Experiences of accumulated stress among aging parent caregivers of adults with autism spectrum disorder

With the continuing increased incidence rate of autism spectrum disorder over the decades, there are increasing numbers of adults with autism who require varying levels of lifelong care, typically from parents. It is necessary to understand parents' lived experience of lifelong caregiving, and how their own aging process further impacts life quality. Furthermore, greater understanding of stressors, resources, appraisals, and coping among parent caregivers of children with "high functioning autism" who are transitioning into young adulthood is particularly necessary as services, needs, and experiences for both are nuanced due to functional status, deficits in the service system, and demographic disparities. Given lifespan aspects past research has not addressed, the study focused on development of a measure of parent accumulated stressors, and on interrelations of stressors, perceived social support, future time perspective, burden, satisfaction, and coping on health-related quality of life and meaning in life among 28 parents of young adults with autism. Although proposed quantitative analyses were not completed due to sample size, qualitative analyses on parent experiences and stressors revealed common themes of concern for child's future quality of life, complicated dynamics of providing help to their child overtime, and increased stress related to others' lack of understanding of their child. In total, 10 themes and multiple subthemes were identified in relation to aspects of accumulated stressors. Findings suggest parent stress with this specific population is complex, manifesting in nuanced ways at different life stages. Impacts of the COVID-19 pandemic are also explored, and implications for scientific advancement and clinical services are discussed. (PsycInfo Database Record (c) 2023 APA, all rights reserved)

Experiences of Parents and Practitioners Working with Middle School Students with ASD during the COVID-19 School Shutdown

People with Autism Spectrum Disorders (ASD) may be especially vulnerable to the effects of the COVID-19 pandemic due to their unique characteristics. This qualitative case study used interviews with instructional staff and parents to understand the experiences of both families and practitioners during the COVID-19 pandemic, and how this can inform the use of virtual instruction for students with ASD. Through the lens of Bronfenbrenner's ecological systems theory (1979) we examined how the different layers of our world shifted due to the pandemic, and what influence this had on our students with a diagnosis of ASD. Findings revealed several themes of among the interview transcripts, five main themes were observed: COVID-19, conflict of no control versus freedom, setting, technology use and preparation, and perspective.

Online Availability of a Robot Therapy for Children with Autism

In this paper we will present a case in which a robot therapy for children with autism was transferred from clinic to home conditions. The developed application enables the children to continue with the interventions in home conditions. This proved especially important in the COVID-19 pandemic. The application also allows monitoring of the child's activities, through which the therapist can later analyze the patient's behavior and offer appropriate therapy. The application shows reliable results and gives promise to develop beyond the user case we are considering. © 2023 IEEE.

The spectrum of the journey: Narrating identities during professional learning in pivotal response treatment for novice elementary teachers of students with autism spectrum disorder

In Ontario, Policy/Program Memoranda No. 140 (PPM 140) authorizes educators to utilize Applied Behavioural Analysis methods to support students with Autism Spectrum Disorder (ASD) in the classroom. Although typically favoured, inclusive policies are difficult to translate into practice without training (Lindsay et al., 2013). Novice educators (i.e., first five years of their career) are at the cusp of developing a teacher identity as they are shifting roles from that of a teacher candidate to what it means to be a professional teacher.Symbolic interactionism (SI) is one theory deemed useful for narrating and investigating identity. According to Blumer (1986), SI is a theory which investigates how individuals develop subjective meanings and how those meanings are reformed during an interpretive process producing different behavioural responses. Within the teaching profession, physical objects refer to space or material. Social objects refer to the interactions with individuals. objects are beliefs about professional development (PD) and identity (Blumer, 1986).Current studies do not address how teachers with larger classes may implement evidence-based practices, such as Pivotal Response Treatment (PRT). Even when general education teachers do receive training in PRT, an investigation into identity is missing. This doctoral dissertation investigates how a professional learning in PRT in Ontario may influence novice (i.e., first five years of their career) elementary educators' (i.e., JK-Grade three) identity as a teacher from a qualitative (i.e., narrative inquiry) design. Results from interviews, journals, and focus groups revealed themes. Physical objects included (1) accessibility to tangible resources and in-class trainings, (2) motivation/accountability, (3) barrier of time, (4) barrier of COVID-19, (5) barrier of staffing, and (6) barrier of size/needs of a classroom. Analyzing social objects revealed (7) student relationship building, (8) classroom staff communication, (9) low parental communication, and (10) distance support from administrators. Conversations around identity detailed how (11) early educational experiences and (12) previous characteristics associated with a teacher impacted a present (13) definition of teacher identity as the philosophy of teaching. This exposed themes such as (14) advocating for accommodations, (15) life-long learner, (16) self-reflective, (17) connection between personal/social self, and (18) a generalist role. (19) Micro-level solutions such as obtaining more strategies for themselves, and (20) macro-level solutions such as dedicating more time within teacher education programs and in-person training were also discoursed.Physical and social objects had a direct impact on objects. The first premise of symbolic interactionism, meaning, delved deep into how novice educators acted towards objects based on the meanings assigned to them throughout the study. Through social interactions (i.e., premise two - language) with myself as the researcher, the research study, the other participants, and stakeholders in their school climate, an investigation into the interpretation process (i.e., premise three - thought) revealed the above themes. (PsycInfo Database Record (c) 2023 APA, all rights reserved)

Problems and prospects of telemedicine in neurodevelopmental disorders

Following the COVID-19 health emergency, the use of telemedicine, that is the provision of health services through telecommunications and internet technologies, has spread. This work presents a critical review of the characteristics, purposes, advantages and problems of telemedicine in the care of patients with neurodevelopmental disorders and the prospects that can be hypothesized in its application even beyond the pandemic emergency. (PsycInfo Database Record (c) 2023 APA, all rights reserved) (Italian) La situazione di emergenza sanitaria da COVID-19 ha favorito la diffusione della telemedicina, cioe dell'erogazione di prestazioni sanitarie attraverso le tecnologie delle telecomunicazioni e di internet. Il presente lavoro offre una rassegna critica sulle caratteristiche, le finalita, i vantaggi e le problematiche della telemedicina nella presa in carico di pazienti con disturbi del neurosviluppo e sulle prospettive che se ne possono intravedere anche oltre l'emergenza pandemica. (PsycInfo Database Record (c) 2023 APA, all rights reserved)

A Catholic Christian understanding of autism spectrum disorder and grief within the funeral setting

Attending the funeral of a loved one offers bereaved individuals the opportunity to say goodbye to the deceased, providing closure to the grieving loved one and concretizing the deceased's death. Within the Catholic-Christian tradition, the funeral rite is seen as an act of worship, a part of the more powerful story of salvation. Within this belief system, the funeral rite represents the deceased loved one's soul returning to God in the afterlife. It is a way to thank God for the endless mercy He has shown His children on Earth. Under the helpful guidance and expertise of funeral directors, funeral proceedings allow family and friends to grieve the loss of their loved one, surrounded by a community of prayer and support, which can provide a step toward healing. However, certain groups of individuals are commonly deprived of the opportunity to participate in or attend the funeral of a loved one. People in the autism community can fall into this category, as their grief is often disenfranchised. Their experience of disenfranchised grief can be problematic, as excluding these individuals from the funeral service may impact their grief and mourning process. Because grief reactions within people with autism are understudied, little is known as how to adequately address the needs of these individuals at the funeral of a loved one. Also, many funeral directors do not receive formal training on how to work with people with autism. Thus, they may not be aware of the extra support that individuals with autism may need when attending a funeral service.Therefore, through the lens of Catholic-Christian integration, this dissertation seeks to examine how grief manifests within people with autism more fully. Specifically, this dissertation examines the role that funeral attendance may play in their grief processes. Moreover, using archival data from a pilot study, a training program for funeral directors will be examined for its effectiveness. Furthermore, interview data from professionals in the field of autism and grief will be analyzed and discussed. Combining a thorough literature review of the topic with data from professionals in the field, this dissertation aims to better understand how grief manifests within this population, specifically as it relates to funeral attendance. Throughout the dissertation, the need for grief studies and interventions within the autism community will be highlighted, especially during this time of increased death and subsequent grief and mourning due to the COVID-19 pandemic. (PsycInfo Database Record (c) 2023 APA, all rights reserved)

How did autistic children, and their parents, experience school transition during the Covid-19 pandemic?

Due to the Covid-19 pandemic, the start of the academic year in September 2020 was a unique time for those transitioning to a new school. This study aimed to explore the experiences of parents who supported autistic children making a range of different school transitions in 2020. Semi-structured interviews were carried out with 13 parents of autistic children in the UK, and data were analyzed with reflexive thematic analysis. For some parents, the Covid-19 pandemic negatively impacted on aspects of school transitions. However, other parents expressed the view that these same circumstances created opportunities to approach the school transition in a unique, improved manner. This article sheds light on the heterogeneity of experiences and perceptions of parents of autistic children, and highlights the need to examine the impact of Covid-19 on school transitions, including practices that it may be advantageous to retain. (PsycInfo Database Record (c) 2023 APA, all rights reserved)

Psychobiotics: a new way in psychopharmacology, or How do bacteria manage our brain?.

Psychobiotics are a special class of probiotics that have a beneficial effect on human mental health. During the last decade, convincing evidence has emerged that the gut microbiome influences mental health, cognitive abilities (learning and memory), and behavioral processes through neurological, metabolic, hormonal, and immunological signaling pathways. This review provides available information on the mechanisms of regulation of neuroimmune axes by the microbiota, describes the schemes of interaction of the microbiota with the intestinal nervous system and the brain-gut axis, the effect on behavior, cognitive functions and emotions, and discusses the evidence base and current views on the use of psychobiotics as a safe and effective therapeutic alternative to classic psychotropic drugs in depressive and anxiety disorders, stress, autism spectrum disorders, Alzheimer's disease and other conditions.Copyright © 2022, Interregional Association for Clinical Microbiology and Antimicrobial Chemotherapy. All rights reserved.

Mental Health of Jordanian Parents of Children with Autism Spectrum Disorder during COVID-19: A qualitative study

The COVID-19 pandemic has had significant psychological effects on par-ents, especially parents of children with autism spectrum disorders. This qualitative study explores the mental health of Jordanian parents of children with autism spectrum disorder during COVID-19. Through phone inter-views with nine such parents, this study found that the pandemic was a great source of stress and anxiety for parents of autistic children in Jordan, which was worsened by a lack of formal support for them and their children. This study also found that parents relied on their religious beliefs, shared childcare responsibilities, and engaged in social and family activities to mitigate the psychological toll of raising children during the COVID-19 pandemic. © 2022 Authors.

Parent perspectives on how the COVID-19 pandemic affected symptoms of autism spectrum disorder in their children

Autism is a disorder that is characterized by struggles with socialization and developmental delays that often involve much guidance and support. The purpose of this study was to explain the experience of parents as they attempted to manage behaviors related to symptoms of autism during the worldwide quarantine prompted by COVID-19.This study aimed to close the gap in literature and explore to see if there were any concerns that could be addressed by future studies. The study was framed aroundBowen's theory, which addresses emotions within a family unit, and the interdependence theory, which addresses how humans thrive to be together and they are dependent on one another. These theories work together in this study to explain the overall emotional experience of the family unit through the eyes of the caregiver. The study was a qualitative study with a descriptive approach that utilized seven semi-structured interviews to explain the individual experience. The data were then analyzed utilizing narrative analysis, using bracketing and clustering. Participants reported much intense emotion over watching their children struggle and experience meltdowns over things that were beyond the caregiver's control. The parents also experienced this additional stress, and it was difficult for them to manage and maintain their own mental health. Findings also suggested that parents continue to want the best for their children, even if access to the appropriate resources is difficult. The study addressed positive social change by calling attention to the inability for parents of children with autism to secure adequate resources,which can result in additional research to increase supports for these families. (PsycInfo Database Record (c) 2023 APA, all rights reserved)

Telehealth ROCKS at home: Pandemic transition of rural school-based to home-based telebehavioral health services

School-based telebehavioral health is one avenue to increase students' access to mental health services, especially for students who are less likely to access traditional community mental health settings due to a lack of transportation to distant sites, financial resources, and other barriers. With the shortage of child behavioral specialists in Kansas' rural and underserved communities, the Telehealth ROCKS (Regional Outreach to Communities, Kids, and Schools) program was created to address student behavioral health needs at school through telehealth. Since 2018, this program has provided approximately 1,600 mental health appointments. With public health mandates and a shift to online school, the COVID-19 pandemic led to a rapid telehealth transition from services in rural supervised school settings to direct-to-consumer services in homes. The authors describe the challenges and opportunities experienced during this transition across telebehavioral health specialties: (a) developmental/autism assessments, (b) developmental behavioral interventions to address problem behaviors, (c) child and adolescent psychological services, (d) medical complexity services, and (e) child and adolescent psychiatry. The authors then describe the overall transition from school-based to home-based services based on national Guidelines for Evidence-Based Child Telebehavioral Health domains: Patient Appropriateness, Crisis Management/Safety, and Logistics/Administrative Protocols. This experience and lessons learned can inform other school-based telemental health programs considering expansion to home-based services. The authors also discuss evolving telehealth policy and the reimbursement environment, with continued relevance due to continued COVID-19 outbreaks impacting school services and future public health emergencies affecting schools. (PsycInfo Database Record (c) 2023 APA, all rights reserved) Impact Statement This report shares lessons learned when rapidly transitioning the Telehealth ROCKS rural telebehavioral health services from the supervised school setting to the unsupervised home setting during the COVID-19 pandemic to meet escalating student behavioral health needs. (PsycInfo Database Record (c) 2023 APA, all rights reserved)

Virtual procedural facilitator training with video modeling: Impact on the opinion writing of elementary school-aged children with autism spectrum disorder

Autism Spectrum Disorder (ASD) impacts one in every 44 children in the United States (CDC, 2022) and is characterized by marked deficits in social communication with the presence of restricted interests and repetitive behaviors. Students with ASD are increasingly being educated in the general education classroom and are expected to meet the curricular demands thereof (Roberts & Webster, 2020). Due to the core features of their disability, these students often experience significant challenges in written expression. Writing, across content areas, is a primary means in which student learning is measured and evaluated. The COVID-19 pandemic forced educators to explore the use of technology, through the application of synchronous and asynchronous instructional models, to meet the needs of all students while also providing access to Evidence Based Practices (EBPs) and rigorous content (Cox et al., 2021). This study examined the effects of an intervention package consisting of video modeling and virtual coaching on the use of a procedural facilitator (PF) as a planning tool on the overall written quality of the opinion writing with elementary school-aged children with ASD. Writing quality was measured by the presence of planned paragraph elements, Correct Word Sequences (CWS), and Total Words Written (TWW). The significance, acceptability, and effectiveness of the intervention package was also explored. Results indicate a functional relationship between the intervention package and the presence of planned paragraph elements. The intervention package did not directly impact CWS or TWW. Participant perceptions of the intervention package were generally positive. Caregiver perceptions of the intervention package were generally positive. Implications of the present study are discussed along with limitations and recommendations for future research. (PsycInfo Database Record (c) 2023 APA, all rights reserved)

The impact of covid-19 lockdown on parents and young people with autism spectrum disorder (asd)

The spread of COVID-19 resulted in restrictive lockdowns. For families supporting young people with autism spectrum disorder (ASD), the service system was stripped away. The aim of this study was to explore the impact of this challenging situation on a group of Australian carers and parents of children and young people with ASD, with an intention to inform policy and practice based on the lived experiences of these families. A survey of parents of children and young people with ASD in Australia returned 117 responses, of which 86 responded to open-ended questions about COVID-19 lockdowns. Twelve parents responded to the invitation to be interviewed. Interview and survey data were analysed thematically. Five themes emerged: accessing support services, receiving support services online, changes in behaviour, higher levels of conflict, and impact on health and relationships. The experience of lockdowns under COVID-19 undermined informal and formal support systems, and had a particularly strong negative impact on the experiences of children with ASD and their families. These findings also provide support for understanding the social model of disability as a mainstay in the lives of children with disabilities and their carers. IMPLICATIONS The social model of disability was dismantled for children and young people and their carers during the COVID crisis. This unacceptable attack on the human rights of disabled people (people with a disability) needs future planning to ensure that it does not occur again. Future crises require more nuanced policy and practice responses that do not close off all child and family supports to children with ASD and their carers. (PsycInfo Database Record (c) 2023 APA, all rights reserved)

An evaluation of the quality of life of families of children with autism spectrum disorder during the COVID-19 pandemic

Coronovirus disease 2019 (COVID-19) is the disease resulting from infection with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). The response to the COVID-19 pandemic in many parts of the United States was to combat the spread of the virus through multiple methods, including stay-at-home orders, requirements to work from home, and children being unable to attend schools in person. Many families endured losses in income due to the stay-at-home orders. As children with autism spectrum disorder (ASD) often thrive on routines and predictability, this abrupt disruption in their everyday routine may have been especially stressful (Mostafavi, 2020), possibly exacerbating the distress of their caregivers during this time. Parents of children with ASD were faced with managing the stress of the pandemic without the usual support and structure previously provided by the child's school, for example. The purpose of this study is to evaluate the quality of life (QoL) of families of children with ASD during the COVID-19 pandemic. Parents of children with ASD completed an online survey, which comprises the Beach Center Family Quality of Life Scale (FQoL) (Hoffman et al., 2003), the Patient Health Questionnaire (PHQ-9;Spitzer, 1999), the Generalized Anxiety Disorder Screener (GAD-7;Spitzer, Kroenke, Williams, & Lowe, 2006), as well as questions pertaining to changes in the child's behavioral and academic functioning following the transition from in-person learning. It was hypothesized that families would not report high QoL, that there would be a positive correlation between support from the school and FQoL, a positive correlation between support from the school and changes in the child's functioning, and inverse correlations between FQoL and parental anxiety and depression. Data from 249 caregivers of children with ASD were analyzed utilizing descriptive statistics, bi-variate Pearson's r correlations, or one-way Analysis of Variance (ANOVA) along with frequencies and percentages for categorical demographic variables. Results indicated that most parents reported satisfactory FQoL, neither satisfaction nor dissatisfaction with the support from the child's school, and no changes in the child's functioning. However, greater reports of anxiety and depression were associated with reports of lower FQoL. Further research in this area could offer more insight into factors contributing to satisfactory FQoL in families of children with ASD during a pandemic or other major life-disrupting event. (PsycInfo Database Record (c) 2023 APA, all rights reserved)

Increasing compliance with vaccination procedures for individuals with autism

COVID-19 is a disease caused by the virus, SARS-CoV-2, and it can affect individuals differently. Some people may experience mild symptoms while others may experience severe illness or death. Vaccines that are authorized to protect against COVID-19 help the human body develop immunity to SARS-CoV-2 and reduce the risk of COVID-19 and its potentially serious complications. We evaluated the effects of graduated exposure and differential reinforcement to teach individuals with autism to comply with the administration of a COVID-19 vaccine. All three participants had a history of engaging in challenging behavior during previous vaccination procedures. Following the intervention, all participants successfully received two doses of a COVID-19 vaccine. The results of this study support previous research on graduated exposure and differential reinforcement as a treatment for increasing compliance with medical procedures for individuals with autism. (PsycInfo Database Record (c) 2023 APA, all rights reserved)

"Monday Feels Like Friday!” - Towards Overcoming Anxiety and Stress of Autistic Young Adults During Times of Isolation

Autistic young adults are at a higher risk of experiencing elevated mental and psychological distress during times of isolation, such as the COVID-19 pandemic, due to the challenges related to uncertainty and abrupt changes in every aspect of daily life. In this research, we aim to develop participant-centric interventions for assisting autistic young adults in addressing their anxiety and stress during times of isolation. We first conducted an exploratory literature review to gather the design requirements for an effective stress management technology. Based on our findings, we designed our initial high-fidelity prototype, MindBot, a mindfulness and AI-based chatbot application. We conducted an in-depth qualitative study (semi-structured interviews with 15 autistic young adults and a cognitive walkthrough with 20 participants who have training in HCI and usability evaluation techniques) to identify the design and usability issues to improve the effectiveness of MindBot. © 2023, The Author(s), under exclusive license to Springer Nature Switzerland AG.

Parental burnout in mother and fathers of children with and without autism spectrum disorder during the COVID-19 pandemic

Objective: This project aimed to identify if and how experiences and functioning differ for mothers and fathers of typically developing (TD) children and mothers and fathers of children with autism spectrum disorder (ASD) in the midst of the COVID-19 pandemic. The primary focus is on parental burnout and associated mental health problems, parenting behaviors, and child behavior problems. An exploratory aim examined the differences in parental resilience. Method: The sample was comprised of 185 parents of children with and without ASD ages 4 and 16 years. Parents self-reported on measures of psychological functioning, parental burnout, behaviors, and resilience, and child behaviors. Results: The ASD group was found to have higher levels of depression, anxiety, and all types of parental burnout. Fathers in the ASD group reported higher levels of anxiety, depression, and burnout than mothers. No differences were found between mothers and fathers or between groups in level of acceptance, but group and gender differences were found in use of psychological and firm control. Fathers in both groups reported lower levels of resilience related to knowledge of their child's characteristics relative to mothers. Fathers in the ASD group also reported lower levels of social support than mothers in the ASD group and fathers in the TD group. However, no differences were found between groups or between mothers and fathers in positive perception of parenting. Conclusions: This study sheds light on how parents' experiences of children with and without ASD differed during the COVID-19 pandemic. Given the high percentage of parents of children with ASD who reported parental burnout, it is essential for clinicians to assess parents' level of functioning and feelings related to their parenting role. This study also suggest that fathers are struggling more psychologically and are more severely burned out than mothers, which highlights the importance of the inclusion of fathers in both research and clinical services. (PsycInfo Database Record (c) 2023 APA, all rights reserved)

Evaluating the effectiveness of telehealth to teach functional communication skills

Individuals living with autism and other developmental disabilities do not always have access to effective behavior analytic intervention services due to the lack of geographical proximity to resources. The novel coronavirus (COVID-19) pandemic further posed unprecedented challenges to not only obtain access to resources and treatment, but unique challenges to the delivery of applied behavior analysis (ABA). Recent research and advances in telecommunication technologies have made it possible to provide behavioral healthcare services remotely. In this study, a concurrent multiple-baseline design across behaviors was used to evaluate the effectiveness of utilizing telehealth to teach functional communication. Four child-research assistant dyads participated. All dyads received training through telehealth. Results showed that telehealth was an effective modality for teaching mands and tacts to individuals diagnosed with autism spectrum disorder (ASD). (PsycInfo Database Record (c) 2022 APA, all rights reserved)

Sibling implemented enhanced milieu teaching for language development of children with autism

The diagnostic characteristics of autism spectrum disorder (ASD) includes challenges in social communication skills. Among different components of social communication, language, particularly vocabulary, must be supported early in children's development as language is shown to be associated with academic, social, cognitive, and adaptive skills and their development trajectory. Enhanced milieu teaching (EMT) is one of evidence-based, naturalistic interventions that are designed to support the vocabulary development of young children with ASD. EMT is often implemented by caregivers, therapists, or teachers;however, there is no study that evaluated the effectiveness of sibling-implemented EMT on the vocabulary use of children with ASD. With the rise of COVID-19, there is an increased duration of family interactions at home which led to the need for more structured and effective strategies for social interactions, especially for children with ASD. As siblings frequently engage in social interactions such as play, training older siblings to facilitate effective communication and play with their younger siblings with ASD could improve the language development of children with ASD as well as the siblings' social interactions. Adapting a multiple probe design, the study examined the effects of sibling-implemented EMT with virtual performance feedback for the siblings without ASD on the siblings' implementation fidelity of EMT and language outcomes and percentage of responses by children with ASD. Generalization with a novel material and maintenance over one week, two weeks, or one month was measured. Social validity questionnaires were completed by the siblings and the caregivers after the intervention. The findings provide implications for family-centered evidence-based practices, particularly through the use of virtual training for family members including the siblings of children with ASD. (PsycInfo Database Record (c) 2022 APA, all rights reserved)

Suicide and autism: A lifespan perspective

People who are diagnosed with Autism Spectrum Disorder (ASD) are at increased risk of suicidal behaviour compared to the general population;recent population-based studies demonstrate a three- to sevenfold increased risk of premature death by suicide. This chapter provides an overview of: (a) the current literature regarding risk and prevalence of suicide behaviour in autism;(b) the role of intellectual disability/intellectual developmental disorder in suicide in autism;(c) correlates, risk and protective factors;(d) dimensional constructs of suicide, including autistic traits;(e) current approaches to suicide assessment, including potential modifications;and (f) suicide prevention and service access. We consider these topics by drawing on state-of-the-art research, the perspective of lived experience, and consideration of the potential impacts of major events such as the coronavirus (COVID-19) pandemic. (PsycInfo Database Record (c) 2022 APA, all rights reserved)