As a military family, the Hedleys have lived across Canada. Erik who has autism and his mother Teresa co-wrote a twenty-article series called “I Have Autism and I Need Your Help” for Autism Matters magazine. Teresa Hedley is an educator with a master’s degree in curriculum and instruction. She is also an author and the mother of three young adults. Her memoir, What’s Not Allowed? A Family Journey with Autism, narrates Erik’s autism journey. Themes around coping, thriving, and building resilience for autistic individuals are expressed through stories, vignettes, and retrospectives. Many of the Hedley family projects are related to military family support and sharing messages from their memoir.
Erik, at what age were you diagnosed with autism?
I was diagnosed with autism at age six, grade one, in British Columbia. Before that, in Halifax, my kindergarten teacher noticed that I was not joining class activities and that I seemed frightened and anxious at school. It was hard for me to figure out what I was supposed to be doing. I didn’t know what other people expected from me. I remember feeling upset and worried. My mom says I wasn’t like this at home. I used to run in circles and repeat the same thing again and again. I think I did this when I was excited about something or when I needed to understand something.
How has autism affected your life?
Autism has given me communication challenges and the need for me to have more downtime. I think having autism has made me have to work harder at being social and figuring out how to fit in. And this is tiring, which is why I need time alone to balance time with people. Fitting in seems easy for many people, but it’s not easy for me. I’m never sure how I’m expected to act. The unwritten rules and messages between people are hard for me to figure out. For me, it’s been something that I’ve had to continue to work to improve. I’ve taken many social skills classes. I think this has made me more self-aware. The more I know about myself, the more aware I can be to be better for next time.
How does autism make you unique and help you excel?
Autism makes me observant. I notice things like backlit leaves and shades of green and shadows, and I take pictures and videos of these things. I especially like change over time. I like noticing what has changed and what stays the same. That is something that fascinates me. I like to capture change over time using time lapse videography on my iPhone. For example, I made a video showing the afternoon changing into night and the sky losing colour and getting darker. I think noticing small details that many people don’t see is one thing that makes me unique. Another thing is my memory. My family comes to me for dates (like when we went on a certain vacation or when we moved) and names of people, places, and movies. I seem to remember these things easily.
What are some things that are hard for you?
The biggest challenge I’ve felt is difficulty adapting to sudden schedule changes. I like knowing what’s going to happen in advance and the steps involved and how it will all go. When things suddenly change, I find it hard to change the plan in my head. It can be difficult to go with the flow without much warning. But I’m working on this. One way is doing what we call a growth calendar. On a blank calendar page, I write down small things I did for the first time (like make plans on the phone) or how I met a challenge in a way that I could not have in the past. These are like milestones for me. At the end of the month or every few months, I review these calendar pages and celebrate my growth. I like having written proof of changes in me, even small ones. These growth moments inspire me to keep going and try new things.
What role has your family played in your autism journey?
My family has helped me with what I find challenging by thinking about things through my perspective. For example, when I was little, I loved the red circle rule signs which I called “what’s not allowed” signs. I was curious about what we weren’t supposed to be doing. My family knew I loved those signs, so they took hundreds of pictures of them and put them in little books for me. I have seven books filled with what’s not allowed signs. I remember that having these books and all the signs in one place was calming. I felt like I was organized having this collection. Some other examples of collections were provincial flags and also pictures of objects and their shadows.
Since I like nature, my mom decorated my bedroom in a jungle theme. When I came home from school, I dressed up in a silky green Peter Pan costume and pretended I was Jungle Boy. This helped me to settle down after a stressful or challenging school day. My bedroom was my calming comfort space.
Also, my family did something called “living out loud” for me. This means that they talked about what they were doing and why because most of the time, the reason wasn’t obvious to me. Like, “I’m holding the door open for Gramma because that’s polite and helpful for the person behind me.” By saying what they were doing and why, I could learn to copy their actions. Otherwise I might not have noticed.
Another thing is something we called “Latest Greatest.” My mom asked me and my brother and sister to choose something each month that we were proud of—maybe from school, maybe something we had made on our own at home or in the community—and we celebrated that favorite accomplishment by framing it and hanging it in the kitchen. We had three frames in a row like family art. We changed these each month. I loved seeing our work celebrated on the wall.
My sister Heather also invited me to be a part of her YouTube channel skits when we were teenagers. I was the videographer and filmed for her. Sometimes I would even dress up and become a character in her videos. I loved having these roles and discovering talents and skills I didn’t know I had. I also liked that my sister shared her film-making hobby with me.
My brother Scott taught me all about nutrition and healthy eating. I also learned the importance of sleep from him. He told me how our brains process our learning while we sleep.
The last thing I want to talk about is the article series that my mom and I wrote for Autism Matters magazine for six years, from 2012 to 2018. It was called “I Have Autism and I Need Your Help.” It started with an article for school and how my teachers can help me in the classroom and how things feel from my perspective. In other articles, we talked about how we met challenges at home like building my self-esteem…how to self-regulate…how to manage transitions. These are some examples. There were twenty themes altogether. I did the drawings for the articles to help show what each article was about. For me, helping to co-write these articles made me more self-aware of where I needed help and how to ask for it.
What is military lifestyle been like for you?
Change is hard and the military lifestyle is full of change. We moved every three or four years, sometimes right across the country. It can be hard to be in a new place with different people and having to adapt to that way of life. It takes a lot of energy to do that. It felt like just when we were getting into a routine and feeling settled, we would have to leave.
There is also a good side to moving. Change allows us to have different experiences and opportunities and also different chapters. This way, my life isn’t a blur of many years in one place. It’s like a collection of different stages for different ages. It is also an opportunity to explore different parts of Canada. Driving across Canada is an adventure each time. If my dad wasn’t in the military, I don’t think we would have explored the country as much as we have. I’m thankful for that.
How did your parents help you and your siblings transition to new homes?
I liked the way we were all part of the house hunting trip. We all got to vote on our new house. We used to go on the house hunting trips and write down what we liked or didn’t like about the houses we looked at. It felt like we were involved in the process. Also, we would make the house-hunting trip into an adventure, and do things that tourists do, like visiting Peggy’s Cove in Nova Scotia and Parliament Hill in Ottawa and the beaches on Vancouver Island. That made me excited about the next stage of my life.
I think when you try to see the good in things (like moving) your life gets more enriched.
Has your life been impacted by Coronavirus?
At the beginning of the pandemic, I felt like everyone else did but maybe I felt it even more. Predictability, certainty, routine and order are all important to me, and suddenly, we didn’t have any of that. I felt worried like everyone else did. That’s when my mom and I created a “Pandemic Battle Plan” with three columns: “Things I Know”…”Things I Might Be Feeling”…and “Things I Can Do.” This plan helped me to feel more in control and calmer. It was like a life ring.
Also, using Zoom became useful because we could still connect to many people all over the world at the same time, all from home. Sometimes hard situations create good opportunities because we have to think about things in a different way.
What are some of your goals and hopes for the future?
Right now, I have two co-op work positions. Three days a week, I work as an early childhood education assistant at a local daycare. I like the atmosphere at the daycare because it’s organized and visual and I know what I’m supposed to be doing. Also, the little children look up to me, and that makes me feel good. I like their fresh perspectives. Once a week I do maintenance at a seniors’ retirement home. That job is also structured, and I feel like I’m contributing. In both places I feel like I belong and that I am included. I also like that I can drive to each independently. That makes me feel like I’ve come a long way. In the future I would like to continue doing this and maybe eventually be paid for my work.
I would also like to make more social connections. I just signed up for a social club, and this is a good opportunity for me to maybe make new friends.
What five words best describe you to the world?
Hard-working, curious, kind, reliable, thoughtful.
Why are you interested in becoming an Autism Speaks Canada Ambassador?
I’ve been a self-advocate for the past ten years. I’ve done things like helping to write the magazine articles, speaking on Parliament Hill and being a part of Q & As about our family memoir. So being an advocate for Autism Speaks Canada feels natural to me.
What advice would you give to a young person, recently diagnosed with autism, wondering what the future holds for them?
I would tell a young person that you are who you choose to be. By this I mean it’s up to you to define yourself—not others to decide who you are. For me, I define myself as someone who is on the autism spectrum, and maybe because of this, I see lots of details each day like noticing what has changed from the day before, like more plants sprouting. I also see things that people don’t pay attention to like rule signs. When I was young, I loved the red circle signs with the lines through them telling us what’s not allowed. My advice would be to take something that you really like and share that interest with your family and friends. This is a way that they can understand you and what makes you feel good. And this is a way that you can define yourself, by what you like.
Register for My Autism Guide to get free access to resources curated for Military Families – endorsed and written by the Hedley family:
- Autism Guide for Military Families Autism Speaks Canada is proud to collaborate with the Canadian Military to understand the unique lifestyle of military families. Frequent relocations, absences from family when on assignment, risk of injury, illness, and death are realities of military life. These stressors can be heightened when families are also on the journey of supporting a loved one with a diagnosis of autism. This toolkit supports their dual journey and provides information and resources unique for military families with an autistic family member. We would like to thank True Patriot Love Foundation for funding this toolkit. We would also like to extend our special thanks to Military Family Services team and the contributing military members for helping develop this resource.
- On the Road Again: Planning a Smooth Move for Children with Diverse Needs | Families This article highlights that although change and upheaval is difficult for children with autism, military transfers can be tailored to each family, and they can even be fun—a family adventure. We do not hope for a successful move: we plan for it. The article describes the five steps that are part of each transfer and a handful of practical and effective strategies within each step. The result is a family toolkit and a smooth, safe move and transition into a new life chapter.
- Military Family Service video - The Hedley family: On caring for a child with autism – YouTube
- Military Family Resource Centre YouTube video – A Family Journey With Autism
- Military Family Resource Centre YouTube video - A Magic Carpet Ride
- Canadian Military Family Magazine - Military Spouse creates website for “Anyone curious about autism” – Canadian Military Family Magazine
- Find out more about Teresa and Erik’s autism advocacy projects at teresahedley.ca
Erik’s art appeared in Autism Ontario’s Autism Matters magazine from 2012-18 as part of Erik and Teresa’s article series, “I Have Autism and I Need Your Help.” The drawings illustrate the article themes and features the hand motif, representing support.