Abstract
Until the late 20th century, neurodiverse individuals lacked appropriate support structures, treatment, advocacy, or a sense of community, as much of their identity had been pre-defined by a medical model entirely focused on their deficits compared to a neurotypical person. Historically, many neurodiverse individuals had extreme medical treatments forced upon them, attempting to cure what was considered a disease. In 1999, a publication by Singer would finally sway the previously held popular opinion that neurodiversity was a pathological condition requiring a cure, shifting the consensus towards it being an identity.
Neurodiverse support and advocacy networks benefited greatly from the numerous technological advancements of the 20th and early 21st century, substantially increasing their global presence, size, and scope. The establishment and growth of Internet connected social networks and platforms spawned numerous neurodivergent curated communities and sub-networks, enabling user-moderated spaces for neurodiverse individuals to communicate and express themselves. These spaces provide for diverse representation while promoting the importance of inclusion while enshrining a sense of belonging, personal value, and individual identities. Many of these spaces provided and promoted access to educational information about various neurodivergences, facilitated spaces to engage and discuss with their peers, and a platform to share and reflect on their lived experiences, while recursively welcoming users to be part research, discussions, and to have their voice heard.
While there is much ground still to cover, social networks and online platforms are being utilised by a new wave of neurodivergent individuals who have personally taken to advancing the neurodiversity movement in their own unique way, by disseminating educational material and engaging in discussions with broader audiences. Content curators and their supporting communities are actively engaging with other users on a global scale to resolve misunderstandings, contest misinformation and tackle many social stigmas still held about neurodiversity.
Introduction
Neurodiverse individuals have historically been viewed by society and the medical community as those who were considered not normal and were afflicted with a terrible disease which encompassed a diverse range of symptoms which placed a strong emphasis on the individual’s functional deficits and differences when compared to that of the standard neurotypical individual at the time.
Historical medical procedures to cure and treat such individuals typically resorted to extreme treatment modalities that today would be considered abhorrently inhumane and barbaric were still being performed up until the late 1970s. In the two decades following, the groundwork had been laid for the neurodiversity movement while simultaneously the world would embrace and adapt to new computer technologies, including the internet.
As society enters the early 21st century, substantiative technological and societal progress has been made, as neurodiverse individuals have finally been afforded the capacity to participate in research and society as part of the solution, rather than being the problem. Modern internet connected technologies, platforms and services have liberated and empowered so many individuals with readily available access to information, services, support and advocacy and a plethora of communities where they can participate without prejudice.
While the numerous social platforms and internet connected technologies have been the catalysts enabling the advancement of neurodivergent advocacy, enabling self-representation, participation in community and reinforcing one’s own identity, there is still much to be done to foster further education and understanding of what we can do as a collective to create more accepting and inclusive society.
What is Neurodiversity?
Neurodiversity is a term coined by an online community of autistic people in the late 1990’s relating to the ‘neurological diversity of people’ (Botha et al. 2024) or describing the diversity of people’s brains. Neurodiversity is commonly used in association to Autism and Attention Deficit Hyperactivity Disorder (ADHD); however, it has been other conditions such as obsessive compulsive disorder, schizophrenia, and dyslexia among others.
Singer’s (1999) publication popularised the idea of Neurodiversity as an identity, instead of a pathological condition requiring a cure. The overall lack of knowledge and understanding around these neurodevelopmental conditions sparked the inception of the neurodiversity movement in the 1990s with an aim to broadly challenge much of the stigma and all-encompassing categorisation and over generalisation of many neurodivergent conditions, their functions, terminology, and capacity, as defined and labelled by a neurotypical society (Chapman, 2019).
Dr. Nick Walker, an autistic advocate and scholar, presents a widely accepted interpretation of neurodiversity. Walker (Caltech, n.d.) describes the neurodiversity movement as a fundamental shift in the way we perceive neurodivergence, contrasting it with the prevailing pathology paradigm. The pathology paradigm operates on two core assumptions: there is a single correct, normal, or healthy configuration and functioning for human brains and minds, and any significant deviation from this normalised standard indicates a problem. This paradigm influences societal treatment and perception of neurodiverse individuals, leading to stigma, discrimination, and potentially harmful attempts to normalise neurodivergent behaviour.
The neurodiversity movement gained tremendous momentum over the years and has incorporated the massive growth and popularity of the internet over the years, utilising online forums and online chat rooms to facilitate a new way to globally connect individuals, enabling individuals to participate in the broader conversation while sharing their lived experiences. Ease of access to information, communication and collaboration fuelled the creation of many more advocacy groups, furthering the goal of representation for all, advocating for individual rights and suitable accommodations and equitable access to provide a level playing field.
While there has been tremendous amount progress made towards this cause over the years, there is still much to be done into order to educate the masses, as many neurodivergent individuals today are still forced to endure the deficit-based stigma associated with their condition while routinely being misunderstood by society and those around them.
Leadbitter et al. (2021) asserts there is tremendous value in shifting away from the traditional clinical approaches and methodologies, emphasising the need to focus on engagement with neurodiverse individuals to better understand their circumstances, views, lived experiences and specific needs.
The Double Empathy Problem
The concept of the double empathy problem, a theory in both psychology and sociology, was first introduced by Milton (2012), a researcher of autism who is also autistic himself. His theory suggests that the social challenges experienced by autistic individuals interacting with non-autistic individuals can be attributed to a mutual misunderstanding which arises from bidirectional differences in communication styles, social-cognitive characteristics, and lived experiences, rather than because of any inherent deficiency.
Contemporary research by Crompton et al., (2020) indicates that most Autistic individuals possess the ability to engage socially, communicate proficiently, exhibit empathy, and demonstrate social reciprocity with most of their Autistic peers. Their research supports that non-autistic individuals often exhibit a limited comprehension of autistic individuals and display a deficiency in emotional empathy towards them, mirroring the challenges autistic individuals may face in understanding non-autistic individuals.
While Autistic people may occasionally find it challenging to comprehend and socialize with non-autistic individuals, it is probable that many non-autistic individuals harbor prejudiced stereotypes, perceptions, and biases about autistic differences (Gabarron et al. 2022). They may also find it difficult to understand the communication, emotions, and intentions of those with autism, thereby contributing to the manifestation of the double empathy problem (Scheerer et al. 2022).
Social media as a tool for self-advocacy, increasing awareness, and building community
Social media and online social platforms have been identified as significant and beneficial tools for many Autistic individuals. These social oriented internet-connected communication services offer users a unique platform for maintaining existing relationships, acquiring new information, and potentially forming new social contacts. The text-based communication channels of social media de-emphasize the need for interpreting nonverbal cues while providing a more structured form of interaction. This can be particularly beneficial for Autistic people who may find traditional forms of social interaction challenging, however the results may vary due to the complexities, stigma and misunderstandings that may be commonplace in public forums and discussions in an online environment (Wang et al., 2020).
Online social networking provides users with a degree of flexibility to determine their own comfort level with interactions while maintaining control over their relationships with others. For individuals in the neurodivergent community, social media has emerged as a valuable resource for establishing relationships, particularly for those who find social situations challenging (Brownlow et al., 2015).
Social media platforms have over time fostered the growth and engagement of curated online communities while providing users an avenue to promote important topics and issues, while engaging with a global audience to further promote and instil a greater understanding about the neurodiversity movement. The continual dissemination of useful information and raising awareness about various disorders has demonstrated to viability of online social platforms to successfully break through existing stigmas while debunking hordes of disinformation with clear and concise facts and shared lived experiences from users on the platforms.
The propagation of knowledge, shared experiences, and insights into individual identities and their connected communities via social media and its associated platforms can aid the neurodiversity movement in enlightening the public about disabilities like autism and in dispelling misconceptions (Gabarron et al., 2022). By presenting neurodivergent experiences from a firsthand viewpoint, social media can inform the public and reduce stigma associated with certain disorders.
Many neurodivergent individuals successfully utilise social media platforms to express themselves, share lived experiences, communicate with likeminded individuals, and much more. Inadvertently, some users become popular amongst their peers and form personalised sub-communities, encouraging users to participate in conversation relating to community topics and interact in a space which is catered to their unique blend of interests in a space surrounded by others with connected interests.
Examples of such content include TikTok users Nicole Parish (soundoftheforest), Emily Anne (emhahee), Emily Hammond (neurowild_), and Chris Gad (genericartdad), each of whom make unique expressive content relating to their neurodivergence, sharing experiences, and much more. Communities which develop around content creators often find reassurance and reinforcement of their own identities and validation of their own experiences through shared interactions and discussions with other users. Furthermore, there are many fantastic online resources such as blogs and news sites aimed to educate and engage readers. Such a page is the all-encompassing Neuroclastic (Mardero, 2019).
By targeting global audiences, these individuals have the capacity to facilitate further discussion amongst neurodivergent individuals and neurotypical individuals in a mediated space, breaking through the double empathy problem for participants on both sides to arrive at a mutual understanding. A recurring theme which arises in discussion are matters pertaining to the importance of accessibility and inclusivity, which often goes ignored, creating further unbalanced deficits against many neurodiverse individuals who may require generally accommodations to level the playing field.
Inclusivity and accessibility
The consideration of accessibility as a foundational standard for all future projects and designs is pivotal first step towards shaping a future modelled on representation and inclusion. Research by Drummer et al. (2023) asserts that many challenges faced by neurodivergent individuals stem from a misalignment between their needs and the options available to them. This is especially evident when attempting to access products, services, facilities, or environments which were designed solely with the needs of neurotypical and able-bodied individuals in mind, inadvertently excluding many others due to an inclusivity oversight.
Despite living in an increasingly digital world, many developers and creators fail to provide accommodations and accessibility supports for their users and viewers. It is commonplace for web pages, applications, and many other forms of digitally consumed content completely disregard accessibility accommodations and supports as included options when publishing their content for public consumption. Modern accessibility accommodations for digitised content include text-to-speech, closed-captions for audio and video content, audio summaries for content displayed on a screen or page, high contrast viewing options, zoom-controls for small text or images, alternative interactable elements on web pages, forms, or applications, and more.
At present, there are a numerous entities encompassing many varied industries providing support and promotion for accessibility supports in their various sectors. In the digital space, one such entity is the Centre for Excellence in Universal Design (UniversalDesign, n.d.) who have outlined and maintain the guiding principles and set standards, providing structure for digital content creators to implement a foundational level, ensuring their content is inclusive and allows for the equitable delivery of content for all individuals, including those with diverse needs.
Conclusion
There has been a consolidated shift over the past decade, emphasising the application of the social model of neurodiversity. This shift has been driven by the new data gathered in recent research involving participation by neurodivergent individuals and drawing upon their unique insights and lived experiences with their neurodivergence.
Widespread changes towards our understanding and approach of neurodiversity research and treatment were made possible by years of continued advocacy fuelled by the explosive potential and scale of internet connected social platforms and networks, facilitating active participation and engagement on an unprecedented scale, continually advancing the neurodiversity movement forward as a global community.
Many research projects relating to diagnosis, treatment, supports, and affiliated matters now actively seek to engage and involve neurodiverse individuals, established communities, and the numerous support networks. These changes have resulted in continual advancements in and refinements in the approach towards treating and supporting many conditions, while adequately refining the scope for future programs and research.
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