Experience and coping strategies of parents of children with autism: A qualitative study

Parents of adolescents with autism spectrum disorder (ASD) experience the challenges of navigating the health care system, locating information about ASD, lacking an understanding of prescribed medications, and experiencing minimal social support from health care providers. The purpose of this phenomenological study was to describe the experiences of parents who manage the health needs of an adolescent with ASD. Qualitative interviews were conducted at a university setting with 12 parents of 10 adolescents with ASD residing in Central Virginia. Data were analyzed using Moustakas' method in which the phenomenologist asks the following questions: What are the individual's experiences and in what context did they experience them? This study maximized credibility using 3 strategies: prolonged engagement, peer debriefing, and member checking. "Parents needing assistance" emerged as the essence of the parents' experiences. Four themes representing the essential challenging elements of the parents' experiences included concern with medications, frustrations with health care services, recognizing secondary health issues, and the need for resources and services. Findings of the current study revealed key factors to be considered in the development and delivery of health care for adolescents with ASD. These include creating and planning interventions for parents, sharing information about resources and services, and collaborating with others in the health care field. Additional research, both qualitative and quantitative, is needed to understand how parents and adolescents with ASD experience this transitional period.

Introduction: Autism spectrum disorder refers to neurodevelopmental disabilities that affect social, communicative, and behavioural development. Parents of children with autism spectrum disorder often face parenting challenges, such as difficulties understanding and communicating with their children. Such factors can lead to poor mental well-being. Mental well-being is a state of positive psychological and emotional health. Methods: A cross-sectional study was conducted to determine whether there was a relationship between parental mental well-being and family experience. The Autism Family Experience Questionnaire measured family experience and quality of life. The Warwick Edinburgh Mental Well-being Scale measured parents’ mental wellbeing. Results: A total of 101 parents of children with autism spectrum disorder from Slovenia participated in the study. A small correlation between parental mental wellbeing and the positive family experience was found. The mental well-being of parents negatively correlates with family life and child symptoms and positively with the experience of being a parent and child development. Parents reported poor support from the health system. Parents who devote more time to themselves also have better mental well-being. Parents report a lack of support from health professionals, resulting in poor mental well-being. Discussion and conclusion: An integrated person-centred approach should be introduced to reduce stress, emotional burden, and physical fatigue by the parents of children with autism spectrum disorder and improve their mental well-being. Future research could investigate possible solutions for improving the mental wellbeing of parents of children with autism spectrum disorder.

In Indonesia, philosophy is often stigmatized as impractical, confusing, or threatening to faith, despite limited evidence reflecting students’ lived experiences. This study explores how Theology and Islamic Philosophy students experience learning philosophy within Islamic higher education. A narrative inquiry design was employed with eight purposively selected final-year students (n = 8) from four State Islamic Universities in Central Java. Participants were drawn from Theology and Islamic Philosophy departments. Data were collected narrative frames and semi-structured interviews, and analyzed using thematic narrative analysis. Trustworthiness was ensured through member checking, peer debriefing, audit trails, and reflexive journaling. Participants initially perceived philosophy as intellectually demanding and potentially threatening to faith, leading to academic and spiritual anxiety. Through active, reflective, and dialogical engagement, they gradually negotiated these tensions and reinterpreted philosophy as a meaningful resource for understanding faith and life. This transformation fostered enhanced critical reasoning, inclusivity, and reflective problem-solving practices.The findings suggest that students’ negative preconceptions can be reshaped through pedagogical approaches that emphasize reflection and dialogue. Incorporating guided discussions and narrative writing into philosophy instruction may support deeper engagement and reduce perceived conflicts with faith. Such strategies contribute to more constructive and meaningful learning experiences in Islamic higher education.

Facilitators and Barriers that Impact the Transition to Adulthood for Young Adults with Autism Spectrum Disorder (ASD)

Children with autism spectrum disorder (ASD) may experience sleep difficulties that worsen into adulthood and negatively influence both child and family, yet the experience is not well understood. Understanding the family's experience can inform occupational therapy providers, future research, and practice guidelines. To examine experiences surrounding sleep for families raising a young adult with ASD (YA-ASD). Qualitative study in the phenomenological tradition of Moustakas (1994). Experienced researchers analyzed transcripts from in-depth, in-person interviews to triangulate data, distill themes, and construct the essence of family experience. Trustworthiness was established through member checking, audit trails, and epoché diaries that were maintained throughout data analyses. Community setting (large city in the northeastern United States). People who self-identified as living in a family arrangement that included a YA-ASD age 15-21 yr, able to verbally participate in English. Families with children diagnosed with developmental disabilities other than ASD were excluded. Six eligible families identified through volunteer sampling participated. The participants' sociodemographic diversity was limited across household income, education level, and ethnicity. All YA-ASD in this study were limited verbally and unable to contribute. Analyses of interview transcripts revealed five themes that form the essence of the families' experience surrounding sleep. Sleep issues for YA-ASD continue into adulthood and affect the entire family because of continuous co-occupation; occupational therapy support is therefore important for families of YA-ASD. The lack of effective evidence-based interventions supporting the YA-ASD population also reveals an area for growth. What This Article Adds: The results indicate the importance of addressing sleep for YA-ASD and their families in occupational therapy practice because of its considerable impact on family life.

The intersection of autism spectrum disorder and intellectual disability

Autism Spectrum Disorder (ASD) poses a great developmental issue particularly in communication, social interaction, and adaptive functioning areas where such children need consistent and specialized caregiving. The lack of diagnostic centers, the insufficiency of professional care, the lack of knowledge, and social stigma are limiting factors in the effective management of ASD in Pakistan, where the primary caregiver of the child is the parent. The objectives of the present studies are to identify the specific challenges faced by parents of children with ASD in Pakistan, to explore the coping mechanisms employed by parents to manage these challenges, to evaluate the effectiveness of existing parental support system in Pakistan, to assess the impact of parental support on the developmental outcomes of children with ASD, to investigate the role of socio-cultural factors in shaping parental support system, to Provide evidence-based recommendations to enhance parental support structures for families of children with ASD in Pakistan. The current research utilized the qualitative research design in its attempt to investigate the role of parental support system in the development of children with Autism Spectrum Disorder (ASD) in Pakistan. Qualitative approach was chosen to ensure that parents lived experience, perceptions and coping strategies were captured in their socio-cultural background. The research was done in the selected urban and semi-urban regions of Pakistan. The research on special education centers, therapy clinics, and community-based organizations offering services to children with ASD were the sources of data collection. The target group was the parents or primary caregivers of children who had ASD. The sample comprised of mothers and fathers who were taking care of a child with ASD over a period of at least one year. The parents of children with severe co-occurring physical disabilities were not included in the research. Participants with pertinent experience in caregiving were chosen by using a purposive sampling method. This approach allowed incorporating parents having different socioeconomic and educational statuses. The data collection process would go on until data saturation is attained, usually 15-25 participants. The data were gathered by using semi-structured, in-depth interviews. The interview guide was formulated against the objectives and conceptual framework of the study. Interviews were done in either English or Urdu and they took about 45-60 minutes.

BACKGROUND Wait times for autism spectrum disorder (ASD) diagnosis contribute to delayed access to ASD interventions, which are most effective at young ages. General paediatricians (GPs) represent a potential resource for increasing diagnostic capacity and decreasing wait times for ASD diagnostic assessments. No current research has yet to solicit perspectives of non-urban GPs on ASD diagnosis. OBJECTIVES The objective of this project was to explore the perspectives of GPs practicing in smaller Ontario communities regarding their diagnostic processes and their role in ASD diagnostic assessment. DESIGN/METHODS We performed a qualitative study using thematic analysis of GPs’ experiences with cases of suspected ASD. GPs from three small/medium-sized Ontario communities (population range: 14,000–64,000) were recruited to provide variation in perspectives. Semi-structured interviews were conducted, transcribed, and coded. A preliminary theoretical framework was developed and sent to participants with a request for feedback (member checking). Feedback did not necessitate any significant changes to the framework. RESULTS 14 GPs participated in interviews (7 from Community A, 4 from Community B, 3 from Community C). All participants considered ASD diagnosis to be in the GP’s scope of practice and part of their service to their community. Many sought out and self-funded additional ASD training as necessitated by their practices. Our framework identified three stages in the diagnosis of ASD: pre-assessment (gathering information prior to the first clinic visit), diagnosis, and service access. All of these stages are influenced by ecological factors including the individual patient/family, individual physician factors, factors reflecting the GP’s community group practice (i.e., how the group has decided its members will approach developmental referrals), and factors concerning the broader system of ASD care. CONCLUSION GPs practicing in non-urban Ontario communities routinely diagnose ASD and see this as part of their scope of practice. Compared to their urban counterparts, they emphasized a stronger sense of responsibility to provide this service to their communities. Strategies aimed at increasing diagnostic capacity should target group practices, increase availability of ASD specific training programs, and improve efficiency of clinic visits through pre-clinic information gathering. Further research regarding accuracy of GP assessments is required.

ABSTRACTThe overall purpose of this research was to explore the experiences of families living with a child with autism spectrum disorder (ASD). This paper reports the experiences of siblings of children with ASD, from the perspective of both siblings and parents. Using a phenomenological case study design, participants completed face sheets to provide context for one-on-one, semi-structured interviews, which were transcribed verbatim, and verified via member checks. Van Manen’s (1990) selective approach was used for data analysis. Siblings and parents described that the children with ASD made their siblings the targets of their aggression, and siblings spent less time with parents the children with ASD required more attention. It was also acknowledged that the siblings were more mature as a result of having a sibling with ASD. Families acknowledged that the relationship between children with ASD and their siblings would not differ if their children did not have ASD. This work highlights the importance of examining the family as a unit to provide a multifaceted perspective of how having a child with ASD affects their siblings.

Several genetic testing techniques have been recommended as a first-tier diagnostic tool in clinical practice for diagnosing autism spectrum disorder (ASD). However, the actual usage rate varies dramatically. This is due to various reasons, including knowledge and attitudes of caregivers, patients, and health providers toward genetic testing. Several studies have therefore been conducted worldwide to investigate the knowledge, experiences, and attitudes toward genetic testing among caregivers of children with ASD, adolescent and adult ASD patients, and health providers who provide medical services for them. However, no systematic review has been done. To systematically review research on knowledge, experiences, and attitudes towards genetic testing among caregivers of children with ASD, adolescent and adult ASD patients, and health providers. We followed the Preferred Reporting Items for Systematic Reviews and Meta-analyses guidelines and searched the literature in three English language databases (PubMed, Web of Science, and PsychInfo) and two Chinese databases (CNKI and Wanfang). Searched literature was screened independently by two reviewers and discussed when inconsistency existed. Information on characteristics of the study, characteristics of participants, and main findings regarding knowledge, experience, and attitudes of caregivers of children with ASD, adolescent and adult ASD patients, and health providers concerning ASD genetic testing were extracted from included papers into a charting form for analysis. We included 30 studies published between 2012 and 2022 and conducted in 9 countries. Most of the studies (n = 29) investigated caregivers of children with ASD, one study also included adolescent and adult patients, and two covered health providers. Most (51.0%-100%) of the caregivers/patients knew there was a genetic cause for ASD and 17.0% to 78.1% were aware of ASD genetic testing. However, they lacked full understanding of genetic testing. They acquired relevant and necessary information from physicians, the internet, ASD organizations, and other caregivers. Between 9.1% to 72.7% of caregivers in different studies were referred for genetic testing, and between 17.4% to 61.7% actually obtained genetic testing. Most caregivers agreed there are potential benefits following genetic testing, including benefits for children, families, and others. However, two studies compared perceived pre-test and post-test benefits with conflicting findings. Caregivers concerns included high costs, unhelpful results, negative influences (e.g., causing family conflicts, causing stress/risk/pain to children etc.) prevented some caregivers from using genetic testing. Nevertheless, 46.7% to 95.0% caregivers without previous genetic testing experience intended to obtain it in the future, and 50.5% to 59.6% of parents previously obtaining genetic testing would recommend it to other parents. In a single study of child and adolescent psychiatrists, 54.9% of respondents had ordered ASD genetic testing for their patients in the prior 12 mo, which was associated with greater knowledge of genetic testing. Most caregivers are willing to learn about and use genetic testing. However, the review showed their current knowledge is limited and usage rates varied widely in different studies.

To efficiently address the topics of research, influence, and reflexivity in qualitative research, we will investigate different vital aspects. This discussion will cover the role of the scholar, involving their biases, backgrounds, and beliefs, and how these aspects impact the research procedure. We will also investigate reflexivity, its significance in qualitative research, its definition, and its role in improving research trustworthiness and credibility. Ensuring transparency in the research process includes implementing systematic methods like peer debriefing, audit trails, and member checking. These methods expand the rigor and credibility of research outcomes and foster trustworthiness by including stakeholders, such as peers or respondents, in the critique and validation of the research procedure. By documenting decisions and actions as audit trails, validating interpretations as member checking, and seeking critical feedback from peers as peer debriefing, scholars can uphold ethical standards and contribute to advancing knowledge in their respective fields.

ABSTRACTBackground: More than 3.5 million people in the United States are diagnosed with autism spectrum disorder (ASD). Caring for children with ASD can be stressful and can be detrimental to the well-being of the caregivers (CGs). However, the adverse effects of caregiving on the well-being of CGs may be avoided with appropriate interventions. CGs of persons with ASD might benefit from a positive thinking training (PTT) intervention to help them cope with the stress of caregiving. However, the necessity, acceptability and feasibility for PTT in ASD CGs have not been studied.Objective: To examine the necessity, acceptability and feasibility of a six-week online PTT intervention designed to improve the well-being of the CGs.Design: Random assignment of ASD CGs to one of two conditions: (1) PTT online intervention or (2) Control group.Results: The mean score on the depressive cognition scale (DCS) was 20, indicating a high need of PTT to all enrolled CGs. High depressive cognitions in ASD CGs were associated with lower positive thinking (r = −.39; p <.001). Regarding acceptability, CGs indicated that the different strategies and references to real life were the most interesting parts of the intervention. Regarding feasibility, CGs mentioned that listening to the voice-over PowerPoint and visualization was the easiest part of the PTT.Conclusions: Examination of the fidelity and effectiveness of the PTT are the next steps in the refinement of this intervention.

Autism Spectrum Disorder (ASD) is a neurodevelopmental condition characterized by persistent deficits in social communication and interaction, along with restricted and repetitive patterns of behavior, interests, or activities. ASD encompasses a wide spectrum of clinical presentations and functional impairments, ranging from mild to severe. Despite its prevalence, the underlying physiopathological mechanisms of ASD remain largely unknown, resulting in a lack of effective targeted therapeutic interventions, contributing to significant financial and emotional burdens on affected families and the healthcare system. Emerging evidence suggests that dysfunction in the tetrahydrobiopterin (BH4) pathway may impair the activity of monoaminergic and nitric oxide (NO)-dependent neurons in individuals with ASD. To explore this potential mechanism, we conducted a systematic review to analyze such impairments to gather information on whether the off-label use of BH4 could represent a novel pharmacological approach for managing ASD. Following the PRISMA 2020 guidelines, we systematically reviewed the literature from four databases: PubMed, Virtual Health Library, Cochrane Library, and SciELO, from January 1967 to December 2021. The quality of the included studies was assessed using the Newcastle-Ottawa scale. The inclusion criteria for this systematic review focused on identifying articles published in English that contained the following keywords, used in various combinations: autism, ASD, autism spectrum disorder, BH4, tetrahydrobiopterin, neopterin, NO, nitric oxide. The analysis was performed between December 2020 and December 2021. The collected data demonstrated that BH4 metabolism was altered in individuals with ASD. Lower levels of BH4 were reported in biological samples from ASD-affected individuals compared to age- and sex-matched controls. Additionally, neopterin levels were elevated in plasma and urine, but decreased in cerebrospinal fluid, while nitric oxide levels were consistently reported to be higher across studies. Treatment with BH4 has shown potential in improving ASD-related symptoms. The reported increase in neopterin in biological fluids indicates inflammation, while the reduction in BH4 levels suggests a potential shift in its metabolic role. Specifically, BH4 may be diverted from its primary role in neurotransmitter synthesis to function as an antioxidant or to perpetuate inflammation through NO production. Given that BH4 is a critical cofactor in monoaminergic neurotransmission, its dysfunction highlights the molecule's therapeutic potential. BH4, already FDA-approved for other conditions, emerges as a promising off-label candidate to alleviate ASD symptomatology.

Autism Spectrum Disorders (ASD) are increasingly recognized in developing countries like India. However, little is known about the experiences of parents raising a child with ASD. This study aimed to describe the experiences of families in Goa, India with a view to understanding the unmet needs of families raising a child with ASD. Twenty in-depth interviews and nine focus group discussions were carried out with families of children with ASD and key community stakeholders such as special educators, teachers, and parents of typically developing children. This qualitative data was triangulated to explore the experiences, life impact, and unmet needs of raising a child with ASD. Key findings suggest that raising a child with ASD puts a tremendous strain on families due to competing commitments, often leading to initial social withdrawal with later reintegration into social networks. Second, the impact is multidimensional, involving the personal sphere but also extending into the wider community with negative experiences of discrimination. Third, parents actively respond to these challenges through a range of approaches with help from existing and new social support networks and health care providers. Fourth, professionals from the health, education, and religious sectors have a low awareness of the unique needs of families living with ASD which leads to a considerable economic and emotional burden on families. Finally, as a consequence of these experiences, several unmet needs can be identified, notably for supporting increasingly isolated families and the limited access to multidisciplinary evidence-based services for ASD. Autism Res 2012, 5: 190-200. © 2012 International Society for Autism Research, Wiley Periodicals, Inc.

Compared to non-immigrant families of children with autism spectrum disorders (ASD), immigrant families tend to experience more challenges securing an evaluation, obtaining a diagnosis, and accessing services for their child/children diagnosed with ASD. Several studies investigated the experiences of various groups of immigrant families. They found that the delays can be attributed to cultural differences in the way families interpret the meaning of ASD and their perceptions of the causes and treatment for ASD. Additionally, a lack of knowledge about ASD and fear of the stigma associated with ASD impacted immigrant parents' willingness to seek a diagnosis. However, few studies examined how Caribbean immigrants living in the United States experience a diagnosis of ASD for their child/children. This qualitative study explored Caribbean immigrant families' perceptions and experiences with ASD. A semi-structured, in-depth interview was used to collect data on families' experiences about symptoms, causes, and treatments of ASD, as well as their sources of support. The data were coded and analyzed using interpretative phenomenological analysis (IPA. Four themes were identified and discussed: A new world, emotional and physical burden caring for a child with ASD, attitudes about ASD in native cultures, and adapting to the new situation.