Educational Interventions for Children with Autism Spectrum Disorders: Perceptions of Parents and Teachers in a Northeast Tennessee School System

Total Page:16

File Type:pdf, Size:1020Kb

Educational Interventions for Children with Autism Spectrum Disorders: Perceptions of Parents and Teachers in a Northeast Tennessee School System East Tennessee State University Digital Commons @ East Tennessee State University Electronic Theses and Dissertations Student Works 12-2010 Educational Interventions for Children with Autism Spectrum Disorders: Perceptions of Parents and Teachers in a Northeast Tennessee School System. Paula Anderson Nickels East Tennessee State University Follow this and additional works at: https://dc.etsu.edu/etd Part of the Educational Sociology Commons, and the Special Education and Teaching Commons Recommended Citation Nickels, Paula Anderson, "Educational Interventions for Children with Autism Spectrum Disorders: Perceptions of Parents and Teachers in a Northeast Tennessee School System." (2010). Electronic Theses and Dissertations. Paper 1753. https://dc.etsu.edu/etd/ 1753 This Dissertation - Open Access is brought to you for free and open access by the Student Works at Digital Commons @ East Tennessee State University. It has been accepted for inclusion in Electronic Theses and Dissertations by an authorized administrator of Digital Commons @ East Tennessee State University. For more information, please contact [email protected]. Educational Interventions for Children with Autism Spectrum Disorders: Perceptions of Parents and Teachers in a Northeast Tennessee School System _____________________ A dissertation presented to the faculty of the Department of Educational Leadership and Policy Analysis East Tennessee State University In partial fulfillment of the requirements for the degree Doctor of Education _____________________ by Paula Anderson Nickels December 2010 _____________________ Dr. Eric Glover, Chair Dr. Cecil Blankenship Dr. Virginia Foley Dr. Pamela Scott Keywords: Autism Spectrum Disorder, Pervasive Developmental Disorder, Teaching Methods, Intervention, Parent Perceptions, Teacher Perceptions ABSTRACT Educational Interventions for Children with Autism Spectrum Disorders: Perceptions of Parents and Teachers in a Northeast Tennessee School System by Paula Anderson Nickels This qualitative case study investigated the perceptions of parents of children with autism spectrum disorders (ASD), special education teachers, and general education teachers in a Northeast Tennessee public school system regarding educational interventions for children with ASD including what interventions they have found effective, the barriers and challenges they have faced, and how they view their relationships with one another. Data were collected through interviews with a purposeful sample of 7 parents of 6 children with autism spectrum disorders, 8 special education teachers, and 6 general education teachers and a review of documents. Parent and teacher participants represented children at all levels on the autism spectrum, a variety of grade levels (PreK-12), and a wide range of educational placements. Data were analyzed using the constant comparison analysis method. Nine themes emerged describing parent and teacher perceptions of educational interventions they found effective for children with ASD. These themes were intensive early intervention using multiple methods; a structured learning environment; adult-mediated and peer-mediated interventions for social and communication skills; inclusion with a balance of direct services; support staff to facilitate inclusion; a functional approach to problem behaviors; alternative and augmentative communication interventions; and sensory-motor interventions. Barriers faced by 2 parents and teachers included lack of training and knowledge; lack of time; challenges caused by characteristics of ASD; problematic teacher attitudes; problematic parent attitudes; transition issues; and need for additional services. Parents and teachers described factors that facilitate positive parent-teacher relationships including collaboration, teamwork, and support; on-going communication; IEP Team processes; and positive teacher relationships with autistic children. The current study helps to fill a gap in the existing research literature by adding to knowledge about parent and teacher perceptions of educational interventions for children with ASD. Recommendations are made based on study findings to provide parents and teachers with insights from other points of view that can facilitate mutual collaboration in meeting the educational needs of children with ASD. 3 DEDICATION This study is dedicated with deep love and affection to my family. The race could not have been run nor the finish line crossed without your faithful love and support. First and foremost, to my precious husband Mark. Thank you for believing in me, supporting me, and cheering me on throughout this journey. You are my best friend and soul- mate, the love of my life. Thank you for sharing my hopes and dreams and undergirding me with endless patience and encouragement. I cannot tell you how much I appreciate everything you have done for me and all that you have sacrificed to help me achieve my goal. I thank God every day for the gift of your unconditional love that sustains me, nourishes me, and gives me more joy than you will ever know. To my beloved father and the memory of my mother. Dad, I am so very thankful that you are there to see me reach this goal. You and Mother instilled in me a love of learning and a passion for excellence that is part of the fabric and fiber of my being and a major reason I undertook this endeavor. During phone conversations and our times together you have always asked about my studies and expressed your interest and belief in me. Your encouragement has meant the world to me. Thank you, Dad, for blessing me with the most valuable gift a daughter could ever receive, that of knowing my father loves me and is proud of me. To my son John Mark. I cannot thank you enough for all that you have done to make my dream come true. When it was my turn to pursue a lifelong ambition, you were there for me with your generous love and support. As I cross the finish line and reach for the prize, I look to the sidelines knowing you are there as one of my biggest fans. Without you my dearest son none of this would have been possible. Thank you from the depths of my heart. To my sisters and all the rest of my family. Thank you for all your kind words of encouragement and for spurring me on by being such outstanding role models yourselves in numerous, multi-facetted ways. I thank God for each and every one of you and the countless ways He has blessed my life through such an amazing family. 4 ACKNOWLEDGMENTS I wish to express my appreciation to all the faculty in the Department of Educational Leadership and Policy Analysis at East Tennessee State University. They have inspired me with their wealth of knowledge, their dedication to excellence, and the outstanding quality of their educational leadership. I am especially grateful to Dr. Eric Glover, my advisor and dissertation chair, whose mentorship, personal interest, and kind words of encouragement have been invaluable to me. I am deeply grateful for the feedback, guidance, and warm support he has given me throughout my studies and the dissertation process. He has given me confidence to persevere and helped to make my journey a delight. I also wish to express my gratitude to the other members of my committee. Dr. Virginia Foley and Dr. Pamela Scott have shared their wisdom as treasured teachers, providing new understandings and practical applications for my own role as an educational leader. I especially appreciate the positive encouragement, support, and gift of time they have provided throughout the dissertation process. I also wish to thank the cognate member of my committee, Dr. Cecil Blankenship, for his time and support. We share a common background and passion for special education, and I have especially relished his helpful insights from this field. I want to thank Dr. Karen Reed-Wright, my external auditor, for generously providing her time and assistance in helping me to reach this milestone. She has been a terrific resource and a welcome source of feedback and encouragement throughout this process. I am also grateful to the colleagues in my cohort. Without the friendship and support of these outstanding educators, I could not have made it to the journey’s end. Finally, I wish to express my deepest appreciation to the parents, special education teachers, and general education teachers who so generously allowed me to interview them for this study and hear their remarkable stories and experiences. 5 CONTENTS Page ABSTRACT .......................................................................................................................... 2 DEDICATION ...................................................................................................................... 4 ACKNOWLEDGMENTS .................................................................................................... 5 LIST OF TABLES ................................................................................................................ 14 Chapter 1. INTRODUCTION ........................................................................................................ 15 Purpose of the Study ................................................................................................. 19 Research Questions ................................................................................................... 19 Significance of the Study .......................................................................................... 20 Scope of the Study ...................................................................................................
Recommended publications
  • Phenotyping, Etiological Factors, and Biomarkers: Toward Precision Medicine in Autism Spectrum Disorders David Q
    Special Article Phenotyping, Etiological Factors, and Biomarkers: Toward Precision Medicine in Autism Spectrum Disorders David Q. Beversdorf, MD; MISSOURI AUTISM SUMMIT CONSORTIUM* ABSTRACT: Despite the progress made in understanding the biology of autism spectrum disorder (ASD), effective biological interventions for the core symptoms remain elusive. Because of the etiological hetero- geneity of ASD, identification of a “one-size-fits-all” treatment approach will likely continue to be chal- lenging. A meeting was convened at the University of Missouri and the Thompson Center to discuss strategies for stratifying patients with ASD for the purpose of moving toward precision medicine. The “white paper” presented here articulates the challenges involved and provides suggestions for future solutions. (J Dev Behav Pediatr 37:659–673, 2016) Index terms: autism, biomarkers, precision medicine. Significant progress has been made in understanding Phase II clinical trials.5 This perceived “failure” is likely the biology of autism spectrum disorder (ASD) over the due to the etiological heterogeneity of the subjects with past decade. However, effective biological interventions ASD who received the specific treatment. A review of the for the core symptoms remain elusive. Instead of a single data for the arbaclofen study suggests a strong positive or even a small set of causes, a consensus has emerged response for at least a subset of fragile X and patients with that genetic and environmental causes of ASD are likely ASD. Positive responses in some individuals, but other- multifactorial. The genetic architecture of ASD has be- wise statistically nonsignificant beneficial group effects, come increasingly clear and increasingly complex with are characteristic of most of these early pharmacological estimates of at least 1000 genetic alterations associated treatment trials of ASD.
    [Show full text]
  • Autism Diagnosis Differentiates Neurophysiological Responses To
    Tye et al. Journal of Neurodevelopmental Disorders (2015) 7:33 DOI 10.1186/s11689-015-9129-2 RESEARCH Open Access Autism diagnosis differentiates neurophysiological responses to faces in adults with tuberous sclerosis complex Charlotte Tye1,2*, Teresa Farroni3,4, Ágnes Volein4, Evelyne Mercure5, Leslie Tucker4, Mark H. Johnson4 and Patrick F. Bolton1,2 Abstract Background: Autism spectrum disorder (ASD) is a common and highly heritable neurodevelopmental disorder that is likely to be the outcome of complex aetiological mechanisms. One strategy to provide insight is to study ASD within tuberous sclerosis complex (TSC), a rare disorder with a high incidence of ASD, but for which the genetic cause is determined. Individuals with ASD consistently demonstrate face processing impairments, but these have not been examined in adults with TSC using event-related potentials (ERPs) that are able to capture distinct temporal stages of processing. Methods: For adults with TSC (n = 14), 6 of which had a diagnosis of ASD, and control adults (n = 13) passively viewed upright and inverted human faces with direct or averted gaze, with concurrent EEG recording. Amplitude and latency of the P1 and N170 ERPs were measured. Results: Individuals with TSC + ASD exhibited longer N170 latencies to faces compared to typical adults. Typical adults and adults with TSC-only exhibited longer N170 latency to inverted versus upright faces, whereas individuals with TSC + ASD did not show latency differences according to face orientation. In addition, individuals with TSC + ASD showed increased N170 latency to averted compared to direct gaze, which was not demonstrated in typical adults. A reduced lateralization was shown for the TSC + ASD groups on P1 and N170 amplitude.
    [Show full text]
  • Sleep As a Translationally-Relevant Endpoint in Studies of Autism Spectrum Disorder (ASD)
    www.nature.com/npp NEUROPSYCHOPHARMACOLOGY REVIEWS Sleep as a translationally-relevant endpoint in studies of autism spectrum disorder (ASD) Galen Missig 1, Christopher J. McDougle2,3 and William A. Carlezon Jr.1 Sleep has numerous advantages for aligning clinical and preclinical (basic neuroscience) studies of neuropsychiatric illness. Sleep has high translational relevance, because the same endpoints can be studied in humans and laboratory animals. In addition, sleep experiments are conducive to continuous data collection over long periods (hours/days/weeks) and can be based on highly objective neurophysiological measures. Here, we provide a translationally-oriented review on what is currently known about sleep in the context of autism spectrum disorder (ASD), including ASD-related conditions, thought to have genetic, environmental, or mixed etiologies. In humans, ASD is frequently associated with comorbid medical conditions including sleep disorders. Animal models used in the study of ASD frequently recapitulate dysregulation of sleep and biological (diurnal, circadian) rhythms, suggesting common pathophysiologies across species. As our understanding of the neurobiology of ASD and sleep each become more refined, it is conceivable that sleep-derived metrics may offer more powerful biomarkers of altered neurophysiology in ASD than the behavioral tests currently used in humans or lab animals. As such, the study of sleep in animal models for ASD may enable fundamentally new insights on the condition and represent a basis for strategies that enable the development of more effective therapeutics. Neuropsychopharmacology (2020) 45:90–103; https://doi.org/10.1038/s41386-019-0409-5 INTRODUCTION dysregulation are frequently comorbid and thus also represent A recent estimate suggests that as many as 2.5% of children have important aspects of these conditions [10].
    [Show full text]
  • Why We Oppose Autism Speaks
    Why We Oppose Autism Speaks Autism Speaks, despite its name, does not speak for autistic people. When polled, 98% of autistic adults oppose Autism Speaks –and there is a massive global movement by autistic people and allies to stop Autism Speaks. In fact, regardless of the many differences among autistic advocates about politics and advocacy, there is one view we pretty much ALL agree on: that Autism Speaks is a hate group. Some reasons: Autism Speaks has allocated hundreds of millions of dollars towards “eugenics” projects that may seek to prevent autistic people from being born. • Autism Speaks is a co-founder of the MSSNG project, a massive, far-reaching project to make a global database of 10,000+ autistic children’s DNA available for use by researchers throughout the world who can fill out a pop-up menu on their website to access it. • The DNA is extracted without the children’s permission. • It is done with the purpose of identifying “autism genes” that will then be used in prenatal testing. • If common genes are identified through this research, people will do prenatal testing and terminate pregnancies if they think there are “signs of autism”. • This project is active in Canada. Autism Speaks Canada has earmarked hundreds of thousands of dollars to its own arm of the project. A group of geneticists in Toronto has also been involved in collecting data for the database. • One of the project’s co-founders, Dr. James Watson, was fired from Cold Spring Harbour Laboratory for his racist remarks about African Americans, intelligence and using eugenics to find “a cure for stupid”.
    [Show full text]
  • Disability in an Age of Environmental Risk by Sarah Gibbons a Thesis
    Disablement, Diversity, Deviation: Disability in an Age of Environmental Risk by Sarah Gibbons A thesis presented to the University of Waterloo in fulfillment of the thesis requirement for the degree of Doctor of Philosophy in English Waterloo, Ontario, Canada, 2016 © Sarah Gibbons 2016 I hereby declare that I am the sole author of this thesis. This is a true copy of the thesis, including any required final revisions, as accepted by my examiners. I understand that my thesis may be made electronically available to the public. ii Abstract This dissertation brings disability studies and postcolonial studies into dialogue with discourse surrounding risk in the environmental humanities. The central question that it investigates is how critics can reframe and reinterpret existing threat registers to accept and celebrate disability and embodied difference without passively accepting the social policies that produce disabling conditions. It examines the literary and rhetorical strategies of contemporary cultural works that one, promote a disability politics that aims for greater recognition of how our environmental surroundings affect human health and ability, but also two, put forward a disability politics that objects to devaluing disabled bodies by stigmatizing them as unnatural. Some of the major works under discussion in this dissertation include Marie Clements’s Burning Vision (2003), Indra Sinha’s Animal’s People (2007), Gerardine Wurzburg’s Wretches & Jabberers (2010) and Corinne Duyvis’s On the Edge of Gone (2016). The first section of this dissertation focuses on disability, illness, industry, and environmental health to consider how critics can discuss disability and environmental health in conjunction without returning to a medical model in which the term ‘disability’ often designates how closely bodies visibly conform or deviate from definitions of the normal body.
    [Show full text]
  • Contribution of Multiple Inherited Variants to Autism Spectrum Disorder (ASD) in a Family with 3 Affected Siblings
    G C A T T A C G G C A T genes Article Contribution of Multiple Inherited Variants to Autism Spectrum Disorder (ASD) in a Family with 3 Affected Siblings Jasleen Dhaliwal 1 , Ying Qiao 1,2, Kristina Calli 1,2, Sally Martell 1,2, Simone Race 3,4,5, Chieko Chijiwa 1,5, Armansa Glodjo 3,5, Steven Jones 1,6 , Evica Rajcan-Separovic 2,7, Stephen W. Scherer 4 and Suzanne Lewis 1,2,5,* 1 Department of Medical Genetics, University of British Columbia (UBC), Vancouver, BC V6H 3N1, Canada; [email protected] (J.D.); [email protected] (Y.Q.); [email protected] (K.C.); [email protected] (S.M.); [email protected] (C.C.); [email protected] (S.J.) 2 BC Children’s Hospital, Vancouver, BC V5Z 4H4, Canada; [email protected] 3 Department of Pediatrics, University of British Columbia (UBC), Vancouver, BC V6T 1Z7, Canada; [email protected] (S.R.); [email protected] (A.G.) 4 The Centre for Applied Genomics and McLaughlin Centre, Hospital for Sick Children and University of Toronto, Toronto, ON M5G 0A4, Canada; [email protected] 5 BC Children’s and Women’s Health Center, Vancouver, BC V6H 3N1, Canada 6 Michael Smith Genome Sciences Centre, Vancouver, BC V5Z 4S6, Canada 7 Department of Pathology and Laboratory Medicine, University of British Columbia (UBC), Vancouver, BC V6T 1Z7, Canada * Correspondence: [email protected] Abstract: Autism Spectrum Disorder (ASD) is the most common neurodevelopmental disorder in Citation: Dhaliwal, J.; Qiao, Y.; Calli, children and shows high heritability.
    [Show full text]
  • Constructing Narratives and Identities in Auto/Biography About Autism
    RELATIONAL REPRESENTATION: CONSTRUCTING NARRATIVES AND IDENTITIES IN AUTO/BIOGRAPHY ABOUT AUTISM by MONICA L. ORLANDO Submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy Department of English CASE WESTERN RESERVE UNIVERSITY May 2015 2 CASE WESTERN RESERVE UNIVERSITY SCHOOL OF GRADUATE STUDIES We hereby approve the dissertation of Monica Orlando candidate for the degree of Doctor of Philosophy.* Committee Chair Kimberly Emmons Committee Member Michael Clune Committee Member William Siebenschuh Committee Member Jonathan Sadowsky Committee Member Joseph Valente Date of Defense March 3, 2015 * We also certify that written approval has been obtained for any proprietary material contained therein. 3 Dedications and Thanks To my husband Joe, for his patience and support throughout this graduate school journey. To my family, especially my father, who is not here to see me finish, but has always been so proud of me. To Kim Emmons, my dissertation advisor and mentor, who has been a true joy to work with over the past several years. I am very fortunate to have been guided through this project by such a supportive and encouraging person. To the graduate students and faculty of the English department, who have made my experience at Case both educational and enjoyable. I am grateful for having shared the past five years with all of them. 4 Table of Contents Abstract ............................................................................................................................... 5 Chapter 1: Introduction Relationality and the Construction of Identity in Autism Life Writing ........................ 6 Chapter 2 Clara Claiborne Park’s The Siege and Exiting Nirvana: Shifting Conceptions of Autism and Authority ................................................................................................. 53 Chapter 3 Transformative Narratives: Double Voicing and Personhood in Collaborative Life Writing about Autism ..............................................................................................
    [Show full text]
  • The Joy of Autism: Part 2
    However, even autistic individuals who are profoundly disabled eventually gain the ability to communicate effectively, and to learn, and to reason about their behaviour and about effective ways to exercise control over their environment, their unique individual aspects of autism that go beyond the physiology of autism and the source of the profound intrinsic disabilities will come to light. These aspects of autism involve how they think, how they feel, how they express their sensory preferences and aesthetic sensibilities, and how they experience the world around them. Those aspects of individuality must be accorded the same degree of respect and the same validity of meaning as they would be in a non autistic individual rather than be written off, as they all too often are, as the meaningless products of a monolithically bad affliction." Based on these extremes -- the disabling factors and atypical individuality, Phil says, they are more so disabling because society devalues the atypical aspects and fails to accommodate the disabling ones. That my friends, is what we are working towards -- a place where the group we seek to "help," we listen to. We do not get offended when we are corrected by the group. We are the parents. We have a duty to listen because one day, our children may be the same people correcting others tomorrow. In closing, about assumptions, I post the article written by Ann MacDonald a few days ago in the Seattle Post Intelligencer: By ANNE MCDONALD GUEST COLUMNIST Three years ago, a 6-year-old Seattle girl called Ashley, who had severe disabilities, was, at her parents' request, given a medical treatment called "growth attenuation" to prevent her growing.
    [Show full text]
  • Heritability of Autism Spectrum Disorder in a UK Population-Based Twin Sample
    Research Original Investigation Heritability of Autism Spectrum Disorder in a UK Population-Based Twin Sample Emma Colvert, PhD; Beata Tick, MSc; Fiona McEwen, PhD; Catherine Stewart, PhD; Sarah R. Curran, MD; Emma Woodhouse, BSc; Nicola Gillan, BSc; Victoria Hallett, PhD; Stephanie Lietz, PhD; Tracy Garnett, DClinPsych; Angelica Ronald, PhD; Robert Plomin, PhD; Frühling Rijsdijk, PhD; Francesca Happé, PhD; Patrick Bolton, MD Supplemental content at IMPORTANCE Most evidence to date highlights the importance of genetic influences on the jamapsychiatry.com liability to autism and related traits. However, most of these findings are derived from clinically ascertained samples, possibly missing individuals with subtler manifestations, and obtained estimates may not be representative of the population. OBJECTIVES To establish the relative contributions of genetic and environmental factors in liability to autism spectrum disorder (ASD) and a broader autism phenotype in a large population-based twin sample and to ascertain the genetic/environmental relationship between dimensional trait measures and categorical diagnostic constructs of ASD. DESIGN, SETTING, AND PARTICIPANTS We used data from the population-based cohort Twins Early Development Study, which included all twin pairs born in England and Wales from January 1, 1994, through December 31, 1996. We performed joint continuous-ordinal liability threshold model fitting using the full information maximum likelihood method to estimate genetic and environmental parameters of covariance. Twin pairs underwent the following assessments: the Childhood Autism Spectrum Test (CAST) (6423 pairs; mean age, 7.9 years), the Development and Well-being Assessment (DAWBA) (359 pairs; mean age, 10.3 years), the Autism Diagnostic Observation Schedule (ADOS) (203 pairs; mean age, 13.2 years), the Autism Diagnostic Interview–Revised (ADI-R) (205 pairs; mean age, 13.2 years), and a best-estimate diagnosis (207 pairs).
    [Show full text]
  • Autism Diagnosis As Social Process
    Drawing a line in the sand: Autism diagnosis as social process Submitted by Jennie Hayes to the University of Exeter as a thesis for the degree of Doctor of Philosophy in Medical Studies December 2019 Submitted by Jennie Hayes, this thesis is available for Library use on the understanding that it is copyright material and that no quotation from the thesis may be published without proper acknowledgement. I certify that all material in this thesis which is not my own work has been identified and that no material has previously been submitted and approved for the award of a degree by this or any other University. Signature……………………………………………………………………………… 1 2 This PhD project was funded by a Wellcome Trust Investigator Award ‘Exploring Diagnosis’ 3 4 Abstract This PhD explored how clinicians make diagnostic decisions about autism in secondary care. Symptoms of autism are considered to be widely heterogeneous, meaning that decisions about where the diagnostic threshold lies can be challenging. Diagnosis in the UK is usually undertaken by multi- disciplinary teams (MDTs) and can involve numerous stages of decision-making in different contexts across an extended time period. The process of diagnosis is complex and multi-faceted, and can be particularly challenging when cases are considered ‘borderline’ or where there are coexisting conditions. A qualitative approach was used in four studies. A narrative review of twenty- one clinical guidelines was conducted (study one); observation of eighteen assessment team meetings on four sites was undertaken (studies two and three); and sixteen interviews were conducted with clinicians engaged in autism diagnosis (study four).
    [Show full text]
  • Diagnostic Change and the Genetic Makeup of the Autism Population1
    Looping Genomes: Diagnostic Change and the Genetic Makeup of the Autism Population1 Daniel Navon University of California, San Diego Gil Eyal Columbia University This article builds on Hacking’s framework of “dynamic nominal- ism” to show how knowledge about biological etiology can interact with the “kinds of people” delineated by diagnostic categories in ways that “loop” or modify both over time. The authors use historical ma- terials to show how “geneticization” played a crucial role in binding together autism as a biosocial community and how evidence from ge- netics research later made an important contribution to the diagnostic expansion of autism. In the second part of the article, the authors draw on quantitative and qualitative analyses of autism rates over time in several rare conditions that are delineated strictly according to geno- mic mutations in order to demonstrate that these changes in diagnos- tic practice helped to both increase autism’s prevalence and create its enormous genetic heterogeneity. Thus, a looping process that began with geneticization and involved the social effects of genetics research itself transformed the autism population and its genetic makeup. It is by now well recognized that most traits and disease categories do not line up in a straightforward way with characteristics of the human genome ðLock 2005; Wade 2009Þ. Nevertheless, the project of explaining, tracing, 1 This study was conducted with the generous support of the USA-Israel Binational Sci- ence Foundation ðgrant 2010175Þ and a seed grant from the Institute for Social and Economic Research and Policy at Columbia University. We would like to thank the AJS reviewers as well as Peter Bearman, Alberto Cambrosio, James Evans, Uri Shwed, Claire Edington, Daniel Wojtkiewicz, Ayelet Evrony, and audiences at Northwestern © 2016 by The University of Chicago.
    [Show full text]
  • Autistic Adult and Non-Autistic Parent Advocates: Bridging the Divide
    AUTHORS' VERSION Rottier, H. & Gernsbacher, M. A. (2020). Autistic adult and non-autistic parent advocates: Bridging the divide. In. A. C. Carey, J. M., Ostrove, & T. Fannon (Eds.) Disability alliances and allies (Research in social science and disability, Vol. 12, pp. 155-166). Emerald Publishing Limited. https://doi.org/10.1108/S1479-354720200000012011 Chapter 7 AUTISTIC ADULT AND NON-AUTISTIC PARENT ADVOCATES: BRIDGING THE DIVIDE Helen Rottier and Morton Ann Gernsbacher ABSTRACT Purpose: Due to the developmental nature of autism, which is often diagnosed in preschool or elementary school-aged children, non-autistic parents of autistic children typically play a prominent role in autism advocacy. How- ever, as autistic children become adults and adult diagnoses of autism continue to rise, autistic adults have played a more prominent role in advo- cacy. The purpose of this chapter is to explore the histories of adult and non-autistic parent advocacy in the United States and to examine the points of divergence and convergence. Approach: Because of their different perspectives and experiences, advocacy by autistic adults and non-autistic parents can have distinctive goals and conflicting priorities. Therefore, the approach we take in the current chapter is a collaboration between an autistic adult and a non-autistic parent, both of whom are research scholars. Findings: The authors explore the divergence of goals and discourse between autistic self-advocates and non-autistic parent advocates and offer three principles for building future
    [Show full text]