ABSTRACT
This study explored the lived experience of parents with two and more children diagnosed with autism spectrum disorder. The researcher utilized qualitative research design with phenomenology as an approach. Participants were selected purposefully with the criteria being looked for.
After analyzing the data gathered from the testimonies of the mothers, seven essential themes emerged: (1) Routine Activities; (2) Struggles upon Learning an Autism Diagnosis; (3) Quitting Job; (4) Supporting each Other among Couple; (5) Support Groups; (6) Learning Experiences and; (7) Joys of Autism. Typical days of these parents were routine which were mostly adjusted to the routines of their children. Sadness, worry, and denial appeared to be the most common reaction of the participants upon learning that their children have autism. Diagnosis of the “first” child was the most painful and hardest to accept. Meanwhile, quitting job was one of the decisions these mothers had to do since they could not let caregivers to look after them because of the fear that they could not handle the behaviors of their children. Having two or more children with autism made the participants and their husbands become stronger and support each other more. In terms of support group, all the mothers agreed with its importance. They shared that joining groups and organization that advocate awareness and rights of persons with autism helped them not just by teaching ways in dealing with their children but also made them feel that they were not alone in their struggles. They made friends with familes who had the same situation. Participants added that acceptance and understanding the children’s condition; and patience and unconditional love were very essential based on their experience. Finally, mothers shared the joys of having children with autism contrary to many studies which focused on struggles and challenges. They happily stated that their children were always on their side with their own ways of expressing affection.
Given the findings, parental support programs were proposed. They were (1) In-school parents support group, (2) Free seminars and training, and (3) Livelihood programs.
KEYWORDS: Lived Experience, Parents with Two and More Children with Autism
INTRODUCTION
Raising a child is indeed one of the most difficult tasks that parents encounter. It gets harder if the child suffers from some kind of disability. The parents experience significant stress and face challenges in parenting often accompanied by great sadness, fear, worry regarding disabled child and even disbelief they are really disabled. These stresses arise from factors like financial burden due to the expenses of medications, speech and occupational therapy, counseling, rehabilitation and physiotherapy, social and emotional development and schooling, changes in routine and the emotional stress from dealing with typically developing siblings. Parenting a child with developmental disorder may even impact family and have negative consequences on the parents. Because of the behavior of the disabled child, parents may even withdraw themselves from social interactions. These parents may also experience mental health issues, depression, anger and stress, reduced wellbeing and poor life-satisfaction because of the continual care provided to the disabled individuals who have lifelong disability (Panjrath & Mishra, 2018). Being parents to child with disability also affects couples’ relationship. While there are studies that suggest that couples caring for a child with a disability are at greater risk of relationship issues leading to separation, there are also who draw support from one another and handle the pressures and circumstances of caring responsibilities. The research showed that when couple support each other, stresses and depression associated in caring for disabled child would be lessen.
Autism spectrum disorder (ASD) is one under the umbrella of disabilities. According to the Diagnostic and Statistical Manual for Mental Disorders, ASD is a neurodevelopmental disorder characterized by difficulties with social interaction and communication, and by restricted and repetitive behavior. These symptoms are present from early childhood and limit or impair everyday functioning. Functional impairment becomes visible and varies among individual with autism depending on their environment and characteristics. Typically, core diagnostic features are obvious during developmental period thus, early detection, early intervention and support are very important to help someone with autism function like a typical child as possible. Manifestations of the disorder also differ depending on the level of the development, how severe the condition is, and chronological age; hence, the term spectrum (American Psychiatric Association, 2013).
Parents of someone with autism must have a wide understanding because they need to comprehend what their child needs to express especially when he/she is non-verbal. But when you have two children with autism, the job is considerably more complicated because usually, siblings with autism have different developmental levels. According to one study, there are 19% families have more than one child with autism among its members (Sarris, 2019).
Being in special education for years, the researcher has witnessed the struggles of parents with special needs children. Many of them feel devastated upon learning their child’s diagnosis. There are also some who are still in the state of denial.
There are considerably number of researches and studies about this topic but this study aims to learn from parents who have two or more children with autism, how it’s like to live with them, how they cope with the challenges and accept their children’s diagnosis. This study hopes to help other parents and learn from each other’s experiences.
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