by Guest Blogger, Joe Dombro
As a speech-language pathologist, one of the many difficult things about treatment is the delicate balance between evidence-based practice and social justice. Effective intervention practices are fundamental to our field, but considering a person’s personal desires and general attitude regarding their disability is just as vital to their success.
The Neurodiversity Movement
The obvious example of looking at the lived experiences of clients and students we work with is the neurodiversity affirming movement. While there are many forms of neurodiversity, autism spectrum disorder seems to be at the forefront of this movement. Autistic people have been fighting for more affirming care for over 25 years, but this movement has only reached the speech therapy world recently. For many speech-language pathologists, it can be very difficult to accept a new approach after so many years of writing goals that encourage autistic people to fit a certain mold. Because of this, the neurodiversity affirming movement has been very polarizing, as many service providers have vastly different opinions on how to treat neurodiverse students. The sudden shift from “fixing” autism to celebrating and accepting communicative differences has been a tough pill to swallow.
I first learned about neurodiversity affirming care in graduate school. One of my professors (a Board-Certified Specialist in Stuttering, Cluttering, & Fluency) Patty Walton, stressed the importance of considering the thoughts and feelings of stutterers as a primary form of care. In her stuttering course, I learned about an extremely valuable tool created by speech-language pathologists at Stuttering Therapy Resources, the Overall Assessment of the Speaker’s Experience of Stuttering (OASES). It was the first time I saw a standardized assessment that measured the impact that stuttering had on an individual rather than the severity of their primary stuttering behaviors.
Implications of the Neurodiversity Movement for Stuttering
Whether it’s stuttering or autism, the neurodiversity affirming approach teaches us that it’s acceptable for people to communicate in a variety of ways. I believe that the neurodiversity affirming movement has many implications for stuttering that should be considered.
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Masking
I have seen far too many goals for autistic people that revolve around social skills that “typical” people demonstrate. Eye contact, conversational topic maintenance, and reduction of stimming behaviors are just a few examples of goals that cause autistic students to mask, or pretend that they are neurotypical. Likewise, there are far too many “fluency-enhancing” stuttering goals that force stutterers to sound like someone they are not. Stretching is the most common strategy to eliminate primary stuttering behaviors (part-word repetitions, prolongations, and blocks). This is done by intentionally slowing down speech and prolonging certain syllables in a word. While this does reduce stuttering in some structured settings, the speaking voice often sounds robotic and inauthentic. Whether masking occurs in autistic people or stutterers, the result is both anxiety-inducing and difficult to maintain. A lot of autistic people prefer to work on more functional skills, like describing boundaries and communicating their wants and needs. Similarly, most stutterers prefer an authentic speaking voice while working on ways to reduce tension and anxiety. In both cases, I believe it’s best to encourage the student or client to embrace their disability.
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Identity-First Language
Using “person-first” language (such as “person with autism” or “person who stutters”) when referring to our students or clients appears to be considerate on its face. It’s an acknowledgement that there is more to the person than their disability. However, not only does person-first language minimize the impact that a disability has on a person, many people are proud of their disability and find that their identity lies within their differences. When it comes to autism, many studies would show that the term “autistic” is preferred by most autistic people. I am not aware of any similar studies regarding stuttering, but a case could be made that their circumstances are similar. As burdensome as stuttering may be, many people use their experience of stuttering to build a better life for themselves and others. Sometimes, this means studying to become a speech-language pathologist in order to treat stuttering. Others may organize support groups for kids and adults alike. Whatever the case may be, many people feel that stuttering is a prideful part of their existence, and shouldn’t be thought of as “secondary” to the person. My advice to anyone who knows or works with a stutterer: Ask them if they want to be referred to as a “stutterer” or “person who stutters.”
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Prognosis and Family Counseling
Perhaps the most important aspect of treating autism and stuttering is to approach the family or individual with reasonable expectations. Many individuals or families believe that speech therapy is a means to “fix” autism or stuttering. In reality, both conditions will remain with the person in some manner throughout their entire life. We owe it to families to be honest about this and explain that supporting autonomy and management of undesirable tension or anxiety is the best prognostic indicator for both conditions.
Summary
I believe that the neurodiversity affirming movement has been greatly beneficial to the autistic community in recent years. One of the biggest shifts I have noticed is that teachers and therapists focus more on the unique strengths that autistic students possess, rather than seeing autism as a disease that needs to be cured. While the stuttering community has also experienced more acceptance, I hope that the neurodiversity affirming movement reaches even more areas of stuttering therapy practices, and societal expectations that are often overlooked.
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Joe Dombro, M.A., CCC-SLP, is a public school Speech-Language Pathologist in Colorado. We appreciate his desire to share his perspective on this topic.
