Our Family’s ASD Journey: Raising a Child on the Spectrum
This is the first time I am going to share my youngest son’s condition in public. Not that it bothered me, nor was I ever uncomfortable bringing up the topic; I just wanted to wait until I had a deeper understanding of his condition. In November 2022, Keos was diagnosed with Autism Spectrum Disorder (ASD).
According to the American Psychiatric Association, ASD is a developmental condition that involves complex and persistent challenges with social communication, restricted interest, and repetitive behavior. While ASD is a lifelong condition, proper intervention can improve one’s symptoms and ability to function over time.
Understanding the Signs: ASD Diagnosis Process and the Road to Early Intervention
We noticed the signs at the onset of the pandemic in early 2020. Keos was two and a half then. He was capable of reciting numbers (1 to 100), the alphabet, and pretty much everything you could expect from a toddler—until he wasn’t. This is called regression, or the loss of skills that a child with autism has previously acquired. It was the first sign we encountered, but it was difficult to actually tell if he had a condition because everything else seemed normal. He has strong eye contact even to this day, wasn’t sensitive to his environment, and loved interacting with his brothers. I realized that signs of autism in toddlers really differ. Some of the signs didn’t show up until he turned five.
Despite this, we knew we had to consult a medical professional. However, his early intervention for autism was postponed several times due to the closure of all developmental centers around Manila.
In 2022, as the world started to heal, a couple more signs began to show up. Keos had poor frustration tolerance and became selective with his activities. He has shown repetitive behaviors when playing, preferred self-directed activities and didn’t want to be given instructions most of the time.
After the daunting process of seeking the right intervention for Keos, our efforts led us to the Build for Fun Learning and Development Center in BF Resort, Las Piñas. We successfully booked an evaluation with Dr. Luisa Ysabel Diaz, a Developmental Pediatrician (DevPed), where Keos was finally brought in for assessment concerning his speech and behavior.
He was officially diagnosed with Autism Spectrum Disorder, and we were given a full comprehensive report on his overall development. At the age of five, his motor and cognitive skills were on par with those of a 2.5-year-old, while his adaptive, personal-social, and communication skills were significantly lower.
The family’s role in Keos’ ASD diagnosis
It was sad news, of course. Every parent wants the best for their children. But in a way, the two-year strict lockdown had prepared us for this moment. We sensed that something was unusual, and we knew in our hearts that our son was autistic; we just needed confirmation from an expert. Perhaps it helped that we hadn’t spent those couple of years in denial nor tried to brush off the signs. We encountered some misinformed yet well-meaning people who dismissed his delays as typical developmental hiccups that many kids go through these days. While I understand they meant to offer reassurance, only Josh and I truly understood what we were dealing with.
His brothers, AK and Knight, were understandably worried. Knight, in particular, got emotional and asked if Keos would ever be able to live a ‘normal’ life. My husband and I gently explained that while Keos would face lifelong challenges, with the right support and interventions, he could make significant progress. I reassured them that although the journey ahead might be different from what we expected, Keos could still lead a fulfilling and meaningful life, and that we would be there to support him every step of the way.
Recommendation for Intervention
Our DevPed recommended an individualized program for Keos through Occupational Therapy (OT), which will focus on several key areas to support his development. This intervention targets the improvement of his social skills, including self-awareness, interaction, and engagement, as well as enhancing his quality of play. This program also aims to address his rigid and repetitive behaviors that prevent him from being fully functional. Next, Keos needed to demonstrate significant progress in his behaviors before he could begin Speech Therapy (ST).
After six months of OT, we were thrilled to receive the green light for ST—it was a moment of pride for us, seeing him reach a point where he could engage in new activities and continue making progress. Our little boy is thriving!
Currently, Keos is receiving regular Occupational and Speech Therapy from his amazing therapists, Teacher Guia (OT) and Teacher Fran (ST). To make things more exciting, he has recently been recommended to begin school. While he did participate in a brief summer program at his brothers’ alma mater, it was more focused on helping him practice social interactions rather than being a formal academic experience. Now, as part of the preparation, we have requested another evaluation with his DevPed and are eyeing a few promising schools that offer special education in our area.
The Beautiful Progress
Prior to his ASD diagnosis, Keos would easily get frustrated at the slightest transition in his routine. He had very limited communicative intent and was often not sustained. He seemed aware of the people around him but would not acknowledge their presence unless it was any of his immediate family.
The progress may not be a full 360 degrees, but it was significant. He used to hate being surrounded by a flock of strangers due to sensory overload and almost didn’t want to socialize with anyone outside our home. Now, he happily walks into the therapy center, hotels and restaurants, and greets everyone with a cheerful “hey guys, good morning!”. He remembers to say “thank you” when his food arrives, and offers a sincere “sorry” when he thinks he’s made a mistake. He also showers us with random “I love you, nanay/tatay” every day.
Keos has made amazing progress in recognizing and acknowledging the presence of others, and learned to call people by their names. He is now open to playing with other children, and though quite challenged, he’s slowly picking up on social cues.
Along with these social improvements, he’s been working hard to use the right words and tone to express what he wants. He learned to say when he is happy or sad. Recently, he has become especially interested in writing and drawing. Josh and I have often caught him practicing sentences over and over until he gets them just right. Last week, he was in front of the mirror, practicing the phrase “the bird is finished!” (he loves drawing birds) several times.
He still has meltdowns; even Josh and I have our fair share of them. But from being able to utter only a grunt, Keos now slowly and patiently tries to communicate with us. It may not be the typical milestone we expect from a child his age, but for us, it’s already a win. A huge one.
Love Your Ausome Kid—Quirks and All
As a mom to a child on the spectrum, I feel it is my responsibility to speak up and challenge one of the most common stereotypes among autistic individuals. I have had conversations with older parents who strongly suggest autistic children were born geniuses. That they usually have exceptionally high IQs, are savants in math, history, or the arts, prodigies in music, or have photographic memories.
It is true that some renowned figures in human history were on the spectrum. But when you are raising a child with autism, it is imperative to understand its complexities in order to set your expectations right. If you are waiting for your child to transform into a genius, capable of mentally solving intricate formulas and whatnot, would you love them less if it didn’t happen?
This reminds me of a beautiful excerpt from the book, Growing Up on the Spectrum:
“Don’t think that there’s a different, better child ‘hiding’ behind the autism. This is your child. Love the child in front of you. Encourage his strengths, celebrate his quirks, and improve his weaknesses, the way you would with any child. You may have to work harder on some of this, but that’s the goal.”
Keos is now 7 years old. His journey is a lifetime commitment and parenting a child with autism is not for the faint of heart. Raising a child on the spectrum has taught us so many things, both painful and amazing.
We knew from the get-go that Keos may never have the life that is deemed ‘normal’ by many, but we are so blessed to have a solid support system and all the resources we needed in order to give him the life he so much deserves. Josh and I have been blessed with the best jobs that allow us to be present parents. My mom and siblings are always ready to take over when things get out of hand, and my in-laws never fail to shower our kids with love and affection despite being thousands of miles away.
We are also grateful to everyone behind Build for Fun Learning and Development Center for providing interventions that Keos and many other unique children need in order to reach their fullest potentials. To Teacher Guia, who has been with us since day one, Teacher Yuki (our second OT), and Teacher Fran, for the love you all happily give and the professional care you provide — THANK YOU. You are superheroes personified.
Our little boy continues to thrive because he is surrounded by people who love him so dearly. There are challenges, you bet, but Keos is just like any other kid; he is happy, playful, and has an adorably unique sense of humor that naturally draws him close to people.
We wouldn’t have it any other way.
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