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The Northern Ireland women living with autism, just like I’m a Celeb’s Anne Hegerty

As Anne Hegerty, the Governess from ITV’s The Chase, reveals her battle with autism, Stephanie Bell talks to two women who were diagnosed with Asperger’s Syndrome as adults

By Stephanie Bell

Two women who, like Anne, only discovered in adulthood they had been living with autism, give a powerful insight into the challenges and benefits of living with the condition.

Claire Burke (45), from Belfast, was diagnosed at the age of 35 with Asperger's Syndrome.

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Strict routine: Claire Burke says she had rituals and if she deviated from them, it would result in difficulties
 

She believes Anne is a winner for daring to enter the jungle and put herself so far outside her comfort zone.

Throughout her childhood, Claire's mother took her to many doctors, who all failed to diagnose her autism. She grew up knowing she was "different" but not understanding why.

"Doctors actually told my mum that I was just a weird child and there was nothing to worry about," she says.

"My behaviour was classic autism. I would spin for hours on end and I wouldn't interact and I would stop speaking because I saw no reason to speak.

"Also during my childhood, I stopped eating at one point because I didn't like the shape or texture of my food.

"As a child, I felt alienated, but not in a bad way because I didn't feel I needed social interaction. I didn't understand playtime at school. I still don't see the point of social interaction.

"People make small talk and I find it very confusing. I don't see the need for it and I don't speak unless I have something to say."

As she grew into adulthood, Claire began to increasingly live her life by a strict routine, the slightest deviation from it causing her to break down.

It was this which led to her seeking psychiatric support and her eventual diagnosis at the age of 35.

She says: "I would have these rituals which if for some reason I didn't do in the order I expected, I would have a complete meltdown.

"For instance, I had to make my bed as soon as I got up, but if for some reason I didn't, that would have been so stressful and I would have been crying and breaking down because I broke my routine."

She did work in administration in her 20s, but again, her dependence on routine made it very difficult for her.

She explains: "If I was asked to do something outside of my routine, I would have had a breakdown. Work became overwhelming for me and in the end, it was actually due to other health problems that I had to leave."

She did go back in her 40s to Queen's to study for a law degree and because of her autism felt very isolated at university. "It was so stressful. I was very much on my own - the disability services didn't know a lot about autism," she says.

"One of the awful things about it is that people say to look at you, there is no way of telling you have autism and I found a complete lack of empathy and the attitude that as an adult, you should know better. In fact, a lot of people think it is a childhood condition."

Claire had a good idea she was autistic and her diagnosis meant she could explain her behaviour to others.

A fan of the TV show, I'm a Celebrity, she says she really admires Anne Hegerty for going into the jungle and also for raising much-needed awareness of autism.

"I knew Anne was autistic before she went in and when I heard she was going in, I just thought, 'How brave is she to go into that environment out of her comfort zone'.

"The smells, the sights, the sounds in there would be complete sensory overload for someone with autism. She is a winner in my eyes, no matter what happens. I was very interested to see how she would cope and how she would tell other people about her autism. We are very straightforward and brutally honest people."

Claire adds: "I would like to see her open up a bit more. She did touch a nerve with me when she talked about how difficult it is for her to have a relationship. I have had the same problem because people don't understand how autism affects you.

"I think as the show goes on, we will see more of her Asperger's coming to the fore and it will be interesting to see how people react."

Anne Hegerty has become a national hero since opening up about her struggle with Asperger's Syndrome on I'm A Celebrity.

The well-known quiz master from ITV's The Chase confided to camp mates that she was struggling to adjust to life in the jungle because of her autism. The 60-year-old also revealed she was 45 before she discovered she was autistic.

Her honesty has done a lot to raise awareness of autism, with so many people going online to find out more that the National Autistic Society's website crashed.

Shirelle Stewart, director of the National Autistic Society Northern Ireland, says calls to their helpline have also dramatically increased since Anne's TV revelation.

"We've loved seeing the outpouring of support for Anne Hegerty and we hope that this will be the start of better representation of autistic women in the media and help everyone understand the diversity of autism," she says.

"Being in the jungle is a challenge for everyone, but for someone who's autistic, the unexpected changes and sensory challenges in the Bushtucker Trials and new environments in camp will be even more intense - and could sometimes even be physically painful.

"We have also been inspired by the support and understanding of the other camp mates and we think they're a great example to everyone.

"It was lovely to see Nick Knowles offering Anne his pillow and Rita and Fleur checking up on Anne. All this is proving that a little compassion and understanding is sometimes all that is needed.

"This is a big moment for autism and autistic people. Since Anne has spoken about her autism journey, we have seen an increase in inquiries to our helpline, with individuals wanting to speak about getting a diagnosis. Whatever the outcome of the show, Anne is the winner in our eyes."

'When I was told I was autistic, I felt a huge sense of relief ... everything made sense'

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Family time: Maura Campbell with her 11-year-old son, Darragh
 

Maura Campbell (51) was diagnosed with Asperger's Syndrome when she was 44.

Maura, who works in the Department of Justice, is also a senior editor and features writer for Spectrum Women, a free online magazine by and for women on the autism spectrum.

She is also co-author of the book, Spectrum Women - Walking to the Beat of Autism.

Married to Stephen (44) and mum to Darragh (11), the family lives in Killyleagh, Co Down, with Baz the cat and Ash the Assistance Dog (who has his own Facebook page).

It was only when her son, who is a pupil of Knockevin Special School, was diagnosed with ASD in 2010 that Maura started to learn more about autism and suspected she might also be on the spectrum.

She says: "I'd been aware for a long time that there was something 'different' about me, and that was definitely much harder to deal before I knew why.

"I got very frustrated with myself when I struggled to cope with everyday situations that didn't seem to bother other people, like feeling out of my depth at social events.

"I would often end up feeling emotionally drained, overwhelmed and exhausted. It sometimes put a strain on personal relationships and I didn't have the right vocabulary to explain to other people - or even to myself - what was going on." She has also found that she needs to take time out to recharge her 'social battery'. Sensory sensitivities from fluorescent lights, certain fabrics/labels, loud noises or combinations of noises all cause her great discomfort.

Maura says discovering she was autistic in her 40s came as a great relief after many years of feeling "different".

She says: "When I was told I was autistic, I immediately felt a huge sense of relief. I finally had an explanation for why I was 'different' and suddenly everything made sense.

"In the book, I described it as 'like taking off a corset I didn't know I had been wearing'.

"I was elated at first, then went on an emotional rollercoaster as I grieved for the little girl who had felt so lonely and misunderstood (though that was no one's fault).

"I was still on a learning curve at that stage, since autism is a hugely complex condition which affects each individual in a uniquely different way.

"I have never had any regrets about pursuing a diagnosis and it has made a very positive difference in my life. I'm now more confident as a parent. I have better coping strategies for when things get tough.

"I'm kinder to myself, I can advocate better for my needs, as well as for my son's, and ask for the right accommodations (which are usually pretty minor, but small things can make a big difference, like getting an uplighter in work).

"I feel part of a community, and I have made wonderful friendships.

"I have spectrum sisters around the world who I know I can reach out to whenever I need them and the bond we have is incredible - I truly feel like I have found my tribe."

She is delighted that Anne has talked about her struggles with autism.

"While it's hard to watch her struggle, I think Anne's participation in the show has provided a fantastic opportunity to improve understanding of autism, including how it presents in women, among the general public," she says.

"I welcome celebrities being open about being autistic because it helps to provide positive role models for young people and show that while autism is not without its challenges, there are many positives as well.

"In Anne's case, she has a phenomenal memory and her general knowledge is encyclopaedic.

"Putting herself in a situation where she knows she will be so far out of her comfort zone is truly courageous and I commend her for that."

Maura feels strongly that the positives of autism not only need to be acknowledged, but celebrated.

She adds: "Autistics tend to be honest, loyal and sincere, and most of us have a great sense of humour.

"A lot of us are extremely creative and our intense interests allow us to develop expertise that can often bring benefits to the workplace.

"Organisations like Specialisterne NI are helping to harness those talents and help young autistic people into employment. Unfortunately, a lot of negative stereotypes still persist, but I think that will change as people start to think differently about difference."

A disability affecting communication and interaction...

Autism is a lifelong disability which affects how people communicate and interact with the world.

There are approximately 700,000 autistic adults and children in the UK.

Without the right support or understanding, autistic people can miss out on an education, struggle to find work and become extremely isolated.

Although everyone is different, people on the autism spectrum may:

  • Be under or over-sensitive to sounds, touch, tastes, smells, light or colours, which can make everyday life extremely difficult.
  • Find social situations and change a challenge, sometimes leading to extreme levels of anxiety.
  • Experience a 'meltdown' if overwhelmed by anxiety or sensory overload.
  • Benefit from extra time to process and respond to communication.

Autistic women and girls

  • Recent research suggests that the number of males and females on the autism spectrum is far more equal than previously thought and diagnostic statistics suggest.
  • There has been a steady increase in referrals of women and girls at the National Autistic Society Lorna Wing Centre for Autism.
  • The problem is that professionals often don't understand the different ways autism can manifest in women and girls, with many going through their lives without a diagnosis and an understanding of why they feel 'different'.
  • This is because past research has largely concentrated on males, which means the way we understand autism tends to be very much based on the experiences of autistic men and boys.
  • Every person on the autism spectrum is different. But, as a rule, women are often better at developing ways to mask what we traditionally think of as the signs of autism, which can make it harder to diagnose.

This 'masking' can lead to a great deal of stress and many women and girls go on to develop secondary problems such as anxiety, eating disorders or depression.

The National Autistic Society exists to champion the interests of all people on the autism spectrum. It has branches throughout Northern Ireland.

For more information go to www.autism.org.uk.

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