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Anthropologies of American Medicine: Culture, Power, and Practice Series
Living on the Spectrum: Autism and Youth in Community
Honorable Mention, 2020 Stirling Prize for Best Published Work in Psychological Anthropology, given by the Society for Psychological Anthropology
Honorable Mention, New Millennium Book Award, given by the Society for Medical Anthropology
How youth on the autism spectrum negotiate the contested meanings of neurodiversity
Autism is a deeply contested condition. To some, it is a devastating invader, harming children and isolating them. To others, it is an asset and a distinctive aspect of an individual’s identity. How do young people on the spectrum make sense of this conflict, in the context of their own developing identity?
While most of the research on Asperger’s and related autism conditions has been conducted with individuals or in settings in which people on the spectrum are in the minority, this book draws on two years of ethnographic work in communities that bring people with Asperger’s and related conditions together. It can thus begin to explore a form of autistic culture, through attending to how those on the spectrum make sense of their conditions through shared social practices.
Elizabeth Fein brings her many years of experience in both clinical psychology and psychological anthropology to analyze the connection between neuropsychological difference and culture. She argues that current medical models, which espouse a limited definition, are ill equipped to deal with the challenges of discussing autism-related conditions. Consequently, youths on the autism spectrum reach beyond medicine for their stories of difference and disorder, drawing instead on shared mythologies from popular culture and speculative fiction to conceptualize their experience of changing personhood.
In moving and persuasive prose, Living on the Spectrum illustrates that young people use these stories to pioneer more inclusive understandings of what makes us who we are.
Honorable Mention, New Millennium Book Award, given by the Society for Medical Anthropology
How youth on the autism spectrum negotiate the contested meanings of neurodiversity
Autism is a deeply contested condition. To some, it is a devastating invader, harming children and isolating them. To others, it is an asset and a distinctive aspect of an individual’s identity. How do young people on the spectrum make sense of this conflict, in the context of their own developing identity?
While most of the research on Asperger’s and related autism conditions has been conducted with individuals or in settings in which people on the spectrum are in the minority, this book draws on two years of ethnographic work in communities that bring people with Asperger’s and related conditions together. It can thus begin to explore a form of autistic culture, through attending to how those on the spectrum make sense of their conditions through shared social practices.
Elizabeth Fein brings her many years of experience in both clinical psychology and psychological anthropology to analyze the connection between neuropsychological difference and culture. She argues that current medical models, which espouse a limited definition, are ill equipped to deal with the challenges of discussing autism-related conditions. Consequently, youths on the autism spectrum reach beyond medicine for their stories of difference and disorder, drawing instead on shared mythologies from popular culture and speculative fiction to conceptualize their experience of changing personhood.
In moving and persuasive prose, Living on the Spectrum illustrates that young people use these stories to pioneer more inclusive understandings of what makes us who we are.
304 pages, Hardcover
Published July 7, 2020
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July 21, 2022
review of
Elizabeth Fein's Living on the Spectrum - Autism and Youth in Community
by tENTATIVELY, a cONVENIENCE - December 9-14, 2021
For the full review: https://www.goodreads.com/story/show/...
1st off, I may as well put it out there that this bk was written by a friend/acquaintance of mine, someone who lives very close to me in my neighborhood. 2nd, I have a particular interest in autism/Asperger's (wch I still question putting on the "spectrum") b/c I see it as potentially a 'sign of our times' that bears closer scrutiny in relation to medicalization & the pernicious interests & influence of big business, in particular (but not limited to), the pharmaceutical industry. People who deny the extent to wch the greedy will cover their crimes in the interest of continually escalating profit are naive indeed. These factors make this review almost impossible for me to write. Fortunately, I actually like this bk very much so I don't have to risk alienating its author over points of quality. If I'm to alienate the author at all, wch isn't necessarily a given, it'll be more likely over points of socio-philosophy.
"Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person. . . .
"Therefore, when parents say, I wish my child did not have autism, what they're really saying is, I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead." - p 1
Fair enuf.. & I tend to agree - & that more or less establishes the author's position on whether autism shd be characterized as a 'disease', something to be framed by pathology, or as a personality characteristic, something to be framed as intrinsic to the person, potentially viewable as flawed, but no more so than other personality characteristics that people may have who're not necessarily thought of as 'diseased' at all.
Again, I tend to agree.. but then is it also agreable to extend such logic to other states of being? By using the term "Autism Spectrum" a wide range of characteristics get lumped together. At one 'end' of the "spectrum" there might be people whose development is so severely impeded that it might come close to being deprived of a sense, of being blind, e.g.. Some people might consider giving a blind person sight to be something that wd make them no longer them. Consider this:
"Martha's Vineyard Sign Language (MVSL) [mre] Extinct. Formerly in Martha's Vineyard, Massachussetts. Class Deaf Sign Language. Dialects: The early sign language was based on a regional one in Weald, England, where the deaf persons' ancestors had lived. French Sign Language was introduced to Martha's Vineyard in 1817. MVSL was later combined with American Sign Language (ASL), but never became identical to ASL. Lg Use: From 1692 to 1910 nearly all hearers on Martha's Vineyard were bilingual in English and sign language. Other: The first deaf person arrived in 1692. From 1692 to 1950 there was a high rate of hereditary deafness. In the 19th century, 1 in 5700 Americans were deaf, 1 in 155 in Martha's Vineyard, 1 in 25 in one town, 1 in 4 in one neighborhood." - p 304, Ethnologue - Languages of the World
"Deaf MVSL users were not excluded by the rest of society at Martha's Vineyard, but they certainly faced challenges due to their deafness. Marriage between a Deaf person and a hearing person was extremely difficult to maintain, even though both could use MVSL. For this reason, the Deaf usually married the Deaf, raising the degree of inbreeding even beyond that of the general population of Martha's Vineyard. These Deaf-Deaf marriages contributed to the increase of the Deaf population within this community. The MVSL users often associated closely, helping and working with each other to overcome other issues caused by deafness. They entertained at community events, teaching hearing youngsters more MVSL. The sign language was spoken and taught to hearing children as early as their first years, in order to communicate with the many Deaf people they would encounter in school. Lip movement, hand gestures, mannerisms, and facial expressions were all studied. There were even separate schools specifically for learning MVSL. Hearing people sometimes signed even when there were no Deaf people present. For example, children signed behind a schoolteacher's back, adults signed to one another during church sermons, farmers signed to their children across a wide field, and fishermen signed to each other from their boats across the water where the spoken word would not carry." - https://en.wikipedia.org/wiki/Martha%...
Is it so hard to imagine that in the deaf-deaf marriages there wd be no stigma attached to being deaf? - especially when seeing the language prove useful to hearing people? A language that was developed especially for the deaf to communicate w/?
W/o ever being declared pathologically impaired in any way, I was still raised as if many of my most defining characteristics were aberrations that shd be forced out of me in order to make me 'normal'. It's having been thru that experience that helps me be sympathetic to people who undergo similar pressures that're excused by pathology. Whose decision shd it be to decide what characteristics of a person are to be stigmatized & wch aren't? It gets very problematic, eh?!, b/c some people might embrace their difference while others might be too intellectually limited to even understand what that difference is.
One thing I hope to put forth is the thought experiment of imagining a medicalization tabula rasa, a world in wch indivduals are just perceived as individuals; a world in wch people are just identifiable as being who they are & not categorized otherwise. As it is now, who gets stigmatized & who doesn't partially depends on how adept they are at defending their self-identity. Stephen Hawking managed to be categorized as an English theoretical physicist, cosmologist, Lucasian Professor of Mathematics at the University of Cambridge, and author who, at the time of his death, was director of research at the Centre for Theoretical Cosmology at the University of Cambridge rather than exclusively as someone suffering from motor neurone disease (amyotrophic lateral sclerosis – ALS, for short).
As a sidenote, it's interesting to me that Hawking was born into a family of physicians. I'm always looking for signs of iatrogenesis. Did his physician family do anything to him that resulted in the ALS? My stepfather had ALS. He was awarded a regular military payment specifically b/c of his ALS b/c so many soldiers had contracted it that, apparently, it was cheaper for the government to pay off as if there 'might' be a connection rather than have closer investigation reveal using the soldiers as guinea pigs &/or exposing them to toxicities that the powers-that-be wd rather have remain hush-hush.
"Autism is a deeply contested condition. Sometimes, people talk about it as a public health crisis, an invading enemy to be identified and eliminated. Sometimes, people talk about it as a fundamental and valued aspect of personhood and identity, something to be protected rather than something protected against. As autism rose to its extraordinary state of prominence over the past several decades, these two ways of talking about autism—and the conflicts between them—dominated a great deal of the public conversation." - p 2
What if it's neither of the above? My interest in autism is in a very nascent stage. I'm keeping my mind open to the mainstream arguments & the controversial ones. As a 68 yr old who's witnessed autism grow from a very rare condition into something practically omnipresent (esp during the broadened dignostic era of the 'spectrum'),
["The estimated prevalence rate of autism spectrum disorder among children in the United States at the time I conducted this interview was 1 in 150 (see Centers for Disease Control and Prevention, 2019, for a historical summary of rates over time)." - endnote, p 264]
I'm beginning to think of it as an aspect of environmental change. If the world were to flood wd human babies born w/ gills & fins be considered 'deformed'? I think not. If the overpopulation of the world by humans is recognized an an ecological threat might it be considered an 'adaptation' if more & more people are born infertile? Then again, if infertility were to be a side-effect of medical experimentation wd it be inconceivable that some people wd consider it to be a boon? & might want to amplify that side-effect?
What if humans are becoming more insect-like? That seems to be the case to me. Ants & humans seem to have a fair amt in common. What if humans really are just divided into worker-humans, army-humans, queen-attendant-humans? After all, it appears that musician-humans are now "non-essential" - what good are they to the hive?
"At the same time, a growing movement of individuals on the autism spectrum, often referred to as (part of) the neurodiversity movement, argue that autism is instead a natural and valuable aspect of human diversity, a cultural identity calling for accommodation rather than prevention. A cure for autism would thus be not a mercy but a genocidal suppression of difference, equivalent to "curing" someone's race, gender, or sexual orientation." - p 2
I find that valid enuf - but at the same time I return to my proposed thought experiment "of imagining a medicalization tabula rasa, a world in wch indivduals are just perceived as individuals; a world in wch people are just identifiable as being who they are & not categorized otherwise". What accommodations wd be made then? Of course, such a thought experiment involves the extra complication of imagining a world in wch there isn't discrimination against these people hypothetically perceived as individuals - rather than as membors of a particular race, sex, sexual orientation, or psychological state, etc. It's hard to imagine as a possibility, isn't it? Even in today's day & age a person considered to be a high-functioning Aspie still has to deal w/ whether their family is rich or poor, whether they can manage to access services or not, etc.. In other words, privilege doesn't just revolve around one factor - there's a whole hierarchical plethora - can we 'level' those? - as the English Civil War's Levellers might've proposed?
"The Levellers were a political movement during the English Civil War (1642–1651) committed to popular sovereignty, extended suffrage, equality before the law and religious tolerance. The hallmark of Leveller thought was its populism, as shown by its emphasis on equal natural rights, and their practice of reaching the public through pamphlets, petitions and vocal appeals to the crowd." - https://en.wikipedia.org/wiki/Levellers
A black lesbian woman on the dysfunctional end of the autism spectrum (if there can even be such a person) might not have the same idea of self-advocacy as a rich white male heterosexual diagnosed as high-functioning.
"Discourses rooted in autistic self-advocacy and the celebration of neurodiversity are still intertwined with the assumptions of the medical paradigms within which they originated, in intricate and subtle ways. And people living with autism spectrum diagnoses must find ways to live under both of these descriptions, integrating these seemingly irreconcilable discourses in the business of their daily lives." - p 3
What if the neurodiversity movement were to make being so-called 'autistic' accepted as just another human possibility? Wd it then be fair for both the diagnosis to go away, to be discredited, & for the autism-specific services to go away too? A sort of sink-or-swin Darwinism in wch autism is considered potentially valuable, thereby putting the autist in a position where they'd fend for themselves as much as other 'non-autistic' people? What if the 'autism spectrum' were to become so definitionally broadened that everyone wd be considered 'autistic' at any moment when they seemed developmentally challenged, prone to repetitive behavior, socially inept, or whatever else might seem relevant?
"This book takes a different approach: It is based on ethnographic fieldwork in communities where people on the autism spectrum come together." - p 4
As a person who's often found myself in social situations where the people around me are suicidal or otherwise troubled, I've consistently stated that it's the community that people have, the quantity & quality of their friends that gives them the strength to keep going against hostile forces - & NOT the Medical Industry, no matter how well-intentioned. As such, Fein's "ethnographic fieldwork in communities" is important to me as something that may or may not bear out my assertion. Where were we?
"Through a process I call "divided medicalization," the former get misrepresented as the latter: Complex, multivalent neurodevelopmental conditions are produced and then reduced to fit within a preexisting, disease-oriented clinical paradigm. Through this process of expansion and constriction of diagnostic categories, phenomena that play out between the individual and the environment are individualized: Their social and sensory dimensions get mapped back onto the individual as the locus of explanation and site of intervention. Aspects of experience that transcend the bounds of the physical body—the connections between our selves and our social partners, between our senses and the things being sensed, between our attention and the material to which we attend, and so forth—are thus occluded, rendered invisible." - p 5
Given that everything is potentially relevant, how can we pay attn to it all w/o being exclusionary? We can't. The more we try to pin down the essentials, the more the other essentials escape us. Is it possible to establish a fluid state of mind that doesn't over-categorize but still remains sensitive to aspects of the subject under scrutiny at the times when they come to the fore w/o becoming fixated as things move on? Probably. This approach, then, also probably comes into conflict w/ trying to establish firm diagnostic criteria.
"Through attending to their shared social practices, organized around the care and maintenance of locally interconnected systems, we can gain some insight into how to mitigate the loneliness and isolation that too often accompanies autistic difference, by intervening at the troubled intersection between the individual and their social surroundings. That space of intersection, I argue, is where autism happens." - p 5
I still feel stuck w/ the problems of whether the 'autism spectrum' is ultimately 'viable' - at least for me as the free thinker thinking about this outside the box of current training on the subject. It still seems to me that having a 'spectrum' that has people w/ developmental limits at one end & high-functioning at the other end pretty much describes human possibility in general. If I were better informed this wd probably not puzzle me so much. Perhaps as I work my way thru this bk, the idea of the spectrum will be clearer to me. Then again, maybe I shd consult & quote the DSM-5 & get it over w/. SO, here it is, pp 50-51 of Diagnostic and Statistical Manual of Mental Disorders 5th edition. I'll intersperse commentary in [brackets]:
"Autism Spectrum Disorder
Diagnostic Criteria 299.00 (F84.0)
A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):
["examples are illustrative, not exhaustive": I always appreciate qualifiers - in this case, it seems an appropriate caution]
1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
[Does this go both ways? In other words, when I have a conversation w/ someone in wch they don't express any interest in what I'm saying who's being the bad communicator? Example: I'd just posted a movie online of a friend of mine signing another friend of ours's poem ("Rhoda Mappo signs John M. Bennett's "The Spitter" May, 1986 Texas": online here: http://youtu.be/l7H8DJ0CYJE). Since the poem is unusual & wd require advanced sign-language skills to enunciate it in this way, I thought it was interesting. I approached 2 of my coworkers & asked them if they'd be interested in seeing it. They gave me a very firm NO & proceeded to talk about whether it was more in fashion to wear one's shirt-tail tucked in or left out. We obviously didn't have shared interests, despite our both working for a museum - but are either or both of us showing deficits "in social-emotional reciprocity"?]
2. Deficits in nonverbal communicative behaviors used for social interaction, ranging,
for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of
gestures; to a total lack of facial expressions and nonverbal communication.
[How often are such deficits brought on by medication? How many seemingly affectless people are people who are 'numbed-down' (a variation of 'dumbed-down')?]
3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties
in sharing imaginative play or in making friends; to absence of interest in peers.
[If the people in one's social environment are more interested in the issue of shirt-tails-in or shirt-tails-out & one is interested music, literature, art, anarchism, social planning, performance, psychology, wherein lies the problem in making friends? Is it 'normal' to numb oneself down to such an extreme that all intellectual interests disappear? Just for the sake of having profoundly vapid conversations?]
Specify current severity:
Severity is based on social communication impairments and restricted, repetitive
patterns of behavior (seeTable 2).
For the full review: https://www.goodreads.com/story/show/...
Elizabeth Fein's Living on the Spectrum - Autism and Youth in Community
by tENTATIVELY, a cONVENIENCE - December 9-14, 2021
For the full review: https://www.goodreads.com/story/show/...
1st off, I may as well put it out there that this bk was written by a friend/acquaintance of mine, someone who lives very close to me in my neighborhood. 2nd, I have a particular interest in autism/Asperger's (wch I still question putting on the "spectrum") b/c I see it as potentially a 'sign of our times' that bears closer scrutiny in relation to medicalization & the pernicious interests & influence of big business, in particular (but not limited to), the pharmaceutical industry. People who deny the extent to wch the greedy will cover their crimes in the interest of continually escalating profit are naive indeed. These factors make this review almost impossible for me to write. Fortunately, I actually like this bk very much so I don't have to risk alienating its author over points of quality. If I'm to alienate the author at all, wch isn't necessarily a given, it'll be more likely over points of socio-philosophy.
"Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person. . . .
"Therefore, when parents say, I wish my child did not have autism, what they're really saying is, I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead." - p 1
Fair enuf.. & I tend to agree - & that more or less establishes the author's position on whether autism shd be characterized as a 'disease', something to be framed by pathology, or as a personality characteristic, something to be framed as intrinsic to the person, potentially viewable as flawed, but no more so than other personality characteristics that people may have who're not necessarily thought of as 'diseased' at all.
Again, I tend to agree.. but then is it also agreable to extend such logic to other states of being? By using the term "Autism Spectrum" a wide range of characteristics get lumped together. At one 'end' of the "spectrum" there might be people whose development is so severely impeded that it might come close to being deprived of a sense, of being blind, e.g.. Some people might consider giving a blind person sight to be something that wd make them no longer them. Consider this:
"Martha's Vineyard Sign Language (MVSL) [mre] Extinct. Formerly in Martha's Vineyard, Massachussetts. Class Deaf Sign Language. Dialects: The early sign language was based on a regional one in Weald, England, where the deaf persons' ancestors had lived. French Sign Language was introduced to Martha's Vineyard in 1817. MVSL was later combined with American Sign Language (ASL), but never became identical to ASL. Lg Use: From 1692 to 1910 nearly all hearers on Martha's Vineyard were bilingual in English and sign language. Other: The first deaf person arrived in 1692. From 1692 to 1950 there was a high rate of hereditary deafness. In the 19th century, 1 in 5700 Americans were deaf, 1 in 155 in Martha's Vineyard, 1 in 25 in one town, 1 in 4 in one neighborhood." - p 304, Ethnologue - Languages of the World
"Deaf MVSL users were not excluded by the rest of society at Martha's Vineyard, but they certainly faced challenges due to their deafness. Marriage between a Deaf person and a hearing person was extremely difficult to maintain, even though both could use MVSL. For this reason, the Deaf usually married the Deaf, raising the degree of inbreeding even beyond that of the general population of Martha's Vineyard. These Deaf-Deaf marriages contributed to the increase of the Deaf population within this community. The MVSL users often associated closely, helping and working with each other to overcome other issues caused by deafness. They entertained at community events, teaching hearing youngsters more MVSL. The sign language was spoken and taught to hearing children as early as their first years, in order to communicate with the many Deaf people they would encounter in school. Lip movement, hand gestures, mannerisms, and facial expressions were all studied. There were even separate schools specifically for learning MVSL. Hearing people sometimes signed even when there were no Deaf people present. For example, children signed behind a schoolteacher's back, adults signed to one another during church sermons, farmers signed to their children across a wide field, and fishermen signed to each other from their boats across the water where the spoken word would not carry." - https://en.wikipedia.org/wiki/Martha%...
Is it so hard to imagine that in the deaf-deaf marriages there wd be no stigma attached to being deaf? - especially when seeing the language prove useful to hearing people? A language that was developed especially for the deaf to communicate w/?
W/o ever being declared pathologically impaired in any way, I was still raised as if many of my most defining characteristics were aberrations that shd be forced out of me in order to make me 'normal'. It's having been thru that experience that helps me be sympathetic to people who undergo similar pressures that're excused by pathology. Whose decision shd it be to decide what characteristics of a person are to be stigmatized & wch aren't? It gets very problematic, eh?!, b/c some people might embrace their difference while others might be too intellectually limited to even understand what that difference is.
One thing I hope to put forth is the thought experiment of imagining a medicalization tabula rasa, a world in wch indivduals are just perceived as individuals; a world in wch people are just identifiable as being who they are & not categorized otherwise. As it is now, who gets stigmatized & who doesn't partially depends on how adept they are at defending their self-identity. Stephen Hawking managed to be categorized as an English theoretical physicist, cosmologist, Lucasian Professor of Mathematics at the University of Cambridge, and author who, at the time of his death, was director of research at the Centre for Theoretical Cosmology at the University of Cambridge rather than exclusively as someone suffering from motor neurone disease (amyotrophic lateral sclerosis – ALS, for short).
As a sidenote, it's interesting to me that Hawking was born into a family of physicians. I'm always looking for signs of iatrogenesis. Did his physician family do anything to him that resulted in the ALS? My stepfather had ALS. He was awarded a regular military payment specifically b/c of his ALS b/c so many soldiers had contracted it that, apparently, it was cheaper for the government to pay off as if there 'might' be a connection rather than have closer investigation reveal using the soldiers as guinea pigs &/or exposing them to toxicities that the powers-that-be wd rather have remain hush-hush.
"Autism is a deeply contested condition. Sometimes, people talk about it as a public health crisis, an invading enemy to be identified and eliminated. Sometimes, people talk about it as a fundamental and valued aspect of personhood and identity, something to be protected rather than something protected against. As autism rose to its extraordinary state of prominence over the past several decades, these two ways of talking about autism—and the conflicts between them—dominated a great deal of the public conversation." - p 2
What if it's neither of the above? My interest in autism is in a very nascent stage. I'm keeping my mind open to the mainstream arguments & the controversial ones. As a 68 yr old who's witnessed autism grow from a very rare condition into something practically omnipresent (esp during the broadened dignostic era of the 'spectrum'),
["The estimated prevalence rate of autism spectrum disorder among children in the United States at the time I conducted this interview was 1 in 150 (see Centers for Disease Control and Prevention, 2019, for a historical summary of rates over time)." - endnote, p 264]
I'm beginning to think of it as an aspect of environmental change. If the world were to flood wd human babies born w/ gills & fins be considered 'deformed'? I think not. If the overpopulation of the world by humans is recognized an an ecological threat might it be considered an 'adaptation' if more & more people are born infertile? Then again, if infertility were to be a side-effect of medical experimentation wd it be inconceivable that some people wd consider it to be a boon? & might want to amplify that side-effect?
What if humans are becoming more insect-like? That seems to be the case to me. Ants & humans seem to have a fair amt in common. What if humans really are just divided into worker-humans, army-humans, queen-attendant-humans? After all, it appears that musician-humans are now "non-essential" - what good are they to the hive?
"At the same time, a growing movement of individuals on the autism spectrum, often referred to as (part of) the neurodiversity movement, argue that autism is instead a natural and valuable aspect of human diversity, a cultural identity calling for accommodation rather than prevention. A cure for autism would thus be not a mercy but a genocidal suppression of difference, equivalent to "curing" someone's race, gender, or sexual orientation." - p 2
I find that valid enuf - but at the same time I return to my proposed thought experiment "of imagining a medicalization tabula rasa, a world in wch indivduals are just perceived as individuals; a world in wch people are just identifiable as being who they are & not categorized otherwise". What accommodations wd be made then? Of course, such a thought experiment involves the extra complication of imagining a world in wch there isn't discrimination against these people hypothetically perceived as individuals - rather than as membors of a particular race, sex, sexual orientation, or psychological state, etc. It's hard to imagine as a possibility, isn't it? Even in today's day & age a person considered to be a high-functioning Aspie still has to deal w/ whether their family is rich or poor, whether they can manage to access services or not, etc.. In other words, privilege doesn't just revolve around one factor - there's a whole hierarchical plethora - can we 'level' those? - as the English Civil War's Levellers might've proposed?
"The Levellers were a political movement during the English Civil War (1642–1651) committed to popular sovereignty, extended suffrage, equality before the law and religious tolerance. The hallmark of Leveller thought was its populism, as shown by its emphasis on equal natural rights, and their practice of reaching the public through pamphlets, petitions and vocal appeals to the crowd." - https://en.wikipedia.org/wiki/Levellers
A black lesbian woman on the dysfunctional end of the autism spectrum (if there can even be such a person) might not have the same idea of self-advocacy as a rich white male heterosexual diagnosed as high-functioning.
"Discourses rooted in autistic self-advocacy and the celebration of neurodiversity are still intertwined with the assumptions of the medical paradigms within which they originated, in intricate and subtle ways. And people living with autism spectrum diagnoses must find ways to live under both of these descriptions, integrating these seemingly irreconcilable discourses in the business of their daily lives." - p 3
What if the neurodiversity movement were to make being so-called 'autistic' accepted as just another human possibility? Wd it then be fair for both the diagnosis to go away, to be discredited, & for the autism-specific services to go away too? A sort of sink-or-swin Darwinism in wch autism is considered potentially valuable, thereby putting the autist in a position where they'd fend for themselves as much as other 'non-autistic' people? What if the 'autism spectrum' were to become so definitionally broadened that everyone wd be considered 'autistic' at any moment when they seemed developmentally challenged, prone to repetitive behavior, socially inept, or whatever else might seem relevant?
"This book takes a different approach: It is based on ethnographic fieldwork in communities where people on the autism spectrum come together." - p 4
As a person who's often found myself in social situations where the people around me are suicidal or otherwise troubled, I've consistently stated that it's the community that people have, the quantity & quality of their friends that gives them the strength to keep going against hostile forces - & NOT the Medical Industry, no matter how well-intentioned. As such, Fein's "ethnographic fieldwork in communities" is important to me as something that may or may not bear out my assertion. Where were we?
"Through a process I call "divided medicalization," the former get misrepresented as the latter: Complex, multivalent neurodevelopmental conditions are produced and then reduced to fit within a preexisting, disease-oriented clinical paradigm. Through this process of expansion and constriction of diagnostic categories, phenomena that play out between the individual and the environment are individualized: Their social and sensory dimensions get mapped back onto the individual as the locus of explanation and site of intervention. Aspects of experience that transcend the bounds of the physical body—the connections between our selves and our social partners, between our senses and the things being sensed, between our attention and the material to which we attend, and so forth—are thus occluded, rendered invisible." - p 5
Given that everything is potentially relevant, how can we pay attn to it all w/o being exclusionary? We can't. The more we try to pin down the essentials, the more the other essentials escape us. Is it possible to establish a fluid state of mind that doesn't over-categorize but still remains sensitive to aspects of the subject under scrutiny at the times when they come to the fore w/o becoming fixated as things move on? Probably. This approach, then, also probably comes into conflict w/ trying to establish firm diagnostic criteria.
"Through attending to their shared social practices, organized around the care and maintenance of locally interconnected systems, we can gain some insight into how to mitigate the loneliness and isolation that too often accompanies autistic difference, by intervening at the troubled intersection between the individual and their social surroundings. That space of intersection, I argue, is where autism happens." - p 5
I still feel stuck w/ the problems of whether the 'autism spectrum' is ultimately 'viable' - at least for me as the free thinker thinking about this outside the box of current training on the subject. It still seems to me that having a 'spectrum' that has people w/ developmental limits at one end & high-functioning at the other end pretty much describes human possibility in general. If I were better informed this wd probably not puzzle me so much. Perhaps as I work my way thru this bk, the idea of the spectrum will be clearer to me. Then again, maybe I shd consult & quote the DSM-5 & get it over w/. SO, here it is, pp 50-51 of Diagnostic and Statistical Manual of Mental Disorders 5th edition. I'll intersperse commentary in [brackets]:
"Autism Spectrum Disorder
Diagnostic Criteria 299.00 (F84.0)
A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):
["examples are illustrative, not exhaustive": I always appreciate qualifiers - in this case, it seems an appropriate caution]
1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
[Does this go both ways? In other words, when I have a conversation w/ someone in wch they don't express any interest in what I'm saying who's being the bad communicator? Example: I'd just posted a movie online of a friend of mine signing another friend of ours's poem ("Rhoda Mappo signs John M. Bennett's "The Spitter" May, 1986 Texas": online here: http://youtu.be/l7H8DJ0CYJE). Since the poem is unusual & wd require advanced sign-language skills to enunciate it in this way, I thought it was interesting. I approached 2 of my coworkers & asked them if they'd be interested in seeing it. They gave me a very firm NO & proceeded to talk about whether it was more in fashion to wear one's shirt-tail tucked in or left out. We obviously didn't have shared interests, despite our both working for a museum - but are either or both of us showing deficits "in social-emotional reciprocity"?]
2. Deficits in nonverbal communicative behaviors used for social interaction, ranging,
for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of
gestures; to a total lack of facial expressions and nonverbal communication.
[How often are such deficits brought on by medication? How many seemingly affectless people are people who are 'numbed-down' (a variation of 'dumbed-down')?]
3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties
in sharing imaginative play or in making friends; to absence of interest in peers.
[If the people in one's social environment are more interested in the issue of shirt-tails-in or shirt-tails-out & one is interested music, literature, art, anarchism, social planning, performance, psychology, wherein lies the problem in making friends? Is it 'normal' to numb oneself down to such an extreme that all intellectual interests disappear? Just for the sake of having profoundly vapid conversations?]
Specify current severity:
Severity is based on social communication impairments and restricted, repetitive
patterns of behavior (seeTable 2).
For the full review: https://www.goodreads.com/story/show/...
December 22, 2024
A well researched view into how ppl on the spectrum see themselves and how others see and treat them. A Moving and powerful reminder we are all human.
January 26, 2025
It is rare when you can tell that an author really thought about every word they decided to print, but with this book you can tell. The writing is excellent. As a parent of someone on the spectrum, I especially appreciate how Fein asks parents and kids the same questions and respectfully allows room for everyone to have a voice. She is allowing a range of responses instead of trying to narrow this complex topic down to any one perspective.
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