Because communication is integral to people’s ability to participate in their communities, the National Joint Committee for the Communication Needs of Persons with Severe Disabilities identifies it as a right. For autistic children and adults with significant communication needs who use less familiar forms of communication, such as sign language, gestures, and voice output communication aids, exercising that right to communicate may be challenging, if not impossible, be it at home, at school, in the workplace, or elsewhere.
Today, the trend is to use a strengths-based approach to improve autistic individuals’ ability to communicate and look holistically at the context, including communication partners and the communicative environment.
Communication at Home
Home is probably the most familiar environment for autistic children and adults, and as such, offers certain advantages. Family members are likely more familiar with how their autistic family member communicates and have learned the best modalities and strategies to use in conversation with them. However, autistic children and adults with significant communication needs often benefit from tools like augmentative and alternative communication (AAC) systems or visual supports, and there may be disparities in the materials, training, services, and supports that families have access to. Additionally, when autistic individuals engage with extended family, friends, or neighbors who are less familiar with their communication style, people may look to an immediate family member as an interpreter, creating a different communication dynamic.
Communication at School
At school, special education teachers and speech-language pathologists are educated and trained in how to communicate with and support children with a variety of communication needs. However, not all school-based personnel have that expertise and training and not all classrooms are set up to facilitate different kinds of communication. For example, special education classrooms are likely to have communication supports, but general education classrooms or specialized classrooms, like art and music classrooms or gyms where physical education classes take place, are not likely to be adapted to fully support students with significant communication needs.
When students with significant communication needs are in those places, they may not be able to communicate with their peers, missing out on interacting with their teachers and their classmates. When communication breakdowns arise, people may assume the autistic student cannot be in that environment instead of adapting the environment to support effective communication and/or teaching peers and educators how to communicate effectively with autistic students who have communication needs.
Communication in the Community
Autistic people with significant communication needs of all ages must be able to communicate while they are in their neighborhoods and other community spaces, like stores, libraries, festivals, or sports games. Community settings often lack the accommodations and adaptations that would facilitate that communication. As a result, others may miss attempts by autistic individuals to communicate, misunderstand them, or disregard them entirely. This can lead to marginalization, exclusion, and isolation.
Changing Expectations and Environments
What can we, as community advocates, do to implement changes that would better support communication between autistic people and family members, teachers, peers, and those in their communities?
- Seek out the voices and stories of non-speaking autistic self-advocates. It is critical to listen to the lived experiences of autistic people in order to understand their successes and challenges navigating a world that is often not designed to meet their communicative needs. Read studies that highlight the perspectives of non-speaking autistic adults, like this one. Many non-speaking self-advocates have shared and continue to share their personal experiences about communicating in a different way than much of the world with blogs, Twitter accounts, videos, and more (look up endever* corbin, Saoirse Tilton, and Hari Srinivasan as a starting point).
- Build communities that honor and value all people. Individuals with significant communication needs and/or differences (or any other challenge) are often marginalized, and are therefore invisible to much of the world. In schools, try using evidence-based practices such as peer networks, which can connect students with and without disabilities, or other peer-mediated interventions. Be intentional about creating authentic opportunities for neurotypical peers to interact with their neurodiverse classmates. In the community, find places that value and promote neurodiversity. If you are in a location that does not have those spaces, find other like-minded individuals to create that space. The Neurodiversity Network provides tips related to building neurodiverse communities.
- Educate school personnel, peers, and community members. People may avoid interacting with individuals who communicate using less conventional communication modalities — perhaps because they are uncertain of how to interact. For parents, friends, educators, and other people who regularly engage with autistic children and adults with significant communication needs and/or differences, it is important to be an advocate and ally, and empower the autistic person to be a self-advocate if they are not already. You can do this by providing information about how an individual best communicates through strategies, peer trainings, or a “Get to know ____” sheet that you co-create with the autistic person. Education can also be targeted more broadly, and can include things like informational sheets about some of the communication challenges for autistic children with significant communication needs or trainings that share information about communication and social characteristics of autistic children.
- Set up spaces that support people with diverse communication styles and needs. With the growing emphasis on universal design for learning and neurodiversity, there are models of community spaces that are set up to support a diverse population of communicators. Consider tackling one or two spaces in your community first – like an accessible playground, a kids’ museum, or a restaurant. Find and follow groups on the web or on Facebook to see examples of what is going on in other communities, for example, the Point and Play communication supports for playgrounds highlighted by Autism Level UP.
Although we are often quick to focus on the communicative deficits of autistic individuals with significant communication needs and differences, it is critical to recognize communicative strengths and desires, as well as look for problems and gaps in the communicative environment that are negatively impacting interactions. Certainly it is important to support autistic people in expanding their communication skills, but it is also important to make changes to the environment and help the community learn to engage with people with a variety of communication characteristics and needs.
Jessica Steinbrenner, PhD, CCC-SLP, is an associate professor at the University of North Carolina at Chapel Hill and a certified speech-language pathologist. She has worked with autistic children and their families for about 20 years as a part of interdisciplinary teams. Her research has primarily focused on working in school settings to help educators better support autistic students and implement evidence-based practices in real world settings. She is especially interested in strategies that support communication, peer interactions, and engagement.