Navigating a Neuro-Diverse Vocabulary

Our journey with our 20-year-old neuro diverse young adult has been to enable him to live independently. An important part of that exercise has been to decode his binary way of thinking.   

Should we let him/her go out into the world on his own or should we protect him? This is a dilemma all parents of neuro-diverse individuals go through. We chose the former, and not surprisingly there has been a fair share of hits and misses during this journey of making our 20-year-old independent. Do the hits outweigh the misses? Certainly! He travels to college in a taxi (black-and-yellow cab) on his own, buys himself an ice-cream at the nearby store and has even learnt to get a photocopy done in college and pay for it. These may sound matter-of-fact acts for us neurotypicals, but it is like moving a mountain for a neuro-diverse individual who finds it challenging to interact with people.

Our son's attempt to lead a so-called ‘normal life’ may sound impressive but he often gets into trouble. The triggers for the same are bizarre. I once got a call from a cab driver (who managed to get my number from my son) saying that my boy misbehaved with him. I promptly apologized, told him he was different and requested him to drop him home. The cab guy obliged. When I asked my boy the reason for misbehaving, his answer was, “the cab driver addressed me as ‘Dada’ and I am not a grandfather!” The rest of the evening was spent in making him understand that ‘Dada’ in Marathi means ‘Bro’ and there is nothing wrong if someone addressed him as ‘Dada’. There have been a few more incidents when some phrases used by people didn’t go well with him. For instance, the word ‘pagal’ is loosely used by many of us. We often affectionately address our peers as 'pagal'. The neuro-diverse hate the phrase. They feel they are being discriminated. My son is even averse to the phrase ‘Don’t Worry’. He thinks he is being treated differently. “Why does everyone tell me not to worry,” he often asks me.

He hates it when someone tells him about his face or his looks. The day my father passed, a family member to lighten the mood told my son that his hair looked good. My son came charging to me and asked, “Why is he complimenting me when there is a tragedy at home?” We knew my father’s end was coming and we had prepared our son for it. The person who complimented wanted to ease the situation. He obviously had no bad intention.

When I asked my son why he didn’t like any mention of his looks, his answer was, “It makes anxious.” He often doesn’t like being complimented as that strangely makes him feel discriminated.

Though we do try to tell people to refrain from using these phrases, its impossible to tell everyone. Miss ‘P’, our son’s special educator has asked him to squeeze a stress ball every time he gets into a situation like this. It mostly works. We also constantly talk to him and tell him that these phrases are not abusive and he has to learn to cope with it. He is trying to cope, but there are times when situations go out of control.

When the relative complimented him on the day my father passed, our son made yet another point. “Nobody complimented you, Dad or my older brother, why did they compliment me? I don’t feel comfortable.”     

Our son wants to be live life like a neurotypical and in the bargain ends up doing unwanted actions. As parents all that we can do is talk to him. The easiest way to deal with this is not allow him to face the world. But exposing him to the world has made him confident. We make sure we calibrate the exposure. We don’t let him travel by local trains, he instead takes the black and yellow cab. We prefer Uber as that helps us to track him. Each time he steps out on his own, he shares his location details. We encourage him to interact only with people who understand him.

If there is a flight travel in the offing, he is prepared what to expect. We allow him to sit at a safe distance from us so that he has the pleasure of sitting independently and we can keep a watch on him. But the unexpected always occurs. During a recent flight to Istanbul, the steward didn’t understand him, but he understood our older son. The former obviously threw a fit. The next few hours went in making him understand that the steward was from a different nationality and hence couldn’t comprehend. We told him ways to deal with situations like this and the return journey was incident free!

Its not easy, but my two cents to parents of neuro-diverse children and young adults would be to enable them to face the world.    

(The writer is Editor-At-Large, Fortune India)