Although I was completely unaware of what was about to happen in my life, with hindsight, there were a few clues. And some people have since commented that they weren’t completely surprised by the outcome.
Looking back, there were occasional messages and odd comments made, I assumed, in jest. I largely ignored these, assuming crossed wires or fanciful imaginings. Panic attacks. Stress. That is all. I get so many messages telling me that eating more vegetables or taking some magic supplement or giving up gluten or wine or whatever would solve all my problems that I tend to smile and say thank you and leave it at that.
There was also some stuff on the internet. A video of a kid in a shopping centre. It’s supposed to show something. I don’t understand it. I just assume it’s a bit rubbish. Then a quiz. Just for a lark. Internet quizzes are notoriously daft. I think one once told me I should be a goat farmer in Borneo. I score several times in the mid-40s out of 50 on this internet quiz. Ha ha I say. Internet quizzes. I return to my dreams of goat farming.
However, within three days of leaving home to spend the summer living in a tent and playing orchestral music things start to go wrong. Badly wrong. Extreme “panic attacks” as I’m still calling them. Running away to hide in a shed as the result of one small thing upsetting me. Nights silently crying in my tent, unable to think, speak, or even put my torch on. The feeling of sickness and exhaustion that engulfs me half way through every rehearsal. My inability to focus, to play properly, to cope with any more than just sitting there. My reactions to apparently ordinary things is often so extreme that I completely lose control of myself. This leaves me drained, exhausted, and somewhat embarrassed.
I know I have mental health issues. I’ve had them for decades. I also know that eating in the big room with lots of noise and people is unbearable for me. So the people make an accommodation for me and let me eat outside. I don’t like having to be different, but maybe it’ll sort things out. I am sitting with someone who asks me what my diagnosis is. I tell her – bipolar disorder. She asks me whether I have ever considered…
Of course I haven’t, not seriously. Why would I? I smile and say “maybe”. Then I chat to someone else during a tea break. We sit side by side. She describes so much of her life that makes so much sense to me. She seems to understand what I say in a way that most people don’t. When the words run out we simply stop talking and drink tea. It is easy and feels unpressured. We don’t look at each other once throughout the conversation. That feels right. More relaxing, less exposed. I know something about this person. I start to think.
When I return home there is a book waiting for me, sent by a friend who has been following my trials and tribulations on Facebook. She says “I think you should read this.” Since it would be terribly bad form not to read such a gift, I start to turn the pages. And the pennies start to drop. Slowly at first. There are similarities. Yes. But me? Really? No! Well, maybe. But this is how my life is. This is just normal life, surely? It’s certainly normal life for me.
I buy another book. A book with lists of “traits”. The slot machine in my head hits the jackpot and the steady drip of metaphorically dropping pennies becomes a deafening cascade of metal discs. This, improbable as it at first seemed, appears to be the case. I do the Internet quiz again, several times, taking it more seriously this time. My most oft-repeated score is 47.
My husband and I start to make notes. To compile data. I dredge up memories from childhood. Of bad behaviour. Of the junior school headmaster who questioned me about home life as he thought I was being abused – he sensed something wasn’t right, but didn’t know what. Of being bullied from reception to sixth form. Of hours on the swing. Of fear of the telephone. Of biting my nails until they bled. Of sitting alone in my bedroom most of the holidays. Of crying at playtimes.
And through my early adulthood. Of abandoning trolleys in supermarkets. Of exhaustion so severe that I would collapse or be sick. Of crippling depression and suicide attempts. Of my inability to sustain employment or be financially independent. Of my notorious inability to cook a simple meal or remember to eat. Of waking up most mornings for the last quarter of a century thinking “How long can I keep going with this life that has no place for me and that I find so difficult?” Of cutting labels out of my clothes, being unable to wear bras or tight waistbands. Of lying in bed shaking after social events. Of deadlines missed. Of the hours of planning needed to get out of the house. Of jiggling my legs and playing with my hair and chewing up pens and rocking gently backwards and forwards on the sofa. And so on and so on and so on. Pages and pages and pages of it.
I make a double appointment with my GP. We take the notes. The pennies start to drop in her head too. She remembers an incident where the local swimming pool called the surgery when I was detained there, apparently violent and extremely distressed. Meltdown. Too much noise. Too many people. Somebody kicked me. Invaded my space. I couldn’t cope. I gave up swimming.
My GP writes the referral. I go to a rehearsal that night and then away for the weekend without it really sinking in. But knowing that my GP believes me. Relief. A sudden feeling that all that had gone wrong in my life all these years was Not My Fault. A communication issue. Different perception of the world – over and under active sensory systems. Not just fussy. Not naughty. Not lazy at all – in fact, quite the reverse. My life, which I had long viewed as a string of failures, I now see as remarkably successful, given what I was dealing with. I achieved so much while masking a condition that made life so difficult.
Alongside the relief, I feel a sense of sadness that this was not spotted earlier. That I have lost my youth to illness and difficulty. That I am deeply in debt, have received almost no support, and have spent my life being told that I am so intelligent I’ll be able to cope and that I should work harder, smarter, manage my time better, just get my act together. Impaired executive function makes these things very difficult, especially when I’m already working at my limit to cope with the sensory overload and the complexities of interacting with other human beings. Time agnosia means that I’m actually an expert in time management, but still struggle with deadlines. I thought it was like this for everybody, but that they somehow had access to energy I didn’t and they were tougher than me.
I start the wait for the formal diagnostic procedure which I know might take months, and continue to gather evidence, while trying to cope with my fears of the diagnostic process. However, it is so obvious what has been going on all these years that I absolutely believe it. I speak to my mother and learn about my early life. I was a 4-year old who sat on my own and obsessively drew circles all day and couldn’t be persuaded to write. The teacher said she’d never encountered a child like me, but in the early 1970s nobody knew what to do about me – other than removing the paper to stop the circles. My only memory of that time was crying every playtime as I was mercilessly bullied and the playground was painfully noisy.
I start to adapt my life, and things get easier. I realise how looking at people’s eyes saps my energy. I can do it, but there is a cost. I consciously start to spend more time alone. My next pair of glasses will be tinted despite the fact that I can’t really afford them because it will help the confusion and nausea I get in bright conditions. These adaptions also come with a sadness that I know I will have to exclude myself from many social situations if I am to stay well. I will have to change my life for ever if I am not to pay a heavy price. If I plan to go to a dinner or social event I must leave two blank days in my diary for recovery. And the chances are I will end up feeling sick and in meltdown too.
But I also discover behaviours long hidden that feel beautiful and soothing and joyful to me. And I allow myself to explore what my body naturally needs to do to be comfortable and happy, even if it is counter to what I have learnt about societal expectations over the last 4 decades. The word “stimming” is brand new to me, but it turns out I’ve been doing it much more than I thought throughout my life. Now I discover how I can dissipate some of the immense stress I feel by flapping my hands and sitting on my feet and simply not forcing myself to stay still. My whole system breathes a huge sigh of relief.
The whole process of discovery and realisation took about six weeks. Six weeks of public meltdowns, many tears, massive amounts of learning and reading and researching, acute anxiety, way too much wine, almost no sleep, difficulties eating, and hours and hours of discussion with my husband and one or two others. The culmination is the biggest thing that has happened to me in my life. Ever. No question. The thing that will eventually enable me to be more myself than I have ever been, happier than I have ever been, despite the inevitable challenges that interacting with the world will continue to present.
A few days after the visit to the GP, unable to wait, as I had hoped, for the formal diagnosis, I type the words that finally make sense of my life, that feel like coming home to where I should be. It feels very strange, almost unnerving, but it also feels right. Very very right. To finally realise and admit what should have been obvious all along, but which nobody saw until this year.
I am autistic.