The Story So Far: I can’t remember when I first came across autism as a concept. I suspect it may have been the film Rain Man, but I never related to that. I remember it from the film Mercury Rising, which I did relate to in an odd way (the child is nothing like me, but there was something) and again in factual television where something ‘attracted’ me to autism. Then of course there was The Curious Incident of the Dog in the Night Time. But although I was drawn to autism in some way, I didn’t see myself in it.
At some point in the last decade, something changed, and I realised more and more that I fit an Aspergers profile. I vaguely brought it up with a GP in about 2010/2011 and was practically laughed at. At the start of 2013 my research went up a notch, and eventually I went back to (a different) GP and was referred for adult autism assessment at the end of January 2014.
The process is slow. I would still be sitting in an indeterminate waiting list if it wasn’t for Autism Oxford trying to speed the process. On Friday I had a pre-assessment to get my referral more accurate. It wasn’t an assessment as such, but a discussion of why I thought I might be autistic, what diagnosis meant to me, and what happens next.
I filled in a form with various details before the meeting, and I’m going to share a slightly edited version of one of my answers below. I’m still waiting, but with a better idea of timescales, and I should have finished the process in December or January. Am I autistic? I’ll have an answer soon.
Your reason for requesting an Autistic Spectrum assessment: Through the internet and reading blogs, watching vlogs, and reading books, I see myself in the stories of many adult women diagnosed with Aspergers. I’ve always been ‘slightly odd’ and never understood why I couldn’t seem to do things that others seemed to do naturally. I am an introvert, but that doesn’t completely explain things. Nor does depression, anxiety, or anything else. But reading female profiles and interacting with other adult women on the spectrum, I just see myself. I don’t feel confident to ‘self diagnose’ because I don’t believe in myself, so I really want to know for definite that this is what explains my life.
I was non-verbal when I started pre-school, and non-verbal when I started primary school. But only at school, at home my family called me a chatterbox. I was a voracious reader, reading well above my age level. I was sent to what I only ever knew as ‘the unit’ two mornings a week for approx. three years in primary school, to help me to speak. I was apparently assessed by an educational psychologist as having learning difficulties. Except I actually scored highly on IQ tests, and learnt everything despite not speaking at school. I started to whisper aged about 7 and talk in very small groups by 11. In secondary school I still couldn’t speak in front of a class, and was seen as being very shy all my life. Despite high grades, I failed my degree course. Looking back, this was partially due to not giving presentations in front of groups, partially because I couldn’t ask for access to things because I was too nervous, and mainly due to anxiety and not being able to work out how to ask for help when I needed it. I have a degree because I did Open University, which suited me well because everything needed was sent in a package and you didn’t have to go to tutorials or meet people.
Despite apparently high intelligence, I mainly worked in low level jobs until I worked up to senior information analyst in the NHS (band 6) but kept my dream job for only 15 months before taking voluntary redundancy because I wasn’t coping at all with being split between childcare and working, having many days off with anxiety, and being told by my line manager that he couldn’t manage someone who needed counselling just to turn up to work.
On the outside, I look successful. I had a decent job. I’m married. I have two lovely daughters. But inside I am cracked and broken. Having my first child seemed to start a spiral into depression and anxiety, except actually it was always there, but again in retrospect I think it’s the lack of space that comes with being a parent that has made things more obvious, because there is no time for me to internalise and recharge.
I’ve always found eye contact difficult, but I can force myself to make it, and with people I know it’s more natural. I find loud noises very uncomfortable, and often put my fingers in my ears to escape sounds. I dislike things touching my face, and I can’t wear anything on my head because it feels so uncomfortable I can’t function for thinking about it. I can’t leave the house when I wear certain clothes because I feel too uncomfortable. I don’t wear make-up and I can’t wear high heels. And I’m not even interested in any of these things, or any traditionally ‘feminine’ things. I don’t believe in male/female brain differences but have always been seen as odd because I like ‘male’ oriented things. I don’t. I just like what I like. I was best at maths, computing and science subjects at school. But not science practical tests. I was good at exams and knew how to pass them easily. If I was interested in the subjects. I have done all sorts of stimming without realising it – biting my lip as a child, biting nails, chewing soft toys, swaying and lightly rocking, bouncing on feet, but mainly I keep everything internal so as not to be seen. I used to not brush my teeth or wash my hair until teenage, but now I ‘feel’ that my hair is unwashed and can’t leave the house without showering and washing hair. I can ‘feel’ nail varnish on my nails so don’t wear it. I used to like sitting upside down to watch TV when I was younger, and didn’t understand when people said that the world looked upside down because my brain compensated and everything looked right to me. I like things to be organised but I hate cleaning because touching slimy things makes me feel uncomfortable. I hate the smell, taste and texture of bananas, they make me want to vomit. I never am organised, because I want things to be done in a certain order but it’s not always possible. I get stuck when trying to tidy and declutter the house because I can’t start on one part until another part is done and everything is in the wrong place. I have always been a hoarder, I feel very sad when I have to get rid of things.
I’ve often been told I think out of the box and can solve problems in ways other people don’t think of, but seem the most obvious to me. I can totally miss the point in what people say and take things too literally, but I don’t relate to misunderstanding metaphor etc because I know what they mean. I could go on and on, and probably still forget to mention what is most important.