Introduction

Autism is a group of heterogeneous neurodevelopmental disorders characterized by atypical development of sociocommunicative behaviors and restricted range of interests and activities. Understanding of autism has evolved from Kanner’s syndrome to Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM5) spectrum concept encompassing dyad of sociocommunication deficits and restricted repetitive behaviors, interests, and activities.1 Autism remains a behaviorally defined disorder with diagnosis based on standardized structured interview of parents and the affected child with specific focus on socioemotional behavior, language communications, and cognitive development.2

Despite its biological basis and presence of standardized and well-accepted diagnostic criteria, differences in cultural perceptions of normality of development and behavior can influence the diagnosis of autism. Knowledge and beliefs about normal development and any deviance in development and/behavior influence parental recognition of symptoms and help-seeking behavior. Also, professional’s perception of developmental delays influences their ability to identify and diagnose developmental disorders. These cultural and social factors even have an impact on professional’s adherence to international diagnostic criteria for developmental disorders.3

Indian researches from community and hospital settings have documented delay in parental identification of developmental concerns and subsequent delays in help seeking. These delays cause further delays in intervention which adversely affects treatment outcomes. Existing studies have used qualitative methodology and categorically addressed the delays in care seeking3 4; however, pathways to care adopted by parents in the Indian context have never been documented. The sequence of care-giving agencies or organizations, which an affected person contacts, are known to influence diagnosis, management, and outcome.5 Hence, a knowledge of pathway to care in autism would be helpful in formulating solutions at policy level for delivery of mental health services for this population.6

We performed this study to evaluate pathways taken by parents seeking care for autism in a tertiary care medical center in eastern India. We used the World Health Organization Encounter Form to systematically assess the pathways to care.7

Materials and Methods

Study design, setting, and participants: cross sectional observational study performed in child guidance clinic of a tertiary care medical center in east India. Parents of children (age ≤18 years) meeting INCLEN diagnostic criteria for autism spectrum disorder, who were willing to participate in the study, were included after taking informed written consent.8 There was no exclusion criteria.

Results

Pathways to Care

Parents had consulted many care-giving agencies in the process of seeking care for their child with developmental concerns. These ranged from hospitals, clinics, rehabilitation centers, and alternative treatment service providers. General physicians, child psychiatrists, pediatricians, neurologists, paraprofessionals, like speech therapists, physiotherapists, homeopathic practitioners, and faith healers, were all consulted. More than three-fourths of participants’ first point of contact was general practitioners. Seventy-one percent parents approached child psychiatrists in tertiary level institutes at fourth point of contact. Pathways to care adopted by the study participants is depicted in Figs. 1 2.

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Fig. 1 Pathway to care: points of contact (values shown are in percentages).

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Fig. 1 Pathway to care: points of contact (values shown are in percentages).

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Fig. 2 Pathway to care: autism.

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Fig. 2 Pathway to care: autism.

Severity of autism, comorbidity with intellectual disability did not influence care-seeking pathway. However, gender, socioeconomic status, and number of siblings did affect the care-seeking pathway (Table 5). Chi-square test showed significant statistical association of socioeconomic status with choice of first care-giving agency (Fisher’s exact = 60.53, p = 0.017) and choice of second care-giving agency (Fisher’s exact = 97.003, p = 0.046), gender with first care-giving agency (Chi-square = 92.56, p = 0.000) and fourth care-giving agency (Chi-square = 84.5, p = 0.000), number of siblings with first care-giving agency (Chi-square = 103.29, p = 0.000), and fourth care-giving agency (Chi-square = 111.25; p = 0.000; Table 5).

Discussion

Autism has a biological basis and behavioral symptoms are consistent across cultures; however, cultural salience to the symptoms varies.11 For a behaviorally defined disorder like autism, knowledge about pathway to care is important for designing policy and establishing systems of care. Recognition of symptoms is often determined by cultural and social factors. Identification of any developmental delay or deviance may be culturally shaped.3 The time duration between symptom recognition and diagnosis has a crucial role in autism, given the impact early intervention has on child outcome.12

This is the first systematically conducted pathway to care study using validated instrument in parents of children with autism from India. The mean age of symptom recognition (2.2 years) in our sample is similar to earlier studies performed in community and hospital settings.3 4 13 The mean age of diagnosis in low- and middle-income (LMIC) countries is 45 to 57 months which is higher than high-income countries.13 Our finding of 48 months as mean age of diagnosis is similar to other Indian research reported elsewhere.3 4 13 In majority of the children, diagnosis was done by psychiatrist which is similar to report from a specialist psychiatry center.4 Diagnosis is often needed for accessing educational and training services in the West; however, this may not be the case in India where services are often provided by a multitude of agencies belonging to the private sector. As there is absence of inclusive education facility in government settings and lack of trained special educators, parents are forced to seek care from private centers where there is no provision for standardization of interventions.14 This could be the reason of initiation of interventions before formal diagnosis of autism.

As in reports from other LMIC countries, language concerns are the first and most common symptom reported from India.3 15 Language delay in our sample was the commonest symptom of first concern. In Indian settings, language delay is often concerned normal, hence might be associated with delayed help seeking. Ability of parents in our sample to recognize language delay might be attributed to improving parental awareness. Parent-led organizations have spearheaded autism movement in India and have contributed in provisioning service delivery also.14 Social problems are the next most commonly reported symptoms of concern.3 Poor eye contact, not responding to being called are deficits in social behavior; since Indian culture is more oriented toward social behavior, parents easily identify these symptoms. In majority of our sample symptoms were identified by parents. Not a single case reported being detected by teachers, as this could be explained by the early onset of symptoms during preschool years.

Commonest explanation of autism in our parent population was maternal mental state, maternal illness during pregnancy, and delivery-related problems. These findings are similar to explanatory models of autism from Bhubaneswar and Kerala. Parents from Kerala had a biomedical explanation to autism which authors attribute to high–health care access.16 17 These findings are contradictory to the supernatural explanation harbored by parents of children with intellectual disability or learning disability.18 These explanations are more biomedical in nature and hence translates into better acceptability of medical interventions.

Our sample did not differ in terms of the choice of care-giving agency as per the presence of comorbidity which is different from that observed in parents seeking care for their children with intellectual disability.18 The difference in care-giving agency choice as per sociodemographic status is also different from studies performed in children with intellectual disability. Severity of autism did not affect care-seeking behavior, whereas gender of the child did which could be due to multiple cultural reasons.

Our study demonstrated that, in our setup, it takes an average four contacts to reach a specialized child psychiatry service. By the time the child reaches a specialized child psychiatrist, valuable time for intervention is lost with understandable dismal impact on outcome. However, it is heartening to see that the mean age of intervention initiation was 3.4 years which was 8 months earlier than receiving a definitive diagnosis. Indian literature has documented that mean age of initiation of intervention is 53 months which is much higher than our center.4 Earlier initiation of intervention in our center could be due to more parental awareness.

Limitations

Our sample might be the subsection of population seeking care at the tertiary care medical center, hence, is not representative of the region. Also, parents seeking care at different agencies might be holding different sets of beliefs which may influence their memory of symptom which the child had in the past. Selective bias in retrospective self-report of symptoms is a known phenomenon, and we acknowledge the limitations of the study caused by this memory bias. Socioeconomic data were based on self-report from participants, with limited objective verification. Longitudinal study from multiple centers is needed to have a broader picture of the phenomenon of care-seeking pathway in Indian context.

Conclusion

Pathway to care in autism shows the crucial link between symptom recognition to treatment seeking. There is a long delay in receiving a diagnosis from the time point of symptom recognition. On an average, four points of contact are needed to reach a specialized child psychiatry center. Though early initiation of interventions is a promising finding in our setup, little can be commented on the quality of these interventions.