Greener2, there was an article about girls with missed dx Aspergers in Saturday or Sunday Times magazine recently. Another thread had someone cut and paste it as per below:
MUMMY, I'M NOT A NAUGHY GIRL - Louise Carpenter, Sunday Times, April 7 2012
Picture an autistic child and you think of a withdrawn boy. But new research suggests huge numbers of girls with autistic spectrum disorders are not getting the diagnosis they needLook at that picture there,? says Surrinder Sandham-Bains, passing an album of photographs charting the life of her eldest daughter, Nina, now 17. ?She was white-blonde as a baby and so pretty. I remember looking at her, thinking, ?You have the world at your feet.? ? But by Nina?s third birthday, the problems had begun. She was not smiling or making eye contact, and what little speech she had developed was disappearing. She refused to acknowledge her new sister, Misha. ?It was utterly heartbreaking to watch,? remembers Surrinder. Nina?s tantrums were also becoming unmanageable. Initially, Surrinder and her husband Ian thought it was sibling jealousy, exacerbated by the terrible twos, but they were advised to investigate Nina?s diminishing speech. The first speech therapy appointment was in May. By November, one month before her third birthday, Nina was diagnosed as autistic. ?It was devastating, utterly devastating. We just thought it was a language delay. I don?t think I heard one word of what followed ?autistic?. My first thought was, ?Will she get married??, and the images I had in my head were that she would be institutionalised. She looked so beautiful and perfect, and life is hard enough as it is. I went through a bereavement. The little girl I thought I had was not the little girl I really had. I suppose you have a blueprint in your mind of the life your child is going to lead ? and that blueprint was gone. Even now, I bump into mothers who had their daughters at the same time and they tell me what they are planning for their lives, and it?s a reminder that once I thought Nina was going to do those things, too. I grieve, but less so now.?Added to the isolation of those first few years following the diagnosis was the confusion of family and friends. ?Our parents couldn?t grasp what it meant. ?OK, so when?s she going to get better?? they would ask us,? Surrinder recalls. There was also another misconception: ?Isn?t it boys who have autism?? was a common response, too. ?I found that particularly unhelpful,? remembers Surrinder, ?We?d look around special schools for her [they eventually chose to keep her in the mainstream system but with a special educational needs statement entitling her to one-on-one support] and they would be full of boys; not one girl. We?d go to support groups and, again, no parents of girls.?There are more than half a million people in the UK with autistic spectrum disorders (ASD) ? around 1 in 125. The stereotype of an autistic child (more than 90,000 between 4-16 in the UK, some 18,000 of whom are girls) is always a boy, and not without reason. In 1943, a child psychiatrist in the US, Leo Kanner, conducted a study of a small group of children with autism. There were only three girls and four times as many boys. As a result of Kanner?s paper ? Autistic Disturbances of Affective Contact ? his male ?model? of an autistic child became the go-to study for diagnosis: poor eye contact; lack of speech; lack of interaction; no imaginative play; obsessive ?boyish? interests; a fascination with puzzles; challenging, inappropriate behaviour; the need for order and structure; an abhorrence of change or ?surprise?. It wasn?t until 1981 that Asperger?s syndrome, a less debilitating form of autism, was recognised as a disorder in Britain. It was first identified by Hans Asperger in Vienna in 1944; almost 40 years later, it was the subject of an academic paper in the UK by Lorna Wing, a researcher who is the mother of an autistic daughter. Wanting to widen the criteria and challenge the Kanner model, she came up with the phrase ?the triad of impairments? to describe the chief areas of disability defining the Asperger?s spectrum: problems with social interaction and relationships; problems with communication; problems with imagination. National Autistic Society figures place the ratio of girls/boys with autism at around 1:4. Asperger?s is at somewhere between 1:4 and 1:6 (a large Swedish study of Asperger?s in mainstream schools in 1993 produced a female/male ratio of 1:4). Wing?s more recent work, together with Dr Judith Gould, has been to set up the National Autistic Society?s Lorna Wing Centre for Autism, which since the early Nineties has helped the parents of children who are finding it difficult to get a diagnosis. In that time, Wing (now retired but still a consultant at the centre) and Gould (its director) have produced overwhelming evidence that girls with Asperger?s and non-Kanner types of autism are not being diagnosed. Last year, Gould, together with Dr Jacqui Ashton-Smith, published a seminal paper, Missed Diagnosis or Misdiagnosis? Girls and Women in the Autism Spectrum, which, if widely implemented by psychiatrists, psychologists and paediatricians, may go some way to producing the evidence that the female to male ratio could be as high as 1:2, as some studies and anecdotal evidence suggest.?It has been a revelation,? says Gould. ?These girls are not ?presenting? in the same way as the boys. Typically they end up with us in adolescence with high levels of anxiety and depression, eating disorders and self-harming, because they have found it so hard to try to be ?normal? all their lives. The bright ones tell me that they learnt all their social skills by using their intellect ? imagine how hard that is.?This has also been picked up by Professor Simon Baron-Cohen at CLASS (Cambridge Lifespan Asperger?s Syndrome Service), a clinic he has been running for the past ten years for adults with suspected Asperger?s. ?Often our researchers can tell in an instant with men,? he explains. ?With women, there is no outward sign of disability. Their social skills are good, there is eye contact, they understand how a conversation works. But it is only when the person tells you what is going on underneath the surface, what a struggle they have found life, that you realise a diagnosis is appropriate.?The differences between the sexes ? in so far as non-Kanner autism is concerned ? are as follows. ASD girls have greater social skills because they can ?copy? behaviour in a way boys can?t. They can ?play? but are generally passive. While they are not unmanageable, they don?t understand hierarchy and can be rude. School is often where problems start to show; whereas before ?imitating? might have been enough, in the rough and tumble of playground life, girls can find it difficult to cope. They can have an imaginative life in the way boys can?t.?A pre-school girl on the spectrum might be quiet and shy, immature and passive, and led by other girls, copying them in their behaviour, but not good at managing her friendships,? explains Gould. So how do you know if your shy little girl has ASD or not? Is she masking traits of autism or is it just her personality? ?Parental instinct is usually very strong,? says Carol Povey, director of the National Autistic Society?s Centre for Autism. ?They often say, ?I can?t put my finger on it,? or, ?She doesn?t play quite like the other children.? ? There are three messages of equal importance here. First, that even using the Kanner model of autism, one in five affected children is a girl ? a high total given our assumptions of autism?s gender bias. Second, that if this research and its predictions are on target, there are many girls out there as yet undiagnosed. Clare Sainsbury, daughter of the former Labour minister for science and innovation, Lord Sainsbury, is an exemplary case of the damage caused by ASD being missed in childhood. She was finally diagnosed with Asperger?s in her twenties after years of being branded ?weirdo?, ?nerd? and ?freak?. Her adolescence was shaped by depression and low self-esteem. As part of the Sainsbury Family Charitable Trusts, she has set up the Three Guineas Trust, which, among other projects linked to autism and Asperger?s syndrome, funds Baron-Cohen?s CLASS clinic in Cambridge. Of her childhood, she writes in her book Martian in the Playground, ?It?s as if everybody is playing some complicated game and I am the only one who hasn?t been told the rules... I think that I might be an alien who has been put on this planet by mistake; I hope this is so, because this means that there might be other people out there in the universe like me.?The third message is that, if there are many more girls out there beyond the 18,000 or so already diagnosed, we have an obligation to ensure that parents and teachers teach their children kindness, compassion and an understanding of difference. Dr Tony Attwood, a leading ASD authority, has put it this way: ?Typical children are natural child psychologists and long before the child has a confirmed diagnosis, peers know that there is something different about that child.? One mother of an eight-year-old autistic girl, diagnosed four years ago, told me, ?I see kind little girls make friends with her and she?s so obsessive in her friendships she literally wants to crawl under their skin. Eventually, she always loses them all because they can?t handle her intensity. I understand it ? children are children ? but it breaks my heart to watch her go through it time and time again.?Even with Nina Sandham-Bains?s early diagnosis (she fits the Kanner criteria), and the love and care of her parents and siblings, her childhood has been dogged not only by the confusion of her peers, but by vindictive and subtle bullying. A recent study of the prevalence and frequency of bullying in a sample of more than 400 children with Asperger?s syndrome reported that bullying was four times higher than for their peers, and that 90 per cent of the mothers who completed the survey said their child had been the target of some form of bullying that year. Misha, Nina?s sister, now 14 and unaffected by ASD, was scarred, too, both through being targeted directly (at primary school) and, later, by proxy, having to watch her sister?s self-esteem unpicked by deliberate cruelty. When I first meet Nina, she is so distressed by an unexpected break in her routine it is almost unbearable. We had gone to great lengths to ensure that she was not upset or threatened by my visit to her house in Bath. There was a lot of advance warning, and I?d sent over a photograph and answered the questions that Surrinder had relayed in return (Nina wants to know how old you are, Surrinder wrote). While I was more than happy to answer, I was struck by how, over the years, in having an autistic daughter, Surrinder must have had to abandon the social niceties for a direct approach.I?m sitting chatting with Surrinder and Misha, Nina?s sister, in their tidy sitting room. Misha is telling me how she and Nina have different tastes in music: ?She hates Rihanna and listens to all Mum and Dad?s Sixties, Seventies and Eighties stuff.? ?It?s because she isn?t influenced by her peers,? Surrinder explains.Surrinder is looking at her watch, mildly anxious. Nina is about 15 minutes late home from her special-needs sixth-form college. Suddenly we hear a terrible howling at the door. ?Oh God,? says Misha. ?Shall I go and sort her out??Misha runs to the door. ?What?s wrong, Nina? What?s wrong?? she cries. The screaming gets louder and more distressing. It sounds as though somebody is horribly injured or there?s a terrible crime being committed. ?I HATE TRAFFIC. IT MAKES ME MAD! IT MAKES ME MAD! THE BUS WAS LATE! I HATE TRAFFIC!??Come on, let me take your bag,? Misha says. The shouting ebbs away into sobs.?Do you want a drink?? Misha continues. ?IT?S BECAUSE OF RADSTOCK! IT?S A BAD PLACE! I WANT TO DIE!? ?It?s because the bus was late,? Surrinder says. ?She hates it when anything surprises her.? Seeing my worried expression, she adds, ?I guess we get used to it as her family ? we?re desensitised to her extreme behaviour.? (The mother of the eight-year-old who can?t keep her friends echoed this sentiment. She said to me, ?It?s only when I see other people?s horrified expressions that I want to burst into tears at what we?re dealing with. When we?re on our own, we just get on with it.? She?d shown me a picture of her beautiful, angelic daughter, and then revealed that the child had recently punched her in the face. I?d said I was amazed at how she coped. Her retort was, ?I can?t bear sympathy. That doesn?t help me.?)About 20 minutes later, Nina appears at the door, a striking girl with long brown hair parted in the middle, huge greeny-blue eyes and brightly painted red lips. ?I am better now,? she says, before disappearing. ?That?s her way of telling you it?s passing,? explains Surrinder.For the next ten minutes or so, Nina talks to herself. ?Yes, it can seem a bit odd,? Surrinder says. Then Nina reappears. The afternoon gradually takes on a calmer note. Nina holds my hand, takes me to her room and lets me wander around looking at her books. We talk about music ? the Beatles, Tina Turner, Kurt Cobain ? and how her favourite colour is yellow (yellow iPod, yellow tracksuit bottoms, yellow watch). Once, up in her room, I inadvertently push the boundaries and pick up a lipstick to see the colour. ?Put that down,? is the response. At another point, downstairs, we are chatting and I?m watching her draw (fabulous sci-fi girls). I pick up a sheet of paper to admire her work and she shouts, ?LEAVE IT ALONE!? Later, just when our conversation is rolling along nicely, she says suddenly, ?Can you go away now please?? Yet I love everything about her, her warmth, her directness, her rapport with her mother. They dance together to the iPod, swaying back and forth to their favourite music. ?When I think what will happen to her when I die,? Surrinder tells me while, from the kitchen, we watch her working away at her drawings, ?I always tell myself, ?She?ll be fine. She?s so vocal in what makes her happy or unhappy, nobody will be in any doubt.? ? The hope is that Nina might, in the next few years, be able to manage some kind of independent but supported life ? although Surrinder admits that she continues to think of her as vulnerable, which, of course, she is. ?But Mum,? says Misha, ?you?ll never have to worry about Nina. She?ll always have me and Amrik [their older brother, away at university].?Living and coping with an autistic child is not just a challenge for parents. It is on my second visit to see the family that I get a clearer picture of the degree to which Nina has shaped Misha?s life. Nina has had to endure bullying since she was small. More than once Surrinder would speak in her daughter?s primary school assembly about difference ? but still it continued. ?Because I was little, I didn?t understand it back then,? explains Misha. ?She would run around the playground laughing at things nobody understood. I didn?t understand it either, and then the bullies started on me. ?Ha-ha,? they?d say. ?You must be like her, too.? ?The bullying got really unbearable, however, a couple of years ago once Nina hit 15. She was at a single-sex state comprehensive, and girls in Misha?s year ? operating with a pack mentality ? would gang up on Nina and persecute her in subtle ways. ?They?d ask her when her birthday was and she?d tell them,? says Misha. ?And then they?d repeat the wrong date. They knew exactly what to do.?As the intimidation intensified, Nina?s confidence dropped through the floor. Despite all the love at home, she started saying she hated herself. She grew a long fringe so nobody could see her face. ?She?d come home and say, ?Mummy, they?re saying I?m a freak. Am I?? And I?d say to her, ?No, you are not,? ? remembers Surrinder. ?We always felt, though, that if we were going to pull her out of that school, it had to be for something other than bullying. They tried to deal with it but there were never any proper, independent witnesses ? and never any exclusions. That?s what was needed. Somebody needed to be made an example of.??I couldn?t bear it,? Misha tells me. ?In the end, I had a bit of counselling to try to help me deal with it. I remember seeing it, that first time, and I told a teacher. Those girls, and they were in my year group, all came over to me and said they liked her. I nodded but I knew they were lying. In the end, it was easier for me if I couldn?t see it going on, but it was still unbearable, knowing it was happening.?Even at Girl Guides, children would laugh at Nina. ?And she did behave inappropriately,? says Surrinder. ?But I thought to myself, ?Should I stop allowing Nina to enjoy Guides because people are laughing at her?? And the answer was no.?For Misha, even though she is only 14, it is as though she?s the older sister. She feels responsible for Nina. It?s important she looks out for her. The prospect of university is exciting but, she adds, ?I think I?ll miss Nina so much.? Surrinder says, ?I keep telling her Nina isn?t her responsibility.?Misha admits, too, that she has to be strong because Nina is the vulnerable one, the one who has been targeted. Is bullying particularly bad for girls with ASD? Misha thinks so: ?You know girls. They can be spiteful in ways that boys aren?t.? Nina is now away from her schoolgirl bullies, and yet she is no more at home with her autistic male peers. ?Those children have problems,? Nina tells me. ?Real problems.? ?There is no perfect solution,? Surrinder concludes. ?It doesn?t exist.?Growing up is often a painful process even for children without a disability. There is a school of thought around ASD, often adopted by people without training or knowledge who are justifiably frightened and in denial, of the ?negative? effects of labelling a child. Perhaps this is a temptation for the parents of a little girl who is displaying some symptoms such as ?passivity?, traits that society might forgive. And so the girl muddles along, albeit passively, with very few friends and only superficial social skills. But Judith Gould could not be clearer. ?It is vital for these girls that there is recognition that how they feel is something that is important, and that it?s not to do with them being different. Once you know that, once you get a diagnosis, you can help them deal with it and live with it. You can give them the right support, the right counselling. Women diagnosed as adults experience such relief.?Clare Sainsbury is equally adamant about this point in her book. ?When I didn?t have an official diagnostic label, my teachers unofficially labelled me ?weirdo?,? she writes. ?Frankly, I prefer the official label. It?s the stigma attached to being different that is the problem, not the label.?Any parent will be able to empathise with the heartbreak of a child who is having problems fitting in. I heard about 11-year-old Emma Monks at the beginning of my research for this piece. For years, her mother, Angela, had worried about her and latterly had been locked in a battle with her. In infancy, nobody played with Emma at nursery. She was left standing alone in the school playground, and never had any friends. She hated getting ready for school and would have tantrums and crying fits. Time after time, Angela and Emma went to see doctors. ? ?She?ll grow out of it,? they said, and, ?Some children just like to be naughty, and she?s one of them.? ? At her wits? end, Angela went on parenting courses, convinced she was failing her child. It made no difference. By the age of 9, Emma had been assessed by a child psychiatrist who concluded, after a few sessions, that ?nothing was wrong?.?Emma became very depressed and wanted to hurt herself,? Angela remembers. ?She was labelled as rude and naughty.? She had no empathy; she laughed at children who fell over, took things literally and exploded with rage at home. ?I took her to the doctor?s and said, ?I do not want to hate my child because of the way she is. I need help.? ? It was a moment of breathtaking honesty and it got Emma a referral back into the child and adolescent mental health service (before the age of 5, children are seen by paediatricians). There, Angela finally encountered an enlightened doctor. She diagnosed Emma immediately as having Asperger?s, meeting five out of the six criteria. Nine years is a long time to miss a collection of symptoms, but it proves Simon Baron-Cohen and Gould?s point. Was Emma missed because she is a girl? The first thing Emma said to her mother after the diagnosis was, ?Does this mean I?m not naughty??The idea of Emma ? and her family ? suffering for so long, battling against the world and each other, is painful to contemplate. Emma wanted to meet me at home in Bristol to talk about what had happened. That we never did tells its own story about how difficult ASD children find things the rest of us take for granted. The first two meetings were cancelled. Just as it looked as though it was going to happen (I was on a train, an hour away), I got a message from Angela: ?Today she doesn?t want to talk to anyone. She?s dug her heels in. I don?t want to stress her. I am so sorry.?But once again, I was impressed by how brave and generous ASD children can be when supported and in their comfort zone. Emma e-mailed me instead. ?It was nine years before anyone listened to me and my mum. I?d started to believe that I was naughty because people just didn?t understand me. I feel better knowing that I have Asperger?s because I know I?m not a naughty child and my mum can tell people now when I?m being rude. If I want to give one message, it?s that people have to look more into these problems and not think that a child is rude and naughty when they can?t understand. Be more understanding to us. School can be very hard for me as I don?t understand and they don?t understand me.?Early diagnosis is something 32-year-old Lowri Murray pursued on behalf of her four- year-old daughter, Eleri, one of triplets. As the wife of a housemaster at Harrow School, Lowri was not considered ?at risk? of being unable to cope. She says now she felt unsupported, and her fears not taken seriously: ?I felt that nobody knew what they were looking for.?Even when Eleri was only eight weeks old, Lowri says that she could tell she was not like her identical sisters. She wouldn?t smile like the other girls and, as she developed, her speech was slow and she often distanced herself from her siblings. Lowri veered from thinking everything was fine to niggling concern. Eleri would never play imaginatively and could never play with more than one sister at a time; often, she would leave the room to be on her own. She preferred puzzles and shape sorters. Her eye contact was poor. She was a quiet child and totally independent. She hated loud noises and she always had to sit in the same place at the table. It was only because Lowri had worked with autistic children that she pursued her doubts with both her health visitor and GP. ?And I was told again and again, ?She?s one of triplets. She was premature. She?ll catch up.? ?Eleri?s speech was slow, but it was coming. With dedicated focus, Lowri and her husband taught her how to smile. To try to improve eye contact, they would hold her head and say, ?Look into my eyes.? They wondered if they were worrying for nothing. But within a fortnight of starting pre-school, however, concerns were raised about Eleri?s speech, and an assessment was suggested. ?I was so relieved I cried,? Lowri remembers. ?It was as if a huge weight had been taken off my shoulders.? However, shock and devastation came last year, with the diagnosis of high-functioning ASD, which had followed on from Eleri?s speech therapy. ?Even though I?d known it was coming, it was as if that last little bit of hope had gone,? recalls Lowri.She says that, even now, people who do not know her family well cannot believe that Eleri is autistic. ?She looks much like any other four-year-old to them. And as she gets older, she is learning to copy her sisters. A lot of her play mimics theirs. It?s only when you get the full picture ? the hatred of loud noises, the rough play, her need for routine, the way she won?t go clothes shopping or wash her hands in a public toilet ? that you can begin to see.I do feel that if we hadn?t had her diagnosed, she would have been labelled naughty and disruptive instead. She deserves to be given the same chances as the other two ? she?s capable of it. She just needs a bit more support to get there.? Lowri tells the other sisters, ?Eleri?s brain doesn?t work in quite the same way as yours. We all have to help her.?
Contact the National Autistic Society helpline on 0808 8004104 (autism.org.uk)