Autism Interview #65: Kat Muir on Socializing, CBT, and Advocacy

Kat Muir is a speech-language pathologist employed at Easterseals Crossroads. She has a B.S. in Speech & Hearing Science and an M.A. in Bilingual Speech-Language Pathology. She speaks fluently in English, Spanish, German, French, Farsi, ASL and some Mandarin and is currently working on learning Vietnamese. She is also a member of Mensa and a public speaker. This week she shared how she has managed some of her personal struggles as well as how she works today to help others with disabilities.

Describe some of the most rewarding aspects of your current job.

In my work, I have found a place where I can put my unusual skills to their best use. I am sometimes able to use my seven languages to work with families who are not exclusively English speakers. Sometimes a family will come to us speaking a language I don’t speak (yet!), and I can be found learning the sound system and grammatical structure while I prepare to meet them. Making an honest effort to communicate across a language barrier goes a long way in building rapport, and the same is true for communication between those on and off the spectrum. Another meaningful part of my job is being able to work with kids as a professional who is also a mentor. I have faced many of the challenges my speech friends experience, and because I was not diagnosed until I was 22, I had to find solutions on my own much of the time.

One of my kids likes to hug everyone he sees. I told him that when I was 3, I hugged everyone tight because I liked the way it felt to squeeze. I was scolded for it, and didn’t understand that the other kids did not like it. After that, I usually had a stuffed animal with me so that I could get a dose of squeeze without hurting anyone. He looked at me and said, “Wow, you did that?” Hearing the story about someone else, someone he knew, helped him understand his own situation better. He now asks for permission when he wants to give a hug. Those moments when I can say “been there, done that” and help kids work through challenges are the best moments. I try to do what I wish was done for me as a kid.

You mentioned in an interview last year that you tried Cognitive Behavior Therapy. Can you assess the effectiveness of this particular therapy for you, personally?

I first began Cognitive-Behavioral Therapy (CBT) after being diagnosed with Obsessive-Compulsive Disorder, Depression, and Bulimia Nervosa. Although I had been seeking help with my difficulty interacting with people, these three diagnoses interfered so much with my ability to do anything other than get myself to school and complete my assignments, that they needed to be addressed first. For 8 weeks, I attended sessions. Being a very rigid thinker, I had developed maladaptive ways to deal with problems, and my sense of reason was fighting a losing battle. For example, because I noticed that people seemed to always have an immediate negative reaction to me, I was convinced that it was because I was fat. I’m not entirely sure how this mental connection was made, but I remember vividly at 16 developing a preference for eating alone and being alone after eating so that I could just do what I felt I had to do. CBT forced me outside of my rituals. I had to eat something delicious and unhealthy in the school cafeteria and had to stay in sight of other people for an hour after. It felt like the longest, fattest hour of my life. It sounds like torture, and at the time, it kind of was. But afterwards, when my clothes still fit and no one treated me any differently, it started a new thought pattern in my brain to replace the long-standing food ritual.

Once those diagnoses were managed with therapy and medication, I received the diagnosis of Asperger Syndrome. I began a new course of CBT, but this time to focus on building my endurance around others. I was assigned weekly “social homework,” like finding a restaurant near the speech therapy building on campus, and suggesting to my classmates to go there after class. I also started mystery shopping; secretly evaluating in-store service. Approaching salespeople to ask a question was something I had never done before; in stores I would usually parrot “Just looking,” like I had heard my mom say before, even if I actually wanted something specific and couldn’t find it. Approaching and then trying to convince them that I was actually looking into new window treatments was the hardest time I had had learning something new since I finally mastered bike riding at 14. Again, it was helpful to be directly told what I needed to do, and showed me that if I can do it once with help, I could do it again on my own. CBT was helpful for me, like medication is helpful for me. It may not be for everyone, especially for those who don’t have or feel like they have an equal say in the process, like children or those who do not communicate using speech. It could be a scary thing to have CBT happen to you if you aren’t ready. I was ready.

What are some ways teenagers or adults can make autistic individuals feel more welcomed/comfortable in social settings?

A simple invitation is a great start! (Really!) Even when I want to spend time with others, I have trouble remembering that I can ask them and I don’t need a “reason”. It looks like when most people make plans, they are suggesting something: let’s go to the bar; let’s have a cookout at my house; let’s go to Chicago. Since I can’t think of something to suggest, it feels like I can’t ask. Please understand that just because we don’t often initiate doesn’t mean we don’t want to be included.

I also recommend what I call “activity-driven socialization”. This means that the social event is focused around an activity or achieving a goal, not on the socialization itself. When I try to go to an event like a party at someone’s house, unless I have a person next to me to guide or talk to me, I have no idea what to do and usually just stand in a corner and wait for something to happen. Because I don’t initiate well, I’m not sure how to start talking to someone I don’t know. I enter conversations, but I’m not really included in them by being asked questions or having an opportunity to learn the other people’s names or introduce myself. I’m not interrupting and I’m staying on topic, so I’m still trying to figure out why it doesn’t always work. But if I go to an event that has a goal, like rock climbing, or an event focused around an activity, like a dance class, there is just enough structure that we all have a shared experience to talk about, and I can focus my attention on the activity rather than the people if I need a break. Knowing the end time is also helpful. I know it’s not always possible to give a definite end time, but just knowing: “Friend’s house until 10, then home,” helps me be more present and enjoy the time. It’s like how someone may love running, but running a mile still sounds more appealing than running “until…”

How did you discover or develop a desire to be a public speaker/advocate for others on the spectrum?

It was sort of an accident. The good kind. When I was in school to become a speech pathologist, I wanted to work with adults with dementia or brain injury. After being diagnosed with AS, I took a course on communication disorders in Autism. I told my professor about my diagnosis, and he responded, “You’re not here in spite of this. You’re here because of this.” I then decided to focus on Autism, and make the most of the experience of being on the spectrum, that most SLPs would not have.

In 2012, I made a video for CNN’s Autism Acceptance Month video challenge, and it was aired as part of their program, along with others who are living their Autism to the fullest. I appreciated it for dispelling the stereotype that Autism always looks like a boy, white, age 3-8, who has difficult behaviors. There were people of color, users of communication devices, adults, women, and a DJ at a dance club! My mom said to me later, “I’m not surprised your video was on TV. But I can’t imagine you DJing at a dance club!” Even sensitivity to sound did not mean he couldn’t do what he loved.

For Autism Acceptance Month 2017, I presented an in-service at Easterseals Crossroads, and it was well received. I’m so used to how I live and think that it doesn’t seem exciting to me, but that’s because I don’t always remember that other people don’t have exactly the same thoughts that I do. I love to show that you never really know what someone’s limits are, even your own. I also love answering questions from neurotypicals. Things that seem obvious to me are not obvious to them. Much like how I miss the “obvious” in social situations. We learn so much from each other.

In a podcast from last year, you mentioned several apps that you recommend for children on the spectrum. Which one(s) do you find that your clients most enjoy or find the most helpful?

One that I can’t recommend enough is Conversation Builder. I would have loved this as a kid. You’re shown a picture, and need to start or continue a conversation. You are given three options, but I’ll sometimes cover those up for kids who are more advanced or fixate on reading the printed text (as I would have). If you choose a less appropriate option, you get a brief explanation about what is lacking from that choice (e.g. doesn’t further conversation, off topic, could be perceived as rude). If you choose the best option, you can record your voice. After the conversation is finished, you get to hear yourself talking with the other character. It gives a great opportunity for young people to hear conversations in their own voices, and think critically about how they are presenting. Since we don’t always have the instinct for those unspoken conversational rules that neurotypicals do, we have to learn them in a structured, fact-based way.

What mistakes do well-intentioned, neurotypical autism advocates make?

We may need help, and we may not always be able to ask for it. But give us a chance to try before assuming we need something done for us. If we aren’t given chances to try, we aren’t given chances to learn. I often need more practice, not less, to be able to learn something new. Maybe brushing teeth solo has too many steps right now. That doesn’t mean it’s impossible to participate. Focus on putting the toothpaste on the brush without help. After lots of practice and making a new routine, more steps can be added. I know it’s easier said than done; so does my dad after trying his best for years to teach me to ride a bike. Dad stresses the importance of encouraging children to strive for just beyond their current skills. A realistic goal that isn’t frustrating, but still keeps the motivation going strong. I completely agree!

Another point I like to mention is the use of person-first language. In my field of work, person-first language is preferred, and I use it in the work setting unless asked to do otherwise. I personally don’t mind whether I’m referred to as autistic or a person with Autism, but if I were to choose for myself, I prefer to be called autistic. Autism can’t be separated from me. It’s like saying I’m blonde. I also don’t see Autism as a bad thing that needs to be downplayed. It’s not the only or most important thing about me, but neither is being blonde. Many Autistic people, myself included, see it as a cultural identity, similar to being part of the Deaf culture. It’s a fine line to walk between being offensive and condescending, and nothing makes everyone happy. Neurotypicals are usually the social awareness experts, and just a little effort goes a long way.

What’s the most important thing parents can do to help their children develop a positive autistic identity?

The most important thing I encourage, simple as it may seem, is to promote independence over “looking normal.” I’m so much happier when one of my kids approaches me and says, “What you do?” than when a parent coaches them: “Say, ‘Hi, how are you?'” and the child repeats. Kids come to me to work on their speech sounds, grammar, and vocabulary. But to work on any of those things, the person first has to initiate, to have a desire to communicate. I don’t want kids to lose interest in communication or stop thinking for themselves about what they want to say because they are stuck repeating. Parents are generally well-intentioned when they want their children to appear more neurotypical. They want their children to be accepted. But sometimes we need to be unusual so we can be normal. Case in point: As a kid, I was described by adults who knew me as “a parrot.” I repeated everything. This was not always fun for my parents, who heard me recite the Mercalli Earthquake Scale a countless number of times. But I did begin to use those recited snippets in meaningful ways as I got older and learned that there were times and places for the language I was learning. If my parroting had been discouraged or labelled “annoying” or “weird,” I probably would not have been able to learn German just from listening to music and radio. If a kid is really interested in fire alarms, support this! It may not be as popular an interest as football or Minecraft, but as long as it’s not dangerous, it can turn into something helpful. People need to make fire alarms, sell fire alarms, install fire alarms, or be CEOs of companies that manufacture fire alarms. There is more than one way to live an independent, fulfilling life. It wasn’t until I accepted myself as an autistic person that I found true independence and fulfillment.

 

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