Examining cognitive accessibility of the VIA Inventory of Strengths for adults with intellectual disability.

BACKGROUND: We evaluated cognitive accessibility of the VIA Inventory of Strengths Youth short form with adults with intellectual disability for use in strengths-based practice. METHODS: We conducted cognitive testing with adults with intellectual disability (n = 33; M age = 36.2; range: 20.4-64.2). Data were coded for the extent to which (1) items were interpreted correctly; (2) participants endorsed items as describing themselves. We calculated descriptive statistics to evaluate item interpretation and response scale use. RESULTS: On average, 59% of participants interpreted items correctly, 20% misinterpreted items, 14% had mixed interpretations. Positive item endorsement was most associated with the response 'Very much like me' (77%); mixed endorsement was most associated with 'Somewhat like me' (39%); and negative endorsement of items was most associated with 'Not at all like me' (54%). CONCLUSIONS: Revisions are necessary for several items to improve accessibility for adults with intellectual disability and should be made in collaboration with this population.

Development and content validity of the Person Experiences Interview Survey (PEIS): a measure of the mental health services experiences of people with developmental disabilities.

Purpose: People with developmental disabilities and mental health service experiences have a right to be included in healthcare decisions, including the evaluation of their mental health services and providers. However, few self-report measures address this need. This study aimed to fill this gap by developing and evaluating the content validity, including comprehension, relevance, and comprehensiveness, of the Person Experiences Interview Survey (PEIS) with people with developmental disabilities and mental health experiences. Methods: The research team established a measurement framework based on the Family Experiences Interview Survey (FEIS), resulting in 21 PEIS items that were written in collaboration with young adults with developmental disabilities and mental health service experiences. Comprehension, relevance, and comprehensiveness were evaluated through cognitive interviews with people with developmental disabilities and mental health service experiences (respondents; n = 9) ages 23-49 years. Comprehensiveness and relevance were also evaluated in focus groups with family caregivers (n = 9) and mental health providers (n = 10) who serve this population. Two researchers independently coded open-ended responses to the PEIS for comprehension. A content validity index (CVI), indicating relevance, was calculated for each participant group for each item, and comprehensiveness was rated for item sets. Results: Fifteen of the 21 items met the criteria of ≥80% comprehension, with 89-100% of responses containing all or some intended information. All items met the CVI ≥80% criterion in at least two of the three groups. In all item sets, between 1 and 4 family members or providers felt one question was missing. Respondents used the response scale in a manner that corresponded with their open-ended descriptions, and family caregivers and providers had positive feedback about the response scale's visual cues and number of choices. Using these findings, four items were removed and six items were revised, resulting in a 17-item measure. Conclusion: This study presents a novel and promising measure, the Person Experiences Interview Survey (PEIS). It also demonstrates that the employment of accessible methods allows people with developmental disabilities to meaningfully evaluate mental health services and providers. The PEIS shows great promise for application in the field by engaging those directly involved in the evaluation of mental health services and providers.

Telehealth information and communication technology access for family caregivers of people with intellectual and developmental disabilities and mental health needs.

BACKGROUND: Telehealth is increasingly used to deliver mental health services. However, the potential benefits of telehealth for people with intellectual and developmental disabilities and mental health needs (IDD-MH) may not be fully realized. This study addresses gaps in knowledge about access to information and communication technologies (ICTs) for individuals with IDD-MH from the perspective of their family caregivers. OBJECTIVE: What factors are associated with access to ICTs among family caregivers of people with IDD-MH who use START services? METHODS: Retrospective analysis of cross-sectional interview data gathered for START use at the onset of COVID-19. START is a crisis prevention and intervention evidence-based model for people with IDD-MH implemented across the USA. To assess needs during COVID-19, START coordinators conducted interviews with 1455 family caregivers between March and July 2020. A multinomial regression model examined correlates of ICT access, as indicated by an index (poor, limited, and optimal access). Correlates included the level of IDD, age, gender, race, ethnicity, rural setting of the person with IDD-MH, and caregiver status. RESULTS: Age (ages 23-30 years) and sole caregiver status were significantly associated with limited access (both p ≤ .001). Age (ages 23-30 years and ≥31 years, p < .001), race (Black or African American, p = .001), ethnicity (Hispanic, p = .004), and sole caregiver status (p < .001) were significantly associated with poor access. CONCLUSIONS: Disparities existed in ICT access for adults, specific racial/ethnic groups, and sole caregiver households. Healthcare policy related to telehealth must consider how ICT access can be equitable for all users with IDD-MH.

Can We Expand the Pool of Youth Who Receive Telehealth Assessments for ADHD? Covariates of Service Utilization.

BACKGROUND: During the COVID-19 pandemic, telehealth became widely utilized for healthcare, including psychological evaluations. However, whether telehealth has reduced or exacerbated healthcare disparities for children with Attention-Deficit/Hyperactivity Disorder (ADHD) remains unclear. METHODS: Data (race, ethnicity, age, insurance type, ADHD presentation, comorbidities, and distance to clinic) for youth with ADHD (Mage = 10.97, SDage = 3.42; 63.71% male; 51.62% White) were extracted from the medical record at an urban academic medical center. Three naturally occurring groups were compared: those evaluated in person prior to COVID-19 (n =780), in person during COVID-19 (n = 839), and via telehealth during COVID-19 (n = 638). RESULTS: Children seen via telehealth were significantly more likely to be older, White, have fewer comorbid conditions, and live farther from the clinic than those seen in person. CONCLUSIONS: The current study suggests that telehealth has not eliminated barriers to care for disadvantaged populations. Providers and institutions must take action to encourage telehealth use among these groups.

Inter-rater Reliability of the Revised Physical and Neurological Examination of Subtle Signs (PANESS) scored using video review.

The Physical and Neurological Examination of Subtle Signs (PANESS) is a brief neuromotor exam designed for use in children. This study examined the inter-rater reliability of PANESS scoring using video review in 23 typically developing youth, aged 10-18 years, who were either never-concussed or evaluated following clinical recovery from concussion. Moderate to excellent inter-rater reliability was identified across PANESS subscores and total score. The strongest inter-rater reliability was observed for the Timed Motor portion of the PANESS (ICCs >.90) suggesting that this section in particular may be a strong candidate for video-based scoring or telehealth administration.

Psychometric Evaluation of the Autism Spectrum Rating Scales (6-18 Years Parent Report) in a Clinical Sample.

ASD is a neurodevelopmental disorder impacting 1 in 44 children and early identification of children with ASD is critical for the intervention. Several screening measures have been developed for early identification, including the Autism Spectrum Rating Scales, 6-18 years Parent Report (ASRS). The ASRS has been understudied, and the current study assessed the validity of the ASRS in a clinical sample of 490 children at a tertiary ASD-specialty clinic. Results indicated that the ASRS demonstrated favorable sensitivity, but poor specificity. True positive screening results were more likely to occur for children with a multiracial background, while they were less likely to occur for children with a high social capital. Overall, though the ASRS has clinical utility as a screening measure, it did not perform effectively to differentiate ASD from Non-ASD clinical disorders.

Replication study for ADOS-2 cut-offs to assist evaluation of autism spectrum disorder.

The Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) has been widely used for ASD assessment. While prior studies investigated sensitivity and specificity of ADOS-2 Modules 1-3, there has been limited research addressing algorithm cut-off scores to optimize ADOS-2 classification. The goal of this study was to assess algorithm cut-off scores for diagnosing ASD with Modules 1-3, and to evaluate alignment of the ADOS-2 classification with the best estimate clinical diagnosis. Participants included 3144 children aged 31 months or older who received ADOS-2 Modules 1-3, as well as the best estimate clinical diagnosis. Five classification statistics were reported for each module: sensitivity, specificity, positive predictive value, negative predictive value, and accuracy (i.e., Receiver Operator Classification Statistic), and these statistics were calculated for the optimal cut-off score. Frequency tables were used to compare ADOS-2 classification and the best estimate clinical diagnosis. Half of the sample received Module 3, 21% received Module 2, and 29% received Module 1. The overall prevalence of ASD was 60%; the male-to-female ratio was 4:1, and half of the sample was non-White. Across all modules, the autism spectrum cut-off score from the ADOS-2 manual resulted in high sensitivity (95%+) and low specificity (63%-73%). The autism cut-off score resulted in better specificity (76%-86%) with favorable sensitivity (81%-94%). The optimal cut-off scores for all modules based on the current sample were within the autism spectrum classification range except Module 2 Algorithm 2. In the No ASD group, 29% had false positives (ADOS-2 autism spectrum classification or autism classification). The ADOS-2 autism spectrum classification did not indicate directionality for diagnostic outcome (ASD 56% vs. No ASD 44%). While cut-off scores of ADOS-2 Modules 1-3 in the manual yielded good clinical utility in ASD assessment, false positives and low predictability of the autism spectrum classification remain challenging for clinicians.

The influence of race on parental beliefs and concerns during an autism diagnosis: A mixed-method analysis.

LAY ABSTRACT: The goal of this study was to examine if there were differences between races in parental concern and belief about autism spectrum disorder (ASD) and the perspectives of clinicians. We studied 489 children with ASD who were having their first evaluation at an ASD clinic. Parents of White children most often believed that their child had ASD. However, White children whose parents believed the child had ASD were less severe in their symptoms. Parents of Black/African American or Hispanic children were more likely to have concerns about communication than parents of White children. In Hispanic families, parental concern about social communication was related to more severe symptoms in children. We discuss the implications of our findings for diagnosis.

Associations of household structure and presence of children in the household with mental distress during the early stages of the U.S. COVID-19 pandemic.

PURPOSE: The objectives of the current study were to (1) assess associations between household structure (i.e., living with spouse compared to living alone, with children, or with a spouse and children), presence of children, and mental distress in April 2020 and change in mental distress (between April and August 2020); and (2) determine whether these associations are moderated by income or sex. PARTICIPANTS: A total of 2,214 adults aged 25-55 from the April and August 2020 waves of the Understanding America study were included in the analytic sample. STUDY METHOD: Multivariable, survey-weighted linear regression models were used to examine associations between explanatory variables (i.e., household structure and number of children) and outcome variables (mental distress in April and change in mental distress), measured via the Patient Health Questionnaire (PHQ)-4. RESULTS: In adjusted models, each additional child under the age of 12 was associated with lower mental distress in April 2020 (ß = -.30, p = .002). Having children aged 13 to 18 and household structure were not significantly associated with mental distress. In interaction models, living with children only was associated with decreased mental distress among individuals reporting low income (interaction ß = -1.28, p = .016) but not high income. Similarly, living with children only was associated with decreased mental distress in females (interaction ß = -1.09, p = .025) but not males. CONCLUSION: This study supports prior literature that demonstrates the positive association of child rearing with psychological well-being and suggests that these benefits may be present even under stay-at-home orders in the early stages of the U.S. COVID-19 pandemic. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Replication study of ADOS-2 Toddler Module cut-off scores for autism spectrum disorder classification.

The Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) has been regarded as the gold standard assessment of autism spectrum disorder (ASD). While clinical validity of ADOS-2 Modules 1-4 have been extensively studied, there has been very limited research examining the clinical validity of ADOS-2 Toddler Module. The goal of this study was to examine alignment of the ADOS-2 Toddler Module classification with clinicians' determination of ASD, with assessing cut-off scores for diagnosing ASD in toddlers. A total of 412 toddlers ages 12-30 months who received ADOS-2 Toddler Module as well as a best estimate clinical (BEC) diagnosis, were included in this study. ADOS-2 Toddler Module cut-off scores were determined using the appropriate algorithms (Algorithm 1 for toddlers aged 12-20 months and those aged 21-30 months with <5 words, Algorithm 2 for toddlers aged 21-30 months with 5 words or more). Receiver operating characteristic (ROC) curves were used to assess cut-off scores that optimized sensitivity and specificity when compared against BEC diagnosis. The selected cut-off scores were examined using frequency tables to compare ADOS-2 classification against BEC diagnosis. For Algorithm 1, classification statistics were optimized at the cut-off score of 12 with an area under the curve (AUC) of 0.92. For Algorithm 2, classification statistics were optimized at the cut-off score of 10 with an AUC of 0.96. The ADOS-2 Toddler Module classification is strongly aligned with BEC diagnosis. The optimal cut-off scores identified in the current study reflect the same results configured by the prior study. LAY SUMMARY: ADOS-2 Toddler Module has been widely used for the ASD assessment, but there have been limited research on its clinical validity. This study is the first replication of the ADOS-2 Toddler Module with a large independent sample. We examined alignment of the ADOS-2 Toddler Module classification with clinicians' determination of ASD, with assessing cut-off scores, and confirmed the clinical validity of ADOS-2 Toddler Module. Cut-off scores of ADOS-2 Toddler Module cited in the manual yielded best clinical utility for diagnosing ASD in toddlers.

Attention Deficit Hyperactivity Disorder Symptoms in Young Children with Autism Spectrum Disorder.

The purpose of the current study was to examine the prevalence of attention deficit hyperactivity disorder (ADHD) symptoms among young children with autism spectrum disorder (ASD), child and parent-related demographic and clinical correlates of ADHD symptoms, and the relationships between co-occurring mental health problems and ADHD symptoms. Data for this cross-sectional study came from 979 toddlers and preschoolers, ages 1.5-5 years, with ASD. The primary outcome, ADHD symptoms, was measured using the Child Behavior Check List 1.5-5 (CBCL). Additional information from the medical record included demographics, parenting stress, and Autism Diagnostic Observation Schedule Second Edition. Descriptive and bivariate (ANOVA, Chi-Square) statistics and multivariate, multinomial regression analyses were used to examine demographic and clinical differences between low, moderate, and high ADHD symptom groups, as defined by 2 ADHD-related subscales. There were 418 (43%) children in the low ADHD symptom group, 294 (30%) in the moderate ADHD symptom group, and 267 (27%) in the high ADHD symptom group. Those with high ADHD symptoms were less likely to be Black or Hispanic and less likely to have parents with a graduate-level education compared to those with low ADHD symptoms. Parenting stress and all CBCL DSM-oriented subscales were positively associated with increasing ADHD symptoms. Among young children with ASD, ADHD symptoms were highly prevalent. The presence of ADHD symptoms was associated with increasing parenting stress and greater levels of other psychopathologies. These data suggest that young children with ASD should be evaluated for ADHD, and mental health as a whole. LAY SUMMARY: We investigated attention deficit hyperactivity disorder (ADHD) symptoms in toddlers and preschoolers with autism spectrum disorder (ASD) from a large sample with diverse race and socioeconomic background. In our study, we found that ADHD symptoms are highly prevalent in young children with ASD and are associated with increasing parenting stress and greater level of other psychopathologies, both internalizing and externalizing problems.

Quality of Life in School-Aged Youth Referred to an Autism Specialty Clinic: A Latent Profile Analysis.

We examined whether different profiles of quality of life (QoL) existed among youth referred to an autism spectrum disorder (ASD) specialty clinic and, if present, determined if these groups were associated with different characteristics. Data were from parental report of 5-17 year-old youth (N = 476) who were scheduled to receive an evaluation at an ASD clinic. Parents completed questionnaires, including the Pediatric Quality of Life Inventory, assessing child and family functioning; providers reported diagnostic impressions. A latent profile analysis found five distinct groups: Low Risk, School Problems, Only Social Emotional Problems, and two Physical/Social Emotional Problems. The groups differed on clinical characteristics and family functioning. These findings have implications for more efficient and effective evaluations in service delivery systems serving complex patients.

Investigating mental health crisis in youth with autism spectrum disorder.

Evidence suggests that youth with autism spectrum disorder (ASD) are at increased risk for experiencing a mental health crisis. Yet, limited systematic research exists on this topic. This study examines the prevalence, phenomenology, and correlates of mental health crisis in children, adolescents, and young adults with ASD. Participants included 462 parents of individuals with ASD (83% male, 86% Caucasian, M = 13.7 years, SD = 4.7) who were enrolled in the Interactive Autism Network, a large online registry of families of individuals with ASD. Parents completed the Mental Health Crisis Assessment Scale, a psychometrically sound measure of mental health crisis for youth with ASD, as well as measures of parental depression, family quality of life, and mental health treatment history. Overall, 32% of parents reported that their child had experienced a mental health crisis during the last 3 months. In the younger group, elopement (88%) and self-injury (81%) were the most frequent behaviors contributing to crisis; physical (60%) and verbal (42%) aggression were the most frequent crisis behaviors in the older group. Correlates of crisis included younger age, increased parental depressive symptoms, and lower family quality of life. Approximately 75% of individuals in crisis had seen a psychiatrist or behavioral therapist/psychologist within the last 3 months and 25% were not engaged in any mental health treatment. In summary, mental health crises were quite prevalent in this online sample of youth with ASD. Identification and treatment of these serious events is critical to reduce morbidity in this population. Autism Res 2020, 13: 112-121. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: This study examines the prevalence and characteristics of mental health crisis in children, adolescents, and young adults with autism spectrum disorder. We found that 32% of individuals in our study had experienced a mental health crisis within the last 3 months. Younger age, increased parental depression, and lower quality of life were associated with crisis. These findings emphasize the importance of developing child and family-based interventions to prevent and treat the mental health crisis in this population.

Child and Family Characteristics that Predict Autism Spectrum Disorder Specialty Clinic Appointment Attendance and Alignment with Providers.

We examined factors contributing to initial appointment attendance, alignment between parents' pre-visit and clinicians' diagnostic impressions, and family commitment to follow-ups at an autism spectrum disorder (ASD) specialty clinic. Sample sizes were n = 6558 (initial), n = 1430 (alignment), and n = 1353 (follow-up). Parents completed surveys and clinicians provided their ASD diagnostic impressions. When children were not receiving intervention, families were less likely to keep their initial appointment. Families residing long distances and having older children were less likely to keep their initial and follow-up appointments. African American families were less likely to keep their initial appointment and expressed initial doubts with providers about the diagnosis. Findings suggest that some children are not getting diagnostic clarity or accessing timely services.