Welcome to Embracing Autism
Show Notes for the Embracing Autism Podcast — EP 100

Introducing Embracing Autism: A Journey with Autistic Children

Lia: In this episode, we share our personal journey as a married neurodiverse, couple raising autistic children. We discuss how our experience led us to create the charity initiative AutismWish as well as how this podcast intends to help parents like you.

Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support while spreading awareness and acceptance of autism spectrum disorder. I’m Lia.
Matt: And I’m Matt!

Lia: Each week we will discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources, and sharing our personal stories. This is-

Lia & Matt: Embracing Autism!

Discussion
Lia: Hi, everyone! I want to welcome you to our first-ever episode of Embracing Autism the podcast, brought to you by AutismWish, which is our little charity project. We started recording this podcast to provide parents with some resources and information, mostly because of our personal journey with autism. We are two neurodiverse parents who have two autistic children officially diagnosed. Currently, they’re actually toddlers, but they were diagnosed at a very young age, probably around…what would you say about…?

Matt: Just over one and a half or so? Actually, they were both about one.

Lia: So we wanted to put this together to kind of put our story out there and try to connect with other parents and give you guys a sense of community as well as provide you guys with some tips and guidance and information that we’ve learned along the way with our journey with autism. With that said, I think we’ll just tell you a little bit about our story.

Realizing Red Flags and Seeking Evaluation for First Child

Matt: Kind of just dive right in. So kind of going for our personal journey. I think the first time that we realized we had some red flags with our daughter was probably when she was about a year and a half old. And some of the behaviors that we had started to see were that she was kind of isolating herself, playing with toys in non-traditional ways, and very rigid behavior. Those were some of the first things that had us contact Infants and Toddlers to kind of learn a little bit more about what was going on.

Lia: Our initial experience with autism was our first child. Our first child was the one who we went through this process for the first time ever, where we hadn’t really had any real exposure to autism spectrum disorder. We weren’t really familiar with it. So we didn’t really know what autism was to the extent that we do now.

Matt: And I think for me, it was kind of a scary word mostly because I didn’t know. I mean, like you said, I didn’t know what autism was. And even when I reached out to family and friends, no one had really come across it to the degree that we would be able to get great insight to what was put before us. So I think that was kind of a scary time in our lives where there was so much unknown and we had to learn as much as we could as quickly as possible.

Lia: So I learned that autism only affects about 1% to 2% of the population. So it’s very unlikely that you even know somebody who has autism or is autistic. And so for us, I don’t think that I had really known many people other than a relative of mine who was diagnosed autistic, but I don’t spend a lot of time with them. So it was still not very obvious to me. One of the first things that we noticed was that our daughter had a speech delay and that’s what triggered the whole Infants and Toddlers evaluation and they were the ones who ultimately told us that we should get our daughter evaluated. But even some of those initial red flags to us — the lack of eye contact, or just playing in isolation or not really noticing when peers are around — it did seem a little bit unusual, but I feel like at the time I wasn’t too concerned about it until that Infants and Toddlers evaluation came and they basically told us: “Hey, you should be a little concerned.”

Matt: And I think there were even stimming activities that she would partake in that we assumed it was just a standard behavior for whatever age she was at the time. I think mostly the arm flapping was a big one that we noticed.

Lia: Yeah. Cause that’s the thing, there’s some of these behaviors that are actually pretty standard for younger children. So arm-flapping behavior is really normal for infants, like when they’re young, but there comes a point where they outgrow it. And the issue with our daughter was that she had not outgrown it. And honestly, because it was kind of a harmless behavior, I never really cared. I was just like, oh, she’s excited. She’s happy. Woohoo. You know, it wasn’t a big deal. I wasn’t concerned about it. So it was kind of subtle things like that initially. And then there were a few more things that were a little more obvious.

Unexpected Autism Diagnosis for Second Child

Lia: Eventually, our daughter did ultimately go to a Developmental Pediatrician where she got an autism diagnosis, and shortly thereafter, 11 months later we had another kid. So we had our kids back to back pretty much. And the second child also came out diagnosed with autism spectrum disorder, which we completely did not expect that time.

Matt: I think that was a bit of a wake-up call, mostly because we had our one daughter diagnosed with autism and we had gone through all the steps. I mean, it started with the therapies and we had the realization of, okay, we know what autism is. And for our second daughter, she was nothing like our first daughter and we’re like — ‘Okay, no. She’s not autistic. How can she possibly be autistic?’ — And then we had the realization of, oh, there’s a spectrum.

Lia: That was definitely very educational because our second daughter is like the polar opposite of our first child. Our first child was more like the quiet type that stayed in her own little world and didn’t really like to bother other people too much. She just kind of did her own thing and didn’t really pay attention to the kids around her. And then our youngest child, who I thought was neurotypical at the time, I used to refer to her as my neuro-typical baby all the time. Like I was like, oh yeah, I have an autistic child and a neuro-typical child. I could have sworn she was neuro-typical because she did socially engage and she smiled. In retrospect, she didn’t have eye contact really, but I didn’t notice that because of all the smiles and the giggles.

Matt: I think another part was she was very pro or not proactive, but reactive. It was just like she would climb on everything and she’d run around. She was so hyperactive. I was like, okay, she is doing her own thing, having fun climbing on toys so far, whatever. Yeah. It really threw us off a bit. And then the light bulb or the dumb moment of, oh yeah! Autism isn’t just this one thing. It can be a wide range. There can be different levels. And then I think it kind of hit us and we’re like, oh, okay. Maybe she is autistic.

Lia: The second child, the only reason that we were really having her on our radar is because through the program that our first child is in, they automatically will monitor any siblings of a child who’s been diagnosed with autism. And since our second one was younger, they had already been keeping an eye on her. The developmental pediatrician decided to continue to try to evaluate her just in case. And I wasn’t really convinced when we went to that appointment. I wasn’t really sure. I thought I saw a few red flags, but because her behavior was so drastically different from our first child, I initially didn’t think that she would get an autism evaluation. But I did notice that as she got closer to that 17-month mark, that our first child had hit and regressed that’s when we started noticing more of those behaviors.

So our first child initially, one of the things that we noticed was a regression of language at that 17-month mark. And we kind of kept an eye out for our second child to see if something similar happened. And it actually did, like, she hit that mark and it wasn’t so much that she lost language. It was more that she just didn’t develop language. So she was kind of like mute, like non-verbal.

Matt: It was very much a struggle to get her to basically say even the most simplistic baby language — mama, papa. I mean, just very simple sounds. It was almost a struggle just to get that from her. I definitely noticed that there was more of a regression with our oldest daughter where she actually forgot how to do certain actions. I remember one of them that was kind of devastating for us was she used to blow kisses and then she hit that wall and had unlearned that. And I remember that was a really kind of devastating moment for us. We weren’t sure what was happening and it was definitely a challenging time.

Lia: And that’s why we kind of questioned it with a second child because she didn’t have so much of an obvious loss of traits, behavior or language. It was more like she just had a really delayed advancement of those things. So instead of having said mama and papa and then losing it, she just never said it.

Unnoticed Red Flags and Disconnecting

Lia: Whereas our first child had learned those things. And then once she hit around the 17-month mark, she lost it. She stopped saying those words and she pretty much started disconnecting at that point when she was little, there were a few things that we had noticed that in retrospect probably were red flags. So like at the hospital, for example, I remember that she never cried whenever she was hungry. And the only way I ever knew to feed her was because she was sucking on her fingers. So in retrospect, there were these red flags and I just never noticed it cause she was my first baby.

Matt: And we also brushed off that we just had the best baby in the world. She never woke us up crying.

Lia: And would sleep five hours in a row.

Matt: She was very quiet and that’s why we were like, wow, everyone always complains about their kids crying at night. And we got one that has gotten past that. So I think it was a mixture of a few things because it was our first child. Obviously, we didn’t really know, we didn’t have any comparison. So a lot of these things, we just kind of assumed, oh wow.
Lia: Like this is just a really great baby!

Matt: Or we’re really great parents!

Lia: I don’t think it was that one.

Matt: No, no, no, no, it definitely wasn’t, but it was definitely an interesting and challenging time. Just kind of going through that journey through each of the steps after we had gotten the diagnosis.

Lia: The other reason that we had that hesitation with our second child was because she was so drastically different even from birth. Our second child was the polar opposite. Even at birth. She was an extremely colicky baby. And I remember the only way we could ever get her to go to sleep as a newborn — and even probably through like the first year of life — was putting her to sleep in one of those swings because she needed the motion to put her to sleep.

Matt: Right. Oh my gosh. I remember the middle of the night having her in the rocking baby rocker or whatever, and trying to slowly unbuckle her and transport her into the crib without her waking up. And then if she woke up, we’d have to repeat the whole process. But I remember the first few months were definitely a struggle. And I would even say even today, I mean, now that we’re where we’re at. I mean, and she just turned two a little while ago. She’s still very much motion-seeking. Even today waking up from a nap and saying that she wants to be rocked in the chair.

Lia: Those behaviors that we saw when they were initially very, very young are actually still here. It’s just kind of morphed into something a little bit different. We learned a lot from that experience in terms of just how much a spectrum autism spectrum disorder is. You can have two children come from the exact same parent, both of them, autistic diagnosis and just have completely different traits, behaviors, and needs; but all of this experience and the exposure that we had to both of our girls and the entire process that we’ve gone through has really helped us gain a better understanding of Autism Spectrum Disorder.

Coping with the Autism Diagnosis

Lia: But that’s not to say that we didn’t have a hard time initially. That initial diagnosis, the first time we heard “your child has Autism Spectrum Disorder”, it was actually pretty devastating to us. And I know that a lot of times I see online, I see people who say, oh, if you’re upset that your child has an autism disorder, that just means you don’t love them or accept them for who they are, or you just want a different child, or you just don’t understand your child, how they are and all this stuff. They kind of put this negative connotation to a sad reaction to a diagnosis when in fact, I don’t think that’s the case at all. On the contrary, I felt like the autism diagnosis was actually something that triggered a response because we had prepared or envisioned for one future and then were given essentially a different one. And that was the part that was hard. It was learning to cope with the fact that what we had expected would happen, what we had planned and dreamt up in our minds and fantasized about — that’s no longer going to be reality. It wasn’t at all about the fact of our child specifically, we wanted to be different. It was more like the future that we had planned would have been different.

Matt: And I think I was also a little terrified as well. I mean, obviously, we’ve mentioned before that I didn’t really know what autism was, but there were so many mixed emotions. I remember talking to my family and basically, their response was like, oh, they’ll grow out of some of these behaviors. Like essentially don’t worry. Like you’re making a bigger deal about something that in the end, they’ll be perfectly fine without these struggles that they’re having. And it took a really, really long time to have conversations with them where I was basically kind of letting them know that they might not grow out of this behavior. And it could be an ongoing struggle, like making an assumption like that before you actually know what the situation is might not be the best approach. I think I also had a little bit of fear, mostly because I was worried about — I remember I talked to one of my friends because I was worried that if our daughters weren’t able to socialize with their peers, they might not be able to make friends and they wouldn’t be able to have a childhood that I had envisioned for them where they’re hanging out with friends and having a good time. And I remember, thankfully he has a daughter that’s roughly around the same age, I think she was about a year younger than our oldest. And he was like, ‘well, worst case is my daughter will be friends with your daughter’. And it was such a kind of a sweet moment. I was like, well, thanks buddy, I really appreciate you basically saying ‘I’ll make sure my daughter isn’t alone in this world that she’ll have to another friend’.

Lia: And community is so critically important when it comes to this sort of thing. That’s part of the reason that has driven us to create this podcast and create AutismWish because the community really helps you feel that sense of belonging and add that shoulder to rest on whatever you need that support. And it also helps you connect your children to other peers who may be in a similar boat and can relate to it. So we definitely encourage that sort of community bond and feeling. And that’s part of the reason that’s driven us to create this podcast, but I can totally relate to that. Cause I remember when we first got that diagnosis, I think initially we were okay. Right? But it wasn’t until the next day after it kind of hit us and we had time to process everything that it kind of just felt like it hit us like a truck. We were just so overwhelmed with what does this mean? And I remember us holding each other and we were crying and we didn’t really know. We just didn’t know. We just felt very lost and we didn’t know — what does this mean? Is this something that we should be worried about? Is she going to be okay? It was more of a cathartic type of emotional journey that we went through.

Matt: And I think part of the struggle is because it is a spectrum. There is no ‘this is Point A, this is Point B — this is the exact path you take’. In every situation, we are basically staring into the abyss of Google, Googling autism and hoping for a story that would kind of lead us in a path. But it was basically us staring at a blank screen. Like, okay, where do we go from here?

Lia: In retrospect, we understand or realize that most of that anxiety that we had at the time wasn’t so much about — ‘oh no, my child’s autistic, what am I going to do, what are people gonna think about me?’ — It wasn’t like that at all. It was more the sense that we didn’t feel prepared for this, we didn’t feel like we knew how to help our children in the way that they needed to be helped. And we so badly wanted to, but we felt hopeless in the sense that this was completely out of our league. We didn’t know what we were doing. So I always feel like it’s a process that you have to go through. And it’s something that you have to basically just push through with the realization that it does feel initially like there’s this giant storm hitting you of doom and gloom. And it does feel that way. I don’t want people to think that it doesn’t and kind of belittle that experience because it’s an authentic experience and it really is necessary because once you push through that experience and get to the other side, that’s when you get that realization of like, ‘wait a minute, this isn’t so bad’. Once you get out of the storm and are looking back, you’re like, ‘wow, okay, I got this’.

Embracing the Diagnosis and Getting into Their World

Lia: And that’s where getting educated and really learning and finding your community comes into place because you want to get from the point where you feel like you’re weathering the storm to the point where you feel comfortable enough to not just learn and accept the diagnosis, but learn to embrace the diagnosis and learn to embrace your child for who they are rather than trying to change them.

Matt: And that’s what I was gonna say, trying to get essentially to their level where you’re not looking at them as parent-to-child, you’re trying to get into their world. The transition for me was when I was playing with our oldest daughter right before diagnosis. It was parallel play where I was playing right next to her, the exact same thing she was playing. And I was in another world. I wasn’t even in her world. We were playing side-by-side the same toys, but she wouldn’t even look, engage, or be aware that there was another person trying to play with her and engage with her and it was extremely hard. But as time progressed, we learned techniques to try and break down that barrier, to try and bring her into our world or the other way around. She’s bringing us into her world. And then we’re able to kind of move together from there for me. I try to think of it, not necessarily a struggle with autism, but trying to unite.

Lia: Right? Like you’re not fighting autism. I see a lot of representations of autism in certain groups as this monster that we need to beat and destroy in order to reach who our child truly is deep down inside. And I feel like that’s just the wrong perspective to take because your child has autistic tendencies because they are autistic. That’s who they are. It’s in their neurology, it’s in their neurobiology, their brain wiring. It’s no different than us saying, oh, I tend to be a person who gets really excited around X, Y, and Z. It’s not like you can separate that from your brain. That’s ingrained into your personality. That’s who you are. It’s important to learn and understand that you can’t quote-unquote, ‘take the autism out of a child’. That’s just not a thing. You just have to learn to embrace the child for who they are and then learn to use those behaviors and those traits and the quote-unquote ‘quirkiness’ towards your child’s advantage. Learn to help your child learn to love themselves and embrace their own neurodiversity. Be a part of that. And rather than try to change your child, embrace that and try to find a way to use that to the child’s advantage because every kid has their strength. It doesn’t matter if you’re autistic or not, they have their strengths.

Matt: I think as soon as we had that light-bulb-turning-on moment, that’s when we really came together as a family because we were all, probably for the first time, all on the same page.

Shifting Perspectives and Coming Together as a Family

Matt: We had initially been like, ‘okay, we need to find out how to help her’. But then once we kind of shifted to, ‘okay, this is our world, and this is how she’s perceiving things. Let’s have her try and perceive something in a little bit different viewpoint’. And once we had that first connection where she gave us eye contact, or she was responsive to an interaction we were having with her playing with her, I think then it finally clicked for both her and us that we’re not in separate worlds. We are in the same world together. And I think that was a powerful, emotional shift in the dynamic of our family because we became one world, one family at that moment when it kind of clicked.

Lia: And we did that simply by saying, ‘you know what? I’m not going to try to get her to my level. I’m going to get to her level’; and that’s really the difference there. We’re not trying to get her to do things that we would consider, quote, unquote, ‘normal’. We’re just going to get into her world and we’re going to go and learn what she likes and what she wants to do. And we go ahead and pursue situations in slightly different, unique ways that are more applicable to how her brain thinks. And there’s absolutely nothing wrong with that. Once we came to that realization, the second kid was so much easier. Like when we got the second diagnosis there were no tears for that one.

Matt: I think because we had the concept of, ‘okay, we’ve been working with our first daughter with the therapies’. As far as our interactions with her, it was basically, ‘okay, we’ll transition her into our dynamic of our family’. I honestly thought the second diagnosis probably made things easier so we didn’t have to differentiate anything.

Lia: …because we had two children that were now diagnosed. So it just, it felt natural at that point. And it just felt right. Right?

Rethinking Autism and Embracing Neurodiversity

Lia: I just like to encourage everybody out there who’s listening. If you feel like, well, I don’t know, first of all, if you are just suspecting that your child is autistic, or if you have a child who’s already got an autism diagnosis. But if you feel like there is nothing that you can do and you feel like you just can’t reach your child, consider just rethinking the way that you perceive autism. My child is autistic. It’s part of who they are. And it’s just a matter of trying to understand how they work and who they are and how they experience the world. And once you understand that it’s really like learning a different language, but once you learn that language, once you learn Greek, you can totally communicate with people who speak Greek. Initially, Greek sounds weird to you, right? Like initially if you don’t know Greek, you’re like, ‘whoa, what is this? I’m totally confused. I don’t like it.’ But once you learn it and become fluent, then you learn all these new things and new worlds and new customs and all this stuff that you’re like, ‘you know what, that’s amazing. I would have never learned about this entire culture had I not learned Greek.’ So I kind of see it in that way.

Matt: Yeah. It definitely opens up new pathways for your interactions with our children. I remember when we first started, we were playing with water bottles that had food coloring dye in them and our oldest daughter, her only form of play we had — I mean, we had all sorts of toys for — but the only thing that she was interested in were the colored water bottles. And she would take them and line them up everywhere in the house. And at first, we were concerned that she wasn’t playing with any of the toys, but then we got past that. We’re like, ‘okay, let’s do something different with the water bottles. Let’s push them down the stairs. Let’s stand them up on one end. Let’s roll them across the floor’. And then I think that’s when she started to kind of come around and she started to try to do the same things that we were doing with the water bottles. It wasn’t just lining them up in a row. It was making a different design with them. It was all these different things that you can do with a water bottle. I mean, some of them are silly, but I think that was kind of a bridging moment for us because she realized, ‘oh, I can do other things with water bottles. And these strange people who won’t go away are engaging with me with these water bottles’. And then from then on, we just kept learning new techniques through the different therapies that we’re doing, like how to get a little bit closer to her. Right now we function as a family.

Lia: And don’t get us wrong. It is hard initially. It really is hard. I feel like there is a steep learning curve and that’s part of why we’re doing this. We want to make that steep learning curve a little easier to maneuver. But after a while, you do start to get the hang of it. Once you learn to change the way you talk so that they understand you a little better. Once you learn techniques on how to get them to engage with you a little bit, it really does get easier over time. And it gets fun. You start learning your kid a little bit more, but I know that initially, it can be really discouraging. It can be frustrating. It can feel like this is never going to change. ‘What do I do? I’ve tried everything’, but I want to let you know, there is ultimately a way to do it. There’s a way to reach a connection with your child. We don’t know what that connection may be right now, but with trial and error, with a lot of patience, a lot of time, you will definitely be able to make that connection. It just takes effort in patience.

Matt: And I think going along with that, I think our biggest mistake starting off was the assumption that we had to solve every problem today. We have to go set up every therapy today and it’s really not the case. Looking back now, we could have taken our time. I mean, we could have read up as much as we could have, but ultimately putting your health in a bad place where you’re not sleeping, you’re upset, constantly stressed out. I think that that does more damage overall because I think your children would pick up that you’re stressed out. You’re on edge. They’re not having the same interaction that they would. If you breathe, take your time, you’re calm and you look into the different therapy options…Look into trying to build a connection with your child.

Lia: Ultimately all of this stuff, and the combination of everything that we’ve learned throughout this process led us to feel the need to try to create something that would help, not just parents, but the autistic children themselves, which is why we created Autismwish, which is a little charity project of ours where we try to gift sensory and therapeutic items or special interests items to autistic children. And we started that initially as a Christmas project where we gifted 113 kids with items for Christmas and have grown it since then to expand to other things like Valentine’s cards and all that stuff.

Expanding Resources for Parents of Autistic Children

Lia: But now we’re looking into trying to expand into getting more parent resources as well. So this podcast is an important first step for that, but we plan on having and providing a lot more resources, to you guys over time.

Matt: And overall, I think our biggest goal for this is if you do get a diagnosis that your child is autistic, we don’t want to have you go through the same struggles that we did trying to figure out ‘what do I do next? I don’t know what direction to go and I’m just Googling random things, trying to make my life better or improve my current situation’. We want to try and create a place where you can go. You can listen to the different podcasts, get advice, and learn more about autism and how to navigate the waters to get to a better place.

Lia: More importantly, we also want to get you guys to a place where you feel like you accept and embrace this autism diagnosis and you don’t feel like you have to fight it. You don’t feel like it’s this thing that’s sucking the life out of you. Like we’re trying to help change the perception of Autism Spectrum Disorder and give you guys a positive look at it so that you don’t feel like it is the end of the world after that initial diagnosis, because it really is not. I know it’s hard to see that initially, but give it some time and I promise you, it gets easier. It gets better and it gets fantastic once you get that bond with your child.

Matt: Just keep pushing, stay with it. Don’t give up on your child. And I think there’s a brighter tomorrow overall.

Lia: Absolutely. So we’re going to end up adding a bunch more episodes. We’re going to go into a bunch of different things from different therapies. We’re going to have a lot of information about different techniques and tips and provide you with resources throughout the podcast seasons. So just stick around and tune in and we hope that you enjoy it and learn something from this.

Matt: Thanks. Have a good one.

Looking Forward to More Episodes and Information

Outro
Lia: Thanks for listening to Embracing Autism. To review, in this episode we shared our journey as neurodiverse parents of autistic children and discuss how keeping positive and open mindset is critical to parenting a special needs child. As parents who’ve been there, we hope to help you to go from feeling like you’re weathering the storm to ultimately Embracing Autism.
Thanks for listening to Embracing Autism. Make sure to tune in to our next episode where we will tackle questions such as ‘What is Autism Spectrum Disorder? Should I be concerned? And what are common red flags I should be looking for?’

This podcast has been brought to you by Autismwish. Don’t forget to leave us a review on Apple Podcasts and follow us on Facebook at AutismWish.

References
AutismWish Website
AutismWish Facebook
Screening and Diagnosis | Autism Spectrum Disorder (ASD) | NCBDDD
‎Embracing Autism on Apple Podcasts‎
What is “Early Intervention” and is my child eligible?
Study: Autism impacts about 1%-2% of the population
CDC’s Autism Red Flags Modules/Screener
Definition of neurotypical | Dictionary.com