Should I Get An Autism Assessment?
I’m different. I’ve always known that. I used to put that down to my unusual upbringing and parents. Nurture rather than nature. I don’t think it’s ever that simple.
When I was 19 someone told me about Asperger’s syndrome. Specifically in relation to me. I’d never heard of it. The person had seen me a few times in a work setting and something about my behaviour had compelled them to talk to me about Asperger’s.
I looked into it. Everything I read resonated but I had no idea what to do about it. So I promptly forgot about it. It came up again a few times during my twenties, people would mention Asperger’s or autism. I also had long periods of being withdrawn from society, which in itself was a sign.
These are the symptoms, characteristics or behaviours people were observing or commenting on:
- Problems making or maintaining eye contact.
- Awkward in social situations, out of sync with others.
- Missing or misreading social cues and body language.
- Showing little emotion, speaking in a flat monotone.
- Talking incessantly about a topic I am engrossed without regard to listener’s interest or lack of.
- Repetition of phrases and movements.
- Twitching, rocking back forth and other movements.
- Strictly sticking to routine and easily upset when routine is changed.
- Highly sensitive.
- Obsessive focus on narrow topics.
- Strong verbal skills and large vocabulary.
Now that’s textbook Asperger’s. It also describes me quite well. Or rather how I was, or came across, until my early thirties. Some who’ve known me in the last decade or so have remarked “you can’t be autistic, you’re a social butterfly!” Yes, I’ll get to that in a bit.
A point on terminology, Asperger syndrome in more recent years has been merged into autism spectrum disorder (ASD) alongside other related disorders. From here on out I’ll just use “autism.”
There’s been a big drop in people mentioning Asperger’s or autism to me over the last decade or so. Gradually from my mid twenties onwards. That’s because I got very good at being “normal.”
I didn’t know what “autistic masking” was until a couple of years ago, but that’s what I’ve been doing most of my life. Trying to blend in, appear normal. Many remarked how changed I was after I came back from a few months around Europe when I was 22. Yes, I’d used hostels as a low risk way to fast track my social skills. Moving to a new city each week was a reset. And after a few months I’d become quite good at telling stories, modulating my voice, putting in pauses and emulating how “normal people” talk. In contrast to my childhood and teens when I would speak fast and without pausing, to which someone once shouted “BREATHE!” While on the road I also learned what the requisite amount of eye contact was, how to gesticulate for emphasis, and started mimicking interesting people people I’d met. I did a lot of mirroring too.
Over the years my ability to perform improved. And it is a performance. It requires energy. But the social anxiety and awkwardness never left me, I just learned how to cope with it and hide it from others. The problem is that unless you give yourself enough breaks and are able to feel safe and comfortable to be yourself it will inevitably lead to burnout. The performance takes a toll. “Autistic burnout” is a thing and it goes hand in hand with autistic masking. And I’ve definitely been there. Many times. Months or years of withdrawal from society. No energy, depression, and suicidal thoughts from just being drained rather than any specific issue or pain.
Of course it’s not as simple as that, there have been other factors which have caused me mental health issues, including childhood trauma and just plain regular burnout from unsustainable levels of focus and intensity… which is actually another autistic trait.
Even when I’ve been performing it wasn’t forced if I was rested, engaged and stimulated. I like being social. I just enjoy it for different reasons to other “naturally” social people. Like any activity, when in a state of flow I’m practising a set of skills and enjoy the challenges. So I can come across as a “social butterfly” and have even been described as “bubbly.” But I am more scripted and controlled than others in what I say and how I respond. I’m also not entirely confident in knowing if I’m responding appropriately due to difficulties in picking up on body language and other social cues. So I concentrate on being a storyteller but can end up monopolising a conversation if I am not careful or it’s not pointed out to me. Sort of “high-functioning” to a point.
As for other behaviours, the signs have always been there. Around the age of 10 I’d insist on reciting all the Doctor Who serials in order from 1963 to 1989 — not aware that the person I’m speaking to has no interest (I still remember the names of the first and last serial for each of the seven Doctors from that era). Much the same for other topics. Unusually intense and obsessive fascination with anything I turned my attention to with lots of memorisation and repetition.
Taking apart old video cassette recorders and other electronics. Tinkering with an old hand-me-down computer and learning to code. Drawing. Reading. Making my own toys out of cardboard from cereal boxes. All of this for hours at a time without moving or saying a word. Especially at night. Night time was quiet with no noise or people distractions. Many of my secondary school days were spent in bed sleeping because I’d stayed up all night. I was almost entirely inward focused.
It’s difficult to cover the range and intensity of hobbies and interests over that period. Later years too, staying out on cold November nights with a telescope cataloguing stars. Building a makeshift home darkroom and developing and printing photos while depriving my mother and sister the use of the bathroom for those hours (luckily separate toilet). Or baking bread daily obsessively for months. Single-minded focus to the exclusion of everything and everyone else and a nonexistent social life.
I’ve always twitched, tapped my foot, shaken my leg and rocked back and forth. I still do it but am aware enough to control myself around other people. Unless I’m tired, stressed or agitated. A senior civil servant several years ago had to point out “you’re rocking back and forth” during a meeting between two government departments. Oops.
As for routines, I get unreasonably upset or even dysregulated if it’s a run day and I can’t go for a run. Or if I’d planned to do laundry and now suddenly can’t, especially since I’ve been travelling over the last 18 months. I stick to rigid routines and find it hard to see alternatives. I plan obsessively around my routines and can get upset if I can’t satisfy them.
Emotions are tricky. I have a great deal of empathy but find it difficult to sync up with other people’s emotional states in real-time, finding it difficult to respond in the moment. Which is usually not evident outwardly because I’ve had time to study and understand what the acceptable responses ought to be. It takes some time and reflection for me to understand what someone may have really meant or felt. This has been particularly difficult in close relationships.
At one point I had a near photographic memory. Working in a camera shop (no pun intended) in my late teens/early twenties I would regularly surprise colleagues by remembering the seven digit invoice number on a receipt from a sale the week before, having glanced at it once and it being one of hundreds of sales I would have put through. Sadly, while I still have great retention and recall, I am no longer able to do this.
While I’ve appeared to live a more balanced life over the last decade this has not really been the case. The intense focus and obsession remains. It has just shifted to areas around the work I’ve been involved in. Whether it’s cramming the equivalent of an MBA into my brain over the period of a month in order to deal with nonsense acronyms being thrown around by big consultancy types or spending hours on a Sunday writing strategy papers nobody asked for. One Christmas Eve I wrote four papers which were still being debated years after I’d left the organisation.
There have been cracks. Some intentional. Those close to me get to see more of how I really am. Hiking with an ex partner a few years ago who asked to know a little backstory to Aragorn, one of the central characters in The Lord of the Rings. Without noticing, I talked for an hour and covered the bulk of the mythology in The Silmarillion and then moved on to naming the kings of Numenor before I was gently told to stop. That sort of thing was much more common when I was child.
With all this in mind, and based on the recommendation of my therapist at the time, I decided to get a referral for an autism assessment in 2021. I joined a waiting list but after 12 months still didn’t have an appointment. They couldn’t give me an estimate of how much longer it would take. It wouldn’t matter in any case, I’d left my job months before and was about to leave the country and embark on an open ended trip around the world. The assessment couldn’t be done remotely and I didn’t know when or if I would return, so I had myself removed from the list.
While on the road I made many friends. Including those on the spectrum themselves. From them no amount of being “bubbly” could hide that I was likely somewhere on the spectrum too. One friend shortly after meeting me said they had a “moral imperative” to tell me “you’re one of us.” I was also told “you’re not just autistic, you’re autistic as fuck” — as something to be proud of.
Months later while I was playing with the idea of settling in Melbourne, I made a friend via a Meetup group discussion (non autism related). We picked up on each other’s cues pretty quickly and not only were they on the spectrum, they also ran a sizeable online community for autism awareness and support.
These people were able to quickly identify me because of their increased awareness and experience in the autism field. But it might also have been because I was finally dropping the mask a little. Letting myself relax. Lean back into who I naturally was. Letting myself be weird. I’d been masking extra hard for a few years, the work environments I’d put myself in were not safe spaces for someone as different as me. Especially working closely with executives in highly hierarchical and bureaucratic settings. As much as those places talk about neurodivergence and inclusion, at the higher levels personal interest trumps everything and anything that can be used against you will be used against you. Which was tough, especially with my limitations around social cues and body language. Once my initial enthusiasm faded I realised I was around people I found deeply terrifying. I’d put myself in a shark tank. Then I left and moved to another shark tank and tried to be a shark myself for a while (a little one). I didn’t like it. Also, a bigger shark ate me.
But now I was freer. As free as anyone could be. So I hung out with my new Melbourne friend and they recommended a book that had been transformative for them. A memoir they’d seen themselves in. Look Me in the Eye: My Life with Asperger’s by John Elder Robison.
Six months after the recommendation I finally decided to read the book too. Within 20 pages I thought “this is me.” By the end of the book I found the parallels to my own experiences and thought processes uncanny. Aside from specific events and people, this was my book, I could have written it — and I’ve been trying to write my own book for the last 18 months! Even the writing style spoke to me. It’s as if the author was speaking directly to me in words and sentences I could understand. Everything except the happy ending. I’m not there yet.
I highly recommend the book to anyone, a well told tale of a well lived life with some genuinely funny and touching anecdotes. It’s also a great window into the world of autism.
So after all that, I’m back to “should I get an autism assessment?”
I’m still not settled. 18 months into being technically homeless and unemployed. But not destitute. I have means. I could pay for an assessment. What would that give me beyond what I already have through my own research and connections? Confirmation? Certainty?
Or did I diagnose myself in this post? No, I’m not a doctor… speaking of which, The War Games is a fantastic 10 part serial ending Patrick Troughton’s run as the Doctor and leading into Spearhead from Space with Jon Pertwee. The first serial in colour!
Or maybe I’m not autistic after all. Maybe I’m just a weirdo. I can live with that too. Already have. 43 years and counting.
PS. Actually been rocking back and forth while finishing this post.
