Public Policy Update

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

 

Federal News

American Health Care Act (AHCA) Update

Thank you for calling your US House of Representatives member regarding cuts to Medicaid in the AHCA and the importance of health-care coverage for autism. Your direct advocacy matters! The US House was not able to get enough votes to support the proposed replacement for the Affordable Care Act (ACA). For now, the legislation has been shelved; however, Congress and the Trump administration continue to discuss new proposals around both an ACA replacement and Medicaid funding changes. The Autism Society of North Carolina will continue to monitor federal policy changes. We encourage you to read up on federal proposals; we will be posting occasional updates, alerts, and links to resources about health-care proposals. For more information, read the Kaiser Family Foundation policy analysis comparing AHCA, ACA, and other proposals.

Medicaid is a program that serves millions of people with disabilities and complex health conditions, including people on the autism spectrum. Medicaid Home and Community Based waivers, such as North Carolina’s Innovations and CAP programs, allow people with serious disabilities to live at home with families or in community settings. If you are not already aware of how Medicaid supports people, we urge you to begin reading up on program. ASNC will be posting occasional resources and links to learn more about Medicaid in NC and across the country.

 

Supreme Court Decision about Special Education

The Supreme Court sided with parents who removed their son from school because of an inadequate IEP. In the Court’s ruling, it said that the “appropriate” portion of the “free and appropriate education” guaranteed by IDEA, should be more than just ensuring that children make barely above minimum progress. This appears to indicate legal support for higher standards for IEPs and student advancement: that students with disabilities should be making “meaningful” progress in their education.

What is not clear from the ruling is how schools will help students achieve this progress when IDEA has never been fully funded at the federal level as was promised when the bill passed. Schools are under pressure to serve more special education students with limited resources and a shortage of special education teachers. The Autism Society continues to advocate and the state and federal levels for special-education funding and education programs that address the unique needs of students on the autism spectrum. To learn more, read the National Disability Rights Network statement on the ruling.

 

North Carolina and NC General Assembly News

NC ABLE Update

The NC Department of the State Treasurer has just announced that checking and debit options for NC ABLE accounts are now available. NC ABLE allows people to save money to pay for future or current expenses without losing eligibility for certain government benefit programs.

Signing up for NC ABLE accounts is quick and easy. For more information about how NC ABLE might benefit you or someone you know, see the FAQs.

State Budget

The governor has release his budget proposal outlining priorities for the new administration. The release of this budget also is the start of the legislative budget process for North Carolina. The sovernor’s budget proposal has a number of funding recommendations that could help those on the autism spectrum. Details are below, but include proposals to fund education support, adult guardianship, special assistance, early child development agencies, community-based MH/DD /SA services, complex children’s services, Medicaid services, and Innovations waiver slots.

The NC Senate will start the General Assembly budget process this year by introducing their version of the budget legislation. The General Assembly budget bills are not required to be based on the governor’s proposals. House and Senate leaders are said to be working closely on their proposals, and we expect to see details in the next few weeks.

ACTION: This is a great time to introduce yourself to your state senator and ask North Carolina’s General Assembly to fund much-needed services for autism.

1) If you don’t yet know which state senator represents you, check the second (middle) map on this webpage.

2) Click the link to connect with the district page and find the senator’s email or mailing address. Most are firstname.lastname@ncleg.net, and the address is listed above their email.

3) Write a short, friendly email or handwritten note:

  • Introduce yourself and mention you live and/or work in their district
  • Tell them how you are connected to autism (family, self-advocate, work with, etc.)
  • Ask them, politely, to fund one or more of the governor’s proposals and explain in a sentence or two how that will help someone with autism. For example: “We will be waiting for 7 or more years for services unless Innovations waiver slots are funded.”

This is just one example of what to write; use one that best fits your situation. For more help on advocating, see our tips or our Advocacy 101 toolkit. If you need help figuring out what to say in your email, please contact Jennifer Mahan, our Director of Advocacy and Public Policy, at jmahan@autismsociety-nc.org.

 

Governor’s Budget Proposal Details

Education

  • More School-Based Personnel to Improve Student Outcomes. Establishes a new allotment to be allocated to LEAs based on average daily membership (ADM). Provides $20 million from lottery receipts as flexible funding for LEAs to hire additional school-based personnel who will have a direct impact on improving student outcomes, including assistant principals, nurses, behavioral support staff, teaching assistants, and other instructional support personnel.

Health and Human Services

  • Adult Protective Services/Guardianship. Provides$4.6 million for 2017-18 and 2018-19. Improves the safety of adults who are elderly or disabled and who are subject to abuse, neglect, and exploitation. County Departments of Social Services receive thousands of reports annually and must evaluate and, when needed, provide adult protective services (APS). Additional funding will provide aid to counties to hire social workers needed to reduce APS caseloads and thereby increase quality of service. In addition, there is an increasing need for public legal guardians, who are required when an adult is deemed by the courts to be incapable/incompetent. Funds are provided to increase capacity to provide guardians through local entities.
  • State County Special Assistance. Provides a cash supplement to help low-income, elderly, or disabled individuals remain in their homes or live in licensed adult care homes through the State County Special Assistance program. This program is shared at a 50% participation rate between the state and county. Increased funding is needed to ensure this living assistance benefit is available based upon anticipated enrollment and payments.
  • Invests in Children’s Development Services Agencies. Supports children and families by investing in the Children’s Developmental Services Agencies (CDSA). The 16 regional CDSAs, which serve children who have developmental disabilities and are ages 0-3, require additional staff to comply with federal mandates. Current staff maintain high caseloads that impede their ability to complete evaluations and assessments and initiate services within the required timelines. The request would fund clinical personnel and service coordinators. ($2,541,482R FY17-18 $6,397,430R FY 18-19)

MH/DD/SAS

  • Targeted Reinvestment of Community Services Funding. The base budget increases community services funding by $152.8 million on a recurring basis. Of these funds, $105.8 million in FY 2017-18 and $83.4 million in FY 2018-19 will be allocated to the Local Management Entities/Managed Care Organizations (LEM/MCOs) to meet the service needs of their catchment areas. The remaining balances, $47.0 million in FY 2017-18 and $69.4 million in FY 2018-19, will remain in the community service system, but targeted re-investments to address emerging service needs including those for dually diagnosed children (I/DD and MI), and local in-patient bed capacity. Other targeted investments include support for Innovation waiver slots and housing and supported employment pursuant to the settlement with the US Department of Justice.
  • Disability Rights of North Carolina Settlement – Specialty Treatment and Assessments.

Funds the department’s settlement agreement with Disability Rights NC. The agreement will build system capacity to better serve children with a dual diagnosis of intellectual/ developmentally disabled (I/DD) and behavioral health needs. The request will fund comprehensive assessments and services, to include home health care, rehabilitative and personal care services, and an outpatient clinic at the Murdoch Center. (This is funded through the targeted reinvestment of community services funding in the base budget.)

Medicaid

  • Medicaid Rebase. Provides funds for changes to enrollment, utilization, costs, rates, and services associated with the Medicaid program. This recommendation reflects the amount of change from the base budget to fund the current Medicaid program in the upcoming biennium. This would include funds to address autism behavior services under Early Periodic Screen Diagnosis and Treatment requirements (EPSDT).
  • Expand DD Innovation Waiver Slots. Provides funds for changes to enrollment, utilization, costs, rates, and services associated with the Medicaid program. This recommendation reflects the amount of change from the base budget to fund the current Medicaid program in the upcoming biennium.
  • Extend DD Innovation Waiver Slots to Lower-Acuity Individuals. Fully funds an additional 1,000 NC Innovations waiver slots, effective January 1, 2018, for individuals that do not need the full range or intensity of services offered under the current waiver, but who will benefit from service at their specific level of need. (This is funded through the targeted reinvestment of community services funding in the base budget.)

The Senate and House are coordinating on the development of NC’s two-year budget, set to roll out in the coming weeks.

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.

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.

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!

 

Craven County Chapter Leader Recognized

Kim Hoffman award 2

Kim Hoffman has selflessly given hours and hours of service as the Leader of the ASNC Craven County Chapter since January 2015. With the help of other dedicated volunteers, she has touched so many lives through the Chapter, organizing dozens of educational events, social activities, and awareness efforts in her community. Kim’s passion and energy never cease to amaze us at ASNC!

We are not the only ones who notice her dedication. On March 2, Kim was honored at the “I Love That Lady” gala in New Bern. She was among seven women who were named finalists after being nominated by members of their community. Kim was one of the runner-ups and won $1,000 for the Craven County Chapter.

“It was well-deserved recognition for Kim and all the work she has done in Craven County to bring awareness to the community and help for the parents and families in the area,” said Terry Fetzer, Regional Chapter Coordinator. “The room was packed with wonderful ladies, and this was really a special highlight.”

Kim Hoffman awardKim said it truly was a wonderful evening. “I could not stop smiling,” she said. “Just to be honored … and to get this kind of recognition never crossed my mind. I am honored and blessed to serve this chapter 100 percent.”

The Chapter has big plans for its award money. “We will continue to keep our chapter busy with workshops and sensory-friendly events,” Kim said. “We will continue to be a support system for our families and a resource for them so they don’t feel alone. We are always encouraging new things for our kids to push them with their parents help and expose them to new life experiences they never thought were possible.”

Kim’s son Maxwell, who was diagnosed with autism when he was 4, is 11 now and “doing fantastic,” she said. “He is my colorful gift from God.”

“I know I’m the Chapter leader, but this Chapter is for me as well. I can only share my experiences with other parents in hopes that they know that with the right resources, our kids are brilliant and smart. I would never change a thing about this Chapter.”

 

For information on how you can become involved with one of our 50+ Chapters around the state, click here. No chapter in your area? ASNC works with local families to start new groups. Contact Marty Kellogg at mkellogg@autismsociety-nc.org for more information.

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.

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.