by BrianRobinson
Jul 04, 2011 | 1887 views |  0 comments | 21 21 recommendations | email to a friend | print | permalink

Autism - from the Greek word autos, meaning self.

One of the more isolating facts of autism is the desire and preference to be left alone and do their own thing.  Whether this means only doing one thing on a playground (like swinging), or sitting alone in a corner organizing their blocks, or a rather more forceful refusal to stop something and start something else, it's a simple and evident wish to do their own thing.  It's almost admirable, in its way - a single minded stubbornness of purpose, of knowing what they want and refusing to do anything else, even as it sets them apart from everyone else.  The debatable benefit is not knowing, or perhaps not caring, about how this sets them apart.  I prefer to think it's not knowing.

(I only speak from our experience.  I would guess that families who have members with Asperger's Syndrome would probably argue there's nothing better about what they go through - being more able to blend in 'normal' society also makes the differences more evident and painful to know.  So no insult is meant, nor any attempt to say condition A is better than B.  Every one is their own special balance.)

But their solitude has an effect on their family.  I can count on both hands how often we've left Xan with anyone else outside of school in his nearly ten years.  I can count on one hand how many times he's been to a movie.  I don't need any digits at all to figure how often he's been away from us at night, or been at a friend's house, or been outside without one of us outside as well watching him.  His aloneless has driven us to be separate from others.  Some of it is simple defense - we know the warning signs, the verbal shorthand, what he can eat, what he likes on TV.   Some of it is exhaustion - it's much easier to have a full and frank exchange of views - or, as it seen by others, an argument over what he'll do or how he'll act - when it's behind closed doors.  Some of it is protection - by limiting the contact, we limit the dangers.

In addition to the forced isolation, every family has different issues with their situation.  Xander's diet has expanded a lot - some families have kids who can literally eat one or two things.  Xander can handle going out of the house at the spur of the moment - some kids have to have a minute by minute day mapped out to get through it.  On the other side of the coin, Xan doesn't talk, which is a whole universe of problems.  Taking him to the doctor or the dentist can be a wrestling match.  These issues may be unknown to others, or to a greater or lesser extent.  So even among our little community of families affected by autism, we have all separate stories and problems.

But, to end this on a happier note, we are also alone in our triumphs.  A few weeks ago, Xan spontaneously told mommy "I love you."  We know he does (at least with mommy, who is a clear favorite.  It goes Mommy, cats, teachers, classmates, a couple of stuffed animals and THEN daddy, and that's on a good day).  He shows it a lot - holding out his hand for a kiss, coming up and trying to tickle her, or demanding her attention to play with him - but this was the first time he told her without any cueing or repeating.  That may be too little or too much for some other family, but they can tell of other moments of happiness that we wouldn't know of that made them ecstatic.

Every trouble and triumph is unique in itself.

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