Learning that you’re autistic as an adult: Big feelings
By: Ruby Susan Mountford
Have you ever seen a bird fly into a window? They don’t try to slow down or brace for impact, because as far as the bird is concerned, there’s nothing there – until there is.
My window, my invisible wall, is a grimace of annoyance, an exasperated sigh, an awkward silence after I speak.
A sudden, crunching realisation that I’ve made a terrible mistake.
A sickening swoop in my stomach.
A thud against glass.
Image by Cynthia Sobraty
Have you ever wondered if you’re autistic?
It’s a big question, isn’t it?
The first time someone asked me if I’d ever wondered if I was autistic, I was 25. It was 2015, and I was sitting in a comfortable armchair across from my psychologist of almost three years. I’ve never been skilled at masking my emotions (a trait, as it turns out) and distress was undoubtedly written all over my face in black sharpie, because she gave me a soothing smile, suggested I do some reading, and promised we could talk about it when I was ready.
It’s a big question, and in my experience it can lead to some very Big Feelings. The exact make-up of these Big Feelings is different for every person, but it’s a bit like those fancy perfume shops where you mix your own scent: the end result is uniquely yours, but it’s a combination of ingredients that everyone has access to.
My Big Feelings involved a tangy mixture of surprise, mortification and anger. To break it – me – down further, my Big Feelings could be summed up as how dare you and I’ve done something to make you think that, I’m so ashamed.
Ah, shame. The great ambition-killer, destroyer of dreams. There’s a lot of shame in this story – it’s about growing up, after all. I have an intimate relationship with my shame. There had been plenty of it soaking the 20 years or so leading up to this therapy session.
At that moment, with that big question, my shame sat in my throat like a sharp-edged stone. Now, before I go any further, let me make something clear: being diagnosed as an autistic person was the best thing that has ever happened to me.
It just didn’t feel like it at the time.
One of the truly wild things about getting an autistic diagnosis as an adult is that no matter how different you feel afterwards, nothing about you has actually changed. I didn’t transform into another person in that psychologist’s office. There was no metamorphosis, no shedding of my shame-skin within those pastel walls. I didn’t emerge all bright and shining with autistic pride and a rad queer haircut. That took time. Takes time.
But it was something new, a different lens to see my life through. Not just that moment, but all the years leading up to it, the memories I loathed and feared. The old, buried wounds.
Being undiagnosed had been a heck of a lot like trying to assemble flat-pack furniture using the wrong instruction manual. My pieces looked a lot like everyone else’s, but it was taking me so much longer, and I just couldn’t understand why it wasn’t working; I was following everyone else, copying what they were doing, we all had the same tools, so why didn’t my pieces fit together in the right way?
And then, 25 years into this struggle, someone gave me the right instruction manual and I could finally understand why it wasn’t working, how all the pieces could fit together. It wasn’t a desk, it was a cabinet.
The flat-pack furniture is my life.
Chances are, you didn’t need me to include that last line. Maybe my metaphor is clear, and you are canny enough to arrive at this conclusion on your own. It might feel strange – even patronising – for me to spell it out, but you see, after a lifetime of missed and misinterpreted social cues, I can never safely trust that my meaning is understood.
On the drive home from therapy, I tried to untangle my Big Feelings. It was a good drive for that sort of thing, about 30 minutes straight down the Eastern Freeway. Long enough to contemplate but not so long that I could stew or spiral, and no tricky intersections or traffic lights.
By the time I parked the car at home, I had decided two things: firstly, that I would google autism diagnosis in adults, and secondly, that I was not going to tell Mum and Dad or anyone else about what my psychologist had said. (If you squint, this is a coming out story.)
Autism is medically defined as significant difficulties in social interaction and nonverbal communication, along with restricted and repetitive patterns of behaviour and interests. The emphasis is on what people can observe about us, not on what we experience.
One of my mum’s closest friends has an autistic daughter, the first autistic person I ever met.
She’s younger than me, and is what people refer to as a ‘low-functioning’ autistic person. I don’t particularly like the high/low functioning labels – functioning makes us sound like engines, like machines in a factory, only getting attention if we’re doing something wrong.
My autism is what the Diagnostic and Statistical Manual of Mental Disorders would have called Asperger’s syndrome, but Asperger’s syndrome was retired as an official diagnostics category in 2013 because of inconsistencies in the diagnostic criteria.
People feel more comfortable with terms like Asperger’s or Aspie. To much of the world, Asperger’s is a quirky nerd, a Manic Pixie Dream Girl. It’s Geek Syndrome – weird, but in a non-threatening way. It means a job, maybe. Normalcy, or something closely adjacent.
For many, the word ‘autism’ is a life sentence.
It makes a lot of sense to me that people had a hard time trying to figure out where autism ended and Asperger’s began – the separation had started because of professional concern that autistic people with high support needs were sharing a label with people who were ‘quirky’.
Basically, doctors wanted to draw a line between high- and low-functioning autism, and they couldn’t agree where that line should be because autism is as complicated as culturally dependent social etiquette, as unique as mix-your-own perfume.
Here’s why it should have been taken out of use: the Austrian doctor Hans Asperger, from which the name comes, was a eugenicist who worked closely with the Nazi Party and sent children with disabilities to be experimented on as part of the Nazi Party’s scientific programs. He wrote about how there were autistic people that were “almost” human and drew a line between them and the rest, and so in the ’80s some paternalistic fuckheads in lab coats read his research and decided to name us all after a man who had no qualms about having us killed if we couldn’t be useful enough, if we weren’t functioning well enough.
Back when I relied on that retired distinction between different kinds of autism, I often felt the need to add “but I’m high-functioning” when I came out as autistic. In doing so, I was making an unspoken commitment to keep functioning, to be productive enough, useful enough to make up for my deficits and my Big Feelings. I was telling myself, and everyone else, that I didn’t need help, that I could tough it out and keep up, that I could overcome the problems, that I could overcome myself.
Autistic lives are still not considered as valuable. In the response to the COVID-19 pandemic, the UK’s National Institute for Health and Care Excellence (NICE) advised the National Health Service (NHS) to deny treatment to patients with intellectual disabilities and autism if the NHS became overwhelmed with coronavirus cases by conflating ‘frailty’ with having support needs.
They revised these guidelines after disability advocates spoke up, but a number of GPs had already informed autistic and cognitively disabled people to set up a Do Not Resuscitate plan if they became sick. Here in Australia, our families and advocates had to resort to calling the police when some disability care providers stopped people with disabilities living in group homes from going out to exercise, work or see health professionals.
People tell me that I don’t sound autistic, don’t look autistic. I used to take that as the compliment it was intended to be. It felt safer. It meant I was passing. I’m not a fan of the term ‘passing’. It’s an active word, but passing is often not an act at all: it’s the consequence of other people actively projecting their assumptions onto you. It’s erasure without thought, and it sucks.
When I’ve walked down the street with a guy, many people have assumed we are a straight, cisgender couple, because social narratives make no room for bisexuality and non-binary gender identities.
I may be misgendered (often) but I look like a cis woman, and while that comes with its own dangers, it is absolutely safer to be cis than be clocked as a trans person.
People’s assumptions and their subconscious erasure might keep me safe from queerphobic bigots on the street, but there’s more to heterosexism, isn’t there? There’s all those internal Big Feelings: the guilt (what I’m doing is wrong) and the shame (who I am is wrong) that starts soaking through your skin in childhood and stays, stains.
Growing up was not a great experience for me. Even writing this, it takes a conscious effort to regulate the emotional responses that flood my brain, to sit with my Big Feelings for long enough to understand them, move through them, and consider how they are impacting how I perceive things.
I enjoyed the learning aspect of school, though I found it difficult to concentrate on topics that did not immediately engage me, and in classes where I couldn’t talk through knotty problems to untangle them. I liked singing in choirs and talking about theatre and history and books and the human mind. But for as long as I can remember, I had a hard time making friends.
Like a lot of autistic kids, diagnosed or not, I was bullied at school and found it very hard to form and maintain friendships. Sometimes those friendships would end suddenly, for reasons that I couldn’t see. Some of the people I called friends bullied me, making their pain my problem. I passed that poison onto others, as is the way.
I learned some bad habits. I picked up some scars.
We can’t choose what we remember. It’s the first year of primary school, and I’m with two girls my age. We’re looking at a book about crafts that one of them had brought from home. I had taken a liking to a glossy page with a picture of heart-shaped ornaments covered in purple glitter.
We were around the corner from one of the school blocks, sitting on the bars of the fence, when the one of the girls looked up from the book and told me they’d both decided they didn’t want to play with me anymore.
Memory is a strange thing. Sometimes it can feel like the mind holds onto memories because my brain is still hoping I might catch on, understand what went wrong, and make sure that particular Big Feeling, that sharp bouquet of hurt and humiliation, never happens again.
I was too sensitive. Too stubborn. Too intense. Too talkative. Too forgetful. I am too much. I am not enough.
That’s the double empathy problem for you. If there are 10 people in a room, and one of us communicates differently, how can we know what they’re trying to say?
I say it’s assertive, but you say it’s aggressive, so let’s call the whole thing off.
I can only really think about my adolescence in short bursts. It’s a bit like dunking my head underwater – if I stay there too long, my heart starts hammering in my ears. It’s getting better, slowly, over time. I spend longer and longer playing forensic detective, unpacking and examining those frozen memories, filling in the missing pieces so I can understand why it went so badly.
Before I was diagnosed, that was the question on my mind, on my parents’ minds, on the minds of the behaviour and child psychologists I saw: What am I doing wrong?
Understanding why it happened helps. I now know the reality: that as an autistic young person being socialised as a girl, I was facing significant social and communication barriers that left me open to teasing at best, and vulnerable to social exclusion and emotional manipulation at worst.
To use another metaphor: I had been navigating the high-stakes minefield of adolescence blindfolded, one hand tied behind my back, and my shoelaces knotted together.
No-one had noticed the blindfold, but they sure as hell had noticed when I tripped.
Two weeks after the big question, I go back to see my therapist, and I ask questions: How did she know? What does this mean? What do I do now?
She has some answers, but mostly they are prompts to show me where I can start searching for my own.
I research, not the medical journals and research papers that refer to “detached behaviour” from their lofty academic towers, but the blogs and discussions of other autistic people, and I discover more and more of myself in their words.
It takes a few months for me to tell my parents. They’re too shocked to be supportive at first – their idea of autism looks and sounds like the daughter of our family friend, not me. They aren’t sure it can be true, but that doubt doesn’t matter, because I’m sure enough for all of us.
I’ve been here before (it’s a coming out story), and after my experiences of coming out as bisexual (once, and then again after a period of confusion), I am better at keeping their doubt and confusion and worry at arms’ length.
I know they will come right with time (they do).
I meet women, men and non-binary people who are discovering they’re autistic in their 20s, 30s, 40s, 50s, and we are all so grateful that we could find ourselves so we could find each other, and find ourselves all over again.
I start to discover the person I can be when I’m not terrified of saying the wrong thing, of being fundamentally unlikable. I start to remember what it’s like to fly without fear of hitting a window.
I learn why my feelings can be so overwhelming, so Big, and when I finally accept that they are a part of me, and not a character flaw that I have to overcome, the relief feels like letting out a breath I have been holding for years.
I start to understand what healthy relationships look like for me, how to work with my Big Feelings, how to translate them, how to defend them.
I see the ways other people with Big Feelings show care, empathy, passion, and feel so proud.
It takes a year, and then a few more until I am ready to walk with my therapist through the frozen memories of the school yard.
Contempt sits heavy and hot in my gut when I talk about it: my cringing earnestness, the pathetic way I’d latch onto people in the hopes they’d like me enough to let me stay. Listing my friend-repulsing traits is easy: I was talking too much, I cried too easily, I was so visibly insecure, too trusting, too quick to crumple, I didn’t stand up for myself, I didn’t understand that they were laughing at me.
I assure her that I know – rationally – it was because I’m autistic.
But if I’d tried harder…
What I know to be true and what I feel to be true are different things.
Shame, shame, shame.
My therapist is gentle but her voice is firm when she tells me that this was not my fault, and if I believe her, it means accepting that I couldn’t have prevented this painful pattern – the humiliation, the loneliness, the sickening swoop and thud when I hit another invisible wall.
For as long as I could remember, there has been no-one to fault but me, no actions to criticise but my own. Those pathways are well worn, easy for my mind to find and follow without a thought.
I am carving out new pathways now. It is hard, hard work, but I’m not doing it on my own.
The neurodiversity paradigm defines autism as a part of the range of natural variation in human neurological development. Just like biodiversity, a high level of neurodiversity is natural, important and good, and all kinds of brains and minds are equally valid, and equally valuable.
If you plant 10 different types of seeds in the same soil, some will do better than others. Some will need different conditions to grow, flourish, thrive. Once you can accept that, asking for something different than the default gets easier.
I have Big Feelings.
I am learning what I need to thrive.
Ruby Susan Mountford wrote this article on Wurundjeri country. A passionate advocate for LGBTIQ+ Disability inclusion, Ruby is committed to creating a future that values and respects diversity, collaboration, empathy and compassion. They currently serve as Vice President of Melbourne Bisexual Network and as a member of ASPECT’s LGBTIQA+ Advisory Committee.
This article first appeared in Archer Magazine #14, the GROWING UP issue. SUBSCRIBE TO ARCHER MAGAZINE.