A few days back, while I was browsing the aisles of a store, my 9 yr old son brushed against another customer. I was hoping it would not be a big deal but she had something else in mind. I said sorry and explained that my son is autistic. She was not ready for that excuse and said that if that’s the case, I shouldn’t “let him loose” and that she has been watching me let him “walk free “!!! My son has a tendency to wander off so I’m hyper-vigilant and ensure that my son is literally at palm’s length from me. So clearly, he was not running amok. Besides, he has issues with personal space so he tends to reach out and touch people who come his way every once in a while. While not many people take offence , there clearly are some who feel extremely overwhelmed by coming in contact with a 9 yr old and make sure they are taken to task for that.
Although I should have been livid and given that lady a piece of my mind, I walked away. Not because she was right and I was apologetic, but because she did not deserve my time. She barely qualified for my forgiveness.
Over the last 6 years since my son’s diagnosis, I’ve come across several kinds of people when I go out with my son. Some are polite and empathetic, some curious, some outright rude, and some completely indifferent. That’s how the world is and that’s how it’s always going to be. With the hard work of all the advocacy groups the balance may shift in favor of people like my son, but there will always be people who will not be kind enough or understanding enough. Until sometime back it mattered to me that people understand my journey; every other stranger out there who looked at my son — they had to know what we were going through. That was an unrealistic expectation and I’ve learnt that over time.
When I see something out of the ordinary, I take a second look. So, when my child in throwing a tantrum or rolling on the floor in the middle of a store, it is not unusual for people to turn around and look. Since autism has no physical manifestation, it’s hard to know that the child in the middle of a meltdown is autistic. So all those onlookers, who instead of going on with their own business or lending me a helping hand decided to stand and judge me — I’m going to forgive you.
I don’t know your journey. I have no clue what you might be going through right this moment. If you are having a hard time at work, going through a rough patch, or having challenges emotionally. I cannot know that just by looking at you. So, I don’t expect you to know my story simply because I’m walking with a child who is acting a little different. If you do not appreciate my challenges and you make an insensitive remark, I’m going to give you the benefit of the doubt, although I would hope that the next time you would rather try to know than speculate.
When I hear about someone’s loss, I have avoided talking to them for fear of not knowing what to say. So when I share my son’s diagnosis with you, I know you are at a loss of words. You are not sure how to respond. So when you say you are sorry and show pity, I know you do not mean it in a bad way. You probably could not think of something more comforting to say so I understand. But, next time when someone shares the diagnosis with you, maybe you want to say, I’m here if you need me and mean it too.
Six years back when the doctor said Autism, I was clueless as to what it is. I had no idea what to expect and what challenges our family will be facing. I had not even heard of this diagnosis until then. So when you look at me with that puzzled expression when I mention Autism and then say “He’ll grow out of it” or “you worry too much” or “ he doesn’t look like he is special needs”, I’m going to smile and let it slide. I don’t expect you to know about it if you don’t have a loved one or a friend on the spectrum. However, wouldn’t it have been nice if you said, “I don’t know much about autism. Tell me more”. Isn’t admitting ignorance better than pretending knowledge ?
How many times have you looked at a mom trying to force feed her child and been tempted to give her a parenting advice? We all feel like experts when it comes to someone else’s problems. Unlike other moms, my mom’s hat probably comes with a big banner that says “I need advice” because I happen to have an autistic child. So I completely get it when you look at me and think I need some of your parenting expertise because you happen to raise a completely “normal” child. I will stand next to you and listen to your tips and tricks and how I should be doing what I do because probably, like everyone else you think I’m doing it all wrong and hence the autism. I do, though, wish you had said “how can I help?” or “ I understand it’s challenging”, instead.
There is so much misunderstanding and misinformation around my son’s diagnosis and there is so little acceptance for him that the only positive thing that I can do apart from advocate is – to forgive.
As I write this post, I watch my son sleeping next to me, the ambient light of my screen lighting up his beautiful face while everything around him fades into the darkness of the night; the sound of his gentle breath rising above the cacophony of voices that pull me down everyday. This is the picture that makes me want to stay positive and gives me hope that one day it will all be ok for him.That one day there will be fewer who will need forgiveness and more who will understand.
Disclaimer: The opinions expressed in this post are the personal views of the author. They do not necessarily reflect the views of PatientNextDoor. Any omissions or errors are the author’s and PatientNextDoor does not assume any liability or responsibility for them.
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