Come April 2, hundreds of thousands of landmarks, buildings, homes and communities across the world will light up in blue. Do you know why? It is in recognition of people living with autism and this year, the day has been marked as World Autism Awareness Day for Assistive Technologies, Active Participation. And not just that, all through the month, events and activities will take place to increase understanding and acceptance and foster worldwide support.
What is autism?
Mumbai-based psychotherapist, counsellor and adoption consultant Padma Rewari shares, “Autism Spectrum Disorder (ASD) is a lifelong neurodevelopmental condition, and is characterised by deficits in social communication and interactions, along with restrictive, repetitive patterns of behaviours, interests, and activities, and major defects in language development.”
According to her, the first signal is when the child fails to maintain eye contact, doesn’t respond when called and prefers to be in his or her own world. “Communication skills are majorly affected. Speech is delayed. There could be echolalia; social skill is a challenge, and the child would be into himself and solitary play. A child may show repetitive behaviours such as hand flapping, making peculiar sounds, etc. These communication challenges affect a child’s overall development,” Rewari adds.
ASD is a common neurodevelopmental disorder across the globe. All the epidemiological studies show a significantly higher number of boys than girls with autism. Professor Sheffali Gulati, Chief of Child Neurology Division, Faculty in charge, Centre of Excellence and Advanced Research on Childhood Neurodevelopmental Disorders, Department of Pediatrics, All India Institute of Medical Sciences, says, “The causes have a genetic component and some environmental factors. There are still no tests to ascertain if a mother is pregnant with an autistic child. But research on this is underway.” Prof Gulati adds that about 1 in 59 children has been identified with ASD according to estimates from CDC’s Autism and Developmental Disabilities Monitoring Network. “ASD is reported to occur in all racial, ethnic, and socioeconomic groups, and about four times more common among boys than among girls. In India, its occurrence is 1 in 89 in children of two to nine years.”
The symptoms of ASD are known to appear as early as infancy and in the first two years of life. Hence, identifying the child at an early age is essential for early intervention of autism. But unfortunately the average age at diagnosis of autism is usually three years, and hence there is a long delay between parent’s initial concerns and eventual diagnosis.
Her team at AIIMS has developed a current diagnostic and statistical manual based (DSM 5) based tool to diagnose ASD which was published on March 13, 2019, in PLOS ONE. It is in consonance with ICD 11 guidelines of WHO. A mobile app has been developed based on this tool for the benefit of the point of care physicians—paediatricians, psychiatrists and psychologists—to help them diagnose a child with ASD and is freely available on Google play store and on iOS platform “There is no medical treatment available to cure ASD. It lasts a lifetime. The issues and challenges may vary throughout the different stages of life, and the focus of interventions is to maximise the potential of a person with ASD through a combination of Applied Behaviour Analysis, structured teaching and sensory integration. The interventions have to be individualised. Medication is prescribed only in cases when the child is aggressive, hyperactive, inattentive, have sleep problems or is suffering from epilepsy,” says Prof Gulati.
After a diagnosis, early intervention has to be instituted. “The parents should be actively involved in the therapy process and the therapist should provide a home programme where the daily living activities are initiated to build independence in the child. The school they enrol their child should have an inclusive mindset. The school should sensitise other children and the staff about the challenges and how the support system can be incorporated. In cases of major behaviour challenges such as screaming, biting, or harming self-due to sensory issues, a shadow teacher can help the child and monitor the behaviour concerns,” suggests Rewari.
Although there is no cure for autism yet, negative behaviour can be controlled if worked on, and unbridled energy gets channelised creatively and effectively. “Poor communication, lack of expressiveness and awkward social behaviour are the major signs of autism. Despite the high intelligence quotient, kids on the spectrum are unable to express their thoughts and emotions and hence resort to hitting, rocking, and other ‘not so acceptable behaviours’ to express themselves. Therapy Through Theatre, an amalgamation of occupational therapy, speech therapy and behaviour management, has proven extremely beneficial for individuals on the autism spectrum,” says Prerna Gupta, who runs The Coloured Zebra, a Delhi-based organisation for children with special needs. She has been using theatre as a medium to work on these issues and parents have seen tremendous changes in their behaviour.
Prof Gulati explains how www.pedneuroaiims.org has a parents’ corner where one can access patient information material in Hindi and English on various neurodevelopmental disorders including autism. “There is a post a query domain in which parents and professionals can post their queries. Also, there is a National Child Neurology helpline – 1800 11 7776 – available 24×7 for childhood neurodevelopmental disorders,” she quips.
So this April, #LightItUpBlue because one needs to be sensitive to those with autism and sensitise others as well.
