The Autistic Self Advocacy Network appreciates the opportunity to submit comments for the nonspeaking RFI by the National Institute on Deafness and Other Communication Disorders (NIDCD). Our comment looks to answer the four categories presented by NIDCD in the RFI. The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for autistic people. ASAN is a national grassroots disability rights organization for the autistic community. We fight for disability rights. We work to make sure autistic people are included in policy-making, so that laws and policies meet our community’s needs. We work to support all forms of self-advocacy and to change the way people think about autism. Our members and supporters include autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators, and friends. ASAN works to make our society more inclusive for autistic people, including nonspeaking autistic people.
1. The biggest communication needs for minimally verbal/non-speaking people
Communication is a human right. People with speech-related disabilities, including nonspeaking autistic people, need immediate access to robust Augmentative and Alternative Communication (AAC.) As the largest self-advocacy organization representing the autistic community, including nonspeaking autistics, ASAN witnesses routine and widespread deprivation of this basic human rights. Nonspeaking people often go many years without any access to AAC; when AAC is provided, it is often extremely limited, cannot be used across multiple communicative functions, and fails to support language development. Frequently, AAC systems are provided without any meaningful support for the nonspeaking person or their family and support system to learn to use the system or expand communication. Routinely, nonspeaking autistic people are expected to “prove” their interest in and capacity for communication, language, and social interaction under these insulting and inaccessible conditions before they will be granted access to robust communication. This approach is obviously ineffective; ASAN believes it is also a violation of the individual’s rights.
Instead, AAC should be considered as the first option when someone has a communication disability. This includes access to AAC for people who can speak but cannot rely on speech for their only communication. Early Intervention providers should be comfortable matching toddlers with robust AAC and supporting families in this process. Every time a nonspeaking person interacts with the service system, from Early Intervention through adult services, the service provider should have as a first priority ensuring that they have access to effective communication. AAC and related communication supports should be covered equitably by every payer; Medicaid, Medicare, private insurance, public schools, vocational rehabilitation, and any other applicable party. There should never be a financial barrier to communication.
ASAN emphasizes that AAC must be robust and enable effective communication as defined by the Americans with Disabilities Act. By “robust” we mean an AAC system that:
- Contains thousands, not dozens, of words
- Is language-based
- Supports language development and the full use of syntax and grammar
- Enables a person to communicate across the full range of communicative functions–not just requesting and labeling
- Is accessible to the person and adapted to their specific accessibility needs
- Matches the individual’s communication preferences
In other words, “robust” AAC enables the person to express anything they might be thinking or feeling. The vast majority of nonspeaking autistic people, including those who have some access to AAC, do not have access to robust AAC. ASAN believes this is a human rights crisis.
2. The greatest roadblocks to supporting and improving communication for minimally verbal/non-speaking people
Furthermore, even once an individual has access to robust AAC, they are rarely given sufficient access to the support necessary to learn to use the system. AAC systems are complex, and even in the absence of other language disabilities or trauma, overcoming a history of communication deprivation takes time. AAC users often need years of dedicated support across settings (school, home, the broader community, etc) before they are able to fluently use their devices to fully express themselves. This support is rarely provided. Speech Language Pathologists often do not have sufficient training in supporting AAC use; even when an individual has access to a trained SLP, they are often only served for an hour or less a week. Others in their life–teachers, paraprofessionals, direct support workers, family members, etc–are often not given information about best practices for supporting AAC users. It takes thousands of hours and several years with constant support for humans without speech-related disabilities to learn to speak; AAC users are routinely given a small fraction of that time and then deemed to have “failed” AAC.
Nonspeaking people deserve the presumption of competence, which includes the presumption of the ability to learn when given the right support. They deserve effective support to communicate, across settings, for as long as it takes–even if that means their entire life. Communication is a human right.
Nonspeaking people also urgently need access to literacy instruction rooted in the science of reading, as well as access to inclusive education. Every AAC system is limited if the user does not have a basic ability to read and spell; literacy instruction is key to ensuring truly robust, effective communication. Nonspeaking children are routinely segregated in schools and denied access to the general curriculum. There is an urgent need for teacher education and system change to ensure that every student, including nonspeaking students with the most complex disabilities, has access to literacy instruction, the general curriculum, and effective communication. These needs go hand-in-hand.
ASAN stresses that these principles apply to all people with speech-related disabilities. Many nonspeaking people, particularly nonspeaking autistic people, are presumed to have intellectual disabilities and additional language processing disabilities. But it is not possible to truly assess for these conditions if the person does not have fluent access to robust communication. ASAN acknowledges that some nonspeaking people do have intellectual disability and/or language processing disabilities, as do some autistic people who communicate effectively with speech. Nonetheless, we urge that these labels not be assigned until they can truly be assessed. Furthermore, we know that people with intellectual disabilities or language disabilities are also deserving of, and benefit from, robust AAC, accessible literacy instruction, inclusive education, high expectations, and the presumption of competence. Communication is a human right.
3. The highest priority research targets to advance communication for minimally verbal/non-speaking individuals
The highest priority research should focus on the quality of life for people with speech disabilities, this includes research on if access to robust AAC impacts the quality of life for people with speech disabilities. There also needs to be more research focused on effective systems transformation. It is important to understand the most effective ways for schools, school districts, states, service agencies, and other stakeholders to change how they offer and provide AAC and alternative communication methods, as well as how they provide support for AAC users. There should be research focused on the scaling of different supports, especially to nonprofessionals and intentional matching of the right supports to different people. Research needs to prioritize matching the right supports with the right people. This means research to understand why some people do not use AAC or prefer alternative communication methods and also providing better access to assistive technology lending libraries and trials of different methods of communication and communication devices or applications.
Additionally, there should be an increase in research focused on supporting AAC users in using the whole range of communicative functions to communicate. Another area of research that should be prioritized is the impact of access to effective communication supports on individual outcomes like self-determination, education, community inclusion, mental and physical health, reduction in self-injurious or aggressive behaviors, ability to report abuse, etc. particularly for people with the most significant disabilities.
There needs to be research focused on getting accurate demographic information on the number of people with speech disabilities in the US, how many people with speech disabilities actually actually receive AAC services, and how many people with speech disabilities are not receiving AAC services when they would like to have access to them. Research should prioritize understanding the disparities that exist in AAC service provisions between different age groups, different races/ethnicities, groups who speak different language(s) at home, and provisions of special education and disability services. There should be more research into affordable solutions to provide access to robust AAC that meets the needs of people with speech disabilities when they or their families have very low income or are un(der)insured. There should also be research focused on what features AAC users want or do not want in their AAC systems, with emphasis on how AAC users feel about incorporating machine learning into their AAC systems.
4. The best ways to increase partnerships between researchers and minimally verbal/non-speaking people to guide research projects
There must be community-based participatory research (CBPR) and research led by AAC users and people with speech disabilities. AAC users and people with speech disabilities must be included on research teams and study advisory boards. There should also be multiple accessible pathways for people with speech disabilities to get involved in research, both now and in the future. One way to accomplish the goal of increasing the number of accessible pathways for people with speech disabilities to be involved in research is to have requirements for research projects to include people with speech disabilities as part of the core research team in order to get government funding. An additional requirement to receive federal funding should require research projects to recruit and train people with speech disabilities in research skills, these trainees could be students at universities or community members.
There needs to be more effective AAC mentorship led by AAC users. This mentorship should be for both AAC users and professionals, communication partners, and family members. These mentorship programs must include more collaboration with organizations led by people with speech disabilities and AAC users, like CommunicationFIRST. One resource that is underutilized by the research and professional communities is the Facebook group “Ask Me, I’m An AAC User!” This group provides answers to a wide variety of questions about AAC use from various stakeholder groups. This informal resource exists because there is currently no other adequate resource that is training professionals, communication partners, and family members on how to support AAC users.
There should be funding specifically allocated to CBPR. There should also be funding to support foundational work and grants, the implementation of accommodations, and Easy Read development. There needs to be better standards on what is, and is not, acceptable in terms of AAC practice. These standards need to be developed and defined by AAC users. Community-based participatory research must be a priority for research projects.
We again thank the NIDCD for inviting interested stakeholders to comment on the experience of nonspeaking people, including nonspeaking autistic people. For more information on ASAN and the autistic community’s research priorities, please contact AJ Link, Policy Analyst, at firstname.lastname@example.org.