ABA, RDI, or just see the hospital SALT more often?

[letsgooutstiiiiiiide]

DS is 2.5, on the diagnostic pathway for ASD. He is hyper-verbal, has a stunning memory, and seems to have pretty complete understanding of what he says and hears. He is terrible at anything requiring problem-solving, perseverance or sequencing; socially he is very easily overwhelmed and shuts down; he's incredibly stubborn/anxious about not trying things.

He has just started Montessori nursery 2 afternoons a week. Unsurprisingly he isn't engaging with the children there, will only engage with the teachers if they talk to him about heating systems/drains/fans, and will only engage with the activities if I get them for him, talk him through them, and put them away. He spends a lot of time wandering around by himself outside. He doesn't really have the skills to cope there. The teachers are nice and tactful, but obviously they're running a business so it's in their interest to have him stay. He says he likes it, but doesn't seem to enjoy it much when he's there.

He has also recently started SALT at the hospital's child development centre, where the therapist works on incredibly basic aspects of turn-taking and decision-making, gradually building up his inclination to engage with her. He loves it and keeps wanting to go back.

I would like him to keep going to Montessori as I am exhausted and have no time away from him otherwise - time i'm using to read up on therapies, autism etc. However, I think he needs to quit Montessori and do more therapy. The hospital's general stance is that children should be pushed into mainstream education as much as possible, but I think that he's gaining nothing but stress from going to nursery at the moment.

We have ISAAD ABA locally, and RDI available by skype. Both seem to be primarily money-making exercises and the people who run them (figuratively) scream undertrained pseudoscience quackery when you talk to them. Our lovely hospital SALT also works in private practice, so we could just try to do a few extra hours a week with her. That would be about 150 quid a week; RDI would be about 75 per week; ABA would be insanely expensive, around 50,000 per year. There's zero local funding for any of this. We could just afford maybe 2 years of ABA but it would completely wipe out all our retirement savings.

We have no support whatsoever (actively unsupportive family on both sides). I am at the end of my rope after 2.5 years of practically no sleep and dealing with watching DS regress. DH is very tolerant and helpful but is an academic in a sh*tty university who have basically just sacked all their support staff and dumped everything on the academics and then told them that they've got 5 years til the academic job cuts start for anyone who can't handle it. We're more or less stuck where we are (deepest NZ) as DH has no desire to move and my career fell apart years ago.

We could move back to the UK. DS and DH are UK citizens. But that's not necessarily going to easily get DS into therapy or specialist school or whatever.

What the f* do we do? Which therapy or none?

How frequently does he see the SALT at the hospital now?

When you say children get pushed to mainstream schools there, are they given additional support to do so, like 1:1 TA support?

It sounds like he needs support in the nursery to help him engage more and manage, and encourage, his interactions with the other children, do they have a SENco equivalent? In NZ do they have any funding for SEN pupils that can be accessed by the nursery to provide him with 1:1 support? Here they can apply for SENIF funding, which is tiered based on need, or an EHCP.

Personally I would keep him in the nursery if he is happy, getting used to being around other children and to its rhythm and routines is preparation he will need for school. If he was very unhappy it might be a different matter. Plus, as you say, it gives you a break. It’s also only two afternoons a week so plenty of time for therapy too should you wish to do more.

Do either of the therapies that you’ve mentioned offer a taster or trial period? I would see which one speaks most to you and give it a go, if you don’t like it, or it doesn’t seem to be helping, you will be able to stop at any time. Can you find any Facebook community groups for either of them where you can ‘speak’ to other parents?

Hi there.

Our DD is also very verbal autistic. She is 5 now and has nice friends at school, despite avoiding other children at 2.5, so a lot can change.

If he loves the SALT I would carry on with it. Engagement/enjoyment is half the battle, and turn taking and sequencing are really important building blocks.

I'm deeply conflicted about ABA. I understand and agree with all the terrible things said about it and certainly it can be abused and can have negative outcomes. On the other hand, at its core behaviouralism also covers me having a fitbit, or parents using a star chart or "I'll give you an ice-cream if XXXX". I mean, I'm not saying any of this is ideal but most parents use at least some of these "behavioural" techniques.

The "middle path" we trod was to use a distance ABA provider (we used Beam who are based in the UK, but it's all done by Skype so may be possible to do even from the other side of the world). It gives us a Skype video call every 2 weeks or so to discuss whatever we are working on, plus they will reply to e-mails inbetween if stuff crops up you want advice on. They have online software for measuring trials and all that very ABA-ey stuff but we never felt that was a very good fit for us so we don't use it. They still produce "targets" like traditional ABA, which get updated every few months: we have obviously avoided any targets that restrict her stims or interests, but we have worked on things like conversations, being able to speak to other children, being able to ask for help when she needs it, learning that making mistakes is OK, practical skills like dressing and being more independent with her morning and bedtime routine, managing emotions etc. They are good at knowing what is the developmentally appropriate "next step" from where she is, and also on breaking things down into tiny steps that are more manageable (like physio in that regard).

Sometimes I feel it is really just reflecting back the things we say ourselves, but they have come up with some good ideas of their own (like doing a diary in the evening to talk about things she did that were new and she enjoyed - to remind her that she often does like new things when she tries them - and to talk about things that were tricky and how we could all handle them better in future, doing some video role-playing on why it's important to answer questions, and making mistakes ourselves on purpose to show her that it's OK to make mistakes as she used to get very anxious about that). They've also been able to recommend good books on emotions, friendships, etc. Also good games for practising turn taking that are also engaging (like Pop Up Pirate). And also they have good ideas on breaking down tough things into incredibly small steps (e.g. just reflecting back "hello" with "hello" if a kid talked to her in the playground, then being able to answer name or age, then asking the same back). Plus I've found it really reassuring to talk to somebody who "gets" autism about things we are trying, things DD is struggling with, and it is a way to record developments and remind yourself that the thing you are worrying about now will be something different in 6 months time.

Anyway, it may not be for you, but it's a bit more manageable financially (our service is £250/month) and means you aren't trying to navigate everything by yourself. They also have more intensive packages where you talk to them more often. And if you went the route of hiring ABA therapists on top they would help manage all that (but personally we never wanted anybody with DD other than us and her nursery/school teachers and TAs - doing "sit at the table" type ABA just felt too intense and too much like hard work for a very little kid - we want her to play and have fun and express herself in all her quirky glory!).

Also might be worth reading up on PDA parenting techniques? Basically it's about removing demands to manage anxiety.

FWIW I've found all that stuff easier as DD got older. If she's getting upset about doing something that needs to be done we can now say to her "well, what's your solution?" and as long as we give her enough time we can usually negotiate something that gets everybody's needs met. At 2.5 she couldn't really explain what was bothering her or why she didn't want to do the things we wanted her to but now she can (possibly not in the middle of being upset - but at least later, and then we can do better next time). She's also able to come up with plans together with us to manage situations we know in advance she might find a bit overwhelming. Just the fact that if I say "we're going in 10 minutes" she now has some idea what 10 minutes is/feels like makes life easier.

Thankyou for all this!

Slightly more positive outlook now. Turns out the ABA people here typically only do 10 hours per week face to face and that they are very willing to tailor therapy to the individual rather than having set ideas of stages that have to be gone through. Also that they are paired with a charity that will fund 50-100% of the therapy (in exchange for fundraising activities).

Our health visitor suggested keeping him in Montessori and finding a 1:1 helper who could continue with him to school. If we can find one, that'd be amazing, even if we had to pay for it ourselves. There is some government funding, though usually not very much.

Hello mum

I was wondering if you finally went through RDI ?