What do I call myself?—Navigating university as a hard of hearing student with Auditory Processing Disorder (APD)

Jemimah Long

Before you start reading, remember that I am one person in the disabled community who is hard of hearing. I do not speak for everyone with Auditory Processing Disorder (APD). I am an APD advocate. I am proud of being hard of hearing and having APD, but I am not going to give you a warm, fuzzy, feel-good version of my experience. I do not want to sugarcoat it—though I will try to strike a balance. 

I was diagnosed with APD at 13 years old. Soon after, I got hearing aids. By the time I was 14, I had a remote microphone, which is worn around a teacher’s neck and connects to my hearing aids to amplify their voice. My hearing aids and remote microphone were not funded by the government because APD is often dismissed as “not a real” hearing condition. Instead, my family paid out of pocket. 

My own internalised ableism also shaped how I viewed my disability diagnosis. Growing up, before and after I was diagnosed,  I was yelled at by educators or put in time out for things like asking questions or requesting repetition because people assumed I was not listening. I learned to keep my mouth shut. Young girls with APD can easily be mistaken for simply being quiet. My secondary school experience was pretty bad, but my story here begins at university. 

APD—also referred to as central auditory processing disorder (CAPD) or central hearing loss—is a hearing condition involving how the brain processes sound. It is widely misunderstood, frequently misdiagnosed, complex, and presents differently in every person. APD is not a learning disability or behavioural disorder, though it can create difficulties in both areas. 

APD is defined differently by different people, including audiologists, because there is no universally accepted definition. Essentially, hearing is a process: the ears detect sound, send it to the brain, and the brain interprets it. With APD, the brain can misinterpret the sounds and words it receives. 

In Aotearoa, getting an APD diagnosis was complex. 

People will usually begin with a hearing screening—which can be done by a general practitioner—to rule out peripheral hearing loss (damage to the anatomy of the ear). A formal APD diagnosis is done by an audiologist using seven specialised tests that measure different auditory processes. Behavioural symptoms are also considered and can overlap with other conditions, including peripheral hearing loss, autism spectrum disorder (ASD), dyslexia and attention deficit hyperactive disorder (ADHD). 

Main, or primary, symptoms directly related to APD may include:

• Being overwhelmed by complex or busy listening environments.

• A preference for loud television volume. 

• Requests for repetition/rephrasing and clarification.

• Mishearing spoken words. 

• Hypersensitivity to loud sounds or noise.

• Appearing to not listen despite trying hard to.

• Taking a moment longer to process what someone has said.

• Difficulty listening in the presence of background noise.

Additional, or secondary, symptoms that may occur as a result of APD include:

• Difficulties with meeting academic potential. 

• Listening fatigue (e.g., exhausted after a day at university). 

• Difficulties with speech and language skills (e.g., word retrieval difficulties, stuttering).

• Psychosocial difficulties (e.g., social anxiety disorder and depression).

At Te Herenga Waka—Victoria University of Wellington, I met some amazing friends and lecturers who were accepting, patient, and kind—but not everyone is. 

Most of the difficult moments come from people not understanding APD or not knowing how to communicate with someone who has it. Three-hour lectures meant I needed my remote microphone. Handing it to a lecturer while everyone was staring at me was incredibly anxiety provoking, especially after being bullied for wearing one as a teenager. At university, I would count down from 10 and force myself out of my chair every time. 

Sometimes, when people made disparaging comments, I coped with humour, telling them the remote microphone was a recording device. There were also plenty of times when lecturers forgot to take it off before going to use the bathroom. Suddenly, I was getting bonus audio content I had never subscribed to. 

When I first started university, I asked my sister what I should call myself. She suggested “hearing impaired,” so I used that term. I would introduce myself to lecturers as “the hearing impaired student.” 

Later, I learned that “hearing impaired” is discouraged by many people in the d/Deaf and hard of hearing community because it is seen as outdated. Now, I like to say: “My identity is hard of hearing; my hearing condition is APD.” Language is important, and the terminology that people use should reflect their individual preferences. APD is a relatively new and under-researched hearing condition, so there is no long-established “community” in the same way there is, for instance, the d/Deaf and hard of hearing community or the autistic community. Because APD relates to how the brain processes sound rather than the anatomy of the ear, it is often placed in confusing categories. 

My own APD manifests in a way that resembles peripheral hearing loss, so those experiences shape how I choose to move through the world and identify with the d/Deaf and hard of hearing community. People I have met within that community recognise APD as a hearing condition and have welcomed me, which has helped give me a sense of belonging.

I had panic attacks in tutorials and lectures. I often stayed silent because I was afraid I would repeat what someone else had already said. I worried I would not be able to find the words, that what I said would not make sense, or that people would laugh and roll their eyes. 

This was made even harder by the fast-paced discussions in tutorials and lectures, where conversations moved quicker than my brain could process. The social fatigue from trying to keep up, listen, interpret, and respond was exhausting and overwhelming. When I was doing my Master’s, I finally learned that my difficulty forming sentences had a name: word retrieval difficulties. I wish I had known that earlier.

Some moments still stand out. 

One time, I logged into a Zoom lecture and the captions, which were usually visible, had disappeared. Disability Services tried to help, but the lecturer told me they had removed the captions because it made them dizzy—an explanation that none of my family or friends understood. I emailed the lecturer a long explanation of why captions are essential for accessibility and inclusion, but I never heard back. 

Another time, I had to follow up with a lecturer about enabling the captions on the lecture videos every single week. In the final lecture, they asked, “Would you like captions today?” I thanked them for asking, and they sighed at me. 

On another occasion, I emailed a lecturer asking for clarification about an assignment and was told to ask other students. I reminded them that my APD information sheet clearly stated that asking for clarification was one of my coping strategies. The lecturer’s impatience was obvious.

APD looks different for everyone. Some people use assistive technology like hearing aids and  remote microphones; others do not. Some people use sign language; others do not. Some use captions; others do not. People also develop different coping strategies depending on how their APD manifests. One of mine is humour. 

Some practical communication strategies for supporting individuals with APD in an academic institution include:

• Provide written information (e.g., before or after a lecture); include as much writing as possible on power point slides.

• Ensure captions are turned on when needed (e.g., Zoom, YouTube).

• Ensure listening breaks in lectures and/or tutorials.

• When possible, use visual cues and hands on demonstrations. 

• Be patient and let the individual take as long as they need to process and/or speak.

• When communicating with the individual, refrain from trying to hurry them to speak or help them find words, unless they ask for help. 

• Look at the individual when speaking, with a clear and slower voice.

• When speaking to the individual, stand no more than three metres away.

• If the individual asks for clarification/repetition/rephrasing—whether by email or in person—be patient, kind and responsive.

• Before starting a conversation with the individual, refer to them by their name first, to get their attention.

The most important things people can do for someone with APD are simple: be kind, be patient, use the terminology they use, provide the educational accommodations they individually need, and educate yourself. 

And remember, it is okay to ask an individual how best to communicate with them!