A new, comprehensive model of autism care and treatment that prioritises personalised, stepped care approaches is urgently needed – according to a new international report published in The Lancet, co-authored by Professor Martin Knapp at LSE.
The authors of the Lancet Commission on the future of care and clinical research on autism call for global coordination between governments, health and social care providers, education, financial institutions, and community sectors to reform research, care, and treatment for autism. This should include individualised treatments and support throughout a person’s life, with active participation from autistic individuals and their families.
The Commission was formed in 2018 by international experts, including clinicians, healthcare providers, researchers, advocates, self-advocates, and parents of autistic children. The report identifies urgent actions required in the next five years to address the current needs of autistic people and families worldwide, and to build a foundation for improved care and treatment in the future. In the report, the Commission also reiterates the value of neurodiversity – or the natural variability within human brains and minds – 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 autistic people 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.
On the policy implications of this report, co-author and Professor of Health and Social Care Policy at LSE Martin Knapp, said: “Autistic people face marginalisation and experience challenges in many areas of their lives, due to a myriad of external factors. This Lancet Commission focused mainly on health and care, but made links across to education, employment, community life and other areas. Policy responses need to be similarly wide-ranging and holistic.”
National and international infrastructures should be developed to help prioritise research that goes beyond biology and studies of single interventions to focus instead on those that integrate care across systems over time and consider individual differences within the autism spectrum that lead to better outcomes. Further research is now needed to identify what factors enable autistic people to live positive, fulfilling lives, the key elements of effective interventions for children and adults, and the wider environmental barriers to change.
Many autistic individuals remain undiagnosed, especially in low-resource settings, where surveillance is rarely done for any neurodevelopmental disorder. Families often have limited access to evaluations and other resources to assess and respond to autism or other neurodevelopmental conditions. In addition, many families may not seek out assessment or treatment due to limited awareness about autism, social and cultural stigma related to neurodevelopmental conditions, and financial barriers.
“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 … 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.” says co-author Dr Gauri Divan of Sangath, India.
The authors write that much more can be done now for people living with autism that will lay the foundation for improved, comprehensive care in the future to ensure more equitable care and social justice for autistic people. The Commission’s recommendations for both clinical practice and systems change are based on beginning with an individual’s needs and with continual involvement of stakeholders, including autistic people, families, supportive community members, and providers, at each step of the way.
Capacity building is essential to strengthening care systems, particularly in low-resource settings and underserved communities. These multi-dimensional approaches will yield personalised, dynamic models of intervention and services that will be the key to a better future for individuals with autism and other neurodevelopmental conditions.