Caregivers Challenges and adaptations in Managing Children with Autism in Malaysia: The Need for Family Support and Community Awareness

Caregivers Challenges and Adaptations in Managing Children with Autism in Malaysia: The Need for Family Support and Community Awareness Badariah Sani1 1Faculty of Arts and Social Sciences, Universiti Tunku Abdul Rahman (UTAR) Kampar, Perak, Malaysia badariah@utar. edu, my Due to the many cases of Malaysians caregivers having children with autism and experiencing stress and psychological disturbances, caregivers need to make adjustments to fit the needs of their children as well as to accommodate the needs of other members of the family. The objectives of the study were to explore the challenges faced by caregivers in caring for their autistic children at home and how they overcome the challenges and adapted their lives to fit to the needs of having a special child. The study used a purposive sampling method and caregivers who had more than five years of experience looking after their child were chosen. The researcher used in-depth interviews and carried out four home visitations to observe the children at their homes. The findings indicated that all of the 11 respondents faced many challenges on a daily basis due to their childrens behavioural problems. These included hyperactivity, temper tantrums, self-injury, aggressive behaviours, hyperactive behaviours, problems with toilet training, running away from home, problems when children are stressed like biting things, like to play with private parts, misbehaviours like jumping into a lake, self- locking in storeroom and creating noise, drawing on houses walls, difficulty to cater when the child is sick, have communication and socialization problems, slow in learning, separation anxiety, difficulty to express emotions and feeding problems. They were difficulty problems for respondents to overcome and some of them felt angry, worried, frustrated, sad, afraid, embarrassed, panic and ashamed of being scolded at by people around them such as their neighbours and the community that they live in did not understand the autistic behaviours of their children. They did not have enough sleep and rest and did not have enough time for work as well as no time to see their other childrens needs. At the beginning, many of the respondents had socially isolated themselves and kept the child in the house. Other challenges included financial constraints as well as uncertainty about their childrens future. Coping strategies used by respondents were problem and emotion focused strategies as well as adaptive and maladaptive strategies. The role of religion as an emotion-focused coping strategy has enabled respondents to use a more flexible practice intervention which help to improve their childrens development and also overcome their challenges and cope with their lives. In addition, respondents noted that they were able to carry out their duties because they had social support from family members including the maid to maintain the childs wellbeing. However, the study found that there is a lack of awareness about autistic children among the Malaysian community.