Ep. 8: Autism Awareness & Acceptance Month

Have you heard the term “pick your battles?” It’s not just a quip! Used thoughtfully and systematically, it can be an amazing tool in your behavioral toolbelt! It helps reduce power struggles, preserves energy (yours and theirs), prioritizes safety and core values, and creates opportunities for positive choices.

Join us as we discuss this and other ways to alleviate the power struggles with my friend and colleague Alicia Like, M.Ed., BCBA.

📝Takeaways :

1. 🧩 April is Autism Awareness & Acceptance Month so things like puzzle piece symbols are front and center.
2. The puzzle piece was historically associated with the idea that individuals with autism were "missing" a piece or were incomplete and was created without autistic input.
3. ♾️ The infinity symbol represents the idea of infinite possibilities, reflecting the diversity of experiences within the autism spectrum. It emphasizes acceptance, understanding, and the celebration of neurodiversity. It was created by autistic individuals.
4. Many people still embrace the puzzle piece and feel it is a fitting representation, but many people have chosen to use the infinity symbol instead.
5. 💲There is a “dark side” of autism that is rarely talked about, in that individuals with severe autism have significant barriers, intensive needs that cause financial strain.‌

💎Today’s GEM: How do you choose to celebrate April in terms of Autism   Awareness and Acceptance? Sound off in The Misfit Facebook Group!

Join the Facebook group for collaboration and freebies: The Misfit Behaviorists

😍 More, you say? We’re here for you!

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👋 Find us!

• Audra | ABA in School
• Caitlin | Beltran’s Behavior Basics
• Sami | B.A.S.S.

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Transcript

Caitlin: the larger conversation is do the symbols matter? Like how much stock are we putting into symbols? Is it just a symbol? Is it more than that? 

Welcome to the Misfit Behaviorist Podcast. Join your hosts, Audra Jensen and Caitlin Beltran, here to bring you evidence based strategies with a student centered focus. Listen weekly for practical and functional advice, along with actionable tips tailored for ABA professionals, special education teachers, and anyone dedicated to supporting students with diverse needs. Ready? Let's get started. 

Caitlin: Hey, everybody. Welcome back to the Misfit Behaviors podcast. So in honor of April, we thought we would chat a little bit about April being Autism Awareness Acceptance Month.

And the first thing I wanted to talk about was the origin of Autism. The puzzle piece, which used to when I started out in the field, everyone had the puzzle piece on their bumper. Everyone had the puzzle piece pin. And it was seen as like the representation of autism. If you were doing like a charity run or something, it was identifying, we support this cause or organization who's funding autism, anything related to research and, movement in the fields, but what a lot of people don't know, and I wanted to just bring it up because I have seen some different symbols and a lot of, I think nowadays the puzzle piece is much less popular than it used to be.

And so I just wanted to dive into the history for a minute, as a lot of people don't know where it came from. And I want to preface this by saying we totally respect everyone's opinions. I think this is just conversational. We're sharing information. And leave it at that. So I pulled up this little thing and it says The origins of the puzzle piece, the primary symbol for autism, it goes back all the way to 1963.

It was created by Gerald Gasson, a parent and board member for the National Autistic Society in London. The board believed autistic people suffered from a puzzling condition and they adopted this logo because it didn't look like any other image used for charitable or commercial activities. And included with the puzzle piece was an image of a weeping child, and the weeping child was meant to be a reminder that autistic people suffer from their condition.

So I think it's important, and if you do that quick Google search, you'll see, the original puzzle piece logo did include that figure of a weeping child. Audra, is that something you knew of how that symbol came to be when you first saw it back in the day? Okay.

Audra: I knew that it came from the idea of the puzzle idea. I did not know about the weeping child piece because they must have gotten rid of that a long time ago.

Caitlin: I think so. I think so. And I'm sure it evolved over time. so I guess the thought being that over time, more recently, there's been a lot of pushback saying, the puzzle piece was initially associated with the idea that people with autism were missing something or were incomplete. There's also the thought that, nobody who actually had autism was involved in saying, Hey, this is the logo that we want to adopt to be the face of our, front or something like that. And it does perpetuate, as a lot of people think that there's like a problem to solve narrative.

And not to say there is or there isn't, but just that's the idea when you see this, that like it's a puzzle. It has to be fixed. There needs, maybe there needs to be a cure, is what could come to mind. So recently, a lot of people have been embracing the idea of, I've seen the infinity symbol a lot, which I love, and taken to mean it represents the infinite possibility, reflects diverse experiences, it emphasizes acceptance and celebration of neurodiversity. Audra, what do you think about the infinity symbol?

Audra: I love it. I think it's great. I love the term neurodiversity. I love the idea of, different ways of thinking, different brain plasticity, coming at different ideas. I love the, the idea of infinity. My, my own son loves math so that it's a math symbol. I've always been very keen on that. So yeah, I like it.

Caitlin: Yeah, and I also the fact that it was chosen by autistic individuals. It has a more positive representation. Like you said, a lot of times I've seen it with that rainbow logo. So it's more, emphasizes that acceptance and positivity more. So I did pull up kind of two sides of the coin and I thought, it would be interesting just to see, because I think most people are, and the larger conversation is do the symbols matter?

Like how much stock are we putting into symbols? Is it just a symbol? Is it more than that? And I think a lot of people are perfectly willing to change the symbols as they come into fashion and other people do feel really strongly about it. So this one quote I found says, while the original intent of the puzzle piece was positive, it no longer represents the goals of advocacy. Yesterday autism was a mystery. Today, while efforts continue, the main focus is on applying what we've learned to make society more responsive to changes. Highlighting this shift warrants a newer symbol, one of cooperation and sharing. And that's from Michael Leventhal. Now the flip side of this, here's a parent, Carrie Bowers, and she writes, and this is just, both of these are just taken as quotations meant to represent different narratives.

And she writes, the political correctness of many things is disturbing. It's hard to keep up, actually, as the term flips. First, as is first person language. When Taylor was young, I called him an autistic child. Then that became a bad thing. Now it's flipped back from a person with autism to an autistic person, just where I started.

A puzzle piece implies a mystery to be solved. Is that untrue in autism? Is that really hurtful or did we make that up to feel better? I believe my son is a mystery still after almost 26 years and he's missing certain understandings, skills, and abilities as an autistic person. He would tell you as he told a group of volunteers yesterday, I just don't get certain things. Is it insulting to imply through imagery a particular truth about him? So Audra, as the mom of an autistic individual, how does that impact you?

Audra: It's interesting. I actually, I had a conversation with him the other day. He is 27, and I don't know if it was you I was talking to or how this came up, but the word cure came up because it's come up, off and on over the years. And I asked him, I actually pulled up the text here a second ago. I said, if there was a cure for autism, would you want it?

What are your thoughts? And this is what he said. He said, honestly, I don't know. It makes me unique and I'd lose many of my strengths as well as my weaknesses. Now this is somebody who has had a lot of struggles over his 27 years, lots of depression, anxiety, and even he sees autism asit makes him who he is.

He's very much embraces it as part of, the good and the bad and a part of who he is, he embraces it. Everything changes over, all these years that we've been a part of this. And like the woman was saying, I remember back autistic was the wrong word and then became person first language.

Now we're back to identity first. It's all fine with me. Whether you want to use. I've talked to him also about, the puzzle piece or the infinity piece, whether he likes person first or identity first. And he's always I don't care. He's he always says, I don't care. And I put, I pressed him once.

I said, if you really had to choose, would you choose identity? And I explained what it was identity first or person first. And he said, I guess if I had to choose, I'd say, I'm a person with autism. It's okay. And he said, I really wouldn't care one way or the other. So I'm like, don't choose whatever you want. And he's I don't care. I'm like, great.

Caitlin: And that goes to show you, too. It's easy sometimes to fall into that polarizing lens that I think social media tends to emphasize where, the community must have 1 opinion of everyone. And that just simply is never true, but it's definitely an easy trap to fall into for sure. I also wanted to mention, and we were chatting before we started, we both follow the Autism Cafe, Eileen Lamb on Instagram, and she posts phenomenal content about her son following his journey, which I think leads me to the next topic we wanted to talk about is just, I don't know what else to call it except maybe that dark side of autism, like the side of autism that you're not seeing on TikTok, that you're not always seeing on Love on the Spectrum. There's so many wonderful qualities and there's so much to, so much joy and learning and being around a person with autism.

And then there's the other side where, there's huge communication barriers. Sometimes there's really intensive needs. There's really aggressive and self injurious behaviors. Not all the time. I'm not saying these are prevalent with every person with autism. You've met someone with autism.

You've met one person with autism, we know, but I've worked, with families, with individuals, with really aggressive behaviors going on, and it's been so hard for them financially, mentally, and we were just both complimenting her again. It's Eileen Lamb, The Autism Cafe. She really just shines a spotlight on the services that are still needed and the journey that's still going.

So many families are going through. And I think that's important because that population of autistic individuals, they can't speak up about this. Like they can't comment on the puzzle piece. They can't, they don't have the communication tools to do so. I find her account really informative and inspirational. 

Audra: I've also had families, that have lost family members to suicide, have lost family members to seizures, to drownings, families who have family members who can't, like you said, advocate for themselves. I had a young man who had severe diabetes, nonverbal, who had pica, like Charlie does, and would get into his medications and had no ability to control his eating, was extremely dangerous with his medications.

Who speaks for them? We have a community who wants to speak for everybody, but who speaks for those children? And it's I love this. I'm very excited. I don't remember when it comes out, but the documentary that's coming out about Charlie is like, who speaks for Charlie? And it's who speaks for those students?

Caitlin: And I think we both feel having been in the field a little while now that how different it is, which is amazing in so many ways. But,tick tock wasn't a thing like, when I first started.So it's, you worry sometimes, and I, again, I feel like I'm dating myself and I sound like the old oldest person in the world, but you worry that the kids are learning this information from these sources, from watching shows and like seeing content on social media.

And that's why I'm really glad there's content out there like hers, where not to say that's, she has to do it or she should have to do it. But that really shows all sides. Like we said, it's a multifaceted thing. It's not just, this is a one size fits all. It can look like this. It can look like this.

It can be really positive sometimes. It can really be not positive sometimes and sharing that impact on families. Otherwise that, that's how change happens, right? We want to see that movement for more and more services, which is so important.

Audra: I was just saying, I think she was somebody who's advocating for, maybe a third diagnosis or second diagnosis needs to come out as severe diagnosis or severe autism diagnosis or something. I just, I, the autism diagnosis itself has three levels, level one, two, and three.

I just, I almost think we need to really use that a lot more. when we're talking about autism, what are we talking about?My son has level one. He's able to live independently and he can advocate for himself. He can communicate. A Charlie or some of these nonverbal students who, they're level three, they have significant behaviors.

Those students need somebody to advocate for them, and there we have twos who are in the middle, using that language to communicate where we are. We're talking about very different needs when we're talking about a level one, level two, level three, very different. And maybe we need to use that language a lot more.

And when we're discussing different students that we're working with, different students we have in the community, and maybe we need to use that language more when we talk about it. 

Caitlin: Yeah, for sure. I think that's a great point because we have the level system, but I agree. We don't hear it being talked about as much, or at least not in my conversation. So it's something that hopefully, maybe we will hear more about and not that you want to reduce anyone to a label. That's not the intention, but just to say that, just so you are clear, this is level 1 versus level 3 to highlight the need for the support that individual might need. I guess in closing, just I would love to hear everyone's thoughts. I know autism awareness, autism acceptance, April's a huge month for, we decorate the hallways, we light it up blue, that could be a whole nother topic. Some people don't like lighting it up blue. Some people feel that autism speaks can be controversial.

Yes, I've seen wear red instead. So I'm, I love hearing all the opinions. I think change is, almost always a good thing. And it doesn't have to be something that a hundred percent of every people feel on board with, but I just like seeing all the different perspectives and all the different thought that's going into it.

I personally do love the infinity logo. I think it's so warm and accepting. And I feel like if I'm part of any committees or something, I'm trying to steer us in that direction. So I would really love if people want to sound off in the Facebook group, the Misfit Behaviorist podcast, or on Instagram, what your schools are doing, what your communities are doing for April this year.

Audra: I love that idea as well.

Caitlin: All right, I think that's it for this week. Definitely reach out if you have a topic you would love to hear about or comment on something that you want to hear more about in the future.

Audra: All right. We'll see you guys all next week.

Caitlin: Thanks, see you next week. 

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