Tag: adult autistics

An open gate — Open iron gates in a stone archway, leading from a shaded courtyard into sunlight.

The Protective Power of Timely Withdrawal

December 20, 2025 / unstrangemind

When Autistic people withdraw during a conflict, too often we are treated as a problem.

People assume we step back because we’re not engaged in the conversation or motivated to work through the conflict. Pausing a conversation gets read as avoidance. Creating distance is taken as a refusal to work things through. The underlying expectations are clear: Care looks like staying present. Responsibility means continuing the interaction without a break until it is resolved.

When an Autistic person withdraws, that choice is rarely understood on its own terms. It is labeled: avoidance, stonewalling, punishment, manipulation. These labels do more than just describe behavior. They assign intent and motive, turning a person’s decision to take time and space into a moral judgment against them.

For many Autistic people, however, timely withdrawal serves a different purpose. It is a way of re-regulating a distressed nervous system before full dysregulation takes hold. Withdrawing from conflict helps preserve clarity, reduce harm, and make continued relationship possible. What is often framed as disengagement is, in practice, a means of staying safe enough to remain connected.

What “Timely Withdrawal” Means

I’m not talking about disappearing, abandoning relationships, or refusing accountability. I’m not arguing for disengagement as an endpoint, and I’m not defending avoiding difficult conversations. The focus here is narrower and more specific: how and when stepping back and taking time to collect oneself can prevent harm rather than create it.

Timely withdrawal means choosing to create temporary distance before nervous-system overwhelm takes hold. It can look like pausing a conversation, leaving a charged environment, or taking space long enough for regulation to return. Instead of pushing through when capacity is already strained, timely withdrawal allows the nervous system to settle so that thinking, language, and judgment can come back online.

Timing is the key distinction. Stepping away early, while some capacity remains, is very different from being forced to endure an interaction past one’s limits. When withdrawal happens proactively, it functions as a stabilizing pause. The longer withdrawal is delayed, and the more regulation has unraveled before taking a break, the more reactive that withdrawal becomes. When that happens, the break itself is much less effective at preserving stability and safety.

The difference that makes withdrawal timely is not the act of pulling back, but the choice to step away sooner rather than too late.

The False Moral Binary

In most social settings in the country where I live (the United States), people seem to understand a simple rule about interpersonal conflict: staying with the conversation is treated as a virtue, while leaving is treated as a failure. Remaining engaged is associated with maturity, care, and responsibility. Stepping away, by contrast, is often read as immaturity, hostility, or a lack of commitment. This creates a familiar binary in which continued presence is assumed to be constructive and withdrawal is treated as suspect, regardless of what is actually happening for the people involved.

This binary rests on hidden assumptions about capacity. It assumes that everyone has equal access to nervous system regulation, verbal precision, and emotional bandwidth at all times. In reality, people differ widely in how they process stress, sensory input, and emotional intensity. For Neurodivergent people, the ability to remain present and articulate under pressure can fluctuate significantly. Treating “staying” and clear communication in the heat of the moment as things that should always be possible ignores these differences. It mistakes unequal capacity for unequal care.

For Autistic people caught inside this framework, conflict presents an impossible choice. Staying risks escalating dysregulation and loss of capacity. Leaving to prevent that escalation invites accusation and blame. One option is framed as a failure of self-control; the other as a failure of character. When both paths are punished, the problem is not individual behavior. The problem is the system that defines what counts as acceptable in the first place.

What Happens When Withdrawal Is Denied

For anyone, as stress increases, capacity narrows in predictable ways. For Autistic people, this effect is amplified. Most Autistic people reach high levels of stress with a lower threshold of input.

Sensory input can become overwhelming, making it harder to filter sounds, sights, or internal sensations. Verbal precision may decline, with language becoming slower, less flexible, or more effortful to produce. In some cases, the nervous system interprets the situation as a serious threat, and defensive language emerges: angrier or more forceful than intended.

Under this kind of pressure, attention constricts and response options narrow, making it difficult to track nuance or adapt in real time. These shifts are not matters of choice or attitude; they reflect how the nervous system functions under sustained load.

There is a common belief that sticking with the conversation will eventually lead to clarity or resolution. But once capacity has been exceeded, continued engagement rarely improves understanding or communication. More time and more pressure do not restore regulation. Instead, they tend to further tax already limited personal resources. In these conditions, persistence stops functioning as problem-solving and becomes additional strain on top of the original conflict.

When withdrawal is blocked or discouraged, escalation becomes more likely rather than less. Opportunities for early exit are replaced by forced endurance, increasing the chances of dysregulated responses that lead to negative attention and real consequences. Denying withdrawal can produce the very outcomes that are then judged and condemned.

Why Withdrawal Is So Often Misread

Many people are used to handling conflict through immediacy. There is an expectation that concerns should be addressed right away, out loud, and in the moment. Strong feelings are often met with direct confrontation, and staying in the conversation is taken as a sign of sincerity, care, and commitment.

Within this framework, withdrawal is easy to misread. A pause meant to reduce overload can look like silence. Taking distance to restore capacity can look like rejection or disengagement. When someone regulates by stepping back instead of pressing forward, that choice often doesn’t register as regulation at all. It registers as absence.

Most of the time, this misreading is not intentional. People interpret behavior using the norms they know. But intent doesn’t erase impact. When withdrawal is repeatedly interpreted as avoidance, punishment, or lack of care, real harm can occur, even when no one meant to cause it.

Withdrawal as Harm Reduction

Timely withdrawal can be understood as a form of harm reduction. It is a way of responding early to rising strain, before damage becomes difficult or impossible to undo. When a situation is becoming unstable, stepping back can limit how much harm occurs and how far it spreads. In moments where no option is entirely without cost, withdrawal can be the choice that reduces risk rather than escalating it.

The harm at stake is not abstract. When dysregulation escalates unchecked, people can lose jobs, relationships, reputations, and access to community. They can lose standing in workplaces or educational settings, be pushed out of housing or social networks, or find themselves excluded from spaces they once belonged to. In some contexts, the consequences can extend even further, including loss of freedom or serious threats to physical safety. These outcomes are not the result of poor character or bad intentions; they are the result of being pushed past capacity without a way to pause or exit.

Dysregulated responses such as meltdowns and shutdowns are not matters of choice or intent. They occur when regulatory capacity has been exceeded, not when someone “decides” to lose control. Acting to prevent that threshold from being crossed is not manipulation or coercion. It is a preventive step taken to preserve stability and safety in situations where the costs of escalation can be severe.

Care does not always look like continued engagement. Sometimes the most responsible action available is to step back before irreversible harm occurs. Care sometimes looks like distance.

Timely Withdrawal Preserves Relationship

When withdrawal is timely, it isn’t taken before it’s needed. But when withdrawal happens early enough, it can prevent harm that is hard (or impossible) to undo later. Taking space before capacity collapses lowers the chance of saying or doing things that permanently damage trust or safety. In that sense, withdrawal is not a rupture itself. It can be one of the ways a relationship is protected from true rupture.

Stepping back from a stressful experience is not the same as stepping away from a relationship, job, or course of education. Pausing to restore capacity does not mean care, commitment, or responsibility have disappeared. Treating temporary distance as abandonment collapses two very different things into one and misses what the pause is actually for.

Many ruptures that get blamed on withdrawal do not happen because someone left. They happen because someone could not leave. When leaving is denied, discouraged, or treated as morally wrong, pressure builds with nowhere to go. In those situations, damage often occurs not because distance was taken, but because it wasn’t allowed.

Supportive Agreements (Before Conflict)

Talking about withdrawal ahead of time often makes the difference between it being taken as harm or as care. When people have shared understanding about pauses and exits, taking space doesn’t come as a shock. Without that understanding, withdrawal gets interpreted in the most stressful moment, when assumptions tend to rush in and fill the gap.

A helpful understanding can be as simple as knowing that stepping away is allowed when capacity is strained. Discussing withdrawal before it happens (or during a calm time afterward) means having language that helps people tell the difference between taking necessary recovery space and abandoning a relationship. Understanding doesn’t dictate how long a pause should last or how things must be resolved when the pause has ended. It just makes it possible for distance to be seen as regulation, not rejection.

The timing of these conversations matters. They need to happen outside of active conflict, not in the middle of things unraveling. When expectations are named ahead of time, pauses don’t have to be defended or negotiated under pressure. That matters, especially when an Autistic person may not have the words or calm required to explain or even excuse themselves. The withdrawal can be taken as needed, and (hopefully) understood in its true spirit, not erroneously interpreted and judged.

A Principle, Not a Preference

For many Autistic people, the ability to withdraw is not a matter of comfort or personal style. It is a necessary condition for maintaining regulation, safety, and the ability to participate at all. Treating withdrawal as optional misunderstands its role and places demands on capacity that cannot be reliably met.

What is at stake is not convenience, but the basic conditions that make interaction possible. Safety depends on the ability to prevent overwhelm. Dignity depends on having one’s limits recognized. Autonomy is only preserved when one’s needs are honored. Continuity depends on reducing harm that cannot easily be repaired. When withdrawal is respected, these conditions are far more likely to hold.

Timely withdrawal is not a failure to care.

It is often the action that makes care possible at all.

A Bridge Between Silos

October 5, 2025 / unstrangemind

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

Book Review: The Neurodivergence Skills Workbook for Autism and ADHD by Jennifer Kemp and Monique Mitchelson

August 14, 2025 / unstrangemind

Book cover of The Neurodivergence Skills Workbook for Autism and ADHD by Jennifer Kemp, MPsych, and Monique Michelson, MPsych, with a foreword by Sonny Jane Wise. The subtitle reads: “Cultivate Self-Compassion, Live Authentically, and Be Your Own Advocate.” The design features colorful botanical illustrations in red, orange, green, blue, and purple against a white background, with a soft and inviting feel.

A Book About Us, For Us, By Us

When I pick up a book about autism and ADHD, my first questions are: Who wrote this? Do they get it from the inside, or are they peering in from the outside? That matters—because lived experience changes everything about how you frame a struggle, a strength, or a survival skill.

The Neurodivergence Skills Workbook for Autism and ADHD passes that test instantly. Both authors, Jennifer Kemp and Monique Mitchelson, are neurodivergent themselves. And not in the vague “oh, I relate to some traits” way, but openly and specifically: they are Autistic, ADHD, and committed to working from a strengths-based, non-pathologizing lens. That shows in every page.

A Foreword That Sets the Tone

And then there’s the foreword by Sonny Jane Wise, whom I adore. Sonny—trans, multiply neurodivergent, Autistic, ADHD—writes with the kind of clarity and conviction that makes me nod along the whole way.

Sonny showed up as an advocate on the same wavelength as work I and others had already been doing, voicing truths we’ve long expressed, but in their own, eloquent, powerful voice I admire tremendously. Sonny’s uncompromising advocacy and apparently boundless energy are such a delight.

Having their words open this book was a joy. It’s like entering a room and the first voice you hear is already speaking your language. Sonny Jane Wise is an advocate I trust completely. By the time you reach the first chapter, you already feel held by people who get it.

Not Just Another Workbook

While there are a growing number of excellent workbooks being published, the market has been flooded with “workbooks” for neurodivergent people for a while. Far too many of these are warmed-over CBT checklists or generic productivity hacks written by people outside the community who slapped a rainbow cover on something to exploit a market niche. This book is SO very much NOT that.

Kemp and Mitchelson’s workbook isn’t a thoughtless re-brand or instructions for making you into a more tolerable version of yourself for neurotypical comfort. It’s about helping you know yourself more deeply, regulate without shaming yourself for struggling, and build skills that actually work for a nervous system like yours.

Why It Works for Emotional Regulation Struggles

As someone who lives in the messy, stormy, exhausting reality of emotional regulation challenges, I read this with a mix of curiosity and cautious optimism. What I found was a thoughtful, step-by-step approach that blends evidence-based strategies with lived-experience wisdom.

They talk about emotions not as “problems to fix” but as signals to understand. They normalize overwhelm. They teach skills in layers—starting where you are, without pressure to perform. And they do it without the infantilizing tone that so often creeps into resources aimed at autistic or ADHD adults.

A Few Highlights

Here are some of the aspects of this book that especially shine:

Interoception & Self-Check-Ins: Practical, compassionate exercises for learning to notice what’s going on inside your body before you tip into crisis.

Sensory Strategies That Aren’t One-Size-Fits-All: Acknowledging that what soothes one neurodivergent brain can overload another.

Scripts for Self-Advocacy: Not in the “just say this and everything will be fine” sense, but as adaptable frameworks to make self-expression easier under stress.

Why I’m Recommending It

I don’t recommend every book I read. Too many get the tone wrong, or the science shaky, or the audience wrong entirely. This one nails it—particularly for Autistic and ADHD people who wrestle with emotional regulation in a world that often treats our distress as a moral failing.

The fact that it’s written by therapists who are openly neurodivergent, with a foreword by Sonny Jane Wise, gives it a credibility and warmth that I want my readers to experience. It’s not just a workbook—it’s a conversation with people who know the terrain, who have walked it themselves, and who are willing to hand you the map they’ve drawn.

Final Takeaway

If you’ve been burned by self-help that left you feeling like the problem, this book will feel different. It treats your neurodivergence as a given, not a flaw. It offers skills without the side order of shame. And it does it all with the voice of people who speak our language.

This one’s going on my recommendation list, because it’s honest, useful, and written for us.

A is for Autism Acceptance

April 5, 2017 / unstrangemind

This post originally appeared on April 1, 2015. The book that resulted from this Autism Acceptance Month project, The ABCs of Autism Acceptance, is available from Autonomous Press.

Autism Acceptance is seeing us as whole, complete human beings worthy of respect. Autism acceptance is recognizing that we are different and helping us learn to work within our individual patterns of strengths and weaknesses.

[image description: A quote card, white with olive green highlights. It says “Autism acceptance is seeing us as whole, complete human beings worthy of respect. Autism acceptance is recognizing that we are different and helping us learn to work within our individual patterns of strengths and weaknesses…” – Sparrow R. Jones. Beneath the quote is the word ACCEPTANCE in all capital letters, an ornate font, and olive green. The bottom left corner of the image says FB/UnBoxedBrain, indicating the facebook page of the creator of the quote card.]

A is for Acceptance

You may have noticed in the last half-decade or so that there is a growing trend toward speaking of autism acceptance instead of autism awareness. By now, most of you probably know why people are making that choice, but just yesterday I saw a lot of people arguing about the topic, so I think we still need to make it clear.

Autism awareness, in and of itself, is not inherently bad. By now, most people are aware that there is a thing called autism but, in my experience, most people are not very aware of what that autism thing actually is. So I do, at least partially, agree with the people who say we still need more awareness.

What I have a problem with is the form that awareness tends to take.

A week ago, I had to stop listening to the radio because all the stations were already gearing up for April with lots of “awareness” and lots of advertisements about awareness events. I heard a lot about children with autism and nothing at all about Autistic adults. Not only do we “age out” of most services when we turn 18, but we also become invisible. It’s as if the entire world stops caring about us once we are no longer cute children to worry about and, instead, inconvenient adults to be stuck with.

I heard a lot of scare talk, including hearing us repeatedly compared to diabetes, cancer and AIDS. Diabetes, cancer and AIDS kill children. Autism does not. Diabetes, cancer and AIDS are illnesses laid on top of a child’s underlying identity – they can change a child’s philosophy but they do not change innate aspects of their identity. Autism is a cognitive and perceptual difference that is so deeply rooted in our neurology that it cannot be separated from our identity. Beneath cancer, there is a healthy child hoping to break free. Beneath autism, there is more autism – it’s autism all the way to the core. Autistic children do not “go into remission,” they develop coping skills and they mature into Autistic adults, and they work to learn ways to communicate with those around them. There might be suffering that can be alleviated – seizures brought under control, gastrointestinal disorders treated, methods learned and sometimes medications taken for mitigating anxiety. Autistic adults often do not resemble the Autistic children they once were – we grow and develop all our lives – but Autistic adults are still every bit as Autistic as they were when they were children, no matter how many coping skills are learned, no matter how “indistinguishable from their peers” they become.

At the center of the autism awareness movement is an organization known as Autism Speaks that functions like a giant magnet, drawing all donations to them. In the ten years that Autism Speaks has been around, local organizations have watched their funding dry up. Autism Speaks dominates the autism charity scene now and, as a result, they have the power to set the tone when it comes to “awareness.” And that tone is one of despair and misery. We are portrayed as burdens who break up marriages and destroy the lives of those around us. We have been compared to “lepers” (an outdated term for people with Hansen’s disease) and our parents to saints for taking care of us. The awareness that is being put forth is shaped around a rhetoric of fear. Autism Speaks is one of the few organizations that is widely hated by the population it was established to serve. Only one Autistic person was ever accepted in a leadership role and he resigned, saying, “No one says the Cancer Society does not speak for them. No one describes the Cystic Fibrosis Foundation as an evil organization. All that and more is said of Autism Speaks every day. I’ve tried to be a voice of moderation but it hasn’t worked. Too many of the views expressed by the organization are not my own; indeed I hold very different points of view.”

So that is autism awareness. That is what we are rejecting.

What is autism acceptance? Autism acceptance is seeing us as whole, complete human beings worthy of respect. Autism acceptance is recognizing that we are different and helping us learn to work within our individual patterns of strengths and weaknesses to become the best people we can be, not trying to transform us into someone we are not. Autism acceptance is remembering always that Autistic people are listening, including those who might appear not to be, and choosing to speak of autism and Autistic people in ways that presume competence and communicate value.

“Tolerance says, “Well, I have to put up with you.” Awareness says, “I know you have a problem and are working earnestly to fix it.” Acceptance says, “You are amazing because you are you, and not despite your differences, but because of them.”” – Kassiane Sibley

“Acceptance is about recognizing that an autistic person is, and will always be, different but not less – even as some challenges are addressed. ” – Amy Sequenzia

“Autistic people are not viewed as able beings, this view makes us suffer.” – Emma Zurcher-Long

“Autism Acceptance means supporting the Autistic person in learning the things they want to learn and in gaining the skills they need for what they want to do. Autism Acceptance is the radical assertion that at the level of broad, overarching principles, what Autistic people need isn’t that different. We need to be accepted for who we are. We need to hear that we’re OK, we need to hear that the things we have trouble with don’t make us broken or lazy or horrible people. We need people’s actions towards us to reflect that. We need people to listen when we say we need help, and we need people to listen when we say we don’t. We need to be taken as the whole people that we are, and we need to be met with the understanding that we are the experts in our own lives and abilities.” – Alyssa

“Good teaching is based in deep respect for the individual, the cognitive learning style of each student, the shared excitement about the topic of study. Best practice in teaching autistic students isn’t any different, though these faculty would be insulted if I told them so.” – Carolyn Ogburn

“Over the past two years, I have asked Tyler many times how he feels about having autism. And while he clearly understands how the autism negatively affects his social skills and attention, he always tells me that he likes his autism. Although he has also told me, at times, that he wants to be “normal,” he continues to insist that his autism helps him. So if he likes his autism, do I really have the right to counsel him otherwise?” – Kymberly Grosso

“If you have the autism acceptance song in your heart, add Paula and Estée’s voices to your blog rolls, Subscribe to their blogs. Tweet, ‘like’, and show your respect and support to these powerful women. Don’t allow their names to fade into internet oblivion as others try to opt into autism acceptance because it is now the fashion. They were doing it before it was cool. It is easier to say accept autism now because others paid the high cost for daring to say it before us.” – Kerima Çevik

“Acceptance means accepting yourself as you are, even in the face of persistent attempts throughout your life to get you to be what you are not. Especially in the face of persistent attempts throughout your life to get you to be what you are not. The best you can be is Autistic. Let me explain. “The best you can be is Autistic” means that you are at your best when you are being fully who you are, able to express yourself and move through the world in ways that are right for you, comfortable for your body. “The best you can be is Autistic” does not imply impairments, “less than,” “can only do so much.” On the contrary, it means that you are who you are- your pervasive Autistic self (which actually includes those parts that observers might think are “typical” just because they can’t see anything that looks unusual to them), and that encompasses all of who you are, not just the parts that have been “permitted,” and not just the stuff that whatever the DSM of the moment says are your deficits.

“You have the right, or should, to grow in ways that are good for you, that you think are good for you. You have the right to make changes in your life that you think are the correct ones for you.” – Paula C. Durbin-Westby, founder of Autism Acceptance Day/Month/Year/Decade

[image description: a full-color image of the book cover of The ABCs of Autism Acceptance by Sparrow Rose Jones. The cover features a semi-abstract drawing of the alphabet done in rainbow colors and a doodle style of drawing. Copyright 2016, Sparrow Rose Jones and Autonomous Press.]

Is Autism a Disability? Are Autistics Disabled? (Are These the Same Question?)

December 14, 2016 / unstrangemind

I don’t like to engage in serious conversations on Twitter because I’m so quickly overwhelmed by the format, but yesterday I ended up in a corner of a discussion that spread throughout much of the Twitter Autistic community, as evidenced by this other excellent blog post addressing a different aspect of the conversation: Autism does not reside in a medical report.

My corner of the conversation centered around the question of whether autism is a disability or not. The same person who stirred Sonia Boue to write the excellent post linked above got into it with one of my Twitter contacts on a different but related topic:

[image description: A twitter exchange. Grit Tokley writes: “I’m well aware of the social model of disability, and I don’t considering autism to be a disability in any sense, tyvm. @aspiemermaid” Autistic Elf (Aspiemermaid) responds: “@GritTokley ok. So why are you so hung up on getting it medically diagnosed?”]

So, here I am, unpacking the social model (and a couple of other models) of disability and discussing the questions: Is autism a disability? and Why does it matter whether it is or not?

Because, of course, the bulk of the following Twitter discussion centered around strong assertions that autism is not a disability, along with strong assertions that everyone is entitled to their own opinion and we must all agree to disagree

*sigh*

So, with that.

Three Models of Disability

There are many different models of disability, but I would like to focus in on three of them as being the most mainstream and/or the most useful for various groups of people.

The Medical Model of Disability

This is the most mainstream model of disability and the one you’re most likely to have seen before. One participant in the Twitter discussion shared this definition of disability that pretty well sums up the nicest version of the medical model you are ever likely to see:

[image description: a white background with black text reading: “Disability is an impairment that may be physical, cognitive, intellectual, mental, sensory, developmental, or some combination of these that results in restrictions on an individual’s ability to participate in what is considered “normal” in their everyday society.”

It’s sweet of them to put the word normal in quotes. Even with that nod, the medical model is basically saying that disability is entirely contained in the person identified as disabled. It’s all on you if you have impairments that restrict you. If you’re lucky, people will have a little decency and put some ramps in front of government buildings or braille placards on elevators, but mostly you just have to accept that you’re not normal and be grateful for what crumbs people toss your way. After all, you can’t expect everyone to go to the trouble and expense of making special accommodations just for you, right? Where would we be if we had to accommodate everyone’s impairments?

That’s the medical model and that’s why so many disabled people reject that definition of disability. But it’s still a really popular definition. And, as the person who shared the image pointed out, by this definition, autism is quite clearly a disability. Something like 99.9% of the Autistics you will meet have at least one of some kind of sensory issue that makes life difficult if/when they encounter sensory assaults (or situations in which they require extra sensory stimulation in order to stay regulated.) By definition, we are developmentally disabled, whether you use the medical model’s terminology (developmental delay) or recognize our development as being on a different trajectory from the mainstream. It’s pretty clear that, within the medical model we are disabled.

The Social Model of Disability

This is the model I see most often in the Autistic activist community. The social model was developed in the 1970s by British disability theorists who did not appreciate the way the medical model dumps all responsibility for disability and accommodations thereof in the laps of disabled people. The social model was a great improvement over the medical model, particularly in the area of human rights.

The social model posits that disability does not actually exist. Those states of being that are labeled as “disability” are natural variations in the human condition and all human beings require support and accommodation from society in order to survive. For example: you probably eat food that someone else grew, someone else processed and/or packaged, someone else drove to your region in a truck using fuel gathered and processed by someone else, driving on roads built by others and paid for collectively through taxation. All of the steps and people required to get food to the supermarket, farmer’s market, soup kitchen, restaurant, institutional kitchen or whatever location it is where you go to feed yourself are supports and accommodations that society approves of and works hard to keep in place.

When the need is a mainstream one, the supports and accommodations are called “infrastructure.” When the need is a divergent one, the supports and accommodations are called accessibility measures. According to the social model, “disability” is a social construct and “disabled” is what society is doing to you if it decides that the supports and accommodations you require are too much trouble and you are not worth the expenditure of time, energy, money, and other resources that would be required to make society accessible to someone like you.

Within the social model of disability, Autistics are disabled (by a society that does not value Autistics sufficiently to support and accommodate us) but autism is not a disability because disability does not exist, being merely a social construct that makes it convenient for those who would like to disable us without feeling guilty about it.

The Social-Relational Model of Disability

Finally, we have my favorite model of disability, the social-relational model. The social-relational model is less well-known, having only been developed in the 21st century, by disability theorist Solveig Reindal¹. The need for the social-relational model was clear before Reindal wrote about it, though, and I’ve also noticed some people who are unaware of Reindal’s work trying to re-shape the social model into something closer to Reindal’s vision, due to dissatisfaction with the social model. No need to re-shape the social model, though, when the social-relational model already exists.

The major dissatisfaction activists and theorists were finding with the social model was that disabled people could not express any dissatisfaction with the experience of being disabled without being viewed as “traitors to the theory.”². Reindal’s new formulation of the social-relational model moves to a third position in which society is still held accountable for disabling people but theory does not ignore the body or the real struggles some people have with disability, independent of society’s support and accommodations or lack thereof.

While the social model claimed that disability does not exist, being purely a social construct evolving out of views of those constructed as disabled as being “lesser” in some way, Reindal acknowledged that those who are identified as disabled do, indeed, have some type of impairment. These impairments – what the medical model calls “disability” – Reindal labeled as “barriers to doing.” In contrast to impairment, Reindal writes about “being disabled” as it is defined by the social model as the “barrier to being,” suggesting that the social constructs that view those with impairments as lesser beings, not worthy of inclusion or accommodation, creates an existential crisis that extends deeply into the disabled person’s core being.

Within the social-relational model, I have impairments (although not all Autistics have social-relational impairments, according to what others have told me) and I am disabled by society’s lack of support and accommodation for my needs. I have a disability and I am disabled. I have barriers to doing, which I find frustrating, and I have barriers to being, which I find devastating.

Why Is All This Important?

If you have read this far, you may be asking yourself why any of this matters. As an old friend used to say, “how will this help me shop for groceries?”

This is important because these are not just words and theories. This is important because these different frameworks for viewing people’s lives are the structures that underlie how we are treated, what assistance we get or do not get, even whether people feel we have sufficient humanity and “quality of life” to deserve to continue living. It is very important to understand these seemingly academic topics, because these sorts of thoughts are beneath the doctors’ attempts to deny Mel Baggs a feeding tube to keep Mel alive. These thoughts are behind the choice of those administering the transplant registries to deny Paul Corby a spot on the heart transplant list.

These questions and ideas and words are not just exercises in navel-gazing. They are the basis upon which life-or-death decisions are made about us. Too often these decisions are made without us, because the operating definition of disability/disabled is one that places us in an infantilized position where we are not considered able even to advocate for ourselves.

When I turned to my Facebook friends and asked how they felt about the question of whether autism is a disability or not, I got an overwhelming flood of responses — there were over 200 responses to the question. That discussion really helped me in shaping my thoughts about the rather distressing day I had on Twitter and the nature of disability/being disabled.

Two comments in particular resonated very strongly with me. I found them both thought-provoking and comforting after all the Twitter distress.

Cas Faulds said: “our current society and our current systems means that we are disabled and if we’re working under the impression that we aren’t, we’re setting ourselves up for failure.”

That’s very important. Denying that we are disabled (which I see a lot of Autistics doing these days) runs the risk of setting ourselves up for failure when we decide that there is no real difference between Autistic and non-autistic. This opens the door for the struggle I’ve faced most of my life, believing I kept failing because I just wasn’t trying hard enough. Understanding that I am disabled has helped me to forgive myself for those very real things I just can’t do — whether due to inherent impairment or being disabled by society.

No matter how “disabled” is philosophically constructed, I am definitely disabled and acknowledging that fact gives me the space to re-frame situations and figure out accommodations, whether self-accommodations or accommodations I request from others.

My friend, Chris, said: “there’s an immense spectrum, from not disabling to severely disabling, and someone pretending their end is the only one that should be called “autism” — well that’s pinging ME really hard as supremacism.”

Yes! The people who kept telling me that autism is not a disability and Autistics are not disabled said that I would hurt the image of autism by insisting that it is a disability or that Autistics are disabled. I felt very excluded and erased because I am quite disabled.

When the discussion was framed in terms of division and supremacism, the first thing I thought of was Michael John Carley’s distress about dropping Asperger’s from the DSM because he didn’t want to be mistaken for someone with more challenges.

The people on Twitter might be right. It might just be a matter of opinion. It might be that autism is not a disability (“but you can call yourself disabled if you want to.”) It might be that we should just all “agree to disagree.”

But I think we should tread carefully on declaring that autism is not a disability when there are so many of us who are so very clearly disabled., regardless of which model of disability one chooses. I know that I would rather be mistaken for “somebody who might have to wear adult diapers and maybe a head-restraining device” (to quote Carley) than throw my Autistic siblings under a philosophical bus because my support needs are different from theirs.

So….my stance? Autism is a disability. Autistics are disabled. Society needs to work harder to support and accommodate us all, in all our variety, with all our different types and levels of support needs. We are human beings, expressing part of the infinite diversity humans express in infinite combinations. Accept us. Support us. Value us. The fact that we are disabled only means that society needs to think more carefully and work more diligently to craft an accessible world we all can live in, together.

1. Reindal, Solveig Magnus. 2008. “A Social Relational Model of Disability: A Theoretical Framework for Special Needs Education?” European Journal of Special Needs Education 23 (2): 135-46.

2. Shakespeare, Tom, and Nicholas Watson. 2002. “The Social Model of Disability: An Outdated Ideology?” Research in Social Science and Disability 2: 9-28.
and
Thomas, Pam, Lorraine Gradwell, and Natalie Markham. 1997. “Defining Impairment within the Social Model of Disability.” Coalition Magazine July.

Autism Speaks Hasn’t Really Changed Anything

October 15, 2016 / unstrangemind

You can’t have missed it. It’s everywhere you look: the announcement that Autism Speaks has dropped the word “cure” from its mission statement. It’s being lauded as a great sea change in the organization’s approach to autism and a sign that Autism Speaks is finally starting to listen to the activists who have rejected the cure mentality for so long and called on Autism Speaks to reject it, too.

Except it’s not a sea change. It’s not a change at all. Autism Speaks hasn’t changed a damned thing except their wording.

Look at their mission statement. The cure mindset is still front and center:

Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.

Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow.

from: https://www.autismspeaks.org/about-us/mission

Allow me to unpack this shining new mission statement.

Autism Speaks is now promoting solutions instead of cures. Except that one of their definitions of solutions is not only synonymous with what “cure” actually meant, it is even more chilling with the new wording. But I’m getting ahead of myself; you’ll see what I mean further on in this essay.

“Cure” was code language — something called a “dog whistle” because it’s language meant to only be truly understood by certain people just as dog whistles can only be heard by certain ears.

To the general population, “cure” sounds great. When you hear the word cure, you naturally think of an alleviation of suffering. You think of a cure for cancer. You think of the cure for the common cold. You think about kind-hearted, humanitarian scientists coming up with ways to soothe the discomfort and fend off death. Who could possibly be against a cure, right? Cures are good and make people happier and healthier.

But what does a cure for autism look like?

Autism is a difference in the structure and function of the brain. All the behavioral differences you see, all the perception differences we experience are informed by differences in neurological structure and function. The brain is the seat of our individual human identities. Autism is the ownership of an autistic brain. Curing autism would mean changing our brains.

Maybe it could be done carefully and someone could cure the pain and nausea I experience when I hear certain sounds without removing the musical parts of my brain. Maybe I could be cured so that I could listen to a soprano singing without my whole body trembling in pain but would I still have been able to learn to read sheet music at age four and play Chopin sonatas on the piano and compose and record my own music? Maybe.

Maybe I could be carefully and precisely cured so that I don’t regularly lose the ability to speak. It would be nice to not have to type to communicate sometimes. People aren’t very patient when I can only communicate by typing. They talk over me, they ignore what I tell them, they ask me five more questions while I’m still typing the answer to their first question, overloading and overwhelming me. Maybe I could be cured so that I never lose speech again without removing the parts of my brain that make me a skilled writer. I am as skilled with the written word as I am because it is my first language and the spoken word is my second language. Maybe I could be cured so that I could speak all the time, reliably, without losing my writing skills. Who would I be if I weren’t a writer? It is such a deep part of my personal identity, crafting written words. Anyone who has met me, heard me present, watched my YouTube videos knows that I speak well but I write so much better than I speak. Maybe my intermittent mutism could be cured without destroying my writing. Maybe.

You can see where I am leading you, right? There really isn’t a cure for autism. Once my brain was wired this way, my life trajectory was always going to be divergent from the bulk of life trajectories around me. Once my brain was wired in an autistic configuration, a cure would mean untangling my neurons and pasting them back together differently. Curing my autism would quite literally mean giving me a different brain. Giving me a different brain would quite literally mean erasing who I am. A “cure” for a living Autistic person is impossible because once you make such major changes to a person’s brain, you haven’t cured them; you’ve removed them and replaced them with a different person who might (or might not) share their memories. If you enjoy reading science fiction, read Elizabeth Moon’s novel, The Speed of Dark, for an eerily realistic example of what a cure for autism might look like.

So now I’m hearing some people praising Autism Speaks for removing the word “cure” from their mission statement, but has anything really changed? Let’s look at their new word, “solution,” adn see why it’s much more frightening to me than “cure.”

“Autism Speaks is dedicated to promoting solutions” …. let’s enumerate those solution goals:

1. across the spectrum

2. throughout the lifespan

3. for the needs of individuals with autism

4. for their families

5. through advocacy and support

6. increasing understanding and acceptance of autism spectrum disorder

7. advancing research into causes for autism spectrum disorder and related conditions

8. advancing research into better interventions for autism spectrum disorder and related conditions

And, for comparison, here is the old mission statement:

“We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families and society: and we work to bring hope to all who deal with the hardships of this disorder.”

1. Across the Spectrum

If these words mean what are claimed, this would be a sea change worthy of advertising. I am suspicious of all the focus on the removal of the word “cure” when “across the spectrum” is a much bigger change. Why is no one talking about this?

For years, those of us Autistics who could communicate using words, whether spoken or typed, were told to sit down and shut up. Autism Speaks wasn’t talking about us, we were told. They were only talking about those ‘poor unfortunates’ who could not speak for themselves. Sure, we got counted whenever Autism Speaks wanted to share the huge numbers of millions of Autistics they needed funding to help. They wanted us to be counted as warm bodies for fund-raising purposes. They just wanted us to be silent warm bodies. Shut up, Autistics, you’re getting in the way of us helping.

If Autism Speaks is truly committed to offering solutions “across the spectrum,” they need to look at how many of us are homeless and hungry. They need to look at how many of us are slipping through the services cracks because there’s nothing out there for us. They need to look at holding universities accountable for the accommodations Autistic students need to succeed and thrive in an academic setting. There are massive unmet needs among the Autistics that Autism Speaks has traditionally told to shut up. If we really are part of their mission statement now, are they going to make good on that? Or are those just words designed to shut us up yet again. “There, we mentioned you in our mission statement. Now sit down and shut up.”

Put your money where your mouth is, Autism Speaks. And by that, I don’t mean the $1,167,786 spent on catering.¹

Autism Speaks likes to make you think they are giving a lot of direct financial support to Autistic people and their families by rolling several categories together in their pie charts. They told us they spent $24 million on “family services, awareness, and advocacy”² because that hides the specifics.

It hides the actual amount that went to family services: $4.6 million

Versus the amount that went to advertising: $52 million

It hides how much of that advertising, “awareness and advocacy” was spent on promoting programs like MSSNG that teach the world that Autistics are “missing pieces.” Notice what they chose to leave out of the word “missing”: We Autistics are missing “I” – identity, humanity, self.

And what are the missing pieces that the MSSNG is discovering? Autism Speaks is sequencing thousands of genomes. “The best research minds in the world are going to mine this database of DNA so we can uncover and understand the various subtypes of autism. Then we can get to work developing customized treatments and therapies so we can improve the quality of life for so many people who need help.” – Liz Feld, President, Autism Speaks.³

Customized treatments and therapies? This would be great news for everyone, Autistic or not, if that’s what they’re actually doing. One-third of Autistics have epilepsy, so people with epilepsy would rejoice because those customized treatments would help them, too. As many as three-quarters of Autistics have clinically significant sleep disorders and that means the 25% of the general population with sleep disorders would rejoice because those customized treatments would help them, too. If MSSNG is really doing what it claims to be doing, the entire world should rejoice because the things we Autistics suffer with are not autism-exclusive things. Every treatment or therapy customized to our genetics will help thousands of non-autistic people who suffer those same things.

Except I’m not convinced. What are you developing, Autism Speaks? Will I be able to go get a genetic test and get targeted treatment for the digestive distress, neurological circadian rhythm sleep disorder, dyspraxia, anxiety disorder, and connective tissue disorder that are my genetic hitchhikers, the traveling companions of my autistic genetics? That would be a dream come true — not just for me, but for the millions of other people of all neurological profiles who also suffer these conditions and may share the particular genetics related to them.

I think MSSNG is more likely to be part of that “cure mentality” Autism Speaks claims it has jettisoned by changing the wording of its mission statement. I think MSSNG is a way to detect autism in the womb. I think MSSNG is a way to provide a “solution” to autism….. I think MSSNG is a way to make most future Autistic children be as missing as the estimated 80% of Down Syndrome children who are not born, thanks to genetic testing.

Prove me wrong. Fix my digestion and connective tissue and my sleep patterns that are too messed up for me to be employable. Please, do prove me wrong.

I am part of that “spectrum” you now speak of reaching across. Show me the solutions.

2. Throughout the Lifespan

This is another “I’ll believe it when I see it.” The entire world still thinks of children when they think of autism. They think it so much that we don’t ever really grow up, we become “adult children.” If Autism Speaks has a new commitment to “solutions” throughout the lifespan, let’s start seeing the word “adult” appearing more often. Alone, as a noun. Not as an adjective to modify the noun “child.” We grow up and we need help.

What are you going to do about the 10%+ of Autistic adults who end up in the penal system? what are you going to do about the 10%+ of Autistic adults who end up homeless? What are you going to do about Autistic adults who are deemed “too high functioning” to get services but “too low functioning” to be helped by Vocational Rehabilitation? What are you going to do about the Autistic adults languishing in sheltered workshops because no one cared enough to introduce supports to help them into the mainstream workforce with real wages? What are you going to do about the Autistic adults stashed away in institutions who could be living independently in the community with adequate supports?

You, Autism Speaks, are vacuuming up all the money from all the local communities, to the tune of $122 million per year and you are giving back only $4 million of that in actual services. You can change the wording of your mission statement all you want, but until you start helping the thousands of Autistic adults who are homeless, hungry, or imprisoned because there was nowhere for them to go and no services for them (because there was no money to help them, since it all ended up going to Autism Speaks) then your new mission statement is nothing but words designed to provide a louder and more elegant “sit down and shut up” to the inconvenient Autistic people who actually need the help you love to pretend you are giving them.

3. For the Needs of Individuals With Autism

Oh, yes. About our needs.

We need schools to accommodate us, from pre-school to university level. We need the supports and accommodation to attend school within the community, not segregated. We need programs that understand that our academic needs and our social needs can be on radically different levels and that both those needs must be addressed or you have failed us and, by extension, all of society.

We need to be spoken of in respectful terms, not called a tsunami or a public health crisis. Not to have our beautiful brains compared to cancer, AIDs, and diabetes. Not to be called a disease. Not to be used as inspiration porn, and for all those that just read the word porn and thought what the heck, inspiration porn is nothing like actual porn like Tanya Tate doing anal at sites like https://www.tubev.sex/?hl=ja, porn is now used as a word for lots of pictures of something i.e. food porn which is lots of pics of food. Not to be portrayed as the haunting menace that will destroy families, society, the economy, and all of civilization. Just as how people view an escort hamburg has as a negative thing (which has its own issues), this viewpoint must be changed as a whole. In the same way, masturbation should be normalized as a whole. Whether by using sex dolls or without. The taboos surrounding this whole topic should be dissolved because masturbation can be a means of self-pleasure for those suffering from depression. In addition, people need to stop being judgmental about other choices. For example, one should not be judged for going through a sex doll review so they can get a better idea before purchasing one.

Also, we need real access to healthcare, not to have our co-occurring conditions dismissed as “that’s just what autism is like” and not to be subjected to quack treatments like bleach enemas, worms, chelation. We need medical professionals who will take the time to understand our healthcare access barriers and work with us to overcome them. We need to have it understood that having spoken communication does not automatically erase our support needs and we need to have it understood that not having spoken communication does not automatically erase our intelligence and autonomy.

We need safe places to live, access to people we love, adequate healthy food to eat. We need to not be isolated from the community. We need to not have our autonomy overrun. We need help with employment for those of us who can work and we need help with financial support for those of us who cannot. All of us need support for the activities of daily living, and we need to have our support needs recognized, understood, and respected even though they can look very different from one person to the next.

And all that’s just for starters. Can you address this baseline, Autism Speaks? It’s in your mission statement now. We’re waiting.

4. For Their Families

The number one thing our families need is to see us provided for. Our families need the peace of mind that comes from knowing we will be okay when they have passed on. Our families need to see us being educated appropriately. Our families need a level of social understanding of autism that lets them not get harassed by neighbors for living with us in their homes, that lets them go shopping or to a restaurant with us without being judged as bad parents, that lets them hire a sitter to watch us for a reasonable price.

Presenting us as terrible burdens does not help our families. Calling us a public health crisis does not help our families. Encouraging traumatizing ‘therapies’ that create anxiety problems and PTSD in us does not help our families.

5. Through Advocacy and Support

Yes, what kind did you have in mind? We don’t need any more of that ‘advocacy and support’ like the “I Am Autism” video. We don’t need to be told we’re “MSSNG” (the two Is that are missing are the ones they are trying to pull the wool over.) We don’t need to be called a tsunami or called lepers or have it said that we are so pure and innocent because we don’t care about money. (I can show you an awful lot of Autistic adults who care an awful lot about money because they don’t have enough to pay the rent.)

How do you intend to advocate for us now? Is your support going to change? Are you going to spend more than the pitiful 3% of your income you currently spend on services for us and our families? Do the people who lovingly volunteer their time and resources to organize your fundraising walks realize that only three cents of every dollar they raise is actually going back to the community?

You’ve got to do much better in your advocacy and support than your track record, Autism Speaks, for anyone to take this new mission statement seriously. Where are your solutions that come through advocacy and support? What are you planning to solve?

6. Increasing Understanding and Acceptance of Autism Spectrum Disorder

This is where your alleged solutions start to sound like little more than buzzwords, Autism Speaks. You have latched on to the word “acceptance” without understanding what it means. I know you don’t understand what it means because you never would have listed this as one of your solutions if you really understood “acceptance.”

Yes, we have been calling for acceptance. We have been calling for acceptance of Autistics! You are calling for acceptance of Autism Spectrum Disorder? Seriously?

Accepting Autistics means accepting that we often look and sound and choose differently than other people but we are no less worthy of dignity and respect. Accepting Autistics means working with our patterns of strengths and struggles to help us find our way in this fast-moving and chaotic world. Accepting Autistics means making room for us at the table. We deserve to live independently in the community, with whatever supports we need to accomplish that. We deserve a chance to work, to go to school, to have a family, to shape a meaningful life — meaningful from our perspective and our needs and desires, not meaningful according to your judgment of how you think we should live.

You are calling for accepting autism spectrum disorder. What does that even mean? How does that help us? We are different and disabled but not disordered and we do not need you to accept a disorder; we need you to accept us. If you have real solutions, they will be about accepting us, not about accepting a disorder.

7. Advancing Research Into Causes for Autism Spectrum Disorder and Related Conditions

Here! Here! Here! This is it right here! This is why your new mission statement is far more terrifying than calling for a “cure.” This is why your emphasis on “solutions” is so chilling to me!

You want to study the causes of autism? You are dedicated to promoting solutions related to finding the causes of autism??? If you find out what causes autism, what solution are you planning to implement? Why do I keep hearing the word “final” every time I think about your solutions for the causes of autism? This is why I do not trust your shiny new mission statement. This is every bit as much entrenched in the cure mentality as your old mission statement. This is a piercing dog whistle for pre-natal testing and abortion.

This is why I read your new mission statement and I still see a huge organization draining all the money from local communities — money that could have helped us, our families, our schools, our vocational aspirations, our future — and using that money to research how to kill us before we are born.

This is why I say you have not changed a damned thing. You have slapped a fresh coat of paint on the same terrifying eugenics agenda you’ve always had, Autism Speaks.

You only took the word “cure” out of your mission statement. You did not remove the hatred of our existence. You might have fooled some people, but you aren’t fooling me.

8. Advancing Research Into Better Interventions for Autism Spectrum Disorder and Related Conditions

Meet the new torment; same as the old torment. Are these the better interventions that strip away our autonomy more efficiently, leaving us even more vulnerable to predators? Or is this more support for “treatment centers” that use electric shock on us? Or are these the better interventions that prevent us from being born in the first place?

No thank you, Autism Speaks. You have to do more than draft some buzzier buzzwords for me to trust you.

In fact, I think I agree with my friends who have said that the only thing you could possibly do at this point to win our trust is completely dismantle and donate all your money to other organizations that are Autistic-led and doing the real work to make our actual lives better.

Who cares what causes autism? What good can it do Autistics to learn why we exist? We are grossly under served — all of us, “across the spectrum and throughout the lifespan” are not getting what we need to thrive and you are taking the money and volunteer time that could help bridge that gap and throwing it at research designed to eradicate us.

No. You have not changed a damned thing. I still don’t trust you. I still don’t trust those who support you.

All the carefully worded mission statements in the world will not change that.

1. https://www.autismspeaks.org/sites/default/files/docs/final_autism_speaks_2014_28229.pdf
2. https://www.autismspeaks.org/sites/default/files/docs/annual_report_9-11.pdf

3. https://www.autismspeaks.org/science/science-news/autism-speaks-launches-mssng-groundbreaking-genome-sequencing-program

Life, Animated: A Review

August 20, 2016 / unstrangemind

[image description: a movie poster for Life Animated. The movie title is in red on a blue background. The top half of Owen Suskind’s head is at the bottom of the image and line drawings of figures from Disney animated movies surround him.]

Life, Animated: A Review

Last night I went with friends to the Portland Museum of Art in Portland, Maine, to see the indie documentary, Life, Animated.

Life, Animated is based on a book by Ron Suskind, a journalist and father to Owen Suskind, the Autistic young man who is the film’s subject and an absolute delight. Owen’s greatest love in life is Disney movies and these films have sustained him through many dark years of isolation and bullying (years Owen calls “glop”) as well as all the disappointments and tragedies a well-lived life can bring. And Owen’s life is well-lived, indeed. He is a charming man, a natural leader, and a deep thinker.

I write this review as an Autistic adult, myself, and I found much in this movie that made me rejoice. I confess that I was troubled by some of the language used, for example when Owen’s father talks about feeling as if someone had kidnapped his child, then later discovers Owen was “still in there” and sets himself about a “rescue mission” to “pull him out” of the “prison of autism.” I was torn at those points in the movie, between an empathy for Owen’s family, feeling themselves at a loss to communicate effectively with their child and a heavy feeling in my heart at hearing an Autistic person described that way.

But I came away from the movie realizing that Owen, himself, had similar feelings about his relationship to the world. While he never directly said, “being an Autistic child was like living in a prison,” he talks about feeling so overwhelmed by all the sounds around him that fought for his attention and made people’s voices “a garble.” And when Owen talks about his glop years, he is clearly distressed by how badly he was bullied and how lonely he felt.

Ron tells a story of connecting with Owen through a hand-puppet of Iago, the parrot from the Disney animated film Aladdin. When Ron spoke to Owen through Iago, Owen said that he was sad because he had no friends. I realized that, as much as I hate the phrase “prison of autism” and how it puts all the blame for communication barriers on the Autistic person and implies that we are the ones who must do all the work to enter someone else’s world, Owen’s experience of growing up Autistic must have felt very much like being imprisoned in glop.

I also came to terms with Ron’s use of language because he didn’t simply decide that Owen was “locked away” and had to come join “the real world,” but, together with his wife, Cornelia, and Owen’s older brother, Walter, he entered Owen’s world. When the family realized that Owen was using Disney movies to communicate, the whole family used Owen’s love of Disney as an entry portal to join him in his world. That was what made this movie so beautiful to me: that the family encouraged Owen’s deep love for Disney and found their way into his world. Suddenly autism isn’t as much of a “prison” when the whole family has opened that door with love and performed their “rescue” by entering and joining Owen.

I recommend this movie to anyone with a compassionate heart. Owen will charm you. His life progress will cheer you. The way Owen feels his pain deeply will move you. Owen’s ability to process his pain and move through it to the happiness beyond will impress you. Owen is a man with a powerful vision of justice, loyalty, and independence.

While his father produced it, this is Owen’s film in every aspect. Owen’s parents and brother worry about what will happen to Owen when his parents have aged and passed away, but Owen will be just fine and we, the viewers, see that when Owen pauses The Lion King to ask the Disney club he formed at his school, “what was Mustafa teaching Simba?” Members of the club offer insightful responses and Owen agrees, summing up their words by saying, “when our parents can no longer help us, we have to figure out things on our own.”

Owen is figuring things out. He is moving forward into the world, “a little bit nervous and a little bit excited,” and discovering that he can succeed as an adult without losing the magic and wonder of childhood. He has memorized every Disney film and he has internalized the valuable lessons they teach about friendship, courage, and honor.

His parents still get teary-eyed when they talk about the early days when Owen was first diagnosed with autism. But only moments later, they are clearly bursting with pride at what a lovely, strong man Owen has grown to be. Owen is, in his own words, “a proud Autistic man.” The viewer will leave the theater feeling proud of Owen, too. I found his journey through the darkness of glop and back into the light, with the help of the timeless Disney stories, inspirational for my own journey through the glop of anxiety and depression, loneliness and bullying, isolation and deprivation. Owen has saved his own life with stories and, in the process, become a storyteller in his own right.

Owen’s prison was not autism. He is still Autistic and he will always be Autistic. Owen’s prison was isolation from others. What saved Owen’s life was not being pulled out of autism, as if that were even possible. (It’s not. Autism is how his brain is wired and as deep a part of who he is as the Disney stories he loves so much.) What saved Owen was communication. When Owen’s family learned how to communicate with him, they opened a path of connection that grew stronger every day.

For me, the strongest messages Life, Animated brings to parents of Autistic children is to never give up on finding a way to communicate with your child and never give up on helping your child find a way to communicate with the world.

At one point, Owen communicated by repeating a line from The Little Mermaid over and over: “just your voice. Just your voice.” Owen’s pediatrician said it was merely echolalia, signifying nothing. Ron seemed to agree with the assessment on the surface, but beneath that agreement, he clearly harbored a secret hope that it did signify something. In my opinion, Ron was right. Echolalia is communication, as many parents of Autistic children who speak in quotes will quickly tell you. Many Autistic adults who were echolalic when younger (or still are as adults) but have developed a more independent voice will agree: when they were, or are, echolalic, communication is still happening on their part, even when it’s not getting picked up and understood by the recipient.

Ron did not so quickly dismiss the echolalia as meaningless. Moreover, at one point in the film, Ron extends the question of meaning, asking, “who decides what a meaningful life is?” Ron never directly answers that question, but he doesn’t have to. Owen has a meaningful life by anyone’s measure.

But the only measure that really matters in the end is Owen’s. Owen said he didn’t feel like a hero; he felt like a sidekick. But in re-making the Disney canon into a story that was truly his, he rose to become a hero among sidekicks and the protector of them all. Owen has crafted a meaningful life on his terms.

Life, Animated is a celebration of communication, of victory, and of an Autistic life well-lived. I hope you have a chance to see it soon yourself. The film offers much to think about and discuss as our culture struggles to understand what autism is and how Autistics can be welcomed and honored as full participants in society. We can be helped to find our own way in the world as narrators of our own life stories.

Tag: adult autistics

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The Protective Power of Timely Withdrawal

What “Timely Withdrawal” Means

The False Moral Binary

What Happens When Withdrawal Is Denied

Why Withdrawal Is So Often Misread

Withdrawal as Harm Reduction

Timely Withdrawal Preserves Relationship

Supportive Agreements (Before Conflict)

A Principle, Not a Preference

A Bridge Between Silos

The Child No One Wanted in Class

A Spectrum With No Middle

The Lived Middle

The Scientific Lens, the Polygenic Divides

An Ethical Gap: Diagnosis Without Disclosure

The Human Cost of Polarization

My Life as a Bridge

Reclaiming the Middle Ground

Works Cited

Book Review: The Neurodivergence Skills Workbook for Autism and ADHD by Jennifer Kemp and Monique Mitchelson

A Book About Us, For Us, By Us

A Foreword That Sets the Tone

Not Just Another Workbook

Why It Works for Emotional Regulation Struggles

A Few Highlights

Why I’m Recommending It

Final Takeaway

A is for Autism Acceptance

Is Autism a Disability? Are Autistics Disabled? (Are These the Same Question?)

Autism Speaks Hasn’t Really Changed Anything

Life, Animated: A Review

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Contact Unstrange Mind:

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