AAC in Adults with Intellectual/Developmental Disabilities

This is a curated collection of information and resources related to supporting augmentative and alternative communication (AAC) with adults with developmental disabilities. We encourage you to explore and judge for yourself which to add to your toolbox.

These resources are for educational purposes. This is not an exhaustive list. Inclusion does not signify endorsement. Use of any information provided on this website is at your own risk, for which NWACS shall not be held liable.

Do you have a favorite resource or strategy that we missed? Send us an email to share!

NOTE: Intellectual and/or Developmental Disabilities (IDD) is a term that covers many disabilities, such as:

  • fetal alcohol syndrome

  • intellectual disability 

  • Prader-Willi syndrome

  • Rett syndrome

  • Williams syndrome

  • ADHD

  • Angelman syndrome

  • autism

  • cerebral palsy

  • developmental disability

  • Down syndrome

among others.

Developmental disability is a lifelong disability that is evident before the person turns 22. Intellectual disability starts any time before a child turns 18. Often the disability is present at birth. IDD affects the course of the person’s physical and/or mental development. IDD limits the person’s ability to function in three or more of the following areas of major life activity:

  • self-care

  • receptive and expressive language

  • learning

  • mobility

  • self-direction

  • capacity for independent living

  • economic self-sufficiency

What does supporting communication look like for adults with intellectual and developmental disabilities?

When we think of quality of life, we are thinking about psychosocial competence. One’s ability to maintain a state of well-being. To deal effectively with the demands and challenges of everyday life. Going deeper, it is life skills that enable us to manage everyday demands and challenges. 

The World Health Organization (WHO, 1994) identified a core set of skills that promote well-being:

  • decision making 

  • problem solving 

  • creative thinking

  • critical thinking 

  • effective communication (which includes literacy!)

  • interpersonal relationship skills 

  • self-awareness 

  • empathy 

  • coping with emotions 

  • coping with stress 

These are life skills. Skills in each of these areas provide a foundation for psychosocial competence. These life skills enhance the quality of one’s life. These are universally needed and/or desirable to be a full participant in everyday life. 

When we look even deeper, we realize that ALL the communicative competencies are needed to develop these life skills:

All the communicative competencies support well-being and quality of life.

People with IDD reach adulthood with a range of communication skills. Their communication abilities may be emerging. Or they may be able to communicate independently. Some adults with IDD do not have a reliable way of communicating using symbolic language. They may have developed unique, unconventional ways of communicating. Other adults with IDD use symbolic language to communicate anything to anyone in any situation. They may even be able to read and spell.

What does supporting communication look like for this age group? It looks like meeting the person where they are at and helping them build on their strengths. It looks like continuing to support their development of language, literacy, communication, and other life skills. It looks like supporting the goals they have for themselves.

Wait and be patient!

“Most important is: be patient! And not interrupt while they are still using AAC device to say something. Talking with AAC device is always more slow than mouth talking. Even the best AAC user with the best AAC device will still need more time and patience than mouth talkers. 

Many times AAC devices do not have exactly the right word a person needs. May need to look for a longer time to try finding a suitable replacement word. For example when C. wanted to talk about a specific kind of place but didn't have the right word, C. said “death park”. With a little bit of thought the person understood that C. was trying to say Cemetery!  

A person's way of using an AAC device, and how fast or slow a person is, have not much to say about a person's ability to think and understand.

Really is so important to keep waiting with patience!” ~ C., AAC User

Read more about providing AAC users opportunities to take turns in conversations and discussions: Let’s Talk AAC: More About The Right to Make Comments and Share Opinions

Be a good communication partner.

“I feel the key to good communication is having skilled communication partners.” ~ Beth Moulam, AAC User (on her blog)

An important part of supporting communication for this age group is by learning how to be a good communication partner. Good communication partners do the following:

  • ensure access

  • presume competence (making connections)

  • accept all forms of communication

  • pause and wait

  • listen actively

  • clarify and confirm

  • be respectful

  • model and coach

Read more about being a good communication partner: Let's Talk AAC: The Right To Access Environments and Interactions as Full Communication Partners (Communication Right #12)

Continue working on communication skills. 

It is important to continue developing communicative competence. To be a full participant in daily life, to self-advocate, and to have self-determination, a person must have autonomous communication! Human beings have the capacity to learn even in adulthood. 

It bears repeating. Many, if not most, agencies and organizations that provide job help to disabled adults look for the disabled person to have strong independent communication skills. Even many adult day programs need the people attending their program to be able to communicate without caregiver help. This is unfortunate. Many disabled adults who can successfully (and autonomously) communicate using partner-assisted methods, may not have the physical capacity for completely independent communication.

Age-related changes.

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“We have largely achieved the goals of integration in terms of where the disabled live. But we have fallen short of those goals in terms of how they live.”
— Samuel Bagenstos (2015)
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As people with IDD become adults, there are new age-related issues that influence communication and AAC use, as well as quality of life.

  • Often young adults age out of the school system without an AAC system they own, leaving them without an AAC system as an adult.

  • There are still many adults that have no or limited history of AAC use, which means they have developed a lifetime’s worth of behaviors and unique signals that serve as their primary means of communication. They may have also developed learned passivity and lack of interest in using AAC based on their life experiences. 

  • If the adult does have an AAC system, often there is limited appropriate vocabulary available to them.

  • Some adults with IDD are emerging communicators. Emerging communicators of any age can be tricky! Some seem to show little response to or interest in interacting with others. Most communication partners are not taught how to engage older emerging communicators.

  • The majority of communication partners in adult settings have a lack of AAC knowledge and training. So if the adult relies on a communication partner to assist with their communication, communication gets abandoned.

  • There is a huge lack of SLP, PT, OT support in adult day or residential programs. Many adults go YEARS without appropriate support of communication tools.

  • Available SLPs, OTs, PTs often lack AAC expertise, which often means no focus on AAC.

  • Adults with IDD will age and likely face health care issues - both their own and related to their aging parents. Aging means potential need for modifications to AAC systems and/or new AT equipment or interventions to accommodate new developing issues (e.g., arthritis, vision issues, hearing loss, cognitive changes, etc.).

Key Goals

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“I am a human being, not a human doing, not a human island.  I am interdependent.  So I need help with some things, OK maybe a lot of things.  Also, I am helpful and worthwhile to others in some other things, because that is the real meaning of life.”

~ Elizabeth (Ibby) Grace (from the blog post ‘I Am Not Independent.’)

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  • the person’s goals

  • self-advocacy

  • self-determination

  • communicative competence

  • literacy skills

  • work and leisure activities

  • developing, maintaining, and sustaining social networks

  • supportive and effective communication partners

What AAC Looks Like

  • multimodal

  • allows them to fully communicate about anything in all environments with all people they encounter

  • matches the access needs and other features needed by the adult

Helpful Strategies

  • ask the AAC user how you can be a good communication partner

  • provide enough wait time

  • be flexible

  • ensure AAC options are always available

  • accept all forms of communication

  • presume potential/competence

  • communication is more about social closeness (building and maintaining relationships)

    • support conversation skills and strategies

  • adults need language and skills related to

    • physical, mental, emotional, sexual health (including sex education)

    • boundaries, consent, healthy relationships

    • medical, disability, care needs

    • safety, abuse, rights

  • learning never stops!

    • use supports and strategies based on the communicator’s strengths, needs, likes, and interests; implementation strategies such as those mentioned on our AAC in School-Age resource page may still be useful

Resources to Explore

Articles, Books, and Documents

Materials

Self-Advocate Communication Profile template

Self-Advocate Communication Profile template

a hammer and a wrench

Other Resources

Useful Tips

  • Provide time, patience, and more time, and more patience! Intentionally create space in conversations and discussions for AAC users to be able to take a turn and be an active participant!

    • Communicating through an AAC system - even the most robust, best-fit system - is slow and hard.

  • Beware of ableism and infantilization!

    • Adult AAC users are adults and deserve to be treated as the adults they are.

    • Adult AAC users deserve the dignity of risk.

    • Adult AAC users deserve to be heard. They deserve to make decisions and direct their life.

  • Communication partners need training and ongoing support!

  • Focus on communication intent, not how the message is communicated.

  • Find your support networks!

    • AAC Users:

      • ISAAC PWUAAC Online Chats - The International Society for Augmentative and Alternative Communication (ISAAC) invites people who use AAC to meet online for informal chats. Check their website and/or their social media for dates and times.

      • Facebook groups:

      • Other:

        • Seattle Children’s Alyssa Burnett Adult Life Center offers virtual and in-person classes and outings for people 18 and older with developmental disabilities

        • [Skagit County, WA] Cascadia Clubhouse offers recreational activities for adults with developmental disabiltiies

    • Families / Caregivers / Support Staff:

      • AAC vendors and app developers have pages on various social media channels. Many also have Facebook groups that can be a good place to connect with a support network.

        • also look for social media accounts and/or Facebook groups related to specific diagnoses

        • and look for social media accounts of AAC users and/or parents of AAC users

    • Professionals:

Selected References: