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Improving Transition to Adulthood for Students with Autism: A Randomized Controlled Trial of STEPS
Abstract
Emerging adulthood is a period of heightened risk for young people with autism spectrum disorder (ASD). Due in part to a lack of evidence-based services and supports during the transition to adulthood, many emerging adults fail to matriculate into postsecondary education or thrive in productive employment. The Stepped Transition in Education Program for Students with ASD (STEPS) was developed to address the psychosocial, transition-related needs of emerging adults with ASD. Adolescents and emerging adults (n = 59) with ASD were randomly assigned to either STEPS or transition as usual (TAU). Results indicate that STEPS is acceptable to young people with ASD and their parents and that it can be implemented with high fidelity. Among secondary school students, those who completed STEPS exhibited significantly greater gains in transition readiness from high school, and these gains were largely sustained after program completion. Among students enrolled in postsecondary education, STEPS resulted in increased levels of student adaptation to college relative to those in TAU. Programming to address ASD-related challenges can promote successful educational transitions.
... How is IDD characterised in the literature on mental health for young people with IDD during the post-school transition period? Most included articles (n = 20) focused on autism (Anderson & Butt, 2017;Bell et al., 2017;Bennett et al., 2018;Cheak-Zamora et al., 2015;Cribb et al., 2019;Di Rezze et al., 2023;Elias et al., 2023;Giarelli & Fisher, 2013;Hatfield et al., 2017Hatfield et al., , 2018Hughes et al., 2024;Hughes, Kirby, et al., 2023;Kirby et al., 2020;Lam et al., 2020;Lei et al., 2020;Pillay et al., 2022;Senland & Higgins-D'Alessandro, 2016;Tesfaye et al., 2023;White et al., 2021). Among these, four studies excluded participants with co-occurring ID or participants with intelligence quotients (IQs) below a certain score (Hatfield et al., 2017;Kirby et al., 2020;Pillay et al., 2022;Senland & Higgins-D'Alessandro, 2016;White et al., 2021). ...
... Most included articles (n = 20) focused on autism (Anderson & Butt, 2017;Bell et al., 2017;Bennett et al., 2018;Cheak-Zamora et al., 2015;Cribb et al., 2019;Di Rezze et al., 2023;Elias et al., 2023;Giarelli & Fisher, 2013;Hatfield et al., 2017Hatfield et al., , 2018Hughes et al., 2024;Hughes, Kirby, et al., 2023;Kirby et al., 2020;Lam et al., 2020;Lei et al., 2020;Pillay et al., 2022;Senland & Higgins-D'Alessandro, 2016;Tesfaye et al., 2023;White et al., 2021). Among these, four studies excluded participants with co-occurring ID or participants with intelligence quotients (IQs) below a certain score (Hatfield et al., 2017;Kirby et al., 2020;Pillay et al., 2022;Senland & Higgins-D'Alessandro, 2016;White et al., 2021). Four articles focused on intellectual disability (Forte et al., 2011;Young et al., 2016;, two focused on learning disability (Dubois et al., 2023;Thapa et al., 2023), and two on Foetal Alcohol Syndrome Disorder (Coons-Harding et al., 2019;Gault et al., 2023). ...
... Four articles focused on transition to higher education (Anderson & Butt, 2017;Bell et al., 2017;Elias et al., 2023;Lei et al., 2020) including preparing students for higher education, assessing what high schools and/or tertiary institutions can do to improve student transitions, or investigating worries about leaving high school and moving into higher education. Two articles concentrated on post-school transition programs (Hatfield et al., 2017;White et al., 2021), both of which were for youth with autism. Hatfield et al. (2017) assessed the effectiveness of an online transition planning program to improve transitions through career planning and self-determination. ...
... Actualmente, hay un interés notable en analizar la intersección entre algunas de estas variables y los niveles de autodeterminación (Kim, 2019;Morán et al., 2021). Existe un interés particular en explorar y comprender cómo los adultos con Trastorno del Espectro Autista (TEA) desarrollan comportamientos autodeterminados (McDonald et al., 2023;Morán et al., 2021;Webster et al., 2022;White et al., 2019). ...
... A pesar de esta tendencia al alza, si bien existen intervenciones prometedoras relacionadas con la autodeterminación en personas con discapacidad intelectual y otras discapacidades, hay menos investigación y desarrollo de propuestas de formación relacionadas con este concepto en adultos con TEA. Sin embargo, es importante que los adultos con TEA reciban formación en autodeterminación, ya que tienen más probabilidades de experimentar discriminación que sus pares neurotípicos o aquellos con otras discapacidades (Kim, 2019;White et al., 2019). Por ejemplo, algunos estudios han demostrado que los adultos con TEA tienen más dificultades para expresar sus preferencias (Morán et al., 2021), a menudo no reciben un apoyo adecuado para participar significativamente en actividades de interés (White et al., 2019), tienen redes sociales muy limitadas (Webster et al., 2022) y tienen más probabilidades de permanecer en entornos segregados (Kim, 2019). ...
... El comportamiento socialmente adaptativo implica participar en procesos cognitivos sociales (por ejemplo, habilidades para resolver problemas, planificar, tomar habilidades de autodeterminación en personas adultas con trastorno del espectro autista en el contexto chileno i. álvarez-aguado, v. vega, f. gonzález-carrasco, m. et al., 2016); en última instancia, habiendo desarrollado habilidades relacionadas con la autodeterminación. Específicamente, y debido a la naturaleza de sus dificultades, las personas con TEA podrían beneficiarse de la instrucción en habilidades relacionadas con la autodeterminación (Andrés-Gárriz, 2023;White et al., 2019). Además, existen estudios que sugieren que el hecho de ayudar a los jóvenes con TEA a comprender la relación entre las funciones ejecutivas y la autodeterminación puede contribuir a incrementar el desarrollo de comportamientos autodeterminados . ...
La autodeterminación es un constructo clave para garantizar el desarro-llo de habilidades que permitan a personas con Trastorno del Espectro Autista (TEA) tomar el control de sus vidas. Sin embargo, el estudio de habilidades relacionadas con la autodeterminación en adultos con TEA sigue siendo limitado. Esta investiga-ción busca examinar los niveles de autodeterminación de 189 adultos con TEA entre 30 y 75 años, así como los factores personales o ambientales relacionados con estos niveles. Los datos se recopilaron utilizando una escala ad hoc desarrollada a partir del Modelo Funcional de Autodeterminación. La mayoría de los participantes tienen un nivel bajo de autodeterminación, especialmente en lo que respecta a habilidades relacionadas con el empoderamiento. Factores como la edad, el tipo de apoyo o el nivel socioeconómico afectan estos niveles. También existe una asociación inversa entre el nivel de TEA y ciertas habilidades de autodeterminación. Adoptar un enfo-que integral que promueva la autodeterminación puede mejorar significativamente la calidad de vida de los adultos con TEA. Esto implica no solo identificar factores que influyen en la autodeterminación, sino también diseñar intervenciones que aborden las necesidades individuales y contextuales de cada persona con TEA.
... Actualmente, hay un interés notable en analizar la intersección entre algunas de estas variables y los niveles de autodeterminación (Kim, 2019;Morán et al., 2021). Existe un interés particular en explorar y comprender cómo los adultos con Trastorno del Espectro Autista (TEA) desarrollan comportamientos autodeterminados (McDonald et al., 2023;Morán et al., 2021;Webster et al., 2022;White et al., 2019). En adultos con TEA, la prevalencia establecida es de 11 por cada 1000 y se estima que está aumentando (Brugha et al., 2016). ...
... A pesar de esta tendencia al alza, si bien existen intervenciones prometedoras relacionadas con la autodeterminación en personas con discapacidad intelectual y otras discapacidades, hay menos investigación y desarrollo de propuestas de formación relacionadas con este concepto en adultos con TEA. Sin embargo, es importante que los adultos con TEA reciban formación en autodeterminación, ya que tienen más probabilidades de experimentar discriminación que sus pares neurotípicos o aquellos con otras discapacidades (Kim, 2019;White et al., 2019). Por ejemplo, algunos estudios han demostrado que los adultos con TEA tienen más dificultades para expresar sus preferencias (Morán et al., 2021), a menudo no reciben un apoyo adecuado para participar significativamente en actividades de interés (White et al., 2019), tienen redes sociales muy limitadas (Webster et al., 2022) y tienen más probabilidades de permanecer en entornos segregados (Kim, 2019). ...
... Sin embargo, es importante que los adultos con TEA reciban formación en autodeterminación, ya que tienen más probabilidades de experimentar discriminación que sus pares neurotípicos o aquellos con otras discapacidades (Kim, 2019;White et al., 2019). Por ejemplo, algunos estudios han demostrado que los adultos con TEA tienen más dificultades para expresar sus preferencias (Morán et al., 2021), a menudo no reciben un apoyo adecuado para participar significativamente en actividades de interés (White et al., 2019), tienen redes sociales muy limitadas (Webster et al., 2022) y tienen más probabilidades de permanecer en entornos segregados (Kim, 2019). Los adultos con TEA pueden ser más conscientes de sus diferencias con sus pares y pueden carecer de las habilidades adaptativas necesarias para lograr la independencia, lo que puede afectar negativamente su autoconcepto (Palmen et al., 2012). ...
La autodeterminación es un constructo clave para garantizar el desarrollo de habilidades que permitan a personas con Trastorno del Espectro Autista (TEA) tomar el control de sus vidas. Sin embargo, el estudio de habilidades relacionadas con la autodeterminación en adultos con TEA sigue siendo limitado. Esta investigación busca examinar los niveles de autodeterminación de 189 adultos con TEA entre 30 y 75 años, así como los factores personales o ambientales relacionados con estos niveles. Los datos se recopilaron utilizando una escala ad hoc desarrollada a partir del Modelo Funcional de Autodeterminación. La mayoría de los participantes tienen un nivel bajo de autodeterminación, especialmente en lo que respecta a habilidades relacionadas con el empoderamiento. Factores como la edad, el tipo de apoyo o el nivel socioeconómico afectan estos niveles. También existe una asociación inversa entre el nivel de TEA y ciertas habilidades de autodeterminación. Adoptar un enfoque integral que promueva la autodeterminación puede mejorar significativamente la calidad de vida de los adultos con TEA. Esto implica no solo identificar factores que influyen en la autodeterminación, sino también diseñar intervenciones que aborden las necesidades individuales y contextuales de cada persona con TEA.
... Regarding CHD, a Canadian study concluded that two nurse-led information sessions held with an interval of two months between them was effective in reducing the delay to adult care and improving CHD knowledge and self-management skills (94). The remaining studies have been conducted in adolescents with hemophilia (95), spina bifida (96), type 1 diabetes (97), autism spectrum disorders (98,99), and special care needs (100). In addition to previous RCTs, these studies found positive effects on knowledge of the condition (95) disease-related distress (97), transition readiness (98), social relationships and interactions (96,99), clinic attendance (97) and satisfaction with care or perceived quality of care (97,100). ...
... The remaining studies have been conducted in adolescents with hemophilia (95), spina bifida (96), type 1 diabetes (97), autism spectrum disorders (98,99), and special care needs (100). In addition to previous RCTs, these studies found positive effects on knowledge of the condition (95) disease-related distress (97), transition readiness (98), social relationships and interactions (96,99), clinic attendance (97) and satisfaction with care or perceived quality of care (97,100). Moreover, a systematic review including 43 studies that used quasi-experimental or pre-post designs (101) showed the positive effects of transitional care interventions on participation in care, patient-reported health, quality of life, self-management skills, mortality, satisfaction with care, and more appropriate use of healthcare resources (101). ...
... For process evaluations of transition programs, there have been no published studies assessing the process of delivering the program in terms of implementation or potential mechanisms of impact. However, one study has shown that transitional care can be delivered with high participant acceptability (98). A few studies have evaluated the experiences of participation in transition programs, concluding that these programs should be tailored for the individual patient and that their needs should guide the content of the program (107). ...
Transition programs have been developed for adolescents with chronic conditions and evaluated through randomized controlled trials. However, knowledge is lacking on what barriers and facilitators to implementation exist, how change is created, and the cost-effectiveness of these programs. The overall aim of this thesis was to perform a process evaluation and health economic analysis of the STEPSTONES transition program for adolescents with congenital heart disease in transition to adulthood and transfer to adult care. The methods used in this thesis were process evaluations (Studies I – III) and a health economic evaluation (Study IV). Mixed methods were used to design, collect, and analyze data according to the methodological guidance for process evaluation of complex interventions by Moore et al (2015). The findings showed that the transition program was implemented with high fidelity, although some components were more difficult to implement. Factors affecting the implementation process were the participants’ and healthcare professionals’ responsiveness and willingness to engage in the program, organizational factors, recruitment and retention, and the parents’ process of achieving balance between becoming a support system and managing their own information and support needs. Key change mechanisms were the opportunity to meet a transition coordinator trained in person-centered care and adolescent-friendly communication, the creation of a safe space that was built on confidentiality, a learning process starting from the adolescents’ needs, and goal setting beyond the heart defect. The health economic evaluations showed that the intervention group had higher costs due to receiving the transition program. No differences in health outcomes with the EQ-5D were observed in this study. The conclusion is that the transition program was largely implemented as it was intended. Implications from these findings are that transition programs have prerequisites for implementation but tailoring to other conditions and contexts needs to be taken into consideration. Knowledge is needed on the longitudinal impact of transition programs to provide decision makers with evidence on the future benefits of transition programs for adolescents with chronic conditions.
... The use of accommodations, such as additional examination time, or a quiet testing environment, is advised (Jansen et al., 2016). Next, autistic students must learn what to expect from academic life, how lectures work (Cai & Richdale, 2016;White et al., 2019), and, we add, especially the importance of test taking and resits (Chapter 3). Furthermore, support should help them fit in socially, learn to ask for help and make friends with staff and fellow students (Accardo, Kuder, & Woodruff, 2018). ...
... In our opinion, support structures in institutions should strive for the opposite: inclusion by promoting understanding and acceptance of autistic students by peers and staff (Sarrett, 2017). The support of the academic community will help autistic students to build relationships, increase their understanding of fellow students and academic staff, and gain confidence (White et al., 2019). ...
... Our findings on prediction patterns for autistic students' success may imply that the severity of autistic students' autism plays a part in their study progression and success. Following previous findings (White et al., 2019), we assume that the more severe autistic students' autism is, the more difficulties they encounter before and during their studies. Student wellbeing affects the quality of life of autistic students in higher education (Van Hees, Moyson, & Roeyers, 2015). ...
In this PhD thesis, we aimed to improve understanding of the study progression and success of autistic students in higher education by comparing them to students with other disabilities and students without disabilities. We studied their background and enrollment characteristics, whether barriers in progression existed, how and when possible barriers manifested themselves in their student journey, and how institutions should address these issues. We found autistic students to be different from their peers but not worse as expected based on existing findings. We expect we counterbalanced differences because we studied a large data set spanning seven cohorts and performed propensity score weighting.
Most characteristics of autistic students at enrollment were similar to those of other students, but they were older and more often male. They more often followed an irregular path to higher education than students without disabilities. They expected to study full time and spend no time on extracurricular activities or paid work. They expected to need more support and were at a higher risk of comorbidity than students with other disabilities. We found no difficulties with participation in preparatory activities. Over the first bachelor year, the grade point averages (GPAs) of autistic students were most similar to the GPAs of students without disabilities. Credit accumulation was generally similar except for one of seven periods, and dropout rates revealed no differences. The number of failed examinations and no-shows among autistic students was higher at the end of the first semester. Regarding progression and degree completion, we showed that most outcomes (GPAs, dropout rates, resits, credits, and degree completion) were similar in all three groups. Autistic students had more no-shows in the second year than their peers, which affected degree completion after three years.
Our analysis of student success prediction clarified what factors predicted their success or lack thereof for each year in their bachelor program. For first-year success, study choice issues were the most important predictors (parallel programs and application timing). Issues with participation in pre-education (absence of grades in pre-educational records) and delays at the beginning of autistic students’ studies (reflected in age) were the most influential predictors of second-year success and delays in the second and final year of their bachelor program. Additionally, academic performance (average grades) was the strongest predictor of degree completion within three years.
Our research contributes to increasing equality of opportunities and the development of support in higher education in three ways. First, it provides insights into the extent to which higher education serves the equality of autistic students. Second, it clarifies which differences higher education must accommodate to support the success of autistic students during their student journey. Finally, we used the insights into autistic students’ success to develop a stepped, personalized approach to support their diverse needs and talents, which can be applied using existing offerings.
... Despite the consistent findings that ASD college students have difficulty with daily living skills that are essential for achieving functional independence as emerging adults, the existing literature is minimally focused on these skills as targets for intervention. When daily living skills are included in the intervention training, they are not a focus of the intervention (Capriola-Hall et al., 2020;Hillier et al., 2018;Lucas & James, 2018;Rando et al., 2016;Schindler et al., 2015;Weiss & Rohland, 2015;White et al., 2019;White, Richey, et al., 2016). The Connections intervention described above dedicated a week of training to discussing and improving time management skills (Hillier et al., 2018). ...
... Many of these social skills interventions target improvements in social communication (Ashbaugh et al., 2017;Capriola-Hall et al., 2020;Lucas & James, 2018;Rando et al., 2016;Schindler et al., 2015;Weiss & Rohland, 2015;White et al., 2019). For instance, the Communication Coaching Program described above was largely focused on training social communication skills (Weiss & Rohland, 2015). ...
... Some interventions also provide structured social activities so that ASD students could observe and practice learned skills (Ashbaugh et al., 2017;Capriola-Hall et al., 2020;Koegel et al., 2013;White et al., 2019;White, Richey, et al., 2016). Ashbaugh et al. (2017) developed and tested a social skills intervention for ASD college students that was mediated by peer mentors who modeled social behavior in real social settings. ...
Autistic individuals often struggle to successfully navigate emerging adulthood (EA). College is an increasingly common context in which individuals learn and hone the necessary skills for adulthood. The goal of this paper is to systematically review and assess the existing research on college as a context of EA development in autistic individuals, particularly in terms of understanding whether and how this context might be critically different for those who are typically developing or developing with other disabilities. Our findings indicate that ASD college students report feeling prepared academically, but exhibit weaknesses in daily living and social skills. Interventions largely focus on social skills, and rarely evaluate outcomes relevant to college success or longer-term emerging adulthood independence. We conclude with hypotheses and recommendations for future work that are essential for understanding and supporting ASD students as they navigate potentially unique challenges in college and their transition to independence during EA.
... Range= 16-25 years) enrolled in a randomized controlled trial (RCT). The experimental intervention was a transition support program for secondary or postsecondary students interested in pursuing higher education (White et al., 2021). For the trial, participants either had to have autism listed as an educational classification in their individualized education plans, or an ASD diagnosis was confirmed by a research-reliable administration of the ADOS-2 (Lord et al., 2012). ...
... The majority of the sample identified as White (86 %) and Male (80 %). See (White et al., 2021) for further details on the RCT and exclusion criteria. Recruitment occurred in a southeastern state in both rural and small city/suburban settings, including efforts to recruit through local school districts and two-and four-year postsecondary programs. ...
Background:
Adolescents and young adults with autism spectrum disorder (ASD) are prone to experience co-occurring mental health conditions such as mood or anxiety disorders, as well as impairments in emotion regulation and executive functioning. However, little research has examined inter-relationships among these constructs, despite evidence of additional stressors and increased risk of internalizing disorders at this age, relative to non-autistic individuals. If either emotion regulation or executive functioning are shown to have patterns of association with mental health, this can inform mechanism-based intervention.
Method:
Fifty-seven autistic adolescents and adults (16-25 years) with ASD in a transition intervention completed questionnaires and clinician-administered measures at baseline. Analyses assessed whether executive functioning impairment, above and beyond emotion regulation impairment, were associated with depression and anxiety symptoms.
Results:
ASD characteristics, emotion regulation, anxiety, and depression were significantly correlated. ASD characteristics was a significant contributor to depression and emotion regulation impairments were significant contributors to anxiety and depression. Findings indicated that inhibition difficulties did not uniquely contribute to depression or anxiety above emotion regulation impairment. Difficulties in cognitive flexibility were associated with depression above and beyond ASD characteristics, IQ, and emotion regulation, but not associated with anxiety.
Conclusions:
Although preliminary, findings suggest that inflexibility and regulatory impairment should be considered in depression remediation approaches. Improving ER, on the other hand, may have broader transdiagnostic impact across both mood and anxiety symptoms in ASD.
... A few existing transition support programs such as STEPS (White et al., 2017(White et al., , 2019 and the Summer Transition Program (Hotez, Shane-Simpson, & Obeid, 2018) appear promising, and may, increase the transition readiness and adjustment of autistic students and foster the social and self-advocacy skills they would need in HEI, respectively. Researchers agree however that more evidence-based services addressing the needs of autistic students who are transitioning to HEI should be developed (Anderson & Butt, 2017;Hotez et al., 2018;White et al., 2017). ...
... Only a handful of studies have developed and examined college transition programs for autistic students. Still, existing transition programs for autistic students have shown positive results in terms of reduced anxiety and loneliness and increased self-esteem (Hillier, Goldstein, & Murphy, 2018), smoother college adaptation (White et al., 2019), development of social connections (Rothman, Maldonado, & Rothman, 2008), better academic achievement, and successful completion of the first year (Shmulsky, Gobbo, & Donahue, 2015). Students' appreciation of transition programs shown in this study adds more evidence supporting the importance of structured transition programs in autistic students' transition to HEI. ...
Background
Only a limited number of studies have specifically examined autistic undergraduate students’ perspectives on transition. Positive experiences during the initial transition from high school to college lead to long-term success in college.
Method
This study examined the transition and adjustment experiences of 27 autistic undergraduate students attending higher education institutions (HEIs) in the United States. Semi-structured interviews were analyzed using qualitative content analysis.
Results
The majority (66.7 %) of participants described the transition experience in negative terms. They also reported that geographical proximity to home and family support, social relationships, transition programs, structural changes from their high school experiences, and logistic difficulties were important aspects of their transition experiences during the first few months of HEI. All participants indicated they felt adjusted to college life at the time of the interview, and adjustment was facilitated by familiarity with campus routines, academic achievement, and positive social experiences.
Conclusions
Themes associated with autistic students’ transition and adjustment experiences should be followed-up in future quantitative research. Careful transition planning that informs autistic students about expectations associated with HEI, familiarizes them with college life, helps them gain practical skills needed in colleges (e.g., transportation), and helps them find a balance between parental support and independence is needed to support autistic students through transition and adjustment.
... These findings suggest that while opportunities at home and school exist for students, they may need more support in skills surrounding explicit instruction in self-determination or activities that promote self-determination, emphasizing school-based supports. To date, one intervention incorporates explicit self-determination instruction in autistic youth without co-occurring ID ages 16-25 (White et al., 2017(White et al., , 2019. The STEPS program incorporates an explicit focus on self-determination through cognitive-behavioral strategies (White et al., 2017). ...
... The STEPS program incorporates an explicit focus on self-determination through cognitive-behavioral strategies (White et al., 2017). Results showed that students with higher self-determination levels at baseline predicted increases in college adjustment intervention gains (White et al., 2019). These findings were preliminary due to small sample sizes and did not demonstrate a change in selfdetermination over time; thus, more research is needed to examine self-determination interventions for transition-aged youth on the autism spectrum. ...
Self-determination refers to an individual's capacity and opportunities to act as a causal agent in their own lives to make choices, decisions, and set goals. The current study examined self- and parent-reports of the AIR Self-Determination Scale in transition-aged autistic youth (Based on stakeholder preferences, we use identity-first(autistic) or neutral language (on the autism spectrum) (Bottema-Beutel in JAMA 3:18–29, 2020)). Autistic youth completed depression and executive function measures, and parents rated their child's social-communication and executive function difficulties. Despite differences between youth and parent reports, both youth and their parents reported lower self-determination skills (capacity) than opportunities to practice self-determined behaviors. Both depression and executive function skills were related to self-determination capacity, highlighting potential intervention targets for transition-aged youth to facilitate increased self-determination and potentially improved adult outcomes.
... We drew our data from the National Database for Autism Research (NDAR), an NIH-funded data repository, and from existing data of one of the authors (MC). We used data from three NDAR studies (including Rabany et al., 2019;White et al., 2019) in the current analyses (Table 1). The Institutional Review Board (IRB) at Marquette University waived approval due to the deidentified and archival nature of the NDAR data. ...
... Study detailsInformation in quotations is pulled directly from NDAR website or publications resulting from the studies where indicated(Rabany et al., 2019;White et al., 2019) *S.White (personal communication, February 15 and 28, 2021) ...
Emotion dysregulation is common among autistic people, yet few measures have received psychometric evaluation in this population. We examined the factor structure, reliability, and validity of a commonly-used measure of emotion dysregulation, the Difficulties with Emotion Regulation Scale (DERS), in a sample of 156 autistic adolescents and adults. Data were drawn from the NIH National Database for Autism Research (NDAR) and an author’s existing dataset. Results demonstrated that the factor structure generally conformed to the original 6-factor model, with modifications. Reliability analyses revealed good-to-excellent internal consistencies. Validity analyses indicated that the DERS was positively associated with measures of anxiety, depression, and alexithymia. Our findings provide preliminary evidence for the utility of the DERS in a small autistic sample, with minor modifications.
... Stepped Transition Program in Education for students who identify as autistic (STEPS) (White et al., 2017(White et al., , 2021 C.P = 2 (5.3%) Program for future job development (C.P = 2, 5.3%) Program to Promote Competitive, Responsible and Sustainable Companies (SCORE) (Dipeolu et al., 2014) C.P = 1 (2.6%) ...
The transition from high school to university is usually complex for every student, but especially for minority groups. This is mainly due to the need to create more inclusive universities. The objective of this study was to determine the variables that influence the transition from post-compulsory education to university for students identifying as autistic. A systematic review was performed of scientific articles about the transition from high school to university for these students. The databases used in the review were: EBSCOhost, SCOPUS and Web of Science. The final sample comprised 38 studies published between 2007 and 2023. The analysis followed an inductive process, in which the selected studies were subject to content analysis. The data were coded qualitatively. The extracted results were summarized in two tables based on their content, which fell into two categories: (1) non-academic and academic variables that pose a problem for proper transition and (2) academic and non-academic variables that can benefit the transition process. A wide variety of different variables influence the transition process, and it is important to know each person's life history in order to give them the most suitable educational response possible. K E Y W O R D S neurodiversity, students identifying as autistic, systematic review, transition, university, upper secondary Key Points • Students who identify as autistic are more and more commonly attending university. In order to ensure their right to higher education and to help them achieve academic and social success, universities must understand their strengths and weaknesses so that they may be given the help they may need. • It is essential to understand that these students' relationships with others and how they perform in social interactions. These people's relationships are very important in the transition from school, so the more we know about them, the better any transition. • One good way to prevent problems with transition and bring about a successful change to the university would be to use strategies such as (1) Plan the transition in advance. (2) Establish contact with university professionals and become familiar with the environment in advance. (3) Find out what adaptations each university offers, such as specialized support services, academic accommoda-tions and accessible facilities.
... Stepped Transition Program in Education for students who identify as autistic (STEPS) (White et al., 2017(White et al., , 2021 C.P = 2 (5.3%) Program for future job development (C.P = 2, 5.3%) Program to Promote Competitive, Responsible and Sustainable Companies (SCORE) (Dipeolu et al., 2014) C.P = 1 (2.6%) ...
The transition from high school to university is usually complex for every student, but especially for minority groups. This is mainly due to the need to create more inclusive universities. The objective of this study was to determine the variables that influence the transition from post‐compulsory education to university for students identifying as autistic. A systematic review was performed of scientific articles about the transition from high school to university for these students. The databases used in the review were: EBSCOhost, SCOPUS and Web of Science. The final sample comprised 38 studies published between 2007 and 2023. The analysis followed an inductive process, in which the selected studies were subject to content analysis. The data were coded qualitatively. The extracted results were summarized in two tables based on their content, which fell into two categories: (1) non‐academic and academic variables that pose a problem for proper transition and (2) academic and non‐academic variables that can benefit the transition process. A wide variety of different variables influence the transition process, and it is important to know each person's life history in order to give them the most suitable educational response possible.
... terms of "possession of skills needed for success in college" (p. 7; White et al., 2021), young adults in the Launching! program are encouraged to develop their own archetype of what it means to be an adult and the values associated with that archetype-in other words, what being an adult means to them. ...
Group therapy may help young adults with neurodevelopmental differences (NDDs; such as autism spectrum disorder [ASD] or attention deficit hyperactivity disorder [ADHD]) socialize and manage mental health difficulties such as anxiety and depression during the transition to adulthood (18-25 years old). Family members may also benefit from group therapy during this transition period. Despite this need, few group therapy programs in a virtual/telehealth format have been developed to help young adults with NDDs and their families during the transition to adulthood. The present study sought to provide initial feasibility and acceptability data for a parallel young adult and family member group treatment program for young adults with NDDs transitioning to adulthood. Launching! to adulthood is an 8-week program utilizing evidence-based interventions to reduce distress and support the transition to independence for young adults with NDDs and their family members. Measures of well-being were collected pre- and post-intervention. Brief qualitative interviews were conducted post-intervention. From our pilot study, we found that the Launching! program was acceptable and feasible for both family members and young adults, with high ratings of satisfaction. Three themes were shared by young adults and family members, including gaining group connection and support from others in a similar life circumstance, learning the importance of self-care, and gaining new skills. Barriers to attendance included work conflicts and internet difficulties. This pilot trial of the Launching! program is novel in that few existing therapies have addressed challenges of the transition to adulthood for individuals with NDDs. Launching! has the potential to help young adults with NDDs prepare for postsecondary goals and may be utilized by businesses to support employees with NDDs.
... Given that students with autism are enrolling in postsecondary educational institutions at a growing rate (White et al., 2019), it has become increasingly important to understand how postsecondary institutions can better support them in both in-person and online learning environments. As a result of the COVID-19 pandemic, the education of most postsecondary students, including students with autism, abruptly migrated from in-person to online (i.e., emergency remote instruction) or a combination of both (i.e., hybrid learning). ...
Autism spectrum disorder (ASD) is a neurodevelopmental disorder that is often characterized in existing literature by deficits in social skills and communication. Due to COVID-19, a new issue has presented itself for many students—learning effectively in online education. Despite evidence suggesting many college students
with autism prefer online courses, research specifically investigating the challenges these students face in emergency remote instruction is limited. Using a virtually adapted nominal group technique (NGT), this project examined the challenges students with and without autism face in emergency remote and hybrid postsecondary education and inquired about resources available to them. Themes such as struggling to form relationships, poor communication, and a need for increased accessibility emerged from the participants with (n = 8) and without (n = 11) autism. Ultimately, these findings highlight challenges that postsecondary students with and without autism are facing in emergency remote instruction and supports that would be helpful in these educational experiences.
... Additionally, the attitudinal environment has been identified as a key aspect for support efficacy, with positive attitudes leading to successful supports (Austin and Peña, 2017) and negative attitudes, misinformation or lack of knowledge leading to the breakdown of supports (Ashby and Causton-Theoharis, 2012;Hassenfeldt et al., 2019;Bailey et al., 2020;Anderson et al., 2020b). Some emergent research has focused on how to destigmatize autism within the broader PS campus through preliminary initiatives focused on university faculty, staff and peers (Gillespie-Lynch et al., 2015;Cai and Richdale, 2016;Davidovitch et al., 2019;Anderson, 2021;Bolourian et al., 2021;Dickter and Burk, 2021;Gillespie-Lynch et al., 2021;White et al., 2021), with varying results. A common thread in the literature is a need for greater understanding and acceptance of autism in the PS campus environment generally and in connection to its direct impact of the efficacy of supports. ...
Given the demand to better address the principles of equity, diversity, inclusion, and accessibility in higher education, research into both barriers and promising practices to support autistic students on post-secondary campuses has advanced significantly in the last decade. The objective of this scoping review is to identify, map, and characterize literature that enumerates and describes supports for autistic post-secondary students. This scoping review was limited to peer-reviewed research published between January 2012 and May 2022, in these databases: Web of Science, PsycINFO, Medline, EMBASE, ERIC, Social Work Abstracts, Social Services Abstracts, and EMCARE. The review aligns to Joanna Briggs Institute methodology for scoping reviews and includes consultation with an expert panel made up of the Autistic Community Partners–four autistic individuals with postsecondary experience who acted as co-researchers. Literature on creating accessible campuses were mapped in three ways: (1) through the four domains of the PASS Taxonomy; (2) ten support categories characterizing types of supports, and (3) nine emergent themes, based on autistic experiences on support and campus navigation, were inductively and iteratively coded throughout process. This review summarizes both areas that have been researched and under-studied areas in the literature that act as contributors or challenges for autistic students on postsecondary campuses. It was also the first scoping review, to our knowledge, to integrate lived experience within the methods and results analysis to describe the current state of the evidence on post-secondary campuses. Mapping the literature in known and emerging categories indicated that broad categories of support are experienced variably by autistic students. Findings provide multiple avenues for future research.
... Besides its function in the reproductive system, oxytocin has many neural effects in the central nervous system, especially the hypothalamus and amygdala. It also affects neurons' excitation/inhibition balance and is associated with learning and memory [34]. Cognition flexibility is needed in other cognitive development, such as transitioning to adulthood. ...
Cognitive impairment is among the most challenging characteristics of autism spectrum disorder (ASD). Although ASD is one of the common neurodevelopmental disorders, we are still behind in diagnosing and treating cognitive impairment in ASD. Cognitive impairment in ASD varies, meaning it could be at the sensory perception level to cognitive processing, learning, and memory. There are no diagnostic criteria for cognitive impairment that are specific to ASD. The leading causes of cognitive impairment in ASD could be neurological, immune, and gastrointestinal dysfunction. Immune dysfunction might lead to neuroinflammation, affecting neural connectivity, glutamate/gamma-aminobutyric acid (GABA) balance, and plasticity. The gut-brain axes are essential in the developing brain. Special retinal changes have recently been detected in ASD, which need clinical investigation to find their possible role in early diagnosis. Early intervention is crucial for ASD cognitive dysfunction. Due to the heterogeneity of the disease, the clinical manifestation of ASD makes it difficult for clinicians to develop gold-standard diagnostic and therapeutic criteria. We suggest a triad for diagnosis, which includes clinical tests for immune and gastrointestinal dysfunction biomarkers, clinical examination for the retina, and an objective neurocognitive evaluation for ASD, and to develop a treatment strategy involving these three aspects. Developing clear treatment criteria for cognitive impairment for ASD would improve the quality of life of ASD people and their caregivers and would delay or prevent dementia-related disorders in ASD people.
... It displays what our program committee currently considers useful at this 'state of the art' of this ever evolving and expanding field. We are aware that, as we write this article, innovations are ongoing and other promising programs (e.g., White et al., 2019;Oshima et al., 2022;Shaffer et al., 2023) are upcoming. We therefore primarily give this overview to increase awareness in all stakeholders considering the abundant field of support and services already available. ...
Getting ‘stuck’, literally and figuratively, is a common experience for autistic people. Literally ‘stuck’ means exhibiting limited response initiation due to immobility with tense muscles and inability to move. Figuratively ‘stuck’ means loneliness, passivity or captivity in activities that do not offer long-term satisfaction. To further conceptualize this complex phenomenon of limited response initiation in autistic individuals, we performed qualitative interviews and focus groups with autistic people and their family members, followed by brainstorm sessions and a Delphi study with input from a larger panel of experts from multiple backgrounds. We aimed to co-create the outline of an integrative approach to support autistic people in moving away from this ‘stuck state’ to more flexible, limber ‘supple states’ in order to live freer, more meaningful, satisfying and peaceful lives. Over time, in interaction with all participants, our shared insight grew. Based on this, we here stipulate a conceptual framework, in which the described ‘stuck state’ at the micro-level of the muscles/behavior of one individual, probably is caused by feeling/being ‘stuck’ or ‘cramped’ at several overarching (i.e., meso and macro) levels. For instance, stuck in relationships with unhealthy dynamics, stuck at home creating short-term calm, trance-like states (e.g., gaming), stuck at an educational level that might fit the individuals’ current social–emotional state rather than their potential cognitive level, stuck in a job that pays the bills but does not feel meaningful, nor contributes to a satisfying life with opportunities for personal development. Stuck in a mental/public health care system where ever ongoing changes in policies hinder sustained support to suit care-needs. Stuck in a regulated societal system making it likely to repeatedly get stuck. Is this phenomenon specific to autism? Formally we have only conducted interviews with this population, but in another smaller, related project we also spoke to people from the general population with careers that are considered successful in the general society. These people actually voiced similar experiences. Therefore, we hypothesize that this numbing state of being or feeling ‘stuck’ may be a prevalent phenomenon that needs to be addressed. In this article, we discuss several types of interventive approaches (i.e., language-based talking therapies, affective experiential expressive therapies, physical therapies and systemic therapies), prevention as well as intervention programs, directed at different primary stakeholders, that can complement and enrich each other in an integrative policy, that leads to tailor-made, personalized trajectories of interdisciplinary support to enable people to live satisfying, meaningful, dignified and peaceful lives.
... Several literature reviews indicate that autistic youth have low rates of employment, postsecondary educational completion, and independent living (Lee et al., 2018;Nuske et al., 2019;Shattuck et al., 2011;Wehman et al., 2014;Westbrook et al., 2015) and large-scale randomized control trials examining the effectiveness of transition intervention programs for autistic students are lacking (Klinger & Dudley, 2020). There are, however, several pilot studies that demonstrate promising findings related to transition intervention programs (DaWalt et al., 2018;Hillier et al., 2018;Klinger & Dudley, 2020;Oswald et al., 2018;Ruble et al., 2019;Taylor et al., 2017;White et al., 2021). While these programs differ slightly (e.g., postsecondary versus secondary settings, individual versus group modalities, inperson versus virtual meetings), they provide promising future directions. ...
The coronavirus (COVID-19) pandemic has caused widespread disturbances in many human and social service programs. Several studies have examined special education programming adaptations since the onset of the pandemic; however, there has yet to be documentation of pandemic-related changes to transition programming and the impact of these changes for autistic youth. The purpose of this qualitative study was to examine changes in transition programming for autistic youth amid the changing educational landscape. We conducted 12 interviews with caregivers (n = 5) and school providers (n = 7) about transition programming for autistic youth and the COVID-19 impact to these services. The pandemic had positive and negative effects on many aspects of transition programming, including student-focused planning, student development, interagency and interdisciplinary collaboration, family involvement, and program structure and attributes. Elucidation of the ways that the COVID-19 pandemic impacted transition programming from the perspectives of multiple stakeholders has important implications for school personnel and can help to inform the future directions for the field of transition programming research.
... Hatfield and colleagues [49] proposed an online transition planning program supporting autistic adolescents to prepare for leaving school and successfully exploring the feasibility and viability of the schools' programs. White and colleagues [50] and Jonsson and colleagues [51] developed two programs to address the psychosocial and transition-related needs of emerging autistic adults and to empower young adults with ASD to make progress within significant life domains (i.e., work, education, finance, housing/household management, health, leisure/participation in society, and relationships/social network). Autistic youth enrolled in both programs were better prepared to transition out of high school, and these gains were sustained mainly after the programs' completion. ...
An integrated plan within a defined care pathway for the diagnosis, continuative interventions, and periodic redefinition of care of autistic people is essential for better outcomes. Challenges include delivering services across all domains or life stages and effective coordination between health/social care providers and services. Further, in the ‘real world’, service provision varies greatly, and in many settings is significantly weighted towards diagnosis and children’s services rather than treatment and support or adult care. This study aims to identify existing care pathways for Autism Spectrum Disorder (ASD) from referral to care management after diagnosis. The study reviewed the international literature in PubMed and PsycInfo databases and collected information on care for autistic individuals from the Autism Spectrum Disorders in Europe (ASDEU) project partners. The study found that published data mainly focused on specific components of care pathways rather than an integrated and coordinated plan of care and legislative indications. They should be aimed at facilitating access to the services for support and the inclusiveness of autistic individuals. Given the need for care addressing the complex and heterogeneous nature of ASD, effective coordination between different health/social care providers and services is essential. It is also suggested that research priority should be given to the identification of an integrated care pathway ‘model’ centered around case management, individualization, facilitation, support, continuous training and updating, and quality management.
... Dengan demikian, penting untuk mengkaji lebih lanjut peran Subjective Norm di antara penjaja makanan karena juga bisa menjadi bagian dari efek kausal terhadap niat untuk menggunakan EFFP (Ham & Jeger, 2015). Selain itu, telah dicatat bahwa pengaruh pelanggan (Albrecht et al., 2017), pengaruh media (Husin et al., 2016), dan kewajiban moral juga penting untuk memeriksa masalah secara menyeluruh (White et al., 2021) ...
Robo advisor merupakan penasihat keuangan yang salah satunya ada pada bareksa untuk membantu pengguna untuk melakukan alokasi aset saham, obligasi dan investasi lainnya yang telah disesuaikan dengan profil risiko terhadap masing-masing investor. Tujuan dari perancangan penelitian ini adalah untuk mengetahui sejauh mana kepahaman masyarakat di kota Batam terhadap robo advisor dalam melakukan suatu kegiatan investasi. Teknik pengambilan sampel yang dipakai adalah non-probability sampling dengan metode purposive sampling. Kriteria dalam penelitian ini adalah responden yang pernah/sedang menggunakan robo advisor sehingga memperoleh 300 data sampel. Hasil penelitian menunjukkan bahwa attitude tidak berpengaruh signifikan positif terhadap intention to use, perceived ease of use berpengaruh signifikan positif terhadap intention to use, perceived usefulness berpengaruh signifikan positif terhadap intention to use, subjective norm (external influce) berpengaruh signifikan positif terhadap intention to use, dan subjective norm (internal influce) tidak berpengaruh signifikan positif terhadap intention to use.
... Dans cet article, nous avons proposé une analyse écosystémique de cette transition en nous appuyant sur le modèle développé par Bronfenbrenner (1979Bronfenbrenner ( , 2005, permettant d'appréhender en quoi les caractéristiques des jeunes avec un TSA, des microsystèmes dans lesquels ils évoluent mais plus largement des politiques publiques et des attitudes et représentations sociales associées à l'autisme peuvent constituer autant d'obstacles dans la transition vers l'enseignement supérieur. Nous avons aussi rappelé que plus de deux décennies de recherche ont permis d'établir que soutenir l'autodétermination constitue une pratique fondée sur des preuves qui permet d'améliorer la transition vers l'enseignement supérieur chez les jeunes avec un TSA (Carter et al., 2013;Wehmeyer et al., 2012;White et al., 2017White et al., , 2021, tout particulièrement dans le cadre de programmes de planification de la transition (e.g., Hatfield et al., 2016Hatfield et al., , 2017. afin d'appréhender les obstacles qui n'ont pas pu être dépassés. ...
Adolescents with autism spectrum disorder (ASD) without intellectual disabilities are at greater risk than other atypically developing young people of dropping out of school during the transition to higher education. In this article, we propose an ecological analysis of the transition to higher education for these young people with reference to Bronfenbrenner's ecosystemic theoretical model. We emphasise the central role of self-determination for young people with ASD in preparing for the transition from high school to higher education by pointing out the often noted lack of self-determination opportunities available to them. We present an example of a transition planning programme that aims to promote the self-determination of young people in the preparation phase of the transition, before discussing the research perspectives that should mobilise researchers in the years to come.
... As faculty support and habits of mind are found to be related (Hurtado & DeAngelo, 2012), it is important that students receive early, pre-college exposure to habits of mind and professors examine ways to integrate skills related to habits of mind into their curriculum. Transition programs prior to and upon entering college that fosters skills related to college-readiness and habits of mind can support autistic students' college experiences (White et al., 2021). Additionally, providing institution-wide opportunities to start building relationships with faculty, staff, and peers, as well as to familiarize students with available campus-facilitated activities prior to entering college through various modalities (e.g., orientations, school visits, summer camps, online meetings) can be especially beneficial for autistic students. ...
This study examines autistic and non-autistic college students’ experiences of discrimination and harassment and identifies protective and risk factors. A nationwide survey was used to match autistic students (N = 290) and non-autistic students (N = 290) on co-occurring diagnoses and demographic characteristics. Multiple regression and interaction analysis revealed that faculty support was protective against discrimination and harassment regardless of autism status. Habits of mind was particularly protective for autistic students against harassment. Any student who engaged in school-facilitated events was more likely to experience discrimination and harassment, but the risk was heightened for autistic students. Findings highlight the importance of faculty support in fostering positive interpersonal experiences on campus, and demonstrate the need to address deeper college campus issues with respect to neurodiversity.
... They are also less likely to access community and leisure activities or spend time socialising (Orsmund, Shattuck, Cooper, et al., 2013). Access to transition planning support has been shown to benefit young people on the autistic spectrum (Hatfield et al., 2017;Wehmeyer, Palmer, Lee, et al., 2011;White, Smith, Miyazaki, et al., 2019). Despite this evidence, one review found that transition support is frequently poor quality, particularly in mainstream schools (Kraemer, Odom, Tomaszewski, et al., 2020). ...
Transitioning to adulthood presents particular difficulties for young people on the autistic spectrum. This review looks at the views of key stakeholders regarding the transition to adulthood and associated support, within the UK. Four databases were searched and of the 564 initial results, nine papers met the inclusion criteria. A framework synthesis approach was taken, using the biopsychosocial ecological model (Kranzler et al., 2020) (School Psychology, 35, 2020 and 419) to map the experiences of individuals on the autistic spectrum, their families and professionals. Data analysis was conducted deductively with findings highlighting the challenging experiences young people and their families face and systemic barriers to accessing and providing support. Facilitative factors are identified, indicating a need for more inter‐agency collaboration, inclusivity and individualisation of support. There was substantial interaction between the systems surrounding the child, indicating a complex and multi‐faceted impact on experience. Further support is provided for the applicability of ecosystemic models to the study of autism. Key policy suggestions and gaps in the research base are considered.
... Indeed, given that the transition to early adulthood can be particularly challenging for youths with ASD [80], booster sessions may be especially helpful to youths and their families as they navigate this transition. ...
Youths with autism spectrum disorder (ASD) often engage in aggressive and other disruptive behaviors that interfere with important aspects of their lives, such as family, friends, and school. Effective treatments are needed to address the wide variety of risk factors that contribute to disruptive behaviors in this population of youths. Multisystemic therapy (MST) is a comprehensive family- and community-based treatment approach that has been effective in reducing problem behaviors in other challenging clinical populations. In this chapter, we review the broad range of possible contributing factors for disruptive behaviors in youths with ASD and discuss how MST interventions can be adapted to address those factors. We also present a research framework and empirical findings related to the development and evaluation of the MST model for youths with ASD. Implications of those findings and future directions in our continued development of MST for ASD are discussed.
... Given the high prevalence of co-occurring mental health conditions [46] that often emerge in elementary and middle school years and persist if left untreated [47], research in this area is essential. Promising research on interventions targeting executive functioning [48], anxiety [49], social skills [50], and transition to adulthood [51] seek to adapt and test EBPs to address these areas in schools, though these have primarily been researcher implemented. Future research that prioritizes educator-or peerimplemented intervention is a crucial next step to address the social-emotional and other needs of autistic students. ...
Purpose of Review
The purpose of this review is to provide an update on the recent research (2016–2021) that evaluates the effectiveness of school-implemented interventions for students with autism (3–21 years old) from preschool to high school.
Recent Findings
Overall, the recent literature demonstrated that there are EBPs that help students with autism acquire a variety of skills across domains (academic, social communication). Though many educators and peers were able to achieve high-fidelity implementation, there remains variable fidelity of intervention use in some studies.
Summary
Though there is some evidence that educators and peers can successfully implement interventions, there are additional focal areas that are missing from the literature that are needed in schools (e.g., mental health, vocational). Future research should leverage implementation science approaches to support the use of proven efficacious interventions in schools.
Citation: Hart, F. G., Mendoza, R. R. (2023). The 2024 Student Research Symposium: Reflections and Recommendations. the Behavior Therapist, 47(7). https://mydigitalpublication.com/publication/?i=825946
In the 13th National Congress on Child and Adolescent Psychiatry, I presented on non-pharmacological interventions for autism in adults, based on current research. The congress, a collaboration with Mashhad University of Medical Science and the Iranian Academy of Child and Adolescence Psychiatry, was held April 23-26, 2024 in Mashhad, Iran. My talk also highlighted the importance of understanding and supporting neurodiversity and introduced interventions that align with this perspective, offering a fresh approach to adult autism care.
The population of autistic adults is growing at a pace not previously seen. Typically, therapy for autistic adults does not target symptoms of autism spectrum disorder alone. Clients instead often seek services for related problems or secondary mental health disorders. In this chapter, we provide an overview of psychotherapeutic approaches for three domains: transition to adulthood, mood and anxiety problems, and social impairment. Future research must address how to optimize the implementation of research-supported approaches to improve access to autistic clients.
In this chapter, suggestions are provided to optimize outcomes for students with autism spectrum disorder (ASD) as they transition from high school into adulthood. Evidence-based research, along with parent and student reports, suggests that planning, preparing, and involving stakeholders (including the student with ASD) are critical components for these students’ success. Ultimately, the aim of this chapter is to encourage persons who work with students with ASD to focus on individual support, emphasize independent decision-making, and assist students’ conceptualization of their future. This chapter concludes with available resources, such as service agencies and community partners available for students and their support providers.
Provision of medical care to adults with autism has been complicated for a host of reasons. These include issues of lack of research data, insufficient guidance on best practices and information on approaches to the person with ASD, problems with insurance, and others. The limited data available suggest potential increased risk for certain medical and mental health problems. Clearly, costs for good medical care are increased even at a time when insurance reimbursement is limited and education for individuals with ASD on getting quality care has been minimal.
As a result of these problems, medical care is often delivered in emergency department settings, and the absence of primary care providers can mean that conditions are overlooked at a time when they are most treatable. Available data suggest increased rates of morbidity in the ASD population. In this chapter, we outline some of the current obstacles and directions for future research and clinical service.
Colleges are enrolling more students who have been diagnosed with autism spectrum disorder (ASD), or who have the condition but have not been formally diagnosed, than ever before. Although research on the experience of autistic college students has increased exponentially in recent years, there are many unanswered questions related to best practices, evidence-based supports, and developmental trajectory. Autistic college students experience challenges primarily related to functional daily living skills and socioemotional health, more so than academic impediments. They also have more challenges related to co-occurring mental health problems, such as depression, relative to nonautistic students. In this chapter, we summarize the research on the needs and challenges experienced by this growing population, describe programs and services developed to address their needs, and offer suggestions to schools and families who wish to support these students.
Adaptive behavior encompasses a broad range of practical skills that are necessary for everyday self-sufficiency. In neurotypical development, these skills are naturally acquired and applied to daily contexts and routines as life demands each behavior. In autism, however, these behaviors often need to be explicitly taught, practiced, and generalized across contexts even for individuals who have strong cognitive, language, and academic abilities. In the absence of direct instruction, delays in adaptive functioning lead to poor adult outcomes in that autistic individuals fail to achieve levels of self-sufficiency in holding down jobs, living independently, having successful relationships, and otherwise feeling fulfilled. This is despite the fact that the majority of autistic adults currently have no cognitive or language impairments, and thus, they have the capacity to be more successful than research shows. All autistic individuals, regardless of levels of functioning, have the right to optimize their potential. For this reason, enhanced focus on fostering adaptive behavior is critical during the school-age years to ensure that adolescents and adults achieve success in life.
Importance
Youth with intellectual and developmental disabilities (I/DD) are more likely to be placed in foster care than other youth. Examining the clinical and sociodemographic characteristics of youth with I/DD in the foster care system is critical for identifying disparities and understanding service needs.
Objective
To produce a population-level analysis of youth with I/DD in foster care that examines differences in rates of foster care involvement based on race, ethnicity, age, and sex.
Design, Setting, and Participants
This cross-sectional study involved all individuals with I/DD 21 years and younger enrolled in Medicaid through foster care in 2016 via data from Transformed Medicaid Statistical Information System (T-MSIS) Analytic Files (TAF) for all 50 US states and Washington, DC. As a key insurer of I/DD services and foster care, Medicaid claims offer a timely population-level analysis. Youth with I/DD were grouped into diagnostic subgroups: autism spectrum disorder (ASD) only, intellectual disability only, or ASD and ID. The data analysis took place from July 2022 to September 2023.
Exposure
TAF data contain Medicaid enrollment information by month with a binary indicator of foster care involvement, and eligibility files identify race, ethnicity, age, and sex.
Main Outcomes and Measures
The period prevalence of foster care involvement was determined among I/DD youth by diagnostic subgroups using an intersectional approach across race, ethnicity, age, and sex. Logistic regression examined associations between risk for foster care involvement and race, ethnicity, age, and sex.
Results
A total of 39 143 youth with I/DD had foster care involvement in 2016. Black youth (adjusted odds ratio [aOR], 1.37; 95% CI, 1.28-1.47) and females (aOR, 1.18; 95% CI, 1.1-1.27) had increased likelihood for foster care involvement. The likelihood for foster care involvement increased with age in all groups relative to the age group 0 to 5 years old.
Conclusions and Relevance
This study found that among youth with I/DD, Black youth and females faced higher risk for foster care involvement, and the likelihood of foster care involvement increased with age. There is an urgent need for research that focuses on addressing system-level factors that drive increased risk. Understanding the specific health needs of Black and female youth with I/DD is critical to ensure the formation, implementation, and monitoring of equitable delivery of health services.
Background
Autistic young adults frequently experience challenges in their transition to adulthood. Despite the available research base describing isolated transition practices, efforts to document comprehensive programs combining multiple components in community settings are scant. This study aimed to explore stakeholders’ experience of a post-school transition program, including their perceived program components, processes, and impacts that contributed to the program success.
Method
We conducted individual qualitative interviews with 17 program stakeholders, including autistic students, parents, mentors, community collaborators, and program staff. Findings were used to create a logic model that describes how various program components and processes effect changes in autistic youths and their parents.
Results
Results revealed that the program values are focused on student-led participation, a strength-based approach, individualization and customization, and professional development. Program activities holistically fostered development in the autistic youth through processes of imparting career-related knowledge, facilitating ecologically relevant practice, and providing supportive peers and environment. Stakeholders described heightened sense of self-awareness, self-esteem, independence, social competence, and preparedness for the future in autistic young adults, while parents also gained the trust and confidence in fostering autonomy in their adult children.
Conclusions
Transition program that integrates multiple components and processes informed by the evidence-based literature can facilitate career construction and development in autistic youth. Program model developed based on stakeholders’ input can offer rich information about how a program works in a naturalistic context, which can support future program adaptaion and replication to meet the needs of diverse communities and settings.
This chapter provides an overview of evidence-based treatment practices for Autism Spectrum Disorder (ASD) across the lifespan and explores the diverse contexts in which these treatments can be effectively delivered. Our particular focus is on evidence-based practices which have been demonstrated through research to lead to positive outcomes for individuals with ASD. Key goals for treatment are identified across different stages of development including treatments aimed at developing early communication and play skills in toddlers, supporting academic participation and forming peer relationships later in childhood, building academic, social, and pre-vocational skills in adolescence, and enhancing independent living, employment, and financial management in adulthood. The importance of treatment delivery in natural environments and of caregiver and stakeholder involvement is described. Treatments that foster independence and promote quality of life for individuals with ASD by incorporating person-centered, strengths-based approaches for the development of meaningful skills are emphasized.KeywordsAutism Spectrum DisorderTreatmentEvidenced-basedApplied behavior analysisCognitive behavior therapyChildrenAdolescentsAdults
Importance:
Autism spectrum disorder (ASD), characterized by deficits in social communication and the presence of restricted, repetitive behaviors or interests, is a neurodevelopmental disorder affecting approximately 2.3% children aged 8 years in the US and approximately 2.2% of adults. This review summarizes evidence on the diagnosis and treatment of ASD.
Observations:
The estimated prevalence of ASD has been increasing in the US, from 1.1% in 2008 to 2.3% in 2018, which is likely associated with changes in diagnostic criteria, improved performance of screening and diagnostic tools, and increased public awareness. No biomarkers specific to the diagnosis of ASD have been identified. Common early signs and symptoms of ASD in a child's first 2 years of life include no response to name when called, no or limited use of gestures in communication, and lack of imaginative play. The criterion standard for the diagnosis of ASD is a comprehensive evaluation with a multidisciplinary team of clinicians and is based on semistructured direct observation of the child's behavior and semistructured caregiver interview focused on the individual's development and behaviors using standardized measures, such as the Autism Diagnostic Observation Schedule-Second Edition and the Autism Diagnostic Interview. These diagnostic measures have sensitivity of 91% and 80% and specificity of 76% and 72%, respectively. Compared with people without ASD, individuals with ASD have higher rates of depression (20% vs 7%), anxiety (11% vs 5%), sleep difficulties (13% vs 5%), and epilepsy (21% with co-occurring intellectual disability vs 0.8%). Intensive behavioral interventions, such as the Early Start Denver Model, are beneficial in children 5 years or younger for improvement in language, play, and social communication (small to medium effect size based on standardized mean difference). Pharmacotherapy is indicated for co-occurring psychiatric conditions, such as emotion dysregulation or attention-deficit/hyperactivity disorder. Risperidone and aripiprazole can improve irritability and aggression (standardized mean difference of 1.1, consistent with a large effect size) compared with placebo. Psychostimulants are effective for attention-deficit/hyperactivity disorder (standardized mean difference of 0.6, consistent with a moderate effect size) compared with placebo. These medications are associated with adverse effects including, most commonly, changes in appetite, weight, and sleep.
Conclusions and relevance:
ASD affects approximately 2.3% of children aged 8 years and approximately 2.2% of adults in the US. First-line therapy consists of behavioral interventions, while co-occurring psychiatric conditions, such as anxiety or aggression, may be treated with specific behavioral therapy or medication.
Neuropsykiatriset häiriöt vaikuttavat monin tavoin nuoren arjen toimintaan ja osallistumiseen. Uudenmuotoisessa moniammatillisessa Oma väylä -kuntoutuksessa autetaan nuorta hänen yksilöllisissä arjen haasteissaan, jotka liittyvät opiskelu-, työ-, koti- ja vapaa-ajan elämään. Kuntoutus sisältää ryhmä- ja yksilötapaamisia lähi- ja etäkontaktein sekä nuoren verkoston kanssa työskentelyä. Artikkeli perustuu meneillään olevaan Oma väylä -kuntoutuksen implementaatiotutkimukseen, joka on osa Kelan rekisteröitymismenettelyn kokeilua ja sen tutkimusta. Artikkelissa tarkastellaan Oma väylä -kuntoutuksen implementaatiota hyödyntäen Wierengan ja kumppaneiden (2013) viitekehystä siitä näkökulmasta, millaisia odotuksia nuorilla on kuntoutuksen toteutumisesta kuntoutuksen alkuvaiheessa ja miten uudenlaisen, moniammatillisen kuntoutusmuodon toteuttaminen on käynnistynyt palveluntuottajien näkökulmasta. Artikkelin käsitteellinen kehystys muodostuu implementaatiotutkimuksen viitekehyksestä, jonka valittuja determinantteja tarkastellaan (kuntoutukseen hakeutumista sekä kuntoutuksen toteuttamista hyvien, asiakaslähtöisen toiminnan edellytysten mukaisesti sekä kuntoutuksessa tärkeiksi koettuja sisältöjä). Vertailemme asiakkaiden ja palveluntuottajien näkemyksiä toisiinsa sekä asiakkaiden, joilla on eri diagnoosit (autismikirjon häiriö, aktiivisuuden ja tarkkaavuuden häiriö tai kumpikin näistä diagnooseista), näkemyksiä toisiinsa. Aineisto koostuu kuntoutuksen palveluntuottajille ja asiakkaille suunnatuista kyselyistä. Määrällinen kyselyaineisto analysoidaan kuvailevin tilastollisin menetelmin ja laadullinen aineisto (kyselyjen avoimet vastaukset) luokitellaan sisällönanalyysillä. Suurin osa nuorista oli tarvinnut apua kuntoutukseen hakeutumiseen ja hakemuslomakkeen täyttämiseen. Nuoret, joilla oli sekä aktiivisuuden ja tarkkaavuuden häiriö että autismikirjon häiriö, kokivat kuntoutukseen hakeutumisen useammin haastavaksi kuin nuoret, joilla oli ainoastaan toinen näistä diagnooseista. Sekä palveluntuottajat että nuoret itse, riippumatta diagnoosista, arvioivat tärkeiksi erilaiset asiakaslähtöistä ja asiakasta osallistavaa kuntoutusta kuvaavat elementit kuten nuoren osallistumisen itseään koskeviin päätöksiin ja tavoitteiden asettamiseen. Nuorten arvioissa tärkeistä kuntoutuksen sisällöistä oli enemmän variaatiota kuin palveluntuottajien arvioissa. Abstract The implementation of Oma Väylä rehabilitation assessed by young clients and service providers Neuropsychiatric disorders affect everyday life and participation in multiple ways. The new Oma Väylä rehabilitation offers support for young people in their individual challenges related to studies, work, and leisure activities. The Oma Väylä rehabilitation includes individual and group sessions as well as working with the client’s network. This article is based on the ongoing research on the implementation of Oma Väylä rehabilitation, which is a part of the Social Insurance Institution Kela’s registration trial for service providers and research thereof. In this article, we examine the implementation of the Oma Väylä rehabilitation from two different perspectives: First, the expectations young people have regarding their rehabilitation and, second, the views of service providers on the implementation of the new Oma Väylä rehabilitation. The implementation research framework forms the theoretical framework and defines the determinants examined in this article (applying for the rehabilitation, implementing rehabilitation according to client-centered principles, and the experienced meaningful contents of the rehabilitation). We compare the perspectives of both the clients and the service providers, in addition to which we look at the experiences of clients with different diagnoses (attention deficit hyperactivity disorder ADHD, autism spectrum disorder ASD, or a combination of both). The data consists of survey data from questionnaires targeted to the service providers and clients. Quantitative data are analyzed by descriptive statistical analysis and qualitative data by content analysis. A majority of the young people needed help with applying to rehabilitation and filling out the application form. Young people diagnosed with both ADHD and ASD found applying to rehabilitation more challenging than those who only had one of the two diagnoses. Both the service providers and the young people found the client-centered and participatory elements, such as shared decision-making and goal setting, important. Regarding the meaningful contents of the rehabilitation, more variation was found in the young people’s responses than in those from the service providers. Keywords: rehabilitation, neuropsychiatric disorders, youth, implementation research
Background
Transitioning youth living with HIV to adult care is a crucial step in the HIV care continuum; however, tools to support transition in sub-Saharan Africa are insufficient. We assessed the effectiveness of an adolescent transition package (ATP) to improve youth readiness for transition to independent HIV care.
Methods
In this hybrid type 1, multicentre, cluster randomised clinical trial, we assessed the effectiveness of an ATP (administered by routine clinic staff, which included standardised assessments and chapter books to guide discussions at scheduled clinic visits) in four counties in Kenya, with HIV clinics randomly assigned 1:1 to ATP or control (standard-of-care practice). Clinics were eligible to participate if they had at least 50 youth (aged 10–24 years) living with HIV enrolled in care. We used restricted randomisation to achieve cluster balance and an independent biostatistician used computer-generated random numbers to assign clinics. We excluded very large clinics with more than 1000 youth, clinics with fewer than 50 youth, paediatric-only clinics, clinics with logistical challenges, and the smallest clinics in Homa Bay county. Youth were eligible for the transition intervention if they were enrolled in participating clinics, were aged 15–24 years, and were aware of their positive HIV diagnosis. Study staff assessed transition readiness scores overall and by four domains (HIV literacy, self-management, communication, and support) in youth with HIV, which were then compared between groups by use of mixed-effects linear regression models. Analysis was by intention-to-treat and was adjusted for multiple comparisons. This trial is registered with ClinicalTrials.gov, NCT03574129.
Findings
We identified 35 clinics in four counties; of these, ten were assigned to the intervention group and ten to the control group. Of 1066 youth with HIV enrolled between Nov 1, 2019, and March 18, 2020, 578 (54%) were in intervention and 488 (46%) in control sites. Mean baseline transition readiness score was 12·1 (SD 3·4) in ATP sites and 11·4 (3·7) in control sites. At 1 year, adjusting for baseline scores, age, and months since HIV disclosure, participants in the ATP group had significantly higher overall transition readiness scores (adjusted mean difference 1·7, 95% CI 0·3–3·1, p=0·024), and higher scores in HIV literacy domain (adjusted mean difference 1·0, 0·2–1·7, p=0·011). At 12 months, 15 serious adverse events were recorded, none of which were thought to be related to study participation.
Interpretation
Integrating ATP approaches could enhance long-term HIV care in youth with HIV as they age into adulthood.
Funding
US National Institutes of Health.
Self-determination (SD) is linked to autonomy and better adult outcomes. Adults with autism spectrum disorder (ASD) are often less independent than cognitively matched peers. Given the frequency with which depression co-occurs in ASD and the established association between depression and SD, we sought to evaluate the influence of both ASD severity and depression on SD among cognitively able emerging adults with ASD. Emerging adults (n = 59) with ASD completed measures of SD, ASD severity, and depression. Both ASD severity and depression were moderately correlated with SD (r = − 0.473; − 0.423, respectively) and with each other (r = 0.625). After controlling for ASD severity, depression did not significantly predict SD. Strengthening SD should be considered in programming to promote independence.
Purpose of Review
This synthesis of treatment research related to anxiety and depression in adolescents and adults with autism spectrum disorder (ASD) focuses on the scientific support for various forms of psychosocial interventions, useful adaptations to standard interventions, and engagement of candidate therapeutic mechanisms.
Recent Findings
There is considerable evidence for the efficacy of cognitive-behavioral therapy (CBT) to treat co-occurring problems with anxiety, but there has been relatively little research on treatment of co-occurring depression. Multiple mechanisms of treatment effect have been proposed, but there has been little demonstration of target engagement via experimental therapeutics.
Summary
Comorbidity between ASD and anxiety and/or mood problems is common. Although there is evidence for the use of CBT for anxiety, little work has addressed how to effectively treat depression. There is emerging support for alternative treatment approaches, such as mindfulness-based interventions. We encourage rigorous, collaborative approaches to identify and manipulate putative mechanisms of change.
Problem/condition:
Autism spectrum disorder (ASD).
Period covered:
2014.
Description of system:
The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance system that provides estimates of the prevalence of autism spectrum disorder (ASD) among children aged 8 years whose parents or guardians reside within 11 ADDM sites in the United States (Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin). ADDM surveillance is conducted in two phases. The first phase involves review and abstraction of comprehensive evaluations that were completed by professional service providers in the community. Staff completing record review and abstraction receive extensive training and supervision and are evaluated according to strict reliability standards to certify effective initial training, identify ongoing training needs, and ensure adherence to the prescribed methodology. Record review and abstraction occurs in a variety of data sources ranging from general pediatric health clinics to specialized programs serving children with developmental disabilities. In addition, most of the ADDM sites also review records for children who have received special education services in public schools. In the second phase of the study, all abstracted information is reviewed systematically by experienced clinicians to determine ASD case status. A child is considered to meet the surveillance case definition for ASD if he or she displays behaviors, as described on one or more comprehensive evaluations completed by community-based professional providers, consistent with the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) diagnostic criteria for autistic disorder; pervasive developmental disorder-not otherwise specified (PDD-NOS, including atypical autism); or Asperger disorder. This report provides updated ASD prevalence estimates for children aged 8 years during the 2014 surveillance year, on the basis of DSM-IV-TR criteria, and describes characteristics of the population of children with ASD. In 2013, the American Psychiatric Association published the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), which made considerable changes to ASD diagnostic criteria. The change in ASD diagnostic criteria might influence ADDM ASD prevalence estimates; therefore, most (85%) of the records used to determine prevalence estimates based on DSM-IV-TR criteria underwent additional review under a newly operationalized surveillance case definition for ASD consistent with the DSM-5 diagnostic criteria. Children meeting this new surveillance case definition could qualify on the basis of one or both of the following criteria, as documented in abstracted comprehensive evaluations: 1) behaviors consistent with the DSM-5 diagnostic features; and/or 2) an ASD diagnosis, whether based on DSM-IV-TR or DSM-5 diagnostic criteria. Stratified comparisons of the number of children meeting either of these two case definitions also are reported.
Results:
For 2014, the overall prevalence of ASD among the 11 ADDM sites was 16.8 per 1,000 (one in 59) children aged 8 years. Overall ASD prevalence estimates varied among sites, from 13.1-29.3 per 1,000 children aged 8 years. ASD prevalence estimates also varied by sex and race/ethnicity. Males were four times more likely than females to be identified with ASD. Prevalence estimates were higher for non-Hispanic white (henceforth, white) children compared with non-Hispanic black (henceforth, black) children, and both groups were more likely to be identified with ASD compared with Hispanic children. Among the nine sites with sufficient data on intellectual ability, 31% of children with ASD were classified in the range of intellectual disability (intelligence quotient [IQ] <70), 25% were in the borderline range (IQ 71-85), and 44% had IQ scores in the average to above average range (i.e., IQ >85). The distribution of intellectual ability varied by sex and race/ethnicity. Although mention of developmental concerns by age 36 months was documented for 85% of children with ASD, only 42% had a comprehensive evaluation on record by age 36 months. The median age of earliest known ASD diagnosis was 52 months and did not differ significantly by sex or race/ethnicity. For the targeted comparison of DSM-IV-TR and DSM-5 results, the number and characteristics of children meeting the newly operationalized DSM-5 case definition for ASD were similar to those meeting the DSM-IV-TR case definition, with DSM-IV-TR case counts exceeding DSM-5 counts by less than 5% and approximately 86% overlap between the two case definitions (kappa = 0.85).
Interpretation:
Findings from the ADDM Network, on the basis of 2014 data reported from 11 sites, provide updated population-based estimates of the prevalence of ASD among children aged 8 years in multiple communities in the United States. The overall ASD prevalence estimate of 16.8 per 1,000 children aged 8 years in 2014 is higher than previously reported estimates from the ADDM Network. Because the ADDM sites do not provide a representative sample of the entire United States, the combined prevalence estimates presented in this report cannot be generalized to all children aged 8 years in the United States. Consistent with reports from previous ADDM surveillance years, findings from 2014 were marked by variation in ASD prevalence when stratified by geographic area, sex, and level of intellectual ability. Differences in prevalence estimates between black and white children have diminished in most sites, but remained notable for Hispanic children. For 2014, results from application of the DSM-IV-TR and DSM-5 case definitions were similar, overall and when stratified by sex, race/ethnicity, DSM-IV-TR diagnostic subtype, or level of intellectual ability.
Public health action:
Beginning with surveillance year 2016, the DSM-5 case definition will serve as the basis for ADDM estimates of ASD prevalence in future surveillance reports. Although the DSM-IV-TR case definition will eventually be phased out, it will be applied in a limited geographic area to offer additional data for comparison. Future analyses will examine trends in the continued use of DSM-IV-TR diagnoses, such as autistic disorder, PDD-NOS, and Asperger disorder in health and education records, documentation of symptoms consistent with DSM-5 terminology, and how these trends might influence estimates of ASD prevalence over time. The latest findings from the ADDM Network provide evidence that the prevalence of ASD is higher than previously reported estimates and continues to vary among certain racial/ethnic groups and communities. With prevalence of ASD ranging from 13.1 to 29.3 per 1,000 children aged 8 years in different communities throughout the United States, the need for behavioral, educational, residential, and occupational services remains high, as does the need for increased research on both genetic and nongenetic risk factors for ASD.
Addressing the challenges of adolescents and emerging adults with autism spectrum disorder is crucial to improving the outcomes of these students in the postsecondary setting. Although secondary and postsecondary educators and staff are critical to helping these students access services, there has been little investigation into the perspectives of this stakeholder group, with respect to the needs of postsecondary students with autism spectrum disorder. A series of focus groups was conducted with secondary and postsecondary educators to understand educator perspectives related to the challenges faced by postsecondary students with autism spectrum disorder. Competence, autonomy and independence, and the development and sustainment of interpersonal relationships emerged as primary areas of difficulty and corresponding need. Results suggest that targeted interventions addressing these areas should be implemented, prior to and during enrollment in a postsecondary setting, to facilitate transition in a comprehensive manner.
Empirically based, consumer-informed programming to support students with Autism Spectrum Disorder (ASD) transitioning to college is needed. Informed by theory and research, the Stepped Transition in Education Program for Students with ASD (STEPS) was developed to address this need. The first level (Step 1) supports high school students and the second level (Step 2) is for postsecondary students with ASD. Herein, we review the extant research on transition supports for emerging adults with ASD and describe the development of STEPS, including its theoretical basis and how it was informed by consumer input. The impact of STEPS on promotion of successful transition into college and positive outcomes for students during higher education is currently being evaluated in a randomized controlled trial.
Understanding the needs of adolescents and emerging adults with Autism Spectrum Disorder (ASD) with respect to transition to postsecondary education is critical to development of user-informed transition programming. Parents of adolescents and emerging adults with ASD (n = 52) and ADHD (n = 47) completed an online survey. Social interaction training and independent living training were services frequently requested by parents in the ASD group. Additionally, parents of postsecondary students with ASD endorsed distinct challenges with self-advocacy, managing emotions, and managing personal/adaptive skills relative to postsecondary students with ADHD. The profile of parent-reported difficulties and needed services compared to transition to postsecondary education for students with ASD is distinguishable from that for ADHD, suggesting individualized transition planning and in-college supports.
This chapter examines the theory of emerging adulthood from the perspective of cultural psychology. First it provides a brief overview of the theory. Then it addresses the ways "one size fits all" with respect to emerging adulthood, that is, the demographic and cultural changes that have taken places in many regions worldwide to lay the groundwork for the emerging adulthood life stage. Next it describes the demographic and cultural variability that exists in emerging adulthood worldwide. Finally, the chapter bridges cultural and developmental psychology by focusing on the cultural beliefs that are at the heart of emerging adulthood, in the West and in other world regions.
We examined the relationship between characteristics associated with autism spectrum disorder and college adjustment in a sample of neurotypical college students. Using the Broad Autism Phenotype Questionnaire and the Student Adaptation to College Questionnaire, we found that higher levels of autism spectrum disorder characteristics were associated with poorer adjustment to college. One subscale of the Broad Autism Phenotype Questionnaire, pragmatic language difficulties, explained the most variance in adjustment. In addition, students who met the previously established cut-off scores for possessing the broad autism phenotype scored significantly lower on all Student Adaptation to College Questionnaire subscales. Finally, pragmatic language difficulties mediated the relationship between college major and academic adjustment. These findings underscore the need for future research to examine how pragmatic language difficulties may impede college success in students with autism spectrum disorder and in the typical population.
This study used propensity score techniques to assess the relationship between transition planning participation and goal-setting and college enrollment among youth with Autism Spectrum Disorders. Using data from Waves 1 through 5 of the National Longitudinal Transition Study-2, this study found that 2- or 4-year college enrollment rates were significantly higher among youth with ASDs who participated in transition planning and those who had a primary transition goal of college enrollment. Educational implications are discussed.
Objective:
Given the critical role of behavior in preventing and treating chronic diseases, it is important to accelerate the development of behavioral treatments that can improve chronic disease prevention and outcomes. Findings from basic behavioral and social sciences research hold great promise for addressing behaviorally based clinical health problems, yet there is currently no established pathway for translating fundamental behavioral science discoveries into health-related treatments ready for Phase III efficacy testing. This article provides a systematic framework for developing behavioral treatments for preventing and treating chronic diseases.
Method:
The Obesity-Related Behavioral Intervention Trials (ORBIT) model for behavioral treatment development features a flexible and progressive process, prespecified clinically significant milestones for forward movement, and return to earlier stages for refinement and optimization.
Results:
This article presents the background and rationale for the ORBIT model, a summary of key questions for each phase, a selection of study designs and methodologies well-suited to answering these questions, and prespecified milestones for forward or backward movement across phases.
Conclusions:
The ORBIT model provides a progressive, clinically relevant approach to increasing the number of evidence-based behavioral treatments available to prevent and treat chronic diseases. (PsycINFO Database Record
Youth with autism spectrum disorders (ASD) experience poor outcomes in the areas of independence, employment, and
postsecondary education. This article provides a critical review of the key aspects of the transition process and identifies
recommendations for policy and practice. The review highlights the literature and explores recommendations across the
manifold elements of this transition, including social and psychological development, high school curriculum, work, and college.
Five policy recommendations are outlined in the areas of school curriculum, employment development, postsecondary
education, inclusion with nondisabled peers, and systematic instruction. Finally, the authors offer recommendations for
further research in the areas of social interaction, increased academic and vocational rigor, employment, technology,
independence, and postsecondary education.
Emerging adulthood is proposed as a new conception of development for the period from the late teens through the twenties, with a focus on ages 18–25. A theoretical background is presented. Then evidence is provided to support the idea that emerging adulthood is a distinct period demographically, subjectively, and in terms of identity explorations. How emerging adulthood differs from adolescence and young adulthood is explained. Finally, a cultural context for the idea of emerging adulthood is outlined, and it is specified that emerging adulthood exists only in cultures that allow young people a prolonged period of independent role exploration during the late teens and twenties.
Little research has examined the popular belief that individuals with an autism spectrum disorder (ASD) are more likely than the general population to gravitate toward science, technology, engineering, and mathematics (STEM) fields. This study analyzed data from the National Longitudinal Transition Study-2, a nationally representative sample of students with an ASD in special education. Findings suggest that students with an ASD had the highest STEM participation rates although their college enrollment rate was the third lowest among 11 disability categories and students in the general population. Disproportionate postsecondary enrollment and STEM participation by gender, family income, and mental functioning skills were found for young adults with an ASD. Educational policy implications are discussed.
We examined the prevalence and correlates of postsecondary education and employment among youth with an autism spectrum disorder (ASD).
Data were from a nationally representative survey of parents, guardians, and young adults with an ASD. Participation in postsecondary employment, college, or vocational education and lack of participation in any of these activities were examined. Rates were compared with those of youth in 3 other eligibility categories: speech/language impairment, learning disability, and mental retardation. Logistic regression was used to examine correlates of each outcome.
For youth with an ASD, 34.7% had attended college and 55.1% had held paid employment during the first 6 years after high school. More than 50% of youth who had left high school in the past 2 years had no participation in employment or education. Youth with an ASD had the lowest rates of participation in employment and the highest rates of no participation compared with youth in other disability categories. Higher income and higher functional ability were associated with higher adjusted odds of participation in postsecondary employment and education.
Youth with an ASD have poor postsecondary employment and education outcomes, especially in the first 2 years after high school. Those from lower-income families and those with greater functional impairments are at heightened risk for poor outcomes. Further research is needed to understand how transition planning before high school exit can facilitate a better connection to productive postsecondary activities.
This report describes the post-high school educational and occupational activities for 66 young adults with autism spectrum disorders who had recently exited the secondary school system. Analyses indicated low rates of employment in the community, with the majority of young adults (56%) spending time in sheltered workshops or day activity centers. Young adults with ASD without an intellectual disability were three times more likely to have no daytime activities compared to adults with ASD who had an intellectual disability. Differences in behavioral functioning were observed by employment/day activity group. Our findings suggest that the current service system may be inadequate to accommodate the needs of youths with ASD who do not have intellectual disabilities during the transition to adulthood.
We examined whether exiting high school was associated with alterations in rates of change in autism symptoms and maladaptive behaviors. Participants were 242 youth with ASD who had recently exited the school system and were part of our larger longitudinal study; data were collected at five time points over nearly 10 years. Results indicated overall improvement of autism symptoms and internalized behaviors over the study period, but slowing rates of improvement after exit. Youth who did not have an intellectual disability evidenced the greatest slowing in improvement. Lower family income was associated with less improvement. Our findings suggest that adult day activities may not be as intellectually stimulating as educational activities in school, reflected by less phenotypic improvement after exit.
Emerging adulthood is proposed as a new conception of development for the period from the late teens through the twenties, with a focus on ages 18-25. A theoretical background is presented. Then evidence is provided to support the idea that emerging adulthood is a distinct period demographically, subjectively, and in terms of identity explorations. How emerging adulthood differs from adolescence and young adulthood is explained. Finally, a cultural context for the idea of emerging adulthood is outlined, and it is specified that emerging adulthood exists only in cultures that allow young people a prolonged period of independent role exploration during the late teens and twenties.
This book outlines the Anxiety and Related Disorders Interview Schedule for DSM-5, Child and Parent Versions. These are considered the gold standard semi-structured interviews used in clinical research and services to assess and diagnose the major mental health conditions affecting children, adolescents, and young adults. These interviews cover the range of conditions identified in the Diagnostic and Statistical Manual of Mental Disorders (DSM), while also providing information for careful case formulation in treatment planning and evaluation of outcomes. Evaluators are able to quantify the severity of illness using a Clinician Severity Rating (CSR), as well as level of severity of symptoms and associated avoidance behavior. Decision rules for combining parent and youth report and examples of CSR levels for the child anxiety triad of separation anxiety disorder, social anxiety disorder, and generalized anxiety disorder are included in the Clinician Manual, as well as detailed information on use of the Autism Supplement.
Praise for the First Edition of Statistical Analysis with Missing Data “An important contribution to the applied statistics literature.... I give the book high marks for unifying and making accessible much of the past and current work in this important area.”—William E. Strawderman, Rutgers University “This book...provide[s] interesting real-life examples, stimulating end-of-chapter exercises, and up-to-date references. It should be on every applied statistician’s bookshelf.”—The Statistician “The book should be studied in the statistical methods department in every statistical agency.”—Journal of Official Statistics Statistical analysis of data sets with missing values is a pervasive problem for which standard methods are of limited value. The first edition of Statistical Analysis with Missing Data has been a standard reference on missing-data methods. Now, reflecting extensive developments in Bayesian methods for simulating posterior distributions, this Second Edition by two acknowledged experts on the subject offers a thoroughly up-to-date, reorganized survey of current methodology for handling missing-data problems. Blending theory and application, authors Roderick Little and Donald Rubin review historical approaches to the subject and describe rigorous yet simple methods for multivariate analysis with missing values. They then provide a coherent theory for analysis of problems based on likelihoods derived from statistical models for the data and the missing-data mechanism and apply the theory to a wide range of important missing-data problems. The new edition now enlarges its coverage to include: Expanded coverage of Bayesian methodology, both theoretical and computational, and of multiple imputation Analysis of data with missing values where inferences are based on likelihoods derived from formal statistical models for the data-generating and missing-data mechanisms Applications of the approach in a variety of contexts including regression, factor analysis, contingency table analysis, time series, and sample survey inference Extensive references, examples, and exercises Amstat News asked three review editors to rate their top five favorite books in the September 2003 issue. Statistical Analysis With Missing Data was among those chosen.
The number of young adults with Autism Spectrum Disorders (ASD) enrolled in higher education institutions has steadily increased over the last decade. Despite this, there has been little research on how to most effectively support this growing population. The current study presents data from a pilot trial of two novel intervention programs developed for college students with ASD. In this small randomized controlled trial, college students with ASD (n = 8) were assigned to one of two new programs - either an intervention based on a virtual reality-Brain-Computer Interface for ASD (BCI-ASD) or a psychosocial intervention, the College and Living Success (CLS) program. Preliminary evidence supports the feasibility and acceptability of both programs, although behavioral outcomes were inconsistent across participants and interventions. Results indicate that expanded research on psychosocial and computer-assisted intervention approaches for this population is warranted, given the preliminary support found in this pilot study.
PART I THE LOGIC OF HIERARCHICAL LINEAR MODELING Series Editor 's Introduction to Hierarchical Linear Models Series Editor 's Introduction to the Second Edition 1.Introduction 2.The Logic of Hierarchical Linear Models 3. Principles of Estimation and Hypothesis Testing for Hierarchical Linear Models 4. An Illustration PART II BASIC APPLICATIONS 5. Applications in Organizational Research 6. Applications in the Study of Individual Change 7. Applications in Meta-Analysis and Other Cases where Level-1 Variances are Known 8. Three-Level Models 9. Assessing the Adequacy of Hierarchical Models PART III ADVANCED APPLICATIONS 10. Hierarchical Generalized Linear Models 11. Hierarchical Models for Latent Variables 12. Models for Cross-Classified Random Effects 13. Bayesian Inference for Hierarchical Models PART IV ESTIMATION THEORY AND COMPUTATIONS 14. Estimation Theory Summary and Conclusions References Index About the Authors
The population of adults with autism spectrum disorder (ASD) is growing at a pace that exceeds our scientific and financial resources. Few supports are available for adults with ASD, and much remains unknown about this developmental period. Fortunately, greater scientific attention is now being paid to the unique challenges and needs of adults with ASD. In this chapter we summarize research on adult outcome and prognosis, including the stability of ASD core and secondary symptoms. We discuss developmental challenges and transitions, identify the most common clinical issues presented by adults with ASD, and summarize the limited available research on adult services and treatment.
Background:
There is a growing call for empirically based programming to support the success of students with autism spectrum disorder (ASD) as they transition to college.
Aims:
The purpose of this study was to identify the needs and challenges faced by adolescents and young adults with ASD in postsecondary education.
Methods:
A mixed methods approach was taken to explore the needs of college-bound and college-enrolled students with ASD. Primary stakeholders (i.e., parents, educators/support staff from secondary and postsecondary institutions, and students) participated in an online survey (n=67) and focus groups (n=15).
Results:
Across the stakeholder groups, commonly identified areas of difficulty included limited interpersonal competence, managing competing demands in postsecondary education, and poor emotional regulation. There was a high degree of agreement across stakeholders in the identified needs and challenges.
Implications:
Findings from this preliminary needs analysis will inform the development of programming to support students with ASD.
Description of System: The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance system in the United States that provides estimates of the prevalence of ASD and other characteristics among children aged 8 years whose parents or guardians live in 11 ADDM sites in the United States. ADDM surveillance is conducted in two phases. The first phase consists of screening and abstracting comprehensive evaluations performed by professional providers in the community. Multiple data sources for these evaluations include general pediatric health clinics and specialized programs for children with developmental disabilities. In addition, most ADDM Network sites also review and abstract records of children receiving specialeducation services in public schools. The second phase involves review of all abstracted evaluations by trained clinicians to determine ASD surveillance case status. A child meets the surveillance case definition for ASD if a comprehensive evaluation of that child completed by a qualified professional describes behaviors consistent with the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) diagnostic criteria for any of the following conditions: autistic disorder, pervasive developmental disorder-not otherwise specified (including atypical autism), or Asperger disorder. This report provides updated prevalence estimates for ASD from the 2010 surveillance year. In addition to prevalence estimates, characteristics of the population of children with ASD are described. Results: For 2010, the overall prevalence of ASD among the ADDM sites was 14.7 per 1,000 (one in 68) children aged 8 years. Overall ASD prevalence estimates varied among sites from 5.7 to 21.9 per 1,000 children aged 8 years. ASD prevalence estimates also varied by sex and racial/ethnic group. Approximately one in 42 boys and one in 189 girls living in the ADDM Network communities were identified as having ASD. Non-Hispanic white children were approximately 30% more likely to be identified with ASD than non-Hispanic black children and were almost 50% more likely to be identified with ASD than Hispanic children. Among the seven sites with sufficient data on intellectual ability, 31% of children with ASD were classified as having IQ scores in the range of intellectual disability (IQ ≤70), 23% in the borderline range (IQ = 71-85), and 46% in the average or above average range of intellectual ability (IQ > 85). The proportion of children classified in the range of intellectual disability differed by race/ethnicity. Approximately 48% of non-Hispanic black children with ASD were classified in the range of intellectual disability compared with 38% of Hispanic children and 25% of non-Hispanic white children. The median age of earliest known ASD diagnosis was 53 months and did not differ significantly by sex or race/ethnicity. Interpretation: These findings from CDC's ADDM Network, which are based on 2010 data reported from 11 sites, provide updated population-based estimates of the prevalence of ASD in multiple communities in the United States. Because the ADDM Network sites do not provide a representative sample of the entire United States, the combined prevalence estimates presented in this report cannot be generalized to all children aged 8 years in the United States population. Consistent with previous reports from the ADDM Network, findings from the 2010 surveillance year were marked by significant variations in ASD prevalence by geographic area, sex, race/ethnicity, and level of intellectual ability. The extent to which this variation might be attributable to diagnostic practices, underrecognition of ASD symptoms in some racial/ethnic groups, socioeconomic disparities in access to services, and regional differences in clinical or school-based practices that might influence the findings in this report is unclear. Public Health Action: ADDM Network investigators will continue to monitor the prevalence of ASD in select communities, with a focus on exploring changes within these communities that might affect both the observed prevalence of ASD and population-based characteristics of children identified with ASD. Although ASD is sometimes diagnosed by 2 years of age, the median age of the first ASD diagnosis remains older than age 4 years in the ADDM Network communities. Recommendations from the ADDM Network include enhancing strategies to address the need for 1) standardized, widely adopted measures to document ASD severity and functional limitations associated with ASD diagnosis; 2) improved recognition and documentation of symptoms of ASD, particularly among both boys and girls, children without intellectual disability, and children in all racial/ethnic groups; and 3) decreasing the age when children receive their first evaluation for and a diagnosis of ASD and are enrolled in community-based support systems.
This study examined the reliability and validity and hypothesized factor structure of two assessments of self-determination, the Arc’s Self-Determination Scale (SDS) and the American Institutes for Research Self-Determination Scale (AIR) in students with autism spectrum disorders (ASD). Ninety-five middle and high school students (17% female and 83% male) aged 13 through 21 years participated. Item analysis and confirmatory factor analysis were conducted separately for the SDS and AIR data. Together, the findings of this study suggest that (a) the two measures in this study show reliability and validity in the measurement of global self-determination in students with ASD and (b) the parameter estimates and the model fit statistics support the hypothesized factor structure of both instruments (with light variation for the SDS). Suggestions for future research and implications for educators are discussed.
This article reports a follow-up study of school leavers with mental retardation or learning disabilities who were surveyed 1- and 3-years after they left school to determine what they were doing in major life areas (employment, independent living or community integration). Students were divided into two groups based on self-determination scores collected during their final year at high school. Comparisons between these groups on outcomes at 1 and 3 years post-graduation indicate that students who were more self-determined fared better across multiple life categories, including employment and access to health and other benefits, financial independence, and independent living.
Studies in the social and behavioral sciences frequently suffer from missing data. For instance, sample surveys often have some individuals who either refuse to participate or do not supply answers to certain questions, and panel studies often have incomplete data due to attrition. Recent comprehensive treatments of the subject of missing data include three volumes produced by the Panel on Incomplete Data of the Committee on National Statistics (Madow, Nisselson, and Olkin 1983; Madow and Olkin 1983; Madow, Olkin, and Rubin 1983) and Little and Rubin (1987).
This study examined correlates of participation in postsecondary education and employment over 12 years for 73 adults with autism spectrum disorders and average-range IQ whose families were part of a larger, longitudinal study. Correlates included demographic (sex, maternal education, paternal education), behavioral (activities of daily living, maladaptive behaviors, autism symptoms), and family (size of maternal social network; maternal depressive symptoms, anxiety, and pessimism) factors. Although two-thirds of adults with autism spectrum disorder participated in competitive employment/postsecondary education during the study, fewer than 25% maintained these activities over the study period. Behavioral characteristics distinguished those who never had competitive employment/postsecondary education from those who sometimes or consistently participated in these activities. Women were considerably less likely than men to maintain employment/postsecondary education over time.
© The Author(s) 2015.
Objective:
We report active treatment group differences on response and remission rates and changes in anxiety severity at weeks 24 and 36 for the Child/Adolescent Anxiety Multimodal Study (CAMS).
Method:
CAMS youth (N = 488; 74% ≤ 12 years of age) with DSM-IV separation, generalized, or social anxiety disorder were randomized to 12 weeks of cognitive-behavioral therapy (CBT), sertraline (SRT), CBT+SRT (COMB), or medication management/pill placebo (PBO). Responders attended 6 monthly booster sessions in their assigned treatment arm; youth in COMB and SRT continued on their medication throughout this period. Efficacy of COMB, SRT, and CBT (n = 412) was assessed at 24 and 36 weeks postrandomization. Youth randomized to PBO (n = 76) were offered active CAMS treatment if nonresponsive at week 12 or over follow-up and were not included here. Independent evaluators blind to study condition assessed anxiety severity, functioning, and treatment response. Concomitant treatments were allowed but monitored over follow-up.
Results:
The majority (>80%) of acute responders maintained positive response at both weeks 24 and 36. Consistent with acute outcomes, COMB maintained advantage over CBT and SRT, which did not differ, on dimensional outcomes; the 3 treatments did not differ on most categorical outcomes over follow-up. Compared to COMB and CBT, youth in SRT obtained more concomitant psychosocial treatments, whereas those in SRT and CBT obtained more concomitant combined (medication plus psychosocial) treatment.
Conclusions:
COMB maintained advantage over CBT and SRT on some measures over follow-up, whereas the 2 monotherapies remained indistinguishable. The observed convergence of COMB and monotherapy may be related to greater use of concomitant treatment during follow-up among youth receiving the monotherapies, although other explanations are possible. Although outcomes were variable, most CAMS-treated youth experienced sustained treatment benefit. Clinical trial registration information-Child and Adolescent Anxiety Disorders (CAMS); URL: http://clinicaltrials.gov. Unique identifier: NCT00052078.
Change is constant in everyday life. Infants crawl and then walk, children learn to read and write, teenagers mature in myriad ways, and the elderly become frail and forgetful. Beyond these natural processes and events, external forces and interventions instigate and disrupt change: test scores may rise after a coaching course, drug abusers may remain abstinent after residential treatment. By charting changes over time and investigating whether and when events occur, researchers reveal the temporal rhythms of our lives. This book is concerned with behavioral, social, and biomedical sciences. It offers a presentation of two of today's most popular statistical methods: multilevel models for individual change and hazard/survival models for event occurrence (in both discrete- and continuous-time). Using data sets from published studies, the book takes you step by step through complete analyses, from simple exploratory displays that reveal underlying patterns through sophisticated specifications of complex statistical models.
The transition from school services to adulthood can be particularly difficult for many adolescents with autism spectrum disorders (ASD). Although some individuals with ASD are able to successfully transition, most are faced with significant obstacles in multiple areas as they attempt to negotiate their way into college, work, community participation, and independent living. This article contains a review of research related to the transition from school to adulthood for youth with ASD in the areas of education, employment, community living, and community integration. These key areas of the transition process are crucial for success in adulthood. A summary of principal conclusions drawn from the current literature and suggestions for future research are provided.
Promoting self-determination has become an important aspect of the educational programs of students with disabilities. There is now a sufficient literature base to support some syntheses that enable researchers to judge their progress in this area to date and to provide direction for future research and practice. For this study, we conducted a literature review of studies that measured or examined global self-determination.
The adaptation of expatriate families to a host country seems crucial to successful fulfilment of international business assignments. The present study focused on personality, family characteristics and characteristics of expatriates’ work life as determinants of the intercultural adjustment of expatriate spouses. Among a sample of 247 expatriate spouses it was first shown that in particular the traits of open-mindedness and emotional stability were associated with expatriate spouses’ adjustment. In addition, family cohesion and family adaptability were found to have an impact on the spouses’ adjustment. Of the work related variables, both support from the company and work satisfaction were related to indicators of adjustment. These effects sustained after controlling for the influence of demographic variables such as duration of expatriation, command of the local language, having visited the country prior to relocation and economic situation that were also found to contribute to spouses’ adjustment. The implications of these findings are discussed.
Autism spectrum disorder (ASD) is associated with amplified emotional responses and poor emotional control, but little is known about the underlying mechanisms. This article provides a conceptual and methodologic framework for understanding compromised emotion regulation (ER) in ASD.
After defining ER and related constructs, methods to study ER were reviewed with special consideration on how to apply these approaches to ASD. Against the backdrop of cognitive characteristics in ASD and existing ER theories, available research was examined to identify likely contributors to emotional dysregulation in ASD.
Little is currently known about ER in youth with ASD. Some mechanisms that contribute to poor ER in ASD may be shared with other clinical populations (e.g., physiologic arousal, degree of negative and positive affect, alterations in the amygdala and prefrontal cortex), whereas other mechanisms may be more unique to ASD (e.g., differences in information processing/perception, cognitive factors [e.g., rigidity], less goal-directed behavior and more disorganized emotion in ASD).
Although assignment of concomitant psychiatric diagnoses is warranted in some cases, poor ER may be inherent in ASD and may provide a more parsimonious conceptualization for the many associated socioemotional and behavioral problems in this population. Further study of ER in youth with ASD may identify meaningful subgroups of patients and lead to more effective individualized treatments.