The impact on parents of discovering that a child has Autism Spectrum Disorder: A Phenomenological study of Lusaka parents
Date
2013-02-03
Authors
Nyoni, Joachim
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Abstract
No parent anticipates having a child with a developmental disability such as autism. The purpose of the study was to investigate and explore the impact on parents of discovering that their child has been diagnosed with autism. A phenomenological approach was used to investigate parents' lived experiences of raising a child with Autism Spectrum Disorder (ASD). 17 biological parents were interviewed concerning their lived experiences at pre, peri and post-diagnostic adjustment. In most of the families in this study, one parent had at least tertiary education. Data was collected through in-depth interviews using the Collaizi's phenomenological method later on modified by Moustakas (1994). Ten major themes were categories and each theme was illustrated by major quotations from the parents. The Themes were:(l)Making sense out of the birth of an ASD child;(2) Encounter with professionals ;(3)Parents' general knowledge of ASD and their perceptions;(4) In search of diagnosis;(5) Effects on the family;(6) Costs ;(7)Cultural beliefs ,attitude and stigmatization ;(8)Services inadequacy.;(9) Future plans, desires, hopes and fears ;(10) Parents coping strategies. Research findings reveal that parents experienced challenges which ranged from frustration, pain, confusion, doubt and disempowerment at pre -natal ,then shock, refuting the diagnosis and having a feeling like that of losing a normal child through death. At post diagnosis, parents showed some acceptance. Young parents with first born ASD children took time to notice the child's condition as compared to seasoned parents. Parents' encounter with professionals was insufficient, coupled with inconsistent professionals' opinions which often negated parent's opinions. Access to quality service provisions such as speech therapy were insufficient and in some cases, not even available. This was due to shortage of staff, bureaucratic and red-tapes tendencies in hospitals. Parents had challenges of finding suitable schools for their children, as mainstream pre-schools and Primary were unable and often times unwilling to accommodate ASD children. Marital conflicts emerged which included separation and fighting. Single mothers suffered greater challenges as compared to married ones, as they had to mix academic life and child caring .A child's poor, social and language communication brought more frustration and stress on all parents. Parents suffered costs in social, financial and emotional domains. The costs were in form of medical bills, transport, child and parents' stigmatization, hence living an isolated life. However, parents developed various stress coping mechanisms such as empowerment, humor, openness, faith and belief in God's healing power, positive reappraisal and confrontation approaches.
There is a greater need for collaboration and partnership between multi-disciplinary professionals during the diagnostic process. Holistic assessments are recommended that evaluate autistic children and their families within their micro-, meso-, and macro-environments as all the parties consider the peculiarity of ASD as compared to other mental retardation conditions.
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Keywords
Autism , Autism in children--Parents , Autistic disorders