By Bret Thayer

Autism, or Autism Spectrum Disorder (ASD) impacts more than 5.4 million adults and 1 in 44  children in the United States. It is one of the fastest-growing developmental disabilities in the world, but what exactly is autism and how is it understood by the medical community?

Defining Autism

According to the CDC, autism is a developmental disability caused by differences in the brain which can cause significant social, communication, and behavioral challenges (cdc.gov). People with ASD may also have different ways of learning, moving, or paying attention. ASD is  often manifested by repetitive or restrictive behaviors and challenges with social communication and interaction (signs and symptoms).

Autistic Self Advocacy Network, a nonprofit organization run by and for autistic people, defines autism as, “a developmental disability that affects how we live our lives and experience the world around us” (autisticadvocacy.org).

“We are one community: we think differently, we process our senses differently, we move differently, we communicate differently, we socialize differently, we might need help with daily living…There is no right or wrong way to be autistic. All of us experience autism differently, but we all contribute to the world in meaningful ways” (Autisticadvocacy.org).

Autism Includes A Broad Spectrum

It is important to note that there is a broad spectrum when understanding how the medical community approaches autism. The American Psychological Association, for example, describes autism as,

“Any one of a group of disorders…which includes autism, Asperger’s disorder,
childhood disintegrative disorder…are no longer considered distinct diagnoses, and medical or genetic disorders that may be associated with ASD, such as Rett’s syndrome, are identified only as specifiers of the disorder. (APA Dictionary of Psychology)”

So, all of the older terms such as Asperger’s Syndrome, Pervasive Developmental Disorder (PDD-NOS), autistic disorder, and childhood disintegrative disorder, have been combined under the umbrella of “autism spectrum disorders” or ASD (Slideshow: A Visual Guide to Autism by WebMD).

Dr. Matthew Hoffman of WebMd describes the types of autism ranging from “high functioning” to “low functioning.” He notes that all autistic people have difficulty with social interaction and communication. What he describes as “high functioning autism”, which includes those who have Asperger’s Syndrome, may be very intelligent and hyper focused on topics of interest, but have a harder time in social situations and understanding social cues. These symptoms, or behaviors can manifest in more severe cases of autism as losing significant social, language, and mental skills.

These challenges are also reflected in Autism Speaks, “The ways in which people with autism learn, think, and problem-solve can range from highly skilled to severely challenged. Some people with ASD may require significant support in their daily lives, while others may need less support and, in some cases, live entirely independently” (autismspeaks.org).

However, while acknowledging the wide range of challenges that an autistic person can experience, there is some pushback against a strict clinical view of autism as solely based on a person’s ability to function. The Autistic Self Advocacy Network, for example, sees functioning labels as harmful in that it “…makes it harder for us to get the help that we need, and for us to make the choices we want” (autisticadvocacy.org). Instead, they advocate for a more individualized approach by recognizing the strengths that a person has and the support that they may need.

Autism Diagnosis

There is no lab test for detecting autism, often symptoms are seen by parents, caregivers or family members and reported to the child’s pediatrician, often between eighteen months and four years of age. WebMd describes this as a two step process: well-child visits with a pediatrician and follow-up evaluations from a child psychologist, speech-language pathologist, and in some cases, an occupational therapist (WebMd-diagnosis). To fall within the autism spectrum, children display problems in two categories: challenges with communication AND social interaction and restricted and repetitive patterns of behavior. Early detection is key in order to help children with autism get the support they need at home and in school.

Adults who are later diagnosed with autism usually exhibit mild symptoms or were misdiagnosed as a child. They may have a child that has been diagnosed, suggested for testing by their doctor who is treating them for another condition, or may explore on their own to see if their symptoms and habits reflect autism (WebMd-adult diagnosis). Adults with ASD may have become good at managing their own symptoms.

“When you visit your doctor (as an adult) or autism specialist, expect them to observe your behavior and ask a lot of questions. They might use a children’s checklist because many of the symptoms are the same, like repetitive behavior, obsession with daily routine, and difficulty with social interaction” (WebMd).

Challenging Misconceptions of Autism

There are many misconceptions of Autism, often based on social media or movies like Rain Man (1988). Misconceptions and stereotypes about autistic people often range from super aggressive to passive, from super intelligent to unintelligent, from emotionally explosive to non-emotional. As the workplace becomes more diverse, it becomes important to have an understanding of our autistic co-workers. As Christine Condo puts it in her article, “So Your New Coworker is Autistic. Now What?” navigating the world of the neurotypical workplace for a person with ASD is challenging.

“Anyone with an autistic co-worker needs to know that we autistics do not naturally interpret appropriate neurotypical (NT) social behavior. Our autism prevents us from negotiating the subtleties of unspoken meanings on the fly. Instead, we spend years learning them from trial and error. Even the most adept of us must put considerable, conscious effort into what amounts to an elaborate performance, to a degree above and beyond anything a non-autistic person has ever had to make. It’s extremely taxing, in that we must constantly be on guard, and as such, it takes up a lot of mental energy. In demanding or overwhelming situations, we simply don’t have the energy to spare on these social performances. That energy gets diverted away from hiding our autism and towards attending to the task at hand” (Organization For Autism Research).

What often occurs in the workplace is the perception that autistic people are rude or aggressive, when they are actually under stress and have difficulty managing their tone of voice in a way that neurotypical people do. “When your autistic co-worker shifts into a flat or sharp tone, resist the temptation to assume that they are angry at you. Remember it’s not intentional. Instead of withdrawing from them, approach them, if you can, and ask them what they need” ( Organization for Autism Research).

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

Join us on Understanding Autism Podcast as we tackle these misperceptions and stereotypes and learn more about people with autism.

The post What Is Autism? appeared first on Understanding Autism.

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.

That opportunity sparked my passion for autism advocacy. I felt proud of who I was and didn’t see myself as someone that had overcome or beat autism. I valued my difference if it meant that I could help others like me. Since 2004, my family raised so much money for the Autism Society of Colorado that we were the second annual honorees of the Face of Autism event in 2009.

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.

Josh was born on a snowy day in December. He was a late talker but an extremely observant, if quiet child. Josh loved his Thomas the Train toys! He would spend hours playing with them and arranging them in different ways on the floor (mostly from largest to smallest).

None of this raised any red flags with us, Josh just seemed to be content playing by himself. Occasionally, there would be outbursts and tantrums, often over playing with toys with his older brother, but again, nothing seemed out of the ordinary.

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.

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