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Understanding Comorbid Diagnoses in Autism (S7E26)
Episode 263rd July 2024 • The Autism Dad • Rob Gorski
00:00:00 00:31:12

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Introduction:

In this insightful episode, we welcome Dr. Suzanne Goh, a pediatric neurologist and behavior analyst, to discuss the complexities of comorbid diagnoses in children with autism. Dr. Goh shares her expertise on the role of pediatric neurology, the importance of a holistic approach, and how parents can better advocate for their children.

Guest: Dr. Suzanne Goh

Dr. Suzanne Goh is a renowned pediatric neurologist and behavior analyst based in San Diego, California. Specializing in autism, Dr. Goh leads a comprehensive practice that integrates medical, behavioral, and developmental care. As the founder of Cordica, a network of 24 centers providing autism care services nationwide, she is dedicated to improving the lives of neurodivergent children and their families. Dr. Goh is also an author, with her latest book, "Magnificent Minds," offering a holistic approach to autism care.

Key Points and Takeaways:

  • Dr. Suzanne Goh’s Background: Pediatric neurologist and behavior analyst specializing in autism.
  • Shortage in the Field: There is a significant shortage of professionals specializing in pediatric neurology and autism care.
  • Role of Pediatric Neurologists: Diagnosis, genetic testing, metabolic testing, and epilepsy management.
  • Neurobehavioral Framework: Combining neurology and behavior analysis for a customized approach to autism care.
  • Common Comorbid Diagnoses:
  • Medical Conditions: Genetic, metabolic disorders, epilepsy, sleep disorders, gastrointestinal issues, immune disorders, and autonomic nervous system dysfunction.
  • Impact of Comorbid Conditions: These can significantly affect a child’s health, quality of life, learning, and well-being.
  • Advocating for Your Child: The importance of looking deeper than just the autism diagnosis and finding the right medical team.

Relevant Links:

Quotes and Highlights:

  • "The source of behavior is the brain. So it's a natural connection. And how can we really understand behavior if we're not thinking about the brain?"
  • "About 90% of autistic individuals have at least one co-occurring condition and 50% have four or more."

About Rob Gorski and The Autism Dad podcast:

Rob Gorski is a single Dad to three amazing autistic boys and the Founder and CEO of The Autism Dad, LLC. Multiple award-winning blogger, podcaster, content creator, social media influencer, and respected public figure for the last 15 years.

Connect with Rob: theautismdad.com

If you found this episode helpful, please subscribe to our podcast, leave a review, and visit our website for more resources. Connect with us on social media to stay updated on future episodes.

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Transcripts

Dr. Suzanne Goh_mixdown

Rob Gorski: [:

Dr. Suzanne Goh: Sure. Thank you, Rob. I'm so happy to be here with you.

My name is Suzanne Goh. I am a pediatric neurologist and a behavior analyst, and I'm a practicing physician in San Diego, California. And my area of passion and interests, um, And experience is autism. So, uh, really my practice is focused on that. And, um, I've had the privilege of working with a team and we, we now provide autism, uh, care services around the country in 24 centers called Cordica.

that with parents. Um, but I [:

Pediatric neurologist. Pediatric neurologist. Okay. Do you, do you find that there's like a shortage of people doing what you do? Yes. If that makes sense. Yes.

Dr. Suzanne Goh: There is a, there's a real shortage and really there, there always has been things are getting better. There are, there are more professionals entering the field, both physicians and also therapists and mental health professionals, but really there still aren't enough.

Um, in fact, there's some research showing that there's an 18 fold greater. Uh, demand and need for services, then there are professionals to provide those services.

Rob Gorski: So what role would a pediatric neurologist play in the diagnosis of, you know, a child that is presenting with, you know, symptoms of autism?

zanne Goh: Yes. So pediatric [:

Most can if they, uh, if they specialize in behavioral neurology. Um, but often, you know, child psychiatrists or psychologists. also have an important role to play in diagnosis. The part that pediatric neurologists can really, you know, my own practice is quite broad because of my interest in autism. So most pediatric neurologists don't do the whole range of support and care for co occurring.

really have expertise is an [:

on an electroencephalogram that actually are important to know about and might inform treatment decisions.

Rob Gorski: That is two of my three kids, actually. Uh, I have one who, my oldest was diagnosed with epilepsy like much later in life. He's 24 now, but he was diagnosed about 15 years ago. So he was 10 or 11. Um, And then my youngest or my, my middle child, he's 18.

ng where there was just, um, [:

I

Dr. Suzanne Goh: don't think I

Rob Gorski: described that right.

Dr. Suzanne Goh: They, they likely saw something on an EEG that, that showed the parts of his brain may be prone to having seizures, but he wasn't having seizures yet. Or at that time or, or, um, so yeah, so we can, an EEG is a great test because it measures the brain's electrical activity and can show us signs of maybe Um, you know, what parts of the brain are firing in unusual ways, how that might be affecting the way a child thinks and learns and behaves, um, and then guide us to it towards steps that we could take to help.

Rob Gorski: Do you, so I've, I've never met someone in your profession and we've worked with pediatric neurology and developmental neurologists and pediatric psychiatrists, all that, all that stuff. Um, I've never met somebody who specializes in both. The neurological side and is also a BCBA. And that is really interesting to me.

s that really stuck out. Um, [:

You know, better, uh, impact the lives of, of kids that are, you know, dealing with something like autism.

Dr. Suzanne Goh: I really appreciate the question. It makes such a big difference. And I hope that more and more of our physicians will get, um, education and training, you know, in, in behavior and vice versa. Um, because you're right.

and in cortical clinics, an [:

And so it's, Taking everything that is really effective and positive about ABA and the behavioral approach and then taking it one level, what I consider sort of one level deeper, you know, then once we've identified behavior and we've analyzed the environment and taken data and we understand based on that information, why behaviors are happening, then we can say, okay, what do we know about a child's unique neurodevelopment?

What we know, what do we know about the way their brain processes information. Sensory motor, cognitive language, um, social, emotional, and then that allows us to tailor the different antecedents consequences, you know, the different aspects of the environment specifically to then shape that child's behavior and learning.

So I think it's such a powerful combination.

ather than trying to apply a [:

Dr. Suzanne Goh: That's exactly right.

Rob Gorski: So do you see more, do you see more success with kids when that kind of approach is taken?

I mean, it would make sense that you would. Yes. Is that sort of what translates to in real life? That's right. Very cool. Um, how did you, how did you get started doing this? Did you do. Like what, like what sparked your interest in working with kids?

Dr. Suzanne Goh: Yeah, well, there were, you know, when I look back, um, there were a few experiences I had actually as a child that I think planted the seeds for what I do today and for Cordica.

Um, one is that my father was a pediatrician and so I grew up in Toledo, Ohio, and I just remember at that time, you know, the practice of medicine was different, he would have patients come to our home on nights, on weekends. And so it just felt like. I just remember having such positive experiences seeing my dad take care of children.

I was a high school student, [:

And what was. One of the really incredible things at that camp was they paired a neurotypical camp counselor volunteer with a neurodivergent camp counselor volunteer, and my co counselor happened to be a young man with cerebral palsy. And for me, that friendship was so powerful, seeing his intellect, his humor, um, recognizing, um, what now I think of as really the beauty of neurodivergence.

And so that, that stayed with me. And so as I went through medical school, Um, and then later of course, chose a residency and, and pursued that. Um, yeah, it was just that those early experiences were really powerful for me.

y on in life, and it sort of [:

And even if it was like, Never thought about doing something like that necessarily until you have this experience and it, and it kind of guides you or it's lights a fire sort of, or even sort of fine tunes, the direction that you were, you know, we're looking to go in, that's very, very cool. Cause you guys have like a passion for what you do and it's not like, um, Yeah.

I mean, there's, there's, well, there's a whole shortage of people doing what you do. So, I mean, you went through all the extra schooling and everything else. And I really appreciate that because like, I'm, I'm actually in Ohio too. I'm in Northeast Ohio. Um, and there's like a three year wait list here for kids to be diagnosed.

ask to wait like three years [:

Um, do you guys, do you guys do anything online? We do.

Dr. Suzanne Goh: And so we, what we've built out is what we call a hybrid program, meaning that we do, we provide services. online through, you know, telehealth, so virtually, um, we provide, um, in center services in home, in the community and in school. And the reason for providing this kind of hybrid care model is that different children and families have different needs.

hat telehealth delivery of a [:

Even things like occupational therapy, speech language therapy, um, certainly parent education, you know, parent coaching part of ABA. Um, direct services for ABA are harder to do by telehealth, but if you have, um, a motivated family, so much can be accomplished through, um, uh, caregiver coaching. So, we have, um, a lot of, all of our services now are available through telehealth.

And it allows us to reach families, you know, in states and locations where Cordica doesn't have a center. But one of the things we're very excited about and we'll be launching next year is a whole, is um, a full set of comprehensive care services for autism that can be done virtually, including diagnosis and all the different therapy services.

ally, but, but I think there [:

So that's, that's really, really cool. I'm excited to see how that,

Dr. Suzanne Goh: Yeah. And you know, the, the wait times, the lack of access to care is it for, for neurodevelopment for autism and neurodevelopment more broadly it's, there are the longest wait times of any medical specialty. And for me, that's. You know, I just think that's, um, it, it deserves so much more attention and effort because it, I think of it as a form of institutionalized discrimination.

If that, you know, if the quality of care is poor and the access is poor and we know, and it's fragmented, you know, that is just, um, that's really something that has to change in our healthcare system.

th you. I hear from parents. [:

So I, I completely agree with you. I'm, I'm very much looking forward to seeing you guys launch that, uh, because I think that'll be a great resource for, for a lot of people. Um, One thing we wanted to touch on today was the comorbid diagnoses. And, you know, some of the ones that I'm familiar with that I hear a lot about or I dealt with, with my kids, uh, you know, we have epilepsy, a lot of sensory related stuff, and ADHD is a big one.

And I guess I was wondering if you could kind of talk a little bit about what some of the common comorbid diagnoses are and then how, you know, how, you know, You know, one can impact the other because sometimes like symptoms overlap and it's really hard to kind of tease out like what's anxiety versus what's ADHD or what's just autism and what's, you know, whatever.

[:

Dr. Suzanne Goh: Yes. Why it's so important to understand these comorbid or co occurring features or diagnoses is because they can actually affect a person's. Health, quality of life, learning wellbeing, even more than the, the features of autism itself.

So we know that these are extremely common. About 90, well, an estimated 90% of autistic individuals have at least one co-occurring condition and. 50 percent have four or more. So these are incredibly common. The way I like to think about them is in different categories. So the first category being medical.

toms and disorders. Close to [:

And then, um, also a category called autonomic nervous system dysfunction. Um, that's, are you familiar with the autonomic nervous system?

Rob Gorski: Yes. My, my oldest, when he was about. I don't know, he was about 11. I think, uh, he was getting his 72 hour EEG and on the way home from that evaluation, he crashed in the car and his heart rate, uh, went haywire.

re his brain would just stop [:

And he would be hospitalized for upwards of a week at times. And there was. It was all supportive care because there was no way for them, they didn't know how to stop it at the time. So that's, um, is that, is that something that you see like those just mysterious kids that present in these weird ways that just, you don't know what to do with.

Dr. Suzanne Goh: There's well, we now know that they are connected. There's still a lot of research that needs to be done to figure out exactly what those mechanisms are. And, and it's probably, you know, complex and interactions of lots of genetic variables and. Certain environmental variables and, and that waxing and waning kind of presentation.

d that these things are much [:

Rob Gorski: Yeah. So that, you just totally kind of blew my mind when you, when you said that, because you're the first person that I have talked to that has sort of connected those dots.

Uh, in some way, and that was really kind of validating. One of the things that I think parents struggle with is, is being taken seriously when, when it comes to some of these things, because, you know, I hear from a lot of parents and even my own experience with my kids when they were younger is, you know, you take these symptoms that you're seeing at home and you take them to your care provider and they tend to want to just sort of sometimes anyways, lump everything under the autism diagnosis and just say, well, they're autistic.

ow do you recommend parents. [:

Dr. Suzanne Goh: Well, it's, I would say what you just described is probably the biggest problem currently in, in the field of, you know, healthcare for autism is that there's a mistake that a lot of professionals make, which is to attribute some symptom or some You know, something that comes up, they'll say it's because of autism.

Now that doesn't make any sense because the diagnosis of autism is just a descriptive one. It's just a collection of observations of characteristics. A diagnosis of autism doesn't speak at all to root causes. Or underlying biology and so, um, one example that I often give is if a child has self injurious behavior, you would never ever want to say, oh, that's because of autism.

ate of chronic stress that's [:

And it can take time to find that team.

Rob Gorski: Or yeah, to find a good fit, I think too, because sometimes it's hard to find, um, it's hard to find a good fit. Yes. Uh, if you have, if you have a child that's diagnosed with autism, is there, I mean, is there a recommended, um, Like primary care practitioner, if that makes sense.

Like you have like your, if you're a pediatrician to handle like all the everyday stuff, right. The nutrition and whatever. Uh, but do you, do you recommend, you know, for kids who are neurodivergent that they have a developmental or a pediatric neurologist to kind of handle the overarching sort of like autism related type things,

: you know, it will look the [:

You know, support your child depends so much on kind of your local resources and the local expertise and interest and specialty of the different, you know, professionals in your area. So, for some, um, and I know, you know, I'm here in San Diego. There are a lot of pediatricians in the community who are fantastic and actually have quite a high level of knowledge about autism, are extremely open minded, um, understand a lot even about nutrition and supplementation and how different lifestyle factors and exercise and different things influence development.

So sometimes a general pediatrician can, you with that. Can cover all those bases in addition to doing things like, you know, uh, if your child gets sick or has a fever or, you know, well, child checks, those kinds of things. Um, but in, in other places that's harder to find. And so you may then, uh, want to look for specialists and, um, sometimes that specialist is a pediatric neurologist.

s it's a child psychiatrist, [:

So it really is about exploring, getting to know the resources, talking to other parents, and then trying it, trying it out and seeing if that person, uh, aligns with the way that, that you think about your child and the type of care that you want your child to have.

Rob Gorski: And I, I think it's, I think that's very well put.

And, and, you know, we've been very lucky. Well, I've been very lucky with my kids and our pediatricians have been very, they are very knowledgeable and they're, they're like huge team players. So, so we've had this like huge support team with Cleveland Clinic and Akron Children's and, you know, a dozen different doctors in various different specialties.

you know, I always just tell [:

If you're still not taken seriously, get a second opinion or find a different doctor. You know, I mean, not everybody's going to be the best fit for what you're doing and you are. Your child's best advocate, you know, and don't be afraid to speak up. You know, I think sometimes parents are a little bit intimidated and don't feel like they can do that.

Um, I wanted to also touch on your book, uh, uh, Magnificent Minds, because I think it just, it just came out like a week ago.

Dr. Suzanne Goh: Yes. Yeah. One week ago.

Rob Gorski: Awesome. Can you talk a little bit about. Magnificent minds.

Dr. Suzanne Goh: Sure. So a magnificent minds, uh, the, the full title of the book is magnificent minds, the new whole child approach.

ve always wanted a book that [:

And, um, I'd never, I was never able to find that book. And so I, that, that was a big part of what inspired me to write Magnificent Minds. Um, and, What what the book offers is, um, what I call the whole child path. So it really is intended as a road map, you know, something that will equip and empower caregivers.

their children. So it covers [:

And yeah, it's, it's my attempt to try to bring everything together.

Rob Gorski: And it, and there, it's like, Practical. So, so it's not like, um, outrageously complex or, you know, cause I think a lot of times parents get like, you know, homework to do with their kids or whatever, and, and it's just not, it's not realistic and, you know, being able to, to focus on that, that whole child and kind of attack things from multiple different angles is good for any kid, right?

se a lot of times people are [:

You gotta go on vacation and self care can literally be anything that is positive for you. That's not self destructive, that is sustainable and puts back into you. Right. And, and having that sort of, um, the approach that you take with this makes it Attainable and accessible to people. So I just thought that was really, I wanted to point that out.

Cause I thought that was really cool. Uh, I do have my copy. I couldn't find it though. I put it somewhere today thinking I'm going to sit it down. So I know where it is. And then I I'll find it as soon as we're done. Um, but very, very good. Very, very good. And we'll have all the links in the show notes.

Cause, uh, it's on Amazon, right? So I'll have all those links. What is, what is the best way for parents to connect with you?

send, I'll get messages and, [:

I also have a website, um, drsuzannego. com. Um, they can message me that way. And, uh, Instagram, uh,

Rob Gorski: Yeah, I'll have all those links, uh, in the show notes and in the blog post, uh, for this, I'll tag you guys in the promotional social media stuff. So people can connect with you. I, as a parent, I really appreciate how accessible, uh, you are and, and being open to hearing, uh, from parents because.

There are so many people out there who are so desperate and just, they feel like they're drowning and you, you don't know, maybe, maybe you do, but like, sometimes it's that one person who, you know, is accessible to you, who is willing to just listen or connect with you or point you in a direction that makes all the difference in the world and sort of restores that hope.

And you get that strength to kind of get back up and move forward a little bit more. And I just thank you for doing everything that you're doing. I really appreciate it.

's, um, sometimes people ask [:

And so I was really guided by the parents that I worked with and have learned. I mean, I've learned more from the parents and the children in my practice than I have from anyone. So, um, it's, it's wonderful to hear that it's, um, the book is resonating. And

Rob Gorski: yeah.

Dr. Suzanne Goh: Oh

Rob Gorski: yeah. Well, thank, thank you for everything.

And, uh, I'll have all that information so people can connect with you and check out your book and, uh, find some help if they, if they need help.

Dr. Suzanne Goh: Thank you so much.

Rob Gorski: So, uh, thank you again for your time. I really appreciate it. And, uh, we'll talk to you soon.

Dr. Suzanne Goh: Thank you.

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