Welcoming Adult ADHD into the DSM
by Craig Bruce Surman, MD
It is with great pleasure that I wrote the title of this article, and contribute it to this forum, because it is a fitting place to give witness to the successful work of consumers, clinicians and researchers whose efforts fostered formal acknowledgement that ADHD impacts adults. It has taken the collective effort of individuals standing up and asking for recognition of their challenges, and the thoughtful response of the experts who developed a name for their struggles – for the latest wave of DSM to include specific language for Adult ADHD.
This forum is fitting for marking this momentous development, because it has taken public education about ADHD such as that created by Drs. Quinn and Nadeau in ADDVANCE to broaden awareness that ADHD can exist in adulthood. Even though there is clear data that about 4% of adults have ADHD – even in international studies - many practicing clinicians, even those specializing in mental health, never learned that ADHD can extend into adulthood. Thankfully, a body of research has grown that gives a strong evidence-base to the concept of adult ADHD, and positioned the writers of the new DSM to create criteria for it.
Although the final DSM definition is scheduled to come out in May, a publication by Rosemary Tannock, who was on a working group that helped develop the new definition, offers inside perspective on the major changes that are likely to happen ( J Learn Disabilities, 2013). Here are some of the major themes that we expect to be acknowledged about adult ADHD in the new DSM:
• Adults experience symptoms differently than children: One of the biggest hurdles for clinicians to understand about adult ADHD is how it is different from ADHD in kids. The wording chosen for prior versions of the DSM was chosen for description of children with the condition. The stereotype of a hyperactive child blurting out and struggling in school just doesn’t fit the daily experience of adults. Adults with ADHD are more likely to struggle because of inattentive traits - problems paying attention, sticking with tasks, remembering, and staying organized - than because of physical restlessness. And the burden of organizational challenges is much greater when you are supposed to be the one doing the organizing!
• Symptoms may not be recognized until late in childhood: Onset of ADHD by age 7 has been required for formal DSM diagnosis. Yet many adults don’t recall these years well, or their symptoms weren’t pointed out by others until later in life. Studies strongly suggest that individuals with onset in childhood – by age 12, for example – struggle in very similar ways as individuals who had symptoms prior to age seven. The new DSM is expected to allow onset in childhood rather than prior to age seven.
• Third parties may see the symptoms differently: The DSM development committees have discussed adding a requirement that a third party – loved one, friend, etc. – give input into the assessment of whether a person has ADHD. Some studies demonstrate significant mismatch between self-report by adults with ADHD and the report of an informant. In clinical practice, third-party perspectives are invaluable for helping people see their “blind spots” – how their patterns leave them struggling, and impact other people. If the DSM committee adopts this as a criteria, it is unique because it makes the diagnostic a group effort – less of a private one between doctor and patient.
• How many symptoms are enough? Recent versions of the DSM required six or more symptoms of inattention or impulsive/hyperactive traits. The idea of having a different threshold for adult and childhood symptom burden makes sense from a developmental perspective – with adulthood comes a greater ability to control behavior, and that means it takes less symptoms to stand out as different as an adult. Research suggests that it is very unusual to have four or more of the core ADHD symptoms as an adult. In her paper, Dr. Tannock suggests that the idea of decreasing the number of symptoms was not immediately accepted, so we will have to wait to see if this concept survives in the final DSM language.
We don’t expect other criteria to change – we expect to see symptoms of the “inattentive” and “impulsive/ hyperactive” type, a requirement that they cause impairment in two or more life roles, and the requirement that struggles are not explained by another disorder. Of all the criteria, it is the requirement for “impairment” in two or more roles of life due to the symptoms of ADHD that I personally consider to be the most important. It is worth special attention when people struggle most in a particular role - for example, if they struggle primarily in school that might be a sign of a learning disability, or if they struggle socially social anxiety might be the primary concern. And there are people with ADHD symptoms who have found just the right strengths and just the right environment, so they avoid consequences of their symptoms.
It is important to note that the new DSM, like its predecessor, will have a place for people who do not meet the full criteria, but suffer in a pattern that most closely matches ADHD – previously called ADHD Not Otherwise Specified, it is expected to be called ADHD Not Elsewhere Classified. This is very important, because the same supports that help full-blown ADHD may support people who have sub-threshold versions of ADHD.
There is a reason that DSM has evolved – it reflects evolution of our knowledge of how to think about the different ways that people can struggle. By acknowledging the existence of ADHD in adulthood with clearer criteria, the new DSM will open doors for the many adults who do not have a name, or solutions, for their ADHD challenges.
Dr. Surman is an Assistant Professor of Psychiatry at Harvard Medical School. He is the Scientific Coordinator of the Adult ADHD Research Program at Massachusetts General Hospital. Dr. Surman trained in Psychiatry and Neuropsychiatry at Harvard Medical School, and now teaches clinicians in training about ADHD at Harvard affiliated hospitals. He directs an annual course on ADHD in adulthood for the American Psychiatric Association. He is co-author of "FAST MIINDS: How To Thrive If You Have ADHD (or think you might)". He also developed and edited “ADHD in Adults: A Practical Guide to Evaluation and Management” with international contributors. He lectures and consults nationally and internationally, and is a member of the Professional Advisory Board of Children and Adults with ADHD. His website is www.drsurman.com