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Chasing the Intact Mind: How the Severely Autistic and Intellectually Disabled Were Excluded from the Debates That Affect Them Most

by Amy S. F. Lutz (Author)
4.3 4.3 out of 5 stars 15 ratings
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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.
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  1. ISBN-10
    0197683843
  2. ISBN-13
    978-0197683842
  3. Publisher
    Oxford University Press
  4. Publication date
    October 3, 2023
  5. Language
    English
  6. Dimensions
    9.53 x 0.84 x 6.45 inches
  7. Print length
    192 pages
  8. See all details
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From the Publisher

Focusing on the intact mind marginalizes those with severe disability

Traces the historical origins and trajectories of the "intact mind"

Cover

Foregrounds the imparied mind and supports the need for a diverse range of supports and services

"A must-read..." -- Lee Elizabeth Wachtel, MD

Editorial Reviews

Review

"A fascinating history. . . . brisk, stimulating reading." -- Jesse Singal, Singal-Minded

"A brilliant, tragic book" -- Freddie deBoer

"This is a fascinating book: It is forthright, it is honest, it is comprehensive, it is evidence-based. Importantly, this work tees up essential discussion of 'inclusion,' and how often it too relies on false hope, and distracts from our urgent need as a society to face the demands of guardianships and life-time supports we should be building for our autism community." -- Bryna Siegel, PhD, Founder & Executive Director, Autism Center of Northern California; Professor, Child & Adolescent Psychiatry, University of California (Ret.)

"Reading this brave, well-researched book I felt myself making a mental list of all the people to whom I'd recommend it. Lutz shows us the perilous seduction of the 'intact mind,' moving us through historic landmarks to the contested landscape in which we find ourselves today. With clarity of style and argument she shows how rhetoric transforms into policy, harming the very people those policies are meant to help. Her approach is one of deep empathy and understanding for those with severe autism, and their caregivers." -- Deborah R. Barnbaum, PhD, author of The Ethics of Autism: Among Them but Not of Them and Professor of Philosophy, Kent State University

"Amy Lutz bravely tackles the myth of the intact mind that has become so prevalent in modern autism dialogue. Lutz acknowledges that the intact mind mantra provides families critical 'high octane hope,' but also poignantly emphasizes the real-life consequences of blind adherence to dogma in terms of vastly reduced critical life opportunities for some of the most vulnerable individuals along the autism spectrum. A must-read for anyone truly committed to seeing all the faces of autism and optimizing care and long-term outcomes for everyone." -- Lee Elizabeth Wachtel, MD, Professor of Psychiatry, Johns Hopkins School of Medicine

Book Description

A comprehensive introduction to the concept of the "intact mind" and how it affects disability policy and practice.

Product details

  • Publisher ‏ : ‎ Oxford University Press (October 3, 2023)
  • Language ‏ : ‎ English
  • Hardcover ‏ : ‎ 192 pages
  • ISBN-10 ‏ : ‎ 0197683843
  • ISBN-13 ‏ : ‎ 978-0197683842
  • Item Weight ‏ : ‎ 14.7 ounces
  • Dimensions ‏ : ‎ 9.53 x 0.84 x 6.45 inches
  • Customer Reviews:
    4.3 4.3 out of 5 stars 15 ratings

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Amy S. F. Lutz

Amy S. F. Lutz

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Customer reviews

4.3 out of 5 stars
4.3 out of 5
15 global ratings

Top reviews from the United States

WEllenby
5.0 out of 5 stars A scholarly & humanistic approach to respecting our most vulnerable
Reviewed in the United States on October 30, 2023
Verified Purchase
Dr. Lutz has unearthed an astounding amount of evidence to support her assertions regarding how the autistic mind does, and doesn't, behave. Using case studies, granular research and history, she brilliantly exposes what can only be described as "ablesim" in reverse ~ that the "key" to unlocking the communicative barriers our autistic children face is itself a prejudiced assumption that autism can be easily or directly decoded if only society engages in necessary (often unproven) interventions. Underpinning this insistence is the belief that the intrinsic worth of a profoundly disabled child turns on him/her having a fundamentally "intact mind," which Lutz argues is not only demonstrably untrue but devalues the disabled mind as inherently inferior. I highly recommend this book to clinicians, parents and siblings of autistic children to challenge current trends about whether autism in its most severe form can genuinely be treated as "differently abled," what it means to prove the authenticity of independent communication and, most crucially, what we are saying to and about our children who "fail" to meet the litmus tests of "intact mind" beneath the serious brain disorder which is autism. A deeply informative read.
5 people found this helpful
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Thomas Pynchon's Child
5.0 out of 5 stars The roots of our surreal denial of severe mental disability
Reviewed in the United States on October 9, 2023
Verified Purchase
A thoroughly researched, scholarly and important book that probes many ways modern policy denies the reality of the impaired mind and functional impact of severe autism, with dire consequences for our most vulnerable citizens. As autism rates surge, we witness a weakening of the supports available. Why? In part, a collective fantasy of “the intact mind” that does not reflect anything measurably or observably or biologically true about severe autism and IDD. After a survey of parent memoirs, the book turns to three examples of how the notion of “intact mind” subverts actual needs of the severely disabled—the attack on subminimum wage employment; the attack on legal guardianship; and the rise of pseudoscientific facilitated communication. A timely and beautifully written consideration of feel-good trends that threaten the very real needs those disabled by impaired minds.
5 people found this helpful
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Jonathan Mitchell
4.0 out of 5 stars Interesting read about issues of severe autism and neurodiversity
Reviewed in the United States on September 18, 2023
Verified Purchase
This book was written in a rather pedantic tone, making the read somewhat challenging. The author seems fond of using the word "Interlocutor" for some reason (seems like more than a dozen or two times). Despite these minor problems, the book was an interesting read and gives a good synopsis of the problems facing children with severe developmental disabilities and their families. The issues discuss include subminimum wage employment and the laws covering this, conservatorships, and the very hot topic of facilitated communication. The book is clearly well-researched as the author provides a great deal of documentation of the facts in copious end notes.

Of particular interest (at least to me) the author takes the neurodiversity movement to task and all the problems with their positions on some issues.
2 people found this helpful
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Gyasi Burks-Abbott
5.0 out of 5 stars An important book and a great read.
Reviewed in the United States on November 27, 2023
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A beautifully written and thoroughly engaging book: I couldn't put it down. As an autistic self-advocate who is verbal and doesn't have an intellectual disability, I appreciated getting the perspective of someone living with a more severe form of the condition. That the perspective was that of a parent didn't make it any less valuable. I see no contradiction in endorsing this book and continuing to support neurodiversity. Both affirm the intrinsic worth of each person regardless of how their brain functions or whether they have an intact mind.
2 people found this helpful
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Amazon Customer
5.0 out of 5 stars An important book advocating for an invisible population.
Reviewed in the United States on February 11, 2024
A good piece of scholarship, and an easy read. Dr. Lutz uses evidence based data and and research with real sources to expose how cognitively impaired Americans are having supports removed because of the myth they are secretly capable.
3 people found this helpful
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Sleepless in Seattle
1.0 out of 5 stars Disappointing read
Reviewed in the United States on April 9, 2024
After read Ms. Lutz's book I'm not sure what point she is attempting to make. She uses tons of references but to what end. It sounds like we should all believe her and yet she is not the person living the experience of anyone with a disability. If a person with a disability is able to communicate robustly why is their opinion less worthy of consideration then the person with intact language and speech. How does Ms. Lutz measure intelligence if all intelligence tests are motor based? I didn't hear her speak about apraxia and this is a huge component of many nonverbal autistics. I am very disappointed with the way she misrepresented the references she claims to have investigated.
One person found this helpful
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bruce norris
5.0 out of 5 stars A great and necessary book.
Reviewed in the United States on November 14, 2023
This is a comprehensive look at the history of optimistic narratives of cognitive disability, particularly autism. and how those dealing with individuals so afflicted can be seduced by these narratives to make sense of the abyss they find themselves staring into. Highly recommend.
4 people found this helpful
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Pearl
5.0 out of 5 stars Essential reading for anyone seeking to comprehend and advocate for this underserved community
Reviewed in the United States on September 21, 2023
“Chasing the Intact Mind” is a profoundly insightful and timely book that delves into the often-overlooked issues faced by the severely autistic and intellectually disabled population. The author’s remarkable ability to illuminate the exclusion of this community from critical debates is commendable, and every chapter carries immense significance.

As a parent of an adult son with severe autism, my deepest desire is to see improved services and treatments available for all our children. I hold onto hope that we can create a better world for individuals with severe autism and our families. It is this hope that fuels my determination and keeps me motivated.

I extend my heartfelt gratitude to the author for crafting this exceptional book and for eloquently addressing our most pressing concerns, not only on behalf of our children but also for the broader community of individuals with severe autism.
8 people found this helpful
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Top reviews from other countries

Francesca
5.0 out of 5 stars a scholarly account of still current issues
Reviewed in the United Kingdom on April 22, 2024
Verified Purchase
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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