The Autism Research and Training Initiative in India (ARTI) project was conducted from 2009-2012. It was conducted in two phases; qualitative study phase and epidemiology study phase.
One of ARTI’s aims was to understand the experiences of families living with a child with Autism in Goa, a state in western India, with a view to describing their challenges, coping strategies and unmet needs. This qualitative work led to two peer reviewed journal articles on the experiences of parents in their journey with a child with Autism.
The ARTI project also completed the translation and cultural adaptation of two screening tools and a goal standard diagnostic tool for Autism Spectrum Disorders (the Ten Question Screen, the Social Communication Questionnaire and the Autism Diagnostic Observation Schedule) which are now available for research use in one of the major languages of India (Marathi).
Finally the project became part of a national consortium, led by the International Clinical Epidemiology Network (INCLEN), which undertook an epidemiological study aimed at validating a locally developed screening tool for ten neuro-developmental disabilities, including Autism, and estimating their prevalence. This was the first epidemiological study of its kind in India and a total of 4500 children were surveyed from five sites (including 500 from Goa).
The results of this study are awaited and will deliver a definitive procedure for detection and diagnosis of Autism in the community and preliminary estimates of its prevalence.
Goals and activities
The original goals of this project were:
- To develop and evaluate a case-detection methodology for the identification of Autism Spectrum Disorders (ASD) for use with children aged 4 to 7 years
- To use this method to estimate the prevalence, determinants and needs of families affected by ASD
- Based on these findings to generate a model for a community based intervention for ASD which can be tested in future research. This was to be completed over three years in two phases.
Phase 1 had three aims:
- To describe the explanatory models of ASD
- To adapt, translate and pilot the screening instruments: the Ten Question Screen (TQS) the Social Communication Questionnaire (SCQ) and the diagnostic tool the Autism Diagnostic Observation Schedule (ADOS)
- To develop a plan for Phase 2 and to build the necessary capacity and institutional collaborative framework for implementing this research
Specific Aim 1
1. Understanding local models are a critical prerequisite to ensuring screening tools, diagnostic methods and intervention strategies are culturally valid. With this aim, we conducted In–Depth Interviews (IDIs) & Focus Group Discussions (FGDs) with various stakeholder groups mentioned in the table below.
|In-depth interviews||Parents / caregivers of children with ASD||12|
|Focus group discussions (number conducted)||Teachers in mainstream schools (2)||16|
|Resource room teachers (1)||6|
|Teachers in special schools||15|
|Aanganwadi workers (2)||21|
|Parents of typically growing children (2)||18|
The ARTI team received training for qualitative methodologies in preparation for this activity. Analyses aimed at understanding the recognition of differences in the child’s behaviours, the pathways to and patterns of help-seeking, the impact, the coping strategies and the unmet needs of families with children with ASD.
The findings from our qualitative research have resulted in two peer-reviewed papers (listed below), one PhD dissertation and two poster presentations at the American Psychological Association (APA) Congresses in 2010 and 2011 in USA.
Specific Aim 2
The SCQ and ADOS have been translated into one of the local language; “Marathi??? under the supervision of WPS, USA and approved by publishers.The TQS was also translated into “Marathi???.
ADOS clinical and research competence training was conducted by Professor Anthony Bailey, Oxford University in December 2009; two members of the ARTI team (Dr Gauri Divan, a developmental pediatrician, and Vivek Vajaratkar, a neuro-occupational therapist) completed this training. Following the training, both completed a refresher course led by Dr Vikram Dua (from Canada).
Specific Aim 3
Our initial National Advisory Group (NAG) meeting in April 2009 had made us aware of a group of investigators in India, led by INCLEN and funded by Autism Speaks and National Institutes of Health, USA (NIH), who had been developing a screening and assessment tool for 10 neurodevelopment disabilities adapted to the Indian milieu.
After discussion with Michael Rosanoff, a number of meetings were organized between members of the ARTI team, Autism Speaks and Prof Narendra Arora, the lead investigator of the INCLEN project, New Delhi. In September 2009, the Principal Investigator, Vikram Patel had a further meeting in New Delhi with Dr Arora during which a commitment to collaborate was expressed by all partners.
After discussion and approval from Autism Speaks in the summer of 2009, the ARTI project became a member of a national consortium led by INCLEN, joining four other investigator groups. The aim of this consortium was to implement the epidemiological study as part of the INCLEN network.
Network members would use a common protocol, including the indigenous Neurodevelopment Screening Tool (NDST) and Clinical Consensus Criteria (CCC) as a Gold Standard tool for 10 neurodevelopment disabilities (NDD) adapted to the Indian context.
The NDD included were: Attention deficit Hyperactivity Disorder, Autism Spectrum Disorders, Epilepsy, Learning Disorders, Intellectual Disability, Neuro-motor impairments and Cerebral Palsy, Speech and language disorders, Hearing and Visual Impairments.
In keeping with this modification in our original plans, the revised Objectives (in conjunction with the national consortium) of Phase 2 were:
- To assess the prevalence of ten Neuro-developmental disabilities (NDD) among children aged 2-9 years in India
- Validation of the NDST
a. To validate NDST using CCC, in diverse different geographical and socio-cultural contexts in India
b. To assess validity and inter-rater reliability of NDST when administered by medical and non-medical personnel
c. To assess disability specific validity of NDST and develop a diagnostic algorithm that minimizes the need for applying CCC.
- To undertake formative research for identifying modifiable (environmental, social and familial) risk factors of NDD.
In summary, this study involved recruiting a sample of 4500 children aged 2-9 years in four population strata (rural, urban, hilly and tribal) across five sites in India (Goa, Delhi, Kangra, Hyderabad and Bhubaneswar). At each site, 1000 children were assessed (except Goa where only 500 children were sampled). The study population in Goa comprised children between 2 to 9 years of age in rural coastal villages selected by randomised cluster sampling. All children were screened using the NDST and thereafter all children were assessed with the CCC by trained specialists (psychologists, clinicians and speech therapists). Nested in this study, qualitative research was conducted to identify social, cultural, economic and environmental risk factors of NDD in India.
The field work was carried out between January and April 2012. In Goa, the research team comprised of a site principal investigator (Dr Gauri Divan, the ARTI co-PI) who has coordinated the overall activities of the data collection team. A site co-PI was appointed with partnership with the local Goa Medical College (Dr Mimi Silveira, head of Department of Pediatrics). The field team comprised three members: a medical doctor and two field officers. The hospital team included a clinician (Vivek Vajaratkar, the ARTI project coordinator), three psychologists, and one speech therapist.
In preparation for the epidemiological study, the ARTI team received permission from the Ministry of Health, Goa to conduct study and then conducted sensitization of local communities and key stakeholders in the populations identified for cluster sampling
Two tools were used in the epidemiological study.
- The Neuro-development screening tool (NDST): The NDST has three sections; demographic information; screening questionnaire for the ten NDD; and a risk and protective factor questionnaire. All children were screened twice using NDST (by a non-medical field officer and a medical doctor, on two separate occasions on two days, in random order and blind to each other’s ratings) with the goal of assessing the inter-rater reliability of the tool, evaluating the validity of single versus double assessments against the gold standard, and comparing the non-medical and medical assessor ratings.
- Clinical Consensus Criteria (CCC): The CCC was a part of the Child Assessment Booklet (CAB) which included the CCC for all ten NDDs. The CAB had three sections related to 3 groups of NDDs and were completed by the specialists recruited for the study. These are outlined below:
- Speech and Language and Hearing Assessment: Speech Pathologist
- Intellectual test (Standford Binet test), Grade Level Assessment Device for Learning Disorders, and CCC for ADHD and ASD: Psychologists
- Neuro-motor and Vision assessment: Clinician
The figure below shows the plan for field work.
The Central Coordinating Committee at INCLEN, Delhi identified the villages which were defined as rural costal (each village being a cluster) based on the Census of India categories. Twenty children in each cluster in the 2-9 age groups were randomly selected for participation. Field teams spent 3 days in every cluster, with two days to complete the NDST, followed by the hospital based CAB assessment on a third day.
The hospital based assessments were carried out in conjunction with Goa Medical College. The target was to complete each cluster of 20 children in five day cycles. The project had made arrangements for transport and refreshments for the second stage assessments in the hospital. Quality assurance visits were conducted by an independent team from INCLEN, New Delhi in February 2012.
In addition to this, 50 in-depth interviews were conducted with a sub-sample of children to elicit information on other protective and risk factors of NDDs, explanatory models of NDD, coping and help-seeking strategies, and unmet needs. This information will help in designing appropriate culture-sensitive intervention strategies.
All data were coded in specially designed forms and sent to INCLEN, New Delhi for the analysis.
Future work based on ARTI findings:
Sangath is a collaborator in the PASS project (Parent-mediated intervention for Autism Spectrum Disorders (ASD) in South Asia). PASS is funded by a two-year Global Autism Public Health grant awarded by Autism Speaks, USA (which commenced in May 2012) (Grant #7773).
The project is led by Atif Rahman (PI), Jonathan Green and Vikram Patel (co-PIs). Sangath partners with the University of Liverpool (UK), The University of Manchester (UK) and The Institute of Psychiatry (Pakistan). This new project involves culturally adapting and assessing the feasibility, acceptability and effectiveness of an evidence based intervention called PACT (Pre-school Autism Communication Therapy) in India and Pakistan.
Key innovations of the PASS project are to contextually adapt the intervention to be sensitive to local beliefs and attitudes (for which we will draw upon our extensive experience from ARTI) and designing it for delivery by supervised community counsellors rather than speech and language therapists (who are in very scarce supply). Dr Gauri Divan and Vivek Vajaratkar, members of ARTI team, continue to be the active Sangath team members for PASS and completed PACT training at the University of Manchester, UK in May 2012.
Impact of ARTI project
The project has greatly enhanced our collaborations with some of India’s leading child development experts and institutions and elevated our national reputation. Notable examples which indicate this is the invitations extended to ARTI team members to participate in the following workshops:
- Regional Consultative Workshop for Draft Bill for Persons of Disability organised by National Trust, India. March 2011
- State level Consultative Workshop on Empowering Persons with Disability organised by Disability Rights Goa, August 2011
- National Consultative Workshop on Autism Spectrum Disorders, organised by the Ministry of Health, and WHO, October 2011
- National Consultation on Screening Tools and National Consultation on Screening Tools for the Early Identification of Disability, held by ADAPT, April 2012 in Mumbai.
As a result of the National Consultative Workshop, the ARTI Clinical Consultant, Dr Gauri Divan, was invited to be a member of a task group set up by the National Trust (for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities) to address key issues with respect to Autism at a national level. The PI (Vikram Patel) has been invited to the Mental Health Policy Group of the national Ministry of Health and Family Welfare to design India’s first national mental health policy and its new five year national mental health program.
Simultaneously Sangath has been invited to a workshop in September 2012 by ADAPT, to participate in a meeting to be trained as master trainers for a tool on child functioning and disability by the UN Statistical Commissions Group on Disability Statistics. Sangath also participates annually in the Autism Speaks Light it Up Blue Campaigns by involving non-governmental organizations, schools, shops, restaurants and places of worship. Photos are available on www.sangath.com.
One of the most important impacts of the activities that we conducted during ARTI was the elucidation of the unmet needs of parents of children with ASD. This has led us to develop a collaboration with the Universities of Liverpool and Manchester to culturally adapt an evidence based intervention (PACT) to a low resource setting, which ultimately led to a successful new grant from Autism Speaks (Grant #7773) for the PASS project.
List all publications that are a result of this grant
- Desai, M.U., Divan, G., Wertz, F.J., Patel, V. The discovery of autism: Indian parents’ experiences of caring for their child with an Autism Spectrum Disorder. Transcultural Psychiatry, in press
- Divan, G., Vajaratkar, V., Desai, M. U., Skrik-Liever, L., Patel, V; Challenges, coping strategies and unmet needs of families with a child with Autism Spectrum Disorder in Goa, India. Autism Research, in press.
- Elsabbagh. M, Divan G, Koh. Y-J, Kim. YS, Kauchali. S, Marcín. C, et al. Global Prevalence of Autism and other Pervasive Developmental Disorders. Autism Research, In Press.
- Khan, N., Gallo, LA., Arghir, A., Budisteanu, B., Budisteanu, M., Dobrescu, I., Donald, K., Tabari, S., Hoogenhout, M., Kalambayi, F., Kawa, R., Lemus Espinoza, I., Lowenthal, R., Malcolm-Smith, S., Montiel-Nava, C., Odeh, J., de Paula, C., Rad, F., Tarpan, A., Thomas, K., Wang, C., Patel, V., Baron-Cohen,S., and Elsabbagh, M. Autism and the Grand Challenges in Global Mental Health. Autism Research, in press.
- Patel, V., Kieling, C., Maullik, P., Divan, G. Reducing the global treatment gap for child mental disorders. Archives of Disease in Childhood (commissioned paper under review).
- Desai, M. U. (Oral Defense: October 2012). Caring in context: Parenting a child with an Autism Spectrum Disorder in India. (Unpublished doctoral dissertation). Fordham University, Bronx, NY.
(Underlined authors are ARTI project team members)
List of major poster presentations that are a result of this grant
- “Heroic Mothers: Autism in India”, by Miraj Desai and Vikram Patel, APA Congress, San Diego, USA (August 2010)
- “Consciousness, Culture, and Meaning: Indian Parents’ Experiences of Special Needs Services for Their Child Diagnosed with an ASD??? by Miraj Desai, APA Congress, USA (August 2011)