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

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

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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.

TIPS Serves Adults with Autism

tips-167Serving others is obviously important to members of the Triangle Indian-American Physicians Society (TIPS); they are, after all, in health care. But serving outside of their chosen careers is also important to them. For years, members have volunteered their efforts and expertise at free clinics all around the Triangle and at a yearly free screening.

 

Three years ago, TIPS wanted to give back to the local community in a different way. They worked with friends and local business leaders to research charities and decided the Autism Society of North Carolina had the kind of impact they were seeking.

 

“ASNC has been the leader in helping not only families but adults with autism. Some of the success stories of adults being able to be a functioning part of our society really hits close to home,” a TIPS board statement said. “We as health-care providers are always trying to make a positive impact on patients, and we feel ASNC also is doing the same for people living with autism in our state.”

 

Several TIPS members have loved ones with autism and others frequently work closely with patients with autism as in their health-care practices. In addition, ASNC has supported multiple adults with autism who have gained meaningful employment at one member’s local Raleigh pharmacy.

 

TIPS has held three events to benefit ASNC: two golf tournaments and a gala with live and silent auctions. These events raised close to $100,000 to benefit ASNC’s Employment Supports department, which enables adults with autism to become contributing members of society and feel a part of the communities in which they live.

 

The events also brought in hundreds of attendees, raising awareness of autism in the community, a success that the TIPS board notes is immeasurable.

 

tips-133Kristy White, Chief Development Officer, praised the dedication and time that the members of TIPS put into their events to give adults with autism full and meaningful lives. “I think it is so remarkable what they give on a daily basis through their work, and then to do this for us in their spare time. They spend every moment making a difference in each and every life.”

 

We are grateful for the partnership of TIPS and excited to see its future!

 

The TIPS board stated, “We hope to continue to raise awareness about autism professionally as well as socially in the surrounding communities, and hope to keep hosting these great events to raise the much-needed funds to keep this program running and helping empower adults with autism.”

Supported Employment Brings Fulfillment

2014-11-07-adamricci-003-terry-hamletEditor’s note: This article previously appeared in ASNC’s Spectrum magazine.

David Roth’s parents never have to wake him up in the morning or push him to get out the door on time for his job. The 27-year-old with autism works at the Courtyard in Chapel Hill, mostly in the fast-paced, physically demanding laundry, but he is always happy to go.

“He loves to work. He absolutely loves it,” said his mother, Susan Roth.

David started working at the hotel when he was still in high school. It was a volunteer position, facilitated through East Chapel Hill High School, where the young man was having some behavioral issues when he was made to do things he did not want to do. “He was absolutely the happiest when he was out in the community and especially when he was at his job,” Susan said.

Now, almost a decade later, David holds a paying position at the Courtyard along with two other part-time jobs, with the support of an employment supports instructor from the Autism Society of North Carolina (ASNC). His mother says the jobs have helped him learn how to interact with other people, provided the consistent schedule that he needs, and given him pride and a sense of accomplishment. They have even improved his reading skills because he is interested in reading about his job duties as opposed to school topics.

Lorraine La Pointe’s 25-year-old son with autism, Adam Ricci, also holds several part-time jobs. She says they have “opened up his circle”; when she is with him in the community, he always sees someone he knows. She also noticed that Adam has recently matured. “I think it really has changed him.”

Kathryn Lane, who is Adam’s employment supports instructor through ASNC, agrees, saying that Adam is calmer on the job than at other times. Having a job has also taught him responsibility as it requires him to be punctual, have clean, neat clothing, and manage his time as he completes tasks, she said.

“Seeing the progress is really rewarding for me,” Kathryn said. “The goal is to make him independent someday.”

For individuals with Autism Spectrum Disorder (ASD), meaningful employment is a key part of a fulfilling life, but studies have shown that as many as eight out of 10 are unemployed or underemployed. David Ingram, ASNC Employment Supports Director, said that individuals with ASD improve their odds of obtaining integrated employment 400% through using job placement services from an organization such as ASNC while using Vocational Rehabilitation supports.

Businesses giving back

2014-11-07-adamricci-004From the employers’ viewpoint, providing job opportunities for individuals with autism is a win-win situation.

“The benefits that we have with David … it actually keeps us humble, grounded, and grateful,” said Lisa Giannini-White, the Director of Operations of Southpoint Animal Hospital in Durham, where David Roth works in the afternoons. “We thoroughly enjoy having David here.”

Terry Hamlet is President of S.H. Basnight and Sons, a small Hillsborough company that makes specialty hardware, doors, and frames. Terry said she and her employees benefit from working with Adam and another employee with autism. “I think that at the core of each person, they like the idea of doing something for other people. I think that in some way, that is happening here,” Terry said. “Hopefully they can feel good about the fact that they work for people who care enough about other people to give them an opportunity.”

Lisa said it was a part of Southpoint Animal Hospital’s original business plan to “offer opportunities to everybody.” Before David came to work for them, she did research about how to support individuals with autism and also consulted with his father about David in particular. When she talked to her employees about bringing David on, they were all for it, she said, and so she shared what she had learned.

Valued employees

But it’s not just about a feeling they are doing good; David is a valued employee, a consistent team player with great attention to detail, Lisa said. “He helps others see that well, gosh, I guess I could be more detailed, or I guess I could be a little bit of a harder worker.”

Alex Griffin also brings strong attention to detail to his position at the Center for Urban Affairs and Community Services (CUACS) at NC State University. Alex, a 30-year-old with high-functioning autism, does not need the assistance of an employment supports instructor, but he did participate in ASNC’s JobTIPS program, which emphasizes the development of social skills that are critical to identifying, applying for, securing, and maintaining employment. The group facilitator provides coaching and feedback for job interviews, encourages peer interaction, and helps members develop a broader community network.

Sheila Brown, Alex’s supervisor, said he does not really need supports at CUACS and performs well in a variety of duties. “He’s got a great attitude, and everything he’s done for us he’s done very well, very thoroughly,” she said. The reviews of assessments and testing that their work group do can be tedious and require a lot of attention, and Alex has found things they might have missed, she said. He also is very responsive to feedback and happy to do anything that is asked of him.

Alex said he would like all employers to know that “our value as employees isn’t overshadowed by the minor cost of accommodation.”

David Ingram said, “Individuals with disabilities, including ASD, experience less turnover than nondisabled individuals, allow access to numerous tax incentives, and return an average of $28.69 for each dollar invested in accommodations. Individuals with disabilities and their networks represent a $3 trillion market segment, and 87% of customers prefer to patronize businesses that hire employees with disabilities. I’m excited to see businesses starting to understand the value in hiring workers on the autism spectrum and contact us seeking support in placing someone with ASD with their corporation.”

Supporting the workers

2014-11-07-adamricci-007S.H. Basnight and Sons’ employees with autism are productive parts of the business because Terry matched tasks that the company needed to have done with their skills, just as she would with any employee, she said. Having patience and teaching how to complete tasks properly is necessary with any worker, she said. “There is no employee ever that is totally easy. The key is to work with people to help them do things correctly.”

“It’s very important for everybody – it’s important with our children, it’s important with our co-workers, it’s important in our businesses – when there is a weakness, to help that person develop that.”

Adam’s mother, Lorraine La Pointe, said Basnight has done an “amazing” job of supporting him. “They are just naturals. He operates on a visual schedule, and they have magnetic boards set up for his tasks. They are just on it.”

The visual task boards give Adam the opportunity to choose the order in which they will do the tasks for that day as well the independence to move from one task to another, Terry said. At Southpoint Animal Hospital, Lisa also set up visual supports for David, such as laminated sheets showing his duties in the restrooms.

Terry also said that employment supports instructors are a key to success for individuals with autism. With the job coaches supporting their clients well, there is more potential for growth in the job. Kathryn Lane, who has worked with Adam since July, said she has seen that; he has started recognizing more details at his job and times that tasks were not done correctly.

Part of the team

For employees without onsite support staff, many issues can be avoided with just a little research about autism and the employee in particular, said Sheila Brown, Alex Griffin’s supervisor at NC State. “We tend to have a stereotypical picture of what autism is, but it’s really more what autism is not,” she said. “Just be open, trying to make sure that the person is comfortable with what you’re asking them to do until they feel a comfort level with you and your staff.”

Adam feels very comfortable with his Basnight co-workers and Terry Hamlet; when he sees her in public, he greets her with a hug. She said they strive to make him a part of their team. Adam’s mother said they have gone a step further, including him in parties for holidays and birthdays; “they treat him like family.”

Terry says the effort was worth it.

“My life and the life of our company is richer for having had them here. I really believe that.”

For more information about Employment Supports, please go to www.autismsociety-nc.org/employmentsupports

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.