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One of the biggest challenges minimally speaking individuals, including those who are autistic face is the prevalent misconception that speech is a measure of intellect. Speech is a complex motor function of the brain. Autistic people with limited speaking abilities may also experience atypical sensory processing and difficulty with initiating, inhibiting, and purposefully controlling movement. That is why they are unable to produce speech or why their speech is repetitive, scripted, echolalic, or otherwise limited for communication. All current, commonly used measures of intellectual function assume normal sensory and motor function and many assume fluent speech.  

Nonspeaking people are routinely assessed with standardized tests that do not always yield valid results, and therefore are at high risk of being misdiagnosed as having an intellectual disability. When people believe that difficulties with speech are a result of severe intellectual disability or their movements and behaviors are due to a lack of social understanding, they do not work to help them develop the sensory and motor skills necessary to use a robust form of augmentative and alternative communication (AAC). 

What can family members and medical professionals do to mitigate the challenges?

Everyone communicates. Family members and medical professionals should understand that communication is the foundation of patient care and is necessary for self-determination, and must therefore be a high priority for early intervention. Parents and caregivers should presume competence and expose children to rich experiences, books, information, and language. Avoid assumptions about potential or understanding based on diagnosis, appearance, behavior, or how someone communicates. The Office of Developmental Primary Care has a resource, Everybody Communicates: Toolkit for Accessing Communication Assessments, Funding, and Accommodations, that offers information for accessing communication evaluations and tools for effective communication for people with communication-related developmental disabilities. It is available in English, Spanish, and Chinese.  

Family members, medical providers, therapists, researchers, and others should listen to what people with speech-related disabilities are telling us about their minds and bodies. This is particularly important when it comes to research priorities and initiatives. By taking into account the experiences, needs, and perspectives of people with speech-related disabilities, researchers will be better able to target research that is relevant and useful for them.  

Family members should ask for communication and AAC assessments and should educate themselves so that they can assess the quality of the services they receive. Medical professionals should refer families and work to ensure expert referral resources are available in every community for both children and adults. There is a wide variety of ways in which autistic people communicate. Keep trying until you find something that works. The field of AAC is in its infancy. New technology and methods are rapidly expanding. Keep trying until you find a method that enables robust communication—not just basic requests. 

What can healthcare practitioners and others do to better communicate with minimally speaking patients?

Even when listening is complicated, we can develop better skills for honoring the individual perspective of every person with disabilities 

  • Ask your patients how they communicate best and accommodate it.  
  • Speak directly to your patient and give them all the information you typically give patients about their condition whether or not you know what they are understanding.  
  • Wait for a response.  
  • Practice good communication etiquette when interacting with non-traditional communicators.  
  • If a supporter is speaking on behalf of a nonspeaking or minimally speaking person, check the validity of their interpretation by saying, “How do you know?” and “Did you ask?”  
  • Finally, even during the Covid-19 pandemic, hospitals are required by good medical practice and the Americans with Disabilities Act to accommodate communication by permitting patients to have support people accompany them, and ensuring access to adaptive equipment and services.

Clarissa Kripke, MD, FAAFP, is the clinical professor of family and community medicine at the University of California San Francisco. She directs the Office of Developmental Primary Care whose mission is to build the capacity of the healthcare system to serve transition-age youth and adults with developmental disabilities. She is vice chair of CommunicationFIRST, the first self-advocate led organization to advocate for the full rights and inclusion of people for whom speech is not reliable communication.