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Augmentative and alternative communication supports for adults with autism spectrum disorders (summary)

Non-electronic
AAC
 
and
people
with
autism

Background

Autism spectrum disorder (ASD) refers to a group of lifelong developmental disabilities. Most research into the condition has focussed on the needs of children. What research there is into adults with ASD shows the need for ongoing services and support for them and their families and carers across the whole range of ASD. This is especially the case for those people who have complex communication needs (CCN) associated with low IQ and who might benefit from augmentative and alternative communication (AAC) to maximise their independence and participation at home and in the community. There is little research into outcomes of AAC provision for this population.

In 2005 in Australia a government-funded low-technology AAC scheme, the Non-Electronic Communication Aid Scheme (NECAS), was developed. This aimed to 'enhance communication, participation and independence for people with communication difficulties'. 206 of the people provided with services through NECAS had a diagnosis of ASD. This study aimed to explore the views and experiences of people with ASD, their support workers and family members, regarding the outcomes of providing them with communication aids.

What did they do?

The researchers used semi-structured interviews and qualitative analysis to explore people's views and experiences.

The study included six people with ASD, who had accessed NECAS at least six months previously, seven support workers, who knew individuals well, and two family members. The original aim was for the people with ASD to report their own experiences with input from others who were important in their lives. However, as the support workers and family members were found to be the main responders in all of the interviews it was their views and experiences that became the main focus of the analysis.

Each participant was interviewed with their support worker or family member. A semi-structured question guide was used to be sure that a range of issues were discussed in all interviews. The interviews were transcribed and analysed into themes.

What did they find?

Two main themes came out of the analysis of the information gathered. The first was termed 'Proven Potential'. This covered the benefits AAC provided for the participants and their communication partners. The second theme was 'Inconsistent Action', the fact that although support for the use of AAC was common its uptake and support in everyday life was inconsistent for a number of reasons.

The benefits of AAC for people with ASD were most frequently reported as being supporting their understanding e.g. using visual timetables to increase awareness of what was going to happen or supporting routines. Visual AAC supports were felt to reduce levels of anxiety and so decrease incidences of challenging behaviour too. One support worker indicated that AAC led to benefits such as improved confidence and increased independence through the provision of cards to use in shops and bars. This also helped unfamiliar people to communicate more successfully with the person with ASD.

Other benefits for communication partners were in communication passports or 'chat books' helping people to understand and recognise communicative behaviour and respond to this appropriately and consistently.

Although several positive benefits of low-tech AAC support were identified there were difficulties noted by support workers. These were divided into 'Finding the Time' and 'Knowing What to Do', with additional issues related to individual's views and attitudes to AAC.

The 'time' element related to both preparation of AAC resources and the time needed to actually make the referral to NECAS. The lack of knowledge tended to relate to care staff turnover and lack of training, experience and support to use the system.

Within care settings not all staff used available AAC resources consistently, which could lead to increased anxiety levels for people with ASD. Some care workers were not willing to support all AAC strategies; they reported that some were not practical to use in the community and might have a negative effect on the way the user was viewed by others. Most carers wanted AAC systems to be simple in order to make them easier for staff to use.

Conclusions:

An important finding was the emphasis placed on the use of AAC to support understanding and reduce anxiety, rather than to support expressive communication. This might be related to the use of visual supports for communication being easier for carers to learn to use than more complex expressive communication systems, particularly in view of the high turnover of staff and the implications of this for staff training needs.

The focus on comprehension might also be related to the social communication difficulties characteristic of ASD, meaning that participants generally avoided social/expressive interactions.

The importance of ongoing professional support, training and education in the use of AAC systems and the need for ongoing advocacy for adults with ASD who use AAC is also recognised.

Cautions:

The sample size was small the qualitative analysis of the data means that the finding of this study cannot be generalised to the wider population.

It is possible that people volunteered to be part of the study because of positive experiences of AAC use, therefore the findings might not be truly representative of people with ASD as a whole.

The researchers did not carry out their own assessments and relied on pre-existing diagnoses, which also restricts the potential to generalise their findings.


Things you may want to look into:

Demonstration of a method for assessing semantic organization and category membership in individuals with autism spectrum disorders and receptive vocabulary limitations

Strategies in Construction and Interpretation of Graphic-Symbol Sequences by Individuals who use AAC Systems

Can the facilitated communication method support autistic people, according to facilitators' opinions?

Adults with Autism


Added to site August 2015

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