Creating Global Awareness for Autism
Dr Gauri Divan is a developmental pediatrician associated with Sangath. She primarily works in the areas of early child development, childhood developmental disabilities and adolescent health. Gauri is the PI of a Grand Challenges Canada funded project, PASS Plus, that primarily seeks to develop a community-based method for the early detection and identification of children affected by autism.
In 2008, April 2nd was declared Autism Awareness Day by the United Nations General Assembly.1 The goal was to promote awareness for a developmental disorder which was being increasingly recognised in high resource settings but still remained ‘hidden’ in most communities in the world.
As part of a project supported by Autism Speaks, in 2009, we began to explore the lived experiences of families of children with Autism in the state of Goa, in West India. We wanted to understand the early experiences, the moment of recognition, and the challenges in their path to accessing diagnosis and services. With this information we hoped to identify the necessary ingredients of an accessible intervention for families with a child with Autism.
Interestingly, our families’ experiences matched those from other parts of the country as well as countries as diverse as the US, Australia and Israel. Thus, parents described the initial struggle to understand the difference in their child who seemed to be developing normally but did not quite ‘fit in’; the frustrating lack of awareness in the professional communities - both medical and educational; the challenges in acquiring an accurate diagnosis to finally hearing the unfamiliar term ‘Autism’; and grappling with its meaning and implications. 2-3
Emotional distress was a common refrain with shock, denial and even contemplation of self-harm being described. As one mother poignantly shared “When I came to know about Autism, it was a shock to me, my husband went totally mad, I was so frustrated that I felt like the three of us will go and commit suicide”. Another described her husband’s initial dependence on alcohol to cope with his helplessness. This sense of isolation and lack of support plagues many families since the majority of services are specialist based and situated in large metros greatly limiting their accessibility and affordability for most families in India.
Against these odds, families, innovatively used available means such as extended family support systems, empathetic professionals and faith-based organisations to bolster their personal resources in their journey to understanding the diagnosis, what it meant to their child, their family and their future. Some parents supported themselves by learning as much about Autism as they could, while others created a personal ‘space’ to safeguard being overwhelmed by caring for their child; for others strengthening their faith allowed them to perceive their life with their child as a life–enhancing journey.
A key roadblock for most parents, also noted in a more recent study, is that of the stigma of having a child with a notable difference.4 This lack of understanding emerges from within families to neighbours, community members and even professionals. This often makes families withdraw from social interactions adding to the emotional burden for the parents.
This lack of awareness has to be tackled at multiple levels: 1) improving training across health professional cadres to integrate child mental health problems into curriculum, and 2) creating more public campaigns to bring Autism into the lexicon of daily life. The “Light it Up Blue” campaign (blue being the colour associated with autism) this year saw 101 iconic monuments across the world turn azure with a view to increasing awareness, but these activities often tend to be centred around larger cities. In South Asia, on the other hand Bollywood movies such as ‘My Name is Khan’ and ‘Barfi’ along with TV soaps and advertisements have started much needed and more open conversations about Autism. 5-6
Simultaneously there are initiatives like the one supported by a Grand Challenges Canada Global Mental Health grant. This has allowed the project team to create a “detection package” which includes a training module for community health workers and child care professionals. This package includes a short film (available to view on http://www.sangath.com/index.php) which allows the recognition of the possible unusual symptoms that some children with autism may have.
In the long term, we need to work towards an increased awareness of this disorder across all communities so that every family with a child with Autism has access to accurate information as the first step in their journey to receiving help.
- United Nations. (2008) Resolution 66/139. In: Assembly G, editor.
- Divan G, Vajaratkar V, Desai MU, Strik-Lievers L, Patel V. (2012) Challenges, coping strategies, and unmet needs of families with a child with autism spectrum disorder in Goa, India. Autism Res.190-200.
- Desai MU, Divan G, Wertz FJ, Patel V. (2012) The discovery of autism: Indian parents' experiences of caring for their child with an autism spectrum disorder. Transcult Psychiatry.
- Minhas A, Vajaratkar V, Divan G, Hamdani SU, Leadbitter K, Taylor C, et al. (2015) Parents’ perspectives on care of children with autistic spectrum disorder in South Asia – Views from Pakistan and India. International Review of Psychiatry.1-10.