The ‘observable’ outcomes of Intensive Interaction

Over the last couple of weeks I have been very busy with quite a bit of training and conference presentation work (that's why I missed posting last week's Blog); in each presentation I have included a slide in which I try to summarise the 'Observable Outcomes' of Intensive Interaction, as evidenced in  published research papers. 

What I want to do is to clearly set out the case for trainees (or those new to our approach) that, across the general body of methodologically robust and peer-reviewed published research into Intensive Interaction, there are a number of common findings of increased and/or novel interactive responses, with these findings being reported across an increasing number of such studies i.e. we are an increasingly well evidenced social communication approach, with our evidence being published in a range of top-end research and academic journals. 

So below I have listed what I think are the most common observable and therefore measurable interactive outcomes associated with Intensive Interaction interventions, when compared to baseline measures (obviously there are many less easily observed and measured outcomes, but that's another story):

• increased social anticipation, initiation and/or engagement ... as evidenced in the following papers: Nind, 1996; Watson & Fisher, 1997; Kellett, 2000; Cameron & Bell, 2001; Kellett, 2003; Kellett, 2004; Forster & Taylor, 2006; Anderson, 2006; Barber, 2008; Samuel et al, 2008; Zeedyk et al, 2009a; Zeedyk et al, 2009b; Jones & Howley, 2010; Fraser, 2011; Argyropoulou & Papoudi, 2012; Harris & Wolverson, 2014; Rayner et al, 2016; Calveley, 2017.

• increased toleration of, or responsiveness to physical proximity ... as evidenced in: Nind, 1996; Firth et al, 2008; Zeedyk et al, 2009a; Zeedyk et al, 2009b; Fraser, 2011; Harris & Wolverson, 2014; Calveley, 2017.

• increased levels of contingent smiling ... as evidenced in: Nind, 1996; Lovell et al, 1998; Leaning & Watson, 2006; Barber, 2008; Zeedyk et al, 2009a; Argyropoulou & Papoudi, 2012; Calveley, 2017. 

• increased levels of eye contact or looking at another person’s face ... as evidenced in: Watson & Knight, 1991; Nind, 1996; Lovell et al, 1998; Kellett, 2000; Kellett, 2004; Cameron & Bell, 2001; Kellett, 2003; Kellett, 2004; Kellett, 2005; Leaning & Watson, 2006; Forster & Taylor, 2006; Barber, 2008; Samuel et al, 2008; Zeedyk et al, 2009a; Zeedyk et al, 2009b; Fraser, 2011; Argyropoulou & Papoudi, 2012; Harris & Wolverson, 2014. 

• increased use of vocalisation ... as evidenced in: Watson & Knight, 1991; Lovell et al, 1998; Kellett, 2000; Elgie & Maguire, 2001; Cameron & Bell, 2001; Argyropoulou & Papoudi, 2012; Harris & Wolverson, 2014; Calveley, 2017.

• increased levels of socially significant physical contact ... as evidenced in: Lovell et al, 1998; Kellett, 2000; Elgie & Maguire, 2001; Kellett, 2003; Kellett, 2004; Forster & Taylor, 2006; Firth et al, 2008; Barber, 2008; Samuel et al, 2008; Argyropoulou & Papoudi, 2012; Harris & Wolverson, 2014; Calveley, 2017.

• improved levels of joint attention ... as evidenced in: Nind, 1996; Lovell et al, 1998; Kellett, 2000; Kellett, 2003; Kellett, 2004; Kellett, 2005; Leaning & Watson, 2006; Samuel et al, 2008.

But as the last referenced work on my list is from 2017, I kept asking myself - have I missed some? Is this list as comprehensive and accurate as it could be? Well have I, and is it? 

So, does anyone out there know of any other 'peer-reviewed published research into Intensive Interaction' that should be included in this list, especially any more recent studies? If you do, then please do let me know. 

‘How adults with a profound intellectual disability engage others in interaction’ a 'conversational analysis' study.

Following up on last week's blog about 'epistemic asymmetry', I thought that I would report on the findings of the paper I was quoting from: I should warn you, it makes for some pretty depressing reading. The  paper was ‘How adults with a profound intellectual disability engage others in interaction’ by Antaki, C., Crompton, R., Walton, C. & Finlay, W. in the journal Sociology of Health & Illness (2017, 4/39, p. 581-598). 

The paper reports on a study (using video to record service user ‘initiations’ and subsequent responses by staff) of everyday life in a residential home in the UK for people with severe and profound intellectual disabilities [SPID].

The authors' stated aim was: 'to apply the methods of conversation analysis to the behaviour of people with severe or profound intellectual disabilities which either had the characteristics of initiations, or which were treated as initiations despite lacking the usual elements of such turns’. The authors identified these practices as 'sufficiently recurrent' ... that they were reasonably representative of practices that persons with a range of severe and profound intellectual impairments could and do use to engage with those around them'. 

They then describe how the staff responded to these non-verbal service user communicative initiations verbally - but in the authors' view 'inappropriately for people unable to comprehend, or to produce well-fitted next turns.' Indeed, the authors go on to state that: 'this mis-reliance on ordinary speakers’ conversational practices was one factor that contributed to residents abandoning the interaction in almost all cases’.

Also, equally depressing about the frequency of such attempted engagements: ‘In terms of a simple count in ...  over seven hours of possible interaction across about 40 days, there were 26 attempts by a resident at starting an engagement, sustaining four beyond the initial move. In other words ... aside from activity generated by the staff, residents had long periods of disengagement punctuated by them only very occasionally trying to initiate something’. They went on: ‘… most of their [the service user’s] efforts at establishing intersubjectivity with an interlocutor [the staff] – whether in the sense of co-producing a series of turns at interaction or joint attention, let alone agreement on the meaning of words – largely failed’.

The brutal truth is that, in over 7 hours filmed over 40 days: ‘Whatever means of engagement the residents attempted …usually failed’, and unfortunately, this service was described by the authors as 'not untypical of such services in the UK'.

When looking to explain this recurrent failure of the staff to make communicative engagements last over one turn (is that really a turn?), they state that: ‘untrained in any specific procedures for engagement with people with such serious cognitive impairments, they [the staff] necessarily fell back on using their ordinary skills of interaction.  The problem however, is that while these are effective for engaging with other neuro-typical people, they are not tuned to the needs and capacities of people with SPID’.

Now as they authors also make clear: ‘support staff … work under inauspicious conditions: poorly paid, liable to frequent job-turnover, obliged to consider health and safety as overriding priorities, and with the running of the residence’s domestic arrangements a constant pressure’. So should we be all that surprised? Remembering that this is a single case study, and I know that there are many services out there where Intensive Interaction is consistently used that aren’t like this – but in this case it wasn’t, and that is one case too many.

So what do the authors recommend (I hear you asking), well they did say this:

‘If there is a policy recommendation here, it is for staff to give time to be with residents in some activity that affords their doing something that would count not as merely responsive, but as positively initiating; and to reward any such initiations with patient responses and – though this edges into the challenging – for the staff member to channel their neuro-typical instincts into formats that the resident will understand’. Intensive Interaction, yes surely, it has to be Intensive Interaction!

... but there was no mention of Intensive Interaction, not in this whole paper, not even from the academics who wrote it, in 2017, slap bang in the midlands of the UK … and this depresses me, because it makes me ask: what are we doing wrong, or not doing right, that this is still happening? 

'Epistemic asymmetry' ... what's that? and what's it got to do with anything at all?

I was recently sent a link to a paper (Antaki et al (2016) 'How adults with a profound intellectual disability engage others in interaction' in the journal Sociology of Health & Illness) which I read with some interest ... although it was at times quite hard intellectual going (and there were no references to Intensive interaction in it, which I found somewhat disappointing to say the least!). However, this paper introduced me to a new issue (or concept, or possibly both) that I had never heard of, but that is associated with the analytic processes of Conversational Analysis. But it was something that I actually found quite interesting, and it spurred me to think a bit more about it. 

This issue was one of 'epistemic asymmetry'; luckily they gave the uninformed reader (me) a useful explanation, which was:

'Epistemic status is the authority someone has to know about, and speak to, a given situation. Where there is an epistemic imbalance between two people, the one with less 'ownership' of the case will require a response from the one with more ... Given the intellectual limitations of people with SPID [Severe or Profound Intellectual Disabilities], the epistemic status of what they say (if it is intelligible) will be a very difficult matter to gauge, and may not reliably prompt a response in the same way as would an utterance by a neuro-typical person'.

So, without attending to the main thrust of the paper, this issue of an epistemic imbalance spurred me to think a bit more about the nature and frequency of situations encountered by people with severe or profound intellectual disabilities, where they will have less 'ownership' of the knowledge situated within any given context they are currently encountering. Such an epistemic imbalance will certainly be something they encounter on many occasions, and in many contexts that they might find themselves (often I suspect, not necessarily through their own choice).

But surely I thought, epistemic asymmetry can run two ways, and there should never be an assumption that a person with severe or profound intellectual disabilities is always going to be in a situation of knowing less than their communication partner about a topic around which a communication is initially focused, and then potentially further developed ... sometimes they will know more than their neuro-typical communication partner ... surely it all depends on the topic of that conversational exchange!

There have been many occasions when I have been sharing time and space with someone with severe or profound intellectual disabilities and felt like I was clearly the one who needed to do all the learning in the given situation, and thus set right any epistemic asymmetry (I feel like that most of the time, but now I have a name for it). I feel like this I think, because the conversational topic I am endeavouring to focus on in an Intensive Interaction engagement with someone with severe or profound intellectual disabilities, is the person themselves, and their communication strengths, and their currently evidenced activities and interests ... and also about their sometimes subtly expressed views about how they perceive me, and about how well (or otherwise) I am sociably responding to them. 

So the imbalance in the 'ownership' of socially situated knowledge (which then goes on to create any subsequent epistemic asymmetry) is something we should look to address as often as possible; we should do this by making it our task to learn more about the person, and how they are experiencing the world around them ... and (I bet you've guessed it), we should do that by using Intensive Interaction to genuinely connect, and inter-subjectively share our knowledge of ourselves, and be with each other in an 'epistemically' symmetrical and therefore equitable way.

‘Autistic children are routinely restrained and drugged in Care’ - The Times on 18th May 2019

‘Autistic children are routinely restrained and drugged in Care’

A case study from an article in The Times on 18^th May 2019

‘Bethany….. has autism and suffers from extreme anxiety.  She was kept in seclusion for 21 months at St Andrew’s Hospital in Northampton, locked in a room with only a mattress and chair, and was given meals through a hatch in a metal door.  Staff at the psychiatric hospital which is run as a healthcare charity facing sustained criticism over the high pay of former executives, said she was aggressive and self-harmed’.

Now apparently, according to the Times (18/05/19), a CQC report has been commissioned by Matt Hancock (the current Health Secretary) after ‘revelations of abuse in mental health institutions seven years after the Winterbourne View Care home scandal’. This report is expected to ‘reveal wide spread and regular use of “inhumane” techniques to control both adult and child patients’.  The report will also highlight ‘the failure of health officials to create care plans that would allow children to live at home’ (although I do wonder why CQC had to be specifically asked to do this ... why weren't they sufficiently on the ball to do it anyway?). Former Care Minister, Norman Lamb, has apparently described the situation as an ‘on going scandal … serious child abuse is endemic in the system!’

I have to say that I am not in the least surprised.  As part of the Transforming Care initiative I was (for a short while) involved in a very similar care i.e. a case of the continuous solitary confinement of an individual in a privately run special hospital (he was also routinely fed through a hatch in the door); it was heart-breaking to see.  At the time (which didn’t last long as the funding for my involvement was time-limited and soon ran out) it did occur to me that there is a perverse incentive in the current system of funding i.e. it pays such private companies (and charities with apparently very highly paid executives) to have people remain in such conditions (despite these services having beautifully and presumably expensively created websites that claim the very best service values and practices).

Indeed at the time I did think that the severely challenging behaviours exhibited by people in such “inhumane” conditions must, to some degree, be reinforced by such conditions of powerlessness and futility, if not actually exacerbated due to a downward reactive spiral of negative 'behavioural' consequences and brutalising control in such ‘modern day asylums’ (as Dan Scorer of Mencap has described them) … and as also seen in last night’s BBC Panorama programme about Whorlton Hall specialist hospital.

Remember, it is 7 years since the Winterbourne View scandal (when 6 care staff were jailed - but none of the highly paid executives), but despite ‘speeches, policy documents, steering groups and delivery groups’, the system continues to fail those we have a societal obligation to properly care for, and to care about.

It makes me wonder just what the people in charge of CQC have being doing?

Why isn’t sufficient regard given by those in positions of power to promoting the consistent use of positive means to develop sociability, rapport and trusting relationships within these apparently 'special' services for children and adults? ... in the adult Learning Disability ATU here in Leeds Intensive Interaction is now routinely used with a range of our service users to clearly positive effect. 

And why does it take the media informed by whistle-blowers (and not CQC) to again show us that ‘the callous clearly remains mundane in some parts of the health system’?

Using Intensive Interaction with those who present within 'a broad spectrum of demand avoidance'.

At a recent Intensive Interaction Forum meeting held here in Leeds, we discussed:

'Using Intensive Interaction with service users who present with some level of demand avoidance'.

Emerging from this discussion were some issues that I thought might be useful for others (health professionals, teachers, parents, carers, etc) to consider when working with, or caring for, people (i.e. adults and children) who present with some level of demand avoidance (i.e. not just at a diagnosed ‘pathological' level).

The sections below are taken from the minutes of our Forum meeting:

Pathological Demand Avoidance (PDA) is an increasingly diagnosed neuro-developmental condition, coming under the ASD heading. However we (the Intensive Interaction forum attendees) generally thought that we had worked with a range of service users who fitted somewhere along a 'broad spectrum of demand avoidance’ (rather than it just presenting at some diagnostically labelled ‘pathological' level). This spectrum of demand avoidance was described as differing widely in its form and severity, depending on the characteristics of the individual service users. 

We then addressed 3 aspects of working with people who present with some degree of demand avoidance: 
1. Why might demand avoidance occur for some service users?  
2. How might demand avoidance be presented? 
(and 3. How might Intensive Interaction help ameliorate the impact of demand avoidance for such service users? - but I will cover this in another, later Blog). 

So:

1.  Why might someone be (or become) demand avoidant?

• Anxiety, including social anxiety.

• Fear of the unknown, and a wish to avoid uncertainty.

• Fear of failure, getting something wrong, or disappointing others.

• Needing to control a situation, so therefore being unwilling to be controlled by another.

• Not fully understanding a demand, this then leading to anxiety about their ability to complete the demand.

• Previous negative experiences or trauma.

• Lack of positive interaction and /or socially supportive feedback.

• Low confidence or self-esteem and/or negative self-worth or self-view.

• Lack of social skills.

• Neuro-developmental issues (incl. an official P.D.A. diagnosis).

• Not being interested in the current activity being offered (i.e. not actually being demand avoidant).

2.    How might a service user’s demand avoidance be presented?

• Responding negatively to every day requests (not just ‘challenging’ things).

• Verbally declining (“no thanks”) or refusing (“NO!”) tasks that the person has the ability to do, or even actually likes doing.

• Ignoring or not responding to requests or the presentation of an activity.

• Changing the topic or closing down a conversation e.g. “it’s okay luv”, “Not just now”.

• Giving apologies before not doing something.

• Creating a distraction away from any given demand.

• Hiding offers of activities e.g. destroying letters, leaflets or invites etc.

• Responding negatively to positive comments or even to any praise given by others.

• Social withdrawal e.g. shutting eyes, avoiding eye contact.

• Physical isolation e.g. staying in bed, staying in a room, not going out.

• Physical withdrawal e.g. leaving the room, turning their back, etc.

• Physically pushing people away, out of their space.

• Failing to choose between some offered positive choices.

• Having a ‘Melt-down’ and/or causing environment damage.

So I suppose the question I should now ask others who weren't at our meeting is:

Do the above points ring true? ...are they accurate? ... are they sufficient? 

Is there more to add on these two aspects of working to support those with demand avoidance? (before we think about how Intensive Interaction might help such people?)

Please let me know your thoughts ...

p.s.This year's Intensive Interaction Weekend Workshop in October will be looking at these issues in more detail ... for further information on this professional development event, or if want an application form, please email me at: graham.firth@nhs.net

'Creating a clearing for live activity' by Ditte Rose Andersen

‘Creating a clearing for live activity: exploration, decisions and steps in implementing Intensive Interaction in Denmark’ – a chapter by Danish psychologist Ditte Rose Andersen from the book Delivering Intensive Interaction Across Settings (Barber & Firth, Eds, 2019) now available from Amazon - £4.43 in paperback or £0.99p Kindle version.

Below are some insightful and profound quotes selected from Ditte’s chapter covering her thoughts on different aspects of her Intensive Interaction dissemination work in Denmark:

‘Face to face-interaction, and its sense of live activity, is likely to be as important at a strategy meeting or a conference presentation as in the sandbox in an Intensive Interaction session’.

‘We come to understand both ourselves and others through our shared activities, not through abstract reasoning. The act of understanding another is bound up with the quality of our engagement with them’.

‘The [Intensive Interaction] approach is immediately socially inclusive and reciprocal in a way that lets you know the other person in a meaningful way. What you learn from participation is qualitatively different from the knowledge gained from distant observation, standardized testing, or clever experiments’.

‘In no way was I prepared for the profound and dramatic development it supports. It has been almost shocking to realize how attuned, responsive communication provides perfectly pitched conditions for the development of people’s potential’.

Ditte's chapter includes a narrative about her initial 'live activity' project when introducing Intensive Interaction into a Danish special school by directly working with an autistic boy called Mads.

‘At a face to face-level, I would describe the project period as one and a half years of living with, rather than overcoming, the challenge of different views and practices: living with that challenge in a way that allowed for time to practise’.

‘Although questions may be conceptual, theoretical and general, we need practice combined with reflection to be able to respond in meaningful, useful and precise ways’.

‘…if materials and symbols are used in ways that excessively controls the behaviour and activities of people with communication disabilities, they can be a hindrance to creating and nurturing developmentally relevant activities for children, students, service users’.

‘When faced with ideas, theories, values and concepts that we see as counterproductive to implementing Intensive Interaction, I think it is important to remember, that we don’t need to “...save the whole world or do anything grandiose” as the poem [‘Clearing’ by Martha Postlewaite, quoted at the start of Ditte’s chapter] reads. “Instead, create a clearing in the dense forest of your life and wait there patiently until the song that is yours alone to sing life falls into your own cupped hands…”’

After qualifying as an Intensive Interaction Coordinator in 2013, Ditte then went on to found Intensive Interaction Denmark in 2014. In 2015 she translated The Intensive Interaction Handbook into Danish, and in 2016 she received the Demetrious Haracopos grant, acknowledging her work in the spirit of Haracopos i.e. that ‘Every person has the right to be seen and heard’. 

For anyone even remotely interested in Intensive Interaction, I thoroughly recommend that you read Ditte's chapter in its entirety!

Did you know that research into the outcomes of Intensive Interaction started in 1991?

There are times when I feel that Intensive Interaction is still a fairly novel approach in educational or care services. However, the body of evidence for the range of positive outcomes for the approach actually goes back quite a way - in fact it goes back 28 years!

An Evaluation of Intensive Interactive Teaching with Pupils with Very Severe Learning Difficulties

Watson, J. & Knight, C. (1991) Child Language Teaching and Therapy, 7 (3), 310-25.

This 1991 article describes an evaluation of the use of Intensive Interaction by staff at a school for pupils with severe learning difficulties, in Edinburgh, over a one year period. Six pupils with severe learning difficulties were studied, these children being chosen to represent a range of age and ability. Six staff members worked with each given pupil over this period of time.

The Method: Staff were asked to behave as naturally as possible, and to introduce a toy or object that they felt would be interesting to the child at some point. The beginning of the session was signalled by taking off the pupils' shoes and leading them into the soft play area. Sessions were usually terminated when the staff member decided that the pupil had had enough (e.g. on the basis of decreased responsiveness). Each session was filmed, and staff also completed an interaction recording sheet. The staff were also interviewed at the end of the study.

The Findings: from this study it appeared that the interactions were important for the pupils, and staff emphasised the fact that ‘it builds a good relationship' and ‘there is confidence and trust ... built up'. Staff also talked about other positive effects, which included staff being more relaxed and more willing to wait for a pupil’s responses; and improvements in staffs’ observation skills.

In general, it was claimed that staff developed high levels of expertise, and that the interactive experiences ‘benefited their pupils and improved their own working practice’. Staff also claimed that the positive effects of the interactive experiences ‘also extended to other pupils in the class’ as the staff had become ‘more relaxed, more tolerant, and more willing to wait for responses’.

That research was published 28 years ago - and still we find ourselves introducing Intensive Interaction to staff teams who know little or nothing of the approach. More and more I find myself asking these questions:

Why isn't Intensive Interaction mandatory training for all staff who work in special education? and ...

What are we missing in getting Intensive Interaction truly embedded in the general fabric of our educational offer to all the children and staff (and parents) who would benefit?