Shelly McLaughlin, program director for the Baltimore nonprofit Pathfinders for Autism, has a close relationship with her son Hunter, who lives with autism spectrum disorder. Local organizations like Pathfinders can help parents of adults with autism. Photo courtesy of Shelly McLaughlin

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Neither snow nor rain nor heat nor gloom of night nor COVID-19 can keep David Marmer from the Hunt Valley Giant supermarket, where he has worked for the past 11 years as a part-time courtesy clerk. With the assistance of a job coach from the Abilities Network, a Maryland nonprofit that provides support and community for individuals with disabilities, Marmer, 35, is responsible for bringing shopping carts left in the parking lot back to the store.

“It’s a job that plays to his strengths,” said Marmer’s mother, Ellen, 69. She and David’s father, Jay, both Pikesville residents, feel fortunate that their son, one of approximately 5.4 million Americans with autism spectrum disorder, has steady employment. After all, some estimates of unemployment rates for individuals with autism are as high as 85%.

April is Autism Acceptance Month, a time for promoting the full inclusion of people with autism spectrum disorder in our communities.

In recent years, numbers of autism diagnoses have skyrocketed;  one in 44 American children were diagnosed with the developmental disability in 2021.The rise in diagnoses has brought deserved attention to children with autism and their families.

Yet little attention is paid to individuals on the autism spectrum after they “age out,” at 18 or 21, of many government entitlements and school-based autism programs.

Aging parents must scramble to find resources for their adult children at a time when parents of neurotypical children are reaping the benefits of an empty nest.

“I had a parent once tell me that after 18, it’s a desert. There’s just very little out there,” said Peter B. Crino, M.D., Ph.D., professor and chair of University of Maryland School of Medicine’s Department of Neurology.

Crino directs the University of Maryland Center for Adults with Neurodevelopmental Disabilities and the Tuberous Sclerosis Complex Center of Maryland — the only regional centers in Maryland to focus specifically on adults with autism. The centers provide clinical evaluation, care and treatment for this vastly underserved and diverse population.

No definite cause identified

Autism spectrum disorder, or ASD, is defined by the presence of persistent deficits in social communication and interaction as well as restrictive and repetitive behavioral patterns. It affects individuals in myriad ways, Crino said, “from profound impairment — someone who is non-verbal, requiring full-time care — to a person who has a master’s degree but lives by themselves and is extremely uncomfortable with social engagements.”

Crino says that ongoing research into the causes of ASD have led to the “current thinking that autism is due most likely to a genetic disorder, either inherited or a spontaneous de novo gene mutation.”

Other risk factors include older paternal age; maternal exposure to certain infections; and the use of the drug Depakote, which treats bipolar disorder, migraines and epilepsy.

Crino pointed out that “some studies are supportive of the idea that early exposure to certain compounds, such as arsenic or cadmium or lead, can be a risk factor for developing autism.”

But Crino says that none of these exposures are a direct cause of ASD. On the other hand, Crino said, “We know for sure that, for example, the genetic disease tuberous sclerosis complex or the genetic disease Phelan-McDermid syndrome, both are known single gene mutations that have a 50 to 60 percent incidence of autism.”

Experts by default

Parents of children with autism are frequently forced to advocate for their children. In the process, many become experts on the disease and the services that exist to support people impacted by it. Some even make their careers in the field.

That’s the case with Trish Kane and Shelly McLaughlin, who both work for Hunt Valley-based Pathfinders for Autism. The organization was founded in 2000 by former Oriole B.J. Surhoff and other parents who came together to provide access to information and resources. [Read about Surhoff in “Ballplayer now autism activist” from the September 2021 Baltimore Beacon.]

Kane, 63, deputy director of Pathfinders, has a 28-year-old son with autism. McLaughlin, 54, Pathfinders’ program director, has a 20-year-old son with autism. Despite their vast knowledge about ASD, Kane and McLaughlin still worry about their adult children.

Kane’s son Eric is “low verbal,” said Kane, who lives in Parkville. “He does have words, but he can’t communicate in the way that most people would understand him.

“Eric can dress himself, but we have to lay his clothes out on the bed and prompt him to put everything on. And it takes a while, and sometimes clothes can be backwards and inside out. Zippers aren’t zipped, buttons aren’t buttoned.”

Though Eric has considerable challenges, he’s very intelligent. “He is fascinated with Disney, computers and foreign languages,” Kane said. “His brain is working in a creative, smart, intellectual way. But his ability to communicate any of that to us is very low and not functional.”

Before the pandemic began, Eric attended Itineris, a vocational and life skills development program for adults with autism in Baltimore. But after the program temporarily closed due to COVID, his father quit his job to stay home with Eric.

Recently, Eric has been able to return to Itineris on a very part-time basis, but most of his time is still spent with his father. Kane and her husband never leave their son alone, and they expect that he will live with them indefinitely.

She worries about what will happen when they are no longer able to care for Eric. “It doesn’t escape me that I need to think about where he will go at some point,” she said.

Kane has reason to hope: Itineris and other organizations are working to create housing opportunities for adults on the spectrum.

Leaving home

McLaughlin’s son Hunter has had a different trajectory. Relatively high-functioning, Hunter will soon graduate from the Harbour School in Owings Mills, which serves students with learning disabilities, autism, speech and language impairments and other disabilities.

He’d like to attend college and get a job, McLaughlin said, but he’s reluctant to accept the support he needs to be successful.

“He says, ‘I don’t want any disability services. I just want to be normal,’” McLaughlin, a Bel Air resident, said. “It’s heartbreaking to hear him say that.”

Though Hunter is very intelligent, his autism creates “challenges,” his mother said. For example, she worries that “if he’s on a job and they want him to do something a certain way, and in his opinion, that’s the wrong way…he may respond inappropriately. I could see him just walking out.”

McLaughlin believes Hunter would benefit from a job coach who “could step in and intervene if that kind of situation were to come up,” but Hunter doesn’t want one.

She also worries that Hunter’s executive-functioning challenges will interfere with his success at college.

“He has difficulty with being able to plan out projects and organize his work,” McLaughlin said. “But he will be very reluctant to apply for services through the Disability Services Office at a college.” Because Hunter is legally an adult, she can’t force him to take steps she feels would benefit him.

Hunter also has difficulty with social skills. Hence, “I worry a lot about how others will treat him. I worry when he goes places, are people going to make fun of him? Are people going to be mean to him? I worry that when he goes to college, will he get bullied?”

While McLaughlin says Hunter is not ready to live independently at this point, she is hopeful that, eventually, he will be able to live on his own.

Room in a group home

David Marmer, the Giant courtesy clerk, has been living in a Parkville group home for many years. He lives with other adults with disabilities, and staff helps the residents with daily tasks.

“He was one of three individuals in the state of Maryland [to get a group home placement] not coming out of foster care. I don’t know how I got to the top of that list, but we figured we’d better take it,” says his mother, Ellen.

The Marmers continue to take an active role in David’s care and have concerns about the long haul. After all, autism is a lifelong condition with no cure.

Jay Marmer said, “I remember my mother once telling me the happiest day in her life was the day that she knew she could die and her three children were going to be fine and capable of taking care of themselves.

“We’re never going to be there with David.”

Need information or resources for an adult with autism? Call Pathfinders for Autism at (443) 330-5341. Other programs and agencies serving autistic adults include: The UM Clinical Center for Adults with Neurodevelopmental Disorders, (410-328-6266); Itineris, (443) 275-1100; Maryland State Department of Education Division of Rehabilitation Services, (410) 554-9442; Johns Hopkins Adult Autism and Developmental Disorders Center, (410) 550-0104; The Arc Baltimore (410) 296-2272; and Developmental Disabilities Administration of Maryland, (410) 767-6500, health.maryland.gov/dda.