Parents of autistic children reported heavy strain and relied on coping rituals

A small Nepal-based qualitative study maps the emotional, social, and financial load—and how parents try to stay afloat.

Parents raising children with autism in Nepal described intense psychological strain, physical exhaustion, social isolation, career disruption, and financial pressure. They also reported coping through crying, religious music (bhajans), meditation, and positive thinking, with some reframing their experience as a chance to help others. These findings come from the research paper Experience and coping strategies of parents of children with autism: A qualitative study.

Quick summary

What the study found: Across interviews, parents reported multi-domain impacts—psychological, physical, social, career, and financial—and described both emotion-focused and meaning-focused coping strategies.
Why it matters: Support for families needs to address more than clinical care for the child; caregiver well-being, stigma reduction, and practical resource access are central.
What to be careful about: The study is qualitative with nine parents recruited from a pediatric outpatient setting in Nepal, so it captures lived experience but does not estimate prevalence or predict outcomes.

What was found

This study explored parents’ lived experiences of raising a child with autism spectrum disorder (ASD) in Nepal using in-depth, semi-structured interviews. Five major themes emerged: psychological, physical, social, career, and financial impacts. Parents described an emotional burden marked by hope mixed with uncertainty and guilt; day-to-day fatigue, sleep deprivation, and safety concerns; isolation linked with stigma and family sacrifices; career disruption including job loss and reduced opportunities; and financial strain due to high costs and limited resources.

The study also identified coping strategies. Parents reported crying, listening to religious music (bhajans), meditating, and practicing positive thinking. Some parents described reframing their experience as an opportunity to help others, suggesting that meaning-making was part of how they endured ongoing stress.

Although families reported early diagnosis and continued care, they still experienced limited resources and persistent stigma. Challenges were described as especially evident among mothers, who were the majority of caregivers in this sample. The overall picture is not a single “problem” but a stack of pressures that accumulate across mind, body, relationships, work, and money.

What it means

The clearest implication is that caregiver strain is multi-layered. When stressors hit several life domains at once—sleep, finances, employment, social connection—coping becomes less about “better attitude” and more about survival. A family can be committed to ongoing care and still feel worn down by the surrounding conditions.

The coping strategies described fall into a few widely recognized buckets in psychology, though these categories are background, not results from this study. Crying can function as emotional release; religious music and meditation can downshift physiological arousal and provide comfort through routine and belief; positive thinking can act as cognitive reappraisal, helping someone keep functioning when problems are not immediately solvable. Reframing the experience as a way to help others resembles meaning-focused coping, which can protect identity and purpose during chronic stress.

At the same time, coping is not the same as support. If stigma keeps families isolated, and if resources remain limited, the burden stays high no matter how resilient parents are. The study’s themes point toward a need to treat caregiver well-being as a core part of autism-related services, not a side issue.

Where it fits

This research paper adds detail to an often-overlooked part of autism care: what parents actually carry, day after day, from their own perspective. The study emphasizes that autism-related challenges are not confined to a child’s symptoms or therapy schedule; they ripple into sleep, safety vigilance, family relationships, social standing, and the ability to earn a living.

It also highlights how stigma can be an active stressor, not merely an unpleasant attitude in the background. When stigma leads to isolation and family sacrifices, it reduces informal support at the exact moment caregivers need it most. In practical terms, stigma becomes a barrier to respite, shared caregiving, and community participation.

Finally, the findings align with a broader, established idea in caregiving psychology: chronic caregiving stress tends to produce both grief-like feelings and adaptation over time. The abstract notes guilt, uncertainty, and hope existing together, which is consistent with the reality that caregivers can feel love and determination while also feeling depleted and worried.

How to use it

If you work with families of autistic children—clinicians, educators, community health workers—the most actionable takeaway is to assess needs across domains, not just child-focused goals. Ask directly about sleep and fatigue, safety concerns, isolation, and financial strain. People often mention these issues only when invited, especially in settings where they expect the focus to stay on the child.

Support planning can be made more realistic by matching interventions to the type of stress named in this study. For physical exhaustion and sleep deprivation, prioritize respite and shared caregiving plans when possible, even if modest. For social isolation and stigma, community awareness efforts matter, but so do smaller steps like connecting caregivers to peer groups or trusted families, which can reduce isolation quickly.

When parents already use coping rituals—religious music, meditation, positive thinking—treat them as assets rather than distractions, as long as they do not replace needed services. Encourage routines that stabilize the day and reduce overwhelm, because consistent small practices often work better than big one-time advice. Where parents show meaning-making or a desire to help others, offering structured peer-support roles can channel that energy while also strengthening community capacity.

For employers, educators, and policymakers, the career and financial themes are a signal to reduce friction points. Flexible scheduling, caregiver leave, and predictable school supports can protect employment. When services are scarce, simplifying access and reducing costs can change the entire stress profile of a household.

Limits & what we still don’t know

The study interviewed nine parents selected purposively from a pediatric outpatient department in Nepal, so the findings are rich in detail but not designed to estimate how common each experience is. We do not know from the abstract how experiences differ by child age, autism support needs, family income, or rural versus urban context. The study also cannot tell us which coping strategies are most effective over time, only that parents reported using them.

Because the data come from interviews, the results reflect what participants chose to share and how they made sense of their lives at that moment. That is a strength for understanding lived experience, but it does not substitute for service evaluations or longitudinal tracking. We also cannot infer that early diagnosis or continued care causes better outcomes here; the abstract only notes that challenges persisted despite those factors.

The open question is what changes would reduce the stacked burden most efficiently: expanded services, targeted financial support, anti-stigma programs, caregiver mental health care, or coordinated packages that combine these. The study points toward “family-centered support” and “community awareness,” but it does not test specific solutions.

Closing takeaway

This study shows parents of children with ASD in Nepal describing a wide, interlocking burden: emotional pain and guilt, fatigue and sleep loss, stigma-driven isolation, career disruption, and high costs amid limited resources. Parents also described coping through simple, repeatable practices—crying, bhajans, meditation, and positive thinking—and, for some, finding meaning in helping others. The clearest lesson is to build autism support around the whole family system, because the caregiver’s load is not peripheral; it is part of the condition’s real-world impact.

Data in this article is provided by PLOS.

Tagged Age groups, Autism, Autism spectrum disorder, Careers, Children, Developmental neuroscience, Developmental psychology, Economics, Emotions, Employment, Families, Finance, Human families, Labor economics, Medical conditions, Mothers, Neurodevelopmental disorders, Neurology, Neuroscience, Pervasive developmental disorders, Population groupings, Sociology