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.

Background
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.  The physical effects of the chromosomal abnormality are variable — about 40% of babies with Trisomy 21 have heart defects, up to 60% have correctable visual impairments — and may include almost every part of the body.  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).

The prevailing belief that Down syndrome inevitably entails significant intellectual impairment has had a significant effect on the achievements of individuals with Down syndrome.  People's low expectations of them mean that  children with Down syndrome have limited access to interventions, even with such basic items as spectacles, which would be provided as a matter of course to other children with similar functional impairments.  If we are to maximise the potential of people with Down syndrome we must challenge this presumption of intellectual impairment.

Down syndrome is usually diagnosed at birth (if not before, through amniocentesis).  Depending on the age, training and experience of the diagnosing doctor, the parents may be told within a few days of the child’s birth that their baby is severely, moderately or mildly retarded.  The other professionals with whom the parents come in contact are also likely to have a definite opinion on the intellectual attainments to be expected from a child with Down syndrome.  Their views will vary depending on their experience or the reference sources they consult.  Generalist reference sources may be quite out of touch with more recent developments.  The Oxford Companion to the Mind (1989), for example, says that intelligence is “limited to an IQ of between 20 and 60” and “most die young”. 

Views on the extent of the intellectual impairment 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.  Kirman’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 normal range (Clunies-Ross, 1986).

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 have the ability to handle a regular educational program.  What may well be the case is 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 to attack standardised tests more successfully. 

This re-evaluation 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, and many individuals without intelligible speech or functional hand skills have successfully completed tertiary courses. 

Hand or head - upper limb function and expressive competence
Most people with Down syndrome find speaking difficult.  The obvious alternatives to speech are manual sign or handwriting, both of which require the production of complex motor sequences.  A considerable body of research documents the difficulties that people with Down syndrome have with executing sequences of movements (Kliewer, 1998, 105-110).  Pointing, whether to pictures, words or letters, is less motorically complex, but is often impaired nonetheless.  Anwar and Hermelin (1979) found that in a pointing task, children with Down syndrome had tremendous difficulty changing the angle of their pointing from straight ahead to slightly off-centre.  Repeated movements that required varying angles of gesture, such as typing, were especially challenging.

Problems with hand function obviously impact on the performance of everyday tasks such as tying shoe laces.  It is less often recognised that they also have considerable impact on academic achievement.  Children whose speech limitations are compounded by impaired hand use are virtually locked-in.  They are able to receive information, but not demonstrate that they have received it.  Performance on standardised cognitive assessments and in the classroom will both be affected.

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...".  Others might conclude that motor impairment may influence scores
on tests supposedly measuring only the ability to think.