We take it for granted that AAC users will require some training in strategies for adapting to a brand new method of communication. Frequently overlooked though, is the educational needs of AAC user’s communication partners.

At our ALS center, patients and their families occasionally recount being confounded by others’ lack of skill in interacting with a person who uses AAC. While often the offender is an acquaintance or a stranger, more troubling to AAC users is when this individual is a relative or friend. Lack of skill on the part of a communication partner, especially one with whom we are close, can be interpreted as insensitivity and be especially hurtful. Our expectation is that this person should understand our needs.

No one is typically taught the nuances of interacting with someone using AAC. Nervousness due to unfamiliarity with AAC and eagerness to be of assistance can even lead to the very behaviors the user may find aggravating. In addition, personal preferences are at play and what one user finds helpful, another interprets as rude.

It is certainly unlikely that there will be a public education campaign in the foreseeable future offering tips on being a better communication partner to someone who uses AAC. Therefore we must come up with ways to teach, educate and sensitize partners about our own preferences.

Over the course of my blogs I will describe solutions I’ve developed with patients and families through the years. Today I’ll introduce the idea of the Communication Preferences Sheet. This is a proactive approach to improving interactions usually before problems are encountered. If a partner has already demonstrated behaviors which undermine communication, this approach avoids singling them out or making them feel inadequate.

What is a Communication Preferences Sheet?

It is a personalized list of the strategies and preferences which make communication easier for the AAC user. The sheet can be handed out to visitors or new communication partners. Another effective approach is to distribute it via email to friends and family. People typically appreciate being given some direction especially when it is upbeat and worded positively.

Here is an example (just to get your creative juices flowing for your own customized lists):

Dear Friends and Family,

This is a list of tips that can help us to interact more effectively. I have provided it to you because communicating with you is important to me.

Explanations:

• I have ALS (Lou Gehrig’s disease), a neurological condition that affects my ability to speak. It does not affect my thinking or hearing.
• I’m using different systems to communicate now including email, a paper communication board and a device that speaks the messages I compose.

My Strategies & Preferences

• Please find a position in front of me and at my eye level when you want to communicate with me.
• Please ask me if I would like you to finish sentences for me. In some situations it is helpful and other times it makes me feel rushed.
• Please ask me to repeat myself if you don’t understand me.
• If you can’t understand me you are welcome to read the screen where I compose my messages.
• Please remember to address me directly. I appreciate this even if the person with me is helping us communicate.
• Sometimes composing my messages can take a while. Your patience really helps me feel more at ease. Please don’t feel like you need to fill in the quiet.
• I now prefer communicating through email rather than on the phone since there is less time pressure. My email address is AR@instamail.com.

Creating a communication preferences sheet will help you avoid repitition, give partners confidence and allow them to side-step common problems that may interfere with interactions. Perhaps most importantly, it will help you explore your own thoughts on what makes communication work better for you.

I can think of many patients/friends over the years who have taught me how to be a better communication partner. I don’t expect I will ever stop learning and look forward to hearing from AAC users and their partners on this topic. My friend Mike Bougher who has lived a rich and full life with ALS for the past 9 years comes to mind. He has a lovely piece on communication on his website at quadbliss.com/communication_with_a_speech_impa.htm. More of his wonderful writings and art can be found at quadbliss.com.