Recognizing Persons With
Autism
* May be non-verbal (approximately 50% of this population is
non-verbal); or may only repeat what is said to them; may communicate with sign
language, picture cards or use gestures and pointing.
* May not respond to "Stop" command, may run or
move away when approached; may cover ears and look away constantly.
* May
have seizure disorder that is not apparent to responder.
* May toe
walk, have pigeon-toed gait or running style.
* May
appear as high on drugs, drunk or having a psychotic episode.
* May
react to sudden changes in routine or sensory input- for example, lights,
sirens, canine partners, odors- with escalation of repetitive behavior, such
as, pacing, hand flapping, twirling hands, hitting self, screaming (temper
tantrums are an expected response to fear, confusion, or frustration as an
effort to stop the stimuli).
* May
attempt to present an autism information card; may wear medical alert jewelry
or have information sewn or imprinted on clothes or on non-permanent tattoo.
* May not
recognize danger or hurt; may possess weak help-seeking skills; may not be able
to distinguish between minor and serious problems, may not know where/how to
get help for problems; may not be able to give important information or be able
to answer questions.
* May not
recognize police vehicle, badge or uniform or understand what is expected of
them if they do.
* May
have difficulty recognizing and repairing breakdowns in communication such as
asking for clarification or responding to a request for clarification; may not
understand or accept officers' statements or answers.
* May
appear argumentative, stubborn, or belligerent; may say 'No!' in response to
all questions; may ask 'Why?' incessantly.
* May
repeat exactly what the officer says.
* Will
have difficulty interpreting body language, such as command presence or
defensive posture, or facial expressions, such as, raised eyebrows, rolling
eyes, smiles and frowns; and have difficulty recognizing jokes, teasing and
verbal/non-verbal emotional responses.
* May be
poor listeners: may not seem to care what you have to say; their lack of eye contact
may give you the feeling they aren't listening or have
something to hide.
* May
have passive monotone voices with unusual pronunciations; often sound
computer-like; will have difficulty using the correct volume for the situation.
* May have
difficulty judging personal space; may stand too close or too far away; may not
differentiate different body parts; may stare at you or present atypical fixed
gaze.
* May perseverate on favorite topic when uncomfortable in the
form of repeated questions-for example, What if?
What's your name? -arguments, or apparent ramblings about
favorite sports teams, train, bus or plane schedules, city names, etc.
* May
have difficulty in seeing things from a different point of view; may have
difficulty predicting other persons' reaction to them.
* Are
usually very honest, sometimes too honest; have behaviors limiting credibility
with others but do not or ably tell lies; often very blunt, not tactful.
Suggested Responses
During law enforcement patrol situations or encounters with persons with
autism, the following responses should be considered:
* Talk in direct, short phrases, such as 'Stand up now. Go to
the car.'
* Allow
for delayed responses to questions or directions/commands.
* Avoid
literal expressions and random comments, such as 'give my eye teeth to know',
what's up your sleeve?', 'are you pulling my leg?', 'spread eagle', 'you think
it's cool?
* Talk
calmly and/or repeat. Talking louder will not help understanding. Model calming
body language, slow breathing, hands low.
* Person
may not understand your defensive posture/body language; may continue to invade
your space. Use low gestures for attention; avoid rapid pointing or waving;
tell person you are not going to hurt them.
* Avoid
behaviors and language that may appear threatening.
* Look
and wait for response and/or eye contact; when comfortable, ask to 'look at
me'; don't interpret limited eye contact as deceit or disrespect.
* If
possible, avoid touching person, especially near shoulders or face; avoid
standing too near or behind; avoid stopping repetitive behaviors unless
self-injurious or risk of injury to yourself or others.
*
Evaluate for injury; person may not ask for help or show any indications of pain,
even though injury seems apparent.
* Examine
for presence of medical alert jewelry or tags; person may have seizure
disorder.
* Be
aware of person's self-protective responses to even usual lights, sounds,
touch, orders, and animals.
* If possible,
turn off sirens, flashing lights and remove canine partners or other sensory
stimulation from scene.
* If
person's behavior escalates maintain a safe distance until any inappropriate
behaviors lessen, but remain alert to the possibility of outbursts or impulsive
acts.
*
Consider use of sign language, or picture or phrase books.
* If you
take an individual into custody and even remotely suspect the person may have
an autism spectrum disorder, to reduce the risk of abuse, and/or injury, ask
jail authorities to segregate the individual and not to place them in the
general incarcerated population before a mental health professional has
evaluated them.
The above information was
obtained from Dennis Debbaudt. Dennis is the author
of Autism, Advocates and Law Enforcement Professionals: Recognizing and
Reducing Risk Situations for People with Autism Spectrum Disorders, Jessica
Kingsley Publishers, London-Philadelphia, 2002, Avoiding Unfortunate
Situations Way/SAC,
For more information and instructions on how to contact Dennis, please go
to his site, http://policeandautism.cjb.net/index.html.
Basic Autism Information that Every Paramedic/EMS Should Know:
* Individuals with autism cannot be identified by appearance. They look the same
as anyone else. They're identified by their behavior. Autism is a spectrum
disorder. It presents differently in each individual.
* 50% of individuals with autism are nonverbal throughout their life span
another 20% may present as nonverbal when highly stressed.
* 30 - 40% of individuals with autism will develop epilepsy or some other
seizure disorder by the end of adolescence.
* They have a difficult time reading facial expressions. The Wong-Baker Faces
Pain Rating Scale will NOT be an accurate measurement.
* You may encounter Autism by one of its many other names such as, ASD -Autism
Spectrum Disorder, Aspergers Syndrome and/or NVLD (Nonverbal Learning Disorder),
PDD- Pervasive Developmental Delay, PDD NOS- Pervasive Developmental Delay Not
Otherwise Specified and of course Autism.
* Some individuals with autism do not have the normal range of sensations and
don't feel the cold, heat, and pain in a typical manner. In fact they may fail
to acknowledge pain in spite of significant pathology being present. They may
show have an unusual pain response that could include laughter, humming, singing
and removing of clothing.
* Individuals with autism may engage in self stimulatory behavior such as hand
flapping, finger flicking, eye blinking, string twirling, rocking, pacing,
making repetitive noises or saying repetitive phrases that have no bearing on
the topic of conversation. This behavior is calming to the individual, even if
it doesn’t appear calming. If these behaviors are NOT presenting as a danger to
themselves or others it is in the your best interest not to interfere with it.
Allow it to continue as long as they are safe and safe to be around. Trying to
stop it may cause the individual act out aggressively and will increase anxiety.
* Individuals with autism often have tactile sensory issues. Band-aids or other
adhesive products could increase anxiety and aggression.
*When restraint is necessary, be aware that many individuals with autism have a
poorly developed upper trunk area. Positional asphyxiation could occur if steps
are not taken to prevent it: frequent change of position, not keeping them face
down. Individuals with autism may continue to resist restraint.
Exam Tips:
*Move slowly, performing exams distal to proximal. Explain what you plan to do
in advance. In fact a short story to the patient explaining basic info re the
stretcher, the SEAT BELTS which are (usually) necessary, ambulance ride,
something about what to expect at the ER etc may avert unnecessary anxiety
and/or outbursts from the patient.
*Speak simply; give plenty of time for an individual with autism to respond to
questions. A 3 – 4 second delay is not uncommon. Repeat your question and wait
again. Use a calm voice. Be aware that some autistic persons' use of "yes" and
"no" to answer questions may be random and misleading. Try inverting your
questions to validate the patient's response.
*Expect the unexpected. Children with autism may ingest something or get into
something without their parents realizing it. Look for less obvious causality
and inspect carefully for other injuries.
*If possible ask a caregiver what the functional level of the individual with
autism is, then treat accordingly. Stickers, stuffed animals and such used to
calm young children may be helpful even in older patients.
*If a caretaker is present, allowing the caretaker to ask the questions involved
in an exam may increase the likelihood of getting information from the person.
*Don't presume a nonverbal child, or a child who seems not to be listening,
can't understand. Always explain what you'll be doing and where they'll be
going.
*Provide paper and pen or laptop for the best chance of getting information
required. * Use established communication systems if available.
*Attempt to perform exams in a quiet spot if at all possible, depending on the
severity of injury and safety of the scene. Demonstrating what the exam will
consist of on another person first may help the person with autism have a visual
knowledge of what your intentions are.
*Emphasize the comfort & reassurance repeatedly. Teddy bears, stickers, etc.
used for young patients can be calming even for "older" patients
Other Helpful Information And Ideas:
*When possible avoid use of sirens and flashing lights. Sound and light
sensitivity is common in Autism.
*If possible communicate with receiving hospitals before arrival. Request a
quiet isolated for the patient with autism.
*Some autistic persons will be terrified by restraint systems used in ambulance
transfers. Ideally, explain and get consent from the patient or guardian before
attempting to strap onto a KED or stretcher.
* Allow a caregiver or familiar person ride in the ambulance or helicopter with
the patient whenever possible.
*An individual with autism may not respond to directives, and that can be
because they don't understand what's being demanded of them, or even just
because they're scared-- the fact that they're scared is the only thing they
will be aware of -- they may not be able to process language or understand a
directive when fearful.
* They may fixate on or stare at an object in the room (or on your body -- a
badge, earrings, rivets on your jeans pockets)
* They may repeat something you said or something he heard over and over and
over and over and over and over and over again. This is called echolalia and can
be calming to the individual.
* Whenever possible, avoid touching these individuals. Some, but not all,
individuals with autism will become more agitated and possibly aggressive when
touched.
Identification can be found on individuals with autism by a Medic Alert
Bracelet or:
* Families may thread the ID into a shoelace, into a belt, or as a zipper pull. It may also be a necklace.
* A business card into a small case and put it in a pocket of their
children’s clothing.
* Temporary tattoos with the child's’ name and their cell phone numbers and
placed it on the upper shoulder.
* Nonverbal individuals may be able to write their name and other
information. Provide access to writing materials or laptop computer.
Autism Facts To Know:
* 50% of individuals with autism are nonverbal throughout their lifespan another 20% may present as nonverbal when highly stressed.
* 30 - 40% of individuals with autism will develop epilepsy or some other seizure disorder during adolescence.
* Individuals with autism can't be identified by appearance. They look the same as anyone else. They're identified by their behavior.
* When restraint is necessary, be aware that many individuals with autism have a poorly developed upper trunk area. Positional asphyxiation could occur if steps are not taken to prevent it: frequent change of position, not keeping them face down. Individuals with autism may continue to resist restraint.
* Some individuals with autism do not have a normal range of sensations and may not feel the cold, heat, or pain in a typical manner. In fact they may fail to acknowledge pain in spite of significant pathology being present. They may show an unusual pain response that could include laughter, humming, singing and removing of clothing.
* Speak in short clear phrases “Get in.” “Sit Down.” “Wait here.” An individual with autism may take longer to respond to directives, and that can be because they don't understand what's being demanded of them, or even just because they're scared, they may not be able to process the language and understand a directive when fearful.
* Individuals with autism may engage in self stimulatory behavior such as hand flapping, finger flicking, eye blinking, string twirling, rocking, pacing, making repetitive noises or saying repetitive phrases that have no bearing on the topic of conversation. This behavior is calming to the individual, even if it doesn’t appear calming. They may repeat something you said or something they heard over and over and over again. This is called echolalia and can be calming to the individual. If these behaviors are NOT presenting as a danger to themselves or others it is in your best interest not to interfere with it. Allow THE BEHAVIORS to continue as long as the individual is safe and is safe to be around. Trying to stop the behaviors will increase anxiety and may cause the individual to act out aggressively.
* Autism is also known by other names, ASD -Autism Spectrum Disorder, Aspergers Syndrome, PDD- Pervasive Developmental Delay, PDD NOS- Pervasive Developmental Delay Not Otherwise Specified and of course Autism.
Difficulties with rescue:
* Force entry will be most likely. Families often need to lock doors including interior doors for safety reasons. Some families need to lock kitchen, bedrooms or bathrooms in the night.
* Barred, nailed or locked windows. This is done to keep individuals from trying to elope or wander.
* Plexiglass or Lexan windows may be in place. This makes access a problem for rescue.
* Fences with locked gates, these present an access problem for rescue. Think bolt cutters.
* Adults with autism are just as likely to hide, like children, in a fire situation. Closets, under bed and behind furniture checks need to be done during search and rescue.
* When moving an individual with autism quickly, wrap them in a blanket with their arms inside. This will give them a secure feeling and may help to calm them during a rescue. This will also prevent thrashing while trying to escape an emergency situation.
* Rescue from heights: EXTREME CAUTION should be used with any rescue from heights. An aerial tower or platform would be the easiest way to remove an individual with autism. This person may aggress towards the rescuer during this operation. ALWAYS make sure you are secured before you attempt to rescue the individual.
* These individuals are a bolt risk after rescue. Firefighter must stay with the individual with autism.
Other Issues:
* Frequently, families with individuals with autism must use systems that may appear to be neglectful or abusive. Always be sure to investigate with a caseworker that is familiar with the family and the individual if you are unsure of the situation. Families may need to use only a mattress on the floor instead of a bed because the individual may present behaviors that are dangerous if certain furniture is accessible. Such as an individual who may wedge his/her head between a wall and furniture as a result of a sensory need. Fire fighters may find bedrooms without dressers or other furniture, or that furniture may be bolted to the wall. This may be because the individual climbs or throws furniture.
* There may be beds without any blankets, sheets, pillows and such during the day. Some families teach bed making and stripping skills by doing it each night and morning. It may take years for this skill to be mastered.
* There may not be any decorations in the room or curtains on the windows. This may be due to destructive behavior or Pica (eating non food items) as opposed to neglect.
* Feces smearing is not uncommon and may occur daily.
* This is not to say that families who have individuals with autism are never neglectful or abusive but many methods to prevent injury provide for safety or assist in cleaning may look like something else. Firefighters are required reporters if they find anything that looks like abuse. I would ask that before reporting they check with a case manager or school official to be sure that there isn’t another reason for what they’ve seen. It is a tragedy for a family who is doing a good job with a very difficult situation to have to also defend it in court. It is very difficult for these children to be removed from their home environment if it is meeting their needs just because it looks odd.
Written by William Cannata fire lieutenant in Massachusetts, 27 years in the fire service. Parent of a son with autism. Member of the Autism Law Enforcement Coalition, Norfolk County, MA. & Susan Rzucidlo, parent of a son with autism, Chester County PA PERMISSION: You are permitted and encouraged to reproduce and distribute this material in any format provided that you do NOT alter the wording in any way, you do not charge a fee beyond the cost of reproduction and you give credit to the author. For more first responder information on autism go to Dennis Debbaudt's site at www.autismriskmanagement.com or to Silent No More Inc. at www.dol.net/~srz
Safety Tips For Parents:
Children and adults with autism are seven times more likely to have interactions
with first responders than their typical peers. There are steps families and
individuals can take to help make these interactions positive.
Contact your local police department and set up an appointment to talk about
your child. Fill out the premise alert form on our website. Print is as a two
sided document on white paper. Ask the local department to forward a copy of it
to the 911 system in your county ask them to put it in the data base. If you
utilize the State Trooper Barracks they will have a central system as of 1/05.
Ask your local department to create a binder of individuals with special needs
and put your child¹s form in it.
Talk to your police chief about having the ³DARE² Officer or the ³COPS in
Schools Officer² for your school take a few minutes each time they are in the
building to visit your child¹s class. Ask the officer to review safety
information, asking for their name, address and phone number and begin to build
a relationship with your child. Talk to your local Chief of Police explaining
that the officers benefit from spending a few minutes a month with these
students as well. They become more comfortable around disabled individuals, are
better able to recognize the atypical movements, noises and other oddities that
these individuals display, as being part of a neurological disorder. With this
knowledge they are better equipped out in the community and can more accurately
assess a person and a situation. Every police department already has officers in
the schools, having them meet and get to know children with disabilities in
their community is a very inexpensive and a very effective training program that
also builds good community relationships. A good selling point for police
departments. Children benefit by having frequent positive interactions with
police officers as well. They are less likely to run away from an officer if
they see them because they will associate the uniform with someone that comes
and visits and provides positive reinforcement. They will also be more likely to
respond to an officers request. This situation is a win-win for everyone.
Print an ID card for your child and have them carry it in a wallet. Have others,
teachers, adult friends, police officers, fire fighters, therapists... practice
getting your child to give them the ID do it in multiple settings.
Make a preprinted card with autism information some of your child¹s personal
information on it on the back side of the card put a family picture
with everyone sitting together in a home setting. Laminate it have a
copy for the adults to carry and the child could carry one as well. That way
they would match.
If your child will tolerate a Medical Alert Bracelet get one and put it on.
There are ID bracelets with cool pictures on one side and the personal
information on the other.
If your child will not tolerate a Medical Alert Bracelet consider ordering one
and threading it through a shoe lace, attach it to a belt or use it as a zipper
pull.
When vacationing or planning on being at a large community activity create a
temporary tattoo using specialize paper available from office supply or craft
store to put the child's first name, your first name and an emergency cell phone
number. Put is somewhere like the upper shoulder or high on the back so that an
officer will find it if they are looking for ID. Don¹t put it anywhere that is
easily seen by the public. This can present a
safety risk. Make some fun ones without ID information for them to enjoy.
There are permanent ink stamps available for the inside of clothing. Usually
they only provide you with one or two lines. Put identification information on
these stamps and mark clothing on the inside of the clothing.
Alarm systems:
Often times families find the need for an alarm system if the child or adult is
very prone to elopement or running off. There are any number of systems
available at huge range of cost. In PA under the MR Family Driven Funds Program
the cost of an alarm system may be reimbursable. Contact your case manager for
more information.
We have given contact information for many systems this is not meant to be an
endorsement of this product or company simply a list of providers.
There are simple systems from Radio Shack that simply set off chimes or an alarm
each time a door is opened. Cost is under $30. per door.
There are slightly more advanced systems from The Alzheimer's Store at
www.alzstore.com
There are perimeter alert systems that let you know if anyone or any thing have
crossed on to or out of your property.
There are electronic alert systems that allow you to track an individual
There are service dogs that can be trained to alert the family if one member is
attempting to leave the property.
Get to know your neighbors. Let them know about your special needs.
Work with your IEP team and Wraparound provider to investigate tools and
programs that can help teach safety skills to your child.
Keep checking the ASA website for updated information
www.asaphilly.org
ID Cards: a wide variety for many
purposes:
Medical ID:
Clip on plastic ID badge cover
Folded over piece of sturdy paper cut to fit in ID badge cover
You may download a
Critical Medical Information Card (28KB PDF) for your use and follow the
documented instructions or create your own.
Instructions to Create Your Own:
Fold over paper, on the outside facing side, write in big red letters "CRITICAL
MEDICAL INFORMATION". On the
inside or the backside, document the medical information, your name, and
additional contact #'s and names, preferred hospital, doctors name and number, a
list of medicines and the best way to communicate. Some prefer to have the
information inside of the card. Clip that on the car seat or booster seat on the
side closest to the door or any area that seems like it would be noticed in your
car.
On a business sized envelope, put in big red letters write "CRITICAL
MEDICAL INFORMATION". On the
inside, write a short letter with the medical information, your name, and
additional contact #'s and names, preferred hospital, doctors name and number, a
list of medicines and the best way to communicate. Put one in your glove box and
one in the visor above the driver.
Photo ID’s that show family and child together in a home setting. Both parents
and child carry a copy either in a wallet or pocket. If a tantrum occurs in a
public setting and the police or security guards are involved, you will be able
to prove that this child or adult is supposed to be with you. It could prevent a
long wait in a security office or police station. Teachers can do the same with
a wallet sized class photo.
Using the Premise Alert Form:
Some individuals who are identified as having special needs are also at a higher risk for coming in contact with police or other first responders. They may wander away from home, or have medical or emotional issues that necessitate calling for help more frequently. This form (46 KB) was developed to support families and educate the police. The goals of this check list is to reduce the occurrence of unfortunate incidents and supply the police with critical information that is specific to the child.
Completion of this form is voluntary. The information will be kept confidential and will only be used in the event that your family requires intervention. A "premises alert" will be attached to your home address in the 911 command center so that pertinent information will be available to the responding officer if the need arises. Situations in which this information might be used could include, the child is list, a child shows aggressive or dangerous behavior, a fire at your home, a medical emergency that requires an ambulance to be dispatched.
This form is being provided as a service to families. Not all families will feel the need to complete this form. Families who need to call their police department for support or intervention may find that having this form on file will give the responding officer enough background information on the child to interact successfully with the child. It is intended to be a safety net for families.
If you choose to complete this form, you may mail or hand-deliver it to the police station that serves your area. If you are unsure of which police department serves your area, contact your township or town government office for assistance. Do NOT call 911 unless it is an emergency.
If you do not have a current photo of your family member who is at increased risk for police or emergency encounters, call ahead to the police department for an appointment and they will take a digital photo of him/her to attach to the form.
If you have any questions, contact your school guidance counselor, MH/MR case manager, wrap-around provider or social worker. They will be able to help you. This form must be reviewed for accuracy each year. This form must be renewed annually in order for 911 to keep it in the system.
VACATION PREMISE ALERT REQUEST FORM
Using the Vacation Premise Alert Form:
When going on vacation, complete this form (48.4 KB) and attach a recent photo of your special needs individual. Provide only the most important information for first responders regarding the special needs individual.
Where is says medical condition, list only the most significant diagnosis.
Write your VACATION ADDRESS, not your home address. List room number if appropriate.
Write your CELL PHONE NUMBER THAT YOU CARRY WITH YOU, AS WELL AS A LAND LINE PHONE NUMBER OF THE ADDRESS IN WHICH YOU ARE STAYING. NOT your home phone number.
Upon arriving at the vacation area, make one of your first stops the local police station. Ask to speak to the officer in charge and explain that you have a special needs individual and you will be in the area. Give them a copy of the form and ask them to let their officers know during roll call.
If you are in a resort, talk to the concierge about whom in the resort you should provide this information to.
When you leave, be sure to call the department to inform them they can destroy the form and thank them for their assistance even if you didn't need to make an emergency call.
ID Cards: a wide variety for many purposes:
Obtain a clip-on badge holder. On the outside facing side, write in big red letters "CRITICAL MEDICAL INFORMATION". On the backside, document the medical information, your name, and additional contact #'s and names, preferred hospital, doctors name and number, a list of medicines and the best way to communicate. Some prefer to have the information inside of the card. Clip that on the car seat or booster seat on the side closest to the door or any area that seems like it would be noticed in your car. Also make a second copy and put it in your glove box and/or attached to the visor.
Photo ID’s that show family and child together in a home setting. Both parents and child may carry a copy either in a wallet or pocket. If a tantrum occurs in a public setting and the police or security guards are involved, you will be able to prove that this child or adult is supposed to be with you. It could prevent a long wait in a security office or police station.
Last Updated: August 25, 2005