outsider scholar activist

Author: unstrangemind (Page 1 of 6)

Autism Is a Disability. But Are You Disabled?

An abstract rainbow spiral intended to be an eye-catching image to attract reader interest.

Autism is a disability. How each Autistic person relates to this fact, however, is deeply personal. Some of us embrace being Disabled as an important part of our identity. Some feel disabled by autism while others feel disabled by society, rather than autism itself. For some, the disabling aspects of autism depend on their environment, while others don’t identify as disabled at all. And that’s okay—our individual relationships with autism and disability are as diverse as we are.

But one thing remains true: autism is always a disability.

This truth matters. Without recognition as a disability, society, government, and medicine would have no obligation to accommodate us. The systems we depend on for survival—whether disability benefits, healthcare, education, or workplace accommodations—exist because autism is classified as a disability. If autism were no longer recognized this way, many of us, myself included, would be left to fend for ourselves in a world that isn’t built for us.

What Makes Autism a Disability?

Disability is often misunderstood. The medical model defines disability as a condition that significantly impacts a person’s ability to function. Autism fits this model because it involves neurological differences that affect how we communicate, process sensory information, and navigate the world.

The social model of disability shifts the focus away from the individual and onto society. From this perspective, people are disabled not by their differences but by the barriers society creates—like rigid expectations, inaccessible environments, and a lack of understanding. Autism fits this model too. When systems are designed for neurotypical people, Autistic people are inevitably excluded and disadvantaged.

Both models have elements of truth, and both explain why autism is a disability within that paradigm. This doesn’t mean autism is inherently bad or that we are broken. It simply recognizes that the world wasn’t built for minds like ours, and that creates real, often life-altering challenges.

Are You Disabled?

While autism is always a disability, how we relate to it as Autistic individuals varies widely:

Some Autists proudly identify as Disabled, finding empowerment and community in the disability rights movement.

Others feel disabled by autism itself, especially when co-occurring conditions, sensory challenges, or communication difficulties make daily life a struggle.

Many feel disabled by society, not by their autism. In a supportive environment with accommodations, they might not feel disabled at all.

Some don’t identify as disabled or may even become offended if someone suggests they are disabled. 

These perspectives are all valid. Your relationship with autism and disability is yours to define. What matters is that we respect one another’s experiences and autonomy while recognizing the shared reality that autism is a disability.

Why Denying Autism as a Disability Is Dangerous

Here’s the problem: if we deny that autism is a disability, we risk losing the very systems that keep us alive.

Disability recognition isn’t just a label—it’s a lifeline. It’s what ensures access to healthcare, education, employment accommodations, and legal protections. If society decided autism wasn’t a disability, it could justify cutting off resources. Autistic people could be told to “buck up,” “fit in,” or “fly right”—and those of us who can’t would be left behind.

This is a matter of survival for many of us. Personally, I wouldn’t be here if autism weren’t recognized as a disability. And I know I’m not alone.

Autism as Disability and Diversity

Some worry that calling autism a disability erases the idea of neurodiversity. But that’s a false dichotomy. Neurodiversity and disability can coexist.

The neurodiversity movement challenges the idea that there’s only one “right” way to think, learn, and experience the world. It celebrates neurological differences, including autism, as natural variations of human diversity.

But recognizing autism as part of human diversity doesn’t mean it’s not a disability. It means that disability isn’t a bad thing. It’s simply a reality, and one that society needs to accommodate. By accepting autism as both a disability and a natural expression  of human diversity, we can advocate for a world that values us as we are while also meeting our needs.

The Power of Solidarity

Whether you proudly identify as Disabled, feel disabled only in certain contexts, or don’t see yourself as disabled at all, autism’s recognition as a disability protects all of us. It ensures we aren’t left to fight for scraps in a system designed for neurotypical people.

Disability isn’t something to be ashamed of. It’s a call for society to do better—for workplaces to be accessible, for schools to support all learners, and for governments to recognize and meet the needs of all its citizens.

Autism is a disability. But how you relate to it? That’s entirely up to you.

Aging and Autism: Insights from Recent Open-Access Research

an illustration of tree rings, symbolizing growth, age, and individuality

As an outsider academic, I often find myself locked out of the latest research behind paywalls. Sometimes I can access papers when I’m near a university library. Most of the time, I’m left with open access crumbs. (This is not fair. I pay taxes that fund universities. I’d argue that using public money to fund research and publication of research implies that the public should have access to the information we are paying for. (Also, I would be more willing to pay for access if the money flowed to the authors instead of in the other direction.))

I’ve been thinking a lot about aging and autism lately, so I pulled up what I could access on that first search phrase: four recent (published in the last four years) open-access papers exploring autistic aging. These papers highlight not just the challenges Autistic people face as we age but also the complexity and diversity of our experiences.

Here’s a summary of what I found. Collectively, they spoke to intersections of health, cognitive function, and social inclusion for Autistic adults.

(If you have access to articles on autism and aging, I would love to hear from you—I’ll gladly review them. This is an area of study I want to spend more time with.)

The Think Tank Paper: Strategies for Autism and Aging

The cornerstone paper of what I found today was a 2021 think tank report titled Strategies for Research, Practice, and Policy for Autism in Later Life. This paper offers a comprehensive roadmap for addressing the challenges Autistic people face as we age.

It emphasizes the importance of inclusion and collaboration, guided by the principle “Nothing about us without us.” The authors argue that aging outcomes are not solely determined by biology but shaped by systemic factors like access to healthcare, housing, and social support. They call for interdisciplinary approaches that focus on abilities rather than disabilities, situating autistic aging within a socio-ecological framework that considers the individual within their environment and community.

Key recommendations include:

• Developing tools to diagnose and study autism in older adults.

• Expanding housing and community support options tailored to autistic needs.

• Addressing the high rates of co-occurring medical and mental health challenges in autistic adults.

• Advocating for lifelong learning and employment opportunities.

This paper provides a hopeful and practical foundation for thinking about autism and aging. The think tank raised important questions for researchers to address.

What the Other Three Studies Reveal

Cognitive Decline: Stratified Insights

A longitudinal study on cognitive aging in autism, published in 2023, challenges some common assumptions, among them, the previously held belief that autism is universally a dementia risk factor. Among Autistic adults without intellectual disabilities, cognitive decline does not appear to accelerate compared to neurotypical peers.

This is an important finding: it reminds us that autism manifests in diverse presentations. Some Autistic people may show resilience in cognitive function, while others—especially those with intellectual disabilities or co-occurring conditions—face greater risks, as also highlighted in the think tank paper.

Inclusive research needs to balance these perspectives. By understanding where accelerated decline occurs and where it doesn’t, we can target interventions appropriately. For Autistic adults without intellectual disabilities, the focus might shift to other issues, like social isolation or physical health, while not neglecting any Autists who do experience cognitive challenges.

Motor and Neurological Trajectories After 40

Aging with Autism Departs Greatly from Typical Aging, a 2020 paper, which analyzed involuntary motor variability using fMRI data, revealed something striking: Autistic aging diverges sharply from neurotypical aging, particularly after age 40.

Autistic adults show unique motor and neurological patterns that suggest a fundamental shift in how our nervous systems age. While these changes don’t necessarily indicate cognitive decline, they might translate into everyday challenges like clumsiness, fatigue, or increased sensitivity to sensory inputs.

This study highlights the need for tailored physical and occupational therapies to support motor function and adaptability in midlife and beyond. It also underscores how important it is to consider biological aging alongside social and systemic factors, as the think tank paper advocates.

Systemic Barriers and Social Isolation

The first of the four papers I read was Aging Well and Autism: A Narrative Review and Recommendations for Future Research (published in 2024). It paints a stark picture of the systemic challenges Autistic people face as we age:

• High rates of loneliness and social isolation.

• Limited access to tailored healthcare and mental health services.

• Persistent disparities in quality of life, with little improvement over time.

These findings align with the think tank’s call for better community-based solutions. Housing models like intergenerational living or microboards, for example, could address social isolation while respecting the independence of Autistic adults. Similarly, expanding access to mental health services tailored to Autistic needs could dramatically improve outcomes.

The Bigger Picture

Taken together, these studies reveal the complexity of aging in autism. On the one hand, we see encouraging findings, like the absence of accelerated cognitive decline in some subgroups. On the other, we face sobering realities, like the heightened risks of loneliness, health challenges, and systemic neglect.

To address these issues, we need both broad, inclusive research and stratified studies that identify the unique needs of different subpopulations. Autistic aging isn’t a monolith, and our approaches to support and policy shouldn’t be either.

Conclusion

Autistic people deserve to age with dignity, support, and understanding. The research I’ve reviewed here offers valuable insights and highlights how much work remains to be done. Let’s continue the conversation—whether by sharing studies, advocating for inclusive policies, or simply listening to Autistic voices telling our own stories of aging.

If you know of studies on autism and aging please send them my way. Together, we can discuss these findings and push for a better future for ALL Autistic adults.

Works Cited

Edelson SM, Nicholas DB, Stoddart KP, Bauman MB, Mawlam L, Lawson WB, Jose C, Morris R, Wright SD. Strategies for Research, Practice, and Policy for Autism in Later Life: A Report from a Think Tank on Aging and Autism. J Autism Dev Disord. 2021 Jan;51(1):382-390. doi: 10.1007/s10803-020-04514-3. PMID: 32361792; PMCID: PMC7195819.

Klein CB, Klinger LG. Aging Well and Autism: A Narrative Review and Recommendations for Future Research. Healthcare (Basel). 2024 Jun 17;12(12):1207. doi: 10.3390/healthcare12121207. PMID: 38921321; PMCID: PMC11203987.

Torenvliet C, Groenman AP, Radhoe TA, Agelink van Rentergem JA, Van der Putten WJ, Geurts HM. A longitudinal study on cognitive aging in autism. Psychiatry Res. 2023 Mar;321:115063. doi: 10.1016/j.psychres.2023.115063. Epub 2023 Jan 18. PMID: 36709700.

Torres EB, Caballero C, Mistry S. Aging with Autism Departs Greatly from Typical Aging. Sensors (Basel). 2020 Jan 20;20(2):572. doi: 10.3390/s20020572. PMID: 31968701; PMCID: PMC7014496.

Why I’m Grateful to Serve on the Board of the Autism National Committee

The AutCom logo: a red torch being held upright by a hand.

For the past three years, I’ve had the privilege of serving on the board of the Autism National Committee (AutCom). I’m deeply grateful for this opportunity to work with an organization whose mission of “Social Justice for All Autistics” resonates so strongly with my own values. AutCom’s focus on social justice for all Autistic people—promoting inclusion, self-determination, and respect—has both guided my work and inspired me.

Social justice, to me, is about more than just equity. It’s about recognizing and centering the voices of those who are most often overlooked: Non-speaking Autists, Autistic people of color, Autists living in poverty, Autists with multiple disabilities, and so many other Autistic people with intersected life experiences.

At the same time, social justice calls us to embrace everyone, rejecting gatekeeping and division. AutCom embodies this nuance beautifully, balancing a commitment to all Autistic people while ensuring that marginalized voices are heard, respected, and centered. Centering doesn’t mean one person’s voice is more important than another’s, just that we value a culture where no Autist is left out.

During my time on the board, I have been continually inspired by the work AutCom does to educate and advocate for our community. The organization’s webinars and newsletters are excellent tools for fostering understanding and inclusion, with diverse panels that represent a wide range of lived experiences. These efforts were already underway when I joined, and it’s been an honor to support and contribute to this vital work.

As a board member, I’ve felt heard and valued. Leadership and my fellow board members have welcomed my ideas and contributions and I’ve received positive feedback about my work. I’m especially grateful for the opportunity to work alongside such like-minded individuals, whose passion for social justice and commitment to the Autistic community have enriched my life in so many ways.

Looking to the future, I hope to see AutCom strengthen our partnerships with other organizations and explore new ways to support the community. One idea I’d love to help create is curating a collection of helpful toolkits and resources from sources that also embrace autistic autonomy and dignity. Not only could we share the collection of tools, we could identify gaps in available resources, potentially developing our own toolkit to address unmet needs. By continuing to listen to the larger community and collaborate with others, I believe we can deepen our impact and remain potent in advancing social justice for Autistic people.

Serving on the board of AutCom has been a deeply fulfilling experience. It’s given me the chance to be part of meaningful work that reflects my personal values, and to build connections with incredible people who share the same vision. I’m grateful for the opportunity to help move the needle toward greater inclusion, respect, and justice for all Autistic people—and I look forward to what the future holds.

Please take a look at today’s AutCom! See if our resources resonate with you, consider joining us if you haven’t already, donate if you have the resources and want to help us create more for the community. Thank you.

Are Autistic People Vulnerable?

A small white flower with green leaves and buds grows through a crack in gray concrete.

The word vulnerability carries a lot of weight. For Autistic people, it’s often used to describe us in academic research, social services, and advocacy circles. Autistic people are officially labeled a “vulnerable population.” But what does that actually mean? And why do so many Autistic people push back against being called vulnerable? Is it because the term makes us feel weak, helpless, or infantilized—or is there something deeper at play?

I’ve thought about this a lot. As an Autistic person who has spent years writing about autism, using my own life as a case study, I’ve lived with this tension. I’ve been labeled vulnerable countless times—sometimes in ways that felt accurate, other times in ways that felt dismissive. Over time, I’ve realized that vulnerability isn’t as simple as it seems. It’s complex, dynamic, and often misunderstood.

What Does Vulnerability Mean?

Let’s start with the basics. When we call someone “vulnerable,” we’re usually talking about exposure to harm. That harm could come from other people, systems, environments, or even internal struggles. But vulnerability isn’t a fixed trait—it’s something that can change depending on the situation.

For Autistic people, vulnerability can show up in three key ways:

Vulnerability as a Structural Condition

Many of the risks Autistic people face come from systemic barriers. Society isn’t built for us, and that creates challenges. For example:

Workplaces often refuse to make accommodations, leaving us more likely to lose jobs or burn out.

Healthcare systems frequently misunderstand Autistic needs, leading to inadequate care.

Social norms prioritize neurotypical communication styles, which can leave us open to bullying, exploitation, or exclusion.

This kind of vulnerability is closely tied to the way society treats disability in the social-relational model. The social-relational model tells us that disability isn’t an inherent trait—it’s something society creates by failing to accommodate diverse needs. For example, an Autistic person who thrives in a quiet, structured environment might struggle in a loud, chaotic workplace not because they’re “too sensitive,” but because the workplace wasn’t designed with their sensory needs in mind. The problem isn’t the person—it’s the system.

Structural vulnerability works the same way. It’s not about an inherent weakness or limitation in Autistic people. It’s about how society is structured to exclude us. When systems, policies, or environments don’t consider our needs, they make us vulnerable. But in an inclusive society, those same vulnerabilities could disappear entirely.

As Mel Baggs wrote:

“Usually, when people assume things about me, they’re wrong. My life is complicated, and it does not follow the standard stories that people expect either of disabled people in general, or of people with my specific conditions. Pretty much no matter what I say, it ends up creating assumptions that are inaccurate. I am not trying to mislead people, I just can’t tell my life story every time I say something about myself. Please be understanding about this. Every person is different, even a person with a collection of labels identical to mine is going to be completely different from me in a large variety of ways. For some reason, however, the blame always ends up being put at our feet as disabled people, when we aren’t what someone expected.”

(Ballastexistenz)

Mel’s words capture the exhausting reality of navigating societal assumptions. Vulnerability, in this context, isn’t about who we are—it’s about the ways we’re misunderstood and the blame we carry for failing to meet other people’s expectations.

Vulnerability as a Situational State

Vulnerability isn’t permanent; it’s contextual. An Autistic person might feel completely capable and confident in one setting and deeply exposed in another. For example:

Imagine someone who thrives in their home, surrounded by familiar routines, but becomes overwhelmed in a loud, chaotic grocery store.

Or think about a workplace meeting where you’re asked to answer an unexpected question on the spot. For some Autistic people, this might feel like a small crisis of vulnerability.

The environment, support systems, and social context all play a role in shaping whether someone feels vulnerable at any given moment.

This is the story of the vulnerability I currently experience as a transgender, multiply disabled, unhoused person living in a vehicle, often in places where I don’t know anyone and am not plugged in to local support systems, formal or informal. I’m a strong and competent person, but the way I live is against the law so I am always vulnerable to whatever authorities decide to believe about me or do to me. If they knew me, they might understand. Like Mel, I can’t tell my life story every time I say something about myself. I am vulnerable.

Vulnerability as Emotional Openness

Sometimes, vulnerability isn’t about risk at all—it’s about authenticity. Autistic people are often known for being direct and honest. We say what we mean, even when it’s not the socially “safe” thing to do. This kind of emotional openness can make us vulnerable, but it can also be a profound strength. It’s the foundation for genuine connection and integrity.

Why Do Some Autistic People Reject Being Called Vulnerable?

Many Autistic people dislike being labeled vulnerable, and for good reason. The word often comes with baggage. It can feel like:

Infantilization: Being treated as if we’re helpless or incapable.

Stigma: The assumption that vulnerability means weakness or lack of competence.

Overgeneralization: A blanket label that erases individual strengths and differences.

Reframing Vulnerability

Here’s the thing: being vulnerable isn’t inherently bad. It’s human. For Autistic people, vulnerability often comes from external conditions, not internal flaws. The problem isn’t that we’re “too sensitive” or “too different.” The problem is a world that isn’t designed for us.

In some cases, vulnerability can even be a strength. Being open and authentic takes courage. It’s what allows us to form deep, meaningful connections. It’s what drives creativity and innovation. Vulnerability, when supported and protected, can be a source of power.

What if, instead of seeing vulnerability as a weakness, we saw it as an invitation? An invitation to build systems that work for everyone. An invitation to create communities where people feel safe being themselves. An invitation to honor the unique ways each person contributes to the world.

Where Do We Go From Here?

The question isn’t “Are Autistic people vulnerable?” The better question is, “What does the world need to change so that Autistic people aren’t made vulnerable?”

For me, part of that answer lies in stepping back to create space for myself, to live closer to the rhythms of nature, and to recharge after years of emotional labor. For you, it might look different. Maybe it’s advocating for systemic changes or simply recognizing your own needs and honoring them.

Vulnerability is part of being human. But it’s not the whole story. Autistic people are resilient, creative, and strong in ways the world often fails to see. Let’s build a world that sees us fully.

Accommodation Drift: A Pitfall for Autistic Workers

A Jenga-style tower of wooden blocks with a hand removing one block. The game is in precarious balance.

For Autistic workers, success often depends on clear communication, predictable expectations, and an environment that aligns with our strengths. But what happens when these supports slip away?

Accommodation drift—the neglect or sudden removal of workplace supports—can leave even the most capable workers struggling to meet expectations. For Autistic employees, this isn’t just about job performance; it’s about health, quality of life, and the ability to stay employed.

Accommodation drift isn’t always subtle. Sometimes it happens gradually, as supports are deprioritized over time. Other times, it’s abrupt and dramatic—pulling the rug out from under a worker who was thriving just days earlier. Either way, the result is the same: the worker is set up to fail, and the workplace loses out on their contributions.

I’ll share some thoughts from my experience, but countless other Autistic workers have had similar experiences: Workers whose success depends not just on their abilities, but on consistent, thoughtful support.

My Sudden Accommodation Drift

Some time ago, I had a job I loved and excelled at. I was thriving, meeting expectations, and confident in my ability to handle a major assignment I’d been preparing myself for over five months to accomplish. Then, just two weeks before the assignment would go into action, everything changed.

New interpersonal dynamics, unexpected disruptions to routines, and shifts in my work environment created barriers I hadn’t planned for. Routines I relied on were upended, and basic aspects of my workspace became inaccessible.

Despite my concerns, the changes were brushed off as “not a big deal,” and “simple to address.” I was afraid to say no, fearing it might cost me my job. It cost me my job anyway. The abrupt changes undermined the foundation I’d built to succeed, leaving me unable to complete the assignment. And when I failed, all the blame fell on me.

Why Accommodation Drift Happens

Accommodation drift—whether gradual or sudden—often stems from structural issues in workplaces, including:

Workplace Focus on Productivity: Accommodations are often seen as secondary to work goals. When priorities shift, support for workers can be sidelined, intentionally or not.

Unrealistic Expectations: Consistent success can lead managers to assume a worker no longer needs accommodations—or can handle anything thrown at them.

Dismissed Concerns: When workers voice concerns, they can be seen as overreacting or resistant to change, rather than identifying legitimate barriers to success.

Fear of Advocacy: Self-advocacy can feel risky, especially in workplaces where raising concerns might lead to retaliation or being labeled “difficult.”

The Role of External Support

One solution to accommodation drift that I wish I could access is having external support systems—advocates or mediators who work outside the workplace to ensure accommodations are maintained.

I’ve been trained to do this work for others—as an Employment First employment specialist—but for decades I’ve met barriers when I’ve tried to secure this much-needed service for myself.

Here’s why work support can be invaluable:

Focused on the Worker’s Needs

While managers and colleagues may care, their primary focus is on work goals, not accommodations. An external advocate’s sole focus is on the worker, ensuring their needs don’t fall by the wayside.

Neutral and Unbiased

External advocates aren’t bound by workplace politics. They can:

• Raise concerns without fear of retaliation.

• Mediate between the worker and employer.

• Help clarify and implement accommodations that work for everyone.

Supporting Self-Advocacy

Self-advocacy can be emotionally exhausting, especially when concerns are dismissed. Imagine a worker who uses a wheelchair being handed a hammer and a pile of lumber every time they point out there isn’t a ramp to an area they need to access in order to do their job.

Self-advocacy is draining for everyone (including wheelchair users who aren’t asked to build their own ramps, of course.)

An outside advocate can:

• Translate the worker’s needs into actionable recommendations.

• Provide reassurance and guidance during difficult conversations.

• Reduce the emotional toll of navigating workplace dynamics.

In my situation, an advocate could have made all the difference. They could have intervened when the parameters of the assignment suddenly changed, ensuring my concerns were heard and accommodations were adjusted before it became a crisis. They could have talked me out of the internalized ableism of  second-guessing myself and my genuine workplace needs. They could have counseled me to say no, even at the last minute, to an assignment that suddenly became a barrier.

A Path Forward: What Workplaces Can Do

Preventing accommodation drift benefits everyone—not just Autistic workers. Here’s how workplaces can create environments where support is sustained:

Treat Accommodations as Evolving

Accommodations aren’t a one-time fix. They need to adapt as roles and circumstances change. Regular check-ins can ensure support remains effective and relevant.

Listen to Concerns

When workers raise concerns, treat them as signals—not complaints. Dismissing them risks undermining the worker’s ability to succeed.

Create a Culture of Advocacy

Workers need to feel safe advocating for their needs without fear of retaliation. Encouraging open communication and external advocates when needed can help.

Pro tip: If you’re a manager, you probably think external advocates aren’t needed because you’re good at what you do. It doesn’t matter how good you are—your Autistic workers need advocates who don’t work for your company. They probably haven’t asked for this because they think it’s not an option or fear losing their job if they ask.

Respect the Need for Preparation

For Autistic workers, preparation is everything. Sudden changes to expectations or environments can disrupt carefully built scaffolding. Workplaces must recognize the importance of predictability and avoid last-minute changes whenever possible.

A Call for Change

Accommodation drift isn’t just an Autistic issue—it’s a workplace issue. When support systems fail, businesses miss out on the contributions of talented workers, and employees face unnecessary stress, health impacts, and job loss. But when accommodations are upheld, workplaces thrive—becoming more inclusive, productive, and successful for everyone.

For Autistic workers like me, the solution isn’t just about making accommodations—it’s about maintaining them. It’s about creating structures that adapt to change, support advocacy, and respect the needs of all employees.

Further Reading

For those interested in exploring affirming resources related to workplace accommodations:

Job Accommodation Network (JAN)

Expert guidance on workplace accommodations and disability employment, offering resources for both employers and employees.

Embrace Autism: Workplace Accommodations for Autism & AuDHD

A practical guide to accommodations for Autistic and ADHD workers, including advice on navigating workplace dynamics.

Real Work For Real Pay: A Self-Advocate’s Guide to Employment Policy (ASAN)

An overview of employment policies and the role of accommodations in work.

Let’s stop accommodation drift in its tracks—and build workplaces that work for everyone.

Kafka Trap

Image Description: A conceptual graphic depicting a circular maze in shades of purple and black on a green background. At the center of the maze stands a shadowy figure, illuminated by a spotlight, symbolizing entrapment. Surrounding the maze are phrases like “Prove it,” “You’re wrong,” and “Defend yourself,” evoking the feeling of circular logic and no-win arguments. At the base of the maze, the words “Kafka Trap” are written, highlighting the theme of the image. The overall tone is both intellectual and slightly eerie, emphasizing the complexity and frustration of such rhetorical traps.


Have you ever found yourself in a conversation where no matter how you respond, you’re somehow “proving” the other person’s point? It feels like being stuck in a rhetorical maze with no way out, and every turn you take seems to reinforce their argument against you. This kind of interaction is known as a Kafka trap, named after Franz Kafka’s novel The Trial, where the protagonist is accused of a crime but is never told the specifics of what he did wrong. His every attempt to defend himself is twisted into further evidence of guilt.

As Autistic people navigating online conversations, it’s essential to recognize when you’re being pulled into a Kafka trap. Recently, I found myself in one such situation on LinkedIn. The experience left me exhausted, but it also sharpened my ability to spot this manipulative tactic and disengage from it effectively.

The Kafka Trap in Action

In this particular conversation, someone claimed that Autistic people shouldn’t communicate in writing because it gets “heated and messy.” She framed this as a sweeping generalization, rooted in her personal experience. From the start, the setup was problematic: if I agreed, I’d validate the harmful generalization about Autistic communication. If I disagreed, no matter how politely, my disagreement could be framed as “proof” of how messy and heated written communication with Autistic people can become—justifying their point.

This is the essence of the Kafka trap: no matter what you say or do, your response is used as evidence against you.

Spotting the Signs of a Kafka Trap

Here are a few red flags to help you identify a Kafka trap:

Generalized Claims Without Nuance

Look for sweeping statements that lump together diverse groups of people (e.g., “All Autistic people are X”). These claims are often built on anecdotal evidence and presented as universal truths. As the saying goes: if you’ve met one Autistic, you’ve met one Autistic.

Circular Logic

In a Kafka trap, the argument circles back on itself. Any attempt to refute the claim is reframed as supporting evidence. For example, if you defend yourself, they might say, “See? This defensiveness proves my point!”

Shifting the Goalposts

When challenged, the person may subtly change the argument. I like to call these tactics “slippery soap” because it feels like I’m standing on wet soap that keeps shooting out from under me.

In this case, the original claim about how people should always communicate with Autistic people shifted to a focus on her own needs as an ADHD person, accusing us of demanding she accommodate our communication style at the expense of hers (a completely different conversation than the one we were having one second earlier!)

And when I pointed out that I also have ADHD, she moved the goalposts again. More slippery soap. I give up pretty quickly on slippery soap conversations these days because I just don’t have the energy for pointless games of intellectual tag.

Emotional Triggers

Kafka traps often rely on eliciting emotional reactions, like frustration or defensiveness, which can then be used to discredit you.

How to Avoid the Kafka Trap:

Recognize the Pattern

The sooner you spot the no-win logic, the better. Take a step back and assess whether the conversation is genuinely open to dialogue or if it’s designed to entrap you.

Name It

If it feels safe to do so, call out the Kafka trap. By naming the tactic, you disrupt its power. In my LinkedIn conversation, I posted a public warning for others, explaining how the trap worked and why engaging further was futile.

Don’t Take the Bait

Resist the urge to argue within their framework. Instead, challenge the premise of their claim or disengage entirely. For example, you could say, “This conversation doesn’t seem productive, so I’m stepping away.”

Set Boundaries

If the interaction feels toxic or draining, prioritize your mental health and personal energy. It’s okay to block or mute someone who’s arguing in bad faith. That’s what I eventually did, and it was liberating.

Lean on Community

Talk to trusted friends or allies who can help you process the situation. In my case, a brilliant friend pointed out the Kafka trap, giving me the clarity I needed to respond effectively.

Why This Matters for Autistic People

As Autistic folks, we often face unfair assumptions and stereotypes about how we communicate or interact. Kafka traps exploit these stereotypes, making us feel like we have to defend our very existence or methods of communication. This is emotionally exhausting and ultimately unproductive.

By learning to recognize Kafka traps, we can protect our energy and focus on meaningful conversations with people who engage in good faith. Not every argument deserves our time or emotional labor, especially when the deck is stacked against us from the start.

Final Thoughts

If you find yourself in a Kafka trap, remember: you don’t owe anyone a response that validates their harmful framework. Your time and energy are valuable, and walking away from a no-win situation is not a loss—it’s a victory.

The next time someone tries to bait you into this kind of argument, recognize it, name it, and reclaim your peace. Let’s save our energy for building connections and communities that truly value and respect us.

Have you encountered Kafka traps in your conversations? Share your experiences in the comments—I’d love to hear how you navigated them.

Autistic Poetics: Drown My Eyes

I’ve just read Autistic artist and researcher, Elinor Rowlands’ new article, “Beauty in the Gothic: Forms of Autistic Aesthetics” in Ought: The Journal of Autistic Culture. My first response is that I am blown away by Rowlands’ art and want you all to go savor what is linked in to their essay. My second response I share here: Rowlands’ work adds to the body of writing that validates my own work.

[image: artwork of a person with flowing hair that blends into tree branches and natural elements, contemplative, reading a book. Generated by MidJourney on the prompt “autistic art and literature”]

I write in trees and snails and fungus and nourishing rot

When I was first told I’m Autistic and I was going through that phase of re-examining my entire life through a new lens, I thought, perhaps, I don’t write like an Autist. Information was hard to come by back then, but what I’d seen so far suggested that Autistic people aren’t creative, don’t use metaphors, have very rigid, noun-centered communication styles. 

My writing often pulls images from the natural world. I rake through the lush loam of my imagination, turning over trowels full of thoughts, unearthing the connected roots of disparate trees, thick trunks of information contributing to the mycelial tangle of ideas. 

As it turns out, my writing is very autistic. I also write extremely long sentences, indulge in comma splices, sentence fragments, multiply nesting parentheses, and intentionally repetitive phrases. I could stim on the word “and” for an entire page.

These elements are not just stylistic choices; they reflect how I experience and interpret the world. Too often, editors remove these elements, standardizing my words, lining my writing up with grammar school style guides, thinking they’re making my work more readable. Editors, especially (though not always) allistic editors, want to make my writing more “streamlined” and “normative” They’re red-penning and erasing my identity as it manifests through my words. 

My repetitive phrases are like stimming in writing—they bring me comfort and help me communicate more authentically. And while I worry about my nature metaphors, fearing they’re as overblown as the interior decorator in the film, Devil’s Advocate, gushing about the “undulating acanthus leaves”, my connection to the body of my Earth is identity-level. These are Autistic ways of being on the page. This is my voice. 

Elinor Rowlands’ “Beauty in the Gothic: Forms of Autistic Aesthetics”

Elinor Rowlands’ article explores how autistic artists use stimming and nature to express themselves. They talk about stimming as an artistic methodology. Rowlands says, “Stimming itself connects beauty or art into the echo of the self, seeking out vibrant colors and wild landscapes such as spread out beaches with rough tides breathing on the sand”. Those words lap against my shores. Writing is fullbodymind work for me and the ebb and flow of the wild places wash words through my body in cold, brackish streams.

Rowlands also writes about intuition in Autistic artistry. “For autistic artists who use stimming in their artwork, intuition plays a key role”. This is so true for me—my intuition guides my writing, and I don’t know what words I will use until they appear on the page, channeled through the stim of my fingers on the keyboard, the words pounding through my bloodbeat. When Rowlands says, “Stimming becomes a source of power and magic, revealing ancient languages sourced by embodiment and bodies, historical chants and new geographical worlds”, they have sent Autistic ways of meaning-making afloat. Their work lands dead center of my writer’s altar.

Julie Brown’s Writers on the Spectrum

Julie Brown speculates autistic influences in literary writing. Brown notes, “Verbal repetition is well established as both a vital feature of autism speaking and a vital feature of literary and scholarly writing”. It’s not just a quirk or bad writing, but a meaningful part of how I embody on the page.

Brown also looks at writers using nature metaphors through an Autistic lens. She mentions, among other references, how Thoreau’s detailed observations of Walden Pond reflect his sensory perception. Brown calls this connection to nature Autistic, writing specifically about sensory-rich descriptions found in the works of autistic authors and authors Brown speculates as having been on the spectrum.

Julia Miele Rodas’ Autistic Disturbances

Julia Miele Rodas’ writes about Autistic voice from the perspective of poetics. Poetics is the study of the art and technique of crafting language. Poetics maps the stylistic elements of language onto deeper meanings and modes of communication. 

Rodas emphasizes the importance of verbal repetition and echolalia, which are often misunderstood, as distinct elements of Autistic poetics. She writes, “Verbal repetition offers all the joyous potential of LEGO blocks: why build detention centers when, given autism’s ‘poetic proclivity,’ people could use repeating forms and components to compose villanelles?”. I find this reframing empowering with respect to my own writing and validating the ways I engage with the repetition of my Autistic friends who are more vocally echolalic than I.

Rodas also talks about stimming as an artistic expression. She writes, “The autistic manner of speaking is once again constructed as threat and challenge, ejaculation, obscenity, rudeness— all one”. The directness, urgency, and repetition of Autistic speech and writing are devalued by those who don’t understand our poetics. 

M. Remi Yergeau’s Authoring Autism

Where Rodas examines the poetics of Autistic speech, Yergeau uses the lens of rhetoric to explore the value of Autistic stimming and repetition. They argue that stimming is a meaningful form of communication, writing, “Stimming, also known as self-stimulation, is an expression of embodied autistic semiosis that communicates sensory significations otherwise pathologized within neurotypical semiotic domains”. 

Semiosis is the process of creating meaning through signs and symbols. One Autistic friend communicates by playing a song over and over at someone, meaningful communication embedded in the lyrics. A friend’s son plays videos of commercials to tell his mother things. I have a friend who repeats a comforting litany of phrases, seeking engagement with others who will go through the script with him when he is feeling anxious. These stims and repetition are communication, are meaningful. Of course our art is structured from similar drives. Why wouldn’t it be? All art — not just art that uses language — is communication.

Yergeau also discusses the importance of repetition in autistic rhetoric, saying, “Rhetorical schemes are inventive schemes, ways of coming to knowledge through habit, compulsion, or echoing”. I repeat because it’s soothing. I repeat because it has artistic merit. I repeat because it’s a way to communicate that cannot be accomplished without the repetition. I repeat as a way of coming to knowledge surrounding that idea around which my repetition spirals.

Ralph James Savarese’s See It Feelingly

Savarese, English professor and the father of Autistic poet D.J. Savarese, writes about his experiences reading literature together with autistic readers. Savarese highlights how rhythm and repetition in literature can provide comfort and a sense of order, much like stimming. He writes, “At least one study has shown that metrical poetry recitation—specifically, hexameter verse—‘exerts a strong influence on [respiratory sinus arrhythmia, or RSA],’ which is low in autism and other conditions marked by anxiety, through cardiorespiratory synchronization”. The rhythms of stimming, of art, of repetition literally calms Autistic hearts.

Savarese also writes about the sensory engagement and embodiment of Autistic readers, quoting poet Tito Mukdhapadyay with whom Savarese read Moby Dick, “The habit of making marks, the habit of looking at these marks, the habit of fondly rediscovering them, and the habit of looking at them even more when my visual surroundings become complicated and drown my eyes—habit provides a modicum of comfort”. Tito writes about using writing as more than a form of communication: as a touchstone for keeping himself grounded in a chaotic world.

Closing the loop

Exploring Elinor Rowlands’ article and these four books has been incredibly validating for my writing style. They highlight how stimming, repetition, and nature metaphors are not just quirks but meaningful expressions of my autistic experience. These works challenge both the ableist prescriptions for speech and the normative editing practices that seek to erase these elements from writing. This collected body of research and writing advocates for a greater appreciation of diverse forms of art and expression. As an autistic writer, it’s empowering to see my intuitive and sensory-driven style reflected and celebrated in these texts. May more listeners and readers, more therapists and teachers, more editors and publishers come to value the unique voices of autistic speakers, typers, and writers, fostering greater inclusivity and diversity in art and its reflection, life.

Works

Brown, Julie. Writers on the Spectrum: How Autism and Asperger Syndrome Have Influenced Literary Writing. Jessica Kingsley Publishers, 2010.

https://www.goodreads.com/book/show/7020782-writers-on-the-spectrum

Rodas, Julia Miele. Autistic Disturbances: Theorizing Autism Poetics from the DSM to Robinson Crusoe. University of Michigan Press, 2018.

https://www.goodreads.com/book/show/40153853-autistic-disturbances

Rowlands, Elinor. “Beauty in the Gothic: Forms of Autistic Aesthetics.” Ought: The Journal of Autistic Culture, vol. 5, no. 2, 2024, pp. 39-44.

https://scholarworks.gvsu.edu/ought/vol5/iss2/6

Savarese, Ralph James. See It Feelingly: Classic Novels, Autistic Readers, and the Schooling of a No-Good English Professor. Duke University Press, 2018.

https://www.goodreads.com/book/show/38396133-see-it-feelingly

Yergeau, M. Remi. Authoring Autism: On Rhetoric and Neurological Queerness. Duke University Press, 2018.

https://www.goodreads.com/book/show/33673918-authoring-autism

Should You Write a Memoir?

The Atlantic published an article today, titled “Why You Maybe Shouldn’t Write a Memoir”. The author, a Harvard professor who writes about how to be happier, uses scientific research about self-referential SPEECH to try to dissuade people from WRITING about their lives. This is really sloppy work, Prof!

A person, viewed from the shoulders down, is wearing red plaid sneakers, a dark shirt and shorts. They are sitting cross legged on the grass at sunset and writing with a pen in a journal.

He writes that people’s lives are boring and not worth reading about. He says that telling our story will make us less happy. He strongly insinuates that people get addicted to talking about themselves and it could be a sign of a mental illness.

What if writing and publishing articles that tell people their lives are boring and mis-use science to “prove” that writing about their life is bad for them…what if *that* is a sign of a mental illness? (I’m not interested in flinging diagnoses around, but seriously…what is healthy about discouraging people from creative pursuits?)

If you want to write about your life, write about your life! Don’t even worry about whether you will publish it or not: the act of writing about your life can INCREASE your happiness and self-understanding.

This goes doubly for every neurodivergent person reading my words. Write your Autiebiography. Write your ADHD memoir. Write your Tourette’s tales. The world is just beginning to realize how much it does not understand neurodivergent people and the more of us who write about what it is like to live in our neurotypes, the more people will be able to offer us the levels of understanding we need and deserve.

So, I’m going to comb through this article and talk about some of what is very wrong about it.

WHY IS THE ATLANTIC ARTICLE SO WRONG?

The author’s first piece of evidence that it would be bad for you to write a memoir is that your life is boring. My counter: says who? Good writing can make anything interesting. And you are never required to try to publish your memoir anyway.

Who are you writing your memoir for? If it’s for yourself or your family, it will not be boring because the only people reading it will be people who care about you. They will want to know how you feel and what you have experienced because they want to know you.

If you’re writing a memoir for the world, to help them understand something about your life or lives in general, you can hire developmental editors and polishing editors and book doctors to make sure your story gets the telling it deserves. You can join writing groups and swap stories with other sensitive writers and help each other workshop your writing.

There is no reason to assume your memoir will be boring! If someone (like this Atlantic author) tries to convince you that your life is too boring to write about, just say something like, “thank you for your input” and then cheerfully ignore what they said. Their opinion of your life is what is boring to me. I would rather read 50 pages about what you like to eat for breakfast than read another article that tells people their lives are too boring to make good stories from.

So he segues from telling you how boring your life is, to saying maybe while you’re at it, shut up. The entire rest of the article is about TALKING about yourself. What a bait-and-switch that is: the title of the article lies. It’s not at all about writing a memoir! But the author frames his article about not TALKING too much about yourself as an argument for why you should not WRITE about yourself and that is just flat-out wrong.

So I’m not going to engage with his study of people telling their stories on social media. I’m not going to engage with his descriptions of what parts of the brain are activated when you talk about yourself. If you actually worry that you talk too much about yourself and would like to curb that habit, his article is probably fine.

But do not let his article dissuade you from WRITING about your life because that is a healthy and good activity that will enhance your self-understanding and, yes, your happiness. Instead of continuing to focus on the bad Atlantic article, let me tell you a little bit about why you *should* write your memoir, if you’re feeling like that’s something you’re interested in doing (or are already doing. Or have already done!)

MEMOIR WRITING CAN BE TRANSFORMATIVE

Dr. Diana Raab, author of Writing for Bliss: A Seven-Step Plan for Telling Your Story and Transforming Your Life, writes in her Psychology Today blog: “Writing our memoirs can help us reclaim our voice after it’s been taken away or silenced by difficult circumstances or traumas.”

While autobiographical writing is not the same as therapy, it can open our eyes to new perspectives within ourselves. Writing the stories of our lives can help us find threads of meaning in what seems like swirls of chaos.

MEMOIR WRITING CAN BE HEALING

Dr. James Pennebaker, a psychology professor at the University of Texas at Austin, has extensively researched “the power of expressive writing in helping people cope with upheavals” (quoted from his Amazon bio page). Pennebaker says: “Months after people had written about traumas, over 70 percent reported that writing helped them understand both the event and themselves better.” (From pages 139 and 140 of Pennebaker’s 2016 book, “Opening Up by Writing it Down: How Expressive Writing Improves Health and Eases Emotional Pain”)

Pennebaker writes that one potential cause implicated in the development of PTSD is the inability to “translate traumatic experiences into language” (145). Pennebaker cites the research of Jonathan Schooler into language and memory, writing, “when we convert an image in our minds into words, it fundamentally alters the way the image is stored.” (145)

According to Pennebaker, writing about our traumatic experiences helps to dissolve them in a way, loosening their grip on us. I have experienced this effect in both writing and speaking: when I put words to my suffering, my suffering is less.

MANY PROFESSIONALS ENCOURAGE MEMOIR WRITING

While I’m not digging into the research presented in the Atlantic article, I feel like the author cherry-picked the studies he put forth. Many more studies say that writing AND talking about your life can help you heal and become happier. Not only do many professionals encourage autobiographical writing, there are several professional organizations dedicated to promoting healing through writing.

The Center for Journal Therapy (CJT) promotes the use of journaling as a tool for healing and personal growth. They offer training and certification programs for professionals and resources and support for those who journal. CJT emphasizes the power of the written word to help people process their emotions, explore their experiences, and develop greater self-awareness.

The National Association for Poetry Therapy (NAPT) encourages autobiographical writing through the art of poetry, applied in a therapeutic setting. NAPT also offers training and certification programs for professionals and resources and support for people who want to use poetry as a tool for personal growth and healing.

Additionally, the National Association of Memoir Writers (NAMW) emphasizes the healing power of memoir writing on their website. If you’d like to dig into their resources, I recommend starting with this free e-book, Memoir Writing as a Healing Journey.

DON’T STOP WRITING ABOUT YOUR LIFE

My bottom line, with respect to the Atlantic article: don’t let the author’s negatively stop your writing. It doesn’t matter whether you publish or not, keep writing. It is good for you to write about your life: past, present, and future. If you’re not sure where to start, pick up a workbook, attend a workshop, hire a professional, look for free programs (your local library branch is a great place to start looking.) Lighthouse Writers in Denver, Colorado has an ongoing writing workshop called Hard Times that has some meetings online. It might be a good fit for you.

But whether you seek help in writing, look for a group of people to write with, or take the page on alone, don’t stop writing. It does you good! And if you choose to seek publication, your words could help so many people feel less strange, less alone. And never mind that Atlantic article, because there is far more research pointing to the opportunities for autobiographical writing to make you happier.

Mirror Pronouns

An image of a person inside a mirror, reaching out to shake hands with a person standing in a field with trees. They are clearly different people but both share a similar gender presentation.

Among the questions I get asked most often: what are your pronouns?

I’m usually asked by people who want to quote me in something they’re writing or want to know how to introduce me for a webinar or presentation I’m part of.

I have layers of pronouns, including a set of “professional pronouns” I use when doing public work Iike writing or presenting. At the core, my pronouns are mirror pronouns.

What are mirror pronouns and why do I use them?

I came up with the term “mirror pronouns” in 2018, when I was rehearsing for roles in the upcoming production of Eve Ensler’s Vagina Monologues at Naropa University. I had been on testosterone for a year and a half by that point and had reached a stage in my body’s changes where strangers routinely called me “he” and “sir” about 90% of the time.

Three of us had met at someone’s house to rehearse the choreography for a sketch we were doing together (the cute little one about what your vagina would wear and say). My fellow actors were referring to me as “she” and “her” during our rehearsal and I couldn’t help noticing the warm feelings I had around that. I found those feelings confusing, because I really don’t like it when cis men call me “she” but I felt so included, so seen, so loved when this cis woman and this non-binary person who used “she/they” were both calling me “she.”

After much soul searching and journaling, I realized my gender is relational. I had been shying away from the term “genderfluid” without understanding why. It’s because I *am* genderfluid, but that word alone didn’t feel like my word. When my companions used their gendered pronoun to refer to me I felt seen and had a sense of belonging.

I don’t have a gender. I also don’t identify as “agender” because, like “genderfluid” it doesn’t feel like a word that really communicates who I am. When I am alone, I don’t experience myself as having a gender. I’m not even sure what gender is…until I discovered that my gender is relational, I wasn’t sure anyone had a gender. It was just something I had to trust because other people communicated gendered experiences.

Gender is constructed and mine gets constructed in relationship. My core gender drive is belonging and when I am with someone and feel accepted by them, I experience my gender as being the same as their gender. If they use a different pronoun to refer to me, they construct another layer of my gender. For example, I have a dear friend who is a butch woman. When I am with her, I experience myself as having the same blend of masculine and feminine energy that she puts out. She enjoys my masculine presentation and refers to me as “he”. That adds an overlay, kind of like a theatrical gel sheet that changes the color of a spotlight or footlight. I am still that light that is her gender and I am also shifted to a masculine hue by her loving use of “he” pronouns. When I am not interacting with her, that light turns off and the gel filters nothing because I don’t have my own gender.

I also have professional pronouns, which are “plural they”. I am not a multiple system, yet my professional “they/them” is plural because, as a writer and speaker, I am reflecting the genders of my audience. My audience is “plural they” and so am I when I am entertaining, educating, validating, etc. a group of other people.

Crowds are overwhelming for me when I am not separated by the role of serving them or by an actual physical divider like a stage or podium. When I am serving a group — as a speaker, as a facilitator, etc. — the distance makes a sort of bubble that keeps me calm and grounded. But when I am in the middle of a crowd, like when I’m shopping, for example, it is overwhelming to my senses and psyche.

Some of my overwhelm in crowds is caused by having some of my senses intensified by my autistic neurology: so many smells, so much motion, people moving around unpredictably. I have Central Auditory Processing Disorder (CAPD) so all the words being spoken are just a blur to me. I don’t have “cocktail party ear” so in crowds I am simultaneously overwhelmed by too much sound and Hard of Hearing because I can only understand written or signed language with a few snatches of words anytime I’m able to lipread (which is spotty and inconsistent for me but I have learned that I do rely heavily on lip reading to understand people in noisy environments.)

I am also overwhelmed by crowds because I have prosopagnosia (face blindness). I become anxious because I feel like I don’t know anyone, I don’t know if there is someone there I *do* know but do not recognize. What if someone I don’t want to talk to is there and sees me and I end up in a conversation with them before I realize who they are? (This happens to me a lot) What if someone who has stalked or threatened me is there and I can’t see them? (This has happened to me before.) Will someone become angry with me if I don’t greet them properly? And if I’m there with someone, I cling to them ridiculously, for fear that they will slip from my line of sight for half a second and I won’t be able to find them again.

But once I realized how relational my gender is, I started paying attention to my gender feelings in crowds and realized how much “noise” there is for me there, too. Sometimes I joke that I have to use the family/accessible toilet because I am disabled by having “too much gender”. But that joke is based on my reality of actually experiencing too much gender when I’m embedded in a crowd. As a metagender Autist, I’ve found my dysphoria can often be drowned out by everything from autistic super-senses to trauma responses, all of which shout more loudly than dysphoria, confusing me. But crowds are dysphoric for me because the relational gender pull is coming from so many people in so many directions at once it throws me into shutdown.

So there’s a little bit of my history with relational gender and mirror pronouns. Life has been a long journey of discovery for me, with new insights unfolding all the time. I’ve noticed that Autistic people tend to keep developing for the entire trajectory of our lifespan, compared to neurotypical people who tend to be pretty settled in to their identity by age 25 and generally don’t shift very much after that age (although, of course, there are striking exceptions. Speaking of groups in the aggregate will always leave out the outliers. I try to avoid speaking about groups of people for that reason: I root for the underdog and back the outlier every time.)

I cherish that lifelong capacity for growth in myself and those around me. All of which is to say that it was a long path to get here and I can’t predict where I will be in another 10 or 20 years, if I’m still alive. All of this hard-won self-knowledge could shift again. I may be destined to spend my whole life in “figuring it out mode.”

And that’s a great thing.

What I tell people when I introduce my pronouns while facilitating peer support groups for Autistic Trans/Non-binary/GNC folks: I accept all pronouns offered in love, or at least without malice. I don’t have any pronouns, so feel free to use whichever feel right to you. I feel especially seen if you use mirror pronouns, which is using your pronouns to refer to me, but I know pronouns can be hard for some people, so don’t worry. Use the pronouns that come first to your mind when you type or speak about me and they will be the right ones. Unless you’re coming at me with hate, you literally can’t get it wrong.

Taking the PDA Questionnaire – Part One (of Five)

I’ve been taking a deep dive into PDA recently. I’ve known about it for a very long time, maybe 15 years, but have mostly ignored it because the name is so ugly and the things written about it by professionals have not resonated for me at all.

But since I’ve been listening to people who identify as having a PDA profile, I’m seeing more and more things I relate to. I took a PDA questionnaire written by people with PDA and I scored in the range that says I probably have PDA….but so many of the things I said “yes” to are descriptions of my trauma responses or descriptions of what it’s like for me to have both autism and ADHD.

Feeling even more confused about what PDA actually is or is not, I decided to make this series of posts where I respond to each question on the questionnaire in more detail. If you want to answer the questionnaire for yourself before reading my responses, you can find it here: PDA Test for Adults

Before I go into the questions, I want to emphasize that I am not saying PDA doesn’t exist. I’m also not saying it does exist. The traits people describe are real and people have (or should have) the right to self-identify autonomously. The label PDA seems to be helping many people understand themselves and that is something I always support.

I am not sure the PDA label is right for me, though, both because as I took the questionnaire the first time I kept feeling that the traits being described were due, in my case, to other causes. And also, I don’t want to take on a label that is so pathologizing the first word in it is “pathological”. But I wanted to be clear that it is not my intention to erase others as I explore these traits in myself.

There are 50 questions, so forgive me for my short answers. I am responding to the questionnaire in a series of five posts so I don’t have to respond to all 50 in one sitting.

Post Index (to be filled as I go:

  • First ten questions (this post) (2 Yes, 7 No, 1 what is this question asking me?. The yes answers were due to: one I don’t know and one that is part because of long covid and part because of dysgraphia)
  • Questions 11-20
  • Questions 21-30
  • Questions 31-40
  • Question 41-50
  • Running total of yes answers so far: 2
  • Do you find it difficult to do the simple things that other people seem to find easy? (My answer: what does this question mean?)

Right off the bat, the questionnaire hits me with the kind of question I have a hard time answering. This is too vague. Do you mean tying your shoes? Figuring out if a word is a noun or an adjective? Figuring out how I’m supposed to respond to the question “how are you?” from a stranger?

This is a yes from me if I think about things like:
– working a 40 hour work week
– ignoring bullies and continuing to go where they are (including work and school)
– being on time anywhere, ever (I am time blind and have to set several phone alarms (“two hours until X” “one hour until X” “30 minutes until X” “15 minutes until X” “X” – with “X” being specific so I know what the alarm is for) or I will just accidentally blow everything off, including stuff I really wanted to do.

  • Do you dislike praise? (My answer: NOPE)

Absolutely not. Sometimes I feel a little bit awkward, because I have imposter syndrome. But I adore praise and I keep the best of it in a little file to cheer myself up when I’m feeling blue. Earned praise feels wonderful.

  • Do you find it harder to do tasks that you have to do as opposed to optional tasks? (My answer: NOPE)

It’s the opposite for me. I find it hard to squeeze in the things I want to do because I have such a heavy sense of responsibility about things I have promised to do. So I prioritize work for others and feel driven to show up for respite sessions or group facilitation. My own work, like working on the novel I’m writing, working on my art skills, studying Esperanto, take a back seat. Even eating and bathing have to wait in line for the times that haven’t been promised to work.

  • Do you find it more difficult to complete tasks when people are watching? (My answer: NOPE)

I feel like I remember having this more as a kid than now. When I think about something like writing in public so people can watch how I write, what I edit in or edit out, and generally observe my process, I don’t feel any discomfort or stress. Maybe it’s because I’m a ham. But the same with drawing while someone watches. A YouTube person said they don’t like when people watch them put on their make-up. That never bothered me when I wore makeup (I pretty much always put it on with someone watching or at least seeing me, because I’d go to the bar and put makeup on in the dressing room before work.)

  • Do you feel a need to take charge but dislike being placed in charge? (My answer: NOPE)

I only feel a need to take charge when things are chaotic and confused and no one else is actually in charge. The only thing I dislike about being placed in charge is if it’s done without asking me first and getting my consent. But if someone says, “Max, we want you to be in charge of X. Will you do that for us?” 9 times out of 10 I will say yes. I know that I’m an acceptable leader. I’m good at delegating according to people’s strengths (and asking them if they accept the task). I’m good at directing my energy toward making the thing happen and stepping out of the way instead of trying to center everything around me as some leaders try to do. I don’t particularly have any stress around leadership (with consent).

It was about this time I was starting to think this PDA concept was not a good fit. It was so far outside my own life experience, I was shocked when questions suddenly started hitting.

  • Do you dislike being rushed? (My answer: oh HELL yes)

This one hits one thousand percent. I have had horrible meltdowns in the middle of someone trying to rush me into or through something. Being rushed feels miserable to me. I remember once I took off my watch to wash dishes at church and forgot it by the sink. I got home and mentioned it and suddenly everyone around me was shoving me out the door to go back and get it while I protested that the building would be locked up by now (it was). And then they wanted me to just go into our hang out time like that, still wearing my church clothes, feeling the adrenaline of being rushed. I yelled at everyone and sent them away to hang out without me because they weren’t listening to me and were saying my church clothes were just fine (I didn’t care about fashion. I just wanted to get out of my nice clothes before I ruined them by playing in them!!) and I wasn’t getting a chance to explain myself or even just sit down and take a breath. And the ritual of changing out of my good clothes and hanging them up and putting on casual clothes was an important part of transitioning to a different activity and I felt squished and pushed and ignored and talked over and mostly just super rushed by other people to do the things they wanted me to do.

So, yeah. This question stresses me out just answering it. Is this PDA? I don’t know. It doesn’t seem that pathological to me to want to change my clothes and sit down for a minute before being rushed right back out the door and then rushed into an activity I was not prepared for because I was forced to leave the house without the opportunity to get a day bag of stuff I would want to have with me while I was stuck in someone else’s car. That’s another thing I hate: I’m very picky about whose car I get in any more because when I am not the person driving I have zero control over where we go and what we do and I end up getting stuck someplace with no way to get back home. I have hitchhiked home because I was stuck and didn’t want to be there and no one else cared.

This doesn’t feel like a pathological avoidance of demands to me. This feels like me not wanting to be forced to be super uncomfortable for no good reason. I will be uncomfortable if it helps someone else. But I hate being forced to be uncomfortable because what I need is being perceived as an unnecessary burden that is interrupting their party time. Does that make *ME* the pathological one??

  • Do you feel unsure of how you will react in a situation, despite past experience? (My answer: no)

I don’t think so. I often tell people I don’t know how I will respond, but that is only with respect to situations I haven’t been in before so I really don’t know how I would respond. I tend to feel pretty solid in my knowledge of myself and my understanding of how I will approach a situation I’ve been in before. Every once in a while I do surprise myself, but I generally feel like I know myself well and know what to expect. When the way I will react is different from past experiences, it is because I have thought about that situation and planned what I would prefer to do and then I go into that situation again, waiting to see if I fallback to old patterns or find the courage to try to new reaction. That’s about as “unsure” as it gets for me.

  • Do you feel like others are always wrong, even though you know logically that isn’t true? (My answer: nope)

Nope. Others are not always wrong. On most topics, others are mostly right. When I logically believe someone is wrong, I also feel that they are wrong. When I logically know people are not wrong, I don’t feel like they are wrong: not then and especially not always. I can’t remember ever feeling this way.

  • Do you dislike imposed routine? (My answer: only if I actually don’t like the thing being imposed on me, so no.)

I’m going to assume that “imposed” means someone else is forcing it on me? I hate when things I don’t want are done to me without asking me first to get my consent. For example, I went to a school that made my class schedule for me. I complained because they took me out of Spanish class and put me in French class for whatever reason. But I had been studying Spanish in school for at least five years by that point and I did not want to stop studying Spanish! I complained and asked, moving my way up the power hierarchy, until I found someone willing to switch me back to Spanish.

I didn’t get control over any of the other classes chosen for me and I didn’t care. I only get upset about routine being forced on me when it’s something I don’t like. I didn’t care one way or the other about the other classes. They were all okay enough. I only got upset and dug my heels in when they made a choice for me that I distinctly didn’t want. I actually thrive with routine, so if I’m not getting enough structure imposed on me from outside myself, I start creating routines myself, in order to ground me in space time.

The only routines I don’t like imposed on me fit under other categories: Routines that are too tightly planned and make me rush from one thing to the next. Routines that are built around more than I have to give: like the 40 hour work week that will grind me into nothing very fast. Routines built around things that take a lot more from me than they give back yet I was never asked if I would accept that responsibility.

  • Do you/have you ever struggled in work/school due to the amount of work required of you? (My answer: yes)

Absolutely yes, but not (that I’m aware of) because of PDA. I do not have enough physical bodily energy to work a 40 hour week ever since getting COVID on February 15, 2020. I literally, physically do not have the energy. I can actually *do* 40 hours worth of work in many areas (writing, for example), but I cannot work for 40 hours out of the 168 hours in a week. I just get a lot of work done in shorter bursts of time, and it evens out somewhere along the line.

As for school, again the answer is yes but not because of PDA. I have dysgraphia and any situation where I was required to write a lot by hand was impossible. I got shouted at in the Navy over not being able to do ten pages of handwriting a day. I got in trouble with every teacher ever because I barely did any homework or schoolwork because I wasn’t allowed to type (and we didn’t start using computers until I was 15 and even then, only in computer class and I still wasn’t allowed to type my homework because “handwriting is an important skill you will need for your entire life!”)

So there are the first ten questions. Future posts will address the rest of the questions. I may do a sixth wrap-up post summarizing what I’ve learned from this series. I also would be happy to add a list of useful resources in the sixth post if people feel like sharing them with me as I go through this experiment/experience.

Thank you and stay tuned!

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