Why Puberty is Even Harder for Girls with Autism
Dr. Frieda Birnbaum, PhD.
Dr. Kimberley Hunt, Pediatrician at HMG Pediatrics at Medical Plaza
Dr. Laura Purdy, MD, MBA, Physician Executive
Going through puberty is a challenging time for any teenager — especially a teenage girl. It’s even more complicated when that teenager has autism and struggles with communication and understanding their new body changes.
When it comes to their periods and everything that comes along with puberty — fluctuating hormones, breast development, and hair down there — strong communication between parents, doctors, and, of course, the autistic teen, is crucial.
Medical experts explain why and how parents can (and should) be advocates for their daughters as they develop physically and emotionally.
Related: Autism Signs in Teen Girls: Why Autistic Girls Are Often Misunderstood
Ignore Judgement From Other Parents
Yes, there is “mom-shaming” in the parenting world, but remember: your daughter’s personal life is just that — personal. It’s no one else’s business.
“I want parents to know that whatever they decide will be the best decision for them and for their family,” says Laura Purdy, MD, MBA, a board-certified Family Medicine physician.
“Parents will talk about medical choices for their kids, and look back with regret the decisions they made--or be fearful that they didn't make the right decision. I want parents to know they’re doing the very best they can with the resources they have, and the child that they have.”
Talk About Puberty With Your Daughter To Help Her Understand
Regarding the puberty talk with your special needs daughter, Dr. Purdy stresses: “You're probably not going to break it down all the way to the level of, "Okay. Now your body's producing eggs once a month. But I think a key to transitioning successfully starts with understanding where your child is, what their capacity is, and discussing it in a way that is on the child's level, in the communication style that she uses.”
Adds Dr. Purdy: “Be prepared for her reaction. If it's something that she doesn't want to talk about, or scares her and confuses her, it’s not the right time for the conversation. Maybe re-evaluate and bring it up later.”
Prepare Your Daughter For Changes Early
“A lot of autistic kids do better without surprises; they don’t like changes or anything ‘new,’ so start talking to the girls well before (puberty’s) going to happen — give them plenty of time to prepare. Years in advance in you have to,” says pediatrician Dr. Kimberley Hunt of Holston Medical Group (HMG) based in Northeast Tennessee and Southwest Virginia.
“Usually, periods start about a year-and-a-half to two years after breast development, so at the first sign of breast development or pubic hair, parents need to start talking to their autistic girls about puberty and how their body’s going to change, and what to expect. If they don’t have any surprises it may be a whole lot easier.”
Dr. Hunt also recommends using visual aids to show your autistic daughter, such as pictures of body development, which can be found online or at the pediatrician’s office.
Discuss Your Teen's Needs with Doctors
Find a doctor you can chat with confidently about your child’s journey through puberty. Dr. Purdy explains, “This is one of the defining moments in the development of a girl’s life. Pre-adolescence marks the beginning of adolescence. There are some very remarkable, distinct needs that teen girls have during this phase.”
“Parents should expect our teen’s doctor, whether that's a pediatrician or family medicine physician, to partner with us, and lead, guide, support, and direct us, through this time,” says Dr. Purdy.
Period Blockers for Girls with Autism
Some autistic teens and their parents may opt for a medication that will block or delay getting a menstrual period. One reason why doctors could prescribe period blockers is that the teen isn’t emotionally ready to handle everything that comes with periods — it may be very jarring for them.
“[Choosing period blockers] doesn't have to be something aggressive,” says Dr. Purdy. “It can be as simple as Depo shots or progesterone-only birth control pills. They're controlling the menstruation, but you're not preventing them from hitting puberty. You're not keeping them from developing necessarily, but you are protecting a high-risk child.”
Don't Baby or Underestimate Your Daughter
“I have had some autistic girls, non-verbal, as young as 9 or 10, who have done amazingly well on their period. It depends on the situation” says Dr. Hunt. “If it’s really traumatic for the family they can talk to their doctor about birth control pills or the Nexplanon implant. Endocrinologists may also have some medical recommendations. I don’t know if I would delay periods unless there wasn’t a medical reason, but girls can go on medicine to help their period be lighter, to control it, or delay it.”
“If they can expect it, it’s a lot less traumatic. Again, a lot of these girls do really well. Teach them how to use a sanitary pad and properly dispose of it, how to mark a calendar when their next period may be--while also acknowledging cycles aren’t always exactly every 28 days or so…if they have sensory issues with sanitary items you can both talk to a therapist for advice, too.”
Use Language Autistic Girls Understand
As special needs pre-teens prep for puberty, Dr. Frieda Birnbaum, a research psychologist, and psychoanalytic therapist in Saddle River, New Jersey shares her advice on communication.
Use direct language. It may be a habit to call private parts silly names, but according to Dr. Birnbaum, instead call body parts such as breasts, vulva, and vagina by their anatomical terms, Offer clear facts about bodily function before your child enters puberty so that they know these changes are normal.
Urge your child to ask questions during your conversation and as they notice changes. Keep the conversation simple. “Comfort her about her changing body,” says Dr. Birnbaum. “This also makes it easier for their teachers and/or occupational therapists to assist them outside the home should they need help in the bathroom or if something feels uncomfortable. “Also, ensure their schools and places of work have facilities that can be used with dignity.”
For even more great resources on teen puberty and development, check out our list of The Best Books About Puberty for Girls.
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Rachel is a NY-based mom of two daughters and a nationally-published writer.