Pub Date : 2026-01-01Epub Date: 2025-09-09DOI: 10.1177/13623613251369908
Isabelle Courcy, Noémie Cusson, Nuria Jeanneret
The aim of this study is to analyze egocentric social networks of 31 autistic adults in Québec (Canada). We examined the composition of their proximal personal support network and the role of support shared among autistic peers. A mixed method analysis was used. An egocentric network questionnaire that included qualitative prompts was conducted to gather participants' interpretations and reference systems, facilitating an understanding of networks' multidimensional aspect. A reflexive thematic analysis was conducted with a subset of the data from the qualitative prompts. Three main themes were identified: (1) interference in social interactions, (2) mutual acknowledgment, and (3) social engagement in the community. Most participants (n = 21) mentioned autistic peers, but although these peers may have provided support, participants rarely identified them as being part of their proximal personal support network. Results nevertheless highlight the importance of peer support for several participants, which can refer to the concept of "weak ties," but they differ from it by the exchanges of emotional support, which are normally expected from "strong" ties.Lay abstractSocial support is recognized as an important predictor of quality of life in autistic and neurodivergent people. However, few studies have explored in detail the composition of support networks in autistic adults. Moreover, research on social networks in the field of autism has mainly focused on the support networks of experts and parents. This article presents the results of a study that analyzed the composition of the support network of 31 autistic adults and examined the role of autistic peer support in their network. Interviews were conducted with the participants. Most of them (n = 21) mentioned autistic peers in their social network. Although these peers provided unique types of support, participants rarely identified them as close friends or relatives. Nevertheless, the results underline the importance of peer support for participants, which often presented itself as empathetic listening, the sharing of advice to deal with everyday life issues and company for recreational activities. This study shows that we should not underestimate the support that can be provided by people who share a common experience, even if they are not considered close friends. It paves the way to thinking about how communities and professionals, such as social workers and educators, can support opportunities and facilitate spaces that foster peer support.
{"title":"Nor weak ties, nor strong ties: Personal support networks and relations between autistic peers.","authors":"Isabelle Courcy, Noémie Cusson, Nuria Jeanneret","doi":"10.1177/13623613251369908","DOIUrl":"10.1177/13623613251369908","url":null,"abstract":"<p><p>The aim of this study is to analyze egocentric social networks of 31 autistic adults in Québec (Canada). We examined the composition of their proximal personal support network and the role of support shared among autistic peers. A mixed method analysis was used. An egocentric network questionnaire that included qualitative prompts was conducted to gather participants' interpretations and reference systems, facilitating an understanding of networks' multidimensional aspect. A reflexive thematic analysis was conducted with a subset of the data from the qualitative prompts. Three main themes were identified: (1) interference in social interactions, (2) mutual acknowledgment, and (3) social engagement in the community. Most participants (<i>n</i> = 21) mentioned autistic peers, but although these peers may have provided support, participants rarely identified them as being part of their proximal personal support network. Results nevertheless highlight the importance of peer support for several participants, which can refer to the concept of \"weak ties,\" but they differ from it by the exchanges of emotional support, which are normally expected from \"strong\" ties.Lay abstractSocial support is recognized as an important predictor of quality of life in autistic and neurodivergent people. However, few studies have explored in detail the composition of support networks in autistic adults. Moreover, research on social networks in the field of autism has mainly focused on the support networks of experts and parents. This article presents the results of a study that analyzed the composition of the support network of 31 autistic adults and examined the role of autistic peer support in their network. Interviews were conducted with the participants. Most of them (<i>n</i> = 21) mentioned autistic peers in their social network. Although these peers provided unique types of support, participants rarely identified them as close friends or relatives. Nevertheless, the results underline the importance of peer support for participants, which often presented itself as empathetic listening, the sharing of advice to deal with everyday life issues and company for recreational activities. This study shows that we should not underestimate the support that can be provided by people who share a common experience, even if they are not considered close friends. It paves the way to thinking about how communities and professionals, such as social workers and educators, can support opportunities and facilitate spaces that foster peer support.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"97-110"},"PeriodicalIF":5.6,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12717286/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145028878","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-01Epub Date: 2025-10-30DOI: 10.1177/13623613251379945
Jiedi Lei, Juliette Attwood, Ailsa Russell
<p><p>Around 50% of autistic adults meet diagnostic criteria for social anxiety disorder based on self-report questionnaires. Among non-autistic adults with social anxiety, distorted negative self-imagery in social situations stemming from fear of negative evaluation from observers can be corrected in cognitive therapy via video feedback. However, the role of social imagery in the maintenance of social anxiety has not been explored in autistic adults. This study examined in 62 autistic adults: (1) quality of social imagery elicited during social situations; (2) how image qualities were related to self-reported levels of social anxiety and fear of negative evaluation when accounting for co-occurring generalised anxiety. Many autistic adults reported social imagery from a field (i.e., looking through one's own eyes) rather than observer perspective. Using response surface analysis (RSA), autistic adults wanted to escape from/avoid social imagery and found them more upsetting when social anxiety was greater than fear of negative evaluation from others. Social imagery may be linked to autistic adults' somatic and sensory responses related to social anxiety rather than cognitive worries associated with fear of negative evaluation from others in social situations. Future studies can explore how qualitative differences in social imagery may influence maintenance of social anxiety and treatment efficacy in autistic and non-autistic adults over time.Lay abstractMany autistic adults experience social anxiety, which can negatively impact on one's quality of life and increase risk for developing other mental health difficulties if left untreated. Current treatment for social anxiety involves supporting individuals to identify their worries in social situations and explore how focusing on one's worries about being judged by others might generate an unhelpful and inaccurate negative image of oneself in social situations. In treatment, individuals use video feedback to look for differences between how they think they might come across to others, versus how they actually come across to others in conversation. Correcting any overly negative and unhelpful images of oneself in social situations is a key step in treatment for social anxiety. To date, little is known about whether autistic adults also generate negative images of oneself in social situations, and whether these images are related to one's worries about being judged by others. In this study, we interviewed 62 autistic adults and asked them to generate images about relaxed and social situations. Autistic adults found images generated about being in a social situation to be more upsetting and anxiety inducing, less controllable and wanted to escape from/avoid such images. Negative aspects of social images were more related to general feelings of social anxiety rather than specific worries about being perceived negatively by others. We propose that autistic adults may draw on bodily sensations and sensory
{"title":"Exploring the suitability of the Clark and Wells (1995) model of social anxiety in autistic adults: The role of mental imagery and fear of negative evaluation.","authors":"Jiedi Lei, Juliette Attwood, Ailsa Russell","doi":"10.1177/13623613251379945","DOIUrl":"10.1177/13623613251379945","url":null,"abstract":"<p><p>Around 50% of autistic adults meet diagnostic criteria for social anxiety disorder based on self-report questionnaires. Among non-autistic adults with social anxiety, distorted negative self-imagery in social situations stemming from fear of negative evaluation from observers can be corrected in cognitive therapy via video feedback. However, the role of social imagery in the maintenance of social anxiety has not been explored in autistic adults. This study examined in 62 autistic adults: (1) quality of social imagery elicited during social situations; (2) how image qualities were related to self-reported levels of social anxiety and fear of negative evaluation when accounting for co-occurring generalised anxiety. Many autistic adults reported social imagery from a field (i.e., looking through one's own eyes) rather than observer perspective. Using response surface analysis (RSA), autistic adults wanted to escape from/avoid social imagery and found them more upsetting when social anxiety was greater than fear of negative evaluation from others. Social imagery may be linked to autistic adults' somatic and sensory responses related to social anxiety rather than cognitive worries associated with fear of negative evaluation from others in social situations. Future studies can explore how qualitative differences in social imagery may influence maintenance of social anxiety and treatment efficacy in autistic and non-autistic adults over time.Lay abstractMany autistic adults experience social anxiety, which can negatively impact on one's quality of life and increase risk for developing other mental health difficulties if left untreated. Current treatment for social anxiety involves supporting individuals to identify their worries in social situations and explore how focusing on one's worries about being judged by others might generate an unhelpful and inaccurate negative image of oneself in social situations. In treatment, individuals use video feedback to look for differences between how they think they might come across to others, versus how they actually come across to others in conversation. Correcting any overly negative and unhelpful images of oneself in social situations is a key step in treatment for social anxiety. To date, little is known about whether autistic adults also generate negative images of oneself in social situations, and whether these images are related to one's worries about being judged by others. In this study, we interviewed 62 autistic adults and asked them to generate images about relaxed and social situations. Autistic adults found images generated about being in a social situation to be more upsetting and anxiety inducing, less controllable and wanted to escape from/avoid such images. Negative aspects of social images were more related to general feelings of social anxiety rather than specific worries about being perceived negatively by others. We propose that autistic adults may draw on bodily sensations and sensory ","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"228-244"},"PeriodicalIF":5.6,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12717292/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145407980","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-01Epub Date: 2025-10-30DOI: 10.1177/13623613251379920
Aimilia Kallitsounaki, Matthew C Fysh, David M Williams, Lauren Spinner, Eilis Kennedy
<p><p>In recent years, referrals of youth to specialised gender services have risen sharply, with ~11% of these youth diagnosed as autistic compared with a general population rate of ~1%. In two preregistered studies, we addressed this insufficiently understood intersection. In Study 1, we examined the number and developmental trajectory of autism traits in autistic and nonautistic gender clinic-referred and cisgender youth (aged 7-16 years) using both screening measures (Autism-Spectrum Quotient Children's Version and Autism-Spectrum Quotient Adolescent Version, Social Communication Questionnaire-Lifetime) and diagnostic tools (Autism Diagnostic Interview-Revised, Brief Observation of Symptoms of Autism). In Study 2, we examined autism traits among the caregivers of participants from each group using the Autism-Spectrum Quotient Adolescent Version. Study 1 results showed the autism phenotype in autistic gender clinic-referred youth closely resembled that of their cisgender autistic peers. In addition, after addressing methodological limitations in previous research, we found no evidence of elevated autism traits in nonautistic gender clinic-referred youth, challenging findings of some earlier studies. Study 2 provided evidence of familial aggregation of both autism traits and diagnoses among caregivers of both autistic gender clinic-referred and cisgender participants. Taken together, these findings challenge the hypothesis that autism in gender-diverse youth is merely a 'phenomimic' of autism and provide valuable clinical insights into the presentation of autism in this population.Lay abstractIn recent years, more young people have been referred to specialised gender clinics for support with their gender identity. Interestingly, about 11% of these young people are also diagnosed with autism-much higher than the general population rate of only around 1%. This overlap has raised important questions about how autism and gender diversity are related, and even whether autism traits in gender-diverse people with an autism diagnosis really reflect autism. In this research, we carried out two studies to understand this link better. In the first study, we looked at autism traits in gender-diverse children and adolescents aged 7-16 years who were referred to a gender clinic for issues with their gender identity. We compared them with both autistic and nonautistic children who were not referred to gender services. We used several standard tools to assess autism-related traits, including both questionnaires and clinical interviews. We found that gender-diverse youth who were also autistic showed similar patterns of autism traits as cisgender autistic children who were not exploring their gender. Importantly, nonautistic gender-diverse youth did not show unusually high levels of autism traits, which challenges some earlier studies that suggested they might. In the second study, we explored autism traits in the caregivers (mostly mothers) of the young people
{"title":"Behavioural phenotypes of autism in autistic and nonautistic gender clinic-referred youth and their caregivers.","authors":"Aimilia Kallitsounaki, Matthew C Fysh, David M Williams, Lauren Spinner, Eilis Kennedy","doi":"10.1177/13623613251379920","DOIUrl":"10.1177/13623613251379920","url":null,"abstract":"<p><p>In recent years, referrals of youth to specialised gender services have risen sharply, with ~11% of these youth diagnosed as autistic compared with a general population rate of ~1%. In two preregistered studies, we addressed this insufficiently understood intersection. In Study 1, we examined the number and developmental trajectory of autism traits in autistic and nonautistic gender clinic-referred and cisgender youth (aged 7-16 years) using both screening measures (Autism-Spectrum Quotient Children's Version and Autism-Spectrum Quotient Adolescent Version, Social Communication Questionnaire-Lifetime) and diagnostic tools (Autism Diagnostic Interview-Revised, Brief Observation of Symptoms of Autism). In Study 2, we examined autism traits among the caregivers of participants from each group using the Autism-Spectrum Quotient Adolescent Version. Study 1 results showed the autism phenotype in autistic gender clinic-referred youth closely resembled that of their cisgender autistic peers. In addition, after addressing methodological limitations in previous research, we found no evidence of elevated autism traits in nonautistic gender clinic-referred youth, challenging findings of some earlier studies. Study 2 provided evidence of familial aggregation of both autism traits and diagnoses among caregivers of both autistic gender clinic-referred and cisgender participants. Taken together, these findings challenge the hypothesis that autism in gender-diverse youth is merely a 'phenomimic' of autism and provide valuable clinical insights into the presentation of autism in this population.Lay abstractIn recent years, more young people have been referred to specialised gender clinics for support with their gender identity. Interestingly, about 11% of these young people are also diagnosed with autism-much higher than the general population rate of only around 1%. This overlap has raised important questions about how autism and gender diversity are related, and even whether autism traits in gender-diverse people with an autism diagnosis really reflect autism. In this research, we carried out two studies to understand this link better. In the first study, we looked at autism traits in gender-diverse children and adolescents aged 7-16 years who were referred to a gender clinic for issues with their gender identity. We compared them with both autistic and nonautistic children who were not referred to gender services. We used several standard tools to assess autism-related traits, including both questionnaires and clinical interviews. We found that gender-diverse youth who were also autistic showed similar patterns of autism traits as cisgender autistic children who were not exploring their gender. Importantly, nonautistic gender-diverse youth did not show unusually high levels of autism traits, which challenges some earlier studies that suggested they might. In the second study, we explored autism traits in the caregivers (mostly mothers) of the young people","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"163-175"},"PeriodicalIF":5.6,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12717293/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145407973","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-01Epub Date: 2025-09-04DOI: 10.1177/13623613251368019
Anne V Kirby, Kristina Feldman, Wilhelm Clark, Amber N Darlington, Alissa Atisme, Bobbi Duncan-Ishcomer, Rachel Kripke-Ludwig, Andrea Joyce, Whitney Lee, Kayla Rodriguez, Zack Siddeek, Kavitha Murthi, Brooks Keeshin, Hilary Coon, Christina Nicolaidis
Autistic individuals are disproportionately likely to experience suicidal thoughts, feelings, and actions. Addressing suicidality is also a high priority of autistic community members. The goal of this study was to understand broad influences on suicidality and suicide-prevention needs for the autistic community. Using a community-based participatory research approach, we conducted a reflective thematic analysis of qualitative interviews with 16 autistic adults, 8 family members, and 14 mental health providers. Themes summarizing influences on suicidality and suicide-prevention needs centered on three broad thematic concepts: (1) Pervasive negative societal attitudes and social experiences have a lasting impact on autistic people's feelings of worth; (2) negative experiences and stressors add strain, making life feel overwhelming and hopeless; and (3) difficulty regulating and managing emotions can increase the likelihood of suicidal feelings and actions. Participants provided autism-specific recommendations to incorporate into suicide prevention. The findings emphasize the need for multifaceted suicide-prevention efforts supporting autistic people through improved societal treatment, community-level supports, and individually tailored services.Lay AbstractAutistic people experience suicidal thoughts, feelings, and actions more often than non-autistic people. Autistic community members say this is an important research topic. The goal of this study was to understand broadly what kinds of things might lead autistic people to feel suicidal. We also wanted to know what is needed for suicide prevention for the autistic community. The research team for this study included autistic community partners using an approach called community-based participatory research. The study team did interviews with 16 autistic adults, 8 family members, and 14 mental health providers. The results show that different types of experiences can lead to suicidality. One influence is the negative treatment of autistic people. Negative experiences, challenges, and stressors can also make life feel overwhelming for autistic people. Finally, difficult emotions can be hard to manage. There are many things that participants thought would help autistic people feel less suicidal. The study shows that autistic people need to be treated better and need more community supports to help prevent suicidal feelings. They need individualized services to help manage their emotions.
{"title":"Influences on suicidality and suicide-prevention needs for the autistic community: Qualitative insights from multiple perspectives.","authors":"Anne V Kirby, Kristina Feldman, Wilhelm Clark, Amber N Darlington, Alissa Atisme, Bobbi Duncan-Ishcomer, Rachel Kripke-Ludwig, Andrea Joyce, Whitney Lee, Kayla Rodriguez, Zack Siddeek, Kavitha Murthi, Brooks Keeshin, Hilary Coon, Christina Nicolaidis","doi":"10.1177/13623613251368019","DOIUrl":"10.1177/13623613251368019","url":null,"abstract":"<p><p>Autistic individuals are disproportionately likely to experience suicidal thoughts, feelings, and actions. Addressing suicidality is also a high priority of autistic community members. The goal of this study was to understand broad influences on suicidality and suicide-prevention needs for the autistic community. Using a community-based participatory research approach, we conducted a reflective thematic analysis of qualitative interviews with 16 autistic adults, 8 family members, and 14 mental health providers. Themes summarizing influences on suicidality and suicide-prevention needs centered on three broad thematic concepts: (1) Pervasive negative societal attitudes and social experiences have a lasting impact on autistic people's feelings of worth; (2) negative experiences and stressors add strain, making life feel overwhelming and hopeless; and (3) difficulty regulating and managing emotions can increase the likelihood of suicidal feelings and actions. Participants provided autism-specific recommendations to incorporate into suicide prevention. The findings emphasize the need for multifaceted suicide-prevention efforts supporting autistic people through improved societal treatment, community-level supports, and individually tailored services.Lay AbstractAutistic people experience suicidal thoughts, feelings, and actions more often than non-autistic people. Autistic community members say this is an important research topic. The goal of this study was to understand broadly what kinds of things might lead autistic people to feel suicidal. We also wanted to know what is needed for suicide prevention for the autistic community. The research team for this study included autistic community partners using an approach called community-based participatory research. The study team did interviews with 16 autistic adults, 8 family members, and 14 mental health providers. The results show that different types of experiences can lead to suicidality. One influence is the negative treatment of autistic people. Negative experiences, challenges, and stressors can also make life feel overwhelming for autistic people. Finally, difficult emotions can be hard to manage. There are many things that participants thought would help autistic people feel less suicidal. The study shows that autistic people need to be treated better and need more community supports to help prevent suicidal feelings. They need individualized services to help manage their emotions.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"61-73"},"PeriodicalIF":5.6,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12412899/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144991287","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-01Epub Date: 2025-08-28DOI: 10.1177/13623613251366870
Raaya Alon
Typically developing siblings' acceptance of a sibling with Down syndrome (DS) or autism influences the nature of sibling relations and their willingness to care for their sibling with disability in the future. Optimism is a central personality characteristic in coping with challenging life situations and the emotions toward the sibling with Down syndrome/autism are prominent in siblings' adjustment to their complex circumstances. The current study examined how optimism and emotions toward a sibling with Down syndrome or autism influence typically developing siblings' acceptance of their sibling with a disability. The role of demographic variables (sex of the typically developing sibling, diagnosis, and independent functioning of the sibling with disability) was also considered. Participants included 520 Jewish-Israeli siblings (189 brothers, 331 sisters, aged 18-27). Of these, 284 had siblings with Down syndrome, and 236 had siblings with autism. Siblings completed self-report questionnaires on optimism, emotions, and acceptance. Hierarchical regressions with three-way interactions revealed that optimism, sex, and the sibling's diagnosis and independent functioning explained a significant portion of variance in acceptance. The findings highlight the importance of fostering optimism and emotional processing, particularly for siblings of individuals with autism and among brothers. These results have implications for interventions aimed at improving sibling relationships and future caregiving.Lay AbstractBeing a brother or sister to an individual with Down syndrome or autism can shape how siblings feel about and care for their sibling with the disability. This study looked at how optimism (a general positive outlook) and emotions relate to accepting the individual with the disability. The study also considered whether the non-disabled sibling's gender, diagnosis (Down syndrome or autism), and level of independent capability of the sibling with the disability contributed to the acceptance levels. Participants in the study were 520 Jewish-Israeli young adults (ages 18-27) who had a sibling with Down syndrome or autism. They answered questions about their emotions, optimism, and acceptance of the sibling with the disability. The results showed that optimism and emotions were important for acceptance, but this varied depending on whether the typically developing sibling was male or female, whether the sibling had Down syndrome or autism, and their level of independent capability. These findings suggest that helping siblings, especially brothers of individuals with autism, build optimism and process their emotions, can improve sibling relationships and support future caregiving roles.
{"title":"How do typically developing brothers and sisters accept their siblings with Down syndrome or autism? An examination of personal characteristics.","authors":"Raaya Alon","doi":"10.1177/13623613251366870","DOIUrl":"10.1177/13623613251366870","url":null,"abstract":"<p><p>Typically developing siblings' acceptance of a sibling with Down syndrome (DS) or autism influences the nature of sibling relations and their willingness to care for their sibling with disability in the future. Optimism is a central personality characteristic in coping with challenging life situations and the emotions toward the sibling with Down syndrome/autism are prominent in siblings' adjustment to their complex circumstances. The current study examined how optimism and emotions toward a sibling with Down syndrome or autism influence typically developing siblings' acceptance of their sibling with a disability. The role of demographic variables (sex of the typically developing sibling, diagnosis, and independent functioning of the sibling with disability) was also considered. Participants included 520 Jewish-Israeli siblings (189 brothers, 331 sisters, aged 18-27). Of these, 284 had siblings with Down syndrome, and 236 had siblings with autism. Siblings completed self-report questionnaires on optimism, emotions, and acceptance. Hierarchical regressions with three-way interactions revealed that optimism, sex, and the sibling's diagnosis and independent functioning explained a significant portion of variance in acceptance. The findings highlight the importance of fostering optimism and emotional processing, particularly for siblings of individuals with autism and among brothers. These results have implications for interventions aimed at improving sibling relationships and future caregiving.Lay AbstractBeing a brother or sister to an individual with Down syndrome or autism can shape how siblings feel about and care for their sibling with the disability. This study looked at how optimism (a general positive outlook) and emotions relate to accepting the individual with the disability. The study also considered whether the non-disabled sibling's gender, diagnosis (Down syndrome or autism), and level of independent capability of the sibling with the disability contributed to the acceptance levels. Participants in the study were 520 Jewish-Israeli young adults (ages 18-27) who had a sibling with Down syndrome or autism. They answered questions about their emotions, optimism, and acceptance of the sibling with the disability. The results showed that optimism and emotions were important for acceptance, but this varied depending on whether the typically developing sibling was male or female, whether the sibling had Down syndrome or autism, and their level of independent capability. These findings suggest that helping siblings, especially brothers of individuals with autism, build optimism and process their emotions, can improve sibling relationships and support future caregiving roles.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"84-96"},"PeriodicalIF":5.6,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144940345","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-01Epub Date: 2025-11-13DOI: 10.1177/13623613251377949
Gary Yu Hin Lam, Teresa Wan Ki Lam, Ophelia Tang, Gary Yeung, Sibyl Wai Chan
Unlike traditional autism awareness programs that often rely on didactic teaching and factual information, Human Library is a contact-based intervention that can engage "readers" in critical dialogs with "human books" to learn about their lived experience. This study reported on the pilot development of a Human Library in collaboration with a team of human books who are autistic to promote public understanding of autism in Hong Kong. Using a participatory realist evaluation framework, we conducted surveys and interviews with readers to construct a Human Library program model and evaluate its associated outcomes. Pre- and post-Human Library surveys showed a significant decrease in autism stigma and increase in neurodiversity attitudes. Interview findings revealed that readers' interests and concerns about the autistic community motivated them to participate in Human Library. Through personal interaction with autistic human books in a safe space created within Human Library, readers developed renewed understanding of autism and insights into autistic strengths. Readers became more informed of autistic people's perspectives and various sociocultural barriers that impact their well-being, which shaped how they would interact with autistic people in the community. The Human Library model has implications for promoting better understanding and attitudes of autism and fostering positive interaction between autistic and non-autistic people.Lay AbstractThere is a need to promote autism awareness and understanding in the public. Traditional methods often include direct teaching and sharing of facts about autism, but more creative and effective approaches are needed. Human Library (HL) works like an actual library, except that "books" are human beings who can share their lives and stories. This study developed and evaluated a Human Library specifically with autistic books to promote public understanding of autism in Hong Kong. We conducted surveys and interviews with the participating readers to understand how the Human Library works and its effects. After Human Library, readers reported decreased autism stigma and increased neurodiversity attitudes. Readers showed different understanding of autism contrary to their previous impressions. They appreciated more the strengths and perspectives of autistic individuals. They also considered more the autistic perspective when interacting with autistic people. Human Library can be an effective program to promote better understanding and attitudes of autism in the public.
{"title":"\"From the autistic human books' stories, I understand their mindset and thoughts\": Pilot development and participatory realist evaluation of Human Library to enhance public understanding of autism.","authors":"Gary Yu Hin Lam, Teresa Wan Ki Lam, Ophelia Tang, Gary Yeung, Sibyl Wai Chan","doi":"10.1177/13623613251377949","DOIUrl":"10.1177/13623613251377949","url":null,"abstract":"<p><p>Unlike traditional autism awareness programs that often rely on didactic teaching and factual information, Human Library is a contact-based intervention that can engage \"readers\" in critical dialogs with \"human books\" to learn about their lived experience. This study reported on the pilot development of a Human Library in collaboration with a team of human books who are autistic to promote public understanding of autism in Hong Kong. Using a participatory realist evaluation framework, we conducted surveys and interviews with readers to construct a Human Library program model and evaluate its associated outcomes. Pre- and post-Human Library surveys showed a significant decrease in autism stigma and increase in neurodiversity attitudes. Interview findings revealed that readers' interests and concerns about the autistic community motivated them to participate in Human Library. Through personal interaction with autistic human books in a safe space created within Human Library, readers developed renewed understanding of autism and insights into autistic strengths. Readers became more informed of autistic people's perspectives and various sociocultural barriers that impact their well-being, which shaped how they would interact with autistic people in the community. The Human Library model has implications for promoting better understanding and attitudes of autism and fostering positive interaction between autistic and non-autistic people.Lay AbstractThere is a need to promote autism awareness and understanding in the public. Traditional methods often include direct teaching and sharing of facts about autism, but more creative and effective approaches are needed. Human Library (HL) works like an actual library, except that \"books\" are human beings who can share their lives and stories. This study developed and evaluated a Human Library specifically with autistic books to promote public understanding of autism in Hong Kong. We conducted surveys and interviews with the participating readers to understand how the Human Library works and its effects. After Human Library, readers reported decreased autism stigma and increased neurodiversity attitudes. Readers showed different understanding of autism contrary to their previous impressions. They appreciated more the strengths and perspectives of autistic individuals. They also considered more the autistic perspective when interacting with autistic people. Human Library can be an effective program to promote better understanding and attitudes of autism in the public.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"213-227"},"PeriodicalIF":5.6,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145501894","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-01Epub Date: 2025-09-01DOI: 10.1177/13623613251370814
Susan M Hayward, Sophie Hennekam, Simon M Bury
<p><p>This study investigated the relationship between the perceived quality of employee-manager relationships and workplace outcomes, and whether these differed between autistic and non-autistic employees. We surveyed 189 employed participants (<i>n</i> = 92 autistic, <i>n</i> = 97 non-autistic) from the United Kingdom. Participants completed measures of employee-manager relationship quality; workplace behaviours, for example, strengths use and job crafting; and outcomes, for example, career development opportunities and job satisfaction. Multiple regression analyses assessed the association between employee-manager relationship and autism diagnosis on behaviours and outcomes. One's relationship with their manager was a significant predictor of all workplace behaviours and outcomes, explaining 22% of the variance in career development opportunities and 7%-11% for other dependent variables. Autism diagnosis was not an independent predictor of the quality of the employee-manager relationship and outcomes. Autistic participants rated the relationship with their managers as poorer than non-autistic employees. This study emphasises the importance of positive employee-manager relationships for career success, irrespective of neurotype. However, the poorer ratings of these relationships by autistic employees highlight a critical need for strategies to enhance employee-manager relationships.Lay Abstract<b>Quality Employee-Manager Relationships are Key to Career Success</b><b><i>Why is this an important issue?</i></b>Finding and keeping meaningful work is challenging for many autistic adults. A key factor in career success is the relationship between employees and their managers. Research shows that a strong relationship with one's manager can help employees use their strengths, feel more satisfied in their jobs and grow in their careers. However, little is known about how this applies to autistic employees, who may face unique challenges in the workplace. Understanding how these relationships affect autistic employees is important for creating supportive, inclusive and successful work environments.<b><i>What was the purpose of this study?</i></b>The study aimed to explore whether the quality of the relationship between employees and their managers affects autistic employees' workplace success. The researchers wanted to know if this relationship impacts things like job satisfaction, career development opportunities and the ability to use their strengths at work. They also compared autistic employees to non-autistic employees to see if there were any differences in these areas.<b><i>What did the researchers do?</i></b>The researchers surveyed 189 employees from the United Kingdom, including 92 autistic and 97 non-autistic participants. They asked participants about their relationship with their manager, how often they used their strengths at work, their job satisfaction and their career development opportunities. The researchers analysed this data to see
{"title":"Quality employee-manager relationships are key to career success.","authors":"Susan M Hayward, Sophie Hennekam, Simon M Bury","doi":"10.1177/13623613251370814","DOIUrl":"10.1177/13623613251370814","url":null,"abstract":"<p><p>This study investigated the relationship between the perceived quality of employee-manager relationships and workplace outcomes, and whether these differed between autistic and non-autistic employees. We surveyed 189 employed participants (<i>n</i> = 92 autistic, <i>n</i> = 97 non-autistic) from the United Kingdom. Participants completed measures of employee-manager relationship quality; workplace behaviours, for example, strengths use and job crafting; and outcomes, for example, career development opportunities and job satisfaction. Multiple regression analyses assessed the association between employee-manager relationship and autism diagnosis on behaviours and outcomes. One's relationship with their manager was a significant predictor of all workplace behaviours and outcomes, explaining 22% of the variance in career development opportunities and 7%-11% for other dependent variables. Autism diagnosis was not an independent predictor of the quality of the employee-manager relationship and outcomes. Autistic participants rated the relationship with their managers as poorer than non-autistic employees. This study emphasises the importance of positive employee-manager relationships for career success, irrespective of neurotype. However, the poorer ratings of these relationships by autistic employees highlight a critical need for strategies to enhance employee-manager relationships.Lay Abstract<b>Quality Employee-Manager Relationships are Key to Career Success</b><b><i>Why is this an important issue?</i></b>Finding and keeping meaningful work is challenging for many autistic adults. A key factor in career success is the relationship between employees and their managers. Research shows that a strong relationship with one's manager can help employees use their strengths, feel more satisfied in their jobs and grow in their careers. However, little is known about how this applies to autistic employees, who may face unique challenges in the workplace. Understanding how these relationships affect autistic employees is important for creating supportive, inclusive and successful work environments.<b><i>What was the purpose of this study?</i></b>The study aimed to explore whether the quality of the relationship between employees and their managers affects autistic employees' workplace success. The researchers wanted to know if this relationship impacts things like job satisfaction, career development opportunities and the ability to use their strengths at work. They also compared autistic employees to non-autistic employees to see if there were any differences in these areas.<b><i>What did the researchers do?</i></b>The researchers surveyed 189 employees from the United Kingdom, including 92 autistic and 97 non-autistic participants. They asked participants about their relationship with their manager, how often they used their strengths at work, their job satisfaction and their career development opportunities. The researchers analysed this data to see ","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"111-121"},"PeriodicalIF":5.6,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12717290/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144940421","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-01Epub Date: 2025-08-12DOI: 10.1177/13623613251362265
Amy Gillions, Elizabeth O'Nions, Hassan Mansour, Sarah Hoare, Will Mandy, Joshua Stott
Autistic women experience a higher prevalence of physical and mental health conditions compared with autistic men and non-autistic women, plus greater premature mortality and a higher suicide risk. However, little is known about autistic women's experiences of healthcare, particularly in middle and later life. We aimed to explore autistic women's perspectives on accessing healthcare services in the United Kingdom. Fifteen autistic women aged between 51 and 73 years participated in semi-structured interviews, which were analysed using reflexive thematic analysis. Four main themes were generated: (1) Stigma and stereotypes in professionals' understanding of autism leading to poor-quality care, (2) Accumulation of negative healthcare experiences reducing participants' confidence in services, (3) Efforts required to navigate healthcare systems and (4) The future: age-related concerns and hopes for change. The autistic women in this study reported multiple barriers to accessing healthcare and they felt stigmatised by repeated negative interactions with healthcare providers. Intersections between age and gender affected how participants felt they were perceived in healthcare settings; specifically, participants felt that being an older woman contributed to their autism-related needs being overlooked or misunderstood. Implications for services and directions for future research are discussed.Lay abstractWhy was the study done and what did the researchers do?Autistic women face distinctive healthcare challenges compared with autistic men and non-autistic women. However, there is not much information about their experiences with healthcare in the UK, especially as they age. To better understand the lived experiences of this population, the research team in this study interviewed 15 autistic women in middle to later life about their healthcare experiences. Information from the interviews was analysed by creating themes based on what the participants had reported.What did the researchers find?Four main themes came out of the analysis.1. Participants expressed concerns that stigma and stereotypes associated with autism led to poor healthcare experiences.2. Participants' confidence in seeking help was affected by having many negative experiences across their lives. Difficult interactions with healthcare providers also made them less confident in seeking help.3. Navigating the healthcare system was a challenge for participants.4. Participants thought a lot about the future. They had worries about ageing and what consequences this might have on their health and support needs. They also shared hopes for better healthcare in the future.What do the findings mean?The findings highlight that autistic women in middle to later life face many barriers in accessing healthcare. The study emphasises the need for better understanding and support for autistic women in healthcare settings.
{"title":"The healthcare experiences of middle and older age autistic women in the United Kingdom.","authors":"Amy Gillions, Elizabeth O'Nions, Hassan Mansour, Sarah Hoare, Will Mandy, Joshua Stott","doi":"10.1177/13623613251362265","DOIUrl":"10.1177/13623613251362265","url":null,"abstract":"<p><p>Autistic women experience a higher prevalence of physical and mental health conditions compared with autistic men and non-autistic women, plus greater premature mortality and a higher suicide risk. However, little is known about autistic women's experiences of healthcare, particularly in middle and later life. We aimed to explore autistic women's perspectives on accessing healthcare services in the United Kingdom. Fifteen autistic women aged between 51 and 73 years participated in semi-structured interviews, which were analysed using reflexive thematic analysis. Four main themes were generated: (1) Stigma and stereotypes in professionals' understanding of autism leading to poor-quality care, (2) Accumulation of negative healthcare experiences reducing participants' confidence in services, (3) Efforts required to navigate healthcare systems and (4) The future: age-related concerns and hopes for change. The autistic women in this study reported multiple barriers to accessing healthcare and they felt stigmatised by repeated negative interactions with healthcare providers. Intersections between age and gender affected how participants felt they were perceived in healthcare settings; specifically, participants felt that being an older woman contributed to their autism-related needs being overlooked or misunderstood. Implications for services and directions for future research are discussed.Lay abstract<b>Why was the study done and what did the researchers do?</b>Autistic women face distinctive healthcare challenges compared with autistic men and non-autistic women. However, there is not much information about their experiences with healthcare in the UK, especially as they age. To better understand the lived experiences of this population, the research team in this study interviewed 15 autistic women in middle to later life about their healthcare experiences. Information from the interviews was analysed by creating themes based on what the participants had reported.<b>What did the researchers find?</b>Four main themes came out of the analysis.1. Participants expressed concerns that stigma and stereotypes associated with autism led to poor healthcare experiences.2. Participants' confidence in seeking help was affected by having many negative experiences across their lives. Difficult interactions with healthcare providers also made them less confident in seeking help.3. Navigating the healthcare system was a challenge for participants.4. Participants thought a lot about the future. They had worries about ageing and what consequences this might have on their health and support needs. They also shared hopes for better healthcare in the future.<b>What do the findings mean?</b>The findings highlight that autistic women in middle to later life face many barriers in accessing healthcare. The study emphasises the need for better understanding and support for autistic women in healthcare settings.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"49-60"},"PeriodicalIF":5.6,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12717282/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144820459","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-01Epub Date: 2025-08-12DOI: 10.1177/13623613251362273
Li Sirao, Huang Yaping, Liu Yunshan, Li Dan
This systematic review and network meta-analysis evaluated the efficacy of various therapies on sleep disturbances in children with autism spectrum disorder. We analyzed 35 randomized controlled trials comparing five interventions: melatonin, parent-mediated sleep education, behavioral interventions, physical activity, and adjunctive therapies. Standardized mean differences and surface under the cumulative ranking curve values were calculated to rank efficacy. Physical activity demonstrated the largest effect size (standardized mean difference = 1.13, surface under the cumulative ranking curve = 98.1%), followed by melatonin (standardized mean difference = 0.57, surface under the cumulative ranking curve = 62.8%) and behavioral interventions (standardized mean difference = 0.49, surface under the cumulative ranking curve = 51.6%). Parent education and adjunctive therapies showed limited efficacy. Heterogeneity (I² = 67%) was addressed via sensitivity analyses. A stepped-care model is recommended, prioritizing daytime physical activity (30-45 min, 3-5 sessions/week) combined with telehealth parent education as first-line treatment, followed by prolonged-release melatonin and therapist-supported cognitive behavioral therapy for non-responders.Lay abstractMany children with autism spectrum disorder struggle with sleep problems like trouble falling asleep, waking up at night, or not sleeping enough. This study looked at different treatments to improve sleep in these children, including melatonin supplements, parent-led bedtime routines, exercise programs, and other therapies. The researchers reviewed 35 studies involving over 2700 children with autism spectrum disorder. They compared how well each treatment worked using a method called network meta-analysis, which ranks treatments based on their effectiveness. Exercise programs, such as swimming or martial arts, were the most effective at improving sleep. These activities helped children fall asleep faster and stay asleep longer. Melatonin supplements also worked well but had side effects like morning drowsiness. Behavioral strategies, like structured bedtime routines, showed moderate benefits, while therapies like weighted blankets or iron supplements had little impact. This study helps families and doctors choose the best treatments for sleep problems in children with autism spectrum disorder. Exercise is a safe, low-cost option that not only improves sleep but also enhances daytime behavior. The findings support starting with physical activity and parent coaching before trying medications like melatonin. Recognizing effective treatments can reduce stress for caregivers and improve quality of life for children with autism spectrum disorder.
{"title":"Pharmacological or non-pharmacological therapies? The impact of different therapies on sleep in children with autism spectrum disorder: A systematic review and network meta-analysis.","authors":"Li Sirao, Huang Yaping, Liu Yunshan, Li Dan","doi":"10.1177/13623613251362273","DOIUrl":"10.1177/13623613251362273","url":null,"abstract":"<p><p>This systematic review and network meta-analysis evaluated the efficacy of various therapies on sleep disturbances in children with autism spectrum disorder. We analyzed 35 randomized controlled trials comparing five interventions: melatonin, parent-mediated sleep education, behavioral interventions, physical activity, and adjunctive therapies. Standardized mean differences and surface under the cumulative ranking curve values were calculated to rank efficacy. Physical activity demonstrated the largest effect size (standardized mean difference = 1.13, surface under the cumulative ranking curve = 98.1%), followed by melatonin (standardized mean difference = 0.57, surface under the cumulative ranking curve = 62.8%) and behavioral interventions (standardized mean difference = 0.49, surface under the cumulative ranking curve = 51.6%). Parent education and adjunctive therapies showed limited efficacy. Heterogeneity (<i>I</i>² = 67%) was addressed via sensitivity analyses. A stepped-care model is recommended, prioritizing daytime physical activity (30-45 min, 3-5 sessions/week) combined with telehealth parent education as first-line treatment, followed by prolonged-release melatonin and therapist-supported cognitive behavioral therapy for non-responders.Lay abstractMany children with autism spectrum disorder struggle with sleep problems like trouble falling asleep, waking up at night, or not sleeping enough. This study looked at different treatments to improve sleep in these children, including melatonin supplements, parent-led bedtime routines, exercise programs, and other therapies. The researchers reviewed 35 studies involving over 2700 children with autism spectrum disorder. They compared how well each treatment worked using a method called network meta-analysis, which ranks treatments based on their effectiveness. Exercise programs, such as swimming or martial arts, were the most effective at improving sleep. These activities helped children fall asleep faster and stay asleep longer. Melatonin supplements also worked well but had side effects like morning drowsiness. Behavioral strategies, like structured bedtime routines, showed moderate benefits, while therapies like weighted blankets or iron supplements had little impact. This study helps families and doctors choose the best treatments for sleep problems in children with autism spectrum disorder. Exercise is a safe, low-cost option that not only improves sleep but also enhances daytime behavior. The findings support starting with physical activity and parent coaching before trying medications like melatonin. Recognizing effective treatments can reduce stress for caregivers and improve quality of life for children with autism spectrum disorder.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"9-19"},"PeriodicalIF":5.6,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144820458","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-01Epub Date: 2025-09-20DOI: 10.1177/13623613251371509
Chris Edwards, Abigail Ma Love, Ru Ying Cai, Paul Constable, Daniel C Love, Ketan Parmar, Emma Gowen, Vicki Gibbs
<p><p>Autistic people face persistent barriers to accessing healthcare, yet little is known about their experiences receiving eye care, despite elevated rates of vision conditions. This convergent mixed-methods study explored the eye care experiences of 127 autistic adults and 69 parents of autistic children living in Australia and Aotearoa New Zealand. Through an online survey incorporating both structured and open-ended items, we examined access patterns, perceived barriers and enablers, and unmet needs. Quantitative data revealed widespread challenges, including sensory discomfort, communication difficulties, and financial costs, while qualitative responses foregrounded how provider interaction, clinical pacing, and environmental conditions shaped overall experience. Although participants valued clearer communication and sensory-informed adjustments, these were described as insufficient in the face of structural barriers such as affordability and inaccessible service locations. These findings align with emerging models of autism-informed healthcare that advocate for systemic, rather than ad hoc, approaches to accessibility. Our results underscore the need for proactive, cross-sector solutions developed in partnership with autistic people, which embed neurodiversity-affirming principles into eye care design, delivery, and policy. Addressing these inequities is both an ethical and practical imperative if we are to ensure that eye care services are inclusive, sustainable, and responsive to diverse ways of being.Lay abstractAutistic people often face barriers when using healthcare services, but little is known about their experiences with eye care. This is important because autistic people are more likely to have vision problems like needing glasses, having a lazy eye, or having trouble with how their eyes work together. In this study, we asked 127 autistic adults and 69 parents of autistic children in Australia and Aotearoa New Zealand about their experiences receiving eye care. People completed an online survey that included multiple-choice questions and space to describe their experiences in their own words. Many participants said that eye care could be stressful or confusing. Common challenges included unclear instructions, bright lights, noisy environments, feeling rushed, and staff not understanding autism. Some people avoided going to eye care professionals altogether because they could not afford glasses or found the environment too overwhelming. Participants said that small changes like using plain language, giving more time, and creating a calm environment helped make care more accessible. However, these small changes were not always enough, especially when services were too expensive or hard to get to. To improve access to eye care, changes need to happen at all levels, including how clinics are designed and how staff are trained. These changes should be made together with autistic people to make sure that services meet their needs and
{"title":"Understanding eye care access for autistic adults and families: A convergent mixed-methods study.","authors":"Chris Edwards, Abigail Ma Love, Ru Ying Cai, Paul Constable, Daniel C Love, Ketan Parmar, Emma Gowen, Vicki Gibbs","doi":"10.1177/13623613251371509","DOIUrl":"10.1177/13623613251371509","url":null,"abstract":"<p><p>Autistic people face persistent barriers to accessing healthcare, yet little is known about their experiences receiving eye care, despite elevated rates of vision conditions. This convergent mixed-methods study explored the eye care experiences of 127 autistic adults and 69 parents of autistic children living in Australia and Aotearoa New Zealand. Through an online survey incorporating both structured and open-ended items, we examined access patterns, perceived barriers and enablers, and unmet needs. Quantitative data revealed widespread challenges, including sensory discomfort, communication difficulties, and financial costs, while qualitative responses foregrounded how provider interaction, clinical pacing, and environmental conditions shaped overall experience. Although participants valued clearer communication and sensory-informed adjustments, these were described as insufficient in the face of structural barriers such as affordability and inaccessible service locations. These findings align with emerging models of autism-informed healthcare that advocate for systemic, rather than ad hoc, approaches to accessibility. Our results underscore the need for proactive, cross-sector solutions developed in partnership with autistic people, which embed neurodiversity-affirming principles into eye care design, delivery, and policy. Addressing these inequities is both an ethical and practical imperative if we are to ensure that eye care services are inclusive, sustainable, and responsive to diverse ways of being.Lay abstractAutistic people often face barriers when using healthcare services, but little is known about their experiences with eye care. This is important because autistic people are more likely to have vision problems like needing glasses, having a lazy eye, or having trouble with how their eyes work together. In this study, we asked 127 autistic adults and 69 parents of autistic children in Australia and Aotearoa New Zealand about their experiences receiving eye care. People completed an online survey that included multiple-choice questions and space to describe their experiences in their own words. Many participants said that eye care could be stressful or confusing. Common challenges included unclear instructions, bright lights, noisy environments, feeling rushed, and staff not understanding autism. Some people avoided going to eye care professionals altogether because they could not afford glasses or found the environment too overwhelming. Participants said that small changes like using plain language, giving more time, and creating a calm environment helped make care more accessible. However, these small changes were not always enough, especially when services were too expensive or hard to get to. To improve access to eye care, changes need to happen at all levels, including how clinics are designed and how staff are trained. These changes should be made together with autistic people to make sure that services meet their needs and ","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"122-133"},"PeriodicalIF":5.6,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12717288/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145091128","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}