Autism research in and outside the laboratory
Professor Bhismadev Chakrabarti
University of Reading
Autism comprises a diverse spectrum of lifelong conditions that pose significant challenges for all those with a diagnosis, as well as those around them. Addressing these challenges requires a multi-pronged approach based both within and outside the research laboratory. In my talk, I will focus on some of our efforts in this direction over the last decade. In our laboratory, we study the neuroscience of social cognition in individuals with and without Autism Spectrum Conditions (ASC), using a range of techniques that includes functional MRI, eye-tracking, psychophysiology, and psychophysics. This research, like the majority of autism research worldwide, takes place within Europe and the USA. To move beyond these artificial boundaries in a parallel research strand outside the laboratory, we study the distribution of autistic traits in Indian schoolchildren. This set of studies not only allows us to build an autism research toolkit in India, but also provides critical insights into the impact of socio-linguistic factors on the manifestation of autism. The final strand of our ongoing research connects the research within and outside the laboratory through the development of a mobile app to help with digital phenotyping of autism-related features in the general population.
Evidence-based practice that enhances good quality of life for autistic people
Hannah Hayward and Bethany Oakley
Kings College, London
Background: Quality of life is defined as an individual’s satisfaction with aspects of their everyday lives, such as access to education and employment, and social relationships. Accumulating evidence suggests that quality of life is significantly reduced for many autistic individuals. In light of this, improving services and support to improve quality of life in autism is a major research and policy priority.
Method: Across three ongoing studies, we are applying quantitative and qualitative methods to investigate the lived experiences of autistic individuals. In study one, we assess the impact of mental health on quality of life in 573 6-30-year-olds (344 with a diagnosis of autism). In study two, we engage in semi-structured interviews with autistic adolescents and adults to understand the impact of mental health on quality of life in greater depth. In study three, we consider psycho-education as a tool for understanding and increasing awareness of autistic traits, including in the criminal justice system.
Results & Conclusions: Our preliminary findings suggest that mental health (i.e. anxiety/depression) has a significant negative impact on quality of life for autistic individuals. We identify physical health and improved support in school and the criminal justice system as key research and policy priorities.
Social Support for Older Adults with Additional Impairments
Professor Nicola Martin
London Southbank University
Little interest in the lives of older autistic people is evident from the literature. We are delighted that The John and Lorna Wing Foundation have funded The Critical Autism and Disability Studies (CADS) research group at LSBU to research the experiences of older autistic people who have additional impairments. By older people we mean 45 and over. We are currently appointing 4 researchers, 2 of whom will be autistic, and a project manager. We will be appointing a Steering Group before the Summer. The project will last for 2 years. Following ethical approval, we will be looking for families to participate. This will involve two levels of engagement: completing questionnaires and being interviewed at home. We are interested in the sort of social assistance autistic people who still have family support might need. The research will take place in London and in a rural location. We will be asking about supports currently being received and the sort of things that might be useful but are not currently available. Families will be asked to suggest ideas about what might be helpful, and we plan to try out and evaluate some of these suggestions. A resource pack will be developed alongside a report which is informed by legislation, policy and practice. Our aim is to make a real and useful difference to peoples’ lives by identifying available support, identifying gaps in support and trying to find sustainable ways of addressing these gaps. The charity sector will be a vital component of the picture. The project contact is Joanna Krupa. Please sign up if you want to know more. firstname.lastname@example.org
Autism and Epilepsy: understanding and voicing your experiences
Dr Susy Ridout
Participatory Autism Research Collective
Both autism and epilepsy bring a range of experiences that are unique to individuals. However, when these two neurological differences occur together in a person, they can face increased barriers and challenges due to a range of factors.
This presentation will look at some key similarities and differences in autism and epilepsy, highlighting areas where experiences over-lap and distress can become more exaggerated. Building a meaningful relationship with those that support you (families, friends, schools and practitioners) is critical to your wellbeing, and this is best achieved through your ability to understand and voice your experiences as an autistic individual with epilepsy. The same is true if you are doing this as an advocate or family member/carer.
Taking a practical approach, the presentation will talk the audience through the importance of self-awareness and will explore tools to assist autistic individuals with epilepsy, their families/carers in recognising, managing and voicing triggers and experiences of anxiety and distress. These tools will encourage autistic people with epilepsy (or their families) to identify what works for them in order to gain better control of their life.