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 (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:

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

Identity Politics: A Healthy Love for Ourselves, Our Communities, and All People

We realize that the only people who care enough about us to work consistently for our liberation are us. Our politics evolve from a healthy love for ourselves, our sisters and our community which allows us to continue our struggle and work.

This focusing upon our own oppression is embodied in the concept of identity politics. We believe that the most profound and potentially most radical politics come directly out of our own identity, as opposed to working to end somebody else’s oppression.

Source: The Combahee River Collective Statement – COMBAHEE RIVER COLLECTIVE

That’s what it boils down to. Who else is going to consistently, determinedly work for us but us?

We’re autistic.

We’re disabled.

The words autistic and disabled connect us with an identity, a community, and a culture. With identity politics, we work for community liberation and the liberation of all people.

Identity is the place to understand what forms of oppression are operating within your own life. From here, coalitions can be built with others who face similar forms of oppression, so long as it is also understood that oppression is not experienced the same across identities. This is where intersectionality, the theory developed by black feminist scholar and activist Kimberlé Crenshaw, is useful. It helps us to understand that class oppression will look different for those who also exist at the intersection of marginalized race, gender, and sexual identities. Any coalition worth forming has to take stock of those differences or suffer an agenda that is insufficient to liberating all people.

Source: What Liberals Get Wrong About Identity Politics | The New Republic

Given our racist, heterosexist, and ableist societies, we especially work for all when we center disabled Black women.

If Black women were free, it would mean that everyone else would have to be free since our freedom would necessitate the destruction of all the systems of oppression.

Source: The Combahee River Collective Statement – COMBAHEE RIVER COLLECTIVE

The ultimate goal of meaningful inclusion for the disability community will never be fully realized until black and brown people are also free.

Source: Racism and Ableism – AAPD

Here are some disabled and neurodivergent Black women and non-binary to follow:

Equity Literacy: Learning to Be a Threat to Inequity in Our Spheres of Influence

Mindset marketing is no threat to inequity and injustice. It’s bikeshedding of the same old deficit ideology. It flakes off quickly.

A big influence on me is Paul Gorski of the Equity Literacy Institute. I wish every educator with growth mindset, grit, SEL, and PBIS in their social media bios would take Gorski’s equity courses. Our SpEd family and other marginalized families would appreciate not having to do that reframing work over-and-over again for free.

Originally tweeted by Soni Gill (@Soni_Gill1214) on November 10, 2020.

Image description: Shiny Thing Racial Equity Arithmetic: Racism + diversity programming + an anti-bullying program + Kindness Matters + SEL, PBIS, and restorative practices + grit and growth mindset = Racism

Their tagline at the Equity Literacy Institute is “Learning to be a threat to inequity in our spheres of influence”. That distills what we must do. Mindset marketing ain’t it. Get structural, and get equity literate.

With this in mind, my purpose is to argue that when it comes to issues surrounding poverty and economic justice the preparation of teachers must be first and foremost an ideological endeavour, focused on adjusting fundamental understandings not only about educational outcome disparities but also about poverty itself. I will argue that it is only through the cultivation of what I call a structural ideology of poverty and economic justice that teachers become equity literate (Gorski 2013), capable of imagining the sorts of solutions that pose a genuine threat to the existence of class inequity in their classrooms and schools.

Source: Poverty and the ideological imperative: a call to unhook from deficit and grit ideology and to strive for structural ideology in teacher education

We must avoid being lulled by popular “diversity” approaches and frameworks that pose no threat to inequity—that sometimes are popular because they are no real threat to inequity. The basic principles of equity literacy help us ensure we keep a commitment to equity at the center of our equity work and the broader equity conversation.

The Direct Confrontation Principle: The path to equity requires direct confrontations with inequity—with interpersonal, institutional, cultural and structural racism and other forms of oppression. “Equity” approaches that fail to directly identify and confront inequity play a significant role in sustaining inequity.

The Equity Ideology Principle: Equity is more than a list of practical strategies. It is a lens and an ideological commitment. There are no practical strategies that will help us develop equitable institutions if we are unwilling to deepen our understandings of equity and inequity and reject ideologies that are not compatible with equity.

The Prioritization Principle: In order to achieve equity we must prioritize the interests of the students and families whose interests historically have not been prioritized. Every policy, practice, and program decision should be considered through the question, “What impact is this going to have on the most marginalized students and families? How are we prioritizing their interests?”

The Redistribution Principle: Equity requires the redistribution of material, cultural, and social access and opportunity. We do this by changing inequitable policies, eliminating oppressive aspects of institutional culture, and examining how practices and programs might advantage some students over others. If we cannot explain how our equity initiatives redistribute access and opportunity, we should reconsider them.

The “Fix Injustice, Not Kids” Principle: Educational outcome disparities are not the result of deficiencies in marginalized communities’ cultures, mindsets, or grittiness, but rather of inequities. Equity initiatives focus, not on “fixing” students and families who are marginalized, but on transforming the conditions that marginalize students and families.

The One Size Fits Few Principle: No individual identity group shares a single mindset, value system, learning style, or communication style. Identity-specific equity frameworks (like group- level “learning styles”) almost always are based on simplicity and stereotypes, not equity.

The Evidence-Informed Equity Principle: Equity approaches should be based on evidence for what works rather than trendiness. “Evidence” can mean quantitative research, but it can also mean the stories and experiences of people who are marginalized in your institution.

Source: Basic Principles for Equity Literacy

Briefly, deficit ideology is a worldview that explains and justifies outcome inequalities- standardized test scores or levels of educational attainment, for example-by pointing to supposed deficiencies within disenfranchised individuals and communities (Brandon, 2003; Valencia, 1997a; Weiner, 2003; Yosso, 2005). Simultaneously, and of equal importance, deficit ideology discounts sociopolitical context, such as the systemic conditions (racism, economic injustice, and so on) that grant some people greater social, political, and economic access, such as that to high-quality schooling, than others (Brandon, 2003; Dudley-Marling, 2007; Gorski, 2008a; Hamovitch, 1996). The function of deficit ideology, as I will describe in greater detail later, is to justify existing social conditions by identifying the problem of inequality as located within, rather than as pressing upon, disenfranchised communities so that efforts to redress inequalities focus on “fixing” disenfranchised people rather than the conditions which disenfranchise them (Weiner, 2003; Yosso, 2005).

At the core of deficit ideology is the belief that inequalities result, not from unjust social conditions such as systemic racism or economic injustice, but from intellectual, moral, cultural, and behavioral deficiencies assumed to be inherent in disenfranchised individuals and communities (Brandon, 2003; Gorski, 2008a, 2008b; Valencia, 1997a; Yosso, 2005).

And this is the surest sign of deficit ideology: the suggestion that we fix inequalities by fixing disenfranchised communities rather than that which disenfranchises them. This, then, is the function of deficit ideology: to manipulate popular consciousness in order to deflect attention from the systemic conditions and sociopolitical context that underlie or exacerbate inequities, such as systemic racism or economic injustice, and to focus it, instead, on recycling its own misperceptions, all of which justify inequalities (García & Guerra, 2004; Jennings, 2004). It deflects our scornful gaze from the mechanisms of injustice and the benefactors of these mechanisms, and trains it, instead, on those citizens with the least amount of power to popularize a counter-narrative, just as the dominant “achievement gap” discourse draws attention away from underlying systemic conditions, such as growing corporate control of public schools, and pushes it toward “at-risk” youth from “broken” homes whose “culture of poverty” impedes them from “making it.” Deficit ideology defines every social problem in relation to those toward the bottom of the power hierarchy, trains our gaze in that direction and, as a result, manipulates the popular discourse in ways that protect and reify existing sociopolitical conditions (Brandon, 2003; Yosso, 2005).

Source: Unlearning Deficit Ideology and the Scornful Gaze: Thoughts on Authenticating the Class Discourse in Education

  • Attend to the practices, policies, and aspects of institutional culture that traumatize children at school
  • We must infuse trauma-informed education with a robust understanding of, and responsiveness to, the traumas of systemic oppression
  • Dislodge hyper-punitive cultures and ideologies

Being trauma-informed means consciously cultivating space in our mental models so that, even if we know nothing about a particular set of circumstances, we avoid the temptation to mindlessly apply rules.

Source: How Trauma-Informed Are We, Really? – ASCD

20 reasons why I (an autistic person) am stressed pretty much constantly…

Pete Wharmby is one of our favorite neurodiversity advocates and consultants. We are happy to support his work and recommend adding him to your personal learning network.

Here’s a thread from Pete on autistic stressors that we here at Stimpunks very much relate to.

20 reasons why I (an autistic person) am stressed pretty much constantly…

A thread… 🧵
#autism #experience #autismacceptance

1. Nobody ever seems to say what they mean, so I end up having to guess all the time but as I overthink them, the guesses are frequently wrong #autism

2. Everywhere is too noisy, and much of that noise is totally unnecessary. It takes up loads of my brain’s processing power. The combination of loud background noise and conversation is particularly bad. #autism

3. My brain, probably cos of ADHD, doesn’t know how to relax so I find myself never getting real down time to gradually recover. It’s layer over layer of stress, like sediments creating continents. #autism

4. The temperature is always uncomfortable. It’s either too hot or too cold and my autistic ass isn’t able to regulate it so I always feel bleurgh. Only solution is cool moving air on my face. #autism

5. Every social interaction has the potential to go awfully wrong. Either some kind of miscommunication or misunderstanding, or a full on argument, because I can’t do conversation automatically – it’s all on manual and fails so often.

6. I’m too burned out from years of masking to be able to do my career anymore, so I’m trying new stuff and it’s really scary. #autism

7. I am petrified of criticism due to how it makes me feel. Its so severe that I avoid any interaction that could lead to it. This is called Rejection Sensitivity Dysphoria and it sucks. #autism

8. My brain rebels whenever I am asked to do anything, with an immediate reaction of ‘no way,’ no matter how beneficial the thing might be. I have to do everything in my own time which is a nightmare for actually getting things done. This is Pathological Demand Avoidance

9. I absolutely need a set steady routine and anything that disturbs this can make me very unhappy, as my routine is the one thing staving off total stress. #autism

10. Sometimes my interests, which generally act to keep me happy and grounded, just disappear and no longer work in that way, leaving me totally at sea. That’s actually happening at the moment. #autism

11. If I have disclosed being autistic then I tend to get more patronised and spoken down to in a way that never happened before I was diagnosed. #autism

12. It is assumed that as I’m autistic I will have some amazing savant-like skill and I do not. This is irritating. #autism

13. People insist on making small talk all the time. I hate it, as its such a weird little verbal dance that I don’t understand. It’s talk but neither party is at all interested in the meaning of the words. #autism

14. People insist on using telephones and I have a severe phobia. I can’t make phonecalls at all and struggle to answer them too. This causes huge problems. #autism

15. My executive function is broken, meaning my ability to plan, prioritise, organise and order things is pretty bad. This makes trying to survive very difficult, especially when self employed. #autism

16. I forget everything, all the time. I don’t forget information much but I do forget to *do stuff*, pretty much constantly. This can cause problems with relationships, in work and elsewhere. I’m always dealing with the consequences of this.

17. Everything in the world is made for non-autistic people, meaning that all autistic people are immediately at a serious disadvantage. This is exhausting and depressing. #autism

18. I am painfully aware of rates of depression, anxiety and suicide among autistic people, which makes everything feel much harder to bear. #autism

19. I am constantly afraid that I have upset someone, at some point, somewhere and it makes me miserable. #autism

20. Non-autistic people don’t appear particularly interested in improving things for the sizeable autistic population, which is a constant source of annoyance and sadness. #autism

Now bear in mind all of that is from a cis white male. Throw in any further intersections and the situation gets much more difficult. This is a pretty low level of stress compared to some.

Originally tweeted by Pete Wharmby (@commaficionado) on July 19, 2021.

I, Ryan, relate to every single reason, but especially this one:

I too burned out of my career, and now I’m trying something new with Stimpunks. Scary indeed.