What You See and Don't See When You Look at a Child on the Autism Spectrum

You don’t see the child who desperately wants to be compliant and “good” but struggles to keep it in all day, then explodes at home in her comfort zone with those she trusts the most.

You don’t see the anxiety that stays like a knot inside, as the world and other people can be unpredictable, which leads to an overwhelming need to be in control of the world and those around her.

You don’t see how that very same anxiety, when built up enough, leads to the inability to face going to school or participate in much-loved activities until the “knot” has melted away enough to move on with daily life.

You don’t see that the child who is refusing to speak or engage with anyone or maintain eye contact, who may seem rude, ignorant, or antisocial, could actually be in shutdown and struggling to deal with surroundings. He may be desperate to join in but unable to due to his sensory overload or anxiety.

You don’t see the absolute need to know what is coming next to avoid the unexpected and the worry that comes with it.

You don’t see the strict and complicated routines that accompany things as simple as getting in and out of the bath, going to bed, leaving the house and meeting dogs in the street. Every. Single. Time.

You don’t see the exhausting, continuous warnings and countdowns given numerous times through the day to get through to the next part of the day without meltdown.

You don’t see the child who finds it more comfortable to sleep on the floor or with no clothes on than in a comfy warm bed.

You don’t see the child who wears the same things every day for comfort yet has a wardrobe full of lovely clothes to choose from but who can’t throw out of any of those clothes as they mean too much.

You don’t see how the “fussy eater” is actually a child who finds certain textures and smells very difficult to manage… or the years spent trying to increase the “acceptable foods.” It’s not as simple as forcing that child to eat what is in front of him.

You don’t see the child who worries about and thinks about death excessively but keeps it to herself for fear of it coming true.

You don’t see the obsessive resistance to simple everyday demands, like being asked to eat food, start a new activity or get dressed, the inability to “just do” what has been asked, without causing a fuss or delaying as much as possible due to anxiety.

You don’t see the objects that absolutely have to be collected, carried, displayed and kept, to feel at ease and comforted by the familiar and calmed by the order. You don’t see the inability to throw anything away, no matter how insignificant it seems to you, even empty packets and what you may call “rubbish.”

You don’t see the all encompassing intensity of the interests and obsessions and the need to share it with anyone willing to listen.

You don’t see the confusion or distress as to why a person may have behaved or reacted in an unexpected way.

You don’t see the rigidity of thought and inability to stray far from that expectation or pattern without invoking panic or anger as a result.

You don’t see how the child having a “tantrum” is actually overwhelmed, or upset because something doesn’t make sense, has changed without warning, or is out of order. Sometimes the demands have just become too much to process. You don’t see that the parent trying to deal with it, doesn’t need your stares, comments or judgment to make her feel any worse than she already does. This is a meltdown, not a tantrum. It isn’t about getting her own way – though it can sometimes be about controlling her environment to alleviate the anxiety inside.

You don’t see the build up of fear, anxiety and helplessness as a meltdown is triggered, building like a wave, unable to be stopped. You don’t see it come crashing down catastrophically, unpredictably, sometimes lasting for hours. The need for space, calm, unending patience and understanding but displaying itself in kicks, punches, scratches and lashing out verbally, anything to end the feelings of confusion before it finally ebbs away.

You don’t see the self-hate, recrimination and regret that comes after that meltdown, the desperate wish to take back the words and actions that were totally beyond any rational control.

You don’t see the tears, the frustration, feeling “different,” “weird,” “abnormal,” and “inadequate,” when actually he is a kind, loving and unique and exceptionally clever in so many ways.

So what do you see?

You see a happy, confident and chatty child. You’re seeing the need to be accepted and liked and to fit in, a child who is clever enough to have learned the “social norms.”

You see a child who enjoys drama and pretending – who is good at taking direction and acting the part. You’re seeing the child who finds it easier to deal with scripted interactions and conversations.

You see a “normal” child who has her moments – like all children – but is generally well behaved. You’re seeing a child who saves his worst times for the safety of home and those who understand him and won’t judge.

You see a polite child who can converse well with adults. You’re seeing a child who finds interactions with adults less unpredictable and confusing than with peers.

You see a tiny snapshot of time where she can hold herself together long enough to pass as “neurotypical” – like you may be.

You see what you want to see. You see the mask.

A version of this post first appeared on Steph’s Two Girls.

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