Autistic Spectrum Disorder
Updated: Mar 22
19th March 2022
During the afternoon down time on a luxury fitness retreat in October 2021, I faced a familiar dilemma. Do I join the growing gang of people, perched on each other’s sun loungers as they comfortably chat about the morning's exercise sessions, comparing aches and pains? Or do I stroll casually past, Kindle in hand, to set up camp on a distant seat in my guise as a happy and confident solo person, who is not bothered about joining the chattering group?
I choose an awkward middle ground. Close enough to hear the conversation, but not close enough to be able to engage. As I watch more people arrive, I am conscious that my distance makes me appear aloof but hopeful that it comes across as a casual confidence.
This was the holiday that the possibility that I might be autistic first crossed my mind. I was 42, and an old hand at managing my persona within the group dynamics of many similar retreats. I was also successful in my career, ran a large team in a prestigious media agency, and was held in high regard as someone who could be relied on to present in high stakes meetings with a personable gravitas. My reputation was established as a calm and dependable leader, as someone who inspired confidence amongst colleagues and clients alike.
Yet I was also someone for whom every single meal on that holiday elicited a familiar panic. I dreaded seeing who I was sitting next to for fear that it was not a person who could carry the conversation. I dreaded the rising anxiety as I racked my brain for common ground and conversation topics. I dreaded the inevitable moment at every meal when I would look around me and see that every other person around the table, even the people I had identified as shy or introverted, were engaged or included in the conversation around them. And I was not. And despite my professional successes, somehow could not.
This was not a new experience for me. Many retreats over the years all led to a similar outcome. What was new however, was that I started surveying the scene around me and actually asking myself: why? Why was this so damn hard?
I also started saying out loud, when the opportunity arose in conversation, that I found the group situation difficult, trying to gauge if this was everyone’s experience. I started to recognise that every conversation that I initiated took a tiny leap, an almost imperceptible decision to switch on, to ask questions, to deliberately be engaging and engaged.
I’d spent a lifetime labelling myself as an introvert, but suddenly that label didn't quite fit. During the exercise classes we were encouraged to whoop and cheer in support, and I had no reticence in being the biggest cheerleader there was. Yet on the mountain hikes, while the rest of the group split off into comfortable twos and threes, I inevitably ended up walking alone.
I would survey the rest of the group, trying to reconcile the growing disparity between my professional presence and my private awkwardness and wonder why I couldn’t transfer my finely honed social skills to this situation.
I knew that the holiday would culminate with a party and awards. And I knew from my previous visit that, without the social lubricant of alcohol, I would find it excruciating. Upstairs in my room I looked up flights, pondering whether to leave early and miss the party. I decided to stay. It went exactly as I’d feared and, just like every evening that had preceded it that week, I slipped away early and quietly, unable to integrate into a group experience that I so desperately wanted to be part of.
So, the seed was planted on that holiday. The word autism crossed my mind. It didn’t make it as far as Google at that point. But it loitered quietly in the background.
Over the next few months, I started to flounder in my relationship. My relationship of 7 years was, by all accounts, a good one. It was supportive, caring, respectful, fun and affectionate. We shared values, holidays and the same tastes in trashy TV. But I was struggling.
Despite us living apart, I was desperate for time alone. The weekends were always spent together and, given the living separately arrangement was very much driven by me, I felt I couldn’t ask for the additional time I needed. Pushing through the bubbling up desperation for time alone, for reasons that I could not articulate without appearing selfish, or uncaring, I ploughed on. I would often flare up in overloaded frustration. I would suddenly find the noise of the TV unbearable and disappear for baths or walks. I would tell my partner to kick back and enjoy her TV shows in the lounge while I pretended to nap, but in reality just lay on the bed on my phone.
At one point, following a negotiation over how many days I could have on my own around Christmas, and having lost the plot a little bit when L suggested an overnight trip away between Christmas and New Year (a trip that would have taken away one of my precious scheduled days) I said out loud for the first time “sometimes I wonder if I might be autistic”. We’re all a little bit autistic was L’s reply. So I parked it. I had a sneaking suspicion that I was not neurotypical, but it was accompanied by the sense that I was not ‘bad’ enough.
Fast forward to January and I ended the relationship. There were reasons beyond my insatiable need for time alone. For the most part they were reasons that somebody with a more sizeable bank of emotional energy might at least have had one shot at working through, given the length and the strength of the relationship that had preceded it. But I did not have those resources. I still do not have those resources. And whilst there was inevitable sadness, my overwhelming feeling was, guiltily, relief. I was tired. I was drained. I needed some respite from what felt like an extraordinary effort to simply live my apparently successful life.
The draining feeling had been escalating for a year or more. Whilst remote working had given me more time alone, it had also removed any opportunity for borrowing other people’s energy (another clue for me, that 'introvert' didn't quite fit with my understanding of myself). Endless video calls added an extra layer of needing to be constantly and visibly ‘on’. My work alter ego, carefully and successfully crafted over the years, had to adjust while I navigated maintaining direction, assurance, authority and leadership. Which I did. And did well. But between the meetings and the calls, I was taking myself to bed at a frequency which, frankly, should have got me sacked.
Somehow, miraculously, I continued to perform at my job at a level that was perceived to be acceptable, exceptional even. I focused on channelling my available energies to deliver my best front to the senior people it mattered most to impress, meanwhile fighting constant guilt that I was letting down my wider team by having little left to offer them. I felt like a fraud. A lazy fraud, fooling people into thinking I was doing a great job, when in reality I was lying in bed throughout the day, drained, setting alarms to go off 5 minutes before the next meeting and performance. On the nightly calls to my partner, I pretended I had been working hard all day.
At the beginning of February, following a recommendation from a friend, I went to see a therapist. I’d had a lifetime of unresolved and largely secret mental health issues from 16 onwards. Depression, anxiety, self harm, breakdowns, disordered eating, so many medications, suspected OCD. 3 years earlier, I’d quit my job of 15 years on a whim as I tried (and failed) to find relief following what I’d labelled a stress induced breakdown. I’d dropped out of university many years before when it all got too much to cope with. Yet in all that time, I had never pursued any talking therapies. My only medical interventions had been endless and hopeless trips to various GPs plus one referral to a psychiatrist at university, where the only solution on offer was more drugs. And the bizarre suggestion that perhaps I wanted to be a man. I figured it was time to try and sort this shitstorm of a brain out. I needed help.
I arrived at the therapist’s office and cried for 90 minutes. I had so much ground to cover, I didn’t know where to start. The recent end of my relationship. The grief at the loss of a best friend 7 years prior. The shadow of being the little sister of a sibling whose needs during my teens were so great, that mine had never felt bad enough in comparison. My consequent, deep sense of never wanting to be an additional burden. I finally had an outlet, and suddenly had so, so much to say.
It was at the third session with the therapist that the penny started to drop a little further. Saying out loud for the first time some of my experiences and coping mechanisms, was accompanied by an inner whisper that said 'this sounds a bit like autism'. At the end of the session, the therapist asked me if I'd ever considered that my experiences with what I'd attributed to OCD were perhaps symptomatic of some other underlying cause. No, I said. And then I left the room. And two minutes later, I hit Google.
My first search was 'autism and OCD'. I quickly learned that the two experiences often co-exist. It wasn't long before I stumbled across the idea of autistic burnout - a concept that resonated hard with my experiences of quitting my job and university where I had, as I’d described at the time, simply ceased to function. It also resonated at a less dramatic level - the constant awareness of draining away and trying to carve out any opportunity to recharge before I hit crisis point again.
I dug deeper. I learned about camouflaging and masking. I knew that I operated with an alter ego in work, and had tried to adopt a fake it 'til you make it approach in many areas of my life. I knew that I leaned heavily on alcohol in order to enjoy social situations and facilitate connections with people. I learned that some women are so adept at camouflaging and adapting that they don’t even know they are doing it, and how it still takes an inevitable toll given the mental energy required to maintain.
I read about how change is especially challenging for autistic people, and thought of the self coaching techniques that I knew to deploy during periods of change, having learnt about the change cycle on a leadership course.
I thought back on periods of struggling with uncertainty, another common experience I unearthed. I remembered how the 4 week wait I had endured waiting to hear back on my offer on a flat, had consumed me so disproportionately to the actual non urgent situation I was in, that I couldn’t focus on anything else at all. Any hope of self care, function and rational thinking went out of the window. I drank secretly and heavily every night for a month, trying to curb the escalating anxiety, whilst writing furious emails in my head to the vendor about how he needed to know that the selfishness of his indecision had the capacity to ruin people’s lives. I remembered the first 6 months in my new flat, refreshing my knowledge of the change cycle, trying to determine where I was on it, and when I would feel ok again in my objectively beautiful but unfamiliar new home.
I thought, with shame, about the fortnight prior to my best friend’s death from cancer, where the all consuming uncertainty about when exactly she was going to die, impacted me almost as much as her actual death. I thought about all the macabre online searches I had done about the process and timeline of dying to try and find an answer.
I listened to podcasts, watched videos and read anything I could find about women receiving an autism diagnosis later in life. I found so many similar stories of years of poor mental health and frustrating visits to GP surgeries. I discovered that the way it presents in people varies enormously, and that people with high emotional and intellectual intelligence can adapt so completely, that their autism is undetectable to friends, partners, family and themselves, often finally reaching a realisation following a burnout. I learnt that my own previous knowledge of autism was based entirely around the narrative of those who had not learnt adaptations and there was, in fact, a whole world of invisible and highly adapted people out there, experiencing the same struggles that I was. Am.
Inevitably I looked back on my childhood to seek out clues to support my growing suspicions. I was a bookish and eager to please child, in an academic but at times loud and angry family, where it was often a struggle to be heard. I was obsessed with ballet books, horses and the movie Annie, a film that I watched back to back, over and over again. I had friends, usually one best friend at a time, a friendship that would fizzle out when they became friends with a wider group that I somehow never became part of - a pattern that replicated itself many times over the years.
The shared experience of struggling to start and maintain friendships, despite a strong desire for connections, hit home hard. With the exception of one enduring and important friendship that started at 16, which went on to unlock the two other important friendships in my life (including the now gone friend), I have not maintained or made a single other significant friendship from school, or life or work. A few peripheral and social friendships have existed and exist, ones in which I loiter on the fringes of a tighter group, embarrassed at my desperate desire to be a closer part of it.
But I did harbour a childhood secret, that maybe would have offered an early clue had anyone known about it. I was a secret counter. Specifically, and oddly, a counter of syllables. From around the age of 8 or 9, I counted and counted. I counted the syllables to the theme tunes of my favourite TV shows. I counted the syllables to conversations that I heard. I counted the syllables to passages in books that I read. I learned to listen out for phrases that I thought might be 10 syllables long, and would be delighted if I counted and I was right. I liked when a count was a multiple of 5 so it would finish on my thumb in my invisible and constant finger counting. I learnt which finger to start the count from for songs that wouldn’t have otherwise finished on my thumb because they weren’t already a multiple of 5.
Counting syllables became such an integral part of my life that it followed me through my teenage years and into adulthood. It morphed in my twenties from some kind of weird and pointless hobby, into an OCD trait that I would default to in an attempt to quiet down my increasingly frightening intrusive thoughts. I still hear phrases and count them occasionally - though somewhere along the line my favourite syllable pattern shifted from 10 to 8 (I say somewhere along the line as if I have no idea when it changed. I know exactly when it changed. In a flat in south London in my twenties I started using the corners of the TV to invisibly count, and its 4 cornered shape quickly opened the door to a new favourite number).
So what now? Now I am seeking a formal diagnosis. The process is made easier by the fact I have the means to pay for it. The NHS adult autism waiting list is 4 years long, and I suspect that I would struggle to convince a GP to offer a seemingly functional adult a referral to an already over stretched service. I do have a GP referral, that I hang on to as some kind of validation, though it was procured because I said I would be going private. Only to then discover that my insurance does not in fact cover ASD assessment.
What is not easier however is the current all consuming uncertainty over the diagnosis. I’m back in a dark place where all my energies are focused on not knowing. My focus is limited, my brain is foggy, I have no respite from the endless questioning, doubts and thought loops in my head. I am trying to reframe every single part of my life. And I am struggling. I really need some time off work before I crumble completely, but seeking time off to cope with the impending autistic burnout caused by the uncertainty of an unconfirmed autism diagnosis is not a conversation I think anyone knows how to have.
I have found a consultant, but there is still a wait until the initial appointment and then again until the formal assessment. She deals only with adults, and predominantly with women. Her website is filled with testimonials from female doctors, teachers and engineers in their 40s praising her process and understanding, and the relief a diagnosis has brought them.
While I wait I swing wildly between total certainty and complete self doubt. Maybe I’m delusional and rewriting the narrative to fit some diagnostic criteria that I’ve read about. Maybe I’m just averagely shit at coping even though I have all the privileges and advantages that anyone could hope for. Maybe everyone else manages to just quietly muddle through without the need to declare themselves as different somehow. I am trying to brace myself for the fact that I might not have ASD after all, despite what the many online tests say. And that bit, I haven’t figured out just yet.