Special Needs Registries to Inform First Responders

By: Cassie Hauschildt

When a child is diagnosed with autism, there are a number of resources, therapies, and programs recommended  to parents. They are told all about ABA, ST, OT, PT, and FT, among others, receiving an alphabet soup of therapies. We explain the importance of early intervention. For parents of older children or teens, they learn how to navigate the school system with BIPs, IEPs, ARDs, and more. They begin to understand the behaviors of their children in a new light, and may even gain a few new fears from behaviors of other children. They learn the proper term for eloping and steps to take to help prevent sensory overload. And while many behaviors are explained, it also becomes obvious that there is not an immediate fix for many of them.

One service that professionals may not tell parents  about at the time of diagnosis is their local police department’s registry program for individuals on the Autism Spectrum (along with other disorders or special needs). However, if this is a service is available to them, it could help alleviate many of the concerns that come along with an autism diagnosis. This free and essential service is often not openly advertised to the public, but rather, lives on a corner of their local webpage. Some don’t even have an obvious link on the homepage, requiring citizens to use the search function in order to get their child included on the list. This service can have a variety of names, including but not limited to: “Safe Return Program,” “[Autism and] Special Needs Registry,” “C.A.R.E.S,” and “Voluntary Registry Program for Vulnerable Populations.”

Registering your ASD Child for this program will create a note associated with your home address in the local police’s internal system. This can help participants in multiple ways. First, if there is ever an officer dispatched to your home, they will be alerted that an ASD individual lives in the home and be prepared to accommodate that person’s needs. Additionally, if a child was to elope, many programs have the option to upload a recent photo. This will make it easier for law enforcement to distribute the child’s picture quickly. For some cities, , this information could also be shared with the any firefighters or paramedics sent to the home by the dispatch team.

The method for finding if your local police department offers this program will differ depending on your city. The best start is to try searching “[CITY NAME] Special Needs Registry” on a search engine such as Google. If this doesn’t work, you may have to do some detective work on the local police website. When trying to find this program locally, I had to find the “Community Programs” tab on the menu bar of the police website.

Each program will require different information to register. At a base, caregivers should expect to provide name, address, diagnosis, and physical description of the registrant as well as the contact information for all caregivers. If the registrant is able to drive, information about their primary vehicle will also be required. Any additional required information will vary depending on the local program. Some require a doctor’s letter proving diagnosis, others ask for a recent picture, and other ask for communication methods and support items.

If you find that your local police department doesn’t have a program, consider approaching them about implementing one. With the updated CDC estimate of 1 in 44 children getting diagnosed with autism, it is almost guaranteed that this program will be useful to more than just you. Additionally, these programs can be utilized for individuals with Alzheimer’s, Dementia, Down Syndrome, and many other special needs. BCBAs and Educators are the perfect individuals to partner with  police on  program parameters. Additionally, it’s a great opportunity to broach your local police department  about training for interacting with ASD individuals.

Cassie Hauschildt received her autism diagnosis at 32 years of age and is the mother of an ASD son, who was diagnosed at 20 months old. Since his diagnosis, she has become an advocate for ASD children. She dedicates her time to mentoring parents of ASD kids through the tough first few months post-diagnosis. She also is trying to get rid of the negativity surrounding ABA therapy. She does this through humor, while using real talk, on her TikTok @AnotherAutismMom. She also runs the “Dino and Nuggets Corner” Facebook Group.

By: Nicole Gorden, M.S., BCBA, LBA 

This blog post is part 2 of 2. Read part 1 HERE


Autism spectrum disorder occurs in individuals from many different cultures and backgrounds. Therefore, cultural competency and sensitivity is imperative for effective delivery of services. To work with autistic learners, is to respect that they are the product of many environments that have shaped them and will continue to shape them throughout their life.

As stated in the most updated ethical code from the BACB, behavior analysts are responsible for incorporating and addressing diversity in practice. For example, the BACB ethical code states that behavior analysts must practice within our scope of competence, maintain competence including cultural responsiveness and diversity. Specifically, providers must “evaluate their own biases and ability to address the needs of individuals with diverse needs/backgrounds” (Ethical Code, 2022, 1.07).

However, what are the practical implementations to culturally sensitive treatment? What does this actually look like in practice? As providers, we are obligated to offer exceptional service delivery with individualized treatment goals. Considering our learner’s cultural background and the impact of their community’s beliefs and attitudes is essential to effective treatment. The following will provide guidance on how providers can apply cultural sensitivity to their clinical decisions in treatment.

Priorities in Treatment Goals

Overlooking the cultural impact can also create conflict and disparity within the stakeholders’ involvement and commitment to treatment. In contrast, “when these values and expectations align with those of the family receiving the intervention, positive outcomes are likely, including high levels of participation and response to treatment” (Dubay, Watson, & Zhang, 2018). Thus, we must also consider how we prioritize goals for culturally sensitive treatment.

For instance, I recently worked on a sleep intervention to desensitize my client to sleeping in his own bed. When discussing the intervention, and more importantly, when to introduce the treatment goal, the cultural sleeping norms had a significant impact. In some urban and minority cultures, co-sleeping is common. Yet, if a provider may think it is significant for the client to start sleeping in their own bed by the age of six, but it is common in the culture to continue co-sleeping even until the child is ten, culturally sensitive conversations can play an important role.

In another example, Filipino cultures find it respectful for younger family members to “bless” elder members by bowing towards the hand of the elder family member and placing their forehead on their hand. Thus, although the provider may find it significant for the client to learn to wave to greet others, by prioritizing cultural norms, it may have a greater influence on the client receiving natural reinforcers by working on blessing their family members, first.

The contradiction between parents following therapy targets that will be supported by their community compared to the skills that might benefit their child in the long term may prove to be challenging and demanding on the family (Dubay, Watson, & Zhang, 2018). Thus, culturally sensitive treatment is prioritizing treatment goals with the best outcome and secures family commitment.

Interdisciplinary Collaboration

By creating culturally sensitive treatments, providers will build better relationships with stakeholders and in turn, reduce the social stress that may come from raising and teaching an autistic child within various cultures. This idea does not only apply to parents, but even extends to the interdisciplinary team that could be influenced by the learner’s culture.

Within Russian communities, it is common to eat soup for lunch. When I provided services in a primarily Russian daycare, I had to consider my client’s aversion to eating these traditional meals as well as the importance of this target behavior to the daycare providers. Rather than dismiss this potential goal, despite my own perspective on the client’s needs, I modified my treatment goals to effectively collaborate with the daycare providers. By understanding the cultural impact and importance of certain behaviors to any stakeholder, the provider can often address unmet needs, gain support for treatment, and keep open communication if other issues arise (Fong et. al, 2017). We must be culturally sensitive towards the beliefs and attitudes that are different than those in the US, and not assume that the learner’s culture does not affect how they or their community respond to treatment.

Educate Ourselves. Stay Cultured. It is not required to culturally match your clients to provide adequate care and treatment. However, providers should strive to acquire knowledge and skills related to cultural responsiveness and diversity. Although we may be the experts in our particular discipline, remember that the parents are the experts on your learner. Culturally sensitive providers should strive to learn about the cultural norms of their diverse clientele. Constant dialogue, keeping an open perspective, and asking questions about cultural norms can make all the difference.


About the Author: 

Nicole Gorden, M.S., BCBA, LBA has over 14 years of experience implementing Applied Behavior Analysis principles with the Autism Population. She currently works for Comprehensive Behavior Supports in Brooklyn, NY.


References:

Behavior Analyst Certification Board. (2020). Ethics code for behavior analysts. Littleton, CO: Author.

DuBay, M., Watson, L. R., & Zhang, W. (2018). In Search of Culturally Appropriate Autism Interventions: Perspectives of Latino Caregivers. Journal of autism and developmental disorders48(5), 1623–1639.

Fong, E. H., Catagnus, R. M., Brodhead, M. T., Quigley, S., & Field, S. (2016). Developing the Cultural Awareness Skills of Behavior Analysts. Behavior analysis in practice9(1), 84–94.

Fong, E. H., Ficklin, S., & Lee, H. Y. (2017). Increasing cultural understanding and diversity in applied behavior analysis. Behavior Analysis: Research and Practice, 17(2), 103-113.

Patton, S. (2017, April). Corporal punishment in black communities: Not an intrinsic cultural tradition but racial trauma. CYF News. http://www.apa.org/pi/families/resources/newsletter/2017/04/racial-trauma

Working on the Front Lines of Autism Care

By: Stephanie Tafone, M.A., P.D., Behavior Intervention Specialist at Eden II Programs 

Working on the front lines of Autism care in a residential facility is both rewarding and, at times, challenging. Although our residents depend on us in many ways to teach them how to complete day-to-day tasks, it is important for all staff to recognize and respect that our residents each have their own preferences and interests. Therefore, we always strive to let our residents make as many choices as possible (provided they are healthy choices that do not cause harm to anyone). Just because we as staff might complete a particular task a certain way does not mean it is the “right” or only way to do so. Recognizing and respecting residents’ choices can help avoid negative behaviors or frustration for our residents. Our goal is always to teach and foster independence and self-direction. 

It is always important to build good rapport with our residents so we are in tune with their wants and needs, while also enabling them to better trust us, work with us, and learn from us. Unfortunately, with current staffing crises and funding cuts in residential care settings, one challenge we face is securing long-term, seasoned staff. This type of setting often suffers from a high turnover rate, which this is a matter that needs more global attention, as hardworking, dedicated, and experienced/trained staff are crucial for our population. 

One of the biggest considerations we have on a daily basis, particularly during the global COVID-19 pandemic, is finding creative and entertaining recreational and leisure activities to keep our residents happy and actively engaged. Anyone can become restless and bored with nothing to do, and those with Autism are no different, which is why active engagement is one of our top priorities in a group home setting. When selecting activities, we strive to ensure that each resident’s preferences are considered and incorporated. This includes a combination of both community outings and in-house events/activities. Going into the community on outings can be challenging at times when unpredictable factors (e.g. noise, crowds, etc.) may trigger negative behaviors. However, we do our best to avoid triggering situations by researching and/or visiting the activity or location before our residents experience it in order to help determine if there are any barriers that will prevent it from being an enjoyable and successful outing for all. We also do our best to go prepared on each community outing with preferred items that can be used as a source of redirection and comfort if needed. For example, headphones to drown out noise if it gets too noisy, as well as preferred snacks or drinks if our residents get hungry or thirsty. In the residence, we also strive to think of creative leisure activities, such as dance or karaoke parties, Bingo nights, movie nights, baking, and arts and crafts. Having an enthusiastic and supportive approach, as well as using preferred reinforcers, helps to engage our residents in these activities and increase their interest level. 

In addition to recreational and leisure activities for entertainment and socialization, day-to-day life in the residence is also a learning experience for our residents, as they work on a variety of individualized goals with their assigned staff. Examples of goals may include activities such as participating in a consistent exercise regimen, learning how to independently cook rice or make tea, learning how to independently count money and make purchases, and learning how to independently vacuum or clean one’s room. The selection of a participant’s goals is a collaborative process that involves input from parents/caregivers, input from the participant(s) if possible, and input from the management team at the residence. We strive to ensure that selected goals not only address a skill deficit, but are also aligned with the participant’s interests and will help the participant become more independent in daily living skills. Similarly, participants learn increased independence by participating in various chores around the house, such as setting the table for lunch and dinner, loading and emptying the dishwasher, and doing one’s laundry. Teaching many of these goals and chores can be accomplished through the use of a visual task analysis that breaks the task down into smaller components (i.e. individual steps), which are each depicted in visual images. Visuals are a very helpful teaching technique for those with Autism, who often struggle significantly with understanding verbal language and oral directions. It is also helpful for learning, especially in the initial stages, to use a preferred reinforcer to reward correct completion of steps. In the beginning of learning a new goal or chore, one step may need to be taught for a number of consecutive days until it is mastered and the next step can be taught. 

Overall, working in a residential setting has been a great learning experience and we know that our work has had, and continues to have, a significant influence on our residents’ lives, which is very rewarding for all staff. 

About the Author: 

Stephanie Tafone, M.A., P.D. earned her B.A. in Psychology from St. John’s University before going on to earn her M.A. and Professional Diploma in School Psychology from Kean University. She is currently in the process of completing the requirements to obtain an Advanced Certificate in Applied Behavior Analysis as she pursues national certification. For the past ten years, she has been working with both children and adults with disabilities. She currently works as a behavior intervention specialist at a residential facility serving adults who have been diagnosed with Autism Spectrum Disorder. She also works as a school psychologist serving children with various diagnoses and disabilities, as well as an adjunct professor for courses pertaining to Applied Behavior Analysis, Autism, and Intellectual Disability. 

Raising Expectations for the Treatment of Children With ASD

On November 6th 2021 in NYC, Dr. Ronald Leaf will describe the Autism Partnership Method (APM) in a free seminar at St Monica’s Church from 2-4pm. Free CEUs will be available! 

Children with Autism Spectrum Disorder (ASD) have amazing potential that can and should result in a high quality of life. However, this is highly dependent on the treatment received. Unfortunately, the current standard of care—Conventional Applied Behavior Analysis (ABA)—is quite rigid and formulaic in its approach, yielding treatment that is not tailored to the unique needs of the children and their families. Typically, treatment only addresses limited areas such as behavior and communication deficits. Although children may receive some benefits from Conventional, protocol-based ABA, the results usually do not endure over time, nor do they translate to more natural settings that are essential for self-sufficient adulthood.

Autism Partnership Method is an extremely individualized approach to ASD that yields lifelong benefits.  Rather than follow a “one size fits all” treatment recipe. Progressive ABA training is not time based, but performance based — no less rigorous or precise than the training regimens of surgeons or civil engineers. Quality treatment focuses on the entire child, thereby addressing the child’s foundational behaviors, including communication, socialization, play, and independent living skills — as opposed to addressing a more limited set of behavioral or communication needs. Progressive ABA treatment is designed so that children can succeed in mainstream settings, such as regular education classes, and can thrive in extracurricular activities. Children who receive progressive treatment, have been shown to make the progress their parents dream of, such as playing with their sibling and developing meaningful friendships.

In 2011, the journal Education and Treatment of Children published A Program Description of a Community-Based Intensive Behavioral Intervention for Individuals with Autism Spectrum Disorder. This study evaluated the progress of 64 children at Autism Partnership agencies in Seal Beach, California; Hong Kong; Leeds, United Kingdom; and Melbourne, Australia. The results found that 70.3% of children achieved best outcomes when individualized ABA services were provided early (i.e., before the age of 9), and intensively (i.e., 10–40 hours a week), by quality therapists.

At Autism Partnership we are deeply concerned about the expectations regarding the outcomes for children diagnosed with ASD!  Simply put, we feel that the expectations are too low. Children with ASD have a far more favorable prognosis than believed achievable decades ago, yet there still seems to be a lack of understanding regarding children’s’ actual potential. Children with ASD have amazing potential! The majority of children can become conversational, achieve success in school, develop meaningful friendships and most importantly, experience a high quality of life!  However, achieving this requires high quality intervention with highly trained staff. 

Register for the Autism Partnership seminar here! 

About The Author

Ronald Leaf, Ph.D. is a licensed psychologist who began his career working with Ivar Lovaas in 1973 while receiving his undergraduate degree at UCLA.  Subsequently he received his doctorate under the direction of Dr. Lovaas.  During his years at UCLA he served as Clinic Supervisor, Research Psychologist, Interim Director of the Autism Project and Lecturer.  He was extensively involved in several research investigations, contributed to the Me Book and is a co-author of the Me Book Videotapes, a series of instructional tapes for teaching autistic children.  Dr. Leaf has consulted to families, schools, day programs and residential facilities on a national and international basis.  Ron is a Director of Autism Partnership.  Dr. Leaf has published extensively in research journals.  Dr. Leaf is the co-author of: A Work in ProgressTime for SchoolIt Has to Be Said!Crafting ConnectionsA Work in Progress Companion Series and Clinical Judgement.

In The Event Of Crisis

When it comes to the treatment or reduction of challenging, disruptive, dangerous problem behaviors, regardless of the setting or populations served, this will often be referred to as “Crisis Intervention”.

This concept is far broader than ABA, as many institutions and facilities will create, monitor, and implement crisis interventions whether anyone on site has received ABA training, credentialing, or licensure, or not (examples: police, schools, daycares, residential settings, prisons, etc.).

Being such a broad topic, that can look about 10,000 different ways depending on the setting and availability of highly trained specialists, it should come as no surprise that crisis behavior scenarios frequently result in injury or even death. If you do some online searches for news stories related to seclusion and restraint, regardless of the setting, you will see what I mean.

This issue is also larger than disability.

Yes, most of the horror stories we see on the news where someone was seriously injured during a restraint DO involve people with disabilities (whether it was known at the time, or not). But in the absence of disability or mental health issues, crisis management can still lead to serious injury or death. That could be for the person(s) responding to the crisis, or to the person(s) having the crisis.

This is a very weighty and complex topic, and I can’t possibly cover everything anyone should know about crisis intervention. However, due to the seriousness of crisis scenarios and the increased risk of harm (again, for the person intervening, the person or having a crisis, or even both of those people), I very much want to share some resources and information about managing behavioral crises.

First, some terms. Here is my favorite definition of a crisis:

A time of intense difficulty, trouble, or danger; a time when a difficult or important decision must be made.

During a behavioral crisis, the individual is having intense difficulty or trouble. They are having a hard time (not giving you a hard time). Decisions must be made, not just regarding what to do RIGHT NOW, but in the future, in case this happens again. Which, without the proper supports in place, the crisis event is highly likely to happen again.

Viewing a crisis through this lens takes the responsibility off of the individual having the crisis, and onto the supports in place (or lack thereof). When a crisis event occurs, ask yourself these questions:

     1. Does this individual know how to safely de-escalate during a crisis event?

     2. If yes, then why are they not using that tool?

Truly individualized and effective de-escalation tools are best understood as the means by which an individual in a crisis state can identify they are approaching a crisis state, select a de-escalation method, implement the method, and lastly evaluate how well the method worked once they are calm again.

Depending on the setting, availability of support help, and the understanding of de-escalation (or lack thereof), this “returning to neutral” process can take minutes, hours, days, or may not occur at all. It may involve a team of people, a caregiver or support person, or happen independently. When it doesn’t occur at all, that typically results in emergency room visits or admittance into an inpatient facility.

I do not know your work setting, the populations you serve, or your job title, but if you are reading this post I have to assume you have either experienced a crisis event with a client/student/etc. or want to be equipped if it should happen.

Right here I have to point out a very common myth, that can be quite dangerous when people believe it: In the field of ABA, clients who exhibit (or have a history of exhibiting) highly violent or dangerous problem behaviors may be classified as exhibiting “severe behavior”. It is a myth that only severe behavior clients can have crisis events. That is not true at all. Clients with non-violent or less disruptive problem behaviors, under the right set of combined circumstances, could have a behavioral crisis. For example, what if their home routine is significantly disrupted, they are ill, dealing with a change of medication, and also recently started puberty? These setting events when combined, could trigger a crisis event. For this reason, it is important for professionals and practitioners to be properly trained and equipped for crisis conditions, far before they are needed.

Now I want to speak specifically to ABA implementers (RBT’s, paraprofessionals, etc.) who work directly with clients: If you are working with clients where you are regularly responding to crisis events or working with clients with a known history of crisis events, you should be following the policies of the physical management training you received. If you have not received any physical management training, then you should not be working with those clients. It is dangerous for you, and dangerous for them.

Again, crisis events could potentially happen at any time, with any client/student/etc. It would be unwise to think “Oh I don’t work with severe behavior individuals, so this doesn’t apply to me”. For ANY of us (disabled or not, mental health issues or not) the right set of circumstances could trigger a crisis event.

If you were in the midst of a crisis event, who would you want helping you? Someone reacting on impulse or instinct, or someone who has been thoroughly and properly trained on safe de-escalation?

So what can be done? Glad you asked.

There are many, many crisis intervention and de-escalation resources readily available. If you are not in the position to set policy or choose employee trainings, you can still request additional training from your employer and send them recommendations of evidence-based methodologies. You can also always communicate when you feel ill-equipped or prepared to work with a specific student/client/etc. or feel unsafe.

Research shows that in the absence of individualized, evidence- based crisis interventions, individuals will contact injury to self and others (Burke, Hagan-Burke, & Sugai, 2003), receipt of medications with serious side-effects that rarely correct the causes of the behaviors (Frazier et al, 2011), receipt of intrusive, ineffective interventions that are punishment-led (Brown et al, 2008), and increased negative interactions (Lawson & O’Brien, 1994).

In ‘Effects of Function-Based Crisis Intervention on theSevere Challenging Behavior of Students with Autism ‘, the following procedures are recommended for crisis intervention planning-

Be cognizant of crisis needs and function when designing a behavior plan for students with crisis behaviors, and operationally describe steps to be taken for each phase of escalation. When describing these steps, be aware of the behavioral function. Change the quality of reinforcement delivered between appropriate and inappropriate behavior, and prompt appropriate behavior before providing access to calming activities. Train staff to competence on the intervention strategies (which most often includes role play scenarios during training, not just discussion/lecture). 

*Recommended Resources (please share!):

~Find the number for the mental health crisis/emergency support services in your state, and save it in your cell phone

~For caregivers, if your child is on medication the Physician/Psychiatrist will likely have an after-hours or emergency help desk. Save that number in your cell phone

https://www.pcmasolutions.com/

https://www.marcus.org/autism-training/crisis-prevention-program

Crisis Intervention Strategies

Prevention of Crisis Behavior

Crisis Help in Georgia

ASD & Crisis Behaviors

Handbook of Crisis Intervention and Developmental Disabilities

ASD & De-Escalation 

Crisis Prevention Institute 

ASD & Stages of Behavioral Escalation

Nationally Certified Crisis Training Providers

About The Author: Tameika Meadows, BCBA

“I’ve been providing ABA therapy services to young children with Autism since early 2003. My career in ABA began when I stumbled upon a flyer on my college campus for what I assumed was a babysitting job. The job turned out to be an entry level ABA therapy position working with an adorable little boy with Autism. This would prove to be the unplanned beginning of a passionate career for me.

From those early days in the field, I am now an author, blogger, Consultant/Supervisor, and I regularly lead intensive training sessions for ABA staff and parents. If you are interested in my consultation services, or just have questions about the blog: contact me here.”

This piece originally appeared at www.iloveaba.com

Parenting For Joy

Editor’s note:  Autism Awareness month is becoming a call to action from the autism and neurodivergent communities for change from the rest of society. In this edited excerpt from their upcoming book with Different Roads, co-authors Shahla Ala’i-Rosales and Peggy Heinkel-Wolfe offer a specific call to action to both parents and professionals—to seek and maintain joy’s radiating energy in our relationships with our children.

Parents have the responsibility of raising their children with autism the best they can. This journey is part of how we all develop as humans—nurturing children in ways that honor their humanity and invite full, rich lives. Ala’i-Rosales and Heinkel-Wolfe’s upcoming book offers a roadmap for a joyful and sustainable parenting journey. The heart of this journey relies on learning, connecting, and loving. Each power informs the other and each amplifies the other. And each power is essential for meaningful and courageous parenting.

Ala’i-Rosales is a researcher, clinician, and associate professor of applied behavior analysis at the University of North Texas. Heinkel-Wolfe is a journalist and parent of an adult son with autism.

Joy gives us wings! ― Abdul-Baha

“Up, up and awaaay!” all three family members said at once, laughing. A young boy’s mother bent over and pulled her toddler close to her feet, tucking her hands under his arms and around his torso. She looked up toward her husband and the camera, broke into a grin, and turned back to look at her son. “Ready?” she said, smiling eagerly. The boy looked up at her, saying “Up . . .” Then he, too, looked up at the camera toward his father before looking back up at his mother to say his version of “away.” She squealed with satisfaction at his words and his gaze, swinging him back and forth under the protection of her long legs and out into the space of the family kitchen. The little boy had the lopsided grin kids often get when they are proud of something they did and know everyone else is, too. The father cheered from behind the camera. As his mother set him back on the floor to start another round, the little boy clapped his hands. This was a fun game.

One might think that the important thing about this moment was the boy’s talking (it was), or him engaging in shared attention with both his mom and dad (it was), or his mom learning when to help him with prompts and how to fade and let him fly on his own (it was), or his parents learning how to break up activities so they will be reinforcing and encourage happy progress (it was) or his parents taking video clips so that they could analyze them to see how they could do things better (it was) or that his family was in such a sweet and collaborative relationship with his intervention team that they wanted to share their progress (it was). Each one of those things is important and together, synergistically, they achieved the ultimate importance: they were happy together.

Shahla has seen many short, joyful home videos from the families she’s worked with over the years. On first viewing, these happy moments look almost magical. And they are, but that joyful magic comes with planning and purpose. Parents and professionals can learn how to approach relationships with their autistic child with intention. Children should, and can, make happy progress across all the places they live, learn, and play–home, school, and clinic. It is often helpful for families and professionals to make short videos of such moments and interactions across places. Back in the clinic or at home, they watch the clips together to talk about what the videos show and discuss what they mean and how the information can give direction. Joyful moments go by fast. Video clips can help us observe all the little things that are happening so we can find ways to expand the moments and the joy.

Let’s imagine another moment. A father and his preschooler are roughhousing on the floor with an oversized pillow. The father raises the pillow high above his head and says “Pop!” To the boy’s laughter and delight, his father drops the pillow on top of him and gently wiggles it as the little boy rolls from side to side. After a few rounds, father raises the pillow and looks at his son expectantly. The boy looks up at his father to say “Pop!” Down comes the wiggly pillow. They continue the game until the father gets a little winded. After all, it is a big pillow. He sits back on his knees for a moment, breathing heavily, but smiling and laughing. He asks his son if he is getting tired. But the boy rolls back over to look up at his dad again, still smiling and points to the pillow with eyebrows raised. Father recovers his energy as quickly as he can. The son has learned new sounds, and the father has learned a game that has motivated his child and how to time the learning. They are both having fun.

The father learned that this game not only encourages his child’s vocal speech but it was also one of the first times his child persisted to keep their interaction going. Their time together was becoming emotionally valuable. The father was learning how to arrange happy activities so that the two of them could move together in harmony. He learned the principles of responding to him with help from the team. He knew how to approach his son with kindness and how to encourage his son’s approach to him and how to keep that momentum going. He understood the importance of his son’s assent in whatever activity they did together. He also recognized his son’s agency—his ability to act independently and make his own choices freely—as well as his own agency as they learned to move together in the world.

In creating the game of pillow pop, parent and child found their own dance. Each moved with their own tune in time and space, and their tunes came together in harmony. When joy guides our choices, each person can be themselves, be together with others, and make progress. We can recognize that individuals have different reinforcers in a joint activity and that there is the potential to also develop and share reinforcers in these joint activities. And with strengthening bonds, this might simply come to mean enjoying being in each other’s company.

In another composite example, we consider a mother gently approaching her toddler with a sock puppet. The little boy is sitting on his knees on top of a bed, looking out the window, and flicking his fingers in his peripheral vision. The mother is oblivious to all of that, the boy is two years old and, although the movements are a little different, he’s doing what toddlers do. She begins to sing a children’s song that incorporates different animal sounds, sounds she discovered that her son loves to explore. After a moment, he joins her in making the animal sounds in the song. Then, he turns toward her and gently places his hands on her face. She’s singing for him. He reciprocates with his gaze and his caress, both actions full of appreciation and tenderness.

Family members might dream of the activities that they will enjoy together with their children as they learn and grow. Mothers and fathers and siblings may not have imagined singing sock puppets, playing pillow pop, or organizing kitchen swing games. But these examples here show the possibilities when we open up to one another and enjoy each other’s company. Our joy in our child and our family helps us rethink what is easy, what is hard, and what is progress. 

All children can learn about the way into joyful relationships and, with grace, the dance continues as they grow up. This dance of human relationships is one that we all compose, first among members of our family, and then our schoolmates and, finally, out in the community. Shahla will always remember a film from the Anne Sullivan School in in Peru. The team knew they could help a young autistic boy at their school, but he would have to learn to ride the city bus across town by himself, including making several transfers along the way. The team worked out a training program for the boy to learn the way on the city buses, but the training program didn’t formally include anyone in the community at large. Still, the drivers and other passengers got to know the boy, this newest traveling member of their community, and they prompted him through the transfers from time to time. Through that shared dance, they amplified the community’s caring relationships. 

When joy is present, we recognize the caring approach of others toward us and the need for kindness in our own approach toward others. We recognize the mutual assent within our togetherness, and the agency each of us enjoys in that togetherness. Joy isn’t a material good, but an energy found in curiosity, truth, affection, and insight. Once we recognize the radiating energy that joy brings, we will notice when it is missing and seek it out. Joy occupies those spaces where we are present and looking for the good. Like hope and love, joy is sacred.

“When there is so much hate and so much resistance to truth and justice, joy is itself is an act of resistance.” ― Nicolas O’Rourke

Photo Credit: Bruno Nascimento c/o Unsplash

Compassionate ABA

Compassion requires three actions: listening, understanding, and acting. ABA is a compassionate practice by definition, because behavior analysts are trained to do each of these actions in very specific ways.

Listening is necessary for consent. Behavior analysts are required by ethical and professional guidelines to ensure informed consent prior to implementing assessment or intervention. Informed consent includes demonstrating that you understand what you are agreeing to, so behavior analysts should be listening to clients and their parents/guardians to determine if this understanding exists. If they are really consenting, clients or their parents/guardians will always be in control of the goals targeted and strategies of intervention.

Understanding occurs through the functional perspective taken by behavior analysts, which means that they take the time to learn and understand why behavior is happening or not happening. After listening to what is important to and for the client, the next step is to assess behavior. Put simply, the behavior analyst endeavors to get into their client’s shoes and figure out why they are acting the way they are acting. The assumption is always that the individual has good reasons for their behavior, and if those actions are going to change, we need to figure out how to replace them or make them less necessary, more efficient, or easier. We assume that people are right about their interactions with the world. If anything needs to change, it is the world, and not the person.

Acting is done through the development of interventions designed to improve the client’s situation and experience, based on the priorities established by the client through listening and consent. Behavior analysts hold social validity to be a very important value, in that not only should behavior change be meaningful and helpful to the individual who is changing their behavior, but the ways in which behavior is changed must also be acceptable. Behavioral interventions are not done to people, but with them, to help them meet their own goals in ways that they find reasonable.

Consent, assessment, and intervention meet the three requirements for compassion – listening to someone to hear what is concerning them, attempting to understand or feel their distress, and then doing something to alleviate their problems. Failure to take steps to listen to concerns and understand behavior takes the “analysis” out of the practice and reduces it to a collection of tricks that sometimes work but often don’t, and sometimes even make things worse. Unfortunately, sometimes poor training or supervision, or simple unethical practice, results in behavior analysis that is not compassionate and that reflects badly on the whole field.

Consider two scenarios that could happen when a well-meaning behavior analyst meets a new client for the first time, and finds that the client engages in high rates of stereotypy:

● Behavior analyst A draws upon her experience and determines that the levels of stereotypy that the client engages in will likely be disruptive in school and other community environments. She informs the family that stereotypy is inappropriate and teaches the parents to implement a comprehensive plan that includes environmental enrichment, positive reinforcement for periods of time when stereotypy does not occur, and asks them to collect data throughout the day on levels of stereotypy. Then she leaves with a promise to return in a week to evaluate their progress. The parents call the agency and say that they don’t think ABA is for them.

● Behavior analyst B has a lengthy conversation with the family about their preferred activities as a family. She asks them what they love to do with their child, and finds that they all enjoy going to the playground but that they usually reserve that activity for chilly days or early evenings and that they have been going less and less. When this is explored a bit further, they share somewhat reluctantly that both parents are uncomfortable when other parents and children stare when their child engages in stereotypy. The behavior analyst asks what they would like to do about this, if anything, or if they feel that their current strategy is working for them. The parents ask if they can think about it, and the behavior analyst agrees to discuss at next week’s meeting. In the meantime, she leaves them with some websites about functional assessment to look over. At the following week’s meeting, the parents say that they would like to prioritize other issues over stereotypy at this time, but they would like to learn more about functional assessment to see if it could help them to understand stereotypy a bit better.

In these scenarios, behavior analyst A provided a set of interventions that are not aversive and potentially not difficult for a trained professional to implement, but perhaps overwhelming to a family newly introduced to ABA. She prioritized the goals for intervention based on her experience rather than the family’s needs and preferences, without taking the time to listen to them and ensure consent. She also did not assess or attempt to understand the behavior and instead attempted to swiftly take action to reduce it. In addition, she did not attempt to determine if the interventions were acceptable to the parents or the child. If the family did choose to continue with her plan, it is possible that stereotypy might have decreased, but it is also possible that her plan would fail to meet the function of the behavior, resulting in unnecessary stress and a poor experience for the child. Ultimately, the family decided that this approach did not fit with their needs and they lost out on all of the potential benefits of well-implemented ABA for other areas of their child’s life, such as improving communication and independence.

By contrast, behavior analyst B moved slowly. She did not start by trying to identify problems, but by listening to the family by exploring their strengths and reinforcers, providing her with knowledge about how to connect with the child and parents and how to create a fun, warm, and enjoyable experience for everyone. She allowed them to share what makes it difficult for them to enjoy those reinforcers, and she opened the door to helping them with this issue if that is what they want. She did not provide a solution without consent or assessment, however. She left them with information and time to think, and the family was comfortable to have her return and continue to explore what would be best for their child in the context of their family. Ultimately, by listening and assessing, this behavior analyst has a chance of eventually acting and providing truly compassionate service and care to this client and family.

Both behavior analysts mean well. Both want what is best for their client. Neither behavior analyst wants to frighten families, make children cry, or take away what they enjoy. Both have rich resources at their disposal, but only one will likely be able to share those resources and meet her goals and the goals of the family. Practicing with compassion keeps communication open, but failure to demonstrate compassion by not listening and not understanding can result in a closed door and a great loss for the family and the field.

When practiced correctly and compassionately, ABA includes several features. First and foremost, there is a continuous emphasis on client and family input. Goals, strategies, and outcome measures are determined in consultation with the individuals who will be affected by the intervention. This includes not only the individual person receiving services, but those who love that person as well. Taking a broad viewpoint that includes the whole family is an important part of compassion.

Next, not only should behavior analysts obtain consent as mentioned earlier, but they should also be sure to get assent from clients who are not able to legally consent. Assent is a less formal version of consent that can be given by children or individuals who have cognitive differences that make it impossible for them to truly consent. Due to the extreme nature of the behavior of some individuals who receive behavior analysis services, at times assent is not obtained for safety reasons. This should only occur during times of crisis when the individual and/or those around them is in true danger. Any such occurrence should be immediately followed by obtaining consent and then conducting assessment and analysis of ways to prevent crises from occurring in the future. Interventions should be acceptable to all parties, including the individual receiving services. Again, many individuals who receive ABA services cannot verbally express assent, but the behavior analyst should be skilled enough to recognize behavioral indicators of assent or lack of assent, and adjust their actions accordingly.

Compassionate behavior analysts are also flexible. They recognize that there are changing circumstances in clients’ and their families’ lives, and that sometimes even effective plans need to be adjusted. They also recognize when sometimes despite their own best intentions, their efforts are not working well and they are willing to step back, reevaluate, and adjust approaches as needed. Behavior analysts should also be honest about what they can offer, their competence and comfort level with what is being asked of them, and how clients and families can best participate in their own services. Finally, it is crucial for behavior analysts to make human connections with the families they serve. Many behavior analysts find it easy to connect with their clients through their reinforcers and successes, but it is also important to maintain a connection with the rest of the people in their clients’ lives by showing interest and concern for them.

One final thought is that compassion can be a two-way street. Behavior analysts can most successfully connect with the client and family when the effort to connect is reciprocated. Although it is up to the behavior analyst to attempt to make the family comfortable in sharing their needs and preferences, sometimes we don’t know what we don’t know. Even the most compassionate and skilled professional might miss something, so families and if possible, clients, should speak up and let them know if that is the case. It is also important to be clear about whether or not consent and assent are being given. If the behavior analyst is not asking for consent, it is perfectly acceptable for the client or family member to pause the interaction and discuss what the limits of implied consent may be in any individual situation. Finally, families who demonstrate flexibility, connection, and honesty in return and who are open about any reservations or discomforts are allowing for the maintenance of a longer-term and more productive relationship, which will only help their loved one more.

References Consulted

Behavior Analyst Certification Board. (2014). Professional and ethical compliance code for
behavior analysts. Author.

Callahan, K., Foxx, R. M., Swierczynski, A., Aerts, X., Mehta, S., McComb, M. E., Nichols, S. M., Segal, G., Donald, A., & Sharma, R. (2019). Behavioral artistry: Examining the relationship between the interpersonal skills and effective practice repertoires of applied behavior analysis practitioners. Journal of Autism and Developmental Disorders, 49(9), 3557-3570.

LeBlanc, L. A., Taylor, B. A., & Marchese, N. V. (2019). The training experiences of behavior analysts: Compassionate care and therapeutic relationships with caregivers. Behavior Analysis in Practice, 13, 1-7.

Taylor, B. A., LeBlanc, L. A., & Nosik, M. R. (2018). Compassionate care in behavior analytic treatment: Can outcomes be enhanced by attending to relationships with caregivers? Behavior Analysis in Practice, 12(3), 654–666.

About The Author

Dana Reinecke is a doctoral level Board-Certified Behavior Analyst (BCBA-D) and a New York State Licensed Behavior Analyst (LBA). Dana is a Core Faculty member and Associate Chair in the Applied Behavior Analysis department at Capella University. She is also co-owner of SupervisorABA, an online platform for BACB supervision curriculum and documentation. Dana provides training and consultation to school districts, private schools, agencies, and families for individuals with disabilities. She has presented original research and workshops on the treatment of autism and applications of ABA at regional, national, and international conferences. She has published her research in peer-reviewed journals, written chapters in published books, and co-edited books on ABA and autism. Current areas of research include use of technology to support students with and without disabilities and online teaching strategies for effective college and graduate education. Dana is actively involved in the New York State Association for Behavior Analysis (NYSABA), and is currently serving as Past President (2019-2020).

The Joy of Genuine Progress: Remote Teaching and Flashcards

This week’s blog comes to us from Kate Connell, the creator of the Picture My Picture flashcard collection. Visit our site to learn more! 

Having three boys at home for three months in 2020 I understand the challenge of remote learning. There were certainly moments of chaos and times that felt overwhelming. But in the mix were also many great moments where I observed genuine progress. Those “ah ha” times, when something previously unclear or unknown was understood, were deeply satisfying. To all the parents and carers out there that are remote teaching right now, all power to you. A key lesson that I learnt was that dedicated learning time is more effective when it is fun. Enter – flashcards. 

Why use flashcards at home?

Flashcards are an ideal tool for teaching kids at home because they are visual. Using visuals can increase the rate at which your child learns  as well as their ability to comprehend, remember and retrieve information. You don’t need to be a qualified therapist or teacher to use flashcards.  

What can flashcards teach?

Flashcards can assist with your child’s learning in many ways. They support language development and can also assist with emotional regulation, critical thinking and memory.  

How do I use flashcards at home?

Flashcards are a very flexible teaching tool. A wide range of activities can be applied to the one set.  They are suitable for pre-school children right through to more advanced learners. The types of activities you can use flashcards for include pairing, sorting, naming, describing and performing. 

Pairing activities

The act of pairing, grouping two or more associated things, assists your child’s ability to reason because to successfully make a pair they need to use systematic steps to arrive at a conclusion. 

A set of ‘Go Togethers’ flashcards is a great resource for learning about pairing. It typically consists of pairs of associated images, such as shoe/sock and bowl/spoon. A fun activity is placing four cards on a table and then having your child match the card handed to them (such as the bucket) with the one on the table (such as the spade). You can talk about the cards as you’re playing “Yes! The stamp goes with the envelope.”

Sorting

Sorting things by type (such as color, shape or purpose) is a skill that develops your child’s language and maths abilities. It is crucial for being able to relate, store and recall words. A set of Categories flashcards is ideal for learning how to sort. It typically consists of a range of categories (e.g. transport, furniture, clothes), with a number of cards per category (e.g. bus, plane, motorbike, ferry and car). 

There are many learning activities you can try with Categories. One is placing five cards on a table from five different categories (eg animals, instruments, transport, food and clothes). Then passing your child the remaining cards from these categories, one by one, and asking them to place the card they are holding on top of the card on the table to which it belongs. So the horse goes on top of the dog and the piano goes on top of the violin etc. 

Naming

Enhancing your child’s vocabulary supports their ability to grasp and express ideas clearly. It also enhances their capacity for abstract thinking. A large set of Nouns flashcards is ideally suited to vocabulary building. It typically consists of many different types of nouns such as animals, occupations and locations.

A very simple activity you can do with the Nouns set is to have your child name the image on the card they are shown, such as “Cat” or “Blender”. Once successful, encourage them to create a sentence relating to the image they are shown (eg “The milk is white”). A Nouns Set can also act as a spring-board for discussing topics in detail such as a swimming pool. You might ask “What do you like about going to the swimming pool?” or “What do we need to take to the swimming pool?”

Performing

The act of performing fosters creative self-expression in your child. Performers have to be critical thinkers, problems solvers and good listeners. Performing is particularly helpful when teaching your child how to regulate their emotions so that they’re calmer and better able to navigate relationships. 

Emotions flashcards can be used to encourage performing. You might ask your child to perform the emotion shown on the card or to enact a brief scenario relating to the emotion such as licking an ice cream then dropping it and feeling sad. Or you might enact a scenario yourself such as opening a present and have your child choose the relevant emotion card from a range of cards. 

Flashcards provide a valuable and accessible resource when teaching your child remotely. They can assist with learning in many ways and each set has a multitude of different uses. By keeping it playful and fun you keep your child engaged and with that engagement comes the learning. 

About The Author

Kate is the owner of Picture My Picture, an international business which specializes in educational flashcards. She is the mother of three boys, Christopher, Louis and Tom. Christopher is on the spectrum of Autism. The flashcard based teaching program she oversaw in the early years of his life was the inspiration for the business she owns today. 

Build Desirable Behaviors

One of my favorite textbooks about ABA is Focus on Behavior Analysis in Education: Achievements, Challenges, and Opportunities. And one of my favorite chapters in that book is called “Building Behaviors versus Suppressing Behaviors,” which focuses on school-wide positive behavior change This is an often-overlooked key concept in behavior analysis that can have a huge impact on the school environment. Furthermore, when we think of ABA, we often think about individual interventions, but the principles of ABA can be highly effective when applied to large environments, such as an entire school.

The chapter references several studies about school-wide behavior change and offers evidence-based practices for achieving such change. It also outlines social behaviors that should be taught, such as how to apologize or how to make a request, then discusses strategies for rewarding the desirable behaviors. I appreciate that it focuses on getting students involved in making such changes.

Teaching these desirable behaviors can often feel challenging with the additional stresses of a special education classroom. One curriculum I have found effective in addressing this problem is Skillstreaming. I often use Skillstreaming in Early Childhood with young learners, and love that it clearly defines desirable behaviors, such as how to listen or how to offer help (see image below), but provides those definitions in simple terms with visual prompts that help our young learners. It also incorporates positive reinforcement for learners who are engaging in those desirable behaviors.

Listening Skill

In summary, there is lots of evidence out there that focusing on what kids should be rather than what they should not be doing is beneficial for the learner and the general culture of the classroom. Providing clearly defined desirable behavior and building instruction in those behaviors throughout the day is essential. And that instruction may need to be more frequent and more detailed for our learners with developmental disabilities.

REFERENCES

Heron, T. E., Neef, N. A., Peterson, S. M., Sainato, D. M., Cartledge, G., Gardner, R., … & Dardig, J. C. (2005). Focus on behavior analysis in education: Achievements, challenges, and opportunities. Pearson/Merrill/Prentice Hall.


Written by Sam Blanco, PhD, LBA, BCBA

Sam is an ABA provider for school-aged students in Brooklyn, New York. Working in education for over 15 years with students with Autism Spectrum Disorders and other developmental delays, Sam utilizes strategies for achieving a multitude of academic, behavior, and social goals. She is also an assistant professor in the ABA program at The Sage Colleges and the Senior Clinical Strategist at Encore Support Services.

The Importance of Replacement Behaviors

I’ve written several posts about the importance of reinforcement, but now I want to turn my attention to another important concept: replacement behaviors. It can be very easy to slip into the habit of telling kids what NOT to do. “Don’t touch that! Don’t pick your nose! Don’t run!” However, if we can turn it around and tell kids what to do instead we often see higher rates of compliance.

Here are a few examples of replacement behaviors you can teach:

  • A student refuses to speak when he/she does not understand a question. You can teach the student what to say, such as “I don’t understand” or “Can I get help?” Teach through modeling and role playing in one-to-one settings, then generalize it to the classroom or other environments in which the skill is necessary.
  • When you begin a math lesson, one student frequently attempts to run out of the room. Introduce a signal or symbol (such as a holding up a stop sign) to request a break. Initially, you might give the break each time the student uses the sign correctly, then begin to require more and more math work before a break is received. This allows for appropriate and safe breaks without disrupting the rest of the class.
  • When your learner is done with dinner, he pushes his plate into the middle of the table. Teach your learner to instead put items in the sink. You might start with just placing the fork in the sink, then add more and more items until he/she is clearing the table independently. Another replacement behavior may be to use a symbol or signal as in the previous example to request to leave the table, or to teach the learner to say “May I go?”

Replacement behaviors should be simple to implement, should be taught one-on-one with multiple opportunities to practice and be reinforced, and should, if possible, be functionally equivalent to the undesirable behavior. (For example, if a child is engaging in one behavior to escape, the replacement behavior should teach a more appropriate way to escape.)

Sometimes, simply instructing the learner on a replacement behavior makes a huge change, but often you need to combine teaching a replacement behavior with other strategies (such as differential reinforcement). What I do know is that identifying and teaching a replacement behavior is a necessary part of almost any intervention and should not be overlooked.


About The Author

Sam is an ABA provider for school-aged students in Brooklyn, New York. Working in education for over 15 years with students with Autism Spectrum Disorders and other developmental delays, Sam utilizes strategies for achieving a multitude of academic, behavior, and social goals. She is also an assistant professor in the ABA program at The Sage Colleges and the Senior Clinical Strategist at Encore Support Services.