Profiting from Misery: When Autism Researchers Disregard Harms

Attention to adverse outcomes was absent in almost all studies and inadequate in the remaining few: 139 (93%) did not even mention or allude to this possibility, 11 (7%) had cursory statements, and none indicated that adverse events were monitored, much less how. Scrutiny of the poorly reported reasons for participant withdrawal and of effect sizes for reported outcomes yielded evidence that harms had occurred, yet were never interpreted as such.
Bottema-Beutel et al. follow Rodgers et al. (2020), whose systematic review of early intensive applied behavior analysis (ABAUltimately behaviorism provides a simplistic lens that can’t see beyond itself.Why is the doctrine of behaviorism still being used, at all?How can ABA be the gold-standard for autism when it... More)-based autismAutistic ways of being are human neurological variants that can not be understood without the social model of disability.If you are wondering whether you are Autistic, spend time amongst Autistic people, online and offline. If... More interventions also found a pervasive failure to consider harms. Nowhere in this highly influential literature was there any reported effort to monitor or collect data on adverse outcomes. Study protocols, where plans to assess adverse events should prospectively be specified, were unavailable. Reported long-term outcomes, crucial for understanding harms, were lacking for early autism interventions claimed to have lifelong effects. What harms there may have been across any timescale thus could not be determined. Instead, Rodgers et al. found poor quality studies at high risk of bias, leaving ignored ergo unknown harms balanced against uncertain and inconclusive evidence for benefits. Such “preventable uninformativeness” due to poor standards in intervention research has been flagged as a violation of research ethics, entailing de facto harms for study participants and the studied population (Zarin et al., 2019). In this way, the widespread promotion of early intensive autism interventions, based on the biased deployment of a literature uninformative about their benefits versus harms, has been and continues to be inherently harmful to autistics.

Failures in addressing harms have proliferated across autism research, Bottema-Beutel et al. suggest, for reasons such as the embrace of low standard by journals, and the omnipresence of unchecked conflicts of interest (Bottema-Beutel et al., 2020b). Disregard of harms has in turn wrongly been interpreted as evidence of no harms, with consequences rippling out to other areas (e.g. early detection and screening), distorting research and practice. Despite a large literature spanning decades, accumulated knowledge about potential or actual harms to autistics from interventions that may occupy many of their waking hours, for years, is negligible. The foundations for adequate systems or methods for monitoring harms beyond the scope of intervention studies are thus lacking. Indeed, conflicts of interest entangled with low standards in research and practice would undermine future efforts to accurately capture harms via routinely collected data. Nothing justifies these multiple failures on the part of autism researchers.
We welcome the attention to harms shown by Bottema-Beutel et al. and Rodgers et al., as well as by Benevides et al. (2020), who include, among their top 5 autism research priorities, a question about the harms of behavioral and other interventions. But this attention is as rare as it is terribly overdue. 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. Autism researchers should be deeply troubled by this comprehensive failure to apply fundamental standards. 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.

Source: When autism researchers disregard harms: A commentary – Michelle Dawson, Sue Fletcher-Watson, 2021

Autistic people have difficulty accessing safety. Our neurology is tuned to high alert. So it’s especially cruel that we’re subjected to such harm. Autism therapies ignore everything we know about autism. The harm done is immense.

Why is autism research such a harm factory? In large part because private equityEquityA commitment to action: the process of redistributing access and opportunity to be fair and just.A way of being: the state of being free of bias, discrimination, and identity-predictable outcomes... More and big autism charities distort everything.

This study is the ﬁrst systematic investigation into COIs in autism early intervention research. We found that COIs exist in a majority of studies, but are widely unreported.

Source: Research Review: Conflicts of Interest (COIs) in autism early intervention research – a meta‐analysis of COI influences on intervention effects

Via Ann Memmott, who breaks it down better than I ever could in this Twitter thread:

This is such an important piece of research by @autismcrisis @SueReviews
I want to put some of its findings on this thread.
How most autism researchers, in the studies here, haven’t even thought about whether they’re damaging the children & young people/
https://journals.sagepub.com/doi/10.1177/13623613211031403
@KristenBott & team investigated this in 150 bits of research. 139 (93%) did not even mention harms as a possibility, 11 (7%) had vague summaries, & none wrote that possible harm was even monitored/
Rodgers & team looked at ABA (applied behavior analysis research. Nowhere in this highly influential literature was there any reported effort to monitor or collect data on possible harm to the children.
None at all.
Nothing./
These poor standards in research has been flagged as a violation of research ethics.
Promotion of “early intensive” interventions (EIBI) when clueless about possible harms, “…has been and continues to be inherently harmful to autistics”/
This is a snip from the paper which talks about the horrifying things done to autistic children and young people, without ever once checking whether it’s actually done harm.
Yes, now, 2021.
Yes, ‘therapies’ paid for with public money.
Goodness me/

In choosing to believe that ‘success’ looks like a silent, still autistic child, the teams gave themselves no chance at all to assess for harm. Or to even realise that such a situation is, or could be, harmful for a child with different neurology & very real needs & emotions/
“Nothing justifies these multiple failures on the part of autism researchers”.
I agree entirely.
Not a career path.
Not a pretty award.
Not cash in the bank.
These are children whose lives have been treated as an cost-free experiment, & the damage could be lifelong.
What I find particularly shocking is that I read so many papers that have the gall to write “Yeah, we complied with Ethics and the Helsinki stuff, honest gov”.
Like hell they did.
Didn’t even think about it from start to finish.
An industry backed by a couple of rogue charity leaders who threaten researchers with, “You’ll never work again unless you do exactly as you’re told”.
Where the end result is whatever the ‘stakeholders’ want delivered (including those profiting from this misery)
“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.”
Amen to that.

Originally tweeted by Ann Memmott PGC🌈 (@AnnMemmott) on July 28, 2021.

Follow the authors of ” When autism researchers disregard harms: A commentary” on Twitter:

See also Memmott’s Vital Research Links for a list of good research.