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COUPS Conference 2016: Autism

The Cambridge Branch of the Open University Psychological Society (COUPS) annual 2016 conference was on the subject of autism. The line-up of the day was impressive, with talks about autism from academics and a therapist working in the field as well a personal perspective from someone who is autistic.

The day kicked off with Dr Steven Stagg from Anglia Ruskin University talking about some qualitative research into the experience of autism diagnosis as an adult. His call for participants attracted adults who had been diagnosed over the age of 50 and he interviewed 9 people. Analysis took a phenomenological* approach and he conducted a thematic analysis** of the interviews. The themes that emerged from the data were: feeling isolated and ‘alien’ as children; a positive experience of diagnosis (all but one person) and a uniformly negative experience of support after diagnosis. This was a thoughtful and important study which highlighted the need for more work in this area and for more access to support to be available for adults receiving a diagnosis of autism for the first time.

Next, was the much anticipated slot of Professor Simon Baron-Cohen from the Autism Research Centre and the University of Cambridge. I’m sure for many of you his work will be familiar. Professor Baron-Cohen focused his lecture around the concept of neurodiversity. Neurodiversity is a concept that is gaining popularity, in no small part due to the Steve Silberman’s book Neurotribes and is the idea that diversity in how people think is both natural and desirable. Professor Baron- Cohen argued that autism should not be seen as a disorder, but as a difference and stressed the importance of recognising both elements of disability and of talent that can comprise autism. He stressed a natural ability for systematising in people with autism and provided an overview of a wide field of research exploring the neurological and cognitive features of autism.

Our first session of the afternoon was Elisa Ferriggi from Think Autism Limited. Elisa is a therapist who works with children with autism and their families to help improve communication. She uses Relationship Development Intervention (RDI) which includes techniques such as avoiding giving direct instructions to autistic children (to allow them to decide and plan action for themselves) and allowing more time for them to process information.

After lunch we heard from David Bottomley and his wife Teresa Benison (together the Beanisons) about the experience of autism and the challenges of living in a ‘mixed marriage’ (David is autistic and Teresa is ‘neurotypical’, hence ‘mixed’). David is an engaging public speaker, he is energetic, enthusiastic and wickedly funny. In this whistle-stop tour through his life he shared his thoughts on how autism affects him (and was very clear that this talk was about him, he did not assume to speak for other autistics), his marriage, his career and his social life. I found David and Teresa’s openness about their struggles and triumphs with understanding each other’s worlds touching and inspiring (see their blog posts about the ‘Hollywood moment’). David loves to be social but finds socialising hard work and his explanations about needing time and space to process his emotions provided an opportunity to stop and think about how difficult day-to-day life can be for someone with autism. For me, this talk was the highlight of the day and absolutely what an autism conference should be about: hearing first-hand from autistic people.

Finally, Dr Rosa Hoekstra from Kings College London presented research into service provision for autism in Ethiopia. This provided a different perspective on the topic of autism. The research highlighted the challenges of researching autism and raising awareness in a low- resource setting with a largely rural and isolated population. She highlighted that 95% of research into autism takes place in high income countries and that 84% of this research happens in North America, Europe, Japan and Korea but that only 10% of people with autism actually live in these places. Dr Hoekstra shared research from Ethiopia where health provision is offered by community health workers (mainly women with some basic medical training). There are typically two workers to 5000 people. There are mixtures of biomedical and supernatural understandings of causes for health issues in Ethiopia so there is a need to work collaboratively with traditional institutions (such as healers) in order to communicate health messages. Her team designed a training package to increase awareness of autism in community health workers. You can access the materials online to see what was included.

The conference was interesting, enjoyable and informative. Thanks COUPS, I look forward to seeing what you will offer up next year!

*Phenomenology comes from philosophy and psychology and places a central focus on an individual’s unique experience of the world. Phenomenological research is fundamentally about listening to someone’s experience, without applying judgments of meaning and letting them guide the interaction.

**Thematic analysis is a systematic approach to the text where you start by identifying units of meaning (e.g. sentences) and as you progress themes will emerge from the data. The themes come from the data and not from an external theory applied to the analysis. By using this process the meaning is generated by the person’s experience, rather than imposed by a pre-existing theory.

This article was originally published on Laura’s blog The Anxious Dodger https:// anxiousdodger.wordpress.com/2016/11/14 /autism-neurodiversity-and-hollywood- moments/

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