Puberty and Your Child with Autism

The dreaded time has come:  puberty. As we all know, our kids do grow up despite our protests. We have four children, boy-girl-girl-boy, ages 22, 13, 11 and 9.  So when it comes to this subject we have been there done that, although our youngest child will definitely be the biggest challenge to date; he is affected by autism.

Our oldest was a breeze; he’s very easy going and Dad handled this situation without any problems. Three years ago, I brought this subject up with our family physician and asked her advice on how I should handle it with our next two in line—the girls-mainly because as an adolescent I had a very traumatic reaction to puberty. I wanted to make sure my girls—so close in age, I could make one “talk” go twice as far-were completely aware of what was in store for them, and  with no surprises.

Girls usually have it more difficult than boys when it comes to puberty. There are so many changes that happen all at the same time and as my younger daughter put it, “Why does it have to be so invasive?” She was nine when we had the talk. Both of my daughters took it well; at first they were mortified, then disgust set in, followed by disbelief; yet earlier this year my thirteen-year-old had to accept it. She took it well. Still awaiting the reaction from my eleven-year-old and as they always say, “What goes around comes around.” I have a feeling I might be in for a ride with her.

I did not take puberty well, and that is an understatement. I told my mother to make it stop-whatever it was, I wanted it to go away. I told her I refused to do “that” every month. I don’t know how my mother lived with me, or for that matter how I survived; it was devastating.

That being said, I did my very best to give the most factual information possible to my girls, without being overly graphic. I didn’t want to scare them, I just wanted them to be prepared. I purchased all the necessary items and discussed personal hygiene, deodorant, proper washing techniques, keeping your face clean so you don’t have acne, and explained all the ins and outs of shaving your legs and underarms and the reasons for all of these things.

Then when it came to the uncomfortable topic of menstruation, I referred to the book, and tried to use medical jargon that they could understand. I explained it as simply as possible in order not to embarrass them while still providing all of the pertinent facts necessary.  So many things have evolved since my adolescent years: maxi pads and the tampons that you needed a shoe horn to use are not the only options available these days.

Slim, mini, thin and micro now are all key words on packaging for our adolescent girls.  Even organic-yes, organic-is another option. I am lucky in that my girls are not affected by autism-even if they were I suppose I would use the same techniques, adjusting certain aspects as needed.

1. Use Visuals. I did this with my girls to explain how to use the products. If my girls were affected by autism, I probably would have implemented this six months earlier to allow time for practice, mark on a few pairs of underwear where the pad needs to be placed, have them start wearing the pad to get used to how it feels and gain an understanding of the process.
2. Implement a Schedule. I would devise a calendar-sort of like what we do if we are venturing away from home. I make sure my child is aware of what, when, where and why we are going to avoid stress; my child is always ready for what is to come. I would make sure they mark off the days so they know what to expect-this can be tricky as normally the timing can be off when girls first start having their periods, but typically it will arrive every 28 days. Also, use a schedule to let them know what times during the day they should change the pad and properly wash.
3. Be Positive. Never make it sound like a bad thing; always try to promote things in an upbeat manner. Just remember, “The glass is half full.” Use phrases such as, “My, you are growing up,“ or,  “You are growing into such a beautiful young lady,” etc., always striking a positive note.
4. Monitor the Inventory. Make sure you always have the products on hand; nothing is more traumatic than Mom calling Dad and stating, “Pick up the pads and tampons in aisle 5 for your daughter.” Talk about embarrassing, not to mention the horror of having to use toilet paper in their panties. Talk with the school and make sure you have a supply for them somewhere so no accidents occur around their peers. Lord, I remember how awful that was for me-I can’t imagine how traumatic it would be for a child with autism.
5. Use Social Stories. These can be hugely beneficial in relaying critical information. Here is a resource where you can learn to make your own: http://www.thegraycenter.org/social-stories/how-to-write-social-stories Halfway down the page there is a section about puberty.
6. Access Relevant Resources. Here are a few books on the subject:

Girls Growing Up on the Autism Spectrum: What Parents and Professionals Should Know About the Pre-teen and Teenage Years by Shana Nichols

Sex, Puberty, and All That Stuff: A Guide to Growing Up by Jacqui Bailey is a more detailed book about puberty, dating and sex.

Period.: A Girl’s Guide by JoAnn Loulan (2001 version)

How about boys? My son is soon to be ten so this subject is inevitable and looming like a boulder over my head. I don’t like to use terms like high functioning or low functioning, so I will say my son is a six-year-old in a nine-year-old body. That being said, there is no way I could explain this to him so that he would understand.

He is very visual, needs prompting and plenty of support.

This will be the perfect time for me to work on his life skills with him. I tend to hover: it is my downfall, but I don’t want him to fail or be embarrassed. So, it is my fault that he still can’t button a shirt, zip his pants or tie his shoes. This is going to be a learning experience for me in what I lack the most: patience.

Hygiene and modesty seem to be the key for boys. So using deodorant and proper washing techniques need to be taught.

Visual schedules on how, when and what need to be available. Working on these techniques until they are mastered and giving praise every time will be the strategy I use.

Please keep in mind that most deodorants and body cleansers have ingredients in them that can cause issues for your child. Here is a list from the Organic Consumer’s Association’s directory of USDA Certified organic body care products: http://www.organicconsumers.org/bodycare/links.cfm

Now for the embarrassing spontaneous erections: just as with neurotypical boys, you can teach your son to cover things up with a book when the time comes. And in my diligence to teach those very important life skills, I need to teach modesty. My son has a habit of urinating outside and I need to be sure he understands that we don’t expose ourselves in public.

With the hormonal changes of puberty, there are more serious health concerns when it comes to our children affected by autism. I am adding a link to a very important paper, “Puberty and Seizures,” written by Stephen M. Edelson, Ph.D.

http://www.autism.com/ind_puberty_seizures.asp

We can go on this journey together.  I am dealing with this life-altering situation right along with you, so if you have any further questions, or if  you have found a brilliant strategy that works, please share with the rest of us on the road through puberty.

Until next week, Happy Trails to you and yours.