Professor Sebastian Gaigg is the Head of Department, Psychology at City St. Georges, University of London. His research broadly seeks to inform how best to promote the quality of life of autistic children, adolescents and adults. 

Prof. Gaigg is co-leading the COMRAD HUB -  the Complex Needs Research and Development Project, which was set up in 2018 with the aim to accelerate high-quality research that meaningfully serves autistic individuals with complex support needs. The CNSG comprises members of the community, researchers and professionals who collectively secured funding under Autistica’s Complex Needs 2019 funding call to develop the COMRAD Hub. 

Prior’s Court is working with the COMRAD HUB. by supplying our staff members for interviews.

Watch a presentation about the COMRAD HUB's work

The COMRAD Hub’s latest piece of work focuses on “What do stakeholders tell us about some of the challenges and solutions to doing research with autistic people with complex needs?”

Read a blog post about this piece of work

Question and answer interview with Prof. Gaigg

1. How many people were involved in this piece of work? And how many from each stakeholder group (family, school staff member, researcher etc.)

That’s actually quite difficult to answer because we involved varying numbers of people at different stages in the project and many of those involved represented multiple stakeholder groups.

For example, the overarching aims of the COMRAD project were initially developed through discussion with a group of around 12 collaborators including junior and senior researchers, many of whom had lived experience of caring for autistic individuals with significant support needs. This group developed the funding application that ultimately made the project possible.

During the project we then worked very closely with multiple staff and parents at three specialist autism schools, including Prior’s Court. We had many, relatively informal, conversations to gain insights into their experiences of research and what they thought it should achieve. We also carried out more formal interviews with 5 Researchers, 4 Family members and 5 school-based professionals to understand current barriers and shortcomings in research in more detail.

In addition, we worked closely with 14 autistic children in the schools, engaging them in what would be considered some ‘standard’ research activities with the main aim of trying to understand how they experience the process and what value it might hold for them.

Finally, we assembled a co-design group of 20 people including researchers, school professionals, family members and autistic adults (many of whom represented multiple stakeholders).

This group met three times in order to develop concrete plans on how to improve research to better serve autistic people with the most significant support needs.

2. What is the next step for this piece of work? And what is the planned timeframe?

One of our key findings has been that there are currently no assessment tools that effectively tell us how best to support language and communication functions for children and that can help to anticipate and therefore prevent children from experiencing significant distress. 

We are therefore now seeking funding to develop such tools which we aim to develop within a 2-3 period, again working closely with families and school communities.

3. Why is this piece of work important and how can the findings be used to influence research benefiting autistic people with complex needs?

Our work is important because at the moment, autistic people with the most significant support needs are very underrepresented in research and as a result we know least about the needs of those individuals who require the most evidence-based support. In addition there is often a gap between research and practice which means that research findings often don’t readily translate into direct benefits for the autistic community concerned.

By identifying current barriers to research and co-developing recommendations for best research practice in close collaboration with the relevant stakeholder community, we hope that our work provides strong foundations for accelerating high quality research that can directly benefit autistic people with complex support needs.
 
4. Looking beyond this most immediate piece of research. How big is the risk that the disadvantages autistic people with complex needs are currently having in so many facets of life being further compounded by the challenges facing completing research in the area?

I think the main risk is that these disadvantages will continue for far longer than they need to.

Without a formal research programme, the care of autistic individuals with complex support needs will remain informed primarily by the relatively isolated observations and experiences of parents, teachers and anyone else involved in their care. These observations and experiences often serve the individual very well because those closely involved in their care get to know the person well and understand what their strengths and difficulties are and what support strategies work well.

The power of research programmes lies in the opportunities they provide for systematically collating these experiences so that they can be shared, accessed, and used to better understand what kinds of support strategies are most likely to be effective for different patterns of strengths and difficulty.

Many schools, including Prior’s Court, already pursue a type of ‘research in practice’ by carefully collating information from multiple staff to enhance care provisions. Additional research can reap further benefits by providing opportunities to scale up such approaches.

5. As there is a significant lack of research how to better support autistic people with complex needs, can this be turned to an advantage? In the sense that with just a little funding and some time, any research at all is therefore a step forward which will be to the betterment of autistic individuals with complex needs? 

I can see at least one advantage – or ‘opportunity’ – given the current lack of research, which is that we can do it well from the start, and with close involvement of the community concerned.
 
One of the difficulties in autism research very generally is that it is often very fragmented with different research groups tackling similar questions using different approaches and methodologies.

On the one hand, such diversity in research can be useful because if similar patterns of findings emerge from different approaches it usually means that an important discovery has been made that can inform best practice across different situations and contexts. However, more often than not, poorly co-ordinated research efforts can yield a very confusing and patchy picture, which slows progress in translating research evidence into tangible benefits for the community concerned.

This situation has been improving a lot over the years and there are now much better co-ordinated research approaches. Together with what we have learned about common barriers to involving autistic individuals with complex support needs in research, I think we have an opportunity to develop a well-coordinated research agenda together with the community concerned in order to make rapid progress in establishing a sound evidence base to inform best practice. 

6. Systemic issues seem to be a big barrier to research in this sector. Such as funding (for research, in SEN, in family support which all lead to a lack of time and capacity) for example. How can researchers overcome this when this is a matter beyond their control?

This is a very important point that came through clearly as one of the key barriers we have identified in our project. We think that there are two ways to overcome this barrier.

First, funding bodies need to recognise that research involving individuals with complex support needs requires significantly more investment so that research teams can offer tangible support to collaborating schools (e.g., in terms of staff resources) and families (e.g., help with travel, home chores, child-care, etc to help offset the burden on their time).

Secondly, and perhaps more importantly, research should ideally be as embedded as possible in existing day-to-day routines and activities so that it poses minimal additional resourcing. 

This would not only make it easier for families and relevant professionals to support research activities, but it would also ensure that research findings more readily inform relevant practice.

Read more from the Prior's Court Research Programme