The social model of disability, diversity, ABA, and autism

I’ve just listened to a short radio piece on the use of Applied Behaviour Analysis approaches to help children with autism learn. The segment is from BBC Radio 4’s You and Yours programme. Classic BBC in that they like to see a balance of views presented. There is some anti-ABA and some pro-ABA approaches.

http://www.bbc.co.uk/programmes/p01z78vz

For those of you outside of the UK who may not be able to listen to this piece, you may well have heard similar media discussions in your own countries. Several parents (from the group ABA4All - https://www.facebook.com/ABAforallchildren) tell their stories about how their children’s skills have changed significantly (they argue) as a direct result of the use of ABA approaches. The parents are seeking to challenge the NHS in the UK who, they argue, spends money on support for children with autism with less evidence than ABA approaches and so ABA ought to be made available via the UK NHS. Discussion with experts following this piece includes an attempt to clarify that ABA is NOT a treatment for autism (see also my blog on what ABA is - http://profhastings.blogspot.co.uk/2012/12/autism-evidence-3-what-is-aba-for.html) and that the approaches are very much focused on the needs of individual children. The critical perspective is a little unclear, because it is somewhat indirect. Luke Beardon (http://www.shu.ac.uk/faculties/ds/deci/staff/beardon-luke.html) argues that he prioritises a social model of disability rather than a medical one, and that no one treatment for autism will suit all children.

Interestingly, we also hear a statement from the UK National Institute for Care and Health Excellence saying they found no evidence for ABA when they reviewed treatments for children with autism. This is an incorrect statement in my view, and I have written about this before (http://profhastings.blogspot.co.uk/2013/04/autism-and-evidence-6.html). NICE actually do recommend several ABA approaches in their guidance. In addition, their methodology is so medical model focused that it misses the importance of how to consider evidence in support of complex (often more educational) interventions such as those based on ABA (http://profhastings.blogspot.co.uk/2012/12/who-do-you-believe-model-for.html).

I’ll not write more about the evidence base for ABA approaches in autism since my views on that are available for anyone to read and to consider whether they agree with me. I do want to pick up on the issue of the social model and also the diversity in autism (hence, no one treatment fits all).

The social model and ABA

I don’t intend a detailed review of the social model of disability here, and I am no expert. However, my understanding is that the social model at its core is about the responses of other people/society being what disables people. A medical/disease model sees conditions as things to get rid of – just as physical illnesses are subjected to a cure process. 

We know that ABA approaches, by definition, are firmly grounded in the view that the context around someone and how they behave is where we look to understand why things are happening as they are. Similarly, the environment (the social context in particular – what other people do) is what is changed in ABA approaches to deliver learning and other positive outcomes for people. This is exactly the approach that is applied in working with children with autism. ABA professionals should look to what it is about the environment, especially the social and educational environment, that needs to change to adapt to the child with autism. Most obviously this is seen in the fact that in early intervention in particular the teaching approach is different – more structured. There is little more significant in a child’s environment than how they are supported or taught during school (and also of course at home).

Behaviour analysis is also not informed by a medical model. It doesn’t recognise psychiatric or other medical labels for “disorders” as helpful explanations. Given this, ABA professionals should not be talking about “curing autism” – although I recognise that some do. ABA approaches in autism are instead focused on helping children (and adults) lead full lives, achieving the things that are important to them (and to their families). It is not about taking away autism at all. In fact, this is often a criticism of ABA approaches – that either they do not treat autism (note the medical model language used here), or that they don’t measure the core features of autism as outcomes. On the latter point: Of course not! First, we’re not trying to get rid of autism. Second, getting rid of autism is also unlikely to be the priority of a person with autism or their family so these “core features” are unlikely to be targeted.

At the very core of things here, my argument is that ABA approaches are compatible with a social model of disability. ABA approaches are enabling, emphasise that the environment needs to change to accommodate and support those with disabilities, and are not about getting rid of a disabling condition.

Therefore, it makes no sense to criticise ABA approaches as being anti-social model of disability. It certainly makes no sense to then add to the argument against ABA using perspectives derived from a medical model (e.g., ABA doesn’t “treat” the autism or the underlying neurological differences).

Diversity in Autism and ABA

My comments above make it clear that ABA approaches fully respect diversity. In fact, I have argued before that ABA approaches are the ultimate person/child-centred approach. Everything is focused on the child and their needs. Understanding the individual child’s strengths and weaknesses, understanding their preferences, understanding how their autism affects them day-to-day, designing a bespoke programme of support/learning, and also measuring progress at the level of specifically recorded outcomes that are individual to the priorities for that child. This is what a good ABA “programme” for a child will be like. There may be some similar pieces in several children’s programmes (e.g., perhaps several of them will use PECS as a communication tool), but the overall programme/support around each child will be different.

Because ABA is not one specific “treatment” for autism, and flexes to incorporate the full range of diversity, I also do not understand a criticism of ABA approaches that starts with “one approach to autism is not going to suit all children”. Actually, ABA offers a coherent framework within which probably the vast majority of needs and diversity can be understood and responded to (in terms of individualised supports). I can’t think of any other approach that offers that flexibility, respect for diversity, and coherence. Perhaps someone can put me right on that if there is another similarly diverse model out there. 

There is no darkness behind ABA (it is not the one ring to rule them all and in the darkness bind them), just people trying to understand and work out how to best support children with autism and their families. It is time for rapprochement on the common ground that is a social understanding and a respect for diversity in autism.

Who cares about families of children and adults with disabilities?

This blog is really about who cares about Research about families, so my apologies if you think you have been brought here under false pretences. Now you are here though, do read on anyway and let me have some feedback.

This is perhaps a more informal and reflective blog than my usual ones. I do try in these blogs to include information about research so that folks who can’t ordinarily access research reports get to hear about some of the stuff we and others do. There will be little direct reference to research in this blog. However, it is about research.

The “A Future Made Together” research summary report

I’ve been reflecting on two things this morning. The first is recent social media interest in a report from the Centre for Research in Autism and Education at the Institute of Education in London. This report is about what kind of research has been funded and published in the UK around autism and if this is correct in terms of balance when we look at the priorities of various stakeholders including families. The report can be downloaded for free from here [http://newsletters.ioe.ac.uk/A_Future_Made_Together_2013.pdf]. Nice stuff.

This report included input from family members of children or adults with autism giving their views on what the priorities ought to be for autism research in future. One of the things I was struck by was that there is pretty much no mention of research focused on the families of individuals with autism and their own needs and experiences. 

I am left wondering if the stakeholders who were a part of this process just didn’t think about families and their needs, whether the questions they were asked unintentionally led people away from thinking about families, or whether genuinely nobody cares about families and thus about family research. Of course, this last question is too strongly worded but I want to build on this point.

Googlilocks – Whose been looking at my blogs?!

The element of data that I do want to refer to in this blog is courtesy of Google. My blog uses their platform Blogger of course, and so I can see data on how many “views” there have been of my blog pages in total (over 46,000 since October 2012 – thank you for watching!) and also for each blog. The data on each blog are less clear (not a clear relationship with total views) but they do give a pretty good idea of which blogs people have been looking at. I’m not going to take these data too seriously because “views” will be influenced by what people search for online and any match with the blog titles I use, and probably by many other factors. However, the data have caused me to reflect further on this point about who cares about families.

My blog views show that when I write about behavioural/educational interventions in the field of autism, and to a lesser extent on topics relating to the scandals around the treatment of people with an intellectual disability and challenging behaviour, I have accumulated thousands of views. In contrast, when I have written about family research in autism or intellectual disability the “views” amount to several hundred. Don’t get me wrong – I am delighted if one person might view (and actually read!) a blog of mine. My point is the contrast in the data.

So, let me pose the question again – does anyone care about family research in intellectual disability and autism?

Family Research

There is a thriving international community in intellectual and developmental disabilities (IDD) family research. This is reflected in the existence of the Families Special Interest Research Group of the International Association for the Scientific Study of Intellectual and Developmental Disabilities (or IASSIDD for short). There is even a free download consensus report on what we know about families from research so far internationally [see - https://iassid.org/famdap]. Many of the same researchers carry out research about families and their needs and experiences when there is a person with autism or a person with intellectual disability in the family. So, I don’t think this is a neglected area of research in general, but does anyone else care about this research is what I want to know.

One thing I am wondering is whether my blogs (and our research) about families contain too little headline grabbing shock horror news. I deliberately avoid being overly negative and sensational about families’ experiences. This is not to deny that some families have a terrible time and are under really serious pressure and stress. They clearly are. It is just that I think many individuals and organisations are tempted to go beyond the data somewhat by being more dramatic than they need to be.

To see what I mean, you can check out two of my blogs about research and families. First, I argued that although more parents of children with IDD are under significant stress than other parents, it is not the case that the majority of parents are reporting significant psychological problems [see http://profhastings.blogspot.co.uk/2013/03/autism-stresses-and-positives-for.html]. I also argued that mothers of children with IDD reported as much positive well-being than other mothers, but just more negative stuff.

Second, my overview of research findings about siblings shows that the vast majority of siblings of children with IDD are only just a little more likely to report psychological problems than other children, especially when we ask the siblings themselves [see http://profhastings.blogspot.co.uk/2014/04/will-siblings-be-ok.html]. Again, there are siblings who face additional stresses but the picture is not as negative as some people make out.

Why should you care about family research?

Here are three straightforward reasons why I think more people should care about family research.

First and foremost, the family is the context for much of development for most of us and that includes people with IDD just as it does anyone else. So, to understand many of the experiences of children and adults with IDD and the influences on their lives we must understand their families. Sometimes, the influence of families (just as for all us humans) can be negative, but of course there are huge positive impacts on later development of a supportive family environment.

Second, following on from the first point, if we want to maximise the life chances of people with IDD as adults and throughout their lifespan, one of the places we can have the most influence is through the family. Of course, in many countries, the other dominant influence could be through school (since children spend a lot of time there…). The family context is the significant one internationally.

Third, family members caring for, supporting or just living with people with IDD do have additional needs compared to family members who do not have members with IDD. The research so far tells us that (see links earlier in relation to parents and siblings, for example). In their own right, they need society’s support but also by “caring for the carers” we can have further positive impact on the lives of people with IDD.

What do you think about family research?

This blog is very much intended to elicit some responses from people out there who come across it. Please do leave comments on the blog or just email me your thoughts (you can find me easily online). A few questions/prompts follow two which you are welcome to respond.

First, do you care about research about families of people with IDD? Are you interested? What has interested you?

Second, it can be hard to get research funding to support family research in IDD (although I must acknowledge thanks to Cerebra [http://www.cerebra.org.uk/English/Pages/home.aspx] for their generous funding to support family research over the coming 5-6 years). Has anyone else experienced this difficulty, or do you have views about this?

Third, what are the priority questions that researchers should be addressing about families of children and adults with IDD?

To finish off, I saw a slightly amusing tweet recently from someone saying they had room on their CV for an award or two if someone wanted to give them one. So, if anyone out there has a few tens or hundreds of thousands (or indeed millions) of pounds/dollars they want to devote to family research, then I have some ideas (and hope to have more from responses to this blog)…

Will the siblings be OK?

At a recent autism conference for parents and professionals, one of the speakers was a clinical psychologist and also sister of a young man with autism. This speaker gave an engaging presentation about being an older sister. Although there were clearly challenges for the speaker and other siblings like her, she ended up suggesting that parents needn’t worry so much because “the siblings will be fine”.

My presentation followed this speaker’s, and I was talking about siblings too. It struck me what a useful summary statement she had made.

I have recently completed a research evidence review about young siblings (children and adolescents who are brothers or sisters) of children with intellectual disability or autism. This has been published by Sibs, and is free to download. The report includes a summary of the research evidence, and some practical and future research recommendations. You can download a pdf copy of the report by following this link:

http://sibs.org.uk/sites/default/files/Young-siblings-research-evidence-review-March-2014.pdf

 

We also have two new research papers about to be published that are also focused on well-being in siblings (of children with autism). You can read the summaries of these studies by following the links below:

http://link.springer.com/article/10.1007/s10803-013-1969-6

http://onlinelibrary.wiley.com/doi/10.1111/cch.12131/abstract

Three different perspectives on whether siblings are doing OK

The two research papers mentioned above are drawn from a larger study of families of children with autism that we carried out for Mike Petalas’ PhD a few years ago now. As a part of the study, we asked mothers to rate the psychological adjustment of the sibling in the family who was the closest in age to the child with autism. We also asked fathers to do the same thing, and to think about the same sibling. Finally, if the siblings were at least 11 years of age we also asked them to tell us about their own well-being.

Mothers, fathers, and siblings themselves all used the same measure of psychological adjustment – the Strengths and Difficulties Questionnaire (see http://www.sdqinfo.org/). This questionnaire measures psychological difficulties (conduct behaviour problems, hyperactive behaviours, problems that children may have with their peers, and emotional problems) and strengths (children’s pro-social, or positive social behaviour). Each of these five domains can be scored separately, and you can also generate a “total difficulties” score by combining the four psychological difficulties domains. The other very useful thing about the SDQ is that it has been used in several large scale studies of British children and so there are data available about what we can expect for typical children in the UK in terms of their psychological adjustment. We were interested in comparing reports about the psychological adjustment of siblings of children with autism with these “normative” data for British children. 

Each of the scores that are obtained from the SDQ can be converted to show whether (or not) a child is being reported as having problems at a level that would indicate some concern about the child’s behaviour or emotional problems. This means we can look at whether the proportion of siblings of children with autism scoring at high (worrying) levels on the SDQ is any different to the proportion of high levels of problems we would expect anyway for British children.

The following graph shows the proportion (%) of a sample of 168 siblings of children with autism whose mothers reported behavioural and emotional problems for the sibling at levels that might indicate concern. So, this is the first of the three perspectives – what mothers say:

There are two points I think are important to consider from these data. First, across all of the domains of psychological adjustment rated by mothers the majority of siblings DO NOT have concerning levels of problems. Second, compared to the normative data (what we’d typically expect for British children generally), siblings of children with autism are no worse off in terms of hyperactive behaviours and problems with peers. However, mothers do report these siblings as having more emotional problems and more conduct behaviour problems (and more total difficulties) than British children generally, and also as having lower levels of pro-social behaviour.

Within the same families, and focused on the same siblings, we also had SDQ ratings completed by 130 fathers. This is the second perspective (the proportion [%] of siblings with concerning levels of problems) – what fathers say:

These data from fathers about siblings of children with autism lead to three key observations. First, again it is important to say that the vast majority of siblings are perceived by fathers to be OK – they DO NOT have concerning levels of problems. Second, fathers think that siblings have fewer problems than do mothers. Third, as with mothers, fathers do report that siblings of children with autism have more problems than typical British children but this turns out to be only for emotional problems and lower levels of pro-social behaviour.

Again, from the same families, 60 older siblings (11 years of age or older) completed SDQ questionnaires about themselves. This is the final and third perspective (the proportion [%] of siblings with concerning levels of problems) – what siblings themselves say:

Three observations again can be made about these data from siblings. First, the vast majority of siblings are NOT reporting levels of problems at concerning levels. Second, siblings themselves report a lower level of problems than that suggested by their mothers and fathers. Third, it turns out that the only SDQ domain where siblings report a reliably higher level of problems than typical British teenagers is for problems with peers.

Conclusions – it depends who you ask

The data from our two research studies also lead to conclusions similar to the research review published by Sibs. Mothers, fathers, and siblings of children with autism themselves all agree that problems of psychological adjustment are by no means inevitable for siblings. In fact, all agree that the vast majority of siblings are doing OK.

Mothers and fathers in particular do agree, however, that siblings of children with autism have more psychological adjustment problems than British children generally. Siblings themselves report slightly more problems than typical young people in the UK, but these differences are not pronounced.

Mothers tend to think siblings have more problems than do fathers, and siblings themselves report even fewer problems. We cannot tell who is “right”; who is giving the most accurate report of siblings’ psychological adjustment. In many ways, this does not matter because the main point is that the answer to the question of whether siblings are doing OK depends very much on who you ask. It is important to get multiple perspectives in any clinical or research setting since asking only one person (mother, father, or sibling) will not give the full picture.

What use is theory to supporting people with challenging behaviours?

In a special issue of the International Journal of Positive Behavioural Support at the end of 2013, my co-authors and I took perhaps the unusual step of beginning a debate on the question of "What is Positive Behaviour Support?" by presenting a model/framework outlining what we know about why challenging behaviours occur in people with intellectual and developmental disabilities.

Whether or not you agree with everything that we weave together into our model, and putting aside the fact that for many dimensions discussed it would be nice to have better quality supporting research evidence, I believe that the world of PBS must start with an understanding such as the model we describe. The reason for this is that it is hard to understand what you need to do (what PBS is, and how you deliver this) unless you understand WHY you are doing it. The WHY is all about a conceptual understanding or an underlying theoretical model. Perhaps what is different about our approach is that the theory and why questions are not focused on the theory OF PBS, but rather a conceptualisation of the "problem" that PBS is designed to address.

The model paper that I am talking about is:


Hastings, R. P., Allen, D., Baker, P., Gore, N. J., Hughes, J. C., McGill, P., Noone, S. J., & Toogood, S. (2013). A conceptual framework for understanding why challenging behaviours occur in people ­­­­with developmental disabilities. International Journal of Positive Behavioural Support, 3 (2), 5-13.

Information about the journal can be found here:
http://www.bild.org.uk/our-services/journals/ijpbs/

Many services in the UK will have received a free copy of the IJPBS special issue on defining PBS so you should be able to access this paper. If you cannot, please email me directly: R.Hastings@warwick.ac.uk


Why should services and practitioners give a monkeys about theory?

The answer to this question is implicit in my introduction above - that to fully understand PBS, you need to understand what we know about why challenging behaviours occur. Once practitioners have grasped the underlying conceptual model, there are some profound implications. One is that so much of the underlying theory (and the practice related directly to the theory too of course) is rooted in Behavioural Psychology. Thus, you cannot have PBS without Applied Behaviour Analysis. PBS IS ABA in many ways, and its roots are in behaviour analysis. A second implication is for those hard-line ABA folks who suggest that PBS is NOT good ABA. Once you look at the interlinking/related factors that might lead to the emergence and maintenance of challenging behaviour (see our "model"), it is clear we are dealing with a complex system. ABA folks have key skills and key roles to play, but their competencies do not cover by any means all of the relevant dimensions.

This point about behavioural theory can also be extended to other theoretical ideas. Once you see the complexity of the system surrounding challenging behaviour in a clear model, it gives people a lens through which to assess the latest fads and ideas. Anyone suggesting a new all-encompassing theory that changes the way services ought to be organised around challenging behaviour is unlikely to be able to capture all of this complexity. In our review paper, we use the example of trauma-focused care. Of course, sensible people are suggesting we should look at trauma-focused models and see what they have to offer developments in PBS and those sensible people do not suggest we throw out everything else. If anyone was suggesting this though, the lens of the conceptual model shows us why this would be an unhelpful position. Some challenging behaviour, not all, might be associated with traumatic events. Some carers, not all, might experience trauma-like reactions to being exposed to serious challenging behaviours. See how the lens works?

We are also used to hearing that to work effectively to support people with intellectual disabilities whose behaviour challenges, we need a multi-disciplinary approach. I'm fed up with hearing this point being used to justify unco-ordinated teams of people doing their little pieces in the life of the person whose behaviour challenges. Defending professional groupings seems to be the priority. However, what these debates suffer from at present is the lack of a Unified Conceptual Framework. If everyone could sign up to a framework such as the one we describe, this would also help to clarify what competencies (not professionals, note) are needed within a team to work together effectively to provide support to those whose behaviour challenges and their families and carers.

How can services use the Hastings et al. conceptual framework?

It is important to start by saying that the conceptual framework we described in our paper is intended as a way to open and inform the debate, not necessarily as a fully comprehensive unchallengeable theory. That would be ridiculous. We do think, however, that we ain't done a bad job of pulling together sometimes unconnected areas of research and practice. Feedback so far supports that position, of course often with various qualifications.

Several times recently though, I have been asked what it might all mean for how PBS services should be designed. I have also been asked what we might need to do to train everybody within intellectual disability services in a way that will ensure better support to those whose behaviour may challenge. My answer is to start with a clear, agreed, conceptual model like ours.

As I'm only a humble researcher, I have restricted my responses then in the following ways. I hope that these thoughts may be useful:

1. Service level organisation. In terms of overall aspects of a quality service, and one that may stand a chance of reducing the likelihood of challenging behaviours emerging, I think the conceptual model gives a good idea of what we need to do. For example, better screening, identification and treatment for physical health conditions is important in a good quality intellectual disability service. It will also contribute to some reduction of the risks of challenging behaviours emerging. Improving friendship networks and general social support is important anyway for quality of life. It will also contribute to some reduction of the risks of challenging behaviours emerging. I won't go through every aspect of the model - I think you get the point. Much of this is not new in terms of what makes a good intellectual disability service. However, the specifics of linking this to attempts to reduce the risk that challenging behaviours may emerge perhaps is more novel. 
2. Assessment and Intervention for Challenging Behaviour. When it comes to then how best to support a person who has already developed behaviours that challenge, I come back again to the conceptual model. For me, it guides what should be a part of a fully comprehensive assessment that then directly informs a multi-element Behaviour Support Plan (BSP).
3. Competencies and Training. If we are thinking about services especially with paid support staff, then this two-level thinking I suggest gives us the building blocks for the design of training relating to challenging behaviour. A broad range of competencies (unlikely to be available via a single professional) is needed to carry out a comprehensive assessment and to design, deliver, and monitor a high quality (and likely more effective) BSP. Training needs to target all of the core competencies and an idea of how to effectively access the rest (e.g., by partnership with other professionals, the person with intellectual disability and/or their family). If we're thinking about what training ALL intellectual disability staff should engage with  under the "challenging behaviour" topic (e.g., the basic induction training), I wonder if the answer may be somewhat different to what many services do currently. So, it seems sensible that we will need to explain what we mean by "challenging behaviour" and greater emphasis probably needs to be placed on the fact that challenging behaviours are defined socially. However, what next? You may be surprised that I would suggest perhaps NOT to explain the behavioural model underlying much of our understanding of challenging behaviour. Instead, what are the key points in the conceptual model that if you could influence across a service would make the largest difference? The answer to this question requires some thought and actually some research, but how about: (a) some coping skills for staff to deal with their emotional responses when challenging behaviours do occur, and (b) some way to increase their empathy with the life situation of people with intellectual disabilities?

Please do extend this debate by leaving comments on this blog