# 40 - The Body Keeps Asking

Why do so many late-diagnosed autistic women seem to get sick so often?

In this deeply personal episode of Quietly Autistic at Last, Dr. Allison Sucamele explores the connection between chronic stress, masking, burnout, nervous system overload, and physical health. Drawing from both lived experience and the stories of countless late-diagnosed autistic women, she reflects on the exhaustion of constantly adapting, the pain of being superficially accommodated rather than truly understood, and the toll of advocating for needs that often go unmet.

This episode examines the difference between functioning and thriving, the grief of realizing how often support was symbolic rather than substantive, and the ways our bodies sometimes speak the truth when our minds can no longer carry the burden alone.

If you've ever felt unheard, dismissed, or exhausted from proving your reality to others, this conversation is for you.

Sometimes the body keeps asking the questions we've spent a lifetime trying not to hear.

Disclaimer

The experiences shared in this episode reflect my personal journey as a late-diagnosed autistic woman and are offered for educational and reflective purposes only. Autism is a spectrum, and every autistic experience is unique and valid. Not every autistic person will relate to the topics discussed, and individual experiences, strengths, challenges, and support needs can vary significantly.

This podcast is not intended to diagnose, treat, or replace professional medical, psychological, educational, or legal advice. If you have concerns about your health, mental health, or well-being, please consult a qualified professional.

If you are experiencing a mental health crisis, emotional distress, or thoughts of self-harm, please contact the 988 Suicide & Crisis Lifeline by calling or texting 988 (United States) or reach out to your local emergency services or crisis support resource in your area.

For additional resources, episode updates, and community discussions, follow Quietly Autistic at Last Podcast on Instagram:

📷 @quietlyautisticatlastpodcast

Thank you for listening and for honoring your own unique neurodivergent journey.

Transcript

0:00

Welcome back to Quietly Autistic at Last. I'm your host, Dr. Allison Sukamelli, and today I want to talk about something many late-diagnosed autistic women seem to recognize immediately when it's finally spoken out loud. Why do so many of us seem to get sick so often? Now, before we begin, it's important to say that every autistic experience is different. Not every autistic person struggles with frequent illnesses, and there are many reasons someone might experience health challenges. But among late diagnosed autistic women, especially, there is a story that appears again and again: a story of exhaustion, a story of pushing through, a story of not being heard, and eventually a story told by the body itself. And I have to apologize to my listeners this week as I am living and breathing this week's topic and feeling quite a bit under the weather as we speak, no doubt a reflection of feeling like, while trying to advocate for myself, that all I have been doing is yelling into a void. Not literally, of course, but expressing my needs just to be made to feel as if my late diagnosis is not valid, and feeling like I have to constantly prove, which I won't do, but constantly prove I am quote-unquote autistic enough to receive any sort of accommodation. While the snickers and the voices of my coworkers carry, and I can hear their doubt and ridicule from across the room. It's very invalidating and adds to the struggle that already exists. Many of us spent decades learning how to override our own signals to not appear overwhelmed or save it for when we are in private and be certain not to make it a problem for anyone else. And over time, this creates an interesting paradox. The world begins to see us as highly capable because we're functioning, but as I've mentioned in prior episodes, functioning and thriving are not the same thing. And many late diagnosed autistic women become experts at appearing fine while carrying enormous invisible burdens. You know, the sensory overload, the masking, the social calculations, the constant self-monitoring, the effort of translating ourselves into something more acceptable. And often, when we finally communicate our needs, we encounter something that can be difficult to explain. We aren't always ignored, sometimes we're appeased. And I think this just happened to me this week, resulting in my now being sick. My weekend, my recovery from the overstimulation was absolutely blown, just to be thrown right back into the messy mix on Monday with nothing changing, no resolution, just more overwhelm without relief in sight. And sometimes we're superficially accommodated. Sometimes people nod, smile, say all the right words, and then continue doing exactly what they were already doing. The accommodation exists on paper, the understanding exists in theory, but the reality remains unchanged. And over time, that experience can become deeply discouraging because being unheard doesn't always sound like no. Sometimes it sounds like of course, and then nothing changes. Sometimes it sounds like we support you, and then you're still expected to function exactly as before. Sometimes it sounds like we understand, while your nervous system quietly screams that they do not. The result is that many autistic women learn another lesson. If speaking up doesn't create meaningful change, why speak up at all? Exactly. Why interview over and over within the same company in hopes that a new position will relieve you from a hostile work environment? I've done this about seven times now myself over the course of several years, but no change, being given a false sense of hope, only to lose it again. It of course being hope. And the only option, other than quitting, which isn't plausible when no one is taking care of you but you, the only option is to continue adapting, continue carrying the overwhelm and overstimulation and all the residue of the prior decades, not just days, months, or years, but decades. We continue absorbing until eventually the body starts asking questions. The mind has been avoiding. Questions like, how long can we sustain this? How much more can we carry? When do we get to rest? And Friday, my body said, Yep, we're done with this. This is too much. But yet, my mind says we have to push through and push on just like we always have. And researchers have increasingly recognized higher rates of chronic stress, burnout, anxiety, sleep difficulties, autoimmune conditions, gastrointestinal issues, and chronic fatigue among autistic populations. And while the exact relationships are complex, one thing seems clear. The nervous system and the body are not separate conversations. They are the same conversation happening in different languages. Sometimes the mind says, I'm fine, and the body says, no, you're not. Sometimes the mind says, I can handle it, and the body says, at what cost? And for many late diagnosed women, diagnosis doesn't magically solve these challenges, but it can change the questions we ask. Instead of what's wrong with me, we begin asking, what has my body been trying to tell me? Instead of why can't I keep up? We ask, why was I expected to keep up at the expense of myself? And instead of constantly forcing ourselves to adapt, we slowly begin exploring what genuine accommodation actually looks like. Not performative understanding, not symbolic support like a check mark on a paper, not being tolerated, but being genuinely heard. Because real accommodation is not simply making space for someone's existence. It's allowing their reality to matter, and perhaps that's one of the deepest griefs of late diagnosis. Realizing how often you were told you were heard when you actually weren't, and how often you were reassured instead of understood, and how often you were accommodated in appearance, but not in substance. Yet there is hope here too because once you begin recognizing the difference, it becomes harder to settle for less. You begin listening to your body sooner, you begin trusting your perceptions more, you begin noticing when support is real and when it's merely symbolic. And little by little you start building a life that doesn't require your nervous system to carry quite so much alone. Okay, so there you have it. Thank you for joining me for this reflection. And if this episode resonated with you, please remember your needs are not too much. Your exhaustion is not a character flaw, and your body is not betraying you. It may simply be telling the truth that nobody else was willing to hear. Until next time, I'm Dr. Allison Sukamelli. Take care of yourselves and be gentle with your nervous systems. I'm going to nurture mind back to health and be back next week with another episode for you. Be well, and I'll see you then.