OUR PROJECTS

With support from Department of Science and Technology, AFA initiated a project with an objective to develop culturally appropriate content and activities for computer assisted early intervention programmes in 2016. This three-year project is being carried out in three steps -

1. Comparative analysis of the existing curriculum and activities of TOBY, e-Saadhya and the needs of children with autism between the ages of 2- 6 years to identify the strengths and limitation of each of the programmes.
2. Identify the existing gaps and develop culturally appropriate content and activities. New content would be available for integration into existing softwares, such as e-Saadhya and TOBY.
3. The new content and activities will be implemented with children in the final year. The primary outcome of the project will be generation of new resources for early intervention for children with autism between 2 and 6 years of age. The resources thus generated may be used by teachers, parents with limited training in autism. The created content and activities have the potential to reduce the cost to a fraction as compared to regular therapy for estimated 18 million people with autism in India.

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.

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.

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.

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.

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 2008, AFA, received support from the Rajiv Gandhi Foundation to conduct an awareness project among paediatricians across the country.

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. All paediatricians 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’ called Aap Ki Antara (‘Yours Antara’). 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.

See also
•  Aap Ki Antara: The Impact of a Popular Indian Serial on Awareness of Autism Presented at the International Meeting for Autism Research (IMFAR) 2010, Philadelphia, PA USA

Translation and validation of several standardised autism screening and diagnostic instruments has been undertaken to lay the foundation for future research and develop or make available culturally validated tools for clinicians and researchers in India.

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		Age group
Ten Questions (TQ; Durkin, Wang, Shrout, Zaman et al., 1995)	Standardized	2 yrs to 9 yrs
Autism Spectrum Quotient - Child Version (AQ; Auyeung, Baron-Cohen, Wheelwright & Allison, 2008)	Standardized	4 yrs and above
Social Communication Disorder Checklist (SCDC; Skuse & Mandy, 2005)	Standardized	2.5 yrs to 18 yrs
Social Communication Questionnaire (SCQ; Rutter, Bailey & Lord, 2003)	Standardized	4 yrs and above
Autism Diagnostic Observation Schedule (ADOS; Lord, Rutter, DiLavore, & Risi, 1999)	Standardized	All ages
Ritvo Autism-Asperger’s Diagnostic Scale (RAADS-R; Ritvo & Ritvo, 2007)	Standardized	18 yrs and above
Modified Checklist for Autism in Toddlers (MCHAT; Robins, Fein, & Barton, 1999)	Standardized	16 Months to 30 Months
Vineland Adaptive Behaviour Scales(VABS-II; Sparrow et al., 2005)	Standardized	All ages
Parenting Stress Index-36 (PSI_36;Abidin, RR, 1982)	Standardized
Knowledge and Skills Questionnaire	Standardized
Parent Sense Of Confidence (PSOC, Gibaud-Wallston&Wandersman, 1978)	Standardized
Family Environment Scale	Standardized
Five Minute Speech Sample	Standardized
Social Responsiveness Scale II- Adult Self report (SRS-II; Constantino, 2012)	Standardized
Social Responsiveness Scale II- Parent report (SRS-II; Constantino, 2012)	Standardized	2.5 yrs and above
Glasgow Anxiety Scale for people with Intellectual disability (GAS-ID; Espie&Mindham, 2003)	Standardized
Beck's Depression Inventory- II (BDI-II; Beck, Steer & Brown, 1996)	Standardized
RAFIN-Acceptance Scale	Developed
RAFIN-Empowerment Scale	Developed
RAFIN-Challenging situations	Developed
RAFIN-Parent Awareness and Advocacy	Developed
RAFIN- Family Involvement	Developed
Adult Study-Consent forms	Developed
BB Study Form	Developed

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.

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 at least 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.

Autism Spectrum Disorders is a condition that is recognized worldwide and early diagnosis benefits treatment.

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.

Considered to be one of the most complex developmental disorders, autism impacts various aspects of a parent’s life.

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.