Conversation with Damon Kirsebom

In this seventh episode Ginny Grant begins by introducing the show and providing context about herself and Reframing Autism. Ginny then introduces Damon Kirsebom, who is a young Canadian nonspeaking Autistic advocate.  
 
In the conversation, Damon reflects on his journey from not having a reliable form of communication throughout his younger years to learning to communicate via a letterboard, then an iPad at the age of fourteen. He discusses his experiences of segregation, discrimination and isolation in high school and how these led him to develop an interest in advocacy. He also discusses some of the videos he created, sharing his experiences and insights to help others understand other nonspeaking Autistic people and improve the lives of nonspeakers. 

Transcript

[Music intro: ‘Winter is here’ by Elliot Middleton for Premiumbeat, a delicate piano melody which creates a hopeful mood]

Ginny: Hello and welcome to this episode of Amplified: Autistics in Conversation with Reframing Autism. 

I’m Ginny Grant, an Autistic advocate and Reframing Autism’s Communications Manager, and I am the host of this podcast. Today I’m thrilled to be conversing with a young Autistic advocate, Damon Kirsebom.

I’d like to start by acknowledging the Traditional Owners of the lands on which I’m recording this podcast today, the Gadigal people of the Eora nation. Reframing Autism extends our gratitude and respect to all Aboriginal and Torres Strait Islander peoples, and to all Elders past, present, and emerging, for their wisdom, their resilience, and for helping this Country to heal. 

For those of you who are new to this podcast series, Reframing Autism is an Australian-based not-for-profit organisation which is run by and for Autistic people and their families and allies. It is dedicated to creating a world in which the Autistic community is supported to achieve acceptance, inclusion and active citizenship. And we are all about nurturing and celebrating Autistic identity.

[Music continues briefly]

Welcome to Amplified, Damon. Would you like to introduce yourself to our audience? 

Damon: Hello, Ginny, thanks so much for having me here on Amplified! I’m Damon Kirsebom. I am 20 years old, and live near Vancouver, in British Columbia, Canada. I am someone who people would describe as “severely” Autistic; and, I imagine, as you hear my synthesised voice, you’ll correctly conclude that I am nonspeaking. For most of my life, I had no reliable means of communication, but now, I take every opportunity to speak what is in my mind. 

Ginny: Let’s start with your Autism journey. Could you tell us a bit about when and how you learned you are Autistic?

Damon: I was diagnosed with Autism a few months before my second birthday, and I was around three years old when I realised that generally, people were struggling to understand me, and how I was experiencing the world. I remember that I was attempting to communicate in the best way I could manage, but my attempts were usually misinterpreted. For example, I wanted to roughhouse with my dad and brother, but the unpredictable movements, sounds and smells would overwhelm me, and I would run away. 

It often appeared as though I was uninterested, or even oblivious to what was going on around me. People didn’t understand why I made humming noises in order to cope with overwhelming sensory environments, and they didn’t understand that the confusing sensory input I received made it nearly impossible to move as I intended. At home, my family generally honoured my preferences, but they were confused by much of my behaviour. They also didn’t realise how tuned in I actually was. The Autism professionals were well meaning, but they believed my behaviours were completely under my control, when the reality was that my sensory and motor difficulties ruled my life. 

In hindsight, it would have been such a relief if someone had said to me that they understood my sensory-motor difficulties! It would have given me such comfort if people had known that I could understand them, but that I simply couldn’t yet communicate my understanding. 

Ginny: So, how did your interest in Autistic advocacy develop?

Damon: I love this question! My interest in advocacy developed quite naturally, after I learned to spell out my thoughts. My negative experience in public high school is really what first prompted me to speak up. 

I had been in a segregated classroom with other nonspeaking Autistics, where I repetitively worked on very basic math and literacy skills which were many years beneath my level of understanding. 

Honestly, I was dying to know what was going on in typical Grade 10 classes. Once my communication was consistent on the iPad, I asked to attend social studies and science classes at grade level. 

While I was optimistic, my special education teacher was quite resistant. He declared that he would allow me to attend, but I would not receive academic credits for my work. I was determined to prove myself, and change his mind. Around the same time, I participated in educational testing which confirmed my suitability for grade level education courses. Unfortunately I needn’t have bothered. My special ed teacher looked for ways to prove I didn’t understand the courses, such as not allowing me to use my iPad for communication at school, and standing over me while I attempted to write my first test. He denied me the accommodations that would typically be available, such as extra time, practice using the test format, etc. This situation induced staggering anxiety. It was so devastating. 

What I didn’t realise at the time was that the teacher had already made up his mind about me, and the other students in our Autism classroom. In his mind, we could only grasp the simplest of concepts as though we were in a fixed state of never understanding.

I was pretty shocked when school administrators actually allowed this discrimination, without even considering my typing ability nor my educational testing results. 

So, fast-forward a little. When I left public school for a private setting, I had the opportunity to write a speech. I produced my first advocacy video, which is titled Education is a Human Right … Damon Kirsebom’s 2030 Project. 

It was cathartic, I must admit, to research education rights, and to reveal my discrimination experience. 

Anyway, after I released the video on YouTube, I was contacted by so many educators and parents! I presented the video and answered questions at an education conference and was asked to write a chapter in a book … which I did! 

So many opportunities sprung from my first little video, and I was struck by how receptive people were, and how many people I could reach. 

As soon as I learned to type, I began communicating with many, many other nonspeaking Autistics, and quickly realised that our experiences with sensory and movement challenges were so similar. This realisation blossomed into the idea that perhaps I could help spread the word about the ways in which so many nonspeaking Autistics generally experience the world. I began to produce videos which would help explain nonspeaking Autism. 

In 2019, I developed an autoimmune type condition, and this, paired with COVID-19, has definitely slowed down my plans, but I am determined to continue my advocacy. 

Ginny: In your short video A Metamorphosis you say “My life began quite suddenly in 2015 when I was 14 and a half years old.” Can you tell us about your journey from not having a reliable method of communication to learning to communicate via a letterboard, and eventually an iPad?

Damon: I am thrilled with my communication abilities now, but it would have been so much better a life if I’d had access when I was young. 

When I was a little boy, I received all the traditional interventions, as recommended by the team who diagnosed me with Autism. In my daily therapies, I earnestly played along, hoping I would eventually gain enough control of my mouth so that I could speak. I had so much difficulty demonstrating my understanding, as often I was directed to point to cards or objects, for example, but I could rarely do it quickly enough. Similarly, actions such as gestures, nodding yes or no, or even facial expressions were not accessible for me. I couldn’t easily coordinate my body to move in novel ways, and it was difficult to initiate motions. 

I must tell you, it was a helpless feeling. 

As I grew older, I found it more and more devastating to be thought of as someone who didn’t understand the world around me. I was offered picture cards which I was taught to trade for food items as this was meant to teach me a reason to communicate. It was frustrating, because I knew what the function of communication was, and often the items I was trained to ask for were not what I wanted. 

I was in a typical classroom prior to entering high school, and I loved the environment. While I could only rarely communicate my understanding, I made many friends, and was included in my class. I was present to listen to instructions on academic subjects and learned so much, even when I wasn’t demonstrating my knowledge. 

When I entered high school, however, I became increasingly frustrated. My communication had not progressed beyond simple requesting, and I began to feel as though my situation was hopeless. 

My mum asked for help, and was offered the solution of providing me with scripts I could say. It was unbelievably humiliating to repeat scripts which were heavily practised, and not what I wanted to say. Seriously, I was interested in politics and Bernie Sanders at the time, and I was stuck going back and forth with planned conversation about my favourite movie and whether I had a pet. 

People definitely meant well, but it was so hard to bear. I felt the weight of my situation like an anchor. 

When I was thirteen, my mum read the book Ido in Autismland by Ido Kedar, and everything changed. While my family had always believed I knew a lot more than I could demonstrate, they began to think of me as someone who simply couldn’t communicate, but could understand everything. 

I began to watch movies and read books which were directed at someone my age. The burden, then, was lifted in a way. I could feel an excited buzz in my house, and for the first time since I was a little boy, I felt truly hopeful. 

Within a year, I attended a workshop in which I learned to spell my thoughts on a simple letterboard. It was excruciatingly difficult!

Gradually I learned so much about controlling my impulsive movements, and slowing down my actions in order to point to letters and spell the words I wanted to say. 

I remember the moment when I realised, “hey, wait a minute, I can say anything I want!”, and I broke out of my lesson to tell my mum my epiphany. 

I began practising madly each day, and in a few months, I was able to type onto an iPad that was on a little stand on my desk. At the time, I felt as though I had been kidnapped, and was finally free. 

My newfound ability meant that, for the first time, I was able to weigh in on what was happening in my life. I took great pleasure in simple decisions, such as choosing my own clothes and books, eating what I really wanted, asking questions I had always wondered about, and choosing leisure activities. 

My world really expanded. I attended academic classes and made friends all over the world … most of them nonspeaking Autistics who learned to communicate as I did. 

I am pretty chatty now, but even I can’t find the words to adequately express how dramatically the ability to communicate has changed my life. 

Words are precious, and it is with good reason that communication is a human right … regardless of method. 

Ginny: Your short video Reframing “Severe” Autism has now been viewed more than 25,000 times on YouTube. What prompted you to create that video? 

Damon: I loved making Reframing “Severe” Autism. I actually put it together as part of a social presentation for an advocacy group I am part of called I-ASK, but at the same time, I planned to create something which I could widely release as an educational resource for parents, professionals, and for Autistics who are able to communicate through speech. 

I hoped to rewrite the way nonspeakers are so frequently portrayed as “tragic, violent burdens”. 

There is so much misinformation regarding what nonspeaking, or so-called “severe” Autism is, and I thought that perhaps I could help people who watched the video see aspects of their children, whether young or adult, in my descriptions of myself as I shared the core reasons for most of my confusing behaviours. 

I guess what I’m trying to do is to show how human I am, with the hope that other nonspeakers can be regarded this way, too. 

Without true understanding, nonspeaking Autistics are denied the types of supports and services which will actually help them participate and be included in society. 

Ginny: You participated in Communication First’s powerful 2021 short film LISTEN, made by and with many nonspeaking Autistic people. What do you want people to understand about nonspeaking Autistics and representation? 

Damon: Best question ever!

I will answer this by briefly sharing what I have learned in my research, and my interactions with so very many other nonspeaking Autistics. Here we go. 

Likely the most harmful misconception about nonspeaking Autistics is that we don’t understand the world around us. Truly, so often we’re spoken to as though we’re very young children. 

This misconception is widespread, despite research such as Michelle Dawson’s 2016 paper, which demonstrates that traditional IQ tests typically underestimate nonspeakers, sometimes by as much as 50 percentile points or more. 

From experience I can attest to the fact that when you are nonspeaking, people typically automatically assume you lack understanding. This leads to exclusion from full educational opportunities, and segregation from society. It also means abuse is more likely to occur. 

Okay, next up is the three core experiences nonspeaking Autistics have in common: 1) high levels of anxiety, 2) difficulty with sensory regulation, and with unreliable sensory feedback. This is what can lead to meltdowns, for example. 3) extreme movement challenges, which include difficulties starting actions, motor planning actions, sustaining actions and stopping actions. This terrible triad is what causes confusing behaviours, such as repeating words and phrases, humming, repetitive body movements, leaving the room, etc. 

It seems that most often, people are aware of gross and fine motor difficulties in Autism. They’re also aware of anxiety and sensory challenges. The trouble is, these symptoms, for lack of a better word, are overlooked in favour of a behavioural perspective of Autism. 

And, my final point regarding what I would like people to understand about nonspeaking Autistics: communication is of the highest priority, but anxiety, and sensory motor challenges, must be taken into consideration when attempting to access communication. 

With respect to representation, through my advocacy and research, I have found that nonspeakers have rarely had the opportunity to explain themselves … and thus, people have naturally formed a narrative which misses the mark, and can be harmful. These wrong assumptions have been repeated so often that they’re rarely challenged. 

Representation of nonspeaking Autistics, when it stems from our own experiences, will, for example, allow parents and professionals to understand the types of communication access and other supports which are most likely to improve the lives of nonspeakers. It will also enable researchers to form more relevant research questions, such as how to improve sensory and motor systems.

Ginny: In terms of the Autistic advocacy work you have done, what are you most proud of? 

Damon: I am happy to have participated in so many advocacy projects, and it’s difficult to say which I’m most proud of. 

To tell you the truth, though, my heart sings when I realised I have reached even one person … that they have reframed they way they previously thought about nonspeaking Autistics. 

I am so thrilled when I hear that a parent is working on alternative modes of communication, and believes their child can learn. 

I am always relieved when I hear that my words have resonated … and that people can see similarities in the nonspeaking Autistics they know in my descriptions of myself. 

For me, it means that progress is made, and that nonspeaking Autistics are more likely to gain access to communication, and take control of decisions which affect their lives. 

I am also so relieved to be collaborating with other Autistics. Truly, we’re in this together, and there are many speaking Autistics who have greatly elevated the voices of nonspeaking Autistics. 

All Autistics win when we support one other. 

Ginny: You recently completed your final high school academic course. You faced a lot of barriers getting to this point. What does this achievement mean to you? 

Damon: I am working on my final academic course, and must say, I have savoured every minute of my high school education. I have read books, from Jane Austen to Richard Wagamese, learned algebra and trigonometry, painted on canvas, and learned about photography, conducted scientific experiments and learned of Earth’s history. Pretty good for a guy who left a segregated classroom where I was working on sight words, basic addition and subtraction, and skills such as following directions to stand up, clap, turn around, etc. 

Actually, it’s difficult to express just how much this achievement means to me. High school graduation is a rite of passage … but it is something I couldn’t have dared to dream about before I learned to communicate. 

I am extremely grateful to have had the opportunity to break out as I did. Truly, great thanks must be extended to nonspeaking Autistics who went before me, like Ido Kedar, whose book changed my mum’s understanding of me. 

I hope that all nonspeaking people have the educational opportunities that I have been so fortunate to receive. Access to communication is, I believe, the only way this will occur. 

Ginny: In A Metamorphosis you say, “I reliably communicate. I am surrounded by supportive people, and guide my own future. This is what I hope for all nonspeaking autistics.” Tell us, what do you plan to do in the future? 

Damon: In a nutshell, I believe it is my mission to continue my advocacy work. I can’t imagine my life not centring around sharing the nonspeaking experience, weighing in on policy and supporting families who are navigating through a lot of confusing information. 

I definitely intend to continue my education, and am determined to gain greater control of my unruly body, through physical therapies. 

I would like to thank you so much, Ginny, for your thoughtful questions. I admire your work on Amplified, and really appreciate having been here, sharing my perspective. 

Ginny: Thank you so much, Damon. Thanks also to our audience for listening to this episode of Amplified. Please do tune in next time. 

If you’re not already part of our social media communities, please join us online. You can find us on Facebook, Instagram, LinkedIn, Twitter and YouTube. We also have a website – www.reframingautism.org.au – which has a treasure trove of Autistic-created resources.