In a new open-access paper in the Journal of Community Psychology, autistic scholar Monique Botha argues that the discipline’s dominant frameworks have failed to account for the social realities and ethical obligations of studying autism and have often caused harm in the name of objectivity.
Rather than call for more inclusive diagnostics or improved interventions, Botha questions how knowledge is produced in the first place.
Drawing on critical realism and community psychology, Botha outlines a model of research that is participatory, justice-oriented, and accountable to those it studies. She challenges the dominance of positivist and constructivist traditions, arguing that neither is sufficient for understanding autism as a complex, socially embedded phenomenon. Instead, she offers critical realism as a philosophical foundation for doing science with people, not on them.
Botha explains that critical realism offers a model in which members of marginalized communities co-create science, writing:
āThis itself provides a route of social action to a more equitable science, because it means addressing the racist, homophobic, sexist, and ableist science and psychology that has produced knowledge. Further, given that knowledge is embedded, it then only makes sense to heavily involve members of impacted communities throughout all stages of research processesāsomething that is advocated for in autism research.ā
At the heart of her critique is the assertion that mainstream psychology has reduced autism to an object of measurement, an isolated ādisorderā to be studied from afar. As she writes, positivist science privileges detachment and claims of neutrality, yet routinely excludes autistic people as ātoo closeā to the subject to be credible informants. This stance, she argues, has legitimized a century of reductive, essentialist, and sometimes violent research practices.
Botha, who is herself autistic, situates this critique within a broader reckoning over how mental health disciplines have long marginalized the very people they claim to serve. From the objectifying lens of positivist research to the false neutrality of constructivist models, she contends that dominant approaches in autism science have pathologized difference while failing to grapple with the social conditions that produce suffering and the power dynamics that sustain them.
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How does anyone come to believe they have something called ‘autism’ or any of the other ill defined, ever changing DSM construct?
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I’ve wondered the same thing.
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“Autism” is one of those things that most people do NOT realize they have. They, or their parents or guardians, are told that this is what is wrong.
It loosely describes a condition where the individual is unwilling or unable to socialize with others. In the Telepathy Tapes it was discovered that these “autistic” children were simply unable to control their mouths and vocal chords well enough to speak. But most of them knew English (or other languages) quite well and were willing to use their literacy in a form of communication called “spelling.”
They had also a well-developed ability to communicate telepathically and did this regularly with each other, forming friendships and even love relationships. On Earth, of course, lack of ability to speak is a real problem. But it doesn’t mean you are stupid or incapable of creative thought. Some of them are also extremely well-read. These kids have demonstrated an amazing ability to philosophize and love others. They are much better at it than many “normal” children.
As for some of the other DSM categories, some of them are pushed on children and worn as badges of honor, to signify that one has suffered. We have all suffered, though. I don’t see it as anything to be proud of or ashamed of.
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“As for some of the other DSM categories, some of them are pushed on children and worn as badges of honor, to signify that one has suffered. We have all suffered, though. I don’t see it as anything to be proud of or ashamed of.”
Agree 100%.
I think psychiatric labels of any kind can and do cause an enormous amount of insidious damage both individually and collectively. A person often begins seeing themselves as a diagnosis, and society then responds by adding stigma to the mix.
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Many in society still stigmatize being “mentally ill.” But there are some social circles that go so overboard to de-stigmatize it that it has become glamorous or cool to be “bipolar” or some similar label.
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Yes. I think it points to how much people yearn to be seen and belong, to have an identity they think others will relate to.
A sad state of affairs.
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TikTok
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So, we have apparently gone from “DSM diagnoses are not valid” to they are now so valid that people who do not recognise the lived experiences of those who suffer from these real illnesses are denying them “epistemic justice.” Do the people at MIA understand that this stance involves embracing the very biomedical paradigm the site was created to question? This is the ideological perspective MIA wishes to (enthusiastically) promote? As I type this, 4 of the 6 highlighted research news articles on the front page come from a “social justice” perspective, which features woke, feminist, Marxist, identity political perspectives. Why?
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“As I type this, 4 of the 6 highlighted research news articles on the front page come from a “social justice” perspective, which features woke, feminist, Marxist, identity political perspectives. Why?”
I’d like to know why myself. I’m tired of having to sift through MIA’s ideological bias.
If it weren’t for the personal stories, I’d have quit this site a while ago.
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It isn’t buying into it at all
There are differences that autistic people experience, it is a fundamentally different way of experiencing the world, that experience and the acknowledgement of that can exist with out the DSM. This research advocates we research that phenomena without the bias of the DSM.
The construct is the issue, it doesn’t buy into the biomedical model at all.
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I think it’s just because social justice in the Cool Thing right now.
It’s want most young researchers are writing about. That’s my impression anyway.
And it’s not like there isn’t a political dimension to the “mental health” system as it is currently set up. It has always been used as a way to “get rid” of bothersome people, those who know too many of your secrets, political dissidents and enemies.
As long as there is a class of people who have the power to lock up and essentially “disappear” other people, that power will be abused by the socially unwell.
But most of us do desire the power and knowledge to help others. These are not easy to achieve in this world.
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Critical Theory is not going to save us from the giant mistakes of Psychology or Psychiatry. These are not based in “colonialism,” but in much deeper causes.
Anyone who is interested in autism should listen to the Telepathy Tapes. These days “autistic” people are sometimes described as “neurodivergent” although I don’t know that this helps things that much.
The use of the term “autism” started in the 1920s, and thus predates the DSM by decades, although publications somewhat similar to the DSM have always been compiled by psychiatrists, who seem to have a fascination for putting people in categories.
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Good to know, especially now that I’m finally realizing I may very well have always been on the so-called “autistic spectrum”.
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Labeling allows people to pretend they “know” things without any actual meaningful knowledge.
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“DSM” labeling allows professionals, as well as other less “qualified” assholes, to indulge in name calling—and petty name calling at that.
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Categories are helpful if you are running a library.
Many think the Dewey Decimal System is the cat’s meow.
But categories don’t work when it comes to helping each other.
As others here have noted, in the “mental health” system they are used for other purposes.
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Quite so!
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It would be fine if the categories were just used for research purposes, to allow for more concise communication, and to allow people to connect with providers who have expertise in certain areas or to allow them to connect with eachother. I’m not against a labelling system. The problem is the importance that people assign to these labels. People think autism, for example, is either a terrible disease or something that defines them. IMO, the neurodiversity movement is making things much, much worse. It has hurt me personally more than the biomedical model has.
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I am afraid as soon as you allow these labels for “research purposes,” you have granted them a scientific legitimacy that they do not deserve. There is nothing wrong with relying on descriptors to guide research, such as “people who feel chronically depressed,” but as soon as you start calling this “major depression,” you enter into the assumption that folks who feel this way are all the same or similar in both the cause of and solution to their suffering. This, of course, plays into the drug companies’ hands and prevents any real research into the actual causal factors behind a given case of feeling chronically depressed. Such “science” leads to nothing but poor outcomes, as we can see from the current realities of the “mental health” system.
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What’s the difference between a descriptor and a label?
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A descriptor merely relates a particular set of observations. Like someone is anxious or sees things that others don’t see. A label has extra significance, like “anxiety disorder” or “schizophrenia.” The latter implies not only that the person feels anxious, but that they have a condition that causes them to experience anxiety and that they have something significant in common with others having the same label. Three people who feel anxious may well have three different reasons for feeling that way. Whereas three people “with an anxiety disorder” presumably have something WRONG with them, and presumably ALL have the SAME THING wrong with them to fit that label.
I suppose you could say that the descriptor is factual, whereas the label carries biases and assumptions with it that may or may not be true.
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I agree with you about the neurodiversity movement.
Yet neurology problems have been a way – apparently tested and verified – to describe some conditions that were previously described as mental illnesses.
The first condition I found out was explained by neurological differences was called “hypersensitivity.” This was researched by Elaine and Arthur Aron in the 1990s and is technically “sensory processing sensitivity.” There is probably other research like that that I’m just not aware of.
The neurodiversity movement started around the same time. These people, essentially, want to be seen as simply disabled and not actually “sick.”
Yet there are disabilities that some people can grow out of, so it doesn’t make sense to not try to help those who want that.
The problem, of course, is that since the “mental health” system uses the biomedical model, they still feel they have the right to “treat” these conditions.
The biomedical model, neglecting Spirit as it does, interferes with both theory and practice in mental health AND body health.
For example, learning to communicate with autistic kids through spelling or telepathy has brought many of these kids more into society and led them to learn to speak. Even without that, some learn to speak just because it helps them connect with people who aren’t telepathic (which is most of us).
The “mental health” system, not recognizing telepathy as real, has screwed up the lives of many kids by seeing them as hopeless when that was definitely not the case.
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I remember reading about the research done by the Arons on sensory processing sensitivity. I later learned there was a psychololgist (can’t remember which one) who had already idenitified this subset of people, of which I believe I am one.
But Elaine’s use of the term “highly senstive person” or “HSP” turned me off. I hated labels and their acronyms just as much back then.
“Introvert” is the only descriptor/label from psychology that I’m personally comfortble with because there’s nothing “diagnostic” about.
IMHO.
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Some of these words are descriptive of widely recognized behaviors and are taken from ordinary language. They are going to be used to describe people, psychologists or no psychologists.
But terms like “schizophrenic” or “autistic” or “psychotic” are psych technical terms that can mean nothing or anything to most people. I use “psychopath” quite a lot, as I think it is a real phenomenon, but I realize that many probably don’t know what it means. Sometimes I use “professional criminal” instead, as that uses more common words.
The subject is hard to talk about because it has become so confused after decades of psychiatrists and others lying to us about it. Yet people do have problems that we need words for in order to talk about. I would say, though, that exact descriptions of what the person is experiencing, especially from the person themself, is much better than any of these categories.
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Agree 100%.
I also think using psychiatric labels/diagnoses/descriptors says more about the person doing the labeling than the person being labeledāespecially if the person doing the labeling calls themselves a āprofessionalā.
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I think you’re making the assumption that they’re the same or similar from the moment you decide to study them as a group. Even if you say you’re researching “people who feel chronically depressed,” you have to define that somehow. What does “chronically” mean for the purposes of your study? What does “depressed” mean? And isn’t it better if all the researchers define these things in the same way so the studies can build on eachother? Maybe they should create a manual of some sort to make sure they’re on the same page with their definitions/categorizations…
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Good point, actually. A real science would establish the homogeneity of a group before considering them legitimate to study as a group. Merely gathering people who feel a certain way does not meet the minimum criterion for being a meaningful grouping. It would be like studying people with sore knees. Some have bruising, some have arthritis, some have torn ligaments, some have just overexercised. They are not a group in the sense that all folks with, say, rheumatoid arthritis are a group. And interestingly, those with arthritis may have no knee pain at all but pains in other areas. The common CAUSE is what needs to be studied, and no one can find a common cause for all cases of “people who feel chronically depressed.”
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I’ve heard that criticism of autism– that the way it’s defined now is too heterogenous for the category to be useful. It makes sense to me that, to find a cause, you would need to break things down as much as possible. Like, even if you don’t know yet what the different causes are for headaches, you can take a bunch of people who say their heads hurt and start to notice differences between them. Some of the people might experience weird visual symptoms associated with their headaches. Others may have pain in their sinuses. Others may tell you their heads only hurt during times of stress or at certain times of the month. Others may have only started getting headaches after a tbi. Etc. But with autism, they’ve moved in the opposite direction and have combined categories such that the whole thing is pretty much meaningless.
Not that I care because I don’t care what causes autism anyway.
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It’s true. People express in very individual ways. We see that anyone can be “sad” or “happy” so we have names for those emotions, but each person expresses those feelings in their own way. I think it’s best to take each person as an individual case. The challenge then is to see if you can find ways to help people regardless of their individuality. We already do that by teaching people to read and write and so on. Most people consider these skills valuable even though each uses them in their own way.
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I support treating people as individuals.
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Absofuckinlutely.
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“Philosophers Robert Chapman and Havi Carel have shown how autistic people often face a paradox of recognition: if they suffer, they are pathologized; if they thrive, their diagnosis is questioned.”
And the latter is a problem… why?
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