Fifteen-Year Prospective Follow-Up Study of Adult Outcomes of Autism Spectrum Disorders Among Children Attending Centers in Five Regional Departments in France: The EpiTED Cohort

International audienceThere 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

School Inclusion in Children and Adolescents with Autism Spectrum Disorders in France: Report from the ELENA French Cohort Study

International audienceChildren and adolescents with ASD are increasingly included in regular school settings, however little is known about how placement decisions are made. In the present study, we examined the types and duration of school attendance among children and adolescents in the ELENA Cohort, a multi-center study of children and adolescents with ASD, ages 2-16 years, in France. Results showed that 88% of subjects were attending school and that children and adolescents with more severe adaptive and cognitive deficits were less likely to attend school. The results provide a topography on school inclusion and ASD in France. Challenging behaviors and sensory processing difficulties were associated with partial-inclusion; and co-occurring anxiety symptoms were associated with inclusion on a full-time basis

Etudes des modalités d’expression de la douleur chez les enfants avec troubles envahissants du développement.

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Autisme et douleur – analyse bibliographique

International audienceThe purpose of the present article was to assess the available literature concerning pain and autism. First, authors summarized the published articles on pain reactivity in people with autism. Second, the hypotheses envisaged to explain the presence of expressive particularities in people with autism spectrum disorders were reviewed; these included endogenous opioid excess theory, sensorial abnormalities and sociocommunicative deficit. Finally, the present review dealt with the tools available to assess and manage pain in people with autism. In conclusion, the authors revealed the need for more research to obtain more consensual data and provided some recommendations in this domain that were under exploited by the scientific community. From a clinical point of view, more knowledge about pain in people with autism should enable the development of specific assessment tools and, consequently, better pain management in daily care

Sex-related differences in clinical characteristics of children with ASD without ID: results from the ELENA cohort

Objective: 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). Materials and methods: 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. Results: 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. Conclusion: 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 goldstandard measures of ASD, and additional clinical observations are necessary

Changes in mothers’ and fathers’ stress level, mental health and coping strategies during the 3 years following ASD diagnosis

International audienceBackground: ASD in a child affects parental mental health, with elevated levels of stress, anxiety and depression reported in parents. Method: 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: 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. Conclusions: Implications in terms of addressing the unmet mental health needs of parents and their coping strategies are discussed

How do children with autism spectrum disorders express pain? A comparison with developmentally delayed and typically developing children

International audienceThere 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

Adaptive trajectories and early risk factors in the autism spectrum: A 15-year prospective study

International audienceLittle is known about long-term outcomes. We investigate the adaptive trajectories and their risk factors in ASD. Data were obtained from 281 children prospectively followed untill adulthood. The final sample consisted of 106 individuals. Vineland scores were collected at baseline (T1), 3 (T2), 10 (T3), and 15 (T4) years later. A group-based method was used to identify homogeneous patterns of adaptive skills trajectories. Results show that among the children initially categorized as autistic, 82.6% remained over the ADOS diagnostic threshold, 11.9% converted to atypical autism, and 5.4% fell under the ADOS threshold. Most atypical autism diagnoses were unstable. Most (81.7%) autistic participants had an ID at inclusion. At T1, 59.3% were nonverbal, but only 39% at T4. Most changes occurred between 4 and 8 years of age. Approximately 25% of participants exhibited a "high" growth trajectory, in which progress continues throughout adolescence, and 75% a "low" growth trajectory, characterized by greater autistic symptoms, intellectual disability, and lower language abilities reflected by high CARS scores, low apparent DQ, and speech difficulties, which mostly, but not always, predicted low trajectories. Our findings suggest that the adaptive prognosis of autism is mostly poor in this cohort, biased toward intellectual disability. However, changes in diagnostic, speech, and adaptive status are not uncommon, even for indivduals with low measured intelligence or apparent intellectual disability, and are sometimes difficult to predict. Autism Research 2018, 11: 1455-1467. © 2018 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Most autism diagnoses given before 5 years of age are stable to adulthood, but one-fifth of individuals are no longer considered to be autistic, even in a cohort biased toward apparent intellectual disability. Conversely, atypical autism diagnoses are mostly unstable. One-third of children who are nonverbal at 5 years are verbal within 15 years, mostly before 8 years of age. Concerning adaptive behavior outcomes, only one-fourth of children exhibit a high-growth trajectory through at least 15 years

Impact of containment and mitigation measures on children and youth with SD during the COVID-19 pandemic: Report from the ELENA cohort

International audienceBackground: 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. Methods: 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. Results: 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. Conclusions: 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