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Autism and the Myth of the Person Alone (Qualitative Studies in Psychology)

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There are many authors on the autistic spectrum who profess to know how non-verbal people think, feel or experience and its easy to imagine that people with a shared label can all speak for each other. Fact is, however, non-verbal people have always borne the brunt of fanciful, patronising and condeming projections alike. From claims they are all fairy spirits, to claims they all think in pictures, to claims they are all trapped geniuses or that they are all mentally retarded, non-verbal people have lived on the side-lines listening to, sometimes reading this stuff, waiting to have their own say, to have that say respected and published.

Born in the diagnostic ignorance of the 1960s, as a person with dysfunctional language till my teenage years, I was still being thought deaf till I was nine and when that was ruled out, the verdict was that I was disturbed, until I was finally diagnosed with autism in my 20s. I don't profess to know how any other functionally non-verbal person thinks, feels or experiences but I can certainly identify strongly with what it is to be unable to assert my sanity and intelligence well into late childhood with doubts still persisting into my teens and I applaude the committment, the humility, the humanity of Doug Biklen (and those of his ilk) for all he has done for the world of functionally non-verbal people, not only championing their rights, providing them opportunities to be heard in their own voices through typed communication, fighting for the equality and validity of typed communication and taking the patient effort to let this wonderful diversity of functionally non-verbal authors unravel and tell their own stories in their own words so wonderfully in this book.

These authors demonstrate a diversity of means through which they came to typed communication, a range of relationships to thought and styles of thought and they do so with wit, with anger, with sadness and often forgiveness of an ignorant world that I'm not convinced always deserves that forgiveness. They are the new pioneers in this field, not only people typing, but people who have established themselves creatively as authors and artists in their own right.

I can't recommend this book highly enough. I'd have given it 6 stars if I could.

... Donna Williams
bestselling author with 9 books in the field of autism.

Finally a book that challenges some of the most dangerous and pervasive beliefs on autism today-- that people are "alone" and without social interests, deep relationships, joy, passion, and love; that our job is to find what is wrong and to change it; and that the professionals must lead the way in this quest for undestanding autism. Biklen and his colleagues with autism (Jamie Burke, Sue Rubin, Larry Bissonnette and others) help us see that people with this label are leading lives that are complex, challenging, interesting, and rich and that our "job" in education (or human services) is to listen and collaborate. Further, this book demonstrates that it is people with autism themselves who need to define, explain, and teach about their label and their lives. I have already read this book twice and given a half a dozen away to colleagues. If you only buy one book on autism this year- "Autism & The Myth of the Person Alone" should be that book.

This is an outstanding book, one of the landmark publications to date from the literature of autistic people speaking for themselves.

Of course autistic people can and do communicate. Scientists have defined the category of autism by an impairment of communication, not its absence. Nor do the criteria say anything about intelligence (however that concept may be defined).

Readers will discover that Douglas Biklen, the book's co-author and editor, addresses these issues in the introductory chapter:

"In light of the controversy, this book includes [with one exception] individuals who can type without physical support or who can speak the words that they type, before and as they type them and after they have typed them."

It's interesting that the present controversy echoes similar debates that have occurred in the last century regarding the capabilities of deaf people, people with cerebral palsy, people of non-European descent, and so on. Those debates included assertions from the existing power structure that the dis-empowered class of people (whoever they happened to be) couldn't/didn't/shouldn't speak for themselves. Sound familiar?

A bit more on the science and how this book addresses it. Why, and among whom, is FC (facilitated communication, or typing with the help of another person) controversial? The primary reason is that peer-reviewed publications, including controlled studies, show mixed (not only negative) results. On page 9, Biklen elaborates:

"Controversy has swirled around the method of facilitated communication because it has been shown that a facilitator's physical touch of the typist's hand or arm could influence the person's pointing, and because a number of studies failed to validate authorship ([13 references cited]). Each of the above studies used one basic type as assessment, namely, message-passing; the person being assessed was asked to convey information that could not be known to the facilitator. Other studies, using a range of test situations as well as linguistic analysis and documentation of physical, independent-of-facilitator typing, have successfully demonstrated authorship ([11 references cited])."

So the controversy is in fact not a matter of scientists vs. nonscientists, but of debate based on evidence and reason (with some emotion thrown in from all sides; the parties involved are only human, after all). From the scientific literaure, here's an example from researchers at Harvard and MIT:

"The case of a 13-year-old boy with autism, severe mental retardation, and a seizure disorder who was able to demonstrate valid facilitated communication was described. ... This case study adds to the small, but growing number of demonstrations that facilitated communication can sometimes be a valid method for at least some individuals with developmental disabilities." (Weiss MJ, Wagner SH, Bauman ML. Mental Retardation. 1996 August.)

Since that study, scientists have published further work suggesting that autistic people are capable of more than has been previously assumed. According to a recent review on IQ testing of autistic people:

"There are frequent claims in the literature that a majority of children with autism are mentally retarded (MR). The present study examined the evidence used as the basis for these claims, reviewing 215 articles published between 1937 and 2003. ... Overall, the findings indicate that more empirical evidence is needed before conclusions can be made about the percentages of children with autism who are mentally retarded." (Edelson, M.G. (2006). Are the majority of children with autism mentally retarded?: A systematic evaluation of the data. Focus on Autism and Other Developmental Disabilities, 21, 66-83.)

The idea that (nonverbal) autistic people can't/don't/shouldn't speak for themselves cannot be defended, except, echoing Oliver Sacks, by an appeal to the notion that "the alternative is unthinkable". (In other words, we've assumed it to be so, and the consequences of acknowledging our errors are so vast that it's safer to deny evidence to the contrary.) I say it's about time to think outside the box, or really, to expand the umbrella to include autistic people (along with everyone else) such that their basic needs for self-expression are met. If you're into that, you will like this book. If you're not, you really ought to read it and reconsider.

I rate this as one of the most important books to read if one is studying autism, or is learning about one's child with autism. The author interviews people with autism and we learn again, to respect difference and understand autism as a way of being.

I do find diatribes like reviewer # 1 above depressing. Scientific method used to mean the attitude of Galileo's going up to the top of the tower, dropping his weights, and writing down what he observed; it now seems to have been twisted into the attitude of his critics, complaining that what Galileo saw happening was impossible because it wasn't described in the books on their shelves.

I was particularly impressed, in fact, by the way that Biklen in this new book ignores the attacks of those-who-will-never-be-convinced in favour of trying to find out what we can actually learn from these people - the meaning of the severely autistic experience, seen from the inside. His delicacy of analysis is right up these with Kanner's, and his long experience in research is evident on every page.

When I recommend that people buy just one book about autistic people, this is usually it. It powerfully destroys stereotypes about autistic people whose primary mode of communication is not speech, including the idea that we all have the same experience of the world or that we all came to our current method of communication in the same way (or even that we all use the same method of communication). It also deals with the routine underestimation of autistic people that happens as a matter of course, and the folly of the ongoing automatic classification of some autistic people as 'low-functioning'.

It's about time we had a book that debunks and confronts head on the fallacies about autism. I am sick of the fallacy that people with autism are alone and choose solitude. Bull manure! People with autism love and crave social interaction, but have difficulty in navigating on tricky social grounds.

It's about time we retired that tired fallacy about "fixing" people with autism altogther. I am sick of people with autism being regarded as being in need of repair - how about we "repair" the neurotypical (NT) myth once and for all? If you want to know more about autism, then talk to somebody who has it. Not all people with autism are nonverbal. Many is the time when people with autism have asked NT people how to pass for NT and other tips in surviving in a world that tilts in favor of the NT population.

It's about time adults with autism living full, productive lives were given a turn at bat. Kudos to Biklen for introducing several people with autism living rich, full lives replete with socialization to us all. If you want a glimpse behind the Autistic Curtain, then this book is for you.

It's about time to read this!

In the plethora of works on ASDs, Biklen's edited volume is a must-read for anyone interested in understanding autistic experience with an eye to theory or therapy.

This is a beautiful book, an important book, a book that should be required reading for everyone who has any dealings whatsoever with persons with autism. It is awe-inspiring to read about how seven individuals, each of whom experiences autism in unique ways, have learned to move beyond the ongoing challenges they face daily to live full lives with the assistance of a communication method known as Facilitated Communication.
This book offers not only an intriguing look at some of the many faces of autism, but also at how the use of Facilitated Communication has allowed them to express their thoughts, expose their intelligence, and to be an active member of the world community.

Although this book "Autism And The Myth Of The Person Alone" by Douglas Biklen of over 300 pages of small print is part of a series "Qualitative Studies in Psychology," it contains an immense quantity of superb data. While it may be possible to conduct some scientific experiments in less than 15 minutes, this book contains data gathered over a period of over 15 years, including a recent solid year of full-time work by Professor Douglas Biklen (now Dean) of the School of Education of Syracuse University in New York State. This data goes far beyond being just "anecdotal" evidence.

This book was written with major contributions from 7 persons with autism, including Sue Rubin who recently wrote the script for a 40 minute DVD entitled "Autism is a World." I bought both the book and DVD at the same time and I feel that they greatly complement each other. Although I found the DVD to be an excellent visual presentation of autism, this book provides the detailed information that just cannot be shown in a 40 minute DVD. While "Facilitated Communication" ("FC") is not mentioned in either title, FC plays a significant role in both the DVD and this book. After reading the 300 very well-written pages of this book, I believe that any open-minded person will have an appreciation of FC and consider its use with persons with autism who do not yet have an effective means of communication.

Skeptics may try to dismiss Sue Rubin in "Autism is a World" as one isolated case or even the 7 contributors in this book as isolated cases. However, I know from my own actual experience that the results from these 7 persons with autism have already been "replicated" with numerous others, including my own 33 year-old son Ben Golden. The skeptics do have their own very costly alternatives for the "treatment" of autism, but despite my extensive search of many years, I have not been able to find their books with comparable results.

I highly recommend this book not just to anyone involved with autism but also to anyone interested in human potential.

Arthur Golden