Aditya (name changed) is a 9-year-old autistic child. From the beginning, his parents noticed there were signs of him being somewhat different.
Asked what they meant by different, they explained Aditya did not show the attachment they had anticipated based on what they had heard from family and friends.
Aditya, born pre-term at 36 weeks, was their first child and they did not have experience otherwise. They first realised their son's condition when he was 6.
Aditya goes to an integrated school and is performing adequately. His behavioural problems are relatively under control and he is able to take care of his distress and sense of anger. His sensory problems have improved too.
Disorders of the brain or mind are less understood in the Indian society and often paid inappropriate attention. Many times, such concerns are brushed under the carpet.
Latika Wadhwa, founder, MaStyle Care, an NGO, says, "At a recent event conducted on autism, we came across parents who were not comfortable with their child's condition. Bound by societal pressures and customs, some of them even requested us not to upload the photos of their children on social media, as they had not told their family about the child's problem.
"The parents were afraid that if people got to know, it would harm their status in society."
Autism and Autism Spectrum Disorder (ASD) are both general terms for a group of complex disorders of brain development. These disorders are often characterised by difficulties in social interaction, verbal as well as non-verbal communication and repetitive behaviors usually in varying degrees.
Just because your kid has low motor skills, it doesn't mean that you cannot work around the problem. If you have an autistic child, help develop his/her concentration skills to counter attention deficit. (Photo: Shutterstock)
Dr Deepak Gupta, child and adolescent psychiatrist & founder of Centre for Child and Adolescent Wellbeing (CCAW), says, "Every child with ASD is unique in his or her own way, an attitude that our society has to understand, acknowledge and appreciate. In India, it is difficult to even find medical and other tests for diagnosis, let alone having accessible information on the problem.
"In lack of basic information, where even recognition ASD gets challenging, there arises a prime need for raising awareness of ASD."
He adds, "I have been in this profession for more than 17 years and have seen that ASD cases have witnessed a sharp rise in recent times. I believe there must be enough awareness campaigns educating people about ASD, its early recognition and ways to deal with it because it is often treated with extreme social disapproval."
The right approach
Kamna Chhibber, head, Mental Health and Behavioral Sciences, Fortis Healthcare, Delhi, says, "Working with a child with autism is a challenging task and patience probably plays the biggest role in it.
"Trying to bring about a singular change takes a lot of time and consistent effort and for any parent working with their child, it is going to be their ability to stay calm, collected and patient which can ensure that the desired change is brought about."
In a case of autism no one expert is solely valuable. It is always a team of experts ranging from psychiatrists, psychologists, occupational therapists, applied behaviour analysis experts to art therapists and sometimes special educators which helps bring about the desired changes.
Kakali Kar, a special educator, speech therapist and autism expert based out of Kolkata, says, "There have been times when parents have approached me with their child's condition as a one-time illness instead of treating it as a disability. First things first, parents need to snap out of it and face the reality. Only when you recognise the problem will you find a solution."
She adds, "People with autism have low cognizance skills. It is imperative that parents are patient. Let your kid be self-dependent; let him/her do things on their own, but under supervision. It will take longer than usual, but it's one way to get around the disability.
"Start with small things like, serving less amount of food, instead of serving everything at once. Let them use their senses, let them feel the hunger, let them speak up."
The mistake some Indian parents commit is that they do not give the child a chance to become self-reliant.
Just because your baby has low motor skills, it doesn't mean that you cannot work around the problem. If you have an autistic child, help develop his/her concentration skills to counter attention deficit.
You can avail of special courses/sessions, but a lot can also be done at home.
Teach them to do their everyday activities such as taking bath, putting on clothes, wearing shoes on their own. Be around, but be persistent that they do it on their own. These small steps can go a long way in developing your child's abilities.
Tips to remember
* Have the right support systems, talk to the right experts, make sure a multi-disciplinary approach is followed wherever your child is being treated.
* Read because it is integral to have realistic expectations of what can and cannot be achieved.
* Never hesitate to ask questions and learn.