Our Autism Journey by Debora Thivierge

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Debora Thivierge Our Journey

By Debora Thivierge

When my son Jason was diagnosed with autism at twenty months old, I was lucky enough to discover the book “Let Me Hear Your Voice” by Catherine Maurice. Her story became a beacon of hope for me; a light through the early darkness of Jason’s diagnosis. She inspired me and set me on a path to help my son, myself, my family and others on this autism journey.


Hope was a critical component of my family’s survival. The word hope is defined as “the emotional state which promotes the belief in a positive outcome related to events and circumstances in one’s life.” The opposite of hope is despair. I was determined that despair would not define my emotional state, as it would most certainly lead to detrimental outcomes for Jason.


Not only did Dr. Maurice’s personal story give me the hope I needed, but it also gave me scaffolding upon which to build my son’s treatment plan. After reading the book, I realized that there could and would be significant progress if I utilized applied behavior analysis (ABA) as my main course of treatment.


In 2002, my goal as a parent was to educate myself about autism. The more I learned, the more I recognized the need to educate other parents facing the challenges of autism. I decided to start a foundation that would provide information and resources to families and professionals on Long Island focusing on ABA and its efficacy for children with autism.


I decided to name the foundation ELIJA, an acronym for “Empowering Long Island’s Journey through Autism.” ELIJA’s mission is to bring top experts in the field of autism/applied behavior analysis here to Long Island, to give workshops and presentations where they can share their knowledge of current research and treatments, and to help families and professionals advance their skills in implementing ABA programs.


Having these presenters come from all over the country gives parents, professionals and caregivers direct access to information that they might not otherwise have access to. It also gives them the ability to become fluent in the many different tools and techniques of ABA and how to work with their children on a day-to-day basis. Over the past eleven years, the workshops have educated, inspired and instilled hope in thousands of people, including myself. It was and still is so important to me to help parents understand that their role as educator is one of the most crucial components in research outcome data.


I quickly discovered that parents were desperate for information and this kind of support. Having the ELIJA Foundation as a resource gave them an opportunity they wouldn’t have had otherwise – to obtain information directly from autism professionals actively involved in research and education.


The workshops gave parents and professionals the opportunity to network with each other informally. The setting was comfortable and inviting. We would provide lunch, so that participants could focus on meeting, talking, sharing information and experiences and, most importantly, creating lasting connections.


Parents of children with autism often feel extremely isolated, from family and friends who may not understand autism and the challenges they are facing, and from the community at large. ELIJA’s workshops gave opportunities for families to feel connected, to feel not so alone and to find shared interests with other families. When professionals, families and educators feel connected, they tend to be more effective in their implementation of plans and advocacy for the children they work with. These connections bring some measure of relief to parents, who are often exhausted due to lack of feedback and support in the community and in educational settings.


In retrospect, I look back and wonder where Jason would be today, had I not done all this intensive instructional training, and kept on top of his curriculum, especially the goals and the skills that we were teaching him. I knew his long-term outcome would be affected by our choices of what to teach him, and what not to teach him. These choices were sometimes challenging, but I was able to look at the data tables to determine that his biggest deficit was language.


I learned to change my expectations, and give and take in terms of Jason’s progress. I accepted the fact that he may never write neatly or clearly, or be able to complete a 500 piece puzzle or climb a jungle gym or run a marathon. That’s ok. Twelve years after Jason’s diagnosis, he still has autism, but I can’t even imagine where he would be today without our hope, determination and the intensive interventions we have painstakingly implemented. Our family’s journey through autism continues.


About the Author: Debora Thivierge, BCaBA, received her BA in Sociology from Hofstra University and is a Board Certified Assistant Behavior Analyst. She serves as the Executive Director and Founder of The ELIJA School and Founder of The ELIJA Foundation. Debora has volunteered her time to numerous Autism groups such as Nassau County’s Department of Health Early Intervention Coordinating Council, New York State Association of Behavior Analysis, Nassau County Autism Coalition run by the County Executive and currently serves as a board member of The Behavior Analyst Certification Board® (BACB®). For the past 13 years, she has been providing advocacy to families and conducted training workshops to promote evidence based instruction for families and educators who have been touched by Autism. She has a 15 year old son with Autism.


11 Laurel Lane

Levittown NY 11756

Tel. 516-216-5270





The Importance of Assessment in Treatment Planning by Mark Sundberg

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The Importance of Assessment in Treatment Planning.

By Mark Sundberg, Ph.D.

Author of Verbal Behavior Milestones Assessment and Placement Program (VB-MAPP).

Every child with autism or other developmental disabilities presents unique needs and challenges. An important step in developing a treatment plan and curriculum for a child is a thorough assessment of his or her abilities, as well as the barriers that might be affecting learning. To establish a starting point in a language intervention program information should be obtained as to what the child can do consistently and reliably, and how his or her skills compare to those of typically developing children. Can the child repeat words on command (e.g., say “Ball”) and imitate motor actions when asked to do so (e.g., claps when an adult claps)? Does the child use specific words to ask for items and actions when he or she wants them (e.g., “Drink”)? Does the child use words to name items he or she sees when asked to do so (e.g., When asked “What is that?” the child says, “Car”). Finally, can the child select a specific item from an array of items when asked to do so (e.g., “Find the dog”). These five early language skills, along with play skills, social skills, and matching-to-sample serve as the basis for most ABA (Applied Behavior Analysis) early intervention programs.


While it is critical to assess the child’s skill strengths and weaknesses, it is also important to identify problem behaviors or other obstacles that may be in the way of progress. Thus, another step in assessment is to identify the barriers that the child may present (e.g., self-stimulation, rote responding, delayed echolalia, sensory defensiveness). For example, if a child tantrums in order to obtain desired items, actions, or attention, a program to reduce tantrums and teach more acceptable forms of communication (i.e., mands) is necessary. In addition, some children may become stuck or fail to use the skills they have learned. If the child initially made progress, but then seems to have plateaued it is important to look beyond a basic assessment of skills and be the “CSI” for the child. While behavior problems such as tantrums may be obvious, other less obvious behaviors may be in the way of effective teaching. A few questions that should be asked include: Does the child continue to need excessive prompting to complete an activity or skill? Does the child wait for reinforcement until moving on to the next step? Does the child use the skills they have learned in a natural and functional way?


Once the child’s skills and barriers are identified, intervention priorities can be established. In cases where the child exhibits problem behaviors such as tantrums, a functional assessment and curriculum to teach replacement behaviors should be a priority. If the child does not use words to request things he wants, then a priority will be to teach the child that particular language skill. In addition, some children with articulation disorders may benefit from the use of augmentative communication such as sign language or PECS. Thus, a well-planned intervention program will contain a combination of procedures designed to increase desired skills and behaviors, as well as procedures to reduce barriers that impede learning, language, and social skills.


Children and adults with more advanced language and social skills can also benefit from a comprehensive assessment. These skills become increasingly complicated as they learn how to master skills such as initiating verbal interactions and engaging in conversations in less structured settings. An assessment can help to establish priorities and designing a long-term intervention program. Behavior analysis (ABA) in general, and a behavioral analysis of language provide valuable tools for establishing and guiding intervention programs for children with autism.

The article The Importance of Assessment in Treatment Planning was written by Mark Sundberg.

Mark L. Sundberg, Ph.D., BCBA-D received his doctorate degree in Applied Behavior Analysis from Western Michigan University (1980), under the direction of Dr. Jack Michael. He is the author of the Verbal Behavior Milestones Assessment and Placement Program (VB-MAPP), and co-author of the original ABLLS and the book Teaching Language to Children with Autism or Other Developmental Disabilities. He has published over 50 professional papers and 4 book chapters. He is the founder and past editor of the journal The Analysis of Verbal Behavior, a twice past-president of The Northern California Association for Behavior Analysis, a past-chair of the Publication Board of ABAI, and has served on the Board of Directors of the B. F. Skinner Foundation. Dr. Sundberg has given hundreds of conference presentations and workshops nationally and internationally, and taught 80 college and university courses on behavior analysis, verbal behavior, sign language, and child development. He is a licensed psychologist with over 40 years of clinical experience who consults for public and private schools that serve children with autism. His awards include the 2001 “Distinguished Psychology Department Alumnus Award” from Western Michigan University, and the 2013 “Jack Michael Outstanding Contributions in Verbal Behavior Award” from ABAI’s Verbal Behavior Special Interest Group.


Looking at Autism: ABA and a Behavior Analysis of Sensory Needs

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Carl Sundberg

By Carl Sundberg, Ph.D., BCBA-D

Executive Director/President, Behavior Analysis Center for Autism (BACA)

On numerous occasions, I have been asked to consult for a team or review a program developed to work with children who have autism or other developmental disabilities. During these consults, I have heard the following statements: “We don’t do ABA” or “We don’t believe in ABA.”

At this point I realize I have some educating to do, but must tread carefully as I am in the midst of “nonbelievers.” I must avoid the temptation to spew out sarcastic remarks, such as “You mean you don’t believe in behavior analysis?” or “You don’t believe there is a cause for all behaviors and that it’s helpful to have an understanding of variables that lead to behavior?” I think to myself that it’s not a matter of whether or not you believe in behavior analysis. The principles that govern behavior (e.g., reinforcement, punishment, extinction, shaping, etc.) are operating on all of us all of the time. They are ubiquitous. Don’t you want to understand the relationship between these events and the behavior of your child (or yourself for that matter)? Don’t you want to try to understand the variables that are at play when your child or student does not talk, learn to identify items or answer even the simplest questions?

I don’t say anything because I know this is simply a misunderstanding of what ABA is. ABA is simply an acronym for Applied Behavior Analysis. Behavior analysis is the science of human behavior. B.F. Skinner is the father of behavior analysis. Skinner demonstrated that our physical and social environment primarily determines what we learn. Certainly physiology and genetics play a roll as well by establishing potential or setting limits. For example, if you are only 5’2″, you may never be able to dunk a basketball, regardless of your training. However, you could very well become an expert gymnast. Of course, whether or not you become a good gymnast will be determined mainly by environmental factors.

The confusion often stems from the misnomer that ABA is synonymous with discrete trail teaching, sitting your student at a table for 40 hours per week conducting drills that will turn him or her into a robot. Now, I do think that is possible and I do believe that is done (I have seen it), but that is not what I would call ABA.

The actual case is that the teaching we do is based on the principles of applied behavior analysis. If you really understand behavior analysis, then you can understand the real causes of human behavior. If you apply that knowledge to an understanding of children and young adults with autism who cannot communicate, and you use the tools developed through behavior analysis (referred to as behavior modification), then you can have a lot of success teaching children to communicate.

So, when I come across the statement “We don’t believe in ABA,” I may simply ask these questions:

  • Do you think it is important to conduct a thorough analysis of a student’s language and learning deficits (VB-MAPP vs. standard age equivalent score)?
  • Do you think it is important to conduct a functional analysis of problem behaviors?
  • Do you think it is important to break down skills into manageable units, to teach them and to teach the foundation or prerequisite skills?
  • Do you think it is important to tap into the student’s motivation and use whatever it takes to make learning interesting and fun for the student?
  • Do you think it is critical that much direct teaching is necessary if the student does not learn in group settings?
  • Do you think it is important to provide many meaningful learning opportunities throughout the day? That is, would you agree that 2,000 learning opportunities per day are better than 150?
  • Do you think it is important to teach in ways that promote generalization and avoid rote responding?
  • Do you agree that procedures such as reinforcement, shaping, chaining, prompting and fading are important?
  • Do you agree that the success of the child is in large part directly related to the skills of the person or people who are down there in the trenches with the student?

Most people who say they don’t do ABA will agree with those statements. However, I also find it troubling that many people who say they do ABA don’t do anything like those statements (which, of course is most likely what was observed by the people who say they don’t believe in ABA).

Only recently has behavior analysis been so closely connected with autism. I remember a bumper sticker from the 1970s that read “Better Living through Behaviorism.” Back in those days, autism was diagnosed at about 1 per 10,000 children. But in 2012, the autism rates have risen. About one in 88 children has been identified with an autism spectrum disorder (ASD), according to estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network. That makes behavior analysis all the more important today.

Behavior analysts are believed by some to be “anti-sensory” — opposed to sensory diets, massages, deep pressure, jumping on a trampoline, etc. when working with those who have autism or related disorders. However, this is not necessarily true, and I would like to set the record straight. Each of us, children in particular, is highly motivated by sensory input, sensory variation, movement and pressure. Ever catch yourself tapping your pencil, twiddling your thumbs, biting your nails or popping bubble wrap (a personal favorite of mine)? If so, would you say you have “sensory needs” or sensory issues? Would you throw yourself on the floor, kicking and screaming, if you were told by your dentist you don’t need X-rays and couldn’t wear the weighted lead vest? Or if Kroger was out of pinwheel cookies? I hope not.

However, it’s not unusual to see a person with autism engage in negative behaviors that cease when a vest is applied or the cookie is delivered. In both cases, there is something lacking from the person’s immediate situation. A good tantrum is likely to result in the receipt of these items. Also, in both cases the behavior is likely to decrease once the vest or cookie is received. This is evidence these items are functioning as reinforcers and the behavior is functioning as a mand (request). Why is it that in the first case (throwing a tantrum to get the vest), it’s often said it’s because the child has “sensory needs?” However, in the second case (throwing a tantrum for the cookie), it is rarely said that the child has “food needs.” Activities stimulating the senses can serve multiple behavioral functions, such as reinforcement and as a motivating operation (MO). Jumping on a trampoline is likely to be repeated because of its reinforcing effects — it is fun. This leads to the question, “Do I jump on the trampoline because I have to jump on the trampoline, or because it’s fun?” Either way, I am going to do whatever I can to get the opportunity to jump on the trampoline (thus, the reinforcing value). Again, the behaviors one engages in depend on history of reinforcement and punishment, verbal repertoire, social contingencies (e.g., are they effective?) and perhaps the level of deprivation or strength of the MO. That is, if I had been jumping on the trampoline for extended periods of time, I may be less motivated to continue jumping and less likely to engage in behaviors that will allow me to jump.

I agree there are children/people with autism who have extreme reactions to sensory input (e.g., loud noises, bright lights) and there are those who are extra sensitive to textures or certain clothing (e.g., the tag in the back of a shirt). These children/adults learn to engage in behaviors that reduce the aversive nature of such stimulation. But there are also people without autism who are sensitive to certain stimuli.

There are some who experience extreme discomfort when exposed to situations that would be considered typical to most of us. These people (without autism) will engage in behaviors that relieve the anxiety, such as escape behaviors (leaving the situation), avoidance behaviors (avoiding the situation entirely) or engaging in some incompatible behaviors (practicing relaxation techniques). In all cases, a sophisticated repertoire is typically involved. Rarely will an adult (who does not have autism) run and scream from a room or become aggressive when confronted with an uncomfortable situation. Most of us have a sophisticated verbal repertoire allowing us to compensate in a more socially accepted way. Many people with autism do not have the repertoires to engage in the socially-accepted methods that relieve the anxiety or discomfort. However, many other non-socially accepted behaviors have been shaped over the years that are ultimately effective in removing the aversive stimulation. If I am in a room where the music is too loud, I will leave or ask for it to be turned down. If those are not possible, I may have to tolerate the situation. I have learned that there are socially negative consequences if I were to throw a tantrum. But what if:

  1. I did not have the language to ask for the music to be turned down?
  2. I did not know that leaving was an option, or did not know how to ask, or was forced to stay?
  3. I was not affected by the same social consequences as most people? That is, I don’t care what I look like or if I get invited back to this party. As a matter of fact, I have no idea how a tantrum here is going to affect my social standing among my peers in the future (but that is a moot point because I don’t care).

If all that were true, I would likely throw a tantrum if that would get the music turned off or get me removed from the room.

Now, suppose I do have those skills, and I can always find a way to get out of situations that cause stress or sensory overload; or I tough it out because of the social contingencies that have been shaped up over my lifetime. Chances are, no one would suggest I had sensory issues and put me on a sensory diet or prescribe sensory integration therapy. However, a person with autism who may have the same level of discomfort who escapes the situation in the only way he or she knows how is often said to have sensory issues.

I am not suggesting that people with autism don’t have sensory issues. My point is that perhaps there are other explanations in many of the cases. I believe these other possibilities need to be carefully analyzed. I often wonder if some people engage in tantrum-type behavior because the situation is unbearable or the tantrum is a surefire solution. Social contingencies are different. Kids with autism who do not have social contingencies operate solely for the here and now.

I have worked and studied in the field of ABA for thirty years now, and the bulk of my work has been helping children with autism and related developmental disorders.

When the Behavior Analysis Center for Autism (BACA) was founded in 2009, our mission was to create an optimal learning environment for our clients and to support our staff with an intensive training program and ongoing education to ensure that we were delivering the highest level of service to our clients. We now have four BACA centers throughout Indiana, in Fishers, Zionsville, and Elkhart.

We have assembled an amazing clinical team, including PhD’s from around the country to offer staff training seminars, research analysis and to refine our curriculum. The effort to make BACA the best it can be requires daily attention, and we are always looking for ways to improve.

At BACA, we work to provide excellence in services to a wide range of children and young adults with ASD through our facilities in a variety of settings as well as provide services in a positive and caring environment. Our goal is to provide these therapy services for children and young adults to enhance the quality of their lives.

The Behavior Analysis Center for Autism (BACA) provides a continuum of applied behavior analysis (ABA) services to children and young adults with autism in four different locations, with two centers in Fishers and new centers in Zionsville and Elkhart, Ind. Treatment is based on current research findings from the most experienced scholars in the field of behavior analysis in the areas of: teaching language, social, self-help, academic and employment skills.

Leading all the centers as founder and executive director is Carl Sundberg, Ph.D., BCBA-D, one of the first experts on teaching children with developmental delays in central Indiana. He received his doctorate degree in Applied Behavior Analysis from Western Michigan University (WMU). While a graduate student, he taught behavior analysis at WMU for seven years.


Dr. Sundberg has published in The Analysis of Verbal Behavior, and A Collection of Reprints on Verbal Behavior. He has more than 25 years of experience in the field of mental health and has specialized in early intervention with children with autism and other developmental disabilities for the last 15 years. Since 1996, Dr. Sundberg has assessed and worked with more than 400 children and adolescents with autism spectrum disorders and more than 200 families.

BACA currently has five Board Certified Behavior Analysts-Doctoral, 16 Board Certified Behavior Analysts (BCBA), four Board Certified Associate Behavior Analysts (BCaBA), an onsite speech pathologist and an occupational therapist. All therapists have a minimum four-year college education and have gone through rigorous training.

BACA’s implementation strategy includes creating an enriched learning environment at each facility through the utilization of B. F. Skinner’s analysis of Verbal Behavior within the framework of Applied Behavior Analysis (ABA) to teach children with language and social deficits. BACA also provides natural environment training (NET) in the community and home and coordinates with families and outside professionals to create a cohesive team to benefit clients.

By ensuring the staff receives and applies intensive, ongoing training, BACA provides the most efficacious ABA services to children and young adults with autism to improve their quality of life.


If you are are newly qualified BCBA you may find this Q&A useful by Carl Sundberg: https://www.asatonline.org/research-treatment/clinical-corner/bcba/