Tuesday, March 27, 2007

Dealing with Perceptions

Media Frenzy
An interesting situation occurred this past week involving the anti-psychiatry groups (those who deny the existence of mental illness and mental disorders). A British newspaper reported that Dr. Robert Spitzer of Columbia University, chairman of the task force that created the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM), supposedly stated that between 20 and 30 percent of persons with AD/HD may have an incorrect diagnosis. News outlets around the globe repeated the supposed statement. The anti-psychiatry groups claimed that this affirms that AD/HD is a "fraud," that it is a "made-up" diagnosis, and that medication treatment for AD/HD leads to "dependency on toxic drugs" and "cardiac death." (The only factual statement in these declarations is that for persons with cardiac problems, stimulant medications may create serious side effects. One needs to discuss this possibility with one's physician and other prescribing medical professionals.)

Now the really interesting development: Media Watch reported that Dr. Spitzer never said this (see the story titled "Fact Deficit Disorder"). Dr. Spitzer was speaking to the British reporter about adult anxiety disorders, not AD/HD. And he never used the figure 20 to 30 percent; rather, the reporter used the 20 to 30 percent figure in Dr. Spitzer's presence. Most of the anti-psychiatry crowd has remained silent on what Dr. Spitzer actually said. One anti-psychiatry group stated that they merely used the British press report—and besides, maybe adult anxiety disorders don't exist, and these folks may be prescribed "psychotropic drugs with no justification."

This reinforces for me the need for people facing possible AD/HD in their families to dialogue with medical professionals who practice evidence-based AD/HD diagnosis and treatment guidelines, such as those used by the American Academy of Pediatrics and the American Academy of Child and Adolescent Psychiatry. There are side effects, some serious for some people, with medications used to treat AD/HD. Previous CHADD CEO blogs have addressed some of these dilemmas and science-based conclusions, such as the Surgeon General's Report on Mental Health. Potential users of these medications need to research the medications on the U.S. Food and Drug Administration Web site, and related Web sites such as the National Institute of Mental Health, and the Centers for Disease Control and Prevention.

It also teaches me the lesson of not being sucked in by media hype spurred by anti-psychiatry media machines. These are serious challenges for many people. These are serious decisions by all families. The science tells us that multimodal treatment works for between 75 and 90 percent of children with AD/HD. Rely on your medical professional, assuming you have confidence that they practice evidence-based medicine, and don't get wrapped up in media frenzies.

Insurance Policy Established by Perceptions
Last week we received a complaint from a physician whose health plan had denied an adult patient with AD/HD medication on the basis that the patient was not a child. This is a decision based on perceptions from a decade ago that AD/HD disappears at some magical adolescent age. This perception does not recognize the evidence that AD/HD is a life-span disorder and continues into adulthood for many, but not all, people with the diagnosis in childhood. I wrote the health plan and encouraged its medical advisory panel to examine the National Resource Center's "What We Know" information sheets on adult issues (papers 9 and 10). An effective approach to changing health plan benefit programs is frequently a discussion of the science with the plan's medical advisory board. Before going to health insurance regulations, legislators, professional societies, and the media, CHADD hopes a discussion of the science with the plan will change benefit design. I won't reveal the health plan until our efforts to discuss the science have concluded. This usually takes months of discussion. If unsuccessful, we will engage in direct public advocacy efforts.

If you experience health plan discrimination, please let us know.

Coming Soon—Comedy Movie on Suicide
CHADD has joined with the Suicide Prevention Action Network (SPAN USA) and 14 other national mental health associations, in writing Liongate Entertainment Corporation and After Dark Films to object to their planned marketing campaign showing graphic depictions of suicide to advertise their forthcoming movie, Wristcutters. One of the most devastating occasions of my life was when my best man's wife, an active member of our church, concluded that her depression was so grave and prolonged that she gave up the will to live, and committed suicide. I try not to think about this, for when I do I become very upset. I have known this couple since 1973. This is not a comedy. This is not behavior to encourage. This is perception at its worst, with the most serious consequences.

This week has been a difficult one for me, dealing with public perceptions that undermine the health and welfare of persons with difficult challenges. CHADD is here to build a social movement to articulate and defend the needs of persons with AD/HD and related disorders. Thanks for listening. Thanks for supporting our efforts.


Wednesday, March 21, 2007

Dealing with Attitudes

A recent professional journal article reported on a study that asked a random sample of parents about their attitudes toward their children playing with children who had symptoms of asthma, AD/HD, depression, and “normal troubles.” The interviewers, sociologists at Indiana University, did not use diagnostic labels with the parents they interviewed and instead used descriptive vignettes. A summary of the article is available from the free electronic newsletter, Attention Research Update, by Duke University faculty member David Rabiner, Ph.D. (to subscribe, go to www.helpforadd.com). The article, “The Construction of Fear: Americans’ Preferences for Social Distance from Children and Adolescents with Mental Health Problems,” by Jack K. Martin and colleagues, originally appeared in the March 2007 issue of the Journal of Health and Social Behavior (Volume 48, pages 50-67).

Out of 1,393 parents, 30% stated that they would not want their children to become friends with a child with depression, and 25% stated that they would not want their children to become friends with a child with AD/HD. Only 10% expressed such views about children with asthma and 5% about children with “normal troubles.” The core message is that some parents do not want their children spending time with children who have these challenges. The researchers conclude that “a substantial minority of American adults are reluctant to interact with or to have their children interact with children described in ways consistent with ADHD or depression.”

My personal experiences with our now 16-year-old son, Andrew, are really not a problem with parental attitudes. Parents in our community seemed to have no problems with Andrew playing with their sons. Parents were generally open and receptive. The problem was that Andrew’s interests and abilities generally did not match those of the other boys, and thus Andrew became lonely. Scouts, community sports, and church were arenas where Andrew could participate with other children. He was still different and still not an equal peer, but with some exceptions, he was treated decently. There are always the boys who say harsh and unkind things. There are also enough boys with special needs in our community so that Andrew developed a handful of friends with whom he was comfortable. Parents of kids with special needs organized special outings and gatherings so their children could have regular and normal fun.

The Microsoft dictionary defines “stigma” as “shame and disgrace attached to something regarded as socially unacceptable.” Stigma leads to loss of self-esteem, internalization of negative self-images, anxiety, and social isolation. Andrew has experienced all of these growing up, but I don’t attribute them to parental attitudes in our community. I attribute them to his “differentness” and how regular boys think and act. Of course, when a kid told Andrew at soccer practice, “Andrew, you stink; why don’t you go home,” and his dad was standing there, I did wish his dad had said that was no way to act. But I also did not comment to the father about his son’s comment.

We each have to determine our own comfort level with attitudes about disabilities and how to deal with them. My wife and I have tried to be honest with everyone. Neither of us is assertive with other parents. Church, scouts, and community sports have presented positive opportunities for Andrew to be accepted and integrated into regular activities.

Social rejection is a highly painful life experience for the child and the family. Support groups, such as CHADD support groups, can be helpful coping mechanisms.

An Update About Baseball
Andrew and I just returned from our first baseball spring training experience in Florida – six games in six days. Andrew’s highlights were meeting with Cincinnati Reds player Jeff Conine and attending an autograph session with Boston Red Sox players. One of Jeff’s sons has AD/HD and the Conine family was featured as the cover story in the October 2006 issue of Attention!® magazine. Andrew has matured a lot since he entered his new school this year. He was a good traveling partner and we have grown much closer. Life, of course, always throws “curve balls.” I severely sprained my lower back and Andrew came down with shingles, thus delaying his return to school. But we have to be flexible and adaptable in life. The memory of six games in six days as father and son will be with us for a lifetime.

Blog Comments
Three comments were submitted in response to my last blog. One was the relationship of sleep disorders to AD/HD. Our National Resource Center on AD/HD “What We Know” papers discuss these issues in passing, but we do not yet have a dedicated paper on this topic. We know that sleep problems are a side effect of some AD/HD medications. We know that sleep disorders can sometimes cause symptoms of AD/HD. The CHADD professional advisory board will be developing a clearer and separate statement on this problem. We will also be consulting with the National Sleep Foundation.

Comments continue coming in about the role of faith communities and churches in dealing with folks with special needs. A parent wrote: “Make sure your child is getting all the interventions necessary” to help in these situations.

One commentator raised questions about a medical doctor’s prescribing recommendations. When you are in doubt about a recommendation, first ask the doctor questions. If you are still unsatisfied, second and third opinions must be sought. These are difficult and challenging decisions. You need to know what the Food and Drug Administration recommends. You need to know the logic of the prescribing doctor. Whenever you are in doubt, ask not only physicians, but pharmacists and non-physician professionals who have a history of treating your family member. Physicians and pharmacists use the Physicians Desk Reference. This guide is not available for free, but you can ask your doctor and pharmacist to let you see the appropriate sections. You must have confidence and comfort that a medication recommendation is right for your family member.


Wednesday, March 7, 2007

Collaborations and Challenges

Collaborating To Improve Child Mental Health
Last Friday, CHADD national president Anne Teeter Ellison and I attended our third children's mental health family summit. Facilitated by the American Academy of Child and Adolescent Psychiatry (AACAP), the summit meets twice a year, and workgroups meet between meetings. Besides the AACAP and CHADD, associations collaborating through the summit include the Autism Society of America (ASA), Child and Adolescent Bipolar Foundation (CABF), Federation of Families for Children's Mental Health (FFCMH, Mental Health America (MHA), and National Alliance on Mental Illness (NAMI). Our objectives are to enhance access to and knowledge of science-based treatments and supports, and to counter anti-psychiatry attacks on the legitimacy of such treatments and supports. The summit is one of those opportunities that national association leadership offers. One of our priorities is to encourage and support such collaborations at the state and local level. Families and professionals need better understanding and more respectful dialogue. These meetings complement CHADD’s efforts to build a social movement to assist persons with AD/HD and related disorders.

AACAP has just produced materials, including a booklet, video, and practice parameter on AD/HD.

Challenges in the Faith Community
Part of my family’s success in dealing with AD/HD in our family has been due to our church. Four boys with special needs, including our pastor’s son—all within two years of age of each other—grew up and came through the church together. Our church community was an important natural support for our son and family.

Two events occurred last week that saddened me, as a Presbyterian, and reinforced how much more CHADD needs to do to more effectively educate the public about AD/HD and related disorders. The published science states that AD/HD is a neurobiological disorder, a biologically based disorder of the brain. Go to the National Resource Center on AD/HD Web site to see the CHADD professional advisory board consensus statements summarizing the published science on AD/HD.

Last week, the NAMI Multicultural Action Center shared a February 23 Chicago Tribune article reporting the following incident. A minister had been talking with God and he told a member of his church, who said that she had depression, that she was cursed due to her sin. The good reverend advised the woman to stop taking her medications and pray for forgiveness. She complied, and soon thereafter threw herself down a flight of stairs in an effort to commit suicide.

A day or two later, we received an e-mail from a distressed CHADD member. She and her husband had attended a Christian marriage enrichment weekend and reported that the one booklet resource available to all conference attendees described AD/HD as a "spiritual problem," meaning a sin. CHADD will write the conference organizers and attempt to begin a dialogue.

CHADD has developed and will be expanding our outreach efforts to better inform faith communities about the science of AD/HD. And we are attempting to better understand the importance of faith for some people in dealing with their AD/HD. Several CHADD community forums have included faith communities in the presentations. At last year's CHADD annual conference, we offered our first session on natural supports, including the potential role of faith for some families with AD/HD. Faith communities and CHADD have as our shared goal the promotion of healthy individuals and families. There is much we can do to enhance dialogue and overcome artificial barriers to accessing science-based assistance. A social movement supporting individuals with AD/HD not only advocates legal protections and government assistance when warranted, but also puts in place peer and community supports, including nonprofessional natural supports.

There are resources to assist persons with mental disorders in communities of faith. These include www.faithnetnami.org (a program of the National Alliance on Mental Illness); www.keyministry.org (a listing of churches with special programs for persons with mental disorders through the Key Ministry Foundation); www.mentalhealthministries.net (another program that lists churches with special programs through the Pathways to Promise program); and www.ncccusa.org (the National Council of Churches, which produced a video, “Shadow Voices: Funding Hope in Mental Illness”).

Challenge: Avoiding Conflict of Interest
CHADD board of directors' policy stresses that CHADD does not endorse services, publications, medications, treatments, or professionals. We clearly state this in ATTENTION!® magazine and on our Web site. To diversify our revenue and to allow access to community resources without endorsing, CHADD allows paid advertisements in our magazine and on our Web site. National volunteers sign conflict of interest avoidance statements.

Many of us are vulnerable to non-scientific claims as we search for assistance. During the past year, several situations have arisen with individual CHADD chapter leaders. CHADD chapter leaders are required to sign conflict of interest avoidance statements whereby they will not use CHADD chapter meetings or lists of CHADD members to advertise and promote their services or products. Almost all CHADD chapter leaders are volunteers whose motivation is to provide a community resource to persons with AD/HD and related disorders, without personal gain. Their motivation is what makes America great: uncompensated voluntary work to organize and run a community resource for persons in need. For those of us at the national level—both paid staff and uncompensated volunteers—this is an inspirational and motivating force in our daily lives, role-model volunteers helping others. We apologize when a few individuals misuse their position of assistance to sell products and services. CHADD members and CHADD leaders take possible conflicts of interest very seriously.

No CEO Blog Next Week
My son has a break from school and he and I are off to our very first spring baseball training games in Florida. Every parent and child needs some areas of common interest to better bond. Baseball is one of those areas for Andrew and me.