I have a mosaic of burns and scratches across my hands, and no idea how I acquired any of them. I had the same thing for breakfast as I had yesterday and will have tomorrow, before setting off for the office where I work methodically through my paperwork from the left side of my desk to the right. I’ll get everything done, but not necessarily the way a normal person would. I look normal, but I’m not.
I am Autistic.
I’m not your stereotypical Autistic - I’m an adult, with a career, a mortgage and my first grey hairs. I’m female. I have no aptitude whatsoever for maths or science. Conversely, my talents lie in using words, and I actually communicate for a living.
I was finally properly diagnosed at 25, almost a decade after I was first labeled with depression and anxiety. Even today, with Autism more widely accepted in its many nuanced forms, it’s pure luck that my condition was discovered. I happened to be referred to a psychologist who happened to have experience with Autism in adults. He sussed me within moments, although a months-long process of interviews, questionnaires, IQ tests and EEGs followed before it became official. I could easily have been sent to someone else, and today I would still be riding the endless merry-go-round of misdiagnosis, mis-medication and general misunderstanding.
To be diagnosed with Autism a few different things need to be going on. Things like social impairment, trouble with motor skills or sensory processing, need for routine, and intense, obsessive interests.
First thing in the morning, before I get up, I do a ‘roll call’, wiggling toes and fingers as I try to work out where my extremities are and convince my brain to get back in touch with them. Even at the best of times, my body feels more like a vague concept of indeterminate size, shape and reach than an actual part of me - hence my ability to hurt myself and not notice. It’s worst in the morning, though, and there’s usually a great deal of whacking into door frames and tripping before things start working together. Before diagnosis, I just assumed everybody felt like this.
Half of my first cup of tea of the day usually ends up across the table, on the floor, or down the front of my dress. I have low muscle tone - not in the flabby sense, but clinically - which means my muscles tend to relax too far, and I under-estimate how hard I need to grip things to not drop them. I have tissues stationed at strategic points around the house and office to mop up spills, and have learned not to bother investing in decent china.
If morning is the worst time for my motor skills, it’s the best for my sensory processing. Take a moment to really be aware of everything going on around you - all the little background noises you usually block out, the way light reflects and bounces around the room, the feel of your clothes and skin and hair. I’m aware of all that, all the time. My brain doesn’t block any of it out.
Shopping centres are the worst. There’s a reason the classic place for a child with Autism to have a meltdown is while shopping - those places are hell on earth. Shops tend to be over-lit, that light then reflects off the thousand shiny surfaces, which also echo and amplify every squeak of trolley wheels and shout of passing children. Freezers roar, food smells - as do some of my fellow shoppers - and I keep bumping into people because I can never predict whether that chap coming the other way is going to veer left or right. After ten minutes of that, I’m ready for a meltdown myself.
The social issues, though, are the big thing for most Autistic people and the reason I kept seeking help over and over again.
When I was younger, I was somewhat unaware of other people. It wasn’t that I didn’t like other children, it just didn’t occur to me to make friends with them. This of course meant that by the time I was in upper primary school and realised that friendship was a thing, my skills to make it happen were just not there.
I also had - and still have - very little ability to read people. To tell who is friendly, who is mean, who wants you to come over and talk to them and who wants you to go flush yourself down the loo. Walking into a room full of strangers is no longer terrifying, but it’s still nerve-wracking.
I personally think the sensory shenanigans play a part in this. Because my body awareness is so shaky, I’m not particularly aware of how my facial expression or body language changes from mood to mood. I’m not even sure I do respond physically in this way - ‘flat effect’, or lack of emotional expression, is part of the Autism package deal. So if I don’t recognise those signals in myself, how can I recognise them reflected back from others?
Unstructured socialising scares me. Because I can’t read people and am not party to the subtle nonverbal dance neurotypical people engage in every moment without effort, I never really feel a part of the social ebb and flow around me. I feel less like part of the flow than like a rock in a stream, something that the prevailing current slams into, or diverts around and avoids. I put my foot in it a lot less these days than I used to, but socialising is an exhausting and often fearful business.
I left home more or less the same age as my non-autistic (or ‘neurotypical’) cohort, so haven’t lived with my parents in years. However, there is more support available locally for Mum and Dad, as the parents of an Autistic person, than for me as the actual Autistic in question.
Our local Autism support group is a largely for-parents affair, the main function of which is “tea and chat” mornings. Remember my hang-ups about unstructured socialising? ‘Tea and chat’ might as well be roller derby speed dating. When I rang Autism Queensland for advice last year, I was asked repeatedly about “my child”, and eventually sent some literature written for thirteen year olds.
I’m all for early intervention. Children, all children, need every opportunity to grow to their fullest potential, and that includes extra attention for children with special needs in those important first years, when little bodies, brains and minds are developing most quickly. But early intervention can’t be the only service on offer for people with Autism - not while we’re still mopping up past generations’ ignorance and diagnosing autistic people in their 20s, 30s, 40s and beyond.
Children with Autism become adults with Autism.
Do any of my followers have autism spectrum disorders?
I’m thinking about doing a zine about it. Let me know if you want in.
Or people without ASD, reblog this or something.
Signal boost, sounds like an interesting idea — Mairead