One of the hardest parts of living with Autism and ADHD isn’t just the internal battles—it’s the constant struggle to be heard and understood by the world around us.

Sometimes I feel like I’m doing everything I can to communicate—choosing my words carefully, breaking things down, even repeating myself—and still the message doesn’t land the way I intended. It’s like sending out a signal only to have it scrambled before it reaches the receiver. People nod, smile, or brush it off, but I can tell they don’t really get what I’m saying, or worse, they think they do but completely miss the heart of it.

This shows up everywhere—in conversations with friends, with family, and especially with doctors. Each encounter carries its own set of expectations and challenges. The stakes feel particularly high in medical settings, where clarity is crucial, but misunderstanding can lead to inappropriate treatment or a lack of support. There’s a sense of urgency in conveying my truth because my well-being depends on it.

When I meet a new doctor, I often go in prepared. I know my symptoms, my diagnoses, and my history. I’ve learned to advocate for myself because I have to. It feels empowering to walk in with knowledge, yet the moment I start to speak, there’s an internal battle that rages within. I can see their eyes glaze over slightly as I delve into the details of my situation. Despite my careful articulation, I often feel as though my words get boiled down, minimized, or misunderstood. Sometimes they’re dismissed entirely, which feels extraordinarily frustrating because I’m not just trying to communicate about small talk; I’m trying to explain my health, my pain, my reality.

Often I am seen as a drug seeker or a hypochondriac because I recite my previous diagnoses—which, to be fair, make no sense when you put them together on paper. For most of my doctors, it’s like reading a medical riddle that doesn’t add up, filled with seemingly unrelated symptoms and conditions that perplex even the most experienced practitioners. But that’s my reality, a complex chart of health challenges that intertwine in ways not immediately visible. When I bring this history to a new doctor, they sometimes look at me like I’ve suddenly sprouted three heads, or worse, like I’m lying just to get attention, their expressions shifting to skepticism as they sift through my medical history. And when I try to explain it in the way another doctor explained it to me, they look vexed or irritated—because they’ve never seen a case presented like mine before, one that challenges the conventional narratives written in their textbooks. Instead of curiosity or compassion, I get ignorance, doubt, or outright dismissal, which makes navigating my health feel like running a gauntlet where I must defend my experiences and fight for the validation and understanding I so desperately need.

Living with multiple chronic conditions can often feel like being trapped in a loop of repeating yourself, defending yourself, and still not being taken seriously. I can’t tell you how many times I’ve walked into a doctor’s office, carefully recited my long list of previous diagnoses, and watched their face shift from curiosity to disbelief. Often I am seen as a drug seeker or a hypochondriac because I recite off my previous diagnoses—which, admittedly, don’t make sense when they’re stacked together. But when compounded, they form the confusing, messy truth of my health. Instead of listening, I’m met with looks like I’ve grown three heads, or worse, like I must be lying to get attention.

When I try to explain things the way they were explained to me, the reaction is often annoyance or dismissal. Many doctors have never seen a case presented like mine before, so their responses come off ignorant at best and insulting at worst. And for me, that hits especially hard because I hate mind-altering drugs. I hate the feeling of being out of control, of not being fully present in my own body or mind. So when a doctor looks at me with that tone of suspicion—as if I’m there for a prescription or to be coddled—it makes me very upset and angry. It’s not about drugs. It’s about wanting answers, support, and relief that respects my boundaries and my lived experience.

Family isn’t always easier, either. Explaining a new diagnosis or even just sharing that I might have something feels like climbing uphill with weights tied to my ankles. They hear the words, but often not the meaning. Instead of listening, some jump to assumptions or judgments, or they minimize what I’ve said because it doesn’t fit their idea of me. And the worst part is, I end up questioning myself—Did I not explain it right? Did I miss something? Am I just not making sense? This cycle of self-doubt is particularly brutal. It creates a barrier to open communication, a space where I hesitate to share my thoughts even further.

Because with Autism and ADHD, communication transcends just being about the words we use. It’s about the effort it takes to form those words, the courage it takes to share them, and the hope that someone will actually listen. Each exchange feels like a delicate dance, where I’m constantly gauging the reactions of the people around me. Are they engaged? Are they trying? Or is their mind wandering elsewhere?

How We Can Work Toward Being Heard

That being said, I’ve learned (and am still learning) that sometimes the only thing I can control in these moments is how I respond. A few strategies that have helped:

• Breathing techniques. When I feel that wave of frustration rising—jaw tightening, chest clenching—I pause and take a deep breath in for 4 counts, hold for 4, release for 6. It grounds me enough to keep speaking without breaking down.
• Prepared notes. Having a concise, bullet-point list of my most pressing concerns keeps me focused and prevents me from spiraling into defending every part of my medical history.
• Reframing dismissal. When I feel brushed off, I try to remind myself: their reaction isn’t proof I’m wrong—it’s proof they’re not listening. This helps me push past the sting and ask again, clearly and firmly, for what I need.
• Requesting clarification. Instead of shrinking back, I now ask, “Can you explain why you feel that way?” or “Can you tell me what information you need from me to take this further?” It shifts some accountability back to the doctor.

It’s not perfect, and it doesn’t erase the pain of being misunderstood. But it gives me a way to move forward without carrying as much of that anger or exhaustion with me afterward.

The Bottom Line

The truth is, we deserve to be heard. Fully. Without being dismissed or forced into someone else’s narrative. Communication shouldn’t feel like a battle every time, but too often it does. We want to connect on a deeper level, to share our experiences not just verbally but through genuine understanding. When that connection is faulty, it leaves a void of isolation that can be incredibly difficult to navigate.

So here’s what I want to say to anyone else navigating this: You’re trying—sometimes harder than most people realize—to connect, to share, to be understood. If people don’t get it, that doesn’t mean your message wasn’t valid. It means the world still has work to do in learning how to listen. There’s much to be gained from the practice of patience and the willingness to truly engage with one another, to peel back layers of misunderstanding.

And to the doctors, the family members, the friends: please remember that communication is a two-way street. Listening deeply—without assumptions, without judgment, without cutting someone off—is just as important as speaking. When you take the time to really hear us, you give us more than just understanding. You give us dignity and the acknowledgment that we matter. In those moments of genuine connection, hope flourishes. Together, we can dismantle the barriers to open dialogue and create an environment where everyone’s voice is valued and understood.

Much love and many blessings,
Mrs. B

---