Academic journal article Indian Journal of Psychiatry

Parental Care-Seeking Pathway and Challenges for Autistic Spectrum Disorders Children: A Mixed Method Study from Bhubaneswar, Odisha

Academic journal article Indian Journal of Psychiatry

Parental Care-Seeking Pathway and Challenges for Autistic Spectrum Disorders Children: A Mixed Method Study from Bhubaneswar, Odisha

Article excerpt

Byline: Pranab. Mahapatra, Sanghamitra. Pati, Rajeshwari. Sinha, Abhimanyu. Chauhan, Rakesh. Nanda, Srinivas. Nallala

Background: Autism spectrum disorder (ASD) is globally a major cause of childhood disability. It is estimated that in India approximately 1.7-2 million children are affected with this disorder. Early diagnosis is an important criterion to start early interventions for ASD treatment. However, for every childhood problem that receives a medical diagnosis, there is a period between a parents' first recognition of unusual symptoms and the eventual diagnosis. Several factors influence this initial symptoms recognition and final diagnosis. Aims: The present study attempts to decipher parents' perception regarding ASD and to understand the early signs of ASD recognition among parents, treatment-seeking pathways adopted their experiences and challenges in the overall process. Setting and Design: A facility-based cross-sectional study was undertaken at Bhubaneswar, Odisha. Methodology: Parents of children with ASD were recruited for this study. Seventy-six interviews were conducted, and the data were analyzed. Results: The major symptom identified by the majority of the parents was social difficulty among their children. Maximum parents had not heard about ASD before their child was diagnosed with the disorder. Parents consulted multiple professionals or traveled long distances to confirm the diagnosis. Child psychiatrists often confirmed the diagnosis and referred patients to rehabilitation centers. Conclusion: Lack of awareness, unavailability of services, and stress contributed to the delay in ASD diagnosis. There is a need for designing proper awareness and genuine center for the treatment. Similarly, referral and counter-referral mechanism is also required to be established to save delay in diagnosis and initiate prompt treatment in the field of ASD.

Introduction

Autism spectrum disorder (ASD) refers to a group of childhood neurodevelopmental disorders whose onset in children is usually before they are 3 years old.[1] The umbrella term ASD includes autism, childhood disintegrative disorders, and Asperger syndrome. Autism appears to have its roots in very early brain development. Impairments in ASD virtually affect all aspects of the child's functioning. The defining features of autistic disorders include impaired reciprocal social interaction, impaired communication skill, repetitive and stereotyped patterns behaviors, interests, and activities.[2] ASD can also be associated with intellectual disability, difficulties in motor coordination and attention, and physical health issues such as sleep and gastrointestinal disturbances. Some person with ASD may also excel in visual skills, music, math, and art.

According to the Centers for Disease Control and Prevention (CDC), it is estimated that globally 1 in 68 school-aged children has an ASD.[3] A systematic review of epidemiological surveys of autistic disorders worldwide shows a wide variation in the prevalence ranging from 4.1 to 94 per 10,000 children with a global median ASD prevalence of 62 cases per 10,000.[4] The average prevalence of ASD in Asia from 1980 onward was reported to be 14.8 per 10,000.[5] In South Asia, the reported prevalence of ASD ranged from 0.09% in India to 1.07% in Sri Lanka. Although not uncommon, there are only a few documented research that describes the prevalence of ASD in India.[6],[7],[8],[9] It is estimated that there are approximately 1.7-2 million children with ASD in India.

Autistic disorders are diagnosed by the presence of observable behaviors and symptoms rather than by etiology. Early diagnosis is an important criterion to start early interventions for the treatment of ASD and reductions in future complications.[10] Early diagnosis of autism not only allows the design of early and effective intervention programs for better long-term outcome of the individual but also reduces the financial burden and improves the quality of life. …

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