Carole was told she was rude, antisocial and ‘possessed by the devil’. It was only when she was 46 that she discovered what the issue really was… this is why all women must hear her story

As a child Carole McNally was criticised for being cold and off-hand.

‘I’d speak in a matter-of-fact, perhaps curt, way that might be perceived as rude, but I didn’t understand why I was being called curt or rude,’ says Carole, now 50 and a tech business owner.

Indeed, her foster parents (who Carole lived with from the age of six), were strict Catholics and told her that the way she interacted with others was evidence she was ‘possessed’ by the devil, with Carole encouraged to say prayers at night to be freed from his grasp.

‘I’d go to bed uttering these prayers, believing everything they said,’ she recalls.

Despite this, Carole was a straight A pupil. She was aware, however – first in the playground, and later at work and other social situations – that she was definitely ‘different’.

For years she battled with feelings that she did not fit in, leaving her at times anxious and on edge about how to behave.

And then a few years ago her youngest son, then 13, was diagnosed with autism. Suddenly, the penny dropped.

‘As I heard the psychologist ticking his traits off the list – he was non-verbal, late to walk, preferred to draw rather than communicate – I sat there thinking back to my childhood and just thought: That’s me!’

While she wasn’t non-verbal, Carole wasn’t good at communicating.

A few weeks later, she saw her GP and was referred to a psychologist.

‘It took him about ten minutes to diagnose me as autistic,’ she says.

‘I was 46 years old. Suddenly all the ostracising; the being accused of being rude; the inability to make friends; the way my foster family treated me – all of it made sense. There was nothing “evil” about me. I was autistic.’

Carole’s experience is typical of many, according to experts.

‘Hundreds of thousands, possibly over a million, autistic people in the UK are undiagnosed – many of them adults, and women in particular,’ says Dr Katie Barge, a psychologist based in Gloucestershire who specialises in autism assessments.

In fact, up to 90 per cent of middle-aged and older people with autism are undiagnosed, with the numbers rising with age: one in four people with autism aged 19 and under, and half of those aged 20 to 39, were undiagnosed. This rose to 89 per cent of those aged between 40 and 59, and 96 per cent of those aged 60 and over, according to a review published in the Annual Review of Developmental Psychology earlier this year.

This follows a study in 2023 by University College London which found the true number of people living with autism in England to be around 1.2 million – double the number often cited by health officials.

Commenting on the findings, in the Lancet Regional Health – Europe in 2023, the lead researcher Elizabeth O’Nions said they were evidence of ‘a substantial diagnostic gap in adults compared to children and young people when it comes to autism in England’.

Instead many adults, especially autistic women, are diagnosed with mood, anxiety or personality disorders. ‘Their relational difficulties are attributed to other conditions and autism is missed’, says Dr Katie Barge.

Typically, as with Carole, it’s their child’s diagnosis with autism that leads to the mother’s diagnosis. Research shows that ‘over 60 per cent of women with autism were diagnosed or realised they were autistic after their child’s diagnosis’, adds Dr Barge.

Children may express their autism differently from adults – displaying more pronounced difficulties with social interaction and communication, restricted and repetitive behaviours and interests, and sensory differences – for example, being highly sensitive to certain sounds, says the child psychologist, with the child often mislabelled as ‘bad’ or ‘naughty’.

‘And this creates deeply embedded feelings of shame, chronic anxiety and low self-worth.’

In adults the signs can be more subtle – such as repetitive behaviours or not being able to read situations.

And it is women who are most likely to be undiagnosed, says Dr Barge.

‘Autism has historically been defined through a male lens, so diagnostic tools were built around how autism presents in boys – that is, more obvious social communication and interaction difficulties and repetitive behaviours,’ she explains.

‘Girls tend to have more advanced social communication skills and are, therefore, far better at “masking” – meaning they consciously or unconsciously copy social behaviours to fit in, suppress their discomfort, and develop “camouflage” strategies.

‘What’s more, their interests [such as books, animals, celebrities] may seem typical of being female – even if the intensity of that interest is “autistic” in nature, such as deep, encyclopaedic knowledge about animals, horses, specific book series or K-pop groups.

‘They may also meticulously curate collections of things, such as stationery or skincare, or develop rigid routines and have a hyper-focus on social rules, fairness or friendship dynamics.’

Other signs include ‘perfectionistic immersion in writing, art, languages or fashion – doing hours of research, making systems/lists – activism or niche justice topics pursued with adult-level depth for their age’, explains Dr Barge. ‘And these can be misread as anxiety, perfectionism, or shyness, rather than autism.’

Carole was a classic case – getting through schoolwork with ease, but struggling to know how to approach social situations.

‘I’d become fixated on things,’ she recalls.

‘I remember doing Macbeth at GCSE and spending hours and hours in the library studying everything there was to learn about it. Needless to say, I got an A.

‘I just couldn’t function in other ways. I remember a teacher taking my books away at school and telling me I had to go play with the other kids instead of reading.

‘I just stood on the edge of the playground, staring out, because I didn’t know how to join in.’

Carole adds: ‘When my peers told me I needed a boyfriend or that I should act a certain way, I went along with it – not because I wanted to, but because I thought it was what I was supposed to do.

‘I often misunderstood social signals and still have an intense sense of justice.

‘I also struggled with anxiety because I didn’t understand why I was so different from everyone else, or why I didn’t fit in or want to do the same things other children did.’

Carole did what she could to fit in, getting a boyfriend and even marrying at 17 and having three children. But sadly her marriage broke down and Carole left, taking the children. (She has not been contact with her foster parents for over 30 years.)

No one ever mentioned her being autistic she says, ‘they’d just say I was odd’.

‘Many late-diagnosed autistic women describe growing up feeling different and ostracised without knowing why,’ says Dr Katie Barge.

‘Their subtle social differences – being literal, intense, or struggling with unwritten rules – often make them targets for bullying or social exclusion.

‘Without understanding or support, they internalise this as “something’s wrong with me”, which can lead to chronic anxiety, people-pleasing, shame and perfectionism.’

Without a diagnosis to understand why they feel ‘different’, people with autism may develop secondary mental health problems such as anxiety, depression or eating disorders, adds Dr Barge.

The situation is, however, improving since the 1980s and 90s, when ‘autism diagnosis focused almost exclusively on boys with clear language or learning differences’, says Katie Barge. ‘Many girls and high-functioning individuals were simply unseen, due to their compliance in the classroom.’

Now women are being diagnosed at a faster rate than men, according to Dr Barge.

The diagnosis ‘can bring both grief and relief’, she says. ‘Many adults look back and finally understand years of exhaustion and social confusion.’

Once they are diagnosed they have more self-acceptance and may pursue a lifestyle or career ‘that accommodate for particular needs and sensitivities’.

Carole was grateful for her diagnosis as it underlined that she was not ‘naughty’ or ‘strange’, adding: ‘Nor was I possessed by the devil.’

She says not all of her symptoms have been a hindrance.

When she got a job doing maternity cover on the reception of a tech company, she used her ‘hyperfocus’ to her advantage. Carole learnt all there was to know about the business, teaching herself coding and computing, and soon rose through the ranks.

‘Suddenly life was good,’ she says.

‘I was using the hyperfocussed part of my personality to thrive in my career, but I still felt “off”.’

There she also met a new partner, Casper, now 53, and they had a child together.

When she was diagnosed, Carole says Casper was not surprised as he had ‘suspected it for a while’.

Now she runs her own tech business, TechWitch, and has started a charity, Atypify, to help autistic children reach their potential in STEM (science, technology, engineering and maths).

‘As a neurodivergent woman, I understand the challenges faced by people on the spectrum,’ she says.

‘It took 46 years for me to be diagnosed with autism. That’s four decades in which I was made to feel I was rude, wrong and antisocial – and finally I feel I have validation not only for who I am, but to help others.’