Misunderstanding that autistics with higher support needs do not experience mental health issues.

"Accessibility and inclusivity of positive psychology interventions is limited across the spectrum, particularly for the most marginalized members… A critical misunderstanding that exemplifies these issues is the misconception that autistics with higher support needs do not experience mental health issues. This not only excludes a significant portion of the autistic population from mental health initiatives but also from the benefits that positive psychology can offer, highlighting the urgent need for more inclusive and accessible practices in this field." - Hari Srinivasan 

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

How Social Capital Can Empower Autistic Communities

In our interconnected world, the concept of "social capital" often comes up when discussing community well-being, networking, and social support. But what exactly is social capital, and what does it have to do with Autism? 

Social capital refers to the networks, relationships, and norms that facilitate cooperation and support among people within a community. It's about the trust, mutual understanding, and shared values that make it easier for people to work together and help each other out. Think of it as the "glue" that binds communities together, allowing them to function effectively and support their members.

Social capital can be broken down into three main types:

1. Bonding Social Capital: This involves strong ties between close-knit groups, like family members or close friends. It's the deep trust and support that comes from tight connections.

2. Bridging Social Capital: This type refers to connections between more diverse groups. For example, acquaintances from different backgrounds or communities who come together for a common purpose, like a local sports team or a neighborhood association.

3. Linking Social Capital: This is about relationships with institutions or people in positions of power, like schools, employers, or government agencies.

Social Capital and Autism

For autistics, social capital can have profound implications. Navigating social networks and building relationships can be more challenging due to differences in communication styles, sensory sensitivities, and social expectations. These differences can sometimes lead to social isolation, which can impact an autistic person’s access to social capital.

Challenges in Building Social Capital

Research suggests that autistics often have less access to social capital, and  autistic adults reported smaller social networks and fewer social supports. This limited social capital can affect various aspects of life, from employment opportunities to mental health and overall quality of life.

For many autistic people, traditional networking and social bonding activities can be stressful or inaccessible. Sensory overload in crowded environments, difficulties in interpreting social cues, or a lack of understanding from others can hinder the development of both bonding and bridging social capital.

The Importance of Inclusive Social Capital

However, social capital isn't just about quantity—it's also about quality and inclusivity. Building inclusive social capital means creating networks and communities where autistic individuals can thrive, contribute, and feel valued. It's about recognizing the unique strengths that autistic people bring to the table and ensuring that social networks are supportive and accommodating.

Inclusive practices, like sensory-friendly events, clear communication, and understanding different social needs, can help autistic individuals build meaningful relationships. Programs that promote autistic self-advocacy, mentorship, and peer support can also play a crucial role in enhancing social capital for autistic people.

For example, the Autistic Self Advocacy Network (ASAN) emphasizes the importance of self-advocacy and peer support to build strong, supportive communities for autistic individuals. These efforts help in creating a more inclusive form of social capital where autistic voices are heard and valued.

Building Bridges: Creating Supportive Networks

To improve social capital for autistic individuals, it's essential to focus on both bonding and bridging capital. Encouraging inclusive communities that celebrate neurodiversity and providing platforms for autistic people to connect with others can help build stronger, more diverse networks.

One way to foster bridging capital is through community programs that bring together autistic and non-autistic individuals in shared activities and interests. This could be anything from art classes to technology meetups, where people can bond over common hobbies and learn from each other's experiences.

Kasperski, R. and Blau, I., 2023. Can an online mentoring social network assist students with intellectual disabilities or autism in coping with special needs and accumulating social capital?. Education and Information Technologies, 28(5), pp.6027-6047.

Hostile Attribution Bias

Autism Lexicon: Hostile Attribution Bias 

Hostile attribution bias is a cognitive tendency to interpret ambiguous behaviors of others as having hostile intent or leading to hostile outcomes. In autism, this bias is linked to social communication challenges and a heightened sensitivity to perceived social threats. 

PlainSpeak:   Hostile attribution bias is when someone thinks others are being mean on purpose, even if it's not clear. In autism, this happens more often because autistic people can struggle with understanding social cues and might feel more easily threatened.

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Read more on Hostile Attribution Bias: [Version for Scientific/Academic Audience],  [PlainSpeak for the Lay Reader], [A Simple Definition]

Related Posts on [Neuroception], [Negative Attribution Bias] 

Who Autism Research Leaves Out

Read at https://time.com/6299599/autism-research-limited-essay/

I find that despite all the careers, promotions, and profits being made by thousands of autism-experts, the state of autism interventions right now is one hot mess. In reality, there still are no real “experts” in autism because there is no one-size fits all model.

-Hari Srinivasan, Time

 

The Cost of Ableism - A Higher Bar to Meet and Negative Attribution Bias.

Ableism isn't just about overt discrimination; it also involves the pervasive expectations and pressures that can lead to negative attribution biases and the need to meet a higher bar for inclusion. 

The High Bar for Inclusion

Ableism manifests as an expectation for individuals with disabilities, to meet a higher bar for inclusion. This form of ableism places undue pressure on autistic individuals to conform to standards and norms typically designed without considering their unique needs and strengths. 

Unreasonable Expectations. Autistics are often expected to conform to neurotypical social behaviors and communication styles to be accepted in social, educational, or professional settings. This higher bar for inclusion is exhausting and unrealistic, disregarding the natural ways in which autistic individuals interact and express themselves.

Proving Competence. There is often an implicit or explicit requirement for  autistics to constantly prove their abilities and competence beyond what is expected of their NT peers. So its not about having to prove yourself one time, its proving competence in every repeated interaction and with every new person and with every new situation.This can stem from prejudiced assumptions about their capabilities, leading to significant stress and anxiety.

Extra Effort for Accommodation:  The burden of seeking and arranging accommodations frequently falls on autistic individuals. They may need to expend significant effort to advocate for themselves, explain their needs repeatedly, and navigate systems not designed to accommodate them easily. Accommodations for autism can vary depending on the autistic and there is no standard list of checkbox to tick off and say job done.

Perceived Advantage of Accommodations. Accommodations are often seen as giving autistic individuals an "advantage," which perversely leads to higher performance expectations. This perception overlooks the purpose of accommodations, which is to level the playing field, not to provide an edge. As a result, autistics may feel compelled that they have to over-perform to justify the accommodations they receive (which leads to burnout) or conversely may not be able to meet that higher bar. 

Gratefulness for Accommodations. Accommodations are often treated as favors being granted, leading to the expectation that autistic individuals should feel grateful for this largesse. This can create an imbalance in power dynamics, where the need for accommodations is seen as a privilege rather than a right, adding another layer of pressure on autistic individuals.

Higher Performance Standards In professional or academic settings, autistic individuals might be held to higher performance standards to counteract biases and demonstrate their worthiness for inclusion or advancement. This can lead to burnout and mental health issues, as they strive to meet expectations not equally applied to their neurotypical counterparts.

Social Acceptance Conditions. Inclusion in social groups might come with conditions that require autistic individuals to mask their natural behaviors or suppress their autistic traits, which is mentally and emotionally taxing. This masking forces individuals to hide their authentic selves to gain acceptance, rather than being embraced for who they truly are.

Normalization Pressure. The pressure to appear "normal" or "less autistic" and "not stim" is a significant barrier to genuine inclusion. This expectation forces individuals to suppress their identity to fit into a predefined mold, leading to stress and reduced self-esteem.

Negative Attribution Bias

Living in an ableist-centered world significantly influences the development of negative attribution biases among autistics. 

Frequent Experiences of Discrimination. Continuous exposure to ableism, where autistics face discrimination, exclusion, and negative stereotypes, leads to a general expectation of negative treatment from others. This constant barrage of negative experiences can result in heightened sensitivity to potential negative actions and intentions, fostering a negative attribution bias.

Social Marginalization. Being marginalized and misunderstood in social contexts can erode trust in others. When autistics repeatedly encounter negative, dismissive or hostile attitudes, they might start to interpret ambiguous social cues more negatively as a self-protective mechanism. This social marginalization reinforces the cycle of negative attribution.

Internalized Ableism. Constant exposure to societal ableism can lead to internalized ableism, where autistics begin to believe negative stereotypes about themselves. This internalized negativity colors their perceptions of others' behaviors, leading to a pervasive negative attribution bias.

Lack of Positive Social Interactions. Positive social interactions can counteract negative attribution biases by providing evidence of goodwill and understanding. However, if autistics have limited positive social experiences (or a history that is predominately negative) due to societal ableism, they are more prone to expecting and perceiving negative intentions in others, reinforcing their negative biases.

Stress and Anxiety. Living in an ableist society is inherently stressful and anxiety-inducing for individuals with autism. High levels of stress and anxiety impair social cognition, making it more challenging to interpret social cues accurately and leading to more negative attributions.

To combat these forms of ableism, a shift in societal attitudes and practices toward a more inclusive and equitable approach is necessary. This involves recognizing and valuing disability, creating environments that are inherently accommodating, and reducing the emphasis on conformity to neurotypical standards. Promoting awareness and understanding of ableism in all its forms is crucial in fostering true inclusion for individuals with autism and other disabilities.

Genuine inclusion means ensuring that everyone has the support they need to thrive.

Related Posts [Hostile Attribution Bias] [Neuroception]

Who Autism Research Leaves Out

Read at https://time.com/6299599/autism-research-limited-essay/

"It’s time for researchers and technologists to rethink their methodologies and technologies, and explore other innovative approaches to give all members of the autistic community the care we need."

-Hari Srinivasan, Time

 

Impact of language choices in scientific publication on representation of autistic researchers.

The impact manifests in several key ways.

1. Inclusivity and Accessibility. Language that is clear, direct, and jargon-free is more accessible to a wider audience. Which means a wider spectrum of autistics can engage more fully with scientific content, whether they are authors, reviewers, or readers.
2. Bias and stigma. 
3. Representation. Who is getting left out and who is getting included. 
4. Authorship and collaboration. Autistics may face barriers in scientific publishing due to implicit biases in what is considered rigorous or appropriate academic language. This can discourage participation or lead to under representation in authorship and peer review processes.
5. Ethical considerations. Engaging the autistic community ensures that scientific discourse does not inadvertently marginalize or misrepresent groups.
6. Policy and guidelines. Journals and publishers can influence language norms through their style guides and editorial policies. By adopting guidelines that favor inclusive and respectful language, publishers can lead the shift towards more equitable representation in scientific literature.

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? 😔

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.

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.

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.

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. 

Solutions not more talk or more labels

I would like to see ACTION on ACTUAL SOLUTIONS - communication, biomedical physiology (physical/mental health), sensorimotor, policy, funding, myriad equity of access issues. Level the playing field so that ALL autistics can make use of opportunities. Thats quality of life.

Simultaneously reclaim and destigmatize existing labels so they can’t be used against you, instead of airtime and resources creating more and more new labels /terminology and then more airtime arguing about which is good/bad.

Understanding Hostile Attribution Bias in Autism

 in PlanSpeak Plain Language for Lay Reader

Hostile Attribution Bias is when someone thinks others are being mean or hostile, even when their actions are unclear or accidental. For example, if a person with this bias gets accidentally bumped into, they might believe it was done on purpose. This can lead to more misunderstandings because they react as if they are being threatened.

Hostile Attribution Bias and Autism. 

But because autistic people often struggle with social cues and communication, it's possible they might also experience this bias.

Studies have found that autistics are more likely to see ambiguous situations as hostile compared to non-autistics. This can lead to higher levels of social anxiety and problematic behaviors like aggression or self-injury.

The Role of Society However, this bias in autistic people might not just be due to their difficulty with social cues. It can also come from a lifetime of facing social stigma, exclusion, and misunderstanding. When someone is repeatedly treated negatively, they can become more sensitive to potential threats. They lose trust that others will treat them well. This sensitivity means they might see even innocent actions as harmful.

Challenges Faced by Autistics. Autistics often face unique social challenges and stigma, which can make interpreting social cues even harder. They are frequently misunderstood and rejected. This is even worse for those with more noticeable behaviors or communication issues. From a young age, they might be placed in educational systems with low expectations, reinforcing a belief that they can't succeed. The very people (professional/educators) put in place to support them can often end up limiting opportunities and discriminating againsst them. This cycle of negative experiences can make them more likely to develop hostile attribution bias.

Impact on Mental Health. The combination of social difficulties inherent in autism and external societal stigma can create a strong foundation for developing hostile attribution bias. This not only affects their social interactions but also adds to their mental health struggles.

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Read more on Hostile Attribution Bias: [Version for Scientific/Academic Audience],  [PlainSpeak for the Lay Reader], [A Simple Definition]

Related Posts on [Neuroception], [Negative Attribution Bias] 

Spoon Theory and Autism

Spoon Theory: Spoon theory is a conceptual framework that uses "spoons" as units to represent finite daily energy reserves in individuals with disabilities or chronic illnesses. In autism, it underscores the significant energy demands associated with sensory processing challenges and social interactions, which can lead to rapid energy depletion.[Read on at.. 

PlainSpeak: Spoon theory is a way to explain the limited energy people with disabilities or chronic illnesses have, using "spoons" as a metaphor for energy. For autistic people, it highlights how everyday activities and sensory experiences can quickly deplete their energy, helping others understand the need for empathy and support.

Neuroception and Autism: Unpacking the Neurological Underpinnings of Safety Perception

Neuroception, a concept introduced by Dr. Stephen Porges, refers to the unconscious neural process by which the nervous system evaluates environmental stimuli to determine whether situations or people are safe, dangerous, or life-threatening. This assessment involves complex neural circuits that process sensory input and influence autonomic responses, particularly within the autonomic nervous system (ANS). Neuroception is pivotal in shaping an individual's physiological state and behavioral responses, particularly in the context of social engagement and self-regulation.

Research indicates that neuroception is closely linked to the vagal nerve's activity, a critical component of the parasympathetic nervous system. The polyvagal theory, also developed by Porges, suggests that the vagal nerve's two branches—the myelinated ventral vagal complex (VVC) and the unmyelinated dorsal vagal complex (DVC)—play distinct roles in regulating physiological states and behavioral responses (1). The VVC is associated with social engagement behaviors and a sense of safety, while the DVC is linked to immobilization responses often seen in life-threatening situations.

In autism, atypical neuroception may contribute to differences in sensory processing and social interactions. Autistic individuals often experience heightened sensitivity to sensory stimuli, which can result in their perceiving benign environments as overwhelming or threatening. This heightened state of perceived threat can trigger autonomic responses that manifest as anxiety, withdrawal, or challenging behaviors, complicating social engagement and adaptive functioning (2).

Neuroception is not merely a sensory processing issue but can be tied to a broader social construct known as hostile attribution bias. Hostile attribution bias is the tendency to interpret ambiguous situations or behaviors as having hostile intent. In autistic individuals, this bias might manifest due to heightened sensitivity to sensory stimuli, where the nervous system erroneously signals danger in non-threatening situations (1; 3).

Studies have shown that autistic individuals are more likely to perceive ambiguous social situations as hostile [4] compared to neurotypical peers, a tendency linked to higher levels of social anxiety and maladaptive behaviors such as aggression and self-injury (SIB). This bias may not only stem from inherent difficulties in social cue interpretation but could also be a result of chronic exposure to societal stigma and exclusion. Research suggests that prolonged negative social experiences, such as discrimination and misunderstanding, can significantly shape cognitive and emotional responses, leading to a heightened sensitivity to potential threats or hostile intentions (3).

Moreover, research has highlighted that the interoceptive accuracy, or the ability to accurately perceive internal bodily signals, may be altered in autism. This alteration can affect the individual's capacity to assess internal states, further influencing neuroception (3). As a result, interventions aimed at enhancing interoceptive awareness and modulating sensory input may offer therapeutic benefits by improving the neuroceptive processes in autistic individuals.

In conclusion, neuroception offers a framework for understanding the underlying neural mechanisms that influence how individuals with autism perceive and respond to their environment. By integrating findings from neurophysiology, sensory processing research, and therapeutic interventions, we can better support the development of strategies that promote adaptive functioning and well-being in the autistic community.

Related Posts on [Neuroception], [Negative Attribution Bias] and [Hostile Attribution Bias]

References:

Porges, S. W. (2007). The polyvagal perspective. Biological Psychology, 74(2), 116-143.
Klintwall, L., Holm, A., Eriksson, M., Carlsson, L. H., Olsson, M. B., Hedvall, Å., & Fernell, E. (2011). Sensory abnormalities in autism. Research in Developmental Disabilities, 32(2), 795-800.
Schauder, K. B., Mash, L. E., Bryant, L. K., & Cascio, C. J. (2015). Interoceptive ability and body awareness in autism spectrum disorder. Journal of Experimental Child Psychology, 131, 193-200.
White, S. W., Ollendick, T., & Bray, B. C. (2011). College students on the autism spectrum: Prevalence and associated problems. Autism: The International Journal of Research and Practice, 15(6), 683-701.

Spoon Theory and Autism

 Plain Language Version

What is Spoon Theory?

Spoon theory helps explain how people with disabilities or chronic illnesses have limited energy each day. It was created by Christine Miserandino, who has lupus, to show what it's like to live with low energy.

How It Works

• Spoons = Energy: Imagine you have a certain number of spoons each day. Each spoon represents a bit of your energy.
• Using Spoons: Every activity, like getting out of bed, taking a shower, or going to work, uses up some of your spoons.
• Limited Spoons: People with disabilities have fewer spoons, so they need to be careful with how they use them to avoid running out of energy.

Spoon Theory and Autism

For autistic people, spoon theory can help explain why everyday things can be so tiring:

• Sensory Overload: Loud noises, bright lights, or crowded places can quickly use up spoons because they need a lot of energy to deal with.
• Social Interaction: Talking to people and being in social situations can be very tiring and use a lot of spoons too.

Understanding spoon theory can help people see why autistic individuals might get tired easily and need more rest. It encourages empathy and support, helping create a kinder and more inclusive world

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Looking at the Self

In the context of disability and autism, all the terms discussed below takes on a unique significance as individuals may grapple with challenges that affect their physical, cognitive, emotional, and social attributes. Understanding one's own abilities, limitations, and unique traits can be an integral part of developing a positive self-perception and fostering self-acceptance and empowerment within the disability and autism communities.

Self-Perception: refers to how we perceive themselves, including our physical, cognitive, emotional, and social attributes. It involves forming an understanding of one's own characteristics, abilities, and behaviors. Self-perception can encompass both internal aspects, such as thoughts and emotions, and external aspects, such as appearance and social roles. It involves recognizing oneself as a distinct entity separate from others and the environment.

Self-Reflection: involves the process of introspection and examining one's thoughts, feelings, and experiences. It entails looking inwardly and exploring one's own inner world. Self-reflection allows individuals to gain insight into their beliefs, values, motivations, and behaviors. It often involves asking oneself questions, considering personal experiences, and analyzing one's own actions and their consequences. Self-reflection facilitates self-understanding, personal growth, and the ability to learn from past experiences.

Self-Evaluation: refers to the process of assessing one's own abilities, performance, and worth. It involves comparing oneself to internal or external standards and making judgments about one's strengths, weaknesses, and accomplishments. Self-evaluation can be influenced by various factors, including personal goals, social comparisons, and feedback from others. It plays a crucial role in shaping self-esteem, as positive self-evaluation can enhance feelings of self-worth and competence, while negative self-evaluation can lead to self-doubt and low self-esteem.

Self-Awareness: is the conscious knowledge and recognition of one's own existence, thoughts, feelings, and sensations. It involves being cognitively and emotionally attuned to oneself. Self-awareness allows individuals to monitor and reflect upon their own internal states, behaviors, and reactions in relation to themselves and their environment. It involves recognizing one's own strengths, weaknesses, values, and beliefs. Self-awareness is a fundamental aspect of self-consciousness and is essential for introspection, self-regulation, and social interactions.

Nothing about us, without us.

The phrase "Nothing about us without us" (NAUWU) gained prominence in the 1980s as disability rights movement began to gain momentum and assert the rights of disabled individuals. It resonated with the broader social justice movements that advocated for marginalized communities to have control over their own destinies and be actively involved in decision-making processes.

NAUWU represents a powerful demand for inclusivity, equal participation, and the recognition of disabled individuals as the experts of their own lives. It encapsulates the ongoing struggle for disability rights and the importance of centering the voices and experiences of disabled people in all matters that concern them.

NAUWU  is grounded in the principle of self-advocacy and the belief that the disabled should have a voice and agency in shaping policies, laws, and programs that directly impact them. It emphasizes the importance of including the perspectives and experiences of disabled individuals in all aspects of disability-related discussions, rather than making decisions on their behalf without their input or representation.

Origins of the phrase NAUWU: 

My friend and fellow autistic Rebecca Eli-Long states "I've been told that it entered US disability rights spaces via South African activists. At least that's what's reported in James Charlton's book, Nothing About Us Without US"

While it is challenging to attribute the phrase to a specific individual, it has been embraced and popularized by disability rights activists, organizations, and scholars worldwide. 

The slogan has become a rallying cry for disability rights advocates, reinforcing the core principle of empowerment, self-determination, and the right to be heard and respected.

One notable event associated with the early use of the phrase is the International Year of Disabled Persons, which was proclaimed by the United Nations in 1981. This declaration helped to bring global attention to disability rights and led to increased advocacy efforts by disabled individuals and organizations.

Context of Autism Research 

Recent years have seen some movement in discussion groups led by university and private research labs to hear inputs from all stakeholders, which includes autistics, family members, professionals (therapists, medical professionals, caretakers etc), with a long term view that such participatory research will lead to meaningful research and meaningful solutions. 

The good part is that finally there is some acknowledgement of the principle of NAUWU. 

Good beginning, but only the beginning. Let's not celebrate just yet. There are still miles to go. 

Why? Because the idea of "Nothing About Us Without Us" is 40 years old (in the 1980s) and it has taken all the way till the 2020's to see movement towards even acknowledging our voices.

Is it going to take another 40 years to see the next step of our voices translating into research and actual translatable solutions on the ground (instead of sitting as academic theory).

And will those solutions address everyone's needs or continue to focus on a narrow band of autistics, which means the rest of us continue to slip through those cracks and get left behind. 

What is the timeline? Is it even going to happen in my life time? 

 

Honestly in the the 2.5 decades I've been around, I have not seen much in terms of translatable autism solutions. We are still being peddled therapies and theories that work for a narrow band, but applied to all.

After all, there is a  ton of profits, fame and power for select groups in the autism space, so there is competition to becoming the loudest voice and the sole authoritative voice in the autism space, even if it means demeaning others. 

The irony being no one is an autism expert, as no one knows still enough about autism to be an expert. 

There is the occasional token nod to NAUWU to brush that argument out of the way. 

The result is not just the lack of solutions but continued exclusion and a poor quality of life and access to opportunities for the remaining autistics. To the add to the confusion, the autism community seems to be divided into  polarized camps and folks like me who desperately need translatable solutions are not getting them. 

Linear and Non Linear Thinking

Linear and non-linear thinking represent distinct cognitive styles for processing information and solving problems.

Linear Thinking is characterized by a sequential, logical approach. It involves following a step-by-step progression to reach conclusions or solve problems. Linear thinkers focus on cause-and-effect relationships, rely on logical reasoning, and use a structured, organized method. This approach is effective for tasks requiring logical analysis, systematic breakdown of problems, and adherence to specific processes.

Non-Linear Thinking is defined by a holistic, divergent approach. Non-linear thinkers make connections between seemingly unrelated ideas, engage in creative, out-of-the-box thinking, and see patterns others might miss. They generate multiple solutions to problems and think in an intuitive, associative, or visual manner. This cognitive style excels in creative problem-solving, pattern recognition, and generating innovative ideas.

Both have strengths. Linear thinking is often effective for tasks that require logical analysis, step-by-step reasoning, or adherence to a specific process. Non-linear thinking, can be valuable in creative problem-solving, pattern recognition, generating innovative ideas, or seeing the bigger picture.

Autistics are known to exhibit a wide range of thinking styles, and some may excel in non-linear thinking processes. Our ability to make connections, see patterns, or approach problems from unconventional perspectives can be a unique strength.

However, traditional IQ tests often emphasize linear thinking and may not fully capture or assess the strengths of non-linear thinking in the autistic population.

Recognizing and valuing both cognitive styles can provide a more comprehensive understanding of cognitive abilities in autism.

Linear v Non Linear Neuroscience Version, Plain Language Version

Why IQ Testing is Problematic in Autistics

 

Some reasons why  IQ Testing is Problematic in Autistics.[What is IQ Testing]

• Communication, Language and Social Challenges: Many IQ tests heavily rely on verbal and social interaction (including comprehension, vocabulary, & verbal reasoning), which can be challenging for autistics who may experience difficulties with language, communication, (eg: difficulties with expressive and receptive language, pragmatics, and understanding abstract or ambiguous language) and social skills. This can lead to misinterpretations of their abilities.