Cheryl Smith says sometimes just going to a convenience store with her son can be a challenge.
Her son, Carson, who turns 23 in a few weeks, is 6 feet tall, weighs 300 pounds and ranks high on the autism scale. During a recent store visit, he put his head under a fountain drink machine to drink out of it, opened a bag of chips in the store, took a drink of coffee which he didn't like and poured it out, and then took a bite out of an apple at the counter before putting it back in its display area.
"This is all in a 15-minute time period. So the first thing I do as a parent is I go over to the cashier and say, 'I got this. Whatever is happening here, I got it.' Because my worst nightmare is she'll call the cops and they'll come and they won't know what to do. I don't even know what to do, so how can I expect them to know what to do?" Smith said.
In the end, the cashier — who also has a relative with autism — was understanding. And the police were not called.
But sometimes Carson can become aggressive. He has had reconstructive surgery for biting the skin off his hands, his mother said. She has had to get stitches on three different occasions after being bitten by her son.
Despite that, the last thing she wants to do is call police.
"Are they going to come tase our kid, or shoot our kid, or arrest our kid?" she said, explaining that is the fear some parents with autistic children have.
But Smith is not anti-police. In fact, she fully supports law enforcement. That's why the long-time autism advocate helped develop the new training program that all new police officers in Utah will now be required to take.
New Utah law
Utah lawmakers approved HB334 during this past legislative session, which deals with special needs training for law enforcers.
"This bill requires peace officer training to include training on autism spectrum disorder and other mental illnesses," according to the bill.
The law went into effect on May 5. In preparation for the bill's signing, at the quarterly Peace Officer Standards and Training Council meeting in March, it approved a motion that requires all new police cadets to receive three hours of autism education during their basic training, in addition to other mental health training that is already required.
"This was a really good bill," council director Major Scott Stephenson said of HB334, while adding that the training is needed because officers are "dealing with individuals we just don't understand."
Approximately 1 in 54 children are diagnosed with autism in Utah, and the state ranks third in the nation in states with autism prevalence, Smith said, “It really is a matter of when, not if” an officer will come in contact with a person with autism.
Smith is the former president of the Autism Council of Utah and today teaches instructional classes to local police departments as well as to the Utah Attorney General's Office. Since 2005, the Carson Smith Special Needs Scholarship Program has been helping students with special needs receive private school vouchers.
The effort to get legislators to change the law to require more autism training was already in motion when a Salt Lake police officer shot 13-year-old Linden Cameron on Sept. 4 as he ran from them in the area of 500 South and Navajo Street (1335 West). Linden had been acting out that day and his mother — who was exhausted and felt like she was out of options — called police asking for members of the Crisis Intervention Team to respond.
Linden survived the shooting but is still recovering from physical and psychological injuries today. A decision by the Salt Lake County District Attorney's Office about whether the shooting was legally justified is still pending.
Smith said a shooting like that is the worst fear of parents with autistic children.
"It's horrible that it happened. But I also feel like it was horrible for that officer. I don't think that officers go out and think, 'Oh, who can I shoot today?' So it was awful for everybody," she said.
Sadly, however, she said that incident also gave a needed boost to efforts to pass the autism training bill in the Utah Legislature as lawmakers recognized the need for change. She hopes the training will eliminate negative experiences that autistic families may have with police.
During the three-hour course, officers will not be trained on how to make a diagnosis that someone has autism. Rather, the goal of the training is to give officers the tools to recognize that the odd behavior someone is exhibiting may not be due to that person being high on drugs or deliberately disobeying an officer's commands, and how an officer can react to that situation.
"What I want to do in my training is show the difference between criminal activity and autism and mental illness and give them the tools they need to de-escalate the situation," Smith said. "At least in these three hours, we can give them the basic tools that they need to de-escalate a situation and, not diagnose, but determine the difference between what's going on."
One of the big takeaways from the training, Smith said, is that officers should not rush in.
"The biggest thing they can do is slow it down and not charge in and touch," she said. "Don't get in their face. The kids go 'fight or flight' because they hate to be touched.
"That's what cops are trained to do is to get in and take care of the situation. So this is a really different way to approach," she said.
As part of the training, Smith shows body camera videos collected in other states from officers who have had contact with autistic people. During one training session, Smith showed officers an example of an autistic person who was stimming, or making repetitive motions. Stimming could involve an autistic person flapping their hands, flicking their fingers, rocking back and forth or playing with their lips with their fingers. While at first it may appear the person is on drugs, these are all calming methods for an autistic person, she said.
"Oh, I've seen that, but I didn't know what that was," one officer told her during a training session.
Officers are also trained to speak slowly, softly and use short and concise sentences and not abstract sayings such as, "Cut it out" or "Knock it off" when dealing with an autistic person. If an officer fires off several questions in rapid succession, such as, "What's your name? What are you doing? Where are you going?" a person with autism will still be stuck on processing the first question before the officer is even done talking.
Smith has made cards officers can put in their wallets that give bullet point reminders of what to do if the officer comes across a person suspected of having autism.
"Slowing down is the big one to assess the situation. Approach quietly. Talk slowly. Allow time for them to process," Smith said, reading the points.
Other reminders on the card include seeking more information before taking action and maintaining a safe distance to allow room to retreat should the officer need to.
Officers ‘hungry’ for training
"It's not rocket science. It really is just a different mindset because they're trained as officers to get in, get in there fast and take care of the situation. What we're telling them is totally opposite from all of that," she said.
The training also includes putting officers in a difficult situation to give them a sense of what it's like when an autistic person tries to process information. Smith has officers attach pieces of steel wool to the back of their necks while a loud, annoying noise is played and people repeatedly yell at the officer, who is then given a quiz and told he or she must complete it in one minute.
Smith was offering her training course to police departments at no cost before HB334 passed. She said officers are "hungry" for the training.
"I've been doing a lot of these, and they don't ever act like, 'Oh, I have to go to this,'" she said, using a begrudging voice. "They want to know. Nobody wants to fail. … They're glad to have the tools for a positive outcome."
Several police departments across the valley anxious for autism training also didn't wait for the law to take effect. In Herriman, the police department recently scheduled a service training focusing on autism.
"Every officer from the chief down to the newest guy attended the course," said Herriman police officer Zach Adams, adding that not one of them felt they were being dragged into a training they didn't want to attend.
"It was really beneficial," he said, calling it the department's favorite training session.
The class was taught by Natalie Castro, an autism awareness advocate who founded Pieces of Inspiration because of her sister Angie, who has autism. All of Riverton's police officers received the same training in the fall.
Adams said officers were trained on how to interact and engage with people on the autism spectrum and recognize traits such as stimming. Officers also learned how some autistic people are nonverbal and how they can be adversely affected by sensory input, such as bright lights or loud noises.
"It's huge for us to understand (autism)," he said. "Mental health is an issue we deal with on a daily basis. The better trained we are, the better prepared we are."
To further help police in their dealings with autistic and mentally ill people, Unified police recently partnered with other law enforcement agencies involved in Project Safeguard. The program creates a database that allows family members to register their loved ones who have conditions such as autism, dementia, Alzheimer's or some other mental disability.
Emergency dispatchers will be able to pull that information up on their computer screens before an officer arrives at a scene, said Unified Police Sgt. Melody Cutler. That way, an officer already knows if they are dealing with a person with a mental illness and has information such as what that person's trigger points are.
"Sometimes you don't know why a person is behaving a certain way, and if you already have that knowledge, it can help in how you respond," she said. "Knowing that information in advance versus coming across someone who is not complying because they just don't want to, will help us respond in a much different way."
But Smith also says that having autism does not give that person a free pass to break the law. For example, some high-functioning autistic people are able to drive. But sometimes when they are pulled over, they become afraid and can't speak.
"Just because they have autism doesn't mean they shouldn't get a ticket," she said. "Just because you have autism doesn't get you off the hook, necessarily. But it might be handled a different way altogether."
The gray area is what happens when an autistic person commits a crime but doesn't understand it was wrong. Smith gave an example of an autistic boy who was challenged by others to take a cash tip left off a table in a restaurant and then later patted a girl on her butt. The problem is the autistic boy wasn't able to comprehend whether the others in the group were being sarcastic or just joking with him when issuing their challenge. she said.
Smith said during training, she will ask officers if they would ask a person in a wheelchair to walk to them. The obvious answer is, "No."
"Well, it's just like that when you ask this kid to do something they can't. They just can't see it. It's really hard to internalize that. But they cannot do certain things because of their brain makeup," she said.
An autistic person can't be expected to not do something simply because it's "obviously wrong" or be put in jail when that person doesn't even understand what the arresting officer is talking about, Smith said. That's why Smith's next challenge is to work for reform in the juvenile justice system and to help train attorneys and judges about how to deal with autistic people.