“It is a spectrum, and if you’ve met one person on the autism spectrum, you’ve met one person on the autism spectrum,” said autism advocate Erin Clemens.
Clemens was evaluated for autism in the sixth grade, but she didn’t fit the stereotype at the time, and it was dismissed. Fast forward to the 10th grade, she said her struggles became more visible, and she was officially diagnosed around 2005-2006.
Clemens said she was dismissed because little was known about the disorder at the time.
“When they (the school) started helping me, I was like, ‘well, what changed?’” Clemens said. “I didn’t change, but the awareness of this diagnosis changed for others, and when that happened, I’m like, I need to make sure this doesn’t happen to other people, because it shouldn’t have happened to me in the first place.”
Clemens said she wanted to be the person she needed when she was younger. Originally from the Philadelphia area, she started sharing her story on a blog and through social media, just talking about her everyday life, and people started listening.
Fast forward years later, and Clemens has a book, a TED Talk and she has done several interviews for news outlets.
“My disclaimer is that I only speak for myself,” she said. “I cannot speak for anybody else, but I do hope that by sharing my experiences, I might be able to help others kind of understand how they could apply what’s helped me to other people as well.”
Clemens built a network of people in Philadelphia, and that is where she found her community. She moved to Erlanger about a year ago and has since worked to do the same in Northern Kentucky.
One way Clemens raises awareness about autism is by setting up a table with a banner that reads, “I have autism.” She isn’t selling anything or trying to get anyone to sign up for something. She just wants to share her story and have a conversation.
Some of the places Clemens has set up her table are Erlanger Methodist Church and Maverick Chocolate Co. in Findlay Market. She has also done presentations for organizations like The Point Arc, based in Covington and at the Erlanger branch of the Kenton County Public Library.
“Sometimes nobody wants to come up and talk, and I think that’s probably because maybe they think I’m selling something,” Clemens said. “Maybe they think I’m trying to get info, or trying to ask for donations. I’m not doing any of that. Or maybe they just don’t know what it’s about and don’t really understand it. But that’s why it’s there, is to just kind of be in their face and say, ‘Hey, this exists, and I’m part of it.’”
Clemens said she has struggled to get a “yes” from businesses or organizations that will let her set up her table. Or it will be a one-and-done situation. Anyone who wants to connect with Clemens can email her at AspergerSadie@gmail.com.
One organization that Clemens has worked with since coming to the area is Kentucky Autism Training Center, based in Louisville but serving all of the commonwealth. Clemens was a panelist for the training center’s educator conference, where she talked about her experience as a person with autism.
The Kentucky Autism Training Center works to improve the quality of life for people with autism across all stages of life in Kentucky.
Tracy Belfield is the field training coordinator for the organization’s Western Kentucky branch. The 51-year-old said that back when she was in school, the word autism wasn’t even in her vocabular.
“Now it’s kind of everywhere,” Belfield said. “It’s in TV shows, it’s in media. It’s obviously all over TikTok and all the social media platforms. I think our awareness of autism has definitely just grown. But also the DSM (Diagnostic and Statistical Manual of Mental Disorders) has kind of widened.”
Belfield said that in the day-to-day, to show support for people with autism, you can presume competence and potential. She also reiterated Clemens’ point that once you’ve met one person with autism, you’ve only met one person with autism.
“I have a lot of people asking, ‘how do I get this person to do this or to stop doing this?’” Clemens said. “I say, ‘well, why? What is your goal of doing that? Or, telling them not to stim. Or, telling them that they need to be quiet, and they’re like, well, ‘because I want them to be able to function in society,’ and I guess they’re looking for ‘normal,’ and I’m going, ‘Why?’”
One resource provided by Kentucky Autism Training Center is its Caregiver Summit, coming to Florence May 8-9. The Friday night session includes resource roundtables to provide parents and caregivers with information they may not be aware of. Dinner is also provided, a time when parents can talk with one another about their experiences. The Saturday session starts with breakfast and then moves into a keynote speaker. More information on that can be found here.
Becky Stenger, owner of We Rock the Spectrum, a kids gym in Erlanger, is the parent of a child with autism. The gym has playground equipment that can be used therapeutically or to address sensory needs, and all kids are welcome.
Stenger said We Rock is a place where people never have to say, “I’m sorry.”
“As a mom of an autistic child, I really resonated with that because when we would go to playgrounds or even like trampoline parks or other things like that, my daughter doesn’t always understand other people’s personal space and things like that. So I felt like I was constantly running behind her, apologizing to people.”
She said the gym allows families to experience different needs that other kids may have. Similarly to Belfield, Stenger, who is in her 40s, said she also did not have a lot of experience in school with people who have autism or special needs.
World Autism Awareness or Acceptance Day is April 2.
“Really, for me, I like to think that Autism Awareness or Acceptance Day is really kind of opening that communication up so that hopefully in the future, it’s not uncommon, and people aren’t as surprised by things,” Stenger said.
Clemens connected with Stenger and gave a presentation at the gym about her experiences as someone with autism. Stenger said autism awareness is important to keep talking about because it’s not going away.
“When the whole community is educated, then we’re able to support the individuals more completely and understand and accept that that’s just who they are,” Belfield said.
