Building a divergent movement.
What it takes to organize as an AuDHD community, what passing gives us and costs us, and what we owe the people the door never opens for.
In the winter of 1912, the mill women of Lawrence, Massachusetts put their children on trains to strangers' homes so the kids would eat while their mothers held the line.
Thirty thousand workers had walked out that January, speaking twenty-five languages between them. When the mothers brought more children to the station, police met them with clubs. They held anyway, and in March they won.
The words that followed them into history came from a poem printed weeks before the strike: "Hearts starve as well as bodies; give us bread, but give us roses!" Bread is the wage. Roses are the life. They wanted both, for everyone on the line, in every language.
We want both too. Our bread is the accommodation that gets approved, the diagnosis that gets believed, the truth about our brains told straight. Our roses are the right to take the mask off and still belong.
The line held in Lawrence because nobody got left on the platform. Somewhere tonight there's an autistic adult who doesn't speak, whose rights belong to a guardian, who is paid less than the minimum wage, legally. They'll never be on this call. Tonight is about them too.
(1912 Lawrence textile strike; Oppenheim, "Bread and Roses," The American Magazine, December 1911)
The AuDHD fight runs on four fronts: getting named, getting accommodated, getting the facts out, and getting taken seriously. Each one is easier with more than one of us.
AuDHD means being autistic and ADHD at the same time. Until 2013, you could not officially be both. Plenty of us are, and plenty of us found out late.
The diagnostic manuals doctors use (the DSM in the US, the ICD internationally) used to treat autism and ADHD as mutually exclusive. The 2013 edition, DSM-5, was the first to allow both in one person. (Hours, Recasens & Baleyte, Frontiers in Psychiatry, 2022)
From a study that pooled the results of 96 earlier studies. Reviews that count ADHD traits instead of formal diagnoses put the overlap at 50% to 70%. (Lai et al., Lancet Psychiatry, 2019; Hours et al., 2022)
15.5 million American adults had a current ADHD diagnosis in 2023. More than half got it at 18 or older, after school, after the first jobs, after the years it would have helped most. (Staley et al., CDC MMWR, 2024)
Most of us found our diagnosis through somebody else's story. We can keep that happening on purpose: a shared list of clinicians who assess adults and take AuDHD seriously, notes on who offers sliding-scale evaluations, priced by income,, and a group where self-identified members count as full members.
The law is on our side more than most of us know. Asking is the hard part, and most of us never do.
From 5,406 employer responses between 2019 and 2024. When there was a one-time cost, the median was $300. (Job Accommodation Network, 2025)
Almost two-thirds no longer considered themselves disabled by the time they got there. The accommodations existed. Hardly anyone claimed them. The data is from 2009. (National Longitudinal Transition Study-2, 2011)
Since 2009, the Americans with Disabilities Act (ADA) has been read "in favor of broad coverage," and the major life activities it protects now explicitly include "learning, reading, concentrating, thinking, communicating, and working." That's the whole AuDHD list, written into federal law. (ADA Amendments Act of 2008, EEOC)
Bring the number into the room: most accommodations cost nothing, and the Job Accommodation Network (JAN), a free, confidential federal advice line, will tell you what to ask for. Between us, nobody has to walk into that HR meeting alone. A shared folder of requests that worked, and one of us on standby to read yours before you send it.
We're fighting bad information from two directions at once: the influencer who makes it cute and the officials who make it a tragedy.
The 100 most popular ADHD videos had over 283 million views. About half got it wrong. Only 21% were rated useful. (Yeung, Ng & Abi-Jaoude, Canadian Journal of Psychiatry, 2022)
Of the top 133 informational autism videos, 41% were inaccurate and 32% overgeneralized. Together, 198.7 million views. (Aragon-Guevara et al., Journal of Autism and Developmental Disorders, 2023)
In April 2025 the Secretary of Health and Human Services said autism "destroys families" and that autistic kids will "never pay taxes" or "hold a job." In September the President told pregnant women, "Don't take Tylenol," linking it to autism. The largest well-designed study, of nearly 2.5 million Swedish children, found no link once brothers and sisters were compared with each other, which rules out family factors. The national association of obstetricians called the announcement "irresponsible." In November the website of the Centers for Disease Control and Prevention (CDC) was changed to say "vaccines do not cause autism" is "not an evidence-based claim." (PBS NewsHour, 2025; FactCheck.org, 2025; Ahlqvist et al., JAMA, 2024; ACOG via CBS News; CBS News, 2025)
We can't outshout a feed or a press conference. We can be fast and right in our own corner. When a claim like the Tylenol one lands, one person posts the actual study in plain language within a day, so every member has something to send their family.
We get it from both sides. To the people who think autism destroys families, we don't count as really autistic. To everyone else, we're making a fuss over a quirk.
In 2,225 autistic children, IQ was "a weak predictor" of how well they actually managed daily life, and daily functioning fell well below IQ for the kids without intellectual disability. The researchers' conclusion: the term "should be abandoned." Looking capable and being able to do the thing are two different measurements. (Alvares et al., Autism, 2020, Australia)
Autistic adults in a US study described "invalidation as both a barrier to and product of diagnosis." People doubted them before they got it and after. A large UK comparison found self-identified autistic adults carry mental health burdens comparable to diagnosed ones. (Ardeleanu et al., Autism, 2025; Schalbroeck et al., 2026, preprint)
The answer to "not that big a deal" is specifics. We can collect ours: what a bad week costs in hours and dollars, in our own words, shared where it's safe. One story is an anecdote. Twenty in a folder is testimony.
It's early and the studies are small, but they point the same way.
A Philadelphia program where autistic people deliver peer support had 90% satisfaction, and a follow-up found fewer unmet needs after three months. A 2026 review of 12 programs found "promising benefits" for empowerment and well-being, with small samples. (Shea et al., 2024; Song et al., 2024; Verkooijen et al., Autism, 2026)
Autistic people who feel more connected to the autistic community report better wellbeing. Connection didn't cancel out the harm of masking, though. Community gives you somewhere to put the mask down. It doesn't make the world stop asking you to wear it. (Cage, Cranney & Botha, Autism in Adulthood, 2022)
The Autistic Self Advocacy Network was started in 2006 by autistic adults, "run by and for autistic people." Within four years its co-founder, Ari Ne'eman, became the first autistic person on the National Council on Disability, the body that advises the President and Congress. (ASAN; National Council on Disability)
Everything in Part One gets harder for people who pass. Passing is also what put most of us in a position to fight about it.
The sociologist Erving Goffman named it in 1963: "the management of undisclosed discrediting information about self." Hiding the thing so nobody knows it's there. (Goffman, Stigma, 1963)
His second idea is the one we live in more. People who admit the stigma "may nonetheless make a great effort to keep the stigma from looming large." "Many of those who rarely try to pass, routinely try to cover." You told them. You're still shrinking it. (Goffman, 1963)
The law professor Kenji Yoshino split covering into appearance, affiliation, association and advocacy. The last one is ours tonight. You can cover by not speaking up for your own group, so you seem like one of the reasonable ones. Organizing means refusing that kind of covering. (Yoshino, Covering, 2006; Yoshino & Smith, 2013)
Autistic adults say it plainly. (Camouflaging is researchers' word for masking.) "Camouflaging helps to survive in school and college and it is important for keeping jobs." "I want to avoid the bullying mostly." Autistic women were more likely to name formal settings like work as the reason. Passing pays rent and gets us through the door. (Hull et al., 2017; Cage & Troxell-Whitman, 2019)
The same studies name exhaustion and a shaky sense of who you are. Camouflaging heavily, or switching it on and off, was tied to worse mental health. And it hides you from the help: "I went for so long without being diagnosed because they didn't know that I could pretend to be normal!" (Hull et al., 2017; Cage & Troxell-Whitman, 2019)
The better you pass, the less anyone believes you need anything. That's the cost to us. Part Three is about the people who can't pay it at all.
Most of us pass at least some of the time. We can treat it like a budget: spend it where it gets someone else through the door, like the meeting where the policy gets written, and unmask where it's safe so the people watching learn they can too.
This room is mostly people who can type in the chat, hold a job some of the time, and get a diagnosis eventually. A lot of autistic people can't do any of that.
The term comes from the Lancet Commission, a panel of autism experts convened by the medical journal The Lancet. It describes people who are "minimally verbal or non-verbal, are not able to advocate for themselves, and require 24-hour access to an adult who can care for them." In the CDC's tracking data, 26.7% of autistic 8-year-olds met it. (Lord et al., The Lancet, 2021; Hughes et al., Public Health Reports, 2023)
Even after years of intervention. In CDC data, 39.6% of autistic 8-year-olds with IQ scores also had an intellectual disability. (Tager-Flusberg & Kasari, Autism Research, 2013; Shaw et al., CDC MMWR, 2025)
Children with profound autism were more likely to be girls, kids of color and kids from low-income families. Black children have also been less likely to get an autism diagnosis at all, regardless of IQ, and diagnosed later when they do. (Shaw et al., 2025; Hughes et al., 2023; Mandell et al., 2002 and 2009)
That's the estimate from a review of media coverage of police killings. Passing, at a traffic stop, can be the difference between a ticket and a funeral. (Perry & Carter-Long, Ruderman Family Foundation, 2016)
A court hands someone else the power to make their decisions. The National Council on Disability described what's lost as a "civil death" of a person's rights. (National Council on Disability, Beyond Guardianship, 2018)
Waiting for Medicaid services that let them live in the community instead of an institution, in 41 states, for an average of 32 months. 74% have intellectual or developmental disabilities. The Supreme Court ruled in 1999 that "undue institutionalization" is discrimination. (KFF, 2025; Olmstead v. L.C., 1999)
About 40,579 disabled workers were paid below the minimum wage in 2024, and the Labor Department dropped its plan to end that in July 2025. The Judge Rotenberg Center, a residential school in Massachusetts for disabled children and adults, has kept using electric skin shock on its residents. The Food and Drug Administration's ban was struck down in court in 2021, Congress restored the agency's authority in 2022, and as of this summer the new ban still hadn't been finalized. (Federal Register, July 7, 2025; FDA rulemaking record via Liam O'Dell, July 2026)
Parents of profoundly autistic children have made this case against the neurodiversity movement for years. Jill Escher of the National Council on Severe Autism: "for the vast majority, autism is not a mere 'neurodiversity,' it's disabling, it's life-limiting." The worry underneath is that people who can live on their own will set the agenda and leave everyone else behind.
The Autistic Self Advocacy Network answers that "profound autism" is "just an attempt to rebrand the same harmful notion" of functioning labels (terms like "high functioning" and "low functioning"), and that the label "doesn't give us any actionable information about why a person needs support or what support they need."
Both of those can be argued all night. The part that isn't arguable is who shows up to argue. The people most affected are the least likely to be in the room, on either side. That's ours to deal with, and the disability rights movement already had this exact fight.
(National Council on Severe Autism; ASAN, "Functioning Labels Harm Autistic People," 2021)
Look at who's in our member list and who isn't. We can build the bridges: text-only ways to take part, ties to self-advocacy groups led by people with intellectual disabilities, and room for the parents and caregivers of nonspeaking autistic people, who are fighting the same systems from the other side.
Disabled people have been organizing across this exact gap for fifty years. The good versions all did the same thing: the people with access used it to carry the people without.
More than 100 disabled people locked themselves into the federal building at 50 United Nations Plaza to force the government to sign the rules enforcing Section 504, the part of a 1973 law that banned disability discrimination in federally funded programs. It had sat unenforced for four years. They stayed 26 days, and by some counts over 150 were inside at the peak. The Black Panthers "dropped off one hot meal and supplies for two more meals" every day. Glide Memorial Church and the Gay Men's Butterfly Brigade, a neighborhood street patrol, backed them too. The regulations were signed on April 28. (Longmore Institute, SFSU; National Park Service)
Activists from ADAPT, a disability rights group known for direct action, left their wheelchairs and crutches at the foot of the Capitol steps and pulled themselves up. Jennifer Keelan was eight: "I'll take all night, if I have to." The Americans with Disabilities Act was signed four months later.
James Charlton put the slogan in a book title in 1998 after hearing it from South African disability activists. That same decade, autistic people built their own movement: Autism Network International in 1992, Jim Sinclair's "Don't Mourn for Us" in 1993, and "neurodiversity" in print by 1998. Researchers now describe the idea as "collectively developed by neurodivergent people." (Charlton, 1998; Autism Network International; Botha et al., Autism, 2024)
Disabled activists of color, among them Patty Berne, Mia Mingus, Stacey Milbern and Leroy Moore, built a framework aimed straight at the rights movement's blind spots. Berne wrote that the movement's leadership "has historically centered white experiences" and "centers people who can achieve rights and access through a legal or rights-based framework." Read that and look around this room. (Berne, "Disability Justice: a working draft," Sins Invalid)
The second of the ten principles of disability justice, written by the Bay Area disability arts group Sins Invalid: "we are not looking to academics and experts to tell us what's what," but "lifting up, listening to, reading, following, and highlighting the perspectives of those who are most impacted by the systems we fight against." (Sins Invalid, 10 Principles of Disability Justice)
The seventh principle names us directly, alongside the people we're talking about tonight. It breaks down the isolation between "neurodiverse people, people with intellectual or developmental disabilities" and everyone else. Mia Mingus put the trap plainly: "The myth of independence reflects such a deep level of privilege." (Sins Invalid; Mingus, Leaving Evidence, 2017)
Every one of those wins started smaller than this group: a few people deciding someone else's problem was theirs too. The 504 protesters had a church, a gay men's street patrol and a political party that brought dinner. We have a Skool board, a Zoom link and each other.
We don't have to pick between our own fight and theirs. The 504 protesters didn't. Here's where tonight's threads meet: things this room could start this month, cheapest first.
The request that worked, the wording HR accepted, the follow-up that got it in writing. The law covers concentrating, thinking and communicating, and most of what we need costs nothing. A shared folder makes asking less lonely.
When a video or a press conference gets it wrong, one of us posts the actual study. Half the top ADHD content is misleading. We can't fix the feed. We can make sure nobody here has to argue with their uncle alone.
Federal rules on shock devices, subminimum wage and home and community services go through public comment, a window when anyone can send the government their view on a proposed rule. A comment from someone who can write fluently about being disabled carries weight. We can carry an issue into a room the people it hurts most can't reach, and say so.
Leadership of those most impacted means finding the self-advocates (people with intellectual disabilities who speak for themselves, a movement of their own), the nonspeaking writers, the families, and amplifying them instead of summarizing them. When we're the ones speaking, we say who we're not.
Chat-first sessions already work for people who don't talk on camera. Captions, text-only ways to join, and room for people who type to communicate make this a place more of us could reach.
Choose one place where you've been the reasonable autistic one, quiet about the rest of us. Unmasking there is a political act, and you get to pick where it's safe to try.
We got through the door. Don't let it close behind you.
We name the sources because the ideas are borrowed. Most of them were borrowed from disabled people who organized long before us.
This one can stir up grief about years spent masking, and guilt about getting through doors other people can't. Both are allowed. Neither one has to be resolved tonight. If something lands hard, say so in the chat or step away and come back.
Bring one fight you'd organize for, and one person who isn't in the room that it would help.