Singer Susan Boyle’s recent revelation that she has Asperger’s syndrome highlights an important issue about the autism spectrum disorder in women, an Australian expert says.
Girls are slipping through the net because the condition is harder to pick up in females, according to Queensland psychologist Tony Attwood. An estimated one in 100 – or 230,000 people – have been diagnosed on the Autism spectrum in Australia, according to Autism Spectrum Australia (ASPECT).
The majority of children referred on for diagnostic assessment are boys.
The boy to girl ratio for referrals is about ten boys to each girl, yet the epidemiological research for Autistic Spectrum Disorders suggests the ratio should actually be four boys to every girl, Dr Attwood says.
He believes the disproportion in diagnostic referrals is because it’s a lot harder to identify the neurological disorder in girls.
“There is a good understanding of boys or men with Asperger’s but fewer clinicians know about how the neurological disorder presents in women,” Attwood says. As a result, many females suffer in silence for many years, just like Boyle did.
Boyle, 52, recently told British newspaper the Observer that she was teased throughout her life for her unusual behaviour and was called “Susie Simple” by children in her hometown of Blackburn, Scotland.
For Boyle, revealing her Asperger’s diagnosis, which she kept secret for the past year, came as a relief.
“I was told I had brain damage. I always knew it was an unfair label,” she said. “Now I have a clearer understanding of what’s wrong and I feel relieved and a bit more relaxed about myself.”
Attwood has written numerous books and resource papers on Asperger’s Syndrome, including Asperger’s, Autism and Girls: Understanding and Appreciating the Female Perspective.
He says Boyle’s diagnosis shines the spotlight on many issues.
One is that those with Asperger’s can be gifted with talents despite their social confusion and difficulties. The second issue, Attwood says, is that there are several generations of people with Asperger’s, particularly women, who have not been diagnosed until later in life.
Dr Attwood believes girls with Asperger’s are often misdiagnosed, which means they don’t get the help they need for some of the by-products of the condition: low self esteem, depression, vulnerability, predatory or abusive relationships, excessive weight loss or gain and selective mutism, among other things.
“In the past, unfortunately people tended to do what I call a moral diagnosis,” Dr Attwood says. “In terms of something bad about the person like ‘she’s just stupid’.”
Attwood says he can understand the sense of relief that Boyle spoke about. “Now she’s realised that there is a neurological explanation and that it is not about personality or upbringing.”
Girls are more at risk of being undiagnosed because they are better at coping with being different, Attwood says.
In other words, they fake it until they make it.
Girls are also quick at developing strategies to camouflage or mask social confusion. “What girls tend to do is that they know they’re not very good socially so they become observers of social situations, analysing it, working it out, the nuances all those sorts of things,” says Attwood. “They learn to camouflage their social confusion by imitating others … say creating a role or script.”
Attwood says clinicians need a paradigm shift in terms of understanding the female presentation of Asperger’s syndrome to ensure earlier diagnosis and access to support and understanding.
He has also wants more understanding, in general, towards those with Asperger’s.
“The biggest difficulty in a way for people with Asperger’s is not Asperger’s itself, it’s the attitude of other people, especially their peers,” he says.
What to do if you suspect your daughter may have Asperger’s:
Read up about it from credible sources, such as official website autismspectrum.org.au and peer-reviewed scientific literature, then see your local GP, who can help you get a diagnostic assessment from a recognised expert in Asperger’s.
Some signs of Asperger’s in girls:
- Extreme sensitivity to social gatherings. Girls may react by trying not to be noticed.
- A tendency to develop routines and rituals around food and a special interest in kilojoules and nutrition in adolescence.
- A tendency to escape into imagination. Girls may identify with a fictional character such as Harry Potter or Hermione Granger.
- A tendency to apologise and appease when they make a social error.