Beyond the label(s)

Alex, a UW sophomore studying nursing and informatics, said he feels like just another face in what he calls "the sea of the anonymous, headless bodies" at the UW. The 19-year-old wished to remain anonymous because a large majority of people who know him don't know he has autism. He was diagnosed with "high-functioning autism" by a series of doctors throughout his childhood and once again at a clinic at the UW. Alex said that while most people complain about the anonymity of the UW, that same anonymity has actually been a blessing for him. Of his friends, only two know Alex is autistic. He said he intentionally chooses to not identify this part of himself when he meets people. He has to be very close to someone, Alex said, before he reveals that aspect of himself, and even then he doesn't feel it's necessary to identify with that label. "I think people interact with me differently [when they know]," Alex said. "I definitely felt isolated. [If] I acknowledge [the disorder] and internalize it more than other people, then I get to see my ability versus seeing [disability]." Alex said he chooses not to share this aspect of himself because he has had bad experiences in the past. Rather, he said, he chooses to focus on his abilities and emphasizes his work as a student and in research, including work with the Yale Computer Science Department, the UW School of Nursing, and the Information School, among many others. "There is no 'you're disabled if you have this GPA' kind of thing from the people I've talked to," Alex said. "I've been on honor roll since I've been at UW." Alex said that of the friends whom he has told of his autism, he waits until they know him well enough that they are able to see beyond the label of autism. His parents have supported him emotionally and financially throughout the diagnosis process, but outside his family, Alex chooses to keep his diagnosis a secret. But Alex has wondered if by stripping himself of that label, he loses part of his authenticity. He said he doesn't have the answer to that question, but it's nonetheless important to him to focus on other, more important characteristics. "I guess I'm an optimist towards thinking the other [characteristics] will just be accepted." Alex said that he cannot empathize in a "neurotypical" way. "I can't say I perceive reality [in the same] way [compared] to you," Alex said. "My different perspective has had a ubiquitous hold over my consciousness." Alex was first diagnosed when he was three, before he even really began to talk, he said. Since that initial diagnosis, Alex was diagnosed seven more times. Autism Speaks, an autism science and research advocacy organization, estimates that more than 1.5 million individuals in the United States are within the autism spectrum. In addition to being on the autism spectrum, Alex is part Native American and identifies as gay. "I come off as a goddamn white boy, but I think it's worse to come off like this when you have all of these other encapsulated things," he said. "People don't believe me. I told someone I was Cherokee and they said, 'Oh, I see it a little.' [With the] disabled thing, I am not in a wheelchair, I don't have crutches, [and] I don't really do the rainbow shit. It's complicated." Alex said he feels like a "very complicated person." If someone asked him about being autistic, he said he would freely tell them, but with the worry that the person might focus on only the label. "I don't want to say I'm 100 things, 100 percent," he said. "I just feel like I would just end up isolating myself. Generally right now I just avoid all of that (the labels) because I feel polarization especially looking at it in a parallel focus, with all marginalized communities, there's this way of how you should act and how you should think. "Saying I'm all three, I'm transcending all three. I consider myself a skeptic towards basic ideologies with each group (ideologies for Native American, autistic, and gay). Saying all those three together would honestly ostracize me when I already feel ostracized." Alex feels that if he were to be "upfront" about being Cherokee, autistic, and gay, it would complicate everything. "I generally think it's just digestable, having this upfrontness about it, but it's hard to talk about it," Alex said. "I don't consider [autism] a disability, just a different aspect of me. On a general level I don't want to be ostracized, but being myself is great, I just don't want to have to justify who I am." Alex said seeing the world in his own way is to his advantage. "I generally [think I am] more funny and interesting than most people in my own ego world," Alex said about seeing others from the perspective of a person with autism. "You're dealing with someone who is more interesting, [someone who] sees things more interesting than people who are neurotypical." Alex has been dealing with doctors and diagnoses since the age of 3. He said that when he was growing up, he "overreacted" and was aggressive "out of confusion." As he got older, he was enrolled in specialized programs with one-on-one attention. By middle school, he was less confused and more able to "blend in." "I didn't understand social convention, [or] concepts of egocentrism," he said. "I thought everyone saw what I saw. If I don't have to say anything, I just look like a student." Alex utilizes the Disability Resources for Students (DRS) to get longer testing time. Dyane Haynes, director of DRS, said that DRS typically has 1,000 students using their services, with anywhere from 200-300 students who qualify for services but don't take advantage of them. The DRS's most popular services include note-taking services, alternate-format textbooks, mobility services, furniture, classroom equipment, interpreters, housing, and test-taking services. Alex said he likes having the option for separate testing, which allows him to use a separate room and more time than is normally provided to take the test. "It's a lot more calming," Alex said. He said he only uses it for larger classes, where it is less noticeable that he is gone. He has had problems with his professors and his disability resources only once at the UW, when it was announced to the class he was in at the time that he was going to leave the classroom to take the test. "I was sitting in a room with neurotypical people, and I was singled out, and I had to tell my friend [that I am autistic]," he said. "I don't like to acknowledge that I'm different; I don't think anyone does. I like feeling I can do everything like everyone else does." In order for Alex to take advantage of the DRS services, he had to be re-diagnosed with autism. The test cost $1,000 out of pocket. Alex's dad covered the cost for him. "It's time-consuming; it's expensive," he said. "I think I grew and understood myself more, but it was expensive. It was feasible for me last year, but especially this year, hell to the no, that wouldn't have worked out." Haynes said re-diagnosis depends on the nature of the disability. Often if a student has a recent diagnosis he or she will not have to get reevaluated. But when the diagnosis is from grade school or junior high, Haynes said it often doesn't accurately reflect the current impact on how the student functions. "If a student is high-functioning autistic and has any sort of cognitive impacts in relation to that, then we're going to be wanting to know what ... the current [emotional and] cognitive impact for the student as an adult [is]," Haynes said. On-campus options for re-diagnosis are much cheaper, Haynes said. The DRS joined with two UW clinics to offer services at a much cheaper rate, otherwise they would often cost much more than $1,000. There is also temporary help available if the student is on financial aid. "They can go to financial aid and see if they can get some additional assistance, and it is usually through loan money so they would have to pay it off in time," Haynes said. However, Haynes said there is no pool of money to help students, and insurance doesn't always cover everything. "Their socioecomonic status should not be a barrier to receiving equal access to the Americans with Disability Act," said Julie Osterling, director of the UW CARE Clinic. "At this point it is, and that is not right." Alex also took his tests in high school in a different room, but he described that experience as 'terrible,' saying that he felt depressed each time he used the separate room. "I just wanted to blend in," he said, "and every time I wanted that, it didn't happen." At the UW, however, Alex said there is less of a stigma. He likes that no one seems to notice when he takes his test in another room. "Confidentiality is an important issue for our students with disabilities because there is so much stigma associated with disability," Haynes said. "[The students have experienced that stigma] already, usually by the time they get [to college], and they want to be seen as a person first, not defined by their disability that is just a part of who they are." Haynes said that like any other system, DRS resources work for some students and not others. Students are able to use their services as they need and do not have to disclose the nature of their disability to their professors when requesting additional services. "I especially think you shouldn't just see what makes you [autistic]. Instead, see what makes you a better person," Alex said. "Saying you're disabled is holding yourself to this heteronormative and Caucasian standard." Reach reporter Sarah Radmer at features@dailyuw.com.

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