People with severe and profound intellectual disabilities traditionally have found difficulty communicating with others. Because they rarely communicate using speech or a specific formal signing system they often are reliant on others (non-disabled people) to interpret the meaning of their communication (Grove et al. 1999). Indeed the traditional pattern has been that parents, siblings and staff have got to know the particular sounds, gestures and inflexions that an individual makes and a meaning has been ascribed by the non-disabled person to each specific behaviour. However, as Woodyatt and Ozanne (1992) found, children with profound intellectual disability display preintentional levels of communicative ability—that is, their behaviours may or may not indicate an intent to convey a meaning to another. Furthermore people with such complex disability often have compounding problems such a physical disability, epilepsy, mental health difficulties or, indeed, challenging behaviour—all of which may interfere or limit the communication process. Indeed challenging behaviour may itself be the product of dysfunctional communication processes such that the behaviour is the only method by which the person with the intellectual disability can make his or her needs known.
The purpose of this article is to explore some of the issues in communication for people with multiple and complex disabilities and also to look at which particular skills and methods of communication might be relevant in facilitating each person to engage fully with the world outside.
Understanding the communications of people with profound intellectual disability
In order to communicate people with profound disabilities need to be able to make communication gestures, sounds or movements that are recognised by those around them. Research indicates that this group of people make communicative behaviours quite frequently. Houghton et al. (1987) found that a group of school-age students with severe disabilities made communicative interactions at the rates of one a minute; however, the researchers also found that staff in the school responded to these communications only between 7-15% of the time. Significant people in the life of the person with a disability need to allow that person opportunities to express him/herself- Part of this is done by allowing him the time and space to make communications and maybe express choices. However, as well as that it is clear that close observation of the person with the disability is required in order to identify behaviours that are communications or potential communications.
Observation thus becomes the key method of finding, and eventually interpreting, the communicative behaviours that those with profound intellectual disability make. The checksheet of interactive behaviours (Bunning 1996) is a method that notes the microbehaviours of such people through the process of close observation. These observations can be made by noting the person’s behaviours, watching to see if the person is ignoring what is happening around him, if he is reaching out to something, looking intently at something, making sounds towards something or somebody or playing with something. Through this intense observation a picture can be built up whereby it becomes clear in what circumstances a person communicates, it will also become evident as to what he does to communicate that is what are the elements of his communication map. In general these may include facial expression, eye gaze, whole body movements, body direction, actions and vocalizations (Bradshaw 2001).
Direct observation of the behaviour of the person with a disability is one method of finding about his communications. Another is to ask the people who know him well what is their understanding of how he communicates. This approach works well for service users who have the capacity to express themselves clearly, but it tends to break down when the person with disability displays gestures and vocalisations that may be unclear. The person’s responses may be subtle and difficult to interpret leading to false assumptions being made about the meaning of a behaviour. Some or all of the complete behavioural sequence may go unobserved leading to inaccurate inferences being made which are not based on the complete behaviour. In some situations staff may disagree about the meaning of a behaviour or may agree on the meaning of a behaviour yet all be wrong (Downs 1999). Furthermore the possibility that communications that are thought to be caused by an event external to the person with the disability may in fact be driven by internal mechanisms such as pain or discomfort is noted by Downs (1999).
All these doubts regarding the validity of the interpretations of communication behaviours by non-disabled people should not lead to a dismissal of their views, but should lead to attempts to verify their views by direct observation of the person. The overriding questions will be ‘Is this (behaviour) communication? Is this intentional communication? And how do we know?’ (Porter et al. 2001: 30).
What can we do to better facilitate the communications of those with severe and profound intellectual disability and, by implication, to better understand what they are saying?
Our prime approach as noted above has to be to accurately map the communications of our service users. Checksheets such as the Affective Communications Assessment (Coupe et al. 1985), which asks questions of the non-disabled person that can make clear the meaning of potentially communicative gestures, may be useful. Another approach is to try to find out the effect of the environment on the person with a disability—that is, which environments are likely to stimulate interactive responses and which are not? Where should engagement be anticipated and where is it unlikely? In other words the context for the behaviour needs to be considered in the interpretation of the communicative meaning of the behaviour.
Lastly can assistive and augmentative technology be of help in facilitating genuine communications? There are two types: unaided and aided communication. Unaided communication implies manual signing techniques that require some hand dexterity as well as the capability to understand the iconic nature of the signs. That is each sign has some resemblance to the concept that it represents. Unfortunately manual sign techniques are probably beyond most people with profound disabilities and difficult for those with severe intellectual disability. Mirendo et al. (1991) note reports suggesting that this group of people may not learn more than a few basic signs and that they do not frequently use them spontaneously to communicate.
Aided communication implies using symbol boards (such as Blissymbolics), and computerised devices that convert symbols to synthetic speech, some evidence exists to support the success of these devices with school age students with severe to moderate intellectual disability (Mirenda et al. 1991). However for those with severe and profound disabilities the most effective approaches appear to be to use real objects to represent events or situations. For example, Downs (1999) describes the use of a spoon as a means of indicating to a service user that lunchtime is approaching. When the client has made the association with lunchtime and the spoon, it may be replaced by a picture card of a spoon. As with manual signs, pictures and signs on boards work best where their iconicity is clear, i.e. where there is a strong association between the icon that denotes the concept and the concept itself-
In considering the use of manual signs, pictures and objects of reference as means of enhancing the communications of people with profound intellectual disability, the watchword seems to be adaptability—that is, how can the different approaches be adapted to meet the needs of the person who has the communication difficulty? Communication systems are there to serve the needs of the client and may perhaps best be taken up, changed, adapted and simplified for each individual service user in order to facilitate most effectively the particular requirements of each person.
The main finding from this brief look at the research is that all people display communication ability; our difficulty is that all too frequently we do not recognise it. We must therefore do two things. Firstly we must reflect on how we may best observe the communications of those with profound disabilities in as comprehensive a manner as possible, and secondly we must consider which of our responses are most suited to facilitating the individual to communicate. It may be that augmentative communication techniques can be adapted to enhance the capability to communicate for some people with profound intellectual disability; however, these may only be one tool in a multidimensional approach to the facilitation of communication that is needed for this group of people.