For a parent to believe that their bundle of joy has a problem can get quite overwhelming. But with autism, catching it early - ideally by the age of 18 months - can make a huge difference because early treatment can reduce the disorder's effects and help your child learn, grow, and improve.
As the month of autism awareness - April - draws to a close, parents who have children with autism share insights on how they first learned about the autism spectrum disorder (ASD) and accepted it. Although frightened and nervous initially, they managed to navigate through it on a day-to-day basis with the help of friends, family and support groups.Dubai resident Keerthana Shenoy, mother of 18-year-old Sujith Shenoy, said when the doctors told them that their only child had medium-level autism, her family was unable to understand the enormity of the issue and thought it was just some condition that would get cured after some time.
"Sujith was only one year and 10 months when he was diagnosed with autism and we were clueless as well as in denial mode because we had never heard of such a disorder. Moreover, we couldn't believe our son had it. We did all the required therapies and were hoping that this is just a phase and that he would get miraculously cured, which was a mistake. The earlier you accept it, the better you can deal with it."
Although Sujith is non-verbal, he was a very active child which was why his parents encouraged him to pursue sports. Sujith has recently won a bronze medal at the Special Olympics this year for roller skating and his parents are now looking to train him professionally for more such competitions.
"Sujith is very independent at home in terms of self-care activities. But to leave him with other people is difficult as he cannot communicate verbally, one of us is always with him."
Keerthana said joining support groups such as SFS, SNF and Prerna has helped her deal with many issues and understand autism better.
"Families in these support groups are like our own families. We get to talk to other parents and share our happiness and problems without the fear of being judged because all those in these groups have similar issues so they understand our pain and struggle. When we attend such get-togethers, we are not worried about our child's behaviour issues because no one questions us."Roshan Shetty, who also has an 18-year-old daughter, Aisiri Roshan Shetty, with autism, said: "Parents have to first and foremost accept that their child has this issue and that it is a life-long thing. When she was only one-and-a-half years old, I noticed a delayed response in her reactions.
When we were told she had autism, we thought it was a mild disorder and would get cured as she grows. But when I read that autism was a life-long disorder, my concern increased. We got her all the required therapies and we even put her in a normal school, only to be told a year later to "shift your child to a special school as she is not normal". That was the saddest day for us as it was her sixth birthday but we didn't give up hope."
However, the Shettys home-schooled Aisiri, who was also found to be diabetic. It helped her to become self-reliant and then focus on understanding what she could do well rather than what she couldn't.
"I found her taking a keen interest in music, and although she cannot express herself, we found that she could easily memorise songs and sing them - be it in any language! We found that music calmed her and that became her biggest strength. She now trains herself at home and has been giving stage performances across the UAE where she sings different songs in different languages. She has also been called for live shows on TV and radio channels as well. The beautiful thing about the UAE is the spirit of inclusion and the opportunity it gives the determined ones to come out of their shell."
Advising parents, Roshan said: "Firstly, do not panic even if some one else points at a difficulty he notices in your child. Instead of getting defensive, the parents should take notice, get the child assessed and start the therapies because the earlier you accept and start work on the special need of your child, the better you will handle and help him. Also being part of support groups helps in handling the situation better as you hear and get tips from other parents about the same issue. You don't feel lonely."
Community pages help
A number of Facebook pages have also come up focusing on the communities that help families navigate autism on a day-to-day basis. These Facebook groups help people with a variety of things - from breaking down autism into a more understandable concept, connecting people online to different training and development sessions, therapists and professionals, as well as being safe spaces to share one's own experiences, while also learning from others. The communities on Facebook essentially act as a larger support system for parents and families of those with autism, as they also need help and support on this journey - and more importantly, know that they're not alone.
With almost 3,000 members, Autism Mom Dubai group was founded by April McCabe, who moved from the US to Dubai in 2008 and also founded Autism Support Dubai, Peer Power and Autism Airspace. She has a 16-year-old autistic son Owen and she created the group to share her thoughts and experiences about life with autism. "I started the page because of the stigma. When I started the page, many people shared their stories of how they were afraid to talk about autism or take their kids out in public because of the way others judged them."
April then started arranging play dates with mothers of children with autism so that mothers could come out, be with each other and support each other if their child started having a meltdown.
"We started having playdates and coffee mornings, and I noticed that this has made the mothers stronger, more confident and they share the good, the bad and the never-talked about things - along with knowledge from over the years. Also, this has helped them get tools and tips from other parents on how to react to society when they are shunned by people. That's how I feel my pages are empowering parents to stop being isolated," McCabe told Khaleej Times.
With a goal to spread awareness, April believes that the more people talk about autism and how it affects daily life, the more people will understand her son and others who have autism for the wonderful people they are.
Source: Khaleez Times