Safe & SoundTM

Improving the Lives of all Affected by Autism.

Safe & Sound

Autism NOW webinar

Jennifer Repella | Director 2012 May 29, 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

 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
Kimberly Taylor – North Carolina Superior Court Judge, Retired
 Judge

 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.

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
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