Pub Date : 2024-11-24DOI: 10.1177/13623613241297223
Aspasia Stacey Rabba, Jodie Smith, Gabrielle Hall, Vanessa Alexander, Kate Batty, Poulomee Datta, Emma Goodall, Melanie Heyworth, Siobhan Lamb, Wenn Lawson, Rozanna Lilley, Katy Reid, Najeeba Syeda, Elizabeth Pellicano
Lay abstract: Good relationships between families and schools make a difference to children's learning - and the same goes for autistic children. But parents of autistic children often find it very stressful interacting with teachers and school staff. In this study, we focused on autistic parents of autistic children. We wanted to know about their experiences of interacting with schools and the impact these had on them and their children. We spoke to 31 autistic mothers of autistic children about their experiences. They told us that they felt they were constantly fighting with schools to get the support needed for their autistic children and compared it to like being in a 'war zone'. They were 'sick of being [viewed as] the problem' and felt that their views and autistic expertise were not taken seriously by teachers and schools. This was damaging to their autistic children's mental health as well as their own. Autistic mothers did share some positive experiences too. They spoke about the value of mutual respect and its impact on successful school partnerships. Autistic mothers also spoke about standing up for themselves and their children and how this advocacy and self-advocacy helped them to build better relationships with schools. This research showed how difficult it can be for autistic families to interact with teachers and schools and the impact this can have on the whole family. It also showed us that strong, trusting relationships between school and families are possible - when autistic parents feel safe, and when their knowledge and lived experience are taken seriously by educators.
{"title":"'I'm sick of being the problem': Autistic mothers' experiences of interacting with schools for their autistic children.","authors":"Aspasia Stacey Rabba, Jodie Smith, Gabrielle Hall, Vanessa Alexander, Kate Batty, Poulomee Datta, Emma Goodall, Melanie Heyworth, Siobhan Lamb, Wenn Lawson, Rozanna Lilley, Katy Reid, Najeeba Syeda, Elizabeth Pellicano","doi":"10.1177/13623613241297223","DOIUrl":"https://doi.org/10.1177/13623613241297223","url":null,"abstract":"<p><strong>Lay abstract: </strong>Good relationships between families and schools make a difference to children's learning - and the same goes for autistic children. But parents of autistic children often find it very stressful interacting with teachers and school staff. In this study, we focused on autistic parents of autistic children. We wanted to know about their experiences of interacting with schools and the impact these had on them and their children. We spoke to 31 autistic mothers of autistic children about their experiences. They told us that they felt they were constantly fighting with schools to get the support needed for their autistic children and compared it to like being in a 'war zone'. They were 'sick of being [viewed as] the problem' and felt that their views and autistic expertise were not taken seriously by teachers and schools. This was damaging to their autistic children's mental health as well as their own. Autistic mothers did share some positive experiences too. They spoke about the value of mutual respect and its impact on successful school partnerships. Autistic mothers also spoke about standing up for themselves and their children and how this advocacy and self-advocacy helped them to build better relationships with schools. This research showed how difficult it can be for autistic families to interact with teachers and schools and the impact this can have on the whole family. It also showed us that strong, trusting relationships between school and families are possible - when autistic parents feel safe, and when their knowledge and lived experience are taken seriously by educators.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613241297223"},"PeriodicalIF":5.2,"publicationDate":"2024-11-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142709111","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 : 2024-11-24DOI: 10.1177/13623613241298037
Meghan E Carey, Kiley J McLean, Kyle Chvasta, Ashley de Marchena, Anne M Roux
Lay abstract: Over the last decade, especially since the pandemic, more research has been happening online. Conducting research online can create opportunities to include autistic people across the world and make our studies more diverse. However, conducting research online had led to scammers, or people pretending to be autistic, participating in autism research studies. Strategies to stop scammers may accidentally leave out autistic people who have difficulty with processing time and open-ended questions. We tried out documented strategies to stop scammers from participating in autism research. We also tested new strategies to understand how helpful they are. Using these strategies, we suspected over 100 people who wanted to participate were scammers and did not invite them to participate. As researchers, we must ensure we stop scammers from participating in our studies. It's important to highlight autistic voices and guarantee we get accurate results. However, the strategies to identify scammers may also leave out autistic people who have communication differences. This is unfair and could also make our results less reliable. The existing and new strategies to stop scammers take a lot of time and resources but they're worth it to make sure our data are reliable, and include only autistic voices.
{"title":"Methods to reduce fraudulent participation and highlight autistic voices in research.","authors":"Meghan E Carey, Kiley J McLean, Kyle Chvasta, Ashley de Marchena, Anne M Roux","doi":"10.1177/13623613241298037","DOIUrl":"https://doi.org/10.1177/13623613241298037","url":null,"abstract":"<p><strong>Lay abstract: </strong>Over the last decade, especially since the pandemic, more research has been happening online. Conducting research online can create opportunities to include autistic people across the world and make our studies more diverse. However, conducting research online had led to scammers, or people pretending to be autistic, participating in autism research studies. Strategies to stop scammers may accidentally leave out autistic people who have difficulty with processing time and open-ended questions. We tried out documented strategies to stop scammers from participating in autism research. We also tested new strategies to understand how helpful they are. Using these strategies, we suspected over 100 people who wanted to participate were scammers and did not invite them to participate. As researchers, we must ensure we stop scammers from participating in our studies. It's important to highlight autistic voices and guarantee we get accurate results. However, the strategies to identify scammers may also leave out autistic people who have communication differences. This is unfair and could also make our results less reliable. The existing and new strategies to stop scammers take a lot of time and resources but they're worth it to make sure our data are reliable, and include only autistic voices.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613241298037"},"PeriodicalIF":5.2,"publicationDate":"2024-11-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142709117","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 : 2024-11-21DOI: 10.1177/13623613241299285
Yona Lunsky, Robert Balogh, Hannah Chung, Anna Durbin, Meng-Chuan Lai, Ami Tint, Jonathan Weiss, Barry Isaacs, Elizabeth Lin
Lay abstract: We know that autistic people have more health problems and are more likely to go to the emergency department and get hospitalized than other people, but we know less about the problems they have once they get to the hospital. In this study, we looked at all autistic adults in Ontario and compared them to adults who were not autistic and to adults who had other kinds of developmental disabilities to see who came back to the emergency department in the month after an emergency department visit, who got re-hospitalized in the month after being sent home from hospital, and who stayed in the hospital longer than they needed to because there was no place appropriate for them to go to. We found that both autistic males and females were more likely to have these things happen to them than the same age- and sex-matched adults who did not have developmental disabilities. We also found that adults with other kinds of developmental disabilities had similar problems to autistic people. This makes us think that we need to work harder to improve health care for autistic adults and adults with other developmental disabilities when they come to hospital. We also need to make community services work better, and work more closely with hospital services, so that people only come to hospital when they need to and that they can go home when they are ready.
{"title":"Repeated use of hospital-based services and delayed hospital discharges in a population-based cohort of autistic adults in Canada.","authors":"Yona Lunsky, Robert Balogh, Hannah Chung, Anna Durbin, Meng-Chuan Lai, Ami Tint, Jonathan Weiss, Barry Isaacs, Elizabeth Lin","doi":"10.1177/13623613241299285","DOIUrl":"10.1177/13623613241299285","url":null,"abstract":"<p><strong>Lay abstract: </strong>We know that autistic people have more health problems and are more likely to go to the emergency department and get hospitalized than other people, but we know less about the problems they have once they get to the hospital. In this study, we looked at all autistic adults in Ontario and compared them to adults who were not autistic and to adults who had other kinds of developmental disabilities to see who came back to the emergency department in the month after an emergency department visit, who got re-hospitalized in the month after being sent home from hospital, and who stayed in the hospital longer than they needed to because there was no place appropriate for them to go to. We found that both autistic males and females were more likely to have these things happen to them than the same age- and sex-matched adults who did not have developmental disabilities. We also found that adults with other kinds of developmental disabilities had similar problems to autistic people. This makes us think that we need to work harder to improve health care for autistic adults and adults with other developmental disabilities when they come to hospital. We also need to make community services work better, and work more closely with hospital services, so that people only come to hospital when they need to and that they can go home when they are ready.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613241299285"},"PeriodicalIF":5.2,"publicationDate":"2024-11-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142685836","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}
Lay abstract: Recent research shows that in conversations, both participants influence the outcome. More specifically, conversations do not go as smoothly when autistic and non-autistic people talk together compared to when people of the same neurotype (either all autistic or all non-autistic) talk to each other. In studies finding a "same-neurotype communicative advantage", interaction partners knew about each other's neurotype. Because of this methodological choice, it is unclear whether mixed-neurotype interactions go less smoothly because participants knew they were interacting with a different neurotype or because each neurotype really has a distinct communication style. In our study, 134 adults were grouped into same-sex pairs: 23 autistic, 23 non-autistic, and 21 mixed-neurotype pairs. The pairs did not know if the other person was autistic or not. They completed an online task where the "Director" instructs the "Matcher" to reorder abstract pictures. Pairs did this task in two ways: by typing in a live chat and by speaking into a microphone without video. The study looked at how long the task took and how much the Director talked/wrote. Results showed that non-autistic pairs were faster to complete the task than autistic pairs and mixed pairs, meaning pairs with at least one autistic person were slower in general to complete the task. Interestingly, in mixed pairs, only autistic Directors produced more words than non-autistic Directors, in both typing and speaking. These findings suggest that even without knowing about their partner's neurotype and seeing/hearing their partner, autistic adults communicate differently when they interact with a non-autistic person.
{"title":"Autistic adults display different verbal behavior only in mixed-neurotype interactions: Evidence from a referential communication task.","authors":"Philippine Geelhand, Fanny Papastamou, Solène Jaspard, Mikhail Kissine","doi":"10.1177/13623613241298376","DOIUrl":"https://doi.org/10.1177/13623613241298376","url":null,"abstract":"<p><strong>Lay abstract: </strong>Recent research shows that in conversations, both participants influence the outcome. More specifically, conversations do not go as smoothly when autistic and non-autistic people talk together compared to when people of the same neurotype (either all autistic or all non-autistic) talk to each other. In studies finding a \"same-neurotype communicative advantage\", interaction partners knew about each other's neurotype. Because of this methodological choice, it is unclear whether mixed-neurotype interactions go less smoothly because participants knew they were interacting with a different neurotype or because each neurotype really has a distinct communication style. In our study, 134 adults were grouped into same-sex pairs: 23 autistic, 23 non-autistic, and 21 mixed-neurotype pairs. The pairs did not know if the other person was autistic or not. They completed an online task where the \"Director\" instructs the \"Matcher\" to reorder abstract pictures. Pairs did this task in two ways: by typing in a live chat and by speaking into a microphone without video. The study looked at how long the task took and how much the Director talked/wrote. Results showed that non-autistic pairs were faster to complete the task than autistic pairs and mixed pairs, meaning pairs with at least one autistic person were slower in general to complete the task. Interestingly, in mixed pairs, only autistic Directors produced more words than non-autistic Directors, in both typing and speaking. These findings suggest that even without knowing about their partner's neurotype and seeing/hearing their partner, autistic adults communicate differently when they interact with a non-autistic person.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613241298376"},"PeriodicalIF":5.2,"publicationDate":"2024-11-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142685835","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 : 2024-11-19DOI: 10.1177/13623613241301113
Casey J Zampella, Julia Parish-Morris, Jessica Foy, Meredith Cola, Robert T Schultz, John D Herrington
Societal expectations for social-emotional behavior differ across sexes; however, diagnostic definitions of autism do not account for this when delineating "typical" versus "atypical." This study examines sex differences in autism in one behavior associated with strong gender biases: smiling. Computer vision was used to quantify smiling in 60 autistic (20 female) and 67 neurotypical (25 female) youth during conversations. Effects of sex and diagnosis were examined on degree of smiling, smile prototypicality, changes in smiling, and impact of smiling on interaction quality. Sex differences in smiling persisted across diagnosis groups: females smiled more than males, and their smiles were more prototypical. Autistic youth smiled less, and less prototypically, than neurotypical youth, with no sex by diagnosis interactions. In autism, the association between smile activity and interaction quality approached statistical significance, seemingly driven by autistic males but not females. Findings are consistent with population trends for females to smile more during social exchanges and "display rules" requiring more positive expressivity from females. Autism has historically been defined based on differences between autistic and neurotypical males. Failure to acknowledge sex-based differences in social-emotional behavior may leave some females appearing to have fewer autistic traits, increasing their risk of being under-identified and misunderstood.
{"title":"\"You should smile more\": Population-level sex differences in smiling also exist in autistic people.","authors":"Casey J Zampella, Julia Parish-Morris, Jessica Foy, Meredith Cola, Robert T Schultz, John D Herrington","doi":"10.1177/13623613241301113","DOIUrl":"10.1177/13623613241301113","url":null,"abstract":"<p><p>Societal expectations for social-emotional behavior differ across sexes; however, diagnostic definitions of autism do not account for this when delineating \"typical\" versus \"atypical.\" This study examines sex differences in autism in one behavior associated with strong gender biases: smiling. Computer vision was used to quantify smiling in 60 autistic (20 female) and 67 neurotypical (25 female) youth during conversations. Effects of sex and diagnosis were examined on degree of smiling, smile prototypicality, changes in smiling, and impact of smiling on interaction quality. Sex differences in smiling persisted across diagnosis groups: females smiled more than males, and their smiles were more prototypical. Autistic youth smiled less, and less prototypically, than neurotypical youth, with no sex by diagnosis interactions. In autism, the association between smile activity and interaction quality approached statistical significance, seemingly driven by autistic males but not females. Findings are consistent with population trends for females to smile more during social exchanges and \"display rules\" requiring more positive expressivity from females. Autism has historically been defined based on differences between autistic and neurotypical <i>males</i>. Failure to acknowledge sex-based differences in social-emotional behavior may leave some females appearing to have fewer autistic traits, increasing their risk of being under-identified and misunderstood.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613241301113"},"PeriodicalIF":5.2,"publicationDate":"2024-11-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142667081","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 : 2024-11-19DOI: 10.1177/13623613241290096
Borbála Gabriella Koltai, Eszter Pados, József Rácz
Lay abstract: Being a father of an autistic son is a profound and complex experience. Fathers adapt to their autistic sons' unique needs and are always in search of services to ease uncertainties about their sons' present and future. We interviewed 10 Hungarian fathers who have adult-aged autistic children. We asked them about their experiences raising their autistic sons during childhood and adulthood. Our study focused on fathers of adult-aged sons because most research has studied mothers' experiences of autistic children under 18 years old. It is also essential to know how to be like a father with adult-aged autistic children. Fathers shared their ongoing struggle with uncertainty, always seeking the best possible solutions for their sons. They also talked about how they understand and adapt to autism and accept their sons with their special, autism-related characteristics. The findings of this research provide a deeper understanding of fathers' parenting experience, giving suggestions for professionals on supporting them and making their experiences valuable to the community of parents raising autistic children.
{"title":"Unveiling missing voices - Lifelong Experiences of fathers parenting autistic sons: An interpretative phenomenological analysis.","authors":"Borbála Gabriella Koltai, Eszter Pados, József Rácz","doi":"10.1177/13623613241290096","DOIUrl":"10.1177/13623613241290096","url":null,"abstract":"<p><strong>Lay abstract: </strong>Being a father of an autistic son is a profound and complex experience. Fathers adapt to their autistic sons' unique needs and are always in search of services to ease uncertainties about their sons' present and future. We interviewed 10 Hungarian fathers who have adult-aged autistic children. We asked them about their experiences raising their autistic sons during childhood and adulthood. Our study focused on fathers of adult-aged sons because most research has studied mothers' experiences of autistic children under 18 years old. It is also essential to know how to be like a father with adult-aged autistic children. Fathers shared their ongoing struggle with uncertainty, always seeking the best possible solutions for their sons. They also talked about how they understand and adapt to autism and accept their sons with their special, autism-related characteristics. The findings of this research provide a deeper understanding of fathers' parenting experience, giving suggestions for professionals on supporting them and making their experiences valuable to the community of parents raising autistic children.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613241290096"},"PeriodicalIF":5.2,"publicationDate":"2024-11-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142667094","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 : 2024-11-18DOI: 10.1177/13623613241298043
Karla Rivera-Figueroa, Stephanie Milan, Thyde Dumont-Mathieu, Diane Quinn, Inge-Marie Eigsti
Racial and ethnic disparities in service utilization in autism are widely documented. Autism-related parental stigma may play a role if parents from racial/ethnic minoritized backgrounds experience dual stigma from autism and from membership in a marginalized group. This study examines racial/ethnic differences in autism-related stigma and compares the impact of stigma on service utilization in a large, diverse sample of US-based parents of autistic children (final sample = 764; White 41.6%, Black 16.6%, Latino/a/x/Hispanic 20.9%, Asian 7.5%, Multiracial 9.6%, Native American 1.8%, Pacific Islander 0.5%, Middle Eastern 0.2%, and Other 0.2%). Parents completed online surveys assessing affiliate and community stigma, service utilization, and perceived unmet treatment needs. Small but significant racial/ethnic group differences emerged in some aspects of stigma and service utilization. Specifically, Asian and Latino/a/x parents were less likely to fully engage in recommended services; Asian parents endorsed less service availability; Latino/a/x and multiracial parents reported more unmet needs; and Asian and White parents reported significantly more affiliate stigma. There was little indication that stigma contributed to racial/ethnic differences in service utilization, except for Asian families. Results indicate that socioeconomic factors interact with race/ethnicity to impact service use and stigma.
{"title":"Racial and ethnic group differences in service utilization in children with autism spectrum disorder: The role of parental stigma.","authors":"Karla Rivera-Figueroa, Stephanie Milan, Thyde Dumont-Mathieu, Diane Quinn, Inge-Marie Eigsti","doi":"10.1177/13623613241298043","DOIUrl":"10.1177/13623613241298043","url":null,"abstract":"<p><p>Racial and ethnic disparities in service utilization in autism are widely documented. Autism-related parental stigma may play a role if parents from racial/ethnic minoritized backgrounds experience dual stigma from autism and from membership in a marginalized group. This study examines racial/ethnic differences in autism-related stigma and compares the impact of stigma on service utilization in a large, diverse sample of US-based parents of autistic children (final sample = 764; White 41.6%, Black 16.6%, Latino/a/x/Hispanic 20.9%, Asian 7.5%, Multiracial 9.6%, Native American 1.8%, Pacific Islander 0.5%, Middle Eastern 0.2%, and Other 0.2%). Parents completed online surveys assessing affiliate and community stigma, service utilization, and perceived unmet treatment needs. Small but significant racial/ethnic group differences emerged in some aspects of stigma and service utilization. Specifically, Asian and Latino/a/x parents were less likely to fully engage in recommended services; Asian parents endorsed less service availability; Latino/a/x and multiracial parents reported more unmet needs; and Asian and White parents reported significantly more affiliate stigma. There was little indication that stigma contributed to racial/ethnic differences in service utilization, except for Asian families. Results indicate that socioeconomic factors interact with race/ethnicity to impact service use and stigma.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613241298043"},"PeriodicalIF":5.2,"publicationDate":"2024-11-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142667089","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 : 2024-11-18DOI: 10.1177/13623613241297222
Katherine Ardeleanu, Hillary Steinberg, Tamara Garfield, Samuelle Voltaire, Lindsay Shea, Maci Brown, Kyle Chvasta, Catherine Do Tan
Lay abstract: Most autism research and services focus on individuals with formal autism diagnoses. However, autism activists and self-advocates have raised awareness about the challenges that can prevent individuals from seeking or getting an autism diagnosis. We interviewed 65 queer and transgender adults who either self-identified as autistic without a formal diagnosis or who had a formal autism diagnosis. We found that participants made meaning of their autistic diagnosis and/or identity and found affirmation in this, faced significant barriers and deterrents to getting diagnosed, and experienced invalidation as both a barrier to and product of diagnosis. Due to the challenges that individuals face in getting a diagnosis, we recommend that researchers and advocates consider including self-identified autistic individuals in research and services.
{"title":"Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion.","authors":"Katherine Ardeleanu, Hillary Steinberg, Tamara Garfield, Samuelle Voltaire, Lindsay Shea, Maci Brown, Kyle Chvasta, Catherine Do Tan","doi":"10.1177/13623613241297222","DOIUrl":"https://doi.org/10.1177/13623613241297222","url":null,"abstract":"<p><strong>Lay abstract: </strong>Most autism research and services focus on individuals with formal autism diagnoses. However, autism activists and self-advocates have raised awareness about the challenges that can prevent individuals from seeking or getting an autism diagnosis. We interviewed 65 queer and transgender adults who either self-identified as autistic without a formal diagnosis or who had a formal autism diagnosis. We found that participants made meaning of their autistic diagnosis and/or identity and found affirmation in this, faced significant barriers and deterrents to getting diagnosed, and experienced invalidation as both a barrier to and product of diagnosis. Due to the challenges that individuals face in getting a diagnosis, we recommend that researchers and advocates consider including self-identified autistic individuals in research and services.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613241297222"},"PeriodicalIF":5.2,"publicationDate":"2024-11-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142646831","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 : 2024-11-16DOI: 10.1177/13623613241293046
Parker S Beckman, Maryellen Brunson McClain, Bryn Harris, Alexa Brownell, Britany M Beauchesne, Gwendolyn Davis, Jac'lyn Bera, Rabbiya Shahid
Lay abstract: Special education services are important for helping autistic students succeed, but many racially and ethnically minoritized and girl students face difficulties in getting support because they are not identified appropriately in schools. This study looks at the identification of autism in racially and ethnically minoritized and girl students across schools in the United States during the 2019-2020 school year. We found that girls are less likely to be identified compared to boys, which means they might not get the help they need. The gap between racially and ethnically minoritized students and White students in autism identification has improved slightly, but Latinx students still face challenges. We also found that where students live (their locale) affects their chances of being identified, especially for girls and Latinx students. These findings show that there are disparities in school autism identification, and understanding them can help policymakers, educators, and communities make changes to ensure all autistic students get the support they need.
{"title":"Autism disproportionality in racially and ethnically minoritized and girl students in schools.","authors":"Parker S Beckman, Maryellen Brunson McClain, Bryn Harris, Alexa Brownell, Britany M Beauchesne, Gwendolyn Davis, Jac'lyn Bera, Rabbiya Shahid","doi":"10.1177/13623613241293046","DOIUrl":"https://doi.org/10.1177/13623613241293046","url":null,"abstract":"<p><strong>Lay abstract: </strong>Special education services are important for helping autistic students succeed, but many racially and ethnically minoritized and girl students face difficulties in getting support because they are not identified appropriately in schools. This study looks at the identification of autism in racially and ethnically minoritized and girl students across schools in the United States during the 2019-2020 school year. We found that girls are less likely to be identified compared to boys, which means they might not get the help they need. The gap between racially and ethnically minoritized students and White students in autism identification has improved slightly, but Latinx students still face challenges. We also found that where students live (their locale) affects their chances of being identified, especially for girls and Latinx students. These findings show that there are disparities in school autism identification, and understanding them can help policymakers, educators, and communities make changes to ensure all autistic students get the support they need.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613241293046"},"PeriodicalIF":5.2,"publicationDate":"2024-11-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142643778","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 : 2024-11-12DOI: 10.1177/13623613241292159
Janeth Aleman-Tovar, Meghan M Burke, Edwin Monárrez, Nicole Espinosa Zaldivar
Lay abstract: To support Latinx families of autistic youth navigate school-based transition services and adult disability services, we provided a family advocacy program entitled, ASISTIR (Apoyando a nueStros hIjo/as con autiSmo obTener servIcios de tRansición; Supporting our Children with Autism to Obtain Transition Services). The ASISTIR program consisted of six, two-hour sessions and included the following topics: school-based transition planning, person-centered planning, Supplemental Security Income, Vocational Rehabilitation, and Home and Community-Based Medicaid Waiver. Twenty-nine Latinx family members completed the cohort-based ASISTIR program. After participating family members demonstrated increased knowledge of school-based transition planning and adult disability services. Participants also demonstrated increased empowerment and advocacy.
内容提要:为了帮助拉美裔自闭症青少年家庭获得学校提供的过渡服务和成人残疾服务,我们开展了一项名为 ASISTIR(Apoyando a nueStros hIjo/as con autiSmo obTener servIcios de tRansición;支持我们的自闭症儿童获得过渡服务)的家庭宣传计划。ASISTIR 计划由六节课组成,每节课两小时,包括以下主题:基于学校的过渡规划、以人为本的规划、补充保障收入、职业康复以及基于家庭和社区的医疗补助豁免。29 名拉丁裔家庭成员完成了基于群组的 ASISTIR 计划。参与计划后,家庭成员对基于学校的过渡规划和成人残疾服务的了解有所增加。参与者还表现出了更强的能力和宣传能力。
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