Autism Diagnosis and Understanding

I look forward to a world where struggles with social interactions don’t weigh so heavily on a person. I recognize that opening with that kind of a statement might suggest this post will be negative, and I don’t really think it will be. I am optimistic about the world my children will inherit—one where the unique strengths of autistic people are celebrated; where we don’t focus on the weaknesses. Where the top Google searches are about autistic skills, not autistic deficiencies. The improvements to the diagnostic tools used to confirm and diagnose autism have led to an increase in diagnoses, but the accessibility of many of these tools has enabled people who don’t have access to a formal diagnosis the opportunity to self-diagnose. And while self diagnosis can certainly be dangerous when you tread cold and flu symptoms with old antibiotics from three years ago, but in the realm of neurodiversity, a self diagnosis just means recognizing challenges and using a framework—a tool, not a drug—to manage and overcome those challenges.

I knew I was autistic before I was diagnosed. The tools we have are fairly robust and not at all like Facebook IQ tests. And as more people come to realize their spot on the Scale of Neurodiversity, they share their stories and their struggles. We hear about how humans are a social species, and I hate that blanket statement because I am not a social person. And then I realize.. I stream on Twitch, I comment on TikTok, and I post on this blog. These are all ways of participating in the social nature of people—just because I don’t excel in face-to-face interactions, doesn’t mean I’m not social.

And it is in this online sharing space where autism is allowed to be autistic and people sharing their stories helps others through their journey. There’s this ages-old idea that a boy taking after his father is a moment to be celebrated. It’s often in some wholesome movie, where the boy picks up a hammer in his father’s woodworking shop or a toddler puts on a helmet to be like his racecar-driving daddy. I’m not sure why I went to woodworking and racecars—two paths very different from anything I’ve ever done.

But for me, seeing myself in one of my sons triggers a feeling of remorse. It feels like a curse that I have passed along to my child. I have a bit of a story about this—and it’s not a happy story—but it is relevant.

When I was between the ages of 16 and 23, autism was viewed as a completely debilitating illness that prevented basic functionality. So, when I was having autistic meltdowns, I was sent to hospitals for brain scans, checking for tumours, epilepsy, and other abnormalities. The doctors couldn’t find anything physically wrong with me, so they deduced that it must be mental. But there was another angle—I lived in a church-heavy town, and my classmates and one of my Battlefield 1942 friends, were convinced this was a spiritual problem. That I needed to seek out God and have Him heal me. I trusted my friends knew what they were talking about, so on a Sunday morning, I went to their church to seek help from God.

I’m sure it’s obvious where this is going, but I just want to pause for a moment. The memory of this series of events is still traumatic to me, and I need to space out my writing—yet I need to finish it now or it’s going to haunt me for the rest of the day until it’s done.

I showed up to this church, whose members took the time to personally welcome any new people—especially when they were brought by an existing member. I walked into a room with lights, colours, smells, and sounds that I was unfamiliar with. Where the only windows were stained glass—no view of the outside. And now, one by one, a hundred people are shaking my hand, welcoming me, even a few of the older ladies hugged me. I’m getting patted on the back by random men, spun around to face other people. Then, I’m asked to sit on an uncomfortable wooden bench in silence while we listen to a lecture in the front of the room. Randomly, grab the book in front of you and sing songs you don’t know the words to and have probably never heard, then sit down again and keep listening.

So when my friends and I went into the pastor’s office to discuss my challenges, it’s no wonder that I was visibly shaken—and visibly shaking. Overstimulated and uncomfortable, locked in a room with four people, still no windows, and I shut down and began having what appeared to be a seizure. My friends, convinced that I was possessed by a demon, put their hands on me and held me down, shouting at the demon to leave my body, while the pastor panicked and called emergency services. I was taken to the hospital and subjected to drug tests and a psychological evaluation, which netted me a weekend in the psychiatric ward of the hospital.

This ultimately led to my eventual diagnosis of post-traumatic stress disorder, but the experience leading up to that was so traumatic that it took years to recover. I spent years believing that I was, in fact, possessed by a demon, and that if I ever had a child, the demon would pass along to my child. I committed to never having children, and letting this curse die with me.

Long before autism came into the picture, but after my PTSD diagnosis, I got off the idea that it was a demon, and ultimately had children without the fear that I would pass a demon on to them. The remorse I feel today is because maybe I did pass a demon on to them—just not the Christian demon I grew up believing it was.

I promised this post would have a positive tone to it, and that’s still true. I told this story because with anyone diagnosed or self-diagnosed with autism, they would have a better chance to avoid that scenario entirely—even if they weren’t ready to declare themselves autistic to their contacts, they would recognize the difference between demon possession and autistic traits. The access people have to the Internet today, compared to the early 2000s, for diagnostic research and supportive communities, is completely different.

So if my kids do turn out to be autistic, they are going to have every opportunity to cope and work within their limitations and focus on their strengths. They will never be left to wonder what is wrong with them—they’ll never even be put in a position to believe something is wrong with them. They won’t go through their teenage years not understanding why it’s so easy for others and so hard for them. They will have access to a proper diagnosis and the tools and accommodations that come with that. And they will have their father, who has been through it or something similar, to lean on for the rest of his life.

Autistic people are autistic people’s best resource. And we have such easy and instant access to each other, and it’s an environment we are comfortable being in.

I would never want to suggest that autism is not a debilitating condition. But it is the best time in history to be autistic because awareness and support are at an all-time high and are only going to improve.

We’ve got this.