An Autistic Student's Journey To College
Roger Diehl, photographed at his grandmother's house in Madison, Wis. - Roger Diehl, photographed at his grandmother's house in Madison, Wis., on Sept. 1. Diehl, now a freshman at the University of Wisconsin, has battled mental illness and developmental disorders throughout his life. (Jerome De Perlinghi for NPR)
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.
(Jerome De Perlinghi for NPR)
"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.
(Jerome De Perlinghi for NPR)
"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.
(Jerome De Perlinghi for NPR)
"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.
(Jerome De Perlinghi for NPR)
"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.
(Jerome De Perlinghi for NPR)
"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.
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Roger Diehl, a college freshman with Asperger's and depression, and his mother, Sita Diehl, answer questions about what parents and education specialists can do to help kids with learning disabilities or mental illness make a strong transition to college.
RENEE MONTAGNE, host:
This is MORNING EDITION from NPR News. Good morning. I'm Renee Montagne.
STEVE INSKEEP, host:
And I'm Steve Inskeep. Today in Your Health we'll report on young adults who go off to college this month with mental illnesses. Going to college is a particularly challenging turning point. Reporter Michelle Trudeau tells us how one family prepared for their son's departure.
MICHELLE TRUDEAU: Two weeks ago, Roger Diehl left his home in Nashville, Tennessee and entered the freshman class at the University of Wisconsin at Madison. He's registered for courses in chemistry, multi-variable calculus and history. And tomorrow Roger will register at another office - at the university's disability resource center. Here's what he plans to say to them.
Mr. ROGER DIEHL (Student): I have some conditions, and, well, I don't need any help right now. I just want them to know that I do have some conditions and get myself registered with them, so if something comes up, then I can get help quicker.
TRUDEAU: Roger wants people to know upfront about his conditions.
Mr. DIEHL: I'll tell them that I have been diagnosed with Asperger's.
TRUDEAU: This is a form of autism, characterized by difficulties in social interactions.
Mr. DIEHL: ADHD and clinical depression.
TRUDEAU: And particularly with clinical depression, being away on his own at college could be risky for Roger. His mother, Sita Diehl, recalls realizing early on how truly life-threatening depression could be for her son.
Ms. SITA DIEHL (Mother): My first impression of his depression was when he was three. And I was worried about him because he was beginning to say that he wanted to kill himself. And...
Mr. DIEHL: I wasn't actually thinking about ways to commit suicide. I was just thinking of the desirability of doing so. I remember that.
Ms. DIEHL: Yeah. And then when he was six or seven he would ask me about methods to commit suicide. Like he'd say if I put this plastic bag over my head, how long would it take to suffocate? Or if I open this car door and fall into traffic, am I sure to be killed?
TRUDEAU: It was at that point that the Diehls started to get psychiatric help for their son. As a 7-year-old, Roger was put on the anti-depressant Prozac, and then Ritalin for his ADHD. And although Roger's had several more depressive episodes, he nevertheless graduated from high school with straight A's. He applied to colleges and was accepted at several. He was a finalist for a national merit scholarship and has received two academic scholarships at Wisconsin.
Roger's smart, works hard, but he faces difficult challenges ahead. Freshman year in college is a very risky time for many teenagers, but it is a particularly high-risk moment for Roger because of his struggles with depression and other mental health problems. Roger's mother has planned for this. Sita runs Tennessee's National Alliance on Mental Illness. And in counseling families she's come to recognize that preparations must be made for Roger's transition from home to college.
Ms. DIEHL: 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. And so I was determined that we were going to learn from experience. And 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.
TRUDEAU: Building that transitional bridge for a child with serious mental health problems requires many steps, Sita Diehl says, beginning with the choice of college. One reason the Diehls chose the University of Wisconsin is because of the social support network in Madison.
Ms. DIEHL: That's where our extended family lives. For the first year, he's going to be living with his grandmother, just to - you know, make that transition gently. And his favorite cousin lives there. And so he'll have a ready-made social system.
TRUDEAU: There's also the legal transition. Roger turned 18 in May, so he's now a legal adult. His parents no longer have the legal right to be involved in his medical care, even though he's at risk for depression and suicide. The family's prepared for this, too, in advance by finding a psychiatrist for Roger in Madison. He's already met with her.
Mr. DIEHL: She's the person who I'll check in with every month just as a check-up appointment to make sure that everything's going all right.
TRUDEAU: Numerous other preparations have been made in advance.
Ms. DIEHL: We went to an attorney who is Roger's attorney, not our attorney. And she determined that he - under the circumstances that he needed a financial power of attorney.
TRUDEAU: Roger has given power of attorney to his grandmother.
Ms. DIEHL: Then a mental health care power of attorney and a health care power of attorney, a living will, and then a HIPAA release.
TRUDEAU: 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 agrees to let his parents remain involved in his medical care, much as when he was a dependent. For parents of adult children with mental illnesses, a HIPAA release is critical, Sita says.
Ms. DIEHL: I've heard so many parents say 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.
TRUDEAU: With the HIPAA law in place, medical staff is protective of patient's privacy.
Ms. DIEHL: They're very, very reluctant to give information. And you do have to wave this paper in front of them and say, This has been signed by the patient when he was making good decisions.
TRUDEAU: Roger is also writing an Advanced Directive, documenting the kind of medical intervention he wants if he becomes incapacitated. And with chronic, severe depression, becoming incapable of making good medical decisions is a real concern.
Ms. DIEHL: 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.
TRUDEAU: How do you feel, Roger, about all these legal preparations?
Mr. DIEHL: It feels very good. 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. I'd rather have them know and be able to make decisions than, well, the doctors making the decisions by themselves.
TRUDEAU: Do you feel like your independence is being curtailed by your parents?
Mr. DIEHL: 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.
TRUDEAU: As classes get underway, Roger plans to talk directly to his teachers to prepare them for his mental illness behavioral issues.
Mr. DIEHL: I think they need to know what not to be concerned about.
TRUDEAU: Like he often gets restless in class and needs to get up and pace.
Mr. DIEHL: And also I often will like snap, or there are a number of hand behaviors that I'll do.
TRUDEAU: Such as rapidly flapping his hands.
Mr. DIEHL: So it's better if the teacher knows that it's nothing to worry about.
TRUDEAU: And Roger's also joined a campus club for canoeing and kayaking, his strategy to meet people in a relaxed way.
Mr. DIEHL: I'm not as social as most people. I - well, I don't make friends as quickly.
TRUDEAU: Roger plans to major in biochemistry. He loves science and math. He says he's very excited about the rigorous academic load ahead of him and the sheer wonder of learning new things.
Mr. DIEHL: I plan to find out what I like in science and get involved with it. It's a pretty general goal, but I just came here so I really only half know what this place is and what it can offer.
TRUDEAU: A remarkable young man, with a family supporting him, having prepared him to go off to college and thrive, while living with the challenges of his mental illness.
For NPR News, I'm Michelle Trudeau.
INSKEEP: And that's Your Health for this Thursday morning. You hear it every Thursday morning on MORNING EDITION. There are pictures of Roger at the University of Wisconsin at npr.org. And Roger and his mom will take listener questions this week. Transcript provided by NPR, Copyright National Public Radio.
