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

grinch3

“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.

grinch-2

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.

Surviving the Season: Tips to Help You Enjoy the Holidays

family-opening-christmas-gifts

This article was contributed by Wanda Curley, an Autism Resource Specialist in the Triad and mom to a son with autism.

The holidays are anticipated by many, yet when the temperatures cool and bells start jingling, we will all be likely to hear people around us talking about the added stress and strain they can bring to families as well. This can be doubly true for families with a loved one on the spectrum, who must then deal with the added stress of additional changes and transitions, crowds, disrupted or broken routines, and overwhelming noise and lights.

The main key to avoid frustration and help your loved one on the spectrum enjoy (or at least survive) the season is found in one word: PREPARATION! So, how do we prepare?

Know and assess

One of the first things we as parents must do is simply to know our child well and to assess the amount of holiday cheer that he or she can truly tolerate. Can your child tolerate the additional crowds at the local mall from late November through December? If not, then consider avoiding those days and make a plan to let them shop earlier in the year or at times during the season when stores are less crowded. Can your child handle seeing big changes in your home such as the sudden addition of the lights, Christmas tree, etc.? If not, then consider scaling back your decorations or adding them very gradually over a few weeks. This can also be a good way to involve your child in the process and allow him to take ownership of some customs and activities that he can enjoy. The more control that your loved one has over the extra activity of the season, the more tolerant and accepting of the changes they are apt to be. Make sure you give ample choices of holiday activities, including some calming, non-holiday options that are familiar and typical for them in their daily routines.

Plan ahead

Have a holiday season calendar prepared for your loved one in addition to their typical visual support systems. Mark the dates of the various holiday events, such as special concerts or dinner with extended family. Create a social story for the various events so that your child will know what to expect way ahead of time. You may even want to prepare a photo album with pictures of family and other guests who may be visiting your home, or of whom you may be traveling to visit during the holidays. Schedule looking at the photo album as a leisure activity on your child’s schedule, and that way your child will feel more familiar with people they don’t see as often during the year. Role playing and scripting of typical family situations during the holidays may go a long way toward relieving the added anxiety your loved one may feel during the season.

Provide an escape

Have a calming space set aside for your child that he or she can access whenever the hustle and bustle of the holidays gets to be too much. Teach your child self-management by using a break card or developing some type of cue for them to show when they are anxious and need some space to themselves. If you’re visiting in someone else’s home, this may be just a quiet room away from everyone where the lights can be turned down, soft music played, etc.

Duplicate favorite items

If you are traveling for the holidays, make sure that you have plenty of your child’s “favorites” on hand, including snacks, books, toys, sensory items, etc. You can also help by letting extended family or friends know about some of these items so they have them available as well. Many times, our family members and friends feel just as helpless as we do in difficult situations, so they will be happy that you have not only educated them on your child’s needs but also allowed them to be part of the solution. If you must travel by plane, use social stories and visual supports to make sure your child is prepared for any delays, as well as what will actually occur during the boarding and flying process.

Be flexible and “let go” when needed

Many of us have happy memories of past holidays and thus make expectations for the season that can be hard to meet provided the difficulties our loved ones may endure during this busy time. Perhaps you have always traveled instead of staying at home, or had a custom of exchanging and opening all gifts on Christmas Eve or Christmas morning. Don’t be afraid to “change things up” if you need to do so to make it easier on your child and your entire family. Perhaps you need to start a custom of opening just one gift per day to help prevent your loved one from being overwhelmed. In our family’s case, our son with autism has never truly enjoyed the unwrapping of gifts, so we started a custom of making him a nice big gift bag with all of his gifts together. He can pull them all at the same time, or he can take his time and pull out one at a time without having to unwrap anything. He much prefers this process, and we have seen him become much less anxious now as a result of this one change we made for him.

Does your child not enjoy the concerts or other crowded events of the season? Opt for unconventional or quieter activities that can be enjoyed by just your family. One of our newest traditions is to enjoy a light show together by car. Just a handful of us are in the car, and we can adjust the sound as well as bring along some of our favorite holiday treats to share. Don’t feel guilty about having to let go of some time-honored traditions or customs. Make new ones that are more comfortable for your family, and don’t stress about those things that are difficult to access now. Our children on the spectrum can often sense our anxiety and frustration, which may then lead to their own, so it’s important to find time to take a breath and “de-stress” ourselves as well.

The holidays truly are a wonderful time of year, so don’t hesitate to begin new traditions and customs as needed. Think “outside the box” and finally … try to RELAX AND ENJOY!

Wanda Curley can be reached at 336-333-0197, ext. 1412, or wcurley@autismsociety-nc.org.

 

To Learn More

 

The ASNC Bookstore has some recommended resources for you:

Boy and a Bear: The Children’s Relaxation Book by Lori Lite

Why Does Izzy Cover Her Ears? Dealing With Sensory Overload by Jennifer Veenendall

Picture This: Places You Go/Things You Do, a CD Rom with pictures of modes of travel to add to visual schedules

Books to help friends and relatives understand autism:

Can I Tell You about Autism? by Jude Welton

Grandparent’s Guide to ASD by Nancy Mucklow

A Friend’s and Relative’s Guide to Supporting Family with Autism by Ann Palmer

Managing Frustration and Anxiety

 

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Dr. Jed Baker, noted autism expert and author, shared some of his expertise with parents and professionals last week at a one-day conference in Raleigh. His presentation was titled “Managing Frustration and Anxiety and Teaching Social Skills” and provided strategies for individuals with Autism Spectrum Disorder, ADHD, anxiety, mood disorders, and learning challenges.

For those who could not attend, we are sharing highlights of the portion of Dr. Baker’s presentation on managing frustration and anxiety. You can also learn more with his award-winning books, available in the ASNC Bookstore at www.autismbookstore.com.

Keep Your Cool

Dr. Baker’s first tip was that caregivers must learn to control their own emotions. “If you can be cool, you can get someone else cool,” he said. Reacting to someone having a meltdown by either giving them what they want or forcing their compliance is not effective, he said. Giving in doesn’t last; it feels good in the moment but has disastrous long-term consequences. Getting angry comes from not feeling respected. Caregivers can use fear and unpredictability to scare individuals into complying, but in the long run, the individuals don’t trust you anymore, they don’t want to be in your home or class, and they will not like you, he said.

“90 percent of teaching and parenting is tolerance,” Dr. Baker said. Caregivers must tolerate their own discomfort long enough to think about what to do and not give in or get angry.

So how do caregivers control their own emotions? Number one, by having hope! Tthink of challenges as a temporary issue that can be fixed, not a character flaw. Know that things will get better eventually as long as you stick to strategies. Studies have shown that parents who are optimistic stick to strategies and therefore bad behaviors lessen over time.

Two other things to keep in mind when attempting to control your own reactions: Realize that the individual’s behavior is not intended to challenge your authority but is rather a reflection of their lack of coping skills. Also, do not worry about what other people think. Most observers understand that a child having a meltdown in public is not a reflection of your competence, and they do not blame you. You can gain respect by controlling yourself, not the child.

Lastly, be sure to take care of yourself and maintain balance in your life. What are you doing to make yourself happy? Dr. Baker suggested trying yoga, meditation, and exercise as great ways to reduce your own stress and enable yourself to maintain control of your emotions in the face of meltdowns.

Build a Positive Relationship

The first step to managing an individual’s behavior is to build a positive relationship, Dr. Baker said. It is very important for children to know that adults around them actually do care about them; show warmth and caring.

Ensure that the individuals know what is expected of them by using structure, visual supports, and differentiated instruction. Fair is giving everyone what they need, not teaching everyone at the same level, Dr. Baker explained.

You can also build confidence through the 80/20 rule. Enable individuals to succeed by starting with tasks or lessons they already grasp, then move on to new or more difficult material for the last 20 percent. If you start with the difficult material, they will feel defeated, Dr. Baker said. If you don’t let them make a mistake or fail the first eight times, they will believe they can succeed.

And finally, avoid power struggles. For example on homework, allowing breaks or limiting the amount of time they spend on it is not giving in, it is managing the work. You could also try doing the work with them or doing the first problem for them.

Manage Crises

When an argument, meltdown, or crisis does come up, first be willing to take some time to manage it. Listen to their side of the situation, agree, and apologize when necessary. Show some sympathy; there is always a kernel of truth in why they are acting out. Then collaborate and ask them “what do you want? Let’s find the right way to get that.”

If the individual is too distraught to use logic or reason, try to distract them and change their mood or focus with novel items, special interests, or sensory activities. Dr. Baker said that when he is working with individuals on the spectrum, he always keeps his pockets full of things he can use to distract them. Distraction is not rewarding the behavior as long as you don’t give them what they were having a tantrum over. If the individual is trying to avoid a task, distraction helps them avoid it, so give them a legitimate way such as taking a short break or breaking the task into pieces.

Once the crisis is over, make a plan for next time.

Work on Repeat Behavior Problems

If the individual is repeating unwanted behavior, explore why it happens. Observe and keep a journal so that you know what happened before, during, and after the behavior. The difficulty is that causes for the behavior come before the behavior, when you might not be paying attention. But with practice and time, you should be able to discover the trigger for the behavior.

Some of the typical triggers Dr. Baker listed were:

  1. Internal issues – hunger, exhaustion, illness
  2. Sensory issues – noise light, touch, overstimulation, boredom
  3. Lack of structure – not enough visual supports to give expectations
  4. Challenging or new work, feared situations
  5. Having to wait, not getting what one wants, disappointments
  6. Threats to self-esteem such as losing, mistakes, criticism
  7. Unmet wishes for attention – being ignored, wanting others to laugh

Once you have data on the trigger(s), you can develop a prevention plan. Dr. Baker mentioned his No More Meltdowns app that will help caregivers keep track of behaviors. The app allows you to upload to www.symtrend.com/nmm, which will analyze data and give you a prevention plan.

A good behavior plan will change or remove the triggers as much as possible, teach the individual skills to deal with the triggers, and reward new skills. If the individual is not already frustrated, you can also use a loss system when they do not use new skills to deal with the triggers.

Demands for Work

When an individual is frustrated by demands for work, there are several ways you can change that trigger. First, model and prompt rather than test. This goes along with the 80/20 rule mentioned previously. “Teach” them something they already know first, so they succeed. You also can give them a choice of which work they do, or use their special interests to make the work more appealing. Visual supports, such as instructions, outlines, and labels are helpful for many individuals. Finally, try reducing the length of time and using a timer so they can see how long they must keep doing the task.

To help individuals deal with demands for work, teach “trying when it’s hard,” Dr. Baker said. For some individuals, the fear of the work is the trigger, and this can be overcome with gradual exposure. Get them to try a small portion of the work. Teach them to ask to watch first or to ask for help. Tell them that they may take a break for a certain amount of time and then come back to try again. Finally, be willing to negotiate how much they do (unless you know you are working with an individual who will keep negotiating, which Dr. Baker referred to as a “congenital attorney,” much to the audience’s amusement).

Dealing with Fear

Some individuals fear situations that can just be avoided, but many must face their fears because situations cannot be avoided. Start by persuading these individuals that they must deal with their fears. Talk about their strengths and their optimistic future, and then bring up that they should deal with their fears so that the challenge is not in their way anymore. It can be a relief for them to learn that they do not have to change fundamentally, they just have to make it so that the challenge does not stand in the way of their success, Dr. Baker explained.

Then explain anxiety and true vs. false alarms. Being anxious means that the brain lies to you and makes you afraid all the time, rather than just keeping you out of true danger, he said. Help them to think like a scientist and do research on their fears. For example, if they wash their hands constantly because they are afraid of germs, they should research the likelihood of contracting a disease. Let them convince themselves through logic that their anxiety is overblown.

You can also try gradual exposure to their fear. A visual aid of a fear ladder with rungs of exposure can allow for rewards as they reach each rung.

To reduce individuals’ overall anxiety, add exercise, mindfulness meditation, and relaxation techniques. Dr. Baker recommended the resource www.fragrantheart.com. Focusing on the moment means they are not worrying, and it recharges and re-energizes, he said. The best time for many is at night, because they are less occupied, and so that’s when all the worries come out.

Finally, if anxiety is debilitating and other methods are not working, Dr. Baker said neurofeedback and medication can be useful options.

Waiting, Accepting No, Stopping Fun

Dr. Baker offered several strategies for individuals who have meltdowns because they are unable to wait, accept no for an answer, or transition away from preferred activities. A visual timer can help them understand how long they will have to wait or when they must start a new activity. A visual schedule also helps with transitions. “Prime ahead” by discussing what they will gain by waiting or accepting no, and talk about disappointments that might occur during an upcoming period.

Help them accept no by providing what they want or something else that they want at a later time. Use a reward system such as a “disappointment poster” and give them points for waiting, accepting no, and stopping fun.

Self-esteem: Mistakes, Losing, Teasing

For individuals who are upset by losing or mistakes, again the 80/20 rule is useful, Dr. Baker said. Let individuals win or succeed 80 percent of the time to build up goodwill. You also can talk ahead of time about mistakes that might occur but remind them that mistakes help us learn and grow; if you are not making mistakes, you are not trying new things or learning.

For teasing, first protect the individual as much as possible by surrounding them with supportive peers. Peer buddy programs have been shown to be a very effective method of building children up and preventing teasing. When teasing does occur, help them to check it out first to make sure they understood correctly. Perhaps it was not meant to be teasing. Teach them that when they are teased, they should calmly ask the person to stop, showing that the teaser did not get to them and does not control them. If the person does not stop, they should report the behavior.

Unmet Needs for Attention

Some individuals act out to gain attention. To change this trigger, you can schedule attention or special time for the individual so they know they will get it. In the classroom, for example, you could use a timer to count down to when they may speak with the teacher rather than calling out in class. Dr. Baker also recommended looking for appropriate outlets for the individual, such as theater or standup comedy.

Also, teach the individual about positive ways to get attention, stressing that they want to be liked, not just gain attention. Teach them about public vs. private topics, and if in a classroom or other group setting, try to get peers in on it — if the peers laugh when the student says something inappropriate, that is a reinforcement of the negative behavior. Teach the individual the “rules of comedy”: Don’t make fun of vulnerable people. Use slapstick, random thoughts, and self-deprecation.

Sensory Needs

For individuals who engage in self-stimulation such as drumming, flapping, or chewing for sensory needs, you can try to change the triggers by avoiding boredom such as waits or group activities in which they are not engaged, or by modifying frustrating work.

Skills you can teach them include alternative ways and times to self-stimulate and how to be a self-advocate for a better environment, Dr. Baker said. Individuals need to know to ask for what they need, such as less noise or more interaction. On the other hand, they need to know they have a right to the environment that works for them but can’t impose it on everyone else. If they need it quieter, they can ask people nicely, and if they don’t get it, the individual should ask to leave and take a break.

Self-Calming

Dr. Baker also discussed ways to prepare for unexpected triggers. Collaborate with the individual on ways to distract and soothe themselves in the case of upsets. Have them compile a folder of relaxation techniques. Establish safe people whom they can turn to when they need support. Teach them this self-talk: “All problems can be solved if you can wait and talk to the right person.”

Jed Baker, Ph.D. is the director of the Social Skills Training Project, an organization serving individuals with autism and social communication problems. He is on the professional advisory board of Autism Today, ASPEN, ANSWER, YAI, the Kelberman Center and several other autism organizations. In addition, Dr. Baker writes, lectures, and provides training internationally on the topic of social skills training and managing challenging behaviors; he was the keynote speaker at ASNC’s 2015 annual conference.