Diagnosis Disparities: The Experiences of College Students with ADHD
Art by Olivia White
In recent years, diagnosis and awareness of Attention Deficit Hyperactivity Disorder, or ADHD, have increased—yet many still remain undiagnosed and untreated due to misinformation and inaccessible healthcare and education systems. Those with ADHD must contend with a range of disparities when it comes to managing symptoms and receiving accommodations, including on college campuses.
ADHD is categorized as a neurodevelopmental disorder, with an estimated 5 percent – 7.2 percent of youth and 2.5 percent – 6.7 percent of adults affected. While there is no singular professional consensus, increased diagnoses can be attributed to many factors—including changes to diagnostic criteria and increased awareness of its symptoms, particularly within historically underdiagnosed and marginalized populations, for example those assigned female at birth and people of color. According to a paper published in the Journal of the Missouri State Medical Association, “Between 2004 – 2006, Black students were more likely than their White counterparts to have ADHD symptoms (12% vs. 7% respectively), but were less likely to have received a diagnosis (9% vs. 14% respectively).”
Many also are not diagnosed until adulthood, as the common stereotype of someone with ADHD, and the presentation most commonly diagnosed, is a hyperactive young white boy. It was previously commonly believed that ADHD only affected children and that most outgrew it as they aged. However, further studies and research have since found that ADHD commonly persists into adulthood.
There is also increased awareness of the fact that ADHD presents differently in different individuals. For instance, though many of the symptoms can be similar, boys are more likely to present external symptoms, such as hyperactivity and impulsivity, while girls are more likely to present internal symptoms, such as inattention. This leads to boys with ADHD receiving more attention and diagnoses than girls.
Regarding the specific label of “Attention Deficit Hyperactivity Disorder” itself, senior Lee Romaker said, “I think the label is definitely based on the symptoms of ADHD that manifest primarily in young boys. And I also think it is based upon the symptoms that are the most disruptive for other people, rather than the symptoms that are most disruptive for the person with ADHD.” ADHD encompasses a range of symptoms beyond the hyperactivity and inattention the name implies. According to Romaker, symptoms such as struggles with executive function, time blindness, and rejection sensitivity are overlooked, despite having a “big influence on people with ADHD’s lives.”
For students, this can pose problems for them within the current American school system, including at the university level. Julian Hammond, a senior in the Resumed Education for Adult Learning program at Tufts, emphasized the rigidness of assessments and performance criteria in the American education structure. “You’re tracked and graded and judged on what you’re able to produce, not what you’re able to do,” they said.
This fixation on production can harm students with ADHD, especially if they don’t know why they are struggling with schoolwork. Hammond described having internalized ableist thoughts, such as feeling they were “lazy” or “somebody who doesn’t care enough about things.” This myth of laziness associated with ADHD is an experience many share, existing both internally in their own views of themselves and externally in what others around them may assume. ADHD is also often experienced alongside mental health struggles such as anxiety and depression, further compounding challenges an individual may face and making it more difficult to navigate everyday life.
Junior Tyler Pisinski, co-facilitator of Access Betters the Lives of Everyone, explained that ADHD can affect all aspects of one’s life, despite often being associated with academic struggles. “Though there is more awareness among people our age about ADHD, I think people still think it’s contained to academics when I know in my case it kind of affects multiple areas of my life,” Pisinski said. Xe continued that ADHD affects xyr object permanence and ability to engage with friends.
Hammond emphasized students with disabilities are not the issue; the problem is the overall structures of schools and workplaces that confine people to working in a way that may not be conducive to their learning and growth. Everyone’s brain functions differently. Romaker shared a similar sentiment. “Rather than professors and the university being responsible for creating an accessible school and environment in general, the norm is to create an inaccessible learning environment. And then disabled students have to advocate for exceptions to be made,” they said.
According to a written statement to the Observer from the Student Accessibility and Academic Resources Center office, “Common accommodations [for students with ADHD] include extended time on exams, the ability to test in a distraction reduced space, access to our academic coaching and writing support and extensions on assignments as needed.”
However, in the university setting, it can be challenging to receive effective accommodations for any disability—ADHD included. Hammond found it difficult to obtain such accommodations from the StAAR Center at Tufts, resulting in an added burden of needing to frequently self-advocate. Several students voiced a desire for the StAAR Center to provide more specific information on accommodations, including a list of what accommodations are possible and what students have utilized in the past. Hammond continued that, at Tufts, there is an “unimaginative reliance on precedent. The ultimate response is basically, ‘Well, we can’t do that because it’s never been done before.’”
The StAAR Center office wrote in response to these concerns, “Our work with students is very tailored to their individual needs. Often, we are creating accommodations specific for the student we are working with, which is why you may not see it publicly listed anywhere. Students are always welcome to circle back to us if their access needs are not being met by the specific accommodations provided.”
The fact that many people—particularly those from underdiagnosed populations—are not diagnosed or do not realize they have ADHD until adulthood creates barriers for those seeking accommodations as well. Many hurdles exist to receiving a formal clinical diagnosis, including long waiting lists and insufficient health insurance.
For Romaker, a reliance on out-of-state health insurance has imposed another obstacle. “Because I have an Ohio-based health insurance, I can really only get tested and diagnosed with ADHD in Ohio,” Romaker said. “I limit my time in Ohio because it’s dangerous for me to live there as a transgender person. And so I don’t really have access to an ADHD diagnostic test.” They explained that, without a diagnosis, it is more difficult for them to receive needed accommodations.
The inability to receive a formal diagnosis can also be harmful to one’s self-image. Hammond described how they felt a kind of “imposter syndrome” and self-judgment, finding themselves wondering, “Am I just not good at doing work?”
However, even when one is diagnosed, the label of ADHD does not necessarily encompass the whole picture. “I wonder about the utility of defining a certain way of being with a word in the first place because it’s just one of potentially infinite variations of neurotypes, of the ways people’s brains operate,” Hammond said. “It’s almost like naming it and classifying it and putting it in the DSM and everything, again almost feels like it puts the onus on us, and not on the collective ‘we’ to change our ways in order to accommodate more people in general.”
Tufts students are currently advocating for a Disability Center to be established, hoping that it will mitigate the challenges disabled and neurodivergent students face in seeking accommodations and other support on campus. According to the student-created petition calling for the Center’s establishment, the Center would “provide a space for disabled students to communicate, engage, and find support within their experiences.” This would be one way of working towards a more accessible and supportive campus and college experience for disabled students.
On Tufts campus and beyond, there is a continued need for increased disability advocacy, awareness, and accurate information about ADHD. Hammond said, “The more people are vocal about something, the less that people who don’t experience it can ignore it or claim ignorance about it.”