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1.
Autism Res ; 16(5): 1009-1023, 2023 05.
Article in English | MEDLINE | ID: covidwho-2284715

ABSTRACT

Autistic youth are at heightened risk for mental health issues, and pandemic-related stressors may exacerbate this risk. This study (1) described caregiver-reported youth mental health prior to and during the pandemic; and (2) explored individual, caregiver, and environmental factors associated with changes in autistic characteristics, social-emotional symptoms, and overall mental health. 582 caregivers of autistic children (2-18 years old) completed an online survey between June and July 2020 in which they provided demographic information, their child's pre-COVID and current mental health, autistic characteristics, and social-emotional symptoms. Caregivers also rated their own perceived stress, and COVID-related household and service disruption. According to caregivers, youth experienced more autistic characteristics and social-emotional concerns during the pandemic. Autistic youth were also reported to experience poorer overall mental health during the pandemic than before the pandemic. Older youth whose caregiver's indicated higher perceived stress and greater household disruption were reported to experience more autistic traits during pandemic. Caregiver-reported increases in youth social-emotional symptoms (i.e., behavior problems, anxiety, and low mood) was associated with being older, the presence of a pre-existing mental health condition, higher caregiver stress, and greater household and service disruption. Finally, experiencing less household financial hardship prior to COVID-19, absence of a pre-existing psychiatric condition, less caregiver stress, and less service disruption were associated with better youth pandemic mental health. Strategies to support the autistic community during and following the pandemic need to be developed. The developmental-ecological factors identified in this study could help target support strategies to those autistic youth who are most vulnerable to mental health problems.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , COVID-19 , Child , Adolescent , Humans , Child, Preschool , Mental Health , Autistic Disorder/epidemiology , COVID-19/epidemiology , Canada/epidemiology
2.
MMWR Surveill Summ ; 72(1): 1-15, 2023 03 24.
Article in English | MEDLINE | ID: covidwho-2280973

ABSTRACT

Problem/Condition: Autism spectrum disorder (ASD). Period Covered: 2020. Description of System: The Autism and Developmental Disabilities Monitoring Network is an active surveillance program that estimates prevalence and characteristics of ASD and monitors timing of ASD identification among children aged 4 and 8 years. In 2020, a total of 11 sites (located in Arizona, Arkansas, California, Georgia, Maryland, Minnesota, Missouri, New Jersey, Tennessee, Utah, and Wisconsin) conducted surveillance of ASD among children aged 4 and 8 years and suspected ASD among children aged 4 years. Surveillance included children who lived in the surveillance area at any time during 2020. Children were classified as having ASD if they ever received 1) an ASD diagnostic statement in an evaluation, 2) a special education classification of autism (eligibility), or 3) an ASD International Classification of Diseases (ICD) code (revisions 9 or 10). Children aged 4 years were classified as having suspected ASD if they did not meet the case definition for ASD but had a documented qualified professional's statement indicating a suspicion of ASD. This report focuses on children aged 4 years in 2020 compared with children aged 8 years in 2020. Results: For 2020, ASD prevalence among children aged 4 years varied across sites, from 12.7 per 1,000 children in Utah to 46.4 in California. The overall prevalence was 21.5 and was higher among boys than girls at every site. Compared with non-Hispanic White children, ASD prevalence was 1.8 times as high among Hispanic, 1.6 times as high among non-Hispanic Black, 1.4 times as high among Asian or Pacific Islander, and 1.2 times as high among multiracial children. Among the 58.3% of children aged 4 years with ASD and information on intellectual ability, 48.5% had an IQ score of ≤70 on their most recent IQ test or an examiner's statement of intellectual disability. Among children with a documented developmental evaluation, 78.0% were evaluated by age 36 months. Children aged 4 years had a higher cumulative incidence of ASD diagnosis or eligibility by age 48 months compared with children aged 8 years at all sites; risk ratios ranged from 1.3 in New Jersey and Utah to 2.0 in Tennessee. In the 6 months before the March 2020 COVID-19 pandemic declaration by the World Health Organization, there were 1,593 more evaluations and 1.89 more ASD identifications per 1,000 children aged 4 years than children aged 8 years received 4 years earlier. After the COVID-19 pandemic declaration, this pattern reversed: in the 6 months after pandemic onset, there were 217 fewer evaluations and 0.26 fewer identifications per 1,000 children aged 4 years than children aged 8 years received 4 years earlier. Patterns of evaluation and identification varied among sites, but there was not recovery to pre-COVID-19 pandemic levels by the end of 2020 at most sites or overall. For 2020, prevalence of suspected ASD ranged from 0.5 (California) to 10.4 (Arkansas) per 1,000 children aged 4 years, with an increase from 2018 at five sites (Arizona, Arkansas, Maryland, New Jersey, and Utah). Demographic and cognitive characteristics of children aged 4 years with suspected ASD were similar to children aged 4 years with ASD. Interpretation: A wide range of prevalence of ASD by age 4 years was observed, suggesting differences in early ASD identification practices among communities. At all sites, cumulative incidence of ASD by age 48 months among children aged 4 years was higher compared with children aged 8 years in 2020, indicating improvements in early identification of ASD. Higher numbers of evaluations and rates of identification were evident among children aged 4 years until the COVID-19 pandemic onset in 2020. Sustained lower levels of ASD evaluations and identification seen at a majority of sites after the pandemic onset could indicate disruptions in typical practices in evaluations and identification for health service providers and schools through the end of 2020. Sites with more recovery could indicate successful strategies to mitigate service interruption, such as pivoting to telehealth approaches for evaluation. Public Health Action: From 2016 through February of 2020, ASD evaluation and identification among the cohort of children aged 4 years was outpacing ASD evaluation and identification 4 years earlier (from 2012 until March 2016) among the cohort of children aged 8 years in 2020 . From 2016 to March 2020, ASD evaluation and identification among the cohort of children aged 4 years was outpacing that among children aged 8 years in 2020 from 2012 until March 2016. The disruptions in evaluation that coincided with the start of the COVID-19 pandemic and the increase in prevalence of suspected ASD in 2020 could have led to delays in ASD identification and interventions. Communities could evaluate the impact of these disruptions as children in affected cohorts age and consider strategies to mitigate service disruptions caused by future public health emergencies.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , COVID-19 , Male , Female , Humans , Child , United States/epidemiology , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/epidemiology , Autistic Disorder/diagnosis , Autistic Disorder/epidemiology , Developmental Disabilities/epidemiology , Pandemics , Population Surveillance , COVID-19/epidemiology , Utah , Prevalence
3.
Mol Autism ; 14(1): 7, 2023 02 14.
Article in English | MEDLINE | ID: covidwho-2246058

ABSTRACT

BACKGROUND: Heterogeneous mental health outcomes during the COVID-19 pandemic are documented in the general population. Such heterogeneity has not been systematically assessed in youth with autism spectrum disorder (ASD) and related neurodevelopmental disorders (NDD). To identify distinct patterns of the pandemic impact and their predictors in ASD/NDD youth, we focused on pandemic-related changes in symptoms and access to services. METHODS: Using a naturalistic observational design, we assessed parent responses on the Coronavirus Health and Impact Survey Initiative (CRISIS) Adapted For Autism and Related neurodevelopmental conditions (AFAR). Cross-sectional AFAR data were aggregated across 14 European and North American sites yielding a clinically well-characterized sample of N = 1275 individuals with ASD/NDD (age = 11.0 ± 3.6 years; n females = 277). To identify subgroups with differential outcomes, we applied hierarchical clustering across eleven variables measuring changes in symptoms and access to services. Then, random forest classification assessed the importance of socio-demographics, pre-pandemic service rates, clinical severity of ASD-associated symptoms, and COVID-19 pandemic experiences/environments in predicting the outcome subgroups. RESULTS: Clustering revealed four subgroups. One subgroup-broad symptom worsening only (20%)-included youth with worsening across a range of symptoms but with service disruptions similar to the average of the aggregate sample. The other three subgroups were, relatively, clinically stable but differed in service access: primarily modified services (23%), primarily lost services (6%), and average services/symptom changes (53%). Distinct combinations of a set of pre-pandemic services, pandemic environment (e.g., COVID-19 new cases, restrictions), experiences (e.g., COVID-19 Worries), and age predicted each outcome subgroup. LIMITATIONS: Notable limitations of the study are its cross-sectional nature and focus on the first six months of the pandemic. CONCLUSIONS: Concomitantly assessing variation in changes of symptoms and service access during the first phase of the pandemic revealed differential outcome profiles in ASD/NDD youth. Subgroups were characterized by distinct prediction patterns across a set of pre- and pandemic-related experiences/contexts. Results may inform recovery efforts and preparedness in future crises; they also underscore the critical value of international data-sharing and collaborations to address the needs of those most vulnerable in times of crisis.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , COVID-19 , Female , Humans , Adolescent , Child , Mental Health , COVID-19/epidemiology , Autistic Disorder/epidemiology , Pandemics , Autism Spectrum Disorder/epidemiology , Autism Spectrum Disorder/therapy , Cross-Sectional Studies
4.
Front Public Health ; 10: 1061796, 2022.
Article in English | MEDLINE | ID: covidwho-2199547

ABSTRACT

Background: Research has shown that parents of children with autism spectrum disorder (ASD) suffered high levels of stress during the COVID-19 pandemic and faced poor family quality of life (FQOL). However, little is known about the inherent dynamic interaction between pandemic stress and FQOL, especially in the Chinese cultural context. Aims: This study provides preliminary evidence by examining the relationships among pandemic stress, parental involvement, and FQOL for children with autism in mainland China. Method: A total of 709 parents of children with autism completed measures of FQOL, parental involvement, and pandemic stress. Structural equation modeling was employed to examine the interrelations among these variables. Results: Pandemic stress has direct effect and indirect effect mediated by parental involvement on FQOL. Two dimensions of pandemic stress had a direct effect on FQOL (ß1 = 0.11; ß2 = -0.55) and three dimensions had an indirect effect on FQOL through parental involvement (ß1 = -0.097; ß2 = 0.257; ß3 = 0.114). Conclusion: Stress related to the COVID-19 pandemic affects family quality of life for children with autism in complex ways. Policies may be developed to enhance parental pragmatic hopefulness in the anti-epidemic victory and alleviate negative physical and mental reactions caused by the pandemic.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , COVID-19 , Child , Humans , Quality of Life , Autism Spectrum Disorder/epidemiology , Pandemics , Autistic Disorder/epidemiology , COVID-19/epidemiology , Parents
5.
PLoS One ; 17(8): e0273932, 2022.
Article in English | MEDLINE | ID: covidwho-2089399

ABSTRACT

BACKGROUND: In the spring of 2020, Belgian authorities enforced a full lockdown period to contain the spread of the SARS-CoV-2 virus. This lockdown drastically disrupted the daily life of autistic individuals' and that of their families. In the midst of these extraordinary circumstances, we assessed the impact of social restrictions on autistic individuals' behavior and their parents' or caregivers' quality of life; we also sought to identify individual characteristics that may influence such changes. METHODS: We designed an online survey targeting caregivers living with an autistic child or adult. The questionnaire included 125 five-point Likert questions which targeted changes in families' quality of life and in autistic individuals' behavior, as well as factors likely to influence the extent and direction of these changes. RESULTS: We collected data from 209 French-speaking Belgian respondents. Respondents reported that the lockdown brought about a higher frequency of nonfunctional socio-communicative behaviors, as well as a decrease in families' quality of life. Parents who had less access to respite care experienced a steeper decrease in their quality of life. Autistic individuals with comorbidities, and whose parents had less access to respite care and implemented fewer rules at home during lockdown were more likely to display nonfunctional socio-communicative behaviors. CONCLUSION: COVID-19 lockdown restrictions had a negative impact on both autistic individuals and their parents.


Subject(s)
Autistic Disorder , COVID-19 , Adult , Autistic Disorder/epidemiology , Belgium/epidemiology , COVID-19/epidemiology , Child , Communicable Disease Control , Humans , Parents , Quality of Life , SARS-CoV-2
6.
Autism Res ; 15(12): 2381-2398, 2022 Dec.
Article in English | MEDLINE | ID: covidwho-2047468

ABSTRACT

Family quality of life (FQoL) outcomes collected during the first year of COVID-19 has been combined with 2018 data to estimate the outbreak's impact on parental outcomes on a sample of 230 families with syndromic autistic children and those with intellectual disabilities (IDs). Despite challenges imposed by the COVID-19 outbreak, our study found that FQoL outcomes reported by participating parents during the first year of COVID-19 appears to be similar to ratings from a prepandemic study of families with the same conditions. Parents of children in our sample generally displayed a stable functioning trajectory as measured by the validated FQoL instrument. Across syndromic autistic groups considered, families reported that their relationships with their children were positive. Our findings provide evidence of families' resilience which might explain the presence of positive parent-child interactions during COVID-19. Exploring mechanisms which would explain how families with autistic and ID children confront, manage disruptive experiences, and buffer COVID-19 induced stress is a fruitful direction for future research.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , COVID-19 , Intellectual Disability , Humans , Parenting , Quality of Life , Intellectual Disability/epidemiology , Autistic Disorder/epidemiology , Pandemics , Parents , Parent-Child Relations
7.
PLoS One ; 17(6): e0267123, 2022.
Article in English | MEDLINE | ID: covidwho-1993462

ABSTRACT

While causing a variety of social restrictions, the COVID-19 pandemic has also precipitated the digitalisation of public services and official procedures, reducing many, until recently necessary, immediate social interactions. This study has been conducted to investigate their perception of the COVID-19 pandemic and its impact on their current and future social interactions. To this end, semi-structured narrative interviews were conducted. Ten adults on the autism spectrum participated in the study. The phenomenological analysis of the narratives focused on categories related to the social functioning of the study participants. The interpretation of the narratives has shown that autistic people can experience a sense of loss due to the lack of direct contact. On the other hand, we also talked to the participants who expressed their satisfaction with the situation of obligatory social distance. The respondents also discussed the subject of changing the form of interaction in some areas of public life to one that is more adjusted to the needs of people with their condition. The study concludes with a suggestion that autistic people might benefit from technological progress in institutions and the availability of the option to prefer online contact for interactions that are not strictly necessary.


Subject(s)
Autistic Disorder , COVID-19 , Adult , Autistic Disorder/epidemiology , COVID-19/epidemiology , Humans , Narration , Pandemics , Social Adjustment
8.
Res Dev Disabil ; 129: 104307, 2022 Oct.
Article in English | MEDLINE | ID: covidwho-1983907

ABSTRACT

BACKGROUND: The current SARS-CoV-2 global pandemic presents a great challenge for governments, health care professionals and the general population. Individuals with autism spectrum disorder (ASD) might be especially vulnerable to restrictions imposed by the crisis. AIM: The objective of the study was to examine the impact of the SARSCoV- 2 pandemic on children with ASD and their families. METHODS AND PROCEDURES: We conducted an online survey two months after the beginning of lock-down (18th of May to 5th of July 2020) in Germany and Austria. We investigated behavioral and emotional changes of children related to the lock-down alongside parental stress and intrafamilial burden OUTCOME AND RESULTS: Of the 216 participating families with an autistic child (mean age: 12.23 years), nearly 50% reported aggravation of autistic symptoms and heightened parental stress. Families reported discontinuation of therapy, more intrafamilial conflicts and increase of psychopharmacological medication of the child. CONCLUSIONS AND IMPLICATIONS: Our report on short-term detrimental effects of the pandemic calls for thorough investigation of long-term sequalae for children and families.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , COVID-19 , Autism Spectrum Disorder/epidemiology , Autism Spectrum Disorder/psychology , Autistic Disorder/epidemiology , COVID-19/epidemiology , Child , Communicable Disease Control , Humans , Pandemics , SARS-CoV-2
9.
Autism Res ; 15(9): 1621-1635, 2022 09.
Article in English | MEDLINE | ID: covidwho-1976689

ABSTRACT

Previous studies have suggested that autistic adults may be negatively affected by the COVID-19 pandemic and its associated restrictions. In this study, we examined continuity and change in loneliness and stress, and their predictors, in 448 autistic and 70 non-autistic adults living in the Netherlands. Autistic participants were assessed on three occasions using the de Jong Gierveld Loneliness Scale and Perceived Stress Scale (pre-lockdown (T0), first lockdown (T1), and second lockdown (T2)); non-autistic participants were assessed twice (T1 and T2). Autistic adults' loneliness and stress levels remained stable across all three time points over 8 months, but were consistently higher than those of non-autistic adults. Other predictors of higher loneliness and stress levels at the first lockdown (T1) included low perceived social support and high levels of COVID-19 related worries. Although loneliness and stress were stable at the group level, the wellbeing of some autistic adults worsened over the course of the pandemic, while others improved. For instance, adults with a mental health diagnosis (other than autism) prior to the pandemic were more likely to increase in stress over time, whereas adults with higher perceived social support were more likely to decrease in stress over time (from T1 to T2). Factors contributing to variability in outcome require further examination. Moreover, the relatively high loneliness and stress levels in autistic adults call for attention from clinicians and service providers. LAY SUMMARY: In our study, autistic adults reported feeling more lonely and stressed than non-autistic adults during the COVID-19 pandemic. People who missed support from their social network also felt more lonely and stressed. On average, people did not change substantially in their degree of loneliness or stress over time. Yet, we noted large person-to-person differences in the wellbeing of autistic adults during the pandemic.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , COVID-19 , Adult , Autistic Disorder/epidemiology , COVID-19/epidemiology , Communicable Disease Control , Humans , Loneliness/psychology , Longitudinal Studies , Pandemics
10.
Autism Res ; 15(8): 1560-1564, 2022 08.
Article in English | MEDLINE | ID: covidwho-1877560

ABSTRACT

Due to uncertainties associated with the COVID-19 public health crisis, several clinical trials had to be withdrawn or postponed. Our investigation aimed to assess the rate of discontinuation of clinical trials focusing on Autism Spectrum Disorder. Of the 197 registered trials included in our systematic review, 15 (7.6%) were discontinued, with nearly half of these explicitly citing COVID-19 as their reason for discontinuation. Pharmacological trials were six times more likely to be discontinued during the pandemic than non-pharmacological studies. The difference between the likelihood of discontinuation was statistically significant (OR: 6.13; 95% CI: 1.22-30.71). There was no evidence of association between funding source and reasons for discontinuation. Limitations, along with implications for future trials are discussed. LAY SUMMARY: We investigated the impact of the COVID-19 pandemic on the discontinuation rate of autism clinical trials. We found that drug trials were six times more likely to be discontinued during the pandemic compared to behavioral, diagnostic, and nutritional trials. The overall discontinuation rate was notably lower in autism clinical trials than in other areas of medical research. We recommend an examination of the methodology of the continued autism trials to assess their applicability in other fields.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , COVID-19 , Autism Spectrum Disorder/epidemiology , Autistic Disorder/epidemiology , Cross-Sectional Studies , Humans , Pandemics
11.
Mol Autism ; 13(1): 23, 2022 05 26.
Article in English | MEDLINE | ID: covidwho-1865310

ABSTRACT

BACKGROUND: Recent research suggests that autistic individuals have shorter lifespans and experience worse health (greater health burden) than non-autistic individuals. Small, qualitative studies suggest that autistic adults also experience poor self-reported healthcare quality. METHODS: An anonymized, cross-sectional, self-report questionnaire was administered to n = 4158 individuals. The study assessed prevalence of chronic health conditions, healthcare quality, differences in overall health inequality score, and effects of the coronavirus pandemic on healthcare quality. We used Fisher's exact tests, binomial logistic regression, and predictive machine learning tools, as appropriate. RESULTS: The final sample included n = 2649 participants (n = 1285 autistic) aged 16-96 years. Autistic adults reported lower quality healthcare than non-autistic adults across 50/51 items, including poorer access to healthcare and poorer communication, alongside increased anxiety, sensory sensitivity, system-level problems, shutdowns, and meltdowns. Differences between groups were stark: aggregated health inequality scores predicted autism diagnosis, even after stratifying by sex. Autistic adults were also more likely to have chronic health conditions than non-autistic adults. There were no significant differences in healthcare quality for autistic adults before and during the pandemic, although they received relatively poorer quality healthcare than non-autistic adults across both periods. LIMITATIONS: The study's sampling methods are not likely to capture the perspectives of all autistic individuals, especially those with intellectual disability. Both the autistic and control samples are biased towards UK residents, white individuals, those assigned female at birth, and those who completed an undergraduate degree or higher education. As such, these results may limit their generalizability to other groups. Finally, these results relate to self-reported differences in healthcare quality between autistic and non-autistic adults. The observed group differences may in part reflect differences in perception and communication rather than differences in actual healthcare quality. CONCLUSIONS: Autistic adults are more likely to have chronic health conditions alongside self-reported lower quality healthcare than others. Health inequalities between these groups are widespread and dramatic; unfortunately, they existed before and have persisted after the onset of the coronavirus pandemic.


Subject(s)
Autistic Disorder , Adult , Autistic Disorder/diagnosis , Autistic Disorder/epidemiology , Cross-Sectional Studies , Delivery of Health Care , Female , Health Status Disparities , Humans , Infant, Newborn , Self Report
13.
Res Dev Disabil ; 125: 104230, 2022 Jun.
Article in English | MEDLINE | ID: covidwho-1763962

ABSTRACT

BACKGROUND: To prevent the spread of Coronavirus-19 a complete lockdown was enforced in India by March, 2020. The lockdown led to drastic negative effects on the social and communicative life of people. Among these, children and adolescents have been majorly affected. The study aims to investigate the effect of lockdown on Indian children with Autism. METHODS AND PROCEDURES: Thirty parents of children with Autism were given questionnaires to rate the performance of their children, pre- and post-lockdown. The questionnaires were analysed for development across activities of daily living (ADL), language and behavioral characteristics along with school and therapy performance. OUTCOME AND RESULTS: The results revealed a significant regression in performance of children post-lockdown which was evident across all the domains assessed. Various additional issues like changes in sleep patterns, inadequate sitting behavior, attention span, concentration, limited eye contact, mood swings, laziness, clumsiness, hyperactivity and impulsivity were also noted post-lockdown, which were not very prominent before lockdown. CONCLUSIONS AND IMPLICATIONS: The study anticipates to help be better prepared for such situations in future. This includes involvement of better intervention which includes home-based training strategies for these children. Moreover, the study highlights impact of online therapy and schooling for children with Autism.


Subject(s)
Autistic Disorder , COVID-19 , Activities of Daily Living , Adolescent , Autistic Disorder/epidemiology , COVID-19/epidemiology , COVID-19/prevention & control , Child , Communicable Disease Control , Communication , Humans
14.
J Psychiatr Res ; 148: 250-257, 2022 04.
Article in English | MEDLINE | ID: covidwho-1700478

ABSTRACT

Resilience is a dynamic process through which people adjust to adversity and buffer anxiety and depression. The COVID-19 global pandemic has introduced a shared source of adversity for people across the world, with detrimental implications for mental health. Despite the pronounced vulnerability of autistic adults to anxiety and depression during the COVID-19 pandemic, relationships among autism-related quantitative traits, resilience, and mental health outcomes have not been examined. As such, we aimed to describe the relationships between these traits in a sample enriched in autism spectrum-related quantitative traits during the COVID-19 pandemic. We also aimed to investigate the impact of demographic and social factors on these relationships. Across three independent samples of adults, we assessed resilience factors, autism-related quantitative traits, anxiety symptoms, and depression symptoms during the COVID-19 pandemic. One sample (recruited via the Autism Spectrum Program of Excellence, n = 201) was enriched for autism traits while the other two (recruited via Amazon Mechanical Turk, n = 624 and Facebook, n = 929) drew from the general population. We found resilience factors and quantitative autism-related traits to be inversely related, regardless of the resilience measure used. Additionally, we found that resilience factors moderate the relationship between autism-related quantitative traits and depression symptoms such that resilience appears to be protective. Across the neurodiversity spectrum, resilience factors may be targets to improve mental health outcomes. This approach may be especially important during the ongoing COVID-19 pandemic and in its aftermath.


Subject(s)
Autistic Disorder , COVID-19 , Adult , Anxiety/epidemiology , Autistic Disorder/epidemiology , Depression/epidemiology , Humans , Outcome Assessment, Health Care , Pandemics , SARS-CoV-2
15.
Int J Environ Res Public Health ; 19(3)2022 Jan 24.
Article in English | MEDLINE | ID: covidwho-1649135

ABSTRACT

While the COVID-19 pandemic is ongoing, early outcome studies indicate severe and pervasive global effects of the pandemic and associated measures to prevent the spread of the virus. General population studies, as well as insight into the outcomes for particular groups, will be necessary in order to mitigate potentially long-term effects as well as to prepare for future epidemics or pandemics. The pandemic conditions have been marked by rapid and abrupt changes and unpredictability which are circumstances that leave the autistic population particularly vulnerable to adverse outcomes following the distinctive features of the diagnosis. Studies are only beginning to delineate the outcomes of the global autism community and the present study adds to these findings by providing a local, multi-perspective, qualitative analysis of the lived experiences of the Swedish autism community. In this study, autistic youth and adults, caregivers of autistic individuals, as well as representatives of Swedish interest organizations were interviewed. Thematic analysis was performed on the population as a whole and patterns of results were formalized according to the International Classification of Function, Disability and Health (ICF-CY). Participants report wide-ranging adverse outcomes of the pandemic relating to mental health and access to support, participation in daily activities and socialization, education, and work as well as parental resources. However, participants also report positive outcomes relating to a reduction in specific social and everyday demands, and normalization of lived experiences. Additionally, interviews outlined some strategies used to cope during pandemic conditions. Implications of these findings are discussed.


Subject(s)
Autistic Disorder , COVID-19 , Adolescent , Adult , Autistic Disorder/epidemiology , Humans , Pandemics , SARS-CoV-2 , Sweden/epidemiology
16.
Eur J Paediatr Neurol ; 36: 151-158, 2022 Jan.
Article in English | MEDLINE | ID: covidwho-1587880

ABSTRACT

BACKGROUND: Among all of the studied potential causes of autism, vaccines have received some of the most scrutiny and have been the topic of many evidence-based studies. These efforts have led the great majority of scientists, physicians, and public health researchers to refute causation between vaccines and autism. RATIONALE: This presumed association and concern has been a major contributor to parents' refusal to immunize their children and has become a major threat to public health in secluded populations over the last two decades, even prior to the COVID-19 pandemic. With the emergence of COVID-19 immunizations, sentiments towards this topic were addressed as a public health concern that may influence the ability to overcome the Corona virus worldwide. SCIENTIFIC REVIEW OF DATA: Despite the overwhelming data demonstrating that there is no link between vaccines and autism, many parents are hesitant to immunize their children because of the alleged association. Other contributing factors to the myths and conspiracy theories surrounding the association between vaccines and autism include the fact that the diagnosis of autism is typically made after the age of receiving the main childhood immunizations, as well as the occasional occurrence of regression after the age of first year vaccinations. In spite of vast evidence that the main contribution to the increase in incidence is from improvement of the diagnostic process, this rapid and publicized rise in autism diagnoses feeds parental concerns regarding any medical intervention that may be associated with the health of their children. RECOMMENDATIONS: It is plausible that with more evidence-based studies linking autism to specific etiologies the myth will diminish and disappear eventually. In an era where conspiracy theories are prevalent on social media, it is critical that evidence-based studies relating autism to specific etiologies be made public, and that information concerning autism diagnosis and causes be made more readily available through social media and parental organizations.


Subject(s)
Autistic Disorder , COVID-19 , Autistic Disorder/epidemiology , Autistic Disorder/etiology , Child , Humans , Pandemics , Parents , SARS-CoV-2 , Vaccination/adverse effects
17.
Autism ; 26(4): 975-987, 2022 05.
Article in English | MEDLINE | ID: covidwho-1367657

ABSTRACT

LAY ABSTRACT: Autistic adults, adults with intellectual disability, and adults with other mental health conditions may have higher risk of contracting COVID-19 or experiencing more severe illness from COVID-19 if infected. We used data from Medicaid to look at whether autistic adults and other adults with intellectual disability and other mental health conditions were more likely to have risk factors for COVID-19, such as living in a residential facility, receiving services regularly in the home from outside caregivers, having had a long hospitalization, having had avoidable hospitalizations, and having high-risk health conditions. We found that autistic adults had higher odds of living in a residential facility, receiving in-home services from outside caregivers, having had an avoidable hospitalization, and having a high-risk health condition, compared to neurotypical adults without mental health conditions. Adults with intellectual disability had similar odds of having these conditions. Adults with other mental health conditions were also more likely to live in a residential facility, receive services from outside caregivers, and have had avoidable hospitalizations compared to the neurotypical population without mental health conditions. They had three times higher odds of having a high-risk health condition. High risk of COVID-19 among autistic adults and adults with intellectual disability and mental health conditions should be recognized by clinicians, and these groups should be prioritized for vaccine outreach.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , COVID-19 , Intellectual Disability , Adult , Autism Spectrum Disorder/epidemiology , Autistic Disorder/epidemiology , COVID-19/epidemiology , Humans , Intellectual Disability/epidemiology , Medicaid , Mental Health , United States/epidemiology
19.
Res Dev Disabil ; 116: 104038, 2021 Sep.
Article in English | MEDLINE | ID: covidwho-1313412

ABSTRACT

BACKGROUND: The COVID-19 pandemic has generated a global crisis that has affected the emotional health of both the general and the clinical population. METHOD: The present study aimed to analyze the differences between the emotional states of a group of individuals with ASD and a neurotypical group both during and after the COVID-19 confinement. The study also examined the changes in autistic symptoms between a group of individuals with ASD who were confined during the COVID-19 pandemic and another group of individuals with ASD who were studied prior to the COVID-19 pandemic period. RESULTS: Higher levels of aggression, irritability, hyperactivity and impulsivity, lack of attention and anxiety, among other symptoms, were found in individuals with ASD during confinement when compared to healthy controls (p < .05; p < .01). Higher levels of repetitive, restrictive, and stereotyped behaviors were also found in pandemic-era ASD individuals when compared to the group of individuals with ASD who were assessed prior to the pandemic (p < .01). CONCLUSIONS: the confinement is related to an increase in symptomatology and dysfunctional behaviours characteristic of ASD, and therefore it is necessary to implement actions that help to reduce this impact now, as well as in future crisis events.


Subject(s)
Autistic Disorder , COVID-19 , Autistic Disorder/epidemiology , Humans , Irritable Mood , Pandemics , SARS-CoV-2
20.
BMJ Open ; 11(6): e045341, 2021 05 17.
Article in English | MEDLINE | ID: covidwho-1232353

ABSTRACT

BACKGROUND: The global COVID-19 pandemic has had an unprecedented impact on European health and social care systems, with demands on testing, hospital and intensive care capacity exceeding available resources in many regions. This has led to concerns that some vulnerable groups, including autistic people, may be excluded from services. METHODS: We reviewed policies from 15 European member states, published in March-July 2020, pertaining to (1) access to COVID-19 tests; (2) provisions for treatment, hospitalisation and intensive care units (ICUs); and (3) changes to standard health and social care. In parallel, we analysed survey data on the lived experiences of 1301 autistic people and caregivers. RESULTS: Autistic people experienced significant barriers when accessing COVID-19 services. First, despite being at elevated risk of severe illness due to co-occurring health conditions, there was a lack of accessibility of COVID-19 testing. Second, many COVID-19 outpatient and inpatient treatment services were reported to be inaccessible, predominantly resulting from individual differences in communication needs. Third, ICU triage protocols in many European countries (directly or indirectly) resulted in discriminatory exclusion from lifesaving treatments. Finally, interruptions to standard health and social care left over 70% of autistic people without everyday support. CONCLUSIONS: The COVID-19 pandemic has further exacerbated existing healthcare inequalities for autistic people, probably contributing to disproportionate increases in morbidity and mortality, mental health and behavioural difficulties, and reduced quality of life. An urgent need exists for policies and guidelines on accessibility of COVID-19 services to be updated to prevent the widespread exclusion of autistic people from services, which represents a violation of international human rights law.


Subject(s)
Autistic Disorder , COVID-19 , Autistic Disorder/epidemiology , Autistic Disorder/therapy , COVID-19 Testing , Europe , Health Services Accessibility , Humans , Pandemics , Policy , Quality of Life , SARS-CoV-2 , Social Support
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