The repetitive movements. The lack of eye contact or failure to respond to simple questions. Outbursts that can become physical. For millions of families with loved ones on the autism spectrum, the behavior is all too familiar.
But through the eyes of a police officer or first responder, the signs can be confusing — or potentially threatening.
New York State, moving to address that communication gap, has begun issuing ID cards for people with intellectual or developmental disabilities that can be presented to law enforcement, firefighters and emergency services personnel to prevent these encounters from becoming dangerous for all involved.
The cards, which are free and voluntary for all families, contain standard information about a person — name, address, date of birth and emergency contact — and a disclaimer that the holder "may have difficulty understanding and following your directions or may become unable to respond."
"I may become physically agitated if you prompt me verbally or touch me or move too close to me," it continues. "I am not intentionally refusing to cooperate. I may need your assistance."
The back of the card can be personalized to a person's unique challenges. For example, it could give an instruction to law enforcement not to make sudden movements, to speak in a calm and reassuring voice or to shut off a police siren to avoid sensory overload.
Advocates say the cards are a great starting point but contend that many in law enforcement need extra training to properly react to the behavior of someone acting unpredictably — do they have autism and need help or are they intoxicated, high on drugs and potentially dangerous? During a stressful, sometimes life-or-death encounter, experts say there is no room for error.
'A valuable tool'
Fran Kerimian, 59, of Holtsville, has two sons, Tommy, 34, and Michael, 31, both considered “moderately challenged" on the autism spectrum.
She said the card may help first responders understand how to approach an incident thoughtfully, without jumping to a conclusion of criminal intent, and provides her with a sense of relief that her sons' needs will be better understood.
"The cards can be a valuable tool," Kerimian said. "If used at the right time, it might be very helpful in defusing a situation with law enforcement."
The ID cards are the product of legislation sponsored by Sen. Pamela Helming (R-Canandaigua) and Assemb. Angelo Santabarbara (D-Rotterdam), whose teenage son has autism. Gov. Andrew M. Cuomo signed the bill last year and instructed the Office for People With Developmental Disabilities to create the ID card and launch the program.
In the two weeks since the program began, the state has received more than 3,500 requests for ID cards, including roughly 500 from Long Island, said Jennifer O’Sullivan, spokeswoman for the Office for People With Developmental Disabilities.
Nationally, 1 in 59 children has a diagnosis of autism spectrum disorder, a brain development disorder, by age 8, according to the most recent data from the Centers for Disease Control and Prevention.
Unlike those with Down syndrome or cerebral palsy, who are immediately distinguishable based on physical characteristics, people with autism often look like "neurotypical" individuals without an intellectual or developmental disorder, experts say.
But their behavior can sometimes appear erratic, often if a routine is upset, and can manifest itself in a multitude of ways. For example, many autistic people manage bouts of anxiety in stressful situations by "stimming," or repeating a phrase or motion such as rocking back and forth or spinning.
Experts say it's critical that this self-stimulatory behavior is not misinterpreted.
"It's important to know these are not antecedents to problematic behavior," said Jason Watson, director of community engagement for Nassau Suffolk Services for Autism in Commack. "A law enforcement officer could think the person is intoxicated or intentionally ignoring their instructions."
Eye on training
Jeanette Stuart, 66, of Lake Ronkonkoma, whose son, Josh, 37, has autism, is still haunted by an incident several years ago at his residential group home in Ridge.
She said Josh had a bad reaction to a new medication and went into a rage, punching a staffer. A police officer responding to the scene, who was unfamiliar with Josh's disorder, used a stun gun to subdue him. Stuart doubts the ID cards would have helped de-escalate the situation.
"The cards would not have mattered," she said. "It's about training. And law enforcement needs more of it."
First responders generally agree that enhanced training is necessary to help understand how best to communicate with the special needs community.
Nassau County Police Commissioner Patrick Ryder said the department now requires 26 hours of mandatory mental health and disabilities training for new recruits, including a focus on autism awareness.
Ryder said his officers are trained to look for the nuanced signs that someone may have a developmental disability, such as a lack of eye contact or repetitive behavior.
"We teach [officers] to slow down and simplify things," Ryder said. "Try to put them in an environment that they feel most comfortable."
For more than a decade the department has maintained a registry of children and adults with cognitive disorders as part of its REACH program to aid law enforcement in the event the person goes missing. Participants are given ID cards and wristbands that make them easy to identify during interactions with police. To date, more than 1,000 Nassau residents have enrolled in the program.
In 2016, the Nassau County Emergency Medical Services Academy hosted its first training seminar to educate law enforcement on autism and other sensory problems. Among the training tools are how to look for autistic children who are reported missing and how to approach them if they are found.
"It's very easy for these situations to go wrong," said Frank Chester, chairman of the EMS Academy in Old Bethpage, who will host the fourth-annual seminar on May 6 in Bethpage. "At any moment, it could go the wrong way. We need to be very careful."
The communication gap can sometimes lead to heartbreaking results.
In 2013, Suffolk County police were called to a Middle Island group home after a resident, Dainell Simmons, 29, reportedly became agitated and violent. Officers used a stun gun, pepper spray and laid on top of Simmons, who was nonverbal, to subdue him. Simmons later died of asphyxiation.
Simmons' mother filed suit in federal court. Suffolk County denied its officers used excessive force or violated Simmons' rights, but it settled the case for $1.85 million.
In 2016, the Suffolk Police Department launched a sensitivity training program to teach officers how to respond to individuals with disabilities such as autism.
Lt. Steven Rohde, commanding officer of recruitment training for the Suffolk Police Academy, said new recruits receive 31 hours of mandatory mental health and disabilities training. Among the focuses: utilizing "people first" language that emphasize the person rather than the disability.
"You want to use calm, reassuring words," Rohde said. "There are verbal and nonverbal cues. What the officer does with his body can also have an effect."
Federal data show that people with disabilities are likely to interact, at some point, with first responders.
Justice Department statistics from 2011 to 2015 show that people with disabilities are victimized by violent crime at nearly three times the rate of those without disabilities.
And the FBI Law Enforcement Bulletin found in 2001 that people with developmental disabilities, including autism, have up to seven times more contact with law enforcement officers than other members of the population.
Advocates hope the ID cards can help make those interactions more productive, particularly during incidents when people with autism go missing.
"Their behavior can be a challenge and appear frightening if you don't realize they have a disability," said Brian Cabezas, managing director of adult day services at the Developmental Disabilities Institute in Nesconset. "But these cards could be valuable for safety reasons."
Skeptics question how autistic people will carry and present the ID card to law enforcement.
Wearing the card on a lanyard around their neck makes it more visible but could make them a target for an unscrupulous criminal, parents say. Carrying the card in a wallet makes more sense, they say, but some worry that a police officer could mistake a sudden movement into the pocket to pull out the ID for reaching for a gun.
"The ID card is an extra layer of protection," said Pamela Frank, 51, of Nesconset, whose 19-year-old son, Bobby, has autism. "But does it solve all of the problems? No it doesn't."
Bridget Cariello, 46, of Center Moriches, who works for a statewide organization that supports people with developmental disabilities, said the ID cards are a good "starting point" but must be augmented with proper training for first responders and input from people with autism and other developmental disabilities.
"These cards are a great first step," said Cariello, who has a 23-year-old son on the autism spectrum. "Now we need to make sure that first responders use the information respectfully and appropriately, and that our family members have the training and support to use them safely."