Perspective-taking – the cognitive ‘deficit’ in autism:
Professionals have characterized autistics as having impaired Theory of Mind – the ability to imagine the feelings and thoughts of others in order to comprehend and predict their behavior (Baron-Cohen, 1997). It is also called “perspective taking”, and can explain to neurotypical people why an autistic does not provide relevant background information when telling a story, does not understand sarcasm, does not provide nonverbal cues to let the other know they do not understand, does not repair communication when it breaks down, and appears not to have empathy.
A well-known demonstration of lacking perspective-taking skills among autistics is the Sally-Anne Test (Baron-Cohen, Leslie, Frith, 1985). Children were presented with a skit with doll characters, Sally and Anne. Sally hides a marble in a basket, then leaves the room. While she is gone, Anne takes the marble out of Sally’s basket and puts it in a box. Sally returns, and the child is asked the Belief Question, “Where will Sally look for her marble?” Neurotypical children over the age of 4 and children with Down Syndrome read Sally’s mind and say she would look in the basket. Younger neurotypical children and older autistic children indicated where the marble actually was, not where Sally thought it would be. The autistics had a deficit in perspective-taking.
As speech and language therapists, we try to teach autistics to improve perspective taking so they can understand the neurotypical mind, because that one is better. It is on the autistic to figure us out.
In fact, countless hours are spent teaching autistic children to solve false-belief and deictic framing tasks (like the one above) in an effort to improve social skills, only to find that outcomes are better by directly teaching socially important behaviors (Peters & Thompson, 2018).
The Double Empathy Problem:
The Double Empathy Problem is credited to the autistic scholar, Damian Milton (Milton, 2012), and is defined as follows:
“A disjuncture in reciprocity between two differently disposed social actors which becomes more marked the wider the disjuncture in dispositional perceptions of the lifeworld – perceived as a breach in the ‘natural attitude’ of what constitutes ‘social reality’ for ‘neuro-typical’ people and yet an everyday and often traumatic experience for autistic people” (Milton, 2012, p. 3).
People with different ways of experiencing the world will struggle to empathize with each other. It is a ‘double problem’ because both people experience it. The problem is not located within one person. Furthermore, there is an imbalance of power, with the neuro-majority having the ‘right’ perspective. The heavy work of empathy is placed on the shoulders of the neuro-minority, who may have fewer available resources, as they face barriers daily.
But the reality is that the so-called ‘deficit’ in empathy goes both ways. The neurotypical individual does not have the ability to imagine how the autistic mind might work, but there is no expectation that they should.
Stuttering – the speech ‘deficit’ in communication:
In stuttering, we have a double empathy problem, a problem of double misunderstanding, which also leads to an imbalance of both power and responsibility.
The stutterer talks differently, we have a list of deficits that account for it: neuroanatomical, linguistic, motor, temperament (Chang, Erickson, Ambrose, Hasegawa-Johnson, & Ludlow, 2008; Smith & Weber, 2017). So, we need to teach stutterers to talk more like neurotypical speakers to improve their communication with people with ‘normal’ speech. But there is little expectation that the neurotypical speaker should try to understand stuttering to improve their communication with stutterers; we ask very little of them: Don’t finish our sentences, and don’t mock us. And they don’t even do that!
We need to do more, especially us, the professional community. Why? Because this power imbalance leads to ableism, discrimination in favor of non-disabled people.
The stigmatized identity of “stutterer” begins early in life. Subtle messages from parents, friends, well-meaning teachers and random communication partners include advice to suppress stuttering and praise for fluency. Self-stigma leads to masking (camouflaging) and suppression for stutterers, and I believe this is the basis for struggle. We cannot underestimate the role that masking and suppression of stuttering has on the physical struggle, emotional pain, and mental exhaustion experienced by stutterers. It impacts not only communication, but quality of life, including mental and physical health. Suppression of anticipated (or actual ) feelings of loss of control may perhaps be the first attempt at masking, leading to reactivity, holding back, perhaps even core disfluency (Tichenor & Yaruss, 2019). Secondary escape/struggle behaviors allow the stutterer to (seemingly) hide overt disfluency, in an attempt to mask. Word and situational avoidance will assure the stutterer of camouflaging their stuttering identity. And, facing each day with the hope of fluency, enacting the ‘false role’ of fluent speaker perpetuates the identity conflict.
Treatment efforts have for the most part, been a one-way street – focused on changing the stutterer to appear more typical. Perhaps we, clinicians and researchers, need to do a bit of self-reflection related to the double empathy problem? How do we as speech therapists, researchers, and communicative partners unknowingly contribute to ableism through our language, our choice of goals, our teaching strategies, our omissions, or our behavior?
Here are some examples of the double empathy problem…
- Informing the stutterer how their stuttering pattern negatively impacts communication, but not teaching the stutterer to inform listeners how their reactions to stuttering negatively impact communication.
- Modeling fluency strategies for the stutterer, but being unwilling to voluntary stutter (because that would be cultural appropriation).
- Praising stutterers who mask their identity, “You sound great (so fluent)!”, and by doing so, deprive the listener of the opportunity to connect joyfully with a stutterer, and reduce stigma.
- Encouraging stutterers to self-disclose, reducing confusion and giving the stutterer permission to stutter, but not expecting the listener to share of themselves with the goal of enriching the communicative connection.
- Asking research questions that (supposedly) ‘matter’, but including stutterers as ‘subjects’, not collaborators.
- Searching out ‘deficits’ that distinguish stutterers from the rest of society, but have little application to improved quality of life for stutterers, and may lead to greater stigma.
These observations are not meant to blame or shame the listener or the professional. Recognition of the double empathy problem in stuttering will encourage us, as clinicians and allies, to support stutterers to assume the role of ‘equal’ in communication. We can do a great deal to raise awareness so that listeners finally do their half the work to reduce power imbalances and stigma in communicative interactions.
What could stutterers do?
- Take space in communication. Specifically, occupy half the space in a one-to-one conversation. Inform listeners by showing up, participating, and self-disclosing by stuttering with pride rather than apology.
- Show stuttering openly, allowing listeners to acclimate to differences in speech fluency that represent communicative diversity.
- Drop the mask and reveal the ‘identity of stutterer’. As others learn that there are stutterers among their colleagues and friends, in positions of influence, in their shops and community, and even in their family, they may shed stereotypes that contribute to stigma and associated struggle and discrimination.
Many ask if acceptance and pride are compatible with change. Environmental accommodations alone will not eliminate all difficulties experienced by stutterers. Both societal changes and therapy may be needed. According to Patrick Dwyer, an autistic researcher at the Mind Institute, “We don’t really need to call someone ‘deficient’ or ‘disordered’ to change them. We simply need to recognize that it would help them thrive, be happy, and enjoy better mental well-being if they possessed some skills…”
So, what should our therapy outcomes be? What would our goals of therapy look like? To quote Patrick again, “We can misuse the power by targeting things that can’t be changed, and we can misuse it by targeting things we shouldn’t be changing”. He notes that these questions require serious and open conversation, and these conversations must include [autistics] stutterers.
One of the many insights from Milton that I have applied to stuttering is that the ‘disorder’ of stuttering is both biologically and socially derived, but also “historically and culturally situated in discourse” (Milton, 2012, p. 5). False assumptions about the cause of stuttering stemming from trauma, poor parenting, nervousness, or lack of confidence, paired with well-meaning advice to slow down, take a breath, pause, or sing one’s words, serve to widen the disjuncture in dispositional perceptions identified by Milton. We have a lot of work to do. For me, the work begins in the therapy room, where I have the opportunity to guide stutterers to achieve their desired outcomes by embracing identity, stuttering proudly, and inviting their communicative partners to assume their share of the responsibility for joyful communication and connection.
By Vivian Sisskin
University of Maryland
Baron-Cohen, S., Leslie, A. M., & Frith, U. (1985). Does the autistic child have a “theory of mind”? Cognition, 21(1), 37-46.
Baron-Cohen, S. (1997). Mindblindness: An essay on autism and theory of mind. MIT press.
Chang, S. E., Erickson, K. I., Ambrose, N. G., Hasegawa-Johnson, M. A., & Ludlow, C. L. (2008). Brain anatomy differences in childhood stuttering. Neuroimage, 39(3), 1333-1344.
Milton, D. E. (2012). On the ontological status of autism: the ‘double empathy problem’. Disability & Society, 27(6), 883-887.
Peters, L. C., & Thompson, R. H. (2018). How teaching perspective taking to individuals with autism spectrum disorders affects social skills: Findings from research and suggestions for practitioners. Behavior analysis in practice, 11(4), 467-478.
Smith, A., & Weber, C. (2017). How stuttering develops: The multifactorial dynamic pathways theory. Journal of Speech, Language, and Hearing Research, 60(9), 2483-2505.
Tichenor, S. E., & Yaruss, J. S. (2019). Stuttering as defined by adults who stutter. Journal of Speech, Language, and Hearing Research, 62(12), 4356-4369.