Intensive interaction and PECS - autism

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Hi, I wondered if anyone has any experience of using intensive interaction with toddlers. Our 2 year old is at the start of the assessment process for autism/ASD and has poor speech and very little comprehension of our speech. At our initial speech therapy appointment today it was recommended that we carry out a process called Intensive Interaction with him; I've ordered some books from the library on this but wondered if anyone has used it with young children.

On observing him, the speech therapist felt that he was very firmly in his own little world for most of the time unless I was doing something he was very interested in at which point he would join in with me. She felt that he didn't understand what communication is in terms of maintaining eye contact, taking turns, copying etc and until he understands this, he won't start to try to interact more fully. Although she couldn't say much, her opinion was that he was showing many behaviours that were consistent with autism.

It was also felt that he will benefit from using PECs to help him understand what is happening around him, eg, out in car, dinner time, bath time and also to help him tell us what he wants. We're on the waiting list for this but it is unlikely to be for another 4-6 months as the list is long. Has anyone taught themselves PECs? I'm not sure if the resources are something I can buy myself or if they're ridiculously expensive or only available from professionals. We are hoping to apply for DLA for him in a few months once we've got some reports and assessments to back up our application and then hopefully could use that money to fund private speech therapy perhaps on a fortnightly basis(it seems that the NHS speech therapy isn't going to be more than a session every couple of months even once we get to the top of the list). If anyone has ex

experience of using a private speech therapist, I'd love to know how you found it. Ideally it would be good to use both NHS and private speech therapy.

Whoops, forgot to also ask about nursery. We have an initial portage visit in a couple of weeks and apparently they will be able to organise for him to receive 15 hours a week of nursery due to his development needs (at the moment he is home full-time with myself). Idealy we'd like him to attend nursery as I think it would be good for him (and it would give me chance to do the things he hates or causes chaos with such as going to the supermarket, mowing the lawn, cooking, ironing, etc) but don't know if he'd cope with a 'normal' busy toddler room. He is fine with other children being near him but as soon as they try to interact, he gets scared and upset. He also doesn't like noisy or busy environments and is oblivious to situations where everyone sits down for a story/song time/snack. He doesn't have any skills to explain what he wants by pointing or verbalising and I'm worried that we'd would be putting him in a situation where he would be distressed and confused.

If we do send him to nursery, has anyone got any pointers on what to look for? I've been told by portage that nurseries can apply for additional funding to provide 1:1 care if they feel unable to manage on existing staff ratios but on speaking to other parents it appears that often the funding doesn't cover the cost of the 1:1 carer and so the place is refused due to staffing costs.

You could always do the training to teach PECS yourself? It's quite expensive (currently 174 for a parent to do the 2 day workshop - a lot more for professionals though) It would teach you everything you need to know to start and to develop your son's use of PECS (Picture Exchange Communication System) There are courses all over the country. You'd also be able to advise the nursery or whatever on how to do it. There are some expensive things (like PECS books and symbols) you may be persuaded to buy, but you don't need any of these. Bits of card, preferably a laninator, and sticky velcro are useful and do everything the expensive files do just as well.
As to intensive interaction, I've used it with many children at very early stages of development (I teach special children) and find it really helpful. You may also find Tac-Pac a simpe but effective way to support your son's sensory integration and communication too - also an easy course, cheaper for parents than professionals and fun!

Ok, it seems like your DS is where mine was 12 months ago. He was 3.2 and received a dx of ASD. He did not speak at all, no eye contact and completely in his own world. Six weeks after his dx we had an intensive interaction course which involved a parental session at the beginning followed by four sessions over two weeks with three other children (accompanied by one parent) and a SALT and psychologist. The sessions were filmed for a parental review at the end.

I have to say that this was a turning point for our child - in the first session - he screamed and would not sit down and kept trying to move away and not concentrate on the short tasks (spinning top as an example). My DH then took DS to the next two sessions. I took him to the final one and the difference was startling - he could concentrate on the task for 1 minute and he would come and join in the tasks when requested and would stop when his turn was over. He sat down without me having to hold him. This helped our DS to turn a corner.

DS then moved on to PECS and had weekly sessions and as he would share attentions, he grasped it immediately - the ability to communicate his basic needs led to less frustration all round. Nine months after our intensive interaction sessions and DS is using PECS at sentence level and has started using about ten words. But without the intensive interaction sessions we would not be where we are now.

As for starting PECS yourself - it wasn't recommended by our team because the handing over of the symbol requires training to get it right - the SALT would not even introduce it at nursery until the staff had been trained and they went in and observed them after the training - there is a very specific way of doing it in order to make the child request the item in order to initiate communication.

So from our experience intensive interaction made a huge difference to our DS's life. Good luck.

I did the pecs training and it was really good. Once you've done it you realise few NHS Slts actually teach it properly. They just go on the same course but then unless they work in a special school don't get to practise the skill and so often get it wrong. You get course materials etc with the cost of course. Pyramid that run them used to have a grant scheme if you qualify.

I haven't used intensive interaction and am dubious about it especially for children who just have autism / speech problems and no other learning disability (low iq). ABA has a much stronger evidence base and actually teaches the missing skills rather than just a case of playing alongside and waiting for the child to 'understand' turn taking, copying etc. My DS is very passive and just did repetitive behaviours over and over, if we hadn't taught him skills directly using aba (and motivated / rewarded him for doing so) we would still be waiting for him to 'understand' what to do! ABA taught him to imitate in a week, it's a crucial skill and most other learning depends on it. The SLT didn't know how to teach DS to imitate and just wrote him off as having severe LD on top of autism because he couldn't do it. DS is now 7, in mainstream (with ABA) and can read, do maths etc. His language is still delayed but he's making good progress.

Often council autism staff and Slts get sent on 1 or 2 day courses on things like pecs and II and then that becomes the intervention they offer (or rather they get you or the nursery to do it) because it's cheap to do it that way, but it's often not the most effective intervention. Look at research autism for info on different approaches and evidence base.

DS did go to nursery but he doesn't have a problem with noise. He did have 1:1 (essential as he was a runner) but they didn't get much training and it wasn't that great until we went to tribunal and had ABA Staff go in then it was much better.

Personally I would go towards specialist either look at ABA at home / mainstream; or special school nursery / unit / speech unit the advantage of these is the staff are likely to know how to teach pecs, initiation etc and should be more skilled. You can always move to mainstream later. You would need a statement and should apply. They will tell you it's too soon but very young children can skip straight to a statement and often they force you to appeal whatever age you apply so you may as well get it over with.

DS didn't go to nursery for 15 hours only about 7.5 over three days. The advantage was when we went to tribunal we were able to compare the provision in nursery with ABA and show aba achieved much more. It does also give you a break, but it's probably more babysitting not education for children with autism unless you are lucky enough to have a nursery with previous expertise.

The Autism national standards project (USA research was on prof Hastings webchat) also gives lots of info about different interventions. The best model is intensive specialist help at 2 eg ABA, early Denver etc then many children can transition into mainstream at 4/5. That model isn't really avail in uk unless you start by funding it yourself and go through statements and appeals. So special school nursery can be an alternative. The usual LA model is a bit of pecs, TEACCH and II in mainstream nursery, this model doesn't have any evidence I know of. In my experience few children gain skills or their behaviour isn't managed and then by about 7 mainstream can't cope with them and they end up in special school. DS is the only child of all the parents we met at age 2 who is still in mainstream all the others who had the LA intervention are now in special school having failed in mainstream. He's the only one who had ABA / intensive early intervention. He's the only one who is performing academically at his potential all the others are way behind because mainstream staff don't get taught how to teach children with autism and don't really have the time to do it.
ABA is expensive but you can reduce cost. At 2 we got a supervisor to train us and just did 15 hours a week and even on that within 6 weeks he was using single words, imitating strings of actions and more tuned in etc. We'd didn't win funding until he was nearly 4 after 2 appeals but DS has since then had 4 years of full time specialist support and in the words of the LA EP has hugely outperformed expectations.

Wow, a lot to think about, thank you. Agnes, the ABA sounds fantastic. Would you be able to give me an overview as to what it involves. DS babbles constantly, he is also thought to be intelligent in terms of his cognitive skills after observation so it sounds like ABA might bring him on more quickly. I presume I would need to wait for a definite diagnosis and statement before trying to get ABA intervention. Is it something I could learn through courses (paid for myself) or is it something purely carried out by professionals?

With regards to nursery, I don't think he would get much out of our local nurseries other than babysitting as you say. Ideally I'd want him to go to a specialist unit/nursery otherwise it could do more harm than good. How did you manage to get the ABA specialist at nursery, was it a case of appealing? Thank you all very much.

PECS doesn't help children understand what is around them. That is visual timetables and nowt to do with PECS.

However, PECS is indeed a very valuable tool, and extremely effecting but absolutely requires proper training from someone who knows the system, not someone who thinks they do.

I would recommend getting yourself booked onto a Pyramid Education training course with your first instalment of DLA money.

And everything that Agnes says. ABA is the only intervention with such a wealth of evidence base.

PECS is designed using the principles of ABA anyway.

If you want a detailed analysis of what EXACTLY your child can do, and to what extent, then and incremental step-by-step programme to teach the deficit skills in the fastest way possible using the things that most interest and motivate your child, then you'll want to use ABA.

A good video showing how ABA works

OP, you would not get ABA from the state (NHS or education wise). You will have to fund it privatly and then you can try to get it via the statement. but it will be a battle.

I have a Dd witnsevere Asd and we haven't really had any help bar 10 sessions of Salt and 3 OT sessions from 'the system'.

We are running a self funded P/T Aba programme.

if you are looking into arranging your own interventio n then just get going, don't waste time waiting for a dx.

as for DLA - apply now. Dla is based on need, you don't need a diagnosis either.

Yes, it's a difficult path to go down if you choose ABA, but a hugely rewarding one. If you can run your own programme for a while (we begged for money from several different family members) and can prove that it is effective for your child then it is possible (though rarely easy) to get funding from the LEA.

SALT, Portage and Intensive Interaction were all disastrous for ds1 (asd and very passive). The SALT turned up with her bubbles and nursery rhymes, following ds around copying his stims, and waiting for him to spontaneously answer a question (this was a child with zero receptive or expressive language). I sobbed my eyes out with anger and frustration after she left as she just had no clue how to motivate him to speak, ignoring the blindingly obvious fact that he lacked the intrinsic desire to communicate. It makes sense really, why should someone who works with the mechanics of speech production and helps children with lisps etc automatically have the hugely different set of skills needed to help a child with autism? I know there are some SALTS who are ABA-trained and if you find one like that then you would be very fortunate.

I never wanted to go down the Pecs route, as I really couldn't see the point of it unless all other methods have failed. At ds's ABA school they only use signing as an alternative to speech. The head told me it's not really much more than a picture matching system, and also that with the advent of iPads, Pecs is pretty much redundant now anyhow, going the way of the Betamax and 35mm film rolls!

PECS is not picture matching.

The trouble with it is that people confuse it with TEACHH or similar to TEACHH, because TEACHH is based on visual supports under an assumption that children with Autism are visual learners. TEACHH does have some evidence base but hardly anyone in the UK runs a model that provided that evidence and the evidence that it is effective relies on it being used for life. There is also a debate about what 'effective' actually means as though the person is independent of other people (after those other people have set up their environment) they are still utterly dependent on the system iyswim.

PECS is an intervention that teaches the benefits of COMMUNICATION and the process starts with learning the meaning of the tokens/cards/pictures in order to make the communication meaningful, and slowly moves towards the expectation of higher levels of communication and hopefully, eventually speech or another higher level communication package, or the written word.

It's benefit is that the system can be understood by those not specifically trained in it.

Because of the focus on communication rather than speech, it was appropriate to use the system with my verbal child. He progressed fast and learned that before you ask for something you must get the person's attention, and that there are a variety of ways of doing this. He also learned the skills he required to get some of his needs met in a more acceptable way than screaming, stimming, with a chance that no-one would understand, - and he was therefore became much happier.

I would agree you won't necessarily need pecs, I did the course the weekend before we started ABA and within the first day the ABA consultant said she didn't think he'd need pecs as he would talk! I don't regret doing the course though as it is in a way an introduction to ABA and ideas about motivation and need for repetition to get results.
Ideally you employ ABA tutors but especially at 2 when you are just starting it's quite easy to do yourself or rope in family and volunteers sometimes university students want work experience. I would suggest having a supervisor or consultant come regularly we had someone 2 hours a week to keep us on track and move DS on as he moved through early programmes very fast. There are online courses etc, you'd probably be better starting a new thread or looking up old ones. Councils vary in their attitude some will pay for some ABA or compromise rather than go to tribunal, some are hard line and make every parent go to tribunal. Evidence of progress is key so video etc before you start. We did use nursery for babysitting and to prove that wasn't going to be enough and it was good at tribunal to show we had tried the LA approach but it hadn't worked. Peach is ABA charity with info, there are books too, but I found it hard to visualise what to do from a book, DS really wasn't interested in doing anything with me. Caldwell charity fund some initial ABA. There was a thread on that recently. I won't lie the road to tribunal with a LA who played dirty was not pleasant but if we hadn't stuck it out we would not have a boy with all the skills he now has.

Our psychologist and SALT came up with their own version of intensive interaction called interaction and engagement. They have found that introducing PECS to children without doing any grounding was failing as they could not engage them enough to begin communication. By creating a specialist programme they found that children using PECS were more successful after this intervention. PECS taught our child that attempting to communicate gained him things he wanted.

I firmly believe that as autism is on a spectrum with the familiar no two people experience autism in the same way - I think that programmes should also be on a spectrum and individualised to each child.

PECS has grounding built into it. It is also individualised.

JJ, I am interested in this assertion
'Our psychologist and SALT came up with their own version of intensive interaction called interaction and engagement. They have found that introducing PECS to children without doing any grounding was failing as they could not engage them enough to begin communication'

These are my questions:

1. Their own version-can we have a look at this? How is it described and measured?
2. What 'grounding' do you speak of?
3. What evidence is there for this 'interaction and engagement.

As someone who has vast experience with Intensive Interaction, PECS and ABA (PECS is ABA in fact but most s/lts have little idea how to implement it properly, I feel able to speak with more authority than most on this matter.

I'm also an s/lt and a BCBA (behaviour analyst-person who is qualified to design programmes using ABA.)

Intensive Interaction is to sh. Utter tosh. There is no science behind it. It is nebulous touchy feely claptrap that might make the do gooding adults around the child feel good but will do next to nothing for a child with ASD.

It is gerally offered because most people have no idea what to do anyway, so buggering about imitating a disordered child at least fills time and looks vaguely therapeutic.

PECS is brilliant-when used properly. For that you need someone who is trained properly. Most s/lts aren't but neither do you need one to use it. Attend a course yourself.

ABA is an evidence based intervention that can produce measurable changes in many aspects of your child's development. It is not a miracle cure and requires a great deal of discipline and hard work..

Read this and bear these points in mind at every step.
Here

Thank you all, this is so helpful to us. Choc, I've requested the DLA form today and will fill it in as soon as it arrives. It'll probably be the case that by the time it gets looked at by them, we'll have some paperwork to back things up from the hospital and various assessments that are due to take place.

Starlight/Agnes, The ABA sounds really interesting and something we will look into funding ourselves, particularly once his DLA money hopefully starts. The plan would be to put this into an account each month and use it to pay towards courses/specialists etc whilst hassling the LA too. Agnes, could I ask roughly how much it cost for you to fund the ABA yourself before the LA took over? I'm expecting to have to fund it all ourselves for several years at least. It sounds like it would be beneficial to him because he does babble responses to our speech even though he doesn't appear to understand the meaning of what we say to him and it would be good to start moving him on quickly rather than waiting for him to 'let us in' at his pace which could be forever! Reading on the Intensive interaction, it seems to be what we've been doing at home with him anyway to a certain extent (ie, encouraging turn taking with balls, encouraging copying our behaviour and us copying him, letting him take the lead and us join in etc).

SisterChristina, your description of the SALT sessions was exactly like ours yesterday. Lots of bubbles, tickles, toys, and copying his noises but no advice on how to help him understand what words actually mean. He seems to want to communicate because of the fact that he babbles constantly in response to us and he gets so frustrated when we don't understand.

I'm a bit confused with PECs as to exactly what it is and will look into attending courses on that too. Thanks for the video links and possible funding suggestions, we'll look into all of it. Just so much to take in! Thank you.x

Choc, just read again and realised you're funding ABA yourself, could you give me a rough idea as to the costs please? Thanks very much.

For PECS training, go here.
Here

Click on 'Attend a workshop' and choose one entitled 'PECS LEVEL 1 Basic' at a time and date to suit you.

Buy and read this excellent book to start learning about ABA and how to help your child.
Motivation and Reinforcement

We do roughly 15h week. Our tutors are doing about 6h, I do the rest (I got trained up as well - it is not rocked science but it is hard work and takes a lot of discipline). Then supervision, consultation... all in all usually 500-600 a month (varies a bit). We get Dla and extra TC (disability element) and fund it that way.

If you want to have a go at the dla form yourself, then use the cerebra guide (just google).
I applied before Dd was dx but we were turned down twice (on application and reconsideration). By the time our appleal was in, we had a formal dx.

Tutor/Therapist - London £9-£16 per hour
Supervisor - £20 ish (depending on your programme you may or may not have a supervisor)
Consultant - piece of string. From £300 to £800 per day plus travel. Usually once a month but depending on the progress of your programme could be more frequent or less. Some are happy to Skype and do less hours or less frequent if your programme is going well, or if you decide your can't afford it.

My programme was with a £300 per day (plus travel) Consultant who we saw every 6-8 weeks and a highly trained tutor with an MSc in ABA at £15 per hour for 6 hours a week. No supervisor. I sat in on every session and replicated as best I could with advice from Tutor, as many additional hours a week as I could, having a baby/toddler around as well as ds.

I suppose I'm biased because chocolate (as reinforcer) got ds motivated to communicate and signing led him to speak. I'm not sure where Pecs would have fitted in. And a guy I know of who worked for Pyramid was a Pecs master but actually knew little to nothing of ABA

DS's receptive language was so non existent that our ABA consultant said no normal protocols applied (which was terrifying to hear!) but now he has a huge, huge receptive vocabulary. He had no concept that items had labels attached, and when he grasped that (via at times painstaking table work) he was away and started picking language up incidentally. If someone particularly wise hadn't worked with him, it was highly unlikely his potential would ever have been tapped into. With SALT and Portage and their Intensive Interaction he would have been screwed. Everything they ever said to him he would have heard as random noises and as for him spontaneously starting to talk, that is so absurd as to be laughable. Surely the first thing any SALT would be aware of is that children (any children) can't possibly talk until they can understand language receptively. Just bonkers.

We were lucky too. Our ACE ABA tutor had a way of making the task itself the reward and often one learning task was used as a reinforcer for another. So 'hurrah Ds, you did good sorting, that means we can practise putting on shoes - yay!'

Grounding is a typo – I meant groundwork – the idea is that if a child won’t share attention with you then they are unlikely to communicate using PECS.

I’m not sure why you are firing questions at me and demanding evidence – it is not my research project and I didn’t demand access to their academic methodology. I can only imagine their evidence stems from the huge number of children that have been through this program. From my own point of view the videos showed a big difference from a child in session 1 to 4.

The OP asked if anyone has evidence of using intensive interaction – I responded with my personal experience – I think my authority on my child is going to top yours. Thank you for completely dismissing what worked for my child as utter tosh – I imagine that people who have seen wonderful results with ABA feel the same when others tell they think it is a load of shit.

I would worry greatly about professional people spreading scientifically unsound theories. Sadly, it often happens which emphasises the need for parents to always seek evidence.