My interest in autism came about naturally. In the early 1970s, a team of Syracuse University researchers, myself included, worked with public schools to include students who had previously been excluded on the argument that their needs were too severe and/or that they were uneducable. As a matter of principle we believed that all children could learn. And so we began to create “inclusive classrooms” with students with autism and other developmental disabilities sitting alongside non-disabled students. Included in our work were students with autism who had little or no speech and who had no other effective means of engaging in complex communication. Simply stated, we were anxious to find ways for students with disabilities to enter into academic learning.
Children and youth with autism confused us, for their disabilities were incredibly complex and, at the same time, intriguing. We saw hints of competence– for example a 7-year-old boy could read notes that we would give him and he could do tasks that were described on the notes, yet he could not describe the tasks or otherwise converse with us— yet in so many ways students did not have effective means to interact with their peers or teachers. Some of our early efforts are illustrated in our first documentary film, Regular Lives (PBS, 1988).
A year after that film aired, I had the opportunity to lecture in Australia. While there, I learned about facilitated communication (FC) from Rosemary Crossley, an educator and communication specialist who was working with students with cerebral palsy, Down syndrome, autism and other conditions. In 1990, I published my first article on facilitated communication in the Harvard Educational Review even as we began to use the method in Syracuse with students whom we had included in regular classes.
Throughout the 1990s and in the current decade, my work has involved doing research on facilitated communication and related methods (e.g., pairing speech with typing) and on ethnographic investigations of autism. At the core of our investigations is a simple question: once individuals with autism find effective means of communication, what can they tell us about how they experience the world and, especially, how they experience autism? This work has been eye opening, for while it supports some aspects of professional understandings of autism, especially difficulty with communication and distinctive responses to demands on the sensory systems, it suggests a different paradigm altogether in regards to cognitive competence.
The overriding message that we can cull from the autobiographical narratives we have collected is that individuals with autism can experience immense difficulties with all kinds of performance, including initiation, sequencing, pace, eye-hand coordination, and other aspects of motor performance and that these can be exacerbated by bouts of anxiety and other emotional states. I have written about these issues in the book Autism and the Myth of the Person Alone (Biklen, 2005) and they are also revealed in the films Autism Is a World (Wurzburg, 2004) and My Classic Life as an Artist: A Portrait of Larry Bissonnette (Biklen & Rossetti, 2004).
The following quotation from Sue Rubin, extracted from the book, Autism and the Myth of the Person Alone, suggests the complexity of challenges that individuals with autism are sharing with us:
|I rarely find the strength in my autistic capabilities to initiate a conversation. There may be times where something pertinent eats away at me until I either find a moment where my body and mind coincide and I am able to go get a device to converse with. Sadly though, most times I am not able to do this unless one of my friends initiates or prompts me to get a device for communication purposes. … If I am prompted with leading questions I am more than happy to answer in great detail. Sometimes, though, these details will become repetitive because I have become stuck on minor details, which are of little or no relevance to the situation. I am very aware of when I get stuck on a moment. It takes someone who knows me very well to be able to stop those moments. It varies though as to what I am going through. Sometimes a verbal prompt is enough, yet other times I feel the desire to start my statement over, and need to be able to have that opportunity to restart my thinking process. I rarely initiate anything in my life unless it concerns my basic needs, I will tell someone when I need to go to the bathroom or if I am hungry, but I rarely tell a friend that I would like to have a conversation about a certain topic.
As readers might imagine, unless persons observing Sue understood what she is thinking, it would be easy to interpret some of her responses or seeming non-responses as evidence of not being engaged or as disinterest in the world around her; nothing could be further from the truth.
It has been extremely gratifying to see that other scholars are drawing heavily upon first-hand narratives to derive new understandings of autism. For example, Kluth and Chandler-Olcott have written a book entitled, A Land We Can Share: Teaching Literacy to Students with Autism (2008) that is loaded with quotations from people with autism, many of whom use typing as their primary means of expression. Similarly, Stuart Murray, in his book, Representing Autism: Culture, Narrative, Fascination (2008) draws heavily on the words of people with autism, some who speak (e.g., Williams and Grandin) and others who primarily use typing to speak (e.g., Baggs and Bissonnette), offering a view of autism in which the people who are seen as autistic are highly engaged in and interacting with the broader society. I find it exciting to witness and to have our research be part of unveiling this new face of autism.
Douglas Biklen, Ph.D.
Dean, School of Education, Syracuse University
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.