Over the course of three years (2015-2017), the Shaping Autism Research seminar series (#ShapeARUK), funded by the ESRC: Economic and Social Research Council, was organised by autistic and non-autistic people and aimed at determining if/how we should make autism research more participatory.
In August 2018, a paper reporting on this seminar series was published in the journal Autism.
Although there is a large and growing body of autism research, it doesn’t always influence the community effectively (e.g., by changing how autistic children are taught in schools). “Participatory research” refers to research in which members of a community work with academics, to achieve shared goals. These methods are thought to produce information that is relevant to people’s lives and thus may be particularly likely to have a positive impact on communities.
The published paper describes five topics that were identified, through the seminars, as being important for participatory research in autism: (i) Respect, (ii) Authenticity, (iii) Assumptions, (iv) Infrastructure and (v) Empathy. Further, the paper calls to action for more participatory autism research, including greater autistic leadership of research.
Publication:
Fletcher-Watson, S., Adams, J., Brook, K., Charman, T., Crane, L., Cusack, J., Leekam, S., Milton, D., Parr, J.R., & Pellicano, E. (2018). Making the future together: Shaping autism research through meaningful participation. Autism
You can read the open-access paper here.
This paper is also accompanied by a free downloadable toolkit – A Starter Pack: Shaping Autism Research UK – on participatory autism research to encourage others to work in this way.
It’s here! A Starter Pack for Participatory Autism Research
Interested in making your research more meaningful to autistic people’s lives? Want to do research with autistic people, rather than on or about them? Intrigued but don’t know where to start?
Well, this Starter Pack is for you. In fact, it is for anyone involved in autism research - in any discipline, in any capacity and in any stage of their lives.
It describes how you can begin to genuinely involve autistic people in your research – in such a way that it promotes trusting relationships, is built on mutual respect, and involves listening to, and learning from, one another – that is, being empathetic researchers.
The Pack also provides some practical ideas about how autistic people and their allies can work together in research.
All of the content was inspired by discussions and debates held in Edinburgh, Newcastle, Cardiff and London as part of the ESRC-funded Shaping Autism Research seminar series. And it was made beautiful by the wonderful artists, Ben Connors and Jon Adams - Flow Observatorium, and amazing designer, Adele Jeffs.
Research from A Future Made Together showed that autistic people’s experiences of being involved as a participant in research were not particularly positive and, for some, even dehumanising. During the Shaping Autism Research seminars, we discussed the need to improve participants’ experiences of research, treating them more as humans and less as objects.
One potential way to achieve this goal is to evaluate our research practices through the use of standardised participant questions. Two #actuallyautistic members of the Autistic Space Kit team (and Autscape) independently came up with this idea (Dinah Murray and Kabie Brook) and, together with constructive critical comment from members of the Autistic Advisory Panel to the National Autism Project, and from members of the Participatory Autism Research Collective, the idea was crystallised to the point where it could be shared more widely.
The resulting Standard Participant Question Response (SPQR) is a feedback mechanism for researchers to check participants have understood and welcome the research in which they participated. It consists of THREE simple questions:
1. Now the research is complete, was it what you expected from the original specification?
1 2 3 4 5
Not at all Absolutely
If not at all, how was it different? [open text box answer]
2. Do you think you understand what the point was of this research?
1 2 3 4 5
Not at all Absolutely
3. Are you generally satisfied that you have been treated with respect throughout the process?
1 2 3 4 5
Not at all Absolutely
If not at all, please say how [open text box answer]
Researchers: If you use the SPQR the answers should be anonymised and we suggest you deposit them at UK data service where they will be publicly accessible.
Participants: If you fill in the SPQR your answers should be anonymised and deposited at the UK data service where they will be accessible to researchers.
The Shaping Autism Research seminar series aimed to set a new collaborative direction for the future of autism research in the UK, incorporating the perspectives of researchers, practitioners, autistic people and their families on equal terms. Watch our video to find out more and join the conversation @autresearchUK #shapeARUK.
Keynote lecture by Professor Roy Richard Grinker on ‘The changing values of autism’
We were very fortunate to have Roy Richard Grinker, Professor of Anthropology and International Affairs at The George Washington University and Director of the Institute for African Studies, give not one, but two talks at our ESRC Shaping Autism Research seminar on Autistic Wellbeing - one during the seminar itself and another to a packed-out lecture theatre at a public event, hosted by the Centre for Research in Autism and Education (CRAE) at UCL Institute of Education and the National Autistic Society.
Richard gave a incredibly thought-provoking lecture on ‘The Changing Values of Autism: From Disease to Citizenship in Late Capitalism’, which you can watch here.
Creating comic strips to highlight autistic wellbeing
We were delighted to have illustrator and artist, Ben Connors, to talk about his own experiences - and comic creations - of autistic wellbeing and help us make our own comic strips based on lived/imagined/researched experience. People loved the comic workshop! Here are a few pics of people working on their creations with the help of the Piggie Plot Planner...
Thanks to everyone who was involved in our recent seminar on Autistic Wellbeing, the fifth seminar in our ESRC Shaping Autism Research series. This particular seminar focused on working towards a shared definition of autistic wellbeing (which, as some attendees quickly pointed out, might have been overly ambitious!) and determining how best to measure autistic wellbeing in our research and embed this understanding in our practice.
Susy Ridout and Damian Milton have put together an excellent summary of the two days below.
Following on from the success of the previous seminar, seminar five was attended by around 50 individuals, and over the two days, there was a collection of presentations and workshops by autistic, neurodivergent and non-autistic speakers.
Day One: Towards a shared understanding of autistic wellbeing
The first day began with an orientation by Liz Pellicano to identify the goals of the seminar, namely:
1. to identify collectively a shared definition of autistic wellbeing; and
2. to determine how autistic wellbeing could best be measured in our research and to embed this understanding in our practice.
The two days would then lead into a set of outputs accompanied by examples of good practice.
As with previous seminars, the theme originated from key findings and recommendations emerging from A Future Made Together. These emphasised the importance of autistic involvement at all stages of the research process in order to address relevant priority areas.
The scene was then set by Damian Milton (member of the scientific and advisory committee for Research Autism, research at London Southbank University and Head of Autism Knowledge and Expertise (Adults and Community) at the NAS), with an overview of how notions of wellbeing are constructed in the accounts of autistic people. Damian referred us to his research with narratives from Asperger United, pointing to similarities and differences regarding wellbeing and life experiences. Damian highlighted issues such as social isolation and underemployment, yet also suggested how positive social relationships could aid feelings of social belonging and wellbeing.
Andy McDonnell (Clinical Psychologist and Director of Studio 3 in Warwickshire), Robert Chapman (PhD research student at University of Essex and also teaching Philosophy at Kings College London), Steven Kapp (Research Fellow in Sociology at the University of Exeter), and Sarah Cassidy (the Atypical Development research Team lead in the Centre for Research in Psychology Behaviour and Achievement at the University of Coventry) then each gave a talk leading into a panel discussion around “Quality of life and wellbeing – what do we know about autistic wellbeing?” Coming from a background looking at ‘challenging behaviour’, crisis behaviour and anger management, Andy’s work currently utilises the PERMA model of wellbeing (Seligman, 2011). This provides a focus on Positive emotions, Engagement (flow), Relationships/social connections, Meaning and purpose and Accomplishment. This shifts the focus from what is problematic to what is going well or what works and emphasises emotions, their interpretation and the contextualisation of these. In addition, Andy discussed how a perception of control or self-control leads to increased wellbeing and is a human rights issue. Robert Chapman provided a different perspective, introducing the idea of ethics and flourishing from the inside. Talking of norms and social structures he questioned the spectrum as acknowledgment of functioning or barriers and linked this to debate around intersectionality. Intersectionality relates to our different identities, particularly, though not exclusively, to those relating to matters such as gender, sexual orientation, disability, age and faith group. Steven Kapp then looked at neurodiversity and quality of life experienced by autistics in relation to a range of support, such as social support and subjective wellbeing; parental support in relation to language acquisition and autism acceptance; school support and educational and social (peer) inclusion; and finally systemic support in adulthood. Finally, Sarah Cassidy gave a thought-provoking presentation on the figures in relation to depression and suicide risk among autistics in the UK. She then highlighted a Swedish study into deaths caused by suicide and noted, in particular, the findings showing no gender difference. In addition, studies tend to be more quantitative. There is, however, a high incidence, as well as a gender difference in non-suicidal self-injury with an even greater prevalence among women. In addition, many autistics report the feeling of being a burden and there is a need for more research overall in this area as mental health and suicidality among autistics is poorly understood.
Session three was kicked off by Mark Neary (father of a young autistic adult son, advocate, counsellor and blogger) and Sara Ryan (senior researcher at Nuffield Department of Primary Care and Social Science at the University of Oxford and blogger around the death of her son, Connor Sparrowhawk, in a residential care unit). These inspirational speakers led a fascinating panel discussion speaking on their experiences of the care system and “Social support (or lack thereof) for families and autistic adults”. Mark’s never-ending struggles as a carer fighting the bureaucracy to obtain and sustain a personal budget, on one hand, found him losing out on the other. As a result, he is unwittingly forced to take on the role of administrator to process the tax returns of those that look after his son and provide him with the independent lifestyle that is his right. Consequently, he has discovered the diversity of Council policies regarding personal budgets, with threats if he fails to provide even one small receipt. The paradox is that the autistic individual receives a good service, but the parent does not. Sarah’s experience was entirely different as she talked us through her painful journey where the residential unit that was meant to care for and keep her son safe, failed to do so; leaving him to drown in a bath following a seizure. Sarah views this as her son being “treated as and killed as a disposable human being” and there is a lack of interaction between the carer and the autistic individual that society chooses not to notice. Her son’s death highlights a glaring need for training among staff and the requirement to use more respectful language in commissioning reports. Furthermore, many parents like Sarah experience being demonised due to cultural differences or the fact that they challenge poor services. As a result, Sarah recommends continued challenges to demystify language and processes.
This discussion led to a workshop activity facilitated by Susy Ridout (mentor and academic support worker with autistic students in HE) and Alice Blakeley (children’s nurse currently working on a cardiac unit). The session explored “Barriers and processes impacting wellbeing”, and as a method previously introduced at Seminar 4 by Susy, was interesting in that it brought some of the same and some different people together again to explore ideas using a method that may or may not have been accessible for them. As such it was an excellent demonstration as to why communication preferences require attention when addressing wellbeing. Each group fed back about their work, explaining how the themes were linked as this was very much a work in progress. The artwork and themes raised can be seen here.
Finally, Day One ended with a keynote talk by Roy Richard Grinker. The presentation began by highlighting that in the DSM-5 distress or illness takes the form of some abnormality as reflected by the deficit model. However, autism is rarely talked about in the context of wider categories such as the DSM, and Grinker considers that understanding processes through which autism has emerged and changed over time can be argued to be fetishising. Initially, autism was presented in relation to psychiatry, and then increasingly as regards first-person accounts. He noted, however, that there were no cluster groupings in the past, such as in Ancient Greece. In addition, PTSD only occurs in relation to accounts of war, notably Vietnam and the Persian Gulf War of 1990. Autism has trodden a similar path to that of homosexuality in relation to its presence in the DSM, and Grinker talked about the latter’s recognition as a social construct. Those who identified as autistic/homosexual prior to official recognition were presumably not initially deemed to be a problem before Westernised social constructions were imposed. Grinker then led listeners down a trail where we were introduced to his research with Mandell on the puzzle piece and the notion that a narrative is only useful if it is presented with someone’s experience. As an anthropologist, Grinker questions the use of the DSM.
Day Two: Embedding autistic wellbeing into our research and practice
Damian Milton began the day with a brief summary of Day One and aims for Day Two.
In session 5, Martijn Dekker (autistic father, serving on the board of Autscape and initiator of an international support network for autistics) gave a presentation on Neurodiversity. Martijn pointed to the need for researchers and society more widely to consider the role of politics and belief regarding the facts. Using examples of his own experiences of catatonia and inertia, which result in him being able often only to work productively at the last minute, Martijn then drew us through his travels initiating and leading an autistic online community network (InLv) that was created in the 1990s; this latter provided mutual emotional and practical support to autistics. Martijn highlighted how models are used to simplify reality, for example, the social model of disability to explain catatonia. Finally, there is a need to work towards acceptance and accommodation, which vary according to our individual requirements.
A panel discussion on “How we should measure autistic wellbeing” was then led by presentations from: Helen McConachie (researcher on interventions and currently focusing on therapy approaches helping parents with young autistic children with social communication and also those experiencing high anxiety); Hilde Geurts (researcher on cognition and ADHD and autism across the lifespan, and with a special interest in autism and aging works at the Department of Psychology at the University of Amsterdam and the Dr Leo Kannerhuis clinic); and Alastair Clarkson (Researcher in Residence at Scottish Autism and a PhD candidate in education at the University of Aberdeen). Helen raised the issue as to why we should measure ‘Quality of Life’, and linked this to the development of public policy and public services. As a definition, the WHOQoL (1998) covers the areas of physical, psychological, social and environmental wellbeing. In her study around wellbeing using the Warwick Edinburgh Wellbeing Scale, Helen’s findings showed that 5% lacked the capacity to respond, and so required someone else to do so. In addition, 14% had assistance to respond. The domains covered related to and inclusion autonomy, discrimination. Hilde’s work related to subjective wellbeing; how we study it; and its relation to aging. This type of wellbeing can be both a positive and a negative aspect of life according to our interaction with the internal and external environment. In the 19-83 age range, autistics have a lower QoL than non-autistics due to a number of factors including lack of employment and social isolation. Interestingly, there was no direct link found in her work between QoL and the treatments and interventions that a person had received. Finally, in this panel, Alastair discussed the Support Experience Survey and the need to develop a meaningful survey process for autistics. In his survey, he was looking for feedback for service provision and had seven practice principles. In addition, the survey was both standardised and individualised according to communication preferences, leading to two versions of the survey where some chose to respond using pictures or visual boards to facilitate survey dialogues.
Ben Connors then gave a stimulating talk about his unexpected work as a personal assistant to an autistic young man (Gabriel). Through the building up of a relationship with him, Ben developed comics as a tool for communication and enjoyment. Ben then led a group activity in which attendees were asked to draw comic strips to illustrate what autistic wellbeing means to them and some of the barriers that autistic people face with regard to their wellbeing. Attendees were given guidance in the form of a storyboard pig, A Piggie Plot Planner. The pig had a beginning section, a middle section and an end, just as any narrative. The storyboards were then discussed and shared with the whole group. You can see the wonderful outputs here.
“How can we prioritise autistic wellbeing in our research, service delivery and policy discussions?” was the title for the final panel discussion with presentations by: Monique Craine (advocate, blogger and campaigner on Neurodivergent issues and the inspiration behind the Labour Party Autism/Neurodiversity manifesto); Ginny Russell (Senior Research Fellow at the University of Exeter Medical School); Ian Dale (NAS Head of Monitoring, Research and Evaluation); and Bob Lowndes (Director of the Autism Education Trust). Monique’s avid blogging has resulted in her working with John McDonnell MP and neurodivergent individuals to provide a working definition of autism without using medical terms, and her presentation highlighted this impact through the development of a ‘Neurodiversity Manifesto’. Ginny talked about diagnosis in the context of autism and neurodiversity. As someone working with Patient and Public Involvement (PPI) and grant opportunities, she raised the critical question as to whether ‘patients’ should assess researchers’ funding applications and examined this issue specifically within the context of the European project, EU Aims. Following this, Ian Dale challenged the nature of the Personal Independent Payment (PIP) forms, stating that we need to think beyond the individual. He argues that that the person-centered approach is a formula ‘made-up on the spot’ and that researchers need to be focusing on the potential of wellbeing as a diagnostic tool. Ian argues for change within the delivery of services and policy discussions. Bob Lowndes rounded up this session up stating that researchers need to embed autistic wellbeing into our research and practice, especially that impacting on education and social care. Raising the issue of QoL, Bob spoke of eight domains, namely emotional, interpersonal, material, personal, physical, self-determination, social inclusion and rights and where the routes to these outcomes are distinct. Ultimately, Bob suggested we should be talking about ‘support’ as opposed to ‘help’.
The final activity of the day was a whole group discussion focusing on “What have we learnt and how can we apply it to our own research and practice?” in which people emphasised strongly the importance of autistic involvement in the design and delivery of research and practice – and indeed the leading of seminars just like this one.
Overall, the talks and discussions were incredibly thought-provoking. Although we did not identify a shared definition of autistic wellbeing (which might have been too ambitious an aim!), we did … explore a wide array of topics arising under this theme, which was facilitated by the combination of visual workshops, presentations, and discussions presented by autistic, neurodivergent and non-autistic individuals. As the final part of this ESRC seminar series, the successes pointed towards a more positive future for working together to reshape autism research.
Autistic wellbeing seminar - Fifth Seminar, London
We are delighted to announce the programme for our fifth Shaping Autism Research seminar, which is focused specifically on autistic wellbeing. You can also download the easy read programme here.
Traditional medical models of wellbeing have not always served autistic people’s interests. Recent research and new community initiatives are beginning to highlight the important role that social interactions and social structures play in the wellbeing of autistic people. These range from providing autistic-led spaces to new research on the importance of relationships in shaping the quality of life for autistic people.
The objectives of this seminar are to examine the nature of autistic children, young people and adults’ social relationships, the way advantage and disadvantage is bestowed by society’s understandings of autism, and the ways in which autism research and practice can be restructured to ensure a more social, collective sense of wellbeing for autistic people and their families. We will consider whether traditional constructs, such as quality of life, health-related quality of life, participation, and happiness, can and should be applied straightforwardly to autistic wellbeing.
The goals of this fifth seminar are therefore to:
1. Identify collectively a shared definition of autistic wellbeing (Day One)
2. Determine how best to measure autistic wellbeing in our research and to embed this understanding in our practice (Day Two).
Please note that seminar places are extremely limited. The seminar will not be recorded but you can follow the discussions on Twitter @Autresearchuk, #shapeARUK
On Day One of the seminar, Susy Ridout and Alice Blakeley facilitated a workshop, which sought to help attendees think creatively about what ‘autistic wellbeing’ means to them and some of the barriers to it in relation to processes, power and context. These are some of the things people came up with … clearly a very thought-provoking exercise!
What ONE thing have you learned about autistic wellbeing?
During the second day of the seminar, we asked attendees to consider the ONE thing that they had learned about autistic wellbeing and to write it on a postcard. This activity elicited some fantastic responses! All copied below.
Wellbeing is different for everyone and can be hard to measure and hard to maintain. Meaningful support is key and often it is one-on-one relationship that make wellbeing obtainable
Make inclusion real for all
Autistic wellbeing is a combination of concepts (neurodiversity) and different models (medical and social models)
Thinking that we need to move more towards “disability fluidity” in the same way as sexual/gender fluidity, which is more common, i.e., ‘normalising’ the not-normal
‘Wellbeing’ seems to me to be not worth measuring alone? All the words suggested for items (e.g., ‘happy’, ‘confident’) have interpretations which will vary between individuals depending on their experiences and preferences. It has to be considered in context, including the power relationships which determine opportunities, barriers etc.
Wellbeing is colourful (i.e., multifactorial) and to study/understand it we need different approached combined
I’m very intrigued by the idea of using stories as a way of measuring or describing wellbeing. The power of images and fragments
There is a vital shift in moving from a deficit model of support to a focus on wellbeing - but we cannot expect anyone to be happy all the time
Wellbeing for many starts with methodologies for engagement of individual voice. To ascertain, establish and reinforce the expectation to be consulted and engaged - i.e., ‘being taken seriously’
I liked the multidimensional approaches to collecting data/information. It’s a great chance to learn about different approaches.
We need to keep coming together to review the work that is already underway, i.e., phased according to the life of the Newcastle/Netherlands work and any additional ‘wellbeing’ projects —> pooling ideas and experiences, ongoing developments in thinking etc. THEN feed these ideas into the positivist research community who do intervention and treatment trials
Tensions/push+pull of: biological vs. social, universals vs. specifics, empiricism and postmodernism —> critical realism? ‘Objective’ and ‘subjective’ require mixed methods and expertise
Wellbeing means different things to different people
Threats to wellbeing, different in intensity of impact, knowing how to regroup is essential
I have learnt that the meaning and feeling of welling will differ from person to person, autistic or not
Abandon the pervasive notion that people need to be ‘productive’ in order to be well. This notion is imposed and internalised, but not necessarily try. Emphasise inherent worth
On the surface, autistic wellbeing seems to be an extreme version of non-autistic wellbeing
Wellbeing is elusive, hard to measure, important, not same as happiness, a chance to contribute. Barriers: sense of own burdensomeness, worsened by welfare requirements, you have to be hopeless to ‘win’
I’ve learnt that ‘wellbeing’ as an autistic person (innate) is a human right but not a human fight
Beware neurotypical assumptions! Wellbeing is more than ‘happy’: inclusion, valuing people, respect, listening, acceptance
Autistic wellbeing is important because all people’s wellbeing is important and autistic people are people
That ‘happiness’ is not what I thought it was
I learned of some resistance to the concept to ‘autistic wellbeing’ but apparent consensus on focusing on the individuals
Is autistic wellbeing any different to neurotypical wellbeing?
‘Autistic’ wellbeing … encompasses so many things - specific to the individual, some shared experiences, needs to be informed by individuals
If autistic wellbeing would be enhanced by better understanding, what do we want people to understand? What does being autistic mean?
Wellbeing is a subjective perception of experience. Value on wellbeing cannot be decided by objective ‘outside’ factors
Autistic wellbeing can be very fragile, being reliant on so many factors out of people on the spectrum’s control. Got to measure what it’s not as well as what it is
