Keeping Your Autistic Child Safe: The Unrivaled Value of Special Needs Registries

We have all been there. 

You’re stressed, you’re rushed, you’re tired.  You make a quick stop at your local supermarket for some groceries for dinner.  The store is packed.  It’s noisy and frantic.  Your autistic child is struggling.  He’s beginning to show signs of sensory overload.  You do your best to support him, but your cart is full, and you’re already in line to checkout.  You see the tell-tale signs of a meltdown barreling down on the most precious person in your life.  You just need to manage it and get to your car.  You pray.

You comfort him, reassure him, offer candy, soda, a toy- anything to make it to the car. 

It’s coming.

Fifty feet from the sanctuary of your SUV, it overtakes him.  He screams.  It feels like the entire world stops dead in its tracks to look at you both.  You try your best to ignore the stares and focus on your son. 

It’s here. 

He grabs the plastic bag of apples and throws it onto the parking lot pavement.  You helplessly watch them scatter and roll underneath the cars.  He grabs your arm and pinches.  A flare of pain fires up your biceps.  You try to keep soothing him, but you have to pull away.  You begin to cry, trying to summon all of your strength to get through this minute…

I have no magic parenting tips, techniques, or gimmicks.  In fact, if you have any, please forward them to me.  There are experts, parents, and specialists out there who have forgotten more about Autism than I will ever know.  I’m just a Dad trying his best to raise his autistic son (19 years old at the time of this publication).  I am grinding, like you.  I am devoted to my family, like you.  I’m scared, like you.

I’m also a retired cop. 

I’ve seen this scenario play out from the other side, and it scares me to my core.  Here’s how it happens:

A kind-hearted grandmother parks her car next to yours in the supermarket parking lot.  She gathers her purse, stack of coupons, and hand-written list of groceries.  Then, she sets out on her afternoon mission to stock up and find deals. She knows nothing about autism.

She hears your son scream.  He’s a big boy with a deep man’s voice. 

She turns and watches him toss a bag of apples all over the ground. He’s angry.  Violent, even!

She watches him grab you, pinch your arm, make you cry, and pull away in pain.  What a brute!

She does her neighborly duty.  She takes out her cell phone and dials 911. 

How do you think that call comes into the Emergency Dispatch Center?

“Middle-aged woman in the parking lot of Sam’s Groceries BEING ASSAULTED by a young man twice her size.”

How do you think that call gets dispatched to the Police Officers patrolling the area?

“Respond to the parking lot of 123 Main Street for a DOMESTIC ASSAULT IN PROGRESS.”

With what mindset do you think those responding Patrol Officers are arriving?

Listen, I know this is triggering.  I know this elicits emotions that paralyze the best of us with fear and anxiety.  I know this topic is scary and seems hopeless. 

It isn’t. 

I understand and respect the privacy arguments and reasoning against sharing vital personal information about your family.  I truly do.  These are among the most sensitive and important decisions parents and caretakers can make.  However, I believe it is beyond argument that, in the frightening scenario described above, the chances of a positive outcome increase dramatically if the responding officers become aware your son is autistic.  They increase exponentially if those responding officers learn this information at the very moment they receive the call along with vital insights into de-escalation strategies, special interests, sensory challenges and communication challenges specific and relevant to your son. 

Autistic individuals are SEVEN times more likely to have a police encounter.

In my 25-year law enforcement career, I have never seen a call for service go bad as a result of too much information.  It has NEVER happened.  However, I have seen hundreds of encounters turn sour- even tragic- due to too little information.

There are hundreds of excellent products on the market to consider conveying this critical information:  bracelets, clothing, stickers, seatbelt covers, shoe tags, ID cards (here is the link to mine).  As helpful as they are, each of these fall short when compared to a simple program that is probably available to your family right now at no cost: 

A Special Needs Registry.

Special Needs Registries- in some form- are now common to law enforcement and emergency service agencies across the country.  Some are technologically advanced, some are basic and rudimentary.  All, if deployed and maintained correctly, are more effective than any other form of identifying items or clothing.

What is a Special Needs Registry?

A Special Needs Registry is a voluntary, secure database of information about you or your loved one with Special Needs.  It is maintained and secured by your local, county, or state law enforcement agency and tied to the system through which emergency services are dispatched. A Special Needs Registry, of course, contains vital information such as name, date of birth, height, weight, and diagnosis.  But, if used and managed properly, it can be packed with additional CRITICAL information that might literally mean the difference between a positive outcome and tragedy.  

Some Special Needs Registries are very simple and old fashioned: comprised of sheets of paper in a file, or index cards in a box sitting on the desk of the Dispatcher.  Others are technologically advanced, living within the agency's CAD (Computer Assisted Dispatch) system and combined with other emergency data bases to include vital information such as your vehicle's registration.  These types of registries are the gold standard.  Here is a link to one of the best Special Needs Registries in the world.  It happens to reside in my home state, and my son happened to be the FIRST individual registered when it was rolled out years ago.  

To explain why this is a game-changer, let's revisit our opening scenario:

In the supermarket parking lot, our civic-minded and well-meaning grandmother will dial 911 to report an "assault in progress."  The Dispatcher receiving that call will gather as much information about the event as possible, including descriptions of the victim and suspect, license plate number of their vehicle, etc.  When the Dispatcher enters that information into the CAD system in preparation for dispatching officers, the system will scan the vehicle's registration for "flags."  If properly administered and maintained through a Special Needs Registry, one of these flags can be " Vehicle owner's son is diagnosed with Autism."  

That's valuable enough on its own.  However, the system can go deeper than that.  It can also alert responding officers that your son's name is Kyle.  He has sensory processing challenges and is triggered by loud noises, bright lights, and the smell of popcorn.  These challenges may result in overwhelm and lead to aggression or flight.  It can alert responding officers to possible de-escalation techniques and strategies as well as to his favorite sports, interests, and TV shows that may prove useful in redirecting and calming him.  The depth and scope of the information immediately and automatically communicated to responding emergency personnel is only limited by the individual supplying it:  YOU! 

Now, you may argue that you or your family will be there and available to supply this information to responding officers. 

What if you are incapacitated? 

What if you are emotionally taxed and unable to think clearly due to trauma and stress? 

What if the responding officers are too focused on physically controlling the scene (and your loved one) to listen?

Just like an emergency fire escape plan for your home, the time to prepare and organize is prior to, not during the crisis.

How can I find out if my city offers a Special Needs Registry?

Your first call should be to your local police department.  Nine times out of ten, they will be the agency in charge of maintaining the registry.  Often, you can find this information prominently on their website or social media pages.  There will be an officer or officers responsible for assisting you in filling out the necessary forms to join the registry.  Ask them TOUGH questions about their IT security, procedures, and protection of your sensitive data.  Again, this is a legitimate consideration.  

A wonderful byproduct of this process, by the way, is the interaction and establishment of a relationship with this Special Needs Registry liaison officer, which can be valuable in its own right and leveraged to pursue a broader relationship with more of your local police officers.

What information should I include?

A Special Needs Registry is only as reliable as the information entered.  Don't think like a parent, think like a cop. Information such as , "Kyle is a kind young man with a vivid imagination," is endearing, but not very valuable to a responding officer and takes up valuable digital real estate and bandwidth.  A much better entry would be:

Kyle has challenges with expressive language which often frustrates him, leading to anger. 

Speaking with a loud or angry tone of voice will only exacerbate the situation. 

Speak calmly and allow him to use his iPad to communicate. 

Ask him about Batman.

This type of information is solid gold for a responding officer, whose mind is principally on physical safety and controlling a chaotic scene. 

What if my city doesn't have an established Special Needs Registry?

Start one.  Seriously.  A Special Needs Registry costs practically nothing for an agency to implement.  All that is required is a motivated partner within the agency with a working knowledge of the CAD system to collect, gather, and store the data.  This is a valid and reasonable request with the ability to assist a broad spectrum of your community, including people with all forms of disabilities and medical challenges.  As a cost effective support tool for their personnel and a perfect community outreach vehicle, it's a no-brainer for your police department and emergency services.  With any new program or initiative, there may be hesitation at first.  But, I am confident that a well-organized and persistent effort will be able to persuade them of the merits. 

Do this for your family.  Do this for your local first responders.  Do this for your own peace of mind.