National Autism Project – Autistic Advisory Panel second meeting

The Autistic Advisory Panel held its second meeting on October 6th at the Friends’ Meeting House in Euston Road, London. It was attended by all the members of the AAP except Dr Yo Dunn and Dr Wenn Lawson, plus Dr Ian Ragan (Project Director), Dr Elizabeth Vallance (Chair of the Strategy Board), Professor Martin Knapp and Valentina Iemmi (both from the London School of Economics and Political Science). After a presentation by Ian Ragan on the project’s progress and activities since the first meeting, the main business of the day was to discuss the outline of the NAP report to be published in January. This was the first opportunity for the LSE team to receive feedback on their proposals for the structure of the report and its main findings. Valentina Iemmi described how the LSE team had worked on its literature review, its consultation with experts including the AAP members, and its methods of data analysis. Recurrent themes from the range of interventions in autism that had been examined were enshrined as four principles (personalised actions, choice and control, addressing inequalities and a life-long perspective) that underpin the recommendations. Endorsement by the AAP of this concept was an important step forward.

Martin Knapp then outlined the proposed main areas of recommendations and their support through case studies of the evidence base. The AAP members discussed the use of language, and recommended particularly to adopt, wherever possible, natural language and to avoid terminology that could be construed as judgmental. These ideas will be incorporated into the final report with explanation of use of language if needed. Since the meeting proposed some modification and restructuring of the recommendations, and these were yet to be agreed by the Strategy Board which was to meet on October 11th (see report on the website), they are not listed here.

In addition, the meeting agreed that it was important for the report to identify interventions for which there was no supporting positive evidence or indeed evidence of harm, and to suggest areas where greater research investment was needed such as sensory and environmental issues; some areas of basic research; and standardised tools and techniques for assessing areas of need and capability.

This meeting came at exactly the right time to ensure that the report reflects the views of the AAP, and especially noteworthy was the positivity of the meeting and the genuine desire to make NAP as effective as possible.

Ian Ragan
November 2016

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