14 things not to say to autistic people, according to advocates

·9 min read
A boy sitting and speaking using his hands talking to a girl.
An autistic boy speaks to his non-autistic sister.Seth Wenig/AP Images
  • Autism Awareness Month — April — is a time to amplify autistic voices.

  • Since so many people are on the broad spectrum, there are misconceptions about autism.

  • Insider spoke to advocates who shared stereotypical things they wish people would stop saying.

Autism spectrum disorder (ASD) is a developmental disability that may affect how people behave, communicate, interact, and learn, according to the CDC. However, advocates say that with such a broad definition, autism is often misunderstood. This Autism Awareness Month, Insider spoke with eight autistic advocates who shared the things they wish people didn't constantly say to them.

The spectrum is fluid, so many autistic people fit in more than one place. Most of the people Insider spoke to don't like to use functioning labels or rank severity, such as "high-functioning" or "severe," because a person's strengths and struggles change from one situation to another or one year to the next. Some autistic people have multiple conditions, which can also affect their abilities at different points.

Additionally, there is a debate within the community on whether to use identity-first language ("I'm an autistic person") or person-first language ("I'm a person with autism"). All the interviewees preferred to use identity-first language. Each person also emphasized that they did not intend to represent the entire autistic community when sharing their experiences.

Here are 14 things they wish people would stop saying.

'You don't look like you have autism'

People have told Daniel M. Jones, an author who shares misconceptions about the autistic community on his YouTube channel, "The Aspie World," that he can't possibly be autistic because he has piercings and tattoos.

"All they see is a Sheldon Cooper-type autistic person – this white dude, super good at math, socially awkward, and doesn't talk much, or a kid. That's it, those are your two examples," Jones said.

A woman leaning against a tree smiling in a coat and sweater.
Leanne Libas.Courtesy of Leanne Libas

Young, white cisgender boys are most frequently diagnosed because they were the basis for early autism research, according to studies cited by Duke University, yet anyone can be autistic.

Leanne Libas, an autistic advocate for disability rights and speaker for the National Alliance on Mental Health, pointed out that stimming – repetitive movements or noises to help manage emotions – commonly seen as hand-clapping or petting objects, is not the be-all-end-all of "looking" autistic, either.

"The autistic community is filled with a lot of beautiful people," she said.

'But you're so high functioning'

Haley Moss, an autistic advocate, speaker, author, and attorney, feels that comments like "I never would've known if you didn't tell me" are backhanded compliments.

"Either they're saying that I'm really good at masking or they have a preconceived notion of what autism is and I don't fit it," she said.

A woman with bangs and long hair smiling in a green floral shirt.
Haley Moss.Courtesy of Haley Moss

Masking is a survival strategy where people adapt to fit in and seem neurotypical, rather than neurodivergent (those who experience and interact with the world around them in different ways).

For example, Raven-Derose Wright, a college student who tries to break stigmas on her TikTok page @confidencewithrae, was diagnosed with Asperger's at 11, yet she didn't know it fell under the autism spectrum until recently. She told Insider that the unknown prompted her to try to mask and act "normal" to fit in, rather than accepting her true self, which she recently has.

'Oh, I'm so sorry'

Many of the advocates we spoke to said they don't feel bad about their diagnosis and don't want pity when they disclose it.

"I'm telling you because I want to be proactive, not have misunderstandings, might need accommodations or support, or am proud and it's a fun fact I want to share," said Lyric, who created the blog Neurodivergent Rebel to share resources about autism with their added perspective of being part of the LGBTQIA+ community.

Matt Haberer, an IT engineering manager and one half of "The Chronic Couple" podcast, said he doesn't like when people refer to him as "living with autism," as if being autistic is automatically negative or a burden.

"It is not something that I carry around in a bag with me. It's something that makes me who I am and is an intrinsic part of my being," he said.

Similarly, James Ward-Sinclair, the creator of the blog Autistic and Unapologetic, doesn't like that people have turned "being autistic" into an insult.

"People see autism as a problem to overcome, but it's not a problem and it's not something to overcome," he said.

'Why would you want to put a label like autism on yourself?'

A man and woman smiling in a selfie.
Matt and Brandy Haberer.Courtesy of Brandy Haberer.

Most advocates Insider spoke to said that while they might not want to disclose where they land on the spectrum or talk in terms of severity, they're proud of being autistic and sharing their experiences.

"That label quite literally saved my life," Brandy Haberer, Matt's partner, a singer, activist, and co-host on "The Chronic Couple," said. "It explained so many things that I would beat myself up for. If putting a label helps you and enriches your life somehow then it is extremely important."

Comparing them to an autistic child you know

Jones and Ward-Sinclair said that when they disclose their diagnoses, people often say something like, "My friend's kid is on the spectrum. You look nothing like him!" which they find to be generalizing.

Wright and Lyric said people make assumptions that they're infantile even though they're adults, or make statements that they're nothing like their autistic child. Lyric said people who write this online have no idea who they are as a person or how they acted as a child, so they find those claims to be too personal to respond to.

Libas added, "We all grow up and experience our own things. I'm not gonna be the same person I was when I was 4 years old or 11 years ago when I got my diagnosis. We constantly evolve and change."

Using the term 'special needs'

While autistic people may need accommodations in daily life, everyone has needs.

"I do not think that my needs are special. I just think they're human," Moss said. Regarding love, career satisfaction, and being independent, she said these wants and needs aren't exceptional.

Libas said she's also not a fan of euphemisms like "special needs" or "handicapped" because she doesn't think the word "disability" should be avoided.

Quoting 'Rain Man' or asking if they're good at math

A man smiling in a sweater and jacket in front of a house.
James Ward-Sinclair.Courtesy of James Ward-Sinclair.

In the 1988 film "Rain Man," Dustin Hoffman plays a man with autism and savant syndrome, a rare condition in someone with mental disabilities who demonstrates incredible abilities. The man the movie was based on, Kim Peek, had savant syndrome but not autism, so Ward-Sinclair said that when people say "Rain Man" quotes to him, it's exhausting and unrelated to his experience.

While many autistic people have a splinter skill — an ability to do one task exceptionally well — not all do. And while math is a common one because of its patterns and repetition, it's not the only one. Autistic people excel in other areas too, including art, makeup, film, reading, psychology, and building things with their hands.

Calling them 'weird' or 'different' or saying to 'just act more normal'

Wright said that before she and others understood that she is on the spectrum, she would be told to "just act more normal" or "just verbalize your needs." She said that beyond this being harmful, it was very unhelpful in times when she needed support.

A woman in a pink dress smiling.
Raven-Derose Wright.Courtesy of Raven-Derose Wright

'How on earth are you doing this? You're autistic!'

Jones said people don't realize there are workarounds and tools for achieving different tasks and successes. He cited an analogy he likes to use.

"Imagine you're a wheelchair user and you're from Ohio and you meet somebody in a Florida resort and they look at you and say, 'How did you get here? Your legs don't work!'" Jones said.

For Moss, there's a litmus test for asking questions: "If I would not ask this of a non-disabled person, I probably shouldn't be asking this."

'Can you have sex?' and 'Can you fall in love?'

A man with blue dyed short hair, facial hair, and earrings.
Daniel M. Jones.Courtesy of Daniel M. Jones

Jones, a father, finds these questions mind-boggling.

"People think that because you have a neurological condition and you lack some empathy in certain areas, you may lack the ability to feel emotional attachments to people in the form of love," he said. "Love doesn't have a logical reason or a neurological pathway; it's something that just happens."

'Autism is so trendy at the moment'

Ward-Sinclair has found people say this because autistic people and characters are being included more frequently in the media.

Comments like this sound like the person will be ready to stop caring if autism becomes "less trendy," he said, and he wants them to know having autism isn't something he has to be cool or gain attention.

"It's not the flavor of the week. It's not going anywhere," he said.

Diminishing someone's diagnosis

The Haberers have experienced people dismissing their diagnoses simply because they have managerial roles in full-time jobs.

When it comes to disclosing her diagnosis, Wright said she always tries to deconstruct people's viewpoints. As a young person of color, she said she finds it most difficult to explain autism to older generations and people of color.

"They have preconceived ideas of what it means to have a disability. They think it means that you're weak, need to be in the hospital, or that it's a bad thing," Wright said.

Jones said he has also found that some people with far-right views will tell him autism doesn't exist or that ADHD is a made-up excuse to get out of situations or act a certain way.

'Why are you complaining so much? It's not that bad.'

A person smiling with green dyed side bangs, a large hat, and leather jacket.
Lyric, the Neurodivergent Rebel.Courtesy of Lyric

Lyric finds this to be invalidating when they speak up about something that's making them uncomfortable.

"Something that you could deal with a day before can suddenly feel overwhelming when your brain resources are low," they said.

They said people will then hold something against autistic people if they've never needed (or felt comfortable) to express an issue before.

'You're such an inspiration'

"You can call me inspiring if I broke barriers, but don't call me inspiring just because I am autistic or because I'm talking to you," Libas said. "I don't want to be celebrated for doing something as simple as talking or breathing or being in someone's presence."

She's just doing what her non-disabled peers are doing, she said.

Read the original article on Insider