THROUGH THE EYES OF EB

On February 3rd, 2024, Camp Encourage held its second annual “Through Our Eyes: A Panel of Autistics” at the Kauffman Foundation Conference Center in Kansas City, MO. One of the panelists, Elizabeth Boresow (lovingly known by many as “EB”) kindly shared her insightful answers and input. You’ll undoubtedly treasure her perspective and wisdom.

What does autism mean to you? How do you define it? 

It means how I take in and process information (both sensory and other information) is different from the neurotypical experience. It affects how I communicate and means my skills change more than many other people's do based on my environment and body. When I'm in a loud environment or if I feel stressed or angry, I may have less ability to process or use words than I would when I am calm or in a quiet space.

How do you feel about Person First Language? Do you prefer autistic adults or adults on the autism spectrum? Why? 

I often default to "on the spectrum" because it feels more neutral. I tend to use identity- first language for myself, saying I am autistic, more than saying I have autism, because the experience in my brain and body is so integrated with autism that I don't think they can be separated.

To learn more about the value of both person-first language and identity-first language - because they both have great value in the history of disability rights-check out Joe Shapiro's book No Pity: People with Disabilities Forging a New Civil Rights Movement.

I worry that autism-adjacent communities focus too much on differences of opinion around language to the point where it divides our community.

The person about whom you are speaking should get to choose how they identify (and when in doubt, use autistic or on the spectrum.

When did you first realize that you had different strengths/challenges than others? How did you handle this? How did your family handle this? 

When I went to elementary school, I saw differences emerge. Everybody felt the need to talk all the time. (Not me.) Everybody was good at talking. (Not me.) I loved school but the world was overwhelming so I kept my head down and stayed quiet and did my work. By late elementary school, my challenges with expressing myself verbally were more apparent and I handled this by choosing t-shirts with lots of letters so I could spell words with people who didn't fingerspell. I also started keeping paper and writing utensils in my pocket. I felt better when I had these resources right there.

At the advice of teachers, my parents had me evaluated for autism & they handled it different. My mom read everything she could. She advocated for school to support me AND recognize my strengths. My dad denied I had a disability but supported me by example. He knew I had trouble talking and related with people so at basketball practices, he treated me like everyone else and was good to my teammates and made them feel good so they were kind to me and likewise treated me like a teammate.

What advice would you give to parents of the newly diagnosed? 

You have the same child that you did before you received a diagnosis. They have the same likes & dislikes, quirks, and history that your pre-child diagnosis did.

A diagnosis offers you access to language to help you understand that your child and your family isn't the only one with this experience.

A diagnosis offers you access to resources and supports (through school, medical systems, and eventually the workplace).

I would say - go ahead and learn from folks who have shared their experiences. If you need a starting point, the handbook "Welcome to the Autistic Community” is a great place to start.

Congratulations on your diagnosis.

How did puberty/teen years affect you and what advice can you give families on coping with that time? 

Bodies changing is hard. Be patient and provide information about changing bodies. Be direct and know your child's learning style. Maybe having it written down or seeing pictures works better than a conversation. It might be that your kid gets pulled for speech therapy during sex ed. (Also, you should probably make sure that doesn't happen.)

Changing social expectations is confusing and hard. I remember the disappointment of knocking on my next-door-neighbor's door to play basketball like always and him telling me that he was a teenager now and he couldn't play with a girl and also he didn't play, he "hung out". Providing more information about that and problem-solving how to *do* social connections in these years can be helpful - if your teen wants that.

What have been your greatest sources of support on your journey so far? 

My parents were my greatest sources of support as a kid. They loved me, accepted me, and helped me grow.

Teachers and related service providers were huge sources of support as I navigated schools that got bigger and scarier. Teachers offered a safe break space and let me know they were glad I was in their class.

Friends have been a huge support in my "part-time" adult life. They help me problem- solve, understand the big systems, and continue to help me grow.

What is your biggest challenge in social settings and how do you cope with this? 

I don't have a visual memory-I'm the exact opposite of what Temple Grandin describes. I can't make any pictures in my head. This means I struggle to recognize people and my greatest strategy has been saying "I'm not great with recognizing people" and "Remind me your name". I can fake it really well in social settings that don't matter but sharing about this challenge has been most effective and inviting people to say who they are if they think I may not know (like we are in an unusual place to see each other).

My other big challenge is noise. When possible, I choose the less noisy option. Other strategies include asking if there's a room not used I can use for a break if needed, retreating to the bathroom for a break, or having an exit strategy for a ride out of a loud place. I use earplugs and noise-cancelling headphones and also like to wear a hat. It's usually backwards, but if I'm overwhelmed I can flip it and then pull the cap down low over my eyes so I have less stimulation coming in.

How has autism affected you in a workplace environment? 

I haven't had many traditional workplaces. Autism has affected my ability to interview and do a good "first impression". I have to choose either looking right (which feels uncomfortable) or dressing for comfort and then being better prepared to answer questions and demonstrate skills. I've never done well in a traditional interview.

I had an internship where I met with my supervisor regularly and got feedback that I was doing well. So well that I could take on more work, so I always did what I was told and put out what I believed to be a high-quality product. At the end of the year, I asked for a recommendation and the supervisor said she couldn't recommend me and "you know why" but I didn't. So I think sometimes not "reading between the lines" can impact interpersonal relationships or an ability to perform well if feedback isn't specific or requires reading between the lines.

How do you feel about dating/romantic relationships? What advice can you give? 

I was always told that I was just a "late bloomer" because I didn't have crushes or experience attraction. But here I am at 34, still not having any interest in romance and that is okay. I've learned it's called asexuality. For me, I'm glad - dating seems stressful and complicated.

A lot of folks on the spectrum want to date - don't assume they don't. But if they tell you they aren't interested, there may be something to that. Offer language around different experiences.

My number one piece of advice around dating is to teach and preach consent. You need to know you have the right to say yes or no to dating or romance or sex. You need to know you can change your mind. You also need to know that your partner (as in, whoever you are interacting with) has the right to say yes or no too and you need to listen to and respect that.

In my experience, autistic guys are persistent when I say no, I don't do dating. They take it personally and keep asking even if I say no, never, I don't do that. I wish consent was better taught at a younger age.

What is one thing you wish you would have known or been told growing up on the spectrum? 

I had to pick two:

1. It's okay to make your own life path. There's the big myth that everybody graduates high school, goes to college, gets a job, gets married, buys a house, has kids, retires. That's not actually how life works for everyone, that is okay, and you can do what makes more sense for you. 
2. Not everyone experiences or learns the same way. I learn explicitly, things need to be explained because I don't infer it. Apparently, others just infer things a lot. Because we all learn and experience things differently, it's okay to use different accommodations and strategies to navigate your life.

Immense thanks to Elizabeth “EB” Boresow for sharing her remarkable insights and experiences. Beyond measure, she is valuable, highly regarded, and the brightest of jewels. For information about attending future “Through Our Eyes” panels at Camp Encourage, be sure to visit https://campencourage.org/campfamilyevents for updates. Thanks to support from local foundations such as Kyle’s Gift and CPS Foundation, the panel is free to attend and typically takes place within the first quarter of each year.