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Identifying higher prevalence of autism in adults: improving services and changing attitudes

Summary of the impact

Autism or autistic spectrum disorder (ASD) is a lifelong neurodevelopmental condition that affects around 700,000 people in the UK. Until recently knowledge of autism prevalence was mainly restricted to children, but in 2007 the Adult Psychiatric Morbidity Survey (APMS) included for the first time a measure of ASD. Professor Traolach (Terry) Brugha and his group developed an innovative methodology to measure the prevalence of autism in adults — previously not thought possible — and found it to be just over 1% of the population studied. The evidence collated by the Social and Epidemiological Psychiatry group has led to a range of actions across central and local government as well as the charitable sector, and since 2010, has transformed diagnostic and support services. It has also improved professional training, changed attitudes across society and reduced the isolation and exclusion that adults with autism often face.

Submitting Institution

University of Leicester

Unit of Assessment

Psychology, Psychiatry and Neuroscience

Summary Impact Type

Societal

Research Subject Area(s)

Medical and Health Sciences: Clinical Sciences, Public Health and Health Services
Psychology and Cognitive Sciences: Psychology

Improving the validity of autism spectrum disorder assessment nationally

Summary of the impact

Our research has had substantial impact on the mental health and welfare of children with suspected autistic disorders, on their education, on the well-being of their families, and on the activities of healthcare professionals and their services for children in both paediatric and psychiatric practice. We developed a new diagnostic test for autistic spectrum disorders, which allows for better, more reliable diagnosis of these conditions. The test has been included in healthcare guidelines and professional standards in the UK and many other countries around the world, including influencing the revision of the Diagnostic and Statistical Manual of the American Psychiatric Association (DSM-5).

Submitting Institution

University College London

Unit of Assessment

Psychology, Psychiatry and Neuroscience

Summary Impact Type

Societal

Research Subject Area(s)

Medical and Health Sciences: Clinical Sciences, Public Health and Health Services
Psychology and Cognitive Sciences: Psychology

Delivering Enhanced Educational Practice in Autism

Summary of the impact

The Autism Centre for Education and Research (ACER) champions the development and implementation of enhanced autism provision for children, young people and adults across England through influencing professional standards and practice. Key examples of the Centre's application of its research to enhance professional practice include:

  • ACER led the development of the Early Years, Primary and Secondary resource content for the Inclusion Development Programmes (IDP)
  • In collaboration with the Department for Education (DfE), the Autism Education Trust (AET) and local authority practitioners, ACER produced a set of National Autism Standards and Professional Competency Framework. As part of this programme, ACER also developed and delivered 3 tiers of related training to over 13,000 school staff by July 2013
  • Contributing to raised awareness of the importance of autism training in Schools at a national level (contribution publically acknowledged by Sarah Teather MP and Birmingham Local Authority).

Submitting Institution

University of Birmingham

Unit of Assessment

Education

Summary Impact Type

Societal

Research Subject Area(s)

Medical and Health Sciences: Public Health and Health Services
Education: Specialist Studies In Education
Psychology and Cognitive Sciences: Psychology

Representing Autism: Using cultural narrative to change medical practice, creative and artistic production, and inform and stimulate public debate of the condition

Summary of the impact

Professor Stuart Murray's research on the cultural narratives used to represent autism has influenced and inflected different areas and beneficiaries, from public health providers to arts companies. This case study describes how his research in particular:

  1. Informed and shaped service provision, diagnosis, understanding and awareness of adult autism in Leeds through interaction with the NHS autism diagnosis service;
  2. Informed and stimulated public discussions of autism nationally;
  3. Inspired and shaped new approaches by Opera North to the artistic representation of autism.

Submitting Institution

University of Leeds

Unit of Assessment

English Language and Literature

Summary Impact Type

Societal

Research Subject Area(s)

Language, Communication and Culture: Cultural Studies, Literary Studies

Changing minds, changing behaviour: drama and autism

Summary of the impact

The AHRC-funded project `Imagining Autism' has had a significant, and in some cases life-changing, impact on the participants and their families, as well as on educational psychologists, charities and experts working in the fields of autism and cognitive functioning. The impacts are two-fold:

  1. Significant and lasting behavioural changes in the 22 participating autistic children;
  2. Revaluation of drama and play-based methods to promote well-being in autistic children, specifically by: educational psychologists and teaching staff at Helen Allison School; the Director of Research at the National Autistic Society; and the Consultant Community Paediatrician at the Children's Assessment Centre, Kent and Canterbury Hospital, along with 15-20 of her staff.

The project has challenged stereotypes and departed from skills-based interventions (which focus narrowly on specific cognitive or social skills, such as counting, or dressing) prevalent in education and health settings, leading to new understandings of the capabilities of a marginalised group. It has demonstrated its capacity to transform lives.

Submitting Institution

University of Kent

Unit of Assessment

Music, Drama, Dance and Performing Arts

Summary Impact Type

Societal

Research Subject Area(s)

Medical and Health Sciences: Clinical Sciences, Public Health and Health Services
Psychology and Cognitive Sciences: Psychology

Robot-assisted Play for Therapy in Children with Autism

Summary of the impact

In 1999 Kerstin Dautenhahn proposed a new multidisciplinary research direction encompassing robotics, psychology, assistive technology, interaction design, human-robot interaction and autism therapy. In 2005 she began developing the humanoid robot Kaspar, whose evaluations suggested therapeutic suitability for children with autism. Ongoing research a) led to the development of appropriate human-robot interaction technology, interaction scenarios and methodological approaches b) stimulated national and international public discourse on robot-assisted therapy for children with autism; and c) informed practitioners' views on using robot technology in autism therapy. A former doctoral student also exploited her Hertfordshire training via an international robotics start-up marketing toys for children with autism.

Submitting Institution

University of Hertfordshire

Unit of Assessment

Computer Science and Informatics

Summary Impact Type

Technological

Research Subject Area(s)

Information and Computing Sciences: Artificial Intelligence and Image Processing
Medical and Health Sciences: Public Health and Health Services
Psychology and Cognitive Sciences: Psychology

Bringing a science of behaviour to the community

Summary of the impact

We addressed a serious mismatch between increasing rates of autism diagnosis across Europe and the shortage of professionals skilled in effective treatment provided by Applied Behaviour Analysis (ABA; www.bacb.com). A parent-lead charity (PEAT) was established in N. Ireland (www.peatni.org); teams from 7 European countries adapted our multimedia training resources (www.stamppp.com); Masters and Certificate level courses were established. Government documents informing policy in Scotland and New Zealand were corrected. Schools and charities in the Republic of Ireland, Poland, and Portugal, and other Masters level courses subsequently appeared in Ireland (http://tinyurl.com/cxpo66m). Simple Steps NI Ltd. was established involving PEAT and Manleys (http://www.manleys.co.uk).

Submitting Institution

University of Ulster

Unit of Assessment

Psychology, Psychiatry and Neuroscience

Summary Impact Type

Health

Research Subject Area(s)

Medical and Health Sciences: Clinical Sciences, Public Health and Health Services
Psychology and Cognitive Sciences: Psychology

5. Cardiff research leads Welsh Government and England’s Department of Health to implement systematic health check for ~250,000 adults with learning disabilities across England and Wales.

Summary of the impact

Adults with learning disabilities (LD) often cannot adequately report illness and there is evidence that treatable illnesses go undetected. As a direct result of Cardiff University research on health checking adults in primary care, the Welsh Government and the Department of Health now provide funding for all adults with LDs across England and Wales to receive an annual health check that employs Cardiff University methods. Current data on take-up (N=78,000 per year) and evaluation of results show that nearly 250,000 adults with LDs have had new health needs identified and treatments initiated during the REF assessment period (2008-2013). Nearly 40,000 adults per year will have new health needs identified and treatments initiated as a result of the health checks, with approximately 3,500 of these being potentially serious conditions.

Submitting Institution

Cardiff University

Unit of Assessment

Psychology, Psychiatry and Neuroscience

Summary Impact Type

Health

Research Subject Area(s)

Medical and Health Sciences: Public Health and Health Services

Achieving change through policy-relevant research: strengthening the provision of health visiting by influencing government

Summary of the impact

Evidence about the need for and provision of health visiting services generated through research undertaken at King's College London (KCL) has underpinned major changes in national policies for health visiting. Our findings about health visitors' practice, availability and distribution of services and effectiveness in terms of parenting/child outcomes, revealed both shortfalls in provision and opportunities for improvement and led to the development of a new caseload weighting tool and funding model for service planning. The accumulated evidence from this research helped convince the UK Government in 2010 to commit to 4,200 more health visitors by 2015 — a workforce expansion of nearly 50% — in a time of austerity and restraint elsewhere in the public sector.

Submitting Institution

King's College London

Unit of Assessment

Allied Health Professions, Dentistry, Nursing and Pharmacy

Summary Impact Type

Political

Research Subject Area(s)

Medical and Health Sciences: Public Health and Health Services
Studies In Human Society: Social Work

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