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Background

My daughter recently turned 4.

In December, she was diagnosed with autism. She is on the mild (verbal) end of the spectrum. She has communication and social issues, as well as some self care and behaviour issues (tantrums).

Toilet training attempt #1

Shortly before she turned 3, we tried to toilet train her for the first time. We did this for a few weeks and it became much too stressful. She never told us when she needed to go, and we constantly needed to prompt her. The end result was constant weeing on the floor, a couple of frustrated parents, and being put back in nappies shortly after.

Meanwhile...

For most of 2014 we had a few major events (including the birth of another child) which put toilet-training well on the back burner. She was pretty much in nappies the entire year.

Although, she would often express an interest in going to the toilet (or potty) to make a wee. We would take her nappy off in these situations and let her make a wee like a "big girl". We would always praise her and do a big song and dance whenever she had a successful wee on the toilet, and she seemed to delight in this.

Toilet training attempt #2

In January this year we decided to give it another go, and with this 2nd attempt we were much more determined to be successful. So off came the nappies. "You're a big girl now, and you don't have to wear nappies anymore. Big girls go on the toilet". She seemed to enjoy this concept. The only time she goes in nappies now is when she goes to sleep (because we don't want to have to clean her sheets every day).

The accidents still happen fairly regularly. We keep on telling her "please tell mummy or daddy when you want to go to the toilet". She seemed to understand this, but very rarely tells us she wants to go.

Fast forward 5 months to June...We don't seem to be making a lot of progress, and we're going a bit nuts.

Summary of issues

  • She very rarely tells us when she wants to go.
  • We will usually start to see signs of her wanting to go (pushing legs together, walking funny) but by that stage it's often too late and she's already wet herself.
  • If it's been quite a few hours since she last went, we'll try to take her but she will refuse. I have discovered recently that bribery (allowing her to watch a cartoon on the toilet) helps though. And if I managed to convince her to go to the toilet, she'll make a wee (she clearly needed to go).
  • If she has a tantrum (for whatever reason) she will usually wet herself if she hasn't gone for a while.
  • She oddly seems to be better at kindergarten and has less (wee) accidents - they have smaller toilets there which are more accessible than our home one, which might encourage her to go. She also mimics other children who are going.
  • We offer both the toilet and potty at home to encourage her to not go in her pants.
  • Dirty public toilets are a no-go zone (understandable, I don't really like them either).
  • Often when we are out (e.g. at a restaurant) she'll say "I need to go the toilet". We get very excited that she wants to go, but then we take her and she doesn't want to sit down. Apparently she just wanted to go the toilet room, but not actually make anything.
  • She always tells us after she had made something in her pants, just not before she has made it.
  • If she makes a wee on the toilet (quite regularly, when we are able to convince her to go), we always make a big song and dance of it, rewarding her with stickers, stars and rewards. She enjoys this attention. Positive reinforcement to the max.
  • She seems to also realise (maybe) that drinking water leads to wees, and doesn't seem to like drinking water as much as she did when she was in nappies.

What about number twos?

That's even more stressful. In all this time toilet training, she's only made a poo on the toilet maybe once (and that's when she was caught about to make one in her pants).

Otherwise, it's either in her underpants or her nappy (when she's in bed).

She has mostly dropped her daytime nap now, but often she'll tell us that she wants to go to sleep during the day. She knows we will put a nappy on her for this, and after she goes to bed she'll often call out 5 minutes later "I made a poo". We then change her, and she wants to be awake again. All apparently very premeditated on her part...

Getting her to makes poos on the toilet is close to impossible. We have even let her sit on the toilet or potty with a nappy on just so she can get used to the concept of making a poo in that position. But she still won't do it.

Sorry for being graphic, but when she does make a poo they can often be quite messy ones (not diarrhea but not solid either).

Advice we have received

We have seen a psychologist and occupational therapist who advised the following:

  • Social stories (provided to us) about toileting, in both book and DVD form. The book even has pictures of my daughter in it to try to encourage her to do the right thing.
  • Making the environment at home peaceful and non stressful.

We always try to remain calm when there is an accident, but we all have our moments and sometimes it gets a bit much.

Where to now?

They say that insanity is doing the same thing over again and expecting different results, and that's definitely where we're at now.

Anyone have any ideas about how to tackle this seemingly insurmountable problem?

5

I don't have any experience with potty training a special needs child, but I have potty trained three boys, and even though they are normal (developmentally anyway) it was very frustrating at times, and we had our brushes with total madness as well. So, in that respect, it appears potty training is progressing normally for you. Hang in there, your child will eventually use the toilet, but, perhaps later than average due to her unique issues. That being said, as a "veteran" potty trainer, and one who has also experienced a child who progressed atypically--see my other answer for background--I can offer some advice that you may find useful:

You MUST quit using diapers completely. My three year old still wets the bed frequently, and although it's tempting to just diaper him at night, we have developed a routine that preserves both the mattress and our sanity. We use a cloth top/waterproof backed pad (called a "chuck" in the hospital industry) on top of the sheets to prevent having to change the sheets in the middle of the night. We use the washable type because our family believes in minimizing waste but you can also find disposable pads if you want to minimize laundry. We also used to put wool underpants on top of his regular underpants. He no longer needs these, but they were very useful when he first trained. It's an extra layer of absorbency without being a diaper. (Real, high quality, 100% wool is bacteria and odor resistant, and is comfortable year round, btw.) Once the child and the bed are "prepared for the worst", we take him to the toilet at bedtime, then again an hour later, then again whenever we go to bed. We also used to set an alarm for very early morning (3:45am) to take him again, but he no longer needs us to do this-he gets up early morning on his own to pee. He is also finally, after 4 months of this, starting to have some dry nights. I realize that in your case, your daughter poops at night, but, I image she's peeing too. Either way, she's got to get out of diapers, and, by getting her up frequently, you can...

Catch her in the act of pooping that is. You already know what time of day she usually poos (or, night). The trick is to consistently intercept the poop and get her to do it...anywhere else BUT her diaper. Be open, and creative. She didn't just stand up and walk right? There were many stages that led up to it, so the same is true of using the potty. Maybe some kids just wake up one day and start using the toilet, but none of mine did, and yours isn't either. One of my children preferred to hide behind a bush to do his business. I guess he felt comfortable there. So, we let him poop on the ground behind the bush for a few days, then we put the potty back there. He pooped on the ground next to it a few times. Finally he started going on the potty on his own. Then, we got another potty and put it in the house. On rainy/cold days or at night we would convince him with bribery to use the inside potty. He insisted we put it in the shower (for privacy?) within a few weeks he was using the potty consistently on his own, not in the shower. My youngest, most recent "graduate" also wanted privacy, and preferred to squat to poop. We couldn't manage this on a potty, despite several attempts at platforms I custom built to facilitate squatting over his potty. (I guess it was good woodworking practice at least!) The solution that worked was to use newspaper (just like a puppy!) next to the toilet. He knew he needed to be in there but just wasn't comfortable sitting and didn't want help. We would dump the poop in the toilet and then compost the paper. we are just now getting him to poop in the toilet by using a really high stool that gets his knees above his hips when he's sitting on the toilet, and in public restrooms we use the handicap stall which allows him to squat while on the rim (we put the seat up so his sneakers aren't on the seat). He faces the wall and holds the rail with both hands for balance. Both of these examples are what worked for my kids, and I'm not saying either of these is a magic method. What I'm trying to illustrate is that if you think outside the box and work with your daughter's natural tendencies you will find the key to success for her.

Foster independence Accidents happen. It seems like you are doing ok with keeping your cool when she has set backs, and that's great-keep it up. You're right though, sometimes even the most patient person loses their cool in the face of repeated failure. Everybody here can totally empathize with the frustration you are feeling! I bet your daughter is frustrated too, and probably disappointed and embarrassed, especially when your frustration is even slightly detectable. She perhaps can't express it (she, and many "normal" children this age, lack the emotional maturity to effectively handle embarrassment and disappointment and/or the words to vocalize what they feel), but she can definitely sense it, which will only compound her negative feelings. You are right on using positive reinforcement, but perhaps you are at the least not maximizing opportunities and at worst sabotaging it with subconscious resentment. You can't do much to stop being human, so, while she is still working on using the toilet you can teach her other self-care skills to make her failures less frustrating for you. This will ease tension between you and her, and will leave her with only her own emotions to deal with. To make her more self sufficient teach her to clean herself up when she wets herself or poops her pants. Have clean dry underwear and pants accessible, and show her how to wipe herself with cleansing wipes to get rid of the urine or poo. For poop she still might require help but let her at least try to do it herself. Praise her for her efforts to clean up the same way you do when she uses the potty. She's not using the toilet, but she is taking care of her own business. Having her care for herself takes some of the burden off you, decreasing resentment, and gives her control over the situation. Having control reduces anxiety and increases confidence, which can only help her. The other effect it has, if she dislikes having to clean/change herself, is to provide a "natural consequence" of her wetting/pooping her pants, other than feeling like she disappointed you, and may act as a deterrent. Eventually, she'll figure out it's so much easier (for everyone) for her to just go in the potty than to have to stop playing to change clothes. This is what worked for my oldest child (well into primary school I might add )-:< )

Make it a social event You mentioned that she does well at school when she's around other kids because she emulates behaviors. Why not let her do it at home too. Make a habit of bringing her to the potty when anyone else at home does. We have had an "open door policy" at our house for nearly a decade now (I'm actually looking forward to the challenge of teaching them the concept of privacy now that everyone is toileting independently. Oh, how I miss peeing in peace!) This will get her in the habit of going before you go out, in the morning, before bath time, etc. Maybe increase your own frequency to model and reinforce "trying" which will teach her to go before it's an emergency. Kids lack the muscle control to hold it at first, so once they recognize the sensation it's too late. Plus, it sets the example that everyone needs to take time to go potty during the day.

I hope I've covered all the angles you haven't already and you find a solution that helps your daughter achieve bathroom independence, no matter if its my answer or another source. Just remember that there are many paths to success, and, that it WILL happen. If nothing else, make sure you take some time to relax and have fun so you can make it out of this challenging time with your sanity (mostly) intact!

  • That is a really nice answer with a lot of great ideas. I personally like the "explain her to clean up herself" part best. – martin Jun 14 '15 at 18:07
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    Thanks @Jax so much for the level of detail you have put into this answer. Some really great suggestions here. – Frustrated parent Jun 14 '15 at 23:00
  • @frustrated parent I'm glad to hear I've provided some fresh ideas for you to try. I'll check back to see if u add updates-hopefully something works! – Jax Jun 14 '15 at 23:28
4

I have personal experience toilet training one neurotypical boy, and one neuroatypical boy, although he is not on the autism spectrum -- he has Tourette Syndrome (TS) and ADHD.

A friend whose daughter is on the autism spectrum was in a similar situation as yours, with respect to urination. At about the same age as yours is, she worked out a sticker system with her and used an electronic timer. At certain intervals when the timer beeped, my friend took her daughter to the bathroom to try. (The sticker was given for either for trying or for succeeding.) Her daughter was very cooperative. They had worked out a nice reward after a certain number of stickers.

Our pediatrician told us about an alarm we could buy to help with training for urination at night We used this very successfully to train our child with TS to be dry at night, which we did when he was almost 8. I bought the alarm, and a book to go with it, from: http://bedwettingstore.com/bedwetting-alarms.html.

My first child wanted to poop in a pull-up, so when he was solid with urinating, for a while I let him take off his underpants and put on a pull-up to poop; otherwise, he would get quite constipated.

When we were ready to tackle pooping, I offered a ring seat on top of the toilet seat and potty. Neither of those appealed to him. It was the middle of summer, and we compromised. Initially he felt comfortable just getting undressed from the waist down and going outside and squatting. When he was done I gave him a garden trowel and asked him to take the poop down to the compost bin, just as we did when we found cat poop in an awkward spot. He was fine with that. I built it up as the big success. After three days of a daily poop with this approach, it rained, and he was persuaded to poop by sitting on the ring on the toilet. Once he had had once success with the toilet, he didn't need to go outside any more.

Edited to add:

For public places -- one approach is to minimize visits to public places temporarily. Another is to take the potty with you everywhere you go.

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    apparently, "housebreaking" (like we do with pets) is more common with children than expected! All my friends and family though I had lost my mind when I let my kid poop in the bushes! Hey, it works! – Jax Jun 15 '15 at 1:48
  • Taking a potty with you everywhere is a good tip. It's inconvenient, but not forever. – superluminary Jun 15 '15 at 14:34
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We have a child who is mildly Asperger's, and our story mirrors yours in many ways. He was six before he was dry through the night.

We tried many things over a few years, but victory came with a concerted effort, following a plan from a physiotherapist who specialises in this.

The plan is:

  • use a bed wetting alarm (ours is similar to this). The child tests it every night (lick finger, touch sensor, make alarm go off, cancel alarm with button on the speaker part). The child absolutely must be the one who cancels the alarm when it goes off in the night. The parent must rouse the child, but don't go as far as physically lifting the child up. The child has to be awake enough to cancel the alarm and then take themselves to the toilet. The rationale is that you're building an association between the urination sensation and them waking up. The idea is that they will soon beat the alarm and wake up before weeing.
  • use a mild laxative. There is the concept that most bed wetting is caused by mild constipation, and the pressure of the constipation blocks or overrides the sensation from the bladder. Our boy was fine for a long time during the day, but wet during the night. So maybe the sensation for him was weak enough to not rouse him at night, but strong enough to be noticed during the day
  • have no drinks in the last hour or so before bed. Compensate by having bigger drinks before that. The rationale is that having the bladder less full gives them a better chance of success
  • have big drinks to start the day. This keeps the hydration up, but also stretches the bladder. Ours ended up having three decent sized cups. If water is too unpalatable, have one water, one milk and one juice. We had to offer a chocolate treat if he got through all three drinks soon after breakfast.
  • have a reward chart. Seven days dry gets a treat of some kind.
  • expect progress and some regression, especially during winter as perhaps they sleep more deeply
  • stick with it for a few months. Our boy came to loathe the alarm (being on the spectrum the loud noise was particularly disliked). But you have to follow through.

It worked for us. The physiotherapist is revered in the family with demi-god status. We are still giving him the laxative, though I'm not sure it's necessary. We stopped the alarm some time ago. We haven't had any regression.

Good luck.

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Allergies are a possibility

As the parent of an ASD kid, you might need to factor in allergies. Our intelligent, verbal ASD son had a problem for years until he was diagnosed with a milk and soya allergy.

Once we took him off the milk, toileting immediately became much more predictable and he gained much more control. Prior to this he appeared to have very little idea when he needed to go or when he'd been.

I mention this because you said that your child's poos are messy. ASD and allergies often go hand in hand. This may not apply to your situation but it might be worth considering.

It's important to remember that not every ASD problem has a psychological solution. Best of luck with it.

Some of the information contained in this post requires additional references. Please edit to add citations to reliable sources that support the assertions made here. Unsourced material may be disputed or deleted.

  • This is an interesting statement: "ASD and allergies often go hand in hand." Could you please add a reference/source to support it? People might like to do further reading on this subject. Thanks. – anongoodnurse Jun 17 '15 at 6:41

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