Sarah & Izzy H. - Navigating Autism, Sensory Processing, as a Paediatric Nurse

In this heartwarming episode of Paeds Small Talk, we delve into the extraordinary lives of Sarah Hunstead and her daughter, Izzy, offering an intimate glimpse into their daily challenges and victories.

Sarah, is a seasoned paediatric nurse with a rich background in paediatric emergency care and founder of CPR Kids , and shares her unexpected journey into the world of autism, sensory processing disorder, and OCD, after her daughter Izzy’s diagnosis.

Through their story, you  will discover the nuances of navigating the healthcare system from a dual perspective: a professional within and a parent in need. This episode breaks down the walls of misunderstanding surrounding neurodiversity, with Izzy providing vibrant insight into her world, her interests, and how she copes with her diagnosis in her everyday life.

From discussing the impact of societal expectations to offering a fresh viewpoint on autism representation in the media, Sarah and Izzy’s narrative is of understanding, and empowerment for parents and professionals  individuals navigating similar paths.

Their honest discussions on the importance of finding the right healthcare partners, embracing one’s identity, and fostering a supportive community encapsulate the essence of strength in adversity.

Tune in to be inspired, educated, and moved by their journey, shedding light on the vibrant spectrum of neurodiversity and the special bond between a mother and her daughter.

We give a shout out to Yellow Lady Bugs in this episode and would also like to link to Doctors Without Boarders  who are working in the conflict in Gaza

Transcript

  We acknowledge the traditional owners of the land and pay respects to elders past, present and emerging. We recognise their connection to country and their role in caring for and maintaining country over thousands of years.  These stories are those of everyday heroes, of parents or siblings who go to extraordinary lengths to give their children a home in which they can not just survive, but thrive.

We're so glad you're here with us to listen to Peeth's Small Talk. 



Hi everyone. And welcome back to another episode of Pedsmall Talk. In today's episode, we hear from the amazing Sarah Hunstead and her beautiful daughter, Izzy. Sarah is a paediatric nurse who is determined to share her knowledge, experience and passion for paediatric care. And in 2012, Sarah founded the amazing organization, Sarah Hunstead.

CPR kids.  She has a master's degree in clinical practice and has held various roles in pediatric emergency departments in Sydney and Melbourne, including a nurse unit manager and clinical nurse specialist position. Sarah lives with her husband, her two beautiful daughters, a dog and fish. And actually we met a couple of rats in today's episode.

And today we have had the chance to chat with her and her daughter, Izzy, who's been diagnosed with sensory processing disorder, autism and obsessive compulsive disorder. In this podcast, we discuss  how Sarah as a pediatric nurse and mother navigated this new area of the healthcare system, which she hadn't actually encountered before and the lessons that both her and Izzy have learned along the way.

  



  So Izzy, I'd really like to start with you and just hear a little bit about you, like what your interests are, what you really like doing at the moment in your spare time.

Do you have any favorite music or TV shows? Tell us a little bit about yourself.  

 I'm Izzy.  I really like Madeline May. She's my favorite musician. I like cosplay video games, and ,  Lockwood Co.  

Wow, okay, that's awesome. Cosplay, I think I know a little bit about that, but I must admit I'm probably a little bit naive around Madeline May and the other stuff.

So cosplay, that's when you go and join other people within a  Sort of environment that you dress up and you're all within the same theme. Is that right?  

You can just dress up as whatever you want. You don't have to be with people.  Yeah. I go to cons and dress up and stuff and enter competitions. 

Oh wow, that sounds great. I love a little bit of dress up . Do you have anything in particular that you like to do? Have you got a specialty?  

 I just got a new cosplay and I really like her. Her name's Kokomi from Genshin Impact.

Wow, okay, that's awesome

  

 So  tell us a little bit about yourself and your family, Sarah  



. No problem. So my name is Sarah Hunstedt. I'm a pediatric nurse. I've been a pediatric nurse for more years than I care to admit now. I'm married to another paediatric nurse who's been a paediatric nurse longer than I have.

We met in the emergency department in one of the major paediatric hospitals here in Sydney. And yeah, that it was a work romance that is, 20 years ago.  They're still going and we job shared for 10 years of that. I think the, we've got two girls. Izzy is our youngest child and we also have Eva who is almost 16.

And I think they thought that the ED was their second home because Paul and I worked opposite shifts and so we'd have to bring the kids in for handover. And the person who was leaving would then take them home.  So they have grown up with no fear of hospitals or medical procedures or anything like that because they saw it as, a really happy fun place where they would come in and they'd get a lemonade ice block before they left. 

Izzy, I wonder, would you be happy to share a little bit around like what your medical diagnosis is 

  I have OCD sensory processing disorder autism, yeah. Do I have anything else? 

I'm pretty sure that's all you've got. 

Okay. Yeah, otherwise, 

Yeah.

It's a mystery too, to me. It's a mystery. It is. 



Okay. Amazing. All right. Thank you.  What about explaining a little bit about what that looks like for you in daily life? How that, does that affect you in a day to day way in any way,  

I don't really like people,  but I like crowds, like  Loud noises. 



Yep. Okay. So with school and stuff like that sometimes be  challenging 

 What about thinking about with the OCD, like what kinds of things? How does that affect your, say, for your daily routine? 

I have a bunch of showers.  

And what about the sensory processing? How does that affect you?

I hate wearing like jumpers and stuff. 

That can be challenging, Izzy, when you've got a school uniform that,  is a particular feel or a particular look. Is your school uniform comfy for you or do you have the option to wear free dress if you want? 

Oh, never. We have to wear plastic earrings. 

Plastic earrings?  Yeah, so our, like,  piercings can't be shown

 Oh.  Yeah. 

And what about your uniform, like your jumper or your clothes? Does that, is that a bit frustrating to wear sometimes? 

Yeah, the jumper's rank. It's itchy and gross. Yeah.  

Do you know that takes me back to my high school jumper? I remember it being incredibly itchy.

And I used to think, why did they make something so horrible to wear?   

So is, did you find anything that really, that helps you? Cause that sounds like it would be particularly challenging some days probably more than others.  

I actually like  maybe listen to music, read or play with an animal. 



Yep. So your fav, your favorite artists and things like that.  And is the school accommodating of those things?  

Yeah, I can leave class to go to the student center.  

Oh, good. And that's helpful if you feel like you're getting to the point where you're like getting close to my threshold.

I'm just needing a bit of time out to 

Yeah.  

Those are good tips. And I suppose it's probably because you'd be in high school. I can't imagine they would have a pet..  

 Not at our school. Okay.   

 Izzy, do you have animals at home?  

Yeah, I have a dog and I have two rats. 

Oh, amazing. That must be so nice to come home from school or any other activity and just hang out with them and relax in that way. 

The rats are geriatric, though. They're like teetering along the edge. 

I've 

never met someone that's had a rat before. Are they good pets? 

Yeah.  I think you're going to have to get one of them to show these guys. Oh, can you 

please? Do they have names? Can we have the names of them?

 Yoshi and Shy. 

Oh,  wow. It's really big. 

It is. Oh, Izzy, what is it about rats that you find really  comforting or, that you love? Why rats? 

They're small and furry and huggable and they like,  are pretty, social animals. 

Do you know, I am actually pleasantly surprised because I did not think a rat would be what it looks like on the computer screen. Very soft. I had this vision of, very gray and not very attractive, but that was actually quite beautiful. 

No, he's a 

champagne 

rat. I was gonna say, Sarah, you're probably thinking about the rats in the shed that you get eating all of the grain.

What a great pet. 

Yeah.  

Has he ever made a secret adventure to school? Did he run to your jumper? 

No. No,   

Izzy,  we chat a lot with parents and we're also trying to chat with health professionals as well, but we really want to hear from you around your own experience and.

I know that you've got a little bit of experience yourself with the medical system, so  just wanted to hear  have you got any stories that you'd like to share around, you know, how you've encountered the medical system throughout your life, , or any sort of stories that come to mind around, you know, any Visits to the doctor or other medical visits that you'd like to share.   

I've been treated like a five year old a lot.  Someone once asked me to put a little teddy bear on my stomach and breathe in and out and it can be little Brumby bears going on a rollercoaster. 

And I was like, what the hell? 

Yeah, I can imagine that probably feels a little bit condescending,  is that something that happened to you fairly recently?       

Maybe it's happened a bunch of times.  Yeah,  I was like in a conversation with someone and they were just like, do you know how to do a conversation?       





Yeah, okay. And you don't and you don't have to necessarily know the answer to this. Do you think that people are making assumptions around, what they feel the best way to have interaction and happy for you to jump in here as well, Sarah, if you were around when this happened, so yeah, curious to know, cause obviously it's very handy having your mum, Sarah, also being a pediatric nurse.

So you probably would have a perspective on those types of interactions as well.  

Do you think it's handy or do you think that perhaps having a pediatric nurse for a mother that you're neglected?  

I'm neglected more. I'm pretty sure I broke my arm. She didn't even take me to hospital. And I've still got scars because she did bother getting me stitched up.

She just used Dairy Strips.  

And the truth comes out.  Izzy, I'm also a child of a nurse, so I hear you and I feel your pain. We also grew up walking on broken legs in my family, so it does tend to be.  a little bit what happens. Oh dear, you're, that's I'm going to be hearing 

about this for the next few years, I'm sure.

Yeah, I'm sure you will. , you're okay now though, Izzy? You eventually did get Medical treatment.  

Yeah. I'm pretty sure the arm wasn't fractured just for the record. 

And 

that 

happened like 

three times. 

I hear  my sympathies. I do understand  where you're coming from.

 But your mom, Sarah comes to the appointments with you still. Is that usually the way that you still. Or do you feel confident now to go into all your appointments on your own sometimes? Where's your head at with that?  I always take mum, 

unless it's like someone I know. 

 I think that's one of the things is we found a couple of amazing clinicians that, , Izzy has connected to.

And so therefore, We will drive anywhere to go and see these clinicians and yeah, , I think you're confident to go in by yourself. Obviously I'm the vector to get you there, but you're happy with these clinicians yourself now, aren't you? 

Yeah. Yeah. 



 Izzy, I've got a question for you.

How do you interact with friendship groups then? Is it tricky sometimes?  Yeah, 

 Hanging out with friends is exhausting. It's exhausting. Yeah. Yeah. 



Do your friends understand you?  

Yeah,  at school not as much, but like a lot of friends also are like mentally ill, have autism. So they like really get me. 

That's so helpful, isn't it?  And, like Grace said before, No, two people  are ever going to be exactly the same. So there's going to be little things that whilst you might have the same diagnosis as someone else, there's going to be little things, nuances that are different between you.

, and so do you find that you can help one another in your friendship groups to understand those little things that are different? 



I don't really know.  Do you think you tolerate those differences better than perhaps a neurotypical person would?  

Yeah.  

Yeah.  

And maybe take that little bit of extra effort to understand someone  personally, rather than just taking them with a diagnosis, one person with autism is going to be very different from another person with autism.

So I think it's really important for neurotypical people to understand that we don't just assume everyone's going to be the same when they've got a. Label of autism and so it's actually really, yeah, it's really important, Izzy. And I think that's really helpful for healthcare professionals, but also  just, everyone, whether you're a teacher or a friend, just understand the person personally.   



You feel like that if.  Rather than somebody treats you a certain way as what Grace was saying before, developmentally too young for your age, would you rather them just ask you a question about how you'd like to be treated?

How do you feel about that? I'm just curious. I've never really thought about that before as a mom. I'm just curious. I'd love to know.  Not sure.  Yeah. Yeah. You would you be offended if somebody asked you about your autism and things like that? 

They were 

genuinely wanting to know how to care for you better. 

I won't be offended. Okay. That's good. 

 That's a really great question actually to ask. I think for a couple of different perspectives, Sarah, you're saying like as a mom, but also for us as health professionals too,  people we need to read the room as well sometimes, don't we?

Okay. No, one's always going to get things right all of the time. Like we are all human, , I can imagine in  that situation that you were describing before, Izzy around the person, like getting you to Put the bear on your tummy that might've made you feel a little bit uncomfortable.

And I don't know whether you would have felt  comfortable enough to say this. is not making me comfortable. I don't really like the way that you're interacting with me right now because I know that's actually really hard for us to do as adults.  It takes a lot of confidence, to say that to another health professional in particular, because there's a,  I don't know, there's a bit of a hierarchy there of relationships, isn't there?

What did you feel confident enough to say anything to that person at the time?  

No.  

I don't think I would have either, to be honest. So I think I probably also would have just walked away going, Oh. That was a bit weird. I think the reason why I wanted to ask is because I think that's a really important thing to, for us for health as health professionals to be aware of that, we need to be aware that people, no matter what their age, if they're feeling uncomfortable, may not actually feel  okay.

And saying, Hey, the way you're talking to me right now is. Not making me feel good. Can you please stop it? So we have to really pay a lot of attention to the way that we. are approaching our interactions and that goes for everybody, not just children or teenagers adults, elderly, everybody wants to be treated respectfully and obviously our opinions matter. 

I wonder whether, as you're like expanding on what you were saying, Sarah, like whether the start of a An interaction with a new person.  Maybe just the first step is just getting to know the other person a little bit and just asking them a little bit about themselves and, getting comfortable in that relationship first before you jump straight into. assessing or treating or whatever else you got to do, 

I think back to,  when you first saw, , your favorite clinician 

and  

she, I distinctly remember her saying to you, if we're talking in a way that doesn't make you feel comfortable or something like that, I need to know. And so she set that up right at the beginning going, we need to get to know each other, but it's a two way relationship and I really need to know if something is not working for you.



So creating a safe space from the outset is really important. .      

so I just wanted to also, um, understand a little bit more because you're, you and your husband, pediatric nurses, and you obviously also have a business where you teach, baby and child first aid out in the community, which is just awesome. We absolutely love what you do there.

 But you're on the podcast here today, not. Wearing either of those hats. Actually, you're wearing the hat of a mom so just wanted to hear from you, your perspective as a mom and, encountering the health system       

I think it's one of those things that, because I do have that nurse hat too, when we've had to encounter the health system, we've had an advantage of knowing how it works. And I just, the number of times I've reflected, just going, how people manage to navigate this without that knowledge of how it works, Absolutely baffles me because it can be so hard and complex and often unnecessarily so as well.

I do I constantly tack my hat off to all the parents who have had to learn fast how the health system works to be able to get what they need and advocate for their children. So for us.  Obviously being a couple of emergency nurses, we've known when for, the illness and injury that we've had to go and seek help.

Our experiences in ED have been for, emergencies, 

broken bones, 

Really quite sick little ones at times.  So that, , I have felt like , it's fine. It's something that we've had to go through. We understand how it works and it, it's okay.

But navigating a system that I did not know how to use with Izzy's autism and OCD has been a real eye opener. Because that was an aspect of the health system that I wasn't familiar with, and I really did go in as a parent, rather than having that background knowledge. And we've made some mistakes.

We've,  we've certainly, I think there are quicker ways we could have gotten her help. I think we could have gotten a diagnosis for her a lot earlier than what we did. And, I think that I carry that guilt a lot. Like I, I wonder if we had have gotten earlier intervention for her that, whether or not obviously I, being autistic is who is he is.

This is her. This is not something to be cured or changed or anything like that. But I do wonder if, with early intervention, if she would be able to, unfortunately, the world's not built for her, if she'd be able to, have less trauma from the world, if that makes sense.  

It makes a lot of sense actually.

And I think I can really empathize with it. And I wonder, do you think being pediatric nurses, that sometimes when we see some of these elements that are maybe not neurotypical, we, cause we have the background that we do, we put the support systems in place ourselves within our family to help them a little bit.

And take on a lot of that ownership ourselves, which maybe creates that delay. Cause I feel like that's what I've done with my son in a way. Like I, he's not it's not really obvious. So he masks really well. He can, go to school really well. And we see the behavior when he comes home. And I think, so I've created a structure for him, which is really safe him to navigate the world.

But I think what you're saying really makes sense to me because you also wonder, look, maybe if I'd gotten help earlier, could there have been more that I could have done? Earlier, perhaps with some help from other professionals, I wondered sometimes whether my background has actually been  the contributing factor for some of that, because maybe if I wasn't a pediatric nurse, I would have gone.

I can't, I don't have the tools for this. So therefore, I'm going to go to a professional. I don't know what, if you're happy to answer that question. 

Oh, 100%. Yes, there is.  That with both Paul and myself, that we absolutely did put in structure, like even little things when she was, a lot younger when she was in early primary school, and we were noticing that her relationships with her peers were, different.

Things like that, that we, playdates that, if it got beyond a certain time that she couldn't, that she couldn't cope, it was too much. We would go, okay, then playdates are only 30 minutes long or one hour long, because we know after that it's too much for her. So that, we recognized all these things and exactly as you just said, we put in these, these this safety things, because.

We know that was what she needed at the time, and because of all of these things that we recognized and would do, she did appear to, cope better. She is, she's an incredible masker. I love the fact today that for this, she was herself. She didn't mask for you guys,  which I think she has, made a conscious effort to be herself for this because that's what she wants to do and needs to do, and she needs to be herself.

And I think, looking back that, yes, absolutely, exactly what you said, the structure the safety, all the rest of it, 100 percent contributed to that.  

But I think we should feel very honored that she has been herself and I think that what a huge milestone for her and for you as well to see her feel safe to be herself. 

Absolutely. It is. 

  

So just stopping here to give a quick shout out to the charity of choice that Izzy has mentioned today. Izzy's actually mentioned quite a few different charities, and we would love to give a shout out to all of them, but I've actually chosen one of them because we think it really relates beautifully to the podcast today.

But please take a listen to the other charities and go along and follow them.  Today's shout out though, goes to Yellow Ladybugs. And Yellow Ladybugs is an organization who exists to create an inclusive environment for autistic women, girls, and gender diverse individuals.

And they do this through innovative projects, education, and advocacy. It's driven by lived experience. Experiences and a commitment to neuro affirmation and trauma-informed principles. The goal of Yellow ladybugs is to highlight and support the diverse experiences within our communities, especially focusing on the internal autistic experience.

And together they are working towards an impactful change in policy perceptions and lives. What a fantastic organization to give a shout out to today. Yellow Lady Bucks

 Music 

 so I suppose, I wonder then, obviously we have a unique perspective then I think acknowledging that when we come into the healthcare system as health professionals ourselves, as you've already said, we've got a bit of an understanding of how to navigate that system. 

We already have an advantage. Like when we go into a GP appointment, and we're walking in there knowing like in our head, the ISPA format of handover, we're going to tell them, the situation and the background and the assessment, and we want the recommendation, we already know what we want to get out of it, but, to somebody who doesn't have that background in healthcare. 

that first sort of interaction. So perhaps they're seeing their child is struggling, maybe with social interactions or perhaps like some elements of school, or maybe, they're finding wearing socks really difficult, like more difficult than their other children. They just can't get shoes and socks on their child.

And it's becoming a really big issue for them. And they're trying to then navigate this next step of, does my child need additional support? Is there a diagnosis that we need to seek in order to get that support? I wonder whether we can just chat through that first interaction, like with our GP, going in to get a referral.

What do parents need to know with that? 

Yep, absolutely. I think there's a couple of different things here and I think, first of all, you're at an advantage if you do have a regular GP. somebody that has been seeing your child from when they were baby, to, wherever they are, now, whether they're, six, seven, eight, or even younger, I think that going and seeing somebody or making sure that, and I understand completely that for a lot of areas, this is not possible, that it's just not possible to see a regular GP.

But if you have that and going to see somebody who knows you and your family is really important. And if you do have The little baby going and finding a good GP and sticking with them for continuity of your family's health is really important. If that is actually available to you because it is, it's an absolute privilege to be able to have a GP that will see your kids through until, they're adults themselves and it is a privilege, but if you can do it.

I think one of the things certainly that,  retrospect, looking back when we still had these first conversations with our gp,  what I did was a snapshot of a week. So what are those everyday tasks that are just, that she was struggling with that were just, it was, that showed that things weren't quite right, so it wasn't.

We knew that something wasn't right. We knew that, parents, but it was going, okay, how are we going to take all of these little things that are happening and, that gut feeling and actually package it in a format that will make sense to this person who we're trying to get that across to.

So what we did is we kept not so much a diary, but just a bit of a snapshot of. What did Izzy's day look like? What happened in Izzy's day? So from when she got up, what happened? Getting dressed was, being able to say it took 60 minutes for her to get her socks and jumper on today because she couldn't.

Put it on her body and she was so distressed that she was vomiting from crying like that's not normal, but being able to go and then going, okay, we ended up doing this that and then walk to school at school. This happened then coming home dinner time. We did something that was different to usual and she couldn't eat that food because it was too spicy.

different. So doing a snapshot of a week of what was happening really gave the GP a good picture to be able to say, okay, then we can see things coming through on this. I think we need to refer her for an assessment. And so on. And particularly, so we're thinking about not only tasks, but how they're and I hate to use the word behavior.

I don't want to use the word behavior because they're not behaving badly or anything like that. But it's how are they reacting? What's their emotions to this? How are they interacting? interacting with other people what are you noticing? So those sorts of things. And I think what that kind of snapshot did was it was the key for the GP to ask the right questions. 

And that really helped because everything that I'd forgotten because she's my daughter and I wasn't being a nurse, I was being a mum. So everything that I'd forgotten from that snapshot, GP was able to ask the right questions and extract that from me and my husband, which was, yeah, which was great.  

That is such helpful information, Sarah.

And I think that, we often talk in the nursing world or healthcare world about the objective and subjective sort of measuring. And a lot of this is very subjective from parents, but it's always putting that objective measurement on it at home where you can quantify something, when you're saying it took 60 minutes to do this task.

I think that is actually just such helpful information for parents.

We talk about keeping illness trackers when our children are unwell, when we go and see a healthcare professional, it's exactly the same thing, isn't it? We keep it a bit of a tracker or a bit of an insight into their daily life, gives excellent information for someone who's going to then be able to help you.

And I think that what you just said then too, it really, it's the way that you say it, if I'd have said she doesn't like wearing a jumper, that's very different too. It took 60 minutes for her to be able to put her socks and jumper on and she was so distressed. She was vomiting from crying. There's a big difference there.

Yeah. And that's a big red flag for the GP, obviously. 

Yeah, that's really helpful. Can I ask what age was Izzy when you started to realize that the things that you were putting in place around your own toolkit were no longer working and she needed to seek professional help? 

Yeah, when she started high school.

So when around the age of around grade six the end of grade six and definitely heading into year seven. And that's when we really noticed. It's just that the, that all of that protective stuff that we had put in because she, her independence was, changing and also big,  big one was the communication with her peers that, you know, obviously. Girls mature very quickly. The complexities of teen female relationships.  Oh yes. And, oh God, we've been there, haven't we? Yes, that, that was just this huge chasm was opening up. Just, how revolting teenage girls are like, they're just, they can just be absolute bitches, but they can, just speaking the truth.

You just. We're taken back there. I think Grace and I have just taken back to being 13 and 14. It just, yeah, that's such a challenging time in anyone's life, in a girl's life. And a girl who, is neuroatypical where there are additional challenges. And I guess, there's lots of hormones happening at that age too.

Does that play into it? Do you think? Oh, 

absolutely. It does. It does. And we noticed that she was coming home and she just wasn't getting those nuances of. The female communication where it is a lot of that, that those undertones, those, the nonverbal  communication, it was just, it just wasn't registering with her at all.

And  we're noticing that friendships that she had for a long time were just falling apart and her ability to mask through all this. And she ended up just going into a clinical depression, unable to cope with any parts of daily life because it was so exhausting for her. And now we know she was in autistic burnout, but we didn't have the diagnosis or the language around that at the time. 

Wow. That would have been a really stressful time for you guys as a family. I would imagine watching her go through that.  Just utter helplessness.  

Yeah. Just seeing your young child. And I must admit, this is where the nurse part came in, where I've seen, those 10, 11, 12 year olds come into ED in acute mental health crisis.

And here I am going, hang on a sec, this is now my child, and I don't have the tools to deal with it.  I don't know how to help her. And that was when we just, pulled out everything that we could to get her the help that she needed. And that started at the GP.  

Yeah. Gosh,

it's drawing parallels to a different experience that I had with my youngest daughter when we were in the ED, cause she has a hard arrhythmia. And, At that moment, it didn't actually matter any of the nursing that I'd done or any of the pediatric education that I had because it was an emergency, as you say that's a mental health emergency and we were in a cardiovascular emergency.

You,  you really, you find it hard to sit in both.  A mom and nurse at that moment. Like you have to choose one. Like you have to choose, am I gonna be a mom here or a nurse? 

Yep. 

And I think, we ended up being the mom, which is what is needed, obviously, but it just means that we can't make the nurse decisions that we would make if we were in the hospital and that was someone else's child that we were caring for.

We need help from other people in those emergencies to help, be. Objective and subjective. So we can just care for our child and be there for our child and be there for our family while they're navigating a really, like a crisis, essentially. Do you, does that make sense to you?



Yeah, it absolutely does. And I think that and I think one thing as well is that we need to be in that mom mode and we need to advocate for them as a parent in that time as well. I have a huge regret with the first one of the first clinicians that Izzy saw.

 I pushed Izzy to go back and see them because I thought this person is highly qualified, has incredible experience particularly with what is this being diagnosed with on paper, so I kept on encouraging Izzy to go back and see her, which was a miss.

And I just stopped and went, what are you doing, Sarah? She's got to have a good relationship with this person for goodness sake, advocate for your child, find another clinician and give some feedback to this one. And I did, it was, yeah, the next one that he saw, she's, she still sees now.

She  loves them is as they have the best, patient clinician relationship, which is exactly what's needed. But I, yeah I won't make that mistake again. And we have since also seen another clinician in crisis, In a a different specialty. Once again, 30 seconds in knew that she was not going to connect with Izzy at all.

And at the end of the session, I asked to have a phone call with them. I rang them and I said, look, Isabel. It isn't going to connect with you. I appreciate everything that you've done. This is what Izzy needs and listed them and said, can you recommend a clinician who could meet those needs for Izzy?

And they did.  So it's, yeah, it was, yeah, I've learned my lesson there. So it's about if you know that your child is not going to connect with them and it's about seeking someone who your child is comfortable with. 



What it really highlights is that, again, what we were talking about with Izzy earlier, even us as health professionals can, in the moment,  not feel comfortable to speak up when we see it can take us a little bit of time, can't it? Like there, as much as we've changed and evolved, there's still a, hierarchy and a respect that exists there with health professionals.

As you're saying on paper, like all those boxes with ticks, you're thinking I've got to make this puzzle piece fit here.  And so it can take us a moment, can't it? But I think what you're, what you've shared with that story and that  navigating that particular challenge is really useful for people that even if on paper it looks like it's a perfect match, if in that appointment it isn't, then you've given some really great tools.

Then it isn't and figure out what is and see if you can get some recommendations for someone who can help provide that. And it's great that they were able to let that second professional that you saw were able to refer you onto someone that you were then able to, because you need a real, you need a good therapeutic relationship, don't you?

With with health professional, it's not just about them having the knowledge and the skills, but we need to be able to connect and trust and have a good relationship with our health professionals who look after our care. Yes. 

And I guess it's asking that question is that never being afraid to ask that question or to the advocation can be really hard.

But did Izzy ever recognize that Sarah, or was it mainly you that could see the connection wasn't going to work? Was Izzy able to verbalize that? No, I can't see that person again. 

Yes, absolutely. And it was interesting that her reaction to them was immediate. So she would just shut down or she she wouldn't,  she answered the question, but it might be one word answers or she would just withdraw. 

And it was interesting that one of the clinicians  It did actually didn't understand that Izzy was reacting to the way she was being treated. She thought it was more clinical that she was doing that. And so I had to explain no, what Izzy. She needs to be talked to a 13 year old, not she takes great offense to being treated younger than what she is or like she is not capable or like she doesn't have the skills to communicate with you, even though it is different.

So it's it's a bit like the there's an amazing ad going around on social media at the moment, which is assume that I can  and. Is actually pointed that out to me the other day and because we are very much a family of no, you can, you will, and you can do everything. It just might be look a little different, but you can. 

And I immediately reflected on from what she was saying from that. And I feel like that with those clinicians who were treating her differently, they were just assuming that she couldn't. Communicate as a 13 year old, that she couldn't process, that she couldn't do these things. And that was, it just really made, it made her cranky.

And if you've got a cranky kid who is feeling condesc like she's being condescended and undermined,  she's not going to communicate. You're not going to have a therapeutic relationship and it's a waste of time for everyone.  

Yeah, that's so important. Can I ask a question actually about autism?  Do you think that they have children who have autism have a really great, almost immediate insight into a connection with people?

Is that one of their sort of real strengths is that they can immediately identify if someone is going to be autistic? Connected with them in a meaningful way. I know you spoke about Izzy not being able to identify those nuances with her friendship groups,  but in terms of clinicians, it sounds like she had that immediate  

recognition. 

I think for her it's about perhaps connection that connection part, isn't the word that she would use. It would be,  is this person Going to treat me as I'm expecting to be treated. And if you treat me as I am expecting to be treated, I will give you back what you are asking me.  Does that make sense?

Yeah, it does. And it's just simple. Yeah. Isn't that just manners and simple social etiquette for anyone? Yeah, 

Yeah. Absolutely. I 

think that we may be, and we already put a mask, like there's clinicians already putting a mask in front of her. As to what they assume that she can and can't do.

And I think that's really important information. Can I follow on from this? How did Izzy  take her diagnosis and how did you discuss that with her? Or was that from a clinician? Yeah.  Yep. 

That's sorry. I'm laughing  because when I said, okay, easy, you've been diagnosed with level two autism and she looked at me, she's gone we didn't know that already. 

Excellent insight. Yeah.  Interesting.  And yeah I did, I laughed my head off at that. 

I 

think what 

it did is that it gave her.  An identity and an understanding. I think that's important. I think that  it explained a lot for her and it also gave her community. 

That's interesting, isn't it? That she's now part of, people who understand her.  

Yep. That's exactly right. 

Interesting. We and lots of other parents who have spoken to on this podcast have expressed almost relief. 

Yep,  I would agree with that. I think,  yeah, I would definitely agree with that. I think that diagnosis is not something to be afraid of.

It's, I think she it's who she is and she doesn't need to be different. Yes, she needs help to deal with a world that is not built for her, but she doesn't need to change. It's just about helping her with the trauma that this world causes basically. That's, for her. 



Yeah. That's a really important point. And I suppose, good for people to know if they're navigating the start of that journey as well, like through diagnosis that, although that might be scary, once you've got a diagnosis that gives you something to work with, it gives you professionals that are going to help.

You navigate that and it also gives you a community, not just for your child, but also for you, like you now have a network of other mums and carers 

and 

health professionals who are going to help you navigate those tricky moments too. 





 Is there anything else Izzy that you wanted to share with us during this chat or anything  that you thought, oh, this is actually something I would really love to share with people?

Probably autism representation in the media. For example, I like love trains. That's sarcasm. Like things like young Sheldon. This one's a bit like controversial, 

, but a lot of shows with autistic characters played by non autistic people, it's like really, it's Honestly, just cringy.

I don't know if you've ever seen that big flop that Sia made, it's called Music or Something. She got a neurotypical person to play an autistic, non verbal person and it did not,  it wasn't very good.  Yeah.   I might have to say that now. No, it's also bad in general.

Apparently the music sucks. But things like in Heartbreak High with Chloe Hayden, oh, love her in  a lot of actually kids TV shows not exactly kids but for everyone, for example, The Owl House, or the new production of She Ra they often have characters that really represent it.

People with ADHD or autism, and  something I really noticed with that, it's also people who are queer it's like a Venn diagram, you're like, there's like queer and like neurodivergent, and For a lot of people, they're both.  Yeah.,  

I really love that you brought that up too, Izzy, around, representation in the media. Because media is so powerful, isn't it? Particularly for young people. This is what, how we're seeing the world  and people being accurately represented in the media and in shows is really important, not just for yourself to see yourself reflected, but also to dispel myths and misconceptions, as you brought up around the train thing, how many people out there think that.

That is a common theme because it's continually brought up in the way that we see people represented. So I think that's a really important thing to raise and I think that we should listen to that very astutely and remember that, we should try and get people involved who are actually experiencing or, identifying in those ways to represent themselves in the media for sure. 

All right. So  also the other thing that I was going to ask was if you have a charity that you would like us to raise awareness for at all, because we do usually like to give a shout out to different charities on our podcast. 

Do you have one that comes to mind if we can give a shout out to?  

Probably anything supporting  Palestine in like the Gaza Strip and stuff. 

And for these things, with Peds as well, being in Peds, can you think of anything here in Australia that they could, from a, from perhaps a paediatric perspective as well? Whether it's 2010 or Yellow Ladybugs or any of that other  

Yeah there's a couple queer charities I do stuff with 2010 Yellow Ladybugs and Minus 18. 



I just wanted to ask Sarah, looking forward, we all have hopes and dreams for our children.

What are your hopes for Izzy?  

Oh gosh. My hopes for Iz is My hopes for Izzy is that she really finds something in her adult life that she gets to do her special interests that light her up inside every single day.  That she just finds that career path that she just gets joy getting out of bed in the morning and surrounded by the people who understand her.

And. We'll just support her and celebrate who she is and she gets to do that thing that lights her up. That's what I want for her more than anything.  

That's a beautiful hope. And I think that's something that we can all aspire to for our children. It's that connection with world around us, with ourselves, with the people who love us.

And I think that's, such a wonderful aspiration. It's beautiful, Sarah. 

Brilliant. Okay. Thank you so much for joining us today, Sarah and Izzy. We really have appreciated chatting with you both. And I think this is going to be a really awesome resource for parents and young adults and children who are navigating. Different types of autism or sensory processing disorder or OCD diagnosis and how we can interact with health professionals and how we can help them navigate the world better and just understand a little bit more about what they might be going through.

So thank you both for joining us

 Music  

Grace. That was an amazing episode. Another amazing episode. And it was such a privilege to talk to both Sarah, the mother, but also a young person who has a neurodiverse diagnosis and to hear from her, the challenges, but also the beauty around her diagnosis was really.

It was really special and it was really insightful. And I'm curious to hear what your main takeaway points were.  

Yeah, there were quite a few different moments in that  episode that I really, I had a few aha moments, I just also really appreciated how vulnerable and open and honest Sarah was around her journey as a mom.

And I could relate to many of those different experiences she had from different experiences I've also had with my children. But something that I've actually been reflecting on a lot because we're recording this a day later. So it's interesting now coming in with a perspective of a whole day after the episode.

And something that I was even thinking about last night was, it was a small comment that Sarah made, but it was massive to me because she said that she doesn't like to use the word behavior when she's describing Izzy or any other child's reactions. She said she preferred to use the word reaction. And I've really been. 

Thinking on this a lot and I agree because, language is so important and we often will use these words and these terms like in life or in health care unknowingly that they come with certain connotations. And this is another one. And it just takes someone to say, This word like behavior has a connotation like it is deliberate and, particularly with children who are  neurodiverse, with ADHD, sorry, with autism, it's not a behavior.

It's not a deliberate practice, it's a reaction. And I think that the language that we use is really important. Another one that came up in a previous episode was when, and you can go back and have a listen to this one with Mim, when she was talking about how, healthcare professionals were calling her son's lack of weight gain failure to thrive.

And for her, she mentioned in that episode that language around failure was really not helpful for them in that moment. Cause it wasn't really a failure. He had a medical reason why he wasn't able to put on weight. And there's some parallels with that very different types of language, but again, those words that we use really strong and powerful, and we should really bring them up when we think that they're not accurately representing something.

Within healthcare in particular.  

Yeah, I think they are very valid points and certainly something that we can take away as healthcare professionals, but also any person out there in the community, whether you're either serving someone from a therapeutic relationship or whether you are just a friend or a member of the community.

So yeah, really great insights. That's it for today's session, everyone. Thank you so much for joining us. Be sure to subscribe and download this episode and we will see you next time on Pete's Small Talk. 



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