Chef Pepper Jack’s Food Drive

jack-food-driveWhen 17-year-old Jack Cullen began to notice people on streets holding signs requesting donations, food, or jobs, he started asking questions. He wanted to understand why they didn’t have food or jobs. He wondered whether they had homes or other belongings. The growing concern that Jack displayed led his Autism Support Professional, Holly, to ask him whether he would like to help people with these kinds of needs. Jack enthusiastically embraced the idea, and together, they began looking for ways that they could serve people whose most basic needs were unmet.

After doing their research, Jack and Holly chose to become involved with the local food bank, but it was in an old warehouse that did not have air conditioning, and the noise from the machinery was very loud. This environment presented a variety of sensory challenges that could have prevented Jack, who has Autism Spectrum Disorder, from becoming involved. But instead of allowing those barriers to limit Jack, Holly helped him find a different approach. Instead of doing work inside the food bank, after food was already collected, Jack worked with Holly on a plan for his own food drive. This allowed him to collect and sort the food in a suitable environment, before delivering it to the food bank.

Together, Holly and Jack created flyers and collection bins for the food drive. Jack named his endeavor Chef Pepper Jack’s Food Drive, based on his favorite game, Skylanders. Holly coached him on how to talk to family, friends, and community members to solicit donations. He passed out flyers and set up collection bins, and it wasn’t long before donations starting coming in! As his box filled, he sorted the donations, loaded the boxes into the car, and, with Holly’s help, took them to the food bank. Jack also sent handwritten thank-you cards to friends and family who had made donations.

So far, Jack has made three trips to the food bank, with his biggest donation weighing in at 120 pounds! Jack’s original goal was to collect 500 pounds, but when asked whether he plans to keep the food drive going, he answered, “Yes! Absolutely!”

The Autism Society of NC provides a variety of community-based services that enable individuals with ASD not only to receive the day-to-day support they need and to gain valuable skills, but also to find and engage in opportunities to become involved in their communities in a meaningful way. Jack’s story is just one example of how ASNC is committed to empowering individuals to connect with others and achieve goals that bring them personal satisfaction and purpose. Learn more here or contact us at 800-442-2762.

Managing Frustration and Anxiety

 

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

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

Keep Your Cool

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

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

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

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

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

Build a Positive Relationship

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

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

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

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

Manage Crises

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

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

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

Work on Repeat Behavior Problems

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

Some of the typical triggers Dr. Baker listed were:

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

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

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

Demands for Work

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

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

Dealing with Fear

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

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

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

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

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

Waiting, Accepting No, Stopping Fun

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

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

Self-esteem: Mistakes, Losing, Teasing

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

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

Unmet Needs for Attention

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

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

Sensory Needs

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

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

Self-Calming

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

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

 

ASNC Celebrates Services Staff

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Jennifer Dixon (left) and her client

This article was contributed by Kari Johnston, ASNC Director of Services.

Each fall, the Autism Society of North Carolina has the privilege of celebrating the amazing work that our Direct Support Professionals do every day, providing crucial support and opportunities for individuals with autism. We do this in a few ways. During our celebration of Direct Support Professional Recognition Week, our regional services offices found large and small ways to thank these important people for their dedication to the people they serve, ranging from morning donuts and breakfast buffets, to a mini-carnival complete with food, activities, and game booths.

becky-buchananThis year, ASNC also was pleased to send one of our Community Skills Instructors, who was nominated by her supervisors, to a weekend at Great Wolf Lodge to participate in a Direct Support Professional Appreciation event held by the NC Alliance for Direct Support Professionals. Becky Buchanan of Asheville was selected to attend this event in recognition of her exemplary dedication to and work with those she supports. Becky and her family were treated to nationally recognized speakers, waterpark fun, and a great opportunity to network with other direct support professionals.

Finally, this marks the 10th year that we are honoring one direct support Direct Support Professional with the John and Claudia Roman Direct Service Award for outstanding commitment to individuals with autism and their families. The Roman Award, a cash award of $1,000, was endowed by Lori and Gregg Ireland to honor Christine Roman, the direct service professional who worked with their son, Vinnie. It was named for her parents, John and Claudia Roman. This year, we congratulate Jennifer Dixon of Raleigh for being named this year’s Roman Award recipient. Jennifer was nominated by the Coleman family for exhibiting dedication that “goes beyond the expectations of her role every single day” throughout the past 2½ years of supporting their daughter.

In her nomination, Cristi Coleman shared that Jennifer, who has two of her own daughters, often refers to Cristi’s daughter as her “third daughter.” She said, “We never have to worry about her safety or well-being” and described how Jennifer enables her daughter not only to achieve the goals that they have set with their daughter, but to exceed them with the support that she provides. Cristi said Jennifer regularly sets aside her own plans, without mentioning them, to give their family needed respite. She went on to say that Jennifer regularly does things for the family that are not part of her paid hours or responsibility. “For example, she booked tickets to see a play that was open for special needs individuals. She told me that she and [my daughter] were having a date that night, and my husband and I could have a free night to ourselves. That really means a lot … and was something extra she did out of her own heart.”

Jennifer puts a great deal of effort into finding opportunities in the community for both enjoyment and personal growth for Cristi’s daughter, who “looks forward to this time and enjoys the many different activities they do,” Cristi said. Jennifer ensures that she has the ability to make her own choices and “gives her a voice.”

We are thrilled to honor Jennifer and would also like to express our gratitude for the passion and commitment exhibited by each and every dedicated person that we are fortunate to have supporting individuals and families through the Autism Society of North Carolina.

Q&A with Dr. Jed Baker, Autism Expert

 

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On Friday, November 4, Dr. Jed Baker will lead a daylong conference that touches on two very important topics for families and caregivers: managing frustration and anxiety and teaching social skills. Dr. Baker graciously shared some insights and previewed his talk in a Q&A recently.

 

Why is it important for caregivers to think about managing their frustration and anxiety levels when interacting or working with their child or student?

We fight fire with water. To respond intelligently and with understanding to a challenging situation requires us to manage our own emotions as caregivers. Our own reactivity can hijack our better judgment and escalate the problem rather than resolve the issue.

Everyone experiences anxiety and frustration. How does the experience differ for those on the autism spectrum?

Social perception, sensory, language, and learning issues can make many situations more confusing, unexpected, and frustrating to those with autism. Difficulty transcending the moment can make a temporary problem, like not getting to play a videogame, seem like a life-threatening crisis.

You provide concrete strategies that address anxiety and frustration in caregivers and children with autism spectrum disorder. Can you provide a preview of one example?

Preventing frustration depends on understanding how an individual perceives a difficult situation. For example, not getting to do a desired activity can seem like an unbearable issue. Providing a timer or visual schedule can help an individual know he will get what he wants, allowing him to wait more calmly.

As another example, anxiety about confusing classwork can make kids feel ashamed and afraid to try. Learning how to undo the shame of asking for help and disentangling it from judgments about intelligence can free students to more calmly approach challenging work in an effort to grow.

The conference also addresses social skills, including skill acquisition and motivation to use social skills. What’s the difference?

Acquisition strategies refer to ways to teach skills. We need to pick strategies that match an individual’s language ability. Teaching a skill does not ensure the individual wants to learn or use the skill. Motivation refers to “what’s in it for the individual” to learn and use the skill. Sometimes we use external rewards like favored activities or objects as rewards for using a social skill. Yet more importantly for motivating socializing are natural rewards like wanting a friend or making the interaction so much fun the individual wants to interact.

The social skills portion of the day also spends time focusing on peer interactions, creating acceptance, and reducing bullying. Why are these three things so important?

Socializing is a two-way street. We cannot try just to get those with ASD to fit in but also to get others to reach out. And all students have a right to a safe and accepting environment. One key to anti-bullying is to empower the peer community to police itself with upstanding peers.

Want to learn more? Join us on November 4 in Raleigh. To learn more about the conference and register, click here. The ASNC Bookstore will also be at the event with Dr. Baker’s numerous books. Register soon; the early bird price is valid through midnight October 16.

Kids Loved and Accepted as They Are at New Camps

 

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Parker and a friend at ASNC’s Carteret County summer day camp

Six-year-old Marshall Wingfield loves people, but he becomes overwhelmed in public and has always been a bit of a homebody, his mom says.

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Marshall loves video games

“He wants so much to fit in and have friends,” said Elaina Wingfield of her son, who was diagnosed with autism last year during his kindergarten year. “But his challenges make that very difficult. He doesn’t understand personal space, proper speech volume, or the social cues that come natural to us.”

This summer, Marshall found a place where he could make friends and be himself: ASNC’s new Greenville summer camp. “This is the first place he’s ever been that he wants to come back every day,” his mom said. “Marshall made friends that he wouldn’t have met otherwise. He felt confident attending the camp.”

fb_img_1472247633436Marshall liked it so much that he is attending the new afterschool program, as well. “It’s quiet, and they know how I am,” he explained to his mother when she asked why he wanted to go. After camp, he didn’t have to spend hours decompressing at home as he does after being in other environments, such as grocery stores, Elaina said. And they have a pool; one of Marshall’s favorite activities besides Minecraft is swimming. “He knew when they would go and how many days he’d have to wait,” she said.

The new programs in Greenville are part of an array of Social Recreation programs in four Eastern NC locations made possible by funding from Trillium Health Resources. The initiative supports children and adults with autism through programs in underserved areas of the state, helping them to improve their social and communication skills, peer networks, and physical well-being.

Social Recreation Services Director Sara Gage said, “We want them to feel love for who they are. We like to provide an environment that understands them and gives them the opportunity to flourish just as they are.”

Summer Day Camp ran from 9 a.m. to 5 p.m. on weekdays with a counselor-to-camper ratio of 1:1 or 1:2 based on self-help and behavioral needs. Campers ages 4-22 enjoyed swimming, arts and crafts, gym time, and all of the typical camp activities in Greenville, Wilmington, Carteret County, and Brunswick County. “As a parent, I loved getting the many arts and crafts they did,” Elaina said. “He even colored! He colored! He hates to color!”

In addition to benefiting the individuals with autism, the programs help families by providing respite and care tailored to individuals with autism. “This camp meant peace of mind,” Elaina said. “Like so many parents of autistic children, we weren’t in a financial position to pay for a summer camp that could or would accommodate his needs. Anything extra we have these days is going to medications, co-pays, and deductibles.”

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For Parker Samples’ parents, the day camp in Carteret County meant they could both keep their jobs this summer. Parker is a goofy and funny 12-year-old, always seeking any attention he can get. But he also has trouble communicating his wants and needs, and this can lead to frustration and meltdowns. Parker has always had to be taken care of by a family member rather than going to a camp during his school breaks or an afterschool program with other children.

His parents have made many career decisions based on what is best for their son, from cutting their hours, to giving up overtime, to passing up better positions in favor of schedule flexibility. This summer, they planned for his father, Bud, to quit his job to care for Parker during the days and find another job at night.

But then Parker was accepted to the new day camp. Much more than saving their jobs, the camp made Parker happy. “I think his favorite parts of camp are all the people,” Bud said. “All the attention he gets from everyone, even when it disrupts what they are doing at the time, is always so positive.

“I really can’t convey how this summer has helped Parker and us at home, just knowing that there really are people who care and understand what these special kids need. It’s not just a place for them to go during the summer, it’s not just the pool and bouncy houses – which are awesome – it’s the people that you trust with your kid, to make sure they are happy and safe and more so understood.

“There are reasons that they act how they do sometimes, from fear to anxiety or maybe they just don’t like the color a wall is,” he said. “And this was a whole house of people that understood all of that, and more than just understood, they accepted it and Parker into their hearts.”

 

To learn more

For more information about ASNC’s Social Recreation programs, please go online to www.autismsociety-nc.org/socialrecreation or contact the director for your area:

  • Greenville: SRP_Greenville@autismsociety-nc.org
  • Wilmington: SRP_Wilmington@autismsociety-nc.org
  • Brunswick: SRP_Brunswick@autismsociety-nc.org
  • Carteret County: SRP_Carteret@autismsociety-nc.org

 

 

 

 

 

 

 

 

 

 

 

 

2016 Legislative Wrap-Up: Other Highlights

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This article was contributed by Jennifer Mahan, Director of Advocacy and Public Policy at ASNC. It is the third of three parts wrapping up the NC General Assembly’s 2016 short session.

IDD Caucus: Establishment of a bipartisan, bicameral IDD caucus: North Carolina is the fourth state in the United States to have an officially established intellectual and/or developmental disability caucus in both the NC House and the NC Senate. A caucus is a legislative group that comes together to focus efforts on a particular issue, in this case, to research, better understand, and advocate for legislation to address the needs of people with IDD. The IDD caucus is bi-partisan, includes both House and Senate members, and has just begun to get organized and start its work; ASNC is excited by this legislative interest in IDD issues, including autism, and we look forward to working with the members in the sessions to come.

Free DMV identification for people with IDD, HB 1033: ID Card Fee Waiver/Disability passed the House and Senate and allows individuals with an intellectual and/or developmental disability to obtain free non-driver’s identification from the NC Department of Motor Vehicles beginning October 1. Individuals must present a letter from their physician stating that they have a developmental disability to obtain free identification. This ID can be used as an approved document for Voter ID requirements. (Note that under recent voter identification laws, individuals may obtain non-driver’s identification for free if they state it is “for purposes of voting.” These voter identification laws are currently under review by the courts and may or may not remain in place. The new law for free, non-driver identification cards for people with DD would remain in place regardless of what happens with voter identification laws.)

Enact Uniform Law on Adult Guardianship, H817: This law enacted in 41 other states will clarify issues around interstate jurisdiction, mobility, and transferability of guardianship and interstate recognition of guardianship orders. The bill was worked on by guardianship and advocacy organizations, and was passed and signed into law.

Military families stay on Innovations waitlist, HB 842: Establishes a virtual wait list for families in the military waiting for waiver slots. Allows families to remain on the waiver wait list when relocated outside of North Carolina for military service, as long as the family retains its North Carolina legal residence and intends to return upon completion of the military service.

Medicaid Transformation changes: North Carolina has already passed legislation that will, over the next 5-7 years, move our Medicaid system to a managed care model offering both statewide private managed care as well as regional health system managed care options. The goal is to improve health outcomes and integrate physical and behavioral health care, while controlling costs. This year, clarifying changes were made to that bill based on the 1115 demonstration waiver submitted by North Carolina to the federal government that will:

  • Remove the “Department of Health Benefits” as the single state entity in charge of Medicaid and return authority to the Department of Health and Human Services, as required by the US Centers for Medicare and Medicaid Services (CMS).
  • Make several key adjustments around who and what will be covered in the capitated (managed care) system and require NC DHHS to submit reports on the progress of the waiver to the Joint Legislative Oversight Committee on Medicaid and NC Health Choice. New groups and programs exempted from the 1115 managed care demonstration waiver include:
    • PACE
    • School services provided under an IEP, including audiology, speech therapy, physical therapy, nursing, and psychological services, performed by schools or individual contracted with LEA.
    • Children’s Developmental Services Agencies
    • Presumptive Medicaid eligible people

 

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