Do you ever have times when you question whether what you're doing is having any effect at all?

[sphil]

Am going through a very down period about DS2 atm and need some wise words. Bear with me - this is likely to be a long one...

As some of you know, we're doing an ABA/VB programme with DS2 at home (about 18 hours a week). Within the programme - ie when he's at the table in the playroom - he's making good progress. But the amount of stuff he learns in there that he then uses in the wider environment is tiny. We seem to have been stuck at the single word request level for ages - attempts to get him to use two words have largely failed so far. He just uses the minimum amount of speech to get what he wants and isn't in the slightest bit interested in doing more. He resists anything outside the playroom that smacks of 'testing' - even though he's perfectly happy to work for long periods at the table during programme time. And I've just started thinking - what is the point of him knowing 200 names of animals, foods, vehicles etc if he never uses them in real life? We do quite a bit of Natural Environment Training in our programme (but maybe not enough or we're doing it wrong?) Our supervisor at Growing Minds seems to think it's a bit early for spontaneous comments atm and we should concentrate on requests. But DS2 only likes a handful of things, he can ask for them all already and so we're stuck. It's exactly the point we got to in PECS last year. It's making me wonder whether I'm too stuck on speech and we should be focusing more on other things.

I suppose, if I'm really honest, I've been guilty of a secret hope that DS2 would be one of those children who would make really rapid progress with ABA - even 'recover' . And despite the fact that he's come on a long way in the last ten months the fact remains that he is still severely autistic. That doesn't change, iyswim. He can 'know' lots of stuff but he's still autistic. It doesn't help that the severity is hidden from most people because he's so compliant, cheerful and flexible. When I take him into m/s once a week he's better behaved than many of the children in Reception - but he can't do ANYTHING that they can do.

Bugger bugger bugger

He's the guy who 'invented' it ancientmiddlemum so its got loads of resources. It's a good place to look and get an idea of whether it will work for your child. My friend is really pleased with the progress her son is making using it (having done ABA then VB) - but she also agrees that it wouldn't be helpful for ds1 at this stage.

hope you find a way forward Sphil with the stuff that's been suggested via Vince Carbone. Donna Williams, and an author with ASD Caesial (?sp) Mor that she interviews both started speaking rather later than 5.

Saker - I've always been interested in RDI as you know but feel pretty commited to Growing Minds (despite the OP!) They are RDI fans as well but would always take an eclectic approach - and this is what attracted them to me in the first place, as I agree with Electra that it's important not to accept one approach unquestioningly (not that I'm suggesting you do btw!) As Yurt says, GM would look to incorporate RDI into our existing programme, so it's interesting that you say you don't think it can be combined with ABA/VB - I'm keen to know why.

I've been thinking about your list. DS2 can now share an experience by smiling/laughing, can borrow our perspective in certain situations (eg he can tease, he's soothed by us) he can coordinate physically (walk with us) but only minimally verbally (we can have a short conversational exchange about something he wants or doesn't want) but probably none of the others yet (although he can respond flexibly in a non-verbal way, if that makes sense!) And I would say (and actually this is cheering me up hugely as I type this) that these things have been learnt since we started with GM. The problem I have with the latter part of your list is that I don't see how a child could do any of these without being able to talk - and I know that this is an old argument that we've been round before .

Electra - one of my tutors is doing clicker training with a new child she's taken on, so will ask her about it. I've counted DS2's mands using a clicker before - but it's more than just that isn't it?

Blimey - I started that last post after Saker's 16.20 post - a lot of people have posted since then! Are your DCs dinners burning like mine?

Actually my friend doing RDI also says you can't combine RDI with VB, although we looked at some of the videos together and thought there was some stuff we could incorporate into ds1's programme. That may be because ds1's programme is mainly working on literacy and academics atm so you can kind of combine anything with that. Not sure.

ONe thing that put her off RDI was that they don;t like you using tutors, but she does anyway and its been fine.

Sphil

On the list of things I gave - they could all be non-verbal - for example sharing experiences can be done entirely through facial expression, gesture etc, borrowing your perspective would be something like looking across the room at you as a man in tiger costume approaches - if you are smiling and nodding, then the child would know it's alright. Co-ordination thing could be entirely physical - so if you bang on a drum, the child bangs on a drum. You stop, they stop - there's a good video on the RDI dvd with Neeley (or whatever his name is ) having his drink at the same time as his dad - his dad picks up his mug and sips, then he does. His dad puts it down, then he does - (there is no way Ds2 would do something like that, he would just have his drink when he felt like it). Reflecting on past experience and anticipating future - do they learn from experiences that have positive/ negative results - to repeat or avoid them, do they understand consequences - again can be demonstrated by actions rather than words.

With the flexibility thing - like you I would say Ds2 is quite flexible compared to some autistic children in that he doesn't go into meltdown because I give him a different cup at breakfast or something like that, however, it's also to do with understanding there are different ways to respond to the same situation, different answers to the same question. I do think this is harder to determine in non-verbal children.

Will get back to you on why you can't combine RDI and ABA but also have dinner and am woefully neglecting the children in spite of all my fine talk on here

In that case DS2 can do all of them - the coordination one only if we expressly ask him to 'copy me' or 'follow me' though. He does imitate spontaneously now but his executive function difficulties mean that he can't follow quick actions iyswim - so he couldn't keep up with the drum banging example.

Yurt - will send you some video - doing some atm for GM. Would be good to be in print!

Saker - DS1 has just asked DH (who's doing all the washing up as our dishwasher has just broken) to get his pudding for him 'as Mummy's working'.

Sphil - I know - I've just told Ds1 that he can't spend all day staring at a screen upon his request to watch TV then play football games on the computer .

I'm impressed that your Ds2 can do all that stuff - I'm not saying this sarcastically, but in RDI terms that would define him as neurotypical - what would you say that he can or can't do that makes him autistic?

he he - will just butt into say this is what my PhD about (partly)

unexpected competence because interactions take place collaboratively (god you can tell I'm a social scientist now can't you?) On a slightly more theoretical point most of the literature relating to autism is on high functioning/AS. I think the issues in lower communicating children are often less about 'wanting' to socialise etc and more about being able to initiate movements without prompts, big executive function/dyspraxia problems. So for example one study I'm planning is on severely autistic children teasing. Totally unexpected as the child needs to 'do' quite a bit of analysis to carry off a tease (including posses a certain amount of theory of mind) but tease some can do.

It relates to the stuff I was talking about last night about non verbal children often being auditory learners- I'll dig it out tonight as I can't remember it.

DS1 and ds3 are playing beautifully as I type this- they are chasing each other, and teasing each other. I should video it really. And ds1 totally understands the interactions.

yurt - About what defines austism?

Tbh, I think that by giving examples I have limited what those things mean - obviously there's many ways in which they can be expressed and a NT child would do most of them - for example, can they share experiences with you might also mean do they run to you to show you their picture after school, do they point out stuff, do they want you to sit with them to watch a favourite TV program. Even something like the smiling/laughing thing can somehow be different in a NT child and an autistic child - with NT Ds1 sometimes if we are playing something like catching a ball, he will just look at me and smile because of the pleasure of doing it with me, not because I am trying to make him laugh. Although we smile and laugh with Ds2 it is not usually in quite the same way - more of us entertaining him than a mutual pleasure, although this is starting to change.

Sorry that first question was in response to the post before the last one.

I meant to write that as I was commenting on your list Saker - DS2 can do all those things but not to anything like the level or range of an NT child of his age. I suppose his most autistic traits are

1. His speech delay
2. His stimming - v pervasive atm. Lots of involuntary noises and jerky movements rather than anything repetitive.
3. His delay in play skills - he loves playing with people but not with toys. And his play with people is that of a much younger child, ie mainly physical (though we did have a major moment the other night when he played hide and seek for a short time with DS1).

4.The fact that all those things I listed are confined atm to family and ABA tutors - he doesn't have much of a wider social sense at all. At school he seems much more severely autistic than at home.

If you read stuff by severely autistic non verbal adults/children who can write they commonly seem to say that their problem isn't one of not knowing how to interact or not wanting to it's of not being able to- often because of movement difficulties/initation difficulties. The problem of course if you can't interact easily is that you don't get access to lots of co-regulated interactions which is how things like social sense/theory of mind etc fully develop.

I know far less about HFA, but I get the impression the difficulties that are preventing social interaction are different.

Just wanted to add ANCIENTMIDDLEAGEDMUM if you want to borrow my rdi dvd email me on [email protected] We do rdi with ds1 by the way.

Nothing to add to the actual thread as I'm I find it hard to grasp a lot of the concepts you're all taking about.

Sorry Ancientmiddleagedmum (ooh I think you should change your name I feel like I'm being really rude calling you that!) - I hadn't forgotten you, I get sidetracked too easily.

If you can I would recommend going to the 2-day workshop in London in May to find out more about RDI - I think details are on the Connections Center site. Steve Gutstein is a really good speaker and it all seems really simple when he explains it (it just gets muddled up in my head later on ). Tbh the book is not that helpful anymore - it is quite out of date and sort of gives the impression that RDI is a set of exercises whereas it has moved on a lot now.

In terms of simple exercises - it's quite hard to say - most people doing RDI sign up with a consultant and they assess the child and where they are at, and set objectives and things to do accordingly. However more general things you can do -
(1) when talking make most of your language declarative, not imperative - ie try to avoid saying things that require a set answer such as "what do you want for breakfast?", "where's your shoes?" and instead use experience sharing type of language "I'm so hungry, I think I'll have toast for breakfast", "okay I need to find my shoes ready to go out". Because they often don't interact well, autistic children tend to be subjected to a lot of questions as people try to get a response from them and often they feel there is a right and wrong answer even when it is a subjective type of question.
(2) try to reduce the amount of actual talking you do in general, emphasise gesture, facial expression, tone of voice and body language. Slow everything down and give him a chance to process it.
(3) rather than work on eye contact specifically, do things to emphasise your face - for example, wear a silly hat at breakfast, talk to your son through a tube, put his hands up to cup your face.
I hope that helps a bit. I would offer to lend my dvd but have promised it to someone else but if you can't get to the 2day workshop it would be worth borrowing lucklady's dvd, although the workshop will be most up to date.

Yurt - it seems to me that many autistic children on all areas of the spectrum want to interact. The reasons stopping them may be varied but the research shows that it results in the same core deficits and RDI aims to address those rather than the causes of them.

I think many people with autistic children say "Ah but he can do such and such" but you often find that it is not carried through or generalised in such a way that it really has any impact on their life in general. Also it's often very much on their own terms - so they might tease, but only when they want to and it can be with something totally inappropriate that is actually really dangerous, or they might play with a sibling but in fact on closer analysis you find that the sibling is doing a lot more of the work to keep the game on track (and a non-sibling almost certainly wouldn't do this).

But if the core problem is to do with being able to respond on demand on time (as I think it is in ds1's case) then something that addresses that first (such as fast trials) is going to do more. If you don't somehow practice that ability then they're still not going to be able to initiate the necessary motor movements. Fast trials have really helped to organise ds1.

Take imitation. Once ds1 had been taught to imitate it totally changed the way he interacted. Within 2 months of him imitating he was basing his behaviour on the behaviour of others around him (which was something that I had noted was very different about him vs NT kids- before he didn't understand that other people's behaviour could be relevant to him- I guess he had a very poor sense of self). But he did need to be taught to imitate, and then as soon as it came that monitoring of others followed. My RDI friend was surprised as her son has been imitating for years but has not yet started to monitor other people (which is partly why she's doing RDI).

I've spent quite a bit of time with my RDI friend discussing the differences between our children. They're like opposites. She is a big fan of RDI but actually rang me to tell me that she'd been thinking about it and thought that RDI wouldn't help ds1 because his problems were so different from her son's.

Okay, me still - why you can't do ABA and RDI together.

ABA seems to be more about teaching "static and discrete skills" so things like learning words, learning to count. RDI concentrates on dynamic skills such as problem solving, thinking flexibly, hypothetical thinking etc

As I understand it ABA works on the basis that you teach the child a discrete skill by rewarding them. RDI works on the principle of "guided participation" which is based on the neurotypical model of learning - the parent as the teacher and guide. The parent and child do things together, the parent provides the child with a meaningful role in a structured way so they can succeed, and as appropriate stretches the boundaries a little more each time to challenge the child a little further. It sounds complicated but it can be something very simple like putting socks in a drawer.

RDI should go on throughout the day whenever an opportunity arises taking the guided participation approach. Obviously this is not compatible with a child doing ABA type table top activities for several hours a day.

In RDI language should be kept as declarative as possible (ie experience sharing not lots of questions) - I might be wrong about this never having seen ABA in action but I imagine a fair number of questions and tests are involved.

I think ABA might specifically work on something like eye contact. RDI would feel that you can't teach a child when to make eye contact appropriately, that for it to be at all natural that it has to develop in a NT way, so you couldn't be teaching it on a reward system one minute and then not teaching it the next IYSWIM.

I probably haven't explained it well again but I think the key is in the two totally different teaching systems which work on totally opposite principles.

I know its not the same, but I have a child with CP. He attends Conductive Education sessions daily (its a system of learning that concentrates on movement). We find that it doesn't seem to make much difference in term time, but in holidays he comes on leaps and bounds. Its as though his brain is thinking 'Oh, I can have a rest now and process what I've learned'. Maybe he needs a little rest? (only an idea)

Actually Nat1H you may have a point there - he was on very good form over Christmas. He's also about to change schools so is doing two mornings a week at m/s in addition to 3 mornings at special + home programme every afternoon. So may well be tired!

Saker - thanks for explaining that. I think maybe GM uses a slightly different model of ABA. For example, rather than asking 'What's this?' when showing DS2 an object or picture we're encouraged to say 'Oh, look....' in a very excited, animated way and wait for him to supply the label. The ways to encourage eye contact sound very similar to the ones described to us on the GM course - doing wacky things to get your child to look. However, I do think that we could be using much more declarative language with DS2 and I also think our Natural Environment Training needs refining.

This thread has really cheered me up btw. It's helped me to focus on what DS2 CAN do but also made me think about ways we can tweak things to make them more effective.

I'm glad you're feeling better Sphil - it sounds like your Ds2 is doing well. It's always depressing making comparisons to NT children and you can lose sight of what you have achieved.

Yurt - well RDI would always say treat co-existing disorders so there is no reason why you can't address motor stuff at the same time. I really have to disagree that RDI wouldn't be suitable for your Ds1. If he has some of the early skills in place already you would just come in further down the line and probably make more rapid progress. Obviously I don't know him personally but I have heard a lot about him on this board and I can't see why it wouldn't help him (And your friend said on the RDI UK board that she might convert you yet so she's with me on this one really .). However I'm not trying to convince you should do it - obviously you are happy with what you are doing and I'm sure there's other ways of doing things.

Now he has some imitation I do think he could actually benefit from RDI, but I really don't see that he could have before then. My main problem with it is the way its packaged and sold. Gustein's research is on high functioning children and I don't think he makes that clear at all. I really don't think he addresses language issues as well. From what I've ween when I looked into trying to use it the language and vocab just had to develop naturally which is never going to happen. I have the same complaint about VB btw.

A big problem (from my POV) is that there is very very little research on children/adults who are like ds1. So the research on hugh functioning autism (who are the one's who have been used to describe the core deficits) is applied lock stock and barrel to those who are low functioning and I don't think it's always appropriate- especially in older children who remain non-verbal.

TBH though we use our home programme to teach literacy now so that's not going to happen via RDI.

I do think RDI can be great for certain children, I've recommended it to a friend for her dd several times. But I don't think its right for ds1 and I have revisited it 3 times now and looked at it 3 times and just don't see how it can be used to teach him much at all.