ND conference aims to link research, lived experience

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Next month, researchers, clinicians and neurodiversity advocates plan to gather in Edinburgh, Scotland, for the “It Takes All Kinds of Minds” (ITAKOM) conference. The meeting, scheduled for 13 to 14 March, focuses on “the science and reality of neurodiversity” and “bringing together different perspectives” to “create a neurodiversity affirmative world,” according to the ITAKOM website.

Its sponsor, the Scottish charity Salvesen Mindroom Centre, has hosted five previous conferences on “learning difficulties”; it supports people with neurodevelopmental conditions through one-on-one consultations, public advocacy and research collaborations. ITAKOM is the group’s first gathering since 2011, and its first to explicitly highlight neurodiversity.

ITAKOM’s program comprises a mix of research and non-research sessions, divided into four themes: health care, workplace, community and education. There will be a variety of lectures, workshops and panels — including 16 oral presentations and 8 poster sessions — on such topics as research priorities and attitudes, perception and attention studies, and legal frameworks for workplace inclusion. The program also highlights first-person perspectives from neurodivergent people.

The event is an opportunity for scientists to learn about “what happens in reality,” says ITAKOM co-chair Sophie Dow, who founded Salvesen Mindroom Centre in 2000 and is the parent of a developmentally disabled adult.

The conference fills a niche for people interested in neurodiversity, says Connie Kasari, distinguished professor of human development and psychology at the University of California, Los Angeles. Kasari is the current president of the International Society for Autism Research (INSAR), which hosts the largest autism research conference — and which, she points out, has a broad audience but focuses on scientific knowledge. By contrast, ITAKOM is “not just research; it’s around services. It’s around lived experience.”

he meeting offers scientists the opportunity to engage with “people and families and communities” directly impacted by their research, says Mary Doherty, an honorary clinical research fellow at Brighton and Sussex Medical School in England, and founder of Autistic Doctors International. She plans to present her research on the experiences of autistic people in medicine. “It’s absolutely vital that those working in the field on basic science have an understanding of the implications of their work.”

At the same time, “the boundaries between researchers and the community are blurry,” says Steven Kapp, senior lecturer in psychology at the University of Portsmouth in England. Kapp says he hopes to attend the conference; a colleague is slated to present research he co-authored on autistic perspectives on the neurodiversity movement. A growing number of researchers are neurodivergent, he says, and participatory research includes collaborators who lack a traditional academic background.

Because ITAKOM explicitly affirms neurodiversity, it may lead to people being “more comfortable expressing themselves and sharing their insights,” says Kristen Gillespie-Lynch, associate professor of psychology at the City University of New York’s College of Staten Island and Graduate Center. Two studies Gillespie-Lynch co-authored with autistic researchers are scheduled to be presented at the meeting.

The most exciting aspect of the event is its “advocacy potential,” she says. “People can work together across identity.”

ITAKOM has made multiple gestures toward inclusivity. Several researchers note that the organizers plan to offer a virtual option — something INSAR is not offering this year — and Dow says delegates can apply to have part or all of their registration fees waived.