Wednesday 22nd March 2023, 16:15
I feel sick to my stomach. I’m not worried about them confirming what I’ve suspected for the last 5 years or so – I can deal with that. What I’m not prepared for is being told – after 2 full years of research, reading, introspection and questioning (and around 11 of wondering) – that I’m mistaken. Of having no explanation for any of this other than being a pathetic, overly sensitive, lazy freak who just doesn’t try hard enough. Of losing the one community in which I might find some sense of belonging. I am so utterly unprepared for that – HOW can I prepare for that?
January 2022
I finish ‘Fingers in the Sparkle Jar’ by Chris Packham, which I have been reading over the Christmas holidays. I can relate to so many of his experiences, and not just those involving a lifelong love of – and all-encompassing interest in – nature. I also heavily relate to his experiences of never really fitting in or feeling understood by anyone, of finding animals easier to understand than people, of being horrifically bullied, and of finding solace in punk music as a teenager. And I related particularly to the sections of the book about mental health and feeling suicidal.
I had previously watched his 2017 documentary ‘Asperger’s and Me’ and related to many of the experiences (sensory and otherwise) he described, but had simply put this down to being a fellow naturalist at the time. I didn’t relate to some of the other things he spoke about (for example, his sister’s assertion that he lacks empathy for other people, and him tasting tadpoles as a sensory experience as young boy, which I frankly found very odd). I had therefore discounted it at the time. (In Chris Packham’s defence, I’ve often seen him not know how to react to other people’s distress in documentaries, but I’ve yet to see evidence of him lacking affective empathy. He certainly seems to have empathy for other autistic people and for animals).
March 2011
I am assessed for the first time. They diagnose me with autism spectrum disorder. My parents and I disagree with the diagnosis for a number of reasons (perhaps a whole post in itself), including our own misconceptions, ignorance and ableism. They seem to twist a lot of what my parents and I say, and I wonder years later if they are just trying to shoehorn me into criteria I don’t fully fit because I clearly need the support. Except that real support does not seem to be forthcoming. I find it to be a thoroughly dehumanising experience – I am treated like a toddler throughout. The assessors don’t appear to consider my feelings at any stage of the process, or to even consider that I might have the same range of emotions as everyone else.
At one point, we talk about how I have been messaging some girls from my year at high school through Facebook messenger, as I find this easier than face-to-face interactions. I mention that they hadn’t responded to my most recent message yet. One of the assessors responds coldly “Maybe they just don’t like you”. I answer rather stoically “I know…”, though I am extremely upset by his comment. I have been worrying constantly about this myself and it further plays on my insecurities. It is one of the few times people have been nice to me in high school and it doesn’t take much to convince me that none of them actually like me at all, and they’re talking to me purely out of pity. I have been horrifically bullied all throughout high school and I am currently suicidally depressed. He does not seem to care one iota as to the impact this comment may have on me. But, as I learn from the assessment team, it is of course autistic people who are profoundly lacking in empathy.
My parents and I seek out a second assessment.
December 2011
I am assessed for the second time. I again find it a thoroughly dehumanising experience. Part of the clinical report that I’m eventually able to read only years later suggests that many of my responses are indicative of ASD. However, the fact that I miss family members when we are apart, am a sympathetic person, would like to have close friends, and try to be helpful and supportive when people tell me their personal problems, all are apparently inconsistent with that diagnosis. Autistic people are asocial, unfeeling robots, it would appear.
We briefly talk during the assessment sessions about my depression when she brings it up. I mention that it has been particularly bad lately and that I’ve been self-injuring. “Oh, don’t do that”, she replies. That’s really helpful, thanks – I never would have thought of that myself, I think sarcastically, which autistic people are also apparently incapable of. Is it really any wonder that I’ve pretty much given up on trying to talk to people in my life about my mental health, when this is par for the course as far as responses go?
February 2012
My mum and I receive the results of my second assessment – I don’t quite fit the ‘triad of impairments’* but appear to have many of the same social and communicative difficulties that people with Asperger’s syndrome (as it was known then) struggle with. As was the case for the first assessment, she finds no evidence of ‘stereotyped behaviours’ or ‘restricted interests’ (more on that another time). None of the assessors for either assessment seem to be aware of the concept of autistic masking, or of anything other than a stereotypical, textbook presentation of autism.
*Autistic people seem to comprise entirely of a collection of deficits, or at least you would certainly think so if you only ever listened to the way clinicians talk about them
The current assessor also says that I could fit the presentation of atypical autism or Pervasive Developmental Disorder not otherwise specified (PDD-NOS) but suggests that my presentation may match Social Communication Disorder – a new diagnosis at the time. I don’t feel it fits. The assessor recommends that I am given the same accommodations at university as if I had been diagnosed with Asperger’s, and that I consider that I may be autistic but not fit the current diagnostic criteria. She recommends that I apply for Disabled Students’ Allowance (DSA), which will allow me to have a study mentor and record lectures so I can take more detailed notes later.
I’m told that my birth (by ventouse after attempted forceps) could have “damaged the social part” of my brain by the assessor. I am not sure what to make of this at the time, and I’m still not entirely sure (I lean more towards it being BS these days as I’ve found zero scientific evidence for this). It doesn’t seem particularly feasible to me that trauma to the brain resulting from forceps would damage such a small and specific area to result in such a specific set of difficulties without also causing more global difficulties (intellectual disability, physical disability, wider developmental delay rather than being advanced in some areas, etc). We know birth complications are connected, but correlation doesn’t apply causation. Nonetheless, it plays on my mind a lot from then on, as it clearly does on my mum’s mind too. Even if it could be shown that it was indeed the cause, I ask myself what the feasible alternative would have been. Being born with further complications? Being stillborn? No matter how challenging my life may have been at times, my life taken overall hasn’t been a fate worse than death. (Or at least, in times when I’ve felt that death would be preferrable, it’s been largely due to loneliness and lack of understanding from society at large). I’m still glad that I got the chance to be here and to have what positive experiences I have had. My life, and the lives of others like me, are not worth less than anyone else’s.
Wednesday 22nd March 2023, 16:25
C embraces and kisses me. “I love you no matter what”, he tells me. I find great comfort in this – that even if I’m wrong, we can plan what to do next and find a way forward together.
I leave the room and wait the final couple of minutes in front of my laptop for the appointment to begin. 16:30 – I log into the Zoom call after some technical difficulties. “I’m just going to cut to chase”, he says, once we’re both sure we can hear each other. “We’ve found that you do indeed meet the criteria for a diagnosis of autism. It’s been quite a clear-cut case, to be honest with you. The lived experiences you’ve shared with us, your assessment results, and the information provided by your mum, at every stage of the process, are all highly consistent with our experiences of autistic adults”. I instantly feel the biggest wave of overwhelming relief. He tells me that while it’s not obvious on first meeting and interacting with me that I’m autistic, it did become strikingly obvious to them when speaking about my experiences in depth. I recognise that these are people who have many years of experience and expertise between them in working with autistic adults and young people. I can imagine that for someone who isn’t clued up on how autism presents in high-masking autistic people (which I imagine is at least 99% of the general population), it quite probably isn’t ever apparent, which is both a blessing (and a privilege) and curse.
The assessor says he doesn’t want to flood me with too much information as it can be a lot to take in, but that he’ll pass me on the details of the late diagnosis group they run. It’s too early for me to have more than a couple of questions so our call is fairly short. I mention to him that I was focusing so hard on making the “correct” amount of eye contact at our last assessment appointment that I didn’t take in anything he said about when I would receive the brief clinical report they provide. I point out I probably should’ve seen that as a clear sign in hindsight, which amuses him. I log off and sit at my desk for a while, taking it all in.
I head through and tell C after collecting myself. He doesn’t seem surprised and pulls me into a tight hug.
I am feeling a whole lot of emotions all at once and need to get out of the house and get some fresh air to make myself feel better. I will overanalyse myself to pieces if I just sit there with all of this. Going for a run will release some endorphins and help me try to process this, so that’s the first thing I do after my diagnosis.
I am listening to a heavier metal song as I run. It is not a happy or upbeat song, to put it mildly. I am running on pure emotion and adrenaline. A lot of people can’t stand this genre of music – it’s too harsh, too much, especially when the lyrics are screamed or growled. Maybe that’s why I like it so much – I’ve always felt like I’m too much for other people, and I often seem to feel things (especially negative emotions) more intensely than other people. I find metal music incredibly cathartic, calming and grounding. It helps me to process negative emotions and there’s something about the rapid and complex drumming that scratches an itch in my brain, especially rapid double bass drumming. It makes me feel completely alive – it’s like a very positive form of sensory overload for me.
This genre of music isn’t about partying and having a great time with friends or having an upbeat rhythm to dance to – though there is just as much of a place for those things too. But when I’m dealing with a lot of negative emotions, I don’t want to listen to a happy song as I find it too disingenuous. I want something earthy, raw, honest and real. Metal music has helped me through some of the toughest times in my life. It takes me by the hand and whispers (or perhaps screams/ growls?) “Take my hand and we can get through hell together. We will weather this storm together. You will get through this alive and you will be okay”. And as I race home in the sunset, my heart pounding and endorphins flowing, I know I will be.
Differently Human 
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