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What Vietnamese parents think when their children are diagnosed with autism?
Nguyen Thi Dung 21:33, 2020/09/16
The aim of this paper is to examine Vietnamese parents' thoughts when their children are diagnosed with autism by analyzing the stories of 9 parents having autistic children.

In-depth interviews were conducted, "Life Story Interview" list was implemented, and interpretative phenomenological analysis was used to collect and analyze the data. Analyses showed that parents tried to overcome negative emotions to reach strongly toward positive thoughts.

1. Introduction

Autistic Spectrum Disorder (ASD) is described as a developmental disability with impairments in social interaction, communication, and stereotypic behaviors (Lennox et al. 2005). When informed of the diagnosis results, some parents have their anxiety decreased because they can name their child’s problem (Altiere and von Kluge, 2009).

In Vietnam, some parents dissatisfied with service providers for many reasons such as their superficial attitude toward parents’ disclosure (Vu, 2014). However, with the study conducted in the first months of the year 2020, thanks to stories shared by parents through in-depth interviews, the author would like to investigate parents’ thoughts when they were informed of the diagnosis.

2. Method

Interpretative phenomenological analysis (IPA) was employed to support parents whose children were autistic to share subjectively their own stories with regard to their feelings about children’s status. IPA is defined to possess a theoretical commitment to individuals in which there is a link between what they talk, think and feel (Smith, Jarman, and Osborn, 1999).

 Illustrative photo

2.1 Participants

Nine parents having ASD children participated in this study, the youngest participant was 26, the oldest was 38, and their children were from 3 to 11. They have been living in Binh Thuan province, Vietnam. Before joining the study, parents were provided with a participant information sheet and an informed consent form. They were informed to participate voluntarily and have the right to stop participating without penalty.

2.2 Data collection and analysis

A voice recorder was used to record interviews which were around 60 minutes for each. The study employed the section “personal ideology” in “Life Story Interview” list developed by McAdams (1995). Each recorded in-depth interview was given a specific number, each participant was assigned a code number, and all data collected were identified by that number to ensure participant confidentiality. The IPA data analysis steps developed by Smith, Jarman, and Osborn (1999) and MAXQDA 12 program were used to analyze 9 transcribed interviews.

3. Results and discussion

These parents admitted that they were extremely sad and stressed when their children were diagnosed with ASD. However, they have already heard about autism and its manifestations somewhere. Besides, after experiencing some unexpected events in life, they considered themselves as well-balanced people with strength of character. Thus, they could keep calm at the sad news, and then negative thoughts made way for positive ones, which arose, occupied and were always in control. By analyzing heartfelt stories mentioned in detail by parents, the study obtained two themes concerned about parents’ thoughts when receiving the result from clinicians.

Theme 1: To be strong to accompany their children

“When the clinician said that my child needs me in all daily activities and that autism would follow him throughout his life, I immediately thought that I myself should be always beside him”

“I must be healthy to be the solid prop for my child”

The parents determined that they would be their children’s major source of assistance. So, they must be strong mentally and physically to become great assistants to their children with unconditional love and high responsibility.

Although being shocked and sad in the psychological clinic, when being able to balance feelings, they thought about what to do next to help their children. One mother recalled her thought when she was informed about her daughter’s condition last year.

“I felt very sorry for my daughter because she was so miserable and disadvantaged. However, my most outstanding reaction in the aftermath of diagnosis was the feeling of determination.”

These parents partly understood their children's misfortunes such as difficulties in initiating friendships, in understanding what others think and feel, in using nonverbal behaviors, and problems in their development of functional language.

Besides, research supposed that genetic factors played certain role in the abnormality of brain development and functioning (Betancur, 2011). Therefore, the intervention process will be a long and arduous battle. Meanwhile, in Vietnam, private schools supplying ASD care for children from 2 to 16 years old are so expensive and limited in quantity (Pham, 2010). Clearly, the difficulties pile up so parents play a paramount role helping their children, and they have no choice but being really strong to help their children.

One father said “If parents fell down because of grief, who would give our child the shoulders to rely on, and if I were not strong enough, both my child and my wife would lose the best support.”

Theme 2: Small step by step to help their children

“With my child status, I consider to divide activities into small ones so that my child and I can achieve the goal”

The parents were determined to help their children with small steps, from easiest activities. They also supposed that when the children were not intervened, their disorder status would be possible to get worse by days. Thus, they decided to get involved in the intervention journey as soon as possible. However, during the intervention process, if they set too high goals compared to the children’s ability, both their children and they themselves would be strained and miserable while they could not achieve good results. So, according to these parents, when small goals were planned and conducted effectively, a step by step progress and good signs would appear. Besides, every little improvement of children was the result of parents’ effort and time.

4. Conclusion

No matter what the feelings parents experienced when receiving conclusion from the clinicians, they were still in the main thoughts of being strong to assist their children with small steps from easy activities.

With this paper, the author hopes to partake in assisting the community to deeply understand what Vietnamese parents thought when their children were diagnosed with autism. As a result, sharing and sympathy from society would be put in these parents’ hands, support them with more energy so that they can carry out their mission well. Besides, parents who are still very sad with the examination results should stand up vigorously and take firm steps for their beloved children.

TAG: autism
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