Focus on Strategies for Anxiety at Annual Conference

 

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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.

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Join Our Campaign for Acceptance

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Join us this April as we again focus on acceptance and inclusion, not just awareness, for National Autism Awareness Month. The #A2AforAutism campaign to move communities from Awareness “2” Acceptance, started some conversations last year, and we can’t wait to see how it builds this year.

We want people with autism, and their families, to feel welcomed in their communities. We want people to know about autism’s challenges, so they can be more accommodating. But we also want them to know how their lives can be better when they include people with autism.

How can you help share this message and move your communities from Awareness “2” Acceptance? Here are some ideas:

  • Use the hashtag #A2AforAutismeverywhere: Facebook, Twitter, Instagram, Pinterest!
    • Share photos of autism awareness events that you attend.
    • Share pics or videos of your child with autism playing with neighborhood friends. Or, if you have a neurotypical child, them with their friends with autism. (Remember to get parents’ permission for sharing on social media.)
    • Share photos, videos, or stories of your loved ones with autism that show off their unique talents.
    • Share stories of inclusion.
    • Always remember the #A2AforAutism, so we can share your images, too.
  • Share ASNC’s social media posts throughout the month.
  • Join us for World Autism Awareness and Acceptance Day on Sunday, April 2, at Camp Royall near Pittsboro.
  • Wear the #A2AforAutism T-shirt as often as you can wash it. (Don’t have one? Buy one from the ASNC Bookstore)
  • Put an #A2AforAutism magneton your vehicle (Also available from the Bookstore)
  • Tell teachers, club leaders, faith communities, etc., about our online materials that can help them create acceptance in their communities. The free resources include videos, informational items, ideas for crafts and fundraisers, and more.
  • Ask to provide a presentation or displayon acceptance in your clubs, schools, faith communities, etc. You can find ideas on our website or the ASNC Communications Department can help you with materials.

Imagine what acceptance could do for our loved ones with autism. We thank you for your efforts throughout April!

 

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

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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

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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.