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Dealing with Silence and Coming Out of Silence

For individuals who have spent time – sometimes many years – unable to communicate, gaining the ability to communicate is a major life event that is filled with much emotion. It is important to recognize the personal and emotional side of living without communication. Some people who have emerged from silence using augmentative communication have shared their stories. These stories are rich and moving. They provide new perspectives that remind the listeners of the urgent need for understanding and for change so that augmentative and alternative communication (AAC) is readily available to all. They remind us of the importance of and the fragility of communication, relationships, respect and many other essential elements in life.

When individuals need access to augmentative and alternative communication, they may depend on the ongoing support and assistance of communication partners – all of the people in their communication network. Everyone is a potential communication partner with an individual who uses AAC methods, just as everyone is potentially a future user of AAC. We encourage you to read and learn from people who have been there and have had not only the hope and courage but also the necessary support from others which allowed them to emerge from silence and to help others by sharing their stories.

What is it like to live in silence — to be unable to communicate clearly or effectively?

Helen Keller in The Story of My Life
"Meanwhile, the desire to express myself grew. The few signs I used became less and less adequate, and my failures to make myself understood were invariably followed by outbursts of passion. I felt as if invisible hands were holding me, and I made frantic efforts to free myself. I struggled – not that struggling helped matters, but the spirit of resistance was strong within me; I generally broke down in tears and physical exhaustion. If my mother happened to be near I crept into her arms, too miserable even to remember the cause of the tempest. After awhile the need of some means of communication became so urgent that these outbursts occurred daily, sometimes hourly. My parents were deeply grieved and perplexed ... Indeed, my friends and relatives sometimes doubted whether I could be taught."

Sandra Raddisch, Sandra: The Sometimes Invisible Woman in Sharing Our Wisdom (Autism National Committee, 2003).
"Until 1992, I could only communicate that I wanted or needed something by biting my wrist. Everyone had to guess what I needed. Many times they guessed right ... but so many times they guessed wrong. I screamed inside for a way to express my needs, desires, thoughts and feelings. Then they tried facilitated communication with me ... The first time I typed, everyone realized that I was not as stupid as they thought ... Without a facilitator I am plunged back into silence and invisibility."

Jeremy Haines
"During my teenage years, I often felt invisible."
Jeremy's Talk:

Ian Wetherbee, Listen – I am in here! December 19, 2005 "Way long ago in another time, I was lost and adrift, though I wasn't far from shore. I could see the shore, but nobody on shore could see me. One day I tried my best (again) to get someone's attention and, wonder of wonders, someone noticed me. She wasn't sure that I was there, but she thought that she saw somebody. While she was searching for me, people who had found others who were lost like me showed my parents a way to find me. My parents may never have listened except for she who had seen glimpses of me and had tried to show them where I was. They did listen, however, and consequently they searched for me as they were instructed to do. I was found ...
I will explain. I was lost on the autism spectrum, on the part of the spectrum where people either can't talk at all or only utter meaningless things ... Facilitated Communication is just a long name for a low tech solution to the dilemma faced by people like me. Human touch on the hand frees us to be able to type our thoughts. It isn't a perfect method, but it is all we have."

Polly Medlicott and Chris Mueller-Medlicott, Tell the World. Every kid is really smart. We're the ones who are retarded in Mouth Magazine,
"What my son Christian and I want to tell the world, in hopes we might save some other kids, is his own story because Chris's silence nearly caused him to be lost ... Since you can't express preferences, you are presumed not to have them. You become passive. Gradually, you withdraw even further, until finally you stop trying, stop responding, stop looking at people ...
CHRIS: The effect on me was damn frightening. Got me terrified of uneducated popular opinion.
What my son Chris and I want to scream to the world is this: How can professionals not understand that when they don't give a kid a way to communicate and the tools to do what other kids his age are doing, he will become deeply depressed and stop trying? Once he gives up inside, he will look even more 'retarded' on the outside, even if, like all kids, he is really smart. Can't you see that you destroy a life when you decide a kid doesn't need a communication system, based on the fact that he doesn't communicate?"

A friend of Tyler Fihe wrote:
"Help us communicate so we feel like human beings." Breaking the Barriers website, personal stories

How do people cope with years of silence?

A friend of Tyler Fihe wrote:
"Laughing is the only way to get by the unlivable sadness of silence ..." Breaking the Barriers website, personal stories

Mark Reeves
"A prisoner of his own silence. That's how Mark Reeves of Watsontown felt before being introduced to Facilitated Communication. For 21 years, while being schooled through the Trainable Mentally Retarded classes at Mifflinburg High School, Reeves was unable to effectively communicate.
'I was a sponge and absorbed the world around me,' reveals the 36-year-old Reeves. 'Because I couldn't speak or ask questions, I took everything in and filed it in my brain for future use. I believed some day I would be able to communicate.'" (Newspaper article appearing in the Daily Item by Debra Brubaker. Originally online at That article is no longer available but the text has been preserved here:

Chandi Rajapatirana Now I Have Words in Sharing Our Wisdom (Autism National Committee, 2003)
"I lived in a silent abyss until I was almost eighteen years old. I endured years of yearning, countless hours of desolation, until facilitated communication rescued me."

What is it like to emerge from silence — to learn to communicate clearly after years of being unable to do so?

A friend of Tyler Fihe wrote:
"I had to relearn that I can be something!" Breaking the Barriers website, personal stories

Chandi Rajapatirana, Now I Have Words in Sharing Our Wisdom (Autism National Committee, 2003) "Accustomed to living in the abyss, coming up to the light was hard. Beset by memories, I am still terrified. Terrified that I might go back there. If FC were taken away from me, that is where I would be."

Jeremy Haines
"For me, it was a very strange time, because I was not used to being asked questions. The only things I had been asked, were about food and drink, never about my feelings. This type of communication, called facilitated communication, meant that now, I could tell people I was a real person ...
Of course, it has been harder than I thought it would be, and is taking lots of hard work to learn to communicate, rather than just talking. I still find it difficult to say exactly what I mean, or to disagree with others, or to put forward my own point of view. I have found that it is scary, when people expect me to set goals, and work to achieve them. However, I still feel it is worth the hard work, because to me, communication is more important than anything ...
I like being with people who are not disabled, because then I don't feel so much that I am different ..."
Jeremy's Talk

An urgent question that shows the need for support through the transition from silence to communication:

A TASH conference participant in 1992 urgently posed the following question:


Links: Personal Stories