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Safe & Sound TM

Improving the Lives of all Affected by Autism.

Autism NOW webinar

Safe & Sound

May 29, 2012

Jennifer Repella | Director of Programs

Marguerite Colston I Vice President of Constituent Relations

Jennifer Repella, Autism Society VP Programs Sergeant Jimmy Donohoe, Pensacola Police Department Captain Bill Cannata, Westwood Mass. Fire Department

Who is the Autism Society?

Founded in 1965 by psychologist Dr. Bernard Rimland

 Founded in 1965 by psychologist Dr. Bernard Rimland  Oldest, largest membership organization dedicated to

Oldest, largest membership

organization dedicated to Autism Spectrum Disorders

200,000+ members

and supporters

130 chapters throughout the United States

The Autism Society works to improve quality of life,

create opportunities, and maximize potential.

Safe and Sound™ works to alleviate fear and misunderstanding by offering preparedness training, broadly distributed information, and resources to help people weather any storm.

Our vision is to improve the quality of life of individuals with ASD by ensuring their awareness and preparedness related to safety and

creating community supports to keep

them safe.

with ASD by ensuring their awareness and preparedness related to safety and creating community supports to

The Safe & Sound TM Initiative

Launched in 2005 to provide much-needed resources on topics such as general safety, emergency prevention and preparedness, and risk management utilizing a multi-pronged approach :

First Response Professionals trained by first response professional in the field who have a close connection to autism

Parents/Caregivers & Community Providers trained by

Autism Society Chapters, who are often parents, living in the areas where they train.

Individuals on the Autism Spectrum trained by others with ASD who can speak from experiencethose who are first on the scene in an emergency situation.

Safe and Sound Experts

The Autism Society has worked collaboratively,

since the late 1990s, with Dennis Debbaudt, a law

enforcement trainer with more than 15 years of experience presenting autism-related training sessions. Dennis’s book, Avoiding Unfortunate

Situations, released in 2001 was the first resource to

address the interactions between law enforcement professionals and people on the autism spectrum, and his training materials are in use by law

enforcement agencies around the world. His website

provides a wealth of invaluable information. http://autismriskmanagement.com/

Safe & Sound Experts continued

Judge Kimberly Taylor North Carolina Superior Court Judge, Retired

Sergeant Jimmy Donohoe Pensacola Police Department, creator of the Take Me Home Program

Captain William Cannata Firefighter for 30

years, statewide coordinator for the Massachusetts Autism and Law Enforcement Education Coalition

Greg Adams Associate Director of Emergency

Medical Education for MedicAlert Foundation.

What is the Autism and Law

Enforcement Education Coalition?

All trainers affiliated with the Autism and Law

Enforcement Education Coalition, commonly called the ALEC Program, are First

Responders/Professionals (Fire Fighters, Police

Officers, EMTs) who are family members of an individual diagnosed with ASD. The audience

hears from a colleague with an extraordinary

investment in the program.

What is the Take Me Home Program?

A database developed by Sgt. Jimmy Donohoe of the Pensacola Police Department for those who need special

assistance because they are unable to speak, properly identify themselves, become disoriented or act in a manner that could be misinterpreted by first responders. The system

includes a current digital picture, demographic information

and caregiver contacts. An officer in the field can query the system, searching by name or by a physical description. Once

the individual’s record is located in the

system, the officer has critical information at hand.

description. Once the individual’s record is located in the system, the officer has critical information at

Some of the Realities of Autism

Communication delays or deficits

Realities of Autism • Communication delays or deficits • Little or no eye contact • Repetitive

Little or no eye contact

Repetitive movements or mannerisms

Inflexible adherence to specific routines

Impacts on social interaction and communication skills

Senses (sight, smell, touch, taste, hearing) can be hyper- or hypo- sensitive.

Proprioception (body’s position in space) & vestibular

system (sense of movement) can also be affected.

Now Consider a Different Perspective:

Now Consider a Different Perspective: Non-Communicative = resisting arrest • • Lack of eye contact =

Non-Communicative = resisting arrest

Lack of eye contact = lying or hiding something

Odd mannerisms = potential drug user

Unusual social interaction (echolalia) = a “wise-guy”

Standing too close = threat to officer safety

Not understanding social cues = perpetrator/criminal

Placing hands in pockets = going for a weapon Attempt to touch (maybe a shiny badge) = lethal force

Issue’s most LEO will not know

Officers are trained not to let anyone in their comfort

area. If an individual with autism were to reach for

his badge because he/she likes shiny objects, the officer may act aggressively.

Officers who are not properly trained, may become

upset with an individual who is repeating his/her questions back to him/her. Unless the officer is trained, he/she may not be familiar with Echolalia.

He/she will not be aware of the different sensory issues a person with ASD may have.

What Police Are Trained to Look For

Not responding to a uniform, badge, or other emergency response symbols.

Autism may limit a person’s ability to recognize and differentiate uniforms and other common symbols.

Repetitive use of language and/or motor mannerisms (e.g., hand-flapping, twirling objects)

Difficulty making or maintaining eye contact.

First Responder Training 101

May not provide ID when asked

Be patient and speak slowly and calmly

Keep questions simple

Repeat or rephrase

Unless the person is causing injury or damaging

property with repetitive motions, do not stop this behavior.

It may be the person’s means of securing comfort

Beware of opportunities for the individual to wandering into traffic.

First Responder Training about Anxiety

Research has shown that a subset of people

with autism share a flat affect, high anxiety, and poor control of attention.

They may become upset at your sirens, lights

or merely at your presence

They may be able to talk but because of their

anxiety level, choose not too.

Preparation Makes a Difference

Countless situations might result in contact with first responders. Any of these contacts are more risky when first responders are insufficiently trained about the autism spectrum - or worse yet, are not trained at all.

Situations also become more risky when the care provider or person on the spectrum have not considered emergency situations that might arise and are not prepared, to the extent possible, for contact with law enforcement or other first responders.

Be Prepared for What?

Contact with first responders can result from many situations:

Misinterpretation of sounds or behavior of a person with ASD

in the community;

Observation of care providers’ efforts to comfort a person with ASD in distress (911 calls from the general public);

Accident and injury to care provider or person with ASD;

Individual is missing, result of wandering or elopement;

Escalated behavior occurs for any reason and a call for assistance is made;

Involvement in a situation where the individual on the

spectrum is a victim or a perpetrator of a crime.

When to Be Prepared?

That’s the thing

“that’s the sort of thing that happens to other people” or

“that isn’t something we have to worry about yet”

Think and plan ahead, anticipate different scenarios, taken action before the need arises.

Emergencies occur in daily life (car accidents/house fire) or during a major crises or natural disaster (hurricane/flood). Safe & Sound helps people identify potential public safety or criminal justice situations and provide possible solutions

We never know when. It’s easy to think,

so that individuals with ASD can be prepared for, stay safe

during (and even better yet avoid) these situations.

Preventive Measures

In home alarm systems

Pensacola Village incident

Take Me Home

A Child is Missing

Register with your local 911 center. Mark you

house in their computer system

Do not put your child’s name on the outside of clothing or backpacks.

• Register your loved one and provide a picture • If your loved one is

Register your loved one and provide a picture

If your loved one is found wondering around, law

enforcement will be able to identify them without them speaking or providing ID, by entering their description into the data base.

Law enforcement can then take them home!

• It also works in reverse, if your loved one goes missing, you can call

It also works in reverse, if your loved one goes missing, you can call law enforcement and they will

have a picture on hand.

This software is free to all law enforcement agencies.

No one should ever be charged to

register.

Provides peace of mind for parents

to all law enforcement agencies. • No one should ever be charged to register. • Provides

A Child is Missing

Free to Law Enforcement

A reverse 911 system that will call one or multiple

zip codes, with information about a missing child, Alzheimer patient or to notify residents of sexual

predators that have moved into an area.

1000 phone calls a minute

Business Contacts

notify residents of sexual predators that have moved into an area. • 1000 phone calls a

Missing Child, what first?

With any child that goes missing, search the

house well. Call or contact all neighbors or friends the child may visit.

CALL LAW ENFORCEMENT!!!

Do not hesitate.

Why don’t parents call sooner?

Fear of having a state family services

department involved.

Fear of being arrested for child neglect or

abuse

Set the fears aside and call. Seconds count, especially in these cases.

Fear of being arrested for child neglect or abuse Set the fears aside and call. Seconds

The Dangers of Drowning

Many people with autism are drawn to water.

Be aware of surrounding water sources that may

be an attractant or where the person might go to should they wander.

Teach children with ASD how to swim

91% of children with disabilities that drown individuals with autism!!!

We have to act fast.

Child Pornography

This is becoming a major problem for the

disability community.

We have to know what our children are doing

on the computers. There is software available

that can alert you when a computer goes on a prohibited site.

These are offenses that carry harsh penalities

Officer Safety

While through increased awareness officers

may have more compassion and work to

defuse any situation, we cannot drop our guard even if the person we are dealing with is

disabled.

Sometimes there is protocol that must be followed in the interest of the safety of all involved in an emergency situation.

Community Days

Community Days are a great opportunity for local people with ASD to familiarize

themselves with the fire, EMS,

and police departments

are a great opportunity for local people with ASD to familiarize themselves with the fire, EMS,

Community Days

ALEC can provide any interested community information on planning and hosting their own Community Day

Community Days ALEC can provide any interested community information on planning and hosting their own Community

Other Safety Options

There are other options commonly used by care

providers, individuals with ASD, and professionals:

iron-on labels in garments, temporary tattoos, or an identification card paired with tips carried in a wallet or

fanny pack.

Some parents have also found it necessary to use specially designed tracking devices, perimeter systems,

door & window alarms or service dogs for children on

the spectrum who are known to wander or elope.

Emergency Decal and Personal ID

One of the primary products associated with the Autism Society’s Safe and Sound program was an Emergency Decal that is intended to be placed on a door or automobile window to alert First Responders. A companion piece, the Personal Information Record, provides information to help primary caregivers in case of emergency and gives

on-scene tips for

Emergency personnel.

provides information to help primary caregivers in case of emergency and gives on-scene tips for Emergency

Autism Awareness Card

Autism Awareness Card The Autism Society offers this colorful two-sided card that provides "helpful hints" for

The Autism Society offers this colorful two-sided card that

provides "helpful hints" for

interacting with someone on the autism spectrum. The card includes special information for

law enforcement or medical emergency personnel.

Cards are available in

English or Spanish

Serving Victims of Crime series

A 2007 Autism Society survey revealed that 35% of individuals with ASD have been the victim of a crime - the Autism Society

is helping professionals provide crime victim assistance. As

part of a project funded by the Department of Justice Office for

Victims of Crime, the Autism Society created a series of fact sheets and brochures to assist victim assistance professionals,

families, and individuals with autism. There are six fact sheets

on autism for police, paramedics, child abuse counselors, domestic violence and sexual assault counselors, attorneys,

and social workers.

sexual assault counselors, attorneys, and social workers. *Available as free downloads from the Autism Society website

*Available as free downloads from the Autism Society website

Always Have an Eye on the Future

Young children grow up, get bigger and stronger

Medications can result in weight gain which can make an individual a formidable physical match

Hormones surge in puberty, difficult behavior may result

Adult services are not mandated and care requirements may remain high

Completing simple tasks of daily living can be an ordeal

Variance from routines can lead to a melt-down

Parents can not live and care for their children forever.

An ounce of prevention, worth a pound of cure

Remember that you are not alone. There is support available; you have to reach out to others and let them know what you are

going through. Make them aware of your fears and challenges

and accept help if and when it is available.

If you see a dangerous situation address it, do not explain it away or keep it to yourself.

Teach responsible behavior and hold children accountable for their behavior. The more responsibility we give our children the more degrees of freedom they have throughout life.

With that greater freedom comes greater expose to risk, this

must be anticipated and planned for.

Always attempt to expect the unexpected.

Get Involved

Think outside the box

ACIM business contacts

Volunteer to help get the Take Me Home

Program going in your community.

Contact your state legislator to have a autism training introduced in your state’s police and fire academies.

Get Involved continued

Be familiar with C.I.T. / Crisis Intervention

Team’s Law enforcement officers trained to

recognize and deal with people with a variety of disabilities.

Encourage law enforcement agencies, fire

companies, EMTs and other to get involved by hosting quality autism training for their agency

(find an officer or other professional within the

agency who has a relative with autism they can be your best advocate.)

Things You Can Do - Starting Now

1)

2)

3)

4)

5)

Get to know your neighbors and those who make up your community (fire, police, grocers, etc.); be a resource so they

understand ASD and your child in particular.

Fill out the Personal ID Record, make various copies to keep in key locations. Flag your address in the 911 system Think about/anticipate issues that could arise and contemplate solutions. When you need assistance reach out to others in the autism community for ideas.

Ensure the individual with ASD has an effective

for ideas. Ensure the individual with ASD has an effective method of communication. Practice providing personal

method of communication.

Practice providing personal information: name, address, phone number in various situations in a manner that can be understood.

Things You Can Do - Starting Now

6)

Have concrete, detailed and frequent conversations with your child about the rules (e.g. talking to strangers, staying in the

yard or with caregivers, etc.)

7)

Talk with others about your concerns and rules. Establish a phone tree and action plan that can be engaged if the worst happens.

8)

Listen, watch and learn. Try to understand why your child does

9)

things, anticipate potential issues, and develop good solutions. Address issues such as bullying at school - ensure policies are

in place and increase awareness of autism in students.

10) Enroll your child in swimming lessons if he or she does not know how to swim. Stress water safety.

Thank you! Attending this presentation and sharing the information with others is a definite step

Thank you!

Attending this presentation and sharing the information with others is a definite step to keep those you love with ASD safe and sound. www.autism-society.org/safeandsound Take Me Home info, tips, links, and more http://www.sncarc.org/ALEC/index.htm http://autismriskmanagement.com

Join us on

Me Home info, tips, links, and more http://www.sncarc.org/ALEC/index.htm http://autismriskmanagement.com Join us on

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