‘Different thinking is where progress and invention and discoveries lie.’ –Dr. Temple Grandin
April is Autism Awareness Month, an opportunity to celebrate the infinite prism that is the mind. By embedding a culture of Patient and Family-Centered Care at the UVM Medical Center, we now have the privilege of connecting with individuals who are generously willing to share their stories — even if it’s sometimes difficult to put into words.
We are grateful to learn from the experiences and perspectives of those who understand and think about and communicate with the world in a way that is different. We recently had the pleasure of sitting down with ‘J’, the daughter of one of our patient/family advisors, to talk about her Autism diagnosis:
J. is 15 years old and a high school freshman. She loves British Crime procedurals, anime, and all things Broadway. She has a wicked dry sense of humor, and a mouth like a sailor. She is also an Autist.
What are some things that you want neurotypical (‘nt’) people to know about your autism?
J: I’m slower with responding during conversations, you have to be patient. There are a bunch of rules to social interactions that don’t make sense. It makes connecting with people way too hard, which makes me not want to communicate.
Sometimes I have a hard time listening. Not because I don’t want to but because there is so much happening around me.
People are so judgmental. It’s hard to want to talk to people who are just going to point out when I mess the words up.
Neurotypical people touch each other A LOT. And stand really close. I really dislike talking to people, but that might just be me not autism.
What’s that all like out in the world: At school, the doctor’s office, at home?
J: School makes me tired. I don’t like being around so many people. Just so many bodies near me sucks out all my energy.
I can’t even remember the last time I went to the doctor. It’s just SO personal. It stresses me out thinking about it.
Home is OK, but the brothers are loud. It causes me anxiety, I have to leave the house and go for walks.
What can neurotypical folks do to better understand someone with Autism?
J: When I’m trying to take a break from people, don’t pursue me!
Stop with the puzzle pieces. I don’t have pieces missing, I’m not a thing to be figured out. I like the infinity sign, lots of possibility…
If you don’t understand what I mean, ask another way. Because I use words differently, sometimes we’re speaking different languages.
What’s cool about your autism?
J: I don’t know, I have nothing to compare it to…Autists are more imaginative.
Collaborating with patients and families elevates our commitment to providing a care environment that supports all individuals, including those with Autism. The video below is part of our work in sharing this knowledge across the organization.
To learn more about Patient and Family-Centered Care, and how to get involved, please contact Charlotte Safran at firstname.lastname@example.org or 802-999-9731.