5 ways my son’s autism diagnosis has changed me

My son Arif is 7 years old. He was diagnosed with Autism Spectrum Disorder when he was two and a half years old. Raising a child with autism comes with its own set of unique challenges. At the time of the diagnosis, I knew nothing about autism, so it has been a continuous learning curve. There are also financial, physical and emotional demands that we can never fully prepare ourselves for.

However, raising a child with autism is also filled with positive, humbling and rewarding experiences. My son’s autism diagnosis has changed our lives in many ways, but today, I’d like to share a few of the ways it changed me for the better:

It redefined my priorities

Noticing developmental delays and autism red flags, I insisted that we take Arif for a professional assessment. After the doctor’s appointment, I sat in the car holding the doctor’s diagnosis in my hands, and I cried. Firstly, I was relieved to finally know what was going on with him. And secondly, I was afraid that I wouldn’t be strong enough or able to help him overcome all the challenges he would be facing in life. It made me reevaluate my priorities almost immediately. And many of the things that I considered “important” before were suddenly not so important anymore.

I learnt to say “no” and work less

Around the time my son was diagnosed, I was earning a living as a freelance writer. When I realised the costs that autism therapies would entail, I went into a kind of overdrive. I took on lots of projects back-to-back and sacrificed rest to get more work done. Though I was able to save up, it came at a price. By the end of the year, I felt burned out. Worse still, I put myself through that again the next year. I realised that this was no way to go forward, so I decided to be more selective of the work that I take on. I learned to say “NO” and this quote has become a useful self-reminder:

“I don’t say NO because I am so busy. I say NO because I don’t want to be so busy.”

I embraced minimalism

I used to be a collector, I loved collecting things. But when autism became a part of my life, collectibles lost their appeal. I started evaluating my wants and needs, and I found myself not wanting more ‘stuff’. So I started to embrace a more minimal way of life, for two reasons. First, I no longer wanted to spend money on unnecessary things, but put it towards Arif’s needs instead. I also wanted to declutter our home, so that it would be safer and less visually-stimulating for Arif.

I learned to “separate the chaff from the wheat”

After the diagnosis, there was so much to learn, and there was a sense of urgency to learn as much as possible, quickly. There were so many unfamiliar terms and abbreviations to grapple with– Autism Spectrum Disorder (ASD), Sensory Processing Disorder (SPD), Attention Deficiency Hyperactive Disorder (ADHD), feeding problems, sensory meltdowns, behaviour issues, learning difficulties, proprioception, vestibular and many more. I was always searching for answers, but often, what I got was unsolicited advice. Autism cures, misconceptions and myths were often eagerly shared with me. I had to be able to separate fact from fiction, and take my time to take in and digest information. A fellow autism parent shared a saying that aptly describes how bewildering it could be:

“Being an autism parent is like flying a plane for the first time, without a manual, in the dark, while all the passengers are telling you what you’re doing wrong.”

I became a parent advocate

Autism is often called an “invisible disability,” since the conditions or challenges are not physically obvious. Because of this, when Arif stims, behaves in an atypical manner or has a meltdown in public, people often assume the worse. Either I’m a bad parent, or he’s a spoiled child, or both. There have been countless stares, disapproving looks, nasty comments and tuts directed our way. As the mother of a child with autism, I try and help family and friends to understand more about the disorder, as well as what Arif needs and how they can interact with him. Before the pandemic hit, a couple of friends and I started a playgroup for special needs children at our local mosque. It was a great way to meet other parents, learn from each other, and create a supportive community.

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