Escaping the Hidden Prison of Auditory Processing Disorder | Angela Loucks Alexander | TEDxTauranga

13 steps and a click. These were the sounds I listened for because it meant my dad was walking down the stairs to unlock the basement door with my next meal. Always the two peanut butter sandwiches for lunch, two American processed cheese sandwiches for dinner, always left wordlessly on a chair outside my room. I wasn't talked to or touched from the ages of 13 to 17, the years I was locked in the basement. There was no running water downstairs, so buckets were my bath and my toilet. During long periods in the basement, like the three months during summer break or Christmas, it was so, so lonely. I used to stare up at the wooden beams and try to pick images out of them because there was no sound, no sunshine, only nothing. I used to go to school during the daytime to keep up appearances that things were fine because my dad and stepmom were primary school teachers. I also thought it was reasonable, and I believed them when they told me they were doing it for my own good, to make me focus. I was frightened and ashamed and told no one how I lived. My stepmother told me that children like me should be seen and not heard, and also that I wasn't intelligent enough to go to university. Fortunately for me, a group of brave girls and strong women from my high school realized something wasn't quite right, and they found a way of reaching down and pulling me up out of my basement prison. My life transitioned from darkness to sunshine in the blink of an eye. My foster mom restored me by saying, you are so good. Hundreds of times each day, I'd do the smallest thing and she'd notice, like, close the door softly. She'd say, look at what you just did. You just closed that door so nicely. You are so good. How lucky am I to have you? My mother didn't know that I wasn't living a life of privilege, and I had been pressured to tell her that I wanted nothing to do with her. My stepmom and dad didn't want me, but they didn't want her to have me either. So in the six months that I was with my foster mom, she reconnected me with my mother, who immediately showered me with all of the love she had been holding in all those years without me. And now I stand before you where you can see and hear me as a doctor of audiology. Whoa. It's hard to hear a story like that without being able to ask a few questions, eh? It's intense. But I told you my story because I know what it feels like to be set aside, to be dismissed, to be imprisoned. But I also know how it feels to be set free. School wasn't easy for me, but learning brought me joy. When I was in grad school, I had to record my lectures and re listen to them three times just to understand and remember what I had learned. And then one day, my life snapped into focus. When Jack Katz, Ph.D. gave a lecture at the University of Kansas on Auditory Processing Disorder. There was this unmistakable feeling that I was learning about something I had always known. I felt like I was falling in love. It was on that day that I decided the work I would do the rest of my life. And the wonderful Jack Katz became my mentor. This is what he taught me. Auditory processing is what the brain does with what the ears hear. When there's an error with auditory skills, it's called an auditory processing disorder. Therefore, APD is a hearing disorder that has less to do with the ears and more to do with the brain. There are a hundred of us in this room, and that means that if we represent a general population, at least 6 of you know this disorder because you have lived it. But rates are even higher in the most marginalized and vulnerable people. For example, research at the University of Auckland suggests that up to 35% of Pacific island children have this difficulty, partially due to the high rates of middle ear disorders during early childhood. If a child is learning speech and language through fluid in the middle ear space, the brain receives a distorted version of speech sounds. Rates are also higher in other populations, and it co occurs with dyslexia, adhd, autism, brain injury. And emerging data suggests that there's high rates in the prison population. If you have ever traveled to another country where they speak a different language, you may know how this feels. When the plane lands, you may be aware that people are speaking to you. But until you can process what they say, it can be frustrating, it can be confusing, it can be isolating. Now imagine having that same feeling in your own language. When you struggle to hear and understand, you struggle to feel heard and understood. Now let me take you on a journey to understand how auditory skills are supposed to be. Now picture this like a staircase and listen to this sample sound. B D. The first step is awareness. Are you aware I just said something? If you aren't, you may have hearing loss. And we overcome issues of awareness with hearing aids or cochlear implants. The second level is called discrimination. Not only can you hear those two sounds, you know that B and D are different from each other. The next level is called identification. You can hear the difference and you know that B is B and D is D. We need all of these levels to get to the final level. Our goal, which is comprehension, understanding what you hear. People with auditory processing disorder can have difficulties anywhere along this continuum. And sometimes people struggle even at that discrimination level, which can be so fundamental that it looks like a problem of awareness. So adults with auditory processing disorder often think they have hearing loss and need hearing aids. So they go to an audiologist for a hearing test. Now, a standard hearing test is where you hear a beep and you push a button or you raise your hand. That is a test of awareness. It doesn't tell us anything about how the brain processes speech. That is far more complex. Well, this exact situation happened to my client, Jackie. She had had two hearing tests, and they were both normal. Audiologists told her she was fine, but that did not match her experience. And I have made the conscious decision to believe every client who tells me they are struggling. Remember, Jackie has no hearing loss, but this is her on the day I met her. Does a hearing problem cause you to feel embarrassed when you meet new people? Yes. Does a hearing problem cause you to feel frustrated when talking to members of your family? Yes. Do you have difficulty hearing or understanding coworkers, clients, customers, or wait staff? Yes. Definitely. Does a hearing problem cause you difficulty when visiting friends, relatives or neighbors? Yes. Jackie's complaints were consistent with auditory processing disorder. She said what a lot of clients say. She had to have people repeat themselves constantly. She struggled to hear in background noise. She was always getting music lyrics wrong, and she had to use subtitles while watching TV to understand the plot, even in her own language. She also said that hearing was difficult for her even as a child. But her parents told her she needed to pay more attention. And when she got things wrong, her. Her family called her dumb. And at school she struggled to learn to read and spell. So we did an auditory processing evaluation on Jackie, and here are her. Green is good. Red means that 99.9% of the population would have outperformed her on those tasks and had better auditory skills than she did. Now remember, normal hearing test, but poor auditory processing test results. Jackie has a lot of red. She has APD Auditory Processing disorder. But this is a hopeful diagnosis because we can do something about it. And that is called auditory training. Think about it like circuit training, but where you're learning auditory skills to see a resulting improvement in potential and well being. I think it might be kind of hard to picture that. So let's do an exercise together, shall we? All right, so what's going to happen is I'm going to say a word. Or actually you're going to hear a word, and I want you to repeat it back. I'm going to do the first one with you, and then you're on your own. Let's let it rip. Eight. Eight. Your turn. Chin. Shoe. Chase. Crash. New. Slack. Feet. None. Red. Okay. I heard some nervous laughter. This is not. This is therapy, not a test. So if you got some of those wrong, do not diagnose yourselves. Okay? Only a specialized audiologist can diagnose apd. So this was just a short sample of one of the many tools that we have in our arsenal to help improve auditory skill. This one's goal is to increase your tolerance of background noise and then slowly improve your accuracy as well. Jackie had 12 sessions of auditory training once a week for 12 weeks. And then here are her pre and post test results. That was exciting. However, it is more important for me to find out, did this change her life? Did it improve things for her? So, more importantly, we listened to her. Does a hearing problem cause you difficulty when listening to TV or radio? No. Does it cause you to go shopping less often than you would like? No. No. It's not getting in the way of that? No. Does a problem or difficulty with your hearing upset you at all? No. Not now. Does a hearing problem cause you to talk to family members less often than you would like? No. Do you feel that any difficulty with your hearing limits or hampers your personal or social life? No. I couldn't believe the transformed woman in front of me. She was comfortable, she was confident, she was relaxed. And she said this actually had changed her relationship with her own father. He said that people had been hard on him, and that's why he was hard on her. And it is very difficult to be a parent or a teacher of a child with an auditory processing disorder because not listening is such a trigger for adults. How often have you heard an adult call a child a selective listener or say that their spouse has domestic deafness? Okay, I kind of like that last one. But all dad jokes aside, what if that person has a neurological condition that needs treatment? Remember how I told you I had to re listen to lectures over and over again? After a year of sitting next to Jack Katz, watching him do auditory training, I attended a lecture and I didn't have my recording device, and I panicked. I thought that the next three hours were going to be a total waste of time. But then at the end of the lecture, I looked down and I had coherent notes. I could remember what my professor said. And the first time in however long I could remember, I didn't feel tired from listening. I had not realized that auditory processing disorder had affected my own life until it was resolved. But I'm not alone. A majority of people most affected by auditory processing disorder don't even know it exists. And most professionals who know it exists don't realize it can be treated beyond devices. But I'm working to change that. I'm training and empowering audiologists and speech language pathologists how to do this work to identify and treat auditory processing. Through Auditory Processing Institute, we have tools that we can measure auditory skills in children as young as three and a half. And there is also a new protocol called the Frequency Following Response. It uses sound and it measures brain waves to test auditory processing. The amazing thing about this is it has the potential to identify children at risk of language and learning problems at birth. That's a toddler, but I mean, at birth, early intervention is key. The first three months are the most important and the first three years are the next most important. And as I am a mother now, I want my kid to have the best life as soon as possible. People with hearing loss can also have auditory processing disorder or auditory processing issues. Even just because they fix their issue of awareness doesn't necessarily mean that they're going to automatically get up to comprehension. With good hearing aids or a cochlear implant, they can also benefit from auditory training. There are heaps of different treatment types available in person, online, even apps. But what works for some doesn't necessarily work for others. But remember Jackie? The treatment she received matched the problems she had. And that is why her results were so life changing. And I have an idea on how we can do that for more people. We can use machine learning to help plan and predict treatment for every individual based on previous client data. It's an exciting time to be alive. And my hope is that anyone who realizes they're struggling with auditory processing issues will seek treatment and will be empowered enough to do that. There are just four steps to come out of this basement. It may take a bit of courage and persistence, but I can tell you right now it is worth it for a life in the sun. And you should do it because you are so good. It.