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Focusing on capabilities helps people with autism find their place
The Day - 7/1/2023
Jul. 1—EDITOR'S NOTE — To read more disability-related stories, read the next edition of More than a Month coming out on Sunday, July 9.
Larry Pepper glides his hands along the piano as he plays Beethoven's "Für Elise," one of his favorite tunes, by memory at his apartment in Madison.
"It makes me feel relaxed," Pepper said about his ability to play the piano, with or without a musical score in front of him. "It makes me feel more extroverted, like I'm playing in a concert hall."
A casual listener would say Pepper, 67, has an extraordinary talent, one which years ago gained him the trust of former piano teacher Sarah Meneely-Kyder of Lyme, who always asked him to play last during recitals, knowing he was her most accomplished student.
But Pepper has one other thing that sets him apart. He, like millions of others in the United States, is on the autism spectrum. The latest statistics say that one out of every 36 people in the country is considered to be on the spectrum, and boys are four times more likely to be diagnosed than girls.
So, as more people are diagnosed with Autism Spectrum Disorder, it's appropriate that society and specialists have started to concentrate less on autism's disabling effects (awkward social skills, difficulty reading body language and repetitive behavior) and more on people's abilities.
"There's less emphasis on it being a negative diagnosis to receive, and more focused on strengths and the abilities each autistic individual has," said Melissa Warner, supervisor of the Autism Center at United Community and Family Services in Norwich, in an email.
And to encourage people with autism to live rewarding, independent lives requires two main emphases, said Kathleen Stauffer, chief executive of The Arc Eastern Connecticut: jobs and creating human connections.
"The prospect for individuals is much better than it was 20 to 25 years ago," said Cody Morris, an assistant professor in Salve Regina University'sDepartment of Psychology, who has an expertise in applied behavior analysis, a key therapy used to help improve the lives of people on the spectrum.
Morris said an autism spectrum diagnosis is now covered by health insurance in every U.S. state. To be on the safe side, check with individual insurers about specific benefits.
While the root cause of autism is still not well understood, some things have come into better focus, such as the fact that no connection has been discovered between childhood vaccinations and autism, according to a variety of scientific sources. It is believed that autism is caused primarily by genetic and environmental factors.
The autism diagnosis hasn't been around that long, about 80 years. The first person to receive the diagnosis, Donald Triplett, died last month in Mississippi. Children are typically diagnosed at about ages 3 to 5, often due to low verbal skills or late potty training, but some aren't identified until their teenage years or even into adulthood.
Annie Calamari, clinical director of mental health services and program development at The Mayer Center in Essex, where many local parents go to diagnose and treat their autistic children, said early intervention offers the biggest hope for people on the spectrum. Just as important, she said, is to enlist parents in helping children succeed long term.
"Sometimes a parent needs to reconceptualize who their kid is," she said in a Zoom call. "You have to adjust those expectations. ... It's not easy to be a parent of a kid with special needs."
Elyse Landesberg of Waterford knows this all too well. Mom to Noah, a highly verbal 29-year-old who now works as a draftsman at Electric Boat, she became upset with clueless parents who couldn't seem to understand that a child on the autism spectrum will act differently from other kids even though they look the same.
"It was very painful," Landesberg said. "It's definitely harder (on parents of autistic kids) than for those who have children with an obvious disability."
While autism used to be split into categories such as pervasive developmental disorder and Asperger syndrome, the latest bible of diagnosis, the Diagnostic and Statistical Manual of Mental Disorders, now lumps all levels of autism into one spectrum. These can range from people who have little ability to relate to the world to those who might previously have been diagnosed with Asperger's because of their relatively high intelligence that is impeded by social deficits.
"Autism is very broad," Morris said. "There are a lot of different profiles of autism within that spectrum."
And that's where the difficulty comes in. Autism treatment doesn't lend itself to one-size-fits-all therapy, especially since the diagnosis often comes with a variety of other issues, including attention deficit disorder, physical deficits and intellectual disabilities. Autism can sometimes lead to splinter skills, where someone on the spectrum can be way above average in math or music, for instance, and behind in other areas.
Morris said the Centers for Disease Control has not identified a single medication with empirical evidence of treating the core symptoms of autism. Instead, any drugs prescribed to those on the spectrum treat the side effects of the condition, such as anxiety or difficulty completing school work.
Staying active, finding friendships and doing meaningful work for people who appreciate it makes a big difference for those on the spectrum.
At Puffin's Restaurant in Groton, the nonprofit Seabird Enterprises sees the effect of connecting people with autism to jobs every day.
"They just want to be like everyone else," said Jason Rivers, program director. "They really love getting a paycheck."
But Rivers said there is a long waiting list for people on the spectrum to get services. And many of the Puffin's workers, such as Steve Emblidge of Waterford, have worked at the restaurant as long as he has, 14 years, or longer, with no signs of wanting to quit. One day last month, Emblidge, a national swim champion in Special Olympics and the head server at Puffin's, was so busy waiting on tables that he barely had time to talk.
"These guys are so capable," Rivers said. "It's just mind-blowing at times."
Yet, according to the psychologist Morris, "Historically there have not been opportunities for many individuals with autism." Now, there are some opportunities, though he said supports are often lacking.
Kassidy Brown, chief executive of The Light House vocational education center based in East Lyme, said competitive employment is a huge goal, and not always attainable for every individual, therefore many people with autism rely on group employment at microbusinesses like Puffin's or the former Horses Healing Humans site that his nonprofit recently took over in Stonington. There, The Light House runs an Airbnb, a greenhouse and a commercial kitchen; other programs work on social skills and educational needs.
"All of our programs are bursting at the seams," he said.
Brown believes in competitive employment at full pay for many people on the spectrum, and he's had good success placing folks with small to midsize employers. He says many people on the spectrum are consistent and hardworking, and with today's assistive technology even if they are not good readers they can pick things up fast.
"With a shortage in the labor market, there's a lot more openings for employment," Brown said.
But as Stauffer of The Arc said, "Finding a job is easier than keeping a job," and people with autism often have a hard time with the social interactions that are so important to making a good impression. Unwritten social rules that are generally understood by most people often have to be explicitly stated to people on the spectrum, Brown added, and military-like orders from bosses often cause those with autism to shut down.
Stauffer quoted an author as explaining the problem this way: "Having autism is like being in a foreign land where they are speaking a language you don't understand."
Many people with autism also have difficulty with transportation, since most do not drive. This is another impediment to employment, as people have to get training on how to use public transportation and Ubers. Again, there usually isn't enough funding to serve everyone.
Not everyone on the spectrum may be ready for competitive employment. Some people with intellectual disabilities attend programs at Riverview Farm in Uncasville.
"We aim to be the best six hours out of every day," said Ryan McCarthy, program manager.
Four horses on the farm are center stage on the 3-acre property abutting the Thames River, an idyllic spot where people with intellectual disabilities hang out with friends, tend to the plants, collect eggs from the chickens, listen to music, enjoy yoga and work in the woodshop. Several clients work in the stables and help groom the horses, with help from staff.
"Socialization is a huge piece here," McCarthy said.
Many of the clients go on outings, which include trips to Mystic Aquarium, Captain Scott's restaurant in New London, local libraries and the Waterford Community Center. Some help sell food and plants at the Norwich Farmers Market, while a landscaping crew regularly goes to homes in the area that need mowing and weed whacking.
One of the landscapers, Jayke Ashcraft, 23, also works in Plainfield at Seabird's Victorian Restaurant and Bakery, where he waits on customers, taking orders on an iPad point of sale system.
"Jayke does an awesome job," McCarthy said.
"I learn from the best," shot back Ashcraft, who just graduated last year from the Groton Transition Academy.
Those who work with people on the spectrum say it's important for parents to insist on transition planning at least a year before students' high school careers are set to end (many get their stay extended to their early 20s in order to graduate).
And then there is the question of housing for adults with autism. Some live in group homes, others can live in their own apartments if they have the skills for independent living, and others live with their parents.
"People with autism or IDD (intellectual and developmental disabilities) want their own life," Stauffer said. "I heard a statistic once that 70% of young people living with autism want their own apartment, and 70% of parents don't want them in their own apartment."
But parents know they won't live forever, she said, so helping get their children to be "optimally independent" should be the goal. She pointed to an Eastern Connecticut Housing Opportunities development nearly complete on Bayonet Street in New London, where a quarter of the units are set aside for those with disabilities, as a response to the current need for independent living among those with autism.
"I'd like to see a whole lot more of that happening," Stauffer said.
Pepper, the Madison pianist, has a place he shares with a roommate after having spent time in a group home that he didn't like. Supported by the Westbrook-based nonprofit SARAH, he also works at the Big Y supermarket in Guilford four days a week.
"SARAH is known for opening every door to making independence possible," said Pepper, whose late mother identified his disability early and resisted professionals' advice to have him institutionalized.
Pepper said he likes to make pancakes on Sunday morning and Spanish omelets sometimes as well. He walks everywhere, swims in the Sound, takes public transportation to museums and practices on the piano every day.
In the past, he has won 22 gold medals in state Special Olympics competitions, but at age 30 decided he had outgrown it. He still supports Special Olympics with donations, however, and cheers on fellow SARAH athletes whenever possible. He officiated at the 1995 World Games in New Haven.
Pepper said he appreciates all the support he has received to make an independent life, but still sometimes dreams about what it might have been like if he had been allowed to mix with other kids in school.
"Had I done my life all over again, that's what I would have liked," he said. "Back in the 1950s children with developmental disabilities like myself were judged not to fit into public schools. We were separated from other children."
Now there is a greater emphasis on inclusion, in school and the workplace. And people are now focusing on what folks on the spectrum can do rather than what their deficits are.
"There's better access, better funding, more providers and better approaches to provide quality services," said Morris, the psychology professor who works with those on the spectrum.
"There's a push for less institutional models," added Brown of The Light House. "We've done a really great job to move to more inclusive settings. ... It's been a real shift in the last couple years."
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