Blog Entry #4

My son’s behaviors are so different from typical people that I know his brain works totally differently from mine.  He hears the house fan start up in the ventilation system that I only hear when he says aloud, I hear the fan, or ‘das is the Klimaanlage’ (That’s German for ‘that is the air conditioner’.  We had German Au Pairs years ago.).  He hears helicopters, trains and planes long before I do, and runs out the door to see them.  Although he can’t name the notes on a keyboard he can tell me without looking whether I am playing a black key or a white key.  He hears the click of the door latch from my bedroom when he is downstairs and I hear, “Hi Mama” or “Hi Dad” in his sweet little voice.

Despite this acute hearing, he has difficulty understanding speech, especially anything abstract or related to social reactions.  If I use too many words or the idea is too complex he is lost.  I get the sense that his inner world is louder to him than our outer world, and when it gets too hard to join with us he just slips into his own little world, or laughs and smiles in his confusion.  Some might think that he understands, like we used to, but we have learned. 

If I keep talking trying to explain I can hear his voice changing and his repeated phrases emerging as he gets agitated.  I understand now that his repeating phrases from long ago are a way of calming himself.  If I don’t let him come back down I can push him into agitation or overload.  I can only guess from the outside what is going on inside him.

What experience for those of us without autism comes closest to overload or meltdown?   

Have you ever had stage fright? 

Can you talk?  Can you walk?  Do you start shaking or get weak kneed?  Do you faint or nearly faint?  These are typical feelings of people without autism who simply get up in front of a crowd.   Would someone yelling at you help you?  Could you even make sense of what someone is saying to you?  How much control do you have of your body at that point?   What is best for you at that moment?

Who really understands this?  The fact that those of us who don’t have autism experience this loss of control from just getting up in front of a crowd illustrates how much of these reactions are wired into us and kick in without our permission, and even against our will.

One of the weaknesses in autism is the ability to recognize how we are feeling and to be able to do anything to confirm or tone it down.  Some few with autism get pretty good at it but most never have even step one, which is awareness of oneself much less the skill involved to control their reaction to stress.  They are particularly vulnerable in public, and the press is rife with scenarios where encounters with law enforcement or others have gone off the rails.

Matt will likely never understand that someone aiming a gun at him is a danger.  He is not able to follow orders to hold still, even for a haircut.  When he is anxious, forget it.  He will ultimately run.

We hold our breaths every time we go through airport security.    Will we be pulled out and searched?  Will we be separated from Matt? 

We have been fortunate over the years as many people now have a friend or loved one with autism and they have been very supportive.

I thank all of those people who have put up with us and have helped us with as little as a kind smile as we attempt these socially risky activities.  The little smiles are really huge gifts and coming from strangers makes them mean even more.