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. Autism wouldn’t make this too complicated at all!
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.
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 and I will answer them.
Here’s a link to another book many thought was helpful:
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Thanks for the information regarding the brown paper bags. That is a great idea. My daughter was 13 when she started but she kind of knew what was going on since she has an older 15 year old sister that she keeps close tabs on. I, too, was hoping for a few more years before we had to experience this mile stone.
Thank you thank you thank you….
My girl is almost 11 and she is already wearing training bras, her older sister started menstruating at 11, so I know it’s coming. Your advice reg. the paper bag is SO helpful, and I will look into the book, and also the resource Angela mentioned.
I have not found many other parents of autistic teenage girls on facebook or twitter, and in her class at school there is just her and one other girl – so I may be looking to you A LOT! Thanks again!
My daughter is 12, and puberty scared me to death. She started menstruating earlier than other girls, at age 9, and I talked with her spec. ed. teacher, and stored her pads with the school nurse (as you suggest). In addition to the book mentioned above, a book that was extraordinarily helpful was Taking Care of Myself: A Hygiene, Puberty and Personal Curriculum for Young People (it covers boys too). It is really meant for the parent (or teachers) to use to develop social stories for kids. It covers things like using deodorant, showering, shaving, and also more difficult issues like explaining modesty, inappropriate touching, and even masturbation. I use it as a resource frequently.
Actually the title was Taking Care of Myself: A Hygiene, Puberty and Personal Curriculum for Young People WITH AUTISM (I left off an important part of the title).
Thanks so much for the resource Angela.
My 11 1/2 year old is starting to show changes. I’m terrified of being able to help her through without too much emotional trauma. Thank you for the suggestion of brown bags and pads! I’m going to start stocking up on pads now, because I’m positive that her menses will start soon.
We’ve discussed placing her on a birth control just to reduce her periods to 4 times a year. Her doctor and I feel this will be easier on her, as the women in my family have a long history of painful, heavy menses. I’m also not kidding myself that it is very possible for someone to take advantage of her, no matter how much her Dad and I protect her…and I know an unwanted pregnancy would be far more devastating physically than birth control. Just one more thing we have to think of concerning our girls on the spectrum. 🙁
Please keep sharing your tips. So many of us could use them.
(mom of 6, second child on the spectrum)
It is all so scary isn’t it? I can say that it was an extremely difficult thing for her to cope with at first but over the years it has become part of her schedule and it is not so stressful. Her moods from the pms are a whole different story though.
I’m sure many mom sand daughters will find this information incredibly helpful.