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Neurology Now:
doi: 10.1097/01.NNN.0000394648.91741.4d
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You, Me, and ADHD: After their four children were diagnosed with attention deficit hyperactivity disorder—and one with Asperger's syndrome—Curt and Shonda Schilling learned to appreciate their “neurodiverse” family

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During his playing days, retired Boston Red Sox pitcher Curt Schilling established a reputation for always being on top of his game. But four years ago, life threw a curve ball to him and his wife, Shonda Schilling. They learned their four children had ADHD, and their middle son was also diagnosed with Asperger's syndrome. Last year, Shonda decided to chronicle her family's story in her book, The Best Kind of Different: Our Family's Journey with Asperger's Syndrome (William Morrow, 2010; thebestkindofdifferent.com).

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“Attention deficit hyperactivity disorder, or ADHD, is a common neurobehavioral disorder. It is characterized by inattentiveness, over-activity, impulsivity, or a combination of these factors,” explains Michael Goldstein, M.D., a pediatric neurologist with Western Neurological Associates in Salt Lake City, UT, and the former vice president of the American Academy of Neurology (AAN). A neurobehavioral disorder is a neurologic disorder that causes behavioral problems. “Some accounts suggest that 3 percent to 7 percent of the population fulfills the criteria for ADHD,” Dr. Goldstein says.

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BEING A BOY, OR SOMETHING ELSE?

In 2007, Shonda began noticing that her oldest son, Gehrig, was struggling in middle school. Although he was a bright child, getting him to do his homework had become a constant struggle.

“Gehrig had fallen into a cycle where he was slipping behind in his school work and then struggling to catch up,” Shonda recalls. “I would exhaust myself trying to get him to finish his homework every night.”

When report cards came out, Gehrig's grades reflected his inability to complete assignments. He had done well in school for years, but his grades were now below average.

“Curt and I were angry because we thought Gehrig wasn't putting enough effort into his schoolwork,” Shonda says. “We punished him for his grades by taking away privileges and items that were important to him.”

At the time, Curt was on the road traveling nine months out of the year with the Red Sox. Shonda, who admits she often felt like a single mom, was growing weary of the nightly battles to get Gehrig to do his homework.

“As soon as I left the room, Gehrig would wander into another room to do anything other than homework,” Shonda says. “One evening, as I was feeling very frustrated, I came across an online checklist of ADHD symptoms and realized that Gehrig fit every symptom on the list.”

Shonda brought her concerns to Curt and was surprised to be met with resistance. Although Curt had been diagnosed with ADHD many years before and took medication for it, he refused to acknowledge the parallels between himself and Gehrig. He told his wife that Gehrig was probably just “being a boy” and needed more structure.

“Curt and I felt that ADHD was too frequently diagnosed in kids,” Shonda recalls.

It's not uncommon for parents to question a child's diagnosis of ADHD, says Max Wiznitzer, M.D., a pediatric neurologist and associate professor of pediatric neurology at Case Western Reserve University's School of Medicine in Cleveland, OH.

“Unfortunately, there's a lot of public misunderstanding about ADHD. Some people believe it isn't a real disorder and is actually the result of bad parenting or laziness on the child's part,” Dr. Wiznitzer says. “This isn't the case. Parents should not feel guilty or let others make them feel guilty about their parenting—ADHD is a very real and treatable disorder.”

In fact, ADHD has a genetic component, Dr. Wiznitzer says, citing research that shows ADHD is more common in children who have close relatives with the disorder.

A recent genetic study by researchers at Cardiff University in the United Kingdom, published in the September 2010 issue of the medical journal The Lancet, found that children with ADHD have more “copy-number variants” in their chromosomes than children without the condition. Copy-number variants are pieces of DNA that are either missing or extraneous. However, the researchers also stressed that there is no single gene behind ADHD.

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TO MEDICATE OR NOT TO MEDICATE…

Discovering that a preteen, such as the Schillings' son, has ADHD isn't uncommon, says Dr. Wiznitzer. Up to 66 percent of children with ADHD continue to exhibit symptoms into adolescence. These symptoms are not always recognized as a behavioral disorder because almost everyone—preteens in particular—can be restless, impulsive, and inattentive at times.

Symptoms of ADHD can include procrastination, disorganized work habits, impatience, poor impulse control, poor judgment, and frequent interrupting. (For a full list of symptoms, visit the Web site of Children and Adults with Attention-Deficit/Hyperactivity Disorder at chadd.org.)

“The key to determining whether your child might have ADHD or not is the frequency of the behaviors and whether they are developmentally inappropriate,” Dr. Wiznitzer says. “If a child's behavior has been evident for at least six months and interferes with his or her ability to function at school or at home, parents should consult with their child's pediatrician or pediatric neurologist. The doctor will then look at the child's history and exclude factors such as lack of sleep, certain medications, or attention-seeking behavior that could be causing the problems.”

After determining that Gehrig seemed to have all the symptoms of ADHD, Shonda made an appointment to have him evaluated by a pediatric neurologist. She wasn't surprised when her son was diagnosed with ADHD and prescribed one of the approved stimulant medications for the condition.

But like many parents, the Schillings struggled with whether or not to give their child medication to manage his condition.

“I grew up avoiding medication except when it was desperately needed,” Shonda says, “yet all of my attempts at getting Gehrig to focus weren't working. I wanted to help him become the student I knew he could be.”

While acknowledging that giving children prescription drugs can be worrisome for parents, Dr. Goldstein notes that stimulant medications based on methylphenidate dextroamphetamine have been shown in many studies to be highly effective at helping children and adults control impulsive, inattentive, and hyperactive behavior.

“These medications have been used by millions of children for more than 70 years and have proven to be almost completely free of long-term side effects,” Dr. Goldstein says.

According to the Mayo Clinic, some of the most common side effects of stimulant medication in children can include decreased appetite, weight loss, problems sleeping, and irritability as the effects of the medication taper off.

Whether or not ADHD medications are being overprescribed continues to be a controversial topic among parents and healthcare practitioners. A study published in 2009 in the Journal of Marital and Family Therapy notes that the diagnosis of ADHD has climbed dramatically in the last decade and estimates that up to eight million American children are now taking one or more psychotropic drugs.

The Schillings decided to try managing Gehrig's ADHD without drugs. “Gehrig balked at the thought of taking medicine on a daily basis for his ADHD,” Shonda says. “He said he didn't like the way the pills tasted or made him feel.”

Some physicians recommend that parents exhaust non-medication options before filling a prescription for their child, yet Dr. Wiznitzer cautions these options may only be appropriate for those with mild to moderate ADHD.

“Non-medication therapies often include adjusting the demands placed on children, sometimes called environmental management,” Dr. Goldstein says. “It means changing the expectations of parents and teachers to more closely conform to the child's abilities—for example, giving simple directions and supervising the child's responses.”

Parents can also help by reminding the child with ADHD to follow through with handing in homework and cleaning his room, having the child meet with a psychologist, teaching him how to keep a consistent schedule, and getting accommodations in school.

A survey published in July 2010 by Consumer Reports found that medication coupled with therapy had the most positive outcome for people with ADHD. Consumer Reports surveyed more than 900 parents whose children have the disorder. Of those surveyed, 84 percent tried medication, and two-thirds of that group had positive results. But the survey also found that children who were treated with both drug and non-drug therapies had better results than those who only used medication.

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ADHD AND ASPERGER'S

While the Schillings began working to manage Gehrig's ADHD with non-medication therapies, they received a call from school administrators telling them that their other three children—Gabby, Garrison, and Grant—were also having trouble focusing in class.

A pediatric neurologist diagnosed the children with ADHD and then, after further testing, also diagnosed Grant with Asperger's syndrome, a form of autism characterized by significant difficulties in social interaction along with restricted and repetitive patterns of behavior and interests. Asperger's syndrome differs from other forms of autism in that a child with Asperger's typically has normal language and intellectual development. Also, people with Asperger's usually make more of an effort than those with other forms of autism to make friends and engage in activities with others.

“For years Grant had been difficult and disruptive, but the word ‘autism’ wasn't in our vocabulary,” Shonda says. “Although Grant's diagnosis was a huge relief when it came to managing his behavior, it tore me up internally. I was down on myself for all that was happening with our kids and their many diagnoses.”

Curt, who was traveling with the Red Sox at the time, also carried a burden of guilt. He admits he never fully understood the daily challenges faced by Shonda until he retired from baseball in 2009. The two began couples counseling at the time, which strengthened their 19-year marriage. Today they work together as a team to parent their four children, who range in age from 8 to 15.

The National Institutes of Health (NIH) say that while the incidence of Asperger's syndrome is not well established, experts in population studies conservatively estimate that two out of every 10,000 children have the disorder. Boys are three to four times more likely than girls to have it. However, like other types of autism—collectively known as autism spectrum disorders—Asperger's can be difficult to diagnose.

The genetic study in The Lancet suggests a shared biological basis between ADHD and autism. “The missing or duplicated chunks of DNA are in the areas of the chromosome that overlap with those implicated in autism and schizophrenia, [which are] established brain disorders,” says study researcher Anita Thapar, M.D., professor of child and adolescent psychiatry at Cardiff University in Wales. “And we found that the most significant excess of these copy number variants was in a specific region … that includes genes for brain development.”

Once a child is diagnosed with Asperger's, interventions and treatments can improve functioning and reduce undesirable behaviors, Dr. Wiznitzer says. “The treatment may include a combination of education, behavior modification, and different medications to treat associated conditions such as anxiety, depression, hyperactivity, and obsessive-compulsive behavior,” he says.

All of the Schillings' three younger children take medication for their ADHD. Their parents say it has given them the ability to focus.

“I try to be more patient with the kids and yell less,” Curt says. “I realize that Grant isn't doing much of what he does to be a bad kid. He's doing what he's doing because he doesn't understand any other way.”

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THE BEST KIND OF DIFFERENT

Knowing how his own career in baseball helped him to focus as well as calm him, Curt has encouraged his childrens' interest in sports. He also supported Shonda's decision to write her book.

“We wanted other parents to know that if their child is diagnosed with Asperger's syndrome or ADHD, the diagnosis is a blessing, not a curse,” Curt says. “So many questions about your child—and you as a parent—get answered in that diagnosis. Now you are armed with the knowledge you need to help them and yourself.”

Shonda hopes that her honesty about her family's journey will help other families who are struggling with a child's diagnosis of a neurologic condition such as ADHD or Asperger's. As she travels the country talking to families, she encourages them to “take a deep breath—it's going to be okay.”

The Schillings say their children have given them a new perspective on parenting. “I have stopped comparing my kids to others in the way society pressures us to do,” Shonda says. “I now celebrate my children's differences and the qualities that make them unique and special.”

Shonda has found that it helps for parents, teachers, and others to understand that ADHD and Asperger's are neurologic disorders, due to the way a child's brain is wired.

“Once you understand that, then you can see how much these children have to offer you and how bright they are,” she says. “A lot of people are so afraid of the label that they don't want to admit their kids have Asperger's or ADHD. But once you realize what you have, you enter a different world. You get to see their full potential.”

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What's New in ADHD Medications

There is a much larger choice among stimulants for treating ADHD than before, including methylphenidate, dexmethylphenidate, dextroamphetamine, and the combination of dextroamphetamine and amphetamine. Many of the medications come in forms that only need to be given once a day and can last for up to 12 hours.

Several non-stimulant options are now available as well. For example, in 2005 the FDA approved atomoxetine, a non-stimulant drug to treat ADHD in adults and children over age 6. Guanfacine, another non-stimulant, was approved by the FDA in 2009 for use in children 6 to 17 years old with ADHD.

Some antidepressants, such as bupropion, have also been used to effectively treat ADHD.

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©2011 American Academy of Neurology

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