People with autism should be offered personalised, stepped care throughout their lives, an international report sets out today.
The authors of the Lancet Commission on the future of care and clinical research on autism are calling for global co-ordination between governments, health care providers, education, financial institutions, and social sectors to reform research, care, and treatment for autism.
Writing in The Lancet, they say this would include individualised treatments, agreed with active participation from both those with autism and their families.
The report points out the urgent actions that are needed in the next five years to address the needs of people with autism and their families.
It sets out a new standard of care that services and social care systems worldwide should adopt. The Commission also calls for global research efforts to expand beyond basic science toward developing evidence-based practical interventions.
The report says given the heterogeneous nature of autism, a new personalised, stepped care approach is urgently needed, which moves towards a focus on support to improve the quality of life for individuals and their families.
These would focus on individuals’ unique concerns, needs, characteristics, and circumstances and would be adjusted throughout their lives.
Commission co-chair Dr Catherine Lord, of the University of California, Los Angeles, USA, 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.
“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 proposes the designation of “profound autism” for people with autism who are minimally verbal or non-verbal, are not able to advocate for themselves, and require 24-hour access to a carer.
The World Health Organization has recognised autism as a global health priority, with key recommendations for all member states to implement, but many remain undiagnosed, especially in areas with low resources.
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 where autism and other neurodevelopmental conditions may be stigmatised, or overlooked, leaving children undiagnosed until adulthood or in many cases never diagnosed.
“In these settings, where most of the world’s children live, individuals should not have to wait for months or years to start treatment because they are unable to find an appropriate assessment, and once identified as having specific needs, their geography, socio-economic and social status and access to services should not be a barrier for receiving care.”
Lord C, Charman T, Havdahl A et al. The Lancet Commission on the future of care and clinical research in autism. The Lancet 7 December 2021
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