I was a speaker on this panel by UC Davis Mind Institute on mental health on Aug 6
Disability is Possibility
Sweep wide open.
The door of Opportunity.
Recognition, Visibility.
Disability is Possibility.
Disability is Possibility.
Autistic Inertia - I can so relate
Keynote - Youth Leadership Forum - Able SC
I was keynote at the Youth Leadership Forum by South Carolina Able on 7/26/21
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.]
My first book reading
my first book reading (via zoom) at the Oakland Asian Cultural Center, on 7/22
RDoc vs DSM in the context of Autism
- 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.
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.
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