Prevalence of Functional Disabilities and Associations Among Disabilities, Violence, and HIV Among Adolescents and Young Adults in Lesotho.

INTRODUCTION: Lesotho has the second-highest prevalence of HIV. Despite progress in achieving HIV epidemic control targets, inequities persist among certain groups, particularly associations between disability, HIV, and violence. We assessed the prevalence of disability and examined associations between disability and HIV and violence using data from the 2018 Lesotho Violence Against Children and Youth Survey (VACS). METHODS: Lesotho VACS was a nationally representative survey of females and males ages 13-24. We assessed the associations between disability status and HIV, sexual risk behaviours, and violence using logistic regression, incorporating survey weights. RESULTS: Weighted functional disability prevalence was 14.1% for females (95% confidence interval [CI] 12.7-15.4) and 7.3% for males (5.3-9.2). Compared with females with no disabilities, females with disabilities had higher odds of being HIV positive (adjusted odds ratio [aOR] 1.92, 1.34-2.76), having transactional sex (aOR 1.79, 1.09-2.95), and experiencing any lifetime violence (aOR 2.20, 1.82-2.65), sexual violence (aOR 1.77, 1.36-2.31), emotional violence (2.02. 1.61-2.53), physical violence (aOR 1.85, 1.54-2.24), witnessing interparental violence (aOR 1.71, 1.46-2.01), and witnessing community violence (aOR 1.52, 1.26-1.84). Males with disabilities had higher odds of having transactional sex (aOR 4.30, 1.35-13.73), having recent multiple sex partners (aOR 2.31, 1.13-4.75), experiencing emotional violence (aOR 2.85, 1.39-5.82), and witnessing interparental violence (aOR 1.78, 1.12-2.84). HIV models for males did not converge due to low numbers. CONCLUSION: Findings emphasize the importance of inclusion and accessibility for adolescents and young adults with disabilities in prevention and services for violence and HIV. Ending HIV in Lesotho depends on addressing the vulnerabilities that lead to potential infection including violence and ensuring equitable services for all.

Lessons learned: COVID-19 vaccinations and people with disabilities.

This manuscript is being submitted as a Commentary; Abstract not applicable.

Variation in identifying children and adolescents with disability and developmental disability in population-based public health surveys.

BACKGROUND: The term "developmental disability" (DD) is inconsistently defined and applied depending on purpose and across sources, including in legislation. OBJECTIVE: This project aimed to identify existing definitions of disability and DD and to determine the extent to which each definition could be operationalized to produce prevalence estimates using data from U.S. national surveys. METHODS: Using data among children <18 years from the 2016-2018 National Health Interview Survey (NHIS) and National Survey of Children's Health (NSCH), we estimated the prevalence of two definitions of disability (Washington Group Short Set on Functioning, American Community Survey) and seven definitions of DD [Health and Human Services (ever/current), Developmental Disabilities Assistance and Bill of Rights Act of 2000 (1+, 2+, or 3+ components), and Diagnostic and Statistical Manual of Mental Disorders, 5th ed (ever/current)]. Complex sample design variables and weights were used to calculate nationally representative prevalence. RESULTS: Disability (NHIS: 5.2-6.3%; NSCH: 9.2-11.9%) and DD prevalence (NHIS: 0.6-18.0% and NSCH: 0.2-22.2%) varied depending on the definition and data source. For the same definition, NSCH prevalence estimates tended to be higher than NHIS estimates. CONCLUSIONS: The substantial variability in estimated prevalence of disability and DD among children in the United States may be in part due to the surveys not representing all components of each definition. Different or additional questions in national surveys may better capture existing definitions of disability and DD. Considering the data collection goals may help determine the optimal definition to provide useful information for public health action.

Effectiveness of the Original Monovalent Coronavirus Disease 2019 Vaccines in Preventing Emergency Department or Urgent Care Encounters and Hospitalizations Among Adults With Disabilities: VISION Network, June 2021-September 2022.

Adults with disabilities are at increased risk for severe coronavirus disease 2019 (COVID-19). Using data across 9 states during Delta- and Omicron-predominant periods (June 2021-September 2022), we evaluated the effectiveness of the original monovalent COVID-19 messenger RNA vaccines among 521 206 emergency department/urgent care encounters (11 471 [2%] in patients with a documented disability) and 139 548 hospitalizations (16 569 [12%] in patients with a disability) for laboratory-confirmed COVID-19 illness in adults (aged ≥18 years). Across variant periods and for the primary series or booster doses, vaccine effectiveness was similar in those with and those without a disability. These findings highlight the importance of adults with disabilities staying up to date with COVID-19 vaccinations.

Validation of an Enhanced Telehealth Platform for Toddlers at Increased Likelihood for a Diagnosis of Autism Spectrum Disorder (ASD).

Use of telehealth assessments for toddlers at increased likelihood of autism spectrum disorder (ASD) began prior to the global COVID-19 pandemic; however, the value of telehealth assessments as an alternative to in-person assessment (IPA) became clearer during the pandemic. The Naturalistic Observation Diagnosis Assessment (NODA™), previously demonstrated as a valid and reliable tool to evaluate asynchronous behaviors for early diagnosis, was enhanced to add synchronous collection of behaviors to assist clinicians in making a differential diagnosis of ASD. This study was conducted to validate the information gathered through NODA-Enhanced (NODA-E™) as compared to a gold standard IPA. Forty-nine toddlers aged 16.0-32.1 months of age, recruited through community pediatric offices and a tertiary ASD clinic, participated in both NODA-E and IPA assessments. There was high agreement between the two assessment protocols for overall diagnosis (46 of 49 cases; 93.6%; κ = .878), specific diagnostic criteria for social communication and social interaction (SCI; range 95.9-98%; κ = .918-.959), and for two of four criteria specified for restricted and repetitive behaviors (RRB; range 87.8-98%; κ = .755 and .959). There was lower agreement for two subcategories of RRBs (range 65.3-67.3%; κ = .306 and .347). NODA-E is a tool that can assist clinicians in making reliable and valid early ASD diagnoses using both asynchronous and synchronous information gathered via telehealth and offers an additional tool within a clinician's assessment toolbox.

Inequities in COVID-19 vaccination coverage for adolescents with and without disability, national immunization Survey-Child COVID module, July 22, 2021-February 26, 2022.

BACKGROUND: Some people with disabilities are likely at increased risk of health impacts from coronavirus disease 2019 (COVID-19). OBJECTIVE: To describe parent-reported COVID-19 vaccination status of adolescents (aged 13-17 years) and parental intent to get their child vaccinated, among adolescents with versus without disability. METHODS: National Immunization Survey-Child COVID Module data from interviews conducted July 22, 2021-February 26, 2022, were analyzed to assess disability status and type and COVID-19 vaccination status for adolescents (n = 12,445). Prevalence estimates with 95% confidence intervals were calculated; T-tests were conducted. RESULTS: A lower percentage of adolescents with disability received ≥1 dose of COVID-19 vaccine compared to adolescents without disability (52.5% vs. 58.6%), [those with cognition (50.8%) or not performing errands independently (49.5%) disabilities were significantly lower]; and a higher percentage of parents reported intent to definitely vaccinate (9.9% vs. 6.5%) and definitely not vaccinate (14.9% vs. 11.8%) their adolescent. Among the unvaccinated adolescents, parents of those with disability were more likely to report difficulty getting their child vaccinated (19.1% vs. 12.9%), inconvenient vaccination-site operating hours (7.6% vs. 3.9%), difficulty knowing where to get their child vaccinated (7.2% vs. 2.7%), and difficulty getting to vaccination sites (6.0% vs. 3.0%), than parents of those without disability. CONCLUSIONS: Adolescents with disability had lower vaccination coverage compared to adolescents without disability. Parents of adolescents with disability reported higher intent to get their adolescents vaccinated, but among unvaccinated adolescents with disability, parents reported greater difficulty in accessing COVID-19 vaccines. Findings highlight the need for prioritized outreach to increase COVID-19 vaccination for this population.

Health Needs and Use of Services Among Children with Developmental Disabilities - United States, 2014-2018.

Developmental delays, disorders, or disabilities (DDs) manifest in infancy and childhood and can limit a person's function throughout life* (1-3). To guide strategies to optimize health for U.S. children with DDs, CDC analyzed data from 44,299 participants in the 2014-2018 National Health Interview Survey (NHIS). Parents reported on 10 DDs,† functional abilities, health needs, and use of services. Among the approximately one in six (17.3%) U.S. children and adolescents aged 3-17 years (hereafter children) with one or more DDs, 5.7% had limited ability to move or play, 4.7% needed help with personal care, 4.6% needed special equipment, and 2.4% received home health care, compared with ≤1% for each of these measures among children without DDs. Children with DDs were two to seven times as likely as those without DDs to have taken prescription medication for ≥3 months (41.6% versus 8.4%), seen a mental health professional (30.6% versus 4.5%), a medical specialist (26.0% versus 12.4%), or a special therapist, such as a physical, occupational, or speech therapist, (25.0% versus 4.5%) during the past year, and 18 times as likely to have received special education or early intervention services (EIS) (41.9% versus 2.4%). These percentages varied by type of disability and by sociodemographic subgroup. DDs are common, and children with DDs often need substantial health care and services. Policies and programs that promote early identification of children with developmental delays and facilitate increased access to intervention services can improve health and reduce the need for services later in life.§ Sociodemographic inequities merit further investigation to guide public health action and ensure early and equitable access to needed care and services.

Disparities in COVID-19 Vaccination Status, Intent, and Perceived Access for Noninstitutionalized Adults, by Disability Status - National Immunization Survey Adult COVID Module, United States, May 30-June 26, 2021.

Estimates from the 2019 American Community Survey (ACS) indicated that 15.2% of adults aged ≥18 years had at least one reported functional disability (1). Persons with disabilities are more likely than are those without disabilities to have chronic health conditions (2) and also face barriers to accessing health care (3). These and other health and social inequities have placed persons with disabilities at increased risk for COVID-19-related illness and death, yet they face unique barriers to receipt of vaccination (4,5). Although CDC encourages that considerations be made when expanding vaccine access to persons with disabilities,* few public health surveillance systems measure disability status. To describe COVID-19 vaccination status and intent, as well as perceived vaccine access among adults by disability status, data from the National Immunization Survey Adult COVID Module (NIS-ACM) were analyzed. Adults with a disability were less likely than were those without a disability to report having received ≥1 dose of COVID-19 vaccine (age-adjusted prevalence ratio [aPR] = 0.88; 95% confidence interval [CI] = 0.84-0.93) but more likely to report they would definitely get vaccinated (aPR = 1.86; 95% CI = 1.43-2.42). Among unvaccinated adults, those with a disability were more likely to report higher endorsement of vaccine as protection (aPR = 1.29; 95% CI = 1.16-1.44), yet more likely to report it would be or was difficult to get vaccinated than did adults without a disability (aPR = 2.69; 95% CI = 2.16-3.34). Reducing barriers to vaccine scheduling and making vaccination sites more accessible might improve vaccination rates among persons with disabilities.

Spending on Young Children With Autism Spectrum Disorder in Employer-Sponsored Plans, 2011-2017.

OBJECTIVE: Rapid increases in the prevalence of autism spectrum disorder (ASD) and increased access to intensive behavioral interventions have likely increased health care spending. This study estimated recent changes in spending among privately insured children with and without current ASD. METHODS: A repeated cross-sections analysis of 2011-2017 claims data from large-employer-sponsored health plans assessed changes in annual expenditures by service type for children ages 3-7 enrolled for ≥1 year and with two or more claims with ASD billing codes within a calendar year and for all other children. RESULTS: Mean spending per child with a current-year ASD diagnosis increased by 51% in 2017 U.S. dollars, from roughly $13,000 in 2011 to $20,000 in 2017. Among children who did not meet the current-year ASD case definition, per-child spending increased by 8%. Spending on children with ASD accounted for 41% of spending growth for children ages 3-7 during 2011-2017. Outpatient behavioral intervention-related spending per child with ASD increased by 376%, from $1,746 in 2011 to $8,317 in 2017; spending on all other services increased by 2%. Their share of behavioral intervention-related spending increased from 13.2% in 2011 to 41.7% in 2017. In 2011, 2.5% of children with current-year ASD diagnoses incurred ≥$20,000 in outpatient behavioral intervention-related spending, which increased to 14.4% in 2017. CONCLUSIONS: During 2011-2017, spending increased six times as much for privately insured children ages 3-7 with current-year ASD as for children without ASD, largely from increased behavioral intervention-related spending. One in seven children received at least $20,000 in services in 2017.

The Role of Diagnostic Instruments in Dual and Differential Diagnosis in Autism Spectrum Disorder Across the Lifespan.

The heterogeneity inherent in autism spectrum disorder (ASD) makes the identification and diagnosis of ASD complex. We survey a large number of diagnostic tools, including screeners and tools designed for in-depth assessment. We also discuss the challenges presented by overlapping symptomatology between ASD and other disorders and the need to determine whether a diagnosis of ASD or another diagnosis best explains the individual's symptoms. We conclude with a call to action for the next steps necessary for meeting the diagnostic challenges presented here to improve the diagnostic process and to help understand each individual's particular ASD profile.

Diagnosis of Autism Spectrum Disorder Across the Lifespan.

Although autism spectrum disorder (ASD) is one of the most common neurodevelopmental disorders it is also one of the most heterogeneous conditions, making identification and diagnosis complex. The importance of a stable and consistent diagnosis cannot be overstated. An accurate diagnosis is the basis for understanding the individual and establishing an individualized treatment plan. We present those elements that should be included in any assessment for ASD and describe the ways in which ASD typically manifests itself at various developmental stages. The implications and challenges for assessment at different ages and levels of functioning are discussed.

Diagnosis of Autism Spectrum Disorder Across the Lifespan.

Although autism spectrum disorder (ASD) is one of the most common neurodevelopmental disorders it is also one of the most heterogeneous conditions, making identification and diagnosis complex. The importance of a stable and consistent diagnosis cannot be overstated. An accurate diagnosis is the basis for understanding the individual and establishing an individualized treatment plan. We present those elements that should be included in any assessment for ASD and describe the ways in which ASD typically manifests itself at various developmental stages. The implications and challenges for assessment at different ages and levels of functioning are discussed.

The Role of Diagnostic Instruments in Dual and Differential Diagnosis in Autism Spectrum Disorder Across the Lifespan.

The heterogeneity inherent in autism spectrum disorder (ASD) makes the identification and diagnosis of ASD complex. We survey a large number of diagnostic tools, including screeners and tools designed for in-depth assessment. We also discuss the challenges presented by overlapping symptomatology between ASD and other disorders and the need to determine whether a diagnosis of ASD or another diagnosis best explains the individual's symptoms. We conclude with a call to action for the next steps necessary for meeting the diagnostic challenges presented here to improve the diagnostic process and to help understand each individual's particular ASD profile.

Meaning in Measurement: Evaluating Young Autistic Adults' Active Engagement and Expressed Interest in Quality-of-Life Goals.

The need for support programs and meaningful measurement of outcomes with autistic adults is growing. To date, success in autism intervention has been defined based on changes in discretely defined, observable behaviors with limited consideration of the person's experience, motivations, or the complex contexts in which these skills are used. Behavioral skill-building interventions are effective at increasing or decreasing specific behaviors, but a purely behavioral focus is not enough for meaningful improvements in adult quality of life (QoL). To reflect real-life impact, intervention and measurement must go beyond quantitative estimates of changes in skills regardless of context of use and focus on enhancing and evaluating functional outcomes and adult QoL that includes active engagement with the adult and provides rigor in qualitative evaluation. This article reports on efforts to assess active engagement of verbally fluent young autistic adults in a supported university-based residential pilot program built around self-set wellness goals for healthy, engaged, responsible, and empowered adult living. Program evaluation used an exploratory process for evaluating QoL learning, while also being open to how future work can discern participant meanings in measurement. The pilot used a mixed-methods approach to measure entry skills and interests, codetermine personal wellness goals, inform program content with participants, and measure QoL learning in terms of active engagement, expressed interest, and changes in self-appraisal of competence, confidence, and identity. Participants' QoL learning, replication of QoL learning measurement methods, and further exploration of strategies to put participant meanings in QoL learning measurement are discussed. Lay summary: Why was this study done?: This study piloted a measurement strategy for deciding what to measure and support in real-world contexts of independent living and on-campus experiences in a 3-week residential program for young autistic adults.What was the purpose of this study?: The study aimed to measure and support autistic adults' quality of life (QoL) learning in terms of the extent to which pursuing self-set wellness goals, with supports, positively impacted autistic adults' active engagement (e.g., participation in wellness activities), and expressed interest (e.g., willingness to participate).Why was this program developed?: The program was developed because more young adults on the spectrum are aging into adulthood without personalized, respectful, and meaningful supports to promote engaged adult living. We wanted to build on our experience and feedback from autistic adults, family, and partners who have engaged in weekly social engagement groups on a university campus and called for more comprehensive transition programs.What did the program do?: The project was a pilot of an on-campus program aimed at facilitating personally meaningful improvements in QoL through empowering autistic adults to act on their personal motivations, interests, and goals. It also emphasized learning through experiences in real-life contexts, in collaboration with other participants, campus resources, community members, and program staff.How did the researchers evaluate the new program?: The program team used both quantitative and qualitative methods. Quantitative methods included standard self-report tools that autistic adults used to rate their safety needs, adult self-direction skills, autism-related self-concept, priority of self-set wellness goals, and confidence in abilities to achieve and learn more about one's own wellness goals. Predetermined qualitative methods included analysis of themes from participants' narrative data from their wellness interviews with participants and open-response items from self-report tools. The program was also responsive through a preprogram wellness interview with parents, staff's field notes about of participants' behaviors, conversational interactions with participants, and team discussions. Researchers contextualized and synthesized the data into narrative case studies about each participant's wellness journey.What were the early findings and what do they add to what was already known?: Results showed that the program was able to facilitate participants' QoL learning in personal wellness goals in collaboration with campus and community resources. Participants expressed meaningful changes in their expressed interests, active engagement, and self-concept through participating in this brief residential on-campus program.What are potential weaknesses of this pilot?: Weaknesses included a short time period of 3 weeks, a small participant count of 5, and the resource-intense supports needed for the program.What are the next steps?: The next steps are to adjust the program based on participant feedback and pursue creation of a multiyear program to continue piloting the measurement and support strategies for facilitating autistic adults' active wellness engagement and self-determined independent living.How will these findings and this work help autistic adults now or in the future?: This work informs future wellness interventions for measuring and supporting autistic adults' efforts to self-determine meaningful changes to their QoL.

DSM-5 criteria for autism spectrum disorder maximizes diagnostic sensitivity and specificity in preschool children.

PURPOSE: The criteria for autism spectrum disorder (ASD) were revised in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM). The objective of this study was to compare the sensitivity and specificity of DSM-IV-Text Revision (DSM-IV-TR) and DSM-5 definitions of ASD in a community-based sample of preschool children. METHODS: Children between 2 and 5 years of age were enrolled in the Study to Explore Early Development-Phase 2 (SEED2) and received a comprehensive developmental evaluation. The clinician(s) who evaluated the child completed two diagnostic checklists that indicated the presence and severity of DSM-IV-TR and DSM-5 criteria. Definitions for DSM-5 ASD, DSM-IV-TR autistic disorder, and DSM-IV-TR Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) were created from the diagnostic checklists. RESULTS: 773 children met SEED2 criteria for ASD and 288 met criteria for another developmental disorder (DD). Agreement between DSM-5 and DSM-IV-TR definitions of ASD were good for autistic disorder (0.78) and moderate for PDD-NOS (0.57 and 0.59). Children who met DSM-IV-TR autistic disorder but not DSM-5 ASD (n = 71) were more likely to have mild ASD symptoms, or symptoms accounted for by another disorder. Children who met PDD-NOS but not DSM-5 ASD (n = 66), or vice versa (n = 120) were less likely to have intellectual disability and more likely to be female. Sensitivity and specificity were best balanced with DSM-5 ASD criteria (0.95 and 0.78, respectively). CONCLUSIONS: The DSM-5 definition of ASD maximizes diagnostic sensitivity and specificity in the SEED2 sample. These findings support the DSM-5 conceptualization of ASD in preschool children.

Trends in Special Education Eligibility Among Children With Autism Spectrum Disorder, 2002-2010.

OBJECTIVE: Although data on publicly available special education are informative and offer a glimpse of trends in autism spectrum disorder (ASD) and use of educational services, using these data for population-based public health monitoring has drawbacks. Our objective was to evaluate trends in special education eligibility among 8-year-old children with ASD identified in the Autism and Developmental Disabilities Monitoring Network. METHODS: We used data from 5 Autism and Developmental Disabilities Monitoring Network sites (Arizona, Colorado, Georgia, Maryland, and North Carolina) during 4 surveillance years (2002, 2006, 2008, and 2010) and compared trends in 12 categories of special education eligibility by sex and race/ethnicity. We used multivariable linear risk regressions to evaluate how the proportion of children with a given eligibility changed over time. RESULTS: Of 6010 children with ASD, more than 36% did not receive an autism eligibility in special education in each surveillance year. From surveillance year 2002 to surveillance year 2010, autism eligibility increased by 3.6 percentage points ( P = .09), and intellectual disability eligibility decreased by 4.6 percentage points ( P < .001). A greater proportion of boys than girls had an autism eligibility in 2002 (56.3% vs 48.8%). Compared with other racial/ethnic groups, Hispanic children had the largest increase in proportion with autism eligibility from 2002 to 2010 (15.4%, P = .005) and the largest decrease in proportion with intellectual disability (-14.3%, P = .004). CONCLUSION: Although most children with ASD had autism eligibility, many received special education services under other categories, and racial/ethnic disparities persisted. To monitor trends in ASD prevalence, public health officials need access to comprehensive data collected systematically, not just special education eligibility.

Reported Wandering Behavior among Children with Autism Spectrum Disorder and/or Intellectual Disability.

OBJECTIVE: To characterize wandering, or elopement, among children with autism spectrum disorder (ASD) and intellectual disability. STUDY DESIGN: Questions on wandering in the previous year were asked of parents of children with ASD with and without intellectual disability and children with intellectual disability without ASD as part of the 2011 Survey of Pathways to Diagnosis and Services. The Pathways study sample was drawn from the much larger National Survey of Children with Special Health Care Needs conducted in 2009-2010. RESULTS: For children with special healthcare needs diagnosed with either ASD, intellectual disability, or both, wandering or becoming lost during the previous year was reported for more than 1 in 4 children. Wandering was highest among children with ASD with intellectual disability (37.7%) followed by children with ASD without intellectual disability (32.7%), and then children with intellectual disability without ASD (23.7%), though the differences between these groups were not statistically significant. CONCLUSIONS: This study affirms that wandering among children with ASD, regardless of intellectual disability status, is relatively common. However, wandering or becoming lost in the past year was also reported for many children with intellectual disability, indicating the need to broaden our understanding of this safety issue to other developmental disabilities.

Retention of autism spectrum disorder diagnosis: The role of co-occurring conditions in males and females.

This study examined associations between ASD diagnosis retention and non-ASD co-occurring conditions (CoCs) by child sex. The sample included 7077 males and 1487 females who had an ASD diagnosis documented in their school or health records in a population-based ASD surveillance system for 8-year-old children. ASD diagnosis retention status was determined when an initial ASD diagnosis was not later ruled out by a community professional. We found that ASD diagnosis remains fairly stable, with only 9% of children who had an initial documented ASD diagnosis later being ruled-out. Although most of the associations between the ASD diagnosis retention status and CoCs are similar in both sexes, the co-occurrence of developmental diagnoses (e.g., intellectual disability or sensory integration disorder) was predictive of ASD diagnostic changes in males, whereas the co-occurrence of specific developmental (e.g., personal/social delay) and neurological diagnosis (e.g., epilepsy) was associated with ASD diagnostic change in females. More ASD-related evaluations and less ASD-related impairment were associated with later ASD rule outs in both sexes. Our findings highlight that CoCs can complicate the diagnostic picture and lead to an increased likelihood of ambiguity in ASD diagnosis. Using sensitive and appropriate measures in clinical practice is necessary for differential diagnosis, particularly when there are co-occurring developmental conditions.