Ex-patriate American audiologist DR ANGELA LOUCKS ALEXANDER lives on Queensland’s Sunshine Coast.
She has overcome abuse to shine on the world stage and establish the Auditory Processing Institute to train her peers and help patients escape “the hidden prison” of APD.
After working with auditory processing disorder (APD) patients for two decades, Dr Angela Alexander is on a mission to put the condition on the map and train audiologists worldwide in effective diagnosis and treatment. She is so passionate about spreading the word that she even hosted a TEDx talk featuring a harrowing recount of her childhood, which was the most watched TEDx worldwide in September 2021, attracting 1.1 million views.
Her message is simple: it’s vital parents, teachers, health professionals and people with this often-neglected disorder know it is real and something can be done to help the many people it is preventing from living a full life. She has even successfully treated many colleagues and other health professionals who were both previously unaware of the impacts of APD.
Prevalence estimates vary from 3% to 10% of the population, meaning up to 2.6 million Australians could be affected. APD is a generic term for hearing disorders that result from atypical processing of auditory information in the brain and relates to how efficiently and effectively people process what they hear. The ears and brain don’t fully coordinate to understand sound, especially speech.
“Most people affected by APD don’t even know it exists and most health professionals who know it exists don’t realise it can be treated beyond devices. I’m working to change that by training audiologists how to identify and treat it through my institute,” she says.
Dr Alexander has evaluated and provided therapy to hundreds of patients so they can hear and understand more quickly and accurately. In the past six years alone, through her institute, she has upskilled about 250 audiologists and speech pathologists globally in diagnosis and therapeutic options; about 80% are from America and Canada, 10% Australia and 10% other countries. “It’s exciting because when I started there were maybe 250 people treating APD worldwide so we’ve about doubled it but there is still such a long way to go,” she says.
Does the patient say they have difficulties?
The institute stemmed from a lifestyle change when Dr Alexander had her daughter in 2018 while living in New Zealand and working in her private practice seeing APD patients full-time.
“I was most of the way through my pregnancy with Isobel when I realised my therapy clients weren’t going to have any help,” she recalls. “I thought, ‘I think I can make a therapy program online that they can follow’, so I created a direct-to-client program.
“Then an audiologist reached out and asked, ‘if you can treat someone online, could I take that and learn how to do the treatment?’ That started my first course in auditory training. Then someone else asked if I could teach diagnosis too. I took that as a sign to get started.”
In 2020 after living in New Zealand for 10 years, she moved to Australia with her family during the pandemic. Lockdowns meant audiologists had time at home and the online courses took off. “There was a growing contingent of hard-working, creative audiologists wanting to learn how to do this work in their private practice. I led courses over Zoom and through on-demand lectures, and switched to tele-practice for my patients,” she recalls.
“I believe every dispensing audiologist should have APD assessment skills because once you start sensing these red flags you should be able to help patients. Everyone with APD can have some type of improvement with auditory training. We need to identify them and realise there are treatments available and we need to do this more proactively.”
APD is not on the curriculum at all universities, Dr Alexander says. “Audiology hasn’t done a great job of working together on this project and that’s one thing I am trying to change. The most important part is, ‘does a patient say they have difficulties?’ In audiology we are so used to saying, ‘I’m going to do this test to tell you if you have a problem.’ We need to look at it the other way around; does the client say they have a problem? If so, we need to use tests that quantify that problem and devise a treatment plan and we haven’t been doing that well.”
Dr Jack Katz, a world-leading expert in APD therapy from the US, describes it as, “Auditory processing is what the brain does with what the ears hear.” Dr Alexander expands on this saying, “auditory processing is the function and APD is when that doesn’t go well and it could happen anywhere along the auditory pathway.”
Causes could be congenital, acquired from middle ear infections, head injuries or demyelinating disorders. “I see families whose entire family has struggled with this for potentially generations,” she says. Up to 50% of adults with ADHD and half of adults with developmental dyslexia may also have auditory processing issues and there is also crossover with autism, she adds.
Locked in the basement
In her TEDx talk, she tells her horrific story of growing up in America and being locked in the basement by her father and step-mother from age 13 to 17, only allowed out to attend school as punishment for “not being able to focus”. Frightened and ashamed, she was told she was dumb and not smart enough for university.
“I tell my story because I know what it feels like to be set aside, to be dismissed, to be imprisoned and I also know how it feels to be set free,” she says. Her story of entrapment mirrors that of the patient being imprisoned by APD and set free with treatment.
“The academic issues I had growing up, listening difficulties, trouble following instructions, I looked like I was not paying attention but I was overwhelmed trying to listen. I remember feeling lost and confused, something I often see in my paediatric patients,” Dr Alexander recalls. “Although I have never been formally assessed for APD myself, I believe my difficulties understanding what I heard put barriers in front of my learning but I loved school, I loved the times when I was out of the basement; that was the best ever, I was upstairs and I wasn’t alone.”
After being rescued by a group of brave girls and strong women from her school, and a kind foster mum who reconnected her with her mother, she blossomed personally and academically. However, at university, she often fell asleep in lectures, tired from listening, and had to record lessons and listen three times to understand. Then, 20 years ago, in April 2004, while finishing her Bachelor’s degree in speech pathology, Dr Katz delivered a lecture on APD and changed her life. She felt like she was learning something she’d already known.
“That’s when I decided, this is what I’m going to do,” she recalls. “I walked up to Jack and said, ‘I’ve got to see how you test for and treat it; I need to see it with my own two eyes.’ He said to go to his clinic next week for an hour so I went and watched him then asked if I could return next week, and it continued.”
She worked with Dr Katz from 2004 to 2012, building knowledge and expertise in APD, while graduating from the University of Kansas with a Doctor of Audiology. After observing him providing treatment, she could understand lectures immediately. “I didn’t realise APD had affected my own life until it was resolved,” she says.
“Jack’s now 90, and we’re still working together online for adult clients with auditory brainstem implants. (ABIs). Only 10% of people with ABIs have open-set word recognition and can understand speech in quiet but so far, all three of ours have.”
Dr Alexander says there is potential for auditory training to extend to hearing aid users and ‘brain fog’ patients, as her research suggests post COVID-19 brain fog could be related to APD. She has, however, had a few clients for whom the therapy did not provide substantial benefit but these were largely clients not engaged in the process, she says.
She has done auditory training at her daughter’s primary school, deemed ‘listening lessons’ that helped children improve auditory skills and taught teachers how to recognise APD. “An audiologist in her 60s came up to me after a presentation and said she didn’t know we could treat APD, which she reported having had all her life, so I treated her and she had amazing results. There are so many more people we could help,” she says.
Another case, an American doctor who reported COVID brain fog, saw ENT surgeons and audiologists but was told to meditate and ‘listen harder’. His mental health was suffering but he found it mind-blowing when he was finally diagnosed and treated for APD.
“APD is the ADHD of the future; years ago, ADHD was not talked about, and people thought not much could be done. Now, this is in that sphere,” she adds. “With APD, the clinician often has the denial, not the client; the patient want answers and are disappointed when the audiologist says there’s nothing wrong with their hearing. So it’s refreshing for an audiologist to hear from a client, ‘I have problems. I want to do something about this’.”
The institute has courses to train audiologists and speech therapists in APD diagnosis and treatment and a map to locate practitioners and online auditory training for patients. The apdsupport.com website has free resources including letters to give teachers, coaches, parents, and employers which explain APD and give tips as having supportive and understanding people around them is life-changing.
“There was a misunderstanding in audiology that there weren’t tests to assess auditory processing in children under seven but there are many tools now for children aged four and older,” she says. “We have tools to measure auditory skills in infants and a new ‘Frequency Following Response’ protocol from Dr Nina Kraus can measure auditory processing abilities in infants.
“Early intervention is so important. To quote speech pathologist Maryann Kaminsky, ‘If we know that auditory skills underpin early literacy, and if we want all children to read by seven years of age, why would we wait until then to assess them?” Dr Alexander says.
