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.

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!

 

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.

 

 

 

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.”

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.

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.