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

[Guest guest]

http://u.tv/News/Doctors-are-failing-to-spot-Aspergers-in-girls/5c70a015-3eb4-46\

e7-ba45-a82f7053ba4b

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

Expert says many more girls have autism than was thought, and failure to

diagnose them can lead to misery

Sunday, 12 April 2009

Tags: National News

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 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. "

guardian.co.uk © Guardian News and Media 2009

[Guest guest]

>>Girls slip through the diagnostic net, said Attwood, because they are so good

at camouflaging or masking their symptoms. <snip> 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. "

I spent most days in my early years at school being very anxious, and doing my

best to hide it. I couldn't act like the other children around me and always

felt on edge, that either the teachers or students would mention it, and they

often did.

*Everyone* knew there was something different about me. What they didn't know

was why. The teachers used to talk in my hearing about why I was so " strange " .

Some thought I was " emotionally disturbed " . Others thought I was retarded. My

mother told me when I was 12 and had to go to the hospital for my appendix that

the nurse who took care of me when I first arrived thought I was retarded based

on the way I answered her questions.

Being very literal, the way a lot of things were phrased when I was asked

questions or spoken to confused the heck out of me. I would either answer in a

way that showed I was clueless about what I was asked, or I refused to answer

altogether. This was also true for instructions. I would either do something

that was not what was instructed, or I would refuse to do it. As time went on I

took the tack of not answering at all or following instructions, fearul of

making a mistake and having people laugh at me or think me stupid. This had the

effect of apparently coming across as snotty or disobedient. *sigh*

And asking questions to clarify? I would get, " Gail, you know what I mean! Stop

playing stupid " . I didn't even understand the phrase " playing stupid " back then.

So asking clarifying questions got me into trouble, also. I kept making one faux

pas after another.

>>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.

I am able to hide my most intense interests. Partly because they are private to

me and also because I don't want to be ridiculed for them. Some of the interests

I had growing up, animals and books, were acceptable so never had to hide those.

I have interests today that no one in my life knows about. Not because they are

all that unusual, but that they are mine, and mine alone.

>> " 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. "

I didn't have any friends in school. I did have a boy I was friends with one

summer. He would come over every day and we would go walking and hiking. I don't

recall what happened to him and I don't remember seeing him in school.

~gail~

[Guest guest]

" As time went on I took the tack of not answering at all or following

instructions, fearful of

making a mistake and having people laugh at me or think me stupid. This

had the

effect of apparently coming across as snotty or disobedient. *sigh* "

I did everything I was told in school, but as an adult, I keep to myself

and avoid social situations, not for fear of messing them up but because

they are so stressful for me. Ialso do not respond to silly jabs and

jokes that are unintelligent and ignorant, as I do not see the benefit

in encouraging such behavior.

Administrator

[Guest guest]

hi Gail Marie;

some of what you wrote could have been written by me, regarding my school years: anxiety, always feeling on edge becasue of my fellow students, being thought to be strange, misunderstanding instructions, asking questions and being criticized for seeking clarification (that still happens to me), being told 'you know that' (I reply, no I don't, if I did I would not ask'), keeping quiet about my interests (now partly becuse i don't have a great need to share them with others)Unlike the stereotypical girls refered to in the article, I did hyperfocus on a couple of interests, BUT also esxcaped into both fiction and non-fiction, and imaginary worlds,We both survived!renaissanzelady

Subject: Re: Doctors are 'failing to spot Asperger's in girls'To: FAMSecretSociety Received: Monday, April 20, 2009, 6:42 AM

>>Girls slip through the diagnostic net, said Attwood, because they are so good at camouflaging or masking their symptoms. <snip> 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."I spent most days in my early years at school being very anxious, and doing my best to hide it. I couldn't act like the other children around me and always felt on edge, that either the teachers or students would mention it, and they often did.*Everyone* knew there was something different about me. What they didn't know was why. The teachers used to talk in my hearing about why I was so "strange". Some thought I was "emotionally disturbed". Others thought I was retarded. My mother told me when I was 12 and had to go to the hospital for my appendix

that the nurse who took care of me when I first arrived thought I was retarded based on the way I answered her questions. Being very literal, the way a lot of things were phrased when I was asked questions or spoken to confused the heck out of me. I would either answer in a way that showed I was clueless about what I was asked, or I refused to answer altogether. This was also true for instructions. I would either do something that was not what was instructed, or I would refuse to do it. As time went on I took the tack of not answering at all or following instructions, fearul of making a mistake and having people laugh at me or think me stupid. This had the effect of apparently coming across as snotty or disobedient. *sigh*And asking questions to clarify? I would get, "Gail, you know what I mean! Stop playing stupid". I didn't even understand the phrase "playing stupid" back then. So asking clarifying questions got me into trouble, also.

I kept making one faux pas after another.>>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.I am able to hide my most intense interests. Partly because they are private to me and also because I don't want to be ridiculed for them. Some of the interests I had growing up, animals and books, were acceptable so never had to hide those. I have interests today that no one in my life knows about. Not because they are all that unusual, but that they are mine, and mine alone.>>"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. "I didn't have any friends in school. I did have a boy I was friends with one summer. He would come over every day and we would go walking and hiking. I don't recall what happened to him and I don't remember seeing him in school.~gail~

Looking for the perfect gift? Give the gift of Flickr!