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ORIGINAL ARTICLE
Year : 2022  |  Volume : 66  |  Issue : 2  |  Page : 121-127  

Parenting a child with autism spectrum disorder: A qualitative study


1 Professor, Department of Pediatrics, Post Graduate Institute of Medical Education and Research, Chandigarh, India
2 Professor; Ex Senior Resident, Department of Pediatrics, Post Graduate Institute of Medical Education and Research, Chandigarh, India
3 Director-Principal of the Dr B R Ambedkar State Institute of Medical Sciences, Mohali, Punjab, India
4 Associate Professor, Department of Pediatrics, All India Institute of Medical Sciences, Jodhpur, Rajasthan, India

Date of Submission11-Sep-2021
Date of Decision16-Nov-2021
Date of Acceptance20-Nov-2021
Date of Web Publication12-Jul-2022

Correspondence Address:
Prahbhjot Malhi
Department of Pediatrics, Post Graduate Institute of Medical Education and Research, Sector 12, Chandigarh - 160 012
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/ijph.ijph_1779_21

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   Abstract 


Background: Research in India has seldom studied caregivers' perceptions, experiences, and needs for information and personal support after an autism spectrum disorder (ASD) diagnosis. Objectives: The objectives of the study were to understand the perceived barriers for obtaining a diagnosis and the perspectives and experiences of parents of children with autism. Materials and Methods: Parents with a diagnosed ASD child (within a year of diagnosis) in the 3–8 years range were recruited from the Pediatric Psychology and Neurodevelopmental Clinic from a tertiary care teaching hospital in North India. An interview guide elicited information about experiences regarding obtaining an ASD diagnosis, perceived barriers and facilitators, reactions to diagnosis, postdiagnostic family and community experiences, and stress experienced by parents. Qualitative responses were analyzed using thematic analysis. Participants were recruited till there was a saturation of themes. The ethics clearance was provided by the institutional review board. Results: Twenty-eight caregivers of children with ASD were recruited for the study. Overall, nine themes were identified from the qualitative analysis of the interviews: two before diagnosis (delayed help-seeking and experiences with healthcare), one at the time of diagnosis disclosure (heightened emotional response to diagnosis), and six themes after the diagnosis (increased stress, behavioral challenges, deterioration in family relationships, negative attitudes of the family, seeking support, and moving forward with hope for the future). Conclusions: There are several barriers and gaps in the autism-related available services in the country, and there is a need to provide inclusive, supportive, culturally sensitive, and family-centered model of care for parents raising children with ASD.

Keywords: Autism, lived experiences, parental stress, qualitative research


How to cite this article:
Malhi P, Shetty AR, Bharti B, Saini L. Parenting a child with autism spectrum disorder: A qualitative study. Indian J Public Health 2022;66:121-7

How to cite this URL:
Malhi P, Shetty AR, Bharti B, Saini L. Parenting a child with autism spectrum disorder: A qualitative study. Indian J Public Health [serial online] 2022 [cited 2022 Aug 18];66:121-7. Available from: https://www.ijph.in/text.asp?2022/66/2/121/350659




   Introduction Top


Autism is a lifelong neurodevelopmental disorder characterized by social communication deficits and repetitive patterns of behaviors and interests that generally manifest in early childhood.[1] Prevalence of autism spectrum disorders (ASD) is increasing globally with reported rates of about 1%–2%.[2] Autism is often difficult to diagnose and is associated with multiple consultations, inordinate delays in getting a formal diagnosis, and general dissatisfaction with the delivery of services.[3] In addition, a sizeable number of children with ASD have comorbidities including intellectual disability, behavioral challenges, psychiatric, and medical disorders, thereby increasing the caregiving demands on parents.[4] Parents are considered important stakeholders in the autism-related intervention services and are expected to be actively involved in the child's overall management that necessitates substantial time and commitment. Previous research indicates that the lengthy diagnostic process leads to increased family stress and delay in initiating interventions that are critical for an optimal long-term outcome.[5] Moreover, caregiving demands appear to lead to parental ill health, reduce the effectiveness of treatment, increase child-behavior problems, and financial burdens.[6]

Research in India has seldom studied caregivers' perceptions, experiences, and needs for information and personal support after an ASD diagnosis.[7] Indeed, research in this area is dominated by evidence from the western countries and neglected in the low-and middle-income countries (LMICs) leading to a substantial gap in the literature with regard to the specific issues associated with the care of a child with ASD. Recent research indicates that cultural variables influence family experiences of disability and western findings may not be able to guide policy and clinical practice in traditional and conservative nations such as India.[8],[9] This qualitative study attempts to redress this knowledge gap by understanding how parents of newly diagnosed children with autism navigate the complex health-care system, their potential needs, and psychological functioning in the context of their situation and lifeworld. It is hoped that understanding parents' evolving perceptions and concerns after diagnosis will raise awareness about the unmet psychosocial needs of families, detect barriers, and care gaps and help in guiding frontline professionals to better support families, modify clinical practice, develop family-focused interventions, and assist in policy formulation in India.


   Materials and Methods Top


An interview guide was used to elicit information about experiences regarding obtaining an ASD diagnosis, perceived barriers and facilitators, reactions to diagnosis, postdiagnostic family and community experiences, management constraints, and stress experienced by parents of recently diagnosed ASD children from a tertiary care centre in North India. A brief questionnaire was used to collect demographic information. Inclusion criteria were having a child with ASD in the age range of 3–8 years and being in the follow-up of the Pediatric Psychology and Neurodevelopmental Clinic for the past 1 year (within 3 months). The semi-structured guide was developed after reviewing related literature. [Table 1] presents an outline of the interview questions. The questions were used only as a broad guideline and the format and wording were used flexibly and modified as per the participants' unique context. Spontaneous follow-up questions were used to encourage elaboration of experiences and gather in-depth information.
Table 1: Broad outline of the semi-structured interview

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Interviews were conducted with 28 caregivers who described their lived experiences postdiagnosis and their journey thereafter. The interviews were conducted in Hindi at the clinic and were audiorecorded, transcribed, and analyzed. An inductive, descriptive thematic analysis was utilized to extract broad themes and subthemes from each of the interviews conducted. The themes and coding discrepancies were finalized after discussion and consensus among the research team members. Participants were recruited till there was a saturation of themes. Significant quotes were selected and used as illustrations to highlight the themes. Redundancy in the quotes, if any, was removed, and some additional words were added to improve the readability. The Institutional Review Board approved the study and parents provided written informed consent for participation and recording of the interview.


   Results Top


The ASD sample consisted of 24 boys and 4 girls (M = 4.5 years, SD = 1.7). Parents' age ranged from 23 to 44 years, and the majority belonged to upper-middle and upper socioeconomic status (71.4%), from urban areas (89.3%), with maternal education of graduate or higher (82%). [Table 2] shows the sociodemographic information of the sample.
Table 2: Demographic characteristics of the participants

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Parents discussed a range of issues including the arduous process of getting a diagnosis, their emotional responses to diagnosis disclosure, financial and relationship struggles, lack of emotional and financial support, significant challenges of parenting a child with autism, and coming to terms with autism. Overall, nine themes were identified from the qualitative analysis of the interviews: Two before the diagnosis (delayed help-seeking and experiences with healthcare), one at the time of diagnosis disclosure (heightened emotional response to diagnosis), and six themes after the diagnosis (increased stress, behavioral challenges, deterioration in family relationships, negative attitudes of the family, seeking support, and moving forward with hope for the future). These themes are elaborated in [Table 3] along with sample quotes.
Table 3: Sample quotes from identified themes

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Themes identified before the diagnosis

Parents recalled that they were unaware that some of the early signs of autism were aberrations of normal development. Delayed development, particularly in the language sector, was generally ignored or not considered severe enough to warrant medical attention. Parents who did raise concerns were either reassured or worries dismissed by the family elders. In the words of one mother: “My mother-in-law repeatedly told me that boys speak late and I should not bother wasting money by consulting doctors.” Some parents expressed frustration that the physicians were slow to respond to concerns and falsely reassured them by saying, “he will catch up,” “make sure he watches less TV,” and felt that “they should have listened to us and sent us to a better hospital in a big city.”

For most parents, behavioral abnormalities and developmental delays became a matter of concern around the time when the child started attending preschool. On few occasions, these signs were flagged by school teachers who directed parents to seek a consultation. Inadequate guidance regarding diagnostic and remedial services by local health functionaries inadvertently delayed efforts for timely consultations with specialists. Some caregivers regretfully recalled that their child at first had been wrongly diagnosed and they spent scarce resources getting unnecessary medical tests. This was associated with feelings of anger, regret, and guilt about time and money wasted searching for a diagnosis. Interviewed parents had limited knowledge of autism prior to diagnosis, though three families reported having watched a popular Indian television show, Aapki Antara, about the life of a girl with autism and how the family struggles to come to terms with living with a special child.

Themes identified during diagnosis disclosure: parents reported different types of emotions experienced while seeking out professional care and diagnostic process including disbelief, sadness, dread, shame, guilt, and hopelessness. More specifically, parents described their feelings as “a big dark cloud over my head,” “life has become a huge mountain, which is very hard to conquer,” “living through a nightmare,” “I am living in a pressure cooker,” and “tension, tension, and more tension! Oh god.” Parents who struggled with accepting the diagnosis of autism reported consulting multiple health professionals for confirmation. “My child was not like the child in the TV show, I was more than sure they (doctors) have made a mistake. Now I feel guilty.”

Themes identified after the diagnosis

Mothers of children with ASD reported greater caregiving burden and lower marital satisfaction after the diagnosis. Some had made professional sacrifices by withdrawing from workforce, foregoing career advancement, and shifting their career paths to manage the increasing demands of rearing a child with autism. One mother regretfully shared that “my job profile has changed and been downsized over the last few years. I've missed my arrears too.” Another mother wondered if she should quit her job and lamented “I really don't want to but I may have no option. I can't imagine my life without my job and my earnings. How will we manage if I lose my salary”? Expressions such as “being tired all the time,” “mentally drained of energy,” and “I did not sign up for this” illustrated feelings of frustration and being overwhelmed. The additional burden of imparting autism-related therapies seriously restricted parents' freedom, flexibility of choice of career path, and personal functioning.

Couples experienced a wide range of challenges that greatly affected their relationship within the family, particularly the spouse: “we are always arguing over trivial matters,” and 'his (husband) lack of involvement is so annoying.” Partners accused each other of not caring, sharing childcare duties, and even attributed the child's disability to poor parenting. Some mothers reported being threatened with divorce by their husband's extended family as they held them responsible for the child's disability. A few respondents felt conflicted that they were neglecting the needs of other family members as their daily lives revolved around supporting the myriad needs of the ASD child. Emotional distancing with spouse was regretfully reported by one mother: “we used to be so close but now we barely get time to talk and bond, so many tasks need my attention all the time.”

At times, the extended family members disagreed about treatment decisions and forced parents to seek out traditional healers and rely on prayers and religious rituals for miracle cures. Parents who felt unsupported either by their spouse or extended family members reported feeling relatively more conflicted and stressed: “there is so much that I have to bear by myself.” The knowledge that the disorder was chronic and long-term contributed to an intense sense of anxiety regarding the increased financial burden and they bemoaned that it was an “endless battle,” and wondered “when will this end?”

Many families endorsed that they were stigmatized and marginalized within their communities due to prevalent traditional and cultural beliefs that equate disability with an ill-omen and punishment for transgressions in a previous life: “perhaps this was the lesson God wanted to teach us,” while others wondered “what have I done to deserve this?” Restrictions in social engagements were a common theme and as one mother regretfully said “it's been ages since we visited the temple, shopped at a mall, or attended a wedding together as a family.” A substantial proportion of parents reported that the most challenging feature of their parenting experience was managing their child's deviant behaviors in public places that caused acute embarrassment and rejection by the community members: “people don't want to invite us or socialize with us,” and “they avoid us like a contagion.” Direct criticisms of the child's behavior and blaming parents for not being able to control their child were also experienced. Parents perceived that their child's special needs had contributed toward the devaluation of their social identity and tried to keep their child concealed from the community: “better to keep him home and avoid others.” In addition, families encountered negative social stereotypes and rejection by mainstream schools in admissions and opportunities for inclusive education. In describing their experiences with school teachers' parents complained, for example: “they (school teachers) are heartless, do they not know that all children are different and all cannot be brilliant,” “no school wants to enroll my child,” and “when the school authorities asked us to enroll him in a different school, we felt so devastated and rejected.”

Caregivers worried about the child's future well-being in view of the few available educational services for children with autism, especially in the rural areas, and limited government-sponsored respite facilities. Seeking out external supports such as discussing with families who had faced similar tribulations and equipping self with autism-related information from books and regular consultations with professionals helped families cope. Some couples felt that having a shared purpose in life gave them the fortitude to face the future and strengthened the marital bond “we are now thinking as a team, with a common goal that is the future of our child.”

The importance of coming to terms with the child's disorder was emphasized as an imperative part of the learning process. One mother explained “one can't keep feeling sorry for oneself …we have to move forward.” A few parents expressed a sense of pride at making unconditional compromises and hoped that “our sacrifices will not go in vain and ensure him (the child) a brighter tomorrow.” On an optimistic note, parents proudly shared the gradual improvement in their child's functioning and felt that their persistent efforts had paid rich dividends. The need for external validation of their resilience in the face of adversity was also a strong underlying theme: “I have not fared so badly after all.” Some parents had strong religious beliefs and expressed utmost faith in God who would guide and see them through these testing times. Relinquishing control to a greater power helped families in eventually accepting the disorder and moving forward with a sense of personal growth and “humility in our newfound spiritual strength.”


   Discussion Top


The present study extends the knowledge base regarding perspectives and lived experiences of Indian parents raising a child with autism. The results indicated that families struggled with a wide range of emotions and challenges during the diagnostic process and postdiagnosis. Parents reported that navigating the complex health-care system was emotionally and physically draining and feelings of helplessness and alienation toward the system were common. These findings are generally consistent with studies reported in the wider literature that parents experience mixed feelings ranging from disbelief, distress, to relief to the disclosure of diagnosis.[3],[10] Indeed, positive parent–physician experiences during the diagnostic process can have an all-encompassing influence on parents' perceptions and future relationships with their child and other health providers.[11] Moreover, families' experiences at the time of the diagnosis predict future adaptation to autism.[12] It seems especially important that health providers reconsider their communication and information sharing style and provide more supportive care while disclosing diagnosis. Preparing parents for possible reactions to a diagnosis may be a useful strategy for managing their emotional reactions at this critical juncture in life.[13]

Delay in health-seeking behaviors has been reported in previous studies from Asian countries as families often lack information about development and atypical behaviors are generally dismissed as normative variations that the child would eventually outgrow.[7],[14] Asian cultures may not consider early language and social deficits as a manifestation of a disorder and may be less likely to notice early aberrations in social development.[7],[14],[15] In such contexts, it becomes imperative that clinicians perform developmental surveillance and autism-specific screening during routine health visits for early detection and timely interventions.[16]

Some parents reported consulting traditional healers and spiritual leaders to invoke blessings or seek alternative treatments for their autistic children before consulting physicians. Turning to religious leaders and offering prayers is not uncommon in traditional societies.[7],[8],[14] Cultural beliefs, faith in local traditional healers, lack of partner support, and resistance by family elders and family support to consult specialists all contribute to delayed help seeking. There is a need to explore the local beliefs and social norms that dictate a family's response to developmental disabilities in general and autism in particular and the extent these differ across various cultural settings.

Many parents reported a high amount of postdiagnosis stress, poorer parental functioning, greater marital conflict, family socialization difficulties, and feelings of inadequacy. Parental stress was primarily related to the burden of childcare, difficulty in managing family relationships, limited support systems, financial concerns, and stigma associated with childhood disability. Previous studies have reported that the caregiving demands exacerbate stress and increase the likelihood of dysfunctional interpersonal interactions, maladaptive parenting behaviors, and render parent-mediated interventions less effective.[17],[18] Indeed, there are reciprocal effects of parenting stress on acute externalizing behavior problems and poorer child outcomes among ASD children.[19] Interestingly, parenting stress is more prevalent in conservative, traditional, and collectivistic cultures.[8],[20] These findings underscore the importance of creating social support networks and investing in respite care for families burdened with raising children with disabilities. Programs that provide postdiagnostic supportive social networks for families and community activities for children improve children's social and communication skills and reduce parental stress by empowering and addressing their unmet emotional and social needs.[21]

Despite the significant challenges, some respondents reported that parenting a child with autism was also enriching as it provided them with an opportunity for developing spirituality and a new life vision.[22] These findings emphasize the need for primary care providers to understand that caregiver's acceptance and readiness of optimal engagement with the care of their ASD child develops progressively and they may use religion and spirituality to help families to accept and work through their challenges.[23] Providing user-friendly, reliable, and relevant information through support brochures and videos may be an effective strategy in augmenting traditional counseling services. A recently published meta-analysis highlights the important role of enhancing formal and informal social relationships and support services to improve the mental health of parents with ASD children.[24] The need for health functionaries to work in partnership with traditional authority religious and community leaders and structures is imperative for implementing public educational initiatives and countering discrimination against childhood disabilities. These initiatives need to be culturally and locally driven to be tenable within the different settings, in which they have to be implemented.

Stigmatizing attitudes of community members were generally attributed to the socially inappropriate behavior of ASD children, which was ascribed to parent's inability to manage their child's disruptive and odd behaviors in public places. Research indicates that stigma is universally experienced by caregivers of children with autism in LMICs and internalizing negative beliefs, also referred to as “affiliate stigma” affects caregivers subjective well-being and quality of life,[25],[26] especially in conservative cultures where socially devalued stereotypes of disability are widespread.[27] Brief “stigma protection” interventions that utilize techniques such as community education, screening of movies, debates, and inclusive sports can help in countering discrimination at the community level.[28] Psychosocial stigma protection interventions that employ cognitive restructuring and compassion-focused strategies are beneficial to improve the functioning of caregivers.[29] In a recently published literature review of 25 qualitative and quantitative studies on stigma among parents of children with autism, Liao et al. concluded that the majority of the research is confined to the western world and evidence from resource-poor countries is lacking.[30] The current study adds to the literature by demonstrating that bias against children with autism is acutely perceived by Indian parents.

The study has a few limitations that need to be kept in mind. The sample was relatively small, mostly comprised mothers, families with boys with autism, and relatively homogenous with respect to education and socioeconomic status. Moreover, the families were receiving services in a tertiary care specialized clinic and hence were not representative of families of children with ASD in the community. Future studies should recruit a more varied sample and elicit views of families with autistic girls and fathers as they are underrepresented in the literature. The main strength of the study is that it provides detailed, specific experiences of families, and direct quotes to support presented themes and constructs. Moreover, the current research identified important gaps in the autism-related available services in the country and makes a strong case for the provision of inclusive, supportive, culturally sensitive, and family-centered model of care for parents raising children with ASD.

Physicians can play a salient role in helping parents navigate the complex health-care system, weigh the pros and cons of various intervention strategies, and make decisions that best suit their individual needs in the immediate and long-term future. Clinical implications of the study highlight the need for more family-centred physician–parent communication that is strengths-based, sensitive to families' emotional needs, and individualized to a family's unique context. Support to families should be positive and evidence based that takes into account the perspectives of parents so that program planners can take a more balanced view of the potential challenges and future of their ASD child.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
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