CHALLENGES OF MOTHERS REGARDING THE AUTISTIC TRAITS OF THEIR CHILDREN
Hazlina Abdullah1, Dini Farhana Baharudin2, Nursyuhada’ Ab. Wahab1, Myra Aidrin Mohd Ali3,
Norhana Abdullah1, Zarina Ashikin Zakaria1, Rahimah Saimin1
1Faculty of Major Language Studies, Universiti Sains Islam Malaysia
2Faculty of Leadership and Management, Universiti Sains Islam Malaysia
3Kolej Genius Insan, Universiti Sains Islam Malaysia [email protected]
[email protected] [email protected] [email protected]
[email protected] [email protected] [email protected] INTRODUCTION
Autism is a neuro-developmental disorder condition, indicated by substantial impairments in communication and social interactions. Many studies highlight that the impairments are
accompanied by attributes like restricted behaviours, interests and activities demonstrated in the early years (Levesque, 2018; Schneider, Glaser & Senju, 2020).
Children with ASD need much more care compared to the normal ones. Thus, it is expected for parents, especially mothers, with ASD children to feel strained in looking after their unique child.
According to WHO (2019), 1 in 160 children worldwide has ASD. The increasing number of children with ASD is also detected in Malaysia (Kaur, Engakasa, Sivanesom & Bahar, 2015), whereby about 8000 to 9000 born annually may have autism (Dina Murad, 2019). In relation to the
abovementioned context, the current study looks at the major challenges, mainly in autistic traits, faced by mothers of autistic children.
REVIEW OF LITERATURE
It is found that a higher rate of stress and anxiety, as well as lack of social support is reported among the guardians of children with ASD. A major factor is the children’s characteristics that require more attention and support (Dabrowska & Pisula, 2010). Pisula (2011) highlights another factor which is the child’s lack of social skills that can cause restricted understanding between the parents and child, and also the school and community.
In the Malaysian context, studies also found that parents of children with ASD are regularly
suffering stress compared to parents with normal children. The National Autism Society of Malaysia reported an increase in the number of children with ASD in their organisation which although reflects an increase in the awareness of ASD, also suggests more parents will tend to experience high stress levels. A study that compared 30 parents of ASD children and 36 parents of typical children, revealed that the former group of parents recorded significantly higher parenting stress levels compared to the latter group Lee, Ong, Lee and Fairuz Nazri (2017). A quantitative study by Bakri, Rosli, Mohd Kasirun, Md Nasir, Othman, Tengku Kasim (2019) found that the respondents scored the highest for the distractibility/hyperactivity subscale in the child domain and highest for
the depression subscale in the parent domain. This shows that both child and parent domains contribute to parental stress.
Parental stress is also ascribed to the lack of social skills in the ASD child. Deficiencies in social and communication skills have caused minimum comprehension between the parents and the child.
This leads to stress on the parents because ASD children can display behavioural issues which are hard to deal with. These behavioural challenges will increase the demands of parenting, which will also magnify the parenting stress. Moreover, the demands of parenting allow only little time for themselves which may cause accelerating level of stress. Hence, it is likely that the different characteristics of the children and parents play a part in adding parental stress.
METHODOLOGY
This is a case study which investigates mothers with autistic children, regarding their concerns and challenges about their autistic child. 3 mothers were selected through the purposive sampling technique: Madam N (aged 40), Madam K (aged 43) and Madam S (aged 46). Purposive sampling is used because the participants’ selections are based on the participants’ attribute that is mothers of an autistic child. This is to enable the focus on people with certain characteristics who could aid the researchers in the study (Creswell, 2012).
Semi-structured face-to-face interview sessions were conducted with individual mothers, and each session was audio-taped with an average of 90 minutes per session. The interview sessions were conducted in the Malay language. Data were gathered and analysed using the data reduction technique and the thematic analysis method (Creswell, 2008; Ismail Sheikh Ahmad, 2017). The data were transcribed, and the main points were summarised and analysed, and lastly reported as the findings.
FINDINGS AND DISCUSSION
Several themes related to the autistic traits of ASD children that cause challenges to the mothers, have emerged, and are discussed in the following sub-headings.
a. One-way communication
Autistic children show impairments in social-communicative skills (Barbaro & Dissanayake, 2013) and they also have difficulty communicating their thoughts to other people. The mothers in this study have related the same issue with their child, as illustrated in the excerpt below:
- ... It is challenging to understand the communication aspect. Two-way communication is definitely difficult (N10).
b. Aloof
ASD children are less involved in social activities, thus having poor quality friendships. This has caused the mothers to worry, as their children do not display involvement and participation.
- For Wafi, letting him play, he will not play with people. Even though it looks like he is playing together. But actually, he plays alone (N92).
c. Sensitive hearing
Another problem that all mothers in the study have declared is the sensitivity of their child’s sense of hearing. Unlike typical kids, this trait has bothered and caused discomfort to them:
- She cannot listen to loud voices. Children crying - she cannot, it causes headache (S281).
d. Aggressive behaviour
One more problem highlighted by the mothers is the tendency to get violent. One mother shares her experience when her son hit his friend.
- I thought he was OK with loud noises. When he entered school, he punched his friend. The issue was because his friend talked too much (N122).
e. Unique views
ASD children have their own distinctive views which can cause difficulty for parents and teachers at school to handle them.
- For example, I told him we cannot lie and others. If I say that, huh lying, you’re lying. He will say that I am wrong because I said the word ‘lie’ (N140).
f. Routine
ASD children also follow their routines. Knowing this will allow parents and teachers to train them to do things independently, but at times when the habitual and repetitive practices are violated, they can be painfully affected, which causes tantrums.
- He does the same thing. His routine. So, when there are things happening in between, he isn’t aware (N187).
g. Attention to details
ASD children are also very detailed, a trait that can either be good or bad, depending on how it is looked at.
- He describes in detail. For example, playing a guessing game. If we ask him to describe, he loves animals and dinosaurs. If for us, we describe the colour etc., he will describe the height, one that we don’t do. We don’t realise and don’t know it. He takes the details (N191).
h. Obsession
Autistic children have fanatical interests if they like something. A few examples can be seen from this excerpt:
- ... He has issues, for example to get number 1. For others, it’s common because everyone wants to win. For Wafi, it affects daily things (N201).
i. Moody
Autistic children are moody and have a demanding bahaviour as found in some studies. If things do not go their way, they will throw tantrums.
- She has mood swings (S51).
j. Self-hurt
ASD children tend to hurt themselves. Below are some excerpts which illustrate the adverse effects to the children found in this study,
- She likes to hurt herself since she was a child (S63)
- For example, a pen. She will press till swollen or sore. Unless it’s bleeding, she will press.
Her body is full of swellings, many marks (S64).
k. Less mature
In comparison to other typical children, ASD kids are less mature.
- Supposedly she knows how to make friends. Maybe she looks like 10, but she still plays with 5, 6-year-old kids. When bigger it is clearer. Supposedly is matured, but still looks like a child (S90).
All these traits and symptoms have affected their personality and behaviour, which make them rather different from typical children.
CONCLUSION
This study has filled the gap by providing the challenges encountered by Malaysian mothers of autistic children. This paper discusses the traits of ASD which have affected the mothers, and increased parenting demands. The findings also disclose the challenging aspects of bringing up ASD children, that subsequently support the need to promote the family capacity, especially the mothers, to assist them is raising the ASD child.
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