Wales Autism Research Centre: Ten milestones for ten years

As the Wales Autism Research Centre (WARC) celebrates its tenth anniversary, we look back at the ten key milestones that made the centre a success.

WARC was officially launched in September 2010 by founder, Professor Sue Leekam, and was the first national centre for autism research in the UK. Since then, WARC has become a leading research centre that has established a strong reputation for translating research into policy and practice. In April 2019, Dr Catherine Jones took over as Director.

The team at WARC have selected ten key events, occasions or achievements that have been pivotal to the success of the centre.

1. Increasing awareness of autism signs: The Birthday Party film

WARC worked with the Welsh Local Government Association's National Autism Team to develop The Birthday Party, a training film for frontline professionals. The film uses the occasion of a child's birthday party to describe how the SIGNS of autism present differently in three children. Importantly, these signs are based on research conducted by the team at WARC.

The film is used in training and awareness raising nationally and internationally with organisations such as the Welsh Local Government Association, National Autistic Society, and the NHS using it. It has been translated into six languages - Italian, Latvian, Lithuanian, Spanish, Welsh, and French, and has been viewed over 83,000 times.

2. Moving to the Cardiff University Centre for Human Developmental Science (CUCHDS)

In February 2018, the Cardiff University Centre for Human Developmental Science (CUCHDS) was launched and WARC joined as one of its research centres. Being part of CUCHDS has strengthened WARC's work through collaborations with a range of experts in developmental and health science.

Collaborations include the Neurodevelopment Assessment Unit (NDAU) and the Coordination, Movement and the Brain study (CoMB), both funded by The Waterloo Foundation, with additional contributions to the NDAU from the Economic and Social Research Council (ESRC). WARC benefits from CUCHDS' state-of-the-art testing facilities, which are suitable for people of all ages.

3. Working with Welsh Government and clinical services

WARC was set up as part of the Welsh Government’s 2008 Autistic Spectrum Disorder (ASD) Strategic Action Plan. This unique link with Government has remained at the heart of WARC's work and members regularly contribute to Government advisory groups.

Highlight 1: Supporting professional practice in autism diagnosis

The DSM-5 is the international classification system used by clinicians in diagnosing autism. WARC’s research helped clinicians to apply this system by designing an algorithm to be used with the Diagnostic Interview for Social and Communication Disorders. This algorithm is used in training clinics across the world by the Lorna Wing Centres in the UK.

WARC also developed a coordinated set of diagnostic and awareness raising methods. These were adopted nationally by the Welsh Government’s Adult Diagnostic Service (now the Integrated Autism Service). Key items from the interview algorithm were also incorporated into the Birthday Party film and into posters distributed to all GP surgeries in Wales.

Highlight 2: Promoting inclusion in access to services and support

In 2016, WARC hosted a seminar on public services as part of unique series of Economic and Social Research Council (ESRC) funded seminars that explored the importance of involving the views of autistic people and their families in shaping research. The Cardiff seminar focussed on how to develop more effective public services in partnership with the autistic community.

The seminar was influential in highlighting disparities in services and in considering changes needed to both research and public services agendas. Findings from the seminar were also published: Making the future together: shaping autism research through meaningful participation.

4. Understanding behaviour and diagnosis

WARC carry out work to support and improve the diagnosis, recognition and understanding of autism, which includes clarifying the nature of the autism spectrum. For example, the individual variation seen within autism and the overlaps between autism and other neurodevelopmental conditions (e.g. Attention Deficit Hyperactivity Disorder).

The team also explore the relationship between core autistic features and co-occurring features (e.g. anxiety and mental health), as well as investigating the post-diagnostic pathway for autistic children and how this might be improved.

Highlight 1: Autism questionnaire development

WARC developed the first adult self-report measure of repetitive behaviours, the Repetitive Behaviour Questionnaire (RBQ-2A). The RBQ-2A successfully discriminated autistic from non-autistic people and can support the diagnostic process. They also developed the Signposting Questionnaire for Autism (SQA) and tested it with parents of children across Wales and Latvia. It performed well at identifying autistic children in both countries. The SQ-A is recommended for front-line professionals, such as teachers, to give insights into patterns of behaviour that may affect everyday functioning.

View our papers on the RBQ-2A and its further development, as well as the SQ-A.

Highlight 2: Understanding and improving the care pathway for autistic children

View our care pathway for autistic children paper.

5. Understanding biological and cognitive processes

The team at WARC are interested in the ways in which autistic people think and perceive the world compared to non-autistic people. They are investigating how social signals like faces and eye gaze are processed in autism, including exploration of the brain signals that underlie these processes, as well as how well autistic people understand other peoples’ minds.

Using the purpose-built sensory room, WARC have also been exploring how autistic children use sensory rooms and respond to sensory stimulation. The team are also interested in how autistic thinking styles and behaviours may affect mental health.

Highlight 1: Autism-specific mechanisms affecting anorexia

Autism and anorexia often co-occur but very little is known about why this happens and how best to support autistic people with anorexia. Funded by Autistica,  WARC and colleagues at UCL spoke to autistic women with anorexia, as well as parents and professionals. They helped identify autism-specific mechanisms, such as sensory differences and challenges with social interactions, that may underlie anorexia in autistic women.

WARC also found that understanding of autism in eating disorder services was limited, and that simple adjustments (e.g. to the sensory environment) could bring positive benefit for autistic services users.

View our papers on autistic-specific mechanisms and service experience.

Highlight 2: Understanding patterns of nonverbal behaviour

Some of the research carried out at WARC provides fundamental insights into social cognition in autism, driven by the development of novel experimental paradigms. WARC have explored differences in looking patterns when viewing faces, including how social interaction influences these patterns.

The team found that people who are high in autistic traits look less at the face of the other person when they are actively engaged in an interaction with another person. WARC are now looking at how social synchrony, which refers to the way we time social interactions, might differ in autistic people.

View our papers on new paradigms and eye gaze during interactions.

6. Understanding communication, families and relationships

WARC investigate how autistic people communicate with each other and with non-autistic people and the impact this may have on the individual, families and relationships. Researchers have been exploring the triadic communication between autistic children, parents and therapists in a therapeutic setting, as well as considering communication during post-diagnostic support.

WARC has also been discovering how autistic people use compensatory strategies in everyday life.

Highlight 1: Understanding compensatory strategies

Some autistic people 'compensate' in social situations to disguise their autistic characteristics. WARC asked over 100 autistic adults about their behaviours and found they used strategies such as modelling neuro-typical people’s behaviour, learning when to laugh at a joke, and hiding special interests from others.

Strategies could have both a positive impact (e.g. friendships) and a negative impact (e.g. poor mental health and difficulty getting an autism diagnosis). To best support autistic people, clinicians and other professionals should be more aware of compensatory strategies.

View our qualitative paper on compensation in autism and our quantitative papers on compensation in autism.

Highlight 2: Smart speakers to improve wellbeing and communication

In collaboration with a local charity, Innovate Trust, WARC investigated outcomes of providing smart speakers to over 80 adults living in supported accommodation. All had Intellectual Disability and some also had autism. They found that around 80% of individuals enjoyed using the smart speakers and said they increased their independence.

WARC also found that individuals who used the smart speakers showed improved speech intelligibility. These findings suggest smart technologies may help improve both wellbeing and communication.

View our paper on smart speakers and wellbeing paper and communication paper.

7. Collaborations: visitors and visiting

WARC have shared the work taking place in CUCHDS during many research visits and learnt much from our global collaborators and friends. Examples of some of WARC's visits include:

• WARC founder, Professor Sue Leekam, visited Traberitea Research Group, Universidad Autonoma de Madrid in 2017.
• WARC Research Associate, Sarah Barrett was funded by the British Psychological Society to visit to the University of Latvia and the Latvian Autism Association in 2017.
• PhD student  Katy Unwin, was funded by the ESRC to visit to the Olga Tennison Autism Research Centre, Australia in 2017.

WARC have also hosted many national and international researchers, clinicians and policy makers, including:

• Delegates from Latvia and the Welsh Minister for Social Services and Public Health in 2017
• Esteemed developmental psychologists from Australia, Professor Alison Lane, Professor Cheryl Dissanayake and Professor Lesley Stirling in 2018
• Lord Dafydd Wigley and the Chair of the Latvian Autism Association, Līga Bērziņa in 2014
• European SIGNS collaborator, Dr Marcella Caputi, from the University of Turin in 2019
• Professor Emiko Kezuka from Gunma Prefectural Women's University in Japan in 2016.

8. Training the future

WARC has been privileged to train many talented PhD students who have embarked upon a wide range of careers.

The roll call of PhD graduates includes:

• Zoe Baberg-Collins (Welsh Government)
• Sarah Barrett (Office for National Statistics)
• Silvia Colonna (Welsh Government)
• Rhiannon Fyfield (Educational Psychologist)
• Anastasia Kourkoulou
• Lai-Sang Iao (Lecturer, Nottingham Trent University)
• Rachel Kent (Clinical Psychologist)
• Julie Mullis (Wales NHS)
• Sarah Thompson (Research Associate, Children’s Social Care Research and Development Centre, Cardiff University)
• Mirko Uljarević (Senior Research Fellow, University of Melbourne)
• Katy Unwin (Postdoctoral Research Fellow, Olga Tennison Autism Research Centre, Melbourne)
• Alice Winstanley (Care Quality Commission).

WARC have also supervised many research assistants and interns, as well as the research projects of master’s students (Alexandra Gough, Lottie Hopkins, Katy Warren) and trainee Clinical Psychologists (Gareth Davies, Marcus Lewton).

WARC have additionally provided early career training for post-doctoral associates, including: Dr Sarah Carrington (Lecturer, Aston University), Dr Jane Lidstone (Durham University), Dr Georgina Powell (Cardiff University), Dr Louise White (Office for National Statistics).

9. Establishing the WARC multi-sensory environment

In 2018, WARC opened a multi-sensory environment (MSE), or sensory room, in the newly formed Cardiff University Centre for Human Developmental Science (CUCHDS). The MSE was brought to CUCHDS thanks to a sponsorship agreement between Mike Ayres Design and Cardiff University.

Research at WARC is informing the development of much needed evidence-based guidelines for practitioners who use sensory rooms with autistic children and adults. Related to this, they have been advising the Child Mental Health Research Centre in Nanjing Brain Hospital, China as they set up an MSE for therapeutic purposes.

10. Community engagement

WARC value their engagement with the autistic and parent community and have been lucky enough to have had many opportunities to hold community events.

Examples include:

• The National Autistic Society Cardiff and the Vale Branch and WARC joint events. Cardiff University, 2012 and 2014.
• ESRC Festival of Social Science event 'Stepping inside the minds of children', 2018.
• Funded by the Arts Council of Wales, WARC supported playwright Tim Rhys in developing Quiet Hands, a play about an autistic adult and starring autistic actor Joshua Manfield, 2017.
• Cardiff University's Discovery Project Open Day 2015, helping young autistic people make the transition from school to university.
• AP Cymru and Cardiff University 'Autism Exhibition', 2019

A thank you to WARC’s supporters

The Wales Autism Research Centre began was initiated through a unique collaboration between Autism Cymru and Autistica, the School of Psychology, Cardiff University and the Welsh Government. It was supported by generous donations from the above, along with Autism Initiatives, Baily Thomas Charitable Fund, the Waterloo Foundation, Jane Hodge Foundation, Research Autism and the Freemasons Grand Charity.

Ten years on, WARC would like to extend say a sincere 'thank you' to these supporters, particularly Hugh Morgan (Autism Cymru), Hilary Gilfoy (Autistica) and Dylan Jones (Cardiff University). The team also thank the many organisations who have funded their research projects, as well as the talented researchers who have contributed to WARC's success. The final thank you is reserved for the many autistic people and their families who have supported and inspired WARC’s work.