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2021-01-18 Exploring the Self-Reported Experiences of Autistic High School Students
Lebenhagen, Chandra
Lebenhagen, C. (2021). Exploring the Self-Reported Experiences of Autistic High School Students (Unpublished doctoral thesis). University of Calgary, Calgary, AB. http://hdl.handle.net/1880/113000 doctoral thesis
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UNIVERSITY OF CALGARY
Exploring the Self-Reported Experiences of Autistic High School Students
by
Chandra Lebenhagen
A THESIS
SUBMITTED TO THE FACULTY OF GRADUATE STUDIES
IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE
DEGREE OF DOCTOR OF EDUCATION
GRADUATE PROGRAM IN EDUCATIONAL RESEARCH
CALGARY, ALBERTA
JANUARY, 2021
© Chandra Lebenhagen 2021
ii
Abstract
A critical review of the literature indicates that the inclusion of autistic student voice in research and education discourse is minimal, which is problematic because this gap contributes to unethical and often ineffective educational practices and ultimately, poorer education and wellbeing outcomes for autistic students. This study investigated the self-reported school experiences of autistic high school students in
Canada using a critical disability theory framework and a phenomenological informed research lens.
Student perception data were collected using a mixed-method convergent parallel research design where quantitative data (n=72) was collected via an online survey, and qualitative data (n=19 open-ended responses and n=10 email interviews) was collected using an open-ended survey question and a short semi-structured email interview. Participants were recruited via snowball and convenience sampling through provincial and territory autism agencies, self-advocacy groups, parent councils, superintendents of schools, and Amazon’s Mechanical Turk. Quantitative data were analyzed using descriptive statistics, and qualitative interview data were analyzed using inductive thematic analysis. Based on self-reports, this study found that generally, autistic students’ school experiences were unexceptional. However, students reported most favourably on their school experiences when they were made to feel welcome; when they had access to personalized school spaces; when they received support from their peers; and when teachers used flexible and non-stigmatizing pedagogical practices. A unique finding of this study is that over half of autistic participants shared that they preferred to use non-speaking modes of communication to interact with their teachers and peers because typing and drawing helped improve the clarity of their messages and to minimize feelings of stress and anxiety. The implications of this study are that it provides researchers, educators, and autism allies with new information based on “actually autistic” (Craine, 2020, p. 263) experiences, and it offers researchers a methodological framework to improve the authentic participation of autistic people in research. iii
Preface
This dissertation is an original creation of the author, Chandra Lebenhagen. Ethics approval to conduct this study was obtained from the University of Calgary. The Ethics ID for this study is REB19-0185.
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Acknowledgements
With gratitude, I would like to acknowledge the people that contributed to my learning and the completion of my doctoral degree.
First, to my supervisor, Dr. Gabriela Alonso Yanez, you always provided me feedback and direction with kindness and encouragement. Our moments of celebration made me reach farther and I always left our meetings feeling more passionate about research and improving the acceptance of autistic people.
To Dr. Anusha Kassan and Dr. Man-Wai Chu, your feedback strengthened the design of this research and encouraged me to consider different ways to enhance the inclusion of autistic voice in research.
To Dr. Sharon Friesen for your willingness to help guide this study over the finish line and for providing feedback in ways that were both instructive and inspiring.
To my autistic friend and colleague, TC Waisman. For cheering me on as a legitimate autistic ally and for reaching out to offer support and encouragement throughout various stages of my research. I am so thankful that we have become friends and for the knowledge and humour you share.
To my family and friends who were patient with me and gave me time and space to study and write.
Finally, I would also like to acknowledge and express my sincere gratefulness for the students who participated in this study. Your eagerness, vulnerability, and wisdom are inspiring, and you remind me what it is to be human.
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Dedication
This dissertation is dedicated to my mom, who passed away during the data collection phase of the study. You taught me to reach high and to outsmart adversity and failure. Your passion for helping children with disabilities, and those less privileged, stands behind my life work and has weaved itself into the pages I have written.
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Table of Contents
Abstract ...... ii
Preface ...... iii
Acknowledgements ...... iv
Dedication ...... v
Table of Contents ...... vi
List of Figures ...... 9
List of Abbreviations ...... 10
Chapter 1: Introduction ...... 11 Problem Statement ...... 14 Research Question and Purpose ...... 15 Rational and Significance ...... 15 Researcher Perspective and Assumptions ...... 16 Definition of Key Terms ...... 18
Chapter 2: Literature Review ...... 20 Historical Perspectives on Theories and Treatment of Autism ...... 22 Parent Perspectives on Theories of Disability and Inclusion ...... 28 Identity First Perspectives on Autism, Ability and Inclusion ...... 33 A Review of Inclusive Education Policy and Practice ...... 45 A Review of Autistic Students’ School Experiences ...... 49 Chapter Summary ...... 53
Chapter 3: Methodology ...... 54 Researcher Perspective ...... 54 Combining Critical Disability Theory with a Phenomenological Researcher Lens in Autism Research ...... 55 Research Design Overview ...... 62 Recruitment, Research Setting, Participants and Data Sources ...... 63 Data Collection ...... 70 Procedures for Data Analysis ...... 78 vii
Ethical Considerations ...... 81 Validity, Reliability, Trustworthiness, Treatment and Integrity ...... 84 Chapter Summary ...... 87
Chapter 4: Analysis and Findings ...... 88 Quantitative Data Analysis ...... 89 Qualitative Data Analysis ...... 93 Integration of Quantitative Data and Qualitative Data ...... 103 Study Findings ...... 105 Chapter Summary ...... 107
Chapter 5: Discussion, Conclusion, and Recommendations ...... 108 Teacher Characteristics ...... 108 Pedagogical Practices ...... 110 School Environment ...... 112 Peer Relationships ...... 114 Modes of Communication ...... 116 Conclusions and Recommendations for Educators and Policy Makers ...... 118 Benefits of the Research and Considerations for Future Research ...... 123 Limitations and Delimitations ...... 126 Researcher Reflections ...... 127 Conclusion ...... 129
References ...... 130
Appendix A: Timeline of European and Western Historical Perspectives ...... 178
Appendix B: Research Pathway ...... 179
Appendix C: Online Survey ...... 180
Appendix D: Semi-Structured Email Interview Questions ...... 193
Appendix E: Introduction Letter ...... 194
Appendix F: Parent Information ...... 196
Appendix G: Student Information Booklet ...... 199
8
List of Tables
Table 1: Summary of Participant Demographics for the Online Survey ...... 68 Table 2: Summary of Participant Demographics for the Email Interview ...... 69 Table 3: Summary of Survey Items ...... 72 Table 4: Mean and SD of Survey Responses with Four-Point Likert Scale ...... 90 Table 5: Mean and SD of Survey Responses with Five-Point Likert Scale ...... 90 Table 6: Summary of Inductive Analysis ...... 95 Table 7: Integration of Quantitative and Qualitative Data Using Pillar Integration Process ...... 104
9
List of Figures
Figure 1: Summary of Two Phases of Data Integration ...... 79 Figure 2: Illustration of Data Using the Pillar Integration Process (PIP) ...... 80
10
List of Abbreviations
AAC Augmented and Alternative Communication ABA Applied Behaviour Analysis ADHD Attention Deficit and Hyperactivity Disorder APA American Psychiatric Association ARI Autism Research Institute ASA Autism Society of America ASAN Autistic Self-Advocacy Network ASD Autism Spectrum Disorder CBE Calgary Board of Education CDC Centre for Disease Control CCSD Calgary Catholic School Board CCPA Canadian Centre for Policy Alternatives DSM-5 Diagnostic and Statistical Manual of Mental Disorders, 5th edition DTT Discrete Trial Training FDA Food and Drug Administration IDEA The Individuals with Disabilities Education Act ISSAC International Society on Augmented and Alternative Communication LSD Lysergic Acid Diethylamide PIP Pillars of Integration Process PRHR Pragmatic Health Ethics Research Unit PEERS Program for the Education and Enrichment of Social Skills SIB Self-injurious Behaviour TEACHH Treatment and Education of Autistic and Related Communication Handicapped Children
Introduction 11
Chapter 1: Introduction
Controlling and maintaining power over legitimate forms and representation of knowledge between disabled and non-disabled persons is common in current education systems, including day-to-day classroom practices. Destabilizing ableist practices in research and education requires professionals to continually examine their ontological and epistemological positions and how their beliefs become actioned in research. For example, by questioning the language used to describe “norms” and “averages”, and in instruments standardized on the “general population”
(Tremain, 2015, p.5). Encouragingly, even those who are familiar with critical disability studies have begun to evaluate the “foundational assumptions of many disciplines and fields of inquiry, as well as the methodologies that they employ. . . and the epistemological and social positioning of the researchers and theorists invested in them” (Tremain, 2015, p.2). Similarly, educators are beginning to explore the influences of power and oppression in their teaching practice by examining colonized curricula and ableist structures that perpetuate ideas of normal and abnormal student ability.
This study explored the self-reported school experiences of autistic high school students in a Canadian context using a critical disability theory framework and a phenomenological informed research lens. Student perception data were collected using a mixed-method convergent parallel research design, where both quantitative survey data and qualitative semi-structured interview data were collected using flexible synchronous and asynchronous online methods. A novel finding of this study is that over half of survey participants indicated that they preferred to use non-speaking modes of communication and seven out of ten interviewees shared that they preferred typing or drawing to communicate to help reduce feelings of anxiety and to improve the clarity of their messages. Introduction 12
The selection of instruments and the design of quantitative and qualitative research methods were informed by recommendations from the Person-Oriented Autism Research Ethics task force (Cascio et al., 2019), which suggests the following five domains should be considered when conducting research with autistic participants. The domains are 1) Individualization, 2)
Acknowledgement of Lived World, 3) Respect for Holistic Personhood, 4) Empowerment in
Decision Making, and 5) Researcher-Participant Relationship. The novelty and strength of this research is that it builds knowledge based on “actually autistic” (Craine, 2020, p. 263) experiences, which are frequently overlooked, muted or ignored by non-autistic people (Kourti &
MacLeod, 2019).
Additionally, this study applied several human rights principles to minimize power differentials’ negative effect between non-autistic and autistic people (Marshall & Goodall,
2015). For example, specific guidelines and reference terms from the United Nation’s
Convention on Rights of the Child [CRC] (CRC, 2006) were used to inform the development of the student information booklet, consent materials, and options for synchronous and asynchronous participation in the research. The specific standards and comments considered in the design of this study are listed below:
a) Autistic students have their own views and have a right to express their views freely
(Article 12).
b) Autistic students have the right to freedom of expression, including seeking, receiving,
and imparting information and ideas in personally meaningful ways (Article 13); and
c) Autistic students have the ability and right to self-select the least restrictive modes of
communication that authentically represent their ideas and experiences (General
Comment No 9). Introduction 13
Improving the ethical integrity of this research by applying teachings from autistic self-advocacy groups and social justice movements, including “nothing about us, without us” (Chown et al.,
2017), is another way this research sought to minimize the impacts of ableism. I am deeply grateful to my autistic colleague, who provided feedback on various aspects of the research, including recruitment, and selecting questions for the survey and email interview. Lastly, to align with autistic people’s preference for the use of identity-first language (Brown, 2018), “autistics”,
“autistic individuals” and “autistic students” is used throughout this dissertation in place of
Autism Spectrum Disorder (ASD) as termed in the Diagnostic and Statistical Manual of Mental
Disorders, Fifth Edition (DSM-5) (American Psychiatric Association [APA], 2013).
Overview of the Dissertation
The organization of this dissertation includes five chapters: 1) Introduction, 2) Literature
Review, 3) Methods, 4) Research Findings, and 5) Discussion, Conclusion and
Recommendations. The introduction provides a summary of the prevalence of autism and identifies problems that have contributed to the adverse school experiences of many autistic students—subsequently giving rationale and significance for this study. The literature review investigates medical, parent, and first-person perspectives on theories and treatment of autistic people and the subsequent impact on autistic students’ school experiences. Additionally, the justification for using a critical disability theory framework and a phenomenological informed research lens is presented. The methodology chapter explains the benefits of using a mixed- method convergent parallel research design and identifies the procedures used to select research instruments and to complete data collection and analysis. In the research findings chapter, quantitative and qualitative data sets are presented and integrated to answer the research question. Lastly, the discussion, conclusion, and recommendations chapter examine each of the Introduction 14 research findings in the context of inclusion, education, and policy and provides recommendations to assist educators translate research into practice.
Problem Statement
The number of autism diagnoses has increased over 100% in the last ten years (Autism
Speaks Canada, 2018), and current estimates suggest that one in 54, or 1.8% of school-aged children are autistic (Centre for Disease Control [CDC], 2020). Comparatively, The Public
Health Agency of Canada (2018) estimates that 1 in 66, or 1.5% of Canadian school-aged children are autistic. As classroom profiles become increasingly diverse and complex, systems of education have struggled with clear definitions and practices of inclusive education.
Consequently, this lack of clarity has led to less than satisfactory educational and wellbeing outcomes for autistic students (Maciver et al., 2018; Lynch & Irvine, 2009; Majoko, 2016). Most noteworthy is the fact that the perspectives of speaking, minimally speaking, and non-speaking autistic youth are considerably absent from school-based discourse on effective and ethical pedagogical practices to support their learning and social success in school (Woodfield & Ashby,
2016). Critical disability theorists Paterson and Hughes (1999) suggest that this type of exclusion is oppressive because it creates a sense of “homelessness” (p.604) for autistic students who find themselves “excluded from making a contribution to the construction of the social world”
(p.604) they are immersed in. The impact of the exclusion of autistic voices in education and research is evident and possibly reflected in current research that reports many autistic students are unhappy at school (Brede et al., 2017; National Autistic Society Northern Ireland, 2012) and fare more poorly in academic outcomes compared to students without disabilities (Danker et al.,
2016). Introduction 15
Research Question and Purpose
This study includes quantitative (QUAN) and qualitative (QUAL) student perception data using a mixed-method convergent parallel design, to answer the following research question:
What are the self-reported inclusive education experiences of autistic high school students in
Canada?
The purpose of this investigation was first, to learn about the self-reported school experiences of autistic students attending high schools in Canada; and second, to critically examine student-centered knowledge in the context of current inclusive education policy and practice to offer recommendations for improvement.
Rational and Significance
Although there has been an increase in broad-spectrum autism-related research, the majority represents second-hand accounts from medical, educator, and parent perspectives
(Brock et al., 2013; DePape & Lindsay, 2016; Marshall et al., 2015). While second-hand accounts provide diverse and valuable perspectives, this study aims to improve researcher and educator understanding of autistic students’ school experiences based on first-hand accounts and to use this knowledge to advance ethical teaching practices to support the inclusion of autistic students.
As a result of using a critical disability theory framework and a phenomenological informed research lens, autistic students were able to share their school experiences in ways that supported their unique sensory, communication, and mind-body states (Charman et al., 2011).
Supporting autistic students’ authentic participation helped to ensure that the critical discussion of inclusive pedagogies remained connected to autistic students’ knowledge and unique experiences. Thus, the significance of this research is it: Introduction 16
a) Acts as a stimulus for change in non-autistic knowing of autistic experience, as autistic
voice and perspectives become more central in research and education discourse.
b) Acts as a stimulus for change in doing as the inclusion of speaking and non-speaking
autistic voices and perspectives help to inform future inclusive practice in research and
education.
c) Advances the literature on inclusive best practice and generates new research on topics
related to school environments and architecture; teacher education and training on
inclusive pedagogies; curricular adaptions and modifications for autistic students;
assessment of learning for speaking, minimally speaking, and non-speaking autistic
students; and technology supports for autistic students.
d) Offers a methodological example to researchers on how to engage participants who prefer
to use non-speaking modes of communication; and
e) Holds “intrinsic benefits” (Warren, 2007, p. 26) to autistic students because they feel
listened to and valued (Staniszewska et al., 2011).
Researcher Perspective and Assumptions
For twenty years, I have been personally and professionally part of the autism community.
I have family relationships with speaking and non-speaking people. Professionally, I have supported autistic students, their families, their teachers from pre-school to grade 12, and currently develop inclusive frameworks for school jurisdictions and professional learning curricula for educators. Being that I was a doctoral student in Educational Research and
Curriculum and Learning, I did not expect to engage in familiar learning and discourse related to autism and inclusive education. However, I was not prepared for the degree of foreignness I would feel about the content nor my feeling like an outsider within my program. Optimistically, Introduction 17 migrating away from familiar theories and discourse has allowed me to learn new perspectives on learning theories and how our ontological and epistemological beliefs manifest in our decisions and actions towards others. As a result, I developed an interest in exploring critical posthuman and critical disability definitions of humanness related to the treatment and educational experiences of autistic people.
As a result of moving away from my preferred and familiar topic of study, I have a deeper awareness of my ableist biases and their foundations. Consequently, my goals and strategies to reduce potential barriers are more mindful, inclusive, and action oriented. For example, my commitment to include perspectives from the autistic community on the use of deficit-based language and identity-first versus person-first language has helped me to reflect on and re- position my researcher ontological and epistemological lenses. I am also more mindful and committed to defending the creation of ethical spaces to support autistic participants to share their knowledge and experiences in non-conformist ways, including ensuring that there are appropriate and flexible accommodations to support their authentic participation in research. I ultimately see my researcher position not as an authority figure, but as a conduit to help make
“visible the unseen” (Spivak, 1998, p. 285) and to create space for “ambiguity and ambivalence”
(De Schauwer et al., 2015, p.10) in education and research. The following researcher beliefs underscored this study:
1. Autistic students can determine the nature of the investigation to be undertaken and
weigh the benefits of their participation.
2. Autistic students can independently reflect on their experiences and communicate
knowledge in personally meaningful ways. Introduction 18
3. Autistic students can self-select preferred modes of communication that best support their
unique social, communication, and sensory profile.
4. Autistic students will choose the least restrictive space and time to participate in research;
and
5. Readers unfamiliar with the codes of the autistic community may feel a tension between
ableist traditions and autistic knowledge and ideas presented throughout this dissertation.
Definition of Key Terms
Ableism
Ableism is a form of discrimination that devalues persons with disabilities resulting in practices that aim to remediate or cure a person’s disability (Hehir, 2002). Ableism is reflected in social and political attitudes, structures, and systems that implicitly or explicitly limit the authentic participation of disabled people (MTOWN97, 2019). There are numerous instances of ableism in education, such as having stairs leading up to the front entrance of a school, which limits accessibility for students who use walkers and wheelchairs; or using timed tests with students with a learning disability. Interestingly, time is considered by disability theorists
Paterson and Hughes (1999) as “the primary criterion of exclusion and discrimination” (p.605) of disabled people.
Disability Studies and Critical Disability Theory
Disability studies is an interdisciplinary approach used to examine the social, medical, political, cultural, and economic factors that define and stigmatize disability (Dewsbury et al.,
2004). Traditionally, disability theory presents two primary philosophies of disability based on social and medical models, where social conditions create disability and medical conditions create impairment (Paterson & Hughes, 1999). However, critical disability theory challenges the Introduction 19 social/medical distinction to include the sociology of impairment and its connection to politics, economy, and “tyrannies of perfection” (Paterson & Hughes, 1999, p. 607).
Speaking and Non-Speaking Communication
Speaking and non-speaking communication are ways to convey meaning while using a variety of verbal and non-verbal modes (Lebenhagen, 2019). Using the terms speaking and non- speaking does not define a person as verbal or non-verbal; instead, the terms acknowledge that speaking communication may be unreliable due to the influences of internal and external factors
(Zurcher, 2017). Following is an example of an autistic mother who uses non-speaking modes to converse with her son when her speaking communication is unreliable:
A few times I have been annoyed at myself for stuttering and he says “Mommy! Don't ever
be mad at yourself for stuttering!” or, a few times, “Mommy. Stuttering. It’s a way of life.”
I don't not communicate with him, so he does not feel ignored. I use alternative methods of
communicating with him, just not talking. I write, point, use my extremely limited
repertoire of ASL signs. I once was writing to him about what to wear to church and he
wrote back “Yes, mother dearest! (2017, para.12).
Examples of ableism used to defend ideological standpoints, and secure positions of power over autistic people are presented in the following chapter, the Literature Review. These illustrations draw attention to ableist substructures present in current systems of education and everyday classroom practices. Suggestions for policymakers and educators who are interested in transforming exclusionary and oppressive educational practices are offered in Chapter 5, titled
Discussion, Conclusion, and Recommendations. Literature Review 20
Chapter 2: Literature Review
Content, Scope and Organization
This literature review aims to trace the intellectual progression of the field of autism, including historical roots, significant debates, non-autistic perspectives, and identity-first perspectives. Through a critical analysis of the literature, I explore the connection between the non-recognition and misrecognition of autistic people, gaps in current research, and the subsequent impact on the school experiences of autistic students. The literature review is organized into five main sections:
1. Historical Perspectives on Theories and Treatment of Autism
2. Parent Perspectives on Theories of Disability and Inclusion
3. Identity First Perspectives on Autism, Ability, and Inclusion
4. A Review of Inclusive Education Policy and Practice; and
5. A Review of the Inclusive Education Experiences of Autistic Students
This literature review began while completing my final summer residency, where I was required to map the thinking and feeling processes I used while I completed course readings. Over the progression of two weeks, I recorded my responses as I moved through different texts that discussed ethical reflexivity, difficult knowledge, subjectification, oppression, modes of address, and listening to Otherness. While I sensed small changes in my reactions to the readings, it was not until I was able to see the gestalt of my entries that I was able to identify sizeable changes in how I interacted with and responded to the intellectual and psychological content of the readings.
Although I increasingly became frustrated with the lack of a disabled perspective, I was able to see when and where I resisted new and difficult knowledge (Kumashiro, 2002). I also realized that my feelings of frustration were not directed towards the presence of Indigenous, racial, Literature Review 21 gender, and environmental discourse, but instead were a reaction to the absence of familiar disability discourse. While feeling challenged by and appreciative of new learning and my growth, I had increasingly grown lonely for whom I would come to understand as my people, which is “similar to the African idea of 'ubuntu”, as “I find myself in you” (McNiff, 2013, p.51).
As a consequence of moving away, and then gradually returning to my preferred and familiar people and subject matter, I understand the true meaning and benefits of suspended learning (Pitt & Britzman, 2003). By converging with theories and beliefs outside of typical autism discourse, I have come to more deeply understand psychoanalytic theories of listening presented by Todd (2003) and acceptance of Otherness presented by Ahmed (2002); and how these emancipatory actions are relevant to co-creating knowledge with autistic people in research and education. I also understood the commensurability between anti-oppressive research in
Indigenous, feminist and LGBTQ research and critical disability research, specifically autism research. Consequently, this realization of sameness prompted me to explore humanism, critical posthumanism, and critical disability studies. Where theories of humanism are conceptualized as a rigid construct representing binary categories of ability and disability based on mind-body connectedness, perfection, and individualism (Dolezal, 2017; Goodley et al., 2016), critical posthumanism moves beyond the either/or of humanism and posthumanism to include an “array of different posthuman perspectives” (Braidotti, 2016, p.14). Critical disability aligns with critical posthumanism because both contests socially constructed theories of human experience, including theories of ableism (Saur & Sidorkin, 2018); where ableism is described as the beliefs and practices society use to devalue and limit persons with disabilities (Stop Ableism, 2019). My introduction to the study of humanism, critical posthumanism, and critical disability studies Literature Review 22 served as a catalyst for returning to my familiar position of autism ally, however with more mature ontological and epistemological lenses.
My return to autism and disability literature began by searching terms such as the history of autism, non-speaking, identity first perspectives, autistic students’ school experiences, ableism, and critical disability theory. I additionally drew on activist blogs, social media posts, videos, and open access publications. There are several prominent autism scholars and activists I revisited as they provided insider perspectives on social, medical, and research discourse and their perspectives frequently challenged my philosophical stances on the recognition and non- recognition of autistic people. To name a few, these passionate and instrumental people include
Dr. Dora Raymaker from Portland State University, independent UK researcher Dr. Dinah
Murray, and self-advocates Jim Sinclair, Mel Baggs, and Ido Kedar. Finally, I used inductive questioning to recursively explore interconnected macro and micro factors contributing to the current lack of autistic voice in research and education. Where deductive questioning assumes the truth of an answer to be exact, inductive questioning assumes the truth of an answer to be possible (Cohen et al., 2006), which aligns with the exploratory nature of this research.
Historical Perspectives on Theories and Treatment of Autism
The purpose of revisiting the history of autism is to explore how humanist theories of ability and difference have categorically excluded autistic Otherness from humanity (Goodley et al., 2014; Goodley et al., 2016). There are limitations to presenting history in a linear fashion because there is a risk of representing knowledge in repetitive ways, which may reinforce singular and biased perspectives (Pitt & Britzman, 2003; Ellsworth, 1997). While I provide names and dates of people and their contributions in a sequential manner, I also consider a separate sub-section titled Researchers in Context, the broader conditions in which these theories Literature Review 23 were conceived, namely Nazi Germany. The identification and treatment of autistic individuals do not occur in a vacuum but is affected by evolving social, political, and scientific factors. By revisiting and re-examining such factors, the opportunity exists to deepen our awareness of the beliefs and actions that have led to the non and misrecognition of autistic people and the subsequent exclusion of autistic voice in research and education.
Though I mainly focus on Western and European researcher perspectives from the nineteenth century, it is noteworthy to mention that accounts of autistic-like characteristics have been recorded as early as the eleventh century. For instance, it is recorded that St. Francis of
Assisi (1181-1226) tells a story where Brother Juniper cuts off a pig’s foot as a literal interpretation of an act of charity (Trevett, 2009). Additional accounts describe Brother Juniper as being naïve and lacking social intuition (Wing, 1997). In the eighteenth century, Jean-Marc
Itard, a French physician famously known for taking in a feral boy named Victor, described as having social impairments and unusual behaviour such as spinning and rocking (Swinton &
Trevett, 2009; Wing, 1997). These early accounts exemplify long-standing European conceptualizations and evaluations of normative and non-normative behaviours, demonstrating our deep-rooted tendency to categorize people in response to difference.
1910: Eugen Bleuler
The history of autism is commonly presented with the work of Eugen Bleuler, who, in
1910, described the concept of autism as a withdrawal from the external world and a symptom of schizophrenia (Greydanus & Toledo-Pereya, 2012; Verhoeff, 2013). Bleur’s definition of autism, based on the derivative of the Greek word “autos” meaning self (Merriam-Webster, 2020), reflected a different way of thinking observed in autistic individuals (Frith, 1991). Bleur’s Literature Review 24 theories on autistic thinking called into question the legitimacy of humanness in relationship to the psyche and linked medicalized definitions of ability and disability to autism.
1938: Hans Asperger
Austrian, pediatrician, eugenicist and medical professor Hans Asperger published research on what he termed autistic psychopathy (Frith, 1991). Asperger’s description of autistic characteristics included “a lack of empathy, little ability to form friendships, one-sided conversations, intense absorption in a special interest, and clumsy movements” (Attwood,1997, p. 11). Asperger also noted literal-mindedness, anxiety, high speaking ability and, in some instances, intellectually giftedness (Bergenmar et al., 2015). Eventually, the term high functioning autism became synonymous with Asperger’s syndrome. In one of Asperger’s 1939 case studies, Asperger describes interactions between a boy and his mother. Anchoring a portion of his analysis on his belief that women are usually more “emotional than intelligent” (Frith,
1991, p. 41), Asperger concludes that the boy and his mother were equally strange. While
Asperger’s work remained mostly unnoticed in the English-speaking world until it was translated from German to English by Lorna Wing in the 1980s (Wing, 1981), his observations reflected hegemonic definitions of humanity in what Braidotti (2013) describes represents a “male of the species: it is a he. He is white, European, handsome and able-bodied” (p.24).
1943: Leo Kanner
In 1943 Austrian-American psychiatrist and physician Leo Kanner introduced a new psychiatric condition called early infantile autism (Verhoeff, 2013). Interestingly, one of
Asperger’s chief diagnosticians, Viktor Frankl, immigrated to the United States of America and was hired by Kanner in 1937 (Silberman, 2015). Therefore, it can be assumed that Kanner’s work was influenced in part by Asperger’s early research on autism in Vienna. Kanner distanced Literature Review 25 himself from Bleur’s theories of autism (as being a feature of adult schizophrenia) instead, believing autism to be a psychobiological disorder influenced by biological, psychological and social factors (Eisenberg & Kanner, 1956, p.564). Kanner’s research described autistic children as having:
an extreme autistic aloneness ... [a] limitation in the variety of spontaneous activity...
performances [and verbal utterances that] are monotonously repetitious ... the child’s
behavior is governed by an anxiously obsessive desire for the maintenance of sameness ...
[the child has] excellent rote memory (Kanner, 1943, pp. 242-243).
As a result of Kanner’s research, the boundaries of autism expanded to include language and cognitive abnormalities (Verhoeff, 2013). Kanner’s theory on the psychobiological origins of autism also inferred controversial parental causation theories, including maternal coldness and a lack of affection (Eisenberg & Kanner, 1956; Kotsopoulos, 2014). In 1948, Time Magazine published an article on Kanner’s work titled “Medicine: Frosted children” (Time Magazine,
April 26, 1948) describing autistic children as “diaper-aged schizoids” and their parents as “cold perfectionists” (Time, 1948, para. 3; Waltz, 2005). Time Magazine concluded their article with the question, “Were the cold parents freezing their children into autism?” (Donavan & Zucker,
2016), p. 79). Thus, inferring parents, subsequently known as “refrigerator mothers” (Donvan &
Zucker, 2016, p. 88), were responsible for causing their child’s autism. The broad psycho-social impact of Time Magazine’s indiscreet publication on families, particularly mothers of autistic children, was oppressive and harmful. Not only were families publicly blamed for their child’s perceived abnormalities, but mothers were also expected to undergo psychotherapy as part of their child’s remediation (Chamak, 2008; Kotsopoulos, 2014). Literature Review 26
Kanner’s inclusion of language and cognitive differences in identifying autism served to more precisely and consistently exclude autistics from normative categories. Autistic children were commonly categorized according to their “devalued difference” (Goodley et al., 2014, p.
347) or strange ability; either way, they deviated from normative categories of human functioning (Saur & Sidorkin, 2018).
1967: Bruno Bettelheim
In 1967, Austrian-American Bruno Bettelheim published an article titled “Infantile Autism:
The birth of self” (Bettelheim, 1967). In it he writes of a boy whom he describes as a “boy- machine” (p. 235), “a robot” (p. 236) and a “machine powered body” (p. 261) who has built up his defences to protect himself from his “refrigerator mother” (Zager et al., 2012, p.4).
Bettelheim’s theories on autism have not been substantiated by standardized medical or psychological tests (Waltz, 2005) and have since been discredited based on evidence of falsification of academic credentials, plagiarism, and the mistreatment of children (Greydanus &
Toledo-Pereyra, 2012). While Bettelheim’s contributions to theories and treatment of autism have been discredited, history cannot unknow his philosophies and the fact that they represented extreme and sometimes violent theories of ability and difference.
Autism Researchers in the Context of Nazi Germany
As previously mentioned, autism theories do not exist in a vacuum but instead, live in relation to broader social and political contexts. Hence, it is relevant to draw attention to the influential and questionable social and political context of Asperger, Kanner and Bettleheim’s life experiences and how they may have contributed to modern ideas and treatment of autistic people. For instance, all three men were born in Austria between 1894 and 1906. Kanner and
Bettelheim were both Jewish, and Asperger was of German descent. Kanner and Asperger each Literature Review 27 served in the German army with Kanner serving in World War I and Asperger serving in World
War II (Neumärker, 2003). Bettelheim was imprisoned for ten months in a concentration camp, and after the war, both he and Kanner immigrated to the United States (Greydanus & Toledo-
Pereyra, 2012). Additionally, both Asperger and Bettelheim reportedly censored parts of their histories to protect and legitimize their professional identities. For instance, Asperger was accused of sending disabled children to be euthanized during World War II (Hippler & Klicpera,
2003; Scheffer, 2018), and Bettelheim misrepresented his background and credentials to secure professorial and director positions at Universities (Pollack, 1997).
In her book titled Asperger’s Children: The Origins of Autism in Nazi Vienna, Scheffer
(2018) highlights the Third Reich “as a diagnosis regime… obsessed with sorting the population into categories, cataloguing people by race, politics, religion, sexuality, criminality, heredity and biological defects” (p.18), which ultimately shaped Asperger’s theory of autism. In addition to
Sheffer (2018), other scholars have questioned the legitimacy of society’s reverence for the patriarchs of autism. As more publications become translated to English, evidence emerges that autism research existed before Asperger and Kanner’s work. For instance, it has been suggested that Asperger may have known about a female Russian scientist, Grunya Sukhareva’s 1925 publication describing features of autism that are very similar to current DSM-5 descriptions of autism (Zeldovich, 2018). However, Asperger may have avoided crediting Sukhareva’s work not only because she was female but also because she was Jewish, and thus, recognition was most likely not permitted by the Third Reich (Zeldovich, 2018). Without dispute, Europe’s political and social landscape during the first half of the 21st century was fraught with conformist ideologies, ostensibly influencing subsequent and current scientific beliefs on difference, disability, and humanity. Literature Review 28
Parent Perspectives on Theories of Disability and Inclusion
Until the 1960s, medical theories perpetuated ideas that equated difference with a deficit, and many parents were led to believe that an autism diagnosis was a tragedy. Feelings of guilt and loss coupled with questions about the future led to chronic levels of stress, isolation, depression, and in some cases, a diagnosis of post-traumatic stress disorder (PTSD) (Chamak,
2008; Kotsopoulos, 2014). While parents no longer participated in therapy to remedy their autism inducing tendencies, many parents sought therapy to help cope with the complex challenges associated with parenting an autistic child. Parent-scientists held a unique insider position that gave them an advantage in navigating and challenging the medical system from within. For most parents, autism was not a “decontextualized ‘thing’ discoverable by science”
(Verhoeff, p. 444), but a misunderstood and unappreciated feature of their child.
1965: Parent Advocacy
In 1965 Ruth Sullivan, who was told her son’s autism resulted from the lack of bonding during infancy (Zager et al., p. 5, 2012), partnered with parent Bernard Rimland, a research psychologist, and former student of Kanner. Together they established what is now recognized as the Autism Society of America (ASA) (Kirkham, 2017), which aims to increase public awareness and advocate for persons with developmental disabilities and their families (Autism
Society, 2018). Rimland challenged Kanner’s theories of parental causation (Donvan & Zucker,
2016) in his book Infantile Autism (1969). It is here where Rimland theorized autism to be an organic disorder (not a mental or emotional problem) triggered by a confluence of genetic and environmental factors (Frith, 2008; Krause et al., 2002). Two years later, in 1967, Rimland established the Autism Research Institute (ARI), which created the now disbanded “Defeat
Autism Now!” project that supported the discredited belief that vaccines were a cause of autism Literature Review 29
(Eyal et al., 2010). Rimland’s opinions in the autism community were antithetical because while he opposed parental causation theories, he defended that autistic people should remain institutionalized in his publication titled “BEWARE THE ADVOZEALOTS: Mindless Good
Intentions Injure the Handicapped” (Rimland, 1993).
In 1967 a British study reported three-quarters of several dozens of autistic individuals were institutionalized in Britain (Donvan & Zucker, 2016). Institutionalized care was recommended by doctors, suggesting that for a severely autistic child to become less autistic, they should be removed from the influences of parents and home (Chamak, 2008; Chomer,
2014). Like many other institutionalized children with disabilities, autistic children experienced experimental and discriminatory treatment, including lysergic acid diethylamide (LSD). This hallucinogenic drug causes alterations in thoughts, feelings, and awareness, including seeing and hearing things that do not exist (National Institute of Drug Abuse, 2016). Researchers hypothesized that LSD treatments would promote speech, and electric shock treatments would reduce problem behaviour in autistic children (Kirkham, 2017; Sigafoos et al., 2007). In one disturbing account, electric shock was used “To give [a child] something to be anxious about,
[they are] taken to the shock room” (Author Unknown, 1965, p.90). Judge Rotenberg Center is a special needs residential and day treatment program in Massachusetts, USA, where some children with severe developmental disabilities and emotional-behavioural disorders received aversive therapy; in the form of shock-based treatments (Kirkham, 2017). Students wore specially designed “machines that the students carry in backpacks worn around the clock. Wires run from the boxes to electrodes attached to the skin of student’s arms, legs or torsos” (The
Guardian, 2018, para. 13). While the school defended that electric shocks pose “no serious risk to children” (The Guardian, 2018, para. 10), many human rights and disability advocates have Literature Review 30 called for a ban on such practices, including the Autistic Self-Advocacy Network (ASAN, 2018).
An outcome of ASAN’s work and other advocates, the use of electric shock on disabled students, has been banned by the United States Food and Drug Administration (FDA) as of March 2020
(Plater, 2020).
The deinstitutionalization of children was strongly influenced by lobbyists’ work, including Sullivan, who defended that all children had a right to an education (Donovan &
Zucker, 2016). Historically if a child was considered ineducable a school jurisdiction had the authority to refuse education. Sullivan was one of the lobbyists for The Education for All
Handicapped Children, now known as The Individuals with Disabilities Education Act (IDEA)
(Wood, 2016). Eric Schopler, a German-American psychologist, opposed such limiting beliefs, arguing that autistic children were educable, and parents played a central role in their child’s education (Donvan & Zucker, 2016). Although Schopler was not a parent of an autistic child, he was a close and avid parent ally. Schopler is most known for the co-development of an education program for autistic students called Treatment and Education of Autistic and Related
Communication Handicapped Children (TEACCH) (Schopler & Reichler, 1971). The TEACCH program’s effectiveness has become well recognized and respected for its student-centred approach, which provides personalized instruction based on the identification of student strengths (Chamak, 2008; Mesibov & Shea, 2010). The TEACHH program represented a shift in beliefs regarding non-normative ability and possibility for autistic students from both the scientific and educational communities.
Scientist-parent Rimland’s research and advocacy work overlapped with clinical psychologist Ole Ivar Lovaas from UCLA. Lovaas who was a co-founder of the ASA, also believed that autistic children could be taught normalized behaviours by using Applied Literature Review 31
Behavioural Analysis (ABA) (Buch & Lovaas, 1977). Theories of ABA arose from behavioural psychology from the 1910s (Kirkham, 2017) and was first used to condition animals’ behavior, as famously recognized in the work of B.F. Skinner (Kirkham, 2017). Principles of behaviourism were first applied to autistic children in the 1960s where researcher Ferster (1961) “locked an autistic child in a room daily for a year. He refused to attend to the child when it cried, and its tantrums stopped” (Kirham, 2017, p.110). Lovaas continued the work of Ferster and reported that when autistic children received a minimum of 40 hours per week of ABA therapy, approximately 47% achieved normal functioning, 43% made significant progress, and 10% made little progress (Sallows & Graupner, 2005; Kirkham, 2017). However, researchers have disputed these findings arguing a weak methodology, insignificant effect sizes, and that there were no statistically significant differences between outcomes of students who participated in special education programs for non-speaking students and those who participated in the Lovaas method
(Ospina et. al., 2008). Lovaas’ ABA program was made available to parents through his book
Teaching Developmentally Disabled Children: The Me Book (Lovaas, 1981) but was criticized by other scientists and parents for the inhumane use of aversives, also called punishments for incorrect responses made by autistic children (Kirkham, 2017). While many questioned the ethical treatment of autistic children who participated in ABA programs, some saw the program as a lesser of two evils. Some autistic children and adults can exhibit Self-Injurious Behaviour
(SIB), such as eye-gouging and headbanging. Parents feeling helpless and unable to protect their children from conditions causing their children to self-injure, opted for intensive Lovaas ABA intervention, which included the delivery of aversives, such as electric shock, to reduce SIB.
While less intense versions of Lovaas’ early ABA programs continue to be used worldwide,
ABA methods are frequently met with mixed responses. First and foremost, many autistic self- Literature Review 32 advocates consider ABA pedagogy to be abusive, unethical (Chamak, 2008; Gruson-Wood,
2016; Socially Anxious Advocate, 2015) and that it “takes away our voice” (Bascom, 2012, p.182). Ido Kader, a non-speaking young autistic man, recalls ABA therapy as a time of suffering and that he continues to get PTSD flashbacks just hearing the phrases, “High Five!” or
“Good Job!” (Kedar, 2018, para. 2). Secondly, many researchers and scientists continue to believe the benefits of ABA have been exaggerated (Fernell et al., 2015; Weiss & Delmolino,
2006) and that initial claims of effectiveness and cure have not been replicated (Matson & Neal,
2012).
1970: Parents Backed by Research
Lorna Wing, a British mother of an autistic child, psychiatrist and epidemiologist, published one of the first books for parents of autistic children titled Autistic Children: A Guide for Parents (Wing, 1971). Wing also helped establish the National Autistic Society in the United
Kingdom to provide schooling and residential care to autistic children (Donavan & Zucker,
2016). In addition to completing the first epidemiological studies on autism, Wing was primary in having Asperger’s research papers translated from German to English, which provided the basis for considering autism as a spectrum condition rather than isolated disorders in the
Diagnostic and Statistical Manual of Mental Disorders-IV (DSM-IV). Through Wing’s work,
Asperger Syndrome became popularized to label individuals with average to above-average intellectual function but had social, linguistic and sensory processing (Verhoeff, 2013). As a result of translating and extending Asperger’s research and completing the first large scale epidemiological study, Wing’s research broadened the categorization of autism to include a spectrum of abilities rather than isolated disorders (Frith, 2003; Verhoeff, 2013). Wing’s research introduced the concept of triad of impairments, which suggested impaired social, Literature Review 33 communication, and cognitive flexibility as representing the core characteristics of autism (Wing
& Gould, 1979). Uta Frith, a student of Wing’s and a mentor to currently influential autism researcher Simon Baron-Cohen, co-published the first article examining autistic ability and theory of mind (TofM), proposing that autistic individuals have difficulty understanding other people’s implicit beliefs and desires (Baron-Cohen et al., 1985). Frith also suggested that autistic individuals have weak central coherence in that they are more able to process detailed information but cannot integrate detailed information into an integrated gestalt (2003). Frith contested ideas that autism resulted from cold parenting, as suggested by Kanner and Bettelheim, but like Rimland, suggested that autism was rooted in biology. In response to the advocacy of parent-scientists, Kanner eventually responded to the popular refrigerator mother theory suggesting he was misquoted, thus absolving parents of their role in influencing the expression of their child’s autism (Donvan & Zinker, 2016). A summary of the historical perspectives on autism is provided in Appendix A, titled Timeline of European and Western Historical
Perspectives.
Identity First Perspectives on Autism, Ability and Inclusion
Autism Diagnosis
According to medicalized definitions, Autism Spectrum Disorder (ASD) is considered a life-long neurological disorder caused by complex interactions between genetic and environmental factors (Ornoy et al., 2015). The current Diagnostic and Statistical Manual of
Mental Disorders, Fifth Edition (DSM-5) specifies that people diagnosed with autism have impairments in:
a) Social communication and social interaction;
b) Restricted, repetitive patterns of behaviour, interests or activities; Literature Review 34
c) Symptoms must be present in early childhood but usually do not fully manifest until
social demands exceed limited capacities; and
d) Symptoms together limit and impair everyday functioning (American Psychological
Association [APA], 2013).
Like all people, no two autistic people are alike and have varying strengths in communication, social, and behavioural skills (Carter & Scherer, 2013). While there is a significant increase in autism diagnoses, some researchers defend that “diagnostic recategorization toward autism is occurring, potentially confounding estimates of autism prevalence” (Navon & Eyal, 2016;
Polyak et al., 2015). For example, Polyak et al. (2015) reported that autism diagnoses have increased in the United States of America by 331% between 2000 and 2010, while diagnoses related to intellectual disabilities decreased 31%, emotional disturbances decreased 22%, and learning disabilities decreased 19% (Waterhouse et al., 2016). If epidemiological estimates correctly identify 1.5%-1.8% of the population as autistic, then more accurate identification of neurological features, including intellectual disability, is being overshadowed by the over- inclusivity of autism (Lundström et al., 2015). In the context of education, this diagnostic overshadowing potentially impacts student programming, including selecting appropriate supports and strategies to ensure students’ academic and social success.
People diagnosed as autistic frequently have co-occurring conditions, including attention deficit and hyperactivity disorder (ADHD), anxiety, depression, seizures, gastrointestinal issues, and sleep disturbances (Baron-Cohen et al., 2014). Co-occurring conditions such as these put additional stressors on autistic people, further complicating the accuracy of an autism diagnosis which exclusively relies on behavioural observations. An autistic individual’s complex and variable interaction between biology and environment over the lifespan, coupled with intense Literature Review 35 efforts from outsiders to remediate, places significant amounts of stress upon the autistic individual. Up to 65% of autistic adolescents experience anxiety and depression (Attwood,
2004), and 1/300 have contemplated or engaged in self-harming behaviour (Marshall et al.,
2015). Autistic people are also “nine times more likely than the general population to die by suicide” (den Houting, 2020, p.1). Like most adolescents, autistic individuals desire meaningful peer relationships (Williamson et al., 2008). However, they have fewer friendships than non- autistic peers (Locke et al., 2010; Mazurek & Kanne, 2010) and report more loneliness than non- autistic peers (Locke et al., 2010).
Autobiographical accounts on the pressures of having to act normal have been shown to negatively impact an autistic person’s acceptance of self and development of a positive identity
(Humphrey & Lewis, 2008). As a result of being assigned various diagnostic labels and treatment programs, views that equate difference with deficit becomes impressed upon an autistic individual early on in their development. However, in recent years more autistic people are sharing insider perspectives on theories of autism, remediation and cure, which benefits autistic people and their allies by challenging ableist beliefs and practices that protect notions of normality and human ability.
Autistic Self-Advocacy
The Autistic Self-Advocacy Network (ASAN) is a non-profit organization established by and for autistic persons. Their mission is to advocate for the inclusion of autistic voice in matters related to public awareness and policy through their motto “nothing about us, without us”
(ASAN, 2018; Charlton, 2000). ASAN publicly protests one of the most prominent autism advocacy agencies in America, called Autism Speaks. Historically, ASAN has criticized Autism
Speaks’ support for traditional ABA therapies (Kirkham, 2017), a mission to cure autism, and Literature Review 36 funding research in the scientifically discredited belief that vaccines cause autism. Lydia Brown, autistic author and advocate from ASAN shares her perspective on how language shapes her identity and recognition of her autistic Otherness:
…when we say “Autistic person,” we recognize, affirm, and validate an individual’s
identity as an Autistic person. We recognize the value and worth of that individual as an
Autistic person — that being Autistic is not a condition absolutely irreconcilable with
regarding people as inherently valuable and worth something. We affirm the individual’s
potential to grow and mature, to overcome challenges and disability, and to live a
meaningful life as an Autistic. Ultimately, we are accepting that the individual is different
from non-Autistic people–and that that’s not a tragedy, and we are showing that we are not
afraid or ashamed to recognize that difference (Brown, 2011, para. 18).
In the study titled “Which terms should be used to describe autism? Perspectives from the UK autism community” (Buckley et al., 2015) researchers surveyed autistic people, parents, and professionals to better understand their preferential use of person-first or identity-first language.
Respondents included 502 autistic individuals, 1,666 parents/caregivers, and 967 professionals via an online survey. Results show that most autistic persons prefer identity-first language, and parents and professionals prefer to use person-first language (Buckley et al., 2015). Research cited in the same study supports autistic preference for identity-first language because autistics defend that autism is not a disease, but an essential part of their identity (Bagatell, 2010;
Davidson & Henderson, 2010). Furthermore, autistic people sought to be included in normalized linguistic rules where “positive pronouns should precede nouns” (Buckley et al., 2015, p.2).
Autistic participants expanded on their preference for identity-first language by sharing the following: Literature Review 37
I understand the 'I am a person with autism', but I would never say 'I am a person with
brown hair'. I would say, 'I'm a(n) aspie/ autistic’ or 'I'm a brunette'.
Separating the person from their autism is damaging, as it reinforces opinions about autism
being a 'thing’ that can be removed, something that may be unpleasant and unwanted, and
something that is not just another aspect of a whole, complete and perfect individual
human being. Describing oneself as autistic is an extremely important and positive
assertion about oneself, it means that one feels complete and whole as one is (Buckley et
al., 2015, p.7).
Opposingly, parents defended that the person should come first, not their diagnosis (Buckley et al., 2015, p.9) and reasoned that “the person with autism is a person-first and their condition second” and that “we need to describe the individual and ASD as separate entities with the emphasis on the individual not the disorder” (Buckley et al., 2015, p.10). Although professionals also preferred person-first language, they tend to consider the use of language in context. As one professional stated:
When talking to families, I would be very careful not to use certain phrases or labels as I
feel this takes away the individuality of each person. When dealing with professionals in
other agencies, I would use certain 'phrases’ to start to guide expectations of the abilities of
a person, but always reinforced by the individual complexities and abilities (Buckley et al.,
2015, p.12).
While the debate on the appropriate use of identity-first versus person-first language continues, opportunities exist within these spaces to explore how the use of language shapes our “social and ideological beliefs about autism” (Buckley et al., 2015, p.2) and through a critical disability theory framework, protects positions of authority and power over autistic people. Literature Review 38
Autistic Identity
Canadian philosopher Charles Taylor (1992) discusses the oppressive and harmful impact of non-recognition and misrecognition on individual identity formation. Taylor defends that when society perpetually echoes beliefs of deficit, inability and fault onto people, the idea of the self as belonging to humanity becomes distorted (1992), often leading to “internalised oppression” (Barnes & Oliver, 2012, p. 111). As a result of the non-recognition and misrecognition of autistic Otherness as a legitimate way of being human, autistics may question their sense of belonging. Autistic individuals’ perceived lack of social competence and repeated rejection of authentic self contributes to higher reports of anxiety and depression in the autistic population compared to the non-autistic population (Cage et al., 2018; Chandrasekhar & Sikich,
2015).
Taylor goes on to state that the formation of identity is dialogical, in that we use language to understand ourselves and to form our identities (1992). However, in contrast to the previously referenced humanist theory that characterizes oral speech as a representation of reason and identity (Bergenmar et al., 2015; St. Pierre, 2015), Taylor’s concept of language is described as
“not only the words we speak, but other modes of expression whereby we define ourselves, including the languages of art, gestures, of love, and the like” (p.32). Autistic self-advocate,
Amanda Baggs (2012) echo’s Taylor’s concept of language by communicating through her body and through gestures and calls this “the language we already spoke fluently before we learned that words existed, it requires innate, prolonged knowledge of a way of experiencing the world that most people aren't aware of” (p.14).
Literature Review 39
Autistic First Voice: Speaking and Non-speaking Communication
Contemplating the concept of first voice in relation to speaking and non-speaking autistic individuals presents an interesting paradox. Current DSM-5 criteria outline that in addition to restricted and repetitive behaviours, autistic individuals have “persistent deficits in social communication and social interaction across multiple contexts” (American Psychological
Association [APA], 2013). Deficits in social communication skills include idiosyncratic, repetitive and non-use of speaking language. The severity of behavioural and communication deficits ranges from mild, moderate to severe and are assigned Levels 1, 2 or 3, respectively. St.
Pierre (2015) proposes that humanist and posthuman theories view speech as an “enactment of reason and therefore of human identity” (p.332). Applying St. Pierre’s theory against autism diagnostic criteria, autistic individuals would presumably have a limited or null identity dependent on their speaking ability and diagnostic severity level. Foundations of posthuman theory are found in current diagnostic tools, including the DSM-5, used to identify individuals as typical or atypical. Posthuman views on levels of humanness are not only evidenced by the assignment of autistic severity (Levels 1, 2 or 3) but also in the terms used to describe autistic features; including deficit, delayed, impaired, odd, limited, failing, and abnormal (Centres for
Disease Control and Prevention, 2018).
St. Pierre (2015) contemplates the correlation between an individual’s speaking ability and capacity to reason; he frames the tension as such: “oral speech has occupied a dignified position within the humanist lineage, shaping central questions on what it is to be human” (p. 330) and that this modern invention has had “exclusionary consequences” (p. 330). As oral speech has become a privileged representation of reasoning ability (Bergenmar et al., 2015; St. Pierre, 2015; Literature Review 40
Tisdall, 2012), non-speaking autistic voice is frequently ignored, and when listened to, the authenticity of experience and modes of representation are called into question.
Abilities of autistic individuals are commonly measured against standardized cognitive, speech, and motor assessments that are normed on non-autistic ways of being, including thinking, moving and communicating; consequently, “underestimating or overlooking” (Zeliadt,
2018, para 5) autistic ability and intelligence. Coupled with designating autism severity levels, clinicians assign what Bergenmar et al. (2015) call subtypes of humanness.
In his blog post titled “The 3P’s of communication skeptics” (2018b), Kedar shares a similar message stating: “Non-speaking does not mean non-thinking. That’s my mantra. Non- speaking may be caused by motor issues. That’s my message. Motor issues do not cause stupidity. That’s my point.” (para. 1). Kedar goes on to specifically address professionals working in the field of autism, stating:
There is an overwhelming need for professionals to learn about autism from those who live
it and can describe it in words. I am referring to the non-speaking typer who tries to
explain autism from the inside out. There are now quite a few of us, and the number is
growing. Our messages are always the same. Intact mind/disobeying body. Smart
head/dumb body. Thinking mind/non-thinking motor system. Not speaking is not the same
as not thinking (2018a, paragraph 2).
Non-speaking autistic self-advocates challenge posthuman assumptions that equate intelligence with speaking and motor ability and prove that non-verbal speech embodies authentic, vibrant and ordinary experiences (Palen, 2014). Thus, my rationale for not separating and subsequently comparing data sets between speaking and non-speaking participants is guided by the advocacy work of autistic people and understanding the potentially harmful impact on the autistic Literature Review 41 community. However, while contrasting the experiences of subgroups of marginalized people may be productive in some instances, careful attention to avoid object reduction must occur, which might imply ranking or exclusion from the normal human domain (Goodley et al., 2014;
Mladenov, 2014). One-way researchers might avoid object reduction is to use a participatory research approach where autistic people would be equal partners in developing the research question, designing research protocols, collecting and analyzing data, and presenting findings
(Benford & Standen, 2011). Ethical research practices such as this help challenge researchers to shift their “scientific gaze” (Scott-Barrett et al. 2019, p.177) from practices that perpetuate ideas that autism is pathological.
Augmentative and Alternative Communication (AAC)
Between 25% and 30% of individuals diagnosed with autism are non or minimally speaking (Kasari et al., 2014; Tager-Flusberg & Kasari, 2013). The use of alternative modes of communication can be traced back to sixteenth-century Europeans and First Nations peoples of
North America (Wurtzburg & Campbell, 1995). Early Europeans used sign language to communicate with the deaf, and Indigenous people used forms of manual and pictorial language to communicate with tribes who spoke different languages (Wurtzburg & Campbell, 1995). The development of technology based AAC devices began in the early nineteenth century to support individuals with severe physical disabilities, specifically those with cerebral palsy (Vanerheiden,
2002). Transferring assistive communication principles to the autistic population did not occur until the 1960s, where communication boards were used with children using early methods of applied behaviour analysis (Donvan & Zucker, 2016). The United Nations Convention on the
Rights of Persons with Disabilities (2018) defines AAC as methods used to facilitate speech and written communication, including sign language, picture symbols, large print, tactile Literature Review 42 communication, plain language, multimedia, and technologies such as speech generating devices.
For individuals who are considered intelligible (Bergenmar et al., 2015), the use of generated speech allows non and minimally speaking individuals to interact with others.
Applying Foucault’s (1982) theories on how experiences are legitimized, tools such as AAC legitimize autistic experience through speaking language. AAC methods create positive and welcomed opportunities for non and minimally speaking autistic individuals to communicate their feelings, needs, thoughts, and experiences with loved ones and social groups. While AAC provides emancipatory opportunities for autistics to connect with others and verify their selves as intelligent and rational human beings, it is important to recognize the restrictive posthuman structures that underscore several features of AAC devices. For instance, for a non or minimally speaking autistic person to enter dialogue using an AAC, they are first expected to conform to implicitly governed non-autistic speaking modes of address (Ellsworth, 1997). Pre-programmed symbols, pictures and vocabularies predominantly reflect societal preferences for conversational topics and experiences. If an autistic individual wanted to share an experience outside of non- autistic boundaries, such as how he “sees” his mother’s voice (Higashida, 2016, para 6), the opportunity might not exist, or the legitimacy of their experience would be called into question and subsequently corrected as a result of non-autistic experience and dissonance. Subsequently, authentic expression of autistic experience and, by extension, autistic Otherness becomes unrecognized or muted.
While the primary goal of AAC is to facilitate efficient and effective communication
(Beukelman & Mirenda, 2005) and to provide opportunities for non and minimally speaking autistic individuals to share their experiences; the use of AAC also has the potential to decontextualize the autistic individual from their authentic experiences and selves (Taylor, Literature Review 43
1992). Replacing biological communicative preferences with ableist methods risks disconnecting autistic individuals from the authentic ways they represent experiences to themselves and others.
Over time, through repeated mis or non-recognition, communicative biology may be replaced with socially preferred communicative behaviours, essentially denying the authentic self to be viewed as so-called typical (Bergenmar et al., 2015). Thus, the burden of conforming to dominant modes of address (Ashby & Causton-Theoharis, 2009) as well as self-translating experience into “textual thoughts” (Bergenmar et al., 2015, p. 213) is unevenly placed on the non or minimally speaking autistic person.
Naoki Higashida, a semi-non-speaking autistic teenager from Japan, published the book
The Reason I Jump (2016). The original version was published in Japanese in 2007 and has since been translated into thirty languages (Mitchell, 2017). Like many other speaking and non- speaking autistics who have learned to communicate using AAC, Higashida’s reflections on voice and identity are central themes to his writings. Through question and answer format,
Higashida shares his personal experiences of being autistic. Although Higashida describes many challenging experiences, which cause periods of sadness, shame and loneliness, his sharp answer to the question “Would you like to be “normal?” helps destabilize authoritative stances on normativity, cure and conceptions of a meaningful life:
What would we do if there was some way that we could me “normal”? Well, I bet the
people around us-our parents and teachers-would be ecstatic with joy and say “Hallelujah!
We’ll change them back to normal right now!” And for ages and ages I badly wanted to be
normal, too. Living with special needs is so depressing and relentless; I used to think it'd be
the best thing if I could just live my life like a normal person. Literature Review 44
But now, even if somebody developed a medicine to cure autism, I might well choose to
stay as I am. Why have I come around to thinking this way?
To give the short version, I've learned that every human being, with or without disabilities,
needs to strive to do their best, and by striving for happiness you will arrive at happiness.
For us, you see, having autism is normal-so we can't know for sure what your “normal” is
even like. But so long as we can learn to love ourselves, I'm not sure how much it matters
whether we’re normal or autistic p. 45).
Higashida answers several more questions that respond to ableist expectations of legitimate communication, including: “Why do you ask the same questions over and over?” (p.10) “Why do you take ages to answer questions?” (p.18), “Should we listen to every single word you say?”
(p.19), and “Why can't you have a proper conversation?” (p.21). To the last, Higashida’s (2016) responds with:
Please don't judge us from the outside only. I don't know why we can't talk properly. But
it’s not that we won’t talk-it’s that we can’t talk and we are suffering because of it. All on
our own, there’s nothing we can do about this problem, and there were times when I used
to wonder why Non-Speaking Me had ever been born. But having started with text
communication, now I'm able to express myself via the alphabet grid and a computer, and
being able to share what I think allows me to understand that I, too, exist in this world as a
human being (p.22).
Expected and preferred communicative criteria founded in ableist constructs of time, reciprocity, and procedure are reflected in vocabulary such as “a proper conversation” and exemplify a sampling of the many communicative barriers autistic people are faced with. Higashida’s Literature Review 45 introspective abilities and clarity of thought are evident, as are the deep-rooted prejudices that he is expected to overcome to be considered a rationally able human.
Similar to the intense levels of scrutiny experienced by other marginalized groups, including women and racial minorities, the authenticity of Higashida’s writings has been called into question by both abled and disabled skeptics, including well known autistic Temple
Grandin. The controversy specifically relates to the method of facilitated communication, where individuals receive motor support for their typing through gentle arm and hand touches
(International Society on Augmented and Alternative Communication (ISAAC), 2014; Mitchell,
2017). The scientific community defends that the facilitator, not the communicator, creates messages either in part or in full (Ganz, 2014; Montee et al., 1995; Saloviita et al., 2014). While
Higashida was initially trained in facilitated communication, his typing is observed independently produced on a keyboard or a cardboard replica, which he finds less distracting.
Eventually, Higashida’s writings were authenticated by Grandin in her written review (2014) of
Higashida’s book.
Ido and Higashida’s experiences illustrate the tenuous position of AAC being both emancipatory and oppressive. Through self-reports, we learn of the great relief and appreciation for expressing oneself and connecting with others. We also learn that the recognition of people as both autistic and rational is often contingent on the validation of speaking, non-disabled outsiders.
A Review of Inclusive Education Policy and Practice
The concept of integration entered the educational landscape in the 1960s, in response to human rights movements that challenged segregated schooling for people with disabilities
(Göransson & Nilholma, 2014). The right to appropriate and meaningful education is backed by Literature Review 46 law including The International Convention of the Rights of the Child (United Nations in
Convention on the Rights of the Child, 1989) and The Convention on the Rights of the Person with Disability (United Nations in Convention on the Rights of Persons with Disabilities, 2006).
Policies to develop inclusive education policies from a global perspective are guided by what is known as the Salamanca Statement and Framework for Action on Special Needs Education
(UNESCO, 1997). Definitions of inclusion and what it means to be included vary (Artiles et al.,
2006), leading to mixed reviews of best practice. In a systematic review titled “What is meant by inclusion? An analysis of European and North American journal articles with high impact”
(Göransson & Nilholma, 2017), the authors suggest that there is a “conceptual divide” (p. 447) between definitions of inclusive education, where some definitions emphasize placement or
“where” (p.445) students should be, while other definitions focus on the “wellbeing” (p.445) of the student, in the context of social and academic environments. It is worthy to note that research has found that the quality of instruction versus placement of students is the strongest predictor of student achievement (Mitchell & Sutherland, 2020). Critical disability theorists assert that while the objective of integration may be to create a more inclusive society, integration is a modern form of oppression because it aims to purify and normalize through assimilation (Paterson &
Hughes, 1999).
Canadian Inclusive Education Policy. According to a report published by the Canadian
Centre for Policy Alternatives (CCPA) (Towle, 2015), a child’s right to access free education is protected by several international laws, however, “Canada has no federal legislation protecting a child with a disability’s right to inclusive education because education comes under provincial and territorial jurisdiction” (p.5). Provincial interpretation of inclusive education varies, and in some cases, is different between school boards within provinces and territories. Variation in Literature Review 47 terms used to describe Canadian students with diverse learning needs, include: “disability”,
“special needs”, “exceptional needs” and “intensive needs” (Towle, p. 10), further impacting clear definitions and practices of inclusive education. According to research conducted in the province of Alberta (The School of Public Policy, 2016) approximately 1 in 94 children in the
Calgary region have a diagnosis of autism. Data collected from a survey completed by the
Canadian Teachers’ Federation (Froese-Germain & Riel, 2012) found, “the average number of students with a disability per class was 3.5 students” (p.12). Surveyed students were formally identified with behavioural, mental, and physical disabilities and gifted and English/French as a second language students. Students waiting to be diagnosed or students with learning disabilities were not included (CCPA, 2015). Thus, the information provided by the CCPA confirms teacher reports that Canadian classrooms are growing in student diversity and complexity.
Best Practices in Inclusive Education
Research on the best practices of inclusive schools identifies the following six characteristics as being essential: 1. Committed leadership; 2. Democratic classrooms; 3.
Reflective educators; 4. Supportive culture, 5. Engaging and relevant curricula; and 6.
Responsive instruction (Kluth, 2003). Stakeholder views on the inclusive education experiences of autistic students are mixed. While there is a similarity between parents’ and educators’ philosophical beliefs on the benefits of inclusion, both report poor outcomes for autistic students compared to other students with developmental disabilities (Ashburner et al., 2010; Roberts &
Simpson, 2016). One teacher identified barrier is problem behaviour which is known to occur as a result of the interaction between autistic student’s social-communication skills and the school environment (Roberts & Simpson, 2016, p. 1084). However, the most significant barriers impacting the positive, inclusive experiences for both teachers and students is the quality of Literature Review 48 school leadership (Mitchell & Sutherland, 2020), a lack of teacher knowledge and training
(Roberts & Webster, 2020), and the availability of resources to support the specific needs of autistic students (Lindsay et al., 2013).
Missing from these stakeholder perspectives is the inclusion of the self-reported experiences of autistic students, which are essential if educators want to improve their knowledge on how best to co-create conditions for successful inclusion (Conn, 2014; Marshall et al., 2015). Of the vast amount of autism-related research published between 2005 and 2014, more than half of the 18,490 articles retrieved are related to the field of molecular genetics
(Sweileh et al., 2016). Medical research overshadows the small amounts of research that centers on autistic self-reports and frequently disregards self-published literature by autistic self- advocates. As stated by autistic writer, Ido Kedar:
In the six years since my first book, Ido in Autismland was published, only one researcher
ever contacted me to learn about autism from me. That’s kind of pathetic if you think about
it. I'd like to help guide their research on my real symptoms to help improve treatments and
theories. A fair skeptic and inquiring scientific thinker might take the time to meet a
proficient typer, to ask questions, to learn about their journey to increasing fluency. But
they don't, for some reason (Kedar, 2018b, para. 3).
Kedar’s honest calling out of researchers on the lack of responsiveness and interest in seeking first-person accounts of autistic experiences confirms my research’s attentiveness and significance that sought to learn about, thus improving the inclusive education experiences of autistic students.
Literature Review 49
Inclusive Policy and Practice: Is it Working?
While various international organizations including the United Nations, UNICEF, and
UNESCO’s Education for All, have provided countries with definitions of inclusion (Thompson et al., 2015), “no country has yet succeeded in constructing a school system that lives up to the ideals and intentions of inclusion” (Haug, 2017, p.206). This shortcoming is a dilemma between ideas and reality, where countries and educators philosophically agree with the concept of equal educational rights for persons with special education needs, however, are uncertain on how to create inclusive learning environments to respond to the unique needs of various students (Haug,
2017; Messiou, 2019; Mitchell & Sutherland, 2020). Instead, jurisdictional definitions of inclusion have become “masterpiece[s] of rhetoric” (Haug, 2017, p. 207), leading to a “political oversell” (p.207), that puts teachers in positions of unmanageability and failure. Researchers have identified several factors interfering with the unity between theories and practices of inclusive education; two examples are first, teacher confidence and competence (Domović, 2017;
McCrimmon, 2015; Roberts & Webster, 2020; Tangen, 2005); and second, the increase in neo- liberal trends that value individualism, including governments who make school funding contingent on student performance (Haug, 2017). However, opportunities exist to strengthen the practical success of inclusion by combining ideals of inclusion with realties of various schools based on the perspectives of their diverse student populations.
A Review of Autistic Students’ School Experiences
As the prevalence of autism has increased, so has autism-related research; however, most research reflects scientist, medical, educator, and parent perspectives, or second-hand accounts
(DePape & Lindsay, 2016). Furthermore, of the literature that centers on autistic students’ self- Literature Review 50 reports, very few offer flexible methods to ensure the inclusion of non and minimally speaking autistic persons (Lebenhagen, 2019; Woodfield & Ashby, 2016).
Following, I share findings from four noteworthy studies on the self-reported school experiences of autistic students. The first two studies provide a meta-analysis of the topic from
Canadian and Australian researchers; the third study is from the United Kingdom and highlights autistic students’ school experiences in the context of wellbeing. The fourth study, from the
United States of America, pertains to autistic high school students who type to communicate.
Meta-Synthesis 1. DePape & Lindsay’s (2016) study titled “Lived experiences from the perspective of individuals with Autism Spectrum Disorder: A qualitative meta-synthesis” is based out of the University of Toronto, Canada and provides a foundational understanding of the self-reported experiences of autistic people. With 33 out of 2,892 articles meeting inclusion criteria, 17 studies explored the first-hand accounts of autistic students’ school experiences.
Based on the authors’ thematic analysis of the 17 articles, seven themes are identified as essential aspects of autistic students’ school experiences: curriculum workload, boredom, transitioning, sensory issues, routines, unstructured time, and teacher understanding.
Meta-Synthesis 2. In a similar timeframe, Australian researchers Danker et al. (2016) published a study titled “School experiences of students with Autism Spectrum Disorder within the context of student wellbeing: A review and analysis of the literature”. Based on initial inclusion criteria, 272 journal articles were selected for review with 12 articles meeting final selection criteria and four articles specifically related to students’ school experiences. Although results were interpreted in the context of wellbeing, this analysis identified eight themes impacting the school experiences of autistic youth. The eight themes are: a) diagnostic labelling, b) relationships, c) positive/negative emotions, d) professional support, e) teacher qualities, f) Literature Review 51 curriculum-related issues, g) environment, and h) masquerading. While the results are similar to
DePape & Lindsay’s (2016) findings, where both meta-analyses identified issues with teacher and peer relationships, teacher characteristics, curriculum achievement, and environmental factors affecting sensory experiences; there are several issues identified in Danker et al. ‘s (2016) analysis that were not highlighted in DePape & Lindsay’s (2016) meta-synthesis. Including student concerns related to diagnostic labelling, masquerading of autistic symptoms, positive emotions, and depression. While these discrepancies may be attributed to the authors’ analysis of data in the context of student wellbeing, they are important considerations for educators as they evaluate responsive pedagogies to improve the school experiences of autistic students.
Mixed-Method Research: Questionnaire and Semi-Structured Interview. The study titled “Autism and the UK secondary school experience” (Dillon et al., 2016) was not included in either DePape & Lindsay’s (2016) or Danker et al. ‘s (2016) meta-synthesis but provided additional information on students’ self-reported school experiences. This mixed-methods study collected student perception data (n=14) using three questionnaires and a semi-structured interview. The results of Dillan et al.’s (2016) study identifies “four key areas that affect the quality of the school experience for students with autism: social skills, perceived relationships with teaching staff, general school functioning, and interpersonal strengths of the young person”
(p. 221). While the number of participants is an identified limitation of the study, findings suggest that regardless of Westernized country, autistic students share similar concerns regarding their school experiences. Issues related to teacher support, curriculum, learning environment, and social relationships are common.
Interestingly, bullying issues are not identified as a significant theme in either of the two meta-synthesis’ or Dillan et al.’s (2016) mixed-method study. This omission is curious because Literature Review 52 significant research exists that upholds the harmful effects of bullying on the school experiences of autistic students (Maïano et al., 2016). Furthermore, and especially relevant to this study, none of those mentioned above studies explicitly mentions the inclusion of non-speaking autistic students. The apparent absence of non-speaking autistic voice in current research further bolsters this research study’s significance and benefits.
Autistic Students Who Type to Communicate. The study titled “The right path of equality: supporting high school students with autism who type to communicate” (Woodfield &
Ashby, 2016) was not included or referenced in any previously mentioned meta syntheses or UK study. The focus of this study by Woodfield and Ashby was to investigate the strategies and practices teachers use to support the inclusion of autistic high school students who type to communicate. Qualitative interview data were collected from students, teachers, and school personnel, and researchers completed six 80-minute observations of students in class. The first finding noted by researchers is that the success of non-speaking students is dependent on teachers making “space and time” (p.441) for autistic voice. This finding is particularly significant in the context of this research because it reinforces this study’s position on the importance of creating ethical spaces in research. Additional findings from Woodfield &
Ashby’s study emphasizes the benefits of building strong relationships with teaching assistants to ensure student communication success, which includes setting up iPads and accessing printed learning materials. The study concludes by defending that flexible and coordinated teaching approaches are more effective in supporting non-speaking autistic students than educators deliberating over where non-speaking autistic students should be placed in schools. Literature Review 53
Chapter Summary
Notwithstanding decades of research, historical perspectives on the characterizations of autism have remained unchanged until the late nineteenth century. Scientific theories on the etiology and prognosis of autism are rooted in humanist categories of normal and abnormal.
However, ableist ideas and practices that regard autism as a pathological (Chamak, 2008) continue to be vigorously challenged by autistic self-advocates, parents, and allies. A dominant force in the de-institutionalization of autistic children were parent lobbyists who fought for their children’s right for school inclusion. While definitions of inclusive education are guided by several international frameworks, including the Salamanca Statement and Framework for Action on Special Needs Education (UNESCO, 1994), local policies to support students with disabilities are vague, which has contributed to inconsistent and ineffective inclusive education practices amongst school jurisdictions.
Consequently, this tension between the ideals and the reality of inclusive education is possibly reflected in autistic students reporting issues with curriculum, routines, school environment, relationships with teachers and peers, depression, bullying, and receiving adequate support. Most noteworthy is there is minimal research that includes the self-reported school experiences of autistic students and what is available, most reflects the perspectives of speaking autistic students. The exclusion of non-speaking student voice and perspectives is problematic because it highlights ableist practices in research, including beliefs that equate speaking voice with rational voice.
Methodology 54
Chapter 3: Methodology
This chapter begins with an overview of my ontological and epistemological researcher perspectives and a rationale for using a critical disability theoretical framework and a phenomenologically informed research lens in this study. Also included in this chapter are a) description of the research setting, sample, and data sources; b) data collection methods and instruments; c) procedures for analysis; d) ethical considerations; e) validity, trustworthiness, treatment, and integrity; and f) limitations and delimitations of this mixed-method convergent parallel study.
Researcher Perspective
Ontologically, I believe that a person’s perceived reality is based on the interplay between their mind, biology, spirit, and external environments (Guba et al., 2018; Kapp et al., 2013); and external environments include physical, political, economic, and environmental dimensions.
Epistemologically, I understand that what I know about autistic people’s experiences and how I have come to know those experiences is influenced by power differentials between abled and disabled people, which has led to the classification of disabled people based on the perceived value of human differences (Focault, 1988).
Thus, my ontological and epistemological position strongly aligns with a phenomenological lens and critical disability theory’s philosophical approaches. First, I acknowledge the diversity and dimensionality of an autistic person’s lifeworld and that autistic persons’ realities are context-specific and context-bound (Cardiff, 2012; Kajamaa, 2012). I believe that the experiences of autistic people in their own terms are valuable and can provide significant information to transform schools. Secondly, I understand that the classification and treatment of autistic people are influenced by politics and economies of perfection and power. Methodology 55
For this reason, critical disability theory offers a practical approach to better understand the school experiences of autistic students and to provoke change in the day-to-day practices of teachers and operations of schools.
Combining Critical Disability Theory with a Phenomenological Researcher Lens in Autism
Research
Critical Disability Theory
Critical disability theory emerged from the disability rights movement in the 1970s
(Meekosha & Shuttleworth, 2009). Over the decades, critical disability theory has evolved from a social critique of disability to an inter/trans-sectionalist interpretation that examinees disability from interconnected viewpoints, including postcolonial, political, queer, and feminist theories
(Goodley, 2013). The inter/trans-sectionalist elements of critical disability theory allow researchers to consider how “conditions of dominance crisscross in ways that promote values and, simultaneously, justify forms of oppression such as disablism, racism, homophobia and orientalism that negate the existence of Others” (Goodley, 2013, p. 637). Modern disability theorist, Goodley (2013) views critical disability theory as a “location” (p.974), where inquiry may “start with disability but it never ends with it: disability is the space from which to think through a host of political, theoretical and practical issues that are relevant to all” (p.632). One of the valuable aspects of intersectionality within critical disability theory is that it has improved outdated views that have historically equated disability with impairment. Where more recently disability is considered a problem of society (Goodley, 2013), impairments are “object(s) independent of knowledge” (Shakespeare, 2006, p.54); they are elements of a person’s biology that affects people’s lived experiences in static, episodic, degenerative, and terminal ways
(Goodley, 2013). Methodology 56
Phenomenological Research Lens
Contemporary phenomenological research draws on the work of Edmund Husserl’s
(1859-1938) transcendental phenomenology and Martin Heidegger’s (1889-1976) hermeneutic phenomenology (Eddles-Hirch, 2015). Where transcendental phenomenology delves deep into the consciousness of the experiencer to unveil underlying structures of the phenomenon, hermeneutic phenomenology takes an interpretive approach to study the lifeworld of the experiencer (Eddles-Hirch, 2015). Researchers use phenomenology as both a theoretical framework and a research method (Eddles-Hirch, 2015). This study’s application of phenomenology is to integrate elements of its theoretical and methodological strengths.
This approach allows me to design an ethically robust study that centers on a critical disability framework and autistic experience. Additionally, because each theoretical framework has its own unique biases, one framework’s strengths can be used to address the other’s limitations.
For example, phenomenology has been critiqued by critical theorists for its over-reliance on
“medicalised and individualised understandings of disability” (Paterson & Hughes, 2010, p.
597), and critical disability theory has been criticized by feminists and cultural studies scholars for its binary (medical-social) views of disability and impairment (Meekosha &
Shuttleworth, 2009). Thus, to confront tenets of ableism found in phenomenology (Paterson &
Hughes, 1999), critical disability theory is useful because it re-connects the disabled body back into the consciousness of the experiencer (Goodley, 2013). Phenomenology helps confront binary views of disability found in critical disability theory by seeking to understand the essence of the experience of disability and impairment and how people make sense of these experiences in their everyday world (Eddles-Hirch, 2015). Methodology 57
It is interesting to note the political histories Heidegger and Asperger share, namely, their affiliation with the Nazi Party (Petzet, 1993). I draw attention to this fact because it serves as a reminder for us to consider the implications of the epistemological underpinnings of the theoretical frameworks we use and the ensuing effects on knowledge production and the ways we treat people. Charmaz (2012) argues that “standpoints and starting points matter”
(p.14) and Denzin (2008) defends that interpretation of data is inherently political. Essentially our epistemological positions, which are guided by our personal histories, life experiences, and motivations shape both how we do research and what we see (Charmaz, 2012).
Autism Research
Research on the theoretical and methodological approaches used to study the lived experiences of autistic people suggests that phenomenology is advantageous because it “treats participants as experts” (Howard et al., 2019, p.1) and examines knowledge and understanding from first-hand accounts (Lawlor & Solomon, 2017). In a study titled “A systematic literature review on the qualitative methods used for eliciting the views of young people with ASD on their educational experiences” (2017), authors Fayette and Bond (2017) defend that a majority of qualitative studies were unable to elicit the diverse views and experiences of autistic youth because of low methodological quality. However, Fayette and Bond (2017) uphold phenomenology as an appropriate approach to study autistic people’s subjective experiences because of its “commitment to equality of voice and researcher reflexivity” (p.1). Howard et al.
(2019) also argue that a benefit of using phenomenology in autism research is that through researcher reflexivity, researchers can “consider the impact (both positive and negative) of their own experiences and preconceptions on research design and procedures” (p.1). Another positive quality of phenomenology is that it values researcher knowledge and experience, which is Methodology 58 advantageous because it helped to inform the study design and to guide my interpretations of autistic students’ school experiences (Gadamer, 1976). Specifically, I was able to leverage my knowledge and experiences on the benefits of using technology with autistic students to design an online survey that increased accessibility and improved the authentic engagement of autistic participants.
Commensurable with phenomenology’s commitment to researcher reflexivity and equality of voice, critical disability theory is “self-critical and reflexive” (Goodley et al., 2019, p.976) and seeks to reimagine concepts of ability and disability by valuing diversity in lived experiences based on a person’s unique mind-body interactions. Notably, combining a phenomenological research lens with critical disability theory is novel and requires a type of conceptual
“radicalization” (Paterson & Hughes, 1999, p.597). This radicalization involves compelling the researcher and those of us in positions of power to re-construct knowledge based on the views and experiences of differently-abled people.
Thus, combining a critical disability theoretical framework with a phenomenologically informed research lens to explore the self-reported school experiences of autistic students is advantageous for the following reasons:
a) Acknowledging the strengths and weaknesses of each approach increases the
fidelity of the study, including the ethical provision of time and space for autistic
students to authentically share their identity, voice, and interpretations of their
experiences.
b) Including inter/trans-sectionalist perspectives from disability, political,
postcolonial, and feminist theories promotes unity amongst marginalized people Methodology 59
while offering opportunity to recognize and respond to forms of oppression within
and between marginalized groups.
c) Researcher bias and ableist practices are minimized by engaging in evaluation and
self-reflection in each stage of the research process; and
d) Power differentials between researcher and participant are addressed openly, thus
can more likely be minimized throughout the research process.
Online Methods and Autism Research. Autistic space is frequently referred to as another world, and many therapies and interventions have aimed to coax autistic individuals from their world into the real world (Sinclair, 2010). Through self-accounts from speaking and non- speaking autistics, we are challenged to reconsider the perception of autistic space as inferior space. Sinclair (2010), an autistic self-advocate, defends that there are three types of spaces that he lives in- neuro-typical space, one’s own space, and shared autistic space. Sinclair describes the challenges of living inauthentically in neuro-typical space:
Being autistic among non-autistic people is likely to consist of not understanding what
other people are doing or why they are doing it, or what they expect us to do; not being
understood when we ask questions or try to join in, being misunderstood in hurtful
ways…being subjected to noxious stimuli as the price of social participation; and being
expected to maintain a level and pace of participation that is overwhelming and draining
for us (para. 17).
Conversely, Sinclair (2010) defends that “being in 'one’s own space’ means having control over the space itself, over what one does in the space, and over who has access to that space” (para.
19). Methodology 60
Similarly, researchers experienced in conducting studies to elicit the voices of autistic people uphold the benefits of online methods because computer-mediated communication breaks down physical, geographical, and attitudinal barriers and eliminates social environments that impede authentic communication during face-to-face interviews (Benford & Standen, 2011;
Heiskanen & Egerer, 2019; Ison, 2009; Scott-Barrett et al., 2019). Furthermore, online environments are considered a beneficial way to reduce power differentials and strengthen rapport because autistic participants have more control over the research setting and engagement in the research process (Benford & Standen, 2011; Scott-Barrett et al, 2019). Online participation also provides an additional level of anonymity versus face-to-face or telephone interviews, which may encourage autistic participants to “be themselves” (Benford & Standen, 2011, p. 356) when sharing their views and experiences, especially relating to personally sensitive topics (McCoyd
& Kearson, 2006). Research also shows that email is a preferred means of communication amongst autistic people, more than face-to-face communication, even when interacting with friends (Benford & Standen, 2011; Ison, 2009). Reasons for autistic students’ preference for email communication is that computer-mediated communication reduces “social, emotional and time pressures of interpersonal communication” (Benford & Standen, 2011, p.364) and provides more opportunity for autistic students to be viewed as equals rather than for their autistic stereotypes (Scott-Berrett et al., 2019).
Ethical Spaces in Education and Research
Ethical spaces disrupt power imbalances and provide growth opportunities when tension exists between people and ideas (De Schauwer et al., 2018). Creating ethical spaces in research is an epistemological and moral imperative (Ahmed, 2002; Chown et al., 2017) because too often, researchers draw boundaries around people and their experiences (Cariou, 2014). While Methodology 61 qualitative educational research has been criticized for being slow in its use of online research methods (James, 2016), online spaces provide opportunities for autistic students to construct their narratives while minimizing the effects of “time-space compression” (p.154). Time-space compression is viewed by disability theorists to be filled with power, control, and inequality because autistic people are expected to perform according to non-autistic communicative standards (James, 2016). Bowker and Tuffin (2004) suggest that creating ethical spaces in research, specifically through email, empowers participants because they have control over how, when, and where they participate, thus ensuring the relationship between research and participant is more democratic (James, 2016).
Ethical spaces offer opportunities for ethical listening, which works to minimize the objectification of the speaker and subject through “dividing practices” (Foucault, 1982, p. 777).
Listening to the ideas and experiences of autistic people requires that researchers attend to and value multiple forms of communication, including uncustomary sounds, symbols, gestures, rhythms, and repetitions. Stuart Murray, researcher and parent of a non-speaking autistic child, stated, “Autism is frequently talked about, but it is rarely listened to” (p. XIII). In the absence of ethical listening, researchers and educators potentially misrecognize or conversely, fail to recognize (Couthard, 2014) the experiences and personhood of autism.
Consequently, these mistakes in recognition lead to feelings of exclusion, self-doubt, loneliness, and depression (Rosa & Mountian, 2013). When neuro typical developing children feel recognized by teachers, they report an increased sense of wellbeing, including a positive sense of self, security, and agency (Foley et al., 2011). Unlike their peers, and despite being characterized by social-communication impairments, autistic students also benefit from being listened to, including increased rates of school participation, academic success, and overall Methodology 62 school satisfaction (Saggers et al., 2011; Saggers, 2015). Teachers who create ethical classroom spaces, and model ethical listening practices, create safe opportunities for students to express themselves and celebrate diversity in their peers. Unsurprisingly, teachers who engage in ethical listening are more knowledgeable about their students’ strengths and needs and can effectively identify and use adequate supports and strategies (Saggers, 2015; Woodfield & Ashby, 2016).
Research Design Overview
Student perception data was gathered through a mixed-method convergent parallel research design. Mixed-method convergent parallel means that quantitative and qualitative data were collected in a similar timeframe, analyzed separately, and then merged for more in-depth analysis (Fetters et al., 2013). The benefits of using a mixed-method design are the strengths of one method help to overcome the weaknesses of the other, the validity of the data is increased through triangulation, and through data integration, strong evidence is available to draw conclusions (Greene et al., 1989; Mayoh & Onwuegbuzie, 2015). Methods used to collect quantitative and qualitative data align with critical disability theory in that flexible opportunities for participants to self-select their preferred time and mode of engagement were supported through asynchronous (online survey) and synchronous (email interview) platforms (Friesen et al., 2019). Quantitative survey data (n=72) were analyzed using descriptive statistics, and qualitative data (open-ended survey response n=19 and email interview n=10) were analyzed using inductive thematic analysis. Quantitative and qualitative data were given equal priority
(QUAN+QUAL) and upon completing separate initial analyses, quantitative and qualitative findings were merged using a joint display technique called the Pillar Integration Process (PIP)
(Johnson et al., 2019). The PIP provided a rigorous four-stage method to integrate QUAN and
QUAL findings to generate wholistic insights into the school experiences of autistic students and Methodology 63 to clearly identify instances of discrepancy or variance in students’ experiences (Johnson et al.,
2019).
Recruitment, Research Setting, Participants and Data Sources
Recruitment
People with disabilities are often overlooked in research because flexible recruitment strategies and accommodations are not provided (Aldridge, 2007) and tensions between protection from harm and the right for autonomy (McDonald et al., 2013). Research shows that disabled participants prefer to enlist the support from familiar people “to help them assess the value or appropriateness of participation” (McDonald et al., 2013, p. 220) and accessing support helps to increase their contribution to the research (McDonald et al., 2013). Upon receiving ethics approval from the University of Calgary’s Conjoint Faculties Research Ethics Board
(CFREB), the first recruitment phase began. A convenience sampling method was used (Steward et al., 2018), specifically, snowball sampling (Lewis-Beck et al., 2004; Kenny et al., 2016) by sending an email (see Appendix E) to publicly available contacts at provincial and territory autism stakeholder groups (Autism Manchester, 2017; Baltar & Brunet, 2012; Cage et al., 2018).
Three attachments were included in the introductory email: first, a parent information letter (see
Appendix F); second, a Student Information Booklet (see Appendix G) that provided an in-depth summary of the research, including information related to the purpose of the study, benefits, and risks of participation, eligibility requirements, consent process, details of the online survey and email interview, and contact information; and third, a social media image of the research invite was also included if the agency decided to share the research invite. All recruitment emails were logged in a tracking form, which included the agency, superintendent or parent council’s contact name, the date email was sent, and the date and type of response received. Methodology 64
Careful consideration was also given to the individual needs of participants who completed the email interview. Interview times were accommodated to support participant schedules, including personal work schedules and time zones. Additionally, the wording used in email correspondence and during the interview was stated clearly and positively to build trust and convey researcher enthusiasm. Re-assuring phrases such as “to the best of your ability”, “take as much time as you need”, and “you are welcome to take a break” were also used. A form of online listening helped to monitor “conversational tone” (Benford & Standen, 2011, p. 362), including participant stress, disinterest, and misunderstanding, and to maintain a safe and positive online space for participants. For example, at the start of an interview a participant shared before answering the first question “Just want to let you know that I am starting to answer the questions. I will get back to you as soon as I can” and immediately after providing his response, he stated “Sorry I am a slow typer. If you have more questions don’t worry about the time and I will get back to you”. Which conveyed to me that the participant was concerned about my perception of his engagement in the research because he perceived himself to be a “slow” typer. Therefore, in attempt to minimize pressure on the participant to respond quickly, I used reassuring phrases throughout the interview and avoided using compound questions. All email participants were thanked and commended for their responses, and following notification of the end of the interview, participants received an e-gift card to thank them for their time and participation.
Revisions to Recruitment Procedures
Due to continued lower than anticipated response rates, two revisions to this study were approved by CFREB. The first revision was made to include school superintendents and parent councils in snowball sampling methods, which resulted in one superintendent of a private school Methodology 65 sharing the research invite to students following school-board ethical approval. The second revision occurred to use convenience sampling (Berinsky et al., 2012) through Amazon’s
Mechanical Turk (MTurk). Although not frequently used in autism research, MTurk is a reliable crowdsource platform to access research subjects. MTurk has been used in research since 2005
(Buhrmester et al., 2011) and has been described as an effective method to recruit hard-to-reach populations, including those with disabilities (Anderson et al. 2019; Smith et al., 2015). The
MTurk posting closed within 24 hours because the maximum of 50 survey completes was reached, with two additional surveys completed after access via MTurk was closed. Participants from MTurk received two dollars for completing the online survey and a twenty-five-dollar
Amazon e-Gift card for participating in the 30-minute email interview. This additional compensation was deemed fair and reasonable by CFREB and successfully increased participant interest in the research, which was an identified issue in Phase 1 and Phase 2 of the research.
Recruitment for quantitative data collection ended once 70 surveys were completed, and recruitment for qualitative data collection ended once ten semi-structured interviews were completed. The total number of participants for both the survey (n=72) and email interview
(n=10) were slightly higher than targets identified in the research proposal, which initially identified 65 participants to complete the online survey and five to seven participants to complete the semi-structured email interview. The minimum number of participants required to complete the survey was determined by estimating that five participants from each province and territory would complete the survey. The target number of participants was informed by comparative studies presented in the literature review and my own research experiences, specifically working with the Worktopia: School Works Canada research project (Worktopia, 2020). The decision to Methodology 66 end quantitative and qualitative data collection was informed by recruitment targets met after 12 weeks of recruitment and an expended budget for participant compensation.
Research Setting
Participants responded to the online survey and email interview questions from their “own space” (Sinclair, 2010, para.9), which included their home or familiar and comfortable community setting where they had access to a computer, smartphone or tablet and the internet.
As previously stated, providing an opportunity for participants to share their experiences from their own space is empowering because it allows for autistic participants to “gain visibility and invisibility at the same time-claiming a voice without having to claim a body” (Parsloe, 2015, p.340). Additionally, participant access to individually owned spaces supports self-determination regarding when and how long participants will engage in the research (Tavassoli et al., 2014).
Having participants respond from institutional settings including schools, was discouraged as to avoid any associations related to confidentiality, power, control, assessment, and appropriate answers and behaviour (Holloway & Valentine, 2000). Also worth noting, students could independently access familiar supports if required (Nicolaidis et al., 2013). Supports may have included a family member, support worker or friend who assisted with physical navigation, reading the questions aloud or completing online scribing of participant responses. Therefore, the selection of asynchronous and synchronous methods used in this study aligns with critical disability theory on how to elicit first-hand accounts from disabled participants because the methods are responsive to the self-identified preferences for social and communicative engagement of autistic people.
Methodology 67
Participants
Eligible participants were Canadian citizens between the ages of 15 and 21 years old and completed a minimum of one year of high school in Canada. Participants who completed the online survey via Amazon’s Mechanical Turk also met eligibility conditions based on the demographic information they entered when registering for their Amazon MTurk accounts.
Participants self-reported having a diagnosis of Autism Spectrum Condition (ASC), Asperger’s
Syndrome (AS) or Pervasive Developmental Disorder-Not Otherwise Stated (PDD-NOS).
Participants self-identified as speaking, non-or minimally speaking, or comfortable using non- speaking modes of communication to participate in the research. Participants required access to technology, including a smartphone, tablet or a computer, and the internet to participate in the survey and the email interview.
Demographic Summary of Survey Participation. This study comprised of three phases of data collection. In Phase 1, 108 emails were sent to various provincial and territory autism agencies, and self-advocacy groups. In Phase 2, 155 emails were sent to provincial and territory autism agencies, self-advocacy groups, and superintendents of schools. In Phase 3 one posting was made on Amazon’s MTurk. After three phases of data collection a total of 70 surveys were completed in full and one survey was 63% completed, and another survey 46% completed. Thus,
72 surveys were included in quantitative data analysis. Three surveys were removed from count because one respondent completed the survey twice, and Qualtrics identified two surveys as spam. Overall, most participants resided in Ontario (n=23/72 or 32%), British Columbia
(n=20/72 or 28%), and Alberta (n=15/72 or 21%). Slightly more than half of the participants completed grade 10 (n=40/72 or 56%) and most identified with ASC (n=53/72 or 74%). Slightly over half of the participants identified as male (n=40/72 or 56%), 36% (n=26/72) identified as Methodology 68 female, and 5% identified as non-binary (n=3/72) or queer (n=1/72). The larger representation of males is likely attributed to diagnostic gender bias, where three males for every one female receives an autism diagnosis (Loomes et al., 2017). Slightly more than half of the participants
(n=41/72 or 57%) preferred non-speaking modes of communication such as typing (n=37/72 or
51%) or other (n=4/73 or 5%), which included drawing and art. Most students indicated that they were motivated to participate in the research because of a chance to win a gift card (n=34/72 or
47%), and nearly a quarter of participants (n=17/72 or 24%) received support to complete the survey. Table 1 provides a summary of participant demographics for the online survey.
Table 1
Summary of Participant Demographics for the Online Survey
Phase 1 Phase 2 Phase 3 Total % Target Community Autism Agencies School Amazon’s and Self-advocacy Superintendents Mechanical Turk 3 n/a Groups and Parent Councils Recruitment Emails Sent 108 155 1 posting 264 n/a and Impact Survey’s Completed 12 8 52 72 n/a Location of BC, AB, ONT BC, AB, ONT, BC, AB, SK, MB, 8 provinces n/a Participants NFLD, YKT ONT, QC, NFLD, 2 territories NS, NWT, YKT Gr. 12 2 3 10 15 21% Grade Gr. 11 3 3 11 17 24% Completed Gr. 10 7 2 31 40 56% Autism Spectrum Condition (ASC) 12 4 37 53 74% Asperger’s Syndrome 3 3 9 15 21% Diagnostic (AS) Identity Pervasive 1 1 6 8 11% Developmental Disorder (PDD) Female 3 2 21 26 36% Gender Male 7 3 30 40 56% Identity Gender Queer 1 0 0 1 1% Gender Non-binary 1 1 1 3 4% Speaking 7 4 20 31 43% Comm. Typing 3 2 32 37 51% Preference Other 2 2 0 4 5% Gift Card 12 2 20 34 47% Reason for Incl. speaking/ non- 7 3 16 26 36% Participating speaking Share experiences 2 4 20 26 36% Support Yes 5 2 10 17 24% Received No 7 6 42 55 77%
Note: Terms cisgender male and cisgender female would have been more appropriate terms to use in the Gender Identity section of the survey. Methodology 69
Demographic Summary of Email Interview Participants. Of the 10 participants who completed the interview, three participants shared that they preferred to speak to communicate, six participants shared that they preferred to type to communicate, and one participant shared that they preferred to draw to communicate. Only participants (n=6) who identified typing or another non-speaking mode of communication (n=1), as their preferred mode of communication, were asked to expand on their preferences for using non-speaking communication. Participants from the email interview were randomly assigned pseudonyms at the start of data analysis.
Assigned pseudonyms were not approved by participants and may not reflect their cultural or gender identity. Table 2 provides a summary of participant demographics for the email interview.
Table 2
Summary of Participant Demographics for the Email Interview
Charlie Armani Kai Azariah Frankie Sam Taylor Alex Zia Lennon Location of the BC BC ONT ONT BC BC AB BC BC BC Participant Grade 12 12 11 10 12 12 11 11 12 11 Completed Diagnostic ASC ASC AS ASC ASC ASC ASC ASC ASC ASC Identity Communication Speaking Speaking Speaking Typing Typing Typing Typing Typing Typing Other Preference
Data Sources
Four primary sources informed the selection of the quantitative data collection instrument and qualitative interview questions: 1) The Panorama Survey (Gehlbach, 2014); 2) The Person-
Oriented Autism Research Ethics (Cascio et al., 2019) task force recommendations on how to design ethical studies that are responsive to the strengths and needs of autistic people; 3)
Research by Nicolaidis’(2013; 2015) that highlights best practices to adapt instruments to be more accessible to autistic individuals; and 4) Literature on student perception surveys including Methodology 70 publications, “Student perception surveys for K-12 teacher evaluation in the United States: A survey of surveys (Geiger & Amrein-Beardsley, 2019) and “Instruments for obtaining student feedback: A review of the literature” (Richardson, 2005). Together these sources helped to support the authentic participation of autistic students and ensure that perception data relating to social, emotional, sensory, and learning experiences originated from student reflections opposed to teacher and parent observations.
Data Collection
Quantitative Data Collection: The Panorama Survey
The Panorama Survey (Gehlbach, 2014) is a free and open-source survey developed by a research team from the Harvard Graduate School of Education (Geiger & Amrein-Beardsley,
2019). The Panorama Survey (Gehlbach, 2014) consists of two main categories of scales, the first category relates to classroom and teaching, and the second category relates to the school in general. Each category consists of 10 scales that school organizations can select from, depending on their needs and context. The ten scales are classroom climate, engagement, grit, learning strategies, mindset, pedagogical effectiveness, rigorous expectations, school belonging, teacher- student relationships, and valuing of the school. The Panorama Survey (Gehlbach, 2014) was selected for three main reasons: 1) Its robust design to gather student perception data on their educational experiences; 2) Its explicitly stated customizable features; and 3) The authors of the survey are experts in education and have extensive experience in developing scales in education
(Geiger & Amrein-Beardsley, 2019). The Likert style questions apply to students from various socio-economic backgrounds, in grades 6-12 who attend public, independent or charter schools.
To minimize error and to build construct validity, the Panorama Survey (Gehlbach, 2014) was developed through a six-step design process including 1) Literature review; 2) Interviews Methodology 71 and focus groups; 3) Synthesis of indicators; 4) Item creation; 5) Expert review; and 6) Cognitive pre-testing and interviewing (Gehlbach & Brinkworth, 2011). The authors of the Panorama
Survey (Gehlbach, 2014) used a rigorous testing approach (i.e. two large scale pilot studies) to ensure their instrument and scales measure the psychological attributes they are intended to measure (i.e. their psychometric properties 19-module instrument). Reliability ensures that the survey item consistently draws the same response from students in similar conditions and differences can be attributed to different student perceptions of their experiences. Structural validity examines if the items in each scale measure one or multiple underlying factors. Each of the ten survey scales have strong coefficient alpha, with each scale being 0.70 or greater and sound structural validity established through confirmatory factor analysis (Panorama Education,
2015). Finally, in both pilot tests, different forms of the survey were presented to random samples of students to test phraseology and comparisons to other well-known scales. Test results indicated strong discriminant and convergent validity (Gehlbach, 2014; Panorama Education,
2015). However, similar to other student perception surveys, peer-reviewed research on the
Panorama Survey (Gehlbach, 2014) is minimal (Geiger & Amrein-Beardsley, 2019).
For the purposes of this study, 18 survey items were selected from eight survey scales and were chosen based on their likeliness to gather student perception data from autistic students to answer the research question. Cronbach’s alpha was used to test scale reliability. A value of 0.7 to 0.95 is considered acceptable (Tavakol & Dennick, 2011). Chronbach’s alpha test in SPSS was used to identify the reliability of survey items. The survey items have relatively high internal consistence because the calculated alpha coefficient of the 18 survey items is 0.825. A summary of the 18 survey items is provided in Table 3.
Methodology 72
Table 3 Summary of Survey Items
Description Survey Items
Student perceptions of the quality of 1. How often do you receive feedback at school? teaching and learning. 2. How comfortable are you asking questions about what you are learning? How much students feel that school is
interesting, important, and useful. 3. How interesting is school? How attentive and invested students are 4. How excited are you to go to school? in school. 5. How eager are you to participate in your classes? How much students feel that their 6. How often do your teachers take the time to ensure you understand the teachers hold them to high expectations material? around effort, understanding, 7. How much do your teachers encourage you to do your best? persistence, and performance in class. How strong the social connection is 8. Overall, how high are your teachers’ expectations of you? between teachers and students within 9. How many of your teachers are respectful towards you? and beyond school. 10. How many of your teachers would you be excited to see again in the future? How much students feel that they are 11. Overall, how much do you feel like you belong at your school? valued members of the school 12. How well do peers at your school understand you as a person? community. Perceptions of student physical and 13. How much respect do your peers in your school show you? psychological safety while at school? 14. How often do you worry about bullying at school? 15. How often do you worry about online bullying? Perceptions of the overall social and 16. How fair or unfair are the rules at school? learning climate of the school. 17. How pleasant or unpleasant is the physical space at your school? 18. How positive or negative is the energy at school?
To increase accessibility to the survey questions and to support the authentic engagement of autistic participants, the following survey accommodations were made (see Appendix C):
a) Adaption from a paper format to an online format, thus aligning with research that shows
autistic individuals prefer electronic communication over other forms (Kourti &
MacLeod, 2019; Scott-Bennett et al., 2019).
b) Vocabulary on five of the survey items was slightly modified to ensure that questions
were contextually meaningful, concise, and concrete (Nicolaidis et al., 2013; Kenny et
al., 2016). For example, the original question “How excited are you to go to this class?”
was changed to “How excited are you to go to this school?”.
c) Survey items were presented in a low-stimulating visual format supported by visual cues
(Scott-Bennett et al., 2019); and Methodology 73
d) Invitations for participants to access familiar supports to participate in the research and
reduce potential feelings of stress were included (Nicolaidis et al., 2013).
Qualtrics. Quantitative survey data were collected using Qualtrics, an online survey program made accessible by the University of Calgary. The highly customizable features of
Qualtrics allowed for the design of a user-intuitive, visually engaging, and textually minimal survey. Each survey question was displayed on a separate page with an image to assist with comprehension and improve interest. At the bottom of each page was a survey completion bar to inform participants of their progress. Study information and consent forms were available online and for download at the beginning of the survey. Participants who completed the survey could also voluntarily provide an email address to enter a draw to win an online $50 Amazon e-gift card. Qualtrics recorded the average completion time by participants as approximately nine minutes. All survey responses are stored, and password protected in Qualtrics for five years.
Qualitative Open-Ended Survey Responses
One open-ended question was included at the end of the survey to invite participants to share additional information on their school experiences that may not have been collected through survey items. A total of 19 participants completed the open-ended survey question, and one of the 19 participants also completed the semi-structured email interview. Overall, students’ open-ended responses provided personal opinions on liking or not liking school, such as “yes My
School Life is Wonderful Enjoying Very Much” or “School was a horrible experience. IT was not until i was 18 that they discovered i was autistic.” Most open-ended responses averaged 32 words or two sentences in length and the most extended response was 176 typed words. All open-ended survey responses are included in the qualitative data analysis and are password protected within Qualtrics for five years. Methodology 74
Qualitative Semi-Structured Email Questions
After completing the online survey, participants were invited to be part of a synchronous
30-minute semi-structured email interview. Participants consented to participation by voluntarily providing their email address within Qualtrics. Once participants provided their email addresses, they were contacted by me via email to review the semi-structured email interview format and to set up a mutually convenient time to complete the interview. Based on the first interviewee’s response, I learned that beginning the interview with an open-ended question may have been too ambiguous and perhaps inadvertently placed pressure on the participant to lead the interview. For example, in response to the following opening question:
First, is there anything that stands out for you that you would like to share about your
school experiences that were not captured by completing the survey? This email interview
is flexible, so we can talk about whatever may be important to you or I can start with a
couple of questions based on the survey.
The participant replied, “I am not really sure. I've had a lot of school experiences so nothing jumps out at me immediately. Do you have any topic suggestions or questions?”. Thus, in response to participant feedback, the semi-structured email format was adapted to enhance student engagement. This adjustment is an example of how researcher reflexivity was used to guide the succeeding structure and style of the semi-structured email interview. Bryman and
Cassell (2006) describe this type of researcher response as cultivated reflexivity. Researchers make responsive decisions to make interviews more meaningful to participants, which requires researchers to be both an observer and a participant during the interview process (Scott-Barrett et al., 2019). Henceforth, each subsequent interview began with a question based on a survey item along with an openness towards student led topics. For example, when a participant shared that Methodology 75 he liked the gymnasium’s openness, I followed by asking him about the type of activities he liked to do in the gym. Also, when required, interview questions were altered to support students’ comprehension of the question. For instance, when asked a question about peers, a participant replied, “could u ask me the same question again but with using different words. I can't really get the question”. To ensure ongoing assent, participants were informed of the time left in the interview and were asked if they wanted to continue the interview. Additionally, I would provide encouraging statements at the beginning, and throughout the interview, such as
“Please don't feel rushed, take as much time as you need to respond”; and to conclude the semi- structured email interview, I would make a statement such as “Thank-you Zia, your answers are really informative, and I appreciate you sharing with me. I want to be respectful of your time, so
I will end the interview here unless you would like to share more?”.
Semi-structured interview questions were based on survey items (see Appendix D).
Participant’s survey responses were not reviewed before conducting the interview. However, participants’ communication preferences identified in the survey’s demographic portion were reviewed before conducting the semi-structured interview. The reason for reviewing a participant’s preferred mode of communication before the email interview was to ensure that researcher questions and the ensuing discussion were not structurally presumptive towards speaking communication and to provide an opportunity for participants to expand on their communicative preference, should they wish. Based on survey items, four main questions provided a flexible framework to guide the semi-structured email interview. These questions were selected based on significant themes identified in the literature review combined with my professional knowledge and experience working with autistic students. In most instances, not all the same questions were posed to participants. Instead, topics of discussion raised organically by Methodology 76 participants were followed. The four main questions that were used to initiate and guide the interview are:
1. What school spaces are the most calming for you?
2. Describe a time where you felt respected by a peer?
3. In your opinion, what are the characteristics of a great teacher?
4. Can you tell me more about your preference for non-speaking communication?
Since the interview was conducted via email, which included markers of dates and times, no additional transcription was required. While the average time to complete the interview was 35 minutes, the most extended interview took two hours, where the participant apologized for being a “slow typer” and stated, “if you have more questions, don't worry about the time and I will get back to you”. The average word length of email interview responses was 331 words. The minimum number of typed words was 222, from a participant who indicated that their preferred mode of communication was typing, and their interview time totalled two hours. The maximum number of typed words was 459, from a participant who indicated that their preferred mode of communication was speaking, and their interview time totalled 30 minutes.
The difference in typed words between the participant who stated they preferred to type to communicate (typed 222 words in two hours) versus the participant who indicated they preferred to speak to communicate (typed 459 words in 30 minutes) highlights the diversity in autistic presentation and ability in relation to ableist concepts of time, and should serve as a reminder to researchers to avoid making assumptions and generalizations on autistic ability based on time and communication preferences. Additionally, the length of typed responses might be viewed as small and insufficient by some researchers; however, the length of students’ email responses does not reflect the quality or validity of data (Heiskanen & Egerer, 2019). Participants received Methodology 77 a $25 Amazon e-gift card immediately following the interview. All email transcripts are password protected and encrypted in a digital file that is accessible only to me and will be destroyed after five years.
The advantages of providing two separate opportunities (open ended survey question and email interview) for autistic participants to share their personal perspectives on their school experience are:
a) Students interested in completing only the survey portion of the research could provide
additional information in the open-ended survey question; and
b) Students interested in sharing in-depth experiences via virtual social engagement could
volunteer to participate in the email interview and receive compensation.
Importantly, the separation of quantitative and qualitative data collection supported participant decision making during the consent process (Bampton & Cowton, 2002), where participants learned that the survey would take approximately 10-15 minutes to complete, and the interview would take approximately 30-minutes to complete. Providing participants with a schedule of time obligations prior to engaging in the research is known to build trust and rapport between the participant and the researcher and reduces participant abandonment, respondent fatigue, frustration related to comprehending questions, and inequitable compensation (Benford &
Standen, 2011; Scott-Barrett et al, 2019). Thus, providing participants with two separate opportunities to participate in the research highlights the inclusive design and methodological integrity of the research because it increases accessibility, respects individualization, and supports autistic students’ autonomy in decision making. Methodology 78
Procedures for Data Analysis
The mixed-method convergent parallel design of the study meant that while quantitative and qualitative data were collected concurrently in a single phase, data sets from the survey responses and semi-structured interviews were analyzed separately and then integrated for final analysis. To maintain the centrality of autistic student voice in my interpretations of their school experiences, qualitative sub-themes were not transformed into quantitative categories to facilitate the integration of mixed-method data collection. This decision helped to protect the authenticity of student voice and ensured that the quantitative component of this mixed-method study did not dominate (Charmaz, 2012).
Integration of Quantitative Data and Qualitative Data
The integration of quantitative and qualitative data is beneficial because it generates new insights that may not be discoverable in separate presentations of data, and it is a way to illuminate unique findings (Bazeley, 2009). For example, the survey question related to participants’ preferred mode of communication was interesting because more than half (56%) of autistic students shared that they preferred to use non-speaking modes of communication.
Subsequently, this learning prompted me to explore the phenomenon more deeply in the semi- structured interview, resulting in a more profound understanding and awareness of why and under what conditions autistic students prefer to use non-speaking modes of communication.
Which notably may not have occurred if I only used one single data source to gather student perception data. Thus, the integration of quantitative and qualitative data occurred in two stages.
The first stage of data integration occurred through methods, where survey questions informed the semi-structured email interview questions, and the second stage of data integration occurred during interpretation and reporting, where QUAN and QUAL data sets were merged using a joint Methodology 79 display technique called the Pillar Integration Process (PIP). Figure 1 provides a summary of the two phases of data integration.
Figure 1 Summary of Two Phases of Data Integration
Quantitative data analysis using descriptive statistics
Phase 1 Data Phase 2 Data Integration: Integration: Survey questions QUAN and QUAL informed interview findings merged using questions PIP, a joint display technique. Qualitative data analysis using inductive thematic analysis
Pillar Integration Process (PIP)
The Pillar Integration Process (PIP) is a four-stage analytical technique to integrate mixed- method data (Johnson et al., 2019). The PIP was developed to address a gap between researchers’ theoretical understanding of data integration and the practical how-to-steps of achieving data integration (Fetters & Freshwater, 2015; Johnson et al., 2019). The four-stages of
PIP are listing, matching, checking and pillar building, which are completed after initial quantitative and qualitative analysis. Figure 2 is a slightly adapted illustration of Johnson et al.’s
(2019, p.305) figure of the four-stages of data integration using PIP.
Methodology 80
Figure 2 Illustration of Data Integration Using the Pillar Integration Process (PIP)
QUAL QUAN QUAN Pillar QUAL Sub- Data Categories Building Quotes Themes Themes
1.Listing 2. Matching 3.Checking 1.Listing 2. Matching 3. Checking
Each stage used to integrate QUAN and QUAL data using PIP is described below:
1. Listing: After initial descriptive statistical analysis of survey data (QUAN) and thematic
analysis of interview data (QUAL), raw data (e.g. percentages and selected quotes) were
listed in the QUAN Data and QUAL Quotes columns. Next, QUAN categories and
QUAL sub-themes identified from initial analysis were entered in the corresponding
columns.
2. Matching: Once relevant data were listed in the QUAN and QUAL columns, entries
between QUAN and QUAL columns were matched horizontally to align similar data.
This procedure of matching similar data worked to refine and organize categories
between the two data sets to identify “patterns, parallels, similarities, or any other
relational quality” (Johnson et al., 2019, p.305). When no match was found, then the
heading “not identified” was used to visually represent gaps in match data.
3. Checking: In this stage of data integration, matched data is checked for quality and
accuracy. Any identified gaps were verified to improve the quality of data integration. Methodology 81
This stage was of particular importance because it served as an additional checkpoint to
pause and reflect on QUAN and QUAL data both separately and in relation to each other
to identify emerging patterns.
4. Pillar Building: Findings identified from the listing, matching, and checking stages were
compared to build the pillar of integrated findings from QUAN and QUAL data
collection. Each of the integrated themes listed in the pillar is constructed from each row
of matched findings in the QUAN and QUAL columns. The findings in the pillar
represent the weaved together viewpoints of students and are used to build a narrative of
students’ school experiences.
The benefit of using PIP is that it synthesizes different data sources using a multi-stage technique. Consequently, allowing researchers to convey each step of the data integration process, thus promotes transparency and replicability. Additionally, the PIP enables researchers to identify instances of divergence, which are also beneficial in generating new insights on the phenomenon being investigated (Johnson et al., 2019).
Ethical Considerations
Informed Consent and Assent
To date, few studies examine effective methods to obtain consent from individuals with communication difficulties (Loyd, 2013; Jordan & Preece, 2010) or developmental disabilities, including autistic youth (Harrington et al., 2014). However, the research gap does not mean that autistic individuals cannot give informed consent and assent (Loyd, 2013), but rather the strategies to engage autistic and other hard to reach populations are limited. This reported limitation calls for researchers to make intentional efforts to provide meaningful and alternative Methodology 82 options (Scott-Barrett et al., 2019; Loyd, 2013), including an ongoing process of assent (British
Psychological Society, 2014).
According to the new Tri-Council Policy Statement: Ethical Conduct for Research
Involving Humans (TCPS 2, 2018), participants between the ages of 14-17 years old may qualify as mature minors and they should be provided with the adult/participant consent form, if they possess decision-making capacity. Following this TCPS consideration, and in alignment with recommendations from researchers familiar with eliciting the views of autistic students, in my study, autistic participants were viewed from a strength-based lens with presumed competence
(Scott-Barrett et al., 2019). Participants that met the study’s eligibility criteria, were considered to possess decision-making capacity to provide consent, therefore parental consent was not required in my study.
Participants were invited to download a printable information booklet that introduced the researcher, described the research, eligibility, participation requirements, and risks and benefits of participating in the research. The booklet was carefully formatted to convey study information in a simple, concrete manner, paired with visual supports (Harrington et al., 2014; Loyd, 2013).
If parents were interested in learning about the study, a short parent document was also available for download. Once a participant read the research information booklet, they returned to the online survey to mark their consent. If they consented, the survey started, and if they did not consent, the survey closed. Ascent was checked at regular intervals (Loyd, 2013), including at the beginning of the survey and throughout the email interview.
Risk
There were no known risks for participating in this study. Students were not observed in their educational setting; therefore, the study was not obtrusive or changed school behaviours Methodology 83
(Zeni, 1998). Students were able to respond to the questions in their own space, in their own time, and with supports if required. If a participant decided to participate in the semi-structured email interview, they might have felt tired, which they could take breaks or end the interview at any time. If participants felt tired or stressed during or after participating in the research, they were encouraged to contact the Crisis Text Line; however, there were no known occurrences of stress or crisis.
Confidentiality and Anonymity
There was no intentional collection of data related to names, date of birth, and address.
Some participants may have signed their names at the end of email correspondence; however, this information was subsequently removed from email transcripts following the interview.
Survey data is untraceable to participants, and both quantitative and qualitative data is stored on secure, password-protected servers for five years.
Researcher-Participant Relationship
There was no known relationship between the researcher and participants. No recruitment activities were completed in connection to my involvement with various school boards.
Interaction with participants was initiated by the participant and occurred via email to schedule and complete the email interview.
Ownership of Data
All data will be kept for five years following the results’ initial publication and then will be destroyed. Any future use of this research data is required to undergo review by a Research
Ethics Board. A summary of the research was provided to one participant, one autistic self- advocacy group, one community agency, and two school superintendents, in response to their individual requests. Methodology 84
Validity, Reliability, Trustworthiness, Treatment and Integrity
Validity and Reliability
The validity and reliability of data are grounded in a study’s methodological design and the tools and processes used to collect data (Abowitz & Toole, 2010; Leung, 2015). Since this study sought first-person perspectives, it was important that participants independently chose to participate in the research and that flexible options to enable authentic participation were available to students throughout the study. Therefore, removing barriers for autistic students to access and participate in the research by offering synchronous and asynchronous involvement strengthened the validity and reliability of quantitative and qualitative data collected.
Additionally, the mixed-method convergent parallel design of the study meant that data could be viewed from quantitative and qualitative perspectives (Leung, 2015). Subsequently, different tools, including the asynchronous online survey and the synchronous email interview, helped to confirm the data’s validity and reliability. As previously described in the section titled: Data
Collection, items from the Panorama Survey (Gehlbach, 2014) were used to develop the online survey and informed the semi-structured email questions. The Panorama Survey (Gehlbach,
2014) is proven to have strong structural validity and reliability (Geiger & Amerin-Beardsley,
2019), and upon completing Chronbach’s Alpha, the test scales have strong internal consistency
(a=0.825). Therefore, the Panorama Survey’s (Gehlbach, 2014) customizable features also contributed to the validity and reliability of student perception data collected.
The validity of qualitative data is demonstrated by the semi-structured interview questions’ suitability to explore the phenomena while respecting preferences for non-speaking communication, cultural, and gender identities. Additionally, the composition of semi-structured email questions was considered in the context of the previous research on autistic students’ Methodology 85 school experiences and research on ethical methods to engage autistic children, youth, and adults in research. Lastly, the reliability and validity of quantitative and qualitative data sets were tested by triangulating data (Abowitz & Toole, 2010) using the PIP process.
A well-documented audit trail to support the validity and reliability of data includes:
a) Recruitment logs, including contacts, responses, and timelines.
b) Email transcripts tracking correspondence with participants to schedule interviews, semi-
structured interview questions used, participant responses, and time/date stamps.
c) Qualtrics generated reports on survey data.
d) Excel spreadsheets of mean and standard deviations of survey data; and
e) Line by line coding of email transcripts.
Trustworthiness
The trustworthiness of quantitative and qualitative data was achieved through the following four domains:
1. Credibility is the extent to which the source of the data accurately represents what the data
is supposed to represent (Aroh, 2014). The credibility of quantitative and qualitative data
was achieved through triangulation between the survey data, open-ended survey data,
interview data, and previous research on the self-reported school experiences of autistic
students.
2. Transferability is how well the data would apply to other instances (Guba & Lincoln,
1985) and was achieved by comparing integrated findings with previous research on the
self-reported school experiences of autistic students. Methodology 86
3. Confirmability is the extent in which data is free from researcher bias (Guba & Lincoln,
1985) and was achieved by providing an audit trail of data collection, analysis and
interpretation of the data, methodological selection, data analysis, and interpretation; and
4. Dependability is how likely the data can be replicated in another study (Denscombe,
2010) and is supported by providing a clearly defined audit trail, or map, of the decision-
making process and procedures used from the initial conceptualization of the research,
data analysis, and discussion (see Appendix B: Research Pathway).
The degree in which the research inspired personal and social change, also known as catalytic validity (Lather, 1986), was done through researcher reflexivity, researcher actions to meet the unique needs of autistic participants, and insights presented to educators and policymakers in the
Discussion, Recommendations, and Conclusions chapter.
Treatment and Integrity
Through a critical disability theoretical framework and a phenomenologically informed research lens, this research aimed to increase the visibility and recognition of autistic voice while resisting objectification through Othering (Ahmed, 2002; Krumer-Nevo & Sidi, 2012). There are several actions I took to support my efforts, including researcher reflexivity and memo-writing.
For example, there was a moment while conducting an email interview where I found myself questioning the appropriateness of time between asking and receiving student responses to my questions. My impatience led me to wonder about technology issues, distractions, but mostly participant ability. However, by writing down and reflecting on my thoughts, I realized that it was easier and perhaps more commonplace, for me to direct my feelings of tension towards the autistic student than it was to re-evaluate my views and assumptions on legitimate knowledge production in relation to the concept of time. Other ways I sought to improve the ethical integrity Methodology 87 of this study was by offering an online platform to collect student perception data, which was beneficial because it acknowledged and supported the unique and individual thinking, sensory, social, and communicative preferences of autistic participants. Additionally, virtual engagement with participants helped minimize power differentials and implicit expectations to follow
“socially acceptable” behaviours and interactions. Lastly, by using unaltered student quotations to support my interpretation of students’ school experiences, the research spotlight remained centred on the voice and views of autistic students (Krumer-Nevo & Sidi, 2012).
Chapter Summary
This chapter began by connecting my ontological and epistemological researcher position with my rationale for using a critical disability theory framework and a phenomenological informed research lens to learn about autistic students’ school experiences. The remainder of the chapter described the research design including a justification for using a mixed-method convergent parallel research design within a critical disability theory framework; a description of the research setting, sample, and data sources; data collection methods and instruments; ethical considerations; validity, trustworthiness, treatment, and integrity; and limitations and delimitations of the study. Analysis and Findings 88
Chapter 4: Analysis and Findings
This chapter presents the sequential comparative analysis of quantitative data from the online survey (n=72) and qualitative data from the open-ended survey question (n=19), and semi-structured email interview (n=10). Sequential comparative analysis is an effective approach to combine quantitative and qualitative data in mixed-method research to explore relationships between different data sets (Kane et al., 2014). The first stage of analysis occurred when quantitative data were analyzed using descriptive statistics and qualitative data were analyzed using inductive thematic analysis. Lastly, to provide a synthesis of research findings, quantitative and qualitative data sets were merged using a joint display technique called the Pillar Integration
Process (PIP).
Summary of Study Findings
Based on the self-reports of autistic high school students, this study identified the following five main findings:
1. Teacher Characteristics: Teachers who are respectful, understanding, caring, friendly,
fun, real and relatable, and passionate about teaching help to create a sense of belonging
for autistic students.
2. Pedagogical Practices: Autistic students value teachers who personalize learning by using
flexible pedagogical practices and appreciate when teachers check-in to ensure they
understand the material.
3. School Environment: Autistic students seek personalized school spaces to accommodate
their unique sensory preferences and to help reduce their feelings of stress and anxiety.
4. Peer Relationships: Autistic students desire peer recognition, acceptance, and support. Analysis and Findings 89
5. Modes of Communication: Autistic students use different modes of speaking and non-
speaking communication as a strategy to improve the clarity of their messages and to
minimize feelings of stress and anxiety.
Quantitative Data Analysis
Descriptive statistics is the statistical description of the properties of a data set. Typical reports include the mean, median, mode, variance, and standard deviation (Creswell, 2014).
Focusing on two analytical components of descriptive statistics, specifically mean and standard deviation of students’ survey responses, was suitable because this study did not seek to test a hypothesis or compare within-subject experiences. However, future consideration of completing a statistical analysis of variance would be worthwhile to investigate the relationship between students’ responses in particular survey items. Calculating the mean of student responses was advantageous because it supported the four-phases of data integration outlined by PIP. Thus, the quantitative analysis results were transferred into the QUAN Data pillar in Table 7, titled
Integration of Quantitative Data and Qualitative Data Using the Pillar Integration Process, which follows the presentation of qualitative data in this chapter.
The survey items were Likert-type scales (Sullivan & Artino, 2013), where participants chose a response from a four-point Likert scale or a five-point Likert scale, with an option of “I prefer not to answer” included on each item. There were 14 survey items that provided four-point
Likert scale options and four survey items that provided five-point Likert scale options. Table 4 summarizes the mean and standard deviation (SD) for the 14 survey items with four-point Likert- scales, and Table 5 summarizes the mean and SD for the four survey items with five-point Likert scales. A synthesis of survey responses follows Table 4 and Table 5. Analysis and Findings 90
Table 4 Mean and SD of Survey Responses with Four-Point Likert Scale
Almost Often Once Almost Prefer M SD N Survey Questions Always in a Never not to While Answer How often do you receive feedback at 15% 46% 28% 10% 1% 2.64 0.87 72 school? How interesting is school? 29% 36% 27% 7% 1% 2.82 0.97 72 How excited are you to go to school? 27% 24% 24% 25% 0% 2.52 1.14 71 How eager are you to participate in your 24% 18% 34% 23% 1% 2.41 1.13 71 classes? How often do your teachers take the time to 19% 40% 26% 14% 1% 2.60 1 70 ensure you understand the material? How much do your teachers encourage you to 34% 43% 20% 2% 0% 3.13 0.78 70 do your best? Overall, how high are your teachers’ 26% 47% 19% 7% 1% 2.89 0.93 70 expectations of you? How many of your teachers are respectful 39% 43% 15% 3% 1% 3.14 0.87 70 towards you? How many of your teachers would you be 19% 37% 33% 11% 0% 2.63 0.92 70 excited to see again in the future? Overall, how much do you feel like you 29% 31% 21% 19% 0 2.70 1.08 70 belong at your school? How well do peers at your school understand 20% 29% 30% 21% 0% 2.47 1.05 70 you as a person? How much respect do your peers in your 24% 41% 26% 7% 1% 2.80 0.94 70 school show you? How often do you worry about bullying at 13% 20% 41% 24% 1% 2.19 1 70 school? How often do you worry about online 9% 17% 45% 26% 3% 70 bullying? 2.03 0.95
Table 5 Mean and SD of Survey Responses with Five-Point Likert Scale
Prefer M SD N Survey Question Extremely Quite Somewhat Slightly Not Not to Answer How comfortable are you asking questions about what 19% 24% 28% 17% 11% 1% 4.1 2.7 72 you are learning? How fair or unfair are the rules at school? 26% 31% 22% 13% 8% 0% 4.60 2.78 72 How pleasant or unpleasant is the physical space at your 31% 28% 14% 16% 11% 0% 4.76 2.99 71 school? How positive or negative is the energy at school? 31% 27% 14% 23% 4% 1% 4.92 2.97 71
Analysis and Findings 91
Synthesis of Students’ Survey Responses
To provide a synthesis of students’ survey responses, survey items measuring similar themes were organized into one of three main categories. Each category’s composition reflects the survey scales that each survey item belonged to in Panorama Survey (Gehlbach, 2014). For example, the survey item “How often do you receive feedback at school?” was selected from the survey scale titled Pedagogical Effectiveness. The three main categories used to present a synthesis of students’ responses on the 18 survey items are:
1. Pedagogical Effectiveness, Rigorous Expectations and Student-Teacher Relationships
2. Valuing School and School Engagement
3. School Belonging, School Safety and School Climate
Pedagogical Effectiveness, Rigorous Expectations and Student-Teacher Relationships
Slightly more than half of the students indicated that their teachers provide feedback
(61%) and take the time to ensure they understand the material (59%) almost always and often.
Less than half of students (43%) reported feeling extremely and quite comfortable asking questions. Contrastingly, nearly three-quarters of students reported that their teachers had high expectations (73%) and encouraged (77%) them to do their best almost always and often. While most students (82%) felt respected by their teachers almost always and often and very few students (3%) felt disrespected by their teachers and slightly more than half of the students
(56%) reported that they would be excited to see their teachers in the future. Overall, most autistic students reported feeling respected by their teachers and that their teachers were encouraging and had high expectations of them. However, slightly more than half of the students also reported that their teachers did not provide enough feedback and did not feel comfortable asking questions. Analysis and Findings 92
Valuing School and School Engagement
While students were equally divided in their excitement to attend school (Almost
Always=27%, Often=24%, Once in a While=24%, Never=25%), nearly two-thirds of students
(65%) reported that their school experiences were interesting almost always and often. Less than half of students (42%) reported feeling eager to participate in class almost always and often, while nearly a quarter of students (23%) reported almost never feeling comfortable participating in class. Survey data on students feeling eager to participate in class (42%) is similar to survey data on students feeling comfortable asking questions (43%) in class, where approximately four in ten students felt comfortable. Overall, half of autistic students were excited to go to school, two-thirds of students found school interesting and nearly a quarter of students do not feel comfortable participating and asking questions in class.
School Belonging, School Safety and School Climate
Slightly over half of students (60%) reported that they almost always and often felt like they belonged at school, and 19% of students almost never felt like they belonged at school.
Slightly over half (57%) of students felt the school rules were extremely and quite fair, and 8% of students felt that the school rules were not fair. While 65% of students reported feeling respected by their peers almost always and often, slightly less than half (49%) of students felt that their peers understood them as a person almost always and often. Nearly a quarter (21%) of students reported that their peers almost never understood them as a person. One-third of students indicated that they worried about in-school bullying (33%) almost always and often, and slightly over a quarter of students worried about online bullying (26%) almost always and often.
Most students reported worrying about in school (41%) and online (45%) bullying once in a Analysis and Findings 93 while, and nearly a quarter of students reported almost never worrying about in school (24%) or online (26%) bullying.
Fifty-nine percent of students reported that their school spaces were extremely and quite pleasant, and almost the same number of students (58%) felt similarly about their school’s energy. Contrastingly, 11% of students felt that their school spaces were not pleasant, and 4% felt that the school energy was not positive. Overall, slightly more than half of the students felt a sense of school belonging and respected by their peers. However, less than half autistic students felt that their peers understood them as a person. Nearly three-quarters of students worried about school or online bullying and slightly more than half of students were pleased with their school environment.
Qualitative Data Analysis
Qualitative data were analyzed using inductive thematic analysis. Inductive thematic analysis offers a set of techniques to analyze texts and explain main or frequent ideas, topics or themes within a collection of data. Inductive thematic analysis was an appropriate analytical tool to use because it avoided a priori theory and generated themes from the “bottom-up” opposed to the “top-down” (Braun & Clarke, 2006, p.12). This meant that qualitative themes remained strongly connected to students’ self-reports and were less influenced by my researcher assumptions and interest in the phenomenon (Braun & Clarke, 2006). Additionally, my interpretation of autistic students’ school experiences was not compared to “typical” students’ experiences. Which is a problematic research practice because it perpetuates us-them type thinking (Krumer-Nevo & Sidi, 2012) and reinforces educator views that equate difference with deficit and rationalizes oppressive school practices such as labelling autistic students as “special education” students. Analysis and Findings 94
Qualitative data from the open-ended survey responses (n=19) and the semi-structured email interview (n=10) were analyzed together by following six stages: 1) Familiarizing myself with data, 2) Generating initial codes, 3) Searching for themes, 4) Reviewing themes, 5) Naming themes, and 6) Writing themes (Braun & Clarke, 2006). To familiarize myself with the qualitative data, I read open-ended survey responses and email transcripts several times and noted my thoughts and questions in a separate document or directly on the survey responses and email transcripts. This metacognitive process was beneficial because it allowed me to reference and reflect on my researcher assumptions and ableist biases, including the concept of time and quantity of words in participants’ typed responses. In a word document, I combined the open- ended survey responses with the email transcripts and added two columns to the right of the transcripts. The first column is where I generated initial codes from line-by-line analysis, and the second column is where I recorded names of sub-themes based upon line-by-line analysis. Table
6 provides a sample of the process of inductive thematic analysis I used to analyze qualitative data.
Analysis and Findings 95
Table 6 Sample of Inductive Thematic Analysis
Interview Data Line-by-line Sub-Theme
Ok, thanks for the clarification. The reason why I selected “other” was Draw to communicate, ask modes of because for me personally I use a mix of all the above mentioned and I questions, seek teacher communication also communicate through art, specifically drawing out my questions or attention answers. Hope this clarifies my selection of choice. Flexible communication methods
During lunch we would mainly talk random stuff going on in each others Social connection during peer lifes and tell jokes to each other but we would also hang out on sundays unstructured school time relationships due to it being the only day we all weren't busy were we would play Humour, hang out with peer support videogames, card/ board games, and dungeons and dragons. And I am friends on weekends to play happy to say that we still hang out every Sunday to do the activities games mentioned above. Routine gatherings with friends outside of school
I think a good characteristic in a teacher would be that they seem really Interested about subject friendly, kind, interested in the subject they are teaching as well as being openly matter sense of friendly and have a sense of humor. In grad 12 biology I had a great Friendly, sense of humour humour, teacher who would always be enthusiastic and tell stories from previous Enthusiastic, tell stories passionate about years and from his earlier life as well as being very kind and funny. kind, funny teaching/subject, relatable
School spaces were usually not a problem for me but I tended to avoid Noisy, crowded -sensory the cafeteria because it was noisy and there were a large amount of Friends lockers, quiet -personal spaces students. For places I would like to go to were mainly my friends lockers hallways were we would hang out in the more quiet hallway.
Thus, based on inductive thematic analysis of the 19 open-ended survey responses and ten semi-structured interviews, 23 sub-themes were identified as relevant to autistic high school students’ school experiences. The presentation of sub-themes is grouped based on their relatedness to each other. For example, sub-themes related to sensory experiences, are grouped together, and sub-themes relating to experiences with peers are grouped together. The 23 sub- themes are:
a) Experiences with Teachers (13 sub-themes): Understanding, caring, friendly,
accepting, respectful, honest, patient, sense of humour, passionate about subject
matter, relatable, flexible, checks-in, personalizes learning
b) Experiences with Peers (3 sub-themes): acceptance, support, recognition Analysis and Findings 96
c) Sensory Experiences (3 sub-themes): personal spaces (quiet, small, open), social
impact, stress and anxiety
d) Communication Experiences (4 sub-themes): modes of communication, time to
think, accuracy of messages, minimize stress and anxiety
Each of the sub-themes and supporting student quotations were transferred into the QUAL
Quotes and QUAL Sub-Themes pillar in Table 7, titled Integration of Quantitative Data and
Qualitative Data Using the Pillar Integration Process, which follows the interpretation of qualitative sub-themes in this chapter. The 23 sub-themes were identified as either positively or negatively impacting autistic students’ school experiences.
Qualitative Sub-Themes
Experiences with Teachers
The 13 sub-themes that emerged from autistic students’ experiences with teachers highlight that autistic students value teachers who are understanding, caring, friendly, accepting of their differences, patient, respectful, relatable, honest, have a sense of humour and are passionate about teaching. It’s important to note that quotations have not been edited and are presented as initially typed by students during the email interview. The following quotes illustrate autistic students’ views on their experiences with teachers:
“I really appreciated understanding, caring and friendly characteristics. In addition, I felt
welcomed being trusted by teachers.” (Zia)
“They are Respectful of you and value you as a person even though you have limitations.
They are Honest and don't tell “white lies” because they care more about your feelings
than the future consequences or your understanding.” (Charlie) Analysis and Findings 97
“The ones that stand out to me are the ones who would loudly praise or compliment me for
doing well on some assignment, were patient with me when I would ask them to explain
some concept I had trouble understanding, and would greet me with a smile if I happened
to pass by them in the hallway.” (Alex)
“I dont really like to ask questions in class, but would ask after the class was over to go
over somethings I wasn't good at or clear on. The best teachers I had didn't feel like I was
bothering or annoying them”. (Frankie)
“he would always be enthusiastic and tell stories from previous years and from his earlier
life as well as being very kind and funny...and do a magic trick every Friday. he simply
made all the students in the class in love with his course. he used to talk to the
students about other stuff besides the lesson like he is one of our friends.” (Azariah)
From the sampling of student quotations, we learn how precisely autistic students pinpoint the actions teachers take that either support or hinder the development of positive relationships, ultimately leading to students’ overall sense of school belonging. The recalling of personally memorable moments with teachers, where autistic students are made to feel accepted and respected, emphasizes the central role teachers play in creating inclusive school environments outside the pragmatics of teaching and learning.
Experiences with Peers
Peer recognition, peer acceptance, and peer support were three areas identified by autistic students as important to their school experiences. Of the four email participants who shared examples relating to in-school friendships, two reported positive experiences. One student shared friendships were difficult, and the fourth student seemed indifferent towards connecting with peers outside of his regular friend group. For example, Azariah stated that he liked to spend his Analysis and Findings 98 lunchtime watching football with his friends, and Taylor shared that “it was difficult to build and maintain friendships” due to his “less than stellar social skills”. Frankie shared that he neither felt respected nor disrespected by peers outside of his friend group, but this was due to his “shy and quiet nature”. The following quotations provide additional insights into autistic students’ views on their experiences with peers:
“A student I wasn't very familiar with approached me and said, “Wow, I had no idea you
were so smart.” I appreciated them saying that to me, though maybe they had a negative
first impression? (Sam)
“Someone who doesn’t treat you differently but understands your weaknesses” (Zia)
“During lunch we would mainly talk random stuff going on in each others lifes and tell
jokes to each other but we would also hang out on sundays due to it being the only day we
all weren't busy were we would play videogames, card/ board games, and dungeons and
dragons. And I am happy to say that we still hang out every Sunday to do the activities
mentioned above” (Armani)
“One of the other kids in that group was teasing me about my shirt. I dont like to be teased
(who does). But the nice girl stepped in and told the other girl to stop it, and that I looked
nice. I've had more respect for her since then.” (Kai)
Autistic students also conveyed that they appreciated peers who recognized the similarities between them, rather than disparities or differences. However, autistic students acknowledged that when “weaknesses” were evident, they valued peers who accepted their vulnerabilities without stigmatizing their differences. Additionally, autistic students shared that they appreciated receiving peer support in instances of teasing and that they felt more respect for peers after receiving peer assistance and validation. Analysis and Findings 99
Sensory Experiences
Autistic students consistently made connections between school spaces and their feelings of stress, anxiety, and overall sense of school belonging. These qualitative findings are similar to quantitative survey results that indicate slightly over half of the participants feel that their school spaces (59%) and school energy (58%) are pleasant almost always and often. While most students shared similar views on school spaces, they liked and disliked; two students held opposing opinions about dark spaces. However, the disparity seemed to be predicated on the intended use of the space. For example, one student liked the calming effect of dark spaces while the other student did not like to talk to peers in dark and secluded spaces because it made him feel “weird” and “awkward”. Charlie provided a detailed explanation of how school spaces significantly impacted her sense of safety and wellbeing:
I avoid as much as I can
1) open spaces or busy spaces because there is so much going on that I can't focus on
anything. I get anxious that someone will come up and talk to me or ask me for something
and I won't notice them (I wear earplugs much of the time that many people either don't
notice or assume are music/hearing aids or something), and there are usually a ton of
sounds and smells and textures and colours.
2) Rooms with florescent lights. They buzz and flicker and are usually too bright. Need I
say more?
3) Places people are eating. Cafeterias, public spaces around mealtimes. Many people
chew with their mouths open or eat messily or talk with food in their mouths and no matter
how much I like those people the sensory experience of being near that is very off-putting.
This doesn't just apply at school- I've had this problem with my own family at the dinner Analysis and Findings 100
table too. I used to leave because it was too much and then maybe not eat but now I just eat
separately from them.
4) Crowded spaces where I will be forced to enter other people's personal space or they
enter mine. Never mind that in high school, some people think that perfume/cologne = a
showered clean body smell. No. Now you have two bad smells.
I enjoy/ spend time in
1) Libraries, as they are usually uncrowded, quiet (full bookshelves are great sound
absorbers) and slow-paced. People typically mind their own business and are often banned
from eating or drinking or talking too loud. It's fantastic!
2) Bathroom stalls. They aren't too great- typically fluorescent lights and bad smells/sights
but the good part is you can lock yourself in and no one will bother you if you need a
break. I used to lock myself in and break down when I was having a hard time and then
pull myself together and go back to being Totally Fine. It helps avoid a lot of the stigma
associated with crying or having sensory overload at school because if no one knows, you
don't need to explain yourself.
3) Any place that can be made dark, quiet, and private. Sometimes this was a teacher's
office, a storage closet, or when I was younger, at recess, a tree or bush. Even though a
tree isn't always dark or quiet, leaves (especially in wind) make a very soothing noise, and
no one sees you when you're so far above eye level.
Three students shared that the organization of classroom desks also affected their feelings of anxiety and comfort when interacting with peers. For example, Lennon shared “I prefer a classroom with symmetry and desks all facing the same way. classrooms with desks in random Analysis and Findings 101 or weird orientations would distract me or make me anxious”. Alex also expressed that he felt anxious if desks were positioned to face each other:
It’s the kind where desks are positioned and connected in a way so that each person is face
to face with each other. Like a group of 3-4 desks connected to each other to form a group
of students I had that in some of my classes, and I disliked it very much. I felt very anxious
and awkward facing the person in front of me, and would always try to avoid eye contact
as much as I could with them. I much prefer the common desk layout where its just
individual desks organized in rows.
Frankie typed out a seating chart to show me where she preferred to sit in a classroom:
I prefer to sit on the edge, and in the 2nd to last row, and preferably close to the door.
For example:
FRONT OF THE ROOM
x x x x x x x x x x
x x x x x x x x x x
x x x x x x x x x A
x x x x x x x x x x DOOR
I try to sit where “A” is
Frankie's preferred location, “A”, could be interpreted as ideal for several reasons. First, sitting at the end of a row minimizes closeness with other students, hence reduces sensory input and expectations for social interactions. Second, support from teachers could occur promptly with little notice from peers. Third, if Frankie felt she needed to leave the classroom, she could exit discretely, thus minimizing peers’ unwanted attention. Analysis and Findings 102
It is undeniable that school and classroom spaces have an extensive impact on autistic students’ feelings of physical and psychological safety and learning ability. When autistic students are continually expected to navigate oppressive learning environments, they have fewer cognitive resources available to learn new concepts, express their learning, and connect with teachers and peers.
Communication Experiences
Autistic students’ reports on their school experiences related to their preferred mode of communication were incredibly exciting and thought-provoking. I am effectively confirming this study’s strong catalytic validity, where both personal and institutional change is spurred.
Admittedly, even as an experienced educator, I was unaware of the number of autistic students who preferred to use non-speaking modes of communication. Furthermore, I was not in-tune with the internal and external circumstances that guided students’ choices on their selection of non-speaking methods of communication, including typing and drawing. Consequently, I have begun to weave this new knowledge into my leadership conversations and the processes and systems I create to support teachers and autistic students. Very little research has been conducted on the use of multi-modal communication by autistic students in inclusive settings, thus partially explaining the lack of educational discourse that considers effective pedagogical practices to support non-speaking representations of knowledge.
Interestingly, several autistic students shared that they preferred to use various non- speaking modes because the method provided additional time to think, improved the accuracy of messages, and minimized feelings of stress and anxiety. The following quotes highlight autistic students’ preferences for using non-speaking modes of communication: Analysis and Findings 103
“If I were to have a question I'm not sure how to answer or word I would just draw it out.
As for questions I use my drawing to gather the attention of my teachers when they pass by
my desk and see if I made progress and see a giant convaluted cartoon which basically us
requesting help because I get anxious putting up my hand and asking loudly my question.”
(Lennon)
“No, I do not use an assistive communication device. I put typing as my preferred method
of communication because I often have trouble coming up with words on the spot when I
am talking in person. Like I am always stumbling over my words or stuttering. When I type,
I can edit and review what I have to say until it is something that I feel is satisfactory.”
(Alex)
“I like to think about my answer first, and be able to type it out and change it if I want to.
In person or talking can be stressful sometimes if I don't know how to answer the question
or what I want to say.” (Frankie)
Similar to autistic students’ views on their experiences with teachers, peers, and school environments, autistic students share with great detail their rationale for using non-speaking modes of communication, including typing and drawing. This reflective awareness reveals a deep understanding of autistic self and autistic self in relation to others. This attentiveness highlights the desire and the commitment of autistic students to conform to the rules that govern schools to feel accepted and have a sense of belonging.
Integration of Quantitative Data and Qualitative Data
After completing the initial quantitative and qualitative data analysis, quantitative categories and qualitative sub-themes are merged using the Pillars of Integration Process (PIP), which uses a four-stage integration process (Johnson et al., 2019). The four-stages of data Analysis and Findings 104 integration include listing, matching, checking, and pillar building. The PIP is beneficial because it provides a visual method to draw out insights beyond what is represented in separate quantitative and qualitative results (Fetters et al., 2013); and offers more in-depth explanations of the phenomena under study- in my case, the self-reported school experiences of autistic participants. Table 7 illustrates the PIP process used to integrate quantitative and qualitative data sets and highlights the five main study findings in the center column named Research Findings.
Table 7 Integration of Quantitative Data and Qualitative Data Using Pillar Integration Process
QUAN QUAN Research Findings QUAL QUAL Data Categories Sub-Themes Quotes
Online Survey (n=73) (Pillar Building Open-Ended Survey Themes from Question (n=19) integrated QUAN Email Interview(n=10) and QUAL data)
72% of students feel understanding, caring, “I really appreciated respected by their respected, encouraged, Teacher friendly, accepting, understanding, caring teachers. school belonging Characteristics respectful, honest, and friendly 77% of students feel patient, sense of characteristics. In teachers encouraged humor, passionate addition, I felt them to do their best. about subject matter, welcomed being 60% of students feel relatable trusted by teachers.” like they belonged at school.
61% of students feel teacher feedback, flexible, personalized “I dont really like to teachers provide teacher check-ins, Pedagogical adaptions, checks for ask questions in class, feedback. teacher expectations, Practices understanding but would ask after the 59% of students feel eager to participate, class was over to go teachers ensure they comfortable asking over somethings I understand the questions, excited to wasn't good at or clear material. go to school, school is on. The best teachers I 73% of students feel interesting, fairness of had didn't feel like I teachers had high school rules was bothering or expectations of them. annoying them.” 42% of students feel eager to participate in class. 43% of students feel comfortable asking questions in class. 51% of students feel excited to attend school. 65% of students feel school is interesting.
Analysis and Findings 105
57% of students feel the school rules are fair.
59% of students feel school spaces, school School sensory, personal “I usually avoid the that their school energy Environment spaces, anxiety, cafeteria. I prefer spaces are pleasant regulation quiet, closed-off 58% feel that the spaces. It is a very school energy is crowded and noisy positive. environment.”
65% of students feel peer respect, peer recognition, “someone who doesn't respected by their understanding, Peer acceptance, support treat you differently peers. bullying (in-school Relationships but understands your 49% of students feel and online) weaknesses.” peers understand them as a person. 33% of students worry about in-school bullying. 26% of students worry about online bullying.
43% of students speaking and non- Modes of modes of “I prefer to type preferred speaking speaking modes of communication, time because I find it easier communication. communication Communication to think, accuracy of to give thoughtful 51% of students messages, answers when I write preferred typing stress/anxiety them down. I have a communication. bit of social anxiety, 5% of students and it can be hard to preferred other modes think of quality of communication responses on the spot (art, drawing) over the phone or in- person”. 7/10 interview participants indicated they preferred non- speaking modes of communication.
56% of students feel Interested to see excited to see their teachers in the future not identified teachers in the future.
Study Findings
Based on the integration of quantitative categories and qualitative themes using PIP, this study identified five main findings being central to autistic students’ school experiences. The five main study findings are: Analysis and Findings 106
1. Teacher Characteristics: Teachers who are respectful, understanding, caring, friendly,
fun, real and relatable, and passionate about teaching help to create a sense of belonging
for autistic students.
2. Pedagogical Practices: Autistic students value teachers who personalize learning by using
flexible pedagogical practices. Students also appreciate when teachers check-in to ensure
they understand the learning material.
3. School Environment: Autistic students seek personalized school spaces to accommodate
their unique sensory preferences and to help reduce their feelings of stress and anxiety.
4. Peer Relationships: Autistic students desire peer recognition, acceptance, and support.
5. Modes of Communication: Autistic students use different modes of speaking and non-
speaking communication as a strategy to improve the clarity of their messages and to
minimize feelings of stress and anxiety.
It is noteworthy to mention that one quantitative finding was not identified as a qualitative finding, therefore could not be matched. Specifically, the survey item asking students how excited they would be to see their teacher in the future did not have any corresponding matches with qualitative data. Consequently, this outlying quantitative finding was not included in the main study findings because it was not considered a significant factor impacting autistic students’ school experiences. Data collected from this survey question found over half (56%) of students felt excited to see their teachers again in the future, which may be a comparable to most adolescents nearing the end of their school career. This survey item may be important to consider if a researcher was interested in exploring the relationships between survey items. For example, does a relationship exist between students’ desire to see their teachers again in the future and their current sense of school belonging? Analysis and Findings 107
Chapter Summary
This chapter presented a sequential comparative analysis of quantitative data from the online survey (n=72) and qualitative data from the open-ended survey question (n=19), and semi-structured email interview (n=10). Quantitative data were analyzed using descriptive statistics and qualitative data were analyzed using inductive thematic analysis. Quantitative and qualitative data were merged using a joint display technique called the Pillar Integration Process
(PIP). The following chapter will discuss each of the study findings in the context of inclusive education practice and policy to create provocations for systemic change.
Discussion, Conclusion, and Recommendations 108
Chapter 5: Discussion, Conclusion, and Recommendations
Through a critical disability lens, this chapter discusses each of the five study findings in relation to discussion points presented in the literature review and in contrast with studies published since the completion of data collection and data analysis. Following the discussion of findings, conclusions and recommendations for educators and policymakers are offered to encourage the transference of research into action. Lastly, the benefits of the study, ideas for future research, and researcher reflections are discussed.
Teacher Characteristics
Participant accounts of the positive impact “welcoming”, “understanding”, and
“respectful” teachers have on their sense of acceptance and belonging is supported by previous research that highlights connections between school context factors, including teacher qualities, and students’ sense of wellbeing in school (Noble & McGrath, 2014). Where student wellbeing is defined as a “sustainable state characterised by predominantly positive feelings and attitude, positive relationships at school, resilience, self-optimism and a high level of satisfaction with learning experiences” (Noble et al. 2008, p.9). Natural and spontaneous teacher actions, including greeting students and inquiring about personal interests, contribute to students’ sense of belonging and helps to improve negative experiences of students with special education needs, who report feeling eight times more excluded than their typical peers (Mitchell & Sutherland,
2020). The simple but significant impact teacher actions have on student wellbeing and belonging is confirmed by autistic students who share that smiling, happy, and friendly teachers make them feel more welcome (Williams, 2007). Initially discussed in the literature review, two meta-synthesis on the self-reported school experiences of autistic secondary students found that Discussion, Conclusion, and Recommendations 109 positive teacher qualities also improved student-teacher relationships, which ultimately increased positive domains of student wellbeing (Danker et al., 2016; Dillion et al., 2016).
Contrary to medical and social beliefs on the preferred social experiences of autistic students, having real and relatable teachers that are passionate about teaching are notably important to autistic students. Connecting with teachers personally is, like most students, an experience autistic students value and look forward to. For example, in Saggers et al.’s study, autistic high school students describe teachers who told jokes, performed a magic trick, or shared stories from being in the circus, as “super cool” (p. 178). Using humour and storytelling in the classroom is another naturalistic approach to teaching that engages and motivates students, lowers anxiety, and improves positive interactions between teachers and students (Tosta, 2001).
The benefits of teachers who are genuine and passionate about teaching is that it improves student-teacher relationships and enhances students’ overall interest and achievement in school
(Croswell & Elliot, 2004).
Autistic student views on the impact teacher characteristics have on their sense of school belonging are noteworthy because they challenge research that maintains that educators do not feel they have the adequate skills to foster inclusion (Loreman, 2014). Treating autistic students in caring, respectful, and personal ways does not require specialized training. However, these fundamental principles of good teaching continue to be overshadowed by historical theories on the presumed abilities, desires, and intelligence of speaking and non-speaking autistic people.
This is evident in the zeal many education systems have towards finding treatments and programs to help autistic students fit into “inclusive” settings, rather than systematically exploring ways schools can flex to be more inclusive. While evidence-based practices are necessary to support the unique strengths and needs of autistic students, overlooking the value of Discussion, Conclusion, and Recommendations 110 basic principles of humanity is unethical because it contributes to the exclusion and marginalization of autistic students and any other student who is considered non-ordinary. We educators must remind ourselves that the success of inclusive strategies is equally dependent on teacher attitudes and our ability to encourage student learning, as the type or quality of strategy used to support students (Mitchell & Sutherland, 2020).
Pedagogical Practices
In the age of personalized learning, also known as differentiation, teachers are expected to continuously adapt their pedagogical practices and modify curricula outcomes to their students’ abilities (Anastasiou et al., 2015). However, research shows that curricular adaptions and modifications are often confused and misused (Humphrey & Lewis, 2008; Lee et al., 2010). This confusion partly stems from similar verbiage and partly from a lack of understanding of how and when each is used. Curricular adaptations pertain to how students learn, and a curricular modification pertains to what students are learning (Alberta Education, 2004; Kurth & Keegan,
2014). Participants shared that it was important to them that teachers provide flexible opportunities for them to participate in class and to demonstrate their understanding of concepts.
The short and long-term benefits of consistently using personalized and flexible pedagogical practices are not original concepts for educators, nor are they uniquely helpful for autistic students. Plenty of research exists that highlights the beneficial outcomes of using personalized, strength-based approaches for all students (Hattie & Clarke, 2019). Universal Design for
Learning (UDL) is one such approach where educators are challenged to reframe traditional deficit-based thinking and teaching approaches instead of making learning accessible to students by removing barriers (Meyer et al., 2014). For example, by creating multiple entry points for students to access curricula and showcase their knowledge in personally meaningful and diverse Discussion, Conclusion, and Recommendations 111 ways. Previous research on the self-reported school experiences of autistic students confirms that personalized and flexible pedagogical practices are essential. However, the visibility of these practices and supports equally matter (Humphrey & Lewis, 2008; Saggers et al., 2011). While autistic students value personalized curricular adaptations and flexible pedagogical practices, they do not want accommodations and support to negatively accentuate their differences. This includes the provision of an education assistant, which is often viewed as the most responsive and effective type of support to give students special education needs. However, research supports that in general education classrooms interactions between autistic students and their teachers and peers are significantly reduced when an education assistant is present (Blatchford et al., 2009; Humphrey & Lewis, 2008; McVittie, 2005; Robertson et al., 2003). While autistic students in this study and previous research value strength-based teaching, it is interesting that of the 23 studies published since 2000 on the self-reported school experiences of autistic students, none concluded that autistic students desired more one-to-one support from an education assistant. This reflection is contrary to educator and parent beliefs on the provision of an education assistant is commonly believed to be the key to successful inclusion. Instead, successful inclusion indicators are more dynamic and complex and must consider strong policy, leadership, resources, teacher education, and accessible curriculum (Brown et al., 2020).;
Loreman, 2014).
Nearly two-thirds of students in this study reported feeling respected and encouraged by their teachers, which was an overall school experience strength identified by students. This finding is unique and has not been highlighted in previous research discussed in the literature or a recently published meta-synthesis by Williams et al. (2019). However, this discrepancy does not mean that autistic students in other studies feel disrespected or discouraged by their teachers. Discussion, Conclusion, and Recommendations 112
Instead, this finding’s uniqueness could be attributed to the mixed-method design of this study, where survey questions relating to teacher respect and encouragement were explicitly included in the study. This notion emphasizes that what we know about autistic students’ school experiences is influenced by research design and the tools we use to gather student perspectives. The limited number of research studies that use a mixed-method design is a limitation highlighted by Fayette and Bond (2018) in their literature review on research methods used to elicit the views of autistic people about their educational experiences; they found that none of the studies adopted a mixed- method approach. However, excluded in their review was Dillon et al. (2016) study that did use a mixed-method design to investigate the school experiences of autistic students in the UK.
School Environment
Students shared that school spaces significantly impact their school experiences in both positive and negative ways. School spaces affected students’ engagement in learning, interactions with peers and teachers, personal feelings of wellbeing, and overall sense of school belonging. Students tended to avoid noisy, crowded, and chaotic school spaces and consistently sought out school spaces that helped create feelings of safety, predictability, control, and ultimately personal success. Loud and busy school environments are known to overwhelm autistic students, often causing them to take alternate routes or avoid specific spaces altogether to minimize feelings of stress and anxiety (Humphrey & Lewis, 2008; Kopec, 2012; Saggers,
2015). The long-term adverse effects from repeated exposure to stressful and chaotic environments are highlighted in research that found approximately four in ten autistic students were “being prescribed medication for anxiety as a result of not being able to cope with the school environment” (Marshall & Goodall, 2015, p.3162). The tremendous impact school environments have on autistic students’ learning and wellbeing is supported by several research Discussion, Conclusion, and Recommendations 113 studies, including three separate meta-synthesis published by Danker et al. (2016), DePape and
Lindsay (2016), and Williams et al. (2019). However, compared to research on evidence-based practices to support autistic students in general education classrooms, research on design standards of classroom spaces is minimal (Martin, 2016). Commonly, classroom organization is dependent on teacher preferences and availability of school resources, which may inadvertently create oppressive and stressful learning environments (Khare & Mullick, 2009). This was evident in two student accounts where they dreaded attending specific classes because the seating arrangements were too close to peers, which caused them to feel “distracted”, “trapped”, and
“socially awkward”.
Forty percent of survey participants indicated that they did not feel a sense of school belonging, which is higher than results reported by the Organisation for Economic Co-operation and
Development (OECD), where 27% of students across 30 countries indicated that they felt a sense of school belonging (OECD, 2017). Part of this discrepancy might be attributed to the compound impact school environments have on autistic students’ feelings of wellbeing, safety, relationships with peers, and endurance to engage in learning in oppressive environments. As one student shared, “It’s very hard for us to integrate, i feel alienated most of the time”.
Exploring students’ feelings of alienation from a school environment perspective, including physical design, furniture layouts, and timetabling, are worthwhile considerations for researchers, policymakers, and educators. However, in some cases, bottom-up approaches are faster to implement and often more effective. Administrators and teachers can easily invite autistic and non-autistic students to have a voice at the table to co-create inclusive school spaces that support students’ psychosocial wellbeing and academic achievement in ways that do not stigmatize learner difference (McAllister & Maguire, 2012; Jones, 2015). Discussion, Conclusion, and Recommendations 114
Peer Relationships
Half of the survey participants shared that they did not feel understood by their peers and one-third of participants did not feel respected by their peers. Research shows that autistic students experience higher levels of social anxiety and rejection when they attempt to conceal their autism in an attempt to be viewed as “normal” (Humphrey & Lewis, 2008; Saggers, 2015).
Efforts made by autistic students to camouflage their autistic traits are a result of prolonged exposure to external messages from non-autistic people telling them that it is not normal to be autistic. The harmful effects have led to feelings of rejection, isolation, anxiety, and depression in autistic people (Ashburner et al., 2019; Mehling & Tasse, 2015; O’Hagan & Hebron, 2017;
Solomon et al., 2011). Like other adolescents their age, autistic students value peer recognition and acceptance through friendships and shared activities (Daniel & Billingsley, 2010; Deckers et al., 2017; Petrina et al., 2014). However, due to social-communication barriers and autistic mannerisms, autistic youth have fewer friendships inside and outside of school than their non- autistic peers (Taheri et al., 2016; Zeedyk et al., 2014).
As social rules and expectations become more sophisticated with age, autistic high school students also experience more difficulties forming and maintaining friendships (Rotheram-Fuller et al., 2010); which is troubling because having a few quality friendships improve resiliency towards life stresses and reduce feelings of depression and anxiety (Masten et al., 2009). Initially discussed in the literature review, some theorists defend that a weak theory of mind (TofM) partly explains why autistic students have fewer friendships than their non-autistic peers. TofM posits that autistic people lack or have a weakened ability to understand other people’s thoughts and feelings. However, aligning with critical disability theory that confronts ableist ontologies,
Milton (2012) defends that the issue is more accurately described as a double empathy problem. Discussion, Conclusion, and Recommendations 115
Understanding other people’s thoughts and feelings is a shared responsibility. Therefore, it is unjust to classify one group as having a disability when both groups have difficulty understanding the other. However, the disparity lies in the idea that autistic people need to conform to socially dominant rules to survive and thrive, where non-autistic people do not
(Milton, 2012).
In-School and Cyber Bullying
One-third of surveyed students shared that they worried about in-school bullying, and one- quarter of students worried about online bullying. Bullying is defined as repeated verbal and aggressive behaviour and intentional social exclusion intended to harm (Hwang, 2017).
Cyberbullying is also intended to cause harm through repeated and aggressive measures through electronic communication, such as texts, emails, photos, and videos, including name-calling, cyber-stalking, and humiliating others (Campbell et al., 2013). It is well known that both in- school and cyberbullying incidents are increasing, and autistic students experience more bullying than their peers with no or other special education needs (Symes & Humphrey, 2010). For instance, one study reported that autistic students with no cognitive impairments are four times more likely to get bullied than their typical peers (Little, 2002). In another study based on parent accounts, 65% of autistic children were victimized during the previous year (Carter, 2009).
Positive peer relationships increase autistic students’ sense of in-school safety and belonging (Humphrey & Lewis, 2008, Poon et al., 2014; Saggers, 2015) and are the most effective way to reduce the frequency of bullying (Humphrey & Symes, 2010). While this research found lower reports of bullying than what is found in other research, the discrepancy may be attributed to unexamined context factors such as the size of the school and student population, involvement with positive peer groups, teacher training, and jurisdictional Discussion, Conclusion, and Recommendations 116 commitments and policy on the prevention of bullying. Furthermore, similar to general research on the lived experiences of autistic people, autistic self-reports on their experiences related to in- school and cyberbullying are minimal, thus restricting knowledge researchers and educators have to make solid comparisons and to inform policy and effective practice.
Modes of Communication
Half of the surveyed students shared that they preferred to communicate by typing, and seven out of ten students who completed the email interview stated that they preferred to type to communicate. The primary reason students preferred to type to communicate was that it helped to minimize their feelings of stress and anxiety when communicating with teachers in front of classmates and peers in social situations. This explanation is not surprising when anxiety is the most common co-occurring condition in autistic youth, with the highest prevalence (4 in 10) being social phobia (Vasa et al., 2015). Having “unreliable speech” (Sparrow, 2017, para 3) is also known to cause stress and anxiety when speaking communication is expected. Unreliable speech is when what is said does not match the intended message, also known as intermittent speech (Sparrow, 2017). Intermittent speech should not be confused with selective mutism; where selective mutism follows a more socially predictable pattern, intermittent speech is influenced by fluctuating factors such as illness, stress, and sensory overload (Sparrow, 2017;
Zisk & Dalton, 2019;).
While communication breakdowns were not explicitly identified as an issue by autistic students in this study, the content of messages is also known to influence autistic people’s decisions for using speaking or non-speaking modes of communication. For example, when engaging in dialogue that involves detailed and factual information, an autistic person may be more inclined to use speaking communication. However, if the conversation requires recalling Discussion, Conclusion, and Recommendations 117 past experiences or thoughts about the future, autistic people may prefer non-speaking communication (Kim, 2015; Mamautistic, 2017). In the anthology titled Typed Words, Loud
Voices (Sequenzia & Grace, 2015), autistic self-advocate Von Woerkom explains that he uses typing as a strategy to slow the pace of communication to avoid communication breakdowns and to improve the clarity of his messages (Kimmel, 2015). Similarly, autistic author Sparrow (2017) prefers typing communication over speaking communication when feeling stressed from sensory stimulation and unfamiliar situations. Informed by the self-reports of autistic students both within and beyond this study, school jurisdictions must consider the “‘humanness’ of conventionally accepted communication modes” (Douglas et al., 2019, p.10) used in their schools and their subsequent impact on autistic students’ learning and sense of school belonging.
Research on the self-reported school experiences of autistic high school students who type or draw to communicate is extremely minimal. Woodfield & Ashby’s (2016) study is the only one identified throughout this research’s life cycle and is on supporting high school students with autism who type to communicate. Teachers who provide additional space and time for students who type or draw to communicate improve the authentic participation of autistic students and help create a culture of respect in classrooms (Woodfield & Ashby, 2016). Additionally, some autistic students have difficulty with “initiation, thus making timely contributions to academic and social conversations challenging” (2016, p.441). Hence, creating ethical spaces and time for autistic students to use non-speaking modes of communication is crucial to ensuring their voices are included and will help disrupt ableist classroom practices that favour the loudest and fastest student responses (Woodfield & Ashby, 2016).
Autistic students may also use non-speaking modes as a protective measure against social rejection and feelings of failure. For example, accounts of “I am always stumbling over my Discussion, Conclusion, and Recommendations 118 words or stuttering” (Alex) highlight that multiple experiences of unreliable speech may lead to fewer social interactions between autistic students and their peers, thus leading to a diminished sense of positive self, based on feelings of frustration and embarrassment. However, as discussed in the Literature Review, augmentative and alternative communication can be both emancipatory and oppressive to disabled people because ableist assumptions are embedded in their use, including socially preferred verbiage and assumptions of cognitive ability and personal agency
(Zisk & Dalton, 2019). Educator awareness and understanding of autistic students’ preference for using non-speaking forms of communication is minimal because there is an over-representation of research methods and educational practices that necessitate speaking communication for autistic students to participate (Bond & Fayette, 2018). Furthermore, authorization for students to access assistive technologies may be limited by jurisdictional policies that stipulate conditional access based on medical or speech-language assessments (Zisk & Dalton, 2019). Limiting attitudes and educational practices rooted in deficit models of eligibility fail to recognize the multiple internal and external factors impacting legitimate forms of autistic communication
(Baggs, 2012; Kedar, 2018b; Sinclair, 2010).
Conclusions and Recommendations for Educators and Policy Makers
Ableist beliefs and expectations are deeply embedded in the structure and practices of education. Consequently, autistic students continue to receive daily implicit and explicit messages telling them to be less autistic and more “normal”. The compound effect of these harmful messages is that students feel rejected, anxious, lonely, and depressed. Based on the views and experiences of autistic high school students, this study offers important insider information for educators and policymakers to consider as they pursue ways to improve the inclusive landscape of their schools structurally, professionally, and pedagogically. Although Discussion, Conclusion, and Recommendations 119 minimal in scope, previous research on the self-reported school experiences of high school autistic students supports many of this study’s findings and confirm the bearing teacher mindsets, pedagogical practices, school environments, and peer relationships continue to have on autistic students’ feelings of acceptance, belonging, and academic achievement. Findings from this study suggest that while improvements to inclusive education have been made since the early days of parent advocacy, commitment to removing barriers to increase access to fair and equitable education for speaking and non-speaking autistic students demands attention.
Inclusive Mindsets
Predominantly, the inclusive mindsets of teachers are a major factor contributing to the positive and negative school experiences of autistic students. Generally, autistic students feel a greater sense of school belonging when they are welcomed, their strengths and limitations are respected, and they have access to safe school spaces. It is worthy to note that none of the abovementioned characteristics of inclusive mindsets require specialized training or larger budgets, and they are not exclusive to the success of autistic students.
Balanced Perspectives
The value of including autistic voice and perspectives in school-based discussions helps educators and students co-create conditions for school success and generate a social world where autistic students can find belonging. Thus, educators and policymakers must seek balanced perspectives in their deliberations because the overrepresentation of outsider viewpoints may overshadow student perspectives and teacher craft knowledge (Conn, 2018; Mitchel &
Sutherland, 2020). Craft knowledge is viewed as the skills teachers intuitively develop over time to build strong relationships, including attending to the “personal circumstances, interests, history, and family lives” (Conn, 2018, p. 596) of their students. While creating positive school Discussion, Conclusion, and Recommendations 120 experiences for autistic students may start with the small but significant attitudes and actions of educators, the use of more precise pedagogical practices to support autistic students’ academic and social achievements is more nuanced, often requiring specialized training and side-by-side teacher coaching. Consequently, post-secondary teacher preparation programs interested in advancing the field of inclusive education might consider the ways in which their epistemological stances on persons with disabilities trickles down to school experiences of autistic students.
The novelty of this study is its inclusive design and self-representation of perspectives from autistic students who use speaking and non-speaking modes to communicate. To ensure autistic students “can act as experts and advocates on their own communication” (Woodfield &
Ashby, 2015, p.447), researchers and educators must commit to creating more enabling conditions for autistic students; which requires adjustment to our over reliance on standardized tests and evidenced-based treatments to guide research, practice, and policy.
Based on autistic high school students’ self-reports, the following recommendations will assist school jurisdictions develop policies and strengthen practices to more ethically and equitably support autistic students. The recommendations are organized into three categories: 1)
Pedagogical Practices; 2) Shared Responsibilities; and 3) Systems Support. The impact of the following recommendations is strengthened when educators thoroughly consider them in the context of their dynamic and evolving school ecologies, including infrastructure, resources, student population, staff knowledge and experience, and leadership philosophies.
Pedagogical Practices
1. Ensure autistic students are greeted at the beginning of each class. This serves as a
natural check-in between teacher and student to enable the identification of any Discussion, Conclusion, and Recommendations 121
required accommodations to support the sensory, social, and academic success of
the student.
2. Connect with autistic students by being relatable; including talking about interests,
sharing stories, and using humour.
3. Be organized and knowledgeable about the subject matter and passionate about
teaching.
4. Provide clear course outlines and timelines for assignments, presentations, and
exams.
5. Provide flexible opportunities for autistic students to showcase their knowledge and
interests in personally meaningful ways.
6. Include autistic students in the identification of curricular adaptations and
modifications. Clearly communicate impact, if any, on assessments and grades.
7. Set regular in-person or virtual meetings with autistic students to support the
development of their self-advocacy skills, to celebrate achievements, and to
collaboratively respond to concerns and questions.
Shared Responsibilities
1. Provide alternate times and routes for student transitions between classes.
2. Provide alternative spaces and times for autistic students to eat lunch and take
breaks.
3. Allow autistic students to wear sunglasses and hats to block artificial lights, and
noise-cancelling headphones to reduce auditory stimuli. Discussion, Conclusion, and Recommendations 122
4. To promote psychological and physical feelings of safety, provide autistic students
non-contingent access to low arousal spaces that are easily accessible and non-
stigmatizing.
5. Co-identify classroom seating options that respect autistic students’ sensory, social,
and communicative preferences.
6. Provide flexible opportunities for autistic students to select their preferred mode of
speaking and non-speaking communication.
7. Consider the impact of sensory, social, and academic factors on autistic students’
preferences for the single or interchangeable use of speaking and non-speaking
modes of communication.
8. Provide equitable classroom participation opportunities by giving autistic students
additional time to process and respond to information.
9. Ensure autistic students have access to multi-disciplinary specialized supports,
including speech-language pathologists, occupational therapists, physiotherapists,
psychologists, resource teachers, and school counsellors.
10. Knowing that peer support is the most robust defence against bullying, imbed
mentorship and leadership opportunities into school-wide practices to support the
development of positive peer networks and interdependence between diverse
groups of students.
11. Conduct regular school-wide celebrations of positive and inclusive attitudes and
actions of all students and staff.
Systems Support Discussion, Conclusion, and Recommendations 123
1. Consider ways in which standardized and non-standardized assessments perpetuate
normative expectations of speaking voice as rational voice and how this may lead
to inaccurate assumptions of cognitive and academic ability of autistic students.
2. Support autistic students’ right for freedom of expression (CRC, 2006) by
providing access to non-stigmatizing alternative modes of non-speaking
communication, including assistive technologies, art, and music.
3. Support autistic students right to self-select the least restrictive modes of
communication (CRC, 2006) by removing barriers to self-advocacy, including
policies that require autistic students to provide medical letters, psycho-educational
assessments, speech-language assessments, and occupational therapy assessments
to receive curricular adaptations and modifications and access assistive
technologies.
4. Provide flexible options for learning, including online and in-person learning
spaces.
5. Ensure anti-bullying policies adequately support students with disabilities and
clearly outlines proactive and protective measures that do not “blame the victim”.
6. Include perspectives of persons with disabilities in school design, policy
development, and school improvement planning.
Benefits of the Research and Considerations for Future Research
Benefits of the Research
Since my original review of literature on the self-reported school experiences of autistic students, a new meta-synthesis was published, titled “How pupils on the Autism Spectrum make sense of themselves in the context of their experiences in a mainstream school setting: A Discussion, Conclusion, and Recommendations 124 qualitative meta-synthesis” (Williams, et al., 2019). The meta-analysis presents similar themes found in this research study, specifically related to the importance of autistic students developing relationships with teachers and peers, and the impact of school environments. However, compared to the numerous articles examining the phenomena, the authors of this meta-synthesis insightfully point out that each of the 17 reviewed studies represented “the voice of verbally and cognitively able, male pupils in mainstream secondary schools in Western societies” (Williams et al., 2019, p.11). The disproportionate representation of speaking voice in autism research continues to be problematic and can be attributed to the researcher’s beliefs on legitimate forms of knowledge and ableist methods used in research (Fayette & Bond, 2017).
Based on “actually autistic” (Craine, 2020, p. 263) experiences, this study sought to better understand the school experiences of autistic high school students and improve ableist research practices used to include autistic students in research. Thus, the benefits of this research are that it:
a) Improves educator understanding of autistic students’ school experiences.
b) Highlights priorities for school-based and jurisdictional reform to improve the
educational experiences of autistic students.
c) Informs policy revisions and future development.
d) Informs professional development topics and the identification of resources to
support autistic students.
e) Assists colleges and universities develop teacher preparation programs that
strengthen beginning teachers’ knowledge and ability to support autistic students.
f) Signals to the autistic community that they are valued, and their perspectives matter
in research and education. Discussion, Conclusion, and Recommendations 125
g) Advances literature on the self-reported school experiences of autistic students
attending schools in Canada; and
h) Provides a methodological example to fellow researchers on ways to create ethical
research spaces that improve the inclusion of speaking and non-speaking autistic
voice in research.
Considerations for Future Research
I have framed my considerations for future research as questions. These questions can be used to guide future research on autistic first voice experience. These considerations are offered based on my experiences as an educator and a researcher. Item six is based on Pellicano et al.’s
(2014) study, which highlighted research priorities articulated by the UK autism community. I believe that this item is relevant to educators and practitioners in the field of inclusive education in Canada. The considerations and questions for future research are:
1. What relationship exists between the physical environment assessments are
completed in and diagnostic outcomes for autistic students?
2. What opportunities exist for autistic students to use diverse modes of speaking and
non-speaking communication to complete standardized and non-standardized
assessments?
3. If autistic students were to design a school, what would it look like?
4. In what ways can teachers and autistic students co-create micro spaces within macro
school spaces?
5. How can school communities adopt “nothing about us, without us” practices to
improve the inclusive education experiences of autistic students? Discussion, Conclusion, and Recommendations 126
6. How best do autistic students learn in inclusive settings and are their differences
between elementary, middle, and high school settings? (Pellicano et al., 2014).
Limitations and Delimitations
Based on reflection throughout the research lifecycle, including the process of receiving ethical approval and engagement with participants during data collection, there are several limitations to this study. First, while an autistic colleague reviewed the research proposal, an autistic person did not review the data or the discussion of findings. Having the perspective of an autistic person as collaborator during the analysis of data would help to minimize ableist interpretations of autistic experiences and would enrich the discussion of findings. Second, not all participants received the same compensation for participating in the research. Participants in
Phase 1 and Phase 2 did not receive two dollars compensation for completing the survey and only participants in Phase 2, and Phase 3 received a twenty-five-dollar Amazon eGift card for completing the online email interview. Third, while the 30-minute email interview seemed like a reasonable amount of time to interact with participants, an option to complete the email interview asynchronously may have provided participants more space and time to reflect on their school experiences and type their responses. Fourth, while most participants preferred non- speaking modes of communication, an option for participants to interview via phone call or
Skype may have been beneficial. Fifth, increased representation of participants outside of
Ontario, British Columbia, and Alberta, may have improved researcher and educator understanding of student experiences across Canada. Lastly, the sample size was small and non- randomized and there was an English only version of the study.
Delimitations of the study are: proof of diagnosis; IQ Scores; identification of co-occurring diagnoses such as attention deficit hyperactivity disorder (ADHD) or anxiety; the number of Discussion, Conclusion, and Recommendations 127 years in high school; attendance rates; family context; access to community supports such as speech-language therapy; access to school supports and resources; teacher training and experience; inclusive school policies; building size; and total school population.
Researcher Reflections
As I reflect on this research study from inception to now, I am left with two thoughts. The first thought challenges my ableist assumptions on autistic people’s abilities, including their supposed lack of self and social awareness, and second, the treatment of disabled people during the COVID-19 pandemic.
The more I immerse myself in the narratives of speaking and non-speaking autistic people, including autistic academics, bloggers, novelists, political activists, the more conscious I have become to how deeply aware autistic people are on the historical and current medical, social, and political injustices against their community and the ensuing effects. While I hesitate to share this thought because it is noticeably ableist, it is important to talk about because it indicates that the autistic community’s massive efforts to reclaim their voice are working and positively impacting social change. Personally, and professionally I am much more aware of loud voices, token voices, and missing voices at the table and how particular narratives are used to defend positions of power. I am also more aware of how knowledge construction is influenced by both what is said and what is left unsaid and that researchers and educators need to engage in more ethical practices ensuring diverse and opposing voices are equally included. Ethical practices, such as providing accessible opportunities for self-representation of non and minimally speaking autistic voice, help to re-balance power dynamics that have led to the pathologisation of autism.
Researchers, educators, and autism allies need to find ways to mobilize inclusive practices
(Kapp, 2020) to relieve the massive pressure on the autistic community to “solve problems [and Discussion, Conclusion, and Recommendations 128 injustices] they did not create” (p.10). As Sinclair (1993) states, “We need you. We need your help and your understanding. Your world is not very open to us, and we would not make it without your strong support” (para.17).
Ironically, this leads me to our current reality, the COVID-19 pandemic. In response to people’s unfamiliar feelings of loneliness, isolation, and fear during the current pandemic, autistic Maxfield Sparrow offers words of encouragement to autistic comrades in their blog post titled “Autistic in the pandemic: A call to action” (March 19, 2020). Sparrow encourages autistic people to resist the temptation to jest about non-autistics having to social-distance, self-isolate, and feel the impacts of social exclusion. Instead, Sparrow states with pride that “it’s time to own
[that we have spent our entire lives preparing for social distancing] and talk about our possible roles in this historic time” (para. 2). Sparrow goes on to say:
Be patient with them - coping with being alone is a skill like any other. We have had more
chances to practice it, just as people with majority neurotypes have had more chances than
us to practice socialization. Now we are the experts, and they are the ones who are
deficient in a needed skill. We can help them, and we can do it with more kindness and
compassion than many of us experienced at the hands of “helping” professionals in the
past. So many of us are experts at loving without touching.
I am taken aback by the irony and humbled by the grace and undeserved kind-heartedness offered by Sparrow and others in the autistic community who offer words of reassurance including its “okay not to be okay” (den Houting, 2020, p.2) towards a society that historically, and currently, only offers mistreatment and marginalization. It is clear; we need all types of people. Discussion, Conclusion, and Recommendations 129
Conclusion
This study addresses a gap in the literature on the self-reported school experiences of speaking and non-speaking autistic high school students within a Canadian context. Overall, autistic students report that their high school experiences are mediocre at best and that Canadian inclusive practices and policies need improvement. These findings contribute to researcher and educator understanding of the underlying features contributing to autistic students’ experiences and offer recommendations to educators and policymakers to improve their schools’ inclusive landscape and the academic and wellbeing outcomes of autistic students. While improvements could be made to the inclusive design of this research, it offers a promising example to fellow researchers and educators to investigate ways to improve the inclusion of minimally or non- speaking and speaking autistic voices in their work. Further research that supports the use of multiple modes of speaking and non-speaking communication is strongly warranted and will continue to disrupt power differentials between disabled and non-disabled people and ableist standards and practices used in research and education. 130
References
Abowitz, D. & Toole, M, (2010). Mixed method research: Fundamental issues of design,
validity, and reliability in construction research. Journal of Construction Engineering and
Management, 136(1), 1-23. https:/doi.org/10.1061/(ASCE)CO.1943-7862.0000026
Ahmed, S. (2002). This other and other others. Economy and Society, 31(4), 558-572.
Alberta Education. (2004). Standards for special education.
https://education.alberta.ca/media/1626539/standardsforspecialeducation.pdf
Alberta Education. (2020). Safe and caring schools. https://www.alberta.ca/safe-and-caring-
schools.
Alberta Teachers’ Association. (2018, September, 13). Inclusion means classrooms that are
more complex.
https://www.teachers.ab.ca/News%20Room/The%20Learning%20Team/Vol22/Num1/Pag
es/InclusionMeans.aspx
Alderson, P., & Morrow, V. (2011). The ethics of research with children and young people: A
practical handbook. SAGE Publications., https://doi.org/10.4135/9781446268377
Aldridge, J. (2007). Picture this: The use of participatory photographic research methods with
people with learning disabilities. Disability & Society, 22(1), 1–
17. https://doi.org/10.1080/09687590601056006
Al-Jabi, S., Sawalha, A., Sweileh, W. & Zyoud, S. (2016). Bibliometric profile of the global
scientific research on autism spectrum disorders. Springer Plus, 5(1), 1480.
https://doi:10.1186/s40064-016-3165-6
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders
(5th ed.). American Psychiatric. 131
Ainscow, M., & Miles, S. (2008). Making education for all inclusive: Where
next? Prospects, 38(1), 15–34. https://doi.org/10.1007/s11125-008-9055-0
Anastasiou, D. J., Kauffman, M., & Di Nuovo, S. (2015). Inclusive education in Italy:
Description and reflections on full inclusion. European Journal of Special Needs
Education, 30(4), 429–443. https://doi.org/10.1080/08856257.2015.1060075
Anderson, A., Everhart, N., & Woods, J. (2019). Autism and online recruiting methods: A
comparison of Mechanical Turk and discussion forums. First Monday, 24(9). Advance
online publication. https://doi.org/10.5210/fm.v24i9.10105
Aroh, V. (2014, September, 5). Data credibility: A critical dimension to data quality. Verdantis:
Data Driven Performance. http://blogs.verdantis.com/data-credibility-critical-dimension-
data-quality-2/
Artiles, J., Kozleski, B., Dorn, S. & Christensen, C. (2006). Learning in inclusive education
research: Re-mediating theory and methods with a transformative agenda. Review of
Research in Education, 30(1), 65–108. https://doi.org/10.3102/0091732X030001065
Ashburner, J., Saggers, B., Campbell, M. A., Dillon-Wallace, J. A., Hwang, Y. S., Carrington,
S., & Bobir, N. (2019). How are students on the autism spectrum affected by bullying?
Perspectives of students and parents. Journal of Research in Special Educational
Needs, 19(1), 27–44. https://doi.org/10.1111/1471-3802.12421
Ashburner, J., Ziviani, J., & Rodger, S. (2010). Surviving in the mainstream: Capacity of
children with Autism Spectrum Disorders to perform academically and regulate their
emotions and behavior at school. Research in Autism Spectrum Disorders, 4(1), 18–
27. https://doi.org/10.1016/j.rasd.2009.07.002 132
Ashby, C., & Causton-Theoharis, J. (2009). Disqualified by the human race: A close reading of
the autobiographies of individuals identified as autistic. International Journal of Inclusive
Education,13(5), 501–516. https://doi.org/10.1080/13603110801886673
Aspinall, A., & Murray, D. (2006). Getting IT. Using information Technology to Empower
People with Communication Difficulties. Jessica Kingsely.
Aspy, R., & Grossman, B. G. (2008). The Ziggurat model: A framework for designing
comprehensive interventions for individuals with high-functioning Autism and Asperger
Syndrome. Autism Asperger Publishing Company.
Attwood, T. (1997). Asperger’s syndrome: A guide for parents and professionals. Jessica Kinsley
Publishers.
Attwood, T. (2004). Cognitive behavior therapy for children and adults with Asperger’s
syndrome. Behaviour Change, 21(3), 147–
161. https://doi.org/10.1375/bech.21.3.147.55995
Attwood, T., Evans, C., & Lesko, A. (Eds.). (2014). An Aspie’s guide to living with meltdowns:
been there. Done that. Try this! Jessica Kingsley Publishers.
Autism Manchester. (2017). Guidelines for conducting research with the Autistic
community. https://www.research.manchester.ac.uk/portal/files/81355511/GuidelinesSept2
017pdfversion.pdf
Autistic Self-Advocacy Network. (2016). A voice for all: Why I’m fighting to help Autistic
students access the form of communication that works best for
them. https://autisticadvocacy.org/2016/05/a-voice-for-all-why-im-fighting-to-help-
autistic-students-access-the-form-of-communication-that-works-best-for-them/ 133
Autistic Self-Advocacy Network. (2018). Nothing about us without
us. https://autisticadvocacy.org
Autism Society of America. (2018). About the Autism society. http://www.autism-
society.org/about-the-autism-society/
Autism Speaks. (2018). What is autism? http://www.autismspeaks.ca/about-autism/what-is-
autism/
Bagatell, N. (2010). From cure to community: Transforming notions of autism. Journal of the
Society for Psychological Anthropology, 38(1), 33–55. https://doi.org/10.1111/j.1548-
1352.2009.01080.x
Baggs, A. (2012). Untitled. In J. Bascom (Ed.), Loud hands: Autistic people, speaking (pp.324-
342). Autistic Self Advocacy Network.
Bampton, R., & Cowton, C. J. (2002). The e-interview. Forum Qualitative Social Research, 3(2).
Advance online publication. https://doi.org/10.17169/fqs-3.2.848
Barad, K. (2012). “Matter feels, converses, suffers, desires, yearns and remembers”.
In Dolphijn & van der Tuin (Ed.), New Materialism: Interviews & Cartographies. pp. 48-
70. University of Michigan Library: Open Humanities
Press. http://openhumanitiespress.org/books/download/Dolphijn-van-der-Tuin_2013_New-
Materialism.pdf
Barnes, C., & Oliver, M. (2012). The New Politics of Disablement. Palgrave Macmillian,
Eastbourne.
Baron-Cohen, S., Leslie, A., & Frith, U. (1985). Does the autistic child have a “theory of
mind”? Cognitive Development, 21(1), 37–46. https://doi.org/10.1016/0010-
0277(85)90022-8 134
Bascom, J. (2012). Quiet hands. In J. Bascom (Ed.), Loud hands: Autistic People, Speaking (pp.
177–183). The Autistic Press.
Bazeley, P. (2009). Analysing Mixed Methods Data: Mixed Methods research for Nursing and
the Health Sciences. Wiley. https://doi.org/10.1002/9781444316490.ch6
Benford, P., & Standen, P. J. (2011). The use of email-facilitated interviewing with higher
functioning autistic people participating in a grounded theory study. International Journal
of Social Research Methodology, 14(5), 353–
368. https://doi.org/10.1080/13645579.2010.534654
Bergenmar, J., Rosqvist, H. B., & Lönngren, A. S. (2015). Autism and the question of the
human. Literature and Medicine, 33(1), 202–221. https://doi.org/10.1353/lm.2015.0009
Berinsky, A. J., Huber, G. A., & Lenz, G. S. (2012). Evaluating online labor markets for
experimental research: Amazon.com’s Mechanical Turk. Political Analysis, 20(3), 351–
368. https://doi.org/10.1093/pan/mpr057
Bettleheim, B. (1967). The empty fortress: Infantile Autism and the birth of the self. The Free
Press.
Beukelman, D., & Mirenda, P. (2005). Augmentative & alternative communication: Supporting
children & adults with complex communication needs (3rd ed.). Paul H. Brookes.
Bian, H. (n.d) PowerPoint on Mixed Methods Research, Office for Faculty of Excellence.
Biklen, D. (2005). Autism and the Myth of the Person Alone. NYU Press.
Billawala, A., & Wollbring, G. (2014). Analyzing the discourse surround Autism in the New
York Times using ableism lens. Disability Studies Quarterly, 34. https://dsq-
sds.org/article/view/3348/3524 135
Blacher, J., Howell, E., Lauderdale-Littin, S., Digennaro Reed, F. D., & Laugeson, E. A. (2014).
Autism spectrum disorder and the student teacher relationship: A comparison study with
peers with intellectual disability and typical development. Research in Autism Spectrum
Disorders, 8(3), 324–333. https://doi.org/10.1016/j.rasd.2013.12.008
Blatchford, P., Bassett, P., Brown, P., & Webster, R. (2009). The effect of support staff on pupil
engagement and individual attention. British Educational Research Journal, 35(5), 661–
686. https://doi.org/10.1080/01411920902878917
Bloomberg. L. & Volpe, M. (2015). Completing your qualitative dissertation: A roadmap
from beginning to end. (3rd ed). Los Angeles
Bowker, N., & Tuffin, K. (2004, June). Using the Online Medium for Discursive Research about
People with Disabilities. Social Science Computer Review, 22, 228–241. Advance online
publication. https://doi.org/10.1177/0894439303262561
Braidotti, R. (2013). The posthuman. Polity.
Braidotti, R. (2016). Posthuman critical theory. Banerji, D. & Paranjape, M. (Eds.). Critical
Posthumanism and Planetary Futures. 13-32. Springer. https://doi.org/10.1007/978-81-
322-3637-5_2
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in
Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
Brede, J., Remington, A., Kenny, L., Warren, K., & Pellicano, E. (2017). Excluded from school:
Autistic students’ experiences of school exclusion and subsequent re-integration into
school. Autism & Developmental Language Impairments, 2. Advance online
publication. https://doi.org/10.1177/2396941517737511 136
Bregmen, J. D., & Higdon, C. (2012). Definitions and clinical characteristics of autism spectrum
disorders. Routledge.
British Psychological Society. (2014). Code of Human Research
Ethics. https://www1.bps.org.uk/system/files/Public%20files/inf180_web.pdf
Broderick, A. A., & Kasa-Hendrickson, C. (2006). “i am thinking that speech is asinine”:
Narrating complexities and rethinking the notion of “independence” in
communication. Equity & Excellence in Education, 39(2), 176–
186. https://doi.org/10.1080/10640260600672310
Brosnan, M., & Gavin, J. (2015). Are ‘friends’electric? In L. Rosen (Ed.), Wiley Handbook of
Psychology, Technology, and Society (pp. 250–270). Wiley Blackwell.
Brown, L. (2011). The significance of semantics: Person first language: Why it matters. Autistic
Hoya. https://www.autistichoya.com/2011/08/significance-of-semantics-person-first.html
Brown, B., Alonso-Yanez, G., Friesen, S., & Jacobsen, M. (2020). High school redesign:
Carnegie Unit as a catalyst for change. Canadian Journal of Educational Administration
and Policy, 193, 97–114.
Bryman, A., & Cassell, C. (2006). The researcher interview: A reflexive perspective. Qualitative
Research in Organizations and Management, 1(1), 41–
55. https://doi.org/10.1108/17465640610666633
Bryson, C. (2008). Social methods research (3rd ed.). Oxford University.
Buhrmester, M., Kwang, T., & Gosling, S. D. (2011). Amazon’s mechanical Turk: A new source
of inexpensive, yet high-quality, data? Perspectives on Psychological Science, 6(1), 3–
5. https://doi.org/10.1177/1745691610393980 137
Cage, E., Di Monaco, J., & Newell, V. (2018). Experiences of autism acceptance and mental
health in autistic adults. Journal of Autism and Developmental Disorders, 48, 473–
484. https://doi.org/10.1007/s10803-017-3342-7
Calgary Board of Education. (2018). Facts & figures. http://www.cbe.ab.ca/about-us/about-the-
cbe/Pages/Facts-and-Figures.aspx
Calgary Catholic School Board.
(2018). Schools. https://www.cssd.ab.ca/School/Pages/Default.aspx
Campbell, M. A., Slee, P. T., Spears, B., Butler, D., & Kift, S. (2013). Do cyberbullies suffer
too? Cyberbullies’perceptions of the harm they cause to others and to their own mental
health. School Psychology International, 34(6), 613–
629. https://doi.org/10.1177/0143034313479698
Cardiff, S. (2012). Critical and creative reflective inquiry: Surfacing narratives to enable learning
and inform action. Educational Action Research, 20(4), 605–
622. https://doi.org/10.1080/09650792.2012.727653
Cariou, W. (2014). Edgework: Indigenous poetics as re-placement. In N. McLeod (Ed.),
Indigenous poetics in Canada (pp. 31–38). Wilfrid Laurier University Press.
Carlson, L. (2013). Research ethics and intellectual disability: Broadening the debates. The Yale
Journal of Biology and Medicine, 86(3), 303.
Carter, M., & Scherer, S. (2013). Autism spectrum disorder in the genetics clinic: A
review. Clinical Genetics, 83(5), 399–407. https://doi.org/10.1111/cge.12101
Carter, S. (2009). Bullying of Students with Asperger Syndrome. Issues in Comprehensive
Pediatric Nursing, 32(3), 145–154. https://doi.org/10.1080/01460860903062782 138
Cascio, M. A., & Racine, E. (2018). Person-oriented research ethics: Integrating relational and
everyday ethics in research. Accountability in Research, 25(3), 170–
197. https://doi.org/10.1080/08989621.2018.1442218
Casio, A., Weiss, J., Racine, E., Camevale, F., Dubois, M., Evely, B., . . . Yaraghi, Z. (2019,
January). Person-oriented ethics for Autism research: Task force report. Montreal,
QC. https://docs.wixstatic.com/ugd/94bcd2_8506630492e34be694ef6dc0732d04d9.pdf
Centre for Disease Control and Prevention. (2020). Autism Spectrum Disorder (ASD): Signs and
symptoms. https://www.cdc.gov/ncbddd/autism/data.html
Chamak, B. (2008). Autism and social movements: French parents’ associations and
international autistic individuals’ organisations. Sociology of Health & Illness, 30(1), 76–
96. https://doi.org/10.1111/j.1467-9566.2007.01053.x
Chandrasekhar, T., & Sikich, L. (2015). Challenges in the diagnosis and treatment of depression
in autism spectrum disorders across the lifespan. Dialogues in Clinical
Neuroscience, 17(2), 219–227. https://doi.org/10.31887/DCNS.2015.17.2/tchandrasekhar
Charlton, J. (2000). Nothing about us without us. University of California Press.
Charman, T., Pelicano, L., Peacey, L., Peacey, N., Forward, K., & Dockrell, J. (2011). What Is
Good Practice in ASD Education? University of London, Institute of Education.
Charmaz, K. (2012). Mixing or adding methods? In N. Denzin & M. Giardina (Eds.), Qualitative
Inquiry and the Politics of Advocacy (pp. 123–143).
Routledge., https://doi.org/10.4324/9781315421452
Chown, N., Robinson, J., Beardon, L., Downing, J., Hughes, L., Leatherland, J., Fox, K.,
Hickman, L., & MacGregor, D. (2017). Improving research about us, with us: A draft 139
framework for inclusive autism research. Disability & Society, 32(5), 720–
734. https://doi.org/10.1080/09687599.2017.1320273
Clarke, A., & Star, S. (2008). The social worlds framework: A theory/Methods approach.
In The Handbook of Science and Technology Studies (pp. 113–137). MIT Press.
Cohen, M., Copi, I., & Flage, D. (2006). Essentials of logic (2nd ed.). Pearson Education.
Cohen, L., Manion, L., & Morrison, K. (2011). The ethics of educational and social research. In
L. Cohen, L. Manion, & K. Morrison (Eds.), Research Methods in Education (7th ed., pp.
75–104). Routledge.
Cohmer, S. (2014, August). Early infantile autism and the refrigerator mother theory (1943-
1970). The Embryo Project Encyclopedia. https://embryo.asu.edu/pages/early-infantile-
autism-and-refrigerator-mother-theory-1943-1970
Communication Disabilities Access Canada. (2020). Accessible Canada
Act.https://www.cdacanada.com/resources/accessible-canada-act/reports/
Conn, C. (2014). Investigating the social engagement of children with autism in mainstream
schools for the purpose of identifying learning targets. Journal of Research in Special
Educational Needs,14(3), 153–159. https://doi.org/10.1111/1471-3802.12010
Conn, C. (2018). Pedagogical intersubjectivity, autism and education: Can teachers teach so that
autistic pupils learn? International Journal of Inclusive Education, 22(6), 594–
605. https://doi.org/10.1080/13603116.2017.1390003
Corbin, J., & Strauss, A. (2008). Basics of Qualitative Research: Techniques and Procedures for
Developing Grounded Theory (3rd ed.). Sage Publications,
Inc., https://doi.org/10.4135/9781452230153 140
Cordingley, P., Bell, M., Evans, D., & Firth, A. (2005). The Impact of collaborative CPD on
classroom teaching and learning. Research Evidence in Education Library, EPPI-Centre,
Social Science Research Unit, Institute of Education. University of London.
Coulthard, G. S. (2014). The politics of recognition in colonial contexts. In Red skin, white
masks: Rejecting the colonial politics of recognition (pp. 25–50). University of Minnesota
Press. https://doi.org/10.5749/minnesota/9780816679645.003.0002
Craine, M. (2020). Changing Paradigms: The emergence of the autism/neurodiversity manifesto.
In S. K. Kapp (Ed.), Autistic Community and the Neurodiversity Movement: Stories from
the Frontline (pp. 255–276)., https://link.springer.com/book/10.1007/978-981-13-8437-
0 https://doi.org/10.1007/978-981-13-8437-0_19
Crane, L., Goddard, L., & Pring, L. (2013). Autobiographical memory in adults with autism
spectrum disorder: The role of depressed mood, rumination, working memory and theory
of mind. Autism, 17(2), 205–219. https://doi.org/10.1177/1362361311418690
Creswell, J. W. (1998). Qualitative inquiry and research design: Choosing among five traditions.
SAGE Publications.
Creswell, J. (2005). Educational research: Planning, conducting, and evaluating quantitative and
qualitative approaches to research (2nd ed.). Merrill/Pearson Education.
Creswell, J. (2008). Educational research: Planning, conducting and evaluating quantitative and
qualitative research. Pearson Education, Inc.
Creswell, J. W., & Plano Clark, V. L. (2011). Designing and conducting mixed methods research
(2nd ed.). SAGE Publications.
Creswell, J. (2014). Research design: Qualitative, quantitative, and mixed methods approaches
(4th ed.). SAGE Publications. 141
Croswell, L., & Elliott, R. (2004) Committed teachers, passionate teachers: The dimension of
passion associated with teacher commitment and engagement. In Jeffrey, Ruth (Ed.) AARE
Conference 2004. AARE, Australia, Vic. Melbourne (pp. 1-12).
Daniel, L. S., & Billingsley, B. S. (2010). What boys with an autism spectrum disorder say about
establishing and maintaining friendships. Focus on Autism and Other Developmental
Disabilities,25(4), 220–229. https://doi.org/10.1177/1088357610378290
Danker, J., Strnadova, I., & Cumming, T. (2016). School experiences of students with autism
spectrum disorder within the context of student wellbeing: A review and analysis of the
literature. Australasian Journal of Special Education, 40(1), 59–
78. https://doi.org/10.1017/jse.2016.1
Davidson, J., & Henderson, V. (2010). Coming out’on the spectrum: Autism, identity and
disclosure. Social & Cultural Geography, 11(2), 155–
170. https://doi.org/10.1080/14649360903525240
Deckers, A., Muris, P., & Roelofs, J. (2017). Being on your own or feeling lonely?: Loneliness
and other social variables in youths with autism spectrum disorders. Child Psychiatry and
Human Development, 48(5), 828–839. https://doi.org/10.1007/s10578-016-0707-7 den Houting, J. (2020). Stepping out of isolation: Autistic people and COVID-19. Autism in
Adulthood: Challenges and Management, 2, 103–105. Advance online
publication. https://doi.org/10.1089/aut.2020.29012.jdh
Denscombe, M. (2007). The good researcher’s guide (3rd ed.). Open University Press.
Denscombe, M. (2010). The good researcher’s guide: For small scale research projects (4th ed.).
Open University Press. 142
DePape, A.-M., & Lindsay, S. (2016). Lived experiences from the perspective of individuals
with autism spectrum disorder: A qualitative meta-synthesis. Focus on Autism and Other
Developmental Disabilities, 31(1), 60–71. https://doi.org/10.1177/1088357615587504
De Schauwer, E., Van De Putte, I., & Davies, B. (2018). Collective biography: Using memory
work to explore the space-in-between normative and difference/disability. Qualitative
Inquiry, 24(1), 8–19. https://doi.org/10.1177/1077800417728959
Dewsbury, G., Clarke, K., Randall, D., Rouncefield, M., & Sommerville, I. (2004). The anti-
social model of disability. Disability & Society, 19(2), 145–
158. https://doi.org/10.1080/0968759042000181776
Dillon, G., Underwood, J., & Freemantle, L. (2016). Autism and the U.K. secondary school
experience. Focus on Autism and Other Developmental Disabilities, 31(3), 221–
230. https://doi.org/10.1177/1088357614539833
Dolezal, L. (2017). Representing posthuman embodiment: Considering feisability and the case of
Aimee Mullins. Women’s Studies, 46(1), 60–
75. https://doi.org/10.1080/00497878.2017.1252569
Domović, V., Vidović Vlasta, V., & Bouillet, V. (2017). Student teachers’ beliefs about the
teachers’ role in inclusive education. European Journal of Special Needs Education, 32(2),
175–190. https://doi.org/10.1080/08856257.2016.1194571
Donvan, J., & Zucker, C. (2016). In a different key: The story of Autism. Broadway Books.
Douglas, P., Rice, K., Runswick-Cole., A., Easton, M. F., Gibson.J., Gruson-Wood, E., Klar, E.,
Shields, R. (2019). Re-storying autism: A body becoming disability studies in education
approach. International Journal of Inclusive Education.
https://doi.org/10.1080/13603116.2018.1563835 143
Eddles-Hirsch, K. (2015). Phenomenology and educational research. International Journal of
Advanced Research, 3(8), 251–
260. http://www.journalijar.com/article/5631/phenomenology-and-educational-research/
Eisenberg, L. & Kanner, L. (1956). Childhood schizophrenia: Symposium, 1955:6. Early
infantile autism, 1943-1955. The American Journal of Orthopsychiatry, 26(3), 556–
566. https://doi.org/10.1111/j.1939-0025.1956.tb06202.x
Ellsworth, E. (1997). Teaching positions: Difference, pedagogy, and the Power of Address. New
Teachers College Press.
Eyal, G., Hart, B., Onculer, E., Oren, N., & Rossi, N. (2010). The Autism matrix. Polity Press.
Fayette, R., & Bond, C. (2018). A systematic literature review of qualitative research methods
for eliciting the views of young people with ASD about their educational
experiences. European Journal of Special Needs Education, 33(3), 349–
365. https://doi.org/10.1080/08856257.2017.1314111
Fernell, E., Giacobini, M., Gillberg, C., Lundstrom, S., Olsson, M., & Westerlund, J. (2015).
“Recovery” from the diagnosis of autism -and Then? Neuropsychiatric Disease and
Treatment, 7(11), 999–1005.
Fetters, M. D., Curry, L. A., & Creswell, J. W. (2013). Achieving integration in mixed methods,
designs-principles and practices. Health Services Research, 48(6pt2), 2134–
2156. https://doi.org/10.1111/1475-6773.12117
Fetters, M. D., & Freshwater, D. (2015). The 1 + 1 = 3 integration challenge. Journal of Mixed
Methods Research, 9(2), 115–117. https://doi.org/10.1177/1558689815581222 144
Fisher, P., & Goodley, D. (2007). The linear medical model of disability: Mothers of disabled
babies resist with counter-narratives. Sociology of Health & Illness, 29(1), 66–
81. https://www.ncbi.nlm.nih.gov/pubmed/17286706 https://doi.org/10.1111/j.1467-
9566.2007.00518.x
Fletcher-Watson, S., Apicella, F., Auyeung, B., Beranova, S., Bonnet-Brilhault, F., Canal-Bedia,
R., Charman, T., Chericoni, N., Conceição, I. C., Davies, K., Farroni, T., Gomot, M.,
Jones, E., Kaale, A., Kapica, K., Kawa, R., Kylliäinen, A., Larsen, K., Lefort-Besnard, J., .
. . Yirmiya, N.. (2017). Attitudes of the autism community to early autism research. In
Autism, 21. 61–74. SAGE Publications Ltd., https://doi.org/10.1177/1362361315626577
Flick, U. (2018). Triangulation. In Denzin & Lincoln (Eds.). The Sage Handbook of Qualitative
Research. (5th ed., pp. 444-461). SAGE Publications.
Foley, K., Blackmore, A., Girdler, S., O’Donnell, M., Glauert, R., Llewellyn, G., & Leonard, H.
(2012). To feel belonged: The voices of children and youth with disabilities on the
meaning of wellbeing. Child Indicators Research, 5(2), 375–
391. https://doi.org/10.1007/s12187-011-9134-2
Fombonne, E. (2009). Epidemiology of pervasive developmental disorders. Pediatric
Research, 65(6), 591–598. https://doi.org/10.1203/PDR.0b013e31819e7203
Foucault, M. (1982, Summer). The subject and power. Critical Inquiry, 8(4), 777–
795. https://doi.org/10.1086/448181
Foucault, M. (1988). Madness and civilisation, A history of insanity in an age of reason. Vintage
Books.
Foucault, M. (2001). The hermeneutics of the subject: Lectures at the college de France, 1981–
1982. Palgrave Macmillan. 145
Frable, D. E. S. (1997). GENDER, RACIAL, ETHNIC, SEXUAL, AND CLASS
IDENTITIES. Annual Review of Psychology, 48(1), 139–
162. https://doi.org/10.1146/annurev.psych.48.1.139
Friesen, D., Cresswell, J., Moore, C., & Dueck, K. (2019). Pragmatism and the conduct of
everyday life. Culture and Psychology, 25(2), 257–
265. https://doi.org/10.1177/1354067X18820674
Frith, U. (1991). Autistic psychopathy in childhood. In Autism and Asperger Syndrome (pp. 37–
92). https://doi.org/10.1017/CBO9780511526770.002
Frith, U. (2003). Autism: Explaining the enigma (2nd ed.). Blackwell.
Frith, U. (2008). Autism: A very short introduction. Oxford University
Press. https://doi.org/10.1093/actrade/9780199207565.001.0001
Froese-Germain, B. & Riel, R. (2012). Understanding Teachers’ Perspectives on Student Mental
Health. Findings From a National Survey. Canadian Teachers’ Federation.
https://files.eric.ed.gov/fulltext/ED544259.pdf
Gambone, M. A., Klem, A. M., Summers, J. A., Akey, T. A., & Sipe, C. L. (2004). Turning the
tide: The achievements of the first things first education reform in the Kansas City, Kansas
public school district. Youth Development Strategies, Inc.
Ganz, J. (2014). Aided augmentative and alternative communication for people with ASD.
Springer.
Geertz, C. (1973). The interpretation of cultures: Selected essays. Basic.
Gehlbach, H. (2014). Panorama student survey. Panorama
Education. https://www.panoramaed.com/panorama-student-survey 146
Gehlbach, H., & Brinkworth, M. E. (2011). Measure twice, cut down error: A process for
enhancing the validity of survey scales. Review of General Psychology, 15(4), 380–
387. https://doi.org/10.1037/a0025704
Geiger, T., Amrein-Beardsley, A., & Chan, S.-J. (2019). Student perception surveys for K-12
teacher evaluation in the United States: A survey of surveys. Education Policy, 6, 1–
16. https://doi.org/10.1080/2331186X.2019.1602943
Gillies, J. (2014). Critical Disability Theory. In Encyclopedia of Quality of Life and Well-Being
Research (pp. 1348–1350). Springer Netherlands., https://doi.org/10.1007/978-94-007-
0753-5_619
Girirajan, S., Kubina, R. M., & Polyak, A. (2015). Comorbidity of intellectual disability
confounds ascertainment of autism: Implications for genetic diagnosis. American Journal
of Medical Genetics: Neuropsychiatric Genetics, 168(8), 600–608.
Goldberg, A., & Patrino, L. (2009). Teen locked in autistic body finds voice. ABC
News.: https://abcnews.go.com/2020/MindMoodNews/story?id=8258204&page=1ed)
Goodall, C. (2015). Excluded by inclusion. Special Educational Needs Magazine, 74, 70–72.
Goodall, C. (2018). ‘I felt closed in and like I couldn’t breathe’: A qualitative study exploring the
mainstream educational experiences of autistic young people. Autism & Developmental
Language Impairments, 3. Advance online
publication. https://doi.org/10.1177/2396941518804407
Goodley, D. (2013). Dis/entangling critical disability studies. Disability & Society, 28(5), 631–
644. https://doi.org/10.1080/09687599.2012.717884
Goodley, D., Lawthom, R., & Runswick-Cole, K. (2014). Posthuman disability
studies. Subjectivity, 7, 342–361. https://doi.org/10.1057/sub.2014.15 147
Goodley, D., Lawthom, R., Liddiard, K., & Runswick-Cole, K. (2019). Provocations for Critical
Disability Studies. Disability & Society, 34(6), 972–
997. https://doi.org/10.1080/09687599.2019.1566889
Goodley, D., & Runswick-Cole, K. (2016). Becoming dishuman: Thinking about the human
through dis/ability. Discourse (Berkeley, Calif.), 37(1), 1–
15.https://doi.org/10.1080/01596306.2014.930021
Göransson, K., & Nilholm, C. (2014). Conceptual diversities and empirical shortcomings – A
critical analysis of research on inclusive education. European Journal of Special Needs
Education,29(3), 265–280. https://doi.org/10.1080/08856257.2014.933545
Government of Canada. (2014). Convention on the rights of persons with disabilities: Frist
report of
Canada. http://www.ccdonline.ca/media/international/Convention%20on%20the%20Right
s%20of%20Persons%20with%20Disabilities%20-
%20First%20Report%20of%20Canada.pdf
Government of Canada. (2018, August). Tri-council policy statement: Ethical conduct for
research involving humans (TCPS 2): Consent. http://www.pre.ethics.gc.ca/eng/policy-
politique/interpretations/consent-consentement/
Grandin, T. (2014). Review: The reason I jump: The inner voice of a thirteen-year old boy with
autism. Cerebrum, •••, 3.
Graveline, F. J. (1998). First voice as critical pedagogy. Circle works: Transforming Eurocentric
consciousness. Fernwood.
Gray, C. (2018). Carol gray social stories. https://carolgraysocialstories.com/social-stories/ 148
Greene, J., Caracelli, V., & Graham, W. (1989). Toward a conceptual framework for mixed-
method evaluation designs. Educational Evaluation and Policy Analysis, 11(3), 255–
274. https://doi.org/10.3102/01623737011003255
Greener, I. (2000). Designing social research: A guide for the bewildered. SAGE Publications.
Greydanus, D., & Toledo-Pereyra, L. (2012). Historical perspectives on autism: It’s record of
discovery and its present state of slipsism, skepticism, and sorrowful suspicion. Pediatric
Clinics of North America, 59(1), 1–11. https://doi.org/10.1016/j.pcl.2011.10.004
Gruson-Wood, J. F. (2016). Autism, expert discourses and subjectification: A critical
examination of applied behavioural therapies. Studies in Social Justice, 10(1), 38–
58. https://doi.org/10.26522/ssj.v10i1.1331
The Guardian. (2018, December 18). Human rights body calls on US school to ban electric
shocks on children. https://www.theguardian.com/us-news/2018/dec/18/judge-rotenberg-
center-electric-shocks-ban-inter-american-commission-human-rights
Guba, G., & Lincoln, Y. (1985). Naturalistic inquiry. SAGE Publications.
Guba, G. (1990). The paradigm dialog. SAGE Publications.
Guba, G., Lincoln, Y., & Lynham, S. (2018). Paradigmatic controversies, contradictions, and
emerging confluences, revisited. In N. Denzin, & Y. Lincoln. (Eds.), 108-150. The Sage
Handbook of Qualitative Research (5th ed.). SAGE Publications, Inc.
Hardy, I., & Woodcock, S. (2015). Inclusive education policies: Discourses of
difference, diversity and deficit. International Journal of Inclusive Education, 19(2), 141–
164. https://doi.org/10.1080/13603116.2014.908965 149
Harrington, C., Foster, M., Rodger, S., & Ashburner, J. (2014). Engaging young people with
Autism Spectrum Disorder in research interviews. British Journal of Learning
Disabilities, 42(2), 153–161. https://doi.org/10.1111/bld.12037
Hattie, J., & Clarke, S. (2019). Visible Learning: Feedback. Routledge.
Haug, P. (2017). Understanding inclusive education: Ideals and reality. Scandinavian Journal of
Disability Research, 19(3), 206–217. https://doi.org/10.1080/15017419.2016.1224778
Health & Medicine Week. (2015, October). New nursing research study findings reported from
Sultan Qaboos University: Differentiating between descriptive and interpretive
phenomenological research approaches. Gale Academic OneFile, p.
2411. https://journals.rcni.com/nurse-researcher/differentiating-between-descriptive-and-
interpretive-phenomenological-research-approaches-nr.22.6.22.e1344
Heiskanen, M., & Egerer, M. (2019). The conceptualisation of problem gambling in social
services: Email interviews with Finnish social services directors. Nordic Social Work
Research, 9(1), 29–41. https://doi.org/10.1080/2156857X.2018.1426625
Herbrechter, S. (2013). Posthuman. Bloomsberg Publishing.
Higashida, N. (2016). The reason I jump: The inner voice of a thirteen-year-old boy with
Autism. Random House Trade Paperbacks.
Hippler, K., & Klicpera, C. (2003). A retrospective analysis of the clinical case records of
‘autistic psychopaths’ diagnosed by Hans Asperger and his team at the University
Children’s Hospital Vienna. Philosophical Transactions of the Royal Society of London.
Series B, Biological Sciences, 358(1430), 291–301. https://doi.org/10.1098/rstb.2002.1197
Hollan, D. (2012b). On the varieties and particularities of cultural experience. Ethos (Berkeley,
Calif.), 40(1), 37–53. https://doi.org/10.1111/j.1548-1352.2011.01230.x 150
Holloway, S., & Valentine, G. (Eds.). (2000). Children’s geographies, playing, living, learning.
Routledge.
Howard, K., Katsos, K., & Gibson, J. (2019). Using interpretive phenomenological analysis in
autism research. Autism, 23(7), 1871–1876. https://doi.org/10.1177/1362361318823902
Huffington Post, U. K. (2016). The country’s biggest autism research group has a new
mission. https://www.huffingtonpost.co.uk/entry/cure-for-
autism_us_58062f2be4b0dd54ce3522b1
Humphrey, N., & Lewis, S. (2008). “Make me normal”: The views and experiences of pupils on
the autistic spectrum in mainstream secondary schools. Autism, 12(1), 23–
46. https://doi.org/10.1177/1362361307085267
Humphrey, N., & Lewis, S. (2008). What does “inclusion” mean for pupils on the autistic
spectrum in mainstream secondary schools? Journal of Research in Special Educational
Needs, 8(3), 132–140. https://doi.org/10.1111/j.1471-3802.2008.00115.x
Humphrey, N., & Symes, W. (2010). Perceptions of social support and experience of bullying
among pupils with autistic spectrum disorders in mainstream secondary schools. European
Journal of Special Needs Education, 25(1), 77–
91. https://doi.org/10.1080/08856250903450855
Hwang, Y. S., Dillon-Wallace, J., Campbell, M., Ashburner, J., Saggers, B., Carrington, S., &
Hand, K. (2018). How students with autism spectrum conditions understand traditional
bullying and cyberbullying. International Journal of Inclusive Education, 22(4), 391–
408. https://doi.org/10.1080/13603116.2017.1370736 151
International Society for Augmentative and Alternative Communication. (2014). ISAAC position
statement on Facilitated Communication. Augmentative and Alternative
Communication, 4(30), 357–358. https://doi.org/10.3109/07434618.2014.971492
James, N. (2016). Using email interviews in qualitative educational research: Creating space to
think and time to talk. International Journal of Qualitative Studies
in Education: QSE, 29(2), 150–163. https://doi.org/10.1080/09518398.2015.1017848
Johnson, R. E., Grove, A. L., & Clarke, A. (2019). Pillar Integration Process: A Joint Display
Technique to Integrate Data in Mixed Methods Research. Journal of Mixed Methods
Research, 13(3), 301–320. https://doi.org/10.1177/1558689817743108
Johnson, R. B., & Onwuegbuzie, A. J. (2004). Mixed methods research: A research paradigm
whose time has come. Educational Researcher, 33(7), 14–
26. https://doi.org/10.3102/0013189X033007014
Jones (2015). When the classroom feels hostile. Harvard Graduate School of Education, Usable
Knowledge: Relevant Research for Today’s
Educators. https://www.gse.harvard.edu/news/uk/15/08/when-classroom-feels-hostile
Kajamaa, A. (2012). Enriching action research with the narrative approach and activity theory:
Analyzing the consequences of an intervention in a public sector hospital in
Finland. Educational Action Research, 20(1), 75–
93. https://doi.org/10.1080/09650792.2012.647667
Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217–250.
Kanu, Y., & Glor, M. (2006). ‘Currere’to the rescue? Teachers as ’amateur intellectuals’ in a
knowledge society. Journal of the Canadian Association for Curriculum Studies, 4(2),
101–122. 152
Kapp, S. (Ed.). (2020). Autistic community and the neurodiversity movement: Stories from the
frontline. https://link.springer.com/book/10.1007/978-981-13-8437-
0 https://doi.org/10.1007/978-981-13-8437-0
Kapp, S., Gillespie-Lynch, K., Sherman, L., & Hutman, T. (2013). Deficit, difference, or both?
Autism and neurodiversity. Developmental Psychology, 49(1), 59–
71. https://doi.org/10.1037/a0028353
Kasari, C., Kaiser, A., Goods, K., Nietfeld, J., Mathy, P., Landa, R., Murphy, S., & Almirall, D.
(2014). Communication interventions for minimally verbal children with autism: A
sequential multiple assignment randomized trial. Journal of the American Academy of
Child and Adolescent Psychiatry, 53(6), 635–
646. https://doi.org/10.1016/j.jaac.2014.01.019
Kedar, I. (2018a, November, 3). An anecdotal survey. Ido in
Autismland. http://idoinautismland.com
Kedar, I. (2018b, October, 5). The 3 p’s of communication skeptics. Ido in
Autismland. http://idoinautismland.com/?p=779
Kemmis, S., & McTaggart, R. (1990). The action research reader. Deakin University Press.
Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016). Which
terms should be used to describe autism? Perspectives from the UK autism
community. Autism, 20(4), 442–462. https://doi.org/10.1177/1362361315588200
Khare, R., & Mullick, A. (2009). Designing inclusive educational spaces with reference to
autism. In Proceedings of the Human Factors and Ergonomics Society (Vol. 53, pp. 517–
520). https://doi.org/10.1177/154193120905300807 153
Kim, C. (2015). A barrier of sound, not of feeling. In A. Sequenzia & E. J. Grace (Eds.), Typed
Words, Loud Voices (pp. 17–20). Autonomous Press.
Kimmel, A. (2015). Interview. In A. Sequenzia & E. J. Grace (Eds.), Typed Words, Loud Voices
(pp. 29–30). Autonomous Press.
Kirkham, P. (2017). ‘The line between intervention and abuse’– autism and applied behaviour
analysis. History of the Human Sciences, 30, 107–126. Advance online
publication. https://doi.org/10.1177/0952695117702571
Klem, A. M., & Connell, J. P. (2004). Relationships matter: Linking teacher support to student
engagement and achievement. The Journal of School Health, 74(7), 262–
273. https://osse.dc.gov/sites/default/files/dc/sites/osse/page_content/attachments/Klem_a
nd_Connell_2004_JOSH_article.pdf
Kluth, P. (2003). You’re going to love this kid! Teaching students with Autism in inclusive
classrooms. Brookes.
Kopec, D. A. (2012). Environmental psychology for design. Fairchild Books.
Kotsopoulos, S. (2014). The parents of the child with autism. Encephalos, 51(1943), 23–27.
Kourti, M., & MacLeod, A. (2019). “I don’t feel like a gender, I feel like myself”: autistic
individuals raised as girls exploring gender identity. Autism in Adulthood: Knowledge,
Practice, and Policy, aut.2018.0001. https://doi.org/10.1089/aut.2018.0001
Krause, I., He, X. S., Gershwin, M., & Shoenfeld, Y. (2002). Brief report: Immune factors in
Autism: A critical review. Journal of Autism and Developmental Disorders, 32(4), 337–
345. https://doi.org/10.1023/A:1016391121003
Krumer-Nevo, M., & Sidi, M. (2012). Writing Against Othering. Qualitative Inquiry, 18(4),
299–309. https://doi.org/10.1177/1077800411433546 154
Kumashiro, K. (2002). Against repetition: Addressing resistance to anti-oppressive change in the
practices of learning, teaching, supervising, and researching. Harvard Educational
Review, 72(1), 67–93. https://doi.org/10.17763/haer.72.1.c11617526l7k46v6
Kurth, J. A., & Keegan, L. (2014). Development and use of curricular adaptations for students
receiving special education services. The Journal of Special Education, 48(3), 191–
203.https://doi.org/10.1177/0022466912464782
Lai, M.-C., Lombardo, M., Chakrabarti, B., & Baron-Cohen, S. (2013). Subgrouping the autism
‘spectrum’: Reflections on DSM-5. PLoS Biology, 11(4),
e1001544. https://doi.org/10.1371/journal.pbio.1001544
Lai, M.-C., Lombardo, M., & Baron-Cohen, S. (2014). Autism. Lancet, 383(9920), 896–
910. https://doi.org/10.1016/S0140-6736(13)61539-1
Lancaster, J., & Bain, A. (2010). The design of pre-service inclusive education courses and their
effects on self-efficacy: a comparative study. Asia-Pacific Journal of Teacher Education,
38, 117 - 128.
Lather, P. (1986). Issues of Validity in Openly Ideological Research: Between a Rock and a Soft
Place. Interchange, 17(4), 63–84. https://doi.org/10.1007/BF01807017
Lather, P. (1991). Getting smart: Feminist research and pedagogy with/in the postmodern.
Routledge. https://doi.org/10.4324/9780203451311
Lawlor, M. C., & Solomon, O. (2017). A phenomenological approach to the cultivation of
expertise: Emergent understandings of autism. Ethos (Berkeley, Calif.), 45(2), 232–
249. https://doi.org/10.1111/etho.12162
Layder, D. (2014). Doing excellent small scale research. SAGE Publications. 155
Lebenhagen, C. (2019). Including speaking and non-speaking voice in research. Autism in
Adulthood: Challenges and Management, 2, 128-131.
https://doi.org/10.1089/aut.2019.0002
Lee, S. H., Wehmeyer, M. L., Soukup, J. H., & Palmer, S. B. (2010). Impact of curriculum
modifications on access to the general education curriculum for students with
disabilities. Exceptional Children, 76(2), 213–
233. https://doi.org/10.1177/001440291007600205
Leedy, P., & Ormrod, J. (2001). Practical research: Planning and design (7th ed.). SAGE
Publications.
Lewis-Beck, M., Bryman, A., & Futing Liao, F. T. (2004). The SAGE encyclopedia of social
science research methods Thousand Oaks, CA: SAGE Publications,
Inc. https://doi.org/10.4135/9781412950589
Lindsay, S. Proulx., M., Thomson, N., & Scott, H. (2013). Educators’ challenges of including
children with Autism Spectrum Disorder in mainstream classrooms. International Journal
of Disability Development and Education, 60(4), 347–
362. https://doi.org/10.1080/1034912X.2013.846470
Little, L. (2002). Middle-class mothers’ perceptions of peer and sibling victimization among
children with Asperger’s syndrome and nonverbal learning disorders. Comprehensive
Child and Adolescent Nursing, 25(1), 43–
57. https://doi.org/10.1080/014608602753504847
Locke, J., Ishijima, E., Kasari, C., & London, N. (2010). Loneliness, friendship quality and the
social networks of adolescents with high-functioning autism in an inclusive school 156
setting. Journal of Research in Special Educational Needs, 10(2), 74–
81. https://doi.org/10.1111/j.1471-3802.2010.01148.x
Loomes, R., Hull, L., & Mandy, W. P. L. (2017, June 1). What is the male-to-female ratio in
Autism Spectrum Disorder? A systematic review and meta-analysis. Journal of the
American Academy of Child and Adolescent Psychiatry. Elsevier
Inc. https://doi.org/10.1016/j.jaac.2017.03.013
Loreman, T. (2014). Measuring inclusive education outcomes in Alberta, Canada. International
Journal of Inclusive Education, 18(5), 459-483.
Lovaas, O. I. (1981). Teaching developmentally disabled children: The me book. University Park
Press.
Lovaas, O. I., & Buch, G. (1997). Intensive behavioral intervention with young children with
autism. In N. N. Singh (Ed.), Prevention and treatment of severe behavior problems:
Models and methods in developmental disabilities (pp. 61–86). Thomson Brooks/Cole
Publishing Co.
Loyd, D. (2013). Obtaining consent from young people with autism to participate in
research. British Journal of Learning Disabilities, 41(2), 133–
140. https://doi.org/10.1111/j.1468-3156.2012.00734.x
Lundström, S., Reichenberg, A., Anckarsäter, H., Lichtenstein, P., & Gillberg, C. (2015). Autism
phenotype versus registered diagnosis in Swedish children: Prevalence trends over 10 years
in general population samples. BMJ (Online), 350, h1961. Advance online
publication. https://doi.org/10.1136/bmj.h1961 157
Lynch, S., & Irvine, A. (2009). Inclusive education and best practice for children with autism
spectrum disorder: An integrated approach. International Journal of Inclusive
Education, 13(8), 845–859. https://doi.org/10.1080/13603110802475518
Maciver, D., Hunter, C., Adamson, A., Grayson, Z., Forsyth, K., & McLeod, I. (2018).
Supporting successful inclusive practices for learners with disabilities in high schools: A
multisite, mixed method collective case study. Disability and Rehabilitation, 40, 1708-
1717. Advance online publication. https://doi.org/10.1080/09638288.2017.1306586
Maïano, C., Normand, C., Salvas, M.-C., Moullec, G., & Aimé, A. (2016). Prevalence of school
bullying among youth with Autism Spectrum Disorders: A systematic review and meta-
analysis. Autism Research, 9(6), 601–615. https://doi.org/10.1002/aur.1568
Majoko, T. (2016). Inclusion of children with Autism Spectrum Disorders: Listening and hearing
voices from the grassroots. Journal of Autism and Developmental Disorders, 46, 1429–
1440. https://doi.org/10.1007/s10803-015-2685-1
Makin, C., Hill, V., & Pellicano, E. (2017). The primary-to-secondary school transition for
children on the autism spectrum: A multi-informant mixed-methods study. Autism &
Developmental Language Impairments, 2, 1–
17. https://doi.org/10.1177/2396941516684834
Mamautistic. Time, mutism, and levels of communication. June 13,
2017. https://mamautistic.wordpress.com/2017/06/13/time-mutism-and-levels-of-
communication
Marshall, D., & Goodall, C. (2015). The right to appropriate and meaningful education for
children with ASD. Journal of Autism and Developmental Disorders, 45(10), 3159–
3167. https://doi.org/10.1007/s10803-015-2475-9 158
Martin, C. S. (2016). Exploring the impact of the design of the physical classroom environment
on young children with autism spectrum disorder (ASD). Journal of Research in Special
Educational Needs, 16(4), 280–298. https://doi.org/10.1111/1471-3802.12092
Massey, D. (2005). For space. SAGE Publications.
Masten, C. L., Eisenberger, N. I., Borofsky, L. A., Pfeifer, J. H., McNealy, K., Mazziotta, J. C.,
& Dapretto, M. (2009). Neural correlates of social exclusion during adolescence:
Understanding the distress of peer rejection. Social Cognitive and Affective
Neuroscience, 4(2), 143–157. https://doi.org/10.1093/scan/nsp007
Matson, J., & Neal, D. (2012). History and overview. In J. Matson (Ed.), Applied Behaviour
Analysis for Children with Autism Spectrum Disorders (pp. 1–15). Springer.
Mazurek, M., & Kanne, S. (2010). Friendship and internalizing symptoms among children and
adolescents with ASD. Journal of Autism and Developmental Disorders, 40, 1512–
1520. https://doi.org/10.1007/s10803-010-1014-y
Mayoh, J., & Onwuegbuzie, A. J. (2015). Toward a conceptualization of mixed methods
phenomenological research. Journal of Mixed Methods Research, 9(1), 91–
107. https://doi.org/10.1177/1558689813505358
McAllister, K., & Maguire, B. (2012). Design considerations for the autism spectrum disorder-
friendly Key Stage 1 classroom. Support for Learning, 27(3), 103–
112. https://doi.org/10.1111/j.1467-9604.2012.01525.x
McCoyd, J. L. M., & Kerson, T. S. (2006). Conducting Intensive Interviews Using Email: A
Serendipitous Comparative Opportunity. Qualitative Social Work: Research and
Practice, 5(3), 389–406. https://doi.org/10.1177/1473325006067367 159
McCrimmon, A. (2015). Inclusive Education in Canada. [SAGE Publications Ltd.]. Intervention
in School and Clinic, 50(4), 234–237. https://doi.org/10.1177/1053451214546402
McDonald, K., Kidney, C., & Patka, M. (2013). You need to let your voice be heard’: Research
participant’s views on research. Journal of Intellectual Disability Research, 57(3), 216–
225. https://doi.org/10.1111/j.1365-2788.2011.01527.x
Meekosha, H., & Shuttleworth, R. (2009). What’s so ‘critical’ about critical disability
studies? Australian Journal of Human Rights, 15(1), 47–
75. https://doi.org/10.1080/1323238X.2009.11910861
McNiff, J. (2013). Action research (3rd ed.). Routledge. https://doi.org/10.4324/9780203112755
McVittie, E. (2005). The role of the teaching assistant: An investigative study to discover if
teaching assistants are being used effectively to support children with special educational
needs in mainstream schools. Education, 3(13), 26–31.
Mehling, M. H., & Tasse, M. J. (2015). Impact of choice on social outcomes of adults with
ASD. Journal of Autism and Developmental Disorders, 45, 1588–
1602. https://doi.org/10.1007/s10803-014-2312-6
Merriam, S. B., & Tisdell, E. J. (2016). Qualitative research: A guide to design and
implementation (4th ed.). Jossey-Bass.
Merriam-Webster. (n.d.). Aut-. In Merriam-Webster.com dictionary. https://www.merriam-
webster.com/dictionary/aut-
Mesibov, G. B., & Shea, V. (2011). Evidence-based practices and Autism. Autism, 15(1), 114–
133. https://doi.org/10.1177/1362361309348070 160
Messiou, K. (2006). Understanding marginalisation in education: The voice of
children. European Journal of Psychology of Education, 21(3), 305–
318. https://doi.org/10.1007/BF03173418
Messiou, K. (2019). The missing voices: Students as a catalyst for promoting inclusive
education. International Journal of Inclusive Education, 23(7-8), 768–
781. https://doi.org/10.1080/13603116.2019.1623326
Meyer, A., Gordon., D. & Rose, D. (2014). Universal Design for Learning: Theory and Practice.
CAST Publishing.
Michael, S. R. 2002. Cross tabulation & Chi-square
[online]. http://www.indiana.edu/~educy520/sec5982/week_12/chi_sq_summary011020.pd
f
Michalko, R. (1999). The Two-in-One: Walking with Smokie, Walking with Blindness. Temple
University Press.
Milton, D. E. M. (2012). On the ontological status of autism: The “double empathy
problem.”. Disability & Society, 27(6), 883–
887. https://doi.org/10.1080/09687599.2012.710008
Miner-Romanoff, K. (2012). Interpretive and critical phenomenological crie studies: A modern
design. Qualitative Report, 17(54), 1–32.
Mirenda, P., Wilk, D., & Carson, P. (2000). A Retrospective analysis of technology use patterns
of students with Autism over a five-year period. Journal of Special Education
Technology, 15(3), 5–16. https://doi.org/10.1177/016264340001500301
Mitchell, D. (2014). What really works in special and inclusive education: Using evidence-based
teaching strategies. 2nded. Routledge. https://doi.org/10.4324/9780203105313 161
Mitchell, D., & Sutherland, D. (2020). What Really Works in Special and Inclusive
Education. What Really Works in Special and Inclusive Education (3rd ed.).
Routledge. https://doi.org/10.4324/9780429401923
Mitchell, D. (2017). Almost everything I'd been told about my son’s autism was wrong. New
Statesman America.https://www.newstatesman.com/culture/books/2017/07/david-mitchell-
almost-everything-i-d-been-told-about-my-son-s-autism-was-wrong
Mladenov, T. (2016). Disability and social justice. Disability & Society, 31(9), 1226–
1241. https://doi.org/10.1080/09687599.2016.1256273
Montee, B., Miltenberger, R., & Wittrock, D. (1995). An experimental analysis of facilitated
communication. Journal of Applied Behavior Analysis, 28(2), 189–
200. https://doi.org/10.1901/jaba.1995.28-189
Morse, J. (2017). Reframing rigor in qualitative inquiry. In N.K. Denzin & Y.S. Lincoln
(Eds.), The Sage handbook of qualitative research (5th ed.). (pp, 796-817). Thousand Oaks
Murray, S. (2012). Autism. Routledge. https://doi.org/10.4324/9780203805992
National Autistic Society Northern Ireland. (2012). A is for autism: Make every school a good
school. NAS. file:///Users/chandralebenhagen/Downloads/A-for-Autism-campaign-report-
FINAL.pdf
National Institute of Drug Abuse. (January, 2016). What are
hallucinogens?https://web.archive.org/web/20160417180046/https:/wwwdrugabuse.gov/pu
blications/drugfacts/hallucinogens
Navon, D., & Eyal, G. (2016). Looping genomes: Diagnostic change and the genetic makeup of
the autism population 1. American Journal of Sociology, 121(5), 1416–
1471. https://doi.org/10.1086/684201 162
Neumärker, K. (2003). Leo Kanner : His years in Berlin, 1906 – 24. The roots of autistic
disorder. History of Psychiatry, 14(2), 205–
218. https://doi.org/10.1177/0957154X030142005
Nicolaidis, C., Raymaker, D., Ashkenazy, E., McDonald, K., Dern, S., Baggs, A. E. V., Kapp, S.
K., Weiner, M., & Boisclair, W. C. (2015). Respect the way I need to communicate with
you: Healthcare experiences of adults on the autism spectrum. Autism, 19(7), 824–831.
Advance online publication. https://doi.org/10.1177/1362361315576221
Nicolaidis, C., Raymaker, D., McDonald, K., Dern, S., Boisclair, C., Ashkenazy, E., & Baggs, A.
(2013). Comparison of healthcare experiences in autistic and non-autistic adults: A cross
sectional online survey facilitated by an academic-community partnership. Journal of
General Internal Medicine, 28(6), 761–769. https://doi.org/10.1007/s11606-012-2262-7
Nilholm, C., & Göransson, K. (2017). What is meant by inclusion? An analysis of European and
North American journal articles with high impact. European Journal of Special Needs
Education,32(3), 437–451. https://doi.org/10.1080/08856257.2017.1295638
Noble, T., & McGrath, H. (2014). Well-being and resilience in school settings. In G. A. Fava &
C. Ruini (Eds.), Increasing psychological well-being in clinical and educational settings:
Interventions and cultural contexts (pp. 135–152). Springer.
Noble, T., McGrath, H., Wyatt, T., Carbines, R., & Robb, L. (2008). Scoping study into
approaches to student wellbeing. Brisbane, Australia: Australian Catholic University and
Erebus International.
OECD. (2017). Students’sense of belonging at school and their relations with teachers, in PISA
2015 Results (Volume III): Students’Well-Being, OECD Publishing,
Paris. https://doi.org/10.1787/9789264273856-11-en 163
O’Hagan, S., & Hebron, J. (2017). Perceptions of friendship among adolescents with autism
spectrum conditions in a mainstream high school resource provision. European Journal of
Special Needs Education, 32(3), 314–328. https://doi.org/10.1080/08856257.2016.1223441
Ornoy, A., Weinstein-Fudim, L., & Ergaz, Z. (2015). Prenatal factors associated with autism
spectrum disorder (ASD). Reproductive Toxicology (Elmsford, N.Y.), 56, 155–169.
Advance online publication. https://doi.org/10.1016/j.reprotox.2015.05.007
Ospina, M., Krebs-Seida, J., Clark, B., Karkhaneh, M., Hartling, L., Tjosvold, L., Vandermeer,
B., & Smith, V. (2008). Behavioural and developmental interventions for autism spectrum
disorder: A clinical systematic review. PLoS One, 3, e3755. Advance online
publication. https://doi.org/10.1371/journal.pone.0003755
Palen, T. (2014). A Cyborg autobiography : Autism & the posthuman. Unpublished Manuscript.
Utrecht University,
Netherlands. http://www.academia.edu/14944639/A_Cyborg_Autobiography_Autism_and
_the_Posthuman
Palinkas, L., Horwitz, S., Green, C., Wisdom, J., Duan, N., & Hoagwood, K. (2015). Purposeful
sampling for qualitative data collection and analysis in mixed method implementation
research. Administration and Policy in Mental Health, 42(5), 533–
544. https://doi.org/10.1007/s10488-013-0528-y
Panorama Education. (2015). Validity brief: Panorama student
survey. https://go.panoramaed.com/hubfs/Panorama_January2019%20/Docs/validity-
brief.pdf
Parliament of Canada. (2019). Accessible Canada
Act. https://www.parl.ca/DocumentViewer/en/42-1/bill/C-81/royal-assent 164
Parsloe, S. (2015). Discourses of disability, narratives of community: Reclaiming an autistic
identity online. Journal of Applied Communication Research, 43(3), 336–
356. https://doi.org/10.1080/00909882.2015.1052829
Parsons, S. (2015). Why are we an ignored group? Mainstream educational experiences and
current life satisfaction of adults on the autism spectrum from an online
survey. International Journal of Inclusive Education, 19(4), 397–
421. https://doi.org/10.1080/13603116.2014.935814
Paterson, K., & Hughes, B. (1999). Disability Studies and Phenomenology: The carnal politics of
everyday life. Disability & Society, 14(5), 597–
610. https://doi.org/10.1080/09687599925966
Pellicano, E., Dinsmore, A., & Charman, T. (2014). What should autism research focus upon?
Community views and priorities from the United Kingdom. Autism, 18(7), 756–
770. https://doi.org/10.1177/1362361314529627
Person-Orientated Autism Research Ethics. (2019). Person-oriented research in the context of
Autism. https://www.autismresearchethics.net/about
Petrina, N., Carter, M., & Stephenson, J. (2014). The nature of friendship in children with autism
spectrum disorders: A systematic review. Research in Autism Spectrum Disorders,
8(2), https://doi.org/. 10.1016/j.rasd.2013.10.016
Petzet, H. W. (1993). Encounters and Dialogues with Martin Heidegger 1929-1976. University
of Chicago Press.
Pitt, A., & Britzman, D. (2003). Speculations on qualities of difficult knowledge in teaching and
learning: An experiment in psychoanalytic research. International Journal of Qualitative 165
Studies in Education : QSE, 16(6), 755–
776. https://doi.org/10.1080/09518390310001632135
Plackett, R. (1983). Karl Pearson and the chi-squared test. International Statistical Review /
Revue Internationale De Statistique, 51(1), 59-72. https://doi.org/10.2307/1402731
Plater, R. (2020, March 11). Groups cheer as the FDA bans use of electric shock devices used on
students. Healthline. https://www.healthline.com/health-news/fda-bans-use-of-electrical-
stimulation-devices-used-at-school
Pollack, R. (1997). The Creation of Dr. B: A biography of Bruno Bettelheim by Richard. Pollak.
Simon. & Schuster.
Polyak, A., Kubina, R. M., & Girirajan, S. (2015). Comorbidity of intellectual disability
confounds ascertainment of autism: Implications for genetic diagnosis. American Journal
of Medical Genetics. Part B, Neuropsychiatric Genetics, 168, 600–608. Advance online
publication. https://doi.org/10.1002/ajmg.b.32338
Poon, K. K., Soon, S., Wong, M. E., Kaur, S., Khaw, J., Ng, Z., & Tan, C. S. (2014, October 3).
What is school like? Perspectives of Singaporean youth with high-functioning autism
spectrum disorders. International Journal of Inclusive Education.
Routledge. https://doi.org/10.1080/13603116.2012.693401
Porter, G., & Towell, D. (2020, February 28). The journey to inclusive schooling, advancing
school transformation from within. Inclusive Education
Canada. https://inclusiveeducation.ca/wp-content/uploads/sites/3/2020/02/THE-
JOURNEY-TO-INCLUSIVE-SCHOOLING-_-final-1.pdf 166
Pragmatic Health Ethics Research Unit. (2019). Who are
we? http://www.pragmatichealthethics.ca/project/working-with-autism-advocates-to-
develop-best-practices-for-research/
Preece, D., & Jordan, R. (2010). Obtaining the views of children and young people with autism
spectrum disorders about their experience of daily life and social care support. British
Journal of Learning Disabilities, 38(1), 10–20. https://doi.org/10.1111/j.1468-
3156.2009.00548.x
Public Health Agency of Canada. (2018). Autism spectrum disorder among children and youth in
Canada in 2018. A report of the National Autism Spectrum Disorder Surveillance
System.https://www.canada.ca/en/public-health/services/publications/diseases-
conditions/infographic-autism-spectrum-disorder-children-youth-canada-2018.html
Qualtrics, 2020. Cross-tabulation analysis: A researcher’s
guide. https://www.qualtrics.com/experience-management/research/cross-tabulation/
Raymaker, D. M., Kapp, S. K., McDonald, K. E., Weiner, M., Ashkenazy, E., & Nicolaidis, C.
(2019). Development of the AASPIRE web accessibility guidelines for Autistic web
users. Autism in Adulthood: Challenges and Management, 1(2), 146–
157. https://doi.org/10.1089/aut.2018.0020
Rimland, B. (1964). Infantile autism: The syndrome and its implications for a neural theory of
behavior. Appleton-Century-Crofts.
Rimland, B. (1993). BEWARE THE ADVOZEALOTS: Mindless Good Intentions Injure the
Handicapped. Autism Research Review International, 7(3). https://sabrinajeffries.com/wp-
content/uploads/2012/06/beware-the-advozealots.pdf 167
Roberts, J., & Simpson, K. (2016). A review of research into stakeholder perspectives on
inclusion of students with autism in mainstream schools. International Journal of Inclusive
Education,20(10), 1084–1096. https://doi.org/10.1080/13603116.2016.1145267
Roberts, J., & Webster, A. (2020). Including students with autism in schools: a whole school
approach to improve outcomes for students with autism. International Journal of
Inclusive Education. https://www.tandfonline.com/doi/full/10.1080/13603116.2020.17126
22 https://doi.org/10.1080/13603116.2020.1712622
Robertson, K., Chamberlain, B., & Kasari, C. (2003). General education teachers’ relationships
with included students with autism. Journal of Autism and Developmental Disorders, 33,
123–130. https://doi.org/10.1023/A:1022979108096
Rosa, M., & Mountian, I. (2013). Psychoanalytic listening to socially excluded young
people. Cultura e Scuola, 18, 1–16. https://doi.org/10.1057/pcs.2012.2
Rotheram-Fuller, E., Kasari, C., Chamberlain, B., & Locke, J. (2010). Social involvement of
children with Autism Spectrum Disorders in elementary school classrooms. Journal of
Child Psychology and Psychiatry, and Allied Disciplines, 51(11), 1227–
1234. https://doi.org/10.1111/j.1469-7610.2010.02289.x
Saggers, B. (2015). Student perceptions: Improving the educational experiences of high school
students on the autism spectrum. Improving Schools, 18(1), 35–
45. https://doi.org/10.1177/1365480214566213
Saggers, B., Hwang, Y. S., & Mercer, K.L. (2011). Your voice counts: Listening to the voice of
high school students with autism spectrum disorder. Australasian Journal of Special
Education, 35(2), 173–190. https://doi.org/10.1375/ajse.35.2.173 168
Sallows, G., & Graupner, T. (2005). Intensive behavioral treatment for children with autism:
Four-year outcome and predictors. American Journal of Mental Retardation, 110(6), 417–
438. https://doi.org/10.1352/0895-8017(2005)110[417:IBTFCW]2.0.CO;2
Saloviita, T., Leppänen, M., & Ojalammi, U. (2014). Authorship in facilitated communication:
An analysis of 11 cases. Augmentative and Alternative Communication, 30, 213-225.
St. Pierre, J. (2015). Cripping communication: Speech, disability, and exclusion in liberal
humanist and posthumanist discourse. Communication Theory, 25(3), 330–
348. https://doi.org/10.1111/comt.12054
Saur, E., & Sidorkin, A. (2018). Disability, dialogue, and the posthuman. Studies in Philosophy
and Education, 37, 567–568. https://doi.org/10.1007/s11217-018-9616-5
Scheffer, E. (2018). Asperger’s children: The origins of Autism in Nazi Vienna. Norton &
Company.
Schon, D. A. (1987). Educating the reflective practitioner. Jossey-Bass.
The School of Public Policy. (2017, January). Laying the Foundation for policy: Measuring local
prevalence for autism spectrum disorder, 8(5), 2.
Schopler, E. & Reichler, R. (1971). Parents as co-therapists in the treatment of psychotic
children. Journal of Autism and Childhood Schizophrenia, 1(1), 87–
102. https://doi.org/10.1007/BF01537746
Sciutto, M., Richwine, S., Mentrikoski, J., & Niedzwiecki, M. (2012). A qualitative analysis of
the school experiences of students with Asperger Syndrome. Focus on Autism and Other
Developmental Disabilities, 27(3), 177–188. https://doi.org/10.1177/1088357612450511 169
Scott-Barrett, J., Cebula, K. & Florian, L. (2019). Listening to young people with autism:
learning from researcher experiences. International Journal of Research and Method in
Education, 1–22. Routledge. https://doi.org/10.1080/1743727X.2018.1462791
Screams, slaps and love: A surprising, shocking treatment helps far-gone mental cripples
(1965). Life. http://neurodiversity.com/library_screams_1965.html
Shakespeare, T. (2013). Disability rights and wrongs.
Routledge. https://doi.org/10.4324/9781315887456
Sigafoos, J., Green, V., Edrisinha, C., & Lancioni, G. (2007). Flashback to the 1960s: LSD in the
treatment of autism. Developmental Neurorehabilitation, 10(1), 75–
81. https://doi.org/10.1080/13638490601106277
Silbernan, S. (2015). Neurotribes. Allen & Unwin.
Sinclair, J. (1993). Don’t mourn for us. Our Voice,
1(3). http://www.autreat.com/dont_mourn.html
Sinclair, J. (2010). Cultural community: Being Autistic together. Disability Studies
Quarterly, 30(1). http://dsq-
sds.org/article/view/1075/1248 https://doi.org/10.18061/dsq.v30i1.1075
Sinclair, J. (2012). Autism Network International: The development of a community and its
culture. In J. Bascom (Ed.), Loud Hands: Autistic People Speaking (pp. 22–70). The
Autistic Press.
Smith, N. A., Sabat, I. E., Martinez, L. R., Weaver, K., & Xu, S. (2015, June 1). A convenient
solution: Using MTurk to sample from hard-to-reach populations. Industrial and
Organizational Psychology. Cambridge University
Press. https://doi.org/10.1017/iop.2015.29 170
Socially Anxious Advocate. (2015). Why I left
ABA. https://sociallyanxiousadvocate.wordpress.com/2015/05/22/why-i-left-aba/ Stuart, M.
(2016). Routledge.
Solomon, M., Buaminger, N., & Rogers, S. J. (2011). Abstract reasoning and friendship in high
functioning preadolescents with autism spectrum disorders. Journal of Autism and
Developmental Disorders, 41(1), 32–43. https://doi.org/10.1007/s10803-010-1017-8
Solomon, O., & Lawlor, M. C. (2018). Beyond V40.31: Narrative phenomenology of wandering
in autism and dementia. Culture, Medicine and Psychiatry, 42(2), 206–
243. https://doi.org/10.1007/s11013-017-9562-7
Sparrow, M. (2017, November 13). Coping with a crisis when you have un- reliable or
intermittent speech. Thinking Persons Guide to
Autism. http://www.thinkingautismguide.com/2017/11/coping-with-crisis-when-you-
have.html
Sparrow, M. (2020, March 19). Autistic in the pandemic: A call to action. Thinking Person’s
Guide to Autism. http://www.thinkingautismguide.com/2020/03/autistic-in-pandemic-call-
to-action.htm
Spivak, G. C. (1988). Can the subaltern speak? In C. Nelson & L. Grossberg (Eds.). Marxism
and the interpretation of culture (pp.271-313). Macmillan
Education https://doi.org/10.1007/978-1-349-19059-1_20
Staniszewska, S., Mockford, C., Gibson, A., Herron-Marx, S., & Putz, R. (2011). Moving
forward: Understanding the negative experiences and impacts of patient involvement in
health service planning development and evaluation. In M. Barnes & P. Cotterell (Eds.), 171
Critical Perspectives on User Involvement (pp. 129–141). The Policy
Press. https://doi.org/10.2307/j.ctt9qgshb.17
Steward, R., Crane, L., Mairi Roy, E., Remington, A., & Pellicano, E. (2018). Life is much more
difficult to manage during periods: Autistic experiences of menstruation. Journal of Autism
and Developmental Disorders, 48(12), 4287–4292. https://doi.org/10.1007/s10803-018-
3664-0
Stop Ableism. (2019). What is ableism? http://www.stopableism.org/p/what-is-ableism.html
Sullivan, G. M., & Artino, A. R., Jr. (2013). Analyzing and interpreting data From Likert-Type
Scales. Journal of Graduate Medical Education, 5(4), 541–
542. https://doi.org/10.4300/JGME-5-4-18
Sundberg, M. (2018). Online gaming, loneliness and friendships among adolescents and adults
with ASD. Computers in Human Behavior, 79, 105–
110. https://doi.org/10.1016/j.chb.2017.10.020
Sweileh, W., Al-Jabi, S., Sawalha, A., & Zyoud, S. (2016). Bibliometric profile of the global
scientific research on autism spectrum disorders. SpringerPlus, 5(1),
1480. https://doi.org/10.1186/s40064-016-3165-6
Swinton, J., & Trevett, C. (2009). Religion and autism: Initiating an interdisciplinary
conversation. Journal of Religion Disability & Health, 13(1), 2–
6. https://doi.org/10.1080/15228960802606193
Symes, W., & Humphrey, N. (2010). Peer-group indicators of social inclusion among pupils with
autistic spectrum disorders (ASD) in mainstream secondary schools: A comparative
study. School Psychology International, 31(5), 478–
494. https://doi.org/10.1177/0143034310382496 172
Tager-Flusberg, H., & Kasari, C. (2013, December). Minimally verbal school-aged children with
autism spectrum disorder: The neglected end of the spectrum. Autism Research, 6, 468–
478. Advance online publication. https://doi.org/10.1002/aur.1329
Taheri, A., Perry, A., & Minnes, P. (2016). Examining the social participation of children and
adolescents with Intellectual Disabilities and Autism Spectrum Disorder in relation to
peers. Journal of Intellectual Disability Research, 60(5), 435–
443. https://doi.org/10.1111/jir.12289
Tangen, R. (2005). Promoting inclusive education in secondary school in Norway: A national
programme for teacher development. European Journal of Special Needs Education, 20(1),
57–70. https://doi.org/10.1080/0885625042000319089
Tavakol, M. & Dennick, R. (2011). Making sense of Cronbach’s alpha. International Journal of
Medical Education. 2, 53-55. doi.10.5116/ijme.4dfb.8dfd
Tavassoli, T., Miller, L., Schoen, S., Nielsen, D., & Baron-Cohen, S. (2014). Sensory over-
responsivity in adults with autism spectrum conditions. Autism, 18(4), 428–
432. https://doi.org/10.1177/1362361313477246
Taylor, A. (2015). Using interpretative phenomenological analysis in a mixed methods research
design to explore music in the lives of mature age amateur keyboard players. Music
Education Research, 17(4), 437–452. https://doi.org/10.1080/14613808.2014.906397
Taylor, C. (1992). The politics of recognition. In C. Taylor & A. Gutmann (Eds.), Multi-
Culturalism and ‘The Politics of Recognition’. Princeton University Press.
Thompson, S. A., Lyons, W., & Timmons, V. (2015). Inclusive education policy: What the
leadership of Canadian teacher associations has to say about it. International Journal of
Inclusive Education, 19(2), 121–140. https://doi.org/10.1080/13603116.2014.908964 173
Time Magazine. (1948). Medicine: Frosted
children. http://autismedsp5310s20f10.pbworks.com/f/Time-
Medicine_+Frosted+Children+--+Printout.pdf
Tisdall, E. (2012). The challenge and challenging of childhood studies? Learning from disability
studies and research with disabled children. Children & Society, 26(3), 181–
191. https://doi.org/10.1111/j.1099-0860.2012.00431.x
Todd, S. (2003). Listening as an attentiveness to ‘dense plots. In Learning From the Other:
Levinas, Psychoanalysis, and Ethical Possibilities in Education (pp. 117–140). SUNY
Press.
Tosta, L. (2001). Laugh and Learn: Thinking over the “Funny Teacher” Myth. Teaching
Forum. 39(2). https://books.google.ca/books?id=h4YFiSrfE3kC&pg=PA26&dq=Thinking
+over+the+”Funny+Teacher”+Myth.+Teaching+Forum.&hl=en&sa=X&ved=0ahUKEwi
W1IeGjPXoAhUsCTQIHcefBxIQ6AEIKDAA#v=onepage&q=Thinking%20over%20the
%20”Funny%20Teacher”%20Myth.%20Teaching%20Forum.&f=false
Towle, H. (2015). Disability and inclusion in Canadian education: Policy, procedure and
practice. Canadian Centre for Policy Alternatives. National Office.
Tremain, S. (Ed.). (2015). Foucault and the Government of Disability. University of Michigan
Press. https://doi.org/10.3998/mpub.8265343
Trevett, C. (2009). Asperger’s Syndrome and the holy fool: The case of Brother Juniper. Journal
of Religion Disability & Health, 13(2), 129–
150. https://doi.org/10.1080/15228960802581537 174
UNESCO. (1994). The Salamanca Statement and Framework for Action on Special Needs
Education. Adopted by the World Conference on Special Needs Education: Access and
Quality. Salamanca, Spain, 7-10 June. U.
United Nations. (1989). Convention on the rights of the child, office of the high commissioner.
United Nations.
United Nations. (2006). Convention on the rights of persons with
disabilities. http://www.refworld.org/docid/4680cd212.html
Vanerheiden, G. (2002). A journey through early augmentative communication and computer
access. Journal of Rehabilitation Research and Development, 39(6), 39–53.
Vasa, R. A., & Mazurek, M. O. (2015, March 6). An update on anxiety in youth with autism
spectrum disorders. Current Opinion in Psychiatry. Lippincott Williams
and Wilkins. https://doi.org/10.1097/YCO.0000000000000133
Verhoeff, B. (2013). Autism in flux: A history of the concept from Leo Kanner to DSM-
5. History of Psychiatry, 24(4), 442–458. https://doi.org/10.1177/0957154X13500584
Vincent, J., Potts, M., Fletcher, D., Hodges, S., Howells, J., Mitchell, A., Mallon, B., & Ledger,
T. (2017). ‘I think autism is like running on Windows while everyone else is a Mac’: Using
a participatory action research approach with students on the autistic spectrum to
rearticulate autism and the lived experience of university. Educational Action
Research, 25(2), 300–315. https://doi.org/10.1080/09650792.2016.1153978
Volkmar, F. R., Reichow, B., & McPartland, J. (2012). Classification of autism and related
conditions: Progress, challenges, and opportunities. Dialogues in Clinical
Neuroscience, 14(3), 229–237. 175 von Woerkom, A. (2015). In A. Sequenzia & E. J. Grace (Eds.), Typed words, loud voices (pp.
30–31). Autonomous Press.
Waltz, M. (2005). Reading case studies of people with autistic spectrum disorders: A cultural
studies approach to issues of disability representation. Disability & Society, 20, 421–435.
Advance online publication. https://doi.org/10.1080/09687590500086575
Warren, J. (2007). Service user and carer participation in social work. Learning Matters Ltd.
Waterhouse, L., London, E., & Gillberg, C. (2016). ASD validity. Journal of Autism and
Developmental Disorders, 3, 302–329. https://doi.org/10.1007/s40489-016-0085-x
Weiss, J., & Delmolino, L. (2006). The relationship between early learning rates and treatment
outcome for children with autism receiving intensive home-based applied behaviour
analysis. The Behavior Analyst Today, 7(1), 96–110. https://doi.org/10.1037/h0100140
Williams, E. I., Gleeson, K., & Jones, B. E. (2019, January 1). How pupils on the autism
spectrum make sense of themselves in the context of their experiences in a mainstream
school setting: A qualitative meta synthesis. Autism. SAGE Publications
Ltd. https://doi.org/10.1177/1362361317723836
Williams, J., & Hanke, D. (2007). Do you want to know what sort of school I want? Optimum
features of school provision for pupils with Autistic Spectrum Disorder. Good Autism
Practice, 2(2), 51–63.
Williamson, S., Craig, J., & Slinger, R. (2008). Exploring the relationship between measures of
self-esteem and psychological adjustment among adolescents
with asperger syndrome. Autism, 12(4), 391–
402. https://doi.org/10.1177/1362361308091652
Wing, L. (1971). Autistic children: A guide for parents. Constable. 176
Wing, L. (1981). Asperger’s syndrome: A clinical account. Psychological Medicine, 11(1), 115–
129. https://doi.org/10.1017/S0033291700053332
Wing, L. (1997). The history of ideas on Autism: Legends, myths and reality. Autism, 1(1), 13–
23. https://doi.org/10.1177/1362361397011004
Wing, L., & Gould, J. (1979). Severe impairments of social interaction and associated
abnormalities in children: Epidemiology and classification. Journal of Autism and
Developmental Disorders, 9, 11–29. https://doi.org/10.1007/BF01531288
Wong, C., Odem, S., Hume, K., Cox, A., Fettig, A., Kucharzyk, S…Schultz, T.
(2013). Evidence-based practices for children, youth, and young adults with Autism
Spectrum Disorder. The University of North Carolina, Frank Porter Graham Child
Development Institute, Autism Evidence-Based Practice Review Group.
Worktopia (2020). Worktopia: School Works Canada. https://worktopia.ca
Wood, A. (2016). Temple Grandin: Voice for the voiceless. Skyhorse Publishing.
Woodfield, C., & Ashby, C. (2016). “The right path of equality”: Supporting high school
students with autism who type to communicate. International Journal of Inclusive
Education, 20(4), 435–454. https://doi.org/10.1080/13603116.2015.1088581
Wurtzburg, S., & Campbell, L. (1995). North American Indian sign language: Evidence of its
existence before European contact. International Journal of American Linguistics, 61(2),
153–167. https://doi.org/10.1086/466249
Yergeau, M. (2013). Clinically significant disturbance: On theorists who theorize theory of
mind. Disability Studies Quarterly, 33(4). https://doi.org/10.18061/dsq.v33i4.3876 177
Zager, D., Wehmeyer, M., & Simpson, R. (2012). Educating students with autism spectrum
disorders: Research-based principles and practices. Intervention in School and
Clinic, 50(4), 234–237.
Zeedyk, S., Rodriguez, G., Tipton, L. A., Baker, B. L., & Blacher, J. (2014). Bullying of youth
with autism spectrum disorder, intellectual disability, or typical development: Victim and
parent perspectives. Research in Autism Spectrum Disorders, 8(9), 1173–
1183. https://doi.org/10.1016/j.rasd.2014.06.001
Zeldovich, L. (2018). How history forgot the women who defined autism. Spectrum: Autism
Research News. https://www.spectrumnews.org/features/deep-dive/history-forgot-woman-
defined-autism/
Zeliadt, N. (2018). Revealing autism’s hidden strengths. Spectrum
News. https://www.spectrumnews.org/features/deep-dive/revealing-autisms-hidden-
strengths/
Zeni, J. (1998). A guide to ethical issues and action research. Educational Action Research, 6(1),
9–19. https://doi.org/10.1080/09650799800200053
Zisk, A. H., & Dalton, E. (2019). Augmentative and alternative communication for speaking
Autistic adults: Overview and recommendations. Autism in Adulthood: Challenges and
Management,1(2), 93–100. https://doi.org/10.1089/aut.2018.0007
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Appendix A: Timeline of European and Western Historical Perspectives
Researchers Parent-Researchers
1200-1700 • St. Francis of Assisi & Brother Juniper • Jean Marc Itard & Victor
1910 • Eugen Bleuler-autism “autos” for self
1938-1944 • Hans Asperger-high functioning autism • Leo Kanner-Infantile autism with psychobiological origins, including parental causation
1950’s • Bruno Bettelheim- “refrigerator mother ” • DSM-I: Autism as a subtype of schizophrenia
1960’s • Ivar Lovaas-Lovaas Method (ABA) • Bernard Rimland-Autism Society of • DSM-II: Autism as a subtype of America & Autism Research Institute schizophrenia • Ruth Sullivan-Autism Society of • Prevalence 4.5/10000 (1966) America & IDEA
1970’s • Lorna Wing-National Autistic Society (UK), introduced Asperger’s Syndrome • Eric Schopler- TEACCH 1980’s • Uta Frith-ToM, WCC • Simon Baron-Cohen-TofM, AQ to diagnose adults with autism • DSM-III: Infantile Autism 1990’s • Tony Attwood- Asperger’s Syndrome: A Guide for Parents and Professionals (1998) • Andrew Wakefield-MMR vaccine causing autism • DSM-IV: Asperger/ PDD added • Prevalence 15/10000
2000’s • Prevalence 1/150 (2007) • Prevalence 1/110 (2009) • Prevalence 1/88 (2012) • Prevalence 1/54 (2019)
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Appendix B: Research Pathway
•Critical disabilities theoretical framework and a phenomenologically informed research lens. •Mixed method convergent parallel design to collect quantitative and qualitative student perception data using sychronous and asychronous methods. Research Design
•Snowball sampling through provincial and territory autism organizations, including their social media platforms (Twitter, Facebook); Convience Sampling using Amazon’s MTurk. •Introductory email sent with a sharable infographic provided with a direct link to survey and consent information. •Canadian residents, minimum of 1 year of high school, 15-21 yrs, ASC, AS, PDD-NOS Recruitment •If consent is not given and/or eligibility criteria is not met in the 5 demographic questions, survey ends.
•Participants considered mature minors, possessing the decision-making capacity to consent or decline participation in the study. •Participant information documents about the research, particpation, risk, confidentiality and consent available for download. Parent information about the study also available. Consent & •Ascent collected at the beginning of the survey and before/during the email interview. Participants will be informed Ascent that they can take breaks or end participation at any time prior to final submission of both the survey and interview portion of the study.
•QUAN (n=72)-Asychronous survey open for 12 weeks using Qualtrics. Survey included 6 demographic questions; 18 Likert scale questions to collect student perception data based on 6 education themes; and 1 open-ended question should the participant want to share additional information related to their school experiences. Data •QUAL (n=10): Participants voluntarily provided email address to participate in a 30-minute synchronous semi- Collection structured email interview.
•QUAN-descriptive statistical analysis reporting on the mean and SD of student responses related to the above 6 themes. •QUAL -Inductive thematic anaylisis occuring in 4 stages: 1. Comparing incidents, 2. Combining categories, 3. Defining Data theory, and 4. Writing theory. •Data Integration: QUAN and QUAL data sets were integrated using the Pillar of Integration Process (PIP) and thus were Analysis used to answer the research question.
•Credibility through triangulation (survey data, interview data, previous research). •Transferability by comparing QUAN and QUAL data to previous research on the self-reported school experiences of autistic students. •Confirmability achieved by providing an audit trail of data collection, analysis and interpretation of the data. Data Verification •Dependability of data collection achieved by sharing the processes of data collection, analysis, and results with an external autistic researcher and interested autism agencies.
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Appendix C: Online Survey
Link to Qualtrics: https://survey.ucalgary.ca/jfe/form/SV_eVR24FIfRTD6rpr
*The formatting of the below PDF copy of Survey is set by Qualtrics.
Directions
Welcome to the study titled: What are the self-reported high school experiences of speaking and non-speaking autistic students in Canada?
Before the survey begins, you will need to read about the study to give informed consent to participate.
Parent Information
Participant Information
Now that you have carefully read the information on providing consent, please answer the following. If you have further questions, please email: [email protected].
I have read and understand the participant information booklet. I understand the benefits and risks involved in being part of this study. I understand that I have the right to withdraw from this study at any time prior to final submission of the survey. I agree that once I submit my answers the information I provide can be used for research purposes. Yes, I consent to participating in this study. No, I do not wish to participate in this study.
There are a total of 25 questions.
Please answer questions as best you can.
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If you feel tired you can take as many breaks as you like.
Introduction
I identify with the following:
Autism Spectrum Condition Asperger’s Syndrome Pervasive Developmental Disorder I prefer not to answer
I prefer to communicate by:
Speaking Typing Other
I identify as being:
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Female Male You don’t have an option that applies to me. I identify as:
I prefer not to answer
I am between the age of 16 and 21 and have completed grade:
The province or territory I live in is:
British Columbia Alberta Saskatchewan Manitoba Ontario Quebec New Brunswick Nova Scotia Prince Edward Island
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Newfoundland and Labrador Nunavut Northwest Territories Yukon I live outside of Canada
Pedagogical Effectiveness
How often do you receive feedback at school?
Almost never Once in a while Often
Almost always I prefer not to answer
Pedagogical Effectiveness
How comfortable are you asking questions?
Not comfortable Slightly comfortable Somewhat comfortable Quite comfortable Extremely comfortable I prefer not to answer
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Pedagogical Effectiveness
How interesting is school?
Not at all interesting Slightly interesting Mostly interesting Very interesting I prefer not to answer
School Climate
How fair or unfair are the rules at school?
Very unfair Slightly unfair Neither fair or unfair Slightly fair Very fair I prefer not to answer
School Climate
How pleasant or unpleasant is the physical space at your school?
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Very unpleasant Somewhat unpleasant Neither pleasant or unpleasant Somewhat pleasant Very pleasant I prefer not to answer
School Climate
How positive or negative is the energy at school?
Very negative Somewhat negative Neither negative or positive Somewhat positive Very positive I prefer not to answer
School Engagement
How excited are you to go to school?
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Not excited Slightly excited Quite excited Extremely excited I prefer not to answer
School Engagement
How eager are you to participate in your classes?
Not at all eager Slightly eager Quite eager Extremely eager I prefer not to answer
School Engagement
How often do your teachers take time to ensure you understand the material?
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Almost never Once in awhile Frequently Almost always I prefer not to answer
School Engagement
Overall, how high are your teachers' expectations of you?
Not very high Somewhat high Quite high Extremely high I prefer not to answer
Student-Teacher Relationships
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How many of your teachers are respectful towards you?
None of my teachers Some of my teachers Most of my teachers All of my teachers I prefer not to answer
Student-Teacher Relationships
How much do your teachers encourage you to do your best?
Almost never Once in awhile Frequently Almost always I prefer not to answer
Student-Teacher Relationships
How many of your teachers would you be excited to see again in the future?
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None of my teachers Some of my teachers Most of my teachers All of my teachers I prefer not to answer
School Belonging
How well do peers at your school understand you as a person?
Do not understand me Understand me a little Understand me quite a bit Completely understand me I prefer not to answer
School Belonging
How much respect do peers in your school show you?
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No respect A little respect Quite a bit of respect A lot of respect I prefer not to answer
School Belonging
Overall, how much do you feel like you belong at your school?
Do not belong Belong a little Belong quite a bit Completely belong I prefer not to answer
School Safety
How often do you worry about bullying at school?
Almost never
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Once in awhile Frequently Almost always I prefer not to answer
School Safety
How often do you worry about online bullying?
Almost never Once in awhile Frequently Almost always I prefer not to answer
Comments
Is there anything else you would like to share about your experiences at school?
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Yes, I would like to share the following:
Yes, I would be interested in participating in a short online interview. This interview is completely voluntary and will be confidential. My email contact is:
No, I do not want to participate in a follow-up interview.
Supports
Did you receive support in order to complete this survey?
Yes No
Draw
Thank-you for your participation! If you are interested in entering your email to enter a draw for a $50 Amazon Gift Card, please provide your email address below. This is completely voluntary and will be kept confidential.
Yes, my email contact is:
No thank-you
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Appendix D: Semi-Structured Email Interview Questions
Survey Item Follow-up Interview Question 1. How often do you receive feedback at What type of teacher feedback is the most school? meaningful to you? 2. How comfortable are you asking What can teachers do to help you feel questions? comfortable when you need to ask them a question? 3. How interesting is school? What interests you the most at school? 4. How fair or unfair are the rules at What school rules do you think are fair and school? unfair? 5. How pleasant or unpleasant is the What school spaces are the most calming to physical space at your school? you? 6. How positive or negative is the energy Describe one improvement your school could at school? make in order to make if feel more positive? 7. How excited are you to go to school? If you could imagine a perfect school day, what would it be? 8. How eager are you to participate in What is your most preferred way to your classes? participate in class? 9. How often do your teachers take time What is your most preferred way to interact to ensure you understand the material? with teachers? 10. Overall, how high are your teachers’ Share an example of how you like to be expectations of you? challenged in school? 11. How many of your teachers are What can teachers do to make you feel respectful towards you? respected? 12. How much do your teachers How do you like to be encouraged to do your encourage you to do your best? best at school? 13. How many of your teachers would In your opinion, what are the characteristics you be excited to see again in the of a great teacher? future? 14. How well do peers at your school What type of activities do you like to do with understand you as a person? peers at school? 15. How much respect do peers in your Describe a time where you felt a peer at school show you? school showed you respect. 16. Overall, how much do you feel like What makes you feel like you are part of a you belong at your school? school community? 17. How often do you worry about Due to the potentially sensitive nature of these bullying at school? 2 questions, no follow-up semi-structured 18. How often do you worry about online interview questions will be asked relating to bullying? the topic of bullying.
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Appendix E: Introduction Letter
Date:
Dear X:
My name is Chandra Lebenhagen and I am a doctoral student at the University of Calgary. I am requesting your assistance in sharing information regarding an online titled:
What are the self-reported school experiences of speaking and non-speaking high school students in Canada?
Summary of the Research: This study seeks to explore the self-reported inclusive educational experiences of speaking and non-speaking autistic high school students in Canada. As such, this research will fill a gap in research and understanding on the self-reported experiences of autistic youth in Canadian schools and will help to inform inclusive education policy and practice in school jurisdictions. Autistic students will have the opportunity to share their unique perspectives through the use of an online survey, and if they wish, participate in an email interview. The online design of the research provides flexible opportunities for autistic participants to receive and share information.
Researchers: Gabriela Alonso-Yanez (Supervisor) Chandra Lebenhagen (Student)
Who Can Participate? Eligible participants must: • Self-report having a diagnosis of Autism Spectrum Condition, Asperger’s Syndrome or Pervasive Developmental Disorder-Not Otherwise Specified. • Are between the ages of 15 and 21 years old. • Have completed at least one year of high school in an inclusive setting in Canada. • Speaking or non-speaking and have access to technology including a smartphone, tablet or a computer and the internet.
What’s Involved? • Participants will be asked to answer 24 survey questions and 1-open ended response. • Following completion of the survey, participants will be invited to voluntarily provide their email address should they be interested in participating in a semi-structured email interview which will be based on their survey responses. • Participants will be able to receive personalized support to answer the questions and can respond to questions at a time that is most convenient to them. • Anticipated time to complete the survey is 10-15 minutes and 30 minutes for the interview. • Participation in the survey and follow-up interview is completely optional. Participants may decline to answer any questions that they do not feel comfortable answering and can end participation in the study at any time prior to final submission. • Participants’ choice to participate in the research or not, will not affect the services they get from any of the agencies which are doing the recruitment.
How will participants be compensated for their participation? Participants can voluntarily provide their email to enter to win a $50 Amazon Gift Card. 195
What’s the deadline to participate? Survey will be open until November 30, 2019
Contact Information: [email protected]
Ethics Approval Number: The University of Calgary Conjoint Faculties Research Ethics Board has approved this study (REB19-0185)
Below you will find a direct link to the study, that can be shared with autistic students in your community. At the beginning of the survey there are resources for students and parents that includes detailed information about me, the study, eligibility and participation requirements.
Education Experiences of Autistic High School Students in Canada
https://survey.ucalgary.ca/jfe/form/SV_eVR24FIfRTD6rpr The University of Calgary Conjoint Faculties Research Ethics Board has approved this study REB19-0185
Should you require further information or wish to speak to me personally, please feel free to contact me at any of the following:
Name of Researcher: Chandra Lebenhagen Faculty Department: Werklund School of Education, University of Calgary Email: [email protected] Sponsor: None
Kind Regards,
Chandra Lebenhagen
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Appendix F: Parent Information
Dear Parent/Guardian:
My name is Chandra Lebenhagen and I am a doctoral student at the University of Calgary. I am conducting research that aims to gather information on the self-reported experiences of Canadian students attending high school in inclusive settings. Below you will find brief information on my background and connection to the research, the importance of the research, participation requirements, and benefits and risks to participation. Should you require further information or wish to speak to me personally, please feel free to contact me at any of the following:
Name of Researcher: Chandra Lebenhagen Faculty Department: Werklund School of Education, University of Calgary Telephone & Email: 403-703-4159 / [email protected] Study Title: What are the self-reported school experiences of speaking and non-speaking autistic high school students in Canada? Sponsor: None Approval: The University of Calgary Conjoint Faculties Research Ethics Board has approved this study (REB19-0185).
Personal and Professional Connection to the Research: For twenty years I have personal and professional connections to autistic individuals, their families and the study of ethical best practices. I have personal family connections as well as long standing relationships with former students and their families. Professionally, I have been a special education educator in both private and public education settings, specifically supporting autistic students from 3-21 years of age. Conducting research that centers on the personal voices and experiences of autistic students is important to me personally and as a committed educator and autism ally.
Background Information for the Study: • While the inclusion of autistic voice in research is improving, insufficient research exists that includes the self-reported experiences and perspectives of autistic individuals. • This study seeks to explore the self-reported inclusive educational experiences of autistic high school students in a Canadian context.
Why is this research important? • To increase understanding of autistic students’ high school experiences. • To provide opportunity for speaking and non-speaking autistic individuals to share their experiences and knowledge.
Who can join this study? • Students who self-reports as having a diagnosis of Autism Spectrum Disorder, Asperger’s Syndrome or PDD-NOS. • Students between the ages of 15 and 21 years old. • Students who have completed at least one year of high school in an inclusive setting in Canada. • Participants may be speaking or non-speaking and must have access to technology including a computer, tablet or smartphone and the internet
What will happen during the study? • Participants will be asked to answer 24 survey questions and 1-open ended response. 197
• Following completion of the survey, participants will be invited to voluntarily provide their email address, should they be interested in participating in a semi-structured email interview, which will be based on their survey responses. • Participants will be able to receive personalized support to answer the questions and can respond to questions at a time that is most convenient to them. • Anticipated time to complete the survey is 10-15 minutes and 30- minutes for the open-ended questions. • Participation in the survey and email questions is completely optional. Participants may decline to answer any questions that they do not feel comfortable answering and can end participation in the study at any time prior to final submission. • Participants may voluntarily provide their email address to enter a draw for a voluntary $50 Amazon Gift Card.
What are the benefits of this study? • This research will provide opportunity for autistic students to self-report their school experiences. • Results of this research will: o Give opportunity for autistic students to share their authentic experiences. o Help inform best practice for educators, researchers, and policy makers.
What are the risks of this study? • Some questions may be upsetting. Your child can decline to answer any of the questions they do not feel comfortable answering. If your child feels upset resources will be provided at the end of the survey. • This study will have no bearing on your child’s relationship with their school or teachers. • Participants’ choice to participate in the research or not, will not affect the services they get from any of the agencies which are doing the recruitment. • Your child may feel tired after answering questions. • If your child feels extremely upset, please contact Crisis Text Line at: https://www.crisistextline.org.
Will privacy be protected? • Research data collected for the survey portion will not include any identifying information such as your child’s name, date of birth, address or school. • If your child decided that they are interested in answering 2-follow-up email questions, they will be required to share their email address. Email addresses and any identifying information will be anonymized. • Survey responses and email responses will be stored on secure, password-protected servers at the University of Calgary. Only researchers at the University of Calgary will have access to the survey responses. • All data will be kept for five years following initial publication of the results and then be destroyed. Any future use of this research data is required to undergo review by a Research Ethics Board. • Research findings may be published and/or presented at conferences.
Can I withdraw from the study? • Participants are free to exit the survey and email portion of the research any time prior to final submission. If a participant chooses not to respond to the email questions after providing their email contact, their email will be destroyed within 1-month of the survey closing.
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Consent to Participate in the Study: • Participants who want to participate in the study will select the boxes that indicate that they have read and understand the information provided in the participant consent booklet. The survey will close for participants who do not consent.
Questions/Concerns If you or your child have questions or concerns, at any time prior, during or after the study please contact: Chandra Lebenhagen at: [email protected]
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Appendix G: Student Information Booklet
Information for Student Participants
Thank-you for your interest in participating in research! In a question and answer format, you will find information about this research study that will help you decide if you would like to join! After reading this booklet, you will able to return to the online survey to tell us if you would like to join the study.
Research Question:
What are the self-reported school experiences of autistic high school students in Canada?
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What is research?
Research is a way to learn more about certain topics and human experiences. There are many types of research, including experimental research that may be done in a lab or participatory research that includes views and ideas from everyday people.
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What new information is this study looking for?
This research is looking to learn about the inclusive education experiences from the perspective of speaking and non-speaking autistic high school students in Canada.
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Who is the researcher?
My name is Chandra Lebenhagen and I live in Calgary, Alberta with my family and dog named Theodore. I am a teacher, but mostly work as a learning specialist where I work with other educators to improve educational experiences for autistic students. I have personal and working relationships with autistic individuals for over 20 years.
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Why am I interested in learning about your school experiences?
Listening to and learning from autistic student’s perspectives on their school experiences is important. It helps educators and students work as a team to better understand what works well and what areas need to be improved.
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Why is this research important?
1. Autistic student voice is important, whether you are speaking or non-speaking! 2. Your perspectives need to be included in discussions about schooling! 3. There is little research that includes the perspectives of Canadian high school students that are autistic!
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Who can join this study?
1. You have a diagnosis of autism, Asperger’s, or PDD-NOS. 2. Are between 15 and 21 years old. 3. Have completed at least one year of high school in an inclusive setting in Canada. 4. Have access to a computer, tablet, or a smartphone and the internet.
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How do you join this study?
If you answer ‘yes’ to all of the criteria in the section “Who can join this study?” and understand the information provided in this booklet, you can give your consent to participate in this study at the beginning of the online survey. If you consent, the survey will begin. If you don’t consent, the survey will end.
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What will happen during the study?
1. You will be asked to answer 24 questions using a Likert Scale. Which means you “click” on the box that most closely answers the question that represents your experiences at school. 2. After you have completed the 24 questions, there is a space where you can provide additional information if you choose. 3. You will also be asked if you would like to participate in a follow-up 30-minute semi- structured email interview, which will be based on your survey responses. If you agree, you will voluntarily provide your email address to receive the questions. If you do not agree, the survey will end. Participants who chose to participate in the semi-structured email interview will receive a $25 Amazon e-Gift Card. 4. If you would like help completing the questions, you are able to ask for familiar support. This might mean someone reads the question to you, scribes your answer, or “clicks” the box for you.
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How long will it take to complete the questionnaire?
1. Everyone works at their own pace. Answering the survey questions may take between 10- 15 minutes and participating in the semi-structured email interview may take 30- minutes. 2. You are free to answer the questions at a time that works best for you. You may decide to take short or long breaks in between answering the questions.
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What are the risks to joining the study?
• Some questions may be upsetting. You can decline to answer any of the questions that you do not feel comfortable answering. If you feel upset, you can access resources provided at the end of the survey. • You will be able to respond to the questions in your own space, at your own time and with support if required. • Participation in this study is anonymous and will have no impact on your relationship with your school or teachers. • Participants’ choice to participate in the research or not, will not affect the services they get from any of the agencies which are doing the recruitment. • If you decide to participate in the semi-structured email interview, you will be required to provide your email address in order to participate. • You may feel tired or stress if you recall an unpleasant memory. However, please remember that you can take as many breaks as you like, not answer the question, or end your participation at any time. If you feel extremely upset, you can contact the Crisis Text Line at: https://www.crisistextline.org.
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