Understanding Autism https://understandingautism.info/ Understanding Autism Podcast Wed, 24 May 2023 19:35:29 +0000 en-US hourly 1 https://wordpress.org/?v=6.6.2 https://i0.wp.com/understandingautism.info/wp-content/uploads/2023/01/UAP-Logo-Recovered-01.png?fit=32%2C32&ssl=1 Understanding Autism https://understandingautism.info/ 32 32 214911266 Stimming https://understandingautism.info/stimming/ https://understandingautism.info/stimming/#respond Wed, 26 Apr 2023 19:57:10 +0000 https://understandingautism.info/?p=240 Season 1 Episode 4 (Blog) by Bret Thayer An Autism Stereotype We have all seen an autistic child on T.V. or in the movies, hunched over, rocking, perhaps even biting themselves in a display of behavior that strikes the neurotypical person as bizarre, crazy, or really out there. And yet, many of us, whether we […]

The post Stimming appeared first on Understanding Autism.

]]>
Season 1 Episode 4 (Blog)

by Bret Thayer

This is a drawing of a woman in stress with stimming toys around her
Stimming and Fidgeting Artwork by Nicole Kubilus

An Autism Stereotype

We have all seen an autistic child on T.V. or in the movies, hunched over, rocking, perhaps even biting themselves in a display of behavior that strikes the neurotypical person as bizarre, crazy, or really out there. And yet, many of us, whether we are on the spectrum or not, may use a type of stimming behavior, although we might not realize it.

For example, as a neurotypical person, I often find myself drumming my fingers in odd patterns on the counter top as I am thinking about what to make for dinner; when I’m lying in bed trying to wake myself up, I fidget with my feet and toes.

In my classroom, every time I give a test or an assessment to my students, I see many of them tapping or spinning their pencils. Often, several students are bouncing their legs under their desks. To an autistic person, stimming behavior can be a common occurrence, but it is often met with surprise, annoyance, and shaming as it is often perceived as socially unacceptable behavior.

What Is Stimming?

Stimming or “stim” is self-stimulation which is commonly associated with autistic behavior. According to the DSM-5, a manual to help to diagnose autism, stimming is seen as a repetitive pattern of behavior which may manifest as “stereotyped or repetitive motor movements” (CDC Diagnostic Criteria for Autism).

Why Do People Stim?

Neurologically, one theory associates stimming with the release of beta-endorphins, a feeling of pleasure, due to a stress response (Autism360). Other theories center around the idea that the autistic person is using stimming as a means to comfort themselves given the environment that they are experiencing.

“Theoretical perspectives suggest that stimming has a sensorimotor basis…More recent theories have suggested that stimming my provide familiar and reliable self-generated feedback in response to difficulties with unpredictable, overwhelming and novel circumstances. As such, stimming may provide familiar and reliable self-generated feedback in response to difficulties with unpredictable, overwhelming and novel circumstances” NIH Autism (2019).

Stimming can result from an autistic person experiencing over-stimulation or under-stimulation, for example, or as a way to reduce a painful sensory experience. It can also be a way to manage emotions such as nervousness, excitement, or impatience or as a way to help maintain focus. Cynthia Kim, an autistic adult, sums up her experiences with stimming this way:

Getty Images

“Stimming happens for many reasons. I stim when I’m anxious. I stim when I’m thinking. I stim when my senses are overloaded. I stim when I’m happy. Stimming is a way of regulating my body and my mind. It calms me down when I’m over stimulated and reconnects me with myself when I’m under-stimulated. Often, I don’t even notice that I’m doing it” (Neurodevelopment Center).

Stimming may result in an autistic person having increased focus and attentiveness, it may be soothing and help to regulate emotions, and it may help in expressing pent up emotions. Stimming might actually be easier and more natural for an autistic child to express their anxiety or emotional distress than it is to verbalize their emotions.

Examples of Stimming

There are many different types of stimming behavior which can correlate to an autistic person’s sensory experiences in the moment (Medical News Today).

Stimming behaviors can range from physical or tactile movements, to engaging in smelling, auditory or visual stimuli. Types of stimming also differ among individuals in frequency, duration, and intensity.

Picture of a woman with thought bubbles on the different types of stimming behaviors.

The Urge to Stop Stimming

Since stimming is an obvious physical behavior in an autistic person, often neurotypical adults seek to limit or treat this behavior. Many caregivers and teachers might want to limit stimming due to the social repercussions that an autistic child might endure: bullying, alienation, or being socially rejected, for example. Others may feel that this behavior disrupts the learning environment for other students. And some stimming behaviors, such as biting or scratching can be harmful to the autistic student and to others.

Should stimming be stopped? “That’s the wrong question to ask”, according to Karen Wang, a parent of a neurodiverse child.

“First of all, no one can stop self-stimulatory behavior completely, because everyone does it anyway! Secondly, even if one stim can be removed, it will be replaced by another — and the next stim may be less preferable than the current one. The most important reason not to eradicate stimming is that you may cause your loved one to withdraw more and more and lose your opportunity to encourage healthy interactions. The far better question is, ‘Why does my child engage in this behavior?’ Seeking to understand the motivation for a behavior is always a great place to start” (Child Mind Institute).

If stimming is leading to physical harm of the child or to those around them, then the behavior should be modified to another stim response that is not as harmful and produces the calming effect that many children on the spectrum are seeking in a stressful environment. If there is a physical cause behind stimming, such as ear infections, chronic pain, or migraines, a medical exam can help to treat these underlying factors.

Another way to manage stimming is to look at the sensory factors that are leading the child to engage in this behavior. Why is the child feeling anxious? What are the sensory stimuli that the child is experiencing? Can these be reduced or managed? What is the child’s emotional response to this environment?

Distracting from the current environment through a change in physical activity or exercise may also help. From my own son’s experience, having a chance to take a break and walk around away from the stressful situation was extremely helpful.

A Bridge To Understanding

In a 2019 UK study, 32 autistic adults were asked to share their perceptions and experiences with stimming. Many reported that stimming was an “adaptive mechanism that helped them to soothe or communicate intense emotions or thoughts” (National Library of Medicine). Participants also expressed their frustration around being in environments that intentionally tried to eliminate the behavior or from those who had negative reactions to their stimming behavior. This often left them with the feeling that they had to try to change their behavior to better fit into the neurotypical world.

“They expressed that others might feel annoyed, stressed or alarmed by their stims and stated that observers might view them as strange, aggressive, sad, ridiculous or childish. Many wished to avoid drawing negative attention and, in response to feeling marginalized, attempted to suppress their stims in public. They also reported stimming when alone, for this reason.”

National Library of Medicine

The study concluded that participants felt that stimming provided an important coping tool and that promoting acceptance through understanding was key to the acceptance of non-harmful stimming in autistic adults (National Library of Medicine).

Ultimately, stimming is a healthy way of self-regulation for those on the spectrum. Schools and businesses would do well to allow this behavior and to offer accommodations for appropriate stimming. If we demystify the reasons for stimming while acknowledging that many of us engage in this behavior, it will go a long way to reduce the stigma behind stimming.

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.

The post Stimming appeared first on Understanding Autism.

]]>
https://understandingautism.info/stimming/feed/ 0 240
Avoiding Eye Contact https://understandingautism.info/1-3-eye-contact/ https://understandingautism.info/1-3-eye-contact/#respond Sat, 18 Mar 2023 21:29:48 +0000 https://understandingautism.info/?p=187 Season 1 Episode 3 (Blog) By Bret Thayer Eye contact is a central part of how we communicate. It connects us to other people in a unique and personal way. In Western culture, making eye contact is a sign of engagement, self-confidence, and a non-verbal sign that, ‘Yes, I am paying attention to what you […]

The post Avoiding Eye Contact appeared first on Understanding Autism.

]]>
Season 1 Episode 3 (Blog)

By Bret Thayer

Nicole's self portrait drawing shows the anxiety behind maintaining eye contact
Title: The Stress of Making Eye Contact Materials: graphite on paper Dimensions: 17″x14″ Year: 2023

Eye contact is a central part of how we communicate. It connects us to other people in a unique and personal way. In Western culture, making eye contact is a sign of engagement, self-confidence, and a non-verbal sign that, ‘Yes, I am paying attention to what you are saying.’

But what do we think when we are speaking with someone who does not make eye contact with us? Are they oblivious, indifferent, or lack any interest in what we are saying? While many autistic people experience challenges in maintaining eye contact, it is important to remember that not all do; autism is a spectrum disorder, impacting different people in different ways.

Neurological Factors

There are three main causes for lack of eye contact: neurological, sensory, and emotional. In one 2017 study, scientists believe that the subcortical area of the brain (activated by eye contact and responsible for processing emotions and facial recognition) is oversensitive to direct gaze and emotional expression in autistic individuals Mass General Research Institute. When autistic participants were presented with fearful, happy, and angry expressions, over-activation of this region of the brain occurred. This suggests that “there is an imbalance between the brain’s ‘excitatory’ network, which reacts to stimulation, and its inhibitory network, which calms it down” Mass General Research Institute. This over-activation of neurotransmitters results in overwhelm, an aversion in making eye contact, and social anxiety for being in situations that require eye contact with others.

In another study, researchers at the Yale University School of Medicine found that autistic individuals who tried to maintain eye contact showed less activity in another area of the brain. “The experiment found that the dorsal parietal cortex was less active when a person with autism tried to maintain eye contact with their partner. The more severe the ASD diagnosis, the less their brain lit up” Psychiatrist.com. 

“The (Mass General Research) findings suggest that behavioral therapies that try to force individuals with autism to make eye contact could be counterproductive. A better approach may be to slowly introduce these individuals to eye contact so they can learn strategies for managing the accompanying sensations” Mass General Research Institute. 

Sensory Factors

To a person on the spectrum, maintaining eye contact is just one of many sensory experiences that they are processing in a conversation. The tone of the person they are speaking to, their body language, environmental noises, smells other environmental conditions contribute to a flood of sensory inputs that can overwhelm a person with autism.

The challenge of processing all of these sensory inputs can lead to physical discomfort, anxiety, and meltdowns which can have a profound impact for autistic people in socially intensive environments such as school and work.

“If you’re autistic, it might be difficult to explain to other people how a sound, light or sensation makes you feel. One thing that is important to get across is that this is very real, and it’s probably very different from how they experience the same sensory input.” 

Dr. Claire Jack, Psychology Today
This is a picture of a woman with her eyes closed thinking about all of the factors that she has to process to engage in a conversation.

Removing the social norm of maintaining eye contact in a conversation might help the autistic person to focus on other sensory factors and reduce the risk of overstimulation.

Emotional Factors

Conversations are an important part in establishing and maintaining human connections. Reading and interpreting emotional queues of a person that we are talking is a skill that we develop over time. Those on the spectrum may have difficulty interpreting facial expressions and experience frustration in predicting the next emotional response of the person they are talking to.

“Humans recognize different emotions, such as sadness and anger by looking at  facial expressions. Yet little is known about how we come to recognize different emotions based on the visual information of facial expressions. It is also not clear what changes occur in this process that leads to people with autism spectrum disorder struggling to read facial expressions” Neuroscience News.

Another factor which may impact a lack of eye contact may be an indication of boredom, that the topic is not engaging or simply that the conversation is taking a long time to develop. Not visually connecting with a person they are talking to may be a nonverbal signal to move on or a want to do something else.

Finally, eye contact is a form of trust building and can relay a connection between two people. Not engaging in eye contact might be a reflection of past experiences of alienation and social judgement or a defense mechanism due to past experiences.

Solutions

Eye contact is important but not in every single social situation. Autistic children should be able to decompress at home and feel safe to be themselves and not have to experience the same social expectations that cause them stress at school or work.

“Autistic children should not have to feel that they have to mask their autism at home. That should be the place where a person with autism can unwind and be their neurodiverse self. They should be able to relax and be themselves around their parents, which would be the most trusting relationship. It is more important for a child to decompress at home than it is to master eye contact” (Nicole Kubilus).

Find a teacher or educate teachers with not requiring eye contact so that autistic students can have a break in their day.

Building understanding with our loved ones and establishing a safe space at home applies to adults with autism as too. “Our best friends and life partner will not abandon us if we struggle to maintain eye contact. We should be able to feel comfortable with being our autistic selves in our closest relationships and not feel that we have to mask our autism all the time” (Nicole Kubilus).

Eye contact should never be forced. Stay away from therapies or practices that force autistic children to maintain eye contact.

“When considering whether you have made a wise choice in what therapy you are providing your child or not, you want to always remember a few cardinal rules: behavior is communication and/or a means of self-regulation. Communication is more important than speech. Human connection is more important that forced eye contact. Trust is easy to shatter and painfully difficult to rebuild. It is more important for a child to be comfortable and functional than to look normal” Maxfield Sparrow, “ABA” October, 20, 2016.

For those with mild to moderate autism, have an honest conversation with your child about eye contact. “Why do you feel uncomfortable making eye contact? When do you feel comfortable making eye contact?” Let them know when it is okay and not okay to avoid eye contact and why. Allow your child to feel comfortable practicing eye contact, in the mirror, with animals, or with toys, for example. Body-based therapies to relieve stress and tension such as yoga, somatic or craniosacral therapies might help too.

In the end, it is important to make your child comfortable with who they are and explain to them that everyone can struggle to maintain eye contact.

Autism and eye contact

Mass General Research Institute 23 June 2017

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.

The post Avoiding Eye Contact appeared first on Understanding Autism.

]]>
https://understandingautism.info/1-3-eye-contact/feed/ 0 187
What Is Autism? https://understandingautism.info/what-is-autism-episode-2/ https://understandingautism.info/what-is-autism-episode-2/#respond Fri, 17 Mar 2023 23:30:53 +0000 https://understandingautism.info/?p=152 Season 1 Episode 2 (Blog) 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 […]

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

]]>
Season 1 Episode 2 (Blog)

By Bret Thayer

This is a drawing of two puzzle pieces within an infinity symbol (the symbol of autism).
What is Autism? Artwork by Nicole Kubilus

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).

Infographic:1. Communication Challenges 2. Social Preferences 3. Behavioral Markers
http://webmd.com/brain/autism/symptoms-of-autism

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).

Infographic: Mild - Challenges with autism create social-emotional and sensory struggles but do not impact adult independence. Moderate - Autism can create some social-emotional and independent living challenges. In some cases, may live independently, in other cases will need ongoing support as an adult. Severe - Autistic conditions are such that the child has significant special needs. Daily caregiving is required through adulthood.

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.

Boy building a tower with blocks that have letters on them.
Getty Images

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).

2 categories of autism Diagnosis Infographic. 1. Challenges with communication and Social Interaction. Children have a difficult time connecting with others or predicting their reactions. Social cues, eye contact, and engaging in conversations are challenges. Children may have delayed speech, and may have challenges in muscle skills (playing sports, drawing, writing). 2. Restricted and Repetitive Patterns of Behavior. Children may exhibit rocking behavior, repetitive phrases, show discomfort at changing of routines. Children are often intensely focused on one subject, and exhibit sensory issues.
https://webmd.com/brain/autism/how-to-doctors-diagnose-autism

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.

]]>
https://understandingautism.info/what-is-autism-episode-2/feed/ 0 152
Who We Are https://understandingautism.info/who-we-are-episode-1/ https://understandingautism.info/who-we-are-episode-1/#comments Fri, 17 Mar 2023 21:45:30 +0000 https://understandingautism.info/?p=129 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 […]

The post Who We Are appeared first on Understanding Autism.

]]>
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.

This is a photo of Nicole doing a tree pose in 2009.
Nicole in 2009

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.

Here is a photo of Josh who is autistic with his older brother Brenden.
Josh with his older brother Brenden.

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.

The post Who We Are appeared first on Understanding Autism.

]]>
https://understandingautism.info/who-we-are-episode-1/feed/ 1 129