Autism is a spectrum disorder that influences all aspects of identity, resulting in vast differences in individuals even though they share common traits and experiences. To better understand ASD Experiences, this thematic analysis summarized fifteen books by autistic authors and five books relevant to executive function, providing lived experiences, thoughts, and opinions.
Understanding ASD Experiences requires a systems perspective that explores the connections between individuals, their relationships to their communities, and how those communities form customs and traditions, resulting in a collective society. Through a system view, understanding ASD Experiences involves identifying how autistic people relate to their environment and can bridge divides found in communities and society.
Individual Bridges for Self-Advocacy
“When you meet one person with Autism, you’ve met one person with Autism” - Dr Stephen Shore.
The thematic analysis revealed a reoccurring theme of communication issues derived from miscommunication that the Triple Empathy Problem can address. The Triple Empathy Problem explores the mutual communication challenges faced by neurotypical and neurodiverse individuals in understanding and empathizing with each other due to different communication styles, body language, and social norms, as well as the challenges with professionals who use technical terms and concepts, which are often misinterpreted.
Communication
Ideally, communication is a two-way street, with both parties trying to understand each other's communication style. Unfortunately, the burden of adapting communication falls solely on the autistic person, leaving them feeling frustrated and unsure. Autistic people tend to use a direct communication style that relies on the literal meaning of words. Miscommunication happens with neurotypicals because their communication style is more figurative and requires interpreting what is said and unsaid with body language, tone, and facial expressions. The differences in communication styles often lead to the feeling that neurotypical communication, at best, is confusing and incomplete and, at worst, deceptive.
Self-compassion is understanding that communication difficulties are not the sole result of communication efforts from autistic individuals, despite having to shoulder the responsibilities to address and fix the issues. The authors studied in the thematic analysis were able to build bridges to connect with their communities through Self-Advocacy.
Self-Advocacy
The desire to fit in can lead autistic people to ignore their own needs due to fear of social rejection and being labeled weird. Autistic people can use self-advocacy to learn how to express their needs and strategies for mitigating unintentional and intentional consequences of social rejection. Self-advocacy is important because it supports self-care through expressing needs, setting boundaries, and engaging in enjoyable activities. While social interactions can be unpredictable, self-advocacy provides strategies for authenticity and self-acceptance, which is ultimately more rewarding than being merely tolerated.
Building connections is not easy, nor is a linear progression. The authors used masking coping strategies as a form of protection due to past experiences. Self-advocacy is recognizing the issues with masking and forming health responses and boundaries to improve socializing.
Socializing
Autistic people often develop strategies to connect with others, even though social interaction can be challenging. Sharing similar experiences can be a way to show empathy and build understanding or ask several questions to show signs of genuine interest. They may also try to mimic social behaviors to fit in and avoid the judgment of autistic traits as a social faux pas. A defining feature of autism is the challenge of emotional and physiological self-regulation. Predictability and routine can comfort autistic people as they reduce the need for complex decision-making that can be overwhelming. Socially, autistic people may approach interactions with a sense of naivety, assuming others share their straightforward honesty, which can lead to difficulty navigating social complexities and hidden motives, leaving them vulnerable to misunderstandings and manipulation.
Studying individual accounts of social experiences reinforces that ASD influences everyone differently, yet through sharing and discussing similar situations, commonality and shared traits emerge.
Community Bridges for Accommodations
The starting point is to build connections and bridges at the individual level through self-advocacy. Community systems are needed to evaluate social power dynamics to offer accommodations. The thematic analysis reveals that communities fail to provide appropriate services and accommodations primarily due to social status.
Social Hierarchy
Autistic people often find themselves navigating a social world filled with unspoken rules and complex power dynamics. Their natural way of being might unintentionally disrupt these established structures, leading to misunderstandings. Being neurodiverse can feel isolating, as social cues and norms may not come naturally. Rejections can reinforce the belief that autistic interests are unwelcome, and social interaction can be emotionally draining due to sensory overload and difficulty reading emotions, which can sometimes lead to situational mutism, a temporary inability to speak in overwhelming situations.
Socializing and interacting with the public can be demanding and lead to feeling overwhelmed and emotionally drained. Communities can begin to address these issues through design and understanding cognitive load.
Cognitive Load
Autistic people often have anxiety, which can limit working memory, making it difficult to manage multiple tasks or follow complex instructions. Designers can help alleviate stress by reducing cognitive load by providing clear written instructions, checklists, and diagrams that guide the viewer's attention. These tools support recognition to minimize the burden of working memory to recall prior instructions, making it easier to complete an activity.
Design approaches like Universal Design attempt to formulate a solution that maximizes usability for a wide range of people. Inclusive design attempts to develop solutions that remove barriers that prevent equal participation. Participatory Design bridges the gaps between these two design approaches by involving diverse populations and communities in workshops for co-designing and influencing solutions.
Design Considerations
Supporting autistic individuals requires a collaborative approach focused on understanding their needs rather than trying to "fix" them. Predictability and consistency are vital in reducing anxiety. Clear written instructions are often more helpful than spoken ones, as autistic people may process visual information more easily. Difficulties with object permanence and motor skills can also impact daily life. For example, an autistic person might struggle to find a specific toy in a pile because they initially see it as one large mass. Being patient and providing clear visual cues can create a more supportive environment for autistic people. The thematic analysis identified themes related to predictability, direct communication, and sensory awareness derived from diverse individual experiences revealing shared commonalities. Understanding autistic perspectives through personal stories encourages moving beyond generalizations, revealing insights into problem-solving and information processing. Designers can use insights into user mental models and behavior to utilize designs that give users more control of sensory and accessibility features.
Female Perspective
The research data focused more on female autistic experiences, and the thematic analysis reveals autistic perspectives with deep emotional connections, intuitive social understanding, self-reflection, and social masking. The collected experiences demonstrate routine flexibility, ambiguity cohesion, and a strong desire for social interaction. The study aligns with the known assertion that biology and gender influence the presentation of autistic traits and that women appear to mask more often for positive socialization. Further research is needed to understand biological and societal influences on how autistic characteristics present. Additionally, understanding the criteria for an autism spectrum disorder diagnosis and the social model of disability should reveal insights into neurotypical versus neurodiverse socialization.
Studying how communities approach design and accommodations reveals that social status and representation are essential for developing solutions that progress from awareness to accommodations to acceptance.
Society Bridges for Acceptance
Society is an emergent system derived from complex social interactions between communities, with their traditions and customs merging to form a collective whole. Understanding how systems relate and influence each other provides opportunities for neurotypical society to adopt practices for neurodiverse cultural norms. Transitioning to the Social Model of Disability is one avenue for change that bridges the gap towards autism acceptance.
Sara Hendren sums up this idea nicely: “Ability and disability may be in part about the physical state of the body, but they are also produced by the relative flexibility or rigidity of the built world … [disability] reveals just how unfinished the world really is.”
Culture
The study offers insights into individual autistic experiences, emphasizing a need for direct communication, self-advocacy, and representation. The underlying connection is the need for community representation that affirms the vast difference in a spectrum condition while highlighting shared traits and similar experiences. Self-advocacy and community are foundational for autistic people's development of cultural norms, which allow them to express needs, feel seen, and expand social connections. Future research must include non-written sources and non-verbal perspectives to include a full range of autistic experiences and perspectives. Additionally, future research needs to address comorbidity and mental health to understand those needs and challenges.
A thematic analysis aims to identify patterns and themes in qualitative data and find meaning through shared experiences. While the study provides valuable insights, it is essential to note the limitations of the research data.
Research Limitations
The provided research data tended to come from female autistic experiences, which may present differently due to biological and social differences of sex and gender. Future research needs to include a more balanced analysis of male and female perspectives aligned with gender studies to understand shared experiences, challenges, and nuanced differences. Additionally, reviewing the research data from a health lens that compares the social model of disability with the medial model could provide insights for overcoming challenges associated with autism. Lastly, the analysis focused on written communication, which has an inherent bias that skews the data and may not reflect broader experiences from the autistic community. Future research could address these concerns by expanding data collection efforts to include videos, community comments, interviews, etc., to compile a more holistic view.
Conclusion
The thematic analysis of the autistic experiences research provides insights into unique perspectives. It reveals shared themes and patterns emphasizing the importance of self-acceptance, connection with others, and managing daily challenges. While autistic people may struggle with sensory processing, social interaction, planning, etc., it also encourages a growth mindset focusing on understanding social constructs and society's inherent complexities. Society generates customs and traditions, resulting in unspoken rules and expectations that often lead to miscommunication and misunderstandings. By understanding autistic experiences, neurotypical society can assist with communication efforts by adopting a more direct and literal communication style.