1. Description of Sample Characteristics
I am well aware of the scepticism which arises in connection with enthusiastic reports about FC and autism. Downscaling comments such as, "under those conditions...", "with those autistic persons...... "or "in such a case"...... reveal the need for a clear description of the conditions under which FC has shown to be a suitable method.
First of all I'd like to point out that the experiences I will refer to in my presentation have been gathered throughout my work as a therapist in an out-patient treatment center for autistic persons in Saarlouis, Germany. This center, "Hilfe fúr das autistische Kind" (Help for the Autistic Child) is run by the regional chapter of the parent association which is a member of the German Federal Association bearing the same name.
We usually work with the autistic clients two to four times per week on an individual basis; the sessions mostly being conducted in the center.
We presently serve 43 autistic clients of various ages: four are under 5 years old, 16 are between 6 and 10 years old, 15 are between 11 and 15 years, 5 are between 16 and 20 years, and four are older than 20 years. More than half of our clients are nonverbal; four speak fluently; the remainder vary in their use of speech from singleword utterances to simple phrases. The sex ratio of male to female is 2:1.
Presently, 31 clients attend a school. Of these, 27 are students at schools for the mentally retarded, two attend schools for learning disabled students, and two follow the regular curriculum at a special school for the physically handicapped. The four adults in our group have formally been students at schools for the mentally retarded.
As you can see from these
statistics, we serve predominantly younger persons whose assumed
niveaus regarding their mental and verbal competencies are certainly
not above average.
2. State of Experience
with FC
We started using FC about three years ago with one of our autistic clients. Since then we have tried this method with another 21 persons. Considering that FC also encompasses pointing to pictures or cards as communicative responses, we can claim that the efforts were successful in every single case. However, 17 of these 21 communicate freely through this method, using FC to spell out their opinions and to write about personal topics without being asked probing questions.
For various reasons we have not yet started FC with the remaining 22 clients served in our center.
In some cases one therapy session was sufficient to break through whereas in several cases it took more than half a year to receive a clear response. The generalisation to other facilitators varied in a similar fashion if it was successful at all.
In all cases FC was initiated within the therapy; sometimes a simultaneous effort was made in other contexts such as school or home. In 9 out of 21 cases it was possible to transfer the method to both contexts (home environment and school or other institutions); in two cases transfer was only successfully accomplished to one other setting. We encountered a deadlock in one case where previously responses to "Yes/No" questions had been possible. In some other cases we found that after a facilitator change the clients' responses did not reach the same level as formerly achieved.
In neither case has it yet been possible to totally fade out the facilitation. It was also not successful to fully retract physical support during the production of a message. For some clients it is sufficient to be facilitated at the elbow, but even with these the need for support varies with the situations and topics.
Out of the six therapists
who are presently working at our center, five use the method of
FC with several autistic persons while another colleague is just
beginning to use this method.
I have personal experience
with 15 of the 21 FC users. Nine of these I facilitate on a regular
basis.
3. Evaluation of Several
Aspects of FC
It is beyond the scope of
this presentation to address all possible topics and to discuss
them in detail. It is my goal here to point out that despite
the relatively simple technique of FC a variety of other elements
play a crucial role in the process. The success of FC depends
on far more factors than the pure technical or mental competencies
of the facilitated person.
3.1 What seems to be
important in the beginning situation?
To work from a profound basis it is useful to not only provide detailed information about the method but to also conduct interviews with caretakers of the autistic individual. In these interviews we look for moments in which the client has surprised others with his grasp of a complex situation, or in in which he has responded to an unusual direction given by the future facilitator. We also obtain information on the client's interest in written matter. Thus we try to find out whether and why others have always had the impression that the respective individual seemed to understand clearly more than he indicated through his reactions. This is done to clear the way for a recognition of the client's potentials. Such a recognition is crucial in order to successfully get through the initial stage.
Of course, all people involved have to be extensively briefed about the possibilities and problems associated with this method as well as about possible approaches, phases, and goals. It is best to from the beginning include the broader social environment in this information stage. This turns the undertaking into a common effort which has several advantages. First, in addition to the natural own doubts one does not have to be burdened with having to prove the findings to others. Second, it is possible to keep a consistent attitude towards the facilitated person across settings.
Also the person who will be offered the intervention has all rights to be included in the planning. For him or her it may come as a surprise and may be associated with anxiety and perceived as a risk.
It is advantageous to try to initiate the process from different sides at once. This eases the transfer or makes it even unnecessary. It also provides opportunities for the different facilitators to support each other and takes pressure away from the individual attempts at FC. If such an approach is not possible it is advisable to include other people in the process as soon as first successes have been established.
It has proven useful to set clear time-limits for the first trials; these should be determined before the sessions begin and they should be clear to both parties involved. This leaves the facilitator with the possibility to keep his back clear, to use his patience economically, and to stop without having to have a bad conscious. With regard to the facilitated individual it prevents him or her from feeling like having lost the one and only chance if it has not worked the first time.
In this initial phase it is crucial to document in greatest detail all questions, comments, or actions as well as which reactions were produced by which triggers. Such a documentation can reveal where exactly problems arise, how one could facilitate further progress, whether there are differences from day to day or between facilitators. But most of all such notes can be an enormous help and reassurance in times when the communication does not go so smoothly.
For example, only with
the help of detailed documentation was it possible to discover
that J. was very well able to discriminate between two pictures
regardless of the complexity of our questions. He was also able
to associate the pictures with their written lables. However,
when we offered him letter cards and asked him to indicate the
one with which the word begins he seemed unable to choose correctly.
Only after quite a while did we realize the difference in size
between the larger pictures and lables and the small letter cards.
We related this diference to J.'s inconsistent responses and
found that J.'s reactions were not a function of the distance
between the cards but of their size. When presented with too
small items J. had no chance of responding correctly. Thus he
opted to not react at all or to give a neutral response by pointing
in between the two cards.
3.2 What about fading back
the facilitation?
The results with trying to fade out the facilitation vary greatly. One reason for this may certainly be related to the different motor problems the FC users exhibit.
However, a considerable lack of a systematic approach can just as much be held responsable for this variability.
Technically there are several factors that need to be treated in different ways according to individual needs when facilitating. Thus there is one group of people for whom it is important to be given clear resistance throughout parts or all of their movement. Another group relies more on the prominent upward pulling of the hand while yet another need feedback in oder to clearly discriminate their movements. Other facilitated persons need mostly help to prevent perseverative movements. Such variability allows to draw conclusions about differences in motor problems such as deviations in muscle tone, difficulties with initiation and differentiation of motor reactions, etc. These specific problems have to be taken into consideration when fading back the facilitation.
For a systematic approach it is important to begin fading back as soon as the initial phase is completed. This step has to be discussed with the facilitated individual right at the beginning which offers the advantage that it can be done within a neutral atmosphere. It happens too often that people wait too long and then suddenly try to fade back when they are plagued with doubts or when they need to prove the success to others. In addition to creating a certain failure, such an attempt disturbs the relationship with the facilitated individual. Within this context I'd like to point out how much our facilitating diminishes in quality when we suddenly become uncertain. It would be unfair to make the facilitated person responsable for a failure in such a situation. Furthermore, by giving early warning about the planned fading one prevents establishing an inflexible habit of how the facilitation is to be done -- and this concerns both parties involved.
Once the reduction of support has been tried, continuous efforts should be undertaken to turn this attempt into a success. There may be times when the content of the messages is more important than the goal of leading towards independency, but we should never forget that independency is the ultimate goal. We cannot reproach the facilitated person for seeking as much support as possible; it is our duty to reduce the dependency to a minimum.
In general, we have found that considerably more support is called for when the messages deal with emotionally difficult content, regardless of how this "more of support" looks like (e.g., stronger resistance, clearer pulling-back, facilitating closer at the hand, staying with it inspite of mistakes). Therefore it is logical that one needs to select anxiety-free topics when exercising reduction of facilitation.
We have already learned from
these mistakes but still we are confronted every day with the
difficulty of continuously moving forward within this area.
3.3 How can we generalize
the use of FC to different situations and different facilitators?
From the previous point we can already conclude that it is best to start FC with several facilitators at once in order to prevent the problems of transfer. It is much easier to include another facilitator in an already established group of facilitators than to try to transfer the achievements with FC to a second or third person after a single facilitator has reached a considerable niveau with the facilitated individual.
However, such optimal conditions are seldom encountered. Thus it seems appropriate to emphasize the following considerations.
Communicating via FC calls for a certain attitude which needs to come genuinely from within the facilitator. (Incompetency of the facilitated individual should only be the last possible explanation for an observed failure to communicate.) Thus it proves important to prepare the candidate by providing sufficient training and information and sensitizing the future facilitator for the possibility of using FC with this certain individual. However, the facilitator should never be pushed and always be given time until he or she takes up FC out of his/her own conviction.
I have supported novice facilitators on several occasions through staying with them in the room, possibly facilitating together, or providing moral support and encouragement to the facilitated individual. However, I have clearly had more positive experiences with leaving the dyad alone during this initial phase trying to work out their own individual way with each other. It was important to continually keep each other updated on the progress and to carry on with practical training of the technique, ways of questionning, etc. Anyway, it cannot be emphasized enough how essential it is to begin without pressure. At this point I'd like to once again remind of the need to set time-limits for the initial trials.
Another crucial point is the clarification of the objective: In which setting does the communication take place, and what is called for in that situation? In every-day communication it is often simple decisions or clarifications that need to be made; at school the reproduction or examination of knowledge is called for. All these topics can be dealt with in a brief manner without having to make complex statements. It happens too often that transfer of FC to other settings is hampered by fix expectations that the autistic individual produce elaborate statements. However, our experience has shown that it is possible to sucessfully transfer an individual's ability to use FC to schools where different persons are implemented as facilitators.
In sum, we can conclude: generalisation should be arranged as soon as possible, carried out with the least possible pressure, and should initially be confined to as simple a form of communication as possible. All the remainder will follow with ease.
That leaves only the issue
of exchanging information. In the initial phase I feel this is
a very important point. Different facilitators need to compare:
Do the processes follow similar patterns? Does the facilitated
individual make new steps in a certain setting? Can we discern
connections with other settings? Do we altogether make progress?
However, after the initial phase the exchange of information
needs to be reduced to a minimum in order to ensure normality
of the communication, whether facilitated or not.
3.4 What kinds of inherent problems in communicating with FC do we have, and how can we manage them?
Communicating via FC frequently fills a relative vacuum. Of course, autistic persons have many other ways to communicate. However, these often lack the possibility of communicating such contents in such a detailed fashion and individual style as has become possible through FC.
Therefore it is normal that problems arise: We are confronted with a "new" person and must learn anew to come to terms with this person on many issues. We must learn to accept evaluations from someone we never have expected to evaluate us. These changes need time. They also call for a new attitude towards this person, a task that is sometimes made very difficult by the behavior the individual exhibits. It is these problems that repeatedly make us aware that not the implementation of a new method is the difficulty, but rather the challenges that come with the newly opened-up possibilities.
In my previous remarks I have already stressed the importance of defining objectives as they regard contents. One has to differentiate between persons, settings, and acute situations. Communication is very easily blocked by wrong expectations.
Communication via FC also bears specific problems as far as technique is concerned.
The statements are usually recorded in writing. Thus they stay on the paper, "black on white", even the next day. This makes them have the effect of a letter rather than of an oral conversation. Compared to spoken messages, they are produced in a much slower fashion which again impacts their effect. In addition, many persons with autism use a very excentric kind of language, not conforming to the "norm" in their use of words and grammar.
When such special styles are observed one has to find out whether they are purposefully produced or whether they only appear when a certain facilitator is working with the client. Furthermore, it usually takes time to adjust to these new facts. Without doubt many crises have their roots in these special characteristics of the messages. Therefore it is important to become aware of them in order to be able to come to terms with them. It would be a pity, however, if we got too used to them and prevented us from being enriched by these unusual qualities.
Certainly, especially when
only a few facilitators are working with the client, messages
are passed on to third parties. Passing on information from conversations
can cause problems under normal circumstances, and it is even
more explosive within the context of FC. The suspicion of the
third person that the message may have been influenced by the
facilitator can linger for a long time, especially if the statement
has a negative or accusing content. Also, the thought of having
to pass on information obtained through FC can burden the facilitator
and produce a negative impact on the relationship with the client.
It is the question whether it makes sense and should be the task
of the facilitatior to forward information at all. If so it may
be helpful to wait some time and find out whether the messages
seem to be as explosive at a later point in time. In addition
one should not interpret all reactions of the third party as calling
into doubt the own person or the method.
3.5 What about authenticity?
After more than a thousand hours of communication via FC you can hardly expect me to doubt the authenticity of the messages. Such doubts would endanger my mental stability; however, "my" autistic clients would also revolt. Nevertheless, dealing with this subject is still important to me, because in my daily work with this method I continue to encounter comments of assurance as well as of doubt.
The studies that aroused most interest in the USA, Australia and the Federal Republik of Germany are those that have been done in connection with court trials of sexual abuse. Their objective -- devaluating the FC-- produced statements by calling the method into doubt -- calls for respective precautions when evaluating the results. Still there are many studies showing that it was impossible for the facilitated individual to pass on information unknown to the facilitator. Quite often messages were produced that did not refer to the question but only to the knowledge of the facilitator. These are facts one cannot deny and has to deal with. This should not, however, lead to the precocious conclusion that the method be abandoned.
Researchers who studied this method intensively have been searching for factors that may be responsable for these results. They looked at variables such as the influence of familiarity with the situation and between facilitator and client, considering these factors from the perspective of the facilitator as well as the facilitated person. They also considered the level of the question in relation to the capabilities of the subject. Further they took into account the difference between a question in a relevant communicative context as opposed to an isolated, socially irrelevant
question. The researchers also studied the influence of a consciously misleading piece of information provided by the facilitator, the impact of the level of experience of the facilitator, and other factors.
Taking these and other factors into account, different studies have been conducted and shown that the facilitated persons were able to confer information to the facilitator that he had not previously known.
It would be wrong, though, to conclude from these findings that all messages produced via FC are authentic. On the other hand, it invalidates the complete rejection of the method.
FC users are well aware that influence through the facilitator happens. This is the case, for exarnple, when one thinks a message is complete and reacts to it although it was not yet finished. Corrective reactions from the facilitator can also change the statement of the facilitated person. It is also important to remember that the facilitated person depends on the facilitator and that statements are made according to the state of their relationship. These and other ways of influencing do happen; however, they also happen in normal everyday communication. Mutual influence is inherent to human communication. It is in the interest of both parties involved in FC to get to know as much as possible about such phenomena and to limit them as much as possible. However, it would be unfair and beyond reality to denounce these influences as conscious manipulations of the movements carried out by the autistic individual.
It is still an important experience
for me, that after all those hours of facilitating I still cannot
always be certain. Maybe, though, such irrefutable certainty
would bear the danger and not the unanswered question.
4. The Place of FC
within the whole Therapeutic Concept
Each institution, each therapist, each country favors one or the other therapeutic concept or approach towards autism. This will enrich our common knowledge, provided that there is an exchange of experience. An all encompassing therapy is a futile attempt and it would be an arrogant claim to offer such.
However, therapy with people with autistic symptoms is definitively much more than enhancing the communication. And enhancing communication encompasses much more than using FC.
Still, FC is a very important means of communication because it opens up new possibilities within this core symptom area. We are faced with chances that have never before existed for these people.
Because we can now communicate about contents of therapy, this method allows us to a so far unknown extent to obtain feedback about other aspects of the therapy. It also gives us the chance to include the clients' wishes regarding things to be done in therapy. Thus the interaction between client and therapist has gained a new quality.
The contents and intellectual niveau of the messages often lead us to a new understanding of the persons we work with. They reveal a personality that has been hidden from us despite careful observation. Thus the utterances of autistic FC-users ought to influence our whole therapeutic concept, even with regard to those who have not yet been able to use this form of communication. Therefore the attempt to communicate by this method should always be a comerstone of the therapeutic work.
In any case, the question
of using FC is not only limited to some individual case. Experience
tells us that such a limitation would lead to assigning FC the
wrong place within the whole therapeutic concept.
5. How does FC Add to
the Understanding of Autism?
Useful therapy needs an understanding of the underlying problems. Therefore research has been done with great intensity to determine causes of autism, develop new approaches, and determine the impact of various therapies. Until now we have not had the chance to explore and understand the problems to the extent that is now made possible through the clear and insightful messages of autistic people. Similar statements have a much greater impact if they are made on a broad basis. A thousand pieces make a puzzle no less complicated, but they enable us to produce a more detailed picture.
The recognition that many autistic people have such mental abilities -- and rather as the rule than as an exception are able to at least mentally make use of them-- should coin the picture of them as a group. It should also change the society's attitude towards autistic individuals for the better.
Even if this process takes
time, it will help the individual person with autistic problems
incredibly if he can correct the picture we have painted of him
through FC. It would be especially positive if this person was
granted the chance to correct our views before we have misjudged
him for half of his life.
Some messages, produced with
the help of the FC method, may be in order to give you an
impression of the difference FC can make:
COULD I PLEASE FOR A REALLY LONG TIME TRAIN MY RIGHT HAND IN OTHER SKILLS AND THEN TRY AGAIN WRITING...
WHAT WERE YOU THINKING ABOUT?
YOU TRY TO MAKE THE RIGHT
WORK DEPENDENT ON MANY DIFFERENT FACTORS AND THEEREBY YOU LOOSE
THE RIGHT OWN GOALS OUT OF SIGHT...
FIRST, I'M MUCH MORE INTERESTED IN REACTIONS THAN -- LIKE TODAY --
JUST TRAINING OF THE TECHNIQUE.
SECOND, I HAVEN'T BEEN ASKED ABOUT REAL INTERESTING TOPICS
THIRD, DISCUSSIONS ABOUT THE
ZIVI DON'T HELP ME.
ONLY WHEN I AM IN CLASS I
GET ENOUGH INFORMATION, HAVE WHAT I'VE LEARNED BEFORE LEARNED
WITHOUT THE ZIVI.
SEEING AND FEELING I'M SUPERIOR TO CHILDREN OF MY AGE. THUS THE AVERAGE SITUATION I EXPERIENCE IS DEPRESSING. NEVERTHELESS I LIKE THE CLASS OF MRS. K. A LOT.
PLEASE TRY TO MOTIVATE HER
MORE.
I THINK IT IS URGENTLY NECESSARY TO CHANGE THE DRAMATIC
SITUATION OF MEASURES TO PROMOTE LANGUAGE-DEVELOPMENT SO THAT WE CAN NOT ONLY WRITE BUT ALSO TALK. THERE IS SOME SORT OF DEPENDENCY IN WRITING THAT KEEPS US FROM BEEING INDEPENDENT.
Felix 11 years.
I LIKED IT THAT - YOU HAD PATIENCE - STARTED - YOU PRAISED ME - YOU DID NOT ALWAYS MAKE ME EXERCISE THE SAME SENTENCE
I DID NOT LIKE YOUR MOVEMENTS
WITH THE HANDS - LAUGH WHEN SOMETHING GOES FAST -
I WOULD PREFER TO TALK TO
YOU DIRECTLY, BUT IT DOES NOT WORK OUT YET. I KEEP TRYING BUT
TO TALK FREELY IS STILL AN IMPORTANT GOAL. IT DOES NOT NEED TO
BE AS INDEPENDENT AS CHILDREN MY AGE DO, BUT IT SHOULD WORK OUT
THAT I CAN ANSWER WHEN I GET ASKED.
THIS WAY I BELIEVE THAT I HAVE A REAL CHANCE SOMETIMES TO GET BACK TO AN ORDINARY SCHOOL
jeanine 11 years
AIR OUT THE ROOM, IT SMELLS LIKE PETROL.
I'VE ALWAYS HAD A KEEN NOSE. TODAY IT IS ALMOST UI\TBEARABLE AND STILL I CAN BEAR IT.
SOME TIME AGO I WOULD HAVE BEEN RUNNING OUT OF THE ROOM AND NOBODY WOULD HAVE UNDERSTOOD ME.
Martin 14 years
PETER, HOW CAN I HELP YOU BEST TO KEEP IT GOING ...
WITH AN ADULT VOICE AND WITHOUT
STUPID QUESTIONS THAT SHOW THAT YOU DON'T CARE MUCH ABOUT ONE...
I WOULD LIKE TO KNOW WHAT YOU CAN DO AGAINST MY STUPID BEHAVIOR.
WHAT STUPID BEHAVIOR DO YOU MEAN?
THE CONTINUOUS WRIGGLING.
THE PROBLEM IST NOT THAT I DON'T WANT BUT THAT I WANT TOO MUCH AND THUS GET VERY EXCITED. WITH THAT I DON'T GET ONE STEP FURTHER, BECAUSE THEN I SIMPLY BLOCK. NOBODY KNOWS WHAT INHUMAN SITUATION IT IS TO WANT SOMETHING AS MUCH AS I WANT TO COME HERE AND NOT BE ABLE TO DO IT IN A SITUATION AND THEN HEAR THAT IT'S YOUR FAULT IF YOU DON'T WANT. PLEASE STOP ACCUSATIONS. ACCUSATIONS DON'T HELP ME BUT QUIET WORDS, LITTLE IMPULSES AND POSITIVE CONVICTIONS. WITHOUT THIS LOVING ATTITUDE I'M HELPLESS AND LOST.
Peter, 22 years