On 23 March 2023, the U.S. Centers for Disease Control and Prevention (CDC) released the most recent findings from their Autism and Developmental Disabilities Monitoring (ADDM) Network of 11 sites across the United States. They reported that 1 in 36 children across the ADDM sites meet the “case definition” for autism, with prevalence ranging from 23.1 per 1,000 in Maryland to 44.9 per 1,000 in California. They documented co-occurring intellectual disability in 37.9 percent of those with autism.
The study exemplifies a particular kind of autism research (“administrative” epidemiological surveillance) in a specific context (children between specific ages only at particular sites in the U.S.). Yet various researchers and clinicians from African countries have asked me whether the findings mean that we must also have such high rates of autism in our part of the world.
My response is to tell them about our attempts to perform something similar to the ADDM’s approach at the Centre for Autism Research in Africa (CARA) in Cape Town, South Africa — with very different findings. After carefully searching data on more than 1 million school-aged children registered in the comprehensive Education Database in the Western Cape, one of the South African provinces, Sarosha Pillay and her colleagues from CARA found a rate of 0.08 percent (1 in 1,228 children). There were almost as many autistic children waiting to get into school as there were already in school, and 90 percent of the children in school were in autism-specific educational placements, not mainstream schools.
Our interpretation in South Africa was that we probably know of only about 1 in 10 autistic children in our education system, which means we have an enormous task ahead of us in terms of awareness-raising, identifying autistic children and developing of a full range of appropriate educational environments for them. I tell people that the starkly different results between the U.S. and South Africa illustrate how research and practice priorities may differ dramatically depending on where we are, and underline how important it is to consider context before we “translate” findings from one part of the world into “actions” in another.
Regular attendees of International Society for Autism Research (INSAR) conferences might vaguely recognize the title of this piece. It was the title of my keynote at INSAR 2021, scheduled to take place in Boston, Massachusetts, but held online as a result of the COVID-19 pandemic. In my talk, I told two “stories” that still very much relate to conversations today. The first story was about tuberous sclerosis complex, a genetic condition strongly associated with autism and many other co-occurring conditions, and the second was about autism in Africa. My key messages were first that we should all strive to do research that is truly in participation with the communities we serve and allow ourselves to be pleasantly surprised by how this directs our research, and second, that we should accelerate research in low- and middle-income countries, where the majority of autistic people and their families live, yet where almost no research has ever taken place.
I am very much looking forward to INSAR 2023, which kicks off in Stockholm, Sweden, today, and the range of research we will hear and see. Looking at the program, the keynotes are encouragingly diverse — from Wendy Chung, director of clinical research at the Simons Foundation Autism Research Initiative, who plans to talk about autism genetics and how to involve the community, to Gauri Divan, director of the Child Development Group at Sangath, a nonprofit organization in Goa, India, who plans to talk about care models in low-resource contexts, to Pat Howlin, professor emerita of clinical child psychology at King’s College London in the United Kingdom, who plans to talk about aging with autism.
I very much look forward to these presentations and related panels, talks and posters. And I am curious about how mindful of the needs and preferences of the autistic community, and how culturally, linguistically and geographically representative, all these sessions (apart from the keynotes) will be.
We have only to look at the INSAR journal, Autism Research, to see the wide range and different kinds of scientific outputs in recent years. Over the past 10 years, however, a different kind of research has emerged, with autistic (and non-autistic) researchers doing qualitative and participatory research. It has been very exciting to see new questions, new approaches and new findings, also on the pages of Autism Research.
We are seeing a growing discourse about the “language of autism” — how we talk about autism, its “severity” and the vast range of conditions that may co-occur with it. Sometimes it makes for uncomfortable reading. For example, researchers such as Monique Botha, associate lecturer in psychology at the University of Surrey, and Eilidh Cage, lecturer in psychology at the University of Stirling, both in the U.K., have pointed out that the language of autism research has made autistic people feel dehumanized, objectified and stigmatized. “Autism research is in crisis,” they propose, because of a philosophical conflict about how to think about autism and therefore what autism research should look like.
This is a fundamentally important conversation for all of us to engage with, and it is very much linked to questions I highlighted in my 2021 keynote about the “kinds” of autism research we do and “where” we should do it. So I hope we will also be able to have some of these conversations at INSAR 2023.
As I noted two years ago, the purpose of research may be different for different communities. Autism advocates are leading research on acceptance, inclusion, enabling environments and policy change. Biological researchers lead work that tries to make fundamental discoveries about the condition’s underlying mechanisms, which may improve future outcomes. Global and implementation science researchers, meanwhile, try to understand local needs and systems in order to prioritize those needs and strengthen those systems to reduce health disparities and other inequities.
One of the keywords from my talk in 2021 was the concept of “social responsiveness,” meaning our starting point needs to be to seek a true understanding of the “social and societal” needs and priorities of autism stakeholders at all levels of society in each of our own communities (and at a global level); once we know that, we can do research that will contribute to our communities and improve their quality of life and environments. If we use that as the guiding principle, I have no doubt that we can do research with relevance, in participation with all the communities where people with autism live.
Petrus J. de Vries is founding director of the Centre for Autism Research in Africa (CARA) at the University of Cape Town in South Africa, and president of the International Society for Autism Research from May 2023 to May 2025.
This content was originally published here.