A report published in The Lancet is calling for a new, comprehensive model of autism care and treatment that prioritises personalised, stepped care approaches.
The authors of the Lancet Commission – made up of international experts, including clinicians, researchers, self-advocates, and parents of children with autism – say there must be a global coordination of autism care that prioritises individualised treatments with active participation from patients and their families.
The report says that urgent action must take place within the next five years to address the current needs of people with autism and families worldwide. It also 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 new approach moves away from a categorical diagnosis and towards a focus on support, centred around their unique concerns, needs, characteristics, and circumstances that can be adjusted throughout their lives.
The authors of the Lancet Commission stress the value of neurodiversity among people with autism, and propose a way of deciphering between different types of autism, particularly for administrative purposes (rather than a formal diagnosis).
They suggest that the term “profound autism” is adopted by 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.
This, the researchers hope, will encourage both the clinical and research global communities to prioritise the needs of this vulnerable and underserved population, improving the quality of life for individuals 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 individual needs of people living with autism.
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.
The Commission say 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.
Commission co-chair Dr Tony Charman of King’s College London (UK) said because basic science if often prioritised over practical knowledge, people living with autism, their families and care providers are often left without evidence-based guidance.
He added: “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.”
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.
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.
Co-author Dr Gauri Divan of Sangath, India says it is “imperative” that the scarcity of resources for autism care and treatment are addressed and tackled. “In these settings,” she says, “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.”
The authors say that much more can be done now for autistic people that will lay the foundation for improved, comprehensive care in the future. Their recommendations for change focus on beginning with an individual’s needs and continually involving stakeholders at each step of the way.
They add that capacity building is essential to strengthening care systems (particularly in low-resource settings and underserved communities) and hope that 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.
As Dr Richard Horton, Editor-in-chief of The Lancet and Helen Frankish, Executive Editor of The Lancet, write in their introductory comment for the paper: “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.”
