Lost in Overstimulation: on being diagnosed as autistic in my 20s.
I had an incredibly active imagination as a child, and thoroughly relished the opportunity to be alone with my toys, so that I could freely play and invent several connecting kingdoms, with individual story lines. Any time I tried to create games with friends, I found myself becoming frustrated though largely forced myself not to speak up about it — they were good friends, but they didn’t do things the way I had envisioned in my mind. I would rather have played alone, but kids were supposed to want to spend time with their friends, so I did.
This need to be in control and lack of ability to be truly understood by peers was not seen as autistic. It was seen as bossy, dramatic.
Likewise, my intense emotional reactions to small triggers — once having held a knife to my throat and yelled “GOODBYE CRUEL WORLD” at the age of 6 or 7 over my father sending me to bed.
Admittedly, I had such a turbulent home life during my first primary school education that nobody thought to perceive my need for order and control or my awkwardness or strange use of language as anything but the quirks and reactions to trauma of a hurting young girl. Detecting the differences between a traumatized child and a neurodivergent child is almost impossible in many circumstances, especially given the higher likelihood of neurodivergent children experiencing abuse.
Honestly, I never really knew what autism was. And that’s not just my ignorance — it was never explained to my peers either. Autism was just a word you’d hear on TV in inspiration-porn shows. All I knew was that I felt different. And not the kind of different that future world leaders feel — the kind of different where I felt like everyone else had it together and I was mimicking, hoping I’d find my feet. I didn’t like people being in my home, even if they were my friends. I was obsessed with numbers around food — not in the way where I particularly cared about how I looked, but in a way where I was competitive about numbers I ate and numbers on the scale. This, like is the case with many autistic girls, fully took hold as anorexia later on.
I was also a bright kid, with intense anxiety. I spotted when there was something that made a person deemed ‘wrong’ at school, so I tried to avoid it. Certain behaviours. Certain interests. The kids I hung around with at school never knew me or what I did in my spare time. I essentially saw a giant gash in my leg letting all the autism out, and I fixed it with a band aid. On a few occasions it would fail and it would come pouring out — I’d lose my temper in front of my friends. At sleepovers if we made plans to do tasks and my friends decided that they’d rather chill and play it by ear, I’d have what everyone considered temper tantrums, or diva fits. It would always end with me locking myself in a bathroom — to this day when I sense a meltdown coming on, or any kind of strong emotions, I still lock myself in the nearest bathroom. My previous bosses probably thought I had chronic diarrhoea.
The issue is, persistently masking for so long of your life leads to a fragmented sense of identity later on. It’s exhausting. Not only am I feeling everything more than a neurotypical person anyway, but I’m also fighting my true self every minute I can. This is sometimes obvious — the way I speak and behave in a workplace would look to my friends as though I am an actress — and sometimes subtle, like apologizing for being slightly upset over something. Even when people know you’re autistic, and they tell you they love you, and that you can be yourself — when you’ve acted for so long, trying to switch it off feels impossible for most of the time.
One day a dear friend sat me down in front of a website titled something like “70 signs of Aspergers* in women” and suddenly it was as though I felt seen. Feeling like an alien? Being frequently taken advantage of? Detecting patterns in things? (admittedly, my need to see sentences and words as letters in multiples of three is quite possibly the MOST “how did I not know I was autistic” thing about me). This was at the start of 2017. Anyone who knows me knows that was a very difficult year for me. The stress associated with being in psychiatric wards completely destroyed my ability to mask. After 21 years of no professionals ever seeing it in me, one week into an admission a psychiatrist brought up autism with me.
I was officially diagnosed at 23, in 2019.
They said I was a tough nut to crack. The first psychiatrist at the diagnostic team didn’t believe I was autistic, and brushed it off while sending me home with the questionnaires for myself and my dad. When they got them back, they invited me back immediately. It took several more long assessments for the mask to show cracks and for them to not only diagnose me, but be so insistent that I join support groups, social clubs, and remain in assisted living when I moved out, out of pure concern about my ability to be independent. I did none of those things — there’s no shame in any of them, but I am an incredibly headstrong stubborn woman. I knew what I wanted to do, and I took nobody’s advice on board. Now I live in a gloriously colourful, accidentally very neurodivergent house. With cats. At home, at least, I am learning how to be okay with being myself.
This is not a piece to diagnose anyone. There are many reasons why a person can relate to autistic people while not being autistic. This is simply a way to express how it feels to be autistic and undetected for so long. Women and girls on the spectrum go unspotted at such an alarming rate, and it’s partly because they’re not even taught how to recognise themselves. There needs to be more stringent school education on autism and ADHD, the way they’d talk to us about eating disorders, depression and drug use. Undetected and misunderstood autism is a mental health issue in of itself.
Autism IS a disability, make no mistake. But if you offered me a way to cure myself with a pill, I’d burn the pill. This brain is a lot to cope with, but it’s mine and I love it. The world needs us, and it needs you to stop being so deeply scared of difference that children hate and hide themselves for decades.
*I do not support the term Aspergers or functioning labels in relation to autism, and merely use the word as it was a title. I do not have ‘high functioning autism’. I am just autistic. No one autistic person is better than another.
