Most autism practice not supported by good evidence, finds study

By Yo Dunn

“Nearly a decade on [from the Autism Act] the needs of autistic people are still unmet”, according to the report of the National Autism Project, published today.

The report finds that most current policy and practice is not supported by good quality evidence of benefit and cost-effectiveness. This leads to a loss of opportunities to substantially improve quality of life for autistic children and adults and their families whilst also potentially reducing costs. “A great deal more could and should be done to generate evidence to shape policy and improve practice in autism.”, the report argues.

Filling knowledge gaps

The National Autism Project, funded by The Shirley Foundation, has been bringing together “evidence on what works well for autistic people and what makes economic sense”. The report calls for urgent investment in good quality research focused on filling gaps in our knowledge of which types of support are most effective by asking questions such as:

• Does it meet needs, improve functioning or improve wellbeing?
• Does it do what autistic people or parents believe will be of help and not harmful to them?
• If the intervention is intended to be preventative, does it actually reduce the risk of illness or other unwanted outcomes?
• Does it make economic sense? Is it feasible, affordable and cost-effective (meaning the outcomes achieved are sufficiently important to justify the necessary resources)?

The project’s research, carried out by a team at the London School of Economics and Political Science, analysed existing evidence on a wide range of possible ‘interventions’ for autistic children and adults including: screening and diagnostic assessment; early interventions; social skills programmes; parent training and support: CBT for anxiety; employment support; health checks; personalised care and support (including personal budgets and circles of support); assistive and adaptive technologies; anti-stigma and anti-bullying work, and medication.

Key recommendations for social care

Many of the report’s policy recommendations, which were refined during workshops held in each of the four nations, are relevant to social care. They include:

• The need for public bodies and service providers to participate in good quality effectiveness research into services and programmes currently commissioned for autistic adults and/or children and their families.
• The need for commissioners to consider to what extent the claims of service providers are borne out by objective research evidence which considers the benefits or otherwise that services actually have on the lives of autistic people.
• Endorsement of the importance of person-centred models of support in work with autistic people.
• Recognising the additional barriers faced by autistic people in accessing appropriate care and support compared to the general population. The report points out “autistic people generally have more health problems than other people, and a higher risk of premature death”.
• The cost-effectiveness of early and preventive support.
• The need to overcome ‘silo budgeting’ which fails to invest in effective interventions in one sector (eg social care) which reduce costs in another sector (eg health). The report does not propose systemic changes or service integration, but rather “proportionate coordination – creating the means by which different organisations and the professionals within them can work together to find pragmatic solutions for individual autistic people”.
• The need to recognise the impact of environmental stressors, uncertainty and anxiety on behaviour which causes concern and to invest in community support if any long-term progress is to result from the Transforming Care agenda to reduce the number of people in institutional settings.
• The importance of good transitions, including the need to prevent foreseeable crises (such as the eventual death of a parent primary carer) “by ensuring that a full assessment of needs is in place”. The report points out that, despite the Care Act, “there is a widespread lack of implementation” of social care assessments which actually recognise and set out the full needs of an adult, whilst most of those needs are still being met by an informal carer.

Overall, the National Autism Project report argues that “better informed decision making and wiser allocation of resources” could reduce the negative personal, social and economic consequences of “the cumulative disadvantages experienced by many autistic people over their lives” and lead to an “autism dividend”.

Yo Dunn is a social care legal framework and autism trainer, consultant and researcher. She is autistic, a parent of autistic children and a member of both the expert group and autistic advisory panel for the National Autism Project.