By Ethan Lam and Prof Nicola Yuill
The Autism Community Research Network Sussex was launched last year as a collaboration between Psychology and Education researchers at the University of Sussex and local autism stakeholders involved in education, health and social care services. ACoRNS is a sister organisation to AcoRN Southampton and seeks to develop, research, understand and share good practice in services used by autistic children and their families. The launch event focused on re-imagining education: 1 in 100 children in UK schools is autistic and the Covid-19 pandemic threw into sharp relief the pressures that autistic pupils can experience.
We held our second event on 24th March, focusing on Re-imagining Healthcare in Autism. The Westminster Commission on Autism identified many ways that autistic people experience greater health risks and reduced life expectancy compared to the general population. How can healthcare be made more accessible? Seven speakers presented their experiences and new initiatives.
Dr Stephanie Daley from the Brighton & Sussex Medical School (BSMS) shared their progress of setting up a ground-breaking new programme, Time for Autism, based on the award-winning Time for Dementia initiative. Families were concerned about doctors’ lack of awareness and understanding about autism, meaning that it is a challenge to provide care and treatment in ways that consider the specific needs of autistic patients. Parents felt that communication between healthcare professionals was not efficient and that they, as the experts of their child, wanted to be listened to more. Time for Autism starts in September 2021 as a mandatory part of medical student training at BSMS. Each student will visit a family with an autistic child over the course of a year. The goal is for medical students to develop a relationship with the families and understand more about their lived experiences, creating a new generation of doctors who can adapt to better suit the needs of families and their autistic child. The project is encouraging families to sign up to take part.
Dr Samantha Holt, a researcher in autism from the Children and Technology Lab (University of Sussex) shared her experiences as a parent of an autistic daughter. She described how challenging a visit to the GP can be. Being in an unfamiliar and busy environment creates anxiety and having to sit and wait exacerbates the level of stress her daughter experiences. Sam shared some of the strategies she has developed over the year, including bringing a DVD player with her daughter’s favourite movies playing and asking for a separate place to wait. She recalled a time that her daughter was seriously ill and the difficulty of getting into an ambulance, as the system could not cope with them arriving in their own familiar car.
Following the tragic death of Oliver McGowan, his mother Paula McGowan started a petition to campaign for mandatory training for autism and learning disabilities in health practitioners and she shared the recent progress of the scheme with us. The Oliver McGowan Mandatory Training in Learning Disability and Autism Awareness, co-designed by autistic people, is based on the Capabilities Framework for Supporting People with a Learning Disability and Autistic People. It aims to educate all health and social care staff on what these issues are and how they affect people living with it, how to apply reasonable adjustments consistently across contexts, and for staff to reflect on their own behaviours, biases and prejudices. Another goal Paula hopes to achieve is for health practitioners to develop skills to communicate well with the patients themselves and to work with them collaboratively on their treatment. The ultimate objective is for healthcare for learning disabled and autistic people to reach outcomes at the same level as in the general population.
Dr Jennifer Parry, consultant in paediatric dentistry from the Sussex Community Foundation NHS Trust, talked about overcoming the difficulties of attending dental care experienced by autistic people. Dental surgeries can be very challenging for autistic people with sensory sensitivities: the bright lights, the closeness of the dentist and the probing instruments in the mouth, as well as the smells, can all trigger real distress. The trust has increased training for staff in ASD following feedback of experiences during the pandemic. The training consists of 2 videos, the first from an autistic person’s point of view showing some possible triggers for anxiety they may encounter in a dental surgery. They then ask staff to reflect and think of possible solutions to ease these anxieties. The second video shows how they might adapt their practice and the way they talk to their patients, such as explaining what is going to happen and why, and giving time for patients to process the information they have been given.
Dr Ian Male and Will Farr of the autism diagnostic clinic at Sussex Community Foundation NHS Trust shared their current project on improving the diagnostic pathways for Autism. The pandemic has accelerated the move from in-person practices to more digital ones like online GP calls and video observation. The project came about because of the concerns about the long waiting times and growing waiting lists for autism diagnosis. Many families saw the use of video observation as positive, but it also places challenges to standardised testing, as variations in the environment affect the reliability and validity of diagnostic testing. They also spoke about integrating different professionals across fields to improve competencies and skills.
Finally, Professor Nicola Yuill from the Children & Technology Lab shared the early work on the new Our Stories project, in collaboration with the University of Southampton ACoRNS group. Our Stories builds on the Autism Transitions project which co-creates video stories showing the perspectives of autistic children. The Sussex part of Our Stories is working with Time for Autism and with Just Right, an initiative in Brighton & Hove schools that aims to support autistic children manage their emotions in the classroom environment to help them be in the best frame of mind for learning. The project is working with a technology company, PALS Society, to produce video stories with children and young people, and virtual tours of settings so that people can ‘walk round’ virtually before they even enter a building.
The breakout groups produced lively discussions about how health services could adapt, and how quickly these new initiatives might help close the health gaps.
Ethan Lam is a Psychology undergrad student doing a placement year with the Children and Technology Lab (ChatLab). Nicola Yuill is a professor of Developmental Psychology in the School of Psychology at Sussex. She is part of the Developmental and Clinical Psychology research group, the director of the Children and Technology Lab and one of the founders of ACoRNS.