ID Cards and First Responder training in New York for DD

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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.

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.

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."

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."

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.

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.