Autism and Asperger syndrome underdiagnosed in women, researchers say
David Rose, Health Correspondent and Rachel Carlyle
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Autism and related conditions are being underdiagnosed in women and teenage girls, with many cases being confused with eating disorders or other problems, researchers say.
With symptoms such as social isolation, communication difficulties or a fanatical interest in categorising objects or obscure mathematical problems, autism has previously been seen as a male preserve.
Up to 80 per cent of diagnosed cases of autism are in boys, with the proportion rising to an estimated 15 male cases for every female with Asperger syndrome, a milder form of the condition. However, researchers due to speak at Britain’s first academic conference on the issue will suggest that many more girls are on the autistic spectrum than previously thought, with doctors and parents failing to notice or misinterpreting the telltale signs.
Cases at the less severe end of the spectrum, where sufferers do not have speech problems and can have high IQs but have difficulties interpreting the world and its complex social rules, are thought to be particularly underdiagnosed.
“Girls are less likely to have language delay than boys with autism, so all the right boxes get ticked when they are toddlers and their autism can get missed,” said Richard Mills, research director of Research Autism, the charity that is organising the conference this month. “Autistic girls are also more likely to be outwardly social when they are younger whereas boys are less so.”
Boys commonly have autistic spectrum conditions diagnosed aged 5 to 7, whereas girls are usually adolescent or older, if they receive a correct diagnosis at all.
Dr Mills’s own research, due for publication this year, suggests that even when girls are screened for autism it is not picked up. In a study of 60 patients at an English psychiatric hospital, none had an autistic condition diagnosed after routine screening, despite 11 later being shown to have been confirmed cases.
“What was happening was that other diagnoses were being made — personality disorder or perhaps schizophrenia,” Dr Mills said. “This is possibly because most tests were developed around male characteristics of autism.”
Last year a survey of 7,500 British adults suggested that about 600,000 people in Britain suffer from an autistic spectrum condition but that rates are far higher among men (1.8 per cent of the population) than women (0.2 per cent).
It is unclear how many cases in girls are not being diagnosed but charities and patients’ groups say that a growing number of adult women are contacting them, having recognised themselves in autistic characters on television or through articles about autism, and are relieved finally to discover why they are “different”. Dr Mills believes that because it is assumed that autism is rare in girls, doctors are less likely to consider it. “I have spoken to parents of girls who have said that the first response from the doctor has been, ‘She is a girl, it is highly unlikely to be autism’. Not just GPs but paediatricians too.”
A further barrier to diagnosis is that girls are often better at masking the symptoms, such as difficulties with language, because they tend to be more advanced than boys, less disruptive and able to compensate better for their problems. Girls are also much less likely to have an obsessive lifelong interest in collecting facts, as boys with autism commonly do.
Janet Treasure, an expert on eating disorders at the Institute of Psychiatry, King’s College London, said that women or girls on the autistic spectrum often focused on diet or calorie control, which became their obsession. About one in five women with an eating disorder is thought to be on the autistic spectrum.
A study led by Professor Treasure on 150 women with acute anorexia or bulimia suggests that up to 60 per cent also develop the psychological signs of autism. “Those who are severely underweight and unwell, with serious disruption of eating patterns, share a lot of the cognitive and emotional styles common to autism,” she said. “Their poor nutrition means that they can’t see the bigger picture, they focus on detail and have a rigid way of thinking, finding it hard to adapt.”
These psychological symptoms were lessened when most of the women gained weight. But “girls with autism are at high risk of getting into a pattern of behaviour that can cause a vicious cycle of problems”, said Professor Treasure. “It is important that people notice and try to stop it.”
Campaigners are worried that the lack of diagnosis can have catastrophic effects. Low self-esteem can cause self-harming and even suicide, and social naivety can lead to bullying and sexual exploitation.
Mark Lever, the chief executive of the National Autistic Society, said: “We are extremely concerned that many women with autism may be going undiagnosed. So many tell us that trying to get a diagnosis feels like an insurmountable hurdle and they have to fight tremendous battles to get the help, support and services they desperately need.
“Autism is a serious, lifelong and disabling condition and without the right support it can have a profound effect on individuals and families.”
Autism and Asperger syndrome
— Autistic spectrum disorders (ASDs) are developmental conditions that can vary from child to child, and from mild to severe. Their symptoms are grouped into three broad categories:
— Problems with social interaction, such as a lack of understanding and awareness of other people’s feelings.
— Impaired communication skills, such as delayed language development and an inability to start or take part in conversations.
— Unusual patterns of thought and physical behaviour, including repetitive physical movements. The child can become upset if the routines are broken.
— There is currently no cure for ASD, but there are a range of treatments that can improve the symptoms.
— There are three main types of ASD: autistic disorder (also known as “classic autism”); Asperger syndrome (milder symptoms that affect social interaction); and pervasive developmental disorder (children who have some symptoms of either).
— ASDs are uncommon but not rare. In England it is estimated that 1 in every 100 children has an ASD.
— In the past, many children with an ASD may have been labelled as “slow” or “shy”.
— Kim Peek, the most famous autistic savant and inspiration for the film Rain Man, died aged 58 in December. He could read eight books a day, taking just ten seconds to read a page.作者: 忠于我心 时间: 10-2-20 19:00
related comments:
Stef Heathcote wrote:
Would anyone know where is the line between shy and mild ASD? What is the measuremnet of how many time a little girl can choose to sit on her own and this can be ok and at which point I start worrying and seek help? We are all different - learing social skills is not always easy, but sometimes is hard and sometimes is completely allient, I just don't know how to recognize the difference...Can anyone help, please?....
February 18, 2010 11:58 AM GMT on community.timesonline.co.uk Recommend? Report Abuse Permalink
ally drysdale wrote:
hello, like Miranda I have at last received a diagnosis of AS- at age 48 ! It is a relief to know there are reasons why I am like I am. I have also had the label of bad parent,eccentric etc. I am susceptible to anxiety, depression. I have many difficulties but for years have managed to hide them, although relationships with men didn`t go so well, which was a good indication of AS ?
I have been criticised for commenting on the new DSM V discussion, as the american psychiatrists are looking at dispensing with AS as a diagnosis. personally I find AS is helpful as a diagnosis but other people think it limits the support individuals will get from the local authority. There will still be individual assessments and the `high functioning` people will probably still be left out in the cold. I was lucky to be assessed and it was only possible because I am on a degree course and my way of learning is certainly different, so the disability advisor referred me for assessment.
Yes, there are many women out there that are undiagnosed and struggling but what are we going to do about it ?
February 15, 2010 6:34 PM GMT on community.timesonline.co.uk Recommend? (1) Report Abuse Permalink
Miranda March wrote:
I agree with all the other comments other people have written. I have only just been diagnosed with high functioning autism at the age of 47 years. I have struggled all of my life to this date and no-one took my mother's concerns seriously when she tried to gain help after raising concerns about my development. I agree that girls are clever in masking their differences and have very often learned to cover up their difficulties because by their very nature they are more sociable than boys. However, I have never been sociable and have always been acutely shy. I have also struggled to gain a diagnosis for my own son. This took 15 years and it almost destroyed me owing to the fact that I wasn't believed which made me so angry. My son's headmaster stated I was responsible for my son's problems because he said I was eccentric. I am furious that women are seen in this way whether they have a diagnosis or not. To all the parents who feel that something is amiss with their daugher or son's development please follow your instincts and do not give up hope because you will be taken seriously if you follow your innermost voice.
February 11, 2010 1:51 PM GMT on community.timesonline.co.uk Recommend? (2) Report Abuse Permalink
Jacqui Footman wrote:
Pam Mason, as an adult at least you have the support of the new Autism Act, which commands that services for adults must be provided.
I am going through hell atm trying to get an assessment for my 13yr old daughter - so many eg school doctor and paediatricians don't recognise her as obviously ASD and our local specialist service recently closed to new referrals with a waiting list of 11.5 months. She is suffering so badly at school having returned after 18mths illness (glandular fever/MECFS). Signs of ASD are clear now she has to reintegrate socially but were masked at primary school. People tend to think I am just an over fussing mother and she will get over it once she gets used to school again. She is having a terrible time but can't express it to anyone else, help!
February 9, 2010 8:11 PM GMT on community.timesonline.co.uk Recommend? (5) Report Abuse Permalink
Rhys Jaggar wrote:
I'm still of the strong belief that, at the milder end of the spectrum, this is not a 'disease' or a 'condition' but a 'different wiring'.
I'd lay strong odds that the 'traditional path' from 0 - 18 might be totally wrong for some autistics and that 18 - 0 might be closer to the mark. By that I mean with good education you go from obsession with routine toward free thought, with 'normal' children going from innocent spontaineity toward systematising and organising.
Would that be a problem if mentored properly??
February 8, 2010 4:30 PM GMT on community.timesonline.co.uk Recommend? (2) Report Abuse Permalink
Carrie Brown wrote:
I am beginning to wonder if I have mild Asperger's. For a while, I wondered if my dad has high-functioning autism, but I started noticing some of the symptoms in myself. As a child, I was labeled "shy" and was diagnosed with social anxiety in my teens. I was also diagnosed with adult ADD. I struggled a lot with social awkwardness.
February 8, 2010 5:35 AM GMT on community.timesonline.co.uk Recommend? (4) Report Abuse Permalink
Rory Davis wrote:
Alyson Bradley, so, professionals fail to make diagnosis and this is a problem.
But everyone is unique individuals.
Do you want to be categorised on not?
February 7, 2010 1:17 PM GMT on community.timesonline.co.uk Recommend? (1) Report Abuse Permalink
Pam Mason wrote:
It seems to me that there are two distinct and very separate problems here. First we have the needs of parents whose young children are newly diagnosed. Great that they are getting help. But those of us who are adults, who have struggled through life with an intolerable invisible burden, are entirely different. I was 47 when I was diagnosed. I want children helped because I don't want them to go through what we went through. But I want us adults to be helped too.
All too often this debate is framed as though AS was a childhood illness. It isn't. Well done for parents for being so vocal. But it's time we AS adults were given an equal hearing.
February 7, 2010 11:39 AM GMT on community.timesonline.co.uk Recommend? (14) Report Abuse Permalink
Erin Monk wrote:
I'm currently raising a wonderful little boy with autism. Although I do not have it, I can see a lot of the traits in myself, especially as a child (obsessiveness over certain narrow topics, extreme shyness, extreme sensory issues, learning difficulties, anxiety disorders, eating issues, auditory processing disorder, etc). I do not have the trademark difficulties with socialization that a person with autism has, therefore I am pretty sure that I am close to the spectrum but definitely not on it. I do wonder if the same "causes" of autism in males also present in females with a similar frequency, just with a different expression.
February 7, 2010 1:18 AM GMT on community.timesonline.co.uk Recommend? (2) Report Abuse Permalink
Selina Postgate wrote:
Lucy Brown, reading through my reply to your post I realise I may have come across as rude and uncaring (as we autistics frequently do, having limited social understanding). I was not condemning you for trying psychotherapy for your daughter. She is lucky to have a family who have worked so hard to meet her needs.
With regard to a formal diagnosis, this would entitle your daughter to a variety of disability supports while at university, such as mentoring, library assistance and recording equipment, which might make her time there easier and more pleasant. Legally speaking at least, a disability should not affect her employability, and again it could entitle her to free support under the "Access to Work" scheme, which might make her working life more successful and less stressful. In the long term an Asperger's diagnosis might be very helpful and protect her from inadvertent abuse if she ever develops psychiatric problems or decides she does need social care support.
February 6, 2010 11:49 PM GMT on community.timesonline.co.uk Recommend? (2)作者: 忠于我心 时间: 10-2-20 19:00 本帖最后由 忠于我心 于 10-2-20 19:28 编辑
Deb Gardner wrote:
Probably more women do go around with it. But generally I think more men have it than are actually diagnosed. They are generally more tunnel visioned about matters, they go train spotting, plane spotting. Yes I think a lot of men are autistic.
February 6, 2010 5:34 PM GMT on community.timesonline.co.uk Recommend? (3) Report Abuse Permalink
Selina Postgate wrote:
Lucy Brown, as your daughter is reaching or has reached adulthood, the choice of whether to pursue diagnosis must of course now be hers.
I would like to point out though (from bitter experience, having spent countless hours in therapy and counselling trying to "cure" myself of what turned out to be autistic traits) that the neurological differences that make some of us autistic (and I include Asperger's) are hardwired.
Psychotherapy is useless, even counter-productive, unless the therapist both accepts that the client has an ASD and understands the consequences of this for the client's psychological make-up. Unfortunately there are not many therapists yet who do have the necessary knowledge and experience, particularly when it comes to working with autistic women.
February 6, 2010 2:54 PM GMT on community.timesonline.co.uk Recommend? (10) Report Abuse Permalink
Lucy Brown wrote:
I have a daughter, who had various diagnosis: some traits of Asperger's, no traits of Asperge's, anxiety; NHS psychotherapy, private psychotherapy... but nothing helped. I have an impression that nobody knew how to deal with her problems: low self esteem, shyness, social interaction, obsession about people. She is very intelligent, with very high IQ, hard working, at one of the best universities. She does not cause problems for others, but generally unhappy. As an young adult now refused any help from NHS, because "she is coping well". Is it worth pushing for diagnosis of Asperger's syndrom,for a highly functioning girl? It can only reduce her prospect of employment and does not guarantee any real help from social services. A caring family is the best support.
February 6, 2010 1:43 PM GMT on community.timesonline.co.uk Recommend? (11) Report Abuse Permalink
Frank Taylor wrote:
Our daughter who is three has been diagnosed with aspergers we didn't find any problems where support from our doctors was concerned and we were given a referral date to have our daughter tested very quickly.
As she is so young she is going to be retested every year, this is to assess her progress as she is still only a baby really.
We don't ignore men when they suffer from breast cancer, so why are people ignoring girls who have autism?
February 6, 2010 1:01 PM GMT on community.timesonline.co.uk Recommend? (7) Report Abuse Permalink
Adele Williams wrote:
John Bald wrote:
>>I am currently working with two children, a boy and a girl, who have both been "diagnosed" as having Asberger's, and who are both perfectly capable of normal behaviour, work and concentration when treated with normal consideration and politeness. Asberger's is too easy a diagnosis for a lazy psychologist who is not prepared to get to the underlying causes of children's behaviur. In one case, the problem was sensitivity to light that led to the person being unable to learn to read, and the behaviour was caused by frustration at this. Perfectly understandable, and now fixed.
>>
First, it's Asperger not Asberger.
Second, the diagnosis should lead to exactly what you suggest: an understanding of the issues underlying difficulties that people may experience with schoolwork, employment, relationships etc. Sensory issues like the one you describe are common in AS--even though they are not part of the current diagnostic criteria--as all experienced clinicians know. Adjusting the environment and changing our own communication, teaching, and work styles is the key to success, because there is no "treatment" for AS.
It's good to see some solid research, following on from Gillerg's study on AS and eating disorders. Most of the adult women ith AS I have met have been through horrific experiences due to misdiagnosis with schizoaffective disorder, personality disorder, or schizophrenia. The drugs currently given to people with these conditions cause health problems for those who should not be taking them, including inability to think, massive weight gain, movement disorders, etc., while not helping the condition at all. Appropriate education and social care, on the other hand, helps people make good lives for themselves!
February 6, 2010 12:42 PM GMT on community.timesonline.co.uk Recommend? (8) Report Abuse Permalink
Andy Davis wrote:
My local health and education authorities are quite good. Indeed my daughter has had a Statement of Special Educational Needs since she was 4 because of her language development etc (it's quite unusual to have one so early).
But it's only now, when she is nearly 12 that she is going through the testing regime for an ASD. We, her parents have recognised it for years but overcoming the inertia of "Girls don't suffer from ASD" has been an uphill struggle from start to finish - and as I say this is with reasonably good authorities.
What it must be like for children and adults in less than good authorities must be a living nightmare. So on behalf of them I am very glad that the whole issue is being revisited.
February 6, 2010 12:33 PM GMT on community.timesonline.co.uk Recommend? (7) Report Abuse Permalink
Alyson Bradley wrote:
The process of self discovery is exhausting and does not help when those around us start to question us, I needed a diagnosis because I knew their is no way my husband and others would of accepted that I was without that, because until we are sure... it can seem like being lost in a void with no where to turn and easier to try and go back before its official which is scary at first, but for me now their is no compromising as now I know for sure, I can not go back and allow my life to only exist in parts, exist for others, no more pretense.
Their are many badly informed professionals out their and they make us question self, which can be a huge stress, here in NZ many doctors do not always diagnosed adults and feel the same in world wide in parts.... its like they want to see where we have issues and change that, so wrong as when we are so desperately trying to look for answers, it does not help having doors slammed in our faces, and making us question what we know.
Their is no specrum none spectrum really we are all unique individuals, but for some of us that bit more different, but the more we get to know self the easier it is not only for us, but those we care about... I do feel grils re accepted if they're quiet and non-active, are we better at disguising our differences.? Asperges Parallel Planet
February 6, 2010 6:10 AM GMT on community.timesonline.co.uk Recommend? (6) Report Abuse Permalink
John Bald wrote:
The problem is not under-diagnosis, but accurate diagnosis. I am currently working with two children, a boy and a girl, who have both been "diagnosed" as having Asberger's, and who are both perfectly capable of normal behaviour, work and concentration when treated with normal consideration and politeness. Asberger's is too easy a diagnosis for a lazy psychologist who is not prepared to get to the underlying causes of children's behaviur. In one case, the problem was sensitivity to light that led to the person being unable to learn to read, and the behaviour was caused by frustration at this. Perfectly understandable, and now fixed.
February 6, 2010 5:23 AM GMT on community.timesonline.co.uk Recommend? (8) Report Abuse Permalink
ROBERT BOYD wrote:
Your right all women have it!
February 6, 2010 12:54 AM GMT on community.timesonline.co.uk Recommend? (2) Report Abuse Permalink
Selina Postgate wrote:
It took me five years and a complaint to the Healthcare Commission just to get an NHS referral for an assessment for Asperger Syndrome. When I was finally seen privately, after a further two-year wait in vain for an NHS-funded assessment, the well-known and highly-respected clinical psychologist who assessed me told me my Asperger's diagnosis was "quite unequivocal".
This is not a trivial matter - I suffered a nervous breakdown and developed serious physical health problems whilst waiting, as until I was positively diagnosed with AS I was unable to obtain any of the social care support I needed to cope with daily living.
I know of numerous other women who have likewise been refused referral to experts for assessment for ASD, either by GPs or local mental health teams. Over the years these women's resulting mental health issues - often including hospitalisation - cost the NHS far more than timely diagnosis and appropriate social support would cost.
February 6, 2010 12:46 AM GMT on community.timesonline.co.uk Recommend? (14)作者: 忠于我心 时间: 10-2-20 19:38 标题: 案例研究：女孩自闭症症状被忽视5年之久 本帖最后由 忠于我心 于 10-2-20 20:08 编辑
案例研究：女孩自闭症症状被忽视5年之久
Julia McGeady, 14岁，有一个自闭症的哥哥，但是尽管有这样的家庭问题，她的情况在好多年里还是没有得到诊断。
Case study: Autistic symptoms of girl were ignored for five
years http://www.timesonline.co.uk/tol/news/uk/health/article7017180.ece
Julia McGeady, 14, has an autistic older brother, but even with this family link, her condition was not diagnosed for a number of years.
“We were concerned because she was not speaking at 3, and she wasn’t coping at nursery, where she’d have major tantrums,” says her mother Teresa Abrat, a former IT consultant from West London. “The awareness of autism wasn’t as good as it is now, especially for girls. Even though my son had been through the nursery, and diagnosed with autism, it did not occur to them that she might have the same thing.
“Her older brother would not play with toys at all. But she would try — she’d pick up soft toys and try to make a story with them. On a good day, she would try to be sociable and would give eye contact and be smiley, whereas he rarely smiled.
“As time went on, more obvious symptoms began to emerge, but they were not always the same as her brother’s.
“Unlike her two brothers, who are both fascinated by trains, she does not have one obsessive interest.” Julia’s condition was diagnosed at the age of 5, and at 6 she moved to a school for children with autism, where there are only six girls out of sixty children, and none in her year group. “I really do think it’s harder to be a girl with autism, because when they hear the word autism, people think of men,” says Ms Abrat.
“Julia is now into fashion, make-up, teen magazines and pop bands — she’s really trying to be like other girls of her age, but it’s obvious to them that she’s not like them at all.”
