It’s official. Or rather, it became official on a dark evening in late February. The Harley Street psychiatrist, slightly grainy over Skype, shuffled his papers, sighed a little and said “Look, we could go on and on, but it is obvious that you are autistic”.
A feeling that I always associated visually with melting silver metal spread across the top of my chest – it was relief. I was being told something that I had known for a few weeks, thanks to YouTube. I’d taken an “Are you Autistic? Twenty-five questions to ask yourself” quiz. If you asked me why I took that test, I honestly couldn’t tell you. Maybe I was intrigued, or a little bit bored on a winter’s evening. Whatever my reasons, I had ended up answered “yes” to twenty-two of those twenty-five questions.
Official descriptions of Autism are a bit dry, aren’t they? And of, course, they have to be. Every individual expresses their Autism a little bit differently; an official list of symptoms can’t get too personal. But what doesn’t come across is how it feels to be autistic. Google “symptoms of Autism” or something similar and you will find yourself on a variety of official pages, reading a series of baldly-stated bullet points. I find it difficult to recognise myself in their description. Lack of empathy, I read. “Well, that’s not me,” I thought. “I studied Psychology for years, I worked in mental health, people fascinate me because of their strangeness and unpredictability.” Abnormal Behavioural Interaction. “Well,” I thought, “we’re all a bit odd, aren’t we?” Oversensitivity to sensory stimuli such as taste and light. “Not really,” I thought, “I mean, I go to Italy on holiday, the light is really strong there. And I like hummus and stuff. I’m just a bit picky about the texture of some things.”
The quiz that I took on YouTube was thoughtful, fairly exhaustive and compiled by a mild-mannered autistic gentleman named Paul. With an air of piecing together a puzzle, I then began to watch video after video of autistic girls describing their experiences articulately and confidently. Some things they spoke of resonated with me as loudly as a clanging bell:
-Rehearsal. I honestly thought that I was the only person in the world that did this until I listened to people on the spectrum. I constantly rehearse upcoming social events and situations. I go to bed early, but can often be kept awake for an extra hour or two running through future events in my mind, imagining what the person I am meeting will say, how it will go, and formulating appropriate responses so that I am prepared.
-Distractibility. I could never understand why, in spite of being equipped with tunnel-vision and seemingly supernatural powers of absorption when a subject interests me, I can become derailed very easily when distracted. Once my focus is broken it is as though my mind starts skipping and I cannot regain that level of concentration.
-Private Mannerisms. There has always been a side to me that I have kept private: the side that talks to myself, makes high-pitched noises, flaps and claps my hands. The looks of horror that other people have given me when I have forgotten myself and exhibited these behaviours in public are burned into my memory.
-Imposter syndrome. I worry about not being believed when I talk about myself and always have done, to the point where I often blush or stammer when I talk about personal things and can see other people wondering whether I am telling the truth. “Tell me about yourself”, is my most dreaded demand.
-Telephone-phobia. I have never been able to speak on the phone. Even thinking about communicating with a disembodied voice, unsure whether there is a pause in the conversation or whether the line is bad, makes me shiver. My closest friend from university still laughs at the last thing I said before she set off on her year abroad: “Bye, have a great time, DON’T call me!”
Before this epiphany I had encountered Autism – most people have – but I had looked at it from the other side of the fence. My working life had begun in a psychiatric hospital, and there I had tried to communicate with the (always male) severely autistic inmates. I had tried to calm them down as they began moaning or pacing, or backed away as they kicked out or hit themselves. Sometime later I lived in a flat and the neighbour above me had an autistic son. On the first night I moved in he had a massive meltdown and punched an upstairs window. I had to pick my way around the shards of the glass the following morning when I left for work. That was what Autism was to me: it was male, sometimes violent, and it didn’t look you in the eye.
“I find it so difficult working with autistics,” I had sniffed to friends and family, “because how can you get through to someone with no empathy? It’s so dispiriting.” Little did I know that I valued empathy so highly and was uneasy at the lack of it because empathy was something I’d had to work so, so hard to develop myself.
Suddenly my definition of Autism had broadened immeasurably: it had broadened to include…. well, me. My mind simultaneously reeling and convinced that I had found an explanation of myself, I then took the AQ, the Autism Spectrum Quotient. This is the official method of measuring a person’s autistic tendencies, and was available online. My results came back: I had scored “highly” and it was suggested that I speak to a clinician. I obediently made an appointment to see a psychiatrist and had a cry afterwards. I had cried a bit in the build-up to our session, too. Now, it was all over.
I said goodnight to the psychiatrist. I flipped my laptop shut. I was autistic. It was proper now; an actual thing. I wanted to try the sound in my mouth, to say it. Loretta, my clingy little French bulldog, was dozing peacefully at my feet. She had been snoring gently for the entire consultation. “Loretta?” She turned and gazed up at me, befuddled and warm, dragging herself to wakefulness slowly. “Mama’s autistic,” I said. She blinked. “You have an autistic Mama,” I added, for good measure. The word felt pointed, uncomfortable. The tip of the t’s snagged, the “iss” sounded hostile, like the hiss of a snake. Words are not just verbal labels of objects to someone who is autistic. They are objects in themselves; things to be navigated, sometimes hurdles to wrap our reluctant mouths around.
Loretta blinked some more. It was late in the evening; I had taken the last appointment of the day and had been talking for an hour and six minutes. Clearly, her reproachful gaze told me, it was time to go to bed. I got up stiffly and gave my desk a last look to check that everything was in its proper order. The laptop has to face a certain way, my pile of notebooks had leaned and shifted a little – I put them straight again and went upstairs.
Some autistic people receive their diagnosis as children. Pursuing a diagnosis as an adult gives you a certain amount of agency in the whole thing which can be a blessing and a curse. This diagnosis was my decision; I had chosen to know. It was my choice, therefore my responsibility as to what I did next. I would have to see how I felt in the morning, and the morning after, and the morning after that, as I adjusted to life with a new label.
