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.
Sensory and Motor Challenges in Autism, ADHD, and AuDHD
Sensory and Motor Challenges in Autism, ADHD, and AuDHD
Autism and ADHD each bring unique sensory and motor challenges, but when they co-occur in the form of the combined diagnosis of AuDHD (Autism and ADHD), these difficulties become more complex and intertwined. Sensory processing and motor coordination are integral to navigating daily life, and disruptions in these areas can affect everything from focus and comfort to physical activity and social interactions. Understanding the nuances of sensory and motor challenges in autism, ADHD, and AuDHD offers valuable insights into how individuals with this combined diagnosis (AutDers)experience the world.
Sensory Processing in Autism and ADHD
Both autism and ADHD present distinct sensory processing challenges, but they manifest in different ways.
Autism: Sensory Sensitivities and Overload
Autistic individuals frequently experience heightened sensitivity to sensory stimuli. This can make ordinary environments, like busy streets or noisy classrooms, overwhelming.
Hypersensitivity: Autistics may find certain stimuli, such as bright lights, loud noises, or specific textures, overwhelming or even painful. Sensory overload is a common occurrence, leading to meltdowns, anxiety, or the need to withdraw from overstimulating environments.
Difficulty with Sensory Modulation: Autistics often struggle with modulating their responses to sensory input. Even minor changes in their sensory environment can provoke strong reactions, like a startle response or a need to leave the space immediately to calm down.
ADHD: Sensory Seeking and Distractibility
In ADHD, sensory processing challenges often manifest in the opposite direction, with individuals seeking out sensory input to maintain attention.
Sensory Seeking: ADHDers engage in behaviors to increase sensory stimulation. This might involve fidgeting, tapping, doodling, or moving around constantly to help regulate focus and engagement with tasks.
Distractibility: ADHD is also associated with difficulty filtering out irrelevant sensory input. In noisy or visually stimulating environments, ADHDers may struggle to focus on tasks as their attention shifts rapidly between multiple sensory inputs.
Sensory Processing in AuDHD: Amplified and Varied
In AuDHD, sensory challenges become even more complex, combining the hypersensitivities of autism with ADHD’s craving for stimulation. This results in a dynamic and sometimes conflicting relationship with sensory input.
Sensory Hyper- and Hyposensitivity: Individuals with AuDHD (or AutDers)may fluctuate between being overwhelmed by sensory stimuli (autism) and actively seeking out more intense sensory input to maintain focus (ADHD). This creates a push-pull dynamic, where one day a noisy environment may be unbearable, and the next day, they might seek out a stimulating setting for focus.
Sensory Overload vs. Sensory Seeking: An AutDer might be overstimulated in a chaotic, noisy environment but feel distracted or restless in a quiet, low-stimulation setting. This unpredictable relationship with sensory input can make it difficult to regulate responses and maintain comfort throughout the day.
Motor Coordination in Autism and ADHD
Motor coordination issues are common in both autism and ADHD, but the manifestations are distinct for each condition.
Autism: Repetitive Movements and Dyspraxia
In autism, motor challenges often manifest through repetitive behaviors and difficulty with motor planning.
Stimming: Autistic individuals frequently engage in repetitive movements like hand-flapping, rocking, or spinning (known as stimming). These behaviors help manage sensory input or emotional regulation and can serve as self-soothing mechanisms.
Dyspraxia: Many autistic individuals experience motor planning difficulties, known as dyspraxia. This can affect tasks that require fine motor skills, like handwriting or using utensils, as well as gross motor skills, such as running or jumping. This lack of coordination can lead to frustration or a reluctance to engage in physical activities.
ADHD: Restlessness and Impulsivity
Motor challenges in ADHD are often characterized by a need for constant movement and impulsive actions.
Motor Restlessness: ADHDers often feel the need to move constantly, whether it’s tapping their feet, pacing, or fidgeting. This restlessness helps them stay engaged but can become disruptive in environments that require stillness or focus, like classrooms or meetings.
Impulsive Movements: ADHD can also lead to impulsive, poorly timed movements, such as acting without thinking through the consequences. This may result in accidents or difficulty executing tasks that require careful motor planning, like playing sports or handling delicate objects.
Motor Challenges in AuDHD: Coordination and Regulation
When autism and ADHD co-occur in AuDHD, motor challenges can be exacerbated, blending the traits of both conditions into a complex pattern of movement and coordination difficulties.
Increased Stimming and Restlessness: AutDers may find that their need for repetitive movements (stimming) increases due to ADHD’s impulsivity and restlessness. While stimming can help regulate sensory input and focus, it can also interfere with tasks that require stillness or sustained concentration, such as schoolwork or meetings.
Motor Coordination Issues: Tasks that require both fine and gross motor coordination, like handwriting or playing sports, may be especially difficult for AutDers
. Autism’s motor planning challenges combine with ADHD’s impulsive and poorly timed movements, leading to clumsiness, accidents, or difficulty completing activities that require precision.
Balance and Spatial Awareness: Vestibular processing issues in AuDHD may also affect balance and spatial awareness. This can make it harder for individuals to maintain steady footing, avoid obstacles, or participate in physical activities that require coordinated movement, such as dancing or playing sports.
Sensory-Motor Synchrony and Feedback Loops
Tasks that require integrating sensory input with motor responses, like playing catch or cooking, can be particularly difficult for those with AuDHD.
Sensory-Motor Coordination
Individuals with AuDHD may struggle with tasks that require them to coordinate sensory input with motor responses. Autism’s delayed sensory processing may make it harder to time movements accurately, while ADHD’s impulsivity can cause poorly timed actions.
- Timing and Coordination Issues: For instance, catching a ball might be difficult because the individual can’t synchronize their visual and motor systems quickly enough, or they might act impulsively and miss the catch. These difficulties can extend to daily tasks like cooking, where multiple sensory inputs (sight, smell, touch) need to be integrated for successful task completion.
Sensory-Motor Feedback Loops
Sensory-motor feedback—the brain’s ability to judge how the body interacts with its environment—may also be impaired in AuDHD.
- Misjudging Force and Space: AutDers may misjudge how much force is needed for tasks, like gripping objects too tightly or too loosely, leading to accidents. They may also struggle with spatial awareness, frequently bumping into objects or people. These difficulties can lead to frustration and a sense of clumsiness, especially in social or physical activities.
Additional Sensory and Motor Issues in AuDHD
The combination of autism and ADHD introduces several more nuanced sensory and motor issues that are worth noting.
Difficulty with Sensory Modulation
Individuals with AuDHD may have fluctuating abilities to regulate sensory input. Some days they might be able to tolerate sensory stimuli that overwhelm them on other days. This inconsistency can make sensory regulation unpredictable and lead to confusion about what environments or stimuli will be manageable.
- Overstimulation Followed by Seeking More Input: After experiencing sensory overload, instead of needing rest or withdrawal (as is common in autism), AutDers might feel compelled to seek more sensory input due to ADHD’s craving for stimulation. This can create a confusing pattern of seeking and avoiding sensory experiences.
Fatigue from Sensory-Motor Efforts
Managing sensory overload, stimming, and motor coordination issues can be physically exhausting for individuals with AuDHD.
Sensory Exhaustion Coupled with Restlessness: Sensory overload is tiring for anyone, but in AuDHD, the need to move (due to ADHD) can persist even when the body is exhausted. This can lead to burnout or physical fatigue, as the individual’s body is pushed beyond its limits without sufficient rest.
Cognitive Fatigue: The constant effort required to process sensory inputs and manage motor movements can lead to cognitive fatigue. This might manifest as irritability, difficulty concentrating, or emotional dysregulation, especially after extended periods of sensory-motor effort.
Impact on Learning and Daily Activities
Sensory and motor challenges can significantly affect learning, daily tasks, and social interactions for those with AuDHD.
Learning Challenges: In academic environments, AutDers may struggle with activities that require fine motor skills (e.g., writing, using school supplies) or tasks that involve sensory processing (e.g., focusing in noisy classrooms). The combination of sensory sensitivities and motor difficulties can affect confidence and participation in both academic and social settings.
Daily Living Skills: Everyday tasks like cooking, cleaning, and self-care can become overwhelming due to the sensory and motor challenges in AuDHD. Sensory overload might make it difficult to shop for groceries, while motor coordination issues can make tasks like brushing teeth or preparing meals exhausting.
in essence...
The sensory and motor challenges of AuDHD are intricate, multifaceted, and unique. AutDers often face conflicting sensory needs—balancing between hypersensitivity and the craving for stimulation—alongside motor coordination issues that affect both fine and gross motor skills. These challenges can lead to frustration, fatigue, and difficulty navigating daily tasks, learning, or physical activities.
Neurodiversity Misattribution
https://journals.sagepub.com/doi/full/10.1177/13623613241237871
While neurodiversity is popularly attributed to Judy Singer, it was in fact a collective effort of many autistic activists in the 1990s. A correct in attribution is overdue.
"For some time, the coinage and theorizing of the concept of ‘neurodiversity’ has been attributed to Judy Singer. While Singer published one early book chapter on the neurodiversity movement in 1999, she was only one of many working on theorising neurodiversity, and certainly not the first. In fact... ‘neurological diversity’ or ‘neurodiversity’ concept – and body of theory surrounding it – was collectively theorised and developed by autistic activists, primarily in the autistic community email list Independent Living in the mid-1990s. While much of this earlier theorising, and that which followed, has been lost due to being on now defunct emails lists, forums, blogs, and so on, in our view, it is important to clarify the multiple origins of the concept. This allows us to correctly show that neurodiversity theory arose and was developed collectively among autistic activist communities, rather than originating with any individual"
Its like the way I had attributed "inspiration porn" to Stella Young, who had used it a Ted Talk and thus popularized it. But the term was coined by comedian Maysoon Zayid. Thanks to disability rights activist, Rebecca Cokley who knows both was nice enough to correct the attribution.
While neurodiversity is popularly attributed to Judy Singer, it was in fact a collective effort of many autistic activists in the 1990s. A correct in attribution is overdue.
"For some time, the coinage and theorizing of the concept of ‘neurodiversity’ has been attributed to Judy Singer. While Singer published one early book chapter on the neurodiversity movement in 1999, she was only one of many working on theorising neurodiversity, and certainly not the first. In fact... ‘neurological diversity’ or ‘neurodiversity’ concept – and body of theory surrounding it – was collectively theorised and developed by autistic activists, primarily in the autistic community email list Independent Living in the mid-1990s. While much of this earlier theorising, and that which followed, has been lost due to being on now defunct emails lists, forums, blogs, and so on, in our view, it is important to clarify the multiple origins of the concept. This allows us to correctly show that neurodiversity theory arose and was developed collectively among autistic activist communities, rather than originating with any individual"
Its like the way I had attributed "inspiration porn" to Stella Young, who had used it a Ted Talk and thus popularized it. But the term was coined by comedian Maysoon Zayid. Thanks to disability rights activist, Rebecca Cokley who knows both was nice enough to correct the attribution.
Interoception and Autism
Interoception refers to the perception and awareness of internal bodily states. It involves the ability to sense and interpret physiological signals originating from within the body, such as hunger, thirst, heartbeat, temperature, respiration, and the need for bodily functions. Interoception is crucial for maintaining homeostasis and overall well-being as it allows an individual to respond appropriately to bodily needs and emotional states. This internal sensory system plays a significant role in emotional experiences and self-regulation by linking physical sensations with emotional responses.
Relevance to Autism
For example, interoceptive awareness includes the ability to feel a racing heartbeat when anxious or to recognize a sensation of fullness to prevent overeating. In autism, this sense may be heightened or diminished, leading to unique challenges such as difficulty in identifying states of discomfort or illness, or misinterpreting signals of emotional changes which are critical in social interactions and personal health management. Moreover, the role of interoception in autism extends to fundamental daily activities; it influences everything from toilet training—where recognizing the need to urinate can be delayed or unclear—to managing anxiety and stress levels in response to overstimulation or environmental changes. These distinct interoceptive experiences can significantly affect how individuals with autism recognize and communicate their needs and emotions, thus requiring tailored strategies that address these sensory processing differences to enhance their quality of life and autonomy."
TedX
It was a such an honor and privilege to get the opportunity to give a TedX Talk.
This is the recording of my TedX Talk: https://www.
News coverage of the event by the Frist Center.
In the spirit of spreading ideas, TEDx is a program that brings people together to share a TED-like experience. At a TEDx event, live speakers and TEDTalks videos combine to spark profound conversations and connections in a small group.
The upcoming TEDxFolsom High School Youth event promises to be an inspiring experience. The speakers are prepared to unleash their inner selves, share their stories and emotions, and spread the one idea everybody has been waiting for. They aim to bring change to the community and show their spark to the world. The event will allow high school students to stand alongside adults and unleash their hidden power.
One of these speakers will be FCAI’s own Hari Srinivasan, Neurodiversity Inspired Science and Engineering Fellow. This event is open to the public, and tickets are available here.
Apr 20, 2024 (In-Person) in Folsom, CA
TedX Event: https://www.ted.com/tedx/events/56378
Tickets: https://tedxfolsomhighschoolyouth.ludus.com/index.php
Hari Srinivasan: "Pebbles in the Pond of Change"
TedX Event: https://www.ted.com/tedx/events/56378
Tickets: https://tedxfolsomhighschoolyouth.ludus.com/index.php
Hari Srinivasan: "Pebbles in the Pond of Change"
FCAI would like to congratulate Hari Srinivasan on his recent keynote address an the Duke Center for Autism and Brain Development
Reclaiming "Person with Autism"
I'm reclaiming the use of "person with autism" and am not offended by it. It is part of who I am.
When you reclaim language as a positive, it cannot be used against you. Others lose the power to use it as a negative against you.
I am both 'autistic' and a 'person with autism'
IFL v PFL
Identify First Language (Autistic/ disabled) v Person-First Language (Person with Autism, Person with Disability)
Seriously, with the amount of airtime spent on this topic, one would think this is the only and primary issue facing autism. Can we move on already and just accept both. We have SO MANY CRITICAL ISSUE TO FOCUS ON and this is not one of them.
Let me remind you, person-first-language was literally the language of the disability rights movement (DRM). Without that, none of us can even move about in society. All our legislation uses this language
- Americans with Disabilities Act
- Individuals with Disabilities Education Act
- United Nations Conference on Rights for Persons with Disabilities (UNCRPD)
These laws were meant to uplift us. So how can "person with autism" be degrading?
I was told that this was projects fragmentation, a separation of our autism from our human self. In fact if that is even possible, there are aspects of my 'undesirable parts of autism" that I would very much like to distance from, if that is even possible - like my behavioral challenges, mood swings, my OCD, my health issues. So that argument does not fly because I can't even separate those even if I want. So why are we having these circular arguments.
And if we think something is undesirable, instead of fighting it, let's take control of the narrative, let's own it, let's rebrand and repurpose it. When you reclaim language as a positive, it cannot be used against you. Others lose the power to use it as a negative against you.
The wheelchair user community have done this already - they have turned "cripple" into the very positive "crip" (Krip Hop, Crip Camp the Oscar nominated movie). That is such a BRILLIANT move and I am in deep admiration. I've heard one of my disabled professors, Dr Victor Pineda, being referred to as a "super-crip" by Stuart James (Exec Director of Berkeley Center for Independent Living) and I thought that term was so super cool.
Autism was a latecomer to the DRM and we adopted IFL later as well.
If a person wants to use IFL, that's fine too.
If a person want to continue using PFL that's fine too.
I would say let's use and encourage both.
Why is this important?
A few years back there was an NYT article that suggested re-introducing state run institutions. I think you will agree that institutions is "BAD" on so many levels - negates the entire DRM efforts which fought to get people out of institutions. There was a twitter storm over the article. But the criticism was NOT about INSTITUTIONS, but rather over the fact of "person with autism" used in the article.
How is "person with autism" more important than re-introduction of institutions?
What is this obsession of the autism community with a narrow focus on this one little issue of person-first over everything else. Our priorities are SO MESSED UP.
I understand that people can have preferences but seriously it does not merit the amount of discussion time it currently gets.
LETS ENCOURAGE AND ACCEPT BOTH. Let's make both as positive for us, so we don't have to keep circling this one issue.
Lets' move onto the real issues in autism please.
I'm reclaiming the use of "person with autism" and am not offended by it. It is not diminishing who I am. I am both 'autistic' and a 'person with autism'
- by Hari who is both "Person with Autism" and "Autistic"
PS: Language usages
Brits say : I'm going to visit my friend"
Americans like to say: "I'm going to visit with my friend"
Did the additional "with" change the meaning.
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