The Challenges of Being Out & About

Recently three stories have been making the rounds on social media. The first one is about a California family with a severely autistic child who are being sued by their neighbours on the contention that they have failed to stop their child from being a menace to other children. The second story is about the autistic child who interrupted a Broadway performance, whose mum was shamed by fellow theater goers, and who subsequently got a heart warming show of support from the show’s leading actor. The third is a blog post from a mum who writes about how no one talks about the not-so-feel-good aspects of autism, how often families are made to feel shame for their child’s antisocial behaviour.

So in this post I want to explore those subtle ways in which we have been made to feel uncomfortable when out and about because of our child’s autistic behaviour. Aiden, we’ve discovered, loves to use public transport. And after our recent move we have had the opportunity to frequently use buses and trains. He loves boarding the bus, when we are queuing to board he always says a loud “Everybody, on the bus!” and then enjoys sharing the communal experience. Yesterday we happened to take the bus after a break of something like ten days. As a result Aiden was terribly excited and in his happiness he spent the entire bus ride indulging in echolalia and making his happy noises. His happy noises are equivalent to the happy gurgling sounds a toddler would make, except that they are coming from a tall 4 year old boy. Now these happy sounds and the repeated dialogues from his favourite books and shows are not loud enough to disrupt someone else’s commute but people in our immediate vicinity can hear him. And it’s very interesting how people react: a taxi driver who asked me outright, “Is he always this happy?”, and I told him yes, he’s a happy autistic child; a super friendly elderly lady who started playing a non verbal laughing game with him, and knowing full well that Aiden is atypical and “not normal” told me she thought he is one of the most beautiful little people she’s met; and then people whose body language changes when they hear him, there is this subtle turning towards us, the furtive glance in his direction, the slightly embarrassed smile and quick looking away when I catch them staring at my son; sometimes I have even seen a slight shake of the head as if saying “aren’t you ashamed to be out with a child like him”; the mum with her two “normal” kids who couldn’t stop turning around and looking at all three of us: you kept smiling and I hope your smile was meant to say “I am happy to see your son enjoying a weekend bus ride in his own special way”.

Many would say that I am lucky because my child is able to understand the basic rules of social behaviour. We can go most anywhere with him without any special challenges. So I cannot begin to empathise with the challenges faced by others whose children have more trouble negotiating social situations. However thick skinned parents of SEN children become we still feel emotionally exhausted some days. If someone were to openly criticise my son for being happy in his own way in a public place I would very ruthlessly cut them down and lecture them on the needs and quirks of autistic children and make sure they think long and hard before ever criticising another SEN family/individual. But sometimes the furtive glances, the curious stares, the slight shakes of the head, all these are worse than punches to the gut. You come home feeling bruised and emotionally drained. You want to ask what is wrong with world where people feel compelled to stare and shame individuals who don’t fit the ‘box’. No wonder so many families feel compelled to seriously restrict their life experiences because of the stress caused by the ignorance of strangers. I wish there was someway to undertake a community outreach and show people that atypical individuals are also human even if they choose to express their emotions in what might be deemed a socially unacceptable manner. I often feel that if I have one calling left in life it is to make ‘normal’ people more aware of special needs and help them stop seeing such families and individuals as oddities. A happy child enjoying a bus ride and expressing his delight in his own way ought to be a moment quietly enjoyed by all who have the chance to share it. All those starers and head shakers, I actually feel sorry for you because you’ve never come in contact with the pure unadulterated joy that a socially uninhibited individual can feel. Autism_Awareness_Ribbon

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