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ADD/ADHD: Parent Support Groups

coping add art.jpg

Even though it's the kind of cold, stormy night that discourages people from going out, a dozen women from the Washington, DC, suburbs have braved the weather to gather in a meeting room at a local library and share their tears, fears, anger, and hopes.

"My son went on a Boy Scout camping trip this weekend. The leader didn't give him his medicine. I'm ready to shoot the scoutmaster -- he's messing with my life!" explodes Cheryl*, a mother of a son with ADHD -- Attention Deficit Hyperactivity Disorder. "This is a man whose son is diabetic. If anybody should have known how important medicine is, he should've."

Cheryl and the others gathered together this evening are parents of children so affected by distractibility, impulsivity, hyperactivity, or a combination of the three that they cannot function normally in school or other settings and are at risk for academic failure, family conflict, and social problems. ADD (also called ADHD when hyperactivity is a factor) is the most common childhood mental disorder.

Because an increasing number of children are, like Cheryl's son, treated with the stimulant Ritalin (methylphenidate) and other powerful psychotropic drugs, ADD has become a hotbed of controversy, generating lawsuits, congressional hearings, and an avalanche of media coverage. Thrust unwillingly into the spotlight, parents of children with ADD often find themselves forced to deal with both their child's difficulties and a lack of understanding from family, friends, and school officials. CHADD -- Children and Adults with Attention-Deficit/ Hyperactivity Disorder, a national organization that informs and empowers families affected by ADD -- sponsors more than 200 chapters with support groups like this one to give them a place to air their feelings without fear of judgment.

Life with ADHD and Sensory Processing Disorder
Life with ADHD and Sensory Processing Disorder

For two hours, the parents at the table discuss spouses in denial, teachers who don't understand ADD, and schools that fight special accommodations. There is talk of a new, longer-acting form of Ritalin, of which county school system provides the best special education, and of which local pediatricians are most skilled at diagnosing and treating ADD. For every person with a problem, there is another who offers a story of her own for comfort, a suggested solution, or a smart place to turn for help. For parents like these, CHADD is proof that they are not alone.

Started in 1987 by a group of parents of children with ADD in Florida, CHADD has grown to a 22,000-member organization with 225 chapters in 37 states. The group has become a major voice lobbying for the rights of those with ADD. CHADD succeeded, for example, in having the disorder included in the 1997 Individuals With Disabilities Education Act, which protects the educational rights of children with special needs. Because of this, thousands of children with ADD get special education through public schools.

A SOURCE OF ADVICE
When parents are isolated, they don't realize that other parents are going through the same thing," says Loretta Buckner of Charlotte, NC, adoptive mother of two boys, 11 and 6, both of whom have ADHD. Buckner's older son, Nathan, was diagnosed at 5. Here was a child who broke his arm while climbing into his brother's crib, who got kicked out of one kindergarten on his third day, and who was put on probation at his next school for hanging out a second-story window. A recently released study by the Mayo Clinic in Rochester, MN, found that children with ADHD have higher rates of injury than their peers. But Buckner remembers feeling as if only her child had these kinds of problems.

She found solace and advice in the voice of a fellow ADHD parent who manned the phones for the local CHADD chapter. "It was just nice to have someone on the other end of the line who had been there and experienced what I was going through," she says. That's why Buckner tries to keep support groups in her area running, even when attendance is slim.

Another CHADD goal is educating members, teachers, and the general public about this disorder. "We have a professional advisory board of 21 clinicians and researchers that keeps the organization current on evidence and science [related to ADD]," says E. Clarke Ross, who became CEO of CHADD last November. The job is especially meaningful for Ross, whose son Andrew, 10, has ADHD and other disabilities.

Relying heavily on established sources like the AAP and the National Institute of Mental Health, CHADD publishes the latest on diagnoses and treatment for ADD in fact sheets, on its Web site, and through a series of publications including the glossy quarterly magazine Attention!, all of which members receive for $45 per family annually. Every CHADD chapter sponsors monthly support groups and informational meetings, choosing its own speakers and topics. Over the next few months, the Northern Virginia chapter will host speakers on diagnosis and treatment, different learning styles, summer activities, IEPs (individualized education programs, for children who receive special education services through public schools), and behavior management.

Ross says that CHADD's membership has stabilized over the past few years after more than a decade of growth. Some believe the plateau has been reached because ADD families are too stressed to add an extra responsibility. But others maintain that negative publicity has hurt the organization.

CHADD inspires passion among critics as well as supporters. Some opponents even accuse CHADD of being part of a conspiracy to label active, spunky kids as mentally ill and drug them to cover up for poor parenting and teaching.

John Breeding, Ph.D., likens CHADD to a public relations firm for drug companies. "I think the group has been largely funded by the manufacturer of Ritalin," says Dr. Breeding, an Austin,TX-based psychologist and author who does not believe in the ADD diagnosis or treating kids with psychiatric drugs.

CHADD accepts grants from several firms that produce drugs used to treat ADD, including Novartis, manufacturer of Ritalin. In 2000, 8.6% of the group's funding came from pharmaceutical firms, compared to 46% from members' dues. It is not uncommon for researchers or organizations to accept donations from pharmaceutical corporations, says Russell A. Barkley, Ph.D., professor of psychiatry and neurology at the University of Massachussets Medical School in Worcester and CHADD advisory board member, who adds that such donations are ethical as long as they have no strings attached. CHADD publishes guidelines stating, essentially, that the organization will not let donations influence the information it distributes. But that policy has not kept the group from coming under attack.

THE CASE AGAINST CHADD
CHADD has been named as a defendant -- along with Novartis and the American Psychiatric Association -- in class action lawsuits in California, Florida, New Jersey, and Texas. The suits have alleged that ADD was overdiagnosed, Ritalin overprescribed, and parents inadequately warned about the drug's side effects. Charles S. Siegel of Waters & Kraus, LLP, the attorneys for the plaintiffs in Texas, says that the group is accused of acting as "a conduit for promoting the drug."

Last March, a federal judge ended up dismissing the California suit, stating that the plaintiffs had produced no evidence to support their allegations. The ruling seems to have influenced the outcome in other cases. In May, a district court judge dismissed the Texas case, and in June the Florida plaintiffs officially withdrew their complaint.

Ross feels vindicated by these developments. But he remains distressed about continuing attacks on ADD and medication. "We're very concerned that a nationally organized campaign hopes to sew seeds of doubt in the minds of families facing the challenges of ADD," he says. "Some people want to deny the existence of childhood mental disorders, including ADD, and in doing so they deny the science behind treatment options -- which includes stimulant medication."

ADD IN THE COURTS Last year, Dr. Breeding and others successfully lobbied the Texas Board of Education to pass a resolution condemning medication and urging schools to recommend other strategies, including tutoring, phonics, and allergy testing, to solve children's behavioral difficulties. The resolution stated that "there are documented incidences of highly negative consequences in which psychiatric prescription drugs have been utilized for what are essentially discipline problems."

Colorado passed a similar resolution last year, and Connecticut just signed a law that prohibits teachers and other school officials from recommending psychiatric drugs for any child. This year legislatures in 28 other states are considering laws involving children and psychiatric medications.

In the past, says Ross, CHADD had been such a grassroots, volunteer-oriented group that it had focused on member activities and tried to avoid the vitriolic debate surrounding ADD. But Ross, who joined CHADD from the National Alliance for the Mentally Ill, says that will be changing. "We're going to start educating members and the public about this assault."

A SPECIAL STRUGGLE FOR PARENTS
Deciding to put my child on medication was very difficult," says Lorna Good* of Long Island, NY, whose son, Ned*, 5, is on two medications and seeing a therapist to control his ADHD and other behavioral problems. "My child was aggressive, couldn't play with other children, would become easily overstimulated, and couldn't wind down," says Good. Initially, she felt guilty about medicating her son. But after several meetings with a pediatrician, psychologist, neurologist, and neuropsychiatrist, she changed her view: "I realized that he's a child with a disability. He needs something to help him focus and control his explosiveness so he can be a successful person."

CHADD offered Good a place where she felt her son and her decisions about his treatment were accepted. Her local chapter even has a support group just for parents of preschoolers. There, she says, "my kid is not so different. There are other parents who have children just like mine." Some CHADD parents even reach the conclusion that their children are just like themselves. According to the 2000 Surgeon General's Report on Mental Health, about half of parents with ADD will have a child with ADD. While some parents were diagnosed as children, others discover they have the disorder only when their children are diagnosed.

This was the case with Good. The CHADD checklist of ADD symptoms provoked an epiphany. She had wondered why, despite medication and therapy, her son wasn't getting better. "So I held up a mirror," she says. Good realized that she had ADD and as long as it went untreated, her household would remain chaotic and her son would never progress. Fortunately, she says, "I had access to great physicians and to my CHADD chapter, and it enabled me to move through this process."

While the argument over CHADD's role in the diagnosis and treatment of ADD certainly exists, for the parents who've been helped by CHADD there is no debate. Life with children with ADD can be hard and lonely. Without CHADD, they say, it would only be harder and lonelier.

"You're an island, you're alienated from normal relationships," says Good. "What can I say -- 'My child has a disability and I'm afraid to bring him to your house'? I don't have many friends, obviously." CHADD helps replace those lost friendships.

"We've definitely lost friends because of ADHD," echoes Carol Sadler, an Atlanta-area homemaker who discovered that she has ADHD after joining CHADD because her daughters, Christina, 10, and Angela, 7, have the disorder. "It's almost like they were afraid to have their children around ours. And then you also have to deal with the people who speak up and say, 'If you had better parenting strategies, you wouldn't have to medicate.' It gets tiresome. You constantly feel like you are explaining your life. CHADD is a relief from that."

*Some names have been changed to protect privacy.

Copyright © 2001. Reprinted with permission from the October 2001 issue of Child magazine.

All content here, including advice from doctors and other health professionals, should be considered as opinion only. Always seek the direct advice of your own doctor in connection with any questions or issues you may have regarding your own health or the health of others.