I suppose this is an unorthodox Autism Acceptance Month post, but so was my previous one. This is an expansion of a Facebook status I wrote about two weeks ago.
I have a difficult time relating to the accounts of late-diagnosed autistic adults who did not grow up with this label being used to marginalise, segregate and discredit them. I see so many accounts of unalloyed joy at being diagnosed with autism and having the diagnosis explain most or all of the difficulties they’d encountered throughout their lives. That’s not to say that late- and self-diagnosed adults don’t encounter oppression or stereotyping, especially after they receive a formal diagnosis and encounter stereotyping from misinformed practitioners, but that it’s of a different nature from what early-diagnosed people can experience. For me, though, it was a mark of Cain until I discovered the neurodiversity movement back in 2005 or so.
I was diagnosed before I started school and had my differences placed squarely within a pathologising framework. Deficits in social interactions. Lack of eye contact. Restricted interests. Deficits in personal organisation. I was wrongly thought to be intellectually disabled – to the point that a doctor declared that I would ‘never learn’ – because I was late to start talking, though this impression of me was mercifully very short. People like my parents and teachers would emphasise my weaknesses, either real or perceived, over my strengths. While I had two concurrent labels when I was at school – autistic (officially PDD-NOS and Asperger Syndrome) and gifted (I am not a fan of the word ‘giftedness’, by the way. I use it reluctantly to refer to an educational label and a neurotype, or a set of neurotypes, but the current language around it is not that great)- much of what I dealt with was pigeonholing, pathologisation and exclusion from opportunities that would have benefited me socially and intellectually. I felt like a ‘fake intelligent person’ because of my diagnosis. In fact, my methods of internalising and interpreting information were frequently treated as autism symptoms. I was forced to sit through boring classes that didn’t challenge me intellectually because ‘quiet hands’ and extinguishing ‘behaviours’ came first. While I did skip a grade and participate in gifted programming for the majority of my elementary- and middle-school years, I was still under-stimulated intellectually and often found myself disengaged from the general-education curriculum. There were also a lot of neurodivergent traits I had that couldn’t be explained by my being autistic, but made sense given my learning style, but people tended to subsume all of these traits under the label of ‘autism’ just because they weren’t neurotypical. My parents and teachers would often treat me as though I were a list of diagnostic traits instead of a person, and would ascribe stereotypes based on those diagnostic traits that didn’t actually match my own experiences or my internal self-perceptions. Most gallingly, my parents actually told me they understood me more than I did! I was wary of that statement then and I think it was utter nonsense now. If they’d truly understood me, I wouldn’t have severed contact with them nearly twelve years ago.
I realised that I couldn’t attribute everything different about me to autism after going through something of a quarter-life crisis at the age of seventeen. I started rebuilding my self-concept to incorporate a more holistic interpretation of my cognition, though admittedly I was still struggling with internalised disablism and wondered over the course of two years whether I was Properly Autistic because I didn’t match the Asperger Syndrome stereotype. Some of this was because most of the literature I’d encountered on autism characterised it as a disability that primarily affected social interactions, even though social interactions were and are not what I find the most disabling, especially after the age of 14 or so. My social skills difficulties were contextual, not global. Compared to many of the accounts I read in books and on blogs online, I got off pretty easily socially. I’m not saying that social interaction was necessarily easy for me – it wasn’t – but it was easier if I was talking to people who understood what I was trying to tell them, which my parents frequently didn’t. They’d shut down if I tried to explain my reasoning for my behaviour and preferred superficial explanations that didn’t address the root problem. Somehow *I* was the one who was impaired for having complex interpretations of my behaviour, though, since they liked to pin anything they didn’t understand about me on the autism diagnosis. I remember arguing with my mother when I was 18 and trying to explain myself and having her tell me ‘You have Asperger Syndrome!’ as though it invalidated the content of my argument. My executive functioning issues are vastly more disabling; in fact, I find them the most disabling (and expensive) part of being autistic. I have a reasonably active social life and have an easier time making friends.
For a period in my mid- to late twenties after I became more involved in public disability advocacy, I moved back towards attributing all my atypical perceptions to my being autistic, even if I knew multiple autistic people who saw the world very differently from me. Much of this was from indirect peer pressure from late-diagnosed and self-diagnosed autistic people. I was using it as a crude, brute-force method to identify and categorise anything that seemed to separate me from the general public, even if *there was no direct evidence* that the experiences in question could actually be explained using an autism-centric framework. I also felt that I had to do this to be the Right Kind of disability advocate, even though I knew plenty of other autistic people who didn’t have the same Weird Brain Things as me; it didn’t help that I had internalised the idea that using other interpretations for it might suggest that I was somehow expressing some form of disablism for not using a framework that centred on disability. I just felt crazy and isolated during that period. It is painful to read back from blog posts and private journal entries from between 2011 and 2016 in which I explain aspects of my thinking as being part of being autistic when they’re not necessarily autistic traits in and of themselves.
I still think I’m autistic, of course, but I no longer feel comfortable treating it as though it is the sole explanation for my divergent thinking. More specifically, I think the diagnostic label is useful for me to identify specific supports for the issues that I find disabling, and it is politically useful as a framework to advocate for the rights of a group of people with somewhat related experiences who experience systemic marginalisation for their disability. This is different from internalised disablism or claiming that I don’t have a disability at all; it’s just that when I was growing up, I had a disability-centric narrative and identity imposed on me against my will. People who were diagnosed as teenagers and adults and encountered less pathologising narratives about autism when they found out about it are more likely to see a politicised disabled identity as something of a revelation. I won’t deny being disabled. I’m not a Shiny Aspie. There’s a difference, though, between denial and recognition of the complexity of one’s experiences.
Moving towards a more holistic way of interpreting my neurodivergence seems to be healthier for me. I can’t do to myself what people did to me when I was growing up.