Wash. Providers Trained on EMS Response to Autistic Patients

Oct. 05--When Kari Sullivan's 14-year-old son, Nick, slipped and fell in the bathroom at summer camp this August, the experience she had with first responders was frustrating.

Nick, who has autism and difficulty communicating, couldn't relay what was wrong. The medics weren't able to diagnose him, and turned to Sullivan to decide how badly injured he was and whether it warranted a trip to the hospital.

"He wouldn't walk on his left leg, so I knew he was injured," Kari said.

Typically, her son masks minor injuries.

"Something was clearly different and wrong," she said.

The Vancouver resident said she felt that the medics should have been better at communicating with her and Nick to pinpoint the injury. They just didn't seem to understand how to work with someone who has autism. At one point, they even asked her if Nick did any "tricks."

On the way to the hospital, a medic told her that they didn't have training on ways to address people with developmental disabilities.

Turns out, Nick's hip was broken, so Kari said she was glad she followed her judgment. Her son underwent surgery to have plates and screws installed in his hip. The Mountain View High School freshman still uses a walker and wheelchair to help him get around.

Unhappy with her experience, Kari went to a recent workshop at the Camas Fire Department that addressed ways to deal with emergencies when your child has autism.

As autism rates continue rising, more emergency service agencies are having conversations about how to address the needs of people on the autism spectrum, as well as the needs and worries of parents and care providers.

"This is really an emerging issue," Bill Cannata told the handful of parents attending the workshop.

The retired Westwood, Mass., firefighter and Pensacola, Fla., police Sgt. Jimmy Donohoe are part of the Autism Society of America's Safe and Sound Task Force, an initiative started in 2005 that addresses emergency preparedness and prevention, risk management and general safety.

Wandering into water

The pair of speakers are also parents to children with autism. They've each experienced their share of scares, including one of the biggest concerns among the parents who attended the workshop: children going missing.

Half of all children with autism wander, Donohoe said, and they can get far in a short amount of time.

The twp suggested that if a child with autism goes missing, the parents should do a cursory search of the house before calling 911. A lot of parents, however, can tell immediately when their child has bolted from the house. Cannata said he realized that his son had left the house on a frigid 10-degree day in Boston because the door was wide open.

He followed his son's footprints in the snow and found him trying to get underneath a neighbor's pool cover.

Children with autism are particularly drawn to water, he added. Being immersed in water can be a soothing sensory experience for someone who's bombarded by stimulation all day. That said, drowning is the leading cause of death for those younger than 14 with autism.

Donohoe said that in Pensacola, the first instinct among local police when a child with autism goes missing is to check the water. It's important to think about where the child likes to go and what motivates them, he said.

He offered the example of a boy with autism who went missing in the woods in California. First responders learned that he loved Ozzy Osbourne, so they blasted his music, and the boy came walking out of the woods.

Trouble with talking

Autism Speaks estimates that up to 25 percent of people with autism are nonverbal, making communication difficult in a crisis.

The Pensacola Police Department maintains a database of children and adults who may have trouble communicating due to a disability. The database, called the Take Me Home Program, has a photo, physical description, emergency contacts and information about the person's disability. If they're found alone, officers can pull up the information and determine how to help them.

Clark County is considering a similar program, called Smart911. Battle Ground Police Chief Bob Richardson is part of a committee that discusses programs and other ways that local agencies can standardize response to emergencies involving someone with autism.

Monica Myer, board president of the Community Autism Network, started the group about a year ago after having a positive interaction with a Battle Ground police officer who responded when her 30-year-old son had a meltdown with a care provider. The committee comprises police, parents, social service providers and 911 dispatchers.

"You have to recognize what you're dealing with and respond appropriately," Richardson said. "We're trying to avoid some kind of confrontation where the officers get surprised."

An officer could see some of the behaviors of autism and believe that person is drunk or high. When a child with autism is "stimming" -- flapping arms, rocking, spinning, pacing-- it could be interpreted the wrong way, possibly as aggression toward the officer.

Donohoe said that if someone with autism repeats what a police officer says (a behavior known as echolalia), they might think they're mocking them or trying to dodge questions.

Ask too many questions at once without giving someone with autism time to process, and they might have a meltdown. To calm down, they could recite lines from a beloved movie.

All of this can seem strange to people unfamiliar with the disability's signs and symptoms, which manifest themselves differently in every person on the spectrum.

The work group, which tries to meet monthly, also talks about ways to make parents and care providers more aware of how officers do their job. Police may handcuff someone to get them under control. It's an officer safety issue, Richardson said, and parents should know it can happen.

Myer added that using first responders to de-escalate aggression can make a bad situation worse. Although they may need help, they might not need help from law enforcement.

Training

Myer led a two-hour autism training for Vancouver police officers in June during the weeklong crisis intervention training. It was the first time that the training included a lesson specifically on autism. Officers complete the 40-hour training once and then get two-hour refresher courses each year.

Clark County sheriff's deputies get four days of training each year, which makes it hard to cram everything in, said training Sgt. Tim Bieber. Although training has already been scheduled through the end of this year, Bieber said he plans to add a three-hour autism segment to the schedule in 2015.

"You don't want this stuff to fall through the cracks," he said.

A pair of sergeants got a taste of what that training might be like when Cannata and Donohoe held a second workshop geared toward first responders.

"There's two really completely different fronts that law enforcement have to take," said Clark County sheriff's Sgt. K.C. Kasberg, who went to the workshop.

If the person with autism is missing, it's about containing the area and finding them quickly, he said. If they're involved in a disturbance, police need to recognize their disability. With a background in search and rescue, Kasberg has prior autism training.

Only 10 people from police and fire agencies around Clark and Cowlitz counties went to the autism workshop. With busy schedules and low staffing levels, it's hard to find time for additional training, Kasberg said.

While not every officer is fully trained in recognizing and addressing autism, there's a lot parents can do to bridge the gap.

In an emergency, parents should give 911 dispatchers plenty of information about what they can expect, Kasberg said. This might include the child's likes and dislikes, what their behavior may look like.

Cannata recalled the story of a 14-year-old boy with autism who got hit by a car in New York while on his daily after-school walk to get a bagel. The boy, fixated on his routine, told medics that he was fine and needed a bagel -- ignoring his significant head injury. Children with autism will often mask injuries, Cannata said. The medics cut him a deal, saying if he went to the hospital first, they would get him his bagel. It worked.

Police also encourage families take part in their neighborhood association. Parents can let neighbors know about their child and meet the police officer who represents the neighborhood. In some cases, however, the uniforms that police and firefighters wear can scare children with autism.

A couple of years ago, a boy with autism went missing in the Salmon Creek area. First responders, setting up at a Shell station, learned that he would run and hide from first responders. When the boy's grandparents showed up, the boy came out of his hiding spot in the bushes across the street at KinderCare.

Cannata and Donohoe suggested having a meet-and-greet event in which those with autism can meet first responders in uniform. Seeing them put on turnout gear and bullet-proof vests can ease fears.

But an event such as that won't happen unless parents push for it, they said.

"If you don't fight for your child, it's just not going to happen," Donohoe added.

Sometimes, parents and care providers have to be one step ahead and prepared for a time when the child will be interacting with first responders on his or her own. Medical identification bracelets can help; so can disclosure cards, Cannata said. His son, who has difficulty communicating, keeps a card in his front pocket with information about himself and his disability. If an officer approaches him, he points to his pocket and pulls out the card. Cannata worked with his son to ensure he knows how to appropriately respond to emergency officials.

"It takes the drive of all of us parents to get things done," he said.

Copyright 2014 - The Columbian, Vancouver, Wash.