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Autism Spectrum Disorder is neurodevelopmental disorder, the manifestations of which and levels of support individuals may require vary greatly. Although there is a plethora of information regarding supporting autistic individuals in higher education and the workplace, there is a paucity of information regarding both autistic nurses and nursing students. This paper presents an overview of autism spectrum disorder, the particular features of which are relevant in nursing professions and in the context of higher education; and highlights issues surrounding disclosure and implementing reasonable accommodations. It concludes with a reflection of the author's experience as an autistic nursing student., Competing Interests: Declaration of competing interest None., (Copyright © 2024 Elsevier Ltd. All rights reserved.)

Caregivers of children with attention deficit-hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) experience more stress than caregivers of typically developing children but there is limited research evaluating caregivers' quality of life (QoL). This study aimed to describe the association of caregiver QoL in children with ASD and/or ADHD. This study included patients with ADHD and/or ASD seen in one pediatric specialty clinic between September 2018-August 2020. Caregivers were classified as those caring for children with ASD-only, ADHD-only, or youth with both conditions (ADHD + ASD). An adapted version of the PedsQL Family Impact Module was used to measure caregiver QoL. The sample included caregivers of 931 children. The majority of these children were male (74.7%), non-Hispanic white (63.3%), and aged 6 to 12 years (57.8%). Across the groups, significant differences were observed in patient age (p < 0.0001), preferred language (p = 0.005), and insurance (p = 0.001). Caregivers of non-Hispanic Black children had 4-times the odds of reporting feeling isolated from others (OR 4.36, 95% CI 1.19-16.00 p = 0.03). Those caring for children with ADHD-only had significantly lower odds of reporting helplessness or hopelessness (OR 0.45, 95% CI 0.26-0.80, p = 0.004), and difficulty talking about their child's health with others (OR 0.30, 95% CI 0.17-0.54, p < 0.0001). Similarly, caregivers of children who had ADHD + ASD reported higher odds of difficulty making decisions together as a family (OR 14.18, 95% CI 1.15-17.91, p=0.04) and difficulty solving family problems together (OR 45.12, 95% CI 2.70-752.87), p = 0.008). Caring for children with ADHD and/or ASD may affect caregiver QoL., (© 2023. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Background:  Caring for a child with autism spectrum disorder (ASD) is a challenging and stressful task, especially in countries with limited resources. Additional research is necessary, considering the increasing prevalence of children with ASD, to gain increased knowledge of the complex difficulties faced by caregivers of ASD children and to offer insights into the coping strategies and support networks that parents utilise., Objectives:  The objective of this study was to explore and describe the experiences and coping mechanisms of caregivers of children with ASD in Dr Kenneth Kaunda district, North West province, South Africa., Method:  Qualitative explorative, contextual and descriptive design with purposive sampling technique and semi-structured interviews were conducted. Data were analysed following the six steps of reflexive thematic analysis., Results:  Two themes were identified: Caregivers' experiences in raising a child with autism, and caregivers' coping in raising a child with autism., Conclusion:  The research established caregivers' experiences and coping mechanisms in raising a child with ASD and the effects on different aspects of their lives including emotional, social and financial aspects, which contribute negatively to their holistic well-being. These impediments warrant the establishment of emotional support groups, empowerment of caregivers and awareness-raising through campaigns to educate the family and the community on the diverse challenges.Contribution: The findings of this study contribute to a deeper understanding of the multifaceted challenges faced by caregivers of children with ASD and provide insights into the support systems and coping mechanisms employed by these caregivers within the socio-ecological context.

Objective: The purpose of this study was to investigate the relationship between sleep quality and quality of life (QOL), or overall level of well-being, in caregivers of children with autism spectrum disorder (ASD) on the daily level., Method: This study utilizes mobile ecological momentary assessment (mEMA) to capture daily experiences of caregivers of children with ASD over a period of 14 days. Utilizing mEMA, this study examines relations between sleep quality and QOL and the role of mood and physical health as mediators on the daily level, specifically for caregivers of children with ASD (n = 51). The data were analyzed using multilevel modeling by MLMed macro., Results: The results suggest that there is a significant positive relation between sleep quality and QOL across individuals. Surprisingly, there was a negative relation between sleep quality and QOL within individuals. The positive relationship between sleep quality and QOL across participants was explained through positive mood across individuals. Furthermore, this relationship also occurred through better physical health across and within individuals., Conclusion: For caregivers of children with ASD, daily positive mood and better physical health explain the relationship between daily sleep quality and QOL. Understanding daily experiences of caregivers of children with ASD may inform interventions and practices aimed at improving sleep and its associated outcomes to ultimately improve caregiver well-being., Competing Interests: The authors declare no conflict of interest., (Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.)

Background: Although there is a body of literature on the implementation of interventions to manage procedural pain and anxiety in youth with autism spectrum disorders (ASD), we found no literature presenting the current state of knowledge on this topic., Objectives: To review the state of knowledge on interventions for the management of procedural pain and anxiety in children and adolescents with ASD., Method: A scoping review using PRISMA-ScR was conducted., Data Sources: PubMed, MEDLINE, all EBM reviews, Embase, APA PsychInfo, EBSCO CINAHL, and ProQuest Dissertations and Theses Global databases were searched. Gray literature was also searched., Analysis Method: Braun and Clarke's (2006) model for thematic analysis in psychology was used to synthesize the search results., Results: Thirty articles were selected. Analysis of the extracted data revealed four elements of intervention for better management of procedural pain and anxiety in the study population: 1) characteristics of the procedure and the immediate environment; 2) parent-child interactions; 3) health care provider-child interactions; and 4) direct pharmacological and nonpharmacological interventions., Implications for Nursing Practice: Nurses must be able to implement appropriate interventions for the management of procedural pain and anxiety in youth with an autism spectrum disorder., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024. Published by Elsevier Inc.)

Background: Autism Spectrum Disorder (ASD) is a condition commonly characterized by challenges with social interaction, repetitive atypical behaviour, and restricted interest. It is estimated that about 1 in 160 children has ASD. Caring for children with ASD is challenging for many parents or caregivers., Objectives: The study aims at exploring the challenges experienced by caregivers of children with ASD., Methods: A qualitative phenomenological study was employed using an exploratory descriptive research design. A total of 10 participants were recruited in this study using a purposive sampling technique. Data were analysed using content analysis procedures., Result: Caregivers of children with ASD face social, financial, and emotional challenges, challenges in accessing health care, education and training of their children in mainstream school settings., Conclusion: The numerous challenges have implications for the quality of life of the caregivers and their children. The financial challenges and inaccessibility of specialist health services have serious implications for the continuous medical care and monitoring of children with ASD. The challenges in education and training of children with ASD has negative consequences for enrolment and retention of children with ASD in mainstream school settings., Competing Interests: Declaration of competing interest All authors certify that they have no affiliations with or involvement in any organization or entity with any financial interest or nonfinancial interest in the subject matter or materials discussed in this manuscript., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Purpose: This study aims to investigate the current status of affiliate stigma among parents of autistic children, analyze the influencing factors, explore the relationship among mindfulness, coping styles, and affiliate stigma, and verify the mediating role of coping styles between mindfulness and affiliate stigma in parents of children with autism in China., Method: Between February and April 2023, the Child Development Behaviour Centre of a public hospital in China recruited 345 parents of children with autism. These parents completed the general information questionnaire, the Mindful Attention Awareness Scale, the Affiliate Stigma Scale, and the Simple Coping Style Questionnaire. We then adapted the Hayes Process Macro and Bootstrap methods to examine the mediating effects of coping styles between mindfulness and affiliate stigma., Results: (1) The total affiliate stigma score of parents of children with autism was 48.53 (standard deviation:: 10.74). Parents' age, monthly family income, duration of care, mindfulness, and coping styles were the influencing factors of parental affiliate stigma. (2) Mindfulness was positively correlated with positive coping style (r = 0.33, p < .01) and negatively correlated with negative coping style, affiliate stigma (r = -0.38, -0.39, p < .01), whereas affiliate stigma was negatively correlated with positive coping style (r = -0.34, p < .01) and positively correlated with negative coping style (r = 0.41, p < .01). (3) Positive coping style and negative coping style play a parallel mediating role between mindfulness and affiliate stigma of parents of autistic children., Conclusions: Parents of children with autism experience significant levels of affiliate stigma. Mindfulness has a direct impact on associated stigma in parents of children with autism and also indirectly predicts associated stigma through the intermediary influence of positive and negative coping styles. Healthcare professionals could perform mindfulness interventions from an optimistic psychology viewpoint to boost parents' mindfulness and coping abilities, thereby accomplishing the objective of mitigating affiliate stigma., Competing Interests: Conflict of interest The authors have no conflicts of interest relevant to this article to disclose., (Copyright © 2024. Published by Elsevier B.V.)

The current COVID-19 pandemic is presenting challenges for families (Cluver et al., The Lancet, 2020), which may be exacerbated for caregivers of children with developmental disabilities (DDs; Center on the Developing Child, Stress, hope, and the role of science: Responding to the coronavirus pandemic, 2020). The purpose of this study was to explore caregiver burden and psychological distress among caregivers of children with DD as compared to caregivers of typically developing children across the United States as a result of COVID-19. Between 2 weeks and 1 month following COVID-19-related school closures, a total of 460 caregivers from across the U.S. completed an online survey via Qualtrics; recruitment and initial survey completion occurred simultaneously. Of the total sample of eligible participants (N = 407), 225 were the primary caregiver of a child with autism spectrum disorder (ASD)/attention-deficit/hyperactivity disorder (ADHD) and 182 were the primary caregiver of a child without ASD/ADHD. Participants across groups indicated varying levels of exposure to COVID-19 and an impact of COVID-19 at the community and individual or family levels. However, caregivers of children with ASD/ADHD reported significantly higher levels of burden, depression, anxiety, and stress. Overall, findings are consistent with anecdotal and preliminary reports that all caregivers are experiencing COVID-19-related challenges, with caregivers of children with ASD/ADHD experiencing even greater challenges, particularly with regard to burden and psychological distress. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Editor's note: From its first issue in 1900 through to the present day, AJN has unparalleled archives detailing nurses' work and lives over more than a century. These articles not only chronicle nursing's growth as a profession within the context of the events of the day, but they also reveal prevailing societal attitudes about women, health care, and human rights. Today's nursing school curricula rarely include nursing's history, but it's a history worth knowing. To this end, From the AJN Archives highlights articles selected to fit today's topics and times.For many years, autism was thought to be a type of childhood schizophrenia. In AJN's May 1958 issue, an article entitled "Childhood Schizophrenia" describes the inpatient treatment of children with autism. Some parts of it are difficult to read, not because the actual treatment was painful or torturous, but because experts decided that children needed to be away from their parents in order for treatment to be successful. The authors of this article, a pediatric psychiatrist and a psychiatric nurse educator, write, "Because the mother's role is so significant in the child's development . . . in almost every instance, the schizophrenic [autistic] child must be removed from its 'sick' mother in order that adequate remedial measures may be instituted." To read the full article, go to http://links.lww.com/AJN/A175.Today, autism spectrum disorder (ASD) is recognized as a neurodevelopmental condition that probably begins during the prenatal to early postnatal period. In this issue, authors Deborah Christensen and Jennifer Zubler provide an update on ASD risk factors, epidemiology, diagnosis, and treatment in "From the CDC: Understanding Autism Spectrum Disorder."

Hospitalization of children with autism spectrum disorders (ASDs) is a challenge for paediatric nurses. The literature reveals a lack of knowledge among the clinical and behavioural characteristics of autism. The aim of the study is to investigate the knowledge of paediatric nurses about ASDs and their experience with children with ASD. Ninety-three nurses completed Knowledge About Childhood Autism Among Healthcare Workers questionnaire, a sociodemographic questionnaire and an open-ended questionnaire to evaluate the experience of nurses. Findings showed that nurses have a basic knowledge of ASD, except for comorbidity and onset of the ASD, in which they obtained lower scores. Older nurses and those who had more experience in a paediatric ward or with children with ASD showed higher scores. Analysis of the content of open-ended questionnaire showed that nurses have difficulties in managing the relationship with children with ASD, and that they wonder about how to improve it, seeking useful strategies for this purpose. During interactions, nurses experience mixed feelings such as sadness, suffering, uneasiness, inadequacy, displeasure, embarrassment and tenderness. They declare the need for more knowledge about ASD. They would like to improve their own capacity for interactions with these children, also through training.

Objective: Parents of children with special needs such as learning and attentional disabilities (LADs) and autism spectrum disorder (ASD) are at high risk for stress-related disorders. The demands of parenting may compete with time for self-care behaviors such as physical activity, healthy eating, and adequate sleep. The objective was to describe health behaviors among this understudied population and assess the changes after a resilience intervention., Methods: This was a secondary data analysis of a randomized controlled pilot virtual mind-body resilience intervention (Stress Management and Resiliency Training: A Relaxation Response Resiliency Program) trial for parents of children with LADs (n = 52) and ASD (n = 47). Parents completed self-report questionnaires about their weekly physical activity, eating behaviors, sleep duration, and fatigue before and after the 8-week intervention. Descriptive statistics and pre-post intervention effect sizes (Cohen's d) were calculated., Results: Both parent groups reported suboptimal levels of health behaviors at baseline, but ASD parents reported lower health behaviors than LAD parents. LAD parents improved more on physical activity, with a higher percentage meeting recommendations at postintervention follow-up (d = 0.71) than ASD parents (d = 0.01). Eating behaviors showed small effect size improvements for both groups. Although sleep duration improved only with small or medium effect sizes for both groups, ASD parents rated their fatigue lower after the intervention (d = 0.81)., Conclusion: Parents of children with special needs who participated in a virtual resilience intervention demonstrated suboptimal health behaviors. There is a need for targeted interventions for health behaviors that can promote resilience in these high-stress populations.

Children diagnosed with autism spectrum disorder (ASD) are reaching adulthood and require some form of lifelong care. Many parents continue caring for their adult children with ASD for as long as physically possible. As parents age, many also may provide care for another loved one, such a spouse or parent. This study compares compound (those providing care for multiple loved ones) and noncompound parental caregivers (those providing care solely for an adult child with ASD) on six dimensions of quality of life (enjoys life, life is meaningful, ability to concentrate, accepts bodily appearance, satisfied with self, and frequency of negative feelings). Specifically, this study determined the extent to which compound and noncompound caregivers' quality of life differed. The present study included 320 parents (age 50 or older) of adult children (18 or older) diagnosed with ASD who completed a web-based survey. T-tests for independent samples compared the six dimensions and overall quality of life between compound and noncompound caregivers. Results indicated that compound caregivers were less able to concentrate and had fewer negative feelings than noncompound caregivers. Further research is needed to determine the effects of caregiving on the multidimensional aspects of quality of life.

Through a presented case scenario, this article describes the assessment and management of behaviors associated with autism spectrum disorder (ASD) in the pediatric population, with mnemonics as a memory tool. Although students present mainly to the school nurses' office with physical complaints, there are many mental health concerns in the school-age population with emotional and physical consequences, particularly among students with ASD. Typically considered a developmental disorder, ASD affects communication and behavior with a wide range of symptoms that can vary in severity from person to person. It is important to understand the presentation and management of common pediatric mental health issues at school to be on the front line of your students' health.

Background: Children with intellectual disability (ID) frequently have significant educational, social and health care needs, resulting in caregivers often experiencing a wide range of negative effects. This paper aims to determine the impact of childhood ID on caregivers' health-related quality of life (HRQoL) across co-morbid diagnostic groups. The second aim of this study is to determine the risk factors associated with lower HRQoL in this population., Methods: Caregivers of a child with ID aged between 2 and 12 years old completed an online survey to determine their HRQoL using the EQ-5D-5L measure. They were also asked demographic questions and about their dependent child's level of behavioural and emotional difficulties., Results: Of the total sample of 634 caregivers, 604 caregivers completed all five questions of the EQ-5D-5L. The mean age of caregivers was 39.1 years and 91% were women. Caregivers spent on average 66.6 h per week caring for their child related to their child's disability. The mean EQ-5D-5L score of caregivers was 0.80 (95% confidence interval: 0.79, 0.82), which is below the estimated Australian population norms (mean utility score of 0.92) for the age-equivalent population. Caregivers of children with autism spectrum disorders reported the lowest HRQoL (0.77, 95% confidence interval: 0.74, 0.79) of the five included co-morbid diagnostic groups. Caregivers with a lower income, a perceived low level of social support and children with higher degree of behavioural and emotional problems were likely to have a statistically lower HRQoL., Conclusions: This is the first study to produce utility values for caregivers of children with ID. The utility values can be used to compare health states and can be used to inform comparative cost-effectiveness analyses. Demonstrating that caregivers of children with ID have reduced HRQoL and that this is associated with the degree of behavioural and emotional problems has important policy implications, highlighting the potential for policy interventions that target behavioural and emotional problems to improve outcomes for caregivers., (© 2019 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Evidence suggests that improved health outcomes and reducing the hospital length of stay of individuals with autism require working in partnership between parents and health care professionals. Parents' ability to cope in their daily caregiving responsibilities to their child with autism and assessment of their hospital experience can have an impact on their participation with the care team. Nurses working in the inpatient setting can provide support to parents during their encounter with them. This article presented some of the helpful approaches that can help in building positive relationships with parents that may help facilitate addressing the needs of their child with autism. Suggestions that nurses can implement to support the parents cope with their daily challenges are presented. The approaches were discussed in relation to literature and suggestions from parents of individuals with autism spectrum disorder.

The condition presently known as autism spectrum disorder was first described in the literature nearly 80 years ago. Since then, the research community has mounted a quest to discover the etiology of the condition in hopes of discovering prevention, treatment, and cures for this developmental disorder. The field of autism genetics has made progress in understanding what genes are and what are not associated with autism. This article provides a brief overview of the evolution of autism genetics and describes the current state of science in realizing genetically informed prevention and treatments.

Background: People with learning disability (LD) have complex comorbidities that develop at an earlier age than the general population and with which they are now living longer. Identification, assessment and management of these conditions is important but challenging., Aim: To develop resources with care staff to enable them to recognise and manage changes and decline in the health of a person with a LD., Methods: Two resources (PIP-LD and CIRC) were developed through undertaking a literature review; networking with experts; and collaborating with staff in the care homes for people with a LD. Care staff then used these resourcesto review their residents., Findings: The PIP-LD and CIRC were used in 39 care homes. The PIP-LD empowered staff to meet people's immediate health needs, and the CIRC helped them to recognise changes or a decline., Conclusions: The combined use of the PIP-LD and the CIRC enabled care staff to recognise the signs and symptoms of each person's comorbidities early, and to identify and manage changes when their health declined.

The present study investigated family quality of life (FQOL) as experienced by 493 mothers and fathers (295 families) of young children with autism spectrum disorder (ASD) prior to receiving early intervention services in the province of Québec. These families were most satisfied with their physical and material well-being and least satisfied with their family interactions. Children's level of functioning across various standardized and subjective measures were positively associated with parents' FQOL. In both parents, family characteristics associated with financial and personal resources were also linked to FQOL. The child's age and the number of children were associated with mothers' FQOL. Overall, these findings provide a portrait of ASD-related stressors and resources relevant to both parents during the early childhood period.

Aim: To explore the prevalence and correlates of depressive symptoms among parents/primary care providers of children with autism spectrum disorder (ASD)., Design and Methods: A cross-sectional analytical study was conducted among a systematic random sample of parents/caregivers of children with diagnosis of ASD in Muscat, Oman. Depressive symptoms were quantified using the Patient Health Questionnaire-9., Findings: The response rate was at 86% (n = 80) and the prevalence of depressive symptoms, at 71.3% (95% confidence interval, 60.5-80.1). Logistic regression analyses indicated that unemployment and being the sole parent/caregiver in the family were both significant correlates of depressive symptoms., Practice Implications: With an increase in the number of children being diagnosed with ASD, multidimensional preventive and remedial service programs for parents/caregivers will be essential., (© 2019 Wiley Periodicals, Inc.)

Background: Affiliate stigma negatively predicts social support, and positively predicts psychological distress, in caregivers of children with ASD. Whether the affiliate stigma-distress relationship occurs indirectly via social support however has not been explored., Methods: A correlational design was used. A sample of n = 124 caregivers of children with ASD completed an online survey assessing affiliate stigma, perceived support from family, friends and significant others, and perceived stress., Results: The relationship between greater affiliate stigma and increased perceived stress occurred indirectly via lower perceived support from family, but not from friends or significant others., Conclusions: These findings underscore the importance of increasing caregivers' perceived family support. Whether interventions that alleviate affiliate stigma are beneficial for reducing perceived stress, and whether this effect is mediated by increased perceived availability of support, might be the subject of future research., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Case: Kevin is a 12-year-old boy with autism spectrum disorder, intellectual disability (nonverbal IQ scores in mid-40s), and attention-deficit/hyperactivity disorder who has been followed up by a developmental-behavioral pediatrician (DBP) and a child psychologist for medication and behavioral management since he was 4 years old. Kevin was placed in the care of his great-great-aunt shortly after he turned 2 years of age because of concerns of neglect. She is now his legal guardian.Kevin is predominately nonverbal but does use a few single words to make requests or label items. He attends a public school and receives full-time special education support. He has a personal care assistant (PCA) who provides in-home support 5 to 6 days/wk for 3 to 4 hours at a time. The PCA is working on toilet training, using a "clock-training" approach, and also takes Kevin outdoors to play or on short outings during her visits. In his free time, Kevin prefers to watch cooking shows on television.Over the past year, Kevin's behaviors have become more concerning. There have been several episodes of Kevin waking up during the early morning hours and going to the kitchen to "cook." After one of these episodes, his guardian was not aware that Kevin had woken up until the next morning when she found a concoction of corn starch, coffee grounds, cottage cheese, and powdered drink mix in the blender. Kevin had also woken up during the night and ventured out of the house into the back yard. His guardian had woken up immediately as the alarm system sounded when he opened the outer door from the house to the yard.A door alarm was added to Kevin's bedroom door so that his guardian would be alerted when he leaves his bedroom; however, the alarm is not used consistently because there are times when the alarm cannot be found at bedtime. Kevin's guardian was able to obtain a GPS device for him to wear on his shoe from the local police department. He wears this without resistance every day.Kevin's guardian is in her mid-70s, and she has had several health issues over the past 2 to 3 years. There are no other family members who are willing or able to care for Kevin if his guardian were no longer able to. The DBP and child psychologist have encouraged Kevin's guardian to explore long-term residential care options with the state agency that provides support for individuals with intellectual disabilities and with Kevin's insurance provider, but the guardian is very reluctant to do this. She fears that Kevin will be removed from her care or placed in a "home" where someone will "do bad things to him."What else would you recommend or actions would you take to support Kevin's guardian in ensuring Kevin's safety and planning for his future care?

Background: Although parental stress is higher for children with neurodevelopmental disorders (NDs), it is unclear how this stress compares to more common NDs. The current study compared stress in parents of children with Williams syndrome (WS), Down syndrome (DS) and autism spectrum disorders (ASD). The impact of individual and contextual factors was also explored., Method: Parents of children with WS (n = 107), DS (n = 79) and ASD (n = 79) completed a background questionnaire, a parental stress questionnaire and a satisfaction with life questionnaire., Results: Although all groups displayed similar levels of parental stress, the factors that influenced this stress differed between the groups. There were also differences for life satisfaction and relationships between parental stress and individual and contextual factors., Conclusions: Although parents of children with NDs are not at an increased risk of parental stress, the results suggest that interventions should be syndrome-specific., (© 2019 John Wiley & Sons Ltd.)

Background: Raising a child with autism spectrum disorder is associated with high levels of stress. Primary caregivers are a group at risk of mental illness and reduced quality of life. Although interventions for the child with autism spectrum disorder exist, there are few or no interventions focusing on the physical, emotional and psychological needs of the primary caregivers. Objectives: The aim of this scoping review paper was to identify and describe quality of life interventions offered to primary caregivers of children with autism spectrum disorder. The content, structure, and mechanism of delivery of these interventions, including their contribution to improving the quality of life of these caregivers, are discussed. Method: A scoping review protocol and methodology was developed and implemented according to a five-step process; namely, identification of the research question including the PICo, identification of suitable studies using selected search strings, selection of studies using PRISMA guidelines, charting of the results, and collation and summarising of the information. Reviewers where active at various stages to maintain the rigour of the study. Twenty one studies were reviewed and eligible for analysis. Results: The content and trends in structure and mechanism of delivery are described. Three themes emanated from the interventions' content. The studies were analysed according to quality of life domains addressed in the interventions. Conclusion: The scoping review highlights current practices informing interventions for primary caregivers of children with autism spectrum disorder and may serve as a guide by practitioners and researchers for developing future evidence-based interventions for this population.

Objective: The study was conducted to examine the caregiver burden and stress coping styles of parents of children with Autism Spectrum Disorder (ASD)., Design and Methods: This descriptive cross-sectional study was conducted with parents of 131 children with ASD who were enrolled in a private education practice center in Istanbul between August 2015 and August 2016. The data were collected using a questionnaire prepared by the researchers, and the "Caregiver Strain Index" and "Ways of Coping Questionnaire.", Results: The mean age of the children in the sample group was 4.83 ± 0.99 years; 63.4% were boys. Nearly 40% (38.2%) were diagnosed as having ASD at the age of 2 years. It was determined that the parents of children with ASD had a higher burden of care (CSI mean score: 7.68 ± 4.30). The caregiver burden was significantly higher (p < 0.05) for parents of one child as compared to parents with more children, and parents with daughters compared to parents with sons. In addition, the mothers were found to have higher scores of 'submissive approach' and 'seeking social support' than fathers., Conclusion: Parents of children with ASD had a higher caregiver burden. Scores of approach types of self-confident, helpless, optimistic, and seeking social support were significant predictors of caregiver burden., Practice Implications: Nurses are encouraged to take a more active role to improve the health of children with autism and families should contribute to mitigating the burden care of parents by informing families about social support systems., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Introduction: For children with autism spectrum disorder (ASD) and sensory-processing disorder (SPD), an unexpected visit to the emergency department can be an overwhelming experience that creates intensifying behaviors and an unsafe clinical interaction for the child, nurses, and providers. Although resources exist to help nurses work with this specialized group, there are limited examples of the challenges and opportunities of modifying an emergency department to be a place where nurses can provide sensory-informed care., Methods: Guided by Watson's Theory of Caring, nurses and child life specialists in our pediatric emergency department initiated a practice improvement (PI) project to create a sensory-friendly emergency department. The nurses (1) engaged with community members and families, (2) examined current practices, (3) modified the patient care environment, (4) collaborated in an interprofessional educational session, and (5) created a shared vision for the modified patient-care environment., Results: This article describes the nurse-initiated PI process and the journey to create an evidence-based sensory-friendly pediatric emergency department. A model is presented so that other facilities can embark on their own initiative, and case studies are used to evaluate project outcomes., Discussion: Integrating current evidence, staff suggestions, community input, and expert advice allowed us to find creative solutions to the unique sensory needs of children who visit our emergency department. Modifying both the patient-care environment and the patient-flow process to accommodate for the needs of children with ASD/SPD created a more peaceful and healing environment for children and their families and gave nurses the support they needed to provide sensory-informed care., (Copyright © 2018 Emergency Nurses Association. Published by Elsevier Inc. All rights reserved.)

Extended longevity among adults with Intellectual Disabilities (ID) and increasing rates of diagnosis of Autism Spectrum Disorders (ASD) mean that parents are unlikely to remain primary carers throughout the lifecourse of adults with ID and ASD. In the context of decreased funding for disability services and policy moves toward de-congregated living, non-disabled (ND) siblings of people with ID/ASD are increasingly likely to be drawn into support and care roles for their siblings. Drawing on literature on moral emotions and the ethics of care, and on narratives collected from 25 ND siblings in Ireland in 2015/6, this paper explores the emotional dynamics entwined in the care and support roles ND siblings engage in. Findings indicate that relationships forged in childhood underpinned the moral ethic to care exhibited by many participants and that their caregiving was experienced as moral practice and emotional engagement, shaped by and constitutive of biography and moral identity. When making care choices, siblings undertook evaluative judgement of their own behaviours, which was informed by perceptions about obligations to care and about what constitutes good care. Decisions about care had emotional resonance, with guilt, other-oriented empathy and righteous-anger emerging as the key emotions in the narratives. Dilemmas between autonomy and relatedness caused siblings to grapple with feelings of resentment and guilt, and many struggled to exercise self-compassion in the face of perceived moral failings. Others experienced conflict characterised by a struggle to reconcile competing care and nurturing expectations within their intimate relationships. Through ongoing self-evaluation of their care behaviours siblings' moral identities were continually reconstituted. It is imperative that service providers and professionals understand and acknowledge such moral and emotional dynamics when working with people with ID/ASD and their families., (Copyright © 2019 Elsevier Ltd. All rights reserved.)

Background: Although studies have examined quality of life (QOL) among family caregivers of individuals with autism spectrum disorder (ASD), little is known about potential differences in QOL based on the age of the individual with ASD, particularly in relation to caregivers' needs, beliefs and coping mechanisms., Method: This study investigated 132 caregivers of school-age children and 61 caregivers of transitioning young adults with ASD on measures of caregiving, strain, coping, family needs and QOL., Results: The results indicated that there were no significant differences in QOL based on the age of the individuals with ASD, although parents of children reported significantly more caregiving behaviours, with coping, internalized strain and health information needs predicted mental health QOL., Discussion: Age of the individual with ASD was not significantly related to caregivers' QOL. More research is needed to determine independent predictors of caregiver QOL across the lifespan., (Published 2018. This article is a U.S. Government work and is in the public domain in the USA.)

Person-first language is considered a central component to recovery oriented person-centred care; however, there is a growing adoption of identify-first language among autistic advocates. Mental health nurses require awareness of critical autism issues given the high prevalence of comorbid psychopathology. This scoping review of literature from 2010 to 2018 regarding identifying language for people on the autism spectrum identified a paucity of research that systematically explored and considered antagonisms, representation, and potential consequences of either of the current modes of identifying language becoming dominant. Mental health nurses should appreciate the complexity within identifying language and adopt context dependent language.

Objectives: Caregivers play a critical role in educating their youth with autism about sex and relationships; yet, we know little about caregivers' ability to deliver this support, youth's perspectives, or the congruence of youth and caregiver experiences. To help fill this gap, we explored and compared the perspectives of caregivers and their youth with autism spectrum disorder about and interactions regarding sex and relationships., Methods: We conducted qualitative one-on-one interviews with youth (n = 27) and focus groups with their caregivers (n = 29). A semi-structured guide elicited information from both the groups about the youth's physical, emotional, and social transition to adulthood. Thematic analysis, including coding and analytical memos, identified key themes within and across youth and caregiver discussions about sex and relationships., Results: Thematic analysis of interviews revealed overarching themes about companionship, interest and experience, and access to sexual information across both the groups. Themes included different nuances among caregivers and youth, however. Caregivers expressed more future-oriented concerns than youth and overestimated their knowledge of their youth's interest and experience with sex and comfort confiding in caregivers. Youth described relationships and information sources of which their caregivers were unaware., Conclusion: Interventions for both caregivers and youth can support healthy and safe intimate relationships among youth with autism spectrum disorder. By comparing youth and caregiver dialogues, this study adds to what we know, and it can be used to develop a blueprint for improving communication patterns that not only include but also extend well beyond sexual health.

Chris Barber, Visiting Lecturer (Learning Disabilities), Birmingham City University ( chris.barber@bcu.ac.uk ), offers tips for nurses working with adults with autism spectrum conditions.

Patients should be at the heart of everything we do. The aim should always be to achieve healthcare outcomes by involving patients fully in their own care, with decisions made in partnership with clinicians, rather than by clinicians alone: 'no decision about me, without me' (DH 2012). This article details a plan of care for an 18 year old male patient with a moderate level of learning disability who was scheduled for a tonsillectomy at a local NHS trust hospital. It focuses on the management of the patient's anxiety, nausea and pain. In accordance with the Health and Care Professions Council's code of confidentiality (HCPC 2014) the location and individual names of places and people concerned will not be disclosed. The patient presented at the pre-assessment appointment as having a learning disability consistent with a diagnosis of being on the autistic spectrum. More specifically, he had cognitive impairment which affected his ability to understand complex information. This, combined with a reduced ability to cope independently, formed the rationale for the attendance of a carer throughout his perioperative journey. According to the National Autistic Society (NAS) there are approximately 700,000 people with autism spectrum disorder (ASD) in the UK ie more than 1 in 100. Autism is a part of daily life for 2.8 million people (NAS nd).

School nurses are essential healthcare providers to children with autism spectrum disorder (ASD). In providing this care, school nurses may need to accommodate the unique challenges that children with ASD may face, including but not limited to sensory sensitivities, communicative and social difficulties, difficulties remembering event sequencing and directions, and poor time management skills. The aim of this article is to provide school nurses and healthcare providers evidence-based interventions and strategies that they may use to increase the compliance of hygiene behaviors and routines for children with ASD.

Background: Chronic life stress, such as the stress of caregiving, can promote pathophysiology, but the underlying cellular mechanisms are not well understood. Chronic stress may induce recalibrations in mitochondria leading to changes either in mitochondrial content per cell, or in mitochondrial functional capacity (i.e., quality)., Methods: Here we present a functional index of mitochondrial health (MHI) for human leukocytes that can distinguish between these two possibilities. The MHI integrates nuclear and mitochondrial DNA-encoded respiratory chain enzymatic activities and mitochondrial DNA copy number. We then use the MHI to test the hypothesis that daily emotional states and caregiving stress influence mitochondrial function by comparing healthy mothers of a child with an autism spectrum disorder (high-stress caregivers, n = 46) with mothers of a neurotypical child (control group, n = 45)., Results: The MHI outperformed individual mitochondrial function measures. Elevated positive mood at night was associated with higher MHI, and nightly positive mood was also a mediator of the association between caregiving and MHI. Moreover, MHI was correlated to positive mood on the days preceding, but not following the blood draw, suggesting for the first time in humans that mitochondria may respond to proximate emotional states within days. Correspondingly, the caregiver group, which had higher perceived stress and lower positive and greater negative daily affect, exhibited lower MHI. This effect was not explained by a mismatch between nuclear and mitochondrial genomes., Conclusions: Daily mood and chronic caregiving stress are associated with mitochondrial functional capacity. Mitochondrial health may represent a nexus between psychological stress and health., (Copyright © 2018 Society of Biological Psychiatry. Published by Elsevier Inc. All rights reserved.)

Aim: The purpose of this study was to examine the psychometric properties and the theoretical structure of the mindful attention awareness scale (MAAS) with parents of children with autism spectrum disorder (ASD) in Jordan., Method: A sample of 104 parents of children with ASD in Jordan completed the study. Exploratory and confirmatory factor analyses were conducted to assess the factor structure of MAAS. Internal consistency was assessed using Cronbach's alpha. The convergent validity was assessed using Pearson's product-moment correlations between the MAAS and measures of psychological distress and Quality of life., Results: A confirmatory factor analysis showed that the modified 13-item MAAS fits the data significantly better than the original 15-item model. However, both the 13-item and the 15-item models showed a single factor structure, with excellent internal consistency and convergent validity., Conclusion: This preliminary study supports using the MAAS in Arab parents of children with ASD., (Copyright © 2018 Elsevier Inc. All rights reserved.)

This study examined the relationships between autism spectrum disorder (ASD) symptoms, care-related activities, and satisfaction with life (SWL) in 184 parents caring for a child with ASD in New Zealand. The relationships between coping styles and SWL were also examined. The parents' SWL scores indicated they were slightly dissatisfied with their lives. A stepwise linear regression showed three predictors (care-related health problems, carer esteem and financial difficulties) explained 47% of the variance in SWL scores. Several coping styles were associated with lowered SWL, and only emotional support was related to increased SWL. The regression model provides a focus for monitoring parental wellbeing, and stresses the importance of recognition and support for the substantial responsibilities parents of children with ASD face.

Telehealth is a potential solution to limited access to specialized services for children with autism spectrum disorder (ASD) in rural areas. We conducted a feasibility trial of parent training with children ages 3-8 with ASD and disruptive behavior from rural communities. Fourteen children (mean age 5.8 ± 1.7) from four telehealth sites enrolled. Thirteen families (92.9%) completed treatment, with 91.6% of core sessions attended. Therapists attained 98% fidelity to the manual and 93% of expected outcome measures were collected at week 24. Eleven of 14 (78.6%) participants were rated as much/very much improved. Parent training via telehealth was acceptable to parents and treatment could be delivered reliably by therapists. Preliminary efficacy findings suggests further study is justified.

We previously reported a 2 × 2 randomized clinical trial of atomoxetine (ATX) and parent training (PT) for attention deficit hyperactivity disorder (ADHD) symptoms and behavioral noncompliance in 128 children with autism spectrum disorder, ages 5-14 years. Children were randomized to one of four conditions: ATX alone, placebo alone, ATX + PT, or PT + placebo. Both ATX and PT improved some indices of ADHD and behavioral compliance. In this report, we describe parent stress over time and across conditions. All four treatments improved parent self-rated stress from baseline to week 10. However, there were no statistically significant differences between treatment groups. Significantly more improvement in parent stress scores was observed for clinical responders than non-responders. ClinicalTrials.gov Title: Atomoxetine, Placebo and Parent Management Training in Autism (Strattera) ClinicalTrials.gov Identifier: NCT00844753.

There is a long history of research on parents and caregivers of individuals within autism. Parents and other primary caregivers typically play the most important part in the lives of persons with ASD although the need for support as the child becomes of age varies widely. This special issue includes 30 articles on central areas related to parenting and caregiving for people with ASD. Some of the key themes include intervention and training, mental health issues related to parent and family stress, measurement and assessment, and parent-child transactional processes. Other articles in this issue consider different but equally important topics such as sibling as potential future caregivers and parent support of preschool peer relationships.

Given the emphasis on early screening for ASD, it is crucial to examine the concordance between parent report and clinician observation of autism-related behaviors. Similar items were compared from the First Year Inventory (Baranek et al. First-Year Inventory (FYI) 2.0. University of North Carolina, Chapel Hill, 2003), a parent screener for ASD, and the ADOS-2 Toddler Module (Lord et al. 2013), a standardized ASD diagnostic tool. Measures were administered concurrently to 12-month-olds at high and low risk for ASD. Results suggest that clinicians and parents rated behaviors similarly. In addition, both informants rated high-risk infants as more impaired in several social-communication behaviors. Furthermore, the format of questions impacted agreement across observers. These findings have implications for the development of a new generation of screening instruments for ASD.

We report on parent outcomes from a randomized clinical trial of parent training (PT) versus psychoeducation (PEP) in 180 children with autism spectrum disorder (ASD) and disruptive behavior. We compare the impact of PT and PEP on parent outcomes: Parenting Stress Index (PSI), Parent Sense of Competence (PSOC), and Caregiver Strain Questionnaire (CGSQ). Mixed-effects linear models evaluated differences at weeks 12 and 24, controlling for baseline scores. Parents in PT reported greater improvement than PEP on the PSOC (ES = 0.34), CGSQ (ES = 0.50), and difficult child subdomain of the PSI (ES = 0.44). This is the largest trial assessing PT in ASD on parent outcomes. PT reduces disruptive behavior in children, and improves parental competence while reducing parental stress and parental strain.

Sleep is a basic biological process supporting emotion regulation. The emotion regulation function of sleep may be particularly important in the context of chronic stress. To better understand how chronic stress and sleep interact to predict mood, 66 parents of children with autism completed daily diaries assessing parenting stress, negative mood, and sleep quality for 6 consecutive days. Hierarchical linear modelling revealed that daily negative mood was predicted by between-person differences in parenting stress and between-person differences in sleep efficiency. Further, between-person differences in sleep efficiency and within-person differences in sleep satisfaction moderated the impact of stress on mood. These data suggest that sleep disturbances may exacerbate the association between stress and mood in the context of chronic parenting stress. Further, high parenting stress appears to heighten the impact of transient sleep disturbances on mood., (Copyright © 2017 John Wiley & Sons, Ltd.)

Early identification of Autism Spectrum Disorders (ASD) has the potential to elicit effective early intervention, improving children's level of functioning and developmental trajectories as well as reducing parental stress. Multiple sources of information, including several informants may facilitate early identification. This study examined the agreement between parents and day-care professionals on how they retrospectively recall early symptoms associated with ASD. In this study, we found fair to excellent agreement on early symptoms between parents and day-care professionals. The finding indicates that day-care centres may be a supplementary area for early identification of ASD. More research is needed to explore day-care centers possible role in this early identification.

Sleep disorders affect a large portion of those with autism spectrum disorder. Behavioural interventions have been found to increase appropriate sleep behaviours. This study sought to examine the efficacy of two stimulus control interventions (bedtime fading and positive routines) on total sleep duration, sleep onset latency and frequency and duration of night wakings for children with autism using two multiple baseline designs. Secondary dependent variables, namely, educational opportunities, challenging behaviours, parent acceptance and social validity were also analysed. Results suggest some efficacy for both interventions. Increased total sleep duration and decreased sleep onset latency were achieved with bedtime fading. Positive routines showed mixed results with decreased sleep onset latency and increased total sleep duration for two of three participants.

There is a lack of measures that reflect the intervention priorities of parents of children with autism spectrum disorder (ASD) and that assess the impact of interventions on family experience and quality of life. The Autism Family Experience Questionnaire (AFEQ) was developed through focus groups and online consultation with parents, and reflected parental priorities. It was then administered to the parents of children enrolled in the Pre-school Autism Communication Trial and its 6-year follow-up study. The AFEQ showed good convergent validity with well-established measures of child adaptive functioning, parental mental health and parental wellbeing. It was sensitive to change in response to a parent-mediated intervention for young children with autism, showing treatment effect at treatment endpoint which increased at six-year follow-up.

Nurse practitioners working in the primary care setting will commonly see children with autism spectrum disorder. It is important for clinicians to be vigilant for subtle developmental signs that can lead to early identification and diagnosis. This article presents information on assessment, screening, the responsibilities of coordinating services, and ways to support families.

Aim: This study examines the role of mindfulness in predicting psychological distress in Arab parents of children with autism spectrum disorder (ASD)., Method: In this descriptive study, parents of 104 children with ASD completed measures of psychological distress and mindfulness. The severity of autism in children was measured using the DSM-V criteria., Results: After controlling for parental age and gender and the severity level of ASD, mindfulness was significantly associated with the levels of anxiety, stress, and depression in parents (anxiety: β = 0.49, p < .001; stress: β = 0.55, p < .001; depression: β = 0.53, p < .001)., Conclusion: Mindfulness-based intervention may help to reduce psychological distress in Arab parents of children with ASD., (© 2016 Wiley Periodicals, Inc.)

Background: Social support has been described as a vital resource for families with children with disability. Although the benefits of social support have been described, little is known about the utilisation patterns in families of young children with autism spectrum disorder (ASD)., Method: In a community sample of 78 American families with children (2-6 years) with ASD, this study examined the utilisation and usefulness of social support. Child, family, and service variables related to social support were explored., Results: Mothers of children with ASD reported using a combination of formal and informal supports, and these were perceived to be helpful. Sociodemographic variables, child behaviour problems, satisfaction with the autism diagnostic process, and access to information about ASD predicted social support utilisation., Conclusion: Social support utilisation varies as a function of different child, family, and service variables. Understanding these variables may help professionals guide families in access to and use of social support., Competing Interests: Disclosure statement No potential conflict of interest was reported by the authors.

Sensory behaviors are widely reported in autism spectrum disorder (ASD). However, the impact of these behaviors on families remains largely unknown. This study explored how caregivers of minimally verbal children with ASD responded to their child's sensory behaviors. Using a mixed-methods approach, we examined two variables for each endorsed child behavior: (1) Did the caregiver respond/try to change the behavior? and (2) What response did they employ? Caregivers did not differ in the frequency of responses to hypo- or hyper-responsive behaviors but employed different responses. Caregivers responded to more social sensory behaviors and predominately changed their own behavior in response to their child's. Our findings demonstrate how extensively caregivers adapt to their child's behaviors and vary their response dependent on behavior exhibited.

Purpose: Caring for children with autism spectrum disorder (ASD) can be highly demanding and can put significant strain on caregivers. To date, little is known about the extent to which caregivers of children with ASD experience increased levels of stress which may adversely affect health outcomes. The purpose of this secondary analysis was to compare caregivers of children with ASD and caregivers of typically developing children (TDC) in weight status, diet quality, perceived stress related to the parenting role, and functional health and well-being., Design and Methods: Caregivers of 25 children with ASD and 30 TDC completed the 2005 Block Food Frequency Questionnaire, the 36-item Short Form of the Parenting Stress Index (PSI/SF), and the Short Form Health Survey (SF-36) and had their heights and weights measured during an onsite visit. Diet quality was assessed using the Healthy Eating Index (HEI)-2010 and its dietary components and conformance to the 2010 Dietary Guidelines for Americans., Results: ASD caregivers did not differ significantly from TDC caregivers in body mass index or overweight/obesity prevalence (p ≥ .28), even when controlling for covariates. In univariate analyses, ASD caregivers consumed significantly fewer empty calories from solid fats, alcohol, and added sugars than TDC caregivers (p = .03), but they did not differ significantly in any other dietary outcomes including nutrient adequacy (p ≥ .10) and mean total HEI scores (p = .20). ASD caregivers, when compared to TDC caregivers, reported significantly greater parenting stress for the subscales difficult child and parent-child dysfunctional interaction as well as total stress (p < .001). In addition, 56% of ASD caregivers compared with 6.7% of TDC caregivers showed clinically significant levels of stress (p < .0001); a finding which remained statistically significant when controlling for covariates. ASD and TDC caregivers did not differ significantly in any SF-36 health domains related to functional health and well-being (p ≥ .10)., Practice Implications: Despite higher reported levels of stress, ASD caregivers did not differ significantly from TDC caregivers in diet- and health-related outcomes. Nurses and other health professionals should use comprehensive screening tools to assess overall caregiver stress and levels of resilience., (© 2017 Wiley Periodicals, Inc.)

Parent training (PT) has emerged as a promising treatment for disruptive behavior in children with autism spectrum disorder (ASD). This review summarizes the essential elements of PT for disruptive behavior in children with ASD and evaluates the available evidence for PT using both descriptive and meta-analytic procedures. We searched Medline, PsycINFO, and PubMed databases (1980-2016) in peer-reviewed journals for randomized controlled trials (RCTs) of PT for disruptive behavior in children with ASD. The systematic search of 2023 publications yielded eight RCTs involving a total of 653 participants. We calculated effect sizes using either raw post-treatment means and standard deviations for each treatment group (PT and control) or group mean differences with associated 95% confidence intervals (CIs). Differences in post-treatment means were converted to a standardized difference in means (SMD) for each primary outcome. Results support the efficacy of PT for disruptive behavior in children with ASD, with a SMD of -0.59 [95% CI (-0.88, -0.30); p < 0.001]. Across these eight studies, there was significant heterogeneity in the effect of PT on disruptive behavior. This variability is likely due to differences in sample size, number of treatment sessions, study duration, and control condition employed. Current findings provide solid support for the efficacy of PT for disruptive behavior in children with ASD. Future studies should focus on effectiveness trials to promote wider implementation of PT in clinical settings.