Including Children with Autism Spectrum Disorder, Part 1

Including Children with Autism Spectrum Disorder, Part 1

Jennifer Fung: Good afternoon, everybody. Thank you all for being here to join us for our second inclusion webinar of the year. Today's webinar is very exciting. I can't even tell you how excited I am. Today is the first in a two - part webinar series on including young children with autism. Today is our first session. Our next episode will be in August, and we'll give you a little preview of what that episode will be about.

But my name is Jen Fung, and I am the inclusion lead at the National Center on Early Childhood Development, Teaching and Learning. I am a White woman. I have blonde hair that I'm wearing down around my shoulders. I'm wearing a denim jacket, and I am sitting at a desk coming to you live from a studio in Seattle, Washington, where I live. I am thrilled to be joined today by -  Well, I was going to say two incredible women, but two incredible women and then two incredible young men.

I will have my co - hosts introduce themselves. Today, I'm joined by Dr. El Brown, Brandi Black Thacker, Ricky II, and in a moment, we'll meet Colton. Dr. El, do you want to say hello?

El Brown: Hello, everyone. I'm excited to be here today. I am a Black American woman here with my young son - well, not young, son. He's 17 now. Oh, mind blown. We are excited to talk about autism, not only from the perspective of a parent but that of a child, as well.

Ricky II: From the perspective of a son with autism, as well.

El: Boom, bang, pow.

Jennifer: That's what we want. Thank you. Brandi, do you want to say hi to the folks at home?

Brandi Black Thacker: I would love to. Hey, everybody. It's nice to be with you today. I'm doing a little double duty. I'm just going to tell you up front. My name is Brandi Black Thacker. I'm the director of TTA Strategy and Content at the National Center on Parent Family Community Engagement. More importantly, today, I get to come to you, too, as a mama.

As Jen mentioned, my son's going to be joining us in a little bit, who's also on the spectrum. I identify as a White woman. Maybe I should sneak in the word Appalachian, given the accent. Today I have on a black top with a black - and - white flowered dress, a little poofy hair for your viewing pleasure, and a big smile. A big smile for you always. I'm happy to be with you all.

Jennifer: Well, thank you all. Like you can see, we all have big smiles. I can't wait to share their content and the perspectives that you are all bringing today. Thank you for being here.

Just a quick reminder to our viewers. Again, thank you for joining us and a quick reminder to download your viewer's guide if you haven't already. The viewer's guide and a copy of the slides of today's PowerPoint are available in your resource widget, which should be at the bottom of your screen.

Let's jump right in. We've got a lot to talk about today. As usual, probably not enough time, but we're going to do our very best. Today is the first in a two - part series on including young children with autism. During this webinar, we are going to focus on sharing information about autism, including traits, characteristics, and strengths of those who have an autism diagnosis. We’re also going to be exploring family perspectives on autism, inclusion, and meaningful support.

The reason why we're starting with this, in August, we will talk about strategies and supports to create learning environments that are designed to meaningfully include all children, including young children with autism. But today we really want to just start out talking about autism, really centering and elevating the perspectives, like Ricky II, wisely said, of individuals with autism. Because that's the best way to learn about autism. We wanted to do this first because we want to hopefully create a common understanding about autism, about the characteristics, the strengths, traits you might see in an individual with autism.

Of course, like I said, the perspectives and the experiences of individuals with autism, that once we hopefully have that common understanding, our Head Start staff can really use this information to provide supports and use strategies that are meaningful, that are effective, that are identity - affirming, and that result in inclusion and a sense of belonging for all children. We will get to strategies, but today, we're really here to explore autism and to center and really elevate the voices and the perspectives of autistic individuals and their families.

Before we talk about that, there are just a couple things that I wanted to introduce today, some models and some approaches that really inform and shape how we're sharing this information, especially as we talk about characteristics or traits that are commonly associated with autism. And especially, again, the experiences of individuals with autism. The first thing - this kind of goes without saying, but it's definitely worth mentioning, in general, but especially today, as we're talking broadly about the diagnosis of autism spectrum disorder and including traits, characteristics, strengths that are often associated with the diagnosis.

The disability community, including and especially the autism community, is really diverse. It represents a really highly diverse group of individuals. Further, the term autism or autism spectrum disorder is really referring to a broad range of learning characteristics, strengths, traits, abilities, behaviors. No single person is representative of the whole spectrum. We really want to acknowledge that today.

It’s important to acknowledge that while autism might create some shared experiences, each individual experiences their own autism in a unique way. As the folks at the Autistic Self Advocacy Network, or ASAN, as they say, there is no one way to be autistic, and that's OK. That's great.

Before we move on, a quick note about language. You might have noticed that I'm using both person first language, talking about an individual with autism, and I'm also using identity first language, saying autistic individuals. This is intentional. Your viewer's guide has more information about person first and identity first language and some of the history, including why we are intentionally using both person first and identity first language today.

The next approach that I just wanted to touch on and make sure that folks are aware of are what we call models of disability. There are lots of different ways, there are many different models of disability that really help to, or they shape and they inform how people, how systems, how institutions kind of view and perceive disability. We think it's important to be aware of some of the common models because knowing what those common models are can help us kind of look to our own ways of perceiving disability and inclusion and access. If needed, maybe begin to shift some of our thoughts and views about disability.

What you see here on the slide are two different very common models. The first is the medical model. Within the medical model, a disability is sort of seen as a problem or an issue that needs to be fixed or needs to be corrected or needs to be kind of ameliorated in some way, that an individual can access and participate and be included in their environment. When it comes to access and inclusion, the medical model looks at the impairments or the disability that an individual might have sort of as the problem. And then, with that view, kind of the onus or the responsibility when it comes to accessing and inclusion is on the person with the disability to kind of change or adapt, that they're able to be included.

The medical model is kind of the predominant model in the U.S., in many different systems - in the health system and the educational system. We wanted to bring to mind that there's another model, and this is called the social model of disability. Within the social model, disability or impairments are not seen as a burden or a problem. They're seen as a fact of life, as there is a wide range of development of learning styles of behavior, and this is normal. It just is. In fact, many individuals with disabilities see their disability as a really important part of who they are.

Within the social model, when it comes to access and inclusion, the view of the social model is that people aren't disabled by their bodies or by their disability or by their impairments, but they're disabled and unable to access or participate to their fullest by society - by a society that's not ready to adapt or to accommodate, by society's reaction to someone's impairment or their disability, and by society's, in some cases, lack of readiness to provide the support needed for folks to access and be included in in their environments. The social model does not deny the reality of an impairment but places, again, that responsibility of removing barriers to access and participation on society rather than on the individual to change or adapt in some way.

We wanted folks to be aware of these two different ways of kind of thinking about and perceiving disability. I continue to strive to adapt my own mindset towards the social model. And then, as I sort of just alluded to, some of these approaches, some of these models and philosophies, they might feel unfamiliar to folks. And not only might they feel unfamiliar, they might feel kind of contradictory to the way that we've learned.

And when I say that I mean myself. My own teacher preparation program, the society that I grew up in, my own, kind of personal and professional experiences were very much shaped by the medical model. I'm engaging in this work of learning, of unlearning, and relearning. That's OK. I invite others on the webinar to relearn and unlearn alongside me. I'm not here pretending I'm an expert. I do not identify as having a disability. I am not autistic. I'm coming here to facilitate a conversation and really to center and elevate, again, the voices and perspectives of those who have this lived experience.

If this feels like the space you're in, welcome. We're all at different points in our own journeys. Thank you for being here, and now let's get to the best part. Let's talk about autism. Today, like we said, our goal really is to explore autism, to talk about some common learning characteristics, some common traits that are associated with the diagnosis that you might see or observe when you have a child in your program, when you know somebody who has autism. And then really wanting to put the most emphasis on learning about autism and about what individuals with autism want us to know about autism.

This quote that you see here on the screen is from the Autistic Self Advocacy Network. In your viewer's guide, there is - this is just part of the ASAN's definition or kind of about autism. Your viewer's guide has more information about this and has a link to this page on the ASAN website. But this says, "Autism is a developmental disability that affects how we experience the world around us. Autistic people are an important part of the world. Autism is a normal part of life and makes us who we are. Autism affects how we think, how we communicate, and how we interact with the world. Autistic people are different than non - autistic people, and that's OK."

That, as I said, is a quote from a really important advocacy organization, the Autistic Self Advocacy Network. We'll hear a little bit more from them as we engage in the rest of the webinar. But right now, I want to show a video. This is a three - minute video actually from a PBS show called "In a Different Key." And the title of this video is "What's it Like to Be a Person with Autism?" Let's take a look at what folks with autism want us to know about what it's like to be a person with autism. And as you're watching this video, please feel free to reflect, whether that's in your viewer's guide, to share questions, or share reflections, either personally or in the chat, if you'd like.

[Video begins]

Rob Resnik: Matt, you want to say anything else? You can say anything. Go ahead.

Matt Resnik: Run errands.

Rob: Matt wants us to know what his schedule is and what's next on the schedule which is of primary importance to him for today.

Lindsey: I mean, I've always been proud to say that I have autism because we have so much more to bring to the table.

Naya: People who, like, play music, and they may be on the spectrum. You got people who might be good doctors, good baseball players. We have something to contribute to society if you give us a chance.

Dennis: It's kind of like a zebra's stripes. No two people with autism are exactly the same.

Noah: There are a bunch of moving parts to this. I mean, autism is just one of them. It's not all of who I am. I'm more than that. I'm Noah. I have my hopes, I have my dreams, I have my fears, I have my feelings just like anyone else.

Emanuel: We autistic people have struggles, but we have to adjust for others. But I feel like society has to make accommodations for us, as well.

Andrew: As much as people should accommodate for people on the spectrum, we, as self - advocates, should also acknowledge that we need to make some adjustments for the other side, as well. And I think once both sides start to make that, make that leap, that's where the real progress happens.

Speaker 1: What would you like people to know about you? How about, even though I don't talk, there's a lot going on inside, right? Just because you're not verbal doesn't mean that, that you're not a thinking, intelligent, bright human being. That's what I think she would say. What do you think, Mol?

Tom: When you call someone low - functioning, it dismisses their strengths. When you call someone high - functioning, it dismisses their struggles.

Paul: We sometimes go out to the mall, and sometimes we do karaoke. [Singing] Start spreading the news. I'm leaving today.

Paul: Everybody should know about autism because they have to learn a lot more. They have to learn much better, and they have to learn about tolerance.

Isabelle: I want my family and friends to see the goodness in me because my dream is to see the goodness in all my family and friends.

Adrian: I'm not that little boy that used to flap his hands or bang his head on the floor. I have changed drastically through that. And now I see myself as a better person that can help others with autism.

Anthony: And now let's talk about something different, shall we?

Speaker 2: Sure. What would you like to talk about?

Anthony: We can talk about heaven.

[Video ends]

Jennifer: Please, like I said, continue to share your reflections, share your thoughts, share questions you might have after watching that video and in general. We have some folks in the Q&A if you have a question that you'd rather ask for only our presenters and Q&A supporters to see. Or share your thoughts in the attendee chat.

Let's talk just a little bit about the autism diagnosis, and then I'm going to stop talking. When a professional is doing an evaluation, when there have been maybe some questions about whether a child might have some characteristics or traits that are commonly seen on the autism spectrum, professionals are looking for behaviors, for characteristics, for traits in two different areas that you see here on the slide - social communication and what's called restricted interests and repetitive behavior.

When we're thinking about differences or delays in social communications and interactions, the professionals are looking for differences in social emotional reciprocity. This includes differences in how a child shares interest, in joint attention. You might notice a child who shows items to you less frequently. That might include holding something up, bringing something to an adult to share interest, pointing to an object to share interest.

And then you might also see less what's called triadic eye gaze, again, with that intent of sharing interest. That means that a child, if they're interested in something, triadic eye gaze means the child might look, say, if it's at an airplane, might look at the airplane. Look to their adult who's near them to say, "Do you see this?", and then look back at the at the object of interest. That is what we call joint attention or triadic eye gaze. You might see some differences in that in a child who has autism.

In this category of social communication, you might see some differences in developing relationships. Oftentimes, they're looking to relationships and sort of the quality and characteristics of relationships with others who are not the primary caregiver. You might see some differences in nonverbal communication or behavior used for social interaction. This might be eye gaze, as I mentioned. This might be differences in the use of gestures or maybe differences in facial expressions. This is what professionals are looking for when they're looking for these differences in how those nonverbal behaviors are used for social interaction.

We know that children with autism have as many facial expressions, use as many as facial expressions and as broad of a range of facial expressions, as non - autistic individuals do. But it might be that you see those facial expressions directed less frequently at an adult or a caregiver to sort of share in a social interaction.

I do want to notice - or, I'm sorry - note that while we're talking about social communication that a delay in expressive or verbal language, spoken language, or lack of spoken language is no longer a diagnostic feature of the criteria for autism spectrum disorder. It used to be that a child did need to show a delay in spoken language, but they do not need to show that delay any longer to receive an autism diagnosis.

When we talk about the restricted interests and repetitive behaviors, as we'll talk about and as you heard in the video, everybody with autism is different. But what professionals are looking for is the presence of some behaviors including repetitive behaviors. This might be repetitive movements, repetitive speech, or the repetitive use of objects.

We might see some particularly intense interests. Everybody has interests and that's great. This is actually what I think is one of the strengths of individuals on the autism spectrum. But when doctors are doing the diagnostic evaluation, they might be looking for an intense interest in a topic, maybe of an intense interest in a particular object or even in part of an object, like the wheels on a car.

Along with this category of restricted interests and repetitive behavior, we're talking about adherence to routines. This might be difficulty with flexibility or kind of intense resistance to change, or a strong preference for routines and for things to be the same. In this category is differences in sensory processing. This might be an individual being kind of over sensitive to sensory input, or you might see an individual who's kind of under sensitive or under reactive to sensory input.

That was what doctors, what professionals are looking for kind of from a diagnostic perspective. We know that that is not the only or most important information about the traits and characteristics and experiences of individuals with autism.

We wanted to center and share this information, again, from the Autistic Self Advocacy Network, from individuals at ASAN. The full text of this, which I think is really meaningful and provides a really important perspective, this is in your viewer's guide, quoted directly from ASAN, but just to highlight a couple.

Again, knowing that autism is different in everybody and that this is OK, and knowing that there isn't necessarily a common experience for all individuals with autism, the self - advocates at ASAN put this together to kind of describe from their own perspective what it might be like to be an individual with autism. They say every autistic person experiences autism different, but there are some things that many of us have in common. We think differently, this might be those strong interests. They say it might take us longer to process and think about things. We might have difficulty with unexpected changes or surprises. And when we feel overwhelmed, it might be difficult for us to process our thoughts or feelings or what's going on around us.

I just read a study that said that, at rest, when there's very kind of little extra input coming in from the environment, the brain of autistic individuals processes up to 42% more information than the brain of non - autistic individuals. Thinking about this notion of processing, responding when overwhelmed, I think that's a big part of it. That is also a really big strength. That perception, that attention to detail, that ability to kind of feel and sense things that other people might not. That's a really important strength.

The folks at ASAN say also we process our senses differently. This might be that we have extra sensitive kind of processing or having a hard time recognizing sensory input. We move differently. Sometimes this might feel for individuals like there's a disconnect between the body and the mind. We might have difficulty with coordination, speech, or fine motor movements.

We communicate differently. For some individuals, this might mean that they repeat things they've heard, which is called echolalia. Folks might use augmentative and alternative communication, what's known as AAC. And then we socialize differently. This might mean that eye contact is uncomfortable for some individuals. Or we might have a hard time guessing how others feel.

And then, we might need help with daily living. This I wanted to read directly from the quote. It can take a lot of energy to live in a society that's built for non - autistic people. We might not have the energy to do some things in daily life. To kind of wrap this up, ASAN says, "Not every autistic person will relate to all these things. There are lots of different ways to be autistic, and that's OK."

And we'll focus, in the second part of our webinar series in August, on some of these learning behavioral characteristics and strengths and how we can capitalize and leverage some of these strengths and some of these characteristics to provide supports that are meaningful to young children. But a couple strengths that I really wanted to recognize, I've already mentioned -  increased perception, attention to detail, memory, the ability to solve problems in a novel and unique way.

These are all strengths that autistic people have expressed. "This is something that makes my autistic brain really special and really unique and really worthwhile." Wanted to make sure that, as we're talking about characteristics, we're also talking about strengths and thinking about these characteristics as strengths.

Your viewer's guide has lots more information, including, like I said, this direct quote about autism from ASAN, but also has some information about current research about autism, including the current prevalence, some information about access to diagnosis and services, and a little bit more kind of up - to - date information about autism.

Now it is my very big honor to introduce, and reintroduce in Ricky II's case, but to introduce a couple friends that I have with me today. First, I am super thrilled to introduce Colton, who is 11, who is joining us on his very first day of summer break, by the way. Colton, thank you. I'm going to turn it over to Colton and his mama, Brandi.

Brandi: Thank you so much, Jen. Oh, my goodness. I don't even know where to start, y'all. I cannot tell you how excited I am to be right here in this moment with this fella. Jen, thank you all so much for this opportunity. And I want Colton to be able to tell you a few things that are feeling really important to him. And the first thing we ought to do with our good manners is introduce you. What do you think?

Colton Thacker: My name is Colton Thacker, and I'm 11 years old, and I have autism.

Brandi: Can you tell the people what a big transition you have coming up?

Colton: I'm going to be going to middle school.

Brandi: I want to make sure they can hear you. He's headed to middle school, y'all. Jen was giving you that we just finished our last day of elementary school, and Colton did such a great job with graduation, with all of the really exciting things that he had at the end of the year. And we're looking forward - Would you say you're looking forward to middle school? Yeah, looking forward to middle school, everybody. I want to start this conversation to think about Colton Boy's autism as a superpower.

Now, Jen, there are many things that you offered that resonate with what I've seen of Colton and with what I know Colton considers about his superpowers. Colton, what do you think? There are a few things that I know are in your brain that you wanted to share with the folks that really stick out for you. 

Colton: I'm able to do complex math problems in my head.

Brandi: You all, I don't - [Laughs] I am a person where the math doesn't math. Colton can do multiple - step math problems in his head. And, Jen, you said that. I don't know if you saw me. I looked right at Colton and I was like - He's like, "Mom, it's no big deal." And I'm like, "But, yes, it is. Yes, it is a big deal, 'cause my brain doesn't do that." His does. What did you say, 42%?

Jennifer: More information, yeah.

Brandi: More information. Oh, my goodness. What do you think is the next thing that makes your brain superpower-y?

Colton: I can read at a high school level.

Brandi: We just found this one out, y'all. He can read at a high school level. Now, in our neck of the woods, middle school is sixth grade. He's coming into sixth grade, and he can read, we just discovered at the end of the school year in his state testing, at a high school level, which is incredible. He also - maybe got it honest - was a really early talker, which was pretty incredible. And I know there's another one, 'cause I heard Jen talk about being super interested in things. Like, what's something that comes up for you as we think about that?

Colton: Technology and video games is one, not in typing sectors.

Brandi: Technology and video games are some things that he - Would you say you're really good at video games?

Colton: No. 

Brandi: No? Oh, I'm shocked. I think he's really good. And then, would you say that technology comes easy to you?

Colton: Yes. 

Brandi: Yeah. He's really good at being able to figure out all things. He's often teaching us. I'm sure some of you can relate.

Jennifer: I love that. Hey, Brandi, real quick, it's a little hard to hear Colton. I don't know if he's far from your mic. If you guys maybe want to scoot close together, we can make sure we hear what he says.

Brandi: Totally. I'm going to give him permission, y'all. Don't tell nobody. You can use your outside voice inside.

Colton: I don't want to. [Laughter]

Brandi: One last thing. Can I tell the folks what I love about your superpower?

Colton: Yeah.

Brandi: I have never in my life met a more loyal and beautiful heart than lives in Colton Boy's body. He is a really wonderful friend. He's hilarious. He is curious. He loves outside. He loves music. He loves animals. I am really, really grateful that I get to be his mama because he teaches me something every day. High - five it up. Are we supposed to dab? What do we do? No? OK, high - five is good, y'all.

I mean, he's a preteen. I'm already embarrassing people. OK, two more questions. Colton Boy, I remember when we first learned about the autism diagnosis. Colton was 7 when we received his diagnosis. It was in December of 2020. One of the things that we had to learn is what needed to be adapted for Colton.

Now, I know who we're talking to, y'all. This is the world of Head Start. One of the things that I'm excited to be thinking about with you all today are ways that we can learn from these incredible young men and adapt into our worlds in in Head Start. When I'm thinking about what Colton said about, "I can do complex problems in my head with math," I'm transferring that to how we might see that show up in our classrooms or in our home visiting program options. I want to challenge you to be with me in that, and there are a couple of places Colton and I are going to pull that out here in just a second, too, in real specific ways.

But one of the things that - and we found over all this time is, as you said, Jen, autism shows up differently for everyone. And one of the things that we had to learn to adapt was about big feelings. Would you agree with that? I'm saying, like, what kinds of things, Colton Boy, do you think we learned over time about ways that you need to be supported or ways that you can help folks understand the ways you need to be supported? See if you can use a big voice. I'll give you -

Colton: Being able to explain step - by - step on what's happening.

Brandi: Yeah. One of the tricks that Colton and I talked about when he was younger is being able to give folks a play - by - play, kind of like sports. I don't know if you all watch anything like football or basketball, but kind of listening to his body and being able to say, "I'm feeling really angry, upset, mad, frustrated right now. I need to get myself together."

Colton: Space. 

Brandi: "I need space." This is one of our big tricks. And it was really important for us to learn to be able to say that to the adults at school and in Colton's life, because they often, some of those behaviors look like a lot, right? Do you remember? What's one of the things that you think that you would say to folks about how they could help little kids who have big feelings like that, that might come across as, like, really hard for the adults, too?

Colton: Trying to just make sure they're OK and just love them.

Brandi: Oh, I love this. Make sure they're OK and to love them, y'all. Well, it takes us to the last thing that we wanted to talk about. We wanted to think about how our Head Start friends and colleagues around the country might take strategies that you found that work for you and put them in the classroom. Given this one again, because I think this one is like a fist - pound exclamation point moment.

Colton: Being loved is very helpful.

Brandi: Being loved is really helpful. And I'm thinking, y'all, what it looks like for us in Head Start could come up a few different ways. I want to humbly say - oh, thank you - that we do this better than anybody else in the whole wide world. In the classroom, we call it individualization. For our grown - up counterparts, we call it tailoring. In whatever ways we come into the discussion, it's about literally meeting folks where they are.

And what I love about love is, you can show it tons of different ways to the littlest ones, to the grown - up counterparts. And what's really cool is that you get to discover what that means for each person. If one of your teachers - Who is one of your favorite teachers at school?

Colton: I don't want to say.

Brandi: You don't want to say. Think about that person, and then think about something she did that made you feel loved.

Colton: She could explain to me why and what's happening.

Brandi: She explained why and what's happening to Colton. She was able to take the time out, which makes me think of that second strategy.

Colton: Being able to take breaks.

Brandi: Take breaks, sound like a big deal. Take breaks in between assignments or take breaks during assignments.

Colton: Yeah, take breaks in assignments.

Brandi: Having an opportunity to move around?

Colton: Yeah, that. 

Brandi: Yeah. What about this one? 

Colton: Being able, talking it out is really useful to get to understand what the people with autism are thinking.

Brandi: Talking out different strategies, or do you remember that time you went to summer camp and you were having kind of a tough time? And do you remember what you said to the -

Colton: I said, "It doesn't mean I need help."

Brandi: This is a really cool strategy, y'all. And I have to say, Dr. El, you taught me something that I will embrace from this day forward. I was talking to Dr. El, gosh, it's not too long ago. And I said we have this struggle sometimes where, when Colton meets a new group of folks - He plays basketball, and that's super cool. And I was saying to her, "I really struggle about whether to tell folks that he's autistic right away or to kind of hold back because sometimes it brings up judgment or stigma or questions or different treatment."

Dr. El taught me, and I feel like a changed person since she really gave me this opportunity to confirm. She said, “Brandi, when you tell Colton's story, you give folks the permission to be his advocate and ally." And I have to say to y'all, I haven't been able to think about it in any kind of different way since then, and I appreciate that. And Colton, actually, I heard folks on the video say as a self - advocate, he was at summer camp, and he was having a tough time once, and he said, "I don't know what to do right now. I'm autistic." And it immediately softened.

I hear Dr. El's words in my mind again. It immediately softened the adults to try to figure out, "Oh, OK." Because he was looking frustrated and like he wasn't following directions and he was acting out a little. And they didn't know what to do and didn't know where it was coming from, I just wanted to humbly submit that there's always a why. There's always a why behind the behavior. And last thing, Colton Boy? 

Colton: Moving around.

Brandi: Moving your body, like, outside?

Colton: Yeah, or inside.

Brandi: Or inside. What's your favorite thing to do outside?

Colton: Run. 

Brandi: Run. Y'all, I wish some of that would rub off on me. I wanted to also submit, for our Head Start colleagues, I know we have many fun things with manipulatives and blocks and many things. The fine motor movement is super important, too. And we have a lot of fidgets at home that help to center, his thinking and his mind. We found those to be super beneficial for all ages, as we've gotten to know groups. But, Colton, I want to thank you. I'm proud of you. Thank you so much for being with us today and for telling your story.

Colton: You're welcome. 

Brandi: I love you, bud.

Colton: Bye - bye, Mom. 

Brandi: Love you.

Jennifer: Thank you, Colton. Thank you, Brandi. Much going through my mind right now. You're getting lots of love in the chat. But I would love to introduce our next guest, who we know as Ricky II. Ricky II is a 16 - year - old high school junior. Am I right, Ricky II, junior?

Ricky II: Actually, it's 17.

Jennifer: 17! Oh, my gosh. OK. Sorry. Thank you for correcting me. Ricky is coming to us with his mom, Dr. El, today, and they are going to share a little bit about what Ricky thinks is most important for us to know.

El: Boom, bang, pow. Well, I absolutely, positively loved that Brandi identified Colton's characteristics as superpowers, because Ricky II is affectionately known as SDYN. And what does SDYN mean?

Ricky II: Super - Duper Young Man.

El: Super - Duper Young Man. And he started out as Super Kid because whenever he would procure a new skill, he would have to work a little harder for it. And I would say, "This is your superpower." He was first Super Kid then -

Ricky II: My name is SDK because SDK - Remember they used to make those web - edit videos? And then, at Virginia Beach, we have Six Flags, SDK's Adventures.

El: SDK. And what's SDK stand for?

Ricky II: Super - Duper Kid.

El: And then you became what?

Ricky II: SDEK. 

El: SDEK. And that was?

Ricky II: Super - Duper Epic Kid.

El: And then he, at 12, he told me he was no longer a kid. He's now a young adult. He's Super - Duper Young Man. With that, Super - Duper Young Man, we have a couple of questions that we want to ask you that we can better understand the world from your perspective as an individual on the spectrum. You ready? 

Ricky II: Yes, I'm ready.

El: Boom, bang, pow. OK. What do you think is important for teachers to know about children on the autism spectrum?

Ricky II: OK. This is very, very important. What a teacher or pretty much any support must know about kids on the autism spectrum is, one, their interests. Because you could be teaching something that is very, very interesting to pretty much all the other kids, but that one student might be thinking, "Well, this not interesting to me."

What interests me. It can either be that something has to do with motion, something like a joke, or a video will interest them. I'll say building bricks or building blocks. You can say this - building blocks. If I say, "Well, I'm an art profession. I don't find building blocks interesting. I think what's interesting to me is having the blocks move or having them in a way that mimics something that I saw before or mimic something that is interesting to me.”

El: Boom. You're saying contextualize something within the child's interest, because sometimes when someone may be looking off, it's not that they don't want to pay attention. It's just that whatever is saying, it's not locking them in.

Ricky II: Exactly. 

El: Boom, bang, pow. That's some good stuff, man. Now, does autism make anything challenging for you?

Ricky II: Yes, it actually does that. That is paying attention or me trying to focus but actually not focusing. Because how distracting. Because the thing with autism is, there'll be distractions all around you because you're interested in things, in lots of things, and that's OK because you're being distracted all around you, that means you are investing in stuff. You're investing in what interests you the most.

El: Right. With that, since that sometimes is challenging for you to focus, I know that there was something that you once did in elementary school to help you focus while you're in class. What was that that you used to take, the sketchbook?

Ricky II: Yeah, it was actually a sketchbook or like a drawing book. And when a teacher is teaching, I usually like to draw, I can pay attention as well as keep myself occupied.

El: Boom, bang, pow. One of the things that I really appreciate about his teachers is, when I go to them and we problem solve together and come up with solutions, we found a way to occupy him based on his interests. He could doodle and draw in his drawing tablet, but his ears were on. Then he's actively engaged in something, and he's able to procure the information that is being given to him by the instructor. Correct? 

Ricky II: Correct.

El: Boom, bang, pow. Now, we talked about some things that are challenging, but what are some of the things that are great about autism. What are the things that you're great at because you're on the spectrum? 

Ricky II: Because the thing that makes you great if I'm on the autism spectrum or not, is the fact that I'm limitless and wherever I come, whatever interests I am, I come up with it, it makes you unstoppable to do it. That means I could be interested in - I mean, I like, I want to major in music, and I want to minor in art, and I like roller coasters. And my disability, me being on autism spectrum, does not stop me at all, no matter what ability you have.

El: OK. You're saying that you want to major in music, and you want to minor in arts, and those were things that Ricky II was very interested in when he was young.

Ricky II: Yes. No matter what age you are, I could be from three months old to, like, 70 years old, I could still have those interests.

El: That's true. And he has had them. Ricky, II, was nonverbal until about 5 years old. But he had a natural inclination for music. What I did, I situated most of his activities in music, which is how I came up with the company KinderJam.

While he may not have been able to communicate with me in words - I have a Southern drawl. I don't know if it's still there, but it used to be very heavy 16 years ago. And I could tell what he was singing or what he was attempting to communicate to me because he would follow my voice intonation. While I am not a singer, I started to then sing everything like wash, wash, wash your hands or anything you needed to know, I would put it in the song for you.

Ricky II: I would listen just for her singing.

El: Yep, you would listen for me singing. And one of the things that I also appreciate about the video is that one of the things that we would often say is just because he wasn't yet able to speak didn't mean he didn't have an opinion. I would seek to find, through his interests, what he was telling me. "My opinion is, I don't like this. My opinion is that I do like this." Now, with the music he now plays multiple instruments. He's a drum major for his high school, the first drum major on the autism spectrum.

Ricky II: Yeah.

El: He has done band camp for, four - this is going on his fourth year there.

Ricky II: Fourth year.

El: And in addition to that, he's an accomplished artist. Those interests - [inaudible] You can. Those interests actually turned into gifts that he's been able to use to move him forward. And, also, when you talk about the social, he wants to share one of his latest drawings. This is the interpretation of - What was the name of that roller coaster that you went on?

Ricky II: Verbolten. 

El: Verbolten.

Ricky II: At Busch Gardens Williamsburg.

El: You need to come back into the camera, bud. There we go. Now, one of the things that I like about this, when we talk about all of those interests tying together, he was interested in music, he was extremely interested in art, and he loves riding what?

Ricky II: Roller coasters.

El: He's a roller-coaster aficionado. We've taken all of those interests and we've rolled them together so -

Ricky II: And combined them into one subject.

El: Boom, bang, pow. What Ricky II wants to do, he wants to create music.

Ricky II: Music for theme parks.

El: There you go. And he draws pictures of roller coasters and his experience because he wants it to be an immersive experience from - 

Ricky II: Be an immersive experience for everyone, they would not have to feel like they're in line for absolutely nothing.

El: Because that's a long time. That's 30 minutes in a queue.

Ricky II: 30 minutes in the queue with nothing to look at, just being - just you being around guests that are sweating. You can smell sunscreen, and no one wants to be there.

El: Right.  That's a solution he came - He's like, "Wait. I'm fidgety, and I don't necessarily like this experience."

Ricky II: Yeah.

El: "How can we make this experience better?"

Ricky II: Because me, personally, I like an experience when I can see stuff, and it's something that makes you very excited. The thing is, when I went to, when I went to Universal Studios, when I rode the VelociCoaster, I was already excited even though I was - Even though I wasn't, like, by a theming park, I was excited because seeing all, like, they're, seeing the roller coaster track going over your head and people going full speed right beside you and such.

El: Right.

Ricky II: Almost like you can touch the track. That's how it excited I was. I was like, "Man, people are going so fast. Man, people are going absolutely everywhere."

El: Right. And then they had pictures and lighting and music, they made it a completely immersive experience. And you liked that. Now, because we have so many wonderful educators and service providers on the call today, how do you believe that teachers and service providers can support young children with autism?

Ricky II: People, even supporters, should support young children with autism by finding something that interests them. Because the first thing that - a person knows on the autism spectrum is what interests me. If nothing interests them, they'll be lurking. They'll be wandering around finding something that will interest them.

I'll say my best advice is, you put on something that matches your hobby. For example, what if they like movement or roller coasters, do something that's like roller coaster related it can interest them or have their desks themed to their interests.

El: Boom, I love it. We actually do this in our life, and I cannot take credit for this. Instead of doing ABA, because I was a stay - at - home Mom when we received our diagnosis or his diagnosis, I went through floor time therapy with a licensed clinical social worker. And one of the tenets of floor time is to teach from the inside out. I learned at a very, very early on in my mothering journey to hone in on his interest and use his interest as a tool to get transferable skills in other areas.

Ricky II: I feel like if you're interested like right now, if you have like your biggest target, your biggest interest, then you'll learn, then you will alert other supporters and other people that will support you to make sure that your interest will happen.

El: Boom, bang, pow.

Ricky II: For example, if I want to be interested in dancing or drum major, you alert me, you actually have to do a lot of research in autism that way. You found Mr. Shapira, and you contacted him. I can have drum major and dances and stuff with a teacher, which he's now my mentor.

El: Boom, bang, pow. That's the other great part about identifying interests, because sometimes it can be challenging to make relationships with peers. However, as he got older because he had these keen interests, he was able to find his village. Other musicians, other people who are interested in drum major, other people who are interested in roller coasters.

Ricky II: Reflecting back to the picture in my room, me standing next to a drum major, with Jarvis, I didn't even know his name. I just approached him saying, "That's a drum major." I want to take a picture of it, and I want to show him with a broom, right?

El: Right.

Ricky II: Believe it or not, I was very, very nervous. I was, like, "This is my first time approaching a drum major. What do I do? Oh, no." And it's crazy. Me being a nervous kid, approaching a drum major, to now for him being my mentor. Believe it or not, it's the same guy.

El: It's the same guy. He's saying he wanted to be a drum major, we went to a game. He had a picture of him doing a drum major move with a broom, a Swiffer. And he wanted us to get through the crowd to get to the drum major. And he showed this drum major from Florida A&M University his picture. And the guy was kind enough to look at the picture, and I was able to make a snapshot of it, which went on Ricky II's wall. Fast - forward two years later when he starts dance lessons, this dance teacher was the drum major, unbeknownst to us. We meet him, and now that's his mentor.

Ricky II: Now he's my mentor.

El: Yeah. We have one last question.

Ricky II: Yes.

El: What helped you when you were young, and the teachers could probably do now to help others?

Ricky II: One thing that will help is to absolutely notice the kids' interests. Because if when a kid finds out that they're not interested in something, they should notice that. Like, "Whoa. What should we do to make the kid's interests into it?" For example - Wait. What's the question again?

El: The question was, what helped you, oh, you know what? Remember, you were telling me about the apples and the math problem?

Ricky II: Yeah. I was saying, for example. Here's what a particular person will hear. One plus one equals two. You know what a person that is on the autism spectrum, or so on, who doesn't get, or someone who is having trouble paying attention? They might hear this.

First of all - one plus one equals two. How do I get that? First, you take the one, and you divide it by two. Then you multiply it by three, and then you times the square root to the power of six, down towards probably triangle and go all the way down to North Dakota and then back to South Dakota and go all way down to Texas and power out - power of nine power squared, and that's how you get your answer.

El: Something that's seemingly simple to others might seem really complex in your brain.

Ricky II: Yes.

El: How might someone make that, bring that to simplify it that it makes sense to you.

Ricky II: Doing it visually.

El: OK.

Ricky II: In this case, like, doing it with apples or doing it with a tool that will make them know, make sure that they see it in person. Like, I'll say, "Oh, I have one apple. I have another apple, equals two apples."

El: Boom, bang, pow. Then it becomes tactile because they feel it.

Ricky II: Yes.

El: It's visual. They see it, and they've made the learning come alive.

Ricky II: It's better, like - People with autism will learn more if they have an image or they can learn on a picture right and just reading it top to bottom. Because to be honest, what reading instructions, you know what I feel like?

El: What does it feel like?

Ricky II: Reading a big giant dictionary with no picture. Reading a big giant diary with no pictures or no photographs. You literally have to picture everything in your brain. That's what I feel like. 

El: That's a lot of work.

Ricky II: Yeah, that's a lot of work.

El: That's a lot of work. Well, that's Ricky II. I love him. I think he's amazing. Are there any questions?

Jennifer: I love it so much. Ricky and Colton, thank you so much. You're getting a lot of love in the chat. I think this is really resonating with folks. And what our goal really was, to help folks understand your brain, how you process things that we can start to talk about different strategies and things that can support children with autism in our next webinar, and you've already started to do that. Explaining things.

I mean, we talk sometimes about the hidden curriculum of early learning environments or social interactions, things that might not be as clear or might be - that other folks who are not autistic might think are simple might not feel simple, and that can be confusing, and that can be frustrating. Colton talked about being able to take breaks and being able to move. We've got lots of strategies that we'll be able to take into our next webinar. Thank you.

We are getting very close to being at time. I do want to ask Brandi and Dr. El just a couple questions, if folks are able to hang on with us for a few more minutes, we also are recording this, you'll be able to watch this on demand. But Brandi and Dr. El, knowing that with our work -  Brandi, you talked about this. Our work in Head Start programs, we're really in a position to engage and partner with families of children with autism.

Maybe often as they're going through an evaluation process or when there are questions or you've maybe observed some characteristics or traits that make you wonder, or for partnering and engaging families whose child might have just received a diagnosis, when we think about meeting families where they're at and the journey, what are some of the most important things, in the few minutes that we have left, kind of what's most top of mind for you? What do you want our Head Start staff to walk away from this webinar knowing about families of young children with autism in order to create that sense of inclusion and belonging?

Brandi: I love this question, Jen. It won't be surprising to know one because of my day job that I'm going to say, engaged meaningfully and intentionally with the families. And I have to say to you all - Colton mentioned a few things. His behavior would not always come across as docile or as a rule - follower.

He had some - As we were practicing earlier today, he said, "Mom, I just remember when I wasn't able to make good choices." And he was reflecting on what it can feel like when you're a kid and you have autism, and you don't know what to do. And the adults around you are feeling frustrated. All of that to say, the connection he made to love is real.

And I would say, please don't forget the grown - up counterparts because, in my experience, it can feel like a really lonely journey. It can feel like a lot of doors closed journey. It can feel like there's a lot of guilt or shame or worry and all of the above and amazing and wonderful and joy. I mean, you've seen.

I just want to acknowledge that the connection that each of you make every day to our families just cannot be articulated in terms of the importance that that might feel to a family who's navigating all of these systems and services and doors open and doors closed. Again, I think in Head Start we do this better than anybody else already. I really feel and believe that we've created such a community and culture of reverence for and with our families.

And I would just encourage that if you know you have a family of a little one who's on the spectrum that maybe you give them a little extra dash or splash of connection, because I can guarantee they won't turn it away.

Jennifer: Yeah. And I've heard you both say not only connection with staff but connections with other families is something that's important. Yeah. Yeah. Thank you, Brandi.

El: And I would also say empathy. Empathy is understanding. And then compassion. Compassion is acting on that understanding. One of the things to consider that we are content knowledge experts. We live in the literature. We live in the practice. We see it every day.

When a parent receives a diagnosis for their child, generally speaking, that's a parent that has been with that child for maybe two years, three years, four years, and in Brandi's case, seven years. That's a parent who's gotten to know that child from their perspective. If you have a child who is medically fragile or has a physical disability, you know immediately that there is something there that needs to be addressed. There is something there that requires special accommodation.

And you know as a parent that there are some differences that you will have in your life than what you envisioned prior to giving birth. However, if you have a child who is neurodivergent, that's information that you don't discover until much later on. You've already formed a relationship with your child. That vision that you had of your life, it's really real to you. You're in the process of making all these visions come true. Then when you receive that diagnosis, time stops because the brain then has to recalibrate. "Wait a minute. All of the dreams and hopes that I had for my child mightn't be?"

And then there's grief that goes with that. Because think about it. Ricky II was Ricky II before he was born. I gave him the identity Ricky II. I named him Ricky II. I knew what his extracurricular activities were going to be. I knew what he was going to grow up to be. I knew when I was going to be able to retire. I knew the type of retirement village he was going to place me in. He was a part of my life's plan. After we received the diagnosis, it took some time for me to then realize that, "Hey, I have this child, and I had one set of hopes and dreams. However, now I've been blessed with a child that's going to require another set of hopes and dreams," and that takes time.

When you have a lot of clinical information, while it is very important for me to know the ins and outs, I'll never be an expert on autism. But I can become an expert on loving an individual with autism, and I've been able to do that because the people in my village became experts on loving me.

With that, I would ask that all service providers take time, especially when you have people when they're young because that's at the beginning of their mothering and fathering journeys, that we are empathetic to the fact that they may not understand all that we understand. This is something that caught them, blindsided them, and you were watching them at the beginning of their journey. You don't know what they're going to become when that parental self - efficacy kicks in five years later. But if you plant that seed of empathy and compassion early on, it's a higher probability that that parent will get to the point where they feel like, "You know what? I think I can do this."

Jennifer: Absolutely. I love that perspective, and it really goes along with and reinforces things that we've talked to other families and other parents and other contacts in the inclusion webinar series. And that's one thing we keep hearing from folks is, "Be patient with us. Give us time. Give us time to process. Give us time to figure out what questions we do have. And then be there to answer those questions in time when we're ready to ask them."

Thank you both so much. You've already given us a great gift of time. But I'm hoping, because I know there was much more that you both had to say that's valuable, maybe we can meet a separate time, make a recording of the - a more full interview and chat between you two that we can make those available to our participants who are logging on and loving all of this.

Thank you to El Brown. Thank you to Brandi Black Thacker. Thank you to Colton. Thank you to Ricky II. Thank you to everybody who joined us today and hung in those few extra minutes. We are grateful for all of your time.

And we can't wait to see you again, folks at home, on Tuesday, August 27th at 3:00 p.m., Eastern, to continue this series on supporting, including and supporting a sense of belonging for children with autism. Thank you and have a great afternoon.