Summary of the Public Services seminars: trying to find a ‘lingua franca’ …
The Newcastle and Cardiff Public Services seminars brought together researchers, autistic people and family members and service professionals working in government, NHS, education and charities.
Our first goal was to create an opportunity for engagement, and forge new partnerships. We know that people from these communities tend to operate in separate worlds. So we equalised the numbers attending from each community - being able to bring people together across the two days to talk about the same questions was itself an accomplishment! Across the two days of each seminar we heard different views, different interpretations and debate. But we also saw real connections emerge, and attempts to understand and share a common purpose. Engaging with those who have different views and experiences can lie outside our comfort zones and this was a learning process. As Lynda Morgan points out in her comments, the different groups each have a different vocabulary and a different culture – but a real desire to make progress toward a common goal – that of improvements in people’s lives. There was a sense that we were trying to find a ‘bridge language’ (what is called a lingua franca) so we could communicate with each other to achieve a common level of understanding amongst the difference.
In the words of one of a Newcastle delegate: ‘Autism research is very important to our community. Partnership working is essential. Invite everyone to join the partnership. Listen to adults with autism. Researchers sometimes are not told or see the bigger picture. Events like this can support researchers.’
These meetings will contribute to our planned output for the seminar series – to develop a set of principles for working together.
Our second goal was to generate ideas about future research. What should researchers be researching? We know that many people want research to focus on what directly impacts them in everyday life but given current public service provision, what should this future research actually look like? We hoped that autistic individuals and family members would advise researchers about this. Some important themes came out of the Newcastle seminar to think about. These themes included issues of difficulty in accessing services, the need for advocacy and who is best placed to support adults access services, the lack of professional awareness/understanding of ‘reasonable adjustments’ and poor quality of life for individuals. Themes also included how to go about new research including partnership working and learning from other models. So we built on these themes at Cardiff and included panels talks and small group discussions around them (see presentation slides and small group discussion summary for examples).
At both Newcastle and Cardiff we also asked attendees directly about what research issues they wanted to know more about. At the end of Day 1, we set everybody the task of completing a sentence “One thing I want to know more about is…..” by writing their priority on a card and posting it in a box. We have summarised the answers separately but as an example, the main headings that emerged from the Newcastle and Cardiff seminars were: Outcomes for autistic adults, Research priority setting, Learning from other sectors, Data sharing and working with public bodies, Diagnosis and diagnostic services, Support services and what they should do, Factors that affect life in adulthood, Attitude change and reasonable adjustment, Prevention of crisis and negative outcomes, Practice guidelines and policy, Mental health and quality of life, and Next steps from the seminars.
Although both seminars were so worthwhile and we received lots of really good feedback, I’m sure you won’t be surprised to hear that organising them presented a challenge. First, what were we going to talk about in these seminars? The topic of public services just seemed endlessly vast and hopelessly unpromising as a prospect. Given the political and economic situation in public services what could we expect of “future directions” for research except in our dreams? And how should we carve up the topic of public services – we just couldn’t cover everything. Second, who were we going to invite? And who were we not going to invite given that we each had only 40 or so invitations to represent all these different stakeholder groups? So the challenge of how to prioritise and how to represent were issues that vexed us, along with the challenge of managing within a limited budget.
We thank our colleagues Peter Beresford and Damian Milton and the rest of our team for advising us during those early discussions and we arrived on a theme of adult services for Newcastle and young adults and children for Cardiff with a focus mainly on health and education. We also thank Paul Shattuck, Patricia Howlin and other innovative panel contributors and speakers, for showing us that there is reason to still be hopeful about what can be achieved in public services and how research can help. They showed us that it is possible to generate innovative solutions and exploit existing opportunities (even without extra money) that can improve living experiences for autistic individuals and help practitioners and families. You can read examples of this approach amongst the power point presentations on this website and on the Autism Research Policy Practice Hub site.
Before finishing we add a note about our need to improve our learning from one seminar the next. Looking back at the comments from Edinburgh’s Autism Practice seminar, by Kabie Brook, we were able to respond to some of the suggestions raised there. For example, as advised we paid attention in small group discussions to how research may inform practice. We also increased the number of autistic adult representatives and parents at the seminars (although despite long and hard searching for many months, were still unable to find more autistic researchers). We ensured that a substantial number of autistic adults and parents gave presentations (though we also learned that in future that we should allocate more time to such presentations). We ensured there was adequate opportunity for discussion, and for autistic people to ask professionals about the most challenging questions and topics. What we did not do is to pay attention before the seminar to Kabie’s careful summary of how interaction badges work. Though we got it right after the seminar started, the information was all there so we should not have missed it beforehand.
Also we were able to reflect on the kinds of autism-friendly features and autism accessibility advice that we incorporated into the seminars. Although we included these adjustments after consulting with autistic representatives from Edinburgh, Newcastle and Cardiff, they not suitable for everyone, and other adjustments would have been preferred by some. This reminds us of individual variation in autism and the difficulty of creating a ‘one solution fits all’ approach to either seminars or services for people on the autism spectrum.
Thank you to everyone who contributed to both seminars. We look towards to new directions in research as prioritised by the whole community, and to working effectively in partnership in the future.
Sue Leekam and Jeremy Parr, March 2016
You can read further background and articles about the topics for the ESRC Autism Public Services seminars and the earlier Autism Practice seminar on the Autism Research Policy Practice Hub.
Please send us your comments on this summary. We are sharing on this site drafts of each of the proposed main seminar outputs, as .doc files, and inviting commentators to send us their feedback by posting in the comment box for each document post or using Google Docs to share comments.