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autism

Mental Health

What it's like having 'face blindness' and not recognizing people you've known for years

I've lived with it my whole life. Here are 5 things I've tried that help.

Photo link: Canva

A woman only sees half her face.

If you know, you know. Face blindness, or as medical professionals call it, prosopagnosia, can be frustrating even in its mildest form. For me, it's the constant disappointment I see on people's faces when I don't register who they are. One time, I didn't identify my own comedy agent at the Laugh Factory. Another more egregious time, I didn't recognize my boyfriend of three years at the mall. (I didn't expect to see him and he was wearing a hat. He never wears hats!)

I used to have a joke that, to me, everyone looks like some version of actor Tobey Maguire no matter their gender, race, or height. I would be awful picking out a suspect in a police lineup, because I'd just keep saying, "Um, he was Spiderman, I think?"

The topic of face blindness isn't new. In neurologist Oliver Sacks's book The Man Who Mistook His Wife for a Hat, he writes, among many things, about a case study in which someone has a much more complex, severe condition processing stimuli called visual agnosia. Sacks discusses the neurological theories behind the condition, even adding in philosophical and Freudian explanations.

- Neurologist Oliver Sacks discusses what it's like to have prosopagnosia. www.youtube.com, CNN

The condition is actually somewhat common. According to Neuroscience News, 1 in 50 people have mild face blindness or "developmental prosopagnosia."

In her recent piece "Even mild face blindness can cause serious difficulties in daily life – new study," for The Conversation, psychologist Judith Lowes asks, "Have you ever been ignored by someone you knew when you bumped into them in the street or at an event? If so, you probably thought they were being rude. But they might have face blindness–a condition officially known as developmental prosopagnosia."

Her findings were fascinating. "In a new study my colleagues and I conducted, 29 adults with face blindness revealed the daily challenges they face. Ten of the participants said they could not reliably recognise immediate family members, and 12 couldn’t recognise closest friends in out-of-context or unexpected encounters. Yet many felt it was socially difficult to admit these struggles."

-People talk about their experience with face blindness. www.youtube.com, The New York Times

The study concludes prosopagnosia might be a form of neurodivergence, and somewhere on the autism/ADHD spectrum. She writes that recognizing face blindness as a "form of neurodivergence isn’t just about awareness, it’s about dignity, inclusion, and making everyday life easier for thousands of people."

But, for my fellow face-blind folks, there's hope and help. On the subreddit r/Prosopagnosia, an OP asks "Strategies for recognizing people?" Their more specific question is "How do y’all compensate for your face blindness?" The comments section bursts with ideas.

Come from the assumption that you know everyone

A few people suggest greeting people with "good to see you," instead of "nice to meet you," no matter what. I do this and while it seems strange at first, it's a way of faking it until you make it. Then if it's a short conversation, no harm, no foul.

Learn to rely on vocal cues

If, let's say using the last example, you need to buy more time. Listen closely to a person's voice. For me, my auditory memory is intact, so if I can just get a few seconds with vocal cues, my recognition sensors set in.

Be honest and open about the condition

Other Redditors recommend a more honest approach. One shares, "I’m open about it. I say something like 'I’m so sorry, I have face blindness, can you remind me how we know each other?' And people are usually really kind about it. The only time it’s been truly awkward for me was when the response was 'Ten years of friendship?!' (She’d changed her very distinctive hair.)"

Look for specific traits to memorize

This has truly helped me. When I'm meeting someone, especially someone I assume I'll see again, I try to find one thing on their face I can remember. A beauty mark on their cheek or a tattoo on their arm. Then, personally, I repeat it in my head: "Mike, tattoo, Mike, tattoo." Another Redditor advised to "look for scars." Same idea—find something on them that won't likely change and commit it to the space in your brain where the memory of their face would have gone.

Subtly ask for more context

This is a big one. Like many of us, it becomes kind of a game of fishing for information without awkwardly giving yourself away. I'll often ask, "When was the last time I saw you?" And if they say, "At our high school reunion of course," then boom—that's information! Once I have just a few pieces of the face blindness jigsaw puzzle, I can piece it together pretty quickly. (And then I often overcompensate once I realize who they are. "Oh yeah! You were wearing the cutest pink dress! How's Steve? Still living in Milwaukee?")

As one commenter put it, "Bluffing and hoping for some context from the conversation's clues."

face blindness clues, tattoo, body markings, memory Tattoo artist with a canine assistant creates colorful ink. Giphy

While many in this and other threads online discuss the anxiety and embarrassment that can come as a result of this condition, it is not all that uncommon. And if we approach it from the neurodivergence standpoint, as Lowes proposes, it might make it easier to discuss and give grace to ourselves and others.

@kylephilippi/TikTok

“Today’s her birthday, and we’re pretending like it’s just another day."

Kid’s birthdays are both lovely moments of celebration, and potential sources of stress for any parent, for various reasons. For dad Kyle Philippi (whom we’ve previously covered for dressing up as Jafar to cure his friend of an irrational phobia), his daughter’s 10th birthday was particularly full of anguish—since he didn’t tell her it actually was her birthday.

In a video posted to his TikTok that amassed close to 3 million views, the concerned dad shared his unique plight that brought him to this unusual decision: his daughter’s birthday falls on Jan 2, over winter break, meaning most kids wouldn’t be able to attend her birthday party. Two years prior, the Philippi found this out the hard way, when they tried to throw a party on the day, and no one showed.

“She was devastated,” Philippi let out through a sigh.

@kylephilippi

We’re about 60/40 on whether this was a good idea… #birthday #parenting #parentingtips #autism #autismawareness #autismacceptance #auditoryprocessingdisorder #surprisebirthday #birthdayparty

Then last year, they tried a different approach. Instead of a big social gathering on Jan 2, they had a more intimate environment of just the family and one close friend, followed by a proper party once winter break was finished. At this point Philippi explained that his daughter is on the spectrum and had auditory processing disorder—so even though she had fun at both events, she still couldn’t understand why her friend couldn’t show up on her actual birthday, and was still disappointed. That’s never what any parent wants for their kid.

To make matters more sensitive, Philippi shared that his daughter was beginning to not be invited to other classmates' parties, and suspected that part of why she yearns to have a party with all her friends there was because “she knows she’s not getting to go to everyone else’s birthday.”

Hence why Philippi and his wife decided to try something new by simply not acknowledging the birthday until they can do a party with his daughter’s school friends. Understandably, though the choice was made with the best of intentions, when Jan 2 came, there were tons of conflicting feelings.

Photo credit: Canva

“I don’t know if we made the right decision. But here we are,” Philippi shared. “Today’s her birthday, and we’re pretending like it’s just another day…and it’s killing us.”

Down in the comments people—especially those with special needs kids, or were autistics themselves—were quick to reassure Philippi that he made a tough, but right call.

“As an autistic person who struggles with birthdays, you’re doing the right thing. it’s a little unconventional, but so are kids like us!! keep it up,” one person wrote.

Another added, “these ‘decisions’ are so hard but you are doing great by taking it all into consideration and trying to do what will help her feel great on her birthday.”

It seems the real thing worth noting here is that Philippi and his wife are trying to make their kid’s birthday the best it can be for her, and that’s truly admirable. Odds are nearly every parent can relate to this on some level. And for parents with neurodivergent kiddos, that can often mean navigating uncharted territory. Maybe they’ll try a different approach next year. Maybe not. What matters is they’re trying.

And from the looks of it, the actual birthday wasn’t a total wash. In a follow up video, we see that Philippi’s daughter got her favorite chicken wings for dinner, and got to plan her upcoming birthday…which will apparently be Raggedy Ann themed.

@kylephilippi

Replying to @mamamcsorley1 She ate her favorite meal today and we continued to plan out her ultimate birthday party in 9 days 🙂 #birthday #parenting #parentingtips #autism #autismawareness #autismacceptance #auditoryprocessingdisorder #surprisebirthday #birthdayparty

Naturally, Philippi will be going as Raggedy Andy, per his daughter's request.

This article originally appeared in January.

Parenting

Parents build train-themed tiny house in backyard for 21-year-old son with autism

"His own space, his own choices and agency. That’s so regulating!"

bobbystinyhouseworld/TikTok

Parents build 21-year-old autistic son a tiny home for independent living.

Tiny houses are an incredible living option. Compact yet complete with everything needed to live a full, independent life, living in a tiny home has been a game changer for Bobby, an autistic 21-year-old in West Virginia whose parents built him his own train-themed tiny home in their backyard.

Bobby, who has intellectual autism, a seizure disorder, and OCD, has been living in the home for over nine months. His parents have documented his tiny home living on TikTok, where they share what life is like for Bobby and the positive impact it has had in his life and theirs.

"Our solution to give some independence to our 20 year old son with profound autism is this backyard tiny home," his mother wrote in the video.

@bobbystinyhouseworld

Our solution to give some independence to our 20 year old son with profound autism is this backyard tiny home. He’s been living here for over 4 months and it’s going better than we could have ever imagined! #autism #profoundautism #autismadult #autismparenting #independentliving #tinyhouse

In the video, she gives a full tour of the exterior and interior of Bobby's tiny home. It is a 12 foot by 30 foot home that has enabled Bobby more freedom and independence.

But it's also been a game changer for her life as the parent of a child with autism as well. In another video, she explained the profound impact Bobby's tiny house move has had. "Our situation was dire. OCD had taken over every part of our life," she shared in a video explaining why they built Bobby his tiny house. "I told my husband, 'I'm done. I cannot do this,'" adding that their lives had become incredibly chaotic when the tiny house idea just came to her.

@bobbystinyhouseworld

#autism #profoundautism #autismadult #autismparenting #independentliving #tinyhouse

She continued by sharing, "I've let go of the control I've needed to have over his life for the past 20 years...from what I'm getting from his reaction of living on his own in that tiny home is that I think that control was so overwhelming for him. I know it was overwhelming for me. I didn't know how to deal with any of it."

On top of helping ease her struggles with control, the tiny house has also helped Bobby immensely. "Bobby has been living in his tiny house for 9 months. It’s been 9 months with no meltdowns, no aggression, 9 months of him eating new foods with ease. He’s happier, my husband and I are happier. By far, the best decision we’ve ever made!" she wrote in the caption of another video.

Although Bobby now has his own space, she notes that his tiny home doesn't have everything a normal "house" would, including things like a stove, a washer and dryer to do laundry, or a TV. She also adds that having security cameras inside and outside of the home has been vital to making sure Bobby is safe in his new place.

@bobbystinyhouseworld

He has his own ice maker, but prefers ours 🤷🏻‍♀️🤣 #autism #profoundautism #autismparents #autismparenting #ocd #specialneeds #autismadult #independentliving #tinyhouse

And they continue to work on daily living skills, like taking out the garbage. "Working on daily living skills has been so much easier to do in his tiny house. It’s his space and he’s much more cooperative in doing these tasks," she wrote.

Bobby's viewers absolutely love following his tiny home journey and personal growth through his independent living.

"As a momma of an autistic son, this melts my heart," one wrote.

"This is a huge accomplishment for an adult on the spectrum! Giving him independence and his own space is amazing!!!❤️" said another.

Another viewer wrote, "His own space, his own choices and agency. That’s so regulating!"


Community

Autistic 5-year-old says getting to know Harley Davidson bikers brought him out of his shell

He connects with motorcycle riders by giving them custom hog stickers.

mamadontbreak/Instagram

Young boy with autism meets bikers to practice socializing.

Young boys are are often obsessed with motorcycles—especially Nathan Archibeque, a 5-year-old autistic boy who lives in Washington state. A biker enthusiast, Nathan (whose nickname is "Cookie Monster") has turned his love for their loud engines and speed into a way to practice socializing and speaking with the help of his mom, Shelbie.

Shelbie, a single mom, is Nathan's biggest advocate and has documented his autism journey and love for motorcycles on social media (@mamadontbreak). Whenever they see a motorcyclist while out and about, they use it as an opportunity for Nathan to connect and practice interacting with others.

"My five year old son has autism and used to not talk to people. He gives out stickers to bikes he likes and Harley Davidson made him some custom ones to hand out and help him socialize," she wrote in one post's caption.

In the video, Nathan approaches two bikers who he gifts stickers to. The bikers take off their helmets and speak with him, thanking him for the sticker and giving him a chance to practice shaking hands. The bikers also have Nathan help them put the stickers proudly on their bikes. "Now when I do wheelies, everybody will see it!" one biker says.

The interactions have helped Nathan's communication skills greatly improve. "If you have a bike, he’ll talk to you. A year ago, he barely talked to anyone – and now it’s like if you have a bike he’ll talk your ear off, ask how long have you been riding, what you ride," Shelbie told Fox6 in 2024.

Shelbie documents the interactions, which she notes have helped restore her faith in humanity. "Small acts of kindness go so far, and create a ripple throughout our community that we just can’t get enough of. I still can’t get over how far Cookie Monster has come with his social interaction, and he helps restore my faith in humanity every single day 💙," she wrote in another post.

In another video, Shelbie explained just how Harley Davidson connected with her and Nathan to design a sticker just for them. "When Cookie Monster was 3, a biker gave him a sticker. He then wanted to start giving out his own stickers, so we made the original Cookie Monster riding a motorcycle stickers to hand out," she explained.

Shelbie made a video about it, which made its way to Harley Davidson. "Harley Davidson saw it, and they invited us to their museum," Nathan said in the video. To get to the museum in Milwaukee, Nathan sold lemonade to raise funds. They made it, and Nathan took his first airplane ride.

"While we were at the Museum, they gifted Cookie Monster with a few bundles of these custom stickers with our username and their logo. Truly an honor to receive!" Shelbie added. The kind gift inspired Nathan to design his own motorcycle merch called Moto Monsters Awesometism to raise awareness about autism.