A pilot study examining the use of the autism diagnostic observation schedule in community-based mental health clinics

Community-based mental health (CMH) services play an important, but relatively understudied role in the identification and treatment of youth with autism spectrum disorder (ASD) who may be receiving care for other psychiatric conditions. Little is known about the role of standardized ASD assessment measures administered by providers working in generalist community-based mental health (CMH) settings. This pilot study extracted data from three CMH clinics to examine the use of the Autism Diagnostic Observation Schedule (ADOS) by 17CMH providers who received ASD assessment training with 62 youth (Mean = 10.69 years) referred for an ASD diagnostic evaluation. Results indicated that 57% of youths assessed ultimately received an ASD diagnosis. All cases given a final ASD diagnosis were classified as “Autism” or “ASD” on the ADOS. Seventy percent of youth who did not receive a final ASD diagnosis were classified as “Non-Spectrum” on the ADOS. In these false positive cases, report narratives indicated that social communication difficulties identified on the ADOS were explained by symptoms of other mental health conditions (e.g., ADHD, anxiety). Future research is needed to examine the utility of the ADOS when used by CMH providers to facilitate CMH capacity to identify ASD.     

Prioritizing core components of successful transitions from child to adult mental health care: a national Delphi survey with youth,caregivers, and health professionals

Youth accessing mental health care often experience a disruption in care as they attempt to transition between child and adolescent mental health services (CAMHS) and adult mental health services (AMHS). Few studies have evaluated interventions seeking to improve the experience and outcomes of CAMHS–AMHS transitions, in part due to lack of consensus on what constitutes best practices in intervention success. As such, the aim of this study was to engage patients, caregivers, and clinicians to prioritize core components of successful CAMHS–AMHS transitions which can be used in the design or evaluation of transition interventions. As such, a Delphi study was conducted to determine core components of successful CAMHS–AMHS transitions. Guided by the principles of patient-oriented research, three balanced expert panels consisting of youth, caregivers, and clinicians ranked and provided feedback on the importance and feasibility of core components of CAMHS-AMHS transitions. Components endorsed as feasible or important with ≥ 70% agreement from any panel moved to the next round. As a result, a list of 26 core components of CAMHS–AMHS transitions has been refined which can be used in the design, implementation, or evaluation of interventions intended to improve transition experiences and outcomes for youth in mental health care. Youth and families were engaged in an expert advisory role throughout the research process, contributing their important perspectives to the design and implementation of this study, as well as interpretation of the findings.

     

Understanding the Landscape of Psychosocial Intervention Practices for Social,Emotional, and Behavioral Challenges in Youth With ASD: A Study Protocol

Introduction: There is a significant gap between research and practice for mental health services for youth with autism spectrum disorder (ASD). Despite increased numbers of individuals with ASD treated in community settings, little is known about the array of practices used with this population and the extent to which providers are aware of and use evidence-based strategies. The goal of this article is to describe a protocol for developing a more comprehensive understanding of the landscape of current intervention practices and attitudes regarding the treatment of psychosocial issues in youth with ASD in community settings within the United States. Methods: This article describes our research protocol for developing a comprehensive survey—the Usual Care for Autism Survey (UCAS)—to capture the depth and breadth of practices for youth with ASD and attitudes of community-based providers. Phase 1 will involve a comprehensive review of published literature to identify intervention practices for social difficulties, anxiety, and externalizing symptoms in youth with ASD (7–22 years). Phase 2 will involve developing and piloting the UCAS using the qualitative approaches and Delphi methodology. In Phase 3, we will distribute the UCAS to approximately 700 providers across the United States to ascertain the frequency of intervention practices being delivered to youth with ASD and provider attitudes toward practices in usual care practice settings. Conclusions: Results will assist the work of researchers, clinicians, and policymakers to support the implementation of effective practices and improve the quality of services for youth with ASD.     

Autism Spectrum Disorder and Transition-Aged Youth

Purpose of Review

This article discusses common issues surrounding transition to adulthood in youth with autism spectrum disorder (ASD). We review recent evidence on co-occurring medical and mental health conditions and topics of education and employment, sexuality and relationships, independent living, and financial support.

Recent Findings

Transitioning individuals with ASD have increased risk for several medical and behavioral health comorbidities and should be routinely screened for co-occurring conditions. Evidence on interventions for mental health disorders is limited but emerging, particularly with respect to mindfulness training and cognitive behavioral therapy. Many autistic adults or their families express a desire for independent living, participation in education/employment, and intimacy and social relationships, but they often lack skills and/or resources to successfully achieve these outcomes.

Summary

The time of transition to adulthood for adolescents with ASD is an opportunity for physicians to provide anticipatory guidance and necessary supports around issues of community participation. To allow time for planning, these discussions should occur well before the child reaches adulthood. Clinicians should also routinely screen for and address medical and/or behavioral health comorbidities.

     

Disruptive Behavior Disorders in Adolescents With ASD: Comparisons to Youth With Intellectual Disability or Typical Cognitive Development

Dual diagnosis of autism spectrum disorder (ASD) and behavior problems and/or mental disorders has become increasingly recognized and studied. Reported rates in samples of mixed-age youth with ASD are often above 70%, making this comorbidity more the rule than the exception. The present study compared rates of disruptive behavior disorder diagnosis in a sample of 13-year-old adolescents with ASD (n = 58), intellectual disability (ID; n = 40), or typical cognitive development (TD; n = 100). In youth without ASD, there was a high negative correlation between IQ and disruptive behavior disorders, assessed with the Child Behavior Checklist (CBCL) and the Diagnostic Interview Schedule for Children (DISC). In youth with ASD, however, the presence of a comorbid disruptive behavior disorder was unrelated to IQ, indicating that higher intelligence was not a protective factor for disruptive behavior disorders (DBDs) in ASD. On four CBCL scales and two DISC scales examined, youth with ASD had significantly higher rates than TD youth, though not generally higher than youth with ID. The most commonly diagnosed comorbid disorder in the early adolescents with ASD was attention-deficit/hyperactivity disorder. This has implications for planning school-based interventions, particularly for high-functioning children with ASD who are more likely to be fully included in general education.     

The perspectives of students with Autism Spectrum Disorder on the transition from primary to secondary school: A systematic literature review

BackgroundThe transition from primary to secondary school is a period of intense sociocultural and environmental change, which can present specific challenges for children with Autism Spectrum Disorder (ASD). Children’s perspectives are often lacking in research on ASD, and this is also the case for research on children with ASD at the primary to secondary school transition.MethodThis systematic literature review serves an important purpose by comprehensively identifying and synthesising the empirical research on the first-hand accounts of children with ASD in relation to their transition from primary to secondary school.ResultsAcross the results of nine studies that met inclusion criteria, four core themes emerged: relationships, feelings and expectations regarding transition, facilitators and barriers of a successful transition, and heterogeneity of needs relating to ASD.ConclusionThe results emphasise the importance of reducing the concerns of children with ASD through transition planning as well as the adoption of a less negative narrative around the primary-secondary transition. Similar to their typically developing peers, children with ASD can have a positive experience of the primary-secondary transition.     

Systematic review of disparities in health care for individuals with autism spectrum disorders in the United States

Authors conducted a systematic review of the literature to determine whether differences exist for children with ASD versus children without ASD in the utilization, accessibility, and cost of their health care services. Population and outcome variables of interest were used to search for articles in Medline and PsycInfo databases. Thirteen studies comparing ASD and other groups of children without ASD were reviewed. A review of these publications revealed that children with ASD have higher health care utilization and costs, and worse access to care and medical homes. These results have implications for autism research and insurance policy to reduce health care utilization and costs, and ensure proper insurance coverage.     

Commentary: the role of mental health services in preadjudicated juvenile detention centers

The role of preadjudicated juvenile detention centers (JDCs) in treating children and adolescents with mental health needs has continued to receive national attention. Legal actions mandating improved health care services over the past decade, coupled with a national focus on detainees' mental health needs, have led to the increased presence of mental health professionals in JDCs. In this context, we must build on the current "call to action" and develop innovative blueprints for the provision of mental health services for detained youth. Although operationalizing this movement is complicated, we must be prepared to sustain its effects by developing effective communication and planning among correctional health care organizations, universities, municipalities, and other stakeholders.     

Characteristics and anxiety symptom presentation associated with autism spectrum traits in youth with anxiety disorders

There is limited information about the nature of anxiety among youth with symptoms of autism spectrum disorder (ASD). The present study examined (a) differences in the clinical characteristics of anxious youth with and without symptoms of ASD and (b) the symptoms of anxiety that best distinguish between these groups. Results indicated that anxious youth with elevated ASD symptoms had significantly more diagnoses (e.g., specific phobias), and were more likely to meet diagnostic criteria for social phobia (and list social concerns among their top fears) than youth without elevated ASD symptoms. At the symptom level, severity of interpersonal worry based on parent report and severity of fear of medical (doctor/dentist) visits based on youth report best differentiated ASD status. The findings inform diagnostic evaluations, case conceptualization, and treatment planning for youth with anxiety disorders and ASD symptoms.     

Health Concerns and Health Service Utilization in a Population Cohort of Young Adults with Autism Spectrum Disorder

Individuals with autism spectrum disorder (ASD) have many health needs that place demands on the health service sector. This study used administrative data to compare health profiles in young adults 18–24 years of age with ASD to peers with and without other developmental disability. Young adults with ASD were more likely to have almost all the examined clinical health issues and health service use indicators compared to peers without developmental disability. They were more likely to have at least one psychiatric diagnosis, and visit the family physician, pediatrician, psychiatrist, and emergency department for psychiatric reasons, compared to peers with other developmental disability. Planning for the mental health care of transition age adults with ASD is an important priority for health policy.     

Transition from child and adolescent mental health care to adult services for young people with Attention-Deficit/Hyperactivity Disorder (ADHD) or Autism Spectrum Disorder (ASD) in Europe: Barriers and recommendations

Transition in mental health care is the process ensuring continuity of care of a young patient arriving at the CAMHS (Child and Adolescent Mental Health Service) age boundary within mental health services. Transition refers to a transfer to an adult mental health service (AMHS), to private care or other mental health community services. A transition plan can also lead to a managed end of specialized care with involvement of a general practitioner or social services. For young people with a diagnosis of ADHD (Attention Deficit Hyperactivity Disorder) or ASD (Autism Spectrum Disorder), two disorders that persist into adulthood, an optimal transition would ensure continuity of care or facilitate access to specialized care in the case of a discharge. Transition typically occurs during adolescence, a known sensitive period when young people may experience major changes at several levels: physiological, psychological and social. Any barrier in the transition process resulting in discontinuity of care may worsen the symptoms of ADHD or ASD and can ultimately adversely affect the global mental health of young people with such neurodevelopmental disorders. The objectives of this narrative review are: 1/to identify the barriers in the transition process in mental health services often faced by young people with these two disorders; 2/to highlight specific recommendations for strengthening the CAMHS-AMHS interface that have been proposed by various countries in Europe.     

The Heavy Burden of Psychiatric Comorbidity in Youth with Autism Spectrum Disorders: A Large Comparative Study of a Psychiatrically Referred Population

The objective of the study was to systematically examine patterns of psychiatric comorbidity in referred youth with autism spectrum disorders (ASD) including autistic disorder and pervasive developmental disorder not otherwise specified. Consecutively referred children and adolescents to a pediatric psychopharmacology program were assessed with structured diagnostic interview and measures of psychosocial functioning. Comparisons were made between those youth satisfying diagnostic criteria for ASD and age and sex matched youth without ASD referred to the same clinical program. 9.3% (217/2323) of the referred youth (age range: 3–17 years) met DSM-III-R criteria for ASD. ASD youth suffered from significantly higher number of comorbid disorders than comparisons (6.4 ± 2.7 vs. 5.2 ± 2.9; p < 0.001). Ninety-five percent of the youth with ASD had three or more comorbid psychiatric disorders and 74% had five or more comorbid disorders. ASD youth were also more functionally impaired and required extra-assistance in school and therapeutic interventions at higher rates than age and sex matched non-ASD referred youth. Youth with ASD have high levels of psychiatric comorbidity and dysfunction comparable to the referred population of youth without ASD. These findings emphasize the heavy burden of psychiatric comorbidity afflicting youth with ASD and may be important targets for intervention.     

Family-centered care practices in a multidisciplinary sample of pediatric professionals providing autism spectrum disorder services in the United States

Family-centered care (FCC) has not been studied extensively in the field of autism spectrum disorders (ASD), but has been highlighted as a critical component of practice with youth with ASD. The aim of this study was to examine predictors (e.g., the theory of planned behavior, [TPB]) of providing family-centered care (FCC) services to youth with ASD in pediatric professionals from a range of disciplines. A multidisciplinary (e.g., medicine, psychology, education, etc.) sample of professionals (N = 709) who endorsed providing services to youth with ASD in the United States was recruited from online provider listings, listservs, etc. Hierarchical multiple regressions examined the relationship of demographic and TPB predictors to professionals' self-reported FCC practices. Professionals reported a high degree of using FCC in their practice with youth with ASD. Attitudes and perceived behavioral control predicted self-reported FCC practices, while subjective norms did not. Experienced practitioners reported using FCC practices in spite of not having necessarily received FCC training. Discipline differences were evident in rates of reported FCC. The Theory of Planned Behavior is helpful in understanding FCC practices and attention should be given to training professionals in FCC as they work with youth with ASD. Implications and future directions are discussed.     

High Risk for Severe Emotional Dysregulation in Psychiatrically Referred Youth with Autism Spectrum Disorder: A Controlled Study

To assess prevalence and severity of emotional dysregulation (ED) in psychiatrically referred youth with autism spectrum disorder (ASD). ASD youth (N?=?123) were compared to youth with attention-deficit/hyperactivity disorder (ADHD) and controls. The majority of psychiatrically referred youth with ASD had positive Child Behavior Checklist-ED (CBCL-ED) profile that was significantly higher than in youth with ADHD (82 vs. 53%; p?<?0.001). The severe emotional dysregulation (SED) profile was significantly greater in ASD youth than ADHD (44 vs. 15%; p?<?0.001). In the presence of SED profile ASD youth suffered from greater severity of autism, associated psychopathology, and psychosocial dysfunction. Greater than expected prevalence of SED in psychiatrically referred youth with ASD that identifies distinct clinical correlates associated with severe morbidity and dysfunction.     

The Prevalence of Youth with Autism Spectrum Disorders in the Criminal Justice System

Past surveys have reported high rates of youth with disabilities in the juvenile justice system, however, little research has examined the frequency with which youth with Autism spectrum disorders (ASD) are in contact with law enforcement. Using records linkage with the Department of Juvenile Justice and the South Carolina Law Enforcement Division and the South Carolina Autism and Developmental Disabilities Monitoring Program (SC ADDM), this study compares the frequency, type, and outcome of criminal charges for youth with ASD and non-ASD youth. Youth with ASD had higher rates of crimes against persons and lower rates of crimes against property. Youth with ASD were more likely to be diverted into pre-trial interventions and less likely to be prosecuted than comparison youth. When compared to the overall SC ADDM sample, charged youth were less likely to have comorbid intellectual disability.     

Depression in Youth With Autism Spectrum Disorder: The Role Of ASD Vulnerabilities and Family–Environmental Stressors

Individuals with autism spectrum disorder (ASD) are at an increased risk of mental health problems, with depression being one of the most common presenting issues. The current study used a diathesis-stress model to investigate stressors (parent distress and negative life events [NLE]) and vulnerabilities (youth age and intellectual functioning) as predictors of depressive symptoms in youth with ASD. Parents of youth with ASD (N = 91; ages 7 to 25 years) completed online questionnaires about demographic variables, distress, NLE, and youth depression. High parent distress and exposure to 3 or more NLE were associated with symptoms of depression in individuals with ASD. Also, youth with ASD who were younger, or who were noted to have average or above-average intellectual functioning, were reported to have higher depression levels than other individuals with ASD. None of the vulnerabilities were found to moderate the relationships between stressors and depression.     

Racial and ethnic disparities in pediatric mental health

Disparities remain in mental health status and care for racial and ethnic minority youth, despite national attention to disparity reduction. This article offers a comprehensive picture of the status of pediatric disparities, by addressing the major areas affecting minority youth mental health, including: prevention of problems, need for services, access to care, mental health treatment types, and treatment outcomes. The authors address relevant factors in the family, community and socioeconomic context, and describe various local and national programs that aim to tackle the obstacles and fill the gaps in high-quality care for racial/ethnic minority youth. The article concludes by offering recommendations for improvement that acknowledge the importance of understanding preferences and attitudes toward treatment, ensuring that screening and diagnosis is appropriate to minority youth, and ensuring that evidence-based programs are available at multiple levels to best service children and succeed in addressing their needs.     

Systematic identification and stratification of help-seeking school-aged youth with mental health problems: a novel approach to stage-based stepped-care

We investigated whether a novel visitation model for school-aged youth with mental health problems based on a stage-based stepped-care approach facilitated a systematic identification and stratification process without problems with equity in access. The visitation model was developed within the context of evaluating a new transdiagnostic early treatment for youth with anxiety, depressive symptoms, and/or behavioural problems. The model aimed to identify youth with mental health problems requiring an intervention, and to stratify the youth into three groups with increasing severity of problems. This was accomplished using a two-phase stratification process involving a web-based assessment and a semi-structured psychopathological interview of the youth and parents. To assess problems with inequity in access, individual-level socioeconomic data were obtained from national registers with data on both the youth participating in the visitation and the background population. Altogether, 573 youth and their parents took part in the visitation process. Seventy-five (13%) youth had mental health problems below the intervention threshold, 396 (69%) were deemed eligible for the early treatment, and 52 (9%) had symptoms of severe mental health problems. Fifty (9%) youth were excluded for other reasons. Eighty percent of the 396 youth eligible for early treatment fulfilled criteria of a mental disorder. The severity of mental health problems highlights the urgent need for a systematic approach. Potential problems in reaching youth of less resourceful parents, and older youth were identified. These findings can help ensure that actions are taken to avoid equity problems in future mental health care implementations.

     

School Mental Health and Foster Care: A Logical Partnership

School mental health is increasingly recognized as an effective framework of care for enhancing access to high quality mental health services for school age youth. This article discusses the potential role that school mental health can play in helping to address the mental health needs of children and adolescents in foster care, a group with elevated risk for mental health and educational problems when compared to other children and adolescents living in high risk environments. A full continuum of school mental health services, from prevention to intervention, offers opportunities to reach these youth before academic and emotional-behavioral problems escalate. Benefits and challenges to providing services to youth in foster care through school mental health are discussed and next steps toward developing a training curriculum that addresses core competencies needed for effective school-mental health-foster care integration are addressed.