Autism researchers are making myriad moves to involve people with autism in their research. Some invite people on the spectrum to tour their labs or include them in the grant-writing process. But Sue Fletcher-Watson, Chancellor’s Fellow at the University of Edinburgh in the United Kingdom, recommends another approach: finding an ‘autistic mentor.’
Fletcher-Watson teamed up with Kabie, an autism self-advocate, as a way of involving an individual with autism in every step of the scientific process.
“The idea is that, over time, [Kabie] will become intimately acquainted with my work, all my projects, my working style and the constraints that challenge me,” Fletcher-Watson writes in a blog post on the University of Edinburgh’s Developmental Autism Research Technology site. “I hope she will have a really pervasive influence over what I do.”
The partnership is a two-way street. Kabie says learning about Fletcher-Watson’s obligations and constraints has given her a new perspective on research.
“Being able to see everything enables me to create a clearer picture, an understanding of how things fit together,” she writes. “Many autistic people are turned off by research, their only experiences being when used as research subjects … Maybe if there was more understanding all round this would improve.”
Developmental Autism Research Technology / 13 Oct 2016
A group of British schoolgirls on the spectrum has published a book about their experiences entitled “M in the Middle: Secret Crushes, Mega-Colossal Anxiety and the People’s Republic of Autism.” The teenage authors hope to raise awareness that girls can have autism, too.
“If society just realized the very simple fact that girls can have autism as well as boys, then the life of girls with autism would instantly be so much better,” 14-year-old Francesca Warren, a student at Limpsfield Grange School and one of the book’s authors, told The Guardian. “We wouldn’t be so scared of being labelled as weird, abnormal and strange.”
Roughly five boys have an autism diagnosis for every girl who does. Some researchers posit that girls have a factor that staves off the condition. Others say the tests used to spot autism are better suited for boys. But the girls of Limpsfield Grange say they constantly mask their condition in order to fit in.
“Having to pretend to be someone else is debilitating and humiliating,” Warren told The Guardian. “And it doesn’t even work: People can get annoyed with you even when you mask [because they sense your inauthenticity].”
The Guardian / 21 Oct 2016
In the world of ‘publish or perish,’ it seems some researchers will do anything to get their names on notable papers. A post on Retraction Watch earlier this week spotlights a black market for authorship in which scientists offer cash to land their names on studies to which they never contributed.
“Authorship on manuscripts in revision is offered to those with the money to pay,” write Peggy Mason, professor of neurobiology at the University of Chicago, and Maria Sol Bernardez Sarria, a graduate student at Yale University. “The cost goes up with the prestige of the journal and authorship position.”
Mason and Bernardez Sarria started scanning studies for signs of bought bylines back in 2013. Science had published an investigative story about researchers — or agents working on their behalf — selling their spots on a paper’s list of authors during the review process.
Mason and Bernardez Sarria were serving on an ethics committee for the Society for Neuroscience at the time, and they worried about this “new method of fraud,” they write in Retraction Watch. So they decided to see whether they could spot signs that a researcher bought his or her way onto a paper. In their post, they outline seven such signs, such as a lack of shared papers between study authors prior to the paper in question.
Retraction Watch / 24 Oct 2016
The European Medicines Agency — a regulatory body akin to the U.S. Food and Drug Administration — plans to publicly release all clinical trial data for drugs under study. The agency announced the “unprecedented” move last week, citing a need for transparency in the drug-approval process.
“Transparency is an essential component in clinical research,” Vytenis Andriukaitis, European Commissioner for Health and Food Safety, said in a statement. The findings from clinical trials, “whether positive or negative, should be made publicly available,” he added.
By sharing trial data, the agency hopes to help researchers avoid duplicating efforts and strengthen public trust in the system for validating drugs. Last month, the National Institutes of Health announced new rules requiring researchers to share the results of their clinical trials or face fines of up to $10,000. But whether researchers comply with those rules depends on how strictly they’re enforced.
European Medicines Agency / 20 Oct 2016
Joshua Gordon, the new director of the National Institute of Mental Health, is facing a challenge: trying to use the agency’s limited budget to meet both short- and long-term goals in neuroscience. His two predecessors — Thomas Insel and Steven Hyman — invested heavily in basic neuroscience. They reasoned that understanding the brain would lead to better treatments for neuropsychiatric conditions. But some people are calling for a better balance between this long-term goal and efforts that can help people now.
Gordon responded to these concerns in Q&As with Science and Nature this week.
“They are arguing that the balance is off. And I think that’s an argument we have to pay attention to,” he told Science. “Where there are opportunities in psychiatry for short-term effects, we are going to try to take advantage of them. Absolutely. We’d be mad not to. We know so little about the brain, we have so few truly novel treatments in the pipeline that I’m all ears. But I’m not hearing a lot of people say to me: ‘We have these short-term gains that we can make in this area and that area.’”
One area of focus under Gordon’s watch is brain circuitry. Understanding how the brain is wired could lead to treatments in a decade, he says.
“We don’t yet know exactly which circuits we would want to modify to treat psychiatric disorders in humans. But now is the time to start thinking about which tools we are going to need to make this translational step possible, and invest in them,” he told Nature.
Science / 25 Oct 2016
Nature / 26 Oct 2016
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