Abstract: Background: Autism Spectrum Disorder (ASD) poses significant challenges for individuals and families globally, yet prevalence data and diagnostic tools, particularly in regions like India, are lacking. Objective: This paper explores the multifaceted impacts of ASD on individuals and families, focusing on challenges faced by non autistic siblings , parental stress, marital dynamics, and financial […]
Background: Autism Spectrum Disorder (ASD) poses significant challenges for individuals and families globally, yet prevalence data and diagnostic tools, particularly in regions like India, are lacking.
Objective: This paper explores the multifaceted impacts of ASD on individuals and families, focusing on challenges faced by non autistic siblings , parental stress, marital dynamics, and financial strain.
Methods: Literature review and analysis of empirical studies examining the impacts of ASD on parental stress, marital dynamics, and financial strain were conducted.
Results: Parents, particularly mothers, experience heightened stress levels upon diagnosis of ASD, impacting marital satisfaction, especially when children exhibit additional behavioral challenges. Financial strain is common, often leading to reduced work hours or unemployment among parents.
Conclusion: Comprehensive societal support, including improved accessibility to services and financial assistance, is essential for addressing the diverse impacts of ASD and fostering inclusive and supportive environments for affected individuals and families.
Autism Spectrum Disorder (ASD) encompasses conditions marked by varying degrees of impaired social behavior, communication, language, and specific repetitive interests and activities. While global estimates indicate that 0.76% of children had ASD in 2010, there is a lack of evidence in low- and middle-income countries. In India, the number of children affected by ASD surged from 2 million in 2008 to 10 million in 2013. Researchers suggest that the increasing number of autism cases might be linked, at least partially, to the increased awareness and advocacy for autism that it’s possible autism has always been prevalent, but we’re now detecting it more accurately because of better screening methods.However, some researchers propose that environmental factors and genetics could also play a role in the rising autism rates. Experts have different views on this issue, but personally, I think it’s likely a combination of all of these factors.(1)Challenges in obtaining precise numbers arise from hospital-based studies, the lack of standardized diagnostic tools, and delayed diagnoses. Despite over 20 identified risk factors for ASD, empirical evidence on parental awareness, challenges, and coping strategies in India is insufficient.
What is autism spectrum disorder:
Autism, also known as autism spectrum disorder (ASD) is a neurological and developmental disorder that affects how people interact with others, communicate, learn, and behave(2), it encompasses a diverse range of developmental brain conditions. Approximately 1 in 100 children is affected by autism. Although characteristics may be noticeable in early childhood, diagnosis often occurs later. The abilities and needs of individuals with autism vary, with some achieving independence while others require lifelong care and support due to severe disabilities. Evidence-based psychosocial interventions can enhance communication and social skills, positively impacting the well-being and quality of life for both autistic individuals and their caregivers. Current scientific evidence suggests that various factors, both environmental and genetic, may contribute to a child’s likelihood of having autism. Effective care for those with autism necessitates broader community and societal actions to enhance accessibility, inclusivity, and support.(3)
Challenges faced by Autistic children:
People with ASD, or autism, may do things, talk, interact, and learn differently than most others. They don’t usually look different from everyone else. Some can talk really well, while others may not talk at all. Some need a lot of help every day, while others can do things on their own. ASD starts before a person turns 3 and can last their whole life, although things might get better over time. Some kids show signs of ASD when they’re around 1 year old, while others may show signs later. Some kids with ASD learn new things until they’re about 18 to 24 months old, and then they might stop or lose some of what they learned. When kids with ASD grow up, they might find it hard to make and keep friends, talk to others, or understand what’s expected at school or work. They could also have other issues like feeling anxious, sad, or finding it hard to pay attention, which happens more to people with ASD than those without.(4)
Role of care givers in the life of autistic child:
While the old way of classifying ASD might have seemed straightforward, the subtle differences between categories led to confusion and interpretation issues. To address this, ASD is now divided into three levels, indicating the level of support a person might need are as follows(5)
ASD Level 1 is the lowest classification, where individuals need some support for challenges like social interaction and planning skills.
ASD Level 2 falls in the middle, with individuals requiring substantial support, and their difficulties, such as communication issues and repetitive behaviors, are more noticeable.
ASD Level 3, which demands significant support. Individuals at this level experience severe forms of the challenges seen in Level 1 and Level 2, including limited ability to communicate and interact socially with others.
Raising children with autism can be particularly challenging (6). Parenting, being a multifaceted activity, encompasses a variety of styles that naturally fluctuate in terms of control(7). Noh and colleagues, in their research, highlighted the impact of a child’s difficulty in adapting to social changes and behavioral issues, such as attention-seeking, disobedience, acceptability, and demandingness, on parenting. As primary caregivers, parents of these children play a crucial role, and assessing their interaction levels and capacity to handle the challenges presented by these children is a significant area of focus.
Rationale:
This article will contribute by providing valuable insights into the landscape of ASD in India by addressing the challenges in obtaining precise prevalence data, exploring the experiences of parents, and understanding the impact of ASD on parenting practices. By doing so, it aims to pave the way for increased awareness, improved support systems, and enhanced interventions for individuals with ASD and their families in the unique socio-cultural context of India.
Growing up in a family with an autistic member can impose a significant burden on non-autistic siblings, as studies have shown. Concerns about future responsibilities and uncertainties regarding parental support create additional stress. Non-autistic siblings may also experience feelings of frustration due to perceived unequal attention from parents and the burden of parental distress. Additionally, explaining their sibling’s condition to others and articulating their own struggles within the family can be challenging, leading to reluctance in discussing their experiences with their autistic sibling. Despite the challenges that may arise from having an autistic sibling, non-autistic siblings frequently prioritize their sibling’s well-being and inclusion in social settings. Research also suggests that the bond between non-autistic and autistic siblings remains stable throughout adolescence and into adulthood, indicating a lasting and supportive relationship.(8)
When a child receives a disability diagnosis, societal responses change, both formally through specialized institutions and informally in the way community members interact with disabled children. Parenting any child necessitates a role shift, subjecting new parents to unique stresses that may manifest as a crisis. The birth of an exceptional child introduces a situational crisis, arising from an unforeseen, traumatic event beyond parents’ control. Upon realizing their child’s exceptionality, parents experience shock and painful surprise, requiring an abrupt adjustment to a new parental role, challenging their self-image with new responsibilities and functions (9)
Moreover, heightened work and stress levels were reported when mothers of children with autism perceived less control over their situation, with the perception of parenting mediating that relationship (10). Although studies indicate that having a child with a disability or illness is particularly stressful for parents, especially mothers, few have delved into the relationship between stress and how mothers of children with autism cope with their child’s disability. Unfortunately, specific prevalence data and diagnostic criteria for autism spectrum disorder in India are currently unavailable.
Parents of children with Autism Spectrum Disorder (ASD) can indeed experience mental trauma due to various challenges they face. These challenges may include navigating the complex healthcare and educational systems, managing behavioral difficulties of their child, coping with societal stigma and misconceptions about ASD, and dealing with feelings of isolation and guilt. The uncertainty about the future and the constant need for advocacy and support can take a toll on parents’ mental health. Additionally, the financial burden of therapy and interventions adds to the stress.
According to a study Parenting Style and Parents Level of Stress having Children with Autistic Spectrum Disorder (CWASD): A Study based on Northern India the frequencies of the level of stress that is undergone by the parents of the autistic children, out of 320 parents, only 3.1% parents were in normal range. The findings further revealed that most of the parents (81.3%), were having high level of Stress and 15.6% parents were in the risk range.(11)
| Level of Stress | Frequency | Percent | Valid Percent | Cumulative Percent | |
| Valid | 59-94(Risk Range) | 60 | 18.8 | 18.8 | 18.8 |
| Above 94 (Clinical Range) | 260 | 81.3 | 81.3 | 100.0 | |
| Total | 320 | 100.0 | 100.0 | ||
Level of stress undergone by parents of children with ASD.
t’s crucial for parents to seek support from healthcare professionals, support groups, and mental health services to cope with these challenges. Building a strong support network, practicing self-care, and learning effective coping strategies can help parents manage their mental well-being while caring for a child with ASD.
Navigating the challenges of Autism Spectrum Disorder (ASD) can significantly impact the marital dynamics of parents, sometimes leading to divorce. The stress of managing a child with ASD, coupled with financial strains and differing coping mechanisms, can strain a marriage. Caring for a child with ASD often requires significant time and resources, which can lead to neglect of the marital relationship. Additionally, disagreements about treatment approaches, financial priorities, and the division of caregiving responsibilities can create tension between spouses. The emotional toll of witnessing the struggles of their child, coupled with feelings of isolation and grief over lost expectations, can further strain the relationship. In some cases, the pressure may become overwhelming, leading to marital breakdown and divorce.
Just a few studies have looked into how parents with a child diagnosed with autism spectrum disorder (ASD) feel about their marriages. The results show that these parents generally report being less happy in their marriages(12). Another study followed 199 married moms of teenagers and adults with ASD over 8.5 years. It found that when the kids had additional behavior problems (which often come with higher parental stress), the parents were less satisfied in their marriages at different points during this time (13) Now, what’s not so clear is how the day-to-day interactions between husbands and wives, both positive and negative, relate to the stress of raising a child with ASD. This is an area where we don’t have much information.
In one study, they followed almost 200 moms over more than eight years. They noticed that when the child’s behavior issues increased (which we know ramps up parental stress), the moms were also reporting lower satisfaction in their marriages at different times. So, it seems like the ups and downs of the child’s behavior are connected to how content the parents feel in their marriages.(14)
Imagine yourselves as parents, navigating the intricate challenges of raising a child with Autism Spectrum Disorder (ASD), where each day unfolds with its own set of hurdles and triumphs. Within this intricate tapestry of caregiving, research illuminates a sobering reality: couples confronting the complexities of ASD often find their marital happiness diminished, as if an additional layer of complexity intertwines with their shared journey, amplifying the strain and burden they shoulder together.(15)
It’s widely acknowledged that tending to an ill child imposes financial strains on families, but there’s less clarity on how this burden varies across different conditions. Our research indicates that caring for a child with mental health care requirements has a more pronounced impact on financial stability compared to caring for a child with other special health care needs. Parents of children with mental health disorders are also more inclined to reduce work hours, leave employment altogether, and devote more time to arranging their child’s care. Addressing disparities in private insurance coverage and offering financial assistance could significantly alleviate the economic hardships associated with caring for children with mental health disorders.(16) Researchers analyzed the out-of-pocket expenses and financial strain experienced by families with Children with Special Health Care Needs (CSHCN) across 13 distinct studies. Within seven of these articles, researchers specifically delved into how insurance status and type influenced the out-of-pocket costs borne by families.(17) The majority of researchers examining the impact on parental employment focused on how the severity and type of condition affect parents’ ability to work. However, only two studies exclusively explored the direct impact of having Children with Special Health Care Needs (CSHCN) on parental employment, without considering severity or type of condition. These studies revealed a decreased likelihood of full-time employment among parents of disabled and special needs children(18) Eight additional studies investigated the severity of the child’s condition and its repercussions on employment. Across these studies, a consistent finding emerged: the more severe the condition, the higher the probability that parents would decrease or cease their work commitments altogether.(19)
ASD presents global challenges due to insufficient prevalence data and diagnostic tools, particularly in countries like India. Parental stress, marital strain, and financial burdens are prevalent, necessitating comprehensive societal support including improved services and financial aid. Addressing these multifaceted impacts is vital for fostering inclusivity and support for affected individuals and families.
Based on the challenges outlined in the article regarding Autism Spectrum Disorder (ASD), the recommendations included are efforts are needed to enhance data collection and diagnostic tools for ASD, especially in countries like India. Comprehensive parental support programs, financial aid, improved accessibility to services, and promotion of inclusive environments are essential for addressing the multifaceted challenges faced by individuals and families affected by autism spectrum disorder.
Written by Aastha Tandon
Research And Analysis
Hibiscus Foundation
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