In an earlier post I postulated that one of the reasons I remained oblivious to the fact that I was autistic for so long was that I was so accustomed to my normal that I simply didn’t imagine that anyone else perceived the world differently from the way I did. I suspect there are several other reasons too, and if I ever get my act together sufficiently to turn this whole experience into a book then I’ll gather them all together with proper references and so on. For the time being, since this is a blog that is part of a process of exploration, I’ll just observe them as they occur to me.
First, and probably most obviously, I grew up in an era when autism wasn’t recognised in the way it is today. Teachers throughout my primary school career simply didn’t have the knowledge that would have enabled them to spot what was going on. By the time I got to secondary school my academic abilities came to the fore and I just became one of those slightly nerdy kids who just doesn’t really do much in the way of partying. I was bespectacled, with braces on my teeth and no sense of fashion, and when asked if I preferred Spandau Ballet or Duran Duran, answered with “Neither, I like Schubert.” No wonder I was bullied! Nobody looked for any further explanation, and I’d learned to keep the worst excesses of my “tantrums” and so on reasonably well under wraps by then.
I was also female. Autism back then was predominantly diagnosed in males. I had what seemed to be perfectly good speech, had learnt how to fit in as well as I was ever going to, and didn’t have any specific learning difficulties – in fact, as far as academic work was concerned, rather the opposite – where I struggled with the project-based group work and interacting with other children at primary school, I found the formal rows of desks and the specific subjects at secondary school much easier to cope with. It was still known that I wasn’t very good at writing essays, but I was learning fast. One of the things I do have is a massive capacity for learning, and it’s probably one of the things I love to do most.
I don’t know the exact dates of the history of diagnosis of Asperger’s Syndrome / “High Functioning” Autism (whatever name is in vogue at the time – I’m still getting to grips with the terminology, but I’m already developing a dislike of “functioning labels”) and I don’t currently have enough energy to research as thoroughly as I’d like (that’s another thing I’ll deal with if this ever becomes a book or similar). However, minimal research suggests that such diagnoses were not routinely given until the 1990s. By that time I’d left home, was away at College, and surrounded by many eccentric students in both Oxford and London. Any quirks wouldn’t have featured. I also lived alone for much of that time, so had a lot of recharging time, and even though my progress wasn’t smooth and I dropped out twice, it was attributed simply to “a change of course” in the first instance and “anxiety with financial problems” in the second.
I was also young enough that I had a lot of energy available to me, and by that stage had given up any quest to fit in or have lots of friends. I was an eccentric academic type. I didn’t need friends. I got on reasonably well with most folks but wasn’t close to any of them. I also drank regularly. I thought nothing of having a glass of whisky before breakfast, so my social abilities were probably better than their natural state because I was regularly slightly anaesthetised! And still, people wouldn’t have imagined I was autistic as I had a pretty good act going by then. I didn’t think that eating beef chow mein at 6.10 every night for a year was strange – even though it’s now screaming “rigid routine” at me. I organised my life with post-it notes and made list after list after list, which I now realise was compensating for impaired executive function, and I survived.
It started to fall to pieces as soon as I had to earn money. As soon as the act had to be done 8 hours a day 5 days a week. That was beyond me. But even then, nobody would have imagined I was autistic. By then I had anxiety and depression. I entered the world of mental health issues, antidepressants, and nervous breakdowns. The pattern for my early adulthood formed – I’d break, stay off work, go back to work, break again. Then I’d have these phases full of energy, but no medic knew about those until years later because it would be odd to go to the doctor to report having lots of energy. I’d never heard of hypomania at that stage.
My jobs changed. I gave up full-time work as it became apparent it was impossible for me, and got gradually “easier” and more part-time jobs. I limped on with these into my 30s and then the diagnosis of bipolar disorder finally came. I eventually admitted defeat and spent more and more time at home, alone, on the sofa under a blanket.
Any autistic traits wouldn’t have been noticeable at that stage because there was nobody to notice them. I also had a diagnosis of bipolar disorder so anyone who did notice anything a bit odd about me put it down to that. My contact with the outside world also reduced substantially for another reason, which is another reason that it took until I was in my mid-40s for autism to be suggested.
As a couple, apart from going to work, we withdrew from the world as we went through our 30s. We lived in a fairly remote place (chosen because it was the only place we could find where the landlord would accept us with pets) so getting to social events wasn’t easy. We were both struggling with mental ill health and when we weren’t experiencing crazy episodes of mania and travelling round Europe we basically stayed at home.
We also failed to have children.
As it became apparent that we couldn’t have children and ended up even more depressed after years of infertility clinic appointments and investigations, we found going out into the world with children around increasingly painful. We crossed the road to avoid Mothercare, avoided places that labelled themselves “family friendly” and also saw less and less of the small circle of friends we’d retained from college days. As they produced their children we simply lost contact with them – people who have children talk about children – a lot. We couldn’t deal with it. By that stage autism was much better known about than it had been earlier in my life, but I was now mainly hidden away from the world so, again, nobody would have noticed. We didn’t start to make new friends until much later, when we got new hobbies and got back out into the world in our early 40s.
And, with the childlessness, I lost my best chance of being diagnosed in my 30s. As I have read accounts of people my age who were diagnosed in their 30s, it becomes apparent that many of their diagnoses followed their children receiving a diagnosis. Modern primary school teachers in the 21st century have knowledge that my teachers didn’t have in the 1970s. Had we had children it is likely (given that autism tends to run in families) that they would have shown some signs. If we had been 21st century parents, equipped with the Internet and so on, we might have tried to establish what was going on if our children had exhibited the same signs I did in my childhood.
But we had no children. So no contact with the sort of information that would have explained my issues. I didn’t get to read books about autism until somebody else – who, herself, knows about autism because she has two autistic children – sent me a book. She couldn’t have known about me in my 30s because she is one of the “new friends” who I didn’t meet until I started to go out into the world in my 40s.
I lived in total oblivion until this year. For me to know I was autistic required the intersection of several factors – autism awareness had to reach a certain level, I had to run out of energy to maintain the mask, I had to be well enough to be out in the world so that my behaviour was observed and obvious meltdowns were triggered, and other people had to explicitly suggest to me that I might be autistic.
Those factors didn’t intersect until I was 45 years old.