Inevitably, as summer nears its end, someone will say it. The neighbour watching the last whisp of gentle parenting leave my body as I urge the children to stop throwing basketballs at the car. The cashier as I spend my hard-earned money on Minecraft backpacks and shirts that say, “Skibidi Rizzler, no cap.”

Family and friends, who mean well after watching me try to support my older kid’s sudden special interest in extreme night fishing, but can’t possibly get it.

“I bet you’re looking forward to sending the kids back to school!”

As an autistic person myself, it’s a struggle not to give them all the old “Well, actually.”

“Well, actually, Brenda, are you familiar with IEPs? Here, I happen to have 45 pages of documents in my purse you can review at your leisure. Then we can discuss.”

“Well, actually, my youngest cries so hard at every single drop-off that the crossing guard a block away is sympathetic (the crossing guard, BRENDA!!), and my oldest calls home every two days with a nervous stomach, so no, I’m not particularly excited to inflict more trauma on the household.”

“Well, actually, there are so little resources available for special needs kids thanks to budget cuts and politics that I will spend every day until the end of June fighting for my children to get even the most basic of supports while also fielding daily emails and calls from teachers informing me my children misbehaved, much of which could have been avoided if THEY HAD APPROPRIATE SUPPORTS.”

“Well, actually, despite the absolute daily chaos and carnage, the fact that my television screen has Nintendo controller embedded in it, the fact that my backyard trampoline is now a fight cage, the fact I spent last night in the ER because my kid tried to cut his fishing line with a bread knife, and the fact that I have taken approximately 37,000 nerf bullets to the tit while trying to write the news, it’s still easier to have them home.”

The sentiment is everywhere

I am always inclined to tell the truth. It’s against my autistic nature to lie even when it’s the polite and reasonable thing to do.

But the truth about school isn’t exactly friendly chitchat or checkout line fodder. And I am trying to reduce my frequency of trauma dumping on acquaintances. So it’s easier to smile and pretend that, sure, like so many parents of neurotypical kids who have been run ragged all summer, I can’t wait to have my children out of my hair in September.

The sentiment is everywhere. Parenting memes, social media, commercials. Gleeful parents pop champagne after their kids get on the school bus in viral videos. I still remember that Staples commercial in the ‘90s where a set of overjoyed parents toss school supplies in their cart in time to “It’s the most wonderful time of the year.”

And I get it. These kids are crazy-making. For parents who work full-time, like me, there’s the added stress of paying for child-care, or day camps, and generally trying to keep your kids safe and supervised, never mind entertained, without using up all your leave or losing your job.

I know that I am extremely privileged and lucky in so many ways. I can afford (kind of) to stretch my budget for camps and babysitters. I have a house with a big backyard where my kids can run off some energy. I mostly work from home, so in a pinch, I can leave my kids to rot in front of screens for a day as needed even if it’s not ideal.

Still: It’s exhausting. Still: Not as exhausting as sending them to school.

School is heartache

My children are both objectively smart and inherently social. They love to learn. They’re generous and kind. Curious and inquisitive. Bright, chatty, friendly. I think they’re amazing. They are, objectively, incredible kids. Just ask me, their mother.

Yet I could write about how hard they find school for the entirety of the internet. I could type until my fingers fall off and I still wouldn’t be done. The heartaches, the misunderstandings, the separation anxiety, the refusal to go back after a bad day, my constant search for better options that simply don’t exist.

I’ve touched on some of it in previous posts, like the one where my kid got in trouble because he didn’t want to sit in a circle, and another where he was left out of a class art project because he wouldn’t conform to the exact rules.

• Read: A Black and White Boot

• Read: The Kind of Kid who Sits in a Circle

But those are just two of hundreds of examples of the daily struggles. Maybe more like thousands, at this point. Because for all their strengths, my kids also have many challenges. Not the least of which is they don’t necessarily “appear” autistic (air quotes because what does that even mean), so they are lower on the priority list for the few supports the school even has available. One-on-one EA support? After six years of advocating I’ve accepted it’s never going to happen, not even just at recess or lunch. But hey, maybe they’ll get wiggle seats if they’re lucky.

They don’t necessarily “appear” autistic — until shit hits the fan. Which, without proper supports, it always will.

My older kid, especially, has a lot of support needs. He struggles with impulse control and emotional regulation (he also has ADHD). He’s easily overwhelmed and overstimulated. He has an overly sensitive sense of fairness and justice. He’s gullible and will do nearly anything for a laugh. He masks by acting like the class clown, but now that he’s going into Grade 5, the kids don’t find it as funny anymore. He struggles with transitions, like the end of lunch, and unsupervised social time, like at recess. He’s easily bored. He will argue with teachers when he thinks he’s right about something (spoiler: he always thinks he’s right). He doesn’t always understand when people are sarcastic, or teasing him, or conversely, when he is annoying others.

He gets good grades and is often excited to see his friends but school is generally hell for him. My heart cracks in two every time I watch him skateboard toward the doors, wondering what I’ll get a call about that day. A fight at recess over a stick he thought was his? A complaint that he climbed on the shed after someone threw his stuffy up there? The lunch monitor informing me he exploded his juice box on purpose? Or will he just run home crying because someone left a mean note on his locker?

He’s had some wonderful teachers who have brought me to tears with their kindness. He’s also had some who are not so wonderful. Everyone is trying their best and I sympathize with their lack of resources. But no one really understands autism, or the different ways it can show up. And without that understanding, my dazzling child is often characterized as disobedient, difficult, and defiant.

My little one, the meatball, has had an easier go so far, but that’s because he hasn’t even started Grade 1 yet. Kindergarten is lower stakes. But even then, he sobbed like his heart was breaking at every single drop-off for nearly two years. Because I live walking distance from the school, I get to hear him scream for me my entire walk back home. “MAMAAAA! MAMAAAA!”

He also still sucks his thumb and carries a gigantic security blanket wherever he goes. He’s a wiggle-butt who never stops moving. He’s maybe a math genius but he struggles to get his shoes on. His teachers love him so far because he’s brilliant but quiet. A sensitive little soul. I worry about him in different ways. He’s unlikely to advocate for himself, ever.

It’s not just us

Research shows that autistic kids frequently experience school as stressful, isolating and exhausting.

As one study points out, this can be due to “sensory overload and barriers in reciprocal interaction with peers and teachers,” which over time, led to stress, anger, anxiety and panic.

Autistic kids are also far more likely to be bullied, which can lead to depression, anxiety, and social withdrawal.

While some studies show that autistic kids are often eager to learn, they are far more likely to miss school. For instance, in one massive New Zealand study, fewer than half of the autistic schoolchildren attended school for more than 90 per cent of the year, compared with over 60 per cent of non-autistic children. And chronic absence, in which kids missed nearly a third of school days or more, was more than twice as common.

A recent Ontario study where researchers interviewed caregivers of autistic schoolchildren found that 42.3 per cent reported that their autistic children had experienced some form of school exclusion. Bullying by peers and inadequate training and support for school staff were two of the strongest indicators for exclusion.

“These exclusions have cascading effects on families, forcing parents to miss work and jeopardize their employment. They also drive some households closer to poverty,” the researchers wrote in an Op-Ed.

In previous research by the same authors, they found that many parents of autistic children, particularly mothers, “struggle to maintain full-time employment as they need to be available to care for their children during school hours.”

Hi, it’s me. I’m mothers.

At home, I can protect them

I’m not sure I’ve ever gone more than a few days without a call from the school to pick a kid up with an anxious tummy, or dealt with a kid who refuses to go in the first place.

Then there are the near-daily calls, emails and meetings in which I advocate for their supports, or insist their IEPs be followed, or offer to walk my kid through the halls at lunch for a body break, or explain for the hundredth time that my kid needs rest time during the day or he will misbehave, or get a call that — shocker — he seemed like he didn’t need rest time and he misbehaved.

And then, every September, we start the process all over again with a new teacher. Sometimes, with new admin. This year we will have a new vice-principal and a new student support teacher, thus erasing the last several years of gains I’d made with their predecessors.

Honestly, it’s a full-time job to have two autistic kids in school. That’s on top of my actual full-time job. Never mind that as an autistic person myself I’m already prone to burnout and all these constant stressful social interactions are slowly killing me. I often can’t sleep during the school year because I’m too worried, anxious and overwhelmed.

At home, at least I can protect them from a world that can be cruel to kids who are different. I can provide a supportive environment where they can follow their own interests. They can move when they need to move, and rest when they need to rest. I can guide their interactions, remind them to be gentle, remind them how to talk to others, remind them to be kind to each other and themselves.

This summer, I have watched them thrive in weeklong day camps, because one week is just enough time to hang out with other kids on a surface level without social hierarchies, cliques and bullying to enter the chat. I can select activities I know will hold their interests, like science and trampoline. I’ve watched them play soccer, and take swimming lessons, and eat way too much ice cream. Kid stuff.

My husband and I have supported one son in his goal of catching every fish in eastern Ontario, and the other in his goal of… pretending to be a cat. (The cat’s name is Henry. Henry talks in the third person, but also in meows).

We are are utterly exhausted. Dead. Corpses. But the kids have thrived.

So, yes, like so many other parents this time of year, I am fried. I have nothing left to give, really, and there’s still a week left of summer break. Hopefully they can entertain themselves in the kill cage, I mean, trampoline.

But, no, I’m not looking forward to sending my kids back to school. Not at all. Not even a little bit.

I’d rather take another 37,000 nerf bullets to the tit.

That’s what I tell my older child when he gets in trouble at camp, or school, and plays his favourite card: “My brain told me to do it and it was too hard to stop myself because of my au-TISM.”

(He puts the emphasis on the ‘tism and I don’t correct him because I find it adorable. The excuse, not so much).

No, I tell him. Autism didn’t make you say “fuck” in class (even if your teacher wasn’t following your IEP), or whip that kid with a jump rope (even if he did call you names), or convince your little brother to sniff another kid’s butt and then punch the kid in the face when he pushed your little brother off the bleachers (I… can’t. I’m so tired, guys). And, no, ADHD didn’t make you do those things, either, although god knows it didn’t help.

Autism might help explain why we do certain things, but it doesn’t excuse the behaviour if you know better. And sometimes, autism has nothing to do with it. Sometimes you’re just a 10-year-old boy who is now grounded off his laptop for a week.

I reflect a lot on my own behaviours now that I’ve been diagnosed autistic. It comes with the territory. You can’t find out you have a differently wired brain at age 41 and not look back on every action, thought and memory through a new lens.

It doesn’t happen right away, mind you. You don’t become self-enlightened the moment the psychologist says, “Ma’am, you have the ‘tism.” Your entire life doesn’t immediately click into place, nor do the reasons for your behaviours. I wish. I’d walk around handing out individualized apology cards.

“Sorry I told you my birth story at the grocery checkout. I’m autistic. You’re just a teen cashier who didn’t deserve to learn about third-degree vaginal tears this way.”

Anyway. Like, I tell my kids: autism isn’t an excuse. But it does help explain so much. At least they know (even if my eldest is learning to weaponize his diagnosis). Meanwhile, I’ve spent the last 40 or so years constructing a character assessment of myself without having all the information.

With that, here are 3 traits that I thought were just flaws, but have a deeper meaning.

1. I’m vain

I see you scrolling back to the sunflower photo and muttering, “really?” No offence taken. The sad mom bun and lion’s mane of fly-aways. The shudder knee cellulite. The forehead crease that can hold toothpicks (I’ve tested it!) The facial expression that screams, “we have been in this sunflower maze for 50 fucking years and I am done with making magical memories but, sure, cheese!”

Yes, that person is vain. It used to nearly paralyze me. I can’t tell you how hard it is to post what I see as a bad photo, even today, when I’m deeply in my “do not give a fuck” era. It all stems from extremely deep insecurities and the need to control how I appear physically.

Because I may seem vain, but it’s because I’ve been trying to keep the terrible truth hidden for 40 years. Which is that, actually, I am hideously ugly.

OK, calm down, and do not flood my comments with positive affirmations (ew). I’ve grown, matured, learned to appreciate and have some pride in my own appearance, and more importantly, generally stopped caring. But for most of my life, I carried the very heavy burden of feeling intensely ugly, and doing my best to hide it from others.

As a child, I would scream and cry about my frizzy hair, my glasses, my nose that was too big for my face. I started wearing contact lenses full-time by age 11, used all my babysitting money for hair products, and couldn’t be seen without a full face of makeup by the time I was 12.

I’d spend hours on my morning routine, often sobbing, applying and reapplying makeup, then wiping it all off and starting over with another shower. I’d miss the bus to high school trying to cover up a blemish. I would panic if I didn’t have oil-blotting papers and a powder compact on me at all times. I mapped out the emptiest bathrooms in my school, and would visit them half way through the day to wash off all my makeup and start again. It was exhausting and terrible.

My high school friends would joke that I was inseparable from my lip gloss. My university friends would joke that I always carried a hair straightener. I begged my boyfriends for constant reassurance that I looked presentable. I was, on the surface, vain. Underneath, it was the opposite. How I wish I could go back in time and give that poor girl some grace (and perhaps some sertraline).

Looking back now, I see that my obsession with my appearance was really a form of masking. My intense concern with hair, makeup, clothes, skin, and looking “right” was about control, perfectionism and desperately trying to fit into a world where I always felt wrong. It was my armour. It still is.

“In a very literal way makeup, clothes, hair, etc became a form of masking for me𓈒 Like, if I'm pretty enough people won't bully me anymore,” a teen girl recently wrote on an autism subreddit.

“But even with makeup and cute clothes I feel like an alien and utterly revolting,” she added.

Ugh. Utterly revolting. I feel that in the pit of my stomach because I was the same.

Honestly, I’m not sure why I stopped caring as much. Aging likely had a lot to do with it. And motherhood. Realizing that my appearance was the least important part of me. And, yes, the sertraline. But I still wear makeup and contact lenses every single day. I still own an emotional-support hair straightener. And if I go more than a few days without exercise, I still have to remind myself I’m not actually morbidly obese even though I feel like I am.

My kid asked me the other day why I never wear my hair curly. So I took it down from my mom bun to show him my natural look. He looked at me critically and raised an eyebrow.

“Oh,” he finally uttered.

Kid, tell me about it.

2. I’m irritable

That’s a nice way of saying I can be a real cranky bitch. Speaking of which, I’m already cranky this post is taking me so long to write so I’ll try to keep this short.

I don’t like when people talk to me in the morning. I don’t like when people are in my space. I don’t like chitchat. I don’t like when people touch my belongings. I don’t like when people ask me questions. I don’t like background noise. I don’t like repeating myself. I don’t like making plans. I don’t like changes to my routine or plans. I don’t like when my mother says “Paw Patrols” instead of “Paw Patrol,” I don’t like when people sing along to songs in movies, I don’t like when my barista calls my skim milk cappuccino a non-fat cappuccino (maybe I just like skim milk, Saffron!), I don’t like when people yawn (yes, I get it, you’re tired, GROW UP), I don’t like when people clang their cutlery, I don’t like when someone asks “are you sleeping?” (NOT ANYMORE I’M NOT), I don’t like when people lick their fingers, I don’t like when people have bare feet, I don’t like the way my husband pronounces soup like soup!, why are you popping the p, JESUS CHRIST.

I could go on. I really want to, in fact. AIR ALL THE GRIEVANCES. I have many. But I think you get the point. I’m irritable.

But have I always been this way?

You tell me.

Yup. I’m a lifelong absolute treat.

Here’s what I know now. Autistic people can sometimes act grumpy, impatient, or irritable when the underlying experience is actually overwhelm, exhaustion, anxiety, discomfort, or the effort of coping.

Sometimes, it’s sensory overload. Like if my kids are both talking to me, the TV is on in the background, a ventilation fan is humming somewhere in the house, and my husband asks me to repeat myself, the outcome is not going to be pretty.

Sometimes, it’s autistic fatigue. It takes energy to constantly process sensory information, navigate social situations, make decisions and generally try to exist as a human in a neurotypical world. My patience for — gestures broadly — wears thin when my energy is depleted.

Autistic people are notorious for struggling with change and transitions. It’s a hallmark trait. So is rigidity. My kids struggle with this big-time. And while I might not throw a five-alarm meltdown or scream until I puke if I have to leave the house unexpectedly or someone touches my mugs (just, don’t), I’m not necessarily going to be happy about it, either. Routine is comfort. It takes a surprising amount of mental recalibration to pivot.

Does that excuse my behaviour if I snap at my husband when he asks if I want any soup-PUH? No. Sometimes, I’m just a bitch.

(OK, I think we might have another slogan for the autism merch, alongside proactive potato)

3. I’m blunt

God help me, I have never had any qualms about sharing what’s on my mind or answering questions a little too truthfully.

Like in high school, when an English teacher asked why I wanted in her senior creative writing seminar, and I replied, “because I need to raise my GPA,” and she guffawed at me. (Reader, I made it into the seminar, and did indeed raise my average, but it was incredibly uncomfortable).

Or in job interviews, when prospective employers would ask why I want to work in Shoppers Drug Mart, or in the call centre, and I would say, “I don’t, especially, but I need money.”

To this day, I have to remind myself that acquaintances and colleagues don’t want my life story and a detailed history of my lower back pain when they greet me with, “how are you?” In fact, I should really put a post-it on my computer monitor that says “just say ‘fine, thanks!’”

Autistic people are often described as “blunt.” That’s because we tend to prioritize accuracy and clarity in our communication and don’t always understand the social cushioning, nuance or norms in neurotypical conversations. We’re also literal as hell.

On the bright side, I’m useful to have around when you need information, and I’m shockingly resourceful in a pinch. Unfortunately, it’s because I have very little shame. Wondering if someone is still using that chair? Don’t worry—I’ll ask. Does that person in the bar look familiar? I’ll find out where they’re from. You think that guy is cute? I’ll find out if he wants to hook up.

My, directness, shall we say, has at least served me well as a journalist. Colleagues will often ask how I got a certain story, or someone on the record, such a quick response, or a good quote. And I’m like: Because I asked?

Sometimes, I unwittingly embarrass people. Sometimes, I make an ass of myself. But sometimes I am exactly the kind of person you want around.

Case in point: My sister and I took my mother on a sing-a-long Christmas carol trolley ride last December. Yes, I am aware every word in that sentence is a LITERAL NIGHTMARE. But my mom loves to sing, and her birthday is two days before Christmas, so god help me, I agreed and we booked tickets. Even though the trolley ride would be 90 minutes long (my god).

About 10 minutes before we were due to board, all three of us realized this was simply not an activity we could participate in sober. And before any of you suggest that’s not a very healthy mentality, I repeat: sing-a-long Christmas carol trolley ride.

But how to sneak drinks past the driver, and the tour guide in striped tights who told us to call her Stella the Elf? How do we even acquire said drinks in the next 10 minutes? Ask an Autistic. (Guys! A third merch option!)

My mother and sister said it was impossible. I said, “be right back,” took off into the night like an alcoholic superhero in mom jeans, and returned eight minutes later with a chilled sauvignon blanc divided into three A&W soda cups. With straws, because we’re civilized.

My sister looked at me with what I hope was awe and asked, “how?”

I shrugged. “Easy. I asked A&W if they would give me three empty cups. Then I asked the bartender at Jack Astor’s if I could buy an entire bottle of wine, and take it with me. She said yes. I asked if she would pour it into my cups. She said no. So I did it myself in that alley over there and left the bottle in the recycling.”

“You poured us wine in an alley?!”

“A New Zealand sauv blanc.”

“Ooh.”

Anyway, we survived the trolley ride and my mom had a great time. Autism saves. (Fourth merch option).

“Mama, what kind of brain do you have?”

It’s a question my kids often asked me ever since my older son was diagnosed autistic when he was barely five. The signs were always there, the psychologist told me. Like stars in the sky. We just needed to connect them into a constellation.

I explained to my son that everyone’s brain is different; his is autistic, Daddy’s has ADHD. His brother, a baby at the time, had a meatball brain (he really was a delightful little meatball, although he, too, would eventually be diagnosed with an autistic brain of his own).

We still say “autistic brain” four years later. But my own?

“An anxious brain,” I might answer, a nod to my anxiety disorder. Or maybe, “I don’t really know,” which was also true. But the more I learned about my son’s meltdowns over scratchy clothing tags, and then his younger brother’s love of colour-coding his toy cars, the more I did, in fact, really know.

The signs were always there for me, too. But they’re different in women. Especially if you’ve made it this far thinking you were just anxious, depressed, awkward, faking it at being an adult, like you’re actually only smart in a few highly specific areas and kind of shockingly terrible in others.

I’d felt like a hypocrite back then, hiding my own diagnosis while advocating for my boys. But I felt sheepish admitting that, at age 41, I pursued an autism assessment. What was the point? I’m a grownup. I have a job. A house. A family. A colour-coded bookshelf and a mug collection that no one can touch but me (right, there it is).

I accomplished what I was meant to accomplish, even if it felt harder for me in ways I didn’t understand. Wasn’t it kind of vain, then, to put a label on myself? To what end? Just to say I am a certain way?

I’m not sure what I hoped hearing the words, “you are autistic” would change. That suddenly my true self would emerge, confident in my awkwardness, maybe with a new special skill? (Math? Please be math). But of course, nothing changed, because the problem with masking your entire life is you don’t know where the mask stops and you begin. You question everything. Do I even like restaurants, even though I’m always cold in them and feel like everyone is watching me and I wind up making weird comments like, “do you use real potatoes in your mashed potatoes?” and then re-live that moment for the next 15 years?

I was diagnosed at 41

I was officially diagnosed two years ago. My youngest, then four, was on the wait-list for his own assessment, and in filling in his paperwork, the answers so familiar, I just knew. I knew, but still, I wanted to officially know. Then, as soon as I did, I wished I didn’t.

I hardly told anyone, but if I did, I made sure to add, “I’m not going to make autism my entire personality.” When, of course, it is. Just like I tell my boys that everything I love about them is autism, everything I love (and dislike) about myself is autism, too.

It’s why ceiling fans make me dizzy and I still vividly remember that one time in Grade 7 that I put on a scratchy sweater when my skin was still soft from a shower.

It’s why I can read a book in two days, but also can’t drive a car, am truly abysmal at math, and will often make plans with other people only to find excuses to break them so I can lie under my blankets with my snacks and my book like a gremlin until I stop wanting to pull off my skin (incidentally, it’s also why I pull off my skin).

It’s why I excel at journalism research, observing people, picking up the small details other people might miss. It’s why I can become an expert on whatever topic I’m writing about in a day, as long as it interests me. And the fact that I’ve made a living having one-sided, scripted conversations where all I have to do is ask questions to get information and then say, “OK, bye forever,” is probably why it took me so long to realize I’m not a natural at social interactions.

In fact, the psychologist who diagnosed me said it’s remarkable that I carved out the perfect career for myself — one that elevates my skills while hiding my struggles. I can become “obsessed” with whatever interests me and focus intently on my subject matter. I have zero qualms asking direct questions. My verbal and language skills are “superior,” according to the IQ tests she had me take, in contrast to some other areas of intelligence, which were, um, woof. But might explain why I get lost finding the bathroom?

Writing, then, was the correct choice. And aren’t all writers just a little quirky? I might have sought out a diagnosis sooner if I’d chosen a different career path (unfortunately, it turns out I have very few other employable skills).

In real-life social situations, I sometimes slip into reporter mode, asking too-personal questions, sharing too much back, because isn’t that how this works? The talking bit? And that’s how I’ve become known among my friends as an outrageous over-sharer and a storyteller, with a funny personal anecdote prepared for any conversation. What they don’t know is I practice those anecdotes in the shower every morning, or in bed, when I should be sleeping but my mind won’t turn off.

‘I didn’t want to be the odd one’

I wanted so badly to tell my boys my diagnosis that summer, but I knew they wouldn’t keep it to themselves, even if I asked. And asking would teach them autism is something to hide, at the same time I’ve been trying to teach them that they should always, always, be their weird and wonderful perfect selves. So I didn’t. I wasn’t ready for my kids to out me.

But then last November, in the car, we told my youngest that he had an autistic brain, too. The signs were all there, but you had to know to look. It’s the quiet ones like him who slip through the cracks, the psychologist told us. My little meatball doesn’t complain. He doesn’t really have meltdowns. He just silently and stubbornly is his own person. Content, good-natured, scary smart, would rather starve than eat anything other than shell-shaped macaroni or grilled cheese. Happy to do his own thing, as long as he can smell the security blanket he always carries. Vanilla ice cream autistic, as opposed to my oldest, who is spicy Doritos autistic.

My oldest cheered for his little brother. “You have an autistic brain!” My youngest was quiet, taking in the news, then replied, “Yeah! I have an awk-tistic brain!”

That was the moment I realized hiding my own diagnosis even a minute longer was a disservice to the two most important humans in my world. So I just spit it out, whatever the consequences. (Those would come a day later, when my youngest proudly informed Grandma he had an awk-tistic brain, “and so does Mama.”)

So, I turned around to look at my boys in the back seat. “Well, guess what guys? I had some tests over the summer and I have an autistic brain, too!”

“Mama,” asked my youngest, “do you mean awk-tistic?”

“Sure.”

More cheering. They asked if I would be coming to occupational therapy with them. I said no, I’m 41 and am what I am. Then we continued our drive downtown to buy puzzles (weird, are we sure about the diagnoses?)

Later, when we walked back to the car, I held my eldest’s hand and asked him how he felt about me and his brother being diagnosed, too.

“Really happy,” he said. “I didn’t want to be the odd one.”

There. Right there. That was the moment I realized why I got assessed even though I knew. For him. For them. To be clear, it is not selfish or vain to want to understand yourself, either. I think maybe it’s kind of brave. But for me, it was for my boys. My spicy Dorito and my vanilla soft serve, my sun and my moon. So they will never, ever feel alone in a neurotypical world.

The fourth drawer

Autism is also, I think, why it took me six months to realize I had a fourth dresser drawer. I wish I was kidding. I’d been cramming my shirts into the top three drawers for a year. Grumbling about how I need more clothing space. Three drawers; one, two, three. Tanks, short sleeves, long sleeves. A pattern. Never once realizing I had a fourth empty drawer. It’s not that I thought it was full. It’s that I didn’t even know it existed.

Until a morning in mid-November when I was putting away laundry, one, two, three… wait… what? Where the fuck did this drawer come from? My ego may never recover. But at least I have sweater space.

And that’s also what it feels like to realize you’re autistic in your forties. Like everything has always been a little more of a struggle, and you don’t know why. Like you’re constantly trying to find more space that doesn’t exist. And then one day you realize there was a fourth drawer the entire time.

The signs were always there. You just had to know to look.

There’s the same island vacation I take over and over again, each time hoping this trip will have better weather (it never does). The same city I visit on the same train, where I get off at the same station each time and wander on foot. The terrible airport with the circular ramp. The student house I somehow still live in and am currently trying to make livable for my children. The biology class I never actually passed. The journalism degree I never finished.

The ex-boyfriend I still see on the side. The suburban house I keep forgetting and then regretting I bought. Feuds with friends and family members. The pregnancy scares that feel so real that I wake up and think, “fuck, I can’t believe I’m having another baby AT MY AGE,” before I remember I closed up shop years ago, thank you Cheesus.

It. Is. A. Lot.

For as long as I can remember, I have always had extremely vivid dreams. Most of them are recurring, and continuous. They pick up where they left off, like a chapter book or television series.

For instance, let’s take my island vacation dream, which I’ve had every few nights for maybe a decade or so. I’ve now been to this island so many times that I can find it on the map that also exists in my dreams (for a long time I wasn’t sure which island it was… but I think I’ve narrowed it down to off the coast of Cuba?) After much trial and error, I now stay at a preferred hotel so often I get a small discount for re-booking. The elevators are crazy and sometimes go sideways or even outside the building, but there’s a room on the fourth floor with a wraparound balcony if you can get there. And a rooftop pool that’s pretty nice if you don’t get lost in the maze of stairwells.

I can see the lobby bar as I write this and tell you the hours of the lunch buffet. I’ve convinced my dream family and kids to come with me a few times now, with varying results (even my dream kids don’t travel well). And everyone admits it’s a very nice hotel even if it’s always somehow stormy outside and the ocean waves are too big for swimming.

I don’t talk about my dreams very often because, when I do, people tend to look at me like my hair is on fire (also a dream I have had, but usually it’s just some mild singeing). Take my sister, for instance. Sometimes I tell her about my recurring, chapter-like dreams and in return she tells me “What the actual fuck? Are you, like, OK?”

Because it turns out that not everyone has weird-ass dreams like me. In fact, most people I have talked to barely remember theirs. They just… sleep. What’s that like, I wonder? Do they awaken refreshed and revitalized instead of annoyed, exhausted, anxious and confused?

My kid is the same way

I know exactly one other person who dreams in excruciating, life-like detail, the same way I do: my kid.

Not the little autistic meatball that lies like a corpse beside me in bed. No, he falls asleep blissfully sucking his thumb and remembers nothing.

I’m talking about the older one with autism, ADHD, and clinical anxiety who thrashes around in a tent all night then shoots out of bed in the morning like a bolt of lightening.

Not only does he also dream in chapters, but he sometimes has lucid dreams, too. You know, the kind where you’re aware you are dreaming while you are still asleep but can’t wake yourself up.

“Oh, I know a trick for those,” I told him in the car recently.

“You need to lie down, like, in your dream, and slam your legs on the floor as hard as you can. That would usually wake me up when I was a kid.”

My kid nodded earnestly while my husband looked at us both in abject horror. He also falls asleep immediately and doesn’t remember his dreams. MUST BE NICE.

Anyway, all this to say, I’ve been wondering lately whether autism plays a role in the kinds of dreams we have. It would make sense, wouldn’t it? After all, our brains are wired differently. We also tend to have more sleep issues in general, and many autistic people report they have difficulty slowing down their minds at night.

Couldn’t that lead to dreams that are… what’s the scientific term… completely fucked up?

The autism-dream connection

Intense dreaming certainly isn’t unique to autism.

The majority of people have recurring dreams at some point in their lives, according to the Sleep Foundation. And a recent study that surveyed participants across 16 different countries found that 54 per cent could recall their dreams “frequently,” which the authors defined as at least weekly.

But what could make someone more prone to this?

Last year, researchers told Time Magazine that “people who feel ineffective in their lives and disconnected from others are more likely to experience negative recurring dreams.”

The Sleep Foundation notes that vivid dreams can be linked with sleep disruptions, trauma and mental health conditions (among other behavioural and physical causes).

Hmm, what kind of people do I know who might feel disconnected or ineffective, sleep poorly, have experienced past trauma, or have mental health conditions?

That said, there’s not exactly an abundance of research on autism and dreams, and a lot of it is conflicting.

Some research suggests autistic people may actually recall their dreams less frequently than their neurotypical counterparts. A recent review of the literature that does exist suggests that autistic individuals have distinct dream patterns with reduced social interaction and fewer emotional elements. Which, sigh.

But as other studies have noted, “little is known about the internal mental experiences of individuals with ASD.” In 2023, a group of researchers sought to change that by studying daydreams in autistic people, and found them more likely to spend time in what they called immersive daydreams — intense absorption in elaborate mental fantasy scenarios, stories, and worlds.

They noted that these intense daydreams “may provide an opportunity for individuals to escape such challenges and retreat into a more ideal and controllable reality. As such, this activity may be compelling for individuals with ASD who face similar challenges.”

Dreams can help us organize our thoughts

I know I daydream a lot. It’s often how I fall asleep, come to think of it. When I can’t turn my brain off at night, or stop my excessive worrying, I will whip up extensive fantasies to try to relax. Many of these fantasies are about going on vacation OH MY GOD IT’S ME I’M THE PROBLEM.

Sorry, I just had to spend 15 minutes blinking rapidly while I processed that revelation.

Anyway.

Psychologist Emily Cook, who is autistic, wrote recently that dreams deliver clarity in a chaotic world. She hypothesizes this may also be the reason so many autistics are drawn to fantasy media, like television and video games.

Dreams, she adds, can help autistic people reflect on what happened during the day and organize their thoughts.

“Dreams might not have all the answers, but at least they give us permission to speak our own language,” she wrote in Medium.

And sharing your dreams with other people increases empathy, according to Cook. So what I’m hearing is… I should tell MORE people about the rooftop pool at the wacky hotel on the mystery island?

I’m not sure about that. And I also haven’t really answered my own question. Do autistic people dream differently than neurotypicals? I’m not convinced one way or the other.

But I’d like to see a normie survive (and enjoy) the bedroom in my old student house that I have been reorganizing and cleaning for about 15 years in my sleep. Last night I even got some furniture into storage and let me tell you — it was satisfying. I expect the room to be tidy by the time I’m 60.

Then I guess I’ll tackle the kitchen on the nights I’m not lost in a hotel stairwell or sneaking out to visit my ex (ugh).

I can look back now on posts where I’m like, “isn’t it adorable that my kid has to hold an umbrella over him while he eats?!” and, “oops, we were asked not to return to toddler soccer after my spirited little guy led a rebellion through the halls of the school!” and, “lol here’s my kid and his 27 mini pumpkins all lined up in a row,” and think… oh, Natalie, you sweet summer child.

My eldest was diagnosed when he was five. Next came his younger brother. Then me. Somewhere in there my husband was diagnosed with ADHD. We are autism house now. We are joy and chaos and inclusivity and mess and did I mention chaos?

I usually have a good laugh at my own expense now when I see these memories pop up from the before times. Because, truly — what the fuck did I know? But it’s the sleep posts that really get me. The “so when do the babies let you put them DOWN?” and “they’re all nocturnal, right?” and “selfie of me and hubby celebrating our wedding anniversary in the car because our toddler only sleeps in a moving vehicle so we’ve been driving in the suburbs for the past 4 hours! We got McDonald’s!” memories.

But my favourite memory that pops up around this time each year is Candyland Penguin.

Picture it: my kid is almost four, and he still doesn’t sleep. At this point we have tried everything short of shooting him with a tranquilizer dart. He might have been the first baby to outsmart sleep training and multiple sleep consultants. He would not be worn in a carrier even as an infant. He has zero interest in co-sleeping. Bedtime routines mean nothing. He doesn’t want to be alone, but if you stay in his room, he will just try to play with you all night, and if you leave him, he will either come out to find you over and over or scream bloody murder. The more you try to keep him in bed, the more frantic he becomes. He throws books, toys, and fists at the parent in his room. He will do gymnastics until he passes out mid-scream sometime around 2am, then wake up already in motion three hours later. He defies biology and rational thought. I’ve fantasized about getting hit by a car just so I can be hospitalized and lie down.

I’ve also, for what it’s worth, just had another baby who also sucks at sleep, but not to the same extreme. Or maybe I’m just so shell-shocked at this point nothing phases me. Hard to tell. It was a blur.

Anyway, we hadn’t yet moved to Kingston, so we were visiting for the weekend and staying with my sister. I think maybe this was the COVID bubble era? She also had a new baby, just a few months older than my youngest. But this baby could be put in her crib “awake but drowsy” and stay there until morning. Who knew this wasn’t just a myth?! All this to say, while I was fighting the good fight trying to get my baby to sleep in the den, my sister was available to attempt to get my four year old to sleep in the guest room.

Like so many well-meaning family members, I think maybe she was convinced he just needed the right approach. Like, maybe I wasn’t being firm enough, or structured enough, or soothing enough, or something, anything, because surely children do, eventually, sleep?

Not this kid

Well, here’s how that went. What follows is the exact Facebook post I wrote that weekend, minus names (pls remember I have a dark sense of humour and would never actually gag my child):

Kids won’t stay in bed? Regretting your decision to procreate? Have you tried the Candyland Penguin Sleep Training Method? What do you mean you haven’t heard of it? Maybe you should join that 17th sleep training Facebook group after all.

So kid’s sleep has been a complete screaming shitshow lately. Is it the pandemic? Is it the new brother? Is it the upcoming move? Is it the limbic leap? Is it attention-seeking? Is he overtired? Undertired? Anxious? Four?

Yes.

I’ve oscillated between researching sleep-based reward charts, and kid-proof shackles. Weighted blankets, and straight jackets. It’s so bad we almost didn’t visit my sister this weekend, but thank god we did, and thank god she panicked telling him a bedtime story, because now we have Candyland Penguin (trademark pending).

Sister: *walks back downstairs after tucking Kid in, looking very sheepish and scared*
Me: Why don’t I hear screaming? Did you gag him?
Sister: I did something bad.
Me: We can remove the gag when he passes out.
Sister: No... he wanted me to make up a story about a candy land... he had so many questions... I panicked ... and now he thinks a Candyland Penguin is going to visit him in the night and leave a circle of melted chocolate around his mouth if he stays in bed.
Me: ... pardon me?
Sister: He’s expecting Candyland Penguin to leave him chocolate.
Me: In his... mouth?
Sister: Yes.
Me: I’m sorry, a Penguin is doing this?
Sister: Yes, from Candyland.
Me: So if he stays in bed, I’m supposed to somehow orchestrate a penguin that leaves chocolate in his mouth?
Sister: I’m sorry.

Meanwhile, back upstairs, Husband is texting me from Kid’s room.

Husband: He has a lot of questions about a Candyland Penguin?
Me: I also have many questions.
Husband: He keeps getting out of bed to ask how the penguin leaves him chocolate in his mouth.
Sister: I’M SORRY.
Me: We need to make this story more probable. I don’t want to mess him up with totally ridiculous magical tales that could never happen in real life. Tell him Candyland Penguin will leave three chocolates outside his door overnight, but every time he gets out of bed the penguin eats one.

Night one of Candyland Penguin Sleep Training was a success. So were nights two and three (minus one bed exodus).

Kid’s having the best sleeps he’s had in months. No bedtime tantrums. We have our evenings back. And all I have to do is make sure a magical penguin delivers individually wrapped fancy chocolates outside his room every night for the rest of his childhood.

Please join me for my next parenting workshop: Candyland Penguin And The Pediatric Dentist.

It stopped working five days later. But Candyland Penguin lives on in my heart forever.

Many autistic kids have sleep problems

It’s funny now to look back now on how desperate we all were to get some sleep. I mean, even my sister, who successfully gentle-sleep trained my niece so well the kid is still the best sleeper I know, broke after about five minutes of trying with my kid. She probably marched into that bedroom thinking, “I’m gonna fix this once and for all,” and somehow instead word-vomited hallucinogenic bedtime lore about a magical penguin from a candy land.

I can’t fault her. Trying to get my kids to sleep is crazy-making. And this seems to be true for most autistic kids I know. In fact, I can’t think of a single parent of autistic kids who isn’t chronically sleep deprived. My husband, who isn’t autistic but has ADHD, proudly tells stories about how his mom would find him playing the drums on the pots and pans in the kitchen at 2 a.m. when he was a kid. Not for nothing, he’s an only child.

It’s funny, but it also isn’t. Because no one is happy or thriving in these situations. Not me, trying to get my kids to sleep and feeling like a failure because surely I must just be bad at this. And certainly not my kids, who I now know, but didn’t then, are autistic.

Many autistic kids have sleep problems. Studies consistently find that 40–80% of autistic children experience significant sleep difficulties, compared with roughly 20–30% of neurotypical children.

There are so many possible reasons for this. One might be hormonal. Several studies have shown that autistic kids produce melatonin (the hormone that tells your brain it’s time to sleep) in lower concentrations, or later in the night.

There could also be sensory reasons, like wrinkly sheets and outside noises, that could make a bedroom feel overwhelming to an autistic child. Autistic kids also typically struggle with transitions, like going from day to night. Some report that it’s harder to switch “off” their brains. And many are anxious.

I often think back on my own childhood through an autistic lens now that I’m diagnosed, too. And I know that I struggled with so many of the same things. Itchy pjs. Scary noises. Anxiety. I was never able to switch my brain off. I would lie awake long after my mom had gone to bed imagining fake, scary scenarios, like getting kidnapped, or dying in a car accident. Once I was old enough, I would stay up late reading until I couldn’t keep my eyes open anymore, then sleep fitfully until the sun came up. Only when it was light again could I ever relax.

In many ways, I’m still like this. I’m just so exhausted from parenting my kids that it doesn’t matter anymore. When I get the chance to sleep, I take it. You know, curled up with T-rex arms tucked under my neck, buried in blankets so I’m not aware of the dark “space” around me, a fan pointed at me on full blast so I don’t suffocate and to block out all noise. Typical stuff. Nothing to see here.

I gave up

Sleep is funny. You can be the most gentle, patient, lovely parent, and still turn into a gremlin foaming at the mouth if your kids don’t sleep. Because if your kids don’t sleep, neither do you.

There are so many aspects of my family’s life that I have let go or reframed since my kids were diagnosed. I don’t make them eat meals at the table. They have way too much screen time. They wear whatever feels comfortable. Their diets would make a nutritionist weep. None of this really affects me. I’m easy. I’m breezy. But I’m not proud of the person I become at 2 a.m. when my kid starts knocking on the walls to get my attention.

At a certain point, it becomes about survival. We started giving my eldest melatonin supplements at night not long after he was diagnosed, at the strong urging of our pediatrician who assured me it was safe. This seemed to signal to his brain that he should at least stop moving, which was half the battle. I’ve tried to get my youngest to take it, too, but he’s so picky he won’t even entertain the thought of opening his mouth for a pill. I’ve tried to dissolve it in water and he immediately recognized the contaminant and spit it across the room. OK then.

My eldest still takes melatonin every night five years later. Every once in a while I think it’s probably just a placebo and he doesn’t really need it after all. But then if I don’t give it to him he does somersaults in bed while yodelling until 11 p.m. which is a good reality check. But the melatonin is only part of our bedtime situation. It alone isn’t enough.

So, how do I get my kids to sleep? I gave up.

I will never have the kind of kids who will just get in their beds and stay there. Trust me, because I have tried everything and then some. And then some more. Every product. Every routine. Every weighted this and white noise that. In fact, if anyone in the comments tries to give me sleep advice I might just light myself on fire. No pressure.

I had to let go of what I thought sleep would look like, and when I did, guess what? We all slept better. Realtively speaking.

Bedtimes take anywhere from one-to-two hours or more. Both kids need someone to lie with them in their beds until they are deeply unconscious. My husband and I swap kids every other night to keep things fair (they both want me, not to brag or anything). I throw myself across their hot little bodies like a human weighted blanket. I let them talk. My youngest will ramble about math. My eldest will ask questions about nuclear bombs. Light, peaceful bedtime stuff.

My youngest is afraid to close his eyes. I have to remind myself not to say “time to close your eyes!” each night or he will correct me. If I say “time to go to sleep!” he will say, “do you mean it’s time to stop talking?” He’s my v. literal autistic. Anyway, I have to let him talk and talk and talk until he eventually just passes out mid math equation. Then I slither out of his bed and room like a ninja with melted bones.

If that doesn’t sound so bad, keep in mind it’s all for naught: he kicks our bedroom door open every single night somewhere between midnight and 3 a.m. and climbs in with us to sleep the rest of the night there. He also brings his security blanket, which is named Blanky and smells strongly of bloated corpse because we cannot wash it. So I usually sleep with blanky strewn over my face and his feet in my lower back. But it’s still easier than trying to put him back to bed over and over while he scream-cries. Remember: survival.

My eldest sleeps under a fitted sheet inside a tent on his bed. And yes, I lie in there with him. My neck is broken but it’s really quite cozy in there. He likes songs while he falls asleep. Sometimes I sing but usually I play zen spa music on my phone because I’m lying under a sheet with him and there’s not a lot of air. Sometimes he wants to lie in there alone but needs to hold my hand. I know he’s asleep when his hand starts twitching. Then I tiptoe out.

His anxiety is brutal. If he wakes up in the night, that’s it: he’s up for the rest of it. It doesn’t matter if it’s 4 a.m. or midnight. I’ve stopped fighting it. There’s no point. One of us gives him a phone to watch videos and might sleep on his floor. The other has to stay in bed because if my youngest comes looking and no one is there he will wander the house like a Victorian ghost. There’s a small chance my eldest might doze after a few hours of phone time, but it’s more likely he won’t and we’ll keep him home from school the next day. Again: survival.

It’s about trying to maximize sleep for everyone. At least one person in our house is probably awake in the night every single night. As long as it’s not both parents, we can survive the next day. My husband and I will swap naps after bad nights. If he spent the night on the floor, I will send him to bed once my alarm goes off for work and let him sleep as long as I can without everyone being late. I start work early, at 8, but I will often nap after work. On weekends, he might let me sleep in, then nap when I wake up. We still parent and sleep in shifts. Just like we did when they were newborns.

Are we surviving? Sure. Are we thriving? Well.

Honestly, it could be worse. My kids fall asleep feeling secure and loved. Their needs are met. Often this is when we connect and have deep conversations. I look back on all those years I wasted fighting my eldest to stay in bed and wish so badly I could take it all back. But I didn’t know.

When people ask the point of a “label” like autism, this is one of the situations I think about. Because it’s not a label. It’s understanding what my children need and being able to give it to them, whether it’s a fitted sheet in a tent or counting the zeros in quadrillion until they pass out.

It’s giving up — for the better.

My eldest still sleeps with penguins. In fact, I’m writing this from the floor outside his tent, blasting zen spa music, surrounded by penguin stuffies. He has dozens of them.

Some of them have even been to Candyland. But that was before. Now they’re just penguins.

This Substack started as a little personal project a couple of months ago. I needed an outlet to write about myself since my job is to write about other people. Then I published 5 things I thought were normal until my kids were diagnosed and went from 30 to 200 subscribers in a weekend. And you’re still rolling in!

WELCOME TO THE SPECTRUM, FRIENDS! We have cozy blankets, books, not a lot of toenails between us, and very few fucks to give.

Turns out there’s a whole lot of you frolicking on the spectrum, or grappling with it, depending on where you’re at right now. And I am happy to be the potato guiding your journey.

Many of you have questions. Many of these are the same questions people often ask me about my diagnosis in real life.

Let’s go through some of the most common ones.

Am I autistic if I share your traits?

I get this a lot. Especially since I started writing about autism here on Substack. People might read one of my posts, and comment: “I also do all these things. Am I autistic?” Or, “I do all these things, too. But I’m not autistic. So what gives?”

Girl, I hear you. But here’s the thing: I don’t know. Sorry, lol. But I don’t! I’m not a medical professional. I can really only write about my own autistic experience.

That said, here’s what I learned when my oldest son was first diagnosed and I struggled with accepting it because he didn’t “seem” autistic to me. (This is an excerpt from an essay I wrote for Today’s Parent).

Diagnosing someone as autistic is like looking at a map of the stars and seeing them come together as a constellation, my son’s psychologist told me. I’d asked her what made her so sure he met the criteria, after only meeting him once? At this point, my son was four years old (nearly five), and we had been working with a counsellor for his bedtime meltdowns for about a year. The counsellor, after observing some rigid behaviours and mannerisms, encouraged us to pursue a psychological evaluation.

There was no one specific sign, the psychologist told me during the assessment, but rather a lifetime of behaviours, patterns and traits that can only mean one thing. These traits and behaviours are him, his personality, his essence, what I love about him—and, sometimes, what pushes me to my breaking point. These traits are also autism.

I guess what I’m trying to say is there’s no one trait, or behaviour, or mannerism. Like me, you might be sensitive to clothing, pick your toenails, collect mugs, feel socially exhausted, have anxiety, and have specific food preferences. That doesn’t mean you’re autistic, or aren’t. It’s part of a much bigger picture no article or list can determine.

To know for sure, you likely need a formal assessment from a medical professional. They might not even ask about your toenails.

How does the assessment actually work?

See how I segued that so seamlessly? Would have been smoother if I hadn’t pointed it out. But as an autistic, I love to over-explain.

Here’s how the assessment process worked for me. Let’s pick up from my fist visit to a doctor about my suspicions, and not the years of personal torment it took me to get there.

I told my family doctor I was interested in pursuing an autism diagnosis after going through it for both my kids. She was like, “OK, but I doubt it.” (No hate, I love her). She sent me a couple of screening questionnaires. I don’t remember what they were called. But I filled them in, and scored kind of borderline. She asked if I still wanted to pursue the assessment, and I said yup. She presented some options, one of which involved waiting years for a funded assessment, and the other involved waiting months for a private one. I chose private, my doctor suggested some local psychologists I could try, and wrote a referral.

I reached out to a neuropsychologist who specializes in adults with ADHD/Autism. We had a long interview about why I suspected I might be autistic, went through my medical and family history, and she put me on her waitlist for a formal assessment based on my responses.

I had to wait about five or six months for that appointment, and booked a full day off work for it. I was warned it might take several appointments, depending on how I handled the testing. Being a perfectionist, I was determined to finish it in a day, and I did. I packed a little lunch and everything.

The assessment took place in the psychologist’s office. A psychometrist (a technician who administers psychological tests) gave me a full IQ test, as well as academic testing. It was GRUELLING. Timed puzzles, memory tests, vocabulary questions, math — the works. It took nearly the entire eight hours I was there. By the end, I was sweating like a pig.

There were also dozens of questionnaires to fill in that screened me for everything from depression and anxiety to personality disorders and psychoses. Plus screenings specifically for autism and ADHD.

At the end, the psychometrist conducted a long interview, asking me questions about my childhood, family, experience in school, social interactions… basically my entire life, including how I butter my toast at breakfast.

I was depleted by the end. Fried. Corpse. Potato. I napped for the rest of the night.

It took about eight weeks for the neuropsychologist to review all the results and write up a report. She scheduled another appointment and cut right to the chase: autistic AF. Bonus: depressed and anxious. I’m a triple threat, mom!

She spent a full hour explaining the results while I digested my new identity.

All told, it cost a few thousand dollars. But I’m lucky because I have good medical insurance and was able to claim most of it. Otherwise, I might not have been able to go private. I know this is a barrier for a lot of people. It’s also why I think self-diagnosis is valid if that’s what you can manage.

Jesus, I’m a potato just from re-living this. Assessments are no joke. Can I nap now?

Are you… sure you’re autistic?

Ah, my favourite. This question is usually asked with an air of suspicion. Or maybe I’m just interpreting it that way. Hard to say, what with the ‘tism and all. But I’ve noticed, especially when I was first diagnosed, that some people seemed… skeptical.

Fair enough, I guess.

I mean, I’m 43*, married**, two kids***. I have a house****, a car*****, and a successful career****** where I literally communicate for a living*******. I have friends******** and a social life*********. Hobbies**********. I can be very outgoing**********.

On the surface, I appear like a fully functioning*********** neurotypical************.

*mentally, I feel 12. Physically, I feel already dead.

**to someone late-diagnosed with ADHD trying to find his keys as I type.

***autistic kids. Extra spicy.

****don’t ask me where the water heater is.

*****that I’m too afraid to drive.

******and I only had to burn out of a few others first!

*******scripted conversations where I control the narrative to get information I need then say “ok, bye forever!”

********many of whom also wound up being late-diagnosed neurodivergent. BIRDS OF A FEATHER. Extra on the spectra? Someone stop me.

**********that I largely now avoid in favour of rest. Couch for life.

***********puzzles, obsessing about how many books I can read in a year, colour-coding my bookshelf, collecting mugs. You know, hot girl shit.

************when I’m drunk. Which, in my 40s, is never.

************

*************

All jokes aside, here’s the thing: NO! I’m not sure, BRENDA! (Why is it always a Brenda?) As I mentioned in my last post, not only do I constantly feel like an imposter/fake grownup/adulthood fraud, I even question the diagnosable reason I feel this way.

I spent the first several months after my diagnosis convinced I’d somehow tricked the neuropsychologist. It’s an insecurity that still plagues me even though I know that the assessments are designed to prevent self-reporting bias. It’s something I question even though reports show that the majority of adults who seek a diagnosis will have a positive result SPECIFICALLY BECAUSE NEUROTYPICAL ADULTS GENERALLY DON’T OBSESS ABOUT POSSIBLY BEING AUTISTIC.

In other words, if you are taking up precious brain cells and your limited time in this one life you get to live looking up whether you’re on the spectrum, it’s likely that you might be frolicking on there somewhere. I wonder what the normals do with their days? Pay their bills on time, probably. Service their hot water heater, which they can definitely find.

So, no, I’m not sure. I’ll probably never be sure. But that’s on me.

Because, objectively, I am autistic. And always have been.

One of my earliest memories is feeling absolutely convinced I’d accidentally gamed the IQ test that placed me in the “gifted” stream at school in Grade 1. Because how else was it possible that I’d been deemed smart enough to join the all-male science and math prodigies for twice-weekly classes where we attempted logic puzzles that made my brain fold in on itself? If I were truly gifted, wouldn’t I be able to build intricate model airplanes and solve advanced math problems along with the rest of my fellow geeks?

It never occurred to me that enrichment programs in the ‘80s and early ‘90s followed very narrow, distinctly “male” pursuits to fit the “gifted math-whiz” stereotype. Just like it likely wouldn’t have occurred to my enrichment teachers that reading, writing art, and social sciences — my strengths — should be part of the curriculum.

So even though I could read every book in the school library and write stories and poems at age six, I thought I was terribly stupid. I remember crying into my logic sheets, unable to solve Sally’s number of siblings, as the other gifteds whizzed through them with ease.

Intent on proving myself, I worked harder. I stayed up late finishing projects. I asked for extra credit assignments. I became a perfectionist with unrelenting personal standards. I helped teachers clean up and pass out milk at lunch. I became a “good student.”

As I got older, I joined every club, signed up for every volunteer activity, and enrolled in every possible class that might help edge up my GPA. By my last few years of high school I was sleeping maybe fours hours per night, juggling competitive swimming, musical theatre, early morning concert band practices, late-night choir rehearsals, a part-time job, and student council.

I stopped eating. I was living off Starburst candies and frozen peas. I cried all the time, hidden in my room, slapping my own head and calling myself stupid when I didn’t ace a test. I spent my entire weekends sleeping. I remember feeling like I might actually die if I got out of bed. But then Monday morning would come and I’d do it all again with a smile plastered on my face.

I was accepted to the university of my choice with a full merit scholarship. I was featured in the local newspaper for my achievements. And I still felt like I’d tricked everyone. I was still that six-year-old girl, tears dripping onto my mangled model airplane, convinced I was an imposter.

In so many ways, I still am.

Even my autism diagnosis at age 41 felt fake. Had I somehow tricked the neuropsychologist? Had I accidentally answered her questions and questionnaires in a way that confirmed my own bias? Had I gamed another IQ test? Did I just “want” to be autistic?

Looking back now, through the lens of my diagnosis, I can see how often what I thought was a personal failure was actually autistic burnout. Experts now explain that autistic burnout is a syndrome “resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports.”

In other words, for me, it was from not realizing why it felt like I was acting in a play without a script. Because WHY does everyone else seem to understand that you’re supposed to apply for jobs or further education after you graduate from university, set aside retirement savings when you’re older, or get your hot water tank serviced if you own a house?

My diagnosis hasn’t “cured” this feeling of perpetual failure, or my propensity to burn out, but it has helped me understand it.

Here are a couple of examples where I thought I was failing as an adult, and what I’ve learned.

Tired that never goes away

Left to my own devices, I could probably spend an entire week rotting in bed. Of course, I have two autistic children who like to ponder the meaning of life at 3 a.m. and a rescue cat who likes to perform midnight dance routines on my bladder, so I’m lucky if I get a few uninterrupted hours of sleep.

But I have always felt just utterly and completely drained. Just like I’ve always felt lazy and unproductive when I crawl into bed during daylight hours and sleep like a corpse for hours at a time.

Turns out, I’m not alone. For many autistics, it can feel like every ordinary task requires significantly more mental, emotional, and physical energy than it seems to require for other people. This can be due to a number of factors, like constant sensory processing, the toll of masking, the extra cognitive work required for social interactions, and executive functioning demands.

Many late-diagnosed autistic adults report they spent years thinking they were “lazy” for needing seemingly more rest than the people round them. But autistic burnout isn’t just being tired — it’s a profound and pervasive sense of exhaustion that results from months or years of trying to cope with demands that exceed your available resources.

Researchers have also found that adults experiencing autistic burnout report a loss of skills (like communication skills), and reduced tolerance for sensory stimuli. For me, this can look like stony silence and refusing to answer questions, while simultaneously preparing to eviscerate whoever left the ceiling fan running.

Can you nap it away? No. Well, I can’t.

But since my diagnosis, I’ve learned to give myself more grace. I’ve written before about how I often feel like a potato, but since my diagnosis, I’ve embraced being a proactive potato. I lie down after social events or outings. I read quietly every night to reset my nervous system. I go for slow, meandering walks in complete silence. And I nap on weekends, when I can, (mostly) without guilt.

I know how easily my battery drains if I don’t keep it charged. Proactive potato: embrace it.

Decision fatigue and task avoidance

As we speak, I’m guiltily avoiding texts that require me to commit to plans from at least three different friends. I like these friends very much. I’d also love to see them. But if I have to pull out a calendar and think about my schedule, I think I would prefer to die.

I’ve always felt easily overwhelmed, and sometimes paralyzed, by plans, decisions and tasks. These can be everyday decisions like where to make dinner reservations, or monumental life choices like post-secondary plans or whether to have another kid.

I do very well with directions. Just tell me what to do, where to be, and what’s expected of me, and I’m on it. Left to my own devices, I might avoid the decision until it’s too late, which is how I found myself lying in bed for weeks during my final semester of university when I realized everyone I knew had a job lined up or was going to grad school.

Or, I might make a snap, impulsive choice — perhaps after a few too many drinks — based on nothing except my desire to avoid further decision-making. Which is the beautiful story of how my youngest son joined our family.

Decision fatigue can be a daily reality for autistic people because of the sheer amount of mental processing each decision requires. What might be routine for neurotypicals, like deciding what to wear, can be exhausting for autistics like myself. For instance, here’s some of what goes through my head as I get dressed each day: Will this bra hurt my back? Do these underwear come up high enough to suck in my gut? Will these pants dig in when I sit down? Is this sweater scratchy? Can I roll up the sleeves if I get too hot? Will I be too cold without a sweater? Will I be OK without pockets? Oh, everything feels wrong, let’s strip down and start over. Can you see this bra through my shirt? Does it feel too tight?

I’m mentally fried before I’ve even really started my day. By the end of the day, if my husband asks me what we need for swimming lessons, I might just walk into my room and shut the door. But if he asks me to grab the towels, I’ll happily do it.

Ask me where I want to go for dinner and I might avoid your text. Tell me we have reservations at 7 at The Keg and I’ll probably be there.

I see how this plays out with my oldest kid when he’s crashing out by the end of the day. He’ll burst into angry tears and scream “I don’t know!” if I ask if he’s hungry and what he wants to eat, but silently hoover a banana, two slices of Nutella on toast, a bowl of yogurt and a glass of milk if I set it all beside him, point, and say “food.”

I’ve started using this knowledge of how my brain works to avoid decision fatigue and overwhelm in my daily life. I often ask my bosses to tell me exactly what they want when they assign me a story I’m unclear on so I don’t waste time floundering when they say “weather wrap” but actually mean “800 words combining the various extreme weather warnings from coast-to-coast with comment from a meteorologist and perhaps a graphic.”

I set up all my bills for automatic payments so I don’t have to remember when they’re due. I tell myself to just text one friend back today, and another tomorrow.

I tell my husband to just make dinner instead of asking me what I think he should cook. I make myself lists when I’m overwhelmed about bigger decisions, like my eldest’s birthday next month. (Please, for the love of all things holy, don’t ask me what I have planned for his party, as I might snap at you then crawl into bed).

Better yet, I outsource whenever possible: hilariously, my sister is an event planner. And thank god for that or I may not have had a wedding, a baby shower, a mortgage, or enrolled my children in school.

She inherited all the executive functioning my family had on offer. I inherited mad writing skills and potato.

I have so many more examples of times I felt like an adult fail. More than I have the potatoes to get into today. All I can say is: here I am. I’m 43. I have a husband, two kids, a house, a car, and a job. I should probably feel like like a grownup, and not a kid playing dress-up. But alas.

Anyway, that’s enough words for one day. It’s time for my nap.

I was 41 when a neuropsychologist diagnosed me. My older son was diagnosed when he was five. My younger boy, at age four.

With them, I see every day how their differently-wired brains effect their social skills. They’re blunt to a fault. One struggles to maintain friendships and is so inflexible that it’s his way or the highway. The other is so anxious he barely wants to leave the house. I’m constantly helping them navigate a world where “the rules” seem so obvious to every else.

When someone says hi, it’s nice to say hi back!

It looks like that boy wants to play. Can he join your game?

Just because a grownup is nice doesn’t mean you tell them your date of birth, home address, and how much money is in your bank account…

You handed out how much cash at recess??!!

Social difficulties are a key part of any autism diagnosis. Realizing my older, extremely social and bubbly child was autistic opened my eyes to all the subtle ways these impairments can show up. Watching my painfully shy and clingy younger boy get the same diagnosis was a good reminder that every autistic person is different, and so are the ways their impairments manifest.

And me? Well.

If you’d asked me two years ago if I had social difficulties, I’d say no, other than the fact that I feel burned out after most social interactions. And if you asked whether these difficulties affected my relationships, work or daily life, I would have laughed.

Because, what do you mean? I’m married, never mind that if he talks to me before I’ve had a cup of coffee and 40 minutes of reflective morning silence I get violent. And I have friends, even if it took me 20 years to realize I wasn’t one of the cool kids and I have to sometimes literally bite my own tongue so that I don’t tell the other moms at school pickup the results of my last pap test.

I have no issues with my colleagues and managers, even if a co-worker once asked me to please stop sharing so much personal information on the 6 a.m. shift. In fact, just recently, I asked one of my bosses if it would be weird to text his personal phone, and he said, “yes,” so I did not. See? Clear boundaries were established and OH MY GOD FINE.

Like I said: humbling.

I’ve done a lot of reflecting in the two years since my diagnosis, including re-living some of my most cringe memories. And it turns out that I’m not much better at managing social situations than my 9-year-old kid handing out fivers on the schoolyard.

And with that, here are three ways I didn’t realize I miiiight have social impairments until I sat with my autism diagnosis for a while.

1. I suck at social cues

I have this core memory that absolutely haunts me.

I’m 12, arguably the most tragic age to be a girl. I have frizzy hair and greasy skin. I think Blossom hats, floral jackets and denim short-eralls are the height of fashion. I’m desperate to be popular and see no reason why the coolest kids at school shouldn’t accept me into their fold. Worst of all, I’m painfully earnest.

It’s the first day of Grade 8. The cool kids are lounging on some rocks in the school yard. And I have something to tell them so I march right over.

“So, my mom and step-dad got married this summer,” I try announcing to the group. A few people nod and then carry on with their own conversations. I try again.

“My mom and my step-dad got married this summer. I was in the wedding. It was at Boldt Castle.”

Their conversations continue. Surely they’re not comprehending me. Come on, kids, I was in a wedding! At a castle!

I step even closer. “My mom walked down the aisle to ‘I Would Do Anything for Love’, you know, the Meatloaf song? But a pianist played it. He wasn’t very good, though. And my step-cousin crapped in his pants right before the ceremony.”

No one even looks up at my scandalous use of ‘crap’. It doesn’t stop me.

“Our room at the hotel was on the fifth floor. My sister and I had a spitting contest off the balcony. I accidentally hit a lady and she thought a bird crapped on her head.”

Two craps, now. Still, no one says anything. They must not understand.

“She was so mad, my sister and I were afraid to leave the room. I thought for sure we were in huge trouble. But she never knew it was spit!”

I keep going, enthusiastically regaling an entirely disinterested audience with the stories I’ve been practicing in the shower for the last month. The chocolate mousse they served with dessert (my favourite). The disposable cameras on each table for the guests to use (I took an entire roll of my other step-cousin, a baby I was obsessed with). The locket I wore, a gift intended to soothe my mixed feelings about the wedding.

“So, yeah, my mom got married. It was pretty cool.”

It’s not until another classmate finally says, “Jesus, we heard you,” that I realize the actual issue is that no one cares. I burn with embarrassment and walk away.

Today, I’m grateful she at least put me out of my misery. Like shooting a deer trying to drag itself out of the road after you hit it with your car. Who knows how long I might have kept talking otherwise. I could still be going.

That was thirty years ago. And if you think surely by now I’ve learned to read a room, I am sorry to tell you I still haven’t. To this day, I find myself repeating the same stories over and over if they don’t elicit the reaction I expected, because clearly the problem is my audience just doesn’t get it. I repeat punch lines. I explain my own jokes, my god.

My sarcasm rarely lands in real life, so I will often add “that was a joke!” or “I’m kidding!” as an afterthought. Just in case.

Sometimes, when I really want to torture myself, I think about how I wound up in a career where the entire purpose is to convince people that what I have to say matters. I’m a journalist. A storyteller. And I still catch myself repeating my ideas in my daily pitch meeting until someone either agrees I should pursue the story or takes pity and shoots the deer (that was a joke!)

At least at work we have clear metrics that tell me how my stories land. I know exactly how many people read them, and for how long. I know when they decide “enough” and turn to something else. I learn from my successes and failures and readjust my approach.

If only I could measure my social interactions the same way. It would save me a lot of embarrassment.

2. I struggle with social rules and fairness

Again, it took an autism diagnosis and a lot of inner work to realize the ways this one shows up for me. After all, it’s not like I’m flipping board games if I don’t win (…anymore) and ignoring common etiquette or social norms, right?

But sometimes I do look back on the years I worked in an actual office and want to crawl into a hole and die over how I acted, so I guess there’s that.

In journalism this hasn’t been as much of an issue. Probably because we’re all a little weird. (In fact, several of my current colleagues are on the spectrum, too, so maybe we flock to the same career). Or maybe it’s because I’ve lucked into a workplace that embraces my quirks, because they know that even if I show up in a hoodie and rant about how badly my kids slept, I’m going to do my job, and do it well.

But that hasn’t always been the case. And I’m not going to say my previous jobs haunt me to this day, but… oh god, let’s just get into it. Maybe it’s best just to list the lessons I’ve learned the hard way:

• No one “deserves” an office more than anyone else. Just because your job is to write, and you need quiet, doesn’t mean you get a claim on a door that shuts. There’s a hierarchy, and it has nothing to do with how hard you work.

• If you do eventually harangue your bosses into letting you have an office (congratulations, you’re relentless!), putting up a sign that says “fuck off, I’m writing” might be considered anti-social and rude. So is the cross-stich on your desk that says “fuck right off.”

• Let’s just say the only reason you got an office is because the person with that office went on maternity leave. When they come back, it is no longer your office. Even if her job doesn’t involve writing. Even if she has to leave work earlier than you to pick up her kid from daycare. Please do not fight the new mom over this. She’s already pumping in the break room. Do not repeatedly bring up your perceived injustices with management. Jesus Christ, have a HEART*

• Some people will take longer lunches than you. Or leave before the clock strikes 5. They will take more sick days, and vacation days, and claim more overtime. Some people will make more money than you even though you do similar jobs, will be promoted whether you think they deserve it or not, and will seem to work less overall than you do. Some people will get lucky, or know the right people, or know how to network. This is not a massive injustice. This does not need to be brought to the attention of your higher-ups. Try not to let this cause you personal trauma.

• Just because you CAN come to work in sweatpants doesn’t mean you should. Don’t take your shoes off and sit cross-legged if you can avoid it.

• Sometimes, colleagues will invite you out for lunch. You will wonder how they can possibly have time when there is WORK TO DO. Don’t refuse to go. Don’t mentally question their work ethic. Don’t torture yourself over being unliked when the invitations eventually stop. Don’t deprive yourself of food and connections just because there’s work to finish. In fact, stop obsessing over the work. It will still be there in an hour. No one is timing you.

• Work isn’t fair because no one is keeping score. You’re not getting bonus points for skipping vacations, refusing to take breaks and staying late. You’re just burning yourself out. You’re not helping your career by working “harder” than everyone around you, but you are hurting it when you can’t get out of bed for a week because you worked on a project until 2 a.m. and your bosses failed to throw you that parade you envisioned.

*I would like the record to state that as soon as I had a baby of my own I tracked down this former colleague and apologized PROFUSELY and REPEATEDLY for being such an IDIOT. Honestly, it haunts me to this day.

3. I can’t always tell the difference between friendships and acquaintances

I’ve had to have some tough talks with my nine-year-old about friendships recently. Grade 4 is brutal, honestly. Kids often don’t say what they mean or straight-up lie. Social hierarchies have begun. Someone might be nice in one setting, and indifferent in another.

Behaviours that friends might have thought were funny or silly just a few years ago — like farting in class, or playing with your food at lunch — are now annoying and kind of gross.

It’s not easy to explain all this to an earnest autistic kid who doesn’t understand nuance and just wants to play with friends.

Turns out I’m not much better. Watching my boy struggle this year, and explaining that “friendly doesn’t always mean friends,” has sent me on my own journey. How many of my text conversations are almost completely one-sided, for instance? Should the mom down the street really know my entire dating history when I’m not even sure of her first name? (Thanks for listening, Xavier’s mom!)

I’ve been trying to remind myself that just because another mom and I both take our kids to swimming doesn’t mean we’re blood sisters. I remind myself to let friendships breathe. If someone wants to talk to me, they will. And a friendly “hello!” at the splash pad doesn’t mean I should tell them all my childhood traumas.

It breaks my heart when my kid tries to hand out money at recess, or sneaks candy to school in his pockets to dole it out to “friends.” I’m constantly reminding him that we don’t have to give gifts for people to like us, even as I force my beloved books into the hands of my own friends and force all our old baby gear onto unsuspecting neighbourhood parents.

Up top, I mentioned the colleague who asked me to stop sharing my personal stories with her. I can laugh about it now, but at the time, I felt wounded because I considered her a close friend. You know, this person I had never met in real life because I work remotely. This person I only ever communicated with over workplace G-chat. This person who just happened to work the same shift as me, and was friendly, therefore I unloaded a lifetime of my own personal drama and bullshit on her at 6 a.m. while editing stories about the war in Ukraine.

Now, I get it. And once she set the clear boundary, I respected it.

Did I bring this painful experience up during my autism assessment? I did. Did the psychologist place a big, fat checkmark next to “struggles with social boundaries?” as a result?

I’m not sure. I was too busy trying to trauma-bond with her and offering up books I thought she might like.

Anyway, I’m still working on boundaries. I’m still working on all of it, really. Cues, my issues with perceived fairness, and remembering that friendly doesn’t always mean friends. It helps, I think, that in my 40s I’ve generally stopped giving a fuck what other people think of me or whether or not I’m cool.

Also, I don’t want you to think all this means I don’t have good friends. I have plenty, ranging from mere acquaintance to BFFs, and I cherish all of them. I just occasionally remind myself they may not all feel the same way about me, and that’s OK.

I know which are the real ones. They’re borrowing my books.

A few years ago, if someone had suggested it I would have laughed. Then, I would have been extremely offended. Next, obsessed over what this person saw in me that made them think I was an antisocial weirdo.

Turns out I had a lot to learn about autism and my own internalized ableism. My kids and their own autistic diagnoses at ages five and four gave a crash course. Next came my own diagnosis at age 41.

I wish I could say it gave me immediate enlightenment. That the pieces of my entire life suddenly clicked together the moment my doctor said, “Natalie, I’m diagnosing you with Autism Spectrum Disorder.”

But there was no a-ha! moment. I didn’t suddenly shed a mask I hadn’t realized I’d been wearing and skip off into the sunset with a new identity and some special skills. I, autistic! Gather round and watch me perform math!

In fact, I ignored my new label for several months even as I advocated for my own children. I felt sheepish for pursuing an assessment in the first place. I worried people would think I just wanted attention. To this day, I struggle with disclosing my own diagnosis.

I’ve had two years to process. To reflect. To look at the last 43 years of my life through an entirely different lens.

There are so many reasons autistic women are drastically underdiagnosed. I won’t get into all of them, or how I made it through 41 years of life without realizing my brain was spicy. But one particular reasons stands out for me: anxiety.

Multiple studies have shown that autistic women have elevated rates of psychiatric comorbidities such as anxiety, depression, and eating disorders — “conditions that may obscure core autism traits and lead to misdiagnosis or delayed recognition,” notes one study in particular.

“Consequently, many autistic women remain unidentified until adolescence or adulthood, often after years of ineffective treatments targeting co-occurring symptoms rather than the underlying condition.”

I’ve been anxious and depressed most of my life. I saw child psychologists about it, then adult psychologists. I started taking anti-anxiety meds in my 30s and still pray to the altar of Zoloft.

Now, I’m not saying I was autistic this entire time INSTEAD of anxious and depressed. In fact, I’m a triple threat: the neuropsychologist who told me I was autistic said I also meet the criteria for generalized anxiety disorder and major depression. Not to gloat.

But part of my reflection has been realizing how many of my anxious symptoms might have actually stemmed from something more. Something… spicier.

And with that (and with the caveat that I am NOT A MEDICAL PROFESSIONAL and this is just my own experience), here are 3 symptoms I thought were anxiety but are actually autism.

1. Fear of driving

Yup, I’m a 43-year-old woman and I can’t drive. Well, technically, I can. I’m somehow fully licensed through a driving test miracle. But the thought of getting behind the wheel of a car sends me into a full panic. Even writing this section makes me feel woozy. I’ve probably driven a dozen times in my entire life, and nearly all of those times were driving lessons in which I either cried like a baby or held back vomit.

I’ve always thought this trait of mine was the shittiest, most shameful part of my anxiety. I’ve tried everything, and I mean everything, to get over it. But something just doesn’t click for me. This skill that seems so natural for everyone else just does not compute. I don’t understand how someone can just change lanes or merge and remember all the rules while simultaneously steering a death machine on wheels.

Then I got the results of the IQ test that was part of my autism assessment, and one of the keys to my diagnosis.

Many autistic people have what’s called a spiky profile — an uneven distribution of cognitive and life skills. While a neurotypical person's skills might be more even, an autistic person's abilities might have peaks and dips. I see this in my youngest, who is a walking calculator but struggles to get his shoes on the right feet. And thanks to my own life-questioning IQ test, I see it in me, too.

Some of my skills were in the gifted range. Language, comprehension, reasoning — the skills that allow me to thrive as a journalist, and read a book in two days. But others were, um, woof. Like, so low I’m surprised the psychologist let me leave her office unsupervised.

I kid, but for real, my processing speed was shockingly low. Just astounding, really, that I get through life at all. My spatial skills weren’t much better. And if you think about it, aren’t these some of the core skills you need to be able to drive a vehicle (without killing someone)?

No wonder it felt like driving was a natural skill for everyone but me. I truly lack the ability to quickly notice and react to changing situations. You know, like traffic lights, pedestrians, and cars merging. Meanwhile, my internal mental maps suck and I get lost finding the bathrooms in restaurants.

Am I afraid of driving, or is driving afraid of me?

My autism diagnosis helped me give myself some grace in what’s been a deep and lifelong shame. You guys go ahead and drive to the store with ease. I’ll be over here organizing my books by colour.

2. Hypochondria

I have always been absolutely precious about illnesses and injuries. I live in constant fear that I have an undiagnosed mystery cancer and have gone to great lengths to ensure I don’t. I’ve been scanned, probed, prodded.

I badgered my husband about a benign mole on his back for so long that he eventually got his doctor to shave it off just to shut me up.

When someone I know, even tangentially, gets a cancer diagnosis, I spiral. Sometimes I lie awake in bed at night, clutching my chest, while imagining my children growing up without a mother. I obsess about the statistics, about how unfair life can be, about how nothing is really in our control.

I’ve written before about how I think I might feel pain more intensely than some people. I’m pretty sure I’ve had several entirely unnecessary medical procedures and tests as a result. Looking back, I’m pretty sure that crippling appendix pain when I was 13 was actually just ovulation.

I wore a heart monitor for weeks when my eldest was two because I was certain I was having heart attacks. To be fair, this is where anxiety and autism intersect. The chest pains were anxiety (which stemmed from some legit health issues I’d had earlier that year). And it was this episode that finally pushed me to start taking Zoloft. And just like that, the heart attacks stopped. Weird!

Turns out, some autistic people may be more vulnerable to health anxiety. Traits like a heightened focus on details means we may notice subtle bodily sensations that others would ignore, such as slight changes in heartbeat, breathing, digestion, or muscle tension. Pattern-seeking may make us more likely to seek out connections between symptoms and certain illnesses. Difficulty with uncertainty and vagueness may compel us look for answers for even the mildest changes in our bodies.

So, there’s that. But don’t automatically let that discount your symptoms… studies have also shown that autistic people report high levels of feeling misunderstood by doctors, anxiety about whether a symptom warrants a doctor visit, and difficulty communicating what’s wrong. And this can lead to legit medical issues being missed.

Cool, how’s your anxiety now?

3. Panic attacks

My panic attacks have always felt different. Yes, I am feel intensely overwhelmed and scared. Yes, I sometimes think I’m dying. But mostly, I want — nay, need — to crawl into bed and sleep. I don’t need to calm down. I need to not exist for one-to-two business days.

I need blankets. Silence. Books. Food and water. More blankets. No talking. No demands. I need to burrow. I am potato.

If you ask me something when I’m in this state, I may bark at you. A spinning ceiling fan makes me want to vom. My clothes are suddenly intolerable. The buzz of a bathroom fan is deafening. In fact, can all fans pls fuck off?

Sometimes, I shut down entirely in high-stress situations. I go non-verbal in disagreements with my husband and just stare at the wall until he gives up and lets me be. Sometimes, I won’t talk for hours (but trust me, I am winning the argument in my head).

I’ve been like this as long as I can remember. Strong lights have always made me feel dizzy and sweaty. And even as a teen I needed to nap. I’d disappear into my room and shut out the world until I felt like I could exist in it again.

Now, with my autism diagnosis, I’ve come to understand these episodes are actually sensory overload and autistic shutdowns/meltdowns. They can look and feel a lot like panic attacks, but they’re fundamentally different.

While a panic attack is usually driven by intense fear, panic, or perceived danger, meltdowns are often triggered by sensory overload, social overload, frustration, change, or accumulated stress. And while a panic attack might be sudden or unexpected, a shutdown is often more predictable because it follows a period of prolonged overload.

Understanding this is probably the biggest gift my autism diagnosis has given me. Because now I know I need to rest, recover, and take care of myself to help avoid shutdowns. I’m still a potato, but I’m a potato by choice. I’m a proactive potato.

Do I still wish my diagnosis opened the door to a new secret skill? Sure. Who wouldn’t love to be a math genius, or learn seven new languages, or be the new Jeopardy champion.

But if proactive potato is what I get, I’ll take it.

Maybe typical is a better word. I don’t like the word normal. Normal for who? In Autism House (trademark pending), everything I’m about to describe is normal to us. But it’s also, evidently, diagnosable. So, here we are.

My oldest child was diagnosed autistic when he barely five years old. Recognizing the signs, I had my youngest assessed when he was four, and he, too, was diagnosed with autism.

And me? I was diagnosed two years ago, when I was 41, right around the same time as my youngest.

If you’ve ever gone through the assessment process for your child, you know how gruelling it is. Reams of paperwork and surveys. Hours of interviews. Does your child understand sarcasm? Does your child become upset by small changes? Do certain textures bother them?

Filling in the paperwork can be eye-opening for some parents. It was for me. And like so many other late-diagnosed women, it was this process that made me question whether I was just anxious, depressed and weird, like I’d always thought, or anxious, depressed, weird AND autistic.

Long story short, they get it from their mama. And without further ado, here are five of the behaviours and preferences I always assumed were (neuro)typical but are actually super-duper autistic.

In a lot of instances, I knew my behaviours were a little odd, but I didn’t realize until my kids were diagnosed that they might mean something more.

1. Hating/preferring certain items of clothing

My oldest wore the same shirt every day for at least six months when he was in kindergarten. Including to bed. He would scream and cry hysterically if his “sunshine shirt” wasn’t available, so I stopped trying to make him wear anything else.

It took several months for him to be able to explain why: he liked the silky tag that ran along the seam. That was an easy “check!” on the sensory component of his autism assessment.

I knew the sunshine shirt scenario wasn’t typical because of his extreme reactions. Like so many girls where autism is missed, I didn’t have those kinds of explosions as a child (or at least not to the same degree). But the sunshine shirt got me thinking about my lifelong agitation with certain types of clothing.

I’m well into my 40s. Why can I still vividly remember the awful feel of my ballet tights from the lessons I took when I was five? Why do I still panic when I think about the gymnastics leotard that was too tight for me to roll up the sleeves? I still feel ill when I think about the time in Grade 7 that I pulled on a trendy-but-scratchy sweater but my skin was still wet from the shower. Pls hold me.

As a child, I hated formal events that required dresses or the devil’s pantyhose. As a teen, I wore my stepfather’s white work shirts to school because they were soft and baggy. To this day, I wear layers, because feeling too hot or too cold will ruin my day. I try on dozens of outfits any time I have to go in public — not to assess how they look, but how they feel. I need to be completely dry before I get dressed, but I also need a shower every morning or I want to crawl out of my skin. I can’t wear wool. If my pants are tight I become a monster.

These are some of the stories I eventually told the psychologist who diagnosed me. Looking back, while I may not have thrown obvious fits, I instead resigned myself to a lifetime of near-constant sensory agitation. Is that any better? God, no wonder I’m so cranky.

I have slowly let go of uncomfortable clothing since my diagnosis. I’ve stopped wearing most sweaters. I donated every pair of jeans that dug into my waist. Underwire? Forget about it. I live in soft t-shirts, baggy sweatshirts, droopy jeans, rompers and running shoes. I look like Adam Sandler but I feel great. It’s one small way I can reduce my daily stress, so why wouldn’t I?

I consider it a kindness to myself, and to the five year old who quit ballet because tights are the fucking worst.

2. Skin picking

I’ve always picked. Always. Scabs, pimples, bumps — if it’s raised, I’m gonna pick it until it bleeds. Gross, I know. But I always thought it was just a bad habit until I learned about stimming.

I had a crash course in stimming with my eldest’s lobster claws. That’s what I called his finger crossing in Kindergarten. It was a stressful time for him. Covid kept closing and re-opening schools. We’d recently moved. He had a baby brother. Sometimes we had to go months without seeing other family members due to lockdowns. No wonder all his symptoms came to a head in 2021.

And for about a year, he kept his fingers crossed at all times. All four fingers on both hands. He held a pencil that way. Ate that way. Played that way. I was worried he was damaging his hands. Then, with the help of the many therapists and mental health professionals I worked with that year, I realized he was comforting himself. He was stimming.

His stimming was obvious. The lobster claws weren’t exactly subtle. It took me a few more years to realize I’d been doing the same thing with my skin picking, and eventually, toenail massacring.

I won’t be sharing foot photos. This isn’t that kind of internet. But the temptation to rip off my toenails is strong, and constant. I keep all my nails clipped short for this reason. I wear socks all the time. For me, it’s more of a sensory issue: I think I’m hypersensitive to any perceived imperfection on my body. Bumps need to be smoothed. Scabs must be eradicated. Long toenails need to go.

Anyway, shocker, it’s autism.

3. Food preferences

Picky eating is a well-known red flag by now. And my kids might be among the pickiest. My youngest is trying to live on blueberries and air. He will silently and willingly choose hunger over one of his few safe foods.

My oldest is more adventurous now, but it took years of exposure to get him to try some “mixed” foods, like stir fry. He went through a phase where he wouldn’t eat anything remotely crunchy. I used to strain the broth out of Lipton’s soup and serve him the straight noodles.

Both of them have the iron levels of a tennis shoe.

I never considered myself a picky eater. In fact, if you ask me, I’ll tell you I like everything.

Except yogurt, in all its forms, which I have never tried a single spoonful of in my entire life and never will. And bananas — just the fruit, not the flavour — which are often handed out at races I run and which I’d rather pass out on the course than consume. Flavoured beverages. Most beverages, actually, other than water. But I can’t drink water out of re-useable water bottles, because ew. Cherries — flavour and the fruit. And raisins, the thought of which turn my stomach, which I have also never tried and never will. Ice cream with “stuff” in it. Milk. Flavoured chips. Gum. Smoothies. Flavoured bagels. Uncooked apples (other than Granny Smiths). Almost anything that comes in a pouch or packet.

When I was a kid I used to drop my steamed vegetables down the floor vent underneath me at the kitchen table to avoid eating them. (Until my mother went searching for the source of the putrid smell in our home, discovered my stash, and moved my chair). I would spit out all my mouthfuls of chewy meat and hide them in napkins or under mashed potatoes.

All this to say, I never really thought about my own food preferences until I started thinking about picky eating in my kids and how much texture played a role.

When my psychologist asked me if I was a picky eater, I said no. Then, with further prodding, I described all of the above. Plus my daily bowl of oatmeal that I prepare the exact same way every morning, and the 10am toast I have for a snack with my perfected ratio of butter to peanut butter, my daily Starbucks cappuccino, and the painstaking effort to make sure the yogurt I serve my children never touches my flesh, annnnnd yeah.

Autistic as hell.

4. Collecting items obsessively

My oldest son collected stuffed penguins. He has hundreds of them. His bedsheets are penguins. At Christmas, he decorated an entire penguin tree in his bedroom. There’s a penguin clause in his IEP at school (“student may bring a support penguin to class”).

It’s a little on the nose, stereotype-wise, and was another easy “check!” on his autism assessment. Same with my youngest, who collected Hotwheels cars and was obsessed with lining them up and arranging them by colour. Check, check!

Like so many undiagnosed autistic girls, my own collecting flew under the radar. I collected the Baby-Sitters Club books by Ann M. Martin. I had every single book in the series, including the Mysteries and Super-Specials. I was in the official fan club. I had the collectible dolls, which were not available in Canada and required a trip to the U.S. Posters, calendars, bookmarks.

There’s a photo of me from when I’m about 11 years old and my mother had forced me to get fresh air. I’m begrudgingly roller skating in my driveway, all knobby knees and awkwardness. Holding a Baby-Sitters Club book in front of my face.

I still collect books. I don’t like when other people touch them, so if I lend you one, please know it means you hold a special place in my heart. Same goes if I let you drink from one of my 30 or so collectible Starbucks mugs that I like to store in neat rows.

Again, I never thought about what my own collections might mean, or how particular I am about them. It’s not like I’m obsessed with trains, right? Or penguins?

Check, check! It’s autism.

5. Being the funny one

I realize I may be over-selling myself here by calling myself the funny one. But I have always loved making people laugh.

I crack jokes and one-liners. I share outrageous stories. I write stories about my own life in the hopes of entertaining others. I think long and hard about Facebook posts, photo captions, and every message I send to my colleagues on G-chat. It feels good to make people laugh in my daily editorial meetings, or over drinks at book club.

I run over these lines in my head at night, practice my stories in the shower, obsess over what I’ve written and re-read it over and over and over and yep, there it is. Check!

I only realized this is a form of masking after years of watching my autistic son act the class clown at school, then come home and absolutely shut down. He’s a different person entirely in social situations. And so am I.

I’m constantly worried that people who only know me through my writing or social media will be disappointed when they meet me in real life and realize I’m quiet, awkward, and probably counting the minutes until I can go home again. When I make it to my book club, I tend to overshare, tell self-deprecating personal stories until we all have tears rolling down our cheeks, then abruptly call myself an uber and peace the hell out.

I love those women dearly. I look forward to book club very much. But my performance has a time limit, and unless I’m going to get very drunk (the autistic woman’s favourite social crutch), I risk peeling off all my fingernails and needing three business days to recharge my battery.

Now that I understand how much I mask, and the toll it takes, I try to allow myself more rest in my daily life. I read in silence once my kids are asleep. I go for walks and coffees with my one autistic friend and we just take turns blurting out our special interests (currently, we’re both trying to write books, so it’s mostly that).

I remind myself I don’t have to be funny to be liked. I don’t have to be liked at all, really. I’m 43. I have kids who adore me, family who loves me, friends who appreciate me, colleagues who get me.

I don’t have to act. I can just be… me.

No, I wasn’t hit by a truck. This is just me living my life on a fairly typical Saturday.

I have chronic pain. Back pain, specifically. I honestly can’t remember a time in my life that my back didn’t hurt. Even as a child, I would writhe in bed, fantasizing about jabbing a butter knife into the strip of muscle alongside my spine. By the time I was a teenager I would beg anyone and everyone to massage my fiery, aching shoulders.

I think I was 16 the first time I experienced “throwing my back out,” ie. that sharp, radiating lower back pain that comes out of nowhere, rendering me barely able to move. I was a competitive swimmer at the time. OK, fine, I won’t lie to you. I was a competitive synchronized swimmer at the time. Listen, I was a very awkward, uncoordinated teen. But I was fairly good at this one, weird sport.

Anyway, I remember I had a competition on a weekend when my lower back was, for lack of a better word, absolutely fucked. I wasn’t the best swimmer on my team on a good day, but what I lacked in technical skills I like to think I made up with artistry? Not that weekend. I came dead last in the technical skills part of the competition out of hundreds of other girls. I remember sobbing my way through my upside-down splits, not sure how I would even hoist myself back out of the pool after.

I had a boyfriend at the time, and a few days later he playfully smacked my butt in the hall at school and the pain in my lower back was so intense I almost barfed. I vividly remember my desire to punch him in the face.

The friend I didn’t ask for

Pain has always been a constant companion. It followed me to university, where I would sometimes spend several days at a time in bed, unable to move or function. I started telling people I had migraines, because how else could I describe what was happening to me? When it was bad, everything was on fire. Blood flowed through my body like hot lava. I couldn’t eat. Couldn’t sleep.

While the pain was always there, I would sometimes have those acute flareups when I “threw my back out.” I never did anything to injure myself, and yet I was injured. Delicate. Weak. I took a back support pillow to see a Broadway show on a trip to NYC. I wore a pain patch under my wedding dress and warned my new husband not to dip me on the dance floor.

I’ve seen every specialist and tried every treatment from a very young age. Physio, massage, chiropractic, osteopaths. I’ve had X-rays, scans, MRIs, bloodwork. It’s not that nothing is physically wrong. In fact, there’s plenty wrong. There’s all kinds of shit going on in my back. It’s just that none of it is easily treatable.

I’ve been diagnosed with tension headaches, migraines, TMJ, and a degenerative type of arthritis. I’ve been prescribed antidepressants, a succession of progressively stronger ant-inflammatory pills, and in my worst times, opioids. I’ve consumed so much Tylenol in my lifetime I assume my liver is just a leather pouch at this point. A deflated football, probably.

What helps? Nothing. Wild, right? I mean, after a lifetime of pain, I have found certain strategies to help manage it, but it’s always there, threatening to flare up. I use heat every night. I take a prescription every day. I stretch a lot, and see a massage therapist once a month. I lie flat on the floor. I avoid twisting, or bending quickly. I brace myself when I have to sneeze or cough, not just because I birthed two boys with 90th percentile heads.

Most important, for me, is exercise. I usually try to run every second day, because movement helps keep me from stiffening up. Plus, the adrenaline of running until I feel like my legs will snap off is a natural, if temporary, painkiller.

At this point, I’ve accepted pain will always be a part of me. I’ve learned to live with it. And so, I’ve learned, have a lot of autistic people.

The autism-pain connection

Autism and pain are kind of a chicken and egg situation. Are we more prone to conditions that cause pain, or are we more sensitive? Or both?

On the one hand, numerous studies have shown that chronic pain is significantly more common in autistic people than in their neurotypical peers. Studies have found elevated rates of certain conditions, including headaches, gastrointestinal pain, joint pain, and conditions such as Fibromyalgia and Ehlers-Danlos syndrome.

Some researchers have found a connection between autism and joint hypermobility, which can cause chronic muscle and joint pain. I sometimes look at my double-jointed elbows, and wonder: is that where this all stems from? My effing elbows?

On the other hand, research also suggests autistic people experience pain differently. Because autism is associated with differences in sensory processing, pain signals may be interpreted differently by the nervous system. Some autistic people are more sensitive to pain (hyperalgesia).

I look at my children, who feel every hurt so deeply, and know this must also be true. My nine-year-old screams like he’s been shot when he stubs his toe. A mild stomach-ache is unbearable to him. My six-year-old says tickling is painful and asks me not to stroke his back when I cuddle him.

Autistics might also have a harder time communicating their pain. They may not verbally report pain even when it’s significant. Sometimes, one of my kids will have a shocking meltdown when I tell them screen time is over, or scream for hours over something that seems insignificant. And then I’ll later realize they had strep throat or a flaming ear infection.

Chronic discomfort can be difficult to identify and describe, and I know this is true for me, too. How do I describe something that’s always there? What kind of baseline are we looking at?

When a doctor asks me to rate my pain on a scale of one to 10, I panic. It’s too subjective. My brain starts melting. Let’s say I’m feeling… eight. But is eight for me the same as eight for everyone? Are we talking my worst pain, or someone else’s? Would other people who aren’t already used to daily pain rate themselves higher? Lower?

What if my seven is her four? If I say nine, will she think I’m exaggerating? If I say six, will she think I’m not in enough pain to justify my visit to her office? How do I know what a 10 is if I’ve given birth twice and broken my leg but never been attacked by a bear?

“While chronic pain is a frequent co-morbidity in autism, pain management in this population is often insufficient because of difficulties in pain evaluation, worsening their prognosis and perhaps driving higher mortality rates,” notes the authors of a 2022 study in Frontiers in Psychiatry.

Cool. Fun. Great.

So now what?

You may have guessed by now that I’m in the throes of another flareup. Hence writing this in bed. Once again, I didn’t do anything to injure myself, but I am injured. Maybe I breathed funny. Blinked too aggressively. Could be anything, really.

This is a particularly bad bout. I had to take a few days off work. I lost my two-year weekly running streak on Strava, which I’m feeling quite dramatic about, and had to drop out of a race next weekend. I was prescribed medication that came with a mandatory naloxone kit. I took two then locked both in a cupboard in the back of the laundry room. The same spot where I store the bleach, hide the elf the on the shelf and keep the children’s teeth. That closet is a horror show.

In my low moments, I wonder if I’m just over-sensitive to pain. Maybe someone else would be functioning normally in my shoes. Maybe I’m just “that person” the doctor hates to see coming. Because of this, and because I know there’s so little that can be done, I rarely seek out medical help.

But Monday was excruciating. I was sweating, grimacing, writhing in pain. I couldn’t get socks on my own feet. Nothing helped, no positions eased the turmoil in my back. I tried to lie on the floor and wasn’t sure I could get back up. My rheumatologist was out of the country. My family doctor couldn’t see me and the receptionist suggested I try urgent care. At that point, I was desperate enough to take her advice, and I went. It was too painful to sit in the waiting room chair. I hunched in a corner and tried not to barf.

Finally, I saw a doctor. And she asked me the dreaded question.

“What’s your pain on a scale of one to 10?”

At that point, I was lying on my side, unable to sit up, gripping the bedrails so hard my knuckles were white.

“Nine,” I finally answered. For once, it felt justified.

She nodded, ordered me some pain meds, and told me there’s nothing else they can do. A lovely nurse gave me a shot and two pills. When I felt like I could walk, I shuffled out the doors, limped down the street to a bakery (which took what felt like three business days), and inhaled a butter tart. Then I realized I was likely pretty high and went home.

Five days later, I’m starting to feel a little better. I was able to walk to the school to help pick up the kids yesterday. I went for a massage this morning. And maybe in a week I’ll be able to run … if I can get over the fact that I have to start a TWO-YEAR STREAK over again.

All in all, I look forward to dealing with my regular, daily back pain instead of this fancy, spicy back pain.

If you have chronic pain, feel free to commiserate with me in the comments. Just don’t ask me to rate how I’m feeling on a numerical scale, OK? Because truly, I have no idea.

But first, I need to back up. I recently discovered a hidden gem. And I truly do mean hidden. It’s in a small town about a 30 minute drive from home. It’s on a road that leads to what looks exactly like an abandoned industrial park, probably because mostly, it is one. It’s inside what feels like a massive storage unit.

It is the best indoor play area I’ve ever found, and because of all of the above, it is inexpensive and never busy. There’s a massive soft play structure. A climbing wall. Laser tag. Mini putt. Arcade games. A full-service canteen and ice cream counter. And a small movie theatre. It’s quiet. No background music at all (maybe because of the movie theatre, or maybe because I’ve stumbled into a magical realm?) My kids ADORE it and have spent entire days there playing, and I have happily watched them while snacking on poutine and browsing DVDs from my youth. I’ve only ever seen a handful of kids there at a time — usually to play for a while before seeing a movie.

We don’t go for the movie. We go so I can set my feral boys free to roam in a contained space.

This weekend, we were driving back from a camping trip when I suggested we stop at the “movie theatre” on the way home. It breaks up the hour-long drive, and if that doesn’t seem like a drive that needs to be broken up, I welcome you to sit in a car with two autistic boys.

As always, they scampered off to play while I ordered food. There were a few other families there.

My 9.5-year-old excels at finding the weak spot in any situation, and exploiting it. This time, he found a ride-on car in the back room near the climbing wall, and asked the manager if he could ride it into the main room with the play structure. The manager grimaced. Thought about it. Looked at my son’s pleading face.

“Fine,” he muttered reluctantly. “Just be careful.”

My kid whizzed off gleefully. I barely had a chance to sit down by the play structure before I looked up and saw my kid sitting on the car at the very top of the two-level slide. His eyes were gleaming. He was ready to cause some shit.

“Stop!” I shouted before he could launch himself straight through the bunker wall. “Don’t you dare!”

As my husband negotiated with my son to relinquish the car, and my son argued relentlessly before finally kicking it down the slide, the woman sitting next to me chuckled.

“Oh, my son would definitely try the exact same thing and react the exact same way.”

To quote a classic 1993 ballad: Whoomp! (There it is).

I’ve learned not to ask if other kids are autistic

Once you’ve gone through the process of having one kid diagnosed, then the other, and then yourself, you start seeing autism everywhere.

I see it in my colleagues, in certain friends, in my extended family, in book characters and movie heroines, but more than anywhere else, I see it in other kids. Kids at the park with very rigid sets of rules for pretend games. Kids who come over for play dates, request extremely specific snacks, ask me blunt questions, and walk on their tiptoes. Kids having a meltdown in the family change room at the pool because their dry clothes are clinging to their wet bodies (shudder).

In other words, kids who act like my kids.

I get excited when I see these kids, thinking I’ve found a similar friend for my boys and a comrade in their parents. If you’re an autistic parent or have autistic kids, you know the feeling I’m describing.

Maybe what I’m about to say next seems obvious, but if not, here’s a little tip from one autistic brain to another: you probably shouldn’t ask a kid’s parents if they have the ‘tism. Not unless you’re 99.99 per cent certain or the parents have dropped some serious hints (key words to listen for include: spectrum, therapy, sensory, or better yet, “he’s autistic.”)

Years ago, I quickly learned the hard way that eagerly asking the parents of an undiagnosed kid if they’re autistic will, at worst, insult them. Because “autism” can sound scary to neurotypical people. I get it. I was neurotypical myself once (guys, it’s a joke). But seriously, if autism isn’t on your radar, you don’t need some strange lady suggesting something might be “wrong” with your kid.

At best, it will send them into an internal spiral of self-doubt and paranoia, maybe eventually leading to a diagnosis, or maybe I’m way off and your kid just likes cucumber with a sprinkle of pepper and grind of fresh sea salt at all play dates.

Either way, no one wants that.

So I just chuckled at the woman sitting next to me in the play area this weekend, even though my autism alarm bells were ringing. But I did start listening for clues as we talked about our kids.

We laughed about how our kids will push every limit. Spoke about how much we like bringing our boys here to run off their boundless energy. Shared stories about how her son only eats fries and mine only eats grilled cheese. I watched her son loudly announce the strict rules to a game of tag to my boys, and I watched her say, “William, quiet voice please, remember people are watching a movie,” and, like, if this kid wasn’t autistic I was ready to hand over my own diagnosis to the proper authorities because clearly my vibes are way off.

Finally, she dropped some key words, mentioned a co-ordination disorder, and I pounced. Subtly, though, with sensitivity, and class.

Me: A co-ordination disorder? COOL!

Her: Um.

Autistics, assemble!

Anyway, long story short, her son is autistic, with ADHD, just like my older son (my younger is just plain autistic, like me). Bonus: the mom is also autistic. Quickly, we dropped the cursed small-talk, and swapped assessment timelines, our preferred supports, medication woes, upcoming Autism Ontario events, and griped about how long we’ve both been on the waitlist for funding.

In the background, our three autistic boys played their elaborate game of tag while shouting out blunt orders to each other and occasionally bellowing out their favourite memes (“CHICKEN? BANANA!”)

What were the chances? I took out my phone to text my sister, and when I looked up, a fourth boy had joined them. He looked older, a teen, but was happily playing with the younger kids. He bounced around in bare feet, yelled excitedly, tagged my six-year-old, reinforced the elaborate rules in a voice that was far too loud for the situation, and flapped his hands.

No… not… another one?

I looked at the mom sitting next to me — my new autism friend — and she laughed as the teen whizzed past us.

“The whole spectrum is here!” she said.

I have never, not once in my life, watched my kids play with other kids so easily. Everyone was too loud, too fast, too blunt, and too demanding. Not one of them had a sense of boundaries or personal space. Not one of them wanted to stick with any one activity for more than 30 seconds. They switched between tag, and freeze tag, and the climbing wall, and hide and seek. But they did it together. All while shouting and singing weird YouTube shit.

I didn’t have to correct my kids once, or remind them to give people space, or let other people have a turn. Because none of these kids were doing any of that, and no one gave a shit.

It was the most beautiful thing I’d ever seen.

My six year old was taking a break to try the grilled cheese I’d ordered (spoiler, it didn’t “smell good” so he chose hunger), when a younger boy came up to him. He’d just arrived with his dad. This boy got right into my kid’s face, tapped his shoulder and said, “hello!”

My kid was unphased. A few minutes later, the kid came back and did it again, this time more insistent, his face just a few inches from my son’s.

tap tap Hello!

No. NO. How was this possible?! Another one?!

My six year old blinked and said, “You know, just because people want to be your friend doesn’t mean you have to be theirs.”

Oof. My little one can be savage with the fact drops. But the other little boy just smiled and ran toward the play structure. My kid followed him. Soon, all five boys were playing freeze tag, happily, elaborately, loudly.

Emboldened now, I walked over to the older gentleman who had brought the teen. I was more certain about him than the little boy. I was more worried about insulting him by mistakenly calling him the kid’s grandfather than suggesting the kid was autistic.

“Hi, it’s nice to see our kids playing so nicely together,” I said. “Is yours by any chance autistic?”

At this, another man in the room looked up. He pointed to the little boy, “yep, mine is.”

I KNEW IT.

And the older man confirmed his grandson (ah-ha!) also had autism and ADHD.

My. God. Five of them.

How, even?

Considering that there are maybe four autistic kids in our entire massive school, and two of them are mine, the chances of five autistic boys all meeting at a random indoor playground in a small-town industrial park’s off-brand movie theatre is wild to me.

I started to wonder if there was some kind of honing signal on the roof. I started to wonder about ESP, and psychic abilities, and the inter-connectiveness of The Universe. A friend sent me a podcast called “The Telepathy Tapes,” about telepathic autistics, and I started getting a little freaked out.

But I think there’s probably a simpler answer. It’s not The Universe. It’s the movie theatre.

For years, I have been on the hunt for activities, places and vacations that work for my family. I’ve refined it to the point that we have a shortlist of restaurants that serve both grilled cheese AND chicken fingers (each kid has a different safe food), campgrounds and hotels that feel like home, activities where they won’t be scorned for making their own rules, and play areas where they can bounce around like maniacs without getting overstimulated.

Without meaning to, at least not consciously, I have made an entire autism-friendly world for my kids outside of school.

It’s the same reason we made friends with two autistic kids at our weekly trampoline class, and why I recognized an autistic girl at the KOA campground we were at this weekend from a different KOA campground we also frequent in the area.

And it’s probably why four different families all brought their autistic kids to the off-brand movie theatre with no background music, and no crowds, on a Holiday Monday.

I didn’t ask the other parents, but I didn’t have to: they brought their kids there that day because it’s one of only a handful of places where our kids can be themselves. And how lucky for all of us that we all went that day, and our boys could play with new friends? How rare for kids who are so often labelled too weird, too loud, too busy, and too much? What a gift.

On my way out, I joked with the manager that he’d created an autism haven. He looked confused.

“Are all these boys autistic? I thought maybe the teen and your little one, because you said he only eats grilled cheese…”

“All five are autistic,” I said. “Isn’t that funny?”

“Weird,” he said. “Sometimes I think I might be, too.”

The grown man working in a retro children’s playground filled with arcade games, collectible DVDs and movie posters, and no background noise?

Whoomp! (There it is).

I see you, every single night, lying in bed with your kid who is “too old” for that, but needs you there in order to fall asleep. I see you at midnight on his floor, and at 4 a.m. when he wakes you up ready to start his day and asking for his iPad. I see you setting timers and giving 20, 10, 5 and one-minute warnings for getting dressed. I see you wiping away their tears then chasing them down the sidewalk holding their toothbrushes.

I see you chugging coffee, in sweatpants at school drop off, having already lived 30 years before 9 a.m. I see you hugging them fiercely, getting one last whiff of their sweet heads, hoping and praying that today will be a good day. That people will be kind.

I see you, explaining to every teacher, every coach, every instructor, every day, that your child isn’t just “bad,” that they don’t mean to be defiant and rude. That they have a disability, even if they don’t look like it. That they just need some extra patience, extra understanding, extra time, extra kindness.

I see you responding to emails that your child was on the roof of the shed again, or rode his skateboard during running club, asking in that tone, “can you please have a talk with him about making better choices?” I see you responding, “sorry, yes,” while thinking in that tone, “if you don’t want my kid to climb the shed, don’t put a climbable shed in the play yard,” and “skateboarding laps sounds like thinking smarter, not harder, to me, BRENDA.”

I see you on the phone, at appointments, and in meetings, all for your child, sometimes every day. I see you discussing medications, strategies, consequences, visual schedules. I see you paying for OT, or speech, a new wobble board, more fidgets, to install a swing in your basement, instead of the new bra you desperately need and the anti-aging cream you’re hoping might fix your entire life.

I see you serving butter noodles for the 17th dinner in a row, worrying about vitamin deficiencies, wincing at the screaming when you try to serve a different brand of yogurt. I see you reading “picky eating” advice that makes you laugh out loud, people like BRENDA suggesting smoothies and meatballs and vegetable-infused sauces, while you’re wondering how much protein is in a Ritz cracker. I see you making the same lunch every day and hoping the teachers don’t judge you for it. I see your happy tears when your kid finally agrees to lick a purple Flinstone vitamin. Maybe they won’t get rickets, after all.

I see you simultaneously charging the iPad, laptop, Switch, and Smartwatch so that nothing will ever run out mid-use. I see you watching other kids reading books or sitting quietly in restaurants, wondering how in the actual hell.

I see you worrying that the screen time is rotting their brains, and weighing that guilt with the knowledge it also helps them regulate; that the repetition is soothing, and don’t these babies of yours deserve some calm however they can it? I see you telling them, “tomorrow, there will be fewer screens!” and immediately proving yourself a liar. Well, maybe the next day, then.

I see you leaving the hockey game because it’s too loud, the fair because it’s too crowded, the movie because it’s too hard to sit still. I see you signing up for soccer your child will never play, and summer camps he’ll refuse to attend, watching your money burn. I see you, your cheeks flushing when your child finally does decide to play soccer, but only to kick the ball as high in the air as it will go while the soccer moms sigh and BRENDA mutters something about winning games.

I see you hoping, and trying, and persevering, because when you do find the activity that works, the joy on your child’s face is worth it. Even if that activity is riding the escalators at the mall over and over and over and over. Fuck it, soccer moms, you’re an escalator mom now. We ride at dawn and we have Ritz crackers.

I see you, cringing at calling yourself an “autism mom,” knowing there’s stigma even within the autism community about this fleet of warrior moms advocating for something they barely understand themselves. But what else can you call yourself, really? And yes, you are an advocacy stereotype — because you have no choice. You keep an IEP in your back pocket, psych evals in your purse next to the Ritz crackers. You are a walking, talking PSA for autism acceptance and inclusion because you have to be. Because your babies deserve nothing less than a Fierce Warrior Mama Bear (barf) constantly at the ready to fight remind BRENDA that autism means they might have a harder time making “better choices.”

I see you, your heart bursting with love for these beautiful creatures you made. I see you waiting for others to realize what you already know. What you’ve always known. That your babies are perfect. Maybe even better than all the other babies. That on the other side of the challenges there’s constant joy and wonderment at their kindness, their generous hearts, their wildly impressive minds.

That when they’re not on the roof of the shed or glued to their iPad, they’re buying you purple flowers for Mother’s Day because your favourite colour is purple. That when you lie in their bed every night, they’re wrapping their little arms around you and saying, “I love you all the way to the outer universe. I love you more than infinity.” That because they feel emotions so deeply, their laughs are louder. Their smiles are bigger.

That just when you think you have nothing left, that you’re depleted, that your soul has already left your body, your child will climb into your lap to tell you how many syllables are in “ox-id-iz-a-tion,” and you will melt. You will squeeze them and wonder why everyone else can’t see what you see.

And here’s the answer. It’s because you are their safe space, Autism Mom. You. You did that with your unconditional love, your annoying advocacy, your endless patience. You alone get to see the very best (and the very worst) of your babies, because they are secure in their knowledge that you will always, always, love every cell of their bodies.

How lucky are we?

I see you, Autism Mom. And just know, if we pass each other on the escalator, that I’m raising my seventh coffee of the day to you.

I’ve been a published journalist for nearly 20 years. I’ve worked for some of the biggest newsrooms in Canada, like the Globe and Mail, Postmedia, HuffPost Canada and I’ve been at CBC since 2021. My byline has appeared in publications across the country.

I sit down at my desk every morning and I write for a minimum of eight hours, sometimes (often) longer. I’m lucky that this is how I get to make a living; so lucky that sometimes I still can’t believe this is my job. But in my mind, I’m a journalist. A reporter. A writer of facts and events. I’m good at it. But am I a Writer, writer?

Here’s the problem: like so many of the truly self-loathing, I dream of writing books.

It gets worse: fiction books.

You might think, given how many dozens (maybe hundreds?) of personal essays I’ve written for official publications like Today’s Parent and HuffPost over the years, that I’d lean into non-fiction or memoir.

You’d be wrong. I want to write book club books. I want a colourful cover. I want people to debate my main character’s questionable choices. I want Reese Witherspoon to promise you won’t be able to put it down. I want Oprah to promise it will change your damn life.

I finally started working on my first book when my youngest was a toddler. I figured it would be easy since I’m already used to writing anywhere from 700-1,500 polished words in a day.

No one understood my main character

But I struggled so much more than I expected.

(The next few paragraphs are lifted from a Q/A I did for my friend and fellow tortured writer Julie M. Green. You can read the whole Q/A on her substack, The Autistic Mom).

First, it turns out I am not imaginative. I am very good at writing about my own experiences in vivid detail. I’ve written plenty of parenting columns without breaking a sweat. I’ve been writing the news for nearly 20 years. But when it comes to imagining the experiences of others and creating plots that haven’t happened in real life? Total block.

No matter, I would write a book based on my own life, then, and build a main character based on myself.

So, I did that a few summers ago. The words came more easily. Then I reached out to a freelance editor to help me with my (atrocious) first draft, and it was her questions about the main character, Meghan, that made me realize what I always thought was typical was maybe… not so much.

They didn’t always understand Meghan’s motivations, her behaviours, her anxieties and resentments. In many ways, she came off as unlikeable. Why is she always so agitated? Why would she self-sabotage like this? Why did I include an entire section about ceiling fans? Why does she peel the skin off her feet?

Fine, I’ll get an assessment

Right. So, I wrote a second draft, and then a third, and then I hired another freelance editor. She had the same questions about Meghan. And when she pushed me to dig deeper into her motivations, I started to recognize some truths I’d been avoiding ever since my first child has been diagnosed autistic.

Around this time, I decided it was time to look into my own assessment. I found a lovely neuropsychologist in Kingston who works with adults. I went through a gruelling, full day of IQ tests (bringing up all sorts of childhood trauma from my “gifted” days), reams of questionnaires and several interviews.

I described my rigid breakfast routine. My mug collection. The devil’s ceiling fans. How exhausted I felt after socializing. How awkward I felt in public. All the times I felt like an imposter in my own life.

I pitched my book to 25 agents and three independent publishers, and was rejected 28 times. In the end, after trying again and again to “fix” it, I had to accept that despite all the time and effort (and money), the book had failed.

But I did pass one test: I was diagnosed with level one autism (also, depression and anxiety, which I’m not convinced wasn’t a result of trying to write a book, but I digress).

Autistic, and not a quitter

This is the part where a sane person might admit that writing a book had really just been an extremely time consuming and expensive journalling exercise. In trying to write fiction, I had learned truths about myself.

Time to move on, right?

No. I wrote another damn fiction book.

I’m still not very creative. It’s still based on my own experiences. But this time, I went in knowing my main character is autistic. I wrote her based on my own truths.

Maya is awkward, ambitious and often anxious. She thinks in blacks and whites and absolutes. She’s nostalgic for home but doesn’t know what home even is anymore. She’s autistic, but doesn’t know it.

Is this book any better than my last? I think so. Will it ever be published? God, I hope so.

Will Reese’s people be reaching out about possible Netflix deals? Well. I can still dream.

In early November, my autistic nine-year-old came home from school confused and upset. I typically meet him after the bell and walk him home. I ask about his day — sometimes he tells me about it in detail, sometimes he just says, “good,” sometimes he says nothing at all and runs ahead to catch up with friends.

This time, he didn’t answer, but walked with me silently, his arms and legs stiff.

I grabbed his hand and asked what was wrong. Tears welled in his eyes.

“Madame won’t let me hang up my art.”

My boy has a hard time expressing himself when he’s upset, so it took some time to get the whole story out of him. But eventually, he told me.

That day, he’d worked hard on an art project for the school Remembrance Day ceremony. All the kids were to make a black and white boot, and add grass using pencil crayons.

But my kid? He wanted to make it as beautiful as possible. So, he used markers. And he coloured the sky blue.

He had an idea in his mind of how he wanted it to look, which was different than how the teacher said it should look. And because of that, my son explained, he couldn’t hang it up in the gym alongside the other art projects. He pulled his rejected boot out of his backpack as proof.

I told him it was beautiful. Different, and beautiful.

Was I missing something?

I emailed his teacher right away. Surely I was missing something. Up to that point, she’d generally seemed understanding that my boy is autistic; that he thinks differently; that he doesn’t always act the way we expect other kids his age to act.

Plus, it was a children’s art project. Unless I was misunderstanding, this isn’t a hill to die on, right?

But her response was firm: he didn’t follow her very clear instructions. He used markers. He added a blue background. He refused to redo his drawing when she offered. So, as she also explained to him, she “won’t be able to hang it with the others in the gym.”

I asked him why he didn’t want to redo it.

“Why would I redo it, Mama? I already finished it.”

Yes, exactly.

My boy can be inflexible. It’s one of the hallmark traits of autism. Rigid thinking. It can be infuriating when he challenges authority. I get that. I live it every day. This is a child that will not, cannot, be pushed. Ever. He will happily follow orders that make sense to him and that he wants to do, or better yet, are in fact his own ideas. This is how he is. It’s how he’s always been. This is autism.

But it was also just a boot. And he’s just a child.

What a metaphor

That was the day I realized that perhaps his teacher didn’t understand him or his disability at all. I should have fought harder for him then. I should have listened to my instincts.

But after six years of advocating for my child in school I’ve had to learn to pick my battles. It was barely November. How much did I want to push this with someone I needed to have on my kid’s side until the end of June?

And I was also exhausted. I’d already attended multiple meetings with his teacher about his IEP, his silly lunchtime behaviours, the lack of resources to supervise him. Advocating for an autistic child is a part-time job, and I have two autistic children and a full-time job.

So my husband framed his beautiful boot and we hung it up in our front hall. His teacher and I exchanged more emails. Three days later, she told me that my boy agreed to redo the art project in black and white. She let him use a marker on the grass as a compromise. No blue sky.

Now, she would hang it in the gym. Now that he had conformed, he could be included. What a lesson to teach an autistic child who will always, always, be just a little bit different.

Different, and beautiful.

A black and white boot

My own eyes welled up with tears last week when I told my son’s principal about the boot.

We were in a meeting to discuss an incident that took place with the same teacher. An incident that was the culmination of months of frustration, misunderstandings, lack of resources, and my boy failing to thrive in an environment where he wasn’t being properly supported.

I thought I was exhausted in November, but that was nothing compared to April. The emails were constant. So were the meetings. I was worried about him and his self esteem. I was worried about her ability to tolerate him given her growing frustrations. Then, I got a call from the principal that there had been an incident. The teacher crossed a line.

The next morning, I told the principal about the boot. I told her it’s still hanging in my hall to remind us all that you can be different, and beautiful. She looked sad.

With two months left in the school year, my son is switching classes. It’s the best option. But I told the principal that this entire year has been such a shame. Because I liked the teacher, at first, before her frustration got in the way. I liked that she pushed him academically. I liked that she had firm boundaries and rules.

The principal nodded.

“Clear boundaries are important for all children,” she said.

“Yes,” I agreed.

“But there has to be flexibility within those boundaries,” she said.

“Exactly,” I added. “We don’t want them to be black and white boots.”

I was distracted, switching my wiggly boy’s indoor shoes for outdoor ones and trying to find his hat. I’d barely been listening as she told me he’d had a good day. That he’d drawn some scribbles for me to take home. That he ate meatballs for lunch.

But at this, I looked up.

“What do you mean, he never sits with them?”

His teacher laughed. “Oh, he never has. We have circle time every day but he refuses to sit on the floor with the others. He sits to the side, in a chair. Like a little king!”

I smiled at her, tucked the information into the back of my brain, and ushered my kid to the car. Later, I brought it up with my husband, asking him if he thought it seemed odd. In the end, we both shrugged it off as another one of our glorious child’s many quirks.

So, he doesn’t want to sit on the floor for circle time. Who cares, right?

The signs were always there

It’s easy, looking back now, to see that the autism signs were always there with my first-born. But I didn’t know any different as a new mom. And it probably didn’t help that, at the time, I had no idea that I was also autistic.

Like a proper Leo, my August baby was born roaring. He burst through my perineum like the Kool-Aid man kicking down a brick wall. “Nothing wrong with his lungs,” the delivery nurses chuckled as my red-faced newborn aired his grievances to everyone in the hospital room.

I was the laughing stock of my Facebook mommy group when, at four days postpartum, I posted something along the lines of: “Help, my baby doesn’t sleep anywhere except my nipple. He is four days old.”

“Give it time,” they all said, probably shaking their collective heads at my naivety. “He was just born. He’ll sleep eventually.”

Reader, he didn’t.

Fussy, colicky, clingy.

The weeks went on. He cried so much when he was two months old that we rushed him to the ER, where we were made to watch an instructional video on colic, and a firm yet kind nurse reminded us never to shake him, no matter how frustrated (it’s possible I looked like a serial killer at the time).

He was a contradiction; an enigma of an infant who never wanted me to put him down yet was also fiercely independent. He never, not one single time in his entire first three years, napped anywhere but on my body or in the car. He didn’t use his expensive bassinet once — it was just another item for me to trip over in my exhausted haze. He might be the first baby to defy sleep training.

We started him on solids at five months. He fussed and turned his head until he was allowed to hold the spoon. He could barely get the utensil to his hungry mouth. Most of the mashed banana wound up in his eyeball. But there was only one way he would eat: doing it his own damn self.

My love for him was ferocious and overwhelming. He was the most beautiful creature I’d ever seen. Any time we went in public (which wasn’t often, see: screaming) I kept looking around, waiting for someone to notice that this was a uniquely special baby. Not like all the others. He was gorgeous, wise, with a gummy smile that could stop my heart and deep brown eyes just like my own.

He laughed gleefully, or he screamed ferociously. There was nothing in between. I was as delighted as I was dead.

Putting a name to it

And if motherhood seemed harder for me than most, well, wasn’t that just a testament to my own failings? Other moms could get their babies to sleep, after all, and spent their naptimes folding laundry and could breathe a sigh of relief at bedtime.

They did baby-and-me yoga classes and went to library singalongs and baby music classes. I know they did these things, because I was also there, but I was chasing after my baby as he barrel rolled across the floor while yodelling. Or I was ass-sweating through my yoga pants as my baby yelled at my boobs while the other moms were in tree pose.

As he got older, he became obsessed with umbrellas and water fountains. He preferred running through the halls outside any activity to the activity itself. When he was 18 months, we were politely asked not to return to toddler soccer after he joyfully led a small rebellion of screaming toddlers through the halls of an elementary school.

Spirited, creative, a character.

“He’ll be an engineer,” his pediatrician told me as he attempted to dissemble the exam table at age two.

“A future CEO,” my mother proclaimed as she opened and closed an umbrella at his command.

“Like a little king,” his daycare teacher said when he was three.

Looking back, that was the first time it occurred to me, even fleetingly, that perhaps this wasn’t typical behaviour. It would take another two years to put a name to it: autism spectrum disorder.

Still special, still wise, still uniquely his own person. Just now also with a diagnosis.

From cute to defiant

My boy hasn’t changed over the years. He’s still curious, independent, clingy, loving, stubborn and perfect. He still doesn’t sleep (take THAT, Facebook mommy groups!) He still has two modes: joy, and screaming.

He still, god help me, is obsessed with water (although now it’s the hose), and has yet to meet an examination table he can’t wrestle into submission.

And he still won’t sit in that damn circle.

You might think, five years after his diagnosis, and after dozens of IEPs and countless school meetings, that something as simple as refusing to sit on the floor with other kids could be accommodated. But you’d be wrong.

Because somewhere along the way, what was “cute” when my son was a toddler became characterized instead as defiance. I think this is probably the case for a lot of autistic kiddos as they get older. And most schools, well. They just want all the kids to sit in a circle.

I get it. They don’t have the resources to accommodate every child’s every need.

Last year, one of my boy’s teachers sent me a distressed email. She told me he refused to sit in a circle with the other kids. When she pressed him, he became defiant, shouting “no!” It was disruptive and upset the other kids, many of whom also pushed him to sit on the floor. In the end, he became irate and unmanageable.

I felt for her. I did. But I felt much worse for my son, who has been unapologetically himself from his first breath, and hasn’t changed. But the expectations have. There’s no nurturing daycare teacher chuckling at his stubbornness and offering him a chair. He’s not a little king. Instead, he’s often treated like he’s a problem.

Defiant, stubborn, inflexible.

I’m not deluded. I know my boy has to learn how to live in a neurotypical world. I know this will mean following rules that don’t make sense to him. And I know it’s only going to get harder as he gets older, and his autism gets even less palatable to others. It’s not very cute when a teenager has a meltdown over sitting on the floor.

Just like it wasn’t cute when I threw a fit because we forgot to pack my oatmeal the last time we went camping, and if I don’t eat the same breakfast every single day I choose violence.

I imagine life might be a lot easier if I had the kind of kid who sits in a circle with the others. But I don’t. And I wouldn’t change him, even if I could.

But life might be easier for everyone if people stopped expecting our autistic kids to be something they’re not. Some kids sit in the circle. Some sit in chairs. Like little kings.

It’s a question my kids often asked me ever since my older son was diagnosed autistic when he was barely five. The signs were always there, the psychologist told me. Like stars in the sky. We just needed to connect them into a constellation.

I explained to my son that everyone’s brain is different; his is autistic, Daddy’s has ADHD. His brother, a baby at the time, had a meatball brain (he really was a delightful little meatball, although he, too, would eventually be diagnosed with an autistic brain of his own).

We still say “autistic brain” four years later. But my own?

“An anxious brain,” I might answer, a nod to my anxiety disorder. Or maybe, “I don’t really know,” which was also true. But the more I learned about my son’s meltdowns over scratchy clothing tags, and then his younger brother’s love of colour-coding his toy cars, the more I did, in fact, really know.

The signs were always there for me, too. But they’re different in women. Especially if you’ve made it this far thinking you were just anxious, depressed, awkward, faking it at being an adult, like you’re actually only smart in a few highly specific areas and kind of shockingly terrible in others.

I’d felt like a hypocrite back then, hiding my own diagnosis while advocating for my boys. But I felt sheepish admitting that, at age 41, I pursued an autism assessment. What was the point? I’m a grownup. I have a job. A house. A family. A colour-coded bookshelf and a mug collection that no one can touch but me (right, there it is).

I accomplished what I was meant to accomplish, even if it felt harder for me in ways I didn’t understand. Wasn’t it kind of vain, then, to put a label on myself? To what end? Just to say I am a certain way?

I’m not sure what I hoped hearing the words, “you are autistic” would change. That suddenly my true self would emerge, confident in my awkwardness, maybe with a new special skill? (Math? Please be math). But of course, nothing changed, because the problem with masking your entire life is you don’t know where the mask stops and you begin. You question everything. Do I even like restaurants, even though I’m always cold in them and feel like everyone is watching me and I wind up making weird comments like, “do you use real potatoes in your mashed potatoes?” and then re-live that moment for the next 15 years?

I was diagnosed at 41

I was officially diagnosed two years ago. My youngest, then four, was on the wait-list for his own assessment, and in filling in his paperwork, the answers so familiar, I just knew. I knew, but still, I wanted to officially know. Then, as soon as I did, I wished I didn’t.

I hardly told anyone, but if I did, I made sure to add, “I’m not going to make autism my entire personality.” When, of course, it is. Just like I tell my boys that everything I love about them is autism, everything I love (and dislike) about myself is autism, too.

It’s why ceiling fans make me dizzy and I still vividly remember that one time in Grade 7 that I put on a scratchy sweater when my skin was still soft from a shower.

It’s why I can read a book in two days, but also can’t drive a car, am truly abysmal at math, and will often make plans with other people only to find excuses to break them so I can lie under my blankets with my snacks and my book like a gremlin until I stop wanting to pull off my skin (incidentally, it’s also why I pull off my skin).

It’s why I excel at journalism research, observing people, picking up the small details other people might miss. It’s why I can become an expert on whatever topic I’m writing about in a day, as long as it interests me. And the fact that I’ve made a living having one-sided, scripted conversations where all I have to do is ask questions to get information and then say, “OK, bye forever,” is probably why it took me so long to realize I’m not a natural at social interactions.

In fact, the psychologist who diagnosed me said it’s remarkable that I carved out the perfect career for myself — one that elevates my skills while hiding my struggles. I can become “obsessed” with whatever interests me and focus intently on my subject matter. I have zero qualms asking direct questions. My verbal and language skills are “superior,” according to the IQ tests she had me take, in contrast to some other areas of intelligence, which were, um, woof. But might explain why I get lost finding the bathroom?

Writing, then, was the correct choice. And aren’t all writers just a little quirky? I might have sought out a diagnosis sooner if I’d chosen a different career path (unfortunately, it turns out I have very few other employable skills).

In real-life social situations, I sometimes slip into reporter mode, asking too-personal questions, sharing too much back, because isn’t that how this works? The talking bit? And that’s how I’ve become known among my friends as an outrageous over-sharer and a storyteller, with a funny personal anecdote prepared for any conversation. What they don’t know is I practice those anecdotes in the shower every morning, or in bed, when I should be sleeping but my mind won’t turn off.

‘I didn’t want to be the odd one’

I wanted so badly to tell my boys my diagnosis that summer, but I knew they wouldn’t keep it to themselves, even if I asked. And asking would teach them autism is something to hide, at the same time I’ve been trying to teach them that they should always, always, be their weird and wonderful perfect selves. So I didn’t. I wasn’t ready for my kids to out me.

But then last November, in the car, we told my youngest that he had an autistic brain, too. The signs were all there, but you had to know to look. It’s the quiet ones like him who slip through the cracks, the psychologist told us. My little meatball doesn’t complain. He doesn’t really have meltdowns. He just silently and stubbornly is his own person. Content, good-natured, scary smart, would rather starve than eat anything other than shell-shaped macaroni or grilled cheese. Happy to do his own thing, as long as he can smell the security blanket he always carries. Vanilla ice cream autistic, as opposed to my oldest, who is spicy Doritos autistic.

My oldest cheered for his little brother. “You have an autistic brain!” My youngest was quiet, taking in the news, then replied, “Yeah! I have an awk-tistic brain!”

That was the moment I realized hiding my own diagnosis even a minute longer was a disservice to the two most important humans in my world. So I just spit it out, whatever the consequences. (Those would come a day later, when my youngest proudly informed Grandma he had an awk-tistic brain, “and so does Mama.”)

So, I turned around to look at my boys in the back seat. “Well, guess what guys? I had some tests over the summer and I have an autistic brain, too!”

“Mama,” asked my youngest, “do you mean awk-tistic?”

“Sure.”

More cheering. They asked if I would be coming to occupational therapy with them. I said no, I’m 41 and am what I am. Then we continued our drive downtown to buy puzzles (weird, are we sure about the diagnoses?)

Later, when we walked back to the car, I held my eldest’s hand and asked him how he felt about me and his brother being diagnosed, too.

“Really happy,” he said. “I didn’t want to be the odd one.”

There. Right there. That was the moment I realized why I got assessed even though I knew. For him. For them. To be clear, it is not selfish or vain to want to understand yourself, either. I think maybe it’s kind of brave. But for me, it was for my boys. My spicy Dorito and my vanilla soft serve, my sun and my moon. So they will never, ever feel alone in a neurotypical world.

The fourth drawer

Autism is also, I think, why it took me six months to realize I had a fourth dresser drawer. I wish I was kidding. I’d been cramming my shirts into the top three drawers for a year. Grumbling about how I need more clothing space. Three drawers; one, two, three. Tanks, short sleeves, long sleeves. A pattern. Never once realizing I had a fourth empty drawer. It’s not that I thought it was full. It’s that I didn’t even know it existed.

Until a morning in mid-November when I was putting away laundry, one, two, three… wait… what? Where the fuck did this drawer come from? My ego may never recover. But at least I have sweater space.

And that’s also what it feels like to realize you’re autistic in your forties. Like everything has always been a little more of a struggle, and you don’t know why. Like you’re constantly trying to find more space that doesn’t exist. And then one day you realize there was a fourth drawer the entire time.

The signs were always there. You just had to know to look.