Monday, February 25, 2013

Preventing Harm on All Fronts

Guest blog by Ann Abramowitz, PhD, and Theresa E. Laurie Maitland, PhD

The tragic story of Richard Fee, as told by New York Times reporter Alan Schwarz, is one of the most disturbing pieces either of us has ever read. As the chair and co-chair, respectively, of CHADD’s Professional Advisory Board, we decided to share our own thoughts with the hope that we may enrich the discussion and help to prevent similar tragedies in the future.

First, a word about CHADD’s PAB: We are a group of professionals, mostly in academic settings, who also work clinically with children, teens, and adults with ADHD. Our task is to provide CHADD with scientific guidance, so that the information provided to the public is scientifically accurate and up-to-date. One of us is a clinical psychologist and full-time faculty member at a university, involved in the training of both clinical psychologists and child and adolescent psychiatrists, and also with a clinical practice. The other is an ADHD/LD specialist and coach who coordinates a university program for college students with ADHD and/or LD. The article describing Richard Fee’s situation left us with a number of questions and reactions.

The first question we had was whether Richard had ADHD. The article strongly suggests that he did not, based on his parents’ conviction that he had not had symptoms until after college, and we have to speculate whether the difficulty concentrating that arose at that time was more likely attributable to some other disorder. One of us is a psychologist, and the other is an educator. We are not physicians and cannot prescribe medication, but all professionals who work with people with ADHD should have knowledge of all evidence-based treatments for ADHD, including medication. It is well known that very rarely psychotic symptoms are triggered by stimulant medication, and it is also well known that stimulant medication must be avoided in individuals who present with psychotic symptoms. Careful assessment and diagnosis are crucial.

As Dr. Keith Conners explains in the New York Times article, the practice standards for the diagnosis of ADHD in adults call for corroborative evidence, and go far beyond the completion of self-report symptom checklists. If a clinician (psychiatrist, psychologist, or other health professional) relies only on self-report, the likelihood of misdiagnosis is significant. One reason is that it would be relatively easy to report having the symptoms of ADHD in order to obtain medication; a second reason is that the individual may have serious psychopathology, yet might lack insight into that fact. But even corroborative reports of symptoms by others are not sufficient evidence upon which to base a diagnosis; the history given by the parents, provided in school records, and the completion of psychological testing all enable the clinician to achieve the essential understanding for making an accurate diagnosis. ADHD does not first appear in adulthood. Misdiagnosing another mental disorder as ADHD can be catastrophic, particularly if psychosis is involved.

How can it be that a careful history may not always be done? We don’t know what happened in Richard’s case, but if the diagnosis was made based only on self-report this would be completely inconsistent with practice standards. Unfortunately, there may still be professionals who diagnose adults, including college students, without completing a careful history and conducting a comprehensive assessment to rule out other co-existing conditions. As the tragic story of Richard Fee demonstrates, this must change.

Let’s speculate that Richard refused to allow his parents to be involved. Perhaps he also refused to allow current corroborative report, such as instructors, roommates, or employers. How does a clinician conducting an evaluation of a young adult obtain the background information and current corroborative information while respecting his or her wishes and privacy? The answer, while never simple, must rest on this simple truth: Self-report of symptoms cannot be considered sufficient. By requiring new patients to provide corroborative information, clinicians may reduce the possibility of diagnosing individuals who are seeking to obtain stimulants or who may have other serious conditions. Our experiences working extensively with young adults, including many college students, suggest that it is important to help them understand why this is needed. We believe that working together with a caring clinician, those with ADHD find ways to obtain the information that is needed to reach a careful and accurate diagnosis. This often happens as trust builds, and as the young adult recognizes, and is grateful for, how much care and time are going into the evaluation.

A final, wrenching question nags at the reader: How can it be that the parents, describing their son’s severe psychopathology and Adderall abuse to the prescribing psychiatrists, went unheard? Even acknowledging the requirements of HIPAA, we cannot find an answer. The lack of involvement of families in the treatment of mental illness is a serious problem that professionals must grapple with, not just those specializing in ADHD. When working with young adults who are still dependent upon their parents for their livelihood and care, professionals need to create respectful methods for protecting the young adult’s confidentiality while designing ways to integrate in the input of family members and significant others. Given the potential lack of self-awareness in individuals with ADHD, it is essential to elicit feedback from others who may have more accurate observations and may also need help in learning about their loved one’s condition. Hopefully, we will learn from this tragedy as well as others that even given the boundaries of HIPAA there are ways to obtain information that is crucial for accurate diagnosis and appropriate treatment, and that harm can be done when this does not occur.

Yet, in our work with college students, we also cannot deny that stimulant abuse/misuse is a real problem on college campuses. This tragic story brings this situation to light. Hopefully, this article will be a wake-up call for professionals who are not following the standards for diagnosis of young adults with ADHD. The pressures for success and competition at college may drive some to seek medication to quickly improve their performance rather than choose the much slower process of changing their behavior and study habits.

The reality of stimulant abuse/misuse and the media’s continual focus on situations like Richard Fee’s can spawn other tragedies. The self-perception of many young adults who have or suspect they have ADHD can be adversely impacted. Painful stories like these can add to the misunderstanding and misinformation on ADHD that makes many of them reluctant to use medication or seek help. Although there are obviously young adults who feign ADHD symptoms just to get the medication, people working in campus learning centers may not ever meet them. Since these programs do not offer a quick fix, but offer ongoing help in learning to accept ADHD and learning how to live life productively with it, professionals tend to meet students who wait until they have “hit bottom” and are humiliated, devastated, and feeling as if they have “lost their smarts.” At this low point they are finally willing to find more effective ways of living with the chaos and challenges created by ADHD.

Many times young adults are not seeking help or not using prescribed medication because they report wanting to be “normal” and view help seeking negatively. They have adopted the beliefs from society that they “should” be able to control their attention on their own and that ADHD is not real. Yet they discover, with great trepidation, that they cannot seem to control their attention or behavior. When talking about the issue of students who may be feigning ADHD just to get medication, one student said, “I just don’t get it, who would want to fake having a life like mine?” Although stories abound about students whose lives were dramatically improved by Adderall or other medications, these are not typically covered in the media because they lack the sensationalism that the tragic stories have. There are thousands of young adults who truly have ADHD and use medication responsibly, and the media focus on those who were incorrectly diagnosed or treated can tragically undermine their confidence and hinder their decision to seek help.

Ann Abramowitz, PhD, is a professor in the department of psychology at Emory University and supervises residents in the division of child and adolescent psychiatry at the university's medical school. Theresa E. Laurie Maitland, PhD, is the coordinator of the Academic Success Program for Students with LD and ADHD at the University of North Carolina at Chapel Hill.
Visit CHADD's web page on Medication Abuse and Diversion.


Unknown said...

I am so sorry for this family and their loss. I can't even imagine!

I think what people have to realize is that ADHD or ADD is not a curse. However, it is something you need to learn to live with.

My daughter had the same symptoms- straight A's, never had to study, horrible procrastinator and more. After being bullied almost all of her elementary school years she didn't have friends.

Beautiful talented and yet SO depressed. The summer she was entering middle school I spent a ton of time with her and educated myself on ADHD and ADD.

I had been diagnosed at 40 with ADHD and it all made perfect sense. Younger daughter had a severe clinical case of ADHD.It was definitely in the genes.

But, my older daughter was the opposite of us. She was unmotivated, tired all of the time, only productive with a dead line etc... I realized she had all of my same struggles, but she was not active at all. She did not have the hyper component.

We went through complete psychological testing and it was ADD along with depression and anxiety- which usually go together in girls.

Currently, we are both on Adderall and it has changed our lives. It has balanced things out. It does not keep us up for days and we do not crash. WHY?
because if you have the right dose it is a very effective medication.

Had I known all of this at age 14 instead of 40 my whole life would have been different. Why did it take so long to diagnose? Because the stress I was under just tipped those scales and I could no longer function. You can only live so long on pure adrenaline!

I am so grateful I have been treated. It made me more aware and a much better mom which is why I could see what my daughter was struggling with.

The biggest thing I always stress is that being treated is SO much more than medication! It is acceptance and education. Learning coping skills, recognizing how you learn and study. Most importantly putting systems in place that assist in managing time and tasks.

There is no simple answer. Everyone has a different experience. Thanks for letting me share mine.

Anonymous said...

These tragedies are senseless. So much more could be done to offer support. Attacking someone's character or questioning a legitimate diagnosis is hurtful and makes the struggling families situations so much worse.

My concern is that there's not enough information concerning women and ADHD. They are typically diagnosed later in life or at the time one of their children is diagnosed. They have a tendency to present symptoms differently than their male counterparts. More training and accurate information needs to be disseminated to the media, public at large and physicians.

Please consider writing to your elected officials when asked to do so and let them know the importance of continued funding for the National Ressource Center. Let people know that this information is helpful and a comforting life line for families dealing with ADHD. Thanks.

Pam Nicodemus, MS RN CNS said...

Pam Nicodemus, MS RN CNS

Wrll stated!! You eloquently describe the complexity surrounding AD/HD diagnosis and remind publishers, parents, and professionals of their responsibilities. Hope you are considering submitting this to NYT.

IE said...

Another open question is why didn't these doctors prescribe the slow release version of the medication. It is both more effective and less addictive.

My guess is this: doctors simply don't know enough about ADHD and the latest treatment options. They prescribe what the know. I feel a lot would be accomplished by doctors being better educated about ADHD, especially about Adult ADHD.

Anonymous said...

The slow release forms of medication are significantly more expensive. If you have a high deductible like we do, it can be very costly.