Notes

1 Anthropologizing Experiences of 1. In Latour’s work actants can include human and non-human actors such as organizations, objects, and ideas.

3 Recharting Territories, Redefining Roles: The Issue of Relationships 1. I’d like to note here that these moments do not necessarily occur in this order. In fact, often parents experience #3 well before #1 or #2, or perhaps have several #1 experiences before arriving at a final autism diagnosis. The order in which these moments are presented is purely a stylist choice on the part of the author and does not indicate in any way a purported trajec- tory of experience. 2. For a more extensive description of autism diagnostic tools and procedures see Rossi’s 2011 dissertation.

4 Peculiarities and Particularities: The Issue of Bodies 1. Jenny McCarthy is an American actress, game show host, and model. She is also a parent activist who claims that vaccines caused her son’s autism. Through her activism, she has spoken loudly against the vaccine schedule and has also claimed that chelation treatment helped to cure her son’s autism. 170 Notes

5 Navigations and Limitations: The Issue of Institutions 1. http://schools.nyc.gov/AboutUs/data/stats/default.htm 2. http://www.health.ny.gov/health_care/managed_care/reports/enrollment/ monthly/ 3. For some children who require at-home care or care provided by another institution (mental health facility, hospital, etc.), related services may be provided in those locations. References

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Films Drenzer, Todd. 2010. . Elliot, Adam. 2009. Mary and Max. Icon Entertainment International. Lembach, Marti. 2007. Daniel Isn’t Talking. Nan A. Talese. Marshall, Gary. 1999. The Other Sister. Touchstone Pictures. Mayer, Max. 2009. Adam. Fox Searchlight Pictures. Naess, Petter. 2005. Mozart and the Whale. Millennium Films. Nelson, Jessie. 2001. I am Sam. New Line Cinema. Regan, Tricia. 2007. Autism the Musical. Bunim-Murray Productions. Scott, Michel Orion. 2009. The Horse Boy. Zeitgeist Films. Williams, Donna. 1992. . Avon. Index

actants; see also institutional actants replication of uniformity Latour’s concept of 111 approach to 165 Activities of Daily Living scientific discussions of 84 (ADL) 28, 81–83 social constructions of 12 autistic body and 87–91 as system of language/social defined 88 connection 19 and various physical teaching strangers about disabilities 164 150–152 (see also strangers’ Actor–Network Theory reactions) (ANT) 15, 112, 127 term as storytelling advocacy 28–29 tool 165–166 aging, peculiarities and 86 therapeutic discussions of 84 Alcoholics Anonymous, and autism behaviors authoring of group self 144 environmental impacts on Andres 74, 81–84, 164 11–12 Anna 57–58, 61, 92–95 ignoring 76 , parental 85–86, 95, autism culture, parents as 107–108 producers of 15 Applied Behavior Analysis Autism Diagnosis Interview— (ABA) 2, 59, 102; see also Revised (ADI-R) 52 Julia, educational services and Autism Diagnostic Observation Asperger, H. 21 Schedule (ADOS) 52 Asperger’s syndrome 23, 108–109 autism label; see also labeling autism historical change of 19–20 abstraction of 20–24 and ordering of parents’ anthropologizing lives 85–86 experiences of 7–29 autism lifestyle 8, 25, 26, 36 author’s background and 9–13 adoption of 49 bowel disorder and 92 autism labels and 85–86 co-constructed Early Intervention services understandings of 37 and 59–60 current understandings of 22 explaining 63–64 (see also telling impact of term on parents 164 others) as meaningless term 163 pivotal moments in (see pivotal physical manifestations of 83 moments) 178 Index autism lifestyle—Continued narratives of 141 and resolving door of newcomer/oldtimer distinction therapists 60 and 105–106 Autism Parent Support Group as producers versus products of (APSG) autism culture 15 Author’s discovery of 33–37 settings of 33 Author’s focus on 36–37 stories of 31–46 (see also co-constructing and narratives; specific parents) sharing in 144–147 variability among 25, 33 establishment of 38 variable information sources fieldwork with 4, 27 of 35–36 heterogeneity of 40–41 156, 157 importance of 142–147 Autism Spectrum Disorder, leadership and committees of 38 prevalence of 22 media uses of 156–157 autism trainings 165–166 mothers’ versus fathers’ autism warriors 4, 36 involvement in 41–42 discursive authority/bureaucrati- nonprofit status and 40 zation and 134–135 online 156–157 institutions and 111 public meltdowns and 152–154 process of becoming 138 autism parenthood self-labeling as 5 collective experience of 162 autistic body; see also peculiarities meanings of 7 ADL and 87–91 Sarah’s statement on 166–167 experiencing world through 86 varied experience of 161–162 gastrointestinal issues and autism parents 91–95 activities defining lives of 14 Ava 47–48, 68, 77, 78, 100, 157 cultural co-construction of ADL and 88–90 17–18 potty-training and 102–103 diversity of 44–45 safety issues and 95–96 and exclusion from EI services 61 Bala 146 focus on experience of 21–22 diagnosis story of 57–58 gendering 41–42 dietary issues and 92–95 health of 109 Early Intervention and 61 identification as 5, 8, 23 safety issues and 98–99 income/class and 111 social stigma and 148–149 locating 43–44 telling others and 65–66 long-term caregiving and Barron, S. 141 106–109 Bateson, G. 139 meeting 37–41 biomedical perspective 34–35, 78 moments of dramatic change body peculiarities and 83–84 for 27–28 (see also pivotal bipolar disorder, group support moments) and 143–144 Index 179 bodily interactions 28; see also De Certeau, M. 14, 20–21 Activities of Daily Living Defeat Autism Now (DAN) 78 (ADL); autistic body; deinstitutionalization 19–20 gastrointestinal issues; safety Department of Education (DOE); issues; sexuality/puberty see also educational services; constraints on 13–14 school systems Merleau-Ponty and 83, 90–91 Julia’s story and 120–126 body(ies); see also autistic body Dewey, J. 15 impacts on daily lives 84 diagnosis 47–48, 51–58 institutional control of 114–115 culture and 54–55 theoretical approach to 9 impacts of 112–113 boundaries informal 10–11 private-public blurring of 60–61 instruments of 51–52 EI services and 78 as pivotal moment 27, 51–58 redefining 15 preliminary 59 sexuality and 104–106 reactions to 1–2, 52–58 Bourdieu, P. 115–116, 126–127 (see family, reactions of; bowel disorder, autism and 92 strangers’ reactions; telling Braden 1, 42, 55–56, 64 others) bureaucratization 111, 126–134 rise in prevalence of 19–20 defined 115 shifting understandings of 10 documentation obstacles Diagnostic and Statistical Manual of and 126–128 Mental Disorders (DSM-IV) securing healthcare services 20, 51 and 128–134 diagnostic criteria, changes in 20 strategies of 126 dietary issues 65–67, 79, 81, 91, 92–95 caregiving, long-term 106–109; disability diagnosis; see also diagnosis see long-term caregiving parents’ experiences of 18–19 casein 91 disability models 85 class issues 117–118 discursive authority 111, 116–126, classroom, teacher behaviors 134 in 11–12 defined 115 communication 28–29, 137–160; and politics of representation see also narratives 118–119 parental, as educational act 137 race, class, gender issues with strangers 147–155 and 117–118 value of 158–160 and securing educational communication challenges, over services 119–126 safety issues 101–102 diversity context 33 of autism parents 44–45 learning 37 organization 165–166 courtesy stigma 150 divorce; see also marriage; Cremin, L. 15–16, 137 relationships culture, autism and 54–55 after diagnosis 70–71 180 Index documentation ethnography bureaucratization and 126–128 framework of 13–30 saving 133–134 groups focused on 34–35 Down’s syndrome, rewriting structure of 27–29 script for 64 ethnography themes 24–27; see dressing issues 82, 88–90 also multiplicity of experience; reordering activity; temporality Early Intervention services 49, 50 of experience background and process experience, multiplicity of; of 58–59 see multiplicity of experience and exclusion of parents 61 Eyal, G. 19–20 as institutional actants 112 as moment of dramatic family change 27 ordering of 24 parents’ experiences of 58–63 reactions of 3 (see also private-public boundaries relationships; telling others) and 78 fathers, involvement of 41–42 Eddings Prince, D. 140 fathers’ workshops 73–74 education fears, parental 107–108 Cremin’s definition of 16, 137 fetal development, abnormal 18 parental communication as 137 financial planning 72–73 parents’ use of 15–17, 28–29 Foucault, M. 116 Education for All Handicapped Franklin 81–83, 146 Children Act (EHA) 119 ADL and 88–90 educational anthropology, body peculiarities and 84–85 focus of 7 educational services and educational services 120–126 discursive authority and safety issues and 97–98 119–126 sexuality issues and 104–105 hearings and 121–125 Free Appropriate Public Education Julia’s story and 120–126 (FAPE) 120 educational sources 4 educative activities Galen 74 narratives and 139–142 gastrointestinal issues 28 through media 155–158 autistic body and 91–95 Elias 99, 145–146 gender issues 24–25, 117–118 eligibility genetic issues 22 bureaucratic practices and gluten 91 128–130 Goffman, E. 13–14, 111, misdiagnosis and 127 114–115, 120, 139, Elliot 78–79, 101–102, 146 148–150 environmental factors 22 Governor’s Bill (2006–2007), impacts of 11–12 Medicaid Waiver and 130 meltdowns and 31 Grandin, T. 141 Index 181 group meetings, educative activities Jessica 132–133, 145–147 in 138 relationship changes and 71–72 group narrative 138; see also safety issues and 97, 99 narratives and support from fellow parents 152–154 Hacking, I. 127–128 telling others and 65 healthcare institutions 28 Joan, pivotal moments and 78 bureaucratization and 128–134 Joey 74, 146 and regulation and control of Julia 38–39, 41, 43, 146, 164 parents 115–116 ADL and 88–90 Holland, D. 17–18, 49 and fears of 107–108 educational services and identity, renegotiations of 120–126 49–50, 55 Franklin’s ADLs and 81–83 Individual Services Plan (ISP) 132 pivotal moments and 76 Individualized Education Plan relationship changes and 73 (IEP) 119, 120–121 safety issues and 97–98 Individuals with Disabilities Education sexuality issues and 104–105 Act (IDEA) 119–120 son’s peculiarities and 84–85 institutional actants 112–114 autism warriors and 134–135 Kaleena bureaucratization and 126–134 anxiety and fears of 108 and control of bodies 114–115 diagnosis story of 52–53 defined 112 Early Intervention and 62–63 discursive authority and family reactions and 69 116–126 (see also discursive pivotal moments and 78 authority) planned ignoring and 154 EI services as 112 telling others and 69 Medicaid/Medicaid Waiver Kanner, L. 21–22, 23 and 114 Kate 1–2, 39 and ordering of parents’ activities diagnosis story of 55–56 114–116 relationship changes and 72–76 schools and 113–114 role redefinition and 64–65 institutional constraints 13–14, 28, telling others and 64–65 111–135 Kelly, S. 51, 140–141 institutionalization, power relations Kleinman, A. 50, 106 and 116–117 knowledge, co-construction of insurance coverage, diagnostic 36–37 criteria and 12 Internet, narratives on 141–142, labeling 84 156–157 disability, persistence of 117–118 Landsman, G. 18–19, 52 Jack 53–55, 63, 66–67, 97 language, in special education Jacob 52–53, 62, 108 116, 119 182 Index

Latour, B. 15, 111, 112, 127 eligibility and coverages Lave, J. 17, 36, 49, 50, 105–106 129–130 learning as institutional actant 114 informal versus institutional IQ score and 131 15–16 medical bureaucracies 28 situated 36–37 medical model of disability 85 Leslie 1, 3, 31–32, 39–40, medical perspective; see biomedical 145–147, 164 perspective Early Intervention and 61 Meghan relationship changes and 72–75 diagnosis story of 53–55 sexuality issues and 105–106 dietary changes and 66–67 lifestyle; see autism lifestyle Early Intervention and 63 long-term caregiving 28, 106–109 planned ignoring and 154 role redefinition and 67–68 magazines, narratives in 157–158 safety issues and 97 management techniques 111–112; Mehan, H. 118–119 see also bureaucratization; meltdowns discursive authority environmental stimuli and 31 Marcus 56–57, 69–70, 72, public 98–101, 138 150–152 safety issues and 98–99 Margaret 41, 145–146 strangers’ reactions to 3, autism lifestyle and 78–79 150–152 safety issues and 101–102 menstruation 103–104 sexuality issues and 106 Merleau-Ponty, M. 13, 83, 86, marriage, autism lifestyle and 90–91 70–76, 79 metanarratives, parents’ creation Martin 143–144 of 51 Mary 108–109 methodological approach 9 McCarthy, J. 93 misdiagnosis, parental acceptance McDermott, R. 16 of 127 Measles, Mumps, and Rubella motherhood, rewriting story (MMR) vaccine 92 of 19, 52 media, educative activities mothers, involvement of 41–42 and 138, 155–158 multiplicity of experience 9, 25 Medicaid bureaucratic practices and narratives 128–134 autism, examples of 141 eligibility for 115 autism as tool in 165–166 as institutional actant 114 in autism studies/awareness 138 straight 129 co-constructing 138, 142–147 Medicaid service coordinator as educational methodology (MSC) 131–132 139–142 Medicaid Waiver Program group 138 bureaucratic practices and modes of presenting 141–142 128–134 normalizing 64 Index 183

social change and 140 pivotal moments 48–51; see also value of sharing 158–160 diagnosis; Early Intervention Nathan 1, 74, 75 services; telling others National Autism Association, significance of 77–78 The 156 planned ignoring 154–155 neurologist referrals 52 politics of representation Nicole 2–3 118–119 normalizing narratives 64 potty-training 68, 102–103 NY Lawyers for Public power relations Interest 122, 123, 126 Bourdieu’s perspective on 115–116 Occupational Therapy 59 DOE and 125–126 Ochs, E. 18–19 language and 119 “Ode to Leslie,” 74 between parents and Office for Persons with schools 116–117 Developmental Disabilities puberty; see sexuality/puberty (OPWDD) 131–132 public spaces Organization for Autism autism-proofed 98–99 Research 156 meltdowns in 98–101, 138 organization of diversity approach 165–166 Queens, diversity of 43

Page, T. 141 race issues 117 parents; see autism parents; autism Rapp, R. 18 warriors relationships, autism lifestyle Parent’s Handbook for Special and 70–76, 79 Education 133–134 reordering activity 9, 24–25 Parents’ rights, IDEA and through institutional 119–120 action 114–116 particularities 83–86 replication of uniformity time and place as 84 approach 165 partnerships, autism lifestyle Rhea 3 and 70–76, 79 Richard 42 peculiarities 83–86 diagnosis story of 56–57 ADL as 87–91 family reactions and 69–70 autistic body and 86 pivotal moments and 78 child and parent safety as planned ignoring and 95–102 154–155 gastrointestinal issues as 91–95 relationship changes and 72 sexuality and puberty 102–106 teaching strangers and 150–152 variations in 109–110 personal care issues 82; see also safety issues 28, 95–102 Activities of Daily Living during meltdowns 98–99 (ADL) parental fears and 107 Physical Therapy 59 for parents 97–98 184 Index

Sarah 1, 3, 31–32, 41, 133 race, class, gender issues ADL and 88–90 and 117–118 anxieties and fears of 107–108 Special Needs Trust 72–73 on autism parenthood 166–167 speech therapy, Julia’s story diagnosis story of 47–48, 53, 77 and 120–126 and founding of APSG 38–39 stigma; see also social stigma narrative of 142 courtesy 150 online networking and 156–157 storytelling; see also narratives pivotal moments and 76, 78 public 140 safety issues and 95–96 strangers’ reactions 3; see also sexuality issues and 102–106 social stigma telling others and 68 communication strategies school systems 28 and 147–155 discursive authority and educative activities and 138 119–126 planned ignoring and 154–155 as institutional actants 113–114 to public meltdowns 98–100 and regulation and control of and support for fellow parents 115–116 parents 152–154 self-presentation, research on and teaching about autism 139–140 150–152 services Supplemental Security Income eligibility for 2 (SSI) 128–129 types of 2 support groups; see also Autism settings 33 Parent Support Group (APSG) sexuality/puberty 28, 102–106 collaborative efforts of 4 Sirota, K. 143–144 contrasts among 147 situated learning 36–37 importance of 142–147 sleep issues 145–147 uniqueness versus social actors, Latour’s concept commonalities of 8 of 111 variation among 27 social model of disability 85 symbolic violence 115–116 social networking, online 156–157 social practice theory 49 Tammer, D. 141 social spaces, theoretical approaches tantrums; see meltdowns to 14 teachers, behaviors of 11–12 social stigma; see also strangers’ telling others 49, 50, 54–55 reactions impacts of 79 challenging 138, 148–150 parents’ experiences with 63–70 Goffman’s types of 148 as pivotal moment 27 socialization, parental, process of 7 temporality of experience 9, Solomon, O. 19 26–27 space, theoretical discussion of 9 therapists, revolving door of 60 special education Tony 132–133 language of 116, 119 Twitter, ASPG and 157 Index 185 vaccine controversy 92–95 Walking in the City Valle, J. 116, 118 (De Certeau) 20–21 Valverde, M. 144 Wallace, A. 165 Varenne, H. 16, 33 Welcome to Holland 3 Victor 81, 90 Wenger, E. 17, 36, 50, video, APSG’s use of 157 105–106 violence, symbolic 115–116 Williams, D. 141

Waitlist issues 133 YouTube 157 Wakefield, A. 92