In an anonymous article, one person tells us how they dealt with being diagnosed with Asperger’s Syndrome at the age of 22.
Early in the morning of the 30th May 2013, at the age of twenty-two, I was diagnosed with Asperger’s Syndrome or High Functioning Autism depending on your definition or preference. It hadn’t yet reached the staggering heat which characterised last summer, but it was bright and warm and the sun stung my eyes as I left UCC’s Student Health Centre. I immediately journeyed to the Disability Support Service, to the Student’s Union Welfare office, to a variety of different places to get various things in order, pausing only to log onto Facebook in the Boole Basement computer lab to write a quick message to my boyfriend which I remember as reading something along the lines of: “diagnosed with asperger’s. see ya later x”. It was an unemotional response to what may seem like earth-shattering news, but it was early and I was tired – I had completed my final exam for the final year of my undergraduate studies only the day before, and had celebrated that night. Those who are romantically-inclined might see some sort of symbolic meaning in the timing of the diagnosis, for upon my figurative entering into the adult sphere I received news which would completely alter – or rather enhance – my sense of identity. But also – the diagnosis was a mere confirmation of what I already knew in my gut to be true.
“It’s a trope that teenagers, but especially teenage girls, feel that there is something inherently wrong with them, that they don’t fit in, that they’re different.”
It’s a trope that teenagers, but especially teenage girls, feel that there is something inherently wrong with them, that they don’t fit in, that they’re different. But in a book I read since the diagnosis, a woman tells an account of the first time she felt that difference, as a child in a school yard during a lunch break, standing on the fringes. I never had one big “eureka!” moment which told me that I had this condition, rather a series of small, whispering, tentative “eureka”s, all which culminated in my eventual certainty. This was unquestionably one of them – the woman who described this account seemed to be speaking from a deep, neglected part of my soul as she described that all-consuming sensation of difference which filled her at that moment – I’d had an identical one as a child. I felt that difference throughout my teenage years and continued to feel it as an adult, when working in a busy retail store, looking at the other young women I worked with, feeling that there was some way in which I was inherently faulty in comparison with them – that my brain was deficient in some way in which theirs was whole (if you look it up, this has turned out to be slightly accurate). And I never felt that I could express that feeling, because what would I say? I feel different. What a cliché, I scolded myself and tried to ignore it.
In April I came across a test someone linked on Facebook designed by Cambridge’s Autism Research Centre, measuring autistic traits in adults (rather than diagnosing them, the girl who posted the link – someone I didn’t know very well but had met when she came to UCC on Erasmus a few years ago – stressed). A median score for the average, or neurotypical person on the test was 16, and for those with autism, 32 or over. I took the test as another way to procrastinate from study, and received a score of 42. I then shared the link to the test on my own Facebook, thinking it was hilarious that I had gotten this score – imagine if I turned out to have autism – but as people I knew commented beneath, telling me that they each had scores below ten or twenty, I did a quick google search for autistic traits. And so began the process of research, nail-biting, obsessive reading, and that bounty of small “eureka” whispers. Sensory issues, check. Social issues, check. And there were one or two moments when I read something that made my skin turn cold, my heart skip a beat. One of those was when I was taking another quiz from a website I had found, a quiz which claimed to have been designed by people with Asperger’s. One of the questions was, “Do you ever have trouble reading clocks?” To see one of my darkest insecurities spelled out in front of me was an experience of shock and joy, and joy really is a word to be used in describing the entire experience of getting diagnosed – joy at realising that there’s a reason for all of these things, these empty questions hanging around you your entire life. The only bad moment occurred one morning when I woke up, not having yet received the official diagnosis but knowing, and I began to cry as I realized that I would always from now on exist under this label which would completely colour how others would view me, how I would view myself – and the word “autism”, I would argue, has a very heavy cultural meaning, one steeped in memories of schoolyard insults, the “r” word and what having “special needs” meant.
“Sensory issues, check. Social issues, check. And there were one or two moments when I read something that made my skin turn cold, my heart skip a beat.”
About a day or two after I took that test on Facebook, when I began to experience niggling uncertainties or certainties as the case may be, I made an appointment with UCC Health Centre. A few days later, I met with a doctor who told me that she would refer me to the local consultant psychiatrist, who was away for the present (though she herself thought that my symptoms were worth checking out), and with the way events transpired, as I mentioned previously, my appointment took place the day after my final exam. This meant that I went through the month of April, and all of my exams in May, with this large unknown hanging over me, and the weeks of stress and study coupled with the idea at the back of your mind that you may have an identity-altering lifelong condition was certainly an experience.
Some things worth mentioning: the media portrayal of people with Asperger’s/autism, where it exists, is undoubtedly one-sided. All I had known of the condition before then came from The Curious Incident of the Dog in the Night-Time, a book studied in secondary school and TV characters that are highly suspected to be on the autistic spectrum – Sheldon Coopers’ and Abeds’. Whatever is to be said about the effect the media has on us, one of the first things I thought, when I began to suppose I might be on the spectrum myself, was “I don’t see anything of myself in these people”. They mostly came from scientific backgrounds (I was an Arts student), showed much more extreme reactions than I did, and were men. This is important because far, far more boys are getting diagnosed than girls, and it is commonly accepted that women “manifest” in different ways to men, ways many specialists don’t know much about, and so the lack of diagnoses being given to girls – or being given later in their lives, as in my case – is not due to a lack of women on the autistic spectrum (as some believe), but rather a lack of education in the ways girls experience and show the traits of autism. In my worst experience in dealing with a professional after my diagnosis, it was strongly suggested to me that I might not have the condition at all. Tip: if you’re dealing with someone in an extremely vulnerable state, coming to terms with the fact that they have a disability, approaching you for help – don’t say that.
However I hope that those who are getting diagnosed, whether as adults or children, are beginning to possess the power to shape the world that they live in, rather than conform to it. Since my diagnosis, I have heard multiple stories of people whom everyone suspects to have the condition but who has never been diagnosed, either because their parents didn’t want that diagnosis for them as a child or for the person’s own reasons as an adult – and what I can’t stress enough is what a liberating experience it can be to finally know the answers, and receive the assistance you have always needed and deserved. The power that can come with self-knowledge is not one to be trifled with.
The truth shall set you free.