Professor Richard Hastings is Professor of Psychology and Education and Cerebra Chair of Family Research in CEDAR at the University of Warwick. He carries out research on various topics in the field of learning disability and autism, including: psychological problems in children and adults with autism or learning disability, families, and educational interventions. Richard is currently leading the Cerebra 1,000 Families Study.
In this article he explains the reasons why he became involved in research and why his work is so relevant to the lives of children and adults with disabilities and their families and carers.
“I’m often asked how I got ‘into’ research in the field of learning disability/autism and especially why I have an interest in research about understanding and supporting families of children with these disabilities. I always reply with a story that emphasises serendipity (a great word!), or chance.
I do not have close family members with learning disability, unlike many researchers I have met. My story starts when I was at University. I studied Psychology as an undergraduate because it looked like it would be interesting. Like many Psychology students, I thought I would like to become a Clinical Psychologist. So, in the summer of my second year I wrote to heads of clinical psychology services in areas near to my family home asking if they might have suitable work for me to do. Of course, no-one replied except for one psychologist who said that they were opening a “Locally Based Hospital Unit” for people with learning disability (“mental handicap” at the time) who were moving out of a long stay hospital (this was 1989). I was offered a summer job supporting the assistant psychologist and clinical psychologist working in this new unit.
I had never knowingly met someone with a learning disability before and had no idea what to expect. I was anxious on meeting people, and also frightened as it turned out the people living in the unit had significant levels of challenging behaviour. I was bitten, punched, kicked, and scratched regularly during that summer. At the same time, I enjoyed being with the people with learning disability. This was my first experience of the challenges and also the positives of being with people with a learning disability. I also experienced (looking back) some work-related burnout: feeling emotionally drained, but also being quite negative about people I was meant to be caring for and about their behaviour. I was very young and not prepared for this, and at that time there was no preparation and training to help me understand my role better.
For my final year undergraduate dissertation, I wrote a thesis on understanding self-injurious behaviour and decided to study for a PhD in learning disability focused on support staff working with people with challenging behaviour. I wanted to understand a little of my own personal experience, but especially how support staff thought and felt about challenging behaviour and how this might influence the way that they responded to challenging behaviour.
I enjoyed research so much that I stayed on in the academic world rather than ever pursuing further training to be a clinical psychologist. In carrying out research focused on support staff, it became apparent quite quickly that some staff experienced significant stress when working with people with challenging behaviour but other staff did not and seemed to cope much better. I realised that family carers must face some of the same challenges as support staff would, but that also there would very likely be some differences. This started my interest in family research – beginning with the impact of challenging behaviours on family members’ psychological well-being and how parents in particular coped with these challenges. Although my interest in family research started with that focus on challenging behaviour, I quickly became interested much more broadly in understanding families’ experiences of raising children (and adults) with learning disability.
In both the support staff research and learning disability family research, I noticed three general issues that have then gone on to inform much of the current research that we do. First, working with or being a family member of a child or adult with a learning disability comes with potential challenges and stress and it is important to recognise that and to devise ways to offer support to carers. However, researchers and professionals often get fixated on the difficulties and forget the positive side of working with a caring for people with a learning disability. Much of our current research is focused on positive experiences of paid and family carers, and the recognition that we can experience both negative (e.g., stress) and positive (e.g., joy) things in life at the same time.
The second general issue I noticed and that has informed research is that researchers and professionals again all too readily forget that people with a learning disability are likely to be affected by the well-being of those around them (family and paid staff). It is too often the case that we look at how the person with learning disability (and especially their challenging behaviour) affects their carers. In reality, we are dealing with a system here: people with a learning disability do pose some challenges for their carers as do the stresses of dealing with the (lack of) support from services for the person with learning disability, but equally how carers are doing affects the well-being and development of children and adults with a learning disability. We are now studying these two-way influences especially in our family research.
The third and final general point informing our current research is the lack of the representation of the views and experiences of children and adults with a learning disability in research. So, we know very little about (in research terms) how people with a learning disability understand and think about their family or perceive their relationships with paid carers. Again, this is something we are exploring in our current research.
I hope from this short article that it is possible to see how research and researchers can make a contribution to the lives of children and adults with disabilities and their families and carers. Sometimes researchers ask the questions that no-one is asking, or look at things in a way that challenges some of our assumptions. The latter is illustrate perhaps most clearly by our research looking at the positive aspects of caring for someone with a learning disability. I also hope that it is helpful to see how families and people with a learning disability themselves influence the research agenda. It is worth interacting with researchers since really interesting ideas can emerge from these interactions. My experience being a paid carer in learning disability services has continued to shape the research questions I ask, and many of our best ideas for new research come from talking with family members and people with disabilities. It is my strong belief that children and adults with a learning disability deserve the highest quality research to inform how society should be supporting them in their lives, and this is best achieved by researchers, family members, and people with disabilities talking together”.
You can get involved in the Cerebra 1000 Families Study here.