1 a Nameless Difference 6 Bedlam, Behaviourism, and Beyond 7

Home , Generation Rescue, Michelle Dawson, Speed of Dark, Unstrange Minds

Notes

1 A Nameless Difference

1. Further information about Ralph and other Victorian children with symptoms of autism can be found in Waltz and Shattock (2004). This article is based on the medical journals of Dr William Howship Dickinson, which are held in the Great Ormond Street Hospital archives. Birth, death and occupational information about Ralph and Margaret Sedgwick and their eight children, including Ralph, were obtained through British census records. 2. The medical uses of calomel, or mercury chloride, had been known since at least the seventeenth century. It was an effective antibacterial and purga- tive, widely used to treat ailments like syphilis. It also accumulated in the body if used regularly over time, causing irrevocable damage to the brain and other internal organs. The small amounts sometimes used for children with bowel symptoms at Great Ormond Street Hospital are unlikely to have caused any additional problems, however.

6 Bedlam, Behaviourism, and Beyond

1. ‘Jimmy Jones’ is a composite identity based on accounts collected for the Cardiff People First organisation’s Ely Hospital project; my 2011 interview with John Clements, a former clinician at Ely Hospital; and other accounts of life in British long-stay hospitals, particularly Hubert and Hollins (2006). 2. Willowbrook was a large institution for people with developmental disabilities in New York. Investigative journalists working with concerned staff and parents revealed the extent of neglect, abuse, and unethical medical experimentation that took place there (which are discussed elsewhere in this book). This well-publicised news story contributed greatly to the pace of deinstitutionalisation in the US. 3. Lest the reader think that the world has moved on, similar conditions exist in institutions outside Western Europe and North America. In 2012 one of my students described an identical use of donated toys as decorations in an institution in Pakistan she had visited, a charity-funded facility in which autistic children were living.

7 Parent Blaming, Parent Power, and the Start of Real Research

1. The Boston Higashi school is the US outpost of the Higashi School, a private special education venture based in Japan. It uses group-based education methods, including frequent group exercise.

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Abberley, Paul, 72 diagnosis of, 29–30, 40–1, 43–4, Abraham, Karl, 44 50–2, 88, 125–31 acquired epileptic aphasia, 9 diet and, 3, 9 ‘affective labour’, 165 education and, 21, 37–8, 48, 90, Age of Enlightenment, 11 92–9, 108, 132 Aichhorn, August, 42 electroshock therapy and, 101 Allison, Helen Green, 107 ﬁlm, television and literary Al-Razi, Abu Bakr Zakariyya, 17 representations of, 145–58 American Orthopsychiatric genetics and, 129, 143, 159, 161–2 Association, 42 herbal remedies and, 7–8, 11, 17 American Psychiatric Association, vi infanticide and, 15, 49, 158 anti-seizure mediction, 9 institutional care and, 20, 22–3, 26–31, 38–40, 87–92, 101–2, Applied Behavioural Analysis (ABA), 105–6 64, 93, 118, 125, 132, 138–40 Internet and, 134–6 aversives and, 96 medicalisation of, 11, 100–2, Armstrong, David E., 41 161–4 Arnold, Lawrence, vii, 141 medication and, 7, 8, 100–2 Asperger, Hans, 48–50, 52 as metaphor, 148–9, 151, 156–7 Asperger Syndrome, 155 New Age ideas about, 103–4 asylums, 20, 26–9 prevalence, 127–8, 132, 160–1 for children, 28, 47–8 psychological theories of, 50–61, for high-functioning adults, 28, 70–1, 73–5, 78–86, 102–3, 119 39–40 religious concepts of, 13–17, 34–5 moral panics and, 32, 39 seizures and, 7–10, 13–14, 131 see also autism, institutional care self-stimulating behaviours and; subnormality hospitals (stimming) and, 1, 4, 54, 88 attention deﬁcit hyperactivity socioeconomic change and, 19–21, disorder (ADHD), 12–13 25–9, 45, 75–6, 80, 105–6, 164 Attwood, Tony, 128 supernatural concepts of, 2, 16–19, autism, vii, 16, 48, 73, 85 21, 23 behaviourism and, 63–5, 92–7, 124 survivability and, 5, 12 biomedical theories, 71, 100–2, treatment of, 11 120–1, 158–60 vaccines and, 70, 162 changeling myths and, 17–19 Autism list, 134 charity discourses of, 107, 137–8, Autism Society of America, 120 141–5 Autism Speaks, 138, 162 class and ethnicity, 67–9, 91 autism spectrum, 38 cognitive theories of, 128, 159–60 autistic adults, 114, 132–7, 139–45 comorbid conditions, 12 autistic cognition, 160

185 186 Index

Autistic Network International disability, 14, 25 (ANI), 135 forced sterilisation and, 32 autistic symptoms, 9 immigration laws and, 32 autistic, vi medical model of, 71, 117 religious attitudes towards, 14–16, 19 Baron-Cohen, Simon, 128 rocial model of, 71–2, 141, 145 Bedlam, 26 stigma and, 110–13 behaviourism, 63 superstition and, 2 behaviourists, 123 disabled, 16 Bettelheim, Bruno, 43, 73 Dolnick, Edward, 74 Blair, Hugh, 19 Doman-Delacato method, 123, Bleuler, Eugen, 43 125–6 Brother Juniper, 16 Down, Dr John Langdon, 29, 41 Down syndrome vi, 29, 66–7 calomel, 8 drugs, 100 cave art, 12 DSM-II, 128 changeling, 17 DSM-III-R, 131 chelation, 163 DSM-IV, 131 Child Guidance movement, 32, 41–3, 47, 75–80, 84 Earlswood Asylum, 29–30 ‘childhood’, 41 echolalia, 55, 129 child psychiatry, 47, 77 EEG, 131 child psychology, 71–7 Eigtheenth century, 11 chromosomal syndromes, 66–7 Ely Hospital, 87–91 Clements, John, 90–1 Ely Report, 89 cognitive proﬁle, 128 Enlightenment, the, 10, 23 Combating Autism Act, 161 epilepsy, 6, 12, 13–15 County Asylums Act, 28 eugenics, 32–4, 48–50, 76, 157–8 cretinism, 23 Cure Autism Now, 143 ‘feeble minded’, 28, 38 Feinstein, Adam, 50, 70, 102 ‘cure or death’, 139 folklore, 11–17 folk myth, 17 Darwin, Charles, 31 Fölling, Asbjörn, 65 Dawson, Michelle, 122, 136 Foucault, 40 ‘degeneracy’, 32, 37 Freudian, 59 deinstitutionalisation, 125, 132 Freudian psychology, 69, 122 Dekker, Martijn, 136 Freud, Sigmund, 32 deprivation, 45 Frith, Uta, 19, 52, 99, 127 developmental disabilities, 26, 37 Diagnostic and Statistical Manual of Galton, Sir Francis, 33 Mental Disorders, vi, 128, 131 genetics, 66, 129, 143, 159 Dickens, Charles, 5 Grandin, Temple, 128 Dickenson, Dr William Howship, 1, ‘great conﬁnement’, 40 6–8, 41 Great Ormond Street Hospital, 1, 4–7 Index 187

Grinker, Roy, 13 MMR vacccine, 162 Guthrie, Robert, 65 modern medicine, 6 Montesorri, Maria, 22, 37 ‘holy fools’, 16 mutism, 129 ‘hospitalism’, 44–5 human potential movement, 103 Nadeson, Majia Holmer, 40 National Autistic Society, 105, 142 idiot child, 2 ‘I Exist’ campaign, 142 idiot savant, 30 National Institution for Deaf Mutes, Independent Living on the Autistic 21 Spectrum (inLv), 136 Ne’Emen, Ari, 142 industrialisation, 25 neural connectivity, 159 institutional care, 20 neurodevelopmental, 73 institutionalisation, 105 ‘neurodiversity’, 165 intellectual disability, 23 ‘New age’, 103 Itard, Jean-Marc Gaspard, 21–2, 36 Nineteenth century, 5 ‘noble savage’, 21 Jackson, Luke, 155 ‘normalcy’, 15 Jones, Kathleen, 75 Jordan, Rita, 132 occupational therapy, 22, 125 Oliver, Mike, 71 Kanner, Leo, 22, 47–58 operant conditioning, 64 Kanner’s autism, 52 Klein, Melanie, 44, 58–61, 80 pathographies, 109 Kolvin, Israel, 128 pattern recognition, 12 Kraepelin, Emil, 43 People First, 140 Kushner, Howard, 35 phenylketonuria (PKU), 65 Piaget, Jean, 42 Lawson, Wendy, 145 Picture Exchange Communication learning difﬁculties, 39 System (PECS), 126 Lissner, Kathy, 135 play therapy, 99–100 Lovaas, Ole Ivar, 63, 93 Porter, Roy, 16, 23 prosopagnosia, 136 madhouses, 27 psychiatry, 34 Mahler, Margaret, 80 ‘psychobiology’, 76 Maudsley, 90–2 psychology, 24, 32–4, 41 medical model of disability, 71, supernatural concepts and, 23–4, 117 34–5 medical profession, 5 psychometric intelligence tests, 38, medicinal herbs, 11 77 mental hygiene movement, 41 psychotherapy, 99 mental illness, 26 mercury chloride, 8 religious belief, 11 Mesibov, Gary, 98 Rimland, Bernard, 75, 119–20, 153 metabolic disorders, 65–6 ‘romantic primitivism’, 16 Milton, Damian, 136 Royal College of Physicans, 6 188 Index

Russia, 68 Spitz, Rene, 44 Rutter, Michael, 99, 119, 159 stereotypical behaviours, 54 stigma, 110–13 Saint Georges Hospital, 6 subnormality hospitals, 30–1, 87 Sanger, Margaret, 33 symbiotic psychosis, 81 savant syndrome, 12 schizophrenia, 73, 78 TEACCH, 98, 118, 124, 132 Schopler, Eric, 86, 97, 124 Theory of Mind, 159 Séguin, Edouard, 22–3 therapist-as-priest, 100 seizures, 7 Tourette syndrome, 35–6, 53 see also epilepsy Tréhin, Paul, 12 sensory differences, 21 trephination, 11 sensory impairments, 28 Triad of Impairments, 129–30, 135 sensory integration, 125 tuberculosis, 6 sensory perceptual differences, 82–3, Tustin, Frances, 80 124–5, 135–6 serotonin, 102 UCLA Neuropsychiatric Institute, 93 Seventeenth century, 11 universal grammar, 64 shaman, 13 University of Vienna, 48 Shattock, Paul, 119 Ship of Fools, 16 ‘Silicon Valley Effect’, 161 Victorian, 31 Silverman, Chloe, 74 Victorian England, 2, 25 Sinclair, Jim, 135–7 Victorian era, 5, 25 Skinner, B.F, 63 ‘Social Darwinism’, 31–2 weak central coherence, 159 social model of disability, 71–2, 141, Wild Boy of Aveyron, 21 145 Williams, Donna, 135 special education, 21–2, 31, 37–8, Willowbrook scandal, 90 108, 125, 132 Wing, Lorna, 99, 119, 125 speech therapy, 17, 38, 125–6 Wolfensberger, Wolf, 141, 164 spirit possession, 104 workhouses, 20