My Voice

It was in the middle of my story that a lady once said to me “I don’t know about your daughter, but you are definitely autistic!” I was to find out how pivotal that that statement was to become. When I finally got my Autism diagnosis five years later, it came with a curious one – Alexithymia. Alexithymia still turns heads, or gets me quizzical glances, but in summary, it’s simply explained as emotional blindness. Unfortunately, due to the extremity to which I experience it, I have regularly started to see a pattern of behaviour “show up” in my life. The following is eight stories of my “voice” being stolen or me being “silenced”. And ultimately what I’m doing to reclaim it!

Imagine someone walking into your house and deciding your favorite chair is actually a pile of laundry. For a decade, my ex husband and my parents did that to my very name. By refusing to call me “Tracey” and insisting on “Stacey-Jane,” they weren’t just being traditional; they were performing a daily act of “Identity Erasure.”

To an AuDHD brain, your name is your anchor, the one thing that keeps you grounded when the world feels like it’s spinning too fast. By ignoring my voice when I said, “This is who I am,” they were telling me that I didn’t matter. Reclaiming my name in 2019 wasn’t just about filling out some paperwork (I put in a legal change of name); it was a choice to recover. It was the first time in years I heard my own voice echo back at me with authority – and an authority I chose. I wasn’t just a character in their story anymore; I was the author of mine. Legally choosing my name was the moment I stopped being “theirs” and started being “mine.”

For someone living with MS, where your body can feel like it’s betraying you with every flare or “hug,” having a name that belongs entirely to you is a clinical necessity. It’s the “Safe Base” I return to when the brain-fog gets thick. And now I get to proclaim that choice with every phone call, and every conversation. I do catch myself sometimes apologising for “making a scene” about my name, but then I remember how long it was erased for and what I had to do to get it back.

I was employed in a Disability Support Organisation in 2022-23, which ultimately bullied me into silence, using my very disability as the excuse. I am still recovering from this one. If you want to understand what it feels like to have your voice stolen, look at that boardroom table in February 2023. My employer, who said all the right things in front of an audience, didn’t just want to talk to me; she wanted to isolate me. In an inappropriate disciplinary meeting, she forced my support person and advocate, Nancy, to wait outside, effectively stripped me of my “assistive technology” for communication.

For a person with AuDHD and extreme Alexithymia, an advocate isn’t a luxury—they are the bridge between a racing brain and a confusing world. Making Nancy sit in the hallway because she spoke, and then telling me that the only way the continue the meeting was to have Nancy out of the meeting was like taking away a wheelchair and then asking me why I wasn’t standing up for myself!

Once I was alone in that room, the “Silence Rule” took over. My brain did exactly what it’s programmed to do under extreme threat: it went into a total Freeze response. While management lobbed accusations at me, my internal “Performance Part” was smiling and nodding just to stay safe, while my actual voice was locked in a basement somewhere deep inside. They knew that without my advocate to translate the “corporate-speak” into something my neuro-spicy brain could process, I would be defenseless. They didn’t want a conversation; they wanted a monologue.

This wasn’t just a bad meeting; it was a strategic silencing. They relied on my disabilities—my inability to name my feelings in the moment and my tendency to shut down under pressure—to ensure I wouldn’t fight back. It was a literal theft of my right to be heard. By the time I walked out of that room, I felt invisible. It took months of listening back to the recordings and talking to the Psychologist to realize that I wasn’t the one who failed in that room – their processes made certain I could not be heard!

In the world of the NDIS, my home is supposed to be my sanctuary, the one place where I can drop the “mask” and just exist. But my employer, decided that my sanctuary was actually their HR department. They took my voice as a vulnerable NDIS participant—the moments where I was venting, crying, or just being “messy” in my own home—and turned it into a “Sword” to use against me as an employee. They took my truth as a disabled person and reframed it as “professional misconduct.” It’s the ultimate betrayal: turning your safety into your liability.

This conflation of roles is a special kind of “crazy-making.” Imagine trying to regulate your nervous system after a hard day, only to realize that every word you say to your support worker (who happens to be the boss’s daughter!) is being logged as a reason to fire you. They stole the safety of my private voice. They made me feel like I had to “perform” even in my own living room, effectively erasing the line between my life and my job. Yes, it was messy, as I was both an Employee and a Participant with the one Company, but the responsibility for making those lines clear was theirs, not mine. When a provider uses your disability as a weapon, they aren’t just a bad employer; they are a threat to your autonomy.

The WorkCover Regulator eventually saw through it, calling their actions “unreasonable,” but the damage was already done. They had turned my “Shield”—my right to support and vulnerability—into a weapon. And if I’m honest, I’m still paying the price. It takes a lot of work to reclaim the idea that I’m allowed to have a private voice that doesn’t have to be “professional” 24/7.

Now, I just have to remind myself that my vulnerability is a strength, but only when it’s in the hands of people who actually respect my boundaries – it’s a tough gig!

Silence isn’t always golden; sometimes it’s a lead weight. Back in 2018, my recordings captured a chilling pattern of what I call “Weaponized Silence.” I would be trying to have a basic human conversation about our daughter or the household, and my ex husband would respond with… nothing. Just the bright, happy theme song of ABC Kids playing in the background while he sat there like a stone wall. It’s a form of psychological erasure that makes you feel like you’re screaming into a vacuum. If he didn’t answer, then in his mind, I didn’t exist.

Then there was “The Glare.” When I’d ask for something simple, like help with J’s bath because my MS fatigue was hitting hard, he wouldn’t say “no”—he’d just give me that look. It was a visual “shut up.” He’d follow it with a dismissive “I’ll talk after dinner,” which was code for “I’m going to control the timing of your voice until you’re too tired to use it.” By delaying and denying the conversation, he made sure that the only voice that mattered in our home was the one that wasn’t speaking.

To a cPTSD brain, that kind of silence is terrifying. It forces you to fill the quiet with your own worst-case scenarios and “scripts” to try and fix the problem. You end up working twice as hard to be heard, which only plays into the “crazy-making” dynamic. He knew that by staying silent, he stayed in control. Reclaiming my voice from that silence meant realizing that I don’t need his permission to speak my truth. My recordings from that time are now my evidence—they are the sound of me refusing to be silenced by his vacuum.

In 2020, I thought the legal system would be my megaphone. I had the recordings, the evidence, and the history of domestic violence all ready to go. But when the Family Reporter sat down to write his report, he didn’t just miss the point—he erased it. He explicitly ignored the documented history of abuse and favored the “calm” version of my ex over my “dysregulated” truth. It was systemic gaslighting at the highest level. The expert whose job it was to hear me chose to hit the “mute” button on my trauma instead.

This failure forced me into a “tactical retreat.” My lawyer had to pivot to mediation just to keep my daughter and I safe, because the system had effectively told us that our voice had a value of zero. It’s a heartbreaking realization: you can speak the truth with all the evidence in the world, but if the person holding the pen refuses to write it down, you are still invisible. The legal system “stole” my voice and handed the microphone back to the person who had spent years trying to silence me. Thankfully the Law changed in 2024, and we don’t see as much of this erasure now.

Sometimes the theft of your voice happens in the smallest moments. In 2021, a taxi driver made a casual, inappropriate comment about giving my daughter a sibling, and I was left “genuinely speechless.” It sounds like a small thing, but for someone with cPTSD and Disassociative Identity Disorder that is programmed to stay safe, that silence was a “Freeze” response in action.

My brain knew a boundary had been crossed, but my voice was stuck in my throat, paralyzed by the need to keep the social interaction “pleasant.”

This is the hidden cost of “Masking.” Even when we know we should say “Enough!” or “That’s inappropriate,” the AuDHD mask often smiles and nods because it’s the path of least resistance. We “exist” in those moments instead of “living” our truth. Being speechless wasn’t about being shy; it was about the DID taking over to protect me from a perceived threat. It’s a reminder that my voice can still be “stolen” by my own survival instincts if I’m not careful.

I wrote about that incident because it was a “Speed Bump” moment for me. If I can’t speak up to a taxi driver, how can I speak up to the NDIS? Acknowledging those speechless moments is how I train my voice to stay online. Now, when I feel that “Freeze” coming on, I try to remind my brain: “We aren’t in 1984 anymore. We are allowed to have a voice, even if it’s loud, even if it’s uncomfortable.”

The most terrifying way to steal a mother’s voice is to use her child as a hostage. In November 2018, as I was trying to leave for an ASD support group, my daughter’s father looked at me and said, “I might shake J as soon as you leave.” It was a “Terror-Gag” of the highest order. He knew that by saying those words, he was ensuring my silence. If I left, I’d be too terrified to speak to anyone at the group; if I stayed, he won by keeping me isolated. He used my love for my daughter to lock my jaw shut.

This is the “Sword” at its most lethal. He wasn’t just threatening a child; he was threatening my sanity. He knew that my AuDHD brain would loop that threat over and over, making it impossible for me to focus on anything else. He stole my ability to speak up for help because the “price” of speaking was the safety of my child. It’s a Catch-22 that leaves you feeling like you’re dying whether you speak or stay silent. It’s the ultimate act of emotional terrorism.

But here’s the thing about a voice—it can be recorded even when it can’t be heard. I caught that threat on a recording, and that recording became the “Shield” I used to eventually get us away from him. He tried to use fear to ensure my silence, but he didn’t realize that my “over-thinking” brain was already building a vault of evidence. My voice might have been shaking in that car, but it was still being documented. Today, that threat is no longer a gag—it’s a permanent entry in my records that proves why we are safe now.

The NDIS has a way of stealing your voice through bureaucracy that is just as exhausting as any individual bully. Over the last four years, I’ve been through ten Support Coordinators. Every time a new one starts, I’m forced to perform the “Trauma Recital”—retelling the story of the 904 days, the MS, the bullying, and my daughters complex needs just to get them “onboarded.” It’s the “Theft of Momentum.” You spend all your energy “starting over” instead of “moving forward,” until you’re too tired to tell the full truth anymore.

This constant churn silences you through “Trauma Fatigue.” Eventually, you start giving the “abbreviated version” of your life because it’s too painful to open the whole vault for someone who might be gone in three months. Your complex, nuanced life is replaced by “Case Notes” written by people who barely know you. The system stops hearing your voice and starts hearing the voice of a “standardized participant.” You become a “complex case” instead of a person with a history and a future.

For me to “unpack” my complex history of losing my voice, I have been building a “Life Library” in an a Large Language Model (more commonly known as AI). For those of us with such a messy story, and being as spicy as what my brain is, to have all this information in one “portal” is so critical. I refuse to let the “Revolving Door” of coordinators erase my continuity. I am now the one who holds the thread from 1975 to 2026. My voice isn’t a “recital” for the NDIS to judge; it’s a record for me to own. By documenting these 8 points, I’m making sure that the next time a coordinator asks, “So, tell me about your situation,” I can just hand them the Shield and say, “Read this. My voice is already on the page.” But if I’m truly honest, it’s also helping me on the recovery journey, to one day tell the story of me. 🙂