When I go about the world, as a woman in my fifties, with three adult children I'm often challenged by people, who say "I'd never guess you were autistic if you hadn't told me".
My common reply is "Well, you should have seen me when I was a kid!"
I was diagnosed with Autistic Spectrum Disorder (aka Aspergers Syndrome) when I was 34. My GP had been asked to refer any patients he had with mental health difficulties who didn't fit the 'typical' diagnoses, and who met certain criteria, to an Autism Research Centre in a nearby university.
I'm not sure what those criteria were, but I suspect my chronic anxiety, intellectual ability, accompanied by significant social difficulties, were factors. My mother had to go with me, as a witness to my behaviour as a small child; and it took two days. The goal, as the scientists explained to us, was to develop a quicker, more accurate means of diagnosing autism.
Early Life - Little Professor
Ever since toddlerhood I was an 'unusual' child. The expression 'Little Professor' which Hans Asperger coined in the 1930s, fit me to a tee - I had an encyclopaedic memory for facts, and would often avail adult friends and relatives with them, regardless of their interest (or lack of it). But I had little interest in my peers and found their behaviour perplexing and illogical. Adults were safer, although they too often acted contradictorily. Sometimes, for no apparent reason, they would get angry and say, "I don't want to hear another word about... [insert special interest]".
I was happiest when allowed to hang around with a 'safe' adult, engaging in some intellectual activity. I particularly got on well with my grandfather, a man whose pedantry and narrow-mindedness drove everyone else insane. As I grew older, I started to see that side of him too, but as a young child, I liked the fact that he never demanded I be anything other than my 'little professor' self. My grandfather used to take me on nature walks, to visit eccentric relatives (of whom we had many) and on one occasion, to the National History Museum, where we eschewed the dinosaur exhibits for the backroom display on geology. Rocks and maps were my grandfather's passions.
I started school relatively late for the times, at passed 5 years old. It did not go well. I couldn't understand the rules, which seemed to vary constantly - one minute we were to sit down quietly, the next we were supposed to speak, then we were supposed to 'play' (something I never quite figured out) and then, just as we were enjoying an activity, we had to stop doing that and go to the Hall for 'Assembly' - which involved sitting on the floor in a huge group and singing hymns (and it wasn't even Sunday!).
In an attempt to get out of interacting with my teacher, I told her that I could already read. But when she discovered I had in fact memorised a reading book, she got angry with me. The thing is, I wasn't entirely clear what reading was. I was almost eight years old before someone took the time to explain it.
So early school was perplexing, and I did make one or two friends - although I think my feelings were pretty superficial. I remember one friend joking to me that I treated her as a 'public leaning post', as I would lean against her in the playground to keep warm in the winter.
By the time I was seven and in a different school, my inability to read and write was becoming a problem. I thought I was probably not as smart as my classmates, which didn't disturb me in the slightest, but I could tell it disturbed the adults around me.
Finally, a teacher decided to see how much I had learned, and quickly realised I did not know any phonics or any strategies to read and write at all. At the time 'whole word' reading was the fashion in teaching. I didn't even understand how to pronounce the individual letters of the alphabet, or how letters clumped together to form words. The teacher had been on a recent course and suspected dyslexia, but at the time, my parents were told "Don't mention dyslexia - they'll think it's a middle-class word for thick".
Thankfully, she was able to teach me to read and my passion for reading started then. For most of my life, reading has been my escape from difficult reality.
Secondary School - from Slow to Disturbed
By age eleven, I was in secondary school. I had quite a few schools due to my father's job, which necessitated frequent moves, but for me, starting a new school was all part of the routine. I liked some lessons, but for the most part, school was a strange alien world where I didn't fit in. I remember, when I was younger hiding under desks and in the stationary cupboard, not out of fear of bullies or whatever, but simply because it seemed more 'comfortable' than an open desk in a large, airy classroom. Child welfare people would often ask me 'why' but were never satisfied by my answers. But at secondary school, I realised that physically hiding got me into a lot of trouble. I heard words like 'disturbed' used of me.
Before my 11+ exam (an intelligence test used to determine a child's supposed suitability for academic 'Grammar School'), I had been thought a 'slow learner' or 'remedial'. I never understood why being in the 'R Stream' was considered a social shame, and since I was little interested in my classmates, their academic ability or lack of it was irrelevant to me. But then I had the tests and suddenly, I went from 'R' to 'A' stream. My overriding memory of that was that suddenly, I was expected to know French. That was not a good experience.
From that point on, instead of teachers patting me on the head and not expecting much of me (which suited me fine), I was constantly being asked impossible questions about why I did what I did and how I felt. It was impossible because their premises were often so 'off' that the question was meaningless. On handing in an illegible piece of science homework, for instance, the teacher asked me what was happening at home? I randomly mentioned things that had happened at home that seemed out of the ordinary - my father had lost a glove and shouted a swear word, the dog had been sick on the doormat... random events that just seemed to perplex the teacher more and more. But not as much as it perplexed me, trying to figure out what on earth the teacher expected!
It seemed that the teachers and I lived in very different realities, which while parallel, never quite intersected. Even in maths, one of my best subjects, my teacher despaired of my 'tortuous ways of reaching the answer'.
I never quite understood my education - it was all "Go to this room", "Talk to this person", "Be quiet", "Go out there and play with those children", "Fill in this form" and random "Let's now talk about Beethoven... or the Romans... or the melting point of iron..." in subjects that were considered weirdly separate, despite clearly over-lapping (in my opinion of the time).
Looking back, the statement by psychologist Carol Gray that "No one will willingly follow a command that doesn't make sense" explains why I was such a compliant child most of the time, with sudden bursts of rebellion at others (the behaviours labelled 'disturbed').
Adulthood - 'Never enough'
As I grew into adulthood, despite my love of learning, my social difficulties lead to a disastrous attempt at university. Studying biochemistry, I broke most of the glass in my lab by the end of the first term; And broke quite a bit of general equipment too - entirely by accident. I fell asleep in many of the lectures; failed to get my lab reports in on time but wrote exceptional essays. And socially, I wasn't popular, and I was easily manipulated. So, although I had good friends, I was extremely vulnerable.
Becoming unwell, both physically and mentally, I decided to drop out at the end of my second year.
The years preceding my diagnosis, I attempted to get into various careers, but seemed to suffer from continual, severe stress, which often made me physically ill. I attempted to train as a nurse: I was good with the patients, and wrote essays my tutor thrilled over, but I was disorganised, sickly and frequently bullied by my peers. I worked in a laboratory, but my skills with glassware didn't improve and I was rapidly fired when I (accidentally) set fire to the paper towel holder. I worked in an academic library, where I seemed to fit in with the weirdly eccentric and academic staff, but the company failed, and I had to look for another job.
I then went into computing, but despite having what was known as 'The Geek Syndrome', it turned out I wasn't terribly good at it. And my bosses despaired of me.
In every job, the problem was both my alternative style of learning, with a pedantic need for detail (perceived as 'neediness'), and my lack of appropriate social skills. I would offend people. I was too blunt, too 'honest' (apparently not so much a virtue as I had assumed) ... I asked too many questions, I was too literal, I 'pestered' my bosses too often (because they had not given me clear directives).
So, when I flinch when people say, "You're so intelligent!" (Presumably meant as a compliment), this is why: to me it seemed that I was never enough. What was the use of 'intelligence' if you still got fired?
By then I knew that my social skills were awkward and inappropriate. I knew I talked too much but didn't seem to be able to control it. The way I expressed emotions was problematic for people (either too much and 'aggressive' or not enough and therefore told I was a psychopath!). I was told I spoke in the wrong way to superiors, as if I considered them equals. But I did know understand the 'right' way. Or understand why I had to acknowledge their superiority since they surely knew it already?
In this time, however, I had learned how to make friends and had married - a mathematician (ie one of my 'tribe', I'd later conclude). And on giving up work to have a family, I became involved in parent support groups and made more friends. Socially, my life was going better than ever. I said at the time: I have no trouble making friends, but great difficulty making acquaintances.
Despite the upside of having loving and loyal friends, and a supportive family, my self-esteem and mental health were suffering. The chronic 'stress' I had always suffered was now being identified by my doctors as 'Generalised Anxiety Disorder'. I no longer had work to worry about, but with three small children, all of whom turned out to have special needs (albeit milder in both my girls), I was drowning.
Internet Friends & Diagnosis
It was the 1990s, and being an early adopter of the Internet, I went on the message boards to find kindred souls. Friendships that I developed then have lasted until this day, but there were also the 'flame wars' - written fights which would escalate into insults and resentments that would send me spiralling into self-hate and anxiety.
Nevertheless, I found friendships in amongst the fights, and one of these friends, L, whom I 'met' on a mental health board, was to write to me one day and say "Hey, I've just been diagnosed with Aspergers Syndrome, and I think you've got it too!"
By this point I was on the hunt for an explanation for my difficulties, so had accrued quite a lot of information about conditions like ADHD, personality disorders, mental health conditions and Aspergers (which I knew to be a form of High Functioning Autism). But everything I read about autism at that point didn't sound like me. After all, I had friends! Lots of them! I was happily married with children and coping OK as a mum. I wasn't rocking in a corner, memorising birthdates and counting cards (I think Dustin Hoffman's portrayal of 'Rainman' has a lot to answer for). But L, being autistic I suppose, persisted. He was convinced I was autistic and gradually knocked down each of my objections.
I first approached my doctor over the possibility I had ADHD. I still wonder about that as I'm a bit... well hyper. But the psychiatrist felt that no, I wasn't ADHD. He did suspect something neurological, he said. Looking back, I think he was hinting, but I've never been good at getting hints.
So, it was sometime later I arrived at the Autism Research Centre of my local university. By then, I had joined an internet group called alt.support.autism and talked to many other able autistics ('Aspies' as we called ourselves) and had been convinced my initial feelings were mistaken, and that I did actually have autism. But my own certainty worried me - like many autistics, I rarely sense doubt about something I've reasoned out, even when it turns out I'm completely wrong, so I've learned not to trust that feeling of 'certainty'. Just because I think I'm right doesn't mean I'm not wrong!
The psychologist at the A.R.C. later told me that a majority of their patients turned up to the centre already fully knowledgeable about autism and Aspergers, able to quote chapter and verse of the diagnostic criteria, with arguments both for and against their diagnosis. Unlike many of his patients, I didn't present him with a dossier of psychological evidence, at the door, or quote his rivals in autism research back at him!
He also told me, probably joking but I cannot be sure, that my autism was so glaring, he could practically diagnose me from the corridor. With today's controversies about the under-diagnosis of autism in women and girls due to our 'atypical' presentation (ie different to the boys), I suppose I am lucky that I fit the criteria so precisely, in a way that not many girls do. Still, 34 years a bit late.
My mother cried. Not from sorrow, but from relief. For so many years, my parents had been blamed for my eccentricities and blamed themselves for 'mistakes' they made in raising me.
I was just happy. I had found my tribe.
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