Toilet training & ABA

[Tiredboymum22]

DS (4) is autistic but verbal and very intelligent (he probably would’ve been diagnosed with Asperger’s 10 years ago). He’s independent in many ways except when it comes to toileting. We’ve tried everything including putting pants on him. He wet his pants and when we asked him why he didn’t use the toilet, he told us it was because he wasn’t finished drawing. He withholds his poo and when it does come out it’s horrendous and he has no control. Pants are out the question when we’re out and about. We’re at the end of our tether. A nursery nurse tried to help us to no avail.

I’ve gone in hard now. I’ve told him he doesn’t get to watch YouTube or play games on his tablet until he sits on the toilet at least three times a day. I feel kinda bad because there are sensory games that regulate him when he’s anxious and I’m using them as bargaining chips. He refused to let school change his pull up the other day and came home soggy and dirty with skid marks in his nappy. It’s a battle to get his bum clean with wet wipes. I’ve actually looked up ABA techniques regarding toileting and I’m going to ask the school to implement them.

I know it’s a controversial method within the autistic community but professionals have been useless!

My son has severe autism and learning disabilities ,when I toilet trained him when he was about 9 or 10 we broke it down into simple steps so started off just taking him to.the toilet and rewarding him for just going into the bath room etc and eventually building it up.until.he would use the toilet independently ,he has a has always gone to a special school who.were tremendously supportive
It doesn't matter what strangers on the internet who don't know your child think if it works for him, then so be it.

You can’t force it. Don’t try and make it happen with ‘training’ and punishment etc.

He is disabled- he can’t help the stage he is at- if you start being hard and upsetting him all you will achieve it to increase his anxiety and cause him emotional harm, and will just add more problems to the situation.

It’s annoying and frustrating to be dealing with toileting issues for years, especially when you see all your friends children moving past them, but that’s life with a disabled child. Mine was 8 before he could manage toileting on his own.

Don’t use aba- it’s horrendous and damaging.

My dd has asd. She did aba as a toddler. She was toilet trained at 4. It was simply taking to the toilet very frequently, giving her lots to drink and rewarding her with huge praise when she did something in the loo. It worked though it took a few weeks. Poos took a bit longer but she got there in the end.

Aba approach can be really helpful with the right consultant
It s a rewards / positive reinforcement based system at its best. Nothing wrong with that . Worked for my ds to toilet train age 9

@Tiredboymum22

I'm an aba fan, my dd had 16 hours a week paid for by an early years project in the us from age 2. She was non verbal until 4 so we really thought she wouldn't talk at all, her autism was too severe for an Asperger's diagnosis then ... but thanks to professional aba when young and techniques since by me she's at university, I honestly think she would have been in special ed then into residential without it. Ok can't prove it, there lays the problem, but all the youngsters that were in her programme (it was an experimental project) have done well.

I admit I don't know a lot about ABA, but isn't this just how most people toilet train their children?

And aba is opposite of op saying you cannot do/get xx until yyy. Do not do that op. And removing what calms him is just daft.

Aba says , if you do zzzz, you get abc..

And breaks down into small steps so he should be getting positive reinforcement for every small step towards the goal . Turn it around .

Today he gets abc for any small step towatds sitting on toilet

please talk to ERIC who are experts on this. It will take months of gradual approach

Exactly!!@ aba is rewards based positive reinforcement ! Just like most approaches to children !!!

There’s a huge imbalance in how he processes stuff which I suppose is typical for ASD. He memorised my phone password and I woke up to him sitting next to me in bed at 4.30 am using my calculator. He’ll go downstairs and turn YouTube/Stickman on without help. His reading and numeracy levels are way above his peers and his teachers described him as gifted. He’s sociable and loves parties and used to
attend dance. However if I take him to a party and he needs a poo, he’ll hide for ages and try to withhold it until it just comes out. He’s missing out on things he enjoys because of his refusal to use the toilet. He missed out on the best part of a party the other day because he spent almost the entire time hiding trying to withhold his poo and refusing the toilet. When it finally came out and I had to change him, he wanted to join in and play with the other kids but it was almost time to go home. It’s severely restricting him but I can’t get him to see it.

We tried a star chart and as soon as he got his presents for sitting on the toilet 10 times he stopped cooperating. Taking YouTube away feels horrible as he loves watching numbers and how the human body works, but I’m out of options! It’s not that he doesn’t understand. He just doesn’t want to.

What have you looked up exactly? The Foxx and Azrin protocol is barbaric. There are other ABA approaches that focus on building patterns, but you need to be very clear about what you’re consenting to.

I’d suggest reading around the sensory issues too as sadly many ABA practitioners aren’t trained on this aspect. It sounds like your wee lad might have some difficulty with introspection, or feeling what’s happening inside his body. In the same way he might be over or under sensitive to sights/sounds/tastes/smells, an OT would consider his awareness of internal feelings, balance, and the position of his body in space. They’re very important for toileting.

A good behavioural therapist will help make sitting on the toilet reinforcing, but that requires a bit more finesse than just removing access to all the good things (and sadly many aren’t trained beyond the crude basics)

A functional analysis of the bathroom and toileting behaviours should be conducted to identify all the difficulties. It needs to be the right temperature, be mindful of smells, the seat needs to feel secure to him, and his feet should be resting on a stool. You might need to look at desensitising him to wipes, to splashes from the toilet, to the sound of flushing etc.

Your ideas are good - it sounds like an toileting schedule would work well, but is 3x daily a number you’ve chosen at random or does it correspond roughly to his pattern? How do you plan to signal to him that it’s time to go - if it’s by clock time he may struggle to break the rule at times when he’s sick/the school schedule changes/ hour goes forward. Depending on his profile you might need to consider a variety of alarm sounds rather than a single sound, etc.

You cannot force an autistic child to use the toilet, the same way you can’t force a toddler, they have to have made the connection with wet = uncomfortable and also when their body lets them know that they need a wee or a poo.
forcing leads to frustration on both sides

@Squirrelsbite he was happy to sit in wet pants until he finished his drawing. It didn’t phase him. Not using the toilet is affecting his quality of life as well as ours. He has no intellectual disabilities and WANTS to play with his peers and go to birthday parties and dance classes, etc., but unfortunately the toileting issue affects his interactions and ability to enjoy himself because if he’s around others he’ll hide (he doesn’t mind at home). I understand what you’re saying but I want what’s best for him and I don’t believe eating an incredibly restrictive diet and having nappy rashes at 4 is helpful.

The problem with ABA is that it's a relatively short-term strategy, designed to separate parents from their money before the cracks begin to appear. It's very much like those shows like The Dog Whisperer - great results while the camera's running, and a few months later everybody's in a worse position...but the TV crew's sodded off by then and nobody cares.

Similarly (but over a longer timescale) ABA looks like it's doing wonders, and your kid appears much more "normal" because they're masking like hell...and 10-20 years down the line - when they're an adult and no ABA practitioner cares any more - there's a high chance they'll have a spectacular burnout (or series of burnouts) which puts them in a mental hospital through the strain of the heavy masking they've had forced on them. Even better, the link is difficult (if not impossible) to prove, so there's no legal liability either.

With that said, however, some of their approaches to toilet training may not be entirely useless (a broken clock etc), but in your son's case I'd say that the problem is probably related to immediate versus delayed gratification - since screen time is something he values, it might be worth allowing him to play games/watch YouTube while he's on the toilet? That way, you can encourage him to see toilet time as a welcome break and a positive time, rather than something that just gets in the way of whatever he's doing at the time.

It's worth noting that this is something autistic adults grapple with all the time, especially during periods of hyperfocus - being so focused on something that we don't realise we're neglecting bodily functions (including needing to go to the toilet, but also food/water/etc) until it's nearly too late or we're feeling sick with hunger. It happens to me several times a week and, at 46, I still haven't found a reliable solution to it.

@ntmdino thank you for your reply. I understand your concerns around ABA. I think the way it was practiced in the nineties and early 00s was harmful in many ways. I don’t want my son to mask or feel he has to appear neurotypical, but I am worried about these issues severely impacting his quality of life later down the line if we don’t intervene enough now. Obviously it’ll be more difficult for him anyway as he has sensory issues, etc., I just don’t want it to limit his potential.

The issue is...ABA is designed entirely to get the child to mask heavily - the whole point is to make them appear "normal", which is why so many have problems with it.

It was designed in a time when "appearing normal" was the absolute priority, when deviating even slightly from typical meant you'd become an absolute outcast from society. However, in today's world (outside the US, at least), awareness is growing to the point where society is far more tolerant of those who appear different even now, so putting that much effort into "appearing normal" isn't actually beneficial any more (and certainly not worth the cost).

As things stand, from what you've said, it seems like the only barrier to your son's social progression is the toilet problem (with the best will in the world, nobody's ever going to get anywhere socially with wet trousers...I don't think society will - or should - go that far...), so maybe drop ABA from the thought process, and focus exclusively on that? Like I said, this is not an unusual problem even for autistic adults.

For my part, if it helps...I'm very rules-based, and always was as a child, so I had a set process for going to the toilet (order of operations), and a set trigger/schedule for it (the end of a class, or the end of a TV programme if at home). It helps that my mother's also autistic, so she knew exactly what she was dealing with and trained it into me from a very young age; to this day, I still use exactly the same triggers and exactly the same process for going to the toilet (same for baths, getting dressed, going to bed...).

He has developmental disabilities, that is the nature of autism.

He may be extremely intelligent and academic (mine is in several areas- he explained the stock market and interest to me when he was 8. Yesterday he was having a full discussion about the influence of goods not having inbuilt obsolescence on the collapse of the economy in 1930’s America, he can tell you at a glance about the processing power of a laptop or iPad).

He is 9 but he has only just managed to wipe his own bum normally.

We have had refusing to do it, refusing to get on the loo, to get off the loo, wiping so much he bled, barely wiping at all, pretending he didn’t need to go and all sorts. He still can only toilet effectively on his own when he is at home- he can’t yet transfer the learning to other environments.

It’s really really frustrating, and so sad as a parent to see disability negatively affecting your child, but just thinking he ‘should’ get it because he is a bright kid won’t help any of you. You need to accept him as he is- I don’t mean don’t work on it, clearly you need to, but there isn’t a magic fix. As he gets older his autism will affect him in other ways too, he has got it for life.

ABA is largely seen as abusive in the autistic community. Toilet training is largely down to control of bowels and bladder and will develop when your child body is capable. It shouldn't be forced. Nor should children be punished for something they have no control over. My son has asd. We started trying when he was 3. He got a sticker for a good try. Loots of fuss when he did it . All positive, lots of tries during the day. He trained at 5 in day and 6 at night.

There's a great Facebook group called ask the autistic adults. They give amazing advice. You need to adapt your perspective of normal. And please don't punish your child for something that is a physical development

@Tiredboymum22

I appreciate your frustration but I would back off from withholding favourite activities unless he sits on the toilet. This is likely to stress him (and you!) out more, making the process more difficult.

We broadly used the approach in this book for our DS, and he cracked it just before his 5th birthday. It sounds like your DS may benefit from some specialist OT input as well. If his 'sensory window' is larger than average, it means that he needs more sensory input and he won't be bothered by things that would impact others. Our DS never cared about being wet or dirty and wouldn't indicate in any way when he needed to be changed. When he started using the toilet, it was very hard for him to learn to recognise the feelings in his body which would help him know he needed to get to the toilet.

The Potty Journey: Guide to... https://www.amazon.co.uk/dp/193457516X?ref=ppxpopmobapshare

Now, we let DS sit on the toilet with the iPad as then he is relaxed and more likely to be able to clear bladder / bowels properly. He also needs 2x sachets of Movicol daily as otherwise he gets constipated and this leads to soiling.

It is the nature of autism that we have 'spiky' profiles, meaning that there will be skills which are significantly delayed compared to others. I have a skilled professional job but find it very hard to manage some personal care tasks for instance!

This has turned in to quite the essay(!), but hopefully at least some of it is helpful.

Good luck to you all 

Toileting and self care isn't about intellectual ability. I was reading a PHD Cambridge professor talking about his challenges with doing up his shirt buttons.

Your son is only 4! Take the pressure off.

I found this an interesting and relatively balanced perspective on ABA:

https://whyy.org/segments/how-a-therapy-once-seen-as-a-victory-for-autistic-kids-has-come-under-fire-as-abuse/

@Grimbelina really interesting article. Thank you.

Compliance and conformity isn’t my goal. I don’t want him to appear as a neurotypical kid because I love him for who he is. But toileting and personal hygiene is essential for his well-being.

He refused to let teachers change him the other day. He was sat in a soiled nappy all day probably avoiding other children because he has enough social awareness. When we got home I was dealing with a 7m baby and him screaming the house down because he didn’t want to be changed. He just wanted his tablet and games. I snapped and said no toilet means no YouTube and games. “You only get YouTube back when you sit on that toilet”. I know it’s harsh. I will try a gentler method.

Get changed then you have youtube is fine
Simple.
Cant they use a reward system at school ?
Tokens leading to xxxx.