I can’t go on like this. I am burnt-out and exhausted. This, I have read, is common in autistic people, particularly those who have struggled for years to ‘pass’. It is called the cost of passing. It is essentially exhaustion brought on by the extra strain of pretending to be something one is not. Tony Attwood summed it up well for me. He told me: ‘People with Asperger’s or autism expend a huge amount of mental energy each day coping with socializing, anxiety, change, sensory sensitivity, daily living skills and so on. So they’re actually expending more mental energy. Think of it as an energy bank account. They are withdrawing so much energy throughout the day just by surviving. It is why children at school, for example, have almost no mental energy left for the actual lesson – because they’re coping with the sensory, the anxiety, the social.’ ... For Tony Attwood, late diagnosis for girls and women usually means a greater number of issues later in life. He told me: ‘The trouble is that girls are good at camouflaging it. We often don’t pick them up until they’re in their teens or older. ‘Those diagnosed late or in adulthood have worse outcomes. They didn’t get support and understanding at a formative time in their lives. What concerns me is that they created a scaffolding to survive, but that it may not have been the best approach and that sometimes that scaffolding has led to all sorts of issues and concerns, such as depression, low self-esteem, and not having an anchor in society. ‘I ask, When would you have liked to have known? and they say as early as possible. I thought I was stupid, mad, bad. I wouldn’t have been depressed. I wouldn’t have escaped into imagination. I would have handled things differently. I could have explained myself. People would have understood me. I could have been protected. And, after the euphoria of diagnosis and an explanation, there is the wish that it could have happened earlier. Then there is the fact that the scaffolding has been taken away. What do I put in its place? There’s almost a grieving for the lost person.’ -- Laura James, "Odd Girl Out: An Autistic Woman in a Neurotypical World"
While I am only autistic by training — both my parents had Aspergers — I profoundly understand the long term cost of passing, understand the issues and concerns caused by inadequate support during formative times which created flawed scaffolding and restrictive, crippling armour.
I never, ever trusted that I fit easily into any group. I knew that I had to work, and work hard, to be compelling and of value, but that even then, I was going to be the freak, the weirdo, the odd-ball, the goat. I was routinely reminded what a shit I was, embarrassing to my mother and basically worthless because I didn’t make her feel proud, happy or serviced.
In my mind is a massive, lifetime archive of the times I screwed up, the times I felt stupid and ashamed. This inventory started as lessons, things to avoid in the future, but over time it turned into a vat of shames, triggers to make me turn away from events that have touched me before, coding me into avoidance.
Avoidance, of course, is what I learned growing up. My only agency was to be sly, and manipulative, working from the shadows to create whatever change was possible. As a guerrilla fighter I stayed out of the spotlight, staying wacky, frayed at the edges, never assuming that I could participate in normative ways, always the clown with wit rather than the star living in the assumption of desire & adoration.
It was my training, my family shaping that lead me to this, but it was also my awareness of my queerness. My trans was out as early as the therapist I was sent to in eighth grade, the minister I reached out to when I was 15. The lessons I got from them were simple: stay in. Keep it hidden, pass as whatever the hell you could pass as, no matter what the price of denial and losing the power of my formative years cost. Adultified early? Absolutely, which lost me the exploration of my own fluid possibilities, hardening me in a way that was out of any natural shape.
You can’t explain yourself when you don’t have words, which is why I have spent a lifetime searching down useful phrases, but when people are so stuck in themselves, all the words make no difference. I knew that my words were only useful to me, not useful in a world where the audience only cared about their own needs.
I understood the lifetime price of this Morey Amsterdam joke the first time I saw it in the 1960s.
All those decades, all that loss, all that twisting into shapes not natural to me, all that brain coding which scarcity imprints.
And now, somehow, I feel the need to transcend that past. And I have not been able to find any support structure which can understand, empathize, comfort and coach me in moving beyond the costs of a lifetime, the costs written on me because The Body Keeps The Score.
“I’m glad you are not one of my salespeople,” the slick Marketing VP told me, “because I can’t figure out what motivates you. All your ports are filtered, so there is no way to push the desire buttons in your unconscious.” Overthinkers who underachieve, yes. The price of passing. So much mental energy for defence that there is none to achieve flight.
My anchor is internal. It had to be. I played a lot on my own. That’s powerful, but it is also limiting and lonely.
I had a dream the other night where I was with a huge group of family members in a tourist house in London. I wanted to change, but I found there was not only no room and no time, but other people were picking out what I should wear. I knew their choices would make me look clowny, but I tried, though I was upset. Janet from The Good Place appeared, though she was more like her improv trained portrayer, the brilliant D’arcy Carden, and she said I should do what I like. She helped me make selections of what worked for me, holding off the family by telling them that they had to let me make my own choices, that they had to listen to me. I felt strong, seen, supported, so I started to riff, even wandering through the store performing, gathering an appreciative audience. At the end, my sister in law still had to explain to me her point of view, what was really important, but I just smiled because I knew Janet had my back.
I woke up and cried.
Could I ever have been protected and safe, away from the enormous, draining, lifetime cost of adaptive behaviour?
Doesn’t really matter now, anyway, does it?