The purpose of this study is to identify novice teachers’ perception of their preparedness to teach a class designed for students with autism spectrum disorder (ASD) after graduation from a traditional university-based special education program or from a special education alternative certification program. Teacher preparedness and the need for highly qualified teachers of students with ASD are relevant topics, as the prevalence rate of ASD continues to increase. This phenomenological qualitative study explores novice teachers’ perceptions of preparedness to teach students with ASD and their knowledge about teaching students with ASD. Semi-structured, in-depth interviews were conducted with six novice special education teachers of students with ASD. Results indicated that novice teachers of students with ASD have knowledge of autism and evidence-based practices (EBP), which they ascertained primarily through experiences such as; working directly with students with ASD, however, preservice education programs provided the participants with cursory information related to knowledge of ASD and EBP.

Thesis advisor: Kristen Bottema-Beutel / Autism is often framed using a deficit lens with ableist beliefs and medical model perspectives promoting the curing, treatment, or camouflaging of autistic characteristics. This contributes to poor outcomes experienced by many within the autistic community, including but not limited to victimization at higher rates (Fisher & Lounds Taylor, 2016; Nansel et al., 2001), lower satisfaction with quality of life in work, education, and relationships (Barneveld et al., 2014), suicidal ideation at higher frequencies (Mayes et al., 2013), and low self-esteem and high depression and anxiety (Cooper et al., 2017). Increased efforts are necessary to better understand how to support positive autistic identity development. This dissertation is comprised of three papers outlined below, aimed at exploring autistic identity. Paper 1 sought to analyze how autistic adults without a formal autism diagnosis construct autistic identities in the narratives they tell about disclosure or talking to other about being autistic. Through interviewing using participant-preferred modalities, narratives were elicited from 15 self-identified autistic adults. Narratives were thematically and then discursively examined using Bamberg’s 3-level model of positioning (Bamberg, 1997). Analysis showed that positioning techniques like reported speech, double-voiced discourse, and juxtaposition of characters were used by participants to reveal doubt experienced in self-identifying, claim autistic membership, and assert autism expertise. For autistic adults without formal diagnosis, discussing autism and sharing their autistic identification can be a challenging experience. Understanding how these exchanges are narrated can offer insight on how to better support and affirm self-identified autistic adults. Paper 2 examined the experiences of autistic adolescents and their caregivers of engaging in talk about autism. Adopting a multiperspectival interpretative phenomenological analytic (IPA) approach, 3 parent-child dyads were recruited and individually interviewed. Parents and adolescents were treated as separate participant groups and analysis of individual interviews was followed by cross-case analysis to identify group experiential themes. Adolescents found that conversations with their mothers impacted their autistic identity by strengthening perceived areas of difficulty related to autism and helping them to better understand themselves and conceptualizing autism. Caregivers noted that conversations about autism with their child felt natural, were spaces to frame autism in particular ways, and were opportunities to guide them through challenging social situations and offer support. This IPA study contributes to autism research in describing the psychosocial experience of autism-related talk between parent and child, appreciating the multiple perspectives involved in these interactions. Using hierarchical regression and mediation models, Paper 3 identified the relationships between (a) awareness and knowledge about autism, (b) orientation to neurodiversity perspectives, (c) level of outness, (d) autism-related stigma consciousness, (e) autistic identity, and (f) mental well-being of autistic adults. A sample of 169 participants completed an online survey comprised of measures indexing these constructs. Autism awareness and knowledge, alignment with neurodiversity perspectives, outness, and stigma consciousness were predictive of autistic identity when controlling for gender, sexuality, and number of years knowing about autistic status. When entered into the regression model together, only orientation to neurodiversity perspectives uniquely predicted autistic identity. Additionally, results showed that autistic identity mediated the relationship between stigma-related consciousness and mental wellbeing. This work offers direction for promoting positive autistic identity development. / Thesis (PhD) — Boston College, 2022. / Submitted to: Boston College. Lynch School of Education. / Discipline: Teacher Education, Special Education, Curriculum and Instruction.

BACKGROUND AND OBJECTIVE: It has been well established that children born preterm are at an increased risk of developing Autism Spectrum Disorder (ASD), and that risk increases as gestational age decreases. However, there is limited knowledge on how the ASD phenotype in preterm-born children compares to ASD presentation in children born at term. The objective of this study is to compare ASD core symptoms and characteristics commonly associated with ASD in children born extremely preterm (EP) and children born at term. METHODS: Extremely preterm (EP) participants (n=59) from the Extremely Low Gestational Age Newborn (ELGAN) Study who met diagnostic criteria for ASD at approximately 10 years of age were matched with term participants (n=59) from the Simons Simplex Collection (SSC) on age, sex, and nonverbal IQ. Differences in core ASD symptomatology were evaluated using the Autism Diagnostic Interview-Revised (ADI-R), an in-depth parent interview, and the Autism Diagnostic Observation Schedule, 2nd edition (ADOS-2), a semi-structured clinical observation assessment. Developmental milestones, anthropometrics, seizure disorder, and psychiatric symptoms were also investigated as associated characteristics of ASD. Analyses excluding multiplex EP individuals and their term matches, as well female-only analyses, were also conducted. RESULTS: On the ADI-R, the EP group had lower scores (decreased symptom severity) on verbal communication, specifically stereotypic language, and restricted and repetitive behaviors (RRBs). However, no between-group differences were observed with direct observation based on the ADOS-2 assessment. The EP group was more likely to have delayed speech milestones, lower height, weight, and head circumference, and lower rates of depression and anxiety symptoms. When 7 multiplex EP participants and their term control matches were eliminated from the sample, there were no differences from the primary analyses. Female-only analyses were similar to primary analyses on core ASD symptomatology findings. Regarding associated characteristics, females only differed on height, head circumference, and anxiety symptoms. CONCLUSIONS: Accounting for age, sex, nonverbal IQ, and prior ASD diagnosis status, EP children had less severe stereotypic language and RRB symptoms compared to term children based on ADI-R parent report, but exhibited no differences on parent-reported nonverbal communication or reciprocal social interaction symptoms, or with direct observation of social affective and repetitive and restricted ASD symptoms on the ADOS-2. EP children with ASD also showed decreased physical growth and delayed language relative to those born at term, possibly reflecting the developmental effects of being born EP. In sum, the ASD phenotype was generally similar between EP and term born children, with the exception of less severity of retrospectively parent-reported stereotypic behaviors, lower physical growth parameters, and increased delays in language milestones among EP born children with ASD.

Bakgrund: Autismspektrumtillstånd är en neuropsykiatrisk funktionsvariation och ett brett spektrum som kännetecknar kommunikationsbesvär, svårigheter att anpassa sig i sociala sammanhang samt upplevelse av sensoriska anomalier. Personer med autismspektrumtillstånd kan förekomma inom alla vårdaspekter och har högre risk att drabbas av samsjuklighet i jämförelse med personer utan autismspektrumtillstånd. Syfte: Syftet med studien var att beskriva hur vuxna personer med autismspektrumtillstånd upplever bemötandet inom vården. Metod: En kvalitativ litteraturöversikt med induktiv ansats. Tio artiklar användes från databaserna PubMed och CINAHL. Analysen av data gjordes genom kvalitativ innehållsanalys som beskrivet av Elo och Kyngäs (2007). Resultat: Huvudkategorin som identifierades var varierande personcentrering av vården som bestod av tre kategorier: inkonsistenta individperspektiv, ojämn kompetensnivå och bemötande genom vårdmiljö.  Slutsatser: Personer med autismspektrumtillstånd upplever bemötande inom vården som otillfredsställande med många brister kring anpassningen av bemötandet. Positiva upplevelser var begränsade och baserades på personcentrerade förhållningssätt i bemötandet av patienterna. Comfort theory av Kolcaba et al. (2006) kan användas som stöd för hur man kan individanpassa bemötandet till personer med autismspektrumtillstånd. / Background: Autism Spectrum Disorder is a neurodevelopmental condition and a broad spectrum characterized by communication difficulties, challenges adapting to social situations, and experiences of sensory anomalies. Individuals with autism spectrum disorder can be present across various aspects of healthcare and have a higher risk of comorbidity compared to those without autism spectrum disorder. Aim: The aim of the study was to describe how adults with autism spectrum disorder experience healthcare meetings.  Method: A qualitative literature review with an inductive approach was conducted. Ten articles were selected from the PubMed and CINAHL databases. Data analysis was performed using qualitative content analysis, following the method described by Elo and Kyngäs (2007). Results: The main category identified was varied person-centered care, consisting of three categories: inconsistent individual perspectives, uneven competency level and meeting through healthcare environment. Conclusions: Individuals with autism spectrum disorder perceive the healthcare treatment as unsatisfactory, highlighting numerous deficiencies in the adaptation of care. Positive experiences were limited and based on person-centered approaches in patient interactions. Comfort theory by Kolcaba et al. (2006) can serve as a supportive framework for tailoring the healthcare meeting to individuals with autism spectrum disorder.

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Background: Marginalized population groups are more likely to be under-represented in autistic children’s research. Rationale: Our understanding of the low levels of research engagement among autistic children from these marginalized groups is limited. Objectives: (1) to examine some of the under-represented populations in autism children’s research; (2) to assess the facilitators and barriers contributing to patient engagement in autistic children’s research; (3) to suggest considerations for the development of a more equitable approach to autistic children’s research. Methods: A scoping review was conducted on studies published during January 2011-December 2021 in five electronic research databases by two reviewers in duplicate. English qualitative/quantitative/mixed methods studies that engaged autistic children aged 2-18 and/or their parents as research participants or in the process of patient-oriented research were included. Results: Some of the under-represented marginalized autistic children populations identified from the 21 included studies were: (1) those living in developing/under-developed countries, (2) those who received autism services from centres that do not collaborate with researchers, (3) families of ethnic minority in Western countries, (4) autistic children who received late diagnosis, (5) families whose first language is not English, (6) male parents of autistic children, (7) female autistic children, (8) families with low household income who are not enrolled in governmental healthcare financial support program and (9) those who lack technological literacy skills. Facilitators of patient engagement were: (1) building trust-based relationships among stakeholders, (2) engaging patients throughout research development, and (3) patient engagement in research funding processes. The barriers were: (1) allocation of research funding, (2) identity conflict, (3) applicability of research evidence, and (4) social stigmatization towards autism. Discussion: To enhance patient engagement in autistic children’s research, policymakers, researchers and funders should prioritize participant’s needs in all stages of the research process. Conclusion: The diverse identities autistic children carry should be better acknowledged. An equity approach to research is needed. / Thesis / Master of Public Health (MPH) / Autistic children from certain marginalized population groups are less likely to be engaged in research. This thesis aims to examine the facilitators and barriers contributing to this phenomenon. As predicted, several child and family characteristics, socio-economic factors, and contextual research structures appear to be associated with patient engagement in autism research. Several recommendations are made for policymakers, researchers and funders on ways to prioritize autistic populations’ needs, enhance patient engagement, and promote a more equitable approach to autism research.

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Bakgrund Alla yrkesverksamma inom hälso- och sjukvården kommer med största sannolikhet någon gång i sitt yrkesutövande stöta på personer med AST och kunskap om att vårda dessa personer är därför nödvändigt för alla som arbetar inom hälso- och sjukvården. Syfte Studiens syfte är att beskriva kunskapsläget om stödjande och hindrande faktorer för personer med Autismspektrumtillstånd i mötet med hälso- och sjukvården relaterat till deras neuropsykiatriska funktionsnedsättning. Metod Arbetet är utfört som en strukturerad litteraturstudie med inslag av den metodologi som används vid systematiska översikter. Resultat Det återfanns tre huvudrubriker anpassningar, kommunikation och kunskap som resultatet presenterats under Slutsats Arbetet har visat att det finns ett behov av att förbättra kommunikationen mellan hälso- och sjukvården och personer med AST, öka kunskapen om AST hos hälso- och sjukvårdspersonal och att många av anpassningarna som personer med AST kan behöva för att tillgodogöra sig hälso- och sjukvård inte behöver vara så stora eller omfattande och kan vara bra även för personer som inte har AST. / Background Al healthcare workers will be most likely at some point, or another to come across people with ASD and knowledge about how to best care for people with ASD is therefore necessary for anyone that works in healthcare Aim The purpose of this study was to describe the knowledge of support and barriers to healthcare for people with autism spectrum disorder in relation to their neuropsychiatric disability Method This paper has been conducted as a structured literature review with points of the methodology that’s used in systematic reviews. Results This paper resulted in three main headlines, Accommodations, Communication and Knowledge under which the results were presented. Conclusions This paper has shown that there is a need to improve communication between healthcare and people with ASD, increase the knowledge about ASD for healthcare workers and that many of the accommodations that’s beneficial for people with ASD to better account for their healthcare doesn’t need to be extensive and the accommodations can also be beneficial for people who doesn’t have ASD.