Doctors are 'failing to spot Asperger's in girls'

[Gareth Roberts]

Doctors are 'failing to spot Asperger's in girls'

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.

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."

From: http://www.guardian.co.uk/lifeandstyle/2...http://www.guardian.co.uk/lifeandstyle/2009/apr/12/autism-asper

[Autistic-Me_TVStar]

i certainly agree with that they failed to see me with it at age 4 years old my speech was delayed i was late diagnosed due to moving to a different area which they ended up diagnosing me going through ADD, DAmp, ASperger and autism was a yes. but the thing is im a girl who is 19 still being treated badly by the learning disabilitiy team and mistaken me for a attention seeking girl which im not but i do have complex case of being diagnosed with a borderline personality disorder is well as my autism which isnt common

[Katie]

This is all very interesting. A couple of years ago, I was investigating my condition and I was found too social to have Asperger's Syndrome. I am good at understanding non-verbal communication, but I struggle in spoken conversation. In the end I was diagnosed as having an "Auditory Processing Disorder" but I'm not sure whether this is the best discription of my condition.

In the summer I read a series of books about Asperger's, and initially found them really useful. I wasn't entirely comfortable with the idea that I might have it. I'm not sure whether I really have Asperger's but I think I have a lot of similarities with those who do.

I hope that this issue is addressed. I can identify a lot with what Attwood was saying about girls.

[toxic_lolly]

I fully agree with this, we have known since our daughter was about 2 years old that something was not quite right. Now at the age of 15 she is on a very long waiting list to be assessed ( for the second time) as 10 years ago she was rejected as having a problem on the autistic spectrum. In this time we have done battle with various schools over her extreme behaviour and the fact that she is a constant target for the bullies. I can't help but feel that a proper assessment and diagnosis years ago may have made her life a little more berable and she may have not hated school for most of her life so far!

[wootlebug]

This is very interesting.

Over the years I have run into a number of males that I would easily identify as having AS. Yet, thinking back I can't think of a single female I've ever met who would I would call an Aspie. The reasons may be:

1) I'm better at spotting male aspies (it takes one to know one, etc).
2) I wouldn't spot a female aspie if I tripped over one because what do I know about body language and social communication?
3) Females are much better at concealing symptoms
4) Females exhibit (externally) different symptoms
5) I've never met a female aspie. However, if the ratio given here is correct, even my sheltered existance would have thrown up at least one!

[spunkykitty]

female aspies are the invisible lost children, in my opinion. we have been sidelined and pressured to 'be normal' and indeed achieved a great measure of 'success' in this area of social conditioning such that we just fall right through the cracks... i was always an odd child but only diagnosed in my early 40s when i already knew myself i had asperger's anyway. i love being an aspie, i have perspectives that others don't seem to share but i still love me, though intimate relationships have thus far been almost impossible - it's not difficult to attract attention from men if a woman is physically attractive and intelligent and a good conversationalist (superficially - since an intelligent woman always has something interesting in her head anyway)... i have had no trouble superficially, but the real disasters kick in soon as the froth is scrapped away... :-) and as far as i know, there are NO books or really helpful articles specifically for males who are in love with or in a relationship with an aspie female, whereas books abound for the other way around (female with male aspie). grrrr

[lucy123]

After years of knowing something was different about my daughter and being told off for poor parenting by teachers throughout primary school, my daughter, now nearly 15 is finally being assessed for Aspergers. This is after she has consistently self harmed and more worringly took an overdose and as a result does not attend school on the advice of CAMHS as she is at risk of psychological and emotional harm. The part of the article that illustrated my daughter's difficulties was when it describes asking questions and seeing the "terror in their eyes". This is something I have seen in my daughter regularly. I just hope that this is taken on board and girls get assessed and their needs recognised a lot sooner - it is a tradgedy that these girls grow into women and suffer a life time of social isolation.

[kittykat123123]

This is an issue that really needs to be addressed. I haven't met anyone else with AS that I know of, though I have spotted a few others I think may also have AS and it is much easier to spot in guys. I think the most noticeable in girls would be the warped perceptions of emotions and conversation, for the longest time I thought smiling was bad because it made me look silly and crying was weak etc. Doctors are not good at picking up on this at all, just last week I went to mine and he said, "You don't look like you have Aspergers," and due to my GCSE results, "You're too intelligent." My doctor was rifling through a medical dictionary while we were talking, so he couldn't have been that informed. It's a huge pain trying to convince someone you know you have AS and they just say you're wrong. Isn't one of the main indicators of AS being able to identify with the symptoms?

[wootlebug]

Hi Kittykat,
I reckon you might have spotted a gap in the publishing market there. Perhaps you might start to write about your own experiences which could turn into a book!

As you can see from my own somewhat flippant remarks earlier up this thread, I can't think of any female I have ever met who might be an Aspie. Mind you, having my own "warped perceptions of emotions and conversation", I don't suppose I'd notice it in other people. If anything I'd probably think of you as more normal than most. Actually, when I was a teenager I never wanted to smile because I thought people would think I was stupid. Perhaps that is an aspie trait as well.

Interesting that you say it is easy enough as a woman to fall into a relationship but that's when things start to go wrong. Can you say what happens and whether it can be a general problem? Most male aspies have trouble getting into relationships in the first place and then they go downhill from there!

And as for the tired old "you're too intelligent to be an aspie", it make me want to spit. I can show office after office stocked to the walls with aspies prized for their intelligence, focus and attention to detail.

Sorry, I'm rambling on about me again.

[kittykat123123]

I think there are likely to be more Aspies available for me, as I am taking a psych course at university (which I originally started to find out more about Aspergers) and the university is very Aspie friendly. Ditto about the smiling, and I still get, "Smile, you look miserable" from family, and even strangers! I think it may be a trait.
I think that it's not too hard to get into a relationship if you find people that you share interests with, the difficulty is maintaining it (though I can't remember where I said it was easy, another thread?). If you think about it, the first time you meet people they think you're a bit quirky. You meet up with them again. Then after a few times with x amount of social slip ups, you're irritating, immature, oblivious etc. You don't know what to say, and it makes you look unsociable. You talk to much about something they don't get, your a show-off/too intelligent/ boring. You don't know when to call them, you wait, nobody calls, so you ignored them?
I can do worse - somebody said I was too expressive: He was late for the meeting, I was therefore going to be late for my lecture and had a meltdown in his office. I hadn't even gone in to talk about AS, he just brought it up so I wasn't prepared. Oh, and I was late for my lecture.
Rambling is the basis of most of my conversations. I don't mind.