Highlights
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A new, comprehensive model of autism care and treatment that prioritizes personalized and stepped care approaches is urgently needed, according to a new international report published in The Lancet .
Authors of the Lancet Commission on the Future of Autism Care and Clinical Research call for global coordination between governments, health care providers, education, financial institutions and social sectors to reform research, care and autism treatment that will include individualized treatments throughout a person’s life with the active participation of patients and their families.
The Commission was formed in 2018 by international experts, including physicians, healthcare providers, researchers, advocates, self-advocates, and parents of children with autism. The report identifies urgent actions required over the next five years to address the current needs of people with autism and their families around the world and to lay the foundation for better care and treatment in the future.
The report sets out a new standard of care that all social care services and systems around the world should adopt to better support the needs of people with autism and their families.
The Commission also calls for global research efforts to expand beyond basic science toward the development of practical, evidence-based interventions that are tailored to the heterogeneous needs of people living with autism and that can be applied to other neurodevelopmental conditions. .
Personalized and stepped model approach to care
At least 78 million people live with autism worldwide, most 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 approach to personalized and stepped care is urgently needed. This new approach moves away from a categorical diagnosis toward a focus on support to improve the quality of life of individuals and their families centered on their unique concerns, needs, characteristics, and circumstances that can be adjusted throughout their lives.
"Although there are numerous well-proven interventions and treatments for autism, not enough is known about what treatments or services should be offered, when, to whom, for how long, with what expected results, and at what cost," says the co-chair of Commission Dr. Catherine Lord of the University of California, Los Angeles (USA).
“Autism is an incredibly heterogeneous condition and treatment approaches should vary not only among people living with autism, but throughout a person’s life. “This stepped care approach requires global coordination between governments, social sectors, healthcare providers, educational and financial institutions, and between people living with autism and their families.”
The Commission also reiterates the value of neurodiversity among people with autism, or the natural variability within the human brain and mind, in creating stronger, wiser communities and positive social values. At the same time, the Commission proposes that the designation ’profound autism’ be adopted for people with autism who are minimally verbal or non-verbal, cannot 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 global clinical and research communities to prioritize the needs of this vulnerable and underserved population. The authors validated the profound autism designation in three databases and found that it would apply to between 18% and 48% of people with autism.
Prioritize meaningful research and clinical practice
National and international infrastructures must be developed to help prioritize research that goes beyond biology and studies of individual interventions to focus instead on those that integrate care across systems over time and take into account differences. individuals within the autism spectrum that lead to better outcomes.
Recent high-quality trials among young children with autism have identified psychosocial interventions that may result in changes that could mitigate the influence of autism on the development of some people. Research is now needed to identify what factors enable people with autism to live positive and fulfilling lives, the key elements of effective interventions for children and adults, and the broader environmental barriers to change for people with autism.
“Basic science is often prioritized over more practical knowledge, leaving people living with autism, families, and providers without evidence-based guidance. People with autism are a valuable 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 leverage existing information to answer specific practical questions that will then better inform interventions and services to help. people living with autism to reach their full potential,” says Commission Co-Chair Professor Tony Charman of King’s College London, UK.
Overcoming global inequalities in assessment, care and treatment
The needs of families living with autism around the world are universal. The World Health Organization (WHO) has recognized autism as a global health priority, with key recommendations for all member states to implement. But many people with autism remain undiagnosed, especially in low-resource settings, where surveillance for any neurodevelopmental disorder is rarely performed.
Families often have limited access to assessments and other resources to evaluate and treat autism or other neurodevelopmental conditions. Additionally, many families may not seek evaluation or treatment due to limited awareness of autism, social and cultural stigma related to neurodevelopmental conditions, and financial barriers.
“It is imperative that we address the shortage of resources that exist for autism care and treatment around the world, especially for individuals and their families living in resource-limited settings where autism and other neurodevelopmental conditions may be stigmatized or overlooked, leaving children undiagnosed until adulthood. or in many cases never diagnosed.
In these settings, where the majority of the world’s children live, people should not have to wait months or years to begin treatment because they cannot find an appropriate evaluation and, once they are identified with specific needs, their geography, their Socioeconomic status and social status and access to services should not be a barrier to receiving care. Women, minority ethnic populations, people living with profound autism, and people with other co-occurring conditions, such as anxiety, depression, behavioral problems or sleep disorders, are also often more marginalized 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 improve our entire society,” says co-author Dr. Gauri Divan from Sangath, India.
Improved care today and for the future
The authors write that much more can now be done 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 clinical practice and systems change are based on starting with an individual’s needs and with the continued involvement of stakeholders, including people with autism, families, community members who provide support and suppliers, every step of the way. Capacity building is essential to strengthening systems of care, particularly in low-resource settings and underserved communities.
These multidimensional approaches will produce dynamic, personalized models of intervention and services that will be the key to a better future for people 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 emphasize improving the quality of life for all people autistic people and their families by seeking better information about the needs, strengths, and most effective services for autistic people across the lifespan and developmental stages.
Ultimately, the Commission’s message is one of hope. Studies have shown that much can be done to improve the life outcomes of autistic people. “But concerted action is needed without delay to answer fundamental questions about the care of autistic people, along with developing policies and programs to improve the lives of all autistic people around the world.”
