Control in autism: Part One - The need for control

Control is a big issue in autism. It is so big, that I will say that the need for control is central to the condition of autism itself.

In posting on the subject of control in autism, I have three main goals. The first is to educate parents on how and why their child with autism controls. The second is to make parents aware of their own role in their child's need for control. The third is to give parents ideas of how to help their child overcome his or her need for control through altering the parent-child relationship dynamic.

Control in autism often relates to the way persons with autism interact with the social world. For example, persons with autism may have an insistence on their own "agenda" and a corresponding resistence to adapting to the agendas or schedules of others; may use others (in particular parents) as "tools" to meet their own needs; and/or may restrict or manipulate conversation topics to their own obsessive areas of interest.

But not all persons with autism display these obvious methods of control. For some persons with autism, control comes in the form of social isolation or indifference, manipulating objects in the physical environment, and/or moving or manipulating their physical body (or some aspect of it, such as voice) in ways that provide them with a greater sense of control.

Why the great need for control in autism? To examine this question, it is worth reviewing the research behind the need for control in typical human beings, then applying what we know about the neurology of autism and the dynamics of relationships.

All people have a deep need for a sense of control. When we don't feel "in control" we experience a feeling of tension from the discord between what we perceive as our equilibrium state and the evidence we have that we are "out" of our equilibrium state. Changingminds.org contains an excellent piece on the need for control in humans. The piece breaks down our need for control into the following components:

-An evolutionary need; being in control of our environment would more likely result in our survival (This need is related to our biochemical "fight or flight" response when we perceive a threat to our safety)
-A sense of certainty
-Completion of outstanding things, so we don't have to worry about them.
-Being able to predict what will happen
-That people (including ourselves) and things are consistent

I want to focus on two items in the above list: "A sense of certainty" and "That people and things are consistent." Having "a sense of certainty" requires that we be able to make sense of the world. We must be able to take in, assess, synthesize, organize, categorize, prioritize, and draw conclusions about every "input" that we experience - physically, through the senses, and mentally. In order to have a sense "That people and things are consistent" we must have an ability recognize patterns in the world around us amid constant variation, understand "sameness" within differences.

If we cannot make sense of the inputs to our nervous systems, if we cannot organize and structure information about our world in a meaningful, cohesive way, if we can't recognize the central patterns within our ever-changing environment, we are left with overwhelming feelings of "uncertainty." Such is the experience of autism.

Neurologically, what causes these deficits in autism? The research literature is converging on an understanding of autism as a disorder of information processing. Twenty years ago, Nancy Minshew and her colleagues at the University of Pittsburg first proposed the "underconnectivity" hypothesis of autism. This hypothesis continues to be supported in more current studies, so much so that it is now one of the accepted central theories of autism. The hypothesis proposes that autism is a disorder of higher level information processing characterized by insufficient long-range neural connectivity between and among major brain centers and an overabundance of "local" neural connectivity within brain centers. The lack of sufficient connectivity between different brain centers is related to the difficulties we see in persons with autism making sense of their world.

In order to synthesize, categorize, organize, and prioritize information from the environment, brain centers with different purposes must work together. For example, the prefrontal cortex and the limbic systems must work together in order to process information from the physical environment in an emotionally meaningful way. If these two areas do not work together properly, physical or sensory information could be interpreted in bizarre, confusing or threatening ways. One would have a difficult time drawing from past experience to help make sense of our current experience. One would be left with a sense of "uncertainty." One would feel a great need to extert some type of control, to relieve the tension due to this perception of uncertainty.

Uncertainty, like autism itself, can be conceptualized in a "spectrum" way. One's perceived level of uncertainty can be high, low, or in-between. If the level of uncertainty is (too) high, the situation is perceived as threatening. If, on the other hand, the level of uncertainty is (too) low, one might feel, bored, unmotivated, "in a rut". There is too much "certainty." If the level of uncertainty is at the "right" level, the situation is perceived as exciting, interesting. The uncertainty then is "productive." We all need a balance between "certainty" and "productive uncertainty" in our lives. At times we also must cope with and appropriately resolve "unproductive" uncertainty. But autism renders persons in states of "unproductive uncertainty" quite often. For persons with autism, the frequent perception of threat from the environment results in tension, anxiety and a need for control.

In Part Two, I will discuss the parent's and caregiver's role in the need for control in autism.