Meeting of Minds 5
A participants perspective
By Andrew McDonnell
This was not my first MOM event and I was looking forward to a diverse presentation of topics that employed a range of methodologies with speakers of international reputation. I was not disappointed.
The topics ranged from wellbeing models to an understanding of the support needs of women with an autism diagnosis and cybercrime with a leading expert from Interpol. Although, I do not like to single out specific speakers, the opening address by Professor Andrew Jahoda set the scene well for the conference. Andrew reminded people of the Quality of Life issues faced by people with intellectual disabilities and identified that person centred approaches are a critical aspect of wellbeing approaches. This dovetailed nicely with Research Autism Richard Mills who outlined some of the challenges faced in measuring wellbeing.
Health issues and comorbidities
Professor Francesca Happe focussed on the risks of mental health issues such as anxiety by presenting data from a twin study. For me the elevated risk of anxiety ( or should we define as stress) in this data was a stark reminder of the need for practical evidenced based interventions in the field. This connected well with Esther DeBruin who described the impact of mindfulness interventions for people on the autism spectrum.
The excellent presentation by Tatja Hirvikovski outlined the elevated risks of suicide in high functioning autism but, also identified by examination of mortality statistics the range of health issues which face the people we support. I was reminded that getting 'the basics' correct is such an important aspect our work. We must focus on improving the health of the people we support. The most obvious candidate should be seeing cardiac exercise as important as medication as a health based intervention.
Experiences of people with autism
A number of speakers focussed on this topic. Liz Pellagrano outlined a qualitative investigation of residential schools in the UK. This portrayed a 'mixed' range of experiences of young people. Critical for me was the focus of the views of these consumers and the role pressure of residential staff who sometimes establish relationships with young persons, with some continuing support aftepr they leave school and others severing contact. Again it emphasised the pressures and demands placed on support staff in these circumstances.
The voice of women with a diagnosis was outlined by Judith Gould who described the results of a European funded project outlining the experiences of a UK focus group. The challenges faced by women were described eloquently by Judith. One of the many outcomes of this project was a documentary that I would recommend all practitioners watch. (https://m.youtube.com/watch?v=E-FvExDAqh8)
The importance of keynote speakers who have a diagnosis was also reaffirmed with the honest, insightful and sometimes funny anecdotes of Aage Sinkbaek. He provides great insights of man who has reached his 'senior years', describing his attempts to understand his autism and adjust to the everyday facets such as accommodating his auditory sensory issues. (This also tied neatly with Judith Goulds comments about the importance of diagnosis for many but, not necessarily all people on the spectrum).
For me the voice of people with autism should always be a crucial component of our understanding. The involvement of people with a diagnosis in applied research is still an area that is in need of development.
The concluding focus of the conference was for me a tour de force Rebecca Ledingham
Displayed a depth of autism knowledge when describing both victims and perpetrators of cybercrime. The vulnerability of people with autism was emphasised by harrowing descriptions of suicides directly caused by cyber criminals. The honesty and candour of Rebecca was refreshing. She outlined the difficult balance of legal consequences of the actions of cyber criminals with the need to focus on autism informed interventions to 'support some of these individuals. A comment by Richard Mills tome personally did outline the vast scale of this.
I should stress that this is very much a personal perspective. I am left with increased enthusiasm that we are making progress in the field. I think professionals can sometimes focus too much on the negative aspects of the experience of autism. I believe that we need to develop our understanding of people with a diagnosis who appear to be thriving and flourishing. How have they overcome their challenges? Did they need professional help? I am always struck by people with a diagnosis who have displayed great resilience, strength and courage. In conclusion, we still face many challenges in this field, but, there does appear to be an emerging consensus. Moving forward we need to deepen our understanding of the challenges that stress and sensory experiences present and focus on positive and adaptive coping responses. This understanding should also evoke empathy and NOT sympathy from people in society.
I hope the next Meeting of Minds event extends our understanding of coping and resilience. In addition the emerging understanding of positive psychological interventions provides a rich area of research. Whilst, I am not one of these individuals who believes that the experience of happiness is the solution of all our problems, it does provide a great insight into our understanding of wellbeing. I reminded of a quotation of the British Prime Minister Benjamin Disraeli who said 'Action may not always bring happiness; but there is no happiness without action'. Let's focus on real action to promote the physical emotional and physical wellbeing of people with autism.
Andrew McDonnell, PhD.
Director of Studio3
By Richard Mills
There is always something special about the Meeting of Minds conferences and this year’s Copenhagen event was no exception. I had been in Tokyo prior to the event and arriving after 26 hours of travel at the wonderfully ‘autism friendly’ Hotel Bella Sky I was not in the best shape. Suddenly the theme of the conference ‘wellbeing’ seemed particularly apt. However, I was soon restored as delegates enjoyed two days of exceptional expert keynotes and important and frequently inspiring debate.
The official opening by the Princess (full title here) was memorable. Well informed and genuinely interested in the topic and theme it is apparent that she ‘gets’ autism, creating the perfect context for Andrew Jahoda’s fascinating opening speech and all that was to follow.
Wellbeing is such an important topic in autism and one where it is easy to get wrong by imposing typical concepts of how people should live their lives. We are also in times where economic pressures are bearing down on the lives of autistic people and their families and people are struggling. At such a time it is important to find solutions are that are achievable and ethical. The conference provided proof that great things can happen if people are positive, enthusiastic and are prepared to be creative and to share ideas. Critically the importance of fully involving the autism community was recognised.
It would be unfair to single out specific presentations as all were of the highest quality and thanks to skilled facilitation by Mette Elmose Andersen, all sparked real debate. Highlights for me were many but the fascinating insights of a life lived with autism by Aage Sinkbaek will stay long in the memory. Similarly, new research presented by Rebecca Ledingham on her work with Interpol on the vulnerability of autistic people to Cybercrime was of exceptional importance and interest.
The more intimate setting afforded by such a smaller venue is recognised by the organisers as more conducive to communication and sharing of ideas and to the development of collaborations and joint projects going forward. A real ‘meeting of minds’ This is a hallmark of these events and highly valued by the delegates. Larger conference events can be alienating for many and deter participation. It is important that everyone, including the autistic participants feel comfortable and as a result everyone is able to take a full part and to contribute.
I feel privileged to have been involved and I am very much looking forward to the next event.
Research Director, Research Autism, London
Research Fellow, Department of Psychology, University of Bath, UK