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Since he was 5, Tobi Akbas has been nicknamed "the Mayor" in the affluent suburb of Garrison, New York, where he lives. When his mom would take him to the supermarket, he would say hi to every person they saw. In high school, he'd wait in front of the school building to greet students as they arrived.
Now 22, Tobi still craves human connection like oxygen. He's the unofficial ambassador of a Garrison volunteer firefighting squad, handing out candy canes at the annual Santa Run. He posts motivational "Tobi tips" online — as well as sharing them with anyone who asks.
Tobi has a rare genetic condition called Williams syndrome that can be characterized by extreme friendliness, low inhibitions, and a deeply trusting nature. Those who have it may treat strangers as if they were old friends. Recent studies have found that some of the genetic variants that explain why domesticated dogs are more sociable than wolves are shared by people with Williams syndrome.
It is the result of the deletion of about 20 genes and affects an estimated 20,000 to 30,000 people in the US, according to the Williams Syndrome Association. People living with the syndrome tend to have a normal life expectancy, though about 80% have cardiovascular issues, sometimes severe ones that can require multiple surgeries. There's a 50% chance of passing the condition to their children.
Three-quarters have intellectual disability, which can vary from mild to moderate. Most need support throughout their lives.
I've traveled to Garrison to spend a few days with Tobi and his family. I want to understand what his life is like and how he's managing the shift to more independence in his 20s — and maybe to pick up a few Tobi Tips for myself.
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When I arrive at the comfortable suburban house he shares with his parents, he gives me a T-shirt with "Be Tobtastic" printed on it. It's an adjective he named after himself to mean "positivity, strength, perseverance, and the will to never give up no matter what." He's slight, with a wide mouth and upturned nose, which are all distinctive facial features for those with Williams syndrome, as is the starburst pattern around the iris of his eyes. He tells me directly that this interview is outside his comfort zone and says he knows that as a visitor to his house, I might be outside of mine too.
He feels his purpose is to spread optimism and help others. "I am an empath, so I see all the emotions," he says. "I can see that people are upset and everything and it's just like, 'OK, what can I do to help?'"
Tobi is at the precipice of adulthood.
His routine is managed with the close support of his mom, Terri. Some people with the syndrome need help with tasks like tying shoelaces — fine motor skills can be challenging — and cannot be left alone. Tobi has lower support needs, but he struggles with basic math, meaning time management and finances are difficult. He can't drive because of his anxiety and gets easily fatigued. He graduated from a special-needs school program and thinks about living alone but doesn't know how to get there.
For five years, he has been a volunteer firefighter. It's a passion he's had since he was little. His grandparents lived across the street from a firehouse, and he used to watch their drills through the window. Sensitivity to loud noises is a hallmark of Williams syndrome, and Tobi would obsessively watch videos of sirens on YouTube when he was young. His bedroom wall is covered with more than 100 firefighting patches that his mom has requested from departments around the world.
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His anxiety, another symptom, can make the job hard. "It's not good for me, honestly," he says. During my visit, he went to a car crash scene with three other volunteer firefighters and said he was so nervous that his shoulders shook on the ride over. Two years ago, he had a panic attack while putting out a fire on a sweltering August day and nearly passed out. He no longer volunteers in hot weather.
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But he's dedicated to helping others through firefighting. "People have helped me all my life, including, like, hospitals and stuff," he says.
Tobi wasn't able to take a strenuous state firefighting class because of his low muscle tone. The department decided to waive its rules and take him off probation anyway. He mostly operates hoses and secures perimeters.
When I visit the firehouse, the department chief Robert Boddie Jr., a self-described military man with a gruff demeanor and a horseshoe mustache, is all smiles when he talks about Tobi.
Tobi's readiness to express his emotions is a benefit to the team, Boddie says, comparing him to a litmus test. "If Tobi's feeling it, that means other people in the room are feeling it; they just may not be saying it," he says. When the last department chief left suddenly, unsettling the team, it was Tobi who voiced the problems to Boddie.
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His social tendencies see him center stage at fundraisers, and putting recruits at ease. "He brings a lot more to this department than some people do that have a litany of classes," says Boddie.
In a world where everyone is pressed for time and phone notifications cut into real-life conversations, Tobi's focus on me when we talk is disarming. He listens with none of the microexpressions that can give away when someone is waiting for their turn to speak.
"Most of the kids and adults from very early on through adulthood have such a strong social drive, and they so tune into you and so want to engage with you," says psychologist Karen Levine, who started working with patients with Williams syndrome in 2000. "And it's very compelling. It feels good to be sought out."
She's been greeted with hugs from strangers at the biannual convention for people with Williams syndrome, which make her "feel like a rockstar."
"I've had people cling onto my leg," says Tobi of the gatherings. There's often singing and dancing thanks to many with the condition having an affinity for music.
But Tobi and others with Williams syndrome can feel adrift: excluded among neurotypical people for being different, yet out of place among others with learning disabilities, as they are often far more social.
Tobi seemed popular at school, according to his childhood friend Haley Gallinger. He became close with the football team and would sit with them at lunch. But Tobi recalls being teased for not understanding sarcasm, and being called a "baby."
He hated being in a special-needs class. He was a social butterfly, while some of his peers were nearly nonverbal. "He was in that 10% of kids that come through this program who are aware to a certain extent, where the other 90% are just not aware of their status," said his high-school teacher Daren Bjerke. In the end, Tobi chose to leave school at 18, even though he could have stayed in the program until he was 21.
Terri, who's 50, wakes him each morning and drives him to a host of activities: job training at a supermarket and a gym, learning skills like budgeting through a Medicaid-funded program, classes on subjects like US geography in a program for adults with learning differences, and learning karate at a dojo where he's also an unpaid assistant instructor.
Inspired by his older brother, Devin, Tobi started taking karate classes when he was 8. His youngest students are 4 years old.
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"Don't give up! Never give up!" he yells as he cheers on the kids when I watch him help teach a class. He's the first instructor to grab an ice pack or hug disappointed students when they fail to break a board, other instructors tell me. Later, as I watch him as a student in a class just for black belts, he struggles at one point when he confuses his left with his right.
Tobi hopes to get his first paid job in 2024. Full-time work is unlikely given his stamina, but his parents think something part-time could work. Some of his tastes of employment so far haven't worked out. He got bored folding clothes at Marshalls and fatigued working a printing press at a T-shirt store. The gym he's been doing job training at is closing soon but was an ideal combination of social interaction and routine. John Martinez, the gym manager, would have hired him for his people skills. "You can teach the process," he said. "You can't teach the personality and spirit."
Despite his cheerful demeanor, Tobi has at times found it hard to adjust in spaces where he's the "only one" with Williams syndrome. "I'm the only one in my dojo. I'm the only one in my firehouse. I'm the only one in my school. So it takes a lot out of you," he says.
His anxiety has worsened with age, meaning socializing can be overwhelming. That's common for those with Williams syndrome, said Mary Van Haneghan, the executive director of the WSA. "It kind of changes their personality because it cripples them to not be able to engage in things that naturally they would have."
Many of his old friends moved on to college. The people he's met through his activities don't necessarily ask to spend time with him outside that. On a Saturday night, it's just him, his parents, and his iPad. "It makes me feel sad because I don't have, excuse me if I get emotional here, but I feel this way a lot," he says. "No one really invites me places or wants to."
When I ask why he doesn't get asked to hang out, Tobi is careful with his words. He doesn't want to judge other people, he says. Maybe it's hard for them to understand those who are different from them. He has to suppress fears that it's his fault: "I kind of remind myself, 'You've been doing so many good things. It's not because of that.'"
But when Terri asks him whether he thinks neurotypical people prefer to hang out with people like themselves, his answer is yes.
Tobi is not short of friends online. On days when he has fewer activities, he can spend up to eight hours talking to a network of hundreds of people with Williams syndrome through about 60 group chats.
"If we lose power and, like, the WiFi goes out or whatever, it's genuinely stressful for him," Terri explains.
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One evening, while she prepared dinner, Tobi and I sat on the couch and he started a FaceTime with four friends. One had a TV news broadcast on full volume. Two were rocking back and forth in recliners. It was mainly Tobi who looked at the camera.
Tobi calls these groups a "kindness community."
"Love is an important thing in our community that we try to tell people a lot that we love them," he says. He and one friend, Ally, who's 32, have never met in person but text each other "I love you" every morning. With other friends, he has dance parties, talks about food and dogs, and makes silly faces, which is something he finds hilarious.
They also send "code red" texts, calling each other to get on a video chat immediately. Tobi has sent these when he's had anxiety attacks, and he has responded to Bat-Signals when friends have had suicidal thoughts or seizures.
The groups seem to give Tobi something he can't get elsewhere. "I enjoy talking to my friends more than anything," he says. "They care so much."
He wishes they lived closer. "Not everyone's going to accept you for who you are," he explains. "That's something I've had to learn and learn the hard way. But if you have the right people at the right time, it makes things better."
As with all online groups, infighting can happen. Williams syndrome comes with heightened sensitivity, so things can escalate fast. There are feuds over crushes, jokes get misunderstood, and people pick sides. Tobi has been kicked out of chats for perceived slights. When he acts as a peacekeeper, he can get so frustrated that he is driven to tears. "Usually I like to take care of other people before myself. And that puts me in bad situations," he says.
Online environments can be difficult for people with Williams syndrome to navigate, says Joel Liestman, the director of family support at the WSA. Their trusting nature means they can be vulnerable to scams and sexual abuse. "A friend request, I mean, it's right there," he says. "You have a physical picture and a button that says 'I want to be your friend.'
"That's got to be incredibly enticing for people where it's part of their DNA to try to connect with people."
Still, connecting with others with the condition is powerful. Tobi's friend Callie Truelove, who is 20 and a celebrity in the Williams-syndrome community, tells me that when she first visited a convention she burst into happy tears. "I never felt such a strong emotion like that before. It hit me like a bullet, and I said, 'I'm finally with my people.'"
The energy at the convention is palpable, says Jocelyn Krebs, who researches the condition and has a son with it. "They get so relieved and so do their parents and caregivers to come together in that space where everybody gets it and they know each other.
"Imagine a hotel lobby just filled with people of all ages with Williams syndrome, and they end up looking like they're more related to each other than to their own families because you really start seeing the distinctive features."
Truelove uses her Facebook page to livestream feel-good content and uplifting Bible readings to 168,000 followers. She has said she often sees hearts in everyday objects.
She has met Tobi only twice in person but considers him the brother she never had. She sees Williams syndrome as a gift and believes everyone could learn more empathy from those with the condition. "Even if you don't actually have it," she says, "you can have it in your heart."
In the basement of the Akbas house, Terri shows me a binder of medical records and research pamphlets labeled "Tobi's Book." The cover has four photos of a young Tobi and an inscription that reads: "Our WS children, like all children, are given to us with no guarantees, but with all possibilities."
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Tobi got his diagnosis at age 2 ½, through genetic testing. "I describe it as a period of mourning," Terri says. "When you first get that diagnosis, of course, you think everything you read is going to be the way it is, and you know, all the dreams that you had for your kids."
She's worked part-time for Tobi's whole life and remotely for 16 years, now as an environmental consultant. She became a relentless advocate for him and signed him up for benefits and services, which she has felt conflicted about given the family doesn't need financial assistance. "But there will come a time when we're not here, and all of that stuff has to be organized for him," she says. At one point when Tobi was a toddler, they had 11 forms of therapy and other services a week.
"If somebody told me, 'Don't worry, he'll be able to be a firefighter when he grows up,' I'd have never believed them," Terri says. "His personality and heart just bring so much joy to our family that it's made us all better people as we've helped him grow up."
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For adults with Williams syndrome who don't have Tobi's support system or online network, life can look very different. Many can struggle to make and keep friendships.
Overfriendly behavior that is endearing in a child can be off-putting coming from an adult. "They may stand too close or hug too easily or treat strangers like old friends or shift topics too much, or they just may crave more moments of strong emotional connection," says Levine. Neurotypical people can also seem unfeeling to people with Williams syndrome, she adds: "It can feel rejecting if you don't smile at them or don't engage with them enough. It can feel cold."
Josh Duffy, who's 45 and lives with the syndrome, longs for more connection.
"We're like parasites; we're after the heart," he told me on the phone a few weeks before I met Tobi." He's also been nicknamed "The Mayor" and says he's an optimist, but he describes his loneliness in stark terms.
Eighteen minutes into our phone conversation, Duffy told me he loved me. He wanted to see me and do something together if I ever came to Maine. "Even if we sat at some restaurant and ate and talked for a half hour and then said goodbye and never saw each other again," he said, "it would be kind of worth it."
Duffy got his diagnosis two decades before Tobi and before the WSA was even founded. He rarely talks to anyone else with Williams syndrome and finds it hard to relate to the younger people who dominate the group chats and live with their parents.
Duffy lives alone in Brunswick, Maine, and has been unemployed since the local video store where he worked closed. He volunteers at a homeless shelter and sometimes invites people he doesn't know very well to spend the night at his home to help them out, but also for the company.
He spends a lot of his time at bars, restaurants, or shops where his friends work, as they are often too busy with families and other commitments to hang out elsewhere. "I'm fine with it, but a person can only swallow so much pride about what everybody else is doing without vomiting."
"I'm not suicidal, but it's very hard," he said.
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Tobi has been researching love.
He watches vlogs made by neurotypical couples about their relationships. "I'm trying to see what that's all about, even though I kind of know it, but still not experienced enough."
He has had two relationships with women with Williams syndrome, but in both cases they didn't work out. At one dinner with his parents, he talks about getting married and raising children. "I want to have a life that you two had and be able to have kids," he tells them.
Tobi starts sentences with "when I live on my own," but when I ask him point blank whether that will happen, he doesn't know. "I really like living with my parents. It would be hard by myself," he says.
He started traveling by himself a year ago using a shuttle service that takes him part of the way to some job training. He is learning how to prepare simple foods like chicken cutlets and oatmeal and working on budgeting, but his math deficits will always be a challenge.
Most of the people with Williams syndrome whom Tobi knows live with their parents, "even though they're, you know, in their 30s," Terri says. She still does a lot for him, though some of that is the habit that many parents with older kids at home fall into. "If he weren't living at home, there's a lot more that he could do, 'cause he would have to do it," she laughs.
She and Tobi's dad have thought about retiring to a college town where Tobi can get around without driving, and have set up a special-needs trust to support him after they die. Terri can see him living semi-independently, with roommates perhaps, and his parents close by. But, Terri says, "If he wants to live with us forever, then that is fine."
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For our last meal together, at a firehouse-themed grill that Tobi picked out, I ask whether he has any questions for me. Suddenly he is bashful, and asks, will people ask for his autograph after the story comes out?
It is hard to spend time with people who have Williams syndrome and not wish that everyone were a little less cynical and showed a little more care for one another.
I return to my New York City studio apartment with a king-size bed that feels too large for one person. It's easy to feel isolated in a big city. Here, we stare down at their phones rather than talk to the person sitting next to us. We pass homeless people on the street and avoid their gaze. We're hyperconnected, but we can be hyperfocused on protecting our boundaries.
I find myself missing Tobi after my visit. I text him for a "Tobi tip" and he replies within seconds: "Today's Tobi tip is not to let people stop you from doing what you need and want."
Making ourselves more open to new connections isn't always a quick fix for loneliness, but my visit to Tobi reminded me that it's a choice we all have, and one that can bring joy.
I ask him if he wants neurotypical people to better embrace people living with his condition.
"It's kind of up to the people themselves," he says. "If they want to come into our world and experience it for themselves, then be our guest."
Credits:
Reporting: Hayley Cuccinello
Editing: Louise Ridley
Design and Graphics: Trenton Almgren-Davis
Photography: Jackie Molloy
Copyediting: Kevin Kaplan
from All Content from Business Insider https://www.businessinsider.com/what-its-like-williams-syndrome-living-loving-strangers-2023-12
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