Autism Acceptance in South Carolina – An interview with our Autistic Team Member
Every April is Autism Acceptance Month, a celebration that is near and dear to our hearts here at Bright Start, because many of the children, families and individuals we serve everyday around South Carolina have received an Autism diagnosis. We feel so fortunate to serve this community, and it is particularly meaningful to us, because in addition, we have first-hand experience with Autism through the eyes of our staff.
In this post, we are joined by one of our Bright Start team members, who received her own Autism diagnosis later in life as a young adult, and now serves as a valuable Case Manager for many of our families. In celebration of this month, she kindly allowed us to interview her about such a personal aspect of her life and offer insight into the autism community. Keep reading to learn what she has to say about this special month of Autism Acceptance.
Autism Acceptance vs. Autism Awareness
The terminology has changed in recent years – from “autism awareness” originally, now to “autism acceptance.” Does that hold any special meaning for you?
“It’s really exciting to see the terminology changing, because it indicates that we are starting to really listen to autistic people, and listening to the movement. Because the thing with awareness, versus acceptance, is that you can be aware of autism – yet still be a bully. You can be aware that a person is autistic, and still look down on them for their behaviors. By celebrating autism acceptance instead, it means we’re not only aware of autism and what it looks like, but more importantly, we’re deeply accepting those behaviors and valuing those people for who they are. That’s why the terminology is so important.
Autism Acceptance Month is about celebrating autistic traits. It’s about celebrating the different ways that autistic people communicate, and validating all of those.
A Personal Look At Autism
That’s a perfect intro to this topic. Can you tell us a little about your personal story?
I am autistic, but I was not diagnosed until I was 18. That’s really late compared to a typical diagnosis. Ideally, we want to diagnose autistic kids before the age of five. There were a lot of reasons why I wasn’t diagnosed until later in life. Part of it is that I was naturally very good at school growing up. So I went through elementary, middle, and high school without a lot of problems. I was in the honors programs, and AP classes, and so on.
So for me, it wasn’t until I got to college, when things became really difficult. In my freshman year of college, I was really struggling with basic everyday cognitive function skills. So getting to class on time, eating good meals, or eating regularly for that matter – I would get so unconsciously absorbed with what I was doing that I would truly forget to eat. These signs are common with autistic folks – getting caught up in an activity and then not feeling able or even wanting to do anything else until that activity is fully 100% over. These things became increasingly difficult, and were further complicated by living alone, and social aspects that come with college. Over time, we identified these symptoms and landed on autism.
How did being diagnosed with autism in college affect you at that age?
Honestly, it was really, really hard at first, for a lot of different reasons. When I finally got the diagnosis and was told, “You know what, Abby, you have autism,” – when I first heard that my initial reaction in my gut was, “My life is over. My hopes and my dreams are no longer possible. With this diagnosis, I can’t do anything, ” which is a terribly negative outlook.
But unfortunately, I think it’s also an outlook that is easily portrayed by our society, where having any sort of disability is this overwhelmingly negative thing. I literally remember one of my college psychology professors describing autism as “a sad and tragic disorder.”
But I began researching. I began reading autistic blogs, joining Facebook groups, anything I could find that showed me what autistic people were actually saying about autism themselves. I didn’t really care about what therapists, or parents, or support professionals were saying. I wanted to know what actually autistic people were saying. And that’s what really opened my eyes and changed my perspective. I realized this would not mean I can’t go on and achieve what I want to do, and have a successful career, and have meaningful relationships. Autism doesn’t prevent you having any of those. It just means you are going to go about it in a unique and different way.
The Challenges & Strengths of Autism
How cool – the idea that every human overcomes challenges, each in their own unique ways. Can you tell us more about that?
So, there’s a fun saying in the community that says, “When you’ve met one autistic person, you’ve met… one autistic person.” It’s very true, because it really varies from person to person.
For me, I think my challenges are definitely sensory. I am very sensitive to noise and smells, so even going to the grocery store or being out in public can be extremely overstimulating very quickly. Unlike those of us who are neurodivergent, such as autistic, ADHD, Tourettes, etc., those with a neurotypical brain have a strong ability to filter out context noise that is irrelevant, but the autistic brain is often unable to do that.
So when I walk into a grocery store, or when I’m in a coffee shop and I’m talking to someone, I don’t just hear our conversation. I hear every other person’s conversation too. I hear the clinking of coffee cups. I hear the walking, and the tapping of feet. I hear every single noise stimulation at the same level, whereas a neurotypical brain is able to screen out the excess environmental noise.
And then there is stimming. So stimming are the self-regulatory behaviors of autistic people, ways of coping with overwhelm and overstimulation. I developed stims in ways that are very subtle. For instance, I move my feet a lot – that’s one way I stim. Even in high school, I remember choosing what shoes I was going to wear based off of how obvious or not it would be if I was stimming with my feet and toes. Tennis shoes, versus sandals, were common for me because in tennis shoes, if I’m moving my toes up and down constantly to help process my environment, you can’t tell. But in sandals, you would.
So we’ve covered the challenges of your diagnosis – what other factors are there?
Well, on the strengths side of the situation, I am incredibly organized. I think autism actually plays a really big role in that. And I have an amazing ability to focus. So if I start something, I am not walking away until it’s completely done. So I can start a project for work or school, and if that project takes me four hours, I will be sitting there and working for four hours straight, ignoring the rest of the world. I don’t want to stop it and pick it back up later. I want to finish it, and that focus really comes in handy.
I also think being autistic has put me in a very unique position to advocate both for myself, for others in the community, and especially for the families and individuals I serve through Bright Start. The way that my autism presents is subtle, and I would consider myself pretty well spoken, which helps me immensely as an advocate. For a lot of other autistic people, that’s not where their strengths lie. So it’s something I’m very grateful for, yet my brain is wired differently, which brings a unique perspective to the table in almost every area of life – that’s a valuable piece also.
I think by working with families through Bright Start, and having so many people on my caseload who are autistic, I’m seeing a very wide range of the autistic spectrum. When you hear spectrum, it’s easy to think of a straight line, but I like to think of it as a circle. Within that circle are all the possible autistic traits, and every single autistic person’s circle looks different. We’re all “in the autism circle”, but each person has their own makeup of what that means, how it presents, and the strengths and challenges associated with it.
All in all, it just really helps me connect with many of the families. I’m not always public about my own diagnosis, it just depends on if it’s relevant and aids my work. But I have had a child on my caseload whose mother I told right off the bat. The mom was so excited and encouraged.
Listening To The Autisic Community
Incredible. Anything else you’d like to be sure we cover in our story?
I think the biggest thing is just listening to the autistic community. A hashtag that’s really popular with us is #notaboutuswithoutus. This rings true for any disability. It’s easy for society to try and think for and speak for the disabled community, all while excluding disabled individuals from the conversation. If autistic people are not in the room and unable to provide input – progress that truly represents our perspective will be nearly impossible to achieve.
And I’ll also say that Bright Start has been amazingly accommodating as a company and employer. The flexible schedules available is a great benefit to all Case Manager employees, and especially for someone like me with a disability. It is rare to find a company that is so naturally thoughtful in its mission and vision, to the point where I have never had to seek out any extra or additional accommodations for my disability. I am very grateful to be working here.
Wow, thank you so much for taking the time to talk with us today, Abby. This conversation has been truly informative and I know that our audience is going to greatly benefit from this.
Awesome, yeah of course!
Learn more about Autism in SC
What a powerful and deeply informative conversation! If you’d like more information about Autism Acceptance Month this April or learn more about the topic in general, we encourage you to visit the Autism Society or the Autistic Self Advocacy Network.
As always, if you, your child, a loved one, or a friend need guidance in navigating the world of autism in South Carolina, our team at Bright Start is happy to connect you to local resources and available services around the state, because these opportunities are often lesser known, underutilized, and sometimes complex to navigate. Throughout, our goal is to serve through constant coaching, encouragement, and enabling your own self-advocacy.