Health care transition for autistic adolescents and young adults: A pilot rural and urban comparison survey study.

Autistic adolescents and young adults in rural areas face significant challenges in health care transition compared to their urban counterparts. Health care transition, the process of moving from pediatric to adult health care, is crucial for the long-term health outcomes of adolescents and young adults. Previous research indicates rural adolescents and young adults often have greater unmet medical and financial needs, affecting their transition experiences, but there was no study focusing on rural autistic adolescents and young adults' health care transition experiences.

ECHO autism adult healthcare: Training community clinicians to provide quality care for autistic adults.

Autistic adults experience significant unmet healthcare needs, with opportunities for improvement in both the systems and the practitioners who serve this population. Primary care physicians/practitioners (PCPs) are a natural choice to provide comprehensive care to autistic adults but often lack experience in serving this population. This pilot study developed and tested an Extension for Community Healthcare Outcomes (ECHO) Autism model adapted from our previous work, focused specifically on training PCPs in best-practice care for autistic adults.

Developing and Psychometric Testing a Health Care Transition Service Measure in the National Survey of Children's Health.

Objective: Access to health care transition (HCT) services has been included in national surveys for 20 years. While dozens of studies have assessed HCT, no study has examined the model fit of the HCT questions or psychometric properties of the measure. We utilized National Survey of Children's Health (NSCH) data to develop and test a comprehensive HCT measure.

Stress and Coping in Autistic Young Adults.

Introduction: Half a million autistic youth will enter adulthood over the next decade. Support services to help youth successfully transition into adulthood are limited and not tailored to the autistic youth and young adult's needs. This study utilized qualitative methods to understand how autistic young adults experience and cope with stress during the transition to adulthood.

Measuring health care transition: Across time and into the future.

Problem: Youth with special health care needs often experience significant difficulty transitioning into adult health care services and adult life. Services supporting youths' transition from pediatric to adult health care (Health Care Transition (HCT)) have been a priority for nearly 30 years to improve this transition process. The Health Resources and Service Administration, Maternal and Child Health Bureau have measured HCT service provision since 2001 but the longitudinal use of this measure has never been examined (Blumberg, 2003; Maternal and Child Health Bureau, n.

Assessing and Promoting Independence in Young Adults with Autism Spectrum Disorder.

Objective: Quality of life, independence, and employment outcomes are poor for young adults with autism spectrum disorder (YA-ASD). This study explored the desires and experiences of YA-ASD as they transition into adulthood.

Methods: Fifteen YA-ASD, age 18 to 25 years, were recruited from autism spectrum disorder centers, participant registries, and social media advertising.

Exploratory Study of Fecal Cortisol, Weight, and Behavior as Measures of Stress and Welfare in Shelter Cats During Assimilation Into Families of Children With Autism Spectrum Disorder.

Cats are a common companion animal (CA) in US households, and many live in families of children with autism spectrum disorder (ASD). The prevalence of ASD is one in 54, and many children have behavior challenges as well as their diagnostic communication disorders. Benefits of CAs for children with ASD have been identified, but little is known about the welfare of CAs in these homes.

Exploratory Study of Cat Adoption in Families of Children with Autism: Impact on Children's Social Skills and Anxiety.

Purpose: The diagnosis of Autism Spectrum Disorder (ASD) occurs in one in 54 children and companion animals (CA) are common in families of children with ASD. Despite evidence of CA ownership benefits for children with ASD, little is known about cats. The purpose was to explore the impact of shelter cat adoption by families of children with ASD.

Provider Perspectives on the Extension for Community Healthcare Outcomes Autism: Transition to Adulthood Program.

Objective: Despite their complex health care needs, transition-aged youth diagnosed with autism spectrum disorder (TAY-ASD) receive few transition services and describe difficulty finding adult providers. A 12-week primary care provider (PCP) training was developed to improve the delivery of transition services for TAY-ASD [Extension for Community Healthcare Outcomes (ECHO) Autism: Transition to Adulthood program]. The current study examines the PCPs' perspectives and experiences of the program and application of the training material.

Validation of the Health-Related Independence for Young Adults with Autism Spectrum Disorder Measure- Caregiver Version.

Little is known about Young adults with Autism Spectrum Disorder (YA-ASD) health, healthcare and safety needs. This study describes the validation of a health care transition measure for YA-ASD, the Health-Related Independence (HRI). We collected data from caregivers (n = 490) at five Autism Treatment Network sites and compared the psychometric properties of HRI to the gold standard (STAR) and other validated measures.

Development and Initial Testing of a Health-Related Independence Measure for Autistic Young Adults as Reported by Caregivers.

Background: Becoming an adult comes with education, work, living, and health-related transitions. Health care transition (HCT) services help adolescents prepare for a smooth transition to adult care, ensure health insurance retention, and promote adolescents' independent management of health care and life needs. Lack of HCT services can result in negative outcomes such as unmet needs, overmedication, and loss of decision-making authority.

ECHO Autism Transition: Enhancing healthcare for adolescents and young adults with autism spectrum disorder.

Transition-age youth and young adults with autism spectrum disorder have complex healthcare needs, yet the current healthcare system is not equipped to adequately meet the needs of this growing population. Primary care providers lack training and confidence in caring for youth and young adults with autism spectrum disorder. The current study developed and tested an adaptation of the Extension for Community Healthcare Outcomes model to train and mentor primary care providers ( = 16) in best-practice care for transition-age youth and young adults with autism spectrum disorder.

Self-determination in young adults with autism spectrum disorder.

This study examined rates of and contributing factors to self-determination among young adults with autism spectrum disorder. Caregivers of young adults with autism spectrum disorder, 16-25 years, from five Autism Treatment Network sites completed surveys about their young adults' transition experiences including the American Institutes for Research Self-Determination measure. Data were analyzed using univariate and multivariate analysis.

Sexual and Relationship Interest, Knowledge, and Experiences Among Adolescents and Young Adults with Autism Spectrum Disorder.

Little research exists to describe sexual and romantic relationships among adolescents and young adults with autism spectrum disorder (ASD) from their perspectives. Sexuality and intimacy are developmentally important and influence health and quality of life for all adolescents and young adults, including those with ASD. This study explored and compared the sex and relationship experiences of 27 adolescents and young adults with ASD (males = 20).

A Qualitative Comparison of Caregiver and Youth with Autism Perceptions of Sexuality and Relationship Experiences.

Objectives: Caregivers play a critical role in educating their youth with autism about sex and relationships; yet, we know little about caregivers' ability to deliver this support, youth's perspectives, or the congruence of youth and caregiver experiences. To help fill this gap, we explored and compared the perspectives of caregivers and their youth with autism spectrum disorder about and interactions regarding sex and relationships.

Methods: We conducted qualitative one-on-one interviews with youth (n = 27) and focus groups with their caregivers (n = 29).

Exploration and Comparison of Adolescents With Autism Spectrum Disorder and Their Caregiver's Perspectives on Transitioning to Adult Health Care and Adulthood.

Background: Adolescents with autism spectrum disorder (ASD) experience challenges achieving independence. Few studies assess both adolescents and caregivers' needs as adolescents transition to adult health care.

Objective/methods: This study explored and compared the health-related independence experiences of 27 adolescents with ASD and their caregivers.

Reframing Autism: Young Adults With Autism Share Their Strengths Through Photo-Stories.

Unlabelled: A dearth of research describes the lives of young adults with autism spectrum disorder (ASD) from the perspectives of young adults themselves. We explored young adults' strengths using Photovoice, a method in which participants use images and discussions to express themselves. Images were purposefully chosen to help young people participate in the research process.

Disparities in Quality and Access to Care for Children with Developmental Disabilities and Multiple Health Conditions.

Background: The Maternal Child Health Bureau identified six indicators of quality and accessibility essential in achieving coordinated, family-centered, community-based care for children with special healthcare needs (CSHCN). Previous research examined associations between children with single conditions and individual indicators. We sought to identify disparities in meeting quality and accessibility indicators for children with different condition types.

Snapshots of Growing Up: Youth with Autism Explore Adulthood Through Photovoice.

Objective: Youth with autism spectrum disorder (ASD) experience significant challenges transitioning to adulthood. We utilized Photovoice to better understand youth's desires for and perspectives on becoming adults.

Method: Youth with ASD (N = 11) photographed their life experiences, attended group and individual photo-sharing and discussion sessions, and exhibited their work publicly.

'Transitions are Scary for our Kids, and They're Scary for us': Family Member and Youth Perspectives on the Challenges of Transitioning to Adulthood with Autism.

Background: Adolescents with autism spectrum disorder (ASD) face many challenges as they age into adulthood. Because little is known about the perspectives of caregivers and youth during this critical transition, this study explored their social, educational, and vocational needs and experiences.

Method: Two focus groups were conducted with youth with ASD (n = 13) and two focus groups were conducted with their caregivers (n = 19), where theme analysis strategies derived from Grounded Theory were utilized to identify themes.

"You think it's hard now … It gets much harder for our children": Youth with autism and their caregiver's perspectives of health care transition services.

Adolescents with Autism Spectrum Disorder diagnosis often have complex comorbid physical and mental health conditions. These youth rely heavily on their medical providers and struggle through the often rocky transition out of pediatric care into adulthood and adult-centered care. This study is among the first to qualitatively examine the health care transition experiences of youth with Autism Spectrum Disorder and their caregivers.

The impact of the medical home on access to care for children with autism spectrum disorders.

Children with autism spectrum disorders (ASD) experience difficulty accessing health care services. Using parent-reported data from the 2009-2010 National Survey of Children with Special Health Care Needs, we examined whether having a medical home reduces unmet need for specialty care services for children with ASD (n = 3,055). Descriptive statistics and Chi square tests identified sample characteristics and examined the relationship between unmet needs and a standardized measure of medical home.

Health care transition services for youth with autism spectrum disorders.

Objective: Little is known about accessibility to health care transition (HCT) services (HCT) for youth with autism spectrum disorders (ASD). This study examined how often youth with ASD receive HCT services and how access varied by individual, family, and health system characteristics.

Method: Questionnaires were completed by 101 parents of youth with ASD (ages 12-17 years) enrolled in a national online autism registry.

The relationship between the medical home and unmet needs for children with autism spectrum disorders.

The purpose of this study was to examine the relationship between having access to a medical home and unmet needs for specialty care services for children with autism spectrum disorders (ASD). Parents of children enrolled in a national autism registry were invited to complete an online Access to Care Questionnaire. The resulting sample consisted of 371 parents-child dyads.