This article originally appeared in the July-August 2000 issue of the Children's Advocate newsmagazine, published by Action Alliance for Children.
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Parent's experiences | What is AD/HD |
Biology or environment? | Tips for
teachers and caregivers | Know your rights |
Medication and your child: the controversy |
Getting a diagnosis | "I could not
have gotten through it without them": Parents whose children have AD/HD
help each other through a national support and advocacy organization |
How parent organizations help | Organizations
working on AD/HD
When Intisar Shareef adopted her son Daryl two years ago, he was eight years old, diagnosed with Attention Deficit/ Hyperactivity Disorder (AD/HD), and already taking Ritalin. "I didn't give Daryl any medication on weekends, and I saw a bright, engaged child," says Shareef. "The other five days of the week I saw a despondent, elusive person. So I decided that I wasn't going to succumb to what everybody was telling me."
Eventually, Daryl's Ritalin ran out and Shareef just never refilled it. Instead, she changed her parenting style to be firmer and clearer and began looking for a school that was consistent with the change. "It's better, sometimes, to be limited by another person than to be drugged," Shareef says. In the fall of 1999 Daryl began school at the all-male, all African American Malcolm X Academy. "I wanted Daryl to be in a situation where there was an external locus of control, so that he could begin to internalize that control," says Shareef. At the Malcolm X Academy, Shareef says, Daryl rarely gets into trouble and when he does, they handle it at school.
In April Daryl saw his doctor, who said he was doing so well there was no more reason for him to take medication.
Mary Colburn and her husband Bob adopted two sons who were eventually diagnosed with AD/HD. "He would want to get up and walk around the room a lot," says Colburn of her younger son, Kevin. "The teacher was spending a lot of time keeping him in his seat." Both children would get frustrated and throw temper tantrums when a task was difficult. At home, bedtime was an ordeal. Kevin got very hyperactive if he was over-tired. "He would almost get glassy-eyed," says Colburn. "It was really hard for him to control himself or to be controlled. He would be talking a mile a minute, or laughing hysterically, or yelling. And then I would be frazzled. It would be kind of an ugly scene at the end of the day sometimes."
Like Shareef, the Colburns had reservations about using medication. "We had all the fears that most parents have about not wanting to turn your kid into a zombie," says Colburn. The Colburns made an effort to go without medication, but finally decided that behavior modification alone wasn't working, so they decided to try Ritalin. "The change was immediate for both of them," Colburn says. "Very noticeable improvement. And the side effects were not that bad. It just seemed like it helped them to calm down enough to focus in class." There were social changes, too. Kevin told his parents, "I feel normal now. The other kids don't treat me like I'm weird anymore."
The controversy about AD/HD these days is pretty heated. Are our kids taking too many drugs? Are they being labeled, when the problem is really a larger cultural problem? But, on the other hand, what if kids are being punished for difficult behavior when they really need to be diagnosed and treated? "It's an emotional issue," says Mark Katz, a psychologist at San Diego's Learning Development Services. "I've seen instances where parents have been shamed and blamed mercilessly because they can't manage their own child. But no one could have managed this kid."
AD/HD is a syndrome," says AD/HD expert Stephen Hinshaw. "It's a collection of symptoms that often go together." There are three types of symptoms:
A child who has these symptoms doesn't necessarily have AD/HD. There are many reasons why a child might behave in these ways, such as frustration caused by a learning disorder, or physical problems like hearing loss or a seizure disorder. Children may have problem behavior if their school or home life is stressful or puts inappropriate demands on them. It's also important to consider the child's developmental level—it's normal for little kids to run around a lot!To make a diagnosis of AD/HD, the doctor must rule out other causes and determine that the behavio
It's also important to note that some kids have only part of the syndrome. They may have Attention Deficit Disorder (ADD) without hyperactivity, or hyperactivity without ADD.
It's tough to get a straight answer about what causes AD/HD.
AD/HD symptoms have a strong genetic basis, stonger than depression, stronger than schizophrenia, says AD/HD expert Stephen Hinshaw, professor of psychology at UC Berkeley. But Hinshaw also tells us, "The genes for AD/HD have been around for many millennia, but we didn't really start to notice them until we made kids go to school."
So what is it? What causes a kid to climb the walls at home, disrupt the class at school? The answer to this question is as complicated as the answer to any question about behavior, about personality, about who we are as human beings.
Most experts believe that AD/HD has a biological component, but they aren't sure exactly what it is. AD/HD tends to run in families, which suggests a genetic link. Children who have AD/HD usually have at least one close relative who also has AD/HD.
"Parenting doesn't cause AD/HD, but how parents handle a temperamentally very difficult kid may have a lot to do with the future," says Hinshaw. The way that parents and teachers respond to an impulsive kid can influence whether he goes on to delinquency and crime—a real risk for kids with AD/HD. Some researchers estimate that currently up to 70 percent of juvenile offenders and 40 percent of adult prisoners may have AD/HD.
In his book, Running on Ritalin, Lawrence Diller, a behavioral pediatrician, says some things about our society contribute to the recent dramatic increase in AD/HD diagnoses. Diller says our society is inconsistent—for example, encouraging individualism but demanding conformity. He also points to crowded classrooms, unclear parenting styles, and pressure for children to succeed.
"I think it's a mistake to say that AD/HD is a figment of the media's imagination," says Hinshaw. "But it's also a mistake to say that it's just this biological phenomenon that is impervious to culture. I think the answer is somewhere in the middle."
The structure of a classroom or playroom, its seating arrangements, and its rules, won't stop AD/HD, but may help children to feel more comfortable and be more successful
Under the IDEA, AD/HD and Attention Deficit Disorder (ADD) may qualify a child for special education services if the disorder limits attention to schoolwork so much that the child is doing poorly in school and needs special help.
Section 504 is a civil rights law that prohibits schools from discriminating against children with disabilities and says schools must provide "reasonable accommodations" for the child's disabilities, possibly including special services. Children are eligible for Section 504 if they have a physical or mental condition that "substantially limits a major life activity," such as learning. Children who are not eligible for special education may still be guaranteed similar services if they are eligible for Section 504.
"As a parent, it's one of the hardest decisions. It often goes against everything we feel is right. The thought that you have to give medication to a child to help him control his behavior and help him to focus. Most parents really agonize over the decision. Ultimately, each parent has to make that decision based on their child and their belief system." —Genie Hughes, parent
"Medication is a last resort. When they want to medicate immediately, that's a red flag." —Marguerite Wright, psychologist, Children's Hospital, Oakland
A recent study of children's medication published in the Journal of the American Medical Association found that the use of Ritalin (methylphenidate), the most common treatment for AD/HD, has increased substantially among children of all ages. This trend extends to preschoolers, among whom the use of drugs increased threefold between 1991 and 1995. Reseachers said this is particularly disturbing because the effects of these drugs on brain development are entirely unknown.
The effects of drugs like Ritalin on older children and adults are known. They can be addictive to teenagers and adults if misused, but experts say they are not addictive in children. If children are taking them, however, they have to taper off gradually. While on these medications, some children may lose weight, have less appetite, and temporarily grow more slowly. Others may have problems falling asleep.
Lawrence Diller, a behavioral pediatrician and author of the book,Running On Ritalin, looks critically at the recent rise in medicating children in the United States. He notes that children who have trouble sitting still and paying attention in school would have been handled differently a hundred years ago. Diller says we have rightly decided not to use corporal punishment, but worries that drugs may have taken its place in keeping kids in line in school. "We're no longer willing to intimidate children into compliance, but we might just be willing to drug them into it."
Recent results from a study by the National Institute of Mental Health suggest that carefully monitored medication is more effective than behavioral therapy for AD/HD when it's not accompanied by other issues—such as anxiety or learning disorders. The study compared children who received medication to children who didn't. Researchers found that the children who received medication were less distracted and "hyper", according to parent and teacher reports.
But the medication has to be carefully monitored to get the best results. Children in the study were carefully watched—daily for the first four weeks, then monthly for the next 13 months. They did better than children whose parents sought treatment outside the study—even though these children were often taking the same drugs as children in the study. Children who were not in the study saw a doctor only once every four to six months.
"The dangers of Ritalin and similar drugs have been vastly overstated in some of the media," says Russell A. Barkley, a leading researcher on AD/HD at the University of Massachusetts Medical School. "The scientific literature on the safety of Ritalin is abundant and uncontroversial to scientists working in this field."
Many kids with AD/HD also have problems such as anxiety, poor grades in school, or oppositional behavior. Learning and anxiety disorders are common among children with AD/HD, and some experts estimate that up to 75 percent experience depression. The treatment study found that when children with AD/HD also had difficulties in addition to inattention and hyperactivity, the most effective treatment was a combination of drugs and "intensive behavior therapy." That included group and individual therapy for parents to learn how to manage their kids better; therapist consultation with the child's teacher; an eight-week summer treatment program for the kids; and an in-class aide for each child to help the teacher manage the classroom better.
Children and Adults with Attention Deficit/Hyperactivity Disorder (CHADD), a national parent organization, strongly favors a combination of medication and other therapy. On the other hand, Dr. Marc Lerner of the American Academy of Pediatrics points out that, depending on the child, the full range of treatments may not be necessary. "Some children, often with milder symptoms, can be managed by behavioral treatments alone. Others may have a dramatic and nearly full improvement with medication."
You are a parent and you think your child might have AD/HD. To make a thorough diagnosis, your child's doctor should
"Parents have a right to a thorough and thoughtful assessment of their child" says Dr. Shashank Joshi of the Stanford Attention Deficit and Disruptive Behavior Disorders Clinic. A correct diagnosis of AD/HD "may take some time," says the American Academy of Pediatrics.
Sixteen years ago, Genie Hughes got a call from her son's preschool. Her son had thrown a classmate's sweater onto the roof and then crawled up himself to retrieve it. This was not an isolated incident. "I was called more often than not to pick him up," Hughes says. The preschool recommended that he be assessed. So Hughes began the long journey to find help for her son. It wasn't easy. People didn't know as much about Attention Deficit/Hyperactivity Disorder (AD/HD) then. "Everybody was very sympathetic," says Hughes. "But even though people wanted to help, there wasn't knowledge or the accessibility to the information. That was a road block for everybody. They were well-intentioned, but either misled or not up-to-date."
Hughes' son was three years old when he was first diagnosed. It wasn't until he was 10 that she found support through the national parent organization, CHADD (Children and Adults with Attention Deficit/Hyperactivity Disorder). When she found CHADD she felt as though she had finally arrived. "I knew that this was where I could get some help and some answers and support. Until that time I was really floundering."Hughes began by attending CHADD's informational meetings. Each focused on a different issue related to AD/HD. Hughes recalls that this was the first time that she and her husband finally heard an explanation of what the diagnosis meant. "We had been given this diagnosis by the physician, but that was it. No one said what the diagnosis is." The CHADD speaker provided a checklist of AD/HD signs and symptoms. "We checked everything off on the list," says Hughes.
The Hughes' went on to attend CHADD's national conference. "Ever since then, I've been committed," Hughes says. At the conference, Hughes appreciated hearing about the latest research on AD/HD. "It's not faddish or trendy," she says.
The Hughes' also found support from all the parents around them who understood what they had been through. "You could sit in a room with other parents and hear these stories and everyone in that room knew what the speaker was talking about—the difficulties that these kids present in the social area, the isolation that the parents feel. It was very, very comforting and supportive."
Hughes made many friends through CHADD. "I literally could not have gotten through it without them," she says. Hughes and her friends supported each other in numerous ways, including attending Individual Education Plan (IEP) meetings together at the school district. "The friend that I took with me could write notes or could say, ?You know what, we need to take a little break right now.' Because you're so caught up with your own emotions it's hard to even ask an intelligent question or know that you need to leave the room and take a break because things are getting overwhelming.
"Hughes' entitlement to an IEP meeting can also be credited, in part, to CHADD. In 1991, the organization was instrumental in advocating for the U.S. Department of Education to recognize children with AD/HD as eligible for special education and related services. CHADD continues to advocate for appropriate education, teacher training, insurance coverage, and other community services for children and adults with AD/HD.
Meanwhile, Hughes and her son have fared well. Now 19, Hughes' son attends college, works part time, and plays in a small jazz band. Hughes is now an educational consultant, helping parents find school programs for children with special needs.
Parent groups like CHADD provide support, information, and advocacy through
CHADD (Children & Adults with Attention Deficit Disorder):
www.chadd.org
National: (800) 233-4050
No. California: (510) 291-2950
ADDA (National Attention Deficit Disorder Association)
www.add.org
E-mail:
mail@add.org
Phone: (484) 945-2101
Parents Helping Parents
www.php.com
Phone:
(408) 727.5775
Protection and Advocacy (a legal advocacy organization)
Phone:
(213) 427-8767
OC & Spectrum Disorders Association
(818) 990-4830
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