Happy World Autism Awareness Day! It’s crazy to think that around five years ago, the thought of celebrating it would’ve never crossed my mind, and admittedly, I knew next to nothing of the developmental disorder—aside from watching actor Freddie Highmore play autistic genius Shawn Murphy on The Good Doctor. As fate would have it, I would come to have a son of my own who is on the spectrum, and I have since learned so much about what it means to be neurodivergent by going on this at times peculiar, yet beautiful journey with him.
There is no single leading cause of Autism Spectrum Disorder (ASD), although scientists have found that genetics, combined with environmental factors and other biological causes, are involved. For the uninitiated, ASD is a lifelong neurological condition affecting how people think, behave and interact. As the word ‘spectrum’ suggests, there is a vast range of symptoms and severity that people experience, and no one autistic person is the same.
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While the condition is hard to detect in infants, I had an inkling that my son, Rayhan, was atypical when he was slightly over a year old, as he wasn’t consistently responding to his name. Furthermore, he hardly smiled when we played interactive games such as Head, Shoulders, Knees and Toes or Peek-a-Boo, and he seemed intensely interested in very specific things like lining up the letters of the alphabet in a neat order or playing with shapes. However, at such a young age, that didn’t feel like a huge enough concern for my husband and me, especially since each child reaches their developmental milestones at different times. Moreover, Rayhan’s paediatrician agreed to wait another year to see his progress before consulting a specialist.
Then came the language delay at two years old. Rayhan had developed his own interests but wasn’t able to express them verbally. He had his favourite toys, activities and songs, and I wanted him to communicate them to me so badly, and yet, we would both get frustrated each time he wasn’t able to. As my husband and I were working full-time jobs, we decided to send him to a neighbourhood nursery in hopes that by being around other kids, he would be able to socialise and catch up on his speech. However, that proved difficult as he constantly needed extra support from his teachers compared to his peers.
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We then felt it was time to get help from a Child Development Specialist, who, after a series of observations, tests and evaluations, confirmed what we already knew deep down in our hearts—that our sweet, beautiful little boy had high-functioning autism. At that point, the diagnosis wasn’t that difficult to accept, and instead, only made us more determined to get all the information and tools we needed to support Rayhan.
Today, he’s six years old and has improved tremendously. He can speak, knows how to do mathematics (specifically multiplication), loves learning the different alphabets of different languages, and so much more. It’s been a long, anxiety-ridden journey, and we still take every day as it comes as a slight difference in routine can undo certain progress he’s made. With all the information I now know about being a parent to a child on the spectrum, I’d like to share some of the lessons I’ve learnt for those who are in the same situation as I am or once was. Please know that these are my personal experiences, and you may merely use them as a reference in your journey.
Early diagnosis is key
Trust your instinct. As I mentioned before, I had a feeling that my son wasn’t progressing the same way a neurotypical did at as early as one year old, but I decided to wait another year before getting professional help. While I don’t exactly have any regrets, recognising your concerns early is important as it allows you to seek treatment that will improve your child’s development and quality of life.
Another important thing to note is that there are only a handful of Child Developmental Specialists here in Malaysia that can actually give you an official autism assessment and diagnosis, and the waiting list to see them can take up to six months to a year, so the earlier you make that appointment, the better.
Autism acceptance
Every parent dreams of having the perfect child, and when life throws you a curveball like this, you either fight or flee. Denial is a huge part of most autism diagnoses as many parents refuse to accept the label—especially with the stigma still surrounding the disorder—hoping their child will grow out of it. It’s fine to feel that way; you are allowed to feel angry, digest and grieve. But make sure to recover and then follow through with new plans and routines if you truly want the best for your kid. If I’m being completely honest, I still sometimes hope that Rayhan will eventually be able to function as normally as any other person would. Still, until that happens, we will keep on keeping on.
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Early intervention
Whether you’ve read up on it yourself or heard it from your Child Development Specialist, an Early Intervention Programme (EIP) will be one of the very first tools in helping your child get the support they need to go through life with autism. This programme identifies your child’s specific needs and focuses on the areas of growth they are currently struggling with. There are four main components of EIP: occupational therapy to help with fine motor skills; speech therapy to help with speech, language and communication; physiotherapy for gross motor skills, balance and coordination; and psychological treatment to help with behavioural and social skills.
A comprehensive programme covers a combination of these therapies as your child will need different help at different stages of their development. Rayhan currently attends Gilmore House in Cyberjaya, which offers a fun, play-based environment that makes learning a positive and enjoyable experience.
Not all autistic kids are the same
The autism spectrum is not linear, and while there are defining symptoms that allow the specialist to diagnose the disorder, each autistic person is unique. Take Rayhan, for example. Before he was verbal, he picked up reading on his own at two years old and would use his wooden alphabet letters to spell out things he wanted, such as water, iPad or play. I would then learn that with autism, he has hyperlexia, which, opposite to dyslexia, is an advanced learning ability that allows him to read and decode numbers well before he’s expected to.
The need for routine
Any regular human being needs daily routines in order to function and maintain good mental health. For an autistic child who has difficulty making sense of the world, routines are incredibly helpful in bringing predictability, stability and comfort to their lives, thus allowing them to be more independent.
Your need for a support system
Having an autistic kid can feel alienating for parents as they go through their challenges, so whether it’s your own family, friends or other parents with autistic kids, find your tribe. During the pandemic, my husband and I decided to move back into my parents’ house for extra support, and they have tremendously helped take the load off raising a special needs child as we juggle full-time work. Know that you shouldn’t have to go through your struggles alone and that there are plenty of support, organisations, and programmes out there that will help make life more manageable for you.
Find resources to help you cope
There are days when you’ll feel like you don’t know enough or are not doing enough for your child. Looking at other parents or autism resources will help you break through that wall. Here’s where I look for daily strength and information.
Adam’s Autism family
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This social account created by Iman Wan recounts the genuine and raw autism journey of his grown up son Adam, his family of six and their day-to-day experiences.
Autism Cafe Project
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Adli Yahya, the father to Luqman Shariff who’s on the spectrum, provides the opportunity for ASD kids to find employment in a safe space at his cafe.
And Next Comes L
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This is an informative autism and hyperlexia website that offers details to help overwhelmed parents make sense of the diagnosis and better understand what it means.
Autism Supermoms
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I scroll through this account for a daily boost of empowerment, emotional support, and much-needed reminders.
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