Special report: Intersex women speak out to protect the next generation

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adults, androgen insensitivity syndrome (AIS), atypical genitalia, Children, chromosomes, disorder of sex development (DSD), gender, hypospadias, Identity, internal sex organs, intersex, operations, support, surgery, treatment, Young adults

Special report: Intersex women speak out to protect the next generation

It has taken Holly Greenberry, Sarah Graham, Dawn Vago and Elizabeth Jo Roberts years to go public with their stories. Born into a world that insists on dividing people into two sexes, they did not always know how they fitted in. They were born to typical families in typical areas of Britain, but none of them developed into typical male or females. They are intersex.

An estimated one in 2,000 babies is born with an intersex condition or a (controversially named) disorder of sex development (DSD), which means that they are born with a reproductive or sexual anatomy that does not fit the typical definitions of female or male. This can include atypical genitalia, chromosomes or internal sex organs.

The women argue that their very existence has been “eradicated” by British society. Generations of children have been operated upon to “normalise” their genitals or sexual anatomy, while official documentation, from birth certificates to passports, requires a male or female box to be ticked.  They argue it’s one of the last “human rights taboos” in the western world.

The women have a type of androgen insensitivity syndrome (AIS), which means they have XY chromosomes, but are partially or completely insensitive to testosterone – they are all infertile.

The group has come together to launch a campaign, calling for the Government to urgently review the way intersex people are treated. Following on from Germany’s decision to allow newborn babies to be registered as neither male nor female, their recommendations include the option to leave the sex on British birth certificates blank, measures to protect babies or young people from irreversible and non-consensual treatment and surgery, better emotional support and increased education.

“We are at a tipping point,” said Greenberry, co-founder of Intersex UK. “Most intelligent human beings would be completely surprised and utterly dismayed at the civil inequality and human rights abuses that healthy intersex children and young adults are facing.”

She added: “We need to sit around the table with the Government because we have lived through it. We are positive role models, and professional and intelligent women, who want to represent the needs of children so that the problems we experienced aren’t replicated.”

In the 1960s, it became the norm to operate on children with atypical sexual anatomy at a young age. Doctors assigned the child’s gender and operated to reinforce it. Although attitudes started to change around the turn of the millennium, and clinicians say they have moved to a more “multi-disciplinary” approach, there is still no record of the number of operations carried out, according to Professor Sarah Creighton, consultant gynaecologist at University College London Hospitals.

This year, the UN Special Rapporteur on Torture condemned non- consensual surgery on children to “fix their sex”, saying it could cause “permanent, irreversible infertility and severe mental suffering”.

XXXora, a 33-year-old intersex artist from London, who supports the women’s campaign, refused an operation. She was born with ambiguous sex organs and raised as a boy, but describes herself as “super-feminised from the beginning”. She said: “I never had surgery or hormones. We talked about it, but then I wouldn’t be me. I don’t want to morph into a blue or pink box; I want to stay in my silver box.”

But the campaign is not all about surgery. Certain intersex people, such as Greenberry, are struggling to correct the sex marked on their birth certificates, which makes it impossible to marry and more difficult to adopt children.

Lord Wilf Stevenson, opposition whip and former special adviser to Gordon Brown – who has a more common DSD called hypospadias – supports the campaign and has raised concerns with ministers. “The issue is that the current law has been overtaken by medical technology,” he said.

There is also a need to provide long-term emotional support for intersex people. Ellie Magritte (not her real name), the mother of a girl with AIS and a member of the support group DSD Families, said adults “need and deserve much greater investment in adult DSD care, focusing not on gender, genitals and genetics, but on health, wellbeing and happiness”. She said not all people with a DSD define themselves as intersex, but added: “The main challenges for families and kids is the social context in which we live with these conditions.”

Pia Clinton-Tarestad, head of specialised commissioning at NHS England, said that the NHS is “working to assess the services we commission for intersex people”, and that it understood that “issues surrounding the timing of, and consent to surgery, are controversial”. She added that best practice involves “co-operation and agreement” between child, parents and a multidisciplinary clinical team.

Holly Greenbury

When Holly Greenberry was born, almost four decades ago, doctors spotted a degree of sexual ambiguity. She has XY chromosomes, but also partial androgen insensitivity syndrome, leaving her partly insensitive to testosterone. She was assigned a male sex on her birth certificate, but she did not develop secondary male characteristics during puberty. She knew her gender was female and underwent treatment and surgery throughout her teens. Now, the businesswoman, from south-west England, is in the process of adopting a child. Because she is unable to change her name or sex on her birth certificate, adoption is harder and marriage impossible.

“I’ve never been completely male nor completely female in my genetics. I didn’t masculinise the way a male was expected to, and my body feminised in certain areas. I didn’t have the words to express myself; I didn’t know how I fitted in. It left me feeling really isolated and, while I tried to identify as male, I couldn’t do it. It was like having a series of repetitive panic attacks. Surgery was horrifically damaging and led to huge number of follow-up surgeries. It all could have been prevented if there had been more medical understanding and if there had been less haste in trying to guess which label best fitted. I should have been allowed to be an ambiguous teenager with the freedom to express my natural gender.”

Dawn Vago

Thirty-three years ago, when Dawn Vago was born, she looked like a typical baby girl. But when she was a young child, doctors told her parents that she had testes which would have to be removed. The married singer and programme director from Warrington, Cheshire, is genetically XY and has complete androgen insensitivity syndrome, which means she is totally insensitive to testosterone. She has been on oestrogen replacement therapy since she was 11.

“The doctors told my parents there was no one else in the UK with this condition. I felt alienated from all of my classmates. I always identified very much as female, but had issues accepting myself. When I first read my file and saw my diagnosis, my world completely exploded. I found a support group and all of a sudden, felt like I wasn’t alone. The moment of joy turned into anger. I was in my early twenties and had spent my whole life and childhood feeling alienated. I realised that it doesn’t have to be this way.

“The doctors told my parents that they should push me into a career and make me become a busy woman, so maybe I wouldn’t have time to settle down and have a family. They said I would find it very difficult to find a partner. Two and half years ago, when I walked down the aisle to my incredibly handsome husband, deep inside I was sticking a middle finger up to the entire medical establishment. I am very proud of who I am and I love my body, but I hate the journey that I’ve been on.”

Elizabeth Jo Roberts

Elizabeth Jo, a 29-year-old freelance journalist from Edinburgh, was brought up as a girl. At three years old, when doctors discovered undescended testes, they removed them without her parents’ consent. She was told at the age of 10 that she was infertile and, in her mid-teens, that she had androgen insensitivity syndrome, having been born with XY chromosomes. She met other people with intersex conditions for the first time only a few weeks ago.

“My parents told me I couldn’t have children at 10 years old. I took it pretty badly. It’s like when you’re winded and all the air is sucked out of you. It destroyed my adolescence. I got bullied quite a lot. When I was 10 or 11, I was first given oestrogen pills, but I used to forget to take them, so I never really developed significantly.

“I struggled with identity issues throughout my adolescence and even in my twenties. I’ve left it late on in life to meet others like myself. It has been one of the best things I’ve done; emotionally cathartic. I suffered quite heavily from depression. I want to help others to not feel the same way. They don’t have to feel bad about themselves. Social change takes years to happen, but we should be living in a society where people don’t feel bad about their identity because they have chromosomes that are variations on the norm. They should have freedom to express themselves.”

Sarah Graham

Sarah, 44, did not find out the truth about her diagnosis until her early twenties.  The counsellor from Surrey has complete androgen insensitivity syndrome. She presented at birth as a baby girl and was raised as one, but she has XY chromosomes and was born with internal testes, instead of ovaries. When doctors removed them, at the age of eight, they told her they were removing her ovaries to protect her from cancer and  imminent death.

“They should have told my parents the truth about my diagnosis. The lies were enormously damaging to me and affected my life. They put me on oestrogen replacement therapy when I was 12 years old but, if they had left my body intact, I would have produced hormones naturally. Every six months, I was prodded and poked by an army of medical students.

“Once I saw my diagnosis, I felt like a total freak, like I didn’t belong, and was offered no support. I felt like the only person in the world with the condition and that no one would love me. I went into a massive period of self-hatred and self-destruction, which fuelled a drug and alcohol addiction. Children need to be able grow up intersex if they want and parents shouldn’t be so pressured to make a decision. We must be given the space to exist.”

Not just a boy thing: how doctors are letting down girls with autism

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aggression, anxiety, Depression, Eating Disorders, emotions, gender, mental health issues, misdiagnosis, OCD, relationships, social exclusion, stress, tics, vulnerability

Not just a boy thing: how doctors are letting down girls with autism

Annette Lewns has more experience than most of the different ways in which boys and girls with autism are treated. Her 14-year-old son, Ryan, was diagnosed when he was three and a half. But doctors refused to diagnose her 12-year-old daughter, Rachel, until she was nine.

“What angers me is that for years I was dismissed by doctors purely because Rachel was a girl. Ryan was spotted very quickly because the autism symptoms that doctors look for are so male-orientated,” said Lewns. “But Rachel’s autism was hidden unless you knew where to look for it.

“Rachel could express herself, she had a couple of friends and understood emotions if someone was at an extreme: really upset or really happy. But you didn’t really have to look too hard to see she didn’t genuinely understand emotions or relationships: she was just mimicking scripts and scenarios from TV.”

“The doctors failed time and time again to see through her coping strategies. I fought for years but I was confronted with a wall of disbelief and scepticism. They were simply unable to understand that a girl might present differently to a boy.”

While Ryan’s condition was acknowledged by their local authority, and he is now at a specialist school, Rachel continues to struggle at a mainstream school. “Ryan is being taught all sorts of tools and techniques to cope with his condition but Rachel is not,” said Lewns.

Estimates of the ratio of females to males diagnosed with Asperger’s syndrome or high-functioning autism varies from 1:4 to 1:10. No one understands this gender disparity: whether women really are less likely to be on the spectrum than men – or whether doctors are failing to spot the disorder in women.

Opinions are divided: Richard Mills, director of research at the National Autistic Society (NAS) says he “would not be surprised” if the true ratio was twice as high, with one woman on the spectrum for every two men. Dr Judith Gould, director of the NAS’s Lorna Wing Centre, thinks the ratio could be even narrower, with 1:1.5 female:male.

We may soon have an answer. Mills is leading the UK arm of a two-year international programme, Autism in Pink, which will look at the condition in women, focusing on the stress, social exclusion, vulnerability and misdiagnosis they suffer.

It follows concerns about reluctance to diagnose women. One recent survey by NAS found girls may wait longer than boys for a diagnosis and are more likely to be misdiagnosed: just one-fifth of girls with Asperger’s syndrome who responded to the survey were diagnosed by the age of 11, compared with half of boys.

The UK is leading the research side of the programme. Last week, Mills signed up the first two of the 12 women with Asperger’s he needs to work with researchers over a two-year period.

“I hope the programme will be the first step to ending the current trend for gender to be a barrier to diagnosis and post-diagnostic support,” he said. “Because research in the past has largely concentrated on males, the way we understand autism tends to be very much based on the experiences of men and boys with the condition. People are reluctant, for some reason, to make a diagnosis in girls and women.”

This reluctance is exacerbated by the fact that girls and women with Asperger’s or high-functioning autism can be more adaptive than boys: they are commonly better at hiding things or seeming more sociable, masking what doctors traditionally think of as the signs of autism.

But the strain of trying to appear “normal” can be immensely stressful. Gould said it results in “many of the girls we see having developed secondary problems such as anxiety, eating disorders or depression”.

This can also mean that misdiagnosis of girls and women is also a problem. The survey found 42% of females had been wrongly told they suffered psychiatric, personality or eating disorders, compared with 30% of males.

There is also the problem that the gender difference becomes a self-fulfilling prophecy: because more males are diagnosed than females, it is their symptoms and behaviours that experts have studied. The so-called screening tools, developed to help diagnosticians spot the syndrome, focus on culturally “male” interests, such as computers, trains and cars, rather than things more likely to appeal to a girl, such as animals, soap operas or fashion. Gould is rewriting the NAS’s diagnostic interview for social and communication disorders to include “gender-neutral” cues.

Even when an accurate assessment is given, however, it is no guarantee that the necessary support and help will materialise: the NAS survey found women continue to struggle after diagnosis, with half of females with Asperger’s or high-functioning autism – compared with 39% of males – saying it made no difference to the support they received.

Lucy Clapham, 25, spent years being turned away by doctors who insisted “girls don’t get autism” and told her to simply “act normal and read female magazines”. “I am certain that my diagnosis was delayed because of the fact that I am a girl,” she said. “My mum first noticed something when I was about six but our GP laughed at the suggestion. I’ve gone to counsellors, doctors and psychiatrists but all of them, including my teachers, refused to see I had classic autism even though I had casebook symptoms: almost no speech until I was five, no friends, hours spent staring at the washing machine, lining toys up and flicking my fingers in front of my eyes.”

When she was 12, Clapham became violent, aggressive and developed multiple tics, obsessions and compulsions. “I stopped talking outside of the house and sunk into an inner world,” she said.

After two more years and about eight counsellors, Clapham’s GP referred her to a child psychiatrist. “She was adamant that girls didn’t get autism, they just had ‘traits’,” said Clapham. “She claimed that I just needed to ‘act normal’ and that by buying nice clothes and reading women’s magazines I could learn to be ‘normal’. The only diagnosis I received from her was depression and anxiety.”

After leaving the children’s mental health service “none the wiser and possibly with more mental health problems than when I had arrived”, Clapham was sent to the adult mental health service and, after a long battle, to the Maudsley hospital in London, where she was finally diagnosed with autism, Tourette syndrome and obsessive-compulsive disorder.

“I was still refused services, however, partly because there were none available and partly because our local authority was not willing to fund an out-of-town, specialist autism service,” said Clapham. “I ended up getting sent to a college for the blind where I developed more mental health problems and became very aggressive because no one understood me or my autistic behaviour.

“When I was 20, I ended up in care because my mother couldn’t cope with my aggression and anxiety.”

Clapham stayed there for three years but still struggles. “Despite my diagnoses, some people still seem to believe that autism is a ‘boy thing’,” she said.

There is no clear understanding about how many girls and women are being missed – or wrongly diagnosed – and for how long. But that may soon change: the first neuroimaging analysis of women and men, with and without ASD, has been under way for the past two and a half years at King’s College’s Institute of Psychiatry (IoP) and the Autism Research Centre at the University of Cambridge. It’s hoped this research could provide the clues. The final stage of the project is about to begin, with results expected in months.

“It’s very exciting,” said Dr Michael Craig, a senior lecturer and honorary consultant at the IoP’s department of forensic and neurodevelopmental sciences. “We could well be looking at gender-specific treatments for Asperger’s being developed in quite a short period of time.”

What is autism?

First identified in the 1940s, autism is a developmental disability that lasts a lifetime and affects someone’s interaction with other people – how they communicate with and relate to them. It is a spectrum condition, affecting some more seriously than others. While some lead fairly independent lives, others suffer serious learning disabilities and need extensive support. Many who have an autism spectrum disorder can be badly affected because they have trouble processing sounds, sights and smells.

Around half a million people in the UK have autism, according to the National Autistic Society (NAS). What causes it is still unclear. “There is strong evidence to suggest that autism can be caused by a variety of physical factors, all of which affect brain development. It is not due to emotional deprivation or the way a person has been brought up,” the NAS says. Genetic factors are assumed to be responsible, and scientists are trying to pin down which genes are involved. Genetic testing to enable earlier diagnosis is therefore still a long way off.

Many people are not diagnosed until they reach adulthood. A recent NAS study of more than 8,000 people with autism, parents and carers found 52% were initially misdiagnosed. One in three adults with the condition say they have developed serious mental health problems because they have not received enough support to help them cope with the difficulties autism brings.

It’s a girl: The three deadliest words in the world

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abortion, Children, culture, daughters, documentary, economy, education, family, femicide, film, foeticide, gender, girls, infanticide, mothers, parents, poverty, women

http://blogs.independent.co.uk/2012/01/16/it%E2%80%99s-a-girl-the-three-deadliest-words-in-the-world/

It’s a girl, a film being released this year, documents the practice of killing unwanted baby girls in South Asia. The trailer’s most chilling scene is one with an Indian woman who, unable to contain her laughter, confesses to having killed eight infant daughters.

The statistics are sickening. The UN reports approximately 200 million girls in the world today are ‘missing’. India and China are said to eliminate more female infants than the number of girls born in the US each year. Lianyungang in China has the worst infant gender ratio on record with 163 boys born for every 100 girls. Taiwan, South Korea and Pakistan are also countries in which unwanted female babies are aborted, killed or abandoned.

Gendercide in South Asia takes many forms: baby girls are killed or abandoned if not aborted as foetuses. Girls that are not killed often suffer malnutrition and medical neglect as sons are favoured when shelter, medicine and food are scarce. Trafficking, dowry deaths, honour killings and deaths resulting from domestic violence are all further evils perpetrated against women. This femicide has led the Geneva Centre for Democratic Control of Armed Forces to report in ‘Women in an Insecure World’ that a secret genocide is being carried out against women at a time when deaths resulting from armed conflicts have decreased.

The brutal irony of femicide is that it is an evil perpetrated against girls by women. The most insidious force is often the mother in law, the domestic matriarch, under whose authority the daughter in law lives. Policy efforts to halt infanticide have been directed at mothers, who are often victims themselves. The trailer shows tragic scenes of women having to decide between killing their daughters and their own well-being. In India women who fail to produce sons are beaten, raped or killed so that men can remarry in the hope of procuring a more productive wife.

It is an oft-made argument that parental discrimination between children would end if families across south Asia were rescued from poverty. But two factors particularly suggest that femicide is a cultural phenomenon and that development and economic policy are only a partial solution: Firstly, there is no evidence of concerted female infanticide among poverty-stricken societies in Africa or the Caribbean. Secondly, it is the affluent and urban middle classes, who are aware of prenatal screenings, who have access to clinics and who can afford abortions that commit foeticide. Activists fear 8 million female foetuses have been aborted in India in the last decade.

The Chinese cultural bias towards male children is one exacerbated by the birth control policy. India, however, poses a more complex problem where the primary cause is a cultural one.

Activists attribute a culture of valuing children by their economic potential to South Asia’s patriarchal social model in which men are the sole breadwinners. Sons both carry the family name and work from a young age. Daughters, on the other hand, impose the burden of a dowry before leaving the home upon marriage. Strict moral codes, onerous cultural expectations and demanding domestic responsibilities are all forces that further subjugate women.

Dr Saleem ur Rehman, director of health services for the Kashmiri Valley, has conceded that a healthy male to female infant ratio in Kashmir in 2001 led him and his team to become complacent. Since 2001, the ratio has dropped from 94.1 to 85.9 girls per 100 boys. The solution, however, lies beyond merely holding officials to account.

The cultural root of the problem partially explains why an effective solution has eluded authorities. Legal prohibitions have proved ineffective. In India, dowries were outlawed 1961 and in 1994 the Prenatal Determination Act outlawed gender selective abortions. Yet dowries remain a condition of marriage and action against unregistered or non-compliant clinics fail to intercept registered medical professionals performing illegal operations.

A crude supply and demand distinction can be drawn. Activists argue the demand for eliminating female fetuses is independent of the supply of illegal services. Only those that can afford to abort will do so. Others simply kill or abandon female infants after birth. This foeticide/infanticide equation will only skew towards the latter if the problem of illegal clinics and criminal doctors were solved.

In the New Statesmen, Laurie Penny explained that South Korea improved its infant gender ratio through a programme of education. But is increasing the awareness of contraception, abortion laws and women’s rights a panacea? No. Educational efforts insufficiently target the core cultural canker. Similarly, economic policed designed to encourage development are necessary but insufficient. Any improvement in living conditions is unlikely to offset the financial burden of raising a child and a dowry.

A solution therefore must be three-fold. Policy efforts combatting poverty must be supplemented by legal prohibitions. There must be an educational programme informing women of their rights. Finally and most importantly, there must be a social and religions campaign aimed at destroying ossified cultural attitudes.

The distinction between, on the one hand a programme of economics and education and on the other a cultural campaign is not qualitative but quantitative. The latter warrants a greater level of official engagement, allowing governments to actively discourage femicide rather than passively encouraging change.

A ‘secret genocide’ is a malaise in response to which government paternalism must surely be justified. In Kashmir, officials have enlisted the help of social and religious leaders. It is religious and social leaders that must reinforce legal prohibitions on dowries with campaigns attacking the social pressures of producing one. And they must supplement information of women’s rights by persuading mothers to educate their daughters and to allow their daughters to work. These cultural channels are best placed to begin to erode sexist cultural monoliths.