In November 2018, the charity Scottish Autism held a two-day conference in Glasgow, and alongside this, there was a series of fringe events convened by PARC. I organised and chaired a session on the theme of ‘Communication’ as part of the PARC Fringe.
There were four presentations which were interspersed with related videos and discussions on topics which had been decided in advance. In summary:
Dr Marion Hersh discussed the use of AACs (Augmentative and Alternative Communication) as a way to expand opportunities and not restrict them i.e. to enable people to express more than the basics. Marion explained, for example, that a lot of systems for speech support such as PECS (Picture Exchange Communication System) were developed without the input of end-users, including their layout.
Dr Wenn Lawson talked about the importance of gaining recognition of the communication styles of non-speakers, and underlined the need to provide people who use typing to communicate with the time and patience they might need.
Dr Dinah Murray spoke about her work on the National Task Force, including plans to enable progression in training for care workers to result in them being in charge of communication, for example, rather than moving into management.
I summarised my own research findings on the communication of autistic children and adults as well my plans to develop a strengths-based model of communication support for use in schools.
We had two discussion topics (having started with three, but Wenn had covered quite a lot in his presentation in relation to one of them, so we decided not to go over the same ground again). I didn’t know all of the people present, and so it isn’t possible to credit individuals with their suggestions and comments, as I explained at the time to the session participants.
‘When attempting to understand and collect the views and perspectives of autistic people, are there better expressions we can use than “listening to the voice” and “enabling the voice” etc., which place an emphasis on speaking? If so, what are they?’
Suggestions and comments:
• “Attending to the perspective of”
• Using Photovoice
• It’s about relinquishing power, and being explicit about that power
• Sharing the power/sharing agency
• Having a platform/providing a means
• Changing the frame
• Shifting the attention/perspective
• Attending to autistic people/removing barriers
‘What changes or adjustments should be made at public events – e.g. conferences, public meetings, debates – so that people who don’t use speech as a primary means of communication, or who experience inconsistencies in their ability to use speech, can take part and contribute?’
Suggestions and comments:
• Video submissions
• Being able to submit questions in advance
• Being able to submit questions via typing/writing (a possibility we had for the Communication session)
• Seeing presentation slides in advance
• Having a text version of slides
• More technology generally is needed
• Having pauses/silences after each question
Marion also made the point that generally, conferences are very intense and rushed and that there is a need to slow things down to make them more accessible for autistic people.
Obviously, there is a very long way to go in all of these areas, and our own session relied on speech to a relatively high degree. However, the more these issues are aired, the more the range of communication modes used by autistic people (and others) will be recognised, valued and supported. My own particular wish is that autism conferences pay much greater attention to the communication needs and modes of autistic people, an understanding of which, if anything, seems to be going into reverse, if my own experiences are anything to go by.
Many thanks to PARC and to Kabie Brook in particular for the hard work that went into organising the Fringe event, and to Scottish Autism for their generous funding.
Dr Rebecca Wood.