An ADHD diagnosis in adulthood comes with challenges and benefits

When Terry Matlen, a clinical social worker, was in her 40s, she was diagnosed with ADHD. “My entire life, there was something off,” Matlen said. This included significant anxiety as well as academic and behavioral issues, all of which started at a young age. Although Matlen was initially quite skeptical of her diagnosis, going so far as to seek out a second and third opinion, she eventually came to accept that she had ADHD.

“This makes sense now. I can’t concentrate; I can’t finish projects; my house is a disaster; I can’t get dinner on the table,” Matlen said. “Anxiety doesn’t explain the extent of my disorganization.”

Matlen was diagnosed in the mid-1990s, when many specialists still didn’t understand what ADHD looked like in either girls or adults. Matlen didn’t look like the stereotypical little boy who couldn’t sit still. Although she struggled a lot with her symptoms, which included being unable to pay attention in class or stay organized, no one recognized that the underlying issue was undiagnosed ADHD.

ADHD has three subtypes, which include hyperactive ­impulsive, primarily inattentive, and combined. With inattentive type, the restlessness is internal. “A lot of kids with inattentive ADHD get overlooked,” said Peter Jaksa, PhD, a psychologist who specializes in treating ADHD. “The behavioral problems get more attention.” For many with inattentive ADHD, they are the ones daydreaming in class rather than paying attention. However, since they aren’t being disruptive, their symptoms can easily go unnoticed.

This is especially true with women and girls, as ADHD is more often diagnosed and treated in males than females, due to differences in how symptoms look (Skogli, E. W., et al., BMC Psychiatry, Vol. 13, 2013opens in new window). As a number of studies show, untreated ADHD leads to adverse effects on long-term academic performance (Arnold, L. E., et al., Journal of Attention Disorders, Vol. 24, No. 1, 2015opens in new window). In addition, a number of studies show that those with untreated ADHD fare worse than those with treated ADHD or no ADHD (Harpin, V., et al., Journal of Attention Disorders, Vol. 20, No. 4, 2013opens in new window).

For symptoms to be considered ADHD, they must have started before the age of 12. This makes diagnosing adults more complicated, as the process requires creating a timeline of when symptoms first appeared. In addition to talking with his patient, Jaksa finds that it can be helpful to look at old report cards, where comments such as “Struggles to pay attention during class,” “Often forgets homework at home,” or “Isn’t living up to potential” can help give him a sense of when symptoms started appearing.

“We have a much longer history to look at,” he said. “The best diagnostic indicator for ADHD is not test scores; it’s history.” For the diagnostic process, Jaksa conducts a very structured interview—one that delves into their social, emotional, and academic history. If possible, he interviews a family member who can provide perspective on childhood behaviors.

Jaksa said adults often have comorbidities, such as anxiety and depression. With these comorbidities, untreated ADHD can either cause them or make them worse. “When ADHD is not diagnosed—when it’s not treated effectively—over time, chronic stress and frustration lead to anxiety,” Jaksa said. “This has a very negative impact on self-esteem. It’s very common to see adults with ADHD grow up with a strong sense of underachievement.” Continually hearing messages like “try harder” or “you should be doing better,” can get internalized and lead to anxiety and/or depression, Jaksa said.

In some patients, providers may recognize signs right away, such as tardiness, forgetting valuable personal items, or fidgeting while in the waiting room. Although no one symptom can be definitive, all of this added up can paint a picture of what the symptoms look like, how long they have been going on, and the degree of functional impairment. “My mind is shifting constantly,” said Lisa Green, an oncology nurse who was diagnosed with ADHD in her 40s.

It also helps the diagnosis if there is a family history of ADHD, as it is a highly heritable disorder. For Matlen, the process of seeking a diagnosis for her younger daughter was when she realized that she also had the disorder. “It’s pretty well established that ADHD is about 70% to 80% heritable,” said Eugene Arnold, a professor emeritus at The Ohio State University whose research focuses on ADHD.

One of the challenging aspects of diagnosing an adult is the presence of other comorbidities, some of which can mimic ADHD symptoms. These comorbidities can either be due to a separate disorder or be caused by the ADHD. For many people with ADHD, Matlen included, the lack of early treatment, combined with symptoms of ADHD, can lead to developing mood disorders such as anxiety and depression. If their underlying ADHD is not diagnosed and treated, treatment for their other comorbidities is often ineffective. (Ginsberg, Y., et al., Primary Care Companion for CNS Disorders, Vol. 16, No. 3, 2014opens in new window). “My anxiety is triggered a lot by being disorganized, by not being prepared, by being constantly overwhelmed,” Matlen said.

There’s also an overlap between ADHD and autism spectrum disorder (ASD). “About half of people with autism also have ADHD,” Arnold said. With ADHD being more common than ASD, the reverse is not true—with a lower proportion of people with ADHD also having ASD.

Jon Stevens, MD, a psychiatrist based in Houston, compares the onset of symptoms as being like layers of an onion: The deepest layer is developmental disorders, such as autism; the second deepest layer is ADHD, for which the symptoms can be observed quite early, followed by mood disorders such as anxiety and depression, which can develop as early as middle or high school. Finally, the outermost layer is schizophrenia and bipolar disorder, which tend to emerge during college years or a little later.

“These conditions, in my experience, develop inside out,” Stevens said. Symptoms of developmental disorders such as autism show up the earliest, while ADHD symptoms will show up a little later. Some of the more noticeable symptoms, such as hyperactivity, parents will start noticing early on, while other symptoms, such as inattentiveness, will start becoming more noticeable once children start school.

Another major difference is the persistence of symptoms. “If you think about anxiety and depression, those disorders and the symptoms that flow from them, tend to be more situational and more cyclic,” said Will Canu, PhD, a professor of psychology at Appalachian State University. With a disorder like ADHD, the symptoms are always there, with the caveat that they can be exacerbated under certain conditions, such as during times of stress or from anxiety or depression.

The Covid-19 pandemic was particularly hard on those with ADHD because of the disruption in routine. Routines are important for people with ADHD, as they can help with executive functioning issues, such as staying organized and staying on track. However, developing and maintaining these routines is harder, which means that major changes in working and home life have been particularly hard to navigate.

[Related: Helping adults and children with ADHD in a pandemic world]

In Stevens’ clinical practice, he has seen patients cope with stress from the pandemic in a number of ways. For adults who were actively receiving treatment, the shift to working from home offered some benefits. “Provided they kept taking their medication, they generally fared well,” he said. “A lot of my patients found [working from home] more helpful, because there were fewer distractions of the water cooler chatter or someone coming to your cubicle.” The big exception was if patients started self-medicating with alcohol or other substances.

Constant upheaval, combined with childcare disruptions, created extremely difficult conditions for women with undiagnosed ADHD and young children, Canu said. In addition to major disruptions in routines, the unpredictability of school and daycare closures has been particularly challenging for parents with young children.

For many patients whose symptoms were overlooked during their early years, diagnosis can be both life changing, and bittersweet. In a 2020 study, researchers compared 444 adults with diagnosed ADHD with 1,055 adults who exhibited symptoms but had no formal diagnosis. After matching for age and gender, those with a diagnosis reported a higher quality of life, which included metrics for work productivity, self-esteem, and functional performance (Pawaskar, M., et al., Journal of Attention Disorders, Vol. 24, No. 1, 2020opens in new window).

Canu said being diagnosed helps people understand themselves better, which includes gaining perspective on the reasons for some of their struggles. “That can change the way they feel about themselves, which can cascade into a lot of positive things,” Canu said.

Treatments include behavioral strategies for managing their symptoms, for which working with an expert, such as a psychologist who is experienced in treating patients with ADHD, can be invaluable. This includes cognitive behavioral therapy for ADHD, which focuses on managing executive functioning difficulties such as time management, organizational skills, impulse control, and emotional self-regulation.

When necessary, medication can also help manage symptoms. For psychologists who do not have prescribing privileges, this can mean working in concert with integrated care teams, primary-care providers, or psychiatrists. For many patients, their most effective treatment regimen is a combination of behavioral strategies and medication. “With that in place, if it’s effective, they’re able to function better,” Canu said.

In a 2014 study, 250 previously nonmedicated adults who received the ADHD medication methylphenidate for the first time were followed for a full year, with those patients who either couldn’t tolerate or didn’t experience relief in symptoms switched to either an alternate stimulant medication or the nonstimulant medication atomoxetine. Compared with their peers who discontinued medication, those who were still on medication had reduced severity of symptoms (Fredriksen, M., et al., European Neuropsychopharmacology, Vol. 24, No. 12, 2014opens in new window). “Medication slows me down enough to breathe and to think,” Green said.

Receiving a diagnosis as an adult can often bring up some complicated emotions, whether it’s grief over lost opportunities, relief at finally understanding certain struggles, or anger over symptoms having been overlooked for so long. For Matlen, she felt an overwhelming sense of relief. “There was a concrete explanation,” she said.

For others, receiving a diagnosis later in life can lead to regrets about lost opportunities, whether it was failing out of school, struggling to establish a career, or experiencing relationship issues because of their ADHD symptoms going overlooked and untreated. “There is a lot of grief work that needs to be done to help work through the many years of struggling and not knowing why,” Matlen said. However, in her experience, “Once all those parts and pieces are looked at with this new understanding, people really take off, in a good way,” she said. Often, therapy is an important component of thriving after a diagnosis.

For Matlen, in addition to gaining a better understanding of why she was struggling so much, receiving a diagnosis and treatment changed her entire life. It ended up being the missing piece that helped ease her anxiety. Once she had a diagnosis and started treatment, her issues with anxiety started improving in a way that years of therapy and antianxiety medication had never been able to accomplish.

Given how life-changing her diagnosis was, combined with the lack of information and resources available, especially for women, Matlen ultimately made a career switch, combining her own experience of growing up with undiagnosed ADHD with her background as a clinical social worker. She went on to write the books The Queen of Distraction and Survival Tips for Women With AD/HD. She also founded a Facebook group for women with ADHD, which now has over 36,000 members, and she often consults with specialists on the realities of living with ADHD.

Now, almost 30 years after her initial diagnosis, Matlen still hasn’t seen nearly as much progress in the field as she had hoped, especially for girls and women. “I see the same stories even now,” she said.