[Author's note: If readers who use facilitated communication as their means of expression have thoughts on this topic, please write to me about them. Thanks. DB]

This article focuses on selected passages from published works of people with autism who use facilitated communication (Evan, in Biklen, 1993; Drummond, in Martin, 1994; Sellin, 1995; Rubin, 1995a and 1995b; and Zoller, 1992) and several who communicate through speech and conventional writing (Barron & Barron, 1992; Grandin & Scariano, 1986; Williams, 1994), noting the similarities in their perspectives on autism. Each of these authors challenges the notion that he or she is unable to understand the world, yet each also describes the frequent effort to appear and be competent, in circumstances that render that possibility a gamble at best. Interestingly, the perspectives of writers whom others have previously considered retarded resemble the thoughtful remarks of those believed to be among the most "high functioning" of people labeled autistic.

Words of Nonsense

In his book I don't want to be inside me anymore, Birger Sellin (1995) describes his struggle with putting words and context together:

I can hear and see a little too much but the sensory organs are okay its just that there's confusion inside unfortunately words sentences ideas get torn apart and torn to bits the simplest things are wrenched out of the context of the real important single other outside world .... (p. 116)

The struggle with overload leaves Sellin bereft and, as he explains, seemingly incompetent. He also writes of times when he can seem competent and yet be present in form more than content:

did you know
I can remember a thing perfectly
even important subjects
if ive read it just once
I can learn socalled important facts at a glance
its a remarkable talent
but absolutely pointless and useless without sense and understanding
birger puts everything he knows right in the middle of a
heap of chaotic poetic nonsense he has read
and makes up more nonsense
creating huge great mountain ranges of nonsense(p. 137)

Words and sense

Sellin laments at remembering "without sense and understanding" combined with a penchant for spewing "nonsense." However, in a larger sense, he does understand so very much. His problem is specific to time and context -- in other words to the competing demands of external stimuli that he encounters, interacting with his internal level of calm or its opposite. It angers him that anyone would think people with autism retarded or incapable of comprehending, for, in his mind, he's singing a song of awareness from deep down:

I think its infantile the idea we autistics are bushmen and
totally chaotic inside
that is only how it looks from outside
inside we are grown up and efficient
even without language we creatures who live in boxes can
understand all the nonsense that is said.(p. 138)

He explains the seeming contradiction between understanding on the one hand and inability to do even simple tasks on the other as a problem that emanates, in his case, from overwhelming anxiety:

I can think clearly inside my head
and I can feel too
but when I want to put the socalled simplest actions into
breathtaking practice in these surroundings outside the
crate I cant do it
restlessness comes over me anxiety and idiotic panic bring
me almost to despair (p. 138)

Such extreme anxiety courses through the writings of many, though not all, people who use facilitation. In

Communication Unbound

(Biklen, 1993), one student, Evan, wrote: "freedom, friendship and confidence ... freeing me from the frightful triangle of fear, frustration and failure. I want to help autistic people everywhere find reason and release. Positive reassurances and responses were white waters in dark tides of terror" (p. 189). Several years earlier, with a different facilitator, he had written a poem about his inner turmoil:

BLACK HOLE
ALONE IN ME
FEARING, RIPPING STRETCHING
PLEASE LET ME BE FREE FROM YOUR GRIP
DEADEN (in Biklen, 1990, p. 165).

Getting Chaos Under Control

For Sean Barron (

There's a Boy in Here,

1992) repetitive, compulsive acts gave him respite from a near constant fright. Yet these actions also kept him from awareness of what others were saying and doing. It wasn't that he could never understand, that he was incapable of complex thinking. Rather, he had other things on his mind:

I remember my mother telling me not to do things I loved, like, "Don't throw your crayons down the register!" I have a very good memory, I think. But what she said had no meaning because what I wanted to do blocked out her words. (p. 21).

Donna Williams (1994) describes a similar, seeming contradiction: confusion, competing sensory functions, unconscious/not understand- ing, existing side-by-side with excellent, piercing understanding.

I was like a deaf person who could talk; when someone else spoke, I either said nothing or spoke over them on my own track, an express train, stopping at no stations until the end (P. 75).

Yet her problem of incomprehension was not really a problem of inability to comprehend; rather it was a difficulty of comprehending at a given moment what other people were comprehending. She was sorting sensory input differently than other people:

I had no concept for the usefulness of anything but the physical, observable context, such as the room a discussion took place in or whether it was night or day. Who was related to whom, how you came to know them, or what their life story was, was of no use whatsoever to a filing cabinet using its own system (p. 99)

. As she worked at consciously thinking about her ways of deriving meaning, she found herself able to comprehend more and more,

seventy percent on a very good day (given a one-to-one conversation, a familiar voice, and familiar surroundings). I began to experience "self" and "other" equally at the same time, without fading out, channel switching, or background-foreground effect (p. 99).

Thus, Williams' struggle with understanding is not, according to her, a struggle with retardation (i.e. inability to think) but with managing the resources of awareness and thinking. Remarking on the difficulties she has observed in others with autism, including people who have been labeled severely retarded and autistic, Williams cautions that too often,

those who have trouble linking thought to action or words, or vice versa, are thought retarded or disturbed, when the problem may not be in the capacity so much as the mechanics (pp. 21-22).

More than a Problem of Movement

Contrary to some of our early hypotheses about facilitation, Williams suggests that she and others with autism have more than "a mere 'movement' problem" (p. 199). Instead she conceives of autism as a disorder "affecting all systems of functioning" ranging from awareness of proprioception, to

analysis and retrieval skills relating to information on all levels (sensory, emo- tional, mental, proprioceptive, social- interactive) and the integration of those systems (p. 196).

She defines her dilemma and that of others with autism as one of systems-management (i.e. integration) and systems-forfeiting. In order to get one thing to work, it is often necessary to abandon or neglect another. For example, the person may have to switch off emotional signals in order to accept factual information, or switch off auditory input to take in visual stimuli.

The idea that a person could be more competent at one moment than another, and even completely incompetent at some moments, all depending on the context, should be no surprise to anyone, autistic or not. In her first book, Emergence Labeled Autistic, Temple Grandin (Grandin & Scariano, 1986) includes a lengthy, poignant, and instructive letter sent by her mother to a camp she had attended, explaining that

When Temple is in secure surroundings, where she feels love above all, and appreciation, her compulsive behavior dwindles. Her voice loses its curious stress and she is in control of herself (p. 48).

Grandin reports that at times she could be overwhelmed by external stimuli, and that often, "communicating with someone -- anyone" could be difficult (p. 85). She found herself sounding abrasive, unable to follow the rhythm of others' speech, and unable to speak words that matched her thoughts. At such times, it helped to write: "I could write my thoughts and often, ... I wrote my feelings in my diary" (p. 85).

Limiting Intake to Maximize Uptake

Some people with autism describe careful listening or attending as an extreme balancing act, keeping certain stimuli at bay while consciously tuning in to another person's spoken words. Williams reports that she does best in interview conversations if she has seen the other person's questions in writing and if she herself has been able to write out her responses (personal communication). Then she can elaborate from her written words.

Sue Rubin describes the barrage of stimuli that come whenever large groups of people converge as simply too much. She must escape. "I absolutely dislike being in a crowded room because the noise and activity are overwhelming" ( Rubin, 1995, p. B6). Dietmar Zoller, another person who communicates by facili- tation, describes his similar struggles with sensory overload:

I can't travel downtown by myself. I became aware of this again when I went downtown with my parents yesterday. Most often I let them lead me like a blind man not because I see nothing but because I see too much and then lose my orientation. (Zoller, August 10, 1989).

He explains that even one-to-one relationships can be too much at times, "because the autistic person can't tolerate the other. He always notices too much and becomes overwhelmed" (Zoller, 1992, Diary entry, June 1989). He explains that the ability to think depends on "structured support" and "on the ability to sort the ever present stimuli" (Diary entry, June, 1989).

The Cost of Engaging

For some individuals, the effort to attend to others and to respond sensibly can be ex- hausting. Ian Drummond, in Russell Martin's book

Out of Silence

(1994), engages with a friend Eddie in a quite "normal" and "happy" way, but then becomes

wrapped in maddening, maniacal knots again, surely because out-of-the-ordinary experiences like the one he had shared with Eddie often were followed by a kind of uncontrollable crash (p. 295).

Ian must follow his set routines, his compulsions. And if he is interrupted or has his routines challenged -- for example he wanted his mother in the back yard when he played -- he falls apart, very much as Sean Barron describes in

There's a Boy in Here

(1992). The day after the visit with Eddie, Ian wants to follow particular routines; when his mother resists, he be- comes "wildly unstuck, screaming for hours," typing

I HATTE AUTISM. ITIS A NIGHTMATRE. SSOMETIMNES I WANTTO DIE. IT QWOULD BE BETYTER FOR EBVERYONE IF IWAS DEAD (p. 295).

It seems the routines help him maintain equilibri- um. They are an antidote to stress, including the stress of talking through writing. Keeping things the same, and following routines

...HRELPS MNE GWET CALM. ICAN GET CAALM IFI LIDSTEN TO NMUSIC BECAYUSE ITIS SO SOOTHUIING (p. 284).

Then he added,

I THUINK THERE ISA CONWECTION BWECAUSSE I NEEED TO GHAVE THINHGS THE SAME NMORE NOW THATI CAN TALK (p. 285).

For Drummond, it appears that having his compulsive needs blocked can overwhelm everything else, leaving him appearing out-of-control, unable to respond to those around him, even deranged. Yet at the same time, he hates being a slave to the routines:

I ASM JUST SO SAD BWECASUSE I CAN MNEVR BE LOIKE THE OTHER KIDDS.
["Because you can't talk like they can?"]
I DONBT CARE IGF I CAN TALK OR NOT BUTT I HATE TGHE ROUTINERES. I CVAN TY[PE WHEN I MNEED TO TAL;LK BUT EBVEN WITH THE MEDUICINE I CANNT DO THE TTHINHGS THEY DO. PLESASE MAKE MY LIFE NBETTER. (p. 271.)

Conclusion

Anyone's competence, any measure of competence, always occurs in some context. Stage fright, for example, describes the tempo- rary incompetence of a person overcome by the anxiety of presenting in front of an audience. Test anxiety describes another performance- under-pressure situation. The ultimate difficulty may occur when a person becomes convinced by the difficulties of demonstrating competence that he or she cannot be competent, and there- fore stops listening to the world's words. Sue Rubin seems to be describing this in her article for the last

Facilitated Communication Digest:

ADMITTEDLY BEFORE I STARTED USING FACILITATED COMMUNICATION I WAS RETARDED. I HAD NO THOUGHTS, COULDN'T SPEAK, READ, WRITE, OR POINT TO PICTURES OR LETTERS. HOWEVER, AFTER LEARNING HOW TO TYPE ... I AMAZINGLY BEGAN TO THINK AND LEARN. (Rubin, 1995b, p. 1)

Then she asks,

PERHAPS I NEVER WAS RETARDED .... PERHAPS AS INFORMATION ENTERED MY BRAIN IT WAS NOT PROCESSED BUT ONLY STORED (p. 1).

Like Sellin, Drummond, and so many others who have been labeled retarded, she had often been hearing noise rather than content, cut off from a world of ideas with which she could not have dialogue. It wasn't that she was incapable of understanding, only that she wasn't participating in understanding. It wasn't that she was retard- ed, only that she and the world considered her so.

References

• Barron, J. & Barron, S. (1992). There's a Boy in Here. New York: Simon & Schuster.
• Biklen, D. (1993) Communication Unbound. New York: Teachers' College Press.
• Grandin, T. & Scariano, M. M. (1986). Emergence Labeled Autistic. Novato, CA: Arena Press.
• Martin, R. (1994). Out of Silence. New York: Penguin Books.
• Rubin, S. (1995a). "Battling for the disabled with Cesar Chavez in Mind." Los Angeles Times, June 12, B6.
• Rubin, S. (1995b). "On doing one's homework..." Facilitated Communication Digest, 4(1), 1.
• Sellin, B. (1995). I Don't Want to Live Inside Me Anymore. New York: Basic Books.
• Williams, D. (1994). Somebody Somewhere. New York: Times Mirror.
• Zoller, Dietmar (1992). Ich gebe nichtauf (I won't give up). Bern: Scherz Verlag. (Translations by Annegret Schubert)