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Chasing the Intact Mind: How the Severely Autistic and Intellectually Disabled Were Excluded from the Debates That Affect Them Most
A comprehensive introduction to the concept of the "intact mind" and how it affects disability policy and practice.
The concept of the intact mind, first described in a 2006 memoir, refers to the idea that inside every autistic child is an intelligent, typical child waiting to be liberated by the right diet, the right treatment intervention, the right combination of supports and accommodations. The sentiment itself is not new. Emerging largely out of psychoanalytic theory dating back to the end of the 19th century, the intact mind was later amplified in memoirs, where parents wrote of their tireless efforts to free their children from the grip of autism. Though the idea gives hope to parents devastated by a child's diagnosis, Amy Lutz argues that it has also contributed to widespread dismantling of services badly needed by severely disabled children and their families.
In Chasing the Intact Mind , Lutz traces the history of the intact mind concept, explaining how it influences current policy and practice affecting those with autism. Lutz provides a historical analysis of the intact mind narrative and describes how the concept--originally unique to autism--has come to inform current debates at the heart of intellectual and developmental disability practice and policy in the United States, including battles over sheltered workshops, legal guardianship, and facilitated communication. Lutz argues that focusing on the intact mind and marginalizing those with severe disability reproduces historic patterns of discrimination that yoked human worth to intelligence, and that it is only by making space for the impaired mind that we will be able to resolve these ongoing clashes--as well as even larger questions of personhood, dependency, and care.
The concept of the intact mind, first described in a 2006 memoir, refers to the idea that inside every autistic child is an intelligent, typical child waiting to be liberated by the right diet, the right treatment intervention, the right combination of supports and accommodations. The sentiment itself is not new. Emerging largely out of psychoanalytic theory dating back to the end of the 19th century, the intact mind was later amplified in memoirs, where parents wrote of their tireless efforts to free their children from the grip of autism. Though the idea gives hope to parents devastated by a child's diagnosis, Amy Lutz argues that it has also contributed to widespread dismantling of services badly needed by severely disabled children and their families.
In Chasing the Intact Mind , Lutz traces the history of the intact mind concept, explaining how it influences current policy and practice affecting those with autism. Lutz provides a historical analysis of the intact mind narrative and describes how the concept--originally unique to autism--has come to inform current debates at the heart of intellectual and developmental disability practice and policy in the United States, including battles over sheltered workshops, legal guardianship, and facilitated communication. Lutz argues that focusing on the intact mind and marginalizing those with severe disability reproduces historic patterns of discrimination that yoked human worth to intelligence, and that it is only by making space for the impaired mind that we will be able to resolve these ongoing clashes--as well as even larger questions of personhood, dependency, and care.
192 pages, Hardcover
Published October 3, 2023
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September 23, 2023
This book has, for me, an essential and rare quality: it made me feel less crazy. Its subtitle, How the Severely Autistic and Intellectually Disabled Were Excluded from the Debates That Affect Them Most, places it directly in my wheelhouse, expressing the concept of the gentrification of disability concisely. Lutz is a scholar who studies issues of disability and related policies, and she’s been on this corner for a long time; not coincidentally, she is also mother to a profoundly autistic son. Her new book is both resolutely academic and crackling with a frustration that builds inside me day after day: the sense that the disability studies/disability rights movement is making things worse for people with disabilities, and doing so armed with overwhelming self-righteousness that chokes the debate. By surveying the world of autism memoirs, the politically-motivated decline in services and programs specifically for the autistic, and the troubling return of a discredited practice, she demonstrates that the cultural conversation about her son’s developmental disorder has been hijacked by activists who care more about their doctrine than the vulnerable people they ostensibly speak for.
What is the “intact mind”? It’s Lutz’s term for the theory that every person with a cognitive or developmental disability must necessarily have some other version of themselves trapped inside their heads, a “normal” version. So a nonverbal autistic person, like Lutz’s son Jonah, is presumed in the conventional narrative to have another self that could potentially be reached with the correct intervention. In a thorough review of memoirs written by autistic parents and autistic people (the latter of which are sometimes dubious), she again and again finds the assumption that there’s a fully functional person “somewhere in there.” As she notes, with compassion that’s both obvious and very understandable, there’s simply no reason to believe that this is true; some profoundly autistic people who are nonverbal may have conventional consciousness that they can’t express, but given the degree of overall impairment such people often have (including issues like an inability to control their bathroom functions, difficulty moving around without assistance, and repetitive self-injury), the insistence that every nonverbal autistic person harbors an intact mind within them is strange and unhelpful. But this attitude is part of what makes Lutz a target of the disability activist crowd, and in fact many people consider the term “nonverbal” inherently bigoted, saying instead “autistic people who choose not to speak.” The evidence that such an active, conscious choice has been made is nonexistent.
In addition to being baseless, this attitude reveals an ugly moral assumption. As Lutz notes, insisting that every profoundly autistic person must hold a conventional being inside of them inevitably suggests that possession of a typical consciousness is necessary for that autistic person to be worthy of love and accommodation. This is a profoundly odd thing for a movement based on the equal value of “neuroatypicality” to think. And the doctrine of the intact mind is not merely relegated to people with autism but also to those with cerebral palsy (which frequently but not always causes cognitive impairments), serious traumatic brain injuries, and other conditions that are known to impair thinking. All are assumed by many, including those in the disability studies/disability activism sphere, to have conventional minds that they either can’t express or choose not to, underlining the sense that rights and compassion must be deserved through access to cognitive health, a perverse and ugly doctrine. Worse, the notion of the intact mind has been used to justify various kinds of abuse. This thinking led, to pick a notorious example, to the Anna Stubblefield case, where an academic sexually assaulted a man whose cerebral palsy has prevented him from ever speaking and who has been assessed as having the mental abilities of a two or three year old.
The notion of the intact mind also speaks to one of my central frustrations with the whole disability activist community: their absolute inability to ever accept that some things in life are just bad, that tragedy and unhappiness exist and cannot be legislated away. You can’t just say the word “ableist” until the world capitulates to your sunny, false worldview. It’s sad to think that there are millions of kids out there whose cognitive and developmental disabilities prevent them from having a conventional mind, and sad to think of the millions of parents who are desperate to connect more deeply with their profoundly autistic children. And so the intact mind is simply assumed, and anyone who questions it is labeled a bigot, guilty of “ableism.” This is the same impulse that inspires people on social media to insist, with the sublime confidence of the ignorant, that mental illness never causes anyone to be violent, which is both flagrantly untrue and terribly cruel to the mentally ill. It’s the same attitude that has forced me to spend the last half-decade or so of my treatment fending off the idea that my bipolar disorder, which has come close to both ruining and ending my life, is my “superpower.” It’s the same attitude that has a generation of young professionals doggedly pursuing diagnoses and then, having secured them, blaring them from the comfort of their affluent lives, helping to further render the concept of disability meaningless.
Lutz examines various issues that have been impacted by the rise of disability activists and their very particular sense of what’s best for people with disabilities. Core to the problem, in Lutz’s view, is that the disability studies school sees any separate program or facility as inherently segregated and thus pernicious. This has led to the perverse outcome of disability activists shutting down various efforts to better serve the severely disabled under the guise of fighting segregation. Disability studies activists, for example, are in large majorities adamantly opposed to the existence of supportive housing that specifically serves profoundly autistic patients, despite the fact that such housing can be the safest and most nurturing spaces for them. An interesting ethical question concerns 14(c) programs, which have traditionally allowed for those with cognitive and developmental disabilities to work for less than minimum wage in order to experience working life and have more structure in their days. On the one hand, I’m a firm believer in minimum wages that define a certain floor for any kind of work, especially considering that it’s been demonstrated again and again that they do not have the negative effect on hiring that conservatives claim. However, many of the people who have held these 14(c) jobs have reported that they enjoyed doing them, and Lutz cites evidence suggesting that when these programs are shut down, most of the people with disabilities within them don’t transition into regular work (as disability activists insist they will) but instead sit at home.
That’s a complicated political issue, for me, but not for those activists; they can imagine a world where (for example) someone with Down syndrome and an IQ of 60 can work well enough to be worth hiring under conventional capitalist terms, so they insist that that must be the reality. When sad reality and their idealism conflict, they always side with the idealism. And as Lutz demonstrates, they’ve been remarkably effective in getting these programs shut down, shouting about equity and obscuring the perspectives of the people who enjoy participating in these programs and their parents, who have much less social capital and thus less ability to speak. They insist those who take advantage of 14(c) programs are being exploited, despite the fact that only 2% of the employers are for-profit entities and that often 14(c) facilities function more as centers for supervision and community than as actual workplaces. But that itself is part of the activist complaint. “The Disability Rights movement and the allied Neurodiversity Movement are hegemonically opposed to all disability-specific settings - like specialized classrooms and schools, larger residential facilities (such as intentional communities, campuses, and farmsteads), and vocational programs,” writes Lutz. Never mind if those are helpful to the actual population involved.
A not-complicated issue, for me, is guardianship or conservatorship; some people have special needs that require them to be cared for by a committed adult, usually a parent or sibling. That’s reality. But the activist class has worked relentlessly to make it harder to establish guardianship over adults with serious cognitive disabilities and eroded the control of those who hold such guardianship positions. (That these changes to law and policy have often happened in the name of Britney Spears, an immensely wealthy woman whose life is nothing like that of the average person living under guardianship, is just one of those little absurdities.) The legal hurdles to establishing guardianship in adulthood, even for parents who have cared for their disabled children for life, have grown, along with the cost of overcoming them. In one awful story, Lutz discusses a seriously-impaired autistic 19-year-old who was enticed to a motel room by a 40-year-old man who had traveled 3,000 miles for the encounter. When his horrified mother called the police, they told her that because she did not have legal guardianship over her adult son, they couldn’t help her. That’s a condition that many are working to make more common, in the name of autonomy for those who are immensely vulnerable to manipulation and abuse. It’s totally senseless to me - but many would prefer to pretend that everyone is capable of living on their own. That’s the happy story, so that’s the story activists tell.
Nowhere is all of this sadder or more destructive than with the resurgence of facilitated communication, which Lutz suggests is making a comeback, aided by disability activist rhetoric. For the unfamiliar, Lutz presents a concise history of “FC” and its sad history. Facilitated communication is an objectively, repeatedly, comprehensively discredited practice that supposedly enables nonverbal people with autism and a handful of other cognitive disabilities to speak. Though there are various physical techniques, all of facilitated communication involves a “facilitator” physically aiding a given patient’s use of an instrument through which they communicate, such as a keyboard or imageboard or similar tool to produce language. The claim is that these patients have fully intact minds - indeed, a stunning number of children using facilitated communication have been revealed to be geniuses for their age, go figure - but have physical impediments that keep them from using communication tools on their own. Parents, desperate to establish a connection with their disabled children, view facilitated communication as a lifeline, vehemently defend its validity, and have used the reasonable accommodation provisions in the Americans with Disabilities Act to force public school districts to pay for it. Lutz cites research showing that this can cost schools $30,000 a year.
This is particularly problematic given that facilitated communication is a farce. It is a form of fraud through wishful thinking. I have to be adamant about this, we all have to be adamant about this, because as Lutz demonstrates facilitated communication has improbably survived its repeated debunking. Facilitated communication has been conclusively proven not to work again and again and again. Every reputable study has shown that the facilitator, not the nonverbal person, is guiding the communication; the studies that purport to show otherwise are all deeply flawed and seemingly motivated to find a positive outcome. There are several variations of studies, but the most common involves showing both the facilitator and the person they’re helping a series of images, with neither able to see what the other sees. They will alternatively be shown the same images or different images, without either knowing when. And every time there’s a difference between what the facilitator sees and what the nonverbal person who’s supposedly talking sees, the facilitated communication results in repeating what the facilitator sees. Again and again and again, the nonverbal subject of facilitated communication is unable to express what only they would know, while what’s described through the facilitator is that which only the facilitator knows. The rate at which this outcome doesn’t occur, across hundreds and hundreds of test subjects and repetitions, is statistically indistinguishable from zero. If any human research result can be called truly dispositive, the fraudulence of facilitated communication is it.
The whole thing is tragic, touched with an element of dark farce. One previously nonverbal and otherwise comprehensively-disabled autistic patient’s supposed first words through facilitated communication were “I am intelligent!” This sounds nothing like an actual disabled person suddenly finding themselves able to communicate, but does sound exactly like an adult who’s a partisan for facilitated communication subconsciously cosplaying as one. (FC people are generally considered not to be engaged in active deception but instead are well-meaning, stubborn, and unable to understand the ideomotor effect.) Lutz describes an autistic child who communicates by pointing at a letter board. Some autistic people authentically do this without controversy; the trouble starts when someone else is manipulating their hands. This particular child wasn’t guided in that way, and yet their communication proved to be illusory as well - they could only form coherent messages when one of the parents was holding the board that they touched. If the board was placed in a fixed position or held by someone else, nothing they produced made any sense. Yet proponents of FC refuse to acknowledge the obvious implications of such a thing.
This is, of course, all quite sad. The parents who are trying to reach their children through FC could not possibly be more sympathetic. And though I think the huge corpus of research demonstrating that it doesn’t work should convince FC facilitators to drop it, I also understand that many of them are true believers who do what they do out of a sincere desire to help nonverbal kids communicate. Their effect in the world, however, is destructive. There are some people out there who acknowledge that FC is a matter of complex wishful thinking but ask, in effect, what the harm is. There’s the pragmatic and the more philosophical answers to that question. The pragmatic answer is that the subconscious manipulations of facilitators can have very dramatic effects. In FC’s heyday, profoundly autistic children began “accusing” their parents of sexual abuse through their facilitators at astonishing rates. As Lutz documents, dozens and dozens of heretofore nonverbal kids took advantage of their newfound communicative ability by supposedly claiming that they had been molested. Given that FC was still rather rare and the baseline population of profoundly autistic children small, this suggested a rate of parental sexual abuse that was astonishingly high. In order to demonstrate their innocence, many parents who had recently championed FC were forced to challenge its validity, helping inspire the wave of research that debunked it. This must have been excruciating for them.
Speaking to the deeper philosophical sense of why it’s wrong to humor the pleasant fiction of facilitated communication, beyond the fact that we should tell the truth, Lutz is eloquent.
If you’d like to get a sense of the destruction facilitated communication is capable of, you might consider Gigi Jordan. While practicing FC with her 8-year-old nonverbal son, “he” “told” her that he wanted to die, and she obliged by feeding him pills until he died. She later suffocated herself to death before she could be jailed. Is that extreme and a vestige of much deeper problems with that particular woman? Sure. But it also speaks to the profound danger of allowing people to substitute their own subconscious voice for that of someone with a serious disability. Facilitated communication is a dangerous fraud that must be opposed. But to oppose it, we have to have the courage to stand up to people who think that they can throw the word “ableist” around and get whatever they want. I invite you to join me in saying without apology that, however great the pain of parents of profoundly autistic children, humoring the fantasy that facilitated communication represents is not the solution. There can be no ambiguity: facilitated communication does not work. And not a single dime of taxpayer money should be spent on discredited, destructive pseudoscience.
Lutz’s book is, as I said, academic. I think many readers who aren’t used to academic publishing will find the going a little slow, even for a slight book at 130 pages. This is necessary, however, for Lutz to carefully go through the evidence she brings to bear, particularly in her patient work looking at how the memoirs written by the parents of autistic children helped to cement the “intact mind” attitude into public consciousness. And the whole book is suffused with sadness, a mother’s sadness and an advocate’s sadness. Lutz has taken a great deal of heat in her career, from predictable sources. I can’t imagine that she wants to be known as an enemy of the disability rights movement, and I’m guessing she would much rather simply advocate for disabled people like her son. Personally, I’m very happy to have this fight, I think it's a vital one, and I’m lucky to enjoy the benefit of the wisdom and guidance of Lutz’s new book.
What is the “intact mind”? It’s Lutz’s term for the theory that every person with a cognitive or developmental disability must necessarily have some other version of themselves trapped inside their heads, a “normal” version. So a nonverbal autistic person, like Lutz’s son Jonah, is presumed in the conventional narrative to have another self that could potentially be reached with the correct intervention. In a thorough review of memoirs written by autistic parents and autistic people (the latter of which are sometimes dubious), she again and again finds the assumption that there’s a fully functional person “somewhere in there.” As she notes, with compassion that’s both obvious and very understandable, there’s simply no reason to believe that this is true; some profoundly autistic people who are nonverbal may have conventional consciousness that they can’t express, but given the degree of overall impairment such people often have (including issues like an inability to control their bathroom functions, difficulty moving around without assistance, and repetitive self-injury), the insistence that every nonverbal autistic person harbors an intact mind within them is strange and unhelpful. But this attitude is part of what makes Lutz a target of the disability activist crowd, and in fact many people consider the term “nonverbal” inherently bigoted, saying instead “autistic people who choose not to speak.” The evidence that such an active, conscious choice has been made is nonexistent.
In addition to being baseless, this attitude reveals an ugly moral assumption. As Lutz notes, insisting that every profoundly autistic person must hold a conventional being inside of them inevitably suggests that possession of a typical consciousness is necessary for that autistic person to be worthy of love and accommodation. This is a profoundly odd thing for a movement based on the equal value of “neuroatypicality” to think. And the doctrine of the intact mind is not merely relegated to people with autism but also to those with cerebral palsy (which frequently but not always causes cognitive impairments), serious traumatic brain injuries, and other conditions that are known to impair thinking. All are assumed by many, including those in the disability studies/disability activism sphere, to have conventional minds that they either can’t express or choose not to, underlining the sense that rights and compassion must be deserved through access to cognitive health, a perverse and ugly doctrine. Worse, the notion of the intact mind has been used to justify various kinds of abuse. This thinking led, to pick a notorious example, to the Anna Stubblefield case, where an academic sexually assaulted a man whose cerebral palsy has prevented him from ever speaking and who has been assessed as having the mental abilities of a two or three year old.
The notion of the intact mind also speaks to one of my central frustrations with the whole disability activist community: their absolute inability to ever accept that some things in life are just bad, that tragedy and unhappiness exist and cannot be legislated away. You can’t just say the word “ableist” until the world capitulates to your sunny, false worldview. It’s sad to think that there are millions of kids out there whose cognitive and developmental disabilities prevent them from having a conventional mind, and sad to think of the millions of parents who are desperate to connect more deeply with their profoundly autistic children. And so the intact mind is simply assumed, and anyone who questions it is labeled a bigot, guilty of “ableism.” This is the same impulse that inspires people on social media to insist, with the sublime confidence of the ignorant, that mental illness never causes anyone to be violent, which is both flagrantly untrue and terribly cruel to the mentally ill. It’s the same attitude that has forced me to spend the last half-decade or so of my treatment fending off the idea that my bipolar disorder, which has come close to both ruining and ending my life, is my “superpower.” It’s the same attitude that has a generation of young professionals doggedly pursuing diagnoses and then, having secured them, blaring them from the comfort of their affluent lives, helping to further render the concept of disability meaningless.
Lutz examines various issues that have been impacted by the rise of disability activists and their very particular sense of what’s best for people with disabilities. Core to the problem, in Lutz’s view, is that the disability studies school sees any separate program or facility as inherently segregated and thus pernicious. This has led to the perverse outcome of disability activists shutting down various efforts to better serve the severely disabled under the guise of fighting segregation. Disability studies activists, for example, are in large majorities adamantly opposed to the existence of supportive housing that specifically serves profoundly autistic patients, despite the fact that such housing can be the safest and most nurturing spaces for them. An interesting ethical question concerns 14(c) programs, which have traditionally allowed for those with cognitive and developmental disabilities to work for less than minimum wage in order to experience working life and have more structure in their days. On the one hand, I’m a firm believer in minimum wages that define a certain floor for any kind of work, especially considering that it’s been demonstrated again and again that they do not have the negative effect on hiring that conservatives claim. However, many of the people who have held these 14(c) jobs have reported that they enjoyed doing them, and Lutz cites evidence suggesting that when these programs are shut down, most of the people with disabilities within them don’t transition into regular work (as disability activists insist they will) but instead sit at home.
That’s a complicated political issue, for me, but not for those activists; they can imagine a world where (for example) someone with Down syndrome and an IQ of 60 can work well enough to be worth hiring under conventional capitalist terms, so they insist that that must be the reality. When sad reality and their idealism conflict, they always side with the idealism. And as Lutz demonstrates, they’ve been remarkably effective in getting these programs shut down, shouting about equity and obscuring the perspectives of the people who enjoy participating in these programs and their parents, who have much less social capital and thus less ability to speak. They insist those who take advantage of 14(c) programs are being exploited, despite the fact that only 2% of the employers are for-profit entities and that often 14(c) facilities function more as centers for supervision and community than as actual workplaces. But that itself is part of the activist complaint. “The Disability Rights movement and the allied Neurodiversity Movement are hegemonically opposed to all disability-specific settings - like specialized classrooms and schools, larger residential facilities (such as intentional communities, campuses, and farmsteads), and vocational programs,” writes Lutz. Never mind if those are helpful to the actual population involved.
A not-complicated issue, for me, is guardianship or conservatorship; some people have special needs that require them to be cared for by a committed adult, usually a parent or sibling. That’s reality. But the activist class has worked relentlessly to make it harder to establish guardianship over adults with serious cognitive disabilities and eroded the control of those who hold such guardianship positions. (That these changes to law and policy have often happened in the name of Britney Spears, an immensely wealthy woman whose life is nothing like that of the average person living under guardianship, is just one of those little absurdities.) The legal hurdles to establishing guardianship in adulthood, even for parents who have cared for their disabled children for life, have grown, along with the cost of overcoming them. In one awful story, Lutz discusses a seriously-impaired autistic 19-year-old who was enticed to a motel room by a 40-year-old man who had traveled 3,000 miles for the encounter. When his horrified mother called the police, they told her that because she did not have legal guardianship over her adult son, they couldn’t help her. That’s a condition that many are working to make more common, in the name of autonomy for those who are immensely vulnerable to manipulation and abuse. It’s totally senseless to me - but many would prefer to pretend that everyone is capable of living on their own. That’s the happy story, so that’s the story activists tell.
Nowhere is all of this sadder or more destructive than with the resurgence of facilitated communication, which Lutz suggests is making a comeback, aided by disability activist rhetoric. For the unfamiliar, Lutz presents a concise history of “FC” and its sad history. Facilitated communication is an objectively, repeatedly, comprehensively discredited practice that supposedly enables nonverbal people with autism and a handful of other cognitive disabilities to speak. Though there are various physical techniques, all of facilitated communication involves a “facilitator” physically aiding a given patient’s use of an instrument through which they communicate, such as a keyboard or imageboard or similar tool to produce language. The claim is that these patients have fully intact minds - indeed, a stunning number of children using facilitated communication have been revealed to be geniuses for their age, go figure - but have physical impediments that keep them from using communication tools on their own. Parents, desperate to establish a connection with their disabled children, view facilitated communication as a lifeline, vehemently defend its validity, and have used the reasonable accommodation provisions in the Americans with Disabilities Act to force public school districts to pay for it. Lutz cites research showing that this can cost schools $30,000 a year.
This is particularly problematic given that facilitated communication is a farce. It is a form of fraud through wishful thinking. I have to be adamant about this, we all have to be adamant about this, because as Lutz demonstrates facilitated communication has improbably survived its repeated debunking. Facilitated communication has been conclusively proven not to work again and again and again. Every reputable study has shown that the facilitator, not the nonverbal person, is guiding the communication; the studies that purport to show otherwise are all deeply flawed and seemingly motivated to find a positive outcome. There are several variations of studies, but the most common involves showing both the facilitator and the person they’re helping a series of images, with neither able to see what the other sees. They will alternatively be shown the same images or different images, without either knowing when. And every time there’s a difference between what the facilitator sees and what the nonverbal person who’s supposedly talking sees, the facilitated communication results in repeating what the facilitator sees. Again and again and again, the nonverbal subject of facilitated communication is unable to express what only they would know, while what’s described through the facilitator is that which only the facilitator knows. The rate at which this outcome doesn’t occur, across hundreds and hundreds of test subjects and repetitions, is statistically indistinguishable from zero. If any human research result can be called truly dispositive, the fraudulence of facilitated communication is it.
The whole thing is tragic, touched with an element of dark farce. One previously nonverbal and otherwise comprehensively-disabled autistic patient’s supposed first words through facilitated communication were “I am intelligent!” This sounds nothing like an actual disabled person suddenly finding themselves able to communicate, but does sound exactly like an adult who’s a partisan for facilitated communication subconsciously cosplaying as one. (FC people are generally considered not to be engaged in active deception but instead are well-meaning, stubborn, and unable to understand the ideomotor effect.) Lutz describes an autistic child who communicates by pointing at a letter board. Some autistic people authentically do this without controversy; the trouble starts when someone else is manipulating their hands. This particular child wasn’t guided in that way, and yet their communication proved to be illusory as well - they could only form coherent messages when one of the parents was holding the board that they touched. If the board was placed in a fixed position or held by someone else, nothing they produced made any sense. Yet proponents of FC refuse to acknowledge the obvious implications of such a thing.
This is, of course, all quite sad. The parents who are trying to reach their children through FC could not possibly be more sympathetic. And though I think the huge corpus of research demonstrating that it doesn’t work should convince FC facilitators to drop it, I also understand that many of them are true believers who do what they do out of a sincere desire to help nonverbal kids communicate. Their effect in the world, however, is destructive. There are some people out there who acknowledge that FC is a matter of complex wishful thinking but ask, in effect, what the harm is. There’s the pragmatic and the more philosophical answers to that question. The pragmatic answer is that the subconscious manipulations of facilitators can have very dramatic effects. In FC’s heyday, profoundly autistic children began “accusing” their parents of sexual abuse through their facilitators at astonishing rates. As Lutz documents, dozens and dozens of heretofore nonverbal kids took advantage of their newfound communicative ability by supposedly claiming that they had been molested. Given that FC was still rather rare and the baseline population of profoundly autistic children small, this suggested a rate of parental sexual abuse that was astonishingly high. In order to demonstrate their innocence, many parents who had recently championed FC were forced to challenge its validity, helping inspire the wave of research that debunked it. This must have been excruciating for them.
Speaking to the deeper philosophical sense of why it’s wrong to humor the pleasant fiction of facilitated communication, beyond the fact that we should tell the truth, Lutz is eloquent.
FC is not a parlor game or a research project, but a “pseudoscience” or even a “pathological science” that poses multiple and significant risks to an extraordinarily vulnerable population. The worst harm isn’t the false abuse allegations that have resulted in users being removed from their families, or even the very real abuse has been justified with FC…. Nor is the worst harm the expense - although it is tremendous, in both dollars and time…. No, the worst harm of all is that FC hijacks the (albeit limited and very fragile) agency of profoundly disabled individuals…. Ultimately, it’s this unwitting ventriloquism that marks FC not only as bad practice but, more fundamentally, an abuse of human rights.
If you’d like to get a sense of the destruction facilitated communication is capable of, you might consider Gigi Jordan. While practicing FC with her 8-year-old nonverbal son, “he” “told” her that he wanted to die, and she obliged by feeding him pills until he died. She later suffocated herself to death before she could be jailed. Is that extreme and a vestige of much deeper problems with that particular woman? Sure. But it also speaks to the profound danger of allowing people to substitute their own subconscious voice for that of someone with a serious disability. Facilitated communication is a dangerous fraud that must be opposed. But to oppose it, we have to have the courage to stand up to people who think that they can throw the word “ableist” around and get whatever they want. I invite you to join me in saying without apology that, however great the pain of parents of profoundly autistic children, humoring the fantasy that facilitated communication represents is not the solution. There can be no ambiguity: facilitated communication does not work. And not a single dime of taxpayer money should be spent on discredited, destructive pseudoscience.
Lutz’s book is, as I said, academic. I think many readers who aren’t used to academic publishing will find the going a little slow, even for a slight book at 130 pages. This is necessary, however, for Lutz to carefully go through the evidence she brings to bear, particularly in her patient work looking at how the memoirs written by the parents of autistic children helped to cement the “intact mind” attitude into public consciousness. And the whole book is suffused with sadness, a mother’s sadness and an advocate’s sadness. Lutz has taken a great deal of heat in her career, from predictable sources. I can’t imagine that she wants to be known as an enemy of the disability rights movement, and I’m guessing she would much rather simply advocate for disabled people like her son. Personally, I’m very happy to have this fight, I think it's a vital one, and I’m lucky to enjoy the benefit of the wisdom and guidance of Lutz’s new book.
November 19, 2023
I MUST rate this book 5 stars because if I don’t, I’d be shooting my son with severe autism and my family in the foot. This is the first book of its kind- and I hope that it will be followed by many other books and articles that describe the poor state of services and the erosion of choices in services for those individuals with severe and profound autism.
This book will sell to families of individuals with severe autism, but it really won’t have the desired effect if it does not reach policymakers and the general public. We need to change the public perception of the state of affairs for those with severe autism. Lutz deserves credit for publishing the first book of this sort. I have no doubt that she will be bullied for expressing her frank opinions.
The best parts of the Lutz book are the three chapters at the end of the book. These are the chapters on 14c or sheltered workshops, erosion of guardianship, and on the resurgence of facilitated communication. Lutz stated many facts that I did not know about the history of these three issues. All of her positions were well documented and footnoted. She talks a lot about using objective means and science to determine what works rather than relying on ideology and values alone.
Similar to Lutz’s previous books, she philosophizes quite a bit. Some readers like this, some don’t. The first part of the book discusses her theory that the dearth of services for those with severe autism stems from a popular, but untrue and unproven belief. This belief is that underneath the individual's bizarre behavior is an intact mind. But sadly, this is not something that is based on reality for most individuals diagnosed with severe/profound autism.
This book will sell to families of individuals with severe autism, but it really won’t have the desired effect if it does not reach policymakers and the general public. We need to change the public perception of the state of affairs for those with severe autism. Lutz deserves credit for publishing the first book of this sort. I have no doubt that she will be bullied for expressing her frank opinions.
The best parts of the Lutz book are the three chapters at the end of the book. These are the chapters on 14c or sheltered workshops, erosion of guardianship, and on the resurgence of facilitated communication. Lutz stated many facts that I did not know about the history of these three issues. All of her positions were well documented and footnoted. She talks a lot about using objective means and science to determine what works rather than relying on ideology and values alone.
Similar to Lutz’s previous books, she philosophizes quite a bit. Some readers like this, some don’t. The first part of the book discusses her theory that the dearth of services for those with severe autism stems from a popular, but untrue and unproven belief. This belief is that underneath the individual's bizarre behavior is an intact mind. But sadly, this is not something that is based on reality for most individuals diagnosed with severe/profound autism.
December 20, 2023
I absolutely love this book!
But let’s start at the beginning. I kicked off the week with the book Far from the Tree by Andrew Solomon. I won’t bore you with the details, but in the first chapter titled, ‘Son,’ the author talks about identity and, in the way I interpreted it, diagnosis. The term “defective” has long-tailed behind most diagnoses, conditions, illnesses, or marked differences from the norm. Yet, whatever illness that may be could very well become the basis for a person’s identity. Andrew Solomon wrote that “many conditions are both illness and identity, but we can see one only when we obscure the other. Identity politics refutes the idea of illness, while medicine short changes identity.”
I didn't realize how reading Solomon’s book set the backstage for Lutz’s book. Lutz expounds upon the identity dichotomy explained by Solomon to explain the history of the diagnosis of autism and how people with profound autism have been excluded from any policy, treatment, or conversation. If I were asked to write just one lesson from the book, then it would be this:
Two things can be true: a person with a diagnosis of autism can live independently, and a person with the same diagnosis might need 24-hour supervision and care for the rest of their lives. There are both impaired and intact minds on the spectrum. So whatever side of the spectrum a person falls on, there needs to be resources to help both the individual and their family members.
But I digress; this is, after all, a review too. I don’t have a template for reviewing non-fiction (nor do I want one, as I don't plan to make this a habit), so I will review this loosely, like an academic article. And to be clear, this is a huge compliment to Lutz. Her book is incredibly well-researched, written, and referenced. Lutz weaves in the history of the diagnosis with existing research and legislation. She also interviewed people and included statements and quotes from many of the interviewees to give a very detailed account of the challenges facing adults and families of adults with profound autism. Lutz also does a fantastic job addressing both arguments for the three policy case studies.
There are two parts of the book; I am partial to the second half than the first. The first half is similar to an academic literature review, while the second half is the policy argument. The first half details “The History of the Intact Mind.” This title is a misnomer. Lutz explains that it is coined from the idea that within the body of an autistic child is a “normal” child or an “intact mind” waiting to get out or be discovered. On a personal note, I find the idea of an intact mind problematic because it negates the personal identity of autistic adults. It forces people to conform to a neurotypical idea of life and function to be loveable, accepted, and considered human. Everything in my being rages against this. But again, I digress.
This quest to find an intact mind became the hope many parents of children on the spectrum held. Having combed through hundreds of memoirs, Lutz details accounts that start with a diagnosis of autism and, perhaps, symptoms of severe autism, where through interventions are treatments, some verified by science, some with no validity, and some people have beaten autism. By that, I mean that the individual diagnosed later in life seems to no longer exhibit any symptoms of autism. The downside of this, as Amy discusses, brings me to the lyrics of an old song, “What happens when the healing never comes?”
I do not at this time want to take away from the identity that many have embraced in being autistic or family members of a person on the spectrum. There are symptoms of severe autism that are so heartbreaking —self-injury, chewing inedible objects, elopement, aggression, and violence— that parents do pray for healing. Parents do try all kinds of treatments… not to cure or detract from the identity or the empowerment of the autism movement, but to connect emotionally to their children or even keep them from physical harm.
In one of the chapters, Lutz discusses how she feels about facilitated communication. There, she imagines how she would talk to her son Jonah beyond what she described as their “scripted” conversation, containing but a few words and phrases. Imagines how she would discuss literature, politics, and other interests. The sheer hope that she might relate to her son on the level had her considering the largely scientifically debunked facilitated communication. Yet, the reality of a dangerous hope of such an “intact mind” is that it has led to numerous cases of abuse and led many caregivers to treat their charges no more than “puppets” while ignoring their very real avenues of communication or contextual cues. Many unproven treatment has led to increasing abuse, trauma, dehumanization, and violation of rights for adults with severe autism.
Additionally, the drive to chase an intact mind has led to policy changes in the disability world that largely ignore the needs of adults with severe autism, such as the phasing out of 14(c) employments. As Lutz wrote, “The debate is not about whether all disabled adults should be forced into workshops —it is about whether all disabled adults should be forced out of them.” Those whom the phasing out of 14(c) would be affected are those who would face significant barriers to competitive employment. Those with severe autism.
I can go on about this book, but you should totally read it… even if only to disagree with Lutz. However, this brings me to a crucial point as I read this book. For those who believe, the hope that some intact mind can be found is so powerful. The memoirs of people who have discovered the intact minds of family members are just so beautiful. One of my favorite writers wrote that the most dangerous thing you can take away from someone is to take away their hope. So, while I love this book and the conclusion, I almost feel this dread.
Over the course of Jonah’s life, Lutz has realized that perhaps this is her reality. If you would permit me to go back to Andrew Solomon’s book one moment… then being Jonah’s mum is a primary part of Lutz’s identity. For those who have yet to adopt this identity, whose next turn is the next hyped procedure, technology, medication, or treatment, to find an intact mind. How do you tell them to stop trying? What goes in place of that hope that gets them up each morning? Or perhaps I have misunderstood the entirety of this book. So maybe a better question is, is Lutz even telling them to stop trying?
It still comes down to these two things. For those for whom a condition is an illness, there is no end to the search for an intact mind. For those for whom it is an identity, there is no need for experimental treatments. The weaponization of identity and empowerment rhetoric erases any evidence to the contrary that anyone might perhaps need more help. The presumption of competence and the assumption of incompetence. Easy guardianship laws have led to exploitation and abuse, and harder laws have caused many families to feel helpless in decision-making progress. That none of this should be a zero-sum game should be obvious, but the reality is that people are excluded. In this case, adults with severe autism.
But let’s start at the beginning. I kicked off the week with the book Far from the Tree by Andrew Solomon. I won’t bore you with the details, but in the first chapter titled, ‘Son,’ the author talks about identity and, in the way I interpreted it, diagnosis. The term “defective” has long-tailed behind most diagnoses, conditions, illnesses, or marked differences from the norm. Yet, whatever illness that may be could very well become the basis for a person’s identity. Andrew Solomon wrote that “many conditions are both illness and identity, but we can see one only when we obscure the other. Identity politics refutes the idea of illness, while medicine short changes identity.”
I didn't realize how reading Solomon’s book set the backstage for Lutz’s book. Lutz expounds upon the identity dichotomy explained by Solomon to explain the history of the diagnosis of autism and how people with profound autism have been excluded from any policy, treatment, or conversation. If I were asked to write just one lesson from the book, then it would be this:
Two things can be true: a person with a diagnosis of autism can live independently, and a person with the same diagnosis might need 24-hour supervision and care for the rest of their lives. There are both impaired and intact minds on the spectrum. So whatever side of the spectrum a person falls on, there needs to be resources to help both the individual and their family members.
But I digress; this is, after all, a review too. I don’t have a template for reviewing non-fiction (nor do I want one, as I don't plan to make this a habit), so I will review this loosely, like an academic article. And to be clear, this is a huge compliment to Lutz. Her book is incredibly well-researched, written, and referenced. Lutz weaves in the history of the diagnosis with existing research and legislation. She also interviewed people and included statements and quotes from many of the interviewees to give a very detailed account of the challenges facing adults and families of adults with profound autism. Lutz also does a fantastic job addressing both arguments for the three policy case studies.
There are two parts of the book; I am partial to the second half than the first. The first half is similar to an academic literature review, while the second half is the policy argument. The first half details “The History of the Intact Mind.” This title is a misnomer. Lutz explains that it is coined from the idea that within the body of an autistic child is a “normal” child or an “intact mind” waiting to get out or be discovered. On a personal note, I find the idea of an intact mind problematic because it negates the personal identity of autistic adults. It forces people to conform to a neurotypical idea of life and function to be loveable, accepted, and considered human. Everything in my being rages against this. But again, I digress.
This quest to find an intact mind became the hope many parents of children on the spectrum held. Having combed through hundreds of memoirs, Lutz details accounts that start with a diagnosis of autism and, perhaps, symptoms of severe autism, where through interventions are treatments, some verified by science, some with no validity, and some people have beaten autism. By that, I mean that the individual diagnosed later in life seems to no longer exhibit any symptoms of autism. The downside of this, as Amy discusses, brings me to the lyrics of an old song, “What happens when the healing never comes?”
I do not at this time want to take away from the identity that many have embraced in being autistic or family members of a person on the spectrum. There are symptoms of severe autism that are so heartbreaking —self-injury, chewing inedible objects, elopement, aggression, and violence— that parents do pray for healing. Parents do try all kinds of treatments… not to cure or detract from the identity or the empowerment of the autism movement, but to connect emotionally to their children or even keep them from physical harm.
In one of the chapters, Lutz discusses how she feels about facilitated communication. There, she imagines how she would talk to her son Jonah beyond what she described as their “scripted” conversation, containing but a few words and phrases. Imagines how she would discuss literature, politics, and other interests. The sheer hope that she might relate to her son on the level had her considering the largely scientifically debunked facilitated communication. Yet, the reality of a dangerous hope of such an “intact mind” is that it has led to numerous cases of abuse and led many caregivers to treat their charges no more than “puppets” while ignoring their very real avenues of communication or contextual cues. Many unproven treatment has led to increasing abuse, trauma, dehumanization, and violation of rights for adults with severe autism.
Additionally, the drive to chase an intact mind has led to policy changes in the disability world that largely ignore the needs of adults with severe autism, such as the phasing out of 14(c) employments. As Lutz wrote, “The debate is not about whether all disabled adults should be forced into workshops —it is about whether all disabled adults should be forced out of them.” Those whom the phasing out of 14(c) would be affected are those who would face significant barriers to competitive employment. Those with severe autism.
I can go on about this book, but you should totally read it… even if only to disagree with Lutz. However, this brings me to a crucial point as I read this book. For those who believe, the hope that some intact mind can be found is so powerful. The memoirs of people who have discovered the intact minds of family members are just so beautiful. One of my favorite writers wrote that the most dangerous thing you can take away from someone is to take away their hope. So, while I love this book and the conclusion, I almost feel this dread.
Over the course of Jonah’s life, Lutz has realized that perhaps this is her reality. If you would permit me to go back to Andrew Solomon’s book one moment… then being Jonah’s mum is a primary part of Lutz’s identity. For those who have yet to adopt this identity, whose next turn is the next hyped procedure, technology, medication, or treatment, to find an intact mind. How do you tell them to stop trying? What goes in place of that hope that gets them up each morning? Or perhaps I have misunderstood the entirety of this book. So maybe a better question is, is Lutz even telling them to stop trying?
It still comes down to these two things. For those for whom a condition is an illness, there is no end to the search for an intact mind. For those for whom it is an identity, there is no need for experimental treatments. The weaponization of identity and empowerment rhetoric erases any evidence to the contrary that anyone might perhaps need more help. The presumption of competence and the assumption of incompetence. Easy guardianship laws have led to exploitation and abuse, and harder laws have caused many families to feel helpless in decision-making progress. That none of this should be a zero-sum game should be obvious, but the reality is that people are excluded. In this case, adults with severe autism.
September 3, 2025
I didn't expect so much of this book to be about autism memoirs, but the author did the fundamental job of making the subject interesting, so I enjoyed even the first half.
A good example of why I usually don't skim or skip: I thought the chapter on facilitated communication would be mostly known, and sure, it had some familiar facts (obviously it has to mention Anna Stubblefield, for instance), but many sections were new and the appeal about how FC can erase real volition was one of the most striking parts of the book for me.
If I have any complaint, it's that the book doesn't ultimately cover its subtitle. It describes the status quo and makes an impassioned plea for a different system of care, but what little we learn about the "how" seems very difficult to change.
A good example of why I usually don't skim or skip: I thought the chapter on facilitated communication would be mostly known, and sure, it had some familiar facts (obviously it has to mention Anna Stubblefield, for instance), but many sections were new and the appeal about how FC can erase real volition was one of the most striking parts of the book for me.
If I have any complaint, it's that the book doesn't ultimately cover its subtitle. It describes the status quo and makes an impassioned plea for a different system of care, but what little we learn about the "how" seems very difficult to change.
December 22, 2023
A book for everyone who has an opinion about society's responsibility toward the severely mentally disabled, their care, autonomy and tge miscobceptions that are built on hope instead of data and the realities that teir caregivers face. Excellent
October 2, 2025
The book's title references the common idea that "inside" an intellectually disabled and/or Autistic person is a "normal" person "wanting to get out." The main message I took away was the author's desire to advocate that disabled people don't have to have any other capacity "hidden inside" to be valid and deserving of effective supports for their unique needs. (Well, of course! But much of society prefers for people to have some redeeming feature to balance out their disability, so it bears saying.)
The book has two sections: one is a review of "Autism parent" memoirs with regard to this theme, and the second is about policies that affect people with intellectual and developmental disabilities (IDD) that have been impacted by others' perspectives on that theme in the areas of policy and practice.
The author's perspective is as a parent of a high support needs (HSN) Autistic child. I appreciated that they took a thoughtful, critical view of the memoirs they reviewed rather than folding into the "rescue" narrative. In the second part, the author similarly showed a thoughtful, critical view of the Neurodiversity (ND) Movement's influences on policy and practice with regard to key areas (i.e., work, housing, guardianship, and communication supports). Although I was initially concerned that it would be biased, I found the critical lens on the ND movement valuable because it adds nuance to my understanding of issues faced by HSN folks in particular. I think it was a reasonable take.
I come away from this read with a sense that the ND movement's narrative may not represent HSN folks as well as I would hope. "Nothing about us without us," as we say--but with the added nuance that "us" includes such a wide array of people that we need to be cautious to account for the diversity within our diversity. I plan to look for more (affirming) ways to learn about HSN perspectives and ID in general. I suspect due to power dynamics as well as dis/abilities, it may be difficult to find self-advocacy from their own perspectives for those who don't write--but the only way I'll find out is by looking.
There was an interesting bit about "presuming competence," which I think needed more nuance. The author takes a dissuading stance on this principle of the ND movement, saying it promotes advocacy for removal of valued supports due to the view that they are unnecessarily restrictive (this is where the ND movement partakes in the "intact mind" narrative). The author seems to view competence as equivalent to cognitive capacities, and I think this is where the problem lies. I think it would be better to interpret competence in the context of each person, including non-cognitive forms of competence. One example is stimming: it has been traditionally called stereotypy, which is by definition considered purposeless. However, even harmful stims can indicate a person's embodied (non-cognitive, non-verbal, non-conscious) competence in seeking to meet their real sensory needs (this has been true for folks of lower/moderate support needs, and I believe it may also apply for higher support needs cases, though I will look to check this when I learn more from HSN folks). Similarly, when someone socializes in Autistic ways that allistics dismiss, such as echolalia (traditionally considered meaningless but now known to be meaningful), they are demonstrating competence in Autistic interpersonal connection or self-expression. Just because others don't understand a behavior (the double empathy problem), and the person can't explain it, doesn't mean it is coming from incompetence. It may just be that the definition of competence needs to be understood more broadly, (without over-extending it to the point of harm).
The book has two sections: one is a review of "Autism parent" memoirs with regard to this theme, and the second is about policies that affect people with intellectual and developmental disabilities (IDD) that have been impacted by others' perspectives on that theme in the areas of policy and practice.
The author's perspective is as a parent of a high support needs (HSN) Autistic child. I appreciated that they took a thoughtful, critical view of the memoirs they reviewed rather than folding into the "rescue" narrative. In the second part, the author similarly showed a thoughtful, critical view of the Neurodiversity (ND) Movement's influences on policy and practice with regard to key areas (i.e., work, housing, guardianship, and communication supports). Although I was initially concerned that it would be biased, I found the critical lens on the ND movement valuable because it adds nuance to my understanding of issues faced by HSN folks in particular. I think it was a reasonable take.
I come away from this read with a sense that the ND movement's narrative may not represent HSN folks as well as I would hope. "Nothing about us without us," as we say--but with the added nuance that "us" includes such a wide array of people that we need to be cautious to account for the diversity within our diversity. I plan to look for more (affirming) ways to learn about HSN perspectives and ID in general. I suspect due to power dynamics as well as dis/abilities, it may be difficult to find self-advocacy from their own perspectives for those who don't write--but the only way I'll find out is by looking.
There was an interesting bit about "presuming competence," which I think needed more nuance. The author takes a dissuading stance on this principle of the ND movement, saying it promotes advocacy for removal of valued supports due to the view that they are unnecessarily restrictive (this is where the ND movement partakes in the "intact mind" narrative). The author seems to view competence as equivalent to cognitive capacities, and I think this is where the problem lies. I think it would be better to interpret competence in the context of each person, including non-cognitive forms of competence. One example is stimming: it has been traditionally called stereotypy, which is by definition considered purposeless. However, even harmful stims can indicate a person's embodied (non-cognitive, non-verbal, non-conscious) competence in seeking to meet their real sensory needs (this has been true for folks of lower/moderate support needs, and I believe it may also apply for higher support needs cases, though I will look to check this when I learn more from HSN folks). Similarly, when someone socializes in Autistic ways that allistics dismiss, such as echolalia (traditionally considered meaningless but now known to be meaningful), they are demonstrating competence in Autistic interpersonal connection or self-expression. Just because others don't understand a behavior (the double empathy problem), and the person can't explain it, doesn't mean it is coming from incompetence. It may just be that the definition of competence needs to be understood more broadly, (without over-extending it to the point of harm).
March 22, 2025
I absolutely love this book!
But let’s start at the beginning. I kicked off the week with the book Far from the Tree by Andrew Solomon. I won’t bore you with the details, but in the first chapter titled, ‘Son,’ the author talks about identity and, in the way I interpreted it, diagnosis. The term “defective” has long-tailed behind most diagnoses, conditions, illnesses, or marked differences from the norm. Yet, whatever illness that may be could very well become the basis for a person’s identity. Andrew Solomon wrote that “many conditions are both illness and identity, but we can see one only when we obscure the other. Identity politics refutes the idea of illness, while medicine short changes identity.”
I didn't realize how reading Solomon’s book set the backstage for Lutz’s book. Lutz expounds upon the identity dichotomy explained by Solomon to explain the history of the diagnosis of autism and how people with profound autism have been excluded from any policy, treatment, or conversation. If I were asked to write just one lesson from the book, then it would be this:
Two things can be true: a person with a diagnosis of autism can live independently, and a person with the same diagnosis might need 24-hour supervision and care for the rest of their lives. There are both impaired and intact minds on the spectrum. So whatever side of the spectrum a person falls on, there needs to be resources to help both the individual and their family members.
But I digress; this is, after all, a review too. I don’t have a template for reviewing non-fiction (nor do I want one, as I don't plan to make this a habit), so I will review this loosely, like an academic article. And to be clear, this is a huge compliment to Lutz. Her book is incredibly well-researched, written, and referenced. Lutz weaves in the history of the diagnosis with existing research and legislation. She also interviewed people and included statements and quotes from many of the interviewees to give a very detailed account of the challenges facing adults and families of adults with profound autism. Lutz also does a fantastic job addressing both arguments for the three policy case studies.
There are two parts of the book; I am partial to the second half than the first. The first half is similar to an academic literature review, while the second half is the policy argument. The first half details “The History of the Intact Mind.” This title is a misnomer. Lutz explains that it is coined from the idea that within the body of an autistic child is a “normal” child or an “intact mind” waiting to get out or be discovered. On a personal note, I find the idea of an intact mind problematic because it negates the personal identity of autistic adults. It forces people to conform to a neurotypical idea of life and function to be loveable, accepted, and considered human. Everything in my being rages against this. But again, I digress.
This quest to find an intact mind became the hope many parents of children on the spectrum held. Having combed through hundreds of memoirs, Lutz details accounts that start with a diagnosis of autism and, perhaps, symptoms of severe autism, where through interventions and treatments —some verified by science, some with no validity—some people have beaten autism. By that, I mean that the individual diagnosed with autism at a young age, with those interventions, as they age seem to no longer exhibit any symptoms of autism. The downside of this, as Amy discusses, brings me to the lyrics of an old song, “What happens when the healing never comes?”
I do not at this time want to take away from the identity that many have embraced in being autistic or family members of a person on the spectrum. There are symptoms of severe autism that are so heartbreaking —self-injury, chewing inedible objects, elopement, aggression, and violence— that parents do pray for healing. Parents do try all kinds of treatments… not to cure or detract from the identity or the empowerment of the autism movement, but to connect emotionally to their children or even keep them from physical harm.
In one of the chapters, Lutz discusses how she feels about facilitated communication. There, she imagines how she would talk to her son Jonah beyond what she described as their “scripted” conversation, containing but a few words and phrases. Imagines how she would discuss literature, politics, and other interests. The sheer hope that she might relate to her son on that level had her considering the largely scientifically debunked facilitated communication. Yet, the reality of a dangerous hope/pursuit of an “intact mind” is that it has led to numerous cases of abuse and led many caregivers to treat their charges as no more than “puppets” while ignoring their very real avenues of communication or contextual cues. Many unproven treatment has led to increasing abuse, trauma, dehumanization, and violation of rights for adults with severe autism.
Additionally, the drive to chase an intact mind has led to policy changes in the disability world that largely ignore the needs of adults with severe autism, such as the phasing out of 14(c) employments. As Lutz wrote, “The debate is not about whether all disabled adults should be forced into workshops —it is about whether all disabled adults should be forced out of them.” Those whom the phasing out of 14(c) would be affected are those who would face significant barriers to competitive employment. Those with severe autism.
I can go on about this book, but you should totally read it… even if only to disagree with Lutz. However, this brings me to a crucial point as I read this book. For those who believe, the hope that some intact mind can be found is so powerful. The memoirs of people who have discovered the intact minds of family members are just so beautiful. One of my favorite writers wrote that the most dangerous thing you can take away from someone is to take away their hope. So, while I love this book and the conclusion, I almost feel this dread inside.
Over the course of Jonah’s life, Lutz has realized that perhaps this is her reality. If you would permit me to go back to Andrew Solomon’s book one moment… then being Jonah’s mum is a primary part of Lutz’s identity. For those who have yet to adopt this identity, whose next turn is the next hyped procedure, technology, medication, or treatment, to find an intact mind. How do you tell them to stop trying? What goes in place of that hope that gets them up each morning? Or perhaps I have misunderstood the entirety of this book. So maybe a better question is, is Lutz even telling them to stop trying?
It still comes down to these two things. For those for whom a condition is an illness, there is no end to the search for an intact mind. For those for whom it is an identity, there is no need for experimental treatments. The weaponization of identity and empowerment rhetoric erases any evidence to the contrary that anyone might perhaps need more help. The presumption of competence and the assumption of incompetence. Easy guardianship laws have led to exploitation and abuse, and harder laws have caused many families to feel helpless in decision-making progress. That none of this should be a zero-sum game should be obvious, but the reality is that people are excluded. In this case, adults with severe autism.
But let’s start at the beginning. I kicked off the week with the book Far from the Tree by Andrew Solomon. I won’t bore you with the details, but in the first chapter titled, ‘Son,’ the author talks about identity and, in the way I interpreted it, diagnosis. The term “defective” has long-tailed behind most diagnoses, conditions, illnesses, or marked differences from the norm. Yet, whatever illness that may be could very well become the basis for a person’s identity. Andrew Solomon wrote that “many conditions are both illness and identity, but we can see one only when we obscure the other. Identity politics refutes the idea of illness, while medicine short changes identity.”
I didn't realize how reading Solomon’s book set the backstage for Lutz’s book. Lutz expounds upon the identity dichotomy explained by Solomon to explain the history of the diagnosis of autism and how people with profound autism have been excluded from any policy, treatment, or conversation. If I were asked to write just one lesson from the book, then it would be this:
Two things can be true: a person with a diagnosis of autism can live independently, and a person with the same diagnosis might need 24-hour supervision and care for the rest of their lives. There are both impaired and intact minds on the spectrum. So whatever side of the spectrum a person falls on, there needs to be resources to help both the individual and their family members.
But I digress; this is, after all, a review too. I don’t have a template for reviewing non-fiction (nor do I want one, as I don't plan to make this a habit), so I will review this loosely, like an academic article. And to be clear, this is a huge compliment to Lutz. Her book is incredibly well-researched, written, and referenced. Lutz weaves in the history of the diagnosis with existing research and legislation. She also interviewed people and included statements and quotes from many of the interviewees to give a very detailed account of the challenges facing adults and families of adults with profound autism. Lutz also does a fantastic job addressing both arguments for the three policy case studies.
There are two parts of the book; I am partial to the second half than the first. The first half is similar to an academic literature review, while the second half is the policy argument. The first half details “The History of the Intact Mind.” This title is a misnomer. Lutz explains that it is coined from the idea that within the body of an autistic child is a “normal” child or an “intact mind” waiting to get out or be discovered. On a personal note, I find the idea of an intact mind problematic because it negates the personal identity of autistic adults. It forces people to conform to a neurotypical idea of life and function to be loveable, accepted, and considered human. Everything in my being rages against this. But again, I digress.
This quest to find an intact mind became the hope many parents of children on the spectrum held. Having combed through hundreds of memoirs, Lutz details accounts that start with a diagnosis of autism and, perhaps, symptoms of severe autism, where through interventions and treatments —some verified by science, some with no validity—some people have beaten autism. By that, I mean that the individual diagnosed with autism at a young age, with those interventions, as they age seem to no longer exhibit any symptoms of autism. The downside of this, as Amy discusses, brings me to the lyrics of an old song, “What happens when the healing never comes?”
I do not at this time want to take away from the identity that many have embraced in being autistic or family members of a person on the spectrum. There are symptoms of severe autism that are so heartbreaking —self-injury, chewing inedible objects, elopement, aggression, and violence— that parents do pray for healing. Parents do try all kinds of treatments… not to cure or detract from the identity or the empowerment of the autism movement, but to connect emotionally to their children or even keep them from physical harm.
In one of the chapters, Lutz discusses how she feels about facilitated communication. There, she imagines how she would talk to her son Jonah beyond what she described as their “scripted” conversation, containing but a few words and phrases. Imagines how she would discuss literature, politics, and other interests. The sheer hope that she might relate to her son on that level had her considering the largely scientifically debunked facilitated communication. Yet, the reality of a dangerous hope/pursuit of an “intact mind” is that it has led to numerous cases of abuse and led many caregivers to treat their charges as no more than “puppets” while ignoring their very real avenues of communication or contextual cues. Many unproven treatment has led to increasing abuse, trauma, dehumanization, and violation of rights for adults with severe autism.
Additionally, the drive to chase an intact mind has led to policy changes in the disability world that largely ignore the needs of adults with severe autism, such as the phasing out of 14(c) employments. As Lutz wrote, “The debate is not about whether all disabled adults should be forced into workshops —it is about whether all disabled adults should be forced out of them.” Those whom the phasing out of 14(c) would be affected are those who would face significant barriers to competitive employment. Those with severe autism.
I can go on about this book, but you should totally read it… even if only to disagree with Lutz. However, this brings me to a crucial point as I read this book. For those who believe, the hope that some intact mind can be found is so powerful. The memoirs of people who have discovered the intact minds of family members are just so beautiful. One of my favorite writers wrote that the most dangerous thing you can take away from someone is to take away their hope. So, while I love this book and the conclusion, I almost feel this dread inside.
Over the course of Jonah’s life, Lutz has realized that perhaps this is her reality. If you would permit me to go back to Andrew Solomon’s book one moment… then being Jonah’s mum is a primary part of Lutz’s identity. For those who have yet to adopt this identity, whose next turn is the next hyped procedure, technology, medication, or treatment, to find an intact mind. How do you tell them to stop trying? What goes in place of that hope that gets them up each morning? Or perhaps I have misunderstood the entirety of this book. So maybe a better question is, is Lutz even telling them to stop trying?
It still comes down to these two things. For those for whom a condition is an illness, there is no end to the search for an intact mind. For those for whom it is an identity, there is no need for experimental treatments. The weaponization of identity and empowerment rhetoric erases any evidence to the contrary that anyone might perhaps need more help. The presumption of competence and the assumption of incompetence. Easy guardianship laws have led to exploitation and abuse, and harder laws have caused many families to feel helpless in decision-making progress. That none of this should be a zero-sum game should be obvious, but the reality is that people are excluded. In this case, adults with severe autism.
August 27, 2025
I am a professional who has worked in the field of education for those with severe/profound disabilities. With more than 30 years of experience, I feel qualified to have an opinion, yet always learn new things to improve practice.
This is the reason that I picked up the book. The subtitle "How the Severaly Autistic and Intellectually Disabled were excluded from the debates that affect them most".
While interesting, I do not believe that the book accurately represented that goal. The author covers the topics 1. elimination of sheltered workshops 2. issues related to guardianship of individuals who are unable to positively make life decisions, and 3. facilitated communication. Nothing else was discussed, although we all know that there are many issues that impact this population of people. The book is very limited in scope.
The author has a definite viewpoint and opinion on each topics and while I even agree with the author on several points, the book is persuasive in nature, not equal information about both sides of the issue.
I did enjoy the book and would recommend it to those involved in the field. However, it was very different than I anticipated and quite opinionated about one side of each of the three issues discussed.
Did I learn more? Yes.
This is the reason that I picked up the book. The subtitle "How the Severaly Autistic and Intellectually Disabled were excluded from the debates that affect them most".
While interesting, I do not believe that the book accurately represented that goal. The author covers the topics 1. elimination of sheltered workshops 2. issues related to guardianship of individuals who are unable to positively make life decisions, and 3. facilitated communication. Nothing else was discussed, although we all know that there are many issues that impact this population of people. The book is very limited in scope.
The author has a definite viewpoint and opinion on each topics and while I even agree with the author on several points, the book is persuasive in nature, not equal information about both sides of the issue.
I did enjoy the book and would recommend it to those involved in the field. However, it was very different than I anticipated and quite opinionated about one side of each of the three issues discussed.
Did I learn more? Yes.
February 24, 2024
This book could have easily been twice the length and still had more to say. I think there is a huge amount to discuss about how individuals with high support needs have been excluded from disability justice frameworks/discussion and how the language used often highlights a societal de-valuing individuals with intellectual disabilities or high support needs.
I do wish that the author spent more time synthesizing a narrative that also acknowledges the very real and valid perspectives of self-advocates (this is done to some extent, but is underdeveloped, in my opinion) and also a more explicit discussion about how macrosystemic factors create/perpetuate these problems (again, done only veeery briefly in acknowledging the neoliberal perspective that human value is somehow associated with productivity/the amount of wages or profit a person's work results in).
I do wish that the author spent more time synthesizing a narrative that also acknowledges the very real and valid perspectives of self-advocates (this is done to some extent, but is underdeveloped, in my opinion) and also a more explicit discussion about how macrosystemic factors create/perpetuate these problems (again, done only veeery briefly in acknowledging the neoliberal perspective that human value is somehow associated with productivity/the amount of wages or profit a person's work results in).
February 6, 2024
As someone who has lived with a disability all his life, this is an interesting book. It is about how parents for those with disabilities know best. Healthcare professionals and other disability advocates often do not have the same interest in mind as the parents. Those people (the professionals and advocates) often have an unrealistic view of what disability really is.
April 22, 2024
a scholarly account of still current issues
The author provides a thorough historical account of the emergence of the romanticised intact mind and its potential dangers when it comes to providing dignified ethical support to those with cognitive impairments and intellectual disabilities in today’s care and educational system.
The author provides a thorough historical account of the emergence of the romanticised intact mind and its potential dangers when it comes to providing dignified ethical support to those with cognitive impairments and intellectual disabilities in today’s care and educational system.
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May 16, 2025some very important points, frustratingly marred by a significant amount of straw-manning and scapegoating of neurodiversity and ‘disability rights activists’, with huge diversities of opinion within those (very vague.. there’s no neurodiversity HQ afaik!) groups being ignored
April 18, 2024
Excellent, recently written book detailing the history of autism memoirs from parents 50+ years ago, as well as discussing gaps and limitations surrounding today’s culture.
October 2, 2023
Wow! This was a powerful read. I couldn't take it all in during one sitting, so took it in chunks. In fact, I expect to think about this one for a while and reread in a month or so. This book explores a bit of the history of autism, how the "blame" shifted from the frigid mother to something much more nuanced, and then explores what do we do now. For instance, what do we do with autistic adults who need additional support? Who cannot make informed decisions about themselves and their living situation? Who cannot control their violence and self harm? Autonomy of self is a basic human right. So where exactly is the line? For generations, others have decided where that line is. People were judged to be competent or not And we've all read the stories of the abuse that system created. Inclusion is a glorious word where all the autistics of the world are welcomed and able to live equally with the "normies". But the reality is that some are not and will not ever be able to live independently. What do we do to find the happy medium?
My only very minor criticism of this book is that it was dense. I wanted the info spread out a bit. But i totally respect the authors decision to keep it short. It definitely felt powerful.
My only very minor criticism of this book is that it was dense. I wanted the info spread out a bit. But i totally respect the authors decision to keep it short. It definitely felt powerful.
September 19, 2025
As parents of a 27-year-old child with severe autism, we have learned to avoid mentioning that we have child with autism because the well-meaning but misguided advice or commentary that invariably ensues is exhausting and disheartening. When a friend proffered this book to us with the comment that it is not what we might suspect, we left it on the self for a year before my wife finally gave it a chance and urged me (with uncharacteristic insistence) to read the book—so I did. The words fell like a cool shower of rain on parched earth. Someone understands.
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