New book highlights needs of girls, women with Asperger's

From The Telegraph in the UK:

At boarding school, Sarah Hewitt felt like an outsider. "Girls can be vicious in the playground and exclude other girls. I didn't fit in," she says. "I was no good at sport; I had terrible co-ordination." It was only her passion for playing the clarinet and saxophone that made her days bearable. "I escaped into music," she says. But that marked her out as different, too.

Sarah never managed to adapt. She found it difficult to socialise. She didn't like to be touched and she appeared cold. Although academic, her results suffered from her attendance and behaviour record. She was asked to leave her Oxfordshire school for disruptive behaviour just before her A-levels, and although she was allowed to sit the exams, she just "scraped through". Luckily she had already been offered an unconditional place studying music at Goldsmiths, University of London, but she lasted just one term there.

Her parents thought Sarah was psychologically disturbed, and they even considered the possibility of schizophrenia. But, rather than seek medical help, they tried to cajole Sarah into improving her behaviour. It wasn't until her mother, looking for answers on the internet, came across the National Autism Society and called their helpline for advice, that Sarah saw a psychiatrist. Finally, at the age of 26, she received a diagnosis of Asperger's syndrome (AS), a type of autism. Eight years on she is living a happy, fulfilling life near Witney in Oxfordshire, with her husband Chris Liversedge, a 45-year-old property developer.

Sarah doesn't blame anyone for the late diagnosis. Asperger's syndrome, a lifelong, incurable disability, which affects how a person makes sense of the world, processes information and relates to other people, is known principally as a male condition. Girls are rarely diagnosed. The cause of Asperger's, a developmental brain disorder, is mostly unknown but in 10 per cent of cases it may be due to genetic or environmental factors such as, possibly, smoking in pregnancy.

There are no statistics for children with Asperger's, but overall, 588,000 people in the UK have some type of autism including Asperger's, one in five of whom are female.

The NHS suggests that most parents will notice if a child is on the autism spectrum at around the age of two, when development of communication, imagination and emotion may have slowed down or stopped. If the symptoms are mild, it may go undiagnosed for a lot longer.

Men are four times as likely to be affected as women by AS, according to the National Autistic Society (NAS). As comparatively few girls "officially" have Asperger's, some girls get misdiagnosed with other mental health issues.

Now, Rudy Simone, a female sufferer of AS, has written Aspergirls (pictured), a "handbook'' that sets out to challenge this way of thinking. The book explains how the condition presents differently in girls; how they can be diagnosed and helped, and how they can help themselves.

Rudy, 46, an author and jazz singer, lives with her partner Mike Whipple, 40, who works in the wine trade, in San Francisco. Like Sarah, her youth was spent struggling with her identity. "I always felt different from my family; they seemed unpredictable and frightening. I was known to be gifted intellectually but I was so profoundly affected by AS that as puberty kicked in, I went through bouts of mutism which could last hours or even a whole day." She oscillated from performing for attention to shutting down completely – a swing of moods which she says is typical for ''Aspergirls''.

Other symptoms included an aversion to certain types of fabric or clothing, of smells, even foods. And like most people with AS, she developed obsessions. "Some people read hundreds of fantasy books; I read The Chronicles of Narnia hundreds of times. I would become so focused on a record I would literally wear it out playing it over again. I was always being told I was strange and different. 'Why can't you be normal?', they would say. It would set off a cycle of guilt and confusion and depression at my inability to fit in."

Many of the symptoms both she and Sarah describe are similar to those exhibited by men: difficulty understanding gestures, facial expressions or tone of voice; difficulty understanding jokes, metaphor and sarcasm. The struggle to make and maintain friendships; the difficulty in understanding other people's thoughts, feelings or actions; and the obsession with hobbies and interests. Where girls differ is that they are often better at mimicking and copying their peers, so they stand out less than boys. Their obsessions are not based so often on numbers and engineering (as with boys), but instead focus on animals, actors or pop stars.

Carol Povey, director of the Centre for Autism for the NAS, agrees that girls are often better at "pretending to be normal" than men. "But they often become isolated. They struggle with the complex way that women build friendships – with subtlety and nuance. They are more comfortable with rules and strict codes."

Rudy admits she has found it difficult to make friends. "I don't actually have a single close girlfriend. I've tried my whole life, but now I accept that I know lots of women I like, but none that I am close to. We are trusting and sometimes emotionally naive. If we get hurt, we tend to burn bridges. My bluntness and honesty – what some would call tactlessness – can get me into trouble. I have learnt to keep some things to themselves."

Friendships have also been problematic for Sarah "I've often found other women self-obsessed and false. I can't get to grips with social groups and I seem to make people uncomfortable."

Motherhood is not easy, either. Rudy has an 18-year-old daughter, Lena. "It's been very difficult for her to have an Aspie-mum. I have embarrassed her at times," she admits.

But Rudy is keen to explode the myth that Asperger's is an unremitting disability.
"There are many good things to be said about Aspergirls. We are highly intuitive. We have an incredible ability to concentrate and a work ethic which makes us employable in the right jobs." It saddens her that Aspergirls are still left on the margins of society: "So much of our world is about appearance and confidence, as opposed to substance," she says. "We aren't fake. We're not like that."

Carl Povey agrees. "We expect people with AS to fit in with us," he says. "We never adapt to them. They have to live in our world."

Sarah's diagnosis has left her feeling "a lot less angry and more self-aware". She has learnt strategies for coping with social situations, and her husband has learnt to be patient when she needs to know every detail before she can make a decision. She found a job at BT through the NAS Prospects employment support service, and she has even found the confidence to sit on the local parish council.

"I don't blame myself as I used to," she says. "I accept that I will get things wrong, misjudge people and try too hard. I have two good female friends and I'm working to be comfortable with who I am."