ATU310 – Part 1: 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.

Show notes:
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 310 of assistive technology update. It’s scheduled to be released on May 5, 2017.

Today we have a fascinating interview that include some assistive technology that really is a bit of a departure from our normal format. One of our speech pathologists here at Easter Seals crossroads is named Kat Muir and she is someone who is on the autism spectrum herself and is going to present it was a two-part episode called “The Insider’s Guide to Autism.”

We hope you’ll check out our website at www.eastersealstech.com, sent us a note on Twitter at INDATA Project, or give us a call on our listener line at 317-721-7124.

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One of the things we tried to do here at Easter Seals crossroads of major that our staff are informed about all kinds of things that are disability or assistive technology related. Like a lot of places, we do in services every once in a while. Sometimes our in services involve people from outside the organization to come in and teach us about things, and sometimes we rely on our in-house expertise. Recently our entire organization that untended this in-service was going away. The title was “The Insider’s Guide to Autism,” and it was done by Kat Muir, who was one of our speech language pathologists here, and I heard the presentation and said we have to have her come into the studio and try to re-create some of the content that really gave me some insight and understanding about autism in a way I was never able to do before.

I’m always excited when I have guests in studio. Welcome.

KAT MUIR:  Hello.

WADE WINGLER:  I’m so glad that you’re here today, and thank you for taking time out of your work schedule this morning to hang out with me in the studio. Before we start talking about the things that you covered in your presentation, tell me a little bit about your current job and role with Easter Seals crossroads.

KAT MUIR:  I’ve been a speech language pathologist with Easter Seals crossroads for almost 6 years. Before I started, Easter Seals didn’t have much in the way of bilingual services. I showed up with six languages under my belt and took off working with families whose first line which isn’t English. I’ve been living it ever since. I do North and South clinic, early intervention, and a work in the schools.

WADE WINGLER:  So you work primarily with children?

KAT MUIR:  Yes. I work with kids from birth to 18.

WADE WINGLER:  You said six languages?

KAT MUIR:  Yes.

WADE WINGLER:  First of all we have to do a rundown of the languages. Tell me about these languages and how that came about that you are – there’s the word bilingua, tetra-lingual. What’s the word for six language is?  Is there one?

KAT MUIR:  It would be hexa-lingual.

WADE WINGLER:  I guess it would be. What are the languages?

KAT MUIR:  I forgot one. I didn’t count English, so that would be septa-lingual. I grew up in Canada while I was a little kid, and I got French included. Then we moved to the US. I started taking Spanish in high school because I thought that would be useful. I could have French and Spanish. But I really always wanted to learn German. I couldn’t wait to get to college so I could start learning German. I thought, why stop there?  I started some Mandarin and I got into studying speech pathology so I had to learn some American sign language. Then just for fun I started learning Farsi, which is an irony language.

WADE WINGLER:  Excellent. Obviously you love language.

KAT MUIR:  Yes.

WADE WINGLER:  You are a speech pathologist who is hepta-lingual.

KAT MUIR:  Yes, it goes with the territory.

WADE WINGLER:  You were recently asked to give a presentation to our staff about autism. I think you come from a unique perspective. Tell me a little bit about the things you had in your slide presentation about your early days, symptoms, non-diagnosis.

KAT MUIR:  I was an only child. I just went against all the applications you have for what a child is going to do. I seem to really far ahead in some areas but then inexplicably behind in other areas. I said my first word at around eight months, but I didn’t really talk to people. I would just play with words and play with sounds. I didn’t get upset over something like scraping my knee as much as I would get upset over someone using the wrong word. I’ve grown up hearing the story about being at my grandmother’s house, and I was eating soup or pasta, and she said clean your plate and is time to go. I got so upset, I was inconsolable. I was really frustrated. But she finally got me calm down enough to ask what was wrong. I said it’s not a plate. It’s a bowl.

WADE WINGLER:  So you are terribly upset?

KAT MUIR:  I was terribly upset.

WADE WINGLER:  I guess that makes sense because she was wrong, right?

KAT MUIR:  She was. You have to use the right word.

WADE WINGLER:  In the presentation you talked about the interesting things about you. You listed off some of your hobbies; you mentioned that you are a member of Mensa; and you disclosing have autism.

KAT MUIR:  Yes.

WADE WINGLER:  That’s a little bit unusual for a person of your particular demographic, right?  Can you tell me about that?

KAT MUIR:  It is. When you see information about autism, you always see it represented by a young child, a boy, usually Caucasian, between the ages of three and eight. Autism is so much bigger than that. We know it’s a spectrum of symptoms, but we also know that it’s a spectrum of the types of people who present with autism. I wanted to represent that autism affects people of color, affects adults, affects women, and that saying that I can’t have autism because I seem so smart, that that doesn’t compute because being smart and being autistic are not mutually exclusive.

WADE WINGLER:  That makes sense. I think you mentioned is a little bit. Typically it’s a higher prevalence among males, right?

KAT MUIR:  That is what we’ve seen statistically, that it is more frequently diagnosed in males. It may be that it is more commonly occurring in males, but it may be closer in prevalence between males and females than we currently understand it to be. Females do present differently.

WADE WINGLER:  That makes sense. I’m jumping around in my outline which is not fair so I apologize. You had a slide that made me giggle. It was called “Pamela’s Kitchen Nightmares.” It had pictures of all kinds of orange foods. Can you tell me about that?

KAT MUIR:  Apologies to my mom, I was a very picky eater. I always gravitated towards foods that were orange, carrots, macaroni and cheese, orange juice, orange soda. I always wanted my mom to get me orange Creamsicle cake for my birthdays, and she thought that was disgusting. I wasn’t doing it on purpose. I didn’t realize the foods were orange. It was only in the last few years I thought, I wonder why that is. I don’t know. I think there is some kind of association in my brain that says orange equals tasty.

WADE WINGLER:  That’s awesome. You had another slide, and the title was “Hyperlexia.” Based on the number of language you speak and the fact that you found a career in that that is coming together and making sense to me. But talk about hyperlexia and what that looks like in your life.

KAT MUIR:  Hyperlexia is when a person is drawn to the forms of letters and numbers at an early age and are able to read well but not necessarily have the comprehension. I started to be interested in letters and numbers shortly after my first birthday. Mom was reading a book, and I would point to the big scripted capital letter at the beginning of each page and say what’s that. She would say that’s a capital T. The next page, what is this?  That’s a capital letter S. Why am I telling this to an infant?  After about two weeks, I stopped asking because I knew them all. She was taking me somewhere one day. She was going to put me in my car seat, caring me to the car in the garage. My eyes are fixed on the opposite wall, and I start chanting “Two T’s, Two T’s, Two T’s”. She thinks what?  She looks and sees there are these two squeegees hanging on the wall that look like the shape of two letter T’s. She thought, huh, okay then.

WADE WINGLER:  And you are about what age at this point?

KAT MUIR:  Maybe a year and a half. I had a letter and number based names for a lot of the features in my environment. I would look at the stairs and called them the sevens. I would look at the shape of the wood panels on barn doors as we drove past farms, and I would call them the zed’s — because this was Canada — so I called the Z shapes the Zed’s.

WADE WINGLER:  You also had a slight here talking about synesthesia. That was a new word for me. I wasn’t aware of that. Talk to me about synesthesia.

KAT MUIR:  Synesthesia is the cross wiring of senses in the brain. You might hear a word and experience the sensation of a taste in your mouth. Or you might touch something, and it might make you think of the color. I have one of the more common forms of this where I see letters and numbers, and they are associated with colors, patterns, textures. Those never change. They were set in place when I was very young, and they’ve been the same ever since.

WADE WINGLER:  In the slide sharing the presentation cow you gave us some examples. I think you might have done ABC and 123. Can we talk through those examples?

KAT MUIR:  The letter A I always see, no matter what font it’s written in, in my mind, I always pictured it as long and away the like an italic font, and it’s always a very fluid deep red, almost reminding me of the bloodstream. The letter B is deep blue with gold flashes or lines that appear across it. The letter C is orange yellow and has almost a woodgrain texture, very angular and square and box-like. The number “1” is like a sphere of white light that turns to yellow. The number “2” is an aqua blue and has a rippling water-like effect that goes from the upper left of my field of vision to the bottom right, so it’s very specific. The number “3” looks like a big blank wall that someone has thrown splashes of bright green and bright pink paint on two.

WADE WINGLER:  Those are vivid.

KAT MUIR:  They are very specific and never change.

WADE WINGLER:  While you’re describing them, I’m closing my eyes and trying to re-create that in my mind. They sound beautiful. When you came into the studio today cow you set down and we were chitchatting before the interview. You noticed on the wall we have some sound dampening panels. I’m going to describe them my way and then I’m going to ask you to describe them your way. There are probably 20 or so of these around the room, maybe slightly more. They are made of foam and are a charcoal gray but have a speckled pattern that’s being picked up by the light. I would call them louvered, sort of triangular-shaped and stacked on top of each other. If anybody’s been in a recording studio, you might have seen these patterns before. When you came in, we were talking about this synesthesia, and you describe them differently to me. Tell us about that.

KAT MUIR:  I couldn’t take my eyes off them because I’m seeing this off black, shiny surface, that totally reminds me of the number five. As you look at them from the angle I’m sitting, I can see the shape of the number seven carved out on the side. They stick in my mind as the number 57. When I talk about this interview later, I’m going to say I saw Wade in the room with all the 57’s on the wall.

WADE WINGLER:  It was funny because then we took the conversation further and I said when I think of 57, I think of Heinz 57 sauce which is red liquid in a bottle. But when you talk about Heinz 57, you talk about it differently.

KAT MUIR:  I said it’s more like 91, because it’s liquid and red and tangy and citrusy, which reminds me of the number one.

WADE WINGLER:  And I decided that one sounds delicious. That’s fascinating stuff and that was a new concept to me. I’m glad that you shared that. One of the next slides you discussed in the presentation was about sensory issues. We talk about clothing and pressure and spinning things. Can you tell me about those experiences?

KAT MUIR:  I would have tag anxiety about getting new clothes when I was a kid. I was elated when “Tagless T’s” came out, and now I don’t have to worry about that anymore. Really, there is a lot of clothing innovations that are helpful for people with sensory issues. I can get socks that don’t have that seem in the front. I would hate when I got under my toes. Pull on pants because I don’t like to have to fiddle with the buttons. Sometimes I have a hard time getting buttons on shirts or pants through the hole. I’m sometimes a little clumsy. It’s a good world for sensory people going shopping.

WADE WINGLER:  A lot more options.

KAT MUIR:  Yes.

WADE WINGLER:  Not in a similar way, but I love Levi 501 blue jeans. I just like the fit and look at them. They have six or seven buttons in the front so that’s a total no go, right?

KAT MUIR:  It would take me about an hour to put those on.

WADE WINGLER:  I struggle sometimes. You talked about spinning things. Tell me about that.

KAT MUIR:  I just like to watch things spin or move around. I like the feeling of being spinning. I’ve taken aerial silks classes like they do in Cirque du Soleil. I don’t look like that. I look like laundry in the washing machine. It’s still fun and I love the feeling of just being slowly turned around. It’s very relaxing. It’s like all the sensory problems I’m feeling go away. There can be loud music – there usually is loud music playing in the studio – when I do that, I barely notice it because I get absorbed in the feeling of the spin.

WADE WINGLER:  Are there other sensory issues that create challenges or that are unique?

KAT MUIR:  I mostly have difficulty with being overly sensitive to sound. I think that has been the biggest challenge. I was in a dorm. It was my last year of undergraduate. Someone put something with foil in the microwave and set off the fire alarm. There was the regular fire alarm, but there was also this high-pitched squealing thing that accompanied it. I felt so dizzy, it felt like I was kind of becoming detached from my body. I fainted in the hallway. I came around later, and everyone was still outside. I’m glad there wasn’t a real fire.

WADE WINGLER:  Wow.

KAT MUIR:  On the upside, I think it is the sensitivity to sound that has allowed me to get so far with picking up new languages. I can hear the difference between phonemes in Mandarin, the different speech sounds, that a person learning it at the age of 21 shouldn’t necessarily be able to pick up on. As with most things we come across, autism has its upsides along with what seemed like downsides.

WADE WINGLER:  One more thing from this part of the presentation. You had a picture of a wavy windsock. Everybody giggled about that. Tell me about that.

KAT MUIR:  I will never live this story down. I was 15 and I went with my parents to Disney World in Florida. We were just walking around, and then we saw this two-story tall, big pink windsock man like those sky dancer guys you see outside car dealerships. I love Indiana because they are everywhere. This one was extra cool because it had two legs. It wasn’t just a tube. It had two legs, two arms, a head, wavy, and it was waving and undulating. I could not stop looking at it. I guess we stayed there for about 20 minutes looking at this thing. As I remember it, I glanced at it. My mom said, no matter how long we left you there, it wouldn’t have been enough time. You could look at that forever. It’s that waving movement. It’s very relaxing and entrancing.

WADE WINGLER:  Interesting stuff. You said something about conversation when you were little, especially, and your perspective of conversation. It seemed like a contest. Is that right?

KAT MUIR:  That’s right. I didn’t see it as I’ve come to see it now. It took two years of graduate study to figure out that conversation is supposed to be a way to build up social relationships. It is not a contest to see who could say the most interesting thing, which is what I had thought for my entire life up to that point. I thought you could just say whatever you wanted because other people constantly said things that weren’t of interest to me, and I was expected to listen to it and contribute to that. I thought I should be able to say what I want and they’ll contribute to it.

I remember one day I was in grade 8, and all the girls were talking about Britney Spears and Christina Aguilera and whoever else was popular back then. I thought I’m going to play too. I came up and said, “In World War I, all the airplanes had front mounted machine guns, but it wasn’t until a stopping synchronizing mechanism was created to shoot the bullets in between the propeller blades so the pilot wouldn’t shoot their own propellers off.” I stopped, mic drop, I got this. They did not agree.

WADE WINGLER:  Wait a minute. Eighth-grade girls, were they mean?  Did they disregard you?  How did they react?

KAT MUIR:  They laughed about it and would go on to do things that I didn’t understand. They would ask me later to tell about it again. I would do that because they are asking me so clearly I’m supposed to tell about it again. I didn’t understand that it was because they were thinking, I can’t believe she’s doing it again. It was foreign enough to me that that topic would be interesting to them but that they would have this kind of ulterior motive about getting me to talk about it. It was a completely foreign idea.

WADE WINGLER:  In that part of the talk, you also talked about understanding that understanding the people were being sad but not being sad yourself.

KAT MUIR:  I would see people on the news, talking about being sad, or if there was a tragedy that affected the school. I was the other students being sad and getting counseling for it. I would be kind of confused because I would think, okay, I get that what happened is sad. It’s sad in my brain. But I don’t feel sad about it. I’m not going to cry about it. I don’t know how to react to these people being outwardly sad. I could feel sad about things that affected me directly. I thought, wow, there must be something really wrong with me if I’m only feeling sad for myself and I’m not feeling sad for the people.

WADE WINGLER:  I’m sure that was a big thing to recognize and understand.

KAT MUIR:  Yeah. And that is something I work with a lot of my consumers to help them understand, that it’s okay if you don’t feel or experience something in the same way someone else does because no one experiences anything the same way. But it’s about how you react to that, how you respond to them, because that you can choose. You can decide, okay, I’m going to say to them I’m sorry to hear about it, do you need to talk about it.

WADE WINGLER:  That’s all the time we have for today. Join us next week when I’ll start with the question, do you disclose the fact that you are on the autism spectrum to the people you serve as a speech and language pathologist. Pick it up next week.

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.