Ep 6: Going Down the Rabbit Hole of Diagnoses with Neurodiverse Children

Both of us have spiraled down the rabbit hole of diagnosis with our children. As a parent, when you first hear about autism, you don’t know what you don’t know. You find yourself asking, “Are these behaviors normal?” many, many times. What even is “normal”, anyway?

The reality is that doctors often disagree on their diagnoses, which can lead to even more confusion for families. They’re supposed to be the experts, but we found that we had to persistently and vocally advocate for our kids in order to get to the root of what was happening.

In today’s episode, we talk about the term “diagnosis”, the data around autism diagnoses, and our rabbit hole experiences with multiple diagnoses of autism, Tourette’s, OCD, and more with our neurodiverse children. If you’re currently experiencing this with your own children, we see you. We’ve been there.

In this episode, you’ll learn...

• [10:49] The data around autism diagnosis, and why some folks with autism actually prefer not to use the term diagnosis

• [21:25] Kristen’s rabbit hole diagnosis experience with her children

• [30:16] Our shared experience with Tourette’s syndrome diagnoses for our kids

• [41:22] Gwen’s rabbit hole diagnosis experience with her children

• [55:03] The Last Word from our kids on what they think it means to be diagnosed with something

If you just can't get enough of us, don’t forget to join our newsletter and check out our other projects.

Links mentioned in this episode…

Article on Diagnosis

Book recommendations for this episode from Marvelous Me books:

• Just Ask!: Be Different, Be Brave, Be You by Sonia Sotomayor

• I Am Not a Label by Cerrie Burnell

• Far From the Tree by Andrew Solomon

Transcript for "Ep 6: Going Down the Rabbit Hole of Diagnoses with Neurodiverse Children:"

Gwen:

If you have an appreciation for honest and often irreverent conversations about parenting humans with neurodiversity, you have found your home. I'm Gwen.

Kristen:

I'm Kristen. Together, we have 35 years experience parenting some fiercely amazing humans, which gives us an endless supply of stories of inspiring failures and heartbreaking wins.

Gwen:

Welcome to You Don't Want a Hug, Right? We've been having these conversations for years, cracking ourselves up. We've always wanted to share the hilarity and the hard with other parents. So, here we are.

Kristen:

Grab a cozy blanket and a beverage and go hide in a closet nearest you. Good morning, Gwen.

Gwen:

Hey, hey, KK.

Kristen:

Hey. Hey.

Gwen:

We've had so much fun during the launch of this podcast, hadn't we?

Kristen:

It has been a ride. I mean, we've heard from a lot of people from different parts of our life that's been really interesting. I feel like it's touched a lot of people. Yeah, it's been a blast.

Gwen:

It has been. It's been the most fun for me to have people come out of the woodwork and say, "As an adult, I just got diagnosed as autism and I can't wait to hear these perspectives." My great aunt has been my sweetest one. I don't even know if I've told you this, but she called me one night. I mean, if I ever felt bad about myself, now I know to call her. Honey, you are a blessing to this world. You and that Kristen are a blessing to this world. I mean, she started relating to our social isolation piece, not having a child with different abilities.

So, I've had a lot of positive feedback on people. I can so resonate with that isolation piece because of my experience with X, Y, and Z. So, I've had so much pride in that people's journeys being completely different subject related are just enjoying being able to relate to our experiences. So, that universal appeal, I think, is what I am the most excited about, being able to translate that with our listeners.

Kristen:

Yes, I agree. It has been an opportunity for us to think about ironically, because we feel isolated a lot of the time, how human our experience is and how many ways people can really relate to that.

Gwen:

For sure.

Kristen:

I also think it's a great example of leading through vulnerability. I felt really anxious about putting ourselves out there into the world this way, but I think it's the thing that resonates with people the most is the vulnerable pieces of it. So, it's been really cool.

Gwen:

Yeah, I think we've had to work through that at home here. My husband and I, he's not big on vulnerability or putting himself out there, and I wear my emotions on my face, hands, neck sleeves. I'm an open book. So, that's been a balance that we will continue to work through, but the feedback is thank you for your vulnerability. Thank you for just being honest about your feelings. For me, that's not even a thing. So, I appreciate, Kristen, that you are being so vulnerable. I am just being myself.

Kristen:

You're just being you.

Gwen:

Yeah. I have to be careful not to be inappropriately vulnerable. In fact, my therapist Clinton often says, "Gwen, vulnerability for you is silence."

Kristen:

Oh, my God, that's perfect. Clinton, I'm using that.

Gwen:

He is always right, and I always want to punch him in the face. Anyway, he listens. So, I love him dearly, but yes, vulnerability is silence for me. Okay.

Kristen:

Thank you for your service, Clinton.

Gwen:

Thank you. Can we start off with a Graham-ism and Rylan-ism please?

Kristen:

Yeah, yeah, yeah.

Gwen:

You go first.

Kristen:

Okay. My Graham-ism is an oldie but goodie. I think it's often hard for us to understand what's going on in Graham's brain and how he perceives the world and thinks about himself. Talking about his emotions or how he feels about something often alludes him, let's say. One day he was just going on a riff. He's great at allegory and using analogies. He was talking about how his brain works, and this is what he said about himself.

He said, "Sometimes I can't think. There's a lag. The computer server is glitching or lagging. I feel like my brain is a giant computer and my eyes are the monitor. My body parts are like the mouse, and my heart is the system bit. It makes the computer run well." I was just typing as fast as I could on my phone as he was telling me more. Say more about that. He really has such a different way of thinking about himself, but I thought that was so insightful and interesting.

Gwen:

So if his heart is the bit, if his heart's not in a great place, he's just going to be lagging like crazy.

Kristen:

Right.

Gwen:

Well, isn't that true for all of us though?

Kristen:

Yeah. Aren't we all just a big meat computer?

Gwen:

But we can cover up the lag, whereas our kids can't. That lag is just right there.

Kristen:

So true.

Gwen:

That's really powerful. I think Rylan and Graham have a way of describing themselves in very similar ways.

Kristen:

Just incredibly insightful and thoughtful, and we so rarely get a window in there. When we do, it feels like a huge gift to know like, "Oh, my gosh. That's great information for me to know what's going on for you."

Gwen:

So I was going to share a different one, but I think I'll piggyback on Graham's. So, my Rylan-ism is when we were writing his book, it was done during a homeschool semester because we do that as autism moms. We just pull our kids right out of school sometimes. I did for a semester. It ended up being a transitional point that guided the rest of his school career. So, we'll do an episode on that, I think. But he was describing Tourette's and how it feels to have Tourette's.

Since we're talking about a rabbit hole diagnosis today, this is appropriate. He goes, "Well, for me, Tourette's a good thing that my command center," which he describes as his brain, "has two joys, because when my Tourette's hits, that second joy comes up and hits the joy button so that my joy can be stronger than my frustration."

Kristen:

Wow.

Gwen:

Then he drew a picture of it, and I'll post the picture into the show notes because it looks like... I think he was referring to the movie Inside Out. He really resonated with that movie because he is like, "Well, yeah, that's exactly what it looks like in my brain. It's a command center. I just hit that joy button. I have two joys up there."

Kristen:

Oh, I know. I need two joys.

Gwen:

We all need two joys. He's always had two joys. So, he's very rarely in a bad mood for more than a minute, which sometimes I wish he'd stay in a bad mood for longer than a minute. My mood certainly lasts longer than that. So, sometimes I'm like, "Can we just be grumpy at each other for 10 minutes, please?" But he can't do that, and it's because he has two joys up there. So, whenever I see him move on from things, I'm like, "No, shit. That second joy just popped right in there."

Kristen:

I know. I think Graham gets that from my husband Greg too, because neither of them can stay mad for more than 2.5 seconds. I'm like, "I need a day. I need a whole day to be mad at you." That's just not really allowed in our family.

Gwen:

No, my daughter and I can, but Tim and Rylan, I mean, you heard Rylan at the end of one of our episodes says,

"Well, I just don't have a lot to be mad about in the world." Okay. I do. I have so many things. Would you like me to list them?

Kristen:

Graham also describes when he gets upset or frustrated in his brain, it looks like SpongeBob. It looks like an office scene.

Gwen:

You're going to have to describe that because I can't SpongeBob.

Kristen:

Well, I really have a problem with SpongeBob. It's just so loud and so crazy and annoying, which actually, I think, what Graham's trying to say is all of these cartoon characters are running around in an office scene. It's bizarre and very frenetic. He said that's what the inside of his brain looks like, and that he just has to shut down because that whole scene is playing out.

Gwen:

You know what, Graham? I would shut that right down too.

Kristen:

Me, too.

Gwen:

That's stressful to me to even think about SpongeBob in my brain.

Kristen:

That requires medication for me.

Gwen:

All right. So, those were really beautiful Rylan-isms and Graham-isms.

Kristen:

Yeah, I feel good about those.

Gwen:

Let's talk about the rabbit hole of diagnosis. That is our topic for today, listeners. We call it a rabbit hole because I have no idea why. Do rabbits dig holes that go in a lot of directions?

Kristen:

I don't know. Is there a network of a whole city under there? Maybe.

Gwen:

I don't know. Shouldn't that be like an ant hill of diagnosis?

Kristen:

A termite hill?

Gwen:

Maybe.

Kristen:

Yeah, we just spiral down there.

Gwen:

Why don't you start with a little data around diagnosis, and I think it might be helpful for us to separate the word diagnosis and what it means from a different word that we can propose that our community is tending to lean towards.

Kristen:

Yeah. So, a caveat to this conversation is that many autistic people do not want to be referred to as having autism spectrum disorder. They don't believe that that disorder piece is meaningful and actually often think it's harmful to be thought of as disordered because their brains work differently. So, that's part of that neurodiversity sociocultural movement. Diagnosis really is a process of determining the nature and circumstances of a diseased condition. That's the actual definition. A lot of people whose brains work differently prefer identify. So, to perceive or state the identity of someone or something really has a different connotation to it, I think that's going to resonate with some people who are autistic or have certain diagnoses or conditions.

For others, it won't, because their symptoms are so significant and impactful that it does feel like a condition or a diagnosis. So, different people are going to feel different ways about it, but it's important for you to know that in the disability community, identify would be a preferred way to talk about what we're going to talk about today. So, we're going to use all kinds of words, just whatever feels right.

Gwen:

Yeah, I think as a mom, I would've appreciated just having that word thrown out there. We are identifying Rylan as having Tourette's syndrome. I think that would've felt softer to me and felt more as a descriptor rather than a label.

Kristen:

I have a really good friend who has a child with a rare genetic condition. When her daughter was born, the doctor called her when she was home, the baby was still in the hospital and said, "You need to come back. I have some really bad news."

Gwen:

Oh, okay.

Kristen:

Exactly. I was that she had cri-du-chat, which is a significant condition or trajectory of life, and my friend would've preferred to hear something like, "I have some unexpected news."

Gwen:

Sure. We have identified something about your daughter.

Kristen:

Right. Give the family the opportunity to determine the meaning of that information and how they're going to integrate it into their family lives. So, we know that people rarely get one diagnosis. Often it's a journey and something that we as parents often refer to as the alphabet soup of diagnoses. Through the years, we have both experienced this ourselves, and I know many families that have experienced this. You really struggle to understand which thing is true and what's meaningful and what's the right fit. A lot of our kids don't fit neatly into a diagnostic box.

So, it's confusing. It's a confusing experience. According to the National Institute of Health, in a study from 2019, 91% of children and adolescents diagnosed with autism have at least one co-occurring diagnosis and that's often a mental health diagnosis. But constellations of other things are commonly seen with autism, and that includes issues with GI, issues with sleep, seizure disorders, underlying genetic conditions, anxiety, depression, OCD, ADHD. It gets really complicated.

Gwen:

Ticks are really popular coexisting condition.

Kristen:

Absolutely. Sometimes naturally occurring, sometimes as a side effect of medication. A lot of times, doctors or psychologists don't agree on a diagnosis and that can really mess with us and how we move forward. I have had experiences with clinical psychologists that didn't agree on an autism diagnosis, and it made it very hard for me to figure out how to think about my own child and how to help them think about themselves.

Gwen:

When they're that young, we are looking to them for answers. When we're new to this, they are the sage.

Kristen:

We don't have the self-confidence.

Gwen:

Because we're not armed with what we need to know or how we should approach these conversations. So, we just sit there like children just gaping at them. Tell me about my child. Looking back, it was so harmful. It's not that these doctors are doing anything wrong per se, but we don't have the information that we need to set the stage, to set that launch point for the conversation. So, that's why I feel so strongly about what you and I are doing, because we can help give you that armor to go into these conversations with some confidence in this is a launch point conversation. This is not a diagnostic conversation is really how I see it now.

Kristen:

Say more about that.

Gwen:

We are not diagnosing what is to come. We are giving you tools and information, identifying information about why you see what you see in your child, and this is a launch point for moving forward.

Kristen:

I love that.

Gwen:

This is a starting point, but to remove curiosity about your child at the point of diagnosing, it's catastrophic.

Kristen:

It does really narrow your perspective on what you're seeing and what the potential is. It can be a way of... I agree with you, this is not the fault of the clinical community. This is just a paradigm that's been set up. It's a way for us to think about what we're seeing. I think one of the hardest things to accept is that there's no blood tests for a lot of these diagnoses. This is behaviorally observed. Then you have to wonder how subjective the coding is for assessments.

I mean, I think having been a part of research in my own work life, I understand that there are a lot of really sound assessment tools, but they're not the be-all-end-all. A good clinician will never make a diagnosis based on an assessment alone. It's a lot of interviews. It's a lot of observation. It's a collection of experiences that lead you to a diagnosis. It should never be just from one assessment.

Gwen:

Which is why there are often waiting lists to be assessed that are years long, years. What's so hard about that is that they're doing their due diligence and making these diagnoses, but that means that kids are losing years of interventions and years of their parents having a better understanding of, "Okay, what are we seeing here that we can speak into by just waiting?"

Kristen:

A lot of our families of color and families who are of different cultures, the tests and assessments are not made with their cultural norms in mind. So, when you are doing a test like the ADOS for autism and it's pulling for certain behaviors, but it's using feeding a baby doll, that might not be culturally appropriate for certain families. So, a child might not know what to do with certain things or blowing out birthday candles, things that just are very normed to our mainstream culture.

Gwen:

That's a really good example. Not to mention that underserved communities are not on the wait lists because they're not given the tools they need to even know what to do or to have the insurance that will help cover these tests or to have people advocating for their child. So, a lot of these kiddos are just going to go misunderstood for a lot longer than their privileged peers.

Kristen:

Correct. So, with a little bit of that background, we have so many diagnoses-

Gwen:

Do we?

Kristen:

... that we could discuss?

Gwen:

I forget about them.

Kristen:

I think we would bore the pants off of our audience if we went through all of our experiences. So, I'm going to maybe try and have a collective response to our diagnostic experiences because it was compounded by having three kids the same age and-

Gwen:

Oh, struggling.

Kristen:

Oh, struggling. Nobody's talking. Nobody's pointing. Nobody's playing functionally with toys. What are we doing here, folks? What is happening?

Gwen:

Kristen, tell us about the first child to be diagnosed for the first time. Tell us about it.

Kristen:

Oh, it was Hayden and receiving a diagnosis of autism, I think we were terrified and really sad. Really, really sad.

Gwen:

That was your first diagnosis, autism?

Kristen:

Well, our first diagnosis was Graham having hypotonia from a neurologist, which we thought, "You must have a tumor or something. What the hell is that?" It's really just low muscle tone.

Gwen:

Oh, I mean, does that even need to be diagnosed? Isn't that just a part of every child with autism?

Kristen:

I think it's part of being a Guggenheim, because I think I have the same thing. He didn't walk until he was two. He didn't bear weight on his legs until he was like 17 months. So, we could tell that there was something going on. OT, Hayden wouldn't pick up any food. He had to feed him. He didn't want to touch anything. So, we had OT.

Gwen:

Wait, is that weird? Should they be touching food? Didn't touch food till he was like 10.

Kristen:

I know. So far, it's been a lifelong relationship with food that's really bizarre for all of our kids. That was the first sign that things were amiss. Were they supposed to eat food that's only one color for the entirety of their childhood, which was beige or orange?

Gwen:

Well, is it bad that they wouldn't eat solid food till they were three, or that they would vomit it up if they didn't? Is it weird that we had to feed them in the bathtub so that we could just wash down the vomit? Is that not normal?

Kristen:

Wait, is it bad that we had to feed them baby food fruit because nobody could handle the texture of a fruit or vegetable?

Gwen:

Of course, they couldn't.

Kristen:

So any who.

Gwen:

You can see how though I was like, "Well, this is normal."

Kristen:

We don't know any different. These are our first kids.

Gwen:

Then Reagan came along eating food, and we were like, "What is she doing?"

Kristen:

She's like eating salmon and snap peas.

Gwen:

She's so advanced, pediatrician. Look at this gifted child. He's like, "No, no, no, no."

Kristen:

It's just what kids do. Oh, okay.

Gwen:

Okay. Go ahead. Autism is a big diagnosis to get as a first. It's big.

Kristen:

It is big. It feels big. It feels heavy. It feels impossible to wrap your mind around. Then I get another kid diagnosed with autism and then another kid diagnosed with autism. That felt to me like a shit pile of shame. I felt a lot of shame, not for whom my kids were. I didn't feel shame about my kids because they were really freaking cute. It was shame that I've somehow done this to them, that my fertility journey or living near a transmitter or I don't know, Greg being an older parent, having an infection while I was pregnant. There's like eight ways to Sunday that we could have caused our kids autism. I went down that path for a while, really blaming myself and feeling that shame and feeling like people were going to judge me.

Gwen:

That's horrible.

Kristen:

It was horrible. It was a hard piece to move beyond. I think because we were focused on the deficits when they're young and we're so focused on, I think about you saying, fix the kid, fix the kid. We've got to fix the kid. That's the focus.

Gwen:

Except for you, there's so many kids, fix so many kids, fix so many kids. We've got to fix so many kids.

Kristen:

Fix all the kids. Fix all the kids.

Gwen:

That's a lot of weight.

Kristen:

It is a lot of weight. I do some training with providers and parents, and one of the things I like to show them is a spreadsheet of all of the... It's like a table of all of the diagnoses we've gotten over the years for each kid. Then I want them to think about, "As a parent, how am I supposed to integrate that information into who my kids are and tell them the story of who they are with those words?" Those words mean limitation is what those words mean. It's what they meant to me. It was painful.

Gwen:

The words meaning limitation remain that way until we are able to shift our narrative. That's really hard to do.

Kristen:

It's really hard to do when they're young. When they were in late elementary and middle school, I started to be able to think about, "What do these labels really mean?" What was really interesting was what they were going to mean to my kids because they started either rejecting or embracing different labels, which was a fascinating process. Jameson went through a phase where he really rejected the label of autism. It scared him. It was scary for him, and now he fully embraces it. Graham embraced it pretty early on, and Hayden rejected it outright, which is a really interesting thing.

We'll talk a little bit more about our shared experience, you and I, with Tourette's, because that was the turning point for Hayden that this cluster of other conditions, which is Tourette's, OCD and ADHD, which came in when he was about nine, really made a lot more sense to him and honestly made a lot more sense to me that he may have been misdiagnosed with autism or the early intervention created an optimal outcome for him and that he wasn't no longer experiencing those symptoms of autism, but they really shifted into these other things that were incredibly impactful.

Gwen:

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I think though, when I think back on our years of discussions about what is the word for what our kids struggle with or what is the word that describes our kids, we come back to that so often. So, I can remember sitting on your back porch and you saying, "I think what we're looking at with Hayden is Tourettic OCD." I was like, "Oh, my gosh. That's Rylan too, Tourettic OCD," which no, I mean he absolutely has autism, but I was so clinging to that label of Tourettic OCD as a way to understand my kid. Now I know that that's when the warning signs should start going up. If we are looking to a label to help us understand our kid, we're losing sight.

Kristen:

Yeah, that's a really interesting way to think about it.

Gwen:

Because we're then looking at, "Well, what is Tourettic OCD versus who is he and how does Tourettic OCD impact who he is?" But I don't think I was able to shift that until maybe the last two years and how many years I lost of really appreciating who this kid is. I mean, I always found him hilarious and delightful, but I was so focused on the fixing and the reducing all these behaviors. I just missed out on so much.

Kristen:

Let's talk about Tourette's in particular because we have this shared experience. To me, it was one of the most painful experiences as a parent because it was so visible. I remember Greg and I sitting at the pool one day and we were watching the kids playing in the water. We were watching Hayden nod his head back and forth so violently over and over and over again. He kept having to stop what he was doing to do this really, really vigorous head nodding. Greg and I looked at each other and just felt like, "Oh, shit."

Gwen:

What is that?

Kristen:

What is that? What is going on? What are we supposed to do? He would cry at night from the pain. He would have really bad headaches and neck aches. He had a lick lipping tick.

Gwen:

Oh, yeah, sister

Kristen:

That created just like this red raw cracked bleeding ring around his lips. He couldn't stop doing it.

Gwen:

It was a permanent part of Rylan's face for a couple of years.

Kristen:

For years.

Gwen:

People would say, "Oh, you got to get some ChapStick." Do I? Is that what I need?

Kristen:

Thank you.

Gwen:

Thank you so much. I should have paid you $10,000, instead of the therapist, habit reversal therapist, okay?

Kristen:

Habit reversal training, meds, OCD. Ugh.

Gwen:

Thank God there's ChapStick.

Kristen:

Thank God, if only we knew.

Gwen:

If only he could feel the ChapStick on his face and be okay with it. Yeah. Our first even mention of Tourette's was... I've told this story before. ... very good friends of ours in Colorado very nonchalantly just said, "Hey, do you think that Rylan might have Tourette's?" Tim and I acted as if they just stabbed us in the eyes and then ripped them out because so many people's opinion of Tourette's is that stereotypical. They're yelling the F word and screaming, and they're out of control. That is not Tourette's.

Kristen:

It is Tourette's, but it's a very small percentage of people with Tourette's that have that.

Gwen:

Right. It's very rare, but it's not talked about a lot. Tourette's is not talked about a lot. So, we were highly offended, but by the next morning, I was researching Tourette's because I knew in my gut, there it is something. Well, what is Tourette's? So I think within a month, we had a neurology appointment at Children's in Denver. Within 10 minutes of sitting in her office, she's like, "Well, of course, he has Tourette's." We were like, "Oh, okay. Oh, okay. Well, I mean, are you sure?" She's like, "Well, yeah, he has three different coexisting ticks present during our visit and the past five minutes. That's Tourette's." We were like, "Oh, okay."

Kristen:

I didn't think it was Tourette's. We also went to a neurologist at Children's, and I was like, "We're just going to rule this out. It's probably some other tick disorder," or lots of kids tick when they're in elementary school and then it just goes away. It won't be Tourette's. She was like, "It's Tourette's." What? I said, "But you need to have vocal ticks as well as motor ticks." She said, "Yeah, he's sniffing and he's clearing his throat. Those are vocal ticks."

Gwen:

What were the first ticks that you saw in him as a little?

Kristen:

Well, now that I look back?

Gwen:

Yeah.

Kristen:

Because this is what happens, right? We don't notice it when all the other things are going on, but he had an eye blinking tick and that looks like just really long squishing your eyes together blinks. That was the first one. Then there was a little bit of a neck roll, and that turned into really violent head nodding. That's when things got really, really crazy. At one point, we were thinking we were going to do Botox in his neck, which is so scary to think about. If you don't do the right dosage, is his head going to fall off? I don't know. So, those were the main ones. Then licking his lips, he would do some things that pull himself up to the table so that his stomach had to be pressed really hard against the table, and he had some internal moving of his muscles and his stomach.

So, some of those ticks were internal. We couldn't see them. Then that morphed into... When we talk about Tourettic OCD, there were a lot of rules around how he could think about things. So, there he had a compulsion to think about things in a very specific order, and he couldn't think about one species of animal until he had finished thinking about the other species. Sometimes he would cry when he was little. He would cry because he wanted to think about chickens, but he still wasn't done with sharks and rays and he couldn't move on. It was heartbreaking.

Gwen:

I think the tick order is identical.

Kristen:

Really?

Gwen:

Yeah. Rylan started with excessive blinking to the point where strangers would be like, "Oh, mom, he has something in his eye." No, he doesn't. No, he doesn't. Mind your own business. He just blinks a lot and it's cute. Okay. Super cute.

Kristen:

Yeah. Who asked you?

Gwen:

Do you see how blue his eyes are? They can blink as much as they want to because they're beautiful. So, he did tons of blinking and then he would do shoulder shrugging, up and down, up and down. But his vocal tick was... I mean, we called him the squeaker. He did that.

Kristen:

It was like a hiccup squeak.

Gwen:

A hiccup squeak. He did that. I mean, he would go through phases where he would do that every 10 seconds all day long. We started to not even hear it, but do you think his classmates heard that?

Kristen:

Oh, they did.

Gwen:

Teachers don't understand Tourette's, so we had so much education around, "Well, he wasn't doing that yesterday. So, we think that this is voluntary." Okay, I'm going to send you a quick video on Tourette's. I'm going to need you to watch that. That's ultimately why I pulled him out of school that semester because that teacher kept sending him into the hallway until he could control his ticks. I had already educated this teacher. So, that's the year where I lost my shit and said, "He's out. I'll be back next year. Find me a better teacher for him." She was a lovely woman, but she didn't understand Tourette's.

She would call him out in front of class for making his sounds as if he could help it. He would say that is called Tourette's. He would advocate for himself so beautifully. So, we did really work hard. Then I would make him go at the beginning of every year and talk to his classmates about Tourette's because it was unavoidable. They would hear him the second class started making these squeaking sounds that we thought were adorable, but the kids didn't. I don't know what's wrong with the kids. You don't think having a little mouse in your room all day long is adorable?

Kristen:

Every 10 seconds?

Gwen:

So the Tourette's ended up being a gift for him because it was a way for him to describe his experience. Then you know who wasn't bothered by his Tourette's? His classmates ever. His teachers were, but his classmates didn't even notice once they understood.

Kristen:

I think it was harder for Hayden to advocate for himself, generally speaking. He's such an introvert and is really shy, and the Tourette's was pretty torturous. He also made a lot of animal noises because animals were his special interest. He would do that at the lunch table, or one time the teacher, he was in sixth grade. My kids were at a Montessori school, so we had the same teacher, fourth through sixth grade. The teacher let me know, "I think Hayden is having maybe some a seizure or something. He's flapping his arms." I said, "Well, show me. What do you mean?" So he shows me the movement and I said, "Oh."

Gwen:

Oh, no, he's being a bird.

Kristen:

He's being a bird. He's being a swan actually.

Gwen:

And doing a beautiful job.

Kristen:

And looking amazing might I say.

Gwen:

In fact, he attracted a group of swans. Did you notice?

Kristen:

In their classroom, they had these two beautiful birds that Hayden, I think, was maybe imitating while class was going on. So, that was what was happening. So, a lot of the special interests interact with the Tourette's. Also, Tourette's, the ticks shift over time. So, he might have a tick for six weeks or six months, and then he'll move on to another tick. Or if he's with somebody else with Tourette's-

Gwen:

He takes on theirs.

Kristen:

He'll take on their ticks and they'll take on his. One of his closest friends as a kid also had some ticks, and they would tick away with each other.

Gwen:

And pick up each other's. Rylan would get a cold. I always knew, "Oh, shit, here comes a throat clearing tick." If he gets a cold, he takes on that. Then it's probably a month of that, so it doesn't take much.

Kristen:

Hayden also has a sniffing tick that's probably the only one left that's really noticeable. He just tells people he has allergies and he does the blinking tick. So, all that to say, friends, that Tourette's can tend to have a peak and then really start to mellow out in the later adolescences into early adulthood. So, at 19, Hayden has very few visible ticks, the sniffing and the eye blinking, and sometimes lip licking. That's a little tongue twister.

Gwen:

Lip licking. Lip licking. I didn't find that hard at all. I think we should do a whole episode just on Tourette's and talk to the boys about it too. So, that will be to come. But when it comes to the rabbit hole of diagnoses, for us, it started with sensory processing disorder. That was only because his teachers were like, "He is not able to sit in his seat or stand in line. God forbid, we think that you should take this sensory processing disorder evaluation," which we did. It was like, I don't know, 120% absolutely, he has sensory processing disorder. We didn't even know what that was. So, that's what started it for us. They also had no idea what to do with him once we did find out that it was sensory processing disorder.

So, we left the school, another episode, but that immediately led to being in this tiny hot attic at this OT clinic, and the lady saying, "Well, he can't do a wheelbarrow." I mean, we tried to pick up his legs to do a human wheelbarrow, and he just laid his face on the ground. What is it that you're expecting me to do from this position? We were like, "Rylan, put your arms up." Well, who can do that? He couldn't even put his arms up to get into the wheelbarrow stance. Well, okay, deficit one. Tim and I were like, "Crap, I didn't know he was that weak. What else could he not do?" Oh, jumping jacks. Yeah. He couldn't actually get his feet off the ground for the jumping jacks. So, it just looked like his arms flailing, which we thought was hilarious and cute, but that was a deficit. Oh, he could not hang from a bar.

Kristen:

No. Well, why would you? Why would you?

Gwen:

Still can't hang from a bar. His muscle took so bad. He would just fall to the ground and act exhausted. So, after that, we were like, "Well, we had no idea what we were up against clearly, no idea."

Kristen:

How is this kid going to get through life not being able to hang up a bar?

Gwen:

Or do a wheelbarrow?

Kristen:

Or jumping jacks?

Gwen:

How many wheelbarrows have done with him around the house? We're going to nail this wheelbarrow. If we say wheelbarrow, he's like, "Oh, you know what?" If you made me do a wheelbarrow in my house right now, I would kick you in the face. No way. But this was the start of our journey. Those were our benchmarks. How stupid.

Kristen:

Absurd.

Gwen:

But of course, he couldn't sit in his desk. He was five, and he also did not have anything to play with at his feet. Well, he needs something to play with his feet if you want him to sit in a desk. He couldn't stand in line because kids were touching him and that felt like shocks to his body. Anyway, all of this, we were like, "Okay, we're going to teach this kid to do a wheelbarrow, to hang from a bar, and he's going to be standing in line. Damn it."

Kristen:

Then he is going to be fine.

Gwen:

And he will be fine. I mean, no, he can't go into an assembly. Can he just stand in the hall? Rylan, come on. Can't you just sit in the fricking assembly? I mean, these things, Kristen, but that led so quickly to then our pediatrician saying, "Ugh, sensory processing disorder. That's a bunch of hogwash. OTs, that's not even a thing. Don't even waste your time." We were like, "What? That is so conflicting with what the lady in the attic told us."

Kristen:

Because sensory processing disorder was controversial and not in the DSM-5, by the way.

Gwen:

But you know what he had? Oh, so much sensory issues. I mean-

Kristen:

Oh, my gosh.

Gwen:

... we brushed that boy's skin every three hours for three months. But you know what? It helped. He was able to stand in line at the back as the caboose where no one could touch him. But you know what? That's what he needed from the beginning. We didn't need to brush him to figure that out, but we did. We brushed him. But that led to leaving the pediatrician, because clearly, we couldn't be working with opposing minds. That new pediatrician was like, "This is not autism." He laughed when I said, "Is this autism, by the way?"

Laughed at me and said, "No, but he absolutely has ADHD, the non-hyper kind." Okay, fine. Then well, yeah. He has Tourette's, of course, but also the neurologist said in that five minutes, "Oh, I'm pretty sure he has epilepsy. I see him having a lot of absence seizures." So we went down a six-month rabbit hole, ant hill-

Kristen:

Termite hill.

Gwen:

... over epilepsy. Did you even know we did that?

Kristen:

No, we did it too.

Gwen:

You did?

Kristen:

Two of our kids looked like they were having seizures when they were young, and we had to do the whole thing.

Gwen:

Yeah, because of course they have abnormal MRIs because their brains are very unique.

Kristen:

But inconclusive.

Gwen:

Right. Ours was definitely abnormal brain activity. We were like, "Yeah, no shit."

Kristen:

I didn't need to stick 80 things on his head for us to know that.

Gwen:

And make him stay awake all night to do this test. Then we were admitted to the hospital for a formal sleep study after being told for three months that he had epilepsy. After two days in the hospital, the neurologist came in or whoever it was and said, "He doesn't have epilepsy. This is just abnormal brain activity. You can go home." I just sat there like, "No, no, you all told us that he had epilepsy. This was the answer to everything." So the fact that I grieved over my son not having a horribly difficult condition makes me ill now.

Kristen:

It's a weird place to be when you feel like you have to argue with people about your child having a significant issue.

Gwen:

I mean, of course, we're glad he doesn't have epilepsy. The fact that that's the place we were in, oh, thank God it's epilepsy. No. So, we grieved that he had it and then we grieved that he didn't because we had shifted all of our thinking to we're going to tackle this epilepsy and that's why he does all these things. Of course, it is. It made so much sense. But no, he's not having absence seizures. He is that distracted all the time. Then the autism didn't come until he was what, 10, 11? Is that when I was a fellow? That's when he got his autism diagnosis.

Kristen:

I remember when PANDAS came up and you felt like, "This is the answer. He doesn't have autism."

Gwen:

It's PANDAS.

Kristen:

He doesn't have ticks. It's PANDAS. It was painful to watch you go through that knowing that you were going down a rabbit hole. It was like, "Oh, friend, I see it. I'm watching you and I am you. I know what you're doing." It was hard because you spent a lot of money. You did a ton of research. Ultimately, I don't think it got you anywhere better.

Gwen:

No, no. I mean, for our audience, PANDAS is this very controversial diagnosis that I don't know it if it will ever not be controversial, because it's just not scientifically proven and they can't like medicate for it. It involves a reaction to a strep infection, and the strep infection gets caught in the body. So, it causes all this inflammation and it's interesting. But we spent months, we drove him to Chicago to go to a specialist there, and we had all of this blood work done. It was so controversial that our neurologist at Children's said, "Off the record, you need to look at PANDAS." So we did and then she ghosted us.

Well, then it turns out she got in big trouble for mentioning PANDAS to a client or to a patient. They called us with her manager in the room, and she took back what she said. It was the most awkward... I said, "But you told us that the blood work showed..." She goes, "I didn't." It was so uncomfortable. So, even these diagnoses are within the medical community so confusing. So, what are we supposed to do with that as parents? I found specialists to talk to. I still believe that he probably has a lot of inflammation in his brain.

A lot of the PANDAS research is interesting and makes sense based on a strep infection that he had as a baby. That's really when we started seeing all this stuff, but it still just is what it is. If I spent my whole life trying to focus on that, I'm just missing out on him. So, we ended up right where we started with he's Rylan, his brain works really differently. Read the book and you can understand him better. I'm out.

Kristen:

The end. We had an experience where people didn't think Graham had autism. Most people thought he did. Isn't that hilarious? Most people did. Some clinicians did not. I had one clinician say, "I think he has a language disorder, executive functioning disorder and sensory issues." I was like-

Gwen:

Those are all autism.

Kristen:

"... That's autism. What is the difference?" The problem is that that is such a nuanced, intellectual, hairsplitting difference that I can't go out into the world and tell people those are the things.

Gwen:

No.

Kristen:

Nobody will know what that is. We as families, I think, go through periods of time where we overdisclose, we underdisclose. I finally realized I need to tell the lifeguard at the pool that this kid has autism and he's not going to hear you if you give him a lot of verbal direction.

Gwen:

Sing it. Yeah.

Kristen:

Sing it. Hold up a sign that says, "No splashing."

Gwen:

Yeah, laminate it because it's a pool.

Kristen:

That's right.

Gwen:

Because we have to go out into the world and tell people. With our kids, we have to tell people about them or it doesn't go well. If we want to do anything outside in the world, we need to have language to describe our kids. So, that's the part of labels and diagnosing that I appreciate, because when we were able to say, "Hi, Rylan's doing your little soccer camp today. He has autism," bam, I'm out. They looked at me and said, "Oh, okay." Because you know what that did? It described any quirky behavior that they saw, they were like, "Well, he has autism."

Explained, done. Before that, I was like, "Okay, he's going to react to this way. He might do this if he says this, if he makes noises." It was an hour long sit down conversation that I was able to eliminate when I could just use the word autism. So, for that purpose, I love being able to use that diagnosis as a descriptor, but I will never allow it to be a definer.

Kristen:

Yeah. That's such a great differentiation. I think that's enough for us today, friend. I think we should let our kids talk a little bit.

Gwen:

Yeah. I don't even think we've really scratched the surface on what it's like to get all these diagnoses. I don't think we've even scratched the surface, because like we said, clearly, it's a rabbit hole.

Kristen:

I'd love to hear from some of our listeners what their experiences have been on the website, if you want to comment. We're also going to post... Gwen wrote a beautiful piece on the finality of a diagnosis that you will be able to see as well.

Gwen:

All right. We're going to hand it over to our kids. See you guys next time.

Reagan:

We know our moms are amazing, but they don't know everything. We think that you deserve to hear from the real expert, their kids. Woo woo. We believe in nothing about us without us. So, here it is, the last word.

Gwen:

Hey, Ry.

Rylan:

Hi.

Gwen:

So we would love to hear from the kids what you think it means to be diagnosed with something. What do you think that means?

Rylan:

Basically, a doctor just telling you what your condition or mobility or sickness is. Diagnosed can also be used for sickness.

Gwen:

True.

Rylan:

So that's what's... Yeah.

Gwen:

Do you think that that's a good word to use for getting diagnosed with autism or getting diagnosed with Tourette's? Do you think that's a good word to use, or would you rather use a different word?

Rylan:

I don't care what they call it. No.

Gwen:

It doesn't bother you?

Rylan:

No.

Gwen:

Okay. Can you talk about what it feels like to have a diagnosis of Tourette's?

Rylan:

I'm not sure what you mean by that question.

Gwen:

What do you think about the fact that you have a diagnosis about Tourette's?

Rylan:

I just feel normal.

Gwen:

Okay. Do you ever even think about it?

Rylan:

No.

Gwen:

You don't?

Rylan:

No.

Gwen:

What about if you're having a really bad tick day? Do you think about it then?

Rylan:

Yes. I just don't want people to laugh at me.

Gwen:

Yeah. But do you have any negative thoughts about having that as a diagnosis, or do you just not have much thoughts about it?

Rylan:

Not much thoughts.

Gwen:

Okay. What about having a diagnosis of autism? How do you feel about that?

Rylan:

Don't think about it that much.

Gwen:

You don't?

Rylan:

No.

Gwen:

That's amazing. Why do you think you don't think about it very much?

Rylan:

Just normal for my life.

Gwen:

Yeah. It is normal for your life. Do you think that a lot of kids with autism think about their autism, or do you think most kids are like you and don't think about it much?

Rylan:

I don't know what other people think, but I know what I think.

Gwen:

That's a very fair answer. Yeah. You called me out on that one, didn't you?

Rylan:

Because I don't live in other people's minds.

Gwen:

That's true.

Rylan:

I don't know what they think about. Can't read minds. None of us can.

Gwen:

Thanks, buddy. That's a fantastic answer. Yeah. All right. This has been a really great mumbly conversation.

Rylan:

Oh, I'm sorry.

Gwen:

Yeah. I just want to really thank you for the teenage boy.

Rylan:

No.

Kristen:

Jameson, today, we talked about the rabbit hole of diagnoses and how it can mess with our brains in terms of how we think of ourselves and each other. I'm wondering if you have a memory of your autism diagnosis and what that meant to you.

Jameson:

Well, I mean, I guess the big one is that I didn't know. Well, I guess I didn't know, but I technically was diagnosed with autism when I was four, but I don't remember any of that because a lot of my childhood was just compressing that and just like, "Oh, yeah, no, I'm quirky" or something like that. I ended up getting diagnosed my freshman year of high school. I remember it being, excuse my poor choice of words, but traumatic, because most of my life, I'd grown up around a lot of ableism and a lot of harmful ideas of what autism is and the way that "special ed" kids are treated where it's just thrown in the corner, don't want to be dealt with or anything.

So, I remember specifically that in that moment, it did make a lot of sense for certain things, having to stop myself from stimming in public. Honestly, that was more exhausting than it is now, because I was basically masking with it too, denying that I had autism. So, I was like, "Oh, well, what's wrong with me?" The way that it changed me, I think, is that I think something structured, a diagnosis like that keeps me grounded, if that makes any sense.

Kristen:

It does give you a structure for how to think about-

Jameson:

Yes.

Kristen:

... your differences.

Jameson:

Yeah. Whereas before I was diagnosed with autism, whenever I would have a meltdown, whenever I'd be like, "I don't understand these social situations," all that stuff, it just made no sense. It went out in one ear, went out the other, never really processed it. It just felt like, "Oh, if I confront these, then that means I'm some medical mystery," if that makes any sense.

Kristen:

But then having the diagnosis made you able to understand why those things were hard.

Jameson:

Yes, it definitely sucked. It sucked a lot, but it was able to help me start unmasking. Now, I'm still working through quite a lot, but I have good friends that are understanding about it, but not having to mask it anymore is honestly easier than having no diagnosis.

Kristen:

Oh, hey, Reagan.

Reagan:

Hey.

Gwen:

How's it going, girl?

Reagan:

Good.

Gwen:

Kristen and I recorded an episode today about getting diagnosis for our kids, and we would love to hear about the kids' perspective on what does it feel like as a kid to go through the process of getting a diagnosis. Do you have anything that you can say about that?

Reagan:

I don't know.

Gwen:

Yeah. Do you ever think about your own diagnosis of dyslexia?

Reagan:

Not really.

Gwen:

Why not?

Reagan:

Because it doesn't come to my mind.

Gwen:

No?

Reagan:

No.

Gwen:

That's great. What are times that it might come to your mind?

Reagan:

When I have to read in front of the whole class.

Gwen:

Oh, yeah. It would totally come to my mind, but other than that, it just doesn't really faze you.

Reagan:

Not really.

Gwen:

Awesome.

Reagan:

Back to the Dudley part.

Gwen:

Anything else about Dudley you want to share?

Reagan:

He's a fluffy poof ball.

Gwen:

He is a fluffy poof ball. All right. Well, Reagan, this has been a fantastic addition to the last word.

Reagan:

Reagan is the last word.

Gwen:

Okay. Thanks for joining us for this episode of You Don't Want to Hug, Right? We sure love it if you'd subscribe to our show in your favorite podcast app. Missing an episode would be catastrophic.

Reagan:

If you just can't get enough of us, join our newsletter and dig into all of our other projects and ways you can connect with us at youdontwantahug.com.

Gwen:

Food for thought, if you need to create a panic room out of your closet in order to find that parenting kindness, we offer our fullest support. See you next time.