Mahapatra Pranab, Pati Sanghamitra, Sinha Rajeshwari, Chauhan Abhimanyu Singn, Nanda Rakesh Ranjan, Nallala Srinivas
Department of Psychiatry, Kalinga Institute of Medical Sciences, Bhubaneswar, Odisha, India.
Department of Health Research, Regional Medical Research Centre, Indian Council of Medical Research, Bhubaneswar, Odisha, India.
Indian J Psychiatry. 2019 Jan-Feb;61(1):37-44. doi: 10.4103/psychiatry.IndianJPsychiatry_257_18.
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.
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.
A facility-based cross-sectional study was undertaken at Bhubaneswar, Odisha.
Parents of children with ASD were recruited for this study. Seventy-six interviews were conducted, and the data were analyzed.
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.
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.
自闭症谱系障碍（ASD）在全球范围内是儿童残疾的主要原因。据估计，印度约有170万至200万儿童受此疾病影响。早期诊断是开始ASD治疗早期干预的重要标准。然而，对于每一个获得医学诊断的儿童问题，从父母首次意识到异常症状到最终确诊之间都有一段时间。有几个因素会影响这种初始症状的识别和最终诊断。
本研究试图解读父母对ASD的认知，并了解父母对ASD识别的早期迹象、他们所采用的寻求治疗途径以及他们在整个过程中的经历和挑战。
在奥里萨邦布巴内斯瓦尔进行了一项基于机构的横断面研究。
招募了ASD患儿的父母参与本研究。进行了76次访谈并对数据进行了分析。
大多数父母确定的主要症状是他们孩子的社交困难。大多数父母在孩子被诊断出患有该疾病之前从未听说过ASD。父母咨询了多位专业人士或长途跋涉以确诊。儿童精神科医生通常会确诊并将患者转介到康复中心。
意识缺乏、服务不可用和压力导致了ASD诊断的延迟。需要设计适当的宣传活动和真正的治疗中心。同样，还需要建立转诊和反向转诊机制，以避免诊断延迟并在ASD领域启动及时治疗。
