April 21, 2022
Cindy Lopez:
Welcome. My name is Cindy Lopez, the host of this CHC podcast, Voices of Compassion. We hope you find a little courage, feel connected and experience compassion every time you listen.
So your child was just diagnosed with autism. What do you do now? Well, the CDC and the national health statistics reports estimate that there is a 1 to 2% chance of a child being diagnosed with an autism spectrum disorder or ASD and that the rates for boys are higher than that for girls. So if your child’s just been diagnosed with autism, you’re not alone. Listen to this conversation with CHC experts, Seema Motwani, occupational therapist, and Gina Baldi parent trainer in our early support program for autism as we discuss services and therapies that might be important for you to consider for your child and where you can access those services. Welcome Seema and Gina!
Gina Baldi, MEd:
Hi, Cindy. Thanks for having us. I am Gina Baldi, the parent trainer for the Early Support Program for Autism – ESPA, and I have been with CHC for about seven-eight years now, and I’ve worked in the field of autism for lots and lots of years. I’m also a parent of two young children.
Seema Motwani, OTR/L:
Hi, I’m happy to be here. My name’s Seema. I’m an occupational therapist. I’ve been one for nine years. I’m also a new mom to a six month old baby.
Cindy Lopez:
Thank you Seema and Gina for being with us today. So this particular episode is really targeted to those parents or caregivers whose children have just been diagnosed with autism. Can you talk a little bit about what it means when we say that a child has autism or has an ASD diagnosis?
Gina Baldi, MEd:
Well, I want to start by saying technically what it means is a child has a clinical diagnosis now and can receive treatment of typically ABA, occupational therapy and sometimes speech therapy, depending on the child’s needs. It doesn’t change who the child is. The child just now has the diagnosis, and so it’s always looking at who this child is and what best supports their development.
Cindy Lopez:
Your child is your child, that hasn’t changed. There’s no limit to what they can learn. It’s about understanding your child’s needs, and so Seema what can parents expect if their child has been diagnosed with autism?
Seema Motwani, OTR/L:
I think when a parent first finds out their child is diagnosed with autism, they go through a lot of emotional feelings themselves, is this curable? What do I need to do? What other therapies do I have to do? It can be really overwhelming at first, and I think parents should really just take a step back and think about the strengths and challenges their child has and go from there. So if social interaction is really impeding functional abilities, then looking into speech therapy to help with that. If a child is having challenges with sensory processing, not realizing if it’s hot or cold or, you know, sensitive to touch or won’t get dressed because their clothes are too itchy, you know, and again impeding that function then look into OT. So I think it’s really important like we said to look at what your child is capable of and what’s hard for them because any child with autism is so different in what they are able to do.
Cindy Lopez:
Yeah, and I think that for many parents, especially if they’ve just received the diagnosis, they get focused on the diagnosis, right? And sometimes that’s hard, but also that means your child’s going to be able to receive more support and services that perhaps weren’t available to them before.
Seema Motwani, OTR/L:
Yeah the diagnosis can be jarring, but it really just means like now you have this reason to go and get the support you need.
Gina Baldi, MEd:
Certainly, of us can look into the future and say what a child’s needs are long-term, however, looking in the moment as Seema kind of mentioned and figuring out what supports that child now is super important, as well as there’s no limitations for how this child can progress, and it doesn’t have to look one way. It’s really cliche to say, when you’ve met a child you know on the autism spectrum, you’ve met one child, but it’s true, and so what works for one child doesn’t always work for another child, and that’s why individualizing programming is really important and that’s, again, what the diagnosis gets is programming services for a child.
Cindy Lopez:
There are really no limitations, right? I think that that’s freeing for parents, and I really appreciate you saying that, Gina. Can you also talk about how parents might be seeing autism show up in their child whether it’s around verbal issues or behavioral, emotional, social, sensory?
Gina Baldi, MEd:
Yeah all of those areas can pop up. I work with parents one of the things they’ll mention that they saw early on was a lack of verbal communication, so a delay in speech is typically one of the signs that a parent gets concerned with. And then as they kind of look further into it or get more information, they might see some of, as Seema mentioned, the sensory social issues around noise or touch, light irritations, things like that. A lot of parents what they will end up seeing or talking about later on is the underlining anxiety with the social interaction, being a part of a group and understanding the nonverbal communication being able to read the environment, read the individuals and then engage in what those unwritten rules are of the social norms. And that’s where things get more difficult in engaging in I guess the learning opportunities.
Seema Motwani, OTR/L:
Yeah. I agree a lot of the times when I’ve talked to parents the biggest question is, “will my child make friends, will they have a life fulfilling with people,” and all of that. And I think a lot of the times children will grow up and they figure out these things on their own, but with a child diagnosed with autism, they’re able to have these social interactions, they just need the support and need to learn these skills in a teachable way about what are social norms and role-playing that what is a community helper versus a stranger and practicing that and taking all of those skills to be social, to be in a group and breaking them down and making them teachable is just that extra support that child needs.
Cindy Lopez:
So thinking about support and early intervention, getting services early seems to be really important. So what does that look like?
Gina Baldi, MEd:
Well, I’ll tell you, it’s really scary for a parent when they’re told earlier the better, right? And then, you know, they go and try to get services and you’re on a wait list for six months to a year. However, there are a lot of opportunities to learn the techniques, to start working with the child, as well as seeing what is available. Many times the push is on the ABA program, getting a good occupational therapist on board, a good speech therapist on board, which many times you can do quicker than maybe the ABA program can be really helpful.
Cindy Lopez:
And Gina, what is ABA for our listeners who may not know?
Gina Baldi, MEd:
It’s applied behavior analysis, under the umbrella of ABA, you can use a handful of methodologies. The developmental methodologies are called Early Support Denver Model and Pivotal Response Therapy. So there’s a lot of other developmental approaches. They’re not really technically able to use them under that umbrella of ABA because they’re not research-based, but they do work. And then a lot of companies will do a more traditional behavior approach as well. So sometimes it’s a combination of those things. Research will show that the developmental approaches teach through that social interaction and it generalizes to the peer to peer interaction, which again is more complex, and so they teach through play.
Seema Motwani, OTR/L:
Also to add to that before going to grad school to become an OT, I was an ABA therapist for early intervention. A lot of what I remember doing was very goal oriented. So for the younger students it’s really like, what is the main goal right now? Is it responding to their name? Is it asking for more? It’s what are these specific goals and working on that in a play-based manner, and offering opportunities and trials, similarly and also different in OT is we have these umbrella of goals we keep in mind. And in a play-based environment we work on those schools that help make us more independent and function with the skills we have. So they do go hand in hand. I also think it’s important to know that even if you do some research and look for sensory activities or how to work on certain things like the internet has so many opportunities that it’s okay to work on that with your child at home too. We’re going to give you some activities that we think could work at home. We’re going to do those activities in therapy, but what’s really going to help everybody is that collaboration. So I think if you are waiting on a waitlist and you are unsure what to do there are many resources out there to see what you can start at home and then go from there.
Gina Baldi, MEd:
Absolutely. And I want to add a little something to that because what happens is as Seema mentioned it’s not an overnight fix, right? These things happen in combination and in practice over time. And a lot of parents will want to know what is clinical and what is maybe neuro-typical, and you’re not going to be able to divide those things out. Once you have a concern for your child in any given area, everything can seem concerning. And so you don’t really have to categorize it in what’s clinical , and what’s maybe developmentally appropriate. You’re working on everything and you’re just supporting your child in any given area of need along the way and typically it’s the combination of things you’re doing that is supporting the child’s development. So in the same manner, you’re not going to be able to separate out, is it the ABA? Is it the OT? Is it maturity? You just want to keep seeing progression.
Seema Motwani, OTR/L:
Exactly, exactly. And it’s that team approach, so It’s just helping them and meeting the child where they’re at and seeing progress from there.
Cindy Lopez:
I’m wondering are there other kinds of evaluations or therapies that might benefit a child who has been diagnosed with autism?
Seema Motwani, OTR/L:
Yes. So this is one of those overwhelming things I think parents probably start with is, okay, so now I have the diagnosis of autism and we did say it’s what gets you services. But from there you actually have to get more evaluations. If you are seeking OT, you do need an OT evaluation to see what areas of need the OT should work on and how often, and when, and the same with speech if you do want a speech therapist, then you have to take a speech eval and any other of those areas. From like an early intervention aspect, I don’t think you need a specific eval for ABA. I think the autism diagnosis and early intervention still under three years old, I think that could be the first step because that is the only eval you need for that. But to get other services, you do have to seek out more evaluations. And at the school because the school is one of the first places parents go to for resources it’s a whole different program using the IEP, which is an individual education plan and working with the teachers and working with the school OTs and school speech therapist. So it’s really hard where you have to figure out, like, where do I want to reach for the support?
Gina Baldi, MEd:
Yeah, and so the early intervention as Seema mentioned, it’s under three. What happens under three is you can go to the regional center and get an assessment and potentially qualify for services. At the same time or outside of three, you can get a medical diagnosis and get evaluation through insurance through a developmental pediatrician or psychologist, something in those fields. And so the evaluations are a snapshot of who that child is at that moment. As services get going as you start to work with the child you really get to know how they learn and what works, and you get more scaled in picture of who this child is versus this kind of broad snapshot of what their goals might be and such and then after three, the regional center or at the age of three, they aren’t giving services anymore you get them through your insurance and ABA can be done through your insurance. Getting the diagnoses of autism is what gets those ABA services at any given age.
Mike:
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Cindy Lopez:
I’m wondering Gina, you referenced when introducing yourself our early support program for autism. Do you want to say what that includes and if parents are listening or caregivers are listening to this podcast if they’re feeling like that might be a program for them.
Gina Baldi, MEd:
So the early support program for autism is a collaboration between Stanford and Children’s Health Council. It is a completely free program that has no waitlists, and if you call ESPA you will talk to a clinical care manager at Stanford, and you will be able to get resources and guidance and how to navigate things like the IEP, insurance, ABA services, all of those things. If you’re interested in parent training, then you would be sent to me at CHC to receive the parent training, and it’s a one-on-one training to talk about who your child is and what may support your child in development as well as how you can shape the program to meet your child’s need. A lot of parents think whatever services are given them or what company might tell them they do and what it should look like is all they have an opportunity to engage in. However, you have a lot of say in what your child’s program is through the school system and through the home system.
Cindy Lopez:
So Gina is there an age limit for ESPA?
Gina Baldi, MEd:
No, there’s not. We really have a lot of flexibility. So we work with parents in other states, in other countries. So there’s no boundaries of location and there’s no boundary of age. Adults can even call ESPA before services for themself.
Cindy Lopez:
Oh, nice. And Seema, you’ve referenced this a little bit as you were talking previously, we also at CHC have occupational therapy services that can benefit a child with autism. Do you want to talk a little bit about what that looks like?
Seema Motwani, OTR/L:
OT looks different in a lot of different locations, in a clinical setting like CHC, we really do focus on the parents goals and what they’re seeing at home and how we can help benefit their child. We always start with a parent intake to talk about what is it that the parents are seeing and what is it that’s making the home life and community life challenging. So here at CHC, I see a variety of students, and we typically do go into an occupational therapy sensory gym, and this includes slides and swings and padded mats and balance boards, and it’s basically an indoor playground, and we get asked a lot like how does this help? And it helps in the way in that we are putting our children in these sensory fulfilling environments to help channel all their senses and it’s these sensory experiences is what’s going to help them regulate their body, especially if they’re coming in, in a more dysregulated state in order for that to be ready to learn and to be ready to take in information about everything else if that be life skills, social skills, handwriting skills, movement skills, and all of that.
Cindy Lopez:
I’m also thinking about what the child might understand or not about what’s going on with them. So what could or should the parents share or caregivers share with their child about their autism?
Gina Baldi, MEd:
It depends on the child. However, what I have found that’s most useful is when the child is ready and the parents want to discuss, you know, it’s really about normalizing what the expectations are. As Seema mentioned really early on the strength and weaknesses, and with any child they have splintered skills, right? I do really well here, I struggle here, and you look at these areas of struggle in what they have to work on. And I have worked with a lot of parents in the way of helping a child receive that information and sometimes a classroom as a whole, and help normalize it by comparing it to the academics, which we normalize need a lot easier. So, you can ask who in your classroom does really well in mathematics? And they’ll say who, and you say who’s struggles in math and they’ll say who and, you know, say so and when that person has a hard time in math, what do we do? And the teacher helps, the friends help and so as you go through subjects or any area that feels a little easier to talk about you explain that our brains work differently, and if we need help in any given area, we get help and then explain to the child there’s some areas that mama and daddy are helping, or your parents are helping your teachers helping you, where you need help.
Seema Motwani, OTR/L:
Yeah, I agree with Gina. It’s not so much telling your child, okay, you have autism, you know, it’s really talking about the areas of strengths and challenges and talking about where they need support where they thrive and having them be comfortable about speaking about those skills.
Gina Baldi, MEd:
The thing about saying you have autism too is some individuals do really well understanding that clinical diagnosis looking at it and then working on the areas and accepting the support where they need it, you know, just like anyone else. For some it’s a crutch and we have to make sure that it doesn’t mean you don’t work in these areas that you need to work in.
Seema Motwani, OTR/L:
Yeah. It’s not an excuse, right? It’s just a vehicle where you get help and support, which has been the theme of everything we’ve been talking about.
Gina Baldi, MEd:
It is self-awareness, right? As we create a toolbox for our child, it’s for us to support them. It’s to hand off to others who are working with our child and then a extensively it’s to hand to the individual as self-awareness what works for me, what areas do I struggle in?
Cindy Lopez:
Seema and Gina, I’m wondering if you have any final thoughts you’d like to share with our listeners before we end our episode today.
Seema Motwani, OTR/L:
I think my biggest advice to parents is don’t stop advocating for your child. It will come with its highs and lows. It will feel very challenging, but you are going to be the best advocate to fight for what your child needs, and you know your child best and what they need to help be as independent and as happy as they can be. So my biggest advice is don’t give up, keep trying, keep chugging along and it’s going to be okay.
Gina Baldi, MEd:
I would add ESPA was created because parents were getting this diagnosis for their child and then again, being told, go get services, and what does that mean? Or you go try and they’re not available. So instead of a parent having to recreate the wheel every time, parent after parent, supports like ESPA, parents helping parents, connecting with other parents because there is a grieving process. It changes how am I looking at my child now and what do I do as a parent? You know, a lot of parents will question how they’ve been parenting all along, and it’s really about information. The more information we get, we can adjust how we do parent, or what’s working as a parent. So as you advocate for your child, you have a lot of say in these things and getting that information from agencies out there from other parents is going to be really important.
Cindy Lopez:
For those of you who are listening out there and what more information about our ESPA program, Early Support Program for Autism you can call 650-723-3772 for more information or you can email autismsupport@stanford.edu for more information, and if you’re interested in finding out more about CHC and our occupational therapy services, you can also reach out about that to our care team at CHC that’s careteam@chconline.org or 650-688-3650. So to our listeners we really appreciate you joining us today and listening, and we hope that you’ll listen in again for our next episode and to Seema and Gina, thank you so much for joining us today. It’s been a great conversation, and I learned a lot too, so thank you for that.
Gina Baldi, MEd:
You’re welcome, absolutely.
Seema Motwani, OTR/L:
Thanks for having us.
Cindy Lopez:
Visit us online at podcast.chconline.org. Make sure to subscribe to Voices of Compassion so you never miss an episode and we’d love it if you’d leave us a rating and review. Have a question? Send us an email or a voice memo at podcasts@chconline.org. We’re here for you when you need us.
