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.

Bullying

Today I read an article on bullying that, judging by the comments under the article, upset some people. The article implied that individuals who are bullied sometimes bear part of the blame for being bullied. Many of the commenters felt that this perspective was unfair, they felt that bullied children are innocent victims and the fault lies with the bullier.

Children with autism are often at the receiving end of bullying. I have heard that the more severely affected children are left alone; it is the "higher functioning" children who suffer most. Well-meaning parents and professionals work hard to minimize bullying of children with autism, educating other children and staff about the disorder, counseling children about inclusion and acceptance of differences, emphasizing kindness. So far, so good. But what's the missing link here? The bullied child himself.

Allow me to share my perspective on this topic as it relates to autism. My son is one of those individuals on the "higher end" of the spectrum. He has been bullied. He also has been a bully. He would not consider it bullying. He would consider it "making people do what they are supposed to be doing to follow the rules." Controlling. Annoying. Bossing. I could excuse his bullying because of his disorder. But I don't believe there is any excuse for bullying, period. Autism nonwithstanding.

Relationships and social interactions are dynamic. Do something that I perceive as annoying, even slightly, and that changes the way I treat you. If I even observe you treating others in a way I perceive as annoying, bullying, controlling, etc., that changes the social dynamic between us. Our perception is our reality.

We had an incident in school in which my son came home and told me some boys had bullied him in school. From his story, he was standing innocently in the lunch line when a boy in front of him told him he was going to stick his head down the toilet. I asked him if he thought he had done anything to provoke the boy and my son said "no." I contacted the school and had the social worker talk to all the boys, on the assumption that my son's behavior also had played a part in the incident, while not by any means excusing the behavior of the other boy. Sure enough, when my son came home from school after the meeting with the social worker, he now remembered that he had been bossing some kids in line right before the boy's comment. The boy had reacted out of frustration at my son's bossing of the other kids. It was not clear whether my son has been less-than-truthful with me before, or whether he had honestly forgotten his part in the incident. At any rate, all parties apologized to each other, and hopefully we can put that one behind us.

My role after that incident was to help my son slowly understand his role in the relationship dynamics that sometimes end up in bullying. We did talk about it, and the conversation ended by him saying "I think I need some lessons in how not to be controlling of people." Yeah, Matt. Great idea!

Welcome to my blog!

I have been thinking about blogging for a long time, and now I have finally gone and taken the plunge! I don't consider myself a great writer, but I feel that I have a lot to offer parents and caregivers struggling with the challenges of autism. From my experiences as a parent of a child with autism - both the successes and the failures along the way - and also from my experiences working with many wonderful families affected by autism, I hope to help readers realize the same special and wonderful relationship with their child as I now have with my child with autism. I hope that this blog provides insights to help parents become "mindful" in their interactions with their child. I hope in reading my entries that parents will begin to think about themselves and their child's abilities and challenges in new ways. And I hope by sharing my story, both as a parent and as a guide to other parents, that I will help to spread awareness and appreciation of the amazing program of autism remediation that has changed my son's life and the life of our family, Relationship Development Intervention - RDI(R).

I look forward to sharing my journey with all of you!