Designing a Longitudinal Study of Development of Students With Autism: Focus on Learning, Education, and Meaningful Outcomes
Roberts, JM., Paynter, J., Trembath, D., Westerveld, M., & Williams, K
Autism is a heterogeneous neurodevelopmental condition. Children and young people with autism are increasingly being educated in mainstream schools, but long-term outcomes remain poor in terms of educational attainment, participation in the community, mental health, and quality of life. We need to know more about the developmental trajectories of this population to better target support and intervention, particularly in relation to education. The Longitudinal Study of Students with Autism is a cross-sectional longitudinal study using online surveys to collect data annually from parents, teachers, and students with autism, over 6 years. Online surveys combine standardized assessments and qualitative questions focusing on participation and engagement in school, mental health, educational and quality-of-life outcomes and focus on function and strengths and well as deficits/needs. Longitudinal studies have many advantages, in particular the collection of information over time enabling us to investigate predictors of various outcomes. In the Longitudinal Study of Students with Autism, the focus is on participation and engagement at school and the characteristics of autism and co-occurring conditions that are related to educational and quality-of-life outcomes for children with autism. There are challenges associated with longitudinal studies including participant recruitment, verification, and retention. These are discussed and the importance of a multidisciplinary team of health and education professionals, across research and industry, is highlighted as is the importance of building positive relationships with participants over time. The advantages and disadvantages of online surveys are also discussed.