Sitting on a crowded commuter train, looking at a recent photo of Ben as he reaches for the camera, all of a sudden I am seriously struggling to hold back tears. That sweet and handsome face that expresses his even sweeter personality forces me into a mental place I try to avoid -- thoughts of what a great life Ben could have had. I lose the struggle. My face is wet.
In many big ways, Ben is doing great, and we naturally and ecstatically embrace all of the good stuff. But really, he's doing well only in a relative sense. Ben's had a huge advantage in having a true supermom (like so many moms to autism), to the point where it became her career, working as assistant to a special needs attorney. Because of Karen, Ben has been surrounded by good-to-great professionals, semi-professionals and interested parties since autism started strangling him before he turned 2, more than 20 years ago. Humpty Dumpty never had a supermom. Prying the disorder's vice-grip from Ben's throat has been a perpetual struggle and one that we expect will never end.
Beyond that, as much as everyone in his life cares about him -- and he's lucky to have such a cute, lovable personality that many people who work with him truly love the guy -- Ben lives with obsessive compulsive disorder, not an unusual comorbidity with autism (around a third of autism diagnoses come with a side dish of OCD), with the accompanying intense anxiety. If Ben is upright, he's probably pacing, in part to burn off some tension. When he occasionally acts out aggressively, he's not being a jerk, he's just frightened, and unable to express or handle it.
Now imagine all the things Ben will never experience.
Ben is 22 years old, physically normal and healthy, and active as heck -- he could walk for hours at a pace that requires you to practically jog with him. And if he lives to be 100, barring a miracle, Ben (and please pardon my crudity) will likely never get laid. It's estimated that only 10 percent of adults with autism spectrum disorder have had a sexual relationship. I don't think I'm alone in feeling like that is a very big loss, not even considering the emotional pieces of sex and love and companionship. Just the sex. That's enough to contemplate.
You might be thinking, oh, someone like him is clueless, doesn't really get it, or he doesn't need that, or doesn't have the same urges. Wrong, plain and simple. Most of us simply don't want to "go there" when we think about adults with severe disabilities. Autism usually means that, no matter what developmental delays are going on, it's uneven. Ben, sexually, is a fully developed young stud. His physiological reactions have indicated to us in no uncertain terms that he is hetero. And while he's never done anything "inappropriate" with someone, and no, I don't think he'd really know what to do in a mechanical sense (just like many other virgins), it doesn't mean things don't stir and swirl inside of him. Powerfully.
So add sex into the stew of all that Ben will miss, just to pick something universal that most of us would miss even if we never experienced it. Not knowing what you're missing can go a long way with Ben for some things, and because of his condition, many of the things he is missing he has zero clue about or could care less either way. Sex, however, comes with an internal drive that makes you know you're missing something, even if you don't "know" what it is. For Ben once again, autism has no upside.