Showing posts with label Autism. Show all posts
Showing posts with label Autism. Show all posts

 "Everyday moments of awe offer profound benefits to our mental health, enhancing personal well-being as well as a sense of belonging, at no expense. Unlike the price-gouging therapies we autistics are surrounded by since childhood, these experiences of awe are accessible and deeply meaningful." - Hari Srinivasan

Read on... https://www.liebertpub.com/doi/10.1089/aut.2024.38246.pw

Oddball Paradigms in Autism Research

Lexicon: Oddball Paradigms

Oddball trials, also known as oddball tasks or oddball paradigms, are a type of research experimental design used in cognitive and sensorimotor research. The oddball paradigm has been widely used in autism research to investigate sensory processing differences, attentional issues, and cognitive control. During an oddball task, researchers typically measure various physiological and behavioral responses, such as reaction times, accuracy rates, ERPs (via EEG) or fMRI (to examine neural activity patterns).

The oddball paradigm typically consists of two types of stimuli and participants are asked to detect and respond to the oddball.

  • Standard Stimuli: These are the most common stimuli presented in the sequence and serve as the baseline / control stimuli, occurring with higher frequency. Participants are generally instructed to ignore standard stimuli and withhold any response to them
  • Target Stimuli: These are the less frequent or "oddball" stimuli that differ in some way from the standard stimuli. The target stimuli can be defined by various characteristics, such as a different color, shape, sound, or any other perceptual feature.

The purpose of oddball trials is to investigate how the brain processes and detects rare or deviant stimuli amidst a background of more common stimuli. By manipulating the frequency and characteristics of the target and standard stimuli, researchers can examine various aspects of cognitive processing, including
  • Attention: how participants allocate and sustain their attention to detect infrequent target stimuli. It allows researchers to explore the mechanisms of selective attention, attentional capture, and the ability to filter out irrelevant information.
  • Perception & perceptual processing: how the brain discriminates between different stimuli; how the brain detects and discriminates deviant stimuli based on sensory features, and how it forms representations and expectations about the environment
  • Memory and Cognitive Control: Participants may be required to remember the occurrence or characteristics of the target stimuli and maintain this information for subsequent recall or recognition. Also sheds light on cognitive control processes, such as response inhibition and response selection when distinguishing between standard and target stimuli.

Oddball Paradigms in Autism Research

Oddball paradigms in autism research, offer a window into the sensory processing differences, attentional mechanisms, and cognitive control capabilities.

  1. Sensory Processing Differences: One of the core areas of investigation in autism is sensory processing as autistics often exhibit atypical responses to sensory stimuli, which can range from heightened sensitivity to specific stimuli to a diminished response to others. Oddball paradigms help researchers understand these sensory anomalies by comparing how autistics detect and respond to infrequent target stimuli compared to neurotypical controls. This can reveal whether there is an enhanced perceptual sensitivity or other unique patterns of sensory processing in autism.

  2. Attention and Attentional Allocation: Studies focus on how autistics sustain and allocate their attention when faced with rare target stimuli amidst a stream of more common stimuli. Findings often indicate differences in how attention is captured and maintained, which can be linked to broader attentional issues in autism. For instance, some research suggests autistics may focus more on local details rather than global features of stimuli (Weak Central Coherence theory)

  3. Cognitive Control and Inhibition: Cognitive control, including response inhibition and flexibility in shifting attention, is frequently assessed through oddball tasks. These tasks can highlight the executive functioning issues, such as challenges with inhibiting inappropriate responses or switching attention between different tasks or stimuli.

Key Findings from Autism Research

Research using oddball paradigms has provided several key insights into the neurocognitive characteristics of ASD:

  • Enhanced Perceptual Sensitivity: Some studies suggest that autistics may exhibit enhanced perceptual sensitivity, reacting more quickly or accurately to target stimuli than neurotypical individuals. This heightened sensitivity might be associated with an increased focus on specific features in the environment.

  • Atypical Neural Responses:  Differences in the amplitude and latency of ERP components, such as the P3 wave, which is linked to attentional processes and cognitive evaluation, have been noted (1).

  • Attentional Allocation Differences: The way individuals with autism allocate their attention during oddball tasks often differs from that of neurotypical individuals. This can include a tendency to focus more narrowly on specific stimuli aspects, potentially reflecting a unique attentional strategy or sensory processing style (2).

  • Cognitive Control Challenges: Oddball tasks also reveal cognitive control issues, such as difficulties with response inhibition and flexibility in attention shifting. These findings are consistent with broader patterns of executive dysfunction observed in autism (3).

References:

  1. Gomot, M., et al. (2008). Atypical auditory processing in children with autism: A cohort study with event-related potentials. Journal of Autism and Developmental Disorders, 38(7), 1307-1316.
  2. Sokhadze, E. M., et al. (2009). Atypical prefrontal cortex development in autism: ERP evidence of abnormal inhibitory control in a Go/NoGo task. Behavioral and Brain Functions, 5, 9.
  3. Hill, E. L. (2004). Executive dysfunction in autism: A review of the evidence for specific deficits. Developmental Psychopathology, 16(3), 377-401.

Do you grow out of autism?

 The understanding of autism has come full circle—from Kanner’s original view that it is a lifelong condition, to the mid-century belief that it was something you might grow out of, and now back to recognizing autism as a spectrum of experiences that continue into adulthood. This evolving perspective has profound implications for how we support and accommodate autistics at every stage of life.

Kanner’s Early View: Autism as a Lifelong Condition

In 1943, child psychiatrist Leo Kanner published his groundbreaking paper on autism, describing it as a rare but distinct developmental disorder. He identified autism as a condition that appeared from early infancy and persisted throughout life, believing it to be innate. His observations of children with social difficulties, repetitive behaviors, and an “insistence on sameness” led him to conclude that these traits were deeply embedded and unlikely to disappear.

Kanner’s view of autism was revolutionary at the time, as he set autism apart from other mental health conditions. He noted that while some children might improve with intervention, autism itself was a lifelong condition. This perspective laid the foundation for early autism research and clinical practice.

The Shift: Autism as a Childhood Disorder

By the mid-20th century, the focus on autism began to shift, and the condition came to be viewed more as a childhood disorder. Several factors contributed to this change:

  1. Lack of Longitudinal Data: In the early years of autism research, there was little long-term data on how autistic children fared into adulthood. Without follow-up studies to track their development, the focus remained on interventions aimed at children, especially those designed to improve communication and social skills. This narrow focus reinforced the belief that autism was primarily a childhood condition, and there was little understanding of how the condition evolved across the lifespan.

  2. Influence of Developmental Psychology: During the 1950s and 1960s, autism was studied within the context of developmental psychology, which emphasized stages of growth in children. Autism became viewed through the lens of early childhood development, which often led to the assumption that autistic children could “grow out of” the condition. The lack of focus on adult outcomes further entrenched the belief that autism was something that primarily affected children.

  3. Institutionalization and Societal Factors: A significant factor in the mid-century shift was the institutionalization of autistic individuals, especially those with more severe symptoms. During much of the 20th century, many autistic children were placed in institutions, often isolated from the community. This removed many autistic adults from public view (out of sight is out of mind) and contributed to the idea that autism was primarily a childhood disorder. Without tracking autistic individuals into adulthood, the misconception persisted that autism either diminished over time or became less visible as people aged.

  4. DSM-III and the Diagnostic Focus: The third edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-III), published in 1980, played a role in reinforcing the view of autism as a childhood condition. The DSM-III categorized autism as a disorder that first appeared in childhood, and it did not fully address how autism might manifest in adults. While this edition was important in standardizing the diagnosis, it contributed to the ongoing focus on childhood autism.

The Shift Back: Autism as a Lifelong Spectrum

In the late 20th century, research began to challenge the idea that autism was solely a childhood disorder. Several key developments led to the shift back to recognizing autism as a lifelong condition:

  1. Longitudinal Studies in the 1970s and 1980s: As researchers began following autistic individuals into adulthood, they found that many core features of autism—such as social and communication challenges—persisted throughout life. These studies demonstrated that while some individuals could develop coping strategies or improve in certain areas, autism did not simply go away with age. This long-term data challenged the earlier view that autism was something children could outgrow.

  2. Broader Recognition of the Autism Spectrum: The 1994 publication of the DSM-IV marked a turning point in how autism was understood. The DSM-IV expanded the definition of autism to include related conditions, such as Asperger syndrome and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). These changes reflected a growing awareness that autism manifested differently in individuals and affected people across the lifespan. The concept of an autism "spectrum" began to take hold, highlighting the diverse experiences of autistic individuals, including those who may have been overlooked in earlier childhood-focused models.

  3. Advocacy and Autistic Voices: The voices of autistic adults themselves began to play a key role in shifting the narrative. As more autistic individuals spoke about their experiences, it became clear that autism affected them well into adulthood, and they advocated for recognition, rights, and support that extended beyond childhood. This push for greater inclusion helped drive the shift toward understanding autism as a lifelong condition.

  4. DSM-5 and the Unified Spectrum: The publication of the DSM-5 in 2013 solidified the shift back to understanding autism as a lifelong condition. The DSM-5 introduced the term Autism Spectrum Disorder (ASD), which combined previous diagnoses under one umbrella. By viewing autism as a spectrum, the DSM-5 recognized that autism presents differently in individuals and persists across all stages of life. This marked a significant step toward integrating the idea that autism is not something one grows out of but a lifelong condition that requires ongoing understanding and support.

The Implications of a Lifelong Understanding

The return to understanding autism as a lifelong spectrum has profound implications for how society supports and accommodates autistic individuals. With this recognition, there is a growing focus on services that support autistic adults in areas such as employment, healthcare, and independent living. This shift also emphasizes the need for tailored support throughout different life stages, including transitions from school to work and aging as an autistic adult.

Additionally, this broader understanding allows for more research into the needs of autistic adults, including mental health, relationships, and aging. As society moves away from the childhood-only model of autism, there is greater awareness of the spectrum of experiences that autistic individuals face, and a commitment to supporting them throughout their lives.

In PlainSpeak: Plain Language for the Lay Reader

The understanding of autism has come full circle—from Kanner’s original view that it is a lifelong condition, to the mid-century belief that it was something you might grow out of, and now back to recognizing autism as a spectrum of experiences that continue into adulthood. This shift has significant implications for how we support and accommodate autistic individuals throughout their lives.

Kanner’s Early View: Autism as Lifelong

In 1943, Leo Kanner first described autism as a lifelong condition. He believed it appeared in early infancy and persisted into adulthood, noting traits like social challenges, repetitive behaviors, and a need for sameness. Kanner thought that while some children could improve with intervention, autism itself was unlikely to disappear.

The Shift to Autism as a Childhood Disorder

By the mid-20th century, autism came to be viewed primarily as a childhood disorder. Several factors contributed to this shift:

  • Lack of Longitudinal Data: Early research on autism didn’t track autistic individuals into adulthood, leading to the focus on childhood interventions. The lack of long-term studies contributed to the misconception that autism was a childhood condition.

  • Developmental Psychology Influence: Autism was often studied within childhood development models, reinforcing the idea that it was something children could potentially "grow out of" as they developed.

  • Institutionalization: Many autistic children were institutionalized, particularly those with severe symptoms. This removed autistic adults from public view, further reinforcing the idea that autism primarily affected children.

  • DSM-III (1980): The DSM-III reinforced autism as a childhood disorder, as it primarily focused on diagnosing autism in children and didn’t fully address how autism manifests in adults.

The Shift Back to Lifelong Understanding

By the 1970s and 1980s, research began to show that autism was not something individuals outgrew. Several developments led to the recognition of autism as a lifelong condition:

  • Longitudinal Studies: Research following autistic individuals into adulthood revealed that many core traits, such as social and communication challenges, persisted throughout life.

  • Broader Spectrum Recognition: The 1994 publication of the DSM-IV expanded the definition of autism to include related conditions like Asperger syndrome, acknowledging that autism manifests differently across the lifespan.

  • Autistic Advocacy: Autistic adults began advocating for recognition and support, making it clear that autism affects people well into adulthood, driving a push for lifelong understanding.

  • DSM-5 (2013): The DSM-5 introduced Autism Spectrum Disorder (ASD), recognizing that autism exists on a spectrum and persists across all life stages. This marked a formal acknowledgment that autism is not something people grow out of, but a lifelong condition requiring ongoing support.

Implications of a Lifelong Perspective

This shift back to viewing autism as lifelong has significant implications for how society supports autistic individuals. There is now a greater focus on providing services for autistic adults in areas like employment, healthcare, and independent living. As the understanding of autism grows, so does the commitment to supporting autistic individuals at every stage of life, ensuring that their needs are met not only in childhood but well into adulthood.

 My Ted X talk titled "Pebbles in the Pond of Change

Hari Srinivasan, shares a powerful message about the power of small actions in creating ever-widening ripples in the pond of change. Drawing from personal experiences and the legacy of disability rights leaders, he redefines progress as a journey that starts with simple, accessible steps. His inspiring message encourages everyone to identify and act on their own "small pebbles" to drive societal transformation.

 "When you say positive psychology in the context of autism, what comes to mind immediately is the image of people with autism thriving and flourishing, and moving beyond surviving. It boils down to that! We need to see real solutions that help autistics achieve a quality of life that goes beyond mere existence." - Hari Srinivasan 

Read on... https://www.liebertpub.com/doi/10.1089/aut.2024.38246.pw

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.

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

What missing is action towards actual solutions in the last 30 years.

 My Ted X talk titled "Pebbles in the Pond of Change

Hari Srinivasan, shares a powerful message about the power of small actions in creating ever-widening ripples in the pond of change. Drawing from personal experiences and the legacy of disability rights leaders, he redefines progress as a journey that starts with simple, accessible steps. His inspiring message encourages everyone to identify and act on their own "small pebbles" to drive societal transformation.

Who Autism Research Leaves Out

If genuine progress in autism research and the development of real solutions are to be achieved, we must expand the zone of the researchable autistic.
-Hari Srinivasan, Time


 

Finding solutions for the most marginalized

"There is very valuable insight that can be derived from the disability justice principles of Sins Invalid. This insight is that if we find solutions for the most marginalized members of a group, the entire group benefits. Just like elevators to help wheelchair users ended up benefiting everyone. " - Hari Srinivasan 

https://www.liebertpub.com/doi/10.1089/aut.2024.38246.pw

Disability and Multilingualism

Embracing multilingualism and disability inclusion means valuing and integrating these diverse forms of communication into our educational systems, workplaces, and communities.

Read Full Article at unesco.org...

 

Caught Between Tears and Stoicism

It’s a catch-22: If we don’t show emotion, we risk being labeled as "cold" or "unexpressive"; if we do, we might be seen as "overly emotional."

Read Full Article at


 

 My Ted X talk titled "Pebbles in the Pond of Change

Hari Srinivasan, shares a powerful message about the power of small actions in creating ever-widening ripples in the pond of change. Drawing from personal experiences and the legacy of disability rights leaders, he redefines progress as a journey that starts with simple, accessible steps. His inspiring message encourages everyone to identify and act on their own "small pebbles" to drive societal transformation.

How Reasonable are Reasonable Accommodations at Work

 

As we observe National Disability Employment Awareness Month in October, it is essential to create true equity for all autistic and neurodivergent workers by closing this loophole around the subjectivity of “reasonable accommodations

Disability and Multilingualism

Just as ramps and elevators, which were initially designed for wheelchair users, can aid travelers with suitcases and families with strollers, solutions that support those with significant support needs in the autism community can enhance accessibility and inclusion for all.

Read Full Article at unesco.org...

 

Oversampling

Just as psychology research had its WEIRD (“western, educated, industrialized, rich and democratic”) sampling bias, autism research has not only a WEIRD sampling bias, but also has essentially oversampled the same, narrow band of what are considered the easily “researchable autistics,” and expected those findings (as well as the applications and interventions that resulted from them) to apply to everyone.
-Hari Srinivasan, Time

Participant Selection Bias


"Research participant selection bias is especially problematic in... autism because research [not only] provides explanations [but] also influences policy priorities, interventions, treatments, who gets access to funding, access to spaces, and even societal attitudes. Most importantly, research leads us to applications and solutions."
-Hari Srinivasan, Time

Temporal ventriloquism


Temporal ventriloquism refers to the brain's ability to synchronize slightly misaligned visual and auditory inputs, which may work differently in autism, leading to challenges in processing multisensory information. 

PlainSpeak. In Plain Language for the Lay Reader

Temporal ventriloquism is when the brain adjusts sounds and visuals that don’t match up perfectly, making them seem like they happen together. In autism, this process might work differently, which can make it harder to handle mixed sensory information. 

[Read in more detail