I was diagnosed with Asperger’s Syndrome when I was 10, and I was told about the diagnosis when I was around 11. As I was quite young, I don’t remember a huge amount about the actual diagnostic procedure, but I thought it may help for others to see what the diagnostic procedure was like in the UK (I’ve heard it’s got more difficult since I was diagnosed).

According to my neurological assessment (basically the document where my IQ results, observations, past history, and parent/teacher opinions were documented), the first time my parents took me to a psychologist was when I was ‘in (my) third year’. Now I’m not sure if this means when I was 3 years old or in Year 3, and I can’t remember because I was so young. But apparently I had an extreme phobic reaction to dogs and birds. As I’ve mentioned, I still hate birds, and still get really scared when around them. I am not really scared of dogs anymore, except when they jump up or scratch me. Having a dog really helped with my fear though (the same cannot be said for birds).

But anyway, I was taken to a behavioural psychologist about this phobic reaction, and I’m not sure what came of that. I don’t think my parents really remember much of it either because it was so long ago.

There were no more assessments as far as I know up until I was around 9-10. This was the time I returned to secondary school in the UK, and was under a lot of stress and no longer had a support system. I was doing well academically, but not socially. I would usually stay in the canteen for as long as possible during breaks so I could avoid other children my age in the playground, and I remember being asked/made to leave by teachers who wanted me to go and ‘have fun’. Nowadays, when I walk past my primary school I wonder how I coped as well as I did. There are children screaming constantly (as with most schools), running everywhere, playing games, and talking and shouting. I usually hurry past the school because it’s so loud. I think my sensory sensitivities have gotten worse since I was 10, because I would not be able to handle 6 hours a day of that nowadays. As an adult, I have the autonomy to say ‘no, I’d rather not go and play with everyone else’, or I can decide to listen to music and relax during my breaks. As a child, I had no choice. I do sort of feel like childhood can be a lot more stressful due to this lack of choice, lack of control. When you are autistic, everything feels chaotic and overwhelming, and as a child you don’t have the understanding or vocabulary to express this. As an adult, people often disbelieve or misunderstand my experiences. As a child, I couldn’t even express them because I didn’t understand what was going on. I did not know what sensory overload was, why I struggled to socialise, or why everyone else seemed so different and confusing.

So I was getting more and more socially isolated in primary school, and more and more stressed. It finally got to be too much for my parents when I started pulling out my hair during class. I remember that we would have some sort of activity where we had to sit on the itchy floor and were probably read a story or something. I would lean forward, cross legged, and pull my hair out because I wanted to see and feel the ‘sticky parts’, aka the roots. Now at the time I did not consider this an expression of stress; I considered it an ‘experiment’. I was curious as to why some hairs had the ‘sticky bit’ and some didn’t. Nowadays, I still pull my hair when under extreme, acute stress, but recognise it as a maladaptive stress response.

I remember trying to explain that I was pulling hair as an experiment, but thankfully my parents realised it was something more. They considered my social deficits, my repetitive behaviour (the one noted in the report is ‘licking my fingers’ though I don’t quite remember that. I remember flicking my fingers and hands in front of my eyes because the afterimage/blur was cool though), my inability to understand nuance or sarcasm, and my rigid love for logic and routine. They came to the conclusion that they should look into autism/Asperger’s.

When they went to my teacher, they were extremely fortunate. I have seen many parents of autistic children talk about how teachers can ignore their concerns, especially with autistic girls who tend to mask at school and then release the stress at home. Luckily, my teacher agreed with my parents and filled out some of the assessment forms when required.

This is longer than I expected, so I’ll discuss the rest in another blog post. I’ll also ask for my parents recollections about that time, and what they found hard or easy or confusing. I don’t remember a huge amount about that time because I was quite young and honestly, the whole diagnostic procedure just seemed like an excuse to go to a lady’s house and play some odd, but fun, mental games.