Autism spectrum disorder affects 78 million people and families worldwide. A new model of care and treatment prioritises personalised, stepped care approaches is urgently needed, according to a new report published in The Lancet.
Autism spectrum disorder is a heterogeneous condition that manifests differently across a person’s life and diagnosed individuals require personalised, stepped care that meets their needs throughout their lives.
Investment is required to develop and refine practical interventions to improve the lives of diagnosed individuals and their families.
Global research into autism spectrum disorder
The authors of the Lancet Commission on the future of care and clinical research on autism spectrum disorder call for global coordination between governments, health care providers, education, financial institutions, and social sectors. A reform of research, care and treatment for the disorder is essential to include individualised treatment plans throughout a person’s life with active participation from patients and their families.
The commission was formed in 2018 by international experts, including clinicians, healthcare providers, researchers, advocates, self-advocates, and parents with children with an autism spectrum disorder. The group calls for global research efforts to expand beyond basic science toward developing evidence-based practical interventions tailored to the heterogeneous needs of people living with autism and could be applied to other neurodevelopmental conditions.
A new personalised approach to care
The new approach suggested would move away from categorical diagnosis and focus on support to improve the quality of life for individuals and their families. The proposal should consider all unique concerns, needs, characteristics, and circumstances, adjusted throughout their lives.
“Although numerous well-tried interventions and treatments for autism exist, not enough is known about which treatments or services should be offered, when, to whom, for how long, with what expected outcomes and for what cost,” said Commission co-chair Dr Catherine Lord of the University of California, Los Angeles (USA). “Autism is an incredibly heterogeneous condition and treatment approaches must vary not only between people living with autism but throughout a person’s lifetime. This stepped care approach requires coordination on a global scale between governments, social sectors, healthcare providers, education and finance institutions, and among people living with autism and their families.”
The commission recognises the value of neurodiversity amongst people with autism spectrum disorder to create stronger, wiser communities and positive social values. Additionally, they proposed that the designation of ‘profound autism’ be adopted for people with the disorder who are minimally verbal or non-verbal due to the inability to advocate for their own needs and require 24-hour access to an adult for care. The proposal should be used for administrative purposes (rather than a formal diagnosis) to encourage both the clinical and research global communities to prioritise the needs of this vulnerable and underserved population. The authors validated the designation of profound autism against three databases and found that it would apply to anywhere between 18% to 48% of people with autism.
Prioritising meaningful research
The commission suggests that national and international infrastructures are developed to help prioritise research that goes beyond biology and studies of single interventions to focus instead on integrated care across systems and accounts for individual differences within the autism spectrum.
Recent trials amongst young children with autism spectrum disorder identified psychosocial interventions that resulted in changes that could mitigate the influence of autism on the development of some people. Research to identify what factors enable people with an autism spectrum disorder to live fulfilling lives, the key elements of effective interventions for children and adults, and wider environmental barriers to change for people with autism.
“Basic science is often prioritised over more practical knowledge, leaving people living with autism, families, and providers without evidence-based guidance. Individuals with autism are a valued part of society. We urge commitment to greater investments in what can be done for people living with autism and their families now, with a focus on how to build on existing information to answer specific practical questions that will then better inform interventions and services to help people living with autism achieve their fullest potential,” said Commission co-chair Prof Tony Charman of King’s College London (UK).
