Thursday, January 15, 2009

Coping With An Autistic Brother: A Teenager's Take

Each year, approximately one child in every 150 is diagnosed with autism. Eleven-year-old Andrew Skillings is one of those children. He has Asperger's syndrome, a mild form of autism.

For Andrew's older sister Marissa, her brother's diagnosis has affected every aspect of her life from the time he was born. She was almost 5 and shared a room with Andrew. Marissa says she remembers those first few weeks he was home.

"I decided he needed to go back where he came from, because as a baby he never, ever stopped screaming," she says.

Then the Skillings found out Andrew had a mental disability.

Recently, Marissa described what it's like to live with a little brother who has frequent meltdowns — and who she tries to protect.

"I'd kill for him. But I could kill him, too. He talks. Nonstop. Talking and talking," Marissa says. "He'll tell anybody information about an animal, whether they want to hear it or not. People can tell Andrew has a disability because of his hand gestures and the way he moves when he gets nervous.

"He moves his hands back and forth; and he'll walk with his hands down by his sides just shaking his hands; and he likes to crack his knuckles when he's nervous, and he'll keep doing the movement even if they don't crack."

As Marissa says, their sibling relationship is different from "two normal siblings" because of his autism.

"Because socially he needs help, so I have to protect him and be there for him more than a normal big sister would," she says. "He freaks out, like if I won't get out of the bathroom and I tell him to shut up, he'll grab a kitchen knife and come over to the door and open the door and chase me around the house with a knife. I know he'd never touch me with it, but when he's running with a knife pointed towards me and I'm running, if he tripped, then something bad could happen."

Marissa says she stays out with her friends until her curfew so she can avoid dealing with her brother's disability.

"I started staying away from home around 5 or 6," she says. "I'd stay outside or at a friend's as late as I could until my mom called me home. I can sit down and talk with my parents, but a lot of times, it's like Andrew's always trying to explain something about a cheetah or a jaguar or something in the jungle that has no importance on anyone's life. But if I interrupt him, he gets mad and then it turns into a tantrum and my mom gets mad, and I'm just like, 'I don't even want to talk to you guys anymore.' "

Marissa says she has seen kids tease Andrew, and it's not unusual at his age. One day, she says, a boy was throwing rocks at Andrew. Andrew tried to shield himself with cardboard, but a rock flew over the cardboard and hit him in the head. Andrew ran into the house crying, and when Marissa found out what happened, she chased the boy down the street and cornered him.

"I smacked him across the face and he was cornered, and my face I'm sure was beet-red, and I was like, 'Just do it again and I'll punch you right in your mouth,' " Marissa says. "I was mad because no one can beat up my brother except me."

"Sometimes, if I get really frustrated, I just wish I could change everything: Sell him to the zoo and buy new parents," Marissa says. "But then the times when I'm actually appreciating things and I'm not in the moment when I'm steaming mad, I do appreciate what I have."

"I don't think I'd change anything, 'cause this is my life and this is what I'm used to. Andrew wouldn't be like the Andrew I know and love if he was different, because autism is his whole personality."

An Autistic Student's Journey To College

Sending your child off to college can be an anxious time for many parents. But for parents of children with a mental illness or learning disability, the transition is especially challenging. One worry is that parents of adult children have no legal standing in their medical care. In Nashville, Tenn., the Diehl family has worked hard to prepare their son for the move from home to college.

Roger's Story

Roger Diehl turned 18 in May. He is a freshman at the University of Wisconsin-Madison. Throughout high school, Roger was an A-student, despite having serious mental health challenges throughout his childhood. He has suffered from clinical depression. He has attention-deficit hyperactivity disorder (ADHD) and Asperger's, a form of autism.

"I'm autistic, so it's a bit tough for me to interact socially," he says.

"Looking people in the eye is not natural to me. I had to learn it. And I also, especially earlier in my childhood, had some pretty bad depressive episodes."

Roger's mother, Sita Diehl, says she first began seeing signs of her son's depression when he was 3.

"I was worried about him, because he was beginning to say that he wanted to kill himself," she says. "He would get very, very angry and frustrated and he would say 'I don't want to be here anymore.'"

Roger says he wasn't actually thinking about ways to commit suicide; he was just thinking it would be a good thing to do. Then, when he turned 6 or 7, his mother remembers him asking specifically about methods of suicide: How long it would take to suffocate if he put a plastic bag over his head; Or, if he jumped out of the car into traffic, would he be killed for sure?

It was at that point that the Diehls got psychiatric help for their son. As a 7-year-old, Roger was put on the anti-depressant Prozac, and he's been on the medication ever since.

"I'm currently on 10mg of Prozac a day and 40 of Ritalin in high-stress situations, because I also have ADHD," Roger says.

Off To College

Roger did not try to hide his mental health problems when he applied for college. He wrote about his illness in his Merit Scholarship application.

"One of the greatest challenges I've overcome has been my autism," he wrote.

His teachers also mentioned his autism in their letters of recommendation. His applications were successful. He was a finalist for a National Merit Scholarship, and he was accepted at several colleges.

When he chose the University of Wisconsin, his family knew that he would need support to attend a college away from home. Sita Diehl is the executive director of Tennessee's National Alliance for Mental Illness, in Nashville. Her work with families there prepared her for Roger's move.

"For many years, I've heard families talk about how their child was at the top of his class, and he was just wonderful, and then he went off to college, and everything fell apart," she says. "And so I was determined that we were going to learn from experience."

"Whether or not it was something that Roger needed, we were going to build a bridge for a gradual launch, rather than just pushing him out of the nest."

One of the reasons the Diehls chose the University of Wisconsin over other colleges was because of their social support network in Madison.

"That's where our extended family lives," Sita Diehl says.

"For the first year, Roger's going to be living with his grandmother, just to make that transition gently. And his favorite cousin lives there, and so he'll have a ready-made social system."

How Parents Can Help

All families face a legal transition when their child turns 18. Roger is now a legal adult. As a result, his parents no longer have the legal right to be involved in his medical care, even though they know he is at risk for depression and suicide.

The family has prepared for this, too.

Sita Diehl has already found a psychiatrist in Madison for Roger; Roger and his family have also consulted a lawyer. The lawyer recommended that Roger needed to give someone financial power of attorney over his affairs. Roger chose to give the power of attorney to his grandmother.

The lawyer also recommended that Roger appoint a power of attorney for both his mental health care and his health care, draft a living will and sign a HIPAA release.

A HIPAA release refers to the "Health Insurance Portability and Accountability Act," a federal law that protects the privacy of an adult's medical information.

By signing a HIPAA release, Roger agreed to let his parents remain involved in his medical care, as they had been when he was a dependent. For parents of adult children with mental illnesses, a HIPAA release is critical.

"I've heard so many parents say that at the age of 18, the wall comes down and it's a real shock. Suddenly, people we've been talking to for years can't talk to us anymore," Sita Diehl says.

"They're very, very reluctant to give information. And you do have to wave this paper in front of them and say, 'This was signed by the patient when he was making good decisions.'"

In addition, Roger is working on an Advanced Directive with his grandmother, documenting what kinds of medical interventions he wants if he becomes incapacitated. And for Roger, who suffers with chronic, severe depression, becoming incapable of making good medical decisions is a real concern.

"He'll work out what he wants, and where he wants to go, and how he wants to be treated, and what medications, and that kind of thing, if he becomes incapacitated. I really don't think Roger will get into that state, but if he did, it would at least be there as a safety net," Sita Diehl says.

Roger feels good about these legal decisions.

"It feels a lot better than not having my family know about what sorts of treatment I'm getting if I'm determined to not have capacity," Roger says.

"I'd rather have them know and be able to make decisions, than the doctors making decisions by themselves."

And Roger says he doesn't feel that his independence is being curtailed by his parents.

"I actually feel that it's adding to my independence, because I feel they'll be more responsive to my wishes than someone I don't know."

Using College Resources

Sita Diehl also recommends one more important step, and that's to check in with the university's Office of Disability.

"Go into the office and say. 'I'm here. This is my disability. I don't need you right now. But at least you know I'm here.'"

"I think the important thing is not to just hope it'll all work out," she says. "But to look at the potential challenges and take steps as far as you can, and do that planning together. And set them up for success as much as possible," Sita Diehl says. Her son agreed.

Roger plans to major in biochemistry. He says he's very excited about the rigorous academic load ahead of him and the sheer wonder of learning new things. He is a remarkable young man, with a family supporting him, and preparing him to go off to college and thrive, while living with the challenges of mental disabilities.

School Helps Autistic Kids Navigate 'Foreign Land'

When Gibson Brown learned how to put on his socks, his mother was ecstatic. Watching her autistic son develop, she says, is a lot like "watching grass grow." Such a step was almost like an entire tree had shot from the earth.

Until, that is, she went over to her sister's house and watched, stunned, as her niece — younger than her own son — put on her socks, shoes and jacket in a snap.

"I think, 'Oh my gosh,'" Katrina Brown says, recalling her shattered enthusiasm.

For the parents of an autistic child, such comparisons can be dangerous. No one knows this better than the teachers at the Croyden Avenue School in Kalamazoo, Mich. Each day is filled with tiny steps and tons of repetition. Progress comes on many scales.

Croyden is also a rather unusual place in that it's a public school that offers one-on-one intensive counseling for autistic children. Done privately, such therapy could cost families up to $100,000 a year.

On a recent morning, Katrina Brown is filled with many hopes and fears as she drops her son off at Croyden.

"He will do smart things," she says. "He figures things out on his own. It's not that I expect an Einstein or whatever. It just makes me really worried when I see how far he still has to go."

The school is prepared for children facing a unique set of hurdles. The classroom is filled with nearly soundproof cubicles to minimize visual and verbal distractions. Children are encouraged to play before starting on work to get to know their environment.

Many of the children aren't talking when they arrive at school. The earlier they learn to speak — rather than use behaviors to convey what they want — the better, says Angela Telfer, the principal of the school.

"If you can imagine going though life not understanding what people are saying to you and not being able to communicate how you are feeling, it can be a really scary place," she says. "It almost seems like you are dropped in a foreign land."

Teachers focus on small steps and try to develop lesson plans that take into consideration each child's strengths, weaknesses, likes and dislikes.

Gibson, for example, is drawn to the toy train, so his teacher frequently uses this as a tool.

Katrina Brown is learning to accept that progress is relative.

"I am learning to just appreciate him for who he is and the miracle he is ... he's really had to work so hard. So when you think about it that way, he is doing pretty good."

Autism Reveals Social Roots of Language

People with autism often struggle to learn language, and they also struggle with personal relationships.

Scientists say that's probably not a coincidence.

There's growing evidence that language depends as much on the brain circuits that help us navigate a cocktail party as those that conjugate verbs.

One of the people who believes that evidence is Temple Grandin. She teaches animal science at Colorado State University and has written several best-selling books. She's also autistic.

Grandin says it has taken her most of her life to reach the point where she can speak with other people in a way that sounds natural. She says that's because she's had to learn language without the social abilities most people have.

Grandin didn't begin speaking until she was 3 ½ years old. Her first words referred to things, not people, she says.

"I'd point at something that I wanted, you know like a piece of candy or whatever, and say, 'there,'" Grandin says.

She wasn't using language to reach out to her parents or to other children, the way most kids do, so she didn't have the same motivation to talk.

A Tool for Information, or Attention?

When Grandin finally did become interested in words, it was because they provided a way to get information, not attention.

"When I was in third grade, I had trouble with reading, so mother taught me how to read," she says. It opened up a world full of "so many interesting things," she recalls: "I used to like to get the World Book Encyclopedia and read it."

But the encyclopedia taught her little about using language to make friends. Even when she got to high school, chit-chat and gossip meant nothing to her.

She says that made her teenage years the worst part of her life. "Kids teased me, called me tape recorder because when I talked it was kind of like just using the same phrases."

She also kept talking, without letting other people respond.

Grandin and many others with autism have no problem with the mechanics of language, says Dr. V.S. Ramachandran, a neuroscientist at University of California, San Diego. But they don't understand what's really going on in many conversations.

"That's one of the hallmarks of autism," he says, "difficulty with social interaction, manifest both in spoken language and in just lack of empathy. The ability to understand other minds would be one way of describing it."

The Role of Mind Reading

Ramachandran says it's hard to use language if you don't have any idea what someone else is thinking and feeling.

That may seem obvious. But in the past, researchers have treated language as if it were primarily a system of rules. They assumed that people spoke because every human brain came pre-wired with a "universal grammar."

Now, a growing number of researchers, including Ramachandran, argue that the social and emotional aspects of language are at least as important as the rules for stringing words together.

Emotional Neurons

Ramachandran says one reason for the new thinking is a new understanding of the human brain. He says it's become clear that babies' brains are programmed to imitate.

"You stick your tongue out at a newborn baby, very often the newborn baby will stick its tongue out," he says.

Similarly, babies return smiles and often make sounds when someone speaks to them.

A few years ago, scientists found a biological explanation for this phenomenon: specialized brain cells called mirror neurons.

These neurons fire when you do things such as sticking your tongue out. They also fire when you watch someone else stick their tongue out.

And mirror neurons can reflect emotions as well as physical actions. Experiments show that some of the same cells that fire when we feel pain also fire when we see another person in pain.

But people with autism appear to have faulty mirror neurons. That may be why they have trouble putting themselves in someone else's shoes. And Ramachandran says without that ability, a lot of what you can accomplish with language disappears.

"You have to be aware of the effects that your words are having on the other person's mind," he says. Otherwise, how could we use words to manipulate other people?

Picking Up Non-Verbal Cues

Temple Grandin has learned to compensate for her difficulty.

Early in her career, she spoke to people on the phone instead of face to face. That way she didn't miss messages conveyed through eye contact or body language.

But even on the phone, people may not say what they mean. The phrase "I'm fine" sometimes means just the opposite.

So Grandin taught herself to listen very closely to a person's tone of voice.

"When I had a client that I thought might be angry with me, I'd call him up just so I could listen to his voice," she says. "If it had a certain little whine sound in it I'd go, 'Oh he's still angry with me.'"

Over time, Grandin has developed a catalogue of signals she uses to figure out what people are thinking. She checks to see if they are fidgeting during a lecture, or making eye contact during a conversation, or folding their arms during an argument -- emotional cues most of us register automatically.

"I always keep learning," Grandin says. "People ask for the single magic breakthrough. There isn't one. I keep learning every day how I think and feel is different. It's all through logic, trial and error, intellect."

Intellect can only take her so far, though. Grandin says she still has trouble with certain types of conversations.

"Just a couple of years ago I went out to dinner with some salesmen, and these people were absolutely totally social," she says. "They talked for three hours about sports-themed nothing. There was no informational content in what they were talking about. It was a lot of silly jokes about the color of medication and the color of different team mascots. It was boring for me."

Social Motivation for Language

The salesmen were using language as a way of bonding with one another -- not a way to share information. Scientists say this sort of behavior may explain how humans developed language in the first place.

Bonding is something most animals do. For example, apes bond by grooming each other. And one theory has it that early humans began to augment their grooming with affectionate gestures and sounds that eventually led to primitive language.

Ramachandran says there are some gaps in that hypothesis. Like how people got from grunts to grammar.

"The difficult part is to try to disentangle the notion that emotional empathy merely gives you motivation, a reason to talk to somebody, versus an absolutely critical role in the emergence of language," he says.

Ramachandran suspects it's the latter because empathy is what allows people to understand the intention behind an action or a phrase.

For example, he says, when we see someone reach for a peanut, empathy helps us decide if they intend to eat it, or throw it at us. And when we hear someone use a string of words, empathy tells us whether to take the words literally or figuratively.

Ramachandran says people who lack empathy also lack the ability to read another person's intentions -- whether physical or linguistic.

"Not only do they have problems understanding an action like reaching for a peanut," he says, "but also a metaphor like reaching for the stars."

Grandin doesn't use metaphors very often, even though she has mastered the mechanics of language. Grandin says she will never fully understand the social aspects of language, including other people's intentions. And that means language will never offer her more than a rough translation of what other people are trying to say.

Wednesday, January 14, 2009

Teen helps ‘parent' younger, autistic siblings

MINNEAPOLIS -- As a freshman in high school seeking volunteer hours, Abbey Davison applied to work one night a week with Lucy and Jacob Schneider, two Brooklyn Park, Minn., siblings with autism. She was prepared for tough questions, and tough questions she got: What did she know about autism? "Not much, but let's give it a try!" she said. What activities might she do with Lucy and Jacob, then 2 and 3? "Play outside when we could," she answered. "Color, work on social skills." Most important, why did Davison want to work with Lucy and Jacob? "I love kids!" she said.

She got the job. What she wasn't prepared for was the griller himself: Lucy and Jacob's older brother, Luke, then age 9.

"Luke had a questionnaire for me," Davison recalled with admiration. "He watches out for them, supports them, plays with them. They depend on him." Now 21 and studying occupational therapy at the College of St. Catherine, Davison remains close to the Schneider family, still going to the house weekly to help out. Her respect for Luke, who will be 15 in two weeks, has only grown. "It's different for a 14-year-old to be like that."

It's a new year so here's a new idea: a household without sibling rivalry. Luke Schneider simply doesn't have time for it.

Luke was 8 years old in 2002 when 2-year-old Jacob had tubes placed in his ears because he wasn't responding to the world around him. His parents, Mary and Steve, feared he was deaf. Instead, he was diagnosed with severe autism which was later changed to moderate. Mary recalls "so many people" encircling the family in their living room to explain the diagnosis. All she wanted to know was, "Will he ever say, 'I love you'? Will he graduate from high school?" Seven months later, 1-year-old Lucy also was diagnosed with autism. Luke remembers his parents telling him that "life was going to be different from now on," he said. "Their brains are a little different and they can't always understand what you're saying."

That helped Luke understand why his little brother didn't interact "normally" with him, running away, avoiding eye contact, not knowing that when someone says "Hi" to you, you say "Hi" back. But even early on there were victories. "I was so happy when he learned to play hide-and-seek with me," Luke said of Jacob. He learned how to help Lucy, too, finding her blanket, pouring her orange juice and making her peanut butter sandwiches. "They're like a couple of old people," Luke said. "You have to repeat yourself a lot."


Luke is a bit of an old soul himself. He is smart, polite, soft-spoken, a self-professed computer geek. He didn't care much for the "distractions" of a typical high school, which led him to enroll full time this year at Insight School of Minnesota, a fully accredited online high school administered by the Brooklyn Center School District. Luke attends school at the computer in his bedroom from about 9 a.m. to 4 p.m., pulling A's and B's in classes such as English Literature, Algebra One and World History.

His teachers describe him as responsible, disciplined and curious, a perfect candidate for online high school. Science teacher Angela Tingey advises the NASA club and said that Luke "knew the names of all the Mars rovers. He knew which one Phoenix was and that Phoenix had 'died,' or at least that they had lost contact. He knew everything about it. I said that he should be teaching the class."

The online option also allows him to help his parents when life doesn't go as planned, which happens more than occasionally.