16 minute read
Diagnostic deficit
WRITTEN BY ELIZABETH GUTHRIE
DESIGNED BY EMMA KUMER
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PHOTOS BY LETA DICKINSON
“It’s about time!”
That’s how my best friend reacted when I revealed my attention deficit hyperactivity disorder (ADHD) diagnosis. He’d known me since I was six, and he had seen what a chatterbox I always was. He knew I would forget to raise my hand sometimes before blurting out an answer. When I wasn’t chatting away during class, I often sat quietly, immersed in my own elaborate daydream, and the next thing I knew, the class was splitting off into groups for some assignment and I’d ask, “Wait, so what are we doing?” I knew he grew tired of my constant tardiness, and I was embarrassed by my messy room, though cleaning it always seemed too overwhelming. He saw me procrastinate on projects, and he comforted me through my volatile emotions.
But I had no explanation except my own shortcomings for nearly 20 years. When I went off to college, I struggled to tackle
the hours of homework before me. I sat in the library with friends, wondering how they could just sit there and write a paper without having to take breaks every five minutes for a BuzzFeed quiz.
I read online that behavioral troubles and academic struggles were common symptoms of ADHD. I realized my inability to focus wasn’t normal, but I doubted I could have ADHD. My teachers often laid into me for talking too much, but I never really got in trouble. I’d always struggled to focus in school, but I still made great grades. So how could I have it?
Throughout Spring Quarter, I kept telling myself I’d see a doctor, then continually put it off. Over the summer, I continued to doubt my hunch, but I finally made an appointment just before beginning school in September. I received a diagnosis for predominantly inattentive ADHD. It wasn’t exactly good news, but I couldn’t help feeling excited at the discovery of a name for what I’d been experiencing my whole life; all of the symptoms I’d grown up with weren’t just my fault.
Suddenly, I had a new identity, and it came with new medicines, stigmas, misconceptions and understandings of myself. I realized that for 19 years, I’d been navigating a world that was not built for my brain. For the past year, I’d been traversing an environment that can be especially difficult for those whose brains don’t function typically, from hours of unstructured work to intense academic competition. But I realized that I was not alone in these struggles – Northwestern is full of students like me, learning what it means to live in a world not designed for us. More specifically, I’m not the only young woman dealing with the discovery of a new diagnosis.
“In general, women get identified as having ADHD later than males do, in part because of the manifestations being different,” says Steven Zecker, associate professor of Communication Sciences and Disorders in the School of Communication. Boys with ADHD more commonly display high levels of hyperactivity, and these are the cases that are typically identified in early childhood. Girls are more likely to have the inattentive symptoms of ADHD, which tend to be identified later. The less visible symptoms that fall under the inattentive category are more difficult for parents and teachers to notice, so many girls are not diagnosed until later in life.
DIAGNOSIS COMES FROM THE GREEK THROUGH, THOROUGHLY AND TO KNOW,
PERCEIVE – AND FOR THIS STUDENT, DIAGNOSIS HELPED HER
THOROUGHLY KNOW HERSELF.
According to a January 18 report from the Centers and for Disease Control and Prevention, the number of privately insured U.S. women ages 15-44 who filled a prescription for medication to treat ADHD increased 344 percent between 2003 and 2015; and this increase was largest for women in their late 20s and early 30s.
I am one of these women. When I realized how different it looked to have predominantly inattentive ADHD, it all made sense. Although you might have found me shaking my leg or twirling my pencil in class as a kid, you were more likely to find me checked out into an extensive daydream.
SESP junior Eli Diamond is also in this group – she was diagnosed with ADHD during her freshman year at Northwestern. “A lot of the things that people with ADHD struggle with, like organization, are things that are coded as feminine,” she says. “So when you struggle with them, people just assume that it has something to do with not being feminine enough or is somehow a character flaw and not something that is disordered.” Diamond, who has been out as gay since she was 16, has acutely felt the stigma of not being feminine enough.
Alison May, Assistant Dean of Students and director of AccessibleNU, also noted the intersection of gender and disabilities. “I feel like there are so many expectations on women. We have to be that much better. It’s one thing to be equal to a man, but we have to do even more to be taken seriously in a lot of realms.”
With ADHD, it’s even harder. “We’re expected to be multitaskers,” May says. “We’re so socialized to sit quietly and behave in a certain way, whereas boys are just being boys when they’re running around the classroom and standing on their desk.” Gender is not the only identity that creates disparities in ADHD diagnoses – children of color are also less likely to be diagnosed.
Bobbie Burgess, a Black McCormick senior with two specific learning disorders in reading, and fluency and math, has noticed this imbalance. “African Americans aren’t necessarily all presented the same opportunity to find out whether or not they have learning disabilities given economic status, where they went to school, resources, et cetera,” she says. “I feel like I’m pretty alone in terms of that space, feeling like not a lot of people that look like me have an LD [learning disability].”
Diamond’s experience with ADHD and its intersection with her other identities has influenced her career and education decisions. After learning about the way her brain works, she decided to major in human development and psychological services, and plans to go into counseling or psychology to work with people with ADHD and other disabilities after graduation. “It’s just really important to me that not all girls or kids of color have to wait until they’re 20 and struggling,” she says.
ADHD was first classified in the Diagnostic and Statistical Manual of Mental Disorders (DSM) II in 1968 as “Hyperkinetic Reaction of Childhood.” The term ADHD was first introduced in the revised edition of the DSM- III, eliminating ADD without hyperactivity. Finally, in 1994, the DSM-IV added three subtypes of ADHD – predominantly inattentive, predominantly hyperactiveimpulsive and combined.
The DSM-V of 2013 has not changed the core criteria for diagnosing ADHD, but it added examples of what the criteria looks like in older adolescents and adults.
Awareness of less-visible symptoms has been increasing, according to Zecker. The new definition shows a better understanding of the inattentive component that tends to affect women, and the recent changes show growing emphasis on the ways in which ADHD manifests in adults.
Still, misconceptions remain. The hyperactive symptoms often appear to wane, and from the outside, it may seem like the disorder has disappeared. But this isn’t the case.
“You just don’t see 21-year-olds who can’t stay in their seat and are running around a classroom or a lecture,” Zecker says. “But for many individuals who have a history of overactivity, there are feelings of restlessness that are every bit as debilitating as actually doing it.” Individuals with ADHD may get better at concealing their disorder, but that doesn’t mean they’ve outgrown it.
The ability to mask hyperactivity isn’t the only reason many are skeptical of ADHD.
“One of the hallmarks of ADHD is that behavior varies more from minute-to-minute, day-to-day, than with other people,” Zecker says. “And I think a common misconception that people have is that the behavior is to some degree willful.”
Since our behavior varies so much, we may seem more hyperactive or inattentive one day than another, and this leads to the belief that we choose when we experience these symptoms. Peers may think, “You were fine yesterday, why are you struggling today?” I have asked myself that question countless times – why can’t I get myself to do what I know I’m capable of? But now I realize that it’s just the nature of my disorder. One day I can hyperfocus on a paper, and the next I’m struggling to write a full sentence without getting distracted.
One of the most common misconceptions about ADHD is that it simply isn’t real. Skim the internet for a few minutes and you’ll find countless articles and blog posts claiming that it was invented by Big Pharma to get children addicted to drugs. Everyone can get distracted or feel hyper sometimes, so why is it a disability?
It’s true that everyone gets distracted sometimes, but that’s not all ADHD is.
“It’s not enough just to say, ‘Oh, all these things are problems for me.’ What can’t you do as a result of it? That’s the key,” says Lee Schwartz, a doctor and professor at the Feinberg School of Medicine who works with adults with ADHD. “Their brains are programmed differently.”
The skepticism surrounding ADHD adds to the struggles that students with ADHD already face. “If people can’t see it, a lot of the time they don’t believe that it’s there, which makes access to various resources a lot more difficult,” says Scott Gerson, a SESP student who graduated in Fall 2017.
Being diagnosed as an adult came with its own unique set of stigmas and misconceptions.
“It can’t be real if it took them so long to diagnose you!”
“How could you have gotten into Northwestern if you had ADHD this whole time?”
“You did well your first year in college. You couldn’t have ADHD!”
I internalized these comments and procrastinated seeking help.
Diamond also heard that she was too smart to have ADHD. “I had been tested as a kid three separate times, and every time, I was told that I was too good of a student, my grades were too good,” she says. “I would say ‘Hey, I’m struggling,’ and it would end with the doctor being like, ‘You don’t have it,’ and my mom being like ‘See, you must just be lazy.’”
After being diagnosed her freshman year, she felt incredible relief. “No, actually, I’m not lazy,” she says. “I’ve just had to work twice as hard as everyone else to do half as much.”
As individuals with ADHD age, their challenges become increasingly difficult. Many students, like Diamond and myself, can develop strategies to deal with our struggles as children and teenagers, but find this harder to do with the intense workload and lack of structure in college.
“A big part of that is you are just so bright, and you’ve figured out really good ways of compensating,” May says. “You’ve probably had to work twice as hard, and again, that serves you well even for a time at Northwestern,” she says. “It seems like what happens is the work just keeps piling up, and it’s not possible all of the sudden to do your assignments at the last minute because you have seven assignments due all at the same time.”
Schwartz has observed similar patterns among his patients. “You’re only in class 10 or 15 hours a week, and setting a schedule can be disconcerting for somebody who has ADHD,” he says. Even for those whose ADHD was undetected in high school, the lack of structure upends traditional coping mechanisms.
“This idea that learning disabilities or cognitive disabilities are only present in kids and adults who aren’t smart is a ridiculous stigma, and it’s just not true at all,” Diamond says.
Although most discussions of ADHD focus on how it affects schoolwork and classroom behavior, it pervades all aspects of life, from college parties to everyday social interactions.
“I think people don’t have any concept of how much ADHD can impact one’s kind of mental health, one’s friendships, one’s social life,” May says.
People with ADHD often struggle with sensory integration, which means they have trouble filtering important stimuli from unimportant stimuli. Typical college environments, like crowded basement parties, can overwhelm someone who has trouble ignoring irrelevant stimuli. “I would go to [parties] and I would have fun, but a lot of the time being in a loud room with a lot of people who I don’t know, it’s just overwhelming and kind of unpleasant,” Diamond says.
Other common characteristics of ADHD, like impulsiveness and issues with time management, can cause problems with friends. “The person often is late and that irritates people because it makes them think that the other people’s time isn’t important,” Schwartz says. I used to laugh about being known as the perpetually late friend, but I still felt guilty every time I kept someone waiting with my tardiness. It always seemed like no matter how hard I tried to be punctual, my clock was running at a different pace.
“They can get themselves into trouble for having said something they should have been thinking,” Schwartz says. “Then a fight starts or they get into trouble in a social setting.”
For McCormick junior Ryan Albelda, part of having ADHD has been learning to apologize. “I do interrupt people, but I’ve learned I have no shame in saying sorry,” she says.
Albelda’s ADHD has affected social situations from flirting to sorority recruitment. “During sorority recruitment, actually, when women would hand me their jackets, I would play with my hands underneath their jacket,” she says. “And that’s a trick I knew and had practiced, because I don’t want people to see that I’m fidgeting, but I kinda need to do it to help myself.”
Sometimes, it feels good to fidget freely and not have to worry about what people will think of your restless hands or impulsive interruptions. Albelda has found a supportive community in Eye to Eye, a mentoring group that connects college students with middle school students with ADHD and learning disabilities. Being a part of this community has helped her become more comfortable with her ADHD. “There are these moments where I meet total strangers and they have it too, and it’s like, that’s so exciting!” she says. “It’s this cool bond, and I really love that.”
In spite of the challenges it creates, she’s found things to love about her brain. “I love how I get so excited about things,” she says. “If someone’s like, we’re going to a new restaurant, I’ll be like, ‘That’s so cool! Look at all the colors on the walls! If I’m all loud and crazy, that’s just who I am.”
After receiving my diagnosis, my next step was to begin medication, which came with its own set of challenges. Two of the most common side effects are loss of appetite and insomnia. For individuals with ADHD, forgetting to eat can be a common occurrence, and having a suppressed appetite doesn’t help. ADHD medication can be a double-edged sword: the drugs help your mind, but a shortage of food and sleep makes it difficult to care for your body.
For me, the most difficult part was adjusting to the fact that my brain was functioning differently. It’s easy to forget while taking medicine that it’s not just giving me the ability to focus better – it’s changing my brain chemistry. On medication, I finally felt like I was able to focus as much as my peers, and my brain was able to view the work ahead of me in a linear, taskoriented way. Yet being this way has sometimes made it difficult to transition from work to relaxation in the same way my peers do. My experience with medicine has been positive overall, but it’s never a simple process to adjust to changes in brain functioning. It’s a complex, ongoing affair that I’m still working to understand.
Gerson also had a complicated experience with medication. He began taking extended release Concerta after being diagnosed with ADHD in fourth grade, and took it every day until January 1 of his sophomore year, when he decided to stop.
“I didn’t feel like I was being myself,” he says. “It kind of squished a lot of my creativity out of me I felt like, and kind of dulled me. I was taking it more to appease other people and to not annoy people than I was for my own wellbeing, and so I decided to stop doing that. And then I had to readjust my expectations after I stopped taking meds for what life would be like and what constituted normal.”
May has seen the students she works with struggle with these nuances. She describes a “cost benefit that I think most individuals with ADHD have to weigh every time they decide to take one of the pills.” That’s something recreational users of stimulants don’t have to consider.
Many students likely hear more about ADHD medication than the disorder itself. Stimulants like Adderall and Ritalin are known for making people hyperactive, shaky and awake for hours. Abuse of these “study drugs” is a common occurrence on college campuses.
But according to Schwartz, stimulants typically have a calming effect on those with ADHD. “It has the reverse effect because it’s being used on someone who truly needs it as opposed to somebody who just needs the stimulant effect to stay awake,” he says.
The stimulants have had this calming effect for Diamond. “Sometimes it helps me fall asleep because it just kind of makes my mind stop racing for a second,” she says.
College students popping an Addy to write papers have raised concerns about the use of drugs to treat ADHD – despite the overwhelming evidence that medication is the most effective treatment. It makes the process of obtaining it more difficult for those who truly need it.
I received my diagnosis at home in Kentucky shortly before returning to school in September. To get my medicine, I had to receive a paper prescription and personally take it to a pharmacy in the area to get it filled. I couldn’t get it filled across state lines or have it sent to me across state lines. I had to schedule an appointment to see my doctor again in 30 days, and after that, every 90 days. At these visits, I have to take a drug test to ensure that the Adderall is in my system to prevent me from selling it. If it isn’t, then I can’t continue to receive a prescription. Adderall leaves the body very quickly, which means if I forget to take it the morning of my appointment or run out before my visit, I might not pass the test.
Although medicine has benefits for many, it’s not a cure-all. According to Zecker, therapy that addresses issues with executive functions, such as time management skills and shifting from one activity to another, is another good tool. Executive functions are a set of mental skills involving self-control and self-regulation, especially in regards to achieving goals and completing tasks. As individuals grow older and better understand their disorder, they’re better able to manage these executive functions and figure out strategies for dealing with their symptoms.
Schwartz’ behavioral interventions range from strategies to ensure patients don’t lose their keys to helping patients create detailed schedules for completing assignments. He emphasizes the importance of setting daily goals that patients know they can accomplish.
“I’ll tell them that we want to make sure you can go to bed feeling like you accomplished it, because a lot of people with ADHD will tell me they feel badly because they constantly can’t get the stuff done they planned,” Schwartz says. “I’ll say, ‘What is it that you know for sure you’d be able to get done today?’ and you have a guarantee in your head that you’ll be able to go to bed saying you accomplished it.”
For Diamond, therapy and medicine have unique benefits. “Medication is great. It helps me in a lot of ways that therapy just can’t,” she says. “But therapy also helps me in a lot of ways that medication can’t. There’s emotional effects and other stuff like that, so just having someone to help me process emotions, or just to think through everything that I have to do and be able to take a breath and have somebody to help me process my thoughts is super helpful.”
Therapy can also help with conditions that are often comorbid with ADHD, such as anxiety and depression.
“If a person doesn’t have external hyperactivity, internal hyperactivity - I believe it manifests itself as anxiety. That same sense like ‘My brain is always working, I’m always in overdrive,’ can feel like anxiety,” Zecker says.
“It’s just like having too many thoughts,” Diamond says, “and when you have more thoughts, it’s more likely that some of them are gonna be negative.”
In addition to medication and lifestyle changes, students with ADHD and other learning disabilities benefit from a variety of services provided by AccessibleNU. Eight percent of the undergraduate body at Northwestern is registered to receive these services.
“Nothing really that we’re going to do is going to make it a level playing field, but this is our attempt to get close,” May says.
Common services that students receive include extended time, distractionfree environments for exams and note-taking aids. AccessibleNU offers academic coaching too. May says AccessibleNU tries to build on strategies that students have already developed.
“It’s trying to assist with adapting those at the university level, always with an eye on ‘How can you be enjoying your time here too?’, or ‘How can you be happy?,’ not just an academic machine,” May says.
But some academic challenges are more difficult to provide specific services for, such as difficulties with the learning environment or professor’s teaching style.
“[The] teaching style doesn’t always work well with my processing speed,” Burgess says. “If they’re all over the place or not really good at writing things down on the board, then I’d have to do a lot more in my head to figure out what’s going on.”
To address these issues, which are persistent in higher education, May advocates for universal design for learning and an educational model that aims to create a classroom environment that is accessible for everyone.
“We’re working now more broadly with faculty to work on incorporating accommodations into their classes that would apply for all students, with the hope that it becomes a more equitable campus,” May says. “I feel like individuals are disabled by the academic environment.”
Despite the efforts to make Northwestern a more equitable campus from AccessibleNU and other advocates, accessibility services still have their own stigmas and misconceptions. “I think one thing I still hear,” May says, “is that the idea of registering with our office and using accommodations is so that you don’t need them later. And that’s a misnomer. These are lifelong conditions.”
“I would say the stigma comes from people who are just coldhearted being jealous of you getting extra time,” Burgess says. “And I’m like, don’t be jealous, ‘cause I need that, and I can’t be on the same playing field as you.”
Despite this reputation, AccessibleNU has played a key role in allowing Burgess to feel comfortable with her learning disability. “From day one I felt at home,” Burgess says. She often stops by the office just to say hi to the staff because she feels so comfortable there. “They don’t make you feel different, and your LD can make you feel different at times.”
Ultimately, these experiences have given her the opportunity to embrace her learning disability in spite of its difficulties. “Northwestern’s given me the space to come to terms with my LD and that part of my identity.”
I agree with her sentiments – although I’ve only spent a short time here with my diagnosis, I’ve already begun to better understand this aspect of my identity. When I first heard comments questioning how I could be a successful Northwestern student if I struggled with ADHD, I didn’t have an answer. But now I know the answer: people with ADHD are not less intelligent than those without it. We are here at Northwestern, and we don’t have to justify how that happened. You may not see us – we likely won’t look like the stereotype of ADHD that you have in your head. ADHD manifests in many different ways, like fidgeting, impulsiveness, daydreaming, disorganization and a myriad of other symptoms. But we are not less driven or hardworking or talented. We have a unique set of struggles that our peers don’t have, and we’re still here. And we’re thriving.
