World Autism Awareness Day: What it's like to be Autistic and the tools that has helped to navigate the world

Navigating daily life can be a labyrinth, especially when you see the world through the unique prism of autism. On our latest episode of Real Talk with Tina and Ann, we're joined by Ann herself, who not only lives with autism but is also the mother to three autistic children. She opens up about the silent battles in classrooms and the victories won through self-advocacy, sharing a perspective that's as enlightening as it is deeply personal. As we traverse from the challenges that come with 'masking' to the art of communication—whether it be through spoken words or the profound silence of a non-verbal child—Ann's stories are a testament to the resilience and adaptability of the autistic community.

This is not just another conversation; it's an intimate journey that spotlights the often-overlooked subtleties of autism in social and work settings. Ann provides a candid look at the practicalities of life on the spectrum, from strategically selecting a seat to the complexities of requesting workplace accommodations. The dialogue is rich with strategies for effective communication and living authentically in a world that's learning to embrace neurodiversity. Join us and be part of a discussion that doesn't just celebrate the unique talents of autistic individuals but also arms them—and those around them—with the understanding necessary to help them thrive.

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Transcript

Speaker 1: 0:08

Welcome to Real Talk with Tina and Anne. I am Anne and today's episode is going to be a little different. Because this is World Autism Day, when I'm recording this, and it's Autism Month Autism Month and because I'm autistic and I'm raising three kids with autism. I really have a different perspective and I really wanted to jump on here and do a complete episode on what autism looks like through me and how autism can affect us and the tools that we can build to be able to have a better life living on the spectrum. So I was hoping that you might be able to join us and learn a little bit more about autism. This is going to be a great, amazing episode and for all you autistics out there, or if you know somebody with autism, I just want to say happy World Autism Day and I really hope that you have an amazing month. Okay, well, here is the episode on autism. Since today is World Autism Day, I thought that I would come on and say something.

Speaker 1: 1:13

Since I'm autistic and I have three kids that are autistic, I can tell you what it's like to be autistic and also some tools to help navigate the world, because it took me a really long time to figure it out Decades. What is it like to be autistic? Well, I can tell you that I have had stages in my life, but I can tell you that all those things that make me autistic are still there. It's just that that make me autistic are still there. It's just that, like I said, I have built tools to help me in the world. You know, most of the world does not adjust to you, so you have to figure it out. I can tell you the skills that have helped me navigate the world more than anything else. First of all, I've had to learn to self-advocate. There are many parts to this, because when I was a kid, I was the one in the room that didn't talk at all. I mean, I was very quiet and I never would have told you how I was feeling and what I needed. When I went to school it was a lot different than it is now because you know they developed a lot of things since autism was back in the Stone Age when I was a kid.

Speaker 1: 2:32

But I do remember being in the classroom and there were a couple of things. First of all, I didn't understand how I was the only one in the room that didn't understand what was happening. Everybody else did. I was the only one in the room that didn't understand what was happening. Everybody else did. Everybody seemed for everything to just click and they understood the teacher. They got their books out when they were supposed to. They wrote down things that they were supposed to, but I always seemed to be watching everybody else in the room to know what I was supposed to do and that was really confusing to me and I didn't understand what autism was back then because I was a kid and, like I said, there wasn't that much that we knew about it as much as we do now.

Speaker 1: 3:18

But I do remember being in the classroom and watching the teacher talk and hearing like every third word that she said and most of what she said, because they talked really fast and my processing was very slow, so a lot of what I heard was blah, blah, blah, but I could hear people tapping their pencils. I could hear all the movements in the room. More than I could hear her I didn't room More than I could hear her. I didn't understand the teacher when she called my name. So most of the time I was hoping that she didn't call my name and when she did, I just wanted to put my head down because I didn't want anything to do with answering that question Because most of the time I didn't know the answer and I really didn't even know what she asked. So I was always embarrassed and I always tried really hard to avoid and you know they're going to call on a kid that looks like they're trying to avoid. But one thing I absolutely did was I would look around at everybody and it would look like I'm cheating. And I wasn't cheating, I was just trying to keep up and do what I was supposed to do. I can remember one time when I left the classroom and the teacher said to me she said, ian, wait a second, I want to ask you something. And she said why are you the only one in the class not taking notes? And I said I don't know, and that's because I really didn't know. I couldn't tell her, I didn't have the voice that I do right now to be able to speak eloquently for myself, speak up for myself and really understand what was going on.

Speaker 1: 4:53

You know, masking is probably one of the best skills I think that we innately have. We can act fine when we aren't, we can blend in when we are a mess and I can tell you that I've done that all of my life. We can hold it together in school to the point where my kids are an example of this. I've got three, like I said, with autism, and one in particular holds it together at school and when she gets home she is a screaming mess. She will rock, she will grab her hair, she will just. She's just a mess when she gets home and the teachers will say, well, we didn't see that at school, it's because she finally got home, she held it together all day long. She was masking all day long, which is so exhausting. So by the time she gets home she can't hold it together anymore, nor should she have to. So that's the place. Home is the place where she can just go absolutely nuts, have a meltdown, a shutdown, whatever she needs to do, go be by herself and just not be bothered by anybody. Watch her TV or do her tablet, just be alone sometimes, and that's about all that she can handle. So masking is one of the I'd say one of the biggest things that we do all day long.

Speaker 1: 6:18

Now we teach our kids to advocate for themselves all the time. Let your teacher know when you need a break, let them know when you don't understand. Let them know that you need flexible seating or that you need noise canceling headphones. Let them know that there's too much noise and you just can't focus. Let them know you need extra time to take a test. I mean, if you weren't able to voice that, maybe there's something that you could set up with your adults and help them figure out a way where you can let the adults know that that's what they need. I mean, some people, of course, who are autistic are nonverbal. Who are autistic are nonverbal. So I really think that it's up to the adults in the room the teachers, the staff to be able to know what the child or adult with autism is trying to tell them. The thing about autism is that it doesn't go away just because you become an adult. So whenever I talk about things like this, I'm also talking about adults that have autism as well, of course. I mean it's really interesting how they have so many services for kids, but yet when it gets to adults, they kind of drop off and it's like wait a second, I still have autism.

Speaker 1: 7:46

You know, it took me many years to get to the point where I could self-advocate, for me to be able to get comfortable talking and speaking up for myself took decades. I mean, I've even gotten to the point where I do speaking engagements in front of people and sometimes that can even be easier than talking to people one-on-one. So there's that, and it's that intimacy that one-on-one can actually be harder, and the expectations that are that happen between two people versus, you know, looking out amongst the crowd and being able to talk to them, and it really is a different experience the crowd and being able to talk to them and it really is a different experience. One of the ways that I self-advocate is I decide where I sit, and this is absolutely huge. This can make or break me.

Speaker 1: 8:33

When I'm in a room, I decide where I sit. I go to the meetings early, I scope out the room, I learn who's going to be there, I learn what my expectations are, I watch others and I try to pick my seat before anybody else. I don't allow people on either side of me, because when I have people close to me, that's when I'm not really able to function very well. That's when my brain goes. That's when I have people close to me, that's when I'm not really able to function very well. That's when my brain goes, that's when I'm not really able to hear people, I'm not really able to talk as well as I can, and if you want me to be the best, I need to be in a meeting or in the room for whatever it is. Then I can't have anybody close to me. I will sit clear across the room in order for me to be able to be my best. Or nowadays, there's a lot of meetings are virtual, so I just do the virtual meetings. Instead.

Speaker 1: 9:31

I actually, if I have anyone sitting across from me, that's a big deal too. If I go to a restaurant, I really can't have people sit across from me in a restaurant. Or it's hard for me to also be across from somebody in a really open space because weirdly, I lose my spatial sense and I actually have to hold on to something in order for me to not fall over. It's really strange when I'm pulling from one area to be able to focus, I lose other areas, and that's one of the things I lose when I'm trying to focus on another person across from me. So I have figured out not to sit right across from somebody and sometimes if I have to have somebody close to me and I have to also talk and look and all this other stuff. I just hold on and it really does help ground me. It's really strange, but I've learned that about myself.

Speaker 1: 10:37

I don't think that there's anything wrong with letting people know that you're autistic and these are the things that you myself. I don't think that there's anything wrong with letting people know that you're autistic and these are the things that you need. If someone or a workplace has a problem with what you need, then I think that there are steps to make sure that those accommodations are taken care of for you. As long as you are doing your job, I don't think that there should be anything wrong with you needing some of these accommodations and requesting them. One of the other best ways to self-advocate is to know yourself. I learned that young, because I was not able to say everything I needed to. I was not able to let people know really what was going on inside of me. So this is so strange what I would do, but I wasn't going to be coming out of my mouth, not in a way that I wanted it to. But I learned that I could write it down the way I wanted it to. So that's what I did so.

Speaker 1: 11:52

I think sometimes that we just have to get past the embarrassment of being different and what we need to do in order to be a part of society. I remember one time I was at a coffee shop in LA and this barista asked me what I wanted. And I told her what I wanted and she said excuse me. And I said again what I wanted and she said are you talking to me? Because you sure aren't looking at me. And I didn't even say to her look, I'm autistic and I really have a difficult time looking at people at the same time that I'm talking. If we want to have a conversation, I'm really not going to be able to look at you, and that's what I needed to say. But even then, you know, I wasn't able to tell her that, but I just thought, wow, you know she's being more rude than I am by not looking at her. So we have to teach sales and anyone in the service industries to deal with all kinds of people.

Speaker 1: 13:01

I mean, invisible disabilities is a real thing and some of the hardest ones, some of the hardest people to accommodate, are people with invisible disabilities, because we don't see them and we don't know what they want. We don't know what they need and so most of the time they don't look as if there's anything different. And an example is my son who has autism and he is you know, he really struggles a great deal and he looks pretty typical and out there on that recess man, he doesn't know how to navigate the world yet he's only 10. And people are pretty mean, they bully him and he'll have the same conversation 10 times to 10 different people, you know. And he just wants to throw a ball around, he wants to play, but he doesn't really understand all the rules and they really give him a hard time.

Speaker 1: 14:09

So having invisible disabilities is a thing, and you should always be aware that the person in front of you might not be able to understand you or might not be able to look at you. You know, everybody's doing their best and I can't stand when people say look at me when you talk to me, because if I do, I'm not going to be able to hear you and I'm not going to be able to say all the things that I need to if I'm looking at you. So do you really want to have a conversation with me? Do you really want to know what's going on inside of me and do you really want me to hear you? Then don't make me look at you. You know, when it comes to myself, I've worked really hard on how to be comfortable and I have figured out how to be a chameleon when I join other people's groups.

Speaker 1: 15:09

But when I walk into a place where I have not been before, it throws me. I normally only go to places that I'm familiar and I never go to any place by myself that I don't know everything about it. When I need something at a store, I'm going to go to the same store and I'm going to go to the same place in the store to get what I need. If you have me go into a place that's overwhelming or that the layout is crowded or the layout doesn't make sense, I'm just going to leave. So if there's a place that you really want to go to, I recommend going with somebody first, maybe the second time, the third time, the tenth time, and then when you get to the point where you can go by yourself and know the place better, then you're able to navigate it yourself. But that's what I do. I mean, I go several times before I can actually start going someplace by myself.

Speaker 1: 16:10

Some people say if you can't handle loud, then how can you go to a loud concert? It's really weird. The spectrum is so, you know. When it comes to noise, for one thing, we can tolerate our own noises better than we can tolerate other people's noises, and we can tolerate some noises but not others. I mean, like I can handle a rock concert with music that I love. I cannot handle Enya. You put Enya on and I am going to have an autism meltdown. So it just depends on what goes for us and what doesn't within our autistic self. There's no rhyme or reason to it. So, trying to make sense of it, you just can't. And also, we've taken our kids to a rock concert, who are on spectrum, and some are okay, some are not.

Speaker 1: 17:11

My one son, he, can't handle noise at all. So we take the noise canceling headphones and he was actually in a school of rock and he was doing great, but the noise was what kept him out. I mean, every single time he ended up on my lap because it was just too loud. So the noise canceling headphones and things like that really help him. Another thing that's really hard for me is how fast things move. You know it takes me a long time to process and the world goes much faster than I can handle, like what I talked about in school for me. The more I want the world to slow down for me, the more I want the world to slow down for me, you know, the more I'm trying to catch up. They've already moved on to like the fifth step and I'm still on the first step. It can be really frustrating, so I always try to ask people to go the speed of the slowest processor in the room.

Speaker 1: 18:10

It's easy to take advantage of us because you know, another thing is and this is a little bit more sensitive but you know it's easy to take advantage of us because I can tell you for myself when someone hurts me, my voice goes. People who want to bully or hurt somebody on the spectrum, because they know that they can hurt you. They know that you're not going to tell, so the chances of them not telling you know, so the chances of somebody on the spectrum not telling could be pretty good. So I have found myself in some pretty abusive situations because I could not find my way out. I finally found someone to help me find my way out and help me find my voice. So that's what I do is I recommend that you find somebody to help you find your voice in order for you to get out of a situation. Find somebody that you trust. Find somebody that your mouth does work with, because sometimes our mouths, our voice, works in some situations and not others. Sometimes our voice works with some people but not others. I actually was considered like selective mutism for a while, because I could talk in some situations and not others, into some people and not others. So, you know, maybe find your safe person and tell them that something's happening to you that's not okay, in order for you to be able to find your voice and get out.

Speaker 1: 19:50

You know there are so many pieces, parts to being on the spectrum, but it's a beautiful thing and I like me just the way I am. I think seeing the world through autistic eyes brings a special level of beauty to the world. You know we wouldn't have most of the technology that we have without autism. A lot of actors have autism we wouldn't have the rockets that we have, the mathematical and science equations. You know I have a special way of writing and creating and doing my photography. I call it spectrum photography. I have a special way to write it because you know I've written books.

Speaker 1: 20:26

My son is so good at nonfiction it's seven years old. You know he wants nothing to do with fiction and doesn't like to write because he only writes what he knows. So I became a journalist. For that reason I was able to write the things I knew about. But I'm not really good at going outside of that to go into fiction. But I'm an amazing nonfiction writer and have won many awards because of it. So that's the thing when it comes to autism Find the skills you are good at and hone in on them and fine-tune them and become your best self.

Speaker 1: 21:00

We all on the spectrum have skills that we can grow and develop and become our best selves. I have had the opportunity to meet and talk with Temple Grandin and she's a huge advocate on getting people with autism out there and getting them to figure it out. We need to figure out what our skills are and grow from there. We can all do something that we love. We all have a passion. I mean, don't they say autistics have their passions and that we stick to it? So that can be a little funny, but it's true and we can combine our passions with our skills and make something out of it. I know that every autistic can be the hardest, most reliable worker because we show up and we never miss work and we will be on time. We will work the hardest and we can work until it's done and we will be a perfectionist. We will do everything it takes to be our best. We can think outside of the box because we can see things in pictures and I can follow a diagram in my head and see if this happens, then this happens and this happens way before something happens. So I mean there's a lot of pluses to hiring somebody on the spectrum. Temple Grandin proved that this can happen when she got into the minds of cows and saw what they needed in order for them to be led to be slaughtered in the least stressful environment. That was her passion and she turned it into a career.

Speaker 1: 22:33

Having the autism diagnosis does not have to be a bad thing. I know that when a parent hears that, it makes your stomach sink a little bit because you didn't want that for your child. It might be a harder life at times, but we figure it out and letting us figure it out helps us to be our best self. I have seen people, even non-verbal autistic individuals, really have a lot to add to best self. I have seen people even nonverbal autistic individuals really have a lot to add to the conversation. They have figured out different ways to communicate. They can see a math equation in ways typicals can't. They can do so much and we just need to help them tap in and figure out how to help them get it out. Well, that's all for now. I just want to say happy World Autism Day and from one autistic to all the autistics out there, I hope you have a fantastic day.