The Double Empathy Problem

In The Politics of Autism, I look at the daily struggles of autistic people, including stereotypes and myths.

 Cheang, R. T., Skjevling, M., Blakemore, A. I., Kumari, V., & Puzzo, I. (2024). Do you feel me? Autism, empathic accuracy and the double empathy problem. Autism, 0(0). https://doi.org/10.1177/13623613241252320. Lay abstract:

The assumption that autistic people lack empathy, particularly imagining how others feel, has been much debated and is now being challenged by an alternative view: the ‘double empathy problem’. This suggests that non-autistic people may find it equally difficult to imagine how autistic people feel. Although this perspective is gaining popularity, research testing whether non-autistic people can accurately imagine and feel an autistic person’s emotions is still limited. Our study used video clips of autistic and non-autistic people recounting emotional events to test if participants from the general population could: track the intensity of the narrators’ emotions; name and feel the same emotion; match where the narrator felt the emotion and indicate how intensely they felt the emotion using a body map. Our results show that participants found it significantly harder to track autistic narrators’ emotions compared to non-autistic narrator’s emotions, especially when viewing clips of narrators feeling happy and sad. We also found that participants felt emotions more intensely in the body when viewing clips of autistic narrators compared to non-autistic narrators, especially when describing anger and fear. These findings support the double empathy problem and have strong implications for therapeutic and interpersonal relationships with autistic people.

Neurotypicals Isolate Autistics

In The Politics of Autism, I write about the everyday struggles facing autistic people. Social isolation is a big one.

Steve Silberman at Scientific American:

A recent study by Rutgers University’s Annabelle Mournet and colleagues concluded that autistic people may be even more powerfully motivated to seek out friendships and community than nonautistic people. These desires are often frustrated by widespread misconceptions about autism, particularly the assumption that people on the spectrum aren’t interested in seeking comfort and support in the company of others. “Autistic adults cannot be assumed to have fewer social connections—or less desire to have social connections,” Mournet wrote in Spectrum. “Our field must work to dismantle these damaging and inaccurate notions.” Dismantling these false notions matters urgently, Mournet points out, because autistic adults are at high risk for suicide, and having a network of supportive connections protects against suicidal ideation.

The tendency of neurotypicals to stigmatize autistic behavior as weird and off-putting also hampers the formation of relationships. This process unfolds subconsciously—even in the first few seconds of interaction, observes Noah Sasson, a psychology professor at the University of Texas at Dallas whose work is deeply informed by the insights of autistic colleagues like Monique Botha. By conducting a study of neurotypicals’ first impressions of autistic people (known in psychology as “thin-slice judgments”), Sasson and his colleagues determined that negative reactions to autistic adults’ atypical body language, facial expressions, tone of voice and frequency of eye contact lead neurotypicals to be less inclined to pursue further interactions. These thin-slice judgments pervasively harm autistic adults’ attempts to find employment, build networks of support and navigate the social landscape in ways that lead to happy, secure and successful lives.

Workplace "Hidden Curriculum"

In The Politics of Autism, I discuss the employment of people on the autism spectrum.

Karla L. Miller at WP:

While the topic of disabilities often brings to mind visible markers — wheelchairs, guide dogs, sign language — many health conditions aren’t as readily apparent. It’s especially difficult to detect the barriers that prevent neurodivergent adults — those with attention deficit, autism, dyslexia, or other neurological differences — from accessing fulfilling full-time employment.

The Centers for Disease Control and Prevention estimates that 2.2 percent of adults are on the autism spectrum, although the condition often goes undiagnosed, particularly in women. Joseph Riddle, director of Neurodiversity in the Workplace, estimates that “fewer than 1 in 6 neurodivergent job seekers are employed full-time at the level they should be.”

When people do land full-time jobs, they often encounter internal barriers that make it difficult to keep those jobs. “Every workplace has what’s called a ‘hidden curriculum,’ ” says Riddle — an implicit set of assumptions and expectations about how people behave and communicate that can be difficult for neurodivergent thinkers to navigate.

DSM and SCD

At  The Chicago Tribune, Wendy Donahue writes:

The previous edition of the DSM included three distinct subgroups under the broad definition of ASD: autistic disorder (AD), Asperger's disorder and pervasive development disorder-not otherwise specified (PDD-NOS).

The latest edition of the manual eliminates those subgroups. It adds a new subcategory called social communication disorder (SCD) to diagnose people who have verbal and nonverbal communication impairments but lack other attributes associated with autism.

Some people diagnosed with PDD-NOS under the old manual would be identified as people with SCD under the new manual.

Some states are "grandfathering in" those diagnosed under the old criteria so they don't lose insurance coverage, said Genevieve Thornton, a clinical psychologist and owner of SociAbility in Northbrook, Ill., which offers programs and therapy for children and adults with ASD, ADHD and related conditions.
...
In recent years, many states have mandated that insurance companies cover applied behavior analysis, delivered by a board-certified behavior analyst, for people diagnosed with an ASD, said Dr. Jeff Skowron, a licensed psychologist and clinical director for Autism Intervention Specialists in Worcester, Mass.

As insurance companies adapt to the diagnostic changes, he said, some plans may not cover services for the new social communication disorder. That could lead to inappropriate diagnoses to enable the person to obtain treatment.

Autism, Asperger, and Social Communication Disorder

;Jennifer Wright writes at SFARI:

Most of the children who would lose their autism diagnosis under the diagnostic criteria released last year will fall under the new category of social (pragmatic) communication disorder (SCD), reports a large study of Korean children. The study was published last week in the American Academy of Child and Adolescent Psychiatry1.

SCD is a condition that includes severe social and communication deficits but lacks the repetitive behaviors and restricted interests seen in autism.

It is unclear exactly how the newest version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), released amid controversy in May last year, will affect people with autism, despite a plethora of studies addressing the issue.

On 22 January, researchers at the U.S. Centers for Disease Control and Prevention (CDC) reported that as many as 20 percent of people found to be on the autism spectrum using previous criteria would lose this designation with the DSM-5.

In contrast, the Korean study — which the journal rushed into publication the following day — suggests that only 8 percent of children would show a change in diagnosis under the DSM-5. More than three-quarters of these children had a diagnosis of pervasive developmental disorder-not otherwise specific (PDD-NOS), the mildest and arguably least clearly defined autism diagnosis in the DSM-IV.

Unlike the CDC study, these findings rely on careful clinical review of each child’s records and consider several diagnostic categories in both editions of the DSM, says lead researcher Young Shin Kim, associate professor at the Yale Child Study Center in New Haven. “We got rid of every possible variance, which might bring in differences in the diagnosis,” she says.

...
One of the most controversial changes in the new guidelines is the consolidation of three autism spectrum diagnoses in the DSM-IV — autistic disorder, Asperger syndrome and pervasive developmental disorder-not otherwise specified (PDD-NOS) — into a single label of autism spectrum disorder in the DSM-5.

While the guidelines were still being debated, there was widespread concern that individuals with Asperger syndrome would lose their autism diagnosis. But for many, the final version of the DSM-5 allayed fears that children with an existing diagnosis of autism would no longer qualify for services.

The findings of the Korean study should further reassure people that this is unlikely to happen, says Kim: Only 5 children diagnosed with either autistic disorder or Asperger syndrome under the DSM-IV lost that diagnosis with the DSM-5. Four of those children meet the criteria for SCD and the fifth for ADHD.

“The good news is that people with Asperger syndrome should not have to worry, because they are going to be diagnosed with [autism spectrum disorder],” says Kim. “The problem lies with PDD-NOS, because they do not meet the criteria for repetitive behavior and restricted interests.”