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Thanks for reading Prism: the newsletter from the National Autism Resource and Information Center.
AutismNOW.org: The National Autism Information and Resource Center

November Prism

Safety

By Karen Wolf-Branigin
Director, Autism NOW Center


The November 2013 Autism NOW Center Prism newsletter is about safety. Safety is a broad topic including personal issues such as physical, social, financial, emotional, and occupational safety as well as community issues including how to prepare for or be safe if a disaster occurs.
 
Unfortunately, we’re learning though a number of reports and studies that people living with autism and other intellectual/developmental disabilities face more unsafe situations compared with their non-disabled peers. Ignoring discussions about safety issues will not serve us well. Taking the time and gaining the courage to share personal experiences with each other can assist us in shining a light on this important issue and attract individuals and organizations able to support us in identifying practical solutions.
 
We are delighted to highlight many of those solutions in this issue of Prism. Stay safe and thank you for using this issue today and in the future.
 
Safety: Autism Now Resources
The Autism NOW Center has a number of resources related to safety written by people on the spectrum. We are confident that these resources will expand your knowledge about safety issues.
 
We invite you to take a look at our section on safety that includes information and resources for individuals with autism and other disabilities.
 
Autism NOW Center Co-director Amy Goodman wrote Safety Tips to Avoid Victimization of a Crime in April 2012 and her recommendations for staying safe are still relevant today.

Safety: What are we learning from others?
Independence, Productivity, Self Determination, Integration & Inclusion (IPSII) was formed by a group of Minnesota Partners in Policy Making® graduates who have children with developmental disabilities. Their program, Being Prepared: MN Preparedness Center, funded by the U.S. Department of Health & Human Services Administration on Developmental Disabilities coordinates a number of learning events including teaching people with disabilities how to take on leadership roles in emergency preparedness activities. 

Safe Kids USA includes a group of organizations focused on preventing unintentional childhood injuries. They provide information to the general public about medication, sports, baby and water safety. Visit their website at http://www.safekids.org/ .

The National Autism Association has a series that provides information on wandering, restraint and seclusion, bully, and suicide prevention.
 
Learn more about the Autism Walk and Safety Fair in Champaign, IL. Their success may inspire you to host a similar event in your own community. 
 
Safety: What does the research tell us?
2007 was the first time the National Crime Victimization Survey included questions about disability status. Survey results found that people with disabilities experience higher rates of violence than people without disabilities.
 
The National Autism Society (NSA) reports that people with autism are at a higher safety risk level when compared with the general population. Information about autism and safety facts related to wandering, restraints/seclusion, bullying and sexual abuse is available from NSA.
 
Bullying has received a lot of attention in recent years and many people on the spectrum report that they have been bullied. The Autism NOW Center has information on the stigmatization of people with autism spectrum disorders including research reporting that children with autism have a high level of social vulnerability.
 
We welcome you to this edition of Prism and hope that these articles and recommendations assist you in training professionals and supporting them to work in partnership with people on the spectrum.

Helping Individuals with Disabilities during Emergency Situations

By Amy Goodman
Co-Director, Autism NOW


Individuals with autism and other disabilities may act differently in an emergency situation due to sensory challenges; therefore, their behavior should not be interpreted as threatening. It is important that first responders are aware of these behaviors so that they can effectively respond and assist individuals and their families. These suggestions are not only helpful for first responders, but can be used by caregivers, friends, or anyone who needs to know what to do to help an individual with a disability.

During an emergency situation, do your best to:
  • Talk in a normal, quiet, low-pitched voice. Shouting or talking loudly can be frightening to some people.
  • Ask permission to touch an individual. Some people may be alarmed if touched without warning. If you have to touch someone, use firm pressure. Do not use light touch because it will probably cause the individual to panic or flee. It could also trigger an unexpected response.
  • Lead an individual that is confrontational to a quiet space away from others. Give them as much time as you can to calm down on their own before trying to get them to make sense out of the situation.
  • Understand that some individuals may be afraid of uniforms or hats. If you are able, take off your hat and let them examine or wear it. This may help calm the individual so they can communicate with you.
  • Tell the individual exactly what you are doing, why you are doing it, and repeat yourself often.
  • Be aware that some individuals may try to hide because they are afraid. Some may flee or run to “water”, which is a common fascination for people with autism.  Some people seek out small enclosed spaces like dryers, cabinets, or closets because of the comfort of being in a “cocoon.”
  • Appreciate that many individuals with disabilities may not like loud sounds, especially high pitched noises above a certain frequency such as a fire alarm. Most individuals with autism spectrum disorder (ASD) will jump as if startled or cover their ears if they hear loud noises. Low decibel sounds are much better.
  • Recognize that many individuals with ASD need repetitive, concrete examples. Many do not like change. Individuals need predictability and need to know what to expect and what happens next.
  • Appreciate that people who do not use verbal communication would benefit from someone leading them (e.g. by the hand) and/or showing them the appropriate actions to take in case of an emergency. Some individuals may communicate by text or writing only, so they may need texts or tweets with updates and details about an emergency situation.
Abilities and challenges vary for those on the autism spectrum. Some individuals may have intellectual disabilities as well as ASD. When providing information and instruction during emergency situations, it is important that this information is accessible and easy to understand. First responders, family, friends and others that create written documents for use by people with ASD can consider the following:
  • Short and step-by-step directions should be provided.
  • For adults, written materials should be offered at two reading levels: simple (1st to 3rd grade reading level) and adult (10th grade and above reading level).
  • For adults and youth that cannot comprehend spoken or written instructions, pictures should be used in place of words. Pictures should be as realistic as possible.
  • Use real photos whenever possible.
Keep in mind that some individuals may understand what you are saying, but are not able to communicate with you verbally. Sign Language is another mode of communication that some people with autism may understand.

We hope this has been helpful and remember safety first. Always be respectful and try to put the individual at ease in an emergency situation. Never grab, or force an individual to do something. Lead by example, and hopefully the individual will understand the importance of what they need to do and follow suit.

Additional Resources

The Real Life Story of Charlie Threatt

By Charlie Threatt
 
Charlie Threatt was born on April 8, 1995. He grew up and spent most of his life in Kansas City, Missouri. He was a child born with an autism syndrome PDD-NOS (Pervasive developmental disorder not otherwise specified).  He didn't talk much when he was a baby. He was very quiet and always distanced himself from people. He had poor communication skills and anxiety and stress issues. His parents had to take him to a bunch of different therapists to help him out through his disorder. He's also in special education at school and got held back a grade.
 
As though he had enough to deal with, when Charlie was little at a daycare, he and another kid got into a fight over Power Rangers. The kid overpowered Charlie and slammed his face so hard to the ground it messed up his teeth structure. He was left lying on the floor with his blood all over the place and his head was soaking the blood up like a sponge. He was so terrified and thought he was going to die. This incident changed Charlie's life forever. Because of this incident he had a lot more trouble coping with his autism syndrome. Kids would constantly make fun of him because of the way his teeth looked and he didn't know how to respond to it. He just took all the pain in for all that time, and all the kids treated him like trash, and he didn't have a single friend at school. He was always by himself and cried all the time. He was a loner. Like any other person with autism, he was clueless and didn't know how to deal with it. He was the school laughing stock. He slept with his parents for the longest time and never slept in his own bed by himself because he was so afraid and had nightmares. Charlie didn't know how to deal with all his anxiety and stress issues put on him. He was always terrified to leave his house because of what happened to his teeth and thought it was going to happen to him again. He always hated going to the dentist because he didn't want to be reminded of what happened to his teeth.
 
At some point he decided to fight back. When someone made fun of his teeth he responded with violence and would fight anybody who made fun of his teeth. He always used to think that violence was the way to communicate when someone made fun of him. He felt like they were trying to harm him so he wanted to hurt them so they would not be able harm him. He always talked back to teachers and had temper tantrums in class and didn't care about his schoolwork. He felt the teachers were also trying to harm him. He felt like everyone in the world was trying to get him. Charlie was still a loner but not because he had autism it's because all the kids became afraid of him. No one dared to try him or else they'll be sorry. He thought he was taking care of himself the right way. He thought he was facing things like a man and always wanted to fight his own battles.
 
When Charlie was 13 years old, he started doing martial arts training. At first, he wanted to do it to find a way to hurt others who ever made fun of him. Over time he spent training slowly, he realized that violence wasn't the answer to solve his problems. Now Charlie couldn't care less if anybody made fun of him because now he only fights strictly for justice. He is now behaving better in school and actually doing his school work. He has better communication skills than he did before and doesn't have any more anxiety and stress issues. He overcame his autism syndrome.
 
Charlie's goal is to become a martial arts instructor so he can prevent anyone else going through the same violent things he went through. He wants to end the cycle of violence. He has passion for helping others and can't think of a better job than that. He wants to help people with any disabilities similar to his autism because he wants to help them deal with them better than he did. He wants to share the happiness of martial arts that it has given him to others. He wants to make sure everyone is taken care of so they can all live happy healthy lives by helping them in every aspect of their lives. He truly believes if he can overcome his obstacles, he believes anyone can overcome their own obstacles and better themselves from them. Because he also believes that all the greatest experiences in life are the ones you learn from.
 
Charlie Threatt lives in Kansas and is a senior in high school. He takes pride in being a martial artist at a local self-defense studio. He shares this piece, which won 2nd place in a writing competition, and hopes that others enjoy reading his real life story.

Did You Know?

Autism NOW Center’s fact sheets on topics of importance to people with autism spectrum disorders and other developmental disabilities are a resource you and your family members, as well as educators, employers, physicians and others, can use to get information in an easy-to-read and understand format.  The fact sheets are available in English, Spanish, and Mandarin in PDF form which can be printed out for your convenience.

To browse additional new materials, check out our resource section.

Amy's Book Corner

Life and Love: Positive Strategies for Autistic Adults
By Zosia Zaks

This book contains positive ideas about living in society, while still maintaining a sense of self. Chapter 12 is of interest because it talks about safety issues for individuals on the spectrum, which is what our issue this month is all about. It deals with personal safety and self-defense. Zosia recommends taking a self-defense class in order to learn how to appropriately defend yourself in a dangerous situation.

I would recommend this book to anyone on the spectrum who needs information and ideas on how to adjust to life on your own. It has real scenarios and practical advice that is easy to implement.
 
The Reason I Jump
By Naoki Higashida
 
This book will give the reader insight into how one individual with autism thinks, sees, and perceives the world. Through his eyes, Naoki answers questions and tries to explain what he is thinking and why he does what he does. It is really remarkable that Naoki found a way to communicate and express himself through the written word. This memoir will expel the myth that individuals with autism can’t communicate or that they have no emotions and feelings.
 
I recommend this book because it is well-written and it sums up some of the behaviors that individuals with autism have in common. One must also remember that no two individuals are exactly the same and the reason Naoki jumps may be different from another individual on the spectrum. Every individual is unique; therefore, you will a unique answer from each individual that you meet. So enjoy the book for what it is: one person’s unique way of explaining life’s mysteries.

New Online Assessment Seeks Caregiver's Perspective

Are you the caregiver of a person with intellectual or developmental disabilities? Then, The Arc needs your help!
 
Complete our Caregiver Survey to tell us more about the health status of the person you care for and about your plans for the future.  All information gathered will be used only to identify aggregate concerns and will never be used to identify individuals.
 
For more information, email Jennifer Sladen at sladen@thearc.org.

HealthMeet Webinars


Disability and Sexuality
Tuesday, November 26, 2013 from 2:00-3:00 PM EST
Register now

Dementia in Adults with Intellectual Disabilities
Wednesday, December 4, 2013 from 2:00 – 3:30 PM EST
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Understanding Behavioral Changes in Adults with I/DD and Dementia
Wednesday, December 11th at 2:00 – 3:00 PM EST
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For a complete schedule of all upcoming events, please visit the HealthMeet® Events page.

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The Autism NOW Center is a national initiative of The Arc.
 
The Administration on Intellectual and Developmental Disabilities