Susan Senator

What must it be like to so frequently be told what to do and how to do it? It’s one thing when you’re a child and everyone around you is pretty much older and wiser. But when you’re a 23 year old man? This is one of my biggest areas of concern for Nat, a grown up with intense autism. For him basically to survive, and enjoy life, he needs a lot of supervision, adjusting, and fine-tuning.

If the higher-functioning autistics and Aspies are right, I am to presume competence. I am to treat Nat as if he knows in many ways what is going on, what is being said. I am to act as if he understands me for the most part, but just that something gets lost in the processing or responding on his end. I also have been saying this for a long time. But there’s a part of me that feels a little twinge of doubt, that Kompetence Kool-Aid. I look at how my younger son Ben, who is fifteen, responds to Nat. He still gets frustrated by all the ways in which Nat has to be reminded how to behave. Even as a little boy Ben used to “herd” Nat (eight years older than him) when Nat walked too fast, too far away from the rest of us. Nat still walks too close to strangers on the sidewalk and needs to be pulled back every so often with a sharp, “Nat, slow down.” It is very stressful  going out to eat with Nat and Ben because I know that Nat is going to chew with his mouth open, touch his food with his fingers, and talk constantly, in a regular tone, but to himself. Every so often I will catch Ben’s withering look towards Nat and I will then try to fix everything. I will put my hand softly on Nat’s back to get his attention, and murmur, “try to be calmer, Nat,” or “a little quieter, Darling.” Nat hears me and does it for a little while but eventually slides back to his natural state of being.  And Ben goes back to smouldering. I talk to him about compassion, of course…

Last night, after gently suggesting that he tell Nat himself, Ben said, “I did.” Clearly he was still frustrated and probably had so many other complicated emotions. What must it feel like to Ben, the little brother, to have a relationship with his oldest brother that is virtually impossible to see or feel? What kind of pain remains in his heart, from birth, never healed, to know that there’s a whole person, a whole fifth of his family, that he is never going to be able to talk to, hang out with?  When, how do you accept such a thing? Even I, Nat’s mother, accept this fact in many ways but there are still times when I long to know what he would be like without autism. To have a life with less struggle (in that regard), and the chance not to be constantly titrated, pushed, pulled, or remonstrated by others.

My husband Ned has no problem simply saying, “Nat, come on!” meaning, lower your voice. Ned is his parent, and that is that. This unabashed way of directing him sometimes makes me hurt for Nat, however. Would Ned talk that way to Max, our 21-year-old son? Maybe, if Max were being disrespectful or irritating. But when has that happened last? By 21 or 23 so many young adults have developed subtlety and poise, and their grown-up personae. There is very little room between that adult mask and their child faces.

But as much as I cringe when Ned is so directly parental with Nat — the way I would treat a much much younger child of mine — I also wish for Ned’s confidence that this is just fine. He’s Nat’s father, he will always be. Isn’t a parent always allowed to be parental, i.e., teaching, demonstrating, imbuing wisdom? Is it truly okay to Presume Competence when in fact that person is not competent in some very key, life-or-death ways?

No, not really. Ned is completely within his rights as Nat’s dad to tell him what to do. But my question still remains, how does it feel for grown-up Nat, when the rest of the world does it to him, as well?  For his own protection?

But — here’s the conundrum: if Nat is aware that he is not competent in a particular social setting, and thus does not mind others telling him what to do differently, then isn’t he, in fact competent, at least in a self-knowledge sense?

And so being aware of his difference, his position in society of being constantly correctable — how does that feel for him?  Does it make him sad, or is he used to it? Does he just think to himself, on some level, “yeah, fine, this is me.” Or does he live with an eternal underlying pain that this is how it is and no matter what he does he cannot get people to stop telling him what to do?