Parental involvement and adjustment during the diagnostic evaluation of autism spectrum disorder at two diagnostic centers.

OBJECTIVES: The primary objective of this study was to determine the effects of permanent, mediated parental presence during all autism spectrum disorder diagnostic evaluations on parental adjustment (perceived parental stress and sense of parental competence) compared with procedures that traditionally only involve parents in pivotal periods of the diagnosis. The level of satisfaction with the diagnostic procedure and parents' needs were also evaluated to complete this first objective. The secondary objective was to assess the effects of psychosocial, individual, and contextual variables on perceived parental stress and sense of parental competence. METHODS: The total sample of 49 parents was divided (using simple randomization) into two subgroups, each for a different procedure. Participants were met with once before the first consultation and once after. They completed self-reported questionnaires on parental stress, sense of parental competence, satisfaction with the procedure, social support, locus of control, and appraisal of life events. Statistical analysis was conducted using SPAD and SPSS software. RESULTS: There was no difference between the two groups in the variables assessed. Satisfaction with the diagnostic procedure was high in both groups, but parents highlighted that they had important needs following the diagnosis. The child's level of autonomy, the presence of disruptive behaviors, and satisfaction with social support were found to be important for determining parental adjustment. CONCLUSIONS: Several hypotheses may explain the lack of differences between the two groups, including that parents may not yet have been in a position to benefit from the procedure aimed at integrating them. Our suggestion is that professional interventions should focus on improving the child's autonomy and helping the parent to develop a satisfactory support network. Finally, parents' needs for the post-diagnosis phase should be given greater consideration, particularly in future research.

A Systematic Review of Family Functioning in Families of Children on the Autism Spectrum.

This article aims to review the literature on family functioning in the field of autism. The search was conducted in August 2021 in PubMed, PsycINFO, and PubPsy and sixty-two articles were included. Studies were published in English between 1980 and 2021 and provided quantitative data from validated measures of family functioning in families with an official diagnosis of autism. Results showed that family functioning appeared more problematic for families of autistic children than non-autistic ones. Difficulties were correlated with more caregiver demand and less resources. Interventional results varied. The findings highlight the importance of considering family functioning when providing care for autistic children and their families. Limitations and implications for future research are discussed.Prospero registration number: CRD42022297696.

Development, psychometric evaluation, and factor analysis of an instrument measuring quality of life in autistic preschoolers.

INTRODUCTION: Early interventions for autistic children should target their quality of life (QoL) but require adapted measures. The association of a child's temperament and parental characteristics with the QoL of autistic children remains unknown. METHODS: We constructed an autism module based on a thematic analysis, a Delphi survey with experts, and a pre-test with parents to be completed alongside the proxy version of the PedsQL 4.0. We explored compliance, responsiveness, internal consistency, convergent validity, and factor structure with 157 parents of autistic preschool children. We examined the association between child and parental characteristics with the QoL of autistic children using correlation analysis, principal component analysis, hierarchical ascending classification, and linear regression. Sociodemographic information was collected via multiple choice questions, autism severity via Autism Diagnostic Observation Schedule (ADOS) scores, and parental acceptance and child's temperament via the Acceptance and Action Questionnaire and the Emotionality, Activity, and Sociability. RESULTS: An autism module comprised of 27 items emerged. Psychometric evaluation resulted in a 24-item autism module with good internal consistency and significant convergent validity. ADOS total score was not significantly related to QoL, contrary to children's sleep issues, children's emotionality, and parental acceptance. CONCLUSIONS: The autism module is a reliable QoL proxy measure for autistic preschool children. Results suggest parental interventions targeting children's QoL.

Evaluation of an Autism Training in a Much-Needed Context: The Case of France.

Background: Autistic people in France have called for community education to reduce autism stigma. As such, training is needed to help university students appreciate autistic peers and autistic people they may work with in their future careers. Methods: We adapted an autistic-affirming training from a training developed in other cultural contexts and evaluated it with 107 university students in France using a pretest-post-test design. Results: Questionnaire responses suggested that our brief online training helped improve attitudes toward inclusion, autism knowledge, and stigma among future educators and psychologists in France. Participants' open-ended definitions of autism revealed increased alignment with the neurodiversity movement after training. Conclusions: Findings suggest that wider-scale autistic-led adaptations of autism trainings like the one described in this report could begin to ameliorate autism stigma in France.

Why is this an important issue?: Autistic people in France have been treated very badly in the past. They have been left out of school and hurt by professionals. They still face stigma. This means they are often misunderstood, made fun of, and excluded. Some are forced to take medications they do not want. Autistic people in France have been trying to help other people in France understand autism. What was the purpose of this study?: We wanted to see whether autism training could help university students in France to better understand autistic people. We wanted to see whether our training could help students appreciate autistic people more (or lower stigma). We also wanted to see whether the training could help students understand that it is important to include autistic people in classes with other students at school. What did the researchers do?: Researchers in France, Lebanon, and the United States modified an autism training that had been used in other countries. The training was autistic affirming, which means it taught people to listen to autistic people and to see their strengths. We translated it into French. We included training topics that French collaborators thought were important. We asked university students in France who were studying education and psychology to do our training online. We also asked them to fill out surveys about autism. What were the results of the study?: After doing our training, students knew more about autism than they did before training. Some learned that autism is part of a person for their whole life. They seemed to appreciate autistic people more after training. They also agreed that it is important to include autistic people in school with other students more than they had before. What do these findings add to what was already known?: This study shows that autistic-affirming training can also help people in France appreciate autistic people. Much autism training only focuses on stigma and knowledge. Our training may also have helped future educators and clinicians understand how important it is to include autistic people in school with other students. What are potential weaknesses in the study?: The students in our study were mostly women. They were all training for jobs where they can help people. We do not know whether our training would help other French people. We also cannot be sure that our training really helped the students who did it. Students may have been dishonest about how they felt about autism. In future studies, people should see whether training changes what people do, not just what they say. How will these findings help autistic adults now or in the future?: By teaching students in France about autism, we hope to begin to help make life better for autistic people in France. We hope studies like this will help people to understand autistic people better. We also hope more people conduct trainings like that used in this study around the world to improve understanding and treatment of autistic people.

Assessing Autism Knowledge Across the Global Landscape Using the ASK-Q.

Substantial variability exists with regard to autism service provision around the world. Service disparities observed in many low- and middle-income countries may be driven, in part, by limited autism knowledge; however, measurement limitations have made it difficult to quantify autism knowledge across countries. The current study uses the autism stigma and knowledge questionnaire (ASK-Q) to quantify autism knowledge and stigma between different countries and demographics. The current study compiled data from 6830 participants collected using adapted versions of the ASK-Q administered in 13 different countries, representing four different continents. Structural equation modeling was used to examine how autism knowledge varied across country and individual factors. Results reveal cross country variability with a large, 17-point difference between the countries with the highest knowledge (Canada) and the lowest knowledge (Lebanon). As expected, countries with higher economies had higher levels of knowledge. We also documented differences based on country worldview, participant occupation, gender, age, and education level. These results help to identify specific regions and populations that might most need greater information about autism.

Psychometric validation of the French version of the PedsQLTM4.0 generic health-related quality of life questionnaire for 2-4-year-old children.

The Pediatric Quality of Life Inventory version 4.0 (PedsQLTM4.0) is an internationally recognized, generic, health-related quality of life (HRQoL) questionnaire, but its proxy 2-4-year-old version has not been validated in France. This study proposes a psychometric validation of this tool for French children aged 2 to 4 years and 11 months. A total of 220 parents of typically developing children participated. Acceptability was explored. Internal consistency was tested using Cronbach's alpha. Factor structure was tested using an exploratory structural equation modeling (ESEM). Risk of bias was assessed regarding gender and age effect on HRQoL using Student's t test. Except for school functioning, compliance was good (< 2.9%). No floor effects were observed, but ceiling effects were found for all scores. The total score had good internal consistency (Cronbach's α = .82). The Cronbach's α of each subscale was between .53 and .71. Factor analysis rejected the original 4-factor structure and revealed an alternative 2-factor structure. The total score and emotional scale score did not appear to be sensitive to gender or child age.  Conclusions: The PedsQLTM4.0 generic HRQoL questionnaire presents good psychometric properties, regarding acceptability and reliability. For use among French children aged 2 to 4 years and 11 months, we recommend retaining the total score and the emotional scale score.

Psychosocial effects of hypnosis in patients with obesity: a pilot randomized controlled trial.

The usefulness of hypnosis in patients with obesity needs to be better understood in terms of various outcomes, in addition to weight loss. The aim of this research was to investigate the effects of hypnosis and self-hypnosis in combination with nutrition education for patients with obesity, as opposed to nutrition education alone, on the secondary outcomes of quality of life (QoL), coping strategies, and self-esteem within a randomized controlled trial (RCT). Eighty-two participants were included in this study (84.3% were women), with 41 in each group. Further, 70 participants had completed treatment. The intervention consisted of eight group sessions (about one every two weeks). Participants completed self-reported questionnaires assessing their QoL, coping strategies, and self-esteem (SF-36, CISS, SEI) before and after the intervention. Non-parametric analyses were performed. Both groups had comparable characteristics at inclusion (sociodemographic information, clinical information, and scores for the self-reported scales). At eight months (i.e. two months after intervention completion), patients from the hypnosis group used more task-oriented coping (p < .001), less emotion-oriented coping (p < .01) and distraction (p < .05), and had more energy/less fatigue (p < .001) compared to the group who did not undergo hypnosis. Other improvements were observed in the hypnosis group, but there were no significant differences compared with the non-hypnosis group in terms of QoL dimensions and general self-esteem. In conclusion, hypnosis and self-hypnosis in combination with nutrition education seem to be promising interventions to help patients deal with obesity, especially by improving their coping strategies.

A systematic review of longitudinal changes in school burnout among adolescents: Trajectories, predictors, and outcomes.

INTRODUCTION: School burnout (SBO) is a public health issue with possible long-term consequences that occurs among developing adolescents. To design prevention policies, SBO's causes and consequences must be established. Moreover, a better understanding of its development might help identify key moments for interventions. Longitudinal studies can reveal whether SBO changes or remains stable over time and can track how its different dimensions develop. They can also clarify the distinction between the predictors and outcomes of SBO. METHODS: This systematic review follows PRISMA guidelines and aims to synthesize knowledge about the development of SBO and its predictors and outcomes. We queried databases for articles published between January 2002 and February 2021 that use a quantitative assessment of SBO and have longitudinal designs using students in secondary education. RESULTS: Forty-three articles representing 48 studies were included in this review. The most-documented risk factors are female gender and high school academic track. Exhaustion is the first dimension of SBO to develop. The most-documented risk factors are female gender and high school academic track. Relationships with parents serve as a protective factor. Outcomes of SBO include lower engagement at school, impaired identity development, and lower satisfaction with life. Complex relationships are found between SBO, problematic use of internet, problematic use of social media, and depressive symptoms. The three are likely to be caused by SBO but probably develop in vicious cycles. CONCLUSION: More research on the organizational factors influencing SBO in diverse educational systems is needed.

Dyadic coping and coparenting among couples after their child's recent autism diagnosis.

LAY ABSTRACT: We investigated how couples support each other after their child's autism diagnosis and whether this affects the way they work together to raise their child. We recruited 70 couples raising a child on the autism spectrum. Both partners were asked to complete the same questionnaires measuring how they perceived the experience of having a child on the autism spectrum, how they used their relationship to support each other during stressful situations, how competent they felt completing their parenting tasks, and the coparenting relationship to explore how they worked together as a team when parenting their child. Parents participated in the study 1-36 months after their child's autism diagnosis. We used statistical techniques that allowed us to see the impact mothers and fathers had on each other. Overall, parents who felt more competent and supported by their partner worked better as a team to raise their child on the spectrum. Fathers invested in the coparenting relationship more when mothers felt more supported by fathers. Mothers invested in the coparenting relationship more when fathers felt more competent parenting their child. Further research is needed to better understand how we can support couples as their child gets older.

Searching for What Really Matters: A Thematic Analysis of Quality of Life among Preschool Children on the Autism Spectrum.

Quality of life (QoL) is an essential measure when assessing health interventions. Most early interventions for preschool children on the spectrum evaluate the effects on autism symptoms. However, researchers increasingly believe that good interventions should also improve the QoL of these children. Domains of QoL among preschool children on the autism spectrum have not previously been researched. We interviewed adults on the spectrum to explore early childhood experiences that made their lives satisfying. Our data revealed four major themes: interests, environmental regularity, sensory differences and social interactions. This study provides the first insights on aspects of life important to pre-schoolers on the spectrum. Findings will contribute to developing items for a measure of QoL among this population.

Development and preliminary validation of a depressive symptomatology detection scale among children and adolescents on the autism spectrum.

LAY ABSTRACT: Many individuals on the autism spectrum experience depressive symptoms. These symptoms contribute to poor quality of life and may have a more negative impact than core autistic features. However, identifying depressive symptoms among individuals on the spectrum is a real challenge. In this study, we investigate the psychometric qualities of a French scale for evaluating depressive symptoms among youth on the autism spectrum. Participants were 153 autistic children and adolescents aged between 3 and 17 years. The majority of the sample was male (73.86%). One of their parents completed the scale for evaluating depressive symptoms among youth on the autism spectrum during an interview with a psychologist. Overall, the findings indicate the scale may be reliably used with children and adolescents on the autism spectrum. Experts deemed the items as being representative of depressive symptoms. The scale is composed of two factors: behavioral changes on one hand and cognitive and emotional changes on the other. The results are encouraging and show the scale is a promising instrument for assessing Major Depressive Disorder symptomatology among youth on the spectrum. Future studies should focus on testing this scale among adults and developing an auto-evaluative section.

Couples' Experiences of Parenting a Child After an Autism Diagnosis: A Qualitative Study.

After a child is diagnosed with autism, parents' relationships are impacted as they reorganize their daily lives to support their child's specific needs. A better understanding of parenting couples' adaptation is needed to accompany them during this period. This qualitative study explored couples' experiences after their child's autism diagnosis. An inductive thematic analysis among ten couple interviews (N = 20) revealed three key themes: emotional experiences, external support, and adaptation. Overall, the quality of couples' relationships before having a child influenced their relationship after the diagnosis. In general, parents presented complementary coparenting roles, while different opinions about how to raise the child strained their relationship. Helping parents adapt to a diagnosis together could prove to be important for future interventions and research.

Facilitators' perspectives on a psychoeducational program for parents of an autistic child.

LAY ABSTRACT: The recent increase of diagnosed cases of autism spectrum disorders has led to a considerable rise in the demands for autism-related services and interventions. Caring for an autistic child can be perceived as an enrichment, which coexists with stress in parents. Parents express the need to access relevant information about their child's difference, and parent support interventions appear to respond effectively to this demand, as they are knowledge-focused and offer indirect support to the child. The aim of this study was to capture the subjective experience of facilitators who implemented a psychoeducational program called Beyond PDD: Parental Skills within My Reach. This program is based on the acknowledged fact that parents of autistic children play a central role in their child's development. Its main goal is to help parents of autistic children under the age of 8 to identify, develop, and update their parenting competences. This program broaches different topics: (1) specific features of an autistic child, (2) post-diagnostic parental adjustment, (3) communication and social relationships, (4) importance of providing the child with a structured environment, and (5) parental emotions and perceptions that impact everyday life. Structured interviews of the facilitators provided insight on institutional support, issues related to the program itself, required and/or recommended professional background, personal experience and competences, and difficulties linked to recruitment and research criteria. Recommendations aiming to enhance program implementation and delivery were then created using facilitators' feedback on these aspects.

Evaluation of the social validity and implementation process of a psychoeducational program for parents of a child with Autism Spectrum Disorder.

The aim of this study was to assess the social validity and document the implementation of a psychoeducational program designed to support parents after their child's diagnosis, from both parents' and professionals' perspectives. A complete version (five workshops and five individual follow-ups) and a shortened version (five workshops only) of the program were evaluated. Parents filled in satisfaction questionnaires after every workshop and at the end of the program. Professionals who facilitated the program filled in a specially designed questionnaire to rate the quality of the program and of its implementation, the fidelity of implementation and the parents' responsiveness. In addition, video recordings of the workshops allowed an objective assessment of the fidelity of implementation. Attendance rates were high; parents were satisfied and felt they had made progress. Professionals evaluated positively the quality of the program and of its implementation, and felt parents were responsive. However, minor adaptations had to be made. The program has good social validity, which allowed easy and satisfying implementation, but it does require some flexibility. Overall, this study provides useful insight on the implementation process that may help clinical services to use this evidence-based program effectively.

Supporting Parents of a Child with Autism Spectrum Disorder: The French Awakening.

After being wrongfully blamed for their child's disturbances, French parents of a child with autism spectrum disorder (ASD) are now perceived as essential partners of care professionals. This shift in perspective has encouraged the development of parent training programs in the field of autism. In this paper, we present three programs currently implemented in France for parents of a child with ASD. We investigated their social validity, from the parents' perspective. All three programs showed good social validity: attendance rate was good and parents were satisfied. In France, like elsewhere, more parents should be given the opportunity to participate in such programs to help them deal with the specific challenges of raising a child with ASD.

Autism, Joint Hypermobility-Related Disorders and Pain.

Autism Spectrum Disorder (ASD) and Joint Hypermobility-Related Disorders are blanket terms for two etiologically and clinically heterogeneous groups of pathologies that usually appears in childhood. These conditions are seen by different medical fields, such as psychiatry in the case of ASD, and musculoskeletal disciplines and genetics in the case of hypermobility-related disorders. Thus, a link between them is rarely established in clinical setting, despite a scarce but growing body of research suggesting that both conditions co-occur more often than expected by chance. Hypermobility is a frequent sign of hereditary disorders of connective tissue (e.g., Ehlers-Danlos syndromes, Marfan syndrome), in which the main characteristic is the multisystem fragility that prone to proprioceptive and motor coordination dysfunction and hence to trauma and chronic pain. Considering the high probability that pain remains disregarded and untreated in people with ASD due to communication and methodological difficulties, increasing awareness about the interconnection between ASD and hypermobility-related disorders is relevant, since it may help identify those ASD patients susceptible to chronic pain.

Quality of life of French Canadian parents raising a child with autism spectrum disorder and effects of psychosocial factors.

PURPOSE: This study aimed to investigate the quality of life of parents of a child with autism spectrum disorder in Quebec. METHODS: Seventy-seven participants completed a questionnaire with socio-biographic information and five self-assessed scales, to measure perceived stress, social support and control, coping strategies, and quality of life. RESULTS: Perception of their child's autonomy level, of the severity of the disorder, of the family's income, as well as changes in their professional or familial organization influenced parents' quality of life. Perceiving their situation as a threat predicted poor quality of life, whereas satisfaction of social support predicted good quality of life. In addition, parents who used problem solving and support-seeking coping strategies had a better relationship with their child, whereas those who used more emotion-centered coping strategies struggled. Lastly, parents who felt they had the power to contribute to their child's development were more satisfied and less disturbed. CONCLUSIONS: Beyond the parents' actual situation, our results underscore the importance of paying attention to their own perception of the situation in order to provide them with appropriate support.

Quality of life, psychological characteristics, and adjustment in parents of children with Attention-Deficit/Hyperactivity Disorder.

PURPOSE: This study investigated quality of life and adjustment mechanisms in parents of children with Attention-Deficit/Hyperactivity Disorder (ADHD). METHOD: Ninety parents of children with ADHD completed a sociodemographic questionnaire and self-assessment scales to measure their perceived stress, social support, sense of control, coping strategies and quality of life. RESULTS: ADHD in children negatively affected parents' quality of life, especially their psychological well-being and personal fulfillment. Family and couple relationships, as well as daily life activities, were also affected. The severity of the disorder, perceiving the situation as a threat or a loss, feeling guilty and holding on to irrational beliefs were related to emotion-focused coping strategies and to a poorer quality of life. Furthermore, hyperactivity index and stress ratings relative to perceiving the situation as a threat or a loss, and adopting emotion-focused coping strategies, predicted poorer quality of life. In contrast, perceiving the situation as challenging was related to a greater sense of control and personal fulfillment. Moreover, perceiving the situation as challenging and adopting problem-focused coping strategies predicted better quality of life. CONCLUSION: The findings highlight the negative effects of ADHD on parent psychological adjustment and underline the need to recommend training programs that improve parenting skills, parents' perceptions concerning their child's behavior disorder and parental functioning.

Comparative Study of Teachers in Regular Schools and Teachers in Specialized Schools in France, Working with Students with an Autism Spectrum Disorder: Stress, Social Support, Coping Strategies and Burnout.

The inclusion of students with Autism Spectrum Disorder (ASD) in schools is a source of stress for teachers. Specialized teachers have, in theory, received special training. To compare the experiences of teachers dealing with students with ASD in different classroom environments. A total of 245 teachers filled out four self-report questionnaires measuring perceived stress, social support, coping strategies, and burnout. Specialized teachers perceive their teaching as a challenge, can count on receiving help from colleagues, use more problem-focused coping strategies and social support seeking behavior, and are less emotionally exhausted than teachers in regular classes. This study highlights that teachers in specialized schools and classes have better adjustment, probably due to their training, experience, and tailored classroom conditions.

Quality of life: a key variable to consider in the evaluation of adjustment in parents of children with autism spectrum disorders and in the development of relevant support and assistance programmes.

PURPOSE: Our primary objective was to identify cognitive and behavioural profiles that affect adjustment, in order to make relevant recommendations about support and assistance for parents of autistic children. METHOD: One hundred and sixty French parents completed a battery of questionnaires and self-report measures developed or adapted to assess (1) the child and family situations; (2) perceived stress; (3) perceived social support; (4) perceived control; (5) coping strategies; and (6) quality of life. RESULTS: The psychometric properties of the instruments we used proved to be adequate. Our results support the pre-existing data and our findings may prove to be of interest to clinicians. Our primary finding was that emotion-focused coping strategies seem to be less effective. Parents who employed emotion-focused strategies were more stressed and more disturbed in most parts of their life. They also experienced more guilt and reported more false beliefs about PDD. CONCLUSIONS: Our data underscore the need for psychoeducation programmes for parents, focused on handling stress and emotions, modifying false beliefs and solving the daily problems that arise from PDD. We propose a 5-axis intervention model for parents of children with PDD, based on cognitive-behavioural therapies and on a stress management programme.