Schieve and colleagues (2007) define autism as a neurodevelopment disorder characterized by considerable impairment in communication and interactions, as well as unusual stereotyped behavior in children below the age of 3 years (p. 114). Manning, Wainwright and Bennet (2011) argue that children with autism are faced with a big challenge because of the nature of the symptoms the disorder. The same case also applies to their parents and caregivers (p. 320).
Bleuler coined the word “autism” in 1911, while Leo Kanner published the first clinical report on autism in 1973. In his report, Kanner sought to shed light on the cause of autism and how it affects the behavior of children. The report examined eleven male children who had unusual but similar behavior patterns.
The children also demonstrated the desire to remain alone. Over the years, numerous studies involving children with autism as the subjects have been conducted and the research findings have allowed researchers to uncover other similarities shared by children with the same condition. Some of these symptoms include the inability to imitate what others speak, failure to acknowledge the presence of others, the ability to line up or stack objects endlessly, and the ability to memorize trivia (Hall & Graff, 2011, p. 6).
The cause of autism is not known yet and researchers are trying to identify whether the disorder is due to a single cause or multiple causes. However, if a child within a family is diagnosed with autism, the chances for another child in the same family to be diagnosed with autism increases by between 2 and 8 percent (Hall & Graff, 2011, p. 6).
Even as professionals and researchers try to identify the cause(s) of autism, we need to help children who have already been diagnosed with autism and their families as well. Since autism is incurable, its diagnosis might bring about serious problems to the family affected. In addition, it can cause a crisis among members of the society. Research indicates that early diagnoses and suitable intervention affects children diagnosed with autism positively and as a result, they can be assisted to master various adaptive behaviors.
One in every 110 Americans is thought to have Autism Spectrum Disorder (ASD). This means that 2.8 million Americans have already been diagnosed with ASD (Johnson, Frenn, Feetahm & Simpson, 2011, p. 2). In the last 20 to 30 years, we have witnessed a considerable increase in the number of Autism Spectrum Disorder diagnoses. As Lyons (2010) reports, for every 1000 children, 6.7 are diagnosed with ASD.
The diagnosis of ASD involves the use of the DSM-IV diagnostic criteria. Before a child is diagnosed with autism, he/she should manifest qualitative impairments in communication, social interaction, repetitive, restricted, and stereotypes patterns of activities, behaviors, and interests (Johnson et al, 2011, p. 2).
ASD collectively refers to three Pervasive Developmental Disorders, namely Pervasive Developmental Disorder, Autistic Disorder, and Asperger’s Syndrome (Johnson et al, 2011, p. 2). The three disorders are characterized by different symptoms that also differ in terms of severity. In this case, autistic Disorder tends to be the most severe of the three disorders. On the other hand, Asperger’s Syndrome (otherwise referred to as functioning autism) is the least severe.
Impact of Autism on the family
Families of autistic children are faced with unique stressors, in comparison with families in which the children develop normally (Manning et al, 2011, p. 321). For instance, the communication and social deficits of an autistic child can affect the ability of a family to build relationships and interact in conventional ways. Besides these core benefits, children with autism may also manifest serious behavioral problems such as aggression, self injury, and tantrums (Manning et al, 2011, p. 321).
These symptoms can be a challenge to family members. Moreover, children with autism demonstrate a preference for routine and constancy, and this could disrupt or restrict family activities. In addition, it can also prevent such families from participating in such non-routine activities as holiday activities, birthday parties, and community outings (Manning et al, 2011, p. 2).
As a result of these challenges, families with autistic children may end up isolating themselves socially from other families with non-autistic children. Such isolation may result in increased depression and low self esteem among the parents of an autistic child. Autism does not present with a clear etiology and as such, family members of children characterized by developmental disorders tend to report greater stress (Browska & Pisula 2010, p. 267).
Also, an autistic child may appear “normal” physically while the symptoms hidden in therein. Majority of the autistic children normally appear to be very attractive and as such, an outside observer may not be able to realize that such a child suffers from a disability at first glance.
Impact of child’s autism symptoms on parental psychological wellbeing and stress
As symptoms of autism increase in severity, there is a corresponding effect on parental psychological well-being and stress. Already, some scholars are involved in a heated debate on whether the high parental stress levels are due to the primary symptoms of autism or the behavioral problems associated with the disorder.
A number of studies have demonstrated that the behavioral problems manifested by autistic children are indicative of maternal stress, and not the severity of the disorder or the associated adaptive behaviors. In contrast, other scholars predict that there are many difficulties associated with the process of examining parental stress after a child has been diagnosed with autism.
For example, ritualistic and self-isolated behaviors are linked to poor parental outcomes, holding any external behaviors constant. One of the mechanisms used by parents of an autistic child to cope with the stress is the adoption of coping strategies. In this case, coping entails managing the internal and external demands as a result of having to deal with an autistic child.
Furthermore, the unique challenges facing parents of children with autism can at times take a toll on a marriage. Empirical research is yet to address the extent to which a family coping with an autistic child may lead to divorce, although speculation in the media projects divorce rates of as high as 80 percent (Hartley et al, 2010, p. 449).
Parents taking care of children with ASD have been seen to fare worse in comparison with parents taking care of children with other forms of disabilities. This is due to a number of factors including the long-term prognosis that characterizes individuals with SAD, and uncertainly of the diagnosis. In addition, autistic symptoms, along with the associated behavioral problems tend to be stressful in nature.
There appears to be limited research on the coping strategies used by parents of children diagnosed with ASD. Nonetheless, a number of studies have dwelt on the moderating effects of coping. Several studies have shown that problem focused coping is indicative of reduced psychological distress (that is, spousal relationship difficulties, and depressive symptoms). On the other hand, emotion-focused coping is indicative of psychological distress (Lyons, 2010, p. 2).
In addition, distancing (for example, trying to forget the problem, moving on oblivious of what has happened, and joking about the situation) may also increase depression among parents. Moreover, emotional regulation coping and distraction are linked to reduced negative mood levels, while elevated levels of negative mood are indicative of worrying, problem focused blaming, and withdrawal coping (Lyons, 2010, p. 3).
Providing social support, well-being and optimism to mothers of children with ASD
Parents of children with ASD encounter many challenges, such as when seeking for a diagnosis, searching for suitable educational programs and treatment, and having to cope with the financial burden that comes with the disorder.
On account of coping with the aforementioned challenges while bringing up a child with ASD, many parents report reduced overall well-being and higher levels of depression. Providing such parents with social support is reported to reduce the associated negative psychological effects significantly.
Specifically, informal social support such as the one provided by family and friends is reportedly very effective especially with the mothers of children with ASD, in that it helps to reduce stress. For instance, mothers who receive a lot of support from spouses, family and friends while taking care of children with autism report fewer marital problems and reduced levels of depression.
Mothers who receive social support from their friends also demonstrate positive affect, increased life satisfaction, and psychological well-being. On the other hand, support form a partner is may lead to increased psychological well-being and life satisfaction.
Moreover, social support provided for my members of the family is only associated with increased psychological well-being (Ekas et al, 2010, p. 1282). Ekas and colleagues have further noted that increased optimism leads to reduced negative outcomes and enhanced positive outcomes.
Browska, A., & Pisula, E. (2010). Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome. Journal of Intellectual Disability Research, 54(3), 266–280
Ekas, N. V., Lickenbrock, D. M., & Whitman, T. L. (2010). Optimism, Social Support, and Well-Being in Mothers of Children with Autism Spectrum Disorder. J Autism Dev Disord, (2010) 40:1274–1284
Hall, H. R., & Graff, J. C. (2011). The Relationships Among Adaptive Behaviors Of Children With Autism, Family Support, Parenting Stress, And Coping. Issues in Comprehensive Pediatric Nursing, 34:4–25
Hartley, S. L., Barker, E. T., Seltzer, M. M., Floyd, F., Greenberg, J., Orsmond, G., & Bolt, D. (2010). The Relative Risk and Timing of Divorce in Families of Children With an Autism Spectrum Disorder. Journal of Family Psychology, 24( 4), 449–457
Johnson, N., Frenn, M., Feetahm, S., & Simpson, P. (2011). Autism Spectrum Disorder: Parenting Stress, Family Functioning and Health-Related Quality of Life Families, Systems, & Health. Families, Systems, & Health, 29(3), pp. 232- 252.
Lyons, A. M., Leon, S. C., Phelps, C. E., & Dunleavy, A. M. (2010). The Impact of Child Symptom Severity on Stress Among Parents of Children with ASD: The Moderating Role of Coping Styles. J Child Fam Stud, 19: 516–524
Manning, M. M., Wainwright, L., & Bennett, J. (2011). The Double ABCX Model of Adaptation in Racially Diverse Families with a School-Age Child with Autism. J Autism Dev Disord, 41: 320–331
Schieve, L. A., Blumberg, S. J., Rice, C., Visser, S. N., & Boyle, C. (2007). The Relationship Between Autism and Parenting Stress. Pediatrics,119, S114- S 120.