Wednesday, June 27, 2007

Communicating--with Doctors and Other Treatment Professionals

Before turning to this week’s topic, I want to call your attention to VideoCHADD, a brand-new feature on our Web site. This week VideoCHADD presents an interview with Karran Harper Royal, CHADD member and the mother of a teenaged son with AD/HD. We will add more film clips as we develop this feature in the coming months.

Communicating with Clinicians
The May issue of the Journal of Attention Disorders includes a new feature titled “Clinical Commentary,” written by professionals for professionals. Professionals describe a "clinical" case and other professionals react to the clinical description. The commentary suggests four recommendations for clinicians dealing with more complicated "cases" of AD/HD and possible co-occurring disorders. CHADD and several colleague family organizations have been attempting for several years to convince professionals to humanize the way they view people with possible disorders. We prefer to be called people, rather than "cases."

Despite some sensitivity to the journal's terminology, the four recommendations are right on the money. Family members need to be aware of these recommendations, and maybe even remind some professionals of these recommendations, if not practiced. The four are:

1. Be patient and do not rush to judgment on assigning diagnoses.
2. Instill hope.
3. Clarify goals and prioritize interventions.
4. Monitor treatment closely and carefully and make adjustments as necessary.

The first recommendation advocates professional "understanding" of the person and getting the diagnosis correct. The second emphasizes the role of the professional in promoting hope to the "patient" and their family, so they understand and can successfully deal with the disorder. The third is the need to prioritize treatment interventions. The fourth documents the need to constantly monitor for changes—both negative and positive. As the father of a son with the inattentive form of AD/HD and co-occurring challenges, I found these recommendations very helpful. (See Kevin Murphy, "Reactions to Our Experts' Commentary on the Case of Sally," Journal of Attention Disorders, May 2007, page 42.)

Consumers Weighing the Evidence
CHADD is a member of the National Working Group on Evidence-Based Health Care, which was organized by Mental Health America.

On April 19, the working group conducted a forum on "Nothing About Us Without Us: Patient/Consumer Participation in Evidence-Based Health Care." The forum’s advocacy agenda highlighted the need to include patients and consumers in all parts of the development, review, and dissemination of evidence-based knowledge of health treatments, technologies, and services. It is the patient-consumer and his or her family who must implement the treatments recommended by clinicians. If the clinician is aloof and merely preaches, the odds of implementation are greatly reduced. If the researcher does not involve the consumer in the research design, the design may not work for persons with disorders in the real world. If the professionals do not involve the consumer in disseminating the information, it may be written in a form that the consumer can not understand. There must be collaboration, respect, and communication for treatments to be successful. It is the responsibility of researchers and clinicians to fully prepare patients-consumers and their families to participate in the process. This takes time and patience on the part of all participants. Part of this communication process means that patients-consumers receive complete information about benefits, risks, and possible unknown consequences of the possible interventions.

Role of Conferences and Support Groups
Skills in and experiences with communication between professionals and consumers and their families are learned and increased at the CHADD annual conference and the monthly support groups organized by many CHADD chapters.

We all want competent professionals who understand the latest knowledge about the science. But an important element in selecting and staying with a professional is comfortable and respectful communication. Many families will schedule an appointment to literally interview the professional about his or her knowledge and communication style. Frequently, health insurance will not reimburse for this initial interview process unless the consumer and family ultimately choose the professional. But such an interview can be a very valuable investment in the future. CHADD support groups offer an opportunity to discuss these professionals in an informal person-to-person dialogue.

I wish you success in locating and maintaining such professional relationships.


Wednesday, June 20, 2007

Educating the Media

Wouldn’t it be wonderful if the media was a source of information based on fact and evidence? If your child had attention-deficit/hyperactivity disorder (AD/HD) or any other disorder, you could turn to your preferred media outlet—newspaper, Web site, television or radio—and find stories grounded in reliable, accurate, science-based information. When reporters do their research responsibly, instead of sensationalizing, trivializing, opining or theorizing, the public good is served and awareness increases. When they don’t, we at CHADD spend another week trying to increase the media’s awareness of the importance of doing its job more responsibly.

Here’s a roundup of some of the reports involving AD/HD over the last couple of weeks…

Dietary interventions and AD/HD
A number of media outlets recently published stories asserting that AD/HD can be treated through dietary interventions. These stories relied exclusively on controversial books and information and did not report on what the science shows to be an effective treatment for the disorder.

There are two types of dietary interventions: one adds particular foods, vitamins or other "nutritional supplements" to one's regular diet, and the other removes or eliminates certain foods or nutrients from one's diet." The most publicized of these diet elimination approaches is the Feingold Diet. This diet is based on the theory that many children are sensitive to dietary salicylates and artificially added colors, flavors, and preservatives, and that eliminating the offending substances from the diet could improve learning and behavioral problems, including AD/HD.

Despite a few positive studies, most controlled studies do not support this hypothesis. At least eight controlled studies since 1982, the latest being 1997, have found validity to elimination diets in only a small subset of children "with sensitivity to foods." While the proportion of children with AD/HD who have food sensitivities has not been empirically established, experts believe that the percentage is small.

There is stronger published research about the advantages of one dietary supplement—Omega 3 fatty acid—for a variety of good health promotion, including conditions related to AD/HD.

Parents who are concerned about diet sensitivity should have their children examined by a medical professional for food allergies. Research has also shown that the simple elimination of sugar or candy does not affect AD/HD symptoms, despite a few encouraging reports. For more information on these treatment options, click here.

We at CHADD offer extensive science-based information about AD/HD on our Web site and on the Web site of the National Resource Center on AD/HD (NRC). CHADD also produces a rich package of benefits for its members.

Paris Hilton & AD/HD
Who’d have thought that as CEO of CHADD, I’d get such an education in pop culture. But that’s exactly what happened recently when word began to spread through the media that reality star and hotel heiress Paris Hilton has AD/HD. I must admit that I typically don’t keep up with Ms. Hilton; however, it is important to keep up with issues when AD/HD is mentioned. These reports have been unsubstantiated, but we encourage anyone who thinks (s)he has the disorder to seek a full evaluation from a medical professional. As I mentioned in a recently released statement, we want to emphasize that AD/HD should never be used as an excuse for bad behavior. We wish Ms. Hilton the best of luck as she moves on with her life.

And on to other news that is certainly fit to print…

I hope you have registered for CHADD’s annual conference, scheduled for Nov. 7-10, in Crystal City, Va. I have previously highlighted the attendance of James Carville and Ty Pennington’s mom at our 20th anniversary gala dinner celebration. Radio and television sports announcer Johnny Holliday has agreed to serve as our master of ceremonies. Johnny is the father of a young woman with AD/HD.

We will continue to arrange interesting speakers for the conference. We hope that you will peruse the conference section of our Web site to learn more about the offerings at this year’s event and to register to attend. We welcome everyone, including members of the media.

Who knows—while it will be held in Washington, you may even see Paris there! Stay tuned…


Wednesday, June 6, 2007

A Very Special Conference

Hopefully you’ve noticed that registration is now open for CHADD's 19th Annual International Conference on AD/HD, which will be held November 7-10, in Crystal City, Va., a suburb of the nation's capital.

Our conference always brings people with different backgrounds together under one roof to share ideas, science-based information, promising practices, and inspirational stories. It’s a great opportunity to network, learn and even earn continuing education credits.

This year is CHADD’s 20th anniversary, so we plan to celebrate at Conference by hosting a special gala dinner on Nov. 8. You probably know by now (with the help of a big announcement on our Web site) that James Carville, one of the best-known political strategists in Washington and an individual who lives with AD/HD, will be speaking at the gala dinner. It is certain to be a lively speech. Mr. Carville will speak about dealing with his own AD/HD.

Also, special to this year’s conference, we plan to take full advantage of the fact that the conference will be held in the nation’s capital. We will be busing our conference participants up to Capitol Hill for a highly structured day of meetings with their congressional delegations.

This will be an excellent way to bring home to members of Congress how AD/HD affects the lives of their constituents. And just imagine what it will look like to have over 1,000 people who are affected in some way by AD/HD walking around Capitol Hill. What a statement that will make! You won’t be alone. Staff and volunteer leaders will serve as resource guides with state delegations during the visits.

Several members of the U.S. Congress, including those running for president, have verbally stated their desire to speak to conference attendees. We are not yet able to publicly announce who they are.

At the gala dinner, Ty Pennington’s mother will discuss dealing with Ty’s AD/HD, we will honor several members of Congress who are advocates for those with mental health and disability challenges, and we will be entertained by the Capitol Steps, a popular musical political satire group.

Consistent with a theme from our sister association, the National Alliance on Mental Illness (NAMI), of “Parents and Teachers as Allies,” this year’s conference will dedicate a separate track to assisting teachers in successfully dealing with AD/HD.

The social movement continues!

Oops, we hope she won’t do it again…
Yes, my headline borrows from Britney Spears’ popular song. While I am several generations away from the young people who listen to Ms. Spears’ music, our communications staff briefs me on these cultural developments.

My son Andrew has AD/HD-Inattentive Type, as well as other co-occurring conditions. So, like other people affected by AD/HD, I took issue with a flip statement Ms. Spears made recently that referred to people with AD/HD as being “bad.” AD/HD is neither “bad” nor willful; it is a neurobiological disorder that needs a “multi-modal” approach to help.

Of course, Ms. Spears doesn’t have the professional training of someone like Joyce Brothers, Ph.D., who recently referred to adults with AD/HD as being hypochondriacs. As you know from previous blog entries, I fired off a letter to Dr. Brothers and then CHADD’s communications staff took the lead in organizing a group response from our sister organizations.

Add to these statements the outrageous and unscientific information that is published everyday in both small and large news markets, and you can clearly see that we have our work cut out for us. Here are some things you can do when you see misinformation or read a cutting comment about AD/HD.

Five tips for combating misinformation and negative comments about AD/HD
1) Write a letter to the editor. If you see something you disagree with, let people in your community know what you think and, most importantly, what the science says. You can find information on the CHADD Web site or at the CDC-funded National Resource Center on AD/HD.
2) Find a reporter’s contact information, and send a letter directly to him or her. Forward an article from Attention magazine or some information from the aforementioned sites. Tell the reporter that he or she can contact CHADD’s communications and media relations department for some creative and science-based story ideas.
3) Enlist the help of a CHADD Chapter Coordinator if the issue is local and you want to brainstorm on how to respond. Our chapter coordinators will contact the CHADD communications department if the need arises.
4) Become a part of our social movement—join CHADD today. Besides getting the magazine and being a part of something bigger than yourself, membership also means you’re joining forces with other to support an organization that is effective in the state and local public policy arenas, with local and national media, and in delivering evidence-based information to the public.
5) Visit the National Alliance on Mental Illness’s (NAMI) StigmaBusters site. StigmaBusters is a network of dedicated advocates across the country and around the world who seek to fight inaccurate and hurtful representations of mental illness. You can learn more at

As we celebrate CHADD’s birthday, we recognize the difference the organization has made over the last 20 years. But with your help we plan to make an even bigger splash in the years ahead.