My Universe


My older brother Michael is autistic, low functioning and nonverbal. By ‘low functioning’ I mean, he was diagnosed as ‘profoundly retarded’. They doctors gave him that diagnosis by determining that his IQ is 18. How they came up with ‘18’ is a mystery to me, but that is another story.

autistic sibling in parkI picture autistic aloneness as utterly loneliness: being the only one in the universe. However a commenter (navery101) from my friend Rohan’s blog (aka Big Ganga in the blogosphere) mentioned that ‘loneliness evolves into solitude’ and quoted Thoreau: “I have never met a companion that was so companionable as solitude.” This gave me great comfort.

I don’t know how a profoundly retarded individual thinks, or if that concept even applies, but I tried to put myself in my brother’s place under these circumstances.

Universe of one

Imagine being the only one in your universe. Imagine that you never knew anything different than this. What would that be like?

Mike at table with hands in ears as if listening

Everything in your environment is an extension of you. You are the only one that is conscious of your surroundings in your universe. There are no other conscious entities, how could there be? There are surprises, however. Some of the objects that look a little bit like you are unpredictable. Sometimes these objects are in your way as you walk. Sometimes, one of them extends an appendage and touches you. It is uncomfortable to be touched or held by something in your universe. You didn’t make them touch you, how could they have touched you without your willing it to happen? It doesn’t make sense.

What does make sense in your universe? The good feeling you get when you arrange the small, unmoving items in a row; the delightful feeling when you spin or hold your hand in just the right position next to your ear. Predictable things make sense.

At certain times of the day an object-that-looks-like-you and moves by itself stops in front of you and makes a series of sounds. It doesn’t make any sense, so you try to get away. But the object steers you to a room. After more sounds from the object that steered you there, you sit. Your arms rest on a platform in front of you. Other objects-that-look-like-you bring things you can put in your mouth and swallow. You eat. The objects-that-look-like-you make you eat in a certain way.

Not inside

Later, you remember seeing this large rectangular shape in the wall. Sometimes one of the moving objects-that-look-like-you, stands in front of it, extends an appendage, does something to a knobby looking thing in the middle, on one side of the rectangular shape, and part of the wall moves away to reveal a space that is not inside the house. You remember that walking in the space that is not inside the house makes you feel good. You want to be not-inside and you go to that part of the wall and reach for that knobby thing with your hand. Nothing happens. You look for one of those objects-that-look-like-you. You take the appendage of that object and bring it to the thing that would make the wall reveal the space that is not inside. The object makes some sounds and pulls the appendage away. You are steered to some other place.

Mike with feet up on couchAll this was very confusing to you when you first arrived. Now you recognize some of the objects-that-looks-like-you. You remember some of the sounds they make and you know that one pattern of sounds means something will happen next.

You are not unhappy in your universe most of the time. You know the patterns. Now and then something you don’t like happens and you are frustrated. You make sounds yourself and bite your hand or slap your head to make the frustrated feeling go away. For the most part, your solitude is perfect.


Given this scenario, loneliness is not a concept. How could it be, when there is no conception of other entities? When something expected should happen but doesn’t, perhaps the feelings stirred up are akin to loneliness. Perhaps the anticipation of something that feels good is the analog for love.

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