Autism Community Research Articles

Stim culture: Outlining anime's appeal to the autistic community

This article explores how anime contributes to the creation of a culture that attracts autistic individuals and supports their lives. We identify three aspects that may explain why it becomes a special interest that is both deeply personal and widely shared: visual tactility, or animation stimming; layers, or moving through estranged worlds; and unmasking, or emerging neurocultures and languages. Tentatively presenting anime as ‘stim culture,’ we uncover new directions in autism and fan culture research.

An Empirical Qualitative Investigation into Psychosexual Development in and Sex Education for Autistic Youth: Insights from Autistic and Non-Autistic Young Adults.

The present study was designed to examine autistic and non-autistic young adults' lived experience in psychosexual development and sex education and to solicit recommendations on how to improve sex education programs. Participants included 10 autistic young adults and 10 non-autistic young adults aged 18 to 24 years. The two groups were matched for sex and education level. One-on-one semi-structured interviews were conducted. Participants' responses were analyzed using comparative interpretative phenomenological analysis. Four superordinate themes emerged: (1) "Who am I as a sexual being"; (2) Making sense of psychosexual development; (3) Sources of information; and (4) "Dear developers of sex education programs". Most autistic participants shared feelings of intense anxiety about romantic and sexual relationships, in part due to anticipated difficulties in social communication. Interestingly, although interview questions mostly focused on sex and adolescence, issues surrounding romantic relationships and their links to current self-concept were prominent themes in many autistic participants' responses, suggesting that autism-friendly sex education programs need to address issues related to romance and should target not only adolescents but also young adults. Also, autistic participants learned from peer interactions within the autistic community, highlighting the importance of facilitating peer exchanges and continuous learning beyond completing a program. Regarding delivery format, autistic participants valued concreteness and a mixed-sex small-group setting, and recommended using visual cues, real life examples, and role play. Autistic individuals have unmet psychosexual educational needs. Further research may consider their needs, lived experience, and recommendations when developing new autism-friendly sex education programs.

A qualitative interview study on quality of life and ageing experiences of autistic adults

Quality of life across the lifespan has been established as a key research priority by the autism community. Still relatively little is known about the quality of life and ageing experiences of older autistic adults. Most studies to date have used generic measures of quality of life which may not accurately capture the experiences of autistic people. The aim of this qualitative study was to understand how autistic adults experience and define quality of life as they age. We conducted semi-structured interviews with 16 autistic adults aged 40+ from the UK and Luxembourg. Using reflexive thematic analysis, we identified five themes that contribute to quality of life: (1) Diagnosis is pivotal, (2) Connection with others, (3) Autonomy over space and time, (4) ‘Paperwork of life’, (5) Vulnerability. This study identifies autism-specific aspects of quality of life and highlights ways in which ageing and autism intersect and impact quality of life.

22 Digital citizenship among children and youth with autism: Developing guidelines for promoting healthy screen time use

Abstract Background In response to the rising prevalence of screen-based usage among children, particularly those with autism, this study addresses the urgent need for tailored guidelines and strategies to support the digital citizenship and healthy screen time management of children and youth with autism. The currently available screen time guidelines do not adequately account for the specific requirements of autistic children, prompting an exploratory investigation into the information needs of clinicians and families in this domain. Objectives To develop clear and specific guidelines for caregivers and clinicians to facilitate the digital citizenship of children with autism. Design/Methods This multi-phase study was guided by the Knowledge to Action framework for knowledge development (figure 1). First, we identified the existing knowledge gaps regarding screen time use by conducting semi-structured interviews with 15 clinicians. Next, a Delphi method was employed, involving 30 experts in autism, comprising 20 clinicians and 10 caregivers. These experts participated in a series of three surveys, wherein they rated their agreement with a set of statements, encompassing potential guidelines and strategies. Statements that garnered agreement from over 75% of the panel were included in the final guidelines, which were categorized into six sections. In the last phase, evaluation and implementation of the guidelines were studied by asking parents and clinicians for their opinion on key criteria, including accessibility, relevance, clarity, usability, knowledge, and delivery. Results The 1st phase highlighted the need to create uniform recommendations for screen time management. The 2nd phase finalized a set of guidelines comprises six key sections, each playing a pivotal role in promoting healthy screen time use among children with autism: General principles; considerations related to the timing and content of leisure screen time; strategies for caregivers and clinicians to oversee and regulate screen time usage; behavioral indicators of screen time overuse; additional guidelines tailored for clinicians; and a section on resources. In the evaluation phase, participants responded positively and reported that disseminating the guidelines online is feasible and useful. Participant were satisfied with the key criteria with responses scoring between “Somewhat agree” and “Agree” across all domains. Please visit https://asdtechnology.osot.ubc.ca/screen-time-use-guidelines/ Conclusion The guidelines established through this collaborative effort between stakeholders in the autism community provide valuable insights and a tangible framework to address screen time overuse in children with autism. By identifying and addressing the unique needs of this population, these guidelines aim to assist clinicians and caregivers in nurturing healthy digital citizenship among autistic children.

Quality-of-life measurement in randomised controlled trials of mental health interventions for autistic adults: A systematic review.

Autistic people are more likely to have health problems than the general population. They, and people who care about them, have said mental health research is very important, and some autistic adults have said quality of life is the most helpful area to research when focusing on mental health. Autistic people should also be more deeply involved in making decisions in research. Our review aimed to find out if and how quality of life is being measured when mental health treatments are being tested, and how autistic people and the wider autism community are involved in these studies. We searched four databases and other sources and found over 10,000 records. But just 19 research studies were testing mental health treatments for autistic adults, and only five of those measured quality of life. When they did measure quality of life, it was measured in different ways and there was not much information given on how communities were involved. We suggest mental health research should measure quality of life more often and in ways that are more helpful for autistic people. Our analysis found that mental health research needs to include a wider variety of autistic people, and autistic people should be more involved in the various parts of research.

A type 1 hybrid multi-site randomized controlled trial protocol for evaluating virtual interview training among autistic transition-age youth

A number of policies mandate that autistic transition-age youth receive employment services to prepare for the workforce before high school graduation. A key limitation to these services is the job interview component, which relies on non-standardized, resource-intensive, staff-led role-plays to help autistic transition-age youth improve their interview skills. The autism community has called for better job interview preparation. To address this gap in services, our team, collaborated with the autism community to adapt the intervention, Virtual Reality Job Interview Training (VR-JIT; effective among adults with serious mental illness), into Virtual Interview Training for Transition Age Youth (VIT-TAY). This adapted intervention was tailored to meet the needs of autistic transition age youth while maintaining the core components of VR-JIT (i.e., an online job interview simulator with four levels of automated feedback and e-learning content). A pilot randomized controlled trial (RCT) demonstrated VIT-TAY's feasibility and initial effectiveness at improving job interview skills, reducing anxiety, and increasing employment rates within six months when added to transition services or pre-employment transition services (Pre-ETS). Thus, the overarching goal of this Hybrid Type 1 effectiveness-implementation study protocol is to conduct a fully-powered RCT of VIT-TAY across 16 schools in various geographical locations. Our specific aims are to 1) Evaluate whether Pre-ETS (or transition services) with VIT-TAY, as compared to Pre-ETS (or transition services) with an active control intervention (i.e., job interview didactics/e-learning with a series of 3–5 min videos of employed autistic adults talking about their career pathways) enhances employment outcomes; 2) Evaluate mechanisms of employment by nine months post-randomization; and 3) Conduct a multilevel, mixed-method process evaluation of the initial implementation of VIT-TAY across settings (e.g., acceptability, feasibility, and barriers and facilitators of implementation).

Autism Training for Law Enforcement Officers: Perceptions From the Field.

Autistic individuals and law enforcement officers are likely to engage under various circumstances within the community. Therefore, law enforcement officers require training on supporting those with autism and better understanding autistic behaviors. Aims for this study include: (1) developing and delivering high quality professional development on autism spectrum disorder (ASD) to support autistic individuals during encounters with law enforcement officers, and (2) examining how law enforcement officers respond to the professional development session. For this study a four-hour, in-person training on autism for law enforcement officers was developed. Law enforcement officers (n = 27) attended the training session. Subsequently, participants completed an open-ended survey gathering perceptions related to the topics covered in the training, thoughts on the feasibility and applicability of content, and transfer to future safety encounters involving autistic individuals. Data was analyzed using a qualitative approach including concept driven thematic coding with constant comparisons. Data yielded themes on experiences with the autistic community, strategies learned from the training, thoughts on specific content, and feedback on the training format. Overall, law enforcement officers reported they felt better prepared, more knowledgeable on the autistic community, and believed the strategies were feasible and applicable to the field. These findings point to the importance of training on autism and that law enforcement officers found it was time well spent. Future directions include examining how training transfers to practice in the field and ways to connect law enforcement officers with the autistic community outside of emergency response.

Individual Education Plan Priorities: Insights From the Autistic Community and Educators Supporting Autistic Learners

ABSTRACTIndividual education plan (IEP) quality is a strong predictor of student outcomes and progress towards their goals. In the Republic of Ireland, unlike many other jurisdictions, IEPs are not compulsory, regulated or assessed. Therefore, the aim of our co‐produced, mixed‐methods study was to identify and understand the IEP priorities of the autistic community as well as educators supporting autistic students in the Republic of Ireland and Northern Ireland. In total, 109 participants completed the survey. Sixty‐five of the participants were non‐autistic educators, 34 were autistic non‐educators, and 10 were autistic educators. Social inclusion, independence and communication were IEP goals prioritised by all participant groups. Promotion of autistic well‐being was the primary reason for these priorities. The impact of these findings, particularly as they relate to Initial Teacher Education, is discussed.

Resilience and strengths in the Black autism community in the United States: A scoping review.

Gaps in research knowledge pertaining to resiliency factors and strengths among the Black autism community, inclusive of autistic persons and their support system exist. A scoping review was conducted to further explore quantitative, qualitative, and mixed methods studies that investigate resiliency factors and related strengths in the Black autism community in the United States. A total of 436 articles were identified, with 28 studies included in the final review. Results demonstrated that (1) strengths of Black autistic persons across the life course have been disregarded in research; (2) Black caregiver advocacy, while common, is also a developmental process that can be supported by community-based interventions; (3) informal supports including family and friends play an instrumental role in supporting the well-under investigated being of Black parents of autistic children; and (4) spirituality is often endorsed by Black caregivers of autistic children, such as playing a role in acceptance of the autism diagnosis and with coping with difficult life situations. Research and practice implications are discussed.

Empowering Voices: Fostering Reflective Dialogue and Redefining Research Dynamics in Participatory Approaches With the Autistic Community

Within this brief report, the authors, who are mostly neurodivergent and a majority autistic, outline some of the challenges and historical failings of participatory research with the autistic community. There is an urgent need to explore creative ways to ensure that research engages with autistic people in an active, meaningful, and valuable way (Den Houting et al., 2021; Fletcher-Watson et al., 2019; Garfield & Yudell, 2019). The authors detail the process of using reflective dialogue to explore the participatory research group’s personal experiences of mental health at a university. The participatory group later presented their experiences at a webinar attended by more than 200 strategic and supporting staff from UK universities. The group found reflective dialogue to be useful in addressing many of the failings of participatory research with the autistic community, such as redressing power imbalances and finding it to be personally beneficial and validating. The authors detail how this might be implemented and argue that this approach has valuable applications within autism research and beyond and should be explored further.

Promoting auditory accessibility for the Autism Spectrum Disorder (ASD) on the public transport system

The Autism Spectrum Disorder (ASD) is mainly characterized by a difficulty with neurotypical social interactions, a need for orderliness and routine, and a hypersensibility to stimuli. From all sensory stimuli, sound is proven to be most disturbing to autistic individuals. Most autistics experience severe anxiety and stress having to navigate a world that was not built for them. Therefore, this study aims to understand (quantify and qualify) the atypical response to sound - especially on ASD persons - and the neurological factors behind it. The next step on this research is reviewing literature regarding architectural design strategies for ASD. Later on, using a subway station from the city of São Paulo as study object, this paper will propose a guideline for architectural design for ASD focused on the metro system. This study will contribute to the better understanding of the Autistic Community´s sensory diversity and to a more inclusive architectural designing process.

Community views of neurodiversity, models of disability and autism intervention: Mixed methods reveal shared goals and key tensions.

What is already known about the topic? Some people support the neurodiversity movement and other people criticize it. They often disagree about what the neurodiversity movement means. Confusion about what the neurodiversity movement is makes it hard for people to agree about how best to support autistic or disabled people.What does this article add? We studied autistic and autism community members' views on the neurodiversity movement and autism interventions. Most participants supported the neurodiversity movement. Support for the neurodiversity movement was related to wanting to change society and make places more comfortable for autistic people. Neurodiversity supporters felt autistic children should choose their own intervention goals and that autistic adults should help children choose goals. Neurodiversity supporters did not think autistic people should be taught to act less autistic. Both those agreeing and disagreeing with the neurodiversity movement said that it is important to help autistic people be well. Many participants said that society causes all the difficulties disabled people experience. Yet they were somewhat open to helping people grow by teaching them useful skills and trying to cure depression and epilepsy.Implications for practice, research or policy. To better help autistic people, we should listen to participants in this study. They called for improving society, building more spaces where autistic people feel comfortable and helping autistic people lead change. They warned against teaching autistic people to hide their autism. Critics of the neurodiversity movement should read this article to better understand what neurodiversity movement supporters believe. By taking time to learn from one another, we can work together to better support autistic people.

Insistence on sameness, repetitive negative thinking and mental health in autistic and non-autistic adults.

Autistic people are more likely to have mental health problems than non-autistic people. We know that having repetitive and negative thoughts can contribute to multiple mental health problems such as depression and obsessive-compulsive disorder. Autistic people often do the same behaviours repetitively, and they may also have more repetitive thinking styles. This could contribute to higher rates of mental health problems in autistic people. In this research, we wanted to find out if higher rates of repetitive behaviours contributed to depression and anxiety, and whether this relationship was because of repetitive negative thinking. We asked three groups of autistic adults to take part in the research. Sixty-seven autistic clinical participants were recruited from clinical settings and had moderate depression. Fifty-four autistic community participants and 66 non-autistic community participants were recruited from community settings. All participants completed measures of repetitive behaviours; a measure of anxiety and depression; and two measures of repetitive negative thinking (ruminating and obsessing). Autistic community participants had significantly higher repetitive behaviours, rumination and obsessing scores than non-autistic community participants. We found that higher rates of repetitive behaviours contributed to more repetitive thinking (obsessing and ruminating), which contributed to higher rates of depression and anxiety. The higher rates of repetitive negative thinking found in autistic individuals may contribute to higher rates of mental health problems in this group. Mental health assessments and interventions for autistic people should therefore consider the role of multiple forms of repetitive negative cognition and behaviour, which cut across diagnostic categories such as anxiety, depression and obsessive-compulsive disorder. These should be considered when aiming to understand why individuals develop mental health conditions and why these conditions persist.

(Re)thinking about self-harm and autism: Findings from an online qualitative study on self-harm in autistic adults.

There is a higher prevalence of self-harming behaviours within the autistic community than is experienced by the general population, in addition to co-occurring mental health conditions such as anxiety and depression. To date, research has focused on quantifying and categorising the numbers of autistic people self-harming, what types of harming they are engaging in and what functions the harming performs. Autism research has historically focused on the opinions and experiences of parents, carers and clinicians, with a belief that autistic people are unable to present their own experiences and thoughts accurately. This study adopted a qualitative method to develop themes arising from online forum discussions, using the words of autistic adults talking about how they experience and understand their self-harming behaviours. The analysis discovered that self-harming behaviours are used by autistic people as a way of coping with anxiety and depression and to relieve the build up of stress and sensory or mental overload that can otherwise lead to a meltdown. Repetitive behaviours such as stimming are also used to relieve the buildup of sensory over-stimulation and anxiety, but both stimming and meltdowns can also be self-harming behaviours if they cause tissue damage, and are believed to be childhood presentations which are stigmatised if expressed by an autistic adult. Many autistic adults find it hard to get help with self-harming behaviours because they are not taken seriously by professionals, as it is seen as part of autism and cannot be helped, or the professionals do not have enough knowledge of autism.

Community Member Views on Autism Intervention: Effects of Closeness to Autistic People with Intellectual Disabilities And Nonspeaking Autistic People.

Controversy regarding the neurodiversity movement (NDM), the social and medical models of disability, autism intervention goals, and causal attributions of disability contributes to divides in the autistic and autism communities. The present study investigates the views of autistic and non-autistic autistic and autism community members on these topics. We explored whether these views are shaped by having close relationships to autistic people with intellectual disabilities (ID) and nonspeaking autistic (NSA) people. A total of 504 autistic and autism community members (278 autistic, 226 non-autistic) completed an online survey about theoretical models and intervention goals. Participants reported whether they had one or more close relationships with NSA people, autistic people with ID, neither, or both. Overall, there was considerable consensus regarding desired intervention goals: normalization goals were generally opposed, while participants generally supported well-being, societal reform, supportive environment, and adaptive skill goals. While autistic participants reported less support for normalization and adaptive skills goals than non-autistic participants, they expressed somewhat more enthusiasm for societal reform and supportive environments than non-autistic people. Autistic people supported the NDM more and the medical model less than non-autistic people. Those close to autistic people with ID gave higher ratings to adaptive skill goals. On average, participants not close to autistic people with ID saw the challenges of those without ID as being slightly more due to environmental/social factors than the challenges of those with ID; there was no such statistical difference among those close to autistic people with ID. Further research investigating community views, with the inclusion of more autistic people with ID and NSA people themselves, is needed, but the results of this study suggest that the broader autistic and autism communities see NDM-consistent intervention goals as appropriate for all autistic people, including NSA people and those with ID. As autism interventions have often pursued unpopular normalization goals, this suggests directions for reform.

Understanding Emotional Dynamics in Autism Social Media Communities.

We extracted a sample of X' posts related to autism and used DistilBERT to assign one out of six emotions (sadness, joy, love, anger, fear, surprise) to each post. We have analyzed a total of 414,287 posts, 98,602 (23.8%) of those included the hashtag #ActuallyAutistic. The most common expressed emotion was joy, which was expressed in 52.5% of the posts, followed by sadness, identified in 28.6% of the posts. 12% of the posts expressed fear, 4.9% reflected anger, 1.1% showed love, and 0.9% expressed surprise. Posts tagged as #ActuallyAutistic showed less joy (27.1% vs. 60.4% in posts without this hashtag, p<0.001) and more sadness (52.7% vs. 21.1% in those without the hashtag, p<0.001). The use of the hashtag #ActuallyAutistic is associated with a different emotional tone, characterized by less joy and more sadness. These results suggest the need for greater support and acceptance towards the autistic community, both online and in society in general. Insights from our study can be valuable for policy makers, health, educational or other programmes aiming at enhancing well-being, inclusiveness, improve services, and create a more compassionate and understanding atmosphere for autistic people.

The process of co‐design for a new anxiety intervention for autistic children

AbstractBackgroundMental health difficulties are common for autistic people; however, almost no interventions have been co‐designed with the autistic community. Co‐design has the potential to add important insights from lived experience into intervention design, but there are currently limited examples of how rigorously to undertake this practice. This paper details a worked model of co‐design and its process, focussed on adapting an evidenced parent‐led intervention for non‐autistic child anxiety (HYC), to meet the needs of young autistic children. The aim is to provide an example of co‐design, integrating autistic, parental, academic, clinical, experience and expertise.MethodsUsing prior literature and theory, including Experience‐Based Co‐Design, we developed an iterative and collaborative process between the research team and an expert reference group (ERG). The research team comprised autistic and non‐autistic members. The ERG included parents (autistic and non‐autistic) of autistic children with anxiety problems, autistic adults with experience of anxiety problems, and clinicians with experience supporting autistic children with anxiety problems. The ERG and research team reviewed information from qualitative research interviews with autistic children with anxiety problems and their parents along with information from clinical experience and the academic literature to reach consensus on the adapted intervention design.ResultsThe creation of a truly co‐designed intervention that includes a neurodiversity‐affirmative perspective, alongside CBT techniques. With anxiety problems experienced by autistic children being framed by combining the impacts of being neurodivergent in a neurotypical world, developmental science and well known cognitive behavioural models of child‐anxiety.ConclusionCo‐design can help to integrate multiple perspectives and result in the creation of interventions that are potentially relevant and acceptable to autistic people, their family members, and clinicians.

Experiences of parenting for autistic children in Australia and Italy: a qualitative cross-cultural comparison.

Parents vary in their gradual adaptation to the demands of caring for an autistic child. Their experiences can be positive, negative, or a combination of both, depending on the severity of the cases and various personal and social factors. Cross-cultural comparisons can aid in understanding how contextual factors, such as the availability of social and health services, and cultural factors, such as family relationships and the distribution of care burden, may influence the caregiving experience. However, there is a limited amount of cross-cultural research on this topic, which is almost exclusively quantitative. From an ecocultural perspective, our interview-based study aimed to explore the experiences of Australian (15) and Italian (11) parents of autistic children living in their respective countries. The analysis identified three main themes. Life through autism, autism through life: coexisting with an unexpected life partner, Parenting autistic children: reorganization of parents' subjectivity and familiar dynamics, and The unseen side of disability: autism communities between inclusion and segregation. Our comparative approach reveals both commonalities and differences between the two groups of participants. The similarities support features previously identified in the literature: the emotional and physical burden on parents and the positive impact on parental identity. The differences relate to the diagnostic process, interactions with health professionals, the impact of autism on family dynamics and parental perspectives, and the role assigned to siblings. Despite facing similar challenges, these differences reveal how Italian and Australian parents articulate different understandings linked to social and cultural differences.

Marginalised or missed? The curious case of influential autistic self-advocates in England: introducing the 3i instrument

This article argues that the social policy influence of marginalised groups is at risk of being underestimated, in the scholarship, policy communities and wider society. It proposes the 3i instrument: a new, triangulated approach to measuring influence with a broader set of indicators than usually attempted. These indicators, which are designed to include influence in its early stages, are explored through a case study of autistic self-advocates in England. Surprisingly, the results show not just that autistic self-advocates but, through them, the wider autistic community, have more policy influence than they or others expect, but that influence is also being missed in its later stages, indicating that researcher bias may also be a complicating factor. While a single case of ‘missed’ influence is not sufficient to generalise to other contexts and groups, this research opens the door to a wider methodological discussion and reflexivity on the part of researchers.

Multiple Perspectives on How COVID-19 Affected Family, Educational, Clinical, &amp; Community Life in the Autistic Community

Abstract Date Presented 03/23/24 This paper will present the preliminary results of the qualitative research study and examine spatial and temporal experiences of autistic children, their caregivers, educators, and clinicians during the COVID-19 pandemic. Primary Author and Speaker: Svitlana Stremousova Additional Authors and Speakers: Mariamme Ibrahim, Mary Lawlor, Erna Blanche Contributing Authors: Brigid McInnes Connelly, Tuyet-Nhi Nguyen