DEAL Newsletter 2008 (2) - Augmenting the Speech of People Diagnosed with Autism/ASD

 

DEAL COMMUNICATION CENTRE
NEWSLETTER
2/2008
October 2008

Augmenting the Speech of People Diagnosed with Autism/ASD:
Assuming Competence and Addressing Movement

Rosemary Crossley

Since the 1970’s Augmentative and Alternative Communication (AAC) practitioners and manufacturers have focused on the development of practical fixes for the individual communication aid needs and access problems of people with obvious physical disabilities. Now, in addition, we need to turn our attention to people with less obvious movement disorders, such as autism, and need to open up new possibilities for their participation and development.

We will never devise a generic AAC therapy that is suitable for everyone with autism, because Autism Spectrum Disorder (ASD) includes people with a large range of different speech and movement disorders (as does cerebral palsy). It should, however, be possible to devise a lexicon of movement disorders such as disinhibition and perseveration, and to assemble a therapeutic pharmacopeia to address them.

Presuming Competence
Typically, successful AAC intervention is based on an underlying presumption of competence. We keep trying different access strategies with a non-speaking child with severe athetosis because we presume that the child has both something to communicate and the motivation and potential to be an effective AAC user. Consequently, we feel the onus is on us to find the right strategy for the child.   

Negative and often uninformed articles about autism in the media have contributed to a presumption of incompetence in people with severe autism (those who are most likely to need AAC) and to a belief that such people are not interested in personal interaction. This has resulted in a shift in onus - the autistic individual is expected to to prove their worthiness, either by demonstrating skills or by co-operating with boring and repetitive tasks of no obvious relevance to communication.

Often, too, they are called on to demonstrate these skills without the adaptations that would be necessary to permit this - they are, for example, expected to read aloud or write unaided to demonstrate literacy, regardless of their obvious speech and hand function limitations. When they fail, many well-intentioned therapists and teachers give up at this point - partly because a student’s failure with the set tasks confirms their underlying beliefs about competency, and partly because they feel bad about ‘forcing’ communication on someone who is believed to prefer isolation.

Consequently, AAC intervention for children with autism is in many specialist schools restricted to the Picture Exchange Communication Strategy (PECS), a system which is intrinsically limited to the communication of basic needs or wants (Gresswell & Moore, 2006), or manual sign, the  effectiveness of which may be restricted by the children's hand function impairments and the limited sign vocabularies of their communication partners.

DEAL staff have seen approximately 1,000 individuals with a diagnosis of ASD since 1986, all of whom lack functional speech. Virtually all of those born after 1980 have been exposed to sign and/or PECS, but fewer than 50 people have arrived using more than 100 signs or symbols. Most individuals have been reported to understand many more signs than they are using, just as it is assumed that people understand many more words than they acctually say.

Assessment
Communication, in any mode, is a complex motor task requiring accurate timing and the production of precise movement sequences. We should not assume that any speech impairments are primarily due to cognitive impairments, and we should not equate speech fluency and intelligence. The assessment of cognition in people without normal speech and hand skills is extremely unreliable. Many people assessed as significantly intellectually impaired prior to accessing AAC have successfully undertaken tertiary education once their communication and access impairments have been addressed (Crossley, 1997).

Lack of speech does not mean lack of understanding, but children with little or no speech need an effective means of communication before they can show us what they know. Formal IQ assessments administered to children may produce meaningless results if the person cannot talk, write, sign fluently, or point meaningfully, or if the person is not motivated by the tests or is in a state of acute anxiety (Dawson, Soulières, Gernsbacher, & Mottron, 2007). The results of IQ testing do not provide a good basis for AAC intervention.

When assessing a child with limited or no speech it is important not to base our intervention on their appearance, their behaviour, their daily living skills, their reported academic skills, or their previous cognitive assessments. All of these things are likely to be affected by the same neuro-motor problems that have impaired the person’s speech, or by the frustration of being unable to communicate effectively (Donellan & Leary, 1995).

    It is not uncommon to find that children without speech have acquired far more knowledge and skills than they have been able to show. Recently a 17-year-old girl and an 11-year-old boy from different schools - both of whom have diagnoses of autism, and both of whom were described as having severe intellectual impairments, limited comprehension, and no literacy skills -  attended DEAL. The families reported that neither of the two had been given a means of answering YES or NO by their special school teachers or therapists, much less access to any other AAC (other than PECS symbols - and even these were not being used at home).

Given access to a Twin-Talker recorded with YES and NO, and having been shown how it worked, both students were immediately able to answer 10 simple yes/no questions correctly and independently. They also both successfully undertook multiple choice reading assessments requiring them to read incomplete sentences and select the correct word from three widely-spaced 36pt-font options to fill the gap. Both students were able to point clearly and independently, although neither had fully-developed index finger isolation.

The abilities of both students been significantly under-estimated. While it may still be possible for the boy to move into a mainstream class and obtain an academic education, the 17-year-old girl is about to move into an adult day program and any such opportunity has been missed. Every adult service has some clients like this, people whose skills and potential were missed while they were at school. Sadly, adult services rarely employ speech pathologists or offer formal AAC programs. They tend to presume that everything that could be done to assist their clients learn specific communication skills would have been done while they were at school. The specific skills for carrying out on-going reviews and partner training regarding communication are often not present in adult services.

Alternatives to Formal Assessment
Rather than requiring formal assessments we prefer to gather information about the child’s interests, pointing, and motor planning skills by observation, by questioning the child’s family, and then by assembling some fun stuff and playing around. We offer a variety of aids and strategies for the child to try while playing games, reading books, answering questions, and using computers - whatever motivates the child - and then we select the communication aids or strategies that work best and give them to the child to use at home and school.

While multiple sessions will be needed to establish the optimum long-term augmentative strategies for the child, our aim is to send the child home from the first session with a functional strategy for answering ‘Yes’ or ‘No’, usually by pointing to the desired response on a laminated Yes/No strip or by selecting from Yes/No cards (both of these display symbols and words).

Movement Issues Affecting Pointing
Index finger pointing is an important skill that should be taught to every child with speech impairments who can use their hands. It may be necessary to set up fun activities such as finger painting or using push-button toys that can be operated with one finger. Supergluing or velcroing a plastic cap from a soft drink bottle on to a switch makes a useful index finger isolation button for use with a switch-adapted mouse. Initially it may be necessary to do the activities co-actively, helping the child to extend their index finger while flexing the other unwanted fingers. Eye/hand co-ordination may be developed at the same time by refusing to let the child touch any item they are not actually looking at (however, this should only be done within the tolerance of each individual).

Communication Equipment


Many children with autism find achieving index finger isolation a challenge.

The equipment illustrated is useful for developing index finger pointing, and includes

  • index finger isolation switches – the larger from Enabling Devices, the smaller made by attaching a bottle top to any small switch – to use with toys or switch-adapted mice
  • VOCAs (Voice Output Communication Aids) with small keys and deep keyguards, for practice activities prior to selecting a long-term aid
  • slanted stands for equipment to encourage wrist extension
  • rods or thick markers for aid users to grasp with the unwanted fingers – the longer rod may also be used to control impulsivity or perseveration
  •  finger-pointing ball from Enabling Devices – very popular with young children

DEAL’s therapists have generated a list of 25 specific problems affecting finger pointing (see Attachment 1), each of which has been found in some people with a diagnosis of autism, and each of which has a specific treatment. Effective intervention for this population requires accurate differential diagnosis of the difficulty and individually tailored programs that address not autism per se but any motor problems found.   

For example, a person with autism who points repetitively may be helped by using an occupational therapy technique devised for people who exhibit perseveration following brain injury.  In this method the therapist interposes an unrelated action between two desired actions, breaking flow and forcing the person to refocus. Until the perseveration is addressed, the individual may be unable to access any communication aids effectively and is likely to ‘fail’ any non-speech assessments (vocabulary tests, for instance) which require pointing responses.

Facilitated Communication Training
One AAC technique that many people with autism have found useful is facilitated communication training (FCT). FCT is a strategy for teaching people who need to use AAC to use communication aids with their hands. It is particularly appropriate for people who can move their hands and arms freely but who have difficulties with other aspects of communication aid use such as motor planning, eye-hand co-ordination, scanning displays, index-finger isolation, and pointing (Crossley, 1994).

In facilitated communication training (FCT) a communication partner (facilitator) helps a potential communication aid user to overcome difficulties in hand use and develop functional movement patterns. The immediate aim is to allow the individual to make choices and to communicate in a way that has been impossible previously. Practice using a communication aid such as a picture board, speech synthesizer, or keyboard in a functional manner is encouraged, to increase the person’s physical skills and self-confidence. As the student’s skills and confidence increase, the amount of facilitation is reduced. The ultimate goal is for students to be able to use the augmentative communication strategies of their choice independently.

Facilitated communication training has been criticized in the past because of concern that messages generated with facilitation originated with the facilitators. In some cases involving naïve or poorly trained facilitators this may well have the case. At this stage, however, people around the world are moving through the facilitation process to independence in communication aid use, and it is clear that facilitation is not a sham but a therapy technique which can produce significant gains if it is used well (Stanton, 2004, Biklen et al, 2005).

    Every effort should be made to provide people who access keyboards or complex communication displays with facilitation with the skills to independently access other aids containing a more limited range of options, (YES/NO boards, PECS cards, multiple-choice boards) so they can communicate in the absence of a facilitator, and so they can confirm or reject communication produced with facilitation.

In Conclusion
Young children should continue to receive speech therapy while also learning to use augmentative strategies. If dyspraxia is an issue, such training should ideally be from a therapist with PROMPT training  (Hayden, 2000). However, it may be some years before it becomes clear whether a given child’s speech will be functional, and the child should not be left frustrated and without a means of communication while we wait on speech.

Because AAC intervention for people with ASD is relatively recent, many adults have not had access to any AAC. Adults without functional speech (including those with echolalia or stereotyped speech) can certainly benefit significantly from AAC, and may have far more skills than have been recognized. Every effort should be made to obtain an AAC assessment and to ensure that the necessary training and support are provided to allow individuals to develop their skills and confidence in using their new voices.

Ironically, once adults with autism start to achieve success with communication aids they are positively desperate to interact. On my regular visits to a centre for adults with autism I am besieged by people who want to communicate – in particular, by the most severely disabled people, those with no speech or sign. These people initially needed to be convinced to participate, but once they found a means of communication, however laborious, they were desperate to say things they had been saving up for twenty or thirty years.  Common sentiments, expressed in many different ways, are “Why can’t I talk?” and “Make me talk.”

Even if we cannot answer that question, and although we cannot enable adults with autism to speak, we do now have AAC strategies that can allow most people with autism to succeed in communicating and in demonstrating their underlying abilities. It is up to the AAC community to challenge the negative presumptions about severe autism that have left so many people living in endless frustration, with no means of expression, and to help people with autism - and their families and teachers - realize their potential.

 
References
Biklen, D., Attfield, R., Bissonnette, L., Blackman, L., Burke, J., & Frugon, A. (2005). Autism and the myth of the person alone. New York: New York University Press.
Crossley, R. (1994). Facilitated communication training. New York: Teachers College Press.
Crossley, R. (1997). Speechless. New York: E P Dutton.
Dawson, M., Soulières, I., Gernsbacher, M.A., & Mottron, L. (2007). The level and nature of autistic intelligence. Psychological Science, 18(8), 657-662.
Donellan, A., & Leary, M. (1995). Movement differences and diversity in Autism/Mental Retardation; Appreciating and accommodating people with communication and behavior challenges. Madison: DRI Press.
Gresswell, A. & Moore, R. (2006). The appropriate use of PECS? Communication Matters 20(1), 2-3.
Hayden, D. (2000). What is PROMPT? Retrieved from www.promptinstitute.com
Stanton, M. (2004). Facilitated communication training practice standards. Bolton UK: Bolton Institute.

This article was originally published in AGOSCI IN FOCUS. Vol. 26, No. 2, November 2007, pp 12-14, and thanks are given to that journal for reprinting it here.

 
Attachment 1
Hand function problems affecting communication aid and keyboard use
1.    Impaired eye/hand co-ordination
2.    Difficulty scanning the communication display
3.    Sequencing problems
4.    Paralysis (uncommon in people with ASD)
5.    Low muscle tone
6.    High muscle tone
7.    Tremor
8.    Difficulty isolating and/or extending an index finger
9.    Undecided hand dominance
10.    Using both hands when only one is required
11.    Radial/ulnar muscle imbalance
12.    Range of movement limitations
13.    Difficulty initiating movement
14.    Impulsivity
15.    Perseveration
16.    Hemi-neglect (uncommon in people with ASD)
17.    Unstable sitting position
18.    Proximal instability
19.    Reduced proprioception
20.    Involuntary movements
21.    Dysmetria (often associated with use of peripheral vision)
22.    Movement planning difficulties - dyspraxia
23.    Obsessions with particular keys or key sequences
24.    Automatic completions of words or motor sequences
25.    Disinhibition/distractibility


 
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