Cécile Rattaz

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

Summary 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. Abstract 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.

Impact of autism in adolescents on parental quality of life

PurposeTo 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).MethodsOne 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).ResultsA 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.ConclusionsThose 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.

Autisme et Douleur – Analyse Bibliographique

The 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.

Symptom severity as a risk factor for self-injurious behaviours in adolescents with autism spectrum disorders

BACKGROUND Self-injurious behaviours (SIB) are highly prevalent in individuals with autism spectrum disorders (ASD) and have deleterious effects on the individual and their environment. The aim of this study was to examine SIB prevalence and associated features in a population of 152 adolescents with ASD and to determine risk factors for SIB. METHODS The present study uses a subset of data of a longitudinal follow-up of 152 children with ASD. The presence of a low or high level of self-injury was assessed at adolescence through the Aberrant Behaviour Checklist completed by parents. Clinical and social variables regarding severity of autism symptoms, psychological development, adaptive behaviours, parental quality of life and total intervention time were collected during childhood (mean age = 5 years, SD = 1.6) and at adolescence (mean age = 15 years, SD = 1.3). RESULTS About 35.8% of adolescents with ASD in our sample displayed self-injury, which was frequently associated with other challenging behaviours and was related to severity of autism symptoms, adaptive skills, intellectual functioning and language level (P < 0.001). The main risk factor for SIB at adolescence was severity of autism symptoms (P = 0.04). Cognitive development during childhood was found to be a protective factor (P = 0.03) whereas at adolescence, the main protective factor was communicative abilities (P = 0.04). CONCLUSIONS These data showed that SIB remained highly prevalent at adolescence and yielded risk and protective factors for developing SIB at this period of life. Limitations and perspectives for future research are discussed.

Special education and care services for children, adolescents, and adults with autism spectrum disorders in France: Families’ opinion and satisfaction:

This study focused on parents’ satisfaction with the special education and care services proposed to their child with autism spectrum disorders (ASD). Data were collected in three regions of France, using a questionnaire designed for the purpose of this study. Among the 530 families contacted, 212 filled in the questionnaire (response rate = 40.8%). Results showed that parents were globally satisfied with providers’ involvement and motivation, but they felt they were not involved enough in their child’s individualized program, that communication with providers was insufficient and that the services lacked ASD’s specific tools and interventions. Among all families interviewed, parents of adolescents were the most unsatisfied and we hypothesized that this could be due to the specific issues regarding developmental changes and concern about the future at this period of life. Congruently with the literature, variables related to parental overall satisfaction were a regular communication with professionals, a specific, regularly updated individual program in which parents are associated, and specialized tools and interventions. The implications of these findings are discussed as well as future directions for clinicians to improve service delivery and allow the persons with ASD and their families to be more involved in the services.

Challenging behaviours at early adulthood in autism spectrum disorders: topography, risk factors and evolution: Challenging behaviors at early adulthood in ASD

BACKGROUND Challenging behaviours are highly prevalent in children and adolescents with autism spectrum disorders (ASD), but little is known about the prevalence and course of these behaviours during adulthood. The aims of this study were to describe the topography of challenging behaviours in a cohort of 106 young adults with ASD and to identify the risk factors for challenging behaviours. Our secondary objective was to study the changes in challenging behaviours from adolescence to early adult years. METHOD The present study uses data from the EpiTED prospective follow-up study in France. The presence of challenging behaviours was assessed by the Aberrant Behaviour Checklist (ABC) completed by parent informants. Several dimensions of behaviour were studied: irritability, stereotypy, lethargy, hyperactivity and self-injury. Clinical variables were collected on ASD symptom severity, cognitive and language levels, adaptive behaviours and comorbid medical disorders. RESULTS The presence of challenging behaviours at early adulthood was related to the young adults cognitive and language level, ASD symptom severity and comorbid gastrointestinal and sleep disorders. The main risk factor for challenging behaviours was ASD symptom severity. The level of language impairment was a significant predictor of self-injury. Gastrointestinal disorders were a significant predictor of stereotypy. The change in behaviour topography from adolescence to early adult years corresponded with decreased parent report of hyperactivity, but no significant decrease in parent reports of irritability, stereotypy, lethargy and self-injurious behaviours. CONCLUSIONS The challenging behaviours in individuals with ASD persist in early adulthood and are related to core symptom severity, levels of cognitive and language impairments and medical comorbidity. The results emphasise the importance of early interventions for children with ASD to target cognitive and language abilities and to alleviate the severity of ASD symptoms. They also underscore the need to enhance opportunities for individuals with ASD to better communicate discomforts and pain in the context of medical illness.

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

Little 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.

Quality of Life in Parents of Young Adults with ASD: EpiTED Cohort.

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.