by Tom Cutler
Odette was writing again. Was it me or was there the flicker of a smile on her lips? She looked up.
‘You know, Tom, people who report similar behaviours are not only exhausted by the constant performance you mention, it’s what causes much of their depression.’
She gave me a booklet: ‘Low mood — your self-help guide’. The title was printed in three separate type styles and three different colours. It was hard to take. At the foot was a cartoon blob-man in a hat, a jaunty question mark above his head, printed in yet another typeface. I took it away with me. It was still raining.
As the sessions progressed I seemed to be treading water. I read the sheets I was given: ‘Following your heart’, ‘Activating yourself’. There were picky arguments. I complained about the cup dispenser for the water cooler in the waiting room which was so badly designed that it dispensed three or five cups at a time. At the end of May I reported intense irritation at people wearing sunglasses, so that I could not tell whether I was being looked at.
My nightmares were continuing, and I kept waking in the early hours. Lea was being patient. Odette advised me to implement a ‘sleep hygiene’ process by sticking to a rigid routine. Bed at eleven thirty, no reading. Up at five thirty. The same every night. Miraculously, it seemed to work. I wasn’t waking early so often. As for everything else, it remained static.
In session five we were due to review progress, but a few days beforehand I got a message changing the time of the appointment. I hate changes to my routine. Hate them. There was nothing for it, however, so I made a note to turn up an hour later than usual.
When I arrived, the waiting room was empty. There was a newspaper on the table: ‘HACKER SUSPECT HAS NERD SYNDROME SAYS DOC.’
Odette appeared at the end of the passageway and we did the follow-her-up-to-the-door routine. We went in and I sat down.
‘Well, Tom, how do you think things are going?’
I sucked my teeth.
‘I don’t think it’s working,’ I said.
‘It’s not, is it!’
Odette looked at me long and hard, with her head on one side. Her initial chill had changed somehow. She seemed to have warmed to me.
‘You know what,’ she said, ‘I’ve been thinking about your first session, when you told me in great detail about your objections to the SunBurst website. When I listened to you then I wondered, “Have we got something else going on here?”’
I noticed a spider scaling the wall. It was struggling to make progress, the smoothness of the paint providing little purchase. While I was silently egging it on it fell back, being stopped in midair by a thread of invisible silk. In a twinkling it was off again, climbing towards its goal.
‘How do you mean, “something else”?’ I said.
‘Think of these points. You say you find social situations “taxing”: you have taught yourself how to fit in but you feel as if you are always pretending — people find you aloof; you get a sensory overload in busy shopping centres; and you have a special interest in road signs — in one session you talked at some length about the London Tube Map —’
‘It’s a diagram, really, not a map,’ I said.
‘There! You’re a details man and a rules man: definitions, commas, errors, corrections — didactic interruptions. Now taken together, along with some other peculiarities, I think all this might be pointing to something.’
I stiffened. Was I being primed for something nasty?
‘I’m wondering, Tom,’ said Odette, ‘whether you might be on the autism spectrum. At the high-functioning end. Asperger’s syndrome.’
‘Balls!’ I exclaimed, without thinking.
I knew that people with Asperger’s syndrome could be bluntly spoken but anyone might have responded like this.
‘No,’ I insisted, ‘I’ve worked with Asperger’s people and I’ve read about it. I’m not like that. I’m not a geek. Nothing against geeks, I like them, but I’ve got a sense of irony, I get jokes. That’s not me.’ I felt as if I’d been struck in the face by a leather belt.
Odette gave me an encouraging smile. She seemed completely relaxed.
‘You told me you have a degree in Fine Art. Now think about it. You could have been interested in Classical sculpture, or abstract expressionism, or the Dadaists. But no, your special interest is the design of British road signs. This is a very uncommon and particular interest. Transport signs are systematic, and the autistic mind loves systems.’
‘But I’m coming at it from a design point of view. Aesthetics,’ I said weakly.
I felt as if I was sinking — up to my waist in sand. Her remarks had bothered me. I had never thought about it before, but now I stood back for a moment this enthusiasm of mine did sound like a typically autistic subject.
The spider had reached a light switch and to continue had to decide whether to go left or right.
Odette drew a line. ‘The Asperger’s people you’ve met might be down here on the spectrum. Further end. And you might be up here at the more subtle, abler end. A bit harder to spot. I think this really might explain your longstanding anguish.’
I made my just-smelt-a-cesspit face.
‘Have a think about it, Tom. Go away and read about it and come back and tell me what you think next time. That’s due to be our final session.’
My head was a blur. Surely this was nonsense. I took a left out of the medical centre. I always turn left if there is a choice. It is a rule I rigidly stick to. Coming out of an underpass I will always take the left exit even if I know I will have to cross the road outside to get to where I want to be. Like many of my other rules I keep this one to myself but I dislike varying it. Was this a bit odd? Was it a bit autistic? I made my way home as if I’d just been told that I might have a chronic but interesting tropical disease.
There was a lot to think about. First the panic attack, then the anxiety diagnosis, and now this. Was Odette making wild guesses or did she have something? Over the past few weeks I had become less sceptical of some of the things she said. After all, I was sleeping better.
I have an interest in Sherlock Holmes; I’ve read all sixty stories in the canon many times, and I thought then of one of my favourite Holmes quotations: ‘It is an old maxim of mine that when you have excluded the impossible, whatever remains, however improbable, must be the truth.’ If I could eliminate the impossible perhaps this Asperger’s syndrome idea might prove to be the truth. If I looked at my difficulties from this new point of view might it explain a few things? Could it explain everything?
I felt I had been given a treasure map, but there were holes in it. I needed to fill them in. I would start by finding out all I could about autism and Asperger’s syndrome, and we would go from there. It could be an adventure.
I put my key in the lock. There would be a lot to report back on next week. But first I must tell Lea.
I picked up the phone.
Chapter 2:
Signals not in use
Asperger’s syndrome
(also Asperger syndrome)
NOUN
A developmental disorder related to autism and characterized by awkwardness in social interaction, pedantry in speech, and preoccupation with very narrow interests.
Origin: Named after Hans Asperger (1906–80), the Austrian psychiatrist who described the condition in 1944.
OXFORD ONLINE DICTIONARY
On a bare strip of coastal plain hard up against the chalk skirt of the South Downs National Park nestles the sleepy seaside neighbourhood of Lancing.
At low tide, walkers in quilted windcheaters exercise their dogs along the wet sand, swinging in their fists small plastic bags of something. Here and there, like a new tooth in an old mouth, a piece of contemporary architecture glistens heroically between the beach huts, rotting groynes, and guano-splotched nursing homes. But most famous of the town’s landmarks is the gig
antic neo-Gothic chapel of Lancing College.
I rise from my train seat as the chapel slides past us on its hilltop, away to the right, buttoning my jacket against the late spring breeze. I am on my way to an appointment with one of the country’s most notable experts on Asperger’s syndrome. I’m hoping she will be able to tell me whether I’ve got it or whether something else is going on. If I can discover, as I hope, a reason for my years of oddball confusion and give the thing a name, perhaps the mists will clear.
I had been itching for a formal assessment from a specialist ever since Odette Pinard’s canny guess that I might be on the autistic spectrum. I use the word ‘assessment’ rather than ‘diagnosis’ because it sounds less medical: the difference between having something identified that is not an illness but which is causing you problems, and being pronounced diseased, disordered, or dysfunctional.
I had been reading as much as I could about Asperger’s syndrome, which is a mysterious and complicated condition. I remember sitting down on the first day and flipping through a basic primer. After a bit, I started to laugh. It was the laughter of recognition. This was a stark reflection of the essential me: the solitary nature; the aloofness, the dislike of change, the special interests, my inability to chat, my pedantry, my sensory peculiarities, my suffering in company.
When I had mentioned to Odette at our last session that I was planning to ask my doctor to refer me to an expert she had shaken her head. ‘Attempting to get a positive identification that way,’ she said, ‘will be like trying to squeeze champagne out of a walnut. And you’ll be waiting about two years for an appointment.’ Two years was certainly no good for me. My need to understand what had been making me feel so out of sync for so long was pressing. I wanted to get on with it.
Lea had been pretty non-committal about the suggestion that I might have Asperger’s and my decision to look for an expert opinion, but I was on tenterhooks. At last, after years of bemusement, I could see an answer emerging like the shadow of a lifeboat through the fog. Things were coming into focus and all the strange feelings and faux pas over the years were beginning to make sense. Still, I could hardly expect my wife to deck the place in bunting and throw a party.
We are drawing into the station. This train is a new one, with a foul colour-scheme and automatic toilet-doors that open of their own accord while people are in there. As we pull alongside the platform I look over my shoulder for my hat. As I always must.
The ticket barrier is one of a sort I have seen before, and I have very little difficulty with it: a minor victory this, because I often get in a muddle with automatic barriers, card payment gadgets, and ticket machines. Anything more than the simplest un-smart phone is beyond me.
On a ticket machine I recently counted nineteen separate places that I had to pay attention to before I could select, pay for, and collect my ticket. I cannot ‘block out’ irrelevant information and find myself concentrating on all of it, including the details of the manufacturer stamped on the metal, the corrosion on the screws, the texture of the brushed steel, and the temperature and feel of the various bits as I touch them. Together with the generally poor ergonomic design, the maddening instructions, and the incomprehensible navigation, all this jangling overstimulation causes my anxiety to build to such a degree that I cannot take in any more information. I cease to function properly and become enraged, often with a queue breathing down my neck. Onlookers generally see this as an infantile overreaction. Outbursts of this kind, which are common among autistic people, can be so intense that they are known as ‘meltdowns’, a nickname borrowed from the dictionary of nuclear disasters.
All the same, despite the abolition of helpful bus conductors and railway guards, never mind all the train lateness and cancellation, the unexpected timetable changes, and the uncomfortable closeness of other passengers, public transport it is still easier for me than driving. I got rid of the car years ago having become exhausted by the plethora of information I had to process while behind the wheel: other vehicles, traffic signs, commercial signs, unexpected road works, changing lanes, changing gears, changing weather, changing road surfaces, tarmac smells, speed bumps, speed limits, tight seatbelts, changing down without the brake, nattering passengers, bleeping seatbelt warnings, sudden diversions, ticking indicators, plastic smells, petrol smells, petrol stations, boys on bikes, air conditioning, honking and hooting, satnav, mirror-signal-manoeuvre, traffic cones, screen wash, people giving you the finger, people disobeying the rules — which are there for a reason — people waving you through, pedestrians, potholes, one-way streets, windscreen wipers, plus my pressing need to turn left, which was creating some interesting but unnecessarily long journeys. ‘You need to relax a bit,’ Lea had told me for the umpteenth time. ‘Why can’t you be normal for once in your life?’
As I come out of the station, I pause for a moment to watch a departing train. Like traction engines and pumping stations, trains are a frequent preoccupation for autistics. I look over at the dilapidated frontage of an abandoned Art Deco cinema, built in 1940: the year Alfred Hitchcock made Rebecca, his film featuring the indescribably creepy housekeeper, Mrs Danvers. L U X O R it says in flaking letters. The cinema is to be converted into ‘luxury apartments’, or what used to be called small flats.
The gates of the level crossing are closed so I climb the steps of the old railway bridge. Halfway over I notice four steel plates welded to the green superstructure, each studded with twelve rivets. These rivets appear to me as a pattern, like the dots on a domino. I run my hand over the bumps as I pass. They are cold but not unfriendly. I like bridges. They are built to systematic physical rules that make sense. They don’t confuse me. They are solitary, as I am. They keep still.
Under my arm is a folder containing the pages of notes I have put together while reading up on autism, of which Asperger’s syndrome seems to be a subset as mysterious as autism itself. It is a fascinating subject, but too often larded with long words and unhelpful jargon. The American stuff I have seen is especially rich in this sort of thing.
Take the following terms plucked at random from various books, magazines, and websites: assistive and augmentative communications (AAC), broader autistic phenotype, weak central coherence, applied behavioural analysis (ABA), assistive technology, pervasive developmental disorder — not otherwise specified (PDD — NOS). None of these names tells you what it means, as earache, walking stick, and yellow fever tell you what they mean. ‘Assistive technology’ is just helpful equipment; why dress it up in such gaudy clothes? And how anybody could accept without laughing a diagnosis of something named ‘pervasive developmental disorder — not otherwise specified’ I don’t know.
If I wanted to get my head around this subject I would have to translate this loopy slang into a self-explanatory vocabulary that looked like English, instead of something off the home page of the Intercontinental Confederation for the Promulgation of Obscurantist Acronymicality and Latinate Sesquipedalianism (ICPOALS).
One of my first troubles was not, though, the daft initialisms and fancy words but the simple lack of a noun for a person with Asperger’s syndrome. If you have asthma you can be, ‘an asthmatic’ or, adjectivally, just ‘asthmatic’, but this isn’t possible for a person with Asperger’s syndrome. People have had a stab at creating a suitable word, with ‘Aspie’ being the front runner. But this sounds coquettish to me. It would have been possible to keep referring to ‘a person/people with Asperger’s syndrome’, though that’s quite a mouthful, and one which might annoy those who dislike what’s known as ‘person-first’ language.
Person-first language is a cart-before-the-horse linguistic device that results in such cumbersome formations as ‘a person with sight loss’ and ‘a person with Asperger’s syndrome’. Person-first language insists that diabetics must no longer be called ‘diabetics’, they must be ‘people with diabetes’; the bald are not to be called ‘the bald’ but ‘men with hair loss’.
In his 1999 essay ‘Why I dislike “person-first” language’, Jim Sinclair, who is autistic, makes the important point that autism is not something you have, like an injury or disease, so much as the fundamental essence of who you are. So, ‘a person with autism’ does not even make sense.
There is a never-to-be-settled debate grumbling away about all of this, a debate often carried on, rather incongruously, by people who are not themselves autistic. The autistic, bald, and blind presumably have bigger fish to fry. Anyway, if a woman with hearing loss wants to call herself deaf that’s fine by me. It is shorter, more vigorous, and less fuzzy. Nobody should be ashamed to be called autistic, nor to be autistic, any more than they should be ashamed to be asthmatic. I suppose that if one of my friends were a necrophiliac he might not want to be described by that term in the pub, but calling him ‘a person with necrophilia’ isn’t going to help. I use the term ‘autistic’ without demur.
As for the lack of a noun for people with Asperger’s syndrome my answer has been to create my own: Asperger (singular), Aspergers (plural). For example: ‘There is no such thing as a typical Asperger’ and ‘Aspergers find social situations confusing’.