Creating Our Path with Autism & PDA

I am happy that you are here today. We're talking about something that's always vulnerable and very raw for me. If you've been following along for a while, you know about my family and how we're dealing with autism and PDA.

I have already done an episode before which I hope helps bring a lot of peace and comfort and hopefully hope to families that find themselves in similar situations.

For Autism Awareness Month, I wanted to do a follow-up on creating a path when dealing with neuro divergencies.

Whether that is autism, PDA, or any other challenges that you have with your kids, I hope this episode helps you embrace the process of thinking outside of the box and following your intuition on a very deep level when you have nothing else to go by or no proof that things are going to work out. 

What you'll learn in this episode:  

• How trusting our intuition is necessary when facing uncertainty in parenting
• The hope, humor, and deeper appreciation for the world of neurodiversity
• Our story of battling PDA burnout and the unusual, gut-feeling path we took towards recovery
• The need for patience and understanding in the diverse ways brains interpret instructions and the world around us
• The historical mischaracterizations of autism and how evolving perceptions are shaping the treatment of autistic individuals

Featured on the Show: 

• Ep 39: Behind the Curtain of Autism & PDA
• PDA North America
• Research Into Left-Handedness And Its Effects

Click HERE to watch this video to learn The 3 Things to Avoid When Reading Self-Help Books

How to Connect with Lara:

Web: www.larajohnsoncoaching.com 

Instagram: www.instagram.com/j.lara.johnson/ 

Facebook: www.facebook.com/larajohnsoncoaching 

Work with Lara: www.larajohnsoncoaching.com/work-with-me/ 

Transcript

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Welcome to the Mom On Purpose podcast. I'm Lara Johnson, and I'm here to teach you how to get out of your funk, be in a better mood, play more with your kids, manage your home better, get your to do list done and live your life on purpose. With my proven method, this is possible for you, and I'll show you how.

You're not alone anymore. We're in this together.

Hello, welcome to the Mom On Purpose podcast. I am happy that you are here today. We're talking about something that's always vulnerable and very raw for me. If you've been following along for a while, you know that a year ago I did a special episode called Behind the Curtain of Autism and PDA and I will link to it in the show notes so you can go back and listen to that episode. 

To date, it is the highest listened episode ever on the podcast and I think it's because it shares a lot of insights into my home and family life and helps bring a lot of peace and comfort and hopefully hope to families that find themselves in similar situations. 

Whether that is autism, PDA, any other neuro divergencies or any other challenges that you have with your kids, it really requires us to think outside of the box and to follow our intuition on a very deep level when we have nothing else to go by or no proof that things are going to work out. 

So, I wanted to just do a follow-up, since it is well I guess technically when this airs it'll be May 1st, which is one day out of Autism Awareness Month, but I had so many amazing other episodes I wanted to share before this amazing episode, so that is why it still is considered an Autism Awareness episode for the month of April. 

But before I dive into that, I wanted to share a funny reel that I saw the other day. It was a grown man who looked like he was maybe, I don't know late twenties, early thirties. He's going up to his mom's house and it's a video of him in the ring on her ring camera and as he's approaching the front door the mom over the ring camera says where is it? And he goes what? She goes where is it? I asked you to pick it up. 

And he goes well, it's, it's in the truck and I'm not very happy that you asked me to get it. And she's like why were you not happy to get it? And so, this whole time you're wondering like what is it that he was supposed to get? Why is he so mad about it? And he's like well, she's like go get it from your truck. And he brings it over and it's a bag of litter. 

He's like well, you told me to pick up litter, and so I was going and picking up litter off the side of the road and he's like pulling out pieces of the garbage to show her. And she says I don't even remember his name. But she said why did you not? She's like I know your brain works differently than a lot of people, but why did you not question the fact that when I asked you to pick up litter, you start picking up trash off the side of the road? He's like well, I don't know, you're my mother. Like well, I wouldn't question that, like you're my mother, you told me to pick up litter. 

She said no, cat litter. He's like ah, ah, do you want clumping or non-clumping? And then, as he's like, walking off, you know he realizes the mistake, that litter has two meanings in this situation, and he took it very literally as in like pick up litter off of the side of the road, because she hadn't specified cat litter. 

So, I share this example because this is my everyday life, living with autistic individuals in my home. There are more than one. In my immediate family I believe there are three, and two have official diagnoses, and because of this I am always switching back and forth language from like the way my brain processes to the way of an autistic brain, and so I wanted to share just, you know, there's always this conversation about labels, and are labels a good thing? Are they a bad thing? Is somebody hiding behind a label? Are they using it as an excuse? 

I hear a lot of parents saying that they don't want their kids to be labeled, um, so they don't maybe seek a diagnosis. So, I wanted to talk a little bit about my understanding and having talked with many adults, um, adult autists and their experience, their lived experience, and then kind of dive into how that presents now in our life and what we do with those labels and how we navigate those. 

So, I want you to think just for a second about an Android and an Apple phone. So, my sister in our family group chat, my sister, my older sister, my older brother, are Android users and they cause the stinking group to be green bubbles. I know, you know what I'm talking about because either you're the green bubble in the group or you know someone that's the green bubble in the group. 

So anytime you go to like, ha-ha something, or like something or heart it, it just doesn't work the same way, and so we are always teasing them that like, ah, like your green bubble's, messing up the group chat, or you know, we can't. We can't navigate some, we can't have some of these cool features that we do for all iPhone users, but their Androids work for them, and they love them, and they've used them for years and it's fabulous. So, think about that just for a second. Now I want you to take this just a little bit further Now. 

Even within Android, there are many different updates, many different versions. Same thing with an Apple phone there are all different kinds that have been released. These are all different cases. My kids love to take whatever device they have and kind of customize it to themselves. My daughter got her iPad that she had gotten for Christmas. 

She likes to have her very own font and keyboard that she downloaded. It's like very galactic and when I look at it, I'm like so confused about what I'm even looking at and she'll text me and it's in some different font and she loves it. It's like so customized to her and it's super cute, because I'm not that way at all. 

So then being able to see, even within each of those and Android and Apple there are so many different versions and things that you can customize. So then, even watching, for example, my son play certain video games, there are other things he wants to do in those games. So, he starts creating what they call mods, different modifications that can happen within a certain game, so you can start building something in the way that you want it to look and be. 

So the reason why I use this example and I think in the episode I used in the past it was like an Xbox and a Nintendo Switch it doesn't matter what kind of device you're using as the example, but this is one of the best ways I am able to explain a neurodivergent brain to another person, because we all have a brain and there are different ways that that brain works. 

There is a different way that an Android works than an Apple works, but ultimately, they have the same thing in that they are a smartphone. You have the ability to call from it. So, when we're looking at how we understand different brains between and in this example, I'm just going to be using autism versus a neurotypical brain there are different shortcuts that you use depending on how you are communicating, based on which brain it is Okay. 

So, when you're looking at like an autistic brain, going back to the funny reel that I said, they are very literal, and they will take things at a very you know face value. So this presents a lot of really fun opportunities in my house to see how literal can I be? Like what loophole am I missing? 

So, there was once I asked my husband, we've been married for 15 years I had asked him to pick up some Chipotle for me and he asked me what I wanted on it. I said, well, you know, I just I told him a few things and I was like and then, just like all the toppings, you know, like all the ones that are included, like I don't, I don't go to Chipotle a whole lot, I don't know what toppings are included. So, he comes home with the biggest burrito I have ever seen. 

And I was like, well, why is this burrito so big? He's like, well, you told me to get all the toppings. I was like, well, yeah, like just the ones that are included. I don't know what ones are included. I'm like, well, what did you put on there? And he literally listed all of the toppings, all three kinds of salsa. And I just paused, and I was like, have I ever ordered all three kinds of salsa? He's like no, but you told me you wanted all the toppings. 

It tasted good. I mean, I'll be honest, it tasted good. I still ate it, but it was. It just was so comical because I was being so specific. I thought there's still other workarounds depending on the brain and how like you're working together. So all of that, to say that it can be so joyous working with a different kind of processing system that you have, and it can be very frustrating at times. 

And that's communication, and that's learning how to work with the processing system that exists in someone else's body. You know, being able to understand how they think through things is almost like speaking a different language, or having to create a mod in a game, or knowing if you are an Android or an Apple. Okay, those are just examples, so one of the common misconceptions that I have heard. 

We've been in this world for a time. Even before we had an official diagnosis for our son. I suspected that he was autistic from the time he was two years old. I suspected that he was autistic from the time he was two years old and because he was able to what they call mask, which means mimic other people's behavior, it looked as though he was understanding, when in reality he was just mimicking behavior and therefore masking what was really happening internally. 

So then, by the time he got home, and the mask came off which we all experience, like when we come home, we just finally relax. There was a very different child that I was experiencing than the outside world was. So, it took us a long time. Things got very bad before we could finally get someone to listen to us and see the same things that we were seeing to the point where we did hospitalize him for a time and had to do outpatient programs with a children's psych ward. 

That was a very, very difficult time. Well, fast forward another year, we found ourselves in the exact same position and we did have the diagnosis of autism, but I still felt like we were missing something because he was escalating so quickly that we were in a spot where we could have hospitalized him again and I didn't feel right about it. My husband didn't feel right about it and went out. 

That time was when we found out about PDA, which is a subtype of autism called pathological demand avoidance Although many in the community prefer the phrase pervasive drive for autonomy which is essentially a nervous system disability, where their body it has, like everybody's body, has a threshold. 

Before you move into fight or flight, their body has a very low threshold and every demand that's coming at them will send their body into fight or flight, um, very easily. So, when a lot of demands are being placed on them over and over and over and there's no in their minds hierarchy of demand, like the demand to go to the bathroom would be very similar in their body to the demand of writing a paper. 

So, you can imagine all of the demands of like needing to brush your teeth, needing to eat, needing to put your clothes on, needing to put clothes in a dirty clothes basket, like for a lot of us. That's very simple, but that very easily can send their body into fight or flight. 

So then, when you are in that state of fight or flight, then you start entering what they call PDA burnout, which is essentially where your entire body starts to shut down, which is where we were at with our son, and thankfully we had a therapist mention PDA to us and that sent us on a whole new journey of understanding of what we were faced with and the path that we needed to take. 

Most supportive communities I have ever seen and lifelong friendships that I've been able to create with families that look and function a lot like ours, and that has been so life-changing to be able to meet very successful adults that it gave me hope for my family honestly, um, when we had lost all hope for a time. So, I want to go back, though you know that's a little bit about. You know our path, since we have been on this path. 

One of the phrases that I hear a lot is that everyone is a little autistic. They call it a spectrum for a reason, and you know I am not autistic myself. I never want to speak about someone else's lived experience as an autistic person. 

So I really challenge you to, if you know someone, to ask for their experience not just the parents of the child, but the child themselves or another adult, because every single one has their own individual story and someday I hope my son and other members of my family are willing to share their experience of what they've gone through. 

But I think the biggest thing here is when I talk with autistic adults, they feel that this phrase can really diminish the experience that they've had in a world that was not made for an autistic brain. So, one of the best ways to think about this when everyone says everyone's a little autistic is, instead of saying everyone's a little autistic, you can say everyone has a brain, just like an Android and an Apple phone. 

You wouldn't say everyone has an Android or everyone has an Apple. Maybe everyone has a phone and within that there are different processing systems and different kinds of phones. It's the same thing when we talk about everyone has a brain and there are different processing systems that exist in those brains. Yes, there are definitely similarities, but that's the similarity coming because you have a brain, not necessarily because you are an Apple or an Android. So, I hope that makes sense a little bit. 

Another misconception I hear a lot of is everyone is getting diagnosed now. This didn't exist before. There's so many more people that are getting diagnosed and this didn't used to exist. I hear this a lot and what I want to be very clear on is that autism has always existed, but it used to be called feeble-minded. They were typically sent to insane asylums. 

If, when you look at the research or I think it also was called like childhood schizophrenia, because it can sometimes look when someone is triggered, an autistic individual is triggered and they go into fight or flight, it can look like there's two different personalities and that's where for a long time I couldn't figure out why I was seeing a very different person than the rest of the world was seeing with my son. 

But now I understand what a mask is and being able to understand when their body goes into fight or flight. They don't have the same kind of control. So, a lot of times those individuals were sent into some kind of institution and those institutions were around in the eighties, nineties, I think the last institution. I don't know in what country was closed in 2001. That was not that long ago, so it's always been here. But if you were not an individual that could function in a neurotypical world, then the only option for you typically was institution, which is really heartbreaking if you think about it. 

The other thing that I'll say is that chances are you know someone that is autistic, but in the past, you just thought of them as a little quirky or a little weird. And that's not to say everyone that's quirky or weird is autistic. That's just typically a way that people have described someone as they just like quote unquote, rub them the wrong way. 

They're not making eye contact with me, they're talking about one thing over and over and it's hard to like get you know a foot in the conversation or whatever, because they're talking about something that's really intriguing, you know their special interest or whatever. So oftentimes, as we've increased awareness around this and around autism, and especially with social media and there's more studies, now we're able to start to move away from a very traditional definition of autism to this is a processing system of someone's brain. 

The other thing that I will specify, like within this misconception, is that we are finally moving away from looking at behavior alone. This is an uphill battle. I can't even begin to tell you how many times doctors, pediatricians, psychologists, psychiatrists will only look at behavior to determine whether or not someone is autistic. This is very problematic because most research on autism was based on white males and autism can show up depending on the culture, the ethnicity, the gender. 

It can show up in so many different ways, but if you are only looking at behavior, you miss a lot of individuals. So now that that is starting to transform, a lot of people are starting to realize that they are autistic. A colleague in PDA North America. She's almost 66 years old and just received her autism diagnosis. 

So, you're going to start seeing this so much more. But it's not because something is in the water. It's because we are increasing awareness and the language around it, and that is a good thing because that allows us to have a deeper understanding of each other's processing systems so that we can create a world that is inclusive to all processing systems, to all different kinds of brains. 

I also wanted to share this interesting study. This is from a Professor McManus who is from the University College of London. He has done a whole bunch of study about the history and geography of left-handedness, and he said in the past left-handedness was punished. It was seen as evil for many years, so they were always trying to punish children into using their right hand. 

Additionally, left-handed people were viewed as less capable and a lot more clumsy and not as smart because they were working in a right-handed world, viewed as less capable and a lot more clumsy and not as smart because they were working in a right-handed world. So, this goes back to even the industrial revolution, where all of the machines were made for right-handed people. 

So, if you were naturally left-handed, you were clumsier on the industrial revolution line, the machine line of you know, putting whatever together. So, there was always this thought that left-handed people were evil, they weren't as smart, they were a lot clumsier, they were less capable. 

But the more they started to study left-handedness and the more they started to create products and a world that could accommodate left-handedness, left-handedness diagnosis increased a lot. So that's just something to kind of keep in mind. 

Anytime you hear someone say oh well, everybody's getting a diagnosis now, that's because we're finally creating safety and the language and understanding about other different types of brains and creating a safe place where people can actually be heard and seen and be accommodated for the way that their brain works. So, with all of that, I wanted to just share very briefly about the path that we've taken, and this is not to say this is everyone's path. This is not to say this is the right path. 

This is only to say that in this journey, in any parenting situation, we are not given an instruction manual, but we do have a built-in navigation system and that is our intuition and being guided by God through the entire process and being able to tap into our soul and open that communication channel with God or through the spirit. I really do believe that we can have that built-in navigation system that sometimes will lead us down paths that look very unconventional, and it can be very scary. 

So, like I mentioned, my son had gone into PDA burnout where his entire nervous system had shut down. He had stopped eating, he had stopped sleeping, showering had already stopped a long time ago. He got to the point where he looked like a vegetable, a very stinky vegetable, to be honest and it was scary, it was really scary. 

Nothing we could do to; we couldn't motivate, and we couldn't do anything. So, at this point we pulled him out of school. That's what we felt very strongly to do. We were still working with medical professionals and people that specialized in PDA and understood the PDA burnout process and we felt very strongly we had to try this out because we know the alternative and that was institutionalizing him and that didn't feel right. 

So, at this point, this is where we pulled him out of school and his only jobs literally only jobs were to sleep and eat, and that went on for months and then, over time, it's been almost 18 months since he has stepped foot in any school. The trauma that his body experienced there because of the demands wasn't the teachers, it wasn't the administration, we had an amazing team we were working with. 

Do I wish we had done some things different? Yes, definitely, they were trying their hardest, based on the information and what they saw, and I don't fault them for that. But now, looking back, the trauma my son's body experienced has kept him from ever going near a school again, and we're trying to solve for that now, but after a few months it was. 

It was a very interesting process watching, because he went from watching YouTube like not even YouTube like shorts the YouTube shorts that are like 30 seconds long. He'd watch them like 14, 15 hours a day. Okay, and this is this is coming from a mom who is like the strictest person when it comes to technology, or was, and I had to just trust. Okay, this is the process, and this is what I actually feel, even though it goes against everything I traditionally believe. 

So, he started watching YouTube shorts and eventually he got to where he was watching YouTube. And then it got to where he was watching shows, and during this time, we're bringing him food in wherever place that he's at and he's not eating it. He was only eating protein bars. 

Thankfully, he at least ate that and over time, he started eating while he was watching a show. And then, over time, he started to want to play a video game again and he started playing video games and we would still feed him in front of his video games and over time, he started sleeping at night. And then he started talking to friends online. And then he started FaceTiming them, but leaving the camera off so he could talk with them on the phone while they were doing a game. 

And bit by bit and again, it's like the slowest process. If you would have told me this would have been our journey, I would have told you absolutely hell, no, this never would have done this in the past. Absolutely hell, no, I would never have done this in the past. But it has been like a full exercise of trust and faith that this is what we need to do, and he is a very different child than he was 18 months ago. 

He comes up and he enjoys family time now and he wants to be around other people. He's spending time with his friends. They come over. He showers not as regularly as any mom wants with their teenage son, but it is happening. Before it was like we could maybe get him in once a month. 

Now, you know, it's a couple times a week, which is a really big deal, from where we were even to the point where he'll help babysit our 18-month-old and he'll sit and play with him. And he, he came up the other day and he's like you know what, I've been on the computer too long. I think it's good for me to get some sunshine and to come up and hang out with you guys and I'm like, yeah, actually I think that's a great idea. And it's all of these things that he's making these decisions on his own, because his body is healing from the inside out. 

I asked him the other day about some of the hard things that we experienced, and he doesn't remember, you know, the property damage. He doesn't remember the hours of screaming and breaking things and it was almost like in his mind he that didn't exist because he had blacked out. And if you've ever had a time where you have been in fight or flight and there has been any kind of trauma, your brain really does start to black it out. 

And I asked him a question and he's like you know, I think that was just back in my angry days. I said do you remember your angry days? He's like no, I don't know what I was so angry about. And I was like, no, I don't know what I was so angry about. And I was like, yeah, I don't know either, but that's a lot of anger. So, it was such a beautiful moment for us to be able to come together. 

Do we still have a long way to go? 

Yes, there is so much more to learn about the way his brain works and with autism and PDA and now better understanding you know our other children and their processing system, and all of this to say is that I am so, so happy and proud of the progress that they've made. But I had to let go of the reins in a lot of ways. 

I had to trust one in my intuition and to go totally into the dark, against all traditional parenting strategies and standards. That was very uncomfortable for me, but I knew what I felt inside, and I couldn't deny it. And I had to walk that path and it was very challenging to do and many times I questioned but could only go off of the little inkling that I had in my built-in navigation system. 

On top of that, I had to really trust that he had the courage to grow, he had the courage to heal, he had the ability to heal and again it looked very different than other ways that people have healed in the past that I've learned about. 

But I had to just trust this for him, and he has become a very delightful, wonderful, funny, the kid that used to be there, that just disappeared for years and it's so fun being able to see him come back out. But I had to trust that process and I had to trust him that he would have that courage to grow and that we would have the courage to continue to make detours if needed and if our navigation system sent us to other paths. 

So, this again is not to say this is your path. This is not to say this is the right path. This was the path that we created based on how we felt, and I hope that being able to hear this episode has given you courage to tap into whatever you are feeling right now for your children. 

Sometimes that intuition will take you to radical places, but the more you trust that the more you lean into that, the more God will continue to reveal the next steps, the more healing and joy and happiness and growth will start to take place. 

And that is possible with any processing system of the brain the brain autism, PDA, ADHD, dyslexia, sensory processing, literally the whole gamut of all of it, whatever you are faced with, even if it is not a neurodivergency, trust your intuition, create your own path. 

God will not leave you alone on there. Have a wonderful week. 

Thank you for listening. Please share, review and subscribe to this podcast so that together, we can live life on purpose.