The 'Autism tsunami'
By Joel Lashley
'Autism tsunami': 1 in 150 births are currently on the autism spectrum; 3 out of 4 are male; half are nonverbal or profoundly verbally limited. They are seven times more likely to encounter the police than a person who is not diagnosed with an Autism Spectrum Disorder (ASD).
Driven by the natural desire to connect with their sons and daughters with autism, parents work tirelessly to communicate, mostly through trial and error. When my autistic son was growing up, this trial and error was just about all we had to rely on. But now things are swiftly approaching a critical mass. Parents of "the first wave" are trying to pass on what we've learned to the next generation of mothers and fathers — as well as the police and corrections officers who will undoubtedly come into contact with autistic people, and for whom mental health and autism training is increasingly critical.
Autism is a Greek derivation meaning "state of being alone." (Pat Rogers, Children's Hospital of Wisconsin)
By "first wave" I am referring to the massive increase of young adults with autism; a statistical wave created by what appears to be a perfect storm scenario of concurrent contributing factors, including increased diagnoses, increased incidence of autism, over-taxed and drying up community resources and a maturing front-line demographic of individuals with autism.
Just last May, I was invited by NEMRT (North East Multi-Regional Training) to attend a police instructor certification training seminar called "Autism Awareness and Roll Call Briefing Trainer" in Chicago. The State of Illinois has wisely joined Indiana and Kentucky in requiring autism awareness and related subject control training for its sworn law enforcement personnel. The conference was well attended by academy instructors and police crisis intervention team members, of the Chicago Police Department and various other police instructors from throughout Illinois.
The autism tsunami
The class was led by Dennis Debbaudt, the premier autism and law enforcement issues expert who authored the book, Autism, Advocates, and Law Enforcement Professionals; Recognizing and Reducing Risk Situations for People with Autism Spectrum Disorders. In my opinion, all first responders, parents of children with autism, and persons on the autism spectrum, should read his book. (For more information on classes, please visit Autism Risk & Safety Managment.)
Mr. Debbaudt’s co-presenter, Dr. Stephen Shore, is author of the book, Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, and co-author of the Dummies series book, Understanding Autism for Dummies. (Also visit www.autismasperger.net.) During his presentation, Dr. Shore referred to the first wave phenomenon as the "autism tsunami." He estimates the average age of these autism-boomers at somewhere between 17 and 19 years of age.
Consider this: the Center for Disease Control estimates 1 in 150 births currently are on the autism spectrum and possibly still rising. 3 out of 4 are male. Half are nonverbal or profoundly verbally limited. They are seven times more likely to encounter the police and at least three times more likely to be victims of violent and/or sexual crimes. 4 out of 5 police calls will involve unusual or dangerous, not criminal, behaviors that will often be difficult to manage or interpret. Two out of 5 will be prone to seizures, and a good deal of them will be hypotonic (low-muscle-tone), making them prone to positional asphyxia and musculoskeletal injuries. To top it all off, many of them will appear to be oblivious to pain, while others will shrink, as if in pain (perhaps real pain), to your slightest touch.
28 principles to guide you
In the previous article, I tried to build a picture of recognition for subjects who may have an intellectual or developmental disorder, including autism. Once you've encountered a subject who you think might have a cognitive impairment, here are a few principles to help you out.
- First be safe. Use your Verbal Judo principles of SAFER® and make sure they are unarmed.
- Persons with ASD are as diverse as neurotypical people are. People with autism are as varied in levels of intelligence, language ability, and personality as anyone else. Start out simple. Then find out how well they can communicate and adapt to that level.
- Manage your back-up. Make sure you have back-up because you may need them just like on any other call. Have your back-up stay back a few extra feet and stay quiet. Their presence is added stimulation you don’t need right then! They should be alert, out of direct sight, and out of mind.
Don't interfere with "self-stimming."Everyone self-stimulates — we drum our fingers, tap our feet, and other quirky things when under stress or just bored. Since their sense of nonverbal communication is not like ours, persons with autism will exhibit what looks like bizarre self-stimulating behaviors, like hand flapping, twirling their body, rocking, jumping in place, handling an object and other things.
Persons with autism and/or persons in crisis abhor strange voices and sounds. Only one responder should do the talking and don’t allow unnecessary talking around the subject. (Pat Rogers, Children's Hospital of Wisconsin)
Stimming can also be auditory in the form of humming or other sounds by mouth, or repeating a single work in rapid succession, "Yes, yes, yes, yes, yes." Stimming is a natural behavior we all do to calm ourselves down or focus our concentration. Let it go and keep talking. It's helping you out more than you know.
- Move them away from the scene, or move the scene away from them. The point is to reduce outside stimulation. Give them less of everything — less sound, less light, fewer words, fewer voices, fewer people, fewer distractions. Radios, sirens, pagers, beeping medical equipment, flashing lights and all the trappings of public safety and emergency medicine are exactly what will send your subject with autism into crisis.
- Allow for acclimation. Once you've moved them, allow them to acclimate. Everyone "acclimates" to new surroundings. We simply look around the room. People with autism will often walk around the room touching things. Just watch and make sure they are safe.
- Don’t expect eye contact or other appropriate body language. Their lack of, or some might argue "unique" sense of, instinctive nonverbal communication will be unnerving. They usually won't look at you or wear an appropriate expression. They may spontaneously smile, frown, scowl, or wear a blank expression. Don’t look for too much meaning in what you see on the face.
- Don't equate the inability to speak with deafness or illiteracy. Even if your subject is nonverbal, they are likely to hear and understand some or all of their own primary language (English/ Spanish/ etc.). In the case of nonverbal subjects with autism, your spoken commands may be your only means of communication. Most of them can probably read. Try short written notes if your spoken words aren't "getting through."
- Don't read meaning into words alone. Gauge your success by their physical responses to your commands, not their words. If you ask them to sit, they might say the word "sit" before or after they physically comply. They might say, "Starbucks" because their mother always tells them to sit down during their daily trip to Starbucks. They may talk about something seemingly way off topic, like a TV show or their favorite restaurant.
They may repeat what you say back to them. Immediate repetition of what another person has said or is saying — a behavior called "echolalia" — is a common autistic trait. Repeating is thought to be their way of attempting communication with others from behind the curtain of the profound loneliness many of them feel.
They also might answer yes then no to the same question. Higher functioning individuals might quote the law to you when you are interfering, in their mind, with their right to move freely. Be prepared to read between, over, and under, the lines.
- Use a normal volume of voice until you gauge their reaction. If your voice appears to startle or frighten them then decrease your volume. If your first attempts to communicate have failed, you can try increasing your volume slightly. Sensory input is often impaired. A low volume may be expectable, while a "normal" volume might hurt their ears. Or they might be hearing impaired, like my son, Colin. You’ll have to be adaptable until you get things rolling.
- Keep your tone of voice soft and unthreatening. They will likely not be able to interpret emotion from your voice, but in case they can, you want to sound unthreatening. Slow your pace and speak clearly.
- Use an economy of words. Keep your commands brief, clear, and literal (no figures of speech). Speech is a form of stimulus. Persons with autism and/or persons in crisis abhor strange voices and sound. Only one responder should do the talking and don’t allow unnecessary talking around the subject.
- Give them extra time. The persons with autism will usually need more time to process your words and react to them. Silently give them up to 11 seconds to act or respond to your commands or questions. You can go onto the next thing once they’ve answered you.
- Dispel their fear. They don’t know what you want from them. All they know is that you are in their face. Tell them, "I am here to help you," "I will take care of you," or "I will take you home," depending on the situation. Anticipate the problem and alleviate their anxiety.
- Say "good job" to kids and adults alike. This is something I learned from Clinical Nurse Specialist Norah Johnson, RN, in Education Services at, Children’s Hospital of Wisconsin, with whom I’ve partnered in developing behavior challenges training related to patients with autism spectrum disorders. It may sound odd to say “good job” to an adult, but it represents praise they likely to be familiar with from childhood and perhaps even in their current living situation. By praising them with the phrase “good job” you're building rapport and validating for them that they are doing what you want.
- Use unthreatening body language. If they are able to interpret body language, and most will not be able too, they will not respond to your command presence. Most will not understand it and some will only feel threatened by it. Remember, you were trained to use a command presence as a means to gain compliance. Your command presence, or alpha posture, is not appropriate to use for persons with autism or anyone in crisis. It will most likely only backfire on you.
Instead of a command presence, keep your hands at belt level, gesture slowly, and move slowly. Be relaxed but alert.
- Model the behaviors you want to see. Persons with developmental disabilities may not understand the subtleties of most nonverbal communication, but they usually will respond to your mood and the gross-motor movements of your body — either negatively or positively.
So, if you want them to be still, then be still. If you want them to be calm, then be calm. Want them to stay back then maintain an appropriate space from them and from your partners. If you want them to sit then try modeling sitting. Just as they might echo your words, they might echo your behaviors.
- Personal space is relative. Stay out of tip-off or kicking range as trained. Proxemics is a form of nonverbal communication like any other body language. Since persons with autism spectrum disorders often do not have an instinctive sense of personal space, they might invade yours. Be ready for it. Guard your weapons. They can be attracted to shiny or otherwise interesting objects. If you have foreknowledge of what you’re getting into, then leave your badge, name tags, pens, and other non-essential items in your squad. Keep your hands empty — there will be time for notes later.
- Look for a cause. In my experience I’ve met kids with autism who did things like put their head through a bus window because they couldn’t tell anyone they had a bad ear infection. I’ve met some who severely slapped their own bare skin, probably just because they were cold. When I covered them with a blanket the behavior stopped. I’ve seen kids who were combative just because they were hungry. A cup of applesauce can make acting-out behaviors disappear magically.
Persons with ASD are as diverse as neurotypical people are. People with autism are as varied in levels of intelligence, language ability, and personality as anyone else. (Pat Rogers, Children's Hospital of Wisconsin)
Many teachers have talked about the "terrible hour" meaning that time in the afternoon when some kids with autism will act-up. Often when a brief nap was introduced, the behaviors ceased. First see to basic needs: pain, cold, heat, thirst, hunger, and fatigue, and then see what happens.
- Striking out is communication. Facial expressions and other body language have limited or no meaning to persons with an ASD. If we get to close, or come up behind a person, we can expect to get a dirty look over the shoulder. The dirty look means “stay back” and is often an unconscious and instinctive, rather than learned, behavior. For persons with autism, that instinct will often translate into a backhand or choking movement. They can’t say it with their mouth, or show it on their face, so their instinct is to physically strike out with their hands.
- Tell them the "rules." This is a tip I got from Dr. Steve and Dennis Debbaudt — when I did, it was like a light bulb went off over my head. People with autism are all about routine and the "rules." Law-abiding neurotypicals, like you and me, fear and/ or respect the law. Persons with ASD rely on and respect the rules. So for example, say, "Sir, the rules say I have to put these handcuffs on you."
- Quiet hands and feet. "Quiet hands" is a common command used to manage children with ASD in the home and school setting. Its one many children and adults will be familiar with. If one is striking out or kicking, try the "quiet hands" or "quiet feet" command in a stern moderate tone.
- Biting is a common defensive behavior — don't get bitten! Biting is a common defensive behavior — don't get bitten! Biting is probably the most basic mammalian defensive reaction. When attempting to physically control persons on the autism spectrum, stay clear of the mouth. The human bite is very dangerous and I’ve seen persons with autism severely bite their own loved ones. The best defense against a bite is to prevent it by stabilizing the subject’s head before the subject’s teeth can make contact with your body. If you do get bitten, mandibular or hypoglossal pressure points are worth a try, but I’ve seen them fail on a subject with autism. In the event that they are severely biting someone, there are other passive techniques for breaking off a bite that are beyond the scope of this article. But considering that biting is a common behavior for autistic persons in crisis, it may be time for public safety people to learn additional passive bite releases.
- They have an alternative sense of fear. People with autism may exhibit an irrational fear of, or be attracted to, glass. They are often attracted to bodies of water and have no fear of drowning (I taught my son to swim at a young age, and I suggest it to everyone. Work with his or her doctors and learn how to proceed).
Certain sounds and sights may frighten them, perhaps even some odors or textures, but at the same time they might have no fear of opening a door in a moving car or darting into heavy traffic. Wandering off is a big problem with ASD kids and some adults. A lack of fear of strangers, places them in all sorts of dangerous situations.
- They have an altered sense of pain. Many persons on the autism spectrum can be repulsed by certain textures and calmed by others. Irritation from certain fabrics has been described, by some persons with autism, as painful. They might have a broken arm or other severe wound and not exhibit a pain response, such as screaming, crying, or guarding. Some may be comforted by a bear hug, but the same person might shriek at a soft touch on the shoulder, as if in pain.
- Pain compliance will not work reliably, either because they can’t feel it, or because they can’t make the causal connection between your actions and the pain. For instance, they likely won’t get the connection between their action (biting) and your action (pressure point). Rapid Multiple Officer Stabilization involving the manual control of the limbs, e.g., Star Tactic (biting caution) and the blanket-escort hold, is your best method of controlling the actively violent unarmed subject that you suspect might have autism.
Wrist compression come-along tactics may injure the subject without ever achieving the desired result of compliance. When you “crank down” on the wrist, they might not wince or cry-out even if you break their wrist! They are also hypotonic making them more susceptible to injury from wrist compression. Children and elderly subjects are also very susceptible to this type of injury.
A baton strike may be useful as a means of disarming or creating dysfunction, should such a level of force become necessary. Be prepared for a baton strike to fail as a method of pain compliance or psychological control. Be ready to change your method and/or level of force quickly, depending on the circumstances.
An initial TASER® Probe Deployment will likely cause momentary incapacitation, creating a short window of opportunity in which officers can quickly move in and stabilize an autistic subject armed with an edged or blunt force weapon. Remember, one must presume that pain compliance resulting from a drive stun with the cartridge removed will be unsuccessful. Again, persons with autism may even feel the pain intensely without making the causal connection between his action (holding a weapon or potential weapon) and the pain created by your drive stun without the cartridge. They also may not understand that a TASER® is a weapon. If the subject with ASD fails to comply when you point a gun, TAZER®, OC canister or other weapon at them it could be for several reasons, such as: A.) They don’t understand what the weapon can do or even recognize it as a weapon. B.) They need several seconds (up to 11 or even 15 on average) for them to understand that you are pointing a weapon at them, C.) They don’t care that you are pointing a weapon at them because they are in crisis.
If your subject has an altered sense of pain, OC Spray will also likely fail as a means of control. Remember that they are likely to be hypotonic and have respiratory problems already. Consider that before using pepper spray. As one firefighter/paramedic put it too me recently, “Once the cops pepper spray an autistic guy or maybe someone with a diabetic reaction, and nothing happens, they usually call us to handle it. No big deal.” Pardon me if I prefer that officers not use their pepper spray as an assessment tool. Take your time and be ready to “change gears” when you think you have a subject with special needs.
An officer must always do what they must to protect themselves or others. By having a thorough knowledge of what you’re up against, your actions will have a better chance of a successful outcome for both you and your subject with autism. When responding to calls involving subjects with autism, 4 out of 5 times you’ll be handling a subject in crisis who is scared and/or lost, not a criminal. Questions regarding the use of pain compliance techniques, control devices like OC Spray, Electronic Control Devices, and impact weapons on special needs subjects should be discussed with your department experts on the use of force and the individual weapon systems involved.
- Support and constantly monitor breathing. Because they are often hypotonic, they often have difficulty breathing under stress. Also, their chest muscles may be weak and have difficulty supporting even their own weight, in some positions. Position your handcuffed subject on their side in the lateral recumbent (low-level fetal) position, meaning slightly bent at the waist and knees. If it’s safe, sit them up.
Consider transporting them in the lateral recumbent position in an ambulance. Every cop knows about positional asphyxia. Consider all your subjects with developmental disabilities to be at risk.
- Adrenaline stays up. Whether for organic or behavioral reasons (and I’ve been told by experts that it’s one, the other, or both) persons with autism need lots of extra time to cool down. It’s just like any other person in crisis. If you’re sick of waiting, then get ready to fight. Then get ready to explain yourself.
As public safety professionals, the academic evidence is against us. What we do next at the scene of a person in crisis, or potential crisis, will usually determine if the situation is resolved peacefully or not — not the subject.
The good news is, as a parent of a child with autism, and someone who’s worked and trained with street cops for most of my professional life, I know that cops are very good at sizing up these situations. Give them the tools and they’ll know what to do with them! If the pros can provide police, corrections, and healthcare security officers with the necessary tools to recognize and communicate with subjects likely to have ASD, then the situation will have a fighting chance to resolve peacefully.
A police and corrections officers' ability to influence the lives of others is enormous. Your proper handling and reporting of persons with ASD could have the power determine their destiny for the better — just as the improper handling will have the equal ability to injure them — even ruin their lives and your career. That, officers, is a tremendous responsibility. It is a responsibility as great as the responsibility for the proper execution of force, perhaps even lethal force. The power of a single police encounter has the ability to change a life forever. At no time is this more the case, then when dealing with persons in crisis, whether they have autism or not.
Special thanks to Lt. Dave Nickels awith the Appleton, WI Police Department and a TASER Senior Master Instructor.
How to 'speak' autism, Part 1