45. Navigating Parenthood with a Child on the Autism Spectrum with Rob Gorski, The Autism Dad
In this episode, we welcome Rob Gorski, Founder of the Autism Dad, who shares his experiences of raising three autistic children. Rob offers an unfiltered view into the challenges and victories encountered in autism parenting that offers parents with a sense of solidarity and practical insights. His stories resonate deeply with those on a similar journey, making this a crucial listen for parents seeking understanding and guidance.
Rob dives into the nuances of managing daily life with autistic children, discussing topics like picky eating, sensory sensitivities, and the importance of parental self-care. His approach to these topics is both relatable and pragmatic, offering valuable tips and strategies. This episode is a must-listen for anyone looking for real-world advice and the reassurance that they are not alone in their autism parenting experience.
Resources in this episode:
Rob's Links: https://theautismdad.link/
Join the Nourishing Autism Collective to start getting nutrition support today!
Follow @AutismDietitian on Instagram
SUBSCRIBE ↓
TRANSCRIPT
[00:00:00] Rob: I feel like we really need to normalize that it's okay to not be okay. Like you're allowed to be depressed. You're allowed to be sad. you know, just, just breathe. Like it's, it's going to be okay. Take a step back. You're allowed to be overwhelmed. It's totally fine. You're allowed to feel whatever you feel does make you a bad parent Just you know what you choose to do with it or how you deal with it I think is more important than what you're feeling in a moment and Allow yourself that grace to not be okay for a little bit or to need a break or to take a knee whatever it is That you got to do to get back up and keep moving.
[00:01:00]
Hello hello, welcome to season two, episode two of the nourishing autism podcast. I have to say it feels so good to be back recording these episodes. I especially love the guest episodes I have because it gives me the opportunity to catch up with old friends and colleagues, or it gives me the opportunity to finally meet someone as close to in-person as I can after knowing them online.
And for today's episode, my first guest of season two, I got to catch up with an old friend and. That's Rob Gorski, or as you might know him, the autism dad. While, this was only our second time meeting live. We've been in touch on Instagram for what feels like forever. And during this episode, Rob and I talk about what it was like for him, raising three kids on the autism spectrum and how his account grew from a private blog to now a wildly successful podcast and online presence showing up and supporting [00:02:00] parents of kids with disabilities and spreading his story and deeply empathetic and powerful insight. I know you're going to love this episode. I also wanted you to know that Rob and I are going live on Facebook on the evening of March 12th, and we would love you to join us.
So be sure to mark your calendars. Without further ado. Here's my episode with Rob Gorski, the autism dad.
[00:02:20] Brittyn: Hi everyone and welcome back to the Nourishing Autism podcast.
I am so excited today. We have Rob here and Rob, I feel like you're an old friend of mine, even though we only connected like a year ago when I was on your podcast. But Rob runs the Autism Dad. So many of you probably know him. Your account has always been big, Rob. Like you just blew up recently too. I saw on Facebook, you got like 30, 000 new followers in a month or something,
[00:02:46] Rob: so, well, I, I never really put a whole lot into the social media side of things. Like I was always on my blog. I didn't want to be in front of people and then this year I just decided like, in order to grow the business, like I have to evolve. And so [00:03:00] I started really, really putting myself out there , and it works.
I'm trying to meet people where they are. Cause you know, everybody's, everybody consumes this type of content in different ways. And so I try to hit as many as I can without overextending myself.
[00:03:16] Brittyn: Totally. I mean, I love everything that you share and I'm not even like your. Ideal audience, but everything, cause you're talking to parents who have kids on the autism spectrum.
I mean, I have my brother, but every single thing that you share, like you're one of the people where if I see you pop up on my feed, I'm pausing and like, I'm watching. So I love everything that you share.
Rob, tell us more about you and your connection to autism and why you started the Autism Dad, all the things.
[00:03:45] Rob: So I guess long story short, you know, I have three autistic kids. My oldest was diagnosed in 2005 and he experienced a very rare form of autism called Childhood Disintegrative Disorder, where he, he was actually advanced for the first [00:04:00] Three or four years of his life.
And then it was like right around his fourth birthday, he experienced just massive, massive regression. It feels like it was overnight, but like in hindsight, it probably wasn't. We just didn't, I think there's a threshold that you reach where you can't deny it anymore, if that makes sense. And I was just really struggling to cope with everything.
And you know, I was, I was a fire medic and so like I had all kinds of. Stuff that was going on in my head from the things that I saw back then and whatever. And I was just really, you know, trying to process everything in the best way that I could. And so I ended up. Creating this website called, it was lost and tired back then, but it's the autism dad now.
But the idea was that it was private. Nobody would ever read it and I would just emotionally dump everything that I was carrying and, and use it as sort of like a, a digital journal. Right. So, started doing that. It was [00:05:00] really helpful for me 'cause I that I found that, that was like typing the stuff up on my phone and just hitting published.
That was it. Right. And I felt safe because I thought no one's ever going to read this. And I was not private and I started getting comments and they were really supportive comments. Like parents were like, Oh my God, like, I didn't know there was someone else out there going through this or thought I was the only person that felt this way.
And, you know, I guess what happened was there was no one else talking about this back then. And so when I started talking about it, I, like I filled this vacuum where it became, if you searched autism, you found my blog, which is great if you're trying to do something like that, but not if you're trying to have, like, you know what I mean?
Like you get kind of put on a map with, without intending for that to happen. And you know, what I, what I found was that it was a resource for parents. And I found that it was therapy for me [00:06:00] because I could write whatever it was I was feeling and I could walk away from it and I wouldn't carry it with me.
I used to think of it like you know those birds that walk on the sand on the beach where they have like those balls of salt that collect around their ankles, right? I felt like all the stuff that I was struggling with was, was weighing me down.
And so this was just a way that let me unload that. And it was even a, it was a bonus that it was, it was helpful to other people, you know, and, and it just became like this beacon for parents and it's just sort of grown into what it is today, you know? And so it was, it was, it was unintentional, but it, kind of grew into what it, what it is
[00:06:39] Brittyn: now.
Could you imagine going back to, I don't, it sounds like your son was diagnosed in 2005. I don't know when you started it, but like, if you could have had a sneak peek 15 years into the future, like what this was going to look like.
[00:06:52] Rob: I, it's funny because I remember thinking like, when I started getting comments and I realized that people were reading it, I was [00:07:00] like, Oh my God.
It's like, I felt so exposed because. It was one thing to like write it in a place that was private that you thought no one was ever going to see. And they weren't, they weren't like bad things. It was all like the stuff I talk about now. Like, it's not bad stuff. It's just, it's just things that parents, for whatever reason, feel like they can't say or they can't feel or whatever.
And I was saying what other people were thinking. And that was validating for people. And so I just sort of, I found that it became sort of like this symbiosis sort of in a way. They were like, I was, I was able to turn my pain into something that was positive for other people and help them to navigate things that I was struggling with.
And I aired all my mistakes, which were quite a few, you know, and help people to avoid all the things that I, you know, fell into or that I struggled with. And, you know, it just became kind of a lifeline for me. I think honestly, that's why I survived it [00:08:00] because it was, it's, it's been rough. It's been rough.
Totally.
[00:08:03] Brittyn: I mean, it is when you receive an autism diagnosis. A lot of times for parents, it's kind of just like, okay, here's the diagnosis, now go write your own guidebook. There's not a lot of resources out there, and if there are, it's maybe built by therapists and not by parents. Yeah, and there's something that's really special about having another parent be like, no, you know what?
I've been through this, I've felt this. I've, you know, here are my mistakes, it's gonna be okay. And it's going to be okay.
[00:08:34] Rob: Exactly. Yeah. That's, that was, that's, that was a big thing that I wish, and like, I would hear that from my parents and family and stuff like that, but, but it's, it's different when you hear it from somebody who has been through it.
And I never had that. I had no one to look up to. I had no one to reach out to. I didn't know another person that had a diagnosis, let alone three, you know, and, and there is something really validating about what you're [00:09:00] saying. I, I totally agree with you.
[00:09:02] Brittyn: Well, I mean, that brings us to, I mean, a great point, you know, 2005, the services around autism were just non existent, non existent.
So my brother was diagnosed in 97. And so my mom was kind of navigating that, but she was in it. She, she's a psychologist and she kind of knew the system, but still it was hard. So coming in when. You also don't know the system at all and trying to navigate in a time when the services are just nothing. I mean, how, how did you navigate the diagnosis early on?
[00:09:36] Rob: There was a lot of sort of life shifting things that were happening at all at the same time. And when he got his diagnosis, I, well, I mean, like I cried at every one of all three times because. Not because I thought it was like a death. Well, I didn't understand it the first time around and When I would look things [00:10:00] up back then like prior to 2010 All you would find are like Rain Man references or you might be able to find like videos of like, you know just horrible meltdowns that really kind of traumatic things that people were going through and I just thought like oh my god, like that's that's what his life is gonna be like and that's that's horrible I don't want that for him and and he regressed so it was like there there weren't Resources for him specifically, because he never fit a category and it was really, it was really difficult because, you know, he ended up with a lot of other health issues.
And so it became sort of like, you try to focus on the autism related stuff, but then there's health things that come up. And, and so you're, you're having to prioritize and triage constantly. And then you have two other kids who end up being diagnosed. And so then it just becomes like this constant triage.
And you're right, services were not Nearly what they are today. And [00:11:00] it was, it was difficult to find anything that was helpful in a way that was actually helpful, if that makes sense. Cause there's, there's all kinds of programs that you could get involved with that, you know, drive you places or remind you of appointments, but like, I didn't need any of that.
I needed someone to like, tell me what to do or. You know, I'm struggling with my mental health as a result of some of this stress, like, I need help with that kind of stuff, and there just wasn't.
[00:11:27] Brittyn: Yeah, it's like, well, first of all, the services for kids to get the support they needed, and then, and thinking about parents, of like, what supports you need navigating a diagnosis, it's like, people hadn't even gotten there yet.
[00:11:39] Rob: Yeah, there was, there was nothing. I mean, it really was a vacuum. It was scary. It was definitely scary.
[00:11:46] Brittyn: And we've come a long way. There's still a long way to go, but encouraging at least to see kind of the direction we're headed and people like you online sharing their experiences who aren't healthcare providers, but also healthcare providers who are [00:12:00] learning, hey, these are the services that help people.
So we're getting there, but
[00:12:04] Rob: we need more. Yeah, it's, it's, it's, I think it's being able to relate to somebody, you know, there's a time and a place like practitioners are vital. Like we have to have them and they serve a very important role in this journey, but they're, they're not necessarily there to make you feel better.
Right. Like there's, and talking to other parents or talking to people like you who have firsthand experience, like with your brother. Is validating, it's, it's a connection that you can't get really anywhere else. And it's something that I think we all need, and sadly not everybody has it. But it makes all the difference in the world, totally makes all the difference in the world.
Yeah,
[00:12:41] Brittyn: absolutely. Well, when we were on your podcast, we talked a little bit about picky eating and nutrition, and so I would love for you to share your experience growing up with three kids on the spectrum.
Did you see that any of them struggled with anything? Picky eating, or [00:13:00] what kind of experience did you have and what did you find helped .
[00:13:03] Rob: picky eaters, all three of them were and in different ways. So it wasn't like there was never anything that would be like a one shot deal. Right. So it was everybody had different needs.
And I remember. Like having to pick like the seasoning that you can see out of pasta sauce from my oldest because everything had to be it had To be straight red. There couldn't be any other colors in it they were very sensitive to what it looked like the texture the shapes like we've talked about before like They could they could tell the differences between batches of things, right?
Or if the packaging would change that like we're not gonna touch it because it looks different, you know And it it can still be a problem even now They're a lot better now than what they were back then. And I, and I think the only thing that ultimately really, really helped was like we talked about on, on my podcast where. They [00:14:00] started becoming involved in the process, whether it was grocery shopping and then it became the food preparation. And I didn't understand why that worked until you explained it to me. But now it makes total sense. And, and that made, that made a significant difference because they weren't being overly exposed all at one time.
They were able to get that exposure to the new foods. And then I think they became curious about. What it tasted like rather than it becoming this, like, try something new. It was like, we want to try this because I made it. You know, and it smells good or you know what I mean? And so I think that was probably the most positive thing that we found that that worked and now I mean, they're baking, they're cooking, they're doing all kinds of stuff, you know, now and I would never have imagined that being possible back then.
[00:14:51] Brittyn: It's really cool to follow your son Gavin's cooking. You share a lot about him cooking and baking. It feels like [00:15:00] he's really found a nice. Rhythm for himself in 2023, right? He just kind of yeah getting into all of this this year It's so you've been sharing photos the most recent one you shared that I saw at least was the cookies that he had made Yeah,
[00:15:15] Rob: yeah, those are the last thing that he did.
[00:15:16] Brittyn: Yeah Crack me up. He's like, there's two that were not here because I did drop them on the floor Yeah, but he was like, oops
[00:15:25] Rob: another drama. Well, and then like he he's very careful about never Leaving out facts that he feels are important and so he wanted people to realize that there should be more if they counted them
I don't know what what his thought process was, but he's like they need to know two of them fell on the floor So they're not all here. I'm like who's gonna but you know, it's a cool thing It's such a cool thing. Yeah, so life skills
[00:15:49] Brittyn: Exactly. So, well, what I see too, he wouldn't have found that he enjoyed this.
Had you not given him the opportunity earlier on to be
[00:15:59] Rob: [00:16:00] involved. I was very, especially with him because he is. He does have more challenges in his life. I didn't allow him the ability, like the, the space to, to try to do some of those things, just because I was so afraid that he was going to hurt himself or that he'd, you know, not pay attention or forget something to burn a house down or whatever.
But what I found is that he is way more capable than what I had given him credit for. Back in the day and allowing him that space to make mistakes, but in a controlled environment and, and learn from them. He's found something that helps him to decompress. I mean, he's not looking to like open a bakery or anything like that.
He doesn't do this because he thinks they taste better than anybody else's, but it's like I go to the gym for my self care. He bakes, that's his thing. And I think that's great. You know, he's trying all kinds of new things. It's pretty amazing to see how far he has, he has come.
[00:16:55] Brittyn: I love that you're sharing this because I think it gives a lot of parents hope [00:17:00] for what can happen in the future for their kids too. You know, I was at a conference a few weeks ago. It was the U. S. Autism World Conference. It was actually held here in Colorado and Temple Grandin was the keynote speaker.
She opened her presentation up at the end for people to ask questions. And just out of curiosity, I asked her, was she ever a picky eater? And does she have any advice for Those who are picky eaters, and she said she wasn't she was never a picky eater, but her best advice was to get kids involved with cooking and involved in prepping foods, whatever that means, and whatever they're comfortable with, and how to kind of ride the line of helping them expand their sensory exposure, but also not putting them into overstimulation, which is I mean, exactly right.
And so, it can be as little as you measuring out a cup of flour and them dumping a cup of flour. Like, it [00:18:00] starts super small. Do you remember, like, how you involved them in the beginning? Or what they felt comfortable with?
[00:18:06] Rob: There got to be a point where I think we created like menus because there was a lot of like indecisiveness to, they would get stressed out over trying to pick what they wanted for lunch.
And so we'd create menus and they would help us come up with ideas, you know, as, as, as far as like what, what was going to be on a menu. And so we, we'd have like three choices. Because too many choices was just a problem. And, and then, you know, if there were things that needed to be created that weren't, like, out of a box, like mac and cheese or chicken nuggets or something, then, you know, I would take him to the grocery store with me and we could pick the stuff out.
And, you know, so he was able to pick out, like, the color of the box and, you know what I mean? So, like, there's all these kind of things that make no sense to us as people who don't maybe experience sensory input that way, but For him, the color of the box mattered, you know, and so I wouldn't have thought that.
And so when he comes home and it's a red box, then [00:19:00] he feels like, okay, I want to eat this because it's red or something. And that, that was, I think what kind of sparked that whole journey into that. And, and even things like buffets, you know, where they were able to pick from things instead of having it chosen for them, they just became curious.
About stuff and you know, I think I think a lot of times like parents are concerned and I get it and I think sometimes we maybe try to push too hard on things and it can be counterproductive. And, you know, so I, I, I tried not to, I tried not to do that, but I think it was just sort of little bits at a time and follow their lead, but it was all progress.
It was all progress.
[00:19:48] Brittyn: No, totally. Food is one thing that's incredibly overstimulating and oftentimes there's, Not a lot of input that kids get to have on it. And [00:20:00] so when they get to choose one small thing and be like, Hey, I have some control in this. Cause when it feels super overwhelming and you don't feel like you have control, it's easy to be like, absolutely not.
I'm not trying. thing that feels out of control and overstimulating, why would I, but when we give them a little bit of input, whether that's, Hey, here's two options. What would you like on the menu for lunch tomorrow? Or Hey, here's a red box and a blue box. Which one do you want to choose? They get to feel like they have that input and involved in this, even if it's just a choice and it's not them getting their hands dirty.
That's still a really great thing for kids to have
[00:20:36] Rob: input. It's like, it's empowering, I think, in a way, and it helps them, it helps them to, to feel like they have control without, without it being overwhelming. You know, because I, like, we could give too many choices and it would be worse than if, you know, whatever, but it worked out really well.
And I think there's just creative ways that you can, you can just [00:21:00] help your kids to, I think, become more curious or more open to trying new things and, and, You know, forcing, forcing was never something that worked for us. We just, we just never, I had to fight the urge a lot of times because like there was, you know, weight gain issues or, or like underweight kind of things.
ultimately I think that the approach paid off and they're doing, they're doing pretty well now. It's so
[00:21:24] Brittyn: hard not to put that, like, pressure on your kids to try things, because at the end of the day, the motive behind it is that you just want them to be healthy, you just want them to eat, you want them to get the nutrients they need, and so it feels really to then pull back.
And not put pressure on them because you want them to get the nutrient.
[00:21:45] Rob: And when you go to the pediatrician and they're like, well, they're significantly underweight, you know, we got to do this, you got to do this. It's, you know, you feel like it's a lot of pressure, you know, because you, you feel like you're failing as a parent.
You feel like you're letting your kids down or you're not, you know what I mean? [00:22:00] And so, so you try to. I think overcompensate sometimes and that can be, uh, that can be that can be problematic too.
[00:22:07] Brittyn: Yeah, there is a lot of pressure from everyone and the internet these days and practitioners. There's just a lot of a weight on your shoulders for sure.
One thing that I would love for you to share, there was a reel that you posted recently and you were talking about how as an autism parent it's okay to not be okay and I wanted you to share that just as a little bit of validation for some parents and then I want you to share how we can find you and connect with you.
[00:22:35] Brittyn: Sure,
[00:22:36] Rob: sure. So I, I think there are, there are unrealistic expectations that we put on ourselves as And I think all parents do that, but I think to a larger extent parents raising kids with disabilities, whether it's autism or whatever, and, you know, we have very real human limitations. And I think a lot of times we perceive those [00:23:00] limitations as shortcomings or failures or whatever.
And, and then we just beat ourselves up, right? Or we're judged because people don't understand it. There's all these. All this input that we're getting from everybody around us. And we feel like we have to always be strong. We have to always. You know, hit the mark. We have to always know what to do. And there's so many different things that come up throughout the day that we have to try and figure out that we have no idea what we're doing most of the time.
And, and I feel like we really need to normalize that it's okay to not be okay. Like you're allowed to be depressed. You're allowed to be sad. You're allowed to be overwhelmed. You're allowed to feel all of these emotions that you feel doesn't make you a bad parent. It doesn't make your kid. Like a bad kid because you're overwhelmed by their behaviors or something.
It just makes you human and it makes them human. And I think if we can just acknowledge that and normalize it, then we can take some of that stigma away and parents will be more comfortable asking for help when they need it, right. And instead of trying to like push and push and push and push, push [00:24:00] until they burn out.
You know, and, and then that's, that's a huge problem. You know, you're working from a deficit that you can't get yourself out of. And that's sort of what sparked that, that whole thing. I just hear from parents all the time that, that feel like they're the worst parent ever because they can't get their kid into therapy or they can't get this, or they can't do this, or their kid isn't talking.
And it's like, you know, just, just breathe. Like it's, it's going to be okay. Take a step back. You're allowed to be overwhelmed. It's totally fine. You're allowed to feel whatever you feel does make you a bad parent Just you know what you choose to do with it or how you deal with it I think is more important than what you're feeling in a moment and Allow yourself that grace to not be okay for a little bit or to need a break or to take a knee whatever it is That you got to do to get back up and keep moving.
I mean, that's
[00:24:45] Brittyn: incredible
[00:24:46] Rob: life advice I wish I'd I wish I had followed that a long time ago But you know you live you learn and hopefully people can you know, avoid some of those pitfalls Well, I
[00:24:58] Brittyn: mean, what's [00:25:00] really amazing is that, you know, you're 15 to 20 years ahead of a lot of people that are getting these diagnoses.
Now they're trying to navigate these services now and they get to kind of look up and be like, , Rob did it. And this is what he's learned is what I can learn from him. And sometimes just seeing somebody that is. You know, higher up on like the journey that is just enough to be able to keep going and like make it one day at a time.
[00:25:28] Rob: They survived it. So can I kind of thing, right? Like it's It's almost proof of concept. Like, you, you know, someone else did it already. So, okay. I can do this, you know, and you just break it down in little steps and do it. I've lived like five minutes in chunks, right? Like five minutes to the next five minutes, the next five minutes, sometimes just to whatever you got to do to get through the moment, you know, and just be creative about it.
It's all you can do. Yeah.
[00:25:53] Brittyn: Well, following incredible people like you online is where a lot of people get their hope and can [00:26:00] actually get in contact with. When it feels really isolating locally, you know, share with us where people can find you because there's many ways to, to find, yeah,
[00:26:10] Rob: there's the easiest way right now is just the autism dad.
com all, all of my links and stuff are there. I have like a link tree and all my profiles that has everything. Everything is the Autism Dad, so you can go to Apple Podcast or whatever and just look up the Autism Dad and, and find all that stuff. So I, I try to respond to everybody that sends a message.
It's, it's not easy to do that because I'm just one person, but squeaky wheel, right? So like if it's important, just, you know, go a couple of times and I'll, I'll catch it. I just, it just gets buried a lot of times. So I try to be accessible so that people can vent or, you know, whatever they got to do.
[00:26:47] Brittyn: I mean, when you have an audience that size, it's hard to stay on top of it
[00:26:51] Rob: yeah, I try. I do try. It's just not. Not always easy.
[00:26:55] Brittyn: Well I love your Instagram, I love your podcast. I see you on Facebook. I see you [00:27:00] in all the places. So definitely a great follow and I share your stuff all the time to my people and they love you too.
Or I already see that you're connected with them and you know, the. online autism space too. I love it. I mean, everyone's connected and supportive and it's really, really cool.
[00:27:17] Rob: It's a great community. It is a great community. Well,
[00:27:19] Brittyn: thank you so much for being here and for sharing all of this really great advice with parents, no matter where they are in the journey.
I think anyone can really benefit to hear this kind of information. So, well, thank
[00:27:30] Rob: you for having me.
[00:27:31] Brittyn: I appreciate it. Of course, it's always fun to catch up. I mean, this is only the second time that we've actually gotten to chat face to face. That's kind of like we were saying before we recorded, I feel like I just know what's going on with you because I see you every day on social media.
[00:27:45] Rob: Yeah, same, same we will have to connect again. I have a lot of questions that people have been asking. We can, we can talk about it on mine if you're interested in coming back on. Yeah, it's, it's good just to, to share our knowledge and help other people. So I appreciate everything that you're [00:28:00] doing.
[00:28:00] Brittyn: Oh, well, thanks Rob. Thanks for being here. Thanks everyone. Appreciate it. See you guys.
Transcribed by Descript
About Brittyn Coleman, MS, RDN/LD
Brittyn Coleman, MS, RDN/LD, is a distinguished Registered Dietitian and Autism Nutrition Expert, known for her innovative, sensory-friendly feeding approach to nutrition for children on the autism spectrum. As the founder of the Nourishing Autism Collective, and as an autism sibling herself, Brittyn brings both professional expertise and personal understanding to her work. She empowers families with her expert guidance, helping children receive essential nutrients for optimal health and development. Her strategies are tailored to the unique dietary needs and sensory preferences of each child.
Brittyn's influence extends beyond her membership site through her active social media presence and her popular podcast, 'Nourishing Autism'. Her educational content on Instagram, YouTube, and other platforms has established her as a leading voice in autism nutrition, providing valuable resources, practical advice, and a supportive community for parents and professionals.
