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.


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.


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.