Very Late Diagnoses concurrent with the pandemic

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In January, while recovering from Covid, I received another diagnosis.

The symptoms first appeared during childhood. It's just that no one recognised them. There isn't the medical equivalent of a quick lateral flow test for the condition either. It requires expert assessment to combine behavioural puzzles – using pieces that appear to come from separate jigsaws – to create an unexpectedly new picture.

This explains why I wasn't diagnosed with a life-long developmental disability until the age of 60. Embarrassingly, a former BBC science correspondent missed her own breaking news.

I am autistic.

Not surprisingly, it is a lot to process. It means, in commonly used language, I am "on the spectrum". Or neurodiverse. A "different" thinker.

I am that woman with no volume control who probably interrupted your conversation because a thought exploded from her head and immediately out of her mouth. The woman who is so brutally honest you might recall her as rude. The one who got overly excited about space stamps or wildflowers and kept going on about women's hidden histories, Wally Funk and the Mercury 13. The one who wouldn't shut up or let it lie.

One doctor said I was the oldest diagnosis he'd ever come across. But while many adults report feeling empowered by a late autism diagnosis, I am not one of them. At least not yet. My initial response was a mixture of shock and shame.
I felt broken.

Since the diagnosis I've been slowly reframing six decades of relationships, actions and behaviour through this new and alternative lens. In the same way a prism disperses light into a rainbow, my understanding of how and why I behave the way I do is expanding. It is both revelational and unnerving.

As a science journalist, naturally I've done my research and I've found out I'm far from alone.

Most of my time outdoors is spent wearing sunglasses as my eyes are sensitive to bright light. Then there's my intense dislike of certain textures and sounds. I once refused to go to school because pupils ate too loudly and, for a long period of time when young, would only eat tomato soup and chocolate pudding. In my 20s, I left my first-ever Japanese meal extremely hungry because I had gagged at the sight of sashimi.

I am also not entirely comfortable if anyone gets too physically close or "invades my body space". This discomfort is disguised by offering a handshake or a smile during an introduction rather than the awful increasing social tendency to hug or kiss. But I can be caught off guard. Once, when a French scientist loomed towards my cheek for a continental greeting, I panicked and told him rather forcefully: "Back off."

Then there are my colour quirks. Don't ask why, but I can't eat orange and yellow foods together. Ordering an English breakfast means ensuring that beans and egg are not served on the same plate or using, as comic character Alan Partridge once demonstrated, a sausage breakwater. No wonder I was labelled the family crank.

But we all have quirks, right?

In fact, apart from almost offending a scientist, who accepted my hasty explanation of "I'm British" for not welcoming three – yes an agonising three – cheek kisses, none of these quirks have interfered with a reasonably successful career involving communication despite a communication disability.

This is because I am social and chatty, present podcasts and can give public talks. Unlike many autistic people, I also have no problems making eye contact.

Behind the scenes, however, is where the pain and difficulties of having autism reveals itself. I have difficulty feigning interest in a topic I don't care about and am terrible at small talk, often an important part of getting to know people. This has sometimes caused isolation and feelings of intense loneliness and rejection.

Before most events or broadcasts I suffer nervous stomach cramps, experience panic attacks or – in worst scenarios – mini-meltdowns that few, other than my husband, witness.

As someone who makes multiple lists daily, I'm also permanently worried things won't go as planned. I over-prepare and get stressed trying to recall the entire contents of a book I've read for a three-minute interview.

Afterwards, when the relief of performing has worn off, I tend to withdraw at the earliest opportunity to decompress and lie down. A lot of social interaction leaves me physically exhausted. That loud, talkative woman has retreated to welcome solitude.

But this, apparently, is what many women with autism often do. We "mask" or fake it. Hiding discomfort under a veneer of geniality and learned social behaviour.

Then along came coronavirus…

I began producing a new weekly radio documentary for BBC World Service with the network's OS (Outside Source) team. As everyone struggled to make sense of a frightening new reality, it brought people together from across the globe to share deeply meaningful conversations.

Not surprisingly, many of those conversations were raw and emotional. The work meant listening to them repeatedly for editing. In the early hours of the morning I'd replay them in my head on a permanent loop: the hospital doctor in India who couldn't save his father from Covid. The loneliness shared by those isolated in the Canadian prairies or Australian outback. The unbearable sadness and grief of those whose loved ones died alone.

I had insomnia for almost a year. Most days I would work in tears listening to the riveting, poignant, yet often unbearable humanity.

The pandemic, as for many, caused hairline cracks within my psyche to deepen. These cracks widened into chasms of heightened and uncontrollable sensitivities and emotions. Some days I was depressed. On others I couldn't stop painting, usually planets or moons, or identified wildflowers compulsively. Then along came a fungi obsession, where I would walk for hours to find a specific mushroom. My sensory idiosyncrasies went haywire. The drone of a bathroom fan through the bedroom wall was physically and mentally distressing.

Something wasn't right. A doctor agreed and referred me to a mental health team but everyone else was also having a mental health crisis. Months went by before I even received a preliminary phone call.
Fortunately, in 2021, there was a moment of serendipity. I was producing Smart Women, Male Genius, which examined the sexism from scientific and social attitudes towards intelligence.

Autism conditions range from debilitating speech, language and cognitive issues requiring lifelong care to milder social problems. Like everyone else, the condition covers a range of IQs. While researching intelligence, I discovered that – despite no proven link – genius was often associated with a form of autism known as Asperger's Syndrome. This contributes falsely to the notion that most geniuses are men since more men are diagnosed with Asperger's.

I booked biochemist Camilla Pang for the programme. She was diagnosed with Asperger's as a child and wrote the award-winning book, Explaining Humans, about her condition. Reading it became a series of light-bulb moments. After our pre-interview, I mentioned how many of her experiences chimed with mine and that it had made me contemplate getting an assessment for autism. She thought it was a great idea.

In my county there is a two-year waiting list for a child autism diagnosis. It is much longer for adults, so I found a reputable company and paid for a private assessment. It involved several extensive questionnaires and consultations with psychologists. One interviewed my mother for several hours about my behaviour as a child.

While awaiting the results, I realised that if autism didn't account for my behaviour, the frequent misunderstandings and other unintentional upsets, my family was right. I had foot-in-mouth disease instead.
The positive diagnosis of ASC still floored me. It was painfully clear from the report, for instance, that I had little awareness of how my behaviour was perceived during the assessment. After reading how I had effectively monologued (my word not theirs) about some of my favourite topics, I felt acutely embarrassed. In some of the simple social exercises, there was an almost laughable disparity between how well I thought it had gone and their clinical judgement. My eye contact was not always great either.

It uncovered things I knew: I didn't speak until I was 18 months old and then it was the sentence "look at the lights" at Christmas. It also uncovered things I didn't know, or perhaps refused to remember: hair loss through stress between the age of 11-12.

At the end of the detailed 30-page assessment, six of the nine recommended books were about Asperger's.

The assessment is helping me, and my husband, understand my behaviour and anxieties. He believes it is why I found being a science correspondent excruciatingly stressful.

News, by definition, is all about change. But unlike most news journalists (including him), I hated any updates or breaking stories because they upset my plans. Basically, I was in the worst possible job for someone who gets anxious over unexpected changes.

It also explained why I gravitated towards longer-form documentaries and wrote Wally Funk's Race for Space. These activities are far less stressful, indulge my obsessions and reward attention to detail, since I hone in on the minutiae. This is a good quality for editing but can sometimes be at the expense of the bigger picture.

After returning from Heathrow Airport via a local taxi firm, I couldn't recall the driver's name but described, in huge detail, a large intricate tattoo on the man's left arm. My husband was astounded. "That's the driver with one arm."

I honestly hadn't noticed.

During the assessment exit interview, the psychologist said many of their autism clients had also reported worsening symptoms during the pandemic so the most important action right now is controlling my anxiety.

Family and friends have been incredibly supportive. No one was overly surprised. It turns out several family members have autism, far more than I realised. More importantly, even in my limited personal discussions so far, it has encouraged one young woman – whose symptoms mirror mine – to start her own diagnosis path. Another friend is finally getting her daughter assessed after realising she was just like me.

This is why I've gone public about having autism. This new understanding of life is a huge gift. I wish I'd got a diagnosis earlier. Admittedly, I'm still processing it all but no longer view myself as broken. I am simply wired differently. And that's OK.