Real People, Regular Lives:
Autism, Communication & Quality of Life
By Sally Young
Published by Autism National Committee, 2011, 288 pp.
Review by Anne Carpenter
Ever since the 1990’s when Facilitated Communication (FC) burst into the forefront of education for people on the autism spectrum, it was controversial. No one wanted to believe that the highly sophisticated and articulate pronouncements issuing from hundreds of keyboards, letter boards and computer screens were coming from people whose behavior often included rocking, making noises and aggressiveness, as that flew in the face of prevalent thinking about autism. It was hard to believe that people who were so severely affected could be so articulate. Dr. Sally Young’s brilliant and compelling new book, Real People, Regular Lives: Autism, Communication & Quality of Life, explores this phenomenon and its ramifications for society.
The book begins with a short introductory chapter, giving a brief explanation of autism and a short discussion of communication and quality of life, then goes into the real heart of the book, narratives of adults with autism who have used FC and are telling their own stories. They include Barbara Rentenbach, Chammi Rajapatirana, Nick Pentzell, Sarah Stup (who wrote Do Si Do with Autism), and several others. In their communications, they express the sheer frustration resulting from their sensory processing difficulties and their movement differences, making life more difficult, because they engaged in behaviors that were out of their control. But something wonderful happened when their facilitator touched their arm and their fingers hit the keys. They felt in control for the first time in their lives! New worlds opened up for them, and they were able to explain why they needed to engage in certain behaviors that were deemed “challenging” but that they didn’t need to do anymore.
For example, when Barb Rentenbach used FC, she no longer broke her glasses, as she no longer felt the need to do that; she also got better glasses and her vision improved markedly. The stories are so heartfelt and compelling that it would be hard for anyone to be as skeptical about FC after reading them. In Part III, the author explores in great depth issues relating to FC and communication including skepticism which, in a few situations, has been justified, as it has been found that a very few facilitators are doing the communication, not the person with autism her or himself. The validation studies done in the early 1990’s and the Frontline show, Prisoners of Silence, broadcast in 1993, all threw a bucket of cold water over facilitated communication. Though many questions have since been raised about the approach and quality of these studies, many agencies stopped allowing their clients to communicate.
Other themes that are discussed include sensory and movement differences, relationships, emotions, FC at school and in the workplace, building protective worlds against a harsh environment, behavior, personhood and spirituality. These themes go
into real depth and bring the experience of autism closer to those who do not experience it.
I was awestruck by the book. The narratives were beautifully written and revealed powerful insights into what autism was like for each person. One can see that these are intelligent minds here; no IQ score can possibly measure what these people are thinking, feeling and doing.
FC needs to be looked at more closely, and it should be given another chance. We owe this much to people with autism who would otherwise be voiceless in institutions, group homes and sheltered workshops. Now that the 21st Century is well underway, we need to move forward, not backward!