Ethan Saylor, a 26-year-old with Down syndrome, had just finished watching “Zero Dark Thirty” at a Frederick movie theater on Jan. 12, 2013, when he tried to enter the theater for a second showing without buying another ticket.
Three off-duty Frederick County sheriff’s deputies, who were working security at the theater, struggled with Saylor as he refused to leave. Saylor suffered a fractured larynx during the confrontation and died of asphyxiation hours later.
Saylor’s death brought the treatment of individuals with intellectual and developmental disabilities into the national conversation and highlighted the need for increased training for first responders and law enforcement.
Autism FYI, a nonprofit based in Bowie, is one organization doing its part to raise awareness for people with autism, intellectual and developmental disorders and brain injuries.
Joyce Benjamin, Autism FYI’s COO and co-founder, briefed the Prince George’s County Council’s Health, Human Services and Public Safety (HHSPS) Committee during its July 18 meeting and shared some of the work the organization is doing locally and nationally to raise awareness.
According to data from the Centers for Disease Control and Prevention, one in 59 children has been identified with an autism spectrum disorder, up from about one in 150 in 2000. One in every 45 kids in Prince George’s County, a higher number than expected, have the disorder, Benjamin said.
Benjamin, who has two adult sons with autism, said she cannot explain why the numbers are increasing, although theories are ranging from vaccine injury to genetics. As a parent, she said, she reaches out for a reason to explain why it happens, although one has not yet been found.
“We don’t know whether it’s evolving, but as long as we can get our communities prepared and that’s just going to take education,” she said. “That’s what we’re here to do. We’re here to educate.”
As part of its education, Autism FYI created its Immediate Recognition Increases Safety (IRIS) program, which can help first responders identify people with autism who may need special considerations. Members are identified by a small logo, a yellow triangle with a black puzzle piece in the center, which can help them be better identified in case of emergency.
The program features free registration and access to a 24-hour hotline. The organization also sells a variety of other identifying accessories, including a USB bracelet that contains emergency information about the member, Benjamin said.
When someone registers with the program, Autism FYI sends a letter to the local police and fire department to let them know someone at that address has autism or Alzheimer’s disease, she said.
“Many of those with autism do not have language (skills), so that when an officer approaches them if they get anxious, then they become nonverbal completely, even if they have language,” Benjamin said.
She said they have also given decals to Prince George’s County Police that can help them recognize what to do when encountering someone with autism and can even help a nonverbal person with understanding his or her Miranda Rights.
“They want to please you, so they’re going to just say, ‘yes, yes,’ and you have no idea,” Benjamin said. “They’re going to tell you ‘yes’ for whatever. ‘Did you see? Did you take that thing?’ ‘Yes, I took that thing.’ You know, if that’s not what’s right, ‘Oh, no, I didn’t do that.’ So you’re getting an honest, legitimate answer from them can be difficult.”
Benjamin said Autism FYI has presented to the Department of Justice, members of Prince George’s County Public Schools and organizations around the state and country. Grants, product sales and donations through social media help fund the organization, Benjamin said, adding that they were hoping the county council could help increase their exposure and training.
Sydney Harrison, a District 9 council member, called Benjamin a champion of the community.
“It is very important that we all understand each other and understand some of – we all have challenges, you know – but they’re, they’re different in particular, but just being able to be educated about what those challenges are is very, very, very critical,” Harrison said.
HHSPS Legislative Officer Leroy Maddox said Autism FYI’s work can help prevent some of the dangers that come with the public safety community not understanding people with disabilities, such as in the death of Ethan Saylor.
“It really does yield benefits,” he said.