Laura James on dealing with a diagnosis of autism as an adult, an exclusive extract from her powerful memoir Odd Girl Out.
I scan the Word file on my iPad: 2,432 words on my autism. Confirmation of the diagnosis I was given last week. Confirmation that I am now officially one of the 700,000 people in the UK diagnosed with autism. Confirmation that I am one of the 1 per cent. For the first time in my life I am part of something. I am no longer alone. There are millions of others like me around the world. I have never belonged before. Now, perhaps, I can belong.
I’m still unsure of exactly what the diagnosis means and not knowing everything about it – absolutely everything
– gnaws in my head. It is red, like danger. I think I’m pleased, but the words glowing from the screen in black and white – Autistic Spectrum Disorder: Adult Asperger’s
– pull at my stomach. I get up from the sunlounger and sit down at the edge of the pool, dangling my feet in the cool water.
I finally have some answers. Something to explain why I am the way I am. It is a relief, a vindication. I’m not mad, bad or sad – the terms some psychiatrists use to categorize patients. Rather, my brain is differently wired. My experience of the world is at odds with how most other people see it. As Morticia Addams once said: ‘What is normal for the spider is chaos for the fly.’
I’m not alone. There are others like me, people who understand how a label in a jumper or a seam on a sock can cause a feeling so distracting everything else fades into the background. They would understand how it is to take everything literally. As a child, I had a real problem with sayings such as ‘Has the cat got your tongue?’ The first time I heard it, I was so alarmed I had to check my tongue was indeed still in my mouth. I regarded cats with great suspicion for a long time afterwards, which was a shame as, generally, I liked them much more than humans.
Others with autism would understand how I can sit down and write a complicated feature article for a magazine or newspaper, but cannot get it together enough to get dressed and make myself breakfast each day. They would know what it’s like to be of above average intelligence, but never to have managed to pass an exam. To have been isolated and left behind at school. They would understand how if I have one thing in my diary I cannot do anything else. If I know I have a train to catch at noon, the hours between getting up and leaving for the station are rendered redundant.
These people (those now taking hold in my head, whom I want to meet, whom I need to know) would understand how getting a lovely surprise present is confusing and painful. They would know that all surprises – even those that I had been forewarned would be amazing – hurt, almost physically. A surprise is brutal. It comes without warning. It sparks the bad feelings.
A shadow falls over my outstretched legs. It’s Tim. He is dressed in pale blue swimming shorts and a white T-shirt.
‘Couldn’t do it?’ he asks, joining me at the poolside.
‘Do what?’ I wrinkle my nose as I often do when I ask a question.
‘You couldn’t relax enough to stay in bed.’
‘No, sorry.’ I put down my iPad and accept the cigarette Tim offers me.
‘Just thought it would help,’ he says, his head blocking out the sun. ‘It’s been crazy lately and you need to look after yourself by taking moments to relax whenever you can. We both do.’
I want to tell him that going to bed for no reason in the middle of the day is too weird for me to cope with. It’s fine if I’m ill or have, for some reason, been up all night. But having a nap feels wrong to me. Bedtime is around 10.30 p.m. and any other time makes me feel like I’m doing something strange.
Tim sits down next to me. ‘What are you reading?’
I hand him the iPad. He scans the psychiatrist’s report before giving it back to me.
‘You didn’t read it.’
I’m aware I sound harsh, so I playfully splash the water.
‘It’s too bright out here. Anyway, you told me at length what would be in the report. It’s all we’ve talked about for what seems like weeks. Sorry, but . . . I said it would define you and I didn’t want that . . . I just thought we were going to have some time off thinking about all of this.’
Outside of his work as a photographer – where he relishes creatively solving problems – Tim doesn’t like dealing with difficult issues. I look at him easing himself into the water until only his head and shoulders are above the surface and realize he must be struggling to reconcile his view of me with the
words written in the report.
I’m his wife of twenty years, the mother of his children, a colleague and friend, and now – all these years in and after a protracted period of ill health on my part – he finds out I’m autistic. It’s a subject that – like most not directly touched by it – he knows little about. He thinks Rain Man
. The Curious Incident
. The Rosie Project
He grew up in a time and place where problems were best swept under the carpet. If you don’t talk about something it will cease to be. I do feel sorry for him. I know I am obsessive and it’s probably torture for him to hear me go on about the same thing over and again.
He has already had enough and swims off to sit on some steps on the far side of the pool, half in the water, half out. He looks like a pink seal, reluctant to leave the water completely.
For much of my adult life I have been searching for answers to why I’m not like other people. Why I struggle with everyday life, why my body behaves differently, why my mind is never still. Having been endlessly misdiagnosed with everything from generalized anxiety to (and this is my personal favourite) ‘bad luck’, I guess I had just given up trying to find an answer.
That all changed when – completely by accident – I stumbled on the first of the three issues that affect my mind and body. The first of the unholy trinity of acronyms I now have after my name. EDS. POTS. ASD. (Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia and Autism Spectrum Disorder.)
Ehlers-Danlos syndrome is a group of rare, inherited conditions that affect connective tissue. I have type III, which means I’m hypermobile, my joints dislocate easily, my skin is super-soft and easily damaged, and I have serious digestive issues. Postural Orthostatic Tachycardia, which is often associated with EDS, is an abnormal response within the autonomic nervous system, the symptoms of which include a high and persistent increase in heart rate when standing.
I get up and go back to the lounger and Tim eventually swims over to join me. He dries himself off, lights another cigarette and settles back in the shade of the umbrella, listening to Arcade Fire on his phone. I admire his mindfulness. Like a Twelve Steps group member, he worries about only those things he has the power to change.
I’m just not built that way. I envy his quietness as I obsess about the structure of my brain, the pros and cons of genetic testing and why there is so little research linking autism and EDS. To me it stands to reason that if the glue holding your brain together isn’t working properly, then you’ll think and feel differently from others. The lack of data makes me feel dizzy and sort of agoraphobic, as if I’m in a vast sea and cannot catch sight of land.