Let's Talk AAC: The Right To Be Informed About People and Events (Communication Right #8)

June 22, 2022 NWACS

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by Kathy Smith, MSPA, CCC-SLP/L (Speech-Language Pathologist, retired); NWACS Vice President

reading time: 4 minutes

The views expressed in this post are that of the author and do not necessarily reflect the views and policies of NWACS. No endorsement by NWACS is implied regarding any device, manufacturer, resource, or strategy mentioned.

Right #8 of the Communication Bill of Rights reads: The right to be informed about people and events in one’s life.

This right reminds us of the importance of taking time to share with AAC users

about what is happening with people in their lives
and about events that will probably affect them.

Too often, we do not take the time to thoroughly communicate this information to AAC users.

The first part of Right #8 is to be informed about people, such as

family members,
friends,
teachers,
support people, etc.

AAC users develop strong relationships not only with family or pets, but also with friends, teachers, or support people. It has been documented that AAC users tend to have fewer contacts with other people as compared to their verbal peers. Thus, these few contacts may be extremely important to an AAC user. They need to know what is going on with the people in their life even if the information can add disappointment, anger, or too much excitement. Examples might be learning that a favored family member or teacher will be gone for a long length of time. Or that a favorite relative is coming to visit, or is leaving. Providing extra time for the AAC user to learn about the change can allow them to adjust and talk about their emotions. It also gives them time to prepare for the change by participating in an activity, such as creating a goodbye message for a grandparent.

The second part of Right #8 is to be informed about events. In addition to learning about changes with people they know, the AAC user needs to know about events in their life. They may look forward to some events. Changes in plans can result in strong feelings. Many events can be unpleasant or stressful such as

going to physical therapy,
getting an immunization shot,
staying home with a care provider while parents are out,
or not going to church next Sunday even though the family routinely goes.

These and many more events can be unpleasant, unexpected, and/or stressful for the AAC user. Several of these stressful situations may arise in just one week. How can the AAC user be supported to become more comfortable with these changes and/or stresses?

A first step may be adding needed vocabulary to their AAC system. Any vocabulary that is added or changed needs to be reviewed and discussed with the AAC user. For a quick fix, set up a place on the AAC system for unexpected and/or temporary messages.
When will the event take place? Using a visual system such as a calendar, marking the day the event takes place may give the AAC user a sense of predictability and calmness.
What other information needs to be shared with them? The AAC user needs to be told the basic information, but also any extra information that will impact them. Examples might be:
- Who else will be with them?
- Where will the event take place?
- How long will it take?
- What will happen during the event?
Let the AAC user know about changes to the schedule/plans as soon as possible.

Most importantly, the AAC user needs an opportunity to discuss, ask questions, and share their feelings about this new information. Be mindful of the time and effort required to communicate using AAC. It is important to allow enough time to respectfully inform them about a person or event. Including enough time to address all the issues and complete the conversation. Ideally, with enough time for follow-up conversations to give them opportunities to ask more questions and receive more support. This is especially important when the topic is emotionally charged. Talking about changes in people and events more than once, especially if it results in uncomfortable feelings, can help reduce anxieties.

Beware the impulse to not share information about people or events important to the AAC user. Caregivers are often concerned that the AAC user will get too upset and will display negative reactions. Especially with information that is likely to result in strong uncomfortable emotions. It may seem that being informed early on about "negative" information increases being upset. Caregivers may wish to tell the AAC user the information at the last minute to avoid the hours or days of them being upset. This strategy may be intended to support the AAC user. Instead, it might cause more intense reactions at the time of the event and possibly in the future.

Not knowing when something negative will happen might cause long-term behaviors unrelated to specific events. Fear of not knowing what will happen in the future can escalate challenging behaviors. Being informed well ahead of time can support the AAC user in processing and accepting "negative" news. They have time to communicate their feelings about the information. There may even be time for them to decide on a strategy to get through the event as pleasantly as possible. An early timeline may reduce stressful feelings in the future.

Giving AAC users both good and bad news about the people and events in their lives ahead of time is being respectful. It is also their right.