How the DSM-5 Fails People with ADHD — and a Better Way to Diagnose

3 Comments: How the DSM-5 Fails People with ADHD — and a Better Way to Diagnose

1. PROUD ADHDer
   As a woman, having scored the highest IQ score in my 150-student eighth-grade, being expelled from school in the ninth grade as a “troublemaker,” pouring boiling water on my arm in college because no one was listening, divorcing after 5 years because of my fear of sex, diagnosed as bipolar at 28 years old, attempting suicide 3 times, diagnosed as ADHD in my late thirty’s, being admitted to several psychiatric wards during my thirty’s and forty’s, undergoing 11 ECT treatments when I was 60 (last hospitalization), retiring from Ford Motor as an IT manager for 30 years, teaching AP Calculus AB & BC online to homeschoolers for the next sixteen years, losing my job because I needed to take a sabbatical year to undergo 8 weeks of radiation for my first breast cancer, having spent the last two years feeling lost and purposeless, agitated and restless, unable to execute any of my plans to return to teaching, I’m keenly aware of the psychological hot-potato attached to ADHD, depriving adults, especially women, from appropriate treatment, in addition to amphetamines, as compared to the most-acceptable (and popular) diagnosis of bipolar. I am not denying I am bipolar, however, the amount of my past 51 years of therapy with two highly esteemed psychoanalysts addressing that diagnosis has been lopsided, especially considering my current inability to complete anything, and my total identification to every symptom in this article.

2. I could not agree more with Dr. Barkley. I believe there are several underlying issues that make this whole conversation more complicated. First, I think that psychiatry suffers from certain delusions. It is not black and white. Yet the DSM has always sought to be the definitive answer to everything, without exception. I am a huge believer in science. I love duplicatable, peer reviewed research. Without science, people would still be making claims about red food dye or too much sugar causing ADHD, like they did when I was a child. But, I agree about the importance of looking at impairment. Because when you use science to exclude from a diagnosis, you can do just as much harm to the undiagnosed as you were doing good for those who neatly fit into the diagnostic criteria.

   I also agree that we need to re-conceptualize our concepts of ADHD and even of attention. I think it’s important to emphasize frustration tolerance, or lack there of as a symptom. I believe it is essential to understand how tedium and boredom are our neurobiological kryptonite. We need to get away from talking about lazy, unmotivated, and undisciplined. I would argue, what looks like all of those things is actually the core symptom of inattention. But I agree that getting at the heart of that symptom set is essential in accurate diagnosis.

   And to bring up a few related issues that are not covered in Dr. Barkley’s article, we need to look at compensation’s and comorbidities. In my coaching practice, as well as in the body of research about ADHD, we see that impairment varies dramatically in different environments. If we’re talking about diagnosing a child, and they have to meet the criteria in two or more areas of their life, what does that even mean? For a kid there is school and there is home. And if that kid is good at school, likes school, is particularly intelligent, isn’t hyperactive, and/or compensates better, they are likely not going to get a diagnosis, even if symptoms are incredibly evident outside of school. In short, intelligence, ability to compensate, and other positive attributes mitigate some of the impact. But they should not be ignored as part of the context when it comes to diagnosis. Eventually they won’t be enough.

   As we know from research, 80 to 85% of ADHD people have at least one psychiatric comorbidity. Many have more than one comorbidity. The research also shows that depression and anxiety are the most prevalent comorbidity. Often, in my experience, ADHD mixed with serious anxiety can present almost like a separate standalone disorder. It can be much harder to diagnose a clinically anxious person with ADHD without understanding what you’re looking at. I find that often the anxiety can lead to coping strategies for the ADHD that make the person look more competent and less impaired. But beneath the surface the struggle and the turmoil are just as bad. Currently, we only ask, “what can you not do because of your ADHD?” We need to also ask, “what can you do but at an extraordinary cost?” I find that this question sheds tremendous light on people who have hit their proverbial wall later in life as well as for girls and women who we know present differently.

   Lastly, we need to think about how subjective most of the criteria is anyway. I’m 45 years old. I’ve had ADHD my whole life. I’ve been diagnosed for 35 years. I am a classic hyper active boy. And I have been a professional ADHD coach for 12 years. I still do not know what it means to be “driven by a motor.” I don’t think it can get more subjective than that. (My dad always referred to me as, “shot out of a cannon.” Is that the same thing? Is it different? Should we have a board of psychiatrists argue about it for five years?)

   Ultimately, I believe all of this still comes from a societal bias against ADHD and against its very safe and very effective treatment with stimulants. As a culture, we are so afraid of over diagnosing ADHD and so afraid of stimulants that we risk under treating a vulnerable population quite severely. Yet, we hand out oxycodone like it’s candy.

3. I’ve always admired Dr Barkley’s work, and thank him for speaking out on the challenges around diagnostic criteria via the DSM. I have long held that the reliance most clinicians place on these criteria is adding to the continued undiagnosis of many people who continue to suffer.

   At the same time I would also like to encourage Dr Barkley to try and soften his emphasis on the impairment model – yes ADHD is impairing but it in this model its deemed necessary to accept and medicate with little emphasis on empowerment models (and I am pro-medication so I don’t view the role of medication any less important). The challenge, for me, with the impairment model is that impairment currently is extremely subjective as a means of diagnosis – at which point, and by whose measure, is a symptom deemed impairing? If I am in an validating environment supportive of my needs would I still have ADHD?

   Lastly, I want Dr Barkley to say it louder for the clinicians at the back – using an onset age as a requirement is the most useless addition to the DSM when we are only now acknowledging that adult ADHD is real and that, outside of America, the likelihood of you even having ADHD recognised before the age of 12 20 years ago would be close to zero. That self-reporting becomes the only avenue to explore what my experiences were at 12 and under does not make it an objective measure (and my own self-reporting of experiencing extreme RSD at 6/7 years of age is often met with raised eyebrows because how could I assess my experience cognitively at that age).