Key Points
- Em Tanag's son Altair has autism and is losing his vision.
- Currently, 45 per cent of participants funded by the NDIS are on the autism spectrum.
- Neurodiversity is the concept that all humans vary in terms of their neurocognitive abilities.
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Determinasyon at pagmamahal ng ina sa anak na may autism upang mabuhay ng masaya
SBS Filipino
05/04/202411:48
“My son is different, but he’s not less. Some people think just because someone has a disability, it means there is something ‘wrong’ with them. That’s just not the case,” Melburnian mum Em Tanag told SBS Filipino.
Tanag’s 12-year-old son Altair has autism and is losing his sight. While his condition presented some challenges, she said she was determined to make sure that he lived a full and happy life.
Em Tanag and her son, Altair Credit: Em Tanag
Autism diagnosis
"We first noticed that our son was different when he was two years old. He wasn’t communicating like other kids. He wouldn’t say ‘mommy’ or ‘daddy’. He would just cry when he was hungry," Tanag said.
"I did my own research and noticed that he manifested some signs of autism."
Tanag said she pushed for early intervention for her son, seeking help from a speech therapist, developmental paediatrician and psychologist.
I found through my research that early intervention is important for kids with autism, so I sought help right away, especially knowing that the process of getting a diagnosis was long and tedious.Em Tanag
Fortunately, the wait for Altair’s diagnosis didn’t take three years. He was diagnosed with autism at the age of three.
"Before we even got a diagnosis, we had already prepared ourselves for it. I changed my insurance plan right away. I got the most expensive plan with the most cover," Tanag said.
"I searched for all the services I could get my hands on because I knew that waiting times were long.
"At that time, we didn’t have NDIS funding yet. All we had was Amaze, which was only $10,000 a year. That $10,000 wouldn’t even cover the therapies and things he needed for a month."
Individuals with autism will typically require weekly therapies such as speech and occupational therapy. Some also opt for other therapies such as Applied Behaviour Analysis (ABA) therapy, play therapy and music therapy.
On average, therapy can cost up to $200 or more a session.
Tanag said that Altair’s therapies helped him a lot, especially when it came to communication.
From a child who couldn’t speak, and then to him saying ‘Mommy, I love you!’ when he was seven years old ... it was the best feeling!Em Tanag
"He used to have big meltdowns because he couldn’t express himself. He couldn’t tell us what he wanted, and we couldn’t understand him. He used to throw his toys and hit his head on the wall; but now I don’t remember when the last meltdown was."
Neurotypical vs neurodiverse
Tanag shared that the challenges that came with autism didn't equate to "wrongness", but to difference.
Someone who is "neurotypical" will think and process information within what is typical of developmental milestones and their culture.
On the other hand, someone who is "neurodivergent" or "neurodiverse" will process information differently, such as when someone is on the autism spectrum or has attention deficit hyperactivity disorder (ADHD).
To be neurodiverse just means that the brain is wired differently. This difference means a different way of looking at things and doing things.Em Tanag
"For example, for us the sound of a washing machine is normal. It’s not bothersome. For them, they may have a reaction to it because of sensory overload. To them, it’s too loud or the sound may cause pain.
“People on the spectrum are also more visual. They’ll understand things a lot better when something is shown to them through photos rather than told to them through words."
Tanag said there was also a rigidity to having autism, and a difficulty in adjusting to change.
"Life is about change, though; that’s what makes it difficult for them to adjust. But, adjusting can be learned. We don’t rush the process, but they can adjust," she said.
She said that autism was still misunderstood by many people.
I know of Filipinos who have an immature understanding of autism. They think it means ‘wrongness’ or ‘retardation’. It does not.Em Tanag
"Just because someone doesn’t show emotions or communicate like others, doesn’t mean they don’t understand or feel. Even with being nonverbal … it doesn’t mean you have nothing to say," she said.
She also shared that parents sometimes experienced fear or shame with allowing their children with autism to become involved in the community.
"Children on the spectrum are different, of course; but you should take them out into the community. That’s how they learn to integrate and socialise," Tanag said.
"Throughout the years, I’ve learned to choose my battles. There will be people who will say things that aren’t nice; but now I choose to surround myself and my family with supportive, positive people."
Blindness diagnosis was difficult to process
Although Tanag said she tried to be positive, she admitted that another diagnosis led to a state of depression that was harder to push through.
"My son is going blind," she said.
"The issue is that the nerves in his eyes aren’t able to communicate with his brain. There’s no cure because the optic nerves are the problem."
When we found out, it was hard. It was heavy. I saw him crawling on the bathroom floor, trying to find his way around.Em Tanag
She said that what was most difficult was seeing her son no longer able to enjoy the things he used to.
"He used to love playing on his iPad, now he can no longer do that," she said.
"His losing his eyesight is much harder to accept than his autism diagnosis. I felt like we were starting all over again."
I fell into a depression; but I couldn’t linger on that. My son needed me. What good would it do me, him or our family if I succumbed to that? I had to fight it.Em Tanag
Like with his autism diagnosis, Tanag advocated hard for her son with his vision loss.
She immediately taught him Braille and how to adapt without his vision.
"A solution was what we needed. That was my focus," she said.
‘He has made me a better person’
Tanag shared that the challenges their family continued to face would be difficult for some marriages to overcome.
"I know that situations like ours can make or break a marriage and a family; but we've been lucky," she said.
"When we got Altair's autism diagnosis, my husband quit his job to take care of him full-time and to take him to therapy.
My husband is the strongest partner I could have ever asked for.Em Tanag
And as for Altair, Tanag shared that he had been a gift and had made their family complete.
"We're stronger as a family." Credit: Em Tanag
"He's made me so much better and stronger as a mum, and as a person."
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Determinasyon at pagmamahal ng ina sa anak na may autism upang mabuhay ng masaya
SBS Filipino
05/04/202411:48
