AD/HD is frequently characterized by an inability to stay focused on a task—repeatedly and significantly. The Sunday, August 17 issue of the New York Times featured an article on Michael Phelps, “AD/HD Didn’t Keep Phelps From Finding His Focus—On the Gold.” Teachers throughout his early school years observed that Michael could not focus to achieve goals. Yet, no Olympian has won more medals than Michael.
My son Andrew is 17. First identified at age 11 months as having developmental delays, Andrew has always had significant trouble staying focused on the task at hand. And he still faces attention challenges. Yet, this summer, he obtained and succeeded in his first paid job. His self-esteem has increased while mastering what the world expects—gainful employment. No Olympic medals, just modest but meaningful goal attainment. To Andrew, his mother, and me, these are significant.
Robert Brooks, PhD, has emphasized at CHADD conferences over the years the need for each of us to have and use our "islands of competence." As Andrew grows and matures, his islands of competence continue to expand. He is still very anxious, still socially awkward, still has learning challenges, and still has major doubts. But he is succeeding.
It’s interesting to read the many stories about Michael Phelps. Teacher after teacher told Michael’s mother that he could not focus, he could not stand still, he could not be an academic success. But he was academically okay and his island of competence was swimming—and now he is the greatest swimmer of his generation and holds the most ever Olympic medals. It’s important for people living with AD/HD to pursue interests they enjoy and at which they excel. Phelps’ success demonstrates that being a part of a supportive family, setting goals, engaging in enjoyable activities, and receiving positive feedback are all important in building self-esteem. Phelps is clearly an exceptionally talented athlete and a source of pride for the millions of people affected by AD/HD.
Andrew’s goals are much more modest. This summer he participated in a summer school program where in the mornings he focused on getting ready to pass “No Child Left Behind” state standardized exams so he can graduate next year from high school. In the afternoons he assisted the school’s IT director—for pay—by loading new software on school and faculty computers. Loading computer software is now an island of competence. In the late afternoons and evenings he enjoyed field trips, including attending four minor league baseball games.
Those who know us and those who have read my previous blogs know that Andrew and I share a passion for baseball—for the Baltimore Orioles, for the Boston Red Sox, and for the two major league players we have met through CHADD who are connected to AD/HD, Scott Eyre and Jeff Conine. This summer Andrew took his passion and joy for a sport and turned it into paid employment. Through friends at church, Andrew applied to the Bowie Bay Sox—the Anne Arundel County affiliate of the Baltimore Orioles, ten minutes from our home. This weekend Andrew began his employment as a main gate ticket taker. He has to arrive an hour before the gate opens. He has to help set up the gate area. He has to get organized to retain the ticket stubs after taking them. He has to be patient and friendly. His work is done by the top of the fourth inning, and he gets to see the last five-plus innings of the game. It’s not Olympic gold, but it is normal life and attainment of a life goal—paid employment in an arena that he enjoys.
With support, focus on a goal, and effort, people with AD/HD can succeed. Some receive New York Times coverage. Some are worth a good feeling inside and hope for the future.
As you struggle with your own AD/HD or as you struggle with your family member’s AD/HD, be satisfied with every little step toward success and happiness.
Clarke
Wednesday, August 20, 2008
Tuesday, August 12, 2008
Dealing with Health and Educational Disparities
For the fifth consecutive year, CHADD was actively involved in the annual convention of the National Medical Association. CHADD’s mission is to improve the lives of people affected by attention-deficit/hyperactivity disorder and related conditions. NMA’s mission is to advance the art and science of medicine for people of African descent.
At this year’s NMA conference, CHADD hosted a dinner for the NMA section on psychiatry and behavioral sciences, offering presentations about AD/HD that covered the lived experience, public attitudes, and special education placement. CHADD also hosted a community forum on AD/HD at an African-American church in Atlanta.
The success of the dinner typifies CHADD. The event was a perfect example of professionals and family members educating each other and sharing their experiences. NMA psychiatry section chair Diane Buckingham, MD, who also serves on CHADD’s professional advisory board, served as emcee. The featured speaker was Karran Harper Royal, a mom from New Orleans and former member of CHADD’s board of directors. Karran spoke movingly about the experiences of her brother and her two sons, all of whom live with AD/HD.
Here are some points to ponder:
Disabilities occur at a higher rate among individuals who are African American (19.2 percent) and Hispanic/Latino (26.1 percent) than among Caucasians (18.9 percent).
African-American children are under-represented in treatment for AD/HD when compared with Caucasian children.
For African-American children with Down syndrome, life expectancy has not kept pace with increases in life expectancy for Caucasian children with Down syndrome.
African-American children with autism are typically diagnosed five years later in life than Caucasian children with autism.
Something is clearly wrong here.
With the March of Dimes, CHADD co-chairs an advocacy coalition working to convince Congress to appropriate $5 million to address racial and health disparities in health outcomes for the special populations served by the Centers for Disease Control and Prevention. Health disparities are defined as the differences in the presence of disease, health outcomes, and access to health care across groups.
As CEO, one of my commitments has been to engage in meaningful and respectful outreach to the African-American community. This has been demonstrated through CHADD’s relationship with the National Medical Association, the roughly forty community forums that have been held since 2001, and my efforts as co-chair of the workgroup on health-care disparities.
Economic times are tough and CHADD’s revenue is down. It is harder to continue this work. But we are committed to continuing our work in the coming years. If you can provide financial support to help us continue this work, let us know.
Clarke
At this year’s NMA conference, CHADD hosted a dinner for the NMA section on psychiatry and behavioral sciences, offering presentations about AD/HD that covered the lived experience, public attitudes, and special education placement. CHADD also hosted a community forum on AD/HD at an African-American church in Atlanta.
The success of the dinner typifies CHADD. The event was a perfect example of professionals and family members educating each other and sharing their experiences. NMA psychiatry section chair Diane Buckingham, MD, who also serves on CHADD’s professional advisory board, served as emcee. The featured speaker was Karran Harper Royal, a mom from New Orleans and former member of CHADD’s board of directors. Karran spoke movingly about the experiences of her brother and her two sons, all of whom live with AD/HD.
Here are some points to ponder:
Disabilities occur at a higher rate among individuals who are African American (19.2 percent) and Hispanic/Latino (26.1 percent) than among Caucasians (18.9 percent).
African-American children are under-represented in treatment for AD/HD when compared with Caucasian children.
For African-American children with Down syndrome, life expectancy has not kept pace with increases in life expectancy for Caucasian children with Down syndrome.
African-American children with autism are typically diagnosed five years later in life than Caucasian children with autism.
Something is clearly wrong here.
With the March of Dimes, CHADD co-chairs an advocacy coalition working to convince Congress to appropriate $5 million to address racial and health disparities in health outcomes for the special populations served by the Centers for Disease Control and Prevention. Health disparities are defined as the differences in the presence of disease, health outcomes, and access to health care across groups.
As CEO, one of my commitments has been to engage in meaningful and respectful outreach to the African-American community. This has been demonstrated through CHADD’s relationship with the National Medical Association, the roughly forty community forums that have been held since 2001, and my efforts as co-chair of the workgroup on health-care disparities.
Economic times are tough and CHADD’s revenue is down. It is harder to continue this work. But we are committed to continuing our work in the coming years. If you can provide financial support to help us continue this work, let us know.
Clarke
Wednesday, July 23, 2008
Public Attitudes
In the last several days lots of activities have me focused on public attitudes and public understanding about AD/HD and related disorders.
CHADD has worked this week with potential legislative sponsors on a renewal of U. S. Senate recognition in September of AD/HD Awareness Day. This coming Saturday, I speak to the National Medical Association’s section on psychiatry and behavioral science on public attitudes and AD/HD and special education placement issues. Last Saturday, CHADD conducted a public forum targeted to the African-American community in Prince George’s County, Maryland, where community attitudes were discussed. And we have radio talk show host Michael Savage and his colleague Selwyn Duke making declarations this week about the “fraud” of autism, added to their previous declarations about the “fraud” of AD/HD, and the reaction of family members to these declarations.
Family support groups, such as CHADD, have a mission to increase awareness of these disorders to foster a greater level of acceptance and understanding of the very real and significant challenges individuals with disorders and their families face. Growing up and living with substantial disabilities in daily life are emotionally, physically, and financially draining. My family is so fortunate to have supportive extended family, caring community of faith, financial and health insurance resources, and informed communities and networks. With all of this, it is still difficult to deal with our challenges, expectations, emotions, and pain. Negative, hostile, antagonistic public attitudes from some individuals don’t help.
We are all aware of the organized groups that deny the existence of mental disorders and declare that these disorders are fraud. But others in society who are not apparently connected with these organized anti-psychiatry groups foster this notion that AD/HD, autism, and other behavioral challenges are “willful” actions by “brats” with inadequate parental direction. My son’s 17 years of difficulty are not willful; he is a delightful and kind person, and he has loving, supportive parents and family.
Just after the last presidential election, Armstrong Williams declared: “There is no scientific basis for the diagnosis of AD/HD. If a child is bored, distracted, and or boisterous in the classroom, he is often believed to be suffering from AD/HD, or to say, childhood.”
This week, Michael Savage declared that autism is a “fraud” and a “racket”, adding that “in 99% of the cases, it’s a brat who hasn’t been told to cut the act out.”
Part of me says let’s just ignore such ignorance and get on with helping our family member grow, develop, and live as normally as possible. Let us work with the professional community and fellow families to build supports. But a mission of CHADD is to rely on our professional advisory board to share the published scientific evidence to counter the spread of misinformation. So part of me says prepare a blog on this subject.
To defend themselves against the public outrage from autism groups across America, from advertisers pulling their financial support of his program, and from radio networks discontinuing sponsorship of his program, Michael Savage and his supporters say that they are just trying to attract public attention to overdiagnosis of autism, AD/HD, and other behavioral disorders. Okay, then let us focus on science-based diagnosis, whether health care professionals actually practice using evidence-based diagnostic guidelines, and the consequences of persons mildly challenged with some symptoms of these disorders. That is a legitimate and important discussion. But why demean individuals, children, and their families with loaded words such as “fraud,” “racket,” and “brats.” This causes tremendous pain. Mr. Duke actually defended Mr. Savage’s attack on the existence of autism by stating, “It seems as if taking offense is the recreation of choice in modern America.” A radio host declares that autism and AD/HD don’t exist, they are frauds, they are caused by lax parenting because “they don’t have a father around to tell them, ‘don’t act like a moron. You’ll get nowhere in life.’” And then they complain because those of us living with family members who have disabilities take exception. This is an interesting logic. Who is the heartless and insensitive party in this? Mr. Duke then quickly declares that this is all caused by “an irresponsible psychiatric community” and “trigger-happy diagnosticians” whose “most egregious example of their handiwork is ADHD, a mythical condition that has become a handy excuse for bad behavior.”
We need to focus on the published evidence of science. We need uniformity in professional diagnosis, adhering to evidence-based guidelines. When Lawrence Diller, MD, states that many families come to him because their children have mild symptoms of AD/HD and want an edge up in school, let us discuss severity in daily functioning and significant failure to meet the daily expectations of life. But don’t call us “frauds” and don’t call our children “brats.” Whatever happened to the notion of Christian charity in our society—of putting ourselves in the shoes of others and having empathy?
CHADD will continue to work with the professional community in enhancing the science behind disability. CHADD will continue to convene persons with disorders and their families to exchange life experiences and provide mutual support. Some of us will continue to speak out against ignorance whose purpose is to harm.
Stay strong as you deal with challenges of daily life. Seek out support.
Clarke
CHADD has worked this week with potential legislative sponsors on a renewal of U. S. Senate recognition in September of AD/HD Awareness Day. This coming Saturday, I speak to the National Medical Association’s section on psychiatry and behavioral science on public attitudes and AD/HD and special education placement issues. Last Saturday, CHADD conducted a public forum targeted to the African-American community in Prince George’s County, Maryland, where community attitudes were discussed. And we have radio talk show host Michael Savage and his colleague Selwyn Duke making declarations this week about the “fraud” of autism, added to their previous declarations about the “fraud” of AD/HD, and the reaction of family members to these declarations.
Family support groups, such as CHADD, have a mission to increase awareness of these disorders to foster a greater level of acceptance and understanding of the very real and significant challenges individuals with disorders and their families face. Growing up and living with substantial disabilities in daily life are emotionally, physically, and financially draining. My family is so fortunate to have supportive extended family, caring community of faith, financial and health insurance resources, and informed communities and networks. With all of this, it is still difficult to deal with our challenges, expectations, emotions, and pain. Negative, hostile, antagonistic public attitudes from some individuals don’t help.
We are all aware of the organized groups that deny the existence of mental disorders and declare that these disorders are fraud. But others in society who are not apparently connected with these organized anti-psychiatry groups foster this notion that AD/HD, autism, and other behavioral challenges are “willful” actions by “brats” with inadequate parental direction. My son’s 17 years of difficulty are not willful; he is a delightful and kind person, and he has loving, supportive parents and family.
Just after the last presidential election, Armstrong Williams declared: “There is no scientific basis for the diagnosis of AD/HD. If a child is bored, distracted, and or boisterous in the classroom, he is often believed to be suffering from AD/HD, or to say, childhood.”
This week, Michael Savage declared that autism is a “fraud” and a “racket”, adding that “in 99% of the cases, it’s a brat who hasn’t been told to cut the act out.”
Part of me says let’s just ignore such ignorance and get on with helping our family member grow, develop, and live as normally as possible. Let us work with the professional community and fellow families to build supports. But a mission of CHADD is to rely on our professional advisory board to share the published scientific evidence to counter the spread of misinformation. So part of me says prepare a blog on this subject.
To defend themselves against the public outrage from autism groups across America, from advertisers pulling their financial support of his program, and from radio networks discontinuing sponsorship of his program, Michael Savage and his supporters say that they are just trying to attract public attention to overdiagnosis of autism, AD/HD, and other behavioral disorders. Okay, then let us focus on science-based diagnosis, whether health care professionals actually practice using evidence-based diagnostic guidelines, and the consequences of persons mildly challenged with some symptoms of these disorders. That is a legitimate and important discussion. But why demean individuals, children, and their families with loaded words such as “fraud,” “racket,” and “brats.” This causes tremendous pain. Mr. Duke actually defended Mr. Savage’s attack on the existence of autism by stating, “It seems as if taking offense is the recreation of choice in modern America.” A radio host declares that autism and AD/HD don’t exist, they are frauds, they are caused by lax parenting because “they don’t have a father around to tell them, ‘don’t act like a moron. You’ll get nowhere in life.’” And then they complain because those of us living with family members who have disabilities take exception. This is an interesting logic. Who is the heartless and insensitive party in this? Mr. Duke then quickly declares that this is all caused by “an irresponsible psychiatric community” and “trigger-happy diagnosticians” whose “most egregious example of their handiwork is ADHD, a mythical condition that has become a handy excuse for bad behavior.”
We need to focus on the published evidence of science. We need uniformity in professional diagnosis, adhering to evidence-based guidelines. When Lawrence Diller, MD, states that many families come to him because their children have mild symptoms of AD/HD and want an edge up in school, let us discuss severity in daily functioning and significant failure to meet the daily expectations of life. But don’t call us “frauds” and don’t call our children “brats.” Whatever happened to the notion of Christian charity in our society—of putting ourselves in the shoes of others and having empathy?
CHADD will continue to work with the professional community in enhancing the science behind disability. CHADD will continue to convene persons with disorders and their families to exchange life experiences and provide mutual support. Some of us will continue to speak out against ignorance whose purpose is to harm.
Stay strong as you deal with challenges of daily life. Seek out support.
Clarke
Thursday, July 17, 2008
Self-Direction and the Transition to Adulthood
My son Andrew enters his senior year in high school this September and turns 18 in October. People who don’t know us well ask, “What’s he going to do after high school?” Well, for now, we are focused on an academic graduation degree, which means he has to pass his state standardized exams. He is also enhancing his independent living skills, being introduced to possible job areas, and possibly earning his driver’s license. These are major goals for the coming ten months. Andrew’s life post-high school will be influenced by his success with these high school areas.
CHADD is recognized and financed by the Centers for Disease Control and Prevention (CDC) as the National Resource Center on AD/HD (NRC). On July 16, we produced our quarterly free electronic newsletter, “NRC News,” and this one focused on “The Next Step—From School to the Workplace.” The newsletter is posted on the NRC Web site. The newsletter makes two significant points that we can affirm in our family:
• “Transitioning from the world of school to the world of work can be a trying time.”
• “Preparing for the transition from school to work is a long term process that starts while you are in high school.”
This summer, for six weeks, Andrew is enrolled in a high school program where for a few hours each morning they focus on the standardized state education exam material. Each afternoon they are assigned to job sites to be exposed to job skills and demands, in order to determine where they have interests and abilities. They live in a group house to enhance their independence and social skills, and they get lots of off-campus trips. For example, there are two minor league baseball clubs near campus, and my baseball-fan son loves going to the game to end a day.
The University of Pennsylvania Collaborative on Community Integration for persons with serious mental illness, with funding from the National Institute on Disability and Rehabilitation Research, and in collaboration with the Bazelon Center on Mental Health Law, has just published In The Driver’s Seat: A Guide to Self-Directed Mental Health Care. This is a 40-page guide to help adult clients of the nation’s public mental health system design and help implement their own plans of support. The report contains principles and approaches that should assist all persons with disabilities coping with independence.
A “self-directed” care plan concentrates on “recovery” and builds on an individual’s strengths and skills. With the help of facilitators, participants in self-directed care programs develop life/recovery plans that identify their personal goals, identify the barriers to their achieving these goals, and outline the steps and resources needed to implement the plans. Public mental health programs in Florida, Iowa, Michigan, and Oregon are implementing self-directed plan programs and the guide reviews these and other similar public programs.
The guide briefly discusses the question of an individual’s “capacity” to participate in self-directed care at any given time. This is a complex question, frequently made more complex by an individual’s anxiety, low self-esteem and low self-expectations, and sometimes a sense of helplessness. These challenges can be overcome.
Andrew, his parents, and an estate attorney specializing in disability issues now are discussing not only estate issues, but issues of targeted and focused power of attorney. We are trying to collectively identify areas in which Andrew will probably need some support and backup when he turns the magic age of 18, and we hope to create a system to have in place if a crisis hits. “This ain’t easy,” but it is important to discuss as we transition to the next stage in Andrew’s life.
For two years I have been thinking off and on about how the mental health concept of “recovery,” the fundamental principle in reforming the nation’s mental health system, applies to AD/HD and to my son with special needs. See my May 6 blog, “Recovery, Hope, and Self-Esteem” for my initial personal thoughts. A lot more thinking, research and personal experience need to enlighten this topic.
Good luck as you and your family work through these difficult transitions.
Clarke
CHADD is recognized and financed by the Centers for Disease Control and Prevention (CDC) as the National Resource Center on AD/HD (NRC). On July 16, we produced our quarterly free electronic newsletter, “NRC News,” and this one focused on “The Next Step—From School to the Workplace.” The newsletter is posted on the NRC Web site. The newsletter makes two significant points that we can affirm in our family:
• “Transitioning from the world of school to the world of work can be a trying time.”
• “Preparing for the transition from school to work is a long term process that starts while you are in high school.”
This summer, for six weeks, Andrew is enrolled in a high school program where for a few hours each morning they focus on the standardized state education exam material. Each afternoon they are assigned to job sites to be exposed to job skills and demands, in order to determine where they have interests and abilities. They live in a group house to enhance their independence and social skills, and they get lots of off-campus trips. For example, there are two minor league baseball clubs near campus, and my baseball-fan son loves going to the game to end a day.
The University of Pennsylvania Collaborative on Community Integration for persons with serious mental illness, with funding from the National Institute on Disability and Rehabilitation Research, and in collaboration with the Bazelon Center on Mental Health Law, has just published In The Driver’s Seat: A Guide to Self-Directed Mental Health Care. This is a 40-page guide to help adult clients of the nation’s public mental health system design and help implement their own plans of support. The report contains principles and approaches that should assist all persons with disabilities coping with independence.
A “self-directed” care plan concentrates on “recovery” and builds on an individual’s strengths and skills. With the help of facilitators, participants in self-directed care programs develop life/recovery plans that identify their personal goals, identify the barriers to their achieving these goals, and outline the steps and resources needed to implement the plans. Public mental health programs in Florida, Iowa, Michigan, and Oregon are implementing self-directed plan programs and the guide reviews these and other similar public programs.
The guide briefly discusses the question of an individual’s “capacity” to participate in self-directed care at any given time. This is a complex question, frequently made more complex by an individual’s anxiety, low self-esteem and low self-expectations, and sometimes a sense of helplessness. These challenges can be overcome.
Andrew, his parents, and an estate attorney specializing in disability issues now are discussing not only estate issues, but issues of targeted and focused power of attorney. We are trying to collectively identify areas in which Andrew will probably need some support and backup when he turns the magic age of 18, and we hope to create a system to have in place if a crisis hits. “This ain’t easy,” but it is important to discuss as we transition to the next stage in Andrew’s life.
For two years I have been thinking off and on about how the mental health concept of “recovery,” the fundamental principle in reforming the nation’s mental health system, applies to AD/HD and to my son with special needs. See my May 6 blog, “Recovery, Hope, and Self-Esteem” for my initial personal thoughts. A lot more thinking, research and personal experience need to enlighten this topic.
Good luck as you and your family work through these difficult transitions.
Clarke
Wednesday, July 2, 2008
When Experts Disagree
by Marie S. Paxson
If you’ve been following CHADD’s recent blog entries, you are aware of the recent attention paid to the American Heart Association’s recommendation that children and adolescents using medication to treat AD/HD should consider getting an EKG to rule out a rare but serious heart defect. Others in the medical field felt that this recommendation was too assertive and that a physical exam and detailed medical history would suffice. Both sides of the issue agree that a registry should be set up so that there is firm data on exactly how many people are affected when AD/HD medication is used by those with an undiagnosed heart defect.
So as an individual or family member affected by AD/HD where does this leave you? (spoiler alert - I have no answers to this question). The standard advice is to check with your physician. But will he/she know? What is his/her background and training for patients with AD/HD? The answer may vary, but most likely they received significant training on heart function, so that is reassuring.
By now, you have probably experienced other times in your life when experts disagreed. In my family of four, for example, at one time we had two psychologists, a psychiatrist, a pediatrician, and a family doctor helping us with AD/HD-related issues. It didn’t happen often, but there were times when these trusted individuals weren’t on the same page about how to address some of our family’s issues.(Let’s face it, five people can’t agree on pizza toppings, let alone something this complex). Sometimes I could tell by their body language that they weren’t onboard with the other team members, other times they flat-out told us they didn’t see the value in following the other expert’s recommendation.
But I recall the words of my psychologist: “Marie, your family is not a do-it-yourself project!” and she encouraged me to assemble a supportive, knowledgeable team to help with this journey into the unknown. I have to admit my first thoughts upon hearing this were “We can’t be that bad, can we?” But then I realized that no one would have THIS many professionals on her speed-dial if things were going smoothly.
I guess it is a fact of life that those whose opinions we value won’t always agree with each other. So here is what I do when this situation causes confusion for me. I ask myself some questions: will anything negative happen if I take the time to sort things out for a bit? Sometimes new information and facts surface and that will help me make a better decision. Am I catastrophizing – are my concerns reasonable or am I projecting future doom? I learned to catastrophize after so many things went WRONG. Now at least, I recognize when I’m in that zone. Is there any partial action I could take that might be helpful? Is one piece of advice easier to follow than the others? I check with others who are going through a similar situation to get their opinions. And lastly, is anything about this keeping me awake at night? If so, that is what I address quickly.
While professionals will disagree, one question you should ask any physician you are considering – are you familiar with and do you practice the AD/HD evidence-based guidelines published by the American Academy of Pediatrics and American Academy of Child and Adolescent Psychiatry? At least you can determine their initial understanding of the diagnosis and treatment standards within the medical profession.
Looking for physician guidelines on the treatment of adult AD/HD? (The American Heart Association EKG recommendation pertains to children and teens.) Stay tuned—CHADD’s Professional Advisory Board will be reviewing current guidelines and we will have more information on this in the future.
Marie S. Paxson
Marie S. Paxson is the president of CHADD.
Thursday, June 19, 2008
Tips for Surviving a World Filled with (Mis)information: Part II
It’s Friday, 5:15 PM. As the CHADD staff is preparing for the weekend, a call comes in from a reporter seeking comment on an embargoed press release that will be widely disseminated on Monday. How should CHADD respond?
This scenario is more than hypothetical. This really happened several weeks ago, when the American Heart Association released a statement urging that children undergo full cardiovascular monitoring, including EKGs, before being treated with medication for AD/HD.
How would you have responded? Would you have quickly taken the most cautious stance and provided the best information you had available at the time? Would you have stepped back and not responded, thereby running the risk that other people or (anti-mental health) groups would monopolize the coverage and provide completely inaccurate information?
These decisions are never easy, and CHADD always takes its public statements seriously. In this particular case, we came out with the most cautious statement possible based on the limited information we had on the topic at the time. We said the AHA position would make an already safe process even safer. But as many experts began weighing in with analysis, based on the scientific findings, many of them concluded that the AHA’s recommendation was perhaps overreaching and not completely cost-effective.
Even the AHA scaled back to some degree on its position by working with the American Academy of Pediatrics on an erratum and media advisory. The AAP developed its own statement that ran counter to the original AHA statement. At CHADD, we’re working with our professional advisory board to develop a position on the issue, and there continue to be many people in the field with varying opinions on the topic.
This is the nature of the beast we deal with. Given the demand of the news media’s deadlines, CHADD leadership often has to act quickly, releasing the best science-based information that is available about a given topic when the media call. But sometimes, as more information and expert analysis come in, it is necessary for us to change (hopefully ever so slightly) our position. We realize this can be frustrating and confusing to you and others, but it is necessary.
It is important to remember that when it comes to many of the issues we deal with in this arena, information is seldom static. Typically, positions and statements do evolve over time as more information comes in. You may have noticed that there are some people in the news, many of whom have anti-mental health care agendas, who are very quick to draw definite and sweeping conclusions about new research. CHADD, on the other hand, is very careful to release statements that are nuanced and cautious about drawing certain conclusions. This is because we understand that the interpretation of research can change when it’s placed in its proper context. We also know that, as additional research on the topic is conducted, we get a fuller picture. As Abraham Lincoln once said, “Yes, you’re right, I have changed my position. I’d like to think I am smarter today than I was yesterday.”
We rely on our professional advisory board consensus interpretation of the published science. Sometimes the published science is stable for a period of time, but many of the media explosions are interpretations of a new study of science—with little to no context or history—just a headline beginning “Study Declares.” CHADD’s soundest statements are our What We Know papers, developed over time by the consensus of our professional advisory board, considering the entire body of published science (see the Web site of CHADD's National Resource Center on AD/HD). As CEO, responsible for accurate interpretation of the published science, and as a father of a son with special needs, I get annoyed by this media need for an immediate "headline of controversy" rather than a more thoughtful analysis of what the research actually means. But media headlines dominate our daily lives.
When the follow-up to the Multimodal Treatment Study on Children with AD/HD was released several months ago, there were media reports saying the study proved that medication loses its effectiveness. Yet, many members of the media failed to explain that people taking part in this longitudinal study were no longer receiving the kind of care that they received at the beginning of the study. The intensity of treatment had changed for many of the people who had been on medication. In some cases, some people had gone off of their medications, while others, who had not been on medications when the study began, started taking them. The public did not receive a full explanation of the study's follow-up findings; instead it was treated to a simplistic interpretation of them. These issues were clarified in the April 2008 issue of CHADD's Attention magazine.
The takeaway from all of this is that it’s important for you, as a news consumer, to hold off on drawing conclusions just because you’ve received some information from the media or even a reputable organization. Continue to visit reputable sites to see how these stories are evolving. If you have concerns about how the stories will impact you or your children, then we encourage you to talk with your health care provider.
But, most of all, it is important to us that you understand why CHADD at times expounds upon an issue, and at other times shies away from speaking in absolute terms and in sound bites. We're disseminating information that is accurate and we're waiting for the best research to inform our efforts. Keep visiting the Web sites of CHADD and the National Resource Center on AD/HD. We're constantly producing information on relevant topics in the news.
May you have the best of luck and all the best resources the next time you're trying to get to the bottom of a story about AD/HD!
Clarke
This scenario is more than hypothetical. This really happened several weeks ago, when the American Heart Association released a statement urging that children undergo full cardiovascular monitoring, including EKGs, before being treated with medication for AD/HD.
How would you have responded? Would you have quickly taken the most cautious stance and provided the best information you had available at the time? Would you have stepped back and not responded, thereby running the risk that other people or (anti-mental health) groups would monopolize the coverage and provide completely inaccurate information?
These decisions are never easy, and CHADD always takes its public statements seriously. In this particular case, we came out with the most cautious statement possible based on the limited information we had on the topic at the time. We said the AHA position would make an already safe process even safer. But as many experts began weighing in with analysis, based on the scientific findings, many of them concluded that the AHA’s recommendation was perhaps overreaching and not completely cost-effective.
Even the AHA scaled back to some degree on its position by working with the American Academy of Pediatrics on an erratum and media advisory. The AAP developed its own statement that ran counter to the original AHA statement. At CHADD, we’re working with our professional advisory board to develop a position on the issue, and there continue to be many people in the field with varying opinions on the topic.
This is the nature of the beast we deal with. Given the demand of the news media’s deadlines, CHADD leadership often has to act quickly, releasing the best science-based information that is available about a given topic when the media call. But sometimes, as more information and expert analysis come in, it is necessary for us to change (hopefully ever so slightly) our position. We realize this can be frustrating and confusing to you and others, but it is necessary.
It is important to remember that when it comes to many of the issues we deal with in this arena, information is seldom static. Typically, positions and statements do evolve over time as more information comes in. You may have noticed that there are some people in the news, many of whom have anti-mental health care agendas, who are very quick to draw definite and sweeping conclusions about new research. CHADD, on the other hand, is very careful to release statements that are nuanced and cautious about drawing certain conclusions. This is because we understand that the interpretation of research can change when it’s placed in its proper context. We also know that, as additional research on the topic is conducted, we get a fuller picture. As Abraham Lincoln once said, “Yes, you’re right, I have changed my position. I’d like to think I am smarter today than I was yesterday.”
We rely on our professional advisory board consensus interpretation of the published science. Sometimes the published science is stable for a period of time, but many of the media explosions are interpretations of a new study of science—with little to no context or history—just a headline beginning “Study Declares.” CHADD’s soundest statements are our What We Know papers, developed over time by the consensus of our professional advisory board, considering the entire body of published science (see the Web site of CHADD's National Resource Center on AD/HD). As CEO, responsible for accurate interpretation of the published science, and as a father of a son with special needs, I get annoyed by this media need for an immediate "headline of controversy" rather than a more thoughtful analysis of what the research actually means. But media headlines dominate our daily lives.
When the follow-up to the Multimodal Treatment Study on Children with AD/HD was released several months ago, there were media reports saying the study proved that medication loses its effectiveness. Yet, many members of the media failed to explain that people taking part in this longitudinal study were no longer receiving the kind of care that they received at the beginning of the study. The intensity of treatment had changed for many of the people who had been on medication. In some cases, some people had gone off of their medications, while others, who had not been on medications when the study began, started taking them. The public did not receive a full explanation of the study's follow-up findings; instead it was treated to a simplistic interpretation of them. These issues were clarified in the April 2008 issue of CHADD's Attention magazine.
The takeaway from all of this is that it’s important for you, as a news consumer, to hold off on drawing conclusions just because you’ve received some information from the media or even a reputable organization. Continue to visit reputable sites to see how these stories are evolving. If you have concerns about how the stories will impact you or your children, then we encourage you to talk with your health care provider.
But, most of all, it is important to us that you understand why CHADD at times expounds upon an issue, and at other times shies away from speaking in absolute terms and in sound bites. We're disseminating information that is accurate and we're waiting for the best research to inform our efforts. Keep visiting the Web sites of CHADD and the National Resource Center on AD/HD. We're constantly producing information on relevant topics in the news.
May you have the best of luck and all the best resources the next time you're trying to get to the bottom of a story about AD/HD!
Clarke
Thursday, June 12, 2008
A World Filled with (Mis)Information
Recently a Web site promoting natural health alternatives and healthful foods posted an article questioning the safety of medications used to treat attention-deficit/hyperactivity disorder. The article made unsubstantiated claims based on flawed interpretations of various scientific data.
Among its many false assertions, the article used a recent brain study to claim that stimulant medications actually stunt the growth of children’s brains. That is despite the fact that not one person in peer-reviewed, published science, including the researcher himself, has made that deduction based on the research findings.
The research cited showed that there were children with AD/HD who experienced a delay in brain maturation when compared to those without the disorder. The takeaway—and one always has to be careful with takeaways based on just one study—was that delay in brain growth is a product of the disorder, not caused by its treatment.
The article also claimed that a recent follow-up to the landmark Multimodal Treatment Study of Children with AD/HD (MTA) concluded that medication loses its effectiveness after a period of time. Yet, according to the lead researchers on the MTA, this was not necessarily the conclusion from the follow-up study’s findings. The study did affirm the need for continuous supports and interventions for treatment success to be maintained.
Because I value you as a reader, I will not continue to burden you with the unscientific misinformation that was presented in this article. The bottom line is that this author has a viewpoint to sell. He advocates diet elimination and supplementation plans as a way to treat AD/HD. But the scientific research that has been conducted in this area has found no evidence that eliminating foods from or adding supplements to one’s diet makes any difference in the treatment of AD/HD, a neurobiological disorder. Research has demonstrated the potential value of Omega 3 fatty acids, whether in your diet or with supplements.
Research has shown that a combination of education adaptations, parent training, behavioral intervention strategies, education about the disorder, and medication are the most effective ways to treat the disorder. There is no denying the importance of diet and exercise in maintaining a healthy lifestyle. But there is no evidence, at least so far, that diet makes any difference in treating AD/HD.
I plan to dedicate the next couple of blog entries to explaining how we can all become more discerning in evaluating the information we receive. I also plan to discuss the role CHADD plays in disseminating accurate and science-based information. We will discuss the media’s constant need for a new headline, and how this frequently leads to more misinformation. I hope you will continue reading.
Clarke
Among its many false assertions, the article used a recent brain study to claim that stimulant medications actually stunt the growth of children’s brains. That is despite the fact that not one person in peer-reviewed, published science, including the researcher himself, has made that deduction based on the research findings.
The research cited showed that there were children with AD/HD who experienced a delay in brain maturation when compared to those without the disorder. The takeaway—and one always has to be careful with takeaways based on just one study—was that delay in brain growth is a product of the disorder, not caused by its treatment.
The article also claimed that a recent follow-up to the landmark Multimodal Treatment Study of Children with AD/HD (MTA) concluded that medication loses its effectiveness after a period of time. Yet, according to the lead researchers on the MTA, this was not necessarily the conclusion from the follow-up study’s findings. The study did affirm the need for continuous supports and interventions for treatment success to be maintained.
Because I value you as a reader, I will not continue to burden you with the unscientific misinformation that was presented in this article. The bottom line is that this author has a viewpoint to sell. He advocates diet elimination and supplementation plans as a way to treat AD/HD. But the scientific research that has been conducted in this area has found no evidence that eliminating foods from or adding supplements to one’s diet makes any difference in the treatment of AD/HD, a neurobiological disorder. Research has demonstrated the potential value of Omega 3 fatty acids, whether in your diet or with supplements.
Research has shown that a combination of education adaptations, parent training, behavioral intervention strategies, education about the disorder, and medication are the most effective ways to treat the disorder. There is no denying the importance of diet and exercise in maintaining a healthy lifestyle. But there is no evidence, at least so far, that diet makes any difference in treating AD/HD.
I plan to dedicate the next couple of blog entries to explaining how we can all become more discerning in evaluating the information we receive. I also plan to discuss the role CHADD plays in disseminating accurate and science-based information. We will discuss the media’s constant need for a new headline, and how this frequently leads to more misinformation. I hope you will continue reading.
Clarke
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