Neighborhood E-newsletter: Researchers and advocates debate utilized habits evaluation | Spectrum
Illustration by Laurène Boglio
Hello and welcome to the community newsletter! I am your host, Chelsey B. Coombs, the engagement editor of Spectrum.
As a reminder, Spectrum will be hosting a Twitter chat this week during the Society for Neuroscience conference. Join us on Wednesday, November 10th, 12:30 PM to 1:30 PM EST to chat with your fellow researchers and our reporters over conference posters, keynotes, and presentations via #SpectrumChat. We are starting the discussion from the Twitter account @Spectrum.
Several autism researchers commented online this week on a statement from the Autism Science Foundation (ASF) expressing “strong support” for applied behavior analysis (ABA).
In recognition of the debate about therapies based on Applied Behavior Analysis (ABA) based on the autism community, ASF has issued a position statement confirming that ABA is safe and effective for people with autism.
Read our full statement here: https://t.co/9z0TyQ8CCn pic.twitter.com/5YL4eaUBZM
– ASF (@AutismScienceFd) October 28, 2021
As our scientific understanding of autism changed, so did the techniques used in ABA. It is a mistake to discard an entire canon of techniques and principles based on criticism of previous practices.
– ASF (@AutismScienceFd) October 28, 2021
“We have come to the conclusion that ABA therapy, when done ethically, is beneficial for people with autism,” wrote ASF.
The underlying principle of ABA is to teach autistic people skills that they may find challenging. But it has long been criticized by autistic adults who went through therapy as children, saying they think it is harmful.
Although some ABA therapists have used punishment in the past, today ABA encourages “the use of positive rather than negative reinforcement,” the ASF statement said. And ABA techniques vary widely and have changed dramatically since they were first developed in the 1960s, ASF wrote in a follow-up tweet.
Laura Crane, Associate Professor of Psychology and Human Development at University College London and Assistant Director of the UK Center for Autism and Education Research, tweeted a nuanced thread about the ASF’s explanation.
“We have come to the conclusion that ABA therapy, when performed ethically, is beneficial.”
Real question: what is considered ethical / not in this context? I’m afraid this is still wide open for interpretation … ???? https://t.co/8xcvE9dQl5
– Laura Crane (@LauraMayCrane) November 2, 2021
Example: “We are not trying to fundamentally change who they are, but they want to be accepted by their colleagues and we can help with that.” Social skills training can have good and ostensibly ethical intentions, but can lead to camouflages that can have negative consequences.
– Laura Crane (@LauraMayCrane) November 2, 2021
It is difficult to say what is ethical or unethical in this context, wrote Crane using the example of the social skills training in ABA, which can potentially lead to a disguise of autism characteristics. Research shows that camouflage has negative effects on autistic people, she writes, and that “professionals need to think deeply about ethics related to ABA and other interventions.”
I wish this article talked about how things have changed (and I admit they did to some extent), but it was also recognized that there were still some very legitimate ethical concerns about ABA and other autism interventions out there that professionals need to reflect deeply.
– Laura Crane (@LauraMayCrane) November 2, 2021
Kristen Bottema-Beutel, Associate Professor of Teaching, Curriculum, and Society at Boston College, Massachusetts, told Crane that some of the research cited by ASF in its statement as evidence of therapy effectiveness “did not support ABA.”
There are inexplicable claims everywhere – for example, they say “These changes result in significant quality of life gains, such as developing social connections and friendships” and citing this article that did not measure quality of life and did not support ABA https://t.co / XPPjLDM9tz
– Kristen Bottema pouch (@KristenBott) November 3, 2021
Kristie Patten, vice dean of academic affairs and associate professor of occupational therapy at New York University in New York City, tweeted that “whoever determines what is ethical” may not include the autistic people in ABA therapy.
and the main problem with that statement is who to determine what is ethical …. I think it’s not the autistic person who underwent the intervention … just a guess …
– Kristie Patten (@ Kpk3P) November 3, 2021
Richard Woods, a PhD student in the School of Law and Social Sciences at London South Bank University, asked if the ARSP Scientific Advisory Board had been consulted on the statement.
Why don’t we ask the members of his Scientific Advisory Board what they recommended?
Conveniently, maybe @DSMandell (whom you know through @journalautism) what they recommended?
– Richard Woods (@Richard_Autism) November 3, 2021
David Mandell, a professor of psychiatry at the University of Pennsylvania at Philadelphia, editor-in-chief of Autism and a member of the Scientific Advisory Board of ARSP, responded that the Foundation’s position on ABA “is not an issue we have discussed as a group” and that the members would likely have a wide range of opinions about the therapy.
I can imagine that the SAB’s views on ABA differ. This is not an issue that we discussed as a group.
– David Mandell (@DSMandell) November 3, 2021
In response to the tweets, Alison Singer, president of the Autism Science Foundation, Spectrum made the following statement.
“We stand behind this statement. The science is clear that ABA is safe and effective. We wrote this statement because we were becoming increasingly alarmed that unfounded criticism from some members of the neurodiversity community and a handful of autism scientists focusing on the highly functional end of autism could deter families from this evidence-based treatment. ABA isn’t for everyone, but it can be life changing for some.
“ABA” has been used as a monolithic term to refer to some type of behavioral support, although ABA is actually an extremely diverse set of principles that drive a wide range of interventions. New literature written in collaboration with autistic adults has shown that the practice of ABA has evolved, improved, and addressed the needs of the autism community over the years. “
Register for the November 29th Spectrum webinar featuring Ari Ne’eman, a PhD student in health policy at Harvard University and president and co-founder of the Autistic Self Advocacy Network. Ne’eman will discuss ways to assess clinical progress in people with autism that do not encourage them to “pass” as non-autistic.
You can now watch our October 28 webinar with Zachary J. Williams, a medical and graduate student at Vanderbilt University in Nashville, Tennessee, who spoke about measuring alexithymia in autistic people.
That’s it for this week’s community newsletter! If you have any suggestions for interesting social contributions in the field of autism research, feel free to email me at chelsey@spectrumnews.org. We meet next week!
