**2. Communication problems and communication rights in clinical settings**

#### **2.1. Communication in children with Autism Spectrum Disorders (ASD)**

Major advances have been made over the two past decades in understanding the socialcommunication difficulties of children with ASD, resulting in greater emphasis on early socialcommunication features in the diagnostic criteria. Most parents of children with autism first begin to be concerned that something is not quite right in their child's development because of early delays or regressions in the development of speech [3]. Problems with communication, in terms of both understanding and expression, are often said to be one of the main causes of

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the severe behaviour problems that are common among persons with severe autism and mental retardation [4].

Although all persons diagnosed with autism have problems with communication, their type and degree vary a lot and the work of identifying different subgroups has just begun. It has been estimated that between one-third [5] and one-half [6] of children and adults with autism have no speech. However, more recent research results indicate that the proportion of nonspeaking children with ASD is much smaller, approximately 14% to 20%, among those who received very early intervention [7]. In spite of the heterogeneity of language abilities in children with ASD, social-communication or pragmatic impairments are universal across all ages and ability levels [8]. Certainly, communication and communication problems are at the heart of what ASD is all about

#### **2.2. Communication rights of persons with disability**

All individuals, with or without disabilities, have a basic human right to influence their own living conditions through communication. The United Nations' (UN's) convention on the rights of persons with disabilities, has the purpose to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabili‐ ties, and to promote respect for their inherent dignity. (DS 2008:23) [2]. The convention is built on eight general principles, for example: individual autonomy including the freedom to make one's own choices, full and effective participation and inclusion in society and accessibility, and respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities. Article 25 postulates that health profes‐ sionals are required to provide care of the same quality to persons with disabilities as to others and to take all appropriate measures to ensure access. According to article 21 this includes the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice, including augmentative and alternative communication. Furthermore, the idea of "Universal design" is put forth, meaning that the design of products, environments, programmes and services should be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design [2].

#### **2.3. Communication and communication problems in health care situations**

People with disability often have many health contacts. According to Mahon and Kibirige [9] children with disability more frequently are in need of health care and are cared for longer than children without disabilities. Due to the communication difficulties being part of the autism spectrum visits to health care or hospital stays can be very problematic. Children with ASD are particularly stressed due to lack of structure and predictability [10]. It is also difficult for the individual with a communicative disability to communicate with the staff and ask questions [10]. To a certain degree this is true also for other individuals, in particular those whose skills in the spoken and or written language that is used, are not enough, and also may lack knowledge of the culture of the health care system [11].

Children also may have difficulties in understanding and communicating during health care situations. The UN convention on the rights of the child states that all children should be equally treated and have the right to freedom of expression, including the right to seek, receive and impart information and idea in all forms [1]. Research has shown that this is not always the case in within health care. Coyne [12] has shown that children sometimes have the feeling of being excluded, not receiving information or being involved in decisions and often talked to in a language which is difficult to understand. The same study shows that children feel less worried, calmer and respected when they are provided with information and asked about the care [12]. According to [13] this also leads to an increased feeling of control which in turn leads to improved compliance and more effective care.

This means that far more people, than those with communicative disability, are in need of better support to access information and communication within the health care system. To develop routines, procedures and materials within health care, based on the idea of universal design, should benefit all groups both with and without communication problems. This would also save time and resources in the efforts of providing equal care to all [11].

#### **2.4. AAC to promote accessibility in health care situations**

the severe behaviour problems that are common among persons with severe autism and

Although all persons diagnosed with autism have problems with communication, their type and degree vary a lot and the work of identifying different subgroups has just begun. It has been estimated that between one-third [5] and one-half [6] of children and adults with autism have no speech. However, more recent research results indicate that the proportion of nonspeaking children with ASD is much smaller, approximately 14% to 20%, among those who received very early intervention [7]. In spite of the heterogeneity of language abilities in children with ASD, social-communication or pragmatic impairments are universal across all ages and ability levels [8]. Certainly, communication and communication problems are at the

All individuals, with or without disabilities, have a basic human right to influence their own living conditions through communication. The United Nations' (UN's) convention on the rights of persons with disabilities, has the purpose to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabili‐ ties, and to promote respect for their inherent dignity. (DS 2008:23) [2]. The convention is built on eight general principles, for example: individual autonomy including the freedom to make one's own choices, full and effective participation and inclusion in society and accessibility, and respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities. Article 25 postulates that health profes‐ sionals are required to provide care of the same quality to persons with disabilities as to others and to take all appropriate measures to ensure access. According to article 21 this includes the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice, including augmentative and alternative communication. Furthermore, the idea of "Universal design" is put forth, meaning that the design of products, environments, programmes and services should be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design [2].

**2.3. Communication and communication problems in health care situations**

lack knowledge of the culture of the health care system [11].

People with disability often have many health contacts. According to Mahon and Kibirige [9] children with disability more frequently are in need of health care and are cared for longer than children without disabilities. Due to the communication difficulties being part of the autism spectrum visits to health care or hospital stays can be very problematic. Children with ASD are particularly stressed due to lack of structure and predictability [10]. It is also difficult for the individual with a communicative disability to communicate with the staff and ask questions [10]. To a certain degree this is true also for other individuals, in particular those whose skills in the spoken and or written language that is used, are not enough, and also may

mental retardation [4].

292 Autism Spectrum Disorder - Recent Advances

heart of what ASD is all about

**2.2. Communication rights of persons with disability**

Augmentative and alternative communication (AAC) includes all forms of communication (other than oral speech) that are used to represent thoughts, needs, wants, and ideas. AAC can be used both as a support for comprehension and for production of spoken or written communication [14].

Project activities concerning use of AAC as a tool in hospital care seem to be going on in many countries. However, when it comes to research of the effects of these interventions, specifically regarding children, very little has been done. In a review of research regarding communication between nurses and patients with complex communication needs (CCN) undertaken by Finke, Light and Kitko [15], none of the twelve studies that were identified specifically concerned children. Another review that was found focused disabled children's experiences as inpatients [16]. The data, gathered from children, parents and staff in the eight qualitative studies that were reviewed, showed that communication was the overarching theme. Nurses reported that communication was difficult and that they did not have a consistent framework for involving the child in discussion and decision. The main conclusions comprised recommendations of giving the child information and appropriate involvement in discussion and decision-making and that the children's experiences with respect to this was not optimal. Despite the strong focus on communication in this review and the conclusions also pointing to the need of more training in communicative strategies, there is no mentioning or discussion of augmentative strategies or tools in this article. Beside these two reviews of communicative disability and hospital care, a pilot study published in 2013 report successful results using pictorial supports for children with autism in medical settings [17]. Two other studies report how AAC success‐ fully can be used more generally in paediatric care. The first study was published by Costello in 2000 and presents the Children's Hospital Boston model of pre-operative AAC-intervention. This intervention prepares the children and the families for the expected period of loss of speech due to tracheostomy, intubation and/or use of ventilators during the postoperative care at the Intensive Care Unit (ICU). The results of the evaluation were excellent in that almost all patients used the communication aids they had chosen and loss of speech was not seen as the major problem, in contrary to most evaluations of ICU care [18]. In the second study a picture board was provided as a means to answer questions of pain after surgery. The children's answers were more precise using AAC and the parents were very positive [19].

In spite of these positive reports more efforts are needed. This was evident in a study by Thunberg, Buchholz and Nilsson [20], where parents of children with communication difficulties were interviewed (among these also parents to children on the autism spectrum). The parents stated that hospitals should be better both in providing various forms of commu‐ nication materials and also in adapting these to different children and different situations.

In particular the parents stressed the importance of direct communication between the medical staff and the children, and that staff need more knowledge about communication and use of AAC to manage this. The staff need to communicate with the child on the child's own condition and should therefore receive training in the use of alternative and complementary means of communication and also how to interact with children with communication difficulties [20].

Unfortunately there is no research on how children with ASD or other types of communication problems perceive medical care. However, there are studies showing that adults with com‐ munication difficulties are experiencing a lack of communication competency in health care. Just as parents of children with communication disabilities, adults states that medical care staff need greater knowledge of and training in communication strategies and the use of alternative means of communication [21].

#### **2.5. KomHIT model — Communication support in paediatric and dental care**

The KomHIT model – communication in care settings using communicative support and IT – has the overall purpose to improve the communicative rights of children with communicative disabilities during pediatric or dental care situations according to the Convention on the rights of persons with disability using AAC as Universal Design (article 3, United Nations, 2006). KomHIT therefore tries to implement AAC, mainly in the form of visual supports, generally to all or most children. This is important in today's care which often is slimmed with respect to time and resources, making it a challenge to implement procedures and methods that are exceptions to the daily routines. The basic idea is that "what is good for people with disability is good for everyone". When AAC or visual support is used generally, communication, clarity and safety is improved for everyone. This is particularly important for the group of children with disabilities and their parents who have another language-and/or cultural background. The model has been developed within a joint project involving both professionals and user organizations.

KomHIT consists of both educational resources and easy available communicative tools/ materials. A web tool has been created where pictorial communication material can be made, stored and searched by both professionals and parents (www.bildstod.se). The symbols that are available have been developed within different EU projects and can all be used for free, as long as they are not used commercially. This pictorial web tool www.bildstod.se can be said to constitute the main resource. The other web-resource (www.kom-hit.se) also shares information about (1) communicative rights according to the UN conventions on the right of the child and on persons with disabilities (2) project work and methods (3) relevant research (4) a video bank of illustrative video clips and links to external video material (5) a bank of educational resources and information about webb-based and campus-based courses and educations.

The educational model involves both campus-and web-based courses. Two basic packages for education has been developed. One to educate KomHIT communication mentors, and the other one to be used by the communication mentors in their job to guide and educate their colleagues. The education of mentors includes knowledge about communication, communi‐ cative disability, the UN convention on the right of persons with disability and augmentative and alternative communication strategies. This is given through lectures, video examples, role plays and exercises using and designing pictorial material and the web-resource www.bild‐ stod.se. A choice of these resources are then provided to the mentor to pass on to their colleagues during meetings and/or educational activities within their clinics to implement the use of AAC/pictorial support. The majority of the educational resources are available on the KomHIT web site also to be accessed and used by other persons in need of communication support, specifically parents of children with communicative disabilities.

#### *2.5.1. KomHIT model — A pilot study within day surgery*

at the Intensive Care Unit (ICU). The results of the evaluation were excellent in that almost all patients used the communication aids they had chosen and loss of speech was not seen as the major problem, in contrary to most evaluations of ICU care [18]. In the second study a picture board was provided as a means to answer questions of pain after surgery. The children's

In spite of these positive reports more efforts are needed. This was evident in a study by Thunberg, Buchholz and Nilsson [20], where parents of children with communication difficulties were interviewed (among these also parents to children on the autism spectrum). The parents stated that hospitals should be better both in providing various forms of commu‐ nication materials and also in adapting these to different children and different situations.

In particular the parents stressed the importance of direct communication between the medical staff and the children, and that staff need more knowledge about communication and use of AAC to manage this. The staff need to communicate with the child on the child's own condition and should therefore receive training in the use of alternative and complementary means of communication and also how to interact with children with communication difficulties [20].

Unfortunately there is no research on how children with ASD or other types of communication problems perceive medical care. However, there are studies showing that adults with com‐ munication difficulties are experiencing a lack of communication competency in health care. Just as parents of children with communication disabilities, adults states that medical care staff need greater knowledge of and training in communication strategies and the use of alternative

The KomHIT model – communication in care settings using communicative support and IT – has the overall purpose to improve the communicative rights of children with communicative disabilities during pediatric or dental care situations according to the Convention on the rights of persons with disability using AAC as Universal Design (article 3, United Nations, 2006). KomHIT therefore tries to implement AAC, mainly in the form of visual supports, generally to all or most children. This is important in today's care which often is slimmed with respect to time and resources, making it a challenge to implement procedures and methods that are exceptions to the daily routines. The basic idea is that "what is good for people with disability is good for everyone". When AAC or visual support is used generally, communication, clarity and safety is improved for everyone. This is particularly important for the group of children with disabilities and their parents who have another language-and/or cultural background. The model has been developed within a joint project involving both professionals and user

KomHIT consists of both educational resources and easy available communicative tools/ materials. A web tool has been created where pictorial communication material can be made, stored and searched by both professionals and parents (www.bildstod.se). The symbols that are available have been developed within different EU projects and can all be used for free, as long as they are not used commercially. This pictorial web tool www.bildstod.se can be said

**2.5. KomHIT model — Communication support in paediatric and dental care**

means of communication [21].

294 Autism Spectrum Disorder - Recent Advances

organizations.

answers were more precise using AAC and the parents were very positive [19].

KomHIT was first pilot tested and evaluated on a day surgery ward at Queen Silvia Childrens' Hospital in Gothenburg, Sweden. All children/families were provided with (1) an invitation letter to the surgery ward with structured text and pictorial support, (2) a visual schedule with six pictures informing of the main events, (3) a communication board with 30 symbols to enable conversation on the topic of day surgery (figure 1). (4) A visual schedule book of 6 pages, depicting a vertical column of five photos/symbols each, showing the details of the procedures during the visit (figure 1). Information about the KomHIT project and the use of the materials was also attached to the invitation letter. The parents were instructed to point to the pictures while explaining and talking to the child about the hospital visit, and to bring the visual schedule along during the travel to the hospital. Upon arrival to the surgery ward the nurse used point talking to the pictures in the Schedule book explaining the procedures of the day. The child then could bring this book along during the day and remove the pictures one-byone after finishing the different steps. Each nurse also had access to the same "day surgery communication board" as was sent to the family (to the right above), to be able to expand point talking beyond the book, specifically for children with more comprehensive communication problems.

A pilot study of this intervention was conducted focusing on the expected decrease in stress and anxiety [22]. Twenty-five children with communicative disability (about half on the autism spectrum) and their parents participated (seven in the intervention group, 18 controls). Children and parents were asked about their emotional state using the State-Trait Anxiety Inventory (STAI), for children adapted to the Talking Mats format, and samples of saliva were collected. Premedication was also checked. Due to the few participants that could be recruited information and conversation.

communication problems.

about the hospital visit, and to bring the visual schedule along during the travel to the hospital. Upon arrival to the surgery ward the nurse used point talking to the pictures in the Schedule book explaining the procedures of the day. The child then could bring this book along during the day and remove the pictures one-by-one after finishing the different steps. Each nurse also had access to the same "day surgery communication board" as was sent to the family (to the right above), to be able to expand point talking beyond the book, specifically for children with more comprehensive

**Figure 1 Examples of tools used within day surgery.** To the left the visual schedule book of six pages depicting a vertical column of five photos on each side. The child removes the pictures one-byone after finishing the different steps. This book was used for all children 2-8 years old and for older

A pilot study of this intervention was conducted focusing on the expected decrease in stress and anxiety [22]. Twenty-five children with communicative disability (about half on the autism spectrum) and their parents participated (seven in the intervention group, 18 controls). Children and parents were asked about their emotional state using the State-Trait Anxiety Inventory (STAI), for children adapted to the Talking Mats format, and samples of saliva were collected. Premedication was also **Figure 1. Examples of tools used within day surgery.** To the left the visual schedule book of six pages depicting a vertical column of five photos on each side. The child removes the pictures one-by-one after finishing the different steps. This book was used for all children 2-8 years old and for older children with disability or language problems and/or being tense or anxious. The picture to the right shows a communication board that was used with children who needed more support during information and conversation.

during the intervention phase no statistical analyses could be done. The results were promising in that the morning cortisol levels were lower in the group of children who were provided with AAC and that none of these children were in need of premedication. No differences were seen in regard to the STAI results. It was discussed that this might be due to the adapted STAI being too rough a measure. In conclusion this pilot study indicated that the use of pictures can reduce anxiety in children with communicative disability during hospital care, but that more research is needed to prove this [22]. checked. Due to the few participants that could be recruited during the intervention phase no statistical analyses could be done. The results were promising in that the morning cortisol levels were lower in the group of children who were provided with AAC and that none of these children were in need of premedication. No differences were seen in regard to the STAI results. It was discussed that this might be due to the adapted STAI being too rough a measure. In conclusion this pilot study indicated that the use of pictures can reduce anxiety in children with communicative disability during hospital care, but that more research is needed to prove this [22]. The following parts of this chapter describes the implementation and evaluation of the KomHIT-

The following parts of this chapter describes the implementation and evaluation of the KomHIT-model in a Neuropsychiatric clinic, using AAC in the form of pictorial supports during assessment and intervention procedures. model in a Neuropsychiatric clinic, using AAC in the form of pictorial supports during assessment and intervention procedures.
