What Does 'Mind-Blindness' Mean—and How Does It Hurt Autistic Kids?

The 'double empathy problem' explains the way autistic children communicate with neurotypical friends and family much more accurately.

For many parents of neurodivergent children, a diagnosis often comes accompanied by a slew of specialists, therapy appointments to attend, treatment options to choose from, and of course, a whole new vocabulary of niche terms that find their way into daily conversations. For families navigating an autism diagnosis, “mind-blindness” has long been used to describe the mental states many individuals on the spectrum experience––but in recent years new studies show the term is likely inaccurate, and may actually limit possibilities for emotional connection.

The consequences of inaccurately labeling a group of people and their ability to connect can have far-reaching effects. These range from how we perceive small daily interactions with loved ones with autism, to creating unsafe, and potentially deadly, environments for neurodivergent individuals already at risk for discrimination. Recent research offers a more nuanced view that can help reduce misunderstandings around the neurodivergent experience.

A Damaging Term

The phrase “mind-blindness” first emerged in 1990 in reference to what were termed “deficits” exhibited by individuals with autism. Dr. Karen J. Parker, an Associate Professor with the Department of Psychiatry and Behavioral Sciences at Stanford University School of Medicine, is an expert in the biology of social functioning and says that to understand the term “mind-blindness” it’s helpful to know how it relates to another concept known as “theory of mind.”

“Mind blindness [...] is typically defined as the inability to attribute or recognize the cognitive/emotional states of others, and/or predict their behavior,” she says. “When this ability is considered intact, it is often referred to by researchers as having ‘theory of mind (ToM).’”

While the terminology was originally widely accepted and used throughout the autism community and autism research community for decades, many researchers now agree that when considering the social abilities of individuals with autism, the term “mind-blindness” is problematic in a variety of ways.

“The term “mind-blindness” implies a total lack of theory of mind in people with autism, which has not been borne out by most research,” Dr. Parker says. “It is important to recognize that [...] each person with autism is an individual, with their own challenges and strengths.”

Megan Thunberg is a Registered and Licensed Occupational Therapist with years of professional experience working with children with autism and feels that using phrases like “mind-blind” to describe individuals with autism produces a very narrow view of their capabilities.

“[It] can be reductive in its description of the social differences of Autistic people,” she says. “It has often been used or interpreted as a way to indicate that Autistic people lack empathy, which is not the case. The autism spectrum also encompasses individuals with a wide variety of presentations, skills, and communication styles, and assuming a person is ‘mind blind’ is, again, a generalization that may presume an incompetence that is not accurate.”

Thunberg says that as a phrase, “mind-blindness” also communicates that this emotional ability is “something that potentially can’t be improved upon,” which might further limit how individuals view emotional potential and capability within the autism community.

"She's very loving."

Shakera Kemp, a first-time mom whose three-year-old daughter was recently diagnosed with autism, has witnessed how these terms and labels make a world of difference in the ways people perceive neurodivergent children.

Kemp says she knew her daughter was neurodivergent even before she received her formal diagnosis, but that it was difficult to share the news with friends and family at first because they initially had a limited understanding of what the diagnosis meant for her daughter. As a Black woman, she understands why so many friends and family members may have a distrust of the medical community, but she was determined to advocate for her daughter.

She remembers that people would often tell her that her daughter’s diagnosis was surprising to them because she didn’t “look” like someone with autism, and how some even insisted that it wasn’t possible for her daughter to have autism, rejecting the possibility of a diagnosis altogether.

She says she understands why some parents, especially those within Black communities, might balk at the idea of a diagnosis.

“They don’t want their child to be labeled, limited, or looked at in a different light,” she reflected. “But your child is different.”

Kemp feels it’s important to advocate for a more inclusive view of individuals, and especially children who receive neurodivergent diagnoses, like the autism diagnosis her daughter received. “Everybody is different,” she reflects. “So it’s OK for them to be different because literally every person in this world is different from each other.”

When it comes to supporting her daughter’s emotional development as a child with autism, Kemp says her daughter––like any child with or without an autism diagnosis––experiences a range of emotions and is loving and kind.

“She’s very loving,” Kemp says of her daughter, sharing that she is quick to dole out hugs and kisses. Kemp notes that just as she would with a neurotypical child though, she has been teaching her daughter to read social cues and is helping her to build her emotional toolkit both by helping her name emotions and through other tools like an app that illustrates different feelings.

Kemp shares that her daughter has begun mirroring others, taking in emotive moments from others, and thoughtfully observing when she witnesses others expressing themselves––and is becoming increasingly empathetic, a quality historically not associated with medical diagnoses of autism.

A Two-Way Street

Joseph Veneziano is a Ph.D. student in Applied Psychology and Prevention Science at the University of Massachusetts Lowell and researches autism across a variety of contexts, including working as a clinician with adults with autism and other developmental disabilities. He notes that a failure of the theory of mind-blindness, which is not a term that is used within the autism self-advocacy community, is that it does not account for what is known as emotional empathy which is an important and necessary component of social interactions.

“‘Mind blindness’ [...] only really accounts for one kind of empathy––cognitive empathy, or the ability to infer what others are thinking. However, empathy expands beyond that one dimension to also include emotional empathy––the ability to feel what others are feeling.”

When it comes to better understanding how empathy plays into social interactions, especially those between neurotypical individuals and individuals on the autism spectrum, Veneziano notes that researchers have increasingly studied what is known as “the double empathy problem.”

“Basically, the double empathy problem [says that] when there is a mismatch between two people, it can lead to faulty communication,” he shares. Veneziano also notes that when communication problems arise between an individual with autism and an individual who is neurotypical, the misunderstanding is usually attributed to the individual with autism. In reality, the double empathy problem shows the reverse can also be true.

“The double empathy problem recognizes that communication breakdowns are, in part, due to the failure of a neurotypical person understanding how an autistic person communicates,” Veneziano shares. “The important thing to understand is that empathy is a two-way street, and to understand communication and interactions, one must examine all sides.”

Though individuals outside of the autism community might not be familiar with terms like “mind-blindness” or “theory of mind,” for many parents of children with autism, advances like those examined by the double empathy problem can have real impacts on how they’re able to advocate for and care for their children’s needs.

This view also reveals how shared understanding exists through shared experience rather than any inherent well-being or “deficit.”  For instance, no individual knows from birth how to interpret social-emotional cues. Facial expressions and body language can vary widely from culture to culture, as can the socially acceptable responses to expressed emotions. Even when neurotypical individuals are taught to interpret these cues within their cultural context, they still vary in their abilities to process such interactions.

“Not everybody can pick up on social cues,” Kemp says, pointing out that even neurotypical individuals struggle from time to time to connect the dots when it comes to interpreting emotions. “These things are scripted. We don’t wake up knowing ‘Oh, crying means I’m sad,’ because crying can mean you’re happy too. It’s all about teaching [...] about these differences.”

Dr. Parker shares Kemp’s view. “I personally think of human characteristics, behaviors, [and] abilities on a spectrum generally, rather than as a dichotomy,” she says. “So, it might be better to conceive of this construct as theory of mind ability, and recognize that individuals in the general human population also vary in this ability, with at least some individuals with autism having more difficulty in this domain.”

Handling With Care

Such perspectives can help us better understand and support the neurodivergent individuals in our lives. However, like any parent, Kemp still worries for her daughter.

“My biggest fear is someone not handling her with care,” Kemps says, noting that she worries about discrimination and bullying, especially as many parents of neurotypical children might not think to educate their children about conditions like autism.

And while many parents of children with autism worry about their children’s futures, Kemp knows the stakes for Black children with autism are still higher.

“I worry, what if something happens to her and she goes to law enforcement, will they believe her?” Kemp says. “If she’s stimming because she’s overwhelmed, would they use that against her? What if she’s driving and [...] she grabs something and then guns are drawn? I think all of these horrible things because these things are real. Law enforcement may not have received that training to navigate these situations. Sensitivity training around certain things can be missed.”

Ultimately, advances in research can help us see the person behind the diagnosis and create more room for compassion and understanding. By the same token, removing antiquated, inaccurate phrases from the language we use to discuss a group of individuals allows for more nuance and empathy in both diagnosis and daily conversation.

Kemp hopes that both institutions and individuals, especially those who identify as neurotypical, will take the time to educate themselves before jumping to conclusions about children like her daughter who experience neurodivergence. She knows that education and creating room for conversations could change the way individuals with autism experience the world around them.

“When you slow down you can take a step back and look at things from a different perspective,” Kemp says. “You can check your bias.”

“As a Black mom to a baby with disabilities, I know it’s going to be a lot harder for her to navigate this world. But as she gets older, I hope the world will become more accepting. I would hope these systems she’ll be a part of will do right by her.”

Kemp says that taking even just a moment to reflect before reacting could ultimately create a better world for individuals with autism. “A world where autistic people don’t have to mask or assimilate to what neurotypical folks do,” she says. “Where they can just be.”

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