Nama : Dedi
Mulyana
NIM : 1136000028
Analisis jurnal
internasional tentang autism
Judul :
Tantangan yang dihadapi keluarga anak autis
Latar
belakang
Spectrum Disorder Autisme (ASD)
adalah gangguan neurologis yang kompleks yang mempengaruhi fungsi otak dan
biasanya muncul dalam tiga tahun pertama kehidupan. Hal ini menyebabkan
gangguan di beberapa bidang termasuk interaksi sosial, komunikasi, dan
perilaku. Keuarga yang mempunya anak dengan keadaan autis mempunyai tantangan
dan berpengaruh pada ruang lingkup keluarga, interaksi sosial dan hal yang
lainnya sehingga keluarga yang mempuyai anak dengan autis menghadapi beberapa
tantangan.
Tujuan
Untuk mengidentifikasi tantangan-tantangan dan masalah
yang dihadapi yang mempunyai anak-anak autis. Stres yang arang tua anak autis,
keuangan, dan saudara anak autis, penyesuaian pernikahan dan pola asuh yang
diterapkan.
Subjek
Karena penelitian ini study
literatur jadi tidak ada subjek penelitian.
Hasil
-
Stres orang
tua dalam keluarga anak autis
Orang tua
dengan anak autis mengalami stres terutama ibu dibandingkan ayah. Stres yang
dialami ialah autis tidak memiliki keterangan bilogis dan stres karena ditandai
dengan masalah interaksi sosial sehingga sulit untuk berinteraksi dengan
lingkungannya kemudian kehilangan kontrol, juga pernah terdiagnosis depresi,
dunkungan suami-istri dan rasa tidak percaya diri muncul.
-
Pengasuhan
anak autis
Pengasuhan
pada anak autis harus mendapat dukungan dari semua pihak, seperti tetangga,
keluarga dan lingkungan sekutar agar orang tua yang mempunyai anak autis tidak
terlalu stres. Orang tua mengajarkan beberapa hal seperti komunikasi,
keterampilan dasar, mempersiapkan untuk masa dewasa dan menghindar dari bahaya.
Kemudian orang tua mendatangi profesional agar setidaknya dapat membantu
mereka.
-
Saudara dari
anak autis
Saudara dari
anak autis harus menyesuaikan diri dalam bertingkah laku karena anak autis
tidak sama dengan anak lainnya karena dapat mempengaruhi kepribadian mereka.
Saudara dari anak autis juga berisiko menanggung beban emosial dan psikologis
juka bergaul dengan mereka.
-
Stres
keuangan keluarga dengan anak autis.
Kondisi
keuangan yang dihadapi kaluarga memang sulit jika memiliki anak yang autis,
karena pengobatan atau intervensi untuk menyembuhkan autis terbilang cukup mahal,
pendidikannya pun mahal karena berbeda dengan anak lain. Kemudian juga obat
yang dikonsumsi dan hal-hal yang lainnya yang diperlukan anak autis dapat
menghaiskan banyak uang.
-
Tantangan
pernikahan
Banyak hal
yang dialami oleh orang tua dengan anak autis, ibu kurang tidur karena harus
lebih ekstra dalam mengurus anak autis sementara ayah sibuk mencari uang untuk
biaya anaknya sehingga rumah tangga menjadi tidak harmonis sehingga akan rentan
mengalami perceraian, karena pasangan cendrung ingin memiliki anak yang normal.
Penelitian
selanjutnya
Tertarik memang jika berbicara
tentang anak yang mengalami gangguan autis karena tumbuh kembangnya berbeda
dengan anak lainnya. Penelitian ini membuat kita tertarik agar dapat menjadi
meleniliti lebih lanjut dan lebih detail, misalkan dengan metode kuantitatif
atau kualitatif, dengan menggambarkan statistik perceraian dari pasangan yang
mempunyai anak autis lalu juga mungkin dengan meneliti lebih dalam dengan
beberapa subjek anak autis, atau mungkin bisa menggambarkan hubungan anatara
saudara yang autis dengan yang tidak. Masih banyak hal yang dapat diteliti
lebih lanjut.
Vol. 2,
Issue 1, pp: (64-68), Month: January-March 2014, Available at: www.researchpublish.com
Challenges Faced by families of
Autistic Children
Aadil Bashir1, Unjum Bashir2, Afifa Lone3, Zahoor ahmad4
1Assistant Professor,
Department of Social Work, University of Kashmir, India. 2Assistant
professor, Department of Management studies, IUST, Jammu and Kashmir, India
3Research Associate,
Department of Social Work, University of Kashmir, India. 4Research
Scholar, Department of Social Work, University of Kashmir, India.
Abstract: Autism
Spectrum Disorders (ASD) is a complex neurological disorder that affects brain
function which causes impairments in multiple areas of development
including social interaction, communication, and behavior and typically appears
within the first three years of life. Families having children with ASD face
many challenges as the disorder is associated with disruptive antisocial
behavior. Parents with ASD children face extreme difficulties in dealing with
challenging behaviors, teaching their child to communicate, teaching basic life
skills, guarding their child from danger, and preparing their child for adult
life. Besides, such families also experience high levels of stress, high recurrence
risks, misconceptions and assumptions, feeli stigma attached to the disorder
causes lot of discrimination not only of the autistic child but also of the
family as a whole because the family
is seen to be a part of the illness. The present paper highlights the major
challenges and difficulties faced by parents having children with autism.
Keywords:
Autism Spectrum Disorder, families with ASD children,
challenges.
I.
Introduction
Autism Spectrum Disorders (ASD) is a complex
neurological disorder that affects brain function and typically appears within
the first three years of life. It causes impairments in multiple areas of
development including social interaction, communication, and behavior. These
are often referred to as the triad of impairment. The Center for Disease
Control (2012) reports, 1 in 88 children will be diagnosed with ASD: 1 in 54
boys, 1 in 252 girls (UNLV Center for Autism Spectrum Disorders
2012). ASDs are part of Pervasive
Developmental Disorders (PDD)
w
Disorder,
and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). Each of
the behaviors associated with ASDs may range from mild to severe. Some
individuals may have relatively good verbal skills and a minimal language delay
but significantly impaired social skills while others may be nonverbal or have
very little ability in communicating or interacting with others. People with
ASDs often do not take part in pretend play, face difficulties in initiating
social interactions, and engage in self-stimulatory behaviors (CDC 2007).
There is no medical test for ASDs and a
diagnosis is made after a thorough evaluation. The evaluation might include
clinical observations, parent interviews, developmental histories,
psychological testing, speech and language assessments, and possibly the use of
one or more autism diagnostic tests (CDC 2007). The Diagnostic and
Statistical Manual of Mental Disorders (DSM-5) represents a new,
more accurate, and medically and scientifically useful way of diagnosing
individuals with autism-related disorders. Under the DSM-5 criteria,
individuals with ASD must show symptoms from early childhood, even if those
symptoms are not recognized until later. It encourages earlier diagnosis of ASD
but also allows people whose symptoms may not be fully recognized until social
demands exceed their capacity to receive the diagnosis. It is useful in
identifying school-aged children with autism-related disorders, as well as
diagnosing younger children (APA 2013). Autism is a neurodevelopment disorder
caused by a number of different known and unknown biologically based brain
dysfunctions
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that affect the developinginformation.Thebrain’sdifferentwayof
perceiving,abilityprocessingtoand interpretinghandl information, learning new
things and behaving in a well-adapted way, leads to the behavioral deviations
that can be observed (Zander 2004). Research suggests that both genes and
environment play important roles in causing Autism Spectrum Disorder (ASD),
(www.nimh.nih.gov).
Families with autistic children face a
multitude of challenges because of the behavioural problems associated with the
disorder. Having a child with autism in the family may have adverse affects on
various domains of family life including marital relationships, sibling
relationships and adjustment, family socialization practices as well as normal
family routines (Greeff and Walt 2010).
II.
Parental
stress in families with autistic children
Parents of disabled children are
particularly vulnerable to stress. The levels of distress are higher in mothers
than fathers of severely disabled children. Studies reveal that parental
distress and family functioning impacts children in numerous ways, affecting
their cognitive, behavioural and social development. Although there are many
other developmental disorders which present parents with ongoing grief, autism
is unique in several ways. First, this disorder has no clear biological marker,
unlike many other developmental disabilities. Second, because it is
characterized by problems of social interaction, such as forming attachments
and showing affection, parents of children with autism are often denied some of
the fundamental rewards of parenthood. Consequently, autism has been considered
as one of the most complex and intractable developmental disorders with which
families may have to cope. The common characteristics that contribute to
parenting stress, include scattered intellectual abilities or isolated skills
and pervasive problem behavior such as self-stimulatory behaviors. Other
important factors associated with parental stress in families of children with
autism, include, feelings of loss of personal control, absence of spousal
support, informal and professional support. Family members of children with
autism are often perceived to experience negative psychological effects which
may include higher risk for depression, social isolation and marital discord.
Many parents also experience periods of disbelief, deep sadness and depression
and self-blame and guilt whereas others experience helplessness, feelings of
inadequacy, anger, shock and guilt (Gupta and Singhal 2005).Specific stressors that
contribute to parental distress include concerns over the permanencyscondition,
poorof acceptancetheirof chi autistic behaviors by society and, other family
members and low levels of social support received by other parents (Prince
2007).Mothers appear to be the most affected and experience distress,
conflicting and even ambivalent emotions. Depression is
often elevated at the time of diagnosis of a child’sdisabilitybut may decline
substantially over time. Chronic sorrow and a sense of failure are emotional
states often reported by parents of autistic children (Kourkoutas et al 2012).
III.
Parenting
an autistic child
Autism is considered to be a severe
disability because of the intense lifelong effects it has on the individual and
his or her family. Parents raising a child with autism face extreme
difficulties in dealing with challenging behaviors, teaching their child to
communicate, teaching basic life skills, guarding their child from danger, and
preparing their child for adult life (Dyches et al 2004).There are high-risk
factors that might induce acute or chronic stress and trauma to the parents of
autistic children and, in turn, lead to dysfunctional parenting. These include:
a) theambiguity of diagnosis; b) the severity and duration of the
child’sdisorder;c) a very low I.Q.; d)lack of congruity with the community
norms, bizarre forms of communication and behavior; and,e) enduring disruptive
or disorganized behaviors(Kourkoutas et al 2012).Families with autistic
children have been perceived by their societies in different ways causing the
families to be shaped by the beliefs systems of autism specific to their
society. Because of social stigma, there is a lot of discrimination not only of
the autistic child but also of the family as a whole because the family is seen
to be a part of the illness. Fear of discrimination and the stigmas surrounding
disabilities lead many families to refuse to go to professionals and receive a
diagnosis for their children. By refusing to be diagnosed, families can avoid
having disability identities (Ecker 2010). The troublesome symptoms such as
tantrums, self-destructive acts and other inappropriate public behaviours
associated with the disorder are difficult to cope with. Consequently, the
parents with autistic children frequently encounter hostile or insensitive
reactions from public,
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mostly because of the inappropriate
behaviour shown by their children. The public reaction to such families is
often stereotypical and negative (Gray 1993). Because of delayed communication
in autistic children, parents may experience positive and negative changes as
the children grows and enters school system. The school system initiates a new
involvement concerning the needs of the child and the parent. Parents and
school personnel are closely related in pursuing the most appropriate education
for the child (Hoppe 2005). Caregivers of autistic children may perceive their
children as more difficult temperamentally than other children and therefore,
use greater control strategies with their children. Thus, caregiver perceptions
of their children's characteristics may influence the ways in which they
interact with their children (Kesari et al 1997).The family social support from
relatives, neighbors and friends relatives, neighbors, friends. Families with
autistic children need social support for coping with stress and attunement due
to having a child with developmental disabilities (Meral et al 2012).
IV. Siblings
of autistic children`
The siblings of individuals with autism
have a variety of adjustment, coping difficulties and impaired intimate
relationships with their affected sibling. Different studies pertaining to
parental characteristics relay a concern for the perceived stress in the health
of family environment. Sibling behaviors of persons with ASD include their
self-competence and experience of living with a brother or sister living with
autism. The studies on sibling characteristics reveal a variety of influences
on personality traits and they accentuate that an interaction of variables
comprise the environment of families with persons of autism (Smith et al
2010).Research also indicates that siblings of children with autism are at risk
of bearing the psychological and emotional brunt of growing up alongside a
child with behavioural difficulties. Many siblings have felt that their parents
perceived their needs as being secondary, with more time and attention given to
the child with autism. Whilst they may have a deep love for their sibling, they
may also harbor feelings of resentment at the amount of time their parents are
spending with the child with autism, and feel that they are being treated
unfairly. Thus, feelings of anger, embarrassment and guilt are as normal as is
feeling very protective of their sibling. Siblings of children with autism are
significantly more likely to experience depression than the general population.
Apart from psychological problems, exhaustion may affect siblings who may be
responsible for domestic tasks and physical care. Problems may also arise when
the increased parental expectations are not accompanied by increased parental
time or attention (Gupta and Singhal 2005).
V.
Financial
stress in families with autistic children
Autism can place financial strains on
families in several different ways. Some families spend fortunes on therapies
and a treatment for their child (Autism Society of America, 2005).The diagnosis
of autism begins a journey that places profound demands on family human and
financial resources for the remaining lifetime of the child. Autism is a
biologically based developmental
disorderabilitythattocommunicate,impairsbuildrelationships,an
individual’sandrelateappropriatelyto the environment. Diagnosis is usually made
in early childhood through a multi-disciplinary assessment of behavior,
developmental level, and communication ability. Efficacy of early intervention
depends on the specific nature and severity of autism. Intervention strategies
are expensive and require long hours of one on-one interaction with a trained
therapist or use of costly foods or drug supplements. Health insurance falls
far short of covering these needs. Special education services do not fill the
gap either. Although public school districts are legally obligated to provide a
fair and appropriate education to children with autism, the educational
programs that are provided are rarely sufficient to address the needs of
school-aged children with autism and are not available to young adults with
autism. Despite higher costs, most parents are forced to seek out and try early
intervention strategies for thefuture. Costssakeassociatedofwith
theirhavingachild child’swithautism are not, only, limited to the cost of
interventions. Like any other forms of childhood disability, parents of a child
with autism often face greater outlays of time and money than they would for a
neurologically typical child. Additional cost is also associated with
extracurricular activities for children with disabilities. Health insurance may
sometimes cover the cost of medical tests used in the diagnostic process and
the cost of prescription medication, but won’tpayfor behavioral or other types
of therapy for autism (Sharpe and Baker 2007).
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VI. Marital
adjustments among parents with autistic children
Marriages of parents of
children with developmental disabilities are portrayed as difficult,
dysfunctional, and particularly likely to end in divorce (Sobsey 2004). Parents
of children with disabilities experience more marital stress and discord than parents
with normal children. Families with autistic children face many stres marriage
is more challenging and more difficult than in the past years; especially
couples with special needs children(Al Horany
et al 2013).Marital stress around the child usually starts when one or both of
the parents realize the child is not developing properly. Couples with a child
who does not seek their attention in the usual way (i.e., eye contact, reaching
out for or giving affection, seeking comfort when hurt) feel rejected or
unimportant to the child. For those whose child develops normally and then
regresses around 18-24 months, there is the added loss of the child they knew
slipping away. When a couple looks forward to having a child, and each person
had an idea of what the expected child would be like but the child does not
match the expectation, or regresses, there is a loss and anguish felt by the
parent. A marriage takes time to remain healthy,
and all too often, time gets swallowed up by the au sleeping, and at least one
of the parents is sleep deprived. In most of the cases, a role division takes
place as one parent, usually mother, becomes
the autism expert, while father works harder to earn money or opts out.
Consequently, the father becomes frustrated at the demands of the mother to
interact or play with a child who does not know how, and mothers become
frustrated at the lack of involvement of their partners (Silice-Kira 2008).
Because of the demands associated with caring an autistic child, parents do not
have personal time which results in a weakened affectionate bond between
parents, depression, withdrawal of one parent from care-giving responsibilities
or even divorce(Greeff and Walt 2010).Mothers usually wonder what they did
wrong-drinking or taking medications during pregnancy, exercising too much,
allowing the child to be vaccinated; thus adding feelings of guilt to an
already stressful situation. Eventually, the couple feels isolated because they
feel it is hard to take an autistic child to people’s homes and are
uncomfortableover.Thestress of dealing with autism and all it entails (the
constant and necessary advocacy at school, fighting for services and support,
added financial burden, trying to handle behaviors and meltdowns at home)
becomes a wedge pushing the parents further and further apart (Silice-Kira
2008).
VII. Conclusions
Autism Spectrum Disorders (ASD) is a
complex neurological disorder which causes impairments in multiple areas of development
including social interaction, communication, and behavior and typically appears
within the first three years of life. Families with ASD children face extreme
challenges in dealing with the behavioral problems associated with the
disorder. The presence of an autistic child in a family has adverse affects on
marital adjustments, sibling relationships and daily family routines. Besides
the parenting stress accompanying the disorder, it has huge financial
implications. Parents having autistic children experience periods of disbelief,
deep sadness and depression and self-blame and guilt whereas others experience
helplessness, feelings of inadequacy, anger, shock and guilt. Family members of
children with autism are often perceived to experience negative psychological
effects which may include higher risk for depression, social isolation and
marital discord. The siblings of children with autism have a variety of
adjustment, coping difficulties and impaired intimate relationships with their
affected sibling. The financial resources required for the medical and
therapeutic intervention lays heavy financial burden on families in several
different ways. The diagnosis of autism places profound demands on family human
and financial resources for the remaining lifetime of the child. Because of the
demands associated with caring an autistic child, parents do not have personal
time which results in a weakened affectionate bond between parents, depression,
and withdrawal of one parent from care-giving responsibilities or even divorce.
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