Are We Afraid of Treating Adult ADHD?
75% of Adults with ADHD never receive an accurate diagnosis
Posted Mar 31, 2013
I sometimes wonder if the treatment of ADD/ADHD didn’t involve stimulants if there would there be such a fear of diagnosing Adult ADD/ADHD. Effective screening and treatment for Adult ADD/ADHD is essential to provide the highest level of care to your clients.
Many people question whether or not Adult ADHD exists as a legitimate diagnosis. Indeed, many claim that ADD is over diagnosed and that stimulants are overprescribed. Psychiatrists are afraid of becoming one of these doctors who “overprescribe”. Despite the fact that stimulants are the standard of treatment for Adult ADD, whether or not someone has ADD should not hinge on the treatment, but instead on the proper assessment and diagnosis.
Are some people misdiagnosed as having ADD but in fact have another condition? Sure. And many people, notoriously college students, use stimulants to improve their performance or energy. However, more often than not, Adult ADD is under-diagnosed and under-treated. Adult ADD affects at least 5% of the population and it is estimated that nearly 75% of Adults with ADD never receive an accurate diagnosis or effective treatment. An estimated 3 percent to 5 percent of U.S. adults have ADHD, but only 15 percent are aware they have the disorder, according to Rafael Klorman, a professor of psychology and director of clinical training at the University of Rochester in New York and one of the briefing's speakers. (Steven Reinberg, Healthday, Internet, Sept 9)
Dr. David L. Katz, the director of the Prevention Research Center at Yale University's Schools of Public Health and Medicine, said, "Available data indicate we are concomitantly under-diagnosing and over-diagnosing ADHD, under- and over-treating it."
Costs of Missing the Diagnosis
ADD causes significant lifelong impairment in those it affects. Left untreated, it affects financial status, educational achievements, relationships and even health.
"Overall, people with ADHD have less annual income," Biederman said. "This was true for males and females. Those with ADHD had income approximately $10,791 lower per year among high school graduates, and about $4,334 lower for college graduates than their counterparts without ADHD."
The estimated yearly income loss for adults with ADHD in the United States is $77 billion, Biederman said. The numbers for drug abuse are $58 billion, for alcohol abuse $85 billion, and depression $43 billion, he said. "You can see that ADHD is one of the costliest medical conditions we have," he said.
I have seen hundreds of patients over the years who have suffered for decades with ADHD. Some of them have may have suspected that something wasn’t quite right or that school and life was more difficult for them than their peers. When they start to learn more about ADHD, realize that their challenges are due to ADHD and discover that there are effective treatments, they are often left wondering why their teachers, parents, and previous therapists or psychiatrists didn’t pick up on the ADHD
For example, the other day, I saw a 26 year-old* who had been referred by his law school advisor for anxiety and depression.
This client never suspected that he had ADHD. He had performed well in high school and college and had even been accepted into a leading law school. However, it wasn’t done without a huge price to pay. He was extremely anxious and fearful of failing. Hence, he would spend an inordinate number of hours studying, worrying and preparing. Other therapists and psychiatrists had diagnosed him with depression, OCD, or generalized anxiety disorder and attempting to treat his symptoms with antidepressants and benzodiazepines. These medications would make him feel depressed, lethargic, and foggy.
As I explored his history, he told me that he was always well behaved as a child but would often daydream in class. He had difficulty socializing with his peers and felt like “the other kids were playing by rules that he was never taught”. People often call him space cadet, and his parents had him tested several times for his hearing because he seemed not to listen. He was always losing his school supplies and had a messy desk and room. He did not do well in elementary school and his parents often yelled at him about his poor grades and not doing his homework. They hired tutors for him and set a very rigorous and regimented schedule of studying that continued throughout junior high and high school. He started earning good grades and was proud of his performance, but he still couldn’t understand why it seemed to take him 2-3 times more time to do his work than it took his peers.
He often had difficulty going to sleep at a regular hour and waking on time was nearly impossible. He was chronically a few minutes late to school, which almost lead to his dismissal.
Since he was very forgetful, he took copious notes in class and would keep lists of all of his “to do” items. Since he kept so many to-do lists and reviewed information on a regular basis to “keep from forgetting”, one psychiatrist had diagnosed and treated him with OCD.
When he went off to college and struggled a without the rigid structure that his parents and school had imposed on him, he enlisted tutors to help him with his classes and went to the writing center for assistance. He didn’t have much time to participate in collegiate social life because he was constantly studying. Yet his grades were mediocre and he suffered from bouts of anxiety and depression.
He said that he always had difficulty organizing and with time management. He was chronically late to all of his classes and appointments saying “he just didn’t have a good sense of time”.
My client was determined to go to law school and had difficulty with application process and keeping up with all of the details. He did get accepted to a lower-ranked law school and decided to go. With the new demands of law school, his previous coping strategies were starting to fail. He was getting further behind when he was finally referred to me for an assessment.
As It turned out, he did not have depression, anxiety or OCD, but he had ADHD. Interestingly, he had a cousin, a brother, and an aunt who all had been diagnosed with ADHD and were on treatment. They all had had the hyperactive type of ADHD and also had alcohol abuse problems. His parents were shocked that their son had ADHD because he always seemed to be so well behaved and fastidious about his schoolwork.
In addition he related to me how he walked around in a fog most of the day and felt that he had cobwebs in his brain, the way that someone might when they first wake up in the morning or when they have the flu. However, this was how he had felt his entire life and assumed this was how other people also felt. He didn’t realize that some people are able to focus, concentrate and stay on task without the need to rely on an excessive amount of effort and anxiety.
I started him on Adderall. All of a sudden, a light bulb went off, the cobwebs cleared, and he saw the world the way that most people do. In addition, his anxiety greatly diminished and finally had the hope to pursue his passions and life goals. Did he continue to keep copious notes, make lists and experience some anxiety? Did he still have trouble with forgetfulness and organization? Absolutely. Medications are not a total cure. However, as he continued to use the coping strategies that had painfully served him throughout his life, he also worked with an ADHD coach to help prioritize, learn additional strategies, and develop realistic expectations. In addition, he worked with a therapist who addressed with him other sources of his anxiety and developed realistic goals and expectations, taking into account his strengths and weaknesses.
How do you diagnose Adult ADD/ADHD?
Adult ADD/ADHD is a clinical diagnosis made by a therapist, neuropsychologist, psychiatrist, or other health care provider. It is important that whoever makes the diagnosis has experience with Adult ADD/ADHD. Many clinicians were taught that if someone presents with depression and ADHD, first treat the depression THEN treat the ADHD. Very often, the patient relates feeling depressed and frustrated; often this is because he has experienced one failure after another or jumped from one job to the next. In our experience at The Hallowell Center, when you treat the ADHD, the client or patient develops the ability to achieve his or her goals, improve relationships, meet deadlines, remember to pick up the children, avoid accidents on the road, remember the passport before driving to the airport and generally feel more competent, confident and happy.
Unfortunately, when patients are treated for depression with antidepressants, or worse, treated with atypical antipsychotics for bipolar disorder and kept on these medications for months or years, their symptoms often do not improve and indeed may worsen. I have never actually seen this data in the professional literature, but during my training at Massachusetts General Hospital, I was taught a VERY important lesson. Never, never, never take away a patient's dopamine. Dopamine gives us zest for life, motivation, and enables us to pay attention. It is the piece of the puzzle people with ADHD may be missing that inhibits and often blocks them from their full potential. Antidepressants and antipsychotics, through a feedback loop, can decrease the function of dopamine in the frontal lobes and limbic system, exacerbating ADD symptoms.
In some instances, neuropsychiatric testing can be useful, especially when there is a suspicion of a learning disorder, such as dyslexia. However, testing is not always indicated nor is it always accurate. It is generally time consuming, very costly, and may miss the diagnosis. Testing may show that a person’s executive functioning, focus and distractibility are normal, but testing is performed over a short period of time. A key feature of adult ADD is that the symptoms are consistently inconsistent! The challenge that ADD presents is lack of sustained attention, focus and executive skills both throughout the day and over prolonged periods of time. Thus, one may function fairly well during neuropsychiatric testing over a brief period of time and with prompting from the tester, but may not be able to do this for extended periods of time. Neuropsychiatric testing is useful in complex cases or where the diagnosis is equivocal. However, it is important to recognize that someone may have clinical ADD even though testing was negative, much in the same way that someone may clinically have seizure disorder, despite a negative EEG.
How to Help Our Clients with Adult ADD/ADHD-Five Key Tips
1. Screen All Clients
So, how can we help our clients who have Adult ADD/ADHD? First, it is important to understand the impact that ADD/ADHD has on someone's life and that it is frequently misdiagnosed or under-diagnosed. It is important to understand that ADD/ADHD does exist and that the stigma of ADD/ADHD and the anxiety about using stimulants keeps people from getting diagnosed and treated.
It is important to screen all clients for Adult ADD/ADHD by using a simple five minute screening tool in the office or waiting room.
Here is a site that can be utilized as a screening tool:
Many of our clients also feel that Adult ADD/ADHD is not a "real diagnosis" and thus don't get evaluated or treated. However, by explaining to the patients that SPECT and PET scans show differential blood flow in the prefrontal cortex in ADHD patients versus non-ADHD patients can help reinforce to the patient that this is a real issue.
2. Refer For An Assessment and Treatment
With a client where there is a high suspicion of Adult ADD/ADHD, refer to a psychiatrist or psychologist who specializes in ADD/ADHD for assessment and treatment. Medications are a cornerstone of treatment and can be life changing for many patients who have been suffering for decades with an inaccurate diagnosis and without effective treatments.
Another cornerstone of treatment is developing specific strategies to address the specific challenges with the individual case.
“Cognitive behaviour therapy has been successfully applied to this client group even with minimal contact (Stevenson et al., 2002; Wilens et al., 1999). “Individuals with ADHD require structure in terms of personal organization, social boundaries, and practical help to cope with everyday problems” (Susan Young, 2007, pp 50)
By using CBT in session with your client, you can help them address their most important challenges. Often, these challenges include difficulties with time management, prioritizing, strategizing, planning, mood regulation, social skills, organization, focus and motivation.
It is very helpful to encourage your clients to purchase a weekly calendar and to use it on a regular basis instead of relying on post-it notes or on smart phone. Many ADHD patients do better when they see things visually.
Another behavioral intervention for your clients is to teach them to develop a to-do list with a way to prioritize each item. Then, have them place the items on a specific time on the calendar. More structure can facilitate better outcomes.
If you do not specialize in CBT or the client is having significant career challenges, hiring a coach to help the client overcome these specific challenges, develop strategies and increase accountability can help to increase success in work and personal life. Coaching can be an essential piece of treatment but it can be difficult to find an effective coach. Ideally, the coach should have extensive experience with working with clients who have Adult ADD/ADHD.
4. Address the Shame and Instill Hope
Growing up with diagnosed or undiagnosed ADD/ADHD can create significant shame for your client. There is often significant shortfall in academics, career history and relationships as well as frequent criticism or ridicule from parents, teachers, and peers.
Help the ADHD client to see that they have many strengths and that ADHD is just one aspect of who they are. In addition, they have compensated for it most of their lives. Validate that it may have been a difficult struggle and that their lives can improve significantly.
5. Minimize the Potential Fallout from ADD/ADHD
Even when a client understands some of the challenges that ADD/ADHD has created, it is often not clear how it has impacted other areas of their life. Help the client understand that many of their behaviors such as underperforming at work, engaging in high risk sexual activity, or facing struggles in their personal relationships are very common in patients with ADHD. Reassure them that this can improve over time with treatment, medications, behavioral treatments, or a combination.
ADD/ADHD is a serious disorder that affects all aspects of a client's life. Many of your current or future clients may not have received an accurate diagnosis or treatment for ADD/ADHD. Understanding that ADD/ADHD does not necessarily equal Adderall is imperative. Overcoming the stigma that implies ADD/ADHD is not a “real diagnosis” and understanding the significant impact that it has on a client’s life and course of their therapy can make a substantial difference to your client. In addition, screening for Adult ADD/ADHD in each of your clients, referring them for assessment and treatment, and utilizing cognitive behavioral therapy can make a significant impact on their lives.
*Disclaimer: Details of cases have been altered to protect the confidentiality of any and all individuals.
Reinberg, Steven. Adult ADHD Costs Billions in Lost Income. HealthDay Reporter at HealingWell.Com. 2004. Retrieved from http://www.news.healingwell.com/indesx.php?p=news1&id=521145
Young, Susan et al.: ADHD in Adults; A Psychological Guide to Practice. John Wiley and Sons, Ltd. 2007
Wilens,T.E. Cognitive therapy in the treatment of adults with ADHD: a systematic chart review of 26 cases. Journal of Cognitive Psychotherapy: an International Quarterly, 13, 215-226.