A

Imagine being a kid who understands every word happening around you while the adults talk over you like you're not even there. Imagine not having a reliable way to communicate until you're almost 19 years old. That's part of Jordan Zimmerman's story. And what she has to say will change how you show up in your classroom today. I feel so honored to welcome Jordan to the show. She's an autistic woman who is non speaking and a full time AAC user and she has so much to share from her lived experience. And we talk about why communication is never something a child has to earn and why there are no prerequisites to robust aac. None. This is the kind of conversation that sticks with you. So let's get into it. I'm Tara Phillips and this is the Autism Little Learners Podcast where I share simple neuroaffirming tools to support young autistic children with compassion and confidence. A quick heads up before we get started. Jordan elected to prepare some questions ahead of time, respond to others in real time, and do kind of a mix at times. You'll hear some long pauses between each question and Jordan's answer and I challenge you to resist the urge to fast forward through any wait time and doing that is a skill to being a good communication partner in the classroom. Welcome back to the Autism Little Learners podcast. And you guys, this is probably the most excited I've been for a podcast interview out of the three years that I've done my podcast. Because today I have Jordan Zimmerman in the house with us and I cannot wait for you to hear all of the wisdom, the lived experience, the insights that this incredible young woman has. So without further ado, welcome to the podcast, Jordan. I'm so, so happy to have you.

B

Thanks for having me, Tara.

A

Yes. Okay, so Jordan, if you don't know, is a young woman who is autistic and she's a full time AAC user. She has a documentary out. Her story is incredible in so many ways, especially her grit, her perseverance and everything that she's overcome to become the Jordan, I don't even know how to put into words what I think of you, but if you ever want a glimpse into maybe how your students feel, you have three year old, four year old, five year old students who are autistic, who are non speaking. This is the person that can tell you. And that's what we're going to do today. So I'm happy to have you. And let's just jump right into the first question. Okay, Jordan?

B

Yeah, sounds great.

A

Good. So you've shared how aac and for those of you who maybe are like, what is aac? Augmentative ultrasound, alternative communication. It opened the door to communication for you. So looking back, what do you wish your teachers, educators, therapists, adults around you had understood earlier about supporting AAC users?

B

It's such a good question. I think there are a lot of assumptions at play based on our society and our inferences when a kid or a student cannot reliably communicate and those beliefs become policies and systems of doing things. So I wish some of those ways of thinking were questioned a bit more, starting with a lack of speech, not always meaning a lack of language. I also wish educators had understood and had better understanding today that communication isn't something students have to earn. Too often AAC is treated as a last resort or something people have to prove they have the skills for. What needs to happen though, is consistent access to a communication system which should be individualized for each student and building an AAC rich environment. Because communication is a basic human. Right,

A

Jordan, you said it well. And I'll tell you what I really, really liked about that. An AAC rich environment, right? So it doesn't have to be only the device. Let's say you have. Let's say you're a 4 year old and you have. You somehow have a device at that young, which would be wonderful, right? So let's say you have a device. It doesn't mean that you don't still model language in other ways too. With there's all kinds of ways that we can make our environment AAC rich so that it is modeling language rich. And I also like how you said communication doesn't equal language. I think that's how you said it because all too often people think that if someone is non speaking, it means they're not. I think you say not understanding, right? So just because someone is not speaking verbally using mouth words doesn't mean they're not understanding everything that you're saying. And again, Jordan is a testament to this. Because you said when you were young, people would talk in front of you like you didn't understand, but you did understand.

B

Just to expand on that AAC rich environment a bit, I think it's important to highlight how it's unlikely for that to happen when a student is separated, especially at age 4 or 5, kids talk a lot. And if a student who is non speaking or unable to rely on speech is not hearing those same words both spoken and through aac, the opportunity to expand expressive communication has already decreased

A

really good point. So language rich in, in all kinds of ways, not just visually or through a device, all language. I think that's a really good point and we don't hear it talked about a lot. So thank you for that. Jordan. One thing that I know over the years, being in the field for over 25 years, is that systems that we use for AAC have changed and so sometimes there's confusion over what's the best, you know. So I'm sure you get asked, what device do you use? What's the best device to use, where it really is individual. But you look back and we had systems like the PECS system, Picture Exchange Communication System. There are now more availability of to have robust AAC devices. But can you share your perspective on the differences of those kind of things, like maybe a pexbook, a core board and AAC device? Because those are kind of the three that you see the most now. But what is your perspective on the differences, especially in terms of like access, autonomy, presuming competence? I know that's a lot in one question.

B

Yeah, it's an important one. So thank you. To start, there is a lot of confusion around what the picture exchange communication system even is, so I'll start there as it is sometimes used interchangeably with other things. When I share about PECs, I am referring to a very specific method where a student exchanges a picture of an item for the desired item. It starts with a single picture and then you can slowly add to build sentences. It's really a requesting system and every picture on the book has to be provided, usually by a caregiver or educator. It really isn't designed to help enable expressive communication. Of course it can be helpful for teaching the idea that communication has power, but as I said, it's a requesting system with very little choice and agency. AAC and communication as a whole is supposed to be much more than this. Effective communication is about commenting, asking questions, writing original poems, tutoring friends, disagreeing, joking and telling stories. So the biggest difference between something like PECS and even a core board, in my opinion and robust language based AAC is someone having the autonomy to express their own thoughts, not just responding to what someone asks or only requesting preferred items.

A

Yes, Jordan, Yes. This made me think of our last conversation when you said, okay, I don't have the quote right, but you'll probably be able to get it for me. Something you said to your brother. And so I think about if you had a pecsbook, you would be limited to requesting, right? I want pizza. I want to Go to a football game, if that's even in there. But with your device, you were able to tell your brother that he used to be the center of attention. Right. And now what did you say? Do you remember what you said to him? I'll let you speak for yourself. But it was so great because I was like, that is, you know, badgering a brother a little bit, speaking what's on your mind, having fun, and everybody deserves that.

B

Okay, I don't recall, but maybe it was him telling me that he lives vicariously through me. And I said, well, that's what I did for my first 18 years. So it's his turn now.

A

Yes, yes, that was it exactly. He has to kind of live through you now because you're the one that has a lot to say, and you're doing amazing things, like your advocacy work, which, you know, we're. We're not even going to be able to touch on in this podcast, really. But. Okay, maybe just. I know this is opening a whole can of worms, but Jordan recently has told me a little bit more about her advocacy work in Ohio, and it's. It's something that makes me strive to do better in jumping on that mission with her because it's. It's so important. And can you give maybe just a quick insight into what your advocacy work is about?

B

Sure. So in Ohio, specifically, my advocacy has recently focused on a messaging bill for AAC awareness. If you're not familiar, a messaging bill is really to inform and educate and rally people before taking bigger action to pass laws, in this case around AAC access and mandates.

A

I know when you told me, I was like, it just lit a fire inside. Like, how can we do something like this in Wisconsin? So Jordan said she'd keep in touch and kind of let me know when it reaches the next step. And I would love to, like, challenge everybody out there, if anyone has it in them, to join in this kind of advocacy, reach out. Because I think the more the better, obviously. But, Jordan, I'm just so proud of you for taking it to that next level where you are talking about the legislature, you know, eventually, insurance companies, all of that, to fight for change, for that basic human right of communication. So I just wanted to tell you I'm proud of you. This is amazing. And. Okay, we'll move on to the next kind of portion of the podcast. I wanted to know what you thought the phrase presume competence really means in practice, because we hear it now, and it's one of those phrases. Like, I say, I'll put a Quote about it presume competence but. And people understand, I think basically what it means. But like how do we put that into practice? How do we show up with that every day there. It. It's.

B

Yeah, it definitely means different things to different people. To me it's about believing people can do things, can learn things and can thrive when given the opportunity and access. It's not about everyone doing everything or everyone doing everything in the same way, but it is about creating the environment and offering support without lowering down expectations so everyone has the chance to learn, play and belong. However, that is if we go back to communication for a minute. Presuming competence also means offering robust language access from the beginning instead of limiting vocabulary because a student hasn't demonstrated that competence yet. We don't restrict spoken language to toddlers until they've mastered requesting people surround them with language. So why don't AAC users deserve the same opportunity? This is where I'm not sure people really understand what presume competence means as an action

A

preach girl. I think that I hear this a lot just because I the autism little learners community, people aren't afraid to say like the challenges they're having, the things that they're facing. And a lot of people will say, well in our school they, we have this, you know, they have to meet this and this and this, these prerequisites before they qualify for aac. And so one of the things that I'm doing is trying to spread the word that there are no prerequisites. And I've seen this in action over the years. And Jordan, I think you'll like this story. I had one student once who was three years old and he was, I was new to that three to five year old level. I had been at the elementary for a decade, so I was at the early childhood, so I had a three year old. And it was back when parents getting devices, AAC devices, tablets on their own was a new thing. So they had gotten it through a company and they came in and said, okay, we have this device for him now. And they said someone from the company will come in and provide some training if you guys want. And we're like, yeah, we'd love that. So a few weeks later I think a lot of us had those old myths in our head still, like, oh, you know, I don't know, he's not really using it. Well of course he's not using it. He's not. If you're not modeling and like demonstrating with it, they're not going to just any person is not going to be like, oh, I know exactly how to use this device, right? But a few weeks in, we're sitting there and he was with me and I was doing some activity with him, I can't remember exactly what it was. And he starts tapping around on his device. And I was like, what is he doing? And all of a sudden the whole phrase came out and he tapped the sentence or tapped the window and it said, this is boring. And I was like, oh my gosh, you are so right. I'm so sorry, let's find something else to do. And I think at that moment for, for me is when it really clicked. Some people would dismiss that and say, oh, he just happened to tap on that. But I knew him enough. I knew his personality. Even though he had never spoken a word verbally, I knew his personality enough. I'm like, he meant that. And so I think part of that is presuming competence too. Believing people when they express themselves with an AAC device, don't chalk it up to just stimming or, you know, accidentally hitting something. We need to presume competence. And also, Jordan, what you said about the ability to have access to learn language, not as a result of reaching some hypothetical criteria like, oh, they need to be matching first, they need to be differentiating between vocabulary, they need to sit still, still. These are all ones I've heard. They need to sit still, they need to go through pecs to up to phase, whatever, phase five and then we'll consider a device. Have you heard all of these too, Jordan? And I just think, what if, what if we do it the other way and see what happens? We get them the devices right away.

B

Oh yeah, and all that research has been debunked. In fact, those are common reasons for delayed and denied access. But we have every ethical and research backed argument for why those prerequisites don't work.

A

This is why I feel like it's so important to bring your voice forward and people who have that lived experience, you've experienced what it was like to not have access to and then at 18, I think is when you got access to a robust AAC system. And why on earth would we listen to some outdated old advice about prerequisites that are needed versus someone who has lived it and flourished with an AAC device that is robust and your whole life changed. You know, I don't want to explain it for you because you've told me in your own words how your life has changed and especially when it comes to your relationship with your brother and Your family. Can you tell everyone maybe just one or two things about how having access to communication has changed your life and can change the life of other individuals too, no matter what their age?

B

Yeah, I always say that communication is an access point. It's how we express feelings, say when we are hurt, seek medical care, ask for favorite clothes, and participate in the community. I didn't have the ability to do those things before 18, almost 19 years old. So while it was a slow shift, once I had access to communication, my overall access to others, to learning, and to my community all improved. I was eventually fully included in school, able to go to college and gain amazing relationships. But it shouldn't take 18 years for anyone. Because another thing that's not talked about enough is the trauma that accumulates when someone cannot share their needs and when things happen to us rather than truly with us.

A

Access to others, access to learning, and access to community, those three things are essential in life. And being denied that for any amount of time, like you said, we're hearing is traumatic. And when you think about it, how could it not be to not be able to express medical concerns or, you know, being hurt, not feeling good, all of that, it really, it kind of leads Jordan into my next question. I have two questions left for you. The next one is around behavior. And I think over the decades teaching, I hear a lot from adults that maybe are well meaning, maybe have their own implicit biases. But when we're talking about behavior, I hear a lot of people who still have that lens of, oh, well, they're just trying to manipulate you, they're just trying to get out of doing this or that. And I really feel that that is taking the surface, easy way out. Right. You're not looking deeper, you're not looking into the why, the real why of this behavior and how to remedy it through trust and relationship. Not just, you know, behavior chart or sticker chart, that kind of thing, which is very surface level again. So any thoughts you have on that Candy? Yes. Of candy? Yes. Jordan, here, I'll give you some candy and then. Okay, good. You're not going to bite or hit anymore. Awesome. I mean, come on. So I think this is one of those things that we've talked about a lot more in recent years. How. Yeah, those kind of compliance based methods, they work for a while, they work at a certain level. But look at all these things Jordan's talking about. Do they allow for any of that? I think of behavior being very misunderstood with autistic kids. And so like, from your perspective, how can you reframe behavior. I know you and I have had to talk about behavior is communication. And that's another buzz phrase. And on my end, I feel like the intent behind that is when there's behavior, you need to look at some of these things that people maybe don't have access to being able to communicate. Right. So there's a behavior. It's not typically. Not just, oh, they're manipulating. They're just trying to get out of this or that. It's trying to communicate something like, I don't feel good. I don't like this. I don't want to do this. And that is valid teaching. That we can protest and say no is a huge, huge skill that should be allowed. I'm kind of rambling on here, Jordan, because this is just. I feel like this can be the crux of a lot of things. So many people, the first thing they reach out about is, I have a student who's hitting, I have a student who's biting. And they want an answer like, okay, read this social story and it will be good, or use the star chart. Everything will be okay. But it just goes deeper, and especially when you're thinking of building a positive relationship and connection and trust. So how can we reframe behavior to be thinking about what's best for. For autistic kids?

B

It's such an interesting question, and I know people won't love my answer because it's not a quick fix. As you said, a student may be overwhelmed, confused, anxious, in pain, exhausted from not sleeping well, or lacking a reliable way to communicate. If educators only focus on compliance, they might miss that message. But still, I actually don't think all communication is behavior. And I think that thought of thinking so can be really harmful in schools because it then puts pressure on educators and others supporting students to figure out what's wrong. And sometimes there's nothing. Sometimes it's a dysregulated body or a repetitive motor response, or a kid just being a kid or a teenager just being a teenager. And that person doesn't need solved for that person needs an effective way to share, learn, poke fun, tease, or just be a kid. I don't know. There are just so many reasons kids can be dysregulated. And while some behavior is communication, I'm not sold on all behavior being communication.

A

I totally get that, Jordan, because when you say kid being a kid, I feel like a lot of times in the classrooms that I've been in over the years, especially at the elementary level, when we had kids more Kids were integrated into a general ed classroom. Early childhood seems like a variety and classes are smaller, but in the bigger classrooms I felt like kids with IEPs, especially those who had a pair of with them or near them or in the classroom, even if they were overseeing a couple of kids, their behavior, like they couldn't do anything a typical kid could do with and get away with it because there was always someone there to call it out, you know, stop that, don't do that. And then you have little Johnny over here, neurotypical who's doing way more things for attention or just to be a little stinker. And they're not getting called out because there's not someone watching them like a hawk. So I've seen those moments in the classrooms and I think that's one of the things you're referring to. And being able to give kids the chance to be little stinkers once in a while too, can be a good thing. It's kind of a form of expression.

B

Oh yeah. It reminds me of when I was in college and in the winter when I went outside in a T shirt, I was being unsafe. But when other students did it, they were just being rowdy. College students. Regardless of the age, the expectations for the way people with disabilities behave and attend, especially when needing support, are almost always higher than people without disabilities due to perceptions of worth and readiness.

A

Such a good point. I love that example because I live in the Midwest, so I get it. The number of people here, especially high school boys who wear shorts year round. And if every single person got in trouble for that or called out for it, no one would have voices left to gripe about anything. So it's exactly the point. Whether it's a five year old in a kindergarten class who is getting into mischief or it's a college age student who is going outside without a jacket on or shorts on when it's 10 below zero. There are some things that we don't have to pathologize or make into this big deal. Kind of like Jordan was saying, not everything has to be fixed or even figured out. Right. So I think, I personally think the better that you know a child or an individual, the better you are at teasing that out and letting them be them along with the things that you're supporting them with. So I think it all comes back to relationship and connection and, and when you have that, then you'll be able to see kind of with the things that show themselves. So Jordan, for you. Oh wait, I think you have something else to say on that. I'm going to hold.

B

And if we tie this behavior conversation back into presuming competence, like if educators are really presuming competence, I guess I believe that they don't separate people due to behaviors or make people prove a right to the tools or services that can help lessen some of that dysregulation and enable access and opportunities in the first place.

A

Yeah, I think that's another area that needs a lot of advocacy, is just within schools. It's so different school to school. What philosophy comes from the top down, what supports they provide, no matter what kind of setting kids are in. And so that one is just a really, really tough, tough, hot topic. Supporting educators from all over the country, it's just so vastly different in what their administration expects of them and what they have to do. And sometimes they have to kind of find loopholes to do things and in somewhat of a different way. And I think a lot of times there's tension there just within, within the teacher. So there might be a district that says we use compliance based. They maybe don't say it like that, compliance based methods, but they expect them to do this, this, this. And a classroom looks this way and you can't veer from that. And then they're under this pressure. Otherwise they're not like, quote unquote, doing a good job as a teacher. And so, whoo. That topic, Jordan, that's a huge, huge one. So I know that one of the things that makes me really hopeful is that there are more people wanting to learn about neuroaffirming strategies for working with autistic kids. And part of that is learning from people who have lived it like you lived experience. And what really makes me excited is that at something like my upcoming preschool Autism Summit last year we had 50,000 people sign up for a free ticket. To me, that is hopeful. There's people that are going, I don't really love these ways that we used to do things. I want to change. I want to make that shift, shift my lens in how I look at things. What gives you hope? When you look at educators that are beginning to shift towards more neuro firming and communication supportive approaches, It.

B

What gives me hope are more administrators and educators, broadly speaking, recognizing that they can own the change, meaning they can adapt environments, be knowledgeable around communication supports, advocate within their schools and change their teaching practices so students can thrive as they are. I think having conversations like this one, where even if one person can be impacted can lead to impacting students now and many more down the line. That's what it's all about.

A

That's 100% what it's all about. I think with last year, when you spoke at the Preschool Autism Summit, those were probably the biggest aha moments and takeaways for any of the attendees throughout the entire summit. Because you speak the truth, you are not from your lived experience, but you're not afraid to push back. So if I ask you about behavior as communication, you're not afraid to push back and be like, I get this part of it, but I don't see it all that way. And I think that is so important because for any of us that are out there trying to spread the word, we need to keep a growth mindset too. Where we're learning and we're incorporating what we're learning from people like you, Jordan. People that can say, no, this is what it is like, this is what it felt like. And I think more than anything, evidence based practice or any research, like, this is kind of our Willy Wonka's golden ticket for knowing the best way we can teach and connect with autistic kids. So I thank you. And having this conversation with you today makes me even more excited for the VIP day that we're hosting as an extra add on at the end of the summit. And Jordan's going to be there to have another conversation like this and kind of going deeper. And Jordan, thank you so much for always being that advocate and being willing to share and not being shy about it. You know, we want to know. I think genuinely, a huge number of educators want to know, what can I do better? And you're part of that change. So thank you.

B

Thanks for having me, Tara. And maybe we'll need to look up the Webster definition of communication this summer and really challenge the conversation on whether or not all behavior can be that.

A

Yes. Oh, my gosh, I love some good homework. So I'm going to get on that. Jordan, thank you. Do you care if I add a PS onto a podcast? I've never added like a ps. Okay. PS Last time Jordan and I talked, we started talking about football. And I sent Jordan. I'm a big Green Bay Packer fan. I sent Jordan a cheese head, like, if you see them on tv, the big cheese wedge hat. And she so graciously sent me a picture of herself wearing it. And it's so cute. And tell them what you told me today about your dad, because I just thought it was so, so great.

B

My dad sent a photo of me wearing the cheese head to his friends since he grew up in Chicago. They said they'll allow me to wear it, but I'm not sure. They'd be so accepting if I actually wore it to a game.

A

So good. I love it. Jordan. Oh, my gosh. Thanks for always having such a great sense of humor, too. Thank you. Thank you. And I'll see you next time.