Why The Future of Autism Care is Holistic with Savannah Jaska, MT-BC, BCAT | Part 2

0:00Welcome to Magnificent Minds, where we explore the science of child development with both heart and reason, bringing clarity, compassion and scientific evidence to questions that matter deeply to families. Today, we're continuing to talk about what it means to have a holistic approach to autism care. And joining me is Savannah Jaska, a music therapist and a specialist in transdisciplinary holistic autism care. So let's pick up the conversation by asking why fragmented care is so common and what impact it has on children and families. Yeah, I'm excited to be back and talk about this in more detail, especially for our caregivers who may be experiencing fragmented care.

0:43And when I think about fragmented care, there are a lot of examples I can think of. You know, a child maybe working on communication goals in speech therapy, but experiencing sensory overwhelm, which can make it hard to engage in some tasks where they're practicing their speech, or a child may be struggling with a behavior that's interfering with their ability to engage with other people or the environment. And what we find is that they're actually not sleeping well, or maybe they're dealing with some chronic discomfort that can be impacting that.

1:20And when these things happen, then on paper, because we know care is documented in notes and then progress notes, what do we end up seeing. What does that look like? Yes, I think what we see is a lack of progress, where I see clinicians who talk about the child's goals and how they may be on the same goal for six months and not making progress. And they continue to try different strategies, but they're not getting to that root of why the child is experiencing difficulty. And so what we see is misalignment and misunderstanding.

1:59So misalignment between different disciplines and oftentimes missing information for some. And when we talk about our framework we're asking children to do these certain skills which might be more at the top of our framework without supporting what's at the root or the trunk of the tree. All those areas that we talked about that can really make an impact on the upper parts of that framework. And what's really important to emphasize is that it's not the child's fault and it's not the child's problem. It's actually a systematic problem that that we're experiencing.

2:38So we're asking a child to perform skills like social skills and language and communication skills, and daily living skills. We know that those on our child development framework are represented by the branches and the leaves. Those are higher level skills. And yet we're often asking them to do that without the support of like the trunk, which is health and brain and body. So it's really when we talk about holistic approach to autism care, it it is one that makes sense based on how the brain and body work. Yeah. And, you know, one of the most important shifts happening in our field is growing recognition that a purely behavior focused model, is no longer the gold standard.

3:21It doesn't work well. And so shifting from a behavioral model to a neurodevelopmental model. So how do you think about that? And can you explain to parents what that means? Yes. Yes, it's a different way of approaching things. And when we talk about behavior too, we're even thinking about a purely skill based model of how we're how we're looking at the care we provide and the support that we're providing. And it really means that we're asking a different question. So instead of asking how do we change this behavior, how do we grow this skill?

3:57And focusing just on that, we're actually asking, what is the behavior or the difficulty this child is experiencing and developing this skill? What is it telling us about their brain and their body and their experience? Their lived experience. And when we start to think that way, we start to realize that looking at the behavior or what's going on on the outside is really important. It's but we can view it as communication or insight into what might be going on kind of beneath the surface and understanding the why.

4:37Why is this challenging? Why is this happening? And when we do that and we understand that, why that deeper why we as clinicians or people that are caring for this child, we actually respond differently. So examples of this that are more common, you know, I think a child covering their ears, some people may see that response and think, oh, they're just not listening or they're avoiding. They don't want to hear their teacher. They don't want to hear their family, their parent talking to them.

5:12But what we actually might come to understand when we get to the real why is that they're experiencing sensory overload. There's so many sounds that they are hearing. That that is the the mechanism that they use to, to, you know, be in that environment and not experience so much discomfort. And so key to that is coming to an understanding of each child's unique neurodevelopmental profile. So what is that. We use the term neurodevelopmental profile a lot. And we help parents to understand their child's neurodevelopmental profile.

5:50So what is that. Yes. We spoke about this really in the last episode when we talked about the branches of the tree. And so those branches of the tree are the neurodevelopmental profile. And each child has a unique profile. Each person really has a unique profile and how someone senses the world around them, their sensory system, how they move their body, how they process language, how they think and learn, how they connect socially with others, and how they experience and regulate their emotions.

6:27So all the things we talked about in that last episode, but applying it to each person individually to better understand their experience, both in the skills that they have and the areas where they need more support. Another important aspect of understanding a child's neurodevelopmental profile is also understanding that how a child develops skills and all of those areas can actually happen in a different order than we expect, too. And that changes how we support them and knowing how they learn and how they grow. And so some examples of that would be like how a child's, the skills that they learn may happen out of a sequence that's a different sequence than what we would expect in some of our developmental milestones, for instance.

7:16Or a child may learn in really focused, deep ways, and they may have passions about one topic, and they can learn a lot of different things within that topic rather than learning about a broad variety of things. And all of this means that we really have to be thinking about development in a completely different way from a traditional framework. And it also means that our traditional ways of assessing child development are pretty limited, and might not do a good job of guiding the services and therapies that we provide.

7:51Yes, I would say that if we we use them as a rule, a strict rule for every child, then it may actually do us a disservice and do that child a disservice, because many of the developmental checklists and frameworks that we use are built on averages and, and often are laying out specific sequences of skills. And what I just talked about contradicts that. Exactly. So autistic brain development very often does not follow the order, you know, the sequence of neurotypical development. And one of the great examples is children learning to read before they speak.

8:29And recognizing that then really should influence how we support their speech language development. And I think even today it's not well recognized, even though the research on this is very, very strong. I've seen children, you know, master, kind of what we think of a higher level academic skills, even though they're in kindergarten or elementary school. And, those high level skills aren't appropriately recognized and fostered. You know, so I do think as a field, we often are very still very much stuck in neurotypical milestones, and it's holding us back from appropriately supporting these children.

9:10Yeah. And I think what we can find is that there can be a lot of foundational skills learned through tapping into those interests and those, really advanced skills that that kids have. And there's still a way to access those skills. I think language is definitely one of those areas that this really can come up for a lot of people, especially with the different ways that people can learn language or children can learn language. You know, we we often think of a sequence where a child will first learn a single word and then a phrase and then a sentence.

9:51So they may say dog and then big dog or and then the big dog is barking. But a lot of autistic children may actually start on the other end, so they actually may start and speaking in phrases and people will still, you know, work on focusing on just the single words when over time, a child who's exposed to words and phrases and sentences, all of them, they may actually take those sentences as phrases. And then over time, take them apart and then start to modify them where they really are, using words as individual pieces within that, and then working backwards and then developing really meaningful communication just in a different way.

10:39And I think that the stakes of getting this wrong is that we end up holding children back, and that's the real tragedy in my view. So I think just understanding that there can be different routes of growth and to be understanding, and this is where the concept of the just right challenge is so important, because that guides you to always progress and move forward without mistakenly relying on neurotypical milestones, which we know very, very often will not serve autistic children well. And there's always there's always a path. There's always advancement possible in some aspect of learning.

11:15So growth is always possible if we're approaching it the right way. Yeah, yeah. Now let's talk about one of the most important pieces of holistic care, which is collaboration, because we've been emphasizing that no single discipline can address all aspects of development. What we find in clinical care is that each discipline often starts working in their own silo. So working by themselves examples might be, you know, occupational therapy really focusing on sensory and motor systems, but only that or speech therapy supporting communication and language, and ABA focusing on learning and behavior counseling or counselors supporting emotional health.

11:58And our medical teams addressing this biological factors underlying things. And those are all important, very important pieces of a puzzle. But when those pieces just stay separate, that's when care becomes fragmented. When they come together, that's when care really becomes powerful and impactful and meaningful for a child and family. And that's what we call having a transdisciplinary model. So it means that not, you know, disciplines aren't just working alongside of each other, but truly working together too, it is, you know, when we say transdisciplinary, it's kind of a bigger word.

12:46But what it really means is that it's the most advanced level of collaboration. It's and I think when families go out and they're trying to get care for their child, they may experience many different forms of collaboration, different levels. They may find, that their child needs multiple therapies and medical care, and sometimes those, those and care can be under the same roof. But the, the clinicians are actually still just working in their own, their own lanes. They stay in their own lanes.

13:22The OTs have their own goals. Speech has their own goals, medical has their own goals and things going on. And no one's really accounting for the other or what's going on with the other. It's an analogy for this would be like a cake, right? So when you make a cake, you have a and flour and vanilla and you mix all of that together and bake it. And when it comes out, it's one thing. And you can't take out the egg again. You can't take the flour out again. And so it's truly integrated and nothing works in isolation. Because again, we know that children, they don't live their lives or learn skills in isolation.

14:00There's so many different things happening in every experience that they have. And so their care really shouldn't be siloed either. And for families, it means that their experience is completely transformed. So rather than multiple disconnected therapies and having to be the bridge and the glue between them, they actually are working with one cohesive team that has a full understanding of a child, and where every professional knows what's happening in the other therapies and the medical care and everything just comes together so well, like a cake. Yeah. And that's really the highest level of care, which is transdisciplinary holistic autism care.

14:41Now this kind of approach that's holistic, where there's a high degree of collaboration happening amongst professionals and between professionals and family members. This is what we mean when we say whole child care. And, part of that, and in some ways, I think the most important part of that is recognizing that a child is already whole, just as they are. So really key part of holistic autism care is also recognizing the child as whole. Our role is not to change who they are, but to understand them deeply and to support their growth in a way that honors their identity.

15:19And so there are a few key parts to this one. Recognizing strengths, not just always focusing on challenges or problems. We know that developmental evaluations, unfortunately, can create a long list of problems or deficits, but we can't allow that deficit based mentality to guide how we then approach, support and therapies. So we really want to adopt a strengths based approach. It's so important. Of course, as well as part of this holistic approach to support autonomy and choice and allow children to be an active voice in, in the care that they receive.

16:00And a transdisciplinary team knows how to do that, even for children who are very young and who are not speaking. Of course, building trust and safety. We know nobody can learn and grow and connect when they are feeling unsafe, when their nervous system is in that state of chronic stress or fight or flight response. And then we know part of holistic care means creating environments where children can be them selves, no matter what they're nervous system is. And so we need to have, spaces where their preferred, sometimes repetitive behaviors where they can engage in those for certain periods of time, where there are sensory rooms, where they have the sensory supports available to them, and where we can modify things like visual stimulation and auditory stimuli and tactile and, and and make a child feel truly comfortable and safe.

16:54So as we begin to wrap up the conversation today, could you tell me a little bit more and help parents visualize what this kind of care actually looks like day to day? Yes. So it's really important for a especially a caregiver to know what are some of the gold standard pieces that they're going to see in their child's team when it comes to collaboration? Because collaboration and levels of collaboration can fluctuate, throughout a team as, as the, as their child's care moves forward. But there are certain things that if you see these things, I would say they are really the gold standard of collaboration and really showing, positive outcomes, for your child too.

17:39So I would say a therapist, like maybe a speech therapist and a behavior therapist working alongside each other in the same session. Rather than, you know, working separately or one therapist sitting to the side of all the others working. So really working together to to support the child from their each their unique expertise. Maybe another example would be an occupational therapist supporting a child's regulation while they are practicing their communication.

18:15A medical professional who is addressing sleep or GI concerns that they heard about from the teachers or clinicians who are doing therapy or school with your child, and they know that there's something medical happening during those times that is impacting the child's ability to feel well. And so they they got that information from others on their team. Team meetings that happen or collaboration that happens more formally where disciplines are aligning on their goals and strategies.

18:53And, you know, at Cortica, we use this framework we've been talking about to really guide those conversations. And our our teams ask, what do we know about all of the areas of this tree, and do we have all the information? And oftentimes there can be information missing. And so then it's our job as a team to find that information and make sure everyone knows about that information and can use it appropriately within the context of, of their, their setting. And then the last piece would be your involvement. So as a caregiver, how much are you involved?

19:31And is your team, you know, really providing you with that information and coaching you through some of these changes or new strategies that they're using in real time, rather than just giving you the next referral or giving you a recommendation and just leaving it at that. So if a parent or even a professional is listening today and wants to move toward a more holistic approach, what's one place they can start? If you are a clinician, then I would say be open to learning from others and seek new knowledge even beyond your your discipline.

20:09Ask questions like things that you don't usually ask or think about. How is a child's sleep? What is their sensory system, what are the possibilities for their communication? And then go to those experts and learn from them. And if you run into conflict with maybe another discipline, take a step back, because oftentimes it's language and jargon that each discipline has their own language that they're using, and that can often disrupt the connection between two disciplines.

20:45So try to refrain from using that jargon and work together to truly understand each other. By asking questions and sharing information. But most importantly is do not forget that the main goal that everyone has is the client or the client that you're serving and working to understand their unique lived experience. That is the thing that connects all of us together. And I will also say that, you know, challenge. I challenge clinicians and leaders in healthcare everywhere to take steps to make systems that make collaboration easier for everyone.

21:30And the last thing I'll say is if you're a caregiver and you're, you know, you're seeking care for your child or you're in some, you know, a system right now I would say, you know, ask your child's care team for more. Ask them to collaborate and ask them questions. Seek advice and make sure you're seeking advice from clinicians that are always learning and finding good resources for you. And remember that you are also a part of the team, and that the information and ideas that you have are just as important.

22:06And they are important for your care team to know about and hear. So share what you know, collaborate yourself, be a collaborator and you know, you know, your child in so many different environments that professionals don't. And that that information and that perspective is so important. And you are a vital member of your child's care team too. Thank you so much, Savannah. This was an amazing conversation, and I hope that we see more and more parents using these terms and these ideas and embracing them and talking about holistic autism care and transdisciplinary care and and expecting collaboration from their professional teams.

22:49And I just think that so much good will come of this. So thank you for being here today. Thank you to all of you who are listening. If this episode resonated with you, please share it with another parent or a clinician who you think might benefit. Thank you so much for being here and we look forward to seeing you next time.