Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data / Katherine GOTHAM in Autism, 19-7 (October 2015)  

Public ISBD [article]  inAutism > 19-7 (October 2015) . - p.794-804 Titre : Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data Type de document : texte imprimé Auteurs : Katherine GOTHAM, Auteur ; Alison R. MARVIN, Auteur ; Julie LOUNDS TAYLOR, Auteur ; Zachary WARREN, Auteur ; Connie M. ANDERSON, Auteur ; Paul A. LAW, Auteur ; Jessica K. LAW, Auteur ; Paul H. LIPKIN, Auteur Année de publication : 2015 Article en page(s) : p.794-804 Langues : Anglais (eng) Mots-clés : adults  autism spectrum disorder  Interactive Autism Network  outcome  patient-centered outcome research Index. décimale : PER Périodiques Résumé : Using online survey data from a large sample of adults with autism spectrum disorder and legal guardians, we first report outcomes across a variety of contexts for participants with a wide range of functioning, and second, summarize these stakeholders’ priorities for future research. The sample included n = 255 self-reporting adults with autism spectrum disorder aged 18–71 years (M = 38.5 years, standard deviation = 13.1 years) and n = 143 adults with autism spectrum disorder aged 18–58 years (M = 25.0 years, standard deviation = 8.2 years) whose information was provided by legal guardians. Although the self-reporting subsample had much higher rates of employment, marriage/partnership, and independent living than are typically seen in autism spectrum disorder outcome studies, they remained underemployed and had strikingly high rates of comorbid disorders. Data on both descriptive outcomes and rated priorities converged across subsamples to indicate the need for more adult research on life skills, treatments, co-occurring conditions, and vocational and educational opportunities. Stakeholders also placed priority on improving public services, health care access, and above all, public acceptance of adults with autism spectrum disorder. Findings must be interpreted in light of the self-reporting subsample’s significant proportion of females and of later-diagnosed individuals. This study underscores the need for lifespan research; initiatives will benefit from incorporating information from the unique perspectives of adults with autism spectrum disorder and their families. En ligne : http://dx.doi.org/10.1177/1362361315583818 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=269 [article] Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data [texte imprimé] / Katherine GOTHAM, Auteur ; Alison R. MARVIN, Auteur ; Julie LOUNDS TAYLOR, Auteur ; Zachary WARREN, Auteur ; Connie M. ANDERSON, Auteur ; Paul A. LAW, Auteur ; Jessica K. LAW, Auteur ; Paul H. LIPKIN, Auteur . - 2015 . - p.794-804. Langues : Anglais (eng) in Autism > 19-7 (October 2015) . - p.794-804 Mots-clés : adults  autism spectrum disorder  Interactive Autism Network  outcome  patient-centered outcome research Index. décimale : PER Périodiques Résumé : Using online survey data from a large sample of adults with autism spectrum disorder and legal guardians, we first report outcomes across a variety of contexts for participants with a wide range of functioning, and second, summarize these stakeholders’ priorities for future research. The sample included n = 255 self-reporting adults with autism spectrum disorder aged 18–71 years (M = 38.5 years, standard deviation = 13.1 years) and n = 143 adults with autism spectrum disorder aged 18–58 years (M = 25.0 years, standard deviation = 8.2 years) whose information was provided by legal guardians. Although the self-reporting subsample had much higher rates of employment, marriage/partnership, and independent living than are typically seen in autism spectrum disorder outcome studies, they remained underemployed and had strikingly high rates of comorbid disorders. Data on both descriptive outcomes and rated priorities converged across subsamples to indicate the need for more adult research on life skills, treatments, co-occurring conditions, and vocational and educational opportunities. Stakeholders also placed priority on improving public services, health care access, and above all, public acceptance of adults with autism spectrum disorder. Findings must be interpreted in light of the self-reporting subsample’s significant proportion of females and of later-diagnosed individuals. This study underscores the need for lifespan research; initiatives will benefit from incorporating information from the unique perspectives of adults with autism spectrum disorder and their families. En ligne : http://dx.doi.org/10.1177/1362361315583818 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=269

Grandparents’ Experience of Autism Spectrum Disorder: Identifying Primary Themes and Needs / Jennifer L. HILLMAN in Journal of Autism and Developmental Disorders, 47-10 (October 2017)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 47-10 (October 2017) . - p.2957-2968 Titre : Grandparents’ Experience of Autism Spectrum Disorder: Identifying Primary Themes and Needs Type de document : texte imprimé Auteurs : Jennifer L. HILLMAN, Auteur ; Michele C. WENTZEL, Auteur ; Connie M. ANDERSON, Auteur Article en page(s) : p.2957-2968 Langues : Anglais (eng) Mots-clés : Grandparents  Autism spectrum disorder  Grandchildren  Resilience  Depression  Coping  Communication  Tantrums  Inappropriate behavior Index. décimale : PER Périodiques Résumé : Limited information is available regarding the first person perspective of grandparents of children with Autism Spectrum Disorders (ASD). In the present study, 1870 grandparents of a child with ASD participated in a nationwide, online, anonymous, 30-minute survey and responded to open-ended questions including their “greatest challenges and greatest joys” as the grandparent of a child on the autism spectrum. A grounded theory approach to qualitative analysis revealed four overarching categories: a Desire for Connection, Barriers to Care, Celebration of Progress, and Personal Reactions. Despite the presence of significant challenges grandparents often experienced positivity in their role, and engaged in radical acceptance of their grandchild as well as transformative insight and advocacy. Specific recommendations are offered to help address grandparents’ needs and capitalize upon their resilience. En ligne : https://doi.org/10.1007/s10803-017-3211-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=319 [article] Grandparents’ Experience of Autism Spectrum Disorder: Identifying Primary Themes and Needs [texte imprimé] / Jennifer L. HILLMAN, Auteur ; Michele C. WENTZEL, Auteur ; Connie M. ANDERSON, Auteur . - p.2957-2968. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 47-10 (October 2017) . - p.2957-2968 Mots-clés : Grandparents  Autism spectrum disorder  Grandchildren  Resilience  Depression  Coping  Communication  Tantrums  Inappropriate behavior Index. décimale : PER Périodiques Résumé : Limited information is available regarding the first person perspective of grandparents of children with Autism Spectrum Disorders (ASD). In the present study, 1870 grandparents of a child with ASD participated in a nationwide, online, anonymous, 30-minute survey and responded to open-ended questions including their “greatest challenges and greatest joys” as the grandparent of a child on the autism spectrum. A grounded theory approach to qualitative analysis revealed four overarching categories: a Desire for Connection, Barriers to Care, Celebration of Progress, and Personal Reactions. Despite the presence of significant challenges grandparents often experienced positivity in their role, and engaged in radical acceptance of their grandchild as well as transformative insight and advocacy. Specific recommendations are offered to help address grandparents’ needs and capitalize upon their resilience. En ligne : https://doi.org/10.1007/s10803-017-3211-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=319

It's a Battle and a Blessing: The Experience and Needs of Custodial Grandparents of Children with Autism Spectrum Disorder / Jennifer L. HILLMAN in Journal of Autism and Developmental Disorders, 49-1 (January 2019)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 49-1 (January 2019) . - p.260-269 Titre : It's a Battle and a Blessing: The Experience and Needs of Custodial Grandparents of Children with Autism Spectrum Disorder Type de document : texte imprimé Auteurs : Jennifer L. HILLMAN, Auteur ; Connie M. ANDERSON, Auteur Article en page(s) : p.260-269 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder  Caregiving  Coping  Custodial grandparents  Disabilities  Grandchildren  Kin networks  Respite  Strength-based approach  Tantrums  Wisdom Index. décimale : PER Périodiques Résumé : We know little about custodial grandparents of children with autism spectrum disorder (ASD) who offer a vital social safety net. 117 custodial grandparents of children with ASD from 37 states completed an online survey with open-ended questions about their "greatest challenges and joys" as grandparent. Grounded theory analysis revealed four categories of experience (Issues with Adult Children, Caregiving Burden, Coping, & Wisdom) explained by 15 themes. Grandparents' stressors encompassed custody issues, ASD problem behaviors like tantrums and eloping, insufficient ASD services, financial burden, 24/7 caregiving demands, social isolation, and fears for the future. Grandparents' coping included celebrations of progress, unconditional love, faith, and a positive focus. Grandparents' wisdom included patience and insight. Recommendations to support these caregivers are provided. En ligne : http://dx.doi.org/10.1007/s10803-018-3761-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=377 [article] It's a Battle and a Blessing: The Experience and Needs of Custodial Grandparents of Children with Autism Spectrum Disorder [texte imprimé] / Jennifer L. HILLMAN, Auteur ; Connie M. ANDERSON, Auteur . - p.260-269. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 49-1 (January 2019) . - p.260-269 Mots-clés : Autism spectrum disorder  Caregiving  Coping  Custodial grandparents  Disabilities  Grandchildren  Kin networks  Respite  Strength-based approach  Tantrums  Wisdom Index. décimale : PER Périodiques Résumé : We know little about custodial grandparents of children with autism spectrum disorder (ASD) who offer a vital social safety net. 117 custodial grandparents of children with ASD from 37 states completed an online survey with open-ended questions about their "greatest challenges and joys" as grandparent. Grounded theory analysis revealed four categories of experience (Issues with Adult Children, Caregiving Burden, Coping, & Wisdom) explained by 15 themes. Grandparents' stressors encompassed custody issues, ASD problem behaviors like tantrums and eloping, insufficient ASD services, financial burden, 24/7 caregiving demands, social isolation, and fears for the future. Grandparents' coping included celebrations of progress, unconditional love, faith, and a positive focus. Grandparents' wisdom included patience and insight. Recommendations to support these caregivers are provided. En ligne : http://dx.doi.org/10.1007/s10803-018-3761-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=377

Mood Disorders in Mothers of Children on the Autism Spectrum Are Associated with Higher Functioning Autism / Roma A. VASA in Autism Research and Treatment, (July 2012)  

Public ISBD [article]  inAutism Research and Treatment > (July 2012) . - 8 p. Titre : Mood Disorders in Mothers of Children on the Autism Spectrum Are Associated with Higher Functioning Autism Type de document : texte imprimé Auteurs : Roma A. VASA, Auteur ; Connie M. ANDERSON, Auteur ; Alison R. MARVIN, Auteur ; Rebecca E. ROSENBERG, Auteur ; J. Kiely LAW, Auteur ; Julia THORN, Auteur ; Geeta SARPHARE, Auteur ; Paul A. LAW, Auteur Année de publication : 2012 Article en page(s) : 8 p. Langues : Anglais (eng) Mots-clés : Trouble de l'humeur Index. décimale : PER Périodiques Résumé : Mood disorders occur more frequently in family members of individuals with autism spectrum disorders (ASD) than in the general population. There may be associations between maternal mood disorder history patterns and specific ASD phenotypes. We therefore examined the relationship between maternal mood disorders and child autism spectrum disorders in 998 mother-child dyads enrolled in a national online autism registry and database. Mothers of children with ASD completed online questionnaires addressing their child’s ASD as well as their own mood disorder history. In multivariate logistic regression models of ASD diagnoses, the odds of an Asperger disorder versus autistic disorder diagnosis were higher among those children whose mothers had a lifetime history of bipolar disorder (OR 2.11, CI 1.20, 3.69) or depression (OR 1.62, CI 1.19, 2.19). Further, maternal mood disorder onset before first pregnancy was associated with higher odds (OR 2.35, CI 1.48, 3.73) of an Asperger versus autism diagnosis among this sample of children with ASD. These data suggest that differences in maternal mood disorder history may be associated with ASD phenotype in offspring. En ligne : http://dx.doi.org/10.1155/2012/435646 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=181 [article] Mood Disorders in Mothers of Children on the Autism Spectrum Are Associated with Higher Functioning Autism [texte imprimé] / Roma A. VASA, Auteur ; Connie M. ANDERSON, Auteur ; Alison R. MARVIN, Auteur ; Rebecca E. ROSENBERG, Auteur ; J. Kiely LAW, Auteur ; Julia THORN, Auteur ; Geeta SARPHARE, Auteur ; Paul A. LAW, Auteur . - 2012 . - 8 p. Langues : Anglais (eng) in Autism Research and Treatment > (July 2012) . - 8 p. Mots-clés : Trouble de l'humeur Index. décimale : PER Périodiques Résumé : Mood disorders occur more frequently in family members of individuals with autism spectrum disorders (ASD) than in the general population. There may be associations between maternal mood disorder history patterns and specific ASD phenotypes. We therefore examined the relationship between maternal mood disorders and child autism spectrum disorders in 998 mother-child dyads enrolled in a national online autism registry and database. Mothers of children with ASD completed online questionnaires addressing their child’s ASD as well as their own mood disorder history. In multivariate logistic regression models of ASD diagnoses, the odds of an Asperger disorder versus autistic disorder diagnosis were higher among those children whose mothers had a lifetime history of bipolar disorder (OR 2.11, CI 1.20, 3.69) or depression (OR 1.62, CI 1.19, 2.19). Further, maternal mood disorder onset before first pregnancy was associated with higher odds (OR 2.35, CI 1.48, 3.73) of an Asperger versus autism diagnosis among this sample of children with ASD. These data suggest that differences in maternal mood disorder history may be associated with ASD phenotype in offspring. En ligne : http://dx.doi.org/10.1155/2012/435646 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=181

Risk factors for bullying among children with autism spectrum disorders / Benjamin ZABLOTSKY in Autism, 18-4 (May 2014)  

Public ISBD [article]  inAutism > 18-4 (May 2014) . - p.419-427 Titre : Risk factors for bullying among children with autism spectrum disorders Type de document : texte imprimé Auteurs : Benjamin ZABLOTSKY, Auteur ; Catherine P. BRADSHAW, Auteur ; Connie M. ANDERSON, Auteur ; Paul A. LAW, Auteur Article en page(s) : p.419-427 Langues : Anglais (eng) Mots-clés : autism spectrum disorder  bullying  schools  special needs Index. décimale : PER Périodiques Résumé : Although children with disabilities have been found to be at an increased risk of bullying, there are limited studies investigating predictors of bullying involvement in children with autism spectrum disorders. The current study presents findings from 1221 parents of children diagnosed with autism spectrum disorder who were selected from a national web-based registry. Parents completed a survey dedicated to the school and bullying experiences of their child, and multivariate logistic regression analyses were conducted to identify child and school risk factors for involvement as victim, bully, or bully–victim. Additional analyses examined the risk of bullying involvement based on the amount of time spent in general education classrooms. Children diagnosed with Asperger’s disorder, attending a public school or a school with a general education population, were at the greatest risk of being victimized in the past month. Children with comorbid conditions and a high level of autistic traits were the most likely to be victims, bullies, and bully–victims. Finally, children in full inclusion classrooms were more likely to be victimized than those who spend the majority of their time in special education settings. Future research studies should be invested in finding appropriate supports for children with autism spectrum disorder placed in inclusive settings. En ligne : http://dx.doi.org/10.1177/1362361313477920 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=232 [article] Risk factors for bullying among children with autism spectrum disorders [texte imprimé] / Benjamin ZABLOTSKY, Auteur ; Catherine P. BRADSHAW, Auteur ; Connie M. ANDERSON, Auteur ; Paul A. LAW, Auteur . - p.419-427. Langues : Anglais (eng) in Autism > 18-4 (May 2014) . - p.419-427 Mots-clés : autism spectrum disorder  bullying  schools  special needs Index. décimale : PER Périodiques Résumé : Although children with disabilities have been found to be at an increased risk of bullying, there are limited studies investigating predictors of bullying involvement in children with autism spectrum disorders. The current study presents findings from 1221 parents of children diagnosed with autism spectrum disorder who were selected from a national web-based registry. Parents completed a survey dedicated to the school and bullying experiences of their child, and multivariate logistic regression analyses were conducted to identify child and school risk factors for involvement as victim, bully, or bully–victim. Additional analyses examined the risk of bullying involvement based on the amount of time spent in general education classrooms. Children diagnosed with Asperger’s disorder, attending a public school or a school with a general education population, were at the greatest risk of being victimized in the past month. Children with comorbid conditions and a high level of autistic traits were the most likely to be victims, bullies, and bully–victims. Finally, children in full inclusion classrooms were more likely to be victimized than those who spend the majority of their time in special education settings. Future research studies should be invested in finding appropriate supports for children with autism spectrum disorder placed in inclusive settings. En ligne : http://dx.doi.org/10.1177/1362361313477920 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=232

The Association Between Child Autism Symptomatology, Maternal Quality of Life, and Risk for Depression / Benjamin ZABLOTSKY in Journal of Autism and Developmental Disorders, 43-8 (August 2013)  

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Verification of Parent-Report of Child Autism Spectrum Disorder Diagnosis to a Web-Based Autism Registry / Amy M. DANIELS in Journal of Autism and Developmental Disorders, 42-2 (February 2012)  

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Young Adults on the Autism Spectrum and Early Employment-Related Experiences: Aspirations and Obstacles / Connie M. ANDERSON in Journal of Autism and Developmental Disorders, 51-1 (January 2021)  

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Young Adults on the Autism Spectrum at College: Successes and Stumbling Blocks / Connie M. ANDERSON in Journal of Autism and Developmental Disorders, 47-10 (October 2017)  

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