Polly's pages (aka 'Donna Williams')

Ever the arty Autie

The ABC of valid facilitated communication – a tribute to Anne McDonald


Anne McDonald

My husband Chris and I went to dinner with Anne Mc Donald for several years. We went once a month and Anne was often the life of the party. Hard for some people to imagine given that Anne had almost no comprehensible verbal speech whatsoever. But what she could do was use a forced grimace for yes and an eye aversion for no. She had a letter board that she could aim at with a clenched fist to spell out the occassional gobsmacking one liners (completely with cheeky grin) and once in a while she’d surprise us with the occasional spoken word we could actually understand. Then, one day, this icon of the world of non-verbal communicators died just before her 50th birthday. The loss of Anne changed the whole atmosphere of the dinners. They were still great, Rosemary Crossley and Chris Borthwick are fun, educated, interesting people in their own right but Anne was probably the best communicator of all of us. She put all her energy into each directed strike on the letter board, and into each directed use of her yes/no tactics.

Tabloid media love judgement day and that’s just what Kirsten Veness of the ABC’s 7.30 report had in mind. And what better time to judge than after the person they’re attacking is more voiceless than ever on account they are now dead. But every person who ever went to dinner with Anne Mc Donald can now speak up for her, for who she was, an adult, socially equal to any other at those dinners, satirical, blunt, funny, eccentric, wilful, compassionate, driven.
I could talk about the many non-verbal people I’ve known who progressed through supported communication to independent typing… Birger Sellin, Tito Mukhopadhyay, Richard Attfield, Kayla Takeuchi, Larry Bissonnette, Sue Rubin, Carley Fleishman, Heather Barratt, Sydney Edmond, Lucy Blackman, Peyton Goddard, to name just a few of the most well known. And ANYONE can view these people, most are on YouTube. But of course why let facts get in the way of a good witch hunt.
As for whether physical support means the communication is not the person’s own, does this apply to verbal people? If you were dealing with trauma, grief and loss and I gently touched your shoulder as you fought your way through extreme emotion to communicate with me, would that mean my hand on your shoulder was controlling your words? Now if instead I touched your elbow, would that change things? Now if you were so out of control of your emotions, body, behaviour that you needed to type because you couldn’t speak, then if I touched your shoulder during this, would it mean I was controlling you? How about if I touched your elbow, or your wrist? If it were your own finger pressing each key, would that mean my support of your wrist controlled your communication? And if you were with another verbal person and they had facial expression and body language that influenced your communication, does that mean your communication was controlled by them, invalid, somehow dangerous and that we should call in welfare workers to rescuse you from all potential communication influences?

And who will pay for this 7.30 report witch hunt? Not only the adults who become denied communication devices or the facilitation they need to communicate around severe movement or impulse control disorders. We will lose those like the 6 years olds who now use iPads who started out facilitated and now type independently in an era less ignorant, phobic, controlling about who does and doesn’t get to try their hand at communication, the 15 year olds who started with facilitation with parents who themselves didn’t believe it possible but had the humanity and grace to suspend judgement and now have adult children who have progressed to independent typing, those severely aphasic adults so desperate to prove authorship they came to speak as they typed so nobody could ever again say it was never their typing.
Fact is, if therapists and care workers had to accept FC or even AAC, a lot of the hard liners would be extremely embarrassed about things they wrote in their theses, the ways they previously treated people with autism and many would find their much prized, highly financed rubber stamped ‘scientific’ techniques were suddenly ignorant, archaic, redundant self congratulatory exercises in academic self righteous pomposity.
Its time we questioned the hard liners about their vehement closed mindedness and hatred of AAC and FC…. what is it about THEIR investments, THEIR values, THEIR treatments, THEIR behaviors toward people with autism, THEIR financial investment in their business/practice, THEIR fears of equality, THEIR fear of having to adapt or learn a new skill, THEIR martyr attitudes in relation to disability that they are seeking to protect?
You can’t educate beef and you shouldn’t bother with trolls. We may call it mainstream media, but when it feeds off witch hunts by attacking the equality and humanity of dead people, then that’s a troll is a troll is a troll. Then all one can type is A.B…C…… FUCK YOU.

Those open minded enough to truly want to look at the facts on FC, here’s a few of them.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.

COMMENTS that were left on the FB page for the related 7.30 report program:

Peter Sibilant
I wonder how important our policy makers would think it was if it affected their own lives directly. Should we also ban driving because not everyone can do it well?

Les Cope
Its disgraceful that the ABC should link the NDIS to this story. It has nothing to do with the NDIS but more to do with Valid pursuing their negative and antiquated response to facilitated facilitation. The reports as to its usefulness are based on events that occurred over 20 years ago. The negative outcomes of ‘testing’ people with disabilities who have been subjected to social and emotional stigma has been well documented. Any professional keeping up with literature in this area should be well aware of this.

Leane Leggo Markham
So Anne’s mother says Anne McDonald couldn’t communicate and had the intellect of a young child? Rosemary Crossley must be a mastermind of the first degree to have fooled the education department, universities, Supreme Court and disability groups so comprehensively. Comparing Anne McDonald’s life with Leonie McFarlane, I know which one I would prefer. As to whether or not facilitated communication works, Tim Chan clearly shows us that it does.

Claire Stewart
I watched this story, I didn’t really understand the controversy. It may not be 100% accurate, but if you had a child that couldn’t communicate, wouldn’t you give anything a go? Worst case scenario: people are spending time with severely disabled people engaging in mentally stimulating activity. Parents/carers can then decide if it is worth continuing or if they wish to take a different course of action in developing the skills of the disabled person.

Les Cope

Facilitated facilitation has been so important to my own sons growth and gains in society. Without it he would not now be a writer, poet, artist and in control over what he wants to do with his life. He, like Annie McDonald 30+ years ago had ‘experts’ determining that he had the mind of a child. He has moved on. Some ‘experts’ have not.

Leane Leggo Markham
Well said Les and Claire. My son is 13, uses facilitated communication in his mainstream highschool and not one person at his school doubts that it is him communicating. I am so disappointed with the ABC and 7.30 and their reporting on this issue. It just didn’t seem to be very well thought out at all and considerably out of date. BTW what is Alan Hudson a professor of? Wasn’t he part of the team from St. Nicholas that Rosie and Anne were fighting back in the 80’s?

Alice Owen
It reminds of the terrible job Geraldine Doogue did on this subject in the 1990’s when she was with Life Matters – very poorly researched and no mention of any positive research from elsewhere -made it look like a local issue instead of a technique used internationally . Alan Hudson has a stated aim of Invalidating FCT -he is a psychologist with no skills or experience in AAC and has been trying to PROVE it cant be possible because he believes in IQ testing people with no speech no communication systems and severe movement difficulties and then declaring them intellectually disabled.

Matt Wilson ‎
7.30 report, did you do any research at all on this?
1) You might find something in court records about Anne McDonald successfully completing a message passing test in court in order to win her case in relation to invoking habeas corpus;
2) Secretary’s notes for the Eisen Committee Meeting, 6 July 1979 report validated message passing for Leonie – this was documented in Joan Dwyer’s article in The Australian Journal of Administrative Law, February 1996, v.3, No. 2, pp. 73-119. Yes, both Anne and Leonie’s communication were ‘validated’. Now leave them alone. If you had asked sensible questions you may have found out that DHS in Victoria has had ill feelings towards FC since it’s embarassment of the atrocities at St Nicholas were exposed. Gee, I wonder if VALID gets funding from DHS, maybe they’d use it towards running its conferences amongst other things? VALID released a position statement on FC, only after receiving public criticism about its appalling ‘advocacy’ re: Leonie. Outdated research from the 90’s. Why would a Department or advocacy group want to stop Leonie’s presentation though? Do you think it could be because the presentation painted the picture of the less than rosy life in govt run supported accommodation? Not a very good look for the Dept now is it? Did you ask Anne’s mum the last time she saw her daughter, and why she waited until after her daughter passed away to talk about her in such a way on national television? The only manipulation I see is from an advocacy group using parents to put them in the spotlight in an attempt to try and justify their actions and beliefs. You were played like a puppet 7.30. You briefly mentioned the review in Qld. Did you happen to notice this was instigated by a senior officer who just happened to previously work for DHS in Victoria? Do you intend to ask the Department of Communities why they paid Alan Hudson, on academic record since the early 90’s as being a skeptic, to come to Queensland to assess a person who uses FC? Do you intend asking them if a person qualified and registered in communication assessment was also involved? Mr Hudson’s involvement probably was not due to the collegiate relationship between the senior officer and Alan Hudson , but it would be interesting to know why the did not use more suitably trained professionals in Qld to undertake the review? I mean, who better to justify your beliefs that someone can’t communicate than a retired psychologist on academic record as a skeptic? At the end of the day, Dept of Communities removed someones communication system due to antiquated personal beliefs – shameful That Seth character is even worse at analysing communication skills than he is at advocacy. Seth reports the scenario of – “”Can you please hit the yes switch for me? No. OK. Try again. Can you please hit the yes switch for me? No.” If you had only a yes/no switch, what would you answer if you did not want to participate in the testing. Who can blame her. Come on 7.30, maybe its time you employed some real journalists?

Les Cope Matt.
I also considered Leonie’s response to hitting the no button twice to be clear. She did not want to play the testing game with people who doubted her potential for communication. That aside, she did hit the switch after being asked to. A clear NO Seth. Not once but TWICE.
ABC lift your game and have journalists that are going to report, respond and evaluate all of the facts clearly. I thought for a moment I was viewing channels 7, 9 or 10. Disappointed Auntie…

Matt Wilson
If you go to this page, you’ll see some pretty cool videos. The video at the top – Here we are world: a conversation among friends, is one of my faves http://soe.syr.edu/centers_institutes/institute_communication_inclusion/about_the_ici/Videos.aspx

Dr Crossley spoke of people who have been able to speak later in life after typing using FC. Here’s a couple of those people http://www.youtube.com/watch?v=2FlIyJJRc0E

Mitch Leggo
Have asserted asserted that reading these comments darfanately a time for everyone teaches way to communicte.

Rachael Gavin
Shall we put all the people who have been able to speak later in life thanks to FC, Oh hang on Matt it may take up too much room on the system. And I agree guys on Leonie’s response, she gave the correct answer not once but twice, 7.30 it may pay to see what is going on around the world with FC at the moment……. then do another more researched report.

Chris Borthwick
Can I express my extreme disappointment at seeing Anne McDonald, my friend of thirty years, attacked almost without redress? She’d done test after test, poor woman, and none of them were enough for her critics: http://www.annemcdonaldcentre.org.au/anne-proving-i-exist. She did a test on 60 Minutes, dammit, in front of her parents, and passed; but, again, that wasn’t enough. She got a degree, and a National Disability Award, and that wasn’t enough. People with severe disabilities apparently have to prove themselves over and over to anybody who asks them, every day of their lives. And it’ll still never be enough.
Anne – Proving I exist | Anne McDonald Centre
These words do not exist. I do not exist. Critics of Facilitated Communication…
Anne – Proving I exist | Anne McDonald Centre
These words do not exist. I do not exist. Critics of Facilitated Communication…See More

Gail Iris
Gillingham Wylie Shame, shame, shame on you all. You don’t know the damage you are doing and the many, many voices you are silencing through this type of reporting. I weep for the children and the adults while I look at you in absolute disgust!!!!

Emmy Elbaum ‎
Would any one dream of taking away braille from the visually impaired? Would anyone dream of silencing verbal people because they have been misquoted or worse their communication intentionally or unintenionally misrepresented? Why then is it ok to take away a person’s voice (their choice of Augmentative Communication ) when they can not communicate verbally? Some people on this 7:30 report were advocating for exactly this action. Does this make common sense? Isn’t it blatant discrimination against the most disadvantaged people in our community. Makes me cry.
How about some truthful reporting so the issues can be fairly represented by people who deeply understand.

Megan Marie Miller
I think the issue is that there are a lot of studies to show that people using truly facilitated communication where they have to have someone touching them or standing very near to them are not typing on their own, in fact the person touching them is guiding them. I don’t know of a person out there who is against augmented communication when you teach someone to type or work the device completely on their own. If the person can only operate it with someone touching them, it is hard to know who is actually typing. Maybe research will show someday a reason for needing the person there beyond that the person is doing the communicating but the current research shows that the facilitator is most often the communicator.

Lisa Edmond
Ms. Miller, that is only the case when the facilitator is improperly supporting the individual using AAC. I suggest you do more reading on the subject.

Megan Marie Miller
I have read and researched the subject extensively. Studies have shown even when the facilitator thinks he/she is supporting without doing the communication, activities to measure who was communicating showed it was the facilitator. I would hope everyone can agree that it is better for the person to communicate than someone else to do it for them. Opponents of FC do support teaching communication. They do not support having the communicator rely on someone else to do the communication as it is difficult to tell who is communicating. If you have recommendations for additional reading I would love to read it. Especially if there are any that respond to the studies that have been done that show the facilitator is the on communicating or the horrible experiences that families went through where husbands were put in jail because the facilitators communicated that the person was being abused yet when tests were done to see who was communicating it turned out to be the facilitator

Lisa Edmond
You could begin by reading research on the website of Syracuse University: http://soe.syr.edu/centers_institutes/institute_communication_inclusion/Research/authorship_and_controversy.aspx . To see FC in use, some excellent documentaries available for viewing at your convenience: ‘Autism is a World’ (about Sue Rubin), ‘Wretches & Jabberers’ (about Larry Bissonnette and Tracy Thresher), ‘Inside the Edge – A Journey to Using Spech Through Typing’ (about Jamie Burke and his newfound ability to communicate through speech after many years of using FC), and ‘My Name is Sydney’ (about poet, Sydney Edmond).

Megan Marie Miller
I have seen wretches and jabbers i will check out the other resources thank you. I do think it is important to distinguish between people typing and using aug devices by themselves as did some or most of the people in wretches and jabbers, teaching people to communicate on their own by prompting and teaching how to use the devices, and people needing to rely on a facilitator (meaning without the facilitator they cant communicate). The first two allow for independent functional communication whereas the third requires people to depend on someone else and again you dont know who is communicating.

Anneliese Hastings
I have 30 years of experience as a speech and language pathologist. I have cared for many individuals who have autism. I HAVE to think in terms of evidence – based approaches and yet I would like to keep an open mind about FC. But not all FC as a blanket approval – more the possibility that a particular individual may still benefit. But gee, there is a lot of counter evidence…

Lisa Edmond
Anneliese, having worked on communication with students for 30 years, I am a bit stunned that you haven’t personally experienced using FC, RPM, or some form of AAC with any of your pupils??? Then you would have the evidence right at your fingertips.

Donna Williams
Hi Megan, so if you were dealing with trauma, grief and loss and I gently touched your shoulder as you fought your way through extreme emotion to communicate with me, would that mean my hand on your shoulder was controlling your words? Now if instead I touched your elbow, would that change things? Now if you were so out of control of your emotions, body, behaviour that you needed to type because you couldn’t speak, then if I touched your shoulder during this, would it mean I was controlling you? How about if I touched your elbow, or your wrist? If it were your own finger pressing each key, would that mean my support of your wrist controlled your communication? And if you were with another verbal person and they had facial expression and body language that influenced your communication, does that mean your communication was controlled by them, invalid, somehow dangerous and that we should call in welfare workers to rescuse you from all potential communication influences?

Donna Williams
For Michelle. Extensive references at the end of this page.

Fact is, if therapists and care workers had to accept FC or even AAC, a lot of the hard liners would be extremely embarrassed about things they wrote in their theses, the ways they previously treated people with autism and many would find their much prized, highly financed rubber stamped ‘scientific’ techniques were suddenly ignorant, archaic, redundant self congratulatory exercises in academic self righteous pomposity. its time we QUESTIONED THE HARD LINERS ABOUT THEIR VEHEMENT HATRED OF AAC AND FC…. what is it about THEIR investments, THEIR values, THEIR treatments, THEIR behaviours toward people with autism, THEIR financial investment in their business/practice, THEIR fears of equality, THEIR fear of having to adapt or learn a new skill, THEIR martyr attitudes in relation to disability that they are seeking to protect? After all, if after 10 years in intensive ABA going nowhere then that person typing communicates they can’t control their involuntary behaviours, what does this say about $60,000 a year for ABA? What’s the therapists defence? My science is better than your science?

Megan Marie Miller
i will look into the references thank you. If the only way i could communicate was with someone touching me all the time, i would say it is not functional communication. If the person touched me while i typed i would say it is not clear if i am moving my hand completely on my own or if the person is guiding me. I would much prefer to communicate completely on my own. If i needed that person initially to teach me and help me cope with my trauma, that would be fine but what if i wanted to communicate and that person wasnt around and the only way i had learned how to do it was with them sitting there or touching me? Prompt dependence is a well documented issue when teaching anyone. If any of the children i teach or help cannot do anything unless i am sitting there, i do not consider the skill mastered. I want them to learn to do it independently and without me. I dont have a hatred for fc. I dont thinik anyone has a hatred for ACC. I also ask you to imagine being a parent of a child who cannot communicate and then a facilitator is hired and paid money to help your child communicate. At last your child says i love you, writes amazing poetry, and then accuses you of sexually abusing him. You have done nothing but love and care for this child and now you are going to jail because of this. The fc evidence is used as the only evidence in court and it is never questioned or put to any scientific inquiry and you go to jail. Months later science is put to the test and not a single study can support that the child is in fact the one communicating and it turns out it was unknowingly the facilitator the whole time? When an intervention has something as drastic as that occurring in numerous situations, i think it is wise and cautious to be a bit skeptical and demand research to show its effectiveness. As for ABA not being effective with the child. ABA is the science of learning and is based on research. If a person does not make progress while receiving this intervention, it is not the science that is flawed. It is the person applying the techniques. Sometimes th person is not competent just as in any field. Sometimes the person is competent but there are factors that he or she has not figured out. Interestingly enough, when behavioral techniques are used to teach someone to communicate using AAC, they are much more likely to be able to use the device independently than with assistance.

Donna Williams
Hi Megan, I, like you, am extremely autonomous, self owning… I developed typed speech alongside functional verbal speech between 9-11 yrs old. I was really amazed to work with DPD in kids and adults with autism because I’d do anything to stop people helping me, so it was odd to me. But what I did relate to was involuntary avoidance, diversion, retaliation responses in Exposure Anxiety which I often saw in over 1000 autistic clients since 1996. I had tourette’s since 2, OCD at 9 and was dissociated with stereotypies since probably 2 (I was dx’d as psychotic at age 2, in 1965). By age 3 I had ’emotional fits’ several times a day which may have been seizure activity (dx’d with atypical epilepsy in my 20s) but what this built was progressive addiction to self protection to the degree I had little voluntary control over constant avoidance, diversion, retaliation responses. So you can imagine trying to rely on what was already only echolalia due to visual-verbal agnosias, then added to that the confusion of vocal/verbal tics in Tourettes, the cutting off from body of chronic dissociation and the chaos of compulsive avoidance, diversion, retaliation responses. What drove me to desperately strive to gain functional speech was that I was enduring unbearable abuse I couldn’t tell anyone about and I knew that if I didn’t learn to make myself understood, nobody could help me. But hearing my own voice so grated on me, felt so threatening, it caused selective mutism, so then I had to fight through that too. Now I was not one to be comforted by help, but luckily I was left a typewriter and over 2 years went from typing letter strings to word lists, then poetry by age 13. Typed speech was essential to me gaining awareness I was intelligent, sane, communicative. I didn’t have facilitation in typing but if anyone had tried to sit next to me and get me to type they’d have got nothing, so perhaps they’d have had to work through FC for me to get to independence WITH THEM. I didn’t have FC but I did get physical patterning for most things because with visual agnosias I couldn’t watch then do very well, but could get physically patterned. So for me, FC is merely another case of physical patterning, the point of which is to progressively fade out support, and I have seen this in many cases with FC, so I find it very worrying that with the high level of abuse of non verbal people that anyone would rather fight to stop them developing typed communication than help them with it, then help those who can, adapt to faded support.

Nora Watts
I’ve read so many words written by people who are unable to communicate except in the simplest terms. They are all very real, telling things only a personal experience with ASD would know. I can see why they doubt but this is not the Loch Ness monster. There are also cases of kids who manage to learn to read and type by themselves. They are sometimes pretty sophisticated in their “speech” Some people are more comfortable with ASD people as low IQ people. Nora Watts Humans should be clever enough to prove or disprove something so simple.

Megan Marie Miller
I agree that we should work to teach everyone to communicate independently in whatever form works for them: typing, signs, gestures, pictures, writing, dancing, etc The issue I have with true FC is the need for a facilitator. FC may have progressed to the point now where the facilitator is faded out for some folks but in most cases the argument is that the facilitator is necessary for communication to occur. To me, that is not true communication. Fading the person out is not true FC, it is teaching. It is prompting. It is what behavior analysts have done for years (not people claiming to do ABA who have no idea about the science and actual analysis part but real behavior analysts who studied only that topic in school). I hope everyone on here understands that people who are against FC are NOT against TEACHING alternative forms of communication, they are against reliance on a facilitator to do it.

Donna Williams
Hi Megan, it is obviously very hard for those with severe impulse control issues to experience expressive freedom through FC then develop enough impulse control to cope well with the fading of support… especially if they have Dependent Personality Disorder (DPD)… because loss of that support means THEY don’t have control of the CARER!!! the FACILITATOR… ironic, huh! Turning around severe entrenched DPD in a 15 or 25 year old is extremely hard and some do make it, others not at all. But with DPD the person has an immense need to avoid independent action and tie up the carer to being a tool for them… so we should lobby perhaps for the freedom of co-dependent facilitators! Others, however, have other issues like severe tourette’s, OCD or Exposure Anxiety but not DPD. With EA once one is addicted to one’s own adrenaline, anything that rocks the boat triggering awareness of one’s own connection to communication, the body, interaction with others, triggers the involuntary avoidance, diversion, retaliation responses of EA… I finally kicked most of the beast via a combination of diet (salicylate intolerance was increasing the agitation/wildness), supplements like omega 3s as a mood leveler and 10 years on medication for mood, anxiety, compulsive disorders stopped the constant looping/reinforcement of life long EA patterns, allowing me the ability to finally override that crap… but many with severe EA don’t make it that far… yet, we really need to understand why some people need support to override impulse control disorders and why fading has more success with some than others whilst recognising some conditions mean the person is actually controlling the facilitator not the other way, and in my work as a consultant it is that that I try and help people with… I try and help them reduce the EA, the DPD, the Separation Anxiety Disorder (SAD) is these are underpinning difficulty coping with fading. So its more constructive to look at how to make FC more practical and healthy for both communicator and facilitator in the progress to independent typing than to simply point blank hate FC or presume the only reason people use it is because of the wishful thinking of a facilitator or severe mental retardation in what are often people with severe movement/communication/impulse control disorders, often coinciding with mood/anxiety/compulsive/dissociative disorders and sometimes PDs like DPD, AvPD, Schizotypal/Schizoid PDs etc.


Facts About Facilitated Communication
by Douglas Biklen
from http://www.autism-resources.com/papers/facts_about_FC


The idea is never to guide the person to a selection. In
facilitation a parent, friend, teacher, speech language clinician or
other communication partner provides physical and emotional support
as the person with a communication disability tries to point in order
to communicate. The method can involve pointing at pictures or
letters. The physical support may include: assistance in isolating
the index finger; stabilizing the arm to overcome tremor; backward
resistance on the arm to slow the pace of pointing or to overcome
impulsiveness; a touch of the forearm, elbow, or shoulder to help the
person initiate typing; or pulling back on the arm or wrist to help
the person not strike a target repetitively. Emotional support
involves providing encouragement but not direction.


Controlled studies (e.g. Intellectual Disabilities Review Panel,
1989; Calculator & Singer, 1992; Velazquez, in press), observational
studies (Biklen, 1990 and 1993; Attwood & Remington Gurney, 1992) and
autobiographical accounts (e.g. Eastham, 1992; Oppenheim, 1974;
Nolan, 1987; and Crossley & McDonald, 1980) provide evidence that the
method works. One explanation why some researchers (e.g. Wheeler et
al, 1993; Szempruch et al, in press) have failed to replicate these
positive results could be that their tests are not valid.
Before discounting the potential competence of individuals with
disabilities, researchers have the obligation to question the
competence of their research designs.


Influence definitely can occur (see, for example, Biklen, 1990;
Biklen, 1992; Biklen 1993; and Intellectual Disability Review Panel
[IDRP], 1989). The IDRP study (1989) demonstrated that an individual
who was able to type uninfluenced communication could also be
susceptible to influence. *Hence it is important for facilitators to
monitor themselves and work to minimize influence* (Schubert &
Biklen, 1993). But, the fact that a person may be subject to
facilitator influence does not automatically indicate that the person
is not capable of uninfluenced communication!


There is no need to prejudge a person’s ability until it has been
demonstrated. Indeed, many people who have expressed extreme
skepticism about the method have subsequently been successful with it
(Schneiderman in 1993). Nevertheless, we have noted that as
with any instructional situation, it is important for the
facilitator/teacher to express confidence in the individual’s ability
to succeed with the method, much as a coach expresses confidence in a
person’s ability to learn a new sport or as a teacher exudes optimism
that a young student can learn to read or do math problems.


When introducing a person to facilitation for the first time, it
is valuable not to be testing the individual, allowing a the person
time to build his or her confidence with the new means of
communicating. This does not mean that it is not possible to test
facilitated communication. Clearly, for the method to gain wide
acceptance, it must be examined rigorously through many kinds of
tests and research. It is gratifying that despite the potential
problem that research tests could intrude upon and upset the
communication process, researchers are achieving success in
controlled studies (IDRP, 1989; Vazquez, in press; Calculator &
Singer, 1992), and in observational ones (Attwood & Remington-Gurney,
1992). While our own research is comprised mainly of long term
observational studies (Biklen et al, 1992; Biklen & Schubert, 1991),
some researchers at the Facilitated Communication Institute are now
beginning to design controlled experiments as well.


Facilitated communication is known to have been used at least
three decades ago (see Oppenheim, 1974) and was discovered
independently in Sweden (see account in Schawlow & Schawlow, 1985),
Canada (Eastham, 1992), Denmark (Johnson, 1988), Australia (Crossley
& McDonald, 1980), and the U.S. (Oppenheim, 1974; Schawlow &
Schawlow, 1985; L. v. Board of Education, 1990; Berger, 1992). Only
recently has the method spread widely; this has occasioned active
debate about the method.


Some individuals have made allegations of abuse, but there is no
evidence that the numbers of allegations by individuals using
facilitation is proportionally different than the numbers of
allegations made by speaking people. In a survey made at the SUNY
Health Sciences Center, it was found for a given time period that of
6 case in which individuals alleged they had been sexually abused,
for 4 of them there was physical evidence they had been abused
(Botash, 1993). Cases can lead to court convictions (Randall, 1993)
and/or confessions by the accused. As with allegations made by the
nondisabled population, some allegations may be unfounded and others
simply impossible to prove.


In an investigation, a second facilitator could be brought in to
provide facilitation. If the person repeats his or her allegation
with the same or similar details, this would indicate that the
allegation originates with the person who uses facilitation to


Testimony was given in an abuse case in Wichita Kansas; a jury
found the accused guilty (Randall in Wichita Eagle, March 30 and 31,
1993). Also, the Supreme Court Appellate Division in New York state
ruled that testimony given by such alternative means must be
evaluated in each individual case (In the Matter of Luz P., Opinion &
Order, January 14, 1993; Martin, 1993); to prove her competence to be
a witness in her own case, Luz P. took and passed tests verifying her
ability to communicate her own thoughts through facilitation (see
Martin, “Facilitation theory tested”, The Times Herald Record, July
31, 1993.)


It is important for potential facilitators to learn about the
particular physical problems the method is intended to address; it is
useful for new facilitators to practice technique, to learn how to
monitor the person’s eyes on the target, to teach finger isolation,
pacing and other skills associated with working toward independent
typing, to formulate getting-started activities and to work on fading
physical support. Facilitators must also learn how to foster control
by the person with the communication impairment over his or her
typing, and to avoid facilitator influence, whether physical
influence or verbal influence (e.g. completing sentences for the
person, anticipating next letters and words).


Some teachers and some parents seem to pick up the method
quickly; for others it takes longer to learn. But many parents and
teachers for whom it was initially difficult have been able to learn
the method and to achieve confidence in their ability with it.


People do need to know how to read in order to be able to type
out words. Interestingly, many people now using facilitated
communication have already learned how to read but have had no means
of showing that ability until they could type. Not surprisingly,
individuals who use facilitated communication reveal varying literacy
skills. If individuals cannot read, they can be introduced to
facilitation in which they point to pictures. The manner of teaching
them reading would be the same as for people who can speak.


People who use facilitated communication may also continue to
work on developing their speech; some people can say the words or
letters they are about to type and some can speak a sentence that
they have typed, even though they may be unable to carry on an open
ended conversation. Others may continue to develop proficiency with
manual communication. And certainly, using facilitated communication
does not preclude learning other skills, such as independent living
or employment related skills.


The method *may* be useful for any individuals who cannot speak
or whose speech is highly echoed or in other ways limited and who
cannot point independently *and* reliably. But we have not selected
a random group of people classified as autistic or developmentally
disabled and tried the method with them, so we cannot say with what
percentage it might work. Based on our experience, however, we
believe that the method will be found to be useful for most people
who have difficulties with speech and who cannot point reliably.


As with any method, it may not be effective with some persons and
will predictably have varying success with others. Success may be
related to neurological factors (e.g. tremor, low and high muscle
tone, lack of proprioceptive awareness) and to socio-emotional
factors such as amount and nature of support, educational experience,
and opportunities to practice.


People vary in their communicative skills. Not surprisingly,
individuals who share the same facilitator(s) demonstrate different
levels of fluency as well as personal concerns or themes, distinctive
phraseology or expressions, and other stylistic differences.


Since confidence plays a big part in a person’s success, changing
facilitators may involve a period of adjustment and building or
rebuilding of confidence.


It is a means of communicating, not a cure.


Already some individuals in the U.S. and many more in Australia
have demonstrated that they can learn to type independently. Because
independent typing is a realizable goal, Rosemary Crossley has
referred to the method as “Facilitated communication training.”


The same neurological problems that make reliable independent
pointing and speaking difficult may also affect other behavior, for
example toileting. The fact that a person can type letters and thus
communicate does not logically mean that all other difficulties would
be eradicated, particularly if these involve stereotypies or
obsessive compulsive behavior. At the same time, some people improve
in these areas as their expressive communication developed.


The issue is not whether a person can point, but whether he or she
can do so reliably, that is on demand, for multiple step tasks as
well as one-step ones. It is well known that there are neurological
reasons other than intellect to explain why multiple step tasks might
be difficult for people with developmental disabilities (see Kelso &
Tuller, 1981; Miller, 1985; Maurer, 1992). Recent studies in the
field of autism (e.g. Courchesne, 1993; Bauman in ASA, 1993) as well
as in spina bifida, Down syndrome, Williams syndrome, Joubert
syndrome, and hydrocephalus (see Leiner et al, 1991; Ziegler, 1990;
and Bordarier & Aicardi, 1990) identify cerebellar abnormalities. It
is known that the cerebellum plays an important role in regulating
complex motor tasks. The idea of facilitation is to help individuals
overcome particular difficulties with motor tasks. Over time, with
practice and with improved confidence, individuals are expected to
become able to type reliably, without a facilitator.

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Stephen Drake Phone:(315)443-3702
Facilitated Communication Institute
Syracuse University Bitnet:sndrake@sued.bitnet
364 Huntington Hall
Syracuse, NY 13244 Internet:sndrake@sued.syr.edu