Questions & Answers
Advice from my mom to the other parents out there:
Reach out and listen, and make an informed and intelligent decision based on your heart.
The most important thing is to advocate for your child.
How and what do I say to my child to explain AIS?
Hard news is never easy to give, but as long as you tell the whole truth, and are loving, you won’t go wrong.
The best advice I can give is to just be honest.
I have something important to tell you. You have a genetic mutation where your body reads hormones a little differently. This means you were born without reproductive organs and won’t be able to have children. I love you so much and we can get through this together.
Depending on the type of AIS, you can explain their external appearance to them. Explain that nothing has changed, and they are still the same person, and that you love them.
When they’re young teenagers, you can explain that, depending on the type of AIS they have, they may need additional surgery, if they choose, for gender assignment or a gonadectomy. That if they have a vaginal canal, they can use dilators to elongate the canal. That their bodies are perfectly normal, just variations that happen based on the amount of hormone their bodies understand. When they have questions about their identities, please point them to the identity page.
Explain that the Y chromosome tells the body what hormones to produce, and the hormones determine the sex. The chromosomes don’t actually determine the sex. Explain that their bodies don’t understand testosterone, or understand testosterone a very little amount.
What about Hormone Replacement Therapy (HRT)?
When to start HRT?
HRT is started after a gonadectomy is performed (source). The median age at first prescription of HRT was 14 years (source).
How much & what hormones?
Oestrogen & Sometimes Testosterone. For how much, see source.
How long to be on HRT?
HRT is necessary for long term health. The risks of osteopenia and of regimen osteoporosis are higher, especially in patients with early gonadectomy. (source)
Who manages HRT?
An endocrinologist or an OBGYN will manage your child’s hormone replacement therapy.
Are there other parents I can connect with?
Androgen Insensitivity Syndrome is a very rare condition, so it is difficult to find patients with this syndrome, and even harder to find parents to connect with.
My best recommendation is to contact the following support groups and see if they have parents as part of their member base. I also recommend searching for Intersex, Disorders of Sexual Development (DSD), or Differences of Sexual Development (DSD) support groups. These groups may not all have people with AIS specifically, but we are all under the same umbrella of being in the sexual development spectrum.
How do I prepare my child for Biology Class and Sex Education at school?
Smile, nod, and just take the test.
If your child reads and understands the my body, talk nerdy to me, and the basics pages of this website, I promise they will know more about the complexities of human reproductive anatomy than their teachers.
My best recommendation – study whatever is in the book and repeat what it says in that book back on the test, even if it’s wrong. If the book says that XY chromosomes make you a man, put that on the test. It’s going to suck. Then, I highly recommend you both get ice cream after that test, have a good talk about it, and have a bonfire and burn the offending notes.
There is a time in all of our lives when we must decide to advocate for ourselves, and when you are 15 and just trying to fit in may not be the best time to stand up to the system just yet.
College Biology, on the other hand, is the perfect time to answer those questions correctly, and then take that test up to the dean and board of regents and protest.
How do I prepare my child for dealing with their peers at school?
I spoke with my therapist on this exact topic the other day. She commented on how it must have been hard in school for me to have not been my authentic self – I reminded her that I didn’t have time to be my authentic self; it was just about survival.
Tip 1: To Tell or Not To Tell
Should your child confide in their friends that they don’t have a period? That is an incredibly personal choice for your child to make and it completely depends on your child, their school, the trustworthiness of their friends, and the LGBTQ+ acceptance at their school. I grew up in a small town, and was unpopular, so under no circumstances was it advisable for me to reveal that I did not have my period, let alone that I had AIS.
Tip 2: Avoiding Shame and Jealousy
If your child identifies as a girl, and has girlfriends (friends who are girls), there will be lots of talk of periods. Cramps this, and blood that. It’s incredible traumatic for someone who does not have a uterus to have to deal with day in and day out, especially if she has eagle eyed friends who think mapping out everyone’s cycles to see who the alpha is is fun (not kidding, this happened to me). If your child laments about not having a period, or needs a good alibi for her bitchy friends, she can follow the full moon and eat red velvet cake every full moon just so she can participate with her friends.
Tip 3: Just Carry Extra Tampons
Explain to your child how tampons work, and buy a box of the good ones (plastic / regular flow) just so she can keep extras in her purse. Don’t buy the cheap stuff – this is a status symbol. It’s not for her, it’s for those girls she goes to school with who are always asking her for tampons.
Tip 4: Start Dilation Before She’s ready to have Sex
I’m specifically speaking to CAIS / PAIS who are phenotypically female. I know it’s hard to imagine your little baby growing up, but having sex when you have AIS takes planning and work. It can be extremely traumatic, and if not planned for, & can seriously injure your child if jumped into without planning. For more details, please head over to the love section and speak to your LGBTQ+ OBGYN about a set of dialators.
Is this terminal? Is there a tumor or cancer?
No, it is not terminal. You can breathe; your child will live a long and happy life.
Look, the gonads do have a likelihood of developing a tumor as your child gets older. That doesn’t mean they are cancerous today, or will be tomorrow. You need to let your child have all of the information and have them make an informed decision about their body. Current thinking is that if they decide to have a gonadectomy, to do it after puberty. Your child can also opt to monitor their gonads with bi-annual screenings with an ultrasound or an MRI for any changes.
Is AIS inherited?
It is.
“AIS is inherited in an X-linked manner.”(source). This means that the genetic mutation can be passed down through the maternal line. To learn more about how genetic inheritance works, read talk nerdy to me.
Do I now have a daughter or a son?
Finding out your child has AIS has changed nothing about your child and your relationship with them.
You have a wonderful child who is whatever they identify as. If the concept of gender expression and identity is new to you, think of it this way. Did you have a conscious moment in your life where you decided to be a boy or a girl? Did you decide to be gay or straight? No, you just knew what you were. Your child will know as well. Just because the biology is a little more complicated doesn’t mean that your child looses the right to express their own identities.
For example: I have AIS. I was assigned female at birth, raised female, and when I was old enough for it to matter, I identified as female, and am attracted to men.
You could just as realistically have a child who was raised female and assigned female at birth who as a teenager identifies as male and is attracted to females.
Our bodies make life a little more complicated, but it doesn’t have to make loving us any more complicated.
Should we have the surgery right away?
Surgery is often permanent. My suggestion is to take time to reflect and make an informed decision before going under the knife for any reason.
Medical Consent
What does a healthy doctor patient relationship look like? Please read more about what consent looks like when you’re intersex.
Gonadectomy
Gonadectomies come up very quickly for two reasons:
People find out they have Androgen Insensitivity Syndrome when they have an Inguinal Canal Hernia in childhood. This is when the testis depends and forms a hernia.
Late Starting Your Period, and diagnosed with Androgen Insensitivity Syndrome
In both cases, the descended or undescended testis will be brought up and you will be told to remove them ASAP.
Please consider, instead, leaving the gonads until after puberty, and then letting your child do research and letting them make an informed choice on if they would like to remove their gonads and begin HRT or if they would like to monitor the gonads bi-annualy for any sign of change.
Do not allow doctors who have never seen a case of AIS before coerce you into a surgery they don’t understand because of an out of date scholarly article. That being said, It’s not the doctor’s fault. AIS is a rare syndrome, doctors just don’t get enough exposure to our cases.
Genatal Assignment Surgery
There is a long history of doctors urging parents for surgery to “normalize” their child instead of accepting that an intersex body is a normal body. An infant or a child is far too young to be able to express their gender identity or sexual preference, and a gender assignment surgery can do more physical damage than good. Please consider waiting until your child is old enough to express their own decisions about their body and identity before permanently altering their body.
Vaginoplasty
There are non-surgical alternatives to lengthen the vaginal canal. Dilation has been proven to be effective in lengthening the canal. You can read more about it here in the love section. For some people, though, they are not happy with the results with dilation, and have pursued a vaginoplasty, but it should not be the first solution to lengthen the vagina.
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