Mark Taylor

Autism is a common lifelong condition. Autistic individuals are at a high risk of somatic disorders, such as epilepsy, and are at an increased risk for premature mortality. A better understanding of co-occurring somatic disorders in autistic individuals is thus critical from the perspective of improving public health in marginalized groups, yet existing research is limited by a descriptive focus. Our overall aim is to identify risk factors for somatic disorders in autistic individuals. We will optimize Swedish registry data, including linkage with a large genotyped sample, using powerful longitudinal study designs. First, we will test whether genetic factors account for the association between autism and somatic disorders. We will triangulate three family-based designs, and utilize contemporary molecular genetic approaches to assess genetic links between autism and somatic disorders. Second, we will assess whether the psychosocial adversity faced by autistic individuals impact on their health using longitudinal cohort designs. Finally, real-world data will allow us to circumvent the challenges of conducting randomized controlled trials to examine the impact of psychotropic medication use on somatic health in autistic individuals. This project will guide the field of somatic health in autistic individuals from descriptive epidemiology towards a mechanistic understanding, which will ultimately lead to improved prevention, detection, and treatment of these disorders.

Research problem and specific questionsPSYH-STREAM aims to collect big data on functioning and psychiatric problems among children and youth with autism and ADHD as well as neurotypically developing youngsters aged 11 to 25 years to gain novel and reliable knowledge about:how individual strengths and weaknesses are related to mental problems.how social participation affects mental problems.the links between environmental facilitators and barriers and mental problems.Data and methodWHO’s international classification of functioning (ICF) is a system for mapping individual abilities and participation and how they unfold in a specific environment. ICF use is recommended by many international authorities incl. the National Swedish Board of Health and Welfare as a tool for describing functional status, assessing needs and for intervention planning. ICF is also recommended to support social and educational policy making. The competence center KIND at Karolinska Institutet has tailored and evaluated ICF for use in autism and ADHD. PSYH-STREAM will collect with surveys a large data set on mental problems (anxiety, depression, self-harm, somatic complaints, drug abuse, stress and burnout) and functioning (strengths and weaknesses, participation, hindering and facilitating factors in the environment) among 10,000 children and youth with and without autism or ADHD. Structural equation modeling and other statistical methods will be used to answer the research questions.Research problem and specific questionsPSYH-STREAM is a 4-year project, well internationally networked, led by KIND in collaboration other researchers, interest organsations, clinical units and authorities. Data is collected via the platform icfcoresets.se and a comprehensive recruitment strategy.RelevanceSociety today has limited awareness and knowledge of the multiple functional risk and protective factors of mental problems. Society also has little understanding of autism and ADHD, where the risk of mental health problems is particularly high. PSYH-STREAM will (i) lay a foundation for better understanding of the links between functioning and mental health among children and youth in general, and autism and ADHD, in particular, (ii) promote functioning-based care and support throughout society for young people with autism and ADHD, and (iii) create knowledge about how mental problems among young people can be prevented.