Brinkley is twenty-eight months old and he doesn’t talk or point at objects to indicate interest. He loves to play with string, dental floss, and even spaghetti noodles, wrapping them around his fingers in elaborate, intricate patterns; nothing captivates him so completely. These characteristics—repetitive behavior and lack of communication—are, according to developmental psychologists, two key autism markers. The third primary marker—impaired social interaction—could not fit Brinkley any less. He loves to make eye contact, he laughs and smiles all the time, he’s very friendly when he meets new people, and he’s not the least bit shy or reserved in social situations. So is my son autistic? More importantly, do I give a damn if he is or he isn’t?
What is autism? The fact that Katie and I have read about it and discussed it as much as we have and I still can’t give a definitive answer is, to me, more telling than any answer I could give. As I understand it, there are three major autism markers—impaired communication, repetitive behavior, and impaired social interaction. Brinkley clearly meets the first two requirements and just as clearly does not meet the third. So then he isn’t autistic, right? Not so fast.
It seems now that we have an autism spectrum, and a child can be placed on that spectrum if he or she meets some of the requirements to some degree or another. This is, to my knowledge, a fairly recent development; certainly the extent to which parents are aware of the ‘autism spectrum’ is new. Now you can have a diagnosis for your weird kid no matter what—if you don’t know what else to do, you can place him or her on the ‘spectrum.’
Well, I think that’s a load of crap.
As far as I’m concerned, my kid is weird. He’s weird, but he’s healthy and he’s happy. As my friends and family know, I’m an alcoholic. I’ve been sober for more than four years now, and I bring it up in this context only because this ‘autism spectrum’ brings to mind a maxim I heard when I was in rehab: if it causes problems, it is a problem. I had a lot thrown at me in rehab and not all of it stuck, but that one did. Long-time alcoholics are masters of denial, and one of the most common things we do is create our own criteria for classifying a person as an alcoholic—criteria that we then conveniently fail to meet. For example, I told myself that alcoholics drank all day (many do, of course), and since I didn’t start drinking until after work, I was not an alcoholic. Did I drink too much? Yes. But was I an alcoholic? No, because I didn’t drink in the morning. Driving drunk was another criterion I used: alcoholics drive drunk, I never drove drunk, therefore I wasn’t an alcoholic. I could admit that I drank too much, but not that I was an alcoholic—why did that classification matter so much? It mattered because alcoholism is a disease—at least how I reckon it—whereas drinking too much is simply a bad habit. Habits are quirks that a man can deal with on his own and in his own time; a disease is something else entirely. If I was an alcoholic, it meant that I was sick and that I needed help. It meant coming to terms with the terrible things I’d done to myself and to others, and accepting my weakness and failure. There’s another false criterion for you: alcoholics fail, and I’d never failed, so I wasn’t an alcoholic.
What does this have to do with autism? I’m getting there.
As an inveterate alcoholic I was driven to avoid that definitive diagnosis at all costs. Why? Because if I accepted the diagnosis, there would be no question of what I had to do: stop drinking immediately and get help to do it. The ambivalence and uncertainty I’d used to avoid taking responsibility would be stripped away, and there’d be no more hedging or equivocating. That stark certainty was scary as hell, and I didn’t face it until my family forced me to. But what if the tables were turned? What if the uncertainty was what frightened me? In my case, there was no uncertainty. My mind, my body, my family—it was all coming apart. Soon I would be alone, and soon after that I would be dead, and I knew why. I knew exactly what my problem was. More importantly, I knew that I had a problem. Only the disease allowed me to repress, deny, and project. But what if I didn’t know? What if I wasn’t sure?
Brinkley isn’t doing everything his sisters did when they were his age, and he’s doing some things they didn’t do, mostly weird things. But they were day care kids; he’s stuck here with me. They’re girls; he’s a boy. They’re two-and-a-half years apart; Brinkley is seven years younger than his closest sister. Moreover, I’m in a position to notice things now that I might have missed before, back when I worked for the bank every day and drank every night. My gut feeling is that my son is fine—peculiar and obstinate, but fine. I trust my instincts as a parent, but I can imagine what I might do if I didn’t. If I didn’t know that my son was going to grow up to be happy and healthy—and let’s face it, no doctor can promise me that about any of my children—and I didn’t trust my own character and judgment as a father, would a diagnosis of autism make me feel worse, or would it be a relief? It would be a challenge, of course, but the next steps would be clear: behavioral therapy, psychological evaluation, possibly some medication or another. More importantly, I wouldn’t have to figure it out on my own, because the doctors would guide me.
What I’m hinting at is uncomfortable to suggest, but here it is: I suspect that the autism spectrum has, in some instances, been extended and improperly applied to children because their parents can’t handle having a weird kid that doesn’t act like every other kid. Parental micro-management relying on cookie-cutter developmental milestones and unsubstantiated Facebook boasts (‘my eight-month-old is fluent in three languages!’) is a fast track to madness. Worse still, it can make you overreact to developmental lags that would otherwise correct themselves, inviting the medical community to slap a label on your child for no reason other than that you can’t be happy if your kid doesn’t hit the proscribed milestones when your friends’ kids do. If my son is happy doing things his way, but I’m bent out of shape about his way of doing things, is he really the one with the problem?
That brings me back to the rehab maxim: if it causes problems, it is a problem. What the counselors there said was that it doesn’t matter what name you give it, if alcohol is destroying your life, it’s a problem. You can’t hide behind semantic distinctions and arbitrary criteria: you’re miserable, everyone you care about is miserable, and alcohol is the cause of that misery. You only need the one criterion: if it causes problems, it is a problem. Well, the inverse is true as well: if it’s not causing problems, it’s not a problem. If Brinkley is autistic, the disease will disrupt and degrade his life and mine to the point that I won’t need a doctor to tell me things are very, very wrong. If you have to ask a doctor if there’s a problem—not what the problem is, but whether there is a problem at all—with an otherwise healthy and happy child, the child may not be the one with the problem.
None of what I’ve said should be interpreted to mean that I don’t believe that autism is a real disease—of course it is. It is a disease, but it’s slowly becoming a catch-all diagnosis for weird kids. I don’t want my kids to be like everyone else—everyone else is already like everyone else. In a world like that, a little weirdness can take Brinkley a long way.