The Atypical Life Podcast - Episode 2: Navigating Autism Diagnosis Journeys
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~Don't move the mic. Me getting awkwardly into the chair. Did you press record? I did not. That might be,~
~just think. Get myself comfortable.~
Introduction
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Welcome back, episode two of The Atypical Life Podcast. Probably need to work on that intro. Get something fun. Fun instead of. Instead of me. You are exciting sometimes. So it depends on the time of the day. And if I still medicated
today what we are talking about today's topic, the, ~uh,~ navigating the diagnostic process or getting a diagnosis, um, we. Talked a little bit in the first episode and for those that follow along may be familiar already, but for those that are brand new here, ~um,~ in our household, we're a neurodivergent, household neurodivergent family.
We have three children, aged two, just turned 11 and 12, [00:01:00] all diagnosed autistic. Our older two are diagnosed A DHD. And our oldest two are also PDAs and our middle child is diagnosed formally gifted. So lots of different labels. Some might be familiar with those letters and acronyms. Some might be thinking, what the hell are they?
But we're gonna go through, ~um,~ talk about them in more detail as we. I have more episodes. ~Um,~ but today we thought the common question that comes up is around how to access a diagnosis, right? That comes up heaps a lot with all the families that we support and interact with. Obviously, we are part of our disability community here, so we are fortunate to know a lot of people.
Informally support a lot of people, but also formally within the [00:02:00] work we do. And, um, there are lots of questions all the time in this space. So, yeah. So I think my, I dunno be good for you to share how your experience was, see a process with three kiddos and then as an adult getting the, yeah. So, 'cause we started our diagnostic journey obviously 10 years ago for, for Cooper, who's our oldest.
She, um, I think she was two when we were formally diagnosed, but we started the diagnosis process much earlier than that. I think she was, um, probably, uh, about, probably about 15 months old. We started accessing speech therapy first. Um, and then, you know, even like the process to access a diagnosis now [00:03:00] is different to how it was 10 years ago.
And it, it's been so interesting navigating it all again with our SJ who's two, because he was tiny when he got bit died. He, yeah, he was diagnosed. We, well, we, we got him diagnosed at 14 months old, which is quite young. Yeah. So, you know, 10 years ago they didn't, they wouldn't consider a diagnosis until children.
Um, we are at least two because developmentally children can progress in lots of different stages. Um, and it can be dependent on lots of different things. Um, but for us, you know, back then. It seems crazy now because the com, you know, the world community, our social media has played a huge influence in awareness and understanding.
I mean, we still have a lot of work to do in the neurodivergent space and the space of inclusion and really [00:04:00] supporting neurodivergent individuals. But, um, in terms of diagnosis and, you know, even knowing. About it and what to look for. 10 years ago that was brand new to us. Um, we had had zero experience really with autism.
It wasn't something that was on our radar. It wasn't even a conversation we had, you know, as parents or you know, pre parents preparing to have children. You don't talk about, you know, what will life be like or what, you know, how would this impact us? How would you know? What would we do? It's just not was especially back, not in our mind.
Not in our mind. It was definitely in our mind. For sj. Um, obviously with two already being diagnosed, but not 10 years ago.
Cooper's Diagnosis Journey (10 Years Ago)
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So when, yeah, I guess when we started navigating that space it was completely overwhelming. Um, and very different too to now. So, but yeah, I guess, um, I'm like, where do we start? And [00:05:00] that's probably a question most parents ask.
Where do we start? I guess. I guess You go, there you go. Otherwise, I won't talk forever. I guess, what were the signs or Cooper being diagnosed, your first time parents is what made you initiate Yeah. Getting a diagnosis? Yeah. I think, um, it's, that's like for us and for Maurice parents, we didn't have anything to compare parenting to.
And you know what? What children should or shouldn't be doing at certain ages. I think the initial, um, yeah, I guess characteristics or signs that we noticed that led us down that path was, um, first and foremost speech. So we noticed that she wasn't, um, communicating, um, you know, I think by a certain, by like age two, they're supposed to say about 50 words or something like that.
And, [00:06:00] um. We, she wasn't really, um, saying anything at all. Uh, there was also other signs where she would, you know, repeatedly climb the furniture. She was a great climber. Um, and I would say, no, get down or stop doing that. And she would do it anyway. And I was like, well, what's going on? Like, like, you know, eventually we ended up going to playgroup and I noticed other parents would like.
Be like, you know, don't do that. And kids would listen. I was like, how'd you get them to do that? How? Because mine doesn't do that. Um, she also was a terrible sleeper, and, but I think it was, it was, um, she was so used to like spin for like 20 minutes, like nonstop. But then even when I met him, this was like, after the diagnosis, she'd be spinning on like this, like swing thing, reading her book and yeah, get dizzy watching her.
She just, yeah. And she'd still like, stop and walk off in a straight line. What [00:07:00] like, um, something's different. Um, was I really like. I, I remember it being a really frustrating time though, because even back then, like it, it's hard to access services now and you know, families are often on wait lists for a long time.
But for even back then, we, we didn't have the NDIS, this was pre NDIS, so we were accessing services through the hospital, through population health. Um, and there was a wait list to see a speech pathologist. Um, but then when we accessed that, there was kind of that. Started having some of those conversations.
And it's funny 'cause I remember even once we had the assessment booked in, it was, I remember saying to the speechie and the OT like, do you reckon she will get a diagnosis? Like, and they were like, mm, pretty sure. Um, but obviously it was brand new to us and we just didn't know. But I do remember kind of sitting, doing the Googling, wait one, late one night.
Um, you know, [00:08:00] you know, as parents, do we put in, or Dr. Google put in. Signs that we see and symptoms and characteristics and, um, the word autism started popping up and I was, Hmm, okay. And then, you know, the more I read about it and I was like. There's, it's autism. Um, but so the, the process, um, you know, for families that are listening, listening in, you kind of have two choices.
You can access a diagnosis through the public system, which is free. You get a referral through the pediatrician, um, and you go on the wait list. And that can take, um, you know, anywhere between kind of. One to, let's say three years depending on where you are, where you live, and um, I guess availability of diagnostic clinicians that are traveling at the time.
And even back then, 10 years ago, it was the same. The wait list was long. So, um. You know, being proactive me, I was like, no, I need to know [00:09:00] now because I can't sit in the what ifs or you know, what could this be? So we ended up, we decided to go privately and that looked like us having to travel to Perth, which is about 1600 kilometers away from where we currently live or, you know, have lived for this time.
And, um. Expensive, but also, um, was a great experience. We were referred to a psychologist and speech pathologist at the time, and, and you know, the way that it used to be, um, 10 years ago was that you needed the, the sign off. From the three clinicians, the pediatrician, the um, psychologist and the speech pathologist.
And it's a little bit different now and it also differs state to state, um, who can perform the assessment and formalize a diagnosis. But that's how it was for us. So that's what we, we did. And um, yeah, she, two hours later in the assessment, [00:10:00] um, the appointment, they were like, yep. Or autism and you know, that that was it.
Piece of paper, away you go, where to next? Where to next? And of course, you know, that's, I think, you know, as most parents probably experience when it's your child, you wanna do the best for them. So that led me down the rabbit hole of like, okay, well, where. Autism, we got the diagnosis, what do we need to do?
And you know, you dive into all the appointments and um, that's what we did. And, uh, we were accessing services. It was still pre NDIS, we accessing speech and OT through the hospital. And, um, by that stage we had a, I think Mr. L was, must have been about 10 months by this point. And, you know, I remember thinking.
Oh, I get it now. He's so different. Mm-hmm. 'cause he was socially, he wanted [00:11:00] to, you know, be in Cooper's space all the time and he was, he just seemed like a happy kid and, um, you know, had a Yeah. Was doing things differently. Mm-hmm. I just remember it was different and. So I was like, okay, I get it now. Like, you know, that's autism.
This is neurotypical. And that's not the word we used at the time, but that's, that's the appropriate word now.
Mr. L's Diagnosis at 17 Months
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And then, um, yeah, it was only, I think about like a month later and, um. Yeah, I reckon and, and it is funny because it wasn't, you know, you kind of have those thoughts as a parent, like, oh, is it all in my head?
Like, am I seeing things? Am I looking for things? I'm not sure. Mm-hmm. But it was, um, I think what was helpful at the time was it wasn't just me. 'cause we also had Cooper's speech and OT that were coming into the home every week and they were also watching Mr. L develop as well. And we were all like, oh yeah, it's different.
No, he's good. Um. [00:12:00] And then suddenly he was not good. He was completely overwhelmed with the world. Yeah. And he was meeting all the other milestones, but he still didn't have words. And he like, we couldn't leave the house 'cause he would get completely distressed and there was no clear reason why. And um, and so I think he started doing, um, speech and OT.
With Cooper from like when he was 12 months old and they were like, yeah, okay, let's, let's put him on the list too and we'll see how we go. And you know, he was the sensory seeking kid, but also the sensory sensitive kid, completely overwhelmed. And also the kid that had like. No spatial awareness. I remember he always was like walking around with this big bruise and egg on his head.
'cause he was constantly like running into things, into the wall or falling over, banging his head and um, to the point where they were like, oh, if, you know, should we look at putting a helmet on [00:13:00] him? But we decided not to because it was gonna take six months to have the helmet. Built and then it wouldn't fit by the time it arrived anyway.
Um, but there we ended up going down. So yeah, went down the path, went to see the pediatrician, he said, yep, you've got one. So let's, you know, let's start the process early. And he was actually diagnosed, so this was even, you know, only nine years ago. But, um, yeah, he was diagnosed at 17 months old, which at the time was.
Considerably young. It was not common. Yeah. But because we had that family history, um, and it in the end was quite obvious. Yeah. He's spent the whole two hour assessment. Crying without consolation, um, without being able to soothe and, um, couldn't engage at all, was just completely overwhelmed from walking into a new building.
And so her, you know, had the same [00:14:00] process with, um, we had the same diagnostic team, which was really nice. 'cause we already were comfortable there. We knew where we were going as parents. Um, but different experience because yeah, like they, they. Basically went through the assessment criteria with us, asked us questions.
He cried the whole time and by the end of the appointment they were like, we're gonna support the diagnosis. Um, which we didn't know because of his age, if they would or not, but we went down that path. But yeah, that was, um, an emotional time because it was, okay, now we've got two two. Um, and that was very uncommon.
Nine years ago, it was uncommon to have one autistic child, let alone two. Um, we had two diagnosed under three, so it was a lot. And again, this was still pre NDIS. [00:15:00] We had the very small. But appreciated block funding from the hawa or Better Start Funding System, um, which gave us a certain amount of money that could only be spent within a one to two year period.
Um, but also not many providers in our area that could support us. So we had a combination of providers using this funding and we also still had some clinicians through the public health system and. At the time there wasn't any collaboration. And so between speech ot, we had a psychologist through Department of Communities.
We had an LAC through Department of Communities. We had a dietician at physio. It was something ridiculous, like we were doing like 12 appointments every single week, which is a lot.
Navigating Multiple Appointments and Isolation
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It [00:16:00] was so much, and in. You know, reflecting back now, I'm like, I don't like, as a parent, like I, you know, I wish I had the confidence back then to go, this is too much for us.
Um, and there was, there still isn't a lot of information, but back then, back then, like nine years ago, there probably wasn't as much information and you're probably doing what you thought was the most beneficial. Or I guess purposeful for the kids. I was doing what I thought I had to do. Mm-hmm. You know, these people around us were, they're professionals.
I knew nothing about autism in my mind. Whatever they said, that was it. That was what we do. That was the strategy, that was the direction, that was what was going to help. Yes. And so we did all the things and you know, writing back again, like I was still [00:17:00] quite like, you know, in that postpartum period where I was still probably experiencing some postnatal depression, um, I was always experiencing anxiety.
I was anxious from the moment. I was anxious, let's be honest, way before I was pregnant, but I was anxious throughout both pregnancies. Um, and this really made me feel very disconnected, like no one. The way that, you know, you go to the playgroups and you are supposed to form kind of that parenting support circle.
Mm-hmm. And I didn't feel like I could relate to anyone there because what they were experiencing versus different. Yeah. Versus what we were going through was very, very different. Our weeks were spent at appointments and awake all night. 'cause neither of them slept and. Um, you know, I couldn't leave the house without someone else coming with [00:18:00] us because of them running away.
Yeah. It was unsafe. And so, you know, that diagnosis for us was life changing quite literally. Yeah. Like changed our direction of life. You know, our world became all about autism and neurodivergence and, um. Yeah, we felt completely isolated. We were already, you know, 1600 kilometers away from family, but we also were completely isolated from being able to leave the house and being able to connect with people that could understand.
Mm-hmm. Definitely. And so, yeah, that was, that was their journey. Obviously there's a big gap between. The big kids and sj, but I think we did the maths last time. You got your diagnosis [00:19:00] before sj? Yeah, I think like, yeah, it was like very close. I think we got it around the, around the same time. Time. Like we started going through the process around the same time and yeah.
Planning for a Third Child
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So obviously we, we had, uh, for the longest time our lives were the big kids. That was. We were just doing live, we were surviving the day. Um, going to all the appointments, managing the systems, and obviously we will talk about all the things that happened in between, but, um, eventually we did, you know, somewhat get to a place where we felt like we could have a third child and we, we did wanna ex extend our family.
And there was some discussions around, you know, what that will look like. And for us it was, you know, the likelihood of our child being autistic. It was very high. Oh yeah. And we were a hundred percent okay with that because autism is life. Because, or you know, for us, autism [00:20:00] doesn't, doesn't change. It's just who we are.
It's, that doesn't change. Like there are some things that are challenging, but it's not a reason not to. No. Have not to add another awesome kid to our crew. Little joy, um, in which case we did. And, you know, um, I was having this discussion online with a, another professional recently about, you know, being neurodivergent and navigating pregnancy like.
That's challenging and no one talks about that, the sensory experiences that you go through and, um, you know, even just advocating for yourself with the doctors and, you know, how do I had a really tough time with that pregnancy, but, um, something that was made tougher was the, the obstetrician that I had who was determined to keep my baby in my body as long as possible, because there was a better chance he wouldn't be autistic if we did that.[00:21:00]
Huh? I think what it was, it was tough and I was, you know, I was already emotional hormones and I was, I was severely depressed and it was cold. Where you don't like, yes, like, 'cause we had to be down in Perth because of high risk pregnancy, because my other two were born. Premature four weeks early and our hospital doesn't deliver premature babies, so we had to be near the specialists, um, which meant we were yeah, away from home for a long period of time.
Uh, so it was already challenging and emotional and that obviously didn't help, but our beautiful boy was eventually born and, um, has significantly added joy to our lives. Oh, yes. Not without its challenges, um, which we would talk about. Not, I mean, not like challenges, challenges, but like, you know, [00:22:00] little pivot points and things that we had to navigate to, or even just going from two kids to three kids, like, and which any parent that's listening in knows that that's a big jump.
Yeah. One to two is a big jump. Two to three is a like what we just added extra big kids for like. There's little bit of a gap between them with they like, yeah. Yeah. So yeah, there's, um, eight years between the boys parenting will just be different because Yeah. In general. Yeah. And I love, like there's this, um, podcast that regularly goes around, um, and you know, that talks about how, you know, you, you actually never get the same parent, even if you have the same parents.
No one ever has the same parent, you know, for our big kids, our first. I, she was my first, so she had my soul attention. My second had to share me with her. Yeah. And Tim, and now, you know, having so, uh, you know, a di degree and life experience and [00:23:00] being 10 years older, our third has definitely got different parents.
Different life experience. Um, if you're watching the video, he would've seen that little side glance between Chelsea and I, and that's a, you just, just wait. There's more. Um, but yeah, so I guess, you know, we were always prepared for, you know, what could potentially come. And I remember doing the eight week checkup with the child health nurse and her flagging.
Sjs little stems that he had at the time, even at that age, the like head wobble back on forward, um, and started like, they started talking then about, you know, watch out for diagnosis, watch out for the red flags. And I was like, just let me enjoy my baby, because he's still a baby. He's eight weeks, he's tiny.
Um, and then, and so like I mentioned, like he, he was [00:24:00] diagnosed. We did, did pursue a diagnosis for him at 14 months. Um, but that wasn't the directional pressure from clinicians in the end. That was driven by us because, um, our big kids wanted to know as a family unit too, just, yeah, it was a family decision.
They were so curious. They'd never had a younger sibling, obviously. Uh, are they, is he gonna be autistic like us? You know, what's he gonna like, what's he gonna do? Do you think he'll be gamer like me? Um, and autism was the one that they, they were most curious about and they just, they wanted to know, and we thought it was important for, you know, raising him in our family unit.
You know, not that our sense of belonging. Well, yeah, a sense of identity. Yeah. Um, identity in himself, but also identity within the family. We wanted him to have that. Have that we wanted to know for him and make sure we were doing all the [00:25:00] right things, of course, even though we were comfortable in how we were raising.
But, um, yeah. So, but yeah, I think it was, obviously I've done, hmm, a lot of study. I went back to, um, went back, well, not back. I went to university, um, not long after. My two big kids were diagnosed and navigating some of life's challenges because I felt like I wasn't getting the answers I needed. I didn't feel like in the end our professionals, our team that we had around us, could answer the questions that I had.
They didn't live in, they weren't. Weren't doing it 24 7. The strategies they were giving us weren't aligning, and I just needed more, which I now know is because of my brain type. But, um, yeah, anyway, went down the rabbit hole of, um, studying and, um, through bachelor degrees and masters and, um, grad certificates [00:26:00] specializing in this.
Area. I was like reading all the literature of course. And you know, am I relating it to the kids going, yes, this makes sense. Yes, this gives me more information. Like, you know, I can see this in the, the kids that I, um, support in our community programs. And, um, and then I was like, hang on a second, this is also me, hang on.
But I kind of, I already had let, let's be honest, already had questions. Um. I think you've always been on a journey of self identity
SJ's Diagnosis at 14 Months
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and finding where you belong and what makes you, you. Yeah. It's always been good questions. Yeah, and I guess like that, you know, when we, when we talked about it recently was when, um, when I reflected back on it, it was, you know, I never really felt like I belonged anywhere and.
Didn't feel like, you know, everyone was able to do all these things so [00:27:00] easily, and I felt like a little bit of an alien and people seemed to socialize really well. And how do you do that? How do you do that without feeling like you're an imposter or Yeah, an imposter. Um, and you know, I, I had struggled with.
Depression and anxiety, um, growing up. And not that I knew it at the time or had a name for it, but I just knew that I didn't feel good and I guess, yeah, so that led me down the rabbit hole of just wanting to know more. You know, I'd been in, seeing I've, I had seen different counselors and psychologists over the years from time to time, which never really felt.
Right. Like the things they were telling me, like, you know, get more sleep or, you know, get more sleep. Get more sleep. Yeah. And I was like, Hmm, okay. Um, yeah, that'll make it better. No, let's, I have kids. [00:28:00] Well that too, and, um. Even pre-kids, like, it was like, yeah, get more sleep. Okay. I don't see how that helps me talk to that person to start a conversation.
I couldn't relate it back to that. And, um,
Adult Diagnosis Journey
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and so I, um, yeah, it was around, you know, that transition period after having SJ and watching him and, you know, more reflection that I was at. Maybe I'll just. We will see. And I think I originally went in with, you know, thinking, I just wanted to know. I knew something was different but couldn't put my finger on it.
And I just knew life felt hard. And for the longest time I probably just thought it felt hard because of the thing, things we were navigating with the kids. Yeah. You know, constantly having to advocate at school. Advocate for funding. Advocate. Advocate, advocate everywhere. Um. And, and then I realized that actually maybe it wasn't just that that was making it hard because even as they got bigger, [00:29:00] and obviously we had your support, life did get a little bit easier.
It was still, but it still felt hard. Um, hang on a second. And so, yeah, it got, I thought I was going in to really kind of pull apart, you know, some. Childhood trauma and my depression, anxiety, and see where that kind of landed. And obviously, um, stepped away with a diagnosis. But even that diagnosis process was much different to the kids.
The kids, like it was, um. Because as an adult and you know, not everyone pursues a diagnosis. Like if you're an A DHD, you might pursue a diagnosis, um, for the purpose of getting medication, if that's the route you're going down. I did and it was very helpful. Um, but you might also, you know, pursue a diagnosis if you wanna access support, say through like the, um, disability support pension or the NDIS, or there's also the alternative to.[00:30:00]
Go through the process for kind of a self report for identity purposes, just to just to know and know more about yourself. But then there's also many people that don't formalize the diagnosis and just self identify as being either neuro diversion or autistic or, um, an A-D-H-D-R. So there's a couple of different ways that you can do it.
Um, they don't really have the option to go publicly as an adult unless you are. Uh, an in-hospital patient. So if you are an adult, you do have to go down the private route. Um, and for me, I actually found, so I, I, you know, wanted to go through someone that was neuro affirming and, and also a neurodivergent clinician that would, you know, probably have a better insight to life.
Um, as I was describing it and. I found the process for me was actually way more thorough [00:31:00] than for the kids. The kids, you know, we did have, you know, maybe a GP appointment. We did have a pediatrician appointment, but ultimately the actual assessment was completed within two hours. And actually, and you know, even for sj, even shorter than that, but, um, for me it was spread out over months.
Of singular one hour appointments and different questionnaires. So like, I think I might have completed around 12 different questionnaires. And so when the, you know, final kind of conclusion came through in the report, it was so detailed, um, which I love 'cause I love to know things and, you know, have as many tools up my sleeve as possible.
But, um, what we, yeah, I, I felt like it was. Accurate representation. Mm-hmm. Because they'd been able to see me on many different days. Oh yeah. Different moments and different, different [00:32:00] moments. Um, yeah. Yeah. And so yeah, that kind of, that was my journey. And um, again, if you're an A DHD or, and you're formalizing it, you would take that report to then a psychiatrist and they will sign off on it, um, and oversee your, your case.
Um, and for me that was extremely beneficial and, um, gave me so much. I think understanding, but also grace. Like now I'm like, that's why I do that. That's why it feels hard, which doesn't provide, you know, an excuse and it doesn't stop me from doing it, but at least I have now language to it. But the tools I guess to, yeah, I got.
Got language to describe why and how I'm feeling and experiencing and all of those things. Um, and then I guess because of my experience, I was, yeah, sold [00:33:00] on, you know, I wanted to feel heard when I, um, pursued Sjs diagnosis. So we also chose a neuro affirming provider for him. And uh, like I said, he was diagnosed at 14 months, which is very young and a lot of.
Places do not diagnose that young. Some diagnose as young as two, sometimes three. Um, so it wasn't, it was, it was tricky but also made sense. Made sense for us, um, to find a neuro affirming provider that was willing to kind of hear our concerns. And, um, we had the most comfortable, um, yeah, kind of. Good experience with him because again, we had to fly to Perth, which is 1600 kilometers away.
And um, you know, traveling with any baby is challenging. So, um. That went as [00:34:00] well as it could go, but we were made to feel really comfortable in the appointment. We had, um, a team of three, uh, that contributed to the assessment and it found really heard and supported. And it wasn't hard for us to, I didn't feel like I had to really justify.
Um, I did feel heard as a parent and as a professional working in the space. Um, they were able to really. See what I was explaining and, and for him, like I often get asked, you know, is he more like, you know, Cooper or more like Mr. L in terms of support needs, but he's definitely his own, own person, own little person.
He has a big personality and also can be, but also the shyest, little relationship dependent. Yes. And um, yeah. Also really crazy. Oh [00:35:00] my crazy kid. Um, but the most lovable kid ever. And you know, he, even the way that he presented was different. Yeah. You know, the way that he engaged with people was different.
Um, the way that he communicates is different. The way he's, you know, sees the world and interacts with the world is different. Yeah, yeah. And I'm so, um, he's currently in that stage where I feel like, you know, he's, he's almost two and a half now, but in that stage now where I'm like getting to know him every day 'cause he is just changing so much and, yeah.
Yeah. But that diagnosis process again was like. It was a nice process and not everyone has the same experience. It was expensive. You know, when we first, when we did the process two and a half, uh, 10, 10 years ago, it was two and a half thousand dollars. And that was expensive. Yeah. For sj we paid [00:36:00] over $4,000, you know, plus the travel to get down there.
Um, but it was. Enabled us. And then, you know, the other thing that I didn't mention before, you know, we did, we, we sought the diagnosis early because we wanted that, wanted to know for that identity purpose. But the other reason was, uh, I knew that we were gonna be accessing support services. I knew that, you know, intervention therapy services, um, would be helpful and that was gonna happen through the NDIS and I only wanted to do that process once.
Because if you access the NDI, you can access the NDIS under developmental delay. Um, but then you have to reapply or go through reassessment after they're six years old with a diagnosis to stay on that process. And I didn't wanna have to go through the hassle. So I just, we did it, did it once, got the diagnosis.
We know he has [00:37:00] long-term support needs, but I think let's build a plan, getting the diagnosis. Also helped the big kids form a connection with him. Yeah. As a family. It was such a great talking point too, because, you know, being, um, you know, they were nine and 10 at the time, you know, they're still learning.
Like we, we talk about autism all the time and our house, and it's something that we really celebrate and we're always talking about, you know, individual needs. But also being able to use that as a conversation like, and in comparison like, oh, you know, SJ needs this and you need that. And um, what do you think Sjs telling you with his body?
And like that was, has been such a good thing. Yeah. And it's given them more language and I think, you know, understanding in a way I think too. Yeah. They were very understanding of their own. Like just personality and autism, but then yeah, [00:38:00] seeing it represented in someone else. Yeah. And I think especially, um, you know, we can do a whole, um, topic on this alone, but um, you know, having a younger sibling come through, um, is a whole new experience.
Yeah. Especially when you are neurodivergent and for them learning about. A baby in the house who cries and that is, can be overwhelming. It helped to be able to make comparisons like, you know, obviously babies cry because they're trying to communicate different things and you know how sometimes you feel overwhelmed, like, what do you do?
Or, you know, even now being two and a half, like when he becomes overwhelmed, we can kind of make those parallels of like, and especially, you know, between Cooper and sj, that was a challenging. Experience and it took them a long time to bond. And actually they have so much similarities. Oh yeah. And shared [00:39:00] interests, which has been so great for their bond.
And I think that's really helped her to kind of like. Form her identity as a big sister. Mm-hmm. Because she can now go, ah, I can see Sjs overwhelmed because of it's too loud, or whatever it might be. Yeah. So in that way, like again, that's given us those diagnosis and those labels. Um. Is has given us language for that.
The Value of Early Diagnosis and Labels
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And a lot of people, um, you know, go, well, do we really need it? And if we can access NDIS, do we need the diagnosis for us? And, you know, the research shows us as well, like the more language and self-awareness we have and um, awareness of our own identity. The better mental health come, mental health outcomes are later because.
Kids know that they're different. Yeah. They just dunno why. And so when we give them a label and language and tools, the information, information that helps them be able to [00:40:00] understand, um, and then also make comparisons between themselves and others and not just notice the differences, but also share in similarities.
And particularly for our neurodivergent children, having other neurodivergent children around them, um, you know, that's been. Such a strength in our family because again, 10 years ago, 15 years ago, 20 years ago, it was really hard to see an autistic person. Mm-hmm. It's an invisible disability, but they're also not represented well in the media.
No. So it was very isolating. Unless you had someone in your family, it was you felt alone and different. Whereas our beautiful kids are growing up in a household where. Actually we're all different but also similar to each other. So it's been an ongoing journey. Of course, accessing diagnosis, it's been expensive and we're fortunate.
I feel very privileged to be able to go down that path. 'cause a lot of families can't and [00:41:00] it takes time and you hit barriers and delays accessing support. Um, but you know, for those listening along, that's I guess some of the insight behind.
Final Thoughts and Resources
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Why we did it that way, how we did it. Also, how you can do it. Um, and yeah, and if you have questions or concerns and you are wanting to know, start with your gp, referral to a pediatrician.
Reach out, ask any questions that you like, uh, happy to, to help. Yeah. Yeah, that's all. Our session for today. It's our session for today. Um, no, that's our, um, podcast on navigating diagnosis. Thanks for listening and we will catch you soon. Bye bye.
