Those children must be bravest of all who go out in the world and stay true to themselves even when almost no one likes them, or try to fit them in a tiny box of specific labels! Forget about others, will you feel elated or jump with joy if someone comes to you and say– “Wow, you are really normal?”
While April 2 is celebrated as World Autism Awareness Day, but how much do we know, and don’t know, about autism?
When the world is steering away in a direction where too much imagination is interpreted as a disability, in an exclusive interview with Life Beyond Numbers, Namita Somani, managing trustee at Amrit Somani Memorial Centre (ASMC) takes us through the beautiful world of the autistic children which we often fail to see and experience.
ASMC is the brainchild of Namita Somani and her husband, Suresh Somani. The organization started 11 years back and is now home to 42 autistic kids in the City of Joy.
“We are an intervention center for kids and adults in the spectrum or those who have any kind of developmental or behavioral disorders. We use the principals of Applied Behaviour Analysis (ABA) and each child has an individual education plan which is formed after consultation with the parents, keeping in mind the child’s moods, needs, abilities,” says Namita.
So, what is Autism?
A neuro-developmental condition that has been shrouded in misunderstanding for decades– Autism, or Autism Spectrum Disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication.
According to a study conducted by the International Clinical Epidemiology Network, about one in 100 children in India under the age of 10 are autistic, and nearly one in eight has at least one neurodevelopmental condition.
While the indicators of autism start to appear by the age of 2-3, the risky part is there are many subtypes in autistic children, therefore each child or person has a distinct set of strength and challenges, which a parent or a therapist needs to identify in order to ensure positive outcomes. Even though indicators of autism usually appear by age 2 or 3 but it is said that some associated development delays can appear even earlier, and often, it can be diagnosed as early as 18 months.
One common misconception is vaccines cause autism. Well, they do not and there is no credible evidence attached to it.
Even though there is no cure for autism, early intervention can make a huge difference in the lives of these children and help them live a more independent life by teaching them essential skills through behavior therapy, Applied Behavior Analysis (ABA), speech and language therapy, social skills therapy and occupational therapy.
Living with Autism
When it comes to autism, there are no specific check-box descriptions but there are definitely tell-tale signs of this condition- Not making eye contact with people or even with parents, not smiling, not communicating, not responding to their name, not acknowledging toys or other items shown to them to name a few.
But, “Why fit in when you are born to stand out?”
“Trust me, being a mother of the child in this spectrum, ABA method really works. My initial thoughts were how will I ever get my child toilet-trained, how will I ever get him to go to a saloon for a shave, how will I cut his nails, how will I take him on a flight but following the principals of Applied Behaviour Analysis, all of that has been possible,” says Namita about Amrit, with a smile.
She continues, “Today my child is going to gym, he is a delight on a flight. It took us 2 years to desensitize him to an earphone but today for 2.5 hours flight, he sits without any trouble. He goes to the saloon for a pedicure, shaving, shampoo or a head massage. So, ABA has really worked for my kid. It is a slow process but as we say, each and every milestone for us is a celebration.”
A little bit of promise and a lot of acceptance
32-year-old Smita Sharma, a Board Certified Behavior Analyst (BCBA) who works with ASMC, tells LBN “Every child is unique and therefore for us more than disabilities, we believe those are deficits on which we need to work on. We have a one-on-one approach for every child associated with us. While someone has behavioral issues, others have communication and social issues. So, our sessions are customized for every child who comes here. ”
There are two types of training- In-centre Parent Training and Intensive Home Program provided by the organization to help children and their parents build a relationship and communicate with each other in a more efficient manner.
While in the former, a parent comes to the center and get trained how to deal with their autistic kids in the latter one members from the organization visit the kid’s house and intensively train the parent and gift them individual education plan.
Apart from that, they have another effective program called School Shadow, where a member from the organization accompanies the autistic kid to a mainstream school, stay with them and help them cope up with the instructions given by teachers.
“Some children are okay with day to day instructions but they are not able to cope up with academics. So, we help them to learn at their own pace,” adds Smita.
When the imagination takes charge of these children and something very exciting happens in their inner world, they need an emotional outlet of that energy. They may laugh, scream or just run. So, if you are ready to listen, these wonder-kids are ready to share their thrilling inner world with you.
Currently, Suresh Somani, Joint Managing Director, IAC, a non-profit organization is likely to come up with an autistic township in the next 5 years, which will be spread over a 52-acre plot at Sirakol in South 24 Parganas. It is a joint effort between the CSR initiative of a private firm, Ratnabali group, and state government of West Bengal and is estimated to be an Rs.500 crore project.
Daniel Webster once said, “If all my possessions were taken from me with one exception, I would choose to keep the power of communication, for by it I would soon regain all the rest.”
Next time, you meet an autistic child or any child for that matter, don’t tell them to be normal, they are brilliant in their own ways and they don’t need to pour their creative minds into a mold just to fit in a hypercritical world.
A child with Autism is not ignoring you, they are waiting for you to enter their world. Gift them the power of communication and help them shine, like a STAR!