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.
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).
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:
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:
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:
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.
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.
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).
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.
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.