What therapy for ASD should I go for?

[PeachPumpkin]

I have a 5 year old who is severely affected by Autism. She doesn’t really speak to communicate, appears to have poor understanding, still in nappies etc. An EHCP is in place and she gets SALT and OT through that. Im looking to get her some therapy privately. Does anyone have any thoughts on what might be a good choice?

I’ve been looking at ABA. I know it’s controversial, but I’m so wanting to see a lot of progress. Or should I go for more SALT? Maybe more OT, one who specialises in sensory integration? I’m not sure what to do for the best but I feel that I need to do something. I’m keen to hear opinions and experiences. Thanks.

Thank you very much. I really appreciate your help.

Do you want to talk about how to potty train or will it be annoying? I know every blasted person will think they know how to do it and that you just need to persevere (which obviously you do but honestly they are SO distressing sometimes).

I’m happy to accept all and any advice, thanks! My biggest issue is getting her to sit on the toilet. She refuses to even try sitting on it. I’ve bought a nice padded seat with build in steps that’s very stable. It feels impossible to get her toilet trained if she won’t even sit!

A strange suggestion, but have you tried a paediatric commode?

No I haven’t and I haven’t even heard of that, but I will look into it. Thanks for the suggestion.

@timetobegin do you have potty training advice that worked for your DS? If so do you mind me DMing you? Our DS is five and we just can't seem to crack it, despite him having most of the skills required. What you've said about Montessori approaches of letting them discover things themselves sounds like it could be up our street (DS is ASD, suspected ADHD and PDA - smart but super strong willed!! It feels like there's a fear/sensory issue/control issue that is getting in our way, rather than lack of understanding)

My thoughts on potty training are that it’s one of those things like “eating” that carries a lot more shame/embarrassment/upset than it should.

Primarily children will potty train when their core muscles are strong enough and it’s better for them. So exercise particularly things like swimming and trampoline to strengthen is a good idea. I’m not a great believer in “prizes” beyond saying “that was exactly the right thing” and then saying aloud what happened and why it’s good eg”yay we don’t have to change your nappy so you can go back and play straight away” or conversely “oh I wish you’d done it in the loo”, and “then we would have had time to play XXX before we left. Come on let’s clean you up”. Make accidents and nappies inconvenient and toilet use really advantageous.
The timing thing is about really close observation. Use your phone to note when liquids go in and when they come out (and poos obv). You are likely to find a pattern. Use that data to work out when there’s likely to be action. For example if you know a large glass of water or bottle of milk makes them pee 20 mins later then give that 15 mins before bathtime and sit them on the loo while you run the bath. Consider it a science and award yourself bonuses for success (DP could try too). Once it’s worked a few times you are likely to be successful fairly quickly.

@timetobegin i came on here specifically to say please do share your toileting stories!! Then read your last post. Reading your last 2 sentences though, what is ‘success’… your dc weeing or pooing on the toilet or actually in the absence of any intervention from the parent taking themselves/ signing or whatever to initiate, themselves, going to the toilet? And then going?

we are slightly different to the OP in that DS will use the toilet and yes we can observe a pattern. But he’s never truly ‘trained’ because if I stayed schtum all day he would repeatedly have accidents and not really acknowledge that anything had happened. Equally he’s not that bothered by a ‘oh dear’ or a ‘well done!’.

I think that’s why a lot of people go for strong rewards because a lot of kids don’t really care either way and if there is a way to change that ‘mindset’ then I’d love to know!

Re accidents being inconvenient my DS loves chilling in the toilet, a bit of one to one time. His play interests are limited so hanging out longer in there to be sorted out is no great shakes for him.

its really really hard.

@carriebradshawwithlessshoes I know we have ‘spoken’ about it before, but I don’t think regularly taking DC at set times/intervals/following a certain amount of time since consuming food/drink translates to fully toilet trained for all. Teen DS1 is not toilet trained. No amount of taking DS regularly, observation, bribes, rewards, positive reinforcement, ignoring, making changing inconvenient… worked.

Hi @BrightYellowTrain yes we have and hello!

so if you leave DS1 to his own devices all day what would happen? Would he have accidents and tell you? Be bothered? Just carry on? I know he has some physical issues so maybe the reasons for him not being fully there are diff to DS.? How do you see yourself cracking it? Or don’t you?

my view (with many things with our kids) is that for nt kids (of which I have one) weeding pants and so on is a cause of immortal embarrassment. I recall a mum telling me the lengths her 4 year old DD had gone to at school when she had wet herself because she was so embarrassed … including sneaking out to get her bag, dry pants, changing them then stuffing wet pants in with her lunch box whilst desperately hoping the teacher didn’t know.

without that inbuilt and appropriate reaction, can toileting ever really be cracked? I’m interested to know. And can that ‘reaction’ be taught? Because imo that’s the crux of it (and many, many other things.) DS doesn’t have it.

@BrightYellowTrain i think you said your DS is embarrassed… which is ‘good’?! Mine couldn’t care less!!!

Mine doesn’t get embarrassed either. I’m focussing at the moment on everything around toilet training- the washing hands part, getting dressed etc.

To try and help a bit with your original question @PeachPumpkin and to put forward a probably unpopular view of ABA (coming from someone who has tried it fairly extensively off and on) if you can afford it I would give it a try. It works really well for some kids. The downsides in my experience are:

1. its not widely available, there are centres in Leeds and London I’m aware of but otherwise trying to get a programme in place is really hard. You need to find a Bcba and to get a good one is more luck than judgement. They then usually say you need to find your own tutor(s) so again you are hunting out people you don’t really know much about to be ‘trained’ up by the bcba, it’s a minefield a v different from finding a SALT or OT for eg
2. it is a bloody fortune for all of this with uncertainty as to what you will get for your money
3. its hugely dependent on the profile of your child and works best imo for children who are very driven, strong willed, who will work really hard for a ‘motivator.’ Where you have a chilled out, doesn’t give a shit about most things child like my DS there is putting it bluntly nothing they can bribe them with. My DS used to look at the motivators his tutor had for him, grin, and close his eyes. Often she wouldn’t take her money from us because she said she was babysitting not tutoring. With kids with other profiles though it may be different.

but this is all the great unknown. A short trial may flush out if it’s for you (or not.)

@carriebradshawwithlessshoes DS1 can’t tell us he needs the toilet. He can’t recognise when he needs to go. Let alone communicate that. And he isn’t able to go of his own accord. He has a complex mix of physical, psychological, developmental and medical needs. It makes unpicking things difficult.

DS1 hates having accidents. After he has had an accident, he becomes upset, but not because he has had an accident or because of embarrassment, but because of the sensory feel iyswim. DS would be equally distressed if he e.g. got paint on his hand or water on his leg (oh bath time is a nightmare and don't even think about a shower) or when wearing* *incontinence slips/pants… it is the sensory feel that distresses him rather than having an accident itself.

We/HCPs don’t see DS toilet training. Previously some HCPs hoped he would, but that has tailed off. Last year, DS had an operation to insert a button device into his bladder to make managing his urinary incontinence easier. It has made things so much easier. This means he doesn’t have many urinary accidents now. Although sometimes there is some urine bypass.

Just to chime in on the two points (apologies for derailing the thread into one on potty training!) Our DS has a specific issue with using the toilet, and will hold it literally all day if he's faced with that or using the toilet, so we at least have a more isolated issue to deal with. I know it's more complicated than stubbornnes, but to the casual observer it's a stubborn insistance - due to fear, sensory issues or wanting to stick with nappies - that we somehow need to help him through. I'm just starting with some proper OT support and hoping to get some good advice on this.

Also with ABA, our experience was also a lot more mixed than "it's all good" or "it's all bad" as well. ABA techniques get used with all children in all sorts of different contexts (how else do you teach them to say please and thank you??) but when it's used to extinquish stims, force a child to do something that's distressing for them, or just mindlessly go through the motions without any actual learning, that's obviously not what you want. I didn't find we were ever put in that position because we got lucky with a great BCBA who focused on core skills and not stims or eye contact when DS was young.

However, by 3yo DS was so self-directed and no longer motivated to follow ABA techniques no matter how much we praised him that we had to move on to a more child-led, interest-led approach (which has been more successful). I don't regret doing ABA though as we stuck with it for as long as DS enjoyed it, and we learned a LOT along the way thanks to the BCBA. She was the first person to give us any useful info and signposting to other resources (on language development, sensory processing) at a time when statutory supports were either non-exisitent, at the end of a year-long waiting list, or totally useless when we did engage with them.

I'd say it's worth a shot to at least find out, and just be ready for the possibility you may end up piecing together an ever changing patchwork of approaches as you go along!

In answer to “what is success” I’d say there are stages. It’s a joy not to need nappies, so getting it in the toilet all the time is success, similarly not needing prompting, not needing help with clothing or wiping, not pissing on the seat, reliably washing hands, shutting the door, etc etc. At home the only input I have to ds’s toileting now is he occasionally blocks the toilet (he’s now late teens). Five years ago he’d have needed help with an upset tummy or tricky buttons and modesty, and five years before that needed help with wiping etc. He can now use a disabled loo out and about but not the gents. Embarrassment isn’t part of our toolkit at all because ds has only very very recently gained any understanding of that sort of thing.

It really is helpful to increase fitness, particularly core strength. Hypermobility or generally weak muscles make it all much harder. The whole “well done” or the opposite is helpful only if you use it as a way of explaining why it was good/bad which while glaringly obvious to you isn’t necessarily to your child. People ONLY change behaviour if it is easier or better for them. It’s a way of thinking that is really helpful when planning. Instead of pushing towards your desired outcome, let it pull.

@Scratchybaby You haven’t derailed at all, thank you for your input.

@timetobegin I agree with you on ‘let it pull’, but I’m struggling to work out how to make the toilet attractive to her. At the moment. I think nappies are a lovely convenience. She doesn’t have to break away from what she’s doing to go to the loo. Doesn’t have to get up when she’s all snuggled in bed. She’s not a child who can be bribed and she doesn’t care what anyone thinks. I’m confident her muscle tone is fine- if anything she’s abnormally strong. I need to figure out how to make using the toilet attractive to her. I think then she would sit in the toilet. I have a suspicion that she’s refusing to sit on it as she knows it’s leading to being toilet trained.

Thank you @carriebradshawwithlessshoes . Not sure how I’ve only just noticed your post! i am in London, so that’s a start! Actually I’m struggling to know who is good. There are various companies but I’ve no idea who is worth going for. Another thing I’ve found is that all I’ve contacted so far want to conduct a very expensive assessment first (£1k+). The sessions after that seem reasonable in comparison. So I feel that I need to be as sure as possible and choose well! Your point 3 was interesting. My child is very strong willed but can’t be bribed at all. If she doesn’t want to do something… forget it.

@timetobegin so working on your timescale DS was out of pull ups at 8ish? Was he then taking himself/ telling you or were you on your timetable of taking him then? I assume you had him out of pull ups and in pants from being v young?

the problem is that a timetable isn’t foolproof and I don’t trust him not to have an accident when out and about. So really unsure how to move forward. And yes, sorry for toileting derail. I have asked these qus before on other threads but never been able to move past the ‘take him on a timetable which works 80pc of the time so I dare not move to full pants’ stage.

@PeachPumpkin its not so much the not wanting to do something it’s about for her the strength of the reward (this being something that she doesn’t get otherwise in her life.) on a weigh scale the reward/ motivator weighs more than the desire not to want to do something. That’s it in a nutshell. It’s in her interests because she gets that ‘golden nugget.’ For DS there was no golden nugget.

Our old tutor used to put it quite well. She would say ‘for this to work you need to give me a £100 note as a motivator to use. What you are giving me is lots of 20/10/2p coins.’ 🤣

@PeachPumpkin you can make the toilet more attractive and make the nappy change less attractive. It’s impossible for me to guess what that would look like for your child (and I really would articulate it for them every time). It could be after you sit on the toilet you get to do something desirable, it could be something on the toilet wall can be used while peeing (eg spinners, sand pics, bubble machine). Nappy changing might be less fun because you miss something or it’s less comfy than pants or there isn’t a favourite character on nappies.

@carriebradshawwithlessshoes ds was out of nappies in the day before four and at night fairly soon after. He struggles with clothes (and likes being naked) so needed support to be covered coming out for a looooong time. He has very hypermobile hands that hurt so wiping took longer and he didn’t get the hygiene rules for a long time so needed supervision.

@timetobegin thsts impressive… 4!! Very nt age! So at that age (leaving aside the nakedness) were you confident taking him out that just working on your timetable he wouldnt have an accident? I just can’t make that leap of faith cos I know he would! I feel he needs to be at the stage of telling me before I dare risk it and that feels a long way off.

Yes I think so, but I had (a lot) of other small children so our trips were always quite child friendly.