Media advisory: Autism expert, Lancet Commission author available for comment on international report calling for personalized, stepped-care approach

LAWRENCE — A major report will be made public today by the Lancet Commission on the future of care and clinical research on autism.

One of its key authors, Brian Boyd, associate professor of applied behavioral science at the University of Kansas and director of the Juniper Gardens Children’s Project at KU’s Life Span Institute, is available to answer questions from media about the Lancet Commission’s findings.

Boyd’s research primarily focuses on development and evaluation of evidence-based interventions to promote positive outcomes for autistic children. Much of Boyd’s work aims to support autistic children in their homes and schools to ensure they can thrive in their environments.

Boyd also will present key findings and recommendations in a webinar at 11 a.m. EST Tuesday, Dec. 7, along with commission chairs Catherine Lord and Tony Charman. Attendance is free.

According to the Lancet Commission, “At least 78 million people are living with autism worldwide, the majority of whom do not receive adequate support or care services, especially those living in low- and middle-income countries or other low-resource settings. Given the heterogeneous nature of autism, a new personalized, stepped-care approach is urgently needed.”

Reporters may use comments from the Q&A with Boyd below or contact the KU researcher by email.

Q: What do you think are the most important findings of the commission’s report on autism? What should the takeaway message be for people?

Boyd: One of the takeaway messages is there’s always hope if we provide the right environmental supports that some autistic people may need to thrive and live fulfilling lives. Some of the other important points include recognizing that autism and developmental disability is global. More than 95% of children under the age of 5 with developmental disabilities live in low- and middle-income countries. In fact, there are more than 78 million autistic people worldwide. We also need to re-envision our services and intervention delivery models to be more responsive to the individual preferences and needs of families and autistic individuals, including considering the costs of interventions to families, both economic and timewise, and their burden. We also must do more to improve outcomes for families and autistic individuals from underserved and under-resourced communities in both high-income countries and low- and middle-income countries.

Q: Can you describe your work and experience on the Lancet Commission? What area of the commission’s research were you most involved in?

Boyd: The Lancet Commission was comprised of autism researchers, clinicians, parents of autistic children and autistic self-advocates. We all came together for a common purpose, which was to make recommendations about the future of care for autistic people across the globe. We wanted to make recommendations that could have an immediate impact on improving the lives and outcomes of autistic children, youth and adults. We had three productive meetings in Montreal, Los Angeles and London, and even though those are wonderful locations, we had a singular goal and focus in mind – make actionable recommendations that could be reasonably implemented and improve outcomes over the next five years. I primarily worked on the sections of the commission on interventions for autistic individuals and how we appropriately measure progress or outcomes when we do provide interventions to those who would benefit from them.

Q: The commission is introducing the idea of "profound autism." How do you feel that new concept might change treatment and services for people with profound autism?

Boyd: It’s important to point out that this term is not meant to introduce or represent a new diagnostic category or label. It is also not meant to suggest that autistic people without a co-occurring intellectual disability cannot also have extensive support needs. This term is really meant to support clinical decision-making and to serve as a reminder that there is a group of autistic individuals with different needs that may require more specialized services and supports, and that we must not lose sight of this group in our research and our clinical practice and decision-making.

Q: What are KU’s strengths in autism research as you see them? How is Juniper Gardens working with the public in Kansas City to address autism or help people with autism?

Boyd: KU has a long history of autism research, and the Kansas Center for Autism Research (KCART), led by Matthew Mosconi, has been heavily engaged in this work. The wonderful thing about autism research at KU is its breadth – we’re involved in many aspects of autism research from brain-imaging studies to very applied research that’s happening in communities directly with families and children. Juniper Gardens has a long history of conducting research in public schools serving autistic children to improve their educational outcomes and ensure they can be successful in a school environment. School-based research, including training providers to deliver high-quality instruction, is a unique aspect of the work we do at Juniper Gardens.

See more about the Commission online.