Autism Community Research Articles

“Te Kore and the Artiste within: De-Tyrannizing Autistic Viewpoints in Life, Self, and Identity through Creative Methodologies”

The voices of the autistic community have been systematically forfeited in research and practice, both as a consequence of the double empathy problem and, as a direct result of albeist methodic approaches to researching and representing autism (Milton, 2012., Goodley, 2016, 2018., Heilker & Yergeau, 2011., Hobson et al, 2022., Ridout, 2017). Methodologically speaking, autism creates challenges for allistic researchers, particularly as there is an associated “exaggerated risk” of researching autistic people and as researchers frequently study and thus experience autism, from etic perspectives (Van De Hoonard, 2016, p. 585). This paper contends that these challenges have resulted in a lack of flexibility in methodologies designed to protect those at risk of harm, creating disproportionate fear and an over-surveillance of autistic research participants, despite their potential. Inertia is a direct consequence of this, which manifests itself twofold. Firstly, as the struggle researchers have in capturing meaningful and authentic autistic representation and secondly, of the methodic implications autistic inertia presents. What is suggested, therefore, is a subversion of homogeneous ways of knowing from the production of quasi-aesthetic representations of autistic voice, favoring those creative methodologies which appreciate that autism is not experienced diachronically. As to capture the realities of contemporary autistic life, dividing practices of ableism must be challenged (Goodley, 2018). Therefore, by centralizing autistic research participants as “insiders” to autistic worlds, researchers will have to lay aside academic habits and rethink, heuristically, how to privilege unobscured autistic voices through transabelism (Garland-Thompson, 2005). For in order to carve out hybrid dilatory spaces from which autistic people can develop their narrative capital, a transableist agenda must be pushed. What will ensue are creative and flexible methodologies that align with social justice beliefs and resist methodic stasis and inertia; as decisions to explore the lifeworlds we experience, as autists, comes with no modus operandi.

Therapeutic Drumming for Mental Health in the Autism Community: A Scoping Review

Abstract Date Presented 04/20/2023 This scoping review analyzed the available evidence for a therapeutic drumming intervention to improve mental health in autistic clients across the life span. Analysis revealed consistency in implementation, with variability of outcome instrumentation. Primary Author and Speaker: Dina Prisco Additional Authors and Speakers: Zahava Friedman Contributing Authors: Jorge Ochoa

Caregivers' Perspectives on Use of and Need for Driving Resources for Their Autistic Adolescent.

Autistic individuals who independently travel-or commute without companionship or supervision-report feeling more connected to social, education, and employment opportunities. Despite the potential for independent transportation to improve quality of life, little is known about what transportation-related resources, specifically driving focused ones, exist for autistic individuals or how they and their families find and use them. The objectives of this study were to characterize: (1) where and how families in the United States find driving-related resources for their autistic adolescents; (2) families' perceived availability and utility of identified resources; and (3) resources families believe should be developed. We conducted semi-structured interviews with 33 caregivers of autistic adolescents aged 16-24 years without an intellectual disability. We used a directed-content approach to develop and implement codes; three trained coders analyzed all transcripts (inter-rater reliability ≥0.8 for all codes). Members of the research team reviewed coded data and created code summaries, which were then developed and discussed by the larger research team to determine final consensus. Caregivers described a few existing resources that were helpful in guiding driving-related decisions. In addition, caregivers voiced that there were limited resources tailored to the unique needs that arise while teaching or learning how to drive, particularly ones that support their own and their adolescent's mental health. The limited resources and services identified as helpful-specifically support groups/perspectives of other families and specialized driving instructors-are seemingly difficult to find, costly, and/or perceived as having geographic- and time-related barriers. There is a critical need and opportunity for stakeholders of the autism community to both expand access to existing and develop novel driving-related resources for families with autistic adolescents, with a particular focus of supporting caregiver and adolescent mental health.

Reframing Social Skills Practices for Autistic Students: A Responsive Framework for Assessment and Intervention

ABSTRACT Social communication deficits are one of the defining features of autism spectrum disorder. In schools, social communication deficits are assumed to be due to a skill acquisition issue and remediated through social skills instruction; however, social skills instruction has been fairly criticized, particularly by those in the autistic community, as serving the needs of third parties (e.g. teachers) rather than the autistic student by teaching and reinforcing a neurotypical standard of social behavior and minimizing autistic perspectives. The purpose of this paper is to propose a framework for culturally-relevant and flexible social skills assessment and intervention that emphasizes student autonomy, functionally relevant outcomes, and culturally sensitive social skill development. The hope is that this framework can be used to generate further research into the effectiveness and acceptability of a new paradigm of social skills instruction.

Autistic Co-Led Community Priorities for Future Autism Research in Aotearoa New Zealand.

Previous studies of community priorities for autism research have been limited by low representation of autistic people and thus a bias toward the views of families and professionals. We aimed to determine the first community-led priorities for autism research in Aotearoa New Zealand (NZ). Autistic people were essential partners in the project, from inception and design through to methods and outputs. We gathered the views of the autistic and autism communities (including family, practitioners, and researchers) through focus groups (n = 55) and an online survey (n = 450). Almost 40% of the survey respondents indicated that they were autistic. The findings across the focus groups and survey highlighted the importance of research that centralizes the experiences and needs of autistic people, particularly of autistic New Zealanders, including culturally specific research for Māori and Pacific peoples. All five priority topics for autistic adults were also priorities for at least one other group: (1) Health, mental health, and well-being of autistic people (all groups); (2) Services across the life span (autistic adults, health care/disability, and education practitioners); (3) Needs of autistic people in Aotearoa NZ (autistic adults, whānau); (4) Perspectives from autistic people with a diverse range of support needs (autistic adults; education practitioners); (5) Quality of life of autistic people in Aotearoa NZ (autistic adults; health care/disability practitioners). We discuss the advantages of autistic involvement in research, and how these community priorities can inform future research and policy in NZ.

Who Is Attending? The Role of Child Ethnicity and Maternal Demographics in Research Engagement and Early Identification of Autism.

Inequitable access to early autism developmental surveillance is evident globally. However, there is limited research examining autism diagnosis, ethnicity, and community profiles when engaging in research for the early identification of autism. We aimed to understand the relationships between child ethnicity, maternal demographics, and autism diagnosis, comparing retrospective data from the 2016 census for eight local government areas (LGAs) in Victoria, Australia. Maternal and child health (MCH) nurses monitored 13,511 children under 42 months for the early signs of autism using the Social Attention Communication Surveillance-Revised (SACS-R) and SACS-R Preschool (SACS-PR) tools during well-child checks. Of these, 340 children with a "high likelihood" of autism attended developmental assessments. Participants' maternal ethnicity ('European maternal ethnicity', EME; 'non-European maternal ethnicity,' N-EME; 'mixed maternal ethnicity,' MME'), socioeconomic factors, and autism prevalence were compared to their LGA community. Results indicated that study participants were representative of their LGA communities, though bi- and multilingualism was higher in our cohort. Differences in current maternal employment, maternal education, annual family income, and autism prevalence were found between the N-EME, EME, and MME groups. Our study found that research engagement was driven by maternal education, maternal employment, and annual family income, and further research is required to understand these relationships.

Metaphorical and multimodal representation of autism in Chinese video public service announcements: Lonely twinkling

Metaphors are prevalent in the discourse of autism. Inappropriate use of metaphors might lead to stigmatization of the autistic group. Nevertheless, the multimodal representation of autism in metaphorical video PSAs remains underexplored, leaving the metaphorical portrayals of autistic community in the PSA discourse unclear. This study addresses the aforementioned issues by investigating the representation of autism in 39 Chinese metaphorical video PSAs. Findings showed that 1) the incidence and clinical characteristics were two clinical aspects of autism multimodally represented in PSAs; 2) symptoms of Difficulties in Social Communication were more frequently presented; 3) metaphorical representations of autism concerned several topics, including the autistic group, the lives of autistic children, treatment of autism, clinical characteristics, autism, and parents of autistic children; 4) the most frequent metaphor children with autism are stars/children of stars labelled the autistic children as stars, potentially contributing to stigmatization. Practical implications for designing metaphorical video PSAs about autism were provided.

Exploring Identity Importance for Autistic Adults and Associations with Disclosure Experiences: A Brief Report.

A strong autistic identity can help to support mental well-being, reduce anxiety and depression, increase self-esteem, and strengthen a shared community for autistic people. Autistic people are regularly faced with a decision to disclose their autistic identity to others and report a range of experiences after disclosure. The purpose of this brief report was to examine the association between identity and disclosure decisions in a sample of autistic adults to gather preliminary evidence justifying future research. Specifically, we were interested in learning more about how autistic identity is associated with one's approach to disclosure, while also exploring associations with other identities such as ethnic, gender, sexual, and religious identity. Participants (N = 111) completed an online questionnaire about their intersecting identities and their approach to disclosure. The research team that conducted this study was composed of both autistic and nonautistic researchers. Results demonstrated that participants who felt their autistic identity and sexual identity were highly important also reported frequent disclosure of being autistic. Religious, gender, and ethnic identity were not associated with one's disclosure decisions or their disclosure outcomes. Overall, the results of this study emphasize the link between autistic and sexual identities and autism disclosure, but more research in this space is needed to better support the wider autism community.

Online Worship and the Autism Community

The COVID-19 pandemic forced many faith communities to move their services online. This may have been a pragmatic decision to adapt to health regulations but it also provided an accessible option for autistic worshipers to participate in their faith community. Although there are some challenges to online worship services, they remain an important option for autistic members of faith communities.

Fidelity to the ACT SMART Toolkit: an instrumental case study of implementation strategy fidelity

BackgroundEvidence-based practices (EBPs) are shown to improve a variety of outcomes for autistic children. However, EBPs often are mis-implemented or not implemented in community-based settings where many autistic children receive usual care services. A blended implementation process and capacity-building implementation strategy, developed to facilitate the adoption and implementation of EBPs for autism spectrum disorder (ASD) in community-based settings, is the Autism Community Toolkit: Systems to Measure and Adopt Research-based Treatments (ACT SMART Toolkit). Based on an adapted Exploration, Adoption decision, Preparation, Implementation, Sustainment (EPIS) Framework, the multi-phased ACT SMART Toolkit is comprised of (a) implementation facilitation, (b) agency-based implementation teams, and (c) a web-based interface. In this instrumental case study, we developed and utilized a method to evaluate fidelity to the ACT SMART Toolkit. This study responds to the need for implementation strategy fidelity evaluation methods and may provide evidence supporting the use of the ACT SMART Toolkit.MethodsWe used an instrumental case study approach to assess fidelity to the ACT SMART Toolkit during its pilot study with six ASD community agencies located in southern California. We assessed adherence, dose, and implementation team responsiveness for each phase and activity of the toolkit at both an aggregate and individual agency level.ResultsOverall, we found that adherence, dose, and implementation team responsiveness to the ACT SMART Toolkit were high, with some variability by EPIS phase and specific activity as well as by ASD community agency. At the aggregate level, adherence and dose were rated notably lowest during the preparation phase of the toolkit, which is a more activity-intensive phase of the toolkit.ConclusionsThis evaluation of fidelity to the ACT SMART Toolkit, utilizing an instrumental case study design, demonstrated the potential for the strategy to be used with fidelity in ASD community-based agencies. Findings related to the variability of implementation strategy fidelity in the present study may also inform future adaptations to the toolkit and point to broader trends of how implementation strategy fidelity may vary by content and context.

13th AUTISM EUROPE INTERNATIONAL CONGRESS CRACOW 7-9 OCTOBER 2022. A HAPPY JOURNEY THROUGH LIFE

This review from the 13th Autism Europe International Congress held in Cracow as a hybrid event, has the ambition to showcase three perspectives on the newest scientific trends in the autistic community: perspectives from researchers/academics, practitioners, autistic people and their family members.

Experiences and needs of Chilean autistic communities for inclusion and well-being: a phenomenological study

Experiences and needs of Chilean autistic communities for inclusion and well-being: a phenomenological study

Improving Autistic Students' Experiences in Higher Education: Developing a Community Framework for Individual Autistic Student and Autistic Community Flourishing

As the fastest growing cohort of disabled student populations, autistic students are often let down by inherently ableist institutions of higher education (HE). Traditionally, institutions of HE have sought to support autistic students through an individualized approach, placing the responsibility on the autistic student to seek out and advocate for academic and nonacademic support. However, there remain opportunities for the broader community to foster autistic individual and community well-being. This conceptual analysis evaluates the current environment and approaches in HE for supporting autistic academic success and well-being and describes a community framework based on a collective combined effort that invites individual autistic students and autistic community flourishing. It contributes an alternative approach to supporting autistic students, making autistic individual and community well-being the responsibility of peers, support staff, instructors and faculty, and the institution, identifying a need to restructure institutions into ones that work to promote autistic culture and provide autonomous supports and accommodations. Right now, there are a lot of different ways in which institutions of Higher Education (HE; i.e., colleges and universities) do and do not support autistic students. There are opportunities for peers, instructors and faculty, support staff, and institutions to get involved in supporting autistic students. However, institutions of HE do not have a clear framework to make the wellbeing of autistic students a community responsibility. The purpose of this article is to evaluate the current ways in which institutions of HE support the academic success and wellbeing of autistic students and to describe a framework for a collective effort to promote individual autistic student and community flourishing. Our evaluation demonstrates that non-acceptance of autism, stigma, and oppression may impact an autistic students' experiences, making the transition to HE, academic success, and wellbeing more difficult. Traditional approaches to supporting autistic students, including formal academic supports, informal academic supports, and non-academic supports, may not be accessible to all autistic students. Our framework uses a critical understanding of learning and autism, valuing autistic experience. The goal is to support autistic academic success and wellbeing and to reduce the need for autistic students to mask, change, or seek out support to ‘fit in’ to HE. The framework centers individual autistic students and the autistic community, placing the responsibility of academic success and student wellbeing on the larger HE collective. Peers, instructors and faculty, support staff, and institutions are shown as having influence on the academic success and wellbeing of autistic students. These key players can promote autistic culture by being open to autistic students' decisions around disclosure; applying a Universal Design for Learning (UDL); recognizing neurodiversity as an important diversity, equity, and inclusion initiative; offering and engaging in neurodiversity trainings; developing and enhancing disability cultural centers; and featuring autistic culture in the academe; autistic culture can be promoted. Furthermore, they can support autistic student agency by honouring autistic students' autonomy, building comprehensive and connected services; normalizing academic accommodations; and offering non-academic supports. The authors hope that this article helps to create a system-wide change through a collective, combined effort to promote individual autistic student and autistic community flourishing in HE.

Early-Career Autism Researchers Are Shifting Their Research Directions: Tragedy or Opportunity?

Early-career researchers (ECRs) are among the most creative, talented, and energetic researchers, and they play an important role in knowledge production and pushing scientific boundaries. Recent debates have implied that many early-career autism researchers are compelled to shift their areas of focus within autism research as a consequence of their work being scrutinized by the autistic and autism communities. In this Perspective, I draw on my own experience as an early-career autism researcher having recently pivoted my research focus to become more aligned with community priorities. I reflect on whether these putative shifts in research direction are, indeed, a tragedy, as has previously been suggested, or, in fact, an opportunity for autism researchers. I argue that pivoting in research is a demonstration of science adapting to the ever-evolving needs in society and changes in our understanding of neurodiversity, neurodivergence, and research methods. While disagreements between the autistic, autism, and research communities may well feel uncomfortable, these tensions also present an opportunity for us-as non-autistic autism researchers-to reflect and to act toward building trust with the community. I recommend three areas for reflections: the purpose of our research, our position of power, and the epistemic limits of our academic expertise. I end by encouraging ECRs to consider taking actions, however small, to lead the charge in improving practices in autism research.

Autism community priorities in diverse low-resource settings: A country-wide scoping exercise in India.

It is vital to directly engage with the autism community in order to develop better services and drive the research agenda. While some studies in high-income countries have mapped the priorities of the autism community, there is a severe dearth of such efforts in the global south. Five million autistic individuals are estimated to live in India alone, and there has been little effort to map their priorities. Moreover, studies in high-income countries focused largely on research priorities, and not so much on skills training and interventions. Keeping these needs in mind, we conducted an online survey followed by an in-depth conversation with parents of autistic children and autistic adults drawn from across India. We found that the respondents reported self-help skills to be the most important for training, as they considered it fundamental for every other aspect of life. Speech and language therapy was considered to be the highest intervention priority for this group, highlighting the importance of social communication. Mental health counselling was also considered to be a high priority, but several parents identified it as being more relevant for themselves rather than for their children. Within research, the topmost priority was to understand ways in which the community can better support autistic people. We hope that these findings will help researchers, policymakers and service providers to be able to make well-informed decisions, develop relevant services and shape future research.

Repetitive Negative Thinking As a Transdiagnostic Prospective Predictor of Depression and Anxiety Symptoms in Neurodiverse First-Semester College Students.

Improving the understanding and treatment of mental health concerns, including depression and anxiety, are significant priorities for autistic adults. While several theories have been proposed to explain the high prevalence of internalizing symptoms in autistic populations, little longitudinal research has been done to investigate potential causal mechanisms. Additional research is needed to explore how proposed contributors to depression from general population research predict and/or moderate the development of internalizing symptoms in autistic individuals. In this study, we investigated the relation of one established risk factor, repetitive negative thinking (RNT), to internalizing symptoms over the course of college students' first semester, additionally examining whether this association is moderated by a measure of autistic traits. Students were recruited from 4 northeastern U.S. universities: 144 participating students included 97 nonautistic students and 47 participants who either reported a formal autism diagnosis (n = 15) or endorsed a history of self and/or others thinking that they may be autistic (n = 32). Participants completed a baseline survey battery within their first 2 weeks of starting college, a brief biweekly survey throughout their first semester (up to 24 times across 12 weeks), and an endpoint packet. Elevated trait-like RNT at baseline was prospectively associated with biweekly ratings of depression and anxiety symptoms across the semester. In addition, greater RNT was synchronously related to elevated sadness, anhedonia, and anxiety throughout the semester. Contrary to hypotheses, a shorter term predictive relationship between RNT at one timepoint and mood symptoms at the next was largely unsupported. While these patterns were observed across neurotypes, students with higher self-reported autistic traits were more likely to experience RNT, as well as depressive and anxiety symptoms. These preliminary findings highlight RNT as a specific mechanism that may be a useful prevention and/or intervention target toward reducing the elevated depression and anxiety rates in the autistic community.

Excessively Positive Narratives Diminish Autistic People of All Ages

Evolving discourse about autistic individuals swims in murky territory, with ongoing debates over how the autistic community should represent itself and how the neurotypical population should engage with them. One tendency that has emerged is the depiction of autistic individuals as kind and well-intentioned but also simpleminded and guileless. This, in combination with the dominant imagery of autistic individuals as children, has created an atmosphere in which all autistic individuals are stripped of their human complexity by the neurotypical gaze, and by extension are not given the fulfillment, support, and resources needed to make possible a life of sufficient quality.

Autistic characteristics and mental health symptoms in autistic youth during the first COVID-19 wave in Canada.

Autistic youth are at heightened risk for mental health issues, and pandemic-related stressors may exacerbate this risk. This study (1) described caregiver-reported youth mental health prior to and during the pandemic; and (2) explored individual, caregiver, and environmental factors associated with changes in autistic characteristics, social-emotional symptoms, and overall mental health. 582 caregivers of autistic children (2-18 years old) completed an online survey between June and July 2020 in which they provided demographic information, their child's pre-COVID and current mental health, autistic characteristics, and social-emotional symptoms. Caregivers also rated their own perceived stress, and COVID-related household and service disruption. According to caregivers, youth experienced more autistic characteristics and social-emotional concerns during the pandemic. Autistic youth were also reported to experience poorer overall mental health during the pandemic than before the pandemic. Older youth whose caregiver's indicatedhigher perceived stress and greater household disruption were reported to experience more autistic traits during pandemic. Caregiver-reported increases in youth social-emotional symptoms (i.e., behavior problems, anxiety, and low mood) was associated with being older, the presence of a pre-existing mental health condition, higher caregiver stress, and greater household and service disruption. Finally, experiencing less household financial hardship prior to COVID-19, absence of a pre-existing psychiatric condition, less caregiver stress, and less service disruption were associated with better youth pandemic mental health. Strategies to support the autistic community during and following the pandemic need to be developed. The developmental-ecological factors identified in this study could help target support strategies to those autistic youth who are most vulnerable to mental health problems.

Linking Sensory Integration and Processing With Mental Health in Autism: A Retrospective Review of Survey Data.

Although a central tenet of occupational therapy practice, evidence-based practice is at times overrepresented by research and can overlook the contributions of clinical expertise, the lived experience, and context. This survey affords the occupational therapy practitioner the opportunity to understand sensory integration and processing (SI/P) as experienced by autistic adults. To explore the following research question through a retrospective analysis of an internet-based survey: What is the relationship between the SI/P differences and mental health concerns reported by autistic adults? Nonexperimental; retrospective analysis of data collected from September 2018 through June 2019. The analysis team joined the project after the survey had been launched. The Grand Sensory Survey (GSS) was available internationally through the websites and social media accounts of the Autistic Empire and STAR Institute for Sensory Processing. The sample included 440 total responses. Excluding responses from participants ages ≤18 yr (n = 24), 416 responses were included: n = 189 identified as autistic, n = 147 identified as nonautistic, and n = 80 did not provide a response to this query. The GSS included questions about demographics, mental health, and sensory experiences. Both SI/P disruptions and sensory sensitivity predicted anxiety and depression (p < .001). Differences in SI/P are significant factors in mental health for autistic adults. What This Article Adds: We implicate multiple aspects of SI/P and their influence on mental health among autistic adults. The autistic-led design of the survey ensures representation of issues that are pivotal to the autistic community, broadening the template for aspects of SI/P that should be considered when looking at client factors in autism and influence on function and participation. Positionality Statement: The authors deliberately use identity first language in keeping with requests from the autistic community (see https://autisticadvocacy.org/about-asan/identity-first-language/). This language is favored by autistic communities and self-advocates and has been adopted by health care professionals and researchers (Bottema-Beutel etal., 2021; Kenny etal., 2016). This article is written from the perspective of the social model of disability and a neurodiversity affirming frame of reference. Three of the five authors are autistic.

Ayres Sensory Integration® for Addressing Play in Autistic Children: A Multiple-Baseline Examination

Play is an area of difficulty for autistic children, and occupational therapy practitioners need evidence to guide interventions to improve play for this population. Ayres Sensory Integration® (ASI) intervention has not yet been studied for its impact on play outcomes. To examine the impact of ASI intervention on play types in autistic children. Nonconcurrent, multiple-baseline design across subjects. Outpatient occupational therapy clinic in New England. Three autistic children, ages 5, 6, and 6 yr. Twenty-four ASI sessions. Frequency of play type was coded using partial interval coding. Progress monitoring used Goal Attainment Scaling. All three participants demonstrated changes in the frequency of specific types of play, but changes varied among them. Findings suggest that ASI intervention may alter a child's patterns of play. What This Article Adds: This study is the first to examine the impact of ASI on play and the third that documents the feasibility of single-subject research for studying ASI. If confirmed in future studies, ASI could become an evidence-based intervention for improving play, an important outcome for autistic children and the profession of occupational therapy. Positionality Statement: This article uses the identity-first language autistic people. This nonableist language describes their strengths and abilities and is a conscious decision. This language is favored by autistic communities and self-advocates and has been adopted by health care professionals and researchers (Bottema-Beutel etal., 2021; Kenny etal., 2016).