428 results on '"Taylor, Julie Lounds"'
Search Results
2. Associations between Social Experiences and Psychological Health for Autistic Youth with Low IQ
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Taylor, Julie Lounds, Sullivan, Virginia, Bishop, Somer L., Zheng, Shuting, and Adams, Ryan E.
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- 2024
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3. Perspectives on Employer-Initiated Terminations Among Young Adults on the Autism Spectrum
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Pezzimenti, Florencia, Durrani, Eman, Zheng, Shuting, Adams, Ryan E., Bishop, Somer L., and Taylor, Julie Lounds
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- 2024
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4. Perspectives on Employer-Initiated Terminations Among Young Adults on the Autism Spectrum
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Pezzimenti, Florencia, Durrani, Eman, Zheng, Shuting, Adams, Ryan E, Bishop, Somer L, and Taylor, Julie Lounds
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Pediatric ,Autism ,Intellectual and Developmental Disabilities (IDD) ,Clinical Research ,Behavioral and Social Science ,Mental Health ,Brain Disorders ,Mental health ,Good Health and Well Being ,Employer-initiated termination ,Employment ,Fired ,Job ,Work ,Education ,Psychology and Cognitive Sciences ,Developmental & Child Psychology - Abstract
Job instability is high among autistic adults, with employer-initiated terminations a common reason for job loss. The current study used qualitative methods to code reasons that autistic adults identified for their employer-initiated termination. From 315 autistic individuals ages 18-35 who completed an online survey, 93 (29.5%) reported having been terminated from a job. These individuals were asked about the reasons for their termination and responses were coded into thematic categories. Common reasons included work performance, social difficulties, attendance, and mental health challenges. Adults were more likely to attribute terminations to internal causes (related to the individual) than to external causes (environment-related). A good fit between workplace, individual preferences, skills, and abilities is likely key to promoting job continuity for autistic adults.
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- 2023
5. Patterns of sleep disturbances and associations with depressive symptoms in autistic young adults
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Lampinen, Linnea A, Zheng, Shuting, Taylor, Julie Lounds, Adams, Ryan E, Pezzimenti, Florencia, Asarnow, Lauren D, and Bishop, Somer L
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Clinical and Health Psychology ,Psychology ,Autism ,Mental Health ,Sleep Research ,Depression ,Behavioral and Social Science ,Clinical Research ,Pediatric ,Intellectual and Developmental Disabilities (IDD) ,Brain Disorders ,Aetiology ,2.3 Psychological ,social and economic factors ,Mental health ,Good Health and Well Being ,Humans ,Young Adult ,Child ,Adolescent ,Adult ,Autistic Disorder ,Autism Spectrum Disorder ,Sleep Wake Disorders ,Sleep ,delayed phase ,depression ,sleep ,sleep efficiency ,young adults ,Clinical Sciences ,Neurosciences ,Developmental & Child Psychology ,Applied and developmental psychology ,Clinical and health psychology - Abstract
Autistic individuals are at an increased risk for both sleep disturbances and depression. While studies in the general population and in autistic adults have drawn general links between sleep disturbances and mental health, few studies have examined the extent to which specific sleep problems may be implicated in the extremely high rates of depression among autistic adults. This study aimed to describe the patterns of sleep disturbances in autistic young adults, and their associations with depressive symptoms while controlling for relevant demographic factors. A sample of 304 legally independent adults (age 18-35 years old) with a childhood diagnosis of autism spectrum disorder self-reported on their average sleep behaviors during the past week and depressive symptoms on the Beck Depressive Inventory-II. A significant proportion (86.01%) of autistic young adults experienced at least one of the primary sleep disturbances of interest, including short total sleep time (39.59%), poor sleep efficiency (60.07%), and delayed sleep phase (36.18%). Additionally, lower sleep efficiency and delayed sleep phase were both associated with higher depressive symptoms. The associations between sleep and depressive symptoms identified in our study suggest that sleep treatments may hold potential for ameliorating depressive symptoms in autistic adults who also experience sleep problems. Further research using daily sleep diaries and objective measures of sleep behaviors, as well as longitudinal studies, are needed to understand how changes in sleep may relate to changes in depressive symptoms in autistic adults.
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- 2022
6. A Longitudinal RCT of P-ESDM with and without Parental Mindfulness Based Stress Reduction: Impact on Child Outcomes
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Weitlauf, Amy S., Broderick, Neill, Alacia Stainbrook, J., Slaughter, James C., Taylor, Julie Lounds, Herrington, Catherine G., Nicholson, Amy G., Santulli, Madeline, Dorris, Kristin, Garrett, LaTamara Jackson, Hopton, Michelle, Kinsman, Amy, Morton, Mary, Vogel, Ashley, Dykens, Elisabeth M., Pablo Juárez, A., and Warren, Zachary E.
- Abstract
This randomized controlled trial (NCT03889821) examined Mindfulness Based Stress Reduction (MBSR) in conjunction with the Parent-implemented Early Start Denver Model (P-ESDM). A previous report described improved metrics of parental distress (Weitlauf et al. in Pediatrics 145(Supplement 1):S81-S92, 2020). This manuscript examines child outcomes. 63 children with ASD (< 36 months) and their parents received 12 P-ESDM sessions. Half of parents also received MBSR. Longitudinal examination of whole sample means revealed modest improvements in autism severity, cognitive, and adaptive skills. There was not a significant time × group interaction for children whose parents received MBSR. Future work should examine more proximal markers of child or dyadic change to enhance understanding of the impact of providing direct treatment for parents as part of early intervention initiatives.
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- 2022
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7. Parental Perceptions of Service Access for Transition-Aged Youth with Autism during COVID-19
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Burke, Meghan M., Cheung, W. Catherine, Li, Chak, DaWalt, Leann, Segal, Jordan, and Taylor, Julie Lounds
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Services are critical for youth with autism spectrum disorder (ASD), especially during the transition to adulthood. Under the best of circumstances, though, it can be difficult to access needed adult services. With COVID-19, services were more difficult to obtain and retain. In this study, we explored parent perceptions of accessing new services and maintaining current services during the first year of the COVID-19 pandemic. Structured interviews were conducted with 65 parents of transition-aged youth (aged 16-26) with ASD living in three states (IL, TN, and WI) in the United States. None of the participants reported receiving new services during the pandemic, and many struggled to access services via online applications. In addition, participants reported that service suspensions and changes in modality (e.g., from in-person to telehealth) were spearheaded by professionals and not families. Participants, especially those in TN, were more likely to pay out-of-pocket for services during the COVID-19 pandemic to compensate for service disruptions. Implications for research and practice are discussed.
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- 2022
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8. Autism through midlife: trajectories of symptoms, behavioral functioning, and health
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Hong, Jinkuk, DaWalt, Leann Smith, Taylor, Julie Lounds, Haider, Aasma, and Mailick, Marsha
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- 2023
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9. Job loss predicts worsening depressive symptoms for young adults with autism: A COVID‐19 natural experiment
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Taylor, Julie Lounds, Adams, Ryan E, Pezzimenti, Florencia, Zheng, Shuting, and Bishop, Somer L
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Clinical and Health Psychology ,Psychology ,Mental Health ,Intellectual and Developmental Disabilities (IDD) ,Brain Disorders ,Depression ,Behavioral and Social Science ,Autism ,Pediatric ,Clinical Research ,Aetiology ,2.3 Psychological ,social and economic factors ,Mental health ,Good Health and Well Being ,Decent Work and Economic Growth ,Autism Spectrum Disorder ,Autistic Disorder ,COVID-19 ,Humans ,SARS-CoV-2 ,United States ,Young Adult ,adults ,autism spectrum disorder ,depression ,employment ,Clinical Sciences ,Neurosciences ,Developmental & Child Psychology ,Applied and developmental psychology ,Clinical and health psychology - Abstract
Adults with autism spectrum disorder (ASD) experience high rates of both unemployment and depression. Though job loss predicts increased risk of depression in the general population, studies have yet to directly examine this relationship among individuals with ASD. With the backdrop of rising unemployment due to COVID-19, we used a longitudinal design to examine whether employment changes predicted increasing depressive symptoms among young adults with ASD. Online surveys were collected from young adults with ASD at two times: just before widespread social distancing measures were adopted in the United States, and again 10 weeks later. Both time points included measurement of depressive symptoms (Beck Depression Inventory-2). At Time 2, COVID-related employment changes and the perceived impact of those changes on well-being were collected. Of the young adults who were employed at Time 1 (n = 144), over one-third (37.5%) reported employment changes during the first 2 months of COVID-19. Most of this change was job loss or reductions in hours or pay ("job loss/reduction"). Controlling for Time 1 depressive symptoms, young adults who experienced job loss/reduction had significantly higher depressive symptoms at Time 2 than those without an employment change. Individuals' perceived impact of employment change also predicted depressive symptoms. These findings suggest that losing a job or experiencing reductions in hours or pay leads to worsening depressive symptoms among adults with ASD. Better supporting autistic adults in the workplace may not only decrease the likelihood of job loss, but also combat the exceedingly high rates of depression in this group. LAY SUMMARY: Though unemployment has been linked to mental health problems in the general population, this relationship is seldom considered among adults with autism. In this study, we found that adults on the autism spectrum who lost their jobs or experienced reductions in pay or hours during the first 2 months of COVID-19 had worsening depression compared to adults who did not have job changes. Our findings suggest that increasing access to employment may help alleviate poor mental health among autistic adults.
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- 2022
10. Development, Feasibility, and Acceptability of a Nationally Relevant Parent Training to Improve Service Access during the Transition to Adulthood for Youth with ASD
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Taylor, Julie Lounds, Pezzimenti, Florencia, Burke, Meghan M., DaWalt, Leann Smith, Lee, Chung eun, and Rabideau, Carol
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Many youth with autism spectrum disorder (ASD) face challenges accessing needed services as they transition to adulthood. The present study describes the development, feasibility and acceptability of a new intervention designed to teach parents of transition-aged youth with ASD about the adult service system and the most effective ways to access services and supports. As part of a randomized-controlled trial, the intervention--named ASSIST--was delivered to 91 participants in three states in the U.S. Results suggested that ASSIST is feasible and acceptable to participants. Though intended to be an in-person group-based program, due to COVID-19 restrictions ASSIST was primarily delivered online. Results and discussion explore the trade-offs and implications of these different treatment delivery modalities in relation to ASSIST.
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- 2022
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11. The Role of Parental Advocacy in Addressing Service Disparities for Transition-Aged Youth on the Autism Spectrum
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Lee, Chung eun, Burke, Meghan M., DaWalt, Leann Smith, Li, Chak, and Taylor, Julie Lounds
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Youth with autism spectrum disorder (ASD) face challenges accessing needed services as they transition to adulthood. Correlates of service access identified in the literature--such as family resources, race/ethnicity, or youth functioning--can be difficult to change and may not be feasible targets for intervention. This study focused on a potential contributor to service access that is malleable: parental advocacy. Specifically, we examined the association between parental advocacy activities and number of services among transition-aged youth with ASD, after accounting for indicators of youth functioning and family demographic variables (high school exit, co-occurring intellectual disability, social impairments, adaptive behaviors, race/ethnicity, state of residence, family income, and parental depression). Participants included 185 families of youth with ASD who are part of an ongoing randomized controlled trial. Data were collected at baseline (prior to intervention) via parental questionnaire and structured interview. Using hierarchical regression analyses, we found that parental advocacy activities were significantly and strongly associated with service receipt after controlling for youth functioning and family demographic factors. Youth whose parents are less involved in advocacy activities might be at-risk for service disparities. To close the gaps for service disparities, future interventions may target parental advocacy skills.
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- 2022
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12. Concurrent Associations between Expressive Language Ability and Independence in Adolescents and Adults with Fragile X Syndrome.
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Abbeduto, Leonard, Klusek, Jessica, Taylor, Julie Lounds, Abdelnur, Nadia, Sparapani, Nicole, and Thurman, Angela John
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daily living skills ,expressive language ,fragile X syndrome ,independent functioning ,Intellectual and Developmental Disabilities (IDD) ,Clinical Research ,Brain Disorders ,Pediatric ,Mental Health ,Fragile X Syndrome ,Rare Diseases ,Behavioral and Social Science ,Neurosciences ,Psychology ,Cognitive Sciences - Abstract
BackgroundFew individuals with fragile X syndrome (FXS) successfully meet adult normative expectations in education, employment, peer relations, and habitation, although there is within-syndrome variability in this regard. The primary goal of this study was to determine whether expressive language skills contribute to the capacity for independent functioning in adulthood even after controlling for nonverbal cognitive ability.MethodsParticipants were 18- to 23-year-olds with FXS. Expressive language was assessed using the psychometrically validated Expressive Language Sampling (ELS) conversation and narration procedures. The language produced was transcribed and analyzed to yield measures of expressive vocabulary, syntax, and intelligibility. Parents concurrently completed questionnaires on the independent functioning of the participants with FXS.ResultsAll three ELS measures were significantly corelated with multiple measures of independence. The magnitudes of the correlations were reduced when nonverbal IQ was controlled through partial correlation. Nonetheless, many of the partial correlations were medium to large and several were statistically significant.ConclusionsExpressive language skills appear to contribute uniquely to the capacity for independence, although longitudinal data are needed to evaluate the possibility of a bidirectional relationship between these domains. Thus, language intervention may be a prerequisite for preparing youth with FXS for an independent adult life.
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- 2021
13. A Review of the Benefits and Barriers to Postsecondary Education for Students with Intellectual and Developmental Disabilities
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Lee, Chung Eun and Taylor, Julie Lounds
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Postsecondary educational programs (PSEs) are increasingly an option for students with intellectual and developmental disabilities (IDD). This scoping review synthesized research to understand the impacts of these programs for students with IDD and for campus, and barriers to these programs across stages of engagement (exploration, participation, completion). Studies were identified by searching PubMed, PsycINFO, ERIC, and Web of Science databases and reference lists of included articles. Twenty-one studies met inclusion criteria. Multiple benefits were identified for students with IDD and campus. Persistent barriers across all stages of program engagement included lack of funding and lack of collaboration. Barriers specific to stages included lack of knowledge, options, individualized support, integration into campus, and transportation. Implications for research and practice are discussed.
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- 2022
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14. Goal Attainment Scaling--Community-Based: A Method to Incorporate Personalized Outcomes into Intervention Research with Youth and Adults on the Autism Spectrum
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Lee, Chung Eun, Shogren, Karrie A., Segal, Jordan, Pezzimenti, Florencia, Aleman-Tovar, Janeth, and Taylor, Julie Lounds
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Given the wide heterogeneity in the autism population, one challenge for intervention studies is to identify outcome measures that have similar meaning across individuals. This is particularly pronounced in intervention studies of adults with autism spectrum disorder, where outcomes such as employment, independence, or community living are common targets. However, these outcomes can be more challenging to obtain for those who have greater support needs, for example, and therefore may be more or less salient depending on the sample under study. Goal attainment scaling can help address this issue as it allows individuals to identify personally meaningful goals and track progress toward these goals. While goal attainment scaling is gaining popularity in the autism field as an outcome measure, most intervention studies that use goal attainment scaling have been situated in clinical or school settings. Generating reliable and scalable goals outside of these settings can be challenging. In this article, we describe the promise of goal attainment scaling for tailoring individualized outcomes among youth and adults with autism spectrum disorder and discuss the challenges of current goal attainment scaling methods in community-based intervention research. We then describe a new goal attainment scaling approach that is rigorous, practical, and can be used across research settings to measure individualized outcomes.
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- 2022
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15. A Longitudinal RCT of P-ESDM With and Without Parental Mindfulness Based Stress Reduction: Impact on Child Outcomes
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Weitlauf, Amy S., Broderick, Neill, Alacia Stainbrook, J., Slaughter, James C., Taylor, Julie Lounds, Herrington, Catherine G., and Nicholson, Amy G.
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Stress management -- Evaluation ,Parenting -- Methods -- Evaluation ,Autistic children -- Family -- Care and treatment ,Mindfulness meditation -- Evaluation ,Health - Abstract
This randomized controlled trial (NCT03889821) examined Mindfulness Based Stress Reduction (MBSR) in conjunction with the Parent-implemented Early Start Denver Model (P-ESDM). A previous report described improved metrics of parental distress (Weitlauf et al. in Pediatrics 145(Supplement 1):S81-S92, 2020). This manuscript examines child outcomes. 63 children with ASD (< 36 months) and their parents received 12 P-ESDM sessions. Half of parents also received MBSR. Longitudinal examination of whole sample means revealed modest improvements in autism severity, cognitive, and adaptive skills. There was not a significant time x group interaction for children whose parents received MBSR. Future work should examine more proximal markers of child or dyadic change to enhance understanding of the impact of providing direct treatment for parents as part of early intervention initiatives., Author(s): Amy S. Weitlauf [sup.1] , Neill Broderick [sup.1] , J. Alacia Stainbrook [sup.1] , James C. Slaughter [sup.2] , Julie Lounds Taylor [sup.1] , Catherine G. Herrington [sup.1] , [...]
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- 2022
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16. Sex Differences in Social Participation of High School Students with Autism Spectrum Disorder
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DaWalt, Leann Smith, Taylor, Julie Lounds, Bishop, Somer, Hall, Laura J, Steinbrenner, Jessica Dykstra, Kraemer, Bonnie, Hume, Kara A, and Odom, Samuel L
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Biological Psychology ,Social and Personality Psychology ,Psychology ,Clinical Research ,Brain Disorders ,Behavioral and Social Science ,Intellectual and Developmental Disabilities (IDD) ,Mental Health ,Pediatric ,Autism ,2.3 Psychological ,social and economic factors ,Aetiology ,Mental health ,Adolescent ,Autism Spectrum Disorder ,Female ,Humans ,Male ,Schools ,Sex Characteristics ,Sex Factors ,Social Participation ,Students ,adolescence ,autism spectrum disorder ,sex differences ,social interactions ,Clinical Sciences ,Neurosciences ,Developmental & Child Psychology ,Applied and developmental psychology ,Clinical and health psychology - Abstract
There is lack of consensus in the literature regarding sex differences in social outcomes for individuals on the autism spectrum. Furthermore, little research has focused on the social experiences of high school students with autism spectrum disorder (ASD) during the school day. Using a large racially/ethnically diverse sample of high school students with ASD receiving special education services (n = 547; 76 females, 471 males), we examined sex differences in social interactions of youth both during and after school. We also tested for sex differences in background and phenotypic characteristics including autism severity, IQ, adaptive behavior, and mental health. Results indicated few statistically significant differences between males and females in social interactions and phenotypic characteristics (including raw scores of autism symptom severity). However, analysis of standardized scores of autism symptoms suggested that symptom scores for females with ASD diverged more from same-sex peers in the normed sample than scores of males with ASD. Lack of sex difference in social participation for youth with ASD in this study stands in contrast to patterns of sex differences in the general population. Findings suggest that few differences between males and females with ASD, both in social participation and autism symptom severity, might result in females with ASD being more dissimilar to their same-sex peers than males with ASD. Implications of findings for understanding sex differences in ASD across the life course are discussed. LAY SUMMARY: The present study examined sex differences in social participation in a large, diverse sample of high school students with autism spectrum disorder (ASD). Males and females were very similar in their social interactions both at school and outside of school, based on reports by teachers and parents. Level of autism symptoms was also similar for males and females. However, standardized scores of autism symptoms, which take into account age and sex specific norms, suggested that females with ASD may have behaviors that are more divergent from their same-sex peers than males with ASD.
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- 2020
17. Ten Weeks In: COVID-19-Related Distress in Adults with Autism Spectrum Disorder
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Adams, Ryan E., Zheng, Shuting, Taylor, Julie Lounds, and Bishop, Somer L.
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This study examined COVID-19-related distress among adults with autism spectrum disorder and its associations with demographic and mental health information. A sample of 275 adults (ages 18-35) in the United States, all capable of providing self-reports, was recruited from a large national registry. Adults completed online surveys of mental health symptoms just before COVID-19 was declared a pandemic. Two months later, they completed the same surveys of mental health symptoms, and also reported about distress they had experienced as a result of the COVID-19 pandemic. Nearly two-thirds (65.9%) endorsed some form of COVID-related distress with a little over half reporting any individual form of distress. Although depressive and anxiety symptoms did not change from Time 1 to Time 2 on average, higher levels of COVID-related distress was associated with an increase in depressive and anxiety symptoms between Time 1 and Time 2. In addition, women and those who reported higher anxiety symptoms before the pandemic were more likely to report some form of COVID-related distress. The findings suggest that as this global crisis continues to unfold, it will be critical to ensure that adults with autism spectrum disorder who were experiencing mental health challenges prior to the pandemic receive appropriate monitoring.
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- 2021
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18. Depression in Independent Young Adults on the Autism Spectrum: Demographic Characteristics, Service Use, and Barriers
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Zheng, Shuting, Adams, Ryan, Taylor, Julie Lounds, Pezzimenti, Florencia, and Bishop, Somer L.
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Depression is a common problem for adults on the autism spectrum, but little is known about depression-related service receipt in this group. To understand depression diagnostic and treatment status better, we collected information on current depressive symptoms, depression diagnosis, and treatment status of 315 young adults with a childhood diagnosis of autism from the Simons Foundation Powering Autism Research for Knowledge registry. About two-thirds (65.4%) of the adults had been diagnosed with depression, and 46.7% currently met clinical cut-offs for depression on depressive symptoms measures. Among the currently depressed, the majority (83.0%) had a formal depression diagnosis. Despite being no more likely than males to be currently depressed, females (biological sex) were more likely to have received a depression diagnosis. As for depression treatment, 58.5% of currently depressed adults were currently being treated, and 68% had previously received treatment. Medication was the most common form of treatment, followed by individual therapy. Likelihood of receiving depression treatment was higher among those with a formal depression diagnosis and with higher levels of education. Adults reported several barriers to accessing treatment for depression, including financial and insurance issues, accessibility to appropriate care, and professionals' lack of understanding about depression in autism.
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- 2021
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19. Enhancing Developmental-Behavioral Pediatric Rotations by Teaching Residents How to Evaluate Autism in Primary Care
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Hine, Jeffrey F., Wagner, Liliana, Goode, Rachel, Rodrigues, Verity, Taylor, Julie Lounds, Weitlauf, Amy, and Warren, Zachary E.
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Most pediatric residency programs do not provide adequate practical experiences for residents in autism-related care, with a specific dearth of training in diagnostic processes. Without this training, residents enter the primary care workforce with uncertainty surrounding implementation of standard-of-care recommendations for children with autism. Our curriculum was designed to improve upon previously passive shadowing experiences within our developmental-behavioral pediatric rotation by integrating hands-on training in within-practice diagnostic identification and care coordination. In addition to multiple web-based learning activities (including a tutorial teaching administration of an interactive assessment tool), residents were required to actively participate in autism evaluations under supervision of an attending provider. Data were collected to assess feasibility of curricular changes as well as increased comfort level across recommended practice behaviors. Regarding feasibility, 95% of residents completed training components and pre-/post-ratings indicated significant increases in comfort in identifying symptoms/risk for autism, providing feedback about diagnostic decision, and effectively connecting families with services. Outcomes suggest feasibility of model and significantly increased resident comfort level across a range of recommended practice behaviors. This project reflects a first step in advancing incorporation of autism training into pediatric residency programs.
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- 2021
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20. Development, Feasibility, and Acceptability of a Nationally Relevant Parent Training to Improve Service Access During the Transition to Adulthood for Youth with ASD
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Taylor, Julie Lounds, Pezzimenti, Florencia, Burke, Meghan M., DaWalt, Leann Smith, Lee, Chung eun, and Rabideau, Carol
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Pervasive developmental disorders -- Development and progression -- Care and treatment ,Parents -- Health aspects -- Training ,Teenagers -- Psychological aspects -- Health aspects ,Youth -- Psychological aspects -- Health aspects ,Transitional care -- Demographic aspects -- Methods -- Educational aspects ,Health - Abstract
Many youth with autism spectrum disorder (ASD) face challenges accessing needed services as they transition to adulthood. The present study describes the development, feasibility and acceptability of a new intervention designed to teach parents of transition-aged youth with ASD about the adult service system and the most effective ways to access services and supports. As part of a randomized-controlled trial, the intervention-named ASSIST-was delivered to 91 participants in three states in the U.S. Results suggested that ASSIST is feasible and acceptable to participants. Though intended to be an in-person group-based program, due to COVID-19 restrictions ASSIST was primarily delivered online. Results and discussion explore the trade-offs and implications of these different treatment delivery modalities in relation to ASSIST., Author(s): Julie Lounds Taylor [sup.1] [sup.2] , Florencia Pezzimenti [sup.1] , Meghan M. Burke [sup.3] , Leann Smith DaWalt [sup.4] , Chung eun Lee [sup.1] , Carol Rabideau [sup.2] Author [...]
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- 2022
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21. Goal Attainment Scaling: A Framework for Research and Practice in the Intellectual and Developmental Disabilities Field
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Shogren, Karrie A., Dean, Evan E., Burke, Kathryn M., Raley, Sheida K., and Taylor, Julie Lounds
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Goal setting and attainment is often a targeted outcome in the intellectual and developmental disabilities field; however, standardizing the measurement of attainment of individualized goals is challenging. The purpose of this article is to introduce a four-domain framework that provides a series of questions to research and evaluation teams in planning for the use of goal attainment scaling (GAS) as an outcome measure at the individual or aggregate level. We intend to stimulate discussion and ongoing work to further systematize how GAS is used in (a) intervention research to establish evidence-based practices and (b) practice to assess the extent to which interventions and supports lead to intended outcomes. The goal is to promote a clear planning process to inform data collection on individualized goal attainment outcomes that are rooted in goals and outcomes valued by people with intellectual and developmental disabilities.
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- 2021
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22. Characteristics of Students with Disabilities Who Do and Do Not Receive Transition Services
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Mello, Maria P., Burke, Meghan M., Taylor, Julie Lounds, Urbano, Richard, and Hodapp, Robert M.
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As transition services foster better post-school outcomes, all students with disabilities should be receiving these services as they traverse their final high school years. Using a national, web-based parent survey, we examined the frequency and correlates of the receipt of transition services for 189 students with disabilities. Parents reported their children's age, functioning level, maladaptive behavior, and number of services received. Only 54% of the child of the participants received transition services. Students with higher (vs. lower) levels of adaptive skills were less likely to receive transition services. Students with more services on average and who were older were more likely to receive transition services. Implications are discussed for increasing the implementation of transition services for all students with disabilities and increasing parent knowledge of transition services and transition planning.
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- 2021
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23. Brief Report: ASD-Related Behavior Problems and Negative Peer Experiences among Adolescents with ASD in General Education Settings
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Adams, Ryan E., Taylor, Julie Lounds, and Bishop, Somer L.
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The goal of the current study was to test associations between various ASD-related behavior problems and negative peer experiences in adolescents with ASD. Data were obtained from the Bullying and School Experiences of Children with ASD Survey completed by parents in the Interactive Autism Network (IAN). The current study focused on data from 279 parents of 7th-11th graders with ASD who spent at least half of the school day in a general education setting. Logistic regression analyses found that frequent meltdowns, poor hygiene, rigid rule-keeping, and self-injury were associated with negative peer experiences. Surprisingly, repetitive behaviors and verbal tics were associated with a lower likelihood of experiencing verbal victimization.
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- 2020
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24. Sibling Support
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Taylor, Julie Lounds, Shivers, Carolyn M., and Volkmar, Fred R., editor
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- 2021
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25. Adulthood, Transition to
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Taylor, Julie Lounds, Seltzer, Marsha Mailick, and Volkmar, Fred R., editor
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- 2021
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26. Peer Victimization
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Adams, Ryan, Bishop, Somer, Taylor, Julie Lounds, and Volkmar, Fred R., editor
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- 2021
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27. Exploring the Involvement of Autistic Youth in Decision Making About Services.
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Burke, Meghan M., Best, Megan, Cheung, W. Catherine, DaWalt, Leann Smith, and Taylor, Julie Lounds
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DECISION making ,SERVICES for people with disabilities ,AUTISM ,YOUTH health - Abstract
Although services are critical for many transition-aged youth, it is unclear the extent to which autistic youth participate in decisions about their services. By exploring the perceptions of autistic youth about their role in services, interventions can be developed to improve their participation. In this study, we interviewed 43 transition-aged youth with autism to explore their involvement in decisions about services. Most youth reported not being involved in decision making about the types and modalities of disability services. When youth were involved in decisions, the services were often related to education. Although youth reported that their parents typically spearheaded decisions about services, youth also reported that their parents often listened to their input. Implications for research, policy, and practice are discussed. [ABSTRACT FROM AUTHOR]
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- 2024
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28. Examining the associations among knowledge, empowerment, and advocacy among parents of transition-aged youth with autism.
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Li, Chak, Cheung, W. Catherine, Burke, Meghan M, Taylor, Julie Lounds, and DaWalt, Leann S
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INTELLECT ,CHILDREN'S rights ,SELF-efficacy ,RESEARCH funding ,AUTISM ,QUESTIONNAIRES ,STRUCTURAL equation modeling ,ASPERGER'S syndrome ,ADOLESCENCE - Abstract
Parents of individuals with autism face many challenges in accessing appropriate services and supports for their offspring. Parents also play vital roles in advocating for their offspring's rights and needs. Furthermore, despite advocacy programs becoming increasingly common, it remains unclear how to best foster advocacy among parents of individuals with autism. To this end, we examined the associations among knowledge, empowerment, and three types of advocacy activities (i.e. individual, peer, and systemic) among 185 parents of transition-aged youth with autism using structural equation modeling. Results show that empowerment has a greater impact on advocacy than knowledge. Significant direct and indirect effects of individual advocacy activities on peer advocacy activities, and peer advocacy activities on systemic advocacy activities were also confirmed. Implications for research and practice are discussed. Parents of individuals with autism face many challenges in finding appropriate services and support for their children, and they also play an important role in advocating for their children's rights and needs. Despite the increasing availability of advocacy programs, it is still uncertain how to best encourage parents to advocate for their children. This study explored the connection between parents' knowledge and sense of empowerment, and how these factors relate to three types of advocacy activities (i.e. individual, peer, and systemic). The findings reveal that feeling empowered has a greater impact on advocacy than simply having knowledge. In addition, the study found that individual advocacy correlates to more peer advocacy, which also correlates to more systemic advocacy. These results can help researchers and professionals to better develop programs to increase parent advocacy and, in turn, help improve the lives of individuals with autism. [ABSTRACT FROM AUTHOR]
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- 2024
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29. Complex employment journeys: Case studies of four families of adults with intellectual disability.
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Lanchak, Emily R., Carter, Erik W., McMillan, Elise D., Guest, Laura, Taylor, Julie Lounds, and Schwartzman, Ben
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RESEARCH funding ,PILOT projects ,FAMILIES ,MENTORING ,DESCRIPTIVE statistics ,INTELLECTUAL disabilities ,FAMILY attitudes ,LONGITUDINAL method ,EMPLOYMENT of people with disabilities ,RESEARCH methodology ,SOCIAL support ,CASE studies ,DATA analysis software ,SUPPORTED employment - Abstract
BACKGROUND: The road to employment can be uncertain for millions of adults with intellectual disability and their families. It is important to understand how they navigate this journey and the challenges they experience. OBJECTIVE: We examined the pathways taken by four families in their pursuit of integrated employment, as well as the complexities they encountered along the way. METHOD: In this longitudinal, multiple case study, we followed families across one year. They (and their mentors) completed questionnaires at the beginning of the project, we checked in with them monthly, and we interviewed them at the conclusion of the project. RESULTS: Five primary findings emerged from their experiences: pursuing employment is a family affair, it is an extended journey, each family's journey is different, mentorship matters, and multifaceted support is needed. CONCLUSION: Families need ongoing support and guidance to navigate their journey toward competitive employment. We offer recommendations for research and practice aimed at supporting families in this important pursuit. [ABSTRACT FROM AUTHOR]
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- 2024
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30. Sex Differences in Employment and Supports for Adults with Autism Spectrum Disorder
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Taylor, Julie Lounds, Smith DaWalt, Leann, Marvin, Alison R., Law, J. Kiely, and Lipkin, Paul
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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.
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- 2019
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31. Trajectories of Competitive Employment of Autistic Adults through Late Midlife
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Hickey, Emily J., primary, DaWalt, Leann Smith, additional, Hong, Jinkuk, additional, Taylor, Julie Lounds, additional, and Mailick, Marsha R., additional
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- 2024
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32. Social participation and its relation to internalizing symptoms among youth with autism spectrum disorder as they transition from high school
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Taylor, Julie Lounds, Adams, Ryan E, and Bishop, Somer L
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Biomedical and Clinical Sciences ,Applied and Developmental Psychology ,Clinical and Health Psychology ,Neurosciences ,Psychology ,Intellectual and Developmental Disabilities (IDD) ,Autism ,Mental Health ,Behavioral and Social Science ,Brain Disorders ,Pediatric ,Aetiology ,2.3 Psychological ,social and economic factors ,Mental health ,Adolescent ,Adult ,Autism Spectrum Disorder ,Child ,Female ,Humans ,Internal-External Control ,Longitudinal Studies ,Male ,Personality Development ,Social Environment ,Social Participation ,Social Support ,Young Adult ,autism spectrum disorder ,transition to adulthood ,social participation ,internalizing ,Clinical Sciences ,Developmental & Child Psychology ,Applied and developmental psychology ,Clinical and health psychology - Abstract
In the present study, we examined how unstructured (e.g., spending time with friends or co-workers) and structured (e.g., attending social events at a place of workshop, sports teams) social participation changed from before to after high school for youth with autism spectrum disorders (ASD), as well as the longitudinal and concurrent relations between social participation and internalizing symptoms. Participants included 36 families of youth with ASD who were all in their last year of high school at the first time point of data collection, and who were out of high school for an average of 9 months at the second time point. Social participation and internalizing symptoms were determined using parental report. There was no average change in the amount of unstructured social participation after high school exit, although substantial individual variability was observed. Participation in structured social activities significantly declined after high school exit. Youth who had more structured social participation while in high school were significantly more likely to have gains in their unstructured social participation after high school exit. Turning to relationships between internalizing and social activities, more internalizing symptoms while youth with ASD were in high school significantly predicted increasing social isolation after high school exit (both in terms of structured and unstructured activities). Results point to the likely need for additional supports during the transition to adulthood for youth with ASD who have internalizing problems. Autism Res 2016. © 2016 International Society for Autism Research, Wiley Periodicals, Inc. Autism Res 2017, 10: 663-672. © 2016 International Society for Autism Research, Wiley Periodicals, Inc.
- Published
- 2017
33. Measuring the Service System Impact of a Novel Telediagnostic Service Program for Young Children with Autism Spectrum Disorder
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Stainbrook, J. Alacia, Weitlauf, Amy S., Juárez, A. Pablo, Taylor, Julie Lounds, Hine, Jeffrey, Broderick, Neill, Nicholson, Amy, and Warren, Zachary
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As prevalence of autism spectrum disorder continues to increase, so too does the need for timely, accessible diagnostic consultation. The present work extends from a previous study which provided preliminary evidence for the feasibility of expert clinicians to utilize telemedicine to triage autism spectrum disorder risk in young children. However, it did not examine whether a telediagnostic model had a demonstrable impact on tertiary care center referrals and usage. We therefore examined whether the introduction of telemedicine-based diagnostic consultation for families served by a rural medical facility affected referrals overall as well as to a metropolitan tertiary care diagnostic center. Results suggest that telemedicine diagnostic consultation in partnership with a referring early intervention system may positively impact referrals for diagnostic evaluation as well as the ability of families to schedule and attend appointments.
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- 2019
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34. Factors Impacting Employment for People with Autism Spectrum Disorder: A Scoping Review
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Scott, Melissa, Milbourn, Ben, Falkmer, Marita, Black, Melissa, Bolte, Sven, Halladay, Alycia, Lerner, Matthew, Taylor, Julie Lounds, and Girdler, Sonya
- Abstract
The aim of this study is to holistically synthesise the extent and range of literature relating to the employment of individuals with autism spectrum disorder. Database searches of Medline, CINAHL, PsychINFO, Scopus, ERIC, Web of Science and EMBASE were conducted. Studies describing adults with autism spectrum disorder employed in competitive, supported or sheltered employment were included. Content analysis was used to identify the strengths and abilities in the workplace of employees with autism spectrum disorder. Finally, meaningful concepts relating to employment interventions were extracted and linked to the International Classification of Functioning, Disability and Health Core Sets for autism spectrum disorder. The search identified 134 studies for inclusion with methodological quality ranging from limited to strong. Of these studies, only 36 evaluated employment interventions that were coded and linked to the International Classification of Functioning, Disability and Health, primarily focusing on modifying autism spectrum disorder characteristics for improved job performance, with little consideration of the impact of contextual factors on work participation. The International Classification of Functioning, Disability and Health Core Sets for autism spectrum disorder are a useful tool in holistically examining the employment literature for individuals with autism spectrum disorder. This review highlighted the key role that environmental factors play as barriers and facilitators in the employment of people with autism spectrum disorder and the critical need for interventions which target contextual factors if employment outcomes are to be improved.
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- 2019
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35. Pulling Back the Curtain: Issues in Conducting an Intervention Study with Transition-Aged Youth with Autism Spectrum Disorder and Their Families
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Burke, Meghan M., Waitz-Kudla, Sydney N., Rabideau, Carol, Taylor, Julie Lounds, and Hodapp, Robert M.
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The transition from high school to adulthood is difficult for youth with autism spectrum disorder and their families. Recognizing these challenges, there is a small but emerging body of literature testing interventions to improve the transition process. But there are many challenges in performing intervention research that have yet to be fully addressed. We discuss issues that should be considered when conducting interventions with individuals with autism spectrum disorder to improve the transition to adulthood, drawing from our study of a parent training to facilitate access to adult services during the transition years. Issues covered include (1) timing (when is an intervention most effective?), (2) mode of delivery (what is the best way to present information?), (3) outcomes (how can intervention outcomes be accurately measured?), (4) target population (who is the intervention designed to help?), and (5) level of intervention (who should the intervention target?). Our answers, though preliminary, show the need to be flexible, to adopt a trial-and-error stance, and to listen to the needs--both explicit and implicit--of youth with autism spectrum disorder and their parents as they navigate the difficult transition from adolescence to adulthood.
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- 2019
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36. Brief Report: ASD-Related Behavior Problems and Negative Peer Experiences Among Adolescents with ASD in General Education Settings
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Adams, Ryan E., Taylor, Julie Lounds, and Bishop, Somer L.
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Pervasive developmental disorders -- Social aspects -- Complications and side effects ,Psychological research ,School environment -- Social aspects -- Psychological aspects ,Health - Abstract
The goal of the current study was to test associations between various ASD-related behavior problems and negative peer experiences in adolescents with ASD. Data were obtained from the Bullying and School Experiences of Children with ASD Survey completed by parents in the Interactive Autism Network (IAN). The current study focused on data from 279 parents of 7th-11th graders with ASD who spent at least half of the school day in a general education setting. Logistic regression analyses found that frequent meltdowns, poor hygiene, rigid rule-keeping, and self-injury were associated with negative peer experiences. Surprisingly, repetitive behaviors and verbal tics were associated with a lower likelihood of experiencing verbal victimization., Author(s): Ryan E. Adams [sup.1] , Julie Lounds Taylor [sup.2] , Somer L. Bishop [sup.3] Author Affiliations: (1) grid.239573.9, 0000 0000 9025 8099, Division of Developmental and Behavioral Pediatrics, Cincinnati [...]
- Published
- 2020
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37. The transition to adulthood for individuals with intellectual and developmental disabilities.
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DaWalt, Leann Smith, primary, Taylor, Julie Lounds, additional, and Mailick, Marsha R., additional
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- 2021
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38. Brief Report: Postsecondary Work and Educational Disruptions for Youth on the Autism Spectrum
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Taylor, Julie Lounds and DaWalt, Leann Smith
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This study examined vocational/educational disruption in the 2-3 years after high school for 36 youth with autism spectrum disorder (ASD). Data were collected three times from parents: during youth's last year of high school and two times after high school exit. Data were coded into categories indicating any versus no disruptions in postsecondary vocation/education, and group differences in individual (behavior problems, IQ, adaptive behavior, autism severity, stress reactivity) and family (parent depression, anxiety, quality of life; family income and climate) factors were examined. One-half of youth had experienced a postsecondary vocational/educational disruption; parents of those with a disruption had more depressive and anxiety symptoms and lower quality of life while their son/daughter was still in high school.
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- 2017
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39. Mindfulness-Based Stress Reduction for Parents Implementing Early Intervention for Autism: An RCT
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Weitlauf, Amy S., primary, Broderick, Neill, additional, Stainbrook, J. Alacia, additional, Taylor, Julie Lounds, additional, Herrington, Catherine G., additional, Nicholson, Amy G., additional, Santulli, Madeline, additional, Dykens, Elisabeth M., additional, Juárez, A. Pablo, additional, and Warren, Zachary E., additional
- Published
- 2020
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40. Associations between social activities and depressive symptoms in adolescents and young adults with autism spectrum disorder: Testing the indirect effects of loneliness.
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Adams, Ryan E, Lampinen, Linnea, Zheng, Shuting, Sullivan, Virgina, Taylor, Julie Lounds, and Bishop, Somer L
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SOCIAL participation ,STATISTICS ,ANALYSIS of variance ,CONFIDENCE intervals ,SOCIAL perception ,AUTISM in adolescence ,MENTAL depression ,LONELINESS ,AUTISM ,REPEATED measures design ,DESCRIPTIVE statistics ,RESEARCH funding ,SOCIAL skills ,DATA analysis - Abstract
To better understand the associations between social activities and depressive symptoms in adolescents and young adults with autism spectrum disorder, this study utilized interpersonal theories of depression by accounting for both frequency of various social activities and perceptions of how well their time spent in these activities meet their needs and testing the indirect effects of loneliness in this association. To test these ideas, 321 participants who were recruited from the Simons Foundation Powering Autism Research for Knowledge (SPARK) research match registry and completed online measures of social activities, depressive symptoms, and loneliness. While the specific pattern was different for individual activities, it was found that those who felt that their current frequency of activities did not meet their needs had higher rates of depressive symptoms than those who felt they did meet their needs and that loneliness help to understand the indirect effects of the association between social activities and depressive symptoms. Overall, the findings suggest that how individuals feel about the time they are spending in social activities, such as with friends and in general social activities, could impact outcomes such as depression and loneliness. Previous studies have found that social activities and depressive symptoms in adolescents and young adults with autism spectrum disorder are related. To better understand the relationship between these issues, this study examined the frequency of various types of social activities as well as if the participants felt that the frequency of time spent in the activity met their personal needs. In addition, the role of loneliness was tested as a possible way to understand the relationship between activities and depressive symptoms. To test these ideas, 321 participants who were recruited from the Simons Foundation Powering Autism Research for Knowledge (SPARK) research match registry and completed online measures of social activities, depressive symptoms, and loneliness. While the specific pattern was different for individual activities, it was found that those who felt that their current frequency of activities did not meet their needs had higher rates of depressive symptoms than those who felt they did meet their needs. Also, loneliness helps to understand relationship between social activities and depressive symptoms. The findings were discussed in light of previous study findings, interpersonal theories of depression, and clinical implications. [ABSTRACT FROM AUTHOR]
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- 2024
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41. Improving parents' ability to advocate for services for youth with autism: A randomized clinical trial
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Taylor, Julie Lounds, primary, DaWalt, Leann Smith, additional, Burke, Meghan M., additional, Slaughter, James C., additional, and Xu, Meng, additional
- Published
- 2023
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42. Peer Victimization
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Adams, Ryan, primary, Bishop, Somer, additional, and Taylor, Julie Lounds, additional
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- 2020
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43. Training Parents of Youth with Autism Spectrum Disorder to Advocate for Adult Disability Services: Results from a Pilot Randomized Controlled Trial
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Taylor, Julie Lounds, Hodapp, Robert M., Burke, Meghan M., Waitz-Kudla, Sydney N., and Rabideau, Carol
- Abstract
This study presents findings from a pilot randomized controlled trial, testing a 12-week intervention to train parents of youth with autism spectrum disorder (ASD) to advocate for adult disability services--the Volunteer Advocacy Program-Transition (VAP-T). Participants included 41 parents of youth with ASD within 2 years of high school exit, randomly assigned to a treatment (N = 20) or wait-list control (N = 21) group. Outcomes, collected before and after the intervention, included parental knowledge about adult services, advocacy skills-comfort, and empowerment. The VAP-T had acceptable feasibility, treatment fidelity, and acceptability. After participating in the VAP-T, intervention parents (compared to controls) knew more about the adult service system, were more skilled/comfortable advocating, and felt more empowered.
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- 2017
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44. Emerging adulthood in autism: Striving for independence or interdependence?
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Moser, Carly, Smith DaWalt, Leann, Burke, Meghan M, and Taylor, Julie Lounds
- Subjects
AUTISM ,PARENT-child relationships ,INTERPERSONAL relations ,TRANSITION to adulthood ,LABOR supply ,ADULTS - Abstract
The authors emphasize the need to widen focus from promoting independence to promoting independence and interdependence to support autistic youth. They discuss the introduction of the concept of emerging adulthood by Jeffrey Arnett to describe the period of time when youth transition from adolescence to young adulthood, the Western theories of developmental stages prior to the concept of emerging adulthood, and importance of interdependence for emerging adults in the general population.
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- 2024
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45. Associations between social activities and depressive symptoms in adolescents and young adults with autism spectrum disorder: Testing the indirect effects of loneliness
- Author
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Adams, Ryan E, primary, Lampinen, Linnea, additional, Zheng, Shuting, additional, Sullivan, Virgina, additional, Taylor, Julie Lounds, additional, and Bishop, Somer L, additional
- Published
- 2023
- Full Text
- View/download PDF
46. Family Perspectives on the Complexities of Pursuing Integrated Employment for Adults With Intellectual and Developmental Disabilities
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Carter, Erik W., primary, Lanchak, Emily R., additional, Guest, Laura, additional, McMillan, Elise D., additional, Taylor, Julie Lounds, additional, Fleming, Laurie P., additional, and Dao, Ahn, additional
- Published
- 2023
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47. To better meet the needs of autistic people, we need to rethink how we measure services
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Burke, Meghan M, primary and Taylor, Julie Lounds, additional
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- 2023
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48. Autism spectrum disorder
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Lord, Catherine, Brugha, Traolach S, Charman, Tony, Cusack, James, Dumas, Guillaume, Frazier, Thomas, Jones, Emily JH, Jones, Rebecca M, Pickles, Andrew, State, Matthew W, Taylor, Julie Lounds, and Veenstra-VanderWeele, Jeremy
- Subjects
Clinical Sciences ,Clinical sciences - Published
- 2020
49. Let's Talk about It: Peer Victimization Experiences as Reported by Adolescents with Autism Spectrum Disorder
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Fisher, Marisa H. and Taylor, Julie Lounds
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Individuals with autism spectrum disorder experience high rates of peer victimization; yet, their personal experiences and perceptions of such victimization are not well understood. In this qualitative investigation, responses to questions about bullying and teasing were examined to gain insight into the perception of peer victimization as reported by adolescents with autism spectrum disorder. While the majority of participants provided examples of peer victimization, their situations differed from items typically assessed on bullying questionnaires. Participants were also able to provide explanations for why they believe they are targets and descriptions of their reactions to bullying. Findings from the interviews are used to provide suggestions for the development of more informative bullying assessments and prevention programs for students with autism spectrum disorder.
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- 2016
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50. Postsecondary Expectations of High-School Students with Autism Spectrum Disorders
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Anderson, Kristy A., McDonald, T. A., Edsall, Deirdre, Smith, Leann E., and Taylor, Julie Lounds
- Abstract
This study examined the perceptions of adulthood among 31 high-school students with autism spectrum disorder (ASD). We had two research aims: (a) to report students' postsecondary expectations in terms of school, work, friendships, and living arrangement and (b) to describe how our sample defined adulthood. To better compare our sample's criteria of adulthood with the criteria traditionally endorsed in secondary schools, we used a directed content analysis approach. Data were derived from a semi-structured interview that questioned students about friendships, activities, and the transition to adulthood. The majority of students expected to attain traditional markers of adulthood after high school. For some the pathways to achieving these outcomes were narrowly defined and perceived as a linear process. Independence, maturity, and personal responsibility were the most highly endorsed characteristics of adulthood, followed by chronological age and traditional markers. Implications for transition planning and adult services are discussed.
- Published
- 2016
- Full Text
- View/download PDF
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