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Unedited: Parenting a child with autism

Posted on April 25 2023

In celebration of Autism Awareness Month, Motherswork speaks to editorial director Ivan Lim, whose 17-year-old son Alex is autistic.

 

Though Alex finds it difficult to speak to people he is unfamiliar with, the talented teen uses canvas and paint to communicate.

 

His mother Cara, who is an artist, coaches Alex in his art. He has also learnt various classical techniques from art teachers in Singapore and Germany. The visual arts student has already had several exhibitions and his art can also be viewed online at www.theunskilledboy.com. His newest paintings will be exhibited in the Shaping Hearts Arts Festival from November.

 

According to the Autism Resource Centre (Singapore), autism is a lifelong developmental disability that affects a person’s ability to make sense of the world and relate with others.

 

Since autism is a spectrum condition, no two persons diagnosed with autism are the same and individuals with the condition will have differing degrees of autism. Some traits of autism include social impairment and difficulties in communication.

 

Q&A with Ivan Lim


Q: Could you tell us about Alex? What is he like as a person? What does being on the autism spectrum mean for Alex?

 

A: Alex is a lovely child, and at 1.8m, he’s a cheeky but gentle giant. He is active and loves his walks, and would often run with gay abandon whenever there is a wide open space in front of him. He loves drawing and painting. He is able to identify the flag of every sovereign country, name their administrative capitals and spell these without the benefit of spellcheck. He can sing the national anthems of many countries even if these are in languages he does not speak. He is talkative, too, when not engaged in his artistic endeavours.

 

However, it is not easy to have a conversation with him if he is not already familiar with you. He is very childlike and innocent in his behaviour and mannerisms, despite his size. And he still has a baby face.

 

Q: What have been some of the biggest challenges for you as a parent? Could you share some struggles you’ve experienced that parents of neurotypical children don’t have to go through?


A: Alex would occasionally suffer from meltdowns which are triggered by car honks, the sharp shrieks and squeals of little children and various other loud noises. These have been significantly reduced as he grows, and we have measures to prevent these such as noise-cancelling headphones, casing a venue so that we know what the fastest route to the carpark is in case we need to escape in a hurry, but no counter-measure is foolproof so we are always mindful of the triggers and are constantly prepared to help him calm down when necessary.

 

As a parent, having to put up with the unfriendly glower of a crowd of onlookers as we tried to calm him down or evacuate him used to be painful. They could be thinking, what a horrible child (ouch), what a horrible parent (not great, but better) or both (oh, well…). But I’ve since learnt to ignore the looks while doing my best to keep Alex safe. These meltdowns would look like the tantrum of a very spoiled child, especially to those who are unfamiliar with autism and how the condition can manifest itself. Other struggles are worrying how he would cope without us around, like school.

 

He is currently in the vocational track of Pathlight School where he is learning skills that might help him get employment, and while most parents would expect their children to excel academically, we are just grateful that Alex retains his place at school.

Q: What are some happy memories you have as a parent? What are you most proud of as a father?

 

To all parents, the child’s first words were an important milestone, and for Alex and me, it was no different. He was really young and was with me and we were playing with some toys when he reached out, patted me on my lap and proclaimed, “Papa, Papa.”

 

We also made weekly trips to the zoo because he loves animals though he seems to have outgrown that interest somewhat. I suppose for me, the discovery that Alex is just amazing at spelling (demonstrated in the aforesaid ability to name and spell the administrative capitals of every sovereign state on this planet) and has an astounding memory (yes, the ability to recognise flags are an instance; he will also remember everything that you tell him) are among the things about him I’m quite proud of, but it is his ability to express himself artistically is what I’m extremely proud of.

 

He has so far had several exhibitions for his art [you can see his work as The Unskilled Boy on his website, [www.theunskilledboy.com] and collaborations, including with Singapore apparel brand, Plain Prints Project [www.plainprintsproject.com].

 

Q: What were you most anxious about when Alex was growing up? Was there anything you were fearful of for him?

 

A: Despite having a wonderful memory and a great artistic inclination, Alex had learning difficulties, so I was constantly worried that he would struggle academically. We realised when he was 15 that the more sensible thing to do for his education was to let him take the vocational track where he would learn the skills required to thrive in a working environment.

 

Also, growing up, Alex would sometimes have meltdowns during which he would bang his head against a wall or a similarly hard object, or throw himself to the ground, so we were always fearing for his safety. But these episodes have thankfully diminished, and even if they did surface, we now have a gameplan to deal with these swiftly and safely.

 

Q: What are some misconceptions that people have about those on the autism spectrum? Any pet peeves that you’d like to talk about?

 

A: When Alex was very young, my wife Cara and I were loath to tell anyone that Alex was autistic. Shockingly, during a visit to a doctor when Alex was just two years old and had just been diagnosed as being on the autism spectrum, the doctor made an astounding assumption that Alex was autistic because I did not pay him enough attention. She addressed every question about his activities to our helper, practically ignoring me other than to insult me for being a bad parent. Also, we had people telling us they were sorry that Alex was autistic, as if that made him any less human.

 

Alex was once denied music education at a prominent music school because the teacher was advised by his wife, whom he said was a medical nurse, against teaching him because he was on the autism spectrum. I made a post that went viral and was picked up by the mainstream media. The school made a huge and sincere apology afterwards and several other music schools offered free music tuition to Alex. We respectfully declined these as we were not looking for a freebie – we were prepared to pay the full economic rate for music tuition as we simply wanted Alex to be treated like they would any other human being.

 

Despite the various efforts at pushing for awareness of autism, it is frustrating to see that this awareness of the condition has not changed the perception of many towards people with autism, so the curious stares and looks of contempt continue. Awareness needs to be followed up with acceptance for any sort of advocacy to have any real meaning.

 

Also, during that episode where the teacher refused to teach him because of his autism, we were aware that some of our friends were working at the school, and some of them were even advocates of autism or had performed some form of advocacy. No attempt was made on their part to reach out to us, which made me wonder about the sincerity of such advocates! That said, I often have to remind Alex and myself that we are by no means entitled to any sort of special treatment just because he is on the autism spectrum.

Q: What would you say to parents who have young children with autism? What’s one encouragement or lesson that you’d like to share?

 

A: That they are everything to their children, autistic or not. There will be setbacks in this fascinating journey of parenting a child with special needs, but there is help available should they ever need it.

 

For me, as a parent of an autistic child, Alex’s happiness and an opportunity to live a full life are my priorities. I’ve often spoken about his autism, yet there will be people who would exhibit a lack of  understanding or a refusal to accept the condition, but it is OK – there will be many others who will provide genuine support when required.

 

Your autistic child is no less a person than a neurotypical one, and loves you as much as any child would love their parent even if they struggle to communicate this to you. They express their love differently because they are different. They are special and need their parents to be special, too.

 

Q: Now that Alex will be turning 18 soon, what does adulthood mean for Alex and for you as his father?

 

A: As I said earlier, Alex is still very childlike and requires a caregiver to be present with him almost all the time, except when he goes to bed. We are working towards helping him to be more independent because Cara and I are well aware that we will not be around forever to hold his hand.

 

Q: What are your hopes for Alex?

 

A: That he leads a happy and fulfilling life, that he never feels alone and that he never gets bullied when we are gone. Cara, who is an artist, is coaching Alex in his art as he has shown great interest and aptitude for it. We hope that he will be able to thrive as an artist and find fulfilment in all his artistic pursuits.

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