Living on the Spectrum

Living on the Spectrum
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How youth on the autism spectrum negotiate the contested meanings of neurodiversity Autism is a deeply contested condition. To some, it is a devastating invader, harming children and isolating them. To others, it is an asset and a distinctive aspect of an individual’s identity. How do young people on the spectrum make sense of this conflict, in the context of their own developing identity? While most of the research on Asperger’s and related autism conditions has been conducted with individuals or in settings in which people on the spectrum are in the minority, this book draws on two years of ethnographic work in communities that bring people with Asperger’s and related conditions together. It can thus begin to explore a form of autistic culture, through attending to how those on the spectrum make sense of their conditions through shared social practices.Elizabeth Fein brings her many years of experience in both clinical psychology and psychological anthropology to analyze the connection between neuropsychological difference and culture. She argues that current medical models, which espouse a limited definition, are ill equipped to deal with the challenges of discussing autism-related conditions. Consequently, youths on the autism spectrum reach beyond medicine for their stories of difference and disorder, drawing instead on shared mythologies from popular culture and speculative fiction to conceptualize their experience of changing personhood. In moving and persuasive prose, Living on the Spectrum illustrates that young people use these stories to pioneer more inclusive understandings of what makes us who we are.

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Elizabeth Fein. Living on the Spectrum

CONTENTS

Introduction

Looping the Neuro

Autistic Presence

Clinical Ethnography

Quiet Hands, Loud Hands

Histories of Autism

About the Research

Chapter Summaries

About the Writing of This Book

1. The Summer of Adventure. I Could Write You a Kind of Low-Impact Character If You Wanted

You Can Go Hunting With a Knife and Fork

I Want to Tell You a Story

This Weird Urge to Stand Up and Say: These Are My People

The Beast of Judgment, the Dark at the End of Everything

The Little Kids Are Emo

The Theory of Extreme Awesomeness Ratio

To Dream of Heaven

2. Searching for a Place. Every Day Is a New Nightmare

We’ll Fix Her Up Real Good, Don’t Worry

We Had a Whole New Kid

You Ripped Apart My IEP

The Widening Domain of Emperor Ner

Can I Have a Half-Day?

You’ve Got to Look Out, La-La-La

Barely Special

3. Innocent Machines. It’s a Brain Developmental Thing, You Know What I Mean?

Who Are the People in Your Brainhood?

We Knew It Wasn’t Your Fault for Being Mentally Retarded

The Little Professors

The Value to Society of Someone Who Is Very Logical

They Act Out Because They’re Stressed

If You’re Not Capable, You Can’t Do It. So

It’s a Personal Decision That They Don’t Think It’s That Important

4. Hardwired. It’s Not Neurochemical, It’s Structural

Off the Cliff

Everything That ASPNET Advocates

It’s a Different Kind of Wiring

A Mac, Not a PC With a Virus

The Box That Asperger’s Comes In

Eradicated From the Face of the Earth Forever

An Organ That Never Stands Still

5. The Pathogen and the Package. A World in Which Suffering Because of Autism No Longer Exists

Divided Medicalization

A Perfect Description of Me

The Neurodevelopmental Turn

I Crumpled Up Autism and Put It in the Garbage

The Main Thing Was That It Had to Make Sense

You Are Your Connectome

Disease States Heretofore Unrecognized

A Different Pattern of Processing That Can Bring Tremendous Strengths

Very, Very Targeted Biological Treatments

We Will Know Where the Enemy Is

6. The Division of a Syndrome. Guess What I Did with the Doctor Today?

Having Fun in the Therapeutic World

Are My Friends Gonna Have to Have Two Tuberculosis Tests?

All Films Will Be Set at the Borders

I Look at Them as Someone Who Has Significant Social Impairments

The Creativity That Comes with Their Wiring Differences

They’re Not Patients If There’s Nothing Really Wrong with Them

Are You Going to Have Another Party?

7. The Dilemma of Cure. That Certain Special Thing About Trevor

I Think You Should Be Asking About Parental Relationships

We Need Special People to Spruce Shit Up

You Love the Kid for Who He Is

Quote Me as Saying I Want a Pill

I Think He’s Going to Need Help

Talking Fundamentally About What Is a Person

He Would Love It If He Had a Friend

8. The Sword in the Soul. Three Stories About Autism

A Lot of It Is What I See as Myself

Now That I’m With the History

Unearthing, Representing, Dividing

The Double-Edged Sword

It’s a Part of Me, They Don’t Know Where It Came From

Going Demon

Permeable Narratives, Permeable Personhoods

Conclusion

You Can Make Something

We Put Duct Tape on It So No One Gets Burned

Strength Comes in Numbers

Cleaning Up Social Town

Ad Astra, per Aspera

ACKNOWLEDGMENTS

NOTES. INTRODUCTION

CHAPTER 1. THE SUMMER OF ADVENTURE

CHAPTER 2. SEARCHING FOR A PLACE

CHAPTER 3. INNOCENT MACHINES

CHAPTER 4. HARDWIRED

CHAPTER 5. THE PATHOGEN AND THE PACKAGE

CHAPTER 6. THE DIVISION OF A SYNDROME

CHAPTER 7. THE DILEMMA OF CURE

CHAPTER 8. THE SWORD IN THE SOUL

REFERENCES

INDEX

ABOUT THE AUTHOR

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