small group of female friends and played a lot of sports. The sport was really important in keeping me going, and now it seems like it makes sense from a neurodiverse lens – a regular schedule of structured activities with specific rules. I played sports 5-6 days a week much of the year with the same humans, who were also my social circle.  I think they accepted me for who I was, even before I knew who I was. They continue to do so to this day, bless their hearts.   

Understanding how autism affects my life

I ultimately feel that autism has deeply impacted my ability to identify and maintain healthy relationships with other humans. I can see how, though I am deeply empathetic – to a point of physical pain sometimes – I miss social cues. I can often tell when this is occurring by the reaction of the other humans to me, but I still feel unsure how to “right” the situation. This has often impacted my ability to hold onto leadership roles in my career, which require increasing political perspective that is foreign to me, no matter how many attempts I make. It’s hard to see – and then assess – ourselves in this way.  

As for school, this was one of the first foundational blocks that “fell” at the moment I knew I was autistic. I experienced serious mental health crises during my time at university. I had been a great high school student – nearly top of my class. I took two years off after high school but was now accepted and attending a world-class university. But, I had somewhat impulsively moved across the country and away from everything I knew, and I just couldn’t find my footing. I felt like a failure. Over and over and over again. I knew I was experiencing post-secondary in a different way than those around me. I fully felt that I was not doing it right; something was off.   

In my second year, I joined a volunteer group of peer learning strategists that actually went into dorms and taught first years study and organization skills. It was exactly what I needed – the playbook for how to survive university and as many iterations of teaching as I could fit into my schedule for five straight years! But by my fourth year of my undergrad, I was pushed past my limit. Everything fell apart.

So when you ask me when I knew I was autistic, I guess this is the answer: I knew the moment I read about the autistic shutdown. As I was reading the article, I felt like I was reading a description of the second half of my fourth year. An experience that had nearly ended my life – that I have held inside of me as my own fault, my lack of resiliency and abilities shut down with no explanation that was clear to me. It was so clearly the definition of an autistic shutdown.

At the time – I had been accused of malingering to get out of my exams. The counsellor I sought support from at my university told me she was going to report me to the dean and sent me on my way home. This happened at a session I had attended in hopes of confessing my suicidal thoughts; it got way too real. I wasn’t faking – I was experiencing a complete loss of basic skills and the ability to use verbal communication to express it. No one seemed to understand it. The formal mental health system was accusing me of this being my fault, and I believed them wholeheartedly. This was happening because I was a failure. So I tried to end my life to save us all from having to deal with me anymore.   

When I read about these symptoms, THIS is how I knew completely that I am autistic.   

What’s changed with this knowledge

Therapy. Particularly neurodiverse-informed therapy, plus all the other kinds I can get my hands on. Again, it comes back to reprocessing much of my past and current life experiences from a gentler lens. It’s not easy, and it’s not quick.   

When I advocate for and with my children, I often explain how they will be more successful if provided more detailed instruction/room for questions, but most importantly – more iterations of the experience you’re trying to teach them. This is the most important accommodation we all need. I am slowly learning to allow myself this accommodation, even if it’s just inside myself so far. This developmental disorder does not go away once we reach adulthood. It is not my fault, nor do I need to apologize for this. I am working on this being how I see myself. I hope those from my generation and our children can apply a gentler lens to themselves and their feelings and experiences as autistic.  

Remaining Self-Diagnosed

Self-diagnosis, so far, has felt like enough. I did research and ultimately decide to pursue a diagnosis for myself – in the beginning. But, as time has gone on, I have now completed two autism assessment processes for my children this year. It hurts as I see what is and is not available as resources for them. There are not the same opportunities for service, support, accommodations and especially even the acknowledgement that there should be a standardized process for adult assessment.  

Ultimately, for now, I’ve decided to stick with self-diagnosis. The assessment process is long, expensive, and requires so much vulnerability and time that I don’t feel is valuable at this point. I found my children’s assessment processes very triggering. As I describe my children’s symptoms, I am describing myself too.

When I told my daughter she was autistic, she was very happy. I remember just sitting there watching her glee at having been correct in knowing herself in this way. It helped her feel seen. As it stands now, I don’t feel that the adult assessment process would bring me that same closure or sense of self-knowledge. So, for now, I am comfortable with self-identification.  

I think I decided not to pursue diagnosis because there will still be limited (if any) supports or services. I feel I’d spend a lot of money for the self-assurance of what I already know. I’m concerned that the formal diagnosis would lead to further stigma and increase my challenges in accessing health care and other necessary services. Being BIPOC and disabled is not a ticket I’m looking to face the world with.

What more people should know about autistic adults

I think the message I feel most comfortable with is this one: let go of your assumptions about what being on the spectrum means. It is not a death sentence; it is a gift. We get so caught up in the disability label that we forget how many special superpowers that come with our autism My hope is that all humans will begin to see all autistic humans as humans, not disabled humans, not less worthy — just acceptance of diversity at its most positive.  

My message for my past self would be this one: Love yourself, my friend. It’s not your fault. You’re okay, just as you are.