Focus on Sensory Processing Strategies at Annual Conference

 

King-Thomas

The Autism Society of North Carolina held its annual conference March 24-25 in Charlotte. We will be sharing information from conference presentations in upcoming blog posts.

Linda King-Thomas, a co-founder of Developmental Therapy Associates in Durham, presented on “Sensory Processing Issues and Practical Strategies” on the second day of the conference. Sensory integration is the neurological process that organizes sensation from one’s own body and from the environment and makes it possible to use the body effectively within the environment.

In addition to the sensory systems with which we are all familiar (touch, hearing, sight, smell, and taste), we also have vestibular, which relates to movement and gravity, and proprioceptive, which is about “heavy work,” or input to our muscles and joints.

Everyone has differences in their sensory processing, Ms. King-Thomas said. About 5-10 percent of people have sensory processing issues, and it is much more common among boys. A lot of children with autism have a narrow band of sensory input that they can handle, she said; receiving too much input or too little can be a challenge.

Sensory processing disorder has three categories, and an individual can be diagnosed with more than one:

  • Sensory modulation disorder: difficulty regulating the intensity of response to sensory input
  • Sensory discrimination disorder: difficulty interpreting the temporal and spatial characteristics of sensory stimuli
  • Sensory-based motor disorder – dyspraxia: difficulty conceiving, planning, and executing a novel motor action

Sensory modulation disorder

Ms. King-Thomas then focused on sensory modulation disorder, describing three ways that individuals can react to sensory input: over-responsivity, under-responsivity, and sensory-seeking. To help parents understand which category their children might be displaying, Ms. King-Thomas provided some examples for each.

Sensory over-responsivity behaviors:

  • Covers ears with loud noises
  • Sensitive to bright lights
  • Fears movement or changes in position
  • Avoids touching certain textures (grass, sand, finger-paints, squishy)
  • Does not like to get messy
  • Has strong clothing preferences
  • Does not like to be touched unexpectedly (They are willing to touch others, but it must be their idea, so they know it is coming.)
  • Has a poor tolerance to grooming (We have lots of receptors on hands, feet, and where our hair is. If you are trying to get them accustomed to touch, start therapy elsewhere.)
  • Often irritable, aggressive, impulsive, and moody
  • Has a poor tolerance to transitions
  • Frequently cries and is hard to console
  • Does not like to be held or cuddled
  • Needs help to fall asleep and stay asleep
  • Exhibits extreme separation anxiety
  • Has difficulty with transitions to new foods

Sensory under-responsivity behaviors

  • Has delayed reaction time
  • Is slow to respond to name
  • Seems unaware of environment, wanders
  • Has a high pain tolerance
  • Does not sense when diaper is wet
  • Does not feel clothing twisted on body
  • Does not feel food on face or dirt on hands
  • Does not seem to notice when touched
  • Has flat affect much of the time
  • Is hard to engage, may observe but not participate
  • Is unaware of body sensations (temperature, hunger)
  • Does not seem to notice noxious odors
  • Appears slow, unmotivated, or withdrawn

Sensory-seeking behaviors

  • Has a high activity level, seldom sits still
  • Touches everything
  • Hangs on people
  • Smells or mouths everything
  • Takes excessive risks that compromise personal safety
  • Prefers foods with strong flavors
  • Seeks loud noise
  • Likes to watch bright or spinning objects
  • Is excessively affectionate
  • May be demanding or hard to calm
  • Is a risk taker
  • Intrudes on others
  • May be kicked out of child care or expelled from school

To make things even more complicated, Ms. King-Thomas said, one person can have all three of these because each sensory system may be under- or over-reactive, independent of the other sensory systems.

These issues can affect an individual’s play skills, self-care and feeding, school-related activities, and social participation. If we can understand how behavior is affected, we can help children by modifying their environment, she said. For example, a child who is averse to unexpected touch could be allowed always to line up at the end of the line in school so that no one bumps into him unexpectedly.

Sensory processing strategies

Individuals with sensory processing issues can be treated with therapy using a sensory integrative approach. But Ms. King Thomas said families also can work on these issues at home, focusing on the sensory diet.

Your sensory diet is your daily intake of sensory and motor experiences needed to adaptively interact with the environment. Sensory and motor experiences help maintain optimal arousal and attention for learning. Once an individual is assessed by professionals to determine how much input they need, a plan is made to provide it throughout the day. Intensity, frequency, duration, and rhythm of input are all figured into the formula.

The goal is to keep the individual in the band of optimal arousal, so that will determine whether an alerting or calming input is used. For example, light touch is alerting, and deep pressure is calming; more sensation is not always better. The individual should be closely monitored to see how they respond.

Ms. King-Thomas mentioned some activities and items that could be used or done at home.

  • Movement: unstable surfaces such as a therapy ball, calisthenics, jumping, swinging, bouncing, dancing
  • Heavy work: carrying heavy objects such as a weighted backpack, digging in a garden, working out with weights, pushing a grocery cart
  • Deep pressure touch: weighted vest or blanket (make your own with rice), massage, tight exercise clothing worn under clothes
  • Oral motor: sucking through a long straw or using a thicker liquid, blowing bubbles or on a whistle, chewing gum
  • Womb spaces: small, dark, quiet spaces such as a cupboard; closet with pillows; tent; claw bathtub with pillows
  • Tactile: cheap toys such as squishy balls, silly putty, and bendable figures; phone cord; kneading bread; sand play. (These all help to take the place of moving the entire body)

Ms. King-Thomas also had some strategies to share, depending on the input your child may need:

  • Note preferences in clothing, temperature, and bed linens
  • Use music, white-noise machines, and sound-canceling headphones
  • Adapt walls with either bright or muted colors
  • Use natural light and avoid fluorescent light

Ms. King-Thomas, MHS, OTR/L, C/NDT, has worked in a variety of pediatric and developmental disabilities settings and has presented numerous lectures on sensory integration, fine motor, and feeding, including speaking to the counselors at ASNC’s Camp Royall for over 20 years.

For more resources, see the sensory category in the ASNC Bookstore.

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Focus on Strategies for Anxiety at Annual Conference

 

Holly Moses.jpg

The Autism Society of North Carolina held its annual conference March 24-25 in Charlotte. We will be sharing information from conference presentations in upcoming blog posts.

Holly Blanc Moses, a Board Certified Behavior Analyst, Licensed Professional Counselor, and Licensed Psychological Associate, gave a presentation titled “Autism and Anxiety: Strategies that Work” on the second day of the conference. Ms. Moses began by reminding her audience that everyone experiences anxiety at some point in their lives and listed several indicators: rigidity, oppositional behavior, unresponsiveness to reason, excessive emotional reaction, resistance to transition, excessive avoidance of harmless events/objects, excessive need to control others or the environment, confusion, frustration, and frequent question-asking. Anxiety can even manifest in physical symptoms including shortness of breath, rapid heart rate, muscle tension, headaches, and stomach pain.

It is estimated that up to 40 percent of individuals with autism may have a co-diagnosis of anxiety that can worsen their social challenges, increase their challenging behaviors, and generally reduce the scope of the world in which the person with autism interacts. Individuals with autism will usually have difficulty communicating their anxiety. As a result, their caregivers will often misinterpret their anxiety as bad behavior, applying labels such as “defiance” or “aggression.” Attempts to discipline the “bad behavior” will likely lead to one of three unproductive responses: avoidance or escape, fighting back, or shutting down.

The triggers for anxiety in individuals with autism are what Ms. Moses labels “heavy stuff”: expectations to tolerate difficult moments, to be social, to do homework, to please teachers and parents, to maintain self-care and complete chores; as well as unexpected changes. A patient of hers described his reaction to the heavy stuff as “I feel like I’m on fire,” and another noted “People like us don’t know how we fit in this world.” The focus of her therapy when working with these individuals is to find ways to lighten the load of the heavy stuff.

Ms. Moses explained that she tries not to minimize what her patients say; she dislikes common counselor questions such as “Is that a big problem or a little problem?” since it all feels “heavy” to these patients. She gave her audience a brief quiz by tossing out simple words and having the audience quickly respond “good” or “bad” to label each word; most found it very easy to identify words such as “happy” as being “good” versus “sad” which is “bad.” But Ms. Moses explained that her patients with autism and anxiety may struggle to apply such simple labels. She tries to work on their terms by keeping two small balls nearby; one is lightweight, soft, and fuzzy; the other is heavy, hard, and wooden. Patients can select a ball to respond to a word she gives by indicating how that word makes them feel, rather than by giving it a good or bad label.

Ms. Moses likes to use the phrase “My brain is telling me a story that…” and encourage patients to finish the sentence. Often the patient chooses a heavy or “stuck” thought such as “everyone hates me” or “I don’t do anything right” or “I stay in my room so I don’t have to monitor so many people” (these are actual responses gleaned from young patients, male and female). Ms. Moses then works to help the patient lighten the load of these heavy thoughts and getting them “unstuck” by helping the patient to interpret their brain story in a more positive way.

Ms. Moses then outlined two cases, beginning with Jack, a 10-year-old with ASD and anxiety who had an intense fear of mascots. Ironically, he loved the concept of mascots and had memorized the mascots associated with major league teams around the country and even talked about becoming one. But his fear meant that his family avoided fun outings such as ball games and had had to constantly surveil stores and restaurants for mascots before taking Jack inside. Jack also avoided social interaction with his peers and a schoolwide reward program. Her plan for Jack was based on social-skills training in session and during lunch and recess at school, systematic exposure to mascots (she emphasized that this type of exposure must be directed by a professional), and a system of rewards (reinforced at home) for school participation. The social-skills training involved four phases beginning with a group of a dozen or so students whom Jack pre-approved; no students knew that Jack was the target of the sessions. Conversation topics were also identified in advance, and students were encouraged to answer questions with short one- to two-word responses. In the second phase, Ms. Moses added some students that Jack didn’t pre-approve and encouraged full-sentence answers. In the third phase, the ratio of known to unknown students was about 50:50, and longer conversations were encouraged (three exchanges per question). Finally, the 50:50 ratio was maintained but the topics were pre-identified only for the first two exchanges; students were instructed to both ask questions and make comments. She tracked Jack’s contribution to each session, which rose from 3% to 70%. Best of all, when the sessions ended, Jack hugged a mascot and attended a sports event with his family that included a mascot.

Dave was a 13-year-old with ASD and anxiety; he dealt with his anxiety by running from the room and had engaged in self-injurious behavior severe enough to lead to multiple hospitalizations. He also had not-so-cool ways to try to engage his peers, such as breaking into a rap song in the middle of class. Ms. Moses’ plan for Dave included trying to make room for what he called his “brain trains” (the “heavy stuff”) by understanding that they will arrive whether we want them or not, and encouraging him to jot down his brain trains to discuss in sessions. She also developed a school behavior plan to include a signal to the teacher requesting a break in the hallway for up to five minutes and two to three daily check-ins with the school counselor. Ms. Moses worked to further educate both the teacher and Dave’s parents about autism; this included training his mother to give more effective instructions, especially for transitions. And finally, Ms. Moses added social-skills training, which encouraged Dave to engage with students with similar interests and helped him learn to be more effective at giving compliments. Over time, Dave made friends, acquired his first girlfriend, and engaged in school activities including Math Olympics, bowling team, football team manager, and theater.

Ms. Moses concluded her presentation with some quick tips, beginning with “Make Time Visual.” Time can be very hard for those with autism to conceptualize leading to complaints such as “This is gonna take forever!” or “Whatta you mean it’s time to quit?” Keep a colorful timer nearby. Another tip is “Make Life Visual” with pictorial (or text as the child ages) schedules, homework goals, reward systems, etc. Praise successes, especially if you notice more calmness with your child in challenging situations. Gradually expose him/her to feared events or objects. Use clear one- or two-step instructions, and always be sure the goals you’ve set are genuinely reachable.

Holly Blanc Moses, MS, BCBA, LPC, LPA, of Crossvine Clinical Group, PLLC, in Raleigh, has more than 19 years of experience in working with individuals with autism and developing strategies to assist them.

Action Alert: Ask Representatives to Stop Medicaid Cuts

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Action Alert: Proposed Changes to Medicaid Will Cut Funding

Call Your Representatives Today!

 

Congress is moving quickly to repeal the Affordable Care Act (ACA or Obamacare) and replace it with the American Health Care Act, or AHCA. This bill will make drastic cuts to the Medicaid program affecting people with autism who are currently getting Medicaid, including those on Innovations home and community based waiver, those on the waiting list, and those who may need these services in the future.

The health-care bill is being debated now. The House of Representatives is moving quickly to push for a vote by the end of March. The Senate is planning to vote on the House bill before the mid-April recess.

We urgently need you to call your senators and representatives today and explain why the ACA and Medicaid are essential to people with disabilities and their families. People’s health, services, and lives are at stake.

Message: Do not cut and cap Medicaid. As it is currently written, the AHCA will cut an estimated $800 billion from Medicaid over the next 10 years.

  • Already lengthy waiting lists for disability waiver services will grow to record levels, and services may be severely limited. General Assembly legislators are moving to reduce NC waiting lists; these changes at the federal level could stop this from happening
  • If funds become scarcer, states may decide to stop providing personal care, mental health, prescription drugs, and rehabilitative services.
  • People with disabilities who require Medicaid services to live in their own homes, hold jobs, and participate in communities may be without those supports. Costs could shift to individuals or family members.
  • Coverage for intensive behavior services (including ABA) for children under Medicaid’s EPSDT could end.
  • Schools may no longer be reimbursed for services. This would only increase the burden on schools.
  • For additional information, see the Medicaid fact sheet developed by the Consortium for Citizens with Disabilities.

Take 5 minutes to call your representatives now!

Let them know:

  • I am your constituent.
  • I am a person with a disability, or I am a family member of someone with a disability, or I am a professional in the disability field.
  • I care deeply about health care, including Medicaid.
  • Briefly share your personal story; that is what will make a difference.
  • North Carolina is already using per-capita funding models and has 8-year waiting lists for many autism services.
  • Do not allow per-capita caps and cuts to Medicaid to be part of an ACA replacement.

Call now:

Sen. Richard Burr 202-224-3154

Sen. Thom Tillis 202-224-6342

NC congressional delegation (find which US House member represents you here):

  • 1st District: George “G.K.” Butterfield Jr. 202-225-3101
  • 2nd District: George Holding 202-225-3032
  • 3rd District: Walter Jones Jr. 202-225-3415
  • 4th District: David Price 202-225-1784
  • 5th District: Virginia Foxx 202-225-2071
  • 6th District: Mark Walker 202-225-3065
  • 7th District: David Rouzer 202-225-2731
  • 8th District: Richard Hudson 202-225-3715
  • 9th District: Robert Pittenger 202-225-1976
  • 10th District: Patrick McHenry 202-225-2576
  • 11th District: Mark Meadows 202-225-6401
  • 12th District: Alma Adams 202-225-1510
  • 13th District: Tedd Budd 202-225-4531

 

To learn more about how to advocate with your legislators, see our website.

Every call you make counts! Literally. Staff and representatives are noting the issues and counting calls.

Thank you for taking action and making calls today!

 

How to Help as a Grandparent

Terry and grandson

This article was contributed by Terry Fetzer, who is an Autism Resource Specialist in the Eastern region and has a son and a grandson with autism.

Most of us remember what a miracle it was when we became a parent of a child. The years pass, and now your child is an adult having a child, and the memories flood back. As an excited grandparent, you celebrate the birth of your grandchild with the parents. As the child grows, differences begin to show up in the development of communication, joint attention, playing with objects, and responding to others. The usual milestones are not being met, and the parents seek help. After evaluations, your grandchild receives a diagnosis: Autism Spectrum Disorder. You’re faced with the reality that your precious grandchild has special needs. The emotional rollercoaster begins to takes over. You go through a grieving period as you begin to process how this will affect the lives of your child and their spouse. The love you feel is strong, and they will need you now more than ever. Your heart aches, wondering how they will manage; you know how much time and energy it has taken over the years to raise your own children. The challenge as a grandparent of a child on the autism spectrum begins to sink in. What does this really mean? You are afraid that you will not be able to keep up with the demands that will come up day after day. You take a deep breath! You decide you will have the courage to continue, one day at a time. With strength and support from each other, your family begins the journey.

You can help your child

Love your child and try to listen before talking. Be kind and allow your son or daughter to ask for help instead of jumping in and trying to fix things in a way you think is best. This is their child, and as adults, they need your love, support, and guidance, not your control over their lives. Respect their decisions even you would do something different.

Understand that it will take some time to establish a routine that will work for the family. Try to use the strategies and schedules that they have worked on to maintain consistency. It is OK to share suggestions and let them know if you do not understand something, but please try first to follow their lead. They will be tired, and you being on board with their routine will help with transitions and their anxiety. This helps the whole family.

Be helpful and let them know when you are available to go to the store, fix a meal, care for the other children, and help around the house. Even taking the kids for an hour or so can provide a break they will appreciate very much.

Keep encouraging them and let them know that you are cheering them on. Use praise to lift them up. Be positive look for the progress they are making each day.

What I have learned over the years

Educate yourself by finding out about the disability. Ask your children to share resources they have found. Find local resources and share the information with your children. Share articles and news you have heard to show you are actively wanting to understand your grandchild.

If possible and okay with the parents, it is helpful to accompany your grandchildren to meetings, doctor visits, therapy sessions, etc., so you can talk about how things are going and ask questions if you do not understand. The more you learn, the better support you can be for the family.

Take care of yourself and balance your time with your husband and your extended family. Share your love and attention with all of your grandchildren. Try not to favor or ignore the one with the disability. Love them all as equally as you can. Every family member is a vital part of the support system for the family. You need each other.

Try to connect with support groups and other people in your community who have grandchildren with a disability. Spend some time together to share experiences. It is comforting to know you are not alone on the journey with your children and grandchildren. You also can learn from each other and be a positive support during the good and difficult times.

How to support your grandchild

Love your grandchild as a person first, no matter what. Accept them for who they are. Meet them where they are. Learn what they like and play with them. Enjoy what time you have together.

When they get upset, try to redirect them. Keep language clear, concise, and to a minimum. Give them time to calm down and get themselves together as much as possible. Don’t take personally anything that is said in an explosive moment. Always see this as a symptom, not who they really are as a person.

Help them learn to trust you and feel you are always a safe person to whom they can turn whenever they need help. Give them support and help in a way that is loving, kind, and consistent.

Remember, our grandchildren are unique individuals. They need and deserve the best life possible. Be a positive influence and let them know your love grows with them each and every day.

Terry Fetzer can be reached at tfetzer@autismsociety-nc.org or 252-670-5275.

ASNC Day on the Hill

 

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

The Autism Society of North Carolina traveled to Washington, D.C., to participate in the Autism Society of America’s annual Day on the Hill for Autism Society advocates. Our goal in participating this year was to make sure that we voiced to Congress the critical need for services and supports for people of all ages on the autism spectrum, as legislators consider affordable health care access, Medicaid funding, and education issues.

ASNC Director of Policy Jennifer Mahan met with staff from our congressional delegation on Capitol Hill February 16 to discuss our concerns about affordable, comprehensive health care; Medicaid’s importance to people with disabling conditions; the need for adult services including employment supports and housing; and the right to a free appropriate education that meets the needs of students with disabilities.

Many of our current members of Congress are aware of autism issues, as well as the work of ASNC, based on their connections to constituents, families and ASNC’s long history of service in NC. Despite this familiarity, with so many changes happening on a national level it is more important than ever for all of us to make the connection between the policy decisions faced by our members of Congress and the impact of those decisions on the lives of people with autism and their families.

 

What You Can Do

  1. Learn who represents you and North Carolina in Congress.
    • You are represented by two US senators, Richard Burr and Thom Tillis.
    • You are represented by one member of the US House of Representatives, based on where you live. You can find out which US House member represents you by entering your street address on the THIRD map at the bottom of this page. (Please note that only the third map on this page is for Congress. The other maps are for the NC General Assembly.) Or you can call the Congressional Switchboard at 202-224-312 for info on your members of Congress.
  2. Tell your representatives about your experiences with autism, as a person on the spectrum, as a family member, as a professional, as someone who cares:
    • Call or email. Handwritten letters take weeks or months to reach Congress because of security measures. Calling or emailing is better. Better still is inviting your member of Congress to a local autism event or local service organization to see things firsthand.
    • Say you live in their district. (OR for your two senators, say that you live in NC).
    • Tell them the basics: who you are, how autism has affected you, why the issue is important, and why retaining or getting access to health care and education services has helped. Keep it to the equivalent of a page or a five-minute conversation. Short summaries are more likely to generate questions and interest in your issue.
    • Be respectful and positive, but firm. Ask for what you need. Some talking points are below. See our toolkit Advocacy 101 for more on working with elected officials.

 

Talking Points to Advocate on Issues that Matter

We know that health and disability issues can be complex. Below are some points that you can use in your discussions with Congress. MOST IMPORTANT is telling your story about autism and what is working or what could be improved with the help of your member of Congress. You don’t need to be a policy expert!

  1. The Affordable Care Act/“Obamacare”
    • The ACA should not be repealed without a plan for replacement that maintains or improves access to health care.
    • People with autism have benefited from parts of the ACA that require coverage for pre-existing conditions, the ability to stay on families’ health-care insurance until the age of 26, and the ability to buy affordable coverage on the health marketplace.
    • Autism is a complex disorder that often includes other physical and neurological conditions.
    • Any health-care package must include both rehabilitative AND habilitative services, mental health and addiction services coverage, behavior treatment, and prescription drug coverage.
    • Because of changes in the ACA, North Carolina has dramatically improved access to children’s health care, which improves access to developmental screening, early identification of autism, and early interventions.
    • Health care must be affordable and address high cost-sharing requirements and high premiums. Many families already struggle with added costs of raising a child with special health needs. Many adults on the spectrum are unemployed or under-employed, so age cannot be the only factor in determining health-care subsidies.
  2. Medicaid
    • Medicaid provides health-care services, long-term care services, and other supports that maintain health, functioning independence, safety and well-being to an estimated 500,000 children and adults with disabilities in North Carolina.
    • State Medicaid programs provide critical screening, early intervention, and home-based health programs for children with autism under Early and Periodic Screening, Diagnostic and Treatment (EPSDT). Early screening, diagnosis, and intervention are critical to preventing long-term disability.
    • NC is already doing a good job with its federal Medicaid funds: NC has used managed-care principles, prevention services, and health data to effectively manage Medicaid costs.
    • Do not cut Medicaid funding. Program cuts, along with block granting or per capita caps would hurt people with autism who rely on Medicaid for essential services. These costs get passed along to beneficiaries, families, and providers who are already doing more with less.
    • Additional cuts or restrictions on Medicaid funding could prevent NC from addressing the 12,000 people with developmental disabilities, including autism, on NC’s Medicaid waiver waiting list.
  3. Education
    • The Individuals with Disabilities Act (IDEA) and the Every Student Succeeds Act (ESSA) ensure that students with disabilities get the education they need and that schools are subject to a strong accountability system to ensure all students succeed.
    • IDEA is parent-driven: parents ask for evaluations, participate in planning, and can access procedural protections to ensure that their child is able to learn.
    • The federal IDEA act is not perfect, but it is assuring families that their child is able to attend school and get access to the curriculum in the least restrictive environment. It is CRITICALLY important to assure these rights for students with disabilities.
    • Schools are already challenged to meet the needs of students with disabilities: right now only about 15% of the funding for educating special needs students comes from the federal government though much more was promised. Please fully fund special education.

 

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

 

 

 

Raleigh Student Gives Time to Help Others

vibhu-check

At just 12 years old, Vibhu Kumar Subramani is a successful and innovative fundraiser for the Autism Society of North Carolina. Vibhu, who attends Carnage Middle School in Raleigh, raises money by collecting and recycling used cooking oil with the company Key Energy, based in Pittsboro.

The seed for Vibhu’s project was planted when he was even younger. In 2010, when he was vacationing at Disney World with his family, he saw a person with autism and wanted to understand more about her. “My parents told me that I could help if my empathy could be turned into contributing my share toward her benefit,” Vibhu said.

vibhu-oilIn a little more than a year, Vibhu has raised more than $300 to benefit individuals and families affected by autism. He spends a couple of hours each month distributing brochures and collecting used oil from households. Key Energy then picks up the oil from his house. The company also collects oil directly from restaurants that have signed a contract with Vibhu. He is then paid for the oil that is collected and donates that money to ASNC.

Helping ASNC is the right thing to do, Vibhu says, and this particular project also benefits the environment by properly disposing of waste oil. In his letter to prospective clients, Vibhu tells them “we can turn the waste cooking oil into bio-diesel and eliminate some CO2 from our atmosphere.”

“We are so impressed with Vibhu, who at such a young age has channeled his passion for the environment into helping individuals with autism,” said Kristy White, ASNC Chief Development Officer. “He clearly is going to be a strong leader in the future, and this experience will help him toward his goals.”

Vibhu says he plans to keep up his fundraiser until he goes to college, “donating to help the people who need help most.” He also spends some of his free time volunteering with children with autism.

Vibhu aspires to be a doctor someday, and his compassion for others and his work ethic will surely carry him far.

 

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.