Our researcher Dr Vicky Slonims has co-authored a landmark report setting out future of autism care and treatment, with a focus on personalised and lifelong approaches.
The Lancet Commission on the future of global care and clinical research on autism has called for actions to be taken over the next five years for a comprehensive model of autism care and treatment, research into the condition, and steps to overcome global inequities in care.
Autism affects 78 million people and families worldwide, most of whom do not have access to support outside their own resources. It is a condition that manifests differently across a person’s life and between people diagnosed with autism.
The Commission was formed in 2018 by international experts, including clinicians, healthcare providers, researchers, advocates, self-advocates, and parents of children with autism.
The report sets out a new standard of care for health and social care that moves away from a categorical diagnosis toward a focus on support to improve the quality of life for individuals and their families. centered around a person’s unique concerns, needs, characteristics, and circumstances and adjusted throughout their lives.
Commission co-chair, Dr Catherine Lord of the University of California, said: “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. (A) 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 also reiterates the value of neurodiversity among people with autism, to create stronger, wiser communities and positive social values.
At the same time, the Commission proposes that the designation of ‘profound autism’ be adopted for people with autism who are minimally verbal or non-verbal, are not able to advocate for themselves, and require 24-hour access to an adult who can care for them. The authors propose that the designation be used for administrative purposes (rather than a formal diagnosis), to encourage the clinical and research global communities to prioritise the needs of this underserved group.
The authors validated the designation of profound autism against three databases, and found that it would apply to between 18% and 48% of people with autism.
The Commission also calls for research efforts to expand toward developing evidence-based practical interventions tailored to the needs of people living with autism. These efforts could be applied to other neurodevelopmental conditions.
Commission co-chair, Dr Tony Charman from King’s College London, said: “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.”
The Commission called for moves to overcome global inequities in assessment, care, and treatment.
Co-author Dr Gauri Divan of Sangath, India, said: “It is imperative that we tackle the scarcity of resources that exist for autism care and treatment worldwide, especially for individuals and their families living in resource-limited settings.”
Dr Slonims added: “Working in the UK context it may not be apparent that the majority of autistic children and adults do not receive the support necessary to help them develop their full potential. This commission has taken a global perspective to highlight this inequity and set out ways to improve the quality of life of all autistic people.”
Writing an introductory Comment for the Commission, Dr Richard Horton, Editor-in-chief of The Lancet and Helen Frankish, Executive Editor of The Lancet say “The Commission’s recommendations emphasise improving the quality of life for all autistic people and their families through seeking better information about the needs, strengths, and most effective services for autistic individuals across the lifespan and developmental stages.
“Ultimately, the message of the Commission is one of hope. Studies have shown that much can be done to improve the life outcomes for autistic individuals. But concerted action is needed without delay to answer fundamental questions about the care for autistic people, together with the development of policies and programmes to improve the lives of all autistic individuals across the globe.”
Dr Slonims is a senior consultant speech and language therapist and clinical academic in The Newcomen Neurodevelopmental Team, part of the paediatric neurosciences service in the Evelina London Children’s Hospital. The team is a national centre of excellence, with an international reputation for leading and implementing research into clinical practice.