Autism after 21: Adults struggle to find employment, housing

It’s tough for someone on the autism spectrum to find an apartment and job. First, they have to find a good fit. Then, the interest has to go both ways.

Neither part is easy.

“When we go apartment hunting with kids, a lot of the landlords want BYU students because they have these expectations of how BYU students act and their standards,” said Kari Bushman, off-campus housing specialist at ScenicView Academy, a nonprofit school in Provo that helps people on the spectrum adjust to adult life. “That is their ideal renter, although they are not necessarily BYU-approved housing.”

When someone on the spectrum may look a little different and seem a little different, it can be hard to charm a landlord into offering a lease.

“It is unintentional discrimination of, I have a one-bedroom apartment and I have to choose between the cute little BYU couple and this guy who weirded me out,” Bushman said.

Adulthood comes hard at those on the spectrum, as they experience a drop-off of services they qualify for that’s referred to as the “services cliff.” For those who are higher functioning and likely pass as neurotypical, they’re expected to go out and live similar lives to their peers, complete with a career and a place to live.

It’s a time of jarring transitions for a population that tends to be highly dependent on routines, is prone to anxiety and might not self-advocate.

More than a third of people ages 19 to 23 with autism don’t have a job or have additional education after leaving high school, according to a study that appeared in 2012 in the journal Pediatrics. Additionally, youth who are on the spectrum have the lowest rates of employment compared to youth with other disabilities.

Additionally, only 35 percent of students in the Passages program, a program for college students with autism at Utah Valley University in Orem, had a driver’s license, according to the program’s 2015-16 annual report.

Multiple organizations are looking to boost employment numbers in Utah. This year, the Autism Council of Utah worked with the state Legislature to have April 21 named Autism After 21 Day.

Cheryl Smith, the founder and former president of the Autism Council of Utah, started the push after hearing about a similar day in another state.

As part of the day, the council is hosting a breakfast in Salt Lake City to show business leaders more about autism as part of a hope they’ll employ more people on the spectrum.

Smith said people with autism have between an 80 and 85 percent unemployment rate.

“Even if they are super smart and capable, they can’t pass an interview,” Smith said.

She said people with autism might come across as odd or different during a job interview, and might struggle to keep a job.

A good start, she said, is increasing awareness.

“These guys can make awesome employees,” she said.

At the breakfast event, Smith plans to share a story of an employee at a car dealership who has autism. The employee handles paperwork, likes cars and is good at finding errors.

At ScenicView Academy in Provo, which can provide housing for people with autism while they attend, provides therapy and teaches multiple skills such as social experience, a large focus is on giving job experience to high-functioning individuals with autism.

Students handle multiple tasks around the school, from custodial work to doing the landscaping for both it and nearby businesses. They are also given internships from the school to do work for various areas and businesses in the community to build ties from both sides of the issue.

“For many of our students, this is their first opportunity to have a bona fide job,” said Marty Matheson, the executive director of ScenicView Academy.

He said even if the students pursue other industries, it still gives them experience. The program has paid off — both the cities of Provo and Orem have hired students as custodians.

Ben Thompson, a 25-year-old student at ScenicView Academy, has worked in various different stations around the school, including working in the kitchen washing tables and doing dishes, doing landscaping and working a janitorial job. He’s also completed an internship at Utah Valley Hospital in Provo doing floor care, and currently works at FedEx and the Provo City Library.

As a self-proclaimed bibliophile who read 60,000 pages last year, his dream job would involve working around books.

While working with custodial services at ScenicView Academy, he started a system to keep track of which chairs had been cleaned. His attention to detail is a tool autism has given him that he’s learned how to use.

“It’s something where I can feed some chaos into my subconscious and trim it into something organized,” Thompson said.

Diagnosed with autism as an adult, he’s currently living on the school’s campus and has his eye on graduation. But he doesn’t anticipate he’d disclose his diagnosis to a future employee unless he needs to.

“I think I am high enough functioning where I could qualify as normal,” Thompson said.

It’s the same decision 35-year-old Bryan Johnson has also made. Johnson, who was also diagnosed as an adult and lives and attends ScenicView Academy, has done custodial work for the school and plans to start an internship soon. He’s previously worked answering calls for a disability law firm and hopes to do more with technology.

He likes doing creative work, is driven by helping people and can translate jargon into understandable language.

Johnson started attending the school at the urging of his parents after he was part of a large layoff from his previous job.

He said his autism means he works a little slower than a neurotypical employee. He’s also not a morning person, so the school has allowed him to work a night shift doing custodial work.

An adult with autism, Jared Stewart is also the director of education at ScenicView Academy. He said those with autism process things more deeply, which can make learning a new task take longer than for someone who is neurotypical. But once the task is learned, the person with autism can do it quickly. Employees with autism are also unlikely to pick up on hints.

Whether or not someone on the spectrum is employed also shapes the perception about them.

“The difference between autistic and eccentric is if you have a job,” Stewart said.

Underemployment is another a problem in the community, as people in the spectrum might stick with the same job instead of moving on to a better one, or they might not get a better job they’re qualified for because they might not do well at a job interview.

But autism also brings strengths. Individuals with it are logical, welcome rules and routines and have a sharp attention to detail.

Stewart said progress to increase the autism employment rate is going to have to come from both sides — those on the spectrum, and employers who aren’t. While businesses are going to have to accept some differences in employees on the spectrum, recognize their strengths and understand that everyone with autism is different, people with autism are also going to have to self-advocate for themselves.

If someone with autism gets turned down for a job, they could give up the search.

“Sometimes, our problem with the unemployment rate for these guys is they don’t go out and look,” Smith said.

She said a fear businesses have is also that if they hire someone with a disability, then they can never let them go.

Getting an apartment is difficult, but finding one that is autism-friendly is also a challenge. Autism also often comes with sensory sensitivities, from an aversion to loud noises, or feeling uncomfortable in certain fabrics.

When Stewart was in a hotel for a conference, he found himself losing his balance every time he looked at the carpet. So he started looking at the ceiling to get around.

“I couldn’t walk on it,” he said.

Most people don’t notice the sounds of lights, but a buzzing light or the sound of a motor or a heater going by can affect someone with autism. And while a neurotypical person could grow accustomed to hearing a train roar by, someone on the spectrum won’t.

“What might seem like a soft hum to some of us might be a very loud, obtrusive sound to someone on the spectrum,” Matheson said.

Noises from overhead lights are one of dozens of things the academy had to look into when it started. One wall is painted to draw students’ attentions, computers are moved to the edges of the small rooms and the door is at the front so students can see it.

Living with several roommates has become a necessity for many in Utah County’s pricey housing market, but that’s not possible for many people with autism.

Bushman said not everyone on the spectrum is good with roommates, but they often can’t afford to live in a private room or by themselves.

“A lot of these kids have to make the decision of, do I want paying for rent, or do I want to live with a roommate so I have help paying for rent,” Bushman said.

They don’t always make the best roommates, either. Bushman said people with autism can be unintentionally miserable to live with because they don’t always have the skills to have tough conversations, or even initiating easier ones, like asking who is in charge of taking out the trash or where they should put dishes.

They can get government assistance, but that means they’d have to live alone, which can socially isolate them and lead to depression.

“It almost reinforces the problem,” Bushman said.

Johnson has been learning more about living independently and has had a previous roommate with the same background as him.

“I knew he was on the spectrum before I knew I was on the spectrum,” he said.

Johnson used to be more sensitive to sound and couldn’t handle fireworks or airport intercoms. So when his diagnosis came, it wasn’t too much of a surprise.

“It explained some things,” Johnson said.

He’d prefer to have roommates in the future. While at ScenicView Academy, he’s gotten better at keeping a clean living space and has opened himself up more to cooking.

Thompson, too, has become more aware about keeping his living area clean—something he hasn’t always been good at.

Although he’s introverted, he’s lived with roommates before.

“I think I got along very well with my roommates,” Thompson said.

Matheson said he foresees a need for Utah to follow other communities’ lead and construct autism-friendly housing.

He’s heard common stories of people on the spectrum hiding in their parents’ basements, scared.

“I believe that living independently brings empowerment and it empowers all individuals, and it empowers those on the spectrum,” Matheson said.

While ScenicView Academy has been around for 16 years, Matheson said movements across the country for places like it are just now starting as more and more children with autism reach adulthood.

And it might not be enough.

“There is so much more need that needs to be addressed, and not just the transition cliff, but around the lifespan,” Stewart said.

The Autism Council of Utah is also looking to build a housing facility, but there are roadblocks due to changes to Medicaid rules.

“We can’t begin to build something because no one can tell us what the rules are,” Smith said.

The proposed facility would include housing, along with a day program that includes vocational skill training.

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