Allies in Care - Supporting Families of Autistic Patients

Jock

Welcome to Episode Seven of our ASD mini-series, *Our Allies in Healthcare*.

Jack

Yes this podcast is all about equipping healthcare professionals with the knowledge, and honestly, the empathy, needed to better support autistic patients and their families.

Jock

Absolutely. Today's episode is a really important one—it's about the allies within the system. The families, the carers, the ones working at the patient’s side day in and day out.

Jack

Right, they play such a critical role. It's not just about providing support in the moment but really being the constant and the advocates who bridge the gaps in care.

Jock

Exactly. And that's why we wanna shine a spotlight on their role and discuss ways we, as healthcare professionals, can collaborate with them more effectively.

Jack

It’s not just about working alongside families but learning from their insights, their experiences. Honestly they often know things that no test or medical history can capture.

Jock

Completely agree. So let's dive in and explore the ways we can strengthen that vital relationship.

Jack

Building on that idea of learning from families, one thing that really stands out is how they often act as translators—bridging that gap between what their loved one needs and how we, as healthcare professionals, can provide it.

Jock

Right, and not just translators in the sense of language, but translating emotions, behaviours, even nonverbal cues. It’s like they’ve got this unique insight that we don’t always see in the ED.

Jack

Absolutely. I mean, think about how, for someone on the spectrum, a certain behaviour might look to us—agitation, maybe—but for the family, they know it’s actually frustration or, or even just sensory overload.

Jock

Exactly. And without that context, those behaviours can be misinterpreted, which, well, can lead to care that, to be honest, doesn’t fully meet the patient’s needs.

Jack

And that’s the key isn’t it? Families bring this whole layer of information we wouldn’t have otherwise. It's like they’re filling in all the missing pieces of the puzzle.

Jock

Yeah and honestly I think we, as healthcare providers, underestimate just how much weight those families carry. They’re advocating, interpreting, and they’re doing it all while often juggling their own emotions.

Jack

It’s a lot! And I I think anyone listening who works in healthcare knows how easy it is to focus on the patient in front of you and forget the network of support standing right next to them.

Jock

Oh totally. And those networks—the mums, dads, siblings, carers—might actually be the best resource we've got when it comes to understanding what the patient really needs.

Jock

And when you think about it, those families that we rely on so much as a resource—they’re carrying so much weight aren’t they? I mean, by the time they even walk into the ED, they've already been through so much navigating care and advocating for their loved ones.

Jack

Exactly. And for many, it’s not their first rodeo. There’s often this long history of, challenging or even outright dismissive medical experiences. Families might’ve had to fight tooth and nail just to get their loved ones the care they need.

Jock

And think about what that does to someone—when you’re constantly the advocate, fighting at every step to be heard, to have their needs understood. That kind of pushback creates this armour. So by the time they arrive at the ED, it’s not really surprising if they seem defensive. It’s—it’s a survival mechanism.

Jack

And with good reason. There’s often this underlying fear isn’t there? They’re worried their autistic child—or partner—won’t get the care that’s really suited to them. That’s a lot of pressure to carry. And then on top of that, they’re probably exhausted. Just utterly worn down.

Jock

Yeah, because it’s not just about the advocacy—it's everything else they’re juggling. They’ve spent years, maybe their whole lives, shielding their loved ones from situations that might trigger sensory overload or, or meltdowns. Then they’re thrust into the chaos of an ED—bright lights, loud noises—it’s a minefield. They’re bracing for impact the entire time they’re here.

Jack

And we as medical professionals, might not recognize that immediately, right? We don’t always step back and think about how their defenses—they’re not directed at us personally—they’re shaped by, well, everything they've been through up to that point.

Jock

Exactly. Recognizing that perspective can completely change how we approach them. It’s not just about empathy, although that's vital—it’s about genuinely understanding where they’re coming from and why they might act the way they do.

Jack

And when we understand that—even just the smallest glimpse of what their reality looks like—it changes the whole dynamic. Because suddenly, it’s not just about us providing care for their loved one; it’s about creating a shared approach, together.

Jock

Thinking about how crucial it is to genuinely understand where families are coming from, one of the most common challenges we still encounter in emergency care is when input from families or carers gets overlooked.

Jack

It’s actually more common than you’d think.

Jock

It really is. And when you think about it, it’s, it’s so counterproductive. Families aren’t just offering opinions, they’ve got firsthand knowledge. They know exactly what their loved one needs, what triggers them, and what calms them down.

Jack

Right, and when we overlook that, it’s not just disrespectful—it can actually escalate things. If a carer says, “Hey, my child calms down with noise-cancelling headphones,” and we ignore that, we’re just, creating more tension, aren’t we?

Jock

Absolutely. And then frustration builds up—for everyone involved. Parents and carers—they know when they’re not being heard. And you know, when their input is dismissed, it’s—it’s like saying their experiences don’t matter. That’s a huge breach of trust.

Jack

And that frustration doesn’t just sit there; it feeds into resistance. Suddenly, we’re stuck in this cycle where they feel—what’s the word—unsupported? And then they’re less likely to collaborate with us moving forward.

Jock

Exactly. And it’s worth remembering that carers have often spent years—years—figuring out the best ways to manage difficult situations. Dismissing that is, well, a massive loss for everyone, the patient included.

Jack

Right, because at the end of the day their insight is the most direct line to understanding the patient’s unique needs. And honestly, it’s something we should be leveraging more, not less.

Jock

Completely. And when we don’t, the consequences ripple out. Not just in that one visit, but in how families perceive the healthcare system going forward too.

Jock

When we think about the frustration and mistrust that can come from families and carers feeling dismissed, it’s clear that improving our interactions starts with validating their concerns. It’s not just about listening—it’s about genuinely showing them that what they share is valued and taken seriously.

Jack

Right. And validation doesn’t mean you have to agree with everything they say. It’s more about letting them know you hear them, that you understand their perspective—what they’re feeling. It’s that connection.

Jock

Exactly. To be listened to is to be validated, and to be validated is to be seen. And really, isn’t that what we all want?

Jack

Absolutely. And the thing is, it’s not just about spoken words either. It’s your body language, your tone, even maintaining eye contact or nodding when they’re sharing their concerns. Those small details matter so much more than we sometimes realise.

Jock

Yeah and when you think about it, it’s not hard to imagine how many times these families might’ve felt ignored or dismissed before. I mean, how often have they heard things like, “Oh, he’ll calm down eventually,” or, “She’s just being difficult”? It completely undermines their reality.

Jack

Exactly, and dismissing that can send a very clear, and honestly damaging, message,it says, “Your perspective doesn’t matter here.” And well, that kind of message leaves a mark. It’s hard to forget, let alone forgive.

Jock

But on the flip side, when we take the time to validate—something as simple as, “I can see this must be really challenging for you all right now”—it can build trust. It shows them we’re on their side, and that opens the door to collaboration.

Jack

Exactly. And when families feel respected, they’re much more likely to work with us rather than feeling like they have to fight us every step of the way. That’s the kind of partnership we’re striving for, isn’t it?

Jock

Definitely. And you know, validation doesn’t—even take heaps of time. In the fast pace of the ED, something like, “I hear you and we’re going to do our best to help,” can still have a massive impact.

Jack

Absolutely. And the ripple effect of that—it’s huge. Not just for the families but for the staff too. A calmer environment makes it so much easier for everyone to focus on what really matters: getting care right for the patient.

Jock

Right. It’s almost like laying the foundation for better outcomes. And all it starts with? Showing families that their input isn’t just tolerated—it’s valued.

Jack

Exactly. Validation—it’s such a small gesture, but it’s got the power to completely reshape these interactions.

Jock

Building on that idea of validation, let’s consider a practical example. Picture this: It’s a busy afternoon in the emergency department. A mother arrives with her 10-year-old autistic son. He’s pacing back and forth in the waiting room, flapping his hands, humming loudly, and pulling at the sleeves of his hoodie. He hasn’t made eye contact with anyone since they arrived. He’s in pain — she suspects abdominal discomfort — but he can’t tell her exactly what’s wrong.They’ve already been waiting for over an hour. The noise, the bright lights, the constant movement — it’s all taking a toll. He’s gone from pacing to rocking. His hum is now a whine. She can see it — the signs are all there. He’s on the edge. She approaches the triage nurse again, trying to explain, ‘He’s escalating. I know it doesn’t look like much, but he’s about to lose control. We really need to be in a quieter space, or at least dim the lights.’The nurse nods, but says, ‘We’re doing our best you need to wait— it’s a full department today.’ She tries again with a different staff member, this time a junior doctor: ‘He won’t manage a full assessment if he tips over. Please — I just need someone to listen before it gets worse.’But from the team’s perspective, the boy isn’t screaming or hitting anyone — yet. So he’s not prioritised. Another ten minutes pass. Then a staff member walks in briskly and says, ‘Alright buddy, let’s check your tummy,’ and reaches toward him. No warning. No time to adjust.The boy shrieks, hits out, and bolts into the corner of the room, pulling down a curtain in the process. The mother, now distressed and defensive, raises her voice. ‘I told you he was escalating! I told three different people! You didn’t listen!’From the outside, it looks like she’s “losing it.” But what’s really happening is grief, fear, and frustration. She knows her child. She saw it coming. And despite trying to warn people — she wasn’t heard. Not truly. And now, she’s managing both a meltdown and a wave of guilt for not being able to prevent it.

Jack

This isn’t just a story about a missed cue — it’s a reflection of what happens when we undervalue caregiver insight. Families are the bridge to understanding autistic patients. They can translate behaviours that might otherwise be misunderstood. When they tell us something’s wrong, we need to trust them — even if it doesn’t look urgent through our usual clinical lens. It is. And you can really understand why situations like that escalate so quickly can’t you? The mother’s probably exhausted emotionally and physically, and when she feels dismissed...

Jock

It’s like a switch flips. And I think the first issue here was how the wait time was communicated. Telling someone in that state, "You’ll need to wait," without context or empathy—it’s not just a delay, it feels like rejection.

Jack

Exactly. A simple explanation, like, “We know this is urgent, and here’s what we’re doing to help,” could’ve been a game-changer. A moment of empathy could’ve stopped everything from spiraling out of control.

Jock

And it’s not just the words either. It’s tone, body language—all of it. A little compassion could’ve been the difference between conflict and collaboration.

Jack

And let’s not forget the child in all of this, right? He’s overwhelmed—bright lights, sounds, the chaos of the ED—it’s all magnified for him, isn’t it?

Jock

Completely. And his mum, she’s not just stressed out—she’s heartbroken. She’s watching him struggle and feeling helpless. That emotional weight, it’s immense. So when she meets indifference, it’s frustration that spills out.

Jack

Right. And here’s the thing; when carers like her lash out they’re not being “difficult.” They’re being protective. It looks like conflict, but really, it’s desperation.

Jock

Exactly. What should’ve happened is simple acknowledgment. “We see you. We see what you’re going through, and we’re here to help.” Meeting her where she’s at, not where we think she should be.

Jack

And practically, that could’ve been as easy as stepping aside, keeping voices calm, explaining what’s happening next. Just those basic steps to give her some feeling of control again.

Jock

Exactly. And it’s, you know, such a small investment early on to avoid a bigger conflict later. This didn’t have to escalate, it really didn’t.

Jack

No it didn’t. And that’s the takeaway here isn’t it? It’s not about picking up the pieces afterward—it’s about choosing the right approach in that first critical moment.

Jock

So let's look at the key take-ways from this episode. What really hits me is how vital it is to see families as partners rather than challenges. It all starts with empathy and acknowledgment, doesn’t it?

Jack

Absolutely. And I think we really need to embrace this idea that they’re not here to complicate things. Families, they’re the advocates! They know their loved ones better than anyone else in the room and that kind of insight—that’s invaluable.

Jock

Exactly. So instead of viewing their input as interference, it’s about seeing it as a resource. They’ve got perspective we can’t just you know, guess at. It’s something we need to actively seek out.

Jack

Right. And another key point here and I think this is massive—is recognizing the baggage they might bring in with them. A lot of families carry scars from past medical encounters that were dismissive or even downright harmful.

Jock

Totally. And if we ignore that trauma we’re not just missing part of the picture we’re dismissing their reality. And with that the trust just crumbles. Without trust... well where do we even start?

Jack

Exactly. Trust has to be the foundation for everything. And that brings us to another crucial takeaway: actually involving carers in the conversation. Asking for their input—it’s not just the polite thing to do, it’s practical. It leads to better outcomes.

Jock

A hundred percent. There’s such a difference when we say, “What can we do to help? What works for them?” It shows we’re listening and value their insight. And honestly, the payoff—better decisions better care—it’s undeniable.

Jack

Absolutely. And it’s not just about outcomes either. When we actively involve carers, it cuts down on tension. They feel seen, respected, and what you get in return is a smoother process for everyone involved.

Jock

So true. And that leads to the last takeaway—empathy. It’s such a simple thing but it’s so powerful. Just a bit of empathy in how we communicate or adjust the environment makes all the difference.

Jack

Totally. Reducing noise, dimming lights, or even just explaining what’s happening—it helps create a setting that’s less overwhelming. Those practical shifts, combined with clear and compassionate communication they have such an impact.

Jock

And it doesn’t have to be some massive effort. Sometimes it’s just the little things—reassuring them, using a calm voice, proving you’re listening. Those small gestures shift the entire dynamic.

Jack

Exactly. It’s about making the family feel like they’re part of the team, that their role and their emotions matter. Families as allies, being mindful of their past experiences, involving their input, and acting with empathy—those are the cornerstones of trust and better outcomes.

Jock

Building on that, when we recognise family members and carers as part of the team, we’re not just showing empathy—we're enhancing care. They’re such an integral part of the patient’s coping system, offering insights and support that make care safer, more compassionate, and ultimately more effective.

Jack

Absolutely. And I think, you know, what’s really stood out throughout this series is how those small, meaningful actions can make such a profound difference. Just saying something like, “I hear you,” or even taking a moment to understand their perspective—it can change everything...

Jock

It absolutely can. And that’s the thing I hope sticks with people. Building trust isn’t about some grand gesture or sweeping overhaul. It’s the small moments, the conscious choices, consistent empathy that creates a space where families really feel supported.

Jack

Exactly. And for providers it’s not about having all the answers upfront. It’s about listening, collaborating, and really recognising the expertise families and carers bring to the table.

Jock

Yeah because when we see families as partners, we’re not just improving outcomes for autistic patients, though obviously that’s critical. We’re—we’re actually reshaping the entire dynamic of care in the ED.

Jack

And that dynamic, when it’s built on trust and empathy, that’s the thing people remember. It can be the difference between feeling dismissed and feeling respected and valued.

Jock

It’s so true. Families come into these spaces ready to fight for their loved ones because they have to—but imagine a world where they don’t have to fight at all. Where the system automatically welcomes their voices and their expertise as an asset instead of seeing them as interference.

Jack

Right, and that starts with us. As providers, it’s our responsibility to create that safe and welcoming environment. When you think about it, it doesn’t take much—a bit of validation, a little flexibility, and a willingness to let them contribute—it can completely change the landscape of their experience.

Jock

Every interaction counts, every choice matters. And honestly, that’s the key takeaway—families aren’t just part of the care process, they’re central to it. Treating them with empathy and seeing them as collaborators makes all the difference.

Jack

You know, as we talk about trust, empathy, and collaboration, it makes me think about my son. He’s taught me so much—not just about living in the moment, but about how deeply meaningful those personal connections can be. He wears his emotions right on his sleeve. You always know exactly how he feels—there’s no pretense, no masks. He’s, he’s so refreshingly honest. Sometimes, maybe to a fault, but you just—you can’t really help but admire that.

Jock

I think there’s definitely something we can all learn from that. The kind of clarity and and authenticity it’s inspiring, honestly.

Jack

It really is. And you know, I can’t help but think how much better the world would be if more people were like him. Just living with that kind of honesty and openness.

Jock

You’re absolutely right. And I think that’s such a fitting way to end this series. Reminding everyone to pause, reflect on what we’ve learned, and really connect—with patients, families, and with each other.

Jack

And to our audience, I hope this series has helped you and your patients. We'd love some feedback. We hope to start recording season 2 soon and we really value your input.

Jock

What do you want to hear more of? we could take a deep dive into specific topics or explore more communication strategies, or whatever! Reach out at hello at clintix.a-i. See you all soon.