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Glossary

Obtaining/Facing Diagnosis

This page considers the practicalities of obtaining a diagnosis and, in the case of AIS, obtaining carrier testing for XX female relatives, and then provides some pointers to material that may help in dealing with the emotional impact of an AIS-like diagnosis.

Index to this Page

Obtaining a Diagnosis

Introduction

Diagnosis of AIS is usually made at one of these life stages:

The first test to be carried out in a suspected case will probably be one which examines whether XY sex chromosomes are present. These are often detected either via a chromatin test using a buccal (mouth) smear (a rough indication that looks for a particular colour change in cells under a microscope) or via a blood test (a karyotype test that examines the shape of the actual chromosomes). At a UK support group meeting in 2002, AIS genetic expert Prof. Ieuan Hughes mentioned a new smear test called Fluoro In Situ Hybridisation (FISH) in which the X chromosome shows up as green and the Y as red.

Patients and their parents are often traumatized enough by the existence of XY chromosomes that they settle for a diagnosis of 'AIS' and do not pursue tests to differentiate different similar conditions. Nevertheless, it is quite useful to investigate further, particularly in the case of suspected Partial AIS (PAIS), which has a presentation similar to several other conditions (see Related Conditions). The following tests may be done.

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Blood Tests

Blood samples are used to determine the karyotype (the chromosomes present including whether the the sex chromosomes are XX or XY) and the levels of various hormones, as follows:

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Urine Tests

Urinary steroids may be measured. Not always very useful but may help in diagnosing cases of 5-alpha-reductase.

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Imaging

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Examination under Anaesthetic

This may be done if imaging cannot give the whole answer, or to plan for surgery. It may occasionally include a laparoscopy (examination of abdominal contents via telescopic device through small incision).

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Genital Skin Biopsy

Used to be done just for research but now may be done to look for DNA (although this can also be done using blood).

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Gonadal Biopsy

An examination of the testes being removed; in cases of AIS these tissues are supposed to look normal and be functioning (although they do not produce mature sperm cells). In other cases the gonads may present as streaks, as under-developed, or even as ovo-testes. This test is rarely done now unless looking to confirm true hermaphrodite, i.e. the presence of an ovo-testis.

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Gonadal Histology

If the gonads are removed they will be sent for histological analysis (to look at the structure at cellular level). This may sometimes help in the diagnosis e.g. in Leydig cell hypoplasia.

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DNA Studies

Usually done on blood. In some conditions, e.g. Complete AIS, the faulty gene can be identified in about two thirds of people with the condition. This means that if identified, other members of the family could be screened to see if they carry it (if they wished to be screened). Very few centres can offer this. The AIS gene is done in Cambridge UK, 17-keto-steroid in Dallas USA and France. Most centres are however happy to send off blood for this test if there is a good chance the result will be useful. They are very expensive and time-consuming 'needle in a haystack' tests. The clinical suspicion has to be very high to make it worthwhile.

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Anti-Mullerian Hormone (AMH)

Also known a Mullerian Inhibitory Factor or MIF. Test not available in the UK but widely used in the United States. It is a good marker for the presence of a testis.

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Familial Analysis

While about a third to a half of cases of AIS occur due to spontaneous mutations, the other cases follow a specific line of inheritance, namely through maternal lines. In cases where a relative with similar condition is known on a non-maternal line, or when there is consanguinity between parents, one may suspect that the girl does not have AIS but another condition with an autosomal inheritance (i.e. inheritance that does not involve either of the sex chromosomes but one of the 46 other chromosomes).

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Prenatal Diagnosis

AIS has been diagnosed as early as 9-12 weeks of intrauterine life by chorionic villus sampling (sampling of tissue from the foetal side of the placenta). By the 16th week it can be detected by ultrasound and amniocentesis (sampling and analysis of amniotic fluid). However, pre-natal diagnosis is seldom indicated unless there is a family history of the condition.

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Tissue-Level Defect

The exact nature of the defect at the tissue level in androgen insensitivity has been the subject of considerable research. Prof. Ieuan Hughes who leads the main UK research group (at Addenbrooke's Hospital, Cambridge, UK) that has done work on the androgen receptor gene told us (mid-1990s) that they had information on some 200 families with the condition. The research group has published a number of papers on various genetic/biochemical aspects of both the complete and incomplete (partial) forms of the condition. A recent paper from these researchers studies the molecular basis of the phenotypic (body appearance) variation in AIS. They put forward evidence that most, if not all, cases of complete AIS can be explained by androgen receptor defects but that the majority of partial or incomplete AIS subjects exhibit no defect in androgen-receptor binding, suggesting that other genetic defects are involved. It is also possible to have the same genetic defect and different genital appearances. CAIS and PAIS may thus be caused by different defects at the genetic/cellular level and are thought not to occur in the same family.

See Overview for information on the AIS grading scale.

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Carrier Detection

See Overview for details of the way in which AIS is inherited in a family.

The support group is in touch with women who have as many as eight affected relatives. A case study of the syndrome in four generations has been reported. However, Griffin and Wilson (Dept. Internal Medicine, The University of Texas Southwestern Medical Center at Dallas, Dallas, Texas 75235-8857) state that in one third of cases, family history is non-contributory, suggesting new mutations. A recent genetic study of AIS and carriers within one family concludes that the original mutation had occurred, in this case, in the germ line of the maternal great-grandfather of the patient. McPhaul et al have recently published results on the spectrum of mutations in 31 subjects with AIS.

It is possible to detect, by biochemical means, XX females in a family who may be carriers of the faulty gene. Recent work by the Cambridge research group on the partial form of AIS concludes that although PAIS carrier status can be determined in fertile females in a family, the severity of genital abnormalities in affected offspring cannot be reliably predicted.

At one time, when the androgen receptor gene was being actively researched, it was possible to get research labs to carry out carrier testing on behalf of families, alongside their research. However interest in, and hence funding for this research has faded since most of the androgen receptor gene defects have now been discovered. So although a lot of research work has been done in the UK on the genetics of AIS, no routine carrier testing service has resulted from this, as far as we know, although there are various commercial testing laboratories in the US and continental Europe. The number of families requiring this service is, of course, small since AIS is a rare phenomenon but the demand has increased in recent years, and will probably continue to grow, as intersex becomes less of a secret issue within families and society.

Dr. Gerard Conway at the Middlesex Hospital, London (see Recommended Clinicians) had plans to set up a carrier testing service and was discussing this with Prof. Hughes, but funding may be a problem. The gene on the X chromosome that controls the formation of androgen receptors in tissues has 3,000 code letters. So to find a mutation is like looking for a needle in a haystack. The gene has eight 'fragments' and to map all eight fragments costs about £500 just in materials (2003/04). A commercial lab would charge £2,000-£3,000 to do the test. We understand that Prof. Hughes' hospital in Cambridge will now test other female family members for carrier status in their NHS lab, if the research lab there has already identified the mutation in the 'index case', i.e. in the family member who actually has AIS.

There are three types of biochemical test for carrier status:

In the absence of biochemical testing, the following clues to the presence of carrier status in a family can be used:

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Medical Records

We recommend that if discovering your diagnosis later in life you get hold of a copy of your complete hospital medical records. It is best to do this by enlisting the help of a trusted clinician and asking them to get them for you. Although you can apply for them yourself, medical records staff sometimes provide patients with a cut-down version on the assumption that you will not understand all the techie stuff. If you experience trouble in obtaining them, and you are in the UK, the Patients' Association can help (see the Links to Other Sites page).

There is no reason for there to be photographs in your medical records. They are only useful for recording events that are changing fast, like skin moles. The black bars often seen across the eyes of patients in medical photographs do not diguise their identity: they merely stop the person from looking back at the viewing clinician. See General Refs at foot of page for articles on the ethics of medical photography by Dreger A. (2000) and Creighton et al (2002).

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Facing a Diagnosis

Introduction

This page cannot provide exhaustive coverage of this topic. It is such a huge area that it is almost impossible to summarize it concisely and it is discussed in many other places in our literature, including other pages of this web site. The question of secrecy vs truth disclosure is frequently discussed in our journal/newsletter (ALIAS) in the form of letters/emails, articles, reports on group meetings, discussions and accounts from group members (see ALIAS Contents List). We also recommend you read the following discussions amongst group members, on truth disclosure and related issues, accessible via our Debates/Discussions page:

Canadian Medical Assoc. Journal Discussion

Our 12 Year-Old Selves

Truth Disclosure Discussion

You can also access the text of group members' talks on the subject via the Raising Awareness page. A number of articles on truth-disclosure can be read via our AIS in Articles/Books page. See also Group Meetings and Personal Stories.

Overview

Some clinicians and parents still adopt an old-fashioned, paternalistic attitude and withhold the genetic and gonadal information, but most professional carers now recommend truth disclosure with psychological support and counselling. Unfortunately, keeping the condition a secret can become more important to some parents than acknowledging their child's need for emotional support and full medical care. It wastes mental and emotional energy that is better spent in helping the child come to terms with the truth. Many patients will otherwise seek diagnostic and therapeutic information via medical libraries and bear the burden alone and in silence. Or they will wrestle with perplexing half-truths, or reach false conclusions (e.g. that gonadectomy means they have cancer). The rights of the affected person to assign meaning to their condition via a diagnosis, and perhaps seek out a support group, must also be considered.

If the parents' emotional needs and anxieties are addressed with psychological support and counselling from professionally trained staff, it will be easier for them to be truly supportive of their child. Everyone will feel better if there are no taboos about the subject. Talking, like grieving, is therapeutic. It enables feelings to be confronted and resolved. Pushing the matter under the carpet is just storing up psychological trouble for later.

Dr. Lih-Mei Liao (Consultant Clinical Psychologist at the UCLH/Middlesex Hospitals and one of our advisors) has written a Clinical Psychology Information Leaflet (in PDF format) about help for people whose medical conditions affect their reproductive or sexual development.

Note: You need to have a PDF Reader on your PC in order to access PDF files. See About this Site page for more info.

In 1999 we joined with some other support groups under the guidance of the UK's Genetic Interest Group (GIG) to produce a leaflet aimed at families receiving a diagnosis of a genetic condition, to help them frame the questions they might need to ask of clinical staff (and including a list of possible questions). See Literature page.

It is important that parents encourage discussion with their child, and actively seek out information on their behalf. Preparing the child for intimate personal relationships as an adult should be a priority, tempting as it may be to divert their attention towards substitute goals.

In CAIS, the person will look like a girl and problems of psychosexual identity as a biologically-determined feature of the condition are unlikely. However, secrecy can lead to isolation without psychological support and can cause serious emotional problems. In CAIS, leanings towards heterosexuality, lesbianism or bisexuality seem no different to females in general.

A Phased Approach

Dr. Richard Stanhope (Consultant Paediatric Endocrinologist, Institute of Child Health, 30 Guilford St., London WC1N 1EH, UK) believes that an AIS child (as opposed to an adult) needs first to be told half-truths - things that they can understand but that are not lies. For example, an explanation may have to be given as to why there are scars in the groin due either to a hernia repair or a gonadectomy. This may be explained as "an operation to see whether the ovaries were there" with a further explanation that "that is why oestrogen treatment is needed at puberty". He recommends that the girl should be told about any significant shortening or absence of her vagina at an early age so that she will not attempt intercourse without the appropriate therapeutic help.

At around the mid teens, he says, she should be told everything about her condition, including the karyotype. He says that having listened to adult women with AIS, he has no doubt at all that the diagnosis should be revealed in total, but is not sure about the appropriate age for this. He tends to take his lead from the parents, but in his experience girls in their mid-teens cope with such a diagnosis extremely well. Whether the diagnosis is explained to the patient by an endocrinologist, in the presence or absence of the parents, and with the presence of an expert psychologist, he is a little uncertain. However, he now always insists that the girl is told at a reasonably appropriate age.

Conclusions

An AIS adult, who addressed an endocrinology conference in 1996, concluded her talk as follows:

During the last three years increasing numbers of adults with AIS have made contact with the AIS Support Group, and the very interesting fact is that they do not really talk at all about their XY chromosomes and testes, or in most cases about their infertility (in other words, those things on which doctors and parents seem to concentrate their thoughts and anxieties). The real issues, in CAIS at least, seem to be a) the lack of support, information and therapeutic intervention, due to secrecy, b) lack of pubic hair and menstruation as a rite of passage (and marginalization during puberty as a result), c) vaginal hypoplasia in some cases, and d) being displayed as a freak in front of medical students and having to undergo medical photography (in other words, all those things that doctors and parents dismiss, or fail to acknowledge as being traumatizing).

You may think that my own experience merely reflects the medical practice of a previous generation, but even our younger adult members talk of isolation and shame; a sense of having missed out on adolescence, a feeling of being an alien outside of normal society, a sense of suffering from a condition whose very existence is denied, which is therefore 'invisible' and to which they can ascribe no meaning or validity. These stigmatized people are angry with their parents, especially their mothers - not for passing on the defect, but for not talking; they actively avoid doctors for long periods, they default with their HRT, don't get their bone density monitored and risk osteoporosis; and their XX female relatives are not made aware of their possible carrier status. And all as a direct result of secrecy, lies and half-truths, and a glossing over of their deficiencies, stemming from what appears to them as an unacceptability of their condition in the minds of doctors and parents.

The support group is doing what it can to provide support and information but it is vital that psychology professionals should be involved at the time of diagnosis or information disclosure. In conclusion, I should like to advocate a lot more emphasis on psychological care - in the first instance for parents, and then for the child/teenager - and a much greater awareness of vaginal hypoplasia with improved methods of treatment for this deficiency.

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Some Quotes/Excerpts to Reflect On

In this section we provide some quotes, accounts and stories that, whilst not speaking directly of AIS-like conditions, cast light on emotional reactions to traumatic life events or bad news in general, and which can also be applied to the shock of finding out about an intersex condition. They may not help in the early stages of dealing with bad news but the hope is that they offer insights on what's important when you've had time to catch your breath and think how best to move on. They address issues such as the importance of talking about things, the dangers of denying or smothering the emotional response which is an important part of the grieving... and therefore the healing... process, the destructive nature of secrets etc.

There is no doubt that coming to terms with something like AIS is a huge challenge but one which can make someone into a stronger, more evolved person. After all, most people don't ever have to consider such deep and fundamental questions about the very nature of their being.

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'Normal'

The following paragraph is from p. 295 of Katrina Karkarzis's 2008 book 'Fixing Sex: Intersex, Medical Authority, and Lived Experience' (Duke University Press), which is essenitial reading for all parents of intersex children:

Far from being natural or inherent, concepts of the psychologically or physiologically normal or abnormal have been crafted since the mid-1800s, when the British scientist Francis Galton put forth his eugenic principles and the term normal, which had previously meant “perpendicular”, began to be applied widely to the human body and psyche.

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'Disease Talk' and 'Illness Talk'

"Illness is the experience of living through the disease. If 'disease talk' measures the body, 'illness talk' tells of the fear and frustration of being inside a body that is breaking down. Illness begins where medicine leaves off, where I recognise that what is happening to my body is not some set of measures. What happens to my body happens to my life. My life consists of temperature and circulation, but also of hopes and disappointments, joys and sorrows, none of which can be measured. In 'illness talk' there is no such thing as the body, only my body as I experience it. 'Disease talk' charts the progression of certain measures. 'Illness talk' is a story about moving from a perfectly comfortable body to one that forces me to ask: What is happening to me? Not it, but me...."

"....A person who finds no one willing to take the time and offer the help necessary to bring forth speech will protect him/herself by saying nothing. But the time when I cannot immediately put something into words is usually the time when I most need to express myself..... The problem is finding someone who will help you work out the terms of that expression."  

From At the Will of the Body - Reflections on Illness (Houghton Mifflin, Boston/New York, 1991) by Arthur W. Frank, Prof. of Sociology, University of Calgary, Canada (see also Telling the Illness Story)

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The Five Stages of Grief

Excerpted from obituary in The Times (2 Sept 2004) for Elisabeth Kubler-Ross, “the Swiss born physician whose blunt but human view of the proper care for the dying polarised the US medical establishment”.

At the heart of Kubler-Ross’s eleven published books is her “Five Stages of Grief”... ...In this she posited that a patient, when told that their illness is teminal, will progress through five stages: denial, anger, bargaining, depression and then acceptance... ...Kubler-Ross held that these stages could apply to any dramatic life change...

...She moved to the United States in 1958 and worked in large hospitals... ...”They [dying patients] were shunned and abused; nobody was honest with them,” she said. She made a point of talking to patients with terminal illnesses. “My goal was to break through the layer of professional denial that prohibited patients from airing their innermost concerns,” she wrote...

...Doctors, she said, had become scientists, unable to relate to a terminal patient as anything more than a bundle of components. As a direct result of Kubler-Ross’s crusade, hospices and other terminal-care facilities stopped being leprous backwaters and joined the mainstream of medicine.

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I Do, I Undo, I Redo

I DO is an active state. It's a positive affirmation. I am in control, and I move forward towards a goal or a wish or a desire. There is no fear. In terms of a relationship, things are fine and peaceful. I am the good mother. I am generous and caring - the giver, the provider. It is the "I Love You, no matter what."

The UNDO is the unravelling. The torment that things are not right and the anxiety of not knowing what to do. There can be total destruction in the attempt to find an answer, and there can be terrific violence that descends into depression. One is immobile in the wake of the fear. It is the view from the bottom of the well. In terms of a relationship to others, it's a total rejection and destruction. It is the return of the repressed. I take things away. I smash things, relations are broken. I am the bad mother. It is the disappearance of the love object. The guilt leads to a deep despair and passivity. One retreats into one's lair to strategise, recover and regroup.

The REDO means that a solution is found to the problem. It may not be the final answer, but there is an attempt to go forward. You get clearer in your thinking. You are active and have confidence again. In terms of relationships to others, the reparation and reconciliation has been achieved. Things are back to normal. There is hope and love again.

These are the words of the 89 year-old artist, Lousie Bourgeois, describing her three monumental metal sculptures installed in the turbine hall at the opening of new Tate Modern art gallery in London, and which she described as "sites of encounter" in which the spectator is encouraged to climb.

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The Condition

An AISSG member told us (May 2010):

"In the library I picked up a novel, by American author Jennifer Haigh, called 'The Condition', published by Harper Collins, 2009 (http://www.jenniferhaigh.com/the_condition.html). It's the story of a family where the daughter, Gwen, is found to have Turner's syndrome, and how the family handles (or fails to handle) the situation. There are parallels with the experience of many people with AIS and related conditions - such as secrecy, shame, isolation, life milestones failing to happen, imposed limitations. The story delicately interweaves 'the condition' into how the family splits apart. Gwen eventually finds happiness despite her family trying to sabotage it and the novel's concluding statement (see 'Summing Up' below) is quite thought-provoking. It's also interesting to read what the author says about 'A woman is her body' when asked why she used the condition in her novel (www.jenniferhaigh.com/interview_condition.html)."

Here are some excerpts from the book:

Different Parental Approaches

p.66:
Frank [father]….had Gwen [daughter] karyotyped. From a medical viewpoint the news could hardly be better [a mild form of Turner’s] but Paulette [wife/mother] refused to hear it; she was simply furious. Frank’s explanations were wasted on her. To his amazement she seemed determined to learn as little about Turner’s as possible, as if ignorance would make Gwen’s condition disappear. Any objective discussion of Turner’s incensed her. What sort of father could talk about his own child in such a cold and clinical way.

The truth was that Frank had been a scientist longer that he’d been a father. If he’d been trained to observe in a certain way, to describe his observations in precise terms, that did not imply a lack of feeling for the subject. ….. He wanted simply to help her, to give her the best life possible. Presumably Paulette wanted the same. Yet how to do that was a subject on which they’d never managed to agree.

p.87:
He [Frank] flicked on a lamp and moved a pile of journals from his favourite chair. On top, a battered copy of Endocrinology – he’d subscribed for years, ever since Gwen was diagnosed. Oh, hell: He’d meant to find out – delicately, of course – whether she was seeing a doctor, taking the all-important oestrogen. Oestrogen was crucial for preserving bone density, for heart health. Not to mention the unmentionables: to keep vaginal tissue healthy, elastic and lubricated. Was this a part of her body Gwen ever thought about? His daughter was 34 years old, yet to his knowledge, she’s never had a boyfriend. [Continues on for another page about oestrogen…..]

p.333:
They’d been arguing over Gwen, fights that had become habitual. "We should have her hearing rechecked", Frank said…..It seemed to him a reasonable request. Hearing abnormalities were common in Turner girls. Paulette knew this as well as he did. But to his astonishment, his wife had exploded…… "Why are you always looking for trouble? Why can’t you let anything be okay?" Finally she’d exhausted his patience…. "I just want to know what we’re dealing with. That’s the difference between you and me. You hide your head in the sand. I want to know the truth."

Gwen’s Experience

p.159:
She had never explained herself to anybody. She had been asked but not in a way that required a response.

"What’s your problem? Why are you such a freak?", or
"Describe any way(s) in which your Turner’s syndrome has affected your psychosocial development."

The second question is worse, being unanswerable. She has never been anyone else, anyone normal. …… 'I am not a psycho', she’d written on the questionnaire as she was waiting to see the doctor, 'nor am I very social'. The doctor, if he actually read this, would take it as a symptom of something. Her whole life was considered a symptom of something. Unanswerable.

It wasn’t as if something had happened to her, an accident or injury, an illness that struck overnight…. and left her crippled, a clear case of cause and effect. No. She’d been a child, normal, healthy. Then nothing, not a single thing, had happened. Instead things failed to happen. And how do you explain what has failed to happen? Gwen did not change, other girls did. [Continues for a page or so about (her lack of) puberty….]

p.181:
In her adult life she was sharp and competent, reserved but unfailingly pleasant. In her mother’s presence she regressed to a moody teenager. Her own behaviour sickened her. Paulette, whatever her faults, had been a loving mother; she didn’t deserve such treatment, Gwen knew when she was being insufferable. She simply didn’t know how to stop.

p.183:
She had rehearsed in her mind the way to undress for a man……It hurt a great deal. Her doctor, scolding her again to take her medication, had explained that this was likely. But Gwen hated the pills, which gave her stomach-curdling headaches. She’d stopped taking them long ago. [Goes on about how the encounter fails along with any subsequent possibility of a relationship]

p.172:
[Eventually manages to establish a relationship despite her mother trying to sabotage it…..] Years later, looking back at this time, Gwen barely recognises herself: how terrified, how passive, how crippled by shame.

p.194:
The condition wasn’t all that uncommon; there must have been Turners all over the city. Dozens, hundreds, who knew? Yet despite this, Gwen had never known one personally. Long ago, a doctor had told her parents about a support group in Boston. Her father had been enthusiastic, her mother apprehensive; but for one they’d agreed that it was Gwen’s decision, And Gwen refused to go.

The Family

p.197:
Even within the family, his sister’s condition had always been top secret. "Don’t tell <grandmother> your sister is at the doctor’s". Without ever having asked why, he’d understood the importance of keeping quiet.

Summing Up

p.388:
She no longer wonders what is normal, whether she feels correctly. It is impossible to say. Her whole life she’s known that her condition is untreatable. Now she understands that it requires no treatment. The difference is vast; you could fit a whole life in the gulf between. And so she has.

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General Refs:

See Medical Literature Sites on our 'Links to Other Sites' page for ways of accessing journal articles.

Diagnosis/Carrier Testing References

(scroll down for Truth Disclosure/Psychology References)

Griffin J.E., Wilson J.D: The syndrome of androgen resistance. N. Engl. J. Med. 302:198-209 (1980).

Hodgins M.B., Duke E.M., Ring D: Carrier detection in the testicular feminization syndrome: deficient 5 alpha-dihydrotestosterone binding in cultured skin fibroblasts from the mothers of patients with complete androgen insensitivity. J. Med. Genet. Jun 1984, 21, (3), p178-81.

Stephens J.D: Prenatal diagnosis of testicular feminization. Lancet 2:1038, 1984 (letter).

Pambou O., Ball F., Wurch T., Teulie P.J., Adl T: Testicular feminization syndrome. Prenatal diagnosis: observations apropos of 2 sisters (French): Rev. Fr. Gynecol. Obstet; (1988), Jul-Sep; 83(7-9); pp 547-50.

Shull B.L., Taylor P.T.: Testicular feminization syndrome: a case study of four generations. South Med. J; (1989) Feb; 82(2); p251-4.

Quigley C.A., Friedman K.J., Johnson A., Lafreniere R.G., Silverman L.M., Lubahn D.B., Brown T.R., Wilson E.M., Willard H.F., French F.S: Complete deletion of the androgen receptor gene: definition of the null phenotype of the androgen insensitivity syndrome and determination of carrier status. J. Clin. Endocr. and Metab. 74 (4) p927-33 (1992).

Lobaccaro J.M., Lumbroso S., Pigeon F.C., Chaussain J.L., Toublanc J.E., Job J.C., Olweniczak G., Boulot P., Sultan C: Prenatal prediction of androgen insensitivity syndrome using exon 1 polymorphism of the androgen receptor gene. J. Steroid Biochem. Mol. Biol. Dec 1992, 43 (7) p659-63.

Batch J.A., Williams D.M., Davies H.R., Brown B.D., Evans B.A.J., Hughes I.A, Patterson M.N: Androgen receptor gene mutations identified by SSCP in fourteen subjects with androgen insensitivity syndrome. Human Molecular Genetics, Vol. 1, No. 7, 497-503, 1992.

Batch J.A., Patterson M.N., Hughes I.A: Androgen insensitivity syndrome. Reproductive Medicine Review 1992, 1: 131-150.

Batch J.A., Davies H.R., Evans B.A.J., Hughes I.A, Patterson M.N: Pheno variation and detection of carrier status in the partial androgen insensitivity syndrome. Arch. Dis. Childh. (1993); 68: 453-457.

McPhaul M.J., Marcell M., Zoppi S., Griffin J.E., Wilson J.D: Genetic Basis of Endocrine Disease 4: The spectrum of mutations in the androgen receptor gene that causes androgen resistance. J. Clin. Endocr. and Metab. Vol 76, No 1 (1993).

Ahmed S.F. et al: Phenotypic Features, Androgen Receptor Binding and Mutational Analysis in 178 Clinical Cases Reported as Androgen Insensitivity Syndrome. J. Clin. Endocr. and Metab., Vol 85, No. 2, 658 - 665 (2000).

Minto C. L. et al: XY Females: Revisiting the Diagnosis. BJOG (an International Journal of Obstetrics and Gynaecology), Vol. 112, pp. 1407-1410, October 2005.

Ahmed, S.F. et al: UK guidance on the initial evaluation of an infant or an adolescent with a suspected disorder of sex development (Society for Endocrinology Clinical Guidance Article) Published online 10 June and in Clinical Endocrinology 75(1), 12-26, July (2011).

Truth Disclosure/Psychology References

Negulici E., Christodorescu D. and Alexandru S: Psychological aspects of the testicular feminization syndrome. Psychosomatic Medicine 30(1):45-50 (1968). Interesting early paper, very much 'of its time'.

Elizabeth Bing and Esselyn Rudikoff: Divergent Ways of Coping with Hermaphrodite Children. Medical Aspects of Human Sexuality (Dec 1970): 77. Two families who adopted different attitudes to dealing with their intersex children. Discussed in Feder E.K: 'Doctor's Orders': Parents and Intersexed Children. In The Subject of Care - Feminist Perspectives on Dependency, Kittay E.F. and Feder E.K. (eds), Rowman and Littlefield (2002).

Minogue et al: Case Studies - The Whole Truth and Nothing But the Truth? Hastings Center Report, Oct/Nov 1988. A philosophical debate covering opposing viewpoints on the question of truth disclosure in AIS. For transcript see AIS in Articles/Books.

Michael Green and Benjamin Horowitz: Reflections - Until I Met Mary. Journal of General Internal Medicine, Vol 4, Nov/Dec 1989. A doctor's account of his personal conflicts in deciding whether to disclose the truth to a patient. For transcript see AIS in Articles/Books.

Janet Goodall: Helping a Child to Understand her Own Testicular Feminization. The Lancet, (337), Jan 5, 1991. A key paper by a paediatrician (now retired) suggesting a phased approach based on developmental milestones. For transcript see AIS in Articles/Books.

Breaking Bad News: A Guide for Healthcare Professionals, by Dr. Robert Buckman, Papermac, 1992, ISBN 0-333-548647.

Dr. Elizabeth Scott: Does She Need to Know.....? GP Magazine, 19 Feb 1993. For transcript see AIS in Articles/Books.

Sex Errors of the Body and Related Syndromes, by John Money. A book written for parents and patients, as well as counsellors and physicians. Paul H. Brookes Publishers, P.O. Box 10624, Baltimore, MD 21285-0624, USA, 1994.

Slijper F.M.E. et al: Neonates with Abnormal Genital Development Assigned the Female Sex: Parent Counseling. Journal of Sex Education and Therapy, 20/1 (1994), 9-17.

Weiss, M. (1995) ‘Fence Sitters: Parents’ Reactions to Sexual Ambiguities in their Newborn Children’. Semiotica, 107: 39-40.

Natarajan, A: Medical Ethics and Truth Telling in the Case of Androgen Insensitivity Syndrome. Canadian Medical Association Journal, 154 (4) 15 (Feb 1996). See Debates/Discussions.

Katz, S: Physician's experience with disclosure in androgen insensitivity syndrome. Canadian Medical Association Journal 155: 632 (1966).

Williams, J: Androgen insensitivity syndrome: a survey of the terminology, language and information found in medical textbooks, scientific papers and the media. Thesis (M.Sc.) Science Communication, Department of Humanities, Imperial College, London (1996).

Groveman S: Medical, Psychological and Legal Issues in the Clinical Management of the Complete Androgen Insensitivity Syndrome Patient into Adulthood. A paper drafted in 1997 by Sherri Groveman who founded our sister group, AISSG US. It covers counselling, the clinical examination, truth disclosure, peer group support, vaginal construction, and gonadectomy and informed consent.

Chrysalis 'Intersex Awakening' issue. Special issue of Chrysalis: J. Transgressive Gender Identities. 2: 5, Fall 1997/Winter 1998. Articles by Morgan Holmes ('Is growing up in silence better than growing up different?'), Alice Dreger ('Doctors Containing Hermaphrodites: The Victorian Legacy'), Suzanne Kessler ('Meanings of Gender Variability: Constructs of Sex and Gender'), Tamara Alexander ('Silence = Death') and others. Available here or at http://www.isna.org/drupal/chrysalis. Some of the articles also appear in Intersex in the Age of Ethics, edited by Alice Dreger.

Slijper F.M.E. et al: Long-term psychological evaluation of intersex children. Arch. Sex. Behav., 27: 125-44, 1998. Diamond, M: Letter to the Editor: Intersexuality: Recommendations for management (responding to Slijper et al). Arch. Sex. Behav. , 27: 634–641, 1998. Note: Diamond's letter starts on p.8 of the PDF. Chase, C: Letter to the Editor (responding to Slijper et al) Arch. Sex. Behav., 28: 103–105, 1999. Slijper F.M.E. et al: Letter to the Editor. Response to Milton Diamond and Cheryl Chase. Arch. Sex. Behav., 29: 119-121, 2000.

Hines M. et al: Gender Development and Psychological Well Being in Patients with Androgen Insensitivity Syndrome (AIS). Horm. Res. 50 (suppl. 3): p.116, 1998

MacKinnon A.E: Androgen insensitivity syndrome: How much to tell families of girls with inguinal herniae regarding the possible diagnosis. (15 Nov ‘98). Article that was originally on the web site of the British Association of Paediatric Surgeons. Somewhat paternalistic stuff, with medics acting as gatekeepers to diagnostic information without mentioning possible involvement of a clinical psychologist.

Preves S: Sexing the Intersexed: Lived Experiences in the Socio-Cultural Context. Doctoral Thesis, University of Minnesota (1999). Summarized in her 2000 paper 'Negotiating the contstraints........', see lower down.

Hines, M., Ahmed, S.F., Fane, B.A., Hughes, I.A: Gender development and psychological well being in individuals with complete androgen insensitivity syndrome (CAIS). Women recruited through physicians compared to those recruited through support groups and to unaffected male and female controls. Archives of Disease in Childhood. 80(1S) Supplement:47A, May 1999.

Kitzinger C: Intersexuality: Deconstructing the Sex/Gender Binary. In Feminism and Psychology: Sage Publications, 1999; 9: 493-498, Nov 1999. An essay reviewing three books: Suzanne Kessler's Lessons from the Intersexed (1998), Alice Dreger's Hermaphrodites and the Medical Invention of Sex (1998), and Marianne van den Wijngaard's Reinventing the Sexes: The Biomedical Construction of Femininity and Masculinity (1997).

Preves S: Negotiating the Constraints of Gender Binarism: Intersexuals’ Challenge to Gender Categorization Current Sociology 48(3): 27-50 (2000).

Kitzinger C: Women with Androgen Insensitivity Syndrome (AIS). in Ussher J. (ed.) Women's Health: An International Reader, Leicester: British Psychological Society, www.bps.org.uk, (2000).

Murphy M: Intersexuality: Still Taboo in the 21st Century. M.Sc. thesis, Dublin City University, 2000.

Nahman M.R: Embodied Stories, Pragmatic Lives: Intersex Body Narratives on the Net. M.A. thesis, Graduate Program in Social Anthropology, York University, Toronto, Canada, Sept 2000.

Alderson J: XY Women with Androgen Insensitivity Syndrome (AIS): A Qualitative Study. D. Clin. Psychol. thesis, University of Leeds School of Medicine, Academic Unit of Psychiatry and Behavioural Sciences, Sept 2000. For paper based on the thesis see Research Studies.

Smith S: Experiences of sexuality reported by women with intersex conditions who have undergone some form of genital modification: A tale of two sexes? D. Clin. Psychol. thesis, Department of Psychology, University of East London, Romford Rd., Stratford, London E15 4LZ, 2000. See summary in "13th UK Group Meeting" in ALIAS No. 19. For paper based on the thesis see Research Studies.

Rye B.J: Attitudes toward a woman with AIS: Implications for disclosure. Study by a psychologist from Ontario, Canada, who herself has eight AIS relatives. 2000. See "Extended AIS Family" in ALIAS No. 10 and "5th US Group Meeting" in ALIAS No. 18.

Slijper F.M.E. et al: Androgen insensitivity syndrome (AIS): Emotional reaction of parents and adult patients to the clinical diagnosis of AIS and its confirmation by androgen receptor gene mutation analysis. Hormone Research 53: 9-15, 2000.

Dreger A. Jarring Bodies: Thoughts on the Display of Unusual Anatomies. Perspectives in Biology and Medicine, Vol. 43, No. 2, Winter 2000.

Wisniewski A.B., Migeon C.J., Meyer-Bahlburg H.F.L., Gearhart J.P., Berkovitz G.D., Brown T.R., Money J: Complete Androgen Insensitivity Syndrome: Long-Term Medical, Surgical, and Psychosexual Outcome (or here). J. Clin. Endoc. & Metab., Vol. 85, No. 8, 2000.

Le Maréchal K. (Gt. Ormond St. Children's Hospital, London): Bringing up an XY girl: Parents' experience of having a child with androgen insensitivity syndrome. Unpublished thesis, 2001. Results summarised in Carmichael P.A. and Ransley P.G. (2002), see lower down.

Daaboul J. and Frader J: Ethics and management of the patient with intersex: a middle way. J. Pediatr. Endocrinol. Metab. 14: 1575-1883, 2001.

Abramsky L: What Parents are Told after Prenatal Diagnosis of a Sex Chromosome Abnormality: Interview and Questionnaire Study. British Medical Journal 322 (Feb 24, 2001), 463-466.

Preves, S: Sexing the Intersexed: An Analysis of Sociocultural Responses to Intersexuality. Signs 27(2) Winter, 2001, 523-556.

Feder E.K: 'Doctor's Orders': Parents and Intersexed Children. In The Subject of Care - Feminist Perspectives on Dependency, Kittay E.F. and Feder E.K. (eds), Rowman and Littlefield (2002). An interesting article on how doctors unintentionally complicate parents' work in caring for their children with non-standard genitals.

Gayner J., Witchel S.F. and Lee P.A: Assessing Care of Intersex Patients: Initial Survey Results. Pediatr. Res. 51: suppl 119A (abstract), 2002.

Creighton S., Alderson J., Brown S., Minto C.L. Medical photography: ethics, consent and the intersex patient. British Journal of Urology (BJU) International, Jan 2002: 89: 67-72.

Melton Lisa: My Doctor Lied to Me. A UK group member features in this article (on Dr. Cathy Minto's Well Aware web site).

Cull Melissa: Treatment of intersex needs open discussion. (letter) BMJ, 13 April 2002, 324: 919.

Carmichael P.A. and Ransley P.G: Telling Children about a Physical Intersex Condition. Intersex: Gender Identification, Outcomes and Controversies Part I. In Dialogues in Pediatric Urology, Vol 25, No. 6, June 2002. Summarises the 2001 study of Kate Le Maréchal cited higher up.

Groveman, S: Hyperplasia and Androgen Insensitivity Syndrome in the ‘Patient Perspectives on Endocrine Diseases’ secton of G.M. Besser and M.O. Thorner (eds) Comprehensive Clinical Endocrinology, 3rd Edition (Mosby), 2002. Textbook chapter written by the founder of our US sister group AISSG-USA.

Migeon C. et al: 46,XY Intersex Individuals: Phenotypic and Etiologic Classification, Knowledge of Condition, and Satisfaction with Knowledge in Adulthood. Pediatrics 110/3 (Sept 3, 2002).

Berenbaum, S: Management of Children with Intersex Conditions: Psychological and Methodological Perspectives. Growth, Genetics and Hormones, March 2003, 19(1) View online at www.gghjournal.com.

Hines, M., Faisal Ahmed, S., and Hughes, I. A: Psychological Outcomes and Gender-Related Development in Complete Androgen Insensitivity Syndrome. Archives of Sexual Behavior, 32 (2), 93-101 (2003)

L. M. Liao: Learning to assist women born with atypical genitalia: journey through ignorance, taboo and dilemma. In: L. M. Liao and L. Glover (eds) Journal of Reproductive and Infant Psychology, special issue (Reproductive Psychology: Integrating Theory and Research in Practice), Vol. 21, No. 3, August 2003.

Koyama, E. Teaching Intersex Issues (print double-sided then assemble and fold into A5 booklet), Confluere Publications, Portland, Oregan (2003) or via www.ipdx.org.

Warne G. L: Support Groups for CAH and AIS. The Endocrinologist (special issue) Volume 13 (3), May/June 2003, pp 175-178. Dr. Garry Warne's experience of support groups in Australia.

Creighton S. M., Minto C. L., Liao LM, Alderson J. and Simmonds M: Meeting Between Experts: Evaluation of the First UK Forum for Lay and Professional Experts in Intersex. Patient Education and Counselling, Volume 54, Issue 2, August 2004, pp 153-157 (also available on ScienceDirect). Discussion of the 'Intersex in the New Millennium' symposium, staged by UCLH clinicians and AISSG UK in Jan 2002 (see Announcements page on this site for details of the symposium).

Hester D: The Rhetoric of the Management of Intersexed Children. Genders 38 (2003). See also author's web page, at http://www.ars-rhetorica.net/David/index.html.

Chase C: What is the agenda of the intersex patient advocacy movement? Endocrinologist 2003; 13: 240-2.

Alderson J., Madill A. and Balen A: Fear of Devaluation: Understanding the Experience of Women with Androgen Insensitivity Syndrome. Br. J. Health Psychol (2004) 9: 81-100.

Simmonds M: Patients and Parents in Decision Making and Management, in Balen A. et al (Eds.): Paediatric and Adolescent Gynaecology: A Multi-disciplinary Approach (pp. 205-228). Cambridge University Press (2004). See http://www.cup.org/titles/catalogue.asp?isbn=0521809614.

Hester D: Intersex(es) and Alternative Strategies of Healing: Medicine, Social Imperatives and Counter-communities of Identity Zeitschrift für Ethik in der Medizin (2004). See also author's web page, at http://www.ars-rhetorica.net/David/index.html.

Hester D: Intersex(es) and Informed Consent: How Physicians' Rhetoric Constrains Choice Theoretical Medicine 25, 21-49 (2004). See also author's web page, at http://www.ars-rhetorica.net/David/index.html.

Kitzinger S: The Myth of the Two Biological Sexes. In: Liao LM. and Boyle M., editors. The Psychologist (Intersex special issue: "Born Different: People with Male and Female Characteristics"), Vol 17, No. 8, 451-454 (Aug 2004). Journal of the British Psychological Society (http://www.bps.org.uk/publications/thepsychologist.cfm).

Liao LM. and Boyle M., editors. The Psychologist (Intersex special issue: "Born Different: People with Male and Female Characteristics"), Vol 17, No. 8, 459-462 (Aug 2004). Journal of the British Psychological Society (http://www.bps.org.uk/publications/thepsychologist.cfm).

Preves, S: Out of the Operating Room and onto the Streets: Exploring the Impact of Intersex Media Activism. Res. Pol. Soc. 13: 179-223 (2004). Also reprinted in Cardozo Journal of Law & Gender 12(1):247-288 (2005).

Diamond M. and Watson L.A: Androgen insensitivity syndrome and Klinefelter's syndrome: sex and gender considerations. Child and Adolescent Psychiatric Clinics of North America (Sex and Gender issue - Guest editors Milton Diamond and Alayne Yates) 13, (2004), 623-640. Paper that came out of a collaboration between Milton Diamond and the UK and US AIS Support Groups.

Conn J., Gillam L. and Conway G: Revealing the Diagnosis of Androgen Insensitivity Syndrome in Adulthood (part of an occasional series, Ethics in Practice). British Medical Journal, Vol. 331, pp. 628-630 (17 Sept 2005). Via BMJ site http://bmj.com/cgi/content/full/331/7517/628?etc.

Gallacher L: The Psychology of Intersex: Research into the Experiences of Individuals/Parents who have Experienced Androgen Insensitivity Syndrome or Congenital Adrenal Hyperplasia within the UK. MA Research degree dissertation (2005). See Raising Awareness for access to a copy of dissertation.

Liao L.M: Reflections based on psychological research and practice in intersex. Feminism & Psychology 15, 424-430, 2005.

Hester D: Intersex and the Rhetorics of Healing. In Ethics and Intersex, Sharon E. Sytsma (Ed.), Springer, 2006. See here for the book's contents list. Access (fee payable) via http://www.springerlink.com/content/q303r8/. See also author's web page, at http://www.ars-rhetorica.net/David/index.html.

Dreger A.D: Intersex and Human Rights: The Long View. In Ethics and Intersex, Sharon E. Sytsma (Ed.), Springer, 2006. See here for the book's contents list. Access (fee payable) via http://www.springerlink.com/content/q303r8/.

Pfafflin F. and Cohen-Kettenis P: Clinical Management of Children and Adolescents with Intersex Conditions. In Ethics and Intersex, Sharon E. Sytsma (Ed.), Springer, 2006. See here for the book's contents list. Access (fee payable) via http://www.springerlink.com/content/q303r8/.

Duguid A. et al: The psychological impact of genital anomalies on the parents of affected children. Acta Pædiatrica (2007) 96, 348–352.

Schutzmann K., Brinkmann L., Schacht M. and Richter-Appelt H: Psychological Distress, Self-Harming Behavior, and Suicidal Tendencies in Adults with Disorders of Sex Development. Archives of Sexual Behavior DOI 10.1007/s10508-007-9241-9 (2007).

D'Alberton F: Telling stories, telling lies: The importance of a progressive full disclosure of DSD. Presentation given at the ISHID 2nd World Congress on Hypospadias and Disorders of Sex Development (DSD), Rome 16-18 November 2007. Dr D'Alberton works closely with our sister group in Italy, AISIA.

Garrett, Cameryn C. and Kirkman, Maggie: Being an XY Female: An Analysis of Accounts From the Website of the Androgen Insensitivity Syndrome Support Group, Health Care for Women International, 30:5, 428 — 446 (2009). http://dx.doi.org/10.1080/07399330902785380.

Bean E.J., Mazur T., and Robinson A.D: Mayer-Rokitansky-Kuster-Hauser Syndrome: Sexuality, Psychological Effects, and Quality of Life. J. Pediatr. Adolesc. Gynecol. 22:239-346 (2009).

Wisniewski A. and Mazur T: 46,XY DSD with Female or Ambiguous External Genitalia at Birth due to Androgen Insensitivity Syndrome, 5alpha-Reductase-2 Deficiency, or 17beta-Hydroxysteroid Dehydrogenase Deficiency: A Review of Quality of Life Outcomes. International Journal of Pediatric Endocrinology, Volume 2009.

Liao L-M., Green H., Creighton S.M., Crouch N.S. and Conway G.S: Service users’ experiences of obtaining and giving information about disorders of sex development. BJOG, 117:193–199 (2010).

Malmqvist E., and Zeiler K: Cultural Norms, the Phenomenology of Incorporation, and the Experience of Having a Child Born with Ambiguous Sex. Social Theory and Practice 36:133-156 (2010).

Cull M.L & Simmonds M: Importance of Support Groups for Intersex (Disorders of Sex Development) Patients, Families and the Medical Professsion. Sexual Development, published online 3 July (2010).

Wiesemann C: Ethical Guidelines for the Clinical Management of Intersex. Sexual Development, published online 10 July (2010).

D'Alberton F: Disclosing Disorders of Sex Development and Opening the Doors. Sexual Development, published online 21 July (2010).

Tamar-Mattis A: Peer support a lifeline for many with DSD. One article (01 Oct 2010) of a number by Anne Tamar Mattis, a US medico-legal expert involved in an organisation called Advocates for Informed Choice (AIC) “promoting the civil rights of children born with variations of sex anatomy”, who writes for an ongoing column in magazine/journal called Endocrine Today.

Cohen-Kettenis, P.T: Psychosocial and psychosexual aspects of disorders of sex development Best Practice & Research Clinical Endocrinology & Metabolism 24: 325–334 (2010).

Brain, C. et al: Holistic Management of DSD Best Practice & Research Clinical Endocrinology & Metabolism 24: 335–354 (2010).

Crissman H.P., Warner L., Gardner M., Carr M., Schast A., Quittner A.L., Kogan B., Sandberg D.E: Children with disorders of sex development: A qualitative study of early parental experience. Int J Pediatr Endocrinol; 2011(1):10 (2011).

Liao L-M., Tacconelli E., Wood D., Conway G., Creighton S.M: Adolescent girls with disorders of sex development: A needs analysis of transitional care. J Pediatr Urol, Dec, 6(6), 609-13 (2010).

Sanders C., Carter B., Goodacre L: Parents need to protect: influences, risks and tensions for parents of prepubertal children born with ambiguous genitalia. J Clin Nursing, Online 02 June (2012).

Hullmann S.E., Fedele D.A., Wolfe-Christensen C., Mullins L.L., Wisniewski A.B: Differences in adjustment by child developmental stage among caregivers of children with disorders of sex development. Int J Pediatr Endocrinol; 2011;2011(1):16.

Streuli, J., Kohler, B., Werner-Rosen, K. and Mitchell, C: DSD and Professionalism from a Multilateral View: Supplementing the Consensus Statement on the Basis of a Qualitative Survey Advances in Urology, Volume 2012, Article ID 185787, doi:10.1155/2012/185787 (2012).

Magritte E: Working together in placing the long term interests of the child at the heart of the DSD evaluation Journal of Pediatric Urology, Nov, 8(6) ___?___ (2012). Published online 12 Sept.

Maretti M., Fontanella L., Fortuna F., Sarra, A: The social dimensions of changing in gender identities across the world. Working Paper 1/2012, Dep. of Law and Social Sciences, University of Chieti-Pescara, Italy (2012).

On the Management of Differences of Sex Development: Ethical Issues Relating to "Intersexuality" (Nov 2012) Opinion No. 20/2012. Swiss National Advisory Commission on Biomedical Ethics, NEK-CNE, Berne. www.nek-cne.ch.

Lih-Mei Liao & Katrina Roen (Eds.): Psychology & Sexuality journal special issue titled 'Intersex/DSD post-Chicago: new developments and challenges for psychologists.' This collection of articles aims to provide an update on the diverse linguistic frameworks, conceptualisations, practices and experiences relating to intersex/‘disorders of sex development’ (DSD) since the 2005 'intersex consensus' conference in Chicago. The aim is achieved via contributions from service users, advocates, medical specialists and psychologists. The individual articles are now published online (the editorial introduces all the articles) and will be brought together as a single volume as Vol 5, Issue 1, March (2014).

Pasterski, V., Mastroyannopoulou, K., Wright, D., Zucker, K. and Hughes, I.A: Predictors of Posttraumatic Stress in Parents of Children Diagnosed with a Disorder of Sex Development. Arch. Sex. Behav. Published online 02 Oct (2013).

Streuli, J.C., Vayena, E., Cavicchia-Balmer, Y. and Huber, J: Shaping Parents: Impact of Contrasting Professional Counseling on Parents’ Decision Making for Children with Disorders of Sex Development. J. Sex. Med. (2013).

Note: there is an overlap between issues of truth disclosure, informed consent and genital surgery. Many of the articles listed at the bottom of our Genital Plastic Surgery page therefore cover the way in which intersex is handled psychologically by the medical profession. See also AIS in Articles/Books page.


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