Reflections on Care by an ‘Autism Mother’

By Shubhangi Vaidya

Nearly a decade ago, I wrote a small article titled “Cutting the Umbilicus” for the journal, Autism Network. Written in a humorous vein, the article brought out the anxieties of an Autism Mother (myself) caught between perceived maternal duties and responsibilities and her search for self-development and professional growth.

Recently, I got a wonderful opportunity to travel abroad for a conference. My first reaction was, “What a pity! I’ll never be able to go. Who will take care of the kids?” When a dear friend actually offered to take care of them, the question changed. “How can I just abandon them for my own pleasure? Am I a bad mother to think of my own goals?”

My hyperactive mind played out all the terrible scenarios: “The plane crashes, the poor kids are left orphaned. My autistic son is so traumatized by my going that he falls violently sick and perishes calling out my name. His brother meets with a fatal accident crossing the road, and I cannot even attend to him…My beautiful family is wiped off the face of this earth…and all because of my selfish insistence to go for this trip!!” (Vaidya, 2008: 6)

While I was equally concerned about the welfare of both my boys, the feelings of anxiety and concern with regard to my son who has autism were more acute. Reading the piece years later and revisting the emotions that prompted me to write it, the intensity of the care relationship is apparent. My own research indicates the sense of indispensability that mothers of children with disability confer upon themselves; their conviction that it is only their love and care that their child can count upon in a cruel and judgmental world (Vaidya, 2011, 2016).

 Fortunately, I returned in one piece and the children came to no grief. Even my son with autism ‘survived’ the ordeal and his delight at welcoming me back home was truly a joy to behold. Over the years, there were more trips, more experiences, more learning. I learned to theorise my personal experience of the often conflicting demands of care and self-care through my critical engagement with feminist and disability studies scholarship. The historical association of Autism in western countries with the construct of the ‘Refrigerator Mother’ is well documented. This formulation (subsequently discredited) associated the child’s ‘withdrawal’ from the social world with the inability of the mother to provide the nurturant warmth her child needed to grow normally. The most powerful exposition of this view found expression in the rather direly titled book, The Empty Fortress (1967) by the child development specialist and Holocaust survivor, Bruno Bettelheim. Within non-western contexts, too, mother-blaming, particularly for conditions like autism with its associated behavioural difficulties and challenges, is par for the course, and the unusual, challenging behaviours of the child are viewed as the consequence of maternal incompetence. The manifestations of the condition in the form of socially inappropriate behaviours lend themselves easily to the idea that the child has not been properly trained or socialized; if the mother is in full-time employment, she is made to feel even more guilty and inadequate. Many mothers (myself included) attempted to challenge this narrative and create awareness about the condition by bringing on board our knowledge, understanding, and experiences of a lifetime of caring for and about our children, and positioning ourselves as their advocates and ‘voices’. Autism advocacy across the world has largely been driven by families.  However, in our zeal and passion to secure for our children the rights and acceptance that they so richly deserve and are so frequently denied, we run the risk of appropriating their voices, seeing them as extensions of ourselves. This can be detrimental to the mental health of the caregiver and the autonomy and adaptive skills of the recipient of care. As I noted in the article, I had begun to realize how my attachment to my children, especially the one with disability, was becoming obsessive and controlling. We all needed a break.

As a mother, it was important for me to learn to let go. With a regularly developing child, one has to do so, as he or she starts school, makes friends, and becomes autonomous. With an autistic child, it is the parents, particularly the mother who is the carer, playmate, teacher, constant companion. We therefore come to believe that we are indispensible, and we very probably are.

However, and this is a very big however, the responsibility of prolonged care for children and adults with complex disabilities like Autism, continues to be vested with families, who are by now aging and very likely to show signs of wear and tear. As any parent will share, the omnipresent question, “What will happen when we are gone?” gnaws away at one’s consciousness. Children with disabilities will one day become adults with disabilities. The absence of suitable education, employment, and supported living options is too obvious to state. Opportunities for social interaction, community activities and engagements, friendships, intimacy and sexual relationships are severely curtailed. The very real possibility of the autistic adult just not having anybody who understands, values, and cherishes him/her is unutterably painful. Anticipating this, I wrote:

We must therefore prepare the child in advance to spend time without us, to make new bonds, to have more ‘significant others’. We owe it to them, and ourselves.

Fostering such relationships and connections requires concerted efforts. Over the years, my son, now a young adult, has developed a circle of friends, teachers, and ‘Uncles and Aunties’ (parents of other young persons with autism) who understand, value, and cherish him. He (and his family) are fortunate to live in a time in which conditions like Autism have finally registered on the radar of state and society, and the future for young people like him does not appear unremittingly bleak. Our long-term association with a parent driven NGO providing services for persons with autism has opened many doors and helped foster a sense of community and solidarity with similarly placed individuals and families. The overwhelming dependence on family and kinship which is becoming untenable against the backdrop of urbanization, mobility, and globalization is thus expanding into wider circles of support and friendship. The explosion of the social media and growth of ‘virtual communities’ that transcend geographies is also an important development opening up opportunities for experience sharing and mobilizing.

Crucially, the ‘equation of care’ has also changed. My son is not merely a recipient of care but also renders care through his participation in the affairs of the home. Making the morning tea, rustling up his favourite Macaroni of an evening, preparing the shopping list for an increasingly forgetful mother, he is not a ‘disabled dependent’, but a valued and valuable member of the family unit. Even persons with very high support needs, who may have difficulty in ‘contributing’ to the community in the conventional sense of the term, bring value into the lives of their families and communities in multiple ways. Reflecting upon the pros and cons of pre-natal screening for Autism, Simon Baron-Cohen, the eminent autism expert, makes a case for the intrinsic value of all human beings irrespective of (dis)ability:

I have a sister, Suzie, who is in her 40s, and has profound learning difficulties and physical disabilities. [   ] Yet she enjoys people, enjoys simple pleasures, and has a quality of life. She laughs, she cries, she sings, she jokes. My relationship with her is among the richest I enjoy. I am glad that she is alive and that she was not screened out of existence before birth and that my parents did not opt to terminate her life. People don’t have to earn their right to life by having the skills to make a contribution. They have a right to life. Period.

Relationships of care, which have the potential for becoming disempowering to the ‘devalued’ recipient and exhausting and depleting to the long-term care giver, can be transformed into relationships of mutuality and interdependence. My engagement with disability studies imbued me with a nuanced understanding of both the constructed nature of the category as well as the validity of embodied difference. Simultaneously, the support and encouragement that I was fortunate to receive from the wider community including colleagues at work, neighbours and friends and, of course, the growing ‘disability community’ enabled me to understand and respect my son’s difference and, by extension, all manner of other human differences. Acceptance and respect are at the core of an affirmative and joyful relationship between the giver and recipient of care, and cultivating these attitudes is never a finished business. Reflexivity about one’s attitudes and values is critical, and I have found my own understanding about my young adult changing and developing even as he changes and asserts his own agency and personhood. It is by foregrounding the value and humanity of the other, irrespective of (dis)ability, that care becomes transformative and empowering, laying the foundations for a more humane, accepting world.

References
Baron-Cohen, Simon (2009) ‘Autism is not Cancer’. Accessed on 26-8-2017.
Bettelheim, B. (1967) The Empty Fortress. New York: The Free Press.
Vaidya Shubhangi (2016) Autism and the Family in Urban India:Looking Back,Looking Forward. Springer, India.
Vaidya Shubhangi (2011) “Mothering as Ideology and Practice: The Experiences of Mothers of Children with Autism Spectrum Disorder” (2011) in Michelle Walks and Naomi McPherson (eds) An Anthropology of Mothering. Bradford, ON: Demeter Press. Pp. 226-239.
Vaidya, Shubhangi (2008) “Cutting the Umbilicus” Autism Network 3 (3), 6.

Bio:
Shubhangi Vaidya is a sociologist by training and presently works in the School of Interdisciplinary and Trans-Disciplinary Studies at the Indira Gandhi National Open University. She has published in the areas of disability, gender, and culture and is the author (with Anu Aneja) of Embodying Motherhood: Perspectives from Contemporary India (2016, Sage-Yoda Press) and Autism and the Family in Urban India: looking Back, Looking Forward (2016, Springer India).

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