Friday, August 17, 2007

Movement Differences

I was recently given a document with a request for input.
The author of the document is Martha Leary, MA, CCC-SLP. Martha has worked with autistic people and their families for over 30 years. I was fortunate enough to see one of Martha’s presentations recently, and thoroughly enjoyed the experience and perspective she brings to the issue – especially as relates to language and movement differences in autistic people. This brief essay is a summary of how movement and communication differences are inherent to the label of autism, and how they affect people’s perceptions of autism as a disorder.

I feel this is a poignant, appropriate summary that could help interested NT readers gain some perspective in their understanding of autistic people. Please comment and let myself and the author know what you think.

Movement Differences for people with autism
Martha R. Leary

The diagnosis of autism is not prescriptive of the type of supports needed for assisting the person to participate, relate and communicate. Relationship is the basis for participation and communication, for all people. People with autism often communicate, behave and participate in unique, very personal ways that may be difficult to relate to and understand. Differences in the way people are able to use their bodies and focus their attention leads many people to assume that a person does not care to participate or communicate and does not desire relationship. These assumptions affect our expectations for people, the way we speak with them and the educational and social opportunities we offer to them. Our assumptions color the support we give to people.

People labeled with autism move their bodies in ways that are unfamiliar to most of us. Some people rock, repeatedly touch an object, jump and finger posture while other people come to a standstill in a doorway, sit until cued to move and turn away when someone beckons. As professionals trained to believe what we see, most of us have interpreted these movements as volitional behaviors, communicative acts signaling avoidance of interaction and evidence of mental retardation. We have taken a ‘literal’ interpretation of what we see and extended it into a notion of what constitutes autism.

Some behaviors may not be intentional, but an artifact of the difficulties a person may have in organizing and regulating sensation and movement. Other behaviors may be subtle signs of the desire for relationship or expressions of meaning. When we focus on our standard expectations for behavior and communication in our fast paced, super technological world, we may miss opportunities to know and understand people who are likely among the most patient and best listeners on the planet.

Detailed personal descriptions of sensation and movement differences found in other disabilities have given us some clues as to what it may be like to deal with symptoms such as compelling impulses, a loss of conscious control, lack of initiation, akinetic moments and unusual ways of being in the world. Leary and Hill (1996) analyzed the literature on symptoms associated with established movement disorders and those associated with autism. The greatest difference among these disabilities was the interpretation of the symptoms. In Tourette syndrome, Parkinsonism and Catatonia, there was a neurological interpretation of symptoms. There was a social interpretation of the same symptoms if the person had a label of autism. That which is called a ‘tic’ in a person with Tourette syndrome is most often considered a ‘behavior’ (and often a conscious choice) in a person with autism. A ‘bark’ by a person with Tourette or another movement disorder is appropriately supported, in autism it is a behavior to be reduced often with a negative intervention.

Humans carry inside, an image of themselves that includes reasons for and the possibility of change. We need to know that we are OK just as we are, even though there are things we may want to learn or to do better. In our journey of change, we need allies who will collaborate with us to find the most comfortable and effective ways for us to learn new ways to participate in our families, with our friends and as contributing members of our communities. Supports for people with autism should reflect the respect and dignity due to all people and address the challenges with which people struggle in organizing and regulating themselves in response to the sensory environment and their movement differences.


laurentius rex said...

I came away from autscape, having had my stims described by one observer as dance.

I like that :)

Club 166 said...

When my son was in Kindergarten, even though his stims had been described to his teachers, there were still notes made on him referring to him making "rude" noised during class.

I nearly went ballistic.


Bev said...

Some very good observations here about interpretations some people impose on autistic differences. Thank you for posting this.

Steve D said...

Interesting as always, Larry.

I am so glad I cannot relate to your story, Joe. Jason's experience with school has been largely defined by a positive staff who tries to understand the situation.

Bev - Thanks for your comment, and I agree.

Navi said...

Joe, I can somewhat relate, but not with my autistic son, but with my not so nt daughter. She has emotional issues, tied largely with anxiety, perfectionism and a different way of looking at things. Most of her school reports are very positive, while still addressing her issues. And then I got the art class note back. Granted she received high marks, but was listed as 'mouthy' in a not so glowing statement. I felt like going ballistic, as well. But since it was a specials teacher, and not her main teacher, I figured it was a bit of a learning experience for her to deal with someone that doesn't fully understand her. Of course, the fact that she was still given credit for her skill/work made it easier to swallow.