Index

AAAP (Autistic Advisory Panel),

National Autism Project 281,282

AASPIRE (Academic Autism Spec-trum Partnership in Researchand Education) 13, 133–142,307

ABA (applied behavioral analysis) ix,158, 273, 278

ableism 67, 152, 160, 197, 250, 313accessibility 114activism 5, 10, 14, 148, 266, 314

autistic, 46, 75, 116, 131, 133,134–141, 307

and autistics.org, 65, 67, 68and disability rights, vand electric shock “treatment”,

201, 203intersectional, 152

and Judge Rotenberg Center, 204neurodiversity, 35, 134–141, 155,

294, 300, 305political, 65, 72scientific, 138social justice, 150

adaptive functioning 7, 185, 187ADAPT, National 199ADHD (Attention-Deficit Hyperac-

tivity Disorder) 259, 263, 272,288, 299

ADH-L (Academic Dick Heads List)78

advocacyautism. See autism advocacyneurodiversity 155–165

AFF (Aspies for Freedom) 126–127,128, 131, 201

© The Editor(s) (if applicable) and The Author(s) 2020S. K. Kapp (ed.), Autistic Community and the Neurodiversity Movement,https://doi.org/10.1007/978-981-13-8437-0

319

320 Index

All the Weight of Our Dreams: OnLiving Racialized Autism 243,250

American Psychiatric Association 9.See also diagnosis/Diagnosticand Statistical Manual (DSM)

Americans with Disabilities Acts(1990 & 2008) 151, 172–173,198, 235

Ammerdown Centre 110Andrews, David 54, 215ANI (Autism Network International)

2, 23, 42, 109, 136, 216, 309“An Anthropologist on Mars” 89“anti-cure” perspective on autism 293anti-Judge Rotenberg Center activism

204antisocial behavior 117APANA (Autistic People Against

Neuroleptic Abuse) 12, 51–61,278

APPGA (All-Party ParliamentaryGroup on Autism) 57–58, 277

ARGH (Autism Rights GroupHighlands) 284

ASAN (Autistic Self AdvocacyNetwork). See Autistic SelfAdvocacy Network (ASAN)

“ASD in DSM-5: What the ResearchShows and Recommendationsfor Change” 181

Ashkenazy, E. 243, 244Ashton, Karen 59“Ask a Neurotypical” panel, at Autreat

35#asperger Internet Relay Chat

channel 47Asperger’s Syndrome 46, 124, 169,

214, 216, 233, 294

Aspergia 125–126, 131“Aspie Supremacism” 171assault, medical treatment as 59. See

also electric shock “treatment”AutAdvo 92, 93AutCom 97#autfriends/#autism 70–73autism

diagnostic criteria for 167–189,306

politics of, 237as response to trauma, 188severity scale for diagnosis of,

167, 175, 177, 179, 183–185,183–184, 187, 309

single unified diagnosis of, 169,171, 180

as social communication disability,249

and vaccines. See vaccines, andautism

Autism Acceptance Day/AutismAcceptance Month 12

Autism Act (2009) (UK) 15autism advocacy 11, 14, 24, 98, 157,

306, 308and Autism Speaks, 221, 228, 230

AutismAndRace.com 250autism-as-tragedy paradigm 26–27,

28, 30, 33, 34, 91, 229Autism Awareness Day 239autism diagnosis 23, 90, 167–189,

263, 296Autism Dividend, The 282“autism epidemic” 92, 94, 223, 238Autism Every Day 95, 130, 148Autism Hub 97, 126, 129–131Autism in Adulthood 140

Index 321

Autism/Neurodiversity Manifesto 3,15, 255–274

autism policy 221autism quackery 156autism research 151, 224, 229, 311,

312and dehumanization, 73ethical concerns with, 7participatory, 13, 133, 139problematic, 135

autism rights v, 1, 2, 8, 14, 305, 308Autism Society of America 12, 83,

95, 180Autism Speaks 130, 131, 221–231,

278, 279autism spectrum 9, 169, 170, 180,

185, 248, 298autism therapy ix, 6, 60autism-vaccine disinformation 158autism-vaccine litigation 96Autistica 277–281autistic activism 46, 75, 116, 131,

134–141, 307autistic culture 1, 35–37“Autistic Distinction, The” 92–93Autistic Genocide Clock v, 13,

123–131, 307autistic identity 134, 158, 201, 306Autistic Passing Project 174Autistic Pride Day 12Autistic Self Advocacy Network

(ASAN) 9, 130–131, 136,148–150, 158, 231

DSM-5 lobby-ing/recommendations by,167–189, 309

autistic space 4, 13, 35, 111–114,117, 118, 120, 121

autistic spectrum (InLv), independentliving on the 41–48, 109, 110

Autistics Speaking Day 12“autistic superiority” 73, 289autistics.org 12, 65–75, 134, 295,

307autistic traits 26, 70, 91, 120, 126,

288, 296and DSM-5, 172, 176, 185, 187,

189autoethnography 216autonomy 2, 8, 58, 198, 206, 246,

277, 305, 313Autonomy (journal) 14, 211–219,

307Autreat 12, 13, 24, 30, 35, 36, 48,

97, 216, 310and Autscape, 109, 110, 112–114

Autscape 13, 48, 109–121, 282, 292,295, 307, 310

aversives 200, 203, 205, 206“awareness” 83, 198, 238AWN (Autistic Women and Non-

Binary Network) 13, 147–154,157

BBaggs, Mel 57, 98, 158, 198, 295,

298Bartak, Lawrence 27BBS (bulletin board systems) 41, 43,

44behaviorism 58, 175, 195–196, 198,

279Berkowitz, Lori 151, 246Bettelheim, Bruno 68, 68n2biology 3, 5, 46, 225, 228, 288, 297bio-medicalization 296

322 Index

biomedical model, Western 8Birmingham, University of 57, 60,

215, 218, 280blogging 129, 134, 161, 201,

258–260Blume, Harvey 45, 47, 90Booth, Janine 268–270, 274Bovell, Virginia 58, 277Bowen, Paul 59, 60Breakstone, Savannah Logsdon 150,

151Bridging the Gaps 31, 32broad autism phenotype/broader

autistic phenotype 91, 288broader autism community vii, 15,

311Brook, Kabie 283, 284Brown, Lydia X.Z. 243, 310bullying 67, 69, 70, 119, 313Burns, Charles 110“butterfly effect” 268–269

CCAFETY (Community Alliance for

the Ethical Treatment of Youth)202

Cal (Cal Montgomery) 65, 73, 78,83, 198, 199, 295, 310

CARD (Center for Autism andRelated Disorders) ix

caregivers/caregiving 6, 311, 312Carley, Michael John 170, 181Carlock, William 26CAS (Critical Autism Studies) 9, 211,

219, 307catatonia 42, 47, 52, 55causation, of autism 25, 26, 95, 149,

155, 238, 312

environmental, 3, 6, 8, 96CBPR (Community Based Partic-

ipatory Research) 134–137,140

“challenging behaviors” 52chemical restraints 237, 307chronic illnesses 3civil rights 41, 126, 127, 129, 134,

136, 234civil rights movements 10, 66, 72,

147, 152class 3, 5, 67, 167, 171, 187, 197clinical practice 183, 189Clinton, Hillary 237–239, 306cognitive abilities/cognitive capabili-

ties 185, 309, 313cognitive demands 172, 178cognitive differences 29, 92, 93, 99,

309cognitive impacts 172, 178cognitive profiles 309cognitive variety 29, 92, 93, 99, 309Colley, Mary 214communication 3, 11, 26, 61, 98.

See also Social CommunicationDisorder (SCD)

assistive, 97nonverbal, 91social, 183, 185, 186

Communication Shutdown 12communication support 280, 282,

312compensatory model 10compliance training 198, 310conformism, social and political 47,

300context-dependence, of autistic

functioning 184co-occurring conditions 9, 259, 261

Index 323

Cook, Ian 203–204coping mechanisms/coping

skills/coping strategies 6, 8,172, 177, 178

Corbyn, Jeremy (MP) 266–267, 274cross-disability matters 1, 2, 4, 13,

131, 200, 305Cure Autism Now ixcure movement, of autism ix–x, 8. See

also “anti-cure” perspective onautism; “pro-cure” perspectiveon autism

DDalmayne, Emma 265DANDA (Developmental Adult

Neuro-Diversity Association)214

Dawson, Geraldine 224–226, 228Dawson, Michelle 83, 90, 95, 98,

295DCD (Developmental Coordination

Disorder) 258, 259, 262–264deficit model, of disability. See

medical model, of disabilitydeinstitutionalization 195Dekker, Martijn 2, 12, 109, 298, 307dementia 292Derber, Charles 287Des Roches Rosa, Shannon 155, 162,

294desegregation 66developmental disability (DD) 11,

65, 83, 85, 180, 312developmental diversity 309diagnosis/Diagnostic and Statistical

Manual (DSM) 9, 23, 42, 90,167–189, 263, 308

and critiques of the neurodiversitymovement, 295, 298, 299

disabilitydevelopmental 11, 65, 82, 83, 85,

180, 312medical model of. See medical

model, of disabilitysocial model of, 7, 11, 32, 125,

212, 217, 270, 272Disability Community Day of

Mourning 12disability rights 3, 13, 127, 130, 196,

199, 203, 212and Autistic Women and

Non-Binary Network, 150–152disability rights activism vdisability rights motto 2, 187, 214,

217disability rights movements ix, 3, 7,

11, 68, 85, 141, 234, 312and Autistic Women and

Non-Binary Network, 152disability rights paradigm 136disability rights principle 2, 187, 214,

217disability studies 3, 11, 46, 211discrimination 8, 15, 95, 153, 180,

200, 313and Autism/Neurodiversity

Manifesto, 268, 272and critiques of the neurodiversity

movement, 290, 291dispersed venues 114Divergent: when disability and

feminism collide 152“Don’t Mourn for Us” 12, 23–37,

219, 307“Don’t Speak for Us” 130

324 Index

DSM (Diagnostic and StatisticalManual) 185–189, 216

Du Bois, Terri 204Dunn, Dr. Yo 119, 281, 282–283Durbin-Westby, Paula 174dyslexia 257–258, 259, 261, 263,

265dyspraxia 258, 259, 263, 293Dyspraxia Foundation 214

Eelectric shock “treatment” 196–197,

205, 307, 311emancipatory research 135Emergence: Labeled Autistic 24–25,

27–30empathy 43, 45, 148, 174, 294empowerment 11, 97, 130, 148, 261,

311and AASPIRE, 134, 136, 137,

140, 141“entrapment” paradigm 28, 35environmental causation, of autism 3,

6, 8, 96environmental toxins, as risk factors

for autism 6“epidemic, autism” 92, 94, 223, 238epigenetics 297ethics 97, 217eugenics 7, 13, 125, 128, 131, 278“Everybody Gets Paid” principle”

247–248exclusion/exclusivity 12, 41–48, 93,

117, 125, 216, 293, 313Expanding the Promise for Indi-

viduals with Autism Act237

Exploring Diagnosis: Autism and theNeurodiversity Movement vii–ix

Fface blindness 45Facebook 258–259, 271Fair Housing Campaign 65–67FDA (Food andDrug administration)

73, 203, 205female genital mutilation (FGM) 290Fidonet 41, 44“For The Many Not The Few” 272“foundation documents” 217Frith, Uta 215Fund for Community Reparations

for Autistic People of Color’sInterdependence, Survival, andEmpowerment 251

fundraising 5, 115, 224, 229,243–244

GGeier, Mark and David 95, 97gender/gender identity 5, 112, 134,

151, 152, 243, 292, 307and DSM-5, 168, 171, 174, 187

Generation Rescue ixgenetics 93, 127, 225, 228, 296, 297Gernsbacher, Morton Ann 93“Getting the Truth Out” website 12,

83, 85, 307“Getting the Word Out” 12, 83Giggleswick School 113Gilfoy, Hilary 278, 280Grandin, Temple 23, 24–29, 30, 34,

306Grant, Kathy Xenia 30, 214

Index 325

GRASP (Global and RegionalAsperger Syndrome Partner-ship) 136, 170, 181

Greenburg, Carol 157, 159, 289Gross, Zoe 12, 174group think 300

HHaley, Boyd 93, 96Hatch, Senator Orrin 235health and safety 55, 61Hiari 294, 300“high-functioning” autism 184, 294,

308Hippocratic Oath 59human rights 1, 4, 59, 82, 134, 164,

311and electric shock “treatment”,

202, 203

IIACC (Interagency Autism Coordi-

nating Committee) 95, 139,140, 175, 230

ideasthesia 147identity politics 288–290, 291I Am Autism 131, 226, 227impairments 7, 114, 118, 163, 261,

293, 310, 312and origins of neurodiversity, 28,

32, 35inclusion/inclusivity viii, 2, 4, 7, 13,

306, 308–311, 313and AASPIRE, 137and Autism/Neurodiversity

Manifesto, 255and Autistic Genocide Clock, 131

Autistic Women and Non-BinaryNetwork (AWN), 150

and Autscape, 109, 114, 115, 117and Independent Living on the

Autistic spectrum, 46, 47and neurodiversity movement,

292, 293, 295independent living 85, 224Independent Living on the Autistic

Spectrum (InLv) 41–48, 110individual model, of disability. See

medical model, of disabilityinjustice 8, 12, 69, 71–72, 149, 266“In My Language” 85, 98, 158INSAR (International Society for

Autism Research) 229institutionalization 78, 93, 135,

195–207, 307institutions, mental 77, 78intellectual disabilities 5, 32, 60, 141,

292, 295interaction badge system 112Internet 41–43, 45, 258–260, 266intersectional activism 152intersectionality 4, 251intervention ix, 7, 8, 57, 93, 127,

206, 278, 306and DSM-5, 175, 185, 189

IRC (Internet Relay Chat) 47, 69, 70,109

ISNT (Institute for the Study of theNeurologically Typical) v, 12,73, 90

isolation 26, 27, 31, 71, 169, 197,198, 262

Israel, Matthew 196, 202“It’s Not a Term Paper” principle

248–249

326 Index

JJordan, Rita 57Judge Rotenberg Center (JRC) 3, 72,

195–197, 311justice, social 4, 10, 35, 134, 137,

141, 150, 212

KKapp, Steven 168, 299King, Jr., Martin Luther 65–67

LLabour, Neurodivergent 271–274,

308Labour Party (UK) 15, 116, 255,

266, 270, 271–274, 308Lawson, Wenn 54, 57, 277learning disabilities 52, 60legal protections 3, 168, 169,

171–173, 183, 188, 291Leitch, Kevin 97, 126Letter from a Birmingham Jail 72lived experience, of autism 6, 31, 33,

46, 233, 246, 270Look Me in the Eye 221, 223losing, but having important effects

77–85Louder ThanWords 223Lovaas Institute/Lovaas, Ole Ivar ix,

91, 189“low-functioning” autism 83, 309“Lupron protocol”/Lupron therapy 7,

95, 96

Mmad pride movement 4

malpractice 89, 202marginalization 5, 91, 251“masking” 6, 162–163, 172, 177,

178, 184, 256“Master’s house”/“Master’s tools”

288, 298–299MCA (Mental Capacity Act (2007))

60McCollins, Andre/McCollins, Cheryl

196, 202, 203McDonnell, John 268–274medical experimentation 197medicalization/medication 8, 9, 82,

296, 298–300and neuroleptic abuse, 51, 52, 54,

56, 60–61medical model, of disability 1, 7–10,

188, 211, 278and Autism/Neurodiversity

Manifesto, 259, 261and critiques of the neurodiversity

movement, 292, 298medical treatment 59mental illness 61, 199, 292Miller, Gregory 202Milton, Damian 218, 271, 280, 282,

283misinformation

about autism 89, 97, 128, 155,158

about disability, 158and exclusivity, 117, 293

mission statements 91, 138, 226mistreatment 2, 7, 80, 81mobilization, of the autis-

tic/neurodivergent communityviii, 10, 295

mother-blame 11movement disorders 51, 52

Index 327

MR (mental retardation) 29, 32, 79,80

Msumba, Jennifer 203, 204Murray, Dinah 12, 218Myers, Jennifer Byde 156, 162

NNational Autism Project (UK) 15,

280–283, 308National Autistic Taskforce (UK) 15,

277, 282–283, 308, 312National Insurance Disability Scheme

(Australia) 185National Journal 233, 235, 236Ne’eman, Ari 36, 98, 129, 131, 151,

238, 299, 312neglect 80, 196, 222, 311Nelson, Amy and Gareth 12, 126neurocentrism 296Neurodevelopmental Disorders

Workgroup 168, 170, 182neurodivergences 3, 8, 10, 15, 159,

292, 299neurodiversity

origin of term 47philosophy of, 35politics of, 233–239

neurodiversity activism 35, 133–141,155, 294, 300

neurodiversity advocacy 155–165neurodiversity.com 12, 89–99, 307neurodiversity paradigm 47, 261Neurodiversity Weblog 95–99“neurodiversity-lite” 313neuroleptic abuse 12, 51–61neurological disabilities 4, 12, 261NeuroTribes 156neurotypical, meaning of 12

neurotypical privilege 3, 290Nicolaidis, Christina 134Nobody, Nowhere 25, 27–29“Nothing About Us Without Us”

principle v, 2, 158, 187,246–247, 269, 292

and Autistic Self AdvocacyNetwork (ASAN), 130

and Autonomy (journal), 215, 218

OOliver, Mike 7Open Journal Systems platform 217oppression 4, 70, 135, 137, 200, 251OSR (industrial chelator) 96, 97n2“Other Half, The” 282overmedication 4, 307“own world” paradigm 27, 29, 34

Pparadigm

autism-as-tragedy 26–28, 30, 33,34, 91, 229

disability rights, 136“entrapment”, 28, 35neurodiversity, 47, 261“own world”, 27, 29, 34pathology, 261“trapped”, 28, 35

Paradiz, Valerie 230parental grief/parental mourning 30,

33, 34. See also “Don’t Mournfor Us”

parenting practices, positive 6

328 Index

participatory research 137, 141, 306,307. See also CBPR (Com-munity Based ParticipatoryResearch)

“passing” 172“Past, Present, and Future” 83, 85pathologization 12, 99, 298pathology paradigm 261personal experience, of autism 6, 31,

33, 46, 233, 247, 270, 290,295

personal responsibility 288, 299person-first language 37, 260, 261“Petition to Defend the Dignity of

Autistic Citizens” 94physical restraint 4, 310PoC (person of color) 246–248, 250political activism 65, 72politics, of autism and neurodiversity

233–239polypharmacy 52“Positive Behaviour Support” 60prejudice 96, 99, 117, 290, 293prenatal testing, for autism 127–128,

131“pressure points” analysis 173primary sensory disabilities 3privilege 25, 27, 67, 72, 74, 165, 247,

312neurotypical, 3, 290

“pro-acceptance” 5, 12probabilistic causality 297“pro-cure” perspective on autism 5, 9,

300proprioception 162–163prosopagnosia 45psychiatric matters 3, 54, 65, 199,

201, 292, 298psychoanalytic child psychology 11

psychogenic theories 6psychotropics 8, 52, 54, 59, 60PTSD (Post-Traumatic Stress

Disorder) 149, 158, 204Public Knowledge Project 217Pukki, Heta 110, 215

Qquality of life 7, 55, 95, 172, 185,

294

Rrace 4, 135, 152, 167, 171, 174, 307

and first autism and race anthology,248, 249, 251

racism 67, 197–199, 250“Real Transparency” principle 249reasonable accommoda-

tions/reasonable adjustments 8,178, 180, 309

“recovery” 25, 172, 176, 183. See alsoEmergence: Labeled Autistic

reductionism 288, 296–297“refrigerator mother” theory 29, 296,

297“regression”, into autism 26rejection 28, 43, 198Rimland, Bernard 25, 27, 31risk aversion, “health and safety” 55risk factors, for autism 6Robertson, Scott ix, 136, 174Roll Call 236, 237Runswick-Cole, Katherine 288, 290

SSacks, Oliver 89

Index 329

Saint John’s Autism Listserv 78Schwarz, Phil 75, 92, 95scientific activism 138sedation 52, 53self-acceptance 23, 30, 312self-advocacy 5, 10, 85, 131, 148,

164, 180, 238, 310. See alsoIndependent Living on theAutistic Spectrum (InLv)

and AASPIRE, 138, 140and electric shock “treatment”,

196, 199self-definition 292self-determination, right to 4, 7–8,

142, 207self-diagnosis 292, 294self-discovery 42, 46self-identification 292self-improvement 222self-injury 313“self-narrating zoo exhibit” phe-

nomenon 37, 215, 216sensory disabilities/sensory sensi-

tivities 3, 26, 30, 215, 222,224

“severe” autism 172, 184, 309severity scale, for diagnosis of autism

167, 175, 177, 179, 183–185,187, 309

service provision 167, 168, 171, 177,180, 183, 185, 188

Shattock, Paul 53Shirley, Dame Stephanie “Steve” 280Shoemaker, Clifford 96Shore, Stephen 35, 214, 218, 230Silberman, Steve 156Sinclair, Jim 11, 23–37, 219, 307Singer, Alison 148Singer, Judy 2, 46, 213

single unified diagnosis, for autism169, 171, 180

Skinner, B.F. 196social communication disability,

autism as 249Social Communication Disorder

(SCD) 180, 185social communication domain, in the

DSM-5 176, 181, 183, 185,186

social conformism 300social environment 7, 10, 313social model, of disability 7, 11, 32,

125, 212, 217, 270, 272social networks 11social norms 7social oppression 4Something About Us 278special education 32, 180, 184“special interests” 175, 183, 185standpoint epistemology v, 290State Hospitals/State Schools (US)

79, 81stereotypes 84, 125, 128Stewart, Dr. Catriona 281stigmatization viii, 2, 158, 170, 186,

313and AASPIRE, 135, 140, 141and Neurodiversity.com, 94, 98,

99“stimming” 6, 8, 175, 185strengths, of autism viii, 8, 9, 114,

184, 189, 307, 309support needs 15, 170, 199, 308–313Sykes v. Bayer 95“symptoms”, of autism 1, 7, 176,

184, 185, 312synesthesia 147

330 Index

TTalking About Curing Autism

(TACA) ixTammet, Daniel 223thematic analysis viiitherapy ix, 7, 60, 230, 307Thompson, Vilissa 244Tisoncik, Laura 83, 90, 289, 295torture, in name of treatment

195–207, 311TPGA (Thinking Person’s Guide to

Autism, The) 13, 155, 156,158, 162, 163, 165, 307

tragedy paradigm, autism-as- 26–28,30, 33, 34, 91, 229

transgender 204, 292“trapped” paradigm 28, 35trauma

autism as response to 188parental, 33suffered by autistic people, 43,

134, 195, 198, 203, 212, 222suffered by Judge Rotenberg

Center employee, 202treatment

autism 74, 96, 99psychiatric, 54, 201torture as, 195–207, 311

Treehouse 278Trump, Donald 238twin studies 296

UUnited Methodist Church 95universal rights principles 4

VVaccine Court Chronicles 96vaccines, and autism ix, 7, 8, 54, 155,

158, 223, 238, 239and Neurodiversity.com, 93, 94,

96–98Ventura33 story website 123,

127–129Vivian, Amanda 174

WWakefield, Andrew 54, 238weaknesses, in autism viii, 7, 245,

293, 309“walking while autistic” 70Western biomedical model 8“We’ve Only Just Begun” principle”

250–251“What Are the Stakes?” 180–181WHO (World Health Organization)

229Why I Dislike Person First Language

37, 219Williams, Donna 214, 223

and history of neurodiversity, 23,24, 27, 28, 29–31, 32, 33, 37

Wing, Lorna 31, 55workplace bullying 70World Autism Day 151, 239World Wide Web 42, 68, 214Worlds of Autism 137, 139Wright, Suzanne and Bob 227–230,

278

Y“You Define You” principle 248