Picture of Melbourne, Australia at night.
Melbourne meeting: Researchers at INSAR 2024 have much to learn from Indigenous and low-resource communities about their needs and creative solutions to meet those needs.
James O’Neil / Getty Images

Autism research is becoming more diverse but not yet more global

Hosting the International Society for Autism Research annual meeting—which starts tomorrow—in Australia takes a step in that direction, making it easier for researchers, clinicians and advocates from the Western Pacific Region to participate.

“We don’t need equitable participation in research. It is entirely possible that all discoveries in our field can be made in New York.” I’m not often at a complete loss for words, but this recent emphatic statement at a meeting in the United States organized for autism researchers from around the world caught me by surprise. Perhaps it shouldn’t have.

Almost everything we know about autism comes from a handful of WEIRD (Western, educated, industrialized, rich and democratic) countries in the so-called “global north,” yet most autistic people live in low- and middle-income countries (LMICs) around the globe that are quite different from these predominantly English-speaking nations. In a review conducted in 2017, my colleagues and I discovered that less than 1 percent of all autism research to date was performed in Africa, a continent that is predicted by UNICEF to be the home of more than 40 percent of the world’s children by 2050. At the service level, the majority of people in LMICs receive no diagnoses or supports, and in the few—typically urban—areas that can offer services, families often have to pay out of their own pocket. Finding strategies to meet the needs of autistic people and their families in LMICs is therefore fast approaching critical levels.

Scientists have made some progress toward diversifying autism research in high-income countries, by setting up initiatives to increase the diversity, equity and inclusion of the researchers, organizations and communities involved. My colleagues and I acknowledge those efforts. But unless autism research becomes diverse and global at the same time, we will retain the “knowledge gap” between the high-income/English-speaking nations and the rest of the world.

The International Society for Autism Research (INSAR) annual meeting begins tomorrow in Melbourne, Australia. Having this meeting in Australia, rather than in the U.S. or Europe as has previously been the case, is a values-based action intended to make it easier for researchers, clinicians and advocates from the Western Pacific Region to participate. The program deliberately includes panels and special-interest groups on the perspectives and needs of Indigenous, minority and other marginalized groups across the Western Pacific Region. Discussions are also slated to include the research priorities of diverse communities across the globe.

Hosting international conferences in different parts of the world is a first step in “democratizing” access to the latest efforts and thoughts in autism research. It is also a powerful opportunity for networking at a global scale so that researchers from a particular region, who may otherwise not have had financial resources to attend an in-person conference, can now meet a broad range of peers.


f course, equitable participation is not just about where international conferences are held. Broadening the global research spotlight going forward requires many actions—smaller and larger, cheaper and more expensive—to change the global autism research landscape.

Setting up research awareness training in LMICs and other underrepresented communities would increase understanding of the value, power and place of research. In most LMICs, for example, people think of research as an “ivory tower”-based, abstract activity of no direct relevance to them. We also need a better understanding of the barriers to participation for children, adults, families and researchers from LMICs and other underserved global communities. These insights would inform more appropriate and targeted initiatives to reduce those barriers to participation.

When research is conducted in LMICs and other underserved global communities, it must leave behind more than it takes away, which means nurturing and empowering the communities engaged in research. We also must work collaboratively not only to build research capacity in the emerging generation, but also to train, mentor and support senior clinicians and clinical researchers who may have had little or no research training of their own.

International funding agencies need to consider how to shift the dial toward global research in which LMICs and other underserved global community investigators are active and equal participants in—or, even better, leaders of—research, and not merely passive providers of data. Funders should also be brave enough to fund research in LMICs that may not necessarily look the same as typical “high-quality” research in high-income countries.


utism research journals, too, must become more global and diverse, and not just talk about it. The majority of autism journals have minimal representation from LMICs on their editorial boards. This lack means that contextual knowledge about the potential value or impact of research questions cannot be judged appropriately.

Language remains a major barrier to participation, not only for autistic children and their families, but also for researchers from LMICs, and from many non-English-speaking high-income countries. We have to think about how we can make all research activities linguistically more accessible, even if it may sometimes cost more time and money.

Perhaps the bravest action required is to encourage and celebrate theoretical and other research frameworks that emerge from LMICs and other underserved global communities. The current dominant research culture is a high-income one that is then “applied” or “adapted” in LMIC contexts. I have no doubt that we have much to learn from Indigenous and low-resource communities about their needs, challenges and how their unique theoretical frameworks have led to creative solutions to meet those needs.

Many of these conversations can start this week in Melbourne. But once the meeting is over, there must be greater urgency to bring organizations around the globe together to discuss and debate these issues of equitable participation in autism research. Then, the best ideas must start to be translated into actions. We have already lost too much time.

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