International, multi-disciplinary commission report on the Future of Healthcare and Clinical Research in Autism sees hope, calls for science to work within diverse communities, and proposes a modified stepped care and personalized health model
For the last several years Dr. Catherine Lord, chair, and Dr. Tony Charman, co-chair, led an international, multi-disciplinary commission, from nine countries and 15 disciplines including autistic stakeholders and family members, to write a report on the Future of Healthcare and Clinical Research in Autism for Lancet. Dr. Connie Kasari, faculty in CART, was also a member and a number of CART postdoctoral fellows including Dr. Alison Holbrook, Dr. Jamie McCauley, and Dr. Chrissie Toolan were authors. This effort was funded in part by UCLA CART, UCLA Child and Adolescent Psychiatry, Autism Speaks, Next for Autism and donations from private foundations. The Committee met three times, once in Montreal associated with the INSAR meeting, once at UCLA associated with a Seminar on International Perspectives on Autism and once in London. Early in the process, the committee decided that their focus would be on reviewing research and making recommendations that, if put into place, could improve the lives of autistic people and their families in the next five years. Such an approach was not intended to replace the significant, longer term investment in basic neuroscience and genetics that has resulted in important findings in the last few years, but rather to offer a parallel perspective, which has generally received less attention and which requires even more systematic support from government and social agencies.
The Commission report balances the optimism that comes from the extraordinary amount of research, advocacy and interest in autism in the last 50 years; with realism that there are many, marked gaps in knowledge and services that limit the quality of life for many autistic people and their families across the lifespan, in part due to the heterogeneity and complexity of the condition. Autism is a global issue, which means that we need ways to address the healthcare and mental health care needs of autistic people and their families that are culturally appropriate and usable in widely different service contexts. However, this does not mean that expectations and scientific standards should be lower when there are fewer resources, but that our science needs to work within diverse communities, including with autistic stakeholders and families, to provide better information about basic questions of which interventions, with what level of intensity and duration, and when in development, provide real change in outcomes for autistic children, youth or adults within their cultural contexts. The Commission proposes a modified stepped care and personalized health model in which the steps not only reflect the financial cost of services but also the preferences, cost and burden to autistic people and family members in terms of time, expense, effort, and value. We highlight the needs of people with autism who cannot speak for themselves by introducing the concept of profound autism and call for respect for neurodiversity and the contributions autistic people and their families make to science and society. We call for governments and funding organizations to prioritize systematic research that goes beyond biology and small-scale studies of single short-term interventions, to address the issues of for whom, when, how much, how long and when interventions can change outcomes in ways that acknowledge the heterogeneity of families, cultural contexts and autistic individuals and the need to integrate care across systems and time. Our message is one of hope; research has shown us that there is great potential for change; studies deliberately planned to address critical questions and well-considered policies for autistic people and their families across the globe can make these changes happen in our lifetimes.
The Commission report will be released in early December, followed by a virtual launch, hosted by Lancet later that month.