Missionary Renegade: "Transition to summer" for Thursday, 31 May 2p18 from Autism Speaks in New York, New York, United States

Thursday, May 31, 2018

"Transition to summer" for Thursday, 31 May 2p18 from Autism Speaks in New York, New York, United States

"Transition to summer" for Thursday, 31 May 2p18 from Autism Speaks in New York, New York, United States

E-Speaks eNewsletter
Summer is here! Summer is a fun and exciting time of year, but for some, the changes in routine and environment can present challenges and safety concerns. Autism Speaks has put together resources and advice from the experts to help you adjust to these changes and make the summer safe and enjoyable for all!
Questions about transitioning to summer and summer safety? Join our live chat today

On Thursday, May 31 at 3:30 p.m. ET, Autism Speaks staff members will be hosting a Facebook Live chat to answer your questions about the changes that happen when school is out. For additional resources, contact our Autism Response Team today.

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Autism and resistance to changes in daily routine

The changes that take place when summer temperatures rise, such as wearing new clothing, can be difficult for people with autism. In this post, psychologist Stephanie Weber shares some research-based strategies for helping children with autism deal with these changes in daily routine.

Autism and resistance to the change from winter to summer clothes

My grandson [who has autism] has to have his coat on when going outside even when it's hot, and he won't wear shorts. What can we do?

Today’s “Got Questions?” answer is by psychologist Stephanie Weber, of the Kelly O’Leary Center for Autism Spectrum Disorders at Cincinnati Children’s Hospital Medical Center. The center and hospital are part of the Autism Speaks Autism Treatment Network (ATN).

Editor’s note: The following information is not meant to diagnose or treat and should not take the place of personal consultation, as appropriate, with a qualified healthcare professional and/or behavioral therapist.

Thanks for your question. Change is hard for everyone, but harder for some. Insistence on routine and resistance to change are particularly common among those who have autism.
Your grandson may feel that putting on his coat is an important step in his daily routine. In other words, not completing this step might cause anxiety because it goes against his need for consistency – despite the changing weather.
I hope that he is receiving behavioral intervention for his autism. His behavioral therapist is best suited to assess his challenges and strengths and use them to personalize a therapy program that addresses the issues behind his reluctance to transition to warm weather clothing. No doubt, these transition skills will help him more broadly in life.
Meanwhile, I can offer some research-based strategies for helping your grandson deal with this change in his daily routine.
In helping someone with autism make a difficult change, two things are important: Clear communication and reinforcement. It’s also crucial to tailor the approach to match your grandson’s developmental level.
Tailoring the approach to developmental level
In younger children and people more cognitively impaired, a basic behavioral strategy is to use a favorite toy, activity or other small and immediate reward to support his efforts. (You know what your grandson likes – within reason, of course.)
For instance, explain that he will receive the reward of, say, watching a Barney video with you, after helping you with an important task: Placing his heavier cold-weather clothing in a bin and saying “goodbye” to it until cooler weather returns in fall.
Praise him warmly and immediately provide the reward.
Consider putting the bin of clothing in an inaccessible place such as a locked closet or attic so he won’t be tempted to pull the clothing items out again.
Many people, whether or not they have autism, simply don’t like to hear the word, “No.” So if your grandson starts asking for the cold-weather clothing, I suggest telling him that they are “not available,” rather than telling him. “No coat” or “No long pants.”

If your grandson responds better to visual than verbal cues – as is true of many people with autism – I encourage you to copy or make a visual support that looks something like this:

For more information on using visual supports, see “Visual Supports and Autism Spectrum Disorder,” an Autism Speaks ATN/AIR-P tool kit. Follow the link for free download.
Next, it’s important to offer him a choice of a few warm-weather clothing items. Here again, visual supports may work well to help him understand his options.
In your grandson’s case, a great visual support might be choice board, or “menu,” of clothing options. It might be fun for the two of you to take pictures of his summer clothes and assemble them on the board. It might work well to have shirts on one side and pants on the other. Then each day, invite him to select a picture of the shirt and pair of pants he wants to wear.
Remember to warmly praise each small step in the right direction. Consider a small reward such as a sticker – or a token toward a larger reward – for each success such as trying on a pair of shorts. Depending on your grandson, you may need to approach the goal gradually – say, by briefly touching a pair of shorts one day, then touching the shorts for, say, 10 seconds another day and moving all the way up to putting the shorts on.
Another strategy backed by research is to create and read a personalized teaching story with your grandson. With simple language and drawings or photos, these stories can help people with autism understand expectations for different situations.
In your case, I suggest pictures of your grandson’s summer and winter clothing items. Then, write short sentences (based on your grandson’s level of understanding) that outline the expectations.
For example:

Winter is gone. Summertime is here.

I need to put my coat and long pants away until fall.

I need to wear warm weather clothes like shorts and T-shirts.

When I wear my warm weather clothes, my family is proud of me!
You can further personalize the story by including pictures of your grandson and/or describing him earning a favorite activity or treat by wearing his summer clothes.
For more examples of autism-friendly teaching stories you can personalize
(developed by Autism Speaks and the University of Washington)
Click Here
Cognitive behavioral approaches
If your grandson is older and/or more intellectually able, cognitive behavioral therapy (CBT) may work well to ease any anxiety he has around this change in his routine. Considerable research has gone into adapting CBT for children and adults who have autism, with positive results. Techniques include challenging negative thoughts with logic, role-playing and modeling courageous behavior, and gradual exposure to feared situations – in this instance, going outside without a coat.
Autism researcher and cognitive behavioral therapist Jeffrey Wood has written several helpful advice posts on applying CBT techniques to ease anxious situations in children and adults who have autism. You can find them in the “Got Questions?” archive here.
The importance of consistency
Whatever your strategy, it’s vitally important for you to be calm, firm and consistent in your response. Once you’ve made clear that the coat is not available, don’t pull it out to stop misbehavior. Conversely, provide rewards promptly – for example right after he puts on his shorts or T-shirt.
Consider sensory issues
Sensory sensitivities might also be at play in addition to your grandson’s desire for familiar daily rituals. We know that many people on the autism spectrum prefer relatively snug-fitting clothing that covers their arms and legs. The snug clothing may help provide a sense of where the body is in space – sometimes called the sense of proprioception. An occupational therapist experienced with autism and sensory issues can assess your son and, if appropriate, design an intervention to help.
Thank you again for your question. Please let us know how these strategies work for you and your grandson by emailing us again at gotquestions@autismspeaks.org.

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Help camps a

nd recreation organizations be more inclusive of kids with autism

Our "Leading the Way" tool kit prepares community organizations like summer camps to integrate youth with autism into existing programs, communicate with parents and train their staff. Share it with programs near you.

Leading the Way: Autism-Friendly Youth Organizations

Unfortunately, boys and girls with autism often face barriers to participating fully in youth community organizations. And so with help from respected experts in the field of autism and special education, experienced parents and caregivers, we have created Leading the Way: Autism-Friendly Youth Organizations, a guide for organizations to ensure that youth with autism have the same formative experiences through community programs that are available to their typical peers.
The purpose of this guide is to better prepare community organizations to serve youth and families with autism. The information will help organizations learn to integrate youth with autism into existing programs, communicate with parents, and train their staff.
Click here to download Leading the Way: Autism-Friendly Youth Organizations Guide. You can also download individual sections at the links below:

The Importance of Including Youth with Autism in Community Programs
In the video below, Dr. Lynn Koegel, Clinical Director of UCSB's Koegel Autism Center and Broad Asperger Center, discusses the importance of autism-friendly youth organizations. Dr. Koegel calls inclusion "a win-win for everyone!"

Youth Participation Survey

In 2012, Autism Speaks conducted a national survey on community youth organizations. More than 1,000 people responded from 48 states. Through this effort, we have learned more about the barriers youth with autism face in fully participating in these programs and have developed a better understanding of what would help organizations successfully include young people with autism.
Click here to read a blog post by Marianne Sullivan about the results of this interesting survey!
Family Services Community Grants Spotlight
The Autism Speaks Community Grants program has funded many grants that focus on inclusion. Examples include:
Autism Empowerment's Autism and Scouting Leadership Training Program
Funded in 2012
Autism Empowerment
This program provides motivational opportunities for adolescents with ASD to practice and gain appropriate social skills in natural settings with their typically developing peers. Click here to learn more!
Utilizing Motivational Variables to Develop a Model of Social Facilitation in the School Environment to Enhance Social Competence for Adolescents in ASD
Funded in 2010
UCSB Koegel Autism Center
This program seeks to train leaders in a variety of scouting venues, techniques and skills to effectively work with children and teens with autism and their families. Click here to learn more!
Click here to search the Autism Speaks Grants database to learn more about what we have funded!
News:
Feds: Disabled students must get opportunity to play sports
On January 25, Education Secretary Arne Duncan announced in a statement that schools must provide opportunities for disabled students to play sports.
NJ.com

Autism Speaks Resource Guide

The Autism Speaks Resource Guide contains over 50,000 local resources, including Autism Organizations, Recreation and Community Activities, After School Programs, Social Skills Groups, and more! All of these resources have been submitted to us by professionals involved with the organizations, or families who have had positive experiences.
It is the largest most comprehensive autism database in the world and contains local services in all 50 states!
Click here to search for programs in your local area!

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Autism and wandering: Parents ask how they can safeguard their child

In this Got Questions post, a developmental-behavioral pediatrician in the Autism Speaks Autism Treatment Network shares insights and advice with the parents of a child with autism prone to wandering towards highways to help keep him safe.

Autism & Highways: Is Attraction Common? How Can We Safeguard our Son?

Insights and advice from a developmental-behavioral pediatrician in the Autism Speaks Autism Treatment Network

“We keep reading news reports about both children and adults wandering or running onto highways and getting hit by cars. Is there something about highways that attracts them? We’ve noticed that our teenager likes to stand by the side of the road when cars whoosh by. How can we keep him safe?”
Editor’s note: The following information is not meant to diagnose or treat and should not take the place of personal consultation, as appropriate, with a qualified healthcare professional and/or behavioral therapist.

Today’s “Got Questions?” response is from developmental-behavioral pediatrician Peter Chung, of the Center for Autism & Neurodevelopmental Disordersat the University of California, Irvine. The center is one of 14 sites in the Autism Speaks Autism Treatment Network (ATN).
Thank you for your question. You are correct that wandering into dangerous situations is a common problem among both children and adults affected by autism.
First and most importantly, I recommend that you discuss your concerns with your son’s healthcare providers and therapists so they can help support you in developing a plan to increase his safety.
No matter why your son tends to wander close to roads, we know it’s dangerous because of the potential for injury from falls, vehicle accidents, drowning, abduction and dehydration.
Yet in developing a safety plan, it’s important to understand the reason behind his behavior. Is he wandering towardsthe road because he’s fascinated by cars? Or is he trying to get away from something he finds stressful?
Both tendencies are common among those with autism. Some have a tendency to wander toward objects of interest, sometimes heedless of associated dangers. Others tend to wander or bolt to get away from something they want to avoid.
Like your son, many individuals with autism appear to be particularly drawn to roadways and moving cars. Some appear to enjoy the visual stimulation provided by the spinning wheels or the many different colors, shapes and sizes of vehicles. Others seem to be drawn to the sounds and sensations of cars rushing by. Still others have a fascination with street lights or even highway signs.
An important detective game
If your teenager is non-verbal, you may need to play detective to figure out what exactly is attracting him. Look for patterns in the way he behaves. Is there any pattern to when or under what situations he gravitates to the roadside? In essence, you’re looking for possible triggers for the behavior.
Over time, a record of these observations may help you identify underlying similarities in the situations that occur before your son wanders dangerously close to a road. We call this the “antecedent” for the behavior.
Antecedents can be immediate and specific events like spotting something he likes – say, a particular kind of vehicle such as a big truck.
Alternately, you might notice that your son tends to wander toward the road at a certain time of day or just before or after an activity. For example, I’ve had patients who tend to wander when they’re bored or frustrated – for example, after their parents take away Minecraft and Angry Birds.
I encourage you to likewise consider whether your son’s tendency to wander close to the road is worse when he’s under stress or wanting to avoid an activity or stimulus he doesn’t like. If this may be the case, your detective work should focus on identifying the “negative” situation or stimulus that’s driving him.
If you don’t see an obvious pattern, a behavioral therapist or other autism specialist might be able to help you identify the triggers. Once identified, you can work together to remove the stimulus or otherwise help ease your son’s anxiety around it.
Encouraging safe behavior
Once you’ve figured out the motivation for the behavior, the next step would be to modify your son’s environment to foster safety. I suggest placing a visual reminder of safe behaviors on doors. For example, the Big Red Safety Toolkit has printable “STOP” signs you can tape to doors and windows.
Another option is to reinforce the visual STOP sign message with audible door and window alarms. These don’t have to be the harsh alarms that prove so distressing for many of those who have with sensory issues. The National Autism Alliance, for example, has alarms that trigger a door chime.
Visual supports and social stories
I likewise recommend using visual supports to write, illustrate and share a social story about practicing safe behaviors near roadways and cars. You can customize the social story with your own pictures using templates from AWAARE which can be found here.
Exploring safer alternatives
In addition, I suggest exploring whether you can find some safer “replacement behaviors” for your son’s roadside fascination.
For example, if his attraction involves looking at cars, you can create enjoyable opportunities to share this interest with him. These activities might include watching videos of cars, reading about cars or playing with toy cars.
If your son’s highway fascination is driven by the sensory experience, an occupational therapist trained in sensory integration techniques can help identify activities that replicate the sensations he likes in a safer environment. For example, if he likes listening to car sounds and feeling the whoosh of cars rushing by, he might enjoy sitting in a sensory swing while listening to a recording of highway sounds.
Alerting neighbors
If you haven’t already, I urge you to alert your neighbors to your son’s tendencies and make clear that you appreciate their alerting you if they see your son by the road unsupervised. You might also consider one of the growing number of wearable global positioning satellite (GPS) and radio frequency (RF) locating devices. In addition to pocket-sized models, options include small devices that can be fitted into accessories like wristwatches or shoes. A neighbor alert form can be found below.
Autism Speaks has recently provided a grant to Project Lifesaver to protect individuals with autism prone to wandering through a multi-faceted approach involving technology, training and education. Also see the following resources from Autism Speaks:

I hope these insights and suggestions are useful. Please let us know how you and your son are doing with a comment below or by emailing us again at GotQuestions@AutismSpeaks.org.
Editor’s note: The above information is not meant to diagnose or treat and should not take the place of personal consultation, as appropriate, with a qualified healthcare professional and/or behavioral therapist.

* Learn more about the Autism Speaks Autism Treatment Network here.
* Find the ATN center nearest you here.
* Explore our archive of ATN expert-advice blogs and news stories here.
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The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view