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1.
J Epidemiol Glob Health ; 14(1): 223-233, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38498114

ABSTRACT

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.


Subject(s)
Disabled Persons , HIV Infections , Violence , Humans , Male , Adolescent , Female , Lesotho/epidemiology , Disabled Persons/statistics & numerical data , Young Adult , Prevalence , HIV Infections/epidemiology , Violence/statistics & numerical data
2.
Vaccine ; 2024 Jan 23.
Article in English | MEDLINE | ID: mdl-38267333

ABSTRACT

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

3.
Disabil Health J ; 17(2): 101556, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38001004

ABSTRACT

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.


Subject(s)
Developmental Disabilities , Disabled Persons , Child , Humans , Adolescent , United States , Developmental Disabilities/epidemiology , Public Health , Surveys and Questionnaires , Prevalence , Health Surveys
4.
Open Forum Infect Dis ; 10(11): ofad474, 2023 Nov.
Article in English | MEDLINE | ID: mdl-37965644

ABSTRACT

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.

5.
J Autism Dev Disord ; 2023 Sep 23.
Article in English | MEDLINE | ID: mdl-37740876

ABSTRACT

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.

6.
Disabil Health J ; 16(4): 101509, 2023 10.
Article in English | MEDLINE | ID: mdl-37558552

ABSTRACT

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.


Subject(s)
COVID-19 , Disabled Persons , Adolescent , Humans , COVID-19 Vaccines , Vaccination Coverage , COVID-19/prevention & control , Vaccination , Immunization , Parents
7.
J Pharmacol Exp Ther ; 385(2): 95-105, 2023 05.
Article in English | MEDLINE | ID: mdl-36849411

ABSTRACT

Leucine-rich repeat-containing G-protein-coupled receptor (LGR5) and LGR6 mark epithelial stem cells in normal tissues and tumors. They are expressed by stem cells in the ovarian surface and fallopian tube epithelia from which ovarian cancer arises. High-grade serous ovarian cancer is unique in expressing unusually high levels of LGR5 and LGR6 mRNA. R-spondins are the natural ligands for LGR5 and LGR6 to which they bind with nanomolar affinity. To target stem cells in ovarian cancer, we used the sortase reaction to site-specifically conjugate the potent cytotoxin monomethyl auristatin E (MMAE) via a protease sensitive linker to the two furin-like domains of RSPO1 (Fu1-Fu2) that mediate its binding to LGR5 and LGR6 and their co-receptors Zinc And Ring Finger 3 and Ring Finger Protein 43 via a protease-cleavable linker. An immunoglobulin Fc domain added to the N-terminal end served to dimerize the receptor-binding domains so that each molecule carries two MMAE. The resulting molecule, FcF2-MMAE, demonstrated: 1) selective LGR5-dependent low nanomolar cytotoxicity against ovarian cancer cells in vitro; 2) selectivity that was dependent on binding to both the LGR receptors and ubiquitin ligase co-receptors; 3) favorable stability and plasma pharmacokinetic properties when administered intravenously with an elimination half-life of 29.7 hours; 4) selective inhibition of LGR5-rich as opposed to isogenic LGR5-poor tumors in vivo; and, 5) therapeutic efficacy in three aggressive wild-type human ovarian cancer xenograft models. These results demonstrate the successful use of the Fu1-Fu2 domain of RSPO1 as a drug carrier and the ability of FcF2-MMAE to target cells in tumors that express stem cell markers. SIGNIFICANCE STATEMENT: FcF2-MMAE is a novel cancer therapeutic that exploits the high-affinity binding domains of RSPO1 to target monomethyl auristatin E to tumor stem cells that express LGR5. FcF2-MMAE has low nanomolar LGR5-dependent cytotoxicity in vitro, favorable pharmacokinetics, and differential efficacy in an isogenic LGR5-poor versus LGR5-rich ovarian cancer xenograft model when given on a weekly schedule.


Subject(s)
Ovarian Neoplasms , Receptors, G-Protein-Coupled , Female , Humans , Leucine , Ovarian Neoplasms/drug therapy , Peptide Hydrolases , Receptors, G-Protein-Coupled/genetics , Receptors, G-Protein-Coupled/metabolism , Stem Cells/metabolism , Thrombospondins/metabolism
8.
J Autism Dev Disord ; 53(5): 1739-1754, 2023 May.
Article in English | MEDLINE | ID: mdl-35212866

ABSTRACT

The study examined timing of autism spectrum disorder (ASD) identification in education versus health settings for 8-year-old children with ASD identified through records-based surveillance. The study also examined type of ASD symptoms noted within special education evaluations. Results indicated that children with records from only education sources had a median time to identification of ASD over a year later than children with records from health sources. Black children were more likely than White children to have records from only education sources. Restricted and repetitive behaviors were less frequently documented in educational evaluations resulting in developmental delay eligibility compared to specific ASD eligibility among children with ASD. Future research could explore strategies reduce age of identification in educational settings and increase equitable access to health evaluations.


Subject(s)
Autism Spectrum Disorder , Child Development Disorders, Pervasive , Humans , Child , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/epidemiology , Population Surveillance/methods , Prevalence , Child Development Disorders, Pervasive/diagnosis , Education, Special
9.
MMWR Morb Mortal Wkly Rep ; 71(24): 791-796, 2022 Jun 17.
Article in English | MEDLINE | ID: mdl-35709015

ABSTRACT

Approximately 27% of adults in the United States live with a disability,* some of whom qualify for Medicare benefits. Persons with disabilities are at increased risk for severe COVID-19-associated outcomes compared with the general population (1); however, existing studies have limited generalizability† or only pertain to a specific disability (e.g., intellectual) (2). Older age is also associated with COVID-19-associated hospitalization and death, but the extent to which age might contribute to increased risk for severe COVID-19-associated outcomes among persons with disabilities is unknown (3). To describe the impact of COVID-19 on persons with disabilities and whether and how age contributes to disease rates, CDC assessed COVID-19 cases and hospitalizations during January 2020-November 2021, among Centers for Medicare & Medicaid Services (CMS) Medicare beneficiaries aged ≥18 years who were either eligible because of a disability (disability-eligible§) or only eligible because of age ≥65 years (age-eligible). COVID-19 incidence and hospitalization rates were higher in the disability-eligible group (10,978 and 3,148 per 100,000 population, respectively) throughout the study period compared with the age-eligible group (8,102 and 2,129 per 100,000 population, respectively). Both COVID-19 incidence and hospitalization rates increased with age in both disability- and age-eligible beneficiaries. American Indian or Alaska Native (AI/AN) persons had the highest disability-eligible (4,962 per 100,000) and age-eligible (5,024 per 100,000) hospitalization rates. Among all other racial and ethnic groups, hospitalization rates were higher among disability-eligible than among age-eligible patients. COVID-19 incidence and hospitalization rates among disability-eligible Medicare beneficiaries were disproportionally higher than rates among age-eligible beneficiaries. Collection of disability status as a core demographic variable in public health surveillance data and identification, as well as the addition of disability questions in other existing data sources can guide research and development of interventions for persons with disabilities. Efforts to increase access to and use of COVID-19 prevention and treatment strategies, including activities that support equitable vaccine access regardless of the substantial challenges that older adults and persons with disability face, are critical to reducing severe COVID-19-associated outcomes among these groups.


Subject(s)
COVID-19 , Disabled Persons , Adolescent , Adult , Aged , COVID-19/epidemiology , COVID-19/therapy , Hospitalization , Humans , Medicare , Racial Groups , United States/epidemiology
10.
MMWR Morb Mortal Wkly Rep ; 71(12): 453-458, 2022 Mar 25.
Article in English | MEDLINE | ID: mdl-35324879

ABSTRACT

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.


Subject(s)
Developmental Disabilities , Patient Acceptance of Health Care/statistics & numerical data , Adolescent , Child , Child, Preschool , Delivery of Health Care/statistics & numerical data , Early Intervention, Educational/statistics & numerical data , Education, Special/statistics & numerical data , Humans , Socioeconomic Factors , United States
11.
Autism ; 26(2): 562-563, 2022 02.
Article in English | MEDLINE | ID: mdl-34866424

ABSTRACT

The field of global autism research lost a pioneer, champion, and innovator with the passing of Dr Li-Ching Lee in May 2021. Dr Lee served as the editor for a special issue in Autism on global autism research (2017, Volume 21, Issue 5) and her substantial impact on autism research and autistic individuals and their families in low- and middle-income countries warrants a place in this special issue. While a giant in the professional arena, her large impact on science is minor compared to the compassion, kindness, and love she brought to her family, friends, and her professional communities at Johns Hopkins, across institutions, her native Taiwan, and the areas in which she conducted her research. Dr Lee was immensely humble and intensely focused on harnessing epidemiology to positively impact the lives of people with autism and developmental disabilities. Her humility and professional dedication was coupled with a desire to keep her own challenges and triumphs private including her courageous efforts to stave off cancer while accomplishing so much in support of others.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Ethnicity , Female , Humans , Mental Recall , Taiwan
12.
J Autism Dev Disord ; 52(1): 203-218, 2022 Jan.
Article in English | MEDLINE | ID: mdl-33666797

ABSTRACT

National Surveys of Children's Health (NSCH, 2016-2018) data were analyzed to determine if conjoint monitoring and screening showed stronger associations with children under 5 identified with ASD compared to monitoring alone, screening alone or no monitoring or screening; and investigate relationships between monitoring and screening across racial/ethnic subgroups. 86 of 332 children with ASD received their diagnosis in a timeframe suggesting potential monitoring and screening for identification purposes. Analyses showed that conjoint monitoring and screening and monitoring alone, but not screening alone, was associated with early identified ASD cases across race groups. Caution is warranted as interpreting NSCH monitoring and screening items solely for identification purposes is inaccurate in many cases. More research on monitoring with screening is needed.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Autism Spectrum Disorder/diagnosis , Autistic Disorder/diagnosis , Child , Ethnicity , Humans , Prevalence , Racial Groups
13.
Disabil Health J ; 15(1): 101179, 2022 01.
Article in English | MEDLINE | ID: mdl-34412986

ABSTRACT

BACKGROUND: Non-White children with developmental disabilities are frequently identified later than White children and therefore miss out on opportunities for early intervention (EI). Recent research indicates that conjoint monitoring and screening is more strongly associated with EI receipt than monitoring or screening alone. OBJECTIVE: To determine if there are racial/ethnic inequities in the conjoint receipt of monitoring and screening. METHOD: A series of survey weighted and stratified logistic regression analyses were conducted on National Surveys of Children's Health (2016-2018) data with conjoint monitoring and screening, screening alone, monitoring alone, and non-receipt as outcomes for children aged 9-23 months of age. The primary predictor was child race/ethnicity (Black, Hispanic, Other, and White). Additional co-variates included child (e.g., Age), caretaker/family (e.g., poverty level), healthcare (e.g., usual source of healthcare), state EI policies, and city metropolitan status. RESULTS: Bivariate analyses indicated significant variation in conjoint monitoring and screening across racial/ethnic groups and covariates. Bivariate analyses showed that Black and Hispanic children had significantly lower odds of conjoint monitoring and screening receipt than White children. Multivariate analyses showed that this relationship was better accounted by co-variates. The health service variable, usual source of healthcare, had the strongest relationship with receipt of conjoint monitoring and screening. CONCLUSIONS: Black and Hispanic children are less likely to receive conjoint monitoring and screening than White children. Analyses investigating the role of usual source of healthcare seem particularly promising for understanding the sources of inequities in monitoring and screening receipt.


Subject(s)
Disabled Persons , Ethnicity , Black People , Child , Hispanic or Latino , Humans , Infant , Poverty , United States
14.
MMWR Morb Mortal Wkly Rep ; 70(39): 1365-1371, 2021 Oct 01.
Article in English | MEDLINE | ID: mdl-34591826

ABSTRACT

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.


Subject(s)
COVID-19 Vaccines/administration & dosage , Disabled Persons/statistics & numerical data , Healthcare Disparities/statistics & numerical data , Vaccination/psychology , Vaccination/statistics & numerical data , Adolescent , Adult , Aged , COVID-19/epidemiology , COVID-19/prevention & control , Female , Health Care Surveys , Humans , Intention , Male , Middle Aged , United States/epidemiology , Young Adult
15.
Psychiatr Serv ; 72(1): 16-22, 2021 01 01.
Article in English | MEDLINE | ID: mdl-33076792

ABSTRACT

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.


Subject(s)
Autism Spectrum Disorder , Autism Spectrum Disorder/therapy , Behavior Therapy , Child , Child, Preschool , Family , Health Expenditures , Humans , Prevalence , United States
16.
Psychiatr Clin North Am ; 43(4): 605-628, 2020 12.
Article in English | MEDLINE | ID: mdl-33126998

ABSTRACT

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.

17.
Psychiatr Clin North Am ; 43(4): 583-603, 2020 12.
Article in English | MEDLINE | ID: mdl-33126997

ABSTRACT

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.

18.
Child Adolesc Psychiatr Clin N Am ; 29(2): 253-273, 2020 04.
Article in English | MEDLINE | ID: mdl-32169262

ABSTRACT

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.


Subject(s)
Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/physiopathology , Adolescent , Adult , Child , Child, Preschool , Humans , Infant , Young Adult
19.
Child Adolesc Psychiatr Clin N Am ; 29(2): 275-299, 2020 04.
Article in English | MEDLINE | ID: mdl-32169263

ABSTRACT

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.


Subject(s)
Anxiety Disorders/diagnosis , Attention Deficit Disorder with Hyperactivity/diagnosis , Autism Spectrum Disorder/diagnosis , Behavioral Symptoms/diagnosis , Intellectual Disability/diagnosis , Neuropsychological Tests , Adolescent , Adult , Anxiety Disorders/epidemiology , Attention Deficit Disorder with Hyperactivity/epidemiology , Autism Spectrum Disorder/epidemiology , Behavioral Symptoms/epidemiology , Child , Child, Preschool , Comorbidity , Diagnosis, Differential , Humans , Intellectual Disability/epidemiology
20.
Autism Adulthood ; 2(3): 227-242, 2020 Sep 01.
Article in English | MEDLINE | ID: mdl-36601444

ABSTRACT

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.

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