Most autism practice not supported by good evidence, finds study

Opportunities to improve the lives of autistic people are being lost because practice is insufficiently evidence-based, writes Yo Dunn

Photo: Momius/Fotolia

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. 

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3 Responses to Most autism practice not supported by good evidence, finds study

  1. Devendra Srivastava January 17, 2017 at 11:30 pm #

    I found this article very interesting. I myself have autism. Also I work for a social media network website called Imuneek which is for people with medical conditions and disabilities.

  2. Londonboy January 18, 2017 at 8:20 am #

    Thank you Community Care. This is a very good and accessible study. Whilst pointing out that research has been very neglected even though the case for it is extremely strong, the report’s authors does identify some programmes and interventions that have been evaluated as having positive benefit. This is likely to be very useful to social workers and CCG’s when looking for good programmes.
    On a similar note I wonder if anyone ( who dos’ent make a living from,) has evaluated ‘Attachment Disorders’ in a similarly rigorous way?

  3. Londonboy January 18, 2017 at 1:36 pm #

    In relation to children it is also worth pointing out that the Autism Act does not apply to children.
    It is also worth considering that ”Up to three-quarters of autistic people experience additional mental health problems. Amongst children and young people, the most common are: anxiety, attention deficit hyperactivity disorder (ADHD) and irritable/noncompliant behaviour (concerning behaviour)”
    I would like to see a LAC health study that helps establish by percentage how many children in Care with emotional and behavioural difficulties have autism. (estimated from local studies at 5-7%)
    I suspect the numbers are much higher than anyone working in the children’s care sector believes to be the case. This really does matter because help around ‘trauma recovery/poor mental health’ could be much more effective with the right understanding and sensory and communication needs could be better identified and met – All this is likely to lead to significant improved in an autistic child’s life.
    Sadly this discussion has been drowned out to date by ‘specialists in attachment theory’ hence why an examination of evidence for the value of attachment based intervention is essential.