Facilitated Communication Training _ Chapter 12 - Case studies

Facilitated Communication Training, by Rosemary Crossley

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12.  CASE   STUDIES

Case Study 1 - Ian

Ian  was almost 12 when his mother brought him to DEAL.  He wore a number of labels.  He had been assessed as having cerebral palsy, and attended the cerebral palsy clinic at the Children’s Hospital, but had been rejected as a student by the cerebral palsy school on the grounds that he didn’t have it.  Whether or not he had cerebral palsy, it was obvious that he had significant neuromotor impairments — he had difficulty walking, and an unusual gait.  He had also been assessed as severely intellectually impaired, and  was attending a sspecial chool for children with IQs under 50.  He had not been formally diagnosed as autistic, but he had a number of autistic traits — he was obsessed by electric lights, gazing at them and making stereotypic movements with his fingers, he rocked back and forth, and his attempts at speech were unclear but very repetitive.  Ian’s noises and rocking were certainly not the behaviour of a typical eleven-year-old and contributed to an impression of retardation, but these behaviours were offset by his sense of humour and his response to social situations. He was often the first person in the room to laugh at a joke.  

Ian had very little functional speech. Very occasionally he was able to get out a clear sentence, but most of the time his speech was quite unintelligible, only the odd phrase or single word coming through. He had been involved in a manual signing program and could recognize 50 or more signs, but he did not produce anything like this many himself. He had been  working with a speech therapist on word recognition, and over the years his mother had done a lot of work with flash cards.  

My notes from his first session in May, 1986, read
Ian is very distractable.  He was fascinated by the lightshade, which was the same as one he had at home, and in consequence we worked most of the time with the light off.  Once having made eye contact, my eyes  and face engrossed and amused him and it was often necessary for me to avert my eyes to get him back on task.  Unless major efforts are made to get and keep Ian on task he will point randomly without looking, leading to a high error rate.  If Ian is prevented from pointing until he is on task, his error rate drops markedly.

Ian had a habit of forcing eye contact — he would make a noise, you’d look, he’d push his face up to yours and almost grab your eyes with his.  It was a mistake, I found, to turn to him when he vocalized, and deliberate eye avoidance until he was back on task worked much better.  Ian used this strategy very effectively to avoid tasks and to get attention. His concentration was also interrupted by his frequent attempts to speak, which generally consisted of the same phrases — “I will...”  or  “I would like...”  tapering off into incomprehensibility.

Ian demonstrated the use of his wordbook with his speech therapist without much enthusiasm.  The wordbook had five words to a page, and if Ian was asked to point to a named word he did so correctly 50% of the time.  I put some word cards out in pairs.  When I held Ian’s left wrist to keep him on task and to prevent his stereotypic hand movements he pointed with 100% success to the nominated word from each pair with his right hand.  

Ian’s performance on word recognition was pleasing — for a person assessed as having severe mental retardation, he was doing very well — but it did not lea me to question his diagnosis.  Up to this time DEAL had been working largely with people with severe physical impairments, and Ian was one of the first children we had seen who was able to walk.  His physical skills seemed relatively well developed — well developed, at least, for a child who had been diagnosed as having cerebral palsy — and if he was intellectually able to do something, such as recognise signs, then there appeared to be no physical reason why he could not make use of that knowledge.  We had not yet appreciated the significant effect motor planning problems could have on the performance of people with developmental disabilities.  My comments at the end of his first session were
Ian’s present communication program seems most appropriate ... In addition to direct communication benefits it may provide motivation for Ian to come to grips with some of his unproductive behaviour and show more of his abilities, which may be greater than those he is using currently.

Ian did not come back to DEAL for 6 months.  During that time, we had seen many more people like him — people with little or no functional speech who had been diagnosed as having significant intellectual impairments, who could walk, but who nonetheless had hand function impairments that were preventing them demonstrating all the skills they had.  We were thinking about apraxia, and we were learning not to restrict the options offered to individuals because of the labels they wore.  As a result, we had developed a different and more open-ended assessment strategy.  It was based around a children’s toy, a talking computer.  The therapist presented a series of questions, spoken by the machine, which the student could answer by pressing the correct item on the display.  On this session I supported Ian’s right wrist.  His index-finger pointing was fine, and in fact once his wrist was supported he had excellent hand and finger movement.  You could hold him in one position and if the area to be covered was small he would swing his whole hand or finger to the key or item that he wanted.  He completed the colour sheet on the Talking Computer, where the machine asked him “Show me the word blue.” or   “Show me brown.”, and the picture sheet, where it asked “Show me the car.” or “Show me the word house”.  On the sheet that had letters of the alphabet he was able to point correctly to the letters that I named.  I asked him if he had anything he wanted to try and spell.  He spelled I CANT FINCD LETTERS — which wasn’t really true, although he had had to peer down and hunt around a bit to find them.  He then spelled IL WRITE and IM IDIOTICK.  

I then brought over a Canon Communicator, a mini-typewriter, which had a plastic guard over the letters that made it impossible to hit two letters at once, helping Ian to be both more accurate and more independent.  I asked Ian about the way he kept saying “I will...”  or  “I would like...” and asked him to type what he wanted.  He didn’t, and the repeated phrases did not appear to indicate an actual need.  I asked him why he was saying this if he didn’t in fact want anything, and he typed I SPEEK SO YOU DON’T.

On his next visit Ian spelled with a volunteer holding his wrist, and on the visit after that, a speech therapist. Some of his spelling was phonetic, particularly of unusual words he may not have seen written down — rhinoceros, for example, was RINCEROS, which was a good attempt.  His mother asked him to tell the therapist the name of a friend’s dog, which was a check both on his memory and his ability to get out something that the therapist didn’t know. Ian spelled BO: the dog’s name was Beau.  Shortly afterwards Ian started spelling to his mother, communicating with her as fluently as he did with any of the DEAL staff.  

Ian’s mother was frustrated with Ian’s situation at the special school, where the staff appeared unwilling to undertake any communication programs, and had applied for him to attend a regular primary school for a couple of half-days a week in 1987.  If he went to a regular school not only would he have the other children to model his language on but while he was there he would have a one-on-one integration aid to work on his signing and his communication.  This had all been set up before there was any thought of Ian communicating by spelling, and he spelled his first words just before he was due to start at his new school.  At the beginning Ian was very noisy in the classroom, it was difficult to get him to do things, people really didn’t know what level to address him at, and he was initially perceived very negatively.  In particular, Ian had a problem with bursts of laughter.  They were quite disruptive at DEAL, and must have been very disruptive in the classroom.  I was never sure if they were involuntary or whether they were intentionally attention-seeking or disruptive.  

Ian had been placed in fifth grade, and so was about 2 years older than the other children, but because of his relatively slight build didn’t stand out as significantly different.  His classroom behaviour was a major problem and at first led to his being given very simple activities which were well below the level of the activities being done by the other children and well below his own ability level.  He badly needed to communicate.
Six weeks after he’d started at primary school his teacher and his integration aide came to DEAL and we arranged to teach the aide Ian’s communication strategies. In a few weeks Ian had achieved fluency in spelling with his aide providing wrist support. It was soon possible to start fading support ,and shortly he was able to spell with his facilitator’s hand under his elbow.  A speech therapist asked Ian what should be done about the noisy laughing.  He spelled IF I KEEP LAUGHING TELL ME ‘KEEP QUIET’ — VERY POLITELY.  Laughter continued to be an issue for a while yet, and a month or so later Ian spelled out I AM A FOOL SO I DONT HAVE TO DO ANY WORK.  As Ian started demonstrating his real ability level his behaviour in the classroom began to improve, and the amount of time that he was attending regular school was increased.  

Many of DEAL’s clients had neuromotor problems that were not necessarily apparent to the untrained eye, but in Ian’s case his difficulties in walking had at least alerted everyone to the fact that he did have a genuine neuromotor problem and there was acceptance of the fact that he would need continuing physical and occupational therapy help.  In June the school physiotherapist came and compared notes with our physiotherapist.  Our physiotherapist hypothesized that some of Ian’s rocking or stereotyped behaviours might be an attempt to achieve more proprioceptive feedback, and she tried standing behind Ian and pressing down firmly with her hands on his shoulders while he was typing.  While he didn’t like it, he spelled more fluently and quickly when given this strong proprioceptive input.  The physiotherapist also commented on his poor eye fixation and tracking, his undeveloped hand function, and his general apraxia.  It was decided to incorporate coactive bilateral or unilateral hand function tasks and more proprioceptive stimulus into his ongoing physiotherapy program, which would have been fine if Ian had been co-operative, which most of the time he wasn’t.

By this time Ian was attending the primary school for five mornings and one afternoon a week.  He was doing regular classroom work, and had reached this standard in ten weeks.  He did have catch-up lessons in maths twice a week, but obviously it wasn’t a matter of him learning everything as he went; what was happening was that Ian’s new ability to use a keyboard was allowing him to demonstrate language and reading skills that he already had. 

While other DEAL staff continued to work with Ian I didn’t see him again until September 1987, when I was brought in to read him the riot act because he wasn’t doing much work at school.  He was quite sensible throughout the session — no giggling or laughing, and only a couple of attempts at irrelevant speech.  His eye contact was normal.  Increasing Ian's independence was a priority; I found that Ian was able to do some spelling on the communicator without arm support but with firm pressure from my hands on his shoulders to provide proprioceptive input.  This was successful for a short time, but three problems were obvious.  Firstly, he had difficulties lifting his arm against gravity and maintaining it in position against gravity, as he needed to do if he was to access the keyboard with one finger.  Secondly, his forearm tended to roll outward leading to his thumb and index finger swinging up and away from the keyboard, so he might be pointing at a key but not be able to apply any pressure to it.  This external rotation had been corrected by Ian’s facilitators without the facilitators even realizing that they were doing this.  Thirdly, his wrist tended to bend, resulting in his hand dropping and his forefinger bending and, again, a difficulty in applying pressure, so that he might be hitting the right keys but not hard enough and his typing would come out with every second letter missing.  When Ian’s arm was supported, either at the elbow or by holding on to his sleeve, his forearm and wrist position normalized.  This gave him stronger and easier finger movement.  I tried sitting next to Ian and raising my knee so he could rest his arm across my knee as he was typing.  That was quite effective, but there were going to be obvious difficulties using this method in the classroom.  There didn’t seem to be an immediate simple answer.  We suggested various activities, such as poking holes in lumps of clay, that Ian could do to improve muscle tone in his finger, and others, such as lifting weights, that he could do to improve his overall arm and shoulder strength.  These, and continued typing practice, produced some improvement.

By the end of his first year of spelling and typing Ian could type with just the touch of the facilitator’s finger on his shoulder (and it wasn’t clear why he even needed that) providing his communication aid was on a table that was lower than his armrest so he didn’t have to lift his arm against gravity.  When he had this little support, however, he was slower, and he couldn’t sustain the effort for very long.  Furthermore, independence reduced the accuracy of his pointing, and that meant he had to use larger squares for the letters.  The only portable aid we had with letters this size was an early speech synthesizer, the Vocaid, which had letters about 2 cm square but had no written output and so while perfectly adequate for social conversations was useless for producing schoolwork.  Ian himself said that he preferred being held — LESS ARM SUPPORT IS HARD    WITH ARM SUPPORT I FEEL BETTER
In 1988 Ian was a full-time student in Grade 6 in a regular primary school.  DEAL continued to work with him and to provide information and training to his teachers and aides.  He was seen by our occupational therapist to assess his hand function and to advise him on the best keyboard for him to use.  She commented on the difficulty that Ian had with praxis — with getting the correct movement to happen.  The attempt was clearly there, but the execution was flawed.  Ian scored 37/75 on the Upper Extremity Function Test with his right hand (his dominant hand ).  Our technician started to design a chair especially for him with an adjustable armrest for arm support and a stand for the communication aid.

By this time there was disquiet among some professionals in Victoria at the results that were being achieved by Ian and other people with similar diagnoses who were attending DEAL. As a result a government agency, the Intellectual Disability Review Panel (IDRP), was asked to conduct an official inquiry into what they called ‘assisted communication’.   Ian was concerned that DEAL was under threat, and in August he typed a message for the DEAL Annual General Meeting.

A chance to communicate is ever so important.  You should never deny someone the opportunity to talk.  I think that my life is just starting to come together now.  I hate having people doubt that I can understand, but it is so hard not to behave as if I was stupid.  

The Panel tested 6 DEAL clients in the latter part of 1988.  Ian was one of them.  By this stage Ian had been facilitated by numerous staff, aides, and family members, and he typed successfully with one of the investigators facilitating him.  The test he was given to confirm that he rather than his facilitator originated the typing was simple, quick and straightforward.   The investigators gave Ian a present while his regular facilitator was absent — a book called ‘The Man From Snowy River’ containing a well known 19th-century Australian poem about a stockman rounding up wild horses.  When she was called back into the room he had to tell her what he had been given. Ian typed ‘BOOK’ He was asked what the book was about, and typed ‘EARLY DAYS.’ The investigators’ conclusion was that
It is clear from the above message passing exercise that this client's communication whilst using assisted communication has been confirmed.

Overall, four of the six DEAL clients tested by the IDRP validated their communication using facilitation.  
With increased typing fluency Ian’s sense of humour started showing itself in creative writing.  Near the end of 1988 he entered a competition conducted by Telecom, the Australian Government telephone company, for a piece of writing about telephones.  The competition was open to anyone, adult or child, and Ian won a prize with a quirky poem which met Telecom’s needs perfectly.

I’m in the bath midst clouds of steam
enveloped in a rosy dream.
Ring! Ring! O dreaded sound I hear
And dripping wet, a towel I wear.
“Do you know the price of gold?”
Wrong number! Now the water’s cold.

The irony was that because of Ian’s speech impairments he himself had never been able to use a telephone.  

In 1989 our technician completed Ian’s specially adapted chair. It certainly worked in one way — using it Ian was able to type more independently, needing only his facilitator’s hand on his shoulder — but in that year Ian started secondary school, and instead of being in the same classroom all day he had to move between classrooms.  Ian’s weak shoulders and poor balance precluded him from carrying anything substantial, his aide already had to carry a bag of books and a typewriter between classes, and carrying a  chair as well was obviously impractical.  We tried a detachable armrest, but even that was too much.  In any case, secondary school demanded such quantities of written work that to some extent independence had to be sacrificed to speed.  Provided the keyboard was low enough Ian could by this stage type with just a facilitator’s touch on his head; indeed, he could type briefly with no contact at all.  However, this was very slow.  If he had support at the elbow his output was much much faster. Ian not only had to do the same amount of homework as the other children, only more slowly, but also had to catch up after school on any work he hadn’t completed in the classroom. Greater independence with less speed could mean he would have four hours work every evening, and he was only in seventh grade.  

When Ian first started at secondary school all the students were asked to draw pictures of themselves.  Because Ian didn’t have the hand skills to draw a picture, he wrote it.
ME
This is a portrait of strange me.
I cannot draw, so you can see
I'll have to paint it all in words.
My eyes are blue, my hair is fair,
My type of speaking is quite rare,
A skinny weed I seem to be.
Inside I am a man of dreams -
Of fearless deeds and cunning schemes,
A handsome superman
In fact, when in a pensive mood,
I'm better far than Robin Hood
Or even Sherlock Holmes.
I'm Liberace on the keys
And white Shark Norman on the tees,
Jack Brabham in the car.
So when you meet me at the school
I may be Armstrong in the pool -
So look out for the                                SPLASH!
(Norman, Brabham and Armstrong are Australian sporting heroes.)

By this stage DEAL’s involvement with Ian was limited to training his new integration teacher and integration aides and occasional troubleshooting.  Ian had gradually become quieter in the primary school classroom, but his noises and inappropriate laughter reappeared when he started secondary school.  While he was able to type quite fluently to his new aides, Ian was not doing much work in the classroom, and one of our speech therapists went down to his school to observe him.  She felt that one of the reasons for his lack of co-operation was that in fact he couldn’t do some of the work, and she instituted detailed language testing.  It appeared that Ian had some difficulty with reading, in part relating to visual coordination problems and in part to visual acuity.   Ian got glasses shortly afterwards and his problems improved significantly.  He also showed some minor difficulties with short-term memory and word retrieval, and some difficulties with decoding some complex language structures.  Put together, these problems had affected Ian’s ability to perform in the classroom.  The speech therapist asked Ian about it.  He said Yes, there had been a problem, he hadn’t told anyone about it because he felt he would be excluded from the school, and he didn’t want her telling anyone either. There was in fact no risk of exclusion and Ian was doing well with the work that he did do.  DEAL recommended some changes in the way work was presented to Ian — that printed material be enlarged on the photocopier, that distracting peripheral material be removed, that he be given help in following along the line when reading either by having other lines screened or by having a ruler below the line he was looking at.  The problems gradually resolved, or perhaps more accurately accommodations were found.  

In 1990 Ian won a certificate of distinction in a schools science competition competed for by 8th grade students all over Australia.  His academic work was perfectly satisfactory, but other problems were pushing themselves to the fore.  Ian was older than the other students in the class, because he’d started at regular school much later. His classmates were 13 going on 14, hitting puberty and becoming very conscious of Ian’s differences, and Ian, now 16, was also increasingly aware of the things that the other students were doing and he was missing out on.  At the end of the year Ian wrote a follow-up to his earlier self-portrait.

Daydreaming
Sixteen years of super dreams
Have faded to reality -
No longer images of fame
Drift through my personality.
Once I loved to sit alone,
Dreaming I was flying high
Taking capsules to the moon,
Fighting Rambo!  Now I sigh.
Each day I was like a super scout,
Making world a better place,
Playing tennis just like Cash
In every game I held the ace.
Cached in my mind, a mighty fund
Of stories with myself as hero -
Now at last the sad truth dawns;
Down my hopes have gone to zero.
Here I am, a weakling lad.
What replaces all my dreams?
Earthbound, speechless, without friends,
A teenage misfit in blue jeans.

At around this time his diagnoses were reviewed.  His pediatrician finally diagnosed him as autistic, and the label of intellectual impairment was removed. People with autism are sometimes said to be unable to understand human relationships, but Ian seems to have a grasp of them at about the level of his peers.  In 1992 he wrote about his very nice sister...
My sister broke up with her boyfriend last week and she is a real pain since then.  I like Tommy living with us, sometimes he would play ball with me and I sit and watch him do his drawings.  My sister is a fool and lazy, all she cares about is herself and her ugly dogs.  I wish she would like me better, she hates me I think.  I wish she would take me out for a drive sometimes in her nice car and meet her friends.

My Sister
My sister is a fool. Just as silly as her dogs. Poor old Tommy got thrown out the other day to his dismay. I miss him terribly.  At least he was sane. As for the dogs they could have gone too.  Oh listen to Lisa weep. But why?  She threw him out. Oh God I wish she’d get married and move away. That’s my sister.  Crazy — Doesn’t even know when she had it good.

The Victorian Certificate of Education, the final assessment for secondary school students, extends over 2 years, and Ian is about to conclude his first year (1993).  Because of the quantity of work involved, he is able to do only a small number of subjects, but his results to date are quite satisfactory, despite some difficulty in getting up to speed with a new aide.  

As speed is of paramount importance at this level, independent typing is again taking a back seat.  Despite having a lot of occupational therapy input over the past few years, Ian is still very significantly slower if he types alone or with less than elbow support.  Perhaps if he had started working on typing and arm and hand function much younger, he would now be able to type independently at a reasonable speed.  

Subjectively there appears to have been an increase in the number of appropriate spoken responses Ian makes.  Certainly there has been a significant diminution of inappropriate speech, noises and giggling, though all can still recur, along with his stereotyped hand flapping, if Ian is excited or tense.  Ian’s eye contact is good, and he uses non-speech gestures such as shaking hands or giving five appropriately.

Ian’s story illustrates the value of a multi-disciplinary approach to non-speech communication.  He required input from almost every team member and from every discipline.  His development parallels the development of facilitated communication training at DEAL, in that Ian was one of the clients we learnt from and practised on.  The challenges for the future are  for Ian to find a satisfying role after he finishes school, and for us to find a way for him to access an appropriate communication aid quickly and independently.  A small laptop with word completion and prediction strategies and voice output may offer him most in terms of empowerment.

 

Paul

Paul was 12 years old and in sixth grade at his neighbourhood school when he was brought to the communication centre by his parents in September 1989.  His parents were in their forties and had professional qualifications.  Paul was the second of their three children.  He has Down syndrome. 

Paul's motor development was only mildly delayed and he walked alone at 18 months.  He said his first word at 18 months and his first two and three word utterances at 24 months.  As a toddler, Paul's speech varied from day to day, and this pattern continued through his primary school years.  Sometimes he spoke in sentences and initiated conversations.  On other occasions he seemed to have difficulty giving one word answers to questions.  Paul had speech/language therapy for an hour a week for 2 years between the ages of 6 and 8, when all therapy was discontinued because of lack of progress.  At age 12 years, Paul would occasionally utter a complex sentence; more commonly he would use two or three word utterances, and sometimes he wouldn't even manage that, responding to questions not at all or with gestures.  While Paul had some articulation problems his speech was generally intelligible.  To some extent his speech appeared to reflect his muscle tone, which was variable.  On days when Paul's body almost seemed too heavy for him to move, his speech was more limited and less clear, and he didn't initiate conversation or movement.  On days when he was full of energy, his muscle tone was higher and he spoke far more.  While his oral language still wasn't normal, and he still couldn't say everything he wanted to say, which frustrated him, he could speak when he was spoken to and he would spontaneously ask questions and make comments, displaying a wicked sense of humour.  However, even when he was at his most vocal, his responses to complex instructions and to jokes on subjects such as politics indicated that his comprehension was well in advance of his speech production.

One extra problem plagued Paul and his family.  He would perseverate and say the same word again and again.  'Banana' had been the first word he'd said at kindergarten, and had been much praised   Encouraged, he said it so often that it became automatic and came out at all kinds of inappropriate moments.  Paul was not beyond using "banana"deliberately to stir his parents; unfortunately, every time he did so made it more likely that it would come out when not wanted. 

Paul had done a modified school curriculum at the local primary school.  He sat in with the class, but he wasn't expected to do everything they did.  At age 12 he had writing skills at about a six or seven year old level.  His writing showed motor planning and perseveration problems.  He could not read aloud but he spent a lot of time turning the pages of books that were age-appropriate.  His family watched him with amusement and thought that he was imitating his sisters.  His mother said that he could play the piano a little as a result of long-term teaching, but had difficulty tying his shoelaces.  He was independent and walked to and from school by himself. 

Paul was due to start at secondary school in February, 1990.  His parents and teachers were concerned as to how he would cope both socially and academically in his new school and were seeking help with his communication.  At this stage, his parents were looking for augmentative strategies that could help Paul make himself understood.  It had been suggested that Paul use Australasian Deaf sign.  (In Victoria the Makaton sign vocabulary [Grove & Walker,1990] is probably the augmentative strategy most commonly used with people with Down Syndrome [Iacono & Parsons,1986]).  However, several important considerations had been overlooked. Communication partners fluent in sign were not available in a regular secondary school.  While it is possible in a primary school to teach sign to the signing student's class and teacher this is more difficult at secondary level, where the student moves from class to class.  As well, it was difficult to answer schoolwork-related questions in a restricted sign vocabulary, and the signing required certain motor skills (Klein,1982).  When asked to imitate a simple hand posture, holding up both hands with the index fingers extended and the other fingers flexed, Paul was unable to do so and had to use his left hand to hold down the fingers of his right hand to achieve index finger isolation.  This did not mean sign acquisition would be impossible, but it did raise significant questions about the ease with which Paul would be able to learn sign shapes. 

 Like most older children and adults I have seen with severe communication impairments associated with a diagnosis of intellectual impairment, Paul suffered from lack of self-confidence.  When spoken to, he hung his head and "went blank" or feigned deafness.  Initially he made no apparent effort to do anything I asked.  He was sullen and unco-operative until offered a toy, "My Talking Computer", which had a voice.  My initial assessment was based around this toy, which can be used to ask questions that explore the student's knowledge of concepts from picture recognition to composing sentences by selecting written words.  After successfully completing all the assigned tasks Paul typed his name, and typed "I CAN READ   I GET SILLY    I CANT STOP SOMETIMES    SCHOOL THINK I'M STUPID" on a Communicator.  He had considerable difficulty isolating an index finger to hit the letters.  This was remedied by having him hold a rod in his palm with his other fingers.  Paul's communication partner held the other end of the rod to compensate for his low muscle tone and endurance (and to stop him from fooling around).  Testing showed reading comprehension appropriate for his age.  This is not exceptional; Buckley (1985) cites a number of examples of young children with Down syndrome who had reading comprehension skills equal to or in advance of their age peers.  Paul's spelling was poor for his age but his vocabulary appeared to be above average and he used standard syntax.

Paul had a bad habit of regressing to immature behaviour whenever he felt anxious.  Whether he felt anxious because he was in a new situation or because people were in fact babying him, the behaviour was unproductive.  Towards the end of 1989 Paul paid a number of visits to his future secondary school.  His behaviour was inappropriate.  When asked to do things he laid down on the floor and refused to budge, he said"banana" a lot, and he demonstrated few skills. 

Over the six weeks of the Christmas holidays Paul communicated fluently with all of his immediate family by typing on a Communicator.  In that time he used the Communicator everywhere he went, with his extended family, with neighbours, and with friends.  He was reported as walking taller, looking people in the face and responding, orally or on the Communicator, when spoken to.  Paul attributed the change to his new means of communication.  His family reported that they started to interact with him differently as he showed them unexpected capabilities and understanding through his typing.

By July, 1990 Paul's new teacher, who had been dreading his arrival, was able to say, "Now he's just another kid."  His contact with the communication centre was limited to monthly communication groups in which he had no hesitation in expressing his opinion "i insist on academic [work] on the next session being held here am i damn well going to get it".  He no longer had a modified syllabus.  In December 1990 his best examination result was 90% in German, which was a new subject for all the students.  He could type short answers without any facilitation, but he tired quickly.  In some classes he was accompanied by an integration aide.  If she was not there and he needed someone to hold the end of the rod when he was typing longer answers, he just asked one of the other students to help.  In 1991 his mother and teacher reported that Paul was speaking more and that his spoken vocabulary had increased.  Clunies-Ross (1990) found that the reading skills of young children with Down Syndrome could be used to improve their understanding and use of spoken language.  Paul generally introduced new words into his oral system after he had typed them, though he certainly has not said every word he has typed, and he still has problems reading aloud.  A speech/language pathologist has recently suggested that he has significant oral dyspraxia.

By 1991 Paul no longer had problems with index finger isolation and his tendency to perseverate on selections had abated.  Consequently it was possible to administer a Peabody Picture Vocabulary Test - Form M (Dunn and Dunn,1981) with no facilitation.  To ensure scanning each of the four plates was indicated by the examiner before the question was asked, and Paul was encouraged to pause before responding.  His score was above the 99th percentile, confirming the initial impression that Paul had an above-average vocabulary.

Paul's communication training continues in 1992.  He needs to become fully independent in typing, to augment both his speech and his handwriting.  As well, he needs quick ways of getting across routine messages such as lunch orders on days when his speech lets him down..  Communication wallets containing words and phrases specific to different situations need to be developed.  Paul also has to learn to select the appropriate communication strategy for each situation, out of speech, gesture, communication wallet and typing.  The need to select the appropriate mode became obvious when Paul, in mid-adolescence, started swearing at his aides on the Communicator.  As the evidence was incontrovertible, he was frequently suspended from school.  If he had sworn in speech, he might have got away with it.

 

The Challenge

Ian  and Paul are two individuals with severe communication impairments who had been judged to be respectively mildly and moderately intellectually impaired.  Training in non-speech communication has enabled each of them to challenge the labels they had been given.  Each had different hand function impairments which affected his or her ability to use augmentative communication, and each used facilitation to circumvent these impairments.  For communication training to be successful it was as necessary to examine and treat hand function as it was to assess speech/language.  Their experiences suggest that individuals who have both severely impaired oral language and impaired hand function are especially vulnerable to mis-assessment of their intellectual functioning.

The achievements of Paul and other students with Down syndrome who have been given alternatives to speech and writing add to the considerable body of literature drawing attention to 'unexpected' achievements by individuals with Down syndrome.(Clunies-Ross,1986).  To date, it has been assumed that, while there may have been an overall underestimation of the potential of individuals with Down syndrome, only a small group of 'higher functioning' individuals have normal, or borderline, intelligence.  This small group may consist of those individuals who have unimpaired, or less severely affected, speech and fine motor skills, thus enabling them to attack standardised tests more successfully.  This could parallel the earlier experience of another diagnostic group, individuals with cerebral palsy. 

Sixty years ago the received wisdom was that the severity of the physical impairment in cerebral palsy mirrored the severity of the intellectual impairment.  Now, with the advent of electronic communication and mobility aids, it has become clear that there is no necessary correlation between the severity of the physical impairment and intellectual status.  Many individuals with cerebral palsy without intelligible speech or functional hand skills have successfully completed tertiary courses.  Whether such academic achievements are possible for any individuals with Down syndrome cannot be known with certainty until the first group of students who have had their expressive impairments addressed from infancy has proceeded through the regular school system. 

Because Ian and Paul are ambulant,they needed easily portable communication aids that they could access with their hands.  Facilitated communication training has provided them with a means of communication while they develop the necessary accessing skills.  Other DEAL clients who initially required similar levels of facilitation are now typing independently, and this remains the goal for Ian and Paul.  Until they are totally independent their ability to communicate, and the influence exerted by their facilitators, may be questioned (IDRP,1989).

Johnson (1989) and Biklen and Schubert (1991) describe the use of similar facilitation techniques for similar reasons by children and adults assessed as intellectually impaired and/or autistic in Denmark and the United States.  The association of severe communication impairments with impairments of hand use which have gone undiagnosed and untreated does not appear restricted to Australia.  The incidence of treatable fine motor problems and speech/language impairments in older children and adults will presumably be less in localities where all pre-schoolers with development disabilities are given thorough neuro-motor screening and have access to remedial programs.  Even with the best of early intervention programs there will still be children with severe communication impairments requiring augmentative communication; however, concentration on the preliminary skills needed for manual signing and aid access, together with a positive attitude towards the potential of children with severe communication impairments, would significantly reduce the need for facilitated communication training.

The outcomes of individuals using facilitated communication suggest that further research is needed in many areas: the nature of the association between impairments of oral language and fine motor skills; the adequacy of the intellectual assessment of children with severe communication impairments; the incidence of remediable neuro-motor problems in individuals assessed as intellectually impaired, and the informal acquisition of literacy skills through environmental exposure.  Lastly, questions directly concerned with the facilitation process need investigation.

Ian and Paul had one thing in common.  Their lives were at stages where it was impossible to put their communication on hold while lengthy training programmes were implemented, even if the resources had been available to mount such programs (Beukelman,1991).  Haney (1988) proposes a 5-6 year time frame, starting from the initial augmentative communication intervention, for the achievement of communication competence, with aid use commencing in the third and fourth years.  Facilitated communication training is not an ideal solution to severe communication problems, but these individuals do not present ideal problems.  Despite its obvious limitations and disadvantages facilitated communication training did enable these individuals to achieve goals previously thought to be impossible.  It is a teaching strategy which should be considered for individuals with severe communication impairments whose hand skills limit their ability to use communication aids successfully.  As Anne Mc Donald said, "Unless someone makes a jump by going outside the handicapped person's previous stage of communication, there is no way the speechless person can do so.  Failure is no crime.  Failure to give someone the benefit of the doubt is."  (Crossley and Mc Donald, 1984, Pg 76)

 

References

Beukelman,D.R., (1991), Magic and cost of communication competence, Augmentative and Alternative Communication,1, 2-10

Biklen, D. and Schubert, A. (1991), New words: The communication of students with autism, Remedial and Special Education, 12(6), 47-57

Buckley, S. (1985) Attaining basic educational skills: reading, writing and number, in Lane,D. & Stratford, B. (Eds) Current Approaches to Down's Syndrome, (pp 315-343) London,England: Holt, Rinehart and Winston

Clunies-Ross, G. (1986) The development of children with Down's Syndrome: Lessons from the past and implications for the future, Australian Paediatric Journal, 22,167-169

Clunies-Ross, G.(1990) Intellectual disability - language and reading, in The Right  to Read - Publishing for People with Reading Disabilities, Canberra,Australia: National Library of Australia

Crossley, R. & McDonald,A. (1984) Annie's Coming Out.,New York,NY, Penguin-Viking

Dunn,L.& Dunn, L.(1981) Peabody Picture Vocabulary Test -Revised, Form M , Circle Pines,MN, American Guidance Services

Grove, N. & Walker, M.(1990) The Makaton Vocabulary; Using manual signs and graphic symbols to develop interpersonal communication, Augmentative and Alternative Communication, 1, 15-28

Haney,C., 1988, Communication device today, competency tomorrow: Are we being realistic in our expectations, Assistive Device News,2,5-6

Iacono,T.A., & Parsons,C.L.(1986) A survey on the use of sign programmes in Victorian facilities for the intellectually disabled, Australian Communication Quarterly, 2, 21-25

IDRP - Intellectual Disability Review Panel, (1989),Report to the Director General on the reliability and validity of assisted communication, Melbourne, Australia, Office of Intellectual Disability Services

Johnson,I., 1989,Hellish difficult to live in this world, Journal of Social Work Practice, 1, 13-29

Klein, M.D., 1982,Pre-Sign Language Motor Skills,Tucson,Arizona: Communication Skill Builders

La Pointe,J., 1984, Reading Comprehension Battery for Aphasia , Tizard OR, C.C.Publications

Victorian Symbol Standardization Committee (1983), COMPIC Computer Pictographs for Communication, Melbourne,Australia: Swinburne Institute of Technology

 

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