Embracing Autism
Show Notes for Embracing Autism Podcast — Ep. 112

Introduction
Lia: In this episode, we conclude season one with final thoughts on how to go from weathering the storm to embracing autism and how to transform negative perceptions of autism to one of positivity and acceptance.

Lia: 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: and each week, we’ll 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.

Lia: This is —

Lia & Matt: Embracing Autism!

Discussion
Lia: Hi everyone! Thanks for tuning in. This is our last episode of the season, I can’t believe we’ve already made it through what 13 episodes or so including the pilot? So if you guys have stuck around this long, thank you, and congratulations.

Matt: And if you’re tuning in for the first time on this episode, congratulations on skipping ahead!

Lia: Ahead of the curve, that’s ambition. So this season, we really took a deep dive into a lot of different topics. I mean, we went all the way from the very beginning of suspicions of autism all the way to what to do afterward with all the therapies. And I know there’s a lot of information there. So go ahead and take the time if you need to kind of digest all of that. But overall, what we want to kind of focus on here towards the end is just making sure that we were able to successfully give you guys the tools and understanding to get to the point where you feel comfortable with embracing autism and not so intimidated by the idea that your child may be autistic.

Matt: I agree it’s always a one-day-at-a-time and not to become overwhelmed with trying to incorporate everything into ‘I have to do it right now on this day’. So we kind of tried to lay it out as best we could as far as steps to take but obviously they’re steps and not a jump. So make sure you take each step as needed.

Lia: Yeah, I really think self-care is important. I know personally when I got our first child’s diagnosis, I got really kind of obsessed with knowing everything there is to know about autism. And because of that I felt kind of the pressure to just learn as many things, get in as many parent support groups as possible, read as many books as possible, find every resource I can for my child, put her in all the therapies, it was really going full speed ahead. And because I did that it made it harder for me to kind of step back and process everything that was going on, effectively process what the best path forward would be. I didn’t really take the time to sit down and think through what we wanted to do, what our goals were and whether or not our child was actually benefiting from our decisions, or if it may have been too overwhelming. So one of the things that I would highly encourage and I kind of wish that people would have told me in advance is just to make sure that once you are in the world of autism because your child has this diagnosis just make sure that you understand that you don’t have to learn everything there is to know about autism all at once. All the information is still going to be out there so just take the time that you need to process the information to truly learn the information and make sure that you give yourself a break for self-care. On a Facebook group that was for some parents support resources, I actually was curious one day and I put up a poll — this was a self care poll — and so I asked all the parents there — there were several thousand members in this group — I asked them once your child received the diagnosis did any of you experience any sort of weight changes for example? And I put the options of like yes I gained weight yes I lost weight no I stayed the same. I mean overwhelmingly I’d say at least 90% of people total fell into the yes I either gained a substantial amount of weight or yes I lost a substantial amount of weight since diagnosis. And everyone who commented said that it was directly related to the stress of that process. So I found that to be kind of an eye-opening moment because I personally fell into that category as well. The last like year and a half since both of our kids got diagnosed back to back I ended up gaining some weight and I realized that the reason was that I was so focused on getting all the help and support for my child that I could that I ended up putting myself dead last on the list and I just didn’t even bother taking care of myself anymore. So this is something that I see is a very common problem and I’m sure that it must apply to guys How do you feel about that Matt?

Matt: I would agree I mean, in some way I’d like to think it’s — I like to think it’s all muscle but I’m a shape let’s just say a shape, not the right shape. No I agree. I definitely had picked up 10-15 extra pounds, about the weight of our child. Actually, I mean not far off. No, I completely agree because when you are so distracted with something else that seems imperative, that is your main focus. It’s easy to think, ‘okay, dinner, I’ll just grab something quick’. And of course, the thing that you’re always grabbing that is quick is not always the most healthy. It’s great that fast food is quick. But fast food typically doesn’t stand out as being a healthy alternative to kind of just a home-cooked meal or something that you actually put time and effort into actually making. Since we are becoming aware of that, we kind of tried to refocus our efforts to try and put more of a focus on ‘Okay, we need to reflect and kind of improve upon ourselves and make sure that we don’t let this go out of hand’, which means that we’re starting to look at eating more at home and tried to take into consideration our own health instead of just the well being of our kids.

Lia: Yeah, so for the approximate 90% of you that filled out this survey and said this, I can completely relate and I totally understand. It’s like with all the amount of work and effort and the day seeming to just go by in a blur because your time is always tied to something whether it’s a telehealth appointment, an in-person therapy session, a commute one hour here or there back and forth to these appointments that aren’t necessarily close to your home over time that adds up. And then you just find out that by the end of the day, you simply don’t have time to cook and put together a healthy meal at home, you have five seconds to grab something out of the freezer and pop it in your mouth and it’s that’s it.

Matt: And I think on top of that, as you mentioned kind of the day-to-day struggle. It’s hard to project into ‘Okay, well this is our routine, this is our plan moving forward’. So for us, I remember we’d have talks about like, ‘Okay, how can we make this work? How can we get all these therapies to work? How can we get everything we need done?’ And so I mean, while we typically kind of take it day by day, it’s also hard to project a set pattern of ‘Okay, this is our set schedule, we’re good to go’. It seems to kind of always change as things come up — job, life, therapies, everything seems to be something that you’re constantly trying to juggle.

Lia: And I feel something that kind of goes along with that as well is the lack of motivation. And I feel like what it is, for me personally is when you have all of this stuff going on and it just seems like unending that you constantly have more appointments or you have like more bad news. For example, if you find out that your kid ends up having some sort of muscular issue, and now you’re like ‘oh no, they’re going to have to get special shoes’. It’s just every time one of those things add to that pile, you kind of start losing the motivation to even want to bother with self-care, you’re not really motivated to exercise, you’re not really motivated to try to cook a home-cooked meal, and things like that. So I can absolutely relate to that. We’re trying to make some lifestyle changes and be more purposeful with what we do. Since there is very little free time available to us, it’s more about making the time that we do have intentional so that we are doing something productive with it even if we don’t necessarily feel like it. I know for me personally, that has been the hardest part of time management.

Matt: I mean, we always talk about having a budget for your money this kind of works on that side as well. Make sure you have a budget for your time so you’re not doing unnecessary things right — I’m not staying on, I don’t know watching TV for six hours or something that doesn’t benefit me in any way. We have a set schedule and things that we have to accomplish and then just trying to manage the time that we have to get everything we need done.

Lia: Yeah, that’s actually one of the reasons I personally got into listening to podcasts because through a podcast you can get productive information while you’re doing something else so you can multitask you can listen to this while you’re cooking you can listen to this while you’re in bed getting ready, it’s a lot easier way to consume information so I personally have gotten in the habit that when I go to bed at night, that’s when I pop in my podcasts or my audio books or whatever it is that I want and that is my self-care moment. So I kind of wind down for the day and I’m like ‘okay, I know it takes me an hour or two to really get comfortable and go to sleep so this is where I pop in my headsets’ and then I just relax. So even if you find a way to do it whether that’s this podcast or a good book or something just make sure you take the time to recuperate.

Matt: And of course, we’re not saying that taking care of our kids is a chore by any means. I mean we love them both, but we’re saying that it is important to also take care of yourself because you’re important too. Lia had given the analogy that sometimes the captain of the ship needs some rest as well otherwise you’re going to crash into an iceberg… pretty sure that’s how the Titanic Captain crashed right? So just make sure that you take some time for yourself and just recover mentally and physically as well. And then you’re better off to be a parent and you’re better off to tackle all the upcoming challenges that you might face from the day-to-day.

Lia: And make sure you are well-rested. That’s also been personally really hard for me because I have insomnia and that’s an ongoing issue. But being well-rested gives you more patience. So self-care is really important in that area. If you’re the type of person that if your child is having a meltdown and you just can’t handle it and you’d go off on your kid or if you get really upset, that’s something that you may not even know the reason why. Step back and think about whether or not you’re getting enough rest, if you’re getting enough sleep throughout the day, because that could easily alter your sensitivity to that sort of thing.

Matt: Yeah, have a nap!

Lia: If you can. And also, don’t forget, we do make this podcast an informational thing about autism, right? So we’re letting you know all this information, which makes me think that you are the type of parent who is looking to learn more about it and you’re really getting involved in this aspect of your child and you’re trying to do the best you can to support and accept your child. But don’t make it all about autism either. That’s the trap that I almost fell into towards that beginning where I was just getting really into learning everything I can. But it’s important to note that your child is not autism, you know, like your child is more than autism; they’re more than an autism diagnosis. They are not just autistic, they’re still a four-year-old kid who likes to play with cars, or maybe they’re a 16-year-old kid who’s having his first crush at school like they’re still going to go through these normal phases for the most part. If you have an intellectually delayed child, they still have a lot of things that make them uniquely them despite the autism, and we shouldn’t focus all our energies on that and lose sight of the child, our child who’s really there.

Matt: And I would think also taking an interest in something that they particularly enjoy. So for one of our daughters, she’s obsessed with rubber ducks, and must have, I think she has 21 or something. But even so she’ll love lining them up on the edge of a window, and she says that they’re on a branch. And so my wife and I, we make silly songs, we’re basically identifying the different ducks in that order and she absolutely loves it. And she will request that we sing basically her duck song for the order that she’s created them and we’ll sing with silly voices and things and she absolutely loves it. So I mean, it doesn’t take a lot of effort to enjoy the small things that they find interesting. I think that that makes all the difference in the world because at the end of the day, when they get a little bit older, and they think of ‘Oh, mom or dad was super stressed out because I was autistic’. I mean, we don’t want that to be the case we want them to remember ‘Oh, I remember when mom and dad made that stupid song about my ducks being in a certain order’. And they’ll think of it, I think, fondly where they’ll be like, ‘wow, okay, I was really loved that my parents came up with a silly song because I love ducks.’

Lia: And if you have a child, for example, who’s obsessed with trains, I know where we’re at, there’s a local railway museum that has trains there. If your kid is obsessed with something like that, or that’s their special interest, I should say, then take them on a date like you would with any typical child. Like you know how a lot of parents have the mommy and me dates or the daddy and me dates and vice versa. Just take your child out like you would even if they didn’t have autism spectrum disorder and go do their special interest item thing. If they are fascinated by I don’t know, maybe flowers, bring them to like a local garden. Just incorporate their special interest into that date night that you’re doing with them. And don’t forget that they need that relationship and that bond with you too. They’re not just a ‘disabled child’ that can’t be talked to and just needs therapies and I just need to fix them — that’s not the case. They are a child who needs love and support and a relationship and a bond with their parent just like any other neurotypical child would.

Matt: And the other thing is, kids are basically mirrors of ourselves. Mostly, we’ve noticed this when our daughter is going to her little — we call it pre- preschool. It’s like an early achievements class to help her with social interactions. Yes, I’m not sure if that’s the best way to describe it.

Lia: Yeah, that’s preschool to prepare you for preschool. Right? Right.

Matt: So we’ve noticed that when she’s in her school, she’s happy as can be. And we notice that she’s actually saying things that we say to her. In one instance, one of the little boys was crying and our daughter actually comforted him saying, ‘It’s okay, I got you.’ And that’s the exact same thing that I do when our daughter’s upset; I kind of pick her up and I kind of say it’s okay, I gotcha, you’re okay, you’re okay. So something as simple as how I comfort her is something that she’s picking up to comfort other children in her class. And I think that if you are able to find the enjoyment that your child is seeking through whatever their special interest is, or whatever they enjoy, they’re going to reflect a more positive attitude in all walks of life that they do. So you might see a little glimmer of when they’re interacting with someone else, a sibling, a relative that they say something that you have said to them in comfort, or it’s reassuring because it shows that they are incorporating the best elements that we have to pass forward. So I would strongly encourage that you pass on positive elements as opposed to upset ones where they’re repeating something that you might have said out of frustration.

Lia: Yes, if your child is anything like ours, they have echolalia and they practically record what you say. So make sure what you say around them, you’re comfortable with hearing it on repeat. Okay, just a little tip there. I know I’ve had a few close calls. The other thing that comes along with it is if you are placing all this time and attention and effort on your child, one, like we said, make sure it’s not all autism-related; make sure you’re doing some just typical child things with them. And number two, if you are a parent of multiple children, I really also stress that you make sure that you spend enough time and connect with your other children as well, whether they’re neurotypical or not, but particularly neurotypical kids who tend to get left out when all the attention is put on the autistic child. I think that’s something that we initially struggled with prior to getting our second child’s diagnosis.

Matt: Right, as soon as she was diagnosed with autism we were like, ‘okay, we got two kids in the same camp’. So it’s not as big of a fear of ours. But I absolutely agree. I think that if you do have another child that is not autistic, make sure that you also dedicate the time and effort to doing the same effort and enjoy the same activities with them that they enjoy. Otherwise, when they get a little bit older yeah, they’ll absolutely think back to ‘mom and dad never had any time for me, because they were so busy with everything autism related’. So I think just having a nice balance in your family structure will be beneficial down the road as well.

Lia: Yeah, I can’t tell you how many times I’ve heard people who have had some sort of sibling with a disability and they’ve said things like, ‘well, my parent was so involved with my sibling with a disability that they actually didn’t even remember that it was my birthday’, or ‘they didn’t think it was important for them to come up to my father-daughter dance at school’ and things like that, that leave a long-lasting impact and can also build resentment between the siblings. So that’s another thing to just remember and keep in the back of your mind, if you do have multiple children, just to make sure that you spend that quality time with each of them. And try to remember that although your one child has a lot of your time and focus, you need to remember the other child as well. And I know that it’s a difficult balance, because not only do you want to make sure that all your children are receiving essentially equal time and attention and affection, but you also need to balance that the time that you’re giving to your autistic child is not just medically focused time, you want to make sure that that time is also productive bonding time. So it’s complex, it does get difficult, but it’s something that I think needs to be absolutely on the top of your priority list.

Matt: I think so, at least have it in the back of your mind or have it on your radar. So keeping track of when you might be spending too much time with one child and not — I don’t want to say neglecting, but for lack of a better word, slightly neglecting one at the expense of the other. As long as I think you have it in the back of your mind, and you are aware of it and it’s not something that you just put on the backburner. I think that you are in better shape. And hopefully, we’ll be able to kind of allocate your time a little bit better between multiple kids.

Lia: This has been hopefully a great season for you guys. I’m hoping you got a lot of stuff out of this. And we’re hoping to continue bringing you more information, more resources, more guidance and tips in future seasons. One of the little pieces of advice or resources that I want to leave for you here in this episode before we close out the season is if you have a female child who is autistic. Both of our children are autistic and through a lot of research and googling, I found that autism actually presents quite differently in women and females than it does in males. Women actually get very underdiagnosed in autism and the autism testing that’s currently used. The current testing model is actually formulated to test men and boys rather than women or girls and that is why the ratio of how many diagnosed people are boys versus girls tends to be very exaggerated. So it seems that there are a lot more boys with autism than girls who are autistic when they’re not actually sure that is actually the case. And so if you do have a daughter with autism, or if you happen to be an autistic female, there are two specific people I would recommend that you look into to learn more about that. Both of these resources can be found on YouTube, just go on YouTube and type in the search bar lookup specifically somebody called Sarah Hendrickx and that’s Sarah with an H and then HendrickX is H-E-N-D-R-I-C-K-X . It’s kind of a strange last name, but look her up. She is somebody who is in the autistic research field and she does a lot of presentations. She’s published some books and she works a lot with that. And interestingly enough, she actually ended up getting an autism diagnosis herself in late adulthood and she didn’t realize she was autistic until later on because of the testing discrepancies for men and women. So that’s an interesting resource. And then there’s a second one that’s also very good and this one is Professor Tony Attwood. It’s Tony with a -Y. Go ahead and look them up on YouTube. And he’s got a lot of talks, speeches. And he also has books as well that describe in detail the differences between autism within a boy and a girl. And he focuses specifically on how autism presents itself in girls and women versus men, and it’s very implicit, it’s very difficult sometimes to notice the differences. So because of that a lot of women don’t get diagnosed. So that was really interesting. And if you are interested in that information, I highly recommend that you watch their videos.

Matt: I’m not sure if it was Attwood, but I think he was saying that they would — the females — later in life when they ultimately become diagnosed with autism; it’s usually that they would be diagnosed with lots of other things. And then at the end of the day, they realize, ‘Oh, this all falls into the same category as autism’, that it was just they thought it was an isolated diagnosis for other things. But it turns out that it was autism all along.

Lia: Yes and the reason that I recommend looking into this as well is because studies have shown that autism has a strong genetic portion to it. So they don’t exactly know what the cause for autism is yet, there really is not enough research out there. Anybody who tells you they know what causes autism is not telling you the truth, because the truth is, there’s not enough evidence out there and all we really know is that it’s mostly genetically linked. Although there are some environmental factors, it is mostly genetic. And so he takes a look at some of that background and what I’ve noticed is that a lot of people who listened to his talks and that of Sara Hendrickx’s as well end up kind of self-reflecting and finding out that, ‘hey, maybe I’m autistic as well’, and didn’t even realize it because the symptoms and signs are so different for men versus females. So if you’re curious, and you think that maybe you’ve had some autistic traits, or something like that, and you were never really sure where to go with it from there, those are also some resources to look at and see if you feel like you connect with any of what they’re saying.

Matt: So to pivot a little bit, one of the ways that we have ultimately embraced Autism is we’ve tried to set up a small charity that’s called Autismwish. Its goal is to pair autistic children with sponsors and trying to purchase therapy-related or sensory-related items of an Amazon wishlist. We’re still in the infancy so there’s lots of opportunities to kind of grow and branch out from there. And then that ultimately spurred us on wanting to contribute and provide resources to the general public because we remember when we first got the diagnosis, we really didn’t know what to do, where to go. And that’s what kind of had us start this podcast. So we could try and reach out and help each individual who was in the same position that we were just kind of struggling, not really sure, ‘Okay, where do I go from here’. And that has kind of been in a way therapeutic self-care for us as well.

Lia: I think some people have different outlets and different ways of providing self-care. And I think for us that way has really been also through this podcast and through AutismWish. Because we are the type of people that feel better if we help other people and are knowing that we’re helping other people feel better. So it’s kind of like it’s partially selfish in the sense that this is our self-care. But at the same time, we want to make a real impact and we know what it’s like to be in your shoes. And we had hoped and wished that there was a resource for us at the beginning and there really was not so we wanted to make sure that we could provide that resource to everyone else. And for us, that was kind of like a way of self-care, but also of care for the community.

Matt: And you know, I just realized that now I was like, well, we take our kids to all these therapies that I was like in this podcast, and I guess AutismWish as well, is kind of therapy of sorts for us and I was like okay, that’s kind of an interesting roundabout way to view the therapy world.

Lia: Yeah look, we are our own therapists. There we go. Man, I better pay myself well. That’s scary. Oh goodness. So yeah, we’re just going to wrap up here now with a little bit of housekeeping. Unfortunately, this is the end of season one, but fortunately, we will have a season two around the corner. Season two we are planning on doing more sensory-focused podcast episodes and will go into a little more detail so stay tuned for that. In the meantime, please be sure to like us on Facebook and Instagram. We have the links and information in the podcast description or podcast notes, we will have our information as well for our website and everything else there. So please take a look and give us a like or a follow. And if you’re able to please, please, please leave us a five-star review. If you enjoyed our podcasts on the apple podcasts that would help us a lot with being able to support more autistic children through our charity project.

Matt: And if you have any recommendations on anything that you would like us to speak on in the future as well please feel free to leave us a comment or through Facebook, you’d be able to leave a comment or get in touch with me as well.

Lia: And I will keep updating the notes to make sure that there’s contact information there as well so that you guys have everything up to date. And you can reach out to us. Let us know what you want to hear on future episodes and how we can best help you guys out.

Lia: That’s it for Season One.

Matt: The finale!

Lia: Thanks for listening.

Matt: Thanks guys.

Outro
Lia: Thanks for listening to embracing autism. If you liked what you heard, please leave us a review on Apple podcasts and help us spread the word. You can also like our page on facebook.com slash autism wish. We hope you join us in season two where we will further explore the sensory system and its connection to autism. This has been Embracing Autism!

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References

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