by Laura James
I feel lucky to have been diagnosed at a time when there is much more awareness. It’s important to differentiate, however, between awareness and understanding. Many people dismiss autistic women, simply because they do not fit the stereotypical version of autism that society is used to seeing.
I mention this to Steve Silberman, who laughs. ‘Oh yeah and, knowing neurotypicals, they’ll say you don’t seem autistic and expect you to take it as a compliment. I don’t mean to equate these things, but I’m gay and, when I was growing up, people would often say to me when I came out to them, well, you don’t seem gay to me and it’s a rather bitter compliment to absorb.’
Whenever I thought about autism before my diagnosis, I really would imagine the geeky guy from IT who wouldn’t get jokes or be able to hold a conversation. Since my diagnosis, though, I have encountered hundreds of autistic people and every one is as different as we would expect neurotypical people to be.
Before I became interested in the subject, I believed that the spectrum meant that at one end there were the very autistic people; at the other the mildly autistic. Many lovely, well-meaning neurotypical people find the idea of autism really tricky to grasp. They think, because of my job, marriage and children, that I am ‘only a little bit autistic’. ‘You’re obviously very low on the spectrum’ is something else I hear a lot.
That the spectrum is linear couldn’t be further from the truth. To get a more accurate perspective I met Dr Judith Gould at the Lorna Wing Centre for Autism. Judith is a chartered consultant clinical psychologist with more than forty years’ experience. She specializes in autism spectrum disorders and learning disabilities. In the 1970s, with the late Dr Lorna Wing, Judith came up with the term autism spectrum.
Judith believes the key point to understand is that autism is a spectrum not because it is linear but because any factor can be present at any point. She said: ‘[In our study] we saw the classic autistic aloof person with repetitive rituals and elaborate routines. But we also saw children with aspects of social difficulties, communication difficulties and imagination difficulties who didn’t fit in with [earlier] precise criteria.
‘These traits tended to be seen together, but you could have anything on the dimension. Anything on the communication dimension, anything on the imagination dimension and so on. At first we called it the autism continuum. Continuum implied severity from high to low but that’s not what we meant. The spectrum would look like a rainbow because anything can happen at any point. The colours merge.
‘In terms of communication, people can come anywhere on the spectrum. There are those who only communicate their needs and there are those who don’t realize the person they are with may be getting bored when they talk about special interests. Then you’ve got those with a highly intellectual, formal, little professor communication style.
‘Then there is imagination. You’ve got those children or adults with no imaginative activities. No play. Then there are those who copy – and they’re often the girls. So a child is playing with a doll, bathing a doll, and another little girl is sitting beside her, copying. But what she does is put the head of the doll in the water. So the symbolic baby isn’t there, but the actions look alike.
‘One of my favourite examples comes from the early days. I was assessing a child and Lorna was taking the developmental history. The boy set up this incredible scene with a train set, some Play-Doh and little characters he made out of Lego people. I reported back to his mother that he had shown amazing imaginative play, but when I described what he had done she pointed out he had, in fact, created an exact replica of what he had seen on one of his Thomas the Tank Engine DVDs. So my message here, which we give to psychologists, is if you’re seeing a child in a one-to-one situation and you’re observing play, don’t necessarily accept that it is real imaginative play.
‘Then you’ve got those with imaginative play that is repetitive and stereotyped. Right up the top here we have those people who create their own fantasy worlds with amazing creativity but it is not social creativity. So some people are very creative, but when it comes to understanding consequences of actions, they keep repeating the same mistakes and getting into trouble.
‘Unfortunately, I don’t think people can easily recognize repetitive rigidity behaviour in very bright people. They’ve got fascinating interests they can talk to you about and they can create music, art, science, IT and so on. They’re brilliant. So, if you don’t ask the right questions, you’ll say they’re flexible.’
Since I got my diagnosis, I can’t help but ask the why am I autistic question. Dr Judith Gould stresses that it is a combination of genes and environment. She told me: ‘There are lots of autisms. We now know it is a genetic condition. So, when assessing people, I ask about other family members. Often they won’t know the person is autistic so I will ask if there’s anyone in the family who may be very successful but is rather unusual or different. So, in answer to your question, we don’t really know why you are autistic, but we do know that there is a high genetic component. However, it is not a straightforward component.’
‘I’ve read in so many places that it’s genetic and environmental,’ I said, ‘but I’m not sure I understand exactly what environmental means in this context?’
‘Well, I think it means you have the predisposition to behave in the way we’ve described the autistic pattern of behaviour to be, but your environment will also impact on that. Whether you are in a very structured environment. Whether people are aware and recognize your differences and support you; then, maybe, you may not ever need to have a diagnosis.
‘In my clinical experience, most people on the autism spectrum have sensory issues. Either hyper- or hypo-sensitive. If you’re in an environment that impacts in a sensory way and makes you overloaded, you will respond and make it more obvious that there is a difficulty. Sensory issues will depend very much on where you’re brought up and how knowledgeable people are as to how your symptoms will develop. But essentially the autism will be there.’
On an intellectual level, this makes perfect sense. I was always going to be autistic and – unless I lived in an environment that didn’t impact on me at all – it was always going to be a major factor in my life.
My diagnosis helped me make sense of so many things in my life, including my inflexibility and sensory issues, so it has been hugely useful for me. I remember, though, asking Dr Kajee whether everyone feels positively about being diagnosed.
She told me: ‘I think it depends on the individual. One of the questions in our diagnostic interviews is why do you want the diagnosis and how do you feel it will help you? So I always try when I’m seeing somebody to get that sense from them.
‘Some people like labels, some people don’t and I think it depends on where you are in your life and how you feel. I know you found it immensely helpful because it helped you place a lot of things into context. I suppose you wouldn’t really understand why some people wouldn’t want a diagnosis. It would completely befuddle you because it has been positive for you. You wouldn’t be able to see how it could be negative for someone else.
‘I guess some people feel they don’t want to be known as the label. They come from a different perspective and just feel they don’t want to know. They don’t want to be categorized. They’d rather be seen as odd or eccentric or different. But most people who come to see me, on some level want that clarity, that peace of mind.’
Tim and I are sitting in the garden. I’m reading a paper on autism; he’s halfway through the crossword. We have no plans. The sun is warm and usually at this time of year we would be thinking about a holiday. This year we’re not. Money is tighter than usual and I can’t contemplate going away when the time left with the children is so limited.
‘We could find somewhere cheap to go,’ Tim says, a wheedling note creeping into his voice.
I thought the holiday conversation was over and I wasn’t planning on talking about it now. I tell him I want to do some more research into
autism. I say I’m planning to write more on the subject and maybe it would be a good time to do it over the next month or so when things look as if they will be quieter.
‘Why can’t you just accept what is?’ he says later. ‘You did say that once you had a firm diagnosis you would stop allowing it to dominate your life.’
Irritation is creasing his brow. Washing-up is piled high in the sink and I feel guilty that I’m leaving him to take care of the domestic stuff. I look at the wrinkles on his forehead and wonder how many of them I have put there. He is an idealist, an optimist. He wants a life filled with excitement and contentment. He cannot see the two are as incompatible as oil and water.
He wants parts of me, but not all of me. He cannot understand, even after twenty years of marriage, that I am not going to change. I am a realist. I can take the good parts of someone and ignore the rest. I don’t think I get as bound up in relationships as non-autistic people. If I get irritated by something I either remove myself from the situation or politely raise the subject.
I don’t do drama. I can’t have a screaming row. It feels wrong and destabilizing. I can’t even defend myself if I am wrongly accused. I will do anything to keep things quiet and stable.
On an intellectual level, I understand that compromise is meant to be at the heart of relationships, that we are meant to come together as one in a way that accommodates our differences. On an emotional level, however, all I feel is how is this even possible?
I wish I could be the wife Tim wants me to be. The one who will agree to learn to tango on a whim or will say, let’s chuck it all in and go on a grown-up gap year. But my need for stability – to keep working, to keep my day-to-day the same – doesn’t allow for that kind of huge change. I don’t do spontaneity.
I worry I have done to him what I most fear someone might do to me. That I have subsumed him. Stopped him from being him. I feel sick at the thought of it. Have I unwittingly done this? Rationalizing it, I know I have encouraged him to follow his dreams. To find a way to visit Norway to see the aurora borealis. To photograph polar bears in Spitsbergen. To follow prides of lions in the Serengeti.
Perhaps I am the excuse he needs not to do such things. Perhaps telling himself that he cannot do these things because of me – even with firm evidence to the contrary – saves him from having to face up to his own shortcomings; by his own admission he lacks drive and ambition. I ask him to give me his perspective.
‘You haven’t subsumed me in any way,’ he says. ‘If anything you have sacrificed too much of yourself for me. If I bombard you with stuff to do – to see the Northern Lights, to visit Alaska, whatever – it’s because I’m desperate to share everything with you. To see you experience real enjoyment, to see you let yourself go and just live in the moment. With your guard down.’
The sentiment is lovely, but it is also quintessentially neurotypical. It is faulty thinking to believe that because he is interested in something, I will be too. This has been happening to me with neurotypicals since I was a small child. It began with food. Just try these fish fingers. You’ll like this cheese sandwich. Give this new brand of cereal a go – you’ll love it. As I grew older, it became: Come to this party, meet this new person, try this new job.
It takes a while to accommodate anything new into my life and it’s better if it slowly finds its way in. When something new happens, it knocks me off balance. It makes me question the other parts of my routine. A friend, Mark, once told me that many of his romantic relationships ended due to his non-attendance. I’m like this with too many things in my life.
Instead of looking outwards, or taking in the interests of others, I focus on my special interests. They can be subjects as diverse as the psychology behind school shootings, politics, a particular clothing brand, a movie or a book. I can become fascinated by an historical event, such as the hours after Kennedy’s assassination. I can find I suddenly need to learn everything there is to know about etiquette in the 1950s or a particular style of cooking.
For me, a special interest takes the form of needing to know everything possible on the subject. The world we live in is messy, complicated, loud, painful, and makes little sense. My special interests keep me safe. They stop my anxiety from spinning out of control. They ground me. I find facts about them in books, online or in other people’s heads. These facts are soothing and I layer one upon another until they have the effect of a balm.
If my interests were people-focused, they would be too painful to deal with. People are unpredictable. They say one thing and mean another. They tell you things you want to hear, rather than the truth. Autistic honesty has a purity. Ask us a question and we will tell you the truth. One hundred per cent. Undiluted by squeamishness. Unadulterated.
Of course, I have learned to lie socially. If someone asks what I think of her new haircut and it looks awful, I can say I like it. I can’t, however, resist the urge to add some truthful reflection, such as, ‘Have you thought about wearing it back off your forehead?’ or, ‘Maybe if you had the back cut a little shorter it would make you feel less conscious of it.’ I have to find a solution to a problem. If I’d just said, ‘Wow, it looks awesome,’ would she have felt better? Probably. But for how long? Surely people don’t believe the lies they are told all day.
I look for characters on TV and in movies who might be autistic. Not the typical, geeky males, but subtler female types. I think we all need to see ourselves represented. Many raise the character of Saga Norén (played by Sofia Helin) in the Swedish/Danish television drama The Bridge, but I don’t relate that much to her. I find her too dark. Where I do feel a synergy is with Elise Wassermann (Clémence Poésy) in the English/French version, The Tunnel. She is much more like me when I am not pretending.
However, the TV character I relate to most is Sloan Sabbith (Olivia Munn), in The Newsroom. I’m not sure she is written to be autistic, but she’s good at her job despite social skills that are wonky. She manages to have relationships of sorts, but they are tricky and dysfunctional. She’s absorbed by her subject – financial news – and, although I know literally nothing about this, I am very much reminded of myself when she talks about her specialist subject. She reels off facts about the debt ceiling in a way that seems more than professional. Instead, it seems like a passion. It reminds me of the way I talk about whatever is occupying my brain.
Most autistic women and girls – whether diagnosed or not – seem naturally and inherently to find a way to copy their neurotypical peers, be they girls in their class, colleagues or even characters in books or on screen. The Newsroom also provides me with a role model to copy – MacKenzie McHale, played by Emily Mortimer. She is pretty much perfect. She is passionate, but not obsessive. She is devoted to her work but has outside interests. She is not afraid to show her emotions. She makes mistakes and survives.
The sun goes behind a cloud and I ask Tim if he wants to go inside. We go into the kitchen and I suggest I make some chicken burgers. He sits at the table still doing the crossword while I line up the ingredients.
‘What about my autism do you find annoying?’ I ask.
‘Really? Again?’
‘I want to know. Give me anything.’
‘You know I hate doing this, but – oh, I don’t know – you wear the same clothes every day. Jeans and a grey T-shirt or jumper. You have no concept of dressing for anyone but yourself.’
I think about this. It’s true, but I am confused at the idea of dressing for someone else. It makes little sense to me. Clothes need to be comfortable and liveable with. I cannot stand anything patterned. Jack does a good line in very loud, hipster shirts, which I can barely stand to look at. The patterns make me feel vertiginous, as if I might faint. Generally most of my clothes are black, white, grey or dark blue. I endlessly buy very similar soft, grey sweaters.
I tend to shop only in one place at any given time because shopping is not an experience I enjoy. I buy good clothes, designed to last, and couldn’t contemplate facing a Saturday on
the high street. That people do it weekly, as if it were a hobby, is such an alien concept to me.
‘I’d like to see you in something different,’ he says.
I cannot understand why I would want to do this. This isn’t a feminist statement. I just don’t see how anything can come above comfort when it comes to choosing clothes. I avoid anything where I’d have to wear a posh frock; I find them too constricting. And I am hopeless at walking in heels. Even though I have a job which offers myriad opportunities to go to parties, openings, award nights and many other seemingly interesting events, I generally find myself turning them down or agreeing and then flaking at the last minute, in part because of the clothing issue.
I own two little black dresses, one for summer, one for winter. They both came from L.K.Bennett and I begrudged so much spending the money on them. How many lovely grey jumpers or pairs of pyjamas could I have bought with the money? Still, they were a practical purchase. They’ll last for years and won’t date and, because I so rarely go out, people will forget they’ve seen them before.
Should I try to dress more often to please Tim? Is it a romantic thing to do? If you asked him, he would probably say that I simply don’t have the romance gene, while he is biologically programmed to crave that kind of attention. Not the Hallmark hearts and flowers kind, but long, lingering glances and something indefinable that I’ll never quite manage to understand. A closeness perhaps or a passion, a feeling of oneness that seems alien to me.
Years of being with me have eroded this in him. His needs are consigned to a locked folder on his desktop in which he never looks. My lack of response was the death knell for anything more romantic. For that I feel guilty. I simply don’t know how to respond to the kind of sweet nothings other women seem to crave. I panic that I’m meant to say something back and that I’ll flunk it.
I sometimes see him looking at me when we’re in the office together. He’ll turn from his bank of Mac screens and stare at me and sigh while I am typing on my laptop. I don’t understand what the look means but even after all this time it sometimes scares me slightly.