Diagnosed AuDHD After 50 - My Story (Part Two)

(Read Part One Here)

After high school, and armed with convincing but tenuous self-assuredness, I started collecting degrees (and sooner than later, student loan debt) while doing what it took to be a solid (and fun) friend, an upstanding citizen, and an anchor in my increasingly unmoored family. There were points I did this while holding down a part-time job or two, once for a hot minute, three. Over-achieving was the only way I knew how to deal with my imposter syndrome. The person who keeps it together when everything’s falling apart, was my academy award worthy performance.

Failure is not an option. Never let them see you sweat.

My late teens and 20s were the salad days. I was green, and truly thought if I just kept doing all the ‘right’ things, it would magically work out in the end and life would be peachy.

Keeping up appearances, checking all the ‘responsible young adult’ boxes, and sowing quite a few wild oats, too.

Maybe, just like Mary Tyler Moore, I was “gonna make it after all.”

I didn’t know what was to come. Nobody does. I didn’t understand that every new hurdle and attempt to overcome it, was chipping away at my fortitude and “Que Sera, Sera” guise. I didn’t know that I was navigating life with a different set of wiring than most people. I didn’t anticipate that sooner than later, life’s demands would far outweigh my capacity to meet them – occasional meltdown, shutdown and episode of burnout, aside.

My body seemed to know though. It always knew.

In my late teens, I was diagnosed with IBS. Gut issues run in my family and had plagued me since childhood. In my early 20s, my IBS spiraled completely out of control during a year-long emotionally abusive relationship. In hindsight, not the first.

He was smart. Kind of a hippie. Into music. This was all my jam. Naturally, I jumped in with two naïve feet. He was also a raging control freak and absolute momma’s boy, which took me about three months to realize, and another nine to convince myself I wasn’t overreacting and should leave.  

Gaslighting – the gift that keeps on giving.

In my mid 20s when some unsettling truths and realizations began to surface that shook my foundations, and that despite best efforts, I couldn’t control, I developed debilitating panic attacks. Soon to be followed by chronic pain.

Shit was getting real and I was knee deep in it.

One afternoon, when presenting the outline for my honour’s thesis in anthropology, to a small room full of professors and other students, I blacked out but somehow kept talking. This was my first, but not last psychogenic blackout from a panic attack. I was shaken and ashamed, but never said a word. I waited for someone to mention it. That never happened. Instead, the outline I presented that day was later turned into a paper that was used for a time, by the Women’s, Gender and Sexuality Studies program at my university.

Just. Keep. Swimming.

School, family stuff, work, a social life, and a string of mostly dysfunctional romances. It was a lot to maintain, as evidenced by the bouts of IBS, chronic pain, and panic attacks.

Grin and bare it.

When I was 25, marriage. Yeah, it surprised me too.

In younger years, I was the person voted least likely to marry and have kids. Not for me, thanks. I had shit to do that involved travelling the world in a pair of cargo pants while making cool discoveries and jotting down important things in a leather-bound notebook, à la Indiana Jones. Always Indy, never the love interest.

Or maybe, I’d follow in the footsteps of one of the great primatologists – Diane Fossey, Jane Goodall, Biruté Galdikas. First, maybe I’d even be a human rights lawyer. There was still time, right? At some point, I’d figure out how to leave the hive and live the adventures I’d dreamt of since I was a kid.

Like Lennon sang, “Life is what happens to you when you’re busy making other plans.”

I met my husband while dancing on a chair at a live music show. He helped me down. A few conversations later, I knew I had met another one just like me. One look at him on stage swinging his dark hair around and belting out Mathew Sweet’s “Girlfriend,” and I was smitten. On our first official date, he walked through my door with his own blender in tow, and all the ingredients for a delicious and garlic-laden dinner. I mean, what’s a girl to do?

Much to the initial skepticism of many, and the congratulations of a few, we were engaged 29 days later and married the following year. It’s been 29 years since. We still live in the same town I grew up in, but life has been an adventure all the same.

About eight years, a new house, a lot of parties, an abandoned graduate degree, a failed home business, a difficult job loss, and the start of a teaching career into marriage, the wheels fell off the bus.

The police officers who arrived on the scene that night, repeatedly and suspiciously remarked at how calm I seemed despite just being attacked by a madman and watching him bite off the end of my husband’s beautiful nose.

Who knew ADHDers were great in a crisis? Not us at the time. 

On the heals of this devastating incident, which was bookended by a couple of other life-changing catastrophes that all occurred within less than six months, we decided it was time to have kids.

We were in our 30s, and after what we’d just been through, life needed some affirming. We were now seasoned professionals at the hard stuff, and we’d both been around and/or responsible for lots of kids. I was a teacher by then. How difficult could parenting be?

Hahaha! You don’t know what you know until you know it, right?

About a month after the last of the agonies of that era, I was pregnant.

Life finds a way.

In my second trimester, we learned I had complete placenta previa – a relatively rare and risky condition. This resulted in being hospitalized for the last six weeks of my pregnancy.

During my hospital stay, the nurses commented at how calm I seemed despite the circumstances. Apparently most people in my shoes were a little more worked up about bleeding repeatedly, suddenly, and profusely, in the last trimester of their pregnancy. In retrospect, aside from the perks of ADHD crisis mode, and a honed ability to dissociate, I think spending all that time doing nothing but sleeping and reading in a hospital bed, allowed me to recover from the trauma induced autistic burnout I was in… just long enough to (mostly) hold it together once the baby came. 

Our first kid was born premature by C-section, but after one night in the NICU, was healthy as could be expected under the circumstance.

Exhale.

After a few nights stay in hospital, where in a very vulnerable and overwhelmed state, I had an anti-partum nurse yell at me (for real), “You smart people are the worst!” - the three of us arrived home from the hospital.

There was relief and cause for celebration after all the things. There was a lot of change too. My body and my time were no longer my own. Figuring out this marvel of a new human, was a big adjustment. Thankfully, my husband was a natural at parenting.

Teamwork made the dream work, and I credit our opposing circadian rhythms for saving my sanity. I was an early riser, and he was a night owl. Perfect combination when you have a newborn who isn’t awesome at sleeping, and who projectile vomits after every feeding, because GERD.

Eventually, I had to leave the house for more than just an occasional trip to the library or bookstore, or the odd time I dragged myself to playgroup (or whatever it was called). Not my thing. I tried it because I thought it was something I was supposed to do as a good mom. Turns out I’d rather poke myself in the eye with a sharp stick than try to socialize and make small talk while sitting on play mats with random strangers, who I have nothing in common with besides a new baby. Thankfully, the kid seemed to feel the same way.

I had just gotten into the rhythm of this new existence, and it was time to go back to work. I would be teaching a new grade. Transitions and uncertainty are hard for Autistics. I know this now.

Other people’s kids all day. My kid all night.

Look, I love kids. Especially when they’re mine. Sure, they drive me bonkers on the regular, but kids are the coolest. I often get along with them better than adults. (When I was a kid, the opposite was true). So kids - cool, cool, cool. But also, alone time is essential to my mental and physical health. It comes with the autistic territory. Yeah, who knew?

With each new level of responsibility, and the piling on of life stressors, I had a harder and harder time keeping all the balls in the air.

I am the person who helps. Not the person who needs/asks for help.

Come on! Just try harder. Nobody wants to hear about your issues. If you do talk about them, make light, and make sure everyone knows you have it all figured out. No worries.

Business as usual. Nothing to see here.

Fast forward three years and a few more highs and lows. Baby number two arrived three weeks earlier than expected. She came in on her own terms, and that’s how she’s done everything since.

Did you know that two babies are twice as many as one? Also, newsflash – Kids don’t just adapt to your lifestyle. You’re the one who must adapt. I still sometimes chuckle and cringe at how much I thought I knew about parenting before I was actually a parent. Never mind parenting neurodivergent kids. Especially when you don’t know you’re all various flavours and combinations of neurodivergent.

A houseful of dysregulated neurodivergent humans who don’t know they’re dysregulated, is good, good times.

The change of routine, lack of sleep, scarcity of alone time, sensory overload, and general uncertainty and unpredictability of this stage of parenting, coupled with the ongoing bedlam of life, took all the bandwidth I had. (In case you’re wondering, yes, I’d do it all again in a heartbeat. I’d just prefer to know then what I know now).

Life began to unravel. Slowly at first. Maybe this was normal. Maybe everyone else was secretly having the same experience. Or maybe, this unravelling could be chalked up to the cumulation of all that had gone down over the last several years (and was far from over). It was the only plausible explanation I had at the time, so I clung to it.

I tried SO hard at momming and doing all the things. All the while secretly scratching my head as to why I dreaded going to school events, swimming lessons, and the like. Why I had no issue leading, giving presentations, monologuing on a particular subject, or even entertaining large groups (on my terms), but casual, unstructured socializing with colleagues at or after work, gave me the ick. Even when they were people I genuinely liked.

What is wrong with me? Try harder, would ya?

Trying harder involved voraciously searching for answers as to why I was the way I was, and why things were the way they were. I was on a quest to solve that mystery and hopefully, to fix my life once and for all.

Leaving no stone unturned, I dove deep into self-help, therapy, psychology, mindfulness, yoga, gratitude practice, journaling, meditation, breathwork, generational trauma, astrology, witchcraft, alternative medicine, and the dark realms of toxic positivity and new-age spirituality. Desperate times call for desperate measures. Some of these things were downright damaging. Others were of no consequence. A few offered solace, and still do.

In 2009, at around age 40, and despite my best efforts at manifesting (shudder) a more sustainable and less exhausting life, I experienced an extreme episode of (what I now understand as) autistic/neurodivergent burnout. Yes, it’s a thing.

I spent a year going to doctors appointments, having endless tests, and feeling like a terrible, useless parent, partner, and person. It was terrifying. Nobody understood. Many didn’t believe me.

I was denied benefits through my workplace’s insurance – who even sent a private investigator to spy on me. So gross. In the notes, the investigator wrote that he didn’t have much evidence because I never left the house. (Yeah, because I was sick, shithead)! My union didn’t really have my back. The whole process was demoralizing, dehumanizing and enraging, and drove me further into overwhelm and burnout.

Specialist visit after appointment after test, nothing of obvious medical consequence was revealing itself. I had a small thyroid nodule and a uterine fibroid, but according to doctors, neither was a “big deal.” Despite the very real physical symptoms I was having (exhaustion, weight loss, heart palpitations, changes in appetite and taste, shakes, digestive issues, weakness, sleep disturbances, loss of executive functioning skills) coupled with a complete lack of ability to play the role of a high-achieving, perfectly capable, productive member of society - no matter how much I wanted to - the unofficial conclusion was, it must be all in my head.

I knew it wasn’t.

Mainstream medicine was stumped. So, despite us not being able to afford it on account of being off work without pay, I started seeing a (licensed) naturopathic doctor. After thorough investigation, they suggested that aside from wonky hormones and over-taxed adrenals from the endless cortisol pumping through my system, I likely had fibromyalgia, a condition that medical doctors were very skeptical of at the time. It would take 14 more years to be officially diagnosed by a rheumatologist. I now know that fibromyalgia is among the many co-occurring conditions experienced by a lot of neurodivergent folks.

This lengthy and intense period of burnout changed my life forevermore. It led to me having to quit my teaching career in 2011. At the time, I acted like it was what I wanted. I told myself so, too. The truth was, that ever since ‘the big burnout’, I had frequently spent the 30-minute drive to work in tears, often blasting Annie Lenox’s “Walking on Broken Glass” on repeat the whole way. When I arrived at the school, I’d take a minute to pull myself together in the parking lot before heading in to greet my students and colleagues with a confident smile.

So you see, quitting was the only choice I had because staying wasn’t sustainable.

It’s all under control.  Don’t you even worry about it.

I went to work at a healthcare agency doing staff education, a job I had lined up before leaving my teaching gig. At first, it was welcome relief because I had a quiet shared office with a woman I seemed to vibe with, and I could go to the bathroom whenever I needed. What a novelty! 

The job lasted almost 4 years before I quit in 2015, for reasons which included but weren’t limited to, being moved to the overwhelm of a cubicle when the agency was expanding, and the slippery slope of burnout inflamed by some significant family drama.

For the next 7-ish years, I worked a few different jobs, and had several goes at self-employment. As you might imagine, not making a regular salary was having a negative financial impact. Money makes the world go round. Ugh.

I gave solopreneurship my all. Despite colossal effort, I was forking out more money in business-related costs, than I was making. This resulted in feeling like the world’s biggest loser and further contributed to the stress we were under.

My husband lost his job in the midst of all this, so both self-employed and/or on contract, it was boom or bust.

To say I was (and remain) between a rock and a hard place is an understatement. I knew I couldn’t go back to working full-time in a traditional job setting. Not wouldn’t. Couldn’t. In chronic burnout, pain and overwhelm, that nobody seemed to grasp the extent of, I knew without exaggeration, that heading back into the belly of the beast, would be the death of me. I still didn’t know why I was so shit at doing capitalism and normie-adult life, though. Which made everything exponentially worse.

Since life doesn’t stop just because you’re having a hard time, it went on. The kids, sheer stubbornness, a shred of fading optimism, and a vague sense of knowing deep down that this inability to cope with it all wasn’t simply because I was a garbage human, were my reasons for not ceasing to exist.

Brave face forward.  Crumbling underneath. Not everything is at is appears.

As I crossed the threshold to 50, my ever-decreasing capacity to meet the constant demands, curveballs, and complexities of life, resulted in more frequent meltdowns and shutdowns. The weight of things was unbearable. Burnout was my natural state. I was chronically overwhelmed. Increasingly hopeless. In constant pain. Perpetually exhausted. Tired of everyone’s shit.

I was angry at life, and full of grief. How could I try so hard my whole life only to end up here? It was a bitter pill to swallow. But swallow it, and continue to put one foot in front of the other, is what I did. (No amount of gratitude practice or looking on the bright side was/is the solution here, so don’t even).

Adding insult to injury, the hormonal storm of menopause pushed me to the brink.

Every day was an existential crisis. Everything was not fine. My mask was threadbare, and anyway, I no longer had the capacity to even keep it in place. I retreated. In survival mode. Surfacing rarely - mostly out of obligation and necessity.  Like E.T., I longed to be rescued by the mothership.

Enter a pandemic…

A few months into the first lockdown, through a series of events, and credit to some young folks (who have so much to teach us if we’re willing to listen with an open mind), autism became a topic of conversation in our house (which now included a third teenager who’d come to live with us for a spell).

As is my nature, I became curiouser and curiouser. Even though I had worked with many autistic kids as an educator and teacher, I began to realize that I had a limited understanding of the condition aside from the stereotypes presented in university classes, work-related trainings, and depicted in media. I had little to no experience or current knowledge regarding how it presented in teens and adults. Rain Man, Sheldon Cooper, and a couple of other autistic-coded characters where what I had (what we all had) for reference. 

Between raging at conspiracy theorists on the internet (which, it turns out is an effective way to get dopamine), and watching the world descend into chaos, I did some research and discovered that new information had surfaced since I last had cause to learn about autism. This new information seemed to challenge the narrow stereotypes of autism I’d learned about and that were still predominant in the mainstream – including in our education and medical systems. In some credible corners of the internet, the conversation around autism had been shifting, but I didn’t know this because I hadn’t been paying attention.

One day, in the fall of 2021, I happened upon a couple of YouTube videos where an Autistic (and ADHD) woman named Samantha Stein was talking about autism in a way that challenged stereotypes and assumptions, especially about how autism can present differently in women and girls. (Sidenote: More recently this is being referred to by many as an ‘internal presentation’, rather than the ‘female’ presentation of autism. I prefer this language, because gender is a construct). 

As I watched these videos, lightbulbs and buzzers and cannons were going off in my head.  “Wait. What?  This sounds awfully familiar. This is describing me!  How is this even possible?”

Further down the research rabbit hole I went, because it’s what Autistics do. Huh. Articles, books, academic papers, more YouTube videos, social media accounts, Facebook groups, and then… I came across Steve Silberman’s seminal book published in 2015, “Neurotribes: The Legacy of Autism and the Future of Neurodiversity.” 

Mind. Blown.

In Spring of 2022, I took some online tests through the Embrace Autism website. These are the same tests used in formal diagnostic assessments. Test after test, the results clearly indicated that there was a very high likelihood I’m Autistic.

Deep breaths.

I knew this was the missing piece. The explanation that I’d been searching for my whole life. But imposter syndrome, and self-doubt, and the fear of other people’s opinions, made me want validation from a qualified professional. I needed a formal assessment. A privilege I recognize is denied to many. (Lack of access to formal assessment by qualified clinicians, is one of the reasons that at this point in history, self-identification is widely accepted in/by the Autistic and ADHD community).

I started talking more publicly on social media about my experience. Somehow, in May 2022, I was invited to be a guest on CBC’s national radio program, ‘The Current’ with Matt Galloway. The episode was titled, “Changing the stigma around autism diagnosis for adults.”

In June of 2022, after saving up a bit of cash to pay for a private assessment, and doing a lot of research to find a qualified clinician who was armed with current knowledge about autism in adults (particularly those assigned female at birth), I started the formal diagnostic process.

Later that summer, I was fortunate to be offered a temporary part time work contract with an agency full of accepting and compassionate people, most of whom spoke the language of Neurodivergence (whether they were aware of it or not).

A whole year later, after completing almost 20 standardized diagnostic tests, submitting about 30 pages of paperwork, and having a final clinical interview, in July of 2023 (just a month after being formally diagnosed with fibromyalgia and a sprinkle of osteoarthritis), my suspicions were confirmed. I was diagnosed Autistic (without accompanying intellectual or language impairment).

Among many other things, the lengthy clinical report I received states, and I quote -
“Social Communication Level 1—Requiring support”
“Restricted Interests & Repetitive Behaviors Level 1—Requiring support”  

“REQUIRING SUPPORT.”

Support that I (and so many others) never received because nobody knew or believed I (we) needed it. Turns out I wasn’t just a shit at coping (but great at pretending I was) human, after all. Rather, I had been moving through life (54 years of it by then), on a wing and a prayer, and a totally different operating system than the majority. The implications of that still haven’t sunk in.

The assessment process included screening for a few other things. I was also diagnosed ADHD (primarily inattentive presentation of moderate severity), as well as Unspecified Trauma and Other Stressor Related Disorder (C-PTSD). The lengthy written report I received lays out in detail how I meet the DSM-5 criteria for all these conditions. Prior to 2013, it was thought that a person couldn’t be both Autistic and ADHD. We now know that’s complete bullocks and that these conditions often (not always) occur in tandem.

At the time of this writing, it’s been almost a year since I got the official news. It was and remains a whole lot to process. There’s a roller coaster of emotions that go along with suddenly and finally finding out who you really are, after 50+ years of feeling like you’ve landed on the wrong planet. 

Relief, validation, anger, sadness, amazement, resentment, grief. Soooo much grief.

The ‘what ifs’ and ‘if only I had knowns’ happened daily at first. Sometimes, they still do. After a lifetime of pushing an invisible boulder up a hill every minute of the day, I’m not sure the chronic burnout is reversable, and that makes me sad. Although, the menopause hormone therapy I was prescribed a few months ago has helped to clear some of the cobwebs.

The good news is, there’s something incredibly life-affirming about finally being seen and validated after decades of, well, the opposite of that.

The bad news is, you don't necessarily get that validation from some of the folks you need it from the most.

Still, I’m learning to be grateful for better late than never. I’m learning to get to know myself (and my neurodivergent kids and husband) all over again. It’s an adventure. A whole new reality to embrace. A lot of learning and unlearning.

There is both radical acceptance of this late-in-life revelation, and indignation at how long it took to discover, at how many people have a similar story to me, and at how many still don’t know, or never did. (As far as science currently knows, neurodivergence is largely genetic).

I constantly must remind myself that had I been discovered/diagnosed as a kid, I likely would’ve been institutionalized or subjected to torturous treatments – because that’s where we were with these things back then (and in some ways and places, still are).

And those supports my clinical report says I require? They’re basically non-existent for people like me (with lower support needs). They barely exist for people with much higher support needs. Which is, frankly, unacceptable.

Thus far, the greatest source of support I’ve found has been in the form of connections with other neurokin, mostly online. People who get it, and/or who don’t dismiss, ignore, minimize or invalidate your lived experience, are good medicine.

The landscape and dialogue around Autism, ADHD and Neurodivergence is changing slowly but surely. Countries like Australia and the UK (where incidentally, the politically and financially influential, and controversial organization, Autism Speaks, doesn’t have a stronghold) are leading the charge. There are pockets of people and movements trying to raise the bar elsewhere too.

In Canada, where I live, we’re lagging, but gradually picking up steam. The government is moving forward with the National Autism Strategy – which has mixed reviews (at best) among the autistic community here. Unfortunately, Autism Speaks is a major player, and Applied Behaviour Analysis remains the only publicly funded therapy, and the one that is most often recommended by medical professionals and used in educational settings - even though we now know its dark, unethical history, and the lack of valid and reliable scientific evidence supporting its efficacy. (That information is readily available, should you choose to seek it).

Misinformation, misunderstanding and stereotypes are entrenched in our systems, governments, organizations, and culture. It’s time to challenge outdated knowledge, practices and assumptions, and therefore, the status quo. In the process, we must be careful and discerning about where we get our information and what ‘experts’ we listen to. Critical thinking is essential in this, and every regard.

Above all, we must be willing to have uncomfortable conversations. There is no shame in admitting we were previously coming from a less informed place. Only by acknowledging our mistakes, missteps and blind spots, can we move forward. Otherwise, we stay mired in the blunders of the past, and nobody wins.

Autistic, ADHD and otherwise Neurodivergent people are (a mostly invisible) minority, but we are everywhere. We always have been.

“Nothing about us, without us,” has become a sort of battle cry of the neurodivergent community. We must be at the forefront of research, policies and systems that impact us. For far too long, neurodivergent folks, especially those with intersecting marginalized identities (queer, black, indigenous, non-speaking, otherwise disabled, etc.) have been dismissed, invalidated, and worse. We’ve been told who we are, what we are and aren’t capable of, and what we should be able to tolerate, by people who don’t know a damn thing about what it’s like to navigate a world not designed for you. A world that is often hostile to anything and anyone deemed different by “normal” (neurotypical) standards. So many of us have been denied the truth of our identities – which is why we feel so alien in this world. We’ve been made to feel broken, when the reality is, it’s society that’s broken, not us.

Ableism (including the internalized kind) is an epidemic that must be eradicated.

It’s hard (impossible) to thrive when you’re struggling to survive. There is still much work to be done before we live in a world that allows neurodivergent people to not just survive to a ripe old age (current stats on this are disheartening), but to actually thrive. This is (should be) the inherent right of every human on earth.

Like I’ve already said, we don’t know what we don’t know. That’s valid. However, we now have access to an ever-growing body of updated, reputable and reliable information, knowledge and research, so we’re running out of excuses not to know better. This isn’t the time for defensiveness, blame shifting, incredulity, gatekeeping, or burying heads in the sand. This is the time to make every effort to do better so that Autistic, ADHD, and otherwise Neurodivergent children and adults of the future can reach their full potential, and don’t have to struggle like so many of us have.

P.S. Feel free to leave me questions, feedback, or to share your own experience in the comments. Also, if there’s a topic you’d like to see me write/share about, leave your suggestion in the comments, or send me an email.