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Associated with Down Syndrome
A paper presented at the World Down Syndrome Congress 2000 in Sydney
DEAL Communication Centre enables people who have no functional speech to communicate in other ways. Since DEAL opened in 1986 hundreds of Victorians of all ages with a wide range of diagnoses, including cerebral palsy, autism, acquired brain damage and stroke, have sought DEAL's help.
One important group has been people with Down syndrome. All the individuals with Down syndrome seen at DEAL have been able to make substantial gains in communication once their speech and hand function impairments have been carefully assessed and appropriate therapy provided (Crossley, 1994, pp.124-7). Clients such as Michael Regos show what can be achieved and challenge the stereotype of Down syndrome.
Down syndrome is the name given to the cluster of physical and neurological impairments caused by certain chromosome abnormalities, most commonly an extra copy of the twenty-first. chromosome, Trisomy 21. Most people with Down syndrome have physical. and communication impairments. A 1990 study of children with Down syndrome found that 38% had heart problems, up to 77% had visual defects, and 62% had hearing loss (Turner et al, 1990). With an incidence of 1-2 per thousand, Down syndrome is described as "the largest. identified subdivision of· people diagnosed as having an intellectual disability" (Borthwick, 1994, p.59).
Views on the intellectual abilities of people with Down syndrome have changed significantly since the syndrome' was first delineated in 1866. A 1986 article said that
Up to the early 1900s people with Down syndrome were typically viewed as being profoundly mentally retarded. Surveys of children and adults during the first half of this century classified most people with Down syndrome in the severely mentally retarded category. Kinnan's (1974) review suggested that the majority of Down syndrome children fell in the moderately to severely retarded range, with 2-3% achieving at the mildly retarded level. In the 1960s there were reports of up to 10% of cases being educable or mildly retarded. By the mid-70s it was suggested that perhaps as many as 20-50% of older children and adults with Down syndrome were in the mild range, with a small number even achieving within the norma! range.
This revision is the equivalent of something approaching 40 IQ points in a 60- year period. Nonetheless. to date there has been an implicit assumption that, while there may have been an overall under-estimation of the potential of individuals with Down syndrome, only a relatively small group of 'higher functioning' individuals has the ability to handle the standard educational program. It may be that this small group consists of those individuals who have an extra chromosome but few other handicaps who have unimpaired, or at least less severely affected, speech and hand skills, and are thus able both to attack standardised tests more successfully and meet the work requirements of the regular classroom. Very little research has investigated the extent to which an individual's level of cognitive functioning can be masked by physical disability. As Borthwick (1996) wrote "There are no studies of the intelligence of people with Down syndrome that control for these factors ... "
Unsurprisingly, constructs such as mental age and IQ correlate positively with tests of physical and movement ability in people with Down syndrome - that is, those who do better on physical tasks are likely to score better on IQ tests (Henderson, Morris & Ray, 1981). Henderson et al. postulated that this correlation means people with Down syndrome '''of higher intelligence, may, therefore, be able to evolve strategies that minimize the effect of a physical disability ... ". An alternative explanation is that the people who do better on the tests have less severe physical disabilities to start with -- that motor impairment lowers scores on tests supposedly measuring only cognition.
The re-evaluation of the intelligence of people with Down syndrome may 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 and speech impairment in cerebral palsy mirrored an individual's intellectual endowments. 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.
Hand or head - upper limb function and expressive competence
Currently, however, the prevailing belief that Down syndrome inevitably entails significant intellectual impairment . still limits the achievements of individuals with Down syndrome. People with Down syndrome may not have access to interventions, even such basic items as spectacles, which would be provided as a matter of course to other people with similar functional impairments. People with Down syndrome who have severe speech impairments may not be referred for augmentative or alternative communication (AAC) on the ground that their speech is "good (or good enough) for someone with Down syndrome".
Adults with Down syndrome who are referred for AAC are likely to be offered only simple systems, on the presumption that they have cognitive limitations precluding the use of more complex strategies. In 1986, "the lack of appropriate low-level communication equipment" for a woman with Down syndrome prompted DEAL Communication Centre to ask a local firm to develop a small, simple speech synthesiser, containing eight utterances along the lines of "I'm hungry", which would be spoken when the user pressed the picture of a wanted item. While waiting for her device the client attended a literacy program and was communicating by typing on an alphabetic keyboard with a guard by the time the device went into production. During her schooldays she had been unsuccessful both with handwriting and unmodified typewriters. Ironically, if the eight utterance device had been available when she was first referred to DEAL, she may never have attended the literacy program. (Crossley, 1997, 166)
Additionally, any problems in using AAC experienced by those relatively fortunate individuals with Down syndrome who are referred for intervention are likely to be attributed to cognitive rather than motor limitations. In part this is because almost all children with Down syndrome walk and feed themselves before starting school so they are unlikely to have contact with physical or occupational therapists during their school years. Lacking detailed information about any neuro-motor problems affecting upper limb function, their teachers, psychologists and speech therapists may ascribe problems with handwriting, keyboarding and communication aid use to difficulties of understanding rather than difficulties of performance, and be both unaware of adaptations which could assist, and umnotivated to seek them out.
Specific hand function problems
The most common problems in hand use we have found in the people with Down syndrome attending DEAL are:
A fuller description of these can be found in Crossley, 1994.
These problems affect all hand skills, but impact especially on activities requiring sequences of fine, accurately co-ordinated movements, such as signing, hand writing and typing. It is important that the likelihood of such problems is recognised and communication and educational programmes adjusted accordingly.
Of 50 individuals with Down syndrome attending DEAL over a 5-year period only 2 (4%) were able to write a simple 3-word sentence without a model to copy from. None had a sign vocabulary of a hundred signs, and most had fewer than 20. Pointing and typing are far simpler tasks motorically than signing or writing. Nonetheless, most of the people with Down syndrome we saw had difficulty even with these tasks, due particularly to difficulties with index finger isolation and impulsivity. During intervention, 34 (68%) were able to type at least a 3-word sentence without a model, demonstrating that their communicative and educational potential was considerably greater than previously thought.
|DEAL has now seen over 2,000 clients with diagnoses that include
Autism/ASD, Cerebral Palsy, Down Syndrome, Intellectual Impairment, Learning Disability, Fragile X Syndrome, Rett Syndrome, Stroke/CVA,