Season 1 Episode 1 (Blog)

By Bret Thayer and Nicole Kubilus

Meeting of the Minds artwork by Nicole Kubilus

Nicole: Autism is My Passion

I was diagnosed with autism in April of 1993. What led to my diagnosis were the classic autistic behaviors of a toddler: head banging, chronic meltdowns, biting myself, and having delayed milestones like speaking. At the time, no one was really clear what my level of functioning would really be. The nuances of autism being understood as a spectrum wasn’t really there. Also, Temple Grandin had not yet published books about her experience living with autism. I went through four years of intensive therapy with the goal of curing my autism, or at least getting me to a high enough level of functioning that I could enroll in mainstream elementary school classes.

I reached a place where I was able to enroll in a public school kindergarten class without anyone knowing–myself included–that I was on the autism spectrum. Many of my therapists advised my parents not to tell my teachers that I had autism out of fear that I would be treated differently or placed in special education classes. Still, if I wasn’t autistic, I was for sure the highly sensitive weird kid. My neurodiverse behavior was very apparent. My peers thought I was strange. It was hard to make friends. I experienced a lot of bullying and alienation. Even though I liked school, I also got anxious and flustered by certain subjects.

My second grade teacher suspected that I had autism and brought it up to my parents. My mom tentatively confessed that I was on the autism spectrum. My teacher was relieved. Now that she confirmed that I had autism, she could accommodate my learning needs better. My parents were shocked by my teacher’s acceptance and adaptability towards my diagnosis. They saw the value of disclosing my autism to my teachers as a way to get me help and started doing so from that point forward.

My parents didn’t tell me about my diagnosis until I was nine. They wanted to ensure that I didn’t see myself as a flawed, disabled child. The news didn’t phase me. I was too young to really understand what it meant to be autistic or feel any sort of shame of being different.

Three years later (2003), the executive director of the Autism Society of Colorado approached my mom asking if I would be interested in speaking in front of Colorado legislation to pass a bill offering financial support to families of children with autism. At the time, traditional autism treatments such as ABA, speech, and occupational therapy were paid out of pocket and very expensive. Convincing the Colorado legislators to pass this bill was contingent on proving to them that the treatments were successful in treating autism. My mom wasn’t sure that she wanted me to do it out of concern for how much media attention I would get for being openly autistic. However, I was insistent on doing it. I was excited to share the story of my autism journey to help other people.

Though autism advocacy has always been a passion of mine, it wasn’t something that I thought of turning into a career. Art was my primary passion. I graduated from Savannah College of Art and Design with my BFA in painting in 2014. Four years later, I received my teaching license in K-12 art education from Colorado State University. My passion for advocacy, equity, and inclusion was what inspired me to be a high school teacher.

Bret: Autism Was Scary

In the late 1980s I was a student at CU Boulder attending classes to obtain my teaching license. I remember sitting in my Adolescent Psychology class when first learning about autism. Only one paragraph from my textbook Educational Psychology: Theory Into Practice (1986) mentioned this condition.

“A very small number of children suffer from severe emotional disturbances such
as childhood schizophrenia or other psychotic disorders and autism…Autistic
children are typically extremely withdrawn, and have such severe difficulties
with language that they may be entirely mute. They (and often psychotic children as
well) may engage in self-stimulation, such as rocking, twirling objects, or flapping
their hands. However, they may have other normal or even outstanding abilities”

(Slavin 455)

To a new teacher candidate, linking autism with childhood schizophrenia and other psychotic disorders made having an autistic student in your classroom a scary prospect. Movies such as RainMan (1988) did not help my understanding of the complexities surrounding autistic people; it just added to my sense that autism was a strange and mysterious condition. How I was supposed to teach an autistic child in my classroom was beyond my understanding. This of course all changed when my son, Josh, was born.

This all changed when Josh went to preschool. I remember very clearly when his teacher called, explaining that Josh had a difficult time playing with other children. He did not want to share, or compromise in playing with other children, and that he would have frequent outbursts which required him to be separated from other children. I was told that adults had to walk around the gym with Josh in order to calm him down from these episodes. “You should get him tested,” his teacher explained. “I think he has autism.”

This of course was devastating news. A million questions began racing through my head. “What exactly is autism? What does this mean for Josh at school? How can we help him at home? Can he function well enough in public schools? What does this mean for a future career? Is there a cure?”

Fast forward to today. Josh is a happy young man, studying illustration at CU Denver. I will be the first to admit, however, that it was an often confusing and bumpy ride along the way. As a parent, I made plenty of mistakes and learned a lot of lessons, both for raising an autistic child at home and finding ways to support Josh at school. Hence, one of the purposes of this podcast, for me, is to help those parents who have an autistic child navigate their way through the public education system and beyond. Our understanding of autism has come a long way from 1986 and there are many resources available to parents and those with ASD.

Nicole and Bret Meet At Arvada West High School

I [Nicole] started my first teaching job at Arvada West High School (Arvada, CO) in 2019. I was both excited and nervous to work as a teacher. Besides the usual new teacher nerves of running a classroom for the first time, I was concerned about how I would disclose my autism in the workplace to get help. I was an open book about my autism, sometimes to a fault. This came from a place of pride and confidence about my autism, as well as the outspoken nature of my advocacy. Working in a field that did not have a lot of autistic professionals concerned me. What would be the consequences of sharing my autism? Would administrators think that I am not emotionally mature or stable enough to work with students and keep them safe?

I decided to disclose my autism to the instructional coach first, hoping that she could tell me what other people to share my diagnosis with and what to say. She excitedly told me about a veteran social studies teacher who had a son close to my age on the autism spectrum. She thought it would be a good idea for us to meet. During that staff work week, Bret and I got acquainted with each other. In addition to meeting with the instructional coach and my evaluator, I checked in with Bret once a week for the rest of the year (including during the beginning of the COVID-19 pandemic).

What I loved about having Bret as a mentor was that I had a safe space to talk transparently about my autistic struggles as a teacher. Though my instructional coach and evaluator did a great job meeting me where I was as a person with autism, it wasn’t the same as talking to someone who deeply understood what it meant to live with autism. When I talked to Bret, I didn’t have to worry about carrying myself in a way that proved I was capable of being a teacher. I wasn’t nervous about revealing too much to the point of my professionalism coming into question. I could truly be myself, even when I was having bad anxiety or sensory overwhelm. Bret was patient, logical, and empathetic. He gave me great advice about teaching that met my autistic tendencies right where they were. His background in the Agile teaching style gave me a lot of organizational tools that helped me to be an effective educator.

My first year of teaching was incredibly difficult. I had horrible social anxiety, workaholic overwhelm with all of the lesson planning and grading, and I was stuck in a perpetual state of severe sensory overwhelm. On top of that, once I had teaching relatively figured out, I switched to teaching remotely due to COVID. It’s amazing that I got through it at all. What motivated me was supporting my neurodiverse students and envisioning myself being an instructional coach to future autistic teachers. That gave me perspective that every unique challenge I had would pay itself forward as a way to help others. Bret was such a valuable mentor during that time in my life. I was tremendously grateful for his support.

Nicole’s Journey From A Mentor to a Podcast Host

Since I was hired at Arvada West High School on a sabbatical contract, it meant that I had to find a new job after the school year was up. I then taught for two more years at Thunder Ridge High School in Highlands Ranch, CO. Bret and I stayed in touch as each other’s networks, but we did not meet once a week like we had previously done. I saw this as a good thing because I had become more independent and a little more confident as a teacher.

Three years later, Bret had retired from teaching and asked me if I would want to host a podcast with him about autism, which was timely since I was already planning to start my own podcast about autism. I was excited to start my podcast with someone else, especially someone that was a parent of an autistic child. We both saw value in our teaching experience as adding extra value to our podcast discussions. We started working on the podcast soon after.

Even though this journey is just getting started, I am so grateful to continue my autism advocacy and education work with Bret through our Understanding Autism Podcast.

Nicole Kubilus, autism advocate and former art educator. She is currently working towards a certification in counseling and is a co-host for the Understanding Autism Podcast.

Bret Thayer has been a public school teacher for 27 years in Colorado. He is a parent of an autistic child and a co-host for the Understanding Autism Podcast.