Autism & its challenges, an Indian parent's perspective - My Take by Wing Commander Prashant Singh
April 9, 2019
This week, in My Take, Wing Commander Prashant Singh shares the learnings and challenges of raising a child on the autism spectrum.
Two articles in the newspaper caught my attention one morning. One was an interview with Dr Shyama Chona, where she discussed the peculiarities of autism and what sets it apart from other disabilities. The difference primarily stems from the uniqueness and width of the associated symptoms and behaviours that are typical to autistics. Though there can be sub-categorised into high, middle and low functioning, the perceptual differences are evident only to specialists. In most cases, even parents cannot judge the extent of problem and hence, do not take recourse to therapy on time. This often leads to a deterioration in the condition.
As highlighted by Dr Chona, institutions like Tamanna ,School of Hope and Action for Autism are few and far between. Having been an affected party for the last 13 years, I have had to face this problem of systemic inadequacy. While the attention to disability has increased considerably over the last 10 - 15 years, more needs to be done regarding establishing institutionalised caregiving and therapy for autistic individuals.
The matter does not end at this. While most other disabilities necessitate periodic attention when it comes to personal caregiving, autism requires direct one-to-one contact and therapy. The issues are more acute in severe cases, where things apparently seem normal but the latent mental condition of the individual can be far from normal. To get the person out of his world into the world that is deemed normal by so-called normal beings, is a task few are skilled to undertake.
As a parent I would not be able to say confidently that I am able to get my child out of his shell, despite many attempts to keep him engaged as far as possible. These periods of seclusion seemingly have the potential to cause considerable damage. Adverse behaviours can be acquired if not watched and managed in time. Therapies like the TEACHH, ABA and Lovaas methods have been recommended for autistic conditions, but they require highly trained therapists. And something more than this is essential - sensitivity. As a teacher connects with the student at a sub-conscious level, a skilled therapist is able to appreciate the nuanced symptoms of the person suffering from autism and can create a bouquet of interventions comprising occupational, diet, speech, physio, behaviour modification therapies, etc. which are centred around the individual.
The second article I read was on the Avaz App. Kudos to the inventors, who identified the need and were able to come up with a design after multiple iterations and presumably considerable number of failed attempts. It goes to prove that technology can be a major enabler in dealing with disability. Other than caregiving, educational and gaming tools like Avaz, Microsoft Kinect, flashcard apps or even Quizlet can go a long way in providing requisite direction and engagement to the differently-abled. While the lack of human intervention is a point of consideration, designs with customisable solutions with voice or actions of the parents and educators programmed within the environment can enhance the efficacy of the impact, especially at beginner and intermediate levels. For adults too, technology devices can come to the aid by voice and emotional responses through touch or motion activated sensors.
The major issue here is the financial viability of such technology products. Since the costs of development are high and the products require continuous upgrades, this works out to be expensive. While institutions can purchase these apps and make them available to students, for an individual to buy them becomes prohibitive from the price point of view. Games and toys with tactile and sensory activation logic can also be of great help for these children, but here again costs come into play. At times, the poor returns on investment from the final product result in low levels of research and development in the domain.
Besides these, a major issue is the integration of autistic children and adults in the society. Having been to several institutions in search of treatment, the stark difference in sensitivity to the issue of disability between north and south India is evident. This may be a subject for further research, but the approach to such disabilities is apparently more positive in cities like Bengaluru, Mumbai, Hyderabad, and Chennai. The awareness regarding autism in north India itself is relatively scarce. Barring a few centres, doctors and therapists, most of those concerned are not familiar with issues specific to autism. The inability to communicate with the disabled person is perhaps the major barrier in this regard.
As brought out by Dr Chona, inclusive education may not be possible for all students, especially due to the difference in learning abilities. The promulgation of contemporary regulatory mechanisms to increase the acceptance of people with disabilities in the society are laudable, but practicability becomes an overriding factor and the intended objective is not achieved. Besides the extremely costly and unaffordable resource intensive therapies, tools and equipment, the investments in term of time is considerable too. Research shows that almost 8-10 hours of individualised therapy daily could bring visible change in autistic children admitted in early intervention centres. The availability of such wherewithal at centralised locations is considered essential to deal with disabilities like autism.
I feel that a community-based approach can help in alleviating some of the problems associated with the autistic conditions. It is the parents and the therapists who understand the behaviours the best. They also understand that it is not only a matter of few hours, days, or months. It is a lifelong journey that needs to be made by the parents and the immediate family. Support of the community of like-minded people becomes essential as recourse to solving common problems. Groups on social media are abuzz with activities and engagements at an interpersonal level could reduce the gap between the desired and available support mechanisms for dealing with disabilities. Events like social occasions, sickness of parents or caregivers, vacations at school, etc. are some such situations where mutual support could be of assistance.
Autism affects not only the cognitive development of a person, but several other indicators of mental, social, verbal and psychomotor development too. Early identification, personalised intervention, community-based approach, systematised assistance and use of technology are some of the methods by which the impact can be mitigated. Needless to say, only a positive mindset, diligence, patience, dedication and deep sense of commitment in caregivers and therapists can help the individual overcome the hurdles and lead a dignified life that every human being deserves.