#shapearuk

[shapingautismresearchuk]

New Publication: Shaping Autism Research UK

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.

[shapingautismresearchuk]

Watch the ShapeARUK video

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.

[shapingautismresearchuk]

Really love the autism friendliness thought which has gone into the planning of this seminar. Other events could learn from this!

[shapingautismresearchuk]

What does ‘participation’ mean to you?

On Day One of the seminar, Susy Ridout facilitated a workshop, designed to help attendees communicate and express their thoughts on ‘participation’ by using everyday materials. These are some of the things people came up with ...

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Check out the transcript from the recent Shaping Autism Research seminar

[View the story "Shaping Autism Research in the UK" on Storify]