Systems Shifts and Shutdowns
Notes from Donna Williams' Keynote -- by Alan Kurtz
(Reprinted with permission from Facilitated Communication in Maine...An Update, Vol. 4, No. 2)
One of the highlights of the Fourth Annual Facilitated Communication Conference in Syracuse was the keynote of Sunday May 7, 1995. Donna Williams, author of Nobody Nowhere and Somebody Somewhere, delivered an inspiring speech that provided about 400 awed listeners with poignant insights into the difficulties persons with autism may have in processing sensory information. Because of Donna Williams' own problems with sensory overload, we were instructed by Doug Biklen not to applaud. Instead, the audience rose and stood silently at the conclusion of the talk to show their appreciation. Every speaker who I heard the next day referred to Donna's keynote -- an indication of how stimulating and moving her speech was.
Acknowledging that persons with the label of autism all experience the condition differently, Donna Williams explained that for her autism is a problem of information overload. Information overload can occur when a) information is coming in too quickly to process, or b) when a person is unable to filter out irrelevant stimuli. Williams experiences both of these issues.
Donna Williams compares her sensory system to a soundtrack. While most of us can process information on several tracks at once in a "multi-track" mode, Donna often works in a "mono- track" mode. One system may come when another goes. Donna Williams sees it as an involuntary compensation for information overload. She responds to information overload by automatically switching into mono. It is like "having one jar of peanut butter but 100 sandwiches to spread."
Donna Williams said that people who operate in mono-track have difficulty with processing, monitoring, and accessing information. She discussed each separately.
PROCESSING -- Most people can process using all senses simultaneously. "Those who are mono can often process with only one sensory mode at a time. For people who work in mono, processing what they are watching while walking may mean that their body arrives in places as if by magic."
MONITORING -- Difficulty with monitoring one's own body and actions can lead to difficulties with communication. "Most people know what their body is doing while they are speaking or what their face is doing while they are using sign. Most people are able to consistently monitor all these things because they are multi-tracked. People who work in mono are not so efficient at this. While speaking they may have no idea of their movement or facial expressions. While they are monitoring their facial expressions they may lose track of the volume of their speech or its intonation or its pace. While they are monitoring their volume, their pace, or their intonation, they may lose track of the word order or even lose track of the words they are using and whether they are saying what they meant to say."
ACCESSING -- According to Donna Williams, most people can access thoughts, words, movements, and memories, simultaneously. "People who work in mono are not so efficient in doing all these things at once and they may have processed the meaning of what's happening but still not have accessed any information that would give them some idea of how to respond."
Williams says that people who are mono cannot process the literal meaning of an event instantly the way multi-tracked people can. Responding spontaneously to people or events can be difficult for someone who has problems accessing more than one thing at a time. Most of us respond to situations by accessing past related experiences and our feelings about those experiences. The person working in mono may not be able to access these experiences. New situations may be very difficult to respond to and the person may have to rely on learned rote responses.
Communication is an incredibly complex process that minimally involves accessing the thoughts and words we want to express, processing the words of others, monitoring our own body's movements as well as the movements and expressions of others, and accessing the actual mechanics of communication. Donna Williams claims that accessing all of these things at once is nearly impossible for persons operating in mono. She describes the process of trying to respond with intention:
"People who are mono may be able to access only one thing at a time and they may be able to access the thought of what they intended to do but once they access the movements to do it they forget the thought that was driving the movements and they may arrive at the destination but have no idea of why they had been going there. People who are mono may access the words that they intended to say but then when they access the physical means to speak the words may lose the thought that they had intended to express. Even if they can recall the words they intended to say they may not be able to simultaneously access the purpose or intent behind these words. And the result of this may be that the motivation of speaking gets lost so that nothing is said or what was to be said comes out but sounds personally detached or even unintended."
When I hear these words I think of individuals I have known who were working on becoming independent in their communication. At times they could type a single letter or word independently but then they reverted to random typing or to typed echoes. Could the effort required to plan the mechanical act of independent pointing force someone into a "mono" mode? Does s/he lose immediate access to the thoughts s/he wants to express? Does facilitation make the mechanics of communication easier allowing the "mono" person to focus on what s/he wants to say?
Donna Williams stresses that being unable to "consciously and voluntarily" access thoughts or words is different from not being able to understand. Information can be stored subconsciously and processed over time. Triggers in the environment often allow her to express her knowledge automatically. Donna Williams sometimes describes this automatic expression as being on "automatic pilot."
INVOLUNTARY COMPEN-SATIONS FOR PEOPLE IN MONO AND FACILITATED COMMUNICATION -- Donna Williams believes that facilitators must take into account "systems shifts and shutdowns" -- the involuntary compensations made by persons in mono. Because of these compensations there can be no single way of doing FC. According to Williams, one person may be able to process a facilitator's prompts to look at the keys, questions, and touch all at the same time. "Others might only be able to process body connectedness as long as they are not listening."
Systems shifts and shutdowns will vary with different people, times, and different support people. Facilitators must be flexible and responsive to FC users' shifting modes of processing information. Facilitators must also be aware that individuals may be able to voluntarily access information on one day and not on another.
According to Donna Williams, validity testing with FC is very problematic. There are many things that can interfere with accessing and processing on any given day. Changes in the experimental situation could lead to systems shifts and shutdowns caused by factors that are not predictable or controllable. These factors could include things such as glare or "shine," the presence of an unfamiliar person, or the smell of someone's perfume.
Donna Williams also defended stored automatic responses as a legitimate form of expression -- if not communication. Donna Williams says that her writing "is on a subconscious automatic base." Williams goes on to contrast this with "the unintentional mirrored expression of other people."
Anyone interested in spoken echolalia or in typed echoes will find Williams' discussion interesting and provocative. I think that it is important that we continue to engage FC users in this discussion as well.
Donna Williams also discussed ways for helping persons with sensory overload problems, such as reducing excessive intonation as well as reducing visual and touch information while talking. Those wishing to learn more about her thoughts on that subject should write to the Center for Community Inclusion, Maine's University Affiliated Program, University of Maine, 5717 Corbett Hall, Orono, ME 04469-5717. The Center has an audiotape of Ms. Williams' presentation available for lending to the public. Please call Deb Seymour at 207- 581-1084 if you have any questions or would like to borrow the tape.
Donna Williams' speech reminded us that the best insight we can gain into the lives and experiences of people with disabilities comes from the people with disabilities themselves. Individuals such as Temple Grandin and Sean Barron have done a great deal to improve our knowledge of autism. The significance of a person's words is obvious for someone as articulate as Williams. It is less obvious but no less important for those who communicate more slowly, in more subtle ways, or with assistance.
Donna Williams, in spite of her eloquence, continues to struggle in her attempts with spontaneous interaction. Processing, accessing, and monitoring difficulties makes communication arduous. As we try to help persons with disabilities communicate we must keep their incredible efforts in mind. At times we need to reciprocate with the same kind of effort as we listen to them.