After battling with social awkwardness and depression for most of her life, CAROLINE HEARST was finally diagnosed with autism spectrum disorder at 55. Now her mission is to raise awareness of ASD, which is often under-diagnosed in women and girls

'I couldn’t understand why it was difficult for me to fit in and make friends'

While reading an article about the symptoms of autism Caroline Hearst had a lightbulb moment – realising, at the age of 55, that she was on the autistic spectrum herself. Her diagnosis five years ago of autism spectrum disorder (ASD) – a lifelong neurodevelopmental condition which affects a person’s ability to relate to others, as well as how they process the world around them – came as a huge relief.

It made sense of Caroline’s difficulty making friends, keeping jobs, and explained the depression that had blighted her life. ‘When I found out, it was revelatory. Everything fell into place,’ she says.

Caroline as a child

Like many she was misled by the stereotypes around autism, which often paint an extreme picture of a Rain Man-type figure with a gift for numbers but no empathy. Males are four times as likely as females to be diagnosed with autism but Caroline believes that ASD is under-diagnosed in women. Also, though childcare experts have become more alert to the signs of autism, when Caroline was growing up in the 1950s the condition had only recently

been identified.

Now she feels so strongly about supporting other autistic men and women that she has set up Autism Matters, a social enterprise that aims to spread awareness of the condition and offers seminars for therapists,

family, friends and employers, plus individuals with ASD. Her mission is to raise the profile of the condition so that people are not upset if they or a family member are diagnosed with it. She says, ‘A lot of my depression was down to the fact that I couldn’t understand why it was so difficult for me to fit in and make friends. Everyone else seemed so much more relaxed. I always felt on the outside.’

After discovering she had ASD Caroline was keen to meet other people on the spectrum and went along to a support group in Christchurch, New Zealand, where she was living at the time. ‘Non-autistic people say, “I am really nervous in social situations, too”, but it’s not the same. Comparing ordinary anxiety about social situations to autistic social anxiety is like comparing my concern about swimming across a river (I am a good swimmer) to that of a nonswimmer. I might be anxious because I don’t know a particular river and its currents, but I can swim across rivers. Without outside help a nonswimmer will drown whatever the conditions. Similarly, without help I would struggle in social situations.’

Caroline is raising the profile of ASD through her Autism Matters training sessions. Opposite: aged three at the family home in North London

Caroline was born and brought up in North London by Jewish parents who had been refugees from Nazi Germany. Initially, her problems weren’t apparent and, although Caroline didn’t have a huge group of friends, she coped fine within her own small circle at primary school and later at her girls’ grammar school. It wasn’t always plain sailing. ‘I was very literal – it would take me an extra second to get sarcastic jokes. My intellect would tell me it was a joke but I wouldn’t get it instinctively. My friends’ parents thought I was “shifty” because I found eye contact hard. I still do when I’m not relaxed but I’m OK with people I know well.’

Her oversensitivity to outside stimulation – a classic symptom of autism – also had a big impact on her day-to-day life. ‘I’m hypersensitive to taste,’ says Caroline. ‘I can’t eat something out of politeness, I’d be sick. I used to detest school meals and I’d be kept in for the whole lunch hour until I ate it – but I never did. I’m sensitive to sound, too. ’

For Caroline, the difficulties thrown up by ASD became apparent when she hit her teens. ‘I couldn’t bear flirting,’ she grimaces. ‘If I was attracted to someone, I’d go silent and bright red. It was hell.’

When she was 16 her mother died from Hodgkin lymphoma at the age of only 48. ‘My mother and I weren’t terribly close but everyone attributed my depression to her death,’ says Caroline. Her troubled family history as the child of refugees became the way she made sense of that feeling of always being an outsider.

Caroline’s problems became worse when she went to Manchester University to study economics. The impersonal environment away from home and familiar faces threw her. ‘I didn’t make friends and had a horrible year.’ Dropping out of university and returning home, Caroline attempted suicide by taking an overdose of antidepressants. ‘It wasn’t attention seeking, I wanted to do it. I was beside myself when I woke up and was still alive,’ she says.

According to Dr Judith Gould, director of the National Autistic Society’s Lorna Wing Centre for Autism, Caroline’s story is typical of women with ASD. ‘Autism is often not picked up in women or misdiagnosed. They are referred to us suffering from anxiety and depression.

Caroline aged five at school she had difficulty understanding jokes and making eye contact. Below: today at one of her Autism Matters seminars. ‘I know I have expertise in the subject,’ she says, ‘so now it’s easier to connect and share with other people’

‘Girls might cope in the early years but in their teens things become difficult. They may struggle to get a job or, when progressing up the career ladder, get into trouble for not behaving appropriately. They can’t pick up on subtle social cues such as body language. If you can’t do that instinctively it’s mentally exhausting. Most of them feel relieved at the diagnosis and finding out why they are different. It’s not a label, it’s a pathway to getting the right kind of care and support.’

Caroline explains that she finds it easier to interact with people when there is a purpose, such as the working relationship with colleagues. ‘I’m all right at the casual beginning and when friendships are established but I struggle with the “getting to know somebody” stage. I find it more difficult to deal with neighbours than with colleagues.’

In spite of her difficulties, in her 30s Caroline developed a relationship with New Zealander Ralph – a project manager, whom she met after advertising for a flatmate – and the couple had two sons. ‘While it was difficult to interact with men if I was attracted to them, it was easier as friends; men tend to be more direct and they appreciated my straightforward nature. Ralph and I were friends before he asked me out.’

In the 90s Caroline and her family moved to New Zealand where she worked as a consumer adviser in mental health. ‘My training as a psychotherapist and experience of depression meant I was ideally placed for the role. I looked fine for the job on paper but I was hopeless in meetings. I struggled to get my point across and in the right tone. It was horrible.’

She continued to battle depression on and off until she read that magazine article in 2009. Understanding why she struggled socially, and at work, meant she no longer felt inadequate.

Unfortunately, her relationship didn’t work out. ‘I was never a very good housekeeper and while Ralph accepted this in the UK, he seemed to want more of a “little wife” type in New Zealand.’ The pair separated and in 2011, after her sons had left home, she moved back to England while her boys stayed on in New Zealand.

The diagnosis also allowed Caroline to understand other members of her family better. She believes her eldest son, 24, is on the spectrum, although he doesn’t have an official diagnosis, and she now feels that her brother and late father were also on the spectrum. The causes of ASD are being investigated but there is evidence that there is a genetic element in the development of the condition.

Caroline believes an earlier diagnosis would have been invaluable in helping her to bring up her eldest son who was a challenging child. ‘I would have parented him differently – kids on the spectrum need more routine and consistency.’

‘Autistic girls go under the radar because they present as shy and passive – they mask their symptoms,’ says Dr Gould. ‘They pick up on this need to be sociable; they watch and imitate but they’re always on the periphery.’

'Autistic girlsgo under the radar because they masktheir symptoms'

Making friends was never an issue for Caroline’s youngest son Nat, 21. ‘He has always been popular and living in a family of autistics has helped him develop a sense of compassion. After I separated from the boys’ father, Nat was the most mature and a peacemaker between us all.’

Caroline believes her autism has had a negative impact on her career development. ‘I built up lots of qualifications – I trained as a librarian and an art psychotherapist. I was fine on theory but meeting people was so difficult as I couldn’t get beyond focusing on what they thought of me.’

Her diagnosis has enabled Caroline to pinpoint some of the areas where she was coming unstuck. ‘I no longer tell people if they make a trivial mistake. What matters is having a positive objective and not getting sidetracked by correcting “incorrect” actions – especially if it will upset people.’

Caroline has also learnt to take a more considered approach to life. ‘Before I tended to complain if I thought something was unreasonable. Now I do a cost-benefit analysis. I am more aware of the feelings of the other party in any interaction.’

Caroline now recovers more quickly from awkward social situations. ‘I always had social difficulties. Now I accept those differences, which ironically makes them easier to live with; I realise my social radar is missing. I don’t put pressure on myself to be something I’m not.’

Because of the revelatory effect of her diagnosis Caroline is passionate about spreading awareness of ASD and getting people on the spectrum diagnosed. She set up her social enterprise Autism Matters with advice from the School for Social Entrepreneurs and this is now a full-time job. ‘Not a single therapist I saw for my depression picked up on my autism. A lot of people with ASD have been made worse by the ignorance of professionals.’ She is also in the process of securing funding for a peer support group for women.

Caroline believes that sometimes it’s helpful to disclose your autistic status to others but not always. She says, ‘In work situations you could explain something about your sensitivity to sound

– without going all the way. You don’t know how people are going to react; some people discount you once they know you’re autistic. It really depends on the understanding of the person.’

Addressing the group in one of her Autism Matters training sessions – a mix of therapists, parents of children with ASD, social workers and teachers as well as men and women recently diagnosed with ASD in adulthood – Caroline comes across as confident. ‘I think it’s because I’m fulfilling a role while being myself. I’m in control and have a purpose. I die in group situations where I might be picked on to contribute. I’ve been known to win raffles and not claim the prize.

‘But once I became comfortable with the idea that I have some expertise in this subject, I became relaxed. I enjoy connecting and sharing and thinking about things from different angles.’