Unstrange Mind

decoding adult autistic meltdowns

Tag: pathology paradigm

A Bridge Between Silos

October 5, 2025 /
Image description: A large natural stone arch spans between two rocky cliffs in Virginia. The arch is made of gray and tan limestone, with green trees growing along the top and on both sides. The view through the opening shows a bright, cloudy sky surrounded by dense forest.

The Child No One Wanted in Class

A recent New York Times article (October 1, 2025) suggesting autism needs to be broken into two categories cited “a survey of 800 families, conducted this year by the National Council on Severe Autism, [which] found that 80 percent had been told their children were too disruptive even for classrooms and services tailored to students with autism and other disabilities.”

While no one would accuse me of having “severe autism,” I, too, was an unwanted, disruptive presence in my classrooms. My kindergarten teacher loved me, even though I bit her when she tried to pull me out from under the table where I was hiding. My first grade teacher hated me and requested I be removed from her classroom and put in special education. She called me the R-word. 

When I think back on elementary school, it’s hard to remember what happened, where. I changed schools so many times I’d been in at least six different schools by fourth grade. Sometimes there were other reasons for shuffling me around, but I was removed from many classrooms because teachers couldn’t handle me. No one knew what to do with me. 

I’d slither on the floor like a lizard. I’d meow like a cat. I’d take any opportunity to hide under a table where it was darker, quieter, less overwhelming. My emotions erupted straight through my skin with no regulator, no buffer. My outbursts and disruptions became louder and more appalling the older I got. By middle school, I’d gotten myself expelled from the entire county school system. There was no place back then for someone who was both academically gifted and behaviorally disabled. 

They have a word for it now: twice exceptional. 

I hope they have more than a word. 

I hope kids like me actually have a place now. 

A Spectrum With No Middle

I grew up to find “my people”… sort of. Maybe. 

There’s a current cultural argument: autism should be split into “profound” and “non-profound” autism. Researchers have joined the debate, studying where to draw the line and how to justify it. Quoted in the Times article, Ari Ne’eman, long-time Autistic self-advocate, compared the attempt at separating autism into two camps to trying to “cleave a meatloaf at the joints.” 

I don’t belong on either side. Will that cleaver chop me in two?

My life keeps proving what the research hints at: the middle of the spectrum is where services, language, and understanding fall apart.

Services for “profound autism” will not help me. I speak, I write, I drive. I don’t require 24/7 supervision. I remember the days when those services were the only thing there was. I was drowning in my own life and no one would help me because my IQ is higher than 70. These are services only available to people who can’t ask for them. 

But support and services for “non-profound autism” leave me behind, too. I have a hair-trigger nervous system. I become “profoundly” dysregulated and cannot “behave appropriately” in systems where no one is trained on the nuclear level meltdowns that overtake my bodymind in times of intense stress. My sensory sensitivities are calibrated so finely that I can barely stand to be around people (despite being an extrovert who loves human connection.)

I belong to the messy middle. We fall through the cracks.

The Lived Middle

When I read about the proposed split, profound vs. non-profound, I can see what each side is trying to describe, but (like many Autists…most Autists?) I live in the space between them. I don’t need someone to monitor my every move for my safety. But I do need someone who understands that my nervous system runs like a live wire, and that a “simple” social misunderstanding or a flickering fluorescent light can send me spiraling into hours of recovery.

I can cook, drive, write, edit, and facilitate groups. I can also lose the ability to speak for days. I can manage complex projects for work, then fall apart because someone touched me in the grocery store. When I melt down, my brain doesn’t politely announce, “please excuse the emotional disturbance.” It shuts down my access to my prefrontal cortex (while leaving my brain’s language center dismayingly untouched!) and throws me into a physical storm that feels like experiencing every threatening emotion in one giant tsunami.

I am neither the non-speaking child in a residential facility nor the worker who has kept the same job for twelve years (though not, I should note, without suffering or struggle). I am the missing middle case: the one who gets lost when systems are built for either the child who can’t communicate or the adult who can network.

If autism is divided, where will people like me go? “Profound” autism categories will not include me because I can speak. “Non-profound” services will exclude me because I cannot perform neurotypicality sufficiently to keep a job more than a few months. When I am regulated, I can explain my meltdown with elegant clarity; when I am in it, all I can do is scream obscenities. This same body holds both truths.

The danger of the cleaver isn’t just that it divides. It crushes the connective tissue. We mid-gradient people prove that autism isn’t a tidy collection of buckets but a terrain of overlapping ranges. We are the fault lines that make the whole visible.

The Scientific Lens, the Polygenic Divides

A 2025 study in Nature Medicine put forth the thesis that autism looks different depending on when someone is diagnosed. Researchers tracked thousands of children and found two main developmental arcs: one that emerges early, and one that surfaces later. The early group, usually diagnosed around preschool age, showed strong signs of dysregulation and social difference from the start. The later group, those not diagnosed until adolescence or adulthood, looked more “typical” in early childhood, then began to struggle as social life grew more complex.

Genetically, those two arcs map onto different constellations of traits. The early group is tied to genes that influence social communication and sensory processing. The later group is tied to genes overlapping with ADHD, PTSD, and depression. According to the data, the two profiles are distinct enough that they could almost be seen as different “autisms.” Yet even the researchers left an undefined window between ages six and nine, a no man’s land where neither trajectory cleanly applies.

I land in that overlap zone. I have an early-identified nervous system carrying the later-diagnosed cluster of comorbidities. My life is where the two curves meet and tangle. I was initially diagnosed at seven (squarely between “early” and “late,” in the study’s framework) yet I live with both the extreme emotional dysregulation the study defined as a hallmark of early diagnosis and the ADHD, PTSD, and chronic struggle with anxiety and depression that the study found more common among later-diagnosed people. I’ve always been the statistical noise that refuses to average out.

The scientists used the word polygenic to describe how hundreds of genes combine to shape each person’s developmental path. I think of it as poly-everything: polytraumatic, polysensory, polymodal. I’m a multivariate outlier. My neurology carries multiple histories at once: genetic, experiential, cultural. I am early-emergent in my meltdown profile, late-emergent in my self-awareness, and forever trying to reconcile a body that feels ancient with a mind that keeps discovering itself anew.

When researchers talk about these two genetic “factors,” they still speak as though everyone fits neatly into one or the other. But so many of us are hybrid systems: early storms that never quieted, layered with late revelations. The data call me interstitial. I call it being alive at the seam where categories unravel.

Science likes to sort, but the closer researchers look, the more the borders blur. Each new study meant to clarify autism’s architecture ends up revealing new subtypes, new overlaps, new contradictions. Attempts to cage the spectrum only unravel into a cluster of intersecting constellations. Advocates of the “profound autism” label say there is not one autism. In truth, there are not two autisms, either. There are many autisms, coexisting and often colliding in combinations inside a single person. The data are only beginning to catch up to what many of us have lived all along: there is no single arc, no single story, no single way to be Autistic. It’s Ari’s meatloaf with traits thoroughly mixed throughout, not lined up as discrete slices.

An Ethical Gap: Diagnosis Without Disclosure

I was diagnosed at seven but first told at thirty-four. For twenty-seven years, I lived with the label but not the knowledge. The word autism lived in files, not in my awareness. Others had access to information that could have helped me make sense of my life, but no one handed me the map.

When researchers talk about age of diagnosis, they assume the person diagnosed actually knows. But there’s another trajectory that rarely enters the data: early-diagnosed on paper, late-diagnosed in life. On a chart, I’d be plotted among the “early” cases; in lived time, I belong with the “late.” With my mixed collection of traits, I belong nowhere. 

That’s one ethical vacuum in the whole conversation about splitting autism into “profound” and “non-profound.” What good are new categories if the people inside them still aren’t told who they are? The system can label a child, publish the data, even claim early intervention success — but if that same child grows up without language for their own difference, what intervention was that, really?

Diagnosis ≠ disclosure ≠ support. 

Knowing about me is not the same as letting me know myself.

The Human Cost of Polarization

Both sides of the split debate are reacting to genuine pain. The parents of children with high support needs see the more verbal Autists growing in numbers, eclipsing children like theirs, putting forth an ideology that they fear will leave their children behind. They’re fighting neglect in a world that offers little safety net, little respite, and too few clinicians willing to take on complex cases.

Neurodiversity activists, on the other hand, are fighting erasure. For years they were told they weren’t “really” Autistic, that they were just eccentric or socially awkward. Meanwhile, glossy “Autism Awareness” campaigns featuring celebrities peddle a narrative of tragedy, comparing autism to diabetes and cancer.

But between those two righteous causes lies a widening gulf that swallows anyone whose life defies both archetypes. When advocacy polarizes around who suffers “enough” to be considered truly Autistic, people like me flounder with few places to turn for useful help.

I was the child too disruptive for classrooms and too verbal for compassion. I lost school placements not because I couldn’t learn, but because no one knew how to teach someone like me. I carried untreated trauma for decades because professionals saw only defiance, not distress. Even now, the daily work of emotional regulation: holding myself together through noise, touch, light, and human unpredictability? It’s invisible labor few realize I’m slogging through every day. I don’t fit either narrative. I suspect most Autists don’t. Who is researching that?

For the “profound” camp, I’m too capable. For many in the “neurodiversity” camp, I’m too volatile. But my existence proves both realities true at once: the need for safety and care, and the right to self-definition. The binary breaks apart where I live.

My Life as a Bridge

When I call myself a bridge, I mean the structure, the connective tissue that holds two sides in relation. The middle is not an absence but an architecture. People like me show where the spectrum’s supposed endpoints bend toward each other.

My neurology is hybrid, not broken. It offers a way to see autism as an ecosystem rather than a spectrum line. Forests don’t divide cleanly into “trees” and “not trees.” They contain gradations of shade and soil, roots interlaced underground. Autism is like that: an ecology of traits and bodies that shape one another. To understand the whole, you have to study the overlap zones, the places where categories blur and organisms coexist.

If research and policy treated those overlaps as instructive instead of inconvenient, support could become scalable and individualized rather than categorical. A system built for complexity would ask different questions: not “Which kind are you?” but “What do you need, and what helps you thrive?”

This is an ethics of care that designs for the edges and intersections, not the average case. The bridge perspective doesn’t erase difference; it honors it by keeping the structure intact for everyone who lives between.

Reclaiming the Middle Ground

I think of that child on the classroom floor, hiding under a table because it was the only place that felt safe. The lights were too bright, the noise too sharp, the air thick with other people’s expectations. No one knew what to do with that child. The teachers wanted them gone. The files called them disruptive. But they were trying, in the only language they had, to build a bridge between their bodymind and the world.

What if the field saw that child not as an outlier, but as the center? What if the messy middle was understood as the heart of autism rather than relegated to its margins? Every diagnosis, every theory, every classroom could start from that question: what happens when we design for the ones who don’t fit cleanly anywhere? 

What if we center them in the story of their own life?

The future of autism can’t belong to the extremes alone. It belongs to us all: to those clearly defined and to those who live in the thresholds, translating between worlds, proving that connection itself is a form of intelligence. The spectrum’s strength has always been its range, and its hope lies in those who refuse to disappear into binaries.

That child is still here, learning to stand in the open. The world is finally beginning to meet them halfway.

It’s almost enough.

Works Cited

Ghorayshi, A. (2025, October 1). Should the autism spectrum be split apart? The New York Times. https://www.nytimes.com/2025/10/01/health/autism-spectrum-neurodiversity-kennedy.html

Zhang, X., Grove, J., Gu, Y., Buus, C. K., Nielsen, L. K., et al. (2025). Polygenic and developmental profiles of autism differ by age at diagnosis. Nature Medicine, 31(2), 225–238. https://doi.org/10.1038/s41586-025-09542-6

Autism Is a Developmental Disability, Not a Developmental Delay

August 29, 2025 /

(And Certainly Not a Developmental Halt!)

A split image of a freeway on the left and a country road on the right
On the left, a busy multi-lane freeway carries heavy traffic beneath a sky filled with scattered white clouds. Cars stream in both directions, stretching toward the horizon. On the right, a narrow country lane winds through rolling hills covered in grasses and patches of wildflowers.

For maybe twenty years, I’ve been saying autism is a developmental delay, not a developmental halt. 

Something I read today helped me realize that autism isn’t even a delay. I’ve written and spoken of autism as a different trajectory, a separate road. When we fail to meet developmental milestones, it’s because we’re not traveling the same road. 

 But today it struck me: traveling a different road means we really can’t be called delayed. Are apples delayed oranges?

The freeway is built for speed. Smooth blacktop, painted lines, endless streams of cars all moving in the same direction, at the same pace, toward the same destinations. It’s efficient, streamlined, and relentless. You don’t stop to notice much out there—just keep your foot on the gas, eyes forward, merging when you’re told, obeying the rhythm of the crowd.

The country lane is another world. Winding, uneven, with dips and bends that make you slow down, sometimes whether you want to or not. The air feels different on a country lane. You see the hawks circling above the fields, the wildflowers that grow between cracks, the way the light shifts when a cloud drifts in front of the sun. It’s slower, maybe—but it’s also fuller. You’re not just getting from point A to point B. You’re in the middle of a living landscape, taking in every detail, whether you asked for it or not.

The “Frozen in Time” Hypothesis

I started thinking along these lines after reading Jordan James’s take on autistic development. His metaphor was stark: autism as a kind of halted growth, “frozen” at different ages because of reduced synaptic pruning. In his view, some Autists remain infants in certain ways, others linger in childhood, still others carry pieces of teenagehood into adulthood.

It’s not hard to see why that framing resonates with some of us. Many Autists do describe feeling “younger,” or “out of sync” with peers. There are moments when the world treats us as if we’ve missed a step in growing up—and sometimes, it feels true inside our own skin. The sense of living on a different clock can be powerful, even haunting. 

But the science behind this metaphor doesn’t hold up. As  Dr. Nicolás F. Narvaez Linares, a pediatric clinical neuropsychologist at the University of Ottawa, pointed out in a comment on LinkedIn, pruning differences are variable, inconsistent, and nowhere near enough to justify sweeping claims about Autistic people being ‘frozen’ in time.

Worse, this conclusion risks being deeply damaging.

Lifelong Growth, Not Arrested Development

I think it’s more complex than the “frozen development due to clogged synapses” picture suggests. My own life has been full of growth—sometimes painfully so. I have changed, reshaped, and unfolded uncountable times. And I keep doing it. I’ve seen the same in Autistic friends, colleagues, clients—people manifesting a wide variety of “flavors” of autism.

In fact, one of the sharpest contrasts I have noticed is this: many allistic people seem “done cooking” by their mid-twenties. Their personalities stabilize, their habits take shape, and their ways of thinking become more consistent. 

It’s probably no coincidence that 25 is the age when insurance rates drop and society starts treating people as more settled. For most, the brain has finished maturing, impulsivity fades, and people tend to become more predictable, less changeable. 

Meanwhile, we Autists keep shifting. Still evolving. Still surprising ourselves with new insights, new ways of being, new patterns of thought.

Yes, I’m often pegged as younger than I am. I still love toys and cartoons. I carry a streak of naivety (though tempered now by memories of deception and betrayal.) But that doesn’t feel like arrested development to me. Quite the opposite. It feels like an ongoing capacity for renewal, a thirsty sense of wonder, a willingness to grow that doesn’t run out just because I crossed some birthday milestone.

This isn’t a deficit. It’s a gift. Autists have the ability to keep developing and changing all the way to our deathbeds. We are not halted, we are not stuck. We are alive to growth in ways most freeway drivers were never shaped to be.

What the Delay Framework Costs Us

The problem with calling autism a “delay” is that it traps us in a story that was never written for us. If development is imagined as a ladder, with rungs spaced at predictable intervals, then the assumption is that everyone is climbing the same structure and should be climbing at the same speed. In that model, Autists are forever stuck—still clinging to the lower rungs while everyone else rises higher.

That picture is not only inaccurate, it’s dangerous. It feeds infantilization: the idea that autistic adults are “really” children inside, no matter how many birthdays we’ve had or how much wisdom we’ve gathered. It justifies treating us as less capable, less autonomous, less deserving of respect.

And it ignores what is obvious to anyone who actually looks at us: we have spiky profiles. A spiky profile means strengths and challenges—relative to the neuromajority—sitting side by side in one person. Advanced in some areas, slower in others. Sometimes dazzlingly so, in both directions:

You might find a ten-year-old Autist who can recite astronomical data with the precision of a graduate student but struggles to tie their shoes. Or an adult who navigates complex systems of thought yet finds a grocery store overwhelming. You might meet a non-speaking Autist who points at letters with an eloquence that stops you in your tracks, yet who is still treated like a toddler because their sensory and motor issues affect when and how their bodies can show up. 

This isn’t “delay.” It’s not a single clock running late. It’s an entirely different rhythm, unfolding unevenly, sometimes ahead, sometimes behind, sometimes on a completely different path, always patterned in ways that don’t climb the standard ladder in the standard ways.

Attention, Not Distraction

Autists aren’t delayed freeway drivers. We’re lane travelers. We don’t simply move more slowly on the same road; we move differently, on different terrain altogether.

On the country lane, you notice more. The road itself demands it. The texture of bark on the cottonwoods. The exact angle of sunlight through a cloud bank. The sound of gravel crunching under your tires, each stone distinct. What the freeway calls distraction, the lane calls attention. We are immersed in the details, saturated by them, compelled to take in the whole landscape.

This is one of autism’s great strengths: sensory depth, environmental awareness, the kind of noticing that catches what others miss. But that same fullness can overwhelm. Just as a country lane can’t handle the crush of freeway traffic without crumbling, autistic systems can be swamped when environments overload us with noise, demands, or relentless pace. That is where disability lives—not in some imagined lateness, but in the mismatch between our ways of perceiving and the structures we’re asked to navigate.

Spiky Profiles Are Terrain

The spiky profile only looks strange if you’re measuring it against freeway norms. From that perspective, it seems contradictory: advanced here, behind there, uneven all over. But on the country lane, the landscape isn’t supposed to be level. It has ridges and valleys, sudden overlooks, unexpected twists. The spikes are not flaws in the road—they are the road.

What’s called “delay” in one domain and “giftedness” in another are simply features of a different ecology. The unevenness is not a mistake to be corrected, it’s the terrain we move through and with. On the freeway, a sudden rise in the pavement would be a hazard. On the lane, a hill is part of the view.

The spiky profile means that Autists often defy simple labels. A person might compose music with exquisite precision yet struggle to keep their clothes clean. Another might master three languages while needing help to cross a busy street safely. These contrasts are not contradictions. They are part of the same pattern—the ridges and valleys of a life lived on a different road.

Different Roads, Different Rhythms

Autism isn’t about lateness. It isn’t about arrested growth, clocks that stopped ticking, or children hidden inside adult bodies. It’s about terrain. It’s about rhythms. It’s about sightlines that open in directions others don’t even think to look.

We don’t move along a single track of “normal development.” We move through our own ecologies—sometimes winding, sometimes steep, sometimes dazzling in their vistas. Our paths aren’t broken freeways; they’re lanes of their own.

Disability emerges when freeway systems are imposed on lane travelers. When schools, workplaces, and public spaces are built with only speed and sameness in mind, they leave no room for those whose journeys are richer, slower, or less predictable. That mismatch—between the way we are built and the way the world is structured—is what most disables us.

What We Bring Back

Freeways will always get you to the city faster. That’s their purpose: direct, efficient, predictable. But the country lane takes you somewhere else entirely. It winds through hidden valleys, past streams no map bothers to mark, into places you would never have found at freeway speed.

Autists are not late arrivals, forever catching up to the crowd. We are travelers of another road. Our journey is not defined by delay, but by difference—by the sights we gather along the way, the details we bring back, the truths we carry from landscapes most people never see.

Selective Neurodiversity in The Knowledge Gene: A Reflection on Inclusion, Contradiction, and the Limits of Evolutionary Framing

April 9, 2025 /

I recently read The Knowledge Gene by Lynne Kelly—a book that’s being praised for its big-picture attempt to explain the evolutionary roots of human creativity, memory, art, and knowledge. And, while I can see why it’s attracting attention, I finished it feeling unsettled.

Image description: A decorative image of a DNA double helix in warm earth tones, with glowing details and a textured background

There’s a lot this book gets right. Lynne Kelly writes with enthusiasm and deep respect for Indigenous knowledge systems. She pushes back against the rigid compartmentalization of Western education and highlights how oral cultures use art, music, movement, and landscape as memory technologies that have endured for tens of thousands of years. She makes a strong case for embodied, holistic learning—and she doesn’t just stop at theory. Her praxis includes lived experience, both her own and that of others. She references real people, including neurodivergent children, and allows their voices and interests to shape the narrative. That’s rare, and it’s worth applauding.

So yes—this book is written with good intentions. And yes—it reflects a growing awareness of the strengths and insights of neurodivergent people. But it also left me with the sharp sense that something was off. And the more I sat with it, the more I realized what I was seeing: selective neurodiversity. And this sort of pseudoneurodiversity is not aligned with the neurodiversity paradigm.

Kelly ceases to be neurodiversity-affirming when she codes how she frames NF1—Neurofibromatosis Type 1. In her telling, the NF1 gene is the “knowledge gene,” an ancient supergene that enabled humans to store and transmit complex knowledge through story, song, and spatial memory. But when that gene is damaged—i.e., when someone is born with the NF1 disorder—Kelly describes their brains as lacking the very capacities that make us human. She lists what people with NF1 are “missing”: musicality, rhythm, spatial reasoning, prosody, memory encoding, narrative flow. She mourns the “loss of creativity” in their minds. She calls it failure.

And in doing so, she draws a hard line: some minds are “creative,” and others are “broken.”

That framing might not have been intentional. It obviously doesn’t even feel harsh to so many reviewers. But it reveals a deep tension at the heart of the book: You cannot fully embrace neurodiversity while simultaneously holding one neurotype up as a “glitch in the human operating system.”

The neurodiversity paradigm, as defined by Dr. Nick Walker in her excellent book, Neuroqueer Heresies, is not a celebration of cleverness or creativity or savant gifts. It is a political and philosophical framework that asserts the equal legitimacy of all neurotypes—including those society devalues or fears. It’s not about which minds are useful to evolution. It’s about justice. It’s about recognizing that diversity in cognitive style is part of our species’ richness, not a problem to be solved or an accident to be explained away.

The Knowledge Gene engages with neurodivergence only when it fits a celebratory or useful narrative—autistic people with pattern memory, ADHD kids with high energy, nonverbal savants with encyclopedic recall. But when the differences are less easily romanticized, the language changes. And that’s where the book’s core contradiction lives: it wants to praise human variation, but only when that variation can be framed as genius.

What would a truly neurodiversity-affirming approach to NF1 look like?

It would start by centering the voices of people with NF1. It would ask not only what they struggle with, but how they see and know and move through the world. It would explore the unique experiences of those whose minds don’t align with dominant modes of expression—not as deviations, but as perspectives. It would recognize the ways that society disables people with NF1, through inaccessibility, stigma, and erasure. It would seek understanding, not explanation. And most importantly, it would refuse to define a person’s worth by their proximity to normative ideals of creativity or cognition.

The Knowledge Gene is a fascinating, ambitious book. It weaves together genetics, oral tradition, memory craft, and neuroscience in ways that are often insightful. But it stops short of the radical empathy that the neurodiversity paradigm requires. It points us toward a more inclusive understanding of how humans learn—but then turns away from the full reality of human variation when that variation feels inconvenient to the narrative.

And that, to me, is the missed opportunity. We don’t need more stories that divide minds into “working” and “failed.” We need frameworks that honor all our minds—and the many, many ways we remember, create, learn, and live.



Stop “Diagnosing” Donald Trump

February 2, 2017 /

campfire

[image description: a small campfire burning in the dark night. Copyright Sparrow R. Jones, 2017]


Everywhere I turn, it seems, someone is calling the current United States presidential administration “crazy” or “insane.”

Do you not realize that these are slurs along the lines of The R Word? Do you not realize that everything I have ever said about the R Word applies to the C word and the I word as well? Using words that describe vulnerable populations to describe the actions of those who are not members of that population who are engaging in behavior that displeases or distresses you is the verbal equivalent of picking up a disabled person to use them as a bludgeon. You’re not likely to hurt your target but you are crushing those of us who become your lazy go-to when you can’t find the words you really want.

“But wait!” someone always responds. “You don’t understand! He really is crazy! He’s got Narcissistic Personality Disorder! A psychology professor said so!”

First off, that professor was behaving unethically if they diagnosed Donald Trump without even meeting him.  There is a rule in the psychiatric professions called the Goldwater Rule, so called because it arose after similar speculations were made about Goldwater.  Section 7.3 of the APA Code of Ethics says:

On occasion psychiatrists are asked for an opinion about an individual who is in the light of public attention or who has disclosed information about himself/herself through public media. In such circumstances, a psychiatrist may share with the public his or her expertise about psychiatric issues in general. However, it is unethical for a psychiatrist to offer a professional opinion unless he or she has conducted an examination and has been granted proper authorization for such a statement.

That means that it is unethical for a professional to announce a diagnosis of Donald Trump. And if you are not a professional, you are not qualified to diagnose Donald Trump.  The only people qualified to determine if a person has a psychiatric disability are trained professionals and the individual themselves.  Furthermore, revealing a person’s diagnosis without their explicit permission is a violation of HIPAA regulations specifically and a violation of privacy in general. No one has the right to disclose another person’s medical information without their consent.

Secondly, if someone you view as having authority has told you that Donald Trump has Narcissistic Personality Disorder (NPD)  (or if you have taken it upon yourself to  lay-diagnose him as such), you are wrong.  The doctor who wrote the diagnostic criteria for NPD  has publicly stated that Donald Trump does not meet the criteria. Dr. Frances goes a step further and explains why these casual lay-diagnoses of public figures are so harmful. You really should read his words: This Doctor Nailed The Problem With Diagnosing Donald Trump With Mental Illness.

I have even seen some people suggesting we “push for Trump to submit to psychiatric evaluation.”  Forcing psychiatry on an unwilling person is the height of human rights violations.  I never thought I’d find myself in the position of defending and protecting Donald Trump, but society has put me here by insisting that the basic human rights we hold so dear do not apply to him. Call him evil, call him authoritarian, call him a fascist …. but do not suspend his human rights unless you are willing to see your own human rights suspended next.

It is unethical to diagnose a person without an examination, regardless of credentials or lack thereof.
It is a human rights violation to attempt to force a person to submit to psychiatry against their will. Some reading in the psychiatric survivor literature will help you to understand what a gross violation it is.
Fighting dangerous leadership by weaponizing psychiatry against the president will only serve to hurt vulnerable Americans as those arrows will be twisted by the government and turned against us.
We already have a Vice President who supports the use of involuntary “anti gay therapy” against minors. We do not need to use their evil tactics against them. We can fight evil without becoming evil.
Study authoritarian regimes in other countries and other decades and you will see psychiatry repeatedly being weaponized against the resistance.  Audre Lord said “the master’s tools will never dismantle the master’s house.”  Nick Walker brought that philosophy into the battle against the pathology paradigm with the essay “Throw Away the Master’s Tools.”
Authoritarian dictators are the ones who routinely weaponize psychiatry to silence the Resistance. Those aren’t the tools we need to be using to dismantle the master’s house.

How We Teach Disabled People to Secretly Hate Themselves

November 5, 2016 /

This is a re-blog of a post originally made on February 26, 2016.

This blog post has been graciously translated into Russian by Neurodiversity in Russia.

self-doubt

image description: a silhouette of an agitated-looking person, surrounded by words of negativity and self-doubt, such as “deficiency,” “disrespect, ” “disconnection,” “weakness,” “rejection,” “abandonment,” “inadequacy,” and so on. Mixed in with these words is the word, “disability,” which does not deserve to be connected to words like humiliation, instability, inadequacy, and insignificance but still gets slipped into the mix unquestioned because society’s ableism is so deeply ingrained in our cultural views that it is virtually invisible.

It’s a fancy academic-sounding term: internalized ableism. It means feeling less worthy than others, ashamed of who you are, unwilling to stand up for what you deserve, or even hating yourself. And it’s so culturally supported by society that many people (including myself) can play host to ableist self-deprecation or self-loathing for years without even realizing it.

I have been working on my own internalized ableism for years and still keep finding pockets of invisible ableism in myself. Let me put that in more blunt terms: after years of working on loving and accepting myself, I still find entire areas of my life in which I have held myself back unnecessarily due to feeling unworthy on a fundamental level.

I’d like to share with you some of what I wrote on my private Facebook wall this week, to help you understand how damaging internalized ableism has been in my own life:

-=-=-=-

When my daughter died, there was a small voice inside me that said, “it might be for the best. You are poor. You are disabled. What kind of life could you have given her? There is a reason so many people in your life put pressure on you to abort her. Maybe keeping her was selfish. Maybe it’s better that she didn’t live. What right did you have to try to bring life into this world anyway?”

This is the first time I have fully admitted those thoughts in public. I tried once. I went to a meeting of Compassionate Friends, a support group for people whose children have died. I got the first sentence out, “I was thinking maybe it was for the best that she died…” When I was interrupted by the meeting leader.

He was angry. He shouted at me. He asked me if it was for the best that another member’s child had died in a fire, that one was murdered, that one had died from cancer, that one had been hit by a car. He shouted and shouted and there was no room for me to shout back, “I wasn’t talking about your children! I was talking about me and what a horrible mother I would have been. Maybe it was for the best because no one should have to have a mother like me!”

But I didn’t shout back. I cried. And I ran from the room. And I fell down in the parking lot because I was crying too hard to see. I banged myself up pretty bad, but it didn’t hurt. I was already hurting too much to feel it.

And here I sit, almost 22 years later. In the intervening years, I told myself that I didn’t really want her. I told myself that I didn’t want a child, that I loved my freedom too much to give it up. I reminded myself of all the sacrifices parents make for their children and how expensive children are. How expensive and noisy and messy and heart-breaking.

I congratulated myself for dodging a bullet and reminded myself how grateful I am to be unencumbered and not responsible for another human being’s well-being. And life. And suffering. Because if I had a child, they would just grow up to hate me for all my shortcomings anyway. They would hate me for bringing them up in poverty. And they would be ashamed of my disability. And I would be burdensome to them. And, knowing my genetics, they would hate me for the disabilities they were born with because I was too selfish to just not reproduce.

And the truth is that I mourn her every day. And the truth is that I mourn not becoming a parent. And the truth is that I watch my ovarian clock tick, tick, tick, seeing time running out and knowing there is never a “good” or “right” time to have a child, but that all the best times are behind me and I would be a fool to have a child now, at almost fifty years old, in poverty, living in a vehicle, only just barely starting to build a career, finally, after a lifetime of false starts and shredded dreams.

And I wish I had the courage and opportunity to be that fool.

And I know I won’t. Because I’m too scared, too poor, too disabled. And I would be a horrible mother. And my child would grow to hate me.

But I beg of anyone reading this, I beg of the world: there are younger people out there who would like to have a family but are being held back because they are disabled and people in their lives have taught them that they shouldn’t have children, that it would be wrong, that they can’t do it. Do not leave those young people to end up in twenty or thirty years where I am, wishing they could turn back the clock and have another chance.

Life’s own longing for itself. I missed my chance to fulfill it.

Don’t let that happen to today’s young, hopeful, disabled, would-be parents.

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Feeling unworthy to have a family and raise a child is only one example of internalized ableism. People with internalized ableism can subconsciously (or consciously) sabotage their chances for a better education or a better job because they feel unworthy. They describe themselves using medical language of pathology because they were brought up to refer to their minds and bodies with words of lack and brokenness only.

Some forms of internalized ableism superficially resemble high self-esteem until you scratch the surface. I meet people who refer to themselves as “high functioning,” which might seem like a self-esteem phrase until you look a layer deeper and see the fear of being mistaken for “one of those.” When ableism is leveled against other people with your same disability but different support needs, it is a sign of internalized ableism as well. Those who truly accept themselves as they are have no need to punch down – whether directly or indirectly – against those with the same disability. Accepting yourself means accepting others who are like you, not fighting to distance yourself from those who resemble you in some way.

I see people recoiling from the word “disabled,” as if it were a great insult. You are fighting the wrong demons. Instead of fighting against the valuable and useful word “disabled,” please fight against the underlying ableism that causes you to recoil in horror from the word, “disabled.” Instead, do something proactive to make the lives of disabled people better, happier, and more just. When you try to hide from the word “disabled,” you are only increasing the sum total of ableism in the world and that is what will truly hold you or your child back in life. Sadly, internalized ableism has held me back from so many things I wanted from life. It is a great injustice to allow rampant, half-hidden ableism to squash even one more dream. Root out ableism, both in society and within yourself, and let’s stamp it out forever.

ABA

October 20, 2016 /

misty summer sunrise in maine

image description: An early sunrise in late summer coastal Maine, the sky streaked with orange and the crevices in the land filled with a river of mist. This side of the mist is a picturesque tool shed surrounded by carefully curated “wild” vegetation. Photograph copyright 2016 by Sparrow Rose Jones

This is a re-blog of a blog post originally made on 7 October, 2014. An edited version of this essay appears in the excellent anthology: The Real Experts: Readings for Parents of Autistic Children, edited by the incomparable Michelle Sutton and available for purchase from Autonomous Press or a library or bookseller near you (and if it is not available at a library or bookseller near you, please do ask them to provide copies. Thank you.) This essay also appeared as a guest post on the Diary of a Mom blog.

Content note: compliance-based training, labeled as therapy. Lasting trauma and PTSD from ill-advised treatments. Sexual abuse and rape. The lasting effects of ABA (Applied Behavioral Analysis). The risk of being told “not my ABA.”

This week, I watched a community implode. I’m not going to talk about that, though, because it was very painful to watch people I love being treated so badly. But a lot of the implosion centered around a topic I do want to talk about. That topic is ABA – Applied Behavior Analysis, a common type of therapy for Autistic children. I watched people fight around in circles, chasing their metaphorical tails. It will take some time and lots of words to unpack this topic, but I hope you will stick with me on this because it’s so important and there is a lot that needs to be understood here.

Here’s the argument in a nutshell. It gets longer, angrier, and much more detailed than this, but I am exhausted just from reading the fighting, so I’m boiling it all down to two statements. And both statements are correct.

Autistic adult: “ABA is abuse.”

Parent of Autistic child: “I’m not abusive and my child is benefitting greatly from ABA therapy.”

You read me right: both statements are correct. That is part of what I need to unpack today. I think the best place to start is with the fact that both people above are using the term “ABA”, but what they are actually talking about are usually two different things. First we need to define ABA.

Well, actually, first I want to put people at ease. Parents — it’s got to be painful to feel like a whole group of people are ganging up on you and telling you that you are abusing your child. You love your child. You want the best for your child. You are spending thousands of dollars out of pocket to try to give your child the best possible chance in life. You worry about your child. You feel like you never even knew what love was until your child came along. You are not abusing your child. And if something you are doing is harming your child, you want to know about it and stop it. It hurts to be told that you are abusive toward the child you love so much.

And my fellow Autistics — you grew up feeling picked apart. You were subjected to things that harmed you. You still have PTSD today from things that may have been done with your best interests at heart but were actually quite damaging. You don’t fit in to the world around you and the adults who were charged with your care when you were growing up were stumbling around in the dark when it came to trying to figure out how to raise a child like you were. It is triggering to see that so many of the things that hurt you when you were growing up are still being said and done to and about children who are so very much like you were when you were their age. You want to stop the cycle of pain and you want children to grow up happy, healthy, and loved. It frightens and angers you to see many of the “best practices” that Autistic children today live with.

And there is a good chance that the two of you — the Autistic adult and the parent of an Autistic child — are not even talking about the same thing when you say “ABA.” Major organizations (particularly Autism Speaks) have lobbied hard for Medicaid and insurance companies to cover ABA therapy for Autistic children. As a result, many therapists now call what they do “ABA,” even in cases where the actual therapy is very different from genuine ABA, in order to have their services covered by insurance. It’s similar to the philosophy of therapists I’ve known who don’t believe in diagnosing mental illness but put a name on their patients’ struggles anyway because many insurance policies only pay for therapy if the treatment is for a diagnosis listed in the DSM. That’s the main point that I wanted to make, but there’s still a lot to say on this topic.

If almost everything is being called “ABA” then what is actual ABA? And why do Autistic adults say it is abusive? What sort of warning signs should parents be watching for? What is harmful about certain practices? Those are a lot of questions to answer, but I will do my best. Bear in mind that I’m not a therapist — ABA or otherwise — and I’m not a parent. I’m one Autistic adult, one person coping with therapy-induced PTSD, one person exhausted by the all-out war I see every day between people like me and people who love people like me, one person who wants to see a better world for everyone (but, I admit, especially for Autistic people.)

ABA was developed by Dr. Ivar Lovaas. As a 1965 Life Magazine article explains, the core theory of ABA was that a therapist, “forcing a change in a child’s outward behavior” would, “effect an inward psychological change.” The article says, “Lovaas feels that by I) holding any mentally crippled child accountable for his behavior and 2) forcing him to act normal, he can push the child toward normality.”

Much has changed, but this core premise of Lovaas’ work remains solid. ABA’s core belief is that forty hours per week of therapy geared toward making a child externally appear as “normal” as possible will “fix the brokenness” inside that made the child behave that way. ABA believes in an extreme form of “fake it until you make it,” and because it is behaviorism at its most pure — that is, a psychological science that treats internal processes as irrelevant to function (Lovaas said, “you have to put out the fire first before you worry how it started”) — it treats behavior as meaningless and unwanted actions rather than as communication.

This approach is troubling for many reasons.

ABA strongly emphasizes the importance of intensive, saturated therapy and insists that it is crucial to get 40 hours a week of therapy for very young children. Think for a moment how exhausted you, a grown adult, are after 40 hours of work in a week and you will begin to understand why we get so concerned about putting a three-year-old child through such a grueling schedule. Being Autistic doesn’t give a three-year-old child superpowers of endurance. Forty hours a week of ABA is not just expensive, it is painfully exhausting. ABA maintains a schedule like this with the intention of breaking down a child’s resistance and will.

I understand that you are afraid for your child. Their future is unknown. You are worried about their ability to live a fulfilled life. You are worried about their ability to have self-supporting work and be taken care of after you pass on. And I understand that this fear, coupled with a deep desire to give your child the best you can give them, can lead you to accept the ABA attitude of “more is better.” But stop a moment and think about the capacity for sustained focus of the average three-year-old and consider what a therapy that tries to double (or more) that capacity is doing to a child. If you stress a child out or even traumatize them with extreme therapies, you are paradoxically increasing the chances of incapacitating PTSD in the child’s future. Yes, you want your child to develop as much as they are able to develop and you want them to enjoy their life and hopefully provide for themselves, but exhaustion and trauma are not going to aid those sorts of development.

Worse than the exhaustion of so many hours of therapy, though, is the heavy focus on making a child “indistinguishable from his peers.” The main goal of ABA is to make a child LOOK normal. This is insidious for a few reasons. first, it is the best way to get the parents to continue to co-operate with the therapists for many years. Of course you are going to be moved to tears if the therapist gets your child to look you in the eye or say “Mommy” to you or sit at the table and eat a meal without fidgeting or melting down. Of course you will feel like the therapist is making progress and healing your child. That is a very natural response. So you will see the progress and you will want to continue with ABA therapy and you will be very defensive when adults Autistics online suggest that what is happening in your home might be a bad thing. What was bad were fights every mealtime. What was bad was never hearing your child’s voice. What was bad were the judgmental or pitying stares you and your child got when you went out in public and people saw your child spinning around or flapping her hands or becoming so anxious you were forced to leave your groceries unpurchased and flee the store.

But if your child is getting classic ABA therapy, what you are seeing is an illusion. And what looks like progress is happening at the expense of the child’s sense of self, comfort, feelings of safety, ability to love who they are, stress levels, and more. The outward appearance is of improvement, but with classic ABA therapy, that outward improvement is married to a dramatic increase in internal anxiety and suffering.

ABA therapists are trained to find out what your child loves the most and hold it ransom. Often, it’s food. If your therapist suggests withholding food as a form of behavioral therapy, run screaming. That is harmful. If your child’s therapist will not allow you to remain in the room during a session (they will usually tell you that your presence will be a distraction that will keep your child focused on you instead of on the therapy they need to be paying attention to) that is a big warning sign. If you are able to witness your child’s therapy sessions and your child is spending a lot of time crying or going limp or flopping on the floor or showing signs you recognize as indicators of anxiety or fear, beware the therapy. If the therapist insists on pushing forward with the therapy when your child is crying or going limp instead of giving your child recovery time, run screaming. Therapy that trades your child’s sense of safety in the present for a promise of future progress is exactly the sort of thing that Autistic adults mean when they talk about abusive therapy.

Therapy should make your child better, not traumatize them, possibly for many years, potentially for the rest of their life. A therapist might tell you that “a little crying” is a normal thing, but I was once an Autistic child and I can tell you that being pushed repeatedly to the point of tears with zero sense of personal power and knowing that the only way to get the repeated torment to end was to comply with everything that was asked of me, no matter how painful, no matter how uneasy it made me feel, no matter how unreasonable the request seemed, knowing that I had no way out of a repeat of the torment again and again for what felt like it would be the rest of my life was traumatizing to such a degree that I still carry emotional scars decades later. It doesn’t matter whether the perpetrator is a therapist, a teacher, a parent, or an age-peer: bullying is bullying.

In my opinion, the goal of therapy should be to help the child live a better, happier, more functional life. Taking away things like hand flapping or spinning is not done to help the child. It is done because the people around the child are uncomfortable with or embarrassed by those behaviors. But those are coping behaviors for the child. It is very important to question why a child engages in the behaviors they do. It is very wrong to seek to train away those behaviors without understanding that they are the child’s means of self-regulation. When considering whether you have made a wise choice in what therapy you are providing your child or not, you want to always remember a few cardinal rules: behavior is communication and/or a means of self-regulation. Communication is more important than speech. Human connection is more important than forced eye contact. Trust is easy to shatter and painfully difficult to re-build. It is more important for a child to be comfortable and functional than to “look normal.”

Work on things like anxiety and sensory issues first. Work on getting better sleep (both you and your child). Things like eye contact can come later, much later, and only if your child is comfortable with them. There are work-arounds. Lots of people fake eye contact. Lots of people have good lives with minimal or no eye contact. But forcing a child to do something that is deeply painful and distressing for no reason other than to make them look more normal is not just unnecessary, it is cruel.

I live two blocks from a behavioral clinic and I frequently walk several blocks out of my way to avoid walking past it because of the kinds of things I have seen when walking past the clinic. Let me tell you about the last thing I saw there, the thing that made me decide that I would rather walk an extra half-mile than risk seeing more ABA therapy on the sidewalk in front of the clinic.

A mother and father came out of the clinic with a little girl, around 7 years old by my best guess. Mother said, “Janie (not the actual name), look at me.” Janie didn’t look at her mother. The mother said to the father, “you know what to do,” and the father took hold of Janie and turned her head toward mother, saying, “look at your mother, Janie.” Janie resisted, turning her head away and trying to pull out of her father’s hands.

Mother crouched down and Father lifted Janie’s whole body up, laying her across Mother’s knee, face up. “Look at your mother, Janie,” father said. “Look at me, Janie,” Mother said. Janie began to whimper. Her body was as stiff as a board. Father held her body firm and Mother took hold of Janie’s head, “look at me, Janie,” Mother said.

I was glued to the sidewalk. I didn’t want to see any more but I couldn’t look away, couldn’t walk away. Janie began to moan and thrash her body. Father’s hands held her body steady as she kicked and flailed. Mother’s hands held Janie’s head steady. Both kept urging Janie to look at her mother. Janie’s moans turned to screams but neither parent let her go.

Finally, Janie’s entire body went limp with defeat. She apparently made eye contact because Mother and Father began to lavish praise on her. “Good girl, Janie. Good eye contact. Good girl. Let’s get some ice cream now.” Janie’s limp body slid to the sidewalk where she lay, sobbing. Father picked her up and carried her to the car, the whole way praising her submission. “Good eye contact, Janie.”

a drawing of eyes looking away with the caption forced eye contact hinders human contact

(This image – a drawing of eyes looking away with the caption
“Forced eye contact hinders human contact” – is a sticker and is also
available as a light t-shirt or dark t-shirt in adult and children’s sizes.)

What did Janie learn that day? I’ll give you a hint: it was not that people are more trusting of those who make good eye contact. It was not that she will appear more normal and thus fit into society better if she makes good eye contact. It wasn’t even that Mom really loves it when Janie connects with her through the eyes like that.

Janie learned that adults can have whatever they want from her, even if it hurts and even if they have to hurt her to get it. Janie learned that her body does not belong to her and that she has to give others access to it at any time, for any reason, even if she wasn’t doing anything that could hurt herself or others. Janie learned that there is no point in resisting and that it is her job to let others do what they want with her body, no matter how uncomfortable it makes her.

You may think I’m exaggerating or making this out to be more extreme than it is, but stop for a moment and imagine years of this therapy. Forty hours a week of being told to touch her nose and make eye contact and have quiet hands and sit still. A hundred and sixty hours a month of being restrained and punished when she doesn’t want to touch her nose and being given candy and praise when she does touch her nose for the 90,000th time. Nearly two thousand hours a year of being explicitly taught that she does not own her body and she does not have the right to move it in ways that feel comfortable and safe to her. How many years will she be in therapy? How many years will she be taught to be a good girl? To touch her nose on command? To make eye contact on demand? Graduating to hugs, she will be taught that she is required to hug any adult who wants a hug from her. She will be punished when she does not hug and praised and fed when she does.

And who will protect her from the predator who wants to hug her? Who will teach her that she is only required to yield her bodily autonomy for her parents and therapists but not for strangers? What if the predator turns out to be one of her therapists or parents? How will she resist abuse when she has had so many hours of training in submission? Therapy is an investment in the future, but ABA therapy is creating a future for Janie of being the world’s doormat. Is that the future Janie’s parents want for her?

If your child’s therapist believes it is more important for your child to comply with every command than to have any control at all over his or her body, run screaming. And don’t forget that a layer of training does not change the underlying neurology. ABA uses the same methods and theories as dog training and if I train my dog to shake hands, it doesn’t make him more human. It just makes him a dog who can shake hands. Similarly, if you train an Autistic to make eye contact and not flap their hands and say “I love you, too” and stay on task, it just makes them into an Autistic who can fake being not-autistic with some relative measure of success. Underneath the performance is still an Autistic brain and an Autistic nervous system and it is very important to remember that. Being trained to hide any reaction to painful noises, smells, lights, and feelings doesn’t make the pain go away. Imagine years of living with pain that you have been trained to hide. How long would it last before you broke down? Some Autistics last an amazingly long time before they break down and burn out.

And intensive ABA therapy will also teach a child that there is something fundamentally wrong and unacceptable about who they are. Not only is that child trained to look normal, they are trained to hate who they are inside. They are trained to hate who they are and hide who they are. They will work very hard to hide who they are, because they have learned to hate who they are. And as a result, they will push themselves to the brink of destruction. And when they finally crumble from years of hiding their sensory pain and years of performing their social scripts and blaming themselves every time a script doesn’t carry them successfully through a social situation, they will be angry at themselves and blame themselves for their nervous breakdown and autistic burn-out.

All those years of ABA therapy will have taught them that they are fundamentally wrong and broken; that they are required to do everything authority demands of them (whether it’s right or wrong for them); that they are always the one at fault when anything social goes wrong; that they get love, praise, and their basic survival needs met so long as they can hide any trace of autism from others; that what they want doesn’t matter.

Now you know what to watch for. Your child’s therapist may use the term “ABA” in order to get paid, but they might not be doing these harmful, degrading, abusive things to your child at all. If your child’s therapist is respecting your child, not trying to break down the child’s sense of self and body-ownership, treating behavior as communication rather than pointless motions that need to be trained away, valuing speech but not at the expense of communication, giving your child breaks to recover and not over-taxing their limited focusing abilities . . . then they can call their therapy anything they want to, but it is not ABA. (And hold on to that therapist! They are golden!)

And I hope that the next time you hear an Autistic adult say that ABA is abuse, you are compassionate. Remember the suffering so many of us endured. Know that we say those things because we love your children and want to help them. We do not say them because we hate you and want to call you abusers. We don’t hate you at all and we want to help you. Sometimes we are clumsy in how we go about it, because, well, we are Autistic and communication difficulties are part of that package. But know that when we attack ABA, we are not intending to attack you. We want your child to sleep through the night and laugh with joy and become toilet trained (on whatever schedule their bodies can handle — don’t forget that we tend to be late bloomers), and have a healthy, happy, productive, love-filled life.

We want you to rejoice in parenting and connect with your children on a deep and meaningful level. When an Autistic adult says “ABA is abuse,” you might be tempted to hear, “you are abusing your child.” But that is not what we are saying. Next time you hear an Autistic adult say “ABA is abuse,” please hear those words as, “I love you and your child. Be careful! There are unscrupulous people out there who will try to convert the fear you feel for your child’s future into money in their pocket at the cost of your child’s well-being.”

And if you are a therapist and you are upset when we say “ABA is abuse”, know that we are not talking about you . . . unless you are using shock punishments or making children endure long hours of arduous therapy beyond their ability to cope or teaching children that they do not have the right to say who can have access to intimacy with their body or not (and forced eye contact is a particularly nasty violation of a person’s control over their bodily intimacy.) If you are not the kind of therapist who we are talking about when we talk about the harm of therapy, then we are not talking about you! Thank you for being one of the good guys. We need more like you. Teach others what you know. Spread the love and help change the world, please!

Thank you for reading all of this. I know it was a lot of words, but this is such an important topic. The children are the future and I don’t have words to explain how painful it is when I see Autistic adults being verbally bullied and abused because they are trying to help the children by helping parents to understand more about the lived experience of autism and more about the kinds of things that can be very harmful to Autistic lives. I had over a decade of therapy in my childhood and much of it was not good therapy and I am explicitly damaged because of it. When I say ABA is abuse — when we Autistic adults say ABA is abuse — we are speaking from a collective wisdom gained through painful experiences that have left lasting scars on us. We don’t want anyone else to have to go through the pain we have gone through. Please respect where we are coming from and please do not add to the trauma by attacking us for trying to help others. Thank you.

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Edited to add: if you would like to see some video examples of helpful vs. harmful therapies, check out this blog post I made a month later on that topic:

Helpful vs. Harmful Therapies: What Do They Look Like?

What Is a Disorder?

October 17, 2016 /

Smilodon Fatalis

Smilodon fatalis, the sabre-toothed cat. The name means “fatal knife-tooth” and this was the most exciting creature I’d spotted on my travels since the Borophagus hilli, “Bone-crushing Dog” I saw at the Hagerman Fossil Beds in Idaho last year. I discovered this graceful yet skeletal creature at the I-79 Southbound West Virginia welcome center. Photograph copyright 2016, Sparrow Rose Jones.

Yesterday, I posted an essay about Autism Speak’s new mission statement, and in that essay I wrote: “We are different and disabled but not disordered and we do not need you to accept a disorder; we need you to accept us.”

A reader commented:

Great article overall, but I’m a bit confused as to your meaning of ‘we are not disordered.’ As a person who does have multiple disorders aside from being autistic, I’m worried about what this implies when it comes to people with mental illness and other neurodiversities beyond autism; that maybe it is a ‘throwing one group under the bus to support another’ thing. I can’t imagine you meant that on purpose, and it certainly could be me misconstruing the meaning (it may have just meant to remember we are people before we are ‘disordered’) but I thought I’d point it out in case it was confusing to anyone else as well.

You are correct, dear reader, I did not intend to throw anyone under the bus. And I did not throw anyone under the bus, intentionally or accidentally. Since you are confused, I decided to make a fresh blog post so I can explain my perspective more thoroughly.

Before I start in to topics like “what is a disorder” and “why do I say that autism is not a disorder” and “mental illness” — because that’s a lot of ground to cover — let me make one quick side note first:

The Language of the Neurodiversity Paradigm

There is no such thing as “neurodiversities” unless you are speaking in the same sense as modern physicists when they talk about “universes.” Neurodiversity is, to quote Nick Walker’s excellent and foundational essay: “the diversity of human brains and minds – the infinite variation in neurocognitive functioning within our species.” You can see why the plural form, “neurodiversities” doesn’t make sense….unless one is speaking of neurodiversity among multiple species or among multiple peoples, such as humans on Earth and denizens of some as-yet undiscovered planet with which we might establish communication in the future.

I think what you meant was “neurodivergences.” I apologize if I appear to be nitpicking your word choice, but the language of the neurodiversity paradigm and of the neurodiversity movement (two different things – see Nick Walker’s essay. It’s a must-read, really) are still new enough and the topic is important enough that we must all work hard to use this language accurately while these ideas are still taking shape in society’s general consciousness. The linguistic work we do today will save us so much difficulty and miscommunication in years to come. I am multiply neurodivergent and the accurate use of this language is very important to me because it provides such clarity in communicating my lived experience.

Now, on to the actual point of this essay.

What is a Disorder?

I can’t say enough good about Nick Walker’s work and if you have a couple of hours to watch his presentation from February 23, 2015 at CIIS, you should watch this video. I definitely recommend it, both for understanding why I say autism is not a disorder and for exposing yourself to Nick Walker’s brilliance.

For those who don’t have time or data to watch the video, here is my summary of Nick’s points that pertain to what I am discussing in this essay (there is so much more in his presentation than this. I love Nick Walker’s work so much. Every time I take the time to listen to or read Nick’s words, my entire world gets bigger. Nick Walker is like human LSD: he expands my consciousness every time I take a dose of him.)

The following paragraphs are in italics because they are my paraphrasing (and sometimes direct quotation) of what Nick Walker says in the above presentation.

Diversity is creative potential. Exciting new things are introduced to society by people whose minds work differently from the minds of those in the culture around them. All forms of diversity are subject to society’s power dynamics, which means that those whose minds are neurodivergent — whose minds work in ways that are noticeably different from the neuromajority — are pathologized and called disordered or ill. It’s just another social power dynamic and an oppression of a minority’s civil rights, just like what we’ve seen before around gender, sexual orientation, ethnicity, culture, etc. The dynamics work the same way.

Books like the DSM tell us that autism and other neurodivergences are disorders, but it’s important to remember that science has been used for a long time to justify the oppression of those who diverge in ways that society does not approve of. The oppression of neurominorities that comes from using science to describe us as “disordered” is the same pattern we have already seen so many times in the past in other groups who have struggled to assert their civil rights against a society that chooses to pathologize their existence.

Pathologization of “disorders” leads to a social urge to normalize those who have been considered “ill” or “diseased” because their brains work in ways that differ from the “straight and narrow” neurotype that society has chosen to label as “healthy” only because it is way that the majority of people’s brains work. The phrase “mental illness” is false and a scam. When these neurodivergences are labeled as illnesses, people are convinced that the way their brain naturally works is a disease. I’m not dogmatically anti-medication, but I’m anti-bullshit and I think the term “mental illness” is bullshit.

There are government labs where vials are stored. These vials have anthrax, small pox, measles, and other illnesses. You cannot have a “vial of bipolar” or a “vial of autism.” These do not exist outside the bodies and minds of the people who embody them. It’s us, not illness. When I say that “mental illness” is bullshit, I’m not saying nobody should ever take medication. If you are severely depressed and there is a drug that works for you and you want to take it? Go ahead. But you may need to visit a doctor in case of severe depression who can prescribe effective medications for the treatment. Also, you may need to look for a trustful pharmacy (similar to an online UK Pharmacy) for buying original medicines. Moreover, you may not have to call yourself “ill” in order to get the mind-altering drugs you want. I don’t think people should be involuntarily medicated, ever. But I’m all for consensual medication of anyone who wants it.

There’s a whole industry around selling these things as diseases and we live in a society that is increasingly hostile to carving out niches for people who function on different rhythms. When you honor your body and brain, Bipolar no longer feels like an illness. You’re surfing your neurology. How do you find the safe spaces to shape your life? If no one does it, it stays unsafe for people to do. The more people out there doing weird stuff with their brains and self, the more acceptable it becomes. We have an obligation to be really weird to make space for other people.

So there’s the background to my answer: what is a disorder? A disorder is an illness. I have some disorders – a connective tissue disorder that can be very painful, for example. But autism is not a disorder. Bipolar is not a disorder. Schizophrenia is not a disorder. There is no such thing as a mental illness because our mentation is our self and we are not ill. We are divergent members of a neurodiverse population that needs the full span of neurodiversity to fuel creativity, innovation, and the full expression of humanity.

Am I Throwing Anyone Under a Bus When I Say That Autism Is Not a Disorder?

I most definitely am not. I am not saying , “autism is not a disorder, but some other mental stuff is.” I’m saying exactly what I said in yesterday’s essay: “We are different and disabled but not disordered and we do not need you to accept a disorder; we need you to accept us.” I’m not saying other people are disordered; I’m saying Autistics are not. I’m not speaking for other people at all — it’s not my place to speak for other people … although I don’t believe in the construct of “mental illness” so if anyone is calling someone else disordered, it’s not me. I didn’t think I needed to make that explicit, but here it is explicitly stated now.

Am I Saying We Are People Before We Are Disordered?

No, I don’t engage in person-first language. If someone else wants to use person-first language to describe themselves, I will respect their choice, but I believe in identity-first language because I don’t believe we are disordered at all. There is no need for person-first language, in my opinion, because person-first language is designed to separate people from things that are deemed shameful or diminishing in some way. Autism is not a disorder, it is not shameful, it is not diminishing. I see no reason to use person-first language. In fact, person-first language inherently implies that there is a disease or disorder present in a person, so I find person-first language offensive when directed at me. As I said, I will respect someone else’s choice to use person-first language to describe themselves because people should have the right to self-identify in any way they choose. But person-first language is not appropriate for me.

So, no. I am not at all saying that we are people before we are disordered. I am saying we aren’t disordered and it is an oppression to suggest that neurominorities are disordered at all. We are people: Autistic, Bipolar, Multi-dimensional, Kinetic, Schizophrenic, and so on. If you are in one or more of these categories and you have accepted that you are ill, disordered, diseased …. know that you are not required to view yourself that way. You are not required to accept society’s labeling of you based on your divergence from the mainstream type of mind. You are fully permitted to embrace your natural mind, as it is, for the beautiful and creative brain you possess. read more about the Neurodiversity Movement and Mad Pride and rejoice in your uniqueness. Celebrate it. Help to forge new pathways for those who will come after you. The more that we accept and celebrate our uniqueness, the easier and safer it will be for future generations to be authentic to their natural bodies and brains.

I hope that my words are somewhat less confusing now.

 

 

 

 

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