At school, Jan Gywnn, now 74, always had trouble making friends. Holidays were spent largely by herself, reading in her room.
‘I didn’t get on with other people and was hopeless in social situations,’ she says. ‘It made me feel very alone.’
It was a feeling that has followed Jan throughout her life. At office parties, the former finance worker found herself standing alone, unable to think of anything to say. ‘I’d be watching the handbags, while everyone else danced and chatted,’ she recalls, dolefully. Inevitable last-minute changes to social plans would send her into a tailspin of anxiety.
But now, Jan says she finally understands why she’s always felt like the odd one out. She is one of the estimated 600,000 older Britons – many now pensioners – with autism.
The condition, a developmental disorder which tends to appear in early childhood but is lifelong, can make it difficult for people to understand social cues or express themselves to others. Other symptoms include repetitive behaviours, such as rocking or arm flapping, over-sensitivity to light, sound, touch or taste and extreme anxiety.
Jan Gwynn, 74, believes she has autism after watching her granddaughter Tasha, 23, get a diagnosis
Diagnoses of the condition in the UK have soared by more than 780 per cent in the past two decades – as many as one in 36 children are now thought to be on the wide-ranging spectrum of autism symptoms – leaving scientists baffled as to why.
And experts speaking to The Mail on Sunday say it may be just as common in adults, but that the vast majority are undiagnosed.
For Jan, the realisation she may have autism came when her granddaughter Tasha, 23, was diagnosed just before going to university. Her other granddaughter Keira, 17, Tasha’s cousin, is also autistic.
‘As I was reading up about the condition, everything suddenly made sense,’ she says. ‘I just thought I was shy and introverted – similar to my granddaughter – but reading about autism traits and seeing Tasha get diagnosed made me realise that I likely have the same thing.’
Medical understanding of autism – and its spectrum of symptoms – has only really advanced in the past 40 years.
Others say long waits for assessment due to NHS backlogs – which see children prioritised – make getting a diagnosis not worth the effort.
Worryingly, autism has been linked to greater rates of depression, anxiety, loneliness, physical health issues and even a shorter lifespan. Yet specialists say that with a diagnosis, and the right support, there is hope.
Celebrities such as US actress Daryl Hannah, 64, Welsh actor Sir Anthony Hopkins, 87, and even controversial rapper Kanye West, 47, have gone public with their struggles with the condition. Now experts are calling for better diagnosis and more support for older adults living with autism.
‘As it stands, research indicates that there are a vast number of middle-aged and elderly people in the UK who don’t know they are autistic,’ says Dr Gavin Stewart, a researcher at King’s College London and an adult autism expert.
‘They’re not getting diagnosed due to years-long waiting lists, and they’re also not getting much support if they do manage to get formally diagnosed. If we know that autistic adults are likely to have worse mental health, less social support and more physical health issues, then the health service needs to do more to help them.
‘That could be offering more sessions with a therapist or psychologist, organising peer support, or working with doctors to ensure autistic people’s medical needs are met, even if they have trouble articulating them.
‘Only then can we improve their quality of life.’
Autism, which was first formally described in the 1940s, was once considered a vanishingly rare childhood disorder – doctors estimated that just one in 2,500 children had the condition, then known as childhood schizophrenia.
Jan Gywnn with her autistic granddaughter Tasha
Earlier this month, the Daily Mail’s TV critic Christopher Stevens questioned why, over the past 80 years, Britain has seen such an avalanche of autism cases – with 700,000 now diagnosed – in an article about his own son’s diagnosis.
‘How is this possible, that less than a century ago autism was unknown?’ he wrote. ‘Now, nearly every parent knows of families with autistic children, even if their own kids don’t have it.’
The truth is, experts are unsure. Research has shown that autism tends to run in families, but it has also been linked to environmental factors, such as having older parents, being born prematurely or being exposed while in the womb to pollution or pesticides.
Some believe changes to these conditions over the past few decades – whether an increase in traffic pollution, ingestion of pesticides and rising birth age of mothers – has caused the spike. Others say doctors are simply better at detecting it, with parents and teachers more attuned to the symptoms and therefore more likely to refer a child for testing.
Most cases are diagnosed by age five, though two-year-olds can now be tested by a psychologist who will examine their behaviour and social skills. Self-assessments are also available online, including the Autism Spectrum Quotient – a questionnaire developed by Cambridge University researchers.
Diagnostic guidelines have also been expanded to include Asperger’s and pervasive developmental disorder (PDD), both of which have subtler autism symptoms.
But experts say older adults are still being left behind.
According to a study from researchers at University College London, the number of autistic people in England may be more than double what is cited in national health policy documents.
Analysing anonymised GP practice data from more than five million people across the country, they discovered that more than a million adults may have autism and not know it. In fact, according to lead researcher Joshua Stott, professor of ageing and clinical psychology, as many as 90 per cent of all autistic patients over the age of 50 could be living undiagnosed – a shocking 600,000 people.
‘The diagnostic criterion was different when these people were younger,’ says Prof Stott. ‘And as they got older, and the guidelines expanded, they were still overlooked as autism was considered a childhood concern.
‘So it’s only now, having realised that autism is lifelong, that people may be becoming aware they could have it, or realise they could still get an assessment.’
Jan Gywnn says she’s unlikely to seek a formal diagnosis due to the time it takes on the NHS and the cost of getting tested privately, which tends to be about £2,000. Waiting lists for assessments in the UK are at an all-time high – with 200,000 people in line for screening as of 2024, a nine-fold increase from 2019.
But experts say it is still vital that older adults who suspect they may have autism get assessed for it.
Traits of the condition are similar in children and adults. They struggle to maintain close friendships and tend to feel like an outsider in social situations, as well as liking routine and having sensory preferences when it comes to certain foods or textures. But adults with undiagnosed autism face additional difficulties that only get worse as they get older.
Without strong social circles, many struggle as they begin to need more support from those around them.
Hollywood star Daryl Hannah, now 64, revealed that she was autistic in 2013
Being less likely than non-autistic people to be employed or in a stable relationship can also mean that they’re more prone to poor mental health and loneliness in old age.
And older adults with autism are even more likely to suffer from physical health problems, with research showing higher rates of obesity and poor cardiovascular health, which can have a ripple effect on life expectancy.
Because of this, says Dr Stewart, an official autism diagnosis can be crucial to getting the support they need.
‘To access help from the health service you need to have a diagnosis,’ he says.
‘The level of support depends on the local area, but most are offered some form of counselling to understand their diagnosis as well as peer support groups and sometimes even talking therapy with a psychologist.’
On top of this, says Prof Stott, for many older adults who have spent their lives struggling to fit in, an autism diagnosis can feel like a lightbulb moment.
‘They may have been told at school that they’re not very clever or naughty, or been subjected to bullying for being a bit different,’ he says.
‘So it can be very helpful – and relieving, psychologically – to be told that it’s because you’re wired differently rather than you have something fundamentally wrong with you.’
