Introduction
The Autism Spectrum Disorder (ASD) is a diverse group of conditions that lead to developmental disabilities, social communication deficits, and the display of repetitive sensory-motor behaviours [1]. People of all genders, races, ethnicities, and economic backgrounds can be diagnosed with ASD. As per a recent study, it was found that approximately 78 million people worldwide are affected by autism, and the impact of this condition on individuals as well as, their families is immense [2].
Another study reported that the prevalence of ASD across five states in North and West India was as high as one in 125 children in the 2-6 year age group and one in 80 among children aged 6-9 years. The overall prevalence in India was estimated to be 1 in 89 [3].
The greatest obstacle faced by parents of a child with ASD is the time taken to reach a correct diagnosis. Often, differential diagnoses include conditions such as low Intelligence Quotient (IQ) and delayed speech milestones. Any delay in reaching the appropriate diagnosis means that interventions are also delayed. The diagnosis of ASD is based on observed and reported behaviour patterns, including impairment in social communication and interaction, along with restricted and repetitive behaviour patterns, as defined by the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) criteria [4].
Providing care for a child with ASD can be a traumatic and challenging experience for parents, especially when the support system is limited. Parents of such children typically present with anxiety and depression, deteriorated mental health, and a poorer quality of life compared to the parents or caregivers of typically developing children [5,6]. At the same time, parents’ increased stress and anxiety can lead to a worsening of behaviours in an ASD child, creating a bidirectional effect that exacerbates the situation [7].
In this review article, the different challenges faced by the parents and caregivers of autistic children have been discussed.
Challenges Faced by Parents
Parents of children with autism face numerous challenges in their day-to-day lives. These challenges differ as per the severity of the disorder. These challenges include the following:
Mental Health of Parents due to Childcare Duties
It is described as a negative, undesirable feeling triggered by the stresses of parenting when they exceed a person’s resources [7], inspiring them to follow coping mechanisms to handle their distress [8]. Levels of depression and stress are always higher in parents of children with ASD [9], and they also suffer from reduced psychological well-being [6,10]. Taylor JL and Warren ZE discovered depressive symptoms in 78.7% of mothers of children with ASD one week after they received the diagnosis, and 37.3% continued to report symptoms of depression an average of 1.4 years later [11]. Hartley SL et al., discovered the psychological well-being of fathers of adolescents and young adults with Down syndrome, Fragile X syndrome, and autism [12].
Demšar A and Bakracevic K conducted a study aimed to measuring the levels of stress, anxiety, and depression experienced by Slovenian parents whose children were diagnosed with ASD, as well as the coping mechanisms to cope with these situations. A total of 42 parents were included in the study, and the scales used were the Depression Anxiety Stress Scales (DASS) and the Coping Orientation to Problems Experienced (COPE) scale. The defendants described no raised levels of stress, depression, or anxiety, However, the mothers described more stress and anxiety-related symptoms than the fathers. The findings stated that positive reinterpretation is associated with higher satisfaction; specifically, when social support is strong, parents are much more satisfied and have a lower likelihood of experiencing depression and anxiety [13].
Mental health of parents of children with ASD during the COVID-19 pandemic
During the pandemic, it was very difficult for parents to teach their children about changes in routines and the safety measures they were required to take. In many cases, parents struggled to make their children understand these changes in a comprehensible manner [14]. A systematic review that included a total of 12 studies with 7,105 parents found that parental stress and anxiety increased, and they required more moral support than they required in the pre-pandemic era and few of them opted for coping strategies [14].
In a study conducted in Saudi Arabia, 94% of parents reported an increase in their stress levels, while 78.7% stated that the pandemic negatively affected their emotional well-being [15]. Amorim R et al., found that parents of children with ASD had higher anxiety levels than those with healthy children [16].
Parenteau CI et al., observed that parents had difficulty teaching their children the importance of social distancing, wearing masks, not to go in public places, as many children felt confined to their homes [17]. In a study by Manning J et al., 54.5% of participants stated that they were nervous about their children being at home all the time, 52.1% were fearful of themselves or their children contracting COVID-19, and 30.7% reported stress due to financial burdens [18]. In Spain, it was detected somatisation, obsessive behaviour, hostile behaviour, and aggression among parents eight weeks after the start of the lockdown [19].
Lack of Time for Self-Care
Self-care is one of those catchphrases that often goes in one ear and out the other. In today’s world, where demands are increasing and more time and energy are required to do a task as a family member, self-care has become a priority [20].
There is massive stress in the families of an ASD child. Therefore, it becomes important for family members and parents to engage in self-care programmes to alleviate some of this stress, enabling them to focus on the needs of their children’s needs.
There are numerous benefits of self-care:
a) Stress reduction: Self-care helps parents recharge both their minds and bodies, aiding in the maintenance of calmness.
b) Rejuvenation of energy levels: Activities like going out as a couple for dinner, without the children, can help reduce stress and regaining the lost energy. Various approaches to self-care that parents can adopt include enjoyable actions and support systems: It comprises hobbies, revitalising exercises, and taking help from support groups.
c) Self-awareness and mindfulness: Parents should assess whether their behaviours support their well-being. In such scenarios, they can practice meditation poses and deep breathing exercises to remain calm and composed.
d) Multi-tasking for efficiency: Since time is limited, parents do more than one task in a single frame of time, which could be beneficial for self-care. For example, while the child is busy in sessions or therapeutic activities, parents can utilise that time for self-care practice like engaging in hobbies.
e) Practicing gratitude and positive thinking: Each day, we encounter positive aspects or events in our day-to-day life, though it may be very small, but appreciate and notice each moment of joy can shift parents’ focus away from stress and challenges. Making a habit of noting these moments can foster positive thoughts and help in promoting the opportunistic mindset [20].
Communication and Behavioural Issues Faced by the Parents/Caregivers
In a few children suffering from ASD, verbal communication remains a challenge. In these cases, parents often find it difficult to understand what their child needs, thus increasing stress and anxiety among them [21]. The developmental outcome of the child depends on the quality of interaction between the parent and child. It has been observed that parents of children with a family history of autism behave very differently compared to those parents who had not [21]. Children with ASD usually communicate or use language based on their intellectual or social development. There are a few patterns of language use, including: repetitive or rigid language, narrow interests, and exceptional abilities, as well as, uneven language development and poor nonverbal conversation skills [22].
A study was conducted to explore the sources of stress and the variables/predictors affecting parents of children with ASD, especially about language skills. It consisted of 80 parents and a questionnaire was used. The most common sources of stress included concerns about the future of the child and the inability to understand/difficulties in understanding the child’s speech and language. Multiple regression analysis indicated that the child’s communication and language skills were valid predictors of parental stress [21].
Behavioural challenges associated with ASD include violence/anger toward others, self-harming behaviours, and severe tantrums [23]. Numerous challenging behaviours are seen in a children with ASD. For example, a survey of 2,327 individuals on the autism spectrum found that more than 40% exhibited both aggressive behaviours and Self-Injurious Behaviour (SIB) [24].
Stigmatisation
Stigma can be defined as a process by which some sections of society, especially those suffering from mental illness or intellectual disabilities, are marginalised and devalued because of the differences in their values, characteristics, or practices from the dominant cultural group. Stigma often results through a combination of stereotyping, prejudice, and discrimination [25].
Broadly, stigma can be classified as public stigma, self-stigma, stigma by association (also known as courtesy stigma), and affiliate stigma. Public stigma may arise due to the negative attitudes and reactions of the general population towards certain individuals or groups, such as those suffering from mental illnesses. For instance, endorsing negative stigma may entail fear and exclusion of those suffering from mental illnesses due to their sometimes erratic behaviours [26].
Self-stigma refers to the process of internalising society’s stigmatising ideas and perceptions, which may lead individuals to believe they will be devalued [26]. A recent systematic review of people suffering from mental illness found that internalised or self-stigma may have serious consequences on their well-being including a negative impacts on self-esteem and an increase in the severity of aberrant behaviours, thereby leading to a reduction in quality of life [27].
The effects of stigmatisation may also extend to those who are close to the stigmatised individual, such as parents, siblings, friends, and co-workers. This phenomenon is known as courtesy stigma. It may lead family members to be teased, blamed, or held responsible for the person’s disability [28]. A common scenario is that parents are often blamed for their child’s disability, stemming from the belief that the child may have received inadequate parental care or that there is some genetic flaw in the parents [29]. Courtesy stigma against parents can lead them to internalise the stigmatic experiences and negative perceptions, resulting in affiliate stigma [30]. For example, a parent of an autistic child may feel shame or stress when taking their child out in public and may refrain from having any contact with others as a result. It may lead to isolation and withdrawal as a protective measure to conceal their perceived negative status from others [31].
According to a study, certain factors can influence the level of stigma against autistic individuals. One factor is the quality and quantity of contact that autistic people have with others. Cultural differences, including specific beliefs that people hold about the condition, also play a role. Gender, education, and age are important factors as well. Lastly, whether a person with Autism has disclosed information related to their diagnosis can affect the stigma being faced [32].
A review of 25 studies found that parents of children with autism perceived and experienced stigma that varied according to the severity of symptoms and the behaviour of the autistic child, especially for mothers [33].
Autistic behaviours contribute both to the difficulties experienced by the parents of a child with autism as well as, to the stigma associated with those behaviours. Stigma also played a significant role in predicting how difficult life is overall for parents [34].
Financial Burden
A study found that the parents of autistic children earn less money and have increased expenditures. They also experience high levels of stress and anxiety, along with significant difficulties in accessing childcare and other needed services at school. Additionally, it was found that raising a child with ASD can cost at least twice as much as raising a typically developing child [35].
A Chinese study reported that 58% of families with children with ASD had problems related to child care that caused great difficulties and markedly affected their career decisions, compared to only 9% of families with typically developing children (p-value <0.001). After adjusting for the age of the child, parental education, and parental age, having a child with ASD increased the odds that childcare greatly interfered with employment (ASD, OR: 15.936; p-value <0.001) and decreased the odds of living in a higher-income household (ASD, OR = -1.271; p-value <0.001). The average loss of annual income associated with having a child with ASD was roughly 2,000 United States Dollars (USD), compared to approximately 3,400 USD for families with typically developing children with other disabilities. It was concluded that ASD is associated with severe employment challenges and increased financial burdens [36].
According to another study by Lavelle TA et al., children with ASD were reported to have a higher number of healthcare office visits and prescription drug usage compared to children without ASD (p-value <0.05). The study concluded that the economic burden associated with ASD is substantial and widespread across various sectors of society [37].
A recent study from Bangladesh by Bhuiyan MR et al., reported that the average monthly family income was Tk. 41,785.70, while the total treatment cost was Tk. 23,076.62 for a family with a child with ASD. Approximately 52.5% of families had minimised family investment, and 52.2% reported experiencing financial constraints, which were significantly higher compared to families with typically developing children (p-value <0.05). To compensate for the increased financial burden, families coping strategies, included changing lifestyles, seeking social support, relying on religion, minimising family investment, and accepting their reality [38].
Role of nurses in combating parental stress in children with ASD:
The detection of children with ASD during infant health check-ups and among school-aged children is a key role of public health nurses. However, these nurses often encounter difficulties in assessment or detection, as most of the nurses are not familiar with the characteristics or signs that a typical child with ASD may exhibit during check-ups [39]. The role of nurses in providing support to parents, which can help reduce their stress and anxiety is discussed herewith.
The first role should be to guide parents regarding the signs of ASD. Secondly, after identification of these signs, they should provide a support system. This can be achieved in various ways:
Building support systems: This includes providing or sharing information with parents regarding different rehabilitation centres that exist in the surrounding area. Nurses can also educate parents about the condition and mentor junior nurses on the situation [39].
Support through the development of human resources: When parents describe about the emotions and feelings they perceive when their child is diagnosed with ASD, it becomes the role of nurses to understand their state of mind. Parents will be suffering from mixed feelings and may have a confused state of mind [39]. The therapist needs to detect the parents’ confused emotions and accept them as a reality [39]. There should be a relationship of sympathy or empathy between nurses and parents. When parents feel that their feelings are being acknowledged and listened to, a support system can be created between both parties.
In one case described in the literature, parents who were navigating through mixed feelings/emotions while in the way of accepting their child’s condition they used to read books about ASD, eager to increase their knowledge. They also took the initiative to educate other parents at the centre on how to support their children and accept the condition. This case discovered the level of support that nurses must provide to parents, similar to the proactive approach taken by these parents [39].
Providing support for the whole family: Public health nurses need to care not only for the parents of children with ASD but also for the entire family by understanding their lifestyle. Public health nurses should encourage the sharing of a common bond of understanding among the different family members [39].
In India, awareness about autism is still evolving, and the services provided are scarce and limited. Therefore, it is beneficial to create a framework that addresses the issues of awareness and the stress that parents of autistic children face. The government is also taking initiatives to frame policies that effectively support autistic children as well as their parents [40].
Conclusion(s)
To conclude, the parents of children with ASD face tremendous challenges in successfully raising their child. These challenges come in various shapes including mental stressors, communication challenges, societal stigmas, and financial burdens. Ultimately, these challenges affect the mental health and self-esteem of the parents and caregivers. Parental stress management for parents becomes imperative to cope with the increased demands of life and parenthood.
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