Willy slept on the soft, comfy couch in front of the television. This couch is “new to us” and still smells faintly of the last owner’s dog. But the cushions are soft, like a big warm hug. Willy likes to be part of the action, even when he’s sick, so he took up roost on the couch for his recovery. Alex was very active, but just sick enough not to go to school and further spread this illness that’s raging through Janesville. Willy is Alex’s primary playmate, so to Alex this whole “being sick” thing was boring, to say the least.
Alex has a peculiar sense of routine that parallels, but doesn’t follow the literature I’ve read regarding standardized routines for children with autism. If I devise a schedule for our day, he won’t follow it. He certainly doesn’t derive any comfort from it. But, at the same time, certain things are expected. And in these things Alex can be very rigid. For example, it took me six months of low-pressure modification to get Alex to accept that the same foot doesn’t have to be first when putting his shoes on each and every time. Now, he’ll hand me whichever foot is closest first; whereas before, if I put the wrong shoe on first, he’d take it off until the other was on.
One of Alex’s daily expectations is the merry dance between activities he and Willy shares. They are both active little boys who are often like ships passing in the night—they do not directly engage (as part of this routine), but their play parallels each other in a way that Alex expects and enjoys. With Willy lying on the couch, this expectation was undone.
Alex also engages with Willy directly at intervals throughout the day. His usual ways of engaging with others tends to be a bit invasive. Alex will get right up in someone’s face and put his hands on their mouth or grab at their arms to keep that a very direct form of contact for several minutes at a time. He engages with Willy in this manner throughout the day. Willy tolerates this behavior most of the time—except when it interferes with playing his game or watching television. But when Willy was sick with the flu, he had very little tolerance for Alex’s direct engagement strategies and wasn’t up and playing around.
Alex, in turn, couldn’t tolerate this change in his routine. He tried many things to make Willy behave normally. He grabbed his face. He tried to pull him up. He bounced on him. He laid on him. He grabbed and pinched his arms. And he hollered at him in a loud, squeaky tone that seemed to imitate the squirrels that like to sit on our fence and scold the stray cats as they pass through our yard.
We intervened as best we could and tried to explain to Alex that Willy was sick and needed his rest. Alex wasn’t buying it. He persistently and insistently tried to force Willy to behave normally.
While Alex’s expectations were developed over time, each time a child is born that child is born into expectations. These expectations vary depending on the individual sources of these expectations. Yet it is seemingly universal that a child born will face some set of expectations, and it is relatively rare for a child to meet them all. Some goals that are set may be reached, but others are aborted as the child asserts a will of his or her own. Parents are full of such expectations and each parent reacts to the child’s failure to live up to expectations differently.
This pattern of expectations, actions, and reactions can be observed with every child I’ve ever known. A child can be neurotypical or neurologically diverse, able-bodied or physically disabled, intelligent or less intelligent, or have any other trait imaginable. The child will be faced with unreasonable expectations, born of a parent’s desire for the child to reflect something about the parent. The parent will, in turn, discover that the child has a will and a personhood separate from the parent. Often, this behavior and these discoveries happen on a level below conscious thought. Most of us are not so self-aware that we see our behavior in these terms. Yet, it happens. Again and again, it happens.
Like Alex, the people in our lives have expectations. Like Willy, we are not always willing or able to live up to them. Like Alex, many of us try to do something to ensure our expectations are met. Like my husband and I, observers can often see how unreasonable and counterproductive these actions are.
In reading the works of autistic adults, sometimes I get the impression that this form of parental mistreatment and abuse happens especially or even only to people with neurological differences. This is not true. One thing that sets neurologically divergent people apart is how this sort of behavior is institutionalized and condoned in our culture and in many other cultures.
Societies, too, have expectations for their members. People who are significantly different—whether those differences are mental, emotional, psychological, or physical—face a great deal of pressure to conform to those expectations. Parents who reinforce those expectations are encouraged; those of us who try to change and adjust those expectations to a set that is more inclusive and less judgmental are discouraged.
Like the behaviors Alex chose to inflict on his sick brother, our attempts to force others to meet our expectations are fundamentally flawed. They are also natural and widespread. From the parent who tries to force their child to pursue a career-track the child either dislikes or is unsuited for, to the parent who tries to force their child to behave “normally,” from the government that tries to force its citizens into other-defined habits, to the government that tries to force all its children to learn in a standardized manner, there is the assumption that our expectations are right and that we have a right to enforce them. The harm is real and it, too, is widespread. But like Alex, our behaviors are often persistent and insistent and so many of us consistently fail to understand the harm we do. Sadly, this thing we all have in common is a thing which hurts us all.
