Authors: Helen McConachie and Colin Wilson
We are Colin Wilson, autistic self-advocate and health researcher, and Helen McConachie, research psychologist. We worked together on a study of the quality of life (QoL) of autistic people, looking in particular at how QoL can best be measured. In this blog, we focus mainly on the discussions held with autistic people in four countries.
Why was this study done?
‘Quality of life’ refers to how satisfied a person is with their life now, taking into account their experiences and the conditions in which they live. There exist questionnaires for the general public to rate their QoL, but these may ask questions in ways that are not important or relevant for autistic people; for example, some autistic people have few or no friends, but are fine with this.
What was the purpose?
Many research studies use the World Health Organization Questionnaire (WHOQOL-BREF for short), which asks about psychological, physical, social and environmental QoL; sometimes an optional WHO Disabilities questionnaire is added in, looking at autonomy, discrimination and inclusion. We wanted to try to understand if all these questions were important and relevant to autistic people from different countries and cultures. We also wanted to find out if autistic people thought there were important topics missing from these questionnaires.
What did the researchers do?
We held nine consultation groups about the WHO questions, with 38 autistic people in four countries: United Kingdom, Singapore, Australia, and Argentina. One group included people with intellectual disability. Colin was one of the UK group leaders and helped devise a structure that enabled people who did not know each other before to collaborate in discussing the issues raised in the questions. Then Colin, Helen and two other members of the research team read the typed-out transcripts of the discussions several times to find common themes, especially what seemed particularly relevant to autistic people, or topics and experiences that were missing.
What were the results of the study?
Autistic people we consulted thought that most of the existing questions of the WHOQOL were important, though a few questions were hard to understand. For example, one asks ‘How satisfied are you with your personal relationships?’. People commented that ‘personal relationships’ was not a clear concept: did it include family or not?; were friends included (because there is a separate question about friends)?.
Around issues such as employment, there were very interesting discussions about the pressure of disclosing a diagnosis and of asking for support, and also having to ‘fit in’ in the workplace. Some people said they were ‘underemployed’ given their experience and qualifications, in order to avoid extra pressures. International groups had similar discussions, but in addition discussed lack of job security; they had gravitated towards their job since it was more autism friendly, but now felt under threat from automation. Lack of financial stability around benefits and the cost of living were also discussed across all groups as a barrier to good QoL.
From the discussions, we found thirteen additional themes that were identified as particularly relevant to QoL, including being positive about one’s autistic identity, other people’s (lack of) knowledge of autism, sensory issues, mental health difficulties, the nature of friendships, and supporting other people as carers or volunteers.
What we did next.
In a further phase of the UK research, and through surveys and consultation with autistic people, we tested the wording of nine additional questions. These were derived from the themes outlined above.
About a question on sensory issues, people said:
‘This is vital. I cannot leave the house without having severe issues every day.’
‘I am delighted to see this question – I have never seen another questionnaire that considers it important.’
About a question on autistic identity, people said:
‘It’s nice to be asked that, to have the opportunity to say “yes” to it and wave the “autism is cool” flag. It allows autistic aspects to be seen as positives, not as a “disability label”.’
‘I was extremely ill at ease with myself before diagnosis. Now I am very happy being me.’
‘I may be OK with my identity, and yes I am, but I feel I have to cover it up sometimes because of others, which makes me not at ease under those circumstances.’
How will these findings help autistic adults now or in the future?
Having good QoL is central for everyone. Our findings suggest that some topics highly relevant for autistic people are not included in QoL questionnaires developed for the general population. When measuring QoL it is important to know that the tools you are using are valid and appropriate for the groups you are working with. This study suggests it will be important and possible to develop a set of internationally-appropriate questions for autistic people to add to the existing WHO QoL questionnaires.
What we hope for the future is that, by adding on autism-specific questions to the WHO QoL questionnaires, researchers and health workers will be able to measure accurately the QoL of autistic adults, and judge how helpful supports and services are in improving their QoL.
What were your experiences an autistic advocate on the project?
Colin: This was my first experience of working with researchers and came quite soon after I received an adult diagnosis. I came into the project not really knowing the value of questionnaires as outcome measures, but my previous involvement in autistic advocacy had been in campaigning for local services, so understanding how you can collect evidence about needs and about the value of services was very useful. As a collaborator with a research team, you help shape the research, ensure it is asking the right things, and help interpret the results and ensure autistic voice and experience flows throughout the process.
As a community, some of the discussions about language and identity can be difficult and are evolving, but throughout the discussion groups it was evident that adopting a positive autistic identity was an important factor in QoL for many people. One of the other things that struck me during this project was how many autistic people rated their quality of life based on how well they were able to maintain the living standards and happiness of their loved ones, which is something important for future investigation.
Across all nine consultation groups, autistic people told us how much they enjoyed meeting others with shared experience; many had not been in a room with other autistic adults before and there were several moments of happiness when one person realised that someone else had a similar sensory profile, or had a similar experience dealing with tough situations at work. It was really nice to see some of these intangible benefits from research, and I aim to help bring this experience to other projects and in my own work.
We want to thank the research funders, Research Autism and the Shirley Foundation, the imaginative and hard-working research team, and all the enthusiastic autistic people who took part and advised us on the research. For more information see https://research.ncl.ac.uk/neurodisability/ourstudies/recentlycompletedstudies/