National Autism Project – Progress Report – January/February 2016

Two important events of early 2016 have already appeared on the website: the second meeting of the Westminster Commission (under NEWS) and the first meeting of the Autistic Advisory Panel (under EVENTS). The latter is continuing to generate valuable discussion on the thorny issues of terminology, and the meaning of “effectiveness” and “cost-effectiveness” in the context of autism. These discussions will contribute significantly to the quality of the Expert Report.

Ian Ragan was invited in February to present NAP to the Advisory Group of the All-Party Parliamentary Group on Autism (the AAPGA) which was a welcome opportunity to ensure awareness of NAP in this important body and to road test some of our current thinking with a group of experts. Every opportunity such as this refines our ideas and messages about NAP.

In the background we continue to conduct interviews with our panel of Experts and hold meetings with individuals and bodies who may in the future be instrumental in taking NAP’s recommendations forward into practice. In addition, we have made much progress in selecting public affairs organisations to bid to run our political and media campaign. Applications from a number of organisations have been received. A final choice will be made at our Strategy Board meeting in April with the intention that the selected company starts work in May 2016 on a campaign to run until the end of 2017.

Our collaborators at the London School of Economics and Political Science describe their progress below.

Ian Ragan
March 2016


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

We are continuing to conduct rapid literature reviews on the effectiveness and cost-effectiveness of interventions in the autism spectrum disorders (ASD) area for both children and adults. In particular, we are continuing to look 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, positive-behavioural support, speech and language therapy, and occupational therapy. We are now adding new areas to our search strategy, looking for evidence on screening and criminal justice. Searches are conducted in specialised databases and websites of key organisations.

We are organising the evidence into tables to summarise key information: name of the intervention/approach, country(ies) where evaluation has been conducted, who the intervention is for (e.g. type of ASD diagnosis, level of learning disability, age group), description of the intervention itself, setting (e.g. school, health clinic, at home), components of the intervention (e.g. different therapy types), evidence on effectiveness, evidence on cost-effectiveness, and information on costs of delivery. This information is then underpinning our discussions with experts and also helping us to select interventions for which we will examine the economic case.

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 also continuing to explore ethical issues (broadly defined) in the ASD area and their economic implications. The identification of ethical issues could help us select the interventions for which we will examine the economic case, the design of the economic models, and the interpretation of results.

We are starting to discuss how to examine the economic case for each promising intervention identified. In particular we are starting to identify interventions for which economic modelling will be possible, because the necessary parameters appear to be available from previous studies or in datasets that we can access.
We are starting to organise the evidence in two key areas (intensive early interventions, cognitive-behavioural therapy) into draft summaries that will later become our report on those interventions and also support the writing of academic papers.

We are finalising a manuscript to report the findings from our exploration of the practical and conceptual challenges in conducting economic evaluation in the autism area, and that will also contribute to the design of our empirical economic models. 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).

We are continuing to consult with a number of experts to find out about research currently underway, to understand the relevance and significance of the preliminary findings of our rapid literature reviews, to explore the relevance of emerging interventions, and (later) to identify some of the parameters needed for our own analyses.

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.

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

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