When your clinical experience is dismissed as anecdote, your advocacy is called manipulation, and your identity is questioned altogether.

Recently, I responded to a professional conversation about auditory processing disorder, sparked by a research summary questioning whether APD can be reliably diagnosed or meaningfully separated from ADHD, language disorder, and other conditions. I acknowledged the limitations of our current tests. I’ve said many times that we don’t have a gold standard. But I also shared why I still believe the diagnosis matters, and why waiting for perfect tools while kids continue to struggle is not a neutral choice.

The response I got wasn’t just disagreement. I was accused of misrepresenting the field, of relying on “anecdata,” of promoting my own agenda. Someone even suggested I wasn’t a real person.

You might wonder why I keep engaging in these conversations when they so often become heated. The answer is simple. If I don’t advocate, who will? There’s that old warning: First they came for one group, then another, and no one spoke up until it was too late. I’m not comparing our situation directly, but the lesson still holds. Silence, even well-intentioned silence, allows harm to grow. I’m not willing to step aside while kids with auditory processing challenges get left behind just because the science hasn’t caught up yet.

I also recognize that I’m in a unique position. I don’t work for a hospital, a doctor’s office, a school system, or a corporation. I don’t have to navigate institutional politics or answer to colleagues who don’t understand what I do. I run my own practice. I employ myself. That means I can speak more openly than many others can. And because I have that freedom, I feel an obligation to use it for the kids, for the families, and for the professionals who do see the problem but can’t risk saying so.

This is also the only population I work with. I specialize in people who have normal hearing but experience difficulty processing, tolerating, or organizing sound - people with auditory processing disorder, tinnitus, hyperacusis, misophonia, and related neurodivergent listening profiles. I work with families and individuals all across the country, and I consult with professionals and families around the world. That gives me a wide lens on the patterns, the gaps, and the long-term consequences when these challenges are dismissed or misunderstood.

Because I focus only on this population, and because of the way my brain works, I notice patterns that others might miss. I see the systemic weaknesses, on both the testing and treatment side, and I understand why so many children are falling through the cracks. I can hold more than one perspective at once, and I’m not afraid to name the parts that aren’t working. Silence is what got us here. I’d rather speak.

I do understand where the concerns about testing come from. I’ve said it myself, the current tools are flawed, the diagnostic boundaries are inconsistent, and there is no perfect gold standard. But that’s what we have right now. And refusing to acknowledge auditory processing disorder just because our testing isn’t perfect doesn’t make the problem go away. It just makes the kids facing it more invisible.

So here’s my full response. It’s long. It’s layered. It’s grounded in clinical practice, in listening to families, and in being neurodivergent myself. I’m not writing this to defend a label. I’m writing this because kids are being dismissed every day by professionals who are uncomfortable naming what they cannot fully measure.

Full Response:

I honestly hesitated to respond. It’s been hard seeing people question whether I’m even a real person. I know my communication style is different. I’m autistic, and the way I make sense of complex issues is by offering full context. That’s not just how I write. It’s how I think. I also don’t just work with this population. I’ve been running a support group for families navigating APD and related challenges for the past seven years. That group now has nearly 13,000 members. I’ve heard firsthand how often these kids are misunderstood, dismissed, or told their struggles aren’t real.

I actually don’t think we’re that far apart. I agree there’s no gold standard for diagnosing APD. The tests are inconsistent and often inadequate. Depending on the battery used, diagnosis rates can range from as low as 7.3 percent to as high as 96 percent (Wilson and Arnott, 2013). That’s not just academic variability. That’s a clinical crisis. Even the LiSN-S, which I consider one of the better tools available, only assesses spatial hearing in a fixed forward-facing configuration. It doesn’t reflect what kids experience in everyday environments where competing noise, shifting sources, and real-world complexity are constant.

Given that reality, I can absolutely see why people question the diagnosis. It’s easy to dismiss APD as a valid category when the current diagnostic process is so fragmented. But that doesn’t mean the underlying issue isn’t real. It means we haven’t built a system that captures it well. The doubt isn’t coming from nowhere. It’s a reflection of the field’s own diagnostic gaps. And that’s why so many kids are getting missed.

What I focus on now is building a more functional framework around what we can observe. For many patients, I use a combination of structured and informal measures, starting with a listening effort and fatigue questionnaire that we include in every intake. It’s a modified blend of tools like the Vanderbilt Fatigue Scale and the Buffalo Model interview. We also discuss real-life listening breakdowns, academic fatigue, and how the child functions across environments. I’m in the process of adding acceptable noise level testing and structured Likert-style ratings. I’m exploring dual-task paradigms and have been in contact with researchers about the future clinical use of physiological measures like pupillometry and auricular EMG. Most practices, including mine, don’t have access to late latency waveform testing, but that doesn’t mean we’re stuck. Structured treatment trials and subjective charting of real-world gains can still provide meaningful data.

Right now, the most effective support I can offer is a structured treatment trial using low-gain hearing aids, especially when paired with customizable FM systems. These trials are collaborative and child-led. We track comfort, fatigue, listening stamina, participation, and overall regulation. If there’s no benefit, families can walk away without penalty. But over 70 percent continue, because the change is clear to them, their child, and their school team. I do not support using FM systems by themselves, because they are not customizable and do not allow for fine-tuned adjustment of gain, loudness discomfort, or real-world spatial cues. When used alone, they often fail to meet the sensory or cognitive needs of the child. But when integrated with low-gain hearing aids, they can dramatically improve access to the teacher’s voice while still allowing the child to monitor their environment and self-advocate effectively. Research has even shown that FM systems can support neuroplasticity and listening gains in children with dyslexia, even outside of traditional hearing loss models (Hornickel et al., 2012).

I understand the argument that professionals are capable of handling nuance and that it’s important not to shy away from diagnostic uncertainty. But in practice, the nuance often gets lost. Teams are increasingly hesitant to evaluate or intervene unless a diagnosis is airtight. And that’s where we differ. I don’t believe the TISLP article was written in bad faith. But I’ve already seen its tone reflected in real-world decisions that lead to inaction. That’s the cost I’m concerned about. Not theoretical misuse. Actual missed support.

And honestly, I shouldn’t have to bring up my own neurodivergence to be taken seriously. But if the choice is between being dismissed as AI or being transparent about how I think and communicate, I’ll take the risk. My autism helps me see patterns, hold nuance, and connect information across systems. That’s not a weakness. It’s the reason I’ve been able to support families who were told for years that nothing was wrong. The fact that some people would rather accuse me of being a machine than engage with the full discussion says a lot about the discomfort with complexity. I’m not here to confuse anyone. I’m here to make sure these kids are not forgotten.

This isn’t about defending a label. It’s about making sure the listening piece isn’t ignored just because it’s hard to quantify. We don’t need to wait for perfect tests to offer support. We just need to be willing to look beyond the checklist, ask the right questions, and trust what families are seeing every day.

It also seems to me that if someone isn’t willing to read a full argument with context, then maybe they aren’t really engaging with the question at all. Maybe they’re looking for a quick fix, or something that confirms what they already believed, without taking time to consider a different perspective. I try to stay flexible. I’m always open to being wrong or adjusting my thinking. And maybe it was foolish to write something this long in a space where so many people expect brevity. Maybe being uncloseted about the way my brain works will trigger another attack from the peanut gallery. But to be honest, I’m getting past the point of caring.

This isn’t about speech-language pathologists versus audiologists. It’s not about territory or credentials or whose framework gets the last word. It’s about the kids. The ones who don’t have access. The ones who are getting missed. The ones who are falling apart in classrooms where nobody even realizes they’re struggling to hear. The constant territory wars are only making it worse for the kids who are affected by it every single day of their lives, not just during a scheduled therapy session.

That’s who I’m writing for. And if my words are too much, I hope someone else will say what I’m trying to say in a way others can hear. Because the silence around this isn’t helping anyone.

And go ahead and call me a bot if you want. I’d love to see a bot actually write like I do.

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References

Hornickel, J., Zecker, S., Bradlow, A., & Kraus, N. (2012). Assistive listening devices drive neuroplasticity in children with dyslexia. Proceedings of the National Academy of Sciences, 109(41), 16731–16736.

Iliadou, V., Ptok, M., Grech, H., Pedersen, E. R., Brechmann, A., Deggouj, N., … & Bamiou, D. E. (2018). A European perspective on auditory processing disorder. Frontiers in Neurology, 9, 622.

Wilson, W. J., & Arnott, W. (2013). Using different criteria to diagnose auditory processing disorder: How big a difference does it make? Journal of Speech, Language, and Hearing Research, 56(1), 63–70.