Melbourne Royal Children's Hospital

17th & 18th November 2001.

The AIS Support Group Australia held a national conference/workshop and AGM in November 2001 at the Royal Children's Hospital Melbourne. This was the second national meeting for 2001, the first being held in Brisbane in May 2001.

Participants

The participants included:

- parents and siblings of people with AIS

- people with PAIS and CAIS (the youngest was 17, the oldest 70)

- people who self-identify and live as male or female or intersex

- various clinicians, including two counsellors, two genetic counsellors and two gynaecologists

Introduction/Opening

The meeting was opened by Tony Briffa (the President of the AIS Support Group Australia) who spoke of the busy past few months, particularly with the media and such things as affiliations with other groups. Affiliation with the Genetic Support Network of Victoria has resulted in the AISSGA receiving a grant to go towards printing an up to date colour information brochure. Tony then followed up with his personal experiences with living with AIS.

Personal Experiences/Stories

The next section of the meeting, which was continued the following morning, was a general invitation to those present to share their life stories and experiences living with AIS. It was made clear from the outset that those present were welcome to share as much or as little of their stories as they felt comfortable with.

As with the Brisbane meeting in May, stories included details of:

- the need for parents to learn of the support group as soon as a child is diagnosed as having AIS or a related intersex condition;

- general misconceptions/urban myths about AIS believed to be fact by some in the medical profession;

- difficulties with relationships (including sexual and intimacy issues);

- questions about what to tell partners and when;

- how much interest by partners is too much or too little?

- experiences with going to school and dealing with peers in childhood, adolescence and early childhood when you have AIS;

- feelings associated with not menstruating for girls with AIS;

- infertility;

- adoption;

- success of reconstructive surgeries;

- some doctors refusing to put people in contact with others with AIS, even when asked by older adolescents and parents;

- difficulties in making choices for children with AIS - especially when the 'big picture' isn't explained and doctors place some urgency on making a decision regarding gonadectomies;

- late discovery of the truth about AIS because of inaccurate or misleading information regarding the condition;

- the possible strain on the family and on the parent's relationship when dealing with a child with AIS or a similar condition;

- lack of knowledge or research on the timing of gonadectomies and the relationship it has with bone mineral density and body image;

- lack of knowledge or research on hormone therapies for people with AIS and similar conditions (both oestrogen and testosterone therapy);

- the poor manner in which some parents are treated when a newborn is diagnosed with AIS or similar condition;

- lack of knowledge by the medical profession in general on AIS and other intersex conditions;

- the feeling that members learn more about their condition from support group meetings rather than from their doctor;

- the expense of treatments like oestrogen, testosterone & Fosomax;

- the inability to obtain DHT for males with AIS; and

- a need for a booklet on PAIS.

One member spoke of the support group in terms of the one place she did not feel that she had a secret she had to keep from others. A parent spoke of the way her child's diagnosis was given to her in hospital and the fact that she was given absolutely no follow up support after being given the information. She spoke of her disagreement with the medical recommendations she was given, deciding to rely on her own parental instincts and an approach of openness with her child from an early age. This same parent, after repeated requests of specialists, only found the details of the support group after taking a length of time off work to specifically look for such a group on the internet.

Question & Answer Session with Clinicians

On Saturday afternoon, a general discussion was held with clinicians present for the meeting. As a starting point, positive aspects of treatment were discussed with the emerging common aspect of positive treatment being provision of accurate information at every step of the decision making process. It was generally felt that the best clinicians were those who took the time to thoroughly research the subject matter in order to give their patients all information necessary to make informed choices. One gynaecologist present asked for the general opinion of the group about disclosure to one of her patients. She had been instructed by senior medical staff not to disclose to the woman concerned, her diagnosis of AIS. The senior staff justified their position by stating that they believed the patient too old to tell the truth. Members of the support group all agreed that this was an old fashioned paternalistic attitude and that all it really meant was that the woman concerned would spend the rest of her life wondering why she was 'different' to other women. The genetic counsellors present spoke of the need for lines of communication to be opened up so that they were brought into dealing with the situation of a newly diagnosed infant much earlier. This is a particularly important message to get through to paediatric specialists.

Dr Sonia Grover, a gynaecologist and specialist clinician with a long-standing involvement with the support group, attended late Saturday afternoon for a short time. She attended again the following morning at the request of group members.

Sunday Morning Session With Dr Sonia Grover (Gynaecologist)

A further question and answer session was held Sunday morning with Sonia Grover. Discussion topics varied widely and included such things as:

- hormone therapy, including oestrogen, progesterone, testosterone, and DHT;

- various types of hormone therapy administration;

- bone mineral density issues;

- questions about any need to maintain non-surgical dilation when not in a relationship;

- the advantages of non surgical dilation against surgery (including the ability for women to successfully 'construct' or deepen their own vaginas);

- the need for effective hormone therapy to assist intercourse issues including the possible use of oestrogen cream where hormone administration is not effective by itself;

- whether a prostate gland would be present in those with 'low grade' AIS; and

- discounting a few 'urban myths' about hormone treatment as it relates to AIS.

As always, Dr Grover discussed all issues and answered all questions in an open, straightforward and direct manner and her contribution to the meeting was appreciated by all present. There were two men with AIS and the father of a woman with AIS present for the discussion with Dr Grover, all contributed to the discussion and had some of their own questions about hormone treatment answered as well.

Personal Experiences/Stories (continued)

Personal stories continued for a time, including discussion about some clinical 'bedside manner' problems (such as talking about patients who are in earshot in the third person and marking medical files with female in inverted commas for women with AIS).

Video session

A short video session followed during which 60 Minutes programmes about David Reimer (Twins/John/Joan case) and Tony Briffa were shown. The meeting then broke for lunch. Following lunch the videos 'Sex Unknown' and 'Gender Unknown' were shown. Following the videos, the last of the personal stories were shared and general comments invited about the meeting thus far.

AGM

The AIS Support Group Australia then held its 2002 AGM. Tony presented the President's report which included details of another highly successful year for the AIS Support Group Australia. He particularly highlighted:

- The increase in membership and public awareness over the last 12 months;

- The number of visitors to the AISSGA website has increased (even managing 2483 hits in a one week period in June and averaging around 550 per week);

- The website is now fairly established and easily found on search engines;

- Important relationships with medical professionals and hospitals have either been established or strengthened, with more clinicians contacting us and offering support;

- 'dAISy' (the AISSGA newsletter) has increased readership and is gaining new subscriptions as a result of its reputation;

- Representation on various government advisory groups established;

- Support, information and advocacy services being utilised by more members from all over the globe;

- Relationships with genetic service groups and counsellors have been strengthened; and

- The highly successful national meeting in Brisbane in May.

Tony flagged the following as future strategic goals of the AISSGA:

- Educating the general public about intersex conditions;

- Educating the medical profession about the issues relating to living with intersex conditions and the needs of affected people (including families);

- National AISSGA meetings in Brisbane next May, in Melbourne next November and possibly Adelaide in the second quarter of 2003;

- Publication of a general AISSGA brochure;

- Publication of a PAIS booklet which will be written by the AISSGA in collaboration with understanding and supportive Endocrinologists;

- Continuation of working with the Royal children's Hospital Melbourne with the Theme Research into the treatment of individuals and families with intersex conditions;

- Conducting a seminar in 2002 regarding the treatment of children with intersex conditions and the work of various intersex advocacy/support/information groups;

- Continuation and establishment of collaborative relationships with the medical community;

- Continuation of support for all the states in Australia and a definite effort to reach as many families as possible affected by intersex conditions; and

- Continuation of our vital support, information, advocacy and lobbying functions.

The Secretary & Medical Liaison Officer's reports were also read and adopted, followed by the election of officer bearers.

A discussion about affiliation with and representation by the Sex and Gender Education Association (SAGE) was held. A motion was passed that SAGE was not representative of the intersex community nor their views and therefore the AIS Support Group Australia opposed SAGE representation of intersex issues and would not affiliate. It was agreed that as with all organisations that were more representative of transgender than intersex issues, we would still work together on common issues. Tony explained that he works very closely with the transgender community and can relate with many of their issues personally, but fortunately most people with intersex conditions do not share issues relating to being raised in the incorrect gender and have no problems being accepted in their self-identified gender.

The Australian Law Reform Commission (ALRC) inquiry about safeguarding genetic information was then discussed. The AIS Support Group Australia has been invited to make a submission to the inquiry. It was agreed by all present that there were many issues for those with AIS should disclosure of genetic information become widespread amongst insurance and employer groups. It was agreed that a submission would be prepared by committee members on behalf of the AIS Support Group Australia. Following general business, the first life member of the AIS Support Group Australia was elected for her contribution to the support group.

Comments & Conclusions

The contributions the medical practitioners that attended were appreciated by all. This was particularly the case as two genetic counsellors who attended, travelled from interstate for the meeting and participated in both days of the meeting. One of the counsellors commented about how much the support group had grown in the last 12 months or so. Members of the support group enjoyed another excellent opportunity to discuss various ways of improving both the perception and treatment of intersex conditions. The variety of members present, either with AIS, their parents or clinicians, contributed to thorough discussion of a wide variety of issues. Feedback from all present was very positive and once again the inclusiveness of the support group was cause for favourable comment. Unfortunately many who had planned to attend did not do so because of recent world political events. The next meeting is to be held in Brisbane in mid 2002.