8

II. REVIEW OF RELATED LITERATURE

The number of children diagnosed with Autism Spectrum Disorder (ASD) increased dramatically
over the last 20 to 30 years !n this span of time" many research studies have been conducted regarding
children of ASD and their family and how they cope with the stress brought about by having a child with
a developmental disability !t has been reported that in these recent studies" ASD is the fastest growing
developmental disability As of 200#" almost $% million children have been diagnosed with ASD in the
&nited States Similarly" in the 'astern part of the world" specifically the (hilippines" ASD has been
reported to increase appro)imately %00"000 in number as of 20$0 (*yons et al" 20$0)
Together with the rapid increase of numbers of children with ASD comes the rapid increase of
parents who e)perience stress in raising their children The family" especially the parents" plays an
important role in the development of the child with ASD (arenting children with autism poses a number
of challenges and difficulties +linical psychologists" speech therapists" occupational therapists"
behavioral and developmental professionals and other individuals who speciali,e in the field of Autism
Spectrum Disorder believe that there are several factors that contribute to the parental stress (isula
(20$0)" stated that there are certain problems that burden the parents of children with ASD- namely" the
fears for their children.s future" prompted by the fact that this disorder significantly reduces their chances
of independence- disapproval of the child.s behavior as demonstrated by others" often family members"
and very limited social support /ther sources of stress include difficulties in communicating with the
child and behavioral problems seen in most children with autism
According to (isula (20$0)" parents e)perience more stress not only compared with parents of
typically developing children" but also compared with parents of children with other developmental
disabilities This notion has been strengthened by *yons (20$0) that parents of children with ASD report
higher levels of parenting stress when compared to parents with typically developing children and parents
of children with Down syndrome
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+hildren under the scope of ASD and other developmental disabilities have challenges that results
to the stress of parents affecting their physical and psychological well being" however" challenges within
the spectrum can be different due to the uni0ueness of each disability 1ost of the problems manifested
by a child with ASD has more language deficit" is much less socially responsive" has more behavior
problems and has more unevenness in intellectual s2ills (*ee" 2003)
!n a related study" *ee (2003) however states that 4igh 5unctioning Autism Spectrum Disorder
(45ASD) is characteri,ed by two primary areas of deficit6 social interaction and restricted and
stereotyped patterns of behaviors 4e further noted that similar to autism" deficits in social interaction
include ga,e avoidance" failure to develop normal peer relations" failure to spontaneously share
en7oyment" interest" achievement" lac2 of social reciprocity" restricted and stereotyped patterns of
behavior ')amples of these stereotyped patterns of behavior are narrow interests or ob7ects" stereotyped
motor mannerism" rigid adherence to nonfunctional routines as well as the ability to infer the internal
mental states of others8identifying feelings associated with facial e)pression
Stress on the Parent
5amilies in distress or a family of children with autism (+9A) is often correlated with serious
discord" depression and financial problems These are the manifestations of chronic stress among families
The high stress levels shown" particularly on mothers shows that they have more e)cessive time demands"
poor health" depressed moods and pessimism about the child.s future :ut despite the different stresses
that they face" families of children with autism are coping and ad7usting (5oronda" 2000)
1ost single parents e)perience stress associated with the characteristics of +9A !n the result of
the study of 5oronda (2000)" the more common characteristics that surfaced in relation to stress are
communication" psychosocial" psychomotor" degree of dependence and intellectual achievement These
are the main stressors or everyday stresses that mothers and fathers e)perience everyday
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Communication !n a related study" results have shown that echolalia8the repetition of
words;phrase and immature language was the most stressful to the respondents (5oronda" 2000) !t is also
problematic when children diagnosed with ASD cannot communicate their needs effectively (/livier and
4ing" 2003)
Psychosocial !n most of the studies" tantrum behavior was among the most stressful
psychosocial characteristics among individual parents and single parents /thers include inappropriate
laughing" lac2 of fear or real danger" self<stimulation" running away" grabbing" resistance to change"
aggression" e)cessive fear of harmless ob7ects" does not play with others" self<in7ury" indifference or aloof
towards others and disinterest in physical contact (5oronda" 2000) The characteristics stated above is an
early detection used by specialist to tell if a child is really autistic
Psychomotor 4yperactivity tops it all as the most stressful psychomotor characteristic in child
with ASD (5oronda" 2000) &sually parents cannot manage this 2ind of behavior as hyperactivity can lead
to aggressive behavior
Deree o! "e#en"ence +hildren of such cases with ASD should be guided and be assisted by
parents 1ost of the tas2s are usually done by the mother because it is the father that provides the
financial needs but in some cases" they hire a caregiver or leave them with relatives because either both of
them wor2 !t is more stressful on the part of the parents because an autistic child cannot ta2e care of
themselves They need constant care and guidance when it comes to grooming and personal hygiene
(5oronda" 2000)
Intellectual achie$ement (oor participation in learning situations and short attention span in
their child with ASD is also a problem to both parents !t creates stress on their part (5oronda" 2000)
4owever in one study" it helps in reducing stress if particular attention is given to improve the
communication between family members (arents are encouraged to learn their child.s uni0ue ways of
communicating (:arnett" +lements" =aplan<'strin and 5ial2a" 2003)
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Other stressors. /ther general sources of stress according to 5oronda (2000) that responded in
her study were financial difficulties" concern for the future" e)cessive time demands" lac2 of community
awareness on autism and ta2ing on several roles
Co#in an" Co#in Strateies
9ith these different types of disabilities" parents are able to handle the stressors more effectively
than others despite the adversities e)perienced by them 9hen parents are more active and prefer to
advocate for themselves and see2 options wherein they can have better control over the stressful
situations" they tend to be more effective when it comes to these 2inds of coping strategies Co#in%is
defined as how one deals with stressful situations !t often mediates on how well one can ad7ust during
stressful situations (*ee" 2003)
Active coping according to *ee (2003) has been found to be an effective intervention for families
of children with autism !t is found out that active coping style was associated with positive child health
outcomes for children with autism !t also indicated that mothers and fathers adopted different coping
styles in order to deal with the different stressors in raising a child with autism
1oreover" it is found out that there is a higher ris2 of stress and elevated levels of an)iety and
depression for both fathers and mothers when active avoidance coping was implied /n the other hand"
positive coping especially positive reframing was associated with better mental health in both genders
(*ee" 2003)
Co#in strateies "e!ine". +oping strategies are used by parents in order to deal with stress and
the different stressors that they have" upon 2nowing at first point the condition of their child having ASD
They use a variety of strategies in dealing with their child (>ray" 200#) There are various coping
strategies implied by parents as they start to adapt and accept the condition of their child
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>ray (200#) suggests the following6 family support" social withdrawal" religion" individualism"
use of treatment services" and other factors that help the parents in coping for the stress that they incur
Family support. 5amily support is important for a child having ASD !t is crucial for the parents
as it is their main source of strength to lighten the burden that they carry 4owever" this 2ind of strategy
suggests that it declines over time as the parents habituate due to many coping strategies that they apply
(>ray" 200#) The researchers have defined some variables that can be attributed to the habituation of
parents in coping with the stresses that they undergo through time
The time spent away on children can be one of the factors Some parents may have developed
learned helplessness or a sense of hopelessness overtime and perceives no control over repeated bad
events (1yers" 20$0)
5inancial capability is also one of the crucial supports needed by the parents in order to sustain
the best possible treatment to temporarily cure the child 1any studies have a consensus that as of the
moment" ASD has no cure ?evertheless" the scientific community is finding ways to search for possible
treatment by conducting e)tensive research to find a cure for this disorder
Social withdrawal. The acceptance of their child.s condition is reflective of their daily activities
through time Since some parents start to accept the condition of their child" they start to change some of
their activities and focus more on the things that need to be ta2en care of As a result" the sociali,ation of
parents may differ from the first time they 2new of the condition of their child and it declines over time
They start to be accustomed to the restrictions imposed upon them (>ray" 200#)
Religion. !n the 5ilipino society" religion has played a large part on the values formation of the
populace According to >ray (200#)" the parents ma2e it as their main coping strategy 4owever there is a
decline in the use of treatment services because there is acceptance by the parents that their child.s earlier
e)pectation will not be fulfilled They also ac2nowledge the permanence of their child.s condition and
13
find a way to thin2 about it in a meaningful perspective !t can be e)plained through @i2tor 5ran2l.s
A1an.s search for meaningB wherein you find meaning in every suffering (5eist C 5eist" 20$0)
Individualism. The parents are the ones who provide financial support needed by their child and
the ones who give the social support to their child (arents thin2 of the future of their family and give the
basic support system and so they thin2 for their own welfare than others This can be e)plained by =aren
4orney.s theory on the neurotic trends of moving away from people This strategy is an e)pression of
needs for privacy" independence" and self<sufficiency and each of these needs can lead to positive
behaviors" however" these needs become neurotic when people try to satisfy them by compulsively
putting emotional distance between themselves and other people (5eist C 5eist" 20$0)
Use of treatment services. !n schools such as the Tacloban +enter for Autism" they offer the best
and special services that they can give to the child with ASD The use of treatment services is important
as most children are still young and need the basic s2ills training !t has also provided parents as an
alternative to use the counseling services provided by the staff >ray (200#) suggests that the use of
treatment services declined dramatically because state schools can already offer programs similar to
centers for ASD 5urthermore" instead of focusing on children with autism or ASD" these centers have
offered other programs such as Asperger.s syndrome leading to the smaller number of parents enrolling
their child diagnosed with ASD in special schools
Others. Delationship and support from other family members and other people is an important
coping strategy for some parents Some of the support that other families give is emotional in nature
They are one of the strongest support systems that others cannot provide /ther support systems also play
an important role- these could be friends of the family and neighbors /n the other hand" the society.s
view on children with autism may change their treatment and be enlightened because of conformity or the
change of one.s behavior or belief as a result of group pressure (1yers" 20$0)
14
Family system co#in strateies 5amilies with a child diagnosed as having ASD are e)posed to
stressors from internal sources within the family and from e)ternal sources when advocating for health"
social" and educational services for the child +ommon behaviors li2e repetitive behavior" withdrawal
behavior and misbehavior 5amilies may find it hard to deal with them which ma2es social outings for
families with a child with ASD difficult Also" it adds up to the stress of the family if there is lac2 of
understanding from the community 5amilies of children with ASD have restricted level of contacts with
the community because family" friends" teachers and the community do not understand the behavioral
characteristics of children with ASD (+onnolly" ?ova2 C Twoy" 200E)
+onolly et al (200E) suggests that managing the demands of the stressors is vital because the
outcome can escalate to unmanageable levels or crisis !t has the ris2 of suffering from the psychological
distress and depression There are also differences in the types of coping behaviors employed 9ith these
conditions" the family needs a strong support system from relatives" friends and even neighbors because
social support could buffer the negative effects of marital stress on the sibling relationship !t will also
illustrate higher 0uality of sibling relationship
Internal family coping strategies. The level of successful adaptation comes from within the
family such as relationship" cognitive and communication strategies (+onnolly et al" 200E) The internal
harmonious relationship in the family helps them in reducing the stress that they e)perience !t boils down
to communication among the members of the family especially the mother and the father 9hen it comes
to decision ma2ing" the parents should be at the same wavelength and be supportive of each other There
are times when parents cannot agree on the decisions that they ma2e which might escalate and create
distress from within
External family coping strategies. This type of strategy comes from resources outside of the
family 5amilies might rely on support from their community" social contacts" or social networ2s and
spiritual support to modulate their coping (+onnolly et al" 200E) Special schools catering to the needs of
15
children with ASD and other developmental disabilities are e)amples of the support system that parents
can get e)ternally The family cannot do it alone in their homes as they need social contacts outside
!t is e)pected that a family that employs both internal and e)ternal levels of interaction will adapt
to stressful events more successfully Also some studies suggests that the parents of children with ASD
are resilient in adapting to the challenges of caring and raising their child with autism &sing social
support systems within the family.s social networ2 was a large part of the e)ternal family<coping
strategies /thers also see the stressor as a fact of life and were able to define the stressor in a more
positive way so that they could find solutions to the problems and not be discouraged (+onnolly" etal"
200E)
!n general the high stress levels shown by parents" particularly mothers shows that parents having
+9A have more e)cessive time demands" poor health" depressed moods and pessimism about the child.s
future compared to parents of typically developing children They have various concerns regarding their
child.s well being such as" communication" psychosocial s2ills" psychomotor s2ills" degree of
dependence" and intellectual achievements Despite the different stresses that they face" families of
children with autism are coping and ad7usting There are various coping strategies implied by parents as
they start to adapt and accept the condition of their child Some e)amples are the following6 family
support" social withdrawal" religion" individualism" use of treatment services" and other factors that help
the parents in coping for the stress that they incur
There are numerous researches that focus on the coping of parents of +9A but only a few focus
on Asian countries Since ASD is the fastest growing developmental disability in the world more and
more parents are going to need help on how to handle +9A