The evidence for Intensive Interaction reducing Challenging Behaviours?

I and a number of my colleagues here in Leeds have just submitted a paper for publication looking at the successful use of Intensive Interaction with service users admitted to our Trust's learning disability Assessment and Treatment Unit - these service users generally exhibiting some form of severe challenging behaviour. I believe that this paper makes a very strong case for using the approach with such service users. 

However, when writing up this paper it was difficult to find much in the way of other published research evidence of any direct relationship between the use of Intensive Interaction and a decrease in the frequency and severity of challenging behaviour - despite there being a huge amount of anecdotal evidence of many successful cases (including my own very extensive professional experience when working with such service users).

In a paper published in 2012 (Sharma, V. & Firth, G. (2012) ‘Effective Engagement through Intensive Interaction’, Learning Disability Practice, 15 (9), 20-2) we looked for and found only a limited number of peer reviewed journal articles providing some (also limited) evidence of positive challenging behaviour outcomes directly linked to the use of Intensive Interaction. These articles included:

Zeedyk, Davies, Parry & Caldwell (2009) who taught Intensive Interaction to 12 volunteers at a Romanian day centre for children with varying physical and cognitive disabilities. The results indicated a decrease in distress and self-harm behaviours in 39% (7) of the children. However the claims in this paper were methodologically weakened as there was no assessment of the prevalence of the challenging behaviour prior to the use of Intensive Interaction, and the post-intervention assessments were based only on the volunteers’ stated views.

Kellett (2003) offers a more methodologically robust study. Her research participant (aged 8) was observed over a 5 weeks baseline, followed by 42 weeks of Intensive Interaction. Over the Intensive Interaction sessions the challenging behaviour reduced significantly from an average of 15.8 recorded incidents pre-Intensive Interaction, to 1.34 incidents post-Intensive Interaction.

However, in contrast Elgie & Maguire (2001) recorded no observable change in their participant’s self-injurious behaviour (SIB), despite improvements in sociability (in comparison to baseline measures), although the researchers suggested this was due to the participant being in the early stages of intervention, and that she had been self-harming for most of her life.

In our paper we concluded that: 'Overall the limited research offers tentative support to the hypothesis that Intensive Interaction can be effective in reducing the severity and frequency of challenging behaviour' in individuals with severe or profound and multiple learning disabilities. We also said that what research there has been 'suffers from a variety of methodological limitations, including small samples and a lack of objective assessment pre- and post-intervention. Furthermore there appears to be a lack of measures to account for procedural integrity over what type and how Intensive Interaction was performed'.

This is now an area within which Intensive Interaction is often used (and in my experience very successfully) - but it is an area that I believe is chronically under researched (perhaps you can identify some more recently published papers: I do hope so!) ... and surely this is a state of affairs that needs to be rectified. 

Elgie, A. & Maguire, N. (2001) 'Intensive interaction with a woman with multiple and profound disabilities: a case study'. Tizard Learning Disability Review. 6, 3, 18-24.

Kellett, M. (2003) 'Jacob’s journey: developing sociability and communication in a young boy with severe and complex learning difficulties using the intensive interaction teaching approach'. Journal of Research in Special Educational Needs. 3, 1, 1-16.

Sharma, V. & Firth, G. (2012) ‘Effective Engagement through Intensive Interaction’, Learning Disability Practice, 15 (9), 20-2.

Zeedyk, M., Davies, C., Parry, S & Caldwell, P. (2009) 'Fostering social engagement in Romanian children with communicative impairments: the experiences of newly trained practitioners of Intensive Interaction'. British Journal of Learning Disabilities. 37, 3, 186-196.

'Intensive Interaction seems a logical and obvious approach to fostering and developing communicative and social abilities in a learner-led, naturalistic way' Lydia Swinton (2012)

Sometimes when we do our training, we leave out a range of books and packs for trainees to look at during coffee and lunch breaks. One such book is Intensive Interaction: Theoretical perspectives (2012), and in it is a extremely well researched and referenced chapter on 'Intensive Interaction and its relationship with the trial of impairments in ASD' by teacher Lydia Swinton. It is still well worth a read, as the extracts below attest.

Intensive Interaction and its relationship with the trial of impairments in ASD by Lydia Swinton in Intensive Interaction: Theoretical perspectives (2012) Sage.

The author begins by acknowledging that people with ASD have ‘a range of individual differences’ and identifies ‘the vast complexity of trying to teach social skills [to people with ASD]’. She also succinctly relates a view that her experience ‘of the approaches used to teach individuals with ASD did not seem to incorporate any means of teaching these social skills or, if they did ... it was in a manner which seemed artificial and formulaic’.

The author applauds a recent ‘greater focus in these [neurological and non-conscious] areas’ and states that ‘the findings of neurological research are beginning to reflect the ‘gut feeling’ nature of Intensive Interaction’. She goes on to add ‘practice that was initially led by empathy and instinct is now being supported by neurological reality’.

The Fundamentals of Communication and what is taught/enhanced through the use of Intensive Interaction

Here Swinton states that ‘The link between the outcomes of Intensive Interaction activities and the potential impact of these outcomes upon the triad of impairments is not in any way radical or improbable’. Instead, she states that ‘Intensive Interaction seems a logical and obvious approach to fostering and developing communicative and social abilities in a learner-led, naturalistic way’. 

Intensive Interaction 'also addresses these issues with more depth and richness than any of the other currently used ASD approaches, focusing on areas of communicative development which are not often attended to by the more structured, teacher-led methods’. She goes on to state that Intensive Interaction ‘seems to be an approach refined to the complexity of the communication impairments’ experienced by people with ASD.

How the Fundamentals of Communication work alongside the triad of impairments

In this section Swinton explores some of the research into the use of Intensive Interaction with people with ASD, and suggests that its usefulness lies in the fact that with Intensive Interaction ‘the learner is enabled to have a meaningful role within an interaction, without the pressure to communicate in a ‘typical’ way’.  She then focuses on the use of imitation, which she describes as ‘a starting point to develop awareness of self and other' and ‘can increase eye contact, gesture and touching in children with ASD, as long as it is child-led’.

According to Swinton ‘initiation of communication’ is also important, and according to the National Research Council ‘... interactive styles of teaching which offer initiation of communication activities have more beneficial long-term effects on the progress of children with ASD’. She then discusses the Intensive Interaction principles of ‘viewing stereotypical behaviours as having potentially communicative functions’, ‘tasklessness’ and ‘tuned-inness’, seeing these aspects of Intensive Interaction practice as providing the learner with ‘a customised, synchronised and fully sensitised communication experience ... providing a ‘good fit’ between the teachers input and the learners needs’.

However, the author offers a note of caution when stating that ‘while the developmental, learner-led ethos of Intensive Interaction is frequently lauded, it often does not seem to translate into general practices in services’ ... and that the impact of Intensive Interaction in the ASD field ‘should be more acutely realised than it currently is’.

Resolution

In the final section Swinton compares Intensive Interaction with other autism-specific approaches (TEACCH, CHAT, PECS) which she says ‘focus on a rigid, highly structured way of teaching and assessing these very complex, sophisticated and, at times, surprisingly diverse skills’ and ‘do not even appear to address’ a learner’s social communication difficulties. In contrast, according to Swinton, ‘Intensive Interaction allows the development of the messy, jumbled and unique process of learning to communicate and socialise, without placing demands or restrictions upon the learners’.

Some message reinforcing Intensive Interaction 'quotes'

During my training I often (well sometimes) put Intensive Interaction 'quotes' on the PowerPoint slides that only have a functional use e.g. Coffee Break, Lunch, etc. I include them to support and subliminally reinforce the central messages I am trying to get across in the more obvious and overt training activities. Here are some of my favourites (in no particular order):

'You can't overstate the importance of communication, without it you can't interact, and without interactions you can't have a relationship, and without a relationship I don't think one can have a life of any real sort.’ Clinical Psychologist respondent in 2014 Intensive Interaction research study.

‘Through Intensive Interaction we can shift our vision of our sons and daughters from impaired versions of us, to fulfilled versions of themselves.’ Anonymous Intensive Interaction trainee, Australia.

‘Learning occurs when we provide the environment that allows the learner to recognise something is happening because of something he/she does.' Mark Barber, Learning Other People’s Language.

‘My first intentional communication using this approach was with a gentleman who was said to have no interest in people or communication. He had profound learning disabilities and a number of challenging behaviours. When I first met him he was lying on the floor, banging his head against the wall/floor joint, screaming and hitting his face with his hand and forearm. I laid down on the floor a short distance away and mirrored the arm movement. Within 10 minutes we were achieving eye contact and turn taking, the screaming had stopped, the head banging and hitting had stopped. We maintained our interaction for nearly half an hour. I was totally won over by this approach.’ Marion Crabbe, Intensive Interaction Newsletter, Issue 7.

‘Addressing the issues for people with complex needs is … about recognising that the very particular support needs of an individual will mean very individualised support packages, including systems for facilitating meaningful two-way communication.' Valuing People Now: a new three-year strategy for people with learning disabilities (DoH, 2009).

‘By spending time with someone [using Intensive Interaction] we are valuing them: respecting them and meeting their basic human need to make meaningful and satisfying relationships, which is central for a decent quality of life.’ Dr. Ruth Berry, (2010),  Understanding Intensive Interaction: context and concepts for professional and families.

'What would appear to be the simplest of things are a great achievement; a smile, eye contact…' Anonymous staff attendee, The Interactive Café Evaluation.

‘Things gain meaning by being used in a shared experience or joint action.’ John Dewey, American philosopher and educator.

‘Discovering Intensive Interaction was not a revelation for me, it was more like a confirmation of the way I had always felt comfortable working. But suddenly I had a name and an explanation’. Debbie Evans, Intensive Interaction Newsletter, Issue 15.

‘The journey with each student is to build a sense of useful and fun togetherness.’ Kieron Hubrick (NZ teacher) in ‘Intensive Interaction: find yourself and be yourself’’.

‘I have days when I go home happy after a hand squeeze is returned… recognition of being involved in human communication, that thing which surely brings us all the most happiness.’ Christine Smith, Intensive Interaction Newsletter, Issue 5.

'Intensive Interaction is a way of working with students that gives both teacher and student the freedom to be themselves, explore the means by which we can relate to each other and discover pathways of communication, the cornerstone of all learning.’ Gillian Stewart: Oz Newsletter, Issue 1.

‘The difference between participation and compliance is at the very core of the Intensive Interaction approach.’ Adrian Kennedy, Learning Disability Practice (2001).

‘Learning, (whatever else it might be) is an interactive process in which people learn from each other, and not just by showing and telling.’ Jerome Bruner, American psychologist and educator.

‘Intensive Interaction is a rare modern phenomenon in that it has been discovered from practice, researched and then shared without the firm controls about who can use, teach and research the approach.’ Cath Irvine, RCSLT Bulletin, 2001.

‘What we’ve been introduced to this week is amazing. Everything that we were told did work, although I had had doubts. My opinion has completely changed. I feel like I’ve been witness to something special, and am very grateful to have had that opportunity.’ Student volunteer in the research paper ‘Fostering social engagement in Romanian children with communicative impairments’, Zeedyk et al, (2009).

Perhaps you have some others?

The basic right for social inclusion and 'moral parity' through Intensive Interaction

This week my Blog is built on three recent articles published in the journal PMLDLink. These articles all seem to point us to the purely moral arguments that support the use of Intensive Interaction with our learners, service users and family members. This moral argument makes the case that people, all people, have a right to 'moral parity', and that their needs for genuine social inclusion and belonging (i.e. through the use of Intensive Interaction) should be respected and therefore met ... as of right i.e. irrespective of all other considerations.

Here are some extracts from those articles:

Communication, human rights and Intensive Interaction by Dave Hewitt, Julie Calverley, Jules McKim & Amandine Mourière (PMLDLink,  vol 31(1), issue 92).

‘For years now, Intensive Interaction has been bringing this ordinary, normal joy and fulfilment of true human contact and relationship to the most communicatively disadvantaged people ... The people we care about, can become in that moment, no longer disadvantaged, can take up their rightful, ordinary, normal place in the social world and the social to-ing and fro-ing that the rest of us enjoy without really thinking about it’.

‘Are we not now advanced into the stage where we recognise that this need for basic, meaningful human connection and interaction, a sense of social belonging, is so prominent, that it is practically an abuse of human rights if services failed to provide members of staff with sufficient expertise for making human communication contact with service users who are very ‘difficult to reach’. These rights have surely already been internationally recognised (Article 21, United Nations 2006) ... everybody can have true social participation – and surely, as of right.’

A transformation from socially isolated into a social butterfly through using Intensive Interaction by Emily Woolman (PMLDLink, vol 31(1), issue 92)… a personal reflection on the Intensive Interaction journey I have had with my family member over 15 months as I trained to become an Intensive Interaction coordinator.

‘… Communication is an essential human need and is recognised as a basic human right: ‘Without it (communication), no individual or community can exist, or prosper’ (Thurman, S. 2009)'

‘Personally, the difference that Intensive Interaction has made to Rose and my family is incredible and I want this for every family … Rose has transformed from being socially isolated into a social butterfly. Every person who is socially isolated deserves to be a social butterfly and through using Intensive Interaction this profound transformation is possible and as Rose proves, age and disability is no barrier to communication!

The ethics of belonging by Melanie Nind & Iva Stranadová (PMLDLink, vol 31(1), issue 93).

‘… the sense of inclusion in community has not always reached people with PMLD.’

‘Belonging has been debated among philosophers, practitioners, researchers and disability activists … Antonsich (2010) argues it is central to well-being. Belonging is also about place – safe spaces; memory – being at ease with people ... Research to date has not considered how people with PMLD experience belonging but the ethics of belonging means that the concept must include them. It must involve being regarded as ‘worthy of moral parity’ (Feder Kittay, 2019)'.

I need say no more! 

You can subscribe to the PMLDLink journal by emailing: info@pmldlink.org.uk 

You are never to be beautiful, and certainly must not become powerful'

This week my blog concerns a journal editorial that I was sent quite recently (thanks Jan) that focused on the abuse suffered by people with learning disabilities at Winterbourne View - Crash: what went wrong at Winterbourne View? in the Journal of Intellectual Disabilities (2012), Issue 16(3) by Peter Oakes from the University of Hull.

The author states that ‘Despite significant investment of expertise and resources, it has remained remarkably difficult to maintain basic standards of good practice in many of the specialist services' ... and then across the rest of the article he repeatedly restates a profoundly troubling refrain that, for people with learning disabilities: 'You are never to be beautiful, and certainly must not become powerful'.  

This editorial piece sets out the journey for a 'powerless' service user from home, through repeated residential placements, and finally then on to more medicalised and geographically distant 'independent' hospital care. He sees the 'crash' of Winterbourne View (repeated more recently at Whorlton Hall) as being sadly inevitable.

‘The journey to the crash actually begins at home where your family is coming to terms with learning that their son, daughter, brother or sister is disabled, different, other. They are told through the media and the medical establishment that something has gone wrong, mistakes have been made and you are not as you should be. You are indeed something other, some form of loss, a burden perhaps. News is broken and sympathy expressed. You are never to be beautiful and certainly must not become powerful.’

‘At the new local service we meet more new people who work in the new service. There are quite a lot of them. They work ‘shifts’ and you must learn that they are not allowed to be your friend. The people who are paid to look after the powerless ones are called ‘staff’ and are often almost as powerless as the people they support; many do an amazing job.’

‘A ‘referral’ is made to one of the teams of health experts … You need help! Well, it is never as simple as that of course. You don’t need help: you need evidence-based interventions. Invariably they will do an assessment and explain that you, the powerless one, have needs and they, the powerful ones, know what they are. It will probably be called a ‘treatment’ or an ‘intervention’. This all takes time and it is often difficult for any solution other than medication to actually be implemented.’ (my bold-ing and underlining for emphasis)

‘The journey continues and you continue to express what it feels like when you are powerless and no one thinks you are beautiful or wants to be with you. They call your distress ‘challenging behaviour' but you don’t feel very challenging … Sometimes, the powerful ones in a local NHS service will step in and offer a bed. The language has now moved firmly into the medical arena and the possibility of straightforward ordinary health care is lost.’

‘The vast majority of people involved in the lead up to this crash wanted to make things better ...There will be tens of thousands of pages written to review and recommend. Working parties will meet, strategy groups will form, steering groups will have delivery subgroups, and something will be done – or perhaps not’ (again my bold-ing and underlining for emphasis).

This insightful and compelling editorial left me asking myself three questions:

1. How then do we create at least some power for such people? (the answer obviously being, in part, by the consistent and effective use of Intensive Interaction that is the most 'person-centred' social communication approach that there is ... and it is there, a whole page on it,  in 'Valuing People Now' (DoH, p.37, para 1.6 & all of p.38)) ...

2.  How do we start to acknowledge their beauty as individual human beings? (the answer obviously being, in part, by the consistent and effective use of Intensive Interaction that acknowledges the beauty of a person's essential 'self' and inner humanity... and it is there, a whole page on it, in 'Valuing People Now' (DoH, p.37, para 1.6 & all of p.38)) and ... 

3. Why is Intensive Interaction still not included in every other relevant Government and NGO published report, guidelines document, recommendation and/or review that defines the care for people with learning disabilities who are essentially beautiful and should be powerful? ... Hmmm sorry, for this one I really don't know the answer.

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?