Autism and puberty — Childs Work Childs Play
Autism and puberty

Autism and puberty

We will now discuss the topic that no one wants to discuss: Autism and puberty Long before my daughter's hormones began to change I had thoroughly planted myself in denial. Not only would she begin puberty far, far into the future but before it began, we would have plenty of years of cognitive development thus making it extremely simple to explain the physical changes that would occur and how to handle them. Is it necessary for me to say that I was wrong on all accounts? I was blind-sided by hormonal shifts that began long before I expected them to along with physical and psychological changes that I felt completely inept at handling. I could give you the long, agonizing story of the day I feverishly called every OT, PT and autism specialist we had ever worked with in hopes they could please. help. me. or I could just give you some of the things that helped us most. At the risk of scaring and scarring all of you I will go straight to some tips. help with puberty 1. Read "The Care and Keeping of You" together over and over again. Answer questions, look at pictures, get actual anatomy books if your daughter needs to see real pictures instead of cartoon drawings, give her as much information as you can BEFORE any physical changes begin. (You may be reading and wondering if she understands what you are telling her, whether she does or not, read it anyway.) 2. When her period begins set a timer for every two hours. When the timer goes off take her to the restroom and assist her in changing her pad. As time goes on you may be able to adjust the timer for longer lengths of time or remove it completely depending on whether or not your daughter understands the sensation of needing to change. It is better to start off with the timer so that your daughter understands this is an ongoing process and will be a routine for the upcoming week (and then again the next month). 3. If your daughter has trouble with placing her pad in the correct area, take a pair of her underwear and trace the shape of a pad in permanent marker in the place where she should correctly place a pad. If she is receptive to this, repeat the process in enough pairs of underwear to get her through a cycle and use those underwear each month. 4. Difficulty with small motor skills makes not only placement of pads difficult but also disposing of them. This can become a problem when you are in a public place or she attends school. Buy brown paper lunch bags and put a pad in each. When your daughter needs to change her pad she can take the new one out of the bag and dispose of the old one inside the bag and then throw it away. If you are nervous about school, ask the school nurse or a social worker if there is a private bathroom your daughter can use. Have the bags of pads left in that bathroom at all times so that you do not have to worry about your daughter having pads with her when necessary or carrying them conspicuously. (In our case I asked that the woman who worked closest with my daughter was there to assist her in the beginning. I was not shy about how much help she might need and made sure we had someone who was up to the job.) I will stop here because you may already be breathing into a paper bag but there is more I could share and I'm sure many of you may have questions specific to your own situation. Please leave them in the comments or on the Childswork facebook page and I will answer them. Is this a topic you would like to hear more about at Childswork? Puberty is such a difficult time and I would love to help in any way that I can. Let me know what worries you most and I will cover it in the weeks to come.
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Comments

Khadijah - June 29, 2016

These are great tips, thank you!!!

Kelly Mirro - June 29, 2016

this is exactly what many of us need, my asd girl is 5 and i know puberty is right around the corner thank you for writing this :) i shared it on my page because I think we all feel this way <3

Amy - June 29, 2016

Thank you for this! I have a son but have had the same hopes of being able to put this off as long as possible. Do you know of any good books for boys. Things have already started to change a little “down there” and I am feeling the stress.

Just me - June 29, 2016

These are such practical, helpful hints that every mother of a girl with autism should read. So glad you shared.

April - June 29, 2016

How do you handle the sensory issues of how the pad feels while wearing it?

Heather E. Sedlock - June 29, 2016

I have two boys with autism. I have autism myself. My oldest and I both went through precocious puberty. (I have classical autism, and he has Asperger’s). I got my first period on my 8th birthday. He’s turned 14 recently and has full facial hair now and is 6 ft tall. Definitely start early as this does seem to be a pattern among those with autism. My youngest who has classical autism like me and is 11 has not gone through the physical changes yet, but he is starting the psychological, moody, hormonal phase now. Oh joy!

Thanks for bringing up this topic. As someone who has classical autism, I really get tired of being infantalized—we DO grow up.

Mom2MissK - June 29, 2016

Oh. God.

My daughter turned 5. Yesterday. I haven’t even figured out how to potty train her.

I don’t know if I can handle this. Please. Keep all tips coming.

Kelli Stapleton - June 29, 2016

OMG! Amazing tips!! I wish I knew this two years ago! sigh But I know now!! Thank you Jessica.

Peggy Welker - June 29, 2016

Thanks Jessica for posting this. My daughter just “started” in July and we were reading that book ourselves. It was VERY helpful — even with her cognitive delays. We have seen some very “typical” responses from our daughter with autism. After the 1st month, she said “I’m done with this”. She did this thing where she would go to the restroom at school and rid herself of her pad. Then she misunderstood and thought you changed the pad every time you went potty (no, I do not change my pad 6 times a day).

Also, my daughter talks but cannot articulate any self awareness. So I have carefully documented her cycle. I find that the “1st week”, she is super loving, some times easily tearful. The 2nd & 4th weeks, she is just a “typical” kid. The 3rd week she could really bite your head off — she’s very touchy emotionally. I also watch her little body as her stomach area bloats like a balloon. She isn’t aware of this or she doesn’t articulate it.

These are some of the things we are seeing in our daughter. The only thing we have done to help her with emotional symptoms is to give her Omega vitamins which are said to help with moods and with focusing abilities…. and we try to reduce her sugar intake because I believe sugar is linked to emotional roller coastering. Finally, I am investigating the supplement 5htp (I’m not endorsing it, I’m just giving you my information) but would really like to know what other people do naturally to help with the emotions that come with a menstrual cycle.

Finally, my daughter’s learning curve on who to talk to about this has been steep. She got off the bus the 3rd month and announced out loud to a 3rd grader, “I have blood. I’m on my period.” We have told her we talk about it quietly and we only talk to girls or teachers or nurses about it.

I would especially LOVE to hear about how to help with social boundaries… my daughter is naturally very affectionate and her social deficit comes from not having boundaries — she’ll hug the mail carrier even if they are brand new to our route!

Thanks so much.

Jessica - June 29, 2016

Yes, we all need it sooner or later no matter how much we want to put it off :). I hope that these tips help you in the future. Feel free to contact me anytime you have questions.

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