AFA has a longstanding commitment to research. We believe that research is a key that will help us better understand both the phenomenology and treatment of people with autism and build upon the existing services. Anvay Research and Trainings Centre, AFA’s research wing, is highly respected in the country and has initiated and completed numerous studies to help advance the field of ASD research by providing the Indian perspective of the condition. Some of these research are mentioned below
The first in-depth study of adults with autism in India, the RAFIN Adult Study includes 52 families and 54 adults with autism residing in New Delhi and the NCR.Interviews with parents were conducted on a wide range of topics, and participants completed questionnaires as part of this mixed-method study. For higher functioning adults, interviews and questionnaires were also completed with the adults themselves. In addition, a sub-sample of this study, were families originally interviewed in 1996 as part of an earlier study, offering rich longitudinal data on these families. Analyses are currently underway and presentations and publications will be provided in this space as they are available.
A Sibling Mediated Intervention Study
Having a child developing differently is challenging for parents. It can be as challenging– if not more - for siblings. Research has shown that siblings can act as effective interventionists (Tsao & Odom, 2006) and are likely the major source of interaction throughout the life for a person. By means of providing peer support to siblings and training them to interact with their disabled sibling, the relationship between the dyad can be greatly enhanced. With this rationale, the current study aims to develop a sibling support model for siblings of individuals with autism and evaluate its effectiveness. We are currently recruiting families for the study via AFA database and autism list serves.
Impact of a friendship based intervention on attitudes towards differences and knowledge of autism amongst college students in Delhi
Best Buddies International College Program is a program that aims to enhance the lives of people with disabilities through one-to-one friendships. In 2012, Action for Autism started the Best Buddies India Chapter. Fifteen undergraduate students from Delhi University participated in the year long program at AFA. The current study aims to assess knowledge about autism and attitudes of participants towards people with autism before and after the program. The study also compares the knowledge and attitudes of the participants with a control group of students who did not participate in the program. The effectiveness of the Best Buddies program was studied by exploring the experiences and perspectives of the participants. Preliminary results show positive changes in college students. Detailed analysis of the data is currently underway and will be happy to share it with you.
Evaluation ofEarly Intervention School Readiness Program
Aakaar, a comprehensive early intervention program for children up to seven years with Autism Spectrum Conditions was initiated at AFA in 2014. The current study investigates the effectiveness of AFA’s six-month long early intervention program that focuses presenting the child with various school readiness skills such as free play, learning to be involved in fun activities, interaction with other children, and preparing the child for successful inclusion to mainstream school. The data was collected with six mothers attending the July 2014 session of the program: at the time of enrolment, at 3 months into the program and at the end of the program. Measures consisted of a combination of standardized tools and those developed for the evaluation. In addition to measuring the child’s skills, the mothers were also assessed on the domains such as acceptance, empowerment, knowledge of autism and stress. Functional assessments of individual child were also carried out at the time of enrolment and towards the end of the program.Families attending the future sessions will be invited to participate in the evaluation.
The PCTP has provided intervention to over 450 families, but had never been formally evaluated. In 2010, the UCLA RAFIN team initiated a comprehensive evaluation of the programme, including examining whether changes in parent beliefs and practices are maintained beyond the duration of the training.Read more
Data has been obtained from approximately 40 participants, immediately before and after participation in the training, as well as, eight and fifteen months after the training. A combination of standardized assessments and questionnaires that are appropriate to the Indian context and the goals of the PCTP are used in this project, along with integration of video and interview data. Analyses of the longitudinal data are currently underway and presentations and publications will be provided in this space as they are available.
From 1998 to 200, AFA, received support from the Rajiv Gandhi Foundation to conduct an awareness project among paediatricians across the country.Read more
A survey completed by over 600 paediatricians provided information about criteria they viewed as relevant in making a diagnosis and other questions related to the diagnostic process. AFA undertook a second awareness project among paediatricians starting in 2007 with support from Action Aid and Irish Aid. Allpaediatricians registered with the Indian Academy of Paediatrics were invited to participate through an introductory letter and a copy of the awareness survey. Every paediatrician who responded to the aforementioned letter was then sent information on autism. Specifically, doctors received a poster in Hindi and English that could be placed in their office/clinic, depicting different signs of autism. In addition, paediatricians received a copy of Autistic Spectrum Disorder: A Guide for Paediatricians in India.
In June 2009, an Indian television network with a reach of more than 120 countries and 500 million viewers globally launched a nightly ‘serial’calledAap Ki Antara (‘YoursAntara’).Read more
The plot centred on a five-year old girl with autism, and each episode concluded with a three minute ‘testimonial’ from a real family member of a person with autism, followed by the number of a telephone helpline and website for AFA. A five week window of data were examined to provide information on helpline use and characteristics of the callers.
Aap Ki Antara: The Impact of a Popular Indian Serial on Awareness of AutismPresented at the International Meeting for Autism Research (IMFAR) 2010, Philadelphia, PA USA
(i) Translation and Validation Studies
Translation and validation of several standardised autism screening and diagnostic instruments hasbeen undertaken to lay the foundation for future research and develop or make available culturally validated tools for clinicians and researchers in India.Read more
Some of these tools have been translated as a part of different studies. The tools translated at AFA are presented in the table below:
Name of the tool and Author
Ten Questions (TQ; Durkin, Wang, Shrout, Zaman et al., 1995)
2 yrs to 9 yrs
Autism Spectrum Quotient - Child Version (AQ; Auyeung, Baron-Cohen, Wheelwright & Allison, 2008)
4 yrs and above
Social Communication Disorder Checklist (SCDC; Skuse & Mandy, 2005)
2.5 yrs to 18 yrs
Social Communication Questionnaire (SCQ; Rutter, Bailey & Lord, 2003)
4 yrs and above
Autism Diagnostic Observation Schedule (ADOS; Lord, Rutter, DiLavore, & Risi, 1999)
Ritvo Autism-Asperger’s Diagnostic Scale (RAADS-R; Ritvo & Ritvo, 2007)
18 yrs and above
Modified Checklist for Autism in Toddlers (MCHAT; Robins, Fein, & Barton, 1999)
16 Months to 30 Months
Vineland Adaptive Behaviour Scales(VABS-II; Sparrow et al., 2005)
Parenting Stress Index-36 (PSI_36;Abidin, RR, 1982)
Knowledge and Skills Questionnaire
Parent Sense Of Confidence (PSOC, Gibaud-Wallston&Wandersman, 1978)
Family Environment Scale
Five Minute Speech Sample
Social Responsiveness Scale II- Adult Self report (SRS-II; Constantino, 2012)
Social Responsiveness Scale II- Parent report (SRS-II; Constantino, 2012)
2.5 yrs and above
Glasgow Anxiety Scale for people with Intellectual disability (GAS-ID; Espie&Mindham, 2003)
Beck's Depression Inventory- II (BDI-II; Beck, Steer & Brown, 1996)
RAFIN-Parent Awareness and Advocacy
RAFIN- Family Involvement
Adult Study-Consent forms
BB Study Form
(ii) Prevalence Study
Despite being the second most populous country in the world, there is a serious dearth of epidemiological research on Autism Spectrum Conditions (ASC) in India.Read more
While estimates (based on studies in UK and USA) suggest that India could have more than 18 million people with ASC, this has never been directly tested. AFA’s undertook a pilot prevalence study aimed at estimation of prevalence of ASC in a sample of school children in two cities in India, namely Kolkata and Delhi. The sample for this part of the study consisted of school going children aged 4-7 years, as well as non-school going children within the same age range. The data was collected from Government/Municipal schools, NGO run Schools, Private Schools, Special Schools and ‘Anganwadis’ to procure a sample of non-school going children within the ward. A total of atleast 4000 children in each city were screened for any developmental delay. Phase I (Pre-Screening) of the study has been completed. The study will be followed up with the next phase in which children will be diagnosed for ASD or other developmental delay in order to arrive at the prevalence of Autism in India.
(iii) Assessment Kit for Autism (AK)
Autism Spectrum Disorders is a condition that is recognized worldwide and early diagnosis benefits treatment. read more
Autism is as common in India and South Asia as it is elsewhere in the world, and makes no distinction between region, religion, financial status, even though many professionals continue to believe that autism is a 'Western' condition. This kit was developed on an exploratory basis to determine whether Indian practitioners could effectively use local materials and procedures.
(iv) Parents of Children with Autism: Stresses and Strategies
Considered to be one of the most complex developmental disorders, autism impacts various aspects of a parent’s life. read more
This study addressed the gaps in previous research by examining the perceptions of stress levels, ways of coping, support systems and locus of control in mothers and fathers of children with autism, and compares it with those of parents of typically developing children.