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Beyond the Behavior Plan: Dr. Suzanne Goh on Holistic Autism Care · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hi, everyone. Welcome back to another episode of the Inchtones Podcast. Today I have with us Dr. Suzanne Goh, who is the founder of CorticaCare, which is a model of biomedical treatment and cognitive and behavioral strategies for children on the spectrum. And as you know, Mac and Mellie were the children of mine that began my journey as an autism parent. And even as little as seven, eight years ago, the progression of education and early intervention for. For children diagnosed with autism has rapidly changed and grown. And as a advocate in this space for all children, becoming the best versions of who they are, the establishment of Cortica, and being able to go in and see and talk with your facilitators and practitioners and therapists, it really takes a holistic child approach, and I would love to hear your thoughts on what and how and why. This is the way to move forward in terms of the growth of children diagnosed with autism.
• 0:59
  Speaker B: I'm so happy to be with you today. Thank you for the opportunity to talk with you and to share some of my experience and knowledge with families. I am a really, really strong believer in a holistic approach to care for neurodevelopmental differences. And for me, autism is such a unique trajectory of brain development that we understand a lot about now. We're really fortunate to have had decades and thousands and thousands of research studies, and what all of it points to, in my view, is the need for a holistic or a whole child approach. For me, that's without question. And so the inspiration behind Cortica is to be able to provide this model of care. What I think of as a home, a medical home, a place where neurodivergent children and their families can come to get the best, the gold standard across all the different areas of care that we know are so important for child development. So includes, of course, medical care, because the underlying biology, the physiology underlying autism is very complex and intricate. We know it involves the nervous system, the gastrointestinal system, metabolism, immune function, and each of those, in my view, is equally important. So we want to understand as much as we can and provide all of the necessary supports. And then there's the whole aspect of brain development. Sensory development, motor, cognitive, language, social, emotional. Each of those is attention. And then, of course, there's the other major component, which is thinking about the child's environment, the communities they're in, school setting, the home. And I know it can be. It can feel a little overwhelming to think about all of these different aspects of care for your child, but I believe it doesn't have to be Overwhelming. You can approach it in a really streamlined way where we can move quickly, get done things that we know need to get done, and at the same time, not overwhelm the child, not overwhelm the family. And so that's the goal, is to make all of this possible.
• 3:11
  Speaker A: When I learned about this model and was able to reflect back upon my time, which I do believe my children had a really wonderful early intervention care and clinical. I do find that the ability to house and create the teams from one central location is key. And not to say that every child is going to have the same exact team from Cortica, but to know that foundationally when you walk in or choose to make a call to get an evaluation for your child, that those practitioners are already working together. And, you know, I always say, like, I'm in cahoots with all these different people, right. And to pull those together. I became a CEO immediately and didn't have any of the skill sets for it. And I think that when it comes to, like you saying, medical jargon being thrown from all these different buckets of research, from behavioral to physical to mental health and circuitry, it then puts the stress load on parents who I, you know, I'm preaching to the choir here. The genetics would indicate that they came from me and their father who gave genetic material that likely caused this. And so there, that's the reflection back to us as parents also can start that cyclical cycle of stress. How do you. How have you found success in this setup for the families going forward? Because I think that as I witnessed and being able to tour your center, the feeling of calm of like the developmental pediatrician's there, they get to watch and observe my child for occupational therapy, which informs them of their next evaluation. Talk to me about what that gives to parents.
• 4:46
  Speaker B: Well, you know, when you first bring up the question of genetics, one of the analogies that I really love, that comes from Dr. Mark Hyman.
• 4:54
  Speaker A: Oh, I love. Yeah, yeah.
• 4:56
  Speaker B: He says the genes are like the keys on the keyboard on a piano, and epigenetics is how you play those keys. And epigenetics is essentially the effect that our environments and the way we live our lives, the way that that affects how genes are then expressed and then all the downstream effects on our metabolism and biochemistry. So because I do hear from. From parents quite a bit that the genetic part that, that you just described weighs on them heavily. And then when we get one of the first things that we know is important to do is to do genetic testing, because that can tell us A lot about a child's biology, which can then help us to support them optimally. But getting genetic testing can be very anxiety ridden for parents. I understand why, but I want to point out that, and I tell my families this, that all the gifts your child has also came, you know, in large part from the genetics and the love. So the environment that you created. And so you should take pride in all of that and that should, should take precedence in your mind. So always come back to that.
• 5:59
  Speaker A: The. Absolutely.
• 6:01
  Speaker B: Skill, the love, the joy that your child has in their life is, Is really what also comes from you.
• 6:08
  Speaker A: Absolutely. So I think, I think that that is encouraging. And I think one of the best takeaways, if not the biggest takeaway from your. From your book is to focus on the strengths. Because in refra like that, we as parents, I know that we are, you know, as a geriatric millennial parent, you know, growing up in the, you know, going to school in the 90s, I was chatting with someone that said, what did we hear all the time about dynamic expression or dynamic strengths? Which was think outside the box. Right. That I didn't realize until someone recently told me that seems to be a phrase that people, humans now in our early 40s, like we. That was the way of saying, allow your brain to go where it's going and to not hold back from what it's desiring to share. And I think that based on what you were sharing in your book, is that we need. Those are actually a strength. It's not actually a far stretch. It's just how that brain works. So it almost lands on a completely different subject matter, which is not thoughts or skills that are wildly different and crazy. It's actually thoughts and skills that are innate to them that actually aren't crazy and aren't shocking. So to utilize those things that even as parents new to the autism educational world, they might think, isn't that strange that they do that? Well, from your orientation, yes, but from ours, no.
• 7:30
  Speaker B: Exactly, exactly. And that's why it's all about how. How you see, how you view it is so is really, really important. And that's that transition to being able to view what you might consider features of autism, view them for their potential and how they serve a child and the directions that we can extend them.
• 7:52
  Speaker A: Right.
• 7:52
  Speaker B: That, for me, is really, really exciting. You know, it is my job I love the most.
• 7:56
  Speaker A: Yeah, it is. You know, I find that there are so many positives in the scientific research and growth around understanding children and adults and individuals with neurodiversity and at the same time, there's also this complex reality that we're constantly seeking to pinpoint the exact nature of the whys and hows of behaviors of the ones who extinguish that. We're failing to let the things that are just beautifully innate come to be and not bucket them into like, that's an autistic trait. This is not because I, you know, within my own family of origin, seeing siblings of mine who might not have been diagnosed but have, as they've grown up and gotten older, I think that was never siloed into an autistic trait. It was because it was a behavior that didn't need to be extinguished, that it ended up being a positive.
• 8:44
  Speaker B: Yes.
• 8:45
  Speaker A: Talk to me about how there is this balance of pushing and constant growth and development of these children and allowing it to sit on its own plane and not that of a typical child.
• 8:58
  Speaker B: Well, for me, a really important starting point is to recognize that the things that might at first seem to be what our field sometimes labels as problem behaviors. I don't like to use that term because I think any behavior, any behavior is something that a person says or does. So we're looking at a child, and some things that they may say or do that on first glance or first review seem to be problems. We want to actually step back and say, how is this behavior potentially serving the child? Where does it originate? Does it come from, for example, differences in their perception and their sensory processing of their environment? The majority of times it does come from that. And given then if we were to try to put ourselves in their shoes, which increasingly now we can do, because we have such a deeper understanding of sensory processing differences. What a child is seeing, hearing, smelling, tasting, feeling in their own body, their sensation of movement, balance, all of that is highly unique. And if you can begin to piece that together for a child, then you can see how their behaviors make complete sense and actually often serve them well. Help them to manage their environment with their environment, manage input coming into them, get input that is somehow serving them well. Helping to regulate the nervous system starting point is so important. And then we can interpret behaviors and also then shape behaviors and provide alternate sensory input types of sensory input, movement opportunities. I love the term sensory motor lifestyle because it's about how you design a child's day so that their nervous system is getting what it needs in terms of sensory input, in terms of movement, in terms of cognitive stimulation and social engagement. Those are additional parts of how you might design a child's day to really set them up for success. So even the most difficult things like self injury aggression can be enormously challenging. But I've seen when you start from a place of understanding and you gradually build your understanding of a child's neurodevelopmental profile, you can make really dramatic improvements very quickly. That is a, you know, I hope that that can be a point of hope, you know, for families that, because I've seen it, no matter what, how dire a situation may seem, there is always a way forward and change can come very quickly. It's just that it often does take a skilled multidisciplinary team to be able to help, you know, with that change.
• 11:36
  Speaker A: I recently had an episode that I recorded with a, like a master facilitator, like a dialogue facilitator. And I think that hit on a word that's becoming sort of my word of the year, which is staying, which is curiosity and curious. Because I believe that if we are innately as primates driven to stay curious about our offspring, right to understand them, but if we can extend that to the team who is also having eyes and know that the rooted, that it's rooted in that same place of curiosity to aid them, it can allow for the stress hormones to sort of even out about that progress. Because I think there's a lot of, I know there's a lot of expectations that aren't met or sadness or the desire for growth in so many ways to be quicker, faster, catch up, style. And I think the sooner that that mental framework from parents comes from a place of what's the next right thing to do for your child and that it's not all going to be at once. And when is in the, there isn't actually any goal posts or destination. There really is just the growth. And the ever changing growth is the growth. I mean it really becomes this like cyclical environment. And it is hard for a lot of parents. That's where that frustration and exhaustion and burnout comes from because the progress can seem so minuscule. And yet in hindsight, there are incredible leaps and bounds of what our children got to show us who they are and how they are and why they are. How would you phrase your own directive to parents that such as myself, I'll be honest, I mean I, I've worked through this in my own ways, but I'm seven, eight years into this now. There is a constant sense of bracing for what's next or trying to figure out a deep, you know, behavior that is not really they're growing out of or understanding their dyspraxia and dysgraphia and their autism and then ADHD component, boys, girls. I mean, the complexities are endless. And to stay present and now to that development takes a lot of conscious effort.
• 13:44
  Speaker B: It does, it does. So, I mean, I think the first. And it reminds me of a mother who once said to me, for her child, she said, isn't there a way that we could just look at neurotypical developmental milestones and then you could just teach him each one and plug them and solve it?
• 14:02
  Speaker A: And.
• 14:03
  Speaker B: And I thought, oh, that's the first we. You actually have to get rid of the framework of neurotypical developmental milestones is what you're trying to achieve.
• 14:11
  Speaker A: Exactly.
• 14:12
  Speaker B: That will never work because your child has their own unique set of developmental milestones. And as you said, our job is to help them progress along each one and to even discover what those are each step of the way. So I think the first step is remove the comparison to a neurotypical norm. And then by doing so, you're taking off the handcuffs, you know, the chains that are actually binding you down and allowing for a really magnificent developmental trajectory, but one that is more unique. It can be harder to navigate. You don't know as much about what to expect. But I think it's beautiful and I think it brings a lot of good words.
• 14:52
  Speaker A: It really is something that I try to inspire in others, is that choosing to interact with the world with your special needs children versus isolate is always the right choice. And that goes in terms of from even as small as getting your child to a school, a specialized school with a team of five or eight or 10 practitioners who have eyes on them. I know there's a great seesaw effect of some parents, and I would say mothers, because we are the tendon befriend, you know, CEOs of the children, primally, that it's a. It's not, it's not a loss to have extra eyes to then give input about who your child's becoming. And it doesn't take away from you knowing your child best, but that they can end up thriving quicker and more rapidly. Because you lend, I always say, like lending them out to a full team because, you know, I always say there's so many of these traits that light up for us about our children and they only do it with us or they're only attached in one capacity. And I think they should be allowed to have that and show that to multiple people. Right. And you know, that's hard for any parent to do. Right. To have your children Test the nest. Testing the nest looks a lot smaller and not as, you know, grand as a typical child, but it is still them testing out their world. We have to give them the availability to do that within their, their specialized classrooms, in their specialized learning environments. And you know, I laughed yesterday. My daughter Millie said scissors cut, scissors cut on her device. And I thought, the last thing I'm doing is putting a pair of scissors in your hands. Well, she apparently loves doing it at school and she uses very tiny, you know, the self, the sensory grip ones. But it does become this really give and take of parental protection and desire to healthily have them grow and yet still push the limits. Even as a neurodiverse child. It's already hard to do with a typical child. Right. It's already difficult. You know, my teeth, my tweenager wants to go downtown in my local New Jersey area by herself now. And I'm like, you know, that worry is relative. It's relative. So, you know, I think if we can take a sense of like the. I know that I'm not unique as a parent of three children, one typical, two neurodiverse, one boy with non speaking autism, one girl with unspeaking autism, two and a half years apart, I'm still not unique. And I think if special needs parents that come into your practice like Cortica can say, I feel unique, my child's unique, but I as a whole, this is not unique. And there are ways that I need to lean into and accept that are going to help my child become successful.
• 17:37
  Speaker B: I agree with that because there are. And both can be true.
• 17:41
  Speaker A: Yes.
• 17:42
  Speaker B: Right. Unique features, but also lots of similarities in experiences and so forth. So let's embrace both.
• 17:49
  Speaker A: Yes.
• 17:51
  Speaker B: And do what's needed.
• 17:52
  Speaker A: And I think, I mean, it sounds cliche to say, but when you have an email chain that you know is of your people that are helping your child, always in one space, there's a mental load that is slightly diminished, which is great. Right. We want to like lower that, that heavy mental lo. And two, and you know, one of my favorite fellow autism moms, Kate Swenson, had a whole aspect or a whole hashtag that said more than a caregiver unit.
• 18:18
  Speaker B: Yes.
• 18:20
  Speaker A: You're giving that to the families too. And certainly didn't start Cortica for like, you know, a central New Jersey mom in mind. There is more energy than to be spent on life and living. And for me that looks like just getting the kids outside to walk the dog. Right.
• 18:33
  Speaker B: And I honestly, I can't overstress how important that is Important?
• 18:38
  Speaker A: It is. Yeah, it very much is. And I think I hope as you, as you all expand and grow and more are aware of this being an option for their children that are especially newly diagnosed and on the younger side, it sets the tone and the train is moving along on very steady rails. That was one of the things that it took years for me to lead because there was a lot of just input on my end. And to know that a centralized system that you have built is not only scientifically proven to work from all the research that is done, but is going to benefit from the generalized standpoint of the families in their homes as well. I can't thank you enough for, for having this be, you know, yours. This is a child of yours, right? This is like this is a product of all your work and based on who you are and as I say to my children every night, and I'll say it to you, Even though you're Dr. Suzanne Goh, you know, I'm proud of you and you should be proud of yourself because of what you are giving and providing to families like mine. So thank you so very much.
• 19:35
  Speaker B: Thank you. Than you. I mean, I, it's, I.
• 19:38
  Speaker A: Can you believe that this is your life's work? Were you always someone that, that, that desired to understand the mind and the brain? Like what, what did that look like as young Suzanne go Well, I will.
• 19:48
  Speaker B: Say truly a day does not go by that I don't marvel, you know, at getting to be able to do this amazing work that doesn't feel like work. You know, it really is a passion. It's brought me in touch with so many families and children who inspire me, who have changed me, you know, who have made me a better person. And so I do feel so lucky to have, to have experienced that and to get to be able to get to do this. You know, I, there's. I had one very formative experience when I was in high school and I've written about this in my book a little bit. But you know, getting to volunteer with neurodivergent children when I myself was a high school student enough in a setting that was just a joyous summer camp where they got to be children. You know, one of the things that I was as camp counselor volunteering for the summer camp back in Toledo, Ohio, because I was a swimmer. I'd been a competitive swimmer since a young age, college because I was a strong swimmer. I was the camp counselor who was assigned one to one to be to swim with the children. I remember swimming with, you know, young children with spina bifida and cerebral palsy. And it was my ability that allowed them to experience this joy of like freedom of swimming, which they love. And I think that for me was just feeling that something, an ability I had could unlock a set of abilities in someone else. There was nothing. I'd never experienced anything so wonderful in my life. And I think that kind of planted the seed. And of course, it wasn't until many years later, many years of, you know, schooling and medical school and residency and research and all kinds of things, that I got to the point where I could then translate that into what Cortica has become, which is really motivated by this desire to support people to experience their own abilities, their abilities for the purpose of experiences of joy.
• 21:42
  Speaker A: Yes, yes.
• 21:44
  Speaker B: The big picture view. And underneath it, of course, is a lot of understanding, very technical knowledge about. Right. Like what kinds of medical tests are needed, you know, genetic testing and EEGs and brain MRIs and autonomic nervous system testing, mitochondrial testing. All of these are so technical but have such an important role. And so it's just about bringing together all the pieces on medical side, developmental, behavioral, mental health, and weaving it into a really, what I hope will be a beautiful journey for a child as.
• 22:20
  Speaker A: Something that I framed for myself. And I know it's a phrase that's used in different industries and in different fields. I don't have to do this. I get to do this. And I get to every day do something that's so complex and so worth it, which is lead these little, you know, is isomers of me into like their best selves. And time is the only commodity that we never get to purchase or, or get back. And to stay present is the greatest gift of the complexity of understanding children with, you know, my children with non speaking autism is that because of who they are, it forces me to stay so present and in turn gives me time like I never experienced it before. Right. I took for granted time. Any, any, you know, youth is wasted on the young. But, but even as a parent of a typical child at 29 years old in New York City, I never thought of time and was. I don't think I was ever as present with her as I am now with her because of her siblings being who they are. Right. And that is a gift that comes with pain. It comes with some level of discomfort. It comes with. And that's where the growth is from A, for a parent in this really crazy journey of complex diagnoses and, you know, educational, you know, autism education and whatnot. So thank you for what you do and for sharing a little bit more about, you know, what Cortica offers and why. Why it really will become a place where, as I share with someone, when they get a diagnosis, well, who do I call? The beautiful part of this, and I'll list it in the in the summary notes, is that you can literally just call Cortica center and begin the process. It's that simple.
• 24:04
  Speaker B: Thank you. Thank you so much.
• 24:06
  Speaker A: Thank you so much for your work. And this is a wonderful conversation for parents of autistic children, their caregivers, educators, and really, anyone that's touched by the lives of autism. So thank you again. And until time on the insurance podcast.