What the neurodiversity affirming movement's taught me about stammering

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Joe

Joe Dombro, a US-based speech-language pathologist (what we call a speech & language therapist) tells us about the shifting attitudes towards autism, and its possible lessons for the stammering community.

As a speech-language pathologist who stutters, or stammers, one of the many difficult things I have to consider every day is the delicate balance between research-based therapy and social justice. I am well aware of the intense negative feelings and anxiety that stammerers carry. I believe that considering a person's feelings and attitude regarding their disability or difference is the most important aspect of speech therapy for a stammerer. But while it may seem strange, I think it's usually best to encourage a stammerer to speak freely without hiding their 'choppy' speech. 

A very similar phenomenon is happening in the world of speech therapy when it comes to treating autism. Many people refer to this as the 'neurodiversity affirming movement', and it's one of the most polarising topics in the field today. While there are many forms of neurodiversity, autism spectrum disorder is at the forefront of this movement. It's important to understand that some people's brains are wired differently and that it's natural for some to communicate in a manner not considered 'typical'. The sudden shift from 'fixing' autism to celebrating and accepting these differences has been a tough pill to swallow for some. This is especially true for therapists that have been taught to write goals encouraging autistic people to fit a certain mould. 

The sudden shift from 'fixing' autism to celebrating and accepting these differences has been a tough pill to swallow for some.

I've had my share of stammering cases in the school setting, but when I started to learn more about the neurodiversity movement, it inspired me to become the speech therapist for the autism programme at my school. There, I found that stammering and autism share many of the same characteristics. I believe that the neurodiversity affirming movement can teach us a lot about stammering, in the following ways.

1. Masking

In the United States, if students need extra support they may have an 'Individualised Education Program'. Part of this includes a list of goals for each student set by special education teachers and therapists. Often, far too many of these goals for autistic students revolve around social skills that 'typical' people demonstrate. Maintaining eye contact, staying on topic during a conversation, and reducing stimming behaviours (repetitive movements or vocalisations that are meant to regulate their emotions and manage anxiety) are just a few examples of goals that I see. Goals like this cause autistic students to mask their behaviours to fit in with their peers. 

The truth is, we shouldn't force an autistic person to engage in social behaviours that make them uncomfortable. Autistic people prefer to work on more functional skills like requesting help, communicating wants and needs, and describing boundaries. Similarly, I have seen too many 'fluency-enhancing' stammering goals that force stammerers to sound like someone they are not. 'Stretching' is the most common strategy to reduce stammering. This is done by intentionally slowing down speech and prolonging certain sounds in a word. While this can reduce stammering, the speaking voice often sounds robotic and inauthentic. 

Whether masking occurs in autistic people or stammerers, the result is both mentally taxing and difficult to maintain. I can't speak for everyone, but in my experience most stammerers prefer their authentic speaking voice, as choppy as it may sound. The best approach is to discuss how to take control of their moments of stammering, while reducing physical tension and anxiety. I think it's always best to encourage the student or client to embrace their disability.

2. Identity-first language

Using 'person-first' language, such as 'person with autism' or 'person who stutters', appears to be considerate on the face of it. It's an acknowledgement that there is more to the person than their disability or difference. However, many people are proud of their disability and find that their identity lies within their differences. When it comes to autism, many studies¹ would show that the identity-first term 'autistic' is preferred. I am not aware of any similar studies regarding stammering, but a case could be made that their circumstances are similar. 

...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.

As burdensome as stammering may seem to some, many people use their experience of it to build a better life for themselves and others. Sometimes, this means studying to become a speech-language pathologist in order to treat stammering. Others may organise support groups for kids and adults alike. Whatever the case may be, many people feel that stammering 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 stammerer: ask them if they want to be referred to as a stammerer or person who stammers.

3. Family counselling

Perhaps the most important aspect of treating autism and stammering is to approach the family or individual with reasonable expectations. Many believe that speech therapy is a means to 'fix' autism or stammering. 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 will lead to a better quality of life.

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 stammering community has also experienced more acceptance, I hope that the neurodiversity affirming movement reaches even more areas of stammering that are often overlooked.

Read more Your Voice articles. 

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Notes

¹ For example, Buijsman, Begeer & Scheeran (2022), 'Autistic person' or 'person with autism'? Person-first language preference in Dutch adults with autism and parents, Autism, 27(3):788–795.