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Tuesday, December 7, 2021

Lancet Commission on Care and Research

In The Politics of Autism, I discuss evaluation and diagnosisI also discuss international perspectivesComparative public policy on autism services and research needs far more study.

Recommendations from  the Lancet Commission on the future of care and clinical research in autism
Although autism affects at least 78 million people worldwide, formal documentation of their existence is limited to a subset of countries. Formal documentation through governmental health-care, education, and social care systems for people with autism would be a first step in determining the needs and addressing the potential inequalities faced by these individuals.

Autism is a complex but common neurodevelopmental disorder that requires personalised assessments and intervention strategies. A stepped care and personalised health model to assess and direct interventions can increase the effectiveness of approaches. Governments and health-care systems must recognise the need for integration across systems to support the needs of autistic individuals and their families across development.

Autism is a neurodevelopmental disorder that changes with and affects development; a single assessment or a single treatment is never sufficient. Follow-up assessments and personalised treatment plans that focus on individual strengths, difficulties, and changes in contexts and expectations across the life span are needed.

Interventions for autism and for co-occurring conditions should begin as soon as signs are noticed and then monitored with more comprehensive assessment once begun. No one should wait for months or years to start treatment because they are unable to find an appropriate assessment. However, within a reasonable period of time (depending on age and context), assessments do need to be supported and undertaken to identify personalised needs.

Focused research strategies at the government or institutional level should be prioritised with an emphasis on clinical practice that can increase the understanding of what interventions work, for whom, when, how, with what general outcomes, and at what cost. National and international infrastructures should be developed to help such projects to move beyond single investigator-led (albeit multisite) studies to more integrated attempts that take into account individual differences within autism. Infrastructures should also support studies that build on each other and provide evidence for broader community implementation and effectiveness, rather than simply showing that an intervention is better than a waiting list or treatment as usual.

Governments and services should monitor access to provision to ensure that underserved groups, including those who are minimally verbal, girls and women, minority ethnic groups, from socially disadvantaged backgrounds, or with severe co-occurring conditions, have equitable access to appropriate services.