Nothing about us without us
Who: Donaldson and colleagues
Journal: Perspectives of the ASHA Special Interests Group
Title: “Everyone Deserves AAC”: Preliminary Study of the Experiences of Speaking Autistic Adults Who Use Augmentative and Alternative Communication
Autistic Adults & AAC
AAC is Alternative & Augmentative Communication.
This is all the ways we communication without talking. It can be “aided”, like a tool or device such as a letter board or speech-generating device, or “unaided”, like gestures and sign language.
AAC is not just used by those who do not speak. Zisk & Dalton described three types of speech:
Intermittent speech – cannot always speak
Unreliable speech – speech doesn’t always match intended meaning or preference
Insufficient speech – can speak accurately, but not sufficiently to express everything they wish to communicate
There is no research into the use of AAC by autistic people who can use speech, so this is what this study looked into. They wanted to understand:
– Communication choice
– Communication access
– Attitudes relating to communication
– Recommendations for the future
There were six participants, which is a small number but is normal for a preliminary study. There were 2 females, 1 male, and 3 nonbinary people. All were white. Two primarily used AAC, 3 used AAC and some speech, and 1 primarily used speech.
One of the three authors of this study is a speaking autistic adult who uses AAC.
They found five themes;
– AAC was discovered as an adult
– Forced communication
– Respected choices
– Factors which impact choice
– “AAC is not weird”
Theme 1: AAC Discovered as an Adult
All the participants discovered AAC in adulthood, and reported being offered few, if any, alternative means of communication as a child.
They sought alternative means of communication because speech did not feel normal, natural, and/or successful for them.
Theme 2: Forced Communication
All participants reported struggling when their communication choice is forced to be speech. One reported having their AAC device removed from them in hospital. The response of others to AAC, such as impatience, not waiting for a response, or asking multiple questions at once, also made AAC use difficult.
“I primarily tried to use nonspeech forms of communication when I could but everyone else pushed for speech”
“I was in speech therapy […] until I was 10. My speech was exhausting, and didn’t feel natural. I did it because it was the only thing people would respond to.”
Theme 3: Respected Choices
Communication autonomy = being able to choose the communication modality which is best suited to their current needs & the situation
Trusted community = those who create an environment which is open to and responsive to all communication methods
“What makes communication successful for me is when i can use the method that works best for me in the moment, and when the other person just accepts that method.”
“I wish I could use AAC more. I am so much better a writer than I am a speaker.”
“I have experienced a lot of encouragement from other AAC users online which has really made a difference. I experienced kindness and acceptance for the first time ever with my communication needs.”
Theme 4: Factors that Impact Choice
Three main factors impacted communication choice;
– Mental & physical state, including burnout, stress, exhaustion, light sensitivity, fine motor control, and more.
– Modality features, including the light, weather, temperature, tech efficiency, volume control, and display, as well as the requirement for low-tech backups in case of low battery on the primary device.
– Safety and trust. The individuals feelings or acceptance & comfort using their preferred method of communication.
“I do not feel remotely safe or comfortable using AAC at home.”
Theme 5: “AAC is not weird”
Participants emphasised the importance of accepting AAC as communication. This included the deconstruction of both external and internalised ableism, and the rejection of speech as a barometer of successful communication.
“Don’t shame your peers for using AAC. Don’t shame your patients/students/clients for using AAC.”
“I USED TO have negative beliefs about AAC, but have since shed them. A lot of internalised ableism has been unlearned through a lot of hard work.”
The participants recommended the following;
– Promote use of all communication
– Presume competence
– Allow adequate time & attention
– Increase education around AAC
– Talk to AAC users