573 results on '"PEOPLE with intellectual disabilities"'
Search Results
2. Validation of an Adapted Version of the Glasgow Anxiety Scale for People with Intellectual Disabilities (GAS-ID).
- Author
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Maïano, Christophe, Morin, Alexandre J. S., Gagnon, Cynthia, Olivier, Elizabeth, Tracey, Danielle, Craven, Rhonda G., and Bouchard, Stéphane
- Subjects
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RESEARCH , *STRUCTURAL equation modeling , *WELL-being , *RESEARCH methodology evaluation , *SELF-perception , *RESEARCH methodology , *PSYCHOMETRICS , *GLASGOW Coma Scale , *LONELINESS , *RESEARCH funding , *PEOPLE with disabilities , *INTELLECTUAL disabilities ,RESEARCH evaluation - Abstract
The objective of the study was to validate adapted versions of the Glasgow Anxiety Scale for people with Intellectual Disabilities (GAS-ID) simultaneously developed in English and French. A sample of 361 youth with mild to moderate intellectual disability (ID) (M = 15.78 years) from Australia (English-speaking) and Canada (French-speaking) participated in this study. The results supported the factor validity and reliability, measurement invariance (between English and French versions), a lack of differential items functioning (as a function of youth's age and ID level, but not sex in the English-Australian sample), temporal stability (over one year interval), and convergent validity (with global self-esteem and school loneliness) of a bi-factor exploratory structural equation modeling representation of the GAS-ID. The present study supports the psychometric properties of the English-Australian and French-Canadian versions of the adapted GAS-ID. [ABSTRACT FROM AUTHOR]
- Published
- 2023
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3. The Aberrant Behavior Checklist in a Clinical Sample of Autistic Individuals with Intellectual Disabilities and Co-Occurring Mental Health Problems: Psychometric Properties, Factor Structure, and Longitudinal Measurement Invariance.
- Author
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Kildahl, Arvid Nikolai, Hellerud, Jane Margrete Askeland, Halvorsen, Marianne Berg, and Helverschou, Sissel Berge
- Subjects
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PEOPLE with intellectual disabilities , *MENTAL health services , *INTELLECTUAL disabilities , *MENTAL illness , *PEOPLE with disabilities - Abstract
The Aberrant Behavior Checklist (ABC) was originally developed to evaluate interventions, and is a well-established assessment tool for challenging behaviours in people with intellectual disabilities and autistic people. However, whether the ABC displays longitudinal measurement invariance (i.e., whether it captures the same constructs over time) has been sparsely explored. The aim of the current study is to explore the factor structure, longitudinal measurement invariance, and clinical correlates of the ABC in autistic individuals with intellectual disabilities. Using data from a multicentre study of mental health assessment and treatment in autistic people with intellectual disabilities, the intake ABC scores of 200 autistic individuals with intellectual disabilities were used to explore the ABC factor structure, internal consistency, and clinical correlates (age, gender, level of intellectual disability, autism characteristics, communication skills). Scores across three time points (intake, post-intervention, follow-up) were used to explore longitudinal measurement invariance and internal consistency over time. The original five-factor structure showed a non-optimal but acceptable fit, which was similar or slightly improved compared to previous studies. Associations for some ABC subscales were found to be positive for autism characteristics and negative for communication skills. Four of the five subscales (irritability, social withdrawal, stereotypic behaviour, inappropriate speech) showed residual levels of longitudinal measurement invariance, while one subscale showed noninvariance (hyperactivity/noncompliance). The current study demonstrates the construct validity and applicability of the ABC in autistic individuals with intellectual disabilities, while also indicating that caution is advised for one of its subscales in comparisons across time. [ABSTRACT FROM AUTHOR]
- Published
- 2025
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4. Schizophrenia in Autistic People with Intellectual Disabilities. Treatment and Interventions.
- Author
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Bakken, Trine Lise, Askeland Hellerud, Jane Margrete, Kildahl, Arvid Nikolai, Solheim-Inderberg, Ann Magritt, Hove, Oddbjørn, and Berge Helverschou, Sissel
- Abstract
Autistic people with intellectual disabilities appear to be at increased risk of schizophrenia. While current recommendations emphasize adapting interventions used for people with schizophrenia in general, few studies to date have investigated treatment of co-occurring schizophrenia in this specific population. To explore what interventions are provided to autistic people with intellectual disabilities and co-occurring schizophrenia in specialized mental health services, and to investigate whether changes in mental health symptoms and challenging behavior occurred during treatment. Using data from a longitudinal, national multicenter study, interventions provided to 26 autistic individuals with intellectual disabilities and co-occurring schizophrenia were explored. Symptoms were measured using the Psychopathology in Autism Checklist (PAC) and the Aberrant Behavior Checklist ABC) at referral (T1), at the end of treatment (T2), and at follow-up 12 months after T2 (T3). A broad range of interventions were provided to the participants, including inpatient admission, psychopharmacological treatment, various psychosocial interventions, and supportive interventions. Scores on the PAC and ABC were significantly lower at T2 than T1 for most scales, and no significant change was found from T2 to T3.Treatment of co-occurring schizophrenia appears feasible and effective in autistic people with intellectual disabilities. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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5. Feasibility and Tolerability of Daily Theta Burst Stimulation in Autistic Youth with Intellectual Disabilities and Minimally Speaking Status: A Pilot Double-Blind Randomized Sham-Controlled Trial.
- Author
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Ni, Hsing-Chang, Chen, Yi-Lung, and Lin, Hsiang-Yuan
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TRANSCRANIAL magnetic stimulation , *PEOPLE with intellectual disabilities , *AUTISTIC people , *PREFRONTAL cortex , *INTELLECTUAL disabilities - Abstract
Scarce clinical trials involving autistic people with intellectual disability (ID) and minimally speaking (MS) status have been a substantial unmet research need in the field. Although earlier studies have demonstrated the feasibility and beneficial potentials of repetitive transcranial magnetic stimulation (rTMS) over the dorsolateral prefrontal cortex (DLPFC) in intellectually able autistic people, the feasibility and tolerability of applying rTMS in autistic people with ID/MS has never been studied. We conducted the world-first 4-week randomized, double-blind, sham-controlled pilot trial to investigate the feasibility, tolerability, and safety of intermittent theta burst stimulation (iTBS, a variant of excitatory rTMS) over the left DLPFC in autistic youth with ID/MS. 25 autistic youth with ID/MS (aged 8–30 years) were randomized to a 20-session 4-week daily iTBS (
n = 13) vs. sham stimulation (n = 12) with follow-up 4 and 8 weeks, respectively, after the last stimulation. A retention rate was 100% in our study. Adverse events of local pain (38%) and dizziness (8%) were only noted in the active group. All adverse events were mild and transient. There were no seizures, new behavioral problems, or other severe/serious adverse events noted. No participants dropped out due to adverse events. With a small sample size, we did not find any beneficial signal of DLPFC iTBS. Our pilot data suggest regular daily TBS treatment for four weeks is feasible, well tolerated and safe in autistic youth with ID/MS. Future randomized controlled trials with sufficiently powered samples are needed to investigate the beneficial potential of rTMS/TBS for autistic people with ID/MS. [ABSTRACT FROM AUTHOR]- Published
- 2024
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6. Toward a Comprehensive Assessment of Relationships with Teachers and Parents for Youth with Intellectual Disabilities.
- Author
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Dubé, Céleste, Olivier, Elizabeth, Morin, Alexandre J. S., Tracey, Danielle, Craven, Rhonda G., and Maïano, Christophe
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TEACHER-student relationships , *PEOPLE with intellectual disabilities , *PARENT-child relationships - Abstract
This study proposes a multi-informant (youth, teachers, and parents) measure of relationship quality with adults for youth with intellectual disabilities (ID). A sample of 395 youth with mild (49.15%) and moderate (50.85%) ID, aged 11–22 (M = 15.82) was recruited in Canada (French-speaking, N = 142), and Australia (English-speaking, N = 253). Results support the reliability, factor validity, discriminant validity (in relation to sex, ID level, country, and comorbidity), convergent validity (depression, anxiety, aggressiveness, and prosocial behaviors), and one-year longitudinal stability of the measure. Youth self-reports provide a complementary perspective on relationship quality with adults relative to teachers' or parents' reports, whereas teachers and parents seem unable to differentiate their own perspective from that of the target youth. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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7. Completion of Upper Secondary Mainstream School in Autistic Students in Sweden.
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Stark, Isidora, Rast, Jessica E., Lundberg, Michael, Döring, Nora, Ohlis, Anna, Idring Nordström, Selma, Rai, Dheeraj, and Magnusson, Cecilia
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SECONDARY schools , *EDUCATION of people with intellectual disabilities , *STUDENTS with disabilities , *INTELLECTUAL disabilities , *ATTENTION-deficit hyperactivity disorder , *SECONDARY education - Abstract
Higher education is an increasingly necessary achievement to attain employment. However, even in cases where a student has the academic skills to succeed, educational environments may not support students across all other domains necessary for education success, including social and communication needs. This is especially true for students with disabilities and autistic students, where the rate of completion of non-compulsory education is unknown. We used the Stockholm Youth Cohort (children aged 0–17 years from 2001 to 2011), a total population cohort (
N = 736,180) including 3,918 autistic individuals, to investigate the association between autism without intellectual disability and completion of upper secondary education. We assessed the impact of sex and co-occurring Attention-Deficit/Hyperactivity Disorder (ADHD) on this association. By age 20 years (the expected age of completion), 68% of autistic students and 91% of non-autistic students admitted to upper secondary education had completed. In logistic regression models adjusted for student demographics, autistic students had almost five-fold higher odds of not completing secondary school (OR 4.90, 95% CI 4.56 5.26) compared to their non-autistic peers. Autistic students with ADHD had particularly high odds of non-completion of upper secondary school. Autistic students without intellectual disability attending mainstream education are substantially less likely to complete upper secondary education as compared to their peers. These findings have implications for the appraisal of how inclusive school policies serve autistic students’ academic and social needs, ultimately addressing population health and independent living. [ABSTRACT FROM AUTHOR]- Published
- 2024
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8. Mental and Behavioral Health, and Crisis Services for People with Intellectual and Developmental Disabilities in Medicaid Home- and Community-Based Services.
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Friedman, Carli and Luxama, Carine M.
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PEOPLE with intellectual disabilities , *PEOPLE with developmental disabilities , *MENTAL health services , *MENTAL health , *SAFETY-net health care providers , *BEHAVIORAL assessment - Abstract
People with intellectual and developmental disabilities (IDD) often have higher rates of comorbid mental health conditions compared to the general population. Yet, many people with IDD also have unmet needs for mental and behavioral health services. The aim of this study was to examine how states provided mental and behavior health, and crisis services to people with IDD in their Home- and Community-Based Services (HCBS) programs, the largest funding mechanism for Long-Term Services and Supports (LTSS) for people with IDD in the United States. We analyzed fiscal year (2021) Medicaid HCBS waivers for people with IDD from across the United States to examine if and how they provided mental and behavior health, and crisis services. States projected spending $968.9 million for mental and behavior health, and crisis services for 190,299 people with IDD. Applied behavior analysis services were provided at greater rates than positive behavior supports and other forms of behavior interventions. While most states provided mental and behavior health, and crisis services in their waivers, there were vast inconsistencies in how they did so, across states, waivers, and services. HCBS are a crucial safety net to ensure people with IDD, especially those who also have mental health disabilities, can live and thrive in their communities. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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9. Brief Report: Classifying Rates of Students with Autism and Intellectual Disability in North Carolina: Roles of Race and Economic Disadvantage.
- Author
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Howard, Jill, Copeland, J. Nathan, Gifford, Elizabeth J., Lawson, Jennifer, Bai, Yu, Heilbron, Nicole, and Maslow, Gary
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AUTISM , *PEOPLE with intellectual disabilities , *RACISM , *SPECIAL education , *STUDENTS , *SOCIOECONOMIC factors , *CROSS-sectional method , *DESCRIPTIVE statistics - Abstract
We examined special education classifications among students aged 3–21 in North Carolina public schools, highlighting autism spectrum disorder (ASD) and intellectual disability (ID). Results revealed variability by county in ASD and ID prevalence, and in county-level ratios of ID vs. ASD classifications. Sociodemographic characteristics predicted proportion of ASD or ID within a county; correlations showed an association between race and ID, but not ASD. County's median household income predicted proportion of students classified as ASD and ID (opposite directions), controlling for number of students and gender. Variability was unlikely related to biological incidence, and more likely related to district/school practices, or differences in resources. Disparities warrant further examination to ensure that North Carolina's youth with disabilities access necessary, appropriate resources. [ABSTRACT FROM AUTHOR]
- Published
- 2021
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10. Validation of a Revised Version of the Center for Epidemiologic Depression Scale for Youth with Intellectual Disabilities (CESD-ID-R).
- Author
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Olivier, Elizabeth, Lacombe, Corina, Morin, Alexandre J. S., Houle, Simon A., Gagnon, Cynthia, Tracey, Danielle, Craven, Rhonda G., and Maïano, Christophe
- Subjects
DIAGNOSIS of mental depression ,SPECIAL education ,RESEARCH evaluation ,RESEARCH methodology evaluation ,RESEARCH methodology ,SOCIAL isolation ,PSYCHOLOGY of high school students ,TEACHERS ,LONELINESS ,FACTOR analysis ,PEOPLE with intellectual disabilities ,ANXIETY ,PARENTS - Abstract
This study proposes a revision (R) of the Center for Epidemiologic Studies Depression Scale for youth with ID (CESD-ID) in English and French. 346 youth (36.02% girls) with mild (51.26%) and moderate (48.78%) ID (11–22 years; M = 15.69), enrolled in secondary schools in Canada (French-speaking; n = 115), and Australia (English-speaking; n = 231), as well as their parents and teachers, participated in this study. Results support the reliability, factor validity, equivalence (sex, ID level, comorbidities, and country), and convergent validity (with youth-, parent-, and teacher-rated measures of depression, anxiety, and loneliness/social isolation) of the CESD-ID-R. The CESD-ID-R allows youth with ID to provide a reliable and valid assessment of their depressive mood and happiness suitable for epidemiological studies. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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11. Do Social Networks Differ? Comparison of the Social Networks of People with Intellectual Disabilities, People with Autism Spectrum Disorders and Other People Living in the Community.
- Author
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Asselt-Goverts, A., Embregts, P., Hendriks, A., Wegman, K., and Teunisse, J.
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AUTISM , *CHI-squared test , *HUMAN rights , *INTERPERSONAL relations , *INTERVIEWING , *PEOPLE with intellectual disabilities , *SENSORY perception , *QUESTIONNAIRES , *SATISFACTION , *SOCIAL networks , *STATISTICS , *QUALITATIVE research , *DATA analysis , *INDEPENDENT living , *DATA analysis software - Abstract
The aim of this study was to determine the similarities and differences in social network characteristics, satisfaction and wishes with respect to the social network between people with mild or borderline intellectual disabilities (ID), people with autism spectrum disorders (ASD) and a reference group. Data were gathered from 105 young adults living independently in the community. The social networks of people with ID and ASD are more restricted than those of the reference group. Compared with the other groups, people with ASD are less often satisfied with their networks. Each group has its own characteristics, issues and wishes with respect to their social network. Practical measures to enable professionals to adapt to these issues are discussed. [ABSTRACT FROM AUTHOR]
- Published
- 2015
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12. A Distance-Delivered Social Skills Program for Young Adults with Williams Syndrome: Evaluating Feasibility and Preliminary Efficacy.
- Author
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Fisher, Marisa H., Kammes, Rebecca R., Black, Rhonda S., Houck, Kristin, and Cwiakala, Katie
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PARENT attitudes ,EVALUATION of human services programs ,CLINICAL trials ,HEALTH outcome assessment ,INTERVIEWING ,BEHAVIOR disorders ,SURVEYS ,PRE-tests & post-tests ,PATIENTS' attitudes ,WILLIAMS syndrome ,PEOPLE with intellectual disabilities ,SOCIAL disabilities ,SOCIAL skills education ,TELEMEDICINE - Abstract
Adults with Williams syndrome (WS) display hypersocial behaviors and experience social skills deficits. To improve social outcomes, we evaluated the feasibility, acceptability, and preliminary efficacy of an 8-week distance-delivered social skills program for adults with WS. Sessions were offered twice a week for 90 min. Twenty-four adults with WS were assigned to an intervention or waitlist control group. Outcomes were assessed through interviews and surveys with adults with WS, parents, and facilitators. The intervention was rated as acceptable and feasible by all. Parents rated adults with WS as displaying significant improvements in social skills; yet ratings by adults with WS did not change. Adults also displayed increased social skills knowledge following participation. Implications for practice and future research are discussed. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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13. Brief Report: Telehealth Satisfaction Among Caregivers of Pediatric and Adult Psychology and Psychiatry Patients with Intellectual and Developmental Disability in the Wake of Covid-19.
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Rosen, Victoria, Blank, Elizabeth, Lampert, Erica, Dominick, Kelli, Will, Meredith, Erickson, Craig, Pedapati, Ernest, Lamy, Martine, and Shaffer, Rebecca
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CAREGIVER attitudes ,HEALTH facilities ,TELEPSYCHIATRY ,DEVELOPMENTAL disabilities ,AUTISM ,PEOPLE with intellectual disabilities ,COVID-19 pandemic ,MENTAL illness ,TELEMEDICINE ,GROUP psychotherapy - Abstract
Telehealth has been shown to be both acceptable and effective in many areas of healthcare, yet it was not widely adopted prior to the SARS-CoV-2 (COVID-19) pandemic. Additionally, previous evaluations of telehealth for autism spectrum condition (ASC) and intellectual and developmental disability (IDD) populations are limited in both number and scope. Here, we investigated satisfaction amongst Psychology and Psychiatry patient caregivers at Cincinnati Children's Hospital Medical Center (CCHMC) after the onset of the COVID-19 pandemic. Results (640 responses) showed high rates of satisfaction across departments, appointment types, and diagnoses, with 92% indicating overall satisfaction with their appointment. There were, however, notable decreases in satisfaction among Group Therapy respondents, and those whose diagnosis was classified as Other. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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14. Parent-Reported Strengths and Positive Qualities of Adolescents and Adults with Autism Spectrum Disorder and/or Intellectual Disability.
- Author
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Wilkinson, Ellen, Vo, Le Thao Vy, London, Zoe, Wilson, Sherri, and Bal, Vanessa H.
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PERSONALITY ,PARENT attitudes ,AUTISM in adolescence ,QUALITATIVE research ,AUTISM ,PEOPLE with intellectual disabilities ,THEMATIC analysis ,SOCIAL skills - Abstract
Despite increasing attention to understanding strengths in those on the autism spectrum, few studies have explored this in older individuals. The present study provides a qualitative analysis of parent-reported strengths and positive qualities of 68 15–30-year-olds with autism and/or intellectual disability (ID). Most parents (97%) reported at least one positive quality. Themes were consistent with previous studies; Personality characteristics (82%) and Sociability (53%) were reported most frequently. A Work Ethic/Motivation category not previously reported emerged. Autistic individuals (with/without ID) were more likely than those with ID-only to have a Specific Skill. Findings highlight the importance of recognizing strengths of autistic adults. Research is needed to understand how to best leverage positive qualities to promote goal achievement and quality of life. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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15. Dual Language Learning Predicts Improved Executive Functioning in Youth with Autism.
- Author
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Ratto, Allison B., Reimann, Gabrielle, and Nadwodny, Nicole
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EXECUTIVE function ,MULTILINGUALISM ,HEALTH outcome assessment ,LEARNING ,SOCIOECONOMIC factors ,AUTISM in children ,PEOPLE with intellectual disabilities ,INTELLIGENCE tests - Abstract
Previous findings show executive functioning advantages associated with dual language learning (DLL) among neurotypical individuals, yet few studies have investigated these effects in youth with autism spectrum disorder (ASD). The present study investigated effects of DLL and socioeconomic status (SES) on parent-reported executive functioning, verbal ability, and social-emotional functioning using a sample of DLL (n = 53) and monolingual (n = 106) youth with ASD without intellectual disability, matched on gender and full-scale IQ scores. After controlling for the effects of SES, results showed that monolingual youth had better outcomes on verbal ability, while DLL youth had fewer parent-reported problems with executive functioning and unusual behaviors. These findings indicate that bilingualism may mitigate executive functioning deficits in youth with ASD. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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16. Inhibitory Control in Autism Spectrum Disorders: Meta-analyses on Indirect and Direct Measures.
- Author
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Tonizzi, Irene, Giofrè, David, and Usai, Maria Carmen
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EXECUTIVE function ,META-analysis ,AUTISM ,PEOPLE with intellectual disabilities ,COMORBIDITY - Abstract
This manuscript aimed to advance our understanding of inhibitory control (IC) in autism spectrum disorders (ASD), adopting a meta-analytic multilevel approach. The first meta-analysis, on 164 studies adopting direct measures, indicated a significant small-to-medium (g = 0.484) deficit in the group with ASD (n = 5140) compared with controls (n = 6075). Similar effect sizes between response inhibition and interference control were found, but they were differentially affected by intellectual functioning and age. The second meta-analysis, on 24 studies using indirect measures, revealed a large deficit (g = 1.334) in the group with ASD (n = 985) compared with controls (n = 1300). Presentation format, intellectual functioning, and age were significant moderators. The effect of comorbidity with ADHD was not statistically significant. Implications are discussed for IC research and practice in autism. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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17. Thinning Schedules of Reinforcement Following Functional Communication Training for Children with Intellectual and Developmental Disabilities: A Meta-analytic Review.
- Author
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Muharib, Reem, Alrasheed, Fahad, Ninci, Jennifer, Walker, Virginia L., and Voggt, Ashley P.
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EDUCATION of people with intellectual disabilities , *COMMUNICATION , *COMMUNICATION education , *DEVELOPMENTAL disabilities , *META-analysis , *REINFORCEMENT (Psychology) , *SYSTEMATIC reviews , *EFFECT sizes (Statistics) , *FUNCTIONAL training - Abstract
Functional communication training (FCT) is an evidence-based practice used to mitigate challenging behavior by increasing functional communication skills. To increase the practicality and feasibility of FCT in natural settings, thinning schedules of reinforcement are typically programmed following FCT. In this review, we meta-analyzed 28 studies that incorporated a thinning schedule procedure following FCT for 51 children with intellectual and developmental disabilities ages 8 and younger. Using Tau-U, the results demonstrated overall moderate effect sizes for both challenging behavior and functional communication responses. Additionally, moderator analyses pertaining to participant characteristics, interventions, and study quality were conducted. Thinning procedures were most effective for children who had stronger communication repertoire. Implications for future research and practice are discussed. [ABSTRACT FROM AUTHOR]
- Published
- 2019
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18. Fifteen-Year Prospective Follow-Up Study of Adult Outcomes of Autism Spectrum Disorders Among Children Attending Centers in Five Regional Departments in France: The EpiTED Cohort.
- Author
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Baghdadli, Amaria, Rattaz, Cécile, Michelon, Cécile, Pernon, Eric, and Munir, Kerim
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TREATMENT of autism , *PEOPLE with intellectual disabilities , *CHILD development , *COGNITION , *HEALTH services accessibility , *LANGUAGE & languages , *LONGITUDINAL method , *COMORBIDITY , *SOCIAL support , *CHILDREN , *THERAPEUTICS - Abstract
There is limited data on long-term outcome of ASD with co-occurring intellectual disabilities (ID) and challenging behaviours in France. The EpiTED period cohort is a 15 years longitudinal study of the developmental trajectories of 281 children initially recruited at mean age of 5 years. Two contrasted developmental trajectories were identified. Low cognitive level, absence of language, and higher ASD scores at baseline were predictive of low growth at follow-up. As adults the participants were predisposed to persistent co-occurring challenging behaviours as well as underlying ID impacting their ability to function independently. The results underscore the need for development of services and supports for adults with ASD in France who may also have already lacked access to adequate interventions and support services. [ABSTRACT FROM AUTHOR]
- Published
- 2019
- Full Text
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19. Cross-Disorder Analysis of De Novo Mutations in Neuropsychiatric Disorders.
- Author
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Li, Kuokuo, Fang, Zhenghuan, Zhao, Guihu, Li, Bin, Chen, Chao, Xia, Lu, Wang, Lin, Luo, Tengfei, Wang, Xiaomeng, Wang, Zheng, Zhang, Yi, Jiang, Yi, Pan, Qian, Hu, Zhengmao, Guo, Hui, Tang, Beisha, Liu, Chunyu, Sun, Zhongsheng, Xia, Kun, and Li, Jinchen
- Subjects
GENETIC mutation ,GENETICS ,PSYCHOSES ,SCHIZOPHRENIA ,NEUROBEHAVIORAL disorders ,GENE expression ,AUTISM ,DESCRIPTIVE statistics ,PEOPLE with intellectual disabilities ,MEDICAL coding ,PHENOTYPES - Abstract
The clinical similarity among different neuropsychiatric disorders (NPDs) suggested a shared genetic basis. We catalogued 23,109 coding de novo mutations (DNMs) from 6511 patients with autism spectrum disorder (ASD), 4,293 undiagnosed developmental disorder (UDD), 933 epileptic encephalopathy (EE), 1022 intellectual disability (ID), 1094 schizophrenia (SCZ), and 3391 controls. We evaluated that putative functional DNMs contribute to 38.11%, 34.40%, 33.31%, 10.98% and 6.91% of patients with ID, EE, UDD, ASD and SCZ, respectively. Consistent with phenotype similarity and heterogeneity in different NPDs, they show different degree of genetic association. Cross-disorder analysis of DNMs prioritized 321 candidate genes (FDR < 0.05) and showed that genes shared in more disorders were more likely to exhibited specific expression pattern, functional pathway, genetic convergence, and genetic intolerance. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
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20. Making Research Possible: Barriers and Solutions For Those With ASD and ID.
- Author
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Thurm, Audrey, Halladay, Alycia, Mandell, David, Maye, Melissa, Ethridge, Sarah, and Farmer, Cristan
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PATIENT participation ,CAREGIVERS ,HEALTH services accessibility ,HUMAN research subjects ,PATIENT selection ,AUTISM ,PEOPLE with intellectual disabilities ,HEALTH equity ,MEDICAL research - Abstract
Participation in research can provide direct and indirect benefit to individuals with autism spectrum disorder (ASD), their caregivers, families, and society at large. Unfortunately, individuals with high support needs, including those with intellectual disability, cognitive disability or minimal verbal ability, are often systematically excluded from research on ASD. This limits the ability to generalize discoveries to all people with ASD, and results in a disparity in who benefits from research. This piece outlines the importance and extent of the problem, which is part of a broader lack of inclusivity in ASD research. It also provides examples of studies that have directly addressed issues that arise when conducting inclusive research and makes recommendations for researchers to reduce disparities in research participation. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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21. Feasibility, Acceptability and Preliminary Efficacy of Dialectical Behavior Therapy for Autistic Adults without Intellectual Disability: A Mixed Methods Study.
- Author
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Bemmouna, Doha, Coutelle, Romain, Weibel, Sébastien, and Weiner, Luisa
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TREATMENT of autism ,SUICIDE prevention ,SUICIDE risk factors ,PATIENT aftercare ,CLINICAL trials ,RESEARCH methodology ,TREATMENT effectiveness ,PSYCHOLOGICAL tests ,DIALECTICAL behavior therapy ,AFFECTIVE disorders ,DESCRIPTIVE statistics ,PEOPLE with intellectual disabilities ,EMOTION regulation ,SELF-mutilation ,ADULTS - Abstract
Self-harm and suicidal behaviors are prevalent among autistic adults without intellectual disability (ID). Emotion dysregulation (ED), the difficulty in modulating emotions, has been identified as an important risk factor. Dialectical behavior therapy (DBT) has been proved effective to treat ED in disorders other than autism spectrum disorder. Our study aimed at assessing the feasibility, acceptability and preliminary efficacy of DBT in seven autistic adults without ID exhibiting self-harm and/or suicidal behaviors linked to severe ED. Our results suggest that DBT is feasible and highly acceptable to autistic adults without ID. Additionally, mean scores on the Difficulties in Emotion Regulation Scale decreased significantly post-treatment and at 4-month follow-up, suggesting that DBT might be efficacious in reducing ED in this population. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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22. Self-Determination in Autistic Transition-Aged Youth without Intellectual Disability.
- Author
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Tomaszewski, Brianne, Klinger, Laura G., and Pugliese, Cara E.
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EXECUTIVE function ,TRANSITION to adulthood ,STAKEHOLDER analysis ,COMMUNICATIVE competence ,HEALTH outcome assessment ,AUTISM in adolescence ,PATIENTS' attitudes ,AUTONOMY (Psychology) ,MENTAL depression ,DESCRIPTIVE statistics ,TEENAGERS' conduct of life ,PEOPLE with intellectual disabilities ,SOCIAL skills ,DATA analysis software - Abstract
Self-determination refers to an individual's capacity and opportunities to act as a causal agent in their own lives to make choices, decisions, and set goals. The current study examined self- and parent-reports of the AIR Self-Determination Scale in transition-aged autistic youth (Based on stakeholder preferences, we use identity-first(autistic) or neutral language (on the autism spectrum) (Bottema-Beutel in JAMA 3:18–29, 2020)). Autistic youth completed depression and executive function measures, and parents rated their child's social-communication and executive function difficulties. Despite differences between youth and parent reports, both youth and their parents reported lower self-determination skills (capacity) than opportunities to practice self-determined behaviors. Both depression and executive function skills were related to self-determination capacity, highlighting potential intervention targets for transition-aged youth to facilitate increased self-determination and potentially improved adult outcomes. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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23. Brief Report: Suspected Cannabis-Induced Mania and Psychosis in Young Adult Males with Autism Spectrum Disorder.
- Author
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Al-Soleiti, Majd, Balaj, Kayla, Thom, Robyn P., McDougle, Christopher J., and Keary, Christopher J.
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CLINICAL trials ,ELECTROENCEPHALOGRAPHY ,PSYCHOSES ,MEN ,MAGNETIC resonance imaging ,AUTISM ,MEDICAL history taking ,CANNABINOIDS ,CLASSIFICATION of mental disorders ,PEOPLE with intellectual disabilities ,MANIA ,ADULTS - Abstract
There is increasing interest in investigating cannabis for behavioral symptoms in individuals with autism spectrum disorder (ASD). The potential role of dysregulated cannabinoid signaling contributing to the pathophysiology of ASD is an area of active investigation. Results from retrospective and uncontrolled trials of cannabis in subjects with ASD have been published, reporting both potential benefits and adverse effects. Here, we describe the clinical course of three young adult males with ASD who developed mania or psychosis after the consistent use of cannabidiol and delta-9-tetrahydrocannabinol. Caution should be utilized with cannabis use in individuals with ASD until large-scale, replicated randomized controlled trials demonstrating efficacy, safety and tolerability have been published. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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24. Validation of Autism Diagnosis and Clinical Data in the SPARK Cohort.
- Author
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Fombonne, Eric, Coppola, Leigh, Mastel, Sarah, and O'Roak, Brian J.
- Subjects
DIAGNOSIS of autism ,CAREGIVERS ,SELF-evaluation ,RESEARCH methodology ,ACQUISITION of data ,REGRESSION analysis ,SEX distribution ,MEDICAL records ,DESCRIPTIVE statistics ,BIRTH weight ,PEOPLE with intellectual disabilities - Abstract
The SPARK cohort was established to facilitate recruitment in studies of large numbers of participants with autism spectrum disorder (ASD). Online registration requires participants to have received a lifetime professional diagnosis by health or school providers although diagnoses are not independently verified. This study was set to examine the validity of self- and caregiver-reported autism diagnoses. Electronic medical records (EMR) of 254 SPARK participants (77.6% male, age 10.7 years) were abstracted. Using two different methods, confirmation of ASD diagnosis in EMRs was obtained in 98.8% of cases. Core clinical features recorded in EMRs were typical of autism samples and showed very good agreement with SPARK cohort data, providing further evidence of the validity of clinical information in the SPARK database. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
25. National and State Trends in autistic Adult Supplemental Security Income Awardees: 2005–2019.
- Author
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Anderson, Kristy A., Hemmeter, Jeffrey, Wittenburg, David, Baller, Julia, Roux, Anne M., Rast, Jessica E., and Shattuck, Paul T.
- Subjects
HEALTH policy ,PATIENT participation ,AWARDS ,AGE distribution ,SOCIAL security ,INCOME ,AUTISM ,DESCRIPTIVE statistics ,PEOPLE with disabilities ,PEOPLE with intellectual disabilities ,POVERTY ,MENTAL illness ,ADULTS - Abstract
This paper used Social Security Administration program data from 2005 to 2019 to examine national- and state-level changes in the number of new adult supplemental security income (SSI) awardees on the autism spectrum relative to awardees with intellectual disability and other mental health disorders. We identified three main findings: the number of autistic awards increased between 2005 and 2019 when awards for all other mental health disorders declined; roughly nine out of every 10 autistic adult awardees were between ages 18–25 years; there was variation in the growth of autistic awards across states. These findings support the need to consider geographic and age differences in SSI program participation among autistic adults and determine the underlying causes. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
26. Cognitive Bias Modification Reduces Social Anxiety Symptoms in Socially Anxious Adolescents with Mild Intellectual Disabilities: A Randomized Controlled Trial.
- Author
-
Klein, Anke M., Salemink, Elske, de Hullu, Eva, Houtkamp, Esther, Papa, Marlissa, and van der Molen, Mariët
- Subjects
- *
COGNITIVE therapy , *PEOPLE with intellectual disabilities , *RANDOMIZED controlled trials , *SOCIAL anxiety - Abstract
The goal of this study was to examine the effects of Cognitive Bias Modification training for Interpretation (CBM-I) in socially anxious adolescents with Mild Intellectual Disabilities (MID). A total of 69 socially anxious adolescents with MID were randomly assigned to either a positive or a neutral control-CMB-I-training. Training included five sessions in a 3-week period, and each session consisted of 40 training items. Adolescents in the positive training group showed a significant reduction in negative interpretation bias on the two interpretation bias tasks after training compared to adolescents in the control-training group. Furthermore, in contrast to the control-training group, adolescents in the positive training reported a significant reduction of their social anxiety symptoms 10 weeks post-training. [ABSTRACT FROM AUTHOR]
- Published
- 2018
- Full Text
- View/download PDF
27. Scripted and Unscripted Science Lessons for Children with Autism and Intellectual Disability.
- Author
-
Knight, Victoria F., Collins, Belva, Spriggs, Amy D., Sartini, Emily, and MacDonald, Margaret Janey
- Subjects
- *
REHABILITATION for people with intellectual disabilities , *ACADEMIC achievement , *CURRICULUM , *ELEMENTARY schools , *STUDENTS with disabilities , *LONGITUDINAL method , *MAINSTREAMING in special education , *SCHOOL children , *SCIENCE , *SPECIAL education , *TEACHERS , *TEACHING aids , *TEACHING methods , *REHABILITATION of autistic people , *CHILDREN - Abstract
Both scripted lessons and unscripted task analyzed lessons have been used effectively to teach science content to students with intellectual disability and autism spectrum disorder. This study evaluated the efficacy, efficiency, and teacher preference of scripted and unscripted task analyzed lesson plans from an elementary science curriculum designed for students with intellectual disability and autism spectrum disorder by evaluating both lesson formats for (a) student outcomes on a science comprehension assessment, (b) sessions to criterion, and (c) average duration of lessons. Findings propose both lesson types were equally effective, but unscripted task analyzed versions may be more efficient and were preferred by teachers to scripted lessons. Implications, limitations, and suggestions for future research are also discussed. [ABSTRACT FROM AUTHOR]
- Published
- 2018
- Full Text
- View/download PDF
28. Diagnosing Autism in Adults with Intellectual Disability: Validation of the DiBAS-R in an Independent Sample.
- Author
-
Heinrich, Manuel, Böhm, Julia, and Sappok, Tanja
- Subjects
- *
DIAGNOSIS of autism , *PEOPLE with intellectual disabilities , *RESEARCH methodology evaluation , *ADULTS - Abstract
The study assessed the diagnostic validity of the diagnostic behavioral assessment for autism spectrum disorders-revised (DiBAS-R; 19-item screening scale based on ratings by caregivers) in a clinical sample of 381 adults with ID. Analysis revealed a sensitivity of 0.82 and a specificity of 0.67 in the overall sample (70.3% agreement). Sensitivity (0.79) and specificity (0.84) were balanced in individuals with mild to moderate ID (83.3% agreement), while specificity was lower in individuals with severe to profound ID (sensitivity: 0.83, specificity: 0.34, 51% agreement). The level of ID as well as its interaction with ASD explained a significant proportion of the variance in the DiBAS-R scores. The DiBAS-R is an adequate screening tool, especially in individuals with mild to moderate ID. [ABSTRACT FROM AUTHOR]
- Published
- 2018
- Full Text
- View/download PDF
29. Assessment of Autism Spectrum Disorder in Deaf Adults with Intellectual Disability: Feasibility and Psychometric Properties of an Adapted Version of the Autism Diagnostic Observation Schedule (ADOS-2).
- Author
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Holzinger, D., Weber, C., Bölte, S., Fellinger, J., and Hofer, J.
- Subjects
RELIABILITY (Personality trait) ,DEAFNESS ,RESEARCH methodology evaluation ,ONE-way analysis of variance ,SIGN language ,PSYCHOMETRICS ,AUTISM ,CHI-squared test ,DESCRIPTIVE statistics ,PEOPLE with intellectual disabilities - Abstract
This study describes the adaptation of the autism diagnostic observation schedule (ADOS-2) to assess autism spectrum disorder (ASD) in adults with intellectual disability (ID) and hearing loss who communicate primarily visually. This adapted ADOS-2 was applied to residents of specialized therapeutic living communities (n = 56). The internal consistency of the adapted ADOS-2 was excellent for the Social Affect of modules 2 and 3 and acceptable for Restricted and Repetitive Behaviors subscale of module 2, but poor for module 3. Interrater reliability was comparable to standard ADOS-2 modules 1–3. Results suggest that autism symptoms of deaf adults with ID can be reliably identified by an adapted ADOS-2, provided adequate expertise in deafness, ID, ASD and proficiency in signed language by the administrator. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
30. Predictors of the Quality of Life of Informal Carers of Adults on the Autism Spectrum.
- Author
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Sonido, Marisse T., Hwang, Ye In, Srasuebkul, Preeyaporn, Trollor, Julian N., and Arnold, Samuel R. C.
- Subjects
WELL-being ,CAREGIVERS ,AGE distribution ,MATHEMATICAL models ,UNCERTAINTY ,QUALITY of life ,AUTISM ,THEORY ,MENTAL depression ,DESCRIPTIVE statistics ,WORRY ,PEOPLE with intellectual disabilities ,PSYCHOLOGICAL stress - Abstract
Carers of adults on the autism spectrum often experience high levels of stress, worry, and caregiver burden. There are few studies identifying the predictors of carer mental well-being and none have been conducted in Australia. Data from the Autism Cooperative Research Centre for Living with Autism's Australian Longitudinal Study of Autism in Adulthood was used to test the conceptual model by Sonido et al. (Rev J Autism Dev Disord, 2019, https://doi.org/10.1007/s40489-019-00177-8) by (a) identifying the predictors of mental well-being for carers of adults on the spectrum, (b) using model selection to determine which predictors contribute to the model of best fit, and (c) testing for mediating relationships between the predictors. Several predictors were directly associated with carer psychological quality of life, including carer age, care recipient intellectual disability, and carer intolerance of uncertainty. Model selection strongly supported the inclusion of most clusters from the conceptual model. Some mediating relationships were found, such as care recipient depressive behaviours mediating the relationships between caregiver burden and psychological quality of life. Future studies of the conceptual model will improve understanding of the predictors of carer mental well-being and enable tailored interventions to improve the psychological health of carers of adults on the autism spectrum. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
31. Symptom Severity, Internalized and Externalized Behavioral and Emotional Problems: Links with Parenting Stress in Mothers of Children Recently Diagnosed with Autism.
- Author
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Mello, Catherine, Rivard, Mélina, Morin, Diane, Patel, Shaneha, and Morin, Marjorie
- Subjects
DIAGNOSIS of autism ,PARENTS of children with disabilities ,PSYCHOLOGY of mothers ,CHILD behavior ,SEVERITY of illness index ,PARENTING ,PHYSIOLOGICAL adaptation ,PSYCHOSOCIAL factors ,INTERPERSONAL relations ,AFFECTIVE disorders ,DESCRIPTIVE statistics ,PARENT-child relationships ,PEOPLE with intellectual disabilities ,AGGRESSION (Psychology) ,PSYCHOLOGICAL stress ,CHILDREN - Abstract
The present study examined which aspects of the child's behavior and clinical profile accounted for three dimensions of parenting stress: related to parenting roles, to interactions with the child, and to the child. Measures of adaptive behavior, intellectual functioning, autism symptom severity, and challenging behavior and emotional difficulties were examined as predictors of parenting stress in 157 mothers of children recently diagnosed with autism. Children's emotional problems and aggressive behavior were most predictive of parenting distress, whereas autism symptoms along with emotional problems and aggressive behavior, respectively, were linked to stress pertaining to interactions and to the child. These findings underscore the need for comprehensive and complementary interventions that focus on children's behavior and symptoms but also on parent adjustment. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
32. Brief Report: Impact of COVID-19 in Individuals with Autism Spectrum Disorders: Analysis of a National Private Claims Insurance Database.
- Author
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Karpur, Arun, Vasudevan, Vijay, Shih, Andy, and Frazier, Thomas
- Subjects
PREVENTIVE medicine ,AUTISM ,LENGTH of stay in hospitals ,COVID-19 ,CONFIDENCE intervals ,HEALTH services accessibility ,MULTIPLE regression analysis ,COVID-19 vaccines ,ACQUISITION of data ,PATIENTS' attitudes ,RISK assessment ,COMPARATIVE studies ,HOSPITAL care ,MEDICAL records ,PEOPLE with disabilities ,PEOPLE with intellectual disabilities ,ODDS ratio ,COVID-19 pandemic ,COMORBIDITY - Abstract
The COVID-19 pandemic continues to have a detrimental impact on individuals with disabilities. Data from FAIR Health's FH® NPIC (National Private Insurance Claims) database, one of the nation's largest databases of private insurance claim records, were analyzed to understand the experiences of individuals with ASD in the COVID-19 pandemic. Multivariate logistic regression models revealed that individuals with ASD + ID were nine times more likely to be hospitalized following COVID-19 infection (OR = 9.3; 95% CI: 6.9–12.5) and were nearly six times more likely to have an elevated length of hospital stay (OR = 5.9; 95% CI: 3.5–10.1) compared to those without ASD + ID. These findings point to the need for prioritizing access to vaccines to prevent COVID-19 infection and morbidities. This is the first study to illustrate a higher likelihood of hospitalization and elevated length of hospital stay from COVID-19 in individuals with ASD and other comorbidities. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
33. Brief Report: Associations Between Self-injurious Behaviors and Abdominal Pain Among Individuals with ASD-Associated Disruptive Mutations.
- Author
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Kurtz-Nelson, Evangeline C., Tham, See Wan, Ahlers, Kaitlyn, Cho, Daniel, Wallace, Arianne S., Eichler, Evan E., Bernier, Raphael A., and Earl, Rachel K.
- Subjects
GENETICS of autism ,RISK factors of self-injurious behavior ,ADAPTABILITY (Personality) ,GENETIC mutation ,GENETIC disorders ,COGNITION ,RISK assessment ,AUTISM ,ABDOMINAL pain ,PEOPLE with intellectual disabilities ,DISEASE complications - Abstract
Self-injurious behaviors (SIB) are elevated in autism spectrum disorder (ASD) and related genetic disorders, but the genetic and biological mechanisms that contribute to SIB in ASD are poorly understood. This study examined rates and predictors of SIB in 112 individuals with disruptive mutations to ASD-risk genes. Current SIB were reported in 30% of participants and associated with poorer cognitive and adaptive skills. History of severe abdominal pain predicted higher rates of SIB and SIB severity after controlling for age and adaptive behavior; individuals with a history of severe abdominal pain were eight times more likely to exhibit SIB than those with no history. Future research is needed to examine associations between genetic risk, pain, and SIB in this population. [ABSTRACT FROM AUTHOR]
- Published
- 2021
- Full Text
- View/download PDF
34. Autism Diagnostic Interview-Revised Within DSM-5 Framework: Test of Reliability and Validity in Chinese Children.
- Author
-
Lai, Kelly Y. C., Yuen, Emily C. W., Hung, Se Fong, and Leung, Patrick W. L.
- Subjects
DIAGNOSIS of autism ,RESEARCH evaluation ,CONFIDENCE intervals ,RESEARCH methodology evaluation ,PSYCHOMETRICS ,ATTENTION-deficit hyperactivity disorder ,DESCRIPTIVE statistics ,SENSITIVITY & specificity (Statistics) ,CLASSIFICATION of mental disorders ,PEOPLE with intellectual disabilities ,ODDS ratio ,ALGORITHMS ,CHILDREN - Abstract
This study examines the psychometric properties of the Autism Diagnostic Interview-Revised (ADI-R) in the context of DSM-5 in a sample of Chinese children. Using re-mapped ADI-R items and algorithms matched to DSM-5 criteria, and administering to children with autism spectrum disorder (ASD) with and without intellectual disability, attention-deficit hyperactivity disorder, and typically developing, it evidenced high sensitivity and specificity. However, similar to DSM-IV algorithm, the DSM-5 algorithms were better at classifying ASD among children with intellectual disability than among those without intellectual disability. With the DSM-5's recognition of the spectrum nature of ASD, the performance of the ADI-R can be improved by having finer gradations in the ADI-R scoring and adding more items on the restricted and repetitve behavior domain. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
35. Improving Beverage Choice in Adults with Developmental Disabilities: Implementation of a Token Reinforcement System in a Community Residential Setting.
- Author
-
May, Brandon K., Britwum, Kwadwo, and Nicol, Ginger E.
- Subjects
SOCIAL support ,DEVELOPMENTAL disabilities ,INGESTION ,COMMUNITIES ,FOOD preferences ,INTELLECT ,RESIDENTIAL care ,PEOPLE with intellectual disabilities - Abstract
Individuals with developmental disabilities (DD) are twice as likely to have obesity than non-disabled individuals. Replacing the consumption of sugar sweetened beverages (SSBs) with water has many health benefits, including weight reduction. In this study, a token reinforcement system was implemented to increase water consumption and decrease the consumption of SSBs with 14 adult participants with DD living in a community-based independent supported living (ISL) center. Token reinforcement reduced the consumption of SSBs, with associated reductions in calorie consumption and body weight. Findings are especially important for treatment settings where resources for individualized meal planning and staffing to support comprehensive behavioral interventions may be limited. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
36. Parent Questionnaires in the Evaluation of Pre-School Children Referred for Neuropsychiatric Assessment.
- Author
-
Cederlund, Mats
- Subjects
DIAGNOSIS of autism ,RESEARCH evaluation ,SEVERITY of illness index ,QUESTIONNAIRES ,PEOPLE with intellectual disabilities ,NEUROLOGIC examination ,MEDICAL needs assessment ,PARENTS ,EVALUATION ,CHILDREN - Abstract
One-hundred twenty-four pre-school children referred for assessment to a neuropsychiatric team were included in this study of the Autism Behavior Checklist (ABC), ESSENCE-Q, and Conners Abbreviated Parent-Teacher Rating Scale (CAPRS). All three questionnaires showed a good correlation towards severity of symptoms in ASD. The ABC questionnaire was, as has been shown in earlier research less accurate in identifying individuals with ASD having an IQ within the normal range. However the ESSENCE-Q, and the CAPRS proved to identify children with difficulties needing further assessment regardless of intellectual ability. The CAPRS showed a good correlation to severity in ASD indicating difficulties in the regulation of activity and behavior likely to be connected to ASD in pre-school children. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
37. Health-Related Quality of Life in Pediatric Patients with Syndromic Autism and their Caregivers.
- Author
-
Bolbocean, Corneliu, Andújar, Fabiola N., McCormack, Maria, Suter, Bernhard, and Holder Jr., J. Lloyd
- Subjects
CAREGIVERS ,CROSS-sectional method ,QUANTITATIVE research ,SURVEYS ,QUALITY of life ,AUTISM ,PEOPLE with intellectual disabilities ,RETT syndrome ,PHENOTYPES - Abstract
Children with autism have a significantly lower quality of life compared with their neurotypical peers. While multiple studies have quantified the impact of autism on health-related quality of life (HRQoL) through standardized surveys such as the PedsQL, none have specifically investigated the impact of syndromic autism. Here we evaluate HRQoL in children diagnosed with three genetic disorders that strongly predispose to syndromic autism: Phelan-McDermid syndrome (PMD), Rett syndrome (RTT), and SYNGAP1-related intellectual disability (SYNGAP1-ID). We find the most severely impacted dimension is physical functioning. Strikingly, syndromic autism results in worse quality of life than other chronic disorders including idiopathic autism. This study demonstrates the utility of caregiver surveys in prioritizing phenotypes, which may be targeted as clinical endpoints for genetically defined ASDs. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
38. The Relationship between Motor Skills and Intelligence in Children with Autism Spectrum Disorder.
- Author
-
Ramos-Sánchez, Carlos Pelayo, Kortekaas, Dianne, Van Biesen, Debbie, Vancampfort, Davy, and Van Damme, Tine
- Subjects
POSTURAL balance ,MOVEMENT disorders ,RETROSPECTIVE studies ,INTELLECT ,AUTISM ,QUESTIONNAIRES ,DESCRIPTIVE statistics ,PEOPLE with intellectual disabilities ,DATA analysis software ,MOTOR ability - Abstract
This study explored the association between intelligence and motor skills in children with ASD after controlling for Attention Deficit and Hyperactivity Disorder (ADHD) and the associations between motor impairment and intellectual disability (ID) in this population. In total, 120 children with ASD (3–16 years; 81.7% boys) completed a standardized intelligence test, the Movement Assessment Battery for Children and Beery–Buktenica Developmental Test of Visual-Motor Integration. Variance in performance IQ was associated with 20.8% of the variance in motor skills while significant associations were found between comorbid ID and motor impairment (ɸ = 0.304). Manual Dexterity and Balance are moderately influenced by performance IQ in children with ASD. Furthermore, presence of ID is also moderately associated with motor impairment in this population. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
39. Clinical Profiles of Black and White Children Referred for Autism Diagnosis.
- Author
-
Fombonne, Eric and Zuckerman, Katharine E.
- Subjects
DIAGNOSIS of autism ,DELAYED diagnosis ,ADAPTABILITY (Personality) ,BLACK people ,RACE ,COGNITION ,NEUROPSYCHOLOGICAL tests ,MEDICAL care use ,AUTISM ,AFFECTIVE disorders ,WHITE people ,PEOPLE with intellectual disabilities ,BEHAVIOR modification ,SYMPTOMS - Abstract
Black children with autism are diagnosed at an older age. Whether or not late detection is paralleled by differing clinical presentation is not known. We evaluated symptom profiles of 245 Black and 488 sex- and age-matched White non-Hispanic participants (82.8% male; mean age: 4.2 years) referred for ASD diagnosis. Both groups showed similar overall levels of autistic symptoms. Black children had significantly but slightly lower scores on cognitive tests and on the Vineland communication domain than White children. Groups were comparable on internalizing and externalizing co-occurring problems. Given the largely similar clinical profiles, clinical differences in initial presentation may not be a primary reason for Black/White disparities in diagnostic and services use. Limitations of a cross-sectional referred sample are acknowledged. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
40. Changes in Social Impairment for People with Intellectual Disabilities: A Follow-up of the Camberwell Cohort.
- Author
-
Beadle-Brown, Julie, Murphy, Glynis, Wing, Lorna, Gould, Judy, Shah, Amitta, and Holmes, Nan
- Subjects
- *
SOCIAL disabilities , *INTELLECTUAL disabilities , *SOCIAL skills , *AUTISM - Abstract
The skills and social impairments of a total population of children with severe intellectual disabilities and/or autism from Camberwell, South London (Wing and Gould, 1978 and 1979), were assessed using the Handicaps, Behaviours and Skills schedule, and they were reassessed when they were adolescents and young adults (Shah, 1986). Changes in social impairment over time are presented here. As Shah (1986) had found with a smaller sample, social impairment remained relatively stable over time: on a simple “socially impaired” versus “sociable” dichotomous grouping, 93% did not change social group. Within the socially impaired group, there was a significant increase in impairment over time (i.e., people who were passive at Time 1, were aloof at Time 2). Implications of these results and predictions for a further follow-up study are discussed. [ABSTRACT FROM AUTHOR]
- Published
- 2002
- Full Text
- View/download PDF
41. Evaluating a Postsecondary Education Program for Students with Intellectual Disabilities: Leveraging the Parent Perspective.
- Author
-
Agarwal, Rumi, Heron, Laura, and Burke, Shanna L.
- Subjects
PARENT attitudes ,SPECIAL education ,EVALUATION of human services programs ,EMPLOYMENT of people with disabilities ,PARENTS of children with disabilities ,RESEARCH methodology ,MATHEMATICAL models ,MOTIVATION (Psychology) ,INTERVIEWING ,DEVELOPMENTAL disabilities ,BEHAVIOR ,QUALITATIVE research ,PSYCHOSOCIAL factors ,GRADUATE education ,UNIVERSITIES & colleges ,THEORY ,DECISION making ,PEOPLE with intellectual disabilities ,THEMATIC analysis - Abstract
Postsecondary education (PSE) programs serving individuals with intellectual disabilities (ID) aim to improve life outcomes by increasing skills in three key areas: academics, independent living, and employment. To ensure that PSE programs are successful, ongoing evaluations are necessary. It is particularly important to gather parental perspectives given the integral role they play regarding decision making for students with ID. This qualitative study analyzed data from 58 interviews conducted with parents whose child was enrolled in a PSE program nested within a large public university. Thematic analysis with a deductive approach was the established theoretical model used to guide the analysis. Themes related to capability, opportunity, motivation, and behavior are presented, and future recommendations for PSE programs are discussed. [ABSTRACT FROM AUTHOR]
- Published
- 2021
- Full Text
- View/download PDF
42. Anxiety Disorders in Williams Syndrome Contrasted with Intellectual Disability and the General Population: A Systematic Review and Meta-Analysis.
- Author
-
Royston, R., Howlin, P., Waite, J., and Oliver, C.
- Subjects
- *
ANXIETY disorders , *PEOPLE with intellectual disabilities , *META-analysis , *SYSTEMATIC reviews , *WILLIAMS syndrome , *DISEASE prevalence , *DIAGNOSIS , *MENTAL illness risk factors - Abstract
Individuals with specific genetic syndromes associated with intellectual disability (ID), such as Williams syndrome (WS), are at increased risk for developing anxiety disorders. A systematic literature review identified sixteen WS papers that could generate pooled prevalence estimates of anxiety disorders for WS. A meta-analysis compared these estimates with prevalence estimates for the heterogeneous ID population and the general population. Estimated rates of anxiety disorders in WS were high. WS individuals were four times more likely to experience anxiety than individuals with ID, and the risk was also heightened compared to the general population. The results provide further evidence of an unusual profile of high anxiety in WS. [ABSTRACT FROM AUTHOR]
- Published
- 2017
- Full Text
- View/download PDF
43. Diagnostic Substitution for Intellectual Disability: A Flawed Explanation for the Rise in Autism.
- Author
-
Nevison, Cynthia and Blaxill, Mark
- Subjects
- *
DIAGNOSIS of autism , *PEOPLE with intellectual disabilities , *AUTISM , *DISEASE prevalence - Abstract
Time trends in autism spectrum disorder (ASD) and intellectual disability (ID) prevalence from the United States Individuals with Disabilities Education Act data were computed from 2000 to 2011 for each state and each age from 6 to 17. These trends did not support the hypothesis that diagnostic substitution for ID can explain the ASD rise over recent decades, although the hypothesis appeared more plausible when the data were aggregated across all states and ages. Nationwide ID prevalence declined steeply over the last two decades, but the decline was driven mainly by ~15 states accounting for only one-fourth of the U.S. school population. More commonly, including in the most populous states, ID prevalence stayed relatively constant while ASD prevalence rose sharply. [ABSTRACT FROM AUTHOR]
- Published
- 2017
- Full Text
- View/download PDF
44. Sex Differences in Co-occurring Conditions Among Autistic Children and Youth in Florida: A Retrospective Cohort Study (2012–2019).
- Author
-
Angell, Amber M., Deavenport-Saman, Alexis, Yin, Larry, Zou, Baiming, Bai, Chen, Varma, Deepthi, and Solomon, Olga
- Subjects
EPILEPSY ,CHILDREN with disabilities ,RETROSPECTIVE studies ,GASTROINTESTINAL diseases ,SEX distribution ,AUTISM in adolescence ,HEALTH insurance reimbursement ,METABOLIC disorders ,SLEEP disorders ,ATTENTION-deficit hyperactivity disorder ,AUTISM in children ,AUTISM ,DISEASE prevalence ,AFFECTIVE disorders ,ODDS ratio ,ANXIETY disorders ,PEOPLE with intellectual disabilities ,COMORBIDITY ,LONGITUDINAL method ,CHILD development deviations - Abstract
Autistic children have a high prevalence of co-occurring mental health, developmental/behavioral, and medical conditions, but research on sex/gender differences has been mixed. We used Florida healthcare claims data to characterize sex differences (female/male) in co-occurring conditions among autistic children ages 1–21 (N = 83,500). After adjusting for age, race, ethnicity, urbanicity, and insurance, autistic girls had significantly higher odds of anxiety disorders, mood disorders, intellectual disability, developmental disorders, epilepsy, metabolic disorders, gastrointestinal disorders, and sleep disorders compared to autistic boys. Autistic girls had significantly lower odds of ADHD. The findings contribute to the growing body of research on the unique healthcare needs of autistic girls. [ABSTRACT FROM AUTHOR]
- Published
- 2021
- Full Text
- View/download PDF
45. Collateral Effects of Behavioral Treatment for Problem Behavior on Caregiver Stress.
- Author
-
Kurtz, Patricia F., Strohmeier, Craig W., Becraft, Jessica L., and Chin, Michelle D.
- Subjects
PSYCHOLOGICAL stress ,TREATMENT of behavior disorders in children ,PSYCHOLOGY of parents ,ANALYSIS of variance ,DEVELOPMENTAL disabilities ,BEHAVIOR therapy ,SEVERITY of illness index ,PSYCHOLOGICAL tests ,AUTISM ,REPEATED measures design ,ATTENTION ,PEOPLE with intellectual disabilities - Abstract
When individuals with autism and intellectual and developmental disabilities exhibit severe problem behavior, assessment and treatment are often warranted. Parents of such individuals are at high risk for developing parenting stress. In this study, 194 parents completed the Parenting Stress Index-Short Form at their child's time of admission to and discharge from inpatient or outpatient treatment for severe problem behavior. Parent stress was examined in relation to rate and function of child problem behavior as determined via functional analysis. Repeated measures analyses of variance were conducted, and differential effects were observed when child participants exhibited an attention, automatic, or mands function for problem behavior. These findings highlight the importance of considering function of problem behavior in relation to parenting stress. [ABSTRACT FROM AUTHOR]
- Published
- 2021
- Full Text
- View/download PDF
46. The Development and Feasibility Study of a Multimodal 'Talking Wall' to Facilitate the Voice of Young People with Autism and Complex Needs: A Case Study in a Specialist Residential School.
- Author
-
Richards, Norah and Crane, Laura
- Subjects
AUTISM ,COMMUNICATION devices for people with disabilities ,DIFFUSION of innovations ,EMOTIONS ,FOCUS groups ,INTERVIEWING ,RESEARCH methodology ,PEOPLE with intellectual disabilities ,SCHOOL administrators ,STUDENT attitudes ,PILOT projects ,SOFTWARE architecture ,THEMATIC analysis ,SPECIAL education schools ,ADOLESCENCE ,ADULTS ,CHILDREN - Abstract
Limited research has examined methods to investigate the views, preferences and experiences of young people with autism and complex needs. The aim of this study, based at a specialist residential school in England, was to develop and pilot an innovative method for this purpose—a 'Talking Wall'—that was trialled over a 6-month period. Thematic analysis of data from focus groups and semi structured interviews with staff, combined with structured observations of pupils, resulted in three key themes: supporting the expression and evaluation of emotions that underlie preferences; recognising the impact of transitions; and the important role of familiar adults in interpreting communication bids. These positive, initial findings suggest the Talking Wall approach merits further development and evaluation. [ABSTRACT FROM AUTHOR]
- Published
- 2020
- Full Text
- View/download PDF
47. The Prevalence of Self-injurious Behaviour in Autism: A Meta-analytic Study.
- Author
-
Steenfeldt-Kristensen, Catherine, Jones, Chris A., and Richards, Caroline
- Subjects
AUTISM ,CONFIDENCE intervals ,PEOPLE with intellectual disabilities ,META-analysis ,SELF-injurious behavior ,SELF-mutilation - Abstract
Self-injurious behaviour is purportedly common in autism, but prevalence rates have not yet been synthesised meta-analytically. In the present study, data from 14,379 participants in thirty-seven papers were analysed to generate a pooled prevalence estimate of self-injury in autism of 42% (confidence intervals 0.38–0.47). Hand-hitting topography was the most common form of self-injury (23%), self-cutting topography the least common (3%). Sub-group analyses revealed no association between study quality, participant intellectual disability or age and overall prevalence rate of self-injury. However, females obtained higher prevalence rates than males (p =.013) and hair pulling and self-scratching were associated with intellectual disability (p =.008 and p =.002, respectively). The results confirm very high rates of self-injury in autism and highlight within group risk-markers. [ABSTRACT FROM AUTHOR]
- Published
- 2020
- Full Text
- View/download PDF
48. Triggers of Aggressive Behaviors in Intellectually Disabled Adults and Their Association with Autism, Medical Conditions, Psychiatric Disorders, Age and Sex: A Large-Scale Study.
- Author
-
Cohen, Ira L. and Tsiouris, John A.
- Subjects
RISK factors of aggression ,AGE distribution ,AUTISM ,HEALTH status indicators ,PEOPLE with intellectual disabilities ,PSYCHOLOGY of People with disabilities ,PSYCHOSES ,RISK assessment ,SEX distribution ,SLEEP disorders ,VISION disorders ,ADULTS - Abstract
Aggressive behaviors in those with intellectual disability (ID) and autism (ASD) have been linked to a variety of factors including ID level, age, sex, psychiatric disorders, and medical conditions but these factors have not been studied, in large samples, in terms of how they affect the stimuli that trigger aggression. In this survey of 2243 adults, four triggers of aggression associated with frustration, discomfort, change in the physical/social environment, and defensive reactions were analyzed for their relation to ID level, ASD, age, sex, number of psychiatric diagnoses, sleeping problems, seizures, visual impairment, ear infections and gastrointestinal problems. All four triggers were associated with increasing number of psychiatric disorders, with frustration, discomfort, and change intolerance commonly linked to sleeping problems and ASD. Implications for assessment and intervention are discussed. [ABSTRACT FROM AUTHOR]
- Published
- 2020
- Full Text
- View/download PDF
49. What is the Prevalence of Self-harming and Suicidal Behaviour in Under 18s with ASD, With or Without an Intellectual Disability?
- Author
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Oliphant, Rosalind Y. K., Smith, Eleanor M., and Grahame, Victoria
- Subjects
RISK factors of self-injurious behavior ,AUTISM ,PEOPLE with intellectual disabilities ,SELF-mutilation ,TEENAGERS' conduct of life ,SYSTEMATIC reviews ,SUICIDAL ideation ,DISEASE prevalence ,ADOLESCENCE ,CHILDREN - Abstract
A systematic literature review was undertaken to ascertain the prevalence of self-harm and suicidal behaviour in children and young people under 18 years old with a diagnosis of autism spectrum disorder (ASD), with or without an intellectual disability. There was variation in the reported prevalence rates but results suggested that rates of both self-harm and suicidal behaviour may be elevated in ASD compared to the general population. This is in keeping with literature relating to autistic adults but in contrast to conclusions of a previous systematic review. This review highlights the need for further research to explore the experience of self-harm and suicidal behaviour in autistic children and young people. [ABSTRACT FROM AUTHOR]
- Published
- 2020
- Full Text
- View/download PDF
50. Trajectories of Change in the Behavioral and Health Phenotype of Adolescents and Adults with Fragile X Syndrome and Intellectual Disability: Longitudinal Trends Over a Decade.
- Author
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Usher, Lauren V., DaWalt, Leann S., Hong, Jinkuk, Greenberg, Jan S., and Mailick, Marsha R.
- Subjects
AGE distribution ,AUTISM ,CONFERENCES & conventions ,FRAGILE X syndrome ,HEALTH status indicators ,LONGITUDINAL method ,PEOPLE with intellectual disabilities ,REGRESSION analysis ,SEX distribution ,WEIGHT gain ,PHENOTYPES ,ACTIVITIES of daily living ,QUANTITATIVE research ,BODY mass index ,BEHAVIOR disorders ,DISEASE complications - Abstract
This study examined trajectories of daily living skills, behavior problems, body mass index (BMI), and health conditions spanning nearly a decade in adolescents and adults with fragile X syndrome (N = 134; age range at study end = 19–49 years), examining influences of sex and autism spectrum disorder (ASD) symptoms. Hierarchical linear modeling revealed early increases in daily living skills, with decreases at older ages. Behavior problems became less severe over time, with some increases at older ages. Individuals gained weight and had increasing health problems over time. Fewer ASD symptoms were associated with greater daily living skills and fewer behavior problems at study start. This study offers some of the first prospective quantitative analyses of behavioral and health life course trajectories in FXS. [ABSTRACT FROM AUTHOR]
- Published
- 2020
- Full Text
- View/download PDF
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