By Rachel Zamzow
A freelance science writer in the United States, he has published articles in magazines such as The New York Times, Scientific American, and New Scientist, and has also written news reports for Spectrum.
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In scientific research, the stigma of autism is visible
Etiology, classification, therapy, social support, policy advocacy, autism-related research projects, complex and abnormal, attracted countless scientific researchers and social workers from all over the world to participate in it.
Can they all treat autistic people without prejudice? Do they really understand what autism needs?
In 2005, a paper comparing children with autism to apes came out.
In 2016, another article said that autistic language disorder stems from the failure of human brain evolution...
These descriptions made Monique Porta sick to his stomach.
Porta discovered these articles years ago when she was preparing her master's thesis at the University of Surrey in the UK to study "why mental health problems in autistic groups are high".
Porta herself is also an autistic and was diagnosed at the age of 19.
After digging deeper, Porta realized that the insults suffered by autistic people went far beyond that: some reports that people with autism could not have a moral self, or that they were inherently selfish and self-centered; some described them as a social burden; others speculated that people with moderate to severe autism could not experience a "good life," including intimacy; most of these articles were published in the last decade.
"Imagine waking up one morning and reading a book devoted to why you and people like you can't be seen as real people," Porta said. ”
These ignorant remarks, far from discouraging Porta, strengthened her determination to join the academic discussion and trigger change.
Today, Porta is an associate lecturer in psychology at the University of Surrey, researching the impact of stigma and discrimination on people with autism. This may seem like a moral question, but it's far from it.
People with autism often run the risk of mental health problems and suicide — and external biases have a huge impact; after the coronavirus outbreak, some doctors in the UK have decided that all adults with autism agree to "not resuscitate" without the consent of patients or their families; Porta said, if the scientific literature continues to treat autistic people as inferior humans, "the more vulnerable it is to abuse people." Even outside violence against autistic people will become legalized. ”
Translator's Note: Refusal of cardiopulmonary resuscitation (abbreviated as DNR), also translated as renunciation of cardiopulmonary resuscitation, waiver of first aid consent, also known as refusal of emergency treatment, is a legal document that patients pre-sign during normal times or in the hospital indicating that they are unwilling to undergo CPR or advanced cardiac life-saving surgery to prolong their lives when they face cardiac arrest or respiratory arrest.
Tempo Grantin, an American animal scientist with autism
Temple Grandin (2010)
More and more autistic people like Porta have become autism researchers.
10 years ago, few researchers would openly admit they had autism, and even fewer would be willing to hire autism scientists.
"We're getting louder these days," said Damian Milton, an autism researcher who chairs the Participatory Autism Research Collective, which has increased the participation of the autistic community in scientific research. ”
They regularly publish papers in top academic journals and serve as editors in at least 4 autism journals, as well as board members and reviewers of multiple journals, form committees of autism researchers, form various academic groups, and are active in various positions in academia.
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When autistic people join the scientific research,
They changed something
As early as the 1940s, people with autism have been involved in many autism projects in a participatory research manner.
Participatory research refers to the fact that when ordinary scholars conduct autism research, they ensure that the research is accurate and does not harm or offend the minority group studied, and at the same time meets the needs of that group. The average researcher will work with certain members of the autistic community.
Participatory research by autistic people has had a huge impact on the research direction of the medical community. In the UK, for example, more than half of all autism research focuses on basic biology.
However, a 2013 study surveyed 125 people with autism, most of whom thought more attention should be paid to public service research, and nearly half called for more research on improving life skills for people with autism.
In 2015, a survey of nearly 300 people with autism in the UK showed that mental health issues were the most pressing research topic.
In a 2018 U.S. study, 485 people with autism and their families said they actually valued health and well-being, the transition to adulthood, and longevity issues more than basic science research.
Stewart said: "For people with autism, the most important issue is actually the improvement of quality of life. ”
Participatory research on autistic people influences the research direction of ordinary researchers, greatly increases the priority of the research field that the autistic community desires, and plays an important role in research.
Participating in research helps to eliminate harmful descriptions of people with autism in the scientific literature. Jac den Houting, a postdoctoral fellow in education at Macquarie University in Sydney, Australia, said: "Countless times, I have read in my papers about how much society has spent on me, how much I have placed on society, how difficult it is for the people around me to get along with, how bad the lives of my parents and siblings are – all these things, and I am very hurt. ”
Participatory research prevents the above situation by requiring scientists to communicate directly with the autistic group studied and to obtain the opinion and approval of the autistic community for the research.
- Ramiro Moyeda -
At the same time, we've also found more benefits to having researchers with autism lead the study.
First, scientists may have a very good relationship with the participants.
Kana Umagami, a graduate student at University College London, is studying the loneliness of adult autistic people because she can empathize and has established friendly relationships with many autistic people, which can dispel misunderstandings that could ruin the entire study.
Second, scientists can analyze the symptoms of autism according to their own experience.
In 2019, Steven Kapp, a lecturer in psychology at the University of Portsmouth in the United Kingdom and also an autistic person, and his colleagues found that autistic self-stimulating behaviors, such as shaking hands, shaking bodies, spinning circles, repeating words, etc., have a soothing effect on many adult autistic people. But the average person is likely to ignore the meaning of these actions.
Third, the experience of autism can also bring a unique perspective to scientific research.
Elliot Keenan is a graduate student in autism psychology at UCLA. In his undergraduate thesis, he studied the link between depression and repetitive thinking and behavior. Because he realized that this kind of rumination seemed to be related to his own depression attack.
Fourth, autism researchers can also change the views of ordinary scientists in some important ways.
Canadian psychiatrist Laurent Mottron, while conducting an autism study, was influenced by Michelle Dawson, an autism researcher on her team.
Most researchers think autism is a problem to be solved, but Dawson doesn't. Mottron has also begun to see autism as a natural variant of humanity rather than "a mistake that should be corrected."
3 Researchers with autism are trustworthy?
Academics with autism often encounter more biases and obstacles in their research projects. They will be questioned for not being self-aware enough to conduct scientific research activities.
In 2010, Remarck, an autistic, was rejected when he applied for funding for his research project. The rationale is that "there is insufficient evidence to show that autistic people's self-assessment reports are valid or trustworthy." ”
Some researchers dismiss autistic scientists as "too autistic" to produce high-quality scientific research; they are often accused of one-sided views, because people tend to think that the authorities are confused and the bystanders are clear.
But every scientist relies on subjective experiences, ideas, and observations. "When a non-autistic researcher conducts a study, they also ask questions based on their own perceptions of autism," Porta said. ”
Some researchers also believe they are "not autistic enough" to truly understand the autistic community and therefore do not value their views; Stephen Shore, assistant clinical professor of special education, said he is often questioned for not having enough autism.
"Because scientists with autism are too different from people with severe autism." Shore said, "Maybe they think I don't throw my hands off enough (a common self-stimulating behavior)?" ”
During a job interview, autism scholar Ma Shen was questioned that she could not be an autistic because she had eye contact with people. Many autism researchers don't heed these comments.
Shore said: "For people who don't believe I'm an autistic, I'll tell them directly, stay with me a little longer, and you'll know." ”
They are slowly deciphering their biases through their own efforts, Porta said: "Every time autism researchers publish a high-quality autism study, the views of the autistic community are more valued or recognized." ”
- David Bonazzi -
At the same time, the autism trait itself will bring more challenges to autism scholars.
For example, feeling overloaded when participating in learning discussions, exhausting them and even inducing panic.
As a result, they may miss out on academic conferences and discussions, important scientific advances, new ideas, and opportunities to communicate with colleagues.
Now, some conference organizers are trying to create a more comfortable meeting atmosphere for attendees with autism.
Sensory complications can also affect daily life and prevent the generation of new ideas. When Shore was teaching, he was very irritated by the students' pre-class conversations, and he would ask them not to talk.
It wasn't until one day, when he suddenly wanted to hear what the students were talking about, that he realized that the students were discussing the material in the class, which had a positive effect on the course, and he became no longer resistant to the students talking before class.
Shore said, "This has improved my teaching style. "There are also autism researchers who are more sensitive to rejection and criticism and have a harder time dealing with relationships. Dan Howetting has been learning over the years how to revisit negative feedback to improve the quality of her work.
However, Porta said that autistic people are likely to face all kinds of rejection throughout their lives, and to some extent, this is also an advantage, because the ability to resist stress will continue to increase. Finally, autistic scientists also have to deal with a lot of work that comes with the research itself.
The academic environment is not only fast-paced, but also highly competitive. Dealing with research, administration, and family life at the same time is a challenge for anyone, and this kind of schedule management is especially difficult for people with autism.
However, some senior autism scientists are also trying to help new autism scientists overcome these challenges.
- David Bonazzi -
Porta has long admired more senior researchers such as Milton and Karp.
Today, many of Porta's inspired students to study psychology also visit her regularly. They told Porta, "I have autism and I want to do these things too, and you showed me that it's possible." ”
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Cover: Dani Pendergast
Original: https://www.spectrumnews.org/features/deep-dive/rethinking-repetitive-behaviors-in-autism/
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