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. METHODS: We utilized NSCH data (2016-19) to examine the model fit of 9 HCT questions. The new measure's psychometric properties were assessed by comparing it to theoretically similar and divergent variables including receiving care coordination/help, shared-decision making, satisfaction with communication, preventative dental care, and volunteer experience. RESULTS: An exploratory factor analysis and item culling yielded 8 items addressing 3 subscales. A confirmatory factor analysis on separate data confirmed the identified subscales. A dichotomous and continuous scale was created with subscales including Guidance Toward Independence, Adequate Clinic Visit, and Continuity of Care Discussions. Model fit was excellent with an Eigenvalue of 1.08% and 89% variance explained in exploratory factor analysis and a Goodness of Fit index of 0.97 in confirmatory factor analysis. Examination of initial reliability and content and criterion validity indicated high reliability and validity for the scale and subscales. CONCLUSIONS: This was the first study to examine the psychometric properties of the HCT measure in the NSCH. The HCT measure identified in this study assesses providers' use of care plans, promotion of independence, clinic visit quality, and transfer assistance. This measure will be a useful tool in clinics, intervention development, and research for adolescents with and without special health care needs.retain-->.

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. The project was informed directly by the perspectives and preferences of autistic adults, caregivers, and PCPs. Two consecutive cohorts of PCPs participated in ECHO Autism Adult Healthcare sessions. Each cohort met 1 h twice a month for 6 months, with 37 PCPs (n = 20 in Cohort 1, and n = 17 in Cohort 2) participating. Based on findings from the first cohort, adjustments were made to refine the session preparation, curriculum, conduct of the ECHO, resources, and evaluation. After participation in the ECHO Autism program, PCP self-efficacy and satisfaction improved, while the number of perceived barriers did not change. Knowledge did not improve significantly in Cohort 1, but after adjustments to the training model, participants in Cohort 2 showed significant knowledge gains. While attention to systems of care is critical to addressing barriers in healthcare in the autistic population, the ECHO Autism Adult Healthcare model is feasible and holds promise for improving PCP satisfaction and self-efficacy in working with autistic adults.

Health Care Needs, Experiences, and Perspectives of Autistic Adults.

Background: Autistic adults have high rates of co-occurring health conditions, suicide, and premature mortality, yet often experience health care barriers and poor health outcomes. A better understanding of the health care needs and experiences of autistic adults is essential for improving the health care system and patient experience. Methods: This study examined the perspectives of autistic adults regarding their health care experiences in primary care and other settings and their suggestions for improvement using both qualitative and quantitative methods. Twenty autistic adults (aged 18-35 years, 65% male) completed surveys and individual semi-structured interviews. Results: Qualitative data analysis results revealed 10 subthemes across 3 overarching themes: (1) system- and clinic-level factors affect access to care, (2) aspects of the clinic environment affect health care experiences, and (3) provider knowledge and practices affect health care experiences. Within the first theme, participants described barriers to obtaining services, including scheduling logistics, costs and inadequate insurance coverage, and transportation barriers. The second theme focused on aspects of the clinic environment that participants found especially relevant to their health care experiences and that required specific accommodations. This included sensory input, anxiety-provoking situations and procedures, and wait time. Within the third theme, participants emphasized aspects of providers' care that affected their health care experiences. Key factors included provider knowledge about autism, communication, rapport, and individualized care and patient-provider partnerships. Conclusion: Overall, the findings point to a need for provider training and improvements to the health care delivery system to better meet the unique needs of autistic adults.

Why is this an important issue?: Receiving good health care is important for health and well-being. Understanding autistic adults' perspectives on their health care experiences will help identify ways that health care services can be improved to better meet their needs and preferences in the future. What was the purpose of this study?: The purpose of this study was to learn from autistic adults about their health care needs, experiences, and suggestions for improvement. What did the researchers do?: The researchers asked autistic adults in the United States to complete a survey and participate in an interview over Zoom. The survey and interview questions asked about their experiences receiving health care services and suggestions for how to improve health care services for autistic adults. What were the results of the study?: Twenty autistic adults between the ages of 18 and 35 years participated in this study. Most participants were men (65%) and most were White (75%). The participants shared many important insights about their primary health care experiences and experiences in other health care settings. The results fell into main "themes" or ideas that people had in common. These themes are not listed in any particular order. Autistic adults described many factors that make it hard to access to care, such as getting an appointment, finding transportation, or paying for health care. They explained that the clinic environment needs to be better suited to their needs, such as having a quiet place to wait or sensory accommodations. Participants wanted their doctors to know more about autism and to be able to connect and communicate with them. They also wanted their doctors to partner with them to make sure their health care treatment plan is acceptable and understandable. What do these findings add to what was already known?: These findings show that autistic adults in the United States face many barriers in receiving health care. Some recommendations for improvement may be helpful for all patients, such as being able to book appointments online or having a doctor who does not rush you. Other improvements need to be tailored to the unique needs of autistic patients, such sensory accommodations or autism training for doctors and clinic staff. What are potential weaknesses in the study?: Because the study was small and only included adults who were able to share about their experiences during an interview, these results may not apply to all autistic adults. Another limitation is that the study was designed and carried out by non-autistic (allistic) researchers, who have different perspectives from autistic people. We asked participants to help us interpret our findings to help address this limitation. How will these findings help autistic adults in the future?: The insights from this study provide a lot of recommendations about how health care services can be improved to better meet the needs and preferences of autistic adults in the future.

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.d.). ELIGIBILITY CRITERIA: This manuscript highlights the consistent and inconsistent uses of HCT constructs in two prominent national surveys (the National Survey of Children with Special Health Care Needs (NS-CSHCN) and the National Survey of Children's Health (NSCH)) between 2001 and 2019. All studies utilizing an HCT measure within a national survey between the 18 years were included in this examination. RESULTS: Significant changes have been made to the measurement of HCT service provision resulting in inconsistencies over the last 18 years. Measurement criteria and survey questions have changed substantially from the NS-CSHCN and NSCH limiting one's ability to examine trends in HCT since 2001. Since 2016, few changes have been made, allowing for analysis of trends over time. Importantly, the NSCH includes added questions pertaining to HCT that are not included in the composite HCT outcome measure. CONCLUSION: Future work should include a validation study of the HCT outcome in the National Survey of Children's Health and inclusion of additional HCT questions to promote continued and extensive use of a measure that more fully represents the needs of youth and their families.

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. Methods: The study recruited 15 autistic young adults aged 18-25 years. Each participant completed a short demographic survey and individual interview. Interviews were conducted online via Google Docs or in-person based on the participants' preference. Three researchers organized and coded the data using a thematic approach. Results: Based on our analysis, three themes emerged. Within the first theme, young adults in this study described experiencing a great deal of stress and provided examples of how it manifested in physical and emotional ways. In the second theme, youth described that the causes of this stress stemmed from general problems handling new or multiple responsibilities and specific problems in school, work, financial responsibilities, and social relationships. Finally, young adults described using various coping mechanisms including relaxation techniques, use of technology, and friends and family social support. Conclusions: The study findings can help service providers and family members find new ways to help autistic young adults manage their stress. This study provides a unique understanding of stress and coping from the autistic individuals' point of view. Stress is most often derived from managing new responsibilities in general and school, work, money, and relationships in particular. Tailored support services that follow the individual from adolescence through adulthood are needed to manage these stressors. Researchers and service providers can utilize these recommendations for future program development. Furthermore, the method used in this study can be replicated to facilitate autistic individual input on future program development.

Why is this an important issue?: Few studies have examined what autistic young adults go through as they move from childhood to adulthood. Moving from high school to more adult duties is stressful for all young adults. It is unclear how autistic young adults deal with these changes. What was the purpose of this study?: We wanted to better understand the experiences, stressors, supports, and coping styles of autistic young adults as they move from childhood to adulthood. What did the researchers do?: We asked autistic young adults to describe their experiences, stressors, and how they cope as they age from teen years to adulthood. Fifteen autistic young adults were interviewed through Google Document or in-person interviews. To analyze the data, three researchers read each interview to find ideas and experiences those young adults shared. The researchers met many times to discuss the shared ideas and experiences they found. Researchers discussed these ideas until they agreed on what the main shared ideas (or themes) were. Two researchers then reread all the interviews to match ideas with the interview quote. What were the results of the study?: Researchers found three ideas (or themes) that all or most autistic young adults talked about. (1) Young adults said that they felt stress in physical and emotional ways. (2) Dealing with new responsibilities, many responsibilities, and relationship problems were their main causes of stress. (3) Autistic young adults said that they had different ways of dealing with their stress. Some young adults used meditation and others played games on their computers or phones or looked at pictures to deal with stress. Many young adults also said that they get help from family and friends when they are stressed out. What do these findings add to what was already known?: These findings help us better understand what stressors autistic young adults had and how they deal with this stress. Most studies ask caregivers questions about their young adults. Learning about stressors and ways to deal with stress using the young adult's own words is an addition to what we previously knew or what was published. Furthermore, the use of Google Doc discussions to collect data is new and was a good method of data collection. What are potential weaknesses in the study?: We only had 15 autistic young adults agree to be in the study, and most were white and male. Young adults with severe communication limits were not able to be in the study. How will these findings help autistic adults now or in the future?: We know more about the ways autistic young adults feel stress and anxiety and how they deal with it. This information can help service workers give autistic young adults the support they need. The findings from this study can inform new interventions and can help health care workers, support service workers, and family members help autistic young adults deal with their stress and provide more ways to deal with their life stress.

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. Interested individuals completed a survey and individual interview. Semistructured interview guides included questions about transition experiences, current independence, and future goals. Interview transcripts were analyzed using thematic analysis. RESULTS: The desire of young adults with autism spectrum disorder for independence was shown within 4 themes. YA-ASD described their vision of adulthood along with their need for improved skills in driving, living independently, and decision-making. CONCLUSION: The findings indicate YA-ASD desire to be independent but lack the specific support services to get there.

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.

Background: 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. Objective: Benefits of CAs for children with ASD have been identified, but little is known about the welfare of CAs in these homes. This study explored the welfare of cats (N = 10) screened for ideal social and calm temperament using the Feline Temperament Profile (FTP) and adopted by families of children with ASD. Methods: Cat stress was measured using fecal cortisol, weight, and a behavior stress measure (cat stress score). Measures were taken at baseline in the shelter, 2-3 days after adoption, and at weeks 6, 12, and 18. Result: Outcome measures suggested the adopted cats' stress levels did not increase postadoption; however, the small sample size limited analytical power and generalizability. Conclusion: This study provides preliminary evidence for the success of cat adoption by families of children with ASD, when cats have been temperament screened and cat behavior educational information is provided. Further research is warranted to confirm these findings.

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 (STARx) and other validated measures. A Confirmatory Factor Analysis and item culling resulted in 30 items addressing six subscales. Content, criterion, and construct validity and internal consistency indicated high validity and reliability for the scale and subscales. HRI is a validated caregiver-report measure of YA-ASD's self-management, safety, and transition skills. This novel measure will be a useful tool in clinics, intervention development, and research.

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. DESIGN AND METHODS: This was the first randomized controlled trial of adoption of a temperament screened cat by families of children with ASD. Families assigned to the treatment group adopted a cat and were followed for 18 weeks. Families assigned to the control group were followed for 18 weeks without intervention, then converted to treatment, by adopting a cat and were followed another 18 weeks. Adopted cats were screened using the Feline Temperament Profile to identify a calm temperament. Surveys measured children's social skills and anxiety and parent/child cat bonding. RESULTS: Our study (N = 11) found cat adoption was associated with greater Empathy and less Separation Anxiety for children with ASD, along with fewer problem behaviors including Externalizing, Bullying and Hyperactivity/Inattention. Parents and children reported strong bonds to the cats. CONCLUSION: This exploratory study found introduction of a cat into the home may have a positive impact on children with ASD and their parents. Based on this intial finding, future studies with larger sample sizes are recommended. PRACTICE IMPLICATIONS: If parents of children with ASD are considering cat adoption, health care providers might consider recommending adoption of a cat screened for calm temperament.

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. METHODS: This study used a qualitative descriptive framework to explore the experiences and perspectives of 10 PCPs who completed the ECHO Autism: Transition to Adulthood program. Semistructured focus groups, conducted through Zoom videoconferencing, were used to explore these topics. RESULTS: Three overarching categories were identified: (1) beneficial and influential aspects of the ECHO, (2) perceived challenges, and (3) suggestions for improvements and adjustments. Overall, participants found the program highly beneficial, describing an increased sense of community and comprehensive recommendations from a multidisciplinary team. Challenges included difficulties participating in the program during clinical hours and difficulties meeting the educational needs of participants with a wide range of previous experience caring for TAY-ASD. Recommendations included embedding the location-specific material into the program to account for regional differences and the use of an online platform for participants to ask questions and discuss issues outside of the regular sessions. CONCLUSION: The study results can inform the development and implementation of new virtual PCP trainings and future ECHOs, including the revision and broad implementation of the ongoing ECHO Autism: Transition to Adulthood program.

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. Autistic young adults (AYA) are half as likely to receive HCT services compared with special needs young adults. Furthermore, there are no HCT readiness measures that address the unique needs of AYA. Methods: This study used a mixed-methods approach to develop and test a holistic caregiver-reported measure of HCT readiness for AYA Health-Related Independence (HRI). The phases used to create and test the HRI measure included: (1) construct and question topic development through qualitative data collection with AYA and caregivers; (2) question development with clinicians and caregivers; and (3) initial question testing utilizing cognitive interviews and pretesting of the instrument with caregivers. Results: Measure constructs were developed based on qualitative findings from AYA (n = 27) and caregivers (n = 39). The researchers identified 12 themes related to HRI from the data. Next, questions were developed for each theme by caregivers (n = 5) and clinicians (n = 25). Finally, questions and the survey format were tested using caregiver feedback in the form of cognitive interviews (n = 15) and pretests (n = 21). The final version of the caregiver-reported HRI measure included 8 constructs and 58 questions. Conclusion: The development of the HRI measure was a comprehensive and iterative process. This article highlights the measurement development process and its potential impact on AYA, caregivers, and clinicians. Lay summary: Why was this study done?: Health care transition services help youth keep their health insurance, transition to an adult doctor smoothly, and promote independence. To date, there is no health care transition intervention for autistic young adults. Few studies have examined how to prepare autistic young adults to manage their health and self-care needs and the transition to an adult model of care. We wanted to fill in these gaps by creating a measure of health care transition readiness for autistic young adults.What was the purpose of this study?: The purpose of the study was to develop the Health-Related Independence measure based on autistic young adult and caregiver input. We define Health-Related Independence as a young adult's ability to manage their health, healthcare, and safety needs. We also wanted to examine the measure to make sure it was easy to read, made sense, and was easy to answer.What did the researchers do?: We used a mixed-methods approach to develop and test the Health-Related Independence measure. There were three parts to the study: (1) we conducted individual interviews with autistic young adults and focus groups with caregivers to understand what topics should be included in the measure, (2) clinicians and caregivers then used those topics to create specific survey questions, (3) we conducted interviews and online pretest of the measure with caregivers.What were the results of the study?: The autistic young adults and caregivers identified twelve topics/themes to include in the Health-Related Independence Measure. Caregiver feedback helped make the measure shorter and easier to understand and complete. The final version of the caregiver-reported HRI measure included 58 questions.What do these findings add to what was already known?: We learned that young adults and caregivers have a broad understanding of health-related independence such as safety and sexuality/relationship knowledge. There weren't any measures to capture these ideas. This study created an important new measure that can be used in healthcare clinics, schools, and at home.What are potential weaknesses in the study?: This study aimed to work with autistic young adults to develop the Health-Related Independence measure, but due to funding and study limitations, we only included young adults in the 1st phase of the study. Caregivers were used as proxy reporters in phases 2 and 3. Not including autistic young adults in phases 2 and 3 was a weakness of the study. Future research should aim to fully incorporate young adults into the research process. Their views should inform the development of the qualitative interview guides and all portions of the study.How will these findings help autistic adults now or in the future?: The Health-Related Independence measure can help caregivers and health care providers identify areas in which the autistic young adults are successful and areas of needed improvement to assist in the successful transition to adult care and adult life. The authors are currently working on a study proposal to validate the Health-Related Independence measure as a self-assessment tool for young adults to take themselves.

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. Caregivers (n = 479) reported their young adults with autism spectrum disorder as having moderate overall self-determination (x = 38; standard deviation = 9.04) with low capacity (x = 15.3; standard deviation = 5.67) and high opportunities at home (x = 23.1; standard deviation = 4.59). Young adults with autism spectrum disorder with intellectual disability or severe autism spectrum disorder symptomology experience significant disparities in overall self-determination compared to those without intellectual disability and less frequent symptom expression and severity. Barring severity indicators, there were few significant predictors of self-determination. Findings show a breakdown in self-determination skill-building. Young adults with autism spectrum disorder with intellectual disability or severe symptomology experienced significant disparities in self-determination. These findings show that current promotion of self-determination is not meeting the needs of young adults with autism spectrum disorder. Future interventions must identify what supports young adults with autism spectrum disorder need to capitalize on these opportunities to be independent and exert autonomy in their daily lives.

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 (n = 16) in best-practice care for transition-age youth and young adults with autism spectrum disorder. The Extension for Community Healthcare Outcomes Autism Transition program consisted of 12 weekly 1-h sessions connecting primary care providers to an interdisciplinary expert team via multipoint videoconferencing. Sessions included brief didactics, case-based learning, and guided practice. Measures of primary care provider self-efficacy, knowledge, and practice were administered pre- and post-training. Participants demonstrated significant improvements in self-efficacy regarding caring for youth/young adults with autism spectrum disorder and reported high satisfaction and changes in practice as a result of participation. By contrast, no significant improvements in knowledge or perceived barriers were observed. Overall, the results indicate that the model holds promise for improving primary care providers' confidence and interest in working with transition-age youth and young adults with autism spectrum disorder. However, further refinements may be helpful for enhancing scope and impact on practice.

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). Adolescents and young adults participated in semi-structured interviews to explore this topic. Using theme analysis, we uncovered four thematic categories: (1) interest in relationships, (2) ideal partners, (3) realities of adolescent and young adult relationships, and (4) advice about sex and relationships. Although many adolescents and young adults expressed wanting a relationship, few reported having partners. Among those that did, their actual relationships rarely met ideals. Most adolescents and young adults talked with parents and friends but not healthcare providers about sex and relationships. All adolescents and young adults described the need for additional education. Adolescents and young adults express the need for education that covers basic safety and sexual health topics as well as social/relationship skills building and courtship modeling. These findings can inform the design of tailored sexual health intervention. Future research should examine specific issues related to sexuality from the adolescents' and young adults' perspectives.

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). A semi-structured guide elicited information from both the groups about the youth's physical, emotional, and social transition to adulthood. Thematic analysis, including coding and analytical memos, identified key themes within and across youth and caregiver discussions about sex and relationships. RESULTS: Thematic analysis of interviews revealed overarching themes about companionship, interest and experience, and access to sexual information across both the groups. Themes included different nuances among caregivers and youth, however. Caregivers expressed more future-oriented concerns than youth and overestimated their knowledge of their youth's interest and experience with sex and comfort confiding in caregivers. Youth described relationships and information sources of which their caregivers were unaware. CONCLUSION: Interventions for both caregivers and youth can support healthy and safe intimate relationships among youth with autism spectrum disorder. By comparing youth and caregiver dialogues, this study adds to what we know, and it can be used to develop a blueprint for improving communication patterns that not only include but also extend well beyond sexual health.

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. Caregivers participated in focus groups and adolescents participated in semi-structured interviews. Results: Thematic analysis of dyads' responses highlighted three common themes: (a) efforts toward independence, (b) low self-efficacy for adolescents' independence, and (c) desire for independence. Nuances in responses indicated that although members of dyads shared many experiences, they were not communicating these experiences with each other. Conclusions: Results suggest both groups understand the importance of health-related independence and are motivated to achieve independence but lack skills and supports. Improved communication about experiences and goals between caregivers, adolescents, and the care team are needed. These findings can inform future interventions to better support adolescents' transition to adult health care.

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. METHODS: The 2009-2010 National Survey of CSHCN is a nationally representative cross-sectional study with caregiver's reports on 40,242 children (0-17 years). Children were categorized into one of seven conditions groups: physical health (PHC), mental health (MHC), developmental disability (DD), physical and mental (PHC and MHC), physical and developmental (PHC and DD), mental and developmental (MHC and DD) and physical, mental and developmental (PHC, MHC, and DD). Unadjusted and adjusted analyses determined associations between condition group and quality and access indicators. RESULTS: Children with DD, alone or in combination with another condition, were significantly less likely to meet each indicator (p < 0.01) after adjusting for individual demographic, child's activity limitations and family-related characteristics. Compared with children with PHC, those with all three conditions (PHC, MHC, and DD) had the lowest odds of access to medical home (61 % decreased odds (DO)), community services (67 % DO), and adequate insurance (26 % DO); MHC and DD had the lowest odds of partnering in decision making (51 % DO); DD had the lowest odds of healthcare transition service (66 % DO). CONCLUSIONS: Children with DD and multiple conditions experience disparities in quality and access to healthcare services, meeting most indictors half as often as other CSHCN.

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

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. DESIGN AND METHODS: Eleven young adults captured their experiences growing up with ASD via images, and participated in three group photo discussions, an individual photo interview, and a photo exhibit. Qualitative data for analysis included session transcripts and photographs. We used strategies of theme analysis to understand participants' experiences. RESULTS: The mean age of the sample was 20years, and 7 participants were male. Three sub-themes describe youth's strengths: 1) special interests that cultivated positive emotions and coping strategies; 2) skills and activities that evoked pride; and 3) reframing ASD as special versus a disadvantage. CONCLUSIONS: The Photovoice method is well-suited to help young adults identify and express their strengths. Self-generated images and stories may offer a creative and effective form of communication for young adults with ASD. PRACTICE IMPLICATIONS: Health care practitioners can capitalize on how Photovoice helps young adults express themselves by using images to understand their health priorities and involve young adults in their care plans. With images of strength, for example, nurses can build young adults' confidence and help these individuals to identify areas of their mental and physical lives in which they can thrive and experience improved quality of life.

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. Thematic analysis was used to identify salient recurring patterns in the data. RESULTS: Thematic analysis identified important topics in session transcripts and 184 photographs. Youth with ASD expressed many perspectives about their adult lives, which centered around 3 themes: the meaning of adulthood; desire for independent living; and employment goals. CONCLUSION: Findings identified what youth with ASD want and need to achieve adulthood. This study demonstrated the utility of a new methodology to provide opportunities for youth to share their experiences and define their priorities.

'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. RESULTS: Both groups experienced fear and anxiety about transitioning, unmet needs were also high, leaving caregivers struggling to fill gaps. Most caregivers and youth reported lacking individualized services. Caregivers faced difficulty in motivating youth and creating opportunities for education and employment. Although youth have future goals, they were unaware of steps needed to accomplish them and hesitant to talk to caregivers. CONCLUSIONS: Findings indicate considerable unmet needs for caregivers and youth with ASD. Perspectives of both groups should be considered when developing programmes and educating providers.