I decided to invite a friend of mine to share her experience when her daughter was diagnosed with autism with hopes that this could offer some insight about raising a child with autism.
We took our second child to our pediatrician for regular visits to check on her developmental progress and to verify whether she was meeting her milestones. Thankfully, our daughter was meeting her physical milestones and the pediatrician didn’t notice any peculiarities.
Noticing Her Speech Delay
However, as a mother, I personally felt that my daughter’s speech was delayed as she was only vocalizing 36 phrases up to 3 years old.
This may seem normal for some children. But the other concern that I have is my interaction with my daughter would usually be one way.
Other than that, my daughter would only speak to me when she needs to. It’s usually a one-way interaction.
Sometimes she would cry or point if she wanted something. If I wanted to converse with her, she would just ignore me and the other family members.
When I voiced my concern to our paediatrician, she stated that some children develop speech between 2 to 4 years old.
I had shared my concerns with my husband, who was always present during our visits to the paediatrician. Naturally, my husband heeded the advice of the paediatrician and reassured me not to worry.
Then the COVID-19 pandemic occurred, and Malaysia found itself in lockdown since March 2020.
Limited Play with Other Kids
Perhaps it was a blessing in disguise for me, as I was working from home due to the pandemic and the children were at home.
As a result, I was able to observe how my daughter plays with her cousins who are the same age as her.
The other 3-year-olds would play together, while my daughter preferred playing on her own. The others would speak with each another, but my daughter would only speak if she wanted something. And even that is rare.
As 2021 approached, I spoke to my husband and shared my concerns again on my hunch that our daughter may have speech delay.
The principle is, if we are correct, then we can address the speech delay immediately. If there isn’t anything to worry about, at least we know.
We visit our regular paediatrician for regular check-ups, mild ailments, and vaccination. A consultant paediatrician is someone we seek a second opinion and advice for critical cases. In the past, we sought advice on whether our newborn needed to be admitted or warded, etc.
Getting a Second Opinion
We made the decision to see another paediatrician in January 2021 for a second opinion and to seek their referral on whom she would see to assess if our daughter had speech delay.
We booked our appointment with our consultant paediatrician on the 8th of January 2021.
You may choose whom you would like to consult, but we consulted Datuk Dr Musa Mohd Nordin. He is attached to KPJ Damansara.
Our Consultation with Dr Musa
Our intention was to request Dr Musa to advise who we should see to assess whether our daughter has speech delay.
Upon inspection and probing by Dr Musa, he made a pre-diagnosis that our daughter was on the autism spectrum.
I will not lie that the first mention of autism caused me to cry while listening to the doctor. The tears flowed and never ceased while we waited to pay and proceeded while we drove silently back home.
I guess I felt blindsided because the thought never even occurred to me.
Overlooking the Autism-Related Signs
Dr Musa said that it is common for parents to miss the autism related signs.
When a child has autism, parents would generally associate autism with the high-end spectrum of autism i.e., severe autism.
Since Dr Musa was not a Child Developmental Specialist, he did advise that we need to confirm his pre-diagnosis with a Child Developmental Specialist.
He recommended the following Child Developmental Specialists in no particular order:
- (Associate Professor) Dr Juriza Ismail, who is attached with the Hospital Canselor Tuanku Muhriz at the National University of Malaysia (University Kebangsaan Malaysia).
- Dr Raja Juanita Raja Lope from Pantai Hospital
- Dr Ranjini S Sivanesom from Prince Court Medical Center
- Dr Yong Junina from Klinik Pakar Kanak-kanak Junina
We understand that there are many Child Development Specialists in Malaysia, but the above probably has a good working relationship with Dr Musa.
Depending on which Child Development Specialist you wish to see, they have a waiting list.
The waiting lists ranges from 6 months to 9 months. If the child is still young i.e., under 2 years old, then parents can opt to be on the waiting lists.
Since our child was already 3 years and 4 months at the time of pre-diagnosis, we didn’t want to wait any further. We called each of the Specialists, and we decided to meet with Dr Yong Junina in January 2021 itself.
Consultations withDr Yong Junina
We were surprised that our daughter was not afraid of Dr Yong.
When we bring our daughter to regular pediatrician, she would cry when she sees the pediatrician and any general practitioner (GP). Dr Yong really has a perceptive and intuitive way with children. Our daughter was so comfortable with her. Dr Yong did the detailed development test first.
We observed that Dr Yong is agile and able to assess the child in various conditions. When our child wanted to play “outside” of her office and into the common area, Dr Yong followed our child and continued the assessment outside. When our child went back into the room, she followed our child.
She requested the parents’ assistance to communicate with our daughter as part of the assessment, as she knows very well that a child who has just met a doctor may not be comfortable speaking or performing activities requested by a “stranger.” In addition to that, the interior design and lighting of Dr Yong’s clinic is friendly to individuals who are on the spectrum, so they don’t feel overwhelmed or over-stimulated.
Taking the Development Test for Autism
After completing the detailed development test which took an hour, our daughter was confirmed to be delayed in speech as well as fine motor skills. Dr Yong had recommended several facilities for therapies, one of them being WQ Park.
We did our own personal research and spoke with an experienced clinical psychologist from the Thrive Center, the psychologist highly recommended WQ Park and Oasis Palace.
In addition to this, since the cases of COVID-19 were increasing exponentially and both public and private hospitals were admitting COVID-19 patients, we wanted to avoid hospitals all together. After thoughtful consideration, we decided on WQ Park.
Below are the following things I did to rule out any other possibility that may have caused her speech delay:
Eliminating Screen Time
Since speech delay can also be masked as being on the autism spectrum, Dr Yong had advised us to eliminate screen time completely from January 2021 until our scheduled the Autism Diagnostic Observation Schedule (ADOS) in late February 2021.
If our daughter’s speech has improved tremendously due to zero screen time, then the cause is probably screen time.
We Hid the TV!
When we arrived home, the first thing we did was hide the TV. We stopped responding to official or personal messages in front of our children. We had to change our lifestyle drastically.
Thankfully, our youngest daughter did not display any “screen time withdrawal” symptoms. She did not even ask for the TV or other gadgets. Phew!
We had to explain to our elder daughter about her sister and allowed our elder daughter to watch on weekends for a specific duration while the younger sister has her nap time.
I must admit, when we stopped watching TV as a family, we started communicating better and spending more quality time with one another. Our bond with the children improved, and we were a better and happier family unit because of it. More interestingly, our youngest daughter started to speak more. It is by far the best decision we have ever made!
Time flew by so fast and before we knew it, the day for our youngest daughter to undergo the ADOS test has arrived.
We scheduled the appointment on a Saturday so both of us didn’t have to rush back for any urgent meetings. Our daughter was brought to a spacious office, and I sat and observed Dr Yong as she conducted the assessment. The assessment took almost 3 hours.
After the assessment, we were informed by Dr Yong that most Specialists would conduct the assessment in 45 minutes. However, it is her preferred choice to allow the child to warm up and take their time during the assessment. This proved to us that Dr Yong really puts the child’s best interest at heart. If a child has not properly warmed up, we feel that there is a possibility where the child may be mis-diagnosed. It is probably rare but surely mistakes happen.
It’s Official: She is on the Autism Spectrum
Our child was formally and officially diagnosed as moderate on the autism spectrum. It broke our hearts, but we were determined not to focus on the label and focus on helping our child improve.
We proceeded to book weekly therapy sessions for both occupational (to improve on the fine motor skills) as well as speech.
Dr Yong shared with us an actual case of affluent parents who were able to afford hiring a private specialist. The specialist was hired daily. However, the child’s progress was marginal given the daily focus given by the specialist.
The key learning for me is that parents play a very important role in helping their children improve. At WQ Park (I am sure other centers do this as well), the specialists will share the child’s progress, and share what the parents need to do through out the week to build on what the specialists have taught the child.
Informing My Manager and Colleagues
Given the increasing focus that is required, I had informed my manager and colleagues, and thankfully, they were understanding that I would have to be away a few hours a day to bring my daughter to therapy. I would be working from the therapy center but not able to accept any meetings as to avoid disruption or noise the therapy center.
Looking back and reflecting on my experience, I never realized the traits that my daughter exhibited were traits of the autism spectrum. They are as follows:
- When she speaks, she repeats what she says.
- Enjoys playing or doing the same things repeatedly.
- Loves to stack toys, or align clothes peg, or play with toys or things in a certain structured manner.
- Requires a routine. If we divert from the routine, she will have a meltdown.
- Rarely engages in a two-way communication. Often, she is engaged in a one-way conversation.
- Prefers playing on her own, but sometimes she does enjoy joining her sister and cousins in play.
- Doesn’t like to share even though we have tried to teach her the meaning of sharing.
- She is not sociable yet.
With the therapies, it is our hope that she will be more motivated to participate in a two-way conversation and integrate with society.
Quick References as mentioned in the article:
As of January 2021:
|Dr Musa Mohd Nordin||General Pediatrics||KPJ Damansara Specialist Hospital|
|Dr Juriza Ismail||Consultant Pediatrician and Developmental Pediatrician||Child Development Center, in Hospital Tuanku Mukhriz, National University of Malaysia (UKM)|
|Dr Raja Juanita Raja Lope||Consultant Developmental and General Pediatrician||Pantai Hospital Kuala Lumpur|
|Dr Ranjini S Sivanesom||Developmental Pediatrics||Prince Court Medical Center|
|Dr Yong Junina Fadzil||Consultant Pediatrician and Pediatric Cardiologist||Klinik Pakar Kanak-Kanak Junina|
The author notes that each child would exhibit different traits as each child is unique. She hopes that the readers will not compare the author’s child or experiences with the reader’s children, but to gain insights on the process.
Also, she is not a medical professional and is writing based on the author’s own personal readings and experiences. The author is not representing or negating any published or authorized medical facts, journals, documents, etc.
There may be an unlimited number of pediatricians, consultant pediatricians, clinical psychologists in Malaysia, the ones mentioned in the article is from the author’s direct and personal experience.
The author does not represent any of the individuals or the organizations listed but is sharing for the benefit of others based on the author’s personal experience.