For People with ALS, Social Media Can Be a Key Communication Tool to Maintain Relationships and Expand Networks

A study funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).

Amyotrophic lateral sclerosis (ALS) is a nervous system disorder that interferes with how the brain and spine transmit signals to muscles and causes loss of motor function including mobility and speech. People with ALS (pALS) may experience such significant speech impairments that they cannot rely on their natural speech to meet their communication needs in face-to-face interactions.

About 80 percent of all pALS use some form of augmentative and alternative communication (AAC), such as speech-generating devices. However, despite the numerous benefits of AAC, some pALS may find it too slow and challenging for face-to-face conversations. In addition to technology limitations, pALS who use AAC report that health restrictions, mobility limitations, negative societal attitudes, and architectural and transportation barriers may also limit their face-to-face interactions.

Social media may offer pALS a means to bypass some of these limitations, improving communications with family and friends and expanding their networks to new groups. One NIDILRR-funded study looked at how pALS who use AAC are tapping into social media to meet their communication needs.

Researchers at the NIDILRR-funded Rehabilitation Engineering Research Center on Augmentative and Alternative Communication (RERC on AAC) invited nine adults with ALS who use AAC and social media to participate in a focus group to share their experiences. All participants, four women and five men with ALS aged 35 to 76, used some form of high-tech speech-generating device or iPad with a communication application. Five of the participants used some form of alternative input device, such as a head mouse or eye-gaze device. They mostly used two forms of social media, Facebook and Twitter, and had used social media for an average of about five years.

Using an online discussion forum, participants discussed their experiences with social media. Specifically, participants discussed what kinds of social media they used and how they used it, their motivations for joining social media, advantages of social media as a communications tool, barriers to independent use, supports that help overcome these barriers, and recommendations for developers, policymakers, and other pALS.  Based on the discussions, researchers identified several themes:

  • Supporting connections: Participants said that social media increased access to information and made it easier to interact and engage with communication partners. It made it possible for participants to maintain relationships, reconnect with friends, and expand their personal networks.
  • Networks of support: Participants said that social media made it possible for them to find support from the pALS community, offer their own support for other pALS, raise awareness about the condition, and learn about ALS research.
  • Communication opportunities: Participants described how social media expanded their communication options beyond face-to-face conversations, increased interaction and reduced feelings of isolation, and increased engagement from their partners.
  • Barriers to using social media: Participants described physical limitations, such as loss of motor function making it difficult to type; the emotional toll of dealing with the limitations and isolation caused by ALS; and difficulty in getting AAC devices to interact with computers.
  • Recommendations: Participants recommended that AAC developers focus on improvements to facilitate communication, like reducing the size of the hardware, increasing its usability, and creating more accessible software features. They recommended that policymakers, including insurance companies, make changes to support AAC use such as simplifying the application and approval process. Participants encouraged other pALS to sign up and recommended searching for ALS and motor neuron disease communities to join.

The results of this study demonstrate that social media could play a significant part in maximizing the communication and participation of pALS by increasing their communication opportunities, maximizing their connections with others, and making it easier to access support networks. These results match many findings of similar studies that have investigated social media use by individuals with developmental disabilities. However, the authors also noted a difference in the use of social media between pALS and individuals with developmental disabilities. pALS used social media to reach out to and establish new relationships, especially with individuals who are experiencing similar life circumstances , where users with developmental disabilities used social media to interact mostly with smaller networks of family and friends. On the basis of the study results, the researchers proposed three potential requirements to ensure that pALS have the option to use social media to ease communication:

  • pALS should have information on the wide range of social media options available and their potential uses as well as the information and support networks available for pALS;
  • pALS should have access to appropriate technologies to support social media access; and
  • pALS should have knowledge, judgment, and skills to interact effectively and attain communication competence across multiple communication channels, including social media.

To meet these goals, pALS may need support from speech-language pathologists (SLPs) and AAC specialists to learn how to use social media effectively using their AAC systems and how to share media such as videos, emojis, web links, or photographs. The authors suggested that SLPs and AAC teams may want to develop competencies in these areas to support pALS as they explore social media.

The authors also suggested that current technologies may create barriers to using modern communication channels, including social media use. A multidisciplinary approach to technology design that includes individuals who use AAC is needed to address current technological barriers, influence future innovations, and improve access to social media. The authors noted that it is especially critical that developers consider the impact of changing physical status and develop designs that accommodate changing needs and skills. The authors also pointed to policy barriers in the United States that limit access to technologies that support social media use. They suggested that strong advocacy is needed to ensure that funding agencies support access by pALS, and others with complex communication needs, to the wide range of communication tools required to participate successfully in various contexts.

This study focused on pALS who use AAC successfully to navigate social media for communication. The authors recommended that future studies should also include individuals with other diagnoses who require AAC, including those who are not successfully accessing social media to understand their perspectives and what may be getting in the way of their social media experience. In addition, researchers may want to investigate the visual cognitive and motor processing demands of different technology displays, such as eye-tracking research technologies, and their impact on ease of engagement with social media, with particular attention to techniques to accommodate the loss of skills experienced by pALS.

To learn more:

The RERC on AAC offers a library of webcasts on a variety of topics in AAC, including presentations on research and clinical applications, as well as consumer perspectives:

Check out the wide range of AAC products indexed in the AbleData database:

The ALS Association lists certified centers and clinics, including SLPs, plus support groups and local chapters:

To learn more about this study:

Caron, J., and Light, J. (2015) My world has expanded, even though I’m stuck at home”: Experiences of individuals with amyotrophic lateral sclerosis who use augmentative and alternative communication and social media. American Journal of Speech-Language Pathology, 24, 680-695. This article is available from the NARIC collection under accession number J73049.

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