Parents and Self Advocates

Recently in the NY Times, two perspectives were provided of a life with Autism. One was that of a parent and the other of a self advocate. These perspectives were provided in response to the following study-
http://www.sciencedaily.com/releases/2009/07/090708153233.htm

An excerpt:

“"Both groups of women are dealing with children who need high levels of care-giving. But there is something about autism that is making a difference and adding stress and psychological distress to these mothers," said Annette Estes, lead author of a new study and associate director of the UW Autism Center.

Surprisingly, the research also found no link between a child's decreased daily living skills and increased parental stress and psychological distress.

"This finding was counterintuitive," said Estes, who is also a research assistant professor of psychiatry and behavioral sciences. "If a child has more needs in getting dressed and in other daily living skills, that means the parents are working harder and seemingly would be under stress. But it is not the hard work that is stressing the mothers. Our findings really pointed to the behavior problems that can occur with autism. Children with autism had significantly higher levels of problem behaviors than children with developmental delay."

These behavior problems included such things as irritability, agitation, crying, inappropriate speech and not being able to follow rules.

For this study parental stress was defined as being the stress directly related to a person's role as a parent and parenting a child with a disability. Psychological distress is more general stress, such as that experienced by a person who is nervous about her job or life in general but may or may not be confident about her parenting.”

The parent’s perspective can be found http://parenting.blogs.nytimes.com/2009/07/22/the-unvarnished-reality-of-autism/

The mother states that she despises euphemisms like “tantrum” or “crying”. She gives examples of her reality with her son.

The self advocate’s perspective can be found http://parenting.blogs.nytimes.com/2009/07/22/autism-from-the-inside-looking-out/

The self advocate gives suggestions regarding behaviors and insight into the behaviors. She also describes how reading the mother’s perspective made her feel.

I have read the comments on the articles that include these posts. Often, a line is drawn in the sand and people are choosing sides. I believe that both perspectives are valid as they are the authors’ experiences. I struggle with the idea that a line has to be drawn in the sand over these posts and a side chosen. I think that these items show two very valid and real sides of the emotional coin that is ASD.

I understand when the mother states that often the reality of raising a child with ASD is varnished over to make it more palatable to the masses. I too hate when I talk about something that is hard for Little Bug and its results, only to receive a reply of “all kids have tantrums” or “all kids do X.” While I appreciate that the person saying it may be trying to either make me feel more secure in a situation I am having difficulty with or truly not understand, usually I feel isolated.

When this happens, I feel like people *don’t* understand. They don’t understand that some of the “tantrums” Little Bug has at times last a couple hours and are uncontrollable tornadoes of emotion and physical injury. To me, that isn’t a tantrum. To me, it is a crisis in which I worry about my child injuring himself or others.

I laughed when I read the words “irritability and agitation” in the study. Little Bug has an acute need for sameness. All the bottles in the shower must be placed on the same shelf every time and labels must face out. If they aren’t that way, he will refuse to get in the bathtub. While this may seem minor to you or be described as being “irritable”, it is crippling to him. He becomes incredibly “agitated” by loud noises- trucks, motorcycles, and airplanes. By agitated, I mean that he covers his head, hides under something and screams. To him, it seems to appear that there is some kind of imminent attack.

I disagree that our life is a nightmare. I believe that it has nightmarish moments- like when he tried to eat glass, tries to break out of the house because he sees something he wants outside, or when he has a fever of 102 but cannot tell me what is wrong because he doesn’t feel pain and lacks the verbal skills to understand what I am asking.

I wish that I could better identify with the self advocate. I have found myself reading more books written *by* people with ASD rather than parents. I want to know what drives the behaviors and feelings. I want to help.

I love my son deeply and fiercely. I can’t change the fact that he has Autism. I am not ashamed of him. I also am not ashamed of my feelings. I fully intend to have Little Bug read this blog. I know that he may be hurt by some things and enjoy others. I know that regardless, he will know that it was written with love and concern. Most of all, I know that I will listen to his experiences and feelings- even if I don’t like them or feel hurt by them. I will because they are real and valid.