An autistic, speaking: learning I was Autisitic.

Jamie writes "An autistic, speaking: learning I was Autisitic" on Medium.

content warning for ableism and eating disorders mention

“Do you ever have problems being able to tell what people are thinking by their facial expressions?”

Every time I went to see a different mental health professional, I was inevitably asked this question. The first time, I was fifteen and having regular appointments with a clinical psychologist for depression and an eating disorder. I knew what they were getting at when they asked it. “No”, I’d reply, a little annoyed. I wasn’t autistic. I thought of myself as intelligent and perceptive and not what I understood autism to be: the stereotype of a small boy who talks mechanically and lacks empathy and was obsessed with trains. But I didn’t make friends easily and I was stubborn as heck. I could see where they were coming from.

I struggled with anxiety since childhood that finally began to lift for short periods in my early 20s. It still felt like anxious was my default — it still does — but I was learning what it was like to be not-anxious. I still couldn’t keep up in social situations even when I felt comfortable in them. It wasn’t fear that was stopping me, but rather not having the tools needed (tone detector, body language radar, turn-taking indicator, appropriateness meter, to name a few) to thrive in social situations. I still knew, however, that a smile meant ‘happy’ and crying meant ‘sad’.

In the interim, I’d met a couple of women with Asperger Syndrome who didn’t have the outward traits I’d held in my mind as markers of autism. And I started mindfulness-based cognitive therapy. During one session, I mentioned I have real trouble recognising faces, which led to the same question again: “are you able to tell what people are feeling when you look at them?” Again my answer was ‘yes’, but not so forcefully this time.

The kicker comes when I start my first permanent job: after a couple of team meetings, my too-brash boss would ask to speak to me, and inform me that what I said had offended everyone in the room, laying out the implicature of the word choices I’d made. I asked how she knew, and she said she could tell by the look on everyone’s face.

In the Equality & Diversity training for my new job, I learnt more about Asperger Syndrome. Part of the course had an interview with a teenage boy with Asperger Syndrome that could have been an interview with me. He spoke of having emotions and empathy which I’d previously believed autistic people couldn’t have and which I have in insatiable truckloads. I read an article that states that while some autistic people have less empathy, thathyperempathy is also a common autistic trait. Could autism actually be why I have always found life such a struggle? Why I’ve always felt on the periphery of life, why I’ve been consistently rejected by my peers, and why I’ve been so anxious and sensitive and depressed?

During my next psychiatrist appointment, I mentioned the possibility of my having Asperger Syndrome and after an hour-and-a-half of talking about traits, he said it was very likely. I was referred to the Neurobehavioural clinic for a formal diagnosis.

In the waiting time that exceeded a year, autism became my special interest. I learnt that autistic women and girls frequently aren’t diagnosed till adulthood because we generally present differently from autistic men and boys, possibly due to the difference in how boys & girls are socialised. Smaller issues I’d had, such as the eating disorder, the insufferable preoccupation with rules, the obsessions with cats and Coronation Street, piled up as ever-growing evidence of my place on the spectrum. Finding lists online of traits common in autistic women and checking them off one by one felt like I was reframing my life. 200 miles away, my mum was doing her research too, and realising that the typical development of autistic girls reflected the way I grew up.

Two appointments and an interview with my mum to get my developmental history later, I had my diagnosis: a post-DSM 5 label of Autism Spectrum Disorder, Level 1. I take issue with the ‘disorder’ bit, too, because it’s only a ‘disorder’ in that my brain isn’t wired like the majority of the population. It doesn’t hurt and it doesn’t need a cure. It’s a neurological difference, more akin to being gay than being ill. And you know what, it was a relief to know there was a legitimate reason my brain worked differently, and that I wasn’tbroken. The benefit of being aware that I legitimately struggle with social convention is that I can check myself and apologise with grace and move on rather than getting defensive and feeling like a monster for messing up.

After my diagnosis I began to dip my toe into online autistic communities and started meeting other autistic people at a local support group. It took a few years, but slowly, autism went from feeling like a frame through which my past made sense to an integral part of me. For the first time the way my brain worked wasn’t something that ostracised me or placed me as a spectator of social events, but something that made me part of a brilliant, creative, accepting community. Knowing there were people out there that would accept me made me brave enough to start speaking to more people, on the offchance that interacting with me wouldn’t be too objectionable. And occasionally, even I believe it’s not.

One of the reasons I’ve kept relatively quiet about my autism till now is because of the lack of understanding about what autism is. I didn’t see autism in myself because I only knew the stereotype and because of this my mental health and self-esteem suffered enormously. Immediately after my diagnosis I received a six-page report from the NHS listing my autistic traits and how they cause me problems in a nonautistic world, and there was very little positive in there. I realise this is to make it clear to professionals when I need support, but the same thing that disables me also enables me to see things from a unique angle, to encourage my talents, and to have a strong sense of justice and empathy. Sadly, not everyone celebrates the positive. When I disclosed to the aforementioned boss that I’d had this diagnosis, they kept picking up on autistic traits that they said meant I couldn’t fulfil my job description, despite my performance being evidence to the contrary. After a battle, I was put on a contract with fewer responsibilities and lower pay. I took a pay cut for being autistic.

On the other hand, I don’t want to be met with disbelief & invalidation because I don’t fit a stereotype. I’m scared of “you’re not autistic”, “surely you mean Asperger’s not autism” and “but you seem normal” because I’d feel compelled to justify myself. I shouldn’t have to lay down my entire developmental history for everyone to scrutinise in order to be accepted. There are already many ways in which I struggle in a non-autistic world and I don’t want being invalidated to be one of them.

Part of me is glad I wasn’t diagnosed as a child when I read about treatmentsgiven to autistic children to make them seem less autistic and more like their peers. I see parents of autistic children posting videos of their children having meltdowns and fellow non-autistics cooing along about how awful autism is. People frequently tell self-advocating autistic people that they can’t be autistic because they don’t appear to be suffering and that by calling ourselves autistic we’re trivialising the ‘disorder’. But these people know nothing of what an autistic adult has been through, or how their children will be as adults (aside from resentful). The same people are happy to include us as autistic in their statistics to that prove that there’s an ever-increasing autism ‘epidemic’, when the truth is, autism diagnoses are increasing because 1) professionals are getting better at understanding what autism is and 2) the diagnosis criteria have changed with each revision of the diagnostic manual, and in any case, if autism is increasing in the population, that’d be something I’d celebrate. An autistic world would be kinder, gentler and fairer.

The thing I’ve suffered from most isn’t autism, but not knowing I had it; that there was something different about how my brain was wired. I struggled with my senses and socialising when no one else seemed to which made me angry with myself and was the trigger for a lot of mental health issues. Even before my diagnosis I didn’t suffer from my traits; I suffered from people not being aware, accepting or empathetic of people whose perception of the world is oblique from their own.

On 1st November 2010 a campaign called “Communication Shutdown” was launched by non-autistic people to raise awareness of the communication struggles of autistic people. Their method was to disappear from social media for a day which I find ironic because, like many autistic people, I find social media and text-based communication way easier than using my speaking voice. The autistic community has reclaimed 1st November every year since as “Autistics Speaking Day” and this is my first time participating.