Prevalence
Approximately 10% of people have speech, language, or voice disabilities (communication disabilities).1 They may rely on American Sign Language (ASL) or other modes of communication through the use of technology. Some children without hearing issues but who have developmental disabilities may benefit from using ASL which reduces their frustration and challenging behaviors, and some later became verbal.
Stigma
Unfortunately, difficulties with speaking may lead to underestimating a person. Sometimes, others inappropriately speak louder or slower, talk to them like a child, or even worse, ignore them altogether, and instead speak to a family member or other person who is with them. This is despite the fact that the ability to speak has little to do with intelligence or ability.
Options
Some options may include the use of ASL or other communication devices. These can include AAC – augmentative and alternative communication devices. These can be picture or symbol boards, as well as synthesized speech using a computer program (text to speech). For an explanation of AAC to families and also the latest research on AAC devices, see Resources below.
Role Models
Some excellent role models include people with disabilities who were or are able to communicate differently and express their thoughts and talents. Perhaps the best known was physicist Stephen Hawking, a brilliant scientist. Several years ago “Carly’s Voice”, book/blog presented the story of Carly Fleischmann who has autism, nonverbal, and explained to others what it is like to be on the spectrum. More recently, Samuel Habib who uses AAC hosted My Disability Roadmap2 with other disability advocates, and his film just won an Emmy!
AAC etiquette
On https://spokenaac.com, their blog gives tips on appropriate communication with AAC users, which can be used for anyone with communication challenges. These include:
- Give them time to answer
- Avoid interrupting them
- Address the individual directly
- Maintain eye contact
- Respect personal space and equipment
- Treat them chronologically appropriately
- Speak in a normal tone and speed
Person centered
It is essential that any communication technique used by a person with a disability is person-centered. This means that the individual is expressing their own thoughts in their own way. No one is speaking “for” them or “suggesting” what they mean. For more on person centered communication, see EP’s February 2022 issue at www.epmagazine.com.
Speak Up : Augmentative & Alternative Communication Resources
ASHA
(American Speech-Hearing-Language Association)
Augmentative and Alternative Communication
www.asha.org/practice-portal/professional-issues/augmentative-and-alternative-communication
Cincinnati Children’s Hospital
Augmentative and Alternative Communication: Explanation for families
www.cincinnatichildrens.org/service/a/aaron-perlman-center/assistive-technology/communication
NIH (National Institutes of Health)
Augmentative and Alternative Communication (AAC) Advances:
A Review of Configurations for Individuals with a Speech Disability
www.ncbi.nlm.nih.gov/pmc/articles/PMC6515262/
Spoken Inc.
Proper AAC Etiquette: How to Communicate Respectfully with AAC Users
https://spokenaac.com/blog/proper-aac-etiquette
ABOUT THE AUTHOR:
Lauren Agoratus, M.A. is the NJ Coordinator for Family Voices, NJ Regional Coordinator for the Family-to-Family Health Information Center, and Product Development Coordinator for RAISE (Resources for Advocacy, Independence, Self-Determination, and Employment). She also serves as NJ representative for the Caregiver Community Action Network as a volunteer. Nationally, Lauren has served on the Center for Dignity in Healthcare for People with Disabilities transplant committee (antidiscrimination), Center for Health Care Strategies Medicaid Workgroup on Family Engagement, Family Advisor for Children & Youth with Special Health Care Needs National Research Network, National Quality Forum-Pediatric Measures Steering Committee, and Population Health for Children with Medical Complexity Project-UCLA. She has written blogs and articles nationally, including publications in two academic journals (https://pubmed.ncbi.nlm.nih.gov/?term=agoratus+l). Lauren was named a Hero Advocate by Exceptional Parent Magazine (www.epmagazine.com) Archives June 2022.
Read the article here.