I’m the parent of an young black man whose lack of social skills scares people. He is an easy target for molestation, has no understanding of community danger and if a police officer yelled “Stop” he would not. This is what parents caring for adults are faced with. When society offers families no choices, well intentioned parents can make bad decisions. Faced with nothing but bad choices, what would you do? Personally. if my choice is to find a way to keep my son in my house - in ways that society may view as abusive - where I can manage the danger, or treat him like a typical child and risk him wandering into the community I’m going for keeping him in my house. For parents faced with impossible decisions I can understand them believing any restrictions they create in their home would be less than those their child would face in Jail or an institution.
Coping with adult children’s autism, parents may face ‘least bad’ decisions
For parents like Mark and Barbara Bucknam, the transition to adulthood for autistic children is filled with gut-wrenching choices and challenges.
John rides in the back of the car with his mom after camp. Over the next 10 years, 500,000 children with autism will become adults, according to Lisa Goring, a top official at the advocacy group Autism Speaks. Evelyn Hockstein/For The Washington Post
Adult twins with autism locked in a barren basement room every night. No lights. No bed. Their parents charged with abuse.
The criminal allegations against Janice and John Land that erupted last week in Montgomery County have captured the attention of many — but no group more so than other parents who are caring for the growing number of autistic children entering adulthood. “We can’t condone their choices,” says Mark Bucknam, a professor at the National War College who lives two miles from the Lands. Court papers say that the young men were kept in a room with no working lights and a comforter on a bare tile floor. “But it’s possible that, in their minds, this was the least bad way to deal with this,” Bucknam says.
As he speaks, his 18-year-old son John starts to pace and moan in the kitchen. John typically won’t sit down for dinner until he and his parents are around the table, holding hands, his father saying the blessing. Mark walks toward the kitchen, past the locked front door, the locked door to the garage, the locked door to the basement. Those barriers, along with a tracking device John wears, the burglar alarm and the fence around the house, are designed to keep him from wandering off.
John Bucknam wears a tracking device on his ankle so he can be found in case he wanders away from home. His parents have a series of locks on their doors to keep John from wandering off. (Evelyn Hockstein/For The Washington Post)
But sometimes, even that isn’t enough. Three years ago, wearing green pajamas, John made his way to a Metro train platform four miles away just before a train came barreling into the station.
For parents like the Bucknams, their children’s transition to adulthood is filled with gut-wrenching choices and challenges. The assistance connected with high school programs goes away. The best adult services often are at the end of long waiting lists. The pressures mount for parents to prepare for life after they’re gone. In the world of autism, this transition is known as going over “the cliff.” “You’re in a whole different world,” Barbara Bucknam says.
And their ranks are poised to grow. This year, the Centers for Disease Control and Prevention released figures showing 1 in 58 children in the United States have Autism Spectrum Disorder, a term that captures the wide range of ways autism affects children. That was a 30 percent jump from two years earlier and more than double the rates from six years before that.
And over the next 10 years, 500,000 children with autism will become adults, according to Lisa Goring, a top official at the advocacy group Autism Speaks. “There are not enough services. It’s a real problem for families.”
Fierce advocates
In places like Montgomery, parents such as Darla Tagrin must be ready every day to advocate for their children so they can make use of government-funded programs.
For 12 months, Tagrin tried to get her 22-year-old daughter transitioned from high school to a day treatment program or a supervised job. But one facility after another turned her daughter away, Tagrin says, something she attributes to her daughter needing almost constant one-on-one attention. Tagrin recently enrolled her daughter into a program that she helps administer: lining up the therapists to come to her home or take her daughter into the community.
“Managing this is a full-time job,” Tagrin says. “You have all the duties of a company owner. If you already have a full-time job, it can be nearly impossible. But this program is a lifeline for us.”
Tagrin and others say that as family members with autism age, it becomes even more important to refuse to take no for an answer when seeking services for day programs or housing facilities. “You kind of have to fight for things. If one person says no, you have to keep calling,” she says.
Comparing her situation with that of the Lands’, Tagrin says the Lands could have made use of plastic mattress covers or perhaps a room-monitoring system. Still, she knows how challenging her nonverbal daughter can be. “And it doesn’t sound like she’s nearly as tough as those twins,” Tagrin says.
In the best cases, parents find that the right adult programs can exceed the care their children received in school. Kathy Page, another Montgomery resident, is the parent of 22-year-old and 24-year-old sons with autism. Their high school administrators helped transition them into “day-habilitation” treatment at a nonprofit group called Community Support Services.
“They’re helping them develop as human beings,” Page says.
At home, she has discussed the Land case with her husband, Tom. Maybe the dark, basement room was the Lands’ way of keeping their children out of an over-stimulated environment, he suggested.
Page says she understands the frustrations the Lands must have felt. But she ultimately thinks they could have done more — made another call to get help or redoubled efforts to bring in a therapist who might have taught the twins to move around the house more safely.
“I just kind of feel in my gut that they gave up on them,” she says.
Insurance coverage
Every day in Montgomery, Laurie Reyes has a direct view of challenges facing families. She is a county police officer whose job is to help vulnerable residents’ caregivers. On average, Reyes says, two or three people with autism wander away from their homes every week.
The officer works with families to employ a “layered” approach to keep kids and adults safe: Identification bracelets, information letters given to neighbors, in-home therapists, alarm systems, electronic tracking bracelets. But even the best defenses don’t always work.
Reyes sees a difference between children who go missing and the adults who do so.
People are more apt to intervene when they see an 8-year-old walking down the street. But someone older or full-grown, even if acting erratically? People might drive right by, too intimidated to approach. “If you have a little child, people are going to jump to help,” Reyes says. “That’s a huge dynamic.”
The officer has worked with families of autistic children for 10 years and has learned to broaden her duties. She trains patrol officers in the best ways to communicate with people who are autistic. She works with social workers to try to get kids and adults into programs.
And she’s even testified to support legislation that would prompt health insurance companies to pay for in-home alarm systems — asserting that in the simplest of terms, that can be a medical need. But to date, she’s gotten insurance payments for only two systems.
“It’s a fight to get that coverage,” Reyes says.
At ‘substantial risk’
As for the criminal case against John and Janice Land of Rockville, new details in court filings last week paint an ever-troubling picture as social workers moved to become the twins’ legal guardians and place them into a group home.
It was a team of police officers that discovered the basement room where the twins slept. Early the morning of July 17, a SWAT team entered the Lands’ home, where at least two of their other sons live, as part of an unrelated marijuana case. Officers came upon the locked room, went inside and found the twins. “They were found in feces and urine,” county attorney
Peggy Odick wrote in court papers, asserting that the locked room amounted to imprisonment that left the twins at “substantial risk of death or immediate and serious physical harm.”
The parents have not been available to comment. But John Land’s father — John Land III — has said the criminal allegations are overstated given the challenge the twins presented. On Friday, he said the young men had been toilet trained in the past but had regressed. Because of that, his son had to remove furniture from the basement room, he said.
Land III says that keeping the twins locked in the basement prevented them from going through the house at night and turning on water faucets or the oven. “They had to be confined, held by the hand or watched within arm’s length — 24/7.”
Land III says his son and his son’s wife have expressed fatigue over caring for the twins: “Their hearts don’t want them to go, but their heads are telling them it just might be too much.”
Eyes on the future
Inside the Bucknams’ home, also in Rockville, Mark and Barbara are trying to transition their 18-year-old son to his adult years. Two big questions and challenges: Can they find an agency that will help John find a supervised job? And should he be moved into a group home to learn how to cope after they’re gone?
Their efforts are an extension of what the couple has been doing all of John’s life. After he was diagnosed with autism, Barbara phased out her work as a physician to devote herself to overseeing his care, to managing the tangle of insurance claims and paperwork that goes along with it. These days, the Bucknams have begun looking at programs that might be able to help John find a vocation.
But his tendency to wander off presents a challenge. His communication — largely through single words to express needs, such as “computer” or “food” — could make working directly with the public difficult.
But John’s ability to learn can also be inspiring. His innate desire to stack and organize objects could lend itself to a position at a warehouse. “We hope one of these agencies will pick John,” Barbara says. She would like to see him eventually try a group home. Mark is not sure that he could function well enough, and he wants to manage everyone’s expectations.
“All we want,” Mark says, “is for our son to be safe and happy.”
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