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Glossary

The Role of the Support Group

A presentation prepared by the AIS Support Group UK for a symposium “Intersex in the New Millennium“, held at the Institute of Child Health, London, 28th Jan 2002. A somewhat shortened version was actually used for the symposium and the quotes at the end were not used.

Introduction

The AIS Support Group was started in the UK by the mother of an AIS infant in 1988. Until I met her, in 1991, she was operating alone, had no literature and was only in touch with a handful of parents, referred to her by other organisations.

When I started developing literature in '93, and planned our first group meeting in '95, I embarked on a mission to bring intersex conditions such as AIS out from the dark shadows of secrecy and taboo, and into the public consciousness…. and to empower parents and patients with as much knowledge as I could gather together.

At that time, one or two social scientists were starting to evaluate intersex and were pointing out that these conditions were "humanly possible but socially unthinkable".

Anne Fausto-Sterling published an article in '93 called The Five Sexes: Why Male and Female are Not Enough. She talked about the range of genital appearance that can occur in nature and then added "....As it happens, this physiological reality is almost unknown outside medicine……and that fact, alone, is symptomatic of a society unwilling to accept the truth about its members."

In those early days I was fearful that my efforts to burst the secrecy bubble would create a backlash from the medical community…. and unwelcome attention from the media. The first never really happened, apart from perhaps two or three clinicians expressing disapproval. And the second has taken five years to manifest….. but journalists are now making up for lost time in a big way!

We now have an enquiry list of some 500 people, with our subscribers being split almost equally between patients and parents (slightly fewer parents than adults).

I will talk about…

1. Our general aims

2. Our relationship to health professionals

3. The benefits for our members

4. Our activities in the world at large.

What are our general aims….?

1. "Support" is defined in the dictionary as "to keep from sinking or failing". In this, we share a common goal with clinicians.

2. We are not clinical practitioners and are sensitive to our responsibilities. We offer practical support with information, contacts and meetings….to bring out the confidence to make informed decisions.

3. We wish to win hearts and minds….. via a professional approach, and by debate and explanation of our members' experiences…. particularly on the need for truthful and timely disclosure of diagnostic information.

4. We wish to continue supporting research, and initiatives which lead to improvements in patient care.

Health professionals…….

The start of our relationship with the clinicians at UCLH and Leeds Hospitals was……… our invitation from Dr Richard Stanhope to take part in an AIS conference at the Royal Society of Medicine in April 95. The title was The Management of Intersex into Adult Life - Especially Androgen Insensitivity/Testicular Feminization.

Our presentation made it clear that many patients were suffering due to a policy of secrecy, leading them to self-diagnose via medical libraries and to live in silence and isolation thereafter, with no psychological support.

This was possibly the first time that a patient group had been at a conference on equal terms with clinicians and, although it seemed that some of the more 'old-school' members of the audience had not approved of this, we received highly appreciative letters from several doctors including Dr Gerard Conway of UCLH and Mr Adam Balen of Leeds General Infirmary, praising our involvement, our presentations and our general endeavours.

We feel that a multi-disciplinary approach……… is long overdue and requires expertise in gynaecology, endocrinology (paediatric and adult) and in clinical psychology, with access also to specialised genetic testing. The psycho-social aspects of intersex are large and have only just started to be addressed by clinicians. The doctors at these two centres are at the forefront of this shift in emphasis.

The first meeting we attended at UCLH to discuss this initiative……. was in Aug '97. A multi-disciplinary clinic has now been operating there, and in Leeds, for several years and we get very enthusiastic feedback from our members who attend. Clinicians from these and other hospitals have also been regular speakers at our weekend group meetings ….and in '97 Dr Stanhope drew up an Intersex Patient's Charter for us (a copy of which is on our web site).

Another innovative venture is the occasional UCLH Clinic 'Open Day'….. This is a hospital-based forum to which the clinic's XY female patients are invited and at which the doctors explain medical issues and we talk about the support group. Afterwards, the clinicians in various specialties are available for one-to-one consultations.

The idea of us being involved in research was first suggested… in March 98 and we have now helped with a number of studies……. details of which are on our web site. This has to be mutually beneficial. Researchers get a ready-made pool of volunteers, and we get to steer research in directions that are useful to our members. We all recognize the dangers of a group-member bias, and we aim to supplement recruits from other quarters such as hospital clinics.

So …. what do we provide for our group members…..?

We usually see three phases in helping our enquirers:

1. Initially there is frontline support and information…..where we are dealing with a confusion and emotional outpouring, that needs a fire-fighting approach on our part.

2. Then there is the medium term (where the person gets involved in reading, learning and absorbing)

3. And finally the longer term (where the person meets others, leading to normalisation and empowerment)

For frontline support and information……

.... we have ________, our information/support officer, who does a brilliant job looking after our PO Box and phone helpline, often dealing with people who are in severe distress….a very draining task at times. I am at another location and look after the email enquiries that come in via our web site.

What happens in the medium term……?

This is probably is where our newsletter, ALIAS (Learning About AIS), and our web site come into their own.

1. There has been an over-emphasis on the medical aspects of intersex. It is largely a psycho-social issue for most patients.

2. But some medical aspects are important, and our literature aims to explain the terminology and concepts.

3. The medical and social aspects have been kept apart for too long. Our literature aims to merge or depolarise these issues.

4. Hearing people's stories is very important. Patients/parents need, in the sense of desire, to hear people's stories so they feel they are not alone. Doctors need, in the sense of ought, to hear them so they can learn to treat the whole person.

What about the longer term aspects….?

This is probably the most important phase, and we'll consider the adults first (and these will be women since the vast majority of our members identify as women), and then the parents.

Adults

The best therapy.....

.....(together with psychological counselling) is to be in touch with others and yet this has been the action that, in the past, many doctors have been least willing to facilitate. Patients become highly suspicious when doctors go 'over the top' in emphasising their normality, or their femaleness, yet seem determined to keep them from discussing things with other patients. However, meeting others will definitely normalize things for the patient.

People are constantly telling us that they are "absolutely amazed that there are others with the same story" and…..usually after attending their first group meeting….. that they "no longer feel like a one-off freak". Women talk about gaining a sense of empowerment via the group, about gaining a label for their condition, about understanding the medical jargon at last. It's partly the comfort of knowing what the outer limits are and that all the cards are on the table.

Some members choose to revisit the past ……

Hearing how others have exorcised what happened to them in childhood or adolescence often inspires people to seek access to their medical records.

They may need to come to terms with non-essential childhood surgery done without their informed consent. Seeing what was discussed about you, and possibly seeing clinical photographs of yourself, can be very painful indeed but it can also be cathartic and empowering in piecing the jigsaw together and moving on.

Some women even contact their early specialists in order to "level the playing field". This can be beneficial for both parties. A 25 year-old with CAIS told how 8 years ago a doctor had told her that he was removing her ovaries. For the next 6 and a half years, she'd been puzzled and then extremely angry that he hadn't preserved any of her eggs for future assisted reproduction. She was relieved to eventually find out about AIS and to know that she never had ovaries, that there were no eggs to harvest. She visited him again to express her anger and to give him support group literature.

Contact with the group aids confidence and communication skills…..

An XY woman likened her family situation to 'a trick done with mirrors' where "the parents project their unease and the child reflects it back (compounded by the probable unease of the treating physician) so that the whole issue gets passed around like a hot potato." It was also described as "a huge pink elephant in the middle of the sitting room whose presence no one would ever acknowledge."

If the patient has never articulated the words describing her condition to 'safe' people then she will not be able to play an active role when facing a doctor in a threatening environment. She is more likely to behave as a defensive, monosyllabic child who wants to leave the room as quickly as possible, rather than the intelligent, communicative adult that she most likely is in other areas of her life.

If the patient is used to talking about things, then there's a chance of an 'adult to adult' exchange with the doctor. It's a matter of taking 'ownership' of one's condition. Talking with others enables it to be integrated into one's persona, so that it's no longer a huge external burden or monster, always held at arm's length and waiting to crush you at any moment. It lessens the fear of breaking down in front of doctor at the mere mention of your condition because that's the only time the words are ever spoken out loud.

Our members gain self-responsibility or autonomy……

People gain information via the group that helps them take responsibility for their health care. They learn to persuade clinicians that they are at risk of osteoporosis, and need bone density scans, even though they are not in the older, post-menopausal risk group. Another very common cry from new members is "I didn't even know about the increased risk of osteoporosis in AIS.... [or]…..I didn't know about carrier status.... until I joined the support group". Some were not prescribed HRT following early orchidectomy, and now, osteoporotic in early middle-age, are considering legal action.

They learn how to obtain free UK prescriptions for their long-term HRT. They hear of the amazing benefits of vaginal oestrogen cream in alleviating, even curing cystitis, and in facilitating the use of vaginal dilators.

Some patients may even decide to reject the genital surgery that seemed at one point…..when the doctor was the only one doing the talking….. to be the only answer…… This is because finding that your problems/issues are by no means unique, reading intersex discourses and realising that some people take pride in being intersexed, intergendered etc., can lead you to value your body as it is.

What about the rights of carriers……?

In the case of AIS, denial and secrecy also cause problems for XX women in the family who might be carriers and who have a right to make informed reproductive choices.

A 37 year-old AIS woman was at a group meeting with her carrier sister. The sister related how she only learnt about AIS when she became pregnant in her 30s (even though her AIS sister had been diagnosed in her teens). She would very much have liked the chance to rehearse her feelings about all the implications/choices (pre-natal tests, abortion etc.) before getting pregnant.

It sometimes works the other way round. At the same meeting a CAIS 35 year-old told how she had learnt her diagnosis late in life…. not from a doctor or from her parents…. but in a letter from a cousin. She tearfully explained how other people in her family (e.g. carriers) had been told more about her condition than she had. Being ostracized had been far more painful to her than the diagnostic knowledge itself.

As AIS becomes less of a closet issue within families, there will be an increased demand for carrier testing services. To-date this has only been available on an ad hoc basis, as a favour on the back of genetic research into the androgen receptor gene, for which funding is now drying up.

Finding their voice at last……

....has enabled XY women to inform clinicians of their real concerns. For a long time doctors have been talking about them, without actually talking with, or listening to them.

Overall, the main concerns seem to be a) the major problem of secrecy, leading to isolation with lack of information and support, b) the devastating effects of being displayed as a 'freak' in front of medical students and being photographed c) the immensely stigmatizing medical terminology used ('genetic male'….with 'male' used as a noun…. 'male pseudo-hermaphrodite', 'hairless pseudo-female', 'sexually infantile [nipples]' etc…..all supposedly 'behind their backs' but which any patient can read in their local academic bookshop) and d) lack of certain female bodily attributes and functions. Generally these are the things that doctors and parents dismiss, gloss over, or fail to acknowledge as being traumatizing.

The things that seem…..in the longer term, and with appropriate support…. to be lesser issues are the XY chromosomes and the testes (neither are discussed much at our meetings), infertility in many cases, and gender identity (in CAIS at least). That is, all those things on which doctors and parents concentrate their thoughts/ anxieties.

It seems that the medical profession has been worrying for years about what might be called a "deficient maleness" in conditions like AIS (and some even talk about CAIS patients in these terms in their research papers), whereas patients have been mainly concerned with their "lack of female attributes" and this is what they talk about at meetings.

Things like:

a) lack of menstruation as a rite of passage

b) absence of pubic hair (in CAIS)

c) vaginal length, and size of clitoris and labia

d) sexual response and experience

e) testosterone and libido

f) HRT preparations

g) dimensions of body features (height, limbs, hands, feet, teeth)

h) body odour (general lack of in CAIS?) with a tendency towards sweating from the head rather than the body.

One thing that everyone notices at our meetings is how one can dispense with all niceties and get down to the nitty gritty straight away, in stark contrast to how most affected women operate in their normal lives, even with women friends. Most of them feel they missed out completely on adolescence, and on 'girly' comparisons like this, because of feeling so stigmatized, marginalized and unusual.

By meeting others you gain a sense of belonging to a peer group at last and can share commonalities but, importantly, it also shows you that there is as much variety between XY women as between women in general and that not everything about yourself that you 're unhappy with is due to AIS …. or Swyers….. or whatever (the famous "AIS bucket" phenomenon).

I'd like to mention vaginal hypoplasia……

As with general support, the emotional needs of women coping with vaginal hypoplasia have been sadly neglected by the medical profession and this is where a multi-disciplinary approach is so important.

A common complaint by adult women is that doctors will certainly talk about infertility, will probably pluck unsubstantiated reassurances out of the air about gender identity, may talk about gonads and chromosomes; but the one thing they never discuss in any detail is the patient's fitness for sex and relationships, topics that are at the forefront of her mind. The group can provide help in the emotional, "you're-not-the-only-one" type of support but the psycho-sexual aspect needs specialist input, although we do have psycho-sexual therapists who attend our meetings.

How do you tell your relatives, partners and friends about your condition…..?

This is a major issue for XY women. Preparation seems to be all important. By the time the affected person comes to tell others she should have reached some resolution of her own feelings by having talked at length with other affected women, counsellors, psychotherapists etc., and should have had a chance to rehearse what she might say when facing those with whom she is emotionally involved.

The worst situation is for the woman to be using her revelation as a primary means of resolving her own conflicts. If the teller is not used to talking about her condition the exchange is likely to be fraught with complexities, with the listener having to cope with the woman's probable distress as well as having to deal with his or her own reaction, with the teller then getting mixed signals reflected back in a 'hall of mirrors' scenario. If, on the other hand, the woman herself is comfortable with her situation and can spill the beans in a confident, almost light-hearted manner, then the listener is far more likely to have a positive reaction, which in turn helps the 'bean-spiller'.

The timing of this is very problematic. If it's a potential partner, do you tell them on the first date on the principle that if they can't cope with it up-front, then there's no future in the relationship? Do you tell when things get serious and sex is involved (particularly relevant in the case of vaginal hypoplasia or a larger than average clitoris)? Do you wait until the relationship seems likely to be long-term and issues of fertility come into play? Telling a partner early, risks jeopardising the relationship. Telling a partner late, risks accusations of lack of trust.

How much should one divulge; just the infertility, or the whole 'caboodle' including the testes and XY chromosomes? How does the average androgen-sensitive 'man-in-the-street' process the notion of 'an XY woman with testes'? Whose needs are being served by a decision to tell? Does the other person have a right to know or is telling only advisable if it causes the affected woman herself pain to keep secrets from a loved one? It presents many dilemmas that women need to have explored beforehand.

The same principle applies to parents who have the task of revealing the truth to their daughter. They really owe it to the listener to have sorted out their own feelings, conflicts etc. as much as possible long before they embark on the telling.

Parents

So how well do parents cope…….?

Two adults offered an analysis based on their observations of young women who had attended all the support group meetings to-date. The worst outcome appeared to be where there had been a long-term awareness in the family of 'a problem' (and possibly a diagnosis) but with secrecy and/or a lack of openness and discussion about it, or where there had been childhood hernias with mysterious unexplained operations, and/or a discovery of vaginal hypoplasia. The best scenario appeared to be a) where the first hint of a problem was the failure to menstruate in teenage years and b) where there was no severe vaginal hypoplasia.

Paradoxically the first situation gives the parents the most time to come to terms with things and plan how to help their daughter in an open and progressive way, and yet this so often doesn't happen. The second scenario is 'a-bolt-out-of-the-blue,' but since parents and teenager are learning the facts together there is less chance of an atmosphere of secrecy and shame developing; and of course the parents have already seen that their daughter has not grown up to be a freak, even if that's how she sees herself.

We want to encourage more professional psychological help for parents…….

Parents of diagnosed intersex children can gain the same benefits from the support group as the affected girls/women but they are more dependent on medical professionals, at time of diagnosis, to set them on the path that will ultimately benefit their child the most. Parents of youngsters need a lot of help themselves before they can really understand and help their children through the learning/ adapting process.

We feel that the professional help must involve more teamwork…….

In order for parents (and patients) to play a greater role in decision-making there needs to be a shift in responsibility in the doctor/parent relationship, with parents and patients doing more thinking for themselves and not taking on board "hook, line and sinker" everything the doctor tells them. And doctors in turn need to relinquish some of their control over the situation and delegate some responsibility to their clinical psychology colleagues (funding of services permitting).

Doctors need to provide more straightforward and truthful information on the biological/diagnostic matters, in what is, after all, an area where there are established, objective facts. In parallel with this, they need stop feeling they have to issue dogmatic pronouncements and reassurances, as if from on high, concerning the more nebulous issues of gender identity and sexual orientation, and arrange for counsellors or psychotherapists to help people explore these -- and the many other psychological issues -- for themselves.

We want to encourage parents to widen their horizons and adopt an enquiring approach…

…to be willing to learn…….. There are enormous benefits to be gained by parents and patients, in dealing with any unusual condition, from meeting other affected people, expanding their horizons and appreciating the wide variety of (often positive) responses to what one might have seen as a death sentence. One family who attended a group meeting with their 9 year-old AIS daughter described how their reaction, when told of their daughter's XY chromosomes, was "Wow - how interesting! She's really special! Let's see what we can find out about this" and a 30 year-old with AIS said that she felt like some kind of angel when she found out the truth of her condition (quite a common reaction).

It is vital that parents should meet affected adults and observe reality rather than living with their imaginations and fears. Parents need to 'open the box', take everything out, have a really good look at it, and maybe repack it in a different configuration; so that they are neither swept along by clinicians' exhortations about how "normal" and "female" their daughter is, or will be, nor by their own irrational fears of unusual sexual development and 'how terribly it could all work out'. They need to steer a middle path, via information, discussion and analysis, not rhetoric and imaginings.

We don't want to concentrate only on negative experiences, but we feel it is vital that today's parents and doctors should also hear about the bad experiences of adults who have grown up with conditions like AIS, and know what the adults are discussing, so that they learn about the issues that will be occupying their daughter's mind as she reaches maturity, and so that history doesn't repeat itself. We want to try and provide a balanced offering of support, information and rocket fuel, but we do feel they should be prepared to consider some tough social, ethical and philosophical questions, even if the impact on their own situation is indirect.

Many parents may find the recent psycho-social discourses on intersex (Kessler, Dreger etc.) difficult to handle, but we believe our role is not to 'cotton-wool' parents but to provide information and encourage openness and enquiry. If parents read, and think, and talk (within the family, and with counsellors and other parents/ patients) about these matters as much as possible - almost until they are saturated to the point of tedium - they will then get a sense of what all the angles and the outermost reaches of current discussion/knowledge are. Then, the less threatening the demons will become, the fewer murky, menacing corners there will be, and the better they will be equipped a) to put their own situation in perspective and b) to actually manage the situation in their child's best interests.

We have been quite surprised, in our interactions with paediatric clinicians to find that many do not even seem to be aware of the recent discourses on the psychosocial aspects of intersex. We feel that specialists who are making irreversible decisions (sometimes involving surgery) affecting how youngsters will function as social and sexual beings really owe it to their patients to be conversant with these issues. And how can they encourage parents to read around the subject if they haven't done so themselves?

What problems do we see with the way some parents handle things……?

Firstly, I must say two things:

1) that there are many excellent parents who cope well with their intersexed child, and those who've made the effort to be here today are almost certainly in this category……but there are significant problems in some cases, and, secondly…..

2) we don't get much active involvement in the group from parents of young children. Although a significant proportion of the UK group's subscribers are parents (44% in 1999/ 2000), most of our meeting attendees are adult women with AIS and similar conditions. Virtually all the glowing 'fan letters' sent to the support group, saying how useful our literature/ meetings have been, how it has changed their lives, etc., are from adults with the condition - not from parents of young children. Nearly all the personal stories submitted to our web site are from affected adults rather than parents.

So all this is my view of the situation….. as someone who will never be a parent… so it may be overly hard on parents in general.

With that proviso, what are the problems with some parents……..

The parents of an infant/child newly diagnosed with an intersex condition have a very steep learning curve ahead of them. They need to grasp some quite complex genetic and embryological concepts, possibly with no prior education in biological subjects. There is a huge tendency for them to be overwhelmed, and to shut off and retreat into the safe territory of a) an overemphasis on the 'normality' of their child (including the so-called "heterosexual imperative"), and b) the comforting notion of "our little girl". The 'mirage of normality' and the resulting secrecy become more important to some parents than acknowledging their child's need for emotional support and full medical care.

Some parents' difficulty in handling this condition must be partly because they find it difficult to consider their child as a future adult who will need to function emotionally and sexually. So they continue to try and 'protect' them from the pain of knowing about the condition. But this 'denial' only hinders their youngster's healthy development.

Guilt, denial and taboo…..

There is often a problem with maternal guilt/denial, with some parents projecting AIS as only a fertility problem; a notion often inherited from the clinician/s. There is commonly a fear of genetic and intersex aspects of the condition. It seems that mothers are particularly fearful of these matters and it is an unnecessary but perhaps understandable guilt that no doubt plays a large part in this, once they learn of the X-linked recessive nature of inheritance in AIS. Many fathers seem to handle things more objectively.

Strange notions and 'fixing' things…

Some parents develop very strange notions about their youngsters' condition/treatment and doctors should not underestimate the level of medical misunderstanding in parents. One mother in the support group believed that her CAIS daughter might develop a hairy chest at puberty and understood vaginoplasty surgery to be the insertion of a plastic tube to serve as a vagina. Another mother would not be swayed from the belief that her own brother had the complete form of AIS ("It's very rare, but….." she would say).

There is a natural desire amongst many parents to want to 'fix' things for the future. There is general and pressing anxiety in parents of young children, even infants, over "what will happen at puberty". We usually recommend that having asked a few relevant questions of their medical specialists they don't over-concern themselves with this and devote more energy to reading about and understanding the psychosocial aspects.

The mother of a PAIS infant assigned as a girl had a piece of her own ovary frozen for possible future use by her child. Members of an AIS adults' email discussion circle couldn't agree on whether this was a caring self-sacrifice or an overanxious and unnecessary attempt to further 'normalize' the infant's life experience (the child had already had extensive genital reconstruction surgery). Interestingly, the mother declined our offer of a newly published intersex issue of the J. Clin. Ethics which would have brought her right up to date on the very latest insights, from both affected adults and psychologists/doctors, on the psychosocial aspects of intersex treatment.

Parental control/censorship….

There is a significant problem with some mothers making it into their problem, thinking they can handle the whole situation without outside help (from counsellors, from the support group). Some mothers seem focussed on a relentless quest to turn themselves into AIS experts, seemingly without intention of ever sharing the information…. with AIS daughters in their late teens who still don't know the truth. They keep requesting information on AIS, and on truth disclosure, and yet seem embarked on a long-term academic exercise to try and justify not talking about things, appearing to have no intention of ever giving their daughter her autonomy and allowing her to deal with it herself like an adult.

Some mothers are very controlling, seeking to influence who knows what, and who says what about AIS within the family. A number of support group members have described how they had plans to hold a family meeting, to fully educate their parents and close relatives about their AIS, and to give them literature, but this had been expressly forbidden by their mothers.

Keeping it in the family…..

Some parents, like many clinicians, need to stop believing they can handle everything without outside help and that they hold all the answers.

Parents, on the whole, seem to prefer to deal with things within the family. We perceive that while many parents are happy to receive newsletters, some may be too ashamed to attend meetings and confront the fact... and admit to others... that they have an intersexed child? It is our impression that more parents of young children used to attend meetings in the early days when they were smaller and more informal but now that the adults have become stronger and more confident, maybe this has deterred the parents from attending because they feel intimidated (even though we provide a private parents' discussion group on the second day of our weekend meetings). Maybe this is a failing of our group, but no parents of young children have answered our calls for them to get involved and to help plan and run our services.

Only three out of 35 parents with known email addresses even acknowledged an invitation in 2000 to join a parents' private email discussion circle we were offering to set up for them. Meanwhile the affected adults are all networking like crazy. Has the internet revolution passed parents by? It is very important that clinicians should make parents aware that affected adults are every day discussing every angle and nuance of being intersexed (in meetings, in newsletters, by private email....and in online discussion groups and chatrooms tailored to every possible 'flavour' of intersex, i.e. male, female, intergendered/ androgynous etc.) and that sections of society are becoming much more open and interactive on this subject.

The affected adults gain enormous benefit from their association with the support group, and by bonding and networking with others, but we have a problem on the whole in getting parents of young children involved, and this is where we need the help of the medical profession, specifically clinical psychologists, to try and help parents at the point of diagnosis to realise the benefits of expanding their field of view beyond the family.

An overseas family has done one better and have actually been bringing their PAIS daughter with them to our UK meetings since she was 9 years old. There, the youngster herself, who speaks English, hears adult women talking freely about all the things that many parents might consider taboo. So she, like the adults at the meeting, sees how these can become just topics of normal dialogue. She may see some of the women cry but she also hears them laughing uncontrollably over dinner, and can take part in the hilarity of the late night merkin contest…. and if anyone doesn't know what a merkin is, I can recommend a support group for people who've had this information withheld from them.

How have we interacted with the world at large….?

An important part of our work comes under the general heading of advocacy and awareness-raising. This has taken the form of:

1. Talks given by group members

2. Articles and books

3. TV and radio broadcasts

4. Projects undertaken with sister organisations

5. Campaigns against what we see as undesireable moves.

Time does not allow detailed coverage of the many such initiatives carried out by our members but I'll mention a few key achievements……

Two early events……

BMJ 'Once a Dark Secret'…….

The first occasion on which the concerns of an AIS patient were heard in the medical literature was probably the anonymous article called Once a Dark Secret in the British Medical Journal (Feb 1994) in which a young woman (not actually by a group member as far as we know) talked about the secrecy that had surrounded her condition. This prompted two response letters in the April 1994 issue of the journal, one of which gave the support group's contact details.

BBC's 'Dark Secret'…..

In Aug 1996 the BBC screened a documentary programme called XY Women (part of a series called Dark Secrets) made with input from the support group. A BBC helpline number was given and enquirers were sent a factsheet on the series, compiled by the BBC and giving our group's contact details. Many affected women have said that this programme enabled them to achieve a major breakthrough in their lives, by enabling them to understand their own condition for the first time and by providing a means of opening up the subject for discussion with family members.

One of the most entertaining of our public education initiatives……

Greer……

One of the most entertaining of our public education initiatives was a free and frank exchange of views we had with Ms. Germaine Greer. This concerned the unsympathetic, badly researched and inaccurate treatment of AIS in her book The Whole Woman published in 1999. Her basic argument was that people with AIS had no right to be considered as women.

This prompted letters to Ms Greer from group members and from medical professionals associated with the group. Ms. Greer responded to some of these, trying to shore up her position and expressing exasperation at being hounded (and, much to our delight, referring to the exchanges as a 'furore'). One of our group members, lucky enough to be endowed with pubic hair, challenged Ms. Greer to stand with her naked on a roundabout in Bootle (why Bootle?) and challenge passing motorists to spot the difference. Dr. Cathy Minto stood up at a public meeting held to publicise the book and told Greer that, by her arguments, until she had undergone a karyotype test herself she had no right to call herself a woman.

In Spring 2000, the paperback edition of Greer's book was published, with a few factual changes in the relevant chapter (apparently quite an unusual event in the publishing world), but her 'take-home message' unfortunately remained much the same.

Two recent successes……

'Holby City' and 'Doctors'…..

On 23 Oct 2001 the UK hospital drama series 'Holby City' featured a small girl with AIS and her father's difficulty in accepting the information. The daytime TV series 'Doctors' also featured AIS around that time.

S. Times 'Gender Puzzle'…..

A group member was featured in an article, The Gender Puzzle, by Christine Toomey in the UK Sunday Times Magazine, 28 Oct 2001.

These two items resulted in a 54% increase in hits on our web site during Nov '01.

Apart from many serious publications/films/events, group members have been involved in articles in various newspapers, popular magazines, including Good Housekeeping and Cosmopolitan. Some have been atrocious, like the Daily Mail article titled The Boy Sentenced to Live inside a Schoolgirl's Body others have been sensitively done. Speculation in the gutter press, about whether Wallis Simpson (Duchess of Windsor) had AIS, was rife with stupid headlines, inaccurate information and hurtful accusations. We complained about the coverage of AIS in an episode of the hospital drama ER and about the US professor of genetics who chose not to tell a Mexican AIS woman the truth yet recounted her story for the entertainment of readers of Discovery magazine under the title of The Curse of the Garcias.

AIS has even featured in two novels - one by a retired paediatric radiologist in the US (about a PAIS woman who resolved her conflicts by taking part in a boxing match) who took offence when we pointed out that our UK women members might not warm to his title of A Better Man than I (even if it was taken from Rudyard Kipling!)…..and a rather well received novel in German called Die Luftgangerin or The Airwalker.

End Quotes

A PAIS woman in her late 20s wrote:

I didn't understand the entirety of my diagnosis until I was 27 years old (just three years ago). Until that point, I lived, or rather now I think half-lived, in a self-imposed insulation from the rest of the world. I was miserable, not understanding who or what I was, just that I was different from the whole of humanity and in mortal terror that anyone would ever find out. I deftly avoided intimate contact and kept even my closest friends at a cold and bitter distance. I was unable to talk about it with my family, I avoided doctors for over a decade. I lived a rather successful life, on the surface, but no one knew how incredibly alone or broken I felt inside.

It was only when I found the AISSG website that I understood my full diagnosis and found a way to deal with it. That came mostly from finding out that I was not alone in the universe - that there were other people who were just like me, who had been subjected to the same shame about who they were and the fear about the implications of all of it. I went to my first annual [US] meeting just six short days after finding the site (I literally dropped everything when I found out about the meeting) and it was an experience that changed my life completely. I was overloaded that weekend by the things I learned, the people I met. It was like walking out of Plato's cave into a bigger and much much better and brighter world. Anyone who knew the "before and after" me has been amazed by the change.

I never had the clitoral recession surgery myself, although I certainly would be a candidate for one.... I don't know if I just had enlightened doctors who saw no need to 'normalize' me or what, but it was an un-subject and never discussed at all.

I was/am a pretty traumatized kid over the whole AIS thing, especially the enlarged clitoris, which I never spoke of to anyone…..The idea of someone seeing me naked, someone seeing that 'thing' mortified me to a degree I still haven't conquered. I shut off the entire idea of relationships and sex for this lifetime because I didn't think I would ever find someone who could understand or accept it, not that I would have thought about giving anyone half a chance to come to any understanding or acceptance.

Now, as I climb toward that mystical age 30 mark, I feel like I'm finally getting my life into some kind of order and coming to believe in the fact that I can have a normal, happy life. Since finding the support group and the [AIS email discussion] circle, I'm a lot happier with my lot in life and realize that I'm glad I didn't risk the loss of sensitivity through the surgery. I realize now that it is not impossible to find someone who would understand and love me for me, and who would not worry, to the extent that I do, about the size of my clitoris. It bothers me a lot that I can't be totally sure whether B.C. (Before Contact) [with the group] I would have gotten the surgery, but with the realizations I've come to since then, I'm glad that I didn't do it. More than anything, I want to make sure that someone who does it has had the chance for those realizations that came to me relatively late in life.

A woman in her mid-30s, who found out about her CAIS in a medical library, wrote:

Issue No. 1 of ALIAS is very near and dear to my heart. When I received it in early 1995 I couldn't believe how great it was, and I used a yellow highlighter to indicate the sections with which I especially identified. I then re-read it using a pink highlighter. Needless to say, almost the entire newsletter became peach colored! And when I read that the first support group meeting would be in two weeks time, I was booked on a flight to England within the hour. Arriving at Heathrow airport and being met by the support group contact - well, I hope everyone in their lifetime experiences such a wonderful miracle. If I'd had a choice between winning $10 million in the lottery or finding the letter [from another AIS woman] in the British Medical Journal listing the phone number for the support group, there is no doubt which I'd choose. And it would not even have been a matter of contemplating having $10 million to spend - I would have chosen the BMJ letter without blinking an eye. Nothing has, or probably ever will have, such a profound influence on my life as that letter and that newsletter.

The image of being painted into a corner was vivid in my mind since the age of 12 or 13. It haunted me until age 36. I never saw any way out of the corner except by taking my life, until I came across the letter. The letter wasn't just a release from a corner, it was a release from the prison that was my mind, a place where everything was locked shut inside and could find no freedom of expression. And when I read the description, in ALIAS No. 1, of "....the process of hearing oneself actually saying out loud those words that you thought would forever remain as circling thoughts in your head", I convulsed with sobbing (the word convulsing is not an exaggeration; I had never cried from so deep a place, or as intensely as when I read that quote). Nothing I ever read so brilliantly depicted how I felt about my life experience and the ordeal of keeping it all locked inside my mind.

Meeting other women with AIS, finding them to be normal makes it easier to view yourself this way, I think this is what caused me to make great strides in coming to terms with AIS. When I started going to meetings in the UK, I would literally look around the room and think to myself "This is a group of great women about whom I don't feel the least discomfort that they have XY chromosomes or once had testes." By being able to find this so utterly acceptable in them, I came to be much more accepting of myself. It's like the other group members are a mirror of ourselves and when we like what we see in the mirror it becomes easier to appreciate ourselves and to understand how others could find AIS acceptable in us.

Additional Quotes

Benefits of meeting others……

A PAIS 44 year-old wrote:

Prior to meeting AIS women, I had this impression that there were aspects of my physical looks, or a vibe I might put out that would make people think I was not a woman. Baggage. I'm overly sensitive to it, and it remains an issue.... And I remember regularly probing my face in the mirror from age 14 to 20-something, to see what was different. Was there something in my face that gave me away, that was subtle to me, but more obvious to those who looked at me - especially women, since they'd be the first to know, I thought. Today I don't think so. It has been a big change since the day I first asked ____ [CAIS 39 year-old], at the NYC group meeting in Sept 96, "Can you tell by looking at me?" I had wanted to ask someone that question for three decades. I've been in solitary confinement for all that time. Yep, I got parolled last year. My only visitor was my mother. Kidding aside, in some ways I view my current life as 'restarting' [last year] in Sept 96. I was 14 when I was given 'the story' by the doctor. Maybe there is a part of me that is only 15 years old inside today.

Communication failure in medical consultations……

A CAIS 37 year-old wrote:

I hate going to the doctor and getting blank stares when I tell them I have AIS, even when I spell it out - 'androgen insens....' And even when I revert to 'testicular feminization' they don't have the correct details for the correct syndrome. A senior resident I saw today (________ is a teaching hospital) thought I'd had a uterus and a dual set of gonads - ovaries and testes. When the head of the department (one of the top urogynecology experts) came in he didn't recognise 'androgen insensitivity' either but knew much more about the medical details when I said 'testicular feminization'. "Good lord, how long has the name been changed?" he said. I hate the feeling that a bunch of doctors are going home tonight to drag out the textbooks, and with young doctors I hate the slightly shocked look when they finally do understand that it's an intersex condition.

Sometimes I am proud of how much I have learned about AIS in the year since I discovered the truth and I am glad to show off my knowledge and my ability to talk about such an upsetting subject, but there are times when I really don't want to know more about this than my doctors. It didn't bother me to have to educate my family doctor, but these guys are supposed to be on top of things. They were nice guys, kind, respectful, considerate, but I was still quite upset.

One good thing. The senior guy asked me why this information is kept from patients and I explained that the medical community has believed that we are incapable of handling the testes/karyotype information. The room was full of male doctors and he said "Well, we all have Y chromosomes and they work quite well for us." Well, I had a large laugh at that. I told them that Y chromosomes don't work so well when you have AIS, have been raised as a female, and quite want to stay that way.

I now find it useful to make sure that a new specialist knows ahead of time that I have AIS, before I come in. When I have to see a new one, I call ahead and ask to speak to the nurse when I make the appointment. I tell her I have AIS and say it used to be called testicular feminization but patients find that term very offensive. I make the nurse or receptionist take a very detailed message about my having AIS and ask if the doctor can call me back to confirm if he or she has ever had an AIS patient before. It prepares them (the nurse has no clue what I'm talking about but the message seems to get passed on clearly) and also warns the doctor in advance of my preference in terminology. I usually get a call back and it gets the awkward moment of recognition out of the way on the phone - where I can't see the slack-jawed, bug-eyed, dumb-ass look that comes over most of them, until they finally connect 'AIS' with the old term, and with testes, XY chromosomes, etc. Residents are especially good at this facial expression :-)

Rights of carriers…….

A CAIS 49 year-old wrote:

Today my niece - the daughter of my non-AIS sister (my other sister and I have AIS) - announced she is "with child". She is 3.5 months pregnant. This should be great news to me yet my blood turned cold because my non-AIS sister could be a carrier.... I only found out about carriers last year when I got more info about AIS when I joined the group.

My non-AIS sister had a carrier test a year ago but still has had no result. We will chase tomorrow but lack of funding makes these delays happen. The big problem is.... if she is a carrier, my niece could also be a carrier and the baby could be AIS. Is this right do you know? I am so worried. My niece had said she did not ever intend to have a baby. We had agreed not to tell her [about AIS] until we got the results of the carrier test but now it's too late.

Both my sisters have the denial factor - won't discuss AIS. My non-AIS sister has said I must not tell my niece now. She says - and she has a good point - that the stress involved could upset my niece and so damage the baby. She says that she may not be a carrier. Also that the baby could be a boy, or OK [XX non-carrier female] anyway.

Sorry ...this is a tricky one to follow but I could really do with some advice here. It is an ethical dilemma. And a no-win situation. After the last group meeting I was all set to tell my niece about my condition too... What do you think I should do?


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