It can be difficult to appreciate the inability to communicate using speech. The ability to communicate is one of the most crucial requirements to participation within our individual environments and within society. It is the means by which we are educated, employed, understood and loved. “Complex communication needs” is a term used to describe the needs of those who have little or no speech. Individuals who have complex communication needs may experience more difficulties communicating than those without, particularly in the way of expressing feelings or thoughts to others, advocating for themselves and building friendships and socialising. Born with cerebral palsy and using augmentative communication as his key form of interaction, Chris Klein has been described as a “voice to those that have none”. With reference to Chris Klein’s video, this report will outline society’s viewpoint on individuals with complex communication needs, focussing on how people define the word “normal” and exploring what this means to people using augmentative or alternative communication tools. It will also discuss the struggle and constant feelings of frustration that can be felt from the inability to communicate with those around you, and the sense of empowerment and regained confidence that the tools of communication (and specifically Chris Klein’s AAC device) can, and has provided for the individual. It will also explore how the growth of augmentative and alternative communication (AAC) has had a positive impact in clinical practices for users, (with reference to Chris Klein) speech pathologists, and relevant members of the community. It will continue to discuss the role of the community and communication partners in supporting AAC and it’s relation to spoken communication and AAC eligibility and exclusion criteria.
Reflection on Society:
What defines something as normal? Klein opens his speech explaining two experiences that have occurred consistently throughout his life. These stories paint an accurate yet unsettling picture of society’s viewpoint, opinions and attitudes towards individuals with complex communication needs.
Societal attitudes and beliefs surrounding AAC users:
The first story depicted issues of how a curious child’s mother was too “embarrassed to ask [Klein] a question”. Anne Abbott (a current AAC user) has spoken out at York University with similar experiences (Everyone Communicates, 2009). Abbot tells of when she would be refused to be addressed by members of the public with questions such as “What do you think she wants?” even while she is using her communication board in an attempt to get their attention and answer their questions. Abbott says that people “who use Augmentative Alternative Communication, are frequently, and wrongly, silenced. [This is] because of a lack of patience and understanding, or perhaps a fear that they will look ridiculous if they cannot figure out what an AAC user is trying to say” (Abbot, 2009). An excerpt from AAC in the Community – A Personal Viewpoint, provides more evidence of these societal attitudes and beliefs: “From a little boy my first memory was one of frustration, frustration with not being understood – and, because I was not understood, being treated differently – treated as if I was not intelligent or worse again treated as if I was stupid” (McFadden, 1995). Awareness in the community would lead to further acceptance within the community due to public education. The societal belief that AAC users cannot understand their communication partners is one that Klein wants to change, and is a key responsibility of the speech pathologist to effect through education within society. Klein says “… people that use AAC are well educated, we want to talk to you, we want to build a relationship with you”. Educating the wider society regarding AAC users as well as how AAC devices work is paramount to the improvement of the quality of life for AAC users.
What is normal?
Klein says he is often viewed in society as a “strange being”; with his second story depicting a man telling Klein that he had a brother “who was not normal too”. Klein describes societies definition of normal as “something without a struggle”. He continues, saying that all human beings have struggles and disabilities, his is just more obvious than other peoples. Klein says he and his family always had to “fight” the system so he could be in the regular classroom. Throughout high school he tried to fit in by keeping up to date with the latest trends, yet Klein says his disability is “the only thing my peers saw”. Klein said it wasn’t until he ceased trying to mask his disability, and instead embracing it, that people began to see past his disability and to begin viewing him a person with “unique gifts”. The realisation that all individuals have personal difficulties and struggles (as Abbot says “AAC users are just like anybody else; we have the same feelings and thoughts and dreams”) (Abbot, 2009) is an important one in order to change societal opinions and beliefs on AAC users. Klein’s exasperating questioning of “Will there ever be a time I am seen as a normal person?” reflects the thoughts of many AAC users and it one that deserves to be transformed.
Reflection on Tools for Communication
Introduction: The Struggle with the Inability to Communicate
Klein reflects on the constant struggle and obstruction he had with his inability to communicate before he was more enabled and empowered through the use of his current AAC device. An excerpt from Beukelman and Mirenda’s Augmentative and alternative communication: Supporting children and adults with complex communication needs, gives an accurate representation of how it might feel to be unable to communicate: “Go to a party and don’t talk. Here is what you will find: people talking; talking behind, beside, around, over, under, through and even for you. But never with you. You are ignored …” (Beaukelman & Mirenda, 2005).
Communication Tools and their Ability (or Inability) to Meet Basic Communication Needs
Individuals with complex communication needs may not have the communication skills, or tools, to meet all of their personal needs. To an individual who does not have complex communication needs, these skills may be considered as basic human requirements (Complex communication needs, 2009). These needs may be at a basic level (such as bathroom, hunger, comfort), or regarding the ability to transfer information, use social etiquette or feel social closeness to those they communicate with. Growing up, Klein says he was “stuck because nobody could really understand [him]”, and felt trapped with those around him (as well as his doctor) questioning his mental capabilities. This improved through his use of a picture book while he was growing up. He says this tool “solved some frustration” but still was lacking that he “couldn’t communicate everything [he] wanted to say”.
Improving and Expanding on AAC devices: Enhancing Technology so AAC Users can Communicate their Emotions, Communicate Meaningful sentences, and Provide them with Independence and Freedom of Speech
Klein’s inability to express his feelings was a very specific and emotional issue. It is an issue that is independent of an individual’s developmental and communicative level, and the experience for their communicative partners is often challenging when having to rely on guessing to interpret the individual’s emotional state of mind. Klein questions “Do you not understand how frustrating it is when your parents or brothers or sisters can’t understand you?” He goes on to describe the personal difficulties he had with not being able to express his love for his mother. At age 6, Klein began using his first speech generating communication box, which was the beginning of his ability to speak at phrase level, and continued to improve to talking in complete sentences. A speech-generating device enables a person to put together his or her own personal messages. This provides them with more independence within their environments and the general society, by giving them freedom of speech (Types of Augmentative and Alternative Communication, 2003). Klein says, “This technology changed the course of my life … augmentative communication gives a person a chance to be educated, to build relationships, to have a meaningful life because it gives them a tool to communicate”.
Reflection on Clinical implications
Introduction: The recent growth of AAC, and the need to continue education and research
The field of AAC has experienced an explosion in technology over the past 10 years, which has had enormous impact on clinical practice for speech pathologists. The combined advances of rapid technological expansion alongside new research has brought with it new approaches to assessment and intervention, expanding knowledge within the practice of AAC and society, and the use of evidence based practice within clinical practice. This significant aspect of growth regarding education and knowledge on the topic of AAC can be evidenced through the fact that more than 285 published journal articles in the past decade include the term “augmentative and alternative communication”, four times the number (64) which had appeared 30 years prior (from 1965 to 1995) (Wilkinson and Hennig, 2007). McFadden writes that the development of communication aids “is really quite amazing how fast it has developed” (McFadden, 1995). While there has been significant growth, as an AAC user, Klein believes education and knowledge still needs to be more widespread, “We need to educate people on what augmentative communication is”.
The Role of the Community, and Communication Partners in Supporting AAC
The role of communication partners and communities is an area that has had longstanding repercussions within AAC, and education of an AAC device can help with the clinical implication of facing difficulties when communicating with an AAC user. Research has shown that families are the most important and effective trainers, and often act as co-therapists (Parette and Angelo, 1996). Difficulties with communication within the family may be an indication to directly involve these persons in intervention and thus help them understand the rudiments to effectively communicating with an AAC user (Wilkinson and Hennig, 2007). Clinicians need to provide both AAC users and their communication partners with interesting and relevant vocabulary, so as to support a broader range of communicative functions and to encourage improved social interaction with multiple conversational turns. As aforementioned, Klein felt his picture book did not allow him to communicate “everything [he] wanted to say”, and felt more freedom when he began using his speech-generating communication device which allowed his vocabulary to grow and thus to produce meaningful sentences. A second key responsibility of the conversational partner is to model the use of the AAC device. Ideally, clinicians will help communication partners to learn the skills of the AAC device alongside the AAC user and help the AAC user to successfully continue to converse via the communication aid.
AAC and its Relation to Spoken Communication and the Eligibility and Exclusion Criteria
There is a common misconception that AAC replaces spoken communication, and a clinical implication for service providers is the question that is often encountered: will AAC intervention impede the development of speech? However AAC communication and in particular, those with a voice output, have been shown to improve existing speech skills in children (Wilkinson and Hennig, 2007). Within this question is a third clinical issue for speech pathologists and AAC users regarding the implementation of “eligibility” criteria. Children have been excluded from AAC services because of their cognitive level, as AAC intervention was often disregarded as advantageous for these groups of people. AAC is often only implemented when it seemed that spoken communication would be unable to assist the individual’s needs, resulting in young children with severe communication problems often not receiving AAC intervention until they were older, resulting in delayed communication (Wilkinson and Hennig, 2007). A second problem regarding eligibility is the fact that purchasing an AAC device is often a large expense, evidenced through McFadden’s opinion that “the only sad thing is the expense to buy the next new innovation” (McFadden, 1995). He believes that the responsibility for this expense belongs to federal governments (McFadden, 1995). While government funding has improved in helping to cover the cost of AAC devices over the past decade, unfortunately the use of candidacy criteria as a basis for exclusion is still in practice (Wilkinson and Hennig, 2007). It is an important clinical implication that speech pathologists need to take into consideration.
- Abbott, A. (2009, 11th March 2009). York University Speech. Anne-Abbott, [web log] Retrieved from: http://anne-abbott.blogspot.com.au/2009/03/york-university-speech.html [Accessed: 22nd March 2013].
- Beukelman, D. and Mirenda, P. (2005). Augmentative and alternative communication: Supporting children and adults with complex communication needs. 3rd ed. Baltimore: Paul H. Brookes.
- Everyonecommunicates.org (2009). Everyone Communicates – Personal Stories – FC Users. [online] Retrieved from: http://www.everyonecommunicates.org/stories/individualstories.html [Accessed: 26 Mar 2013].
- Mcfadden, D. (1995). AAC in the Community – A Personal Viewpoint. Widening the Perspective, 1 (1), pp.90-91. Retrieved from: http://www.acipscotland.org.uk/McFadden.pdf [Accessed: 26 March 2013].
- Novita (2003). Types of Augmentative and Alternative Communication (AAC). [online] Retrieved from: http://www.novita.org.au/library/Factsheet-AAC_types.pdf [Accessed: 22 Mar 2013].
- QLD Communities (2009). Complex Communication Needs. [online] Retrieved from: http://www.communities.qld.gov.au/resources/disability/community-involvement/communication/documents/complex-communitaction-needs.pdf [Accessed: 22 Mar 2013]. Schladant, M. (2011). An Examination of Parent Perspectives on Augmentative and Alternative Communication Systems in Children with Fragile X Syndrome. University of Miami Scholarly Repository, 1 (1), pp.1-107.
- Schladant, M. (2011). An Examination of Parent Perspectives on Augmentative and Alternative Communication Systems in Children with Fragile X Syndrome. Ph.D. University of Miami.
- Wilkinson, K. and Hennig, S. (2007). The State of Research and Practice in Augmentative and Alternative Communication for Children with Developmental/Intellectual disabilities. Mental Retardation and Developmental Disabilities Research, 13 (1), pp.58-69.