Lie, deny, sigh, these have been my social coping skills. Trying to figure out a better way to go through life as a prosopagnosic, aka, faceblind person.
Brad Duchaine is the researcher I did testing with when he was at the University College of London.
Please click on titel to take you to the Minnesota Daily website where this article was published.
University lab looking to crack face blindness
The Yonas Visual Perception Lab is seeking treatments and new methods of diagnosis.
ByAnne Millerbernd [3] October 24, 2013 (3 weeks ago)
Stephanie Chase used to recognize some of her Valleyfair coworkers by their ponytails. She thought nothing of it until a male coworker had to consistently remind her of who he was.
Then Chase realized something wasn’t right. She then happened upon a description of prosopagnosia, also known as face blindness, and she discovered she has the disorder.
People with face blindness have difficulty recognizing faces, sometimes even their own. A team of University researchers is working to find the best methods of diagnoses and treatments for the disorder.
Albert Yonas leads the the Yonas Visual Perception Lab, where Chase is a research assistant.
“Most people don’t know the problem exists; some people grow up to think everybody’s got the problem,” Yonas said. “Some people just have unhappy lives,”
He said about 2 to 2.5 percent of people worldwide have face blindness.
Vanessa Adamson, the Yonas lab’s manager, said the severity of face blindness varies on a case-by-case basis. Someone could forget a face moments after it’s gone or struggle to differentiate any two faces. In extreme cases, she said, someone with face blindness can look at a picture of themselves without recognizing it’s them.
Chase said people sometimes think she’s “snubbing” them when she doesn’t recognize them and she hesitates to tell others about her face blindness.
“I’ll totally remember a conversation I had with them, just not their face,” she said. “I think that’s a hard distinction for people to make, especially at first.”
There are two different types of face blindness, acquired and developed, Yonas said. Generally, those with acquired face blindness have experienced brain damage and lost the ability to recognize familiar faces, he said.
The Yonas Lab is focusing its research on developmental face blindness,
specifically in children.
Developmental face blindness is likely caused by development issues in the region of the brain responsible for face recognition, said University research fellow Kirsten Dalrymple.
“We have machinery in our brains that is allocated for face recognition alone,” she said. “If that machinery doesn’t develop, you’re not going to be able to do that specialized process.”
In the Yonas Lab, researchers test children for face blindness by asking them to memorize what three pictures of faces look like, Dalrymple said.
Researchers then present the children with another set of three faces, one from the previous set, and ask them to identify the face they’ve seen before.
But face blindness is a difficult disorder to identify, even for those who have it, Dalrymple said. Many people with the disorder use cues like hair, skin color and clothes instead of faces to remember people.
Those with developmental face blindness often spend their lives unaware that they have the disorder, Dalrymple said. They think everyone grows up “learning who people are” instead of being able to identify their faces, she said.
There are indications that face blindness is a genetic disorder, Dalrymple said, but it hasn’t been linked to one gene yet.
Brad Duchaine, an associate professor in the Department of Psychological and Brain Sciences at Dartmouth, is also researching face blindness, but he focuses on its acquired form.
Duchaine said there are two different stages in face processing — the stage where a face is seen and the stage where it is remembered and identified as a person.
He believes most instances of face blindness are caused by visual perception problems, though this can be difficult to recognize for people with the
disorder, he said.
“It feels like a memory problem because when you’re looking at a face for the first time, you have no idea what it should be looking like,” Duchaine said. “But then when you fail to recognize it again, it feels like a memory
failure.”
He said about 2 to 2.5 percent of people worldwide have face blindness.
Vanessa Adamson, the Yonas lab’s manager, said the severity of face blindness varies on a case-by-case basis. Someone could forget a face moments after it’s gone or struggle to differentiate any two faces. In extreme cases, she said, someone with face blindness can look at a picture of themselves without recognizing it’s them.
Chase said people sometimes think she’s “snubbing” them when she doesn’t recognize them and she hesitates to tell others about her face blindness.
“I’ll totally remember a conversation I had with them, just not their face,” she said. “I think that’s a hard distinction for people to make, especially at first.”
There are two different types of face blindness, acquired and developed, Yonas said. Generally, those with acquired face blindness have experienced brain damage and lost the ability to recognize familiar faces, he said.
The Yonas Lab is focusing its research on developmental face blindness,
specifically in children.
Developmental face blindness is likely caused by development issues in the region of the brain responsible for face recognition, said University research fellow Kirsten Dalrymple.
“We have machinery in our brains that is allocated for face recognition alone,” she said. “If that machinery doesn’t develop, you’re not going to be able to do that specialized process.”
In the Yonas Lab, researchers test children for face blindness by asking them to memorize what three pictures of faces look like, Dalrymple said.
Researchers then present the children with another set of three faces, one from the previous set, and ask them to identify the face they’ve seen before.
But face blindness is a difficult disorder to identify, even for those who have it, Dalrymple said. Many people with the disorder use cues like hair, skin color and clothes instead of faces to remember people.
Those with developmental face blindness often spend their lives unaware that they have the disorder, Dalrymple said. They think everyone grows up “learning who people are” instead of being able to identify their faces, she said.
There are indications that face blindness is a genetic disorder, Dalrymple said, but it hasn’t been linked to one gene yet.
Brad Duchaine, an associate professor in the Department of Psychological and Brain Sciences at Dartmouth, is also researching face blindness, but he focuses on its acquired form.
Duchaine said there are two different stages in face processing — the stage where a face is seen and the stage where it is remembered and identified as a person.
He believes most instances of face blindness are caused by visual perception problems, though this can be difficult to recognize for people with the
disorder, he said.
“It feels like a memory problem because when you’re looking at a face for the first time, you have no idea what it should be looking like,” Duchaine said. “But then when you fail to recognize it again, it feels like a memory
failure.”
Prosopagnosia is a condition that can make it impossible to recognize the faces of others, from friends to movie characters to parents. To varying degrees, it affects about two percent of people.
Deux hommes en pied by Edgar Degas (Renaud Camus/flickr)Jacob Hodes lies on the couch watching old reruns on television. It’s his roommate Sonny Singh’s turn to cook dinner tonight, and their Brooklyn apartment fills with the aroma of Indian food.
As Singh bangs around in the kitchen, Hodes talks about a party he attended recently. “CUNY J-School parties are the worst, I don’t recognize anyone,” he says.
Then he guffaws and glances back at Singh. “I don’t think I could ever miss you on the street, man.”
Singh runs his fingers through his long beard. “Yeah, the turban makes it difficult to forget, huh? Unless, of course it was Sikh Day Parade.”
There’s a knock on the door and Singh lets in a young woman.
“Hey,” she says.
Hodes pretends not to notice. He sinks deeper into the couch and keeps his eyes on the television. She walks into the kitchen, unaffected, and chats animatedly with Singh.
Hodes’ other roommates come out and embrace the woman. “I think I’m supposed to know who she is,” Hodes whispers once she’s out of sight. “ But I don’t recognize her at all.”
Prosopagnosia, or “face blindness,” the disorder that has plagued Hodes since he was a child, is the inability to recognize faces that should be familiar. Some patients’ impairment influences only the recognition of faces; others find their deficit extends to the recognition of other objects such as cars and animals.
While anyone can have trouble recognizing faces and names, prosopagnosics can’t even identify their own parents and relatives. They rely on non-facial information like hair color, gait, and tone of voice to distinguish people.
Prosopagnosics often complain that they have trouble following movies or television shows, because they cannot recognize characters and keep up with the plot.
Many also report problems with other aspects of face processing: They find it difficult to judge age or gender, recognize emotional expressions, or follow the direction of a person’s gaze. A substantial portion report navigational difficulties, because their sense of direction is impaired.
Though researchers have sought cures, no therapies have demonstrated lasting improvements.
“While there have been transient benefits, there has been nothing else that has made a real impact,” says Garga Chatterjee, currently pursuing doctoral research in prosopagnosia at Harvard.
There are only about 100 documented cases of prosopagnosia in the worldwide medical literature. Yet scientists at the Prosopagnosia Research Centers at Dartmouth College, Harvard University and University College London are questioning whether the condition is actually that uncommon. “2.5 percent of the world’s population has the disorder. That’s one person in every 50. That is not rare at all,” Chatterjee says.
In 2004, researchers at the Institute for Human Genetics in Germany gave 576 biology students a prosopagnosia screening questionnaire and found that nearly two percent reported face blindness symptoms. Scientists at the Prosopagnosia Center in 2006 also reported, after testing 1600 individuals, that about two percent of the general population may have prosopagnosia.
***
In 2007, Glenn Alperin was flying from Atlanta to Boston. “I was reading a newspaper when this man came up to me and shook my hand. He went down the aisle shaking hands with all of the passengers,” Alperin recalls.
“I waited until he was at a safe distance and turned to the man sitting next to me and asked him who that was. The guy looked at me, horrified and said, ‘That was Jimmy Carter!’”
Dressed in a fishing hat and an oversized green jacket, Alperin has just finished his session at a day treatment center in Cambridge, Massachusetts
He makes his way to the subway station, carefully deliberating which train to take to Brookline, where he will tutor his first student of the day.
“I don’t look at people until I am spoken to,” says Alperin, who’s had prosopagnosia since infancy. He provides an interesting analogy: “Most people take a picture with their brain and store and develop the film. I take the picture, but throw the film in the trash immediately.”
Alperin’s mother Peggy recalls the time they discovered the disorder. “I remember we went somewhere and my eldest son’s voice had just started to crack and Glenn was having trouble telling his brothers apart,” she says. She then did some research, and doctors confirmed that Alperin did in fact suffer from prosopagnosia.
Peggy did her best to support Alperin after they diagnosed the disorder. She put alarms all over the house and if reporters ever visited his school, she wouldn’t allow his photograph to appear in the newspaper. She constantly fears that people may take advantage of his condition.
“I can’t say anything now, because he is a full grown adult, but he tutors and goes to people’s houses he doesn’t even know. God forbid if something were to happen, he wouldn’t even be able to identify the person,” she says. “I am a gardener and it is only now, at the age of 63, that I have allowed my work to appear in shows. When Glenn was a child, I was so concerned for his safety, I never showed my work to anyone.”
Researchers say prosopagnosia isn’t a unitary disorder, meaning that it is different for each patient. “Each prosopagnosic’s description of their experiences will be different,” Chatterjee says.
Most patients develop strategies for tackling the problem. They may note carefully the clothes someone is wearing, ask relatives to always wear a particular distinctive item, or learn how to initiate and maintain conversations while they figure out whom they are talking to. But such strategies aren’t completely effective.
Alperin’s mother would often test him as a child, hoping that would sharpen his mind. “My mother would keep changing her hairstyle and it would frustrate me because I couldn’t recognize her,” he says. “But now that both of us are older and she knows there’s no real cure for my disorder, she just ties her hair at the nape of her neck with one highlight running through her bun and that’s how I can identify her.”
Alperin grew up on Boston’s North Shore with two elder brothers who did their best to help him out. But with their similar features and flaming red hair he still had trouble telling them apart. Yet, he says, briskly walking through Brookline, his family was incredibly supportive.
“I would tell him, at his wedding, I would have to get the word ‘wife’ monogrammed on his wife’s dress, so he wouldn’t kiss the wrong girl,” Peggy recalls, laughing. “I had to prepare him to deal with the disorder and I wanted him to have a sense of humor about it.”
His father, who died when Glenn was 16, spoke little. “He never mentioned anything about my disorder,” he says. “It was only later that I learned that he was worried I would forget him. But I could never do that.”
Alperin rates the severity of his prosopagnosia a 9 out of 10. He finds it difficult even to recognize himself in a mirror. “I don’t like to take the time to see what I actually look like now, because I don’t care,” he says. At age 34, he is tall and lanky and keeps a long, red beard he constantly plays with.
“That drives me crazy,” his mother says. She has been trying to get him to shave off his beard for a while now. “Although I get mad at him, I feel that the long beard is the only way he can recognize himself. His coordination is not great, so shaving too, must be trouble for him.”
The stranger a person looks, the more Alperin is attracted to him or her.
“I can recognize people that wear outrageous clothes or have different-colored hair a lot easier than those that blend into the crowd,” he says. “I like to believe I am attracted to people’s personalities. I can’t be attracted to the way they look.”
While some prosopagnosics feel socially inept, Alperin tries to be outgoing. He stops to orders a cinnamon roll and strawberry flavored milk at the Dunkin Donuts in Brookline, which he frequents regularly. “They all know me here, but I don’t know them,” he jokes. When the cashier asks if he wants anything else, he grins, “Yes, a million dollars would be nice, thank you.” He’s fighting the most frustrating consequence of prosopagnosia: The tendency to drive someone into isolation.
“It’s far easier for me to be alone than to try and navigate my way through a sea of faces I will never be able to comprehend,” he says. “Imagine walking into a place where everyone looks like identical twins. That’s what I have to go through at social gatherings.” Because prosopagnosics are prone to depression, Alperin attends a day treatment program, which helps him overcome his unhappiness. Wolfing down his cinnamon rolls, he describes his treatment at the center.
“The sessions help participants through mental health issues and provide survival techniques. It is helpful, because everyone that attends shares the problems they have together.”
Social anxiety disorders and depression can ensue for prosopagnosics, because the disorder has such an impact on social groups and the patient’s interaction with society.
“The Internet is probably the best thing that happened to prosopagnosics,” Alperin says. “You can communicate with someone, build relationships, and maintain them without ever having to see their face or recognize them.”
Yet, lack of direct social interaction also led him down a bad path.
“I developed an online gambling problem when I was in college,” he says. “I specifically remember a telephone conversation with my mother when I was [in college] about a telephone bill which was off the wall, which effectively launched my gambling problem. It is still a problem, I don’t know if I will ever get over it.”
Alperin recognizes that gambling is dangerous. “Intellectually I know it does me far more harm than good, but addictions are rarely, if ever about applying logic.”
The need for social interaction is what pushed him to become a tutor. “It’s difficult to interact with someone on a one on one basis and that’s why I wanted to pose that challenge to myself,” he says.
Walking through residential Brookline, Alperin practices something he learned from Nancy Mindick’s book, Understanding Facial Recognition Difficulties in Children. He walks with his head down, and when he does look up, he avoids eye contact with passers by. “Because I have such a hard time picking up on non-verbal communication, I appear distracted.” He changes his expression and brings a distant look into his eyes. “This way, if someone wants to speak to me, they have to make the effort to approach me.”
“I am attentive all the time, but I still get confused,” he says, walking towards his student’s house. He pauses for a moment “I don’t know whether it’s this house, or the one next to it.” He walks up to one, but quickly changes his mind and rings the bell next door.
Alperin doesn’t feel awkward talking about his disorder with people he’s just met, he says. It’s not like he could hide it anyway. “Prosopagnosia is something that affects my interaction and my life on a daily basis, so I’m rather unabashed about my condition,” he says.
Alperin has been tutoring 14-year-old Avi Ber in math for the past three months and as a coach, he appears patient and gentle.
“Are you confident?” he asks when she tells him about an upcoming math project.
“Yeah, I think,” she says hesitatingly.
He glances at her briefly and smiles. “Not as confident as it sounds.”
Avi, a sophomore at Brookline High, says Alperin’s tutoring has helped her perform better. “He makes things very easy to understand,” she says. Alperin says his disorder has not harmed the student-tutor relationship. “I didn’t know what it was,” Avi says. “So I guess that’s another new thing I learned.”
***
Though researchers can trace face recognition problems after brain injury as far back as the 19th century, prosopagnosia was first identified as a separate neuropsychological problem by German neurologist Joachim Bodamer in 1947. While studying the brain injuries of World War II veterans, he came across two prosopagnosics.
One was unable to combine features to see a whole face; the other couldn’t recognize facial expressions. Though Bodamer was investigating a condition resulting from acute brain damage, contemporary researchers have found that a congenital or developmental type also exists: some patients are born with prosopagnosia.
Glenn Alperin started showing face recognition problems after a fall from his crib at 16 months. “I didn’t realize it so much when I was a child, but I was constantly confused,” he says.
Acquired prosopagnosia, when the patient suffers brain damage from an injury or stroke is better known because patients have a clear sense of their impairment and know what they were like before they suffered the brain injury. In developmental prosopagnosia, which is genetic, the impairment is less apparent to the patient.
“I feel like Glenn not knowing what life was like without the disorder is a blessing and a curse,” Alperin’s mother says. “He would also be scared to cure it, because he doesn’t know what life is like without it.”
Deficits commonly associated with prosopagnosia include loss of color vision and the inability to find one’s way about. When the Alperins took skiing trips as a family, Glenn couldn’t find his way from the parking lot to the lodge.
“But, when he was skiing, he made his way through the mountains with no trouble at all. I realized that it was the snow. All that white took away all that noise in his head,” says Peggy. Similarly, Peggy says Alperin prefers the night, because it is quieter and navigation becomes easier for him. “I wish someone [would invent] glasses for Glenn, where he could see the world in black and white. It would make his life a lot easier,” she says.
It’s a Sunday evening and it’s Hodes’s turn to cook dinner at home. His roommate Heidi Chua Schwa is in the kitchen making tea.
Hodes has lived in his Brooklyn apartment for five years. Because he doesn’t like to talk about his condition, he initially confused his roommates when he didn’t acknowledge them.
“He completely ignored me on the street one day and I was like ‘what?’” says Schwa, laughing.
Hodes smiles shyly. “Yeah, but then I told you about it and it was okay.”
He believes he needs to meet someone at least 30 times before he can recognize him or her. Social networking, however, is helping him cope. “Facebook actually really helps a lot, because I can see what the person looks like if I haven’t met them in a few months.”
Doctors and researchers say there’s no cure for the disorder, but they’ve made progress in identifying the areas of the brain that could be responsible for face blindness. In October 2012, doctors at Stanford performed a clinical procedure on a patient with electrodes temporarily implanted in his brain. They were able to find two nerve clusters that were critical for face perception. “We stimulated the region of the brain responsible for seizures,” says Josef Parvizi, assistant professor of neurology at Stanford. “It caused the patient’s vision of faces to distort, leaving the perception of inanimate objects and other body parts the same.”
While the study doesn’t provide any options for treatment, it helps distinguish the part of the brain responsible for face recognition. “I wouldn’t call it groundbreaking, but it is important because causelogy has been established for prosopagnosia, which other studies have not been able to do,” Parvizi says. Connecticut Muffin at Lafayette and Fulton in Brooklyn is one of Hodes’ regular haunts. He sits with one leg propped against the armrest of the chair, sipping chai.
“I like traveling,” he says. “I went to Sri Lanka to visit this girl I was dating, it was really beautiful.”
Does it ever scare him, traveling and maintaining a relationship given his disorder? He smiles “No, it doesn’t. But this girl that I was dating, she kept changing her hairstyle and it drove me nuts. It was like waking up with a different person every day.”
It does cause him problems as a journalist sometimes, though. He describes an interview he did while reporting on factory workers in the Bronx. “I’m taking really detailed notes and everything—suddenly his brother comes over. I look at them, same features, same hair and I think, ‘I’m totally screwed.’”
When he returned for a follow-up interview he asked the family members their names again, checking them against his notes. If he doesn’t recognize a source, he asks for the spelling of her name.
Like other prosopagnosics, Hodes complains that following the plot of a movie or television show is difficult. He watched Amour recently and didn’t find it difficult to follow because there were so few characters. But back on his favorite spot on the couch, James Cameron’s Avatar confounds him within the first two minutes when an actor morphs into a cartoonish character.
“Wait, is this the same guy that was looking at the dead body?” he asks baffled. He pauses and rewinds, starting the movie over three times.
He throws his hands in the air, exasperated, “How can you tell if he was the same guy in the wheelchair? Can you tell them apart? Man, you have some superpower.”
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