"Möbius Syndrome and other conditions that can be socially challenging are often seen as problems which primarily involve the people with the syndrome. But the reactions they get from other people in social situations are equally important, as they can inhibit interaction and rapport," says John Michael. (Credit: iStockphoto)

communication

For facial paralysis, course adds nuance to chats

A course on communication strategies—gestures, body posture, and prosody—can help people with a rare facial paralysis improve interaction and rapport with others.

The paralysis of Möbius Syndrome leaves the face expressionless, which makes it difficult for people with Möbius to express emotions or indicate that they understand a conversation partner’s information. This severely inhibits interaction and rapport—creating a challenge not only for those with Möbius but also for their conversation partners who become insecure and nervous.

Researchers based at Aarhus University’s Interacting Minds Centre have completed a study involving five Danish teenagers with Möbius Syndrome to see whether it is possible to teach persons who lack facial expressivity to use alternative communication strategies.

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“Our research shows that the teenagers significantly improved rapport and interaction with their conversation partners without Möbius after just two days’ workshop in compensatory communication strategies,” says postdoctoral researcher John Michael of University of Copenhagen’s Center for Subjectivity Research.

“And interestingly, it was not only the teenagers with Möbius who changed their behavior; the non-Möbius interlocutors became much more expressive with both gestures and voices.”

Kathleen Bogart
Professor Kathleen Bogart of Oregon State University is a leading expert in facial movement disorders and coauthor of this paper. She has Möbius Syndrome. (Credit: U. Copenhagen)

Möbius Syndrome only occurs in 2 to 20 births per million, so it is an extremely rare condition, which is why the researchers only had five Danish teenagers to test their hypothesis on. But their results can nevertheless say something general about people who find social interaction difficult because of disfigurements or paralysis.

“The workshop we conducted for the five teenagers was adapted from one that the English charity organization Changing Faces conducts for people with severe facial burns or disfigurements. That it proved so effective, not only for the five boys with Möbius, but also for their interlocutors, says something important about social interaction,” says John Michael.

“Möbius Syndrome and other conditions that can be socially challenging are often seen as problems which primarily involve the people with the syndrome. But the reactions they get from other people in social situations are equally important, as they can inhibit interaction and rapport,” he says.

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“This insight may lead to new forms of therapy and treatment which address other people than just those affected by Möbius, i.e. the ‘normal healthy individuals’ who encounter and interact with people with Möbius. And the same may be true with respect to other cases, such as autism for example.”

As Möbius is a rare and understudied syndrome, and the pool of participants small, the researchers behind the present study hope that their results will be replicated and extended by other researchers.

“As always, more studies are needed,” says Michael. “We will seek to replicate the findings with new participants, and observe the long-term effects of more prolonged training and of different communicative strategies. But these first findings are highly promising, and it is especially satisfying to see that the basic research we are doing has many practical applications, which can make a real difference in some people’s lives.”

Michael is the lead author of a paper in the journal Frontiers in Endovascular and Interventional Neurology.

Source: University of Copenhagen

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