Incontinent 17 year old with Autism

[Vader444]

My son is about to turn 17 and is still wearing incontinence pads. He has Autism and will not poo on the toilet. He will wee if prompted to use the toilet, but does sometimes wet in the pad too. He has some level of bladder and bowel control, so I've always thought continence is achievable. I just need to find the key to it. Can anyone in a similar position offer any advice please?

[whennaturecalls]

Hello, if your son has some degree of bladder control Releaf bags (releaf.ltd) may be of interest to him. If so, please do get in touch with me via the Contact page on the website and I will arrange to send you some samples for him to try. They don't work for everyone, but for those who do like them, they have reduced the stress and anxiety of urinary incontinence for both them and their carers. I hope the bags can help your son too. Kind regards, Keith

[OlivesYou]

Hello I feel like we are in the same situation. My son is 16 with autism. He has been constipated basically his whole life and I think he may have learned to hold the poo and now his bowel does not tell His brain it’s time to use the toilet. And so now the only thing I can think of is that it must be a sensory issue. I haven’t found any occupational therapist that will consider working with us because they literally don’t know what to do to get someone to use the toilet.

We have had few successes but I’ll take them! I will share what we’ve tried ;

Will your boy sit on the toilet and try?

Does he take senna? Any laxatives

Do you know if he’s constipated? Does he have feeling in his bottom? Will he tell you? Does he know how to pee sitting down?

My son is non verbal so I have Zero idea on some of these answers for my son. But feel they are important to know

Sorry I know my post if prob overwhelming. I’m just thinking we could get some ideas from each other!

[Vader444 in reply to OlivesYou]

Thank you for responding to my post. My son has limited speech so it's difficult to know what the issue is. He sits on the toilet to pee, but will not poo. He doesn't take any laxatives and based on medical advice doesn't need to as he's not constipated. If he's engaged in a 'special interest' he will also pee in his pad, so we have to break his concentration to remind him to use the toilet regularly. If his pad leaks he will say "wet". He is dry overnight, hence why I believe continence could be achievable in time.

We've tried a lot of the generic approaches such as reward charts, reading a book whilst sat on the toilet, reading a social story etc. He is not motivated by sticker rewards at all and books are one of his special interests so they distract him from the task. He wasn't interested in the social story. His pad is changed in the bathroom and he is encouraged to flush his poo away after we put it in the toilet. Like you I cannot find anyone with professional experience/knowledge of these situations. Sometimes I think we should just accept this is how it will be, but I think we would be letting him down.

[OlivesYou in reply to Vader444]

I’m so sorry I meant to reply to you while ago!Covid happened and our world crashed down

I wondered how your son is doing now? Have you had any successes? We are having some successes here by using senna and movicol together seems to be helping.

I was just thinking about how you might be doing as well. 💕

[Vader444 in reply to OlivesYou]

Hi there. Good to hear things are improving. No change here, although this week he grandly announced 'poo in my bum' after soiling his pad, which was highly amusing. There is definitely more awareness which I hope in time will lead to him using the toilet. Keep going!

[OlivesYou in reply to Vader444]

Yay! That’s what happened here as well it seems like his bowel has shrunk enough for sensation (maybe xray would show) and now we seem to be getting some feeling back! I hope so for yours too!

Also one idea, maybe your son would like to try a handheld video game or iPad to use ONLY in the bathroom — very good motivator 😉