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This is the 16th interview in my series Interviewing Late-Identified Autistics. Liz Hunt is a late-identified autistic. My questions are in bold and Liz's responses follow in regular typeface.
What is your preferred name and pronouns?
Liz Hunt (she/her)
How old were you when you learned you were autistic?
I discovered I was autistic at the beginning of 2022 when I was 50.
How did you learn you are autistic?
I suspected a couple times in the past that I could be autistic. On those occasions in my 30s and 40s, when I asked my former therapist and/or my mom, they both unequivocally told me it wasn’t possible because I was too “high-functioning” — I made eye contact, navigated small talk, had several long-lasting friendships (including a few from college), and worked full-time in a demanding role.
The extreme isolation I experienced during the pandemic brought my autism to the forefront and broke my ability to mask. A pivotal experience led to my discovery.
Last December, while being interviewed for a high-profile podcast, I had what I would later come to believe was an isolated dissociative episode (twenty minutes of the hour-long interview were a complete blank, though bizarrely I could remember the exact times the memory gap started and ended plus what it felt like to fizz out then back in). It was the first and only time I’d ever experienced anything like that, and it was abjectly terrifying. For a month or so afterwards, I sporadically had extremely vivid flashes of mortifying snippets of conversation. The flashes disrupted my ability to work and woke me up several times a night. Each flash left me feeling off-the-charts anxious that I’d said something inappropriate. I finally reached out to the interviewer to ask if I could review the recording before it went live. As it turns out, my fears were unfounded — it was one of the best interviews I’ve ever done. I was eloquent and a bit more open and vulnerable than I would normally be, but in (what my friend who watched it with me agreed was) a charming and effective way. Unfortunately, it’ll likely never be heard. In what I’ve since learned is a common autistic behavior called oversharing, I explained why I was asking to review the recording. Afterwards I emailed the interviewer saying our conversation was lovely, I had no idea why I had had the reaction I did, and I was looking forward to it being shared with their audience. They thanked me for letting them know, then faded away (and never responded to the follow-up email I sent a few months later). It’s a shame, my interview would have been a fantastic addition to their podcast.
The day after that interview, I read a book called ‘Complex PTSD: From Surviving To Thriving’. C-PTSD felt like a contributing factor to what I experienced, but not its primary or root cause. My internet research soon uncovered a few articles about women diagnosed later in life as autistic (who not so coincidentally had C-PTSD after decades of traumas). That led to many more articles and websites. A week or so later, once I felt certain I was on the right track, I read three books about how autism presents in people who aren’t white boys/men (‘Odd Girl Out’, ‘I Think I Might Be Autistic’, and ‘Spectrum Women’). The second book gave me the intellectual confidence to form the hypotheses that I was autistic and autistic burnout was the reason I’d had that isolated dissociative episode. A chapter in the last book, by ARtemisia, cinched them for me on an emotional level. ARtemisia wrote about young girls feeling like “computers perched upon a set of shoulders”. When I read that phrase, I immediately and unexpectedly burst into tears. I'd never told anyone about the innumerable patterns, algorithms, and filters I've been using and iteratively refining since I was a child. Nor that I’ve always believed myself to be an alien anthropologist in a human body with a bio-computer-augmented mind whose mission is to understand humanity and have as many (and as varied) human experiences as possible. I bawled. Afterwards, for the first time in my entire life, I could breathe soon after crying (a truly wondrous ability that I took as a sign of rightness). It’s also been a gift for which I’m eternally grateful, as this journey has been filled with so very many tears.
That was how it began. I’ve spent the last 10+ months geeking out on it all. Despite my best efforts, I was unable to disprove my hypotheses (nothing else fit more than a few things about me and my life, let alone all of them). Everything I’ve learned since has only reinforced my conviction that I’m autistic.
How did you decide whether to self-identify or diagnose?
I’m self-identified. At the moment, thanks to the inclusive nature of the autistic community, I don’t feel a pressing need to get formally diagnosed. That’s super convenient since all the waiting lists I put myself on when I first formed my hypotheses were for appointments in 2023. A formal diagnosis would cost me $2,500-$5,000 (plus travel and hotel expenses depending on its location). If I were to change my mind, and decide to get assessed, I’d likely have to pull that money out of my retirement account (at a time when inflation is rising fast and another great-recession looms). And for what? A piece of paper to wave at the neurotypical people in my life who don’t believe me? At my age, and with my level of autism, a formal diagnosis isn’t going to grant me any benefits. It won’t include any therapy or support products/services. It won’t qualify me for any governmental assistance or disability programs.
Sometimes I worry I might be mistaken — that maybe I’m not actually autistic — but then I remind myself what my most recent therapist told me. They’re autistic and specialize in supporting late-identified and late-diagnosed autistics (though they themselves don’t do formal assessments or diagnoses). They said that, for what it’s worth, they don’t have any doubts I’m autistic. On days when I need something more to calm my worry, I remind myself that if I weren’t autistic the autism management techniques they taught me wouldn’t be anywhere near as effective and beneficial as they are. It’s wild how well those techniques work. I wish I had known about them decades ago.
What is your gender? How do you feel this impacted your journey as an autistic individual?
I’m female (assigned female at birth and identify as female). That said, it’s only this-me that’s a short blonde woman. From my earliest memories, I knew that whoever/whatever I really was didn’t always look like this and that this body was for this particular instance of me. I’ve grown less uncomfortable over the decades seeing this-me in the mirror or in photos/videos (annoyingly, not long after I became relatively comfortable, the effects of aging began making it difficult again). When I dream, I’m sometimes this-me. The rest of the time, however, I’m other-mes or experiencing the perspective of a wide variety of other people/entities. I don’t understand the whys or hows of it, I just know that I am and/or have been a spectrum of different genders and no-gender as well as human and a variety of non-humans. Dreaming is often fascinating, enriching, and rejuvenating. I believe it’s the foundation of and power behind my openness and passion for diversity, inclusion, equity, and justice.
How did your friends and family respond when you told them you are autistic?
It’s been a mixed bag. Most of the family and friends I’ve told have been receptive, but so far only a few friends have been supportive in the way(s) I need.
In March, a few months after my realization, I texted a succinct summary of my reasoning to my mom. Just in case, I’d also prepared a list of supporting references. My mom was the first family member I told, and I thought she’d be much harder to convince than my brother since her career had been in special education. Her affirmation later that day made me immediately and unexpectedly burst into tears of relief. She replied that, after she learned about aspergers in the mid-1990s, she’d often thought and told others I had some of its characteristics. Specifically, she said I’d always had a “sensitivity to textures and foods, a low sense of humor and social skills (taking everything so seriously and literally), a tendency to run from problems, and issues playing the game in my professional life”.
Unfortunately, not long afterwards, she changed her mind. I’m not sure why. In our most recent conversation, my mom reiterated that she still doesn’t believe I’m autistic. She also said (with perhaps what was supposed to be humor, as it was delivered in the style of the movie Jerry Maguire) “show me the assessment”. I was not amused.
Your Past
How did being an undiagnosed autistic child impact your childhood?
I don’t have much of an autobiographical memory, but based on what I’ve been told and remember, autism greatly impacted me during my childhood and adolescence.
My mom always said I was a spontaneous or self-taught reader. I recall hearing stories about how, before I started kindergarten, both sets of grandparents would be amazed by how well I read. When I was in second grade, I was assessed and then offered an opportunity to advance a few grade levels. I wasn’t comfortable in the new class, so instead the school augmented my education by sending me to the basement to learn how to speed read (on some sort of black clicking machine which might have been an EDL Words Per Minute Controlled Reader).
A few years later, when I was about to start seventh grade, our family moved to a school district in Florida that had a “gifted and talented” program. To qualify, I had to take another assessment. Its report described me in a way that sounds autistic to me (at least given what’s now known about the full spectrum of autism). That junior high is where I was epically bullied (via verbal, emotional, and physical abuse as well as ostracism). Initially by my nemesis and her clique, then soon by literally everyone in the school, and for years without respite. I’ve blocked out most of the details, but the memories I do have rival mean girl movies. The only friends I was eventually able to make were from my extracurricular synchronized swimming team (almost all of whom went to different schools).
Thankfully, when I was about to start tenth grade, we moved to Texas. I applied everything I’d learned and continued to iteratively improve my social skills. Other than a few notable exceptions in the decades since, I’ve been able to keep myself solidly in the upper half of the social pecking order.
How did being an undiagnosed autistic impact romantic relationships?
Undiagnosed autism had a tremendously negative impact on my romantic relationships. I was a bit of a late bloomer. I went on the occasional date in high school, but didn’t lose my virginity or have a serious romantic relationship until my second and third years of college respectively. That’s ancient by today’s standards, but in the late 80s and early 90s was just a bit behind the bell curve. Even after all these years, unless a person’s words and/or actions are clearly flirtatious, I’ll most likely miss (what to neurotypicals are apparently obvious) signals of romantic interest.
Like way too many other autistics, I’m a survivor of way too many instances of emotional and sexual manipulation, abuse, and assault (including a few years’ worth by one of my intimate partners). Though I’ve always had a strong gut instinct and successfully avoided the more obvious dangers, it can take me longer than a neurotypical to get a read on an ambiguous person or situation. Over the
decades, after much trial and error plus a lot of therapy, I finally learned how to quickly identify and avoid master manipulators. I’ve also worked really hard to develop an ability to sense a person’s energy (it might not be as fast as whatever neurotypicals do, but now I only need an interaction or two to figure out their intentions).
I’ve never enjoyed the psychological games neurotypicals so often play, and I absolutely abhor the ones that seemingly must be played to date. Though I’d love to have a partner to share my life with, I'd much rather remain single than invest even a tenth of the amount of time and effort it would take to wrangle online dating apps and the hookup culture.
Your Current Life
Is there anyone else in your family who is autistic?
I don’t know, I’m adopted. My adoption is still closed (I was born at a time in a state that still forbids access to my original birth certificate). In my early 30s, I petitioned the adoption agency for more information and eventually met an aunt on my biological-mother’s side. She told me several of my relatives on that side were neurodivergent (a couple folks like me had been diagnosed with narcolepsy and a few others with ADHD). Autism was never mentioned. Both my biological-parents were older at the time of my birth (late 30s for my mother and late 30s to 50s for my father). My biological-parents and maternal half-brother died years before I began my search. Not much was known about my biological-father’s side, and I wasn’t able to find any additional information.
How have you modified or adapted your life since learning you’re autistic?
I’ve developed and refined dozens of coping mechanisms and life hacks over the decades. Today I cherish each and every one of them more than I ever have.
About six months after my realization, as mentioned above, I spoke with a new therapist. Over a dozen or so sessions, they shared several techniques they’d found and heard to be effective, then encouraged me to experiment.
I had no idea that putting on noise canceling headphones and allowing myself to flick my fingers would be so tremendously calming. Those two things can even stop a nascent meltdown. Giving myself permission to limit my obligations, encouraging myself to take more time for recovery (which isn’t just rest but also includes immersing myself in one of my flow activities), and beginning to envision an atypical future for myself have me feeling better in some moments than I have in years.
It’s only been a few months, so I’m very much in the early stages of experimenting and envisioning. Most moments are still quite rough.
In what ways does being autistic enhance your life?
I love the unique way I perceive the world and think. Though my life has been filled with more than my fair share of traumas, it’s also been a grand adventure. I wouldn’t be me if I wasn’t autistic, and I like me just the way I am. Despite how disabling autism is in our society and thus to my life, I wouldn’t ever want to get rid of it. Instead, I’m using it as a new source of inspiration.
Connecting With You
If someone would like to connect with you, how can they reach you?
I can be found on most of the usual channels, but perhaps most easily via my firstname at the domain below.
Do you have any works, websites, or other creative ventures you would like to share with others? (please provide links)
For more information about the human-centered innovation consultancy I co-founded, visit https://www.smithassembly.com.
If you’d like to think about Justice, Equity, Diversity, and Inclusion (JEDI) in a different way, check out our online course at https://smithassembly.thinkific.com/courses/inclusion-training-workshop-oax.
I have an idea for how to strengthen understanding of and compassion for autistic people of all kinds. It's a way for autistics to see or share their unique autism profile, and a way for neurotypicals to learn more about how autistics experience the world. I recently began collaborating on a proof-of-concept with someone, and we've decided to gather together a small collective of other #actuallyautistic people to co-create it with us. If you're autistic, we'd love to chat with you about it — to hear your feedback and see if you might be interested in joining us. Check out our Idea Brief!
Thank you for reading. It's my goal to reach 100 interviews. If you are a late-identified autistic, I would love for you to participate in this series. Please email me at jackieschuldart@gmail.com if you are interested.