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Parenting a Child with Autism in India: Narratives Before and After a Parent–Child Intervention Program

In many low and middle income countries where autism-related resources are scarce, interventions must rely on family and parents. A 3-month Parent–Child Training Program (PCTP) at Action For Autism, New Delhi, India is aimed at empowering and educating parents, encouraging acceptance of their child, and decreasing parent stress. Forty couples were asked to describe their child with autism using the Five Minute Speech Sample (FMSS), an open-ended narrative method, before and after the program. Parents described a wide range of child behaviors, primarily social and cognitive skills. While all families were of a relatively affluent strata compared to the general Indian population, there were nonetheless significant differences in parents’ narratives based on their income levels. Coming into the program, parents with relatively less income focused on their child’s immediate and material needs, while higher income parents discussed their parental roles and vision for society. After the PCTP, parents were more likely to reflect on their child beyond comparisons to ‘normality,’ and beyond the here and-now. Mothers were more likely than fathers to reflect on themselves and their relationships with their child. Understanding parents’ experiences and narratives is essential for the evaluation of interventions such as the PCTP, as Indian parents are incorporated into a growing global network of ‘parents of children with autism.’

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Autism centre opens in New Delhi (extract)

From Volume 4 Number 6

NEW DELHI, India: After ten years of struggle, the unveiling of Action for Autism's National Centre for Autism took place in New Delhi on September 8. Explaining the condition to the government of India was the biggest hurdle facing AFA in its effort to obtain land and financial aid for the new autism centre. Finally, Action for Autism managed to explain to the bureaucrats that autistic children do not have social or communicative skills. However, they can have normal or high IQs and tend to be hyperactive and repeat the same activity over and over again. So they need help. "We had lots of problems. It was very difficult to generate awareness with the government. It's good to see that we managed to get this centre finally," said Merry Barua, director of Action for Autism …

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Autism and the Family in Urban India

Looking Back, Looking Forward

© 2016
Shubhangi Vaidya 0

Indira Gandhi National Open University, Delhi, India

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First book-length study of autism and the family in India
Studies issues in sociology of the family that have received scant scholarly attention
Benefits parents and other stakeholders to gain a better understanding of their child, network with others and be aware of policies and programmes
Includes supplementary material: sn.pub/extras

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About this book

The book explores the lived reality of parenting and caring for children with autism in contemporary urban India. It is based on a qualitative, ethnographic study of families of children with autism as they negotiate the tricky terrain of identifying their child s disability, obtaining a diagnosis, accessing appropriate services and their on-going efforts to come to terms with and make sense of their child s unique subjectivity and mode of being. It examines the gendered dimensions of coping and care-giving and the differential responses of mothers and fathers, siblings and grandparents and the extended family network to this complex and often extremely challenging condition. The book tackles head on the sombre question, What will happen to the child after the parents are gone ? It also critically examines the role of the state, civil society and legal and institutional frameworks in place in India and undertakes a case study of Action for Autism ; a Delhi-based NGO set upby parents of children with autism. This book also draws upon the author s own engagement with her child’ s disability and thus lends an authenticity born out of lived experience and in-depth understanding. It is a valuable addition to the literature in the sociology of the family and disability studies.

The Right to Be Different: Autism and Advocacy in Urban India

East Asian American Parents of Children with Autism: a Scoping Review

Parenting in context: parents’ experiences of caring for a child with autism in Bangladesh

Action for Autism
Adults with autism
Autism as a diagnostic category
Awareness of autism in India
Care work by parents
Caregiving in urban Indian families
Disability as a social construct
Disability in everyday life in India
Group homes and sheltered workshops
Personhood of an autistic child
Role of siblings as care-givers
Urban families in India and autism
learning and instruction

Table of contents (6 chapters)

Front matter, mapping the terrain: examining discourses on disability and the family.

Shubhangi Vaidya

“There Is Something Wrong with My Child”: Encounter with Autism

Unending care and an uncertain future: the challenges of parenting a child with autism, shrinking circles of support: the urban family in transition, disability, society and state: new mobilizations and movements, conclusion: looking back, looking forward, authors and affiliations, about the author.

Shubhangi Vaidya graduated in sociology from St. Xavier’s College, Mumbai. She completed her postgraduation and research degrees at the Centre for the Study of Social Systems, Jawaharlal Nehru University, New Delhi. Shubhangi is presently a faculty member in the School of Interdisciplinary and Trans-disciplinary Studies, Indira Gandhi National Open University (IGNOU), New Delhi, where she is engaged in developing open and distance learning programmes. Her current research interests include disability studies, women’s studies and labour studies. She has published both scholarly as well as general articles and book chapters and is co-author (with Anu Aneja) of a book Embodying Motherhood: Perspectives from Contemporary India (Sage-Yoda Press, 2016). Alongside her research and teaching roles, she is an advocate for the rights of persons with disabilities and their families; and is actively involved in awareness-building within the community.

Bibliographic Information

Book Title : Autism and the Family in Urban India

Book Subtitle : Looking Back, Looking Forward

Authors : Shubhangi Vaidya

DOI : https://doi.org/10.1007/978-81-322-3607-8

Publisher : Springer New Delhi

eBook Packages : Social Sciences , Social Sciences (R0)

Hardcover ISBN : 978-81-322-3605-4 Published: 11 October 2016

Softcover ISBN : 978-81-322-3864-5 Published: 30 April 2018

eBook ISBN : 978-81-322-3607-8 Published: 30 September 2016

Edition Number : 1

Number of Pages : XI, 180

Topics : Family , Developmental Psychology , Learning & Instruction

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Contact details:.

Merry Barua, Founder & Director
Action For Autism, The National Center For Autism, Sector 7 And 8, Near DAV Public School, Jasola Vihar
New Delhi - 110025
011 40540991; 011 40540992
[email protected]
www.autism-india.org
09:00 am - 05:00 pm

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Adults with autism in India: a mixed-method approach to make meaning of daily routines

Affiliations.

1 Westat, 1009 Slater Road, Durham, NC 27703, USA. Electronic address: [email protected].
2 UCLA Department of Psychiatry, NPI-Semel Institute for Neuroscience, Center for Culture and Health, 760 Westwood Plaza, Box 62, Los Angeles, CA 90024-1759, USA.
3 Action For Autism, Pocket 7 & 8, Jasola Vihar, New Delhi 110025, India.
PMID: 24998867
DOI: 10.1016/j.socscimed.2014.06.052

Although individuals with Autism Spectrum Disorder (ASD) have been diagnosed in India for over fifty years, virtually nothing is known about the social circumstances of adults, their daily lives, and their families. Where are adults with autism? How do they spend their time? Who are they with, and what are they doing all day? A mixed-method approach was used to obtain information on daily routines of 54 adults with ASD living in New Delhi, India, and about parent levels of stress associated with these routines during a study collected from January through June, 2013. Whether or not they attended a structured setting during the day (59% did so), adults engaged in some 20 activities both inside and outside their home. Contrary to our expectations, most adults were not "hidden" and were out in public at least on occasion. Higher functioning adults were more likely to attend a structured setting, but parents described challenging behaviors, both adult and parent preference, and lack of options as reasons that adults stayed home. The amount of time adults spent outside their home was not associated with parent reported stress, but stress was significantly higher for mothers who were employed. Most families described adaptation to caring for their adult children. A partnership with an Indian nongovernmental organization provided mechanisms to amplify our research findings, making them meaningful to our participants and others.

Keywords: Autism Spectrum Disorders; Daily routine; Disability; Ecocultural; India.

Publication types

Research Support, Non-U.S. Gov't
Autistic Disorder / epidemiology*
Autistic Disorder / psychology*
Communication
Interpersonal Relations*
Parents / psychology
Socioeconomic Factors
Stress, Psychological / epidemiology

Discover NGOs
Claim Your Organisation

Action for Autism

Works towards empowering people with autism through research, training, advocacy and outreach programmes

Bronze Certified 2023

Delhi, Delhi

Action for Autism (AFA) is a research, training and advocacy organisation which provides support and services to people with autism and those who work Read more with them in South Asia. By creating opportunities for education, employment and socialisation for people with Autistic Spectrum Disorder (ASD), works toward an inclusive society. AFA's mission is to enable every person with autism to live as a productive member of the community by providing training, guidance and resources to help them achieve their potential. Through collaboration with its various wings such as Open Door Clinical Services (Direct services for individuals with autism and their families), AADHAAR (Vocational Centre for adults with autism), Anvay (Research and Training), AAHAAN (Publications), AAILAAN (Advocacy), AFA addresses the individual needs of people with autism, their families and the autism community as a whole.

Demographies Served

Specially Abled
Child & Youth Development
Right to Information & Advocacy
Skill Development
Health & Family Welfare
Vocational Training
Mental Health

Work and Employment

Action For Autism (AFA) operates the Aadhaar Vocational Centre, a model-sheltered workplace specifically designed for adults with autism that aims to impart "work behaviour training" which will be helpful when the person decides to opt for open employment.

Residential Centre

IAFA has set up Ananda, an assisted living centre for adults with autism which is located in the village of Gairat Pur Bas, Gurgaon. This centre provides a space where adults with autism can work and live peacefully.

It started the 'Research on Autism and Families in India (RAFIN)' project in 2010 through partnerships with the University of California, Los Angles (UCLA). It has also partnered with the University of Cambridge and MIT Laboratory for Vision Research to conduct studies on autism.

One of the first studies with the MIT laboratory was to characterise the top-down processing in individuals with autism relative to controls and to develop therapeutic interventions for improving any deficits found.

Assessments

The diagnostic team at AFA conducts screening and diagnostic assessments for individuals across all age groups and across the spectrum of autism. It also conducts functional assessments, which helps determine the existing skill sets and the future goals of the autistic person.

Educational Programmes

This programme aims to increase awareness about autism amongst professionals (paediatricians, psychiatrists, psychologists, educators, and others) to ensure that all children with autism receive an early and accurate diagnosis.

Apart from awareness programmes, It also conducts family counselling sessions. Action For Autism’s Parent Child Training Programme (PCTP) is conducted three times a year with each session spanning a period of approximately nine to twelve weeks.

Inclusive Educational Facilitation

In 2008, AFA worked with the Ministry of Human Resource Development, Government of India, to develop a manual on inclusive education for children with autism for the Sarva Siksha Abhiyan (SSA). Since then, AFA team members have been conducting regular workshops and training programmes to train teachers to understand the strengths and preferences of children with ASD and achieve better learning outcomes.

AFA has successfully placed many children with autism in mainstream schools and continually works with these schools to facilitate and sustain their inclusion.

Leadership Team

Member Governing Body

Director Finance and Operations

Demographics & Structure

Political & religious declarations, registration details.

DL/2016/0102756

AAATA0663KE20161

AAATA0663KF20081

Not Available

National Centre For Autism, Pocket 7 & 8, Jasola Vihar, Delhi, 110025

Other Details

Non-profit Society

http://www.autism-india.org/

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NGO Reporter : NGO in India : Indian NGOs Directory

Directory Website of Indian NGOs

ACTION FOR AUTISM

Particulars :.

Name : ACTION FOR AUTISM Chief Functionary : Mrs Merry Barua Chairman : Dr Lekha Nair Secretary : Mrs Merry Barua Treasurer : Mrs Reeta Sabharwal Umbrella/Parent Organization : Action For Autism

Contact Details :

Telephone : 011-40540991: 011-65347422 Mobile No : 09313372558 E-mail : [email protected] Website Url : http://www.autism-india.org Address : Action For Autism, Pocket 7 & 8, Jasola Vihar, New Delhi -110025 [codepeople-post-map] City : New Delhi State : Delhi

Sector/ Key Issues :

Children, Differently Abled, Education & Literacy

Operational Area-States :

Operational area-district :.

South Delhi

Details of Achievements :

 Successfully raised awareness among medical professionals leading to earlier diagnosis  Represented India in the launch of the World Autism Organization  Initiated the observation of Autism Week across the country  Successfully lobbied to include autism in legislation  Successfully lobbied for a government recognized Teacher Training Programme  Launched the first website on Autism in Asia  Produced the first of films on awareness and teaching methods  Started the first autism-specialist school in South Asia  Developed teaching methodologies  Started the first teacher training programme  Produced the first of manuals and training materials  Facilitated the start up of support groups in different parts of the country  Published Autism Network the first specialist journal

First Registration Details :

Unique Id of VO/NGO : DL/2009/0015869 Registered With : Registrar of Societies Type of NGO : Society Registration No : s/27006 of 1994 City of Registration : Delhi State of Registration : Delhi Date of Registration : 29-11-1994

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A Case Study of Autism: Paul, 3 Years Old

Autism Blog
A Case Study of Autism:…

Arun was brought for consultation with Dr. A M Reddy by his parents. He was about 4 years old, the second child to the parents. Even while he was being brought into the room, we could hear his loud wailing. It took some time for the child to calm down and later we could observe that the child was very restless. He was running around the room, pulling down cushions and generally creating chaos in the room and mother was quite harried in trying to control him. He was diagnosed with ASD (Autism Spectrum Disorder).

What is ASD?

Autism or Mutinism as it was earlier known was thought primarily to affect communication skills but with more studies, it was understood that autistic children display a wide range of symptoms, hence the word “spectrum” was added to Autism disorder. Autism is a complex neurodevelopmental disorder which affects a person’s social behavior and communication skills.

Why it occurs?

The exact reason why ASD occurs is not known but many risk factors have been identified like age of the parents, poor ovulation, infections or exposures to harmful chemicals or radiation during pregnancy, thyroid, diabetes type of hormonal disorders, birth injuries, infections in childhood, vaccinations, etc.

What are its symptoms?

As its name suggests, ASD displays a myriad of symptoms but some of the common symptoms of ASD is lack of speech. While some children have no speech, in some children speech that was developed before may regress. Many of them do not prefer to mingle with children of their age group. Repetitive action, physical restlessness, inability to understand emotions, mood swings like sudden bouts of excitement, crying without any reason, are few symptoms displayed by many autistic children.

Aggressive behaviors like self-harming, head-banging, tantrum-throwing, biting/pushing others, destructiveness, can be displayed by few. Response to name call, having sustained eye contact, unable to understand commands, stereotypical actions and stimming are some of the common symptoms exhibited by many.

Coming back to the case of Arun, a detailed case history was noted down by our doctors, a summary of which is given below.

He is the second child and the age difference between both the siblings is seven years. After the first child was born, the mother developed hypothyroidism for which she was on thyroxine 50 mcg daily tablets. No history of abortions or contraceptive use was reported. Father was apparently healthy. The age of the parents was 35 and 38 years respectively during conception. She conceived naturally and pregnancy was apparently uneventful. But on deeper probing few differences were found out between both the pregnancies.

While during the first pregnancy the parents were in India, but during second there were in the United States. She was advised to continue with the same dosage of thyroxine and during 6-7 months of the pregnancy, she was given flu and T Dap vaccine. The child was born of emergency C – section as the water broke early. The birth cry was normal and seemingly the child was progressing well but after his first birthday, the child had a bout of severe gastrointestinal infection when they visited India where he was hospitalized for three days and given medicines.

Parents were worried that he seems to put everything in his mouth and his favorite items were paper, cloth, wall plaster. His demands have to be met, else he used to become very upset. Emotional connectivity towards parents was less. He would not follow simple commands and it was becoming increasingly difficult for the parents to manage him. With therapies, his eye contact improved a little and was able to follow a few simple commands but the progress was slow.

He was a picky eater and liked crunchy foods. His bowels were constipated and he was not yet toilet trained. He was given Cuprum Sulph 10 M and was kept on regular follow up.

On the next visit to Dr. A M Reddy Autism Center , the parents complained that their child developed itching on the skin but his restlessness reduced slightly. The medication was continued for about three months during which the child’s anger reduced by 30%, his eye contact improved and he was no longer constipated. His itching too reduced in the meanwhile. A second dose was repeated and about six to seven months of treatment, he started saying few words, tantrum-throwing reduced and his habit of putting everything in the mouth was gone.

The dose was repeated in 50M potency. After about a year and half of treatment, he started interactive communication, giving relevant answers to questions and was doing much better. On the advice of Dr. A M Reddy, they placed him in normal school and he is doing well.

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