ATU311 – Part 2: Insiders Guide to Autism with Kat Muir

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Your weekly dose of information that keeps you up to date on the latest developments in the field of technology designed to assist people with disabilities and special needs.

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Kat Muir, Speech Language Pathologist
kmuir@eastersealscrossroads.org
www.EastersealsCrossroads.org
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KAT MUIR:  Hi, I’m Kat Muir, a speech language pathologist at Easter Seals Crossroads in Indiana, and this is your Assistance Technology Update.

WADE WINGLER:  Hi, this is Wade Wingler with the INDATA Project at Easter Seals crossroads in Indiana with your Assistive Technology Update, a weekly dose of information that keeps you up-to-date on the latest developments in the field of technology designed to assist people with disabilities and special needs.

Welcome to episode number 311 of assistive technology update. It’s scheduled to be released on May 12, 2016.

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Today we are going to have part two of our insiders guide to autism with speech and language pathologist Kat Muir. We spent a lot of time last week talking about her background and symptoms related to her autism, and that included things like hyperlexia, the fascination with numbers and their shapes and letters; and also synesthesia, the cross wiring of the senses where numbers and shapes have colors and textures; now we are going to pick up with the question about does she disclose to people for whom she is providing speech pathology services that she also is on the autism spectrum.

Before we jump into that, we invite you to check out our website at www.eastersealstech.com, sent us a note on Twitter at INDATA Project, or give us a call, leave us a question, give us feedback on our listener line at 317-721-7124.

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WADE WINGLER:  And you do work with a number of young people with autism?

KAT MUIR:  I do.

WADE WINGLER:  Do you talk about your autism with them?

KAT MUIR:  It depends. With some families, especially those who have younger children who don’t communicate using speech, who are experiencing different challenges, I usually don’t because it’s not anything that’s going to be helpful to that family. It’s not things that they can relate to. But to families who have older children, who have goals on the spectrum, who have children who are having difficulty socially engaging, that’s the time I often do discuss it with them. I have conversations with them about whether they want to share it with others they know or how they feel about it within themselves.

WADE WINGLER:  We talked about some of the early symptoms, and we mentioned in passing that there was a non-diagnosis. I know that finding out that autism is what you’re dealing with took some time and a couple of different evaluations. Can you tell me about those two evaluations and how it went and the time difference between them?

KAT MUIR:  When I was three or four, I was taken, I think it was a neurologist or psychologist, to look at me and see if there was anything that they could figure out. After looking at me for an hour, they said, “She’s so smart. She can recite all the stories. She is beginning to read. She just kind of plays quietly and lines up the toys.” Those are things now that just a combination of things, we would’ve left with a diagnosis today. But this would’ve been around 1991 when there was in the understanding of autism as a spectrum that there is today.

My parents decided, “Well, I guess this is just what her version of normal looks like, so we are going to run with it.” It wasn’t until I got to grad school that I finally had to revisit why I wasn’t able to connect with people around me. I was able to speak and sort of engage in conversation, albeit a bit competitively, but every time I went to a new school or place, I thought this is the time that is going to work out. I’m going to make friends. I’m going to do what people my age are supposed to do. And it never happened. I asked my mom one day, “What should I do?”  She put me in touch with counseling and psychological services at my university. I went in, and during my first visit I was diagnosed with obsessive compulsive disorder and depression and bulimia nervosa. I started receiving cognitive behavioral therapy to address those concerns. I thought, “Okay, this is going to bring everything together and it’s all going to be okay after this.” But it wasn’t. That got rid of some of the layers of repetitive behavior. I would spend hours a day checking things to make sure doors were closed or things were positioned correctly. I would always do things in sets of four, so that slowed me down every day. Some of those things were out of the way, but it still didn’t solve my difficulty interacting with other people. I never knew what to say to them. I wouldn’t understand how to respond to what they said to me. If I was in a group of people and there was a conversation on my left or a conversation on my right, how do I know which one I’m supposed to be in?

It was at that point that my psychologist suggested that there was maybe more going on and that led to the diagnosis of Asperger’s syndrome.

WADE WINGLER:  Why did it take so long to find out that this was autism?

KAT MUIR:  Again, I think it was because I so did not fit the image of what autism is supposed to look like. In some ways I really fitted in all the ways that count, but in all the superficial ways, my gender, my age, my performance in school, I wasn’t causing problems in any setting, so no one saw it as a problem even though internally I was in a constant state of confusion because I was so close to being able to coexist with other people and interact and be part of the community, but not quite.

WADE WINGLER:  I know that you care about your parents a lot, and I know you shared some of their perspectives when you gave this talk. What do your folks say about you when it comes to autism and those things?

KAT MUIR:  My dad is a big proponent of pushing kids just enough. Kids, especially on the spectrum, have a hard time knowing what they can achieve unless they are given an idea of what that can look like. He would always encourage me to try new things that I would’ve never thought to try. He brought me an origami book and origami paper, and I just let loose with it. It was a really good fit because I am so interested in shapes and patterns and order that it just really made sense to me. I’ve used that and a lot of my sessions with my kids so that they can work on understanding sequencing and how to describe steps that need to be completed. I’m kind of paying it forward a little bit. He would always want me to try things that were just a little beyond where I was, so it was a challenge, but it was a challenge that was attainable.

WADE WINGLER:  I’m from Indiana. I’m going to try to say this correctly. How about your “mum”?

KAT MUIR:  I asked my mom a couple of days before I gave my presentation what she would say to a parent who was receiving a new diagnosis and what the journey was going to be like. She said, “It’s a bit like being one of those screaming people on a roller coaster with their arms in the air. It’s kind of scary and you don’t know what’s coming next, but it’s really fun.”

WADE WINGLER:  That’s great. In your presentation you had a list of life hacks and a list of apps. I’m going to go through those one by one and talk about them. The first one that you had listed was drama club. Tell me about that.

KAT MUIR:  I loved drama club. I would always try out for the plays at school. I love that it would put you in the situation of interacting with someone, but all the hard work was done for you. You just have to memorize the lines. They gave you what to say. They told you what to do with your face and body and where to stand. It was going through the motions of a conversation without feeling like I was struggling and floundering to keep it going.

WADE WINGLER:  That’s pretty fascinating. Similarly you talk about mystery shopping. It too mystery shopping was something I took up in grad school as part of what my psychologist referred to as social homework. Instead of being assigned reading, my big homework assignments were going out and talking to people. I wanted to earn a little extra cash, so I signed up to do mystery shopping. On the website, they give you a set of instructions, and they tell you where to go, and you have a scenario interacting with people who work at the store, the location. You have to be you have to pretend you are there for a certain purpose even though you are really evaluating how the person interacts with you. Not only was I paying attention to this person’s nonverbal communication, whether they were being friendly, whether they offered me a cart or basket, but I also had to pretend that I was doing something I wasn’t. That kind of deception was challenging. Most people do that kind of thing all the time. If a guy is trying to get your number and you don’t want to give it to him, you might say, “Sorry, my phone got disconnected. I don’t do that.

WADE WINGLER:  You have a term here that you call activity driven socialization. Was that about?

KAT MUIR:  That’s the best way I can think to describe how I’ve developed a strategy to socialize with others. It’s hard for most people to make friends at the school, so what I’ve tried to do is put myself in situations where the focus is on the activity, not on the socialization. Going back to my aerial silks class, I’m in this setting where I’m with the same people every week, and they are all doing the same activity together so we have a topic already there. I can’t interact with them as much as I feel like that day. If I don’t interact with them as much, it’s not a big deal because we still got the class to do. If I do feel like interacting, then I’ve got a topic already. These are people going to know, so I can ask them, “How did your date go last week?  You told me you’re going out.” Taking some of the pressure off the socialization piece and not making it just a social free-for-all. That really helps a lot.

WADE WINGLER:  I’m starting to see a pattern emerged that I want to call social scaffolding. Do you think that’s a fair way to characterize some of these activities?

KAT MUIR:  That’s a great way to describe it.

WADE WINGLER:  There’s some structure there. You still have some freedom to move around within it but otherwise the structure is there to keep the social situation moving forward.

KAT MUIR:  Yes. You don’t just get lost.

WADE WINGLER:  Manicure?

KAT MUIR:  Yes. I am not a big girly girl. My parents can attest to that. Several years ago I started having my nails manicured. The reason for that has nothing to do with how it looks, even though it does look pretty cool. I hate the feeling of the little unevenness of regular nails. They’ll always snag on your clothing or on something. It drives me crazy and I can’t focus. This makes that problem go completely away.

WADE WINGLER:  It’s a great way to spend extra time and money, right?

KAT MUIR:  Yes.

WADE WINGLER:  My wife would agree. She’ll go with you anytime to get manicures. The next one on your list is movie with subtitles and voiceover.

KAT MUIR:  I got Netflix not too long ago and I’m so glad I did. I’m not a big fan of live-action shows or movies or anything that has a scripted storyline because it’s hard for me to tell people apart sometimes. It’s hard for me to see or understand why people are doing what they are doing. Subtitles can put the dialogue on the screen. Instead of looking at their mouths to help me take in the words, I just got that there and I can focus on other things that are going on. The voiceover that is usually, as I understand it, meant for people who are blind or have low vision, I use it to help me understand what’s happening nonverbally what’s important. Ill tell me this character entered, so now I know who that person is and I know it’s important that they came in. Or they’ll tell me how someone is standing or what their facial expression is. Even though I can see it with my eyes what they’re doing, it doesn’t have meaning. I’m just not processing it. But having someone tell me what to look for, then I can actually enjoy it and follow the plot.

WADE WINGLER:  I never thought of it that way but that makes sense. When videos are being described, they have a limited amount of time to talk about what’s happening visually so they have to prioritize. They will only call out just the most important and relevant things. That’s brilliant.

The last thing you had on your list of life hacks was “seriously” awareness. What do you mean?

KAT MUIR:  Awareness, not just for people outside the autism community but for people on the spectrum as well. Before I was diagnosed, I spent so much of my time trying to be normal. I thought if I have the right words to say, I’ll be normal. If I had siblings, I’d be normal. If I were thin enough, I’d be normal. None of those things solve the problem. It was once I had a diagnosis and I knew why I was the way I was, then I can work on it. I could use when I was good at. I could work on what I was not so good at. It was just less pressure on me. It was okay to be who I was.

WADE WINGLER:  One of the next things we have is a list of apps. Can we run through those?

KAT MUIR:  Yes.

WADE WINGLER:  One of the first one you talk about was “Sosh”.

KAT MUIR:  I used this one a lot with my other kids. It’s almost like an external social processor. We don’t have the social filter or social processor equipped in our brains, so having one in your iPad is almost as good. It has a seemingly endless list of functions. I haven’t seen all of them yet. It’s about $40 and is worth every penny. You can catalog people you know with interests they have so that the next time you see them, you can remember to ask them about those interests. You can plan out questions to ask. You can catalog slang terms you here. You can gauge your emotion on a visual scale almost like a temperature gauge. There are so many pieces to it that there’s something in there for pretty much everybody on the spectrum. I would really recommend it.

WADE WINGLER:  The next one you had is Communication Builder.

KAT MUIR:  Communication builder is another one I use a lot. It is a structured conversation app. You get a topic and a picture and you choose what you want to say to that person. Then they say something back and you take another turn. Each turn you take, you record your voice so at the end you will get to hear yourself having a conversation with someone else, which is really rewarding to be able to hear yourself participating like that. It’s like looking on someone else but it’s you. You get a feel for what the timing should be, how long should you wait before you start to talk after someone else talks. It gives you an idea of what your choices are, what are things you could say in response to this.

WADE WINGLER:  The next one you had was Let’s Learn Emotions Pro.

KAT MUIR:  This is one I have used myself. It helps more with emotions then I think a lot of the apps out there. Most of them use cartoon faces, which are fine, but the main reason I prefer watching cartoons to watching live-action is because the emotions are very easy to read. It’s more clear-cut. On a real person’s face, it’s harder to see those emotional cues. It’s less exaggerated. It really helps to get that practice looking at real faces and understanding how this emotion can look different on different people and that there is a range within that emotion. Someone could be a little annoyed or they could be furious, and what the differences between those.

WADE WINGLER:  Mood panda. That’s a funny name.

KAT MUIR:  Mood panda is another emotion gauge. You can rate how you are feeling in response to events.

WADE WINGLER:  Three more that I think are interesting. Habit RPG?

KAT MUIR:  Habit RPG is used as a motivational tool to get activities of daily living accomplished. Some of us on the spectrum don’t have a lot of get up and go. We have a hard time getting out of what we are doing and getting into the next thing. You set up a character, and that character’s stats depend on how much of the activities you complete. It’s a bit like World of Warcraft, but you can experience points by cleaning your house.

WADE WINGLER:  I could probably use that. Two more you have here. What is Ingress, and the other is Zombies Run.

KAT MUIR:  These last two, again, a lot of people on the spectrum, we are not always really keen on getting outside and moving around a lot. We like to stay in and keep to ourselves. I like to use Zombies Run especially. You go out with your phone, your iPod, and you put your headphones on and it plays this narrative. You have to run away from the zombies so you don’t lose your character.

WADE WINGLER:  Augmented reality videogame. We are bringing the interview to a close, but before we go, do you have any advice for families of people who might expect that autism is part of their life?

KAT MUIR:  A few years ago, I made a video that aired on CNN. The big take away message that was part of that video was that your greatest challenge can be your greatest strengths. Trying to hide the features of autism, trying to pretend they aren’t there, that takes away from what the benefits are. If my parents had told me when I was little, “Stop repeating everything, don’t do that, that’s annoying,” I don’t believe I would have all these languages. I don’t believe I would be able to do what I do today. You never know what it is that’s going to make your child take off. If your child is really into cars, then reinforce that. Let them see how cars work. Maybe one day they’ll work towards having a career with cars that they just love. Finding something good and what could look like a negative it’s really important.

WADE WINGLER:  My audience does not have the access to you that I do because we work in the same organization and I can say hi whenever. If people wanted to reach out to you, if they had questions or wanted to learn more, do you have contact information you would like to provide?

KAT MUIR:  I would be happy to answer questions, or if someone on the spectrum feels like chatting and wants to get in touch with someone who has the same wiring, my email is kmuir@eastersealscrossroads.org.

WADE WINGLER:  I will pop that email address as well as the links to the apps that we talked about into the show notes so that people who have this on whatever device they listen to, they can click right through and get access to that. Cat Muir is a speech and they which pathologist here at Easter Seals crossroads and today has given us what I believe is a fascinating, very helpful, insiders guide to autism. Thank you so much.

KAT MUIR:  Thank you.
WADE WINGLER:  Do you have a question about assistive technology? Do you have a suggestion for someone we should interview on Assistive Technology Update? Call our listener line at 317-721-7124, shoot us a note on Twitter @INDATAProject, or check us out on Facebook. Looking for a transcript or show notes from today’s show? Head on over to www.EasterSealstech.com. Assistive Technology Update is a proud member of the Accessibility Channel. Find more shows like this plus much more over at AccessibilityChannel.com. That was your Assistance Technology Update. I’m Wade Wingler with the INDATA Project at Easter Seals Crossroads in Indiana.