As those who have read my previous post know, I have recently been diagnosed with autism and inattentive-type ADHD. Most of the people who saw my announcement on social media and read my post were kind and supportive. I am really grateful to you all. But there were one or two people who didn't seem to understand what this diagnosis means for me.
Receiving a diagnosis of autism is not like receiving a diagnosis of, say, cancer. Autism isn't an illness. It's not something that people acquire or develop in later life. I was as autistic at three as I am at sixty-three. All the diagnosis has done is belatedly recognise a disability I have had for all of my life.
Nor is autism something that people can overcome with medical treatment or therapy. I will be autistic for all of what remains of my life. There is no cure. Counselling might help me work out what I can and can't do, and indeed I have been advised to seek counselling. But it won't make me any less autistic.
Autism is not a lifestyle choice. I did not obtain a diagnosis because it was "fashionable", or to justify an unconventional lifestyle. I was not looking for sympathy or excuses for my persistent social and emotional difficulties. And I was not trying to avoid taking responsibility for my behaviour. Far from it.
I wanted to find out why, despite the considerable time, effort and money I have spent trying to learn how to "behave better", I still upset people without meaning to and act in ways that others consider weird. Why I still find social engagements exhausting and draining. Why I still melt down when things get too much for me. The event that sparked my decision to ask for a diagnosis was a hugely embarrassing meltdown in a doctor's surgery.
Now, as I come to terms with the knowledge that my social functioning and emotional management are permanently impaired, I find myself wondering why I spent so many, many years trying to fix something that was never fixable. I suppose I hoped that somehow, someday, I would get better. Now that hope is gone, and in its place must come acceptance, not only on my part, but on the part of all who know me. My "difficulties" are part of me. They are, we might say, who I am.
As a child, and even as an adult, my problems with social interaction and emotional management were dismissed as "bad behaviour" that I could correct through my own efforts. As one of my managers at SBC Warburg said, "Frances needs to work on her social skills".
To motivate me to improve my behaviour, I was provided with a judicial mix of sticks and carrots. Did this work? Well, sort of. I copied the behaviour of others, mostly successfully, and eventually learned how to conform to social expectations. But oh my goodness people's behaviour was confusing. It appeared to be a mixture of double standards, unspoken expectations and value judgements, none of which I understood.
Initially, I modelled my behaviour on how older people treated me. But this turned out not to be a good strategy. Repeating to others things my mother had said resulted in punishment rather than approbation. And at the age of about 9, patting one of my school teachers on the head because I was pleased with something she had said did not go down well. From this I learned that the way my parents and teachers treated me was not necessarily a good model for how I should treat others. I found this confusing.
Since modelling my behaviour on that of older people didn't work, I decided instead to copy the behaviour of children that older people regarded as "good". As long as I could remember what they did (or didn't) do that older people received approvingly, and replicate it appropriately, I could avoid the sticks and I might even qualify for a carrot. But this is harder than it sounds. It meant accurately observing other children's behaviour and recalling it at the right time. I didn't always know what the "right time" was, so now and then I replicated supposedly "good" behaviour at the wrong time and ended up in trouble again. And "good" children aren't always well-behaved (this is one of the weird double standards that I have never understood). So I was sometimes punished for bad behaviour when I had copied what I thought was good behaviour. I found all of this very confusing.
Some aspects of my behaviour proved resistant to change. Despite being repeatedly told I must learn to control my temper, I remained prone to meltdowns. Working in groups was difficult and stressful, and I had a distressing tendency to say or do things that upset or annoyed people. And I didn't socialise much with other students, preferring to pursue my own interests independently. Because of this, I rarely received the promised carrots: on the only occasion that I ever came close to receiving a medal for Good Conduct at my secondary school, some girls in my class took it upon themselves to complain to the Head about my behaviour. My form teacher tore them off a strip in front of the class, but I still lost the medal.
As an adult, I sought help. I spent eight years in individual and group therapy to try to understand why I struggle with relationships and learn how to manage them better. The therapeutic model was Transactional Analysis, which is rather a good model for someone who doesn't naturally understand how people interact. "What do you say after you say hello?" asked Eric Berne, the founder of Transactional Analysis. This is a question that I had often asked myself. I genuinely didn't know.
I found Berne's extensive documentation of "pastimes" and "games" that people play enormously helpful. Many of the pastimes seemed silly to me - I'd much rather talk about something interesting - but if that's what I had to do, then I would learn to do it. And learning how to avoid getting into nasty games* turned out to be essential for my survival in the workplace.
One of the members of my therapy group took issue with the way in which I approached meeting new people. "I don't get you," she said. "You don't do what I expect." Puzzled, I asked her what she expected. "I would expect you to find out about people. You know, by questioning them." It had never occurred to me to do this. In fact I find being questioned by a stranger unpleasantly intrusive, so if I had thought about it at all, I would have assumed that others dislike it too. But apparently this was wrong. So I decided I could learn to do this "social questioning". I watched what she and others did and copied them.
Now, I've learned how to ask people where they are from and what kind of journey they have had. I've learned to listen attentively while they talk enthusiastically about their children, their pets and their holiday plans. I can even talk about the weather, if I really must. I've also learned how to make eye contact, since it seems to be expected. In a social gathering, I can engage most people in conversation - what is known as "working the room". And I can honestly say I usually enjoy it. But I still find entering existing conversations hard, and I still at times find myself isolated. And it's exhausting. Last week, I attended social gatherings on two days running. The next day I was so tired I spent much of the day asleep.
But I wonder whether I should have responded to my therapy group member differently. I didn't do what she expected, but equally, she didn't do what I expect. My idea of getting to know someone is not to question them, but to have a conversation about something interesting. The challenge is to find something that both of us are interested in. I'm afraid that doesn't generally mean their children or their holiday plans, though I might enjoy talking about their pets, as long as they are happy for me to talk about animals (which have long been one of my absorbing interests). But I have a range of other fascinating topics we could talk about...
She expected me to adapt my behaviour to meet her expectations. And because I have been criticised all my life for my social behaviour, I assumed that this was reasonable, and tried my best to do so. But is it reasonable, really? Why should I adapt my behaviour to her expectations, while she makes no attempt at all to adapt hers to mine? Perhaps it's not me who has the problem, but those who are unable (or unwilling) to understand that the way I interact with the world is different from theirs.
In my individual therapy sessions, we discussed what I called my "mask" - the fake "self" that I had created in years of trying to conform to social expectations. I saw my real self as having a seriously disfigured personality, and I believed - with, to be fair, some justification - that if I allowed people to see my real self, they would reject me. So I hid her away behind a mask of social conformity.
I dared not let the mask slip, but it became more and more difficult to maintain it. By the time I was in my mid-30s, the mask was fractured and my real self was showing, to the detriment of both my home life and my employment - which rather reinforced my view of her as disfigured and destructive. And I was exhausted and burnt out.
My therapist tried to help me to come out from behind the mask. But I now know that what he really helped me do was build a better mask. Looking back, it seems odd that my therapist apparently never suspected I might be autistic, even though many, many autistic women create masks like mine. Perhaps my original mask was better than I thought.
But no mask is perfect. Good though my therapy-built mask is, it slips now and then. And it is terribly costly to maintain. I am so tired...
Maybe, eventually, I will come out from behind the mask I have so carefully constructed. But I'm not ready yet. So when you meet me socially, I will be the person you've always known me to be. But if you really want to understand me, then remember that what you see is not what I am. I've given you a glimpse in this and my previous piece of what is behind the mask.
And if I disappear, and don't answer your calls or your emails, it's not because I don't want to know you, it is because I've taken off the mask for a while. I will be back.
Related reading:
The Ones Who Walk Away From Omelas - Ursula Le Guin
The Ones Who Stay In Omelas - Coppola Comment
* In Transactional Analysis, "games" are almost universally negative, many are hurtful, and some are deadly.
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