RDI workshop and activities for non-verbal kids - Jimjams and others

[Saker]

We are currently attending the 4-day RDI (relationship development intervention) workshop this week. We have done three days out of four and it is really good. Everything about the technique makes loads of sense and we have seen a lot of video clips etc of it in action and the positive effects it can have.

I know there has been some discussion about whether it is suitable for non-verbal children and severely autistic children and I wanted to report back what we have seen. Dr Gutstein (whose brainchild it is) is adamant that it is actually easier to work with non-verbal children rather than verbal ones in the first instance because the language doesn’t get in the way or distract them. The sort of activities you start off with are similar for both verbal and non-verbal kids, just tailored more to the individual child. They are very simple “regulation” activities which help the child to see a pattern into which you start to introduce variations. For example – putting laundry into the laundry basket – you might do this with your child hand over hand making a different noise every time you do it, inserting pauses at unexpected moments etc. Another child we saw on the video was pouring water into a bottle hand over hand with his mother. Basically you can do any activity that is simple enough for your child to succeed at - the activity itself isn't relevant but the idea is to give your child the feeling of competence and to learn to regulate their behaviour in response to yours. Oh it's hard to summarise everything we've seen and all the theory but it is very clear to me that it is no different for non-verbal or verbal children. They have moved way beyond the sort of activities described in the RDI book. I just wanted to feed this back for people who are interested.

ok I feel like I'm on a downer, but I don't see what makes that RDI. We do that sort of stuff anyway, and its worlds apart from the RDI that is described in the book and DVD. So how do you get from the sharing of pouring sand, the marching with hands (and swinging ds1 loves being swung between us) to the stuff in the book. That's what I just can't see or get my head around.

What age are the non-verbal kids that have done RDI? (I know you won;t know this- but we can't afford RDI so I can't ask anyone official or hire a consultant!). Are they ones who are non-verbal but always going to speak, because it still seems to me that for a child as severe as my son they're just not going to make that leap that seems to be expected. DS1 actually isn't that fussed by change, it doesn't freak him that much as he's still pretty passive underneath it all. I said earlier he doesn't have any great likes, but as his clinical psych has said he doesn't have any great dislikes either. Some flashing lights, some new windows and a whole host of doors will satisfy him, but its hard to share interaction over a bunch of doors. He loves surprises (enjoys peek a boo as much as ds3) so all that sort of stuff can be done (and always has been-even before he was a baby). He's sociable, he;s not keen on children , but likes adults, but that doesn't help him talk or imitate or recognise other peoples actions and intentions.

I understand that children with high functioing autism are greatly challenged by everyday life, but they still have a massive whole host of skills that are completely lacking in my DS1, and other children as severe as him.

• I think that's the biggest advantage of ABA Socci- the child is taught - actively taught- something they can't just pick up - in an environment where they can learn- becuase they know its a room they learn in- and then you generalise. It's the only thing that has worked for us. DS1 does quite enjoy interacting at a basic level- with adults- but that's never taught him anything. He just doesn't learn anything from that.

Agree, Jimjams. I have a child like yours! ABA has been a way in to learning for my DD. PECS has been an invaluable form of communication when signing didn't work for her and spoken language is not emerging.My DD will enjoy spontaneous interaction. Monica, you know that a good ABA programme is not just about teaching a 'rote' behaviour?!

Sorry, meant to say, my DD does spontaneously interact with adults and her brother in a limited way

I agree ABA is fantastic way for a child to learn language, play, academic, intellectual, self help AND social skills but the point I was trying to make is that it's primary purpose is to "teach children how to learn". I agree JakB that a good programme like dd's including loads of other stuff like Speech and language anticipation games etc. is wonderful for an ASD child but I am not sure if all programmes are as holistic as yours?

It's fantastic to hear of children learning to generalise but this was where we really struggled with dd.

I think if a child is already spontaneously interacting is an excellent starting point for RDI and this would be the area that is focused and worked on.

The big positive about floor time for me would be that it seems to incorporate sensory/information processing and motor skills as a big part of the programme, RDI includes holistic treatment plan but not to the same extent as floortime. My only uncertainty about floortime for me however, would be that we would create an abnormal relationship and style of interaction with dd by always following her lead, I think that would give her too much unhealthy power, (which she already has) like many ASD children. I'm really interested to hear how you progress with this JJ I would love to know more about it.

I feel like I am banging my head against a brick wall a bit here - Forget the book! Throw the book away - the book does not contain a set of magic activities that constitute RDI. All the way through the program you choose and adapt activities that suit your child. You need never do an activity in the book or purchase a single bean bag chair.

Jimjams - there are opportunities to talk to people about RDI without paying any money. I have mentioned them before - you can join the online chat with the Connections centre on a Tues eve (you will have to get up in the middle of the night but if you were genuinely interested in doing it that would be worth it I guess) and then you can ask questions direct to Dr Sheely or Dr Gutstein. There was a UK chat which I posted about on here and I daresay there will be others in the future. There is an RDI-uk yahoo group and there are people well into RDI on there who could answer questions. There are several consultants in Britain now in training who I am sure would discuss it with you. So it's a bit unfair to imply that there is some air of secrecy about it all unless money changes hands.

The other thing I want to say is that I am not knocking ABA - I have never done it but it is clear it can be very effective. But doesn't that say even more for RDI that people who have done ABA then find they can go even further with RDI?

I am not trying to be controversial, I just felt enthusiastic and inspired about something I have been lucky enough to find out about through Monica and RnB on here and I wanted to spread the good word.

Well I went back and watched a bit of the RDI dvd this morning- and I think I have worked out WHY it doesn't work with children as severe as ds1.

It was the bit about referencing. Now funnily enough as Gustein was talking about referencing ds1 started to do his teasing pinching me. He was standing with his hand on my neck- looking straight into my eyes (not actually pinching me) and waiting for a response. In effect he was using me to see which way to go next. Now the problem is he doesn;t understand my response- he understands the words hands down, he understands the words no (and likes me to say them because he thinks its funny- if I don;t say them he'll start saying "ayown" (hands down) repeatedly. But if I get cross about something, or if I use a a stern voice, or a happy voice or whatever he doesn't uderstand that. He often checks out our response before doing things- usually he does it to see if we're going to shout or say no (all very funny), but he can't use it as a model or as an inctruction. We've often said one of the biggest problems we have with ds1 is letting him know when he's gone too far, because he just doesn't get it.

So it seems to me that asking a child like him to use me as a basis on which to base his behaviour and response, using me to model himself on- is like saying to an English speaking child "you must do exactly what that lady over there tells you do- exactly what she says" but the lady over there only speaks Chinese.

Monica- I would agree with that - but it depends what you are using it for. I'm using floortime only to extend ds1's playskills. He gets lots of teaching and therapy during the week, and we do do a bit of PECS in the time as well (so this morning we were doing shapes with boxes and chocolate buttons). For extending play I think it is good, stressfree (and I do use tangible rewards as well), so its a mix.

I have tried to ask these questions Saker, and I have followed the email groups and things for quite some time. I have yet to see someone using RDI successfully in a child like ds1. And the only response I've ever had is that it can be used with a non-verbal child, never how.

I will email connections though and ask about how you do RDI when your child doesn't actually accurately read anything that youur responses. He is good at sharing stuff with us (has just shown me a light, and earlier brought me some pictures of stairs), but I don't see how referencing can work if he can't understand our directions.

I have to say that emailing Jill Galinato has never been particularly useful to me for tangible answers to questions, so I don't know if you will get a good response from her. You would have more success on the chats though I appreciate it's not ideal having to wake up at that time. She is more sort of admin based. You could try talking to one of the British consultants though. There was a name and address of one posted on here recently I think.

I think a lot of autistic children don't read responses - isn't that part of what defines autism - poor non-verbal communication. Ds2 doesn't even understand what it means if I shake my head or nod at him and he's got quite a lot of language. The idea with RDI is that you go right back to the beginning and take them right through normal development but very slowly making sure they have got it at each stage. We didn't even cover referencing in the 4-day workshop, we are still at the stages before that, just getting your child to even look at you and notice you and realise that you are trying to communicate with them. I'm sorry I've probably not explained it very well - there's a lot of theory I'm still trying to get my head around. Steve Gutstein is clearly an extremely bright guy and his style is quite academic. I wish you could have seen the progress made by some of the children in the videos he showed us. The child they have worked with for the longest (8years) started off with 20 words at the age of 5. They showed us a video of him towards the end of the 8 years and he was great - at one point he stood in a sort of jokey sarcastic manner with his arms folded and said "well I'll just stand here all day then!" - so completely non-autistic.

I'm not trying to harass anyone else to do it - obviously everyone makes their own choices for their own child. In the second study they took children between 2 and 9 and found no correlation between age started and change in ados score. Equally no correlation between IQ of child and change in ados score. However I have heard other parents comment that it is easier with a younger child. Some people at the workshop were going to be working with teenagers and I know some adults are in programs.

RDI is quite structured - for even a simple activity like pouring water from one bottle to another you would have to think where you would do it, what the limits are, what your child could actually do successfully, whether you need to be physically connected to the child e.g. holding hands etc

As I say I have never done ABA so don't really know how it compares in terms of structure.

I think I'll post a question on the conections forum board. Thinking about it I think I've tried those sorts of questions before. I've been up a lot in the night recently- I won't get up specifically, but next time I'm doing a 3am I'll check the connections website for chat.

I don't know, I was quite excited about RDI at the beginning but I just don't think ds1 is ready for it. I can see that it would be useful for children who are high functioning as it adresses their core deficits, but it just doesn't seem to tackle ds1's biggest problems (language and imitation, which neurologically may well go together). The connections website does say that for a non-verbal severely auitistic child RDI is not enough (in FAQs I think) so maybe I shouldn't be expecting to be able to use much of it at the moment. It is a very expensive "add-on" though if it's not going to be the main therapy.

It is quite hard to "dabble" in - that was my original intention but I couldn't get going at all and I do think you need a consultant to make much progress. Although they didn't say this specifically at the workshop, I have read on the board that progress can be slow at the start for some children who are severely autistic. It's hard to make the decision to spend any money when you can't be sure if it will work for you or even if you have the energy and time to commit to it with two younger ones and your Ds1 in full time school.

The encouraging thing is that it can work for older children so it's not like you couldn't come back to it later. The number of consultants in the UK is bound to increase and they are already talking about doing more parent training etc so you could always just wait for more evidence and see how things pan out.

Ds2 can't imitate at all - so we will test out how much of a problem that is in RDI.

I'm sorry, but I've seen all this before. The next, greatest and latest thing with a few holes in it as far as my child is concerned (yes you Brighton girls, I mean VB!). As far as I can see it is a good next step or add-on after ABA if you have a young, severe/non-verbal child and possibly a start-up for a more hf/verbal child although it doesn't sound like nearly enough to me. There is no way this would have done anything for DS when he was first dx, I would have been mad to think it would, far from it. Even with his level of ASD we don't ABA him all the time now, all ABA programs I've ever seen become "Tommy's program" or "Billy's program" iyswim and include other things and wider experiences, that is what it is supposed to achieve. And, funnily enough, I do sometimes join his stims or copy them now but it would have meant nothing to him, he wouldn't have even noticed, when he was much younger. Now we can use it as a way to communicate and interact or simply for me to show him how silly it looks! It just isn't good enough for me that the person promoting and selling it is convincing. I've known so many former ABA tutors/professionals go into something else because they think its better or offers more, but they aren't parents making the decisions we have to and most of them end up out of the ASD world altogether. I wouldn't go by what they say or do I'm afraid.
SOrry if this post is annoying, that's just what I think about it.

Fair enough. I have thought about doing Floortime and ABA in the past and even tried things like cranial osteopathy which I would never have contemplated before I had a child with SN. RDI is the first thing that I have felt really had something in it but I am acutely aware that parents in our position are extremely susceptible and it is hard to judge neutrally when your child's future is at stake. It appeals to me because it is research-based and backed up with some evidence (although it needs more) which that is a lot more than most other treatments or therapies around. It may turn out to be disappointing but for us at this point it is something we feel has promise and we need to be able to give a good go at.

Did cranial help? It really cleared ds2's clogged up chest -that I didn't even realise was clogged up- but weird stuff- she told me it was all bunged up - I said I'd never seen any signs (coughing or anything) then that night ds2 sat up at midnight and choked up a load of thick green mucus!

Did bugger all for ds1 though!

Probably not, it's hard to say. He did seem to come at bit at the same time but then he makes jumps anyway from time to time and he had lots of other input so it's hard to say it was cranial osteopathy really. There was certainly no dramatic change. I didn't try for very long. Dh was very uncomfortable with it and I could see his point of view so in the end we decided to leave that one.

Davros I'm always interested in your posts :) I agree with the add on to ABA for lower functioning kids and start up for HF kids, I think RDI would be great for an add on for severe/non verbal kids in an ideal world,but unfortunately after using ABA most families have had to personally fund some of or all ABA and simply don't have a bottomless pit to invest in RDI. I am wondering if for those families floortime could be used as an initial alternative, if you could curb it from being a child lead programme like Jimjams is. I personally still need over 100 trackable objectives you are given with the RDA to know what I am working on is the correct objective at the correct time for dd, I wouldn't feel confident without this and my consultant of course, perhaps that's why the cost is so much more?

JJ how does your ds spontanously interact with adults. If you has referenced you (ie waiting for a response as you described) is it all physical interaction? what would he do if he wasn't reinforced? Would he just wonder off or try and reference for a reinforcement?how do you play peekaboo? I amjust wondering if there is anything you are already do that could be spotlighted and focused on like with RDI.

He's strange monica- he is severely autistic, but he also is a fantastic tease. So one of his favourite things is to go up to something he's not allowed to say touch, stand next to it, attract your attention then stand with his hand just not quite touching the forbidden object whilst looking straight into your eyes. Usually he wants you to say the normal phrase for the situation (so with the pinching if he;s standing next to me with his hands just almost not quite touching me he waits for "hands down"). Once he hears the normal phrase he just creases up laughing. If he gets no response he might touch the object - again whilst looking at you- maybe shouting "an" (no).

If I avoid saying the normal phrase (Whcih I guess is the reinforcement) then he;ll shout his approximation of it, looking cheeky and straight at you, he'll carry on shouting until you say something that he accepts.

Another example- today he went to gooseys- she's took him to the park. He ran to the gate and stood next to it looking cheeky. When she reached him, he slipped the gate open really quickly and legged it off (although this is an example of where the master bit would break down- he has no road sense- and no idea that he should reference to model- he'll check out your reaciton to see if he's winding you up- because that to him is very amusing, but he doesn't reference to take his lead). There is no way of letting him know when he's gone too far.

He's been teasing like that from before he was 2.

Peek-a-boo- anywhere really- behind curtains, etc- he doesn't find it as funny as he used to, but he still enjoys it.

He made me laugh tonight- it was bath time, but dh had just put on bear in the big blue house. every time dh went into the room to tell him it was bath time (after the first time). Ds1 just jumped up, shoved him out of the room and slammed the door.

I don't think you would need to worry that he doesn't reference, has no road sense etc (I know that's worrying in itself, Ds2 can't be trusted near a road either) but what I mean is I think that is the starting point for most kids doing RDI. The point is for them to learn. Steve Gutstein describes autism as resulting from a breakdown in the feedback mechanisms which is basically saying that the child is not monitoring, interpreting or using any of the information in his environment. It says on the DVD that they rarely find a child beyond stage 1 which is the very beginning and often not even having mastered that.

I would be interested to see what you think Monica as I am so new to this.

meant to say doesn't understand your reaction when he references

I think I'm missing it then- how do they teach how to interpret correctly? I think in ds1's case the big hint is his inability to imitate. I'm certain he fits the group where mirror neurones are not firing observing others so therefore he can't understand others' actions. So unless you actively teach imitation how do you get round that. I can see how teaching a child to reference will work- but only if they underrstand how the actions they are referencing relate to them.

Okay I might be all wrong about this, I’m a bit nervous to post it in case it shows how much I have missed the point myself but hopefully Monica will help me out also. According to RDI autism research shows that individuals with autism fail to develop a number of core deficits including appraisal (ie monitoring the environment and interpreting and focussing on the most useful information at any one time) and episodic memory which enables a person to extract the meaning from the event and use it productively in the future. They also have a loss of motivation meaning unlike NT children they avoid uncertainty as much as possible because they don’t have the skills to cope and respond to it.

I think with RDI you are going right back to the developmental stages before a child can extract meaning and working all through them again. But this time you do it a lot more slowly and exaggeratedly and you when you do an activity with the child the aim is to set it up in a way that they can succeed and then “spotlight” their success so that they create a memory of it. So you are trying to highlight the cause and effect so that they can associate the two together in their mind. And you don’t move on until they have got it. Steve Gutstein said that he worked with kids on the spectrum for 10 years and he couldn’t understand why he could have a really successful social interaction one week and yet it never progressed. Then he realised that the key was that it was random whether the interaction and the success was actually stored in the memory. The idea of spotlighting is you highlight the key elements in an interaction so that the memory is encoded.

In addition I don't think that Steve Gutstein believes that the ability of individuals with autism to interpret facial expressions and non-verbal language is truly impaired but that they are not motivated to do it and by creating the motivation by giving them memories of success they begin to learn to interpret.