A son's diagnosis prompts a mom to consider if she's autistic too

By Daria Brown

I first wrote here in 2012 after my toddler suffered seizures and severe brain inflammation at age two. He was then diagnosed with autism at age three. Today my son is 15. It's been quite a journey along our unexpected path of disability. What I didn't anticipate was that learning about his diagnosis would lead me to wonder about whether I was also neurodivergent.

Looking back, I always felt different from all of my friends. I was the pickiest eater. I was the only one terrified of animals: I would cry if a house pet wasn't locked in another room when I was visiting. I also absolutely loved school and was the always the teacher's pet. My kindergarten and Grade 3 teachers independently told my mother that I would be the first female prime minister.

I was also very particular about what and how I'd play with my brother and my friends. I had countless collections that were meticulously organized.

I was the only person I knew who a list of America's Top 10 every week in the 1980s, and who would get distressed if I missed a week of America's Top 40 on the radio. I was the only one who would call the radio station to ask what song was being played if they didn't announce it, because I needed to know the band and song name for everything I listened to. I was the only one who mailed to request a club membership card to such things as Detroit Radio's Midnight Funk Association hosted by the Electrifying Mojo. Almost 24-7, I hear and sing songs in my head, and my memories are always visual.

Among my friends, I was the only one who answered sticker collection magazine pen pal requests and became pen pals with other teen girls around North America. I even went out of my way to visit a couple of them on different school trips or family vacations! I was the only one who started clubs for my friends, making membership cards and providing tokens of membership: It was crystals from my parents' old chandelier for our crystal club, and new nicknames for our valley girl club in the early 1980s. I was the only one who made music videos of my friends and I dancing to steps I choreographed to my favourite songs by Cyndi Lauper or Newcleus.

So, fast forward to COVID. I started reading more and more from autistic adult self-advocates on social media, and began listening to podcasts that interviewed autistic adult women. I recognized myself in the many traits and events they described and thought: 'That's just like me!' I recorded a podcast about this and did a handful of podcasts with The Autistic Self Advocate, Kieran Rose, who clearly believed that I am neurodivergent.

Then I put myself on the waitlist for a publicly-funded autism diagnosis in early 2022 and was finally called by CAMH this past April. I wanted to find out if I qualified for a diagnosis, but I didn't have a preference for the outcome.

I am a parent advocate, facilitating support meetings with parents of autistic children every week and figured that if I'm autistic, it gives me some 'street cred' in my professional role. Many parents of autistic children end up getting diagnosed and even more wonder if they are neurodivergent. My experience could help support my work with parents.

However, part of me was quite worried about the reaction from the person assessing me. What if they looked at me, a successful, fully functioning professional, and said I was wasting taxpayers' money by seeking a diagnosis when I have no disability? 

The diagnosis process was as I expected. The woman who conducted my assessment was wonderful, compassionate, and very respectful. She was completely empathetic to my experience and curious about my possible neurodivergence. What a relief and comfort.

It began with an interview of why I sought the diagnosis. Then my brother was interviewed about growing up with me, as we're only two years apart. I completed various surveys and did an online modified version of the ADOS with the psychiatrist. I was also interviewed extensively for numerous hours on three separate occasions about many aspects of my development and tendencies. 

During these assessments I recalled that in my graduate studies in Personality Psychology, I never quite 'fit' any of the researched categories of traits. For instance, on Extroversion-Introversion scales, I score in the middle. But on half of the items, I answer very extroverted, while on the other half, I respond as extremely introverted. It just averages my responses rather than accurately explaining the nuances. Similarly, on the measure of Conscientiousness, I score extremely high on items such as 'pays bills on time' (I always pay every bill on time) and extremely low on items like 'I always fill my car up with gas before it goes to empty' (I always end up on empty before realizing that I need more gas).

I also recalled the first website I made in the mid 90s for my college radio show on which I played electro-industrial music. I essentially described the industrial scene as attracting the neurodivergent, without calling it that. I named my show 'Distorted Circuitry' and this is what I wrote about it in the 1990s:

Distorted Circuitry is the name I came up with for my weekly show to describe the dark, energetic electronic music I played and coined 'industrial.' It seemed like the artists used sounds resembling something played from circuits, with the clanging noises and distorted vocals. Thus, it seemed like a fine name to me. 

Over the years, I realized that the name had a deeper significance. One could say that the industrial genre and what it has to say via song lyrics represents a 'distorted' view of the world, or at least a minority view. Perhaps those who enjoy it are made up of 'distorted circuitry' themselves, not fitting in with the norm, expressing themselves in ways that might seem quite alternative to the mainstream (e.g. extreme clothing, hair styles, piercings, tattoos).

But for me, Distorted Circuitry is not about a subculture; it's about craving something different—and that doesn't refer to superficial qualities like clothing or style. Maybe it's a subtle sense of humour, or experience, to suggest that seeking alternatives implies a distortion in one's make up.

I have always been overly persistent and overly focused on details. I can't tell a story without including every detail, so much so that my brother will ask me: 'Is this going to be one of your two minute stories that lasts 35 minutes?' 

I have been called 'a control freak' many times. My romantic partner in my late 20s told a friend that I had 'a rule book of seven volumes.' I have persistently struggled with time management. I made my brother late for school so many times because I couldn't get into the car on time. I made my family almost miss a flight for vacation because I took so long to get ready.

I have always been overly focused on justice. A friend commented that I had a very skewed sense of morality, but once you figured that out, I made sense.

So I guess it wasn't a complete surprise when the psychiatrist came back in May to announce that there was no doubt in her mind that I fit the profile of a late-diagnosed autistic female. She said I wouldn't have been picked up for diagnosis as a child.

She added that while most of her women clients seeking an autism diagnosis come in with debilitating co-occurrences, the only co-occurrence she could see in me was my extreme phobia of animals. She noted that I do have a few minor sensory differences, such as sensitivity to sunlight and vestibular movement, and an acute sense of smell. She said that I have really played to my strengths with my career, which was a great pleasure for her to witness.

Now, after reflecting on my diagnosis, I feel that autism is just how my brain works. It's part of who I am. It really shapes my personality and defines my sense of self. I am the way I am and have always been this way.

It isn't possible to change my desire for order. I will always anticipate every possible scenario that might happen in the future—dire or pleasant—in order to mentally prepare for action. I ruminate constantly, over anything and everything, and second guess social interactions as a habit. Perhaps these are areas of personal development I could work on, to decrease my stress levels. It's a good idea. And yet my graduate advisor saw me as one of the most carefree students he'd seen. It's easy for me to be carefree when I'm able to set aside my responsibilities for a day, an evening, or a week on vacation. This became rarer after motherhood, leading to feeling burnt out more frequently.

But what jumps out to me more than anything else is something one of my probably neurodivergent close friends said to me: 'Everybody's definition of normal is different.'

In my household, extreme worry was modelled for me. Emotional outbursts and avoidance of emotions were normal in our home. I recall telling a friend in high school that I never cry. I now realize I learned very well to mask my emotions in that environment, especially when I was told things like: 'Oh Daria, not everyone is as sensitive as you think they are.' My differences were pointed out to me constantly, both good and bad. It was my normal that I was different. And I liked it. It wasn't just my name, Daria, that was unique. 

When I met my ex-husband, he met my family and remarked that we could be in a sitcom, because it was so foreign to what he'd experienced. Indeed, his family was nothing like mine. They were different in their own way.

Now that I've been facilitating parent support meetings for seven years, I get a glimpse into the lives of other neurodivergent families and see that everybody's way of being in the world is unique.

For me, my autism qualities have served me well, caused me much distress, and made my motives often misunderstood. But they don't disable me as they have my son. My autism helps me relate to my son's experiences and I have been an exceptionally assertive and unforgiving champion for him. Our normal is neurodivergent, and this feels comfortable.

We have made friends with other neurodivergent families so that we feel at ease when out together. It's only when we attempt to blend in with typical society that I notice challenges, such as trying to attend 'typical' birthday parties, family events, riding on public transportation, and mingling in public settings. The supports we have learned to provide for our son are essential for peaceful living. I wish for all autistics to have this, and I advocate for this as much as I am capable.

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