Aimee Grant investigates the needs of autistic people

Before becoming a researcher, Aimee Grant worked as a caregiver for six years in Cornwall, England, supporting autistic adults in group homes. But only more than a decade later, after befriending an autistic colleague at a sociology conference, did she realize she was autistic herself.

The stereotypical view of autism as a brain impairment more commonly found in men made it difficult for Grant to make sense of her internal world. From an early age, she struggled to pick up on important social cues and found the sounds and scents in her environment distractingly painful. But like many children in her generation, she says, she grew accustomed to either dismissing or disguising her discomfort. It was by listening to some of the stories of her female peers that Grant saw that the label could fit.

Receiving a diagnosis in 2019 prompted her to “reframe [my] entire life,” she says. She began working with her mind rather than against it. She no longer felt the same pressure to seem as nonautistic as possible with friends and family members, and she began to make use of accommodations at work, such as a light filter for her computer monitor.

Today, as a public health researcher at Swansea University in Wales, Grant aims to uncover the lived experience of autistic people. Many scientists and clinicians see autism as a developmental disorder that hinders a person’s ability to understand and communicate with others. Grant believes that their work often obscures the heterogeneity of autism. And because many studies view autism as a disease, they overlook the reality that autistic people can feel more disabled by widespread misunderstanding and a lack of accommodations than by autistic traits themselves.

My work has a purpose: to make lives better for marginalized groups.

Aimee Grant

In line with the thinking of the neurodiversity movement that emerged in the 1990s, Grant views autism as a cognitive difference, rather than a deficit: an alternative way of being in the world just as deserving of understanding and acceptance as any other. “I would say I’m disabled because of a range of different things, including being autistic,” she explains. (Grant has dyslexia and uses a wheelchair.) “But were I in a different environment, I don’t think I’d necessarily be disabled by being autistic — I think it’s those kinds of neurotypical expectations that can make life quite difficult.”

So Grant is asking a different research question: What might autistic people need?

She’s among a growing group of neurodivergent researchers whose science seeks to better serve its participants. Large surveys conducted in the United States and the United Kingdom suggest that the majority of autistic people would choose to spend research dollars on actionable studies on well-being versus studies of the basic science of autism. At conferences and in private Facebook groups, researchers trying to shift science’s focus now number in the hundreds.

Grant’s current work centers on autistic mothers and parents with wombs. Through extensive surveys and interviews, she’s studied the barriers some autistic parents face in breastfeeding and identified ways clinicians can temper the pain of their patients’ pregnancy loss, such as by using clear and direct language or allowing partners or patient advocates into hospital rooms. On a YouTube channel she helped launch last year, autistic people share details of pregnancy and parenting. And she’s cofounded the Autistic Health Research Network, a small but international association of researchers seeking to better health care outcomes in the autistic community.

A passion for improving lives powers her research and outreach, says Karen Henry, a lecturer in midwifery at the University of Suffolk in England. Both Henry and Grant are part of the U.K.-based Maternity Autism Research Group. “I don’t know how she has enough hours in the day.”

Reimagining autism research

Grant’s work aims not only to serve study participants, but also to amplify their voices. By aggregating personal accounts, her research gives participants’ testimonies weight they often lack on their own, Henry says.

In one breastfeeding study, published last November in Maternal & Child Nutrition, Grant’s team surveyed 152 autistic birthing parents in the United Kingdom. The team found that nearly 70 percent of participants enjoyed breastfeeding overall. But 45 percent reported dealing with pain roughly half the time or more. One parent likened the feeling of the let-down reflex that gets breastmilk flowing to “an old-fashioned telephone ringing in my breasts.”

Still, most remained committed to breastfeeding, which the World Health Organization recommends women do exclusively for at least six months. The parents came up with creative solutions to ease their discomfort, including wearing clothing that exposed less of the most sensitive skin, wearing nipple shields and distracting themselves with videos or games on their phones.

Parents who received support from health care professionals, such as midwives or lactation consultants, tended to have a much easier time with breastfeeding. But nearly half of study participants had a negative interaction with at least one clinician, either struggling to access services, receiving incomplete or conflicting health information, or even feeling that their struggles were flat-out dismissed.

In the United Kingdom, just 1 percent of all mothers meet the WHO’s six-month recommendation, according to the latest available data from 2010. Grant and colleagues attribute this low rate to structural impediments, such as inadequate support for breastfeeding parents and aggressive campaigning by the formula industry, not to a lack of trying on the part of parents.

Grant says she has always wanted to “change perceptions about groups,” especially those criticized in the media, in regards to the broader ethos of her work, “to help the wider public recognize just how hard that group is working.”

To shed light on things that might not be known by policy makers, Grant has communicated her findings to the public in news articles and at conferences. The YouTube channel she helped launch now features more than a hundred clips of autistic parents and maternity experts sharing their expertise.

In 2022 Grant won a $3 million grant for an expansive study characterizing the broad reproductive health care needs of autistic people with wombs, from menstruation to menopause. The project, funded by Wellcome, will recruit 100 participants, interviewing them every six months for a total of five years.

“There’s a lot more questions than answers at the moment,” Grant says. Some of her team’s questions include: How can individuals manage the sensation of a period cramp or of ultrasound gel? What contraceptives do participants use, and what are their experiences? Are there differences in how autistic people sense and communicate bodily pain to health care professionals compared with what the research says of nonautistic people?

A project of such size and duration will identify areas where autistic people’s health care needs are not being met, Grant predicts. It may uncover positives of the autistic experience, as well as new avenues for research. Her team plans to keep the interviews loosely structured to “give people the space to talk about the things that are important to them.”

The team — made up entirely of autistic researchers — aims to capture the diversity within the community by partnering with autism organizations that serve individuals of various ethnic backgrounds and learning abilities, by paying participants for their time and for sign language interpreters if needed, and by allowing participants to choose to respond to questions through a video call, on the phone or via email. The researchers will also use their own neurodivergent perspectives to anticipate hurdles for participants: for example, putting text in fonts and colors that are easier to read or eliminating exclusionary phrases such as “autistic women,” which leaves out transgender and nonbinary people with wombs.

Grant is “really one of those practice-what-you-preach people,” says Rebecca Ellis of Swansea, one of four research assistants working on the project. “She is continually making sure that she can be as inclusive as possible and amplify the voices that get heard the least.”

Keeping an open mind

Grant doesn’t claim to have the single answer on what research on autism should look like; she’s committed to having an open mind. “I’m sure in 10 years we’ll have even more of a social model of autism,” she says, referring to a well-established view of autism as a disability constructed in large part by society, “and where we are now will seem outdated.” For now, she’s helping to get different perspectives in the room, collecting evidence for the theory that one’s environment can be more disabling than one’s predisposition.

Grant’s path to science may be part of what makes her work so unconventional.

Growing up, she did not expect to become a researcher. Her father was a firefighter, and her mother a housewife. In school, she just kept pursuing “the next thing that was interesting.” She attributes where she is today in large part to chance.

She pursued a Ph.D. in social policy at Cardiff University, where she studied competing political narratives around disability-benefit users, debunking a prominent myth that claimants were exploiting the welfare system. After completing that work, she needed to find a job near her home in order to reserve a spot on a waiting list for much-needed surgery. She worked in Cardiff as a research assistant, studying how well the National Health Service’s smoking cessation programs work, and then was asked to shift her focus to maternity. After her own autism diagnosis, she began to focus on autistic parents.

Along the way, she tended to be drawn to and stick with jobs with a social justice ethos. “My work has a purpose: to make lives better for marginalized groups,” she says. “It’s almost painful for me to do research that isn’t in those areas.”