#ASD #BLOG
SOCIAL STORIES Visual Support – Part 1 of 3
#SocialStories
​When to use Social Stories –
​Social Stories can be made to be simple or more complex for those with both low functioning and high functioning autism. These stories can be shared by the general population, as well. One can create further theme development, allowing for extended activities of modeling, shaping, or role-playing. This however, may require the person’s in-depth self-evaluation, perspective-taking and Theory of Mind (ToM) in order to understand the expectations hoped for. Also, consider the complexity of change needed and the degree to which the undesirable behavior needs to be extinguished. ​

When presenting new information which requires complex understanding, be prepared to anticipate and calmly answer your child’s questions. Remember they are probably going to compare it to other parental or school requests. For example, they may want to know –

• What’s in it for me?
• How come “sister” doesn’t have to do it?
• Who made these rules?
• Why can’t I do what I want to do?
• Where did (cause of change) come from?
• When can I stop doing this?

Try linking your answer to a familiar character. For the child who idolizes Toy Story characters, you might introduce the new concept by saying… “Woody & his friends need your help!” 

< My Thoughts >       “CHANGE…understanding or experiencing a new situation…”
#ChangeBehavior
Before anyone is able to change a behavior, routine, or schedule, you need to know where they are in their basic understanding. A ‘baseline’ for learning that new skill needs to be established. And, when you know what they already have learned, you can do what I call ‘Starting Where They Are’. Which was the thesis for my 2013 Master’s Degree in Special Education. In addition to this, one needs to know if the person understands someone else’s perspective. Do they have Theory of Mind (ToM)?
​
Cariello & Capell (2015), Carrie tells us that her autistic son Jack’s biggest issue was with theory of mind, or the concept that other people have thoughts, ideas, or opinions that are different from his own.
 
Let’s say, she tells us, that Jack really, really, really loves hot chocolate. He thinks and talks a lot about hot chocolate: which brand is his favorite, and the best marshmallows to layer on the top.
 
And then one afternoon you casually remark that you don’t really care for hot chocolate. That you had hot chocolate once when you were a little girl and it burned your mouth and you’ve never really liked it since.
 
Right away young Jack’s brain begins to short-circuit in a way that suggests his head may explode. He starts to jump and stim and chant things like, “How can you NOT like hot chocolate I LOVE hot chocolate, hot chocolate, hot chocolate, I can’t believe you don’t like hot chocolate, HOT CHOCOLATE!”
 
This can go on for hours. And if his own head does NOT, in fact, explode – if it stays firmly attached to his neck in one round piece – he will do everything in his power to make sure that your head explodes instead.

​
< My Thoughts >       “‘Theory of Mind’ is thinking that everyone is having the same ‘sensory experience’ that you are.”
 #TheoryOfMind
Theory of Mind is thinking that “…everyone sees and feels and likes the same things that you do.” When children find it difficult (if NOT impossible) to understand the emotions, intentions and behaviors of other people, they are said to lack ‘theory of mind’ (ToM). We don’t always know to what extent a child can ‘take’ another’s perspective; therefore, we may want to add ‘Social Stories’ to introduce the concept of ‘perspective’, because they can include ToM.
 
Sicile-Kira (2014) says that, “Social relationships are important to all people, yet are difficult for many on the autism spectrum to develop naturally.”  “…having social skills, knowing about expected yet often unstated rules of behavior, and social boundaries.”  “…there are different ways of teaching what is needed to be learned about relationships.” Some of the things she suggests are – Social Skills Training, Social Stories, Social Thinking, and Hidden Rules such as ‘assumed knowledge’, social hierarchies, and experiencing expected/unexpected situations.
 
< My Thoughts >       Social Stories are widely used for teaching awareness about… “expected/unexpected situations.”
 
Consider creating a Social Story just for fun, or for building skills, introducing change, or what to expect in social interactions. You can do this through Comic Strips, Storyboards, or Social Stories; enhancing all of these with age-appropriate Visuals

REFERENCES used here:

​Cariello, C. & Capell, J. (2015). Someone I’m With Has Autism; eBook Edition. 

Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, New York: Penguin Random House Company.

#ASD #BLOG
SOCIAL STORIES Visual Support – Part 2 of 3
#SocialStory
​

​#ASD #BLOG
SOCIAL STORIES – Part 2 of 3
​A favorite of parents and teachers for learning self-awareness would by teaching social skills through ‘Social Stories’. Carol Gray was the official originator of ‘Social Stories’ and you can find much online to learn more about her methods. Versions of these teacher/parent–made stories have been used the world over, in some form or another. You don’t have to take a course or follow a certain protocol in order to create them. 

Crozier & Tincani (2007) tell us that “a ‘social story’ is a short story written for an individual. The story describes a specific activity and the behavior expectations associated with that activity.” You can also create a story to introduce ‘novel’ events such as Holiday gatherings, birthday parties, or other events. #BehaviorExpectations
​
For instance if you are going to take your child to the park, you could create a little story to show them what to do or expect to see there. Here is an example of what the authors used as ‘Social Story’ text for a preschool boy who was mostly reclusive, but became animated during Preschool snacktime. #Snacktime

​            My name is Daniel
            We have snacktime at school
            Friends talk & share snacks
            Some friends say “Hi”
            Some friends ask for a drink
            Some friends ask for more snacks
            I can say “Hi” to my friends
            I can ask for a drink
            I can ask for more snacks
            Friends are happy at snacktime!

The authors commented that many children need to have pictures added to the story, these can be real-time or Clip Art. Also many need to have verbal prompts added for emphasis and to increase success.

#CreativeParents

< My Thoughts > Use your creative license here. Children with autism or autism-like behavior take in a lot more than parents are aware. They often use peripheral vision to watch your every move, but you’ll never catch them looking at you. So, create this social stories within his or her view. Best of all scenarios would be to have them choose a picture or help you in some way, however small. Of course, the latest twist on Carol Gray’s Social Stories is the APP available so that you can create, present, and store your child’s stories on your iPad or iPhone. Smiles.

Reference used here was:

Crozier, S & Tincani, M. (2006). Effects of Social Stories on Prosocial Behavior of Preschool Children with Autism Spectrum Disorder; Journal of Autism Developmental Disorders; V37, p.1803 - 1814.

NEXT: SOCIAL STORIES – Part 3 of 3

#ASD #BLOG
​Goal of a Social Skills Story –
#SocialSkills
The main objective for any intervention strategy should be to help the child with autism cope with and better understand expected behaviors, skills, and communications. Social Stories WILL engage children, thus helping them learn better ways of interacting with their environment, encounters, and situations. These stories CAN HELP to reduce an autistic child's stress, confusion, or anxiety.
#HelpWithSocialStories

​Using Social Skills Stories as an intervention strategy will help you with improving your child's understanding of many situations that they are struggling with. This can have a positive affect on reducing unwanted behaviors. Generally, children with an autistic spectrum disorder are visual thinkers and learners, meaning they can often think in pictures.
 
Social Stories use this 'picture' strategy and are usually visually rich, EASY TO USE plus, they can be edited and personalized to suit all ages and abilities.
 
Retrieved from – http://www.autismsocialstories.com/behavior/index.html

#ComicStrip
​Create your own Comic Strip or Storyboard. Use real-life images, Clip Art, or drawings for each important message.  

Social Stories for Autism may also provide autistic children with an insight into the thoughts, feelings and emotions of others. They ARE also a means of addressing communication difficulties and social awareness skills in all children with ASD.
#StoryBoard

Social Stories for Autism; Retrieved from – www.autismsocialstories.com/behavior/index.html
#Homeschool   
People also ask –
How to write social stories for children with autism?
#Homeschool   
Write an outline of your social story, and consider aspects like setting, who else is in the scene, how long the event lasts and what happens during the situation. You want the story to be brief enough to maintain a child’s attention, but you also need enough detail to accurately describe a situation in a way a child with autism will understand  behavior and skill expectations.
#ChildsDevelopment

​Why are social stories so important for children with autism?

Social skills are an important piece of your child’s development, but children with autism benefit so much from social stories. Social stories will help your autistic child to better understand and follow rules and routines of a new event or situation. Or, to gain insight into the perspectives of others. #Communicate

The ability to communicate one’s wants and needs help in decreasing frustrations which are provoking negative behaviors. Also helping in increasing the opportunity to learn to communicate one’s emotions and expressive language. The ability to communicate one’s wants and needs helps in decreasing frustrations which are provoking negative behaviors. Which at the same time, helps in increasing the child's opportunity to learn to communicate their emotions and expressive language. 
 
Know the facts both positive & negative, but focus on the positive. Focusing on the positive behavior reduces anxiety. Give examples of what to do, instead of what NOT to do.

#NoSchool
No School: Free Social Story website – Brookereagansclass.com/no-school-free-social-story
 
A social story about school being closed –

1. I will NOT be going to school for a little while. This will be a change for everyone.
2. Instead of going to school I will be learning, & spend more time at home.
3. This will be different, because I normally go to school.
4. Even though it is different, I’m positive it will be okay.
5. I will have school work to do, a routine to follow.
6. I might miss my teacher & friends, but I know I’ll see them again
7. At home, I will listen, follow the rules, I’ll be a helper.
8. I will still be learning & having fun with my family.

 
Retrieved from – Brookereagansclass.com/no-school-free-social-story

< My Thoughts >     Adjust this information as needed for your family's current circumstances. Try to keep it positive and age appropriate. Maybe different stories for each family member. Let them help you create one that’s just right!

#PersonalSpace
Social Stories About personal space –

1. Use visual cues to illustrate personal space
Visual cues are super helpful for kids, especially those with autism and/or hyperlexia. You can use a visual clue like a hula hoop to demonstrate the invisible personal space bubbles that we all have. Or try holding a  6 ft. object between you and your child to show how much space is needed.
 
2. Teach social cues for body language
Make sure your child knows what to look for to determine whether they are too close or just the right distance from another person. Teach them to look for social cues such as:

• The person's face looks mad, confused, annoyed, or uncomfortable
• The person backs away 
• The person puts their hands up with palms facing out
• The person avoids eye contact or starts to look elsewhere
• The person moves over or adjusts their position
• The person turns away
• The person starts to fidget or squirm
• The person's body looks stiff

#BodyLanguage

3. Practice personal space
Practice makes perfect, right? Kids can master the rules of personal space simply by practicing and repeating the skills over and over. Teach your kids the one-arm rule. That is, keep one arm length between you and your friend to maintain good personal space.
 
Role playing is one way to practice personal space with your kids. You could even use their favorite toys or stuffed animals to demonstrate the concepts of personal space!
 
4. Look at pictures to explore personal space concepts
Spend some time looking at pictures of people with your child. Talk about the body language the people are showing and whether or not good personal space is being observed.
#SocialDistancing

​5. Teach personal space language 
Be sure to not only model personal space language, but to teach your kids some helpful personal space related language. Some example phrases could include:

• I need some space!
• That's too close!
• You can come closer!
• You're too far away right now.
• You're standing too close to me.

 
Retrieved from – https://www.andnextcomesl.com/2017/03/how-to-teach-kids-about-personal-space.html

​12 Safety Devices To Protect Your Children
 
Each year, children are injured by hazards in and around the home. The good news is that the risk of injury can be reduced or prevented by using child-safety devices and reminding older children in the house to re-secure safety devices after disabling them.
 
Most of these safety devices are easy to find and are relatively inexpensive. You can buy them at hardware stores, baby equipment shops, supermarkets, drug stores, home improvement stores, on the Internet and through mail order catalogs. Safety devices should be sturdy enough to hinder access and yet easy for you to use. Voice warning alarms can be programmed with your voice, or that of their favorite beloved character.
 
To be effective, they must be properly installed. Follow installation instructions carefully. Remember, too, that NO device is completely childproof; determined youngsters have been known to overcome or disable them. Here are some child safety devices that can help reduce injuries to young children. But, DO NOT count on them 100%. Parents and caregivers still need to be hyper-vigilant to what kids are up to, wherever they are.

1. Latches & Locks for cabinets and drawers in kitchens, bathrooms, and other areas to help prevent poisonings and other injuries. Safety latches and locks on cabinets and drawers can help prevent children from climbing and or gaining access to medicines, household cleaners, detergent pods & powders, matches, or cigarette lighters, as well as knives and other sharp objects.  Even products with child-resistant packaging should be locked away and kept out of reach. This packaging is NOT childproof. Look for safety latches and locks that adults can easily install and use, but are sturdy enough to withstand pulls and tugs from children.
2. Gates to help prevent falls down stairs and to keep children from entering rooms and other areas with possible dangers. Look for safety gates that children cannot dislodge easily, but that adults can open and close without difficulty. For the top of stairs, only use gates that screw to the wall. Use safety gates that meet current safety standards. Replace older safety gates that have “V” shapes that are large enough to entrap a child's head and neck.
3. Door Knob Covers and Door Locks to help prevent children from entering rooms and other areas with possible dangers. Door knob covers and door locks can help keep children away from places with hazards. Be sure the door knob cover is sturdy, and allows a door to be opened quickly by an adult in case of emergency.
4. Anti-Scald Devices for faucets and shower heads and set your water heater temperature to 120 degrees Fahrenheit to help prevent burns from hot water. Anti-scald devices for regulating water temperature can help reduce the likelihood of burns.
5. Smoke Alarms & Carbon Monoxide (CO) Alarms on every level of your home, inside each bedroom, and outside sleeping areas to alert you to fires. Smoke alarms are essential safety devices for protection against fire deaths and injuries. Check them once a month to make sure they're working. Change batteries at least once a year or consider using 10-year batteries for alarms. (RESEARCH BEST METHODS TO CHECK YOUR ALARMS. You can find sources online, on YouTube, at your local fire station.)
6. Window Guards and Safety Netting to help prevent falls from windows, balconies, decks, and landings. Check these safety devices frequently to make sure they are secure and properly installed and maintained. Limit window openings to four inches or less, including the space between the window guard bars. If you have window guards, be sure at least one window in each room can be easily used for escape in a fire. Window screens are NOT effective for preventing children from falling out of windows.
7. Corner and Edge Bumpers to help prevent injuries from falls against sharp edges of furniture and fireplaces. Be sure to look for bumpers that stay securely on furniture or hearth edges.
8. Outlet Covers and Outlet Plates to help prevent electrocution. Outlet covers and outlet plates can help protect children from electrical shock and possible electrocution. Be sure outlet protectors CANNOT be easily removed by children and are large enough so that children CANNOT choke on them. If you are replacing receptacles, use a tamper-resistant type. You may also want to replace on-and-off toggle wall light switches with dimmer dials. This will help discourage children with light switch obsessions.
9. Carbon Monoxide (CO) Alarm to help prevent CO poisoning. All consumers should install CO alarms next to their Smoke Detectors, near sleeping areas in their homes. Change batteries at least once a year.
10. Cordless Window Coverings in homes with young children, in order to help prevent strangulation. Children can wrap window covering cords around their necks or can pull cords that are NOT clearly visible but are accessible and become entangled in the loops.
11. Anchors to Avoid Furniture and Appliance Tip-Overs. Furniture, TVs and small appliances can tip over and crush young children. Deaths and injuries occur when children climb into or onto washers, dryers, or fireplaces; under beds, or fall against or pull themselves up on television stands, shelves, bookcases, dressers, desks, chests and ranges. For added security, anchor these products to the floor or attach them to a wall with furniture brackets or safety straps. May also consider plastic shields in front of TVs, bookcases, and curio cabinets. Check all beds and bedroom furniture for safety.
12. Layers of Protection with Pools and Spas. A barrier completely surrounding the pool or spa including a tall fence with self-closing, self-latching gates is essential. If the house serves as a side of the barrier, doors heading to the pool should have an alarm or the pool should have a power safety cover. Pool alarms can serve as an additional layer of protection. Sliding glass doors, with visual and locks that must be re-secured after each use. Another layer of protection is to be certified in Cardio Pulmonary Resuscitation (CPR) and Automated External Defibrillator (AED).

Potvin (2013) remembers – I was trying to finish the summer yard work before it got any hotter. My neighbor was also outside working. We struck up a conversation. “How’re the kids?” he asked. “Fine,” I replied.
 
But I noticed it was too quiet. Andrea should have been playing near me while I worked. She was NOT on the swing. She was NOT on the trampoline.
 
I bolted into the house and searched everywhere for her. I tried NOT to panic, but I had a sinking feeling in my gut. I dashed back outside to yell at the neighbor, “Hey, have you seen Andrea?”
 
We both started running to our backyards. We hollered for Andrea, but no answer. There was a board missing in the neighbor’s fence around his pool.
 
“Call 911” Joe shouted. “I’ve got her, but she’s not breathing!” the ambulance arrived with sirens and flashing lights. Two men jumped out and began mouth-to-mouth resuscitation on Andrea.
 
Time stood still as I could only watch helplessly. She had not been breathing for several minutes. Then she made a gurgling noise. She coughed and sputtered, trying to get air. She opened her eyes. The CPR had been successful.
 
< My Thoughts > “CPR had been successful.” 
 
Learn Cardio Pulmonary Resuscitation (CPR) for baby, child, & adult; each requires different skills. Included in that should be Basic First Aid because of unusual bleeding which can occur due to some side effects of your child’s medication. Of course, all of this prevention is supposed to help your child feel SAFE to explore their environment. Try to balance this with plenty of SAFE play, and adventuresome activities.
 
The Red Cross, most hospitals, and many private agencies teach these CPR classes. There are classes which includes Automated External Defibrillator (AED) training and purchase. These trainings should also include learning what to do if a child or adult is choking; such as the ‘abdominal thrust’ known as the Heimlich maneuver. And, stay certified.
 
Trainings can include Basic First Aid (Medications can cause unusual wound bleeding… know how to treat ‘bite’ injuries.); make certain that all trainings show you how to deal with BOTH children and adults. These classes are all offered online, also. But this is something you should to do in person.
 
Retrieved from – https://www.cpsc.gov/Safety-education/Safety-guides/kids-and-babies/childproofing-your-home-12-Safety-devices-protect

​YARD SAFETY
The following was retrieved from – http://www.greaterlearninglp.com/6-Safety-steps-children-autism/
 
6 Safety Steps To Consider When Setting Up A Yard For Autistic Children
Posted by: Jenny Wise Tags: Activities, Children, Safety / Categories: Children, Speech
 
As a parent, keeping your kids safe is your top priority, especially in your own yard. If you’re a parent of a child on the autism spectrum, you have some extra concerns to think about. Luckily, there are some simple ways to keep your yards safe, fun, and accessible for children on the spectrum. Follow these steps to keep your whole family safe.
 
1. Check Fences and Gates Often
Children who are on the spectrum and/or very curious siblings can wander or bolt suddenly. That’s why having a secure, functional perimeter fence is essential. If you don’t have a fence, consider having one installed. If you have a fence, do a perimeter sweep on a regular basis to check for structural issues. To keep your kids extra safe, install a keyed or combination lock on any gates they have access to while outside. This ensures that a strong wind, or curious hand, won’t be able to swing gates open. Determined pets have also been known to open gates and get to the other side of fences.
 
2. Keep Lawns and Patios Clean
Sensory issues can make your children sensitive to scratchy grass or slippery spots. Aside from
sensory issues, problems with your patio and yard can also cause other issues. Children can trip
and injure themselves when running over holes in the ground or loose portions of patios. Do a
check from time to time of your yard, and try to keep things tidy, with a good line-of-sight to all areas.
 
3. Set Up SAFE, Accessible Fun
There are so many fun activities you can set up for your kids on the spectrum, but sometimes your children may want to have some traditional backyard fun. Swing sets and trampolines are always a great addition to any family’s backyard, but be sure your family is practicing safety rules. Falls and accidents can cause serious injury, so always supervise your children when swinging or on the trampoline or jungle gym. Helmets and knee pads can make falls less serious and give you peace of mind. Look for the best swing sets to suit your family’s needs, and be sure to follow installation instructions when setting it up.
 
4. Be Aware of Toxic Plants
All children, including those on the spectrum, tend to explore the world with all of their senses. This includes putting things they shouldn’t in their mouths. If you’re new to your home, take a look around your backyard, making sure there aren’t any potentially poisonous plants. Common backyard plants, like azalea, iris, and castor beans can be dangerous when consumed by people or pets. While less common, poison ivy and sumac can creep their way into home gardens as well and cause painful rashes that will be especially bothersome to children with sensory issues. Identify and remove these plants from your yard, and always research the appropriateness of new plants before you choose to put them within reach of children.
 
5. Install a Safety System
Gates and fences are good for keeping your children SAFE, but a security system can give you added opportunity to track your children. You can review and buy a video monitoring system online and install it yourself, or have a professional security company do it for you. Having video surveillance will allow you to keep an eye on your children in ‘real’ time. If you have a pool, think about installing a pool alarm as well as a video system. Most systems are viable on your smart phones, too.
 
6. Provide Some Shade!
Children on the spectrum may be more prone to sunburns, due to the common side effects of many medications. Provide some shaded playtime for your children when they are having fun in the yard. Consider setting up a pergola, some tilting sunshades, or safety-anchored umbrellas to cover portions of the yard. When your children are out in the sun, keep them covered with sunscreen, hats, and sunglasses. Don’t forget to cover their ears as well!
 
Setting up an accessible, safe but monitored haven in your backyard can encourage outdoor play and development. Follow these tips to keep your family safe while having fun in your yard and making only the best of memories with each other. And, eating outside which are needed skills for many of their school and park experiences.

< My Thoughts >       “…tips to keep your family safe…”
 
Never become complacent about what you ‘think’ your child can and can’t do. S/he can become Houdini when focused on a novel task or having some sort of exciting sensory experience.

Have a sign in your window that alerts Emergency Responders to the child with Autism who lives inside. They must also educate themselves about this disorder and learn how to adjust their response to situations that involve an autistic individual. That as the number of autistic children and adults increases in the U.S., it is more likely that first responders will encounter an autistic individual during an emergency situation. You may want to take your child to visit the nearest fire station and introduce yourselves.
 
Siri (2015) said that he had photos of Alex with contact information printed on an engraved bracelet. Besides his name and my name and phone number, I included –

• Nonverbal
• Autism & Epilepsy
• Multiple medications

 
Members of the general public, and even some Safety Officials may NOT know the word ”autistic” or ASD. They are even more unlikely to know what autistic spectrum disorder (ASD) or pervasive developmental disorder (PDD) means. Place a flyer by the front door with photo, description, and other information which may be copied and circulated.
​
Children who have ASD display mild to severe impairments in social interaction and communication. Behavior can be wildly different as well. For example, one autistic child may run away at the sound of a loud siren, whereas another may be attracted to the loud noise. There have been numerous cases of autistic children running back into a burning building and hiding because the scene outside was perceived as too chaotic.
 
Kupietz (2019) tells us that a few commonly cited tendencies of the person with autism which both parents and first responders should know are:
​

• An affinity for water. Many autistic individuals are attracted to water.
• Tendency to WANDER. They are difficult to locate because they hide, do NOT seek help, and do NOT respond verbally when called.
• Limited ability to communicate. Many autistic children communicate visually rather than verbally. Many can understand what a person is saying, but are NOT able to communicate in return.
• High thresholds of pain. Many individuals have higher than normal thresholds for pain. Just because an individual is not displaying signs of pain does NOT mean they aren’t injured.
• Work directly with a parent or caregiver. Many autistic children will only respond to their caregivers and are often frightened by unfamiliar people.
• Speak clearly, slowly and use literal, direct language. It often appears that an autistic child is NOT paying attention because they are NOT making eye contact, but many do. Remain calm, be patient and use soft, calming tones, and provide plenty of time for an answer.
• Minimize stimulation. Limit the use of sirens, horns and lights, and reduce the number of responders present. If autistic children need to be taken to a shelter, first responders should try to provide the child with his or her own space. Even marking off an area with chairs can help the child establish boundaries. Headphones can also help the child remain calm during chaotic or loud situations.
• Minimize physical contact. Be aware that many autistic children have sensory issues where even common things, like the application of bandages, may cause distress.
• If a physical exam is necessary, start at extremities and work towards the trunk and head. This helps gain the trust of the individual. It can also help to use a favorite toy or item for comfort.

Be cautious during safety restraint. If an autistic person must be restrained, First Responders need to realize that many of them, if they are held in place too long, can suffer from mechanical asphyxiation. Do NOT underestimate their strength and determination. The more an autistic person is restrained, the harder they fight because they do NOT understand the situation.
 
Retrieved from – https://medlineplus.gov/childSafety.html

SOCIAL STORIES Visual Support – Part 1 of 3

​When to use Social Stories –

​Social Stories can be made to be simple or more complex for those with both low functioning and high functioning autism. One can create further theme development, allowing for extended activities of modeling, shaping, or role-playing. This however, may require the person’s in-depth self-evaluation, perspective-taking and Theory of Mind (ToM) in order to understand the expectations hoped for. Also, consider the complexity of change needed and the degree to which the undesirable behavior needs to be extinguished. 

< My Thoughts >       “CHANGE…or experiencing a new situation…”

Before anyone is able to change a behavior, routine, or schedule, you need to know where they are in their basic understanding. A ‘baseline’ for learning that new skill needs to be established. And, when you know what they already have learned, you can do what I call ‘Starting Where They Are’. Which was the thesis for my 2013 Master’s Degree in Special Education. In addition to this, one needs to know if the person understands someone else’s perspective. Do they have Theory of Mind (ToM)?
​
Cariello & Capell (2015), Carrie tells us that her autistic son Jack’s biggest issue was with theory of mind, or the concept that other people have thoughts, ideas, or opinions that are different from his own.
 
Let’s say, she tells us, that Jack really, really, really loves hot chocolate. He thinks and talks a lot about hot chocolate: which brand is his favorite, and the best marshmallows to layer on the top.
 
And then one afternoon you casually remark that you don’t really care for hot chocolate. That you had hot chocolate once when you were a little girl and it burned your mouth and you’ve never really liked it since.
 
Right away young Jack’s brain begins to short-circuit in a way that suggests his head may explode. He starts to jump and stim and chant things like, “How can you NOT like hot chocolate I LOVE hot chocolate, hot chocolate, hot chocolate, I can’t believe you don’t like hot chocolate, HOT CHOCOLATE!”
 
This can go on for hours. And if his own head does NOT, in fact, explode – if it stays firmly attached to his neck in one round piece – he will do everything in his power to make sure that your head explodes instead.

< My Thoughts >       “‘Theory of Mind’ is thinking that everyone is having the same ‘sensory experience’ that you are.”
 
Theory of Mind is thinking that “…everyone sees and feels and likes the same things that you do.” When children find it difficult (if NOT impossible) to understand the emotions, intentions and behaviors of other people, they are said to lack ‘theory of mind’ (ToM). We don’t always know to what extent a child can ‘take’ another’s perspective; therefore, we may want to add ‘Social Stories’ to introduce the concept of ‘perspective’, because they can include ToM.
 
Sicile-Kira (2014) says that, “Social relationships are important to all people, yet are difficult for many on the autism spectrum to develop naturally.”  “…having social skills, knowing about expected yet often unstated rules of behavior, and social boundaries.”  “…there are different ways of teaching what is needed to be learned about relationships.” Some of the things she suggests are – Social Skills Training, Social Stories, Social Thinking, and Hidden Rules such as ‘assumed knowledge’, social hierarchies, and experiencing expected/unexpected situations.
 
< My Thoughts >       Social Stories are widely used for teaching awareness about… “expected/unexpected situations.”
 
Consider creating a Social Story just for fun, or for building skills, introducing change, or what to expect in social interactions. You can do this through Comic Strips, Storyboards, or Social Stories; enhancing all of these with age-appropriate Visuals

​Social Stories ( Part 2 of 3)
 
The use of Social Stories, developed by Carol Gray (2004), provides a person with the opportunity to use visual information and strategies that will improve understanding of various social situations and teach specific behaviors to use when interacting with others. Social Stories are written in first person and are written for each individual child for a difficult social situations (for example, staying in assigned seat on the bus). The Social Story should be visually represented in a mode which the reader can most readily understand (such as line drawings, photos and written words).
 
The repetitious ‘reading’ of the Social Story, when the child is calm, is what leads to the success of this strategy. Social Stories can be made on notebook paper and kept in a binder. Maybe one for home and one for school so that the stories can be read at leisure. This strategy has proven to be very successful for many who are learning to recognize, interpret and interact appropriately in different social situations.
 
Crozier & Tincani (2007) tell us that “a ‘social story’ is a short story written for an individual. The story describes a specific activity and the behavioral expectations associated with that activity.” You can also create a story to introduce ‘novel’ events such as Holiday gatherings, birthday parties, or other new or unfamiliar events.
​
For first-time Social Stories, consider that if you are going to take your child to the park, you could create a little story to show them what to do or expect to see there. Or, here is an example of what the authors used as ‘Social Story’ text for a preschool boy who was mostly reclusive, but wanted to find friends and learn how to ask for snacks, during school snacktime.

​            My name is Daniel
            We have snacktime at school
           
            Friends talk & share snacks
            Some friends say “Hi”
           
            Some friends ask for a drink
            Some friends ask for more snacks
           
            I can ask for a drink
            I can ask for more snacks
 
            I can say “Hi” to my friends
            Friends are happy when we talk at snacktime!
 
Verbal Prompts can be added for role playing or rehearsing this social activity.

• Hi, my name is Daniel
• May I sit here?
• I would like a snack

The authors commented that many children need to have pictures added to the story, these can be real-time or Clip Art. Also, many need to have verbal prompts added for emphasis and to increase success.

< My Thoughts >       Use your creative license here…
 
Children with autism or autism-like behavior take in a lot more of what’s going on around them than parents are aware of. They often use peripheral vision to watch your every move, but you’ll never catch them looking at you. So, create this Social Story within his or her view. Best of all scenarios would be to have them choose a picture or assist you in some way, however small. Of course, the latest twist on Carol Gray’s Social Stories is the APP available so that you can create, present, and store your child’s stories on your iPad or iPhone. 
NEXT: Social Stories (Part 3 of 3).

​SOCIAL STORIES (Part 3 of 3)

​< My Thoughts >       “Share perspectives…”
 
Learning something as cognitively challenging as sharing ‘perspectives’ may require pushing children beyond their immediate ‘skills’ level. Build on typical skills for your child’s age. Also, know and use what motivates your child’s behavior.
 
Understanding and teaching about ‘perspective’ might include the following Perspective Taking –, which was retrieved from –https://www.canr.msu.edu/news/the_importance_of_perspective_taking_for_young_children
 
Perspective Taking –
 
In her book, Galinsky (2010) describes ‘perspective taking’ as involving several distinct skills, including:
 

• Determining how someone else feels. In order to do this, we have to use our knowledge and understanding of someone while also ignoring our own opinions, thoughts or feelings and trying to figure out how the other person must be feeling or thinking.
• Inhibitory control. In order to think about the world from someone else’s point-of-view, we have to put our own thoughts on hold. When we use inhibitory control to engage in perspective taking, we are pausing our own desires to think of someone else.
• Cognitive flexibility. In order to switch up our perspective, we have to look outside the box of our normal thinking. This requires cognitive flexibility in helping us change the focus of our attention from ourselves to someone else.

• Talk about feelings. Anger, sadness and loneliness aren’t bad words. Talk about all feelings with your child and teach them that all feelings are valid. Try repeating your child’s words to you, describing what you see them doing, asking questions and letting them know you are there to talk if they want.
• Acknowledge and respect feelings. Children will be better able to understand others’ perspectives when they grow up knowing their thoughts, feelings and experiences were understood and respected. Engage with them and model empathy.

 
Perspective taking is really a social-emotional-intellectual skill, in that it requires hard work from our brains and also utilizes empathy and understanding of another person’s point-of-view.
 
Galinsky writes, “Perspective taking goes far beyond empathy; it involves figuring out what others think and feel, and forms the basis for children’s understanding of their ‘parents’, teachers’, and friends’ intentions. Children who can take others’ perspectives are also much less likely to get involved in conflicts.”
 
< My Thoughts >       “Perspective taking and empathy…”
 
But, understanding and showing empathy is always important when engaging with children of all ages. Offered here are the insightful words of Dr. Ross Greene (2014), who says that empathy is the first step in helping a struggling child change behaviors. He shows us how to continually keep the ‘tone’ of the intervention one of ‘empathy’ from beginning to ending. The following is my thoughts and my ‘takeaway’ from the work of Dr. Greene’s intervention steps –
 

• Empathy Step – Parent and child solve the problem collaboratively. Acknowledging by having a calm conversation something like this… “I’m noticing…” “It seems that…” This tells the child what your ‘perspective’ is. Next, you try to discover what the child’s perspective is by asking something like this… “What’s up? You seem sad (stressed, confused, upset, etc.)…”
• Invitational Step – parent showing empathy by inviting brainstorming, collaboration, and problem solving with the child. Also, giving the child an opportunity to identify and solve the problem by themselves, first. Let them take the responsibility and the ‘lead’, while listening to their perspective. Ask, “What do you think should happen?” Then, repeat what they are saying. “What I hear you saying, is….” Then wait for their response.
• Follow-up Step – the solution should be satisfying to all concerned. For instance, if a teacher is involved, make certain that person will also accept the solution. It is very important to let your child know that you are proud of their choice when solving the problem, and that you will support their decision.

 
Children of all ages need to know what is expected of them. Make certain you build success into whatever you do. Find ways to make it easier to get the ‘outcome’ that you want. Using VISUAL Supports can be an extremely helpful way that both parents and teachers can create a desired change.
 
Some suggestions would be to –
 

• First, in order to teach ‘perspective’ it helps to have an ‘understanding’ to build on. A simple story would be the classic Three Little Pigs. Point out that each character has a very different perspective on what’s happening in the story. Or, the trending ‘Trolls’ story in which the characters engage in a series of different adventures and misadventures, each driven by their perspective or mission.
• Build in an observable and tangible reward. ‘Future’ rewards will hardly ever work because even teens  are generally in the “I want it and I want it now!” mode. Perhaps offer a choice of rewards or move up the timeframe on something already promised. But don’t make promises you cannot keep.
• Be flexible for any unanticipated adjustment. Reframe or even a ‘redo’ if there is an obvious disconnect. Let the child teach the ‘change’ or ‘idea’ to you for follow-up. This will help you make certain they understand the concept correctly.

 
Hard work is required to make changes. Learning ‘change’ requires learning perspective, first. Young children don’t often think about things outside of themselves. Their world is made up of their immediate surroundings; their home and school environments.

​Eventually, they will begin to spend less time thinking about themselves and begin to observe, evaluate, and respect the needs of others. Know that this is a process and children often show resistance to this and most ‘change’ events.
 
Goals of a Social Skills Story Retrieved from – http://www.autismsocialstories.com/behavior/index.html
 
The main objective for any intervention strategy should be to
 

• help the child with autism cope with new situations
• better understand behaviors, skills and communications
• enable them to better cope with their environment, encounters and situations
• help reduce their stress, confusion or anxiety.

 
Using social skills stories as an intervention strategy WILL help you to improve your child’s understanding of many situations that they are struggling with. This CAN have a positive effect on reducing unwanted behaviors.
 
Generally children with an autistic spectrum disorder are visual thinkers and learners, meaning they think in pictures.
 
Social stories use this strategy and are normally visually rich, easy to use, can be edited and personalized to suit all ages and abilities.
 
End of retrieved excerpt.

​Getting Started –
 
Children of all ages need to know what is expected of them. Make certain you build success into whatever you do. Find ways to make it easier to get the ‘outcome’ that you want. Using VISUAL Supports can be an extremely helpful way that both parents and teachers can create a desired change.
 
Some suggestions would be to –

First, in order to teach ‘perspective’ it helps to have an ‘understanding’ to build on. A simple story would be the classic Three Little Pigs. Point out that each character has a very different perspective on what’s happening in the story. Or, the ‘Trolls’ story in which the characters engage in a series of different adventures and misadventures, each driven by their perspective or mission.

• Build in an observable and tangible reward. ‘Future’ rewards will hardly ever work because they are too remote. Even teens  are generally in the “I want it and I want it now!” mode. Perhaps offer a choice of rewards or move up the timeframe on something already promised. But don’t make promises you cannot keep.
• Be flexible for any unanticipated adjustment. Reframe or even a ‘redo’ if there is an obvious disconnect. Let the child teach the ‘change’ or ‘idea’ to you for follow-up. This will help you make certain they understand the concept correctly.

 
Hard work is required to make changes. Learning ‘change’ requires learning perspective, first. Young children don’t often think about things outside of themselves. Their world is made up of their immediate surroundings; their home and school environments.

Eventually, children will begin to spend less time thinking about themselves and begin to observe, evaluate, and respect the needs of others. Know that this is a process and children often show resistance to this and most ‘change’ events.

.Goals of a Social Skills Story Retrieved from – http://www.autismsocialstories.com/behavior/index.html
 
The main objective for any intervention strategy should be to help the child. Create a story to help them –

• Cope with new situations, encounters & situations
• Understand behaviors, skills & communications
• Enable them to better manage within their environment
• Reduce stress, confusion or anxiety.

 
Using social skills stories as an intervention strategy WILL help you to improve your child’s understanding of many situations that they are struggling with. This CAN have a positive effect on reducing unwanted behaviors.
 
Generally children with an autistic spectrum disorder are visual thinkers and learners, meaning they think in pictures.
 
Social stories are normally visually rich, easy to use, can be edited & personalized to suit all ages and abilities. Rewriting & reframing are definitely allowed!
 
REFERENCES used here:
 
Cariello, C. & Capell, J. (2015). Someone I’m With Has Autism; eBook Edition. 
 
Crozier, S & Tincani, M. (2006). Effects of Social Stories on Prosocial Behavior of Preschool Children with Autism Spectrum Disorder; Journal of Autism Developmental Disorders; V37, p.1803 - 1814.
 
Decker, J. (2013). I Wish I Were Engulfed in Flames: My Insane Life Raising Two Boys with Autism; eBook Edition.
 
Dunn, K. & Curtis, M. (2012). Incredible 5 Point Scale: Assisting Students in Understanding Social Interactions & Controlling their Emotional Responses; eBook Edition.
 
Galinsky, E. (2010). Mind in the Making: The Seven Essential Life Skills Every Child Needs; eBook Edition.
 
Gray, C. (2004 & 2015). The New Social Story Book, Revised & Expanded 15th Anniversary Edition; eBook Edition.
 
Greene, R. (2014). The Explosive Child; Harper Publishers, New York, New York.
 
Lord, C. (2003). Rules (for David); eBook Edition.
 
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, New York: Penguin Random House Company.
 
Squaresky, M. (2014). A Spot on the Wall; eBook Edition.
 
Yau, A. (2012). Autism – a Practical Guide for Parents; eBooks Edition.

End of Social Stories (3 of 3)

​Jones (2013) relates that researchers are only beginning to really look at autistic adults in any number.  Even though the first people diagnosed with autism are in their 70’s and 80’s now.
 
Sicile-Kira, C. (2014) “…the adult with ASD needs to develop strategies to be a good employee…good coaches will be needed to help put strategies in place to help those with inappropriate behaviors learn to keep them in the workplace.”
 
“Some people on the more able end of the spectrum have found the college or university environment a comfortable place for them to learn and even work.” 
 
Now there are so many opportunities to get an education by combining ‘brick & mortar’ and an ‘online’ settings to achieve various degrees.
 
“Regardless of the ability level of the individual, the person’s own preferences should be taken into account, and there are ways of trying to figure out what is important to even the least communicative of individuals.”
 
Jones (2013) continues, if you want your child to be someone who inspires you, you need to stop only valuing those adult Autistics who inspire you and instead value all of us.
 
< My Thoughts >       “stop only valuing those adult Autistics who inspire you and instead value all of us.”
 
We tolerate so much in our society, bad neighbors, bad drivers, bad language… why can’t we embrace that community of people who are trying so hard to contribute to our lives and bring purpose to theirs? 
 
Carpenter (2015) tells us that more than half of young adults with autism are disengaged from both employment and education two years after leaving high school. He believes it is because of their major challenges, as follows:
 

• Remembering & following instructions
• Adapting to changes
• Planning & organizing
• Interpreting body language & facial expressions
• Making small talk
• Following unspoken social rules

 
< My Thoughts >       “…major challenges.”  “I have never been able to keep a job…”
 
Social and sensory difficulties from childhood don’t disappear when adulthood arrives. Childhood is NOT the only thing that disappears.
 
Carpenter continues, social difficulties may frustrate college and career ambitions. And, in some states, only the more severely disabled people are eligible for assistance, such as Medicaid-funded services.

​Gardner (2013) marvels, I saw my son emerge from the changing rooms, and my soul swelled. What a handsome grown man he had become! Remembering that lost and lonely child, that child who had spent days rocking in a corner of a room, unable to communicate or relate, I thought, Wow! Look at my incredible, handsome son now!
 
Dale chose the most expensive outfit on the rail – the designer suit. After much deliberation his dad and I decided that no matter what we would support him in his pursuit of his profession. He was returning to a system which had helped him be the person he was today, and that was huge.
 
With daughter Amy settled into school, it was time to focus on Dale. We were determined to help him access college. When he qualified, he would have the same rights to employment as any others of his generation. But to get there, Dale had many more hurdles to overcome than most.
 
“Dale needs an awful lot of support and direction. He needs extra time if he’s to achieve his goals.”
 
< My Thoughts >       “Dale needs an awful lot of support and direction.” 
 
Bowler, et al. (2015) tells us that the difference between ‘supported’ and ‘unsupported’ tasks is revealed in this study. Participants found that seeing things in a specific order as with an organizational chart or by being given auditory cues helped them become more effective. Having support improved recognition of the order of events.
 
They went on to say that those with autism have different degrees of difficulties with memory and need to be cued to recall or recognize steps in a task or function. In the ‘discussion’ of the results, it was suggested that future support should be a result of spending time understanding and unpacking the complexity of the task.

​That it is necessary to recognize that those with autism need support to a greater extent than the typical person learning a new task or operation. One suggestion was that the designers of supported environments and educational settings compartmentalize and label tasks or operations into blocks labeled Block A, Block B, etc.
 
Like many with autism, Dale has periodic autistic tics similar to the involuntary muscle movements suffered by a person with Tourette Syndrome. On the rare occasion it happened, it was a serious sign he was in autism crisis.
 
< My Thoughts >       “…Tourette’s Syndrome.”
 
Retrieved from: www.cedars-sinai.edu Tourette syndrome is a neurological disorder that causes people to make unintended sounds, words and body movements, called tics. These tics may last from several seconds to minutes, and have no meaning to that person. Most people have their own unique type or pattern of tics. Severe episodes can interfere with the person’s daily lives.
 
“Mum, I’m really sorry to let you all down, but I can’t take it anymore. I want to leave college. Mum, I’m beat! Please help me get out of there.”
 
“Dale, go to Glynhill – just to get your progress reports. I guarantee, you will NOT be going back to college or Glynhill until we meet with your trainer to sort this mess out!”
 
What on earth was going on? A trainer who didn’t understand her job? A trainer who didn’t understand autism?
 
What we found out was that they thought Dale was not working at a satisfactory level. It wasn’t Dale’s failure, but the college’s failure: To make reasonable adjustments for Dale. He should not be treated less favorably because he has a disability.
 
A few days later, an upbeat Dale casually mentioned a strange quirk of fate. Joyce, his trainer from fifteen years ago, was newly qualified to work at the nursery. She could see how far he had come. Her ability to evaluate Dale’s practical tasks, both constructively and with respect for his autism, allowed him to learn and to grow in confidence.
 
Dale thrived under the new plan, plus some unanticipated “additional support”.
 
The first apology we received was lost on us. “We didn’t think anyone would have taken the job.” All the director’s energies were directed at defending his staff. A few days later, we received a letter confirming an action plan, which would allow Dale to complete his course. Dale would have access to the College Supported Learning Department. They agreed to make reasonable adjustments, and to ensure inclusion.
 
< My Thoughts >      “To make reasonable adjustments…”
 
If there is an indication that a student may have a disability that is impacting on their studies, there may be the requirement to undertake reasonable adjustments. Reasonable adjustments also addresses employee needs, allowing for the individual’s strengths and abilities; plus providing –

• retraining or offering alternative tasks
• longer supported training periods
• more time off for rehabilitation, as needed
• additional breaks, as needed
• changing inaccessible areas, as needed
• relocating work area to address sensory needs

Wentz, et al. (2012) explored the idea of using technology to help support adolescents and young adults with ADHD and autism disorders, in employment and educational settings. The idea was based on the concept that it would be easier to get additional support from a coach in an online ‘Chat Room’ setting which could be accessed during the day between the hours of 2 – 4pm.
 
Because the traditional ‘face-to-face’ communication is difficult for most individuals, a computer-mediated communication from one’s home was thought to be an easier facilitation of support. The coaches available during this time period were either clinical psychologists or educational therapists with the common denominator of having vast experience with this population.
 
The participants could also fill out a survey to help them more clearly define the problem they needed help with. For instance, they could answer ‘yes’ or ‘no’ or rate the problem from a high 10 to a low 1. Some of the choices were. “Did you know enough today to help you with your difficulties?” “Did you feel prepared today?” “Does your coach recognize and respond to you when you are having a problem?” “How did you feel today when demands were being put upon you?”
 
Wentz continues saying that some of the problems with this form of support were voiced from the participants, such as – Don’t always have access to the computer during the timeframe of 2 – 4pm. Others said that no significant improvement in ‘quality of life’ was achieved for several weeks (not immediate enough). There were those who wished they could talk to the same ‘coach’ instead of possibly getting a different one each time.

Several said that they didn’t know enough about their ‘difficulty’ to express themselves clearly to the coach; that the questionnaire didn’t provide a way to identify the problem to their satisfaction. At the end of the program though, most felt they had greater self-esteem because of the chat room experience.
 
This was not a luxury but a ‘right’. Dale’s adjustments required a support person qualified to work with him. He would be allowed two submissions of assessed work, as well as other support. He was also allowed a new placement.
 
Joyce’s input was life-changing. Now, with benefits in place, and with her support, Dale had a decent income for college. The next task was to help him get a travel card for subsidized public transport use. This would allow him greater freedom, without worries about costs.
 
Dale’s friends also attended the college. Scott, David and Matthew met up with him at breaks, and they would go into town together for lunch, just as they had at school. They formed a rock band, practicing in a local community recording studio.
 
Feeling much better, Dale ventured into his new placement, autistic tics gone. He was sleeping and eating well and looked so much better. The relief for all of us was immense. Our hopes resurfaced.
 
Dale was nominated for the college’s Adult Learner of the Year Award and again we had hope for his future. He wasn’t going to be defeated – autism or NO autism!
 
Jones (2016) shares, “My goal was to write something every day in April (Autism Awareness Month), working my way through the alphabet as I talked about ways to understand and accept us better.”

P is for Poverty –
 
So much energy is going toward making Autistics employable and very little is going toward helping Autistics secure disability benefits. I understand the huge emotional investment in wanting to help us all get jobs, and I don’t want to cut back on those efforts at all.
 
We aren’t all employable. Some of us have energy levels too low to sustain full-time employment. Some have health issues severe enough to result in a large number of missed work days. Additionally, many of our health needs, for example special diets are expensive enough that a living wage for a non-disabled person is NOT a living wage for some of us.
 
I’ve (mostly) come to terms with my own poverty, but I worry about many of my fellow Autistic adults. I feel very strongly that there should be more assistance for Autistic adults who need disability benefits but are having a hard time with the paperwork and documentation. Additionally, homelessness makes it harder to get disability benefits.
 
I applied for SSI several times before I finally got it – not because I was being turned down, but because I was too hopeless and struggling to keep up with the application process.
 
Helping Autistic adults to get disability benefits isn’t glamorous. It is hard to feel like one is doing good work when the focus has always been so strongly directed toward getting disabled people into the workforce.
 
But it’s clear that it’s time to admit that some Autistics – even some highly educated Autistics – are not going to be able to work. We need more legitimate work-at-home opportunities, more support and assistance at finding and keeping online employment. And, a lot of help in getting disability benefits for those who aren’t able to work full-time or at all.
 
We have a political climate where poor people are blamed for their poverty and disabled people, particularly those without obvious physical disabilities, are viewed with great skepticism. Vulnerable people who really need disability benefits should get help with the often confusing process of application, appeals, documentation, and more.
 
I spent a lot of time living in the streets and eating at soup kitchens and from dumpsters before I was able to get on SSI. I want people to understand how easy it is for Autistic adults to end up homeless. I’ve also had plenty of Autistic friends who were living in substandard conditions or living with aging parents, who don’t have resources themselves. It has been a silent crisis for too long. We need help and we need it now.
 
< My Thoughts >       “I want people to understand how easy it is for Autistic adults to end up homeless.”
 
Recent studies show that 12 – 15% of the homeless worldwide have autism.
 
Bennett (2016) wants people to know that there less known about how those with undiagnosed ASD presented in adults. Another problem of concern is about other critical living conditions such as living with aging parents on living on the street.
 
He suggests that it would be beneficial for the government to increase funding for evaluating health systems to enable citizens to receive a correct diagnosis, including senior citizens. And, to channel their funding and attention to the medical discoveries which will advance all human health in ethical dimensions, especially for seniors with autism.

​Sullivan, et al. (2012) found that families with an autistic child often need grandparent involvement. Involvement for support with caring, transportation to appointments, as well as for financial back-up. Grandparents were also found to help the family with the acceptance of children with disabilities, contributing positive attitudes and often serving as a parenting and teaching model.
 
There are many out there who have taken on this role. Then there is that population of aging parents and grandparents, who are themselves on the spectrum, many undiagnosed. Whichever senior category one fits into, there certainly are NOT enough supports and services to adequately help make life a little easier.
 
REFERENCES used here are:
 
Bennett, M. (2016). “What is Life Like in the Twilight Years?” A Letter About the Scant Amount of Literature on the Elderly with Autism Spectrum Disorder; Journal of Autism Developmental Disorders; V46, p.1883 – 1884.

Bowler, D., Galgg, S., Gardiner, J. (2015). Brief Report: The Role of Task Support in the Spatial and Temporal Source Memory of Adults with Autism Spectrum Disorder; Journal of Autism Developmental Disorders; V45, p.2613 - 2317.

Carpenter, S. (2015). Learning Through Seeing & Doing; Science News, p18-20.

Gardner, N. (2013). All Because of Henry; eBook Edition.

Jones, S.R. (2013). No You Don’t – Essays from an Unstrange Mind; eBook Edition.
 
Jones, S.R. (2016). The ABCs of Autism Acceptance; eBook 2016 Edition.
 
Sicile-Kira (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, New York: Penguin Random House Company.
 
Sullivan, A., Winograd, G., Verkuilen, J., et al. (2012). Children of the Autism Spectrum: Grandmother Involvement and Family Functioning; Journal of Applied Research in Intellectual Disabilities; v24, p484-494.
 
Wentz, E., Nyden, A., Krevers, B. (2012). Development of an Internet-based Support and Coaching Model for Adolescents and Young Adults with ADHD and ASD; a pilot study; Journal of Early Child & Adolescent Psychiatry; V:21, p611-622.

POWER CARDs Visual Support with

CARDS/POSTERS –
Power Cards are another VISUAL way by which to introduce change, new ideas, and/or desirable behaviors.

For instance, how would you introduce the concept that it’s okay NOT going to school. You might create a ‘new understanding and feelings’ about the need to stay home from school by first establishing what possible ‘old understandings and feelings’.

First know that ‘old understandings’ and ‘feelings’ someone has for staying home from school might be–

• Sick (felt badly)
• In trouble (felt upset)
• Severe weather (mixed feelings)
• Holiday or vacation (felt happy)
• Playing ‘hooky’ (felt guilty)
• Babysit siblings (mixed feelings)

​All of these ‘staying home from school’ reasons and attached feelings which were somewhat temporary, because they each had a predictable ending. But, this new situation is ‘unpredictable’ and ‘undefinable’. Even ‘Shelter in Place’ and/or ‘Lockdown’, or Quarantine at school is understood by your child to have a beginning and ending. 

Yau (2012) advises us that our child is likely to be much more of a visual thinker than you are. That spoken words are transitory – they are gone as soon as they are spoken.  But visual tools are concrete, whether it be a real object, a photo, a symbol or a written word. Visuals can be returned to over and over again, helping your child understand, and sometimes to accept, the information.          
 
< My Thought >         “Visuals can be returned to over and over again…”
 
Types of VISUALS are – Visual Schedules, 5 point scales, Power Cards, Social Stories, & Comic Strips or Storyboards.

Yau commiserates that we all have good and bad days – days when the sun seems to shine on us, and days when the whole world seems to be against us. And it doesn’t need to be some huge thing to make us feel bad, sometimes the cumulative effects of everyday hassles can be just as stressful as a single big trigger.
 
He says that changes are inevitable, but often they can cause upset. If you know your child had difficulties with change, try to bring changes in gradually and with plenty of prior warning. Once a child is very upset, it can be very difficult to calm them down. It is best to distract or divert them before they get to the point of being upset.
 
Other professionals suggest talking the change through with your child by having a motivating reward available for your child once they accept the change. This lets them associate the change with something positive. Keep it concrete for the ‘literal’ thinkers.
 
Another way may be developing positive mantras to use when things change, write it on a Post It and put it on the wall as a remainder, until they ‘get it’. Use wording that works for you and your child, like… “Things change, but its okay.”
 
Begin using a Visual Support by teaching a ‘Life Skill’ such as, ‘Asking for Help’, or ‘Learning How to Wait.’
 
Does your child know when and how to ask for help?  Engineer situations where your child finds success when s/he asks for ‘help’ or is asked to ‘wait’. Approach this at a time when your child is in a good state of mind, and you are in an environment which supports you.

(Dora has been asked to ‘Remember’ 3 things…)

​POWER CARDS can be limited to 5 for one process, task, or change.

1. List – REASONs & NEED for process, task, or change
2. State  – PROCESS in understandable age-appropriate terms
3. Steps –  SIMPLY explained in directive statements using 3 - 5 steps
4. Show – VISUAL using actual picture, graphic, or regalia (face mask) to SHOW each step
5. Restate – REASONS & allow for ANSWERS to questions, and changes in steps

Example of how the above Power Card format might look for the task of asking for ‘HELP’ –

1. List – REASONs & NEED      Sometimes I need help –
2. State  – PROCESS     When I don’t know how to do something… I should ask for ‘help’.
3. Steps – a. Ask for ‘help’ b. Ask before I get upset c. Make sure I am safe while I’m waiting for help
4. Show –  VISUAL Use pictures
5. Restate – REASONS Now I know what to do when I need help

Once your child has a way of asking for help, give them lots of opportunities in different situations so that they learn to generalize the skill. Remember generalizing does NOT come naturally for many children with autism.

Make sets of cards to ‘transition’, if necessary, taking the child from ‘simple’ to ‘complex’ Actions/Behaviors. Other ways to approach stages of desired ‘change’ –
 
You might say that they are called POWER CARDS because they give you the ‘power’ to change. And, the ‘power’ to learn new skills which will help you have more choices every day. Teaching the concept of how to ‘wait’ is a ‘life’ skill that your child could learn, and the earlier the better. Otherwise s/he is going to be upset a lot…and you are going to be dealing with those upsets a lot.

< My Thought >         “…waiting is a life skill.”
 
“I want it and I want it now!” is usually what we hear from all children and some adults, at one time or another. Learning how to ‘wait’ is a huge skill… at home, in school, or a public place. Start with saying something positive, such as – “the swing is waiting for you while you eat your sandwich.” My son is non-verbal, but there is nothing wrong with his hearing…but, I find that Sonny responds to a visual clue like signing a ‘w’ just as easily as saying the word ‘wait.’
 
Another ‘level’ of POWER CARDS designed to do the following –

1. Action or Desired Behavior (List Steps)
2. Use pictures (Personalize with favorite characters)
3. Positive/reward/Consequences (Now I know what to do!)
4. Next Step / Plan (For tomorrow or next session)
5. Review & Role Play (Revise if necessary)

Example –
1. Action                                
Learning to ‘wait’ for something or someone
2. Use pictures                     
Showing ‘w’ wait sign
3. Positive/reward                
I will go to the playground later this afternoon
4. Next Step / Plan                
What to do while I’m waiting
5. Review & Role Play          
Repeat what the Power Cards say
 
Eventually, your child will begin to accept that ‘wait’ means that they will get what they want, but NOT just yet.  Start introducing the concept with something your child likes and wants, but is NOT absolutely desperate for.

​Lord (2004) shares a story about how the family motivates their autistic child with the mantra – Follow the Rules – Sister says, “Come on, David.”  I let go of his sleeve, afraid I’ll rip it. When he was little, I could pull my brother behind me if he didn’t want to do something, but now David’s eight and too strong to be pulled.
 
Opening the front door, I sigh. My first day of summer vacation is nothing like I dreamed. I had imagined today warm, with seagulls winging across a blue sky, not overcast and damp.
 
“Let’s go to the video store,” David says, not moving one inch. “You’re going to the clinic. But if you do a good job, Dad’ll take you to the video store when he comes home.” The video store is David’s favorite place.
 
Beside me, David checks his watch. “I’ll pick you up at five o’clock.” “Dad will pick me up at 5 o’clock.  That’s the rule.”  David leaps down the steps. He might not understand some things, but David loves rules.
 
Why is using VISUALS successful?
 

• Helps teach routines, expectations, and behavioral standards in an alternative way
• Reinforces correct behavior
• Shows more ways to be disciplined at an earlier age
• Uses a visual format (Link with favorite characters, animals, or Superheros.)
• Provides visual examples of behavior expectations
• Delivers a more personalized and tailored behavioral intervention
• Involves children in the learning process
• Gives child immediate feedback
• Works well with kids on the autism spectrum and those with ADD/ADHD

​When to use Power /Cards –

• Use when a child has difficulty remembering routines, clarifying behavioral expectations, understanding (new) concepts, or accepting change.
• Use when a child struggles to make a choice or has difficulty understanding a cause-and-effect relationship, or has an immature perspective concept.
• Use to support the generalization of skills. Other ‘needs’ can be helped by the same steps used for ‘anxiety’.
• Use when a child seems to lack motivation – using the child’s area of interest or special character as part of the visual presentation. 

Example of POWER CARDS for ‘Feeling anxious’ –

1. (Need) Feeling ANXIOUS
2. (Understanding) I know what to do
3. (Steps)

           a.) Close my eyes
           b.) Count to 10
           c.) Take 5 big breaths
          d.) Ask for a break
    4. (Visual) Point out Pictures for each step
    5.(Restate) Show that you know what to do

In other words, you can use Power Cards to:
a.) Create a desired outcome/change
b.) Allow for hands-on-learning
c.) Reuse cards as needed
​
Power Cards can be one of the first attempts to create ‘change’ in a child’s behavior, concept, or perception. They can be homemade by parents and children. They are very effective, yet NOT intimidating because of their simplicity, novelty, and child-friendly approach. They can also be used as a way to segue into a more involved presentation, such as Social Stories.

​NEXT: Visual Support  – Social Stories

BLOG – INCREDIBLE 5 – POINT SCALE, POWER CARD, & SOCIAL STORY

No one likes change. Underdeveloped or immature thinking styles or abilities make change and learning new concepts very difficult. Keep it simple. Move lessons from ‘simple’ to more ‘complex’, with success and rehearsal time built in. Many people have difficulty ‘generalizing’ from one setting to another. Difficulty relating to ‘past’ or ‘future’ events, or how they may be connected.

Be prepared to answer your child’s questions. For example:

• What’s in it for me?
• How come “sister” doesn’t have to do it?
• Who made these rules?
• Why can’t I do what I want to do?
• Where did (cause of change) come from?
• When will this be over?

Don’t make promises you can’t keep. Try to link it to a familiar character or character’s saying. You are giving them a ‘strength’ or helpful ‘skill’ which you may choose to call their ’superpower’. New skills requiring ‘change’ need to be directly taught.

INTRODUCTION FOR USE OF THE 1-5 SCALE:

a. Teach the skill (Choose a skill/behavior/concept to be learned.)
b. Model the skill (Decide on the content & levels to be acknowledged/aware of.)
c. Practice in role play (Tryout the new skills/tasks/understanding.)

The behavioral support known as the Incredible 5-Point Scale, created by Kari Dunn Buron and Mitzi Curtis (2003), provides a visual representation of social behaviors, emotions, and abstract ideas. It is a simple scale used to teach social understanding.

This visual scale shows colored numeric scale, plus feelings/emotions and possible solutions. 

​This shows premade card with use of video game theme for the older child and teen.

Another scale which addresses a feeling with a possible solution.

< My Thoughts >      “ Incredible 5-Point Scale”

Create the scale to fit your need. What is the desired outcome? In the first visual example here, you can create a card with your child’s favorite characters or sayings. The next card was developed for a child with anger control problems. The third card has a pennant-shaped scale with ‘I feel’ (Identifying feeling of escalation and/or loss of control.) and ‘I should’ (An appropriate action to take).

Much depends on the level of your child’s understanding going into the presentation. What experience or situation do they have to tie it to or hook it on to? The scale can be a visual rule poster/card. Never assume they already know necessary steps to the concept. Have them repeat what they ‘think’ it is you want them to do. Then allow time to ‘review’, ‘revise’, & reteach’ for a better understanding.

Know that any behavior change or startling new awareness could result in an ‘extinction burst’. This is a sign that they may NOT really want to accept the ‘change’ but they recognizing the need to do so. This is when patience and calm is required while your child ‘powers through’ the change.

12 Safety Devices To Protect Your Children
 
Each year, children are injured by hazards in and around the home. The good news is that the risk of injury can be reduced or prevented by using child-safety devices and reminding older children in the house to re-secure safety devices after disabling them.
 
Most of these safety devices are easy to find and are relatively inexpensive. You can buy them at hardware stores, baby equipment shops, supermarkets, drug stores, home improvement stores, on the Internet and through mail order catalogs. Safety devices should be sturdy enough to hinder access and yet easy for you to use. Voice warning alarms can be programmed with your voice, or that of their favorite beloved character.
 
To be effective, they must be properly installed. Follow installation instructions carefully. Remember, too, that NO device is completely childproof; determined youngsters have been known to overcome or disable them. Here are some child safety devices that can help reduce injuries to young children. But, DO NOT count on them 100%. Parents and caregivers still need to be hyper-vigilant to what kids are up to, wherever they are.
 

1. Latches & Locks for cabinets and drawers in kitchens, bathrooms, and other areas to help prevent poisonings and other injuries. Safety latches and locks on cabinets and drawers can help prevent children from climbing and or gaining access to medicines, household cleaners, detergent pods & powders, matches, or cigarette lighters, as well as knives and other sharp objects.  Even products with child-resistant packaging should be locked away and kept out of reach. This packaging is NOT childproof. Look for safety latches and locks that adults can easily install and use, but are sturdy enough to withstand pulls and tugs from children.
2. Gates to help prevent falls down stairs and to keep children from entering rooms and other areas with possible dangers. Look for safety gates that children cannot dislodge easily, but that adults can open and close without difficulty. For the top of stairs, only use gates that screw to the wall. Use safety gates that meet current safety standards. Replace older safety gates that have “V” shapes that are large enough to entrap a child's head and neck.
3. Door Knob Covers and Door Locks to help prevent children from entering rooms and other areas with possible dangers. Door knob covers and door locks can help keep children away from places with hazards. Be sure the door knob cover is sturdy, and allows a door to be opened quickly by an adult in case of emergency.
4. Anti-Scald Devices for faucets and shower heads and set your water heater temperature to 120 degrees Fahrenheit to help prevent burns from hot water. Anti-scald devices for regulating water temperature can help reduce the likelihood of burns.
5. Smoke Alarms & Carbon Monoxide (CO) Alarms on every level of your home, inside each bedroom, and outside sleeping areas to alert you to fires. Smoke alarms are essential safety devices for protection against fire deaths and injuries. Check them once a month to make sure they're working. Change batteries at least once a year or consider using 10-year batteries for alarms. (RESEARCH BEST METHODS TO CHECK YOUR ALARMS. You can find sources online, on YouTube, at your local fire station.)
6. Window Guards and Safety Netting to help prevent falls from windows, balconies, decks, and landings. Check these safety devices frequently to make sure they are secure and properly installed and maintained. Limit window openings to four inches or less, including the space between the window guard bars. If you have window guards, be sure at least one window in each room can be easily used for escape in a fire. Window screens are NOT effective for preventing children from falling out of windows.
7. Corner and Edge Bumpers to help prevent injuries from falls against sharp edges of furniture and fireplaces. Be sure to look for bumpers that stay securely on furniture or hearth edges.
8. Outlet Covers and Outlet Plates to help prevent electrocution. Outlet covers and outlet plates can help protect children from electrical shock and possible electrocution. Be sure outlet protectors CANNOT be easily removed by children and are large enough so that children CANNOT choke on them. If you are replacing receptacles, use a tamper-resistant type. You may also want to replace on-and-off toggle wall light switches with dimmer dials. This will help discourage children with light switch obsessions.
9. Carbon Monoxide (CO) Alarm to help prevent CO poisoning. All consumers should install CO alarms next to their Smoke Detectors, near sleeping areas in their homes. Change batteries at least once a year.
10. Cordless Window Coverings in homes with young children, in order to help prevent strangulation. Children can wrap window covering cords around their necks or can pull cords that are NOT clearly visible but are accessible and become entangled in the loops.
11. Anchors to Avoid Furniture and Appliance Tip-Overs. Furniture, TVs and small appliances can tip over and crush young children. Deaths and injuries occur when children climb into or onto washers, dryers, or fireplaces; under beds, or fall against or pull themselves up on television stands, shelves, bookcases, dressers, desks, chests and ranges. For added security, anchor these products to the floor or attach them to a wall with furniture brackets or safety straps. May also consider plastic shields in front of TVs, bookcases, and curio cabinets. Check all beds and bedroom furniture for safety.
12. Layers of Protection with Pools and Spas. A barrier completely surrounding the pool or spa including a tall fence with self-closing, self-latching gates is essential. If the house serves as a side of the barrier, doors heading to the pool should have an alarm or the pool should have a power safety cover. Pool alarms can serve as an additional layer of protection. Sliding glass doors, with visual and locks that must be re-secured after each use. Another layer of protection is to be certified in Cardio Pulmonary Resuscitation (CPR) and Automated External Defibrillator (AED).

​Potvin (2013) remembers – I was trying to finish the summer yard work before it got any hotter. My neighbor was also outside working. We struck up a conversation. “How’re the kids?” he asked. “Fine,” I replied.
 
But I noticed it was too quiet. Andrea should have been playing near me while I worked. She was NOT on the swing. She was NOT on the trampoline.
 
I bolted into the house and searched everywhere for her. I tried NOT to panic, but I had a sinking feeling in my gut. I dashed back outside to yell at the neighbor, “Hey, have you seen Andrea?”
 
We both started running to our backyards. We hollered for Andrea, but no answer. There was a board missing in the neighbor’s fence around his pool.
 
“Call 911” Joe shouted. “I’ve got her, but she’s not breathing!” the ambulance arrived with sirens and flashing lights. Two men jumped out and began mouth-to-mouth resuscitation on Andrea.
 
Time stood still as I could only watch helplessly. She had not been breathing for several minutes. Then she made a gurgling noise. She coughed and sputtered, trying to get air. She opened her eyes. The CPR had been successful.
 
< My Thoughts > “CPR had been successful.” 
 
Learn Cardio Pulmonary Resuscitation (CPR) for baby, child, & adult; each requires different skills. Included in that should be Basic First Aid because of unusual bleeding which can occur due to some side effects of your child’s medication. Of course, all of this prevention is supposed to help your child feel SAFE to explore their environment. Try to balance this with plenty of SAFE play, and adventuresome activities.
 
The Red Cross, most hospitals, and many private agencies teach these CPR classes. There are classes which includes Automated External Defibrillator (AED) training and purchase. These trainings should also include learning what to do if a child or adult is choking; such as the ‘abdominal thrust’ known as the Heimlich maneuver. And, stay certified.
 
Trainings can include Basic First Aid (Medications can cause unusual wound bleeding… know how to treat ‘bite’ injuries.); make certain that all trainings show you how to deal with BOTH children and adults. These classes are all offered online, also. But this is something you should to do in person.
 
Retrieved from – https://www.cpsc.gov/Safety-education/Safety-guides/kids-and-babies/childproofing-your-home-12-Safety-devices-protect

​YARD SAFETY
The following was retrieved from – http://www.greaterlearninglp.com/6-Safety-steps-children-autism/
 
6 Safety Steps To Consider When Setting Up A Yard For Autistic Children
Posted by: Jenny Wise Tags: Activities, Children, Safety / Categories: Children, Speech
 
As a parent, keeping your kids safe is your top priority, especially in your own yard. If you’re a parent of a child on the autism spectrum, you have some extra concerns to think about. Luckily, there are some simple ways to keep your yards safe, fun, and accessible for children on the spectrum. Follow these steps to keep your whole family safe.
 
1. Check Fences and Gates Often
Children who are on the spectrum and/or very curious siblings can wander or bolt suddenly. That’s why having a secure, functional perimeter fence is essential. If you don’t have a fence, consider having one installed. If you have a fence, do a perimeter sweep on a regular basis to check for structural issues. To keep your kids extra safe, install a keyed or combination lock on any gates they have access to while outside. This ensures that a strong wind, or curious hand, won’t be able to swing gates open. Determined pets have also been known to open gates and get to the other side of fences.
 
2. Keep Lawns and Patios Clean
Sensory issues can make your children sensitive to scratchy grass or slippery spots. Aside from
sensory issues, problems with your patio and yard can also cause other issues. Children can trip
and injure themselves when running over holes in the ground or loose portions of patios. Do a
check from time to time of your yard, and try to keep things tidy, with a good line-of-sight to all areas.
 
3. Set Up SAFE, Accessible Fun
There are so many fun activities you can set up for your kids on the spectrum, but sometimes your children may want to have some traditional backyard fun. Swing sets and trampolines are always a great addition to any family’s backyard, but be sure your family is practicing safety rules. Falls and accidents can cause serious injury, so always supervise your children when swinging or on the trampoline or jungle gym. Helmets and knee pads can make falls less serious and give you peace of mind. Look for the best swing sets to suit your family’s needs, and be sure to follow installation instructions when setting it up.
 
4. Be Aware of Toxic Plants
All children, including those on the spectrum, tend to explore the world with all of their senses. This includes putting things they shouldn’t in their mouths. If you’re new to your home, take a look around your backyard, making sure there aren’t any potentially poisonous plants. Common backyard plants, like azalea, iris, and castor beans can be dangerous when consumed by people or pets. While less common, poison ivy and sumac can creep their way into home gardens as well and cause painful rashes that will be especially bothersome to children with sensory issues. Identify and remove these plants from your yard, and always research the appropriateness of new plants before you choose to put them within reach of children.
 
5. Install a Safety System
Gates and fences are good for keeping your children SAFE, but a security system can give you added opportunity to track your children. You can review and buy a video monitoring system online and install it yourself, or have a professional security company do it for you. Having video surveillance will allow you to keep an eye on your children in ‘real’ time. If you have a pool, think about installing a pool alarm as well as a video system. Most systems are viable on your smart phones, too.
 
6. Provide Some Shade!
Children on the spectrum may be more prone to sunburns, due to the common side effects of many medications. Provide some shaded playtime for your children when they are having fun in the yard. Consider setting up a pergola, some tilting sunshades, or safety-anchored umbrellas to cover portions of the yard. When your children are out in the sun, keep them covered with sunscreen, hats, and sunglasses. Don’t forget to cover their ears as well!
 
Setting up an accessible, safe but monitored haven in your backyard can encourage outdoor play and development. Follow these tips to keep your family safe while having fun in your yard and making only the best of memories with each other. And, eating outside which are needed skills for many of their school and park experiences.

< My Thoughts >       “…tips to keep your family safe…”
 
Never become complacent about what you ‘think’ your child can and can’t do. S/he can become Houdini when focused on a novel task or having some sort of exciting sensory experience.
​

Have a sign in your window that alerts Emergency Responders to the child with Autism who lives inside. They must also educate themselves about this disorder and learn how to adjust their response to situations that involve an autistic individual. That as the number of autistic children and adults increases in the U.S., it is more likely that first responders will encounter an autistic individual during an emergency situation. You may want to take your child to visit the nearest fire station and introduce yourselves.
 
Siri (2015) said that he had photos of Alex with contact information printed on an engraved bracelet. Besides his name and my name and phone number, I included –

• Nonverbal
• Autism & Epilepsy
• Multiple medications

 
Members of the general public, and even some Safety Officials may NOT know the word ”autistic” or ASD. They are even more unlikely to know what autistic spectrum disorder (ASD) or pervasive developmental disorder (PDD) means. Place a flyer by the front door with photo, description, and other information which may be copied and circulated.
​
Children who have ASD display mild to severe impairments in social interaction and communication. Behavior can be wildly different as well. For example, one autistic child may run away at the sound of a loud siren, whereas another may be attracted to the loud noise. There have been numerous cases of autistic children running back into a burning building and hiding because the scene outside was perceived as too chaotic.
 
Kupietz (2019) tells us that a few commonly cited tendencies of the person with autism which both parents and first responders should know are:

• An affinity for water. Many autistic individuals are attracted to water.
• Tendency to WANDER. They are difficult to locate because they hide, do NOT seek help, and do NOT respond verbally when called.
• Limited ability to communicate. Many autistic children communicate visually rather than verbally. Many can understand what a person is saying, but are NOT able to communicate in return.
• High thresholds of pain. Many individuals have higher than normal thresholds for pain. Just because an individual is not displaying signs of pain does NOT mean they aren’t injured.

• Work directly with a parent or caregiver. Many autistic children will only respond to their caregivers and are often frightened by unfamiliar people.
• Speak clearly, slowly and use literal, direct language. It often appears that an autistic child is NOT paying attention because they are NOT making eye contact, but many do. Remain calm, be patient and use soft, calming tones, and provide plenty of time for an answer.
• Minimize stimulation. Limit the use of sirens, horns and lights, and reduce the number of responders present. If autistic children need to be taken to a shelter, first responders should try to provide the child with his or her own space. Even marking off an area with chairs can help the child establish boundaries. Headphones can also help the child remain calm during chaotic or loud situations.
• Minimize physical contact. Be aware that many autistic children have sensory issues where even common things, like the application of bandages, may cause distress.
• If a physical exam is necessary, start at extremities and work towards the trunk and head. This helps gain the trust of the individual. It can also help to use a favorite toy or item for comfort.

 
Be cautious during safety restraint. If an autistic person must be restrained, First Responders need to realize that many of them, if they are held in place too long, can suffer from mechanical asphyxiation. Do NOT underestimate their strength and determination. The more an autistic person is restrained, the harder they fight because they do NOT understand the situation.
 
Retrieved from – https://medlineplus.gov/childSafety.html
 
Until recently, Hilton (2017), tells us that the voices of autistic people have been absent from the conversation about why wandering is such an issue with this population. Naoki Higashida, a 13 year-old-boy with nonverbal autism, through facilitated communication, answered questions concerning his elopement activity.

Question to Naoki: Why did you WANDER off?

Answer: My body was lured there by ‘something’ outside. As I was walking farther from home, I didn’t feel any fear or anxiety. I had to keep walking on and on. Turning back was NOT permitted, because roads never come to an end. Roads speak to us people with autism, and invite us onward. Until someone brings us back home, we don’t know what we’ve done and then we’re as shocked as anyone.

​Solomon & Lawlor (2018) tell of another boy who left the house and walked down to the corner, then crossed the street. “I can’t remember where I was going but I was getting ready to continue walking when I turned to see someone following me. That was scary, real scary.” Monitoring, surveillance, and tracking technologies are necessary to keep ‘wandering’ persons safe.
 
 
 Avonte’s body was found by a passerby in the East River. The cause of his death was never determined. The medical examiner concluded that he had most likely fallen from an embankment into the East river and drowned. This tragedy “prompted local officials and politicians to call for review of educational policies and school-security protocols for children with disabilities. According to Hilton (2017) Avonte ran out of the unlock school door into the street.
 
The National Center for Missing and Exploited Children so that they are better equipped to handle scenarios that involve missing children with ASD.” The sights and sounds of the city “can be overstimulating and distracting for children and teens with autism, often leading to wandering as a way to escape. Voluntary tracking devices will help our teachers and parents in the event that the child runs away and, God forbid, goes missing,” said Senator Charles E. Schumer.
 
Schumer called for the Department of Justice (DOJ) to create and fund a program to provide voluntary tracking devices for children who have autism or other developmental disorders, for whom “bolting” from parents or caregivers is common. The voluntary program would only be for parents who choose to use the devices.
 
Update:  WASHINGTON – Friday, March 23, 2018 Grassley, Klobuchar, Tillis, Schumer Bill to Aid Families of Missing Autism, Alzheimer’s Patients Passes Congress. Congress today passed bipartisan legislation to help families locate missing loved ones with Alzheimer’s disease, autism and related conditions.  Kevin and Avonte’s Law (S. 2070), named in honor of two boys with autism who perished after wandering from Safety, also supports training for caregivers to prevent and respond to instances of wandering. The bill was included in an omnibus government funding package, which President Trump’s signed into law, March 28, 2018. Retrieved from: https://nationalautismassociation.org/kevin-avontes-law-has-passed/
 
Siri (2015) exclaims that, “My son himself has wandered, and was gone for more than two hours on one occasion, in Manhattan, Upper East Side, no less. What had happened was that Alex had gotten out through the “back” building to the street and decided to walk towards 2nd Avenue and a kindly neighbor in another apartment building realized something was up and actually knew of Alex just from being in the neighborhood.
 
After giving him a sandwich and banana, she called the police, and they jointly returned him to our building. Police suggest a bracelet with the usual “lost” information; however Alex can easily rip that off (and has). My purpose in sharing this is twofold. One, to just help me unwind! The other, to communicate to those who have experienced similar “runs” that they are NOT alone, and that people, our neighbors, the police can be caring and concerned. Some of those involved hugged me and slapped my back in a show of support. I thank them all!
 
< My Thoughts >       “…what these disorders mean…”

People, even professional responders may NOT be familiar with these terms. Or. Worse, may think of a stereotype such as Rainman, whose focus was on data and statistics. But Alex was a ‘wanderer’ who somehow found himself in the back building, which was unfamiliar to him.
 
This made me think about how we routinely take Sonny to the car from the front of the house to get in the car, and out the back to walk in the yard. But what if in a moment of zeal or charge of adrenaline, he found his way into the alley, or the side of the house where he is unfamiliar? Would he quickly become disoriented and probably NOT be able to find his way back inside the house? Yes! 
 
And, of course mistakenly, I would never think to start out looking for him in an unfamiliar direction. While moving through a warren of alleyways, he could be in a whole different neighborhood. Yikes! Then there’s his appearance. He ‘looks so normal’ although may appear to be drunk or a druggie as he staggers around in hot pursuit of something or someone he imagines in his world. He’s a 37-year old adult-child wanderer and may or may not even be clothed when he takes off. Smiles.
 
Lord (2003) says of her son, “If David had a wet shirt he’d be wild to take it off.  Faster than you could blink the shirt would be off. The pants too, if they were wet. That’s why we had the rule –  keep your pants on!  Unless Mom or Dad tells you to take them off.”
 
Jones (2013) says, “This is something you really need to understand if you want to know what it’s like to be me, one Autistic girl, trying desperately to find a place of safety and comfort in this world.” “What you don’t see is the amazing victories I accomplish every day.  Because all the work I have put in has only succeeded in making me appear flawed in your eyes instead of disabled.  I have worked so hard and accomplished so much only to be told that if I work a little harder I might measure up to mediocre."
 
REFERENCES used here are:
 
Barnes, E. W. (2014). Building in Circles: The Best of Autism Mom, eBook Edition.
 
Bogdashina, O. & Casanova, M. (2016). Sensory Perceptual Issues in Autism and Asperger Syndrome, Different Sensory Experiences – Different Perceptual Worlds; Second Edition: London; Philadelphia: Jessica Kingsley Publishers.
 
Donkers, F., Schiput, S., Baranek, G., et al. (2015). Attenuated Auditory Event-Related Potentials & Associations with Atypical Sensory Response Patterns in Children with Autism; Journal of Autism Developmental Disorders; V45, p506–523.
 
Hilton, L. (2017). Avonte's Law: Autism, WANDERing & the Racial Surveillance of Neurological Difference; African American Review, V50:2, p221-235.
 
Jones, S.R. (2013). No You Don’t – Essays from an Unstrange Mind; eBook Edition 2013.
 
Kupietz, K. (2019). Understanding the Volunteer Deficit Will Lead to Better Recruitment & Retention; American Military University.
 
Lord, C. (2003). Rules (for David); eBook Edition.

Phelan, S. (2015). Understanding the Subtypes of Sensory Processing Disorder; Retrieved from nspt4kids.com › Resources › Occupational Therapy.
 
Potvin, J. (2013). Autism Triple Twist: Survival Stories of Parents, Triplets and Autism; eBook Edition.
 
Siri, K. (2015). 101 Tips for the Parents of Boys with Autism (2010) Edition & 1,001 Tips for the Parents of Autistic Boys Edition; eBook Edition.
 
Solomon, O., & Lawlor, M. (2018). Beyond V40.31: Narrative Phenomenology of Wandering in Autism & Dementia; Culture Medicine & Psychiatry Journal; V42, p206-243.

​SUPPORT
 
Senator (2006) reminisces about families, close friends, and certain of Nat’s teachers all became part of what we called his cult, people who believe that he is capable of much because that’s what they want to believe. Nat’s cult has been our lifeline.
 
About friends, Jones (2013) tells us, “I am who I am and I don’t hate being Autistic but it can be really hard to deal with the parts of autism that make it really hard for me to connect with other people.” 
 
“For me, the hardest thing about living Autistic is how much distance it puts between me and others… because of my sensory sensitivities. It’s hard for me to go out in the world all day, every day because the world is filled with bright lights, high-pitched sounds, bright colors, fast movement. The world is exhausting…”
 
Yes!  Sicile-Kira (2014), tells us that persons with ASD “may have a hard time making sense of their world, and so the sameness in certain areas provides a predictability and security missing from an existence that they are having a hard time comprehending”
 
Senator (2006) sums it up by saying that doing research occupied her fully and gave her a sense of purpose. As for Ned, she continues, the information I had dug up gave him some peace, at last. I began to feel more peace of mind, too, as I understood better what we were dealing with and what I would have to do to help Nat.
 
My next step was to locate other people like me. I called the local branch of the Department of Mental Retardation, which ran an autism support group at a nearby office. My first night at the autism support group felt to me like coming home.
 
I should have trusted my gut. Because of the delay in diagnosing Nat, he had missed out on at least a year of potentially helpful therapies. I found strength and relief being with people who had been wounded like me, who had lost the dream of perfect children, who understood how harsh this world can be. I told Ned about the meeting, but going to support groups was NOT his thing.
 
< My Thoughts >    “Support groups…”
 
Some parents who joined online support or interest groups for parents of children with disabilities stated that overall it was helpful. That sometimes you have to ‘shop around’ to find what fits your needs, because many groups take a one-size-fits-all approach.
 
Studies show that parents seek out support groups for vary different reasons. There are those who are looking for ways to cope with the news. Others, who are seeking information, resources, and strategies to help them make connections, take action and move on.
 
Many parents want to find a support or interest group in their area, or a group that they can identify with… such as parents with an older child or adult who has just been diagnosed. Some parents are looking for ways to deal with their anxiety, depression, or seeking an overall sense of well-being. Or, parents who are trying to find other ‘single’ parents, or parents who are on the spectrum themselves. Or parents who have several children on the spectrum, or a large family with only one child on the spectrum.
 
Bonker & Breen (2011) say, “Some of my closest friends are relentless autism moms whom I have never met face-to-face. We have met on the internet, creating our own virtual network of support. I know that I can contact them at any hour with some panicked question and they will send it out on our network to get the answer. Mostly, we talk about poop. Healthy poop is a holy grail in autism land. Enough said.”
 
< My Thoughts > “ … relentless autism moms whom I have never met face-to-face.
 
“We have met on the internet, creating our own virtual network of support.”
 
Clifford & Minnes (2013) researched a support group made up primarily of parents of children with autism from Canada and the United States. They determined that joining an online support group was “useful in making participating parents feel less alone and greatly increasing their knowledge of resources.” Parents reported that attending ‘group’ was more empowering, giving them greater feelings of acceptance towards their child and towards having a child with ASD.
 
One parent said that being able to provide assistance to another group member helped her in return. Another parent felt that she was now able to better deal with her child’s behavior problems. Still other parents emphasized the value of learning with others about how to cope with their stress. Some stated that they were learning better ways to advocate for their child. 
 
While there were others who felt that having more of an agenda or topic schedule would improve the discussions. Also, as a parent mentioned, that it would be advantageous to have a long-term measured response to popular intervention programs, they wanted to have more parents of older children with ASD participating in their support group. There is so much out there and so many like-minds online to have discussions with; it may be worth your time to search them out. Isolation is the enemy of families with autism.

​< My Thoughts >        “…seek ways to be happier …”
 
Senator (2011) No one has a perfect life!  …autism was not all of what Nat was. Autism parents must cope with the negative perceptions and stereotypes and seek ways to be happier and find that happiness with their children and on their own.
 
In her book, Susan tells how different parents found a degree of happiness and their “peace of mind” in novel ways.
 
Nancy Bea focuses on fine-tuning Henry’s medication and his education program, along with the use of visuals and highly organized schedules.
 
Kim says her kids love amusement parks and carousels… they love to spin …we never let autism trap us in our home.
 
For Cathy, an ‘aupair’ solution was a godsend. Of course, not everyone can afford that… but, perhaps you can find a local college student, guy or gal, to board with you. (Maybe even someone who is studying child behavior or in a teacher education program.)
 
For some it’s belly dancing, for others is continuing with hobbies they love (painting, cartooning, & doodling).  There are those who write poetry, join competitions and escape for awhile.
 
Rebecca and Beth enjoy scrapbooking… alone, creating, recharging. Then later sharing with the family who love to see what they’ve done with their pictures.
 
Alastair has built a nursery with a huge collection of bonsai trees. His wife gave up smoking and began running marathons.
 
Bonnie is “so into having and caring for Beta fish that my family has threatened intervention…”
 
Eileen discovered motorcycling as her way of coping and creating balance. “It is so much fun to play dress up… put on my leathers and my biggest earrings and go for a ride along the ocean…”
 
Susan reminded me that spiritual grounding can be an important aspect of self-care. “I go to yoga class and to Zen meditation…”
 
Amy feels like she’s accomplished something when after a workout, she feels sweat pouring down her face… "I have burned four hundred calories with exhausting exercise. Revitalized by a hot shower and renewed spirit."
 
< My Thoughts >        “…For me, Sara Luker… its Tai Chi! Support can be a creative and inspirational thing. Smiles
 
Senator (2011) encourages us by saying, “The sun will come up tomorrow and we will still have autism within our family.  I can choose how I live it.”
 
We do not have to trade ourselves for our children, or our happiness for our children’s happiness. Even something as confounding and difficult as autism in the family is not the end of a happy life. Once we understand that, we will get there and it will all be OK.
 
One day you will feel that something inside you has shifted, lightened. When you look at your child, you no longer see a mass of problems, a broken thing to be fixed; you see your kid, just your kid.   
 
One day you will know that it’s just your life, warts, autism, and all. And you can’t wait to start living it to its fullest. Once you know this…you have just won the game.
 
References used here:
 
Bonker & Breen (2011). I Am In Here: The Journey of a Child with Autism Who Cannot Speak but Finds Her Voice; eBook Edition.
 
Clifford, T. & Minnes, P. (2013). Logging On: Evaluating an Online Support Group for Parents of Children with Autism Spectrum Disorders; Journal of Autism & Developmental Disorders; 43;1662-675.
 
Jones, S. R. (2013). No You Don’t – Essays from an Unstrange Mind; eBook Edition.
 
Senator, S. (2006). Making Peace with Autism: One Family’s Story of Struggle; Discovery & Unexpected eBook Edition.
 
Senator, S. (2011). The Autism Mom’s Survival Guide (for Dad’s, too!): Creating a Balanced and Happy Life While Raising a Child with Autism; eBook Edition.
 
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, New York: Penguin Random House Company.