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197 Making sense in a fragmentary world Communication in people with autism and learning disability ILSE NOENS University of Leiden, The Netherlands INA VAN BERCKELAER-ONNES University of Leiden, The Netherlands ABSTRACT The communicative capabilities of people with autism are impaired and limited in significant ways. The problems are charac- terized by a lack of intentionality and symbol formation, which indi- cates that the deviant development of communication in autism is associated with a specific cognitive style. The central coherence theory can offer insight into the specific communication problems of people with autism, since a weaker drive for central coherence leads to problems in sense-making and, consequently, in communication. In the case of the comorbidity of autism and learning disability, the com- munication problems are aggravated. The crucial point is the determi- nation of the level of sense-making, taking this comorbidity into account. Assessment and intervention have to be tuned to individual needs, in order to increase the communicative competence of people with autism and learning disability. ADDRESS Correspondence should be addressed to: ILSE NOENS & INA VAN BERCKELAER - ONNES , University of Leiden, Faculty of Social Sciences, Department of Child Care and Special Education, PO Box 9555, 2300 RB Leiden, The Netherlands. e-mail: [email protected] Introduction Impairments in communication, together with impairments in social interaction and imagination, form Wing’s triad (Wing, 1996; 2001). The difficulties involve both verbal and non-verbal communication. Many publications have been dedicated to these problems. Kanner (1943) men- tioned prominent expressive speech deviations in his first article on autism. Studies of verbal language in autism concern in particular high-functioning people, since there is a strong correlation between intelligence and verbal development. Follow-up research also emphasized the prognostic value of autism © 2004 SAGE Publications and The National Autistic Society Vol 8(2) 197–218; 042723 1362-3613(200406)8:2 www.sagepublications.com DOI: 10.1177/1362361304042723 KEYWORDS autism; central coherence; communi- cation; learning disability

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197

Making sense in a fragmentaryworldCommunication in people with autism

and learning disability

I L S E N O E N S University of Leiden, The Netherlands

I N A VA N B E R C K E L A E R - O N N E S University ofLeiden, The Netherlands

A B S T R A C T The communicative capabilities of people with autismare impaired and limited in significant ways. The problems are charac-terized by a lack of intentionality and symbol formation, which indi-cates that the deviant development of communication in autism isassociated with a specific cognitive style. The central coherence theorycan offer insight into the specific communication problems of peoplewith autism, since a weaker drive for central coherence leads toproblems in sense-making and, consequently, in communication. In thecase of the comorbidity of autism and learning disability, the com-munication problems are aggravated. The crucial point is the determi-nation of the level of sense-making, taking this comorbidity intoaccount. Assessment and intervention have to be tuned to individualneeds, in order to increase the communicative competence of peoplewith autism and learning disability.

A D D R E S S Correspondence should be addressed to: I L S E N O E N S & I N A VA N

B E R C K E L A E R - O N N E S , University of Leiden, Faculty of Social Sciences, Departmentof Child Care and Special Education, PO Box 9555, 2300 RB Leiden, The Netherlands.e-mail: [email protected]

Introduction

Impairments in communication, together with impairments in socialinteraction and imagination, form Wing’s triad (Wing, 1996; 2001). Thedifficulties involve both verbal and non-verbal communication. Manypublications have been dedicated to these problems. Kanner (1943) men-tioned prominent expressive speech deviations in his first article on autism.Studies of verbal language in autism concern in particular high-functioningpeople, since there is a strong correlation between intelligence and verbaldevelopment. Follow-up research also emphasized the prognostic value of

autism © 2004SAGE Publicationsand The National

Autistic SocietyVol 8(2) 197–218; 042723

1362-3613(200406)8:2

www.sagepublications.comDOI: 10.1177/1362361304042723

K E Y W O R D S

autism;central

coherence;communi-

cation;learning

disability

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early speech (DeMyer et al., 1973; Howlin and Goode, 1998; Lord andVenter, 1992; Lotter, 1978; Nordin and Gillberg, 1998; Rutter et al., 1967).Since almost half of the core autistic population does not develop func-tional speech, non-verbal communication is just as important. Moreoverthe impairments in communication are characterized especially by a lackof reciprocity in verbal as well as non-verbal communication. The highcorrelation between IQ and verbal ability implies that most non-verbalpeople with autism also have a learning disability. Comorbidity of thesetwo conditions aggravates the complexity and severity of the communi-cation problems. The development of communicative skills is not onlydelayed due to the learning disability but is also deviant as a result ofautism. Individuals with the two disorders exhibit some overlap in behav-iour, which can cause differential diagnostic problems, but differ in cog-nitive functioning (see also O’Brien and Pearson, this issue). Althoughthese conditions are closely linked, they cannot be placed into one diag-nostic category (Ghaziuddin, 2000; Kraijer, 1997; Rutter and Schopler,1987). In our opinion it is the difference in cognition that particularly dis-tinguishes between the disorders.

Recent cognitive-psychological studies have tried to gain a betterinsight into the connection between observable behaviour on the one handand neurobiological dysfunctioning on the other. Various constructs havebeen proposed, but ‘theory of mind’, ‘executive functions’ and ‘centralcoherence’ are currently the most prominent. Bailey et al. (1996) distin-guish between theories with a narrow perspective and theories with abroad perspective. The former concern a deeper understanding of thebehaviour of people with autism from the standpoint of a specific cogni-tive dysfunction. The best-documented account in this respect is theory ofmind, which suggests that the social-communicative problems of peoplewith autism are the consequence of an incapacity to attribute mental statesto oneself and others (Baron-Cohen, 1995; Baron-Cohen et al., 1985). Thetwo others are much broader and also try to explain the non-social featuresof autism. The executive functions theory suggests that shortcomings inplanning, flexibility, organization and self-monitoring are the coreproblems in autism (Ozonoff, 1995; 1997; Ozonoff et al., 1991; Russell,1997). Bailey et al. (1996) describe the executive functions as an umbrellaterm for a constellation of mental operations, not all of which have yet beendelineated. The central coherence account rationalizes autism as a weakerdrive for the integration of information. Central coherence is the naturaltendency to process incoming stimuli globally and in context, pullinginformation together to acquire the higher-level meaning. People withautism, however, tend to process incoming information locally and piece-meal (Frith, 1989; Frith and Happé, 1994; Happé, 1999).

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The mutual relationships between these theories are as yet unclear. Oneof the problems researchers encounter is the high frequency of comorbidity(Fombonne, 1998; Gillberg and Coleman, 2000; O’Brien and Yule, 1995).Autism occurs not only with learning disability but also with ADHD,Tourette syndrome and many other disorders. With respect to explainingthe enigma of autism, only individuals with the core syndrome should beconsidered before valid and reliable statements about the specificity of thedifferent cognitive theories can be made.

In our opinion, central coherence theory offers the best potential forexplaining behavioural features in the event of the comorbidity of autismand learning disability, since problems encountered in theory of mind andexecutive functioning can also be the result of the learning disability(Noens and Van Berckelaer-Onnes, 2002a).

The problems individuals with autism encounter when integratingstimuli they feel, taste, smell, see and hear have a huge impact on theirsense-making and thus communication. The question is whether the weakdrive for central coherence is a deficit or a style (Happé, 1999). On the onehand the specific cognitive style leads to difficulties in combining experi-ences into a meaningful whole, but on the other hand it facilitates specialabilities or ‘bright splinters of the mind’, as described by Hermelin (2001).Whether cognitive style or cognitive deficit, the problems in sense-makinggreatly hinder people with autism in their daily functioning. Although thecomorbidity of autism and learning disability is so complex that it is verydifficult to distinguish cognitive style and cognitive deficit, it needs to bedone. The learning disability as such is not a style but a general cognitivedeficit which, when comorbid with autism, is further aggravated by theweak drive for central coherence. Both disorders have a serious impact ondaily functioning and have to be taken into consideration during assess-ment and intervention.

In this article the following topics will be discussed: the main problemsof communication in autism; the relationship between sense-making andautism; and finally the implications for assessment and intervention.

Autism and communication

The dual diagnosis of autism and learning disability implies a complexcommunication problem. Qualitative impairment in verbal and non-verbalcommunication is generally recognized as a key feature of autism. Earlydelay or regression in the development of language is often among the firstproblems encountered by parents of children with autism (Howlin andMoore, 1997). Prelinguistic communication behaviours, such as babbling,eye contact, facial expressions and gestures, are usually more limited in

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range and complexity and often are not used to initiate or maintain inter-actions with significant others (Howlin, 1999).

Approximately one-third (Bryson, 1996) to one-half (Lord and Paul,1997) of the individuals with autism do not develop sufficient naturalspeech to meet their daily communication needs. The spontaneous speechof verbal people with autism is frequently idiosyncratic. They displaystriking features like immediate and delayed echolalia, the use of metaphorsand neologisms, pronoun reversal and prosodic peculiarities (Howlin,1999; Jordan, 1999; Lord and Paul, 1997; Van Berckelaer-Onnes, 1996;1997). Most literature covers the expressive speech problems of peoplewith autism. Little attention has been directed to their comprehensionproblems. Even among those with functional speech, understanding is fre-quently more limited than what would be expected on the basis of theexpressive vocabulary (Lord and Paul, 1997). The extent to which peoplewith autism understand speech is usually overestimated. Schuler et al.(1997) postulate that language is often only understood in highly familiarcontexts; probably the individual is not really responding to the speechitself but is responding to the routine within its situational context or toother cues such as the location in space.

Some people with autism have no speech at all; in other cases the speechconsists of a few words only; others are very long-winded; but in all casesreciprocal communication is very poor (Lord and Paul, 1997; Tager-Flusberg,1999; Wetherby et al., 2000; Wing, 2001). Language is seldom used as acommunicative means; it seems like a monologue instead of a dialogue. Inthis respect it is comprehensible that communication problems play a crucialrole in the interaction problems that are so characteristic of autism.

There are a few strong reasons to pay attention specifically to thecomplex communication problems of people with autism and learning dis-ability. In the first place a recent follow-up study (Howlin et al., 2000;Mawhood et al., 2000) has confirmed that the communication problemsare very persistent and closely related to subsequent prognosis. The level ofcommunicative competence thus seems to be an important outcome pre-dictor. A second reason is more clinical in nature. Research has shown thatthe impairment in communication is one of the greatest sources of stressfor parents (Bristol, 1984). Therefore communication enhancement shouldbe a major focus of education and intervention (Wetherby et al., 2000).Finally, in many cases the challenging behaviour of people with autismappears to be the result of communication impairments (Van Berckelaer-Onnes et al., 2002). The study of Sigafoos (2000) shows that deficits inreceptive language, in comparison to expressive language skills, are morestrongly associated with severe aberrant behaviour. In that respect peoplewith autism and learning disability constitute an especially vulnerable

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group. As mentioned above, their receptive communication is usuallyweaker than their expressive communication. Subsequently, people withautism are often approached from a level above their general level of under-standing, which is a major pitfall in education and intervention.

In the past decades a growing body of literature has appeared on thespecific communication problems of people with autism. In recent publi-cations (Travis and Sigman, 2001; Wetherby et al., 2000) two core problemareas have been identified: intentionality and symbol formation.

Limited intentionality and symbol formationAccording to Bates et al. (1979) there are two main transitions in earlychildhood that precede the development of language. The first is thedevelopment of communicative intentionality. During the last 3 months ofthe first year, most infants begin to show awareness of the fact that theirsignals influence the behaviour of other people (Warren and Yoder, 1998).The second transition concerns the understanding of symbols. Around theage of 11 to 13 months, children start to realize that signs are both substi-tutable for and separate from their ‘referents’, which enables them toacquire symbolic gestures, words and play (Wetherby et al., 1998).

Communicative intentionality is usually first seen in protoimperative(requesting) and protodeclarative (commenting) situations. Both functionsrequire the infant to shift attention between a partner and an object. Request-ing behaviour indicates that the child wants something and is usually sus-tained until the goal is reached or becomes unreachable, while commentingbehaviour is the act of drawing someone’s attention to an object or event(Warren and Yoder, 1998). The emergence of pointing is a very importantmilestone because it is a precursor of joint attention (Mundy et al., 1994).In children with autism, grasping does not spontaneously pass into pointing,and if pointing develops, it is usually pointing to get (protoimperative)rather than to share (protodeclarative) something (Baron-Cohen, 1989;Carpenter et al., 2002; Goodhart and Baron-Cohen, 1993; Newson, 2001;Newson and Christie, 1998; Noens and Van Berckelaer-Onnes, 2002a).

Most publications about communication in autism focus on com-municative means (such as gestures, speech and language). More crucial,however, is the fact that people with autism have a restricted grasp of theconcept of communication, which severely limits their communicative com-petence (Prizant and Schuler, 1997).

People with autism not only encounter difficulties in communicatingintentionally, but usually do not understand sufficiently the symbolic aspectsof communication. According to Bates et al. (1979) the use and compre-hension of symbols implies an understanding of the relationship betweena sign and its referent. A sign is something that represents something else;

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a symbol is a sign where the relationship between the sign and its referentis arbitrary and agreed upon by convention. The symbol belongs to thereferent and can replace that referent in a variety of situations. Essential isthe awareness that the symbol and the referent are two completely distinctentities. In normal development, the first conventional gestures (i.e. wavingand pointing), the first words and the beginning of functional play aregradually less dependent on a specific context, which announces the tran-sition to symbolic behaviour (Travis and Sigman, 2001).

In autism, these protosymbolic behaviours take longer to develop, orthey may disappear having once emerged. Children with autism often useprimitive presymbolic gestures, such as taking someone’s hand. At bothemerging and more advanced language levels, children with autism fre-quently display a long period of context dependent, echolalic and idiosyn-cratic use of language (Prizant et al., 1997; Wetherby et al., 2000). Theproblems in symbol comprehension are also recognizable in higher-functioning people with autism, since they rarely realize that communi-cation is about intended rather than literal meanings (Tager-Flusberg,1999). They tend to have great difficulty understanding non-literal or fig-urative speech (such as metaphors, idioms and irony) and their ownlanguage is usually described as being rigid and concrete (Happé, 1995).

The two identified problems inevitably constitute the major challengesin the education and treatment of people with autism and learning dis-ability. It is not the mere acquisition of verbal or other communicativebehaviours but rather the stimulation of communicative competence thatshould be the primary focus of attention. When communicative com-petence is increased, quality of life can improve substantially.

On the basis of the limited symbol formation, it is presumed that theabnormal development of communication in autism is correlated with aspecific cognitive style. In order to stimulate communicative developmenteffectively, communication deficits should be conceptualized in terms of aproblem in the perception of meaning.

Perception, sense-making and communication

The central coherence theory mentioned above can offer insight into thespecific language and communication problems of people with autism,because communication is considered a cognitive process in which per-ception plays a crucial role (Noens and Van Berckelaer-Onnes, 2002a).Communication is in essence sense-making, the exchange of meanings.Because of the weaker drive for central coherence, sense-making in particu-lar is problematic in autism. Consequently, people with autism experienceserious language and communication problems.

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Before linking the central coherence theory to the specific features ofcommunication in autism, it is useful to make a distinction betweensensation and perception. According to Levine (2000), sensation is theprocess of detecting a stimulus (or some aspect of it) in the environment.Perception refers to the way in which the information gathered by the sensesis interpreted; it is the central processing of incoming stimuli (Goldstein,1999). Autism is not a disorder of the sense organs. In principle peoplewith autism feel, taste, smell, see and hear. The way they do so differs indi-vidually. For some individuals mere sunlight or the label in a jumper canbe very troubling; others cannot stand the sound of a vacuum cleaner. Onthe other hand, people with autism sometimes show hardly any reactionto striking stimuli such as loud noises or pain. The phenomena of hyper-and hyposensitivity occur more frequently in autistic people, possiblybecause of their difficulties with the integration of experiences (percep-tion). Adequate sense-making is missing or needs to be constructed stepby step, as the following example illustrates.

Van Dalen (1994), a high-functioning man with autism, describes thesuccessive steps he needs to reach the functional concept of a hammer. First,he perceives details (‘wood and iron’). Next, the details are combined intoa coherent whole, which leads to the association with a label (‘hammer’).Finally, he can imagine the functional and invisible meaning of the hammer(‘it’s a thing to use in carpentry’). People without autism perceive the func-tional meaning of the hammer at a glance. Van Dalen’s description under-lines the weak drive for central coherence and, therefore, sense-making,which implies serious consequences for communication. In the event ofcomorbidity of autism and learning disability, the problems in sense-making and communication will be even more serious.

Verpoorten (1996) described communication in a multidimensionalmodel as a subtle interplay of different modalities (vocal and non-vocal),wherein messages (content) are being shared with a specific function(intention). Furthermore communication always includes a social aspect(reciprocity). And, finally, the style of communication partly defines theeffectiveness of communication.

People with autism cannot spontaneously achieve full integral percep-tion of all dimensions in communication (Noens et al., 2000). Their per-ception of communication is rather fragmentary. As already mentioned,people with autism primarily perceive the world in fragments (Frith, 1989;Frith and Happé, 1994; Happé, 1999); details seem to have the highestpriority. For adequate sense-making, however, the context is indispensable.

By nature, our communicative modalities (speech and non-vocal cues)are very transient (Prizant and Schuler, 1997; Wetherby et al., 2000). Theyrequire extremely fast, sequential and multimodal processing of auditory

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as well as visual information. After all, each communicative interaction isdifferent from the preceding one. A massive number of factors needs to betaken into account simultaneously in a specific context (Frith, 1989). Inthis respect, it is not surprising that people with autism learn to com-municate intentionally only with great difficulty.

The specific perception style also explains the problems in symbol for-mation. Many people with autism are not able to understand objects,gestures and words functionally, especially if they also suffer from alearning disability. For example Peter, a 5-year-old boy with autism andsevere learning disability, suddenly didn’t want to drink anymore. He lostsight of the concept of ‘drinking’ because the green beaker was replaced bya red one. Over-selectivity characterizes the perception style of people withautism (De Clercq, 1999).

Even for verbal people with autism, sense-making is often fragmentaryand literal. A few examples might illustrate this notion. Phillip, a 5-year-old boy with autism, was playing tennis. Before hitting the ball, he pushedthe ball against his eye. To the question of why he was doing so, Phillipreplied: ‘Mummy told me I had to keep an eye on the ball!’ Phillip’s answershows that the literal understanding of language inevitably causes problemswith the comprehension of idioms.

The occurrence of neologisms can be viewed in the same light. Aaron,a 10-year-old boy with autism, consistently asked for the ‘tankshon’ in thebathroom every morning. His mother had really no idea what he wantedand Aaron did not know how to explain it in other words. Aaron is verbally‘able’ but has serious communication problems. He was asking for hair gel.How could he substitute ‘tankshon’ for ‘gel’? Within the framework of thecentral coherence theory this is explainable. Aaron associated the word ‘gel’with ‘Shell’ (the Dutch oil company), which was further connected with‘petrol station’ or in Dutch ‘tankstation’. The sense-making, again, is veryfragmentary, associative and literal.

‘Look, the birds are flying over!’ This seemed a senseless echolalic utter-ance by Nico, an 8-year-old boy with autism and severe learning disability.Then his parents found out that he always said it when he wanted some-thing to eat, for he had seen a video in which the same sentence was utteredin a conversation during a meal. The sentence and the eating scene wereliterally perceptible at the same time. The sentence turned out to be ametaphor, which occurs regularly in autism.

In this respect, the publications of Prizant, Rydell, Schuler and Wetherby(Prizant, 1983; Prizant and Schuler, 1997; Prizant et al., 1997; Schuler,1995; Wetherby et al., 1997; 2000) on gestalt language and cognition inautism offer an interesting approach. Prizant conceptualizes gestaltlanguage forms as ‘multiword utterances that are learned as memorized

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forms or whole units but may appear to be the result of productive linguis-tic processes or the application of combinational rules’ (1983, p. 299). Hepresumes that the speaker who uses such forms is not acquainted with theirinternal semantic-syntactic structure. Gestalt language forms refer to agestalt mode of cognitive processing, in contrast to an analytic mode inwhich experiences and events are analysed and segmented into meaning-ful components. Individuals with autism tend to use gestalt forms andgestalt acquisition styles in language and communication. Immediate anddelayed echolalia can be understood as manifestations of such a gestalt pro-cessing style.

The ideas on gestalt language in autism may appear contradictory inrelation to the detail-focused processing style as predicted by the centralcoherence theory. Yet this is not the case, because adequate sense-making isa prerequisite for meaningful analyses and segmentation. If one is unable tointerpret multiword utterances meaningfully, it is impossible to split theminto significant components. Consequently, they can only be learned asmemorized chunks (or ‘gestalt language forms’ as defined by Prizant, 1983).

The relationship between perception and communication might alsocontribute to the explanation of pronoun reversal in autism. Who is ‘I’ andwho is ‘you’? The answer is relative and can only be given when a specificcontext is taken into account. Pronoun reversal presumably reflects a moregeneral problem with deixis, the change of referent (as conceptualized byBates et al., 1979) depending on the point of view of the speaker (Lord andPaul, 1997). Other relative notions like ‘upstairs’, ‘yesterday’ and the tensesof verbs might be just as difficult because their meaning depends on theposition in space or time.

The examples above illustrate the strong association between perception,sense-making and communication. The exact level of sense-making shouldbe determined for a more differentiated approach. Sense-making and com-munication can take place roughly at the following four levels: sensation,presentation, representation and metarepresentation (Verpoorten, 1996).

The level of sensationAt first infants experience their world at the level of sensation. They expressthemselves, for example, by crying or sucking. They learn to react to theirenvironment and spontaneously recognize the relationship between actionand reaction, such as crying and getting attention. In a very natural wayinteraction and communication become more and more reciprocal.

The level of presentationAt the level of presentation the child perceives information in a concretecontext. The child gradually learns to communicate actively in the present

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situation. At first the child reaches towards a desired object, for example abeaker, trying to grasp it. Later he or she learns to point. The child looks atthe cookie, points at it, makes eye contact and babbles to emphasize his orher request. At this stage the child is already able to combine the complextasks of looking, pointing, making eye contact and babbling.

The level of representationWhen language in the sense of speech exists, the level of representation isapproached. The word ‘beaker’ represents the object. If children do notspeak but know that an object, a gesture, a photograph or a pictogram refersto the action ‘to drink’ (while the drink is not within sight), then the levelof representation has been reached. They understand the hidden meaning,the reference function of the object, the gesture, the photograph or thepictogram. The development of object permanence is a necessary conditionto achieve the level of representation. By using a symbol, one needs to beable to represent (or imagine) the referent while that referent in theconcrete form is not present (Piaget, 1952; Werner and Kaplan, 1963). Thereferent presents the meaning of the symbol, which can be a perceptual ora conceptual object. The referent and the meaning are thus directly related,while the symbol and the referent are only indirectly related (Bates et al.,1979). Representation implies a certain amount of awareness that thesymbol and the referent are not identical, but two clearly different entities.

The level of metarepresentationMetarepresentation is reached when information is given beyond the literalmeaning, for example by saying a sentence in a way that others know thatit is a joke. Human language is full of metarepresentations hidden inproverbs, expressions, irony etc. Primary messages often contain a second-ary message. In fact, messages in which only the primary content countsare so rare in common conversations that people usually tend to attributesecret messages to the primary content, even if that is absolutely not neces-sary (Frith, 1989).

People with autism rarely reach the level of metarepresentation, as illus-trated by the examples above, but in the case of the comorbidity of autismand learning disability even the levels of presentation and representationare not always mastered. They remain at the level of concrete literalism. Ahuge pitfall lies in the fact that some people do have speech at their disposalbut fail to communicate with speech at the level of representation. As such,some are able to label objects, photographs or pictograms, while theycannot imagine their functional meaning. This means that they wouldsucceed in naming a beaker or even a photograph of a beaker, withoutunderstanding that they were going to get a drink. One could consider

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these utterances indexical rather than symbolic, since they are an index ofor associated with the (photograph of the) beaker. In true symbolic com-munication, the symbol stands for and is separate from its referent (Wernerand Kaplan, 1963; Wetherby et al., 2000). This does not imply that peoplewith autism are not able to communicate. Even at the levels of sensationand presentation, communication is possible. However, for individualizedintervention, the crucial point is determination of the level of sense-making.

Implications for assessment

With respect to the identified core problems of limited intentionality andsymbol formation, two themes deserve extra attention in the assessment ofthe communication problems of people with autism and learning disability.

First, the communicative competence should be evaluated thoroughly. Whereasin the past the communicative means were the main focus, at present thetendency is also to emphasize the communicative functions (Prizant andSchuler, 1997; Schuler et al., 1997; Tager-Flusberg, 1999; Twachtman-Cullen, 2000). The question of which means an individual has at his or herdisposal to pass on a message is really relevant, but the ultimate questionto answer is what the intention of the individual is at that moment. Forinstance, assessment concerns not only whether someone is pointing, butalso whether he or she is doing so to get something or to comment onwhat is happening in his or her environment.

Communication is an adaptive skill, which should be considered againstthe background of the overall individual functioning. Many differentmethods can be used for the information-gathering process. Observationsof the communicative behaviour in a variety of natural environments arevery valuable. It is important to observe structured as well as unstructuredsituations, since the behaviour of people with autism can differ consider-ably. Conversations with parents, caretakers, teachers and similar significantothers can offer a valuable contribution. Semi-structured interviews suchas the Vineland Adaptive Behavior Scales (VABS: Sparrow et al., 1984), theDiagnostic Interview for Social and Communication Disorders (DISCO:Wing, 1999) and the Autism Diagnostic Interview–Revised (ADI–R: Lordet al., 1994) are very suitable within the framework of evaluation of overallfunctioning. All three instruments contain questions covering the domainof communication. Where the VABS is focused on adaptive functioning, theDISCO and the ADI–R mainly assess maladaptive behaviour patterns.

Second, the capacity for symbol formation must be the focus of attention.Within the scope of central coherence theory, determination of the levelof sense-making is extremely important. Clinicians tend to use referring

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communication systems, such as pictograms or photographs, too easily,without first checking whether the individual is functioning at the levelof representation. A level of approach that is too high can lead to severechallenging behaviour.

An instrument for the evaluation of perception and sense-making inrelation to communication is under development at the University ofLeiden, Department of Child Care and Special Education. The Forerunnersin Communication–Experimental Version (ComFor: Verpoorten et al.,2001) is a test to obtain a precise indication of individualized communi-cative interventions, in particular augmentative means adapted to the levelof sense-making. The target group consists primarily of people with autismlacking or with only limited verbal communication. The ComFor tries tomeasure sense-making in connection with the central processing of stimuli(‘perception’) at the levels of presentation and representation. At the levelof presentation, associations have to be made on the basis of literally per-ceptible information (i.e. sorting of identical knives, spoons and forks);whereas on the level of representation, sense-making goes beyond the lit-eralness of information (i.e. sorting knives, spoons and forks from differenttypes of cutlery). The levels of sensation and metarepresentation are left outof consideration. However, if an individual does not meet the conditionsfor the level of presentation, communication should be realized at the levelof sensation. Full details of the ComFor will be given in a separate publi-cation (Noens et al., in preparation).

From insight to interventionA single intervention for the communication problems of people withautism and learning disability does not exist. Not only large differencesbetween individuals with autism and learning disability, but also differencesin theoretical approaches, lead to a great variety in intervention methods.According to Prizant et al. (2000) the different orientations are situated ona continuum, with traditional behavioural approaches (such as discrete-trialtraining) at one extreme and developmental social-pragmatic approaches atthe other extreme.

The traditional behavioural treatment programmes that predominatedin the 1970s and 1980s provided training in all sorts of abilities (includ-ing speech, language and communication) in a one-to-one situation by theapplication of imitation, prompting and reinforcement techniques. Therationale was Lovaas’s (1977; 1981) postulate that people with autismwould not learn enough in more natural environments, on the one handbecause they experience serious attention and learning deficits, and on theother hand because there is no opportunity to exercise and reinforcesystematically in spontaneous interactions. Wetherby et al. (1997) noted

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the necessity to distinguish between cued response and the acquisition oftrue communicative behaviour. Many individuals with autism do quite wellin the situation-specific recall of unanalysed chunks (‘gestalt forms’), butthese responses should not be mistaken for truly communicative behaviour.

Viewed in the light of developmental social-pragmatic approaches, thedevelopment of communication requires the social context of spontaneousevents in everyday life, for the ultimate goal is the stimulation of com-municative competence (Prizant et al., 2000; Wetherby et al., 1997). Indi-viduals with autism can make great progress in individual training sessions,but that does not imply that they are able to apply the learned skills in dailylife. The generalization problems in autism demand interventions withineveryday situations. A recent review of eight studies comparing discrete-trial and normalized behavioural language intervention for children withautism (Delprato, 2001) shows that normalized training was more effec-tive than discrete-trial training. In addition, studies in which parental effectwas measured favoured normalized treatment.

In our opinion, a developmental approach is preferable to a traditionalbehavioural approach (Noens and Van Berckelaer-Onnes, 2002a; Prizantet al., 2000). Taking the central coherence theory as a starting-point, thedevelopmental social-pragmatic approach meets the needs of people withautism better with respect to the problems in sense-making, although nor-malized behavioural principles can be useful tools within a broader social-pragmatic approach. In order to facilitate communicative competence, theintentionality of communication should be the primary focus of attention.Protointentional skills such as turn-taking and pointing are of considerableimportance (Newson, 2001; Newson and Christie, 1998). A common faultin the treatment of people with autism is to try to teach them a variety ofskills, while the individual has not mastered the prerequisite fundamentalsfor these skills.

In intervention programmes one should make allowances for the limi-tations in symbol formation, which are, as mentioned before, connectedwith a fundamentally different perception style. Mere verbal communi-cation is insufficient to lead to correct sense-making. Augmentative com-munication is an indispensable aid for individuals with autism and learningdisability, irrespective of their level of functioning.

Individualized augmentative communicationThe term ‘augmentative communication’ refers to the totality of strategiesand techniques to augment communication, in addition to the naturalgestures, vocalizations or speech of the individual. Traditionally, augmen-tative communication was mainly used to augment expressive communi-cation; more recently, it has also been used to support comprehension

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(Light et al., 1998). For people with autism the latter is of crucial import-ance, since receptive communication is usually even weaker than expres-sive communication.

Augmentative communication should be realized in an individualizedmanner. To do so, two core issues need to be addressed: first, the mostsuitable ways to augment communication; second, the level of sense-making at which the means chosen can be offered (Noens et al., 2000).With respect to the question of the form of the augmentation, communicativemeans with a concrete, spatial structure such as objects, pictograms, photo-graphs, line drawings and written text are preferable within the frameworkof central coherence theory. Means with a temporal structure such asgestures are much harder to perceive for people with autism because theyare transient and require sequential processing. Furthermore, people withautism usually have problems with imitation, planning and coordination,which are essential skills for learning gestures (see also Mirenda andErickson, 2000).

The ComFor helps to determine which non-transient, spatial com-municative form (objects, pictograms, photographs, line drawings orwritten language) is the best fit. Naturally, this is also dependent on the levelof functioning of the individual. A common misconception in clinicalpractice is the idea that photographs are ‘easier’ than pictograms. For peoplewith autism this often is not the case. In photographs the connectionbetween the symbol and the referent might be more self-evident (i.e. havegreater ‘iconicity’: see Lloyd and Blischak, 1992), but they also containmore distracting details.

With respect to the second question it is necessary to realize that the useof augmentative communication should be adapted to the level of sense-making. Inpractice objects are usually used as symbols (such as passing an emptybeaker to announce ‘drinking coffee in the canteen’), even for people whocannot imagine the functional meaning of the object. One must not ignorethe fact that the use of objects as symbols at least requires sense-making atthe level of representation, for the meaning (drinking coffee in the canteen)is invisible (hidden in an empty beaker). An individual functioning at thelevel of presentation only understands the functional meaning of an articleof use (the beaker) within the concrete situation (standing before the coffeemachine in the canteen). At the level of sensation the beaker is no more thana smooth something, which makes a nice sound when tapped.

The same misconception applies to the use of pictures. Too often peoplewith autism and learning disability are confronted with symbol com-munication systems they do not understand. The use of pictures as symbolsclearly parallels the use of words as symbols and thus links languagedevelopment to the development of picture use (Stephenson and Linfoot,

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1996). According to Sigel (1978), it is useful to distinguish betweenpicture recognition and picture comprehension. Recognition of a depictedobject is not equivalent to understanding the nature of pictures or therelationship between a picture and its referent (DeLoache and Burns,1994). As mentioned before, an important pitfall is the fact that somepeople with autism are able to label photographs or pictograms, while theycannot imagine their functional meaning.

Symbolic communication techniques are only useful for individualsfunctioning at the level of representation. That does not imply, however,that augmentative communication is useless when making sense at thelevels of sensation and presentation.1 At the level of presentation, the useof functional objects is limited to the specific ‘here and now’ of the concretesituation, which implies that it is not possible to predict any future events.Matching and assembling procedures (i.e. fitting two pieces together as ina jigsaw puzzle) are valuable in order to avoid this problem. For example,comprehension of a pictogram is not required for matching a pictogramof a lavatory with an identical pictogram fixed at the door of the lavatory.The same applies for placing a roll of toilet paper on a holder in the lavatory.

When teaching augmentative communication at the level of presen-tation, it is essential that the object or the picture be introduced at the placeof the destination. The activity has to start immediately after matching orassembling, so that the correct association can take place. Afterwards, thedistance can be enlarged via backwards training. For example Chris, a 4-year-old boy with autism and severe learning disability, learns to bring abeaker to the holder on the table. The first time he is allowed to place thebeaker in the holder together with the caretaker. Immediately after the care-taker gives Chris a drink. The next time Chris places the beaker in the holderall by himself. Each time he is given the beaker a little bit earlier. Step bystep the distance between the beaker and the holder increases. How far thedistance between the beaker and the holder can be enlarged depends onthe level of functioning of the individual. The capacity of object perma-nence is very significant. Lower-functioning people are only able to matchor assemble when the goal is within sight, whereas others can bridge largedistances.

For people making sense at the level of sensation, announcing anactivity is impossible, but sensory experiences can gain a signallingfunction. Catherine, an 8-year-old girl with autism and severe learning dis-ability, understands the world primarily at the level of sensation. She relieson sensory experiences which trigger an association with an activity. Foreating she wears a bib, for gym a jacket and for playing outside a hip-purse.The sensations should be considered as mere signals, making the situationrecognizable, not as symbols making the situation predictable.

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Some considerations on PECS and TEACCHWithin the scope of augmentative communication it is useful to considerfurther some common intervention programmes. The Picture ExchangeCommunication System (PECS: Bondy and Frost, 1994; 2002) fits withinthe framework of applied behaviour analysis and makes use of discrete trialand incidental learning formats. An individual is taught to exchange apicture for a desired item or activity. Once he or she masters that principlein a variety of requesting formats, other communicative functions such ascommenting are addressed.

PECS makes use of pictures as symbols which, in our opinion, indicatesthat sense-making on the level of representation is a prerequisite for theprogramme. This consideration applies for all sorts of existing communi-cation systems such as Makaton (Walker, 1980). It cannot be emphasizedsufficiently that augmentative communication should be adapted to theprecise level of functioning. A second consideration is the fact that theprimary focus of attention in PECS is the teaching of expressive communi-cation. It must not be forgotten that people with autism and learning dis-ability also need augmentation of receptive communication in order tomake their environment surveyable and enhance their grip on thesurrounding world.

TEACCH (Treatment and Education of Autistic and CommunicationHandicapped Children) was developed in the 1970s in North Carolina bySchopler and Mesibov and is one of the most commonly known and usedintervention programmes (Schopler and Mesibov, 1995). It is a whole lifeapproach to helping people with autism, based on the principles of struc-tured teaching and using the individual’s visual strengths to augment com-prehension. A main principle underlying TEACCH is that if the person cansee it, he or she is more likely to understand it and be able to do it. Thereare four main strategies: physical structure; daily schedules or timetables;work systems; and visual clarity within tasks.

Emphasizing comprehension is commendable within the context of thecentral coherence theory, but – again – more attention should be directedto the way the individual makes sense of the world. For many lower-func-tioning individuals with autism, seeing would not be enough. TEACCHthen advises tangibles, but these are also mainly used as objects of refer-ence at the level of representation or within their direct functional contextat the level of presentation. As we noted earlier, the use of functional objectsis limited to the ‘here and now’ of the present situation; the prediction offuture events is impossible.

Since people with autism and learning disability perceive the world pri-marily in fragments, the natural sequence is missing. Therefore they haveto be taught the sequence step by step. Daily schedules are usually indicated

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on shelves or in cupboards (objects), on boards or in diaries (pictures andwords). The top-down or left–right orientation of these schedules isrepresentative by nature, consequently causing problems for lower-functioning individuals. It is clearer to use stacked boxes to indicate theorder of activities at the level of presentation. When the top box is emptyand further removed, the next box shows the following object or picture.

Summarizing, TEACCH is a very valuable intervention approach, whichhas a major positive impact on the treatment of people with autism.However, as far as communication enhancement is concerned, it should bereviewed critically with respect to current knowledge about perception,making allowances for the various levels of sense-making.

Conclusion

Although autism can only be diagnosed at the behavioural level, researchat the level of cognition has generated very useful information. The centralcoherence theory offers insight into the complex communication problemsof people with autism and learning disability. A clear understanding of theirfundamentally different way of making sense of the world offers starting-points for assessment, but is especially of interest for the stimulation ofcommunicative competence. If communication is tuned to individualneeds, the quality of life for people with autism can increase substantially.

AcknowledgementsDuring the period of this work the first author was supported by a grantfrom Foundation Effatha-Guyot. This article was submitted in part fulfil-ment of her PhD degree at the University of Leiden.

Notes1 The video production In OTHER Words: Augmentative Communication for Children with Autism

and Learning Difficulties (Noens and Van Berckelaer-Onnes, 2002b) shows how toaugment communication at the levels of sensation and presentation. Copies of thevideo can be obtained from the authors.

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