The interplay of supports and barriers during the transition to adulthood for youth on the autism spectrum.

PURPOSE: Transition to adulthood is a complex process that involves important life domains such as education, work, independent living, community, health, and social relationships. Autistic youth face the transition with greater challenges than their peers, and there continues to have significant gaps in the services as they approach young adulthood. The study was conducted to understand the complex interplay between supports and barriers to participation in the transition process. METHOD: Data was collected through six focus groups with 24 participants (7 parents, 11 practitioners, 6 autistic youth), digitally audio-recorded, transcribed, and analyzed using thematic analysis. RESULTS: Four themes were reported: Inadequacy of Services, Ambivalence about Formal Services and Support, Understanding Good Partnership, and Evolving Parental Involvement. While parents and practitioners see the fragmented services and lack of comprehensive support as the most prominent challenge, autistic youth feel ambivalent about the type of services they need. Practitioners address the importance of establishing an appropriate level of engagement with parents in the transition process. Autistic youth expect their parents to set a boundary that affirms their independence. CONCLUSIONS: Our study highlights the need to elicit input across different stakeholders to make transition services centralized, easily accessible, and individualized.Implications for RehabilitationIt is important to have a systematic road map, early preparation of families and autistic youth about the array of adult transition services, and a centralized hub of information to be disseminated.Disability service agencies should develop and implement plans for enhancing outreach and services to transition youth on the autism spectrum and their families.Practitioners need to identify locally available resources and channels for outreach and make available service more visible by producing transition-related materials with examples of current legislative information, problem solving, and best practices.Practitioners should consider how autistic youth identify their needs and wants may be different than how service providers and parents conceptualize them.It is critical to capitalize appropriate levels of caregivers/family support and engagement by provision of education about policies and guidelines for communication and collaboration.

The Role of Acceptance in the Transition to Adulthood: A Multi-Informant Comparison of Practitioners, Families, and Youth with Autism.

This study investigated the role of acceptance during the transition process among autistic young adults, parents, and practitioners. Six focus groups were run and thematic analysis was used to identify four themes: Youth on the autism spectrum discussed transition as a time where Self-Advocacy and Self-Acceptance were salient. Both youth and parents discussed the Lack of Understanding and Acceptance they experience. Particularly, youth highlighted the lack of understanding of sensory needs and parents underscored the lack of understanding by medical professionals. In contrast, practitioners highlighted the presence of Community Openness. Both practitioners and parents discussed Finding Personal Support through Acceptance. Self-acceptance and acceptance of autism are imperative for autistic young adults and families to achieve well-being.

The parent role in school-based teams for adolescents with autism spectrum disorder.

For youth with autism spectrum disorder (ASD) and their families, adolescence presents unique challenges that require parents work closely with school teams. Both parent involvement in education and family school partnerships are associated with positive student outcomes. However, research characterizing parents' role in working with school-based teams across the middle and high school years for youth with ASD is limited. The present study presents qualitative data illustrating the perspectives of 23 parents of students with ASD regarding their experiences working with middle and high school teams. Participants completed semistructured interviews, which were analyzed using interpretative phenomenological analysis. Six themes were reflected in the experiences and perspectives of parents, including collaboration/partnership, advocacy, relationships, parental background, expectations, and impact on the parent. Results indicated variability in the nature and impact of parents' experiences and a need for intentional formation of meaningful partnerships between educators and families that honor the unique needs and strengths of youth and maximize team effectiveness. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Needs, strain, coping, and mental health among caregivers of individuals with autism spectrum disorder: A moderated mediation analysis.

This study investigated the relationships among caregiving strain, coping, and mental health among caregivers of individuals with autism spectrum disorder (ASD) and the mediational moderation of caregiver needs. One hundred and ninety-three caregivers of individuals with ASD completed an online survey. Results showed that maladaptive coping behaviors were significant in mediating the relationship between strain and mental health. Professional service and emotional caregiving needs moderated the relationship between maladaptive coping and mental health at times of high caregiving strain, but not involvement, health information, and instrumental support needs. Results highlighted the negative effect of maladaptive coping, as well as professional service and emotional support needs were salient in moderating coping and mental health in times of high caregiving strain.

Factors that affect the physical and mental health of caregivers of school-age children and transitioning young adults with autism spectrum disorder.

BACKGROUND: Although studies have examined quality of life (QOL) among family caregivers of individuals with autism spectrum disorder (ASD), little is known about potential differences in QOL based on the age of the individual with ASD, particularly in relation to caregivers' needs, beliefs and coping mechanisms. METHOD: This study investigated 132 caregivers of school-age children and 61 caregivers of transitioning young adults with ASD on measures of caregiving, strain, coping, family needs and QOL. RESULTS: The results indicated that there were no significant differences in QOL based on the age of the individuals with ASD, although parents of children reported significantly more caregiving behaviours, with coping, internalized strain and health information needs predicted mental health QOL. DISCUSSION: Age of the individual with ASD was not significantly related to caregivers' QOL. More research is needed to determine independent predictors of caregiver QOL across the lifespan.

Types of strain among family members of individuals with autism spectrum disorder across the lifespan.

BACKGROUND: Although increased caregiver strain is often found among family caregivers of individuals with autism spectrum disorder, it is still unclear as to how different types of strain relate to amount and types of caregiving across the lifespan. AIMS: The present study examined different types of strain (i.e. subjective internalized strain, subjective externalized strain, and objective strain) and how such strain relates to the amount of caregiving responsibilities. METHODS: Data was collected via online survey from a sample of 193 family caregivers of individuals with ASD from the United States, Canada, and the Republic of Ireland. Participants completed measures of strain and caregiving responsibilities, as well as coping, demographics, and services needed and received by the individual with ASD. RESULTS: Caregivers reported higher levels of objective strain than subjective, and caregiving responsibility was related to objective and subjective internalized strain. Coping style was strongly correlated with all types of strain, and unmet service needs were significantly related to objective and subjective internalized strain. Caregiving behaviors were only related to objective strain. CONCLUSION: The present results indicate that, although caregiving responsibility is related to objective and subjective internalized strain, the relationship is perhaps not as strong as the relationship between coping mechanisms and strain. Future research is needed to understand different types of strain and develop strategies to help caregivers.

Factor Structure, Internal Consistency, and Screening Sensitivity of the GARS-2 in a Developmental Disabilities Sample.

The Gilliam Autism Rating Scale-Second Edition (GARS-2) is a widely used screening instrument that assists in the identification and diagnosis of autism. The purpose of this study was to examine the factor structure, internal consistency, and screening sensitivity of the GARS-2 using ratings from special education teaching staff for a sample of 240 individuals with autism or other significant developmental disabilities. Exploratory factor analysis yielded a correlated three-factor solution similar to that found in 2005 by Lecavalier for the original GARS. Though the three factors appeared to be reasonably consistent with the intended constructs of the three GARS-2 subscales, the analysis indicated that more than a third of the GARS-2 items were assigned to the wrong subscale. Internal consistency estimates met or exceeded standards for screening and were generally higher than those in previous studies. Screening sensitivity was .65 and specificity was .81 for the Autism Index using a cut score of 85. Based on these findings, recommendations are made for instrument revision.

Gender differences in caregiver strain, needs for support, social support, and quality of life among spousal caregivers of persons with multiple sclerosis.

BACKGROUND: Caregivers of individuals with MS may experience unique caregiver strain due to the age at onset and progressive nature of the disease. Additionally, because MS is more prevalent in women, men often become spousal caregivers. However, gender differences in psychosocial adjustment among caregivers have not been fully explored. OBJECTIVE: The purpose of this study was to explore gender differences in the need for various supports and type of social support needed, caregiver strain, and quality of life among caregivers for individuals with MS. METHODS: 106 caregivers participated in this study. Independent sample t-tests and multiple regression analyses were conducted to examine gender differences in strain, need for supports, social support, and quality of life. RESULTS: Analyses revealed gender difference among important psychosocial variables. Specifically, women reported higher levels of caregiver strain, higher needs for emotional support, and higher perceived social support. Additionally, multiple regression analyses revealed an inverse relationship between expressed emotional needs and quality of life for men, but not for women. CONCLUSIONS: MS caregivers experience significant strain that diminishes quality of life. Social support and needs fulfillment can act to buffer this stress; however, results indicate that this varies by gender, with gender differences observed in strain, perceived support, and expressed needs among MS caregivers. The study implications for rehabilitation research are discussed.

Randomized Controlled Trial of Mind Reading and In Vivo Rehearsal for High-Functioning Children with ASD.

This randomized controlled trial evaluated the efficacy of a computer software (i.e., Mind Reading) and in vivo rehearsal treatment on the emotion decoding and encoding skills, autism symptoms, and social skills of 43 children, ages 7-12 years with high-functioning autism spectrum disorder (HFASD). Children in treatment (n = 22) received the manualized protocol over 12 weeks. Primary analyses indicated significantly better posttest performance for the treatment group (compared to controls) on 3 of the 4 measures of emotion decoding and encoding and these were maintained at 5-week follow-up. Analyses of secondary measures favored the treatment group for 1 of the 2 measures; specifically, ASD symptoms were significantly lower at posttest and follow-up.

Effects of parent management training programs on disruptive behavior for children with a developmental disability: a meta-analysis.

This meta-analysis determined the effects of parent management training (PMT) on disruptive behaviors in children with a developmental disability. Parent management training programs, based on behavioral theories of psychology, are commonly used in addressing disruptive behavior in children. Eleven studies met inclusion criteria with a total of 540 participants, with 275 in experimental groups and 265 in control groups. The effect of PMT on the disruptive behavior in children with a developmental disability was significant (g=0.39). The moderator effects of type of PMT, delivery type and setting, and administrator level of education were also significant. The moderator effects of child age, and session number and duration were not significant in this meta-analysis.

Connecting family needs and TBI caregiver mental health in Mexico City, Mexico.

PURPOSE: This study examined relationships between caregiver mental health and the extent to which needs were met in families of individuals with traumatic brain injury (TBI) in Mexico City, Mexico. METHOD: Sixty-eight TBI caregivers completed Spanish versions of instruments assessing their own mental health and whether specific family needs were met. RESULTS: Twenty-seven per cent of caregivers reported clinically significant depression levels, 40% reported below-average life satisfaction and 49% reported mild-to-severe burden. Several of the most frequently met family needs were in the emotional support domain, whereas the majority of unmet needs were in the health information domain. Family needs and caregiver mental health were significantly and highly related. When family needs were met, caregiver mental health was better. The strongest pattern of connections in multivariate analyses was between family instrumental support (assistance in the completion of daily life tasks) and caregiver burden, such that caregivers with less instrumental support had greater burden. Additional results suggested that instrumental support uniquely predicted caregiver satisfaction with life, burden and depression. CONCLUSIONS: Interventions for TBI caregivers, especially in Latin America, should help family members determine how best to meet their health information and instrumental needs, with the former being likely to improve caregiver mental health.

Comparison of Adaptive Behavior Measures for Children with HFASDs.

Adaptive behavior rating scales are frequently used to gather information on the adaptive functioning of children with high-functioning autism spectrum disorders (HFASDs), yet little is known about the extent to which these measures yield comparable results. This study was conducted to (a) document the parent-rated VABS-II, BASC-2, and ABAS-II adaptive behavior profiles of 6- to 11-year-olds with HFASDs (including relative strengths and weaknesses); (b) examine the extent to which these measures yielded similar scores on comparable scales; and (c) assess potential discrepancies between cognitive ability and adaptive behavior across the measures. All three adaptive measures revealed significant deficits overall for the sample, with the VABS-II and ABAS-II indicating relative weaknesses in social skills and strengths in academic-related skills. Cross-measure comparisons indicated significant differences in the absolute magnitude of scores. In general, the VABS-II yielded significantly higher scores than the BASC-2 and ABAS-II. However, the VABS-II and ABAS-II yielded scores that did not significantly differ for adaptive social skills which is a critical area to assess for children with HFASDs. Results also indicated significant discrepancies between the children's average IQ score and their scores on the adaptive domains and composites of the three adaptive measures.

Prevalence and Predictors of Psychotropic Use in Children with High-Functioning ASDs.

This study examined (1) the prevalence of psychotropic medication use for a sample of children with high-functioning autism spectrum disorders (HFASDs), (2) the extent to which psychotropic agents were linked to targeted symptoms, and (3) predictors of psychotropic use. A total of 115 children, ages 6-13, with HFASDs who were enrolled in psychosocial treatment trials were included in this study. Parents completed extensive background and rating forms prior to treatment that included data on demographic characteristics, child health, child medication use, and child ASD-related symptoms. Results indicated that 33% (n = 38) of the sample was taking psychotropic medication with the most common being stimulants (25%; n = 29), antidepressants (10%; n = 12), and neuroleptics (6%; n = 7). All children taking stimulants had target symptoms that were appropriate for stimulant medication, whereas 57% of those taking neuroleptics and 42% of those taking antidepressants did not have targeted symptoms consistent with the medication. Logistic regression for the major psychotropic drug categories indicated that lower IQ was a significant predictor of increased antidepressant and neuroleptic use. A higher level of ASD-related symptoms was related to the likelihood of stimulant use.

Comparison of saliva collection methods in children with high-functioning autism spectrum disorders: acceptability and recovery of cortisol.

This study compared cortisol concentrations yielded using three saliva collection methods (passive drool, salivette, and sorbette) in both in vitro and in vivo conditions, as well as method acceptability for a sample of children (n = 39) with High Functioning Autism Spectrum Disorders. No cortisol concentration differences were observed between passive and sorbette samples obtained in vitro or in vivo. The salivette derived concentration was lower than the other two methods for the in vitro derived comparisons but did not differ from the other methods when collected in vivo. Cross-day comparison for the salivettes was also found to differ significantly, whereas the cross-day comparisons did not differ for the passive method or the sorbette method. Overall, passive drool and sorbettes were found to produce similar and stable readings of cortisol, whereas the salivette yielded unstable and variable concentrations. Ratings suggested that the children generally perceived all methods as acceptable.

Anxiety and depression in children with HFASDs: symptom levels and source differences.

The purpose of this study was to: (1) examine symptom levels of anxiety and depression in children with high-functioning autism spectrum disorders (HFASDs) compared with matched control children using child self-reports and parent ratings; and (2) examine source differences within the two condition groups. An overall multivariate effect indicated significantly elevated depression and anxiety symptoms for children with HFASDs based on parent reports; however no significant between-group differences based on child self-reports. Within-condition source comparisons (parent vs. child) revealed a significant multivariate effect indicating a significant difference in symptoms of depression and anxiety for the HFASD group but none for the control. Correlations between parent and child reports for the HFASD group suggested some positive association between child-reports and parent-reports for depressive symptoms only; however, the difference in average scores reflected a substantial discrepancy in the magnitude of symptoms by rater. Implications for clinical assessment and future research are provided.

RCT of a manualized social treatment for high-functioning autism spectrum disorders.

This RCT examined the efficacy of a manualized social intervention for children with HFASDs. Participants were randomly assigned to treatment or wait-list conditions. Treatment included instruction and therapeutic activities targeting social skills, face-emotion recognition, interest expansion, and interpretation of non-literal language. A response-cost program was applied to reduce problem behaviors and foster skills acquisition. Significant treatment effects were found for five of seven primary outcome measures (parent ratings and direct child measures). Secondary measures based on staff ratings (treatment group only) corroborated gains reported by parents. High levels of parent, child and staff satisfaction were reported, along with high levels of treatment fidelity. Standardized effect size estimates were primarily in the medium and large ranges and favored the treatment group.

Catastrophizing as a cognitive vulnerability factor related to depression in workers' compensation patients with chronic musculoskeletal pain.

The purpose of this study was to examine the role of catastrophizing as a mediator and moderator between life stress and depression in a sample of workers' compensation patients with chronic musculoskeletal pain. Pain intensity, life stress (especially work and financial stress), and catastrophizing contributed significantly to depression. Catastrophizing was found to be partially mediating the relationship between life stress and depression and a moderator between social stress and depression. The results supported the role of catastrophizing as a cognitive vulnerability-stress factor related to depression in chronic pain patients. Screening for life stress and intervening early to prevent catastrophizing from occurring in the workers' compensation rehabilitation process may reduce psychosocial distress and enhance the overall effectiveness of rehabilitation programming for workers' compensation patients with chronic pain.

Effectiveness of a manualized summer social treatment program for high-functioning children with autism spectrum disorders.

This paper presents findings from the final two years of a four-year study investigating a manualized social treatment program for high-functioning children with autism spectrum disorders. The study sought to (1) replicate and expand findings from years one and two; (2) compare outcomes of participants who received response-cost feedback versus non-categorical feedback; and (3) provide further evidence of program feasibility. Results indicated significant improvements in social skills and problem behaviors, however no significant differences for face emotion recognition. Measures of several socially-related behaviors yielded mixed results based on rater. While parent ratings did not appear to favor one feedback format, staff ratings appeared to favor the response-cost format on some measures. Results also provided support for program feasibility.

Use of Dictionary of Occupational Titles (DOT) on formwork carpentry--a comparison between the United States and Hong Kong.

OBJECTIVES: This study aimed at investigating the utilization and applicability of the Dictionary of Occupational Titles (DOT) as a methodology to study the job profile (nature and physical demand) of formwork carpentry in the local situation. STUDY DESIGN: Thirty male formwork carpenters were recruited by convenient sampling to participate in a two-hour interview, with reference to the DOT Physical Demand Questionnaire (DOTPDQ) and the WestTool Sort Questionnaire. The information obtained was further consolidated by comparing the results from the interview to three construction sites and training guidelines from the formwork carpentry training centers. The triangulation of the data formulated a job profile of formwork carpenters. RESULTS: The results from the DOTPDQ revealed that workers' work demands were standing, walking, pushing, pulling, reaching, climbing, balancing, stooping, crouching, lifting, carrying, handling and near acuity. This produced an agreement of 84.6% with the original DOT. A discrepancy was found in the demands of kneeling, fingering, far acuity and depth perception. CONCLUSIONS: The discrepancy between the data from the United States and local appeared to be minimal. It was thus inferred that the DOT-based job profile was largely valid for describing formwork carpentry in Hong Kong. In-depth analysis should be conducted to further substantiate the validity of utilizing the DOT system for other job types and their physical demands.