Autism Experience Research Articles

Faithful presence: a practice of belonging with people experiencing profound autism

ABSTRACT This paper engages David Fitch’s idea of faithful presence with the lived experiences of autism to explore how the church can embody the concept of unity in diversity. To belong as God’s family with people considered the least among us begins with seeing them as persons, not projects. Next, the power differential in a giver-receiver relationship needs to be addressed. Then, following the lead of the Spirit into Christ’s presence, church members submit to one another mutually and equally, receiving each other as gifts of God. Finally, as the body of Christ, we tend to Christ in our shared life inside and outside the church. In the process, all in the body encounter Christ, who transforms our hearts towards loving one another, desiring to share each other’s burdens and joy, thus becoming one in Christ.

Chasing the conversation: Autistic experiences of speech perception.

Humans communicate primarily through spoken language and speech perception is a core function of the human auditory system. Among the autistic community, atypical sensory reactivity and social communication difficulties are pervasive, yet the research literature lacks in-depth self-report data on speech perception in this population. The present study aimed to elicit detailed first-person accounts of autistic individuals' abilities and difficulties perceiving the spoken word. Semi-structured interviews were conducted with nine autistic adults. The interview schedule addressed interviewees' experiences of speech perception, factors influencing those experiences, and responses to those experiences. Resulting interview transcripts underwent thematic analysis. The six-person study team included two autistic researchers, to reduce risk of neurotypical 'overshadowing' of autistic voices. Most interviewees reported pronounced difficulties perceiving speech in the presence of competing sounds. They emphasised that such listening difficulties are distinct from social difficulties, though the two can add and interact. Difficulties were of several varieties, ranging from powerful auditory distraction to drowning out of voices by continuous sounds. Contributing factors encompassed not only features of the soundscape but also non-acoustic factors such as multisensory processing and social cognition. Participants also identified compounding factors, such as lack of understanding of listening difficulties. Impacts were diverse and sometimes disabling, affecting socialising, emotions, fatigue, career, and self-image. A wide array of coping mechanisms was described. The first in-depth qualitative investigation of autistic speech-perception experiences has revealed diverse and widespread listening difficulties. These can combine with other internal, interpersonal, and societal factors to induce profound impacts. Lack of understanding of such listening difficulties - by the self, by communication partners, by institutions, and especially by clinicians - appears to be a crucial exacerbating factor. Many autistic adults have developed coping strategies to lessen speech-perception difficulties or mitigate their effects, and these are generally self-taught due to lack of clinical support. There is a need for carefully designed, adequately powered confirmatory research to verify, quantify, and disentangle the various forms of listening difficulty, preferably using large samples to explore heterogeneity. More immediate benefit might be obtained through development of self-help and clinical guidance materials, and by raising awareness of autistic listening experiences and needs, among the autistic community, communication partners, institutions, and clinicians.

Teaching social skill acquisition to adolescent students with autism: A systematic review of peer-mediated interventions published between 2010 and 2020

Many adolescent students with autism experience social communication challenges that can have a significant impact on their social, academic, and vocational outcomes. The transition from childhood to adolescence often intensifies these challenges. Peer-mediated instruction and intervention (PMII) is a type of peer-focused approach that involves the use of typically developing peers to deliver instruction to peers with disabilities within general education settings. Through several systematic reviews, a strong evidence base exists for the use of PMII for students with autism. However, these reviews have been limited to the inclusion of research involving children under nine years of age, participants with high functioning autism, studies that have used a single specific research design, or target only certain social skills. The current study provides a comprehensive review of studies published between 2010 and 2020 that used school-based PMII to target social outcomes for adolescent students with autism, without limiting inclusion to severity of autism diagnosis or the social skills targeted. This review synthesised the methodological features and participant characteristics of the included studies, investigated their most targeted dependent variables, evaluated research report quality, and identified current research limitations. Results showed that most studies targeted more than one dependent variable with social interactions and communication among the most popular. Evaluation confirmed that all included research achieved at least an adequate level of evidence rating. Several limitations were identified across the reviewed studies, including a lack of female participants, concentration of studies conducted within the United States, and a preference for lunch-time school-based intervention. Recommendations for overcoming such limitations in future research are explored.

Adults on the Autism Spectrum Face Significant Challenges Accessing Health Care Services

Autism Spectrum Disorder (ASD) is a neurodevelopmental condition characterized by difficulties with social skills, verbal and non-verbal communication, repetitive behaviours and atypical sensory processing. Individuals on the autism spectrum face a higher prevalence of health conditions and have a higher mortality rate than the general population. There is a critical need to understand adults’ experiences on the autism spectrum when accessing health care services to understand how to improve accessibility to health care for these individuals. The purpose of this scoping review was to investigate how adults on the autism spectrum access and experience health care services. Four databases, including Embase, MEDLINE, CINAHL, and PsycInfo, were systematically searched for literature exploring how individuals on the autism spectrum access and experience health care. Results were extracted and categorized into five determinants based on the accessibility framework described by Levesque et al. (2013). Results indicated adults on the autism spectrum experience numerous barriers when accessing health care services. The dimension of access most frequently cited was the appropriateness of care, followed by the acceptability of care. It is essential to explore access as it is often conceptualized as the availability and affordability of services; however, results of this study indicate the broader experience of quality care provision and acceptance of the individual are important in understanding the complex experience individuals on the autism spectrum face. Based on these findings, there is a need to provide comprehensive education and clinical practice guidelines for health care providers to help reduce barriers to providing appropriate care for adults on the autism spectrum. Efforts to destigmatize intrapersonal and extra-personal perceptions of individuals on the autism spectrum will help overcome the barriers that affect care acceptability. Further research must understand how to design and implement strategies to maximize health service access for adults on the autism spectrum.

Early Life Experiences Moderate the Relationship Between Genetic Risk of Autism and Current and Lifetime Mental Health.

Although individuals with autism are at greater risk of mental health challenges than others, we know little about the relationship between the mental health of older adults (50+) and autism because they are less likely to be diagnosed. Identifying the risk and protective factors that are associated with mental health can increase educational awareness, inform clinical practice, and provide information to help diagnose and treat older adults with autism. This study used longitudinal panel data of the 2008–2016 waves of the Health and Retirement Study. It estimated individual random-effect models by interacting a genetic propensity toward autism and early life experiences to test whether the latter has a moderating effect on the relationships between genetics and the Center for Epidemiologic Studies Depression (CES-D) score, self-reported depression, and history of psychiatric problems. Results suggest that individuals with a higher genetic propensity for autism are less likely to develop psychiatric problems if they report a positive maternal relationship early in life. Further, a combined effect of police encounters early in life and genetic risk for autism is associated with higher CES-D scores, increased odds of self-reported depression, and a history of psychiatric problems. Clinical applications of these findings include the need to establish and support high-quality relationships by addressing both child and caregiver needs. Further, these findings support the need to design and implement proactive interventions to teach police and autistic individuals how to successfully navigate these encounters.

Social attention in anorexia nervosa and autism spectrum disorder: Role of social motivation.

Research suggests a relationship between anorexia nervosa and autism spectrum disorder. The aim of the current study was to examine social attention in anorexia nervosa and autism spectrum disorder compared with age- and sex-matched typically developing groups, and to examine whether lowered social motivation could explain reductions in social attention across the two disorders. Participants’ eye movements were tracked while watching a dynamic social scene. The proportion of fixation duration to faces, bodies and non-social areas of interest were compared across groups. Participants with autism spectrum disorder looked at faces significantly less often than controls, however, there were no differences between anorexia nervosa and controls in attention to faces. Typically developing -normed z-scores indicated that attention to faces showed the greatest deviation from normative data compared with body or non-social areas of interest in both autism spectrum disorder and anorexia nervosa, however, differences were larger in autism spectrum disorder than in anorexia nervosa. Social motivation scores did not predict attention to faces in either autism spectrum disorder or anorexia nervosa. Our results do not support the hypothesis that differences in social motivation underlie reduced social attention in both anorexia nervosa and autism spectrum disorder.Lay abstractResearch suggests a relationship between autism and anorexia nervosa. For example, rigid and inflexible behaviour, a preference for routine and social difficulties are seen in both conditions. In this study, we examined whether people with anorexia and people with autism show similarities in social attention (where they look while engaging in social interactions or watching a scene with people interacting). This could help us understand why people with anorexia and autism experience difficulties in social situations. Participants with either anorexia or autism, as well as participants with no mental health problems watched a video of a social scene while we recorded which parts of the scene they looked at with an eye-tracker. Participants also completed questionnaires to assess characteristics of autism. We found that autistic participants looked at faces less than typically developing participants. However, participants with anorexia did not show a similar reduction in attention to faces, contrary to our predictions. Autistic features were not related to attention in either group. The results suggest that autistic people may miss important social cues (like facial expressions), potentially contributing to social difficulties. However, this mechanism does not appear explain social difficulties in people with anorexia.

Evidence of increasing recorded diagnosis of autism spectrum disorders in Wales, UK: An e-cohort study.

Estimates place the prevalence of autism spectrum disorders (autism) at around 1% in the population. New services for adult diagnosis have been set up in Wales, UK, at a time of rising awareness of the spectrum of autism experiences; however, no studies have examined adult autism prevalence in Wales. In this study, we used an anonymised e-cohort comprised of healthcare record data to produce all-age estimates of prevalence and incidence of recorded autism for the years 2001–2016. We found the overall prevalence rate of autism in healthcare records was 0.51%. The number of new-recorded cases of autism increased from 0.188 per 1000 person-years in 2001 to 0.644 per 1000 person-years in 2016. The estimate of 0.51% prevalence in the population is lower than suggested by population survey and cohort studies study methodologies, but comparable to other administrative record study estimates. Rates of new incident diagnoses of autism saw a >150% increase in the years 2008–2016, with a trend towards more diagnoses in those aged over 35 years and an eightfold increase in diagnoses in women from 2000 to 2016. This study suggests that while the number of people being diagnosed with autism is increasing, many are still unrecognised by healthcare services.Lay abstractAutism spectrum disorders (autism) are thought to be relatively common, with analyses estimating 1% in the population could meet diagnostic criteria. New services for adult diagnosis have been set up in Wales, UK; however, no studies have examined for the proportion of adults with autism in Wales. In this study, we take anonymised healthcare record data from more than 3.6 million people to produce a national estimate of recorded autism diagnoses. We found the overall prevalence rate of autism in healthcare records was 0.51%. The number of new-recorded cases of autism increased from 0.188 per 1000 person-years in 2001 to 0.644 per 1000 person-years in 2016. The estimate of 0.51% prevalence in the population is lower than suggested by population survey and cohort studies, but comparable to other administrative records. From 2001 to 2016, the number of autism services for adults has increased, and autism is more widely known in society, while concurrently in healthcare records, there was a >150% increase autism diagnoses in the years 2008–2016. An increasing number of diagnoses were among women and those aged over 35 years. This study suggests that while the number of people being diagnosed with autism is increasing, many are still unrecognised by healthcare services.

Trajectories of adverse childhood experiences among children with autism

BackgroundChildren with autism experience more adverse childhood experiences (ACEs) compared to their peers. Little is known about how the timing of ACES may be associated with the timing of autism diagnosis, which types of children experience the most ACEs, or how one’s ACE trajectory affects current well-being. This study aims to address these gaps. MethodsAn online survey was distributed to parents of children with autism (N = 902). Group-based trajectory models were created and analyzed using multiple regression techniques. ResultsThree ACE trajectory groups were identified, with children in the highest ACE group diagnosed at a significantly later age and significantly more likely to be Hispanic, less resourced, and female compared to their peers. Children in the high ACE group were also significantly more likely to report poorer current well-being compared to their peers. ConclusionInterventions to reduce family stress around the time of autism diagnosis that target high-risk groups are critical for improving well-being in this population.

Greater Social Interest Between Autistic and Non-autistic Conversation Partners Following Autism Acceptance Training for Non-autistic People.

Bi-directional differences in social communication and behavior can contribute to poor interactions between autistic and non-autistic (NA) people, which in turn may reduce social opportunities for autistic adults and contribute to poor outcomes. Historically, interventions to improve social interaction in autism have focused on altering the behaviors of autistic people and have ignored the role of NA people. Recent efforts to improve autism understanding among NA adults via training have resulted in more favorable views toward autistic people, yet it remains unknown whether these benefits extend to real-world interactions between autistic and NA people. The current study explores whether a brief autism acceptance training (AAT) program can improve social interactions between autistic and NA adults. Thirty-nine NA males were randomly assigned to complete AAT or a no-training control condition, then participated in a 5-min unstructured conversation with an unfamiliar autistic male (n = 39). Following the conversation, participants rated their perceptions of interaction quality, first impressions of their partner, and their interest in future interactions with their partner. In dyads where the NA individual completed AAT, both the autistic and NA person endorsed greater future interest in hanging out with their partner relative to dyads in which the NA adult did not complete AAT. However, other social interaction outcomes, including ratings of interaction quality and first impressions of autistic partners, largely did not differ between training and no-training conditions, and assessments of the interaction were largely unrelated for autistic and NA partners within dyads. Results also indicated that NA participants, but not autistic participants, demonstrated substantial correspondence between evaluations of their partner and the interaction, suggesting that autistic adults may place less weight on trait judgments when assessing the quality of an interaction. These findings suggest that the brief AAT for NA adults used in this study may increase mutual social interest in real-world interactions between NA and autistic adults, but more systematic changes are likely needed to bridge divides between these individuals. Future work with larger, more diverse samples is recommended to further explore whether interventions targeting NA adults are beneficial for improving autistic experiences within NA social environments.

Autism, Doxology, and the Nature of Christian Worship

Brian Brock’s Wondrously Wounded teaches us to approach “disability” through the lens of doxology. The first section of this response argues that Brock’s doxological approach combines and expands (rather than rejects) the previously dominant inclusivity and prophetic approaches. I then move on to consider the leitmotif of praise and worship for disability theology. The remainder of this paper puts the doxological approach to constructive use by considering what the sensory and communicative differences that characterize autistic experience might reveal about the nature of Christian worship. It is argued that the interwoven sensory and social differences that characterize autism reveal how the Spirit illuminates the very materiality of the world. The Spirit thereby uses our doxologies to enable all human beings to perceive and respond to God and establish a world in common, the Kingdom of God.

Autistic autobiography and hermeneutical injustice

AbstractThis paper examines epistemic injustice in knowledge production concerning autism. Its aim is to further our understanding of the distinctive shapes of the kinds of epistemic injustices against autists. The paper shows how Ian Hacking’s work on autistic autobiography brings into view a form of hermeneutical injustice that autists endure with respect to their firsthand accounts of their experiences of autism. It explores how understanding the distinctive shape of this hermeneutical injustice can help us further appreciate dangers and harms of using interpretive frameworks for autistic experience that neglect autists’ own contributions to the formation of words and concepts for capturing their experiences. In particular, the paper argues that even when autists are included in knowledge production concerning autistic experience, they remain vulnerable to forms of hermeneutical marginalization that can stifle the coming into being of autistic experience.

A qualitative exploration of autistic mothers' experiences II: Childbirth and postnatal experiences.

Navigating childbirth and the postnatal period may pose additional challenges for autistic people, who can face communication and sensory barriers to accessing healthcare. However, research exploring autistic experiences of parenthood is scarce. Semi-structured interviews were conducted with 21 autistic and 25 non-autistic women 2–3 months after giving birth. Interviews concerned experiences of childbirth, postnatal healthcare and parenting. Thematic analysis revealed that sensory aspects of childbirth could be challenging for autistic participants; participants highlighted the need for sensory adjustments. Autistic participants stressed the importance of clear, direct communication from professionals during the birth. During childbirth and the postnatal period, autistic participants sometimes felt that professionals lacked knowledge of autism and this could hinder receiving appropriate adjustments. Both groups reported several parenting strengths and challenges. The findings indicate ways in which childbirth and postnatal healthcare can be improved for autistic people, including sensory and communication adjustments. They also indicate a need for greater autism-related training for professionals involved in childbirth and postnatal care.Lay abstractVery little research has looked at how autistic people experience childbirth and the first few months of parenthood. We interviewed 21 autistic and 25 non-autistic women 2–3 months after their baby was born, to find out how they experienced giving birth and being a parent. Some autistic participants found sensory aspects of giving birth difficult, such as noise and being touched. They also wanted healthcare professionals to give them clear information while giving birth. Participants sometimes thought that healthcare professionals did not know enough about autism. Autistic and non-autistic participants both found parenthood difficult at times and autistic parents sometimes had extra difficulties, such as with planning and organising. Autistic participants also felt good at understanding their baby’s needs. This research suggests that autistic people would benefit from changes to childbirth and postnatal healthcare such as being communicated with more clearly. It also indicates that healthcare professionals should receive more training about autism.

Camouflaging in autism spectrum disorder: Examining the roles of sex, gender identity, and diagnostic timing.

Camouflaging in autism spectrum disorder refers to behaviors and/or strategies that mask the presentation of autism spectrum disorder features in social contexts in order to appear "non-autistic" (Attwood, 2007). Camouflaging modifies the behavioral presentation of core autism spectrum disorder features (e.g. social and communication differences), but the underlying autistic profile is unaffected, yielding a mismatch between external observable features and the internal lived experience of autism. Camouflaging could be an important factor in later diagnosis of individuals without co-occurring intellectual disability, especially among those designated female sex at birth. Little research to date has examined how gender identity impacts camouflaging, however. Furthermore, no study has compared groups that differ in diagnostic timing to directly investigate if later-diagnosed individuals show elevated camouflaging relative to those receiving an earlier diagnosis. We used the Camouflaging Autistic Traits Questionnaire subscales (Assimilation, Compensation, and Masking) and investigated the roles of sex, gender identity (gender diverse vs cisgender), and diagnostic timing (childhood/adolescent-diagnosed vs adult-diagnosed), and the interactions of these factors, in autistic adults (N = 502; ages 18-49 years). Main effects of sex, gender identity, and diagnostic timing were revealed. Autistic females reported more camouflaging across all three Camouflaging Autistic Traits Questionnaire subscales compared to males. Gender diverse adults reported elevated camouflaging on the Compensation subscale compared to cisgender adults. Adulthood-diagnosed individuals reported elevated Assimilation and Compensation compared to childhood/adolescence-diagnosed individuals. We discuss how the aspects of camouflaging may have unique implications for later diagnostic timing and for the intersection of neurodiversity and gender diversity.

Longitudinal psychometric evaluation of the developmental disorder parenting stressor index with Japanese parents of children with autism.

Parents of children with autism experience high rates of parenting stress. Assessing parenting stress in them has crucial clinical implications because increased parental stress is associated with psychological disorders and personal distress, which can result in worse child-parent relationships. Theorists have proposed that a person's cognitive appraisal determines whether or not a situation or an encounter is personally stressful. However, prior scales merely measure the outcomes of parental stress as a stress response: little the scales were designed to assess events and cognitive appraisal-related parenting stressors of parents of children with autism. We investigated whether a new index for assessing parenting stressors-the Developmental Disorder Parenting Stressor Index is a valid measure to assess parenting stressors of parents of children with autism using longitudinal online surveys at three times. Participants were 212 Japanese parents of children with autism aged 2-18 years who completed the Developmental Disorder Parenting Stressor Index and measures of autism symptoms and stress response . Overall, the findings indicated that the Developmental Disorder Parenting Stressor Index can be reliably used to measure both experiences and cognitive appraisal of parenting stressors among parents of children with autism. Moreover, the Developmental Disorder Parenting Stressor Index has several advantages and is a valuable measurement tool to be able to evaluate parenting stressors in clinical settings; Developmental Disorder Parenting Stressor Index is shorter, easier to complete, and can evaluate both viewpoints of parenting stressors.

OT Students as Near-Peer Facilitators of a Soft-Skills Intervention Program for Young Adults With Autism

Abstract Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations. Young adults with autism experience postsecondary challenges transitioning to work. This study extends work on a previously validated manualized soft-skills group intervention by examining the feasibility of having OT fieldwork students deliver the intervention as near-peer facilitators. Results include gains in social and adaptive functioning. The use of fieldwork students as group facilitators shows potential to elicit additional positive change in this population. Primary Author and Speaker: Annemarie Connor Additional Authors and Speakers: Sarah Fabrizi Contributing Authors: Amy Nasamran, Connie Sung

The Quality of Life and Burden Among Caregivers of Children with Autism and Caregiver of Children Without Disability

The aim of the research was to study the Quality of Life and Burden among caregivers of children with Autism and caregivers of children without disability. To see the same a comparative study was undertaken using Parental Stress Scale given by Berry and Jones, a self-report measure which was to study caregiver burden and WHOQOL-BREF to study the Quality of Life among the caregivers. The results show that caregivers of children with autism experience higher level of burden and lower level of quality of life on all the four domains of quality of life as compared to the caregivers of children without disability. These findings indicate that different effect as a consequence of different childhood conditions and also the need to provide adequate parental support when providing intervention to their children with disabilities.

“Unheard minds, again and again”: autistic insider perspectives and theory of mind

Purpose The Theory of Mind (ToM) deficit hypothesis is a dominant construct used to explain the social and communication difficulties observed in autistic individuals. This hypothesis was based on an interpretation of autistic individuals’ observable behavior, not based on insider accounts. Insider perspectives still remain mostly absent in research on ToM. We aimed to gain an understanding of the relevance and applicability of ToM by examining writings of autistic bloggers. Methods As part of a series of studies examining insider autistic perspectives, we used a descriptive qualitative approach and conducted a thematic analysis of content scraped from 40 blogs written by autistic authors. Results The blogs offered important perspectives on the applicability of ToM to autistic individuals. The primary themes reflected empirical contradictions to ToM, explicit critiques of ToM, and pointed to ToM as a source of harm. Conclusion The insider perspectives call into question the ways clinicians, researchers, and society use ToM to understand autistic individuals and point to the harmful effects of ToM on autistic lived experience. These findings emphasize the importance of attending to autistic people in building a body of knowledge that better reflects autistic experiences and promotes more effective and ethical clinical practices. Implications for Rehabilitation Our paper indicates the need for a timely and thorough re-evaluation of the ToM deficit hypothesis of autism. Autistic insider perspectives not only empirically demonstrate and explicitly critique the ToM deficit hypothesis, but reveal the hypothesis as harmful to autistic experience by reinforcing negative stereotypes, prompting acts of discrimination, and perpetuating autistic insider’s exclusion from the research concerning them. Given the varied experiences of autistic people and the harmful impacts of the ToM deficit hypothesis, it is safer for clinicians and researchers to presume a presence of ToM and empathy, before they presume a deficit in autistic individuals. Autistic insiders are able, eager, and deserve to be included in the research and practices that concern them.

Testing the Structural Validity of the Self-Stigma Scale in Relatives of People with Autism in the Spanish Context.

Sometimes, relatives of children with autism experience feelings of guilt, abandonment and devaluation, as they tend to see themselves as the cause of their children’s illness. This causes social isolation and psychological discomfort. However, there are no scales that assess self-stigma. Therefore, the aim of the study is to show evidence of the validity and reliability of the Self-Stigma Scale in Relatives of People with Mental Illness in the Spanish context in relation to autism. A total of 287 progenitors participated in the study. For the validation and adaptation process, three confirmatory factor analyses, analysis of invariance across gender, reliability analysis and temporal stability, were carried out. The results revealed that the factor structure of the questionnaire was adequate, showing adequate levels of reliability.

Perspectives and Experiences of Autistic Multilingual Adults: A Qualitative Analysis.

The combined experience of autism and bilingualism is poorly understood, leading to poor support for autistic people in multilingual environments or those interested in languages. While most available studies focus on the language and cognitive profiles of autistic bilinguals, or on the experiences of parents, little is known about the lived experiences of autistic multilinguals. To address this question, this study examined the impact of autism and multilingualism on the lives of 54 autistic multilingual adults who completed an online survey assessing the profiles of autistic bi- and multilinguals. We conducted a thematic analysis of responses to the survey's open-ended questions to explore motivations for learning languages and the perceived benefits of being both autistic and multilingual. There was a wide range of language profiles in the sample, with various levels of proficiency, ages of acquisition, and learning environments. Respondents felt that being autistic can both positively and negatively influence language learning. They reported various motivating factors for the acquisition of multiple languages, including social aspects and a predisposition for language learning. Respondents reported many benefits of multilingualism, such as educational, employment, or leisure opportunities; social skills and understanding of other people; self-confidence in their own abilities; and relationships with family, friends, and the worldwide autistic community. Unlike previous work with autistic multilinguals involving case studies, the larger sample involved here offers valuable insight into the profiles and experiences of this overlooked population. Importantly, autistic people can experience numerous benefits from multilingualism. These findings will have implications for language education practices as well as for multilingual families and the practitioners who support them. Why was this study done?: We wanted to understand what it feels like to be both autistic and multilingual, in a world where it is often assumed that both cannot go together. The combined experience of autism and bilingualism is poorly understood. This leads to poor support for autistic people in bilingual environments or for those interested in languages. Most studies available focus on the language and mental abilities of autistic bilinguals, or on the experiences of parents. However, very few studies focus on the lived experiences of autistic multilinguals themselves.What was the purpose of this study?: The purpose of this study was to understand the experiences of autistic multilingual adults. We focused on their learning motivations and the perceived benefits of being autistic and multilingual.What did the researchers do?: Fifty-four autistic multilingual adults completed an online questionnaire designed for autistic bi- and multilinguals. The questionnaire included questions about the respondents' language history and language profiles. There were also open-ended questions about the respondents' motivations for learning languages, and their general experience of being both autistic and multilingual. We analyzed and summarized the responses to these open-ended questions to understand the experience of autistic multilingual adults.What were the results of the study?: Our sample had a diverse range of language profiles and experiences. Respondents thought that autism could be both an advantage and a disadvantage for language learning. They reported a range of motivations for language learning, including a predisposition for language learning. They considered relationships as both a motivation to learn languages and a benefit of multilingualism. Respondents thought that being multilingual had brought them many opportunities for leisure, travels, education, and employment. They considered that being multilingual had improved their self-confidence. They also thought that being multilingual had increased their awareness and understanding of autism, allowing them to connect with the wider autistic population.What do these findings add to what was already known?: Previous research with autistic multilinguals involved only one or two participants. The larger group of autistic multilinguals involved in this study offers valuable insight into the lived experiences of this overlooked population.What are potential weaknesses in the study?: The online questionnaire was not originally designed to collect in-depth data on lived experiences. This means that the questions included very few prompts: respondents were able to discuss the aspects of their experience that were the most important to them. The absence of specific topics in the results does not mean that they are not experienced, but simply that the participants did not spontaneously mention them. Future research should build upon our findings and focus on specific topics, such as learning environments or opportunities.How will these findings help autistic adults now or in the future?: These findings will help autistic adults by highlighting the diversity and richness of their language profiles, abilities, and experiences. This will prompt families, educators, and practitioners to better support and include autistic people in multilingual environments or those interested in languages.

A hard slog road: Aboriginal and Torres Strait Islander women talk about loving and supporting their autistic children

This article draws on the first qualitative research on lived experiences of autism in Aboriginal and Torres Strait Islander communities in Australia. Twelve women supporting 16 autistic children living in remote, regional and urban areas of Australia participated in a semi-structured interview. Through thematic analysis, we identified four focal themes in women’s conceptualisation of the practical work of mothering autistic children. These are (i) navigating a complex autism system to ‘achieve’ diagnosis and connect to culturally-safe services and supports; (ii) helping children to learn to live in the big world by engaging in everyday care and enhancing capacities; (iii) protecting children by keeping them safe, dealing with stigma and respecting individuality and; (iv) asserting family belonging by emphasising children’s strengths, encouraging extended family relationships and advocating for others. Listening to these marginalised voices is vital to establishing a participatory research agenda in a field that has received inadequate attention. Points of interest This is the first research on lived experiences of autism in Aboriginal and Torres Strait Islander communities in Australia. Twelve women from remote, regional and urban areas spoke about their experiences of loving and supporting their autistic children. Women talked about the practical work of mothering their autistic children including achieving autism diagnosis, trying to access culturally safe services and supports, undertaking everyday care needs and enhancing capacities and abilities. Women emphasised children’s strengths and their belonging in community; they were very concerned with protecting them and keeping them safe in the context of intersecting racist and ableist attitudes. More participatory research on autism within Aboriginal and Torres Strait Islander communities is urgently needed.