Autism Unveiled

A portion of my senior project from 2010, which was a long-form feature on three aging autistic teens, changes in governmental aid and the resulting impact on their family dynamics. This is one of the three features.

 

 

 

 AUTISM UNVEILED: LIFE AFTER 21
by Susan Varghese

 

In a quiet suburb of New York, where most teenagers are planning proms and contemplating their campus crushes, John Mancino*, 19, doesn’t fit in. It’s a cold January day and the police arrive at the home again. John has had another outburst. This time it’s the dining room windows.

“Autism” isn’t a label John likes. He’d rather be referred to as having “special needs,” and when he’s determined to do something, he does it.   Like one year, when preparing for a party he was throwing, John decided that guests were going to dance in the dining room. “When I wasn’t looking, he took all the dining room furniture and put it out into the yard. Everything,” John’s mom, Christine Mancino, says, holding photographs she took of the scene. “I send these [pictures] as therapy to people, ‘Here’s my dining room on the front lawn!’”

Mancino, a single mom, is facing the reality that many parents of autistic children have to face–what happens as their child gets older, hormones kick in and they phase out of the system. Currently in New York, five bills are pending in the State Legislature dealing with the long-term care of autistic adults[1].

Even advocates admit that additional services may be hard to mandate during a severe economic downturn. “While adults aging with autism are an issue, our focus is with kids because our kids are where we would be able to help with early intervention,” says Cindy McDonough, from the office of the counsel at the New York Office of Mental Retardation and Developmental Disabilities. “Between us and California, we’re all going down the tubes right now, fiscally, it’s very hard to propose anything new specifically in autism.”

Autism is a term used to describe a broad set of complex brain disorders, grouped within the Autism Spectrum Disorders (ASD). It’s distinguished through three main areas of behaviors; social interactions with others, communication and reiteration, and insistence on sameness. The advocacy group Autism Speaks estimates that Autism is more common than childhood diabetes, adolescent cancer and pediatric AIDS combined. Though research in the medical field has hit many milestones, there is still no cure for autism, but coping and progressing can be the most difficult part for families.

 

Fast Cars, Fast Women

In the Mancino’s chilly 50-degree home, John sits in a t-shirt and basketball shorts. “We keep our jackets on because John can’t stand the heat,” his mom says. Undaunted, his blue eyes scan through the newspaper in search of one of his favorite things, fast cars. His love of cars can only be surpassed by his other favorite, women. A mischievous smile forms on his face when he sees an attractive woman and he sometimes lets loose with inappropriate comments out about her figure. “Now, now John, be a good boy,” Mancino says. He shies away. “Acceptable” social interaction, especially around women, can be hard for him.

Throughout their two-story home, there’s evidence of property damage. The holes in the wall, some are patched up and others left as is, are all results of John’s unpredictable episodes.  Mancino attributes it to a variety of things: extreme fatigue, frustration, over stimulation or sensory dysfunction. Although John is aware that he’s done something wrong and is very apologetic after, Mancino is getting older and the outbursts aren’t going to get any easier. As she points to the holes where John has left his mark, he is visibly upset. “It’s okay, everyone makes mistakes,” Mancino says, consolingly.   When the police are called to the home, like they were in January, it’s not a criminal response. It’s in a therapeutic capacity – their ability to represent authority, their physical size get John’s attention.

They had shower curtains, but John couldn’t tolerate them and he took them down, along with the shades and the window curtains. He’s slammed his bedroom door so frequently that it’s coming off the hinges. There are no sheets on John’s bed besides the comforter because he can’t tolerate it touching him. “He gets up every day in an environment where it’s very hard to sit, very hard to wait, where it’s very hard to share, where it’s very hard to be patient, where it’s very hard to eat slow, where it’s very hard to be polite and he’s got that on his plate every single day. From the minute he gets up, he has challenges all around him,” Mancino acknowledges.

“If I had a chance to give him back,” she says pausing for a moment, “I probably would.” However candid she may be, Mancino doesn’t dismiss John’s effect on her life.  “He’s changed my life in ways that I would have never, ever imagined… really he has been a gift. [But] hands down, if I was sitting at a table and I could get a healthy child instead of him, I’d want that healthy child. I think they’re out of their mind if they said, ‘this is what I want.’ Nobody wants this.”

At first glance, 5-foot, 6-inch John seems like an average teen. He has pictures of Sports Illustrated models along the walls of his room; he loves his mom’s grilled cheese and is a movie enthusiast. (He knows the lines of the movie “Liar Liar” verbatim). But, his needs exceed that of an “average teen.”

She didn’t need piano lessons, football uniforms or books for college for John. “What I needed was occupational therapy, speech therapy…most of which weren’t provided by insurance,” Mancino says. “They weren’t medical ‘necessities’,” she adds.

The years that would take a toll on most people physically haven’t shown on Mancino at all. Her green eyes, brightened under coats of black mascara, wink a lot at the whimsical things John says. She shares stories from John’s childhood; she smiles pleasantly without smudging her pink lipstick.

“I tried cigarettes one time,” John says, in a matter-of-fact tone. His mom adds with a raised eyebrow, “He thought it would ‘distress him,’ but it didn’t work…because cigarettes don’t help you feel better right, John?” John doesn’t pay any mind. He doesn’t like loud sounds that will startle him, thunder, dogs barking, babies crying or alarms. How does he wake up without an alarm, then? “God wakes him up,” Mancino says.

Medical and nonmedical costs can be as anywhere from $67,000 to$72,000 a year for someone on even the lower end of the spectrum, according to a study from the Harvard School of Public Health.

              The school district currently pays for all of Johns’ education and bussing. Mancino estimates it cost the school, Devereux, from $50,000 to $100,000 because it’s a one–on-one-ratio class. Mancino pays $2,000 a month for childcare and other support.

“If  he says something that’s inappropriate, it’s definitely scripted from a movie,” says Neil Boyle, the director of Vocational and Transitional Services at John’s school. “He always refers to things as macho. He’s a guy’s guy,” Boyle says.  “Somewhere in his life, someone told him he can run really fast, he can play pro-baseball—that he’s going to grow up and be 3,000 years old or seven feet tall, we’re letting him know you’re done growing, you’re not going to be 3,000 years old. He has a tough time with reality sometimes.”

When asked if his mother was his best friend, John shifts his eyes to the wall, smiles and says, “Somewhere in the middle…actually…she’s actually…actually…like a stranger.” He stops talking for a moment and proceeds to talk about other topics like biking and swimming. “What about Stephen?” Mancino asks, seemingly unaffected by John’s comments, armor intact. Stephen Shallo has been John’s paid caregiver and “big brother” for 10 years.

“Hey C-dog, what’s up!?” he says, greeting John playfully. Shallo, 24, keeps busy working at the district attorney’s office in Manhattan, but he always makes time for John. Shallo is tall and lean. His brown hair is neatly parted, his glasses neatly framing his eyes. They hang out every Saturday, eating Chinese food, going to the gym, and watching TV.  Mancino says Shallo won a state care-giver of the year award, and next to John’s grandfather, Shallo has been the most positive male figure John’s had in his life.
The ride hasn’t always been smooth, though. Shallo recalls witnessing John’s first meltdown when he was 15 and John, 10 and very tired.

“He quickly became irritable and frustrated, things quickly got out of control,” Shallo says. “He became aggressive and, although he didn’t attack me, he went into his mother’s room and started to destroy things… he focused on a lamp on his mother’s nightstand. He grabbed it and hurled it towards the window…it crashed to the floor, spreading glass shards throughout the room, but the bulb was still lit. Sensing my frustration and fear, John tried to push me to my limits by jumping on the glass and lamp. I acted quickly and reached for the plug making sure that bulb was dead. He eventually calmed down and I cleaned up the mess. I went home that night much wiser, much more prepared for the next meltdown.”

Shallo speaks highly of Mancino, “She is the mother every child wishes they had. Everything and I mean everything she does is for John. Shallo adds, “If the public understood autism better, understood how people struggle to live with it, perhaps things would be easier for John. The education would improve programs and services for individuals like John and hopefully increase the number of volunteers willing to mentor people with autism.”

John has big dreams of being a comedian or actor, or both, he says. For now, he works unpaid at the local Red Cross assisting in janitorial services. On other days, he shreds paper at the Honda dealership. But, what he seems to enjoy most is helping others. He mentors an 8-year-old student, Sheila, at school.  John recalls when the young student fell in school, “I was worried. I was very upset. I’m like her big brother.”

While her son may be drawn to other people, Mancino has found having an autistic son isolating. When asked about her friends, Mancino replies, “I [basically] don’t have any….it all slipped away.” She goes on to explain that relationships are too hard to maintain. “You can’t go to other kids birthday parties when your kid’s bopping kids on the head. It’s rude and it becomes socially embarrassing. You don’t fit in.”

Mancino added, “The elderly are not valued, the disabled are not valued and people that have challenges.  They can’t lead what people would say as ‘meaningful lives.’ Who’s to determine what’s meaningful?” 

As for John’s future and if something should ever happen to Mancino, she’s set up a supplemental trust fund with assets instead of leaving a beneficiary. The trust, she says, is just extra money because the school is training him to transition into vocational services.  The government offers full paid housing (if available), food stamps and a small stipend. “I don’t know where it’s going to end up. It would have been easier to have a child with cancer. At least it would have been over. But, for a mother to have to worry for the rest of her life about who is going to take care of their vulnerable child…”

 

*names have been  changed

 

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About this story

I interviewed John and Christine Mancino at their home in January and witnessed the damage to their home.  Certain events, like the police being called, were all reconstructed. Although John didn’t realize he was being interviewed for an article, he spoke with the permission of his mother.

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