The Big Secrets that Intensive Interaction holds for people with autism

(Speaking at the Intensive Interaction conference in Nottingham this year, Dave Hewett did something he doesn't usually do – he wrote his conference address in advance and read it aloud: he wanted to make very specifically planned points and to be more forthright than usual. I think it’s wonderful and have asked his permission to reproduce it here on my blog/ website.

I hope you enjoy it as much as I did, Sara x)

"About five years ago, I stood here claiming a little discomfort with the sensation of being the old guy that gets wheeled out at the end in order to say something wise and venerable and get everybody to go away nodding thoughtfully. I still felt like the irresponsible twenty-nine-year-old who started at Harperbury Hospital School in 1981, too stupid and ill-informed to be properly aware of what I knew and particularly, what I did not know.

Well… nothing much has changed, except that I am quite a bit older and I feel it though I am more comfortable with it. Plus, and this is true for the me five years ago, I do feel as though I have a much better grasp of what I do and do not know than I did in 1981. Somewhere in there, in that situation, maybe, lies something akin to wisdom.

So, in obvious venerable style, I will, in a moment start again in 1981, go through a bit of a story, where I will highlight for you some of the ‘Big Secrets’ of Intensive Interaction, making some points that are sometimes deliberately provocative and then try and resolve to a highly positive conclusion.

Before I do all that, let’s just preface something. It has long been a policy of myself and our organisation, to have an outlook that is bright, positive, forward looking. As I will unpack once again here, Intensive Interaction is inherently positive, naturalistic in the best way, effective, wonderful. We have always preferred to spend time on these things. It has not been our policy to be overly openly critical of others, to be critical of other approaches within our field even where we most assuredly disagree with their outlook and practices. Actually, we have preferred not even to mention them all that much.

But here, today, I am going to be as straightforward as I can and depart from that, in a hopefully friendly and supportive way. To help that along I hope, let’s have some qualifications to what I will say as I proceed. Can you try and remember the qualifications please?

• Intensive Interaction is not anti-symbols/sign. I/we are not in any way against the use of sign and symbols used for the right reasons, with the right person, applied in a proper way at the right time. Use of symbolic representation is of course a natural, valuable aspect of communication development. We are not against use of speech either. • Some of you will be using a combination of approaches, including Intensive Interaction, including other things I might briefly criticise. I have no wish to affront you, perhaps at best, only to thoughtfully provoke. I hope the fact that you are here means you are on a good track in my terms. • I still carry some benefits from my years of methodical work using behavioural approaches. Mostly around being methodical. They are not a reason for returning to those approaches. • Task analysis can be a useful tool for some learning, but not for complicated stuff.

I do have some regrets about our policy of not entering into comment. I regret my decision ten years ago, to cease work on developing an article with some very committed SLTs that was critical of PECs and the culture of poor practice that can arise around PECs. I regret also a similar decision over a journal article that would have been entitled ‘What does TEACCH teach?’ I feel now that it would have been a more positive than negative step to have openly written what I think and even perhaps, to have openly entered a battleground. I say perhaps, because even where there is a battle in our field of work, it is questionable how many of the participants are aware they are within it.

Whatever, we are where we are right now and that is actually a very good place where we have an organisation, an increasingly world-wide following and a burgeoning awareness in our field of the issues we have been espousing for years. But let us remember and mark right now, in this place, that it is quite clear that there is much yet to do and much to guard against. For instance, one of the reasons for this gathering, is that we need continually to work at making a positive effect on what we might characterise as an autism establishment or autism orthodoxy – in this country for instance – where for reasons of its own, the people within it struggle fully to realise and embrace the wonderful opportunity that Intensive Interaction presents for the people they and we care about. I believe we can identify some of their reasons, and that is the first purpose of my presentation and the main reason why I will end up being openly critical of other approaches and other thinking.

I started at Harperbury Hospital School in 1981 as Deputy Headteacher, I became Headteacher in 1983.

I was very young to be in both posts. I was not a knowledgeable practitioner, nor certainly not a gifted one. But… something about that school caused me to do a great deal of growing up and maturing very quickly. I believe I observed it have that effect on quite a few other people. We were working with about seventy-five students. By 1985 or so, the youngest were in their late teens, the rest various adult ages. Our student group covered the entire spectrum of diagnoses and definitions in our field, with probably somewhat more than 50% people with diagnoses of autism. Many of our students were capable of the most severely challenging behaviour.

Our development of Intensive Interaction with this group is a long story that must of course be cut short. It was never as tidy and methodical as later descriptions may suggest. It was however, a process that was sensitive, respectful, springing from the highest of motives and increasingly learned and well informed as we moved forward.

Just a note on the starting motivations. There were several. However, one biggie was dissatisfaction with the popular ways of working. We were using behaviour modification extensively in classical behaviour programmes. We would even employ extinction procedures on occasion using aversers. We were very expertly overseen by a behavioural psychologist. We used task analysis procedures for just about everything, breaking down ‘skills’ into a sequence of steps to be taught discreetly, often using operant conditioning and then joined up, using perhaps chaining, or backward chaining. If these terms are unfamiliar to you, I do suggest, respectfully, that you read more. Know thine enemy/ friend.

We were heavily committed to getting people sat on chairs doing ‘cognitive’ activities – puzzles and stuff – for long periods of the day. Actually many of our students would not use chairs much, plus I readily admit, I do not know what we were expecting them to learn by doing these ‘cognitive’ activities day after day. I think we were attempting to keep them controlled within something that looked like proper school work. For communication, we tried to teach people to use a few Makaton signs or a few symbols. There were quite a few good symbol systems back then, long before PECs became a popularised brand.

Some of us were just not happy with what we were doing, what we were trying to achieve, with the way we were working. I was not well-informed, but… I had already developed a distaste for behaviourism and behavioural approaches.

To this day, I cannot abide the use of food rewards or of food as an operant – even where it may seemingly be successful in conditioning a person to adopt the required target behaviour. I consider it to be inhuman, diminishing to the learner, and frankly, diminishing to the teacher.

My experiences with the development of Intensive Interaction has led me naturally to the following view. The extensive use of behaviourist approaches with people with autism is an admission of failure and of giving up. Practitioners have given up on any prospect that people with autism can learn naturally in the usual way. These people with autism, they are so different from the rest of us, they are so aberrant, so difficult to reach and difficult to engage in order to take part in learning, it is justifiable to use techniques developed in experiments with rats and pigeons – because we do not know what else to do.

We do know what else to do. We do, the Intensive Interaction community. We did not give up on the possibilities that people with autism can carry out the most vital learning in the usual, natural way. We found the way. It takes time with some people. One must be ultra-sensitive, tune-in, give time, empower the learner to embark on a safe journey of self-discovery and creativity. It is a beautiful thing. It works and changes peoples’ lives. It is Intensive Interaction.

Just to take this point a little further for a moment. I will sometimes semi-joke that Intensive Interaction practitioners are not all that interested in autism. We are of course. We try to read and stay abreast. A whole block of the Coordinator Course is dedicated to theories of autism. We have this conference. What I mean is, when an Intensive Interaction practitioner is attempting to be with a person with autism, their mind will not likely be on something like “oh I’m with an autistic person I must do this or that.” No, an Intensive Interaction practitioner is simply with a person, and if the principles of our naturalistic approach are operated properly, engagement and connection will take place. Intensive Interaction is self-adjusting to the person, whatever the condition, or impairment. Intensive Interaction practitioners are concerned with how much like the rest of use people with autism are. Not with how different they are.'

Why then, are we in a situation where something like ABA is still so popular? Why has the ‘autism establishment’ not held up its hands with exclamations of:

“Of course, this is what we should be doing. A beautiful sensitive approach that zeroes in very precisely on the fundamentals of social communication, the centrality of the Triad or Dyad of impairments and involves the person actively in dynamic learning of how to engage and connect. Of course.”

I think we all know that one reason is probably marketing. It is a continuing issue that Intensive Interaction cannot, probably will not compete with some of the marketing operations of other, particularly American approaches. I do hope Sara Moroza-James agrees that we have done a bit of jazzing-up of our marketing lately, but we are just not the sort of people who will in any way mislead or mis-represent. Melanie Nind, a long time ago, observed that she thought that people hardly ever felt let down by, I think, our Intensive Interaction, it describes itself on the tin, and does what it says on the tin. Nonetheless, it remains true, I guess, that marketing is one of our weaknesses.

Melanie made another observation a long time ago which I suggest is one of the main thoughts for all of us here today. She felt that many, especially specialist, autism establishments and practitioners were not attracted to Intensive Interaction because it is not specifically and specially for people who have autism - these establishments and practitioners are accustomed to working within this somewhat exclusive and rarified atmosphere of apparently highly specialised techniques. We cannot know of course, how far this is true. I assume it to be so, to some extent, based on conversations. Where this is the case, it underlines I think, my observations about an ‘autism orthodoxy’ where people with autism are viewed as something very different from the rest of us. And, be assured, I am not, of course not, dismissing or neglecting the need to be aware of deep, real issues such as environmental hypersensitivities.

Let us remember again, the extent to which Intensive Interaction is customised to the needs of people who have autism. More than 50% of our original group were very active people with severe, complicated autism conditions. The development of the approach totally took into account their needs and way of being – where that might be different from the rest of us. They totally influenced the development of Intensive Interaction and it was customised around them. There is not one atom within the approach that does not take them into account. I suggest the fact that Intensive Interaction works beautifully also for a whole load of other people who do not have autism, re-emphasises my point about similarity rather than difference.

So, the people behind the other approaches often don’t seem to know one of the big secrets, of course:

Secret 1: Intensive Interaction fundamentally works on difficulties with social communication.

What we – Intensive Interaction people – all know here remains a secret to those who have yet to be exposed to us, or those who have been exposed and failed to have the lightbulb go on. It does seem a bit of a silly situation when difficulties with social communication are known for decades to be so central to the condition, yet most of the main approaches in use fail even to attempt to work on social communication. This, even when there is at least one approach fully up and running that does this, yet many ‘experts’ and practitioners seemingly would prefer their people to be on their own in a booth doing baskets of puzzles.

Now the research by the team led by Professor Green and published recently in a strange, unusual blaze of publicity would seem to have all sorts of ramifications for us. I’m will briefly use this publication as a springboard to develop my argument. Graham and I particularly have spent some time and effort attempting to understand what is going on with it. Overall, there seems to be something positive going on. Yes, it seems encouraging that

• They seem to share many of our thoughts and outlook • Seem to understand usual communication development and to have read similar stuff • Seem to have a social interaction intervention focusing on social communication development

However, their write-up also provokes many questions. It is difficult to ascertain exactly how their approach works. The descriptions are enigmatic on this. It is not possible to discern whether it operates like Intensive Interaction. There seem to be signs of differences. I’m in doubt whether their approach properly and wonderfully capitalises on ‘learner leads’ and responsiveness. They seem to use specific objectives which they are working towards. They seem to have a desire to express progress in stages. It is unclear whether they understand some more of our secrets:

Secret 2: the learner leads the activity and the practitioner develops the content and the flow of the activity by responsiveness

Again of course, I am being bloody silly for effect here. This is not a secret, we’ve been openly publishing this principle of the approach for nearly thirty years. But it is a secret if you are a researcher who doesn’t read around a bit. It is a secret if you read it but don’t get the hang of what it truly means, or take the trouble to talk to or preferably observe one of you and find out. It is a secret if you read it and then think, “But we don’t work like that. It’s always better if the teacher leads and directs as usual.”

Secret 3: Tuning-in

Somebody recently asked me, whenever I watch a new video of an Intensive Interaction practitioner at work, what is the first thing I am looking for in the vid? Easy. It is ‘tuning-in’. This principle is much more emphasised and more minutely described in our training in recent years. If you don’t tune-in, be receptive to all feedback from the other person, you won’t know how and when to respond nor to what. You won’t know when not to respond. This actually can be a big secret even to those who already know it conceptually. They may struggle practically. It is a difficult one for people who like to direct and control.

We have years of understanding how to do this and how to teach it. We do not keep it a secret, We want to share our knowledge. I think we all experience a deep sense of regret if someone wants to develop a social communication intervention, but fails to grasp these secrets.

I see no sign that the researchers know these two secrets:

Secrets 2 & 3: Process-Central & Emergent Outcomes

Intensive Interaction understands the ‘natural model’ of communication development of infancy. It understands the rolling power of the accumulation of enjoyable repetitions and the natural aggregation of the developments and the emergent outcomes within that rolling flow over time

Practitioners can operate judiciously with each person within it, but there is no striving to force outcomes out, no agenda – setting within the activities. Basically, if you do not understand this, if you start setting objectives and trying to work through stages and try to move to this or that next stage, you are probably going to bugger the thing up. You might get some useful progress, it will in my book be much better than doing ABA, but you will not be unleashing the full power of what is possible. Which brings me neatly to the next big secret…'

If you just imitate them, you are probably not tuning-in properly, you are probably responding in a flat, wooden, kind of a way. You’ll probably get some effect, but you will not be able to exploit all the wonderful potentialities and complexities of the system of social communication development.

In my continuing study of Intensive Interaction, I am more and more fascinated by the relationship between simplicity and complexity. So, In proper end of conference style, I will now work my way towards a proper, big, positive finish on this theme.

Many of you here know me well, and you are aware that I do not have a religious faith. I confess that to the rest of you with the same easy pride in the nature of my personhood, that I judge believers feel when they hold up their faith as one of the defining features of their daily experience.

However, this does not mean that I lack faith, or a sense of the spirit, or an amazement at what the human spirit is capable of producing. That faith is reinforced over and over as I meet people with autism and feel the zest for life they exhibit. The intellectual process that has led me to be what is, I believe, a full appreciator of the stupifyingly wonderful and complex processes of the natural development of the world, evolution, natural selection, or however you wish to characterise it, leaves me also, almost devotedly Pagan in my humanistic worship of the beautiful, intricate processes of nature.

Us lot, Sapiens, we are capable of creating works of incredible beauty and indeed complexity. We are capable of course of the other thing as well, the dark side, but here, today, we put all that aside and focus on the beauty and complexity. Intensive Interaction is beautiful. It is a beautiful creation or a beautiful discovery of people dedicated to achieving something profound and wonderful.

My rampantly humanist outlook on life also leaves me with a sense of awe and wonder as I behold all the doings of which we homo-sapiens are capable. I am continuously stunned speechless with pleasure, joy and wonder as I gaze at great works of art, architecture, listen to great music on my hi-fi, or indeed, an amateur performer at an open mic night in a pub. In the same category of enchantment, let’s put eating a great meal, drinking a wonderful wine, watching a person with autism doing a finger painting or writing a list, whilst clearly in thrall to a profound sensation of inner creativity. Then also, before we get too carried away with any notion of beauty residing only in the most lyrical of expressiveness, I have always remembered the observation by the writer of ‘Zen and the Art of Mororcycle Maintenance’, that the Buddha, the ‘godhead’ may as surely be found in the complex workings of a BMW motorcycle gearbox, as it may be on the ceiling of the Sistene Chapel.

Many of you know how much I love music. A work by Johan Sebastien Bach can be easy listening - a thing of easy, accessible, lyrical beauty. But beware… underneath however, it is formed by mighty complexities of structure and harmony.

Intensive Interaction is beautiful like this – simple-seeming, easy to watch, easy to do if you get the hang of the simple principles of the inter-personal interface. But it generates, is underpinned by, huge, complex machinations of cognition, emotion and neurology.

'I am occasionally asked this question. I guess we all are. It is a seemingly intellectually valid, caring on behalf of the other person, right-on, PC kind of a question. I do understand why someone might hold the views that generate it. I was asked it again three weeks ago, whilst watching the famous, video of John, alone, with his yellow thing.

“Perhaps he prefers to be on his own like that. Who are we to decide on his behalf that he must be social and to intervene?”

I suggest you always attempt to answer with patience and respect, as I do, and, as I did, use the moment to make profound points to the others listening. It may be that you are replying more effectively for them than the questioner.

Of course, I believe the questioner’s thinking is fatally, tragically flawed. I do hold the view that there are many, many people who have autism who would indeed rather be on their own, rather than endure the sorts of contacts with other people – staff - that are usually on offer. I do not think I have ever met a person who would rather be alone once they have had a tiny bit of experience of the sorts of sensitive, supportive social connections on offer through Intensive Interaction. Never. Not one.

The issues just outlined can as easily apply to someone much more able than John. I take my laundry for a service wash at a Launderette in the next town. The lady there has a twenty-two year old son with Asperger’s. He spends all of his time in his bedroom, on his PC. He does not like to come out, he does not like to talk even to his mother. I have never seen him. I believe there is a form of social interaction he could experience – gradually – which would be agreeable to him. Well, it might be too late. But, our Intensive Interaction horizons are ever expanding. We are working gradually on applying the principles further than our original vision.

I hope you go away now with these last thoughts. I have said out loud some things we do not normally say. My vexation at the state of play in the autism establishment is intended I hope, to motivate you to take on the issues and enter discussions with - whomever. But these vexations are not the present theme of Intensive Interaction and autism. Our mission and our organisation is expanding and developing in the same steady, sincere, honest manner that it has been from the beginning. We are world-wide and the message is reaching more people every day."