Breaking the Puzzle: How Autistic Voices Changed the Narrative

By Summer Lewis

I was fifteen and working my first job at a high school library, a quiet job mostly returning half-read books to their spots and filling the display case with something relevant that might entice teenagers to consider reading. April rolled around, and my boss handed me the month’s assignment: make the Autism Awareness Month standee.

So I did what I thought made sense. I pulled every book I could find with autistic characters, The Curious Incident of the Dog in the Night-Time, Rules, Mockingbird, most of them about boys and made the information card with a bright red border, a sharp contrast to the blue covers that draped over nearly every book about autism. I chose red on purpose. Not the soft blue light that lit up buildings every April, but a sharper color. One I had read about online, in forums run by autistic adults…#RedInstead, they called it. A protest against the blue wave of Autism Speaks. A color that meant resistance. Pride. Autonomy.

When I started putting everything up, the librarian paused behind me. “Why red?” she asked, confused. I hesitated and mumbled something about how the autistic community didn’t like the puzzle pieces, how the color blue had been chosen for them, not by them.

She blinked and moved on, content with the answer. She knew me, and she knew how online I was. How I was a self-proclaimed Social Justice Warrior on Tumblr constantly. The display stayed up all month. But I kept thinking about that question.

Why red?

Why not blue?

Why had I even needed to explain?

Back then, I didn’t have the language to say what I felt. I just knew something was off about how we talked about autism, how it was always described in terms of tragedy, silence, or little boys named Sheldon Cooper who had genius math skills and meltdowns in grocery stores. I knew that red meant something different, and that I had stumbled into a conversation much bigger than a display.

Years later, I still think about that display. About the symbols we assign to people. About the stories we tell when they can’t speak or when we refuse to listen.

Because the truth is, for decades, organizations like Autism Speaks have spoken over the very people they claim to represent. They’ve promoted fear-based, deficit-centered narratives from blue lights to puzzle pieces to commercials like “I Am Autism,” which portrayed autism not as a neurotype but as a monster that stalks families and ruins lives [4].

But the story is changing.

Autistic people are rewriting it themselves through pride, protest, poetry, policy, and persistence. The red is starting to stick. So are the infinite rainbows and gold pins. So are the voices.

And maybe now, someone else making a library display won’t have to explain why.

Autism doesn’t come with a uniform. No two autistic people are the same, not in how they think, speak, stim, mask, or move through the world. And yet, the public image of autism has been astonishingly narrow for decades: almost always male, usually white, verbally quirky but intellectually gifted, and almost exclusively written from an outsider’s point of view.

That’s not just a coincidence. It’s a result of who’s been telling the story and what symbols they’ve chosen to center it.

The blue lights of Autism Speaks, the puzzle piece logos, the talk of epidemics and cures these all point to a deficit model. A narrative where autism is something to be mourned, managed, and hopefully outgrown. In the media, that lens takes shape through characters like Raymond in Rain Man or Sheldon in The Big Bang Theory, men who are brilliant, emotionally distant, and often infantilized, even in adulthood. Even Sheldon says “my mother had me tested” to any question of his possible autistic nature, a line that triggers the laugh track. Rarely are they shown as part of a larger, diverse, living autistic community. More often, they exist to teach a neurotypical audience patience [12].

So what happens when someone doesn’t fit that mold?

They look elsewhere.

Across online forums, fanfiction archives, and comment sections, there’s an entire ecosystem of people reading themselves into characters who aren’t explicitly labeled autistic, characters like Spencer Reid, Abed Nadir, or L from Death Note. People see their stims in flapping sleeves, their hyperfixations in encyclopedic monologues, their social confusion in scripted interactions. These characters become stand-ins for visibility that official stories never gave them.

Meanwhile, in the rare cases where a character is labeled as autistic in the show, the reception is mixed. Often, they’re written by non-autistic creators with clinical research but no lived experience. The result? Stereotypes that are flat, heavy-handed, or worse, surrounded by dialogue that constantly reminds the audience of their diagnosis, as though their entire identity can be summed up in three letters: ASD.

But not always.

In the 2020 Freeform series Everything’s Gonna Be Okay, autistic representation finally stepped into something closer to reality. The show follows Nicholas, a twenty-something guardian raising his two half-sisters, one of whom, Matilda, is an autistic teenager with dreams of becoming a professional musician. Matilda is played by Kayla Cromer, who is autistic herself, and her character isn’t reduced to “the autistic one.” She’s funny, flawed, ambitious, occasionally selfish, and deeply human [14].

The show also featured another autistic character, Drea, portrayed by Lillian Carrie. In an unexpected turn, the actor of Nicholas, Josh Thomas, later shared in interviews that working on the show led him to explore his own neurodivergence and ultimately, to an autism diagnosis of his own. In seeing a character with autistic traits, he began to recognize those same patterns in himself.

That kind of representation isn’t just powerful. It's reflective. It creates space where identity can be explored, discovered, and affirmed. And it does so without reducing the character to a checklist of symptoms [14].

There’s something revelatory about seeing yourself not as a cautionary tale or a punchline, but simply as a person living their life.

That’s what stories can do when they’re told right. They can reflect back truths you didn’t know how to name. They can give language to feelings you thought were only yours. And they can offer dignity in a world that often prefers diagnosis over understanding.

So when someone says they see themselves in a dragon-loving princess or a hyper-verbal alien or a side character who fidgets more than the script explains, what they’re really saying is: I want to exist in this world, too.

They’re reaching for a story that includes them not as a problem to solve, but as someone with a voice, a shape, a spectrum of colors that don’t have to be blue. But sometimes they are blue if you see yourself in Brainiac-5 from CW’s Supergirl like I do. 

In 2009, Autism Speaks released a commercial called “I Am Autism.” It aired on national television and quickly found its way to schools, doctor’s offices, and living rooms across the country. Styled like a suspense trailer, the video features a deep-voiced narrator intoning lines like:

“I am autism. I know where you live. And if you’re relaxed, I will make sure your marriage fails.” [4].

It goes on:

“I work faster than pediatric AIDS, cancer, and diabetes combined. I will make sure your voice is never heard.” [4].

The children shown in the video were real, but none of them spoke. Their parents did, often tearfully. Autism, in this telling, was an external force, a curse, a shadow lurking over the family unit. The narrator concludes with a threat:

“I am autism. And I will win.” [4].

For many autistic viewers, it was less a PSA and more an exorcism.

The Autistic Self Advocacy Network (ASAN) immediately condemned the campaign, calling it “dehumanizing” and “dangerous.” Their official statement read:

“It portrays autistic people as burdens, as individuals who can only live in the shadows of others' suffering.”–ASAN, 2009 [3]

The blowback wasn’t just philosophical. The ad had real-world consequences. Parents who saw it often assumed the worst: that their child’s life would be tragic, lonely, and unrecognizable. Schools and service providers echoed that language and began offering interventions designed to make autistic children appear less autistic, rather than support who they were. [3]

Fear, it turned out, was good for fundraising. Autism Speaks raised millions off campaigns like “I Am Autism,” with much of it going to research toward prevention or cure, not to support, education, or services for autistic people living today. In fact, as late as 2010, less than 4% of their budget went toward services for autistic individuals and families [20].

Meanwhile, autistic people who were supposedly at the center of this cause were rarely invited to speak, sit on boards, or shape the narrative. Their own advocacy was often sidelined or dismissed.

The problem wasn’t just the message. It was who got to deliver it.

Sarah Kurchak in an article on The Guardian said [13]

“According to the highly influential charity Autism Speaks (which doesn’t have a single autistic person on its board), autistic people are “missing” – we leave our family members “depleted. Mentally. Physically. And especially emotionally.” Defining our existences solely as a tragedy for non-autistic people is hurtful on a personal level. No one deserves to be told that they are nothing but a burden to the people who love them and everyone has the right to feel like their lives have value.”

This deficit-driven approach didn’t stay in the past. It echoed again in 2024, when presidential candidate Robert F. Kennedy Jr. remarked publicly that the rise in autism diagnoses was a national tragedy, claiming, without evidence, that it stemmed from vaccines and environmental toxins. Though his comments were swiftly debunked, they reflected the same outdated belief: that autism is something gone wrong [16].

But this time, the pushback was louder.

Dani Bowman, an autistic entrepreneur and star of Netflix’s Love on the Spectrum, responded on Instagram:

“We don’t need pity; we need opportunity. We don’t need stereotypes; we need understanding.”–Dani Bowman, 2024 [18].

James B. Jones, another cast member and autism advocate, echoed the sentiment:

“ I’ll be diplomatic and say I wish Mr. Kennedy would resign from his position. Let someone who’s actually competent take that role. That’s a lot more diplomatic than what I was originally planning to say.–James B. Jones, 2024 [18].

Even on Reddit, in autistic spaces long neglected by mainstream media, users dissected “I Am Autism” line by line offering annotations and counter-narratives. One user wrote:

“I knew going in that Autism Speaks spoke nothing but rubbish, but...I don't know. Being told that I'm responsible for my parents divorce, being told that I have no moral compass, being told that I make the lives of everyone around me miserable...it really hurt me” – u/TommyCola65, r/autism, reflecting on I Am Autism  [17].

That’s the lasting harm of fear-based messaging: it seeps into families, friendships, institutions. It becomes the filter through which autistic people are first seen, before they’ve even spoken for themselves.

But something has shifted. The backlash to Kennedy’s comments wasn’t just a defense, it was a declaration. That autistic people are not tragic. That autism is not a ghost story to scare parents straight.

And that fundraising built on fear isn’t awareness. It’s erasure dressed up in empathy.

For a long time, the dominant voices in the autism conversation belonged to parents, doctors, and scientists. Autistic people, when mentioned at all, were described in clinical terms or sympathetic footnotes. They were rarely asked what they needed or what they believed about themselves.

That silence didn’t last.

In 2006, then-teenager Ari Ne’eman founded the Autistic Self Advocacy Network (ASAN) with a simple but radical mission: to put autistic people at the center of conversations about autism. At 18, Ne’eman became the first openly autistic presidential appointee, joining the National Council on Disability under President Obama. But before that, he was just another autistic kid watching others define his existence [9].

So he started an organization with a rallying cry: “Nothing About Us Without Us.” [9].

The phrase, borrowed from disability justice movements around the globe, became the cornerstone of ASAN’s work. It’s more than a slogan, it's a demand for participatory ethics. For representation not as decoration, but as leadership.

“Having a seat at the policy table" – is far from radical. "These ideas wouldn't even be considered controversial in the general disability world. This isn't anything other than basic common sense. You should involve autistic people instead of trying to make autistic people 'normal'."-Ne'eman [15]

ASAN’s early victories showed just how urgently that presence was needed.

In 2007, the group led a campaign against the “Ransom Notes” ad series in New York City, a public service campaign that depicted autism and other disabilities as kidnappers. One ad read:

“We have your son. We will make sure he will not be able to care for himself or interact socially as long as he lives.”–“Autism” in the Ransom Notes campaign  [11]

The implication was clear: autism steals children. Parents must fight to get them back.

ASAN mobilized. With open letters, petitions, and media pressure, they convinced the NYU Child Study Center to pull the ads in just 12 days. It was one of the first times a public narrative about autism was directly challenged and changed by autistic people themselves [11].

Shortly after, ASAN joined broader disability coalitions to oppose the use of aversive therapies particularly the use of electric shock on autistic students at the Judge Rotenberg Center. They lobbied Congress, submitted amicus briefs, and amplified survivor testimonies. By 2020, the FDA finally banned the use of electric shock devices for behavioral modification (though legal challenges remain). ASAN’s presence was instrumental in pushing that effort from the shadows into public view [2].

At the heart of these campaigns is a core belief: Autism is not a disease to be cured. It is a way of being.

This belief falls under the broader umbrella of neurodiversity, a term coined by sociologist Judy Singer in the 1990s. Neurodiversity recognizes conditions like autism, ADHD, and dyslexia not as disorders, but as natural variations in human cognition. It frames diversity in how we think, feel, and interact as a strength not a flaw [7].

ASAN embraced that framing early, publishing guides, policy toolkits, and public statements built on the idea that inclusion should not require conformity. Their Navigating College guide, written by autistic college students for autistic college students, was one of the first resources of its kind free, practical, and grounded in lived experience [5].

But the groundwork for this self-advocacy movement was laid long before ASAN, by autistic adults who spoke out when no one else was listening.

In 1993, activist Jim Sinclair delivered a speech that would become a touchstone for generations of autistic advocates. Titled “Don’t Mourn for Us,” it was addressed to the parents of autistic children who grieved the life they thought their child would have. Sinclair’s words were blunt, unflinching, and revolutionary:

“Autism is not something a person has, or a ‘shell’ that a person is trapped inside. There is no normal child hidden behind the autism. Autism is a way of being.”–Jim Sinclair, 1993  [19].

Sinclair called for a shift not just in how autism was treated, but in how it was understood. Not as a tragedy, not as a diagnosis to be whispered behind closed doors, but as a legitimate identity deserving of respect [19].

This idea of autism as identity, not deficiency sparked a wave of self-advocates who began blogging, organizing, speaking, and sharing their experiences. Some were verbal, some were not. Some had degrees, others had lived on the margins their whole lives. But all of them were telling a story that had rarely been told from the inside.

And in doing so, they offered something that had been missing: context.

What looks like “non-compliance” to a teacher might be sensory overload. What looks like “lack of empathy” might be a different way of processing. What seems like a lack of communication might actually be a different language entirely.

ASAN, Sinclair, and others weren’t asking for pity. They were asking for policy. For platforms. For presence.

And above all, for the right to tell their own story.

The first autism symbol was a green puzzle piece with a weeping child drawn inside it. It was created in 1963 by the UK’s National Autistic Society. At the time, autism was largely misunderstood and heavily medicalized, and the symbol reflected that confusion. A puzzle piece implied something was missing. The crying child sent the message that autism was inherently sorrowful [1].

That symbol stuck around for decades. It shifted colors, gained polish, and was eventually adopted by Autism Speaks in the United States. In their hands, it became a bright blue icon often paired with slogans like “until all the pieces fit.” The idea was to raise awareness. But the subtext was clear. Autism was a mystery. It made people incomplete. And it was something to be solved [1].

Symbols are rarely just decoration. They tell stories. They shape who is welcomed into a community and who is pushed to the margins. They decide who gets to be seen as whole.

The blue puzzle piece told a story that many autistic people didn’t recognize as their own. It focused on what others saw as broken rather than on how autistic people experienced their own lives. It became a shorthand for tragedy. For lost potential. For something to mourn [1].

In response, autistic communities began building a new visual language. They didn’t want to be represented by puzzles. They wanted to be represented by symbols that affirmed their existence [1].

One of the earliest alternatives to gain traction was the color red. In 2015, autistic advocates launched the #RedInstead campaign as a direct response to Autism Speaks’ “Light It Up Blue” campaign. While blue had been chosen without input from autistic people, red was selected by the community itself. It was bold, assertive, and political. It said, “We’re here, and we’re not broken” [10].

Soon after, the infinity symbol began appearing in rainbow gradients. Unlike the puzzle piece, the infinity symbol had no missing parts. It represented diversity, limitless potential, and the spectrum of neurodivergent experiences. Its use was popularized by neurodiversity advocates, including those affiliated with ASAN, and has since become one of the most widely accepted symbols of autism pride.

Some advocates began using gold as well. In the periodic table, the symbol for gold is “Au,” which also happens to be the beginning of the word “autism.” It was clever and affirming. Gold also suggested value and richness, directly opposing the deficit model that had dominated for so long.

Today, many autistic people and their allies use a combination of red, gold, and rainbow infinity symbols. The puzzle piece, once seen as a neutral marker of awareness, is now considered by many to be outdated or even offensive. Some autistic people still choose to reclaim it, reshaping its meaning to reflect their personal journey. But most have moved on [8].

This change in symbolism isn’t just about aesthetics. It’s about control. About who gets to define the narrative. And about whether that narrative centers pity or pride.

As autistic advocate and educator Dr. Devon Price has written many books, and there is a collection of quotes from his book Unmasking Autism: 

“Publicly identifying as disabled does mean being viewed as less competent—and less human—by many people.” [6].

These new symbols don’t shy away from complexity. They don’t pretend autism is easy. But they offer something the blue puzzle piece never could: dignity.

So when a teenager picks up a red pin instead of a blue one, they’re not just supporting awareness. They’re making a statement. They’re choosing a story where autistic people aren’t just discussed. They’re heard [8].

Symbols and stories might seem like soft power, the kind of thing that lives mostly on posters and social media banners. But in truth, they influence everything. The way a society talks about a group of people affects how it funds them, educates them, employs them, and includes them or doesn’t.

When the story of autism is rooted in fear, policies follow that logic. Schools focus on containment rather than support. Healthcare prioritizes diagnosis over accommodation. Job training programs try to sand down differences instead of recognizing strengths.

And when the media only shows autism through stereotypes, those narrow portrayals become the public’s baseline understanding. Viewers internalize what they see. Employers hesitate to hire. Teachers assume limitations. Lawmakers build systems around deficits instead of possibility.

That’s why the work of self-advocates has always been about more than just representation. It’s about power.

Since its founding, ASAN has worked at the intersection of storytelling and policy. They’ve helped rewrite training manuals for medical professionals. They’ve lobbied for alternatives to restraint and seclusion in schools. They’ve published policy toolkits to guide everything from inclusive classrooms to supported decision-making in adulthood.

One of ASAN’s major victories came through their advocacy around the FDA’s 2020 ban on electric shock devices used for behavior control. These devices were still being used at the Judge Rotenberg Center in Massachusetts, mostly on autistic and disabled students. The ban didn’t come out of nowhere. It was the result of years of pressure from survivors, families, and disability rights organizations, including ASAN. They gave testimony, submitted amicus briefs, and ensured that the people affected most were leading the charge [2].

ASAN has also pushed back against surveillance-heavy solutions like applied behavior analysis (ABA) practices that reward masking and compliance over self-expression. They argue that dignity should come before normalization. That the goal is not to make autistic people “indistinguishable from their peers” but to help them live authentic, supported lives.

These shifts are starting to show up in state-level legislation, in classroom accommodations, and in the language of civil rights. But culture moves slowly. And the media still plays catch-up.

For every Everything’s Gonna Be Okay, which offers rich and affirming autistic characters, there are still a dozen procedurals and dramas that treat autism as either a plot twist or a burden. Autistic adults, especially those who are nonspeaking, multiply disabled, or people of color, remain largely invisible.

Representation tends to favor the most palatable forms of autism: white, verbal, quirky but charming. Rarely do we see the full spectrum of the messiness, the brilliance, the joy, and the pain that coexist in real autistic lives.

When presidential candidate Robert F. Kennedy Jr. repeated outdated myths in 2024, framing autism rates as an “epidemic,” he leaned on the same story Autism Speaks had been telling for years. But this time, the backlash was immediate. Not just from doctors or journalists, but from autistic people themselves [16].

Dani Bowman and James B. Jones, both autistic cast members from Love on the Spectrum, took to interviews and social media to correct the record. They didn’t just defend themselves, they told a better story [18].

“I certainly must say that the idea that people with autism are incapable of driving vehicles, paying bills, or living independently is completely false. I’ve had my driver’s license for 20 years, since I was 17. I pay practically all of my own expenses, and I work a 40-hour-per-week job with benefits that I’ve held steadily since 2017. Other than the fact that I still live with my parents, I believe myself to be quite independent and self-sufficient..”–James B. Jones, 2024 [18].

They reminded the public that autism is not an anomaly to be feared. It is part of the human experience.

That reminder matters. When the story changes, so does the world.

A better narrative leads to better policy. Better policy leads to better lives. And for autistic people, that can mean the difference between isolation and inclusion. Between being pathologized or respected. Between being silenced or being heard.

The story is shifting, but it is far from finished. For every step forward, there are barriers that remain visible, others buried in systems that resist change.

Many large organizations have updated their language, softened their messaging, or made small gestures toward inclusion. Autism Speaks, for instance, now uses more person-first language and talks about support services rather than cures. But much of that change came only after intense public pressure. And autistic-led groups point out that updated language means little if the structure remains the same. Representation on boards is still rare. Funding priorities still lean toward research over support.

This gap between appearance and action is one of the biggest challenges ahead.

Media representation also continues to leave many people out. Most portrayals focus on white, cisgender, verbal men and boys. Women, trans and nonbinary people, non speaking individuals, and people of color are rarely centered. When they do appear, they are often side characters or one-dimensional. The full range of autistic experience is still waiting to be told.

The same is true in public policy. Many schools still rely on outdated behaviorist methods that reward masking over communication. Employers continue to screen out neurodivergent candidates for not fitting conventional norms. Housing and healthcare systems often make independence the gold standard, instead of building models that allow for interdependence and community-based living.

Autistic people who are multiply disabled face even greater hurdles. Their needs are frequently ignored by mainstream autism organizations and by the healthcare system. For some, basic access to education, communication tools, or personal care support remains out of reach.

But even as these barriers persist, so does progress.

Organizations like ASAN, AWN (Autistic Women and Nonbinary Network), and CommunicationFIRST are creating new frameworks for inclusion. They are publishing books, pushing legislation, training educators, and mentoring younger advocates. They are showing that leadership does not always look like a press conference. Sometimes it looks like peer mentoring, like a TikTok series explaining sensory needs, like a student asking for accommodations without shame.

Autistic youth are growing up with hashtags like #RedInstead and #NeurodivergentJoy. They are seeing people like themselves not just surviving, but thriving. They are speaking up earlier, questioning more, and finding community before internalized stigma takes hold.

And non-autistic allies are learning how to listen better. Parents are seeking out resources written by autistic adults. Teachers are rethinking discipline systems that punish differences. Employers are asking not how to “fix” someone, but how to accommodate them meaningfully.

That shift is slow and uneven, but it is happening.

The challenge now is to keep pushing for deeper, systemic change while remembering who must remain at the center. Not experts or spokespeople who talk over others. Not glossy campaigns. The people who live this story every day in silence, in resistance, in joy, in complexity.

They deserve more than awareness. They deserve action.

When I think about that library display I built at fifteen, I realize now it was a beginning. A moment where I stepped into a story that didn’t quite make sense yet, but felt like it needed telling. I didn’t have all the languages then. I didn’t know about Jim Sinclair or Ari Ne’eman or how the history of the symbols like the puzzle piece. I just knew red meant something different. It meant someone had drawn a line and said, this time, we speak for ourselves.

That instinct to rewrite, to resist, to reframe lives at the heart of the autistic self-advocacy movement.

Autistic people are not asking for approval or permission. They are not waiting to be interpreted. They are building communities, writing policy, publishing memoirs, acting in television shows, and demanding futures that include their voices from the start.

They are telling the world that autism is not a problem to be solved. It is a way of being in the world. A mind that patterns differently. A body that moves and senses and expresses in ways that do not need fixing.

That shift in story matters.

Because stories shape more than public opinion. They shape legislation. They shape classrooms. They shape the quiet moments: the diagnosis conversation in a doctor’s office, the guidance counselor’s advice, the assumptions a hiring manager makes before an interview begins.

A better story creates room. It makes space for complexity. It tells the truth without shame.

That story is being told now, in real time. Not by charities speaking over the people they claim to help, but by autistic people who have always been in families, in schools, in offices, in art, in science, in joy, and in grief. They are reclaiming the narrative one blog, one protest, one policy brief, one red pin at a time.

And maybe somewhere, a teenager building a library display doesn’t have to explain why red instead. Maybe they just get to make it. Maybe someone else sees it and feels a flicker of recognition. Maybe it changes something.

I didn’t have a word for that feeling then. I just knew something about those stories felt familiar. Like they were circling something true about the way I saw the world, and maybe, finally, I could see myself in it too.

That’s how stories work when they’re true. They don’t solve everything. But they give us something solid to stand on.

Not a puzzle piece.

Something whole.

Sources

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