Tag Archives: autistic spectrum disorder

What is the Importance of Engagement When Working with Individuals with Intellectual and Developmental disabilities and Autism?

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This month’s ASAT feature comes to us from Dr. Karen Parenti, MS, PsyD CEO/Executive Director, and Heather Rothman, BS, LBS, Director of Day Services, Special Friends Foundation. 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!

I am the parent of an adult with autism, who will soon transition from a school program to adulthood. I am reading about engagement as an indicator of good programming. What does it mean and how can I tell if a program promotes it?

Answered by Karen Parenti, MS, PsyD, CEO/Executive Director, and Heather Rothman, BS, LBS, Director of Day Services, Special Friends Foundation

Transition into adult programming is an important, but often stressful, process for families and individuals to experience. Adult programming should be designed to build skills and to promote happiness. Essentially every parent wants their adult child to have a high quality of life, to be offered activities they find enjoyable, and to be self-determining. For this to happen, the individual needs to be fully engaged in the program. Family members, clinicians, behavior analysts, program specialists, administrators, and social workers who provide services to individuals with intellectual and developmental disabilities and autism (ID/A) need to remember the importance of active engagement when planning and implementing programs as well as when designing goals.

Imagine for a minute the perspective of an individual receiving services. In most cases, this means the individual has had a diagnosis of some kind since childhood. The current model for treatment in children may result in a consistent feeling of “other-ness,” whether that looks like segregated classrooms, peer mentors, wraparound therapists, or specialized activities dependent on the label. From the perspective of the individual, this can look like endless task demands, shallow or contrived social interactions, decreased opportunities for genuine relationships, and severely limited access to the community. In addition, for a lot of the individuals served, the ability to protest “appropriately” is diminished, either because of communication barriers or skill deficits, or because they are not given opportunities to practice these skills. Empowering individuals to become architects of their experience and to express dissent and discomfort are crucial goals to ensure agency, assent, and quality of life. In addition, providing more choices can be part of a trauma-informed focus of care, and can ensure that individuals are served in a humane and compassionate manner (Rajaraman, 2021).

Although engagement as a clinical construct has yet to be deeply researched in applied behavior analysis (ABA), there has always been an ongoing interest in social validity, which is an emerging interest in the field (Morris et al, 2021). It should be noted that in the workforce, engagement has been defined for employees and became understood as a configuration of vigor, dedication, and absorption that motivates exceptional work performance (Leiter, 2019). Engagement, just like all metrics of success in the human services and special education fields, is personal and individualized for everyone. It is therefore important that engagement is individually assessed and monitored for everyone; from a parental or caregiver perspective, it is important to help the team understand how your family member expresses happiness, dissatisfaction, and protest. Teams may work to ensure high levels of satisfaction by ensuring that individuals attend the program regularly (or determine why there might be issues with attendance), and that preferences are identified in goals addressing the social, work, and living environments. It is imperative that teams ask themselves important questions such as is assent gained, routinely assessed, and honored? Moreover, does the individual seem happy while in the adult setting?

In recent years, the focus on engagement has altered the way in which quality programs are identified. Historically, there was a common focus on productivity and on compliance. While productivity remains relevant, engagement can become a main focus of intervention. In addition, the quality of interactions with individuals is also highly valued. Providers should focus on engaging the individual first by developing a positive relationship and pairing themselves with reinforcement. Individuals served, like all people, will always respond to genuine respect and regard, and this should be a foundation of service provision.

This value on engagement is consistent with heightened awareness in the field of ABA to ensure that all intervention is humane and compassionate, and that self-determinism is maximized for all individuals. In the context of adult intervention, such qualities can be seen in the extent to which engagement is observable. Some questions can be asked, and some behaviors associated with engagement can be observed.

Engagement is observable when a person is enthusiastically participating in their program. Choice has emerged as a necessary piece of engagement; individuals should be offered a range of meaningful activities from which to select, while still retaining the right to refuse. This is closely related to the Positive Approaches paradigm defined by Guy Legare (2002), who “encourages us to see clearly and honestly the good reasons and adaptive qualities of even the most troubling behavior, no matter whose behavior it is.” Provider agency staff and special education school personnel who excel at this skill set seem to be the ones to whom an individual is a person first, and these professionals never see an individual as a “case” or “set of behaviors.”

Although clinicians have considerable access to different types of preference assessments, as well as training on how to use them, it’s valuable to keep in mind all the factors that influence the efficacy of reinforcers with regards to engagement. For example, an individual may be more likely to be engaged in an activity in which they are participating with others, in a novel location. Engagement is a reinforcer unto itself but requires a deep knowledge of the individual and their preferences as well as focusing on the relationship between the individual and the staff member. As with any other treatment focus, engagement depends heavily on a positive, nurturing, and entertaining relationship between two people.

Engagement has to be individualized so that it can be maximized. It is observable, able to be defined and measured, and important to consider in placement, goal development, and in the ongoing assessment of progress. Programs can follow some general guidelines to increase the likelihood of enthusiastic participation, build active engagement, and foster self-determinism. These concepts include but are not limited to:

  1. Demonstrating unconditional positive regard – Staff and clinicians need to ensure that the individual they are working with is always treated with respect and dignity. Building rapport with each individual and communicating with those individuals regularly is essential to creating a compassionate, humane treatment environment.
  2. Attain Assent – Assent is emphasized in the Ethics Code (BACB, 2022), and should be secured whenever possible. Recent research indicates that this is an area that can improve and can also be done with individuals who are non-vocal (Morris, 2021). The team should ensure that the individual is continually involved in making choices regarding their daily activities. Attain assent for activities, and regularly check in about whether the individual is still willing to do the tasks. Honor withdrawal of assent.
  3. Solicit and accept feedback – Being receptive to feedback means allowing individuals to critique and course-correct staff behavior. Although feedback can be directly solicited, individuals provide feedback in lots of indirect ways as well. It is important to ensure there is reciprocal shaping of interactions between staff and individuals. Being open to changing the approach, based on cues from the individual, allows for the individuals served to have a measure of control over their own treatment, which increases the likelihood they will be enthusiastic participants, and therefore engaged.
  4. Prioritize needs – Staff and clinicians need to ensure that the individual they are working with has their basic needs always met.
  5. Respect all forms of communication – Staff and clinicians need to respect all verbal and nonverbal communication from that individual. These subtleties can be missed if the staff is not paying close enough attention. It’s important to remember that challenging behaviors are often an important form of communication.
  6. Create a supportive environment – An environment where the individual is supported and connected is one where they will be actively engaged, will thrive, will learn, and will master skills and increase competencies. Individuals can get discouraged easily and can become disengaged. In these situations, a little support or assistance can go a long way. Other considerations for a supportive environment could include instruction and activities in novel locations, with persons that are preferred by the individual, and by attending to the individual’s preferences to the maximum extent possible.
  7. Create Novelty – As stated earlier, novelty also helps increase engagement. When educators introduce something new, they provide opportunities for learning skills with a new item. In many cases, exploring a new item (or scenario, song, story, etc.) creates new opportunities for thinking, for understanding how things work, or connecting existing concepts in a new way. Novelty can also allow staff to engage the individual in a new way.
  8. Be willing to share control of the instructional context – Clinicians or staff can ensure that choices are presented as often as possible. There is always a choice to be offered. For example, instead of saying “now it’s time to get dressed”, a staff can say, “Would you rather put on your shirt or your socks first?” It’s also important to find a way to say “Yes” to a request as often as possible. If an individual is asking for something that is unavailable, instead of saying “No,” staff can offer a different time when the item/activity is available. It is important to be as specific as possible.

In summary, if a provider, agency, or special education school wants to increase active engagement while being genuinely helpful, staff and clinicians should partner with the individuals and their team members in selecting goals, developing instructional procedures, and identifying meaningful outcomes. This is the essence of social validity and is essential to compassionate care.

References

Behavior Analyst Certification Board. (2020). Ethics code for behavior analysts. https://bacb.com/wp-content/ethics-code-for-behavior-analysts

Legare, G. (2002). Positive approaches as a paradigm. In Positive approaches: Identifying mental illness in people with developmental disabilities, (2nd Ed.) OMR Statewide Training and Technical Assistance Initiative.

Leiter, M. The psychology of work engagement. Oxford Research Encyclopedia of Psychology. Retrieved 20 Oct. 2022, from https://oxfordre.com/psychology/view/10.1093/acrefore/9780190236557.001.0001/acrefore-9780190236557-e-36.

Morris, C., Detrick, J. J., & Peterson, S. M. (2021). Participant assent in behavior analytic research: Considerations for participants with autism and developmental disabilities. Journal of Applied Behavior Analysis, 54(4), 1300-1316. doi: 10.1002/jaba.859.

Rajaraman, A., Austin, J., Gover, H., Cammilleri, A., Donnelly, D., & Hanley, G. (2021). Toward trauma‐informed applications of behavior analysis. Journal of Applied Behavior Analysis, 55(1), 40-61. 10.1002/jaba.881

Schramm, R. (2011). Motivation and reinforcement: Turning the tables on autism. Pro-ABA.

Tennant K., Long A., & Toney-Butler, T. J. (2022, May 8). Active Listening. StatPearls Publishing. https://www.ncbi.nlm.nih.gov/books/NBK442015.

Citation for this article:

Parenti, K., & Rothman, H. (2023). What is the importance of engagement when working with individuals with intellectual and developmental disabilities and autism? Science in Autism Treatment, 20(01).

About the Authors

Dr. Karen Parenti works as the CEO/Executive Director of Special Friends Foundation.  She has extensive experience in ABA and in developing and overseeing group homes, day services, and rehabilitative programs for individuals with intellectual and developmental disabilities and autism. She also serves as the treasurer of the MAX association’s board where she continues to advocate for the needs of the individuals she serves. Karen earned her Bachelor’s degree in psychology from York College of PA, her Master’s Degree in Human Services Administration from Springfield College in Wilmington, DE and her Doctorate Degree in Clinical Psychology from Immaculata University.

Heather Rothman works as the Director of Day Services for the Special Friends Foundation. She has worked with individuals with disabilities in a variety of settings and roles for over twenty years. Heather is committed to helping individuals with disabilities and Autism access choices, connect with their communities, and design the life they want. She is a Licensed Behavior Specialist with extensive experience with behavior support services in early intervention, school-aged, and adult populations. She designed and built a school-to-work transition program that won an international award for Variety-The Children’s Charity. She has taught at Penn State, developed trainings for the Public Health Management Corporation, and worked with Merrill Lynch on accessibility and community inclusion programs. She is passionate about universal accessibility and designing programs that create strong communities. Heather has her Bachelors of Arts in Organizational Management from Ashford University and a Master’s Degree in Applied Behavior Analysis from Saint Joseph’s University.

This article was reposted with permission from ASAT from https://asatonline.org/research-treatment/clinical-corner/engagement/

A Better Way to Say “No”

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By Morgan van Diepen, M.Ed., BCBA, Co-owner of ABA Visualized

Hearing “no” or “wait” can be challenging for kids of all ages! In fact, as a BCBA, this is one of the most common requests for support that I hear from families. Luckily, researchers have tested out three ways to say “no” when something is unavailable, and the results show how slightly changing our response can actually prevent challenging behaviors! Let’s look at the scenario of a child asking to play a computer game, but the parent is currently using it for work. Which of the three methods do you think was the most effective? 

  1. “No” + Explanation. In this common approach, the parent says it’s not available and gives the honest reasoning: “Not right now. I’m working on the computer.” 
  2. “No” + Explanation + Alternative. Now, we’ve added an extra suggestion of something that is available: “Not right now. I’m working on the computer, but you can play basketball outside with your brother.” 
  3. “Yes” + Contingency. Here, even though our answer is “no,” we’re actually saying “yes!” This can be described as a “yes, when…” statement, where you are describing when the requested item or activity will be available: “Yes, you can use the computer when I’m finished with this meeting at 2:00.” It can also be used to set expectations of what they need to accomplish before the request is available: “Yes, you can use the computer when you finish your homework.” 

So, which do you think resulted in the fewest challenging behaviors?

In this research study, the 2nd and 3rd approaches were equally successful at almost completely preventing vocal protests, aggression, and threats! By just changing the way we say “no,” we can help our learners accept this answer more easily. Little changes that create big results! Strategies like these are perfect for parent training sessions during ABA. Here’s a template parent training goal you could use with families who would like more support in this area:

When (client name) requests for something that is unavailable (provide examples specific to the client), parents will either respond with “No” + Explanation + Alternative (provide example specific to the client) or with “Yes” + Contingency (provide example specific to the client) in attempts to prevent challenging behaviors relating to tolerating “no,” in at least 80% of opportunities across 2 consecutive weeks. 

Looking for a more engaging way to lead parent training sessions and teach effective strategies like this one? Check out our 2nd edition ABA Visualized Guidebook, where we’ve visualized 27 evidence-based strategies (including this one!) as step-by-step illustrations, making behavior strategies easy! 

Article reference: Mace, F. C., Pratt, J. L., Prager, K. L., & Pritchard, D. (2011). An evaluation of three methods of saying “no” to avoid an escalating response class hierarchy. Journal of applied behavior analysis, 44(1), 83–94.

How to Teach Children to Wait

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Reposted with permission from How To ABA

All kids have trouble waiting for things that they want. They even have trouble waiting in line at the grocery store. Waiting is a huge skill. So once our learners have mastered some early instructions, like come here or sit down, then we typically start working on the skill of responding to waiting. Today’s topic is all about how to teach children to wait. 

When my children were young and they started learning how to ride their bikes, they felt a huge sense of independence. I stayed way behind them while they rode their bikes so fast that they were about 20-30 feet in front of me. I needed them to stop at the curb because they were too young to cross the street safely. So something that we worked on was my kids listening to me saying “wait” from 20 feet behind them. They knew to wait for me and stop at the curb before crossing. 

How to Teach a Child with Autism to Wait

Waiting is a huge safety skill and a huge life skill. You don’t always get what you want right away. Being able to wait a little bit of time to get what you want is really important. We also want our learners to stay safe and not run and dart away from adults. So we developed a program about teaching kids to respond to the verbal instruction of “wait,” with the response of waiting quietly.

We want to start really small and with an amount of time that the student can be successful doing. Don’t expect a student to wait for 5 or 10 minutes when they’re used to not waiting at all. Start by having a preferred item that you know that this student wants and then support them in being able to wait. 

Possibly initially say the word “wait” and also hold up your hands and count aloud with the student. Starting with three seconds is a great amount of time and it’s highly supported. Be there with them and help them wait. If they could do that successfully, then you can fade the hands up, and then eventually not count with them. Do all of this while sticking with three seconds. 

Once you fade the signal, you fade the counting, and you’re just saying “wait,” then you would start to slowly increase the amount of time that the student is expected to wait before accessing the preferred item. 

Waiting Program for an Early Learner

Here is an example of the program that we would use for a very early learner. This is a learner who has really only started mastering some basic one-step instructions. Start by teaching the highly supported “wait” with your hands up and counting. You can make it really fun. Sometimes we’ll play red light green light or have a race and tell the student to stop and wait. It doesn’t have to be done just at the table. 

Do 10 trials of the first teaching step and graph it. They can be in a row or they can be spread out over time. They can also be done naturally. As soon as they are able to show mastery (80% over two consecutive sessions) you increase the amount of time the learner waits and so on. 

Waiting Program for an Older Student

A waiting program for an older student who needs to learn to wait before accessing something that they really, really want isn’t as highly supported. 

The first step would be to have the learner sit and wait for something that they want. We’d start with five seconds before giving them the reinforcement. As soon as they’re successful for two intervals in a row over two days, then we increase the time. 

Go at the pace of the student and if the student shows that 10 seconds is too long, go back to five seconds. 

Check out the How To ABA website for additional resources and free downloads.

About the Authors

Shayna Gaunt, MA, BCBA | With over 20 years in the field of ABA, Shayna is a master program developer. She has a unique knack for finding the practical application of ABA to real-life so that the interventions are doable and successful!

Shayna has been practicing Applied Behavior Analysis (ABA) since 1997. In 2005, after graduating with a Masters Degree in ABA from the University of Nevada Reno (UNR), she was one of the first in Ontario, Canada to obtain her BCBA. She is the Founder and Executive Director of Kid Mechanix, Inc. in Toronto, Canada, where she met Shira Karpel.

Shayna also has international experience, providing clinical expertise and training workshops to clients in Canada, United States, Costa Rica, England, Egypt and Qatar.

Because of her extensive training in a wide variety of interventions over the years, Shayna has a knack for developing unique, practical programs that teach across operants. She seriously thinks in data sheets!!!!

Shayna’s super-power is her ability to explain complex ABA principles in practical, relatable terms. She is a master program-developer and most of what you see in The Bx Resource is her ABA-mind put down on paper.  As a member of The Bx Resource, you get the privilege of learning from her and leveraging all that ABA knowledge for your own practice!

Shira Karpel, M.ED, BCBA | As a former teacher, Shira is passionate about spreading the benefits of ABA to more children.  She envisions a world where ABA is the go-to, accepted intervention in classrooms and homes everywhere!  She is the co-founder of How to ABA which was started to create a community where all BCBAs and ABA professionals can get support and resources so that clients can get the best treatment possible.

Shira has a Masters in Special Education and then went on to pursue her BCBA.  With extensive supervision and training (ahem, thanks Shayna!!), she has been working in the field of ABA since 2011.  Together with Shayna, they trained, and taught many therapists, clients, and parents and collected a massive bank of ABA programs and resources.  One day, the light bulb went off and Shira said, “We should be sharing all of this!” Hence, How to ABA was born!

Her passion is in creating positive, comprehensive learning environments for all students.  She loves that with her knowledge in ABA, she can now support teachers in their classrooms.  She is the Director of Behavioural Services at a private school in Toronto and is loving getting to make a difference in the lives of children and families daily. She is passionate about making the principles of ABA practical and doable and relevant to every child in any situation.

Self Care for Moms

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By Leanne Page; originally posted on Parenting with ABA

When you hear the words “self-care”, what is your reaction? A sigh of relief? Rolling your eyes as it feels like just ONE. MORE. THING.?

As a busy mom, we’ve all heard the expression to put your own oxygen mask on first. But when are we supposed to do that?

Self-care doesn’t have to mean bubble baths and beverages. It doesn’t have to mean shopping or pedicures. So what the heck does it mean then?

The World Health Organization defines self-care as “the ability of individuals, families and communities to promote health, prevent disease, maintain health, and to cope with illness and disability with or without the support of a healthcare provider”.

And the American Psychological Association says “Self-care has been defined as providing adequate attention to one’s own physical and psychological wellness. Beyond being an aspirational goal, engaging in self-care has been described as an “ethical imperative”.”

Self care means paying attention to your own wellness- emotional, physical, and psychological. How are YOU doing right now? And the question you’ve heard me encourage you to use before- 6 little magic word: What do you need right now?

Quick and easy ways to improve your physical self-care:

  • Drink more water. Make this easier by using habit stacking. This means take an existing habit and add the step of drinking a glass of water on top of it. In ABA speak, the existing habit becomes the SD for drinking water. When I turn on my coffee maker in the morning, I drink a big glass of water while the coffee machine heats up.
  • Sleep hygiene. Turn off screens earlier in the evening. Go to bed earlier. Remove distractions. Journal before bed. Whatever works for you to promote good sleep!
  • Eat healthy. Instead of focusing on removing certain foods from your diet, just add in one healthy thing a day- like a fruit or vegetable. Habit stack by adding a piece of fruit to your afternoon cup of coffee, tea, or water.

Quick and easy ways to work on your emotional & psychological self-care:

  • Gratitude practice. There is SO much research on the benefits of gratitude practice for your mental health. This doesn’t have to be time consuming or involved. Habit stack by thinking about one thing you are grateful for every time you brush your teeth. Or ask every member of your family what they are grateful for each day (or call it a happy thing or a good thing) every time you all sit down at the kitchen table together.
  • Insert a pause. Just a simple pause throughout your day can help! When you are starting to feel emotionally heightened, pause and take some deep breaths. Insert this pause before you react to your kids or something else. Just giving yourself that moment to breathe and collect your thoughts can be wonderful for your self-care!
  • Schedule alone time. Work with your partner or support system to have a standing date with yourself on the calendar. It may be 20 minutes to sit on the back porch or an hour on the weekend to go to a yoga class. Whatever works for you! Put it on your calendar and treat it like an important appointment. It is important!

If you like bubble baths and wine- feel free to use it for your self-care. But that’s not all that matters! What matters is that you find a way to give yourself a little breather from the mental load of motherhood.

Prioritize yourself- even just in small increments. Learn something new, try a new hobby, read a book, exercise. Find what works for YOU and schedule time for it. Guard that time as an important appointment because you are worth it.

What small ways can you incorporate more self care into your days this week?? Try something and let me know how it goes!

Leanne Page, MEd, BCBA, is the author of Parenting with Science: Behavior Analysis Saves Mom’s Sanity. As a Behavior Analyst and a mom of two little girls, she wanted to share behavior analysis with a population who could really use it- parents!

Leanne has worked with children with disabilities for over 10 years. She earned both her Bachelor’s and Master’s degrees from Texas A&M University. She also completed ABA coursework through the University of North Texas before earning her BCBA certification in 2011. Leanne has worked as a special educator of both elementary and high school self-contained, inclusion, general education, and resource settings.

Leanne also has managed a center providing ABA services to children in 1:1 and small group settings. She has extensive experience in school and teacher training, therapist training, parent training, and providing direct services to children and families in a center-based or in-home therapy setting.

Leanne is now located in Dallas, Texas and is available for: distance BCBA and BCaBA supervision, parent training, speaking opportunities, and consultation. She can be reached via Facebook or at Lpagebcba@gmail.com.

ASD Learners and Sexuality

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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.

Resources:

https://researchautism.org/sex-ed-guide/

https://www.autismspeaks.org/sites/default/files/2018-08/Puberty%20and%20Adolescence%20Resource.pdf

https://www.autismspeaks.org/recognizing-and-preventing-sexual-abuse

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

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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 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

Practical Applications to Culturally Sensitive Treatment – Part I

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By: Nicole Gorden, M.S., BCBA, LBA 

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.

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 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

Do You Want to be the Bringer of the Grins or the Bringer of the Power Struggles?

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This week’s blog comes from Parenting with ABA by Leanne Page.

Do you know what one of my favorite parenting tools is?

You guessed positive reinforcement, didn’t you? Close- but today I’m going with HUMOR!

When things are tense- can we help ourselves and our kids to crack a smile to defuse the situation?

When my kids are in a bad mood, it’s easy for me to slip into traditional kneejerk parenting reactions. It’s easy to become overly firm and frustrated. This is when voices rise. Tempers rise. Power struggles begin. Who exactly is winning here? I’m not happy with my own behavior following a tense interaction let alone my kids’ behavior.

What if instead of getting firm we got silly? Can we salvage the situation, the morning, the day? I say HECK YES!Mornings can be hard for so many families- mine included. Getting up on time to get out the door by 7:30am for elementary school is not easy for my oldest. After a few rough days of trying all kinds of different things to just get my girl out of her funk, I hit the jackpot. Instead of being firm in the form of “You do it or I’ll help you do it” through the morning routine, I opted for humor. My girl was grunting and moaning and making all kinds of unpleasant noises instead of doing her morning routine. I asked our smart home thingie “Hey google, can you translate cave man talk?” and “What does (insert grunting noises here) mean in English?” I communicated back to my daughter in cave man grunting noises. She cracked a smile. I turned up the silly drama with noises and gestures to communicate to her what she needed to do next in her morning routine. And guess what! It worked! Not only did it work that day but as soon as I started pantomiming things or making silly noises the next day- a grin! Mornings got smoother for several weeks without me even needing to help her do her routine. Then one day, she had a hard time again. Instead of kneejerk over firm parenting tactics, I tried humor. And it worked like a charm!

When else have you heard me sharing about being silly? In getting our kids’ attention before giving an instruction. Try talking in a silly voice, singing, whispering, or rapping. Try silly faces and hand gestures to act out what you need them to do. Get their attention before giving an instruction but also get a smile as you are interacting with your kids!

Get that grin and helping your kids follow through is a million times easier!

And the best part of all- laughing together helps that highly desired true connection with your kids. Not only does it defuse a situation or help them follow instructions- it strengthens your relationship. It helps your kids to feel safe and secure with you- you are the bringer of the smiles, not the bringer of the threats of punishment or the bringer of rasied voices and power struggles.Next time you feel your own temperature rising because your child is not listening, pause. Try hard to use some humor. The first time or two it really is HARD because your instincts are to be firm and stand your ground no matter what. But breathe and consider the big picture. Do you want your kids to think of you as the bringer of the smiles or the power struggles. Be silly. Get the smiles. Then the instruction following is easier. Save the situation and also strengthen your relationship.

Embrace the silly!

Leanne Page, MEd, BCBA, is the author of Parenting with Science: Behavior Analysis Saves Mom’s Sanity. As a Behavior Analyst and a mom of two little girls, she wanted to share behavior analysis with a population who could really use it- parents!

Leanne’s writing can be found in Parenting with Science and Parenting with ABA as well as a few other sites. She is a monthly contributor to bSci21.com, guest host for the Dr. Kim Live show, and has contributed to other websites as well.

Leanne has worked with children with disabilities for over 10 years. She earned both her Bachelor’s and Master’s degrees from Texas A&M University. She also completed ABA coursework through the University of North Texas before earning her BCBA certification in 2011. Leanne has worked as a special educator of both elementary and high school self-contained, inclusion, general education, and resource settings.

Leanne also has managed a center providing ABA services to children in 1:1 and small group settings. She has extensive experience in school and teacher training, therapist training, parent training, and providing direct services to children and families in a center-based or in-home therapy setting.

Leanne is now located in Dallas, Texas and is available for: distance BCBA and BCaBA supervision, parent training, speaking opportunities, and consultation. She can be reached via Facebook or at Lpagebcba@gmail.com.

A Spotlight On: “Executive Function in the Early Childhood Classroom”

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By: Stephanny Freeman, PhD and Kristen Hayashida, MEd, BCBA. Their new book: “Executive Function in the Early Childhood Classroom” can be purchased HERE

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:

  1. Working memory: holding information in mind to manipulate, work with, or act on at a later time.
  2. Inhibitory control: the ability to regulate one’s attention, behavior, thinking, and emotion particularly in response to distractions or temptations.
  3. 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:

  1. 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.
  2. Fluency: how fluidly one can access and use relevant knowledge or skills.
  3. Planning: the ability to identify and sequence all the different steps needed to achieve a specific goal.
  4. Organization: the capacity to prioritize and make decisions about which tasks to undertake, and the needed resources to complete those tasks.
  5. Problem solving: carrying out the steps to achieve a desired goal, while monitoring progress making necessary adjustments.
  6. 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.
  7. 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.

Focus on Generalization and Maintenance

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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:

  1. 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.)
  2. 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.
  3. 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.