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

Elopement Patterns and Caregiver Strategies / Allan M. ANDERSEN in Journal of Autism and Developmental Disorders, 50-6 (June 2020)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 50-6 (June 2020) . - p.2053-2063 Titre : Elopement Patterns and Caregiver Strategies Type de document : texte imprimé Auteurs : Allan M. ANDERSEN, Auteur ; J. Kiely LAW, Auteur ; Alison R. MARVIN, Auteur ; Paul H. LIPKIN, Auteur Article en page(s) : p.2053-2063 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder  Elopement  Injury  Mortality  Wandering Index. décimale : PER Périodiques Résumé : The Interactive Autism Network (IAN) administered a survey to caregivers of children with Autism Spectrum Disorder (ASD) on their interventions for elopement behavior (EB). Data from 526 respondents were analyzed. Most families reported multiple interventions for EB and rated interventions overall as effective but burdensome. Several interventions such as fencing and window locks had favorable effectiveness/burden profiles. Tracking devices were used infrequently and rated as having low effectiveness. Behavioral specialists were commonly used, rated as effective, and most often provided by insurance. Medications were rated as having low effectiveness for EB, whether taken off-label for EB or for other reasons. Further study is needed to identify EB interventions that are effective, affordable, and easy to implement are needed. En ligne : http://dx.doi.org/10.1007/s10803-019-03961-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=425 [article] Elopement Patterns and Caregiver Strategies [texte imprimé] / Allan M. ANDERSEN, Auteur ; J. Kiely LAW, Auteur ; Alison R. MARVIN, Auteur ; Paul H. LIPKIN, Auteur . - p.2053-2063. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 50-6 (June 2020) . - p.2053-2063 Mots-clés : Autism Spectrum Disorder  Elopement  Injury  Mortality  Wandering Index. décimale : PER Périodiques Résumé : The Interactive Autism Network (IAN) administered a survey to caregivers of children with Autism Spectrum Disorder (ASD) on their interventions for elopement behavior (EB). Data from 526 respondents were analyzed. Most families reported multiple interventions for EB and rated interventions overall as effective but burdensome. Several interventions such as fencing and window locks had favorable effectiveness/burden profiles. Tracking devices were used infrequently and rated as having low effectiveness. Behavioral specialists were commonly used, rated as effective, and most often provided by insurance. Medications were rated as having low effectiveness for EB, whether taken off-label for EB or for other reasons. Further study is needed to identify EB interventions that are effective, affordable, and easy to implement are needed. En ligne : http://dx.doi.org/10.1007/s10803-019-03961-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=425

Epilepsy and Autism Severity: A Study of 6,975 Children / Joshua B. EWEN in Autism Research, 12-8 (August 2019)  

Public ISBD [article]  inAutism Research > 12-8 (August 2019) . - p.1251-1259 Titre : Epilepsy and Autism Severity: A Study of 6,975 Children Type de document : texte imprimé Auteurs : Joshua B. EWEN, Auteur ; Alison R. MARVIN, Auteur ; J. Kiely LAW, Auteur ; Paul H. LIPKIN, Auteur Article en page(s) : p.1251-1259 Langues : Anglais (eng) Mots-clés : effect size  epilepsy  regression  risk factor  severity Index. décimale : PER Périodiques Résumé : Epilepsy is known to occur in a higher-than-expected proportion of individuals with autism spectrum disorders (ASDs). Prior studies of this heterogeneous disorder have suggested that intelligence quotient (IQ) may drive this relationship. Because intellectual disability (ID) is, independently of ASD, a risk factor for epilepsy, current literature calls into question the long-understood unique relationship between ASD and epilepsy. Second, data have been unclear about whether developmental regression in ASD is associated with epilepsy. Using two cohorts from an online research registry, totaling 6,975 children with ASD, we examined the independent role of four ASD severity measures in driving the relationship with epilepsy: ID, language impairment, core ASD symptom severity, and motor dysfunction, controlling for two known relevant factors: age and sex. We also examined whether developmental regression and epilepsy have an independent statistical link. All four ASD severity factors showed independent statistical associations with epilepsy in one cohort, and three in the other. ID showed the largest relative risk (RR) in both cohorts. Effect sizes were modest. Regression similarly showed an independent statistical association with epilepsy, but with small effect size. Similar to previous work, ID showed the greatest contribution to RR for epilepsy among children with ASD. However, other ASD severity markers showed statistical associations, demonstrating that the ASD-epilepsy association is not reducible to the effect of ID. Inconsistencies in the literature may be due to underpowered studies, yet moving forward with larger-n studies, clinical significance and scientific relevance may be dictated by effect size and not merely statistical significance. Autism Res 2019, 12: 1251-1259. (c) 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Epilepsy is known to occur more often in individuals with autism spectrum disorders (ASDs) than is the case in the general population. The association between ASD and epilepsy is of interest because studying the two disorders in combination may help advance our understanding of genetic, molecular, and cellular mechanisms-as well as therapies-for both. Recent studies have suggested that intelligence quotient (IQ) alone in individuals with ASD may account for the increased prevalence of epilepsy. However, our approach was to look at a range of severity factors relevant to ASD and to look for correlations between each severity factor and epilepsy, within two large samples of children with ASD. In summary, we found that each severity factor-presence of intellectual disability, presence of language atypicalities, ASD-specific symptoms severity, and presence of motor issues-independently predicted a small increased risk for epilepsy, countering the argument that IQ alone is a risk factor. We also examined whether epilepsy is associated with developmental regression. Although severe epilepsy syndromes such as Landau-Kleffner syndrome are known to cause autistic-like symptoms following developmental regression, there is controversy about whether other forms of epilepsy are associated with the more common developmental regression seen in many young children with epilepsy. Indeed, we found a small association between epilepsy and developmental regression. En ligne : http://dx.doi.org/10.1002/aur.2132 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=405 [article] Epilepsy and Autism Severity: A Study of 6,975 Children [texte imprimé] / Joshua B. EWEN, Auteur ; Alison R. MARVIN, Auteur ; J. Kiely LAW, Auteur ; Paul H. LIPKIN, Auteur . - p.1251-1259. Langues : Anglais (eng) in Autism Research > 12-8 (August 2019) . - p.1251-1259 Mots-clés : effect size  epilepsy  regression  risk factor  severity Index. décimale : PER Périodiques Résumé : Epilepsy is known to occur in a higher-than-expected proportion of individuals with autism spectrum disorders (ASDs). Prior studies of this heterogeneous disorder have suggested that intelligence quotient (IQ) may drive this relationship. Because intellectual disability (ID) is, independently of ASD, a risk factor for epilepsy, current literature calls into question the long-understood unique relationship between ASD and epilepsy. Second, data have been unclear about whether developmental regression in ASD is associated with epilepsy. Using two cohorts from an online research registry, totaling 6,975 children with ASD, we examined the independent role of four ASD severity measures in driving the relationship with epilepsy: ID, language impairment, core ASD symptom severity, and motor dysfunction, controlling for two known relevant factors: age and sex. We also examined whether developmental regression and epilepsy have an independent statistical link. All four ASD severity factors showed independent statistical associations with epilepsy in one cohort, and three in the other. ID showed the largest relative risk (RR) in both cohorts. Effect sizes were modest. Regression similarly showed an independent statistical association with epilepsy, but with small effect size. Similar to previous work, ID showed the greatest contribution to RR for epilepsy among children with ASD. However, other ASD severity markers showed statistical associations, demonstrating that the ASD-epilepsy association is not reducible to the effect of ID. Inconsistencies in the literature may be due to underpowered studies, yet moving forward with larger-n studies, clinical significance and scientific relevance may be dictated by effect size and not merely statistical significance. Autism Res 2019, 12: 1251-1259. (c) 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Epilepsy is known to occur more often in individuals with autism spectrum disorders (ASDs) than is the case in the general population. The association between ASD and epilepsy is of interest because studying the two disorders in combination may help advance our understanding of genetic, molecular, and cellular mechanisms-as well as therapies-for both. Recent studies have suggested that intelligence quotient (IQ) alone in individuals with ASD may account for the increased prevalence of epilepsy. However, our approach was to look at a range of severity factors relevant to ASD and to look for correlations between each severity factor and epilepsy, within two large samples of children with ASD. In summary, we found that each severity factor-presence of intellectual disability, presence of language atypicalities, ASD-specific symptoms severity, and presence of motor issues-independently predicted a small increased risk for epilepsy, countering the argument that IQ alone is a risk factor. We also examined whether epilepsy is associated with developmental regression. Although severe epilepsy syndromes such as Landau-Kleffner syndrome are known to cause autistic-like symptoms following developmental regression, there is controversy about whether other forms of epilepsy are associated with the more common developmental regression seen in many young children with epilepsy. Indeed, we found a small association between epilepsy and developmental regression. En ligne : http://dx.doi.org/10.1002/aur.2132 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=405

Sex differences in employment and supports for adults with autism spectrum disorder / Julie LOUNDS TAYLOR in Autism, 23-7 (October 2019)  

Public ISBD [article]  inAutism > 23-7 (October 2019) . - p.1711-1719 Titre : Sex differences in employment and supports for adults with autism spectrum disorder Type de document : texte imprimé Auteurs : Julie LOUNDS TAYLOR, Auteur ; Leann S. DAWALT, Auteur ; Alison R. MARVIN, Auteur ; J. Kiely LAW, Auteur ; Paul H. LIPKIN, Auteur Article en page(s) : p.1711-1719 Langues : Anglais (eng) Mots-clés : adults  autism spectrum disorders  benefits  sex differences  vocational/labor force participation Index. décimale : PER Périodiques Résumé : This study explored sex differences in employment, reasons for unemployment, benefits, and supports among a large, international sample of adults with autism spectrum disorder. The sample included 443 adults with autism spectrum disorder (60% female; 74% residing in the United States) who consented to be part of an autism research registry and completed an Internet survey. Outcome variables included current employment status, number of hours working, number of jobs in the past 5 years, reasons for unemployment, as well as the number of benefits received and the amount of financial support currently being received from families of origin. Using multiple regression models, we found that males and females were working at similar rates. Females were more likely than males to say that their unemployment was a result of choosing to withdraw from the labor market. Similar percentages of males and females reported receiving some form of benefits or family support, but of those receiving benefits/family support, males received more than females. These results are consistent with other studies finding subtle, but potentially important sex differences in life-course outcomes of individuals with autism spectrum disorder. En ligne : http://dx.doi.org/10.1177/1362361319827417 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=406 [article] Sex differences in employment and supports for adults with autism spectrum disorder [texte imprimé] / Julie LOUNDS TAYLOR, Auteur ; Leann S. DAWALT, Auteur ; Alison R. MARVIN, Auteur ; J. Kiely LAW, Auteur ; Paul H. LIPKIN, Auteur . - p.1711-1719. Langues : Anglais (eng) in Autism > 23-7 (October 2019) . - p.1711-1719 Mots-clés : adults  autism spectrum disorders  benefits  sex differences  vocational/labor force participation Index. décimale : PER Périodiques Résumé : This study explored sex differences in employment, reasons for unemployment, benefits, and supports among a large, international sample of adults with autism spectrum disorder. The sample included 443 adults with autism spectrum disorder (60% female; 74% residing in the United States) who consented to be part of an autism research registry and completed an Internet survey. Outcome variables included current employment status, number of hours working, number of jobs in the past 5 years, reasons for unemployment, as well as the number of benefits received and the amount of financial support currently being received from families of origin. Using multiple regression models, we found that males and females were working at similar rates. Females were more likely than males to say that their unemployment was a result of choosing to withdraw from the labor market. Similar percentages of males and females reported receiving some form of benefits or family support, but of those receiving benefits/family support, males received more than females. These results are consistent with other studies finding subtle, but potentially important sex differences in life-course outcomes of individuals with autism spectrum disorder. En ligne : http://dx.doi.org/10.1177/1362361319827417 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=406

---

1 (1 - 4 / 4) Par page : 25 50 100 200