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- Is Your Training from the 1940s?
- Are You Really Evidence-Based?
- Are You Disregarding Harm and Profiting From Our Misery?
- Do You Dishonour Autistic People?
- Are You Qualified?: Don’t Confuse Your Lecture with Our Life Experience
- Are You Feeding White Supremacist Ideology?
- What Instead? Participatory, Emancipatory, Activist Research
Is Your Training from the 1940s?
So, how on earth have we ended up with this many myths continuing painfully from one decade to the next?
I’m afraid the answer is that too much of the training has been stuck in the 1940s. Too much is done by non-autistic people, often ones who happen to know an autistic person in some way (maybe a relative) but seemingly have never asked them about life. I mean ‘asked’ in any communication sense, not just speech. Over a million autistic people in the UK, and too often, such trainers have none of them as personal friends, none of them as colleagues. Isn’t that odd?
Such trainers pass on the ancient myths, generation after generation. They write them down, put them on Powerpoint presentations, and deliver them to you as if they are fact. Research based in part on materials from the 1990s and 1980s, which was based largely on watching groups of profoundly disabledThe label "disabled" means so much to me. It means I have community. It means I have rights. It means I can be proud. It means I can affirm myself... More young men in a careThe activities that constitute care are crucial for human life. We defined care in this way: Care is "a species activity that includes everything that we do to maintain, continue,... More home, as far back as the 1940s. As far removed from a balanced view of autism as one can get, in fact.
Worse still, they often expect you to pay for this. It might look slick, with excellent graphics, and the trainer might look like they could pose for a fashion magazine . But…are you really wanting 1940s material?Ann’s Autism Blog: Autism. Is your training from the 1940s?
Are You Really Evidence-Based?
And if it turns out that, contrary to widespread assumptions, behavior modification techniques aren’t supported by solid data even when used with autistic kids, why would we persist in manipulating anyone with positive reinforcement? A rigorous new meta-analysis utterly debunks the claim that 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) therapy is the only intervention for children with autism that’s “evidence-basedEvidence-based practice is the process of identifying the best available evidence to make decisions about practices that should be deployed to support individuals in a given population (McKibbon, 1998, see Vivanti,... More.” In fact, it raises serious questions about whether ABA merits that description at all.
You might assume that those who use the phrase “evidence-based practice” (EBP) are offering a testable claim, asserting that the practices in question are supported by good data. In reality, the phrase is more of an all-purpose honorific, wielded to silence dissent, intimidate critics, and imply that anyone who criticizes what they’re doing is rejecting science itself. It’s reminiscent of the way a religious leader might declare that what we’ve been told to do is “God’s will”: End of discussion.Autism and Behaviorism – Alfie Kohn
I think we’re just going to have to let the term “evidence-based” go. There seems to be an inverse relationship between the extent to which a practice is described as evidence-based, and the quality of evidence supporting its use.Dr. Kristen Bottema-Beutel on Twitter
It’s now often just marketing jargon. Practices that are acceptedAcceptance means training mental health service providers to look at autism and other disabilities as a part of a person's identity, rather than a problem that needs to be fixed. Acceptance... More as evidence-based generally don’t have to try to sell themselves as evidence-based.
I’d be curious how many things labeled “evidence-based” are for profit.Noah Sasson on Twitter
Are You Disregarding Harm and Profiting From Our Misery?
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.
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/
@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.
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.
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:
Do You Dishonour Autistic People?
Ethics is a vital part of research. It is about ensuring we do no harm to those we serve.
As researchers, teams are there to serve the autistic communitiesWhat I have always been hoping to accomplish is the creation of community.Community is magic. Community is power. Community is resistance.Disability Visibility: First-Person Stories from the Twenty-First Century https://www.amazon.com/Disability-Visibility-First-Person-Stories-Twenty-First-ebook/dp/B082ZQBL98/ https://www.amazon.com/Disability-Visibility-Adapted-Young-Adults-ebook/dp/B08VFT4R9T/... More. Not to hurt and insult them.
Autistic people are not there to serve researchers as a convenient sample or a way to advance their careers.
I’m part of these communities. As a proud parent of a fantastic autistic son. As an autistic person myself. As a researcher. As a consultant and lecturer in this field, including to the NHS in various roles.
I am so sad to see some research teams behaving in these frankly callous ways. I wish the example above was rare. It is not.
We are not “ASDAutistic 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 cases”.
We are worth every bit as much as every other human on this planet. Our way of interacting, our emerging cultures and ways of being, are worth their place.
Those that need support have been asking for things that actually matter to us. There is more research than you could shake a journal at, on this subject. Instead, we get paper after paper describing us like we’re some form of disease to be eradicated.
I won’t despair of research, as I see so many good people emerging. People who put us front and centre of research into our own lives. People who treat us as valued colleagues. As equals, not as laboratory specimens. People who are our allies. People who are autistic and working at the top levels of new thinking, new theories, new understandings. I am honoured to work with several such teams.
I would very much like some researchers to stop hiding behind one another, and behind dehumanising words. To have the courage to re-evaluate their thinking and their beliefs. To have the curiosity to read those new narrativesWhen we successfully reframe public discourse, we change the way the public sees the world. We change what counts as common sense. Because language activates frames, new language is required... More, to meet autistic teams and really collaborate, really understand.
If you cannot gaze upon us and see our worth, our love, our caringThe activities that constitute care are crucial for human life. We defined care in this way: Care is "a species activity that includes everything that we do to maintain, continue,... More, our whole humanity, this is not the field you should be in.
This is our future. Our lives. Our present. Our history. Our communityWhat I have always been hoping to accomplish is the creation of community.Community is magic. Community is power. Community is resistance.Disability Visibility: First-Person Stories from the Twenty-First Century https://www.amazon.com/Disability-Visibility-First-Person-Stories-Twenty-First-ebook/dp/B082ZQBL98/ https://www.amazon.com/Disability-Visibility-Adapted-Young-Adults-ebook/dp/B08VFT4R9T/... More.
You are not called to erase us, as researchers.Ann’s Autism Blog: Research that dishonours and harms autistic people
Are You Qualified?: Don’t Confuse Your Lecture with Our Life Experience
Are You Feeding White Supremacist Ideology?
It takes some mental acrobatics to be an intellectual racist in light of the scientific information we have today, but those who want to do it, will. Racists will find validation wherever they can, even if it means working a little harder than usual. And this is the reason that good scientists who do reliable research, ones who are also well-intentioned and antiracist, like Cavalli-Sforza, can’t afford to be cavalier or leave too much room for misinterpretation. There’s an uncertain space between recognizing that there is a gap of knowledge and actually filling that gap. It’s a place where speculation thrives, where the racists reside. Racists adopted the same concepts as good scientists—and the same language as antiracists—to assert that, if certain groups can show some average differencesOur friends and allies at Randimals have a saying, What makes us different, makes all the difference in the world.Randimals We agree. Randimals are made up of two different animals... More to other groups then, by that logic, certain groups might be better on average than others at certain things. When Steve Sailer and his followers talk about “human biodiversity,” this is what they mean. This wolf in sheep’s clothing is twenty-first-century scientific racism.Superior: The Return of Race Science
Science is just a pawn in the bloody game.Superior: The Return of Race Science
What Instead? Participatory, Emancipatory, Activist Research
Instead of all the above, get participatory, emancipatory, and activist.