A lifeline for female ‘Aspies’

Broadcaster and naturalist Chris Packham, presenter of Springwatch, introduced millions of viewers to Asperger’s Syndrome in his acclaimed BBC programme, Asperger’s and Me – but many may not be aware that women have Asperger’s too.

Local charity DASH – Discovering Autism Spectrum Happiness – has set up a women’s group to offer support and understanding to those with the condition.

Chris Packham was not diagnosed until 2005. All his life, he has struggled in social situations, had trouble with human relationships, and is, by his own admission, “a little bit weird”.

He experiences the world in a different way, with heightened senses that are at times overwhelming. He prefers to live on his own and has intense attachments to his animals.

Many women are also not diagnosed until they are adults and struggle with the condition for years. Three members of the Swindon DASH women’s project explained the difficulties and the blessings that Asperger’s can bring.

Annie Hubbard, 63, Drew Grimes, 21 and Eleanor, 42, all from the Swindon area, agree the women’s project – which meets once a week – has been a lifeline, giving them a chance to share their experiences with others who truly understand.

“I was 59 when I was diagnosed,” Anne said. “Once you have a diagnosis, things you know about yourself begin to make sense. It explained why I did not have friends as a youngster, and why I was always upsetting people and insulting people without meaning to.

“I had puerperal psychosis (a severe mental illness) after my daughter was born, and I have had psychotic breakdowns that mean I have been in hospital nine times. This is common for people who have not had a diagnosis.”

Her husband left when their daughter was one, and they divorced.

“I have been on my own ever since,” she said.

Despite these times of mental ill health, Anne sustained a career working for the British Association for Shooting and Conservation in north Wales for 20 years, as a firearms officer, advising the home office, police and hunters. She also gained a degree with the Open University in 2010 in Health and Social Care. Now retired, she enjoys knitting and reading.

“I hate surprises,” she said. “I don’t like changing things. I used to hate it when they changed things at work, and I was told I was childish for that. They kept throwing surprises at me and I hated it.

“I didn’t have any friends and I got bullied at school. I just didn’t fit in.”

According to the National Autistic Society, Asperger’s is a lifelong developmental disability that affects how people perceive the world and interact with others. It means problems with social communication, such as finding it hard to read facial expressions, and difficulty with social interaction – such as struggling to understand other people’s feelings and intentions.

It can also mean having repetitive behaviour and routines, highly focused interests and sensory sensitivity.

Hans Asperger, who identified the condition, initially believed only males were affected but many researchers believe women are under-diagnosed because they present differently and can be more adept at camouflaging their difficulties.

Drew was diagnosed with Asperger’s in June.

“I have gone my whole life knowing there was something about me that was different,” she said. “And I was constantly trying to figure out what it was. At school I was a goody-two-shoes, always followed the rules, and I got bullied for that. If you have no name for it, you feel like there is something really wrong with you.

“I could not socialise the same way everybody else could. When I was talking, I would go off on a tangent and talk too much and I did not understand when people got bored.”

Drew said she had intense enthusiasms – including the Addams Family, and the BBC television series Grange Hill. But most of the time she feels intensely anxious.

She would like to go to college to learn Korean, to be a translator, but said she found the last years of school very difficult.

“I know lots of random facts about things that are not that important but can be quite interesting,” she said.

Whenever she goes to a play or show, Drew has to make sure she is seated somewhere she can make a quick exit if her anxiety levels start to rise.

“I don’t like being enclosed in a room. Even if I am at the doctor’s or at a meeting in the bank I have to ask for the door to be left open.”

“Until I was 13 it was plain sailing, with studying, then it got harder and harder. I haven’t got any A levels yet. Part of the purpose of the group is to support each other. We are all on Whatsapp and if we need help we can contact each other.”

Eleanor, a mother of two, realised she had Asperger’s when her elder daughter was diagnosed with the condition. She read the book Aspergirls by Rudy Simone and it proved a revelation.

“I started reading the book and I could see myself in it, and my mum. My mum was diagnosed at 61. The book explained my whole life. It was like I was finding myself – like opening the door to Narnia,” she said.

“Everybody has different issues, but we have the feeling of being an alien and never fitting in, of always being on the edge,” she said.

“When you are an Aspie you are always in fight or flight mode. It makes you feel very anxious and I was always scared of everything, too scared to do anything.”

Eleanor believes the condition has made her very creative, however. She is hard at work making elaborate bird wings for her daughter, and explained the complex and inventive ways she is building them.

She also finds refuge in amateur dramatics – because in a play she is given a script and never has to worry what to say.

“I don’t have to worry about knowing how to behave and what to wear,” she said. “I was in The Odd Couple, with the Highworth Players and I learnt 690 lines.”

DASH was set up to improve the quality of life of adults in Swindon with Asperger’s and other high functioning autistic spectrum disorders. The charity aims to raise awareness of the condition, offer support and promote local services to people with Asperger’s to enjoy safer, happier lives.

The organisation is based at Sanford House, in Sanford Street and runs a number of regular groups, for men and women.

For more information, visit www.dashswindon.com.