A note on language: I wrote these posts in 2016, when I was still uneducated about problematic language and functioning labels. I’ve chosen to republish these posts exactly as I first wrote them, unedited, and therefore you will notice that I use vocabulary I no longer choose to use, including ‘Asperger’s’ and ‘ASD’. I prefer the term ‘autism’ these days, and that is the term you’ll see in more recent posts. You may also spot some person-first language; these days I’m more likely to say ‘autistic person’ than ‘person with autism’.
Or, Might a childhood diagnosis of Asperger’s have been self-limiting?
Two conversations I had last weekend have made me wonder how my life might have been different had I been diagnosed with Asperger’s as a child. A good friend told me how much respect she had for the things I’ve achieved in my life, despite the challenges ASD (Autism Spectrum Disorder) brings; and my parents wanted to know how a diagnosis might help someone – child or adult – with ASD.
Of course, it’s a moot point for me. According to my research, Asperger’s wasn’t a diagnosable condition until 1992, when I was already into my teens, and from what I’ve read it seems that the rate of female diagnoses lagged far behind that of boys (and still does; whether that’s because it’s more prevalent among boys, or less detectable in girls – who present differently – is still being researched). But, had the condition been identified sooner, and had someone recognised my traits, how might a diagnosis have impacted on my life?
A lot of anxiety came from not knowing what to say, or when
I suppose I would have been given a statement at school and an IEP (Individual Education Plan). Young people with Asperger’s I have taught have had a quiet room to go to during break times and whenever things got too much for them (that sounds like heaven to me as an adult, never mind as a child…). I know that Aspie kids are taught to manage social situations – like one charming Year 10 pupil I met recently, who politely asked me how my weekend had been – and I’m sure just having someone acknowledge your ineptness in a matter-of-fact, let’s-skill-you-up sort of way must be a relief in itself. A lot of the anxiety I experienced as a child and a teenager came from not knowing what to say, or when to say it, how to start and end conversations and what topics were considered interesting or acceptable. I knew I was often rude, though I never meant to be, and so I tended to overthink my remarks until they came far too late, or not at all. As a result, people often thought I was ‘stuck up’, because I didn’t speak; or boring, because I found it easier to become absorbed in a book than to engage with others.
Teenagers these days seem more open to difference
So yes, I think that a diagnosis could have helped me: could have supported me at school when I was isolated, bullied or overwhelmed; could have given me access to help with the aspects of school life that others took for granted. But I also can’t help wondering how it might have changed me. Would it have singled me out all the more, highlighted my difference? In my experience, teenagers these days seem a lot more open to difference and supportive of disability. I’m not sure this was true when I was at school. Then, the stigma of a diagnosis might have been more of a hindrance than a blessing. On the plus side, I got to fly under the radar and do a passable job of blending in. On the downside, I was too outwardly ‘high-functioning’ for my own good, and had to endure the daily struggle of an invisible condition.
Why I got kicked out of uni, and why I didn’t let it ruin my life
It took me four years and two false starts to get my undergraduate degree. Apparently it’s very common for people with Asperger’s to leave a trail of unfinished degrees and job resignations behind them. We can cope with the work, just not with all the other stuff that goes with it. I had to repeat my first year after my first major bout of depression struck and I found myself unceremoniously kicked out (try sleeping until noon, missing most of your lectures for a term and not handing in vital assignments: that’ll do it). Similar problems the following year meant that I narrowly escaped the same thing happening again. The problem was not my studies; once I overcame the depression I did well and enjoyed the intellectual challenge. It was the social side of university, the unremitting social life, the noise and lack of privacy (and the feeling that everyone else was part of a secret club that I didn’t know the password for) that brought me down.
Might a diagnosis have been self-limiting?
But it never occurred to me to give up. All my peers were at university; it was the next step in life, and I was determined to be the same as everyone else. I knew vaguely that somehow it was more difficult for me, just as school had been, but it never crossed my mind that I was incapable of doing it. The same was true once I entered the workforce: I struggled with every interview, every boss, every job, but I never told myself I couldn’t do something. I just dug in my heels and did it anyway: if everyone else could do it, why shouldn’t I? A tiny part of me does wonder whether, with a diagnosis, I might not have developed this attitude; whether it might have been self-limiting. But of course, there’s no way to know the answer to that. I do wish, though, that someone had recognised that what I was suffering from was depression, and pointed me in the direction of help.
Diagnosis: help or hindrance?
Would I have achieved as much? Could I have achieved more? Would I simply have done things a little differently? If I’d had support at uni, would that have kept me on my first course? Would I have graduated a year earlier, from a different institution, in a different town? Who knows. And who knows how that might have changed the whole course of my life, for better or worse. You can’t go around second-guessing your whole life. What I do know is that I want and need a diagnosis now. Even if I get the diagnosis and no support is offered (who knows if there will be, or what form it might take?) at least I will have solved the puzzle that’s been nagging at me all my life. This journey is not really about getting help (although that would be nice, too). It’s about getting an answer to a long-asked question; finally feeling like someone properly ‘gets’ me and acknowledges what I’ve been struggling with all my life; and, having processed this new self-knowledge, being able to move on with my life. A life that will hopefully have more openness and honesty in it, and more real connection with others, as I’ll no longer have to hide behind a pretence of ‘normality’.