The discovery that one’s child has a life-long developmental disability is a life-changing one, profoundly affecting the life- script and heralding a voyage of discovery and learning that no classroom can ever teach. This article is a reflexive take on my engagement with disability as the mother of a young man (17 years old at the time of writing this article) diagnosed with Autism Spectrum Disorder, and the search for an appropriate and enabling education which respects and celebrates his difference. The aim of the article is to provide a parental perspective to pedagogic discussions on disability and inclusion. The parents are stakeholders in their children’s educational journeys and especially in the case of children with special needs and also act as interlocutors and advocates. They can serve as valuable allies in fostering a nuanced understanding of disability, not merely as a set of ‘defects’ that need remediation, but as a different way of being in the world that needs the space to flower and flourish.
‘Let’s start at the very beginning’, which, as the famous song informs us, is a very good place to start. My son V was diagnosed autistic in the year 2000 at the age of three. He was lucky to get an early diagnosis, because Autism Spectrum Disorder is a relatively lesser known diagnostic category in India and is frequently equated with ‘mental retardation’ or psychiatric disturbance. The core symptoms- a ‘triad of impairments’ in the areas of language or social communication, social interaction and imagination - are often dismissed as the consequences of the child’s ‘introverted’ nature, bad parenting or cultural beliefs that boys are generally late speakers. Autism is a ‘neuro-developmental’ disorder resulting in atypical brain development, whose signs and symptoms usually become apparent when by the time a child is two to three years old; i.e. the period when language and sociality develop at a rapid rate in a typical toddler. It is known as a ‘spectrum’ disorder because of the different degrees of severity with which the symptoms manifest in an individual; while some people on the ‘spectrum’ are able to get by with a minimal degree of support, others may have severe disabilities and high support needs. (www.autismspeaks.org).
V was an alert, inquisitive baby whose motor milestones were age appropriate. He was an unusually silent baby though and did not babble or point or use other non-verbal means to communicate or share attention like his elder brother did. He would scream at the top of his voice and throw terrifying tantrums when he was thwarted; a fact that was reassuring and unsettling in equal measure. However, as time went by, it became quite clear that there was something decidedly unusual about him. At first, we thought he might be deaf. Why did he not respond to his name and appear immune to what was going on around him? We dismissed the idea when it became apparent that he was extremely attentive to sounds that attracted him like a certain television jingle. Although he did not seem in the least bit interested in other people including his own brother, he would ‘use’ them for his own ends; climbing on top of them to reach a jar of sweets or guiding their hands towards the door of the fridge when he wanted water. “This baby knows what he wants and knows how to get it!” a friend said jocularly. We laughed uneasily. He did not babble ‘baba’ or ‘dada’ or ‘mama’ unlike other children; his first words were from a TV commercial for a chewing gum. “Bee bee Baabo” (big big Babool) he sang, to our amusement and delight. However, contrary to our expectations, his speech did not “take off” and even on his second birthday, he did not speak the words a ‘normal’ toddler usually does.
An observant pediatrician, during the course of a routine visit (in which I blurted out my concerns) suggested that I take little V to a child psychologist for an informal meeting. The psychologist had two little girls of her own and the three children played on the living-room floor while their mothers sat down for a chat. Observing the three toddlers at play, the stark difference between them struck me with the force of a body blow. The little girls excitedly showed their toys and tried to engage the ‘bhaiyya’ in play; he, on the other hand, was indifferent, and scarcely seemed to notice that they existed. He was fascinated by the wheels of their tricycle which he spun with intense focus and concentration and appeared to be in a world of his own. This ‘social disconnectedness’, in such
marked contrast to the overwhelming sociality of the little girls, is typical of the autistic condition. It would still be a few months before he received a concrete diagnosis, but the writing was clearly on the wall.
Acting upon the psychologist’s advice, I tried hard to draw V into ‘our’ world. I would sit down at his level, follow his interests, devise little songs and rhymes, make funny faces and try to catch his attention. ‘The wheels of the bus go round and round’ was our favourite song. Using his fascination for toy cars, I tried to teach him new words. ‘When you read, you begin with A, B,C, goes the song quoted earlier, but in V’s case it was a bit different. By the age of five he learned to read whole words without ever formally learning the alphabets. The walls of our apartment were covered with his early attempts at writing; he was fascinated by the words ‘Aggarwal” (which he saw displayed on ‘mithai’ shops in the neighbourhood) and ‘Venus’ (a cassette brand) and would obsessively write these words copying the distinct fonts and shapes of the letters with uncanny accuracy. It was apparent that he had a good visual memory and spatial skills even though he seemed unable to do the things that his age-mates learnt in order to “pass” the nursery admission tests, e.g. telling the names of family members, naming common fruits and vegetables etc. He could however reproduce his favourite advertising jingles and was more interested in the brand names of cars, soaps and soft drinks than the boring fruits and vegetables.
When the time came for admitting V to school, it became quite apparent that no ‘regular’ school would admit a child who could not speak ‘normally’ or sit still for a minute. He was prone to running away unmindful of danger and simply would not ‘listen’ or respond to what was being told to him. My experiments at admitting him to ‘regular’ playschools, in the hope that he would learn social behaviour from his peers, had met with mixed results. Before he was diagnosed, we sent him to the neighbourhood play-way. The ‘Aunty’ there told me as kindly as she could that he was not ‘normal’; he was not even scared of ‘Uncle’! Another playschool, run by an experienced retired nursery teacher, was a happier experience for the child; he was treated with affection and gentleness; but they too were baffled by his oddities and did not know how to address them.
We were convinced that the child needed a setting where his difference would not be stigmatized or construed as ‘deviance’; where trained and dedicated personnel with a clear understanding of the challenges of autism would work with his strengths and help him deal with his difficulties. The handful of ‘regular’ schools that claimed to practice ‘inclusion’ at the time were either too expensive for a middle-class family to afford or simply too far away. Some of the special schools we explored catered to mixed disability groups and were clearly not equipped to deal with a child with autism. We were lucky to eventually find a setting that opened its doors to V and helped him and his family to deal with the everyday challenges that a complex condition like autism brings in its wake. V was admitted into the day programme of ‘Open Door School’, a model school for children with autism run by the Delhi based NGO, Action for Autism.
Our decision to admit him into a special setting raised many difficult questions. Why did we want to ‘label’ such a young child ‘disabled’? Would he not ‘deteriorate’ in the company of other children with autism, especially those whose difficulties were very severe? Were we not depriving him of the opportunity to be with the so-called ‘normal’ children and the ‘normal’ society? These questions, but emerged out of an understanding of disability that viewed it as a ‘lesser’ state of being; a devalued identity that must be hidden away from the world or resisted at all costs. It implies that being amongst ‘normal’ children is the most desirable goal for children with disabilities and that good role models can only be found amongst the non-disabled. It implies that ‘special’ education is necessarily inferior and less valuable and just a means of ‘warehousing’ children who are ‘un-teachable’ in the mainstream classroom. As my understanding of disability and engagement with Disability Studies as a domain of scholarship deepened over the years, I realized that ‘inclusion’ in its real sense is a philosophy premised on acceptance and respect of difference. The exclusionary practices can and do exist even within the mainstream or ‘inclusive’ settings particularly in the absence of adequate sensitization and training of teachers and a school system where ‘toppers’ are rewarded and felicitated and the so-called ‘duffers’ ridiculed and punished.(the 2007 film ‘Taare Zameen Par’ beautifully captures this reality).
V has been at the Open Door for the past thirteen years. He is a smart and confident young man who is “different and proud of it”. Years of patient work in both: the individualized and group settings, using structured teaching methods and the most appropriate methodologies for children with autism, have yielded results. These methodologies were
suitably adapted to the local cultural realities and resources, and were thus, not exorbitantly expensive or impracticable to transact. The continuity of practices at home and at school was emphasized through frequent, intensive interactions with the parents and the thoughtful IEPs.
The school has opened up his world and expanded his horizons. He has made life-long friendships with the peers, the teachers and the volunteers, has a strong sense of identification and belongingness with his ‘Centre’ and has ample opportunities to participate in the community through field visits, excursions and participation in competitions and camps. He paints, cooks and enjoys music and has had the honour of rendering a song for the President of India, Shri Pranab Mukherji at the Rashtrapati Bhavan on the President’s birthday on 11th December 2012. Poignantly, the song he sang was Tagore’s ‘Ekla Chalo Re’, a singularly befitting choice for those who walk the path less trodden. Above all, he has never once been made to feel that his ‘disability’ makes him an inferior or less important person; rather, he has been taught to embrace his identity and make a common cause with the others like him.
As a parent and educator, life with V has taught me much. It has made me reflect deeply upon our received and, sometimes, uncritical notions of disability, exclusion/inclusion and pedagogy. ‘Inclusion’ that translates as mere physical inclusion, or accommodating the children with different needs under a common roof with scant regard for the particularities of their needs and backgrounds, must be critiqued. Creating a respectful and non-judgmental space, in which children of all backgrounds and abilities can learn together, demands both attitudinal and pedagogical preparedness for which rigorous and intensive teacher training is required.
In the domains of language and literature, which this journal specifically deals with, a condition like autism provides the teacher much food for thought. How should one transact the complexities and nuances of language with children whose impairments in social communication virtually define the disorder? The persons with autism, even the highly verbal ones, have difficulties with pragmatics, social conversations and conjecture (Lord and Paul, 1997). They also have difficulties with narrative. According to Tager-Flusberg (2004), even the persons with autism, who develop fluent grammatically correct language, can have difficulties with its functional use such as asking for help or asking questions to seek information. The autistic children may experience difficulties in constructing and comprehending stories, drawing inferences and imaginative thinking, with the result that they may find themselves excluded from the rich experiences of language learning and creative activities. Yet, language comprehension is an intrinsic part of learning literature, history, geography, math etc, and this aspect has to be addressed to ensure that it does not impact their overall learning.
A truly ‘inclusive’ classroom factors in these specificities and plans teaching-learning activities that benefit not just the child with difficulties, but all the children. A tall order indeed; but it is a part of the challenge and excitement of the teacher’s vocation.
In this article I have shared some personal experiences and reflections of parenting a child with disability and how these helped me better understand the philosophy of inclusion. Conditions like Autism and other learning disabilities are becoming increasingly salient in contemporary times with the expansion of education, awareness and information. V benefited from a ‘special’ setting which he could access due to his spatial and social location. Yet thousands of children are deprived of even the most fundamental facilities and opportunities and cannot wait for the creation of special services that will address their needs. Inclusion into the already existing school system is the only practical alternative; teacher sensitization and training, and the creation of inclusive learning environments are the need of the hour (Vaidya, 2010). Only then can we ensure that a generation does not fall through the cracks; ‘Kho na Jaaye Ye Taare Zameen Par’.
Autism Speaks Inc.(2014).What is autism? Retrieved April 29, 2014 fromhttp://www. autismspeaks.org/what-autism.
Lord, C., & Paul, R. (1997). Language and communication in autism. In D. Cohen & F. Volkmar (Eds.), Handbook of autism and pervasive developmental disorders (pp. 195- 225). New York: Wiley.
Tager-Flusberg, H. (2004). Strategies for conducting research on language in autism. Journal of Autism and Developmental Disorders, 34, 75-8
Vaidya, S. (2010) Creating Inclusive Learning Environments for Children with Autism Spectrum Disorder. Paper read at the Pan Commonwealth Forum for Open Learning (PCF6), Kochi, November 28, 2010.
Shubhangi Vaidya, PhD, teaches at the School of Interdisciplinary and Transdisciplinary Studies, IGNOU, New Delhi. A sociologist by training, her research interests are in the domain of disability in a cross-cultural perspective, the contemporary family and gender studies.