Questions for an Industry: Are You Disregarding Harm and Profiting From Our Misery?

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A lump of clay being pressed beneath two hands

What on earth has been going on, in experimentation on our autistic loved ones?

Who on earth thought we were no more human than a lump of clay?

Ann Memmott PGC🌈 (They/she) on Twitter
Home » 🗂 Facts, Fire, and Feels: Research-Storytelling from the Edges » Questions for an Industry: Are You Disregarding Harm and Profiting From Our Misery?

Is Your Training from the 1940s?

Are you confused, because you attended a lecture reading out the myths from the original 1940s version?  Welcome to this very important update.

The old 1940s version of autism has turned out to be based on very poor evidence, and deserves a decent burial.

What’s it like, trying to grow up in a world that wants to see you as a fault, because that’s what two men said, 80 years ago, after looking at a handful of mostly male, white children with profound support needs?

Autism: Some Vital Research Links

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 disabled young men in a care 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 (ABA) therapy is the only intervention for children with autism that’s “evidence-based.” 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.

Moreover – and it took me awhile to catch on to this – behaviorists often use “EBP” just as a shorthand for the practices they like, in contrast to the (progressive or humanistic) approaches they revile. It doesn’t matter if the evidence is actually weak or ambiguous or even if it points in the other direction. They’ll always come up with some reason to dismiss those inconvenient findings because their method is “evidence-based” by definition. (On social media and elsewhere, you can get a glimpse of how modern behaviorism resembles a religious cult – closer to Scientology than to science – with adherents circling the wagons, trading ad hominem attacks on their critics, and testing out defensive strategies to employ when, for example, people with autism speak out about how ABA has harmed them. Or when scholarship shows just how weak the empirical case for ABA really is.)

Which brings us back to that new research review. The work of eleven authors – including, interestingly, an ABA therapist – representing the University of Texas, Boston College, Vanderbilt, and Mount Holyoke, it was published in January 2020 in Psychological Bulletin (PB), a prestigious social science journal that specializes in lengthy integrative research reviews. The article is not a polemic. It does not consider, and appears not even to be informed by, any of the broader objections to ABA that are raised by autistic people or that I’ve raised here. It confines itself to describing peer-reviewed research. The authors cast a wide net, looking for every English-language study in the last half-century that compared an intervention group with a control group in treating children up to age 8 who had been diagnosed with Autism Spectrum Disorder. This yielded 1,615 separate results from 150 reports representing 6,240 participants.

The most striking finding in this research review is how few high-quality assessments of “the primary approach used in clinical practice” – that is, ABA – have ever been conducted. In fact, the great majority of ABA studies were so poorly designed that they didn’t merit inclusion in this review. Rather than comparing the results of different treatments for groups of children, behaviorist journals commonly publish single-subject studies, in which one child is assessed before and after treatment. (This method was invented by behaviorists back when their behavior-shaping efforts were limited to lab rats.) You don’t have to be a trained data analyst to see the serious limitations of this method in terms of the results’ lack of generalizability. For the authors of the PB review, these limitations were so glaring that it didn’t even make sense for them to bother with the results of single-subject studies. Yet those dubious results are the primary basis for behaviorists’ claims that ABA is “evidence-based.”

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

Are You Disregarding Harm and Profiting From Our Misery?

What on earth has been going on, in experimentation on our autistic loved ones?
Who on earth thought we were no more human than a lump of clay?

Ann Memmott PGC🌈 (They/she) on Twitter

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 (ABA)-based autism 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 equity 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:

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 communities. 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.

Every day, for me, it is such an honour to do what I can to uphold the lovely autistic people I am delighted to share life with. My family, my friends, my colleagues, the general autistic public on social media. Their honesty, integrity, determination, courage and friendship are worth more than words can say.

We are not “ASD cases”.

We are your friends. We are your research colleagues. We are your neighbours. We are your fellow NHS workers. We are artists, and musicians. We are faith leaders and authors. We are parents and grandparents, brothers and sisters.

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 narratives, to meet autistic teams and really collaborate, really understand.

If you cannot gaze upon us and see our worth, our love, our caring, our whole humanity, this is not the field you should be in.

This is our future. Our lives. Our present. Our history. Our community.

You are not called to erase us, as researchers.

You are called to earn our trust, and share in our future, with love.

Ann’s Autism Blog: Research that dishonours and harms autistic people

Are You Qualified?: Don’t Confuse Your Lecture with Our Life Experience

This is one of the heartbreaks about being autistic. We tend to love certainty and support science. Yet, we constantly face scientific and medical professionals whose credentials we want to trust but whose information has been greatly misinformed. It’s a systemic problem.

John Marble on Twitter

The people society says are the most qualified to help are the people least equipped to understand.

How Autistic Mentors Can Help “Problematic” Autistic Students Succeed In School — THINKING PERSON’S GUIDE TO AUTISM

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 differences 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

And we were told this might happen. A caustic report on the Human Genome Diversity Project released in 1995 by UNESCO’s International Bioethics Committee sounded precisely this warning. It argued that the project, whether it meant to or not, could give racists some basis to believe that certain groups were inferior or superior to others. In particular, the committee was concerned that by bringing genetics to the fore in telling the human story, people would ignore culture and history, and return to the kind of simplistic biological thinking that propelled the eugenics movement in the early twentieth century. It advised scientists to resist the temptation to use their work to shore up any kind of political ideology, whether racist or antiracist. “Racism,” it reminded them in case they had forgotten, is “socially and politically constructed.”

Science is just a pawn in the bloody game.

Superior: The Return of Race Science

Mainly what happened is that the credibility of science was stolen to bolster rationalizing prior bigotries.
They instead learned that bastardized evolutionary theories could be weaponized to justify all kinds of abuses.
From my perspective, though, the deepest of the rifts was the emerging anti-feminist wing and the active neglect of social justice issues. 
I realized it’s destination was where it is now: a shambles of alt-right memes and dishonest hucksters mangling science to promote racism, sexism, and bloody regressive politics.

The train wreck that was the New Atheism

What Instead? Participatory, Emancipatory, Activist Research

Instead of all the above, get participatory, emancipatory, and activist.

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