Feature
WHO DECIDES
THE AUTISM
SCIENCE AGENDA?
Despite broader acceptance of neurodiversity,
autistic advocates and scientists are still
fighting for a chance to set priorities in the
research. By Emiliano Rodríguez Mega
I
n 2019, after finding out that her toddler, including researchers, physicians and clini-
Luna, was autistic, Yadira García Rojas cians, who argue that autism research, writ
became fixated on the condition. She large, is not serving the needs of autistic
would spend her days reading websites people and could, in fact, be causing harm.
and academic papers, trying to learn “The research agenda is not set with autistic
whatever she could to help her daughter, people’s interest or well-being in mind,” says
who doesn’t speak and needs full-time GATFAR member Heini Natri, a computa-
care and support. tional scientist at the Translational Genomic
When the treatments started, they came as Research Institute in Los Angeles, California.
something of a shock. At a clinical centre for She and others say that despite grow-
mental health in Mexico City, therapists would ing awareness of autism and acceptance of
encourage Luna to talk by offering her straw- neurodiversity in many parts of society, the
berries, then take them away until she asked academic and clinical research community
for them verbally. They would punish the girl still generally considers autism a disease, a
when she flapped her hands or did not make disorder, a problem to be solved. The focus
eye contact, García Rojas remembers. And they of research and therapies, they say, is often
would make her crawl through a play tunnel on suppressing autistic traits and adopting
IT WAS LITERAL
that she was terrified of — sometimes until she neurotypical behaviours, rather than devel-
stopped crying. oping services and programmes to support
TORTURE. I ALWAYS
“It was literal torture,” says García Rojas. autistic people.
Most of the interventions, she says, seemed At the end of 2021, an influential report
CAME OUT IN CRISIS.”
directed at making Luna and other children in The Lancet setting clinical research pri-
hide their autism — to be less themselves — no orities for the next five years angered many
matter the cost in tears and screaming. “I autistic advocates because of its focus on
always came out in crisis.” studying medications and behavioural ther- them and thus control the direction of autism
García Rojas stopped the therapy sessions apies, and because it adopted the term “pro- research,” wrote Amy Lutz, vice-president of
shortly after COVID-19 hit Mexico in 2020. A found autism” to describe autistic people the US National Council on Severe Autism in
year later, she received her own autism diagno- who require round-the-clock care, and who Philadelphia, Pennsylvania, in an opinion arti-
sis. She started a local advocacy group aimed at are often non-speaking, minimally verbal or cle in January (see go.nature.com/3vtycmn).
reducing stigma against autistic people in Mex- intellectually disabled1. But such warnings are groundless, says
ico and later joined an international coalition It reignited a debate over who gets to set Mary Doherty, a member of GATFAR who is
focused on shaping the research agenda, the the agenda. Pushing back against GATFAR based in Navan, Ireland, and founded Autistic
Global Autistic Task Force on Autism Research and other activists were researchers and Doctors International, which represents more
(GATFAR). The group, made up of autistic sci- parents arguing that autistic people who are than 700 autistic physicians from around the
entists, physicians, therapists and advocates, non-speaking or intellectually disabled — and globe. Autistic people have historically had no
aims to help change how academics see autistic their families — are at risk of being left behind control over what non-autistic researchers say
people, which influences how physicians and and forgotten about. They’ve likened some of and do, she says, “but it’s a narrative that suits a
therapists work with them, she says. “If there’s the arguments made by autistic advocates to certain part of the research community”.
no change there, there’s no change anywhere.” censorship that could drive young scientists More autistic and non-autistic researchers
Formed in 2022, GATFAR adds to a growing out of the field. “Researchers themselves need have started working together in studies that
chorus of autistic and non-autistic advocates, to push back against these attempts to muzzle prioritize the views of autistic people. For the
238 | Nature | Vol 617 | 11 May 2023
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most disparaging remarks came from Ole
Ivar Løvaas, a Norwegian American clinical
psychologist. During a 1974 interview, Løvaas
referred to autistic children — his patients —
as “little monsters” who were “severely dis-
turbed”. “You have a person in the physical
sense — they have hair, a nose and a mouth,”
he said, “but they are not people in the
psychological sense.”
Løvaas, who died in 2010, founded applied
behaviour analysis (ABA), a therapeutic
approach that aimed to make autistic kids
indistinguishable from their peers. Løvaas was
also a proponent of gay and transgender ‘con-
version therapy’. Today, ABA therapies remain
the most common type of autism intervention
covered by insurance in the United States. The
strategies used to modify children’s behaviour
have mostly improved — few providers still use
spanking or electric shocks. But even though
studies indicate that the therapies can teach
communication and socialization skills6, the
approach has been scrutinized for the lack of
solid supporting data. Some research even
points to the possibility that they can lead to
trauma and abuse — including a link to devel-
oping post-traumatic stress symptoms7.
“That’s what autistic people have been say-
ing for decades,” explains Doherty. “But we’re
not believed. We’re not seen as credible agents
of knowledge about our own lives.”
It could be a legacy of the field. Convention-
ally, autistic people have been silent subjects
in autism research, says Botha. “This has been
thought of as acceptable and, worse, it’s been
seen as desirable.” Data indicate that negative
attitudes towards autism are very much alive
Yadira García Rojas joined a global coalition to help shape the research agenda on autism. in the research community.
Late last year, Botha co-authored a study
past decade, some autistic people have been Texas Health Science Center in Houston and that interviewed about 200 autism scientists,
MARIAN CARRASQUERO FOR NATURE
leading the research. And some prominent a co-author of the paper on failed domestica- both senior and in training, to investigate how
scientists have begun to adjust their approach. tion2, says that the concept is technical and they understand the people they study. Nearly
“Neurotypicals and autistics, we’re both distinct from colloquial understandings of 60% of them openly expressed ableist views8
important,” says García Rojas. “If we work domestication. He adds that he has reached that stigmatized, dehumanized and objecti-
together, we’ll be better off.” out to Botha and other authors “to correct fied autistic people. One participant described
them, and I have never received a response”.) them as “shut down from the outside world”,
Silent subjects Despite being discouraged, Botha says, “rigid”, “emotional” and, oddly, “fat”. Medical
While working towards a master’s degree in one study, in particular, convinced them to views that autism is a disorder or disease cor-
psychology in 2016, Monique Botha regularly continue their research. It showed that autis- related with higher odds of ableist ideas, the
thought about quitting. Every other paper tic adults die on average 16 years earlier than researchers found. In turn, involving autistic
they read seemed to contain demeaning the general population, mostly from suicide4. people in research strongly correlated with
descriptions of people like them. Language For those with an intellectual disability, it was lower odds of ableism.
deficits in autistic people stem from a “failed 30 years earlier. The conclusions don’t surprise Tobi
domestication of the human brain”, one read2. “My community is bleeding, my community Abubakare, an autistic clinical psychologist at
Another concluded that autistic children lack is dying,” says Botha. In 2018, they and their Indiana University Bloomington. “It is a hostile
the uniquely human ability of sharing emo- adviser explained why, in a study that included environment,” they say.
tions, experiences and activities, much like more than 100 autistic participants. Internal- Botha thinks that the findings should be
non-human apes3. ized stigma and everyday discrimination, they explored more, but that they “really get to the
“I got exposed to that and I was like, ‘You found, built up stress that resulted in poor heart of the issue, which is power, including the
know what? I think I might be out,’” says Botha, mental health5. Botha says research is partly power involved in creating autism knowledge”.
who now works as a community psychologist at to blame. “If you continually describe autistic
the University of Stirling, UK, and studies how people through subhuman terms, then you will Here to help
autism research dehumanizes, objectifies and allow for subhuman treatment.” About four years ago, Kristen Bottema-Beutel,
stigmatizes autistic people. (Elliot Murphy, a Dehumanizing language has shaped an autism researcher at Boston College in
cognitive neuroscientist at the University of autism research for decades. Some of the Massachusetts, went through a personal crisis.
Nature | Vol 617 | 11 May 2023 | 239
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Feature
She had heard some autistic researchers and
advocates criticize her field as ableist, and
she couldn’t shake the feeling that she hadn’t
stopped to inspect her own work. Were her
descriptions of autism harmful? Had she her-
self been ableist?
She felt that a lot of her colleagues were
resistant to such reflection. “There’s this ten-
dency to be like, ‘Well, I’m beyond critique
because I’m just here to help.’” With that, she
says, comes a lack of scrutiny for many of the
treatments and interventions that are offered
to autistic people.
In 2020, for example, a meta-analysis
explored 1,700 studies on non-pharmaco
logical interventions — from sensory and
behavioural therapies, similar to the ones
García Rojas took Luna to, to some that are
animal-assisted or technology-based. The
results echo what several others have found:
most autism interventions rely on low- to mod-
erate-quality evidence9.
“When you actually look at the evidence, it is
not particularly strong,” says Bottema-Beutel.
Although she was not involved in that work,
she participated in another meta-analysis that
failed to find solid methodological rigour in Rachel Kripke-Ludwig helps to ensure that autism research is relevant to autistic people.
therapies for young children10. She and her
colleagues found that only about one-third scientists, as well as community members, Steven Kapp, an autistic developmental psy-
of studies that test behavioural interventions work together as equals. chologist at the University of Portsmouth,
are randomized controlled trials — the gold Since 2006, “we’ve kept that initial desire UK, “there’s little long-term [data] that clearly
standard for determining how effective a to say, ‘Hey, we want to do research that is indicate that autism research, as a whole, has
treatment is. important to the autistic community’,” says benefited autistic people”. The field, he says,
In other studies11–13, Bottema-Beutel has Nicolaidis. “has not served the needs of autistic people
found that many papers fail to disclose It’s a different way of approaching a field well”.
important conflicts of interest or to report in which non-autistic perspectives have typi- Even participatory approaches might not
unintended negative side effects, such as cally driven the decisions. Community-based be a silver bullet, however. Some efforts to be
children becoming distressed, hurt, bored or participatory efforts see autistic people as a inclusive end up being superficial and tokenis-
fearful as a result of an intervention. marginalized group, she says, rather than as tic, warns developmental psychologist Liz
The attitude is almost like, ‘nothing that patients whose brains have gone awry. Pellicano at University College London.
could result from our intervention would be In the conventional approach, several “That’s kind of critical,” Pellicano says. “To
worse than being autistic’, Bottema-Beutel researchers “are mostly working off the learn and actually take on people’s different
says. After all, “we’re just trying to help”. wrong set of assumptions”, writes Rachel expertise, there needs to be that shift” of
Kripke-Ludwig, a non-speaking autistic power.
A rising tide of change advocate and student based in Menlo Park,
When Christina Nicolaidis, a health-services California. “The best way to get it right is to Profound divisions
researcher at Portland State University in listen to us.” She, along with other autistic Feeding controversy is the 2021 Lancet report.
Oregon, started researching partner violence people, sits on AASPIRE’s community coun- The authors, an international commission of
in the 1990s, mentors told her that people who cil, discussing whether research questions are mostly non-autistic researchers and clinicians,
had experienced domestic violence “hated” relevant, recruitment protocols respectful and drafted clinical and research recommenda-
researchers. Nicolaidis was sceptical that they methods scientifically sound. tions for what should be done to address the
really felt this way. “That tells me that research- Earlier this year, AASPIRE launched a project needs of autistic people in the next five years1.
ers have screwed up,” she says. to understand what outcomes matter most Critics agreed with some of the report’s
After speaking to advocates and survivors, to autistic people — which could go beyond calls, such as tackling inequality and pro-
she realized that their views were rarely con- standard life achievements, such as marriage ducing better data on the effectiveness of
sidered in the research. That seemed mis- or employment. therapies. But the document, they said, mis-
guided: they had a wealth of knowledge and Studies show that autistic people want represented the views of some autistic peo-
experience that “no matter what I could learn more research on mental health, services ple by prioritizing studies on interventions
in my classes, I couldn’t get”, Nicolaidis says. and the other conditions that many of them and medications — as opposed to looking
The experience shaped her career. Now she experience — including epilepsy, gastrointes- into causes of death, mental-health sup-
and her colleague, autistic researcher Dora tinal pain, intellectual disabilities and sleep port, assisted communication or debunking
Raymaker, co-direct the Academic Autism problems14. pseudoscientific treatments.
Spectrum Partnership in Research and Edu- However, most funding goes to studies on “If autistic people [had been] included in
cation (AASPIRE) — one of the longest-stand- genetic and environmental risk factors, treat- a meaningful way,” Natri says, “that five-year
ing projects in which autistic and non-autistic ments and interventions. And according to plan that the Lancet commission proposed
240 | Nature | Vol 617 | 11 May 2023
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would probably look very different.” communication methods may just not work.” says psychologist Simon Baron-Cohen at the
Tony Charman, a developmental and clini- A further disagreement has fractured the University of Cambridge, UK.
cal psychologist at King’s College London and autism community. Late last year, Singer In September 2021, he and his colleagues
co-chair of the commission, agrees that the co-authored a commentary saying that calls paused the Spectrum 10K study, a massive
report fell short in not including more autistic for autism researchers to be more careful project aiming to understand the genetics of
perspectives. “When I look back and read what about the language they use was ‘censorship’18. autism and co-occurring conditions. Critics
we wrote, quite a lot of the research recommen- The piece cautioned that the concerns raised argued that the study had commenced with-
dations are coming from the dominant — but by self-advocates will push early-career inves- out meaningful consultation of autistic people
not the only — position within the group,” he tigators out of the field. “They may move on to and that the data it collects could be misused.
says. “There is a piece missing there.” study other disorders,” says Singer. “There is a The team has now launched a thorough con-
The commission also adopted the term real threat to research.” sultation, to be finished later this month, that
‘profound autism’. This drew pushback from will probably alter the project’s nature and pro-
autistic researchers and advocates15, and from tocols, Baron-Cohen says. “We’re in listening
organizations, such as GATFAR16, who saw the mode at this point.”
THE BEST WAY TO
label as arbitrary and scientifically inaccurate. Autism research funders in Australia have,
They argued that it unnecessarily splits the for some time now, been allocating more
GET IT RIGHT IS
autistic community, undoing a decision in grants that reflect autistic priorities19. Other
2013 to merge a wide range of conditions, institutions, such as the Interagency Autism
including Asperger’s syndrome, into one
diagnosis.
“It’s interesting that it has created such a
TO LISTEN TO US.” Coordinating Committee, a US federal advi-
sory panel, have followed suit: its 2021–22 stra-
tegic plan for autism research called for more
furore,” says clinical psychologist Catherine The article generated sharp criticism from funding on well-being and inclusion.
Lord at the University of California, Los Ange- both autistic and non-autistic researchers. In 2020, the International Society for Autism
les, who co-chaired the Lancet commission, “That’s a wild claim,” says Bottema-Beutel. Research created a committee of autistic
adding that the report intended to call more “It expresses a level of fragility that I think is researchers — including Abubakare, Kapp and
attention “to people who are often forgotten”. inappropriate for a community of researchers.” Raymaker — to foster collaborations with their
Indeed, the proportion of autism studies Botha agrees. “It’s laughable to pretend that non-autistic peers and offer mentorships to
with participants who would fit the commis- autistic people have institutional and systemic young autistic trainees starting to navigate
sion’s definition of ‘profoundly autistic’ has power to steer autism research when tradition- autism research.
dramatically decreased over time17 — partly, ally we’ve been kept out of it.” All these efforts fuel the hope that momen-
some argue, because of the fusing of autism It’s hard to say how influential the Lancet tum to include autistic perspectives in autism
diagnoses. report, or the recommendation to use ‘pro- science will continue to grow.
Alison Singer, a co-author of the Lancet found autism’, will be, several sources told The only way forward, says Kripke-Ludwig,
report and president of the Autism Science Nature. But the intense divisions the report is to make room for more autistic people in
Foundation, a New York City-based organi- has generated mask some crucial progress academia — even if discomfort ensues. “I am
zation that funds autism studies, says that over the past few years. not a broken version of normal,” she wrote to
the term is necessary. “You have people with For some, the debate has served as a Nature. “I am autistic, disabled and fabulous.
autism who are so high-functioning that they wake-up call. “It’s a kind of revolution, I think,” Get used to it.”
graduate from Harvard Law School. And then
you have people like my daughter”, who has Emiliano Rodríguez Mega is a journalist in
severe intellectual disability. “For me, the Mexico City.
solution is we have to return to bifurcating
1. Lord, C. et al. Lancet 399, 271–334 (2022).
the diagnosis,” she says.
2. Benítez-Burraco, A., Lattanzi, W. & Murphy E. Front.
Many autistic people see that as a step back Neurosci. 10, 373 (2016).
to labels that they have rejected. “I am pro- 3. Tomasello, M., Carpenter, M., Call, J., Behne, T. & Moll, H.
Behav. Brain Sci. 28, 675–691 (2005).
foundly gifted, not profoundly low-function-
4. Hirvikoski, T. et al. Br. J. Psychiatry 208, 232–238 (2016).
ing,” writes Payam, a non-speaking autistic 5. Botha, M. & Frost, D. M. Soc. Ment. Health. 10, 20–34
advocate who is based in Atlanta, Georgia. (2020).
6. Leaf, J. B. et al. J. Autism Dev. Disor. 52, 2838–2853 (2022).
Payam is not an exception, says his mother, 7. Kupferstein, H. Adv. Autism 4, 19–29 (2018).
Parisa Khosravi. “We need to presume com- 8. Botha, M. & Cage, E. Front. Psychol. 13, 105089 (2022).
petence and listen to our non-speakers,” she 9. Whitehouse, A. et al. Interventions for Children on the
Autism Spectrum: A synthesis of research evidence
explains, “rather than assume intellectual (AutismCRC, 2020).
disability.” 10. Sandbank, M. et al. Psychol. Bull. 146, 1–29. (2020).
Many other autistic people who are 11. Bottema-Beutel, K. et al. J. Child Psychol. Psychiatry 62,
5–15 (2021).
non-speaking or have intellectual disabilities 12. Bottema-Beutel, K. & Crowley, S. Front. Psychol. 12,
have found ways to speak up for themselves, 676303 (2021).
says Zoe Gross, director of advocacy for the 13. Bottema-Beutel, K., Crowley, S., Sandbank, M. &
Woynaroski, T. G. Autism 25, 322–335 (2021).
Autistic Self Advocacy Network in Washing- 14. Roche, L., Adams, D. & Clark, M. Autism 25, 336–348
IU BLOOMINGTON
ton DC. “It is completely inaccurate to say that (2021).
as a group, autistic people with intellectual 15. Kapp, S. K. Educ. Sci. 13, 106 (2023).
16. Pukki, H. et al. Autism Adulthood 4, 93–101 (2022).
disabilities, or nonspeaking autistic people, 17. Stedman, A., Taylor, B., Erard, M., Peura, C. & Siegel, M.
can’t advocate for themselves,” she wrote in an J. Autism Dev. Disord. 49, 1378–1390 (2019).
e-mail. “Not all autistic people have access to a Tobi Abubakare says that the research 18. Singer, A., Lutz, A., Escher, J. & Halladay, A. Autism Res.
16, 497–501 (2022).
communication method that works for them, agenda can be hostile to autistic people. 19. den Houting, J. & Pellicano, E. J. Autism Dev. Disord. 49,
and for some people, the currently available 4400–4408 (2019).
Nature | Vol 617 | 11 May 2023 | 241
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