Peer-reviewed / Review
- Autism affects 78 million people and families worldwide, most of whom do not have access to support outside their own resources
- Autism is a heterogeneous condition that manifests differently across a person’s life and between people diagnosed with autism; effective assessment and care requires personalised, stepped care approaches that meet individual needs throughout their lives.
- Greater investment is urgently needed to develop and refine practical interventions that can improve the lives of people with autism and their families today and build the framework for better approaches to care in the future
- Commission introduces the concept of “profound autism” to distinguish individuals who have high dependency needs and how a stepped model of care will best meet the unique needs of all people living with autism
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.
The authors of the Lancet Commission on the future of care and clinical research on autism call for global coordination between governments, health care providers, education, financial institutions, and social sectors to reform research, care, and treatment for autism that will include individualised treatments 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 of children with autism. The report identifies urgent actions required in the next five years to address the current needs of people with autism and families worldwide and to build a foundation for improved care and treatment in the future. The report sets out a new standard of care that all services and social care systems worldwide should adopt to best support the needs of people with autism and their families.
The Commission also 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.
Personalised, stepped model approach to care
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 personalised, stepped care approach is urgently needed. This new approach moves away from a categorical diagnosis toward a focus on support to improve the quality of life for individuals and their families centered around their unique concerns, needs, characteristics, and circumstances that can be 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,” says 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 also reiterates the value of neurodiversity among people with autism – 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 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) in order 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 (panel 2).
Prioritising meaningful research and clinical practice
National and international infrastructures should be developed to help prioritize research that goes beyond biology and studies of single interventions to focus instead on those that integrate care across systems over time and take into account individual differences within the autism spectrum that lead to better outcomes.
Recent high-quality trials among young children with autism have identified psychosocial interventions that can result in changes that could mitigate the influence of autism on development for some people. Research is now needed to identify what factors enable people with autism to live positive, fulfilling lives, the key elements of effective interventions for children and adults, and the 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,” says Commission co-chair Prof Tony Charman of King’s College London (UK).
Overcoming global inequities in assessment, care, and treatment
The needs of families who live with autism worldwide are universal. The World Health Organisation (WHO) has recognised autism as a global health priority, with key recommendations for all member states to implement. But many individuals with autism 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 treat 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, 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. Women, minority ethnic populations, people living with profound autism, and people with other co-occurring conditions such as anxiety, depression, behaviour challenges, or sleep disorders are also often further marginalised from services. We must do more for these populations and hold our governments and health systems accountable for providing life-changing support that will ultimately better our entire society,” says co-author Dr Gauri Divan of Sangath, India.
Improved care today and for the future
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 people living with autism. 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 people with autism, 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.
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.”
NOTES TO EDITORS
A full list of authors and declaration of interests statements are available in the report.
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 The three samples included 8-year-olds in the Norwegian Mother, Father and Child Cohort (MoBa) study; 12-year-olds to 23-year-olds in the British Special Needs and Autism Project (SNAP); and the Early Diagnosis Study, or EDX, a US-based longitudinal study – all included different methods of sampling and recruitment.
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The Lancet Commission on the future of care and clinical research in autism
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CL reports royalties from Western Psychological Services for diagnostic instruments; is on scientific advisory boards or projects for Tilray, Roche, Gateway, Springtide, and Greenwich Biosciences; and is supported by grants from the US National Institute of Mental Health (R01HD081199, R01MH115363, R01MH104423–02, and R01MH114925). TCh reports consultancy fees from Roche and Servier; royalties from Sage Publications and Guilford Publications; grants from the UK Medical Research Council (grants number MR/K021389/1 and MR/R011427/1), the UK National Institute for Health Research (grants number 13/119/18 and RP-PG-1211–20016), the EU Horizon 2020 programme (grant number 814302), Innovative Medicines Initiative (grant agreement number 777394 and AIMS-2-TRIALS, which receives support from the EU Horizon 2020 programme, European Federation of Pharmaceutical Industries and Associations, Autism Speaks, Autistica, and Simons Foundation Autism Research Initiative); and grant support from MQ Mental Health Research, The Waterloo Foundation, Epilepsy Research UK, the Charles Hawkins Fund, and the Baily Thomas Foundation. EA reports consulting fees from Roche and Quadrant; funding from Roche and SynapDx; non-financial support from AMO Pharma; book royalties from APPI and Springer; editorial board honoraria from Wiley; a patent (US20160000365A1) for an anxiety meter; is supported by the Ontario Brain Institute (POND network), Canadian Institutes of Health Research, Autism Intervention Research Network on Physical Health (funded by the Health Resources and Services Administration), US National Institutes of Health, Brain Canada, and the Azrieli Foundation; and is the Canada Research Chair in translational therapeutics in autism spectrum disorder and Dr Stuart D Sims endowed chair in Autism. BB is supported by US National Institute of Mental Health grant (1R01HD82127). AHa was supported by grants from the South-Eastern Norway Regional Health Authority (grant numbers 2018059 and 2020022) and by the Research Council of Norway (grants number 274611 and 288083). RJ reports funding from Australia’s National Health and Medical Research Council. JC is supported by National Institute of Mental Health grants NIMH09902, NIMH081148, NIMH083707, NIMH80011, and U10MH66764. PC is supported by Simons Foundation Powering Autism Research and the Maternal and Child Health Bureau of the Leadership Education in Neurodevelopmental Disability. TCa reports personal fees from Western Psychological Services. LS reports being a consultant for Roche, Yamo, Teva, Impel, and Janssen Pharmaceuticals; book royalties from Oxford University Press, Guilford Press, and American Psychological Association Press; and licensing royalties for the Parent-Rated Anxiety Scale for Autism Spectrum Disorder from Cogstate and Yamo. PPW reports being employed by Clinical Research Associates, a non-profit organisation that is developing an experimental drug treatment for autism. CMF receives royalties for books on autism spectrum disorder, attention-deficit hyperactivity disorder, and major depressive disorder; grants for the A-FIPP randomised controlled trial (FR2069/8–1, 8-2), awarded by the German Research Foundation, and for the EU-AIMS2-TRIALS (H2020 777394) and EU STIPED (H2020 731827), awarded by the EU. CK is supported by grants from the Health Resources and Services Administration of the US Department of Health and Human Services (UA3MC11055), the US National Institutes of Health (R01HD098248, R01HD095973, P50DC018006), the US Department of Defense, and the Goldman Foundation (3104). APi receives questionnaire royalties from WPS. AHo reports personal fees from GW Pharmaceuticals. PSz receives research funding from the Canadian Institutes of Health Research and royalties from Guilford Press and Simon & Schuster for books. PSh reports support from the Health Resources and Services Administration of the US Department of Health and Human Services under the Autism Transitions Research Project (UJ2MC31073). VS is supported by the National Institute for Health Research (grant numbers EME 13/119/18, RP-PG-1211–20016, and 15/162) and a grant from Autistica (number 7262). GD reports grants from the UK Medical Research Council and Grand Challenges Canada, outside the submitted work. All other authors declare no competing interests.