Research Activities at/with AFA
Action ForAutism (AFA) serves as a training ground to, as well as, mentors several Indian and international graduates, postgraduates, doctoral and post-doctoral students who are interested in the field of autism in India. Numerous students of social work, psychology, and special education from leading universities in India and other parts of the world have conducted research projects in conjunction with AFA. All the research conducted at AFA is reviewed by the institutional review board before commencement.When deemed appropriate and time permitting, the team from AFA provides feedback on the design of such projects and studies as well as collaborates with the same on certain occasions. Since a lot of these studies may not be published and/or distributed widely, but mayprovide interesting information about autism, especially in the Indian context, a copy of these studies are kept at the AFA resource centre, whenever possible.
List of some past projects conducted by students visiting AFA.
- Sanpalei N Lyngdoh, a master’s student in Education from the Central Institute of Education, University of Delhi, carried aStudy on the Needs and Problems of Persons with Asperger's Syndrome.
- Akriti Tripathi, a Masters candidate in Clinical Psychology from the Amity Institute of Behavioural (Health) and Allied Sciences did aComparative Study Of Coping Resources And Quality Of Life Of Parents Of Children With Autism In India And UAE.
- Chitra Srivastava, pursuing Bachelor’s degree in Clinical Psychology from Zakir Hussain College, Delhi University, studied the factors related to the emotional well-being of parents of children with Autism Spectrum Disorders.
- Sayani Mitra, pursuing Masters in Social Work / Public Health from FXB India Suraksha did a research On Studying Issues Of ‘Disability And HIV/AIDS’ Especially Among Children In Action For Autism
- Ritika Datta, a Bachelor’s degree student in Psychology from Lady Shree Ram College, Delhi University, collected data for her study the Mother Child relationship of adolescent having siblings with autism.
- Mette Romer, a Masters student of Social Work from Aalborg University, Denmark did a study to Trace the understanding of challenging behaviour through the case of the Open Door School.
- Shababna Soomar, pursuing Ph.D. in Clinical Psychology from College in Sacremento carried on a Phenomenological Study of the Culture-Specific Theory of Self and Other among Individuals with Autism across the United States and India.
- Sunayan Sharma pursing a PhD in Home Science from Banasthali University studied Families of Children with Autism: Selected Contextual Variables.
- Preeti Kamboj, a Masters student of Food & Nutrition from Lady Irwin College explored Nutritional Status, Sensory Sensitivities & Feeding Problems in Children with ASD.
- Aparna Kapoor, pursuing Master’sdegree in Foundations of Clinical Psychology & Mental Health, from University of Sussex, did a cross-cultural study on siblings of children with a disability.
- Mette Romer, a student at Aalborg University, Denmark, compared the work strain social workers experience within the field of special education institutions in India and Denmark.
- Janet Graetz, Associate Professor at Oakland University did focus groups to study the quality of Life amongst parents living with their children with autism.
- Dharmendra Alla who was pursuing Masters in Information Systems from Leeds Metropolitan University studied Computing Systems for People with Autism.
- Dr Vidya Rajesh, PhD. an Assistant Professor of Biological Sciences from BITS Pilanicarried out a study on the characterization of the prenatal and perinatal risk factors of autism spectral disorder in Indian autistic population.
- Manjusha Sai who was pursuing her medical studies from Gandhi Medical College, Hyderabad, explored the Independent Effects of Advanced Parental Age, Consanguinity and Maternal Hypothyroxinemia on the Risk of Autism.
- Prerana Nigam, student of Occupational Therapy completed her Master’s level dissertation in Establishing a correlation between parental stress with the severity of their autistic child
- Kanika Jindal, doing Applied Psychologyin Jamia Milia Islamia College did her masters level dissertation on Behavioural problems and Social Maturity among Autistic Mentally Retarded and Normal Children
- Aesha John, PhD candidate from Oklahoma University explored Link between Parental, Child, Dyadic Variables and Social Adjustment in children with ASD in the Indian context.
- Megha, from National Brain Research Centre, Manesar studied speech impairments in children with ASD.
- Gunjan Niti Sagar, Master’s student in Occupational Therapy from Jamia Hamdard University developed a tool on sensory assessment.
- Prakriti Gupta, pursuing BA (Applied Psychology) from Delhi University who came to assess and compare family environment of children with disability.
- Sindhu Rajesh, final Year student of MSc Nursing at Raj Kumari Amrit Kaur College of Nursing did a descriptive survey to assess the psychosocial problems and quality of life of parents of children with Autism with a view to develop guidelines for the parents on management of children with autism.
- Kuljeet Heer, PhD candidate in Psychology, from University of Birmingham, UK studied carers’ views of their children with developmental disabilities.
- Anjana Adams, third year student at Cambridge University, studying social anthropology came to see the educational methods are used to help children in both India and England.
- Dr Nandini C Singh, PhD from National Brain Research Centre Manesar, Haryana carried a study to see speech impairment in children with Autism Spectrum Disorders (ASD).
- Poonam Dhokia, a Fulbright scholar pursuing Masters in Public Health from University of Southern California, studied the role of culture in early detection of Autism. For this purpose, we developed a research around the release of the movie My name is Khan to understand the impact of the movie on autism related knowledge, beliefs and attitudes of people in Delhi. The study was based on findings from our earlier research on Aap Ki Antara.
- A Sociological study of families of children with Autism in Delhi: Issues and challenges.
S. Vaidya, 2009, August. Paper presented at the Asian Pacific Autism Conference, Sydney, Australia
- Polina Rover came from US to complete her research on “Autism across cultures: Exploring mental health in US and India”
- Phoebe Rose continued her research on “Autism in India: Therapeutic choice after changes to intellectual property law.” Many children, Parents and the staff of AFA spent time and shared their knowledge and experience with Phoebe Rose who collected data for her doctorate level research project.
- Vimal Paul, a student of architecture, carried out an interesting research on the building and services available at the National centre.
- Neeraj Mishra, a student of Occupational therapy, Jamia Hamdard University has completed his research to study the effects of a specially designed therapy garment in children with SI dysfunction.
- Exploring Constructs of Intellectual Disability and Personhood in Haryana and Delhi (2008). Indian Journal of Gender Studies, Vol. 15, No. 2, 317-340. (N. Mehrotra and S. Vaidya)-
- Abhery Roy, a Bachelors student of Psychology from Amity Institute of Behavioural (Health) and Allied Sciences carried his research onEmotional distress and its correlates among parents of children with autism.
- Rekha Negi, a Masters student of Psychology from Delhi University carried her study on Psychoeducational Assessment in Autism.
- Prathma Raghavana Masters candidate of Psychology from University of Paul-Valery – Montpellier III, France did research on trends in Symptom Recognition, Diagnosis and the intervention techniques concerning the young autistic child in India.
- Many children, Parents and staff of AFA shared their time, Knowledge and experience with Prathma and Suneeti who needed to collect data for their masters level research.
- Dr Smita Deshpande (Shatabdi), PhD from the dept. of Psychiatry, RML hospital developed a screening tool for autism and AFA assisted in the field trail of the Indian Scale for Identification of Autism.
- Pragati, a final year student of the college on Architecture and Centre for Design Education, Nasik, designed various products including a pen stand, CD cover and calendar to spread awareness about autism to medical professionals
- Shantanu Ghosh, a PhD candidate from the Division of Neuroimaging, Dept of Humanities & Social sciences, IIT, Delhi developed a diagnostic criteria for autism using neuroimaging technique.
- Alok Singh, a Bachelors student of Social Work from the department of Social Work, Jamia Milia Islamia, University of Delhi collected data for his dissertation on Differently-abled children.
- Mohammad Arshad, pursuing Masters in Marketing from Western International University observed the Strategies for Fund raising –A comparative Analysis.
- Divya Sadana, pursuing her Bachelors in Psychology from Kamala Nehru College, Delhi University, did her study on Stress Experienced by Parents of Normal & Autistic Children.
- Dr Nandini C Singh,PhD, Associate Professor from theNational Brain Research Centre Manesar, Haryana did a Computational Analysis of Language Impairments in Children and Development of Subsequent Therapy.
- Dr Subhash Khushu,PhD in Radiological Imaging & Biomedical Engineering from the Institute of Nuclear Medicine & Allied Sciences, Defence Research & Development Organization, Delhi carried a study of Cognitive and Metabolic Impairment in Autistic Subjects.
- Neha Gautam,pursuing master’sdegree in Food & Nutrition from Lady Irwin College, Delhi University explored the Feeding Problems in Autistic Children.
- Soumya Bhatt, a Bachelors candidate in Psychology from Zakir Hussain College, Delhi University did a Comparison of Children with Autism and Normal Children on Social Maturity.
- Keysha Patel, pursuing a Bachelor’s degree in Psychology from theSchool of International Training, (SIT/FCET North India) Jaipur, collected data for her dissertation on Perceptions of Autism in India.
- Somy Abraham, student of Social Work pursuingMasters fromRajagiri College of Social Sciences, Kerala, conducted a Study On Stress Among Parents Of Autistic Children.
- Rupa Bishnoi, from the Michigan State University carried a study on early literacy and special education strategies involved in teaching and dealing with students of ASD.
Collaboration with others: Larger research studies
From symptom recognition to diagnosis: Children with autism in India. (2004)Social Science and Medicine 58 (7), 1323-1335. (T. Daley)
The need for cross-cultural research on pervasive developmental disorders. (2002) Transcultural Psychiatry 39 (4), 532-551. (T. Daley)
Diagnostic Conceptualization of Autism Among Indian Psychiatrists, Psychologists and Pediatricians. (2002) Journal of Autism and Developmental Disorders, 32 (1), 13-23. (T. Daley and M. Sigman)
Unstrange Minds: A Father, a Daughter, and a Search for New Answers
by Roy Richard Grinker
“Unstrange Minds begins with Roy Richard Grinker's personal story: his family's battles with the school system, the rare orchid his daughter Isabel plucked at the Smithsonian, and a day in Monet's garden that changed Isabel forever. But because Grinker is an anthropologist as well as a father, Unstrange Minds takes us across the globe-to South Korea, South Africa, Peru, and India…” We thoroughly enjoyed our time with Dr. Grinker and are pleased to have played a role in his quest for a deeper understanding of autism and the question of whether it is more prevalent now than in the past. We recommend this book to families and professionals wishing both to understand more about autism as well as those interested in cultural aspects of the disorder—such as its impact on families in India. AFA has a copy in our library, which can be borrowed by those in Delhi. See the August 2007 Autism Network for a review of the book.
Characterizing and Improving Face-Processing Skills in Children with Autism