Giving Non-Speaking Autistic Individuals a Voice
Story adapted from MSU Today
Q&A with physiology senior Mariam Sayed
Michigan State University is one of the top 100 research universities in the world and a member of the prestigious Association of American Universities, widely regarded as among the top research-intensive institutions in North America. The following story highlights one of the many examples of MSU’s research excellence and innovation.
Mariam Sayed is a double major in physiology in the College of Natural Science and French in the College of Arts and Letters at MSU. She is passionate about using her skills to help underserved francophone (French-speaking) populations. Her current research helps autistic individuals communicate. Sayed is a Dean’s research scholar, an MSU research ambassador and member of the Honors College. She recently presented at Winter University in Florida which is an event for donors and alumni to learn more about MSU students' experiences.
Q: What do you want people to know about the autistic population?
A: Autism falls under a spectrum of identities in which different neurocognitive (cognitive brain function) pathways can be displayed through an individual’s repetitive behaviors and sometimes are presented as causing challenges with speech. April is Autism Acceptance Month, which makes it a most appropriate time to discuss the diversity of the autistic population.
What the general population doesn’t understand about autistic individuals is that every single autistic individual is affected so differently and uniquely. There is a phrase, “If you have met an autistic person, then you have only met one autistic person.” People often make the assumption that because autistic individuals do not function or communicate in a way that is socially acceptable, they are inherently disabled or undesirable beings. However, a lack in ability to communicate doesn’t translate to a lack of intelligence.
Q: How is your research helping autistic individuals find their voice?
A: One third of the autistic population has a hindrance in their ability to speak. Right now, autistic individuals use a standardized augmentative and alternative communication, or AAC, device to interact with the world around them. They use the device to communicate with their loved ones as well as at work, school, in medical/clinical situations and in social settings. Currently, the use of an AAC also requires the physical presence of a human assistant to help the autistic individual with navigating the device.
The device is one-size-fits-all. Because every autistic individual is affected so differently, we are trying to improve those devices to make them more tailored to the user and ameliorate their function to fit the unique needs of the autistic individual.
One of the devices we are studying is a head-mounted tracker device that eliminates the need for an assistant with an AAC device, giving autistic individuals complete agency in communication. To use this device, autistic individuals move their eyes to select the letters they want to type or say and those words will be stated out loud by the AAC. Research has shown that this device allows autistic individuals to have increased speed, fluency and accuracy in their speech, which has the potential to reduce stereotypes around their intellectual capabilities.
Q: How do autistic individuals want to be heard and recognized?
A: Our most recent study looked at a body of self-narratives from successful autistic individuals. They went against all odds to become established literary scholars, authors, poets, directors and comedians, despite the struggles they faced as autistic individuals who did not have their needs met or even recognized by the medical or clinical world, or even society.
We took their self-narratives and coded all the phrases they used about their own experience into five categories. The number one sentiment expressed across all narratives was a desire for change in both the way that autistic individuals were treated by society and in the limited quantity of social, academic and employment opportunities available to them. We want to take those narratives and elevate autistic individuals’ voices and concerns to a society that is inclusive and works toward better understanding the diversity of autism. This idea falls under the umbrella of the neurodiversity movement, which includes autism, schizophrenia and epilepsy. Ultimately, the movement aims to replace the medical model of disability, which pathologizes individuals with different neurocognitive functions, with the social model of disability, which introduces them as profiles of diversity, in the same way that we do with race, religion and gender.
Q: How can “identity-first” language be used as a better way to address people?
A: The first step to creating an inclusive society is remaining cognizant of the profound effect that language used to describe a specific group of people can have on them. The way we speak to and about these groups has a reciprocal effect on the way we perceive them and the way they view others. We are studying “identity-first” language as a replacement to “person-first” language.
Historically, in clinical situations, individuals have been addressed as people first, and then have attached any identities to the second half of the introduction. The philosophy behind this was that you are a person — a member of humanity — before you are anything else, which promotes commonality. However, our research shows that there is a higher stigma using this type of homogeneous language to describe a heterogeneous population by describing someone as, “A person with autism or a person who has autism” (person-first) versus “an autistic person” (identity-first). Saying a person “with autism” indicates that they are inherently different from everyone else and do not fall under the socially acceptable category of normal. In the same way that we describe a person’s race, we should recognize an autistic individual’s identity as an integral part of who they are. You wouldn’t say, “A person with African Americanness,” rather they would be described as “an African American person.”
One of the other things we are doing is focusing on the way autistic individuals want to be addressed and having them be proud of their identity. If you are autistic, you likely identify as autistic. The same way we identify as an Asian American or African American. What our research found is that their ability to identify as autistic, enhanced by others referring to them as autistic using identity-first language, had a positive impact on them, leading to self-confidence and helping them feel like they belong in society.
Q: Why did you choose MSU?
A: As someone majoring in physiology and French, with multifaceted interests, I looked to MSU for providing me the flexibility I needed in pursuing each one of my passions wholeheartedly, without interruption. When I looked at other universities, I was locked into their curriculum, and many others didn’t see the benefit of pursuing two vastly different career paths. MSU, on the other hand, never saw my diverging interests as a hindrance; in fact, MSU’s faculty and the Honors College encouraged me to become a dynamic student who was well-versed in not only the biomedical sciences, but also in the social sciences, by discovering and understanding complex global and ethical issues, minority populations and the humanistic aspect of medicine, as well as culture and language in the francosphere, which has paved a way for me to pursue a career in medicine and academia as a culturally sensitive and informed physician and educator.