This month we're asking our autistic community members What Do You Want? What Do You Need? We'll be featuring their answers all April long, right here. Today we're having a conversation with autistic advocate and parent Renée Salas. Please read, listen, and share.
I am Autistic, married and the parent of three awesomely Neurodivergent kids! I am a disability rights activist, author of Black and White: A Colorful Look at Life on the Autism Spectrum, blogger at srsalas.com, writer for Autism Parenting Magazine and contributor to other disability-related resources. I am a graduate of the Virginia Board for People with Disabilities Partners in Policymaking program, and the Community Liaison for the College of William and Mary Neurodiversity Working Group.
What are some things that make you happy? Why?
My kids. They have made my life infinitely better and I’m thankful for them every day. The greatest gift I’ve been given in life is to be able to see them grow and learn. To see them changing as they get older -- make choices, become more independent. It’s so very beautiful!
A distant second to my kids is water and, my lovely kids aside, it is my favorite thing -- especially the ocean. I love to be at the beach and could swim in the ocean for hours, and I do. I love the feel of sun on my skin and sand on my feet. And the sound! The sound of the surf is one of the most calming yet exhilarating sounds I’ve ever heard. And music, just about any kind makes me very happy. I love the way it makes me feel. Music moves me as if it permeates my skin and I can feel it inside and out. And then there is sunshine -- I love when it’s sunny. Weather has a great impact on how I’m feeling, and sunlight makes me glow, it makes me happy!
What are some things you avoid whenever possible? Why?
I tend to avoid social gatherings because I find them overstimulating. It’s impossible to find personal space at parties (especially when they’re not in your own home) and it’s extremely overwhelming to hear so many conversations at once mixed with music and all the other sounds that go along with it. I have difficulty filtering sound and when I’m overwhelmed, my sensory integration issues worsen: Lights become too bright, sound becomes too loud and touch becomes even more hypersensitive than usual.
Because of my sensory sensitivities I try to avoid fluorescent lighting, which is practically impossible because it’s everywhere. I try to eat at restaurants at ‘off times’ so they won’t be crowded. As much as I love movies, I rarely go to the theater anymore because the lighting (bright screen in a dark auditorium) hurts my eyes and makes me tense. Not to mention the sound is so loud it makes it almost painful to listen.
What features does your ideal living space have, and why?
Lots of windows to allow for natural light. Most artificial lighting bothers me, incandescent bulbs are ok, but if the glow is too yellow, it makes me extremely tired. The space has to be uncluttered and simply designed. While I appreciate fabrics, textures, patterns and colors, I can’t live with them. They’re too busy and make me extremely uncomfortable. I can’t sit in a room that has dueling patterns or colors that don’t work well together. I will actually avoid rooms that appear cluttered (too many knick knacks) or where the patterns are too busy. I also like high ceilings and lots of windows – I like to see as much of the outside as possible. I don’t like the feeling of being closed in. And I prefer rooms with two entrances and tend to avoid rooms where there is only one because I feel ‘trapped.’
What are your favorite books, movies, and/or TV shows?
My favorite books? That is extremely hard to say. I love to read! I was hyperlexic as a child so I read very young and with ease, but I didn’t comprehend what I read, so I hated it and avoided it whenever possible. It was extremely difficult having teachers tell me I wasn’t trying hard enough because they saw how easily I read yet I would answer questions about what I read incorrectly because I either didn’t comprehend or couldn’t remember what I had just read. As I got older, and comprehension did kick in, I read whatever I could get my hands on, usually two and three books at the same time finished in less than a week. Loved it! Three all-time favorite books: Pride and Prejudice, To Kill A Mockingbird, and The Shining. As for movies, I like a variety, except anything that’s too graphic, too intense, or just sad. When I see films like that, it’s like I absorb them. I don’t think I view them like most people. Scenes that are graphic/violent stay with me -- “once you see it you can’t unsee it” holds very true for me, and these pictures can stay with me for a long time. It was the same way when I was a child. TV I don’t really watch unless of course it’s football season, then I’m hooked!
What autistic experiences would you like to see more of, when it comes to storytelling efforts like books, movies, and/or TV shows?
Autistic characters being played by Autistic actors more would be nice. And how about some ‘regular’ people kind of roles? Doesn’t have to be the ‘super human genius’ or the character to be pitied. And definitely more non-speaking people! I would love to see alternate forms of communication getting more airtime. I can’t think of a movie or TV show that I’ve seen that has non-speaking people in it.
What are some things you'd like the media and other people to stop saying about autistic people?
Stop using functioning labels!! Stop referring to autism incorrectly as an illness, a disease, an affliction, a crisis, an epidemic … Stop calling us tragic, burdens to our family and to society, stop reporting that all Autistic people suffer. And stop using ‘Autism Awareness’ to point out what is ‘wrong’ with us.
Acceptance. Do away with these “Awareness” campaigns that are designed to shed light on what many non-Autistic people think is “wrong” with us. It has to be about Acceptance now. Stop trying to “cure” us, stop trying to make us not “look or act” Autistic. Accept us just as we are.