Mindfulness in the field of intellectual disability and autism: A bandwagon, or a considered development?

Mindfulness is hot at the moment. Mindful meditation as a way to enhance life and well-being is popular in lots of communities, and has been gaining research attention too. Mindfulness-based interventions have also been applied to just about every health and social care “problem” experienced by humans. The evidence base is impressive, including strong results from several randomised controlled trials, and has already resulted in a mindfulness-based intervention (Mindfulness Based Cognitive Therapy – MBCT - for depression) being recommended by the National Institute for Health and Care Excellence in England and Wales.

Mindfulness-based interventions in the intellectual disability and autism fields

Given the reach of mindfulness and its huge popularity, it is not surprising that practitioners and researchers working with children and adults with intellectual disabilities (ID) or autism have started to explore the potential of mindfulness-based interventions with these individuals and their families and carers. Interest is such that Ramasamy Manikam and I were able to guest edit a full special issue of the journal Mindfulness on this population in June 2013. The special issue includes a great collection of papers, including a free download of our editorial:

http://link.springer.com/journal/12671/4/2/page/1

Among the evaluations of mindfulness-based interventions in the ID and autism field, there are examples of randomised controlled trials. For example, Nirbhay Singh and colleagues in our special issue reported on a RCT of the Soles of the Feet mediation intervention for adults with mild ID and problems with anger/aggression (http://link.springer.com/article/10.1007/s12671-012-0180-8). Also in 2013, Spek and colleagues published a RCT of an adapted version of MBCT for adults with autism (http://www.sciencedirect.com/science/article/pii/S0891422212002156). Mindfulness-based intervention for parents and teachers of children with developmental disabilities has also been evaluated using a RCT design (http://psycnet.apa.org/journals/dev/48/5/1476/). So, high quality research designs have been applied to testing mindfulness interventions in the ID and autism fields, and with encouraging outcomes.

Why mindfulness?

It is great to see these results emerging from RCTs, and a range of other outcome studies published in scientific journals in recent years. At the same time, I would caution some more thought about why mindfulness interventions might be suitable for individuals with ID, autism, and their families and carers. Returning to a topic in one of my earlier blogs (see http://profhastings.blogspot.co.uk/2012/12/who-do-you-believe-model-for.html), the evidence for interventions can be thought of as developing through a series of phases. This development does not have to always be linear, but it is very important to be able to articulate theoretical and other reasons why an approach to intervention may be worth trying out and testing in large scale and expensive RCTs. Before we jump on the mindfulness bandwagon, let’s just rehearse some of the reasons why it was worth making the jump…

First and foremost is a point of principle. If good stuff is happening in the use of mindfulness for people withOUT ID or autism, then children and adults with ID and autism should have the same access to the good stuff. Adjustments may need to be made to ensure this access, but it should be happening. Thus, at least in the case of MBCT it is a NICE-recommended treatment for depression in England and Wales. How is MBCT being made available for people with ID or autism? I suspect that most of the time it isn’t. Someone should do some research into that access question.

Leaving that core principle aside, what other reasons are there to think that there is a good match between mindfulness-based interventions and the needs of people with ID or autism and their families and carers. Here are some that I have included in recent presentations:

·      Individuals with ID or autism, and their family members (especially parents) face some real and ongoing challenges, stresses and strains in life. These manifest in increased risk for psychological problems in individuals themselves and their parents. The challenges are persistent – some of the difficulties cannot really be taken away or will take a very long time to be fixed in society at large (e.g., poverty, societal negative attitudes). So, one-off “fixes” are not likely to be helpful. Instead, supports and interventions that help to build resilience are needed so that people have some skills to cope with new or increased challenges as they emerge in the future. This is also partly about empowerment – making sure people have skills to enable them to control their own environments rather than being continually dependent on others for help and support. Mindfulness is not about fixing problems, and so is a good match with the need for resilience to cope with life. In addition, mindfulness-based rely on “training” new skills or new ways to approach things and in this respect they can be seen as empowering.

·      Already hinted at is the notion that mindfulness interventions do not come from a pathological stance but are more focused on positive lifestyle change. Given that ID and autism are not “problems” in themselves to be “fixed” then again this is a good match with the orientation of much of the philosophy of services supporting people with ID or autism.

·      There is some research suggesting that increased dispositional mindfulness (i.e., in general, you are a more mindful person) and situational mindfulness (especially, more mindful in the parenting role) are associated with better psychological adjustment (lower stress, less depression and anxiety) in parents of children with ID or autism. The implication is that targeting increases in mindfulness could then be a way of improving outcomes for parents.

·      Research evidence also suggests that coping with stress using avoidance strategies is associated with poorer psychological adjustment for parents and increased chances of burnout or work stress for support staff in ID/autism services. Thus, interventions that reduce avoidant coping are likely to lead to positive outcomes for parents and staff. Again, mindfulness based interventions tackle avoidance head-on and encourage engagement with difficult thoughts and emotions (pretty much the opposite of avoidance).

·      Some specific problems faced by individuals with ID or autism might also be a good conceptual match with mindfulness-based interventions. In particular, challenging behaviours can often serve the function of changing aspects of the social environment that a person with ID or autism finds difficult/aversive. The ability to regulate emotional responses, and sometimes to increase tolerance for discomfort could help to reduce the chances of challenging behaviours occurring (and their associated impacts on others and the person themselves). Mindfulness-based approaches could be a good way to help people regulate emotions in particular. In addition, carers find challenging behaviours aversive to deal with and a real challenge is to work out how to reduce the chances of carers responding to their own strong emotions and instead to act in a way that will be less likely to maintain challenging behaviours over the long term (see http://profhastings.blogspot.co.uk/2013/05/winterbourne-view-will-happen-again-and.html). Mindfulness-based approaches are likely to be helpful for staff/carers in this situation.

I could go on with some more ideas, and hopefully you will have ideas of your own. However, the main point is that we must be able to articulate WHY mindfulness-based interventions might be a good idea to use in a particular context in our field. Simply jumping on the mindfulness bandwagon will do a disservice to the people we work with and their families and carers.

It is also clear that there is a significant research agenda still to be addressed in relation to mindfulness and ID or autism even before we generate high quality research evaluations of intervention outcomes. For example, research on the relationships between mindfulness-related processes and well-being in people with ID/autism and carers is needed, as is research on how we measure mindfulness in people with ID and autism. There are also the challenges of what mindfulness might mean for people with more severe ID – is it still a relevant concept, in what ways, and what might mindfulness-based interventions look like for these people.

Hopefully, what we have so far is just the beginning of a long story…