On more than one occasion, I’ve been in the situation that a student will only demonstrate a skill in my presence. And I’ve heard from other colleagues that they have had similar experiences. This is highly problematic. When it happens with one of my students, there is only one person I can blame: myself. A skill that a student can only demonstrate in my presence is a pretty useless skill and does nothing to promote independence.
So what do you do when you find yourself in this situation? You reteach, with a focus on generalization. This means that, from the very beginning, you are teaching with a wide variety of materials, varying your instructions, asking other adults to help teach the skill, and demonstrating its use in a variety of environments. Preparing activities takes more time on the front-end for the teacher, but saves a ton of time later because your student is more likely to actually master the skill. (Generalization, after all, does show true mastery.)
Hopefully, you don’t have to do this, though. Hopefully, you’ve focused on generalization from the first time you taught the skill. You may see generalization built into materials you already use.
Another commonly cited issue teachers of children with autism encounter is failure to maintain a skill. In my mind, generalization and maintenance go hand-in-hand, in that they require you to plan ahead and consider how, when, and where you will practice acquired skills. Here are a few tips that may help you with maintenance of skills:
Create notecards of all mastered skills. During the course of a session, go through the notecards and set aside any missed questions or activities. You might need to do booster sessions on these. (This can also be an opportunity for extending generalization by presenting the questions with different materials, phrases, environments, or people.)
Set an alert on your phone to remind you to do a maintenance test two weeks, four weeks, and eight weeks after the student has mastered the skill.
Create a space on your data sheets for maintenance tasks to help you remember not only to build maintenance into your programs, but also to take data on maintenance.
Considering generalization and maintenance from the outset of any teaching procedure is incredibly important. Often, when working with students with special needs, we are working with students who are already one or more grade levels behind their typically developing peers. Failing to teach generalization and maintenance, then having to reteach, is a waste of your students’ time.
Sam Blanco, PhD, LBA, BCBA is an ABA provider for students ages 3-15 in NYC. Working in education for sixteen 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 she is the Senior Clinical Strategist at Chorus Software Solutions.
By: Stephanny Freeman, PhD and Kristen Hayashida, MEd, BCBA
The new year brings opportunities for introducing new ideas and refining existing techniques for young learners. This week, we’re revisiting a blog from our archives that focuses on executive function.
When kindergarten teachers are asked what skills they would like their students to have the beginning of the year, their answers might be surprising! Parents and caregivers are often concerned with making sure their children can say their ABC’s, count to 10, and know their colors. Some may believe that their children should be reading by the time they start kindergarten. However, kindergarten teachers often have a different set of priorities, and instead are looking for skills such as:
The ability to listen to and follow directions
Follow classroom routines
Control impulses
Resolve a conflict or solve a problem calmly with another child
Kindergarten teachers value these skills because they are critical for school readiness, paving the way for children to be academically and socially successful. Moreover, children who are behind in these skills can require disproportionate amounts of teachers’ attention, derail classroom activities and routines, and interfere with other children’s learning.
Underlying these school readiness skills are a set of higher order thinking skills collectively referred to as Executive Functions (EFs). EFs are the cognitive control functions that help us inhibit our initial impulses and think before acting.
But while most teachers agree that EF skills are very important, they are not explicitly taught in most early education settings (or at any point in most children’s educational experiences).
What skills are part of executive functioning?
Three key skills are generally agreed upon as the core of EF:
Working memory: holding information in mind to manipulate, work with, or act on at a later time.
Inhibitory control: the ability to regulate one’s attention, behavior, thinking, and emotion particularly in response to distractions or temptations.
Cognitive flexibility: the capacity to shift one’s thinking, such as changing one’s approach to solving a problem if the previous approach is not working or recognizing and responding when the demands of that task have changed.
Seven additional skills are also considered to fall under the umbrella of EF, often relying and building on the three foundational EF skills:
Initiation: the ability to begin a task or activity or to generate ideas independently in order to answer questions, solve problems, or respond to environmental demands.
Fluency: how fluidly one can access and use relevant knowledge or skills.
Planning: the ability to identify and sequence all the different steps needed to achieve a specific goal.
Organization: the capacity to prioritize and make decisions about which tasks to undertake, and the needed resources to complete those tasks.
Problem solving: carrying out the steps to achieve a desired goal, while monitoring progress making necessary adjustments.
Time awareness: part of the broader skill of Time Management, which includes to the ability to anticipate how long tasks might take, to be aware of time constraints, track one’s progress, and adjust one’s behavior in order to complete tasks efficiently.
Emotion regulation: skills including identifying one’s own emotion states and responding appropriately to emotional experiences.
Why do executive function skills matter?
Executive function skills predict a host of short-term and long-term outcomes!
They are a stronger predictor of school readiness than IQ.
They are also associated with higher achievement in both reading and math throughout children’s schooling.
EF skills, when tested in early childhood predict outcomes later in childhood and adolescence, including psychological and physical health.
Because EF skills are so predictive of later outcomes, they are being increasingly recognized as a critically important focus of intervention.
Early EF training is … an excellent candidate for leveling the playing field and reducing the achievement gap between more- and less-advantaged children.
Diamond and Lee (2011, p. 6)
Can executive function skills improve?
Yes! All young children (typically developing and those with difficulties) can benefit greatly from instruction in EF! Frequent practice of these skills and gradually raising the difficulty benefits children most in generalization and increasing gains. Practitioners and parents should consider:
Providing focused instruction in EF skills.
Combining explicit targeted instruction in EF skills with other activities in which they can then apply and practice those skills.
Building targeted EF skills into daily routines.
Providing multiple opportunities every day, particularly for children with disabilities, to test out and practice EF skills.
Most experts consider the development of self-regulation skills, of which executive functions are the crown jewel, to be the most important objective of high quality preschool—to help children focus attention, be emotionally expressive, not be impulsive, and to engage in purposeful and meaningful interactions with caregivers and other children.
Blair (2017, p.4)
About The Authors
Dr. Stephanny Freeman is a clinical professor at UCLA, a licensed clinical psychologist, and Co-Directs the Early Childhood Partial Hospitalization Program (ECPHP). For 20 years, she has educated children with ASD and other exceptionalities as a teacher, studied interventions for social emotional development, and designed curriculum and behavior plans in school and clinic settings.
Kristen Hayashida is a Board Certified Behavior Analyst at the UCLA Early Childhood Partial Hospitalization Program (ECPHP). For the last 10 years she has served as a therapist, researcher and educator of children and families living with autism spectrum disorder through the treatment of problem behavior.
Reviewed by David Celiberti, PhD, BCBA-D and William L. Heward, EdD, BCBA-D Association for Science in Autism Treatment
This month’s ASAT feature comes to us from Executive Director David Celiberti, PhD, BCBA-D,Association for Science in Autism Treatment and William L. Heward, EdD, BCBA-D, Professor Emeritus, the College of Education and Human Ecology at Ohio State University. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!
Parents of children with autism face many challenges beyond those directly associated with raising a child who may have a myriad of needs. They face a dizzying array of treatment options with interventions lacking any scientific basis, which are cleverly marketed and often eclipse those interventions enjoying scientific support. Access to qualified, compassionate providers may be difficult or delayed, particularly for children in rural communities, children of color, individuals who age out of the educational system, and families outside of the United States. Misconceptions and misinformation about autism and ways to help people with autism abound and those messages often distract and derail many parents from obtaining accurate information, support, and intervention. Parents who seek help for their children are often harshly criticized and labeled by some bloggers as lacking love or acceptance. Taken together, these realities can weigh heavily on parents who are just trying to help their children with autism develop independence and purpose, pursue their dreams, and live their best lives.
Fortunately, a new book provides a break from the vitriol, snake oil, and antagonism. Between Now and Dreams thoughtfully and artfully explains the complementary concepts of responsible and responsive parenting of children with autism. It provides a space for parents to reflect, to engage, and to look ahead.
Prior to offering details about this book, the first reviewer would like to share some background. I first met Shahla Ala’i-Rosales and Peggy Heinkel-Wolfe thirty years ago at the University of North Texas (UNT) when I was a newly hired Assistant Professor in the Department of Psychology. Shahla was a behavior analyst, researcher, and practitioner in early autism intervention; Peggy, the mother of a son with autism, held an administrative job at the University. With a few other UNT colleagues, we formed a small working group to support each other in our individual efforts as well as to develop a community in which future collective efforts could take root. My time at UNT was brief, but I am so pleased (and a tad jealous) to know that Shahla and Peggy continued to collaborate and form a long-term friendship and professional alliance. Their book, Responsible and Responsive Parenting in Autism: Between Now and Dreams is a timely, and much needed gift to the autism community. Ala’i-Rosales and Heinkel-Wolfe share a series of interrelated events – challenges, plans, setbacks, and victories, large and small – in the lives of real children and their families (including their own). These stories demonstrate the importance of recognizing and celebrating children’s capabilities while encouraging and nurturing their self-actualization, individuality, and independence.
The authors put forth that raising a child with autism with an abundance of joy, purpose, and serenity relies on three interconnected powers: learning, connecting, and loving. Although the authors state that these powers are interconnected and that they influence and strengthen each other, Ala’i-Rosales and Heinkel-Wolfe have used them to organize their book into three unique parts. Each part is composed of several chapters; each chapter opens with a thoughtful quote that sets the stage for the lessons and wisdom that follows.
Part One: The Power of Learning
Between Now and Dreams opens with a section devoted to principles of learning and how those principles can guide parents’ efforts to help develop their child’s fullest potential. The authors stress the need for creating and implementing carefully planned, intensive, positive applied behavior analysis (ABA) interventions in the home to keep children learning and moving forward in their lives. The abundance of examples discussed throughout this section showcase the vast applications of the science of behavior. Parents who are new to the autism journey will gain comfort in learning about principles that can be readily incorporated into their daily lives and appreciate a shift away from resolving problems to one of promoting empowerment and skill building, both for themselves, as well as for their children.
This section also chronicles the journey of ABA from its early applications to autism treatment, and to what the discipline has become today. The authors provide a sensitive and honest discussion of the bumps along the way.
Part Two: The Power of Connecting
This section of Between Now and Dreams will be invaluable for caregivers who may struggle with feelings of isolation, associated with both raising a child with many needs and experiencing the loss or shift in other relationships and career pursuits that may have followed their child’s diagnosis. Ala’i-Rosales and Heinkel-Wolfe beautifully capture the pursuit of supportive relationships, including with those who offer expertise and experience, as well as with other parents on very similar journeys. How one seeks and nurtures these relationships, as well as opting out when needed, is described with the same compassion and generosity reflected throughout the book.
Part Three: The Power of Loving
The third section of Between Now and Dreams ties together the two prior sections. On its surface, a reader may assume that the section might focus myopically on positive emotions. Instead, the authors are realistic and don’t sugarcoat the challenges parents of children with autism face. Loss, fear, and disappointment are discussed openly in the context of numerous experiences, observations, and epiphanies. We left this section feeling grateful to the authors for being so incredibly transparent and vulnerable, yet insightful and encouraging in guiding us to be more active and loving parents.
Responsible and Responsive Parenting in Autism: Between Now and Dreams is an important, eloquently written, and engaging book for parents of children with autism of any age and who fall anywhere on the spectrum. It does not provide a cookie cutter approach, but rather a compassionately delivered collection of useful and practical suggestions that parents can select and tailor to their own home and goals.
Aside from behavior analysts, this book is also a must-read for teachers, therapists, medical providers, and others who work with children with autism. The content is accessible to those who are new to ABA and autism intervention, yet impactful for professionals with extensive training and experience.
Citation for this article:
Celiberti, D., & Heward, W. L. (2023). Book Review: Between Now and Dreams. Science in Autism Treatment, 20(3).
About the Authors
David Celiberti, PhD, BCBA-D, is the Executive Director of ASAT and Past-President, a role he served from 2006 to 2012. He is the Editor of ASAT’s monthly publication, Science in Autism Treatment. He received his PhD in clinical psychology from Rutgers University in 1993 and his certification in behavior analysis in 2000. Dr. Celiberti has served on a number of advisory boards and special interest groups in the field of autism, applied behavior analysis (ABA), and early childhood education. He works in private practice and provides consultation to public and private schools and agencies in underserved areas. He has authored several articles in professional journals and presents frequently at regional, national, and international conferences. In prior positions, Dr. Celiberti taught courses related to ABA at both undergraduate and graduate levels, supervised individuals pursuing BCBA certifications, and conducted research in the areas of ABA, family intervention, and autism.
William L. Heward, Ed.D., BCBA-D, is Professor Emeritus in the College of Education and Human Ecology at Ohio State University. He has taught at universities in Brazil, Japan, Portugal, and Singapore and lectured and given workshops in 23 other countries. A Past President and Fellow of the Association for Behavior Analysis International, Bill’s publications include co-authoring the books, Let’s Make a Contract: A Positive Way to Change Your Child’s Behavior (2022), Applied Behavior Analysis (3rd ed., 2020), and Exceptional Children: An Introduction to Special Education (12th ed., 2022). Awards recognizing Dr. Heward’s contributions to education and behavior analysis include the Fred S. Keller Behavioral Education Award from the American Psychological Association’s Division 25, the Ellen P. Reese Award for Communication of Behavioral Concepts from the Cambridge Center for Behavioral Studies, and the Distinguished Psychology Department Alumnus Award from Western Michigan University.
By Mariela Vargas-Irwin, PSYD, BCBA-D, LABA, Executive Director of ABLS
Every day was hard with 5-year-old Tony. He would purposely find ways to annoy others and just did not seem to respond to consequences. The school tested him and said that there was nothing wrong; in fact, they said he was gifted.
Another child, Latoya, was never the same after being in a car accident. She cried all night and refused to get into any car. She also seemed to be unable to play with any of her previously preferred toys for long and had frequent tantrums.
Then there was 10-year-old Maria, who didn’t seem to be making any progress at school. She had an intellectual disability and her Individualized Education Program looked good on paper. However, she was becoming more aggressive each day and her language continued to be very limited.
Finally, Autumn, 2 years old, was in a fog. She stopped saying mama and dada, cried for no apparent reason, and ran in circles all the time.
Developmental and behavioral concerns about your children, such as those listed above, can be extremely distressing. Of course, you would do anything for your child!
But where to start?
What Tools Do I Need?
The first step is to consult your pediatrician. They will be able to rule out any possible medical problems and are more likely than a specialist to be able to see you quickly. Once a physical cause for your concerns is ruled out, your pediatrician will most likely refer you to a psychologist for an assessment. There are, however, several kinds of assessments that can be conducted.
A Comprehensive Diagnostic Assessment will include a cognitive and an adaptive assessment. It may include both norm-referenced assessments that compare children to others, as well as criterion-referenced tests that compare students to themselves. A Comprehensive Diagnostic assessment may result in a diagnosis such as Autism or Attention Deficit Hyperactivity Disorder.
The psychologist or a behavior analyst may also perform a Functional Behavior Assessment. A Functional Behavior Assessment examines the functions of the behavior via direct and indirect methods helping guide the development of a Behavior Support Plan.
Another type of assessment that may be helpful is a Program Assessment. A Program Assessment includes a visit to your child’s school to determine whether their needs are being met and their Individualized Education Program is being implemented properly.
Lastly, a Neuropsychological Assessment examines executive functioning skills, attention, and memory, in addition to cognitive and adaptive skills.
How Would Assessments Help My Child?
To speak to the above examples, Tony would need a Comprehensive Diagnostic Assessment and a Functional Assessment to ascertain the function of his aggressive and disruptive behavior. The fact that he is gifted intellectually does not rule out that he may be struggling with Attention Deficit Disorder with Hyperactivity, Autism, or Post Traumatic Stress Disorder.
Latoya would need a neuropsychological assessment that will examine executive functions, language, and attention to ascertain the impact of the accident on her neuropsychological functions. Typically, a complete neuropsychological assessment is conducted immediately after the accident and then repeated every six months.
Meanwhile, Maria would require a Program Assessment to determine whether her school program is meeting her needs. This assessment should include a complete review of her progress reports in addition to a visit to her school. She may also need a Functional Assessment of her aggressive behavior at home.
Lastly, Autumn urgently needs a Comprehensive Diagnostic Assessment to rule out Autism. If she does have Autism, she will need intensive early behavior analytic intervention to be implemented as soon as possible so time is of the essence.
Whatever the assessment process holds for your learner, it is important that the instruments used are both reliable and valid, and ideally they would be able to be utilized to track progress over time. Every child is different; therefore, no assessment process will proceed identically.
About the Author
Dr. Mariela Vargas obtained her doctoral degree from Rutgers University, completed her internship at Boston Children’s Hospital, and pursued post-doctoral training at the Baker Children’s Center. She has over thirty years of experience working with children with autism and other developmental disorders with behavioral challenges. Dr. Vargas has worked as a home-based behavioral therapist, overseen home-based programs, designed training protocols for ABA therapists and supervisors, and consulted with families and schools. She was the second president of the Massachusetts Association for Behavior Analysis and has presented in numerous national and international Autism and ABA conferences. A licensed Psychologist and Board Certified Behavior Analyst, she is the founder and executive director of Applied Behavioral Learning Services (ABLS). Her interests include inclusion, psychometrics, social skills, and executive behavior.
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: Randy Horowitz, M.S. Ed., S.A.S. and Joanne Capuano Sgambati, Ph.D., BCBA-D, LBA
Sexuality is part of normal human development for every man, woman and child. It is a basic need and an integral part of life. Sexuality is not just physical maturity and sexual intercourse; it is diverse and personal. It’s about relationships, intimacy, and thoughts and feelings about other people. Individuals with ASD follow the same physiological sexual development and interests as their typically developing peers; About 75% of individuals on the spectrum desire and engage in some form of sexual behavior. (A comparable percentage to the neuro-typical population). Behaviors range from masturbation to intercourse and many steps along the way. Individuals with ASD have the same sexual interests, needs, and rights as anyone else, they just may not have the same ways to express themselves and share their feelings.
So what else is unique about individuals with ASD in relation to sex education?
Poor social competence and limited peer relationships lead to few opportunities to obtain sexual information, have sexual relationships, and fulfill their desire to have a healthy romantic and sexual life.
Cognitive differences (difficulty with inferencing, perspective taking, and theory of mind) can impact their understanding, generalization, and application of sexual information.
Language and communication challenges as well as social skills deficits can get in the way of initiating and maintaining relationships.
Societal barriers which interfere with learning necessary sexual information that can prevent intimate relationships from taking place.
It is a natural instinct for parents and teachers to want to protect their children; however, by avoiding speaking about sexuality and sex education, they may be suggesting that sexuality is unimportant or shameful and they may be leaving their children even more vulnerable to frustration, problematic behaviors, social isolation, anxiety, depression, low self-esteem and even victimization.
So, how can we best educate learners with ASD about sexuality?
Start early: Children with ASD may have a hard time with change and take longer to learn concepts. Start very early; and present positively in a calm and clear manner:
Body part ID
Using appropriate words and language to identify genitals.
Private vs. public (e.g., places, behaviors, hygiene, and eventually conversations and on-line activities etc.)
Remember what is cute as a child (like hugging teachers), may be inappropriate in middle school. So, teach appropriate social boundaries early on. Do not wait until puberty to discuss body changes as it can be alarming to teens with ASD who resist change (pubic hair, private time for masturbation, shaving, bras, maxi pads, etc.).
Use appropriate teaching strategies: You can teach sexuality skills the same way you teach other skills to those with ASD. Some ideas are use of visuals, schedules, task analysis, functional communication training, and video modeling. Remember that sexual behavior is still behavior and adheres to the laws of applied behavior analysis. If there is a behavior to increase, decrease, or maintain it is important to know the function of that behavior in order to modify it.
Remember while teaching make sure you are aware of issues regarding consent, legalities in your state, wishes of the parents, policies of your agencies and how your intervention will look to others.
Teach independence: It is natural for parents to want to protect their child with ASD but to avoid sex education and relationship development may actually make the individual vulnerable to dependency. Teach independence on skills that are transferable to sex education:
personal hygiene
dressing
toileting
use of a cell phone
who and how to call in an emergency
Don’t do anything for them that they can do for themselves. This will help the child be less dependent on others for “help” and able to make their own decisions.
Teach safety skills: . Children with ASD are typically taught compliance, They may not know how to self-advocate and say “No” because they have been rewarded for compliance and listening to people who are “in charge”.
Teach them to say “NO” when asked to do something they do not want to do (i.e. “No thank you, I do not want a hug”).
Teach them that “Your body belongs to you” and rules for touching (appropriate vs inappropriate touches). They need to know they have rights over their bodies and how to “report” any inappropriate sexual behaviors or abuse.
Teach the obvious: Most children learn from a variety of sources: family, peers, TV, movies, internet etc. Those on the spectrum may not pick up on all this information. They may need things spelled out for them in a concrete literal fashion. “You cannot date women younger than 18”. Avoid or explain confusing language. “A “hook-up” is slang for meeting someone for sex and not a relationship.”
Teach about relationships: Explain the variety of relationships that people have (friendship vs love vs intimacy) and (close family and friends vs professionals, acquaintances, and strangers). Help them be social, learn social communication skills, and make friendships. Best friendships form from common interests (e.g., video games, “Anime”, trains etc.). The internet can help you find special interest groups and meet ups. There are also speed dating and singles groups for those with ASD.
Teach them about themselves: They need to develop self-esteem and a healthy self-concept. Understanding their diagnosis, strengths and weaknesses will help them be better advocates for themselves. Being a better self-advocate will also help protect their sexual well-being.
Randy Horowitz, M.S. Ed., S.A.S.
Randy has a Master of Science in Education from Queens College and a Certificate of School Administration and Supervision from the College of New Rochelle. Randy is currently a doctoral candidate in the educational leadership program at Concordia University. Randy started her career as a special education teacher in public school in Nassau County and then spent close to 30 years in senior leadership positions at nonprofit organizations serving children and adults with autism in NYC and Long Island. Randy has presented at local, national and international conferences on topics relating to educating individuals with autism. Her particular areas of interest include preparing and supporting individuals with autism for integration into community activities.
In addition to her many work responsibilities, Randy is also a seasoned runner and has participated in countless road races and marathons, including our Blazing Trails Run/Walk, raising well over $65,000 in the past 15 years to benefit the autism community.
Joanne Capuano Sgambati, Ph.D., BCBA-D, LBA
Dr. Sgambati serves as the Director of Psychological Services for Eden II’s Genesis Programs on LI. She specializes in consulting, counseling, evaluations, and behavior management of individuals with autism spectrum disorder (ASD). For the past 30 years, she has been dedicated to using positive behavior approaches, applied behavior analysis (ABA), for enhancing the lives of students in special education and adults on the autism spectrum. Dr. Sgambati is an active participant in Eden II’s Genesis Outreach Department conducting live presentations and webinars on a variety of topics at organizations, conferences, schools, and universities. She also conducts training seminars for local schools and various parent organizations. Dr. Sgambati specializes in ABA interventions for families of children and adults with special needs who demonstrate challenging behaviors. She is also the proud parent of two young adults on the Autism Spectrum.
Ames, H. & Samowitz, P. (1995). Inclusionary standards for determining sexual consent for individuals with developmental disabilities. Mental Retardation, 4, 264-268.
Davies, C., Dubie, M. (2012). Intimate Relationships & and Sexual Health: A Curriculum for Teaching Adolescents/Adults with High Functioning Autism Spectrum Disorders and Other Social Challenges.
Griffiths, D. (1999) Sexuality and developmental disabilities: Mythconceptions and facts. In I. Brown and M. Percy, (Eds.). Developmental Disabilities in Ontario (pp. 443-451). Toronto: Front Porch Publishing.
Griffiths, D.M., Richards, D. , Fedoroff, P., & Watson, S.L. (Eds.) 2002. Ethical dilemmas: Sexuality and developmental disabilities. NADD Press: Kingston, NY
Hanault, I. (2006). Asperger’s Syndrome and Sexuality: from Adolescence through Adulthood. (information and lessons for students on the less cognitively impaired end of the spectrum)
McLaughlin, K., Topper, K., & Lindert, J. (2010). Sexuality Education for Adults with Developmental Disabilities, Second Edition. (structured group model) Schwier, K.M., & Hingsberger, D. (2000). Sexuality: Your sons and daughters with intellectual disabilities. Baltimore: Paul H. Brookes Publishing
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.
DuBay, M., Watson, L. R., & Zhang, W. (2018). In Search of Culturally Appropriate Autism Interventions: Perspectives of Latino Caregivers. Journal of autism and developmental disorders, 48(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 practice, 9(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
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.
Awareness of Own Cultural Biases
Cultural awareness is the first step to providing culturally ethical treatment. Providers should concurrently and habitually engage in practices in which they remain aware of their own predetermined perceptions and acknowledge their own limitations to cultural competency. As mentioned in Fong et. al (2016), “cultural awareness may be important because behavioral patterns that are viewed as problematic in our own culture may be the norm in other cultures”. Due to limitations in diversity within most helping professions, a learner’s provider is often from a different cultural background.
Thus, it is essential to understand the traditions of that culture. As an example, physical punishment may be common practice in some black communities which has been perceived to be deeply rooted in racial trauma (Patton, 2017). It would be insensitive for a provider from a different cultural background to ignore that this practice is a cultural tradition, and thus blame or stigmatize black parents for their choices. Rather, “professionals can offer information about why the practice is harmful but have been told it is necessary, and offer healthier alternatives that produce better outcomes for children, families and communities” (Patton, 2017). Cultural sensitivity is facilitating the development of our programs by checking our own biases and how they may affect our choices in treatment.
Selection of Target Behaviors and Programmatic Materials
A few years ago, a client from Asian descent was transferred to me from another behavior analyst. When assessing the barriers to treatment, my client made minimal progress when asked to identify a fork. Believing that an object, rather than a picture might help, I asked the client’s parents for a fork. When obtaining the fork, the parents expressed that they do not use forks to eat. In their culture, hands and chopsticks are typical eating utensils. Thus, when considering cultural sensitivity, this includes selecting programmatic targets that are common in the client’s environment and the cultural norms.
The teaching materials should be as individualized as the treatment plan too. We should rely on diverse representation in the resources we use in treatment. Providers should use materials that represent the individual’s environment, which is typically a blend of many different ethnicities. When providing resources like visual schedules, do your cartoons or pictures represent the racial identity of your learner? If you are teaching body parts on a doll, do you provide toys that look like your learner? To be a culturally sensitive professional, one should give precedence to ethnic representation to allow the learner to feel validated and treat them with dignity.
The cultural assessment process should be used to inform treatment, specifically when designing the program for validity and selecting targets for skill acquisition (Fong et. al, 2016). When beginning a new lesson or treatment program, it is essential that providers select socially meaningful and significant target goals. However, in selecting these goals for treatment, professionals must consider the cultural norms and needs of the client.
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.
DuBay, M., Watson, L. R., & Zhang, W. (2018). In Search of Culturally Appropriate Autism Interventions: Perspectives of Latino Caregivers. Journal of autism and developmental disorders, 48(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 practice, 9(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
automatic punishment Punishment that occurs independent of the social mediation of others (i.e., a response product serves as a punisher independent of the social environment).
In this month’s ASAT feature, Executive Director David Celiberti, PhD, BCBA-D, offer, OPs his thoughts on expanding autism awareness once April has ended. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!
Autism Awareness Month will soon come to a close. The blue puzzle pieces will disappear from Facebook pages and billboards, the media will focus their attention on other topics of interest, and we will return to business as usual. And business as usual is not OK, particularly given that so many children and adults with autism are not accessing the most effective, science-based interventions that will allow them to realize their fullest potentials.
When I first entered the field over twenty-five years ago, autism was considered a rare condition. When people asked what I did for a living, they often misheard me and thought I worked with “artistic” children. Today, autism is no longer the rare diagnosis that impacts someone else’s child. Our extended families, our neighbors, and our co-workers are now all touched by autism. With 1 in 68 children receiving a diagnosis, the sheer number of individuals with autism is staggering and heightens awareness in and of itself.
For many conditions, awareness is key because awareness promotes detection, and with detection comes a relatively clear path towards treatment. Take, for example, conditions such as Lyme disease and many forms of cancer. Better prognoses are attached to early detection. Within a few short weeks of detection and diagnosis, patients typically receive science-based treatment. If their conditions are not detected early, then access to such treatments is delayed and their conditions will likely worsen. In the world of autism, detection is not the “be all and end all.” We do not just have a detection issue in autism, but also, and perhaps more importantly, we have an intervention issue.
It is my hope that the conversation about autism awareness will be broadened to focus upon and overcome the obstacles that separate individuals with autism from effective, science-based intervention, and that those that separate their families, caregivers, and teachers from accurate information about autism intervention.
I leave you with 10 ideas about what “autism awareness” should be about.
“Autism Awareness” should recognize the need to differentiate effective treatments that are scientifically validated from the plethora of “therapies” and “cures” lacking scientific support. Autism treatment has become a multi-million dollar industry with 500+ alleged treatments and thus, science sadly placed on the back burner. This means that heart wrenching testimonials, surveys that are pawned off as scientific research, and outrageous claims abound, making it challenging for parents to determine the best course of action for their child. The aggressive marketing of these “therapies” and “cures” is absolutely overwhelming for parents who are desperate for accurate information to help their children realize their fullest potential. For most other medical conditions, a provider that disregards proven intervention and uses a fringe treatment may actually be sued for malpractice. Such safeguards are not yet well established for autism treatment.
“Autism Awareness” must recognize the responsibility that we have, as a society, to make sound choices.I use the term “society” given the myriad of stakeholders who make critically important decisions for persons with autism – not just parents, but siblings, teachers, treatment providers, administrators, program coordinators, elected officials and even tax payers. Decision-making power comes with tremendous responsibility. There are far too many individuals with autism who are not receiving effective treatment, are receiving ineffective treatment, or are subjected to treatments that are, in fact, dangerous. Every minute of ineffective intervention is one less minute spent accessing effective intervention. Choices made have profound implications.
“Autism Awareness” must recognize that available information (and information providers) varies greatly in accuracy.As we know, not all information on the Internet is reliable and accurate. Often Internet information is deemed equivalent in relevance, importance, and validity, to research published in peer-reviewed scientific journals. It is not.
Autism Awareness” must include careful and responsible reporting by journalistsThere are dozens of “miracle cures” and “breakthroughs” for autism that receive widespread media attention, even if they have not been proven effective. Unfortunately, treatments actually shown to be effective typically receive the least amount of media attention. It is hard to imagine that things will improve dramatically for the autism community in the absence of more accurate representations of autism treatment in the media.
“Autism Awareness” should recognize the critical need for newly diagnosed children to access effective treatment as soon as possible.We also know that we have a limited window of time to prepare children for the least restrictive setting once they enter public school. The fact that resources allocated early can save a tremendous amount of resources over an individual’s lifespan does not always enter the conversation when evaluating costs and benefits. That must change.
“Autism Awareness” should also instill hope for a better tomorrow for those individuals who are not part of the “best outcome” group.With the right treatment, individuals with autism can lead happy and fulfilling lives. Research indicates that interventions such as applied behavior analysis (ABA) can effectively help children and adults with autism realize their fullest potential. The conversation about “cure” often delegitimizes and derails important conversations about how we can help individuals with autism live and work independently, develop meaningful and sustainable relationships, reduce challenging behaviors that may limit opportunities, access faith communities, and enjoy the array of recreational pursuits that are available within their communities. Those are important conversations to have.
“Autism Awareness” must mandate accountability from all treatment providers. Accountability involves a shared commitment to objectively defined targets, data collection, and respect for the scientific method. It is every provider’s responsibility to objectively measure outcomes regardless of their discipline. No one should get a pass on accountability. No one is immune from defining their target and objectively measuring progress. No one should get away with implementing their intervention carelessly and in no-transparent manner. No one should be permitted to boast claims that they cannot demonstrate through data. These unfortunate realities should not be tolerated.
“Autism Awareness” must involve recognition that an abundance of clinical research already exists.Too often the plethora of peer-reviewed research that could guide and inform treatment efforts is disregarded altogether. If treatment providers and consumers are interested in published research on diverse topics such as improving conversation skills, promoting academic skills, eliminating pica, or developing tolerance for dental procedures, they can find it. Thousands of researchers have worked hard at publishing their findings in peer reviewed journals and their findings are often overshadowed by a media that practices sensationalism to provide consumers with information about the “next big thing” in autism treatment.
“Autism Awareness” should help us identify and overcome the barriers that face our families everyday.Not every child with autism is invited to birthday parties. Not every faith community welcomes families of children with autism. Not every school provides meaningful contact between students with autism and their typically developing peers. Not every community provides recreational opportunities for individuals with autism. The absence of these opportunities is both a function of misinformation about autism and the lack of awareness about the successful efforts of others who have overcome such barriers. With 1 in 68 children being diagnosed, every facet of society would benefit from evaluating what they are doing, what they are not doing, and what they could be doing differently.
“Autism Awareness” should be about the reality that the hundreds of thousands of children with autism will soon become hundreds of thousands of young adults with autism. We are facing a crisis in the field with a scarcity of services for adults with autism and the absence of a clear strategy for closing the gap between the ever increasing need, and an unprepared supply of resources. The Association for Science in Autism Treatment has committed to broadening its scope to be a part of an important dialogue about adults with autism.
We all play a role in bettering the lives of individuals with autism and helping their families and supporters become skilled and savvy consumers. Embrace that role with an eye toward identifying what additional steps you can take to become a contributor to important conversations and an even bigger part of the solution.
David Celiberti, PhD, BCBA-D, is the part time Executive Director of ASAT and Past-President, a role he served from 2006 and 2012. He is the Co-Editor of ASAT’s newsletter, Science in Autism Treatment. He received his PhD in clinical psychology from Rutgers University in 1993. Dr. Celiberti has served on a number of advisory boards and special interest groups in the field of autism, applied behavior analysis, and early childhood education, and been an active participant in local fundraising initiatives to support after school programming for economically disadvantaged children. He works in private practice and provides consultation to public and private schools and agencies in underserved areas. He has authored several articles in professional journals and presents frequently at regional, national, and international conferences. In prior positions, Dr. Celiberti taught courses related to applied behavior analysis (ABA) at both the undergraduate and graduate levels, supervised individuals pursuing BCBA certifications, and conducted research in the areas of ABA, family intervention, and autism.
