https://medschool.vanderbilt.edu/brain-institute/about-us/team-directories/#h2-graduate-student-directory
Vanderbilt Brain Institute Graduate Student Directory
Just noticed I'm in the Grad Student Directory of Vanderbilt Brain Institute.
https://medschool.vanderbilt.edu/brain-institute/about-us/team-directories/#h2-graduate-student-directory
https://medschool.vanderbilt.edu/brain-institute/about-us/team-directories/#h2-graduate-student-directory
The end of Autism Month
April is Autism Acceptance Month.
On April 30th there is a flood of emails and social media posts - all pointing to the fact that its the last day of autism acceptance month.
Does this mean that autism acceptance is not important for the remaining 11 months? 😔
An endless cycle of labels in autism
Targeted interventions for autism don't need creation of more new labels.
The issues that need help, were present there before the label creation and still exist years after the label.
In another 5-10 years, another new catchy trademarked label will appear
Last Class at Berkeley
This day 2 years ago.
OMG. My very last undergrad class at Berkeley.
Berkeley Haas Scholars at work.
Shoutout from FCAI on my NSF Award
The NSF GRFP is a tremendous achievement and a testament to Hari's hard work, dedication, and innovative research approach. As a neurodivergent individual, Hari brings a unique perspective to the field of Neuroscience, and his work, with its potential to make a significant impact on the lives of the community, is truly inspiring.
At the Frist Center for Autism and Innovation, we are committed to promoting neurodiversity and providing opportunities for individuals like Hari to flourish in science and engineering. We believe that neurodiversity is a strength, and we are proud to support Hari and other neurodivergent researchers in their quest to make a difference in the world.
On behalf of the Frist Center for Autism and Innovation, we would like to extend our heartfelt congratulations to Hari on this well-deserved honor. We are not just proud, but deeply appreciative of all that he has accomplished and look forward to seeing all the amazing things that he will achieve in the years to come. Hari is an inspiration to us all, and we are grateful to have him as a part of our community.
hashtag#Neurodiversity hashtag#Neurodivergence hashtag#ASD hashtag#Autism hashtag#Strength hashtag#SocialModel hashtag#NSF hashtag#GraduateStudent hashtag#Fellowship hashtag#NationalScienceFoundation hashtag#GraduateFellowship hashtag#Congratulations hashtag#Awards
A kinder ABA is a therapist driving you to the point of frustration, then offering to hold your hand
https://link.springer.com/article/10.1007/s40617-023-00833-w
Good grief is all I can say.
Adding the prefix of "Kind" to something does not automatically make anything automatically Kinder. As is peppering a paper with the word "Kind" to sublimely influence you that it must be kind.
And a sample size of 4 autistics in the study makes this a valid method, how?
And what did this "kind" translate to exactly. when a therapist drives you to the point of a tantrum in the first place, then offers to hold your hand, and saying "I can see you are frustrated."
Is this a new marketing strategy by the (massive-profits with no accountability) ABA industry to make even more profits of desperate families.
Please don't joke around with studies trying to whitewash stuff. This is not helping.
Disability puts a whole new light on access
https://www.dailycal.org/2018/04/05/access-ramp-volunteering
Role of Media in fostering inclusivity
Thoughts on the role of editors, journalists, publishers on fostering broader societal inclusivity
1. Irresponsible reporting: I absolutely am irritated by articles that to try to stir up old controversies or conspiracy theories trying to malign/discredit the most marginalized autistics, while pretending to be their champion. Its hypocritical and magazines should not be printing this stuff. In what way is this helping us. It's such a total waste of airtime, because the eye on the ball should move forward, towards progress and solutions so the marginalized can move forward.
2. Understanding 'Evidence-Based' in the context of Autism Heterogeneity: Blindly reporting that something is evidence based for autism is not helpful because practitioners and educators literally take that at face value, and do a blanket application for ALL of autism. In reality evidence based only applies to a small profile (discussed in my recent Time magazine article), which means Evidence Based Interventions have to be taken with spoonfuls of salt for the rest of autism.
Ergo, if "evidence based" does not work for an autistic, it's not the fault of the autistic for not progressing, it's a failure of research that has not found solutions for them.
Because the consequence for the autistic who does not improve with this evidence based stuff is extreme. They are basically written off and kept in special programs and group homes. And then we complain that this group is eating up resources and asking for attention.
3. Media needs to call out the Utter Lack of Action: An example is that GI issues were being discussed when I was diagnosed two and half decades ago. Earlier this year, there was an article which made it seem linking GI and autism was a brand new discovery. The sad part is that because there has been no movement in finding explanations and solutions on this front for two and half decades, it looks like it's a brand new issue when it's not.
4. Including a call to action. One magazine told me that I should not be including a call to action. Which kind of seemed counterintuitive because then these disability stories primarily become objects of pity and sympathy or inspiration porn. While this may increase readership, they don’t do anything to help us. We want the story to generate action because action is the actual impact.
Autism and the Cocktail Party Effect
Concepts in Multisensory Integration
The "cocktail party effect" refers to the brain's ability to focus one's auditory attention on a particular stimulus while filtering out a range of other stimuli, as when a person can focus on a single conversation in a noisy environment. This ability involves the auditory cortex and other brain regions that manage attention. The term was coined by cognitive scientist Colin Cherry in the 1950s.
For example, at a busy party with multiple conversations happening simultaneously, you are able to listen and respond to one person speaking to you without being distracted by the surrounding noise. This phenomenon highlights our ability to selectively attend to particular sounds in a complex auditory landscape. It's often studied in contexts involving hearing, neuroscience, and psychology, particularly in understanding how attention and the sensory system interact.
In autistics, the cocktail party effect may manifest differently due to variations in auditory processing and attentional focus. Autistics often experience atypical auditory processing, which can mean that separating speech from background noise is more challenging. This difficulty is sometimes referred to as auditory filtering problems with "auditory scene analysis." Research suggests autistic children show diminished performance in tasks requiring them to attend to speech in noisy environments compared to their neurotypical peers (Alcántara et al., 2004). This can contribute to the sensory overload many autistic individuals report in noisy or crowded settings.
These auditory processing differences are an essential consideration in understanding the sensory experiences of autistic individuals and underscore the need for tailored strategies in educational, social, and occupational settings to accommodate their unique sensory profiles.
The "cocktail party effect" refers to the brain's ability to focus one's auditory attention on a particular stimulus while filtering out a range of other stimuli, as when a person can focus on a single conversation in a noisy environment. This ability involves the auditory cortex and other brain regions that manage attention. The term was coined by cognitive scientist Colin Cherry in the 1950s.
For example, at a busy party with multiple conversations happening simultaneously, you are able to listen and respond to one person speaking to you without being distracted by the surrounding noise. This phenomenon highlights our ability to selectively attend to particular sounds in a complex auditory landscape. It's often studied in contexts involving hearing, neuroscience, and psychology, particularly in understanding how attention and the sensory system interact.
In autistics, the cocktail party effect may manifest differently due to variations in auditory processing and attentional focus. Autistics often experience atypical auditory processing, which can mean that separating speech from background noise is more challenging. This difficulty is sometimes referred to as auditory filtering problems with "auditory scene analysis." Research suggests autistic children show diminished performance in tasks requiring them to attend to speech in noisy environments compared to their neurotypical peers (Alcántara et al., 2004). This can contribute to the sensory overload many autistic individuals report in noisy or crowded settings.
The brain regions involved in auditory processing might function differently in autism, affecting how sounds are perceived and processed (O'Connor, 2012) . The auditory cortex may not effectively differentiate between foreground and background noises, leading to a potential overwhelming influx of auditory information. Consequently, this can make social interactions and communication more strenuous in environments that NTs might find manageable.
These auditory processing differences are an essential consideration in understanding the sensory experiences of autistic individuals and underscore the need for tailored strategies in educational, social, and occupational settings to accommodate their unique sensory profiles.
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Versions of this article: Academic/Scientific Audience and PlainSpeak for Lay Reader
Articles on other topics in #PlainSpeak
Autism Space seen as profit making space by Private Equity
Autism Space seen as profit making space by Private Equity
This is a continuing and troubling trend in autism.
'...private equity investments per year tripled or quadrupled from 2018 to 2021 compared to 2015.
...expected investment to continue at breakneck speed
“...They needed to start showing profits and revenue that match their valuation. … So at some point, [investors] need to start seeing a return on their investment,”
...autism therapy space could be at the point of the investment life cycle where investors are pressuring operators to shift from scale to efficiency and profitability.
...opening clinics that reach targeted patients while being “financially healthy,” Marsh said.
Neurodiversity Nuts and Bolts
Neurodiversity is a concept that views neurological differences as natural and valuable variations of human diversity.
Inclusion and Exclusion in the Neurodiversity Paradigm
Neurodiversity primarily includes disabilities like autism, ADHD, dyslexia, dyspraxia, and Tourette syndrome, along with disabilities that are labeled psychiatric in nature . It tends to focus on conditions that affect cognition, communication, sensory perception, and behavior. Disabilities that are less often included in discussions of neurodiversity include those that are purely medical in nature or those that do not involve differences in neurodevelopment, such as physical disabilities like spinal cord injuries or muscular dystrophy.
Neurodiversity as a Social Construct
Neurodiversity is a social construct, meaning it is a concept that society has created and accepted to understand neurological differences in a positive light. This does not imply that neurodiverse conditions themselves are not real; rather, it highlights how society chooses to value these conditions. As a social construct, neurodiversity is useful in promoting a more inclusive view of humanity, valuing diverse ways of thinking and interacting with the world. However, like all social constructs, its impact depends on how it is applied and in what context.Origins and Evolution of the Concept
While neurodiversity is often attributed to Judy Singer, who discussed it in a 1999 book chapter, recent research clarifies that the concept was a collective effort by many autistic activists during the 1990s. As highlighted in the 2024 paper "Neurodiversity Misattribution," the theory of neurodiversity emerged from discussions and activism within the autistic community, particularly on the "Independent Living" email list in the mid-1990s. These discussions were part of a broader movement of autistic self-advocates who aimed to shift societal perceptions and promote understanding and acceptance of neurological diversity. Correct attribution is important because it acknowledges the grassroots nature of the neurodiversity movement and the contributions of many individuals who worked to develop and promote the concept.The concept of neurodiversity builds upon the foundation laid by the broader disability rights movement, which advocates for the inclusion and acceptance of people with disabilities as full members of society. This movement, which began gaining momentum in the 1960s and 1970s, challenges societal barriers and attitudes that limit the participation of disabled individuals and promotes the rights of disabled people to be fully included in all aspects of society.
The benefits of a Neurodiversity Perspective
The neurodiversity perspective draws upon important ideas from the wider disability rights movement, particularly its emphasis on inclusion, empowerment, and a strengths-based approach to understanding differences. These include.
Education and Employment: Neurodiversity promotes practices that accommodate diverse learning/work styles and neurological profiles, aligning with the broader disability rights movement's advocacy for adapting educational/workspace environment to meet the needs of all individuals rather than enforcing a uniform model.
Acceptance and Inclusion: By encouraging acceptance of diverse ways of thinking and behaving, the neurodiversity perspective helps reduce stigma and discrimination against neurodiverse individuals.
Strengths-Based Approach: By emphasizing the strengths and abilities of neurodiverse individuals, neurodiversity highlights unique talents, such as exceptional attention to detail or innovative problem-solving skills.
Empowerment: Through advocating for accommodations and changes in societal structures, neurodiverse individuals are empowered to participate fully in society, promoting a sense of belonging and inclusion.
Despite its positive aspects, the concept of neurodiversity has faced several criticisms and controversies:
The Social Model of Disability: Focuses on societal barriers rather than individual impairment, positing that disability is caused by the way society is organized, rather than by a person’s impairment or difference. It emphasizes the need to remove barriers in society—whether physical, attitudinal, or systemic—to enable full participation and inclusion of disabled people.
The Human Rights Model of Disability: Rooted in international human rights law, such as the United Nations Convention on the Rights of Persons with Disabilities (CRPD), this model emphasizes the rights of disabled people to full inclusion, participation, and equality in all aspects of society. It advocates for societal change to eliminate discrimination and barriers.
Crip Theory: Challenges normative ideas of what it means to be "able" or "disabled," questioning societal norms about ability and disability, much like neurodiversity challenges norms about neurological functioning. Crip theory advocates for a more expansive understanding of diversity that includes all forms of bodily and neurological variation.
Disability Justice Framework: Expands on the disability rights movement by incorporating an intersectional approach, recognizing the interconnectedness of ableism with other forms of oppression such as racism, sexism, and heteronormativity. Disability justice highlights a commitment to recognizing and valuing diverse identities and experiences, advocating for a holistic approach that respects each individual's humanity and complexity.
Deaf Gain: Rather than viewing deafness as a loss or deficit, the concept of Deaf Gain frames it as a unique and valuable way of being in the world. This perspective highlights the benefits and cultural richness of the Deaf community, challenging societal assumptions about hearing and encouraging the appreciation of Deaf culture, language, and experiences.
Cultural and Linguistic Identity Models: Often used within Deaf and disability communities, these models emphasize the importance of cultural and linguistic identity as central to a person’s experience. They recognize that identity and culture, including communication styles and sensory experiences, are integral to the person and should be respected and valued as such.
Social Constructivist Approaches: Emphasize that many of the limitations experienced by disabled individuals are socially constructed rather than inherent to the individual. In disability studies, social constructivism explores how societal attitudes, policies, and environments create barriers to participation and inclusion.
Inclusive Research Paradigms: Prioritize the involvement of disabled people as active contributors or leaders in research that affects their lives. This contrasts with traditional research models that often exclude disabled people from meaningful participation. Inclusive research values the lived experiences of disabled individuals and ensures that their voices are central to research and policy development.
Nothing About Us Without Us: This principle, which originated from the disability rights movement, asserts that decisions affecting disabled people should not be made without their input and involvement. It advocates for the inclusion and leadership of disabled individuals in all matters that concern them, ensuring that their voices are heard and respected.
Relational Autonomy: Recognizes that autonomy and decision-making are often supported and facilitated through relationships with others, rather than being purely individualistic. In the context of neurodiversity, relational autonomy acknowledges that neurodivergent individuals may rely on supportive relationships to navigate social and systemic challenges while still maintaining control over their decisions and lives.
Essentially, while Neurodiversity has its criticisms and limitations, a neurodiversity perspective plays a crucial role in promoting acceptance and understanding of neurodiverse individuals in society. The alignment of neurodiversity with other constructs from the disability rights world underscores its importance in challenging societal norms and fostering a more inclusive and equitable world for all.
Acceptance and Inclusion: By encouraging acceptance of diverse ways of thinking and behaving, the neurodiversity perspective helps reduce stigma and discrimination against neurodiverse individuals.
Strengths-Based Approach: By emphasizing the strengths and abilities of neurodiverse individuals, neurodiversity highlights unique talents, such as exceptional attention to detail or innovative problem-solving skills.
Empowerment: Through advocating for accommodations and changes in societal structures, neurodiverse individuals are empowered to participate fully in society, promoting a sense of belonging and inclusion.
Criticisms and Controversies
Despite its positive aspects, the concept of neurodiversity has faced several criticisms and controversies:
Exclusion of the more-disabled individuals: Early discussions and formulations of the neurodiversity movement often focused on individuals who could advocate for themselves. This focus led to criticism that the movement did not fully address the experiences of those with more severe disabilities who might not be able to participate in self-advocacy in the same way. Over time, there has been an ongoing dialogue within the neurodiversity movement regarding the inclusion of individuals with more severe disabilities. Some advocates have pushed for a broader understanding that includes those with higher support needs, ensuring that neurodiversity represents a spectrum that encompasses all forms of neurological differences, regardless of the level of disability or support required.
Minimization of Challenges: Some argue that while the neurodiversity framework is empowering, it may inadvertently minimize the real challenges and needs that some neurodiverse individuals face, such as co-occurring conditions or the need for specific support and interventions.
Over-Romanticization: There is a concern that neurodiversity sometimes over-romanticizes neurological differences, ignoring the fact that for some, these differences can lead to significant difficulties that impacts their daily living.
Mad Pride Movement: Challenges traditional views of mental health and psychiatric conditions, advocating for the rights and dignity of individuals with lived experiences of mental health conditions. It seeks to reclaim terms like "madness" and emphasize the value of diverse mental experiences, pushing against the stigma and discrimination faced by those with psychiatric disabilities.
Minimization of Challenges: Some argue that while the neurodiversity framework is empowering, it may inadvertently minimize the real challenges and needs that some neurodiverse individuals face, such as co-occurring conditions or the need for specific support and interventions.
Over-Romanticization: There is a concern that neurodiversity sometimes over-romanticizes neurological differences, ignoring the fact that for some, these differences can lead to significant difficulties that impacts their daily living.
Research on Neurodiversity
Research on neurodiversity spans a range of disciplines, including psychology, education, sociology, and neuroscience. The purpose of this research is to better understand the experiences and needs of neurodiverse individuals, to develop more inclusive educational and workplace practices, and to challenge existing paradigms that may not fully accommodate neurological diversity.Other Disability Constructs that Neurodiversity aligns with.
Neurodiversity aligns with numerous other constructs in the broader disability world. Together, these constructs contribute to a broader understanding of diversity and challenge societal norms that marginalize disabled and neurodivergent people:Mad Pride Movement: Challenges traditional views of mental health and psychiatric conditions, advocating for the rights and dignity of individuals with lived experiences of mental health conditions. It seeks to reclaim terms like "madness" and emphasize the value of diverse mental experiences, pushing against the stigma and discrimination faced by those with psychiatric disabilities.
In fact the name of the unique makerspace disability lab at UC Berkeley is "Rad Mad Disability Lab". It was a privilege for me to lead Team Propaganda during my years at that lab.
The Social Model of Disability: Focuses on societal barriers rather than individual impairment, positing that disability is caused by the way society is organized, rather than by a person’s impairment or difference. It emphasizes the need to remove barriers in society—whether physical, attitudinal, or systemic—to enable full participation and inclusion of disabled people.
The Human Rights Model of Disability: Rooted in international human rights law, such as the United Nations Convention on the Rights of Persons with Disabilities (CRPD), this model emphasizes the rights of disabled people to full inclusion, participation, and equality in all aspects of society. It advocates for societal change to eliminate discrimination and barriers.
"Disability only becomes a tragedy when society fails to provide the things needed to lead one's daily life." - Judy Heumann (Disability Rights Activist)
I was also fortunate enough to work on creating ~40 case studies on low resource countries that have implemented the UNCRPD, as a research associate at Prof Victor Pineda's "World Enabled"
Crip Theory: Challenges normative ideas of what it means to be "able" or "disabled," questioning societal norms about ability and disability, much like neurodiversity challenges norms about neurological functioning. Crip theory advocates for a more expansive understanding of diversity that includes all forms of bodily and neurological variation.
Disability Justice Framework: Expands on the disability rights movement by incorporating an intersectional approach, recognizing the interconnectedness of ableism with other forms of oppression such as racism, sexism, and heteronormativity. Disability justice highlights a commitment to recognizing and valuing diverse identities and experiences, advocating for a holistic approach that respects each individual's humanity and complexity.
Deaf Gain: Rather than viewing deafness as a loss or deficit, the concept of Deaf Gain frames it as a unique and valuable way of being in the world. This perspective highlights the benefits and cultural richness of the Deaf community, challenging societal assumptions about hearing and encouraging the appreciation of Deaf culture, language, and experiences.
Cultural and Linguistic Identity Models: Often used within Deaf and disability communities, these models emphasize the importance of cultural and linguistic identity as central to a person’s experience. They recognize that identity and culture, including communication styles and sensory experiences, are integral to the person and should be respected and valued as such.
Social Constructivist Approaches: Emphasize that many of the limitations experienced by disabled individuals are socially constructed rather than inherent to the individual. In disability studies, social constructivism explores how societal attitudes, policies, and environments create barriers to participation and inclusion.
Inclusive Research Paradigms: Prioritize the involvement of disabled people as active contributors or leaders in research that affects their lives. This contrasts with traditional research models that often exclude disabled people from meaningful participation. Inclusive research values the lived experiences of disabled individuals and ensures that their voices are central to research and policy development.
Nothing About Us Without Us: This principle, which originated from the disability rights movement, asserts that decisions affecting disabled people should not be made without their input and involvement. It advocates for the inclusion and leadership of disabled individuals in all matters that concern them, ensuring that their voices are heard and respected.
Relational Autonomy: Recognizes that autonomy and decision-making are often supported and facilitated through relationships with others, rather than being purely individualistic. In the context of neurodiversity, relational autonomy acknowledges that neurodivergent individuals may rely on supportive relationships to navigate social and systemic challenges while still maintaining control over their decisions and lives.
Essentially, while Neurodiversity has its criticisms and limitations, a neurodiversity perspective plays a crucial role in promoting acceptance and understanding of neurodiverse individuals in society. The alignment of neurodiversity with other constructs from the disability rights world underscores its importance in challenging societal norms and fostering a more inclusive and equitable world for all.
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