Lived Experience of the Social Suffering of the Parents with Autism Spectrum Disorder (ASD) Child

ASDs are classified as developmental neurological group disorders, which cause significant deficiencies in social interaction and communication. Restricted and repetitive behaviors are also presents. Raising a child with ASD is a difficult experience and it negatively affects both the child and his/her family. The parents of the child with ASD which has the most interaction with whom, suffer from ASDS challenges more than other relatives. Lessen parenting efficiency and increasing their physical and psychiatric problems, are some examples of those challenges. The studies reveal that parents and mothers in particular, experience higher levels of stress compared to the ones with normal children. For many years, most of the studies have been focused on the effects of parents on children with ASDs, but recent research have concentrated on the effects of children with ASDs on their parents' lives. The present research aims to discover the ASDs children’s parents’ sufferings and problems thorough the study of their lived experiences. The current study applies qualitative method with the thematic analysis approach. Purposive sampling is performed on parents of the children with autism spectrum. In this study, 13 interviews were conducted with parents, each of which had lasted between 45 to 70 minutes. The participants were 4 fathers and 9 mothers with a child diagnosed with ASD. The data collection tool was a semi-structured in depth interview. Data analysis process was started from the first interview via MAXQDA software and coding is perfumed after each interview. Data were eventually analyzed by thematic analysis method. Finally, the outcomes of parent’s lived experiences were documented in the primary and secondary themes. In this study, four criteria of Guba and Lincoln were used to increase scientific accuracy. The data was categorized in five main themes. The first category was on the diagnosis process. The sub-themes include pre-diagnosis confusion and the different medical diagnoses. The confounded parents were trying to understand the cause of their child’s abnormal behavior, which was the first step in the hard and tough process of medical diagnose. There is no specific reference available for parents to instruct them how to setup a health record and ease their journey. All the participants complained about the difficulty of that period. Some of them got the definitive diagnosis of autism after years. Different and incorrect diagnosis of the doctors and other professionals was another problem for parents, which prolonged the diagnostic process.
The second theme was on parents' everyday problems. They hardly did their routine chores; suddenly, sleeping and eating turn into big problems as well. The intensity of those problems is a function of disorder severity. The physical problems of these children cause big challenges which negatively affect their parents.
The third theme was the family's presence in the community, which had two sub-themes, lack of awareness and limited interactions. All parents believed that not only public awareness of autism was very low, but also there was no attempt to know the disorder. The lack of awareness eventually raises judgment or pity and compassion, which are not pleasant for parents. As a result families decided to limit their public presence and getting reluctant to go out unless it was necessary. The parent’s problems with public presence do not stop here; traveling and using public transportation are also hard for them.
The next theme was on the support services, which is a hurdle for autistic families. This theme has two subsystems: weak support system and therapeutic problems. The whole 13 participants argued that there is no privileged government support for families with autistic children. Beside poor welfare services, children with ASD have no special insurance, and even those families with golden insurances cannot use them since they do not cover autism costs, including speech therapies and occupational therapy. The scarcity of autism schools and poor condition of care centers are the other aspects of parent’s concerns.
The therapeutic problems were under the second sub-theme. There is no clinic or even a special section for those children. As parents claim being in government (public) hospitals is harder than private hospitals or clinics due to large crowd, but financial and insurance policies do not make any thing easier. Other sicknesses are harder to treat in those children; they also magnify autism related behaviors.
The last theme which causes the greatest suffering for the families is financial problems. The whole 13 participants in the study have been devastated by the costs and the hardships. Autism costs for families, even for those with high incomes are very frustrating. Most of those costs are spent on children’s occupational and speech therapies. Autism costs are not covered by insurance which intensify all the mentioned problems. Some of the participants are no longer able to pay for those costs and in spite of their inner desire they quit classes and occupational therapies. The research was focusing to study the parents lived experience of a child with ASDs. Thus, 13 parents participated in-depth interviews. The results reveals that ASDs completely destroys the family routines and cause so many challenges and sufferings.
Besides those problems that parents faces during the diagnosis process, everyday problems, public presence, lack of support services, medical problems and severe financial problems, cause suffering to those families. Although before the study it was predictable that there are quiet a number of problems for parents with children  in autism spectrum, no one expected this volume of suffer. The parents of the autistic children face many difficulties  and challenges in almost every aspects of their lives. The improvement of these conditions requires complete  transformation.
The interviews of this  study were conducted at various locations٫ in some cases the location were selected by parents, and recorded with their consent. There were cases that recording was not allowed, instead,  noting and writing was employed. All the names are aliases to protect the privacy of the contributors.
We sincerely appreciate all parents who participated, despite of their problems. We also acknowledge the School of Behavioral Sciences and Mental Health and Autistic school of Ray for making the interviews possible.