In case you have yet to see a lot of it up close, I warn you, ADHD is very confusing. These are my clinical observations, after many hours and years of trying to help people. I recognize that I am very fortunate to have spent my time in such a way and learned so much. But the more I see, the less I realize I understand about how we can really help these people.
This is a topic that typically heats people up immediately and so I have learned to be very careful. There is a quagmire of misinformation, stigma and controversy that is hard to match. I am not even speaking to the issues about medications today, only the diagnosis itself. Everyone seems to feel very strongly about it; it provokes a lot of debate which sometimes veers into blaming.
Why is the topic so explosive? I am interested in the angle that the patients tend to feel very misunderstood. To me it seems like some big things must be really missing from our understanding of it. We all know it’s not one gene, one receptor, or one lesion. The biology aside for the moment, we still have to make diagnoses in order to properly treat people. I can’t support an adiagnostic framework, and in no way do I mean to imply that there is no such thing as ADHD, or that these criteria are inaccurate. What I see is there is just so much more going on for adults than the criteria describe. I think I see why so many people can’t see it clearly or don’t understand why it is so disabling, especially to adults with the inattentive subtype. It sometimes gets trivialized or linked causally to cultural or lifestyle issues. I can’t see evidence for these claims. I see people with genuine impairments dating back before grade school. I think that the things they battle are poorly characterized, partly due to how hard it is to explain and measure these things, and as a result it is still hard to know how much about how to help them.
My questions are about cognition, planning and social-emotional functioning, the things that are very hard to describe and measure. Psychological testing can help but it is a very expensive resource. What it can do is help educate people about how their own mind works, if it can be done properly. Even then there are so many things that never show up in those reports. Why?
I am struck that the diagnostic criteria that sound so simplistic, but it is because they suit children better and describe the hyperactive-impulsive symptoms, which are more obvious, in more detail. I have been talking with patients of all ages for thousands of hours about this. Their troubles seem much more multilayered than the way the diagnosis is described. Specific themes of problems plague them. It is hard to know what are core symptoms and what is coping with core symptoms, but the global picture I see is much more of a pervasive mixed social-emotional-cognitive impairment than what DSM-V describes. It isn’t just a combination of deficits in attention, executive function, or regulation. It is hard to capture in words.
To review, there are still three presentations of the disorder, according to DSM-V. A quick review of the latest changes is below.
Combined inattentive & hyperactive-impulsive
What is the DSM-5?
The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, (DSM-5), published by the American Psychiatric Association is the guide that lays out the criteria to be used by doctors, mental health professionals, and other qualified clinicians when making a diagnosis of ADHD. The DSM-5 was published in 2013 and made changes to the definition of ADHD that affect how the disorder is diagnosed in children and in adults.
What about ADHD has changed with the DSM-5?
Adult ADHD: For many years, the diagnostic criteria for ADHD stated that it was children who were diagnosed with the disorder. That meant that teens and adults with symptoms of the disorder, and who may have been struggling for many years but didn’t know why, couldn’t officially be diagnosed with ADHD. The DSM-5 has changed this; adults and teens can now be officially diagnosed with the disorder. The diagnostic criteria mentions and gives examples of how the disorder appears in adults and teens.
- In diagnosing ADHD in adults, clinicians now look back to middle childhood (age 12) and the teen years when making a diagnosis for the beginning of symptoms, not all the way back to childhood (age 7).
- In the previous edition, DSM-IV TR*, the three types of ADHD were referring to as “subtypes.” This has changed; subtypes are now referred to as “presentations.” Furthermore, a person can change “presentations” during their lifetime. This change better describes how the disorder affects an individual at different points of life.
- A person with ADHD can have now have mild, moderate or severe ADHD. This is based on how many symptoms a person has and how difficult those symptoms make daily life.
What is a significant change between DSM-IV TR and DSM-5?
A person can now be diagnosed with ADHD and Autism Spectrum Disorder.
What symptoms must a person have for a diagnosis of ADHD?
In making the diagnosis, children still should have six or more symptoms of the disorder. In older teens and adults the DSM-5 states they should have at least five symptoms.
The criteria of symptoms for a diagnosis of ADHD:
- Fails to give close attention to details or makes careless mistakes.
- Has difficulty sustaining attention.
- Does not appear to listen.
- Struggles to follow through on instructions.
- Has difficulty with organization.
- Avoids or dislikes tasks requiring a lot of thinking.
- Loses things.
- Is easily distracted.
- Is forgetful in daily activities.
- Fidgets with hands or feet or squirms in chair.
- Has difficulty remaining seated.
- Runs about or climbs excessively in children; extreme restlessness
- in adults.
- Difficulty engaging in activities quietly.
- Acts as if driven by a motor; adults will often feel inside like they were driven by a motor.
- Talks excessively.
- Blurts out answers before questions have been completed.
- Difficulty waiting or taking turns.
- Interrupts or intrudes upon others.
Combined inattentive & hyperactive-impulsive presentation:
- Has symptoms from both of the above presentations.
Reference: American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders (DSM-5), Washington, D.C.: American Psychiatric Association
Prepared by the National Resource Center on ADHD: A Program of CHADD (NRC). The NRC is supported through Cooperative Agreement Number CDC-RFA-DD13-1302 from the Centers for Disease Control and Prevention (CDC). The contents are solely the responsibility of the authors and do not necessarily represent the official views of CDC.
I believe in diagnosis. I am not taking a stand on overdiagnosis, which is a popular theme everywhere, or conversely on underdiagnosis, which is more of what child psychiatrists probably see. It is possible that both are happening simultaneously. This is a confusing and internally contradictory disorder. I think there are problems with making this diagnosis that have come from the sad problem of insufficient history-taking and insufficient time with these complex people, who struggle to express their struggles. The more I hear, the less I get it and the more concerned I am about the patients. We are apparently not helping them that much, even as more and more people get diagnosed. I think it is because we aren’t listening properly to what they say. We have certain criteria but those are the tip of the iceberg.
I am not a researcher and I am not claiming my or others’ observations to be reliable or validated. I am merely reporting that even making this diagnosis gets harder and harder the more experience I get because I find what I see is both more dramatic and more nuanced than the set of diagnostic criteria or ratings scales. The criteria we rate do not give me much of an indication of impairment for adults. Many of the hyperactive or impulsive symptoms remit or become muted while the patients can still be struggling immensely to function
When I trained to treat ADHD, my patients were children. The diagnostic criteria and the findings seemed somewhat reliable and valid. The patients now, especially the adults, present in such a complex fashion that I have started to embrace that the more I know the less I feel like I really understand.
ADHD in adults, finally acknowledged by DSM-V, remains somewhat poorly defined despite the fact that so many people need help. I have come to see them as extremely misunderstood by others and often themselves and this experience of being misunderstood is very hard for them.
Doctors need to try to become more sophisticated about this, not more reductionist. I believe ADHD to be a very significant hindrance to the people that are struggling. It often ends up looking like the story of a self- defeating or help-rejecting patient is not getting what they need. This can happen even with near unlimited resources. Certainly it happens where resources limit time with patients who need that time to process information being given to them and experiences they are having. I think this is a core paradox and seemingly unaddressed because incentives in the system have diluted and curtailed time with patients. It seems lots of people feel they are misdiagnosed with it, while others report the diagnosis was missed, and still others report complex comorbidities. It is actually anything but simple.
Here are some examples. People with ADHD will, for example, very often describe or show that they distort perceptions of time. They lose track of it very easily. They are often challenged with time management and punctuality in a profound way. It is a fundamental cognitive error that they keep making about time and struggle to correct. It is not just slow processing of information; it is the judgements and choices they keep making all the time about time. This is very difficult to address.
It is very hard to measure this time distortion in the office, except possibly by lateness and the number of no shows. It would be very hard to measure anyway, though people have tried, and very hard to capture on a checklist. It is one of those meta-symptoms that weaves its way through a person’s life and wreaks havoc. It likely doesn’t respond to medication and it can be disabling.
When we then try to treat people with ADHD, we are often expecting people to develop a new and nonnative awareness about time management when it is right in the middle of a blind spot. We expect them to self-report, self-monitor improvement, and show up on time for “med management” appointments reporting pertinent data about when the medication kicks in and wears off. No wonder we are probably treating some of the wrong patients. Some of these people are completely selected out by the very nature of the visit. Many of them furthermore cannot seem to stay in treatment, even if it is helping.
To elaborate further, these are people who sometimes show slow processing. They will describe how things take them longer, but then rush through tasks, making careless errors. They also sometimes suffer from paralyzing perfectionism and are unable to get things done. There is a kind of circular logic about them. They are typically described as inconsistent, but I find them inconsistently inconsistent.
Paralyzed by perfectionism at times, they also battle with doing the bare minimum. This is generally maladaptive in that the perfectionist tendencies will surface for unimportant things and the lack of perfectionism for the big important tasks.
Indecisiveness is a common complaint, but it often is mostly with trivial decisions. Big decisions sometimes get made impulsively. It can seem like the indecisiveness helps distract them from thinking about hard choices.
Another issue I observe is what I call the template formation problem. A series of tasks that make up a big project can later be viewed as a template for similar future endeavors. This kind of pattern recognition helps most of us with making decisions, but in order to organize around templates we need to form and retain them. Sometimes I can see this ability is hindered in ADHD.
Emotional self-regulation can be impaired and what is also striking is that the ability to describe the experience of having an emotion is often delayed or a struggle. It is almost as though the sense of time is so off that memories are not properly consolidated and narratives are not quite formed to make sense of emotions. A description of an emotional reaction tied to an event can be very hard to elicit, even if it was a strong one. There is a lack of organization or sequencing of emotional experiences. It can seem as though the emotional dysregulation in the moment interferes with the process of memory formation. Memory issues of all sorts, unsurprisingly are a common complaint, but vary widely amongst people. How can we better help with this?
All of this makes psychotherapy a profoundly challenging exercise. Getting answers to questions can be difficult in a person that might be struggling to retrieve a thought or feeling. It is very hard to tell why. Often the person might look unmotivated, depressed, limited or uncooperative, but if I talk to them long enough that might looks like something else. They do struggle to retain what is said in the office, and get easily frustrated.
While intellect can be strong, and verbal intelligence excellent, the person’s ability to synthesize thoughts in real time sometimes does not correspond to this. It feels as though these patients are often disappointing themselves and others by not quite making sense. It is so hard for them to start verbalizing a thought that they may interrupt others or themselves if they think they can succeed at expressing it. This, and the memory issues can create social difficulties.
The scope of abilities to listen to others, deal with subjectivity, empathy and perspective sometimes seems fundamentally impaired, and it is not clear which part or parts are related to the ADHD. Here it can intermingle with or mimic other problems. I worry though that these people break down with the demands of multitasking and teach themselves how to tune things out as an adaptation, picking the wrong things to tune out. Emotionally, they miss cues. I see them struggling to connect the dots about other people a lot. Relationships are often deeply affected. Learning to become aware of these tendencies is a large daunting task. Some of this may be comorbid or peripheral to ADHD but the patterns are so common it does not make sense to ignore what the patients are saying so frequently.
While often creative, people with ADHD can battle core motivation issues. Whether this is secondary, because they are frustrated or demoralized, or if the motivation is itself an issue, is one of the many questions I have. I call this the blank page problem. The struggle to write is a common complaint. Difficulties with writing cause many people to drop out of school. This needs to be studied and targeted. It is a serious issue.
People with ADHD can do poorly with rigid expectations or too much structured time and work; they can also do poorly with too little structure. They will often go back and forth between extremes, struggling to find the right mix to be productive. This is a core source of ambivalence and discontent. It is hard to guide people on this. None of this is really well understood.
I could go on with observations here, but I don’t want to go too far down the rabbit hole. It is a lot to process and it isn’t a cohesive picture, but I have tried to give a slice of my experience. The subjective experience of talking to people with ADHD can be confusing and disorganizing and certainly elicit strong reactions. It can be hard to read and write about. I know many clinicians avoid it. There is a certain chaos that is hard to articulate, whether or not one has ADHD. The work is very challenging. The difficulties here seem to defy words, as I have tried to describe.
Tell me the story, I sometimes say. This is often very challenging for any patient, but certainly often it is difficult for patients with ADHD.
If we are indeed not getting aspects of this diagnosis quite right, the future is grim because it will certainly not get any easier. I think there is work to be done, especially with finding new ways to help adult patients. The box-checking and clicking culture in medicine can erode our ability to listen and most of us already have very limited time for any version of this exploration into the minds of patients. We risk missing whole dimensions of the patient’s world as we are being forced into using crude tools and checklists that will never capture what isn’t being queried, especially when our patients intrinsically struggle in these myriad of ways to articulate their experiences and to be understood .
1. Website 1. http://www.adhdawarenessmonth.org