What's the difference between the medical and social models of autism? And what gave rise to the social model of autism?
Topics discussed also include:
If you'd like to know more about topics discussed in this episode, check out:
"Neurodiversity: An Insider's Perspective" by Den Houting
"Out of DSM: Depathologizing Homosexuality" by Drescher
"Challenging Psychiatric Classification: Healthy Autistic Diversity and the Neurodiversity Movement" by Dyck and Russell
"Understanding and Promoting the Human Rights of Autistic People" by Iyall-Smith
"Autistic Self-Advocacy and the Neurodiversity Movement: Implications for Autism Early Intervention Research and Practice" by Leadbitter et al.
"Privileging Autistics of Color: A Human Rights Approach to Applied Behavior Analysis (ABA) Therapy" by Rubey
Episode intro and outro music: "Bedroom Eyes" by Audiobinger (no changes or modifications were made)
The Other Autism theme music: "Everything Feels New" by Evgeny Bardyuzha.
All episodes written and produced by Kristen Hovet.
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Today we're talking about the medical model of autism, often used interchangeably with what's called the deficit model of autism, versus the social model of autism. You may have heard these words flying around a lot lately, including here on this podcast. And some listeners wrote to say they wanted to hear more about this. Also, I wanted to apologize for the popping sounds in the last episode. I got really excited and put my face right up to the mic. So I'm trying this podcaster trick on like flipping the microphone upside down, sort of like hanging over me, not really hanging over me, but like hanging upside down in front of my face. So I'm kind of like talking at the mic at an angle. I'm hoping that's gonna help. Hopefully, it doesn't make me sound weird, or distant or whatever. And hopefully, there won't be popping sounds when I do p and b sounds and get all, you know, activated and excited or whatever. This is a topic where I might get excited. We'll see how it goes. So anyway.
To get into this topic, we need to explore the neurodiversity movement, because that figures very prominently in this move from the medical model to the social model. The neurodiversity movement has had a tremendous impact on the way autistic individuals are thought about and treated in research and clinical settings. It's also had a huge impact on the representation of autistic individuals in the media. While all of these sectors are playing catch up, they're not there yet, we can't deny the massive impact and changes that have resulted as direct effects of the neurodiversity movement.
So where did the neurodiversity movement come from? First of all, it's important to note that this isn't a formal movement. I'd say I'm part of it, but I'm not part of a neurodiversity movement association or anything like that. I don't have a badge, you know, it's not like one of those card carrying things. I think some people, when they hear that there's this movement, they think that it's like all organized and there are chapters and people are members or not members, they have to sign up. No, it's more like, think of like the civil rights movement and things like that. It's a social movement in society. Okay, so now that we have that covered, the neurodiversity movement can be considered a branch or kind of an offshoot of social justice. And, as I understand it, the movement or way of thinking arose out of a large scale paradigm shift that began shortly after or around World War Two. A series of other social movements or discourses that aligned with a widespread emphasis on human rights started cropping up and included civil rights, feminism and women's rights, gay and lesbian rights, patients' rights, and so on. Then this really interesting concept of mad pride, M A D, mad pride, arose in the 1960s and challenged the idea that certain identities, such as being mentally ill or gay, were diseased, less-than, or something to be mourned or fixed. Proponents of the mad pride concept really took aim at psychiatry and its penchant for codifying mental health into a huge and complicated system of deficits and disorders, all of which required fixing, improvement, and medical interventions of one kind or another.
The neurodiversity movement followed from all of these influences, with members upholding what can be called a strengths-based view of autism and other neurodivergent identities, such as ADHD, learning impairments, Tourette syndrome, dyslexia, and so on. Since the 1990s, the neurodiversity movement has existed under the umbrella of social health activism, and maintains that autism is a set of normal human traits that represent neurological variation. In other words, those who align themselves with the neurodiversity movement tend to view autism not as a pathology or disorder, but as a human difference, like personality, or sexuality, or gender identity. And, like any human difference, and frankly, literally anything that is even remotely related to being human, it has its strengths and its weaknesses.
If I had to sum up what the neurodiversity movement stands for, in the context of autism, I'd say it holds that number one, autism reflects a set of normal human traits or neurological variations. Number two, autistic is an identity in its own right. And number three, autistic individuals comprise a culture and a minority group, not an unfortunate pathology. And if I had to sum up the neurodiversity movement as an umbrella movement encompassing all of the neurodivergent identities, I'd say it holds that all humans have value and worth in their own right. And that human difference is necessary to our survival as a species. And it's worthy of celebration.
The neurodiversity movement also rejects the pursuit of autism cures, or even the goal of curing autism. And as a side note, a lot of researchers still have that as their goal, either spoken or unspoken. They do the work that they do in an effort to cure autism. The neurodiversity movement also questions the ethics of the most popular form of therapy for autistic children and youth, which is called applied behavior analysis or ABA, since ABA aims to reduce or eliminate autistic traits and make autistic people behave more like non autistic people. The founder or so-called father of ABA, Ivar Lovaas, sought to return autistic children, quote, to normalcy, and make them indistinguishable from their normal friends, end quote, which involves the use of rewards and physical punishments or physical aversives. Back in Lovaas's time, these aversives included painful electrical shocks, beatings, withholding food - that bothers me - and other truly atrocious so-called treatments. While current proponents of ABA say that ABA has changed to focus less on aversives, I think it would be very hard to rid the therapy of its basic or foundational philosophy. That is the current problem now, in my opinion. Frankly, it started as a way to make autistic kids less autistic, or rid them of their unwanted autistic traits, not unwanted to the individuals themselves because no one ever asked them, but unwanted to their ABA practitioners and families. This is all at odds with core human rights and social justice values. Behaviorism itself, which ABA arose from, is questionable in its refusal to truly account for internality - of internal wishes, thoughts, emotions, even psychological impacts and the psychological landscape of the human mind. It's just cause and effect when it comes to behaviorism. Okay, I've clearly entered into a tangent and I'd like to save ABA for another time. I promise there will be more on this soon. I've just got to restrain myself from going on and on.
Okay, so all that to say, it seems like humans really love taking identities that in any way diverge from what's typical or run of the mill, and initially turning them into like the worst possible thing. Like, oh, my god, you're really different, so surely you must be possessed by demons. Let's do a fun little exorcism. If that doesn't work, might as well burn you at the stake or something. Maybe several centuries or 1000s of years later, humans might evolve a bit and conceive of the difference as maybe some kind of illness instead. Nine times out of 10 they'll likely blame the parents and almost always the mother will bear the brunt of the blame because yeah, that's what happens. You're different from us, so let's smack a fancy medicalized label onto you and make it sound really scary and horrible, definitely shameful, and we'll create all these treatments and interventions and careers built up around treating you for your horrible malady. You're welcome. I do want to make it clear, joking aside, that I think many disorders - particularly in the context of psychiatric disorders or conditions and neurodevelopmental conditions - are legit, and they're named and treated appropriately. I'm talking about human variation that's treated like a problem to be cured, fixed, and or eradicated. For example, let's take homosexuality. That has a doozy of a history and helps to illustrate what I'm talking about here.
Being gay was once considered a psychological disorder that needed to be treated. According to an article by Jack Drescher, homosexuality was - not so long ago - thought of as a disease that sharply deviated from normal heterosexual development. Pathologizing theories of homosexuality, which dominated Western thought for several decades, held that some internal defect or pathogenic entity caused homosexuality and, like other pathogenic diseases, it needed to be cured. Some theorists, especially those of particular religious persuasions viewed - and honestly, horrendously still view, in some cases - homosexuality as evil, a sin, a sign of the devil, or some other such nonsense. Shockingly, it wasn't removed from the Diagnostic and Statistical Manual of Mental Disorders, aka the DSM, until 1973. When I read that, I was horrified. That's relatively recently in human history! How did it stay in there for so freakin' long? The main point in mentioning this is that autism may eventually be removed from the DSM, too. And we may look back and wonder what we were thinking to have it in there in the first place.
This is pretty much what's meant when we talk about the medical model, aka the deficit model, versus the social model of autism. This same duality applies to many conditions. If you take many conditions and put them through the social lens, what happens is that what we think of as disability is really socially constructed. In other words, I'm disabled because of the inadequacies and deficiencies of my surroundings, of my environment, not because of any inadequacy or deficiency inherent in me. In a different setting, I wouldn't be considered disabled. In fact, some of my traits that come from my condition would be conceived as benefits, as strengths. Seen another way, when seen through a social lens, the concept of disability itself arises from a mismatch between one's physical, cognitive, psychological, and emotional characteristics and the particular attributes, values and preferences of the society in which they find themselves. When you align those two things, the disability aspect fizzles away.
A really important component of the medical model is that it sees people with physical and psychological differences as being broken or incomplete versions of full humans who are in need of interventions or treatments so that they can appear or become more normal. If you look at a lot of treatment modalities or interventions, for example, with autism, you'll notice that a lot of the goals of these interventions are indeed to get the autistic person to function in ways that are more in line with what's normal. They might not articulate it that way, or put it on paper in those terms, but if you ask yourself what they're actually trying to do, that's exactly what it is. They're trying to get the person to stop their autistic traits, their autistic behaviors, their autistic characteristics, and act more like a frickin' normal non autistic human. These goals are not normal for the autistic person, and often aren't particularly wanted by the autistic person. Sometimes the autistic person rages against the goals that are assigned to them, yet the goals are forced upon them from external pressures often coming from their own families, maybe their peers, educators, health providers, and even society at large.
A relatively new academic field called Critical Autism Studies emerged as a result of the neurodiversity movement and involves the careful scrutiny of power relationships in autism research, policy, and healthcare. Critical Autism Studies also involves the promotion of views of autism that challenge the deficit based model of autism that continues to directly influence how autism and autistic people are viewed by the public, addressed by government and healthcare professionals, and represented in the media. In addition, critical autism studies also involves the formation of research methods and theoretical approaches that are inclusive of autistic individuals and their perspectives every step of the way. This means that more and more autistic individuals are becoming researchers themselves. They're leading research teams and becoming leaders of academic departments. Frankly, they're revolutionising the field.
I do want to mention that there have been some things said against the neurodiversity movement or, you know, critiques of the neurodiversity movement. And one of them that stuck out to me, when I was doing some background reading, was this notion that the neurodiversity movement is only really applicable to those with fewer support needs - in other words, autistic individuals that have been diagnosed with level one autism, formerly called Asperger's or high functioning autism. And I'm not totally sure what to say in response to that critique. I guess I have some thoughts, but nothing super concrete. And number one is: as the diagnostic materials become perfected and as diagnostic tools become better and more accurate, and we learn - we're taking the evidence from research and from clinical practice and we're applying it to the actual tools used during autism assessments, what's happening is more and more people are being diagnosed with level one autism. And some of the people who fell through the diagnostic cracks as children and youth are being diagnosed as adults. So there's been kind of an explosion of autism diagnoses. And from what we're seeing with the numbers, level one autism looks like it might be the main presentation of autism. In other words, there might be far more level one autistics than level two and three combined. So in that way, the neurodiversity movement really speaks for potentially the majority of the autistic population. And the other thing I want to mention is that some aspects of the neurodiversity movement might not represent those diagnosed with level two or level three, autism, and especially those with the most support needs. And we're talking people that will not be able to live on their own and require daily support in order to complete daily tasks - feeding themselves, cleaning themselves, taking medication, and so on. So these are people with high support needs, they often have other conditions that are potentially even more pervasive. They might have intellectual disability, they might have cerebral palsy, they might have fragile X syndrome, they might have some other condition. And so the ways of thinking represented by the neurodiversity movement might not apply in the same ways to those individuals, because it would be a lot harder to say, oh, you're not disabled. Like we just need to change the language here and change our lens. That's like a slap in the face in a major way. Obviously, that doesn't make sense, so I get that critique. Again, these are just random thoughts. This isn't something I've really, really thought hard about. And I'd really love to hear your thoughts. If you thought of this, if you have some way of countering that critique, or some kind of response that makes more sense than what I'm trying to say here, please send it in. And maybe I'll read it in one of the next episodes.
And I want to put out a call for people who are interested in having a Zoom call with me and having it recorded for a future podcast episode - talking about your diagnosis experience, your experience getting diagnosed later in life. I'd love to hear your stories. If you're comfortable sharing it on the podcast, you can be anonymous, you can change your name, you can use a pseudonym. I think it would be interesting to start having more conversations on here. It's something I wanted to do this season was to start having guests, like I've been saying. I do have one in the works coming up and then that'll hopefully start the ball rolling with getting more guests on the podcast. And if you have any other ideas, have any other questions, I've got a list of them from listeners, slowly working through them, but this season we'll have more episodes than the last. So we've got a long way to go. Again, anyone wants to share their diagnosis story, please email me. My email is in the show notes. That's all I have for you today.
Thank you so much for being here.
Until next time, bye.