|The AIS Support Group Australia recognises the difficulties faced by parents of individuals with AIS and other intersex conditions.
Often, these difficulties and stresses can flow onto other family members, such as brothers and sisters, grandparents, aunts and uncles as well.
In recognition of this, we have an Parent's Liaison Officer who is a member of the AISSGA committee. Please contact us to be put in touch.
Here is an article written by our previous Parent Representative:
Shame, guilt, disappointment, embarrassment, confusion, isolation, fear! Which of these emotions did you experience when your child was diagnosed as AIS, PAIS, CAIS, of indeterminate sex, Testicular Feminisation, Intersex or any other title given to your child's condition? I experienced them all over a period of 30 years since my child was born. Like you, I had no support, counselling or understanding by the broader community.
What could I tell my parents, family, friends? If only I had the wisdom and enlightenment that I believe I have now. Now I am able to say, What does it all matter?? After all, first and foremost, like in every other aspect of life, is our children's happiness. Throughout their lives, we make decisions on their behalf, on what is best for them. In their formative years we decide their religion, their education, what they should eat and wear etc. We make these decisions based on advice, opinions of experts, so-called experts, friends and our own life experiences. We are not infallible. We make mistakes in some or all of these areas. Why should we expect that we will not make a mistake when it comes to gender assignment. After all, we were guided by what we thought were the experts.
When my daughter was in her teens and being a typical, difficult teenager, I spoke to a variety of people including a spiritualist. I have got to be the world's greatest sceptic and tend to "pooh pooh" anything which can't be explained scientifically, but she gave me some simple but excellent advice. Advice which seems so obvious now but was a gem that I have tried to treasure and embrace since then. She told me never to close the door on my children. Four simple words that I hope will always allow me to be there for them no matter what. My daughter and I are very different people. We don't think the same, we don't live the same, we don't dress the same, we don't even eat the same. We have had many differences of opinion but I hope that she knows that I am always there for her in times of need and that I support anything she does in life that satisfies and fulfils her needs (providing it is legal and doesn't harm anyone else).
Finally, we have to remember that we brought these children into the world - they had no choice in that - therefore we have an ongoing responsibility to them. If our children were born blind, deaf, with a hole-in-the heart or any other condition, we would do everything we could to ensure them the best quality of life and happiness possible. How is their gender condition any different?
Fostering meaningful dialogue between parents and children with AIS
Talking with Early to Mid Children (up until 10)
Based on largely adoption literature, which, if we follow that there is correlation between how adoption and intersex could be similarly considered a ‘difficult’ subject to broach with children, suggests parents should talk about intersex with their children from the time they are young. Conversations need to be honest and developmental appropriate. Talking often and openly about the topic will show parents are willing to talk when the child wants to.
(Note, in this presentation, the focus is on how parents can manage communication, as children and teenagers fundamentally lack the skill to do so).
Parents: Use the terms regularly, and from an early age. This is about learning the language. This could be “AIS” or “intersex”. The word(s) shouldn't become your primary focus, but say it when it feels natural. This way "AIS" never becomes taboo.
Share stories. In adoption literature, there are kids books about adoption, such as The Day We Met You, by Phoebe Koehler, from which parallels could be drawn. Or weave your own tale. Have you heard the story about the kangaroo that didn’t have a pouch? Katy No Pocket is a book by Emmy Pane. Children might not yet grasp the fact that she or he has AIS or an intersex condition but the story helps to introduce her or him to the concept.
Take cues from your child. If she asks, "Will I grow a baby in my tummy?" explain pregnancy and birth in the context of her own experience. Say, "Some girls have babies - and some girls have AIS" or “A baby won’t grow in your tummy but you can still be a mummy!” As the child grows you could furnish more details. “Inside your body, you have testes instead of ovaries and a uterus.” Cognitively, young children’s capacity to understand things in different ways is rapidly growing, which leads to a desire to have new questions answered. If your child doesn't express much interest in her AIS, don't dwell on it. You can be sure at some point she'll need to learn more. Once a 5-year-old becomes fascinated with the human life cycle, she'll want to know everything.
If you’re talking about AIS with your young child and get the question “Am I a boy or girl?” try to avoid answering one way or another for your child... instead, why not ask “How do you feel?” It’s fairly natural for young children to question their gender in a fairly basic way. You may get a response that they feel ‘a bit of both’. Allow children to experiment with their feelings around their gender - they will find their own way with time.
Which brings us to our next point: Be patient. While your child might acknowledge that she has AIS, she won't really know what that means until she understands menstruation and pregnancy or perhaps more fundamentally the difference between boys and girls. So don't become frustrated if your child doesn't seem to "get it". It's perfectly natural for her to ask questions - sometimes even the same ones over and over again.
Who Else Should Know?
DOCTORS: Supply your paediatrician with information sheets if necessary. Many GPs would only have a vague understanding of the condition. Also let him or her know about the health concerns associated with the condition. Other specialists, such as endocrinologists, should be expected to understand conditions such as AIS. The AISSGA has downloadable PDF info pamphletes on the website.
TEACHERS: Tell them on a need-to-know basis.
FRIENDS AND FAMILY: Share the full story with them only after your child knows it and is comfortable for the information to be shared. Or why not let the child decide who share the info with for him or herself?
STRANGERS / ACQUAINTANCES: It could be, for whatever reason, that a stranger or someone you don’t know so well asks about your child and intersex. It's important for parents to recognize that they can be honest and open with their children about their background but that doesn't mean they have to be honest and open with everybody they meet.
Try saying, "We love to talk about our personal matters in our family, but we don't talk to strangers about that." Then redirect the conversation or simply say goodbye in a pleasant manner. If the child witnesses the exchange, give your child an opportunity to talk about the incident if he/she wants to. Seize the teachable moment, too: "Remember, we don't have to talk to strangers about personal matters."
• Emphasize their good health - children with AIS can still run, play and dance!
• Talk about other people who have the condition, their lives and achievements. Sometimes this can be relatives – sisters, aunts, etc. – or friends met during conferences such as these! Knowing there are ‘others’ will reinforce the idea they are not alone nor destined to a life not worth living! Some well known / famous people with AIS include: Caster Semenya (Olympic athlete), Tony Briffa (mayor of Hobsons Eden Atwood
Bay) and Eden Atwood (jazz singer).
• Encourage your child to discuss his or her emotions.
• Give him or her a journal in which to record his or her thoughts, or suggest that he or she write a hypothetical letter. For many children, simply putting the words to paper is therapeutic. Some children might benefit from drawing pictures about their intersex story.
• Wonder with her. Ask what she imagines what it might have been like to not have AIS and to have grown up a boy.
• Have fun with the moments your child presents to you. Expand on them, and explore them with enthusiasm.
• Expect him or her to come to terms with AIS immediately.
• Be afraid to choose a better time to discuss issues and to give your child your full attention. For example, say, "This is important to talk about. Let's wait until we get out of the bank and in the car."
• Worry about why your child is asking about intersex. Young children naturally wonder about how they came to be.
• Conflate ‘sex’ with ‘gender’. It might be less confusing to talk about your child’s body in terms of “male” “female” or “intersex”. This indicates something is boy-like or girl-like and avoids a child mixing up how their body with with whether they ‘feel’ like or are a boy or a girl.
• Fret about the words you choose to talk about reproductive issues ("tummy" vs. "uterus," for example). Use the words most comfortable to you and your family.
• If you don't know an answer, admit it. If you're giving your child your best guess, make this clear by using a phrase like "Probably" or "I think." Then, ask your child what he or she thinks.
Many kids surprise parents with emotional reactions at age 7 or 8, as this is the age when children begin to understand the difference between reality and fantasy, gain a greater capacity for logical thought, and start to see things from others' perspectives. This could trigger a whole new round of unusual behaviours and questions. Especially, the question “why?” Simple explanations for children under five will need to be fleshed out with all the details. There may be some work separating the fantasy from the reality. With enriched understandings of what it means to be intersex or different could lead children to experience a real sense of loss - as stated before, allow children to feel their emotions.
Most importantly, children with AIS need to know all about their bodies by the time puberty rolls around!
Talking with Adolescents (from about 11 to 20)
The teenage years are a time of identity formation. Teenagers with intersex may question who they are more deeply than their non-intersex peers. They may worry about issues such as intimacy and telling peers.
What parents can do: give the facts, provide full disclosure and all the information you can about AIS. Provide contacts with other intersex teens and young adults (ie. via the support group). Point out the positives as well as the negatives (see Imy’s YouTube video “5 best things about AIS”). Like with younger children, use ‘teachable moments’ to have natural discussions around AIS rather than forcing the issue. Many parents worry about giving negative information but when parents are not straightforward in sharing full information, teenagers often imagine something much worse than the truth.
It is important for teens to gain some independence but may fear leaving the security of the home and family – others may adapt by acting more mature or “tough”. Parents can gradually decrease parental control as their teens show signs of readiness, and allow them to have a voice in decisions.
Intimacy, as previously stated, can be a point of some anxiety for AIS teens, especially if they are also struggling with questions of sexual orientation. What can parents do?? Talk openly about sexuality with your teen and communicate your values on dating, sex and relationships. Educate about safe sex. Express compassion on their developing understanding and potential sense of loss over factors such as infertility. Clearly state your values on risky behaviour (alcohol, drugs, promiscuity, etc.). All teens do better in homes with consistent, clear boundaries and expectations and a nurturing and guiding atmosphere that allows them to incrementally develop and work through normal adolescent developmental stages.
In helping teens tell peers and friends about their AIS, parents can help to prepare their teen for these issues to arise (which no doubt they will!). Help teens anticipate potential question and practice how they could respond. Roleplay! Help teens to understand that personal information does not have to be shared with schoolmates and that he or she should decide in advance what and how much to tell. Also, it could happen, but your child may become the “spokesperson” for intersex in the classroom, which is only OK if that’s what he or she wants. Some intersex students (like Bonnie!) have taken great pride in researching many aspects of AIS and intersex, writing in-depth papers or making class presentations. At the same time, your teen should feel free to say “I don’t know about that” or “I’m not an AIS expert” when asked general questions about AIS or intersex.
It should be noted that siblings who are carriers can also have issues as they struggle to understand how they could pass a condition on, and all siblings even if they aren’t carriers may worry about how to support affected siblings or respond to peers who may be asking questions. Including these siblings in conversations around AIS (such as ‘how to tell peers about AIS’) will foster a shared sense of belonging, understanding and family.
Talking at Start of Adulthood (~18+)
All teenagers need time to gradually learn and practice adult life skills (eg. finding a job, doing laundry, etc.). This seems fairly obvious, but some teens with intersex may need extra time, attention and encouragement to learn adult tasks – they may not be ready for adult responsibilities at the same age as their peers. Help your child learn to be comfortable with his or her own situation and abilities. Teach and re-teach teens adult life skills (eg. Cooking, paying off the credit card, making appointments, etc.). Teens with AIS who have had surgery to remove their gonads may also need to have the importance of staying regular with their HRT impressed upon them.
Parents: when your kids with AIS go to move out of home, you can explain how you will help them move into adult life. This is pretty standard, but remember, young adults with intersex may need a bit more support. Teenagers need to know how long they can live at home and whether or not their parents will help them with their first apartment rental, pay for university expenses, etc or continue to accompany their teens to appointments with specialists. Base your support and expectations on your child’s abilities, level of emotional security, and history and not on their chronological age or what their peers are doing. Provide ongoing emotional and tangible support even after your young adult moves out of your home. Parents who visit frequently, assist with household management, help to fill out tax forms, and so on help young adults not feel too overwhelmed as they adjust to life away from the family.
Mental Health Concerns
Growing up with intersex involves some additional complications and challenges. Issues may come up episodically. The occasional session of a counsellor or therapist could be helpful. An intersex peer, mentor or support group can also be effective at addressing issues as they arise. Sometimes, for whatever reason, mental health conditions may arise. Professional help may be needed. Here are the warning signs.
Extreme moods or emotions. The teenager is:
• Angry, sad, or depressed much of the time
• Extremely fearful or anxious
• Withdrawn or apathetic
Risky or out of control behaviours, including:
• Self injury
• Harmful sexual activity
• Eating disorders
• For AIS, this could also include discontinuing HRT, which can have long term health impacts
Substance abuse. The teenager:
• Shows sudden and unexplained changes in physical appearance (such as red watery eyes, rapid change in weight)
• Experiences physical symptoms (changes in appetite, vomiting, tremors)
• Has unexplained changes in behaviour, mood, attitude, or personality traits
• Loses interest in hobbies or friends once enjoyed
• Shows unexplained changes in school performance
Anger management or relationship problems. The teenager:
• Shows extreme anger or aggression with peers
• Finds family interactions stressful
• Avoids family members and friends
• Has inappropriate peer relationships
• Has no friends (is a “loner”)
Articles & Resources
Dilemmas when gender is uncertain.
By O'Rourke, M. The Weekend Australian. March 19-20, 2005.
When the midwife passed Andrew and Megan O'Brien their new baby, they were thrilled to notice that he was a boy, even though an earlier ultrasound had foretold a girl.
Handbook for Parents.
Prepared by the Consortium on the Management of Disorders of Sex Development
An invaluable resource for understanding intersex, and how to talk to your child about intersex.
dsdfamilies is an on-line information and support resource for families with children, teens and young adults who have a DSD. The website provides a service: it brings together user-friendly information on the medical management and decision-making in DSD, with psychological support, and sensitive and practical peer support.
"Family Love" by Angel Shark, 2006. Creative Commons license.