Spirituality in Latino families of children with autism spectrum disorder

Research on Latino parents of children with intellectual and developmental disabilities (IDD) suggests that these parents often use spirituality to conceptualize and to cope with their child’s diagnosis. However, there are no studies that examine religion among Latino parents of children with autism spectrum disorders (ASD). The current study explores how Latino parents of children with ASD incorporate spirituality into their conceptualizations of their child’s disability. In the current study, 34 Latina mothers of children with ASD were interviewed about autism-related services, family characteristics, and cultural beliefs including spiritual beliefs. Thematic analysis of the transcribed interview data relating to spiritual beliefs was conducted for the present study. Most mothers endorsed beliefs that their child with a disability was a message from God. Within this theme, mothers reported beliefs that their child was a blessing from God, a test from God, a sign from God or that the parent was special. Other parents believed that having a child with a disability was not an act of God, but related to biomedical factors, and another group of parents was unsure about the spiritual meaning of their child with a disability. Lastly, some mothers reported that their larger cultural group believed that having a child with a disability was a punishment or a negative sign from God but they markedly rejected that conception. These findings suggest that providers working with Latino families of children with ASD should acknowledge the importance of spirituality for these families.     

Factors That May Influence Parent Treatment Decision Making for Young Children with Autism Spectrum Disorder

ABSTRACT

The number of interventions available for children with autism spectrum disorder (ASD) has expanded greatly in recent years, although relatively little is known about the factors that influence family caregivers as they make treatment decisions for their children. This study involved a statewide survey of parents of young children with ASD to examine the relative weights of the factors that influenced their treatment decisions. Results suggested that caregivers rely on their own intuition for much decision making, although selected professionals are also influential. Implications for professionals working with children with ASD and their families are discussed.     

The Impact of Autism Spectrum Disorders on the Family: A Qualitative Study of Mothers’ Perspectives

An estimated 730,000 Americans younger than age 21 in the United States have an autism spectrum disorder (ASD), and current trends predict 36,500 new diagnoses each year. Due to this rapid increase in ASD diagnoses, it is critical to understand the impact having a child with ASD has on a family's daily functioning to better coordinate services and design effective interventions. Qualitative semistructured interviews with eight mothers were conducted, and four primary themes emerged identifying primarily negative impacts of having a child with ASD. Implications for practice and future research are addressed to inform the development of best practices for families.     

Communicating with children with autism spectrum disorder and their families: a practical introduction

Impaired communication and social interaction are symptoms central to autism spectrum disorder (ASD). Children or young people with ASD have varied intellectual ability, learning difficulty, and needs. For caregivers and health care professionals providing care to children with ASD, many challenges are encountered in everyday conversations. Enhanced knowledge of the spectrum and understanding the child or young person with ASD may improve conversation and social experiences. This article provides a practical introduction for health professionals seeking to improve their interaction with young people with ASD. Fictional vignettes, in which children with ASD are seeking care and support are presented, followed by discussion on communicating with children with ASD.     

Discursively Constructing a Family Identity After an Autism Diagnosis: Trials,Tribulations, and Triumphs

The present study addressed the question: How are families communicating to construct a family identity in the face of a child’s autism diagnosis? Interviews with 19 parents of children, teens, and adults with mild, moderate, and severe autism highlighted the discursive construction of family identity. Findings reveal that families construct an internal family identity that is marked by unified usage of the name “autism,” emotive and mundane daily discussions, narratives that serve functional purposes, and normal/structured rituals. Externally, families communicate about autism to outsiders to help others understand, to educate others about autism, to show their loyalty and protection for their family, and to highlight their family’s normalcy. These findings illustrate that the discourse-dependent practices are useful not just for constructing membership in families that differ structurally from societal expectations, but also for constructing identity in that face of unique family functioning resulting from a chronic health concern.     

Serving the needs of immigrant families of children with autism

The growing influx of immigrant families into the USA necessitates an understanding of how these families manage mental health disorders. Few studies have documented the ways in which autism spectrum disorders (ASD) are understood across different immigrant groups. This lack of knowledge creates barriers for practitioners who are encountering immigrant families in their practice. The present paper provides a conceptual framework of how cultural values and beliefs shape the way diagnosis, etiology and treatment of ASD is perceived by both immigrant families and western practitioners and how differences in perspectives may create obstacles in treatment planning. A review of the literature describing practical and cultural barriers to mental health access and research among immigrant populations is also presented. Finally, recommendations are offered to practitioners, families and individuals with ASD to aid in increasing understanding and collaboration among these populations when designing and implementing treatment interventions.     

Effects of autism spectrum disorder on parental employment in the United States: evidence from the National Health Interview Survey

Using results of the US National Health Interview Survey (US-NHIS) for the years 1998–2013 we investigated the impact of having a child with autism spectrum disorder (ASD) on parents’ work behavior. After controlling for numerous background characteristics, we found that having a child with ASD lowered the number of hours of market work per week and the number of months of market work in the previous year for mothers. For fathers, having a child with ASD also reduced the number of hours of market work per week and the number of months of market work in the previous year. However, the magnitude of the effects were smaller for fathers than for mothers, and more sensitive depending on whether the estimates were derived from a linear regression model or propensity score models. Some evidence was also found that the impact of having a child with ASD on parents’ market work depended on whether or not the child with ASD also had an intellectual disability, the parent’s education level, immigration status, and parent race/ethnicity.     

From symptom recognition to services: how South Asian Muslim immigrant families navigate autism

This study examined the experiences of three South Asian Muslim immigrant families who have a young child with autism. It describes the early period of their child’s disability as the families encountered four critical issues in their lives: a complex disability, the culturally diverse conceptualizations of the disability, family‐professional dynamics in cross‐cultural encounters and the search for appropriate services. Analyses were based on interviews with parents, supplemented by 17 months of participant‐observation in homes and community. Parents narrated their experiences beginning with symptom recognition through help seeking, diagnosis and subsequent service provision. Results suggest that for these families the challenging process of diagnosing and ameliorating autism is complicated by their unique positioning within and between diverse meaning systems. Challenges include American health and education professionals’ misunderstandings of their family organization and linguistic practices, and difficulties in cross‐cultural communication with professionals. Implications for professionals are discussed.     

Marriage and family therapists working with couples who have children with autism

Current research about families and couples who have children with autism is discussed using the Double ABCX model as a guide. A case study is presented along with recommendations for therapists who work with couples who have children with autism. Marriage and family therapists are encouraged to use the Double ABCX model as both an assessment tool as well as for intervention. More research and effective therapists in this area are needed in order to keep up with the rising rates of families that include children diagnosed with autism.     

Companion animals in families of children with autism spectrum disorder: Lessons learned from caregivers.

Companion animals (i.e., pets) have been increasingly recognized for the roles they play in families, including those with children with Autism Spectrum Disorder (ASD). This cross-sectional study explored the unique functions of companion animals within families with a child with ASD. Phenomenology was used to analyze the responses of participants (N = 338) who responded to a survey offered through the Interactive Autism Network. The study initially focused on dogs; however, the analysis was forced to expand to other species due to the data provided by participants. Seven major themes emerged: bonding and benefits, learning opportunities, barriers, grief, fit (match of family characteristics with those of the companion animal), safety, and alternative animals. Successful fit between companion animals and families was often described as necessary for beneficial functions. Barriers included necessary cost and time, as well as required supervision of interactions to enhance safety of the children and animals.     

Childhood Autism and Proactive Family Coping: Intergenerational Perspectives

This article considers the value of intergenerational and specifically, grandparental support, in the management of adaptive tasks posed by raising a young child with autism. The tasks addressed range from accessing early intervention to enhancing family social functioning. We note unique social, financial, and health-related stressors faced by families of children with autism. We outline an innovative, stress theory-based framework, the Autism Proactive Intergenerational Adaptation (APIA) Model, which delineates the role of grandparents in contributing to family adaptation to the stresses of raising a child with autism. We focus on proactive family coping strategies in building resilience and ameliorating the adverse impact of stressors on quality of life (QOL) for individual family members and for the family unit. We discuss barriers and facilitators of intergenerational alliances involving grandparental participation and support.     

Financial Issues Associated with Having a Child with Autism

Data from the Family Experiences with Autism Survey are used to identify factors associated with financial problems in families that have a child with autism. Likelihood of financial problems was positively associated with use of medical interventions, having unreimbursed medical or therapy expenses, and having relatively lower income. Use of speech and language therapy was negatively associated with likelihood of financial problems. Many survey respondents forfeited future financial security and even experienced bankruptcy to provide needed therapy for a child with autism. Specific ways that financial advisors can help families that have a child with autism are outlined.

Insight into Informant Discrepancies Regarding Psychosexual Functioning of Adolescents with and without Autism Spectrum Disorder

The private nature of psychosexual functioning leads adolescents and their parents to have different perspectives, which highlights studying parent–child informant discrepancies in this domain. We investigated informant discrepancy in psychosexual functioning, using the self‐report and parent report versions of the Teen Transition Inventory (TTI), of adolescents with autism spectrum disorder (ASD; 136 parent–child dyads) compared to adolescents from the general population (GP; 70 parent–child dyads). Significantly larger informant discrepancies exist in ASD dyads than GP dyads in most domains of psychosexual functioning, except for Body image, Sexual behavior, and Confidence in the future. It is important to use and pay attention to both informants, as discrepancies are relevant for both research and clinical practice regarding psychosexual functioning.     

THE EFFECTIVENESS OF FAMILY THERAPIES FOR SELECTED BEHAVIORAL DISORDERS OF CHILDHOOD

This article reviews the scientific evidence for the effectiveness of family-based aproaches in the treatment of selected childhood behavioral disorders. Although limitations certainly exist, family interventions have consitently improved child and, in some cases, parent functioning in families with children presenting with conduct disorder (CD) and autism. Parents and other family members also directly benefit from child-focused interventions, gaining in knowledge, child management skills, and attitudinal improvements. Longh-term follow-ups indicate that CD and autistic children achieved lasting gains. Similarly, the research on attention-deficit/hyperactivity disorder (ADHD) indicates that parent training improves child noncompliance and aggression yet does not consistently affect core symptoms of ADHD. There is no evidence that adding short-term family interventions improves ADHD child functioning beyond improvements from the use of psychostimulant medications. Some tentative support for family involvement in the treatment of childhood anxieties and fears is reviewed, but clear conclusions await future investigations. Finally, several methodological limitations and needed areas of research are discussed.     

Barriers and facilitators of the transition to adulthood for foster youth with autism spectrum disorder: Perspectives of service providers in Illinois

The lack of established and well-evaluated models of coordination between child welfare agencies and other public institutions presents lingering challenges to preparing foster youth to make the transition to adulthood. This may be particularly true for foster youth with developmental disabilities who must exit child welfare systems and enter into adult service systems, if eligible. The qualitative study we present explores the barriers and facilitators of the transition to adult service systems from the perspectives of service providers. Due to the rising prevalence of autism spectrum disorder (ASD) in the general population, focus groups were specifically conducted to better understand the transition of foster youth with ASD. Barriers included perceptions of two separate systems and abrupt transitions; a lack of training, identification, and tracking of autism; and confusion about services and funding. Facilitators included persistence and professional relationship building, and consistent communication and information sharing. Implications for improving the transition to adult service systems are discussed.     

Appreciating the world of autism through the lens of video interaction guidance: an exploration of a parent’s perceptions,experiences and emerging narratives on autism

This study seeks to identify understandings and narratives around autism spectrum disorder (ASD) through the application of video interaction guidance (VIG). In adopting a social constructionist approach, the case study used a person-centred model to explore a parent’s experiences and emerging narratives of ASD through the lens of VIG. Findings of the current study suggest that VIG offers an effective tool for in-depth exploration of complex, multi-storied understandings of ASD and the perceived parental role. The intervention was perceived to promote greater awareness of the child’s communication skills, beyond the ‘common’ understandings of ASD, by providing a novel outsider perspective on interactions. The intervention also promoted parental efficacy through recognition of parenting skills in supporting the development of strength-based narratives. VIG was seen to provide a platform for an exploration of existing narratives and the construction of new, preferred realities.     

“At a moment,you could collapse”: Raising children with autism in the West Bank

The current qualitative study examined knowledge, attitudes, burdens and coping strategies related to caring for a child with an autism spectrum disorder (ASD) in the West Bank. Based on a sample of 24 Palestinian parents, the study found that parents struggled with financial stressors, child behavioral and medical challenges, and depression. Few parents were aware of ASDs prior to their children's diagnoses. Furthermore, discrimination and stigma from extended family members and the larger community intensified parents' feelings of shame and experiences of social isolation. While some parents coped by withdrawing from the community or denying the diagnosis, others aimed to increase social interactions and access information. Religious coping was found to be partly adaptive for some of the participants. The study underscored the vital need to increase community awareness of ASDs and increase social support for parents in the West Bank.     

Contact with birth family in adoptive families headed by lesbian,gay male,and heterosexual parents

In this study, we examined the extent and type of contact with birth family in adoptive families headed by sexual minority and heterosexual parents prior to or at the time of placement, following placement, and currently. Data were drawn from the Modern Adoptive Families project, a nationwide, non-random survey of adoptive parents' beliefs and experiences that was conducted from 2012 to 2013. The current sample consisted of 671 families headed by heterosexual parents, 111 families headed by lesbian parents, and 98 families headed by gay male parents whose oldest adopted child was less than 18 years old and who was placed domestically either from the public child welfare system or from a private agency or independent adoption facilitator. For child welfare adoptions, sexual minority parents reported higher levels of contact and tended to have more positive relationships with birth family compared to heterosexual parents. Fewer differences by family type were found for private agency adoptions. Higher rates of contact and more positive relationships with birth family were found for private domestic placements compared to those from foster care. Secondary analyses suggest that family demographic and adoption placement differences between sexual minority- and heterosexual-parent families do not account for family type differences in contact with birth family. Policy and practice implications are discussed.     

‘My Parents told us that they will always Treat my Brother Differently Because he is Autistic’ – Are Siblings of Autistic Children the Forgotten Ones?

Autism spectrum disorder (ASD) does not only affect the child alone, but the family unit as well. This qualitative study explored the impacts of ASD on the relationship between parents and their neuro-typical children and how the neuro-typical children cope with the impacts of having an autistic sibling in the family. Utilising principles of the social relations theory, five Singaporean families (n = 10) consisting of five mothers and five neuro-typical children were interviewed. Both the mothers and the neuro-typical children were seen to be equal agents in influencing the interactions with each other, and contributed in maintaining the close relationship through various strategies. Findings revealed that having an autistic child in the family imposed certain constraints and additional responsibilities for the family members. Despite so, the neuro-typical children coped well with such constraints. The in-depth data highlight the value of considering both the agency of mothers and the neuro-typical children and how they bidirectionally influence each other while sharing the caregiving roles for the autistic child in the family. It is strongly recommended for practitioners to incorporate elements of child's agency when expanding their scope of psychosocial intervention work with the neuro-typical children.     

Stress and Marital Satisfaction of Parents to Children Diagnosed With Autism

This investigation expanded on previous research conducted among parents caring for a child who is diagnosed with an autism spectrum disorder (ASD). An online web survey was used to collect data from 253 parents caring for a child with a diagnosis of ASD. Both parents reported elevated levels of parental stress associated with caring for the child on the spectrum. Lower levels of marital satisfaction were found in both parents. About 13% of the parents met the diagnostic criteria for major depressive disorder, and about 15% of the parents met the diagnostic criteria for generalized anxiety disorder. Although the majority of the sample was female (94%), significant differences were found between males and females in relation to meeting the diagnostic criteria for major depressive disorder and for generalized anxiety disorder. Higher levels of stress were associated with higher number of generalized anxiety disorder and major depressive disorder symptoms. Findings from this study indicate how vulnerable parents, especially mothers, are in relation to caring to a child diagnosed with ASD.