It is a condition on the autistic spectrum that has long been known to affect boys, who may have obsessive interests or struggle to make friends. Now an expert says many more girls have it than was thought, and failure to diagnose them can lead to misery and self-harm. Amelia Hill reports
Doctors are failing to diagnose thousands of girls who have Asperger’s syndrome, according to one of the world’s leading experts. Dr Judith Gould has accused the medical world of missing and overlooking girls with the condition, condemning them to lives of such misery that many resort to extreme self-harm and anorexia.
Gould and her colleague, Lorna Wing, carried out ground-breaking research into the link between Asperger’s syndrome, autism and other pervasive developmental disorders in 1979. Exploiting that insight, they pioneered the concept of the autism spectrum. Now Gould, a chartered consultant clinical psychologist with more than 35 years’ experience in autism spectrum disorders, has called on the government for a packet of measures to help girls with Asperger’s.
Gould, who is director of the National Autistic Society’s Lorna Wing centre for autism and co-founder of the Centre for Social and Communication Disorders, said: “We’re failing girls at the moment. We are doing many thousands of them a great disservice. They are either not being picked up in the first place, but if they ask for help they are being turned away. Even if they are referred for diagnosis, they are commonly rejected.”
The government is about to launch a consultation on a new national strategy on autism. Gould and the National Autistic Society want the final strategy – due at the end of the year – explicitly to address the misconceptions about gender that can make accessing help, support and services particularly difficult for girls and women.
“Women tell us that these misconceptions can make their particular battles and struggles even more difficult,” said Jane Asher, the society’s president. “They say that getting a diagnosis in the first place can often feel like an insurmountable hurdle, with many doctors unaware that the condition can affect females.”
More children are being diagnosed with Asperger’s today than ever before. A decade ago one in 1,000 children in the UK was thought to have an autism spectrum disorder (ASD). Five years ago that had increased to one in 500. Today the figure stands at one in 100.
It remains unclear as to whether the increase in diagnoses is caused by a true increase in the disorder, or is the result of increased awareness of autism and its broad characteristics.
Even less well understood, said Gould, is the difference in prevalence rates between boys and girls. The statistic most commonly reported is that ASDs are four times more common in males than in females. Many clinicians, however, believe that the ratio is as high as 16 boys to every girl. But Gould believes that significantly more girls have the condition than is recognised; she estimates the ratio to be 2.5 boys to every girl.
“Girls are not being picked up because there is still a stereotyped view of what Asperger’s is, which is based entirely on how boys present with the condition,” she said. “Professionals are not up to speed in knowing how girls present. We are working with the government to ensure they highlight this concern in their upcoming consultation. We are hoping to convince them to target this much under-investigated but vitally important issue.”
Tony Attwood, founder of the first diagnostic and treatment clinic for children and adults with Asperger’s, and author of The Complete Guide to Asperger’s Syndrome, agreed with Gould’s estimation of a 2.5:1 ratio of boys to girls. “The bottom line is that we understand far too little about girls with ASDs because we diagnose autism based on a male conceptualisation of the condition. We need a complete paradigm shift,” he said.
“We need to draw up a female version of Asperger’s that identifies girls on the basis of the way they present, and we need to do this as a matter of urgency: undiagnosed Asperger’s can create devastatingly low self-esteem in girls. In my experience, up to 20% of female anorexics have undiagnosed Asperger’s.”
Girls slip through the diagnostic net, said Attwood, because they are so good at camouflaging or masking their symptoms. “Boys tend to externalise their problems, while girls learn that, if they’re good, their differences will not be noticed,” he said. “Boys go into attack mode when frustrated, while girls suffer in silence and become passive-aggressive. Girls learn to appease and apologise. They learn to observe people from a distance and imitate them. It is only if you look closely and ask the right questions, you see the terror in their eyes and see that their reactions are a learnt script.”
Girls also escape diagnosis, said Attwood, because they are more social than boys with the condition. Their symptoms can also be missed because it is the intensity of their interests that is unusual, and not the oddity of what they do.
“The impairments to their social life or interests tend not to stand out in the same way as boys’ do,” he said. “They might have one friend, while boys with the condition won’t have any. Also, boys hyperfocus on facts and certain interests, such as trains or weather. Girls escape into fiction. They have imaginary friends, live in another world with fairies and witches, obsessively watch soap operas or become intensely interested in celebrities.”
Professor David Skuse, head of the behavioural and brain sciences unit at the Institute of Child Health, teaches clinicians to diagnose the condition. “Increasingly fewer girls are diagnosed as their IQ reaches 100, the population average,” he said. “Some people maintain this is because girls simply don’t have Asperger’s, but I would argue that brighter girls, especially those who are more verbal, are able to mask and compensate for their condition. I make sure I emphasise the difference in the ways boys and girls present when I train clinicians, because I am certain that girls are being failed by the system, especially those with higher IQs,” he added. “My belief is that, if we can prove the ratio of boys to girls is as high as many of us suspect, it would be as significant a milestone in this field as the discovery that the condition is on a spectrum.”
Original source from the Gaurdian.com 2009
Related articles
- Tony Attwood – The Pattern of Abilities and Development for Girls with Asperger’s Syndrdome (seventhvoice.wordpress.com)
- Women with Asperger’s Syndrome (seventhvoice.wordpress.com)
- Self esteem and Aspergers (seventhvoice.wordpress.com)
Seventh Voice 
This furthers my suspicions that I might have Asperger’s, as I have been pegged as anti social [among other things] for my preference to live in my mind, and in my stories, rather than deal with the general public. I get anxious in crowds, and have severe anxiety and hostile feelings at my retail job if there are too many people in the store, I often find myself “tweaking out” in specific aisles, obsessing over how things look and if it doesn’t look pretty enough, working until I make it so, often to the chagrin of my manager who would rather have me do other things more important. She’s cool, though, and doesn’t really chastise, as I think she knows there might be something there [her brothers have Autism, one with Asperger’s], and I can often FEEL her wondering about me lol!
Thank you for sharing Lilith…. there are so many women out there like you who are also wondering whether or not they may have Asperger’s Syndrome……. I hope each and every one of those who wonder will one day find their own answers, in what ever form they may come.
I am certain my adult daughter has Asperger’s Syndrome. She is 28 and was diagnosed as ADHD at age 7. She taught herself how to read and do math at age 2.5 while her older brother was learning to the same skills at age 6. She was already obsessed with computer games because she saw her brother playing them. Her repetitive viewing of certain videos used to drive me nuts until I realized that in fact while she didn’t talk clearly until older, she was very, very smart. Her pediatrician (a female) was the one who told me she was speaking in a self developed language, but that she was actually carrying on conversations. Unfortunately she would get frustrated when others could not understand her.
She has nearly an almost eidetic memory to things she hears and can repeat movies, or music at will. Her problems though are that she is unable to socialize or converse with people including relatives. She limits her responses to only a few words. As a result, even though she is very bright she is unable to get a job because interviews cause such intense anxiety that she cannot get through the interview without shutting down altogether.
Making new friends is really a challenge as well. It was not until Special Olympics became an option to people with cognitive disabilities and she was able to start participating, that she was finally able to feel comfortable at least around the athletes. She still does not talk to most of the coaches.
My issues I need help with is getting her SSI eligible for financial and medical care so she can become more independent. She was turned down for SSI once already. She lives at home watching anime and old TV shows or videos and rarely socializes even with people she knows. I need to get her evaluated and into a job program but do not know who or where to turn to. If anyone has resource materials it would be greatly appreciated.
Thank you so much Laura for sharing your story. It sounds as if you are in America….. I’m in Australia so don’t know anywhere near enough about your system…… So can any of my dear American friends help Laura out with some information??????
Laura, that sounds like my oldest daughter! She’s 19. She’s sweet as pie, but didn’t make friends in school. Ever. No sleepovers, no friends over. She does talk, however, but only to family that she feels comfortable with. She graduated 1st in her class and can repeat movies and music and movie info like an encyclopedia. She’s probably seen every anime series created. She still plays Pokemon games with an intense passion. I fear for her future and working and living on her own. sigh
Try Vocational Rehabilitation or TEEACH. They have programs to help DD/Autistic Spectrum disorders
My two girls fall into the category of the ones missed because of a high I Q. Girls definitely do present differently to boys. I have two prime examples. My girls also present very differently to each other. Thank god it is finally being addressed. We have suffered so much and been damaged because no one would see it.
Iv had several melt downs in the past. My mum was only petson who knew the real me and died in March. Iv had another melt down recently to finally work out why i was different to everyone else. Always know this but people watched to a fine art to understand communication. I remember far back as lining up my littke ponies to perfection to building blocks all the same colour. To connecting things together and needing to know how things work. Melt downs because i was different to fear of my strict catholic upbringing. Being punished for cutting off a girls ponytail simply because i didnt understand her facial expressions. Banging my head until it bled. Pulling my hair out to ensure i was real. My mum dealt with me but never got me help. Even after 2 suiside attempts as an early teen. Again another attempt in 2012 to get told im severly depressed because i dont really show emotion or love. Went through phsycology to be told i have no room for improvement in life. Finally finding midfullness that helps with feelings based on scensory feelings and traits of masking who i really am. Yes i attempted death again last month dics say im stuck with luck. So im trying to open up after aspergers self diagnosis a few years back. Unsure if i want to be stamped as a lable but then people might understand me. My shrink things i have a personality disorder which is unfair everyone is different and unique which makes us who we are. He doesnt like i have crippling social anxiety and somewhat an accentric personality. I need to be me and stop masking so i am who everyone wants me to be. I fell for that trap no more. I like being on my own so no one can judge me. I knew i was very different my whole 28 years here but coukdnt explain it. Fearing people thought i was mentally ill like my father. Now there is so much support it is wonderfull. I only self diagnosed when i started working with people who have autism. Im on this journey of the unknown…. do i open up or not. There is that little peice missing. Where do i go or turn to? The NHS are just too quick to diagnose me with a PD that i have created. I dont like people but peoole watched all my life to figure out why i was the way i am.
I don’t think it’s just girls are better at masking it, but it’s also largely due to stereotypes and differences in the way they are perceived, as I’m more akin to the female presentation of aspergers than the male, but I was still diagnosed at 8. Also with the IQ thing, I think one reason why less girls with higher intelligence are diagnosed is because less of them are evaluated, mental impairment is something that draws people to think autism, and thus people start looking for the traits.