The Double Empathy Problem - Understanding Social Differences in Autism

Have you ever felt misunderstood, even though you were trying to communicate clearly? This feeling is common in social interactions between autistic and non-autistic people, a phenomenon known as the "Double Empathy Problem." Coined by Dr. Damian Milton, this idea suggests that the communication challenges often attributed to autism are actually shared by both autistic and non-autistic individuals. It's not just that autistic people have difficulty understanding others; non-autistic people can also struggle to understand autistic perspectives.

Traditional views often frame autistic individuals as lacking empathy, but the Double Empathy Problem challenges this by highlighting that misunderstandings go both ways. For instance, autistic people might communicate in a very direct and straightforward manner, which can sometimes be misinterpreted by non-autistic individuals as being blunt or insensitive. On the other hand, autistic individuals might find it hard to interpret subtle social cues that non-autistic people use, like sarcasm or implied meanings.

This mismatch in communication styles can lead to social friction and misunderstandings. For example, studies have shown that non-autistic people often have difficulty understanding the emotions and intentions of autistic individuals, just as autistic people may find it challenging to interpret non-autistic social cues. This mutual misunderstanding can lead to frustration and social isolation for autistic people, as they might feel judged or misunderstood based on different social norms.

The Double Empathy Problem encourages us to think about autism differently. Instead of seeing autistic people as lacking something, it helps us recognize that social interactions are a two-way street. By understanding that both autistic and non-autistic people have unique ways of communicating and seeing the world, we can foster more inclusive and understanding communities. This means being patient, open-minded, and willing to learn from each other, which can help bridge the gap between different ways of experiencing and interpreting social interactions.

In essence, the Double Empathy Problem reminds us that communication is a shared responsibility. By embracing this perspective, we can work towards a more inclusive society where everyone's way of communicating is respected and valued.

Related Posts on [The Double Empathy Problem] 

Insights on the Complexity of Mental Health & Disability

I was a speaker on this panel by UC Davis Mind Institute on mental health on Aug 6

Recording at https://youtu.be/KEjBtzQvSug

Social Media Mentions

 On linkedIn

Autism Society Virginia - Summer Speaker Series

Speaking at Autism Society Virginia, Summer Speaker Series on Aug 5

Recording on their website at 

Disability is Possibility

Disability is Possibility.
Sweep wide open.
The door of Opportunity.
Recognition, Visibility.
Disability is Possibility.
Disability is Possibility.

Autistic Inertia - I can so relate

 https://www.frontiersin.org/articles/10.3389/fpsyg.2021.631596/full?fbclid=IwAR3deHWSI5E7xDJDgnc86aY5koey3JPu7g_u4YTuMHPAJpEisxxeyVCzN6s

"While autism is now recognized as a neurological condition, there is still a tendency to view autistic behavior as social, emotional and volitional rather than the manifestation of a differently functioning brain. Too often, autistic people are considered non-compliant or unmotivated when they fail to act. It would be easy to attribute their inaction to laziness or lack of motivation; however, several characteristics of autistic inertia distinguish it from voluntary task avoidance. First, while one may procrastinate about doing a chore that is aversive, inertia also affects activities the person enjoys. Second, even for tasks that are difficult or unpleasant, a strong enough motivator can activate an avoidant person. By contrast, participants in our study could not overcome their inertia in order to carry out a task that was important to them, often even those driven by basic needs. Third, our participants experienced as much difficulty stopping as starting, so they were not simply avoiding effort. And finally, rather than enjoying their diversion from an undesirable activity, our participants were often frustrated, annoyed and even physically uncomfortable due to their inability to act. While transient lack of motivation and avoidance of undesirable tasks is a normal part of life, this debilitating level of initiation impairment affecting even simple and enjoyable actions is clearly beyond the typical experience."

Read more on [Autistic Inertia]

Keynote - Youth Leadership Forum - Able SC

 I was keynote at the Youth Leadership Forum by South Carolina Able on 7/26/21

Instagram post by @YLF_SC
YLF 2021 is in full swing! Delegates have spent the morning building their disability pride and hearing from our keynote speaker, @harisri108 , about how small pieces of self-advocacy can lead to big changes for the disability community!

As Hari said, 'I think when you have a disability, some part of you is always in some kind of self doubt about your capabilities'. For the rest of the day, we are continuing to build our disability pride and work on ways to get past that self doubt to become strong advocates for ourselves and others!

[Image: A computer screen showing a presentation. The presentation read, 'Pebbles in the Pond of Change. Small pebbles count and add to the ripple in that pond of change'. A picture shows 5 pebbles creating a ripple effect in a body of water.]

Chat Comments during webinar

08:02:32  What is Ryan?

08:02:45  A text-to-speech program

08:02:47  his aac voice

08:02:59  mine is called tracy 08:03:25 

08:10:32 Well put, Hari. No justice unless there's justice for all!

08:11:25  I completely agree with this video, it's very well put together and nuanced

08:18:28 You've done some really impressive work Hari

08:20:36  thats really cool

08:20:55 Hari just curious why did you make it so someone else is speaking on this slideshow and not you

08:21:13 hari has a speech disability

08:21:23 It's a text to speech program controlled by Hari, so it's still him

08:21:34 he has a speech disability

08:21:53 Ah

08:31:03  Thank you for sharing your story, Hari.

08:31:15 That was awesome Hari

08:31:37 That was amazing hari

08:37:36 i like that

08:38:17 That was very unique Hari

08:38:24 thank you for sharing hari

08:38:47 Great Job Hari!

08:38:54  It's very astute, I was impressed fr

08:41:02 That was amazing harri you did amazing job 👍🏾

08:41:16 I have a question, what do you mean each pebble is our own steps?

08:45:44  Thank you Hari!

08:46:11 Even the tiny things make a difference!

My first book reading

 my first book reading (via zoom) at the Oakland Asian Cultural Center, on 7/22

The last time I was published by Scholastic in an anthology, there were readings in Battery Park,NY and I never went as I thought I would not be able to participate, much to my regret now.

So this was my very first attempt using text to speech to read out the excerpts.. yeah.

Thursday 7/22, Essential Truths has their virtual Oakland Book Launch, hosted by Oakland Asian Cultural Center, from 7:00 p.m.-9:00 p.m. PST!!!!

Chat Comments

19:03:05 From Rachall Lee, she/her (OACC) to Everyone: Today’s Program: 1) Opening & Land Acknowledgement 2) Guest Presentations 3) Open Discussion/Q&A 4) Closing 19:03:55 From Rachall Lee, she/her (OACC) to Everyone: Native Land website: https://native-land.ca/ 19:37:26 From danny ryu (they/them) to Everyone: Go hari!! 19:37:30 From Tria (she/her) to Everyone: So wonderful, Elmaz! And yay Hari!! 19:37:47 From Rachall Lee, she/her (OACC) to Everyone: Hari Srinivasan is currently a student at UC Berkeley and a student journalist at the Daily Californian. Hari is a prolific writer, having won many awards for his writing and poetry. He is also a minimally speaking autistic and passionate about disability justice. His advocacy was mentioned on President Obama’s Instagram campaign on the 30th anniversary of ADA 19:37:56 From Kelechi Ubozoh (she/her) to Everyone: I mourn the loss of the human body 19:38:05 From Diann Leo-Omine (she/her) to Everyone: Zoom the new reality 19:38:13 From danny ryu (they/them) to Everyone: A microscopic virus brought the world to its knees 19:38:32 From Sridevi to Everyone: the irony! 19:38:40 From Diann Leo-Omine (she/her) to Everyone: So true, Hari! 19:38:50 From Elmaz Abinader, She/hers to Everyone: Truth to power 19:38:54 From Lenore Naxon to Everyone: Indeed. 19:38:58 From Akemi Chan-Imai, she/her (OACC) to Everyone: <3 <3 19:39:12 From Kelechi Ubozoh (she/her) to Everyone: when the able bodied demanded it the impossible became possible overnight 19:39:20 From katie aliféris to Everyone: TRUTHS!!! 19:39:21 From Sandra Bass to Everyone: Cal in the house! 19:39:21 From Akemi Chan-Imai, she/her (OACC) to Everyone: yes!! 19:39:34 From Vanessa Cabrera to Everyone: when I was there I wasn’t 19:39:45 From Diann Leo-Omine (she/her) to Everyone: Somehow I was on equal footing 19:39:53 From Faria to Everyone: Zoom as an equalizer 19:39:58 From danny ryu (they/them) to Everyone: I became part of the conversation 19:40:07 From Sandra Bass to Everyone: A part of the conversation rather than an observer of conversations. 19:40:10 From Lenore Naxon to Everyone: He's opened my eyes. 19:40:12 From Christl Perkins to Everyone: became part of the conversation, more than an observer of conversations 19:40:17 From Shirley Huey (she/her) to Everyone: ^^^ 19:40:39 From Christl Perkins to Everyone: definitely a lot of intersectionalities 19:40:44 From danny ryu (they/them) to Everyone: yes. 19:40:45 From Shirley Huey (she/her) to Everyone: yes 19:41:00 From Yeva Johnson to Everyone: Hari, thank you for these lessons on intersectionality! 19:41:03 From Lorraine Bonner to Everyone: Elijah McClain 19:41:16 From katie aliféris to Everyone: yes!!! 19:41:20 From Sandra Bass to Everyone: survival of the kindest! 19:41:21 From Faria to Everyone: Survival of the kindest <3 19:41:21 From Tria (she/her) to Everyone: Yes, Hari! All these truths. 19:41:21 From Akemi Chan-Imai, she/her (OACC) to Everyone: survival of the kindest 19:41:24 From Kelechi Ubozoh (she/her) to Everyone: <3 19:41:24 From danny ryu (they/them) to Everyone: Survival of the KINDEST!! 19:41:28 From Yeva Johnson to Everyone: Survival of the kindest, never heard of that until today! Thank you!!! 19:41:28 From katie aliféris to Everyone: ^^^ 19:41:30 From Yeva Johnson to Everyone: ❤️❤️❤️ 19:41:30 From Shirley Huey (she/her) to Everyone: yes 19:41:37 From Tureeda Mikell to Everyone: Great information, Hari! 19:41:43 From Sridevi to Everyone: Sadly, it's true! worse for those with more intersections 19:41:53 From Sandra Bass to Everyone: Project our goodness into the world through ACTION! 19:41:54 From Tria (she/her) to Everyone: Thank you for this daily nudge <3 <3 19:41:55 From Vanessa Cabrera to Everyone: thank you!!!! 19:41:56 From Elmaz Abinader, She/hers to Everyone: yay 19:41:56 From Sandra Bass to Everyone: Thank you Hari! 19:41:56 From Faria to Everyone: Hari!! Thank you! 19:41:57 From Yeva Johnson to Everyone: Thank you, Hari!!!❤️❤️❤️❤️ 19:41:58 From danny ryu (they/them) to Everyone: Wowwwwww thank you hari 19:42:02 From Kelechi Ubozoh (she/her) to Everyone: HARI SO MOVING! 19:42:02 From Sandra Wassilie to Everyone: Beautiful message, Hari: survival of the kindest. 19:42:05 From Susana Praver-Perez to Everyone: Thank YOU Hari!!! 19:42:07 From Sridevi to Everyone: daily nudge for long term! 19:42:08 From Tureeda Mikell to Everyone: Yes all that’s Good within ourselves! Thank You!!! 19:42:12 From Christl Perkins to Everyone: Wisdom - thank you Hari! 19:42:14 From Nancy Hom to Everyone: Let us reach down into that goodness! 19:42:18 From Shirley Huey (she/her) to Everyone: Thank you Hari! 19:42:27 From Johnny Huy Nguyen to Everyone: Thank you for the real talk and the hopefulness 19:42:31 From Pardis Esmaeili to Everyone: So insightful 19:42:49 From maestro mathmattox to Everyone: 10Q so much hari!

Disability Representation in Film TV & Print Media

 Mentioned in this book apparently. 

IACC mentions

Always interesting to see comments. 

RDoc vs DSM in the context of Autism

Lexicon [Measures] RDoc, DSM

RDoc v DSM

The RDoC (Research Domain Criteria) & DSM  (Diagnostic and Statistical Manual of Mental Disorders) are both tools used in the field of mental health, but they approach the understanding and classification of mental disorders from different perspectives. 

DSM is a clinically focused tool for diagnosing mental disabilities based on symptomatic criteria, while RDoC is a research-focused framework aiming to understand mental health disorders from a multidimensional, biopsychosocial perspective

• DSM : Published by the American Psychiatric Association. It provides clear diagnostic categories based on observable behavior and reported symptoms. However, the DSM is often criticized for its categorical approach, where a patient either has or does not have a particular disability.
• RDoC : Developed by NIMH. The RDoC is not a diagnostic tool;  it's a research framework. RDoC aims to integrate many levels of information (from genomics and circuits to behavior) to better understand basic dimensions of functioning that span the full range of human behavior . The goal of RDoC is to provide a more dimensional approach to understanding mental disabilities, based on neuroscience and behavioral science, rather than purely on observable symptoms.

Autism and RDoC

Autism, under the RDoC framework, is seen not as a single, homogeneous disorder but as a spectrum that includes a variety of symptoms and behaviors that can vary widely in challenge-level and impact-level. This aligns with the current understanding of autism as a "spectrum."

For example, RDoC organizes its research around several "domains" of human psychological functioning, including cognitive processes, social processes, and arousal/regulatory systems, all of which are areas where autistics may show differences. Within these domains, RDoC further identifies specific constructs - like social communication and perception, or cognitive systems related to attention and perception - that could be targets for research into the biological and behavioral underpinnings of autism.

Challenges in implementing RDoC
There are potential challenges to implementing RDoC principles more fully into research or clinical practice for autism.

• Trying to map a heterogeneous disability like Autism onto the specific domains and constructs defined by RDoC.
• Current lack of practical tools and measures available to clinicians, to assess the various domains and constructs defined by RDoC in a routine clinical setting. This includes standardized measures for assessing constructs like social communication and perception, or the cognitive systems related to attention and perception that are relevant to autism.
• Need for further research: to validate the constructs and domains defined by RDoC, and to understand how these relate to the symptoms and behaviors associated with autism. We need a deeper understanding of the relationships between the biological, psychological, and behavioral aspects of autism to fully implement the RDoC approach.
• Changing Existing Systems & Acceptance in the Clinical and Research Community:  Current diagnostic systems like DSM-5 are deeply rooted in many aspects of mental health care. It must gain acceptance not only among researchers, but also among clinicians, educators, and families. This requires education and evidence that the RDoC approach can improve outcomes for autistics.

Related Posts: [DSM], [ICD], [RDoC], [Diagnosis],[Measures]

Double Empathy and Autism - Reframing Social Communication Challenges

The "Double Empathy Problem," a concept introduced by Dr. Damian Milton, challenges the traditional view that autistic individuals have a deficit in empathy. Instead, it posits that difficulties in social communication and understanding arise from a mismatch in neurotypical and autistic communicative styles, rather than a unilateral deficiency in autistic individuals. This perspective suggests that misunderstandings are bidirectional, resulting from differences in social norms, communication styles, and cognitive processing between neurotypical and autistic people (Milton, 2012).

Research supports the Double Empathy Problem by highlighting that both autistic and neurotypical individuals can experience challenges in understanding and empathizing with each other's perspectives. For example,  Sheppard et al. (2016) found that neurotypical participants often struggled to interpret the emotions and intentions of autistic individuals, mirroring the difficulties that autistic individuals face when interpreting neurotypical communication cues. This mutual misunderstanding can lead to social friction, reduced social cohesion, and the reinforcement of stereotypes about autism.

Furthermore, studies indicate that autistic individuals often employ different communicative strategies, such as directness or focusing on specific details, which can be misinterpreted by neurotypical individuals as inappropriate or lacking empathy (Crompton et al., 2020). These differences in communication style can exacerbate social isolation and contribute to the stigmatization of autistic individuals, as they are often judged against neurotypical social norms.

The Double Empathy Problem also emphasizes the importance of a more inclusive and reciprocal approach to social interaction. This involves recognizing and valuing diverse communicative styles and fostering environments where both autistic and neurotypical individuals can engage on equitable terms.

Related Posts on [The Double Empathy Problem] 

References:

• Milton, D. (2012). On the ontological status of autism: the ‘double empathy problem.’ Disability & Society, 27(6), 883-887.
• Sheppard, E., Pillai, D., Wong, G. T., Ropar, D., & Mitchell, P. (2016). How easy is it to read the minds of people with autism spectrum disorder? Journal of Autism and Developmental Disorders, 46(4), 1247-1259.
• Crompton, C. J., Ropar, D., Evans-Williams, C. V., Flynn, E. G., & Fletcher-Watson, S. (2020). Autistic peer-to-peer information transfer is highly effective. Autism, 24(7), 1704-1712.

HHS Announcement of IACC Member Appointment

https://iacc.hhs.gov/news/2021/iacc-new-members.shtmlContact: Office of Autism Research Coordination/NIH
Email: IACCPublicInquiries@mail.nih.gov

HHS Announces Appointment of New Members to the Interagency Autism Coordinating Committee

Wednesday, July 7, 2021

The U.S. Department of Health and Human Services (HHS) today announced the appointments of new and returning members to the Interagency Autism Coordinating Committee (IACC), a federal advisory committee reauthorized under the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019. The IACC is a federal advisory committee composed of public stakeholders and federal officials that coordinates federal activities concerning autism spectrum disorder and provides advice to the HHS Secretary on issues related to autism. Committee meetings serve as a public forum for the sharing of community perspectives and concerns about autism. The committee uses this input as it formulates advice and recommendations for the HHS Secretary on matters related to autism research, services, and policy. The committee's responsibilities include developing and annually updating the IACC Strategic Plan for Autism Spectrum Disorder (ASD) and preparing an annual Summary of Advances in ASD Research.

After an open call to the public for nominations of individuals to serve on the committee, Secretary of Health and Human Services, Xavier Becerra, J.D., appointed 20 new and two returning public members to the IACC to provide him with advice to advance research, enhance services, and increase opportunities for people on the autism spectrum. The committee also includes 23 new and returning federal officials representing key federal agencies and departments that serve the autism community across a wide variety of areas, including biomedical research, healthcare, education, and social services. Joshua Gordon, M.D., Ph.D., director of the National Institute of Mental Health, will continue to serve as the chair of the committee. The first meeting of the new committee will take place virtually on July 21-22, 2021 and will be open to the public via webcast. A full roster and biosketches of all the new and returning members can be viewed on the IACC website.

IACC Executive Secretary, Susan Daniels, Ph.D., stated, "We are excited to welcome the largest and most diverse IACC to date, with a wider representation of perspectives from across the autism community than ever before."

Public members appointed include autism self-advocates, parents and family members of children and adults on the autism spectrum, clinicians, researchers, and leaders of autism research, services, and advocacy organizations. Many of the appointed individuals serve multiple roles, such as parent and researcher or self-advocate and leader of an advocacy organization. Appointees hail from across the U.S., including states that have not been represented on the committee previously, such as Louisiana, Maine, Texas, Washington, Vermont, and Wisconsin.

Autism and disability organizations represented by new and returning appointees to the IACC include the Autism Science Foundation, Autistic Self Advocacy Network, Autism Speaks, Champions Foundation, Simons Foundation, and Madison House Autism Foundation. Four federal departments newly joining the IACC —the U.S. Department of Housing and Urban Development, U.S. Department of Justice, U.S. Department of Labor, and U.S. Department of Veteran Affairs—will provide additional expertise in the critical areas of housing, employment, interactions with law enforcement, and care for veterans on the autism spectrum.

Public members appointed by the Secretary to serve on the IACC from 2021-2024 are:

• Maria Mercedes Avila, Ph.D., M.S.W., M.Ed.Associate ProfessorDepartment of PediatricsLarner College of MedicineUniversity of VermontBurlington, Vermont
• Alice Carter, Ph.D.ProfessorDepartment of PsychologyUniversity of Massachusetts Boston
• Samantha Crane, J.D.Legal DirectorAutistic Self Advocacy NetworkWashington, D.C.
• Aisha Dickerson, Ph.D.Assistant ProfessorDepartment of EpidemiologyBloomberg School of Public HealthJohns Hopkins UniversityBaltimore, Maryland
• Dena Gassner, M.S.W.Ph.D. Candidate in Social WorkAdelphi UniversityWest Hempstead, New York
• Morénike Giwa Onaiwu, M.A.Humanities ScholarCenter for the Study of Women, Gender, and SexualityRice UniversityHouston, Texas
• Alycia Halladay, Ph.D.Chief Science OfficerAutism Science FoundationNew York, New York
• Craig Johnson, B.A.Founder and PresidentChampions FoundationHouston, Texas
• Yetta Myrick, B.A.Founder and PresidentDC Autism ParentsWashington, D.C.
• Lindsey Nebeker, B.A.Freelance Presenter/TrainerAlexandria, Virginia
• Valerie Paradiz, Ph.D.Vice PresidentServices and SupportsAutism SpeaksPrinceton, New Jersey
• Jenny Mai Phan, Ph.D.Post-Doctoral FellowWaisman CenterUniversity of Wisconsin-Madison
• Joseph Piven, M.D.Thomas E. Castelloe Distinguished Professor of Psychiatry and PediatricsUniversity of North Carolina-Chapel Hill
• JaLynn R. Prince, B.F.A.Co-Founder, President, and ChairMadison House Autism FoundationRockville, Maryland
• Susan Rivera, Ph.D.Professor and ChairDepartment of PsychologyUniversity of California, Davis
• Matthew Siegel, M.D.Vice President of Medical AffairsDevelopmental Disorders Service LineMaine Behavioral HealthcareWestbrook, Maine
• Ivanova Smith, B.A.Self-Advocate FacultyLeadership Education in Neurodevelopmental and Related DisabilitiesUniversity of WashingtonTacoma, Washington
• Hari SrinivasanStudentUniversity of California, Berkeley
• Helen Tager-Flusberg, Ph.D.ProfessorDepartment of Psychological and Brain SciencesBoston UniversityBoston, Massachusetts
• Julie Lounds Taylor, Ph.D.Associate ProfessorDepartment of PediatricsVanderbilt University Medical CenterNashville, Tennessee
• Paul Wang, M.D.Deputy DirectorClinical Research Associates, LLCSimons FoundationNew York, New York
• Stephen Whitlow, J.D.Executive DirectorTransition ServicesMerakeyBaton Rouge, Louisiana

The IACC is a federal advisory committee that was created by Congress in an effort to accelerate progress in ASD research, services, and policy. The IACC works to improve coordination and communication across the Federal government and works in partnership with the autism community. The documents and recommendations produced by the IACC reflect the views of a federal advisory committee, which is composed of federal officials and public stakeholders, but do not represent the views, official statements, policies or positions of the federal government. For more information on the IACC, please visit: iacc.hhs.gov.