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Published on: April 22, 2015
Parental care-seeking pathway and challenges for autistic spectrum disorders children: A mixed method study from
Pranab Mahapatra1, Sanghamitra Pati2, Rajeshwari Sinha3
1Department of Psychiatry, Kalinga Institute of Medical Sciences, Bhubaneswar, Odisha, India.
Insights
Parental awareness of autism spectrum disorder (ASD) is low in India, leading to delayed diagnosis. Many parents identified social difficulties but lacked prior knowledge of ASD, facing challenges in seeking timely treatment.
Area of Science:
- Pediatric Neurology
- Developmental Psychology
- Public Health
Background:
- Autism spectrum disorder (ASD) is a significant cause of childhood disability globally, affecting an estimated 1.7-2 million children in India.
- Early diagnosis of ASD is crucial for timely intervention and improved outcomes.
- A gap exists between parents recognizing unusual symptoms and receiving an official ASD diagnosis, influenced by various factors.
Purpose of the Study:
- To explore parental perceptions of ASD.
- To understand parents' early recognition of ASD signs.
- To investigate treatment-seeking pathways, experiences, and challenges faced by parents of children with ASD.
Main Methods:
- A facility-based cross-sectional study was conducted in Bhubaneswar, Odisha.
- Seventy-six parents of children diagnosed with ASD were interviewed.
- Data from interviews were analyzed to understand parental experiences.
Main Results:
- Social difficulties were the primary symptom of ASD identified by most parents.
- A majority of parents had no prior awareness of ASD before their child's diagnosis.
- Parents often consulted multiple professionals and traveled significant distances to obtain an ASD diagnosis, frequently confirmed by child psychiatrists.
Conclusions:
- Low awareness, service unavailability, and stress contribute to delayed ASD diagnosis.
- There is a critical need for improved public awareness campaigns about ASD.
- Establishing effective referral and counter-referral systems is essential for prompt ASD diagnosis and treatment initiation.
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.
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