Date Published: September 24, 2020
When Joseph Beno began kindergarten, he struggled to speak and hold a pencil. Half-way through that year, his school evaluated him for a disability. At a meeting to discuss their results, school officials told the family his diagnosis: autism. “That was a total shock,” says his mother, Jeanmarie Beno.
By that time, he had missed out on preschool early intervention services. He also did not receive Applied Behavior Analysis therapy for autism, and his Texas community had few autism resources. But his parents did not focus on that. Instead, they continued to do what they had always done: raise him exactly like his two older sisters and younger brother.
Today, Joseph is 24. He has a car, a full-time job at the corporate office of a large business, and friends. He and his family joined SPARK, the largest study of autism, to contribute to knowledge about autism. Joseph and his parents shared their story to provide hope to families who are beginning their autism journey.
The First Signs of Autism
Joseph began to show symptoms of autism as a toddler. He lost speech, lined up toys, flapped his hands, and avoided eye contact. But he did not have other behaviors – wandering away, tantrums, or aggression – that are often found in youngsters with autism. In fact, he was very well-behaved, his mother recalls. “We just thought he was kind of quirky,” she says. Before he started school, no one had mentioned autism as a possibility, and she didn’t know anyone who had it.
After his diagnosis at age 5, Joseph got an Individualized Education Program that included speech therapy, extra help in the classroom, and help with fine motor skills at school. Within a year or two, he was speaking in sentences.
As he grew, his parents had the same expectations for him as his siblings. That included finding a job while in high school. “The way I was brought up, as soon as you were old enough to work, you got a job,” his mother says. “Once our children were 16, they were expected to work part-time.”
Employment and Autism
Unemployment is usually high in the autism community, particularly among young adults. More than half of autistic adults were not working or attending a college or trade school in the first two years after leaving high school, according to research. By comparison, young adults who have other developmental conditions were more likely to be working or in school.1
Joseph did not attend any job preparation programs in his school or community. However, his parents helped get him ready for job interviews, as they had their other children. When he was 17, he attended a job fair for a local supermarket. He got a job as a courtesy clerk, bagging groceries, helping customers, and collecting shopping carts in the parking lot.
Also at 17, he got a driver’s license, a complicated skill for many on the autism spectrum. “Of our four kids, it took him about two times as long to really learn how to drive,” father Joe Beno says. “But I can tell you right now, he is the best driver of all four of them.”
He worked at the supermarket for two years in high school and two years after graduation. During that time, he took part in church activities, along with a social group for teens and adults who have autism. Although he can be sensitive to loud noises, he also enjoys going to concerts and listening to music by Saint Motel, New Politics, and Bad Suns.
One day the autism social group took a tour of a corporate office of a food business. There, Joseph met a supervisor, and he ended up landing a full-time job with benefits. He drove his red Ford Escape to his new job, where his duties included keeping the offices orderly, stocking office supplies, and working in the mailroom.
And one more thing: “I brew the coffee,” he says. Asked if he makes a good cup of coffee, he says, “I never heard any complaints.”
He was furloughed earlier this year due to the COVID-19 pandemic, but his office stays in touch, remembering his birthday and job anniversary date.
Discussing the Autism Diagnosis
The Benos say that they were so committed to raising Joseph like his siblings that they waited to tell him about his diagnosis. Although many families tell children at a young age, Joseph never asked about his differences, his mother says. And the Benos did not want him to think there was anything beyond his reach.
A few years ago, they became involved in autism research. They joined the SPARK study after Jeanmarie read about it on Facebook.
When Joseph was in high school, he joined a different autism study at a university hospital in Dallas. While they were returning from a study appointment, his mother decided it was time. “He was already on track to graduate high school, he was driving, he had a job. And I figured that was a good time to have the talk. So I said, ‘Joseph, do you know why you come here and they’re studying your brain?’ He said, ‘no.’ I said, ‘It’s because your brain works a little differently. There are some things that you struggle with, and there are some things you’re really good at, and it’s called autism.'” Then she told him he did not have to immediately tell everyone at school and at work that he has autism.
“Yeah,” Joseph replied. “Because that would be bragging.”
“And that’s when I knew that I chose the right time to explain it to him,” Jeanmarie says.
1. Shattuck P.T. et al. Pediatrics 129, 1042-1049 (2012) PubMed