This post is to share what we did as parents when we learned that our son had Autism Spectrum Disorder (ASD).
Disclaimer: This post is meant to be used for informational or educational purposes only and not as a substitute for professional medical advice. Please consult with a healthcare professional if you need advice for you or your family’s medical condition/s.
Having a child diagnosed with ASD (Autism Spectrum Disorder) is definitely going to be a life-changing event not only for your child but also for you as the parent. It asks so much of everyone involved. However, unlike generations before when undiagnosed kids had little to no support and were gaslighted to be “hardheaded” or “weird”, now it doesn’t have to be the same. I am glad that more and more parents are having their children diagnosed early as it is the first step of interventions.
What is Autism Spectrum Disorder (ASD)?
Autism Spectrum Disorder is a developmental disorder that causes issues with social skills and usually includes speech and non-verbal challenges. The disorder is almost always unique with each child hence the term “spectrum”. This is intrinsically linked to learning and development as this is tied to how a child grows up with people around him.
The earlier you screen your child the better equipped you will be as a parent to manage your child’s intervention and also get professional help if needed. Early intervention is definitely the key to helping your child get as close as possible to independence later in life.
How I assessed my child possibly having ASD
There are certain milestones that a child goes through while growing up. But for a child with ASD, some of those get skipped, and some other behaviors take their place. Some examples for my son were:
- Not using toys the way they should be played, i.e., often lining up toys and/or focusing on some specific part of a toy, like only spinning the wheels of a car
- Not maintaining eye contact with me, and not responding when I’m calling his name
- Little to no gestures, not even pointing to objects
- Not returning smiles when given
- Has repetitive behaviors and falls into unusual routines — like when going home it should be going through a certain route, otherwise, he melts down
- Flapping arms when excited or when suddenly cold, for example, when dipping into a pool
Due to little or no improvement, we eventually decided to have an assessment with a neuro-dev pedia when our son was 3 years old.
How to find a neuro-developmental pediatrician
I talked with an OB-GYNE family friend and asked for referrals to neuro-dev pedias that he knew. He referred me to one of their specialists in the hospital where he was working. I was able to reach out to the pedia and set an appointment with her. We then took our child for a check-up and screening.
The screening took around an hour and cost us around Php 5500 pesos (here in the Philippines). You may find some other specialists that charge less.
Once positively diagnosed, you will likely need to look for an occupational therapist and/or speech therapist as your child needs to go to therapy weekly. You will also need to come back every 6 months to see if there are adjustments needed in terms of his therapy and practices at home.
Also, don’t forget to get the doctor’s certification to be able to apply for a Persons with Disabilities (PWD) ID. You will likely be charged for this service.
What to expect after diagnosis
It was definitely hard the first time I heard about the diagnosis. I personally went through all of the stages of grief within a span of a couple of months — denial, anger, bargaining, depression, and acceptance. I blamed myself for bringing this to my son and for not seeing the signs earlier, but eventually, as I read more about it I realized that our situation could have been way worse than other families with ASD children. I’ve watched some YouTube videos that show a family with all of the kids on the spectrum, and I’ve also encountered another who had other disorders aside from ASD. I’ve since realized that I should be counting my blessings rather than cursing the darkness.
But most importantly, I wanted to see and experience the best version of my son. It now becomes imperative that I do whatever I can so that he will not be dependent on me forever. The most important thing now is having acceptance and giving unconditional love to all our children — providing them roots and wings. With a family’s support, a lot can be achieved.
How to find a therapy center or occupational therapists
I asked the neuro-dev pedia for some recommendations as she also works with therapists. We opted to look for a center near the hospital.
The process of looking for the right center was actually pretty hard for us, due to the fact that a lot of kids born during the 2020 pandemic seemed to be affected by this. I found therapy centers near us were fully booked, and some had 6 months or more waiting lists.
I personally theorize that kids born during the pandemic had a higher propensity to have ASD as everyone was locked inside their homes for a long time, and as a result, they weren’t able to play and have social interactions with other kids.
We were able to find a center eventually even if it was a bit on the expensive side. Fortunately, we were also able to book an appointment with a therapist not long after. An initial assessment was done to be able to gauge the skill level of my son so that the therapist would be able to prescribe the activities he needs. Most of the sessions are 1:1 but sometimes there can be dyads (2:2) or even triad sessions (3:3) depending on shared schedules.
This does not bear saying that reputable centers should have at the very least PRC licensed therapists. Please do some due diligence first and also read some reviews before deciding on one.
There should be one assessment per different therapy type (usually one for occupational, and one for speech) and the therapist-teachers can share assessments with other similar teachers as well, just in case one takes a leave and another covers for him/her.
After each therapy session, there will be feedback from the therapist, so it is also important that at least one parent is present. There are also notebooks passed around as logbooks of activities.
Changes in Quality of Life at Home
There was a lot of adjusting involved. Early on, there was a lot of frustration because my child couldn’t communicate very well. He wanted to speak all of his words, but we couldn’t understand him. He was also affected by a lot of stimuli that sometimes became too much for him and he got overwhelmed. Meltdowns were common, and routines were created. Managing routines can be tough as small changes can trigger whining and sometimes meltdowns.
We are fortunate that in terms of diet and some everyday chores like taking a bath or wearing clothes, my son is relatively normal and doesn’t need any special arrangements. Some families may have issues with feeding and may have extra medical issues compounding problems.
Playing is also important, and as much as possible we try to expose our kids to playgrounds so that they would have exposure to other kids, especially since they’re not going to school yet. Some places like Kidzoona are really affordable even for an hour.
At home, we try to buy some toys that engage the senses, like stacks, puzzles, pegboards, and pretend play toys. We also try to limit cellphone time as much as possible. YouTube is strictly controlled, and most of the time we use the TV to stream it instead of having them watch using cellphones without supervision.
Social interaction is important and as much as possible we try to find playdates with the kids, to help them with developing both verbal and nonverbal communication skills, and to give them a different experience with playing.
How to Cope as Parents
Coping with my son currently growing up is a huge learning moment for me, as I need to be extra patient and observant. Triggers may come from anywhere, and most of the time preparation can soften and lessen any issues we may encounter especially when venturing outside.
Again, it boils down to unconditional acceptance and trying to find a middle ground amidst all of the chaos that happens. It’s not that different from having normal children, but in this case, this needs a bit more patience. What I personally did is I created a journal for recording things that I do with my son. It’s a helpful exercise to see how things are improving and some insights can be captured when you write about your experience.
Another helpful thing I did was I read about Stoicism and used its principles of focusing change on myself, instead of changing the world. Emotions can oftentimes take the best out of you, but you need to accept them to be able to see things more objectively.
A principle I strive to practice is to be present. It seems to be easier to focus on our phones when we are at home with our kids, but there is value in giving some focused time to our kids and really listening to what they are trying to say. We should allow ourselves to be bored sometimes and not fill every waking hour with stimuli from our phones.
Our children are growing quickly, we should remember that the seemingly small things are not really small for them and we should enjoy their affection while they are young. Because it will come to a point when they will grow older and all that innocent affection will also go away.
How to handle meltdowns
The most important lesson I learned during my son’s meltdowns is to go down to his level. When he goes to the floor, I go down with him. I comfort him, soothe him, and let him know that it’s okay to release his emotions. I don’t get embarrassed anymore when I do something like this in public as the needs of my son far outweigh the embarrassment I may feel.
Whenever my son has his meltdowns, I do simple compression massages — basically massaging arms and elbows toward the joints and legs towards the knees — to help him regulate his sense of being overwhelmed. Usually, he calms down after a few minutes. Some parents also bring a sensory brush, as they use this to give children relief via brushing stimulation on their limbs.
When you see someone having trouble with their child due to meltdowns or similar circumstances, please don’t judge their child as being “makulit” or “matigas ang ulo”. I have encountered closed-minded people who comment out loud or try to lecture me on how to parent my child, without knowing our full situation.
Other Questions
Do I need to eventually combine formal schooling and therapy?
Yes, there would probably be overlaps especially when there is a need to focus on developing certain skills.
How do I apply for a PWD ID?
You will need to go to your barangay officials to request one. Typically the requirements are a medical certificate, one valid ID (usually a birth certificate), proof of residence, 2 1×1 ID pictures, and an accomplished form from them. They will be the ones who will file for you in your respective city hall.
Once you have your ID, you will be able to enjoy food and medicines, and also check-ups with a 20% discount. Also, indoor playhouses will also accept these. Groceries for the card bearer can also include a discount on groceries, but you will need to take the PWD booklet with you when you buy. Another benefit is availing of PWD parking slots.
What are some resources that I can read or communities that I can join?
For books, our OT recommended Bill Nason’s The Autism Discussion Page: On Anxiety, Behavior, School and Parenting Strategies and it’s basically a collection of articles the author collated from advising the Autism Parenting community all through the years. It’s a good knowledgeable read especially when starting out on your journey.
For communities, you can look for local FB Groups but I find that there is more noise in posts especially when the moderation is poor. It would be better to start or join a local community (or even group chat in Viber or Messenger) with your therapy clinic as you will be exposed to like-minded parents and therapist-teachers.
Summary
I’ve discussed what Autism Spectrum Disorder (ASD) is and how it should not be the end of you and your child’s world once he is diagnosed. Early intervention is almost always the best course of action. I’ve also recommended some tips and knowledge to help other parents in their journey.