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| Facilitated communication (FC) is a method of communicating by assisting a disabled person (any number of disabilities, including cerebral palsy and autism) to type, ranging from holding a person’s hand as they type, to simply standing near them. A few FC users use a head-pointer rather than a finger in typing, for example Kim, with Rett Syndrome, whose mother holds her head to inhibit involuntary head motions and ensure that she looks at the board while typing. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| FC has been very controversial. FC, if accurate, indicates many severely disabled people are very underestimated, raises issues of discrimination relevant for all severely disabled people, and in some cases even exposes child abuse. Many people have strong motivation to deny the accuracy of claims by disabled self-advocates by numerous ways. In those who are undeniably communicating their own words, such as independent typists and speakers, the favourite way is to assert that they are exceptions, or their claims are only applicable to a select group of people. For example, at http://www.autistics.us/library/ambweintraub.html, Amanda Baggs, an autistic woman who types independently and sometimes speaks, responded to a mother of two autistic children in the following manner(firstly, a quote of the mother): | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| This is a response to Kit Weintraub and everyone who holds an opinion like her, as expressed in the following paragraph regarding her son and autistic human-rights activists: | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| He is not like these people; he was much more severely afflicted than any of them, despite their claims to having a full range of autistic traits. Don't you question the fact that these people are highly verbal and intelligent, many of them successfully employed and in relationships, yet many of them claim not to be fully toilet-trained? Lack of self-help skills and self-injurious behaviors are usually associated with people who are lower functioning who are unable to express their wants and needs. These are the facts. I question strongly as to whether these people are being truthful. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Come over to my house. Right now. Make sure I have, and eat, food. Make sure I have, and drink, water. Make sure I am living in sanitary conditions. Help me shower. Help me brush my teeth. Empty the full garbage pail full of used Depends (sorry, writing skills don't lessen my sensory issues any) in my bathroom. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Moreover, you'll need to be dealing with the effects of my almost-inevitable difficulty with realtime communication with you. If I can't figure out language, you're going to need to find some way to divert me from whacking my head on things. You'll want to save both my head and the objects, because often the nearest object at hand is my portable keyboard and I tend to break them that way. They're expensive to replace, so you'll need to replace the one I broke so far. But if you touch me, I'm likely to lash out at you instead, and I might scream or throw things in the meantime anyway while frustrated about inability to come up with language around certain topics. I own a helmet, but you're going to have trouble getting it on me if your approach to doing so is too direct, so you're going to need to figure out a way to do that too. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| You'll also need to be able to determine if I want to do or say something but am unable to initiate the conversation required to do it. When this is going on, I look pretty much exactly like I do any other time, and may be sitting there staring straight ahead and rocking with no particular facial expression. It's your job to figure out which is which and avert the possible meltdowns that can occur if you guess wrong for too long in either direction. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| If you can't deal with hours of straight screaming when I do try to initiate things but can't get words out, you won't be too good at any of this. And then you'll have to guess whether the reason I'm screaming is that I'm hungry, tired, in pain, sick, thirsty, overloaded, wanting to do something, wanting not to do something, wanting you to do or not do something, startled, reminded of institutions, confused, having word-finding problems, or simply in the middle of reading another one of your letters to the Schafer Autism Report. And then you'll have to figure out what to do about it without making the situation worse. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| However, in FC users, it is more common for people to attempt to discredit their communication rather than their disabilities. Sue Rubin, an autistic woman with 2q37 deletion who started out using FC and eventually began typing independently, was described as such: | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Ms. Rubin is credited with an IQ of 133, well in to the genius range, yet remains unable to perform even the simplest self-care skills without prompting and assistance. She requires a 24-hour attendant and is guided wherever she goes by her facilitator. She communicates vocally at a 2-3 year-old level and her other skills seem correspondingly infantile. Untreated compulsive mannerisms interfere with her few functional behaviors. Despite the reported IQ of 133, and the claims that Ms. Rubin writes articles and speeches by typing with one finger, the movie reveals that she is unable to dial 911 on the telephone or be left unattended. Although the movie attributes these behavior problems to "autism," that attribution is inaccurate and misleading. Indeed, Ms. Rubin has been reportedly diagnosed with a deletion of chromosome 2q37, a specific known condition that produces a wide range of congential[sic] defects, including severe developmental disabilities (NLM/NIH). | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Numerous studies have been made attempting to "prove" that FC users are not truly communicating. Typically, they involve showing the facilitator and the disabled person pictures, which, unbeknownst to the facilitator, are different from each other, and testing the ability of the disabled people to name the picture they were shown using FC. This study design has been criticized by advocates of FC on several points. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Firstly, there is evidence that many FC users have word-finding difficulties and related issues making object naming an especially difficult form of communication. As many FC users likely rely on facilitator cues to assist with difficult tasks, this condition could explain how a person could be truly communicating at some times, but being influenced by the facilitator during studies of this sort. Just because facilitator influence has been proven to occur in these studies does not rule out the presence of true communication during other tasks. At http://home.vicnet.net.au/~dealcc/Spaut3.htm they have an excellent demonstration of both word-finding problems and automatic completions. Marco, an autistic teenager, is typing while carrying his facilitator's hand. He has just been given a black shirt while his facilitator was not present. He has already stated it was a "T-SHIRT" (an equally laborious task) and is trying to say the color. The words in all capitals are what he typed. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| "What color was it? " | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| BLUE | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| "Was it blue? | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| NO | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| "What color was it? " | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| BLUE | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| "Was it blue, Marco?" | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| NO | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| "What color was it? " | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| RED | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| "Was it red? " | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| NO | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| "What color was it? " | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| MAUVE | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| "Was it mauve? " | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| NO | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| "What color was it?" | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| BLACK | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| "Was it black?" | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| YES | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| This demonstrates both word-finding difficulties (very prominently) and automatic completions (once he types BL, it is hard to prevent from typing BLUE). There are ways to control for this difficulty. One is to use tests not requiring word finding, such as asking the person to FC "yes" or "no" in response to questions the facilitator doesn't know the answer to. Another is to check the person's answers, as demonstrated with Marco. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Secondly, some FC advocates have claimed that the presence of someone sceptical about FC makes true communication more difficult for many FC users. Although this sounds suspiciously convenient, non-FC using disabled people have described similar effects. The abovementioned Amanda Baggs wrote a long article, http://www.autistics.us/library/more-autistic.html , about ways in which an autistic person can appear to "regress" (quotations because she herself does not approve of that term) and described the following as one of the ways: | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| People Nearby | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| [Added 13 May, 2005] | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Autistic people can be sensitive in various ways to the presence of people: | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Becoming more able to do certain things when people are present. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Becoming less able to do certain things when people are present. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Becoming more able to do certain things when certain specific kinds of people are present. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Becoming less able to do certain things when certain specific kinds of people are present. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Changes in the amount or kind of people around can mean changes in abilities. There are some kinds of people where, immediately upon meeting them, I am incapable of using language. There are other kinds of people who seem to make language easier. This is true even if they are strangers. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||
| One could test whether presence of people skeptical about FC can influence communication ability. For example, one could try a test whereby (unbeknownst to anyone) sessions are recorded in which FC users are asked questions the facilitator is unaware of the answer for, by either people who believe FC is an accurate communication technique or people who believe FC is a hoax, and see if there is a significant difference. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||