Ten things about AAC and being an AAC user

Throughout I will use the term AAC, this stands for ‘augmentative and alternative communication’

Being an AAC user lots of people don’t know how to interact with us AAC users. Or they do things which are frustrating or plain rude.

Here I have ten tips and information about AAC and being an AAC user.

How do others respond to me using AAC?

This can massively range. Some people are great and just communicate with me, don’t read over my shoulder and give me time to type.

One of my best places of acceptance as an AAC user is the hearing voices network group I attend every week.

I’ve never explained my AAC to others and nor does anyone else. The group give me time to type and will check in with me if I’m wanting to say something about the conversation the group is having. They are incredible.

I have unfortunately had a lot of bad and negative experiences.

These include:

⁃ A mental health nurse who refused to talk to me saying that communication via AAC was not me properly engaging. And she ordered a mental health act assessment all because I use AAC

⁃ Then a member of catering staff on a psych ward. She asked me what I wanted to eat and I said ‘what is vegetarian?’ Via my AAC. I said this 7 times and she only responded when another patient stepped in and told her she was being rude and I was talking to her. She then didn’t speak to me and would not listen to my AAC and only got my food through the other patient.

I think it’s very varied how people respond to me using AAC.

I find that fellow neurodivergent people are generally better and respond in a more positive way. However, I have also had neurodivergent people occasionally react negatively, or have been confused by my using AAC.

How easy is it to learn to use AAC?

This honestly depends on the person and the type of AAC they are going to be using.

I will explain the process i went through to learning how to use AAC, ad different types of AAC.

I first started out with a free or cheap (about £10) app for my ipad. This primarily was typing and then the app would speak. But i could also save phases and could add some pictures to different buttons.

It worked well for whilst i was using AAC only occasionally, as the quality of the sound was not great. So people would struggle to understand what i was saying.

Then i brought Prologue4text after some research and talking online to other AAC users. Proloquo 4text is an app which primarily uses typing to communicate, and then the app speaks what i have typed. I can save pre written buttons which could be a single word or a phrase. This was relatively easy to use as was just typing, although difficult and painful with the tics.

Then back in 2018 and I was sectioned, and manic and brought proloquo2go. This is made by Assistive Ware, the same company that makes prologue4text. Proloquo2go is, however, different to 4text. Proloquo2go is a picture/grid based AAC. So instead of typing, you would combine what you want to say by pressing individual words or short phrases, and build up a sentence that way. These buttons can have both a symbol/picture and words, just symbols/picture or just words.

I also have TD Snap which is a similar app to prologue2go but made by Tobii Dynavox.

For using symbol based AAC you do need to practice. It takes time to set it up, a lot of time. And then practicing to increase the speed and ease at which you can do it. This does take time. I practice by posting on social media, as can copy and paste from the app. This helps me to learn where buttons are.

Then I also have a Tobii Dynavox eye gaze device, which I got through Disabled Students Allowance.

Eye gaze takes a lot of practice. Also faffing with different settings. I practice with some games on the device, and then also posting on social media. It is also a case of trying different settings on the device and finding different seating position, and getting the right lighting.

Three things to NOT do with an AAC user.

1. Don’t read over their shoulder (unless they have asked you to)

2. Don’t take away their device, this is like taping shut someones mouth

3. Don’t read and interupt whilst someone is halfway through typing, this is rude and also you might guess incorrectly what they will finish typing. (unless the person asks you to read each word as they type)

Three things to do with an AAC user.

1. Allow them time to type on their device (in whichever way they type)

2. Make sure they always have their device, or a way to communicate, at all times.

3. Accept their way of communicating, all ways.

Verbal speech is NOT superior to using AAC.

A lot of people often say how verbal speech is superior to using AAC. With kids people don’t want to allow them to start using AAC, as they think they will then never develop verbal speech. Research shows that introducing AAC to kids can mean that they do develop verbal speech. And anyway regardless of if people develop verbal speech or not introducing AAC to kids ASAP is vital for them to be able to communicate, reducing stress and anxiety.

I think as a late AAC user, I first started using it on and off about 9-10 years ago, people around me often don’t understand why I would use AAC. Especially when i could still verbally speak, people just did not understand it. For me it was a case of AAC helping to reduce anxiety, less overwhelmed, more able to communicate what i needed. Even without the constant vocal tics, and no voluntary speech, I would still use AAC full time as a combination of tics, anxiety, speech difficulties linked to schizoaffective, and more means that verbal speech is not accessible for me.

AAC is equal to verbal speech.

AAC and verbal speech

Some AAC users may be able to make some mouth noises.

For me I am a full time AAC user, but I make constant mouth noises. I have Tourette Syndrome and I have constant vocal tics, and I do literally mean constant, as in I can struggle to breathe due to how constant the tics are. I describe myself as having ‘no voluntary speech’

For me this means that although I make constant mouth noises, however they are involuntary vocal tics.

If an AAC user can make mouth words or noises that doesn’t mean that their need for AAC is not needed.

Often people presume that because I can tic vocally that I therefore must be able to speak verbally.

Part time vs full time

Some AAC users use AAC part time, and others are full time users.

There could be many reasons why some people use AAC part time. These could include: anxiety, selective mutism, speech difficulties linked to a mental illness or physical disability etc.

People who use AAC part time are not lesser than full time users, and part time users are not lying about needing to use AAC when they use it.

If you think about it in terms of glasses, some people need glasses full time, others may need to use glasses only to watch TV or reading.

Part time AAC users are valid. Some part time users may become full time users, especially if they find that using AAC helps them and makes their life better and more meaningful to use AAC full time.

Low tech and high tech AAC

The apps which I have on my ipad and my eye gae device are ‘high tech’ AAC methods. Whereas ‘low tech’ AAC methods may be print outs of some symbol based AAC methods, or flashcards with information on.

I use a combination of both high tech and low tech AAC. The majority of the time I use proloquo 4text as a high tech typing AAC. I will also use symbol based AAC and eye gaze device, all these are high tech.

However, I also use low tech AAC on and off. I have flashcards in my pocket at wheelchair rugby league training, so I can quickly ask if people ask for my name, or question my tics. I also use Stickman Communication cards and may use these to explain something like one of my disabilities, to explain a situation. I find having some form of low tech AAC helpful as a backup and for situations where having my ipad is not suitable, like with swimming or wheelchair rugby league.

Items that AAC users might want to take out with them

• Back up AAC eg a phone as back up to a tablet

• Power pack

• Charging wire and plug

• Some method to carry the AAC device. Either a shoulder strap, harness, or a mount on a wheelchair.

• Something to protect the device from the elements, eg a water proof covering

• Low tech back up

• Bluetooth speaker, or a built in speaker to the device

Communicate with AAC users

I always have someone with me when out of the flat, and the amount of times that people, very often healthcare professionals, talk to the person with me is ridiculous.

At the hospital the other week my PA had to constantly tell the various professionals to speak to me, and that I would be able to reply to them.

As a visibly disabled person I so often have interactions with others where they talk about me to other people.

The consultant the other week was asking my PA questions about my disabilities and health care. My PA had to tell him several times to ask me.

When you communicate with AAC users actually speak to us, unless we ask you otherwise.

AAC can be for anyone if they need it, whether part time or full time, for a temporary basis, or a permanent one.

The main thing to remember is that verbal communication is NOT superior to AAC communication.