Hello, and welcome to this week’s Community Newsletter! I’m your host, Chelsey B. Coombs, Spectrum’s engagement editor.
The first paper to catch Twitter’s attention extols a transdiagnostic approach for neurodevelopmental conditions, such as autism and attention deficit hyperactivity disorder.
Clinicians typically diagnose these conditions using criteria in the 5th edition of the Diagnostic and Statistical Manual, which classifies people into discrete categories. But these “arbitrary thresholds” don’t account for how varied neurodevelopmental traits can be, the authors say, nor do they capture the needs of people with neurodevelopmental conditions. The current criteria can also lead to missed diagnoses and support opportunities — especially for those who experience racial, ethnic and socioeconomic bias, who are also often excluded from research.
The transdiagnostic approach “softens adherence to the dominant diagnostic nosology or replaces it with a new framework characterizing disorders in terms of dimensions rather than discrete categories.” The paper offers suggestions on how to improve study design and recruitment using a transdiagnostic approach.
Tony Charman, professor of clinical child psychology at King’s College London in the United Kingdom, wrote that the paper was a “nice overview” of a problem many researchers encounter.
Nice overview by @DuncanAstle and CBU colleagues on issue in #autism and neurodevelopmental disorder research we all encounter (was going to say “struggle with…????”) Annual Research Review: The transdiagnostic revolution in neurodevelopmental disorders https://t.co/inlB0sHGf7
— Tony Charman (@TonyASDorAFC) July 25, 2021
Naomi Fisher, a clinical psychologist in Paris, France, tweeted, “This certainly reflects my experience working in a ND clinic.”
‘An overreliance on ill-fitting diagnostic criteria is impeding progress towards identifying the barriers that children encounter, understanding underpinning mechanisms and finding the best route to supporting them.’ This certainly reflects my experience working in a ND clinic. https://t.co/A36EqCXroO
— Naomi Fisher (@naomicfisher) July 28, 2021
Next up, a commentary in Autism sparked a lot of conversation on social media this week. It took on the harms autistic people experience when researchers studying nondrug interventions, such as applied behavior analysis (ABA), do not monitor or consider the possibility of adverse outcomes.
Michelle Dawson, autism researcher at Hôpital Rivière-des-Prairies in Montreal, Canada, and Sue Fletcher-Watson, professor of developmental psychology and director of the Salvesen Mindroom Research Centre at the University of Edinburgh in Scotland, wrote the commentary in response to a study by Kristen Bottema-Beutel, associate professor at Boston College in Massachusetts, and colleagues.
Of 150 early-intervention study designs Bottema-Beutel and her colleagues reviewed, 93 percent did not mention or allude to the possibility of adverse events; the remaining 7 percent had some mention of potential harms but did not say if the researchers monitored for them.
“unacceptable biases … have led to autistics being considered unharmable, such that anything can be done to them”
Once again honoured to join @autismcrisis in this commentary on excellent work by @KristenBott @MichealSandbank @ShanCLaPoint & Woynaroskihttps://t.co/f3cGAkUGJx
— Sue Fletcher-Watson (@SueReviews) July 22, 2021
Although ABA is one of the most widely used therapies for autistic people, many autistic adults who had ABA as children have criticized it, saying it harmed them by forcing them to suppress traits such as ‘stimming’ so they could appear more neurotypical.
Echoing that sentiment, Dawson and Fletcher-Watson argue in their commentary that because ABA-based interventions often “aim to reduce or remove any sign of autism,” the resulting loss of autistic traits is seen by many researchers to be beneficial, not harmful.
“We must recognize, understand, take responsibility for, and reduce the unacceptable biases that have led to autistics being considered unharmable, such that anything can be done to them,” they write.
Bottema-Beutel praised the commentary for being “incisive” and “astute.”
Incisive, astute commentary on lack of harms reporting in autism research, by @autismcrisis and @SueReviews “We are left with an influential literature lacking fair tests of the benefits versus harms of autism interventions that have been widely implemented for decades.” https://t.co/WJlnsWjVYf
— Dr. Kristen Bottema-Beutel (@KristenBott) July 22, 2021
Noah Sasson, associate professor of behavioral and brain sciences at the University of Texas at Dallas, tweeted that it was a “must read.”
“Autism researchers should be deeply troubled by this comprehensive failure to apply fundamental standards” Must read by @autismcrisis and @SueReviews https://t.co/MMm8TfXHQD
— Noah Sasson (@Noahsasson) July 22, 2021
Rua M. Williams, assistant professor in computer graphics and technology at Purdue University in Lafayette, Indiana, who researches interactions between technology design, computing research practices and disability justice, wrote, “Clinical behavioral studies should be required to provide data and analysis of participant attrition.”
Clinical behavioral studies should be requires to provide data and analysis of participant attrition. Many families withdraw their children from clinics and the researchers conducting studies there do not investigate why.https://t.co/M1EnWCAEPD
— Rua M. Williams (@StarFeuri) July 22, 2021
Finally, don’t forget to register for our 31 August webinar with Laurent Mottron, professor of psychiatry at the University of Montreal in Canada, who plans to discuss “a radical change in our autism research strategy.”
That’s it for this week’s Community Newsletter from Spectrum! If you have any suggestions for interesting social posts you saw in the autism research sphere, feel free to send an email to me at [email protected]. See you next week!
