Project at a Glance
Funder : Autism Speaks, USA.
Duration : Mar' 2009 To Feb' 2012
Principal Investigator :
Clinical Consultant : Gauri Divan
Project Secretary : Marypinky Rosario
Collaborators : Dr Shoba Srinath, Professor of Child Psychiatry, National Institute of Mental Health & Neurosciences, Bangalore; Dr Vibha Krishnamurthy, Director, UMEED, Mumbai; Dr Sunanda Kolli, Director, Care-Nidhi, New Delhi; Giselle Lobo & Varsha Dessai, Jyot, Goa; Prof Anthony Bailey, University of Oxford, UK; Miraj Desai, Fordham University, USA (Honorary Research Fellow of Sangath)
ARTI: Autism Research and Training Initiatative in India.
Background and Rationale:
Autism is a developmental disorder of childhood which affects how individuals communicate or relate to others and respond to surroundings. In the 1970s, autism was considered a rare disorder. However, in recent times prevalence has been estimated at one in every 150 children. This makes it the third most common developmental disorder after mental retardation and cerebral palsy.
Recognition of Autism Spectrum Disorders (ASD) is a necessary first step towards any program of work with children with ASD. The gold standard for the diagnosis of ASD relies on a comprehensive neurological and cognitive assessment of the child and histories from other informants, notably parents and teachers. This is a time-consuming and expensive process and, in settings such as India where the fields of developmental pediatrics and child psychiatry are severely under-resourced, neither feasible nor affordable. The emphasis as with the detection of other brain disorders must focus on the use of simple screening tools which can be used by community health workers or general child health practitioners. Screening itself poses a particular challenge for detection of cognitive and behavioural disabilities, such as low levels of education, culturally unique definitions of normality and deviance, and high rates of illiteracy may influence the validity of the screening assessment. Investigators need to meet his challenge by using culture- and education-fair screening tools. In children, an additional challenge is the skills, and time, needed to interview and examine young children. Progress towards our long term goal of improving the lives of children with ASD and their families requires strengthening of the evidence base for effective strategies to identify and treat ASD.
The original goal of ARTI (Autism Research and Training Initiative in India) were: first, to develop and evaluate a case-detection methodology for the identification of autism spectrum disorders (referred to as ASD in this proposal) for use with children aged 4 to 7 years; second, to use this method to estimate the prevalence, determinants and needs of families affected by ASD; and third, based on these findings to generate a model for a community based intervention for ASD which can be tested in future research.
The specific objectives to be conducted over a three year period, related to this goal were:
1. To describe the concepts and explanatory models of ASD
2. To adapt two screening instruments: the Ten Question (TQ) screening questionnaire and the Social Communication Questionnaire (SCQ) and the diagnostic tool, the Autism Diagnostic Observation Schedule (ADOS), for use in the local community,
3. To evaluate the psychometric properties of the screening instruments for the detection of ASD
4. To generate estimates of the prevalence of ASD and information on the determinants, help-seeking and outcomes of children with ASD
5. To generate a priority agenda for research on community interventions for ASD in India, and build the necessary capacity and institutional collaborative framework for implementing research aimed at improving the outcomes of children with ASD.
The ARTI project has until date completed the following related to the above goals:
1. Qualitative research describing the explanatory models of Autism Spectrum Disorder is complete. Based on this work, a poster entitled: "Heroic Mothers: Autism in India", by Miraj Desai and Vikram Patel was presented at APA Congress, San Diego, USA (August 2010).
2. Two papers are in press for publication in International Journals as follows:
a. 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. ( In press) Transcultural Psychiatry
b. 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. ( Accepted for publication) Autism Research
3. The Social Communication Questionnaire has been translated into local language ‘Marathi’.
4. The Autism Diagnostic Observation Schedule (ADOS) has been translated into local language ‘Marathi’ and is available for research use.
5. Strengthened and established necessary local and national collaborative networks for the epidemiological phase with a member of the ARTI team being invited to be part of a National consultative committee by the National Trust
Revision of Phase 2 Work plan
Rationale: The ARTI project has became a member of a national collaboration, joining with the INCLEN network funded by Autism Speaks and NIH. Network members will 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 ARTI team will, additionally, utilize the SCQ and ADOS for validating the NDST/CCC diagnostic algorithm for ASD.
Study design: A community based cluster survey commenced in January 2012, is underway at five sites among children aged 2-9 years of age. A sample of 4500 children (1000 per site and 500 at Goa site) is currently screening these cluster randomized sample across the country using the NDST. Sangath is covering rural coastal sample of 500 children in Goa selected using cluster sampling method. Thereafter all children are assessed with the CCC by trained specialists (psychologists, clinicians and speech therapists). Nested in this study, qualitative research will identify social, cultural, economic and environmental risk factors of NDD in India. The NDD included are: 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.
Revised Objectives of ARTI project:
1. To assess the prevalence of ten Neuro-developmental disabilities (NDD) among children
2. aged 2-9 years in India
3. 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.
4. To undertake formative research for identifying modifiable (environmental, social and familial) risk factors of NDD.
Expected outcomes of revised Phase 2 plans (NDDs study):
1. A validated NDD screening strategy that is applicable in resource constrained contexts, paving the way for a national NDD screening program and vastly enhancing the detection and diagnosis of NDD.
2. Providing accurate estimates of the burden of NDD in India and their epidemiological profile and health service needs and gaps, which will be the basis for advocacy for resource allocations for appropriate interventions and research for addressing unmet needs.
Two tools are using in this epidemiological study developed by INCLEN, New Delhi.
• The Neuro-development screening tool (NDST): The NDST has three sections; demographic information; screening questionnaire for the ten NDD; and risk and protective factor questionnaire. All children will be screened twice using NDST (by a non-medical field officer and a medical doctor, on two separate occasions on two days, in random order) 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 is part of the Child Assessment Booklet (CAB) which includes the CCC for all ten NDDs. The CAB has three sections related to 3 groups of NDDs. These are outlined below:
- Speech and Language and Hearing Assessment
- Intellectual test (Stanford Binet Test ), Grade Level Assessment Device for Learning Disorders, and CCC for ADHD and ASD
- Neuro-motor and Vision assessment
ARTI has commenced its much awaited epidemiological phase. This commenced with the recruitment of a new team which comprises of for the Neuro-developmental Disabilities study (NDDs study). The ARTI team comprising of 3 clinical psychologists, a speech therapist, two field officers and one field medical doctor attended the NDDs study training workshop organized by INCLEN, New Delhi at Hyderabad in November 2011. The work to validate the Neuro-developmental Screening tool has commenced in January 2012. 25 villages have been selected for the study in Goa site. ARTI team conducted sensitization programs for ICDS workers, PHCs and other key community members for smooth processing of program in the Goa. Up until end February, approximately 280 children from 14 villages were assessed and we are hoping for completion of the epidemiological study by mid-April 2012.
1) The most exciting news for ARTI team has been the announcement of new two year grant by Autism Speaks, USA. In this grant Sangath partners with the University of Liverpool, The University of Manchester and The Institute of Psychiatry, Rawalpindi. The new project PASS; Parent-mediated intervention for Autism Spectrum Disorders (ASD) in South Asia; involves culturally adapting and assessing the feasibility, acceptability and effectiveness of an evidence based intervention called PACT (Pre-school Autism Communication Trial) intervention in the local setting. Dr Gauri Divan and Dr Vivek Vajaratkar, member of ARTI team will be visiting The University of Manchester, UK in May 2012 for training.
2nd April: World Autism Awareness Day 2012
Light It Up Blue campaign
Join us in raising awareness for Autism Spectrum Disorders (ASD).
A child with an ASD might:
• Not respond to their name by 12 months.
• Not play “pretend games” (pretend to “feed” a doll) by 18 months.
• Avoid eye contact and want to be alone.
• Have trouble understanding other people’s feelings or talking about their own feelings.
• Have delayed speech and language skills.
• Repeat words or phrases over and over (echolalia).
• Have obsessive interests.
• Flap their hands, rock their body, or spin in circles.
• Have unusual reactions to the way things sound, smell, taste, look, or feel
We do not know what causes Autism as yet, but we do know that some families have children with certain patterns of behavior that make us suspect that genes may be involved. Autism is diagnosed by using screening tools and specific diagnostic tests which observe the way children plan and respond to others.
The treatment for Autism depends on the severity of the disorder. It may involve teaching the child how to communicate by alternative methods and working with a special curriculum while in milder cases (often called Asperger’s Disorder) the focus is working with helping the person to socialize with peers. There is no cure for Autism. What is important is that the earlier Autism is identified the better the chances for improvements in areas of difficulties.
If you want more information please look up: http://www.autismindia.org/, http://www.firstsigns.org/ Or Contact us at Sangath
DOST 2011-2012: (Developing Opportunities for Special Teens)
AN INCLUSION PROGRAMME FOR SPECIALLY- ABLED TEENAGERS
1. To provide young persons and adults with special needs an opportunity for socialization within society
2. To provide a place for students in graduate and post graduate courses the experience of assisting young persons with special needs and creating a framework for individual and group sensitization to disability
3. To provide an opportunity to encourage inclusion outside the school system.
Many children with special needs (CWSN) have problems with socialization. Presently all program are focused on “children” with special needs & the little socialization that these children are exposed to is perhaps only in the school setting or maybe the neighbor-hood park and on social family occasions. As the child with special needs grows there is an urgent need to create a space for socialization beyond the academic or vocational learning occurring in schools and vocational centres. Simultaneously if we are aiming for a truly inclusive society it is time for young persons in the mainstream to be exposed to and assist families who have children with special needs
STRUCTURE OF PROGRAMME:
Sangath is supporting the parent group TIES ( Towards Inclusion Everywhere in Society ) to conduct this program. The target group will be teenagers from the resource rooms in mainstream school - Holy Cross School - Bastora, Chubby Cheeks School –Pilerne (Porvorim), Lourdes Convent- Saligao, between the ages of 12 yrs and 20 yrs.
This program has entered it second year and is conducted in St Xavier’s College , Mapusa. The participants are from the Graduate Degree course and volunteer with peer pair or Buddy with the children with special needs. Initially the volunteers went through sensitization sessions to familiarize themselves with the children they would volunteer with; especially to understand individual strengths and weakness; likes and dislikes. A coordinator of the program supervises the session which are held on Saturdays during the academic year.