This article originally appeared in START Connecting in April 2024. 

At the 24th Annual START Conference, we are focusing on Creating Connections and Strengthening Belonging through presentations by four excellent presenters speaking to the experiences of autistic individuals and family members, the neurodiversity paradigm, and strategies that promote meaningful inclusion and peer interaction. Through these presentations, we want to gain new insights into the experiences of autistic individuals and their family members. 

For this month’s START Connecting, we are featuring an article from one of our presenters, Dr. Laura DeThorne, Ph.D. CCC-SLP. She brings multiple perspectives to the topic of neurodiversity as a parent of an autistic son, a professional trained in speech-language pathology, and a faculty member training future professionals. In this article, Dr. DeThorne introduces the double-empathy problem as a new way of thinking about empathy and communication between autistic individuals and their neurotypical communication partners.   

- Amy Matthews, Ph.D., BCBA, Project Director 

This material is copyrighted and is used with the permission of the American Speech-Language-Hearing Association (ASHA).

https://doi.org/10.1044/leader.FTR2.25042020.58

At age 2, my son’s first words didn’t seem to “stick.” He wasn’t imitating speech sounds, and his response to his name became less reliable. During the preschool years, his teachers noted his solitary play, difficulty sitting for circle time, and sensitivity to the feel of sunscreen and certain types of clothing.

As a speech-language pathologist, I knew these observations were consistent with autism, but I resisted the diagnosis. I had a hard time reconciling my son’s social and caring nature with how autistic individuals were depicted in our professional literature.

From an early age, my son was affectionate and thoughtful, and enjoyed making others laugh. Even before he had consistent access to words, he would frequently look out for his older brother and get visibly distraught if other children at school were upset.

One of his choice activities was to sit with us and watch his favorite movies. If one of us happened to get distracted, he would gently use his hand to reorient our face back toward the TV so that we wouldn’t miss the best parts. My educational training taught me to associate autism with a lack of ability to share and understand the feelings of others—a lack of empathy—and that simply didn’t describe my son. Accordingly, I assumed that either a) my son was not autistic, or b) much of what I had learned about autism was wrong.

Some of the earliest writings about autistic children described them as being unaffected by other people and unable to achieve empathy. The predominant “theory of mind” model advanced by Simon Baron-Cohen and colleagues in the 1980s attributed autism to “mindblindness”: an inability to understand that other people know, want, feel, or believe things. This perspective continues to frame how autistic differences are perceived today.

Early diagnostic indicators are couched in similar terms of social-emotional impairment, with the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) of the American Psychiatric Association noting possible “reduced sharing of interests, emotions, or affect” and “absence of interest in peers” [link no longer available] (see also ASHA’s Practice Portal for information on autism for clinicians).

It was not until I began reading the work of openly autistic adults that I was able to accept my son’s autism diagnosis and to see our professional literature in a new light. In particular, writings by autistic scholars Elizabeth “Ibby” Grace and Dawn Prince-Hughes were some of the most empathic and insightful narratives I had ever read. In her autoethnography, Prince-Hughes writes of her autism: “My world is a place where people are too beautiful and too terrible to look at, where their mouths speak words that sometimes fall silent on my ears, while their hearts break audibly.”

Such poignant examples of empathy are evident from individuals with a wide variety of autistic profiles, including individuals with relatively limited speech. Having been described as “severely autistic,” the 13-year-old author Naoiki Higashida explained in his book, “The Reason I Jump,” that autistic people prefer to be alone because of their sensitivity to other people: “For people with autism, what we’re anxious about is that we’re causing trouble for the rest of you, or even getting on your nerves. This is why it’s hard for us to stay around other people. This is why we often end up being left on our own.”

Some autistic authors have explicitly noted the intensity of their feelings for others. In a roundtable discussion on the topic of empathy, published in the journal Autism in Adulthood, autistic scholar Damian Milton notes, “When I feel compassion, love, pain, and hurt for myself or others, either I am not feeling it very much or I am feeling it very intensely.”

On a similar note, on the channel “ChoosingMorality,” an autistic vlogger talks about the tendency for others to misunderstand her, and the negative consequences that has had on her life. She states, “I truly care. I care more than most people. I think that is one of the … symptoms of, of an autistic person, or at least some … I don’t know, but I know that I care.”

How, then, do we reconcile the empathy deficits reported throughout our professional literature with the actual first-person experiences of autistic individuals? One possibility is that there are different types of empathy. Specifically, some scholars—such as a team out of the New York University School of Medicine—have suggested that autistic versus nonautistic individuals differ in terms of cognitive empathy, which involves understanding another person’s perspective, but not in terms of affective empathy, which involves having feelings of warmth, compassion, and concern for others.

However, all forms of empathy are likely impacted by what autistic researcher Damian Milton has termed the double empathy problem. Specifically, Milton, of the University of Kent, highlights empathy as a bidirectional phenomenon and notes that both autistic and nonautistic individuals may have difficulty understanding and feeling for one another because of their differing outlooks and experiences with the world.

Although the misunderstanding may be bidirectional, it disproportionately stigmatizes autistic people when their perspectives are not adequately represented within institutional power structures, like education, research, and medical systems. When autistic perspectives are not heard, it becomes easy for autistic behavior to be misunderstood and pathologized. Note, for example, much of the autism literature focuses on helping autistic individuals understand nonautistic perspectives, rather than the other way around.

In his autobiographical book “Look Me in the Eye,” autistic author John Elder Robison talks how about how his discomfort making direct eye contact was often interpreted as a sign that he was “no good,” a criminal, or a sociopath. In regard to empathy in particular, he shares a memorable incident during which his reaction to the tragic news of a boy being hit by a train was misinterpreted. He had smiled from relief that it wasn’t someone he knew who was killed, but his smile was interpreted by his mother and her friend as him thinking the tragedy was funny.

Robison also notes his own tendency to question the sincerity of nonautistic individuals’ emotional reactions to tragic events that befall individuals they have never met. He writes in the book, “People die every minute, all over the world. If we tried to feel sorry for every death, our little hearts would explode.”

As Robison’s autobiography illustrates, misunderstandings of autistic behavior can contribute to discriminatory attitudes toward people on the autism spectrum. In particular, empathy is fundamentally tied to our concept of personhood. Consequently, narratives of mindblindness and empathy deficits make it easier to see autistic individuals as less than human and can fuel harmful stereotypes like the “autistic shooter”.

Stigma associated with autism can overshadow critical data, such as statistics from the Bureau of Justice indicating that people with disabilities are 2.5 times more likely to be victims of violent crime than people without disabilities. Stigma can also instill resistance to an autism diagnosis, as was the case for me with my son. Despite my early inklings, I did not seek an official medical diagnosis of autism for my son until he was 5, when it was necessary to obtain adequate educational support.

So what can an SLP do? As communication experts, we can play an important role in helping others recognize how empathy and related social gestures in autistic individuals may be misunderstood. Here are some ways we can educate others.

Bust myths about autism and empathy

We can help others recognize and counter the stereotype that autistic individuals lack empathy. We can share relevant facts, such as the greater tendency for autistic individuals to be victims than perpetrators of violence, and point to popular high-profile autistic role models, like Greta Thunberg, who are passionate about the greater good.

Identify unconventional displays of caring

As communication experts, we are uniquely qualified to help others identify unconventional displays of empathy. As a mother, I recall describing my son to a new childcare provider, including the fact that he wasn’t talking yet. With pity in her expression, she asked, “You mean, he can’t even say he loves you?” Of course, my son didn’t need words to show me he loved me, but her words still stung.

There is a tendency for many of us to focus on conventional gestures of affection, such as words and eye gaze, often leading us to overlook touch and postural cues. One of my colleagues shared with me how hurtful it was for her that her autistic son didn’t make frequent eye contact with her, because she associated eye contact with caring. She relayed that one of the best homework assignments an SLP gave her was to spend a week observing and writing down all the ways her son showed her that he cared about her. Her resulting list, which included him bringing her books and sitting side-by-side reading together, helped shift how she perceived him and their relationship in positive ways.

Serve as a behavioral interpreter

The double empathy problem implies that social interactions between autistic and nonautistic individuals are likely to be challenging, especially with unfamiliar communication partners. This is where supporting interaction through behavioral interpretation is key. Insights from autistic scholars indicate that, rather than trying to “fix autistic deficits,” as the mindblindness model might indicate, a more constructive approach may be to help autistic and nonautistic individuals understand one another by focusing on the why behind human behaviors.

A supporting perspective comes from the neurodiversity paradigm, which frames autism as a natural form of neurological variation that leads to different patterns of interaction. Accordingly, in addition to helping an autistic individual understand nonautistic behaviors and expectations, nonautistic individuals also need help understanding autistic behavior.

For example, we might offer guidance to a nonautistic teacher that some autistic students find eye contact uncomfortable and distracting. Consequently, eye contact may not be a reasonable expectation. Similarly, many professionals and parents may be unaware that repetitive behaviors such as hand-flapping, rocking, and pacing are often an important form of self-regulation needed to manage overstimulating environments or intense emotional states. Consequently, discouraging such repetitive movements may actually escalate stress and decrease positive engagement. Efforts might be better directed at finding the source of stress and creating more comfortable environments for the autistic individual.

Successful interpretation is often dependent on gaining insider knowledge, which can be challenging for those of us who are not autistic. Fortunately, there are a substantial and growing number of resources to help. A few key examples include:

• The book “Ask an Autistic Kid” by Daniel Stefanski.
• The book “The Reason I Jump” by Naoki Higashida.
• The documentary “Neurotypical.” [correction - https://www.pbs.org/pov/films/neurotypical/]
• The YouTube channel “Neurowonderful” by Amythest Schaber.
• The TED Talk “Women and Autism” by Sarai Pahla. [video no longer available]

Another resource is the Autistic Self Advocacy Network (ASAN), which presents autistic traits as a form of neurodiversity, as opposed to a pathologized set of symptoms. This information can help individuals and families process a new diagnosis in a constructive way.

Another tool for clinicians and families alike is a search engine devoted to blogs written by #actuallyautistic individuals. The site allows a user to search topics such as “self-injury” or “stimming” and access content written specifically by autistic authors. As an example, my recent search for “empathy” revealed more than 112 million results.

In closing, I am grateful for the autistic voices that helped me see my son for who he is now: a 16-year-old autistic youth whose unique sociality and caring nature has blossomed into full-blown curiosity about the human condition.

The other night as I attempted to redirect his inwardly focused attention back to his math homework for what seemed like the 10th time, I stopped to ask him, “What are you thinking about right now?”

“Humanity,” he told me.

Laura DeThorne, PhD, CCC-SLP, is chair of and professor in the Department of Speech, Language and Hearing Sciences at Western Michigan University. She is an affiliate of ASHA Special Interest Groups 10, Issues in Higher Education; and 14, Cultural and Linguistic Diversity. She researches factors shaping communicative competence in everyday contexts, particularly in the areas of autism, childhood apraxia of speech, and use of augmentative and alternative communication. [email protected]

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