A lot of adults are receiving autism diagnoses later in life. Photo / Getty Images
Sue Nelson, a successful journalist, says her diagnosis provided a previously missing piece in the ‘jigsaw’ of her life.
If you watched the BBC in the years between 1997 and 2005, you might have caught Sue Nelson, then the science correspondent, explaining how stem cells and cloning work, or what exactly happens if you go near a black hole. At 64, she is fun, confident, sharp – and one of the many women in Britain who have been diagnosed with autism in midlife or later.
“Getting to a later age, you realise that you’ve got this jigsaw of your life that’s nearly complete,” Nelson says. “Being diagnosed with autism at that stage is like realising that there were several pieces missing all along, and you weren’t aware of it.”
Suddenly, she understands why she has always found it hard to “accept sudden, last-minute changes”, even as small as getting off the bus a stop early, and why social anxiety has always been a part of her life, even though she would happily present on TV “in front of millions of people”.
Nelson is far from alone, says Punit Shah, an associate professor in applied psychology at the University of Bath. Autism “is really quite a new term”, Shah says. “It’s only in the last 60 years or so that it has been formally diagnosed.” What has traditionally been thought of as a condition of childhood is now, in fact, a condition of adulthood. “Now that autism is more widely diagnosed, most of the autistic people in Britain are adults, if you look at the average age,” says Shah.
It does not help that until 2021, GPs, on the advice of Nice, the health authority, were using “the wrong cut-off points in their initial assessments after people came to them describing symptoms of autism”, Shah says. “Potentially thousands of adults went to their doctors seeking a diagnosis, or in need of support, and were turned away as a result.”
When Nelson was at school, children who were “very inflexible” or “the biggest swot ever”, as she describes herself, were expected to fit in with the rest of the world as they aged. But of the estimated eight million people in Europe who are autistic, 20% are aged 65 or over, recent research suggests.
A few years ago, “I’d only very occasionally see someone aged between 60 and 70 who had been referred for an autism diagnosis”, says Dr Sue Smith, who leads the diagnostics and assessments service for the National Autistic Society. Now, she sees “closer to one person a month, though it comes in spurts”.
No one collects figures for the number of people in Britain who have been diagnosed with autism in their 40s, 50s, 60s or beyond, but there is “absolutely a lost generation of people who missed out on being diagnosed with autism as children”, agrees Dr Hannah Belcher, a lecturer at King’s College, London, and an expert in the late diagnosis of autism in older adults.
It is clear that receiving a diagnosis “can be transformative”, Belcher says, but autism assessments and the tools used in them “are designed with children in mind”, she believes. “We don’t know nearly enough about what it’s like to have autism in later life; how it’s perceived by others but also what the experience is like for the people with it.”
Like many older adults with autism, Nelson received her diagnosis during the pandemic. In 2020 she was working on a series of weekly podcast interviews with “people around the world who were in terrible distress”, she recalls. There were firefighters who removed dead bodies in New York, a young doctor who’d treated his own father in hospital in India, medics in Italy “who were having to deal with the most horrendous death rates”. This was not her first batch of tough jobs “but there’s an autistic tendency to mind-loop”, Nelson explains.
“I was permanently looping everything these people had said, and the trauma that they were going through, the unhappiness and the death. I was waking up in the middle of the night, and I was hearing their voices non-stop on repeat in my head.” Then, the fan in her en-suite bathroom became so unbearably loud that “I found myself in bed in a foetal position, absolutely in pain because of the sound”. Her husband had to turn it off for her and calm her down. “To be honest, I thought I was going mad.”
Now she knows that she was in the midst of “an autistic meltdown”, where “the sensations and everything in your head just becomes an overload”, as she puts it. She had read about autism in the past, as a science journalist, and had taken “every online test there was”. But she had learnt to navigate life so effectively that it had never before occurred to her to seek a formal diagnosis.
After being told by her local mental health team that she faced a six-year wait for an assessment, Nelson contacted a private medical company in Cambridgeshire, whose doctors had all worked in the NHS before. As they would for a younger patient, the doctors wanted to speak to Nelson’s parents to understand her behaviour and development as a child. Her father had dementia, but “they did a long interview with my mum”. Nelson then received her official diagnosis, in a 30-page PDF. “It came from pain and distress, but at least it has brought with it some understanding and some explanation.”
Not all adults who are diagnosed with autism later in life experience a “meltdown” as acute as Nelson’s, but the stresses of midlife can often prompt people to seek out diagnoses for autism or other conditions such as ADHD or dyslexia. “The menopause, for example, can significantly affect autistic women and really exaggerate their sensory difficulties and emotional difficulties,” Belcher says. “Lots of older adults also seek diagnosis after their children or grandchildren have been diagnosed with autism.”
Autism diagnosis is a lengthy and rigorous process, “which means that a majority of the people who reach the stage of completing an assessment do receive a diagnosis”, says Dr Smith. Parent interviews as well as extensive one-to-one sessions and psychometric tests are common. In full, the results can be incredibly confronting.
As part of her report, Nelson was given an “empathy score”. It was “shockingly low”, she says, despite the fact that her diagnosis came about because of the extent of feeling she had for the people she interviewed.
Nelson and her husband, Richard Hollingham, met at the BBC. The two fell in love after working on a science report together and were married in 1998.
Hollingham had supported Nelson throughout her meltdown and the wait for the result of her assessment, but she held back from sharing the full report with him. “I do not think of myself as having low empathy at all, and I was so ashamed that I didn’t tell anyone about the score, not even my husband,” says Nelson.
“I’d send him little bits [of the report], but when he wanted to read the full thing I’d just fob him off, because I didn’t want him to read that bit about low empathy.” She only shared it in full after waiting for “well over a year”.
As a science journalist, he only “found it fascinating”, Nelson says. Autistic people have empathy in abundance, she points out – it just works differently for her, and other people who have autism, compared with people who don’t have the condition. She is now writing a book about the topic. “Some might struggle with different types of empathy and understanding, but you cannot use that to say that all autistic people have no empathy at all,” she says. “I think it’s deeply damaging. It’s wrong, it’s insulting, and the science is showing that too.”
Society at large still does not take kindly to people who struggle with overstimulation, or find it hard to socialise. For many autistic people, that means living with a constant fear of offending others. Nelson – who is “very good with faces, but bad with names” – recalls accidentally referring to a man on her pickleball team as “the bald guy”. Fortunately, “he was brilliant and we just laughed about it, as opposed to me being sent to the corner of a room to put my head against the wall, which was what happened when I was younger”.
For older autistic adults who have had to cope their whole lives without support, finally receiving a diagnosis “is often an experience that comes with mixed emotions”, says Shah. “It really depends on the person and their life circumstances. Our research shows that age of diagnosis is not a determinant of quality of life in autistic adults, but that the extent to which they showed autistic personality traits was an important factor.”
There have been ups and downs in the four years since Nelson was diagnosed, but her message to anyone her age who suspects they may have autism is simple. “Don’t be afraid of discovering something new about yourself. Like everything else, it’s never too late to learn about yourself. Otherwise, you’re going through life not knowing that you’ve essentially been blindfolded.”