Since autism has no physical manifestation it’s hard to know that this child in the middle of a meltdown is autistic.
By Tulika Prasad
A few days back while I was browsing the aisles of a store my nine-year-old son brushed against another customer. I was hoping it wouldn’t 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 replied if that’s the case, I shouldn’t “let him loose” and that she had been watching me let him “walk free!”
My son has a tendency to wander off so I’m hyper-vigilant and ensure that he’s literally at arm’s length from me. So clearly he wasn’t 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 offense, there clearly are some who feel extremely overwhelmed by coming in contact with a nine-year-old and make sure I’m taken to task for that.
Although I should have been livid and given that lady a piece of my mind, I instead said nothing and walked away. Not because I knew she was right and I was apologetic but because she did not deserve my time. She barely qualified for my forgiveness.
Over the last six 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 others 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.
A while back it mattered to me that people understood 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. 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’s not unusual for people to turn around and look. Since autism has no physical manifestation it’s hard to know that this child in the middle of a meltdown is autistic. So to 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 can’t know that just by looking at you. So I don’t expect you to know my story simply because I’m with a child who is acting a little different. If you don’t 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 try to understand rather than speculate.
When I hear about someone’s loss I’ve 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 for words. You aren’t sure how to respond. 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 can say, “I’m here if you need me,” and mean it.
Six years back when the doctor said “autism,” I was clueless as to what that meant. I had no idea what to expect and what challenges our family would face. I hadn’t even heard of this diagnosis until he was diagnosed. 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 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 shouldn’t be doing what I do; 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 advocating is – to forgive.
As I write this post, I watch my son sleeping next to me, the light of my screen lighting up his beautiful face while everything around him melts (fades, maybe?) into the darkness of the night; the sound of his gentle breath rising above the cacophony of voices that pull me down every day. This is the picture that wants me 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.
Tulika Prasad is mom to a nine-year old amazing boy named Vedant. He was diagnosed with Autism when he was 3. It took Tulika some time to come to terms with this diagnosis and then a few more to come out and share it with the world. The journey so far has culminated in a blog www.braindroplets.com where she shares her family’s stories – from meltdowns to miracles, from challenges to victories and everything in between. Tulika describes herself as “a software developer by education and an Autism mom by experience.”