Parent Spotlight: Raising Teenagers in the ASD Spectrum (Part 2)

“Parenting for autism individuals is hard work or rather, ‘heart work’, I would say. That doesn’t mean I do not experience many joyful moments when my sons achieve something they try so hard to do. But that also doesn’t discount the heartache at night after they go to bed thinking, leaving me to think about what may happen to them when I am gone…” – Mr. Yong Yek Ming
A prominent name and presence in the community, we are extremely grateful to have Mr. Yong share his heartfelt journey as a single parent to two teenage sons with us. His hope, along with ours, is to fuel more awareness surrounding Autism with good faith that through education, we can help steer our society towards being more loving, kind, compassionate and inclusive place for all individuals, one empowering step at a time. And here is his story…

Overcoming Challenges As A Parent…

“An initial challenge for us  as parents was to accept that WJ was autistic. It was another to – only just one year later – find out that WX was also autistic.

“Thereafter, going through phases of denial and blame game of who’s gene brought about the Autism, we both learned to accept it after 6 months and start looking for help to manage and started early intervention programs.

“Other challenges also included going through rejections from kindergartens and all activity centres like music and art. At the time, there was almost no Autism awareness at all. Getting therapists and professional help meant having to source from overseas contacts including USA and Australia.”

“Another challenge was when they had to attend primary school. At that time, the only choice we had was at a public primary school within a ‘special class’. Special classes in Malaysia were designed for other disabilities but not Autism. Hence, during their primary school years, I spent all my time sitting at the canteen. Whenever they have issues, the teachers will come to the canteen looking for me.”

“One of the biggest contributors to the challenges we faced was that it was time when the awareness surrounding Autism was extremely low. Autism does not have ‘a look’ unlike Cerebral Palsy or Down Syndrome. In fact, Autistic children look like any other kids except when it comes to their social skills and behaviour. We received a lot of stares and unwanted comments that really made us sad. However, despite it all, I refuse to lock them in the house and continue bringing them out and exposing them.

“In 2015, I allowed a film director to follow us for almost 3 years to learn about our lives as a family navigating through Autism. She produced an Internationally acclaimed film titled “Beautiful Pain” or “Redha” in Malay.

Watch the movie trailer here.

“After the film was released, the awareness surrounding Autism has improved so much that we don’t really get the kind of stares or unwanted comments as much anymore.”

Seeing Rainbows After The Rain…

“Autism individuals are the purest form of human beings. They do not pretend nor wear a superficial mask to fit into the society. We live in a world where we largely choose to say things or act in ways that are deemed acceptable by the masses, even when we do not agree nor accept something. For them, they will say or react exactly how they are feeling or thinking. Hence, this puts them at risk of being considered as rude or kurang ajar in the eyes of those who do not understand Autism.

“Any milestones or achievements bring much joy to us as a parent, no matter how small or insignificant they may seem to others. Over time, I’ve learned to cherish them as they are and be happy for whatever they can do and are able to accomplish.

“WJ won the Johnson & Johnson Baby of the Year when he was 2 years old. WX has a very good photographic memory and is very good in Arts and Music, too. However, I believe they should just enjoy what they are good at, whilst still learning to be independent. This is also why I never push them to pursue those abilities beyond letting them enjoy it.”

Navigating Sexual Development Stages…

“Sexual desire is a natural human instinct. I believe they do not have the desire for sexual encounters with a female as per se. They eventually discover the feelings of pleasure through accidental sexual acts such as when they accidentally rub their genitals against a pillow or a bolster. We should not stop them from exploring this desire of rubbing and ejaculating.

“They will grow tired of it as time passes because this is not a desire that is aroused from seeing a female. They are aroused because of accidental acts, which make them feel good. If they are doing the rubbing publicly or even in the house, I will ask them to go to their room and close the door. “Do this in your room, you cannot do it here”. When they are done, I will teach and guide them to clean themselves up.

“In actual fact, the rubbing has reduce to almost zero, but they do have wet dreams, I think this is normal because of how we, as humans are designed to be.”

Managing Routine Disruptions In A Time Of COVID-19…

“The MCO has turned their routines and activities upside down, especially for WX, where he had to miss his swimming classes, therapy sessions and school (he graduated from SMK in 2020 but attended only one month of classes).

“Another challenge is finding alternative activities at home that they can do to keep them occupied. I took this opportunity to teach them basic house chores including cooking, doing laundry and more. Instead of going to the mall, we find ourselves ending up at the beach or a park. These are much better and healthier alternatives.”

“Due to WX’s rigidity for example, every Wednesday he has a swimming class. He will ask repeatedly about it and ask to go for the swimming lesson in Shah Alam. I tell him “Swimming Lesson is closed because of the Corona virus, let’s go to the beach instead”. Try offering an alternative and they will usually be okay with it. But sadly, the nearest beach is about 65km away.”

3 Big Lessons Learned, And To Pass On…

  1. “Looking back, I wish I knew more about the impact of puberty and hormone changes on their behaviour. I too, was a first time parent and I have no experience whatsoever. Nowadays, online resources are plentiful – be prepared and do your research.”
  • When they reach puberty stage, it is important to increase their activities especially more physical-skewed. These activities will help them drain extra energy, calm them down and sleep better too.”
  • “Avoid doing nothing, keep them occupied with anything. House chores are good to train them to be discipline and to help out. Not indulging in any physical activities WILL contribute to their weight increase. If and when they are obese and much heavier to manage physically, that’s when bigger problems arise, especially during a tantrum or a meltdown.”

“If there is one last thing I’d like to add, it is that you shouldn’t keep your child at home because of how people view them. The awareness really starts from us as the parent, to show and tell, hence to teach. I believe that deep down, all humans are kind, there just needs to be more education and acceptance around Autism in the society for everyone to be more compassionate towards each other.”

For those who missed the starting, click on Part 1 of Parent Spotlight: Raising Teenagers in the ASD Spectrum