Patterns of Mental Health Service Use During the Transition to Adulthood Among Autistic Adolescents and Young Adults.

Background: The time of transition into adulthood, especially when leaving school, is a time when many autistic adolescents and young adults (AYA) may stop receiving mental health services that they have relied on, leading to worse mental health outcomes. The purpose of this study was to describe patterns of mental health service use during transition to adulthood among autistic AYAs. Methods: We performed a cross-sectional study using electronic health records from years 2015 to 2019 from one large university health care system. We included autistic individuals ages 11-27 with at least one clinical encounter annually in the cohort. Outcomes included psychotropic medications and psychotherapy received, psychotropic polypharmacy, psychiatric emergency department (ED) visits, and adverse drug events. Results: Almost half of the 529 patients in the cohort received polypharmacy. The most common treatment was medication only (56.9%), followed by no treatment (22.7%), medication plus psychotherapy (18.7%), and psychotherapy only (data masked). The 17-21 age group had the highest odds of a psychiatric ED visit, whereas the 22-27 age group had the highest odds of receiving psychotropic medications and polypharmacy. Black AYA were more likely to receive psychotherapy and less likely to receive psychotropic polypharmacy than non-Hispanic Whites. Conclusion: Autistic individuals may benefit from more support from the health care system for their transition into adulthood to maintain use of beneficial mental health services as they leave school and to reduce the frequency of adverse outcomes. Access to providers experienced treating the complex needs of autistic individuals is important to reduce disparities.

Why is this an important issue?: Autistic adolescents and young adults often do not receive the mental health care services they need. As they transition into adulthood, they may lose important mental health services they relied on during childhood. Losing services may negatively affect their health and produce bad outcomes such as emergency department visits. Previous studies have suggested that autistic individuals often stop receiving important services as they leave school and lose access to school-based services. What was the purpose of this study?: The purpose was to describe patterns of mental health service use during the transition to adulthood among autistic adolescents and young adults. Underutilized services might indicate areas where the health care system needs to improve. What did the researchers do?: We used data from electronic health records from a large university health system in the southeastern United States. We identified autistic adolescents and young adults ages 11­27 in the data. We analyzed whether they received medication and/or psychotherapy for their mental health, and whether they had emergency department visits and adverse drug events. We also examined polypharmacy, meaning the use of multiple medications of different classes for mental health. What were the results of the study?: Almost half of the 529 included patients experienced polypharmacy. The majority received medication only, whereas smaller percentages received medication plus psychotherapy or psychotherapy alone. Emergency department visits were most common in the 17­21 age group, and psychotropic medications and polypharmacy were most used in the 22­27 age group. Black individuals were more likely to receive psychotherapy and less likely to receive psychotropic polypharmacy than non-Hispanic Whites. What do these findings add to what was already known?: These findings show that providers are relying heavily on medication, often including polypharmacy, to treat mental health issues in autistic adolescents and young adults. What are potential weaknesses of the study?: The study used only one health care system in one state and may not reflect what happens in other states with different policies. Data may include a high number of patients with complex medical conditions, which may not reflect the typical patient's experience. Medications prescribed by providers outside this particular health system may not be captured. How will these findings help autistic adults now or in the future?: These findings reveal potential areas for improvement for providers and health systems in treating autistic adults. Ensuring that autistic adolescents can continue to receive important mental health services as they age into adulthood can improve their health.

A Randomized Clinical Trial Targeting Daily Living Skills in Autistic Adolescents Without an Intellectual Disability Before the Transition to Adulthood.

OBJECTIVES: In the United States, more than 75,000 autistic adolescents graduate from high school each year, and many lack the skills to successfully transition to college, work, and independent living. Daily living skills (DLS) in autistic adolescents without an intellectual disability (ID) fall 6 to 8 years behind peers. Better DLS are linked to more positive adult outcomes for autistic individuals. Surviving and Thriving in the Real World (STRW) is the only known evidence-based intervention that targets age-appropriate DLS in autistic adolescents without ID. The study objective was to evaluate STRW's efficacy compared with an active comparator (Program for the Evaluation and Enrichment of Relational Skills [PEERS]). METHOD: Autistic adolescents in their last 2 years of high school were randomized to STRW or PEERS. Outcome measures were the Vineland Adaptive Behavior Scales, Third Edition (VABS-3), DLS domain and subdomains (Personal, Domestic, Community), and DLS Goal Attainment Scaling (DLS-GAS) areas (Morning Routine, Cooking, Laundry, Money). RESULTS: Adolescents were randomly assigned to STRW (n = 34) or PEERS (n = 30). Owing to COVID-19, 28.1% received in-person intervention and 71.9% received telehealth intervention. STRW youth made significant gains on the VABS-3 DLS domain ( p = 0.01) and Domestic subdomain ( p = 0.005) and DLS-GAS Total, Laundry, and Money areas (all p 's < 0.05) compared with PEERS. CONCLUSION: STRW shows promise for acquiring age-appropriate DLS compared with PEERS. Adolescents in STRW progressed toward achieving DLS in the average range and closing the gap between chronological age and DLS. By improving DLS, STRW may facilitate more successful adult outcomes.

Predictive Analysis of Parent Activation and Autism.

We examined parent activation in families with autistic children over time. Activation is one's belief, knowledge, and persistence in obtaining and managing one's care (e.g., patient activation) and others (e.g., parent activation) and is associated with better outcomes. Four aims were examined: the associations between baseline parent activation and follow up treatment/outcome, between changes in activation and changes in treatment/outcome, differences in activation and treatment/outcome across demographic groups (e.g., gender, race, ethnicity, and income) and comparison of results using three different assessment approaches of parent activation, the Guttman scale (standard approach) and two factor subscales (Yu et al., in J Autism Dev Disord 53:110-120, 2023). The first factor tapped into behaviors aligned with highly active, assertive parental actions (Factor 1: Activated). The second tapped into behaviors representative of uncertainty, passivity, being overwhelmed, with growing awareness of the need for activation (Factor 2: Passive). Findings varied with assessment methods applied. The two subscales assessment approach produced the strongest effect sizes. Baseline activation was related to improved child outcomes at follow-up for Factor 1: Activated and to poorer child outcomes at follow-up for Factor 2: Passive. Changes in activation were unrelated to changes in treatment/outcomes. Outcomes differed based on the activation assessment approach used. Against expectations, activation remained the same over time. Further, no differences in outcomes were observed based on race, ethnicity, or family income. The results suggest that parent activation may behave differently than patient activation based on prior studies. More research is warranted on activation of parents of autistic children.

Practice Makes Proficient: Evaluation of Implementation Fidelity Following COMPASS Consultation Training.

Objective: To test a training package for COMPASS, a multi-level consultation and coaching intervention for improved educational outcomes of students with ASD. Method: Using a Hybrid Type 3 design with emphasis on implementation and a multidimensional approach to evaluating implementation outcomes, we tested a training package with community-based consultant trainees (CTs) unfamiliar with COMPASS and evaluated acceptance, appropriateness, feasibility, and fidelity from multiple sources (trainees, teachers, and parents). Results: Results confirm that COMPASS-naïve CTs can be successfully trained. At least one feedback session was needed to achieve proficiency. Initial fidelity ratings between researchers and CTs were disparate suggesting self-report may not be adequate. Four feedback opportunities were required to achieve proficiency in writing intervention plans, an activity particularly challenging for CTs. Teachers and parents perceived COMPASS as acceptable, appropriate, and feasible. CTs knowledge of EBPs increased significantly following training; however, positive attitudes toward EBPs did not. Conclusions: The implementation outcomes suggest that the training package was effective for training CTs; however, additional practice with writing intervention plans is warranted.

Parent Activation Measure for Developmental Disabilities (PAM-DD) in Caregivers of Individuals With ASD.

Activation refers to patients' belief, knowledge, ability, and persistence to manage care. The concept is adapted to parent activation in developmental disorders. This study examined the psychometrics of the Parent Activation Measure for Developmental Disabilities (PAM-DD) and factors related to parent activation in ASD. Data from 658 caregivers of children with ASD in the Autism Treatment Network Registry Call Back Assessment study were analyzed. The actual ordering of the scale items was inconsistent with the assumptions of a Guttman scaling. Factor analysis revealed two PAM-DD factors. Lower child symptom severity was related to higher Factor 1 and lower Factor 2 activation. Future studies should use caution when treating PAM-DD as a Guttman and unidimensional scale.

Individualized Education Program Quality for Transition Age Students with Autism.

BACKGROUND: Students with ASD have some of the worst postsecondary outcomes when compared to other students with disabilities indicating transition planning may not be working effectively. One source of support for postsecondary planning is development of the transition Individualized Education Program (IEP). However, little research is available to describe the current contents of transition IEPs for students with ASD. This study aimed to describe IEP and postsecondary planning quality for students with autism in their final year of high school. METHOD: IEPs for 20 students with autism (Mage = 18.2 years; SD = 1.1) from two mid-southern states were analyzed. Descriptive analyses were used to identify strengths and weaknesses of IEPs and postsecondary goals based on federal law requirements and best practice recommendations. RESULTS: IEPs contained an average of 3.1 IEP goals and 1.6 postsecondary goals. IEP goals were most frequently related to academic, learning/work, or communication skills. All IEPs contained an employment postsecondary goal while less than half of the IEPs included an independent living postsecondary goal. Key findings include lack of goals related to social skills and the lack of alignment between present levels of performance, IEP goals, and postsecondary goals. CONCLUSIONS: IEPs for students with ASD in their final year of school do not consistently meet standards outlined by federal law or best practice recommendations necessary for successful transition from high school.

Goal Attainment Scaling: An Idiographic Measure Sensitive to Parent and Teacher Report of IEP Goal Outcome Assessment for Students with ASD.

Young students with ASD have instructional needs in social, communication, and learning skills that should be reflected in their Individualized Education Program (IEP). Research suggests that many of these goal areas present a challenge for special educators because of problems with measurability. The current study utilized an idiographic approach called Goal attainment scaling (GAS) for measuring IEP progress of individualized skills. Cross-sectional analysis of the associations between GAS ratings from an independent observer were correlated against teacher and parent ratings of IEP progress at the end of the school year and with standardized measures of the Behavior Assessment System for Children and Vineland Adaptive Behavior Scales (VABS). GAS scores were associated with parent and teacher ratings, including the VABS.

A Pilot Randomized Controlled Trial of a Daily Living Skills Intervention for Adolescents with Autism.

Adolescents with autism spectrum disorder (ASD) without an intellectual disability have daily living skills (DLS) impairments. An initial feasibility pilot of Surviving and Thriving in the Real World (STRW), a group intervention that targets DLS, demonstrated significant improvements. A pilot RCT of STRW was conducted to extend these findings. Twelve adolescents with ASD were randomized to the treatment or waitlist groups. The treatment group had significant DLS improvements on the Vineland Adaptive Behavior Scales, 3rd Edition and the DLS goal attainment scale. Four adolescents from the waitlist crossed over and completed STRW. Entire sample analyses with 10 participants demonstrated large DLS gains. Results provide further evidence of the efficacy of STRW for closing the gap between DLS and chronological age.

Socially distanced teaching: The mental health impact of the COVID-19 pandemic on special education teachers.

Little is known about the impact of the COVID-19 pandemic on special education teachers. Of 468 surveyed across the United States, 38.4% met clinical criteria for generalized anxiety disorder, a rate 12.4 times greater than the U.S. population, and 37.6% for major depressive disorder, a rate 5.6 times greater than the population. Race/ethnicity, gender, or school funding was not related to mental health. The impact of the pandemic was moderate to extreme on stress (91%), depression (58%), anxiety (76%), and emotional exhaustion (83%).

Implementation Fidelity and Common Elements of High Quality Teaching Sequences for Students with Autism Spectrum Disorder in COMPASS.

BACKGROUND: Evidence-based educational instruction includes teaching elements common across different approaches as well as specific elements of the chosen evidence-based practice. We were interested in evaluating the use and impact of common elements of teaching. Specifically, we adopted a model of elements of high quality teaching sequences and developed and tested an instructional quality index to capture evidence-based features within teaching sequences (Grisham-Brown & Ruble, 2014). METHOD: The current investigation examined 29 special education teachers who received a consultation intervention called the Collaborative Model for Promoting Competence and Success (COMPASS; Ruble, Dalrymple & McGrew, 2012) that results in personalized teaching plans for young students with ASD and embeds elements of evidence-based teacher coaching of self-reflection and performance-based feedback. We analyzed the teaching plans to understand which of the common elements were present, and if teachers demonstrated improved performance after coaching. RESULTS: Analysis of the use of common elements during the first and fourth coaching session demonstrated that all teachers showed improvement. Most importantly, the use of common elements correlated with student goal attainment outcomes. CONCLUSIONS: These results suggest that common elements of teaching sequences which we view as core features of teaching quality, can be improved as a result of coaching, and most importantly, are associated with students' educational outcomes.

Predicting the Outcomes of Parents of Transition-Age Youth or Young Adults with ASD.

The transition outcomes for individuals with autism spectrum disorder (ASD) and their families are less than desirable. A survey of parent stressors, resources, coping/appraisals, and adaptation to transition was completed by 226 parents. The mediating mechanisms between stressors and parent outcomes were identified. At the indicator level, three stressors (i.e., autism severity, mental health crisis/challenging behaviors, and filial obligation), four resources (i.e., general social support, transition planning quality, parent-teacher alliance, and parenting efficacy), and three coping styles (i.e., problem-focused coping, avoidance-focused coping, and optimism) predicted parents' outcomes (i.e., burden, transition experience, subjective health, and quality of life). At the structural level, optimism, emotion-coping strategies, and resources mediated the relationships between stressors and parental outcomes. Research and practical applications are discussed.

Stakeholder perspectives on transition planning, implementation, and outcomes for students with autism spectrum disorder.

LAY ABSTRACT: Little is known about factors impacting poor post-school outcomes for transition-age students with autism spectrum disorder. Guided by an implementation science framework that takes into account the multiple factors that influence transition outcomes, we sought to better understand the interdependent impacts of policy, organizational, provider, and individual factors that shape the transition planning process in schools, and the subsequent process through which transition plans are implemented as youth with autism spectrum disorder access services and gain employment after school. We conducted focus groups with individuals with autism spectrum disorder, parents, classroom teachers, school administrators, adult service providers, and state policymakers (10 groups, N = 40). Participants described how core tenets of the individualized education planning process were not reliably implemented: planning was described by inappropriate goal-setting, ineffective communication, and inadequate involvement of all decision-makers needed to inform planning. After school, youth struggled to access the services specified in their transition plans due to inadequate planning, overburdened services, and insufficient accountability for adult service providers. Finally, a failure to include appropriate skill-building and insufficient interagency and community relationships limited efforts to gain and maintain employment. Diverse stakeholder perspectives illuminate the need for implementation efforts to target the provider, organizational, and policy levels to improve transition outcomes for individuals with autism spectrum disorder.

Access to Autism Spectrum Disorder Services for Rural Appalachian Citizens.

Background: Low-resource rural communities face significant challenges regarding availability and adequacy of evidence-based services. Purposes: With respect to accessing evidence-based services for Autism Spectrum Disorder (ASD), this brief report summarizes needs of rural citizens in the South-Central Appalachian region, an area notable for persistent health disparities. Methods: A mixed-methods approach was used to collect quantitative and qualitative data during focus groups with 33 service providers and 15 caregivers of children with ASD in rural southwest Virginia. Results: Results supported the barriers of availability and affordability of ASD services in this region, especially relating to the need for more ASD-trained providers, better coordination and navigation of services, and addition of programs to assist with family financial and emotional stressors. Results also suggested cultural attitudes related to autonomy and trust towards outside professionals that may prevent families from engaging in treatment. Implications: Relevant policy recommendations are discussed related to provider incentives, insurance coverage, and telehealth. Integration of autism services into already existing systems and multicultural sensitivity of providers are also implicated.

A Preliminary Study of Parent Activation, Parent-Teacher Alliance, Transition Planning Quality, and IEP and Postsecondary Goal Attainment of Students with ASD.

The school, student and family factors underlying poor postsecondary outcomes of students with autism spectrum disorder (ASD) are not well understood. The potential impact of school [e.g., transition planning quality (TPQ)], family (e.g., parent activation), and student factors (e.g., adaptive functioning) and their interaction (e.g., parent-teacher alliance) on student outcomes were examined. Student IQ and adaptive behavior, TPQ, and alliance correlated with IEP progress, with postsecondary goal attainment generally and with student participation in training/education, specifically. However, only parent activation and student externalizing behavior correlated with employment. Families and students, rather than school personnel, were the primary persons in charge and in control of the implementation of postsecondary plans and required help across multiple coaching sessions to implement plans fully.

Adapting COMPASS for youth with ASD to improve transition outcomes using implementation science.

Implementation science provides guidance on adapting existing evidence based practices (EBPs) by incorporating implementation concerns from the start. Focus-group methodology was used to understand barriers and facilitators of transition planning and implementation for students with autism spectrum disorder (ASD) who often experience disparate postsecondary outcomes compared to peers. Results were used to modify an evidence-based consultation intervention originally applied to young students with ASD, called the Collaborative Model for Promoting Competence and Success (COMPASS; Ruble, Dalrymple, & McGrew, 2012). Because consultation is a multilevel EBP, two existing implementation science frameworks were used to guide adaptation: the Framework for Evidence Based Implementation and Intervention Practices (Dunst & Trivette, 2012) and the Consolidated Framework for Implementation Research (Damschroder et al., 2009). The purpose of this article is to describe a process of adaptation of COMPASS that may be useful for other implementation science studies of consultation interventions, teacher acceptability, feasibility, and burden, and parent/student satisfaction with the adapted intervention. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Randomized Control Trial of COMPASS for Improving Transition Outcomes of Students with Autism Spectrum Disorder.

The postsecondary outcomes of individuals with autism spectrum disorder (ASD) are significantly worse than peers with other disabilities. One problem is the lack of empirically-supported transition planning interventions to guide services and help produce better outcomes. We applied an implementation science approach to adapt and modify an evidence-based consultation intervention originally tested with young children called the Collaborative Model for Promoting Competence and Success (COMPASS; Ruble et al., The collaborative model for promoting competence and success for students with ASD. Springer, New York, 2012a) and evaluate it for efficacy in a randomized controlled trial for transition-age youth. Results replicated findings with younger students with ASD that IEP outcomes were higher for COMPASS compared to the placebo control group (d = 2.1). Consultant fidelity was high and teacher adherence improved over time, replicating the importance of ongoing teacher coaching.

An empirical study of multidimensional fidelity of COMPASS consultation.

Consultation is essential to the daily practice of school psychologists (National Association of School Psychologist, 2010). Successful consultation requires fidelity at both the consultant (implementation) and consultee (intervention) levels. We applied a multidimensional, multilevel conception of fidelity (Dunst, Trivette, & Raab, 2013) to a consultative intervention called the Collaborative Model for Promoting Competence and Success (COMPASS) for students with autism. The study provided 3 main findings. First, multidimensional, multilevel fidelity is a stable construct and increases over time with consultation support. Second, mediation analyses revealed that implementation-level fidelity components had distant, indirect effects on student Individualized Education Program (IEP) outcomes. Third, 3 fidelity components correlated with IEP outcomes: teacher coaching responsiveness at the implementation level, and teacher quality of delivery and student responsiveness at the intervention levels. Implications and future directions are discussed. (PsycINFO Database Record

Preliminary efficacy of a daily living skills intervention for adolescents with high-functioning autism spectrum disorder.

Daily living skills deficits are strongly associated with poor adult outcomes for individuals with high-functioning autism spectrum disorder, and yet, there are no group interventions targeting daily living skills. Seven adolescents with autism spectrum disorder and their parents participated in a feasibility pilot of a 12-week manualized group treatment targeting specific daily living skills (i.e. morning routine, cooking, laundry, and money management). Outcomes included the Vineland Adaptive Behavior Scales, Second Edition (Vineland-II) age equivalence scores and four goal attainment scaling scores. Adolescents demonstrated significant improvement on two Vineland-II subdomains and on all goal attainment scaling scores at post-treatment and 6-month follow-up. The intervention has promise for improving critical daily living skills' deficits that affect independent living and employment. Limitations and implications for future studies are discussed.

COMPASS for Hope: Evaluating the Effectiveness of a Parent Training and Support Program for Children with ASD.

Despite the growing number of studies that demonstrate the importance of empowering parents with knowledge and skills to act as intervention agents for their children with autism spectrum disorder (ASD), there are limited examples of parent-mediated interventions that focus on problem behaviors. Additionally, access to ASD-trained clinicians and research supported delivery options for families in rural areas is severely limited. COMPASS for Hope (C-HOPE) is an 8-week parent intervention program that was developed with the option of telehealth or face-to-face delivery. Parents who received C-HOPE intervention reported a reduction in parenting stress and an increase in competence. Parents also reported significant reductions in child behavior problems, both when compared to pre-intervention levels and to a waitlist control condition.

Special Education Teachers' Perceptions and Intentions Toward Data Collection.

Although data-based decision making is an evidence-based practice, many special educators have difficulty applying the practice within daily routines. We applied the Theory of Planned Behavior (TPB) to understand the influences that promote or hinder early childhood special educators' intentions to collect data. We assessed three influences on behavioral intention to collect data derived from the TPB: (a) attitude toward collecting data, (b) social norms for collecting data, and (c) perceived behavioral control for collecting data. All three influences correlated positively with teachers' reported intention to collect data; however, only perceived behavioral control of barriers correlated positively with actual data collection. Additional measures of teacher self-efficacy and administrative support correlated positively with intention to collect data, but not with actual data collection behaviors. Perceived behavior control accounted for the most variance in actual data collection behavior. Implications of the findings for data collection practices in educational settings are discussed.