First post here.

After I had been referred for assessment, I was apparently seen in school by a Community Paediatrician. I don’t actually remember any of this, but apparently the meeting was fairly short and, according to my parents, I asked some rather blunt, inappropriate questions, such as asking whether the doctor (who I assume had an accent) was speaking English. Now, I can get how embarrassing and rude that must’ve been, but at the time I probably only asked because I was struggling to understand them (I still struggle with strong accents sometimes, or even no accents when overwhelmed, but I wouldn’t ask that now!).

The paediatrician basically summarised that whilst I showed quite a lot of traits of Asperger’s Syndrome, they wanted to wait and get more information before coming to a conclusion, which is fair enough. The appointment was fairly short, and it can be very difficult to get a full view of someone’s development after only a single, short, meeting.

At this point, my parents started looking into private options. For readers outside of the UK: most British people don’t use private healthcare, as we rely upon the NHS for many, if not all, of our medical needs. It is not common for people to buy private healthcare. It tends to allow you to essentially jump from a long queue to a shorter queue, and can mean longer appointments. Nowadays, the NHS still provides amazing physical healthcare. However, it’s mental healthcare has long waiting lines. Once you finish waiting, the care can be great. But many are forced to wait for months, if not years, for assessments for disorders like ASD.

Luckily for us, my dad had private healthcare from his employers (again, not a very common occurrence as far as I know) so we were able to seek private help. I saw a Child Neuropsychologist for around an hour a week for 6 weeks (as far as I remember). This allowed her to get to know me better and see me for longer. Rather than just seeing me once, she saw me across a longer timeline and therefore had a better understanding of my problems.

From what I remember, essentially I went to a lady’s house every week, and sat with her in the kitchen whilst my parents waited in a little room with a sofa. I remember we would do a variety of tests, that I actually enjoyed because they seemed like puzzles. For example, I remember I had to read a paragraph and recall some of it (not really interesting), and decode some symbols (way more fun). So I thought that was pretty cool, even if I didn’t actually really know what was going on or why. To be honest, I don’t remember caring that much. Maybe I thought it was tutoring, or some kind of test for school.

I did not realise my social skills were also being assessed, which is actually very good as it meant I would not have been tempted to camouflage any ‘odd’ things I did. At that point, I wasn’t really aware of which of my behaviours were considered ‘weird’, or which of my social skills were lacking. All I really knew was that I did not understand people and most of them did not understand me. I would much rather read than socialise, because other people were confusing and stressful. I had no clue why every other child could easily make friends, but rejected me almost instantly. Even according to my diagnosis, most of my classmates apparently found me annoying, whilst a few ‘tolerated’ me. So overall, I understood that I was not behaving ‘normally’, but I had no clue how to figure out what I was doing ‘wrong’ or how to change it.

Anyway, one specific aspect of the social evaluation always stood out to me. I remember at one point the Neuropsychologist told me I could bring in toys if I wanted. I took this to mean that I ought to bring some toys in, and therefore took some Sylvanian families toys in to the next meeting. From my own perspective, she never brought the toys up during the session, which confused me. I assumed I was meant to play with them, because why else would she have told me I could bring them? So I just stopped a task and played with them, because I wanted to and because I thought that was what I was supposed to do. Now, according to my assessment, “[I] would suddenly break away from a task we were in the midst of to take out a toy to play with”. Which, whilst technically true from the view of an observer, does not really fully explain my behaviour. As a side note, that is one of the main problems I find in many aspects of autism research. Many researchers make assumptions from their own, non-autistic perspective, and often assume that is the only possible reason for engaging in a certain behaviour. They often also use autism theories to explain them, which again may rely upon inferences. If the Neuropsychologist had asked why I brought the toy out I could have told her (which is not possible for many non-verbal autistic people).

Other than the above though, the Neuropsychologist noted a lot of my autistic traits. She reported after around 20 minutes I started to get fidgety in my chair (something still true today!) and was very observant of visual details. I did not engage in conversation without prompting, and made variable, occasionally inappropriate eye contact. I apparently lacked a ‘Theory of Mind’. I agree that at that point, I did not really have a well developed ToM, but now I do believe I have a fairly good ability to understand and empathise with other people, if I can figure out what they are feeling and why. I think this ToM developed in secondary school, when I essentially realised and reluctantly accepted that others did things for reasons I did not know, and would not tell me. I did not understand why others did seemingly inexplicable things, and kind of took too long to realise they don’t automatically know what I mean or experience.

When she did IQ tests, she found I had an uneven skill-set. I won’t say what my exact IQ scores were, because many people (myself included, some of the time, unless it is specifically asked) find it pretentious. But basically I did very well on the ‘Perceptual Reasoning Index’ which had stuff like visualising 3D objects I think, and a lot lower on my ‘Working Memory’, ‘Verbal Comprehension’, and ‘Processing Speed Index’. I also had a very low executive skill score, along with a low visual-motor skill score. That is the reason I was allotted extra time in exams; my processing speed is far slower than would be expected from the other scores.

At the end of all of this, I was diagnosed with Asperger’s Syndrome. In more recent documents, this is usually referred to as ‘High Functioning Autism’ of ‘Autism Spectrum Disorder’, as Asperger’s is no longer diagnosed in the DSM-5. My parents told me about the diagnosis a few months after I got it. I remember reading a few notes that suggested they were told to wait until I was around 15-16 to tell me. I am very glad they told me earlier, as it meant I no longer felt like I was just failing at socialising whilst everyone else was passing without even trying. I do not exactly remember how they told me, but I think my reaction was a little anti-climactic, as I had never really heard of autism or Asperger’s before that, which is probably good as I did not have to deal with all of the fear mongering in the media. I had no previous assumptions about autism, other than ‘huh, that’s a thing that I have that explains why I struggle with social stuff’. Once I started researching autism, it was amazing to read other people’s accounts and just think ‘hey! I do that!’ and feel like you weren’t the odd one out any more.

My actual diagnostic assessment had a lot more in it (it’s a fairly long document), but I’ve kept it brief because it’s quite personal, and because this post is already pretty long.

From what I’ve read and seen, diagnostic assessments have changed a lot over the past few years. It can apparently take months, even years, for that fairly short initial appointment. I was also lucky to have a Neuropsychologist who was aware of the differences in how autism often presents in females vs males. Nowadays, there is more attention being paid to autistic females who may have gone undiagnosed, which is hopefully a step in the right direction.