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Putting the ‘personal’ in training for those on the autism spectrum

By ROGER MOONEY

Reid Stakelum was tired when he entered Equally Fit in Tampa in the afternoon, a result, his mom said, of staying up a little too late the night before to watch the movie “Back to the Future” at a local drive-in theater with his family.

Fatigue can be a trigger for Reid, 17, who is on the autism spectrum and receives the Gardiner Scholarship managed by Step Up For Students. It puts “more stress on his body and his brain,” said Reid’s mom, Brittany. Add an hour’s worth of exercise, and Brittany was expecting an unproductive session for her son at the gym.

Reid Stakelum rides an exercise bike while trainer Mark Fleming watches. Both are on the autism spectrum.

She based that on experience. Reid had been a member at other gyms, and the trainers there, when facing a less-than-energetic Reid, often pushed him to work harder to shake off the lethargy. That method might work for some, but Brittany knows it does not work with her son.

But Mark Fleming, 32, who owns Equally Fit (formerly Puzzle Piece Fitness), is also on the spectrum. He understands Reid.

When Fleming realized Reid wasn’t physically ready for his typical Thursday afternoon workout, he made adjustments on the fly. Fleming eliminated some of the planned exercises, added more rest and recovery time and increased the weight or the repetitions of others. What had the potential to be a lost afternoon at the gym turned out to be a productive session.

“Mark totally gets it,” Brittany said. “He is totally self-aware. He was able to relate to Reid and get him to calm down. Mark made sure it ended with a positive, where in other gyms, it would have been, ‘Nope, you got to do it,’ and that doesn’t work for people with autism.”

Bringing back the ‘personal’ trainer

Fleming, who was raised in Tampa and attended private schools, has a bachelor’s degree in exercise science and a master’s in human performance from the University of Alabama. 

It was a natural progression from a youth spent playing sports, mostly basketball and football.

His first love was baseball. Family lore has it, Fleming could read a baseball box score before he could read a book. But his passion for the sport went away when a lack of hand-eye coordination prevented him from hitting a baseball. He moved on to basketball, but again encountered difficulty, because, he said, “my hands didn’t work the way they need to.”

“I had very limited physical skills,” he said. “But due to my fascination with sports, I was able to be determined enough to overcome those issues.”

In high school, Fleming played linebacker on the Cambridge Christian School’s football team despite weighing 145 pounds.

Fleming began working with a physical trainer when he was in middle school. “Traditional weight room stuff,” he said, with the emphasis on weight training.

“I greatly benefited from it,” he said, “because I gained confidence.”

But, he added, “Toward my junior year, I started to accept that I can’t do sports. What am I going to do? It took me a while to find exercise science. That parallel interest really helped me.”

Mark Fleming has a bachelor’s degree in exercise science and a master’s in human performance from the University of Alabama.

While in graduate school, Fleming said he started working in applied behavioral analysis as a behavioral assistant. He also became a volunteer coach for the Special Olympics.

He worked with children with autism in a school setting and saw those with fine motor and gross motor deficiencies go through occupational and physical therapy. On weekends, he saw the same deficiencies with the adults he coached at Special Olympics.

Many people on the spectrum have low muscle tone that can be improved with therapy but not corrected. It returns when they stop physical and occupational therapy.

Fleming learned there were few if any opportunities for these adults to stay active after they completed occupational and physical therapies.

Fleming had an idea. Already certified as a physical trainer, he decided he would work with those on the spectrum. But instead of emphasizing weight training, he would emphasize basic movements as a means of getting his clients physically active.

There is often stimming behavior – hand-flapping, rocking – but that is not exercise.

“When we’re dealing with autism, specifically, we’re dealing with a lot of sedentary behavior,” Fleming said. “Exercise helps pull kids out of that a little bit.

“A lot of these kids have gross and fine motor issues that need to be worked on. Those are where the starting points are. Let’s get these basic movement patterns down first and then we’ll get into the more complex as we go along.”

Fleming spent his first year as a physical trainer loading hurdles, resistance bands, sandbag style weights, soft medicine balls and steppers in his Honda Accord and driving to his clients, who were fanned out across the Tampa Bay area.

New client fills out a questionnaire, so Fleming can learn their objectives and their triggers. Are they sensitive to the florescent lights? He’ll turn them off. Noise? He’ll slow down an exercise if he hears a loud truck outside. Does their medication raise their body temperature when they are active? If so, Fleming will make the gym cooler during their session.

“You have to bring personal back into personal training,” Fleming said.

Bonding over Phineas and Ferb

Diane Carothers had taken her son, Mikey, to gyms that had classes designed for children. But those gyms played loud music and the lights were too bright. The trainers were loud and a little too enthusiastic for Mikey, who also used a Gardiner Scholarship through Step Up.

“I don’t think they would understand him,” Diane said.

 She learned of Fleming’s gym through a Facebook group for mothers who home-school special needs children. Like Reid Stakelum, Mikey, 13, is on the spectrum. And like Brittany Stakelum, Diane spent her first visit at Equally Fit filling out the questionnaire and answering questions about Mikey.

Diane said she immediately knew this was the gym for Mikey. The question was: Would Mikey feel the same way? The answer is yes, though it took a few visits.

Mikey and Fleming formed a bond over their shared interest in the video game Roblox and the animated TV series Phineas and Ferb. They discuss those two while Mikey rides an exercise bicycle, lifts his feet over small hurdles, lifts the sandbag style weights and performs squats and lunges.

Mikey has coordination issues. He will slouch if sitting too long. This sometimes causes him to fall out of a chair. But after attending twice-weekly classes for the past year, Diane said Mikey’s coordination has improved and he has more strength in his hands and core.

“It’s been great for my son,” Diane said. “I’ve tried to get him involved in sports, but he doesn’t do well in team sports, and he’s just not very coordinated. Having a personal trainer is great for him, and I think that might not be the case if it was just any personal trainer, but Mark is so good with him. He’s so patient and he’s low-key and he understands him. Mikey is just so comfortable with him.”

So comfortable that Mikey walks on the treadmill at home.

“The only reason he’s willing to do that is Mark encouraged him to do that,” Diane said. “He looks up to Mark as an authority on the subject whereas Mom is not.”

Equally Fit is located 40 minutes from the Carothers’ home in Port Richey. Toss in a 60-minute session to the nearly 90-minute roundtrip commute and that is quite a commitment to make twice a week.

“I do it because it’s really beneficial for Mikey,” Diane said.

Perhaps the biggest endorsement Diane can give Fleming is this: He is one of the few people she feels comfortable leaving Mikey with.

“I’ve always been the kind of mom who sort of hovers,” Diane said.

Initially, she sat in the gym’s waiting room and watched Mikey work out. Then Diane would remain in the car and watch from the parking lot.

Now, she can use that hour to run a quick errand.

“It’s a big thing because Mikey is so comfortable with Mark, and Mark is so competent and understanding that I know Mikey will be fine with him for an hour,” Diane said. “There are very few people that I can leave Mikey with for an hour without Mikey becoming uncomfortable or distressed and there are no other people that I trust to handle a situation where Mikey becomes distressed.”

Excited to work out

Brittany Stakelum knows her son, Reid, would rather stay home and read a book or play a video game. The sedentary lifestyle, she said, fits many who are on the spectrum.

“They have more to offer than that, but they haven’t been around the right people in their lives who actually believe in them and will encourage them and tell them they can do anything they want,” Brittany said. “Mark’s mission is to help my son and his other clients to live their best lives.”

Reid stretches before a workout.

Reid has a part-time job in a supermarket. He used to struggle lifting and carrying cases of water. Fleming showed him the proper way to lift by using his legs. Problem solved.

Brittany also teaches children with special needs. She called Fleming “a breath of fresh air” for his dedication to working with clients on the spectrum and his desire to help them live a life that includes a degree of activity.

Fleming knows his clients do not need the same training he received when he was in school. Fleming, after all, was on the football team.

“A lot of kids I work with aren’t into that stuff. They don’t need that,” he said.

But what they need is the right exercises to get them off the couch, to improve their coordination, flexibility and strength. To improve their confidence, too.

Reid serves as an ambassador for the gym. Fleming posts pictures of Reid’s workouts on the Equally Fit’s Facebook page. For that, Reid received a $100 American Express gift card.

“He’s trying to show each person with autism that their time means something as well.” Brittany said. “Not only is he a great personal trainer, but he’s a great businessman, and he’s a great advocate and a great role model, especially with teens.”

Reid said he enjoys doing leg lifts. He said he likes going to Equally Fit because Fleming is “patient and encouraging” and is helping Reid get stronger.

Like gyms everywhere, Fleming had to close his for a few months during the outset of the COVID-19 pandemic. He continued to work virtually with some clients. Others found it difficult to complete the exercises without being in the same room with Fleming.

Reid found himself slipping back to his sedentary lifestyle. He could not wait for the gym to reopen.

“Reid is actually excited to go,” Brittany said, “and I don’t ever remember my son being excited to work out.”

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.