Anila Gonsalves grew up feeling helpless about her siblings’ health. It was only when they were past 20 that they were diagnosed. Her sister has Tourette syndrome, a nervous system issue that result in tics, and her brother has schizophrenia, a brain disorder that can muddle a person’s sense of reality.
The experience endowed her with the spirit of proactiveness and solution-finding. It also instilled in her the importance of early intervention. Which is why, when she found out her first born was displaying signs of autism, she was quick to react in spite of being eight months pregnant.
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“When I was expecting my second son, I put my first one into the nursery and that’s where they realised that something is a little off, because he wasn’t responding, he could not speak, had no eye contact - all the red flags of autism. They were very unsure – but they flagged it to us. So the thing is, I immediately took him to specialists and at that time, they said, ‘We are not sure but he’s showing signs’,” she tells Gulf News in an interview.
“When I got to know about my son’s condition, I broke down,” she says.
However, hard-won grit pushed her towards doing the best she could for her child. “I decided to quit my job, get him the therapy that he needed. I would go back and forth between India and Dubai, because of cost constraints. For two to three years I did that.”
During school terms, Michael, now seven, would get therapy in the UAE and over the holidays, he’d have more therapy in India.
Slowly, Gonsalves began to understand what worked for her child. “We then figured out the things we could do to help him out. Like, he has acute sensory problems, he couldn’t talk … so we worked with therapy on every aspect and that’s how I got him to a level where he started to [be able to say] a few words. That’s also when I realised that in therapy they have a system called PECs (picture exchange communication system), where when you carry physical cards around. And they would show him these cards, because he couldn’t remember the word [for something] and she [the therapist] would show him and he would point to certain things.
“Also things like using sign language – thumbs up and thumbs down – weren’t happening, so that started to put an idea in my head. These basic things were helping me a lot. I put all these things down and I felt like I could use the things I learned to create an easy-to-use app,” she says.
And so she created Fabulaa, a free alternative and augmented communications app. “Augmented is basically when you add something to your language or your speech; like using sign language or a letter board to help you. When someone is just learning speech or speech comes and goes, that’s when you use the augmented part. You use the alternative language for someone who has no speech at all,” she explains.
For Gonsalves, the app in addition to the therapy helped her communicate with her son. The helplessness seemed to ebb. “When he couldn’t communicate, there were a lot of things I had to face; him having breakdowns, us not understanding him. Now that he can communicate, it just makes it easier for me. So I know if he’s happy, he’s sad, he’s in pain. Even if it’s a simple yes or no, it makes a big difference. Not knowing that … you have to guess all the time,” she says.
She says the app is easy enough that it allows her younger son to help his brother. “They are very, very close and attached to each other. So obviously the younger sibling doesn’t know exactly what is happening, but he knows he needs a little more help and we need to be a little more patient with him,” she explains.
When the demands are greater on one sibling because the needs are greater in another, it can lead to the ‘parentification’ of that child. And Gonsalves admits that when she was growing up, she felt a bit like that too. “I feel that happens with my younger son also. But now when I look back at it, it just made me stronger, more independent. It made me understand what happens and what people go through. It builds emotional intelligence,” she says.
Today, she says, autism no longer is a term talked about in whispers, but there’s a greater need for inclusivity. “Everyone is aware about autism, but how do you include them [autistic kids] in daily life - that is what is needed,” she says.
Anila Gonsalves pens an open letter calling for understanding, acceptance and inclusion:
As a mother of an autistic son, I appreciate that there is a day or month when the world throws a spotlight on autism and gives some thought to children and adults who are on the autistic spectrum. But is awareness enough?
What is Autism Awareness Month?
World Autism Awareness Month, on April 2, began as an initiative of the United Nations in 2008 and April is now a whole month for Autism Awareness. Although there is still more to be done, awareness of autistic spectrum disorder (ASD) has increased and wrong or even harmful beliefs about autism are being dispelled.
In recent years, I have noticed the conversation among autism advocates, including adults on the spectrum, gradually shifting towards autism acceptance. This is something I see a need for, as children and adults on the autistic spectrum still face barriers in many areas, including education and employment.
Why awareness is not enough
I want my son, Michael, to grow up in a society where he is accepted for who he is. I dream of a world where each person is appreciated for their unique gifts and talents and where barriers that prevent people reaching their full potential are brought down. But what will it take for this to be achieved?
Appreciating and celebrating differences
The world would be boring if we were all the same. Many of the challenges that autistic people face come when others expect them to fit into their way of doing things. There is no one ‘right way’ of thinking, learning or behaving. Let’s appreciate diversity in all its forms, including neurodiversity. We need more understanding and acceptance, and this comes as we put aside our preconceptions and get to know each other.
Autism is not a problem to be solved or a disease to be cured. It is a beautiful part of Michael’s unique identity that makes him who he is. For example, Michael has difficulty expressing himself verbally and this can make it difficult for him to be part of regular school interactions. Some people may think that he is not sociable or doesn’t want to be part of a group. However, when he gets invited to a classmate’s party he expresses his excitement in other ways like hugging, or taking pictures.
Creating a more inclusive society
Children growing up on the autistic spectrum often need some extra help with learning and communication. But rather than therapy aimed at conformance to neurotypical society, we need support tailored to individual strengths and challenges. Changing the environment to make it more accessible, such as avoiding loud background noises, can sometimes help. Using different forms of communication like sign language and augmentative and alternative communication (AAC) devices
can enable all voices to be heard. We were once invited for a special dress rehearsal theatre play where they gave a chance for children of determination to watch and enjoy. It was Michael’s first time watching a play.
After the play, he could remember every part that made him laugh and would enact it back at home along with his younger brother.
The theme for World Autism Month this year is ‘Inclusive Quality Education for All’. Children with autism often face challenges in accessing education, and the local availability and cost of any extra support required can vary greatly. I believe that all children deserve a quality education no matter where they live. This World Autism Month let's celebrate diversity and work together for a more inclusive society.
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