National Autism Project – Progress Report – May/June 2016

Since our last Board Meeting in April, we have been working with our partners, Incisive Health, on setting up meetings with funders, government and the civil service to bring them up to date with NAP’s progress. Ian Ragan spoke at the three meetings of the Autism Show in London, Birmingham and Manchester in June. These were great opportunities to promote NAP and to get feedback from a wide spectrum of the autism community on the project, all of which was positive.

In our last progress report, we announced the date of publication of our expert report and the launch meeting in London (October 25th). Plans were also quite advanced for launches in Belfast, Cardiff and Edinburgh in the days following the London meeting. However, the result of the referendum on EU membership has led us to revise these dates. The political uncertainty of the months ahead makes it impossible to discuss NAP with senior politicians and risks launching our report at a time when it would receive little publicity. Reluctantly therefore, we have decided to postpone the publication until some time in early 2017 when the political dust has settled.

Having made this decision, we will use the additional time afforded us to improve the thrust of the report. We had already considered that the recommendations of the report, based on the cost-effectiveness analysis, needed to be supported by additional proposals for how these recommendations could be implemented. This would have required us to look at the structures, systems and responsibilities currently in place in each of the four devolved nations, and to map our recommendations onto these to identify where effort was needed. Within the original timetable for the project, this would have been a difficult task, but now we can devote greater attention to this aspect in the months following the completion of the LSE’s work, progress with which is summarised below. We are now considering setting up workshops or roundtable meetings towards the end of the year in each of the four countries to discuss our recommendations and to define the pathways to implementation.

We are pleased that this proposal has been received enthusiastically by NAP’s members, experts and supporters, and we now truly believe that the project will be all the stronger for this change in plan.

Ian Ragan
May 2016


The economic case for interventions for people with autism
Progress report – July 2016

We are now close to completing the reviews on the effectiveness and cost-effectiveness of interventions in the autism spectrum disorders (ASD) area for both children and adults. In particular, we looking for evidence on: multidisciplinary diagnostic assessment, intensive early interventions, cognitive-behavioural therapy, social skills interventions, vocational interventions, assistive technologies, interventions that support parents and other carers, awareness/anti-stigma campaigns, screening, criminal justice, positive-behavioural support, speech and language therapy, and occupational therapy. New areas have been added to our search strategy, looking for evidence on anti-bullying interventions, active support, health checks, and sensory integration interventions.
We are also continuing to search for datasets from previous evaluations (e.g. effectiveness trials or observational studies) that we may be able to use for interventions for which we cannot find (directly available) economic evidence. Those data will be used in simulation modelling or to examine economic questions in other ways, and it might even be possible to conduct new analyses of the primary datasets in some cases. We are now organising the evidence for each promising intervention identified into draft summaries that will later become our report on those interventions and also support the writing of academic papers.

We have written a manuscript that discusses some of the practical and conceptual challenges in conducting economic evaluation in the autism area, and this has been submitted to an academic journal for possible publication. Over 30 interviews have been conducted with various stakeholders in the autism area (researchers, clinicians, NGOs, policy makers, people with autism and their carers) to better understand issues related to the opportunities and challenges in performing and using economic evaluation in the area (e.g. societal values on which the economic case is built, capturing the attention of decision makers).

The team

Martin Knapp and Valentina Iemmi are leading and conducting much of the work, based in the Personal Social Services Research Unit at the LSE. Margaret Perkins (Research Officer in PSSRU), Anna Rupert (Research Assistant and speech and language therapist), and Dylan Watts (volunteer and carer) are currently assisting on the evidence review. Iason Christodoulou (MSc student), Edwina Frisdiantiny (MSc student and medical doctor) and Eric Koh Hong Wei (MSc student) are currently assisting on the economic modelling.

Martin Knapp & Valentina Iemmi
Personal Social Services Research Unit
London School of Economics and Political Science

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