Parents of children with Asperger syndrome or with learning disabilities: Family environment and social support

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Abstract

The study examined the family environment and perceived social support of 33 parents with a child diagnosed with Asperger syndrome and 43 parents with a child with learning disability, which were compared to 45 parents of children without disabilities as a control group. Parents completed the Family Environment Scale and Social Support Scale questionnaires. The comparison revealed significant differences for expressiveness and family system organization and for social support. Parents with an Asperger child perceived their family's expressive feelings as lower and the family organization as higher, and perceived their friendships and other support as lower than the other groups of parent. Parents of the control group reported the highest family support. The study highlighted the need for additional social support for parents with a child with special needs, and accentuated the importance of developing awareness and intervention programs to facilitate parents’ coping abilities and their family interactions.

Introduction

A child with special needs has significant effects on family functioning and on family relationships, and may create some changes in the family's routines (Marvin & Pianta, 1996; Turnbull & Turnbull, 1990; Waggoner & Wilgosh, 1990). Parents of a child with special needs experience a larger number of care giving challenges such as more health problems, greater feelings of restriction, and higher levels of parental stress or depression, than parents of children without specific disabilities (Quine & Paul, 1985; Roach, Ormond, & Barratt, 1999; Valentine, McDermott, & Anderson, 1998). This study focuses on two main domains. These are the family environment, and social support, as perceived by parents from the three different groups: with a child diagnosed with Asperger syndrome, with a child with learning disabilities and as the control group, families with a child with no specific difficulties.

Various studies have been conducted on parental adjustment and the coping process in families with a child with special needs. Some of them describe the stages and process experienced by parents of children with various disabilities (Blacher, 1984, Falik, 1995; Marvin & Pianta, 1996), indicating that the crisis engendered by the diagnosis that something is wrong with their child is probably the parents’ most difficult experience. The difficulties encountered by parents coping with a child with a disability and their familial relationships have been cited as a source of anxiety, overprotection, and rigidity (Lardieri, Blacher, & Swanson, 2000). Numerous studies have examined parents’ coping with a child with intellectual disability (ID) (e.g., Blacher, 2001), parents’ attitudes and adaptations when coping with children with cerebral palsy (Lin, 2000), or focused on parents’ resiliency and expectations within families with a child diagnosed with learning disabilities (LD), ID, autism, with physical disabilities (e.g., Heiman, 2002), or with children with Asperger syndrome (Diggle, McConachie, & Randle, 2002). The literature review shows few studies examining how parents with a child with Asperger syndrome perceive their family relationships and support, compared to studies on families with a child with LD.

Asperger syndrome is a neurobiological disorder named for a Viennese physician, Hans Asperger, who first described the disorder in 1944. Asperger syndrome is characterized by significant impairments in social interaction, and restricted and unusual patterns of interest and behavior. These impairments may manifest by difficulties in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction; failure to develop peer relationships appropriate to developmental level; a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people; stereotyped patterns of behavior; repetitive motor mannerisms and activities (APA, 1994). In the 10th revision of the International Classification of Diseases (ICD-10) (WHO, 1992) Asperger syndrome is a subcategory of Pervasive Developmental Disorders. Findings based on clinical work (Ehlers & Gillberg, 1993) show a minimum prevalence of 3.6 per 1000 children (7–16 years of age) and a male to female ratio of 4:1. When suspected and possible Asperger syndrome cases are included, the prevalence rose to 7.1 per 1000 children and the male:female ratio dropped to 2.3:1.

Parents raising a child with Asperger syndrome face a range of difficulties (Diggle et al., 2002). Many of these parents have to provide, in addition to the usual general care, a much more intensive level of care, such as, structuring their child's daily routines, creating opportunities for socializing, daily activities and further education, and providing companionship (Portway & Johnson, 2005).

As noted in various studies, families with a child diagnosed with Asperger may be exposed to different life routines than families without a child with disabilities. Specifically, they may experience a higher level of stress, and may find a lack of appropriate local services and insufficient special education facilities (Cantwell & Baker, 1984). Sivberg (2002) examines the strain on the family system, as well as the level of coping and types of coping behavior of the parents, in families with a child diagnosed as having an autistic spectrum disorder (including Asperger syndrome) as compared to families in a control group. It was found that that the two groups differed in their pattern of coping behavior. Because lower levels of coping were associated with higher levels of strain on the family system, the level of strain on the family system was greater in the families with a child with an autistic spectrum disorder.

Furthermore, mothers with a child with Asperger were found to experience significantly more stress than fathers; they also perceived greater stress for other family members and were more likely to seek professional help, to take medication for depression and to be more pessimistic about their child's future (Little, 2002). Parenting a child with Asperger was found to be positively related to adaptive coping processes, such as social support, self-efficacy, and problem-focused and emotional approach coping strategies (Pakenham, Sofronoff, & Samios, 2004).

The term ‘learning disabilities’ refers to a heterogeneous group of disorders manifested by significant difficulties in the acquisition and use of listening, speaking, reading, writing, reasoning, and/or mathematical abilities (National Joint Committee on Learning Disabilities, 1997). The Israeli definition adopted the NJCLD, so students who were identified as having a LD obtained a normal IQ distribution as measured on the Wechsler Abbreviated Scale of Intelligence (WASI; Wechsler, 1991) and additional Spelling, Arithmetic, and Reading subtests adapted to the Hebrew language. Prevalence estimates for children with LD range from 5 to 6% of students between the ages of 6 and 17 (U.S. Department of Education, 2000), up to 10–15%, the estimate of the range of K-12 students by the Ministry of Education in Israel (2007).

Different studies point to three main factors which may influence the development of children with disabilities, the child's characteristics, familial aspects, and the social environment (Masten & Garmezy, 1985; Morrison & Cosden, 1997; Werner & Smith, 1992). Moreover, it appears that interactions between parents and their children with LD may have an essential influence on the social perception and family relationships (Wong, 2003) and on the social development of children with LD (Dyson, 2003).

The literature on interactions in families of children with LD presents a mixed picture. Early reports characterized parents of children with LD as conflict avoidant, and overprotective, indicated that the mothers of children with LD perceived their families as more rigid and less flexible. They were significantly more controlling, emphasized organization and were more rigid and authoritarian (Humphries & Bauman, 1980; Margalit, 1982; Perosa & Perosa, 1982) and less encouraging and supportive relative to mothers of normally achieving children. Mothers of boys with LD perceived their families as less encouraging of emotional expressiveness and independence. They reported lower levels of coherence, less emphasis on the personal growth of other family members, and had greater emphasis on control and organization within the family members and on the importance of personal achievement, relative to mother with NLD boys (Margalit & Heiman, 1986). Similar results indicated that mothers of children with LD perceived their families as demonstrating more conflict and placing more emphasis on achievement and religion (Margalit & Almougy, 1991; Perosa & Perosa, 1982). Michaels and Lewandowski (1990) suggest that the presence of a child with LD imposes a certain degree of adaptation and adjustment by families. It appears that families that are more rigid may have more difficulty in adapting to these increased demands, which may exacerbate the challenges posed by a child with an LD. Moreover, families who were flexible and cohesive, demonstrated affective support, and employed effective coping strategies seemed to be more successful in responding to the needs of children with LD (Morrison & Cosden, 1997). Michaels and Lewandowski (1990) suggest that the presence of a child with an LD necessitates a certain degree of adaptation and adjustment by families. Families that are more rigid may have more difficulty adapting to these increased demands, which may exacerbate the challenges posed by a child with LD.

On the other hand, other investigators have determined that these families are more similar than different in terms of their family functioning (Dyson, 1996; Feagans, Merriwether, & Haldane, 1991; Heiman, 2002; Morrison & Zetlin, 1992). For example, Dyson (1993) finds that families of children with disabilities are largely similar to families of children without disabilities in terms of family functioning. The few differences that emerged between the groups suggest that families of children with disabilities may be less emotionally expressive and place a higher emphasis on control and organization compared to families of children without disabilities. Other studies have indicated no significant differences between families in terms of their family functioning (Dyson, 1996, Feagans et al., 1991; Morrison & Zetlin, 1992) or resiliency (Heiman, 2002).

To summarize, research on families with a child with disabilities have reported mixed findings. Some studies suggest important differences between these parents and parents of NLD children, and others indicate that the family environments of these two groups are more similar than different. Families of children with disabilities may be less emotionally expressive and place a higher emphasis on control and organization relative to families of children without disabilities (e.g., Dyson, 1996; Margalit & Heiman, 1986). However, the concept of family climate is considered an important family dynamic, which has cognitive, social, and emotional aspects (Moos & Moos, 1983).

The few studies examining the family factors associated with successful outcomes in children with LD have highlighted the importance of family support. The family is an important and healthy source of support for children with LD. Jain's (1990) study revealed that these families have the potential to influence their children's adjustment positively by the degree to which they demonstrate support, which in turn is influenced by acceptance, cohesion, and problem solving ability. Furthermore, studies examining family characteristics and adjustment in families with a child with LD point out the importance of family support and cohesion for successful outcomes in the children (Feagans et al., 1991, Jain, 1990). Morrison and Cosden (1997) indicate that family support and cohesion are important factors for parent–child interaction in families with a child with special needs.

Few studies have examined the family climate or the perceived social support of children diagnosed with Asperger. For example, Carter et al. (2004) indicate that support is very important for parents, to allow them to be heard and to share personal stories, feelings, frustration, and expectations. Apart from receiving support in the sense of hope, parents also gather information about different intervention strategies with their child.

Given the research suggesting that families of children with disabilities differ in most aspects from families with NLD children, and that the Asperger disorder causes clinically significant impairment in social, occupational, or other daily functioning, we suggest that these disabilities may also have a significant effect on family functioning. For this study, we compare families with a child with Asperger syndrome, or with LD, to a control group. Based on the literature review and the DSM characteristics of children with Asperger or with LD, children with LD have, in particular, obstacles in the academic areas, such as reading, writing, or calculating, and children with Asperger exhibit significant deficiencies in skills involving translating social cues and communication. Children with LD may also have significant difficulties in social and/or emotional areas. However, children from both groups have a normal range of intelligence, and are included in mainstream classes.

In summary, the present study differs from, and extends, the existing literature on parents of children with LD and Asperger syndrome, by investigating such family factors as relationships and the social support patterns of the parents, compared to a control group. The study examines the following hypotheses concerning the effect of disabilities on the family system and the parents’ perceived support.

  • 1.

    Family environment will differ in families with and without disabilities. Specifically, measures of expression and independence will be higher in families without disabilities, while the levels of control and organization will be higher in families with a child with a disability. It was anticipated that no differences would emerge for achievement of family members across the groups.

  • 2.

    Parents of children with Asperger will report significantly higher on family environment subscales related to independence, control and organization affiliation than will parents of a child with LD.

  • 3.

    As Asperger syndrome is a rarer disability than LD, and parents are usually less familiar with Asperger syndrome, it was anticipated that parents of a child with Asperger will need more support from family members or friends compared to parents of a child with LD. Therefore, differences in social support aspects will emerge between parents who have, and those who do not have, a child with Asperger syndrome.

Section snippets

Participants

The sample consisted of 121 parents divided into 3 groups: 33 parents with a child with Asperger syndrome, 43 parents with a child diagnosed with LD, and 45 parents with a child without any specific diagnosis (ND), as a control group. All the children lived at home with their parents, and studied within a mainstream school. The parents’ groups were closely matched in terms of number of children living at home, the child's age and sex, parents’ age, and the parents’ social background and

Family environment

SPSS for Windows 14.0 was used for the statistical analyses. A one-way of multivariate analysis (MANOVA) was performed, with the parent groups as the independent variable and the three FES domains as the dependent variables. Significant differences were found between groups, F(2, 120) = 3.21, p < .05.

The following univariate analysis for FES subscales contributed to the significant differences for expressiveness, system maintenance domain and organization, as presented in Table 2. The parents of an

Discussion

The study aimed to examine the differences in family environment and relationships, and family social support as perceived by three groups of parents of a child with and without disabilities. The findings presented here enhance our knowledge and understanding of how, despite the various difficulties in raising a child with a disability, all parents tried to develop a routine life environment.

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