Autism's impact on parents and siblings: effects and family challenges

Autistic Children and the Effect on the Family

AUTISTIC CHILDREN and the EFFECTS on the FAMILY

Autism is a disease that has a major impact upon the family of the child with this disorder, which include emotional, functional, social, financial, as well as others, which will be related in this study. The precise cause of Autism is not known however, researchers are examining the genetic and environmental causes and some state a belief that autism is likely a disorder that is biologically based. However, recently there have been reports, which address the potential of vaccines to cause this disorder as the number of children diagnosed as being Autistic has increased over recent years. Behavioral modification is the most prominent form of treatment being utilized presently to treat this disorder. Symptoms associated with Autism include: (1) trouble forming relationships; (2) difficulty understanding or responding to emotional signals from others; (3) using language creatively and receptively; (4) self-absorption; (5) repetitive, self-stimulatory behavior, such as staring at an object; (6) repeating words over and over again; and (7) repetitive motor movements. (Greenspan, 2008)

The study entitled: "Parents of Autistic Children Twice as Likely to be Mentally Ill" reports an "analysis of Swedish birth and hospital records" in a study which examined 1,237 children "born between 1977 and 2003 that were diagnosed with autism before age 10, and compared them with 30,925 control subjects who were matched by gender, year of birth and hospital…" (Fox News, 2008) the study attempted to determine "whether autism is more common among families with other psychiatric disorders." (Fox News, 2008) This study states findings that parents who were diagnosed with schizophrenia "were about twice as likely to have a child diagnosed with autism." (Fox News, 2008) Also reported were 'higher rates of depression and personality disorders among mothers, but not fathers." (Fox News, 2008) Coping of the parents of children with developmental disabilities are challenges "not shared by parents of typically developing children. There is however, substantial evidence that challenges parents face and the way in which they deal with these challenges vary with the nature of the child's disability." (Abbeduto, et al., 2004, p. 237)

I. EFFECTS on PARENTS & SIBLINGS

Research findings show that parents of children with autism "show deficits in social interaction in a general sense, while others have shown elevations in personality characteristics that lead to impaired social skills. Other research has indicated a higher prevalence of psychiatric disorders in parents of children with autism, including bipolar and other affective disorders than the general population." (Seltzer, and Krauss, and Orsmond, 2001, p. 271) Also stated are research findings on siblings of children with autism, which parallels "some of the findings on paternal characteristics." (Seltzer, Krauss, and Orsmond, 2001, p. 271) Stated is that Bolton et al. (1994) "found higher rates of social deficits in siblings of individuals with autism…" (Seltzer, Krauss, and Orsmond, 2001, p. 271) the work of August et al. (1981) states findings that "cognitive disorders (including disorders of speech, reading, spelling, language and mental retardation) were more prevalent in siblings of t children with autism compared to a support group of siblings of individuals with Down's Syndrome." (Seltzer and Krauss, and Orsmond, 2001, p. 272)

Seltzer and Krauss, and Orsmond, in the work entitled: "Families of Adolescents and Adults with Autism: Uncharted Territory (2001) state that only a very few disorders in children "pose a greater threat to the psychosocial well-being of family members than autism." (2001, p. 273) the reasons this is held to be true include: (1) autism is a relatively rare disorder, obtaining an accurate diagnosis is often the culmination of a long and protracted evaluation; (2) the behaviors of children with autism are often extremely difficult to manage, and include temper tantrums, obsessional interests, and in some cases, self-injury; (3) the public's understanding of and tolerance for the aberrant behavior of children with autism is low. (Seltzer and Krauss, Orsmond, 2001, p. 273) the result of the Autistic child's behavior may be social isolation and a wariness concerning participation in public events for the family of the child. Additionally, the parent-child relationship suffers stress due to the "impairments in language and social skills that are among the core deficits of Autism." (Seltzer and Krauss, 2001, p. 273)

In a report entitled: "Autism Spectrum Disorders: Best Practice Guidelines for Screening Diagnosis and Assessment" it is related that "early identification" of Autism "is essential for early therapeutic intervention and leads to a higher quality of life for the child and family." (Autism Spectrum Disorders: Best Practice Guidelines for Screening, Diagnosis and Assessment, 2002) a number of studies on early intervention outcomes in Autism "have delineated the benefits of early intervention…" (Autism Spectrum Disorders: Best Practice Guidelines for Screening, Diagnosis and Assessment, 2002) Stated as a primary benefit of early intervention is "the positive impact on the family's ability to interact in a developmentally appropriate manner with their child and to have a greater understanding of the disability and how it interacts with family life." (Autism Spectrum Disorders: Best Practice Guidelines for Screening, Diagnosis and Assessment, 2002) Early diagnosis is stated to result in the enhancement of the "opportunity for effective educational and behavioral intervention; reduction of family stress by giving the family specific techniques and direction; and access to medical and other supports." (Autism Spectrum Disorders: Best Practice Guidelines for Screening, Diagnosis and Assessment, 2002)

The work of Connor (2002) entitled: "An Autistic Child in the family" reports the fact that a "range of studies has shown that having a brother or sister with a developmental delay or disability will have significance for ht progress and well being of both the normally developing child and the child with the disability. The presence of a child with a condition such as autism carries potentially both positive and negative effects for the sibling(s), but the outcomes will be influenced by other family factors notably the management style of the parents." (p.1) Stated to be determinants are:

(1) Birth order;

(2) Sibling gender;

3) Severity of the disability; and

4) the socio-economic status of the family.(Connor, 2002, p.1)

Connor relates that the study of Simeonsson and McHale (1981) related how the parental time and attention directed towards the child who is disabled "may arouse the feelings of jealously or resentment among other children of the family or increase existing feelings…exacerbating general familial stress." (2002, p.1) Connor also relates the study of Powell and Ogle (1985) who stated findings that "the presence of a child with special needs may frequently involve siblings in direct care giving activities and their devoting time to supervising or entertaining their brother or sister." (2002, p.1)

Connor also relates that Powell and Gallagher (1993) examined the common concerns and anxieties among children with autistic siblings and identified six categories:

(1) Concern for the child with the disability;

(2) Concerns linked to parents, which included the expectation differences in relation to their behavior as compared to that of their sibling;

(3) the child's own feelings;

(4) Concerns about the attitudes of their peers;

(5) Community issues; and (6) Future problems in their adult lives including financial responsibility, guardianship and other issues related to the sibling who is disabled. (Connor, 2001, p.1)

Miller (2001) reports that normally developing children in the family with a child with autism tend to have excessively high expectations for the normally developing child which induces stress in the life of the child. Specifically stated is "As increased demands in respect of child care were experienced, there may be an increased conflict between the siblings and the child with special needs, reflected in anger and resentment, but also in guilt." (in Connor, 2002, p.1)

Harris (1994) stated findings concerning the brothers and sisters of children with autism which include: (1) the need for information about the nature of autism; (2) the need for respect and to be treated as individuals as opposed to being identified as the brother or sister of the autistic child; (3) the need to learn specific social and communication skills in order to be able to increase the amount and quality of interaction with their autistic sibling; and (4) the desirability of having opportunities to share feelings and experiences with other children and young people who have a sibling with autism. (Connor, 2002, p.1)

Connor relates that the study of Kaminsky and Dewey (2002) conducts a review of the existing studies relating to the adjustment of siblings of children with Autism and state that the Autistic child "may engage in behaviors with appear aggressive or impulsive or obsessive and which can have a disruptive effect upon family life." (2002, p.1) the Autistic child's difficulties relating to communication as well as the anxiety "surrounding public contact and family outings, may present further challenges not only to parents but to the siblings of a child with autism." (Connor, 2002, p.1) Gold (1993) stated findings that siblings of children with Autism were stated to have been found to have: "…higher levels of self-reported depression." (2002, p.1) Connor (2002) states that studies report findings that mothers of children with Autism "who showed greater satisfaction" in life were those "who made the clearest redefinitions and who were most willing to follow alternative ways of gaining self-fulfillment." (p. 1)

III. ADAPTING and COPING STRATEGIES

Parents and children in families with autistic children must necessary develop skills and strategies for coping with Autism in the family. For parents this means strategies and skills associated with care giving and in assuring that, the parents get sufficient sleep as the child with Autism may not sleep at night well. Social support has been identified in a variety of studies as being key to the adjustment of families with an autistic child. In fact the study of McCubbin and Patterson (1981, 1983) proposed what is known as the 'Family Adjustment and Adaptation Model' and findings show that "family adaptation was predicted by the adequacy of social support." (Seltzer, Krauss, and Orsmond, 2001, p. 277) Findings stated include that the "severity of the child's condition was not a significant predictor of family adaptation, but was a predictor of marital adjustment. Unexpectedly, the more severely impaired the child, the 'less adverse' the effect on the marriage." (Seltzer, Krauss, and Orsmond, 2001, p. 277) Stated as risk factors for poor adaptation were "having a pile-up of other life stressors, maternal self-blame, and defining have a child with a handicap as a family catastrophe, suggesting that the parental appraisal of the situation is a greater factor in adjustment than are the specific care giving stresses presented by the child." (Seltzer, Krauss, and Orsmond, 2001, p. 277)

FINDINGS

Findings of this study include that there are most assuredly impacts upon the family of the child with Autism, which include but are not limited to social, physical, financial, emotional, intellectual, as well as other effects. The family of the child with Autism is required to make daily adjustments and adaptations in developing skills and strategies that are most effective in coping with the autistic child as that child develops and becomes integrated with the social and educational systems within the community. The better social support is able to meet the needs of these families the better the outcomes will be for these families.

SUMMARY & CONCLUSION

This study has found that the needs of the family of the child with autism include a high level of social support to assist them in coping with the challenges associated with having an autistic family member. Much more in the way of resources and research should be applied in this area of study to determined the 'best practice' provision of social support in assisting families of children with Autism.