Not sure if/what to do anything about nephew's incontinence?!

[Thr0wawayAunt13]

Hey everyone,
Some background; I just moved in with my sister and her son after a few years abroad. I love my nephew to death, and am here to help & support him with anything he needs; but I'm not sure his issues are being properly addressed. He was diagnosed with ASD when he was about 6. Which we had suspected since he was about 4~5 y/old, for a variety of reasons; including the utter impossibility of potty-training him.

He's very, high-functioning & smart in a lot of ways; allowing him to attend some "regular" classes at his school (still has IEP & gets support from special ed. department). Which is why I was surprised to find out that he's still in diapers at age 14. Especially since I know for a fact that he doesn't have any physical disabilities.

It seems like he doesn't recognize or react at all when he goes pee/poop, or needs to go. When my sister & I walked back into the living room I could instantly smell that he needed a diaper change. He saw both of us but didn't say or do anything about his mess until his mother came over to bring him back to his room & change him. Which I just can't understand.

I'm nervous to say anything and risk offending my sister. Sorry if this is coming across as ignorant. I'd love it if an expert could help explain what's going on to me.

And also just help me understand why incontinence issues & delayed potty-training is so much more common with ADS.

 

[jsilver256]

It seems like he doesn't recognize or react at all when he goes pee/poop, or needs to go

I am not a qualified professional to answer, but I think you may have answered your own question.

My kid is long potty trained, but he will have accidents if he doesn't have reminders. And it is always a fight each time. "I don't need to go!" And every single time, he is wrong. He DOES have to go.

I might suggest timers for your nephew to go potty regularly whether he wants to or not. And if there is something he really wants (e.g. screen time) - you can use that as leverage.

 

[Rodafina]

He's very, high-functioning & smart in a lot of ways; allowing him to attend some "regular" classes at his school

It's interesting that you describe him as high functioning but also say, "his mother came over to bring him back to his room & change him." It has raised quite a few questions in my mind. I don't mean to bombard you with questions, just trying to get the bigger picture here.

Is she actually changing him? How capable is he with other personal care needs - can he get dressed by himself? Can he shower independently?

What happens during the school day? Is there an aide or someone who provides personal care during the day? Does he change his own diaper at school?

Does your nephew communicate verbally, and if so, have you ever tried to discuss this with him?

After 14 years in diapers, I would imagine that one can become accustomed to the feeling of having a full diaper and not very attuned to signals of having to use the bathroom. I do think you are right to be concerned and seeking answers here.

 

[DrBadStrings]

I had issues myself with bladder control after a childhood accident I had at age 7 where I was in a hospital cathederized (sp?) for close to 6 weeks. There was a good 2-3 year period where I essentially had to retrain myself to being aware of the feeling of a full bladder. Which scheduled bathroom breaks whether I felt the need to or not helped. It was a rather embarrassing ordeal at that age. So I can only image the stigma your nephew must face at school as an adolescent in puberty. I wouldn't be surprised if he himself might have some shame or self doubt/negative self image and just doesn't know how to convey it, or isn't ready yet.

I think as has been suggested above a gentle conversation would be in order. Probably two conversations, one first alone with your sister. And I have no doubt it'll be a somewhat difficult and delicate conversation to have but I think it is very much needed. And it's coming from the spirit of wanting to help.

 

[vergil96]

Not as pronounced of a problem, but I tend to not notice I need to go to the toilet until it's urgent. The way I solve it is going to the bathroom as a routine like others already mentioned. I go when I have a break or around meal times, I don't try to figure out if I need to or not. Same with the whole rest of needs like drinking, eating.

It's also hard to tell that you stink, the sense of smell somehow gets accustomed. Not just with ASD, in general, it might be impossible to smell your own stink due to habituation.

 

[Kayla55]

Toilet Training Autistic Children

Most of my learnt discipline tips are generally accepted methods known to general population. When I potty trained it was lot trial/error without online guides, mostly.
There was this study program I had reviewed, it used music and buzzer type annoying sound when want you to answer question, never used program but buzzer was used later for potty training. I think I did leave few others tips from personal experience under older thread, if youre interested.

Generally found ABA isn't supported by most on this forum, and I never used mixed approach or recommended what I knew nothing about. Child rearing is all more of a challenge, but one time I suppose it was labelled aba however we just needing to get my son to go out house, more as he really disrupting our lives.