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Introduction For several years, studies have been conducted on the contribution of social robots as an intervention tool for children with autism spectrum disorder (ASD). One of the early intervention models recommended by the French National Authority for Health is the Early Start Denver Model, an individualised, intensive programme based on play activities chosen by the child. While studies published in recent years suggest that robots provide benefits for autistic children in learning social interactions within a clinical setting, there is no scientific consensus on the widespread contribution and maintenance of their effects over time. On the other hand, a robotic solution controlled directly by a practitioner (ie, on-site telepresence system) enables greater adaptability to children’s responses and choices during interventions. We believe that such a solution would enable better assessment of progress in the fundamental skills of expressive communication and imitation as well as greater engagement during interventions.Methods and analysis This is a prospective, monocentric, descriptive and evaluative pilot study based on single-case experimental design (SCED) methodology. The study will recruit eight children diagnosed with ASD aged between 2 and 5 years. The intervention will take place 15 min after the usual weekly care. The SCED methodology is constructed in three stages: (A) 4 weekly sessions at baseline without the robot, (B) 9 weekly sessions with intervention modification using a social robot as cotherapist and (C) 4 weekly sessions without the robot for follow-up.Ethics and dissemination Ethical approval was obtained from the South East IV Ethics Committee (CPP Sud-Est IV) (number: 2023-A00895-40) in France. Explicit consent is required from all legal representatives (parents) of children participating in this study. We aim to disseminate the results of this study through national and international conferences, international peer-reviewed journals and social media.Trial registration number NCT05991791.

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.

Multimorbidity, defined as having two or more chronic health conditions, is associated with elevated polypharmacy and mortality. Autism spectrum disorder is a whole-body chronic health condition in which comorbidities -- in particular co-occurring intellectual disability -- contribute to high clinical heterogeneity, polypharmacy and premature mortality. We aimed to determine specific multimorbidity patterns among autism spectrum disorder + intellectual disability adults, and to identify participants' subgroups based on multimorbidity features. We used baseline examination data from a previous exploratory prospective multicentric study that included 63 autism spectrum disorder + intellectual disability adults. Multimorbidity patterns and subgroups were determined using clustering approaches. We observed 84.1% multimorbidity, significantly associated with age. We identified a dominant multimorbidity pattern, combining immune dysfunction, gastrointestinal disorders, neurological, and joint diseases. Four participants' subgroups could be distinguished by multimorbidity, autonomy and polypharmacy. Two clusters were distinguished by the prevalence and consequences of multimorbidity. One cluster involved women with endocrine disorders. The final cluster was composed of older adults with the lowest autism spectrum disorder severity but greater multimorbidity, including cardiovascular and kidney diseases. Our results support a role for the gut-brain axis in the pathophysiology of autism spectrum disorder + intellectual disability multimorbidity. Furthermore, we identified patient subgroups with specific needs, underscoring the importance of a holistic approach for autism spectrum disorder + intellectual disability adults.

Objective. This study investigated if fear of cancer recurrence (FCR) levels and the proportion of women having a clinical level of FCR differed by whether women had or had not experienced disruptions in their cancer tests and treatments due to the pandemic. Methods. We conducted a mixed-methods study between November 2020 and March 2021 among women diagnosed with breast cancer in the previous five years at the time of their entry in the study. Women completed a questionnaire online assessing disruptions in breast cancer tests and treatments due to the pandemic and the severity subscale of the Fear of Cancer Recurrence Inventory. Semi-structured interviews were also conducted with a subsample of 24 participants and were thematically analyzed. Results. The proportion of patients with a clinical level of FCR was significantly higher among those who experienced the postponement or cancellation of diagnostic and disease progression tests (e.g., blood tests, X-rays, or magnetic resonance imaging; adjusted PR = 1.27 95% CI = 1.13–1.43). Qualitative findings suggest that FCR was exacerbated by the pandemic context. In particular, perceived or actual barriers to care access due to the pandemic were identified as significant FCR-enhancing factors. Conclusions. These results highlight the need to keep diagnostic and progression tests as timely as possible to prevent increases in FCR levels and offer counselling about FCR when postponing or cancellation are inevitable.

Inclusion of students with Autism Spectrum Disorder (ASD) in mainstream schools has a positive impact on their social and daily living behaviors. Our objective was to identify clinical and socio-demographic variables promoting or limiting inclusion in mainstream school through childhood and adolescence. The EpiTED study is a long-term, prospective, multicenter cohort of 281 ASD children included before the age of 7, with a 10-year follow-up in France. Variables significantly linked to inclusion in mainstream school were identified using a mixed-effect logistic regression model: greater autonomy [OR = 1.45 (1.29-1.63)], lesser symptom severity [OR = 0.96 (0.92-0.99)] and fewer siblings [OR = 0.86 (0.75-0.99)]. In the multivariate model, the probability for a child of being included in mainstream school decreased over time [OR = 0.91 (0.85-0.97)], i.e. with age.

Autism spectrum disorder (ASD) has a significant impact on the quality of life (QoL) of families. This study aimed to examine, for parents of children with ASD, the dyadic effect of each parent's coping strategy on the perception of the impact of ASD on their QoL. In total, 164 couples completed self-report questionnaires, including the Par-DD-QoL, to evaluate the parental perception of QoL. Results from the actor-partner interdependence model showed that, in addition to the effect of the mothers' and fathers' emotion-focused coping on their own perception of QoL, the mothers' emotion-focused coping plays a key role in the fathers' perception of QoL. These findings suggest that both parents of children with ASD would benefit from couple-focused interventions. [This article was written for the ELENA study group.]

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.

Introduction With the Cognitive Orientation to daily Occupational Performance (CO-OP) approach, children with developmental coordination disorder learn to use a problem-solving strategy to deal with their motor difficulties and perform daily activities of their choice. Therapists use guided discovery to enable children to find their own solutions. Although CO-OP is recommended in a group setting, studies are needed to support its effectiveness.Methods and analysis A single-case study design with multiple baselines across participants and four systematic replications will be used. In each of the five groups, four children (aged 8–12 years) will be randomly included at the baseline. The baseline includes 5–8 measurements, and the CO-OP intervention stage is comprised of 10 sessions. The follow-up stage includes five measurements. Prior to baseline, each child in each of the five groups will choose five activities of which three will be carried out during the intervention sessions. Children’s performance in each of these activities will be scored using the Performance Quality Rating Scale (PQRS) as the main measure. Three secondary measures will be collected: perceived activity performance using the Canadian Occupational Performance Measure, quality of life using the Kidscreen-27 and spontaneous motor rhythm using a computerised typing task. Graphed data will be analysed visually at the individual level with the Visual Aid Implying an Objective Rule (VAIOR) protocol which provides a colour code based on the level and trend of two consecutive phases, facilitating an objective visual analysis. Statistics will be performed for PQRS scores at the individual level and at the group level.Ethics and dissemination The protocol has been approved by the Comité de protection des personnes Sud-Est I (CPP 2021070) and the Comité d’éthique de la recherche avec les êtres humains de l’Université du Québec à Trois-Rivières (CER-22-294-07.03). Results will be published in a peer-reviewed scientific journal.Trial registration number NCT05231486.

Abstract Autism spectrum disorder (ASD) is a neurodevelopmental disorder that results from a complex interaction between genes and environment. Breastfeeding (BF) is thought to promote healthy cognitive development, and a body of research has suggested that it may also protect against ASD. Our objectives were to identify the relationship between the initiation and duration of BF and the severity of clinical presentation in ASD. Data were collected from 243 children with a confirmed diagnosis of ASD followed in the ELENA cohort. Clinical severity was measured according to multiple dimensions using standardised tools. The frequency of the initiation of BF was comparable to that of the general population and the rate of children still being breastfed at six months of age was higher. Our results did not indicate a contribution of initiation or duration of BF to the prevention of clinical severity of ASD. We discuss our results in the light of possible methodological limitations of previous reports of an association between BF and ASD. Clinical Trial Registration: NCT02625116.

Abstract Cancer-related cognitive impairment (CRCI) is one of the most concerning conditions experienced by patients living with cancer and has a major impact on their quality of life. Available cognitive assessment tools are too time consuming for day-to-day clinical setting assessments. Importantly, although shorter, screening tools such as the Montreal Cognitive Assessment or the Mini-Mental State Evaluation have demonstrated a ceiling effect in persons with cancer, and thus fail to detect subtle cognitive changes expected in patients with CRCI. This study addresses this lack of cognitive screening tools by developing a novel tool, the Fast Cognitive Evaluation (FaCE). A population of 245 patients with 11 types of cancer at different illness and treatment time-points was enrolled for the analysis. FaCE was developed using Rasch Measurement Theory, a model that establishes the conditions for a measurement tool to be considered a rating scale. FaCE shows excellent psychometric properties. The population size was large enough to test the set of items (item-reliability-index=0.96). Person-reliability (0.65) and person-separation (1.37) indexes indicate excellent internal consistency. FaCE’s scale is accurate (reliable) with high discriminant ability between cognitive levels. Within the average testing time of five minutes, FaCE assesses the main cognitive domains affected in CRCI. FaCE is a rapid, reliable, and sensitive tool for detecting even minimal cognitive changes over time. This can contribute to early and appropriate interventions for better quality of life in patients with CRCI. In addition, FaCE could be used as a measurement tool in research exploring cognitive disorders in cancer survivors.

Children 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.

Psychotropic drugs are often used to treat behavior problems in ASD with some evidence supporting efficacity (e.g.: risperidone and irritability) but also significant side effects at the short and longer-term. It is then essential to know better the factors associated with the prescription of these medications and potentially implement early behavioral and psychosocial intervention or cognitive remediation before to use medication. We designed a case–control study based on the population of the ELENA cohort to assess the factors associated with early psychotropic drugs use in children with ASD. Externalized behavior symptoms (measured by the Child Behavior Checklist) is the leading risk factor during the first years of follow-up (aOR = 2.8; CI [1.04; 7.67]; p = 0.04). Age, gender, autism severity, adaptive behaviors, or internalized behaviors were not associated with psychotropic medication prescription. Low IQ and parents who had received training tended to increase the risk of psychotropic medication prescription during follow-up but were not statistically significant. These findings underscore the need for early identification of symptoms of externalizing behaviour, early appropriate information for parents about treatment with and without medication, early analysis of externalising behaviour and targeted treatments.

Abstract Anxiety in children with autism spectrum disorder (ASD) negatively affects their social interactions, and quality of life. It is necessary to identify early risk factors for anxiety to tailor prevention and interventions. We aimed to examine the clinical level of anxiety in children with ASD from 5 to 10 years of age and identify potential early risk factors 3 years earlier. Participants were ASD children included in ELENA, a French prospective cohort. In this study, we used the collection of data at Time 1-T1 (at baseline) and Time 2-T2 (3 years after T1). Two groups were identified at T2 according to the threshold for anxiety on the CBCL: ASD-only group and ASD + anxiety group. Our results showed that half of the children in our sample had a clinical level of anxiety at T2. Regression analysis showed that greater ASD severity and lower sensory processing difficulties predicted lower anxiety, whereas higher levels of restricted and repetitive behaviours tended to predict higher levels of anxiety. The high prevalence of clinical-level anxiety in our sample suggests the need for specific assessment and targeted treatment of anxiety on a routine basis.

The early recognition of ASD in adults is challenging, in particular due to the lack of appropriate and robust diagnostic tools. We performed a psychometric validation and diagnostic accuracy study of the French version of the RAADS-R on a sample of 305 adults: 105 with ASD without ID, 99 with psychiatric disorders, and 103 non-psychiatric control groups. The French version of the RAADS-R demonstrates good reliability and diagnostic validity, suggesting that it can help clinicians during the diagnostic process in adults with ASD without ID. However, the finding that a two-factor structure better fits the results requires further validation. This study point out the need of further study of RAADS in psychiatric disorders group due to the relatively high false positive rate (55.6%) of ASD.

Autism spectrum disorder (ASD) is a lifelong neurodevelopmental condition and understanding the changes in autism symptoms over time is crucial for tailoring support and interventions. This study therefore aimed to investigate the changes in symptom severity in a large cohort of children with ASD over a three‐year follow‐up period and identify factors that influence these changes. The study included 575 children diagnosed with ASD, ranging in age from 2 to 12 years, who were assessed at baseline and again 3 years later using the Autism Diagnostic Observational Schedule‐2 (ADOS‐2). ASD severity changes were investigated using the ADOS calibrated severity score (CSS) scores for total, social affect (SA) and restricted and repetitive behaviors (RRB). Results highlight four distinct patterns: stable high, stable low, increased, and decreased severity. The ADOS CSS total score changed for half of the sample, reflecting an increase in ASD severity for 21.9% and a decrease for 29.1% of children. For the other half, the ADOS CSS score remained stable, either high (34.4%) or low (14.6%). While the majority of previous studies reported stability in ASD severity, our findings revealed significant variability with frequent improvements in SA symptoms whereas RRBs remained stable or worsened. Our findings also showed that an improvement in SA was associated with the youngest group and early diagnosis. However, no clinical or sociodemographic factors were linked to changes in RRB, emphasizing the necessity for RRB‐specific therapies. The third six‐year follow‐up point of the ongoing ELENA cohort study will map the long‐term trajectories of the severity of ASD symptoms and their potential risk factors. Lay Summary: ASD severity changes were assessed at baseline and 3 years later in 575 children aged 2–12 diagnosed with ASD using the ADOS‐2 scale. Four distinct patterns were identified: stable high, stable low, increased, and decreased severity. Early diagnosis was related to improved social affect although predicting repetitive behaviors was challenging and showed no correlation with clinical or sociodemographic characteristics. [ABSTRACT FROM AUTHOR]

Atypical sensory processing is common in autism spectrum disorders (ASD), but their role in adaptive difficulties and problem behaviors is poorly understood. Our aim was to determine the prevalence and type of atypical sensory processing in children with ASD and investigate its impact on their adaptive functioning and maladaptive behaviors. We studied a subsample of 197 children rigorously diagnosed with ASD from the ELENA cohort. Children were divided into atypical and typical sensory processing groups and several independent variables were compared, including adaptive functioning and maladaptive behaviors. Overall, 86.8% of the children had at least one atypical sensory pattern and all sensory modalities were disturbed. Atypical sensory processing explained a significant part of the variance of behavioral problems.

Introduction The elevated rates of neurodevelopmental disorders (NDDs) among siblings of children with autism spectrum disorder (ASD) raise concerns about their developmental monitoring and development. The main aim of this study is to assess the feasibility and acceptability of a standardised screening process on a large sample of siblings.Methods and analysis This prospective study will assess the feasibility of a selective and multi-stage screening process for NDD performed on 384 siblings of children with confirmed ASD. Stage 1 will consist of the screening of NDD performed using online parental questionnaires (Social Responsiveness Scale, IdentiDys scale, DCDQ, parental concerns) through a web platform. In cases of a positive result, the second stage, consisting of a clinical semi-structured interview with a psychologist, will be proposed to the sibling before referral for diagnosis and treatment, if necessary. Approximately 12 months after stage 2, parents will be contacted by telephone to collect the diagnosis established following the referrals and their level of satisfaction concerning the screening process. Based on an expected participation rate of 50%, to estimate this rate with an accuracy of 5%, it is necessary to screen 384 subjects.Ethics and dissemination The Ethics Committee on the Research of Human Subjects of Paris (Ile de France VII) approved this study in March 2022 (number: 2021-A02241-40). Express consent is required from all participants. Findings from the cohort study will be disseminated by publication of peer-reviewed manuscripts, presentations at scientific meetings and conferences with associated teams.Trial registration number NCT05512637.

BackgroundThe COVID-19 pandemic may affect the screen time of children and adolescents with Autism Spectrum Disorders (ASD). This study aimed to examine the screen time of children and adolescents with ASD during a discrete lockdown period in France and identify risk factors for excessive screen time.MethodsThe study sample consisted of 249 ASD subjects, 3–17 years of age, enrolled in the ELENA cohort. Information about the screen time was collected using the COVID-19 questionnaire specially created for this study. The clinical, socio-demographic and familial characteristics were collected from the last ELENA follow-up visit.ResultsMore than one third of subjects exceeded recommended levels of screen time and almost half of parents reported that their child spent more time using screen since COVID-19 pandemic beginning. Excessive screen time was significantly related to age with higher screen time in adolescents. Risk factors for excessive screen time were high withdrawn behaviors and low socioeconomic status for children, and older age and male gender for adolescents.ConclusionThese results imply to adapt the recommendations already formulated in general population concerning the good use of screens in youth with ASD. Specific recommendations and suitable guidance are needed to help children and adolescents with ASD and their parents implement the more optimal use of screen time activities for educational, therapeutic and social goals.Trial registration numberNCT02625116.