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'I?m not just being difficult .?.?. I?m finding it difficult': A qualitative approach to understanding experiences of autistic parents when interacting with statutory services regarding their autistic child / Sarah RADEV in Autism, 28-6 (June 2024)
[article]
Titre : 'I?m not just being difficult .?.?. I?m finding it difficult': A qualitative approach to understanding experiences of autistic parents when interacting with statutory services regarding their autistic child Type de document : Texte imprimé et/ou numérique Auteurs : Sarah RADEV, Auteur ; Megan FREETH, Auteur ; Andrew R. THOMPSON, Auteur Article en page(s) : p.1394-1404 Langues : Anglais (eng) Mots-clés : adults advocacy autism spectrum disorders education services health services parents qualitative research schoolage children Index. décimale : PER Périodiques Résumé : The experiences of autistic parents when interacting with statutory services for their autistic children is not well understood. This study investigates the experiences of autistic parents' interactions with statutory services, including education and healthcare, in relation to their autistic children. Interpretative Phenomenological Analysis was used to investigate their experiences. Ten autistic mothers of autistic children in mainstream education completed semi-structured interviews, which were co-developed with autistic parents. Two superordinate themes were developed: (1) The wider system is the problem and (2) Feeling judged and stigmatised. While Theme 1 demonstrates some similarities in the experiences of autistic parents to that of non-autistic parents in previous studies, theme 2 is unique to autistic parents who may feel that they are being treated differently. These themes indicate the importance of training encouraging a strength-based rather than deficit-based understanding of autism. Participants highlighted the wider system is the problem rather than individual professionals, and that it places some families at a disadvantage. Lay abstract Becoming a parent is an important part of adult life for many people, including autistic people. Many parents of autistic children can find getting the right support for their children difficult. Knowledge is currently poor about how this is experienced by parents who are also autistic themselves. The main researcher is also an autistic parent to an autistic child and other experts by experience were consulted in the development of the study. Ten autistic mothers with autistic children in mainstream education were interviewed about their experiences of seeking support for their autistic children from services such as healthcare and education. Participants talked about finding the overall system being the main problem, rather than the individuals working in it, and about needing to fight to get the right support for their children. These are points that non-autistic parents have also raised before. Participants also talked about feeling judged and stigmatised for being autistic, and about struggling to manage sensory and communication difficulties, which is something that has not been talked about by non-autistic parents. Improving services to offer better support to autistic families is important and can be achieved through better training. This training should be developed and run by autistic adults and focus on positive aspects of autism, rather than negative. En ligne : https://dx.doi.org/10.1177/13623613231212794 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529
in Autism > 28-6 (June 2024) . - p.1394-1404[article] 'I?m not just being difficult .?.?. I?m finding it difficult': A qualitative approach to understanding experiences of autistic parents when interacting with statutory services regarding their autistic child [Texte imprimé et/ou numérique] / Sarah RADEV, Auteur ; Megan FREETH, Auteur ; Andrew R. THOMPSON, Auteur . - p.1394-1404.
Langues : Anglais (eng)
in Autism > 28-6 (June 2024) . - p.1394-1404
Mots-clés : adults advocacy autism spectrum disorders education services health services parents qualitative research schoolage children Index. décimale : PER Périodiques Résumé : The experiences of autistic parents when interacting with statutory services for their autistic children is not well understood. This study investigates the experiences of autistic parents' interactions with statutory services, including education and healthcare, in relation to their autistic children. Interpretative Phenomenological Analysis was used to investigate their experiences. Ten autistic mothers of autistic children in mainstream education completed semi-structured interviews, which were co-developed with autistic parents. Two superordinate themes were developed: (1) The wider system is the problem and (2) Feeling judged and stigmatised. While Theme 1 demonstrates some similarities in the experiences of autistic parents to that of non-autistic parents in previous studies, theme 2 is unique to autistic parents who may feel that they are being treated differently. These themes indicate the importance of training encouraging a strength-based rather than deficit-based understanding of autism. Participants highlighted the wider system is the problem rather than individual professionals, and that it places some families at a disadvantage. Lay abstract Becoming a parent is an important part of adult life for many people, including autistic people. Many parents of autistic children can find getting the right support for their children difficult. Knowledge is currently poor about how this is experienced by parents who are also autistic themselves. The main researcher is also an autistic parent to an autistic child and other experts by experience were consulted in the development of the study. Ten autistic mothers with autistic children in mainstream education were interviewed about their experiences of seeking support for their autistic children from services such as healthcare and education. Participants talked about finding the overall system being the main problem, rather than the individuals working in it, and about needing to fight to get the right support for their children. These are points that non-autistic parents have also raised before. Participants also talked about feeling judged and stigmatised for being autistic, and about struggling to manage sensory and communication difficulties, which is something that has not been talked about by non-autistic parents. Improving services to offer better support to autistic families is important and can be achieved through better training. This training should be developed and run by autistic adults and focus on positive aspects of autism, rather than negative. En ligne : https://dx.doi.org/10.1177/13623613231212794 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 Trajectories and correlates of special education supports for youth with autism spectrum disorder and psychiatric comparisons / Christine J SPAULDING in Autism, 21-4 (May 2017)
[article]
Titre : Trajectories and correlates of special education supports for youth with autism spectrum disorder and psychiatric comparisons Type de document : Texte imprimé et/ou numérique Auteurs : Christine J SPAULDING, Auteur ; Matthew D LERNER, Auteur ; Kenneth D GADOW, Auteur Article en page(s) : p.423-435 Langues : Anglais (eng) Mots-clés : autism spectrum disorders education services school-aged children special education Index. décimale : PER Périodiques Résumé : Relatively little is known about patterns of school-based supportive services for youth with autism spectrum disorder. This study describes these supportive services and their correlates, both cross-sectionally and retrospectively, in a large sample (N?=?283) of 6- to 18-?year-old youth. To assess whether special education designation and classroom placement patterns were peculiar to autism spectrum disorder, we also conducted analyses comparing youth with autism spectrum disorder to those with other psychiatric diagnoses (N?=?1088). In higher grades, the relative quantity of three common supportive services received by youth with autism spectrum disorder decreased, while total supportive service quantity remained stable over time. Youth with autism spectrum disorder were more likely to receive a special education designation and were placed in less inclusive classroom settings than youth with other psychiatric diagnoses. These findings suggest that as youth with autism spectrum disorder reach higher grades, changes in service provision occur in terms of both time and quantity. En ligne : http://dx.doi.org/10.1177/1362361316645428 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=305
in Autism > 21-4 (May 2017) . - p.423-435[article] Trajectories and correlates of special education supports for youth with autism spectrum disorder and psychiatric comparisons [Texte imprimé et/ou numérique] / Christine J SPAULDING, Auteur ; Matthew D LERNER, Auteur ; Kenneth D GADOW, Auteur . - p.423-435.
Langues : Anglais (eng)
in Autism > 21-4 (May 2017) . - p.423-435
Mots-clés : autism spectrum disorders education services school-aged children special education Index. décimale : PER Périodiques Résumé : Relatively little is known about patterns of school-based supportive services for youth with autism spectrum disorder. This study describes these supportive services and their correlates, both cross-sectionally and retrospectively, in a large sample (N?=?283) of 6- to 18-?year-old youth. To assess whether special education designation and classroom placement patterns were peculiar to autism spectrum disorder, we also conducted analyses comparing youth with autism spectrum disorder to those with other psychiatric diagnoses (N?=?1088). In higher grades, the relative quantity of three common supportive services received by youth with autism spectrum disorder decreased, while total supportive service quantity remained stable over time. Youth with autism spectrum disorder were more likely to receive a special education designation and were placed in less inclusive classroom settings than youth with other psychiatric diagnoses. These findings suggest that as youth with autism spectrum disorder reach higher grades, changes in service provision occur in terms of both time and quantity. En ligne : http://dx.doi.org/10.1177/1362361316645428 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=305 Accommodations and support services preferred by college students with autism spectrum disorder / Amy L. ACCARDO in Autism, 23-3 (April 2019)
[article]
Titre : Accommodations and support services preferred by college students with autism spectrum disorder Type de document : Texte imprimé et/ou numérique Auteurs : Amy L. ACCARDO, Auteur ; S. J. KUDER, Auteur ; J. WOODRUFF, Auteur Article en page(s) : p.574-583 Langues : Anglais (eng) Mots-clés : accommodations autism spectrum disorders college education services transition Index. décimale : PER Périodiques Résumé : This 2-year study investigated the accommodations and support services preferred by college students with autism spectrum disorder using sequential mixed methods non-experimental survey and semi-structured follow-up interviews. Students with autism spectrum disorder reported using both academic and non-academic supports with frequency (e.g. extended time on exams, transition program), using academic supports in line with other disability populations, and using non-academic supports connecting them one-to-one with a faculty member or coach as preferred (e.g. academic coach, counselor, faculty mentor). Findings suggest a need for university disability service centers, counseling services, and faculty to work together to develop systematic support systems for college students with autism spectrum disorder. En ligne : http://dx.doi.org/10.1177/1362361318760490 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=392
in Autism > 23-3 (April 2019) . - p.574-583[article] Accommodations and support services preferred by college students with autism spectrum disorder [Texte imprimé et/ou numérique] / Amy L. ACCARDO, Auteur ; S. J. KUDER, Auteur ; J. WOODRUFF, Auteur . - p.574-583.
Langues : Anglais (eng)
in Autism > 23-3 (April 2019) . - p.574-583
Mots-clés : accommodations autism spectrum disorders college education services transition Index. décimale : PER Périodiques Résumé : This 2-year study investigated the accommodations and support services preferred by college students with autism spectrum disorder using sequential mixed methods non-experimental survey and semi-structured follow-up interviews. Students with autism spectrum disorder reported using both academic and non-academic supports with frequency (e.g. extended time on exams, transition program), using academic supports in line with other disability populations, and using non-academic supports connecting them one-to-one with a faculty member or coach as preferred (e.g. academic coach, counselor, faculty mentor). Findings suggest a need for university disability service centers, counseling services, and faculty to work together to develop systematic support systems for college students with autism spectrum disorder. En ligne : http://dx.doi.org/10.1177/1362361318760490 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=392 A community-engaged approach to examining barriers and facilitators to accessing autism services in Korean immigrant families / V. C. FONG in Autism, 26-2 (February 2022)
[article]
Titre : A community-engaged approach to examining barriers and facilitators to accessing autism services in Korean immigrant families Type de document : Texte imprimé et/ou numérique Auteurs : V. C. FONG, Auteur ; B. S. LEE, Auteur ; G. IAROCCI, Auteur Article en page(s) : p.525-537 Langues : Anglais (eng) Mots-clés : autism spectrum disorders community engagement education services family functioning and support policy qualitative research social services of interest with respect to the research, authorship, and/or publication of this article. Index. décimale : PER Périodiques Résumé : Perceptions and experiences of culturally and linguistically diverse groups in accessing autism services in Canada are extremely limited. Thus, this study partnered with a community member to explore Korean immigrant parents' perceptions of barriers and facilitators to accessing autism services in British Columbia, Canada. Interviews were conducted with 20 Korean parents of autistic children. Barriers and facilitators at the system, provider, and family/cultural level were identified. Barriers at the system level included delays and waitlists for services, and ineffective school policies to address child behavioral challenges. At the provider level, barriers included a lack of qualified professionals, negative attitudes, and lack of guidance navigating services. For family/cultural-related barriers, these included language and communication difficulties, out-of-pocket costs, and stigma impeded service access. Facilitators at the system level included family-centered care and prioritization of mental health supports. At the provider level, strengths included culturally competent and bilingual professionals. The family/cultural-related facilitators identified were informal support networks, characteristics of the parent, and connections to cultural community organizations. The findings emphasize the need to understand and consider diverse experiences, preferences, and values in the design and provision of autism services for families and their children. En ligne : http://dx.doi.org/10.1177/13623613211034067 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=452
in Autism > 26-2 (February 2022) . - p.525-537[article] A community-engaged approach to examining barriers and facilitators to accessing autism services in Korean immigrant families [Texte imprimé et/ou numérique] / V. C. FONG, Auteur ; B. S. LEE, Auteur ; G. IAROCCI, Auteur . - p.525-537.
Langues : Anglais (eng)
in Autism > 26-2 (February 2022) . - p.525-537
Mots-clés : autism spectrum disorders community engagement education services family functioning and support policy qualitative research social services of interest with respect to the research, authorship, and/or publication of this article. Index. décimale : PER Périodiques Résumé : Perceptions and experiences of culturally and linguistically diverse groups in accessing autism services in Canada are extremely limited. Thus, this study partnered with a community member to explore Korean immigrant parents' perceptions of barriers and facilitators to accessing autism services in British Columbia, Canada. Interviews were conducted with 20 Korean parents of autistic children. Barriers and facilitators at the system, provider, and family/cultural level were identified. Barriers at the system level included delays and waitlists for services, and ineffective school policies to address child behavioral challenges. At the provider level, barriers included a lack of qualified professionals, negative attitudes, and lack of guidance navigating services. For family/cultural-related barriers, these included language and communication difficulties, out-of-pocket costs, and stigma impeded service access. Facilitators at the system level included family-centered care and prioritization of mental health supports. At the provider level, strengths included culturally competent and bilingual professionals. The family/cultural-related facilitators identified were informal support networks, characteristics of the parent, and connections to cultural community organizations. The findings emphasize the need to understand and consider diverse experiences, preferences, and values in the design and provision of autism services for families and their children. En ligne : http://dx.doi.org/10.1177/13623613211034067 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=452 Family navigation to increase evaluation for autism spectrum disorder in toddlers: Screening and Linkage to Services for Autism pragmatic randomized trial / Carolyn G. DIGUISEPPI in Autism, 25-4 (May 2021)
[article]
Titre : Family navigation to increase evaluation for autism spectrum disorder in toddlers: Screening and Linkage to Services for Autism pragmatic randomized trial Type de document : Texte imprimé et/ou numérique Auteurs : Carolyn G. DIGUISEPPI, Auteur ; Steven A. ROSENBERG, Auteur ; Margaret A. TOMCHO, Auteur ; Kathryn COLBORN, Auteur ; Kristina HIGHTSHOE, Auteur ; Silvia GUTIERREZ-RAGHUNATH, Auteur ; Jeanette M. CORDOVA, Auteur ; Jodi K. DOOLING-LITFIN, Auteur ; Cordelia ROBINSON ROSENBERG, Auteur Article en page(s) : p.946-957 Langues : Anglais (eng) Mots-clés : autism spectrum disorders diagnosis early intervention education services patient navigation toddlers underserved populations Index. décimale : PER Périodiques Résumé : Young children with autism spectrum disorder can benefit from early detection and intervention to moderate autism spectrum disorder's effect on their development. Routine screening with standardized instruments facilitates early identification. However, many screen-positive children do not receive referrals for evaluation, complete diagnostic evaluations, or engage in services. This is especially true for children of color and those from less educated or low-income families. The Screening and Linkage to Services for Autism trial evaluated the effect of family navigation on referral and evaluation for autism spectrum disorder in screen-positive toddlers. The trial was conducted in an urban, low-income population. It was designed to test "real-world" implementation of family navigation. We randomly assigned 275 children aged 16-30?months with an initial positive autism spectrum disorder screen to receive navigation if indicated or usual care. Navigation increased the number of at-risk toddlers who were evaluated for autism spectrum disorder. It also improved the quality of autism spectrum disorder screening in primary care clinics. However, many children failed to receive indicated referrals for evaluation. Navigation did not improve referral rates. Furthermore, nearly half of families who were potentially eligible for navigation could not be contacted. Other ways of structuring the navigation program may be necessary to improve families' access to and acceptance of navigation, especially in the setting of financial, cultural, and linguistic barriers. Our trial nevertheless showed that family navigation may be an important tool for reducing systemic inequalities in the early identification and treatment of young children with autism spectrum disorder. En ligne : http://dx.doi.org/10.1177/1362361320974175 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444
in Autism > 25-4 (May 2021) . - p.946-957[article] Family navigation to increase evaluation for autism spectrum disorder in toddlers: Screening and Linkage to Services for Autism pragmatic randomized trial [Texte imprimé et/ou numérique] / Carolyn G. DIGUISEPPI, Auteur ; Steven A. ROSENBERG, Auteur ; Margaret A. TOMCHO, Auteur ; Kathryn COLBORN, Auteur ; Kristina HIGHTSHOE, Auteur ; Silvia GUTIERREZ-RAGHUNATH, Auteur ; Jeanette M. CORDOVA, Auteur ; Jodi K. DOOLING-LITFIN, Auteur ; Cordelia ROBINSON ROSENBERG, Auteur . - p.946-957.
Langues : Anglais (eng)
in Autism > 25-4 (May 2021) . - p.946-957
Mots-clés : autism spectrum disorders diagnosis early intervention education services patient navigation toddlers underserved populations Index. décimale : PER Périodiques Résumé : Young children with autism spectrum disorder can benefit from early detection and intervention to moderate autism spectrum disorder's effect on their development. Routine screening with standardized instruments facilitates early identification. However, many screen-positive children do not receive referrals for evaluation, complete diagnostic evaluations, or engage in services. This is especially true for children of color and those from less educated or low-income families. The Screening and Linkage to Services for Autism trial evaluated the effect of family navigation on referral and evaluation for autism spectrum disorder in screen-positive toddlers. The trial was conducted in an urban, low-income population. It was designed to test "real-world" implementation of family navigation. We randomly assigned 275 children aged 16-30?months with an initial positive autism spectrum disorder screen to receive navigation if indicated or usual care. Navigation increased the number of at-risk toddlers who were evaluated for autism spectrum disorder. It also improved the quality of autism spectrum disorder screening in primary care clinics. However, many children failed to receive indicated referrals for evaluation. Navigation did not improve referral rates. Furthermore, nearly half of families who were potentially eligible for navigation could not be contacted. Other ways of structuring the navigation program may be necessary to improve families' access to and acceptance of navigation, especially in the setting of financial, cultural, and linguistic barriers. Our trial nevertheless showed that family navigation may be an important tool for reducing systemic inequalities in the early identification and treatment of young children with autism spectrum disorder. En ligne : http://dx.doi.org/10.1177/1362361320974175 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444 Implementation of school-based services for students with autism: Barriers and facilitators across urban and rural districts and phases of implementation / J. SUHRHEINRICH in Autism, 25-8 (November 2021)
PermalinkEmbedding school cultures and climates that promote evidence-based practice implementation for youth with autism: A qualitative study / Nathaniel J. WILLIAMS in Autism, 25-4 (May 2021)
PermalinkProfiles and academic trajectories of cognitively gifted children with autism spectrum disorder / M. K. CAIN in Autism, 23-7 (October 2019)
PermalinkPractice-driven research for statewide scale up: Implementation outcomes of the California Autism Professional Training and Information Network / Jessica SUHRHEINRICH in Autism, 26-3 (April 2022)
PermalinkSupporting tamariki takiw?tanga M?ori (autistic M?ori children): Exploring the experience of early childhood educators / Jessica TUPOU in Autism, 28-3 (March 2024)
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