Monday, 25 May 2015

FAMILY'S CHALLENGES IN CARING AN AUTISTIC CHILD



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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