On July 27, in Cranston, Rhode Island, 62-year-old Anna Maria Angelosanto killed her 21-year-old daughter, “Aly,” who had severe autism, and then tried to kill herself. She survived. She is charged with first-degree domestic homicide. According to the affidavit, sole caretaking responsibilities and financial struggles became the catalyst for that horrifying outcome.

In the note police found, she called herself and her daughter a burden. Immediately, I braced for the strike mobs. This is an outcome I have been studying for months, ever since a similar event shattered our community far too close to home this past May. I have not been sharing my findings because, quite frankly, I didn’t know how to in any way that society would be ready to receive. The more I studied, the more urgency I felt to sound the alarm, but I could not move past how to convey the issues without crowds with pitchforks claiming I was excusing harming one’s child. For the record, I am not.

Over the past few weeks, women across the country have been watching the Lindsay Clancy proceedings and doing something they have never done for a mother who killed her children. They did not call her a monster. They are rallying around her. They listened to what happened to her—the doctors, the medications, the hospital she checked herself into, the hospital that turned her away, the calls to crisis lines—the help she asked for, in every place she knew to ask. While the trial is still ongoing, the verdict of public opinion is not how could she; it is she tried everything, and everything failed her and those precious children.

In the history of how we talk about mothers, that response marks a small moral revolution. Clancy was a labor and delivery nurse. She knew the vocabulary. She could describe her own deterioration in clinical terms, to clinicians, inside the system that employed her. She could advocate for herself at a level almost no one can match.

And the right door still did not open.

If a nurse fluent in the language of those guarding the door could not get through, why assume the mothers who say they cannot get their children through are lying?

Because we do say it.

Constantly.

And nobody believes us.

Subscribe now

The mother in Cranston carried a heavy load of duty and responsibility, by all accounts with devoted love, for 21 years—not just a few months—yet the country is struggling to make a similar connection to Clancy’s case. I think the difference in response is driven by the fact that postpartum challenges are something a stranger can imagine happening to her; 21 years of caring for an adult who cannot be left alone is not. The capacity for empathy exists. It is simply rationed, and handed out to the women we can picture being.

I don’t have a problem with the word burden, not only because it is a stable term used in academic literature for caregiver research, but most of all because I don’t mind using a dictionary. One of the most widely used assessments in the field even has it in its name, the Zarit Burden Interview. As a noun, burden is “something that is carried: a load, duty, responsibility.” The example the Merriam-Webster dictionary itself supplies is bore the burden of caring for their aging parents. The dictionary illustrates the noun with a caregiver.

As a verb, it means “oppress.” This mother did not claim that her daughter oppressed her. She was in a state of despair, feeling her only purpose was to carry a load she no longer felt capable of carrying alone. She did not want to impose that weight on anyone else, hence identifying herself as a burden.

The people who perpetuate this injustice keep society attacking parents instead of fixing the system. If she was an evil woman who blamed her vulnerable daughter for inconveniencing her life, then we can put a neat little bow on the concrete box we put her in, separate from anything any of us could relate to, and we can forget.

The research does not align with that easy answer, quite the opposite. The parents who reach this point usually have no history of domestic violence, no mental health challenges, no substance abuse, and their families and communities describe dedicated advocates and devoted, loving parents. Shock is the prevailing reaction.

No parent I have ever spoken to in going on three decades of this work has said their child burdened them. Not one. What they say, over and over, in different words, is that they are carrying the entire load of a failed system. Those are different sentences. The first one blames a person. The second describes a weight no human was meant to bear alone and leaves open the questions of who put it there, who leaves it there, and who will lift it.

The word comes to us from Old English byrthen, kin to beran, to carry. It is the same root as bear. What you bear. What you cannot bear. The word was never an insult.

Not every parent of a child with severe autism is quick to express empathy for Angelosanto. Some say plainly that they could never. One mother of two nonverbal children, one aggressive and self-injurious, wrote that she has survived hard days and will survive more. Another said her children trust her to keep them alive and she will not betray that trust. They are right. They aren’t excusing anything, and they aren’t pretending this lifestyle is some walk in the park.

I still sit squarely in the could-never-would-never camp. In all my research, though, I also check all the high risk boxes: single, high-acuity care, no staffing, states away from family, no physical support, all financial responsibility, no respite options whatsoever, managing complex medical and complex behavioral, and my daughter has aggression, self-injury, and property destruction when in active catatonia crises.

Some might look at that and say: See! You prove those factors don’t make someone do that. Do I? If I didn’t have extensive training through the Veterans Administration and multiple veteran nonprofits on caregiver coping strategies, on suicide prevention and intervention, on mood management; if I didn’t have thousands of hours of parent training from my daughter’s therapies over the years; if I didn’t know so many other parents I can call who understand exactly what my day is like without a word; if I wasn’t the third generation caring for someone with disabilities and working in the field of disabilities; if I hadn’t had my own encounter with not being able to form words, dress myself, or walk after brain surgery; if I didn’t have the unicorn of jobs that allowed me to work fully remotely and flexibly; if not…. Could that have been me?

If any one of those factors, or some combination of them, is why I get to enjoy my daughter’s laugh as she plays with her kitten while I am writing this today instead of us being another statistic, then could more be saved? I have not spent months buried in research deconstructing these events in any effort to excuse them. I see a predictable pattern, and what is predictable is preventable. I want to prevent as many of these tragic outcomes as possible.

People still have questions about Angelosanto. Why didn’t she place her daughter somewhere? Was she doing it alone? Wasn’t there help?

Those questions have answers, and the answers are in the research.

Last year, a team at Stanford and UC Santa Barbara surveyed 423 caregivers of adolescents and adults with profound autism across 47 states and interviewed 20 of them at length. They titled the paper with a sentence one mother gave them: There is no help. Doctors don’t want to help. Agencies don’t want to help. There is no help.

Asked what stood in the way of services, 62% named a shortage of providers and 54% named their own child’s behavior. Behavior ranked above cost, above insurance, above transportation. The thing that most reliably keeps a person with severe autism out of services is the thing that makes them need services.

One mother described being eligible for 600 hours of respite a year and receiving none of it, because of her twins’ aggression, their inability to toilet independently, the severity of their diagnoses, and what the state pays a respite worker. 600 hours approved on paper. Zero delivered. Another said that every time she found something, one more thing came back: Oh nope. Not your kid.

I related to both. My daughter has held a Medicaid waiver since 2018. She has not had a single hour staffed since she turned 21, 27 months ago. She goes nowhere without me, not by my choice, but by a 100% rejection rate. She was never kicked out of a program. No program will let her try.

During her most recent crisis in May and June, I had multiple circle of support meetings with the Managed Care Organization and the crisis program for the Department of Disability and Aging. I called hospitals in other states. I talked with other families. I am the executive director of a national nonprofit and I sit on the statewide council for developmental disabilities, and I could not find one place to take my daughter for one hour so I could pick up the glass she’d broken without her trying to roll in it, or aggressing at me, or biting herself when I stopped her from getting near it. That went on for 41 days—41 days of her barely sleeping, eating, drinking, voiding, before I could stabilize her through ECT. When I tried to hold a postmortem afterward, to build a plan so there might be some option next time, I was told there was nothing the MCO could do because she no longer needed hospitalization.

If that is the outcome for a woman with an extensive network and a platform the state is well aware will make it publicly known, what do you think the other parents hear?

A 10-year retrospective review of emergency department visits by individuals with autism or intellectual disability found that aggression towards others was the most common reason for presentation, while also finding that individuals with aggression and intellectual impairment faced greater barriers to accessing appropriate inpatient care, often being discharged home due to lack of specialty units. That gap then falls on families, who are left to search for alternative care options that come with their own access challenges. Compounding this, many of these patients lived in single-caregiver households with limited support systems, and research found that single caregivers of autistic children already struggle more to access social supports due to constraints on time and finances.

Was she alone. In the Stanford study, 82% of respondents were mothers. In an English study of 750 parent carers published in 2024, two-thirds had given up paid work and more than a third were not formally registered as a caregiver with anyone, invisible to the system. That same study found 42% had experienced suicidal thoughts or behaviors while caring. Among them, 53% had never told a single person.

Their ideation rate skyrockets above the general population’s, but their attempt rate runs far below it. They are not the monsters their children need protection from. They are the mothers saying I would never.

The danger is the moment something overrides the brake: a terminal diagnosis, a spouse who leaves, a denial letter, a fall, an adult child aging out to “the cliff,” the morning a woman in her sixties finds she can no longer lift her 40-year-old son off the floor.

For a brief moment, I felt that paralyzing fear. Unexpected neurocognitive deficits following my craniotomy left me unable to calculate even simple fourth grade math. I sobbed during speech therapy asking, “Who will care for my daughter?” I was not thinking about who would care for me. I was panicked knowing the skill required to manage my daughter’s medications, get her to appointments, and advocate for her all far exceeded my capabilities at that time. My speech therapist reassured me I would care for my daughter, and she was right. I did recover, but I will never forget how terrified I was thinking of what would happen to my daughter if I was unable to get my body and brain to heal.

That fear is not irrational. Two adult children in New Jersey died this year in separate incidents, falling from windows at their service programs. A mother in Kentucky has documented more than 130 unexplained injuries on her adult daughter and is in year four of trying to get a camera into the group home. In Ohio, a father is still pursuing justice after his daughter’s throat was slashed at her group home and nobody was arrested.

Last month, a mother contacted me distraught because her adult daughter’s group home had evicted her daughter to the hospital. The hospital demanded the mother take her daughter to her house, with none of the staffing or environmental design the group home had which had still felt unequipped to safely provide her daughter’s care. The mother refused, and the hospital filed criminal charges against the mother for neglect.

Last week, another mother called frantic. The state was attempting to have her conservatorship removed because she did not agree to the inhumane treatment of her adult child. I wish I was shocked when I receive these messages, but I have been hearing similar stories for years, each one as heartbreaking as the last. Deborah Findley of California has been fighting for several years against what she calls the “medical kidnapping” of her son, featured in the ABC mini-series The Price of Care: Taken by the State.

Caregivers in this subpopulation have unique barriers that extend beyond simply Why don’t they call someone? That leads to a feeling of entrapment, and entrapment is a serious risk factor in suicidal ideation. With an adult child wholly dependent upon them, unable to even report if someone harms them to get the harm to stop, with so many stories of abuse, harm, and neglect in modern care homes, Why not just take herself out? Why her child, too? also is not as simple as some might believe.

I am not excusing what happened in Cranston. Aly should be alive. Her death is not a lesser tragedy because her mother was in a suicidal crisis, and nothing about her life made her death defensible. She should still be here.

I am making a claim about cause. Time and again, two people are gone, or one is gone and one survives to be charged. Prevention has to aim at saving both of them, upstream, before the brake breaks.

Dr. Dawn Turnage presented at NCSA’s assembly in July on caregiver quality of life in profound autism. The room went silent as she described losing multiple caregiver friends to breast cancer. In each case the women had been unable to attend routine mammograms. They were at stage four by the time they knew, with very little time to answer the question every parent in that room was already carrying: what happens to my child when I am gone? The nation is reaching empathy easier for Clancy, in part, because of how many doctors she tried getting help from. Caregivers of those with severe autism are not operating within the same opportunities for self-care.

In Dr. Turnage’s 2022 review pooling 15 studies and 5,565 participants across 10 countries, buried in the recommendations, is a sentence that explains more about Cranston than the affidavit does. There are currently no clinical practice guidelines for screening the physical, mental, or social health of caregivers. None. Nowhere. A woman can spend 21 years providing round-the-clock care, and no protocol instructs any clinician, at any visit, to check whether she is still standing.

We are not studied, and we are not looked after. Then we are told we are claiming our children are burdening us when we make a cry for help to the system that never showed up. We are told to stop centering ourselves. We are called martyr moms, or gripars, grievance parents. We are shamed and shunned until we submit and shut up.

The real rub? I have never been a first call. Every parent who has reached me in a full-blown crisis had already contacted the go-to disability organizations, or their state’s patient advocacy service, or both, and every one had been turned away. Those crises don’t fit the narrative that we don’t treat people with disabilities that way anymore. So the organizations look away, and lead society to look away with them. Then when tragedy strikes, they lead the charge condemning the parent.

At what point will they start holding the failed system accountable?

I will not ask you to forgive or understand how a 62-year-old woman could spend 21 years tending to every need, every bath, every meal, every appointment of her daughter with severe autism, and then one day write a note, take her daughter’s life, and try to end her own. I simply ask that you don’t let your outrage end there.

If you want to do something today, ask your state Medicaid agency one question: of the people on your waiver rolls, other than care from a parent, how many received zero hours of service last year? They will likely not want to answer that. I encourage you to keep asking.

And ask Congress to study the caregivers of severe autism, because it has never been done. There is no research anywhere in the world following caregivers of people with severe autism across the decades. What happens to her body, her income, her other children, her marriage, her life? Nobody has those answers.

If society is going to rely on one person to act as the entire system of support for someone with high-acuity medical and behavioral needs, it benefits all of us to make sure the person carrying that load is as healthy as she can be. And if caregivers are providing care for decades that no hospital, agency, or clinic feels equipped to provide, shouldn’t we be asking them how? That knowledge could be transferred to formal supports, leading to appropriate care options in the future, ones that could replicate the care parent caregivers provide today.

If parents had real options on the horizon, they could stop wondering what happens when they are gone. As of NCSA’s 2025 survey, only 12% had an answer to that question.

That has to change. Study the caregivers.

The best way I can see to honor Aly’s life is to work to make hers the last that ends this way. For that, we need major system reform.

Share

Since 2019, my balance relies on my eyes, my hearing on one ear. A brain tumor took all function from the other, most of the movement in that side of my face, and any ability to locate a sound in space. When I misplace my phone, Apple’s Find My Phone can make it ring, but it would do me no good if I were alone. Instead, I ask my daughter to find the sound my brain cannot. She has profound autism. Some days she serves as my hearing, and others I serve as her voice. Neither of us is a superhero. Nobody has taken me aside to explain that single-sided deafness is a gift, yet I have been told for years that seeing her autism as anything but a gift is ableist.

Subscribe

Last night, I listened to Bryan Stevenson talk with Ezra Klein about Loving America Honestly. Klein read from a historical recruiting bill printed in Selma by the Citizens' Council, an organization founded to break the civil rights movement. The bill asked white citizens for four dollars to fund efforts to maintain segregation. The flyer didn’t ask donors to fund white supremacy; it promised racial harmony.

Klein’s next words landed with the familiarity of my oldest shoes, the ones that have tracked mud into many rooms which tried sanitizing disability.

“The status quo,” he said, “can look like harmony to everyone it is not currently harming.”

Since childhood I have belonged to the disability rights movement, and yet for most of my adult life I have fought parts of it, too. Standing in my kitchen with one ear full of Alabama, I understood my own quarrel. The order that harms my daughter has never called itself harm. It calls itself inclusion. It prints its promise on t-shirts.

Take the dis out of ability.

Read it as an equation instead of a hug. Ability sits on one side, whole and desirable. Disability sits on the other as a prefix, a contaminant, two syllables awaiting surgical removal. Dignity waits on the far side of the removal. Its cousins perform the same operation: differently abled, special abilities, superpower, handicapable. Each phrase declines to pronounce the name of the condition, then congratulates itself for the courtesy. A movement that cannot say the word it organizes around has conceded that the word is filthy, and it hands the filth to the people who cannot outrun it.

I can outrun it. My disabilities don’t stop me from anything that truly matters. My daughter cannot outrun hers. If the modern movement’s slogans are believed, she never receives the dignity they claim to promise.

With my deepest sincerity, I am not equating my daughter’s life with chattel slavery. Nothing in my history buys me a chair at that table, and Black disabled children carry both weights while the movement takes its time saying so. I borrow the shape of a story, not the weight of a wound.

Stevenson locates the deepest evil of American slavery somewhere other than the chains. He locates it in the narrative built to justify them, the story that Black people were less human. Men who tore screaming mothers from their children considered themselves moral and decent. The story permitted the act, then outlasted it by a century and a half.

Klein describes standing before a museum wall papered with advertisements for the sale of human beings. The people for sale carried descriptions such as trustworthy, quick to learn, of excellent family. The descriptions could pass for letters of recommendation. That same system compelled people to advertise themselves on the sales block, then whipped them for weeping when the sale tore apart their family.

The narrative was a lie. Racial hierarchy was not harmony. People’s abilities did not protect them from horrifying harm.

History is not a sentient being that repeats itself all on its own. Humans repackage it in kinder language and sincere belief. We regift the same mistakes across generations and populations until we learn to have the hard conversations that hold the whole story, discomfort and all.

My daughter was sixteen when a genetic test found one letter out of place, in one gene, on her sixth chromosome, and added a diagnosis: SYNGAP1-related disorder. The gene makes too little of a protein her synapses need. Soon after, I saw an image from Dr. Richard Huganir at Johns Hopkins that brought reality into an irrefutable light. A typical neuron sits on the left, spare and orderly. One like hers sits on the right, a briar, dendrites piled on dendrites.

No parent wishes an ultra-rare disease on a child. After sixteen years of being gaslit, though, I wept with relief. She was not defiant, unruly, or malicious. I was not parenting wrong. This was not a different ability. This was not going to be modified or accommodated away. This was reality, one that did not fit neatly into any of the modern movement’s narratives. Her brain cannot take the dis out of ability, the DNA says so, and the visual proof of it felt like mercy, not defeat.

Last month, Molecular Autism published a consensus study reaching a research definition of profound autism (Siegel et al., 2026). Ninety-seven percent of the panel agreed that a person who meets it needs an adult available around the clock. Ninety-five percent agreed on something quieter and worse: that such a person cannot consistently put a healthcare need into words for a caregiver or a doctor. She cannot reliably tell you where it hurts.

Nobody invented that finding to sell anybody. It survives euphemism. It survives the t-shirt. On Sarah Kernion’s Inchstones podcast, my colleague Cristina Gaudio named the thing the modern movement’s slogans cannot survive: “Dignity does not require defying reality.”

Consider, then, the advertisement I was told to write. To get a care worker through her approved waiver, my daughter needs a profile, and managed care set the format early. List her strengths. Describe a girl who loves music, who lights up around babies, who laughs at the chickens. Leave out the catatonia. Leave out the self-injury and the aggression, which arrive when she has no other way to say that something in her body has gone wrong. Sell her by her abilities alone.

I refused. Until she turned twenty-one, EPSDT protections kept her at least partially staffed. She is twenty-three now, and for two years she has gone unstaffed. The state’s waiver administrator has repeatedly named me as the problem, directly to me and in rooms where I was not present. My refusal is, in their word, uncooperative. I am disrupting the harmony, I suppose.

The enslavers wrote advertisements that told a truth their sermons denied. I was told to write one that omits a truth the movement’s slogans cannot hold. The lie endangers the worker who walks in untrained. It endangers my daughter more. It simply runs the other direction.

Two weeks ago, I posted a video of my daughter in the back of the car, demonstrating the challenge of accessing treatment for excited catatonia. Most of the comments were kind. Many were “us too.” A few were cruel, and a few were self-righteous. Strangers wrote to tell me that what I filmed was not catatonia. Keyboard warriors are apparently better informed in neuroscience than the multiple peer-reviewed publications that include my daughter as a catatonia subject. Others wrote that I should care more about her dignity than to share her worst moment. My grief settled on the movement rather than the hecklers, who are the inevitable product of decades spent selling a lie that pushed people like my daughter into the shadows.

They believed they had seen her worst moment. That assumption told me everything. Her worst moments happen in emergency departments where nobody will admit her, in the hours when she cannot say what hurts, in the years when no worker comes. What they watched was the tail end of a forty-one-day catatonia crisis, hours before it broke. By the next evening she was speaking in short phrases, with a smile in her voice.

Parents are told to hide the hard parts. Disabled people are told the hard parts are undignified. The following week I posted a second video, taken across June, showing the progress of treatment. When she is well, the behaviors are gone. I hide neither version of her. When she sings unintelligibly along to the Frozen soundtrack on the kitchen Alexa, I love her. When she bites her own hand or aggresses at me, I love her. She does not need to earn her worth. Hard days when her brain is a storm of overactivity that she has no ability to control do not diminish her dignity whatsoever.

Consider two men the disability rights movement chooses to regularly exalt. Ed Roberts enrolled at the University of California in 1962, after polio left him able to move almost nothing. No dormitory would house him, so he slept in an iron lung in the campus hospital, and from that room he organized the students who built the independent living movement. Paul Alexander spent more than seventy years inside a machine that breathed for him, finished law school, and wrote a book by gripping a stick in his teeth. When he died in 2024, millions of strangers grieved a man who had refused every ceiling anyone built above him.

Both men earned every monument they have. Notice what they share besides the polio and the iron lung. Each possessed a mind that could argue for its own worth. Each could tell a legislature what was being done to him and why it was wrong. The movement’s founding proof of concept is a body that fails and a mind that does not.

Stevenson refused to build his museum around Frederick Douglass, another part of the Klein interview that I immediately understood. Making the abolitionists into the heroes of abolition strikes him as incomplete, close to dishonest. The heroes, he argues, were the four million who held on to their humanity while everything worked to crush it. Enduring was the hard thing. In his view, writing polite essays in Boston not so much. Douglass’s work was noble and important, but it should illuminate, not overshadow, the hardships that still await our nation’s honest conversation.

The modern disability rights movement has built its museum around its own versions of Douglass. Then it went looking for more of him, and kept looking, until the collection grew large enough to hide everyone that challenged its prevailing narratives. When disabilities like profound autism revealed flaws in the movement’s values, it chose to double down on advertising a false narrative instead of course correcting. The consequences of that choice have fallen hardest on those with the greatest support needs.

The recent Molecular Autism paper also reports that the proportion of autism treatment studies enrolling severely affected participants has declined precipitously across two decades, and names the causes: stigma, perceived difficulty, cost, researcher unfamiliarity (Siegel et al., 2026). A movement that can mourn Paul Alexander while studies enrolling people like my daughter grow scarcer has told you what it values.

Leah Libresco Sargeant argues that we have made an idol of independence, that nobody has ever truly achieved it, and that vulnerability has never made anyone lesser. Her book reached me through Jonathan Machnee, an autistic writer who has found himself on the same disillusionment path with a movement he once championed with true belief.

Integration has come to mean assimilation, and assimilation asks one question: how closely can you resemble a person who needs nothing?

If my daughter produces nothing, she is still valuable. If she is never independent, she is still valuable. Those were never the measures of human worth, and a movement that adopted them built the hierarchy it swore to dismantle.

Cruelty explains none of this, which is the most uncomfortable thing Stevenson says. People with disabilities, and those who love them, wrote the sanitizing euphemisms. Good intentions are only the starting line. They cannot function as the alibi.

America closed places like Willowbrook and called the closings liberation. What replaced them, for families like mine, is a bedroom and an unpaid attendant related by blood to the person in need of 24/7 care. The average American caring for an aging parent does it for five years. Profound autism caregivers do it for five decades or more. We are the first generation to do it post-deinstitutionalization, and we reach retirement with no retirement, doing the arithmetic on which of us dies first. The public treasury set a load down. Parents picked it up. Congress has never counted what it weighs.

James Baldwin wrote that nothing can be changed until it is faced. Counting is how a country faces a thing. We are asking for a count.

Stevenson told Klein that “greatness is not possible without completeness.” I love my daughter with completeness. I love the girl in the kitchen mangling every word of a song she has heard nine thousand times, and I love the girl in the back of the car in full autonomic crisis, and I have never needed the second girl to vanish in order to adore the first. I cannot take the dis out of her ability, nor can she.

It is not the word disability that needs protecting. It is her.

I have not left the fight for disability rights, but for people like my daughter, the modern disability rights movement has. I still hold hope for a course correction that honors true inclusion. Aging caregivers, only 12% of whom have a sustainable plan for when they can no longer provide 24/7 care, don’t have time to wait for the movement to recalibrate, though. We are heading to D.C. next week to ensure Congress knows there is more to the story than what they’ve been sold.

From outside, it has always sounded like harmony. It has never had to stand in this kitchen.

Share

I know the people I mean to reach. We sit together in therapy waiting rooms and on the hard side of IEP tables, parents of children who need more than the world wants to give them. Many of you are conservative, churchgoing, college-educated, and devoted past the point of exhaustion. I have memorized those rooms with you: the blood pressure machine hum, the marker board on the wall, the particular way a mother completes an authorization form with one hand while steadying a child with the other. You vote a straight red ticket every November, the way your parents did, the way you believe a responsible person does. You would not, on most days, claim me, and that is fine.

Picture the security guard in a heist movie, the one the villain chokes out in a back hallway, strips to his undershirt, and leaves slumped behind a door while he strolls through the lobby in the guard’s uniform, badge clipped to the pocket, nodding past every checkpoint. Tennessee conservatives are that guard. The names on your ballot still wear a familiar uniform that puts you at ease, an R fixed to each one like a badge, and they move through the voting booth unquestioned. The figure inside those clothes stopped being one of you some time ago. Seeing that clearly is the most conservative act available to you.

Subscribe now

Before you decide I am a closeted liberal or one more “Never Trumper,” let me tell you where I stand, using someone else’s measurements rather than my own. The Pew Research Center released its newest political typology this month, sorting Americans into nine groups by values instead of party (Pew Research Center, 2026). I land in the one Pew calls the Pragmatic and Polite Right: economically conservative without being absolutist, in favor of border security yet opposed to mass deportation, partial to civility and proven solutions over heat and haste. People like me hold a dimmer view of the Republican Party than a favorable one, and a worse view still of the Democrats.

What conservatism used to mean

Fiscal conservatism once meant something plain in this state. Balance the budget. Hold down debt. Keep money in reserve for the hard year you cannot see coming. Spend the public’s money as though it belongs to the public. It does. Edmund Burke, the man who more or less invented the conservative disposition, set the bar in 1790: “A disposition to preserve, and an ability to improve, taken together, would be my standard of a statesman” (Reflections on the Revolution in France). Preserve and improve. Hold the line and still build the road. By that standard, Tennessee used to grow statesmen in both parties.

Bredesen and the guard on duty

Look at the list of former governors, and you see a state that breathed in and out. Lamar Alexander gave way to Ned McWherter, who gave way to Don Sundquist, who gave way to Phil Bredesen: Republican, Democrat, Republican, Democrat, each handing the keys to the other party without the republic ending. Tennessee argued with itself, and the argument produced governors who had to persuade rather than dictate. A politician who might lose the next election governs differently from one who cannot.

Phil Bredesen, a Democrat, governed to the fiscal right of plenty of Republicans. Over two terms, he balanced the budget every year, lifted the state’s Rainy Day Fund to a record high, and earned bond-rating upgrades while the 2008 economy collapsed around him (National Governors Association). He left office with the state on sound footing and a budget of nearly $30 billion. He managed it while Washington ran the other direction, financing the Bush tax cuts, a new Medicare drug benefit, and two wars on borrowed money, then swallowing the 2008 crash. Under a Democrat, Tennessee held to the right of its own federal government on fiscal discipline.

Honesty is the whole point of this essay, so I will leave the rest of his record unsanded. In 2005, Bredesen cut roughly 170,000 adults from TennCare to stop the program from swallowing the budget, one of the largest Medicaid rollbacks any state had ever attempted, and he later named it among his deepest regrets (Paris Post-Intelligencer). That austerity fell hardest on the poor, and it belongs on the Democratic side of my own ledger of complaints. The lesson here runs past partisan scorekeeping: this state once produced disciplined stewards across the aisle, and voters could choose between competing visions of prudence.

Haslam and the night the uniform came off

Bill Haslam did the conservative thing, and he did it twice in ways his successors would now call unthinkable.

In 2017, he raised the tax on gasoline and diesel, the first such increase since 1989, and spent it on roads (Tennessee Department of Transportation; Haslam administration, 2017). That is conservatism in its oldest form: users pay for what they use, infrastructure gets built, and the bill stays off a credit card the grandchildren will inherit. To make it pass, he paired the increase with roughly half a billion dollars in other tax cuts, trimmed the grocery tax, began phasing out the Hall income tax, and drove state debt to record lows. He also created Tennessee Promise, which made community college tuition-free. Preserve and improve, exactly as Burke drew it. Notice the timing. Haslam raised that fuel tax just as the national Republican Party, riding the Tea Party wave into an absolute refusal of any new revenue for any reason, was redefining tax itself as betrayal. He governed like an institutionalist while his party drifted toward fundamentalism.

Then came the hinge of this whole story. Haslam proposed Insure Tennessee, a plan to cover about 280,000 working-poor Tennesseans using federal dollars the state’s own taxpayers had already sent to Washington. A Republican governor, a conservative design, and a deal negotiated with the Obama administration to draw Tennessee’s money home. His own party’s Senate health committee killed it in a 7-4 vote during a 2015 special session and refused to let it reach the floor (Chattanoogan, 2015). A Republican governor’s prudent, fiscally sound plan died at Republican hands because compromise itself had become heresy.

Lee and the figure in the costume

Watch what changed under Bill Lee, and watch the federal weather behind him. During the Haslam years, the national party drifted toward a reflexive hostility to any tax for any purpose, and Haslam bucked it. During the Lee years, Washington flooded the states with COVID relief, and Tennessee’s treasury swelled with money it did not raise. A traditional conservative banks a windfall or returns it carefully. Lee’s Tennessee imported Washington’s newer theology instead, the one written into the 2017 federal tax law: cut deeply, treat the resulting hole as a later problem, and let transfers and accounting paper over the gap.

Consider three moves. First, the state generated more than a billion dollars in TennCare “shared savings” by spending less on its Medicaid population, the poor and the disabled, then treated the withheld care as thrift (Tullahoma News, 2025). Second, it stood up a private-school voucher program that now runs near a quarter of a billion dollars a year, with most of the new income-based scholarships flowing to families who were already paying private tuition (Chalkbeat, 2026). Third, in 2024 it enacted a franchise tax cut that returned $1.5 billion to businesses and carved a recurring $400 million hole in the budget, with the largest rebates flowing to the world’s biggest corporations, major lobbying firms, and the governor’s own family business, Lee Company, which he had placed in a blind trust before taking office (WPLN, 2025).

The CMS approved term for the bounty of Tennessee’s one-of-a-kind HCBS waiver is “shared savings,” but parents of the most vulnerable aren’t fooled. We see the sleight of hand while the audience cheers at the magic show. Every dollar the state banks by holding down TennCare is a dollar of therapy, equipment, or nursing that a poor or disabled child goes without. The mother filling out forms one-handed is the one financing this arrangement, her child’s denied services underwriting the voucher for a family that already pays private tuition and the rebate for a corporation headquartered three states away.

Read the behavior, not the badge. A government that steers its largest rebates to giant corporations, to lobbying firms, and to the governor’s own family business rigs markets rather than freeing them. A government that nearly doubled its budget in fifteen years, from Bredesen’s $30 billion to $59.8 billion this cycle, has misplaced its suspicion of growth (WSMV, 2025). A government that redraws the congressional map mid-decade to erase its only opposition district hoards power rather than limiting it (NPR, 2026). Add the national silhouette you already recognize: speech policed and books pulled from school shelves, the price of everyday goods climbing, the tax burden settling on the families least able to carry it. None of that is conservatism.

This spring, the state moved to cut disabled and terminally ill immigrant children from a small safety-net program. Reach for the most fragile kids you can picture: babies on home ventilators, children with cancer, leukemia, and lymphoma, kids with spina bifida and congenital heart disease, children whose lives are measured in months without treatment. The program serves about 4,640 of them for roughly $2.9 million a year, and the state ordered families without legal status reported to its new immigration-enforcement division (WKRN, 2026; Tennessee Title V Maternal and Child Health report, 2026). Limited government does not hunt children.

Blackburn and the open door

Every arc has an endpoint, and this one ends at the 2026 governor’s race. The frontrunner to replace the term-limited Lee is U.S. Senator Marsha Blackburn, polling more than fifty points ahead of her Republican rivals heading into the August primary (WKMS, 2026). Tennessee’s last three governors were wealthy businessmen who staked their own fortunes to win; Blackburn, a public official for nearly thirty years, has put in none of her own money. Her rival, John Rose, wrote his campaign a personal $5 million check. She wrote a different kind of check, drawn on a national donor network, and that distinction is the whole point.

Understand why that money targets August rather than November. In a state this gerrymandered, the Republican primary is the only election that decides anything, and the general has become a formality. A national donor who wants Tennessee buys the primary, where turnout runs thin, and a few million dollars travels far. One-party rule did more than silence the opposition. It moved the real election behind a door most voters never even open, then handed the key to whoever can pay.

Now follow the money; it tells you whose governor she would be. Between her campaign account and the affiliated Team Tennessee PAC, Blackburn has raised about $7.5 million, and only some $1.5 million traces to Tennessee-connected small donors. Roughly four of every five dollars came from outside the state (Tennessee Lookout, 2026). The largest single check, $1 million, came from billionaire Jeff Yass, a Trump-aligned megadonor and the financier behind Club for Growth, which has poured millions into Tennessee to push the very vouchers draining the public schools (Chattanooga Times Free Press, 2026; CNBC, 2024). Yass also invests heavily in TikTok, which lends the gift a dark comedy, since Blackburn spent 2024 branding the app a national security threat.

The rest of the donor list reads like a directory of industries that depend on the statehouse. Payday lender Advance Financial gave $300,000; it operates under a Tennessee carve-out that lets it charge 279.5% annual interest on its flex loans (ProPublica, 2024). Private-prison operator CoreCivic gave $100,000 while holding a $250 million state prison contract, and tobacco maker Reynolds American added another $100,000 (WKMS, 2026). These are vendors, and they are placing orders.

The bitter symmetry makes for a hard pill to swallow. In 2018, Blackburn won her Senate seat by defeating Phil Bredesen, the fiscally conservative Democrat who had balanced eight budgets. The candidate of out-of-state money beat the steward of in-state discipline, and now that same candidate stands one election from running the entire state on donations Tennesseans did not make.

Follow the money

When officials are pressed about the children, they reach for a single word: complicated. Complication is the costume scarcity wears when it would rather not be recognized. Pull the costume off, and the money turns simple to find. It is abundant, and the state is sitting on it.

I have told advocates for years to follow it. The state did not hand that billion dollars to Inspector Gadget to self-destruct in five seconds. The nonpartisan Sycamore Institute, no one’s idea of a left-wing outfit, traced the path: the federal savings pay for programs Tennessee already funded, which frees an equal sum of the state’s own General Fund dollars to spend, in Sycamore’s words, “seemingly without restriction” (Sycamore Institute, 2024). The state earns the savings by withholding care, then launders them into money it can spend on anything. Sycamore named the incentive without flinching: the design “increases the state’s financial incentive to reduce TennCare spending.”

A state that perfects a method exports it, and Tennessee has turned itself into a laboratory for converting public obligation into political theater. Manufacture savings by withholding care. Relabel the neglect as thrift. Redirect the freed money toward the donors and the favored. Then point a punitive law at whoever lacks the power to fight back. I am no one’s partisan, and I did not reach this conclusion through a party. I reached it across eleven years of watching the same families lose, no matter which slogans hung in the statehouse.

John Rawls asked us to design a just society from behind a veil of ignorance, choosing the rules before we learn which life we will be handed. Behind that veil, you do not know whether you will wake as the comptroller who signs the budget or as the mother who provides 24/7 care for her adult child on an empty Tennessee waiver. You do not know whether you will join the world as a child born healthy in Brentwood or born with a failing heart to a family without papers. No one standing behind that veil designs a state that hunts sick children to protect $2.9 million while over a billion dollars sits in reserve, pickpocketed from the most vulnerable as they stood waiting on a train of services that never arrived.

A failure of names

Confucius taught that order begins with the rectification of names. “If names be not correct,” he warned in the Analects, “language is not in accordance with the truth of things.” We are living through a failure of names. Reach for the old ones and they slip off. “Fascism” carries a history of mass columns and conquering armies this moment does not share. “Nazism” insults the murdered and misreads the present. Even “authoritarianism” arrives a size too large or too small. I will not hand this thing a borrowed name, since a borrowed name lets us stop looking. What I can describe is its conduct: it wears the costume of a movement it has hollowed out, it extracts upward, it punishes the weak, and it treats the next election as an inconvenience to be engineered away.

We reach for “history repeats” since the phrase hands us a playbook. If this rhymes with 1933, or with Huey Long, or with the Gilded Age, then a manual exists somewhere, and we need only find the chapter and follow the steps. That comfort is the trap.

Parents in my circle, the ones raising children with rare diseases or profound autism, share a refrain for the day the diagnosis lands: nobody handed us a manual. We learn to live inside a question no expert can fully answer. We improvise. We lean on people we never expected to need. We abandon the plan that was supposed to work, and we keep our child alive one uncharted day at a time. Most of us survive it. Some of us do not. I have read that distinction in too many late-night text threads to soften it now.

Today’s politics may have no manual either. The honest, uncomfortable possibility is that we are writing a chapter no one has written before, with no index and no answer key. Surviving it will demand what survival always demands of the unprepared: clear eyes about the thing in front of us, and alliances that feel wrong in the moment. The conservative mother in the waiting room may find that her child’s lifeline runs through a coalition that includes the immigrant family two chairs down, whose disabled son the state now wants to report. Comfort is the luxury we no longer hold.

I hold the left to the same standard, and it often fails; in my own advocacy, I have watched its orthodoxies harm the disabled people it claims to champion, and I have worn ugly labels from that direction too. The ask is clear sight. Your jersey is your own business.

So here is what I am asking, friend in the waiting room. Refuse the easy name, the one that lets you file this under a category you already understand so you can look away. Study the figure wearing your uniform and describe what it actually does. The movement that balanced the books, fixed the roads, and tried to bring your own tax dollars home to cover the working poor was the first thing this took. You were the guard at the door. They have your badge. We can argue about taxes and the size of government once we have the building back, and I will relish that argument, since it is an honest one.

No one is coming with a manual, but I have an extra pen if you’d like to borrow it. Children don’t vote or squabble online over politics. They inherently depend on the adults in the room to figure it out, whatever “it” is. Enforcement that targets a kindergartener on a ventilator is power choosing to prey on the weakest body in the room. Frederick Douglass observed that power concedes nothing without a demand. The demand here is almost embarrassingly modest. Leave the dying children alone.

Share

Before I tell you what is happening in Tennessee, I need to tell you who is telling you. This is not a bid for sympathy. Policy analysis arrives differently when readers know the writer’s hands, and the analysis I am about to publish requires that you know whether mine belong to a partisan operator, a grievance parent, or someone else entirely.

Subscribe now

I am the executive director for a national advocacy organization, advocacy director for a rare disease patient advocacy group, and most important, mom to an incredible young lady with severe autism and SynGAP1-RD. I have been a Tennessee resident for eleven years. The rest of the work has come out of our house and out of houses like ours. None of those facts predicts where I land politically, and that is part of the point.

Though I have done my fair time as a fanatic for each side of the two-party system we have in America, I am now beyond independent. The past decade has moved me into a position of anti-party altogether. I have lost some friends along the way, the ones who falsely perceived a lack of total fidelity to their chosen party narratives as allegiance to the “other” side. Most have stayed. Some have stayed at a distance, perhaps hoping I will see the light and come to their side, others perhaps as a nonadversarial source through whom they can see the errors in their own party’s messaging. Still others have become closer friends, the ones who, like me, have an allergy to bandwagons and have come to see that the extremes of either party are far more in alignment with one another than with “we the people.”

There will always be people thrilled with any action our government takes. I have no doubt that some of my friends are thrilled with recent Tennessee events, because I do not determine friendships along party lines.

Oddly, since my earliest days in elementary school, I heard adults telling me, “You could be the first female president of the United States.” My first-grade teacher spent her own money to supplement my mother’s hefty investment in keeping me supplied with advanced reading material on my preferred subjects: historical figures like Louis Pasteur, Edward Jenner, Maude Abbott, Daniel Boone, Johnny Appleseed, James Wilson, Patrick Henry, Frederick Douglass, Harriet Tubman, and Susan B. Anthony. My second-grade art teacher said it too: “Remember me when you become the first woman president of the United States.” I do not remember why he said it. All I remember of that class was being more interested in the combinations of colors I could create with the three primary colors he was trying to teach me. Maybe it had to do with the top front-fold feature of our county newspaper, where my rudimentary garbage truck and squiggly lines conveying the stinky smell ran alongside my letter to the state of New Jersey asking it to stop sending its garbage to Pennsylvania. My third-grade gym teacher called me “Jackie O.,” as in Jackie Onassis, because he said he knew I would be in the White House one day. I have no idea why he thought that. I certainly did not excel in anything athletic to have a gym teacher think I was anything beyond average, at best.

In those early years, I felt inept. I loved school, never missed a day, and was proud of the Ponderosa gift certificate awarded for perfect attendance. I wanted to make the adults in my life happy: my family, my church, my school. The straight As on one side of my report card never became the focus. What we focused on were the checkmarks on the other side. I talked too much, asked questions out of turn, and disrupted class. Some adults said I needed to slow down and take more time with my work, which made little sense to me because the grade was still an A. The problem was not that I was rushing. The problem was that I finished, with the correct answers, far too soon, leaving much too much time to be bored and to start trying to interact with other students still deep in thought on their tests and assignments. That is how the adults arrived at flooding me with as much reading material as I could consume. When I finished early, I could head to my little reading corner and disappear into a world of inspiring people who had changed the world against all odds, silently, without disrupting anyone.

I do not know why so many adults tried planting the seed of presidential ambition. I cannot remember any moment in my life when I aspired to be in that role, or in any role in politics. Defying the status quo, developing breakthroughs that benefit generations beyond my own, innovating systems that make life more bearable and fairer, building doors of possibility for people who do not have them: yes, yes, yes, and more yes. None of that lived inside politics for me. I saw politicians as the dignified arbiters who protected the order of society and protected our democracy. They were rule followers, and I had clearly already established that I was anything but.

The disruptor label only firmed by fourth grade, when my mother, exasperated with my behavior in public school, chose to pay private tuition so I could attend a more structured Catholic school. My family was a comfortable middle-class household, two state-employee parents at the supervisory level, three children, a mortgage. Private tuition was an economic strain. It was worth it, and my mother was right. I thrived in the transparent, rigid structure of Catholic school. Now, almost 46 years old, I can say with confidence that despite years of vehemently denying it, my mother was always right.

Instead of politics, my actual path took me into advocacy and public policy. I much preferred community organizing and activism. In all the decades I have been doing this work, no matter the focus (special education, disability rights, women’s rights, combat veteran reintegration, crisis intervention, military caregiver support, rare disease, healthcare reform, behavioral complexity, medical complexity, autism support, family caregiver support), I have carried the unyielding desire to quit, to find a place at the top of a remote mountain, disconnect from the internet and phone, live off the land, and avoid the exposure of carrying the torch. I have mitigated that desire by adopting a style that empowers others to advocate effectively, hoping the more extroverted will carry the torch.

Sometimes people try praising me. “You are such an amazing advocate for your daughter. She is so lucky to have you.” My answer is always the same: “for other kids, maybe; for her, not so much.” We have been through it. I will not pretend we did not have some wins along the way, but the trauma for her, for me, for her siblings, and for our whole family still existed. I did not stop it. I responded to it after the fact. I pushed through and always did my best to make sure the families coming behind me did not have to experience what we did, but that does not undo what we went through. If we are being honest, that does not make me a great advocate for my own daughter, after all, does it?

Different mobs settle on different labels for me, depending on who is doing the talking. None of the labels is accurate. They are emotive, and apparently, emotive is enough. Those in healthcare and school administration have described me as “uncooperative,” “troublemaker,” “unreasonable,” and “control freak.” Far-left voices have described me as a “eugenicist,” “ableist,” “quisling,” “nazi,” “fascist,” and “trumptard.” The far right, including politicians inside my own state legislature, have told me to “go back to California” (where I have never lived) and have called me a “libtard,” “socialist,” “communist,” “marxist,” and “snowflake.” On a bad day, I have collected all of these in one inbox.

I would be lying if I said none of them landed. Some do. The hurt is genuine, even when the labels are not. I list them not to elicit pity but to make clear what speaking honestly currently costs, and to note that I am about to do it again about Tennessee.

If it were only about my daughter and me, there would be a mountaintop somewhere with the two of us in rocking chairs, peacefully disconnected from society and from all this divisive outrage. I do not do this for us. I do it for the families who continue to reach out, week after week, with new and horrifying ordeals, doing everything they can to survive inside systems wholly unprepared to support them.

As hard as I try to empower others, build a thriving grassroots network, and amplify the voices of other families, from time to time, I am thrust back into center stage, my least favorite place to be. As the temperature rises, and as entire groups organize with detailed plans for how to destroy my life and target me as an enemy in need of elimination, I am grateful for the messages from the true friends who have remained. The people who, like me, have an allergy to bandwagons and mob mentalities, who know my heart, who defend me in rooms where I am not present. Some even abandon self-preservation to express publicly what they see in the work I do and how grateful they are for it. I do not do this for the accolades, so I do not need that or even want it. I worry for them. I know they are opening themselves up to the next mob.

If it comes at such a cost, why do it? Why not just shut up, as so many would prefer? What if I am wrong?

On the last one, I usually hope I am. Being right is never my goal. I do value providing credible claims based on validated evidence, and I am always happy to be proven wrong. I do not view being wrong as a character flaw. It means someone did not have all the pieces. We all try to make the best conclusions from the information available to us in any given moment. When I find that a claim I made was wrong, it means I have learned more than I knew before. That is a good thing. From my earliest years, my first love has been acquiring more knowledge.

Despite popular internet lore from my greatest haters, I could not care less about being right. I am not out to make anyone feel stupid, dismissed, or incapable. I never write with the Pollyannaish naivety that anything I say will change the hearts and minds of all. I write in the hope that one person, just one, receives the message and becomes the one who picks up the torch, makes life more bearable and fairer, and opens doors of possibility for the people still suffering. As Mike Graglia, co-founder and managing director of CureSynGAP1 and the wisest leader I have ever known, often says: “I am constantly trying to work myself out of a job.”

That is the why. Here is one piece of the what.

I have lived in Tennessee for eleven years, in each of its three grand regions: East, Middle, and West. The state functions almost as three sub-states, each with its own history, culture, and even its own seat of the state Supreme Court. Northeast Tennessee, where I lived first, remains my favorite place on earth, in part because the local and federal offices there listen to constituents and act on what they hear. My current West Tennessee representatives are courteous. They have not, in my experience, acted on a single concern I have brought to them, including alarms I raised about Medicaid fraud before it became a national partisan talking point.

In April 2024, I contacted my Tennessee state representative with reports, with receipts, of fraud inside TennCare, the state’s Medicaid program. The pattern was specific. Tennessee restricts certain enabling-technology purchases to approved vendors, and several of those vendors were charging far above retail. In one case, a vendor charged TennCare $3,553.20 for an item that cost $1,535.40 after taxes and delivery, a profit of 131%, or $2,017.80. The vendor had ordered the item from Lowes.com, a five-minute task that I, as a nearly shut-in family caregiver placing Amazon and Lowes orders almost daily, could have done myself for free. In another case, a vendor charged $657.95 for an iPad that Amazon was selling for $329 and Best Buy and even Amazon was selling, at various points within the same thirty-day window, for as low as $249—a 100% markup. Other parents had documented exactly the same pattern with their own invoices and concerns.

My representative’s response was to refer me to the state comptroller. I called. A one-way voicemail informed me I could leave information but would not receive a return call. I left a detailed message. I never heard back. None of the other parents did either. To our knowledge, no investigation has been initiated to this day regarding this practice in Tennessee.

The next essay is about Tennessee. How it became what it is. What it means for the people who live here. What we the people still might be able to do about it.

Tennessee was once a purple state, with productive debate, diverse representation, and elected officials who spoke their own minds. It now operates as a single-party autocracy. The legislature has set in motion the dismantling of the public school system. It has gerrymandered the final majority-Black district out of existence. It has stripped Democrats from committee seats entirely. I will walk through how it got here, what it means for Tennesseans regardless of party affiliation, and what is still possible.

The next essay may draw fire from both the left and the right. If historical patterns hold, each side will brand it as propaganda for the other. Maybe one person, just one, will read it and feel empowered to hold the line for democracy. If it sparks debate, I hope the discourse stays civil, that readers refuse to other one another, and that ideological differences do not become justifications for personal attacks or threats of harm.

Share

It started Friday, with emotionally-charged Facebook posts tagging me. Saturday afternoon, I was at my desk with my phone face-down, trying to do the boring middle of nonprofit work — donor reports, project timelines, the kinds of things no one writes Substack posts about — when an email titled Reprehensible landed in my inbox. The opening line said I should be ashamed.

By the evening, I had counted seventeen messages. By Sunday, twenty-six.

The Instagram post that started the cascade told its readers, by name, to send their concerns to me and provided my email address. [Clearly, this person was unaware of how nonprofits are structured. Boards don’t answer to the executive director; it’s the other way around.] The dean’s office at my vice-president’s employer, a prominent university, was copied separately for those who wanted to escalate. Helen Keller’s great-grandniece had written to many of my colleague’s faculty colleagues. The phrase Helen Keller’s great-grandniece had become a tagline.

This is what professional pressure looks like in 2026. It is well-organized, networked across Facebook groups and Substack subscribers and Spotify podcast listeners, and aimed at the people whose communities depend on getting the science right.

The volume isn’t the story.

I have been doing this work long enough to know that the volume is the ordinary cost of public advocacy on questions that touch families’ grief. The volume is what you accept when you accept the job.

What is interesting is what the messages were for. And what they were not about.

Subscribe now

What you can verify yourself

In March, The New York Times ran a glowing review and a Today Show book-club tie-in for a 28-year-old novelist named Woody Brown. Brown communicates by pointing at letters on a board his mother holds. His mother reads the letters aloud. His mother is a former Hollywood story analyst with a master’s in English literature from Northwestern who quit her job in 2012 to take care of him full-time.

The novel — Upward Bound — was published by Hogarth, an imprint of Penguin Random House. It went to the top of Amazon’s bestseller list. Two weeks before Upward Bound came out, Penguin canceled the U.S. release of another novel — a horror book called Shy Girl — after reviewing it for evidence of AI-generated text. Penguin would not tell The Atlantic‘s Daniel Engber whether it had attempted any comparable verification on Brown’s novel (Engber, “The Publishing Mystery That No One Wants to Talk About,” The Atlantic, April 15, 2026).

Engber went back to the Today Show footage. He watched it at quarter speed. When Brown’s mother said To finally be in the room where learning was happening, Brown’s finger appeared to tap Tobgdhi nvza. When she said Without her, there is no me, his finger appeared to point at Wdeha brjum.

The letters Brown was tapping did not spell what his mother said.

Engber published this on April 15. Amy Lutz published her New York Times op-ed two weeks later. The four highest-recommended comments under Amy’s piece — comments with between two hundred and six hundred reader endorsements each — were not about facilitated communication science at all. They were demands that The New York Times account for its own March coverage of Woody Brown.

Sit with that.

The most-engaged response to Amy’s op-ed was readers asking the paper to reckon with its own previous reporting. Not skeptics. Not parents. Not the clinical literature. Readers. The mob upset about Amy’s piece is shouting at the wrong defendant. The general public, when they read Amy, was upset about the paper that published her.

Amy’s piece did not name Woody Brown. We will probably never know whose decision that was. The most influential paper in the country published an unverified celebration of facilitator-mediated novel-writing in March, then published a critique of facilitator-mediated communication in May without addressing its own earlier coverage. The gap is in the public record.

The method, the test, and the answer

Most readers shouldn’t need to know this vocabulary, but here it is, briefly. Facilitated Communication (FC) is a method, popularized in the late 1980s, in which a non-disabled “facilitator” provides physical support — touching the speller’s hand, wrist, elbow, or shoulder — while the speller points to letters on a keyboard or board. Rapid Prompting Method (RPM), Spelling to Communicate (S2C), and The Spellers Method are subsequent rebrands. The American Speech-Language-Hearing Association (ASHA) bundles all of them as “facilitator-dependent techniques” and calls them “discredited” and “pseudoscience” (ASHA, 2018). ASHA’s position is consistent with at least nineteen other professional and advocacy organizations across six continents (Hemsley et al., 2025). One of the authors of the most recent academic synthesis, Sharon Skinner, is an autistic adult.

The empirical question has been the same for thirty years and has had the same answer.

In every controlled message-passing study from the 1995 Journal of Applied Behavior Analysis paper to the present, the answer has been no. When the facilitator can see the prompt, the speller is correct. When the facilitator cannot, the speller is wrong, or unable to produce a coherent response at all (Saloviita et al., 2014; Hemsley et al., 2018; Schlosser et al., 2019). This is not a question of sample size. Each speller is their own control. The same person, the same facilitator, the same letterboard — only the facilitator’s information access changes. The pattern is consistent.

The most recent systematic review of Rapid Prompting Method, published in 2019, found zero studies meeting basic methodological criteria — what its authors called “an empty review that documents a meaningful knowledge gap” (Schlosser et al., 2019).

In 2017, a New Jersey appellate court reviewed the conviction of a Rutgers professor named Anna Stubblefield, who had used facilitated communication to claim that a severely cognitively impaired man — referred to in the public record as D.J. — had consented to sexual activity with her. D.J. was nonverbal, wore a diaper, and had been judicially adjudicated as incapacitated (State v. Stubblefield, A-2112-15T1 (N.J. App. Div. 2017)). When his mother and brother became suspicious, they ran their own informal authorship test. They asked D.J. questions only D.J. would know the answers to. The FC-mediated answers were wrong.

That is the test. It took five minutes. It was the evidence that broke the criminal case.

The pattern in the public record

Amy’s op-ed cited the Wendrow case in Michigan. Julian Wendrow spent 80 days in jail after his daughter, via facilitated communication at school, “spelled” out accusations against him. His wife was charged with neglect and forced to wear an electronic tether. Both children were placed in foster care. The facilitated testimony described nonexistent rooms, named relatives who did not exist, and attributed Christian theology to observant Jewish parents. When the daughter was questioned without her facilitator present, she could not answer “What color is your sweater?” or “Are you a boy or a girl?” The case settled for $1.8 million.

In January 2025 — last year — a father named Kevin Plantan was released from prison after ten months of incarceration on facilitator-mediated allegations from his teenage daughter. Howard Shane (Boston Children’s Hospital, Harvard Medical School) and James Todd (Eastern Michigan University) — both authors of the academic synthesis I cited above — advised the defense. The mother continues to use facilitated communication with the daughter as of this writing.

In 2010, Gigi Jordan force-fed her eight-year-old son a fatal cocktail of painkillers and anti-inflammatories. She believed he had typed, through facilitation, that he wanted to die. The court documented that the child likely could not spell the words his mother said the facilitated outputs contained. Jordan was convicted of first-degree manslaughter. She died by suicide in 2022, hours after the Supreme Court revoked her bail.

By 1995 there were already at least 60 documented cases of false abuse allegations through FC. The pattern continues across thirty-five years and four continents (FacilitatedCommunication.org).

I want to be precise about what I am not claiming. I am not claiming disabled people don’t experience abuse. They do, at higher rates than the general population, and the documented underreporting is real. I am not claiming parents abuse disabled individuals at higher rates than formal supports. I am not claiming every parent using a letterboard is gullible. The mechanism is not gullibility; it is the ideomotor effect, the same unconscious motor response that explains why Ouija boards “work” (Burgess et al., 1998; Shin, Choe, & Kwon, 2023). I am not claiming the children involved have no inner lives. They do. They are not in question.

I am claiming that when a method’s outputs cannot be reliably attributed to the speller — when the very test that would attribute them is the one its practitioners refuse — those outputs cannot legally, medically, or morally be treated as the speller’s voice. The plastic isn’t the harm. The social practice around the plastic is.

What is happening in federal policy this week

This is the part of the story that did not appear in Amy’s op-ed and has not appeared in most of the coverage.

On April 28, six days before this writing, the Interagency Autism Coordinating Committee (IACC) — the federal advisory body that recommends autism research priorities to the Secretary of Health and Human Services — voted to send Secretary Kennedy a recommendation to adopt a federal “profound autism” designation that explicitly removes intellectual disability (ID) from the diagnostic criteria. The cited rationale, in the federal record, is that “minimally speaking or non-speaking individuals with very high support needs demonstrate normal or above-normal intelligence with augmentative communication” (IACC, Topic 2 Attachment C — Profound Autism Final, April 28, 2026).

That sentence is the spelling movement’s central empirical claim. It is now in a federal policy document.

Here is what the redefinition does. The term “profound autism” was introduced in 2021 by the Lancet Commission on the Future of Care and Clinical Research in Autism, describing autistic individuals with the highest support needs — those with intellectual disability, severely limited language, or both (Lord et al., 2022). In May 2025, the Autism Science Foundation and the Profound Autism Alliance organized a Delphi consensus process — roughly 140 researchers, clinicians, parents, and autistic stakeholders — to refine the operational definition for federal research use. Intellectual disability remained one of two qualifying criteria, joined to nonspeaking-or-minimally-speaking communication by an “and/or” (Psychology Today, 2025). IQ was in both the Lancet and the Delphi definitions. Per CDC data, 42.7% of people qualifying as profoundly autistic do so on the basis of intellectual disability alone (Hughes et al., 2023). The IACC’s new definition removes that leg. The constituency I have spent my life advocating for would no longer be the population that “profound autism” describes in federal research and reporting.

Alison Singer, President of the Autism Science Foundation, was the senior author of the consensus profound-autism definition the IACC just rewrote. She is also a twelve-year veteran of the IACC and serves on the board of the organization I direct. She published a public statement the same day as the meeting (Autism Science Foundation, 2026).

Excluding IQ does not serve the interests of the profound autism community; it serves only the interests of a very small subpopulation of people who support facilitated communication, like Spelling to Communicate (S2C). Many proponents of S2C, several of whom serve on the federal IACC, resist including IQ in the definition of profound autism because they believe IQ tests underestimate nonspeaking autistic people.

She wasn’t speculating. Daniel Engber’s Atlantic piece, two weeks before the IACC meeting, reported that Secretary Kennedy in January appointed “two letter-board users and an expert trainer in Spelling to Communicate” to the IACC. The pro-spelling movement’s own International Association for Spelling as Communication confirms one of those appointees by name in their public-facing blog: Hari Srinivasan, a graduate student in neuroscience at Vanderbilt and a published author, is identified as a board member of the IACC (Le Pape, I-ASC).

The concern is not personal. Mr. Srinivasan has a verifiable academic record, and I will not punch down. The concern is structural. A federal advisory committee that recommends federal autism research priorities cannot be received as expert consensus when it includes interested parties to one side of the very question its recommendations address. This is true regardless of whose communication methodology is at issue. It would be true if the spelling movement were correct on the facts.

Singer also documented that the IACC meeting “likely violated FACA rules” — the Federal Advisory Committee Act — by circulating final documents and expecting members to vote on them without input. In her twelve years on the IACC, she had never seen materials marked final before the meeting at which they were voted on. The procedural problem is in writing in the public record by a former IACC member.

Federal autism research funding follows federal definitions. If HHS adopts the IACC recommendation, money for “profound autism” research will flow toward studying spelling-claimed-intellectually-intact nonspeakers. The constituency the term was developed to describe — people with both intellectual disability and severe communication impairment, who require continuous supervision and lifelong care — will lose its definitional anchor.

Senator Patricia Fahy, sponsor of a New York bill S7992, “Communication Bill of Rights,” is under intense pressure by the same mobs filling my own inbox. What horrible act did she commit to warrant such ire? She amended the bill to include the words “autonomous and validated.” Without those amendments, the bill would have legislatively recognized facilitated communication and its variants as equal competitors to scientifically validated methods of communication for the limited funding and resources for communication supports in New York. The same coalition pushing the IACC at the federal level had been pushing New York at the state level for months.

The mob in my inbox is the loudest layer. The policy story is the consequential one.

The strongest argument from the other side

If you want to find what the spelling movement actually argues — not the rage emails, not the Facebook posts — read “Top 10 Myths About S2C Debunked” by Jennifer Binder Le Pape on the I-ASC website. It is the most sophisticated, structured, well-cited document the movement has produced. Anyone who shares opposition material with you about Amy’s piece will eventually share it. I want to engage it directly, because it deserves the engagement.

The piece cites three academic researchers as supporting evidence: Elizabeth Torres at Rutgers, Alex Woolgar at Cambridge, and Vikram Jaswal at the University of Virginia. The motor-research and receptive-language-research questions are real and important, and the answers they yield (autistic people often have neuromotor difficulties; nonspeakers often comprehend spoken language) are not in dispute. Neither addresses the authorship question. Jaswal’s eye-tracking work has been specifically critiqued in peer-reviewed literature (Beals, 2021; Vyse, 2020).

The piece argues that “natural message passing” — spellers conveying medical symptoms to doctors, for instance — should count as authorship evidence. It cannot. Controlled tests exist precisely because uncontrolled observations cannot rule out facilitator inference, contextual cues, prior knowledge, or coincidence. The reason the test requires controlled conditions is the reason “natural” observations don’t substitute for it.

The piece argues that prompting is universal in special education — Applied Behavior Analysis, the Picture Exchange Communication System, speech and occupational therapy. This is the strongest individual point in the document. It also has an answer. Mainstream prompt-based instruction explicitly aims to fade the prompts, so the user communicates independently. The I-ASC document itself, in its discussion of Myth 4, acknowledges that many users remain dependent on a Communication Regulation Partner for years or permanently — eight years and three thousand hours of practice, in one cited case, to achieve sixty minutes of independent typing. Prompts that never fade aren’t supported communication. They are the partner becoming part of the communication system itself.

The piece closes by asserting that “a small group of detractors cannot unilaterally declare these methods to be ‘debunked.’” The “small group” is the international consensus of nineteen-plus professional organizations across six continents and the entire current peer-reviewed academic literature on the question. That framing is rhetoric; the institutional consensus is documented.

I am going through this not to be combative but because if you read the I-ASC piece — and you should, because I have named it — you will see that each rebuttal addresses a real objection but does not survive careful examination. That is the empirical question. The opposition’s strongest case has the same gaps as its weakest.

Where I land

Before I get there, a line.

I have friends who use spelling methods with their kids. I know the love is real. I know the years of trying everything are real. Those families are always welcome in my circles. Whatever method they are using to try to reach their children is their call, made with their time and their funds and their love. I am not interested in being a gatekeeper to anyone’s family.

What I will not give a single inch of patience to is the part of this movement that has decided being asked an empirical question is grounds for harassment. People who tag a colleague’s dean and twelve of her academic colleagues to get her professionally punished. People who flood an inbox demanding that an organization repudiate a board-endorsed op-ed. People who armchair diagnose strangers with trauma in public Facebook posts. People who toss ad hominems like confetti and call it activism.

Those are different groups. The first are people who would likely be quite angry at the bullies if they saw half of the senseless mischaracterizations of my colleagues and me. The second is what I am responding to in this essay.

The mob in my inbox is asking my organization to repudiate Amy’s op-ed. Speaking only for myself: the answer is no.

The op-ed is correct. The institutional ground it stands on — ASHA, the Australasian Society for Intellectual Disability, the international academic synthesis literature— has been the consensus position of the organization I lead for years (NCSA, 2021). The National Council on Severe Autism board has unanimously supported Amy’s piece. So has the Autism Science Foundation, publicly. There is nothing to repudiate.

I’m also not asking for anyone to be banned from anything. Families are free to try whatever interventions they want, with their own time and their own funds. The dispute has never been about private practice. The dispute is about whether the state should enshrine unvalidated methods as legally recognized communication, whether federal research dollars should flow toward them rather than toward catatonia treatment access (the policy fight Amy has led for a decade), and whether facilitator-mediated outputs should be treated as the speller’s voice in courtrooms, classrooms, and federal advisory committees.

I will keep saying — in the work I do, on this page, anywhere — what I and the international consensus say already: that every form of independent communication deserves enthusiastic support. Independent typing on an iPad is communication. The Picture Exchange Communication System is communication. American Sign Language is communication. Vocalizations, gestures, behavior, and facial expression are communication. Feature-matched augmentative and alternative communication assessment, conducted by qualified speech-language pathologists, is the affirmative answer to “what do we do for nonspeakers.” The dispute over facilitator-mediated typing has never been about whether nonspeakers can communicate. It has been about who is communicating when a partner is required.

There is a deeper move I want to name, and it comes from a clinical psychologist whose name I do not know who left a comment under Amy’s op-ed. The facilitated communication movement is built on a hidden premise — that a nonspeaking person needs to be revealed as secretly intelligent in order to deserve dignity. The healthier ground is that profoundly autistic people deserve dignity, autonomy, and care as they are. Intelligence is not the cost of admission to being valued. My organization exists because the population it serves — people with severe forms of autism and intellectual disability, who require continuous supervision and lifelong care — deserves federal research priorities, supported housing, electroconvulsive therapy access for catatonia (which over 30 years of scientific literature actually validate as safe and effective), wandering safety measures, and a public-policy environment that names their actual needs. They do not need to be reframed as secret valedictorians to deserve the help.

The autistic adults who agree with this position are not absent from the conversation. Jonathan Machnee, an autistic writer who spent a decade inside the neurodiversity movement before publicly leaving it, called facilitated communication “a long-debunked pseudoscience that has been very thoroughly shown to not involve actual communication from the autistic person” three weeks ago in his Substack. He is one. There are others. The opposition’s “no autistic voices in your article” framing is selective: it counts autistic voices that agree with the spelling movement and discounts autistic voices that don’t.

What you can do

Read the documents. Read Amy’s op-ed (Lutz, NYT, May 1, 2026). Read Daniel Engber’s piece in The Atlantic. Read Zaid Jilani‘s December 2024 reporting on The Telepathy Tapes, in which the podcast’s own scientific advisor admits the cases featured in the show don’t meet her own evidentiary standard. In a follow-up six months later, Jilani documented the show’s producers using a copyright complaint to try to suppress a YouTube debunking by Janyce Boynton — a former facilitator who broke from the method after failing the same blinded test that broke the Stubblefield case (Jilani, 2025). Read Autism Science Foundation‘s public statement on the IACC. Read the I-ASC document I named, alongside this one. The arguments deserve direct engagement.

Write to your state senators about communication-bill legislation. Senator Fahy’s amendments to New York’s S7992 are the model. The state should not legislatively recognize unvalidated communication methods while the validation question remains open.

Write to your federal representatives about the IACC. The committee’s recommendation to remove intellectual disability from the federal “profound autism” definition would functionally erase nearly half of the constituency the term was developed to describe. Singer’s public ASF statement and the Hemsley et al. 2025 academic synthesis are the documents to attach..

If you get sent another Instagram/Facebook post or email telling its readers to ask me or my organization to repudiate Amy Lutz’s op-ed, you can forward this essay instead. The board of the National Council on Severe Autism has fully endorsed her piece. So has the Autism Science Foundation. So have the international professional organizations whose position statements span four decades.

The plastic letter board is the surface. What is behind it — the policy fight, the institutional capture, the harm catalog, the empirical question that has had the same answer for thirty years — is what I am not going to stop saying out loud.

I don’t get to opt out of this fight. None of the people who have been doing this work for decades do. The federal record is being written this year. So is the state legislative record. So is the scientific record.

The question is whether the institutional consensus, built across forty years and four continents, will be drowned out by a mob, or whether it will hold.

It will hold. I am going to keep holding it.

Share

Jackie Kancir is the Executive Director of the National Council on Severe Autism (NCSA), a national advocacy organization focused on the needs of individuals and families affected by severe forms of autism and related neurodevelopmental disorders. The views in this essay are her own.

This year, Tennessee released a glossy graphic announcing that it would be “Celebrating Autism” throughout the month. Cheerful fonts in all caps defined tiles of “purpose, progress, people.” The progress tile stated: “Each year, we feature individuals with Autism to show how it doesn’t just impact their lives but enhances them.” In the final tile, it noted: “In years past, we’ve featured artists, musicians, business owners, military members, athletes, and more!” It looked like an ad for summer camp.

I stared at it the way you would at a big red C minus on a paper you worked on for weeks, wearing a weight of disbelief while questioning what more I could have done. My daughter would have loved summer camp, if any would have accepted her.

The grief rolled into a familiar ire as the reel of repeated rejections began to play in my mind. Supposed inclusive programs. Supposed disability services. Doors closed by people who said she was “too severe” before even giving her a chance.

Merriam-Webster defines the word enhance as “to increase or improve in value, quality, desirability, or attractiveness.” The campaign title is “Proud to Be Me,” but instead of celebrating the person with autism, it celebrates their disorder. The message is not that they’re inherently great. The message is they are great because autism enhances their value, quality, desirability, and attractiveness.

My daughter is almost twenty-three. She has autism, not the glossy poster kind, though.

Subscribe now

I celebrate her every single day. I do not celebrate her autism. The difference matters.

I celebrate that she cheerfully swallows her pills, considering she takes twenty-eight a day for seizures, for catatonia, for impulse control, for nerve pain. I celebrate that twenty-eight is twelve fewer than she was taking six months ago.

I celebrate that she can gather seven dozen eggs without breaking a single one, a skill we worked months to achieve when she was twenty.

I celebrate her contagious glee as she cracks and swirls eggs while asking, “Want some?” Her playful laughter is preloaded to launch the second I say “No thank you” on cue.

I celebrate when she puts on two of the same type of shoe, whether they match or not. It means I won’t have to field her agitation, the kind that can quickly become aggression or self-injury, when I try to convince her it will hurt to wear one boot and one dress shoe.

I celebrate every time I safely put the car in park after a long drive, especially the drives she couldn’t tolerate the motion and raged while I drove seventy miles an hour on the highway.

I celebrate her graceful, silent renditions of the choreography to the original Frozen soundtrack—so accurate I know exactly which verse of which song is playing in her mind.

I celebrate how intuitively she cares for the most fragile baby animals on our farm and the empowerment she feels as she steps outside of always being the one who needs care and into the role of caring for another being.

I celebrate when she squeezes my hands and starts to match my breathing as she comes down from an episode of serious dysregulation.

I celebrate when she flies down the road on her bike and when she yells, “I ok!” before pushing it up and climbing right back on after a fall.

I celebrate when she says, “Help please.” I celebrate when she yells “No! I do it!”

I celebrate when she sits next to the chicken brooder with a book, turning pages, narrating in sounds I cannot understand. She can’t read, but she is telling those chicks a story, and her undulating inflection is captivating.

I celebrate when she asks, “Not yet?” no matter how many times, because it means she is waiting now without spiraling. For most of her life, “not yet” felt like “not ever” to her.

I celebrate her love of the camera, on either side of the lens. Her photographs tell me what matters to her. She is a natural in front of it, puckering for lipstick, striking a pose, begging: “Picher me, Mom. Picher me!”

I celebrate the confidence that radiates from every cell of her body in every room she enters. She knows she is valued. She knows she is loved. She is so proud to be her.

I celebrate her.

I do not celebrate autism.

She is not great because of autism. She is great—period. Autism doesn’t get credit for her value. That credit belongs entirely to her. Her own drive to overcome so many challenges autism presented for her is why she is who she is today. To celebrate autism instead of her inherent value is a mind-bending betrayal.

There are many forms of autism. Hers, originating from a C switching with a T on her 6th chromosome, stole eight years before she could utter her first approximation of “I love you,” and several more before she’d gain seizure control. She has not had a single day in nearly twenty-three years when she could experience the most private moments, bathing or toileting, without someone in the room to help. She doesn’t understand when girls her size at the park turn their backs. She doesn’t understand when a parent scurries their small child away from her. She doesn’t understand why the school bus doesn’t come anymore.

I celebrate that she settles happily for fifty worksheets spread across the floor with a hundred colored pencils, calling it “school,” and that the farm animals rush to greet her like she is queen of the world.

Her form of autism, caused by SynGAP1-RD, doesn’t call for celebration; it calls for a cure. It calls for extensive policy reform to build supports that will actually support her when I am gone. It calls for an end to sanitizing a heterogeneous disorder into a monolithic superpower campaign.

So when a disability campaign designs a cheerful graphic about “celebrating autism,” I would like them to consider that they are using the word “celebrate” about a disorder that has routinely slammed doors in her face. Some of those doors I kicked down. Most of them I couldn’t.

April has become a battleground. Autism Awareness Month, Autism Acceptance Month, Autism Action Month, and now Autism Celebration Month? Every rebrand reveals the same problem. The people naming the month are almost never the people living the hardest versions of it. The posters feature autistic people who are “business owners, military members, and athletes,” and that is a good thing, but those same posters can be a cruel comic strip for many who cannot say otherwise.

My daughter cannot write an essay. She cannot stand at a microphone and articulate what autism means to her. She has grabbed the microphone in the very room we hold policy and planning meetings for the department that launched this campaign, and said, “My turn,” though. I hope whatever you call this month, you remember her turn.

I celebrate the privilege of hearing “my mom” from such an amazing young woman.

Don’t celebrate her autism. Don’t brand it. Don’t put it in a cheerful font.

Just celebrate her.

Share

Representative Nanette Barragán had just heard those numbers from Barbara Merrill, CEO of ANCOR, the American Network of Community Options and Resources. “You brought up a number that I had not heard before,” Barragán said. “$70,000 to keep a person in in-home care versus $395,000. That’s a huge difference. That’s a pretty big savings.” She didn’t ask how they got such a big difference. She didn’t ask if it was comparing apples to apples or apples to oranges. Nobody on the Subcommittee did.

They should have, but they never do.

ANCOR describes itself as “a national association representing more than 2,500 private, mostly non-profit, organizations that deliver life-enhancing, cost-effective, home and community-based services to people with intellectual and developmental disabilities.” Read that again. ANCOR represents providers. Not people with disabilities. Not families. The organizations that bill Medicaid for HCBS. That distinction matters, because it explains everything about the testimony Congress heard that day, and everything it didn’t.

I volunteer and work with a number of organizations that represent the families those providers cannot, or will not, serve. My family is one of those families.

Subscribe now

My daughter has had an HCBS waiver since 2018. Despite requiring 24/7 care for safety, supervision, activities of daily living, medication management, and more, there are no billing claims for personal care attendants, independent living skills training, respite, or anything other than a small monthly stipend to me. For nearly two years, since eight days after she turned 21, no one but me has provided any of her care because “no providers available.” That phrase doesn’t mean there are no providers in the area. It means there are none who will serve her: a young woman with SynGAP1-RD, severe autism, intellectual disability, Lennox-Gastaut Syndrome, catatonia, and a history of aggression and self-injury. Her case is not unique. This is the typical situation for adults with severe forms of autism in most states.

My daughter still shows up in the data. She shows up as a low-cost participant because she isn’t receiving services. She drags the national average down. So do the hundreds of thousands like her.

Where states do serve individuals at this acuity level through HCBS, the costs look nothing like $70,000. In California, some individuals on self-directed waivers are receiving over $1 million per year for their care. In New Jersey, the State Ombudsman documented that HCBS group homes in residential neighborhoods receive between $250,000 and $500,000 per year per resident. Not institutions. HCBS group homes. The ones Merrill told Congress work at $70,000 a head.

Merrill didn’t mention any of this. She had five minutes. She chose to spend them on a story about a provider in Colorado, a $70,000 average that hides more than it reveals, and a veiled threat: give us more money or disabled people go back to getting chained to radiators.

It’s compelling. No one forgets those images of starved bodies covered in bruises. Except we aren’t talking about how those same images are still occurring. Yana Mermel, a mother in New Jersey, fought valiantly for justice for her daughter who was nearly starved to death, denied care, locked in a room, in a group home. Her advocacy led to the passage of new group home safety bills in New Jersey recently.

When Representative Debbie Dingell asked Merrill why HCBS is a good investment, the answer should have been about the people the system serves. It should have been about health outcomes, quality of life, independence, safety. Instead, Merrill cited a Missouri study showing that a $1.6 billion investment between 2022 and 2024 generated nearly $6 billion in economic activity. Then she explained how:

“When you invest in HCBS, and people have jobs, and they are supporting people with disabilities and their families, they’re buying groceries. They’re buying cars. They’re saving to hopefully buy a house someday.”

She continued: “Providers are businesses, providers are spending money, providers are buying groceries, providers are contributing to the economy in just a completely wholesale way.”

Asked to justify the investment in disability services, the CEO of the provider trade association justified it as an investment in providers. The person with a disability was the pretext. The provider was the point.

ANCOR was lobbying for HCBS mandates so providers can shop organic at the grocery store, but my daughter would still be sitting with “no providers available” as they drove past in their new car.

Then Merrill invoked emergency room boarding, people with disabilities stranded in hospitals for weeks or months because no placement exists. “We save money because people aren’t going into large, expensive institutions,” she told the Subcommittee. “People aren’t winding up in emergency rooms where the emergency rooms can’t discharge them because they can’t find a placement.”

She named the crisis and asked Congress to mandate (expand) the system that created it. The reason those individuals are boarded in emergency rooms for months is that HCBS providers, her members, will not accept them. The behaviors are too dangerous. The staffing is too intensive. The reimbursement is too low for the direct support professionals. The system Merrill told Congress works at $70,000 a head has no room for these people. She knows it. Her members are the ones turning them away.

Every answer Merrill gave the Subcommittee followed the same architecture: an appeal to fear built on a false dilemma. Invest more in HCBS or it’s back to big state-run institutions. $70,000 or $395,000. Community or Willowbrook. There was no third option. No mention that 93% of stakeholders in a Colorado study just last fall want intentional communities as a housing option, purpose-built settings designed around the needs of the most severely disabled. No call for innovation. No acknowledgment that CMS’s own HCBS Settings Rule blocks the models families actually want, because the rule presumes that any setting where individuals with disabilities are clustered is inherently “institutional.” The irony would be funny if it weren’t destroying lives.

A four-bed group home staffed by a $17-an-hour worker, where the provider agency is permitted to self-investigate its own abuse allegations, can be every bit as institutional as the places we shuttered. The problem was never the architecture. It was the culture of care. Peer-reviewed research demonstrates that the defining characteristics of institutionalization are features of organizational culture, not building type. HCBS has not changed that culture. It has relocated it into smaller buildings, and trade associations like ANCOR have invested heavily into selling the lie for us to believe that is progress.

The false dichotomy serves ANCOR’s business model. If Congress believes the only two options are HCBS group homes or state-run institutions, then every dollar must flow through ANCOR’s member agencies. Intentional communities, specialized residential models, anything that doesn’t route Medicaid reimbursements to existing provider networks, all of it becomes a threat to the narrative and the revenue. The Settings Rule isn’t a bureaucratic accident. It’s a moat.

Fredrik deBoer, in his book How Elites Ate the Social Justice Movement, describes how organizations built to serve vulnerable populations develop “exquisitely fine-tuned systems for turning your money into ash.” Over time, the organization’s energy shifts from mission to self-perpetuation. The movement gets captured by those with the cultural capital and economic stability to control it, while the people who stand to benefit most “lack the cultural capital and economic stability to have a presence in our national media and politics.” The result is an advocacy infrastructure that speaks for the vulnerable without being accountable to them.

ANCOR is that pattern in its most distilled form. A trade association whose members collect Medicaid reimbursements, whose direct support professionals earn poverty wages while provider executives testify before Congress, whose agencies discharge the hardest cases and then cite a national average that hides those very exclusions. An organization that, when asked by a United States congresswoman to justify its existence, talked about groceries and cars and the economic multiplier of its own funding stream.

I wrote last fall, after The Arc of the United States coordinated a national media campaign that erased families affected by the most severe forms of autism, that “true inclusion means facing the full reality, even when it is uncomfortable.” The uncomfortable reality here is harder and more structural than a bad press strategy.

The New Jersey Ombudsman’s 2024 Annual Report documented one provider agency CEO earning just under $1 million a year while direct support made $17 an hour and the residents were living in fire-damaged buildings with broken windows and rotting structures. That is the system ANCOR asked Congress to expand.

I do not want to dismantle HCBS. I want it to work more than anything. I do want to expand HCBS, to shed it from its regulatory hostility towards innovative models of care, to invest in training and higher wages for direct support professionals, to have it live up to its promise as a true alternative to institutionalization. Naming these problems out loud is how we start to resolve them.

Administrative bloat is the greatest threat to disability services in American healthcare. Our legislators don’t know the numbers. It’s on all of us to ensure that Congress has a clear full picture of the systems they are asked to fund. We cannot fix what we don’t acknowledge.

Call your legislators. Tell them why we need the HCBS Settings Rule changed, why we need innovative housing models, why we need investment in DSPs and doctors trained for patients with IDD, why we need fair tiered reimbursement rates based on support levels, and why we need administrative bloat out of American healthcare.

I have submitted a letter for the hearing record to the Energy and Commerce Health Subcommittee with specific policy recommendations.

When you hear $70,000 per year, ask: “Who is not in your average?”

The families know. They have always known. They need Congress to know and to act.

Share

That post is going viral on social media right now because it resonates with many families. It ends with a simple instruction: “mind your business and let us get through it.”

I know exactly what that feels like.

That sharp, exposed sensation of being seen when everything in you wants to disappear. The heat rising under your skin. The way every set of eyes becomes something you have to brace against.

The noise. The unpredictability. The sense that everything is slipping faster than you can catch it. The calculation running underneath it all, steady and relentless:

How do I get us out of here safely?

And the other thought, the one you don’t say out loud:

Please don’t make this harder.

Most of the time, the kindest thing someone can do is exactly that. Keep moving. Don’t crowd. Don’t turn it into something bigger than it already is.

Most of the time.

But not always.

Some moments don’t stay contained. Some moments break the boundaries we try to hold around them. In those moments, there is no version of this you can solve alone.

In case you ever find yourself passing a family in this type of distress, I want to share a few examples of the type of help that did just that; it helped.

Subscribe now

A water park. Chlorine thick in the air. Sunscreen. Heat rising off wet concrete. The constant rush of water and distant laughter that no longer felt like it belonged to us.

I had taken my eyes off my daughter for a moment, just long enough to put sunscreen on her younger brother.

When I looked back, she was already moving up the stairs leading to the highest platform in the park—the free-fall slide.

A thirteen-year-old girl so tiny that she looked only ten. Barely any language. An IQ of 40. A seizure disorder. A body that could betray her without warning. A girl more likely to run forward in fear than safely turn back.

I told my eight-year-old son not to move. Too sharply. Then I ran.

By the time I reached her, she was on the grated landing between levels. The metal sharp under our bare feet. Water splashing down on us from the slides above.

Then it shifted.

Her body hit the ground. The water made her slippery, impossible to hold. She flailed, slammed against the grated metal, her skin already breaking. Blood mixed with water and ran in thin, diluted lines down her arms and legs. Her screams cut through everything.

People kept moving.

The metal clanked as they climbed past us. A voice, irritated, told us to get out of the way. Another told me to get control of my child.

I could not lift her. Even if I had the strength, I could not carry her across the park, find the exit, get to the car, keep track of my son.

My mind fractured.

Where is the exit? How far is the car? What if someone kidnaps my son? What if she runs? What if she falls? What if she seizes? Why did I bring them here?

In my mind, in that moment, I had failed both of them.

All of it running underneath a voice I forced to stay calm, steady, as I tried to keep her from further injuring herself.

Where is security? I need someone stronger. I need help! No one else could hear the deafening chaos that stayed contained inside my mind.

Time stretched and collapsed at once. I don’t know how long we were there.

Then a voice, close but not too close.

“Can we help?”

A woman. A man beside her. She introduced the man as her son and told me she has another son with autism. Not loudly. Not to center herself. Just enough for me to understand she saw what was happening.

Her son crouched down, bringing himself level with my daughter. Not over her. With her.

He told her his name and asked if he could help her.

She looked at him. “Doctor?”

He looked at me. I nodded.

“Yes,” he said. “Doctor. Can I help you?”

“Help. Please! Doctor.”

He lifted her. No hesitation. No spectacle.

I gathered our things with shaking hands. Took my son’s hand. Told him we were leaving. Promised I would explain later.

We left two days early. The disappointment and disbelief in the moment my son realized we were leaving was thicker than the sunscreen I had recently lathered on him.

He cried a heartbroken and visceral wailing the entire drive home. I cried too. But she was in the car. Kicking the seat. Hitting the window. But safe.

I will forever be grateful to that mom and her son who saved us that day.

Another day, a hospital bathroom. Fluorescent lights. Too bright. Too loud. The kind of echo that sharpens everything.

We had prepared for weeks. Multiple appointments stacked together. I had brought support with me, two Board Certified Behavior Analysts and two Registered Behavior Technicians. People trained for this. People who knew my daughter and knew how to respond when things escalated.

The stalls in the bathroom were full. Just as we had waited unexpectedly for our next appointment, which had been delayed, now we were waiting again.

Then we weren’t.

In the blink of an eye, a paper towel holder torn from the wall. Hands reaching, not random hands but trained ones, moving quickly to block, to redirect, to keep her from hurting herself or anyone else. Her screams filled the room, bounced off tile and metal, spilled into the hallway.

Women left quickly. Eyes wide.

I stood back because the safest thing I could do was not add another body into the equation. Because there were people there who knew what they were doing.

And still, it wasn’t enough to steady it.

The panic rose anyway. The scan for security. The calculation I could not stop.

She’s eighteen now. What happens if someone with guns or tasers misunderstands this?

A nurse stopped mid-stride. She turned toward me, just close enough that I could hear her voice.

She took in the scene in a single sweep.

She didn’t rush. She didn’t freeze.

“How can I help?”

I tried to answer, but all that I could produce were quick fragments. “Autism. Appointments. Delayed. They’re her providers. She’s not a threat. Please don’t call security.”

She changed the question. She kept her calm.

“I can call your next provider and get you a quiet room? I can check if your team needs anything? I can get a wheelchair? What would best help right now?”

Three options. Concrete. Contained.

Something my brain could hold.

She didn’t step over the people already doing the work. She didn’t assume control. She found the gap, and she filled it.

She called ahead. She stayed with us. Walked with us. Made it clear to anyone watching that this was understood.

We made it through the rest of the day because she stepped in and knew exactly how far to step.

A gym. Basketballs echoing on hardwood. Sneakers squeaking. Laughter filling the giant space.

My daughter had just finished practice at a disability basketball group. Sweaty. Smiling. That full, unguarded joy that makes everything else feel worth it.

We were leaving with a rare feeling of success.

As we left the basketball court, we passed a man in uniform filling a vending machine.

I don’t carry cash.

We tried to redirect. Offered alternatives. Promised food.

Too late.

The shift was immediate.

My daughter’s body tightened, then released into aggression. Fast. Uncontained.

One staff member went to get the car. The other stayed with me. We moved in, trying to console, to block, to keep her from hurting herself or anyone else.

People slowed. Watched. Then moved on.

All but one.

A woman approached.

“Can I help?”

“We’re okay,” we told her. “We’ve got it.”

She nodded.

“How about I stay over here? Let me know if you change your mind.”

She positioned herself just far enough away not to crowd us. Close enough to matter.

Two security guards started toward us.

She stepped forward before they reached us. Spoke quietly. They stopped. Listened. Turned away.

She returned to her place. Still there. Holding the edges.

The car came. The wheelchair. We got her in. Got her out. Got home.

No escalation. No police. No hospital.

Just home.

Before we left, she came to my driver’s window. “You all okay now?” she asked.

We thanked her.

“Nonsense,” she said. “I didn’t do anything.”

But she had.

She held the line where we couldn’t.

Not everyone can help. And if you can’t, that’s ok, and the viral post applies. Keep moving. Give space. Don’t add weight to a moment that already has too much.

But some people can.

They pause. Not too close. Not too far.

They take in what is happening without turning it into something it isn’t.

A question, asked without pressure.

A presence that doesn’t crowd.

A willingness to follow, not lead.

They see the edges of the moment and hold them steady.

Most of these moments pass in a blur. Noise. Movement. Heat. The feeling of being watched and wanting to disappear.

But the ones where someone steps in, just enough, stay.

They settle differently.

The sharp edges soften. The panic loosens its grip. The path forward becomes visible again.

Not because everything changed.

Because someone, briefly, stood with us in it.

Share

Words are powerful instruments. Despite some gains over two decades of therapy, low tech, and high tech tools to help my daughter express herself, she is still classified as minimally verbal. Perhaps because I know how precious words are, it grieves me to see her tremble with rage, collapse into my arms sobbing, or bite her own hands when unable to express her wants, needs, or emotions.

In many circles, it is taboo to even admit to feeling sad during those moments. My sadness is often recast as disappointment in her rather than what it truly is: compassion for her struggle and the ache of knowing that my ability to ease it is finite (and insufficient).

The Jewish philosopher Hannah Arendt, who wrote about the moral dangers of thoughtless bureaucracy and the corruption of language, warned that when words become detached from truth, they stop describing reality and begin shaping it.

“The moment we no longer have a common language, and no longer regard the same things as true, all dialogue becomes useless, and with it, all action.”
— Hannah Arendt, The Human Condition

For families like mine, whose loved ones live with the most severe forms of autism, this distortion is not merely an academic exercise; it’s a lived reality. Policies, funding, and even compassion are filtered through slogans that sound kind but conceal exclusion. Here are seven myths that grow out of this linguistic inversion and the truths that can remedy them.

1. Myth: Talking about suffering is dehumaninzing.
Reality: Silence is far more dehumanizing. Describing medical crises, self-injury, or whole family trauma is not cruelty; it is honesty. Families who live these realities tell the truth authentically because they love, not because they blame their children. Pretending that pain does not exist denies the humanity of those who endure it.

2. Myth: Families like mine only talk about hardship.
Reality: Joy is as present in our homes as struggle. My daughter dances in the kitchen as if she had a Broadway audience. She lights up like it’s Christmas morning every time the Amazon truck arrives, and she proudly says, “No! I do it,” when she masters something new. These moments of delight sustain us. We celebrate what others may overlook because every milestone demands extraordinary effort, yet even our joy is sometimes judged. If a parent celebrates their 16-year-old counting to five, they’re accused of “infantilizing” them. Celebration does not diminish dignity; it honors it. Celebration cannot erase suffering, though. The two co-exist in our homes.

3. Myth: Inclusion means belonging.
Reality: Inclusion without support becomes abandonment in disguise. The concept of “inclusion” may comfort the public, but often isolates those who are rejected from “inclusive” settings for being “too severe.” True inclusion requires resources, planning, and respect for all levels of disability, not photo-ops or feel-good marketing campaigns.

4. Myth: Deinstitutionalization ended segregation.
Reality: Many large facilities closed, yet new walls rose in smaller forms—isolated homes labeled “community-based” that hide neglect and abuse behind pleasant language protected by “acceptable” regulations. Freedom cannot be measured by the square footage of a residence. It must be measured by safety, attention, and opportunity.

5. Myth: Abelism is disagreeing with someone with disability.
Reality: Those with the most profound impairments, often those without functional communication to engage in discourse, face the deepest prejudice. Society still confuses intellect with worth and often avoids words such as “disability” altogether, replacing them with euphemisms that comfort the speaker rather than serve the person. This may be the preference for some people with disabilities, while also being dismissive of others with disabilities. Equality requires clarity and respect for the individual. Ableism is the discrimination against someone with disabilities, which includes denying their lived reality and personalized needs.

6. Myth: Parents exaggerate the challenges to gain sympathy.
Reality: Most parents downplay the challenges because, frankly, society is not ready for the realities that families endure. We describe what happens when crisis teams never come, when programs reject or discharge our children for being “too severe,” and when systems collapse under their own contradictions. This is documentation, not drama. Accurate description is the foundation of reform. How can we mend what we fail to acknowledge?

7. Myth: Families stand in the way of autonomy.
Reality: Families often make autonomy possible. We coordinate medications, manage care plans, and keep loved ones alive when systems fail. Dependency does not negate dignity; it reveals our shared human interdependence. Some “restrictions,” such as coded-locks to prevent elopement, are necessary accommodations to enhance freedom and access. Without them, our children would be confined to much more restrictive settings and unable to remain in the comfort of their family home. The stakes of total restriction are highest for families like mine.

Subscribe now

These myths persist because the language surrounding disability has drifted away from precision and accountability. Words that once named realities now perform morality.

As Arendt observed, when public life abandons careful thought, language begins to conceal rather than reveal. The casualties are not reputations; they are human beings.

I see the consequences each time a family is told that a program cannot handle their child, each time a caregiver loses services because a policy values optics over outcomes, and each time the word “community” is used to describe rejection. These are not rare anecdotes; they are predictable results of rhetoric untethered from truth.

The good news is that language can be reclaimed. Honest words create honest policy. If inclusion is to mean anything, it must begin where comfort ends. If justice is to hold, it must start with those who cannot advocate for themselves. If equity is to be more than theory, it must include the disparate realities that can make appropriate care possible.

Language created the distance between appearance and reality; language can close it. If we speak with honesty, lead with compassion, and refuse to trade truths for slogans, we can create a society that does more than proclaims acceptance—it understands. That is how we move from rhetoric to justice, and from justice to equity, and from equity to belonging.

“Fitting in is about assessing a situation and becoming who you need to be to be accepted. Belonging, on the other hand, doesn’t require us to change who we are; it requires us to be who we are.”
— Brené Brown

8 in 10 of families like mine have children who were told they were “too severe” to be “accepted” for supports or services. Families like mine don’t oppose “acceptance,” but we do oppose using the term as if we’ve arrived at its shores as a society. Those who claim authority of the advocacy megaphone should say what they mean and mean what they say. Otherwise, the word “advocacy” also risks inversion and becoming the discrimination it claims to remedy.

Share

Mine read: “the right to privacy.”

I had drawn the uniquely unlucky word in the cup that appears nowhere in the text of the U.S. Constitution, the Bill of Rights, or any Constitutional amendment. After a begrudging start, the paper I presented at the end of the semester condensed multiple binders I’d stuffed to the brim with case law. That assignment markedly changed me. Turns out that class and teacher weren’t so ordinary after all. The rights most essential to human dignity are often the ones most fragile, those that exist in the quiet implicit spaces between irrefutable Constitutional rights and eloquent judicial opinions and, perhaps most importantly, the willingness of Americans to defend them.

Three decades later, I find myself returning to that lesson. Recent decisions by the Supreme Court have underscored the fragility of stare decisis and reminded us that Congress bears a duty to codify federal rights that should be universal for all. “Life, liberty, and the pursuit of happiness…” Life, the first and foremost unalienable right declared in our Declaration of Independence. So why then, as my daughter’s conservator, depending on which state we lived, would I have the right to withdraw life-sustaining care but not to consent to life-saving care? This is a story about a fractured state-by-state landscape that fuels discrimination, a kind that carries a fatal cost, hidden in the seemingly “protective” language of state statutes on health care and legal guardianship.

Subscribe now

By the time anyone called it catatonia, my daughter had already vanished in pieces—her language fading, body slowing, eyes blank, and rage relentless. I was no stranger to seizures, even over 100 per hour when she was younger. I understood the chaos of Lennox–Gastaut Syndrome well, but this was different. Something deeper was happening. What specialists first believed to be a new seizure manifestation, typical adolescent behavioral regression, or “just autism” was, in fact, catatonia.

For nearly two years, she passed through 16 different specialists, all lovely, all brilliant, all missed it. By the time a psychiatrist properly diagnosed catatonia, her vitals were spiky, nailbeds intermittently blue, and random rashes appeared on her body. She would scratch gouges into her arms, screaming, “itchy!”. She had pupillary hippus and was put on nutrition support because she had all but stopped eating, drinking, or sleeping. I didn’t know then she had crossed into malignant catatonia, a form demanding urgent intervention (Gopal et al., 2024), nor did I have a clue how close I came to losing her. Looking back, perhaps that was a blessing. I wonder if I had known the fatality risk, if that would have been the tipping point of my already slipping grip on the ability to continue coping with the daily trauma.

Catatonia in Autism and ECT

Catatonia is a complex neuropsychiatric syndrome characterized by a cluster of psychomotor disturbances. Importantly, it exists on a spectrum from hypoactive states (such as stupor and mutism)—the only kind I knew of before—to hyperactive presentations (agitation, stereotypy, impulsivity)—the kind my daughter had. It can rapidly become life-threatening if not diagnosed and treated early (Park et al., 2017).

Individuals with autism spectrum disorder (ASD) and intellectual disability (ID) exhibit a much higher prevalence of catatonia than the general population, a fact substantiated by recent systematic reviews. Meta-analytic data indicate that approximately 20% of autistic individuals display catatonic features, and 10% meet full diagnostic criteria, far surpassing earlier clinical assumptions (Smith et al., 2024a). Catatonia in these populations often presents with symptoms such as a sudden onset of severe behavioral dysregulation, which, without prompt and appropriate intervention, can become fatal, particularly when malignant catatonia develops and is compounded by autonomic instability (Karl et al., 2022).

Across three decades, clinical evidence has accumulated to support electroconvulsive therapy (ECT) as both safe and highly effective for catatonia, including severe and life-threatening (malignant) presentations, where traditional pharmacological treatments frequently fail or are insufficient (Wachtel et al., 2024). ECT is not only well tolerated in individuals with ASD and ID, but often rapidly reverses catatonic states, mitigates self-injury, and restores basic functioning, even in cases unresponsive to maximal doses of benzodiazepines or alternative therapies (Louie et al., 2024). The efficacy of ECT in neurodiverse populations, including those with ASD and ID, is well established, supporting its role not simply as “rescue” therapy but as a lifesaving standard of care in severe cases (Rogers et al., 2023). Critically, delays in initiating ECT, whether due to diagnostic overshadowing, legal obstacles, or discriminatory statutes targeting conservator consent, directly place these patients at heightened risk of irreversible harm or death (Smith et al., 2024b).

My daughter has been receiving ECT treatment since 2023, now at a maintenance schedule of every two weeks, and other than a headache once, she has had zero side effects, only improvement. Her language has bloomed. She is brighter, more focused. Her physical health has improved, and we no longer must see any of the former 16 specialists. It has saved her life.

The Patchwork of Discriminatory Barriers

Despite what science and common sense should dictate, access to ECT in the United States does not depend on medical need. It depends on your zip code and the quirks of state law. In a handful of states, a conservator or guardian may authorize ECT for the person conserved, provided basic safeguards are met. In others, families are forced through a gauntlet of court orders, paperwork, committee hearings, and session limits—a process so convoluted that many give up or are forced across state lines to access care.

These restrictions fall most heavily on those with the most severe disabilities, individuals who have already undergone the rigorous judicial process of being adjudicated as incapacitated and assigned a conservator. Paradoxically, the very people most in need of timely, lifesaving care are subjected to the greatest procedural obstacles. Instead of empowering the conservators and physicians who know the patient best, these laws often transfer decision-making authority to administrative courts or unelected committees with no intimate knowledge of the individual’s needs or history.

Why? Not because ECT is especially dangerous. The evidence is clear: for catatonia in patients with neurodevelopmental disorders, ECT is as safe as (or safer than) many treatments that courts allow conservators to approve without further intervention. The barriers are rooted in historical stigma and institutional inertia, not in science.

From a constitutional perspective, these laws are equally suspect. The Supreme Court has consistently held that state policies affecting individuals with disabilities must be rational, individualized, and free from arbitrary or prejudicial distinctions (Heller v. Doe by Doe, 509 U.S. 312, 321–22 (1993); City of Cleburne v. Cleburne Living Center, 473 U.S. 432, 446–50 (1985)). Treatment decisions should be guided by the expertise of physicians and guardians, not by bureaucratic delay or the unfamiliar judgment of courts and committees (Youngberg v. Romeo, 457 U.S. 307, 321–23 (1982); O’Connor v. Donaldson, 422 U.S. 563, 575–76 (1975)). Only truly extraordinary interventions—ones such as the permanent withdrawal of care—warrant the kind of heightened scrutiny some states arbitrarily force onto ECT and conservators (Cruzan v. Director, Missouri Dept. of Health, 497 U.S. 261, 281 (1990); Conservatorship of Wendland, 26 Cal.4th 519, 554 (2001)).

A Need for Federal Leadership

The result is not merely inefficiency. It is a two-tiered system where the right to recover depends less on the advice of doctors and loved ones than on luck of geography and ability to self-advocate. It perpetuates discrimination against people with the most profound needs, and as I too nearly learned the hard way, sometimes it comes down to life or death.

Congress not only has the constitutional authority to fix this fractured system but the moral obligation as well. We need codified federal guarantees to fair, medically-driven access to life-saving interventions guided by science not stigma.

My daughter’s recovery was not a miracle. It was the outcome of a proven medical intervention, unlocked only by a twist of luck. Every month, I meet families whose children languish—some whose children did not survive—because their state’s laws prioritize fear, stigma, or administrative convenience over evidence and dignity. The right to recover should not be a privilege reserved for those in the “right” state or those with the ability to self-advocate.

In effect, current access barriers reflect an outdated stigma rather than medical evidence or consensus, representing clear discrimination that is out of step with the scientific literature and modern standards of care (Wachtel et al., 2024). This is a call for federal leadership and a reminder that in the quiet spaces between the lines of our laws, human dignity waits to be seen, defended, and protected. We need a federal law eliminating state-imposed obstacles that risk violating our most fundamental unalienable right to life for our most vulnerable.

Share

This past week, a public controversy broke out after The Arc of the United States coordinated national press coverage, carefully curating family and autistic voices to fit its preferred narrative. For families providing round-the-clock care for children and adults with severe forms of autism, the reaction was immediate and visceral. Many of us were left asking: Whose autism are you talking about? Whose story is being told, and whose is being erased?

I know this essay is longer than usual, but I urge you to stay with me. The outcry from families has made it impossible to ignore: it is time to show the public exactly what is happening behind the curtain of “disability justice” in America.

Orchestrated Narratives

The Arc claims in its core values statement: “The Arc works with and for ALL people with IDD.” (The “ALL” capitalized is how it is written in their values.) Nevertheless, it drove a message that intentionally excluded those with the most debilitating forms of autism, pushing a politically convenient claim that autism is simply “a different way of being.”

In its own words:

“The headlines have been loud this week about autism “causes” and “cures.” But for people with autism and their families, the real story is dignity, support, and truth. We’ve been working hard to make sure their perspectives are at the center of national coverage.”

“Truth”? Whose truth? Only those whose stories fit neatly within The Arc’s script were elevated. That campaign against research into causes and treatments felt like a campaign against the families who have begged for answers for decades. They responded in kind, with fury.

The Washington Post and USA Today, too, earned the hot condemnation they are receiving from families affected by severe forms of autism. Instead of balanced reporting, they served as marionettes to The Arc’s choreography. Families and individuals with autism were used as proxies in a political war they likely never realized they had been conscripted to fight. The voices they spotlighted are not to blame. They are valid and brave, but they were strategically selected to deliver the Arc’s “acceptable” version of autism while silencing the rest. The families shared their truth about autism spectrum disorder, which current science continues to reveal is not simply autism but autisms.

“We consulted clinical collaborators on the interpretability of multiple candidate models and found that the four-class solution offered the best phenotypic separation and most clinically relevant classes” (Litman et. al., Nature Genetics, 2025).

“An emerging view on the pluralisation of autism - ‘the autisms’ - based on different severity levels and different developmental trajectories is gaining popularity, bolstered by the introduction of the grouping ‘profound autism’ and observations of non-persistence of autism for some” (Whiteley et. al., The British Journal of Psychiatry, 2025).

Disorder, Not Disease

One clarification is needed. Some headlines latched onto HHS Secretary RFK Jr.’s careless use of the term “disease.” Autism is not a disease, but not for the reasons advocacy groups claim. A disease requires an identifiable cause. Research now points to multiple causes and trajectories, not a single autism, not a single cause. This is why autism remains, as it most likely always will remain, classified as a neurodevelopmental disorder.

Instead of helping the public understand these nuances, the coordinated media blitz distorted them, deliberately playing on fear and confusion. To call that advocacy is an abomination of the word.

Even more harmful was the false equivalence drawn between “disease” and “contagion.” The chant “You can’t catch autism” may be factually correct, but it weaponizes stigma against people with other lifelong conditions, from HIV to congenital heart disease. This reeks of disability hierarchy in action, a ranking within the disability community of which conditions are considered more respectable or favorable and which are not. It also conflates disease and pathogens. There is a difference.

Doublethink Modernity

Being the biggest or the loudest doesn’t make you right. Sometimes it just makes you the bully.

A recent study illustrates how deep these distortions go (Friedman, VanPuymbrouck & Gordon, Journal of Applied Research in Intellectual Disabilities, 2024). Researchers asked 347 disability professionals to define ableism. Most claimed familiarity, but fewer than half could do so accurately. Many reinforced stereotypes, individualized disability as mere “in/ability,” or even denied that ableism exists.

Most strikingly, the study revealed a hierarchy of disability. Physical disabilities were more likely to be described sympathetically, while intellectual and developmental disabilities were stigmatized or ignored. Euphemisms like “differently abled” replaced the word “disability,” as if too shameful to name. Invisible disabilities were dismissed entirely.

These professionals are not neutral bystanders; they are gatekeepers of services, the “experts” who shape policy and public opinion. If even they misunderstand ableism, they will reinforce it rather than dismantle it. Families then are told their barriers are personal failings, not systemic exclusions. They are handed slogans instead of solutions, pity instead of policy.

This is exactly what we see in national advocacy: organizations curating narratives that erase severe forms of autism while claiming to represent “all.” Those with power misrepresent reality. The most vulnerable, and their families, pay the price.

To be fair to the Arc, though they wield enormous power to control the direction of disability perception and policy, it is not solely to blame. This is a systemic issue across most of the disability justice network, from the most prestigious lecture halls of academia to the federally funded DD Network. See my prior essay here for more on that.

Justice and Representation

The philosopher John Rawls argued that a just society is measured by how it treats its most disadvantaged members (A Theory of Justice, 1971). By that measure, autism advocacy that centers only the most palatable forms of autism fails its own moral test.

Families of children with severe autism know this well. Their testimonies are often dismissed as “deficit-based” or “ableist” because they don’t align with the preferred narrative. Philosopher Miranda Fricker calls this epistemic injustice, silencing the knowledge of those whose lived realities are too inconvenient to acknowledge (Epistemic Injustice: Power and the Ethics of Knowing, 2007). Ignoring those voices doesn’t make their suffering disappear; it compounds their exclusion.

History warns us of the dangers. The Magdalene Laundries in Ireland were celebrated as havens of mercy, but they silenced and exploited women. In the U.S. and Canada, so-called Indian boarding schools claimed to educate, but instead stripped Indigenous children of family and culture, forcing assimilation, and resulted in sexual abuse or death of the children. (The similarity between that heinous stain on our history and the blind eye we turn to the horrors that still occur today in the atomized institutionalization of “home and community” living is for another day.) In the early 1900s, settlement houses for immigrants were praised as progressive, even as many of their leaders pushed sterilization laws against the very immigrants they claimed to uplift. Again and again, benevolence cloaked exclusion. Today, groups like the Arc risk repeating that pattern, cloaking abandonment of the most vulnerable in the doublethink language of “inclusion” and “acceptance.”

Just as history shows us the danger of benevolence masking harm, today’s debate reveals the danger of rhetoric masking reality. Some insist autism is disabling only because of stigma or lack of accommodations. It’s a tempting idea: that all suffering could vanish if society simply welcomed difference, yet for families in crisis, this is not only untrue; it is a profound betrayal.

The Limits of Accommodation

Some advocates counter that disability is only disabling because of social barriers. Eliminate stigma, expand supports, make schools inclusive, and autism need not be a problem.

There is some truth here. Society has failed many families through inaccessibility, rejection, and prejudice, but to pretend that every hardship can be accommodated away is not only naive, it can have deadly consequences by failing to inform the public of the life-threatening risks that accompany severe forms of autism at alarming rates in comparison to the general population.

When a child seizes daily, or bolts into traffic, or smashes windows and tries to eat the glass, no amount of awareness training or classroom inclusion removes the risk. Accommodations matter, but they cannot stop a seizure, eliminate drownings, or eradicate symptoms like serious self-harm and aggression. For many, medical stabilization is the precondition for supports to even be possible.

The Myth of the “Mom Who Never Gave Up”

Indeed, some families with even the most severe forms of autism have found appropriate care for their child, such as at The Center for Discovery in New York. Others, myself included, pushed so fiercely that some minor elements of the system were improved, such as when we had Emergency Stabilization Protocols for IDD adopted. This can lead to the false perception that if parents just “never give up” or “look harder,” their children would have services. Even if they could make advocacy their full-time job, though, it often wouldn’t matter. Because Medicaid is administered state by state, geography determines more than persistence ever will. In some states, some modicum of appropriate support for individuals with severe forms of autism exists. In others, it simply doesn’t. This becomes especially prevalent at the age of 22 when the individual with severe autism is no longer under the federal protections of the Individuals with Disabilities Education Act (IDEA) or Early and Periodic Screening, Diagnostic, and Treatment (EPSDT).

That’s why the “feel-good” stories about mothers who never gave up ring so hollow. They are not tales of justice. They are propaganda that continues the cruel tradition of blaming parents. Once, it was the “refrigerator mother” theory. Today, it’s the insinuation that if you just tried harder, adopted the right mindset, or stopped seeing your child’s disability as a deficit, you too could have a child that just has “a different way of being.” But systems matter more than slogans, and geography matters more than grit.

A Call for Honesty

The autism spectrum is broad, but our advocacy cannot stop at the edges where the stories are easiest to tell. True inclusion means facing the full reality, even when it is uncomfortable.

Families of those with severe forms of autism are not asking for pity. We are asking for honesty. We are asking for a legitimate justice that prioritizes the most vulnerable before curating the most marketable narrative. We are asking for politics to be kept out of it because our children don’t even know what a political party is. We are asking for a seat at the table, not for ourselves, but as proxies for our children, those with the greatest needs, the quietest voices, and the hardest lives.

If advocacy will not begin there, then it is not justice at all.

Share

I love my daughter with every fiber of my being. I love her wide grin that bursts forth with abandon, her laughter that bubbles up without reason, her tender hands that stroke baby rabbits as though they were spun of glass. But I loathe the reality that she has no occupational therapy. On paper she qualifies, yet every agency has turned her away with the same verdict: “behaviors.”

I marvel as she speeds down the road on her ten-speed bicycle, shouting through laughter, “Me! Watch me! Faster, Mom, faster!” But I am dragged back to the sterile hospital room in the 2000s, where a sea of white coats pronounced her future: seizures, autism, a girl who would never walk or speak more than ten words.

I delight in her silly “knock knock” jokes, her joy needing no punchline apparently. But I ache that she cannot tell me if someone has harmed her, or even if her words are memory, scripting, or a cry for help.

I am profoundly grateful for the doctor who pulled her back from acquired malignant catatonia. But I dread the two-hour drives every other week, her fists sometimes pounding against the vehicle partition as I white-knuckle the steering wheel at seventy miles per hour, praying the partition holds.

I am filled with awe when she gathers eggs, her face alight with pride, a natural chicken whisperer. But I seethe when I remember she cannot sell them at the farmers market, because despite a waiver promising support, she has none.

I cherish every day with her, even the hardest. But I live with gnawing terror every night before I close my eyes: if I die in my sleep, how long until anyone finds her, alone in this house with her dead mother, unable to call for help, to make food, to order food, to survive? If she survives that, the types of placements that she’d be shuttered off to will haunt me from my grave.

I adore her compassion, her humor, her fierce spark. But I also remember the cafeteria emptied by her meltdowns, the tiled hallways ringing with her screams, the bathroom cleared of other girls so staff could change her urine-soaked clothes. Her older sister swears she was destined to be “hell on wheels” if she had been dealt a better hand, the star of every stage, the class president, the wild one surrounded by friends. I cannot help but agree.

I count myself fortunate to know the cause of her autism, a de novo mutation in her SynGAP gene. Knowing this has guided treatment and given us hope. But I burn with indignation when politically-motivated ideology smears causation research as “eugenics.”

I love my independence as a single woman, the freedom of my own life. But I mourn the marriage that ended, not from lack of love, but because crisis upon crisis from autism crushed what even love could not hold together.

I am thankful for this quiet rural life where my daughter can scream into the hills without neighbor complaint. But I grieve the dream home I sold to give her the farm, the space, the daily rhythms she deserved.

I am proud of all my children. But I ache with my oldest over the ordinary sisterhood she feels was stolen from her, and for the all-star brother who lost a cheering mother in the stands because his sister could not tolerate the crowds.

Subscribe now

I am grateful for friends and family who tell me I am a good mother on the days I most doubt myself. But I carry the enduring guilt of knowing my other two children received only fragments of me, because their sister could never be left without me.

Autism, like epilepsy, gastrointestinal distress, immune fragility, and catatonia is not her superpower. It is her disability. It has shackled her dreams, including her deepest: to become a doctor, like the kind heroes who saved her life. And I know she would have been an extraordinary one.

I feel no shame or guilt that my daughter has autism. What I feel is fury at the multimillion-dollar campaigns that dress suffering as a gift, that promise genius if only the mom “never gives up,” that sell the fantasy of transformation, while in the same breath preaching acceptance as one is. I have not given up. She still has autism. She always will. That’s not my fault. It’s not because of something I did or didn’t do. It just is.

What we need is not more patronizing, but a system that will not deny her services because of “behaviors” that are involuntary symptoms of her disability, that will not leave her without therapies she is entitled to, that will not pretend suffering is special abilities to celebrate. The gap between their rhetoric and our reality is the true crisis.

And yes, I know what will follow. There will be voices, indoctrinated by the tyranny lens of disability ideology, who will not see the nuance of these interdependent relationships. They will echo the predictable attacks, falsely accusing me of having a deficit-based mindset, of ableism, of denying her access to robust communication aids—none of which are true. They will dismiss what they cannot comprehend, but this is not written for them.

This is being written for the possibility that one person reading will look at severe forms of autism through a more authentic lens. That they will abandon the hollow mainstream narratives and join families like mine as allies. That they will fight for the better tomorrows our children have waited for far too long.

Autism does not define my daughter. It’s not her identity. It is her disorder. It diminishes the light that emanates from her core being, which she fights every day to shine despite autism. And the cruelest injustice of all is the mainstream narrative that dares to tell us otherwise.

Bonus Video:

This week, while “disability justice” groups (see my recent substack here for more on that) made noise about the White House mentioning Tylenol and Leucovorin, something much more important quietly happened: HHS announced 13 new autism research projects under the Autism Data Science Initiative (ADSI).

If you only read the advocacy press releases, you wouldn’t even know this news existed. That’s a problem, because these projects actually reflect the diverse priorities the autism community has been asking for over many years.

I think that should have been the bigger story.

Many Priorities Addressed

Different corners of the autism community have been battling over different research priorities for decades:

Families of children with severe forms of autism have warned that studies rarely include individuals with intellectual disability and other co-occurring disorders. They also pushed for research into chemical, epigenetic, and environmental exposures, not only genetics.

Parents of children with rare genetic syndromes asked for more gene discovery and deeper study of rare mutations.

Families with young children wanted more pediatric research.

Parents of adult children and many autistic adults themselves have asked for lifespan research, noting that only 4.3% of funding has gone toward it (IACC, 2020).

Autistic adults, especially those diagnosed later in life, have expressed frustration with the focus on causation and urged for studies on supports, accommodations, and outcomes instead.

This time, the portfolio of projects reflects all of these concerns.

Subscribe now

Research that Reflects the Entire Spectrum

These projects show that the federal government actually listened to voices across the entire spectrum:

Families of those with severe forms of autism will see research both correcting selection bias to include individuals with intellectual disability or co-occurring disorders and examining prenatal, dietary, and environmental factors alongside genetics.

Families calling for a both/and approach, recognizing the interplay of genes and environment, will see epigenetics research take center stage.

Families with rare genetic syndromes will benefit from deeper gene discovery.

Parents of young children will see pediatric-focused research.

Parents of adult children and autistic adults themselves, who have long called for both lifespan studies and research on supports and accommodations, will finally see data-driven projects focused on outcomes across health, education, employment, and daily life.

When Advocacy Groups Lose Their Way, Families Suffer the Consequences

Here’s the truth: families don’t need more political theater dressed up as advocacy. They don’t need press releases that attack one party while ignoring scientific headway. They need clear, factual information that helps them make the best decisions for their loved ones, and they need it without aggressive political spin.

As Frédéric Bastiat warned,

“Society loses the value of things which are uselessly destroyed.”

In his parable of the broken window, the “seen” is the activity created when a shopkeeper pays someone to fix the glass. On the surface, it looks like jobs and progress, but the “unseen” is what’s lost: the shopkeeper can’t spend that money on something new that would have added real value. The whole community loses, but the shopkeeper most of all.

When advocacy groups bury meaningful research under partisan talking points, it’s like breaking a window and calling it progress. The “seen” is the outrage cycle: statements that look bold, fundraising emails that sound urgent. Advocacy groups may benefit from crowdsourcing outrage, but families are the shopkeepers in this scenario—the ones who pay the real price. The “unseen” is what’s lost: trust, clarity, and the chance for families to learn about news that could directly shape their lives, or at minimum, offer them a modicum of hope.

The families within the autism community are politically diverse, but their needs are universal: better science, better supports, better futures. If advocacy groups truly care about autonomy, informed consent, and dignity, they need to start practicing what they preach and stop smashing windows in the name of “advocacy”.

When new science projects could plant seeds of hope for the autism community, the worst thing we can do is let them be buried under outrage. That’s just uselessly destroying hope.

And that should have been the headline.

Share

Yesterday, the White House held a press conference on autism. Officials didn’t pretend everything was fine. They called autism a “crisis” for many families and raised both research questions (acetaminophen & vaccines) and announced a new FDA approval for folinic acid (Leucovorin). Whatever you think of the science, the recognition that autism can bring crisis into families’ lives was overdue.

Almost immediately, though, federally funded advocacy organizations under the Developmental Disabilities Network (DD Network) flooded inboxes with mass statements rejecting the premise outright. The DD Network, which includes State Councils on Developmental Disabilities, Protection and Advocacy Systems, Centers for Independent Living, and more—receives nearly a half a billion dollars in federal funding each year. According to the Administration for Community Living (ACL), State Councils on Developmental Disabilities key activities include:

conducting outreach, providing training and technical assistance, removing barriers, developing coalitions, encouraging citizen participation, and keeping policymakers informed about disability issues.

So did they release statements describing the barriers families with severe forms of autism face? Did they inform policymakers about ways to address the issues that keep these families in perpetual states of indescribable crisis? Predictably, they did not.

Autism, they said, is not a crisis….talking about causes is blaming mothers….exploring treatments is eugenic…yada, yada, we are the moral superiors; autism is amazing; case closed; go yell at your elected officials.

I feel the energy drain out of my body when I read these statements again and again. In the official statement after the news conference yesterday by the Wisconsin Board of People with Developmental Disabilities (WI-BPDD):

Said Beth Swedeen, Wisconsin Board for People with Developmental Disabilities Executive Director: “This week, people with autism are being identified as population of people whose existence the government seeks to prevent or change into people who are more ‘normal’.”

“The government should not decide whose lives are worth living or what criteria must be met to have a worthy life,” said Sydney Badeau, Wisconsin Board for People with Developmental Disabilities Board Chair.

“I know many people with autism. They do not want to be cured. They don’t want to be targeted. They don’t want to be told it is ok, or better, if they don’t exist,” said Badeau. “People with autism have always existed. We are part of what humanity looks like, and we are amazing.”

It was all the same histrionic tone deaf rhetoric, used to silence the existence of families like mine, that we endured earlier this year when HHS Secretary RFK Jr dared to state that some people with autism might never write a poem.

This reaction isn’t new. It’s part of a pattern, and it serves as a case study in what philosopher Justin D’Ambrosio calls manipulative underspecification (Philosophical Review, 2025).

The Slippery Promise of “Justice”

Underspecification works like this: pick a word everyone nods at—“freedom,” “equity,” “justice”—but leave it vague enough that people project their own meaning onto it. This gains consensus by avoiding specificity.

“Disability justice” sounds like something no one would oppose. Who doesn’t want justice? But here’s the problem: in practice, much of the “disability justice” framework rests on benchmarks of integration, independence, productivity, and self-advocacy.

Those principles exclude the very people with the most profound disabilities:

• People who cannot self-advocate effectively.

• People who cannot live independently or work competitively.

• People discharged from programs for being “too severe.”

In short, those for whom autism really is a crisis.

Subscribe now

What Families Actually Report

This past weekend, during a town hall debriefing, I shared the results of a national survey of over 1200 caregivers of people with severe autism. The results are stark:

• 63% report a behavioral or psychiatric crisis requiring outside help.

• Only 14% said the crisis response was appropriate to disability needs.

• 79% have been told their child is “too severe” or “not a good fit” for services.

• 54% have been discharged from providers due to behaviors.

• Only 12% have a future care plan in place.

Meanwhile, more than two-thirds of caregivers who responded are aging parents between 45–64, and more than one in ten are caring for multiple individuals with severe forms of autism at once. Families are staring down the future with no map.

This isn’t rhetoric; it’s reality. It’s what happens when underspecified slogans like “justice” are allowed to substitute for honest policy.

Why the Backlash Matters

When advocacy organizations insist autism cannot be described as a crisis, they erase families living in it every day. When they shut down questions of causation, they foreclose research that could reduce suffering. When they equate treatment with extermination, they close off avenues of support for those in the hardest situations.

It’s a rhetorical sleight of hand: if you acknowledge crisis, you must think autistic lives have no value. If you search for causes in hopes of personalized treatments, you must be a eugenicist. That’s not logic. That’s manipulation.

…and our federal tax dollars fund it.

The Science Debate Matters

That’s why yesterday’s press conference, clumsy as it was, struck a nerve. Families already feel gaslit, unheard, dismissed. They’ve been told for years by experts, providers, and authorities that their experiences don’t fit the preferred narrative. Many no longer trust those institutions. So they google their way through PubMed and find themselves down internet dark holes, searching for answers the scientific establishment won’t discuss.

This is a sliding-doors moment. For scientists, it is not enough to say, “The president was wrong, the science is settled.” Families need more than a verdict. They need scientists who will listen empathetically, explain plainly, and point to what can still be studied.

Debates over the soundness of the science are necessary. They are how science earns trust. The refusal to engage is what drives families away. Our focus in this moment should not be on what party said what, but instead on how we regain the trust of families to reduce hesitancy following medical advice.

Toward a More Honest Justice

Justice should not be a slogan that papers over exclusion. If it is to mean anything, it must be specific and honest.

That means:

• Safety, dignity, access, and wellbeing as core policy goals.

• Recognizing dependence and interdependence as part of the human condition, not failures to be hidden.

• Ensuring that those who cannot self-advocate effectively are not left invisible but are at the very center of our concern.

Branding might fool members of Congress into allocating large sums of federal funds, but the ones left holding the greatest cost are the individuals with debilitating forms of disability ignored and silenced by the very programs funded to defend them.

Families don’t need slogans. They need safety, continuity of care, and dignity for their loved ones. They need policymakers willing to face uncomfortable truths, and they need a public conversation that can move past manipulative underspecification to real, honest justice.

Share

Yesterday’s comments from the White House have stirred deep feelings.

Some parents feel shaken and frightened. Some just shake with ire.

Others, especially families living every day with severe forms of autism, feel something different: seen.

For years, many have felt that the enormous challenges of severe autism—medical crises, sleepless nights, self-injury, aggression—are buried and silenced. For them, a national leader even mentioning autism feels like long-overdue attention.

All these reactions are valid.

To those feeling anxious about medical decisions

Your worry matters. When authority figures suddenly warn of something common and often recommended, wanting clear, evidence-based guidance for a healthy pregnancy and healthy children is natural and right.

We like neat little equations like 2+2=4. We say things like “trust the science”: simple enough, right? One friend may post about the Harvard study, and then another snaps back with the Sweden study, and that understandably feels confusing and overwhelming.

What feels safe is often nuanced. That hasn’t changed. Your medical decisions should be individualized. Talk with your care team (OB-GYN, midwife, family doctor) to help weigh risks and benefits of your situation. Ask people in your care team that you trust to help explain the current science to you. Most providers hold a deep reverence for the ethics of informed consent. That means they should be glad to sit with you to ensure you have all your questions answered and are comfortable proceeding with the advice you’re provided.

To families frustrated by the politics in science

You are not alone in feeling weary or even angry that careful science seems to be caught in a tug-of-war.

It can feel as if the painstaking work of researchers—built on years of data, peer review, and repetition—is suddenly reduced to a sound bite or a political weapon. That frustration is understandable, too.

A few thoughts to help steady the conversation:

• Remember the long game. Science is designed to outlast election cycles. Peer review, replication, and global consensus move slowly on purpose, so that momentary noise does not rewrite what we know.

• Stay anchored in trusted sources. Professional medical societies, public health agencies, and peer-reviewed journals will continue to assess the evidence, separate from political headlines.

• Channel the energy. Your passion for protecting good science can fuel advocacy: supporting research funding, calling for better communication between scientists and the public, or mentoring others in how to read studies critically.

• Listen and learn. Study the responses from the public, especially those who distrust experts or scientists now. Consider what can be done in future work to gain back the trust of that part of the public.

Your frustration is a sign that you care deeply about truth and the health of families. That care is an asset. Let’s use it to strengthen, not fracture, the community.

To families who finally feel heard

Your relief matters, too. The day-to-day reality of caring for someone with complex, often imperceptible needs is hard to convey. When a public figure acknowledges the gravity of severe autism, it can feel like someone is finally naming what you live every day. That longing to be recognized is not only understandable, it is profoundly human.

For years many of you have fought for basic visibility, filling out endless forms, navigating services that never quite fit, being excluded and turned away from “disability” programs, explaining again and again why your child’s needs don’t match the standard autism story. When someone in national leadership uses the word autism in a way that captures the severity you experience—even the word crisis— it can feel like a long-closed door has finally cracked open.

It’s natural to feel protective of that moment. You may worry that, once the news cycle moves on, the spotlight will fade and the hardest realities like catatonia, aggression, self-injury, and medical complexity, will once again be pushed to the margins. That hope for lasting attention is not naive; it’s a testament to how fiercely you advocate for your loved ones.

So let yourself hold both truths: gratitude that your experience is finally being acknowledged and determination to keep the conversation focused on meaningful change long after the headlines pass. Your story and your persistence are powerful, and they can help guide what real progress looks like.

Subscribe now

Turning strong feelings into meaningful action

No matter which reaction you relate to, you can use this moment to drive real change:

1. Identify what matters most.
   Make a short list: What research, services, or supports would truly help families like mine? (For example: better housing options, more trained caregivers, or targeted medical research.)

2. Meet your legislators, respectfully and clearly.
   Whether you live in a small town or a big city, your local, state, and federal representatives need to hear from you.

   • Share your family’s story in a few sentences. Include a photo of your family.

   • Bring a one-page summary of your specific, concise requests.

   • Keep the conversation focused and nonpartisan.

Examples of clear, concrete asks

• Investigate and optimize housing regulations that limit residential options for people with severe autism.

• Strengthen the direct workforce through better pay, training, and career pathways.

• Fund specific research priorities—for example:

  • Catatonia

  • Aggression and self-injury

  • Innovative technology to improve safety, communication, and quality of life

• Reform housing policies to expand safe, individualized living choices for families across income levels.

• Fund causation research to help guide future personalized treatments.

Our common ground

We all want:

• Healthier pregnancies and children

• Better support and dignity for people with autism

• Research that provides real answers and practical solutions

If we stay focused on these shared goals and turn today’s heated headlines into thoughtful advocacy, we can move from division toward progress, together.

Your experience matters. Your questions matter. Your commitment to truth and to your loved ones matters. Let’s listen to one another, let science guide us even while we challenge science, and channel our passion into action that creates lasting positive change for our families.

Causation ≠ Blame

At the first hint that the White House might identify Tylenol (acetaminophen) as a cause of autism, the internet erupted in righteous indignation about “blaming women and mothers.” That familiar rallying cry leapt over the essential point: investigating causation is not about assigning guilt. It is about finding the knowledge that guides better treatments and services.

I Have Answers, Not Guilt

I know my daughter’s cause of autism. She carries a de novo genetic mutation: a cytosine switched with a thymine on her SynGAP gene, thirteenth exon, sixth chromosome. That single change shaped her life, but it took us 16 years to uncover. Recognizing this cause did not assign blame; it provided clarity. It guided medical decisions, informed treatment planning, and connected us with research specific to SynGAP-related autism.

We were provided a lot of incorrect hypotheses, a lot inconclusive tests, and occasionally even harmful advice on our long diagnostic odyssey. We met a cornucopia of passionate, remarkable specialists along the way. Though they rarely had more to offer us than resigned defeat and encouragement to hope for advancements in medical science, I always felt gratitude for their time and attention.

Before we understood her biology, my daughter was prescribed haldol for aggression. For individuals with autism and severe behaviors, haldol—or some version of antipsychotic medication—is not an unusual prescription. In her case, with overactive synapses caused by reduced SynGAP protein, haldol was like pouring lighter fluid on a fire. Today, with medications that consider her limited SynGAP production and specialized ECT precisely calibrated to her needs, she experiences no side effects. She now enjoys longer periods of stability and connection. That transformation came not from guesswork, but from cause-based treatment.

Subscribe now

Can I Bother You For A Kleenex?

A runny nose illustrates the principle. The symptom could signal allergies calling for over-the-counter antihistamines; Covid and a multi-day scrollfest in bed resting; a bacterial infection requiring an antibiotic prescription; or a cerebrospinal fluid leak requiring emergency neurosurgery. Treating all runny noses with Zyrtec would be absurd. The right treatment depends on the cause. Autism is no different.

The Blame Instinct

Our culture is thirsty to assign blame. Mothers, women, genes, neighborhoods, doctors, politicians, parties, industries—someone must be held responsible. Yet causation is not about blame. It is about clarity. The instinct to assign fault reflects a broader societal pattern: confusing moral judgment with problem-solving.

As Ezra Klein recently observed:

“A lot of the people who embrace alarm don't embrace what I think obviously follows from that alarm, which is the willingness to make strategic and political decisions you find personally discomforting. … One of my biggest frustrations is the unwillingness to match the seriousness of your politics to the seriousness of your alarm.”

The parallel is striking. In autism, people express alarm at rising prevalence, and it’s quickly met with blaring panic alarms about eugenics to squash any debate on causation.

When science points toward causes—whether genetic, epigenetic, or environmental—the conversation is derailed by more cognitive acrobatics with predictable landings in misplaced accusations of blame. The alarm is real, but the willingness to tolerate discomfort in pursuit of answers is absent.

Current discourse about the White House announcement illustrates the problem. The “how dare they” public reaction from all sides lacked any situational awareness. The reflex to assume blame shows how quickly causation gets tangled in stigma.

Science Over Stigma

Causation research is not about blame. It is about clarity, precision, and improved quality of life for individuals with severe forms of autism. Understanding causes guides interventions, prevents harmful missteps, avoids unnecessary trauma, and reduces wasted years on trial-and-error approaches. Families deserve evidence-based autism science, not distractions rooted in misplaced blame. The blame game adds noise when what is needed is focus. Progress depends on leaving it behind.

This is why we can’t have nice things

…or for families sitting on empty waivers while in the depths of crisis—anything at all. No effective medications. No staffing. No treatment. No services. No appropriate housing options. No answers.

How can we get to the right answers—or the many answers to the many causes of the many forms of autism that will require many personalized solutions—if we signal to researchers and policymakers that they’ll be met with public outrage?

We are far too far from having it all figured out to be suppressing attempts for additional discovery. Don’t let perfect be the enemy of good.

Is that what happened, though?

Subscribe now

The Timeline

Mon. 9/15

On his late night show, Jimmy Kimmel, during his opening monologue, stated:

“The MAGA Gang desperately trying to characterize this kid who murdered Charlie Kirk as anything other than one of them and doing everything they can to score political points from it. In between the finger-pointing, there was grieving.”

He then aired a clip of President Trump being asked how he was holding up after the death of his friend Charlie Kirk, to which the President talked about ballroom construction at the White House—prodding at the authenticity of the president’s grief.

Weds. 9/17 (Day)

On a podcast with Benny Johnson, FCC Chair Brendan Carr said:

“We can do this the easy way or the hard way. These companies can find ways to take action on Kimmel, or there is going to be additional work for the FCC ahead.”

When Benny Johnson follows up, stating he would like to see an apology from Kimmel, asking Carr what he would like to see done at ABC, the Chair of the FCC (a position appointed by the President) responded:

“There’s calls for Kimmel to be fired. I think you could certainly see a path forward for suspension over this. Again, the FCC is going to have remedies we can look at. We may ultimately be called to be a judge on that….hold it in the public interest standard. That’s what we’re going to have to do.”

Carr also warned that ABC and its parent company Disney could face fines or even lose broadcast licenses.

Weds. 9/17 (Later that Day)

ABC announced the “Jimmy Kimmel Live!” show was being pulled off the air indefinitely. In Nextstar’s statement:

“Continuing to give Mr. Kimmel a broadcast platform in the communities we serve is simply not in the public interest at the current time, and we have made the difficult decision to preempt his show in an effort to let cooler heads prevail as we move toward the resumption of respectful, constructive dialogue.”

Thurs. 9/18

President Trump stated:

“I read someplace that the networks were 97% against me, 97% negative…They give me only bad publicity or press. I mean, they’re getting a license, I would think maybe their license should be taken away. That’ll be up to Brendan Carr.”

Sat. 9/20

White House press secretary Karoline Leavitt denied that the president had any interference in the decision to pull Kimmel’s show. She claimed to be the one to break the news to the president after it happened. She told Kayleigh McEnany on Fox News “Saturday in America”:

“It was a decision that was made by ABC because Jimmy Kimmel chose to knowingly lie to his audience on his program about the death of a highly respected man when our country is in a state of mourning.”

So what do you think?

Is the federal government censoring speech that paints the president or his party in a negative light? Some of my friends are certain of it, while others are irate at the mere notion of it being presented. This isn’t a left or right issue, though. Even Senator Ted Cruz, no admirer of Kimmel, called Carr’s threat “dangerous as hell,” warning that when government starts threatening speech it dislikes, “we will regret it.”

I think it’s worth a discussion…

Subscribe now

Why This Strikes Me So Deeply

My belief in the First Amendment formed in the messiness of real life.

I work in a field where strangers often exercise their freedom to say the most vile or untrue things about me. The words hurt, but silencing them would cost everyone something greater.

I spent much of my adult life married to a man who carried shrapnel and haunting nightmares for decades after being wounded in service to this country. He fought for the right of people to speak freely, even when their words offended.

Of all the books I read last year, my favorite was Thomas Healy’s The Great Dissent, a riveting account of how Justice Oliver Wendell Holmes changed his mind and laid the groundwork for modern free-speech law. Holmes wrote in 1919:

“The ultimate good desired is better reached by free trade in ideas—that the best test of truth is the power of the thought to get itself accepted in the competition of the market… we should be eternally vigilant against attempts to check the expression of opinions that we loathe and believe to be fraught with death.”

Where do I stand? I’m with Holmes

Arguments used to defend Kimmel’s suspension collapse under scrutiny.

Some equate distasteful political commentary with true threats or incitement. That false equivalence ignores that the government has no authority to punish or threaten protected speech.

Others claim ABC acted on its own. This causal fallacy overlooks that when the FCC chair issues warnings and the president muses about pulling licenses, the decision occurs under duress. Courts hold that even indirect government pressure violates the First Amendment.

Some say Kimmel spread harmful misinformation and had to be silenced. That appeal to consequence assumes officials may act as arbiters of truth. The Constitution requires bad speech to be met with correction and debate, not censorship.

Another argument points to past government pressure on social-media companies to dismiss today’s concerns. This tu quoque fallacy treats prior misconduct as a license for current abuse. Each act of government retaliation must be judged—and rejected—on its own.

Finally, some argue that FCC regulation makes this routine. That category mistake ignores that the agency’s mandate covers indecency standards, not punishment of political viewpoints.

The Incongruence No One Wants to Name

Supporters of Kimmel’s removal often claim that misinformation must be contained (to which I would not fully disagree), yet only days earlier, during daytime hours on Fox’s flagship show "Fox & Friends”, host Brian Kilmeade said, “Or involuntary lethal injection or something. Just kill ’em,” while discussing homeless people with mental illness.

Kilmeade later apologized, calling the remark “extremely callous.” No FCC threats followed. No presidential suggestion that Fox should lose its license. No government investigation. Kilmeade’s statement, unlike Kimmel’s satire, invoked violence against a vulnerable population.

If government power were being used to protect the public from dangerous speech, Kilmeade’s words would have triggered a stronger reaction than Kimmel’s. They did not.

Social Media’s Parallel Dilemma

Major social-media platforms shape public discourse yet remain beyond the FCC’s reach.

“Facebook jail” once became a badge of honor for many of my outspoken friends. Elon Musk bought Twitter after denouncing its algorithm and promised a censorship-free zone. Years later, though, many left-aligned users migrated to Blue Sky, saying they no longer feel “safe” on X. Before that acquisition, Trump’s ban from Twitter prompted him to create Truth Social. These companies, led by some of the world’s wealthiest executives, claim to simply be neutral hosts for individual expression.

My own calls for stronger oversight can seem inconsistent with a defense of free speech, but the aim differs. This is not a plea for platforms to limit individual voices. Past instances of content suppression were troubling then and remain so now. The goal is to stop the platforms themselves from narrowing what people can see.

Algorithms create self-reinforcing echo chambers. By harvesting data from private messages and even nearby conversations, they target advertising and steer users toward ideological bubbles. These feedback loops have repeatedly fueled real-world harm.

Other industries face rules for safety and transparency without sacrificing individual rights. Similar regulations can require social-media companies to curb algorithms that trap users in confirmation-bias echo chambers without forcing disclosure of proprietary information. The purpose is not to silence speech but to stop corporations from constructing echo chambers that erode the marketplace of ideas Holmes defended.

Unplug: Read The Great Dissent

To see why this debate transcends one news cycle, read Thomas Healy’s The Great Dissent. Holmes—once willing to restrict radical speech—came to believe that only a “free trade in ideas” safeguards democracy. Protecting only popular speech protects nothing at all. Allowing any president to use regulatory power to punish critics would destroy the marketplace of ideas Holmes championed.

Intellectual honesty is not a matter of politeness or of withholding strong opinions. It is the disciplined practice of seeking truth even when (perhaps especially when) the truth unsettles our preferences or challenges our loyalties. It requires that we test our own assumptions, acknowledge evidence that weakens our position, and represent an opponent’s argument fairly before we critique it. It also asks us to separate the quality of an idea from the popularity—or unpopularity—of the person who voices it.

This discipline is not abstract. In the world of autism policy, it is a daily necessity because decisions here often determine whether our most vulnerable citizens receive adequate care or vanish in policy blind spots. Individuals with severe forms of autism often cannot vote, cannot parse the intricacies of healthcare law, and may struggle—if having any capacity at all—to functionally communicate their own needs. Their parents, caregivers, and advocates, therefore, shoulder the work of speaking to lawmakers and agency leaders across the political spectrum.

Intellectual honesty demands that we meet every policymaker—ally or adversary—with the same rigor: presenting facts clearly, listening carefully, and resisting the easy comfort of echo chambers. Without that commitment, the people who most need robust, nuanced systems of support will remain invisible while policies shaped by partisanship, not authenticity, determine their future.

Parents often tell me, “I wish I could do what you do” or “I don’t even know what to say when being told I’m not doing enough for my child.” Let’s start by understanding that there is nothing special that separates me from you; I am not hiding a cape in my closet or a halo under my pillow.

I have simply been yanked into the ring more times than most, so I am merely forged with a relentless tenacity, something I see in so many parents and providers serving this population. Thus, if quitting is not in your vocabulary, that is all you need here. Keep reading. I aim to help cut through the common fallacies in autism discourse by returning to intellectual honesty.

Families and providers who support individuals with severe forms of autism often face an uphill climb in policymaking spaces. The conversation is crowded with confident assertions, yet many of those statements rest on shaky reasoning.

Prevalence: Nothing to See Here (So They Say)

Some argue that the rapid rise in autism prevalence is the result of increased awareness and improved screening and diagnostics. The underlying data may show surging rates, but deciding what that means for public health planning is a matter of interpretation, not an uncontested fact. Accepting the statistics that show more children are being identified does not require accepting every conclusion someone draws from them. Advocates can agree on the data while still insisting that the long-term increase in identified cases calls for more research, services and funding.

“ASD is a serious neurodevelopmental disorder that has increased without interruption across all communities and subgroups,” [Dr. Walter] Zahorodny told me. And he says we should brace ourselves for numbers to go up: “The 3.22 percent number is, if anything, likely an underestimate.” Citing emerging data from New Jersey and other sources, he says that soon autism’s “new normal will be 5 percent.” (J Escher, Tablet Magazine, 2025)

Confronting the problem of spurious accuracy is central to how the National Council on Severe Autism (NCSA) addresses autism prevalence. Critics sometimes dismiss the idea of a genuine rise by pointing to very small, year-to-year changes—say, a shift from 2.7% to 3.2%—and then placate families “to relax.” That framing gives a misleading impression of precision: it treats an apparent half a percent difference as meaningless when, in population terms, that’s thousands of additional people who will need support. Critics use short-term variability to dismiss the entirety of the growth curve over time.

NCSA’s position is that while individual studies may vary slightly depending on diagnostic methods or sampling, the long-term pattern—a many-fold increase over decades—is far larger than any statistical wiggle room. Tiny fluctuations in small portions of the population in limited areas or timespans distract from the undeniable, broad rise in identified autism and the urgent need to plan for greater research, services and supports to meet that reality.

Toxic Positivity Meets Faulty Induction

Faulty induction happens when someone assumes that what is true of some members of a group must be true of the group as a whole. Some advocates highlight inspiring examples of autistic individuals who publish poetry, excel in sports, or build successful careers and then broadly declare that “autism is a superpower.” One prominent leader in the autism community went so far as to boldly claim on national television that for someone to even state that a quarter of the autism population may never do what other autistic individuals do is “eugenic.”

Celebrating those achievements is worthwhile, yet the experiences of a segment of the autism population do not represent everyone. Severe forms of autism often involve co-occurring intellectual disability or very low adaptive functioning. Many people require lifelong, intensive support, not intermittent assistance. Ignoring these realities in favor of an uplifting narrative may comfort the public, but it leaves the highest-need population invisible.

According to Maenner et al. 2023, only 38 % of autistic individuals have an IQ in the “average or above” range, while 24 % fall in the borderline range (IQ 70–85) and 38 % meet criteria for intellectual disability (IQ below 70). In other words, people with average or higher IQ make up well under half of the total autistic population, yet, as Russell et al. 2019 shows, when you look at who actually gets studied, the picture flips: fully 89 % of research participants are drawn from the “average or above” IQ group, with only 5 % from the borderline range and a mere 6 % from those with intellectual disability.

Assuming that the well-studied, more verbally capable subgroup represents all of autism distorts both science and policy. Because researchers and funding agencies have largely focused on the most accessible participants, the knowledge base, interventions, and even public messaging have been shaped by a narrow slice of the spectrum.

That “selection bias,” documented by Russell and colleagues, means that the daily realities and urgent support needs of people with severe forms of autism remain underresearched and underserved. Overlooking emergent properties—like the collective need for diverse services or the social and economic realities that appear only at scale—encourages a kind of magical overthinking: believing that a few inspiring examples reveal the true nature of all autistic people.

Take research funded by the U.S. Administration for Community Living (ACL), whose noble guiding principles emphasize advancing the “independence, productivity, inclusion, and integration” of people with intellectual or developmental disabilities. Even when the resulting studies are peer-reviewed and the services they inform benefit thousands, if the research largely excludes individuals unable to meet those benchmarks with the most severe forms of autism—who are often also shut out of “inclusive” programs—then citing that research as proof of broad inclusion is misleading. The source may appear authoritative, but its conclusions about inclusion and integration rest on a skewed sample.

“Deinstitutionalization” as a Cloak for Pervasive Abuse, Neglect & Harm

We regularly come across false dichotomies like: “Either you support full deinstitutionalization or you want people with disabilities warehoused and locked away forever.” The deinstitutionalization movement, galvanized by the Willowbrook scandal, is often praised as the hallmark of opportunity in disability justice circles. Typically, the debate over living arrangements is framed as a simple choice between keeping people with disabilities in state-run facilities or moving everyone into community living, yet the reality is far more complex.

Proponents of community-only models point to many successful placements, but even the federal Office of Inspector General has reported that roughly 99 percent of critical incidents in these settings go unreported. A 2018 NPR investigation found that individuals with intellectual and developmental disabilities are seven times more likely to be sexually abused, most often by someone they were taught to trust.

Headlines continue to remind us that abuse can happen everywhere: at well-known residential schools such as Anderson Center in New York, at privately run facilities like the Greer Center in Oklahoma—dubbed “Hell on Earth” by the New York Times—within Kentucky HCBS group homes where a nonverbal woman with severe autism suffered 117 unexplained injuries, a 12-year-old hog-tied in DCS home sparking a class-action law suit in Tennessee, and even in private family settings, such as Nevada parents who locked their autistic son in a feces-covered cage. These examples show that no model—large campus, small group home, or family care—is immune.

Serving individuals with severe autism is not unsolvable. The Center for Discovery in Harris, NY provides hope to the nation that people with severe forms of autism and related disorders can live safe, meaningful, joyful lives overflowing with relationships, connection, a sense of purpose, and access to appropriate holistic care. Unfortunately, it is the exception, not the norm. If policymakers want to truly solve the housing crisis, wouldn’t having a model like Center for Discovery in every region in every state be much more effective than the restrictive, false sense of security known as the HCBS Setting Rule?

Voices of Families

We recently held a Voices for the Voiceless virtual legislative initiative. We hold an in-person D.C. fly-in in the spring, but it was important to me to make legislative advocacy accessible to families struggling so greatly that they can’t even leave their house for the most routine things, let alone fly across the country to advocate. Many have their groceries delivered, not out of convenience or laziness, but necessity–caring for an adult chlid with intensive support needs on an empty waiver with no staffing or support. I spent weeks developing and conducting advocacy training and providing materials for the event—my style of advocacy—strategic, nuanced, targeted, and civil. Hear the voices of some of our participants:

“Something about it. Made me feel like I was rising above everything that was going on yesterday [Charlie Kirk’s death]. Above the hate. Two legislators that couldn’t be at more opposite ends of the political spectrum. And it was like being in the eye of the storm. Or maybe after the storm. With a rainbow in the sky. Yesterday was kind of a life changing experience for me.” (Mother of 21-year-old son with severe autism and catatonia)

“It was great! This was our second visit with the staffer of the office, but this was the first time [daughter] was able to represent. They are really receptive right now!” (Mother of 21-year-old daughter with CHARGE Syndrome and severe autism)

“Just finished a GREAT meeting with Senator Hagerty’s office. We are making PROGRESS! ❤️” (Mother of young son with severe autism)

“I have always stayed out of the politics because the letter after someone’s name doesn’t matter to my autistic son and the other disabled children we have adopted and cared for over the years through foster care. And I only care about if they are going to help our children.” (Bio, adoptive, and foster dad to four individuals with severe forms of autism and related disorders)

Most of the participants in our most recent legislative event weren’t natural-born advocates. (Are any of us?) They entered the space with trepidation. Most have doubts when I begin training on truly nonpartisan policymaking that bridges divides, especially with those politicians one might think are “hopeless.” Those are the most important meetings, though.

Don’t get me wrong. These families are often starved of any kind of praise. They’re more familiar with internet mobs gaslighting them for any effort they’ve made to speak their truth. The closest thing to praise most of them have is, quite honestly, well-meaning but veiled sympathy, such as, “I don’t know how you do it” or “You’re so strong.”

No one would slight these battle-worn parents if they chose to only engage in the safe echo chambers with legislators who fully aligned with their own political ideology. They’d have spent their time getting accolades for their strength and resilience, and perhaps a few remarks about how that legislator is committed to fighting for families like them (while they remain isolated at home with no services). Is that what ignites change, though?

These families trusted the process. They stepped out of their comfort zones, studied, researched, practiced, and deployed a truly effective form of advocacy. I’m incredibly proud of each and every one of them. Moreso, I am hopeful for the future for individuals, families and caregivers affected by severe forms of autism because these advocates are making a difference. Things will be changing. I have total faith in that.

A Final Word

Intellectual honesty is the thread that binds every part of my advocacy approach—from challenging the comforting myth that autism is always a “superpower,” to demanding that research represent the entire spectrum, to confronting the reality that abuse can occur in every setting, and much more.

It calls us to weigh data on prevalence without clinging to numbers that flatter our argument, to critique both the romantic narratives and the partisan trench warfare that so often define autism policy. Practicing it means we refuse easy villains or heroes, we test our own assumptions as rigorously as we test others’, and we speak with those we distrust because the people we represent cannot speak for themselves.

Share

I want to write about intellectual honesty. However, to get there, I have to start with war.

For years my life was steeped in the quiet aftermath of combat. I was married to a Purple Heart Marine, and together we ran a retreat for veterans. We did not simply visit veterans; we built a home where they could exhale. Marines from Iraq and Afghanistan came, of course, yet so did men who had fought in Korea, in Vietnam, and in places history books reduce to footnotes. Many were sleeping in their trucks or in the woods, too wary of human promises to trust anyone.

They arrived carrying packs far heavier than their rucksacks—grief, moral injury, and the sediment of decades. Over time they trusted us, then each other, and eventually even a few angels inside the VA system. We helped some find their way back to medical care, to housing, and to a life.

I came to know their hearts. I rocked on the porch beside an OIF Marine strumming his guitar next to his sleeping dog. I watched a Gulf War soldier teach my youngest son about the various woods of guitars. A sixty-seven-year-old paratrooper showed me how to make a perfectly safe and healthy salad from what grew wild on our property. These men were kind, creative, and mischievous.

What convinces an eighteen-year-old to pull the trigger or watch life leave another human being at arm’s length in close combat? Moreover, how does that same person come home and delight in pranking his wife or cheer when his child beats him at chess?

Many of us prefer tidy answers: “That was then; this is now,” or “They did what they had to do, and they healed.” The harder truth is that many of these men enjoyed parts of their work overseas, not because they were cruel, but because survival demanded a mental shift in which violence was not merely justified but necessary. Those who made that psychological pivot often came home a bit more intact. The ones who could never stop seeing the enemy as a husband, a son, or a father carried the heaviest moral injuries.

Violence begets violence, yet most of us cling to the belief that harming another human is never the answer. Nevertheless, stretch the scenario: someone threatens your child or spouse—would “never” still hold?

That truth is ancient. What is new is the algorithmic accelerant we have poured onto our discourse. When was the last time you saw a paperboy? When did you last hold an actual newspaper? We traded the slow ethic of print journalism for the dopamine rush of the infinite scroll; clickbait headlines, Aunt Suzie’s hot takes, and Uncle Jim’s “fact-checks” flood our feeds.

Digital platforms monetize outrage. We are more likely to watch the video that validates us than the one that challenges us. Social media executives thrive only if we retreat into echo chambers and define the “other.”

Once you are convinced your neighbor’s opinion is an existential threat to your child, what remains unthinkable?

This is the very same mental shift soldiers undergo, only now it is happening in living rooms and timelines. Some people are already cheering for the metaphorical fight while the rest of us look on, morally injured.

What terrifies me is not that violence exists—it always has—but that we are moving the goalposts of when violence feels permissible, and we are doing it without even noticing.

I never wore a uniform. I suspect that if I had, I would have followed orders (Catholic school roots), done what needed to be done (rare disease mom), and grieved for decades. Even today, when political extremists from either side declare that my centrist instincts are a threat, I still see their humanity. I see their fear, their trauma, and their losses, even while living in an age where I know how quickly their internet rage could turn into serious physical harm.

That empathy made me effective in serving veterans. It sustains my work now with families affected by severe autism and rare diseases. From a survivalist standpoint, however, it is not exactly adaptive. Therefore, I wield the only tool I keep sharpened: words.

I write, I speak, and I train advocates. I hold book clubs and lead grassroots networks. All of it aims to keep people centered in the truth that disagreement is not assault and debate is not violence. Disruption can lead to innovation, provided we remain civil.

Violence cannot solve ideological differences any more than a heart-to-heart can stop a murderer. Nevertheless, diplomacy and real dialogue can keep our social fabric from tearing.

The black-and-white “us versus them” narrative is, at its core, intellectually dishonest. Are you truly diabolically opposed to another human being? That many human beings? Is there not one point of agreement, one shard of yourself you can find reflected in them?

Social media will not show you that reflection. There is no profit in humanizing the enemy. Consequently, if you must be angry, be angry at that.

Force your algorithms to betray their business model. Click on perspectives you normally dismiss. Pick up the phone. Set a Zoom call. Meet someone you think of as an “other.”

Because if we surrender our own humanity in the process, we may find, as too many of America’s quiet heroes already know, that once it is gone, it is painfully hard to win back.

Share

Subscribe now

“There are two kinds of people in this world when you boil it all down. You got your talkers and you got your doers… it’s the doers that change this world.” – Boondock Saints II

This week, as the national conversation around civil discourse grew louder—and shockingly more dangerous—that line kept echoing for me. I’ve always been drawn to the beauty of tension. As a high-school alto, I loved the richness of dissonant chords. Later, as a photographer, I favored color palettes that sit on the edge of contrast—analogous and split-complementary—where subtle differences create unexpected harmony. I’ve built my career in public policy the same way: believing that progress is found not in shouting matches but in the careful work of balancing competing ideals.

That conviction has often carried a cost. After President Trump’s inauguration, nearly every national disability organization rallied around the “Save Medicaid” slogan. I share the belief that Medicaid is essential, but I also know—because families remind me daily—that Medicaid is broken. To me, “Save Medicaid” absent of at least a conversation acknowledging the need for reform felt like “save the status quo.”

Many hold Home and Community-Based Services (HCBS) waivers, yet receive no services at all. Rather than shout the ubiquitous slogan, I urged advocates to meet legislators of every political stripe with civility, facts, and nuance. We kept a seat at the table when others were shut out. Later, seasoned lobbyists admitted the era of crowdsourced outrage had given way to one demanding precision and dialogue—exactly as I had been leading all along.

For that, I was branded “fascist,” even “eugenicist.” People I had considered friends who knew I opposed extremist policies still wrongly assumed that my refusal to join the high-key melody meant allegiance to the worst motives. TikTok, YouTube, Facebook, one social media channel after another, became littered with the garbage mischaracterizations of me or others alongside me.

Some directly fought back, others provided indirect corrections, but I disengaged. My booking button stays public. It’s in my email signature, my LinkedIn profile, and under my bio on the very webpage some were grabbing screenshots to fill their incendiary content. I always invite conversation, but I didn’t chase it.

It was the same stomach-dropping feeling I had watching people I love fall into other mob mindsets from the other side of the aisle in prior years: how quickly we label what we do not want to understand.

This week, that consternation was amplified by the killing of conservative activist Charlie Kirk. I disagreed with many of his positions and found common ground on some as well, but our modern social climate is blinded to shifts in hue by stark contrast alone. Even on issues on which I remained 180° apart from him, I respected his ability and willingness to communicate the premises of his conclusions.

Like me, he believed civil discourse is the lifeblood of democracy. Like me, he genuinely listened to those who opposed his ideas, setting down the mic time and again, even when others used a bullhorn in theirs. His tour was not called “watch me prove you wrong” but “prove me wrong.” Unlike me, though, he didn’t disengage—quite the opposite—the cost of which is inconceivable.

Within the hour of his murder, my social feeds started filling with snippets taken out of context of statements Kirk had made as justifications for celebrating something so unthinkable that I was still struggling to even process what I’d seen. I know all too well about those snippets taken out of context by cowards too afraid to have open dialogue, those who would rather disparage, insult, intimidate, or silence others with ideas that they can’t defeat through civil debate.

Sadly, in our community of those affected by severe forms of autism, you don’t need a public platform or any status as a thought leader to have an intimate experience with attacks. Families, simple everyday moms and dads, or even siblings barely old enough to vote, have faced harsh, swift punishments from the online strike mobs for daring to speak about their own reality.

And yet, hope persists. The day following Charlie’s murder, my daughter and I joined Tennessee families to meet with Senator Marsha Blackburn’s office during the National Council on Severe Autism’s “Voices for the Voiceless” event. The day after that, we met with Senator Bill Hagerty’s office. Across the country, families sat down with their own federal legislators to talk about urgent needs in housing and research for individuals with severe autism. It was a quiet, determined display of democracy—ensuring that even our most vulnerable citizens can have meaningful participation and representation in our democratic process.

Another fellow mother participating in the legislative initiative once wore a football helmet daily to protect herself from her son’s aggressive outbursts as he battled catatonia. Through a partnership between Rideshare Safety Partition and NCSA, she was finally able to transport him safely to ECT treatment. Recently, they’ve been attending dance festivals together; just yesterday, they lobbied Congress side by side. A year ago, he nearly didn’t survive. Now he is thriving—a living testament to what careful, civil, persistent advocacy can accomplish. Moreso, the photo she shared of one of her meetings with her healthy, happy son engaging with a federal office was a needed reminder for my own crushed spirit as to why we can never surrender to those who try to silence us.

Complex harmony: that is what I hear—in music, in policy, in the lives we touch. I don’t have to agree with someone to value their humanity. It’s never a single clear note. It’s the tension of dissonance that, when we refuse to stop having hard conversations, resolves into something unexpectedly beautiful. In an era when nuance can feel dangerous, protecting the space for civil discourse is not just noble work. It is the work that keeps democracy alive.

“You know how we heal our divides? By talking to people we disagree with…You heal the country when you allow disagreement and you allow a microphone with people who have differing views.” – Charlie Kirk

Subscribe now