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Autism and other neuro-developmental disabilities among children in India

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Autism and other neuro-developmental disabilities among children in India

MKC Nair1, D. Silberberg2, J. Pinto-Martin3, ( 1.Child Development Centre, Medical College Campus, Kerala, India; 2.University of Pennsylvania School of Medicine; 3.University of Pennsylvania School of Nursing, Center of Autism and Developmental Disabilities Research and Epidemiology)

Background: Brain disorders account for over 25% of the Global Burden of Disease, and an even greater proportion in developing countries. However, there is very little information on the basic descriptive epidemiology of these disorders in childhood, particularly in developing countries such as India. Published studies are fraught with methodological problems, including variable classification schemes and ascertainment strategies.

Using a conservative estimate of the prevalence of autism of 2 per 1,000, there are an estimated 1.7 million autistic persons in India, assuming that there are no significant variations in this rate worldwide. While the disorder is not rare, the majority of autistic people in India have not been diagnosed and do not receive the services they need. This problem occurs in many countries, but is especially true in India where there is a tremendous lack of awareness and misunderstanding about autism among the medical professionals, who may either misdiagnose or under diagnose the condition.

Objectives: The primary objective of this research project is to assess the screening and diagnostic prevalence of autism and other neuro-developmental disorders among children aged 2-9 years in India and to gather information on potentially modifiable risk factors.

We propose to:

[1] Generate valid data from India, capturing it’s socio-cultural and geographical variability, on prevalence of specific neuro-developmental disabilities in the age group 2-9 years with the use of a neuro-developmental disability screening tool (NDST) followed by application of a “Consensus Clinical Criteria” (CCC) to assign specific diagnostic labels.

[2] Develop a Neuro-Developmental screening tool which will enable a health worker in the community to screen children for a neuro-developmental disability.

[3] Establish Consensus Clinical Criteria for assigning specific diagnoses to neuro-developmental disabilities.

[4] Generate data on potentially modifiable risk factors associated with development of neuro-developmental disabilities


Phase 1:

Objective 1: Development of a Neuro-developmental Disability Screening Tool (NDST): Project Investigators and experts from India (15) and US collaborators and consultants (4) will develop the NDST during a three-day workshop at the start of the first year.

Objective2: Development of “Consensus Clinical Criteria”: Indian experts and investigators and US collaborators and consultants attending the workshop will develop “Consensus Clinical Criteria” for defining specific neuro-developmental disabilities during a three-day workshop.

Objective 3: Validation of the Neuro-developmental disability screening tool (NDST): The refined tool will then be validated in four different strata: rural, urban, hilly areas and tribal areas. A team consisting of a graduate physician and a social scientist will administer the screening tool. The “screened-positive” cases and an equal number of randomly selected “screened-negatives” will then be evaluated by a pediatrician and a specific disability, if any, will be diagnosed using the Consensus Clinical Criteria. The sensitivity, specificity, construct validity and reliability of the NDST will then be determined.

Phase 2

Objective 5-6: Estimation of prevalence and description of the spectrum of neuro-developmental disabilities: Once the screening and diagnostic tools have been properly tested, the prevalence of neuro-developmental disabilities will be assessed using a population based cluster survey using the Probability Proportionate to Size (PPS) technique.

Objective 7: Quantification of potentially modifiable known risk factors for neuro-developmental disabilities: A questionnaire will be designed based on the initial formative research data and will include the identified modifiable risk factors for neuro-developmental disabilities which will be quantified.

Handling of children diagnosed with a neuro-Developmental disability: A network directory of available institutions handling children with neuro-developmental disabilities will be made available. A referral system will be developed and after making clinical diagnosis and typological classification of the disability, the children will be referred to an appropriate nearby facility for management.

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