Puberty and girls with autism advice please

Discussion in 'disABILITIES Community Board' started by thumpersfriend, Feb 16, 2013.

  1. thumpersfriend

    thumpersfriend DIS Veteran

    Feb 19, 2004

    My 10 year old granddaughter has autism and has signs she will be in puberty very soon. Big problem is she still will not be potty trained. She has been student of the month several times but this still is not happening for her. When they try with her she refuses to have a bm for days and days We have tried everything, I even promised a trip to Disneyworld but no luck.

    What happens when she starts her period? My dil is very nervous and she has made an appointment with a psychologist for the potty training and other issues she has. Anyone with experience with this? Advice, please.
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  3. Disneylvr

    Disneylvr Always Disney Dreaming!

    Aug 20, 1999
    I wish I could give you advice, I just replied because I am in the same boat. My daughter will be 10 next month and isn't completely potty trained either and is non-verbal. We are hoping her pediatrician will have some solutions for us. Meanwhile we have just started a combination of behavior therapy that we hope also helps with the potty training. We also have an appointment with a psychiatrist that specializes I autism. We are anticipating that puberty might be difficult for DD so we are trying to be proactive.
  4. Schmeck

    Schmeck <font color=blue>Funny thing is now my 17 year old

    Aug 26, 1999
    If the young woman is wearing pullups/diapers, then a poise pad can be used in the diaper. If the period is heavy, or difficult, I would think that the pediatrician could prescribe a birth control pill.

    Also, make sure to check out the school's policy on BBP. We have strict guidelines we must follow.
  5. Disneylvr

    Disneylvr Always Disney Dreaming!

    Aug 20, 1999
    That is a good idea! But I have to ask, what is BBP? Never mind, I googled it. So much to worry about...
  6. rewardsinlife

    rewardsinlife Mouseketeer

    Aug 17, 2012
    My boss' daughter is completely non verbal, has the mentality of an 8 mo. Yr. old baby, can not walk..only crawls, has to be spoon fed, and can feel no pain. She is 25 yr.s old now and her mother takes care of her still at her home full time. Anyway, she told me when her daughter started puberty she didn't really think twice about it and thought it wouldn't be such a hassle since she changes her diaper every day. She then said she would have gotten something to stop or reduce the number of times after a couple months of messes...sorry if I get into tmi, here...but I think it is ok. On this thread anyway.

    Basically. Her daughter likes to..we shall say...go around frequently in her birthday suit! She will rip off all her clothes...including the diaper and will scoot and crawl around the house with white carpets...yes I am sure you can imagine. So after a couple of those the fact that the girl would start crying uncontrollably and try to um...sample...what was coming from her body through to the dr. They went to get a pill to take away her periods.

    Her mother put it this way to me as well...she is never going to be able to have or care for a baby of her own since she can not care for herself. She said the dr. Said that taking the pill was the best way to do it. Now it honestly depends on the person...and the benefits outweighing the risks...not every option out there is good for everyone!

    I found a website that talks about this topic , gives options, and tips on how to help your granddaughter cope. I hope the story above and the website give you some options to think about! Good luck!


  7. bocaj1431

    bocaj1431 DIS Veteran

    Oct 16, 2012
    I am sorry you are going through such a tough time. I have a 12 year old boy with ASD and he too has toiletting issues; however, I feel it is much more difficult for girls. My girlfriend has a daughter on the spectrum and she went through the same thing and when it came time for her period, that was a whole other challenge.

    I wouldn't recommend using a psychologist because, that is not something they specialize in. What you really need is an occupational therapist or a certified behavior analyst to help with the toiletting issues. In some schools, depending on the state you live in and whether you have an IEP, you can get them to provide these specialists to assist you. If not, some insurance companies cover OT services.

    I do remember my girlfriend had her daughter learn to use pads before she even got her period to get her used to it. It definitely was not an easy process. It took a long time. That is why you start early; so that, they hopefully will tolerate the pad being there by the time it is really needed.

    I also recommend joining a forum of parents with children who have ASD. You will get many parents who have already gone through this process and can support you. I use and really like them. You can also contact autism speaks and have them put you in contact with people in your area who specialize in the services you are looking for.

    Good luck and hang in there!
  8. bookwormde

    bookwormde <font color=darkorchid>Heading out now, another ad

    Mar 16, 2008
    Schmeck has given you some good advice about her periods. As for toileting, it is always important to remember that our kids are visual learners. There are cute and appropriate videos which provide good "technical" information and are supportive and non threatening in there presentation. Modeling in the home is also helpful, but is dependent on how comfortable you are with modeling. Do not expect immediate results but these a good tools to give your child a frame of reference and to overcome any fears.

    I would consult a gastroenterologist as to her bowel movement frequencies, there are many causes and lots of therapies to allow her to be more regular. At the infrequency it is not about her choosing not to go, but instead something biological.
  9. CuppieCake04

    CuppieCake04 Mouseketeer

    Jun 2, 2013
    my suggestion would be the depo shot, which in most cases will completely stop the menstrual cycle.
  10. belcanto29

    belcanto29 Earning My Ears

    Jun 19, 2013
    I know this is an older post, but I found it when I googled puberty in autistic girls. So glad one of my favorite places, Dis Boards, has so many who are familiar with this struggle. My daughter is 10 and is starting to go through changes. She starts 5th grade this year and that is when I started my period. She is moderately functioning and moderately verbal, thank goodness. But still - I know my daughter and I know this will scare her. She only became potty trained at age 8 and I still must help her wipe herself effectively. And she still needs my help to wash her hair and make sure she gets all clean in the shower. There is no doubt that when she gets her period, I will have to help her with the mechanics of it all. Ugh. I have been begrudging these days for a while, and now they are here. I know it is only a matter of time.

    My husband would be against her being on BC but that is something we are going to have to continue to discuss. Because with all her challenges, and all the ways I have to hell care for her, why wouldn't we cant to make her life easier in anyway we can by eliminating it?

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