Improving the Lives of all Affected by Autism.

Safe & Sound Jennifer Repella | Director of Programs

Marguerite Colston I Vice President of Constituent Relations

Autism NOW webinar

May 29, 2012

Jennifer Repella, Autism Society VP Programs

Sergeant Jimmy Donohoe, Pensacola Police Department

Captain Bill Cannata, Westwood Mass. Fire Department

Safe & SoundTM

Who is the Autism Society?

Founded in 1965 by psychologist Dr. Bernard Rimland

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.

The Safe & SoundTM 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 experience—those 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.

Some of the Realities of Autism

•Communication delays or deficits

• 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:

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

“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

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 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 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

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

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.

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

Community Days

ALEC can provide any

interested community

information on planning

and hosting their own

Community Day

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.

Autism Awareness Card 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.

*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) 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.

2) Fill out the Personal ID Record, make various copies to keep

in key locations. Flag your address in the 911 system

3) Think about/anticipate issues that could arise and contemplate

solutions. When you need assistance reach out to others in the

autism community for ideas.

4) Ensure the individual with ASD has an effective

method of communication.

5) 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

things, anticipate potential issues, and develop good solutions.

9) 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.

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

Thank you!

Website: www.autismnow.org

Information & Referral Call Center: 1-855-828-8476 Next Webinar: Tuesday, June 5, 2012, 2:00-3:00 PM, EDT Autistic Workers Negotiating the World of Employment! PowerPoint/Recording: Email Phuong (pnguyen@autismnow.org ) to request materials!