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Blake Kunst, of Meriden, cleans up a memorial garden he created in honor of his grandfather Carlos Lavado at Hunter Golf Course in Meriden on  Feb. 27. The 19-year-old diagnosed with Autism Spectrum Disorder is a maintenance worker at the course on Westfield Road. Kunst constructed the garden as part of his Eagle Scout project in 2018. Dave Zajac, Record-Journal

Adults with autism in Connecticut struggle to find employment, quality of life

A special report by Matthew Zabierek, Record-Journal staff, August 09, 2020

Adults with autism in Connecticut struggle to find employment, quality of life

Adults with autism in Connecticut struggle to find employment, quality of life

reporter photo

Editor’s note: This is the final story in a 3-part series examining the impact of autism spectrum disorder on our community.

MERIDEN — Driving precisely the speed limit from his house on Royal Oak Circle seven minutes away, Blake Kunst pulls into the parking lot at Hunter Golf Club around 4:30 a.m., 30 minutes before his shift as a maintenance worker starts.

An in-depth series looking at how autism impacts us all.

“It’s tough to get to work before I do, it really is,” course superintendent Tom DeVaux said, “and his first week he was waiting in the parking lot, waiting for me to open the gate.”

The 19-year-old diagnosed with autism spectrum disorder sees the world “in black and white,” his parents said, meaning he interprets everyday rules and guidelines, like speed limits and start times, rigidly.

“That’s what makes a great employee,” Blake’s dad, Erich, said. “They’ll only do it right, they’ll always be on time, and they’ll work late if they have to.”

Kunst graduated from Lyman Hall High School’s Vo-Ag program in Wallingford last year and now works full-time during the golf season as a maintenance worker at the golf course while taking classes at Middlesex Community College. Kunst, diagnosed on the lower end of the autism spectrum, struggles to socially connect with peers and tends to obsess over thoughts for long periods, his parents said. Like many people on the spectrum, though, he excels at tasks that require attention to detail, repetition, and little socializing. This led him to fall in love with mowing lawns at a young age and to start his own lawn care “side hustle” around the time he was 8.

“I think I just like the final product, knowing everything was done right,” Kunst said about lawn care. “Because not everybody does the job right.”

DeVaux hired Kunst last year and said he has turned into “one of my better employees” and “just one of the guys” among the course staff.

“On my whiteboard, I have written, ‘attention to detail.’ That’s very important in our industry,” DeVaux said, “and he’s perfect for that.”

But despite the attributes Kunst and other young adults on the spectrum offer — highly diligent, intolerant of mistakes, and honest to a fault — Kunst’s success is an exception. As more and more students with autism graduate out of public school systems, many are struggling to transition into the workforce and find employment, advocates and families said.

“There are many, many young adults (with autism) in their 20s, perfectly capable adults, that are at home sitting in their parent's cellar playing video games not knowing what to do with themselves,” said Sharon Cable, a Canton resident with an unemployed 26-year-old son on the autism spectrum. “And it’s getting harder and harder. Each year they sit there and it’s getting harder to get them out.”

National data indicate that the vast majority of adults with autism are either unemployed or underemployed, with estimates ranging to as high as 90 percent, according to Autism Speaks, the country’s largest autism advocacy group.

“Here’s Connecticut, we’re spending all of this money on these kids while they’re in school, and when they age out they are sitting at home watching television. It’s crazy, and it’s not a good return on your investment,” said Leslie Macnab, director of Wallingford-based Autism Services and Resources Connecticut (ASRC), the state’s first exclusively autism advocacy organization.

A 2015 report published by the A.J. Drexel Autism Institute found that 20-somethings with autism are less likely to be employed than peers with other disabilities, with 58 percent employed at some point within three years of graduating high school. By comparison, 74 percent of young people with intellectual disabilities, 95 percent with learning disabilities, and 91 percent with a speech impairment or emotional disturbance were employed in their early 20s.

For many people on the autism spectrum, the biggest barrier in gaining and retaining employment isn’t developing technical skills, but the “soft skills” needed to navigate the social demands of a job or application process, something more difficult to do with autism than other disabilities in many ways. Individuals on the spectrum can vary enormously but all have some kind of social skills impairment. An estimated one-third of people with autism are “nonverbal,” meaning they don’t speak at all.

“If they don’t have social skills, they’re not going to hold that job for very long. They’re very talented, and they can do a task, but a job is so much more than that, a job is also navigating all that social stuff,” said Delia Thomas, a New Hartford resident with a 22-year-old daughter on the spectrum.

Under the federal Individuals with Disabilities Education Act, public school districts must provide all special education students with transition planning services as part of their individualized education plan (IEP). Although IDEA lays out uniform guidelines for these transition services — they must be individualized, begin by the time the student turns 16, be based on the student’s strengths and interests and include opportunities to develop skills for work and community life — the quality and effectiveness of these services can vary among districts and students, parents and advocates said.

“The goal of IDEA is that, at 21, these individuals are going out into the world and contributing, but they aren’t,” Thomas said.

Because schools stop keeping tabs on students after they graduate, it’s hard to evaluate the effectiveness of in-district transition programs or hold districts accountable.

“A lot of this is kind of hidden. We don’t exactly know how many autistic students come through the system and end up unemployed,” said David Kearon, director of adult services for Autism Speaks.

After graduating, many young adults with ASD are prone to becoming isolated because they’re no longer in school all day with their non-disabled peers, leaving them little opportunity to practice socializing or remain connected.

“The difference in someone’s life before and after they turn 21 is so extreme,” Thomas said. “There’s no such thing as inclusion in the real world, there just isn’t.”

Once a young adult with autism struggles to transition and becomes isolated from their community, it can be difficult for families to help them move toward independence.

“They don’t have that feeling that ‘I have to move out of my parents’ house,’ that motivation may not be there and at the same time they may have a high tolerance for seclusion,” said Dr. Jim Loomis, a child and family psychologist and the director of adult services at the Center for Children with Special Needs in Glastonbury.

“They are quite content (living in their parents’ house). I see people in my office that are 55 or 60 years old that have been doing that their whole life. The problem then is that the family can’t take care of them and they’re missing,” said Loomis, who also sits on the state’s Autism Spectrum Disorder Advisory Council.

Employers unprepared

If growing populations of young adults with autism are going to gain employment levels necessary to become independent and have a quality of life, advocates say that, in addition to schools better-preparing students for employment, it’s going to take a societal shift in which employers are more willing and equipped to take chances on candidates with autism.

“We have to prepare people with autism for the world, but the world also has to prepare itself for people with autism,” Macnab said.

A 2017 report published by Autism Speaks estimated that 500,000 people with autism would enter the workforce by 2027, and those numbers are expected to climb over time as autism’s prevalence grows.

In most cases, employers don’t know what to do when an employee with autism acts inappropriately in the workplace setting, behavior that can range from making an inappropriate comment, to spending long periods in the bathroom because they’re anxious, to a more serious crisis.

“The employers do take on a certain amount of risk employing people because they may not necessarily act appropriately in a social setting. And then how do you sit down and have that conversation?” Macnab said. “If you’ve never had an experience, you’re like, ‘Oh well, what am I going to do, and this person’s weird.’ ”

Preparing someone unfamiliar with autism for how to handle it is difficult because people on the spectrum can vary greatly, something that sets it apart from other disabilities.

“If you see one person with autism, you’ve met one person with autism,” said Dr. Linda Rammler from the UConn Center for Excellence in Developmental Disabilities.

It’s because of this diversity that school districts must “think outside the box” and take an individualized approach when preparing high school students for employment, families and advocates said.

“It’s really about figuring out what their strengths and weaknesses are what they have propensity for as far as a job,” Macnab said, “and then create transition plans around that and not what happens nowadays where schools have a cookie-cutter transition program where everybody goes into a program and does six months at Stop & Shop.”

Finding a job that students are interested in is crucial, Thomas said, because “part of being on the spectrum is if they don’t want to do something, they’re not going to do it.”

“They don’t get that that’s just part of their job,” she said.

Some organizations offer families help carving out “customized” jobs for people with autism based around their strengths and weaknesses. But it’s virtually impossible to create enough customized jobs to employ today’s workforce.

“There are the individuals that can make the leap and get a job at Stop & Shop and be included but that percentage is so small,” Thomas said. “There really aren’t jobs in the typical world for people with disabilities.”

In finding employment, even basic things like transportation can be a hurdle for young adults with autism, many of whom don’t drive and don’t have access to public transportation.

“They could be really qualified for a job five towns over, but how is that person getting there? Are mom and dad going to leave work early every day?” Macnab said. “There’s a lot of pieces about employment that you and I take for granted.”

Advocates also anticipate the economic damage done by the COVID-19 pandemic, which has caused unemployment rates not seen since the Great Depression, will make the uphill battle toward employment even steeper for people with autism.

“It’s already hard for these kids to get employment … It’s going to be even harder going forward,” state Rep. Cathy Abercrombie, D-Meriden, said.

In addition to a shrinking job market, health restrictions in place during the pandemic also present complications for employers willing to hire a person with autism. For example, many people with autism struggle to wear masks because they’re highly sensitive to touch, particularly to the face.

Sharon Cable, parent of a 26-year-old man with autism and coordinator of support services for the Focus Autism center, speaks during an Autism Speaks and Autism Services & Resources Connecticut forum at Masonicare at Ashlar Village in Wallingford on Feb. 8. | Bailey Wright, Record-Journal

Depending on their needs, some workers with autism may have an aide accompany them, which creates obstacles for social distancing.

‘Sheltered workshops’

For some families struggling to give their young adult with autism a purposeful way to spend time, the solution has been what are called “sheltered workshops,” which are segregated work environments, often run by nonprofits, in which people with disabilities perform basic tasks for a subminimum wage.

Sheltered workshops are allowed by language in the Fair Labor Standards Act of 1938. The workshops have been controversial within the autism and disability communities over the years, with some arguing they take advantage of people with disabilities.

“What we find is that not everybody in there is the most impaired,” Kearon said. “There are people there who could definitely be working out in the community, and we realize, ‘Holy crap, they’ve been there for 20 years.’ That’s not all that unusual. It should be there for the most severely challenged, but not everyone fits that.”

Others, including Thomas, whose daughter works at a sheltered workshop, say they are an important stepping stone for people with disabilities to work toward competitive employment. Thomas’ daughter works part-time at an art gallery in New Haven caning and repairing chairs. The job, Thomas said, allows her daughter to do something she enjoys while developing life skills and learning to be responsible.

“The most she’s ever made in a week is $58, but it’s not about the money, it’s about doing something meaningful and doing something she enjoys,” Thomas said. “Our long term goal is competitive employment, but she’s way behind in her maturity level, so it’d be like asking a 12-year-old to work competitively. You have to do it in baby steps.”

West Hartford resident Weller Simmons discusses the transition from grade school at an Autism Speaks and Autism Services & Resources Connecticut forum in February. | Bailey Wright, Record-Journal

Over the years, many states, including New Hampshire, have passed legislation prohibiting employers from paying subminimum wages, effectively banning sheltered workshops. Although these decisions have been politically palatable, advocates fear the pendulum might be swinging too far.

“The problem with eliminating something like sheltered workshops is if you don’t have a viable alternative in place, you are just pulling the rug out from underneath these families,” Kearon said. Roughly 1,760 disabled workers in Connecticut are legally permitted to be paid subminimum wage under the Fair Labor Standards Act, according to the Connecticut Business & Industry Association. Most of these workers are employed in sheltered workshops run by nonprofits.

“I’m no fan of these places, but if they close those down, what are those (people) going to do tomorrow?” Kearon said.

Speaking earlier this year at a forum on people with autism transitioning into adulthood, Kearon warned families that Connecticut may too soon pass legislation to ban sheltered workshops.

“This is a tide that’s coming nationally, and we need to recognize what’s going to happen here in Connecticut, in all likelihood, and how we can best set ourselves up for success,” Kearon said at the forum held in February by ASRC at Masonicare at Ashlar Village in Wallingford.

Dozens of families with young adults with autism either in the workforce or preparing to enter the workforce traveled from all over the state to attend.

“You could just feel the desperation in that room, and it makes me really sad,” Thomas said.

One avenue families can turn to for assistance with job placement right now is the Bureau for Rehabilitative Services, which offers help with the job search, application, and interview process. But the catch, parents said, is that BRS requires individuals to come to them ready for competitive employment.

“They show up on the doorstep and BRS could say, ‘No, they’re not ready,’ and that’s the fault of the school system,” Macnab said. “It’s really about how we get school systems to have in their transition programs real experience for employment.”

Untapped potential

Connecticut can help improve autism unemployment numbers, Kearon argues, by providing stronger networks of jobs and coaches, creating autism-specific vocational rehabilitation programs, and opening up new employment pathways by making career and technical education more accessible for students with autism.

“We want to increase the availability and diversity of post-secondary education,” he said. “They should not be limited to four-year universities with enormous price tags,” which don’t even include the additional cost for autism-support services.

With a growing number of manufacturing businesses in Connecticut facing a labor shortage, the state has an opportunity to help people with autism fill these jobs, he said.

“Companies all over the place are desperate — they want to grow faster but they can’t find the workers,” Kearon said. “Well here we are with a largely untapped labor pool that we happen to know has extraordinary workers.”

Some of those companies, including Pratt & Whitney, have even launched autism hiring initiatives over the years, Kearon said

“There’s a ton of great businesses in Connecticut that have significant labor needs over the next decade,” Kearon said. “… We just need those state supports, so we need the job coaches, we need the job developers — who’s going to help make those matches successful? So I don’t think we should write off Connecticut. It’s got a lot going for it, too.”

Based on his experiences managing Kunst, DeVaux believes other employers should be open to hiring candidates on the spectrum.

“He’s worked out wonderfully and everyone on my crew feels the same way,” DeVaux said.

Kunst dreams of one day becoming the superintendent of a golf course and achieving independence from his parents. To get there, he knows he must continue working on socializing with peers in order to be able to manage others one day.

“We’re hopeful there will be a point where he’ll own his own home,” Erich Kunst said. “He’ll probably never live far from us, but he’ll be parking his own car in his own driveway.”

mzabierek@record-journal.com203-317-2279Twitter: @MatthewZabierek


 

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