Vaccine refusal risk factors among parents of children with autism spectrum disorders.

BACKGROUND: Vaccine refusal is a global trend and was announced as one of the top ten health threats in recent years. The rate of vaccine refusal (VR) among children with autism spectrum disorders (ASD) has also increased in parallel with the global trend but their vaccination behavior may differ from that of the normal population. This study aims to determine the VR rates among parents of children with ASD, to define the risk factors for developing VR, and to evaluate the parental concerns for childhood vaccinations in this susceptible population. METHODS: We conducted a 4-part survey questionnaire among parents of children with ASD, evaluating the vaccination status for both the child with ASD and their younger sibling. The vaccination uptake of the first child was accepted as the `baseline` behavior, while the following sibling`s uptake was suggested as the `current` behavior. The risk factors of VR were determined with logistic regression analysis. RESULTS: The study group included 110 parents of children with ASD (M/F:76/34) and their younger siblings (M/F:57/53). The rate of `baseline VR` was 12.7 % whereas the `current VR` was 40% (p=0.001). High socioeconomic status (relative risk [RR]: 4.4; 95% confidence interval [CI]: 1.01-16.6; p=0.04), using social media as the main source of information (RR: 7; 95% CI: 1.5-32; p= 0.01) and lack of regular well-child visits of the sibling (RR: 25; 95% CI 4.1-166; p=0.001) were determined as risk factors for VR. CONCLUSIONS: The vaccination behavior of parents changed after having a child with ASD, and thus, the younger siblings may constitute a risk group for VR. In clinical practice, pediatricians should be aware of this risk and evaluate the vaccination uptake of the younger siblings of children with ASD more carefully. Regular well-child visits and improving media literacy may be the key points to prevent VR in this susceptible population.

Parental stress and support perception in southern Italy's households with intellectual disabilities and/or autistic spectrum disorder before and during the COVID-19 pandemic.

The stress experienced by parents of persons with Intellectual Disability (ID) and Autism Spectrum Disorder (ASD) is higher than that of parents of neurotypical children (TD). An important protective factor is the perception of the support received within the family and the social network. The emergency of the COVID-19 pandemic had a negative impact on the health of people with ASD/ID and their families. The aim of the study was to describe the levels of parental stress and anxiety before and during the lockdown in southern Italy's families with ASD/ID persons and analyze how the levels of support perceived by these families. 106 parents, the ages of 23 and 74 years (M = 45; SD = 9), from southern Italy responded to an online battery of questionnaires measuring parental stress, anxiety, perception of support and attendance at school activities and rehabilitation centers, before and during lockdown. In addition, descriptive, Chi-Square, MANOVA, ANOVAs, and correlational analyses were conducted. The results showed that during the lockdown, attendance at therapies and extra-moenia activities and participation in school activities drastically dropped. During lockdown, parents felt inadequate. The parental stress and anxiety were moderate, but the perception of support dropped significantly.

An approach for prevention planning based on the prevalence and comorbidity of neurodevelopmental disorders in 6-year-old children receiving primary care consultations on the island of Menorca.

BACKGROUND: Few studies have estimated the real prevalence of neurodevelopmental disorders according to the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) in Spain and worldwide. However, there are disparate prevalence figures. We consider research in this field essential to improve early detection, secondary prevention, and health planning. METHODS: The Minikid ADHD and TICS-Mini International Neuropsychiatric Interview for Children and Adolescents, the Autism Spectrum Quotient (Children's version, AQ- Child) and a protocol of general medical questions were administered for screening purposes. The PROLEXIA battery for children aged from 4 to 6 years was used for direct assessments. Parents provided information on emotional, medical, and school aspects. The final population evaluated using these tools consisted of 291 6-year-old subjects. RESULTS: The overall risk of presenting with a neurodevelopmental disorder was 55.4%. A 23.4% risk of presenting with attention-deficit/hyperactivity disorder (ADHD) in any modality (inattentive, hyperactive-impulsive and combined), a 2.8% risk of developing autism spectrum disorder (ASD), a 30.6% risk of presenting with a learning disorder with reading difficulties, a 5.5% risk of tics and a 22.5% risk of language problems (incomprehensible language or minor language problems) were detected in the sample. The most common combination of disorders was learning and language difficulties, accounting for 6.9% of the sample. The second most frequent combination was the presence of learning and language difficulties and ADHD, accounting for 4.5% of the sample. CONCLUSIONS: The prevalence of risks detected in our sample seems to be consistent with national and international studies. A significant proportion of our sample had never been previously diagnosed (85%), so early detection programs are recommended.

Cohort-guided insights into gene-environment interactions in autism spectrum disorders.

Prospective birth cohorts offer unprecedented opportunities to investigate the pathogenesis of complex disorders such as autism, in which gene-environment interactions must be appreciated in a temporal context. This Perspective article considers the history of autism research, including missteps that reflected an incomplete understanding of the epidemiology of autistic spectrum disorders, the effects of advocacy and philanthropy on the trajectory of scientific inquiry, and the current and future roles of prospective birth cohort research in illuminating the pathology of these and other complex disorders wherein exposures during gestation might not manifest until later in life.

Early Identification of Autism Spectrum Disorder Among Children Aged 4 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020.

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.

Technologies to support the diagnosis and/or treatment of neurodevelopmental disorders: A systematic review.

In recent years, there has been a great interest in utilizing technology in mental health research. The rapid technological development has encouraged researchers to apply technology as a part of a diagnostic process or treatment of Neurodevelopmental Disorders (NDDs). With the large number of studies being published comes an urgent need to inform clinicians and researchers about the latest advances in this field. Here, we methodically explore and summarize findings from studies published between August 2019 and February 2022. A search strategy led to the identification of 4108 records from PubMed and APA PsycInfo databases. 221 quantitative studies were included, covering a wide range of technologies used for diagnosis and/or treatment of NDDs, with the biggest focus on Autism Spectrum Disorder (ASD). The most popular technologies included machine learning, functional magnetic resonance imaging, electroencephalogram, magnetic resonance imaging, and neurofeedback. The results of the review indicate that technology-based diagnosis and intervention for NDD population is promising. However, given a high risk of bias of many studies, more high-quality research is needed.

Preventive practices and parents' psychological health of children with disabilities after COVID-19 lockdown in Pakistan.

AIM: To find out differences in mental health outcomes between parents of children with different disabilities due to COVID-19 by determining the relationship between preventive practices, fear and stress in parents of disabled children. METHODS: A sample of 213 parents, whose children with disabilities (age range 1-16 years) were previously on regular follow-up before pandemic but did not take therapy for 1 year or more during COVID-19 lockdown and resumed sessions after a gap period, was surveyed. Perceived stress scale, fear and adherence to preventive measures questionnaire (developed by researchers) were used to measure stress, fear response of parents due to COVID-19 and preventive measures practiced by disabled children respectively. RESULTS: Parents who had financial difficulties and believed their disabled children had more chance of getting COVID-19 were more stressed. Parents who received any help from community/government were less stressed. One-way analysis of variance showed parents of cerebral palsy (CP) children reported more stress of COVID-19 as compared to parents of autism spectrum disorder (ASD), global developmental delay (GDD) and intellectual disability (ID). Parents of ID children reported more stress than ASD. Parents of CP children had more fear of loss of family members or getting infected with COVID-19 than GDD parents. ASD, GDD and CP children adhered more to preventive measures than ID children; however, CP children adhered more to preventive measures than GDD children. CONCLUSION: COVID-19 lockdown has persisting impact on mental health of parents of disabled children. Those parents experienced increased levels of stress and fear but reported adherence to preventive measures depending on the child's disability.

CRISIS AFAR: an international collaborative study of the impact of the COVID-19 pandemic on mental health and service access in youth with autism and neurodevelopmental conditions.

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.

The Impacts of the COVID-19 Pandemic on Therapy Utilization Among Racially/Ethnically and Socio-Economically Diverse Autistic Children.

PURPOSE: The purpose of current study was to evaluate change in hours of Applied Behavior Analysis (ABA) therapy utilization for autistic children during the year prior to the COVID-19 pandemic, the first three months of the pandemic (crisis phase), and the following 9 months of the pandemic (mitigation phase). Additionally, this study aimed to evaluate if change in therapy utilization differed based on child race, ethnicity, and primary payer of services. Finally, we aimed to identify potential mechanisms of ABA therapy disruption by interpreting findings using an extended version of Donabedian's structure-process-outcome model. METHODS: Retrospective clinical data on client demographics and therapy utilization (n = 283) were collected from ABA clinics in California and analyzed with four piecewise growth multi-level models. RESULTS: We found that therapy utilization dropped during the first three months of the pandemic (-10.65 h/month; p < .001) and increased during the following 9 months (2.39 h/month; p < .001). Moderator analyses revelated that Asian, Non-Latinx and school-district funded children had significantly different trajectories of change in therapy utilization compared to white, non-Latinx participants and private insurance funded participants, respectively. CONCLUSION: Findings suggest that utilization of ABA therapy was disrupted for a full year following the onset of the COVID-19 pandemic and that child race/ethnicity and primary payer influenced the degree to which autistic children were impacted by service disruption. These findings have implications for autistic children who lost therapy access during key developmental periods and for the ABA care delivery system.

Prevalence of Autism Spectrum Disorder in the United States is Stable in the COVID-19 Era.

Although the United States (US) have been monitoring the autism spectrum disorder (ASD) prevalence, whether the prevalence has continued to increase, decrease, fluctuate or reached a stable level remained unclear during the COVID-19 pandemic. We have requested the 2016-2021 National Survey of Children's Health (NSCH) data in the United States to estimate weighted ASD prevalence and assess linearity/nonlinearity in the time trend. We did not observe linear or nonlinear trends of the ASD prevalence during the 2016-2021 periods. The current ASD prevalence experienced a 0.3% drop from 2019 to 2020 but a 0.3% uptick in 2021, suggesting a stable trend during the COVID-19 pandemic. Our findings shed lights on the need for the modified strategy of monitor ASD prevalence during the COVID-19 era.

Mental-health before and during the COVID-19 pandemic in adults with neurodevelopmental disorders.

The COVID-19 pandemic negatively impacted mental health globally. Individuals with neurodevelopmental disorders (NDDs), including autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD), are at elevated risk of mental health difficulties. We investigated the impact of the pandemic on anxiety, depression and mental wellbeing in adults with NDDs using data from the Avon Longitudinal Study of Parents and Children (n = 3058). Mental health data were collected pre-pandemic (age 21-25) and at three timepoints during the pandemic (ages 27-28) using the Short Mood and Feelings Questionnaire, Generalized Anxiety Disorder Assessment-7, and Warwick Edinburgh Mental Wellbeing Scale. ADHD and ASD were defined using validated cut-points of the Strengths and Difficulties Questionnaire and Autism Spectrum Quotient, self-reported at age 25. We used multi-level mixed-effects models to investigate changes in mental health in those with elevated ADHD/ASD traits compared to those without. Prevalences of depression, anxiety and poor mental wellbeing were higher at all timepoints (pre-pandemic and during pandemic) in those with ADHD and ASD compared to those without. Anxiety increased to a greater extent in those with ADHD (ß = 0.8 [0.2,1.4], p = 0.01) and ASD (ß = 1.2 [-0.1,2.5], p = 0.07), while depression symptoms decreased, particularly in females with ASD (ß = -3.1 [-4.6,-1.5], p = 0.0001). On average, mental wellbeing decreased in all, but to a lesser extent in those with ADHD (ß = 1.3 [0.2,2.5], p = 0.03) and females with ASD (ß = 3.0 [0.2,5.9], p = 0.04). To conclude, anxiety disproportionately increased in adults with NDDs during the pandemic, however, the related lockdowns may have provided a protective environment for depressive symptoms in the same individuals.

Adaptive behaviour in children exposed to topiramate in the womb: An observational cohort study.

OBJECTIVE: Many women with epilepsy need to continue anti-seizure medications (ASMs) throughout pregnancy. The current study investigated adaptive behaviour outcomes in children exposed to topiramate in the womb. METHOD: An observational, cross-sectional study was designed, recruiting mother-child-pairs from the UK Epilepsy and Pregnancy Register (UKEPR). Health, developmental histories and Vineland Adaptive Behaviour Scale-Third Edition (VABS-III) assessments were administered via telephone by a blinded researcher, supplemented with prospectively collected pregnancy and medication information. Topiramate monotherapy exposed children were compared to VABS-III normative data as recruitment was disrupted by the COVID-19 pandemic. RESULTS: Thirty-four women with epilepsy from 135 (25%) initially agreed to participate in the study, of whom 26 women completed telephone interviews about their children (n = 28). Children ranged from 2.5 to 17 years of age at the time of assessment. Six topiramate-exposed children were born small for gestational age, and there were significant associations between birthweight, dose and VABS-III scores. Significantly lower scores were observed in topiramate-exposed children (n = 21) with a significant dose-response relationship established after adjustment for parental educational level. Daily mean dosage was 280.21 mg, with high dosages of topiramate associated with a 12-point reduction in VABS-III scores. Additionally, four topiramate-exposed children (19.05%) had diagnoses of Autism Spectrum Disorder, which was significantly higher than UK prevalence rates (1.1%). CONCLUSIONS: The findings of poorer adaptive behaviour, higher incidence of ASD and associations with birth weight are of concern and require further validation and replication using larger prospectively-recruited samples and comparator cohorts. Implications for research and clinical practice are discussed.

Tele-assessment of young children referred for autism spectrum disorder evaluation during COVID-19: Associations among clinical characteristics and diagnostic outcome.

LAY ABSTRACT: The diagnosis of autism spectrum disorder (ASD) has traditionally been made through in-person evaluation. While the COVID-19 pandemic disrupted access to ASD services, there has been remarkable growth in research focused on novel ASD diagnostic practices, including the use of telemedicine. We implemented a standard ASD tele-assessment evaluation procedure, including use of a novel remote clinician-coached, caregiver-delivered ASD assessment tool (TELE-ASD-PEDS; TAP), with the goal of continuing to provide diagnostic services to young children and their families during the pandemic. We examined the relationship between child characteristics and diagnostic outcome for 335 children, ages 14-78 months, who received ASD tele-assessment conducted by psychologists and pediatricians in an outpatient clinic of a Midwestern academic medical center. We found that clinicians could make a determination about ASD diagnosis for most children (85%) evaluated using tele-assessment. Child clinical characteristics, including TAP scores and clinician ratings of ASD symptoms, were related to diagnostic outcome (i.e. diagnosis of ASD, no ASD, and Unsure about ASD). When all clinical characteristics were examined together, the presence of specific repetitive behaviors predicted ASD diagnosis. We also found that the TAP is effective for making an ASD diagnosis when used as part of comprehensive tele-assessment evaluation in children ⩾ 36 months of age with delayed language. Our study adds to an increasing body of research supporting use of tele-assessment for diagnosis of ASD. Although further research is needed, telemedicine may help families from different backgrounds and geographic locations to access high-quality diagnostic services.

Parents' pandemic stress, parental involvement, and family quality of life for children with autism.

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.

The Challenges of Caregivers of Children with Autism Spectrum Disorders Comorbidity during the COVID-19 Pandemic in Serbia.

BACKGROUND: Children with Autism Spectrum Disorders (ASD) experience significantly higher prevalence of other mental disorders, which amplifies their need for overall support. The outbreak of novel coronavirus (COVID-19) resulted in restrictions and limited access to different services with great challenge for families and children with ASD. SUBJECTS AND METHODS: We used an electronic SurveyMonkey questionnaire to examine the experiences of 114 caregivers of children with ASD. We compared: (a) level of support by the child's school, changes in child behavior, and priority needs for families of ASD and ASD with comorbidities (ASD+) children, during pandemic, and (b) developmental history and diagnosis for ASD and ASD+ children before the pandemic. RESULTS: Our research shows significant behavioral difficulties in the population with ASD and ASD+ that arose in the field of altered living conditions and overall functioning during the COVID-19 pandemic. Statistically significant results comparing ASD to ASD+ children we found in area of getting additional help and support before the outbreak of the pandemic (47.1% vs 16.0%, p=0.002), as well as in worsening of sleep problems, statistically significant more common in children with ASD+ (ASD+ 47.7% vs. ASD 25.7%, p=0.046). CONCLUSIONS: Our findings can contribute to the faster development and implementation of protocols for dealing with situations such as pandemics, related to the vulnerable population of children with ASD and their caregivers.

Mental health issues in parents of children with autism spectrum disorder: A multi-time-point study related to COVID-19 pandemic.

Given the unpredictability and challenges brought about by the 2019 novel coronavirus (COVID-19) pandemic, this study aimed to investigate the impact trend of the prolonged pandemic on the mental health of parents of children with autism spectrum disorder (ASD). The 8112 participants included parents of children with ASD and parents of typically developing (TD) children at two sites (Heilongjiang and Fujian province, China). The parents completed a set of self-report questionnaires covering demographic characteristics, influences related to COVID-19, COVID-19 concerns and perceived behaviors, as well as the Connor-Davidson resilience scale (CD-RISC), self-rating anxiety scale (SAS), and self-rating depression scale (SDS) by means of an online survey platform. Data were collected by three cross-sectional surveys carried out in April 2020 (Time 1), October 2020 (Time 2), and October 2021 (Time 3). The results of quantitative and qualitative comparisons showed that: (i) parents of children with ASD had lower levels of resilience, and more symptoms of anxiety and depression than parents of TD children at each time point (all P < 0.05); and (ii) there were significant time-cumulative changes in resilience, anxiety, and depression among all participants (all P < 0.05). The logistic regression analyzes after adjusting for demographic characteristics revealed that the following factors were significantly associated with poor resilience and a higher rate of anxiety and depression in parents of children with ASD: time-point, the effect of COVID-19 on children's emotions and parents' emotions, changes in relationships, changes in physical exercise, changes in daily diet during the COVID-19 pandemic, and COVID-19-related psychological distress. In conclusions, the parents did not report improvements in resilience, anxiety, or depression symptoms from Time 1 to Time 2 or 3, indicating that cumulative mental health issues increased when, surprisingly, the COVID-19 restrictions were eased. The psychological harm resulting from the COVID-19 pandemic is far-reaching, especially among parents of children with ASD.

Changes in Mental Health during Three Waves of the COVID-19 Pandemic in Slovakia: Neurotypical Children versus Children with Autism Spectrum Disorder and Their Parents.

The main goal of our research was to monitor changes in the mental health of Slovak families with children with autism spectrum disorder (ASD) compared to families with neurotypical children during three waves of the COVID-19 pandemic. We focused on the prevalence of depression, anxiety, stress and different stressors of parents. In children, we explored maladaptive behavior and the availability of interventions for children with ASD. The data were collected using an extensive questionnaire including the Depression, Anxiety, and Stress Scale-42 questionnaire (DASS-42) and two subscales of the Vineland Adaptive Behavior Scales (VABS-3). The research sample consisted of a total of 506 parents, 236 of whom have a child with ASD. Parents of children with ASD reported elevated anxiety during the first wave, while changes were found in parents of neurotypical children. During the second wave, the prevalence of anxiety, depression and stress experienced by parents in both groups increased, but significantly more in parents with ASD children. The internalizing maladaptive behavior of children with ASD also increased. During the third wave, no significant differences between the groups of parents were found in stress and anxiety, but parents of ASD children scored higher in depression. Externalized maladaptive behavior of neurotypical children increased, with minimal changes in children with ASD, which can be explained by the improved therapy availability for children with ASD, also observed in our study.

Adaptive response of Italian young adults with autism to the COVID-19 pandemic: A longitudinal study.

The COVID-19 pandemic has represented a hazardous situation for individuals with Autism Spectrum Disorder (ASD) and their families. The difficulties, following the COVID-19-derived lockdown, have involved working from home or loss of employment, and the demands of looking after their children without the daily support of specialists. The aim of this study was to evaluate the adaptive behaviour of young adult participants with ASD after the enforcement of lockdown measures in March 2020 in a specialised centre in central Italy, by administering the Italian form of the Vineland Adaptive Behaviour Scales Second Edition (VABS-II), at baseline as well as 6 months and 1 year after the lockdown. Participants with ASD who were not able to access their normal, in-person care - they were only followed at a distance (i.e. telehealth) - declined dramatically in their adaptive behaviour during the first months after the lockdown for some VABS-II dimensions such as the socialisation and daily living domains. The effects of the lockdown on adaptive behaviour remained after 1 year. Our results emphasise the need for immediate, continuous and personal support for people with ASD during and after the restrictions caused by the COVID-19 pandemic, in order to ensure at least partial recovery of adaptive functioning.

The impact of lockdown on young people with genetic neurodevelopmental disabilities: a study with the international participatory database GenIDA.

BACKGROUND: Previous publications suggested that lockdown is likely to impact daily living issues of individuals with intellectual disabilities. The authors notably suspected an intensification of behavioural, eating and sleep problems. METHODS: To test these hypotheses, we conducted an international online survey about the impact of COVID-19-associated first lockdown on people with genetic neurodevelopmental disorders. This survey was carried out using GenIDA, an international participatory database collecting medical information on genetic neurodevelopmental disorders. Patients' relatives took part in this online survey from 30/04/2020 to 09/06/2020. This survey adapted from GenIDA standard questionnaire requested information on diagnosis, lifestyle and was based on yes/no answers to questions regarding behaviour, diet, and sleep, in the 6-months period before lockdown and during lockdown. We also asked relatives to evaluate the intensity of these problems by severity level. Finally, relatives could freely comment in open fields on the medical and/or quality of life problems they had encountered during lockdown. RESULTS: In total 199 participants-144 children and 45 adults-with neurodevelopmental disorders (intellectual disability (79.4%) and/or autism spectrum disorder (21.6%)) of various genetic origins, with near-equal male/female (96/103) contribution and originating mainly from Europe and Northern America, were included. The average lockdown duration at time of the survey was 57 days. We did not find differences in the frequency of behavioural, eating and sleep problems before and during lockdown. Moreover, there was no apparent difference in the intensity of eating and sleep disorders between both periods. However, for persons with behavioural problems at both periods, relatives reported an increase in aggressivity, self-aggressivity, depressiveness, stereotypies, and restricted interests during lockdown, all of which might be interpreted as consequences of a lack of stimulation or a reaction to unexpected changes in daily habits. CONCLUSIONS: Our results support previous studies that suggest that the negative impact of lockdown does not depend on the intellectual disability per se but on the associated comorbidities such as behavioural disorders. This study addresses the need for prevention of behavioural disturbance in the vulnerable population with genetic neurodevelopmental disabilities.

The impact of COVID-19 on individuals with ASD in the US: Parent perspectives on social and support concerns.

The COVID-19 pandemic's disruptions to daily routines and services have proven especially challenging for children with autism spectrum disorder (ASD) and their families. The current retrospective study aimed to determine the impact of the COVID-19 pandemic's social environmental changes on parental ratings of personal and child concerns about family conflict, opportunities for social interaction, and loss of institutional support (school and therapy services). Analyses of responses from families with ASD in the US determined differences in concerns across three time points which were measured simultaneously: prior to COVID-19, at the start of COVID-19, and at the time of survey completion. From our sample of 246 school-aged children, parents retrospectively reported significantly increasing levels of concern for both themselves and their children over time, with parents' personal concern levels rated consistently higher than their ratings of their child's level of concern. Concerns about loss of institutional support were higher for parents of children reported as having co-occurring intellectual disability. Further, parents of younger children also reported more concerns about loss of services, as well as more social concerns. For parent ratings of child concerns, children who were reportedly aware of COVID-19 were determined to have higher levels of social concerns and concerns about loss of institutional support. Meanwhile, the child's age and gender did not impact their parent ratings of child concerns. The increased level of parental and child-perceived concerns over the course of the pandemic suggests a need for improved service delivery and support for these families. The high levels of concerns observed in the current study provide support for the need to assess families' priorities and tailor services to best meet families' needs. This will potentially increase the quality of life of family members, and improve ASD services across the lifespan, and improve outcomes.