Prevalence of Gastrointestinal Symptoms Among Autistic Individuals, With and Without Co-Occurring Intellectual Disability

Gastrointestinal symptoms (GI) are very common among individuals on the autism spectrum. Prior research reports mixed findings regarding whether individuals with autism and co-occurring intellectual disability (ID) have elevated risk of gastrointestinal symptoms relative to individuals with autism alone. GI symptoms can be challenging to assess in individuals with autism spectrum disorder (ASD) and/or ID given challenges with language, communication, and interoception. Prior research has tended to only include individuals with documented presence or absence of GI symptoms or conditions, that is, to exclude observations in which there is uncertainty regarding presence of GI symptoms. Therefore, none of the prior autism studies reported the association between ID and the certainty regarding presence or absence of GI symptoms. The objective of this study was to examine differences in parental certainty and odds of reporting gastrointestinal signs and symptoms among children on the autism spectrum, with and without intellectual disability. Participants were 308 children (36% ID) with a clinical diagnosis of autism spectrum disorder (6-17 years). Parents endorsed whether their child had experienced or displayed a range of signs or symptoms related to GI problems in the past 3 months. Parents of autistic children with ID were less certain about the presence of more subjective symptoms, including abdominal pain, nausea, and bloating. Conversely, certainty regarding more objective signs (e.g., constipation, diarrhea, spitting up, etc.) was not significantly different. More accurate measures for GI signs/symptoms are needed for this population

Analysis of Race and Sex Bias in the Autism Diagnostic Observation Schedule (ADOS-2)

Importance: There are long-standing disparities in the prevalence of autism spectrum disorder (ASD) across race and sex. Surprisingly, few studies have examined whether these disparities arise partially out of systematic biases in the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2), the reference standard measure of ASD. Objective: To examine differential item functioning (DIF) of ADOS-2 items across sex and race. Design, Setting, and Participants: This is a cross-sectional study of children who were evaluated for ASD between 2014 and 2020 at a specialty outpatient clinic located in the Mid-Atlantic region of the US. Data were analyzed from July 2021 to February 2022. Exposures: Child race (Black/African American vs White) and sex (female vs male). Main Outcomes and Measures: Item-level biases across ADOS-2 harmonized algorithm items, including social affect (SA; 10 items) and repetitive/restricted behaviors (RRBs; 4 items), were evaluated across 3 modules. Measurement bias was identified by examining DIF and differential test functioning (DTF), within a graded response, item response theory framework. Statistical significance was determined by a likelihood ratio χ2 test, and a series of metrics was used to examine the magnitude of DIF and DTF. Results: A total of 6269 children (mean [SD] age, 6.77 [3.27] years; 1619 Black/African American [25.9%], 3151 White [50.3%], and 4970 male [79.4%]), were included in this study. Overall, 16 of 140 ADOS-2 diagnostic items (11%) had a significant DIF. For race, 8 items had a significant DIF, 6 of which involved SA. No single item showed DIF consistently across all modules. Most items with DIF had greater difficulty and poorer discrimination in Black/African American children compared with White children. For sex, 5 items showed significant DIF. DIF was split across SA and RRB. However, hand mannerisms evidenced DIF across all 5 algorithms, with generally greater difficulty. The magnitude of DIF was only moderate to large for 2 items: hand mannerisms (among female children) and repetitive interests (among Black/African American children). The overall estimated effect of DIF on total DTF was not large. Conclusions and Relevance: These findings suggest that the ADOS-2 does not have widespread systematic measurement bias across race or sex. However, the findings raise some concerns around underdetection that warrant further research

Profiles and Correlates of Language and Social Communication Differences Among Young Autistic Children

Delays in early language development are characteristic of young autistic children, and one of the most recognizable first concerns that motivate parents to seek a diagnostic evaluation for their child. Although early language abilities are one of the strongest predictors of long-term outcomes, there is still much to be understood about the role of language impairment in the heterogeneous phenotypic presentation of autism. Using a personcentered, Latent Profile Analysis, we first aimed to identify distinct patterns of language and social communication ability in a clinic-based sample of 498 autistic children, ranging in age from 18 to 60 months (M = 33 mo, SD = 12 mo). Next, a multinomial logistic regression analysis was implemented to examine sociodemographic and child-based developmental differences among the identified language and social communication profiles. Three clinically meaningful profiles were identified from parent-rated and clinician-administered measures: Profile 1 (48% of the sample) “Relatively Low Language and Social Communication Abilities,” Profile 2 (34% of the sample) “Relatively Elevated Language and Social Communication Abilities,” and Profile 3 (18% of the sample) “Informant Discrepant Language and Relatively Elevated Social Communication Abilities.” Overall, young autistic children from the lowest-resource households exhibited the lowest language and social communication abilities, and the lowest non-verbal problem-solving and fine-motor skills, along with more features of attention-deficit/hyperactivity disorder and atypical auditory processing. These findings highlight the need for effective community-based implementation strategies for young autistic children from low-resource households and underrepresented communities to improve access to individualized quality care

Experiences With the Mental Health Service System of Family Caregivers of Individuals With an Intellectual/Developmental Disability Referred to START

People with intellectual and developmental disabilities (IDD) frequently have behavioral or mental health needs, but experience obstacles to treatment. Family caregivers are often responsible for coordinating the care of individuals with IDD. This study examined family caregiver experiences using intake data from a national tertiary crisis intervention model designed for people with IDD and mental health needs. Caregivers (n = 488) completed the Family Experiences Interview Schedule. Less than half of families reported satisfaction with the mental health services received. Notable gaps were in crisis, night and weekend services, choice of services and providers, communication and coordination between providers, and specialized training. Experiences were worse for caregiving fathers and individuals with IDD with co-occurring chronic medical conditions

Improvement in Mental Health Outcomes and Caregiver Service Experiences Associated With the START Program

This study examined outcomes from the Systemic, Therapeutic, Assessment, Resources, and Treatment (START) program, a community-based tertiary care model for individuals with intellectual and developmental disabilities and mental health needs. The sample included 111 START service users and their family caregivers, who were receiving START Clinical Team services, located in the Northeast and Southwest regions of the United States. Results from the analyses found a significant 1-year pre-post improvement in caregiver service experiences and mental health symptoms of the service user. A significant decrease in psychiatric hospitalizations and emergency department visits was also found (all p \u3c .01). These data suggest that START holds promise in improving outcomes, for both the caregiver and service user, while reducing dependence on costly and restrictive hospital-based services

Predictors of Mental Health Crises Among Individuals With Intellectual and Developmental Disabilities Enrolled in the START Program

Objective: Individuals with intellectual and developmental disabilities disproportionately use emergency psychiatric services compared with their neurotypical peers, suggesting that such individuals and their supports are at increased risk for crisis events. This prospective study examined the timing, outcomes, and predictors of mental health crises for this population. Methods: The data came from Systemic, Therapeutic, Assessment, Resources, and Treatment (START), a national model that provides mental health crisis services for those with intellectual and developmental disabilities in the United States. The study included 1,188 individuals from four U.S. regions enrolled between 2018 and 2019. The outcome was urgent crisis contacts with the START program. Baseline and clinical predictors were examined with multivariate regression analyses. Results: More than a quarter had at least one crisis contact, and 9% had three or more. Contacts increased within the initial 3 months of START enrollment, followed by a steep drop-off thereafter; few contacts happened after 1 year. Almost 45% of the contacts occurred after hours, and 30% involved police. Clinical factors predicted crisis contact most robustly, followed by lack of occupational supports. After START crisis intervention, 73% of individuals remained in their primary setting. Conclusions: For individuals with intellectual and developmental disabilities and mental health needs, crisis stabilization resources are needed, including after hours. Results clearly identify times and risk factors for mental health crisis contacts, including frequent involvement with emergency responders. Importantly, gainful employment conveyed benefits for community stabilization. Findings may be leveraged to develop effective mental health crisis intervention services and supports for this underserved group

Clinical applications of the VIA Inventory of Strengths with Individuals with Intellectual/Developmental Disabilities

Strengths-based clinical practices are critical for supporting the wellbeing of individuals with intellectual and/or developmental disabilities. The VIA Inventory of Strengths (‘VIA Survey’) is an assessment grounded in positive psychology that may contribute to strengths-based practices. To identify how this assessment is used in clinical practice with individuals with intellectual and/or developmental disabilities, we conducted focus groups (n = 15) with clinicians who have used this survey with this population. We also asked individuals with intellectual and/or developmental disabilities (n = 36) to comment on the process of completing the VIA Survey. We found that clinicians utilize the VIA Survey with individuals with intellectual and/or developmental disability to foster self-esteem and self-understanding, provide a framework for understanding strengths, communicate across service systems and shape strengths-based interventions. Individuals with intellectual and/or developmental disabilities also endorsed use of the survey to increase their self-knowledge and self-esteem. Future research should address accessibility of the survey to foster greater uptake and propose standard protocols for independent survey completion

Diagnostic certainty during in‐person and telehealth autism evaluations

Abstract Background Many diagnostic evaluations abruptly shifted to telehealth during the COVID‐19 pandemic; however, little is known about the impact on diagnosis patterns for children evaluated for autism spectrum disorder (ASD). The purpose of this clinical research study was to examine (1) the frequency of diagnoses evaluated beyond ASD; (2) the frequency of diagnoses made, including ASD; and (3) clinician diagnostic certainty for all diagnoses evaluated for children who received an evaluation due to primary concerns about ASD via telehealth during the pandemic compared to those evaluated in person before the pandemic at an ASD specialty clinic. Methods The sample included 2192 children, 1–17 years (M = 6.5 years; SD = 3.9), evaluated by a physician/psychologist at an ASD specialty center. A total of 649 children were evaluated in‐person September 1, 2019–March 13, 2020 (pre‐pandemic) and 1543 were evaluated via telehealth March 14, 2020–July 26, 2021 (during pandemic). Upon completion of each evaluation, clinicians provided a final diagnostic determination (i.e., “Yes,” “No,” “Possible,” or “Not Assessed”) for the following DSM‐5 conditions: ASD, attention‐deficit/hyperactivity disorder (ADHD), intellectual developmental disorder (IDD), anxiety (ANX), depression (DEP), and behavioral disorder (BD). “Possible” indicated lower certainty and the diagnosis was not provided. “Not Assessed” indicated the disorder was not evaluated. Results Diagnostic certainty for ASD and ADHD was lower and clinicians evaluated for and made diagnoses of IDD less often during evaluations that occurred via telehealth during the pandemic versus in person before the pandemic. DEP and BD were diagnosed more frequently, diagnostic certainty of DEP was lower, and no differences in the frequency of ANX diagnoses emerged during evaluations conducted via telehealth during the pandemic compared to those conducted in person before the pandemic. Conclusions Differences emerged in the frequency of diagnoses evaluated and made and diagnostic certainty for evaluations conducted via telehealth during the pandemic compared to in person before the pandemic, which likely impacted patients and reflect real‐word challenges. Future work should examine whether these patterns are generalizable and the mechanisms that contribute to these differences