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Augmentative and alternative communication: a review of current issues
SYMPOSIUM: SPECIAL NEEDS
Augmentative and alternative communication: a review of current issues
methods of speech and/or writing where these are impaired or insufficient to meet the individual’s needs. AAC may also have a role where the child is having difficulty learning speech and language. In this and other cases, children may use AAC in the short to medium term or as their life-long means of communication. Whilst AAC is usually thought of as an ‘output’ system, a means for someone to express themselves, AAC can also be used to support the person’s understanding of language and communication. AAC is equally appropriate for children and adults, but in this review we will focus on children and young people for whom natural speech is unlikely to be their primary means of communicating. We will describe the major client groups below. There are many different types of AAC, including: eye-pointing, natural gesture, and use of manual signs, all of which are regarded as ‘no-tech’ or unaided systems photographs, symbols, and word boards, which are considered to be aided but ‘low-tech’ systems speech output devices, which include ‘light-tech’ simple battery-operated, single-message devices speech output devices which also include ‘high-tech’ aided systems; these are typically highly complex and flexible computer-based pieces of equipment known as voice-output communication aids in the UK and speech-generating devices in North America. Sign languages, in the sense of the natural languages of deaf people (e.g. BSL, ASL), are a specific aspect of AAC, often dealt with separately in the literature and in practice. Some children, however, may use signs taken from for example BSL within their AAC system.
Janice Murray Juliet Goldbart
Abstract Augmentative and alternative communication (AAC) includes a range of approaches aimed at supporting or replacing speech for children and others for whom natural speech is not sufficient to meet their needs. For some children it also offers a support to the process of language learning. A wide range of medical conditions may lead to a child requiring AAC, either temporarily or on a more permanent basis. AAC systems may be unaided or aided, in the sense of requiring some form of equipment. They vary on the level of technology required from none to specialized computer-based devices offering synthesized speech output. Management of children requiring AAC must involve parents and a multidisciplinary team of health and education professionals, in addition to active involvement on the part of the child.
Keywords AAC; augmentative and alternative communication; communication aid; dysarthria; language; non-verbal; non-vocal
Aims AAC systems
In this review we will: define augmentative and alternative communication (AAC) outline the forms AAC may take and provide a taxonomy of types of AAC provide some prevalence data on AAC use describe the children who are likely to benefit from use of AAC consider the implications e both advantages and disadvantages e of learning language through atypical means provide guidelines for engagement with children who use AAC in health settings provide suggestions for further reading. We will not consider the use of sign languages by deaf people or the deaf community.
There is more to AAC than the right piece of equipment, especially when the person using it has significant physical impairment or learning difficulties. Consequently, it is more useful to think of AAC systems as comprising four interconnected components. The mode. This covers, in gross terms, the components (no-, low-, light- and high-tech) described above, the method by which the message is being sent to the communication partner. As we have described, this could be anything from the direction of the child’s gaze to the words generated from a computer-based speech output device. The means by which the child accesses the communication mode. Direct access involves pointing, or pressing the keys on a keyboard. Children with very severe physical involvement, however, may not be able to access the communication mode directly. In this case they will need to be taught to use an indirect approach: for example, using a scanning system involving one or two switches. The representational system. In typical conversation we use spoken words to represent the meanings we want to convey. In AAC many different types of symbol set may be used; written words or letters, photographs, line drawings, or a formalized set of symbols such as Blissymbols or Picture Communication Symbols. The use of symbols which appear less abstract in relation to the words or ideas they represent is often seen as a facilitating the child’s acquisition of language.
What is AAC? AAC includes any method of communicating that supplements (augments) or replaces (provides an alternative to) the usual
Janice Murray BSc PhD is Principal Lecturer in Speech Pathology at the Faculty of Health, Psychology & Social Care, Manchester Metropolitan University, Manchester, UK. Juliet Goldbart BSc PhD is a Professor of Developmental Disabilities at the Faculty of Health, Psychology & Social Care, Manchester Metropolitan University, Manchester, UK.
PAEDIATRICS AND CHILD HEALTH 19:10
464
Ó 2009 Elsevier Ltd. All rights reserved.
SYMPOSIUM: SPECIAL NEEDS
Sometimes the symbol set is designed so as represent signs from a formal sign system, to make it easier for the child to use both signing and a symbol system. Interaction strategies. The strategies children learn as typical speakers e for example for starting conversations, changing topics, and repairing misunderstandings, have to be formalized for children who use AAC. Using an AAC system changes conversational dynamics. The development of good skills in this aspect of communication will help children and young people who use AAC to interact successfully with a range of communication partners. In addition to these four components, it is helpful to add the role of the communication partner. Whatever AAC system is being used, communication via AAC is slower than typical communication. Strategies for the communication partner to support the child using AAC are described below.
major structural anomalies e such as those associated with Apert’s and other craniofacial syndromes e may also use AAC to support speech, especially with unfamiliar communication partners. Some children may have a less permanent need for AAC if they present with structural inadequacy (e.g. unrepaired cleft palate) or post-surgery have a temporary inability to express themselves through speech (e.g. temporary tracheotomy). Receptive language group: this group would include children who present with significant language delay or disorder, potentially in addition to inadequate motor speech skills. The children in this group can benefit from AAC in two ways. The symbolic representation of language can actually support their learning of language, and the use of their AAC system increases their communicative effectiveness by increasing their intelligibility. This group typically includes children who present with language disorder (specific language impairment, SLI). These children are unlikely to present with any other significant medical condition, but show major difficulties in acquiring speech and/or language despite appropriate input and adequate hearing. This context would also describe children who present with moderate to severe learning difficulties and whose difficulties in acquiring language reflect their more global impairments. These children may have a range of associated medical conditions, including hearing and visual impairments. Social interaction group: This group would most often describe children who present with social communication difficulties, and as such includes children who have a diagnosis of autistic spectrum disorder. In this context an AAC system, such as Picture Exchange Communication System (PECS), can provide the child with a means of learning to act and communicate effectively within their environment through learning the transactional nature of communication. Any individual child may fall in to one, two or three of these categories. In discussing AAC, there is often confusion between the terms verbal, non-verbal, vocal, and non-vocal. Table 1 demonstrates how modes of communication and representational systems may be described according to these dimensions.
Prevalence Because this form of intervention is of use to children with many differing conditions or impairments, and because access to AAC is determined at least in part by service availability, it could be argued that prevalence data are less than meaningful. For the purposes of this review, however, it seems helpful to provide some indication of the extent of AAC use where data are available. The prevalence of cerebral palsy in Western countries (countries of the North) is between 2 and 2.5 per thousand, 60% of whom are likely to have severe communication problems. To this, we can add some children with severe learning difficulties, specific language impairment and autism who may also benefit from AAC, in addition to a small number of children with rare syndromes which have implications for speech or language (e.g. Apert’s syndrome, leucodystrophy, Friedreich’s ataxia). This would suggest prevalence in line with the figures from NHS screening which suggest that at least two children per thousand experience severe long-term speech, language or communication difficulties (excluding hearing). In less developed countries (countries of the South) very similar prevalence data for cerebral palsy are reported. Knowledge about and access to AAC services, however, are likely to be far lower, even in countries such as India where well-developed provision exists in major cities. Thus the prevalence of AAC use is likely to be considerably lower.
Management considerations There are two broad considerations relevant to this discussion. Is the use of AAC to be temporary or long term? Is the language available on the AAC system for general communication across many contexts or set up for use in a specific context? Here are some case examples. Child A is a pre-literate child experiencing a planned hospital admission for surgery that will result in 2e3 days’ intubation. During this time natural speech will not be possible, but the child will be able to point to items on a page. The child’s potential anxiety can be partially relieved by the availability of a simple, low-tech communication board or book containing symbols/ pictures (in the example shown in the box 1 below the words would be substituted with the relevant symbol/pictures) by means of which the child may be supported to communicate. If the system is personalized before the child is hospitalized, as in
A framework for describing the needs of children who may use AAC It is useful to contextualize communication according to the children’s reasons for, or need to use, some form of AAC. This may be described in the following ways. Expressive language group: this group would describe children who generally have intact language skills but have inadequate motor speech that renders their communication attempts unintelligible to all but the most familiar communication partners. The largest proportion of children in this group would present with cerebral palsy, and from a speech and language perspective would have dysarthria or anarthria; other members of this group may present with severe verbal dyspraxia; and less often, expressive aphasia. Children with
PAEDIATRICS AND CHILD HEALTH 19:10
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Ó 2009 Elsevier Ltd. All rights reserved.
SYMPOSIUM: SPECIAL NEEDS
Describing communication according to the dimensions verbal/non-verbal and vocal/non-vocal
Vocal
Verbal
Non-verbal
Natural speech Voice Output Communication Aid (VOCA) þ language system, e.g. Liberator, Dynavox, The Grid, Discovery
Laughing Crying Vocalization for gaining attention
Yes
OK
When?
Food
Nurse
Now
Figure 1 An E-Tran frame (clear Perspex with a hole in the centre for the communication partners to look through and read the eye-pointing messages). Symbols or words may be placed on the frame.
use of typical language structures and vocabulary within a typical conversation. The child’s VOCA is mounted on their wheelchair and they access the symbol keyboard using their right knuckle; their left hand is not mobile enough to act as a substitute. What can be done to ensure continued independent communication whilst in hospital? The child mustn’t be rendered ‘speechless’ by a drip placed in their right hand/arm e the left should be used. Can the child’s VOCA be positioned/placed on their bedside tray in such a way that they can continue to use it whilst in bed? If not, what are the other options? Can a temporary mounting system be attached to their bed? What are the health and safety implications of this? If VOCA use has to be restricted, what temporary low-tech communication system has been created to enable the child to access basic communication strategies? Continuing with Child C: a follow-up visit to a community clinic is necessary. How can the consultation be constructed to give the child an opportunity to participate? The following paragraphs highlight the communication demands on the child and strategies the partner can use to facilitate effective communication.
Table 1
the example below (Box 1) it can support communication about things other than hospital routines. Child B is a child with a significant disability who has an emergency hospital admission. This child requires a percutaneous endoscopic gastrostomy (PEG). Child B already has a hightech AAC system that he accesses using a single head switch. The child’s switch and AAC system are both mounted on his electric wheelchair. It is more difficult, if not impossible, for the child to easily access his communication system whilst in bed or in any other seating. What are the alternatives for him? One easy solution is an EyeTransfer (E-Tran) frame with symbols or words organized on it (see Figure 1). This Perspex frame will require the support of the conversational partner to hold it in such a position that Child B can look at it and look at the relevant symbol to convey his message to the partner. Equally the partner needs to be in a position to see which symbol the child is staring at. This technique can be effectively used even when the child is lying immobile in bed. Child C experiences a planned hospital admission. The child uses a high-tech VOCA with a complex language system enabling
Where? Mummy
I have
Pain
Story
Joke
When?
Daddy
I want
Drink
Toilet
Game
Who?
Sister/ brother
I like
Toast
Juice
Michael
What?
Friend
I don’t like Broccoli
Lights
Dogs
Learning to use an AAC system A useful analogy is to consider how many years it may take to learn a second language or a musical instrument; becoming an aided communicator may take just as many years of practice, dedication and encouragement. Consider if you will the challenges facing children who use complex AAC: (1) their communication exchange is slower than typical; (2) they are perceived as having deficits in communication more often than strengths; (3) they have to know and understand the spoken language/s of their community; (4) they have to learn how that spoken language is symbolized on their AAC system; (5) they have to learn where that symbol is stored on their AAC system; (6) they have to cope with real-time conversation at the same time as thinking of their reply, identifying whether they have the vocabulary on their system to construct a reply, and then needing to locate it and access it. In such circumstances the communication
NO
Box 1
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Family
Facial expression Gesture
PECS, Picture Exchange Communication System.
YES
Pain
What?
Where? Non-vocal Writing Makaton vocabulary Sign-Along British Sign language Low-tech complex symbol communication system (e.g. Blissymbolics) PECS
No
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Ó 2009 Elsevier Ltd. All rights reserved.
SYMPOSIUM: SPECIAL NEEDS
partner’s ability to modify their communication strategies is crucial. A good communication partner is likely to have interesting and successful conversation with a child using an AAC system, a poor communication partner is likely to identify the child’s communication deficits!
expect that their communication systems will need to change in order to promote communication potential. An understanding of the range of devices, their access systems and types of language software available enables us to identify the component skills required by the user. This process is heavily dependent upon multidisciplinary working. Consider some of the areas of development that have to be considered when identifying a system. Visual perception and visual scanning skills: this impacts on decisions about the size, colour and position of the symbols. Posture control and manual dexterity: consideration of these issues informs decisions about the placement options of the VOCA (e.g. directly in front of the child, positioned to one side of the child) and on the opportunity for direct access or switch access to the system. Attention and memory: can the child attend to their speaking partner and simultaneously construct their own communication in relation to that, or are they at a level where they can only construct messages without much awareness of the partner’s needs or knowledge? Can they remember and recall how to sequence symbols to produce a word or phrase? Language comprehension and symbolic development: is the child’s comprehension at a level appropriate for their developmental age? Do they need comprehension support? Can they assign meaning to abstract symbolic representations of language? Possibly most important of all: are they MOTIVATED to communicate? For any child with repeated experiences of not being understood or given time to communicate to the best of their ability, there is a risk that they will become passive in communication exchanges. Typically, this is evidenced by the child rarely initiating communication and primarily being put in the role of responder to yes/no questions. It may sometimes be referred to as learned helplessness. Another fundamental consideration during the introduction and development of AAC is the parents readiness for an atypical means of communication. A temporary loss of natural speech is perhaps more readily accepted; however, the majority of children who use AAC will do so long term. This is asking parents to cope with the loss of natural speech as their child’s main means of communication and to accept the alternatives. This is a sensitive process that requires time and support, especially as very young children may have parents as their main communication partners. Given the complex issues to be carefully navigated during the child’s aided communication development, the multidisciplinary team should include parents, speech and language therapists, occupational therapists, physiotherapists, educational and or clinical psychologists, teachers and early-years staff, paediatrician and GP. Different members of this team have differing roles to play, but there must be an agreed understanding of the long-term aims for the child if their communication potential is to be achieved. A
Some strategies to support aided conversation Establish an understanding of the child’s verbal or non-verbal productions of YES/NO (this allows you to check agreed understanding of the child’s communication attempts). Time: give the child time to think about and find their answer to your questions. Ask open questions and wait for the response: e.g. what have you done this morning? You may have to help scaffold an agreed understanding, e.g. Child replies: ‘house’ Adult: you have phoned home Child: ‘no’ (give child time) ‘play’ Adult: have you been playing in the playroom? Child: ‘yes’ ‘house’ Adult: you’ve been playing in the house Child: ‘yes’ Don’t second guess the reply: e.g. when using high-tech devices don’t look over their shoulder as they create their response, or read it out and complete their utterance before they have. This could imply impatience on your part and may result in the child not trying to communicate.
How are AAC systems matched to the child? The overarching approach typically applies a Participation Model of assessment. This requires a description of the child now, considering their prognosis and the available AAC technology. If the system is to support the development of the child’s communication potential, it is important to retain a view of communication needs for today as well as for tomorrow. Key issues are explored here in brief. Identify the child’s patterns of community participation and their communication needs in those contexts (e.g. school, home, community centre, Scouts, etc.), and consider the types of communication children use and the language structures they need. Identify barriers to communication opportunities e usually issues of policy, practice, attitude, knowledge and skill (e.g. not given time to communicate, communication system kept safe ‘indoors’). Plan and implement interventions to support change (e.g. workshop to increase knowledge and skill, environmental adaptations, etc.). Evaluate intervention effectiveness (e.g. is the child using AAC participating more effectively in some or all of their communities?). This is a cyclical process over many years, the aim being to support the child to their maximum potential in becoming an independent communicator within their community. Crucial to this is the child/AAC system match. Currently there are many types of AAC system available, and it can be challenging to identify the most appropriate system for the child for today that will still be relevant tomorrow. As the child develops and changes we would
PAEDIATRICS AND CHILD HEALTH 19:10
FURTHER READING Alant E, Lloyd LL. Augmentative and alternative communication and severe disabilities: beyond poverty. London: Whurr, 2005. ATfC Task Force. Evidence of need and research into good practice in the delivery of assistive technology for communication services. From
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SYMPOSIUM: SPECIAL NEEDS
http://www.fastuk.org/pagedocuments/File/fast_documents/meetings/ Evidence%20base%20in%20ATfC.doc (accessed 01 Feb 2009). Beukelman D, Mirenda P. Augmentative and alternative communication: supporting children and adults with complex communication needs. 3rd edn. Baltimore: Paul H. Brookes, 2006. Blair E, Watson L. Epidemiology of cerebral palsy. Semin Fetal Neonatal Med 2006; 11: 117e25. Cockerill H, Carroll-Few L, eds. Communicating without speech: practical augmentative and alternative communication. London: MacKeith Press, 2001. Goldbart J, Marshall J. Pushes and pulls on the parents of children using AAC. Augment Altern Commun 2004; 20: 194e208. Millar S, Scott J. What is augmentative and alternative communication? An introduction. Edinburgh: CALL Centre, 1998. Also available at: http:// www.acipscotland.org.uk/Millar-Scott.pdf (accessed 01 Feb 2009). Murray J, Goldbart J. Cognitive and language acquisition in typical and aided language learning: a review of recent evidence from an aided communication perspective. Child Lang Teach Ther 2009; 25: 7e34. Pennington L, Marshall J, Goldbart J. Describing participants in AAC research and their communicative environments: guidelines for research and practice. Disabil Rehabil 2007; 29: 521e35. Schlosser R. The efficacy of augmentative and alternative communication. London: Academic Press, 2003.
PAEDIATRICS AND CHILD HEALTH 19:10
von Tetzchner S, Martinsen H. Introduction to augmentative and alternative communication. London: Whurr, 2000.
Practice points C
C
C
C
C
C
468
AAC may be appropriate for a diverse range of children, including those with complex structural and motor impairments, significant learning difficulties, social communication difficulties, and progressive neurological conditions Any child who does not appear to have a readily understood means of communication should be referred for an AAC assessment e don’t wait and see Successful aided communication development is a lengthy process involving a multidisciplinary team Parents will often be able to scaffold your interaction with the child using their AAC system Aided communication can be no-tech, low-tech, light-tech or high-tech; most people will use a combination of these When planning hospital admission, give consideration to the development of temporary aided communication systems to alleviate the stresses and anxieties of a potentially unfamiliar and frightening environment
Ó 2009 Elsevier Ltd. All rights reserved.
Augmentative and alternative communication: a review of current issues
methods of speech and/or writing where these are impaired or insufficient to meet the individual’s needs. AAC may also have a role where the child is having difficulty learning speech and language. In this and other cases, children may use AAC in the short to medium term or as their life-long means of communication. Whilst AAC is usually thought of as an ‘output’ system, a means for someone to express themselves, AAC can also be used to support the person’s understanding of language and communication. AAC is equally appropriate for children and adults, but in this review we will focus on children and young people for whom natural speech is unlikely to be their primary means of communicating. We will describe the major client groups below. There are many different types of AAC, including: eye-pointing, natural gesture, and use of manual signs, all of which are regarded as ‘no-tech’ or unaided systems photographs, symbols, and word boards, which are considered to be aided but ‘low-tech’ systems speech output devices, which include ‘light-tech’ simple battery-operated, single-message devices speech output devices which also include ‘high-tech’ aided systems; these are typically highly complex and flexible computer-based pieces of equipment known as voice-output communication aids in the UK and speech-generating devices in North America. Sign languages, in the sense of the natural languages of deaf people (e.g. BSL, ASL), are a specific aspect of AAC, often dealt with separately in the literature and in practice. Some children, however, may use signs taken from for example BSL within their AAC system.
Janice Murray Juliet Goldbart
Abstract Augmentative and alternative communication (AAC) includes a range of approaches aimed at supporting or replacing speech for children and others for whom natural speech is not sufficient to meet their needs. For some children it also offers a support to the process of language learning. A wide range of medical conditions may lead to a child requiring AAC, either temporarily or on a more permanent basis. AAC systems may be unaided or aided, in the sense of requiring some form of equipment. They vary on the level of technology required from none to specialized computer-based devices offering synthesized speech output. Management of children requiring AAC must involve parents and a multidisciplinary team of health and education professionals, in addition to active involvement on the part of the child.
Keywords AAC; augmentative and alternative communication; communication aid; dysarthria; language; non-verbal; non-vocal
Aims AAC systems
In this review we will: define augmentative and alternative communication (AAC) outline the forms AAC may take and provide a taxonomy of types of AAC provide some prevalence data on AAC use describe the children who are likely to benefit from use of AAC consider the implications e both advantages and disadvantages e of learning language through atypical means provide guidelines for engagement with children who use AAC in health settings provide suggestions for further reading. We will not consider the use of sign languages by deaf people or the deaf community.
There is more to AAC than the right piece of equipment, especially when the person using it has significant physical impairment or learning difficulties. Consequently, it is more useful to think of AAC systems as comprising four interconnected components. The mode. This covers, in gross terms, the components (no-, low-, light- and high-tech) described above, the method by which the message is being sent to the communication partner. As we have described, this could be anything from the direction of the child’s gaze to the words generated from a computer-based speech output device. The means by which the child accesses the communication mode. Direct access involves pointing, or pressing the keys on a keyboard. Children with very severe physical involvement, however, may not be able to access the communication mode directly. In this case they will need to be taught to use an indirect approach: for example, using a scanning system involving one or two switches. The representational system. In typical conversation we use spoken words to represent the meanings we want to convey. In AAC many different types of symbol set may be used; written words or letters, photographs, line drawings, or a formalized set of symbols such as Blissymbols or Picture Communication Symbols. The use of symbols which appear less abstract in relation to the words or ideas they represent is often seen as a facilitating the child’s acquisition of language.
What is AAC? AAC includes any method of communicating that supplements (augments) or replaces (provides an alternative to) the usual
Janice Murray BSc PhD is Principal Lecturer in Speech Pathology at the Faculty of Health, Psychology & Social Care, Manchester Metropolitan University, Manchester, UK. Juliet Goldbart BSc PhD is a Professor of Developmental Disabilities at the Faculty of Health, Psychology & Social Care, Manchester Metropolitan University, Manchester, UK.
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Ó 2009 Elsevier Ltd. All rights reserved.
SYMPOSIUM: SPECIAL NEEDS
Sometimes the symbol set is designed so as represent signs from a formal sign system, to make it easier for the child to use both signing and a symbol system. Interaction strategies. The strategies children learn as typical speakers e for example for starting conversations, changing topics, and repairing misunderstandings, have to be formalized for children who use AAC. Using an AAC system changes conversational dynamics. The development of good skills in this aspect of communication will help children and young people who use AAC to interact successfully with a range of communication partners. In addition to these four components, it is helpful to add the role of the communication partner. Whatever AAC system is being used, communication via AAC is slower than typical communication. Strategies for the communication partner to support the child using AAC are described below.
major structural anomalies e such as those associated with Apert’s and other craniofacial syndromes e may also use AAC to support speech, especially with unfamiliar communication partners. Some children may have a less permanent need for AAC if they present with structural inadequacy (e.g. unrepaired cleft palate) or post-surgery have a temporary inability to express themselves through speech (e.g. temporary tracheotomy). Receptive language group: this group would include children who present with significant language delay or disorder, potentially in addition to inadequate motor speech skills. The children in this group can benefit from AAC in two ways. The symbolic representation of language can actually support their learning of language, and the use of their AAC system increases their communicative effectiveness by increasing their intelligibility. This group typically includes children who present with language disorder (specific language impairment, SLI). These children are unlikely to present with any other significant medical condition, but show major difficulties in acquiring speech and/or language despite appropriate input and adequate hearing. This context would also describe children who present with moderate to severe learning difficulties and whose difficulties in acquiring language reflect their more global impairments. These children may have a range of associated medical conditions, including hearing and visual impairments. Social interaction group: This group would most often describe children who present with social communication difficulties, and as such includes children who have a diagnosis of autistic spectrum disorder. In this context an AAC system, such as Picture Exchange Communication System (PECS), can provide the child with a means of learning to act and communicate effectively within their environment through learning the transactional nature of communication. Any individual child may fall in to one, two or three of these categories. In discussing AAC, there is often confusion between the terms verbal, non-verbal, vocal, and non-vocal. Table 1 demonstrates how modes of communication and representational systems may be described according to these dimensions.
Prevalence Because this form of intervention is of use to children with many differing conditions or impairments, and because access to AAC is determined at least in part by service availability, it could be argued that prevalence data are less than meaningful. For the purposes of this review, however, it seems helpful to provide some indication of the extent of AAC use where data are available. The prevalence of cerebral palsy in Western countries (countries of the North) is between 2 and 2.5 per thousand, 60% of whom are likely to have severe communication problems. To this, we can add some children with severe learning difficulties, specific language impairment and autism who may also benefit from AAC, in addition to a small number of children with rare syndromes which have implications for speech or language (e.g. Apert’s syndrome, leucodystrophy, Friedreich’s ataxia). This would suggest prevalence in line with the figures from NHS screening which suggest that at least two children per thousand experience severe long-term speech, language or communication difficulties (excluding hearing). In less developed countries (countries of the South) very similar prevalence data for cerebral palsy are reported. Knowledge about and access to AAC services, however, are likely to be far lower, even in countries such as India where well-developed provision exists in major cities. Thus the prevalence of AAC use is likely to be considerably lower.
Management considerations There are two broad considerations relevant to this discussion. Is the use of AAC to be temporary or long term? Is the language available on the AAC system for general communication across many contexts or set up for use in a specific context? Here are some case examples. Child A is a pre-literate child experiencing a planned hospital admission for surgery that will result in 2e3 days’ intubation. During this time natural speech will not be possible, but the child will be able to point to items on a page. The child’s potential anxiety can be partially relieved by the availability of a simple, low-tech communication board or book containing symbols/ pictures (in the example shown in the box 1 below the words would be substituted with the relevant symbol/pictures) by means of which the child may be supported to communicate. If the system is personalized before the child is hospitalized, as in
A framework for describing the needs of children who may use AAC It is useful to contextualize communication according to the children’s reasons for, or need to use, some form of AAC. This may be described in the following ways. Expressive language group: this group would describe children who generally have intact language skills but have inadequate motor speech that renders their communication attempts unintelligible to all but the most familiar communication partners. The largest proportion of children in this group would present with cerebral palsy, and from a speech and language perspective would have dysarthria or anarthria; other members of this group may present with severe verbal dyspraxia; and less often, expressive aphasia. Children with
PAEDIATRICS AND CHILD HEALTH 19:10
465
Ó 2009 Elsevier Ltd. All rights reserved.
SYMPOSIUM: SPECIAL NEEDS
Describing communication according to the dimensions verbal/non-verbal and vocal/non-vocal
Vocal
Verbal
Non-verbal
Natural speech Voice Output Communication Aid (VOCA) þ language system, e.g. Liberator, Dynavox, The Grid, Discovery
Laughing Crying Vocalization for gaining attention
Yes
OK
When?
Food
Nurse
Now
Figure 1 An E-Tran frame (clear Perspex with a hole in the centre for the communication partners to look through and read the eye-pointing messages). Symbols or words may be placed on the frame.
use of typical language structures and vocabulary within a typical conversation. The child’s VOCA is mounted on their wheelchair and they access the symbol keyboard using their right knuckle; their left hand is not mobile enough to act as a substitute. What can be done to ensure continued independent communication whilst in hospital? The child mustn’t be rendered ‘speechless’ by a drip placed in their right hand/arm e the left should be used. Can the child’s VOCA be positioned/placed on their bedside tray in such a way that they can continue to use it whilst in bed? If not, what are the other options? Can a temporary mounting system be attached to their bed? What are the health and safety implications of this? If VOCA use has to be restricted, what temporary low-tech communication system has been created to enable the child to access basic communication strategies? Continuing with Child C: a follow-up visit to a community clinic is necessary. How can the consultation be constructed to give the child an opportunity to participate? The following paragraphs highlight the communication demands on the child and strategies the partner can use to facilitate effective communication.
Table 1
the example below (Box 1) it can support communication about things other than hospital routines. Child B is a child with a significant disability who has an emergency hospital admission. This child requires a percutaneous endoscopic gastrostomy (PEG). Child B already has a hightech AAC system that he accesses using a single head switch. The child’s switch and AAC system are both mounted on his electric wheelchair. It is more difficult, if not impossible, for the child to easily access his communication system whilst in bed or in any other seating. What are the alternatives for him? One easy solution is an EyeTransfer (E-Tran) frame with symbols or words organized on it (see Figure 1). This Perspex frame will require the support of the conversational partner to hold it in such a position that Child B can look at it and look at the relevant symbol to convey his message to the partner. Equally the partner needs to be in a position to see which symbol the child is staring at. This technique can be effectively used even when the child is lying immobile in bed. Child C experiences a planned hospital admission. The child uses a high-tech VOCA with a complex language system enabling
Where? Mummy
I have
Pain
Story
Joke
When?
Daddy
I want
Drink
Toilet
Game
Who?
Sister/ brother
I like
Toast
Juice
Michael
What?
Friend
I don’t like Broccoli
Lights
Dogs
Learning to use an AAC system A useful analogy is to consider how many years it may take to learn a second language or a musical instrument; becoming an aided communicator may take just as many years of practice, dedication and encouragement. Consider if you will the challenges facing children who use complex AAC: (1) their communication exchange is slower than typical; (2) they are perceived as having deficits in communication more often than strengths; (3) they have to know and understand the spoken language/s of their community; (4) they have to learn how that spoken language is symbolized on their AAC system; (5) they have to learn where that symbol is stored on their AAC system; (6) they have to cope with real-time conversation at the same time as thinking of their reply, identifying whether they have the vocabulary on their system to construct a reply, and then needing to locate it and access it. In such circumstances the communication
NO
Box 1
PAEDIATRICS AND CHILD HEALTH 19:10
Family
Facial expression Gesture
PECS, Picture Exchange Communication System.
YES
Pain
What?
Where? Non-vocal Writing Makaton vocabulary Sign-Along British Sign language Low-tech complex symbol communication system (e.g. Blissymbolics) PECS
No
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SYMPOSIUM: SPECIAL NEEDS
partner’s ability to modify their communication strategies is crucial. A good communication partner is likely to have interesting and successful conversation with a child using an AAC system, a poor communication partner is likely to identify the child’s communication deficits!
expect that their communication systems will need to change in order to promote communication potential. An understanding of the range of devices, their access systems and types of language software available enables us to identify the component skills required by the user. This process is heavily dependent upon multidisciplinary working. Consider some of the areas of development that have to be considered when identifying a system. Visual perception and visual scanning skills: this impacts on decisions about the size, colour and position of the symbols. Posture control and manual dexterity: consideration of these issues informs decisions about the placement options of the VOCA (e.g. directly in front of the child, positioned to one side of the child) and on the opportunity for direct access or switch access to the system. Attention and memory: can the child attend to their speaking partner and simultaneously construct their own communication in relation to that, or are they at a level where they can only construct messages without much awareness of the partner’s needs or knowledge? Can they remember and recall how to sequence symbols to produce a word or phrase? Language comprehension and symbolic development: is the child’s comprehension at a level appropriate for their developmental age? Do they need comprehension support? Can they assign meaning to abstract symbolic representations of language? Possibly most important of all: are they MOTIVATED to communicate? For any child with repeated experiences of not being understood or given time to communicate to the best of their ability, there is a risk that they will become passive in communication exchanges. Typically, this is evidenced by the child rarely initiating communication and primarily being put in the role of responder to yes/no questions. It may sometimes be referred to as learned helplessness. Another fundamental consideration during the introduction and development of AAC is the parents readiness for an atypical means of communication. A temporary loss of natural speech is perhaps more readily accepted; however, the majority of children who use AAC will do so long term. This is asking parents to cope with the loss of natural speech as their child’s main means of communication and to accept the alternatives. This is a sensitive process that requires time and support, especially as very young children may have parents as their main communication partners. Given the complex issues to be carefully navigated during the child’s aided communication development, the multidisciplinary team should include parents, speech and language therapists, occupational therapists, physiotherapists, educational and or clinical psychologists, teachers and early-years staff, paediatrician and GP. Different members of this team have differing roles to play, but there must be an agreed understanding of the long-term aims for the child if their communication potential is to be achieved. A
Some strategies to support aided conversation Establish an understanding of the child’s verbal or non-verbal productions of YES/NO (this allows you to check agreed understanding of the child’s communication attempts). Time: give the child time to think about and find their answer to your questions. Ask open questions and wait for the response: e.g. what have you done this morning? You may have to help scaffold an agreed understanding, e.g. Child replies: ‘house’ Adult: you have phoned home Child: ‘no’ (give child time) ‘play’ Adult: have you been playing in the playroom? Child: ‘yes’ ‘house’ Adult: you’ve been playing in the house Child: ‘yes’ Don’t second guess the reply: e.g. when using high-tech devices don’t look over their shoulder as they create their response, or read it out and complete their utterance before they have. This could imply impatience on your part and may result in the child not trying to communicate.
How are AAC systems matched to the child? The overarching approach typically applies a Participation Model of assessment. This requires a description of the child now, considering their prognosis and the available AAC technology. If the system is to support the development of the child’s communication potential, it is important to retain a view of communication needs for today as well as for tomorrow. Key issues are explored here in brief. Identify the child’s patterns of community participation and their communication needs in those contexts (e.g. school, home, community centre, Scouts, etc.), and consider the types of communication children use and the language structures they need. Identify barriers to communication opportunities e usually issues of policy, practice, attitude, knowledge and skill (e.g. not given time to communicate, communication system kept safe ‘indoors’). Plan and implement interventions to support change (e.g. workshop to increase knowledge and skill, environmental adaptations, etc.). Evaluate intervention effectiveness (e.g. is the child using AAC participating more effectively in some or all of their communities?). This is a cyclical process over many years, the aim being to support the child to their maximum potential in becoming an independent communicator within their community. Crucial to this is the child/AAC system match. Currently there are many types of AAC system available, and it can be challenging to identify the most appropriate system for the child for today that will still be relevant tomorrow. As the child develops and changes we would
PAEDIATRICS AND CHILD HEALTH 19:10
FURTHER READING Alant E, Lloyd LL. Augmentative and alternative communication and severe disabilities: beyond poverty. London: Whurr, 2005. ATfC Task Force. Evidence of need and research into good practice in the delivery of assistive technology for communication services. From
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SYMPOSIUM: SPECIAL NEEDS
http://www.fastuk.org/pagedocuments/File/fast_documents/meetings/ Evidence%20base%20in%20ATfC.doc (accessed 01 Feb 2009). Beukelman D, Mirenda P. Augmentative and alternative communication: supporting children and adults with complex communication needs. 3rd edn. Baltimore: Paul H. Brookes, 2006. Blair E, Watson L. Epidemiology of cerebral palsy. Semin Fetal Neonatal Med 2006; 11: 117e25. Cockerill H, Carroll-Few L, eds. Communicating without speech: practical augmentative and alternative communication. London: MacKeith Press, 2001. Goldbart J, Marshall J. Pushes and pulls on the parents of children using AAC. Augment Altern Commun 2004; 20: 194e208. Millar S, Scott J. What is augmentative and alternative communication? An introduction. Edinburgh: CALL Centre, 1998. Also available at: http:// www.acipscotland.org.uk/Millar-Scott.pdf (accessed 01 Feb 2009). Murray J, Goldbart J. Cognitive and language acquisition in typical and aided language learning: a review of recent evidence from an aided communication perspective. Child Lang Teach Ther 2009; 25: 7e34. Pennington L, Marshall J, Goldbart J. Describing participants in AAC research and their communicative environments: guidelines for research and practice. Disabil Rehabil 2007; 29: 521e35. Schlosser R. The efficacy of augmentative and alternative communication. London: Academic Press, 2003.
PAEDIATRICS AND CHILD HEALTH 19:10
von Tetzchner S, Martinsen H. Introduction to augmentative and alternative communication. London: Whurr, 2000.
Practice points C
C
C
C
C
C
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AAC may be appropriate for a diverse range of children, including those with complex structural and motor impairments, significant learning difficulties, social communication difficulties, and progressive neurological conditions Any child who does not appear to have a readily understood means of communication should be referred for an AAC assessment e don’t wait and see Successful aided communication development is a lengthy process involving a multidisciplinary team Parents will often be able to scaffold your interaction with the child using their AAC system Aided communication can be no-tech, low-tech, light-tech or high-tech; most people will use a combination of these When planning hospital admission, give consideration to the development of temporary aided communication systems to alleviate the stresses and anxieties of a potentially unfamiliar and frightening environment
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