Living with autism - Life on a spectrum and on not giving up

02 Apr 2023 09:10am
Aydan never has a boring day. There are good days and bad days. Milestones and regressions.
Aydan never has a boring day. There are good days and bad days. Milestones and regressions.

My world changed the day my son now nine was diagnosed with Autism. I was thrown headfirst into the abyss of something I could not possibly begin to describe.

As a mother I went into protective mama bear mode, then came the need to know everything I could to understand, what it is and how it would affect him and us and possibly how we move as family in this world.

Autism Spectrum Disorder (ASD) is a term used to refer to a group of conditions related to brain development previously thought to be separate, including autism and Asperger's syndrome.

Each person with ASD has their own pattern of behaviours. But, in general, they may have challenges picking up on social cues and perform repetitive behaviours, which may manifest as rituals or becoming fixated on specific interests, for instance, Mayo Clinic says.

According to the most recent data available from Centre for Disease Control (CDC), about one in 68 children have autism, and the disorder is 4.5 times more common in boys than girls. That would mean that approximately 9,000 children in Malaysia are born with autism every year.

However, recent research suggests that the disorder may manifest differently in girls, possibly in ways that are overlooked by our current diagnostic methods. So our understanding of ASD — and how to make life easier for those with the condition — is still very much developing.

Raising a child with Autism has its share of challenges, sadness and joys, and it’s not always easy to express them. Oftentimes, I hold my tongue, knowing that most people have the best of intentions even if they misunderstand our world.

While sometimes it’s best to leave things unsaid, I feel a responsibility and duty towards Aydan (my son) to bring as much awareness, education and discussions surrounding autism to the forefront.

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I try to do that with everyone we meet—give them a quick run down of who he is, why he reacts (or doesn't react) in a certain way, just to help people understand and receive him better.

It is the first thing I say when I meet people to get it out of the way. I say my son is autistic and often people react kindly but often people think I am taking it too far and milking it.

If there is anything that Aydan’s autism has thought me is to develop a thick skin. I am mostly immune to insults about his peculiar behaviours, his stimming (where he flaps his hands about in excitement) or where people even close family members recoil from being near us as if autism can infect like a virus!

Autism is the most humbling, frustrating, mysterious thing I never thought I would have to tackle. But this little boy -- he is the sweetest, kindest, most loving (and stubborn) guy I've ever known. I am so proud to be his mama and most days contain many tears and some laughs too.

Autism is constantly teaching us how to be better for him, how to be more patient, and how to think outside the box.

Every day is unpredictable.

Aydan never has a boring day. There are good days and bad days. Milestones and regressions.

Over the years, I have come to learn that a diagnosis is simply a diagnosis and nothing more.

It does not define who your child is. Autism or ASD (autism spectrum disorder) is a spectrum disorder that includes a large range of linked conditions. It doesn't come with a manual. It comes with a parent who never gives up.

Autism is one of the fastest growing disorders with a great amount of studies being put behind it. Dr Stephen Shore once said, “When you meet one person with Autism, you’ve met one person with Autism”.

This is a popular quote that highlights how Autism is very diverse. However, like typical developing individuals, people with autism have different personalities, likes and dislikes. In many ways, Autism can impact an individual, but it does not define an individual.

My son has taught me more about life in the last nine years he has been here, than I could have ever imagined. He has taught me to be brave, to be strong, to be courageous. He has taught me that even when you're tired and feel like you are at a standstill, you can keep going.

He has taught me that there are many other ways of communication than simply just speaking. He has shown me how incredibly exciting viewing the world from a different angle can be!

On some days we struggle. We struggle a lot. And on other days we accomplish and overcome a lot. We worry about many things. About him knowing how loved he is, about his future, about him going to school, about people being mean to him, about people knowing he’s a bit different, and just about his life in general. I have seen the sheer goodness of community and the cruelty of ignorance.

But I have to remember worrying won't get us anywhere right now. What is meant to be, will always be.

So on World Autism Day, I wish for everyone to be a little bit more kind, a little curious, a little understanding. Next time you see a child and they seem off, you’re intuition is probably correct.

Give that child a warm smile, and extend it to their parents who are probably nearby and holding their breath. Because 99 per cent of their energy goes into what you don’t see, and they’re probably feeling anxious and hypervigilant.

Because judgement and shaming helps no one, but a warm smile can absolutely make someone’s day.

Today’s a beautiful day to give a child and their parents the benefit of the doubt. Today is the perfect day to teach your children to be inclusive and to have compassion for those who act different.

I hope somehow with this I have managed to open your heart and eyes to autism, and to understand people are different, families are different, and there is no one-size-fits-all.

People might have differing opinions to my approach but to me the more we talk about it and the more we introduce others to incredible people that are on the autism spectrum, the more we’ll have acceptance.