Parents’ Perception of Their Children’s Disability

Abstract

The current paper investigates perceptions of diverse parents on the disability of their children in early childhood. It is based on a review of research literature; for the paper, 17 scholarly articles were used. The beliefs of parents from a range of diverse groups and cultures were explored; in particular, the impact of such factors as socioeconomic status, religious views (Judaism or Islam), language (native and non-native speakers of English in the United States), gender, country (Saudi Arabia, India, the U.S.), and minority groups in the U.S., was considered. It is concluded that representatives of different varieties may have considerably different perceptions of childhood disability, and these should be taken into account by special education professionals when delivering service to children with disabilities.

Introduction

In the modern world, which continuously becomes more and more diverse, representatives of various groups might have very different beliefs about certain disabilities. Therefore, special educators dealing with a variety of attitudes among diverse parents of children with disabilities should be aware of the specific views of these parents to be able to better address the children’s needs. However, research on diverse parents’ beliefs about their children’s disability is limited, and literature that could serve as a comprehensive guide on the topic does not seem to exist. This paper is my modest attempt to partially address this gap by synthesizing the information from the recent research literature to provide insight into beliefs of diverse parents about their children’s disabilities across such categories as socioeconomic groups, several major religions, languages (native vs. non-native speakers of English in the U.S.), genders, countries (namely, Saudi Arabia, India, and the U.S.), and minority groups in the U.S. (as opposed to the White, English-speaking majority).

The rationale for Studying the Chosen Problem

For the current review, I chose the problem of beliefs of parents about disabilities of their young children across various cultures and different social perspectives. This is because it becomes increasingly important for professionals in special education to be aware of various cultural views, convictions, and perceptions of individuals in the contemporary world, which continuously becomes more and more diverse. Special educators need this awareness to be able to appropriately provide the children with disabilities of these families with special education while taking into account the perceptions and beliefs of their parents. Also, the knowledge about various convictions of parents about the disabilities of their children is vital for professionals in special education because it may allow for better parent-educator collaboration and permit the teacher to more effectually address the peculiarities and specific vulnerabilities that are characteristic for representatives of a particular culture.

For instance, it was found out that among Indian parents of children with autism spectrum disorders, the term “autism” is not widely known, which might cause these parents to disregard the condition of their child diagnosed with autism simply because of not understanding what it entails (Desai, Divan, Wertz, & Patel, 2012). Therefore, it is paramount for special educators dealing with parents of children with autism spectrum disorders who have recently emigrated from India to provide these parents with sufficient information about this condition to ensure that they take all the needed steps to address the condition of their offspring properly, as soon as possible, to minimize the adverse impacts of the condition on the child. Thus, the awareness of various cultural peculiarities of diverse families is pivotal for special educators because such awareness might help them to address the specific issues of such families most effectively to ensure better outcomes for their children with disabilities.

Methods

For this paper, I used only recent (not more than 10 years old), peer-reviewed, empirical research (not literature review) articles. I combined keywords such as “perceptions,” “parents,” “children with disabilities” with keywords related to a particular aspect (e.g., “socioeconomic status” or “Judaism”) to find relevant articles. One of the main search criteria was the date of publication; only articles published not earlier than in 2008 (i.e., no older than 10 years old) were sought, and preference was given to articles published since 2012. The articles were sought in such databases as ProQuest, EBSCOhost, Taylor & Francis Online, NCBI, etc. Some articles were found via Google Scholar; their full versions were obtained via the Washington State University library website. Google Scholar website was also employed for cited reference searching, i.e. for finding studies that cited a given article and choosing those studies which were relevant for the paper. I also utilized data mining, i.e., I searched the reference lists of the downloaded articles to find additional relevant articles.

My search efforts permitted me to download and review approximately 36 articles about the issue of cultural diversity concerning families of children with disabilities. The articles were downloaded primarily from such databases like ProQuest, EBSCOhost, and NCBI. Out of these, 16 studies were retained to be used in the review; the main criterion was that the articles should report and original, empirical study, rather than be a literature review. Also, the article by Harry (2002) was added to the reviewed literature due to a recommendation by the instructor and because it was rather suitable for the current study.

Literature Review

The following literature review pertains to the perceptions of diverse parents on childhood disability. Several aspects were investigated. Such factors as belonging to different socioeconomic groups, following various religious traditions (namely, Judaism and Islam), speaking different languages, and the gender of the child with a disability, were explored. Next, beliefs about childhood disability that are associated with the cultures of several countries (namely, Saudi Arabia, India, and the U.S.), were explored. Finally, the impact of the culture of various minority groups in the USA on the parents’ views on disability was considered within the current literature review.

Socioeconomic Groups

No recent research studies were found that would directly examine the attitudes of parents of children with disabilities depending on the socioeconomic status of these families. However, it is known that in general, different social classes might perceive their children differently. For instance, it has been found that it is more common for parents from the middle and upper social classes to be actively engaged in the process of raising children and being directly involved in their activities (Milkie, Kendig, Nomaguchi, & Denny, 2010). On the other hand, for parents who represent the working class, or for poor parents, it is stated to be more common to be convinced that their children should grow more “naturally,” and that these parents should love their offspring and provide for them, but should not be overly involved in the process of their upbringing (Milkie et al., 2010).

It might be possible to hypothesize that this finding could be extrapolated to parents of children with disabilities; this might be confirmed by the fact that Szumski and Karwowski (2012) discovered a positive association between the higher socioeconomic status of parents and the engagement of the latter in the studies of their offspring with various disabilities. When it comes to the social class of parents, it should also be noted that for parents with the greater socioeconomic status it should be easier to provide appropriate care for their children with disabilities due to greater access to financial, and, possibly, temporal resources which are required for such care (Olsson & Hwang, 2008).

Also, it should be stressed that according to Durkin et al. (2010), in the U.S., the prevalence of children who were diagnosed with autism spectrum disorder is the lowest for families with low socioeconomic status, higher for families with medium socioeconomic status, and the highest for families with high socioeconomic status; the prevalence ratios were highly statistically significant. The authors concluded that this might indicate that there is an assessment bias leading to children with lower socioeconomic status not being diagnosed with autism when they should (Durkin et al., 2010).

Religions

Not much research exists on the perceptions of parents to their children with disabilities in a religious context. Several articles describing such attitudes in Judaism and Islam were obtained. Unfortunately, no recent research studies on attitudes of Christian parents to their children with disabilities were found, leaving the third major world religion out of the focus of this paper.

Judaism

Generally speaking, in Judaism, it is considered that a community can be judged by how it treats its members who are exceptional (Manor-Binyamini, 2012). Multiple parts of Tanakh may be interpreted as requiring Judaists to demonstrate charity, love, grace, and mercy to children who have a disability (Manor-Binyamini, 2012). Therefore, it is common for children with disabilities to receive protection in a society following Judaism, although offspring with less severe disabilities receive less protection (Manor-Binyamini, 2012). It is stated that Judaist parents of children with disabilities often cope well with the stress associated with raising such offspring, obtaining support from their religion, as well as from the internal sense of coherence (Manor-Binyamini, 2012). This statement obtained support from the study by Manor-Binyamini (2012), who discovered that parents of children with disabilities who followed ultraorthodox Judaism had a greater sense of coherence and growth than parents of offspring with disabilities who were secular. On the whole, Judaism provides various supportive resources to parents of children with disabilities.

Islam

According to Jegatheesan, Miller, and Fowler (2010), parents of children with disabilities who possess strong Muslim convictions often tend to view the task of raising their children in the religious context. For instance, when speaking about parents of offspring with autism, strongly religious Muslims view their religion as a general framework that provides them with a meaning of having such a child (Jegatheesan et al., 2010). In contrast to the widespread understanding of the situation when one has to raise a child with disabilities, according to which this situation is rather unpleasant, it is stated that Muslims tend to view their offspring with autism as a “special child,” and feel blessed by Allah, who, according to their beliefs, took into account these parents’ characteristics such as their loving nature, high level of morality, the ability to protect such a child, their resilience, their fate, and their Karmic ties to the child with disabilities and gave them the mission of raising such an offspring (Jegatheesan et al., 2010). All in all, Islam seemed to provide the studied parents with a coping mechanism allowing them to obtain positive emotions where most people would only experience negative ones.

Languages

Traditionally, it has been assumed that such factors as one’s race, language, culture, and so on should not have an impact on the special education services provided for a person. Nevertheless, it might be possible to hypothesize that e.g. in the U.S., children whose families use English as their first language is in the privileged position in comparison to the rest of the children, for the majority of educational services which are provided for the population are in English (Jegatheesan, 2011). This also pertains to the special education services, especially when the offspring requiring such services have disabilities that have an impact on their language skills (Jegatheesan, 2011). For instance, when it comes to children who find it difficult to learn more than one language due to their disability (e.g., a learning disability or autism), their families, if their first language is not English, might experience problems when attempting to provide education for their children that would be delivered in their first language (Jegatheesan, 2011).

Furthermore, Jegatheesan (2011) supplied an example of a child whose parents were advised against using their native language at home to enable that offspring to better learn and use English. However, the family couldn’t stop employing their native language at home, for the child’s grandparents did not speak English at all (Jegatheesan, 2011). As a result, parents continued utilizing their native language at home but avoided telling therapists that they did so, trying to convince the latter that only English was used (Jegatheesan, 2011). In this situation, it is clear that putting pressure on parents to make them employ solely English in their communication with the child only caused anxiety on part of the parents, who were worried that the therapists would find out about the “forbidden” use of their native language in communication with the child (Jegatheesan, 2011).

Therefore, it might be possible to conclude that in the U.S., having the first language which is different from English may present an additional challenge for parents of children with disabilities (Jegatheesan, 2011). On the other hand, having English as the first language should simply present no complications for parents, therefore probably being a privilege which perhaps even remains unnoticed by such parents. As for the other aspects of parents’ perceptions of the disability of their children, it may be assumed that these depend mainly on factors other than language (for instance, on religion, the cultural group a family comes from, and so on.

Gender

On the whole, it should be noted that the research on the problem of gender differences in the perceptions of parents on their children is very limited. In particular, no studies investigating the impact of the gender of children with a disability on how their parents perceived them were found. In particular, I found no studies that would explore how the gender of children with disabilities impacts their parents’ perceptions and attitudes. On the other hand, the study by Shandra, Hogan, and Spearin (2008) explored how the gender of parents affected their perceptions of and their relationships with their children with disabilities.

Generally speaking, the relationships of parents with their children were found to be affected by the parents’ gender in a manner that is dictated by the gender roles which commonly exist in society. For instance, mothers usually were primary caregivers when it came to daily maintenance tasks; on the other hand, fathers usually took the responsibility of providing for their family financially to allow for affording medical care and permit children to gain independence in the future; fathers also concentrated on the child’s social activities, e.g. playing, disciplining, nurturing, whereas mothers focused mainly on such issues as teaching, feeding, hygiene, and therapy (Shandra et al., 2008). It should be noted that in families with children with serious disabilities, such as autism, mothers sometimes left their jobs to provide care for the child, which also placed an additional financial burden on the father (Divan, Vajaratkar, Desai, Strik‐Lievers, & Patel, 2012), as well as made the relationships between the father and the childless close (Shandra et al., 2008). In this respect, it should be stressed that male children tend to report close relationships with their fathers more often than female children (Shandra et al., 2008). Also, fathers were usually less involved in health care activities for their children, probably because it was difficult for them to admit that their offspring had a disability, and to cope with the social stigma which often accompanies this situation (Farrugia, 2009; Shandra et al., 2008).

Countries

Saudi Arabia

In Saudi Arabia, parents of children with disabilities were found to have a relatively low quality of life (Haimour & Abu-Hawwash, 2012). More specifically, in a study by Haimour and Abu-Hawwash (2012), parents of children with a learning disability obtained the highest overall quality of life scores (they were the happiest); they were followed by parents of children with a physical disability; then by parents of children with “mental retardation”; and, finally, by parents of children with autism, who had the lowest overall quality of life.

When it comes to perceptions of Saudi Arabians on the causes of such a disability as autism, parents of children with this disorder were found to view the following factors as the causes of autism: medical examinations during pregnancy; vaccination; the dearth of vitamin B during pregnancy; childhood trauma; and the lack of breastfeeding (Alqahtani, 2012). Also, nearly three-fourths of parents of children were convinced that “the evil eye” could cause their child’s autism, whereas three out of 47 interviewed families stated that autism was caused by black magic (Alqahtani, 2012). Such actions as reading Al-Quran and visiting healers were the most frequent interventions taken by parents of children to address the autism of the latter; sometimes these interventions were used in parallel or after such methods as hyperbaric oxygen therapy or autism-diet (Alqahtani, 2012).

India

In their study, Divan et al. (2012) discovered that a sample of parents of children with autism in Goa, India, often possessed a strong commitment towards their offspring and spouses; considered their children “different”; coped with stress by sharing emotions with spouses; often underwent severe health problems; often became homebound (especially mothers); often ceased social interactions with others, and disengaged from relationships with other family members. Also, some parents of children with autism became more religious due to their offspring’s condition (Divan et al., 2012).

Another study in Goa, India unveiled that parents of children with autism initially greeted their child with joy upon the birth; however, later they found that the child diverged from the path of normal development, but believed the divergence to be temporary; even later, they found that the behaviors persisted, and experienced serious concern about their offspring; finally, parents accepted the offspring’s condition and started searching for ways to expand the child’s limited capabilities (Desai et al., 2012). In contrast to a similar study in the U.S. (Altiere & von Kluge, 2009), Indian parents had never heard the term “autism” previously, and initially disregarded this condition; later, they decided it still indicated an open-ended future for the child (Desai et al., 2012).

The U.S

In Michigan, the U.S., a sample of respondents – parents of children with autism believed the development of their offspring was normal during the first 1-1.5 years of the offspring’s life (Altiere & von Kluge, 2009). However, some of the parents of children noticed that something was wrong rather early, but pediatricians reassured them that there was no cause for concern (Altiere & von Kluge, 2009). The rest of the parents noticed some problems later, and became seriously worried; their children displayed confusing symptoms and were often misdiagnosed (Altiere & von Kluge, 2009). When the parents first heard the term “autism,” they initially resisted accepting the diagnosis; after accepting it, they were devastated (Altiere & von Kluge, 2009). Due to the need to care for their offspring 24/7, the parents lost social contacts and, consequently, some support from their friends and family (which is pivotal in this case, according to Hall, 2012,); they also experienced personal struggles related to financing child care, leaving work (Altiere & von Kluge, 2009). However, most of them believed there was a solution for their offspring’s condition, and did not cease searching for it (Altiere & von Kluge, 2009). Although having a child with autism usually has a detrimental effect on the psychological condition of parents, respondents noted that they had some useful learning experiences due to the need to care for such a child (Altiere & von Kluge, 2009).

Minority Groups

Research on the attitudes of parents of children with disabilities towards these children in minority groups is rather limited; very few recent studies have been found which pertain to this issue. Such authors as Luong, Yoder, and Canham (2009) qualitatively investigated the coping styles of nine Southeast Asian American parents of children with autism spectrum disorders. Nine main phases of the evolution of behaviors and attitudes towards children with autism were discovered (Luong et al., 2009). These phases were (Luong et al., 2009, pp. 226-228):

  1. denial or passive coping, when parents were concerned about their children’s conditions but took no action (Luong et al., 2009, p. 226);
  2. empowerment, when parents realized which condition their children suffered from, and experienced anxiety, frustration, disappointment, etc. (Luong et al., 2009, p. 226);
  3. redirecting energy, when parents took action, which resulted in a treatment plan (Luong et al., 2009, p. 226);
  4. shifting focus, when many parents decided that their jobs, their happiness, etc. were to lose priority in comparison to the well-being of their child with autism (Luong et al., 2009, p. 226);
  5. rearranging life and relationships, when many mothers decided to stay at home with their children and quitted their jobs to provide care for them (Luong et al., 2009, pp. 226-227);
  6. changed expectations, when the parents comprehended the degree to which their children were limited (Luong et al., 2009, p. 227);
  7. social withdrawal, when parents, because of being exhausted both physically and psychologically due to the need to care for their children, withdrew from their social relationships (Luong et al., 2009, p. 227);
  8. spiritual coping – the phase at which parents reported to have employed spiritual resources (such as religious beliefs, changes in the worldviews, etc.) to cope with the pressure of having an autistic child, e.g. by asserting that they knew they were to play the role of their child’s care providers (Luong et al., 2009, p. 227);
  9. acceptance, when the parents finally adapted to the condition of their children and adjusted to its implications (Luong et al., 2009, pp. 227-228).

However, it should be noted that these findings are based on a study of nine first-generation Southeast Asian American parents only, and it is problematic to generalize them even to the named population, let alone to the population of all the ethnic minorities in the U.S. (Luong et al., 2009).

Another study by Harry (2002) discussed the problem of cultural diversity in the U.S. and the attitudes towards it. The U.S. is described as a place in which there exists a shared mainstream culture that is combined with the peculiarities of certain subcultures (Harry, 2002). In other words, a shared macrocultural framework exists over plentiful microcultural groups that retain numerous specific features of their own (Harry, 2002). Most of these groups tend to view disabilities in a different light; they construct it differently from each other and special education professionals, possess different expectations towards children with disabilities, utilize various coping styles, and parent their children differently (Harry, 2002, p. 134). For instance, people of Asian origins tend to perceive disability as spiritual requital, whereas Native Americans often focus on the wholeness of spirit in an individual with a disability, and consider various manifestations of disability (such as epileptic seizures) as reflections of spiritual processes taking place in a person (Harry, 2002). Thus, various minority groups in the U.S. perceive childhood disability differently, which should be taken into account by special educators who work with diverse children with disabilities in the U.S.

Recommendations

Future studies might further explore the attitudes of diverse parents towards their children, for the current paper covered only a tiny fragment of the whole picture. For instance, the beliefs of parents belonging to different religious traditions, such as Buddhism, Daoism, or various Christian denominations, could be explored. It may also be fruitful to examine the impact of a child’s gender on their parents’ perceptions of the disability of that child. It should also be of great use to explore in more detail the perceptions on childhood disability that are typical of parents who come from different minority groups. In the U.S., several studies that would investigate most of the subcultures existing within the country separately, followed by research that would combine this knowledge into a comprehensive overview, would be of great use for special educators. Also, studies investigating the beliefs of parents who exist at the intersection of various cultural groups may also provide additional insights for special education professionals. Finally, studies on best practices in special education when dealing with children with disabilities from diverse families might also be helpful.

Discussion and Conclusion

On the whole, 17 articles were retained and reviewed to provide insights into diverse parents’ beliefs about their young children’s disabilities across an array of groups and cultures, such as various socioeconomic groups, followers of two major world religions, languages (native vs. non-native speakers of English in the USA), genders, several countries (Saudi Arabia, India, and the USA), and minority groups in the USA (as opposed to the White majority that speaks English as their first language). It was discovered that representatives of some of these groups may have quite peculiar views on childhood disability, and might construct or explain it differently. For instance, some parents in India may not be familiar with the term “autism spectrum disorders,” and might not realize the severity of this condition and the need to act promptly to minimize its adverse effects on the outcomes of their children.

These findings mean that the perceptions of parents on childhood disability should be investigated further to permit special education professionals to be aware of cultural nuances to address the young children’s disabilities more effectually and to improve the quality of parent-educator collaboration. It is recommended that the various aspects of attitudes of parents towards their offspring with disabilities and the relationships between them are taken into account by special education professionals when dealing with children with disabilities from diverse families.

References

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