Introduction
Every marriage couple will dream to
have children that healthy physically and mentally, without any flaws. They
will imagine growing old with their own children and will do their best as a
parent. But, not every marriage couple lucky enough to have life as they want. Some
of the children might born with developmental disorder. The parent who hopes
their baby born perfectly will hardly to accept the reality. According to Sahu &
Rath (2003), taking care the children that have developmental disorder will
cause the parent having anxiety, depressed and low self-efficacy. Beside,
parent that have developmental disorder children have a high stress level
compare to parent that have normal children (Greff & Nurfing, 2013).
One of developmental disorder is
autism. In DSM-VI published in 1994 stated that autistic show following
criteria (a) qualitative impairment in social interaction; (b) qualitative
impairment in communication; (c) restricted, repetitive, and stereotyped
patterns of behavior, interest and activities. The criteria for autistic
disorder remained the same in the DSM-IV-TR published in 2000. According to
Grinker (2007), Bleuler described these individuals as disengaged from others,
isolated and self-absorbed. Firth (2003) stated that these symptoms can be
observed in child before age three. Although difficult to observe social
impairment in children two years or younger, normally developing children begin
to exhibit a strong interest in other children beginning at two years of age. A
child with autism will show interest in object and likely to engage in parallel
play. The Malaysian Times on 28 March 2014 reported that, one out of 600
children in Malaysia is born with autism. Recent statistic shows that 47,000 of
the people in Malaysia are autistic.
To taking care children with
developmental disorder is not an easy task (Nicholas, 2008) because autism not
only affects the individual, but the family as well. Having a child with autism
can bring a number of changes to the family especially the parents. Autism
should be rank among the most stressful of childhood developmental disabilities
since they having problem with communication, emotional expression and
antisocial behaviors. This situation gives tremendous effect on the families of
children with autism. Parent with autistic children not only faced emotional
challenge to grow up their child, but having challenge in facing the perception
of society. Besides, aspect of financial also gives huge impact to the family.
Challenge in emotion.
To accept the fact from result of
diagnoses that the children having autism is hard. The moments parents know
their normal child they believed they were raising is no longer a reality makes
parent are often loss to what this means for their child and their family. Boss
(1999) state that the parents will experience ambiguous loss which is an
incomplete and uncertain loss when their child diagnosed with autism since the
child is physically a part of their lives, but the child is different. Studies
show that parents manifest the same emotions as when a child dies when a child
diagnosed with autism (Penzo & Harvey, 2008). Therefore, the parent may go
through five stages of grief process which is denial, anger, bargaining,
depression and acceptance.
Denial stage happens when parents
start to realizes that their child is not develop normally like child. Parents
denied the fact that their child having developmental disorder and hope that
their children are normal. But, because of curious parents will seek for expert
and professional help. At first, reaction of the parent is hardly accept the
fact and say to themselves – this cannot happen to me, to my child, to our
family. Denial rapidly merges with anger as the parents fears are confirmed and
the reality of having a child with autism begin. According to Susan K. Dzurbay
(2011), the anger maybe directed to friends whose children are normal,
professional who they feel should have taken their concerns more seriously. Or
their spouse that makes work as their priority until neglect the responsibility
of caring for the child.
Parents also will experience a
feeling of fear. People are always fears to the unknown than they fear the
known. They will fears about their child future which is what will happen to
the child when it time for them to school, or what will happen if they die, do
they able to live independently. The fear lead the parents start to bargain.
They will hold a hope that their child able to cure through new treatments and
educational strategies. Parents may offer, ‘‘If my child able to cure, I
promise to be a better person’’. Then, parents might express their depress
feeling when they aware that their child cannot easily to cure. Ultimately, the
parents will feel a sense of accepting. They start to accept the child’s
diagnosis and accepting autism. Parents also start to move past blame, guilt,
anger and able to move forward, living with the reality of their child have an
autism.
Challenge in financial.
Another issue that parents of
children with autism faced is financial issues. To taking care of autistic
children need a lot of costs since they need a treatment and also special care
and education. Expanses will involve with therapy and doctors’ visits and also
need to pay for special education and day care. Therefore, many parents of
children with autism need to resort to going into debt to cover their costs and
have incurred additional debt to meet their families need. Ainizal Abdul Latif,
writer of book Genius dari Syurga, state
that her husband have to quit from job in order give extra care to their son
which is have autism. This situation make the financial issue become crucial
when there are only one of financial sources
Treatment for autism is expensive.
The intervention will consumes long
hours of one-on-one interaction with trained therapist and also use costly food
or drug supplement. Even though there are insurant provide to autistic but
majority costs are not covered. Treatment for autistic has four broad
categories which are behavioral interventions, speech and language therapy, neurosensory,
and biochemical interventions. Behavioral interventions is training where a
child is asked to perform a specific action and response. Then the therapist
will react with reward or correction. It aim to correct maladaptive or
injurious behavior and teach life skills. The cost that involve is expensive,
up to $30,000 per year. Speech and language therapy helps a child with autism
in expressive and pragmatic language necessary for social interaction. This
therapy are available in public school system at no additional cost.
Neurosensory therapies are designed to help the child with autism integrate
sensory experience, brain function and response. Whereas, biochemical
interventions is a treatment of food allergies, medication, food and vitamin
supplemention.
Besides, the parents also need to
afford special education for their autistic children. From an educational
perspective, children with autism typically do not attend mainstream classes
and function at a lower educational level than other children their age. Although
public school are legally obligated to provide a fair and appreciate education
with autism, but the educational programs that are provided are rarely
sufficient to address the needs of school aged children and are not available
to young adults with autism. That the reason despite of high costs, most
parents feel compelled to seek out and try early intervention strategies for
the sake of their child’s future.
Challenges in social support.
Social support from the society to
parents that have children with autism are very important. Social support has
been defined as “information leading the person to believe that he cared for
and loved, valued and esteemed, and is important in a network of mutual
obligation and communication”. Many research studies have demonstrated that
these problem impact families to the higher degree of stress and studies shown
that different social support were found to help with stress levels in autistic
families. According to Freedman and Capobianco-Boyer (2000), parents commonly
reported needing specific service support such as case management, types of
therapies, such as behavioral, physical, occupational, or speech, and mental
health counseling.
There are two types of social
support; formal and informal supports. Informal support defined as “a network
that may include the immediate and extended family, friends, neighbours, and
other parents of children with disabilities (Byod, 2002). Cassidy et al (2008)
doing a research which is asked the parents regarding the social support they
received from family and friends. The majority of parents reported that support
most commonly came from their own family only. Whereas, formal support is
service from professionals such as therapists, psychologists or any of social
service setting. Beside, formal support also include structured organizations
such as social club or churches (Byod, 2002).
In Malaysia, there are several
organization have formed to support autistic children. One of non-government
organization that support autism is National Autism Society of Malaysia (NASOM).
NASOM was registered in 1987 by a group of parents and professional. This
organization is a national voluntary charitable and aim to providing education,
help, care and protection for people with autism and their family member.
Beside, 2nd of April was a World Autism Awareness Day which is aims to increase
people’s awareness about people, especially children, with autism. The day
often features educational events for teachers, health care workers and
parents, as well as exhibitions showcasing work created by children with
autism.
Conclusion
Having a child with autism is a life
altering. It can change the parents life in their own identity, affect their
friendships, change their social life and also career decision. Beside, this
situation also will change relationship with partners or spouses and
relationship with sibling. Therefore, any form of chronic illness will cause of
serious challenge, not only to the afflicted individual, but also to the
individual’s family. As a counselor, we should not disregard the welfare of
family with autistic child. Many people experience parenting difficulties
including parents who are on the autism. Appropriate support for both the
parents and the children should be sought when challenges to successful
parenting arise. Learning that your child has a disability or illness is just
the beginning of the journey. At times, you may feel overwhelmed by the challenges
associated with disability and by the strength of your own emotions.
Besides, there will be great if professionals
within the financial counseling and planning community to reach out to families
that struggling to help a child with autism. Apart from that, reduced charging fees
for low and middle-income families who could not obtain financial help in meeting
the needs autism creates. Guide them through difficult but necessary financial
decisions. Help them sort out options and financial consequences of decisions
and assist them in making financial plans for the future and urgent financial
needs. Connect them with reliable sources of information about autism.
References
Wolf,
Rachel N. (2009). "Social Support
Domains for Parents of Children with Autism Spectrum Disorder: Assessing
Perceived Needs and Stress Levels". Masters Theses & Specialist Projects.
Paper 111.
D.
L. Sharpe & D.L. Baker. (2007). Financial
Issues Associated with Having a Child with Autism. Springer
Science+Business Media.
P.
M. Smith. (2003) Parenting a Child with
Special Needs. National Information Center for Children
and Youth with Disabilities. New Digest 3rd Edition.
S.
K. Dzubay. (2011) Parental Grief, Coping
Strategies, and Challenges When a Child has Autism Spectrum Disorder. University
of Wisconsin-Stout.
Prepared by: Rainny anak Bujang, Fatin Atiqah binti Aliffin, Mohd Amin bin Mohd Ismail
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