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‘Just because I have autism doesn’t mean I can’t shine’

Editor’s note: This is the second in an occasional series exploring career challenges and successes for those individuals on the autism spectrum.

By ROGER MOONEY

“Everyone has a mountain to climb and autism has not been my mountain, it has been my opportunity for victory.”

– Rachel Barcellona on Instagram

Rachel Barcellona will tell you her disability is not the fact she’s on the autism spectrum. The disability is the way others react to her being on the spectrum.

It’s the obstacles others placed before Barcellona when she was younger, either by teachers who didn’t believe in her ability to learn or classmates who bullied her because they saw her as different.

Barcellona didn’t fit in. She knew that. But here’s the thing: She never wanted to fit in. She wanted to standout.

“Just because I have autism doesn’t mean I can’t shine,” she said.

Oh, she shines.

Her list of accomplishments is quite long. Here are the highlights:

  • Barcellona, 23, is a fashion model and a beauty queen. She was the first woman on the spectrum to participate in the Miss Florida pageant and is under contract to model personal care and beauty products for Sephora.
  • She is an on-air personality for The Chapters Rap with Steve Vaccaro, a New York-based radio program that promotes unity and diversity.
  • She is on the board of the Center for Autism and Related Disabilities at the University of South Florida (CARD-USF) in Tampa.
  • She is on pace to graduate from USF in the spring of 2021, where she is double majoring in English/communications and creative writing.
  • She has sung the national anthem before basketball games at Madison Square Garden in New York.

Most of all, Barcellona is an advocate for autism.

She has her own platform which she calls The Ability Beyond Disability.

She has spoken at the United Nations during World Autism Awareness Day.

Her message: “I think that someone with any disability can become whatever they want. They just have to believe.”

Never give up

People believe in Barcellona. She wants them to believe in her. She knows the impact she has in the autism community, especially to young girls who see her as a role model.

“Families can identify with her story because it’s so multifaceted,” said Christine Rover, assistant program director at CARD USF. “It’s health challenges. It’s bullying. It’s ‘How do you get teachers to recognize my talents?’ Parents can relate to that story.”

Related: Adults on the autism spectrum are asking employers for one thing: A chance

But can their daughter grow up to be Miss Florida? Can they host a radio show? Can their voices be heard at the U.N.?

Why not?

Young girls on the spectrum tell Barcellona they want to be models and enter pageants.

“I always tell people to never give up,” Barcellona said.

In the United States, there are more than 3.5 million people on the autism spectrum.
In Florida, Step Up For Students helps schoolchildren on the spectrum meet their educational needs through the Gardiner Scholarship.
Managed by Step Up, the Gardiner Scholarship enables parents to personalize the education for children with certain special needs from age 3 through the 12th grade or age 22, whichever happens first.
During the 2019-20 school year, 13,035 schoolchildren received a Gardiner Scholarship. Of that total, 8,097 (62%) are on autism spectrum. Click here to learn more about the Gardiner Scholarship.

Barcellona grew up in Palm Harbor, Florida. She is the only child of Barbara and Frank Barcellona.

She was diagnosed with Asperger syndrome when she was 3. She also has dyspraxia (a developmental motor coordination disorder), dyscalculia (difficulty in learning math) and epilepsy.

The early prognoses from doctors were not encouraging. They said Barcellona would have a lifetime of learning and physical challenges.

Barbara Barcellona recalled watching Rachel struggle to hang her backpack on a wall hook while in kindergarten.

“I thought to myself, she’s never going to get that,” Barbara said. “As she got older, it was well she got this step and this step. She kept rising to the occasion. When she was younger people told her she would never go to school, and now she’s two semesters away from her bachelor’s degree.”

While she is very open about her past, especially the bullying in middle school, Barcellona doesn’t like to dwell on those days.

“I like to live life in the now,” she said. “I like to be happy and focus on what’s going to happen in the future. Just be positive.”

Her mom tells her that the past plays an important role in the future.

“I sometimes tell her you have to look back to see how far you’ve come,” Barbara said, “and sometimes looking back isn’t always easy.”

‘Me issues’

Barcellona was 10 when she decided she would change the world.

She was tired of being bullied in middle school and called “The Devil” by classmates and fed up with those who viewed her as different because she was on the spectrum. That included teachers, who she sensed didn’t know how to connect with students with special needs.

“There were lots of us,” she said. “There were autistic (students). There were people with other disabilities that were a lot worse, and nobody knew how to handle them. They were just kind of shoved into a corner, pretty much, and I thought, ‘That isn’t right.’”

Rachel and Barbara

Her anger boiled over one day when she couldn’t perform a task, simple to some, maybe, but not to her. Sensing Barcellona’s vulnerability, some of her classmates pounced.

“I could never do anything right,” she said. “They were just yelling at me that I was stupid, so I just yelled at everyone to shut up. Then I got in trouble, of course. The principal asked me, ‘OK Rachel, what’s wrong?’”

What’s wrong?

“They have me issues!” she screamed.

Then she cried.

“I was very emotional,” she said.

When Barcellona returned home that afternoon she went into her bedroom, grabbed a piece of paper and a pen and started listing the changes she wanted to see in the world.

While she doesn’t remember everything she wrote that afternoon, she remembers what she wrote first. She wanted to have a party for children with special needs.

Barcellona didn’t know it at the time, but she was building the foundation to The Ability Beyond Disabilities. Her ultimate goal is to open a school for students with special needs.

“I really love the fact that she wants to help other people,” Barbara Barcellona said.

People can change

Barbara started entering Rachel in local beauty pageants when she was 4. She thought it might help her daughter cope with her depression. It did.

Standing on the stage, Barcellona felt empowered. She loved to sing. She loved to entertain.

“I remember I got on that stage, I had a fear of coming off of it,” Barcellona said. “I liked showing people that I’m there. I liked just being there. I had a feeling people cared about me for who I was. I didn’t get that when I wasn’t on stage.”

Rachel at the United Nations.

Now, the girl with Asperger’s was drawing attention to herself for different reasons. She placed first at pageants. She was on Tampa Bay area TV shows talking about the difficulties of life on the spectrum and why it shouldn’t be that way. She appeared in the pages of fashion magazines, modeling the latest styles.

She sang the national anthem before a WNBA game in New York and before a Tampa Bay Lightning game in Tampa.

The little girl who was bullied for being different now had hockey and basketball fans cheering and saying, “Wow, I wish I could sing like her.”

Barcellona said it all comes from her heart. It has to. She knows her message must be sincere or people won’t listen.

Her goal is to prove that those on the spectrum can achieve many things. They just need a chance. That is why she is quick to share her story.

“I think she acknowledges that there have been some challenges and struggles for her, but she always says, ‘Yep, that’s life, but I’m not going to let it stop me,’” Rover said. “She really seems to turn it around and use it as fuel and say, ‘I want to help others who’ve had these obstacles put in their way,’ and just shines with it.”

For 10 years, Barcellona received therapy from CARD-USF. Now, she sits on the constituency board, where Rover said Barcellona provides the first-person voice of life on the spectrum.

“To see that come full circle is something I find incredible about her,” Barbara Barcellona said. “She doesn’t need to do that, but she generally wants to help other people. I think the world of her for it.”

Rover credits Barbara and Frank for guiding their daughter through those uneasy childhood moments and supporting her dreams.

“I always thought she was capable of achieving what she wanted to,” Barbara Barcellona said. “But there were oftentimes, especially during middle school, where she faced so many challenges, she had to be very strong. Even though you have a family and a good support system, it has to come from within. Even though we support her 100%, some of the stuff she really had to believe in herself.”

Barcellona is confident in her own abilities and future.  She will work in radio. She will have a modeling career. She will build that school for children with special needs.

She will use her platform to change the way people view those on the spectrum, the way they view anyone with a disability.

Every so often Barcellona hears from an old classmate which makes her happy and lets her know her message is being heard.

“The ones that were really mean to me in middle school end up emailing me and telling me how wrong they were, and they were sorry,” she said. “It’s nice to see that people change.”

Roger Mooney, marketing communications manager, can be reached at rmooney@sufs.org.

Adults on the autism spectrum are asking employers for one thing: A chance

Editor’s note: This is the first in an occasional series exploring career challenges and successes for those individuals on the autism spectrum.

By Roger Mooney

Six years ago, Joseph Show stood in front of then Florida Gov. Rick Scott and the Florida Legislature and talked about his life on the autism spectrum. He was not nervous.

Quite the opposite, he said.

Joseph Show before his 2014 speech at the Florida Capitol with lawmakers.

It was March 2014, a little more than a week before the April 1 start of Autism Awareness Month, and Show was eager to create awareness for some of the state’s most influential people.

“Hey,” he told the lawmakers,” we exist.”

That was a great way for Show to begin.

More than 3.5 million people in the United States are on the autism spectrum, and the advocacy organization Autism Speaks estimates 707,000 to 1.1 million teens will age out of school-related services each year during this decade.

The Gardiner Scholarship, managed by Step Up For Students, enables parents to personalize the education for children with certain special needs from age 3 through the 12th grade or age 22, which ever happens first.

During the 2019-20 school year, 13,035 schoolchildren received a Gardiner Scholarship. Of that total, 8,097 (62%) are on the autism spectrum.

What happens to those students after they age out of a school-based service? That’s what Show wanted to discuss at the Capitol with lawmakers.

Wearing a blue suit he bought the week before at Dillard’s for the occasion, Show explained that people with autism can accomplish many wonderful things. Sure, some may need more time or use methods that are different than those in the neurotypical population, but is that so bad?

Show finished with this plea, one made by far too many adults on the spectrum.

“Please,” he said, “don’t be afraid to hire us.”

Exact figures are hard to pin down, but the estimate of adults with autism who are unemployed nationwide is believed to be between 80% and 85%. Certainly, those numbers are even higher with the COVID-19 outbreak.

Show, 29, a web app developer for a software company in Tallahassee, Florida, finds those numbers difficult to digest even prior to the pandemic. He turned his degree in information technology from Florida State University into a career. He knows of others on the spectrum who experienced similar success.

“I have trouble reconciling that with these unemployment rates,” he said. “There are clearly people like me who did get jobs and are doing fairly well at them, so shouldn’t this rate be going down?”

Under-tapped talent pool

A 2018 story in the University of Washington Magazine said studies have found the biggest roadblock to employment among adults with autism who do not have intellectual disabilities is not a lack of ability but a lack of understanding social skills.

Few things derail a job interview quicker than an inability to make eye contact, too much information in answers or an increased anxiety from communicating with strangers in an unfamiliar setting – all traits common among those with autism.

Generally speaking, the traditional interview process is challenging for those on the spectrum.

Then there is the perception that employees with autism are difficult to manage, are prone to angry outbursts and take more sick days than their neurotypical co-workers.

Allison Leatzow, a consultant at the FSU Center for Autism and Related Disabilities (CARD), said the exact opposite is true.

“A lot of them are so into wanting to follow the directions, their work is their social life, that they’re actually more inclined to want to be there and do their best,” she said.

Those adults on the spectrum who are employed are generally found in two areas: the service industry and high-tech companies.

Some possess an extraordinary attention to detail that makes them ideal employees in jobs that require repetitive tasks. For others, their ability to detect patterns and knowledge of computers serves them well at software companies.

SAP, a German software maker, and Microsoft were among the pioneers in the high-tech world in targeting adults on the spectrum. Both created a hiring process to better evaluate autistic talent. The standard interview process was scrapped and replaced with team-building settings, where applicants worked together to accomplish a task. This is a better way to demonstrate an applicant’s talents and thought process.

SAP began this process in 2013. Within five years, it had hired 128 adults on the spectrum to fill roles in graphic design, software testing, data analysis, IT program management, quality assurance, human resources and finance administration.

“We don’t pigeonhole our candidates on the spectrum. We aren’t going to say, ‘Well, you’re only going to be good at certain things,’ because everyone has different interests and unique talents,” Jose Velasco, who oversees the Autism at Works Program at SAP, told CIO.com.

Not a function issue

Rising Tide Car Wash sits on a busy thoroughfare in Parkland, Florida. Purchased in 2013 by the D’Eri family, it is among the growing number of small business designed to employ a family member who is on the spectrum.

Andrew D’Eri vacuums the interior of an SUV at Rising Tide Car Wash in Parkland, Florida.

In this case, it is Andrew, 29. His father, John, looked for a business that he and his son, Tom, could run that would not only employ Andrew but other adults with autism. Tom said they wanted a business that was well-structed, detail-oriented and offered entry-level type work. After a year of research, they settled on a car wash.

“We wanted a business that could employ enough people to create a community and hopefully something that could really have an impact on the perception of adults with autism in the workforce,” Tom D’Eri said. “After preliminary research, it was pretty clear that a lot of people with autism have wonderful skills that are perfect for the workforce, but we, as a society, look at autism as a disability that requires sympathy instead of a really valuable diversity, and that perception issue is really why there is (a high) unemployment among adults with autism.”

Today, Rising Tide has two locations and employs 78 adults with autism, which makes up 80% of the workforce.

Tom D’Eri said the Parkland location averaged 3,000 vehicles a month in the year before his family bought the business. It now averages close to 17,000 a month.

The D’Eris also started Rising Tide U, a program to promote the benefits of hiring autistic workers and provide guidance to those who want to start similar businesses to help cut into that high unemployment rate.

“What is so amazing, sad, interesting – whatever word you want to use – is that this is almost completely a perception issue and not a function issue,” Tom D’Eri said.

Overcoming obstacles

Haley Moss was 3 when she was diagnosed with autism. Her parents were told she might never be able to hold a job or live on her own. A frightening forecast, for sure, but one her parents never believed.

Society placed obstacles in front of Moss, her parents helped her knock them down.

“When everyone else said no, they were the ones who said yes to at least give me the opportunity to try or keep pushing forward when other people didn’t have that faith,” Moss said.

Haley Moss on graduation day from the
University of Miami School of Law.

Moss, 25, is an autism advocate with psychology and criminology degrees from the University of Florida, and a law degree from the University of Miami. She is believed to be the first openly autistic person to pass the Florida bar exam.

Moss has her own apartment. She wrote two books about growing up on the spectrum and has contributed to a number of publications and websites, including the Huffington Post and Teen vogue. She is an artist.

She has not, however, overcome autism.

“That’s something I feel very strongly about, because I haven’t and that’s not something that’s going to exist,” she said. “I’m very proud to be on the spectrum.

“I have overcome the obstacles that society has in my way, the bias, the discrimination. People who don’t believe in you or think that you’re not capable of things, all that I’ve really overcome.”

Moss founded her own company to advocate for neurodiversity in the workplace and consult with companies on the benefits of an inclusive workforce. Her message is adults on the spectrum have strengths and weaknesses just like neurotypical adults. And, like neurotypical adults, those on the spectrum want the same thing: to be treated with respect.

“It’s being treated as a whole person is what we keep fighting for,” Moss said.

While it is encouraging to see companies reach into the autistic population, Moss would like to see more opportunities than those in the retail and STEM fields.

“I like to explain it like a grocery store,” she said. “We all see young adults working as cashiers or the deli counter. You know they probably are people with disabilities, and it makes you feel good. You love it. But are those same companies hiring people like me to work in their general counsel’s office?”

Working through the diagnosis

Mark Fleming believes that if he walked into a gym and applied for a job as a trainer he would not be hired because he is on the spectrum. That is interesting because Fleming has a bachelor’s degree in exercise science and a master’s in human performance from the University of Alabama.

So, Fleming, 31, opened his own gym, Equally Fit, in Tampa that serves clients on the spectrum.

Mark Fleming stretches at Equally Fit, the gym he owns in Tampa that serves clients on the spectrum.

He said some parents first view an autism diagnosis as a death knell for their child’s future. Fleming believes it should be the opposite.

“Once you get a diagnosis, you can understand more about yourself,” he said. “I may not be good at this, but it doesn’t limit me from owning a business or doing whatever I want to do. You might have some limitations, but it should never be, ‘My kid can never do this,’ or, ‘I won’t be able to do this because of this.’ It should be, ‘I’m able to do this because of this. I’m able to do other things, because I know myself more, I know that I might need help and that’s OK.’”

Joseph Show, Tom D’Eri, Haley Moss and Mark Fleming each used some variation of the word “frustrated” when asked about the 80% to 85% unemployment rate among adults on the spectrum.

Each feels that number can and will be lowered with education for the employees, the employers and even neurotypical co-workers.

Stereotypes must be erased.

In some instances, accommodations need to be made for an autistic employee. Yet, D’Eri said, that has a positive ripple effect.

“When we design systems that work for them, they work for everyone,” he said. “So not only do you get access to this wonderful talent pool, they help you build a better organization.”

How low can the unemployment rate go is, ultimately, up to employers.

“It’s good for everybody to have a neurodiverse workforce,” Moss said. “You have innovation. You have people that have different experiences working together. It’s about understanding, accommodating, and being accepted.”

Roger Mooney, marketing communications manager, can be reached at rmooney@sufs.org.