Parents' Attitudes toward Clinical Genetic Testing for Autism Spectrum Disorder-Data from a Norwegian Sample.
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ABSTRACT:
SUBMITTER: Johannessen J
PROVIDER: S-EPMC5454987 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Although the ability to make optimal decisions under uncertainty is an integral part of everyday life, individuals with autism spectrum disorder (ASD) frequently report that they experience difficulties with this skill. In behavioral economics, researchers distinguish two types of uncertainty to understand decision-making in this setting: risk (known probabilities) and ambiguity (unknown probabilities). However, it remains unclear how individuals with ASD behave under risk and ambiguity, despite growing evidence of their altered decision-making under uncertainty. We therefore extended previous research by studying the attitudes of those with ASD toward risk and ambiguity in both positive and negative contexts (i.e., gain and loss). In gain contexts, no significant difference was observed between the groups in risk attitudes, but ambiguity aversion was attenuated in ASD. In loss contexts, ambiguity attitudes did not significantly differ between the groups, but the ASD participants were less risk-seeking compared with the controls. In addition, insensitivity to the context change under risk and ambiguity in ASD was both significantly associated with poor social skills. These results improve our understanding of altered decision-making under uncertainty by disentangling the attitudes toward risk and ambiguity in ASD individuals. Applying behavioral economic tools may provide insights into the mechanisms underlying behavioral disturbances in ASD.
| S-EPMC5559781 | biostudies-literature
Project description:BackgroundIn recent years, parent-mediated intervention for children with autism spectrum disorder (ASD) has increased. Therefore, implementing effective parent training programs for parents of children with autism is of paramount importance, particularly in low- and middle-income countries. However, little is known about the status of and gaps in parents' knowledge on ASD, which may hinder the development of valid parental training programs. Herein, we aimed at exploring the status of Chinese parents' knowledge, attitude and behavior toward ASD, and potential factors affecting the acquisition of correct knowledge.MethodsThis study used a self-designed parental knowledge questionnaire of autism (PKQA) comprising 20 questions alongside another questionnaire comprising additional 17 questions covering the aspects of family demographics, attitudes, and behaviors of parents. In total, we included 394 parents who visited the outpatient department of the Child's Development and Behavior Center of the Third Affiliated Hospital of Sun Yat-Sen University between December 2018 and May 2019, with their children meeting the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) diagnostic criteria for ASD.ResultsThe median knowledge score in the PKQA was 15 [interquartile range (IQR), 13-17]. Advanced paternal age and longer time interval from diagnosis to enrolling into the parent training program were associated with a lower total knowledge score (all P<0.001). Higher maternal education attainment, higher family income, child being currently under intervention, and family members sharing a common perception of the diagnosis were associated with a higher total knowledge score (all P<0.01). Reading autism-related books (P<0.001) or attending professional lectures (P=0.019) were also associated with a higher total knowledge score.ConclusionsTaken together, this study revealed that family demographics and parents' attitudes and behaviors toward ASD may significantly influence their knowledge about autism, suggesting the need for promoting more targeted parental skills training programs.
| S-EPMC9561515 | biostudies-literature
Project description:ObjectiveTourette's disorder (TD) and autism spectrum disorder (ASD) share clinical features and possibly an overlapping etiology. The aims of this study were to examine ASD symptom rates in participants with TD, and to characterize the relationships between ASD symptom patterns and TD, obsessive-compulsive disorder (OCD), and attention-deficit/hyperactivity disorder (ADHD).MethodParticipants with TD (n = 535) and their family members (n =234) recruited for genetic studies reported TD, OCD, and ADHD symptoms and completed the Social Responsiveness Scale Second Edition (SRS), which was used to characterize ASD symptoms.ResultsSRS scores in participants with TD were similar to those observed in other clinical samples but lower than in ASD samples (mean SRS total raw score = 51; SD = 32.4). More children with TD met cut-off criteria for ASD (22.8%) than adults with TD (8.7%). The elevated rate in children was primarily due to high scores on the SRS Repetitive and Restricted Behaviors (RRB) subscale. Total SRS scores were correlated with TD (r = 0.27), OCD (r = 0.37), and ADHD (r = 0.44) and were higher among individuals with OCD symptom-based phenotypes than for those with tics alone.ConclusionHigher observed rates of ASD among children affected by TD may in part be due to difficulty in discriminating complex tics and OCD symptoms from ASD symptoms. Careful examination of ASD-specific symptom patterns (social communication vs. repetitive behaviors) is essential. Independent of ASD, the SRS may be a useful tool for identifying patients with TD with impairments in social communication that potentially place them at risk for bullying and other negative sequelae.
| S-EPMC5648014 | biostudies-literature
Project description:The increasing prevalence of autism spectrum disorder in children and the huge family burdens have caused concern in the academic field as well as society.To study the personality characteristics and neurocognitive functions in the Chinese parents of children with autism spectrum disorder (ASD) and compare them with the parents of well-developed children.This study recruited 41 Chinese children who met the diagnostic criteria of autism spectrum disorder according to Diagnostic and Statistical Manual of mental disorders-IV (DSM-IV). Their 79 biological parents were evaluated by means of Eysenck Personality Questionnaire (EPQ) and a set of neuropsychological tests. The normal control group consisted of 80 parents of well-developed children, and they were matched by age and gender.We found that the EPQ scores in the P scale for parents of children with ASD were significantly higher than the parents of well-developed children (t=1.68, p=0.039), while their scores in E scale and L scale were significantly lower (t=1.84, p=0.035; t=2.07, p=0.023). We also identified that the parents of children with ASD took significantly longer time than the normal control to complete Trail Making Test (TMT) Part A and Part B-M (t=1.57, p=0.013; t=0.83, p=0.019).Compared to the parents of well-developed children, the parents of children with ASD were more likely to be unconcerned, rigid, stubborn, introverted, and reticent. They displayed less novelty and thrill-seeking behaviors, and had limited social skills and maturity. Although the general cognitive functions including IQ were relatively intact in the parents of children with ASD, there were impairments in their planning, flexibility and visual processing functions.
| S-EPMC5518253 | biostudies-other
Project description:Heightened interest in sensory function in persons with autism spectrum disorder (ASD) presents an unprecedented opportunity for impactful, interdisciplinary work between neuroscientists and clinical practitioners for whom sensory processing is a focus. In spite of this promise, and a number of overlapping perspectives on sensory function in persons with ASD, neuroscientists and clinical practitioners are faced with significant practical barriers to transcending disciplinary silos. These barriers include divergent goals, values, and approaches that shape each discipline, as well as different lexical conventions. This commentary is itself an interdisciplinary effort to describe the shared perspectives, and to conceptualize a framework that may guide future investigation in this area. We summarize progress to date and issue a call for clinical practitioners and neuroscientists to expand cross-disciplinary dialogue and to capitalize on the complementary strengths of each field to unveil the links between neural and behavioral manifestations of sensory differences in persons with ASD. Joining forces to face these challenges in a truly interdisciplinary way will lead to more clinically informed neuroscientific investigation of sensory function, and better translation of those findings to clinical practice. Likewise, a more coordinated effort may shed light not only on how current approaches to treating sensory processing differences affect brain and behavioral responses to sensory stimuli in individuals with ASD, but also on whether such approaches translate to gains in broader characteristics associated with ASD. It is our hope that such interdisciplinary undertakings will ultimately converge to improve assessment and interventions for persons with ASD. Autism Res 2016, 9: 920-925. © 2016 International Society for Autism Research, Wiley Periodicals, Inc.
| S-EPMC5564205 | biostudies-other
Project description:Background:Children diagnosed with autism spectrum disorder (ASD) have social and cognitive disabilities. For parents, these behaviors can lead to humiliation, social exclusion, and isolation. Stigma is a problem that not only may affect the individual with high functioning autism, but has the potential to extend to their family as well. Indeed, research indicates that the parents of children with disabilities (including ASD) commonly experience stigmatizing reactions from others. Aim of work:To determine the prevalence of self and enacted stigma among parents of ASD children from Riyadh, Saudi Arabia, and recognize possible risk factors and causes of stigmatization. Material and methods:An observational cross-sectional study involving the parents of ASD children from Riyadh, Saudi Arabia. About 163 participants were included from the Centre for Autism Research (CFAR) at King Faisal Specialist Hospital & Research Centre (KFSH & RC) in Riyadh. The primary material used for data collection was a five-point scale questionnaire developed by the investigator. The questionnaire consisted closed ended questions related to the participants' demographic data, autistic child, family life, resources, and social experiences as a parent. The collected data were analyzed using descriptive statistics and appropriate statistical analysis, using Statistical package for the social sciences (SPSS), version 22. The level of significance was P value?<?.05. Results:The findings of this work indicated that 55 (33.7%) of the parents scored more than 3 in answering questions related to felt stigma; 82 (50.3%) were fathers. On the other hand, 108 (66.3%) did not feel stigmatized being a parent of autistic child. Forty-two (25.8%) of the parents scored more than 3 in answering questions related to enacted stigma, whereas 121 (74.2%) did not face enacted stigmatization being a parent of autistic child. There was a strong tendency for mothers (41, 75%) to feel more self- and enacted stigmatized than fathers (P?<?.05). Moreover, the gender of the autistic child, consanguinity, severity of the ASD, and the monthly income of the family showed no significant difference in the parents who scored more than 3 for felt- or enacted stigmatization (P?>?.05). Conclusion:Among participated parents of children with ASD in Riyadh, Saudi Arabia, 33.7% of them experienced stigmatization, and mothers felt more self- and enacted stigmatized when compared to fathers. Public awareness among people in Saudi Arabia have been increased and, thus, negative stigmatization has decreased among parents in the country. A high level of felt stigma suggests the need for psychological intervention for the family to help cope with this new situation. A higher level of enacted stigma suggests the need for their rights (individuals with ASD) and increased awareness in the society. It is recommended that further research is needed in different centers in Riyadh and other regions of Saudi Arabia to investigate the prevalence of stigma in parents of autistic children.
| S-EPMC7568054 | biostudies-literature
Project description:ObjectiveThis study aimed to explore the perceptions of parents of children with autism spectrum disorder (ASD) and their coping strategies.MethodsThe data of the study was collected using face-to-face semi-structured interviews. The participants were purposefully selected from the three schools in Mpumalanga Province because they had children diagnosed with ASD and data was analyzed using thematic content analysis. In this study, primary caregivers were selected. In the end, 12 women were interviewed, and the data saturation was reached. Ethical considerations and measures to ensure trustworthiness were carried out throughout the study.ResultsThe findings revealed two themes: caregivers' understanding and misconceptions of ASD and coping mechanisms used in dealing challenges of caring for a child with ASD; and five subthemes: lack of knowledge, cultural beliefs, prayer, strong support system, and acceptance.ConclusionBased on the findings, more awareness campaigns should be done on ASD to increase parents' understanding of the condition. Understanding the cultural beliefs of parents regarding ASD may assist health care professionals in developing care practices that are accepted in their culture, and may enhance parents' coping skills.
| S-EPMC7644554 | biostudies-literature
Project description:ObjectiveThe purpose of this study was to investigate whether service losses during the coronavirus disease 2019 (COVID-19) pandemic were associated with worsened parent mental health or child behavioral health among families of children with autism spectrum disorder and to identify factors associated with favorable parent appraisals of habilitative teletherapy (applied behavior analysis; speech, occupational, physical therapy) for their child.MethodThis web-based survey study was conducted from May to July 2021 with parents whose children were receiving habilitative therapy for autism from an integrated health system. A total of 322 parents responded to the survey (20% response rate). The outcome variables were pandemic-related parent mental health, pandemic-related child behavioral health, and appraisal of habilitative teletherapy. Predictors were COVID-19-related services changes in health care or child care, COVID-19 history (COVID-19 stress, testing positive for COVID-19), and child autism factors (autistic behaviors, caregiving strain).ResultsLoss of regular child care was associated with higher odds of worsened parent mental health (odds ratio [OR] = 2.7, 95% confidence interval [CI] = 1.5-4.8); higher levels of caregiving strain were associated with worsened child behavioral health (OR = 2.3, 95% CI = 1.4-3.8). Higher levels of COVID-19 stress were associated with more favorable appraisals of telehealth (β = 0.4, p < 0.01), whereas higher caregiving strain scores were associated with less favorable appraisals of telehealth (β = -0.2, p < 0.01).ConclusionDuring COVID-19, caregiving factors were associated with worsened parent mental health and worsened child behavioral health, and telehealth is not preferred by all families. Policy interventions to support caregivers, such as affordable, high-quality child care and paid family leave, are a high priority.
| S-EPMC9837790 | biostudies-literature
Project description:This SuperSeries is composed of the SubSeries listed below.
2018-02-27 | GSE111176 | GEO
Project description:ImportanceMost evidence to date highlights the importance of genetic influences on the liability to autism and related traits. However, most of these findings are derived from clinically ascertained samples, possibly missing individuals with subtler manifestations, and obtained estimates may not be representative of the population.ObjectivesTo establish the relative contributions of genetic and environmental factors in liability to autism spectrum disorder (ASD) and a broader autism phenotype in a large population-based twin sample and to ascertain the genetic/environmental relationship between dimensional trait measures and categorical diagnostic constructs of ASD.Design, setting, and participantsWe used data from the population-based cohort Twins Early Development Study, which included all twin pairs born in England and Wales from January 1, 1994, through December 31, 1996. We performed joint continuous-ordinal liability threshold model fitting using the full information maximum likelihood method to estimate genetic and environmental parameters of covariance. Twin pairs underwent the following assessments: the Childhood Autism Spectrum Test (CAST) (6423 pairs; mean age, 7.9 years), the Development and Well-being Assessment (DAWBA) (359 pairs; mean age, 10.3 years), the Autism Diagnostic Observation Schedule (ADOS) (203 pairs; mean age, 13.2 years), the Autism Diagnostic Interview-Revised (ADI-R) (205 pairs; mean age, 13.2 years), and a best-estimate diagnosis (207 pairs).Main outcomes and measuresParticipants underwent screening using a population-based measure of autistic traits (CAST assessment), structured diagnostic assessments (DAWBA, ADI-R, and ADOS), and a best-estimate diagnosis.ResultsOn all ASD measures, correlations among monozygotic twins (range, 0.77-0.99) were significantly higher than those for dizygotic twins (range, 0.22-0.65), giving heritability estimates of 56% to 95%. The covariance of CAST and ASD diagnostic status (DAWBA, ADOS and best-estimate diagnosis) was largely explained by additive genetic factors (76%-95%). For the ADI-R only, shared environmental influences were significant (30% [95% CI, 8%-47%]) but smaller than genetic influences (56% [95% CI, 37%-82%]).Conclusions and relevanceThe liability to ASD and a more broadly defined high-level autism trait phenotype in this large population-based twin sample derives primarily from additive genetic and, to a lesser extent, nonshared environmental effects. The largely consistent results across different diagnostic tools suggest that the results are generalizable across multiple measures and assessment methods. Genetic factors underpinning individual differences in autismlike traits show considerable overlap with genetic influences on diagnosed ASD.
| S-EPMC4724890 | biostudies-literature