The good, the bad and the ugly of autism

Tulika Prasad

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Many have asked me how it felt when my son was diagnosed. I’ve tried thinking back to that moment and all I can see is a blur. I don’t remember that instant. I was probably numb and dumbfounded. I don’t recall any feeling going through my mind. That was how hard the diagnosis struck me. It was like a romance, but different... it left me dizzy and swept me off my feet except that the warm fuzzy feeling was missing. It gave me cold feet instead. As we grew with our son, we got to know autism closely, and now if you ask me, I can tell you exactly how I feel about it.

As I’ve said numerous times, for something that consumes our lives completely in so many extraordinary ways, we have a unique relationship with autism. It’s the good, the bad and the ugly of our being now.

The good
My son’s autism brought about a plethora of change in me and I think I rediscovered myself because of his autism. I never knew I could advocate the way I do. I found my patience, finally (or so I think), I’m more compassionate and as I made peace with my son’s autism, I feel like what I want from life has changed drastically. I’ve learnt to appreciate the smaller things in life and really find meaning in the mundane.

I’ve met some extraordinary people along the way and have been humbled by their tenacity and resilience. It has shown me the side of life I was completely oblivious of.

My son’s autism has indeed changed us as a family and made us more sensitive and humane. His autism makes him extraordinary and unique. It makes him a pure soul, someone with not an iota of malice in him because he is untouched by hatred, jealousy, deception and all the other vices. It also makes him a warrior.

The Bad
Here is when you face the day-to-day reality of autism. It’s when you see that your child stands all alone in a sea of little kids running around him and playing in groups. Bad is the fact that he has not a single friend, no one who wants to have a sleepover with him, no birthdays to attend, no play-dates to be invited to.

The bad hits me hard when I see him grapple to express himself and then get frustrated and give up. The bad is when he comes back from school with a bruise and I have no way to ask him what happened.

I see him struggle with sounds, textures and everything that the world around him overwhelms him with and still manage to hang on somehow, that’s is when the bad quietly peeks in. The constant fear of him wandering off or putting something unsafe in his mouth is what is bad about his autism. The fact that he loves going on vacations but gets so anxious the moment he gets into the hotel room that he throws up all night is what is bad.

Sitting on the side of a boardwalk, watching him have a meltdown as he rolls in sand and covers his eyes and hair with it is what is bad.

His inability to cope with change, his obsession for certain things that consume him completely and affect his awareness, his indifference and detachment, the fact that he still needs me to help him through his daily routines - these and many more like these are what makes autism the bane of our lives.

The ugly
The sleepless nights, where the worry of what the future holds for my son rolls out of my eyes for hours is what makes autism unbearable. The helplessness of watching him in discomfort but not knowing what is wrong because he cannot tell us is probably among the top reasons why I find his autism ugly. That I have thoughts where I want to outlive my son so that I can be by his side and take care of him always is what makes autism absolutely detestable.

There are many autistic individuals who can communicate, express and live relatively independently and are proud of their autism. They believe autism defines them. I stand by them and they inspire me. However, autism unfortunately comes in many other forms, some more challenging than others. Some, where an individual needs constant support to meet even their basic needs, some, where multiple seizures are the norm of the day, some, where sensory issues make it impossible to live a normal life, some who are non-verbal and have no means to communicate, some that deal with major intellectual disability that impairs their quality of life. Those kinds of autism are not what you wish your child would have to live with for the rest of their lives.

I love every bit of my son. I even love his shadow. I love his smell, his smile, his sound, his every little thing. His dad and I have often talked about how wonderful it would be if our son started talking and turn into a neurotypical child and then immediately we realise how much we would miss our amazing little guy if he changed. We adore him the way he is, and he is perfect for us. We just don’t happen to have the same kind of affection for his autism all the time.