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.

Thanks Saker

I was looking at the book again at the weekend and there are literally 2 activities we could do. It was quite depressing tbh. In the form described above it sounds similar to floortime (which is no surprise as they are both "relationship" programs), although floortime talks of following the child's lead it is all about extending them, so the acitivites you descirbe are exactly the sorts of things they would describe.

They would be adamant that it isn't like floortime because it is not at all child led. It is critical that the child recognises you as their teacher. It is based on neurotypical development and I see it all the time with Ds1, wanting to do the things we do, try and do the most challenging bit of an activity and loving it if we teach him to do something new. They encourage you to do activities that you like and to avoid activities that the child is obsessional about or feels that are their own. The child also has no choice as to whether they participate in the activity also - so you don't ask them you just do it - some interesting discussions today about how you get an autistic child to do an activity they don't want but they did offer solutions and didn't avoid these questions. The activity is to be done in the way you want and you are in charge and they are your apprentice. That is not to say it is miserable for the kid. All the kids in the videos were enjoying the activities because they were able to succeed at them. There was an amazing piece of video footage of a 5 year old non-verbal child who started off very agitated trying to escape from the room or stimming. After working with him for 45min, Dr Gutstein had him actually seeking his father out from behind a curtain and showing real eagerness to participate in the activity again. He even referenced Dr Gutstein to see where his father was. The change was outstanding in the amount of time. I think he was very lucky in this particular case that the child hit it off with him but it was still very impressive.

Forget the book - we couldn't use the book and Ds2 is verbal. In all we've seen in the last 3 days I haven't seen any family doing an activity from the book except possibly jumping on the beanbags (can't remember if that's a specific activity or not).

Sorry to go on - I feel so positive and enthusiastic about it at the moment and it's making me evangelical .

I couldn't have got DS to put laundry into the laundry basket in a million years when he was younger (pre ABA!). Hand over hand or not! That was the problem with "traditional" speech therapy. It was based on capitalising on their interests.... he had none other than stims and I wasn't going to go down the Options route and join him in them. I still don't see any evidence of effectiveness, especially for very young, severely ASD childrn, my old hobby horse!

No, please go on - I've been looking forward to you going on this course for ages! I'm glad it's turned out to be so good - I've been working my way through the video clips on the connections website, which I've found more useful than the book. Still haven't contacted any consultants - we looked at their charges and realised that it would either mean remortgaging or me going back to work (which kind of defeats the purpose of the exercise). At the moment I'm doing a sort of floortime/amateur RDI mish-mash - some child initiated activities, some initiated by me, aiming to extend him in both. Our one solitary beanbag is taking a bit of a bashing...

oh god no that wouldn't work at all. He needs reinforcing. he won't do anything to follow my lead without reinforcement. Can't and won't. You see this "I see it all the time with Ds1, wanting to do the things we do, try and do the most challenging bit of an activity and loving it if we teach him to do something new" just doesn;t apply to ds1. He doesn't even notice what we do, let alone want to try it.

He is quite like your ds Davros in that there had always been very few interests. He is very into pouring at the moment. So I get out the magic sand try and extend that. Or we roll on the bouncy balls and extend that. Its play with a child who can't play so it suits us. Floortime is working ok because it is done in quite short bursts. For anything long and sustained and specific (ie teaching anything) would have to be ABA. Because without that structure he wouldn't know what was expected of him, would see no point in doing it and would just run away.

Such a slow typist - my post crossed with Davros's and Socci's, which is why it doesn't appear to make sense!

sphil- the playproject people sent me 2 cd's by mistake- I offered to send one back or pay, and they said no keep it with compliments (so they are very popular with me :o). I would give one to you, but I am using one as a training CD for my direct payments people and using the other myself. (sorry) It's quite good, teaches from basics up (which is very useful- especially for my direct payments crowd).

Baka - it was a nice thought anyway! Can you remember how much it cost to ship? Have been trying to contact the Playproject people but e-mails keep getting returned.

Socci - thanks for asking. I'm whispering this very quietly but we seem to be on a bit of a roll here atm. DS2 becoming much more communicative all the time - verbally and non-verbally - and whereas we've had little bursts before, this one has lasted since Christmas. Feel very superstitious about saying it though...
Had really positive feedback from DS1's teacher at Parents eve too, so all in all things are good in the Sphil household

It';s the same price as the US shipment - just over $6- arrived really quickly as well. That's how i ended up with 2. I emailed the office to ask about postage, they replied and said they'd post one out and invoice me. I said that was fine I could pay by paypal using the standard order form, so did that- and I ended up with one cd from the office, and one sent by whoever deals with the paypal side of things (seemed to be the pscyh himself!)

Oh that's very reasonable - Floortime DVDs cost $68 to ship!!!

The RDI dvd costs 50 dollars to ship iirc! I think you get a whole series of floortime ones don't you (about 10????) I may get them one day.

I've been pondering this- Saker- so does RDi assume that the child has an interest in what you are doing. What if they don't?

A lot of recent research is on mirror neurones (for everything- not just autism). These are basically neurones that fire when you make a particualr movement, and fire in the same way when you watch someone make the same movement. In some cases of autism they don't fire. Hence inability to imitate, and inability to understand how the actions of people around you realte to you.

I personally think that this is why ABA can be so successful. It starts by teaching imitation- if you can get those mirror neurones firing then the child can begin to understand the meaning of other's actions and can begin to apply it to themselves. I don't know how far into the spectrum it extends but I am convinced that a lot of ds1's problems are down to lack of mirror neurones doing what they're meant to do when observing others.

Hence the inability to engage him by being "interesting". It never has worked with ds1 ("look bubbles" in a squeaky voice from the nth SALT- anyone else recognise that?- ds1 would just wander off and fiddle with the sink).

See I don't understand this:

"The child also has no choice as to whether they participate in the activity also - so you don't ask them you just do it"

How? If ds1 doesn't want to do something he won't- he wanders off. Short of physically pinning him down (which doesn't work because he would just struggle to get away)- the only way to get him to do something he doesn't want to do is pair it with a reninforcer- and if its something he doesn't want to do it has to be a very very strong reinforcer. Without that you haven't got a hope.

Floortime differs from son-rise I think. In son-rise it seems to be that you join the child in endlessly repetitive stimming. In Floortime you don't stop stimming as such, and you follow your child's lead- but you always try to extend it further into functional play.

I'm interested in those Playproject CDs I don't know anything about them! Could be interesting so I can tell other parents if nothing else.
Oh yes, how well I remember our NHS SLT doing the "look bubbles" in squeeky voice!! I actually got on very well with her and a year or so later she told me she was embarrassed at how she used to think she should work with children with ASD. I remember going home and deciding "OK, I'm going to interact and get him interested in something"..... he turned the light off and left the room and me sitting alone in the dark He still has huge problems with "interests", doesn't even have those annoying repetitive ones like watching DVDs over and over or obsessing over the computer. But at least he now had good receptive language and expressive in Makaton and PecS. The best thing to "interest" him is physical activities and he does like just hanging around with us literally doing nothing!

They're quite basic Davros- kind of a lecture with notes you can print out and lots of video clips of how to do floortime. I have found floortime people very helpful- and the floortime pros all recommend ABA as well, which makes me trust them more.

He sounds so like ds1 (well he is!) We also stuggle with lack of interests- or anything to hold ds1's attention for more than a few seconds. Like your ds he likes kind of haning out with us, (will come over and plonk himself on a lap) and physical stuff. We do lots of walks with him.

IN the Saturday stuff at the moment I'm mainly concentrating on sensory things, massaging, jumping, smelling, balancing etc. Need to sort out swinging. Running off is a big problem (need to get a lock).

Haven't had time to read this properly but will later. Just wanted to say that Ds1 is my NT child. When I said "It is based on neurotypical development and I see it all the time with Ds1, wanting to do the things we do, try and do the most challenging bit of an activity and loving it if we teach him to do something new." i was talking about my NT child. I don't see that with Ds2. I will try and explain more later - the whole point is that if putting laundry in the basket with your child is too challenging then you find something easier - some people just start with rocking backwards and forwards with their child.

I'm fascinated in this mirror neurones stuff. DS2 is interested in some things but not others. He'll imitate some things (after much repetition usually) but not others. His new SALT did the bubbles thing with him in her first session and he ran over, held her hand and tried to blow. She did it again last week and he turned his back on her and buried himself in 'Thomas and the Fogman'. So does that mean that his mirror neurones are working, but dodgy? Or that some are firing and some not?

Davros, in terms of evidence they have two studies in press:
In the first they compared a group of 17 children on RDI with 14 non-RDI (some were doing behavioural therapies). Average time in RDI 16.8 months. They measured ADOS classification which I expect you know is a method for diagnosing ASD and classes children as autism, spectrum or non-autism. In the study 0 of the non-RDI children changed category. Of the RDI children 2 didn’t change, 6 changed from being classified as autism to non-autism, 5 from spectrum to non-autism and 2 from autism to spectrum. In the second study they didn’t have a control group – they have trouble finding families who don’t want to be in the RDI group. The average time in RDI was 41.5 months. They rated the critical items from the ADOS criteria – things like initiation of joint attention and reciprocal conversation. Each of the items could receive a score of 2=autism, 1= spectrum and 0= non-autism. The % ratings for each catetory changed from 61%, 29% and 10% pre-RDI to 7%, 38% and 54% post-RDI.

There was more data but I won't bore you with it all. I know you will say that oh, the children were all high functioning. Steve Gutstein doesn't actually accept the definitions high and low functioning. He says he has kids come to him with an IQ test result of 50 and no language but they are at the same level in the initial RDI tests as the ones who are classified as high-functioning. Interestingly after RDI for a few months their IQ scores often go up. Verbal stims from are no more distracting than an Asperger's child who talks constantly about dinosaurs. They showed a video of a child who was supposedly high-functioning but when they turned him round and counted to 10 while his mother hid behind 2 beanbags he couldn't find her! He got quite distressed and started saying "Mummy has gone to the doctor's." His point was that that is not high functioning in the real world whatever language he has.

The basis of RDI is that ASD children are unable to regulate their activity in response to change which leads to repeated failure at things and a feeling of incompetence. They retreat into a world of static systems where they can predict what is going to happen and they feel safe. What you are trying to do is to show them that they can cope with change by starting with very small changes and gradually increasing these as they start to feel more competent. So the idea is to choose an activity where you can establish a rhythym that you can make modifications to.

They don't suggest you choose an activity that your child is obsessed by or very much feels belongs to them because it is asking too much of them to cope with changes to it or to take your lead. The key thing is that what the activity is in itself is not important. It just needs to be something that you can establish rhythm with which you can then vary and occasionally add in some surprise element. This is called regulation. So Jimjams, if ds1 likes pouring sand you could sit with him pouring sand from one container to another. Probably in the first instance you would do it hand over hand so you can control the pace etc. Each time you pour you insert a small variation - you might make a different noise, hesitate, go faster, slower. The child is learning that something can have a pattern and change within that pattern. They will get a feeling of competence because they coped with the changes in the pattern. Another example is going for a walk holding hands and swinging hands. You might change the rhythym or chant, make noises etc.

Socci, you would choose an activity that your child doesn't need any receptive language to understand like walking.

The other thing is if you do RDI you have a consultant and it is their job to find ways of working with your child whatever the obstacles (stims, motor problems, language problems, biting, kicking etc). There are more than 60 consultants in the US and they can't all be working with just high functioning kids.

I honestly think it will be one of the great advances for autism treatment. In 10 years everyone will be doing it. Our group leader was an ABA therapist and RDI therapist for some time but has dropped ABA because she felt RDI is so much more effective for the kids she is working with.

Phew..... I should be getting commission.

Saker so glad this week has been inspiring for you, been wondering how it was going, email me once you've digested all the info etc. if you need any help getting started. I am glad you made the point about RDI not being about the activity but about the experience sharing, co ordinating and drawing the child to reference and regulate etc. Our consultant has done ABA, TEACH and loads of other stuff, his point is that ABA teaches the child the skill but even if this involves imitation/using pecs it is often a learnt rote behaviour (often for reward) and not to share the enjoyment of an interaction. This is what so unique about RDI, after all isn't addressing autism all about addressing the core social,communication and imagination deficits by showing a child the joy of a spontaneous interaction and how variation can be fun rather than teaching them to imitate/communicate rotely.

I've received an email from someone on the workshop this week asking for advice and consultants details so sounds like it has been a success :)

Hi Monica
Thanks for the encouragement! You explain it so much better than me. I'm still digesting it all but I am really inspired. Dh too and he's usually a cynical old thing! I will email you soon.