Finding freedom
Having spent five years locked in a basement as a teen, Dr Angela Loucks Alexander now uses her experience to break others free from the metaphorical prisons of their mind.
WORDS Dr Angela Loucks Alexander
PHOTOS Karlie Morrow
Thirteen steps and a click. These were the sounds I listened for because it meant my dad was coming down the stairs and unlocking the basement door with my next meal. Always the same. Two peanut butter sandwiches for lunch. Two American processed cheese sandwiches for dinner, always left wordlessly on the chair outside my room. I wasn’t talked to or touched or told I was loved from the ages of 13 to 17. This was the number of years I was locked in that basement.
There was no running water downstairs, so buckets were my bath and my toilet. I went to school to keep up appearances, to show that things were fine, because my dad and stepmother were primary school teachers. I was too frightened and humiliated to tell anyone how I lived and I thought it was reasonable because I believed them when they told me they were doing it for my own good – to help me focus.
They had pressured me to tell my mother that I wanted nothing to do with her. She thought I was living a life of privilege. She wrote me letters that I never saw. My dad and stepmother didn't want me, but they didn't want my mother to have me either.
During long periods in the basement, like the three months of summer or Christmas break, it was so lonely. I used to stare at the ceiling, picking out images from the wood in the beams overhead. There was no sound, no sunshine, only nothing.
My stepmother believed children like me should be seen and not heard. They said I wasn't intelligent enough to go to university.
Luckily for me, a group of brave girls and strong women in my high school realised 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 mum restored the faith I had lost in myself by saying, “You are so good!” hundreds of times per day. I'd do the smallest thing, such as closing the door softly, and she would notice it. “Look at what you just did,” she’d say. “You just closed that so nicely. You are
so good. How lucky am I to have you?”
In the six months I lived with her, she reconnected me with my mum, who showered me with all the love she had held in, through all those years without me.
Today, I’m a doctor of audiology and I’m telling this story because I know what it's 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 graduate school, I needed to record lectures and re-listen to them about three times to understand and remember what I learned.
And then, one day in April 2004, my life snapped into focus when Jack Katz, PhD, gave a lecture at the University of Kansas on Auditory Processing Disorder (APD). There was this unmistakable feeling that I was learning about something I had always known. It felt like I was falling in love. I knew, on that day, that this was the work I would do for the rest of my life and the wonderful Dr Katz became my mentor.
What is APD?
Auditory processing is how the brain translates what the ears hear. When there is an error in this process it is called an Auditory Processing Disorder. So, APD is a hearing disorder with less to do with the ears and more to do with the brain.
Six in 100 people likely live with the disorder, but the rates are even higher
in the most marginalised and vulnerable people. For example, research from the University of Auckland suggests that 35 percent of Pacific Island children may have this disorder partially due to the high prevalence of middle ear problems in early childhood. If a child learns language through fluid in the ears, the brain gets a distorted version of speech sounds.
APD often occurs alongside dyslexia, autism, AD/HD, brain injury, and emerging research suggests high rates in the prison population.
If you have travelled to another country where people speak a different language, you know how this feels. You’re aware they are speaking, but you can’t process what they are saying. It's exhausting, frustrating and isolating. Now, imagine feeling like that in your own language.
When you struggle to hear and understand, you struggle to feel heard and understood.
Awareness
The first step is awareness. Ask someone to say these two sounds – ‘b-eh’ and ‘d-eh’ – out loud. Are you aware that they just said something? If you aren't, you might have hearing loss. We overcome issues of awareness with devices like hearing aids or cochlear implants.
Discrimination
The next step is called “discrimination”. You might be aware that they said something, but can you tell that b-eh and d-eh are different sounds. They are similar, but they are not the same.
Identification
After that is “identification”. Let’s say you can hear the difference between two sounds, but can you identify that b-eh is B and d-eh is D.
Comprehension
We need all these steps to get to the final level, our goal, which is called “comprehension” or understanding what someone has said.
While each person with APD may struggle with a different auditory skill along this continuum, some struggle even at the discrimination level – hearing the difference between sounds.
Because discrimination is such a low-level skill, it can look like an issue of awareness and many people get diagnosed with hearing loss. As a result, adults with APD will often think they need hearing aids and go to an audiologist for a hearing test.
A standard hearing test where you hear a beep and you push a button, or you raise
your hand, is a test of awareness. This tells us nothing about auditory processing, which is far more complex.
Jackie’s test results before doing the 12-week course delivered by Dr Alexander, designed to help people with APD.
Jackie’s story
My client, Jackie, thought she had hearing loss, but her hearing tests were normal. Audiologists said that she was fine, but this didn't match her experience. During my career, I’ve learned to make the conscious decision to believe every client who tells me they're struggling.
Jackie had complaints that were consistent with APD. She constantly asked people to repeat themselves. She would struggle to hear in background noise and she'd always mishear lyrics. And she had to use subtitles in order to understand the plot in movies.
She said her ears didn't work right even as a child, but her parents said she needed to pay more attention. When she got things wrong, her family called her dumb, and then, in school, she struggled to learn to read and spell.
We assessed Jackie’s auditory processing abilities by using a battery of tests that measure different auditory skills. Here were Jackie's intial and retest APD test results:
Green is good. Red means a score worse than 99.9% of the population her age.
Jackie has a lot of red. She has an auditory processing disorder, but it's a hopeful diagnosis because we can do something about it. We can introduce auditory training.
It's like circuit training for the ears. We increase whatever auditory skills are lacking to see improvement in potential and wellbeing.
One of the exercises is called Words in Noise Training. When you hear a word, you repeat it back immediately. As the exercise progresses, so does the level of background noise.
Jackie had auditory training sessions once a week for 12 weeks and then we retested her. I couldn't believe the transformed woman in front of me. She was comfortable and confident. She told me this work had changed her relationship with her dad. He said he'd been hard on her because people had been hard on him.
It’s difficult to be a parent or a teacher of a child with APD because “not listening” is such a trigger for most adults. How often have you heard someone complain that a child is a “selective listener”? Or a husband who has “domestic deafness?” All dad jokes aside, what if that person has this neurological condition and needs treatment?
Looking back
Remember how I said I had to record all my lectures? After a year of sitting next to Dr Katz as he provided auditory training, I arrived at a lecture without my recording device. I panicked and thought the next three hours would be a waste of time. But, at the end of the class, I realised my notes were coherent and I had remembered what the professor had said. And for the first time, I didn't feel tired from listening.
I had not realised how much my own life had been affected by APD until it was resolved. And I'm not alone. A majority of the people most affected by APD don't even know it exists. And most professionals who know it exists don't realise it can be treated beyond devices. But I'm working to change that. I'm teaching courses with the Auditory Processing Institute to train and empower audiologists and speech-language pathologists to identify and treat this difficulty.
Early intervention
We have test materials that can assess auditory skills from three and a half years of age.
Right now, there is a new protocol called the Frequency Following Response that tests processing using brain waves in response to sound. It has the potential to identify children at risk of language and reading problems at birth.
Early intervention is crucial in child development. The first three months are the most important and the first three years are the next most important. As I’m 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 difficulties. They can fix their awareness issue with great hearing aids, but that doesn't automatically get them to comprehension. They can also benefit from auditory training.
We must understand that the ear is the hardware and the brain is the software. We need both to work well to have a great user experience.
There are lots of treatment types available: in-person, online, even apps. What works for some, doesn’t necessarily work for others. And, unfortunately, some approaches aren’t backed by good science.
When we went to print, Angela’s TEDxTauranga talk had over 107k views on Youtube, just days after being posted. To enjoy the powerful talk and read the incredibly emotional comments search ‘Escaping the Hidden Prison of Auditory Processing Disorder’ on YouTube and TEDxTauranga.com.
Dreams for the future
Remember Jackie? Her treatment matched the problems she had which is why her results were so life changing.
In the future, I have a dream that we could do this for more people by using machine learning to plan treatment.
My hope is that people will notice the impact auditory processing has on their lives and be empowered to seek help to improve it.
While it may take a bit of courage and persistence, I'll tell you right now, to come out of this metaphorical basement, to end the solitary confinement, it's well worth it for a life in the sun.
And you should do it because you are SO good.