This week I am feeling a little sober and wee bit maudlin, so I will apologize in advance. But for people who do not have direct experience with autistic individuals, I fear that the media has given a skewed picture over the years. If your image of autism is Dustin Hoffman from Rain Man, or any of the other multitude of idiot-savant characters who have appeared in film and television, you may not understand. Perhaps you actually do understand, but you might have the impression that Benjamin is doing very well because of how I have written about him over the years. I try to focus on the positive, and there has been plenty to be positive about to be sure, but then there is the harsh day-to-day reality. Here is a typical 43 seconds from a day in the life with Benjamin. Take a look, and I will catch you on the flip-side.

That's my boy. And a very happy boy he is, joyfully watching a favorite scene from Rescuers Down Under. Well, not so much a scene as a clip. Over and over again, the same few seconds, rewind-play-laugh-rewind, lather, rinse repeat. Left to his own devices he will do this for hours on end without ever being bored. If it is not this, it is watching similar clips on YouTube (combined with taking still photographs of freeze-frames from the clips -- his iPod currently has 2,493 pictures he  has taken like this,). If he isn't directed to do other things, this is his default state.

This is a nineteen year old man. When I was his age I had already completed both Basic Training and Advanced Individual Training in the Army, and was fully qualified to repair and maintain turbine engines on military helicopters. My nephew is six months younger than Ben, and is already an accomplished musician and well on his way to leading a fulfilling and self-sustaining life. My adult son is watching the same three seconds of a Disney video tape over and over again.

All around the country, college freshmen are getting ready to run away to Spring Break. Perhaps a week of debauchery in Fort Lauderdale, getting drunk and making stupid decisions while they take their first fumbling steps into adulthood and all the complexities that implies. These are Benjamin's peers, discovering relationships and learning how to do their own laundry because mom is not around anymore to do it for them. Staring down the double barrels of a stalled economy with very few jobs to be had, and worried about how they will survive in this strange adult world. Meanwhile, Benjamin's only worry is whether or not I understand that he wants to go to JoAnn Fabrics to buy a bag of blue plastic beads. 

In so many respects he is like a toddler, barely out of diapers and seeming to live entirely in the moment. And yet that is not quite true, either. I know that Benjamin leads a very rich and complex inner life, with dreams and aspirations, and with fears and worries. He moves back and forth between his mother's household and mine, and he anticipates those changes constantly. During the week he will ask his mother frequently for reassurances that he will see Dad on Friday after school. On the weekend he will come to me for reassurances that he will see Mama on Sunday evening. Some weekends he wants to go "take a tram" and visit with Tinkerbell, Alice, and Ariel. On others he wants to go swimming. Occasionally he will pull something random out of his hat, seemingly from nowhere, and will ask to do something that he hasn't done in months (or even years). A while back he specifically dredged up a photograph from the Disney store located inside the terminal at Orlando International Airport, a place he had not been since 2003, and specifically asked to go there. He was not satisfied until I drove him to the airport, parked, and brought him inside the terminal. I was genuinely afraid that what he really wanted was to get on an airplane and fly to Seattle.

Sometimes he gets sad and weepy, for no apparent reason. When that happens, he has no language to express his melancholy and no functional way to seek reassurance for whatever is troubling him. It is  heartbreaking to see, and although it eventually passes I am always left feeling small and inadequate.

And yet at other times he is so very mature and professional. At school he is usually the last student to leave after-care at the end of the day, and he has fallen into a routine of walking the entire school campus with the principal and checking each door to make sure it is locked and closed properly. He understands this job, and is able to perform it accurately and consistently with little or no prompting. He clearly takes satisfaction in a job well done and performed independently.

This is the face of autism. Profoundly disabled, at turns both childish and mature, gleeful and morose, and always so much more than just the sum of his autistic behaviors. I look at him and I see a young man who has come so very far from where he was a decade ago, and at the same time I see a small child who will almost certainly need full-time care until the day he dies. My heart bursts with joy to see him so happy and contented, and my heart breaks to see him forever trapped inside a brain that refuses to properly build neural connections. I try to be relentlessly positive, to match Ben's giddiness as he watches a favorite moment from his cartoons, and yet I also find myself in these morose moments wondering if this will still be Benjamin at 29, 39, 49 ... forever trapped as a child while I grow old and infirm.

Please don't get me wrong. I honestly could not ask for a better life. I have a wife who loves me and whom I adore; I have a son who brings me endless joy in spite of the challenges; I have a job that is both fulfilling and profitable. I really couldn't ask for more. And yet, I want so much more for Benjamin, and it kills me that he will probably never have it.

And that is the face of autism.