Selecting a Board Certified Behavior Analyst

Little boy with preschool teacher in classroom

This article was contributed by Leica Anzaldo, Training Manager for the Autism Society of North Carolina.

Applied Behavior Analysis (ABA) has gotten a bad rap over the years, and up until a few years ago, I too had some misconceptions. Common assumptions are that ABA:

  • creates robotic results
  • is very rigid and does not allow the child to play
  • is a pre-packaged treatment
  • is only for young children
  • does not include any other treatments
  • is done at a desk or section of the room, etc.

What ABA truly is, is the applied practice of behavioral principles in everyday settings and situations. The purpose of ABA is to 1. Increase desirable targeted behaviors and 2. Decrease undesirable targeted behaviors. For children and adults with autism, ABA has been used to help develop many skills in areas including communication, social, self-help, self-regulation, and play. These principles can also help decrease maladaptive behaviors such as aggression, self-stimulatory behaviors, and self-injury. ABA is evidence-based, is appropriate for lifelong interventions, and is not only for the treatment of undesirable or maladaptive behaviors.

The Clinical and Training Department of the Autism Society of North Carolina (ASNC) provides ABA interventions to participants in several ways. The department is receiving a growing number of referrals for Specialized Consultative Service cases throughout the state. Board Certified Behavior Analysts (BCBA) and/or Licensed Psychological Associates (LPA) develop behavior plans based on the history of the individual, assessments, data, and most importantly, observation. The plan is then reviewed by a Licensed Psychologist and ASNC’s Human Rights Committee. The BCBA or LPA then coaches the family and/or skill-building staff on the strategies defined in the plan, collects and analyses data (such as ABC data, frequency measures, etc.), and makes recommendations. This service is available for all ages and abilities who receive services through the Innovations Waiver. Some funds at the local level also may support this service, and this service is available through private-pay services and includes implementation of treatment options for young children. This typically involves tutor staff who are trained on the evidence-based treatment, coached on the child-specific elements of the plan, and supervised regularly by a BCBA. These services are typically only available via private-pay, because ABA and autism insurance coverage is not available in North Carolina with few exceptions. Some younger children do qualify for Medicaid Waiver services or locally funded services (through the MCO). Also, some insurance plans – if they originate in a state with autism or ABA coverage or include an autism rider – will cover ABA services. For more information on your specific insurance carrier, please contact the carrier’s claim or care coordinator directly.

Finding a Good Board Certified Behavior Analyst

So how do you select a good BCBA, or paraprofessional who will implement the goals? First, consider whether the person is a good “fit” with your family. Developing relationships among the BCBA, paraprofessional, and individual receiving intervention is critical. I will often encourage families to allow myself and/or the paraprofessional to spend several sessions just getting to know the child or adult before beginning any interventions. If a BCBA shows up at your door with a “prepackaged” treatment, I would be wary. Each child and adult is unique, and therefore their intervention package should be unique to them. If your child and the BCBA don’t “click” after several sessions, or the BCBA or paraprofessional’s arrival immediately induces unmanageable stress and anxiety in your child, this is a signal that perhaps you should ask whether other staff are available.

Creating an ABA Program

The BCBA should always include you, the parents or caregiver, in treatment. A parent/caregiver is critical to the success of each program. They are the ones who know the most about the person and will be responsible for prompting and reinforcing ongoing, everyday activities in promotion of generalization and collecting data on a daily basis. The ABA program should be written so that it can be incorporated all day, every day. ABA should never take place in only one location, with one person at a certain time of day.

Intervention programs should include the following:

  • antecedent manipulation (including the use of visuals in many situations) that cues a positive behavioral response
  • an emphasis on increasing functional alternative/replacement behaviors rather than only decreasing problem behaviors
  • programming that includes multiple settings/environments
  • data-driven decision making
  • preference assessment and capitalization of motivating tactics, a plan for reinforcement, plan for prompting and prompt fading, communication strategies including in many cases promotion of social bids including joint attention.

I recommend that several assessments be implemented before beginning any ABA program. The assessments are not mandatory, but they provide a baseline from which to build your program.

  • a diagnostic assessment, using an autism-specific diagnostic tool such as the Autism Diagnostic Observation Schedule (ADOS)
  • a developmental assessment to measure cognition, communication, motor, adaptive, and social skills
  • a criterion assessment to measure specific areas that may be targeted through intervention such as: Functional Behavior Assessment, Early Start Denver Model Assessment (ESDM), Assessment of Basic Language and Learning Skills (ABLLS), the Verbal Behavior Milestones Assessment and Placement Program (VB-MAPP), and assessment of social skills, joint attention or play

Don’t be turned off if you experience variations in treatment. Many skilled clinicians vary treatment based on their expertise and the individual’s needs and skills. For example, I often employ elements of Pivotal Response Treatment, Early Start Denver, Structured Teaching, and RDI, many of which are based on Applied Behavior Analysis. The effectiveness of a program should be obvious through the data summaries you receive and the observable improvements in your loved one. Keep in mind, though, that change takes time. The National Professional Standards Project recommends at least 25 hours a week of therapy. This may seem very unreasonable for many. Keep in mind that this is a recommendation, not a mandate, and you should do what is comfortable for your family. Also keep in mind that those hours can and should include your implementation of goals on a daily basis.

If you are interested in hearing more about consultation and intervention programs available through the Autism Society of North Carolina, please contact the Clinical and Training Department at 919-865-5059.

Leica Anzaldo can be contacted at 704-894-9678, ext. 1603, or lanzaldo@autismsociety-nc.org.

Autism Insurance Update

explanationofbenefitsJuly 15, 2014

Background: Autism insurance reform legislation was passed by the NC House last year (H498) but the bill has yet to be taken up by the NC Senate. The bill would ensure that health insurance sold in North Carolina that is regulated by the NC Department of Insurance covers the diagnosis and treatment of Autism Spectrum Disorder. The bill would cover children and young adults from birth through age 23, if they were diagnosed by the age of 8. It would cover screening, diagnosis, and a variety of medically ordered therapeutic and behavioral interventions shown to ameliorate the symptoms of autism, including applied behavioral analysis (ABA). Coverage of behavioral interventions would be capped at $36,000 per year.

Currently the NC Senate has two autism bills pending in committee, H 498, passed by the House last year, and Senate Bill 493 (S 493), a regulatory reform bill that includes language about autism insurance. In the last two weeks neither bill has moved as the House and Senate have been focused on negotiations over the state budget. If you have not contacted your NC General Assembly senator recently about autism insurance, now is the time. The session has gone longer than usual, due to disagreements over the state budget, but a compromise will be reached on the budget in the next week or two and the session will end. We need to make sure the Senate takes up the autism bill soon! Details on contacting your NC Senator are below.

What’s next for autism insurance reform and the regulatory reform bill?

In review, S493, is Health and Safety Regulatory Reform. The House passed a new version of a Senate bill which now includes autism insurance reform with very similar bill language to House bill 498 (which was passed last year), as well as other health and safety issues. A new section in S 493 requires behavioral analysts to be licensed in North Carolina by a new licensing board, which is similar to other health-care professions. Because the state employees’ health plan has voluntarily adopted autism insurance (effective January 1, 2015), the section of the original language that covered state employees has been removed in the new bill. Because the House stripped a Senate bill that the Senate has already passed, and inserted the new health and safety regulatory bill language, the Senate has several options for how to proceed with the new bill language. They can:

  1. Concur with the House’s version, in which case the bill has passed and can move on to the governor’s desk
  2. Or, they can vote to not concur with the new bill language, and the bill would move to a conference committee. The House and Senate would each need to appoint committee members to work out differences between the two bills before the session ends.

Right now, both S493 and H498 remain in committee awaiting action by the Senate. At this time, we do not know what action the Senate will take on the new legislation.

How you can help:
Call or write your General Assembly Senator now! The insurance industry continues to oppose autism insurance reform legislation that would ensure better coverage of autism treatment in private insurance and we are concerned that Senators are listening to them, rather than to families and the facts.

You can find out who your state senator is here by entering your address in the second map. We urge you to be respectful in your comments and ask for their support in getting autism insurance coverage passed. (Please note, we appreciate the support of our friends and family in other states, but right now legislators need to hear from people in their own districts.)

Some ideas about what to say in your message:

  • Tell them a short version of your story of how autism is affecting you, your family, or a person you care for and what insurance coverage would mean for you.
  • Ask them to support autism insurance reform legislation in the Senate.
  • Treatments for the symptoms of Autism Spectrum Disorder are effective and result in better quality of life as well as lower future costs.
  • Autism treatments are medically ordered, proven therapies delivered by professionals. They are not “educational” or “experimental.”
  • The cost of autism health benefit coverage is very low; in states that have enacted it, the average cost is .31 cents per member per month.
  • The bill contains a small-business opt-out, if coverage related to autism causes premium increases of 1% or more.
  • The bill has no Affordable Care Act impact: There is a carve-out of all ACA plans, which means the ACA is a non-issue, and guidance from the federal government is not necessary.

If you would like to visit your NC General Assembly Senator to talk with them in person, please call their office directly, say you are a constituent, and ask for an appointment. Please contact the Autism Society of North Carolina at the number or email below for help in navigating the General Assembly, in locating the right offices, or with talking points and prep for your visit.

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

All Students Count: Testing for Students with Significant Cognitive Disabilities

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This article was contributed by Vickie Dieter, ASNC Autism Resource Specialist.

All students count. It is a worthy sentiment, but it has not always been the case in terms of students with disabilities participating in state achievement tests. Upon signing the No Child Left Behind Act (NCLB), President George Bush made a statement that might explain poor educational outcomes and the exclusion of students with disabilities in state performance measures: “It is the soft bigotry of low expectations.” In his speech celebrating the signing of the act, President Bush said “the fundamental principle of this bill is that every child can learn, we expect every child to learn, and you must show us whether or not every child is learning.”

At the core of the No Child Left Behind Act were a number of measures designed to drive broad gains in student achievement and to hold states and schools more accountable for student progress. They represented significant changes to the education landscape (U.S. Department of Education, 2001).

The Individuals with Disabilities Education Act (IDEA), amended by Congress in 2004, also included provisions that focus on improving the quality of education for all children, including children with disabilities. Both laws require that all children have access to the general curriculum and that every student count in school accountability measures so that high expectations for all students equals high achievement for every child. In North Carolina, access to the general curriculum means the Common Core State Standards for English Language Arts and Math, and the NC Essential Standards for other areas of education. For students with the most significant disabilities, access can be provided through the NC Extended Content Standards for the Common Core State Standards for English Language Arts and Math, and the NC Extended Essential Standards for the content areas.

Recently, US Secretary of Education Arne Duncan announced a new accountability framework that further raises the bar for special education. Under this new framework known as Results-Driven Accountability (RDA), the Department of Education will also include educational results and outcomes for students with disabilities in making each state’s annual performance determination under IDEA.

“Every child, regardless of income, race, background, or disability can succeed if provided the opportunity to learn,” Duncan said. “We know that when students with disabilities are held to high expectations and have access to the general curriculum in the regular classroom, they excel. We must be honest about student performance, so that we can give all students the supports and services they need to succeed.”

Today, all students with disabilities must be included in statewide assessments, such as End of Grade (EOG) or End of Course (EOC) testing. The Individualized Education Program (IEP) team determines how a student with disabilities, including students with the most significant cognitive disabilities, will take the statewide assessment. The decision should be based on each student’s educational needs, and parents should have meaningful participation in the decision process.

NCLB and IDEA include provisions for eligible students with disabilities to participate in general statewide assessments with or without accommodations. A few common accommodations include testing in a small group, testing in a separate room, extended time to take the test, multiple testing sessions, or allowing the students to mark in the test booklet. Before the accommodations to be used during state testing are discussed, the student’s IEP team or 504 team should document the accommodations to be provided during regular classroom instruction and testing. Accommodations for statewide testing should be consistent with accommodations used routinely for classroom instruction and classroom tests so students will be familiar with the accommodations before taking state assessments.

Alternate Assessments: Extend 1

The law allows states to provide alternate assessments for the small number of students who are not able to participate in statewide assessments even with appropriate accommodations. An alternate assessment based on alternate achievement standards is designed for students with the most significant cognitive disabilities to measure achievement separately in reading and language arts, math, and science. In North Carolina, this achievement test is called Extend 1.

The IEP team should have an exhaustive discussion regarding the use of appropriate testing accommodations before determining the need for a student to participate in an alternate assessment. Each member of the IEP team, including parents, should have access to information about alternate assessments so procedures for testing can be determined and documented on the child’s IEP. The team must also carefully review potential long-term consequences for state and local graduation requirements. This is especially important because the type of curriculum and state assessments in which a student participates can influence his or her eligibility to graduate from high school with a diploma.

So, who should participate in alternate assessments? In this state, the NC Department of Public Instruction has established the following criteria that students with disabilities must meet to participate in Extend 1:

  • The student has a current IEP.
  • The student is enrolled in grades 3-8, 10, or 11 according to PowerSchool. Note: Only students enrolled in 11th grade for the first time are required to take the NCEXTEND1 Alternate Assessment at Grade 11.
  • The student is instructed in the NC Extended Common Core or Essential Standards in ALL assessed content areas.
  • The student has a significant cognitive disability (i.e., exhibits severe and pervasive delays in ALL areas of conceptual, linguistic and academic development and also in adaptive behavior areas, such as communication, daily living skills, and self-care).

The vast majority of students with disabilities do not have a significant cognitive disability. The NCEXTEND1 is NOT appropriate for the following students:

  • Students who are being instructed in ANY OR ALL of the general grade-/course-level content standards of the NC Common Core State Standards or Essential Standards.
  • Students who demonstrate delays only in academic achievement.
  • Students who demonstrate delays primarily because of behavioral issues.
  • Students who demonstrate delays only in selected areas of academic achievement.
  • Students pursuing a high school diploma, including students enrolled in the Occupational Course of Study. (NC Testing Program, NC Alternate Assessment System, NCEXTEND1 Alternate Assessment (English Language Arts/Reading and Math Grades 3–8, Science Grades 5 and 8, English II at Grade 10, Math I at Grade 10, Biology at Grade 10, and Grade 11); Eligibility Criteria; NCDPI Division of Accountability Services August 2013).

The IEP must contain a statement about why the student cannot participate in the regular assessment, and how the particular alternate assessment selected is appropriate for the child. The statement should include information specific to the child and how the disability affects his or her participation in state testing. Following is an example:

John has a diagnosis of moderate autism. He has a severe delay in language and communication and uses an augmentative communication device. A recent psychological re-evaluation indicated that John’s IQ is 54. His recent educational evaluation and classroom-based assessments indicate that John’s reading is at the pre-primer level and his math skills are on late-kindergarten level. He scored a 2 in reading and 3 in math on last year’s Extend 1 test.

John exhibits significant delays in adaptive behavior and self-care skills. He receives modifications and accommodations to help him access classroom curriculum and tests. He has participated in the Extensions of the Common Core curriculum for two years. The IEP team determined that the Extend 1 test is most appropriate for John because his academic and adaptive skills are significantly below grade level, and because Extend 1 provides opportunities for John to demonstrate his knowledge and skills in ways that are better suited to his abilities than those provided on regular EOG tests. The regular EOG test is not appropriate for John because he has not had complete access to the regular third-grade Common Core curriculum/content on which the test is based, and because of John’s significant cognitive delays, it is unlikely he would be able to comprehend and respond to grade-level questions and reading passages on the regular test, even with accommodations.

Use of Alternate Assessments Should be Limited

It is clear that the intent of federal law is that a very small percentage of students with the most significant disabilities should take alternate assessments based on alternate achievement standards. Remember that North Carolina guidelines define a student with a significant cognitive disability, and, therefore, potentially eligible to take the Extend 1 alternate assessment as exhibiting severe and pervasive delays in ALL areas of conceptual, linguistic, and academic development and also in adaptive behavior areas, such as communication, daily living skills and self-care. It is important for IEP teams to make sure children truly meet these criteria before removing them from the general education curriculum and/or using alternate assessments to measure their academic skills. I believe it is especially important for children with Autism Spectrum Disorders whose language, communication, or behavior may interfere with their ability to demonstrate their true abilities. As a parent, if you don’t understand how the school is determining your child has severe and pervasive delays in all areas, please ask them to explain it to you. If you disagree with the evaluation or assessment data the school is using to identify your child as having a significant cognitive disability, federal law includes procedural safeguards concerning your rights as a parent and methods to resolve disputes between parents and schools.

It is also important to remember that curricula and testing should never drive the placement of any student with a disability, including students with the most significant cognitive disabilities. The law still mandates that children be place in the least restrictive environment: “To the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who do not have disabilities, and special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability of a child is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.” CFR (300.114(a)

For more on alternate assessments, check these resources:

As always, please contact your regional Autism Resource Specialist for information and assistance. Find one here.

Vickie Dieter can be contacted at vdieter@autismsociety-nc.org or 828-256-1566.

Get to Know Joanna Bush, ASNC Bookstore Employee

Joanna Bush and Mary Collins

Mary Collins and Joanna Bush

Joanna Bush excels at spelling and math, and her organizational and clerical skills make her a valued employee of the Autism Society of North Carolina Bookstore. But the 31-year-old with autism brings something else to her several part-time jobs: a chance to educate the people around her.

“It creates more acceptance for someone like Joanna, and really anybody else who has autism, when people come across them,” said her mother, Charlene Bush.

Joanna, who was diagnosed with autism at age 7, has memorized some sentences that she speaks aloud and can use small utterances, her mother said. Joanna also communicates through writing. “When she goes into a workplace where people don’t typically see a lot of people with autism, they’re amazed by the fact that she could do what she could do given that she has this pretty big deficit with expressive language and so many issues with sensory management,” her mother said.

For Joanna, the ASNC Bookstore is a perfect place to use her strengths in a calm, quiet setting. “She really enjoys doing it, and she feels very competent. It obviously promotes self-confidence, which is so important,” Charlene said.

Joanna’s aide, Mary Collins, agrees that working in the bookstore gives Joanna “a tremendous feeling of worth.” Mary, a habilitation technician, has worked with Joanna for a little over a year and spends two days a week with her.

Joanna has worked at the bookstore since early 2010, fulfilling many duties: packing orders to be shipped, shelving books in the correct order, pulling materials for events, pricing, shredding, dusting, tidying, and copying. “She knows where everything belongs,” Mary said. “Sometimes if I forget something, she’ll remind me.”

Kate Hall, director of operations for ASNC, said, “The Autism Society of North Carolina Bookstore is unique in that it lives out our mission to provide support and promote opportunities through employing individuals with ASD. Our bookstore staff, like Joanna, gain job skills and independence. Joanna’s contributions are vital to the bookstore, and she is a joy to work with.”

Joanna also uses the media machine for postage and marks on a large map all the locations to which the bookstore has shipped. “She loves doing that map,” Mary said.

At home in Raleigh with her parents, Joanna enjoys doing art, baking treats, and using the computer for games, YouTube, or wikis.

The routine of getting out of the house to work on a regular schedule is beneficial to Joanna, who is calmer because of the consistency, Mary said. Joanna also works in libraries and for Special Olympics. Mary said the pair are working on communication and socialization, making sure to say hello and goodbye to co-workers each day. She would like Joanna to be able to explain what is wrong if she is angry or hurt.

“I’ve got the greatest amount of respect for her,” said Mary, adding that she and Joanna have built a relationship of love and trust. “She’s not only very smart, she’s very loving.”

Mary’s husband recently had a heart attack. When she came back to work with Joanna, Mary did not talk about her husband, but she said Joanna could tell something was wrong. Joanna looked right in her eyes, which she doesn’t usually do, and said “sad” three times. “She’s extra sensitive to my moods. She could really feel that,” Mary said.

“I feel very privileged to work with her.”

 

The ASNC Bookstore employs several adults with Autism Spectrum Disorder; ASNC believes meaningful employment is a key part of a fulfilling life.

Please visit the ASNC Bookstore at www.autismbookstore.com, our newly revamped website. All proceeds from the bookstore are returned to ASNC, where they help fund our mission to improve the lives of individuals with autism and their families by providing support and promoting opportunities.

Autism Insurance Reform Gets Another Chance

insurance image

This week, the NC House passed S493, Health and Safety Regulatory Reform. The House had been debating various regulatory reform bills for the past week, and on Tuesday, they introduced a new version of S493 that included autism insurance reform with very similar bill language to House bill 498, which was passed last year, as well as other health and safety issues.  A new section requires behavioral analysts to be licensed in North Carolina by a new licensing board, which is similar to other health-care professions. Because the state employees’ health plan has voluntarily adopted autism insurance, the section of the original section that covered state employees has been removed in the new bill.

What’s next for autism insurance reform and the regulatory reform bill?

The House stripped a Senate bill that the Senate has already passed and inserted the new health and safety regulatory bill language. Because the Senate has already passed S493, they have several options for how to proceed with the new bill language. They can:

  1. Concur with the House’s version, in which case the bill has passed and can move on to the governor’s desk
  2. Or, they can vote to not concur with the new bill language, and the bill would move to a conference committee. The House and Senate would each need to appoint committee members to work out differences between the two bills before the session ends.

At this time, we do not know what action the Senate will take on the new legislation.

How you can help:

If you have not contacted your NC General Assembly senator recently about autism insurance, now is the time. You can find out who your state senator is here by entering your address in the second map.  We urge you to be respectful in your comments and ask for their support in getting autism insurance coverage passed. (Please note, we appreciate the support of our friends and family in other states, but right now legislators need to hear from people in their own districts.)

Some ideas about what to say in your message:

  1. Tell them a short version of your story of how autism is affecting you, your family, or a person you care for and what insurance coverage would mean for you.
  2. Ask them to support autism insurance reform legislation in the Senate.
  3. Treatments for the symptoms of Autism Spectrum Disorder are effective and result in better quality of life as well as lower future costs.
  4. The cost of autism health benefit coverage is very low; in states that have enacted it, the average cost is .31 cents per member per month.
  5. The bill has no Affordable Care Act impact: There is a carve-out of all ACA plans, which means the ACA is a non-issue, and guidance from the federal government is not necessary.
  6. The bill contains a small-business opt-out, if coverage related to autism causes premium increases of 1% or more.

Background: Autism insurance reform legislation was passed by the NC House last year (H498) but the bill has yet to be taken up by the NC Senate. The bill would ensure that health insurance sold in North Carolina that is regulated by the NC Department of Insurance covers the diagnosis and treatment of Autism Spectrum Disorder. The bill would cover children and young adults from birth through age 23, if they were diagnosed by the age of 8. It would cover screening, diagnosis, and a variety of medically ordered therapeutic and behavioral interventions shown to ameliorate the symptoms of autism, including applied behavioral analysis (ABA). Coverage of behavioral interventions would be capped at $36,000 per year.

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

Keeping Our Cool When Things Get Heated

This article was contributed by Louise Southern of ASNC’s Clinical and Training Department.

I am not the parent of a child with autism, but I am a parent. I know that it can be really hard for me to keep my cool sometimes when my young child starts to fall apart – screaming, dropping to the floor, and noncompliant. But I also know that I will never make the situation better if I escalate right along with him. In the effort to maintain “control” over him and the situation, if I lose control of my emotions, everything really spirals out of control. Some parents of children, teens, and adults with autism encounter very challenging, persistent behaviors that may come in many forms: aggression, property destruction, screaming and crying, noncompliance, refusals, verbal threats, arguing, self-injury, and more. As such episodes occur, here are a few basic guidelines to consider:

Ration your words, or stop talking altogether:

When an individual with autism is highly agitated, they may struggle to effectively process information delivered verbally. Excessive verbal engagement in the midst of escalation is likely to only further escalate and confuse the individual. When we are really upset, we often need to reduce what we say or stop talking altogether. If possible, temporarily disengage to give processing time and physical space until the individual is calmer. Use only those words that are really necessary in the moment.

Rely on visual supports to convey contingencies, expectations:

A visual schedule can also be used during challenging transitions and in the midst of an escalating behavioral episode. If the individual has difficulty transitioning from one activity to the next, wants something right now, or is struggling to persist through an activity, you can use the visual schedule to clarify when he will be able to access something that he wants. When an individual is confused or agitated, he might be able to process visual information more effectively than our verbal information.

In some cases, it may be appropriate to simply use a “first-then” schedule (for example, a schedule that shows “first math homework, then computer”). This visual representation of contingencies can serve to operate as a non-negotiable rule that parents hold their ground on; until the “first” is done to an acceptable degree, the “then” cannot be accessed. The visual reduces the need for continued verbal engagement and minimizes the social attention that the individual might receive from us for the noncompliant behavior.

Depending on the individual’s level of understanding, you might:

  • Point to schedule icons/picture cues that show the contingency (the first ___, then____, sequence)
  • Show the contingency on a tablet app
  • Write down the contingency
  • Text the contingency to his cell phone

Also consider using a visual timer that depicts the passage of time in a way that the individual can understand, such as on a cell phone, kitchen timer, the Time Timer, small hourglass, or tablet application. This supports the individual in waiting for a desired activity such as cooking dinner and/or persisting through a less preferred activity, such as brushing his teeth. The individual’s frustration and anxiety is more likely to escalate further if he does not understand how long something will last.

Visually represent the options:

Forced choice procedures may be useful when the individual wants something that he cannot have in that moment. Clarify for him in concrete (and visual terms whenever possible) what he can have in that moment. The visual choices can operate as a non-negotiable “menu” that parents hold their ground on. As with other visual tools, the menu reduces the need for continued social engagement between parent and child in the midst of escalation. Rather than simply saying “no, you cannot have Wii right now,” you can concretely present alternatives to the individual that he might accept. In this way, the individual may also feel more empowered because he has options. Depending on the individual’s level of understanding, you might present these options:

  • By presenting the actual objects available in that moment, such as a puzzle, book or Play-Doh
  • By pointing to picture/icon cards that show available options
  • By showing available options on a tablet device app
  • By presenting a written list of available options
  • By texting the individual his/her options in that moment

There is a misconception among some that visual supports such as schedules and choice menus are only applicable for young children or individuals who are more severely affected by their autism. Yet in our experience, such visual supports can be highly effective tools for those with high-functioning autism and Asperger’s as well. Remember, the visual support reduces the need for continued verbal escalation, arguing, and negotiations in the midst of an episode.

Direct them to their calm-down space, their calming routine:

If the individual needs time to calm down before he can be successfully engaged, direct him to a comfortable and safe area. Provide materials that are soothing or calming. Some individuals can follow picture-based or written calming plans (e.g., on paper, in a booklet, cell phone, tablet, etc.) that show what to do to calm down. Be aware that the individual must practice and learn these routines when he is calm – as with all of us, it is very difficult to learn when he is already upset.

Positively frame your language:

Try to frame verbal directives so that the individual hears what to do, instead of what not to do in a given situation. For example, say “please sit down” instead of “don’t do that!” Try to respond in a calm, neutral manner as you deliver such directives.

Minimize social attention to the challenging behavior:

What do I mean by social attention? Social attention can be defined as strong emotional responses from you, corrective verbal feedback such as “no sir” “stop” “that’s not nice,” verbal argument, eye contact, gestures or facial expressions from you that signal disapproval, and yelling/screaming. Instead, be calm, be neutral. This may seem counterintuitive – and it is really hard to do at times – but the reason to avoid giving any social attention to the challenging behaviors is because attention to these behaviors might reinforce the behaviors. In other words, the attention that the individual receives for these behaviors may “fuel” the behaviors and increase the likelihood that they occur again in the future under similar circumstances.

It is very important to remember that if the individual is accustomed to getting social attention from you in the midst of challenging behavior, and now you try to stop giving it, the individual may try even harder to get your attention via challenging behaviors. In other words, it could get worse before it gets better. Be prepared to ride this out and know that it really can get better if everyone is consistent in their responses to challenging behavior.

Note that giving no social attention to the challenging behavior is not the same as ignoring the person. Also note that ignoring the challenging behavior is not the same as just letting the behavior continue without any form of intervention.

For example:

  • You can still calmly speak to the individual if appropriate (e.g., to direct them to a calming area or calming routine, to repeat the concrete “first-then”), just don’t comment on or emotionally react to the challenging behavior.
  • You can direct the individual’s attention to the visual schedule, a timer, or a set of visually depicted options. Just don’t comment on or emotionally react to the behavior.
  • You could use counting procedures, such as counting calmly out loud to 10, to help him to calm down and to clarify how much longer he must persist in an activity before it is over. Just don’t comment on or emotionally react to his behavior.
  • You could move items out of the individual’s reach that he might attempt to knock over or destroy.
  • You may need to physically guide the individual away from an area or unsafe activity. Just don’t comment on or emotionally react to the behavior as you do so.
  • You might guide the individual through the activity at hand. Just don’t comment on or emotionally react to the challenging behavior as you do so.
  • If the individual is tantrumming (screaming and crying, dropping to the floor) or persistently arguing with you, you can walk away from him while still monitoring him for safety. You can even put yourself in “time out” for a few minutes so that you can effectively disengage. Wait him out until he is quiet and calm, and then re-engage.

No one is perfect, and it is impossible to be calm and cool all of the time. Know that as parents, you are doing your best. Finally, try to remember that you are not alone and we at ASNC want to help!

Louise Southern M.Ed., BCBA, a member of ASNC’s Clinical and Training Department, can be reached at lsouthern@autismsociety-nc.org or 919-743-0204. ASNC’s Clinical and Training Department staff is composed of PhD and master’s-level licensed psychologists, Board Certified Behavior Analysts, and former special education teachers. We provide individualized intensive consultation using evidence-based practices to support children and adults across the spectrum in home, school, employment, residential, and other community-based contexts. We also deliver workshops to parents and professionals on a wide range of topics including but not limited to, strategies to prevent and respond to challenging behaviors, best practices in early intervention, functional communication training, and enhancing social understanding in individuals with autism.

Spotlight on the Moore County Chapter

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Editor’s note: For those who have a loved one with Autism Spectrum Disorder, a community of support can be a lifeline. For more than 40 years, ASNC Chapters and Support Groups have provided families who face similar challenges an opportunity to encourage one another, share experiences, find information and resources, and have a place where they feel welcomed and understood. These volunteer-led groups also offer education to families, increase autism awareness and understanding, and support and extend ASNC’s mission in their local communities.

Throughout this year, we are highlighting the ways each of our Chapters and Support Groups makes a difference. To find one near you, please click here or contact Marty Kellogg, ASNC State Chapter Coordinator, at 919-865-5088 or mkellogg@autismsociety-nc.org.

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In North Carolina’s Sandhills, Moore County is often prized by the rich and famous for its isolation and beautiful golf courses, as evidenced by last weekend’s U.S. Open.

IMG_0750But for families affected by autism, there is an unpleasant side effect to Moore’s wide-open spaces. “The cities are pretty spread out. It’s difficult to connect with another family,” said Charmain Reid, mom to an 11-year-old son with autism.

That’s where the Moore County Chapter of the Autism Society of North Carolina comes in.

“We connect families,” said Reid, the chapter’s leader. “A lot of families have come to us and been able to build a relationship with another family or just be around families that have some of the same challenges that they do.”

The chapter also helps families overcome some of those challenges by hosting lots of social events. “Without our chapter, there’s no space in public that is designed for us,” Reid said. “We may have a child on the spectrum who is very, very sensitive to noise or very sensitive to light or needs to be up moving around.”

The Moore Chapter frequently sponsors sensory-friendly screenings of recent movies. “We’ve had families tell us that they have never been to a public movie theater together as an entire family before. That touched our hearts so we tried to do that more,” Reid said.

IMG_0728[1] (2)The showings feature reduced prices, no loud previews, dim lighting, and low volume in a local theater. Families also are permitted to bring pillows, blankets, and their own snacks, which is good for those with special diets.

The movies have been really popular, especially with teens and young adults, a population that the chapter is trying to focus on, Reid said.

The chapter also started a support group for teenagers, “an opportunity to socialize and have something to do or have a place that they could come and just be themselves,” Reid said. The group, for those on the spectrum and their siblings, is facilitated by a licensed school counselor during monthly chapter meetings.

In the past, the chapter has held performance nights at a local Mellow Mushroom restaurant. School-age children on the spectrum, family members, and supporters read original poetry or sang as the restaurant donated proceeds from a certain time period. “We had a great time doing that,” Reid said.

IMG_0747[1]This year, the chapter would like to hold a sporting event, such as Hoops 4 Autism. The event would be a fundraiser, but it would also be another chance for families to attend an event all together in public. The chapter would provide a quiet space where families could retreat if the situation became overwhelming.

The chapter’s biggest project, though, is an effort to create a high school class in which students would receive credit to learn how to support their peers on the spectrum or with other developmental disabilities. The class could be taught by retired therapists, teachers, or parents with an education background, said Reid, who herself is a licensed teacher. Students might spend one period per week in class, but for the rest of the course, they would keep logs of times when they supported peers with disabilities, such as teaming with them during another class, sitting with them at lunch, or walking with them between classes.

The chapter is creating a business plan to present to the county school board and hopes to launch the class for the 2015-16 school year.

For more information

The Moore County Chapter meets on the second Thursday of each month from September to May.

To learn more, send an email to autismsocietyofmoore@yahoo.com or search “The Autism Society of NC-Moore County” on Facebook.

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