Educating Emergency Responders:
Why It's Important and What You Can Do To Help
By Bill Davis
Imagine yourself trapped in a burning home, firefighters everywhere,
sirens blaring, thick smoke blurring your vision. Or
imagine being questioned by a police officer about a violent crime you
have just witnessed. Or imagine that an emergency
medical technician (EMT) has just approached you to try to assess your
injuries after an accident. It's likely that you
would feel scared and confused, and find it difficult to make any sense
of what just happened.
Now imagine your child with autism in one of these same situations. He
is overwhelmed and over-stimulated. He experiences
extreme processing problems and becomes very defensive. He waves his
arms, flaps his hands, and starts to bite himself.
He's pacing back and forth, vocalizing unintelligible words of stress.
A police officer approaches cautiously. The child doesn't make eye
contact, won't answer any questions, and just repeats
whatever the officer says. He clings to a shiny ball, shifting it
frantically from hand to hand.
The officer's mind is racing - Is it drugs? Mental illness? A seizure?
He moves closer and touches the child's shoulders. The child grunts,
waves his arms frantically, and begins to run away.
The officer then subdues, cuffs, and takes the child to a holding cell.
After many questions, he retreats, wedging himself
into the corner, silently rocking.
To you and I, all of these gestures and defensive actions look very
familiar. But to the untrained eye, our children's
actions can be terribly misinterpreted and their very lives put in
danger.
Educating Emergency Personnel
Individuals with autism are in a constant state of "fight or flight,"
and episodes like the one just described can and do
occur throughout our communities. As parents of children with special
needs, I believe it is our mandate to raise the
awareness and skill level of our emergency service personnel,
caregivers, therapists, family members, and neighbors in our
communities.
The key to raising awareness is education - whether it's you educating
your local police department about your child or
pushing for the implementation of an autism training program in your
community, county or even state.
Of course, like almost everything else - finding proper services, hiring
skilled therapists, attending IEPs (Individualized
Educational Program) - the burden often rests on your shoulders, the
parent.
Below are tips for what you can do as a parent and as a member of the
larger autism community to make the world a little
safer for your child and the many others like him or her.
Steps You Can Take
Ø Pick up the phone. Contact your local police, fire, and ambulance
divisions and ask to speak to the training officer.
Ø Explain who you are. Explain to that person that you have a child with
autism and wish to make their department personnel
aware of the problems that arise when encountering people with autism.
Ø Offer to speak. Offer to speak at a daily "roll call" (the meeting
where police officers come together to learn about
their duties for the day), staff meeting, or at a department training
session.
Ø Go prepared. Pull together a presentation, including, if possible, a
packet of relevant information to hand out. I hand
out a small checklist (like the one on page 29) and a few articles that
I collected from local newspapers.
The topic areas to touch on in your talk might include:
Personal Description
I always begin my training by saying a little about myself, my family,
and our daily activities concerning our son, Chris.
Then I talk about Chris, the onset of the disorder, and the changes in
his behavior that took place. Changes like his loss
of language, the way he went limp when we touched him, and how he
stopped eating and stopped looking at us. I also talk
about how he started walking on his toes, how he would not leave the
house, and how he would just rock back and forth. It
would also upset him if we got too close, and it took months of edging a
little closer each day for him to eventually let
us sit next to him.
I talk about how we started a 40-hour-a-week, one-on-one behavioral
intervention program and the efforts we go through to
engage him constantly, which helps to keep him from falling back into
his world of self-stimulation.
I also make sure to leave my phone number and a physical description of
my son and his characteristics. You can do this by
handing out a photo of your child which includes the same information
you would put on a medical alert tag.
Provide an Overview of Autism
I also provide an overview of autism to paint a picture for them, and
discuss the behaviors they may some day encounter:
Ø non-verbal, limited range of speech, echolalia (echoing words),
rambling speech, non-focused speech, etc.
Ø noticeable physical overactivity or extreme underactivity
Ø unusual or repetitive physical actions
Ø self-injurious behavior; tantrumming
Ø difficulty in expressing needs; use of gestures or exhibits other
nervous like behaviors
Ø inappropriate response, no response to sound or verbal communication
Ø apparent over-sensitivity or under-sensitivity
Ø no real fear of danger
I also explain that many children with autism avoid eye contact, that
they can be standoffish and that they don't like to
be touched. It is very important to let the audience you are addressing
know that individuals with autism have no real fear
of danger and may have a high tolerance to pain.
Communication Issues
Talk about communication. Children with autism may express their needs
by gesturing. Some are non-verbal and use visual
communication tools, such as PECS (Picture Exchange Communication
System). Some individuals may be very loud or stand too
close. Others may touch their body parts or tickle you in an
inappropriate place. They do not understand that people do not
want to be touched that way. They may bite themselves, spit, or become
aggressive.
Remind the individuals you are speaking to that they do not need to
become an expert on autism, but that they should try to
watch for these behavioral cues.
I always try to give some communication tips, such as:
Ø get the child's attention quietly
Ø stand directly in front of him or her
Ø repeat questions
Ø have patience, and
Ø allow plenty of time for a response
What Should Emergency Responders Do?
In general, it is recommended that emergency personnel rely on their
training and maintain their composure while assessing
the overall situation. In particular, they should maintain a calm
exterior presence. A person with autism will be more
likely to react in the same manner as those around him or her. If others
escalate their actions, for example, they may
further escalate theirs. Noise or movement can further increase the
escalated behavior; it is best that the area be cleared
of bystanders to allow the individual with autism to calm down.
I also tell people about "runners" (individuals with autism who run from
their homes or the individual who is watching
them) and about augmentative communication devices.
In addition, I advise all emergency responders to check carefully for
injuries.
Different Responders; Different Concerns
In preparing what to say to the various emergency personnel, it is a
good idea to keep in mind that different emergency
responders - police officers, firefighters, and emergency medical
personnel - have different concerns that should be kept
in mind when dealing with a particular emergency situation.
Police Officers
Police are usually concerned with behaviors and how to subdue a person
with autism without harm to himself or the
individual.
Ø Remain calm and try to find a comfort level with the individual.
Ø Do not use "literal expressions," like "freeze" or "spread eagle."
Ø Do not touch the face or neck.
Ø Do not stop self-stimulatory behavior, but do intervene with
self-injurious behaviors.
Ø Check for any visible name tag, and call the contact person
immediately.
Ø Keep the individual in a supervised, secure, quiet area, ideally
separate from others in light of the potential
vulnerability of the individual.
Of course, it's important to remember that police officers need to deal
with the situation at hand first. Once they
recognize that the individual may have autism, they should be better
able to handle the situation.
Firefighters
Given the nature of a fire emergency, firefighters are concerned with an
additional layer of issues in their efforts to
deal with individuals with autism. Some of the concerns firefighters
have expressed to me are: "Many things are happening
at once," "We look scary," and "How do we coax the child out?"
The following tips address issues of concern to firefighters, but also
address preventative tips for parents:
Tips for Firefighters
Ø Look for any special window decal that may indicate that an individual
with autism or with a disability lives there.
Ø Remain calm and move slowly; quiet repetition seems to work best.
Ø After entering the building, check all corners of the rooms. Some
children will back themselves into a corner and pull
something in front of them to hide behind as this makes them feel secure
in stressful situations.
Ø Check the individual carefully for injuries and burns; some
individuals with autism have a high threshold for pain.
Tips for Parents
Ø If you feel comfortable doing this, place a special decal indicating
your child's disability on the window of his or her
room
Ø Ensure you have working smoke detectors and that they are properly
placed in areas where your child will hear them - such
as his or her favorite room.
Ø As you would with any child, teach him or her about fire safety.
Practice fire drills through repetition and, if
necessary, a step-by-step approach. Decrease the repetition gradually,
but, if necessary, continue to have periodic drills
throughout the individual's life.
Emergency Medical Technicians (EMT)
EMT personnel seem to be largely responsible for automobile accidents.
In cases of serious injury, they need to be able to
obtain vital information quickly. However, they need to consider that
they may be dealing with an individual who does not
understand their questions and/or cannot communicate his or her needs.
Ø Talk in short, calm sentences.
Ø Don't use gestures or "literal expressions."
Ø Look for a medic alert tag that may indicate a medical condition
and/or allergy.
Ø Look for visible identification bracelets, tags, key rings attached to
belts to determine if the individual has a
disability and whether there is an emergency contact person.
Ø Remember that individuals with autism don't interpret body language
and facial expressions well.
Ø Check thoroughly for injuries. Because some individuals with autism
have increased or decreased sensitivity to pain, the
tiniest scratch may cause extreme pain, or a broken bone may go
unnoticed by the child.
You Can Keep Your Child Safe
There are many other things that parents have done and can do to raise
awareness and knowledge in every community. Take
advantage of existing services, contact information, and material
available through your local ASA Chapter. Then get to
work!
Ø Turn your home into a classroom. Ask your local police and
firefighters to visit your home in uniform and talk to your
child. Create a social story to prepare him or her for the visit. [A
social story is a short, personalized story that
explains the subtle cues in social situations and breaks down a
situation or task into easy-to-follow steps.]
Ø Hold an "Awareness Day." A simple barbeque will do. Set up an
information table, hand out flyers and invite your local
state representative to your home. (I did this, and it was a great
success.) Use your newspaper's community calendar to
advertise your event.
Ø Knock on your neighbors' doors. Introduce your child and describe some
of the things they should be aware of (running,
self-injurious behavior). Hand out autism pamphlets door-to-door, and
your contact information.
Ø Create an identification tag for your child. My son wears one on his
shoe (he doesn't tolerate things on his wrist or
neck). It includes his name, phone number, and says that he is a
non-verbal child with autism. He has been taught to show
it to someone if he is lost or hurt.
Ø Contact your local paper. Contact your local newspaper and demand an
article on autism. This will definitely raise
awareness. Your local ASA Chapter can help provide a reporter with
information and facts.
Ø Register your child. Register your child with the police, fire and EMT
departments' computers, and be sure to provide
vital contact information.
Ø Take your child with you. Finally, take your child everywhere with you
and let the neighbors, shopkeepers, emergency
personnel, and educators get to know him or her as an individual, not
just some information on a piece of paper.
Parents Can Make the Difference
I cannot stress enough how important your role as a parent is. Sharing
information, training, and raising awareness will
all help to create positive encounters between emergency personnel and
individuals with autism.
Recently while in line at the bank, a police officer asked if I was the
guy who had spoken about autism at his recent
training session.
"Yes, that's me," I replied proudly.
He then proceeded to tell me that he had encountered a boy who exhibited
many of the cues I had spoken about. The officer
told me that during the encounter, he had remained calm, talked softly,
and then looked for an ID tag. He said he found one
that stated that the boy had autism and also listed his phone number.
"It was easy from there," he added, and then he thanked me.
I knew then that I had made a difference. That could have been my son. I
was very proud - proud of my efforts, proud of the
officer, and proud to be the parent of a heroic little boy with autism.
Bill Davis is the father of a six-year-old boy, Chris, with autism and
an active advocate for autism. He is on the Board of
the Autism Society of Pennsylvania/PennSAC and Representative-at-Large
for the South Central Pennsylvania Chapter of the
ASA. Bill speaks regularly in his local community, at universities and
conferences, and is working on a book about his son.
Chris currently attends the Kennedy Krieger Center for Autism and
Related Disorders' Achievements Program in Baltimore, MD.
In addition to Chris, Bill and his wife, Jeannette, have two daughters -
Danielle and Jessica.
* * * * * * * * * * * *
Emergency Personnel Curriculum/Legislation
In an effort to reduce the risk of incidents between law enforcement and
individuals with autism, ASA chapters and autism
advocates in various states are working to introduce autism curriculum
into the training programs for emergency/law
enforcement personnel.
If you would like to know more about what is being done in your state,
start by contacting your local chapter. If efforts
are not already underway in your state, offer to help.
RESOURCES
Products
IdentiFind ©. Product line includes: iron-on labels; medic-card; medical
ID bracelets; reflective strips (discounts for
large purchases). IdentiFind ©; 5465 Dutch Cover Rd., Canton, NC
28716-0567, Tel (828-648-6768); Fax (828-648-1466); Web
site (www.identifind.com).
KidAccess, Inc., has joined with other institutions and individuals as
part of a Disability Awareness Project. Working with
police officers in Western Pennsylvania we have developed a low-cost,
low-overhead communication system that can be used in
emergency situations with individuals who have hearing or language
impairments, or developmental or cognitive delays.
Contact information: Address (6526 Darlington Road, Pittsburgh, PA
15217), Tel (412-521-8552), Email (jill@...),
Web site (www.kidaccess.com/html/main.html).
ASA Autism Awareness Products
The ASA merchandise line includes ID holder, bumper stickers, tote bags,
shirts, and more. For more information, visit the
ASA's web site (www.autism-society.org).
Reading
Avoiding Unfortunate Situations, by Dennis Debbaudt 1994. A collection
of experiences, tips, and information from and about
people with autism and other developmental disabilities and their
encounters with law enforcement agencies. Available from
the Autism Society of North Carolina Bookstore (Item #OTA25, $5.00), 505
Oberlin Road, Suite 230, Raleigh NC 27605-1345,
Tel (919-743-02040, Fax (919- 743-0208), Web site
(www.autismsociety-nc.org).
Videos/Training Programs
Autism and Informed Response
The Autism and Informed Response training program includes tools for
creating an informative 90-minute presentation.
Specifically, the package includes: (1) an 8-minute video with sample
scenarios and interviews; (2) curriculum with sample
scenarios and tips on how to respond; (3) tips on how to use the
material to make a presentation. (Note: The program is
also accredited for Continuing Education Credits for EMS and Law
Enforcement personnel.)
The program, which was created by the South Carolina Autism Society and
paid for through a grant from South Carolina's
Development Disability Council, is available for $25. For a copy of the
training program or for more information on
developing/funding a similar program, contact Carol Sullivan at the
South Carolina Autism Society by phone (800-438-4790),
fax (803-794-2303), or email (csullivan@...).
Autism Awareness Video for Law Enforcement/Community Service Personnel
This 23-minute video presents young adults with autism and their family
members in community settings and suggests some
approaches which community service personnel might find helpful in
understanding and communicating with an individual with
autism.
The video, which was the winner of the 1999 ASA Media Excellence award
was created by Theresa Crawford, Rae Unger, Judy
Swift (among others) and funded, in part, by a grant from the
Pennsylvania Developmental Disabilities Council. Copies of
the video are available for $15 each from the national office of the ASA
(Tel: 800-328-8476 ext. 150).
Autism Awareness for Emergency Workers
This training packet was created by the Greater Harrisburg Area Chapter
ASA and is available for a fee. The packet includes
various informational sheets, such as general information about autism;
an emergency services notification sheet for
providing information to emergency personnel; an emergency workers
resource paper; an emergency workers poster; among
others.
For more information, contact SuAnn Brenner, Co-President of the Greater
Harrisburg Area Chapter via email
(suzy111@...).
The Autism Society of America gives permission for this article to be
reprinted, but requests that credit be given to the
ASA, including our contact information.
Angela Lowry