Understanding Autism with the Hula Hoop Analogy

hula-hoopsThis article was contributed by Nancy Popkin, Autism Resource Specialist in the Charlotte region and mom to a son with autism.

One of the keys to parenting, working with, or just hanging out with an individual with autism is to truly understand the core characteristics of autism. Applying these core characteristics enhances our understanding of why our child, student, employee, or friend might do some of the things they do. In doing this, we are able to anticipate challenges, develop strategies, and in some cases, find those extra ounces of patience that allow us to support them when challenges arise. Over the years, I have developed something I call “The Hula Hoop Analogy” to help me teach others to understand the individuals with autism in their lives. Not only does this help me explain aspects of autism to others, but it has allowed me to help my son understand himself. Here’s how it goes:

Imagine that every person with autism has an invisible Hula Hoop™ around themselves. They are in the center of the Hula Hoop, and everything inside the Hula Hoop matters to them. Everything outside of Hula Hoop, not so much. And this makes sense, because the root of the word autism is “auto” which means “self.” This is not to say that individuals with autism are selfish, but their perspective of the world is sometimes or often limited to their own perspective. And this helps us understand one of those autism characteristics. Individuals with autism, to varying degrees, struggle with taking the perspective of another. They have difficulty understanding how their actions may affect someone else. And this is because of this invisible Hula Hoop.

This thinking can be applied to help us understand other core characteristics of autism. For instance, we know that individuals with autism benefit greatly by having a visual schedule or visual cues to help them navigate their world. Often though, consideration is not given to the location of the schedule. To be effective, it must be within the invisible Hula Hoop for that individual. This is why, if the schedule for a classroom is in the front of the room for all students to see, the student with autism may not know it applies to them and will not attend to it. The schedule might need to be on their desk or on a notebook. At home, the schedule and visual cues need to be where they will be processed effectively or where the task or activity takes place.

We can apply this analogy to understanding social differences, too. Individuals with autism often do not respond to their name unless you are very close. It is like we need to get in their Hula Hoop to get their attention. At school, if the teacher is talking at the front of the room, often the student with autism will not process what the teacher is saying. The teacher isn’t in the Hula Hoop, so it’s as if what they are saying doesn’t apply to the student. And sometimes, individuals with autism don’t recognize personal space. This may be because they feel like you need to be in their Hula Hoop to interact with them.

The size of the Hula Hoop will vary from one individual to another. It also might expand and contract depending on the individual’s abilities, stress levels, and environment. Individuals with autism often have difficulty processing a lot of information at once. If they are overwhelmed with information (sensory or otherwise), the Hula Hoop will get smaller, and they may not be able to attend to as much information as when they are calm. This is important to know when helping someone manage themselves when they are upset. If the tools and strategies used to help them regain their sense of calm are not in close proximity when the Hula Hoop contracts, it will be harder to get them calm. This is why many of the visual cues and other supports for someone with autism need to be portable and with them at all times.

Not only does the Hula Hoop Analogy apply to physical space, it also applies to temporal space and individuals’ ability to manage time. Imagine the Hula Hoop represents this moment in time. Individuals with autism are most comfortable living in the present. Thinking about the past might be uncomfortable for them and they might resist talking about past events. The exception to this is when reliving past events repeatedly as a way to stim.

But more significantly, this temporal effect has an impact on planning for the future. Individuals with autism are not good at thinking about what might happen in the future and planning accordingly. This affects things like figuring out what jacket to wear or whether to grab an umbrella for later. It affects planning what work to get done now and what to put off for later.

The good news is, with practice we can help an individual with autism expand their invisible Hula Hoop to take in more and more information, include more people, and anticipate what lies ahead. But we need to start this process where they are, within their Hula Hoop. And when issues arise, consider that maybe this invisible Hula Hoop has gotten in the way. That is when we step inside their Hula Hoop, with all the patience we can muster, to guide them into the future.

 

Nancy Popkin can be reached at npopkin@autismsociety-nc.org or 704-894-9678.

NC ABLE Program Starts January 26

This article was contributed by Jennifer Mahan, Director of Advocacy and Public Policy.

Beginning Thursday, January 26, people with disabilities and their families can save and invest without losing means-tested benefits. ABLE accounts are affordable, tax-advantaged accounts that allow eligible individuals with physical or cognitive disabilities that occurred before the age of 26 to save up to $14,000 per year without interfering with certain means-tested federal and state benefits programs, including Medicaid and Supplemental Security Income (SSI). Accounts can be opened by the person with a disability as well as parents or guardians on behalf of qualifying individuals with disabilities.

Funds in an ABLE account can be used to pay for “qualified disability expenses” (QDEs), including rent and housing, transportation, educational needs, employment training and supports, assistive technology, health care and therapies, and other approved expenses.

North Carolina has joined the National ABLE Alliance, a group of 14 states that united to offer high-quality ABLE accounts at a reasonable cost. NC ABLE accounts are open to eligible individuals across the country for a fee of $45 per year. They carry no enrollment fees or minimum startup balances, and you can manage funds through an online portal.

Staring March 31, NC ABLE will also offer a program debit card and checking option that gives people a quick and easy way to pay for QDEs from their ABLE account’s funds.

Below is more information from the Autism Society of North Carolina about ABLE and NC’s program.

For all of the details, go directly to the website of the NC Office of the State Treasurer’s ABLE information page.

To sign up, go to NC.SaveWithABLE.com starting Thursday, January 26. (The page will not be active until then.) Accounts are opened online only at this time.

 

What You Should Know About ABLE Accounts

One account per individual with a disability

Parents can open on behalf of minor children. Guardians can open on behalf of eligible individuals for whom they have guardianship.

At this time, existing 529 college savings plans cannot be rolled over into ABLE accounts.

Please be aware, if an individual with an ABLE account passes away, the state or federal government may require money in an ABLE account be used to repay the government for services provided by Medicaid.

There is a flat fee of $45 per year. One-fourth of the $45 is taken out of the account each quarter over the year.

For investment account options, additional fees will apply (as with other types of investment accounts). Please see NC.SaveWithABLE.com or a financial planner for information about how investment fees are calculated.

ABLE accounts are NOT a replacement for special-needs trusts. Trusts may have other advantages for an individual or family. An individual can have a trust and an ABLE account. If you have an existing trust or need to invest or save more than $14,000 per year, please see a financial planner to discuss your options.

Be aware: Money goes into the account after tax. The distribution of funds is tax-free for qualifying expenses.

 

Eligibility

The law says those eligible have a “medically determinable physical or mental impairment” that occurred before the age of 26. This includes intellectual and/or developmental disabilities, autism, brain injuries before age 26, and other conditions.

The onset must be before the age of 26, but not necessarily the diagnosis. IDD conditions are generally present at birth or in early childhood even if diagnosed later.

Individuals can self-certify that they qualify to open an account. Keep in mind that if the IRS audits for use of an ABLE account, individuals must provide proof of their “medically determinable physical or mental impairment” before age 26. This typically means evidence of a diagnosis by a health-care professional, including mental/cognitive care professionals.

 

Signing Up

Only online signup will be available this week. Paper signup will be available at a later time.

Signup for investment accounts will start January 26.

Signup for debit cards and “checking” type accounts will be an option after March 31. If you plan to move money in and out of the account to pay for weekly or monthly expenses, a debit or checking option may be best. There are no additional fees for debit and checking options. Debit cards will be able to withdraw funds through Allpoints ATMs as well. See NC.SaveWithABLE.com for more info.

Customer-service staff can assist with online signup.

Paper statements can be requested; the default for accounts is electronic delivery of account statements.

 

Contributions and Income

Contributions can be one-time, recurring, or from payroll deposit.

Investment account options are typically for long-term needs and large one-time expenses and debit/checking for ongoing or recurring expenses. Debit cards/checking can be used to pay for one-time or recurring expenses. You will determine what works best for you.

Funds can be moved based on the current needs of the individual. Funds can be pulled from investment or debit/checking accounts for QDEs, though the process may be different.

ABLE accounts cannot be used to “hide” income. Gifts, earned income from work, and Social Security payments to the individual are considered income. An ABLE account can help a person save up to $14,000 per year (up to $100,000) with tax advantages while setting those ABLE funds aside when benefits programs take into account what the person has in savings.

Money earned by or given to the person is still considered income. Families who want to gift to the person with an ABLE account should direct those funds to the ABLE account. NC ABLE will issue “coupons” and instructions on how to do so.

There are other programs that people with disabilities can use if they are earning income. Medicaid allows someone to “buy into” their Medicaid benefits if they work and earn too much income. See NC DMA for more information.

 

Certifying Qualified Disability Expenses (QDEs)

It is up to the account-holder and/or their guardian to track their QDEs.

The NC ABLE program will not require individuals to certify their QDEs. This means you will not have to submit proof of expenses on a monthly or yearly basis.

HOWEVER, the IRS is likely to audit some percentage of ABLE account-holders as part of assuring that the program is being used appropriately. ABLE account-holders and/or their guardians should keep records of expenses in case of an IRS audit.

Accounts are tax-free as long as they are used for QDEs. If not, the IRS may recoup taxes from account-holders.

QDEs are determined by federal regulations and may be subject to change over time. The list maintained by the IRS for their auditing purposes is available on the NC ABLE website.

 

Who “Owns” the Account?

Under 18: the parent or guardian owns the account.

Over 18: the individual account-holder (person with the disability) owns the account.

Over 18, but under some form of guardianship: the account is still owned by the individual with the disability, but the account is controlled by the legal guardian or person with power of attorney.

There are options to monitor the accounts without having access. Please see NC.SaveWithABLE.com for more info.

 

If you have questions about this or other public policy issues, please contact Jennifer Mahan, Director of Advocacy and Public Policy at ASNC, at jmahan@autismsociety-nc.org or 919-865-5068.

Staying Safe: ASNC Can Help

As parents, we do all we can to make sure that our children understand how to remain safe. What’s “stranger danger”? How do you cross the road safely? How do you ask for help when you get lost or separated? But if your child has autism, you may face additional challenges, such as wandering (also called elopement, bolting, or running).

In a study published by the journal Pediatrics, 49 percent – almost half – of families reported that their child with autism had attempted to elope at least once after age 4. While they were missing, 24 percent of those children were in danger of drowning, and 65 percent were in danger of being hurt in traffic. No one wants to see a tragic outcome for kids who wander.

 

Online resources

If you have a child who is a “runner,” we have free information and tools that can help.

  • Download our tips sheet on wandering prevention that offers practical ways to help your child understand safety issues and inform authorities about their needs and interests.
  • Print and complete the Personal Information Record sheet and share it with law enforcement, your 911 center, and other first-responder agencies. This can help them identify your child and understand how to interact effectively with them.
  • Request our free ID cards that can be laminated and teach your child how to carry one to share with a first responder.
  • Order our Person with Autism decals for your car and home that help first responders recognize that occupants might not respond in a typical manner.

Prevention tips

  • Do not isolate yourself: Share and explain autism to your neighbors, family and friends. Share your contact info and ask whether they would be willing to help look if your child wanders. Keep a list of those who say yes.
  • Meet your first responders: Take your child to the fire station, police station, and EMS. Share the personal information record with them and introduce your child. This helps your child and the first responders.
  • Secure your home: Consider ways to keep your home secure. Examples include a home security system, window locks, door alerts, etc.  If your yard is not fenced, you may want to consider that as an option for keeping your child from wandering. If you own a pool, make sure it’s not accessible without adult supervision.
  • Working with schools and day cares: Share any concerns about wandering with your child’s teachers. Let them know what you want them to do if your child wanders and make safety goals part of your child’s IEP.
  • Teaching your child: Demonstrate and help your child learn safety skills such as what road signs mean, how to cross a street safely, and how to read traffic lights. Identify safe places (such as fire or police stations) in your neighborhood and practice going to them and waiting for help or an adult. Use visual or written cues to teach what to do in different situations, and practice sharing contact information. Teach children who are nonverbal how to carry and show an ID card.
  • Attend one of our workshops: We offer a workshop called “Staying Two Steps Ahead: Safety Considerations for Caregivers.” We will next offer it as a webinar on March 13. Register now.

 

We all want our children to grow up safely. Please contact an ASNC Autism Resource Specialist near you for additional information and resources on this important topic.

Sensory-Friendly Activities Ease Winter Blues

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“Oh, the weather outside is frightful…”

In these long winter months, many NC families are looking for indoor entertainment. It’s too cold to jump on the backyard trampoline, too icy to run at the park. Many will turn to indoor play areas, shows, and movies.

But these are not always good options for families who have loved ones with autism. Individuals with autism often are sensitive to sensory stimuli, and they may react in ways that are not typical, which can lead to judgment by others. They need a flexible and accepting environment so they can enjoy the activity.

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See a photo story from DPAC’s “Grinch”: https://spark.adobe.com/page/NBM0fNDJ6NbTF/

Fortunately, more and more businesses and organizations are offering “sensory-friendly” options so individuals with autism and their families can enjoy the same activities as other families. An example last month was the “Dr. Seuss’ How the Grinch Stole Christmas! The Musical” at Durham Performing Arts Center, made possible by sponsors Duke Health and SunTrust. DPAC’s special matinee included adjustments to the production, including fewer loud noises and flashing lights; designated quiet sections; and volunteers to assist families.

The showing was a great success and much appreciated by area families. One parent wrote, “Thank you so much for this special show! My 6-year-old son had the best time of his life. It was such a relief to be in a theater and know your child can feel free to be who he is, without having to worry. He laughed, sang, spent some time in the aisle, and wasn’t overwhelmed by the lights or sounds (as he sometimes is).”

grinch 1.jpgAnother said, “I cannot thank you enough for today’s performance. Hundreds of families in our community went to the theater today that would have otherwise not considered it. When you have a special needs child, it is hard to get out of the house sometimes. It is hard to spend money on events that you may have to walk out of within minutes if your child’s behavior isn’t in line with norms. Today, DPAC gave us a welcoming environment. We enjoyed a show and felt the support of DPAC staff and the other families surrounding us. Children around me were laughing and cheering.”

We thank DPAC, Duke Health, and SunTrust for making this experience possible for our families!

Find activities near you

Some movie theaters in NC now offer sensory-friendly shows; check with your local theater. AMC Theatres offers them in the Charlotte and Triangle areas, saying “we turn the lights up, and turn the sound down, so you can get up, dance, walk, shout or sing! Our Sensory Friendly Film program is available on the second and fourth Saturday (family-friendly) and Tuesday evenings (mature audiences) of every month.” Check their website for more information.

ASNC Chapters are another great resource for sensory-friendly activities as well as social events that are family-friendly with a welcoming atmosphere. A few examples:

Find events on our calendar; find a Chapter near you on our website.

And finally, be sure to join ASNC’s Facebook group, where events and activities from around the state are posted.

Chef Pepper Jack’s Food Drive

jack-food-driveWhen 17-year-old Jack Cullen began to notice people on streets holding signs requesting donations, food, or jobs, he started asking questions. He wanted to understand why they didn’t have food or jobs. He wondered whether they had homes or other belongings. The growing concern that Jack displayed led his Autism Support Professional, Holly, to ask him whether he would like to help people with these kinds of needs. Jack enthusiastically embraced the idea, and together, they began looking for ways that they could serve people whose most basic needs were unmet.

After doing their research, Jack and Holly chose to become involved with the local food bank, but it was in an old warehouse that did not have air conditioning, and the noise from the machinery was very loud. This environment presented a variety of sensory challenges that could have prevented Jack, who has Autism Spectrum Disorder, from becoming involved. But instead of allowing those barriers to limit Jack, Holly helped him find a different approach. Instead of doing work inside the food bank, after food was already collected, Jack worked with Holly on a plan for his own food drive. This allowed him to collect and sort the food in a suitable environment, before delivering it to the food bank.

Together, Holly and Jack created flyers and collection bins for the food drive. Jack named his endeavor Chef Pepper Jack’s Food Drive, based on his favorite game, Skylanders. Holly coached him on how to talk to family, friends, and community members to solicit donations. He passed out flyers and set up collection bins, and it wasn’t long before donations starting coming in! As his box filled, he sorted the donations, loaded the boxes into the car, and, with Holly’s help, took them to the food bank. Jack also sent handwritten thank-you cards to friends and family who had made donations.

So far, Jack has made three trips to the food bank, with his biggest donation weighing in at 120 pounds! Jack’s original goal was to collect 500 pounds, but when asked whether he plans to keep the food drive going, he answered, “Yes! Absolutely!”

The Autism Society of NC provides a variety of community-based services that enable individuals with ASD not only to receive the day-to-day support they need and to gain valuable skills, but also to find and engage in opportunities to become involved in their communities in a meaningful way. Jack’s story is just one example of how ASNC is committed to empowering individuals to connect with others and achieve goals that bring them personal satisfaction and purpose. Learn more here or contact us at 800-442-2762.

’Tis the Season … for Opportunities!

 

Vickie Dieter is an Autism Resource Specialist in the Catawba Valley region and mom to a son with autism.

Many families who have children and other family members with an Autism Spectrum Disorder have a collection of war stories and battle scars (emotional and physical) associated with the holiday season. Children, youth, and adults with autism who already struggle with over-stimulation, change, and disruption are bombarded with a barrage of sights, smells, sounds, schedule changes, and challenging social situations during the holidays. While many families enjoy the holidays and find these sensory and social experiences exciting and pleasurable, they can cause increased anxiety and discomfort for people with ASD. But, as difficult as the season can be, the holidays offer unique learning opportunities for teaching your child coping, social, and academic skills.

The holidays were not pleasant for our child and family, especially during his first six years or so. I remember feeling helpless and desperate to do SOMETHING to make the holidays more tolerable. It helped me when I was able to shift my focus beyond the difficulties associated with the holidays and take a proactive approach to help my son have successful, positive experiences. Focusing my efforts on pinpointing the root of my son’s behaviors and researching strategies to help him cope in difficult situations helped me gain a sense of control. The perception I had of our family as prisoners of our son’s disability changed when the strategies I tried with him began to have positive results. Over time, my son became more and more engaged in holiday activities, and our family has enjoyed many traditions and celebrations with family and friends.

I hope the following ideas will help your child and family share a more meaningful and positive holiday experience:

Use visual images, objects, videos, songs, and foods associated with the holidays to explain abstract concepts and deeper meanings of holiday traditions and religious beliefs.

Use a nativity set to help your child understand the meaning of Christmas.

A dreidel can be used to explain a historical element of Hanukah.

Turkey, corn, and other foods (pictures, real food, or play food) can be used to represent the pilgrims and Native Americans coming together for the first Thanksgiving.

Incorporate the Kinara, a visual symbol of African history and heritage in discussions about Kwanzaa.

Help your child understand what other people are thinking and feeling through the use of social stories, books, and videos.

For example, the characters in Dr. Seuss’ How the Grinch Stole Christmas have exaggerated facial expressions that can make it easier for children to identify the characters’ feelings. When reading this book with your child, help him or her make the connection between the characters’ facial expressions and what they are feeling. Use the context of the story to discuss the reasons that the characters feel happy, sad, angry, afraid, etc. Talk about how the characters’ actions affect the feelings and thoughts of others in the story.

Use your child’s preferred interests to engage him or her in holiday activities.

For example, for a child who has a strong interest in tornados, you might modify The Night Before Christmas story to include a tornado that interferes with Santa’s flight from the North Pole.

If your child has an intense interest in flags, try to engage him or her in a game to match flags to their respective countries. Explore holiday traditions and practices of each country and compare how your family’s traditions and beliefs are alike or different from people in other countries.

Use holiday symbols and images to promote academic skills.

Sort unbreakable ornaments by color, shape, type, or category.

Label holiday items throughout your home with words written on sticky notes or post cards, e.g. Santa, tree, pumpkin, candle, gift, Zawadi, gelt.

Practice addition and subtraction using holiday objects as manipulatives.

Work on sequencing with pictures, objects, stories, etc. Drawing or building a snowman is a fun visual sequencing activity.

Strategies to teach coping skills

Employ strategies that have worked for your child in the past but are no longer necessary under normal circumstances. For example, if your child responded well to the use of visuals but has “outgrown” the need for them, consider trying visual schedules, cues, or gestures again to help him or her understand and prepare for unexpected, unfamiliar, or overwhelming situations.

Coping with sensory overload and changes in routine can be exhausting and stressful for individuals with ASD. Try to pay attention to “warning” signs that your child is feeling tired, anxious, or frustrated and use this opportunity to help him or her learn to ask for a break through the use of visual and verbal prompts, redirection, or calming strategies. Ask your child’s teacher what type of behavior management system is used in the classroom and try to use that familiar system or a modified version in other settings. The Autism Society of North Carolina Bookstore has some great books and videos about using visual supports to help your child recognize and manage his or her feelings and behavior. The Incredible 5 Point Scale is one of my personal favorites.

Learn to recognize when your child has had enough. All of the tricks in the book probably won’t help once your child reaches the dreaded point of no return – parents, you know what I’m talking about.

Happy Holidays!

Contact one of ASNC’s Autism Resource Specialists for additional information and resources. Vickie Dieter can be reached at vdieter@autismsociety-nc.org or 828-256-1566.