Containment, involving separation and restriction of movement of people due to the COVID-19 pandemic, and mitigation, also referred to as lockdown, involving closure of schools, universities and ...public venues, has had a profound impact on people's lives globally. The study focuses on the effects of containment and mitigation measures, on the behavior of children and youth (CaY) with Autism Spectrum Disorders (ASD). The study primary aim was to examine the impact of these urgent measures on the behaviors, communication, sleep, and nutritional status of the CaY. A secondary aim was to explore risk and protective factors on behavior change including sociodemographic variables, living conditions, ASD symptom severity and continuity of interventions.
The study sample consisted of 239 ASD subjects, 2–21 years of age, enrolled in the ELENA cohort in France at Stage 3 confinement and mitigation measures announced on March 16, 2020. A parent informant completed the COVID-19 questionnaire.
Of the domains examined, challenging behaviors, communicative skills and sleep had the greatest impact; in terms of risk and protective factors, subject age, ASD severity, single parenthood, daily living skills, and intervention continuity were most likely to impact behaviors; living conditions were not linked to behavior change.
The findings highlight the topography of behavioral change in CaY with ASD following institution of containment and mitigation measures during the COVID-19 pandemic and help identify risk and protective factors to help better address needs and tailor interventions in the future.
•Large parental survey from a well-characterized cohort of children with ASD.•Confinement due to COVID-19 pandemic involving both negative and positive effects.•Worsening of sleep and challenging or stereotyped behaviors during confinement.•Improvement of communication for one third of the children during confinement.•Risk factors: older age, high autism severity, single parent family, interrupted specialized interventions.
Purpose To study the impact of autism spectrum disorders (ASDs) on parental quality of life (QoL) at adolescence using the parental–developmental disorders-quality of life scale (Par–DD-QoL). Methods ...One hundred and fifty-two mothers of adolescents with ASD completed Par–DD-QoL. This scale assesses the following dimensions: emotional, daily disturbance and global QoL. This cross-sectional study uses a subset of data collected at the final time of a follow-up study (EpiTED cohort). Results A polytomic regression identified an increase in aberrant behavior scores as the major independent risk factor for parental QoL. The identified protective factors were the increase in daily living, communication and object cognition scores and a higher number of siblings. Conclusions Those results suggest that there is a negative effect of externalizing behaviors and a protective effect of adaptive skills, communication and object cognition on parental QoL. Study limitations and implications are discussed.
There is limited data on long-term outcome of ASD with co-occurring intellectual disabilities (ID) and challenging behaviours in France. The EpiTED period cohort is a 15 years longitudinal study of ...the developmental trajectories of 281 children initially recruited at mean age of 5 years. Two contrasted developmental trajectories were identified. Low cognitive level, absence of language, and higher ASD scores at baseline were predictive of low growth at follow-up. As adults the participants were predisposed to persistent co-occurring challenging behaviours as well as underlying ID impacting their ability to function independently. The results underscore the need for development of services and supports for adults with ASD in France who may also have already lacked access to adequate interventions and support services.
Early diagnosis of autism spectrum disorder is challenging due to its phenotypic and etiological heterogeneity, but critical for implementation of early interventions. We examined the age of autism ...spectrum disorder diagnosis in a sample of 554 children and adolescents enrolled in the ELENA cohort study in France with regard to the influences of child clinical characteristics, family antecedents, and socio-economic factors. The mean age of diagnosis was 4.9 years (±2.8 years) with prediction of diagnosis before 3 years of age related to co-occurring intellectual disability, higher autism spectrum disorder symptom severity, and lower communicative abilities. Children in low socio-economic status families tended to have earlier autism spectrum disorder diagnosis compared to those in high socio-economic status families, but they also had greater severity of intellectual impairment. The age of autism spectrum disorder diagnosis was not associated with the presence of an older sibling with autism spectrum disorder. The trend for an inverse relationship between socio-economic status and age of diagnosis suggests equity in the current diagnostic services in France where health coverage is universal and free. Nonetheless, better screening of more subtle/less severe forms of autism spectrum disorder is also needed, as well as further assessment of the link between co-occurrence of autism spectrum disorder and severity of intellectual impairment in lower socio-economic status families.
Lay Abstract
Autism spectrum disorder is an early onset neurodevelopmental disorder and diagnosis can be made as early as 18 months of age. Early diagnosis of autism spectrum disorder is critical as it leads to early intervention. Age of autism spectrum disorder diagnosis has been linked to the child profile as autism spectrum disorder is characterized by strong heterogeneity, but is also influenced by socio-economic factors. There is paucity of data on age of diagnosis of autism spectrum disorder in France. We therefore examined the age of autism spectrum disorder diagnosis in 554 children and adolescents enrolled in the ELENA cohort study with respect to the influences of child profile, family antecedents, and socio-economic factors. The mean age of diagnosis was 4.9 years (±2.8 years). Early diagnosis, before 3 years of age, was related to the co-occurrence of intellectual disability, higher autism spectrum disorder symptom severity, and lower communicative abilities. Children in low socio-economic status families tended to have an earlier diagnosis, but these children also had greater degree of intellectual impairment compared to children in high socio-economic status families. The age of autism spectrum disorder diagnosis was not associated with the presence of an older sibling with autism spectrum disorder. The observed current trend of an inverse relationship between socio-economic status and age of diagnosis of autism spectrum disorder suggests equitable access to autism spectrum disorder services in France where health coverage is universal and free. Better screening of more subtle/less severe forms of autism spectrum disorder is needed, as well as further assessment of the link between the co-occurrence of autism spectrum disorder and intellectual impairment in children in lower socio-economic status families.
Objectives
Autism spectrum disorder (ASD) has a major impact on caregivers. We aimed to describe caregivers’ perceptions concerning their level of knowledge about ASD and their needs to better adapt ...education and training programs.
Methods
This was a descriptive cross-sectional study conducted through a declarative and self-administered survey in France.
Results
1,013 individuals answered the questionnaire in 2020. If most caregivers felt they had sufficient knowledge about ASD, they still expressed a high level of needs regarding acquiring knowledge, identifying available resources, and finding social/emotional support.
Conclusions
This study highlights the high level of needs of caregivers and their expectations of improving their knowledge and skills to help the person with ASD.
The impact of ASD on parental QOL was evaluated in the EpiTED cohort study at early adulthood. Two-third of parents of young adults with ASD (66.7%) reported that their QoL was at least moderately ...altered. The perceived impact of ASD on parental QoL was related to the young adults’ level of adaptive skills, as well as to symptom severity and the presence of challenging behaviors, which appeared to be the main risk factor. The study of change between adolescence and early adulthood showed that parents whose children had a decrease in challenging behaviors perceived a decreased impact on their QoL. These results argue for the importance to propose specific interventions to target associated challenging behaviors in ASD.
Parents and clinicians report difficulties in pain assessment in children with autism because of sociocommunicative deficits. This study shows that children with autism spectrum disorders are at ...least as reactive to pain during venipuncture as developmentally delayed and typically developing children.
There is a lack of knowledge about pain reactions in children with autism spectrum disorders (ASD), who have often been considered as insensitive to pain. The objective of this study was to describe the facial, behavioral and physiological reactions of children with ASD during venipuncture and to compare them to the reactions of children with an intellectual disability and nonimpaired control children. We also examined the relation between developmental age and pain reactions. The sample included 35 children with ASD, 32 children with an intellectual disability, and 36 nonimpaired children. The children were videotaped during venipuncture and their heart rate was recorded. Facial reactions were assessed using the Child Facial Coding System (CFCS) and behavioral reactions were scored using the Noncommunicating Children’s Pain Checklist (NCCPC). A linear mixed-effects model showed that children’s reactions increased between baseline and venipuncture and decreased between the end of venipuncture and the recovery period. There was no significant difference between groups regarding the amount of facial, behavioral and physiological reactions. However, behavioral reactions seemed to remain high in children with ASD after the end of the venipuncture, in contrast with children in the 2 other groups. Moreover, we observed a significant decrease in pain expression with age in nonimpaired children, but no such effect was found regarding children with ASD. The data reveal that children with ASD displayed a significant pain reaction in this situation and tend to recover more slowly after the painful experience. Improvement in pain assessment and management in this population is necessary.
The literature on sex related-clinical differences for children with autism spectrum disorder (ASD) is highly contradictory, whereas this topic has major clinical implications. We aimed to ...investigate sex-related clinical differences in children with ASD without intellectual disability (ID).
We compared 319 boys and 65 girls with ASD without ID, aged from 2 to 12 years, recruited from a multiregional cohort on their clinical profiles based on the scores for the Vineland-II, the SRS-2, the ADOS calibrated severity score, sensory processing, aberrant behaviors, and comorbidity rates.
Our results confirm a high sex ratio of 4.9 males/females. Many similarities were found in the clinical profiles. However, we found that girls had higher SRS-2 total scores. In addition, there was a negative correlation between the SRS-2 total score and the intellectual quotient level (IQ) for girls only.
We confirm the higher rates of boys with ASD without ID. A comparison between the girls and boys showed them to have similar clinical profiles, except for the SRS- 2 total scores, which were higher among girls, suggesting more severe social impairment perceived by parents. Our findings that the cognitive level is related to ASD severity in girls should be taken into account during the diagnostic procedure in the clinical interpretation of gold-standard measures of ASD, and additional clinical observations are necessary.
ClinicalTrials.gov, identifier NCT02625116s.
ASD in a child affects parental mental health, with elevated levels of stress, anxiety and depression reported in parents.
In this study, we examined mothers' and fathers' stress, anxiety and ...depression, as well as their coping strategies in a sample of 103 children and adolescents enrolled in the ELENA cohort study in France at diagnosis and three years after diagnosis.
Results showed that mothers had higher levels of stress and anxiety / depression than fathers and used more social support coping strategies at diagnosis, which might be explained by increased levels of parental involvement. Mothers’ stress level significantly decreased during the three years following ASD diagnosis but no such decrease was observed in fathers’ stress level. A significant decrease in anxiety and depression was observed for both parents, suggesting that parental distress is particularly elevated during the critical diagnosis period. Results finally yielded a significant decrease in emotion-focused coping strategy in mothers over the three-year period, an ineffective strategy that takes places at the time of diagnosis but then decreases during the period following ASD diagnosis, in relation to the acceptance process.
Implications in terms of addressing the unmet mental health needs of parents and their coping strategies are discussed.
•Mothers of a child with ASD have higher levels of stress than fathers at diagnosis.•In both parents, anxiety and depression levels decreased three years after ASD diagnosis.•Mothers use more social support coping strategy than fathers at diagnosis.•Mothers’ emotion focused strategy decreased during the three years following ASD diagnosis.
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