The child sits in a corner, aloof and not looking at anything. It is as if he perceives the world from behind a glass wall. It becomes quite impossible for them to connect to anything on the other side of the wall. Even the closest relatives are a riddle to them. They see them, they hear them, but from a distance.
We were at the Jewel Autism Centre in Kottayam (1), run by Dr Jameson Samuel and his wife, Dr Jency Blesson. Jewel Autism Centre is a clinic founded in 2008 to fill in the gaps in a child’s developmental history. Jewel Autism Centre is a unique interdisciplinary child developmental therapy clinic in India specially meant for children with autism spectrum disorders and learning disabilities.
Dr Jameson Samuel has close to two decades of experience as an Occupational Therapist & Child Psychologist with the World Health Organization. He voluntarily left his job to dedicate his time and efforts to ensuring a normal life for kids with autism. He is a consultant and advisor for various organisations in Europe and Asia in autism. In addition, he works as a resource person for various child development and educational centres in India. Dr Jency Blesson, a PhD in Molecular Biology, was the Head of R&D of a leading drug company in Kerala. She has several papers in peer-reviewed international journals and has a gene to her credit in American Gene Bank. She looks after the Administration department, Research and Development team, Recruitments, International and National collaborations of this Centre.
We spoke to Jency for a long time, trying to understand the disorder and what is being done in the Centre to bring in changes in the patients enabling them to overcome their condition. I summarise below what I learned.
Autism spectrum disorder (ASD) is a set of neurodevelopmental disorders that typically appears during early childhood. It is characterised by difficulties in social interaction, communication, restricted and repetitive interests and behaviour, and sensory sensitivities. It is called a ‘spectrum’ disorder because it is influenced by different combinations of genetic and environmental factors and affects people differently and to varying degrees. ASD occurs across all ethnic, racial, and economic groups(2). The characteristic behaviour pattern includes avoiding eye contact, problems with emotional control, inability to empathise with others and a dampened range of activities and interests. ASD occurs in about 1–2% of the population.
A set of genes and genetic pathways contributing to the formation, stabilisation, and maintenance of functional synapses are associated with ASD (2). This linkage potentially promises possibilities for new therapeutic interventions. Risk is enhanced by having genetic conditions like Down Syndrome, Fragile X Syndrome or Rett Syndrome. Persons with ASD generally have difficulties in Communication and Social Interactions. They also show restricted interests and sensitivities to sensory inputs. A person with autism may show some of these signs to varying degrees.
An autistic individual may have trouble conversing and interacting with others. Recurrently repeat words or phrases, they may be obsessed with specific topics, such as numbers, details, or facts. They may also be fascinated with moving objects and are easily disturbed by changes in their routine. Autistic people may be both hyper-sensitive and hypo-sensitive to a broad class of stimuli. ASD may also be onnected to intellectual disability, epilepsy, gastro-intestinal issues, ADHD, dyspraxia, anxiety or depression.
Autism has been treated either in a focused manner concentrating on specific aspects or comprehensively (2). The first approach includes prompting, reinforcement, discrete trial teaching, social stories, or peer-mediated interventions. These are designed to produce improvements in specific aspects and used for a limited period to demonstrate a change in the targeted behaviours. On the other hand, the comprehensive treatment models are a set of practices performed over an extended period, intense application, and usually have multiple components.
However, research has shown that treatment for children who have had an early diagnosis (by ages 2 or 3) is more likely to succeed than those who receive the treatment later. In the immediate context of a child, therapy is successful if the child can fulfil the therapist’s goals after a detailed diagnosis. On a broader outlook, the child’s improved functioning over a defined period in the areas diagnosed to be of concern may be a measure of success. I wanted to know why she left an excellent career in molecular biology to become the Joint Director of the Centre, essentially acting as its public face. She says: “Even when I was busy in my earlier career, I used to come to the Centre run by my husband on week ends and try to help. Those days we had no administrative support. I became a voluntary administrator. Then as the Centre began growing and the number of patients started increasing, I realised that my real calling was to take care of the autistic children. So I gave up my regular job, got some specialised training and joined the Centre in a full time capacity.”
She says that the source of her altruism comes from her mother and grandfather. Her grandfather would give away his pension to needy people without any hesitation. To my question about her most memorable patient, she says: “I remember a child and his mother. He would never ask for food. The mother insisted that that she would change this. One day she told him that she would not feed him unless he asked for food. After a long time , late in the night, the child demanded food. That was a change!”
She believes that her work does not affect her family life because the entire family is involved in running the Centre. Her daughter, Jewel, chose to become an intern at the Centre, spending time after school. She helps with administration and documentation. The documentation is impressive since CDs on each of the 280 odd patients are routinely prepared for review.
In the book “Through the Glass Wall: Journeys Into the Closed-Off Worlds of the Autistic,” Howard Buten writes (3) “The psychiatrist Leo Kanner, who named the condition in 1943, probably had the simplest, most telling point of view. His distinguishing descriptive criterion was the “air of aloneness” that he observed in these children-the quality they had of behaving as if they were absolutely alone when they were not alone: not noticing others, not reacting to others. To me, it is the presence of this invisible wall that most distinguishes autism from other handicaps and pathologies, and the reason for which autism has often been classified as a communication disorder.” References
Hye Ran Park et. al A Short Review on the Current Understanding of Autism Spectrum Disorders, Exp Neurobiol. 2016 Feb; 25(1): 1–13.Published online 2016 Jan 28. DOI: 10.5607/en.2016.25.1.1
Through the Glass Wall: Journeys Into the Closed-Off Worlds of the Autistic” Howard Buten (2004) Bantam