Toilet problems with my very independent teen daughter

Hi, everyone I've never posted like this before but I could really use some advise.

My daughter is 17, and was diagnosed with "high functioning" autism when she was about 5. She is very very verbal lol, funny, well adjusted, social, and we are so proud of her. She is in AP classes in school and has friends. The one thing she struggles with from time to time is having accidents.

She was potty trained around the age of 6, it was extremely challenging because she was so wild at the time and struggled with slowing down enough to listen to her body. Eventually she did it and outside of a couple times a year under abnormal circumstances she was fully potty trained. The problem is she is 17 now and those couple times a year never stopped. Just to address it, she's been to many doctors and even did physical therapy for a year to strengthen her pelvic floor. The doctors eventually concluded that wasn't an issue for her.

I believe there are two different reasons it happens. The first is that she will sometimes have a really strong emotion and just loose control of her bladder for a brief moment. This is always wetting herself and to be honest I can live with it. Normally it happens when she's excited. For example, the last time was at the state fair and she got overstimulated and excited all at once when her brother won a prize at a game. No biggie, outside of her embarrassment, I had clean clothes in the car.

The second reason that it happens is she has extreme sensory aversions to public or unclean restrooms and will literally refuse to use them. This is the one I really struggle to understand, she is so independent in every other area of her life.

For example, last weekend we took the kids to the beach. It's a 2hr drive from the house, so we always stop at the same gas station for a bathroom break, sandwiches, etc. She she said she didn't have to go and rarely has issues so we thought nothing of it. When we got to the beach, just after unpacking everything she told us she needed to poop. The beach had porta potties and I took her to them but she refused to even go in. In the past my husband would cave and drive her to the nearest restroom 20 miles away. This time he told her no. I was in the water with my younger kids watching this all happen. Then after he refused a final time she walked over to the car, squatted, and filled her pants. I really couldn't believe my eyes since she hadn't done this for at least 3 years. Then she just stood there and said nothing. I got out of the water and rushed over to her, I asked if she had an accident and she didn't respond, just stood there. Then I realized how much of a mom fail this was, basically making my 17yo poop her pants because I didn't want to take her to a bathroom she could use. I did my best to help her clean up but we ended up going to in to town for wet wipes and clean clothes anyways. On the way there she told me she could've held it but it didn't matter because there was nowhere else to go. 

I just don't know what to do. It's only a couple of times a year...maybe every 3 months or so but I can tell how bad she feels about it. Obviously there are lessons learned with the beach story but I've cleaned enough poopy butts in my life. The urine accidents are embarrassing but when she pooped her pants she just stood there in it and waited for me to clean her because she doesn't like to touch gross things. What's the solution? Do I put her in a pull-up any time it's a risk? Carry a toddler style travel potty in the car? I'm just trying to make things best for her, if she could control it she would, and if she could make herself use those restrooms, she would. When I ask her how I can help she has no ideas. 

Parents
  • My suggestion would be to insist that she uses your bathroom at home before leaving the house every time you go out. Then if you are going to the beach insist that she uses the gas station bathroom on the way there, before continuing your journey. Even if she says she doesn't need to go, tell her she must try just in case.

    It might be a good idea to see what products you could use in case of accidents when travelling. I think that you are in the US (because you use the words mom, gas station & rest room which are American terms). In the UK there are lots of products for incontinence that might be of help, such as portable female "urinals", bed pans, or incontinence pads and if you are in the US I expect there are similar products available there. Look on the internet with her and ask what she would prefer to use.

    Also, if you're going to the beach it might be a good idea to take a wind break for her to sit behind if using a urinal or bed pan to give her privacy, plus toilet paper and wet wipes for her to clean up. You could then empty the receptacle she used in one of the porta potties.

    I can't think of anything else - it is an awkward situation and I hope you can resolve it.

  • Thanks for the help! Yes, we are American lol. After a brief review of some American autism forums I decided the opinions here might be less 'extreme' if that makes sense. I just don't need someone telling me to punish her for something she clearly doesn't want to be doing.

    We do try to get her to go before leaving home, and she generally does on her own. She even goes before leaving school or friends houses without any prompting.

    I had no idea the variety of products they make for this! A five minute Google has blown my mind and I'm sure we can find something to help with road trips or trips to the beach. I actually feel bad now for not looking years ago.

    Do you have any suggestions for an airplane? We had an unfortunate incident last year and I've avoided booking any trips since. I somehow feel like it's more likely to happen again now that it's happened once, even though I know that's not true.

    It is awkward especially since she is so neurotypical presenting. I hate the way people look at her sometimes. Luckily we have a close relationship and even an hour after the beach situation she was laughing with me.

  • Hi again Katie. Glad to hear you seem to be finding our forum helpful - everyone is welcome here.

    You asked for suggestions regarding airplane travel, and you also said she has an almost phobia of dirty rest rooms. I can empathise with her on that - I also don't like using public facilities, but if I think I'm going to have to use them I prepare. I wear a skirt rather than trousers (pants) as I can lift a skirt up easily to use the toilet, whereas trousers have to be dropped and will touch the floor. I also take some tissues (kleenex) to dry my hands (I don't like hand dryers) and to use to open the door when exiting the bathroom.

    So I have some suggestions for airplane travel - you could buy some disposable gloves for her to put on when using the plane's bathroom, and take some plastic or paper bags to put used gloves in. If the smell is a problem, you won't be able to spray an air freshener or perfume as liquids & aerosols aren't permitted on planes, but you could give her a strong tasting minty gum to chew, as our senses of taste and smell are linked. If she doesn't want to sit on a public toilet seat, you could suggest she practises squatting just above the toilet, and she could also wear a skirt or dress for travelling which is less likely to touch anything that she feels might be dirty.

    If she still doesn't want to use an airplane bathroom, the only other option would be to wear incontinence briefs/pads, but these may be uncomfortable if wet for some time so it would be better if she can have some strategies for using a public bathroom.

    I hope this is helpful.

Reply
  • Hi again Katie. Glad to hear you seem to be finding our forum helpful - everyone is welcome here.

    You asked for suggestions regarding airplane travel, and you also said she has an almost phobia of dirty rest rooms. I can empathise with her on that - I also don't like using public facilities, but if I think I'm going to have to use them I prepare. I wear a skirt rather than trousers (pants) as I can lift a skirt up easily to use the toilet, whereas trousers have to be dropped and will touch the floor. I also take some tissues (kleenex) to dry my hands (I don't like hand dryers) and to use to open the door when exiting the bathroom.

    So I have some suggestions for airplane travel - you could buy some disposable gloves for her to put on when using the plane's bathroom, and take some plastic or paper bags to put used gloves in. If the smell is a problem, you won't be able to spray an air freshener or perfume as liquids & aerosols aren't permitted on planes, but you could give her a strong tasting minty gum to chew, as our senses of taste and smell are linked. If she doesn't want to sit on a public toilet seat, you could suggest she practises squatting just above the toilet, and she could also wear a skirt or dress for travelling which is less likely to touch anything that she feels might be dirty.

    If she still doesn't want to use an airplane bathroom, the only other option would be to wear incontinence briefs/pads, but these may be uncomfortable if wet for some time so it would be better if she can have some strategies for using a public bathroom.

    I hope this is helpful.

Children
  • A hazmat suit might make it a bit difficult to use the facilities! Unless it has poppers or button fastenings underneath, ha ha!

  • Really appreciate the help here. I actually had her read your response and told her she could pick our whatever tools she thought would help. So now she is somehow excited to try. I'm sure Amazon will be delivering something close to a hazmat suit to the house in the next day or so haha.

    I am a bit skeptical, we started down a similar path a few years ago and it never seemed to help. 

    I agree that the briefs wouldn't really solve the problem. If she does have to use them, she won't go into the restroom to change. She'll hate sitting wet too. And heaven forbid she does ever mess in one and expect me to deal with it (the beach incident is fresh on my mind).

    I think my plan will be to see where we get with all the other strategies and then let her make the call on the briefs when the time comes.

    The worst case scenario is she stops wanting to travel or go new places with the family. I'm supportive of anything that prevents that.