Laying Out a New Model for Autism Care
February 02, 2022
By: Sherri Alms
The Lancet Commission on the future of care and clinical research in autism proposed and described a new model of care and treatment for autism in a report released at the beginning of December, calling for global coordination among governments, health care providers, educational programs, financial institutions, and social sectors to reform research, care, and treatment. Their recommendations were suggestions, based on the Commission’s expertise, but are not binding for any organization to implement. As noted in the Commission report, 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.
The Commission focused on proposing key recommendations that could be implemented in the next five years and offer the potential to have positive effects, both immediately and in the long term, for autistic individuals and their families around the world. It also called for research efforts to expand beyond basic science toward developing evidence-based practical interventions tailored to the heterogeneous needs of autistic people and that could be applied to other neurodevelopmental conditions.
The Commission noted how widely varied autism can be from person to person, from those who need little support and intervention to those who require 24-hour care. In addition, the circumstances, needs, strengths, and preferences of autistic people and their families are also highly individual. A family with an autistic child with social challenges and academic strengths will need different interventions than a family with an autistic child with intellectual disabilities. An autistic adult living in a highly rural community with limited access to healthcare or specialized school services will require support that an autistic adult living in an urban area does not. In addition, a person’s needs change as they age, contributing to the wide variance in needs. To meet those widely varying and changing needs, the Commission proposed a system of personalized stepped care.
In recognizing the diversity that exists among autistic people, the Committee also proposed creating a “profound autism” designation in order to meet the needs of 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. It did not suggest using the designation for diagnosis but rather to encourage both clinicians and researchers to prioritize the needs of that group of autistic people. In considering that recommendation, the Commission found that the designation of profound autism would apply to between 18% and 48% of autistic people.
After the report’s release, that proposal generated a lot of discussion and controversy in the autism community. Some agreed about the value of such a designation, in terms of providing better access to appropriate care and services for those whose need require a higher level of support, while others argued that categorizing groups of people with labels may not accurately capture their individual strengths, needs, and circumstances.
Shannon Des Roches Rosa, an OAR contributor, for example, wrote on the Thinking Person’s Guide to Autism website, where she is a senior editor, co-founder, and community manager, that the term is “not very useful to parents like me, or autistic people like my son. What parents of high-support autistic kids like me need instead is more awareness of and connection with the other communities who understand our kids’ high-support traits, like the disability and non-speaking communities—in addition to the wider autistic community.” It’s not, she notes, that she doesn’t realize the frustration parents of children with higher support needs have around getting the services they need. The solution, she says, is not categorization, but connection with “all the communities that include their kids, like the disability and communication communities in addition to inclusive autism communities.”
Commission member Alison Singer, co-founder and president of the Autism Science Foundation and the mother of a child meeting the description of profound autism, writing in StatNews, agreed that labels can “misrepresent and dehumanize people,” but also believes that “concise, meaningful terms like profound autism will simplify the process of determining appropriate care, leading to quicker and more forceful interventions.” Her daughter, Jodie, she writes, is a good example. When Jodie was mainstreamed, she was miserable. Placed in a group living facility with intensive supports, she thrived.
The Commission recommended changing the focus of research and practice from research in biology and studies of single interventions to research that examines integrating care across systems over time and accounts for the range of difference within the autism spectrum. Looking at autism through that research lens would lead to better outcomes, the report noted.
Research is needed, for example, into the factors that enable people with autism to live fulfilling lives, the elements that lead to effective interventions, and the wider environmental barriers that impact autistic people.
Commission co-chair Prof. Tony Charman, King’s College, London, called for “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.”
In most countries, autistic people and their families who live outside of urban areas have little or no access to assessments or evidence-based interventions. 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.
There is also a research gap when it comes to assessing and treating developmental disabilities like autism in low-income communities because studies take place primarily in high-income communities. For example, although sub-Saharan Africa and southeast Asia showed the greatest rise in the diagnosis of developmental disabilities of all world regions over the past 30 years, a review found that less than 1% of the world’s autism research originated from sub-Saharan Africa. Commission member Dr. Gauri Divan, Sangath, India, says that tackling the scarcity of resources for autism care and treatment worldwide is critical and governments and health systems should be held accountable for providing that support.
As explained in the Lancet Commission report, much can be undertaken now for autistic people that will lay a foundation for improved, comprehensive, equitable care in the future. By beginning at the level of the autistic individual and their family’s needs, a system of care that encompasses everyone’s needs is possible, as the Commission report describes. The report explains that it is necessary to build capacity capable of strengthening care systems, particularly in low-resource settings and underserved communities. Taking a multi-dimensional approach predicated upon individual needs and community settings has the potential to create dynamic, adaptable intervention and service models that can serve the needs of all autistic individuals across the lifespan.
“Ultimately, the message of the Commission is one of hope,” write Dr. Richard Horton, editor-in-chief of The Lancet, and Helen Frankish, executive editor of The Lancet, in an introductory comment to the Commission’s report. “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.”
Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.