The first thing I want to cover is my autism diagnosis. I know people can be cagey about this sort of thing as it covers sensitive medical information and whatnot, but me being me I’d rather just be upfront with people over what I deal with. I was diagnosed on the spectrum at age 33 after searching for answers as to why I was essentially failing at life and slipping into a deeper and deeper mental health crisis. The DSM V had just come out so I was diagnosed with Autism Spectrum Disorder Level 1 as I have no accompanying intellectual challenges. Prior to 2013 this was Asperger’s Syndrome. I tend to use Asperger’s and autism/autistic fairly interchangeably.
I was a highly verbal, gifted and annoyingly precocious child who could read well above my years and soaked up information on my interests (ok, obsessions) like a sponge. I was great at schoolwork but in the schoolyard I didn’t have a clue and was bullied from pillar to post until I was removed for home schooling. I was frequently confused and anxious about what was expected of me all through my childhood and teenage years with less and less clue as the social behaviour of the kids around me became more and more complex. I started observing and copying other people to try and get by, in effect becoming a social chameleon, all while feeling this underlying sense of terror that at any moment I was going to get things horribly wrong. I felt different and out of place from a very young age. As I obsessively kept practically everything I’ve drawn since childhood, I still have a drawing I did as an 11 year old of myself as a little anthropomorphic animal of some sort trapped in a glass box. I didn’t feel fully human and I felt like there was these invisible walls stopping me from fully participating in my own life.
I had, and still have, sensory problems – clothing tags, sock seams, showers, hair brushing, tooth brushing etc was all a constant barrage of discomfort as a kid. In fact I got around stark naked at home for as long as I could get away with it because clothing was awful and restrictive. The older I’ve become and the more anxiety I’ve fielded, the worse the sensory challenges have become. Things that were more or less ok as a child, like loud noises and listening to music, have become incredibly hard for me to deal with now and can easily trigger shutdowns and meltdowns.
As to meltdowns, I rarely explode outwards when everything becomes too much, I implode instead and run off to be alone and cry/stim (yes, including self-injurious stuff if the meltdown is bad enough). I was so anxious about upsetting people with my behaviour as a child that I developed a strong ability to bottle everything up and go on autopilot until I could get somewhere private to lose it. I have had several mammoth meltdowns where I haven’t been able to do this, but in general it’s a very useful mechanism. It has, however, had the side effect of people giving me the side-eye when they learn I’m on the spectrum – I don’t act like the stereotypical small boy melting down in public. In short, I’m a textbook case for a female on the spectrum.
School was easy for me due to above average intelligence, so the extent of my executive function issues didn’t show up until high school when essays and a heavy workload began to place more demands on me. As it turns out, I had no idea how to study and no way of figuring out how to organise myself properly. Everyone just assumed I should be able to keep sailing through because I always had, and I put an intense amount of pressure on myself to try and keep up.
My first breakdown was in high school when I stopped being able to cope with the stress and vomited for weeks on end until diagnosed with extreme anxiety and put on a medication to control it. This got me through high school and through two diplomas until it stopped working. My medication was changed and with the help of that one I gained and held a job… for a short time. I repeated this pattern of gaining and quitting jobs into my mid 20s – I was an excellent worker, honest and responsible and always striving to do my best but I couldn’t sustain it. My mental health would crash every time and the longest stretch I ever managed was one year. The shortest was a couple of weeks.
Unfortunately this medication also had the side effect of destroying my ability to do art. I grew up with art materials as my constant friend and there was not a blank surface that was safe. While my art skill was generally above that of my peers, it was a pretty normal trajectory of practice a whole lot and improve in tiny increments. I was not a child prodigy but I had some talent. Art was a huge part of my identity and it just evaporated. It was gone for 10 whole years (apart from a few very lonely exceptions), long after I’d stopped taking the medication. When it came back it was completely different and this is part of why I was identified as having savant syndrome, however that’s for another post.
In my mid-20s chronic depression was also added to my growing list of mental health complications. I tried to do university and managed 6 weeks before crashing and burning. I was put on another medication which not only didn’t help all that much, it started causing rapid cycling mood swings. It has been years since I’ve taken this medication and I still have them, though not as viciously as when taking it. A constantly growing list of failures, the constant companions of anxiety and depression, and increasingly more issues with sensory overload accompanied me into my 30s. I became a ‘frequent flyer’ of what’s known in Australia as the Mental Health Plan, a government scheme to help offset the costs of seeing mental health professionals. Psychologists were not able to offer me a whole lot – though I did learn the basics of cognitive behavioural therapy which has made some difference in my ability to manage my severe anxiety.
Finally I was diagnosed with ASD by a psychologist who knew what she was looking at. I have since been seeing another psychologist who also has many years experience with people on the spectrum and her professional opinion backs up the initial diagnosis. With her help, and with the vast amount of reading and researching I’ve done since diagnosis I’ve been able to pinpoint many of the things that make up my specific spot on the spectrum along with the social challenges, depression and anxiety. Among these are sensory processing disorder, auditory processing disorder, prosopagnosia (faceblindness), executive dysfunction and synesthesia.
Since I have a history of long-term side effects from medications, professionals are now loathe to try any more with me so I am learning to cope through a variety of other means – mindfulness, meditation, breathing techniques, diet, exercise and so forth. Now that I know exactly what I’m up against I’ve been able to put a face to a lot of my anxieties which gives me hope that I can confront them over time and work out ways to ‘be’ that don’t put myself under a crazy amount of stress.
Since my art ability came back in 2011, I’ve tried several times to get it going as an income-generator as I’m unable to hold a job. Each time I started off well, taking commissions, entering exhibitions, even winning a few awards. Unfortunately, I would hit a point where the terror of social anxiety and my lack of decent executive function skills would break me and I would stop doing art and disappear. This time I have the help of several people, including professionals, and a fiery determination to not let things get the better of me again.
A digitally-painted self portrait