Adapting Swim Lessons for ASD Learners

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By Jen Knott, BS Recreation Therapy

Swimming is a whole-body skill and oftentimes challenging for individuals with autism to master. It requires the use of your arms, legs, core, breathing, spatial awareness, sensory regulation, as well as strength, endurance, motor planning and coordination.

When designing swim lessons for swimmers with autism, working on all the skills listed above via structured activities allows the swimmer to enhance their brain/body connection in many different movements. This approach assists in skill mastery at a faster rate. Specifically, it allows the individual to practice motor planning and strengthening skills such as crossing midline, coordinating arms and legs at the same time, and using arms in a reciprocal motion.

The more individualized, creative, and motivating you can make the activity, the better! Below are some specific actions that can be taken to help acclimate your autistic learner to the basics of swimming!

For example, floating in supine position (on your back) is an essential safety skill that all swimmers should learn. There are many creative ideas to work on this skill, and some can even be done at home! Laying on your back can be an unpreferred skill at home and while sleeping due to the changes in the position in the inner ear. Floating can feel very different to swimmers with autism and they often demonstrate a resistance to the position. Taking small steps in a variety of settings to introduce this skill is key.

  • Laying on your back on the bed, floor, or couch provides a similar feeling to floating with support.
  • Having a child’s head slightly off the couch or bed can also provide the feeling of floating and locating their body in space.
  • In the bathtub you can work on this skill by having swimmers lay on their backs while putting their head back in the water or looking up at the ceiling. This can be done while seated or lying down, any progress is a step in the right direction.
  • Placing one ear at a time in the water can be helpful to slowly introduce the feeling of the water.  We often use songs like Twinkle, Twinkle Little Star, Humpty Dumpty, and counting to assist in distraction from the water in ears and also provide a clear ending to the skill when the song ends or counting reaches 10.
  • You can also place items on the swimmer’s stomach for postural and tactile support that provides input and focus for the swimmer on something other than the feeling of the water in their ears.  
  • In the pool, start with laying in a zero depth entry pool at the entrance, move to looking up in a seated position, and then transitioning to a supine position over time can help ease into it. Often having a hard, grounding surface beneath them can provide the feedback needed, to make the position more comfortable.  
  • Mats, noodles, floatation devices, and neck floats are a few examples of equipment that can be used to assist in floating in the supine position.  
  • Swimmers can also hold onto the side of the pool and work on looking up at the ceiling or preferred object. Allowing the swimmer to control the speed and amount of water they place their head in can give a sense of control and comfort.
  • This can then be shaped into leaning back to place their head on parents or instructors shoulder, providing support at the lower back, shoulders, and head. Fading support is important when the swimmer is ready, providing support just at shoulders and head, then just the head, then independently floating!

These techniques can also be used for submerging under water and floating in prone (on your stomach) position, taking it slow, using motivating items to look for under the water, slowly introducing water to body parts, singing songs or counting, providing tactile support and fading it out when the swimmer is ready. Other activity ideas to complete in the water to develop and practice planning and strengthening skills would be jumping jacks, toe touches, jumping and splashing at same time, swinging a tennis racket or barbell across midline under water, reaching across body or reciprocally overhead for items, and pushing barbells reciprocally. Providing adaptations, creativity, and flexibility is key in all swim sessions for success. Using motivating items, playing games, providing a picture schedule, video modeling, accommodating for any sensory needs, and making the skills fun can help your swimmer succeed with even the most challenging swim skills! 

Jen Knott, CTRS (Certified Therapeutic Recreation Specialist)

Jennifer is a graduate of Kent State University with a degree in Leisure Studies, with a concentration in Recreation Therapy and a minor in Psychology. Jennifer began Rec2Connect in 2009 with 2 clients. She launched the Rec2Connect Foundation in 2014. Her previous experience includes: Classroom Behavior Therapist at Cleveland Clinic Center for Autism, Job coach at Goodwill Industries, Volunteer in Aquatic Therapy at Hattie Larlham in the Physical Therapy Department and Recreation Therapist at the Cleveland Clinic.

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One Autistic BCBA’s Perspective on ABA

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By: Michelle Zeman, MA, BCBA

Board Certified Behavior Analysts (BCBAs) often work with the Autistic community. However, you may not often run into an Autistic BCBA. There are Autistic BCBAs who support and have a career in Applied Behavior Analysis (ABA), and as one I would like to share my perspective.

This field gets a bad reputation for many reasons. It’s claimed that ABA “masks Autistic behaviors” as well as “teaches children to be robots”. I hate the reputation that proceeds today’s ABA; however, if you look back at how ABA was conducted in the 1960s, there’s enough rationale to support.  We must condemn the actions of rigid and uncompromising ABA while changing current stands, as I attempt to do in my practice. Therefore, my perception of ABA is taken into 3 points: (1) using a trauma-informed lens, (2) actively listening and validating our clients, (3) individualizing care.

  1. When we use a trauma-informed lens, it means that we are not just looking at behaviors from the 4 functions. Rather, we look at behaviors that happened because of traumatic experiences. In my own life, I got into a car accident when I was 16 years old. I was already semi-emotional, and I was driving in the rain (it was sprinkling). I was turning left at a green light and overcorrected, thus hitting another car. I was so traumatized by the experience that I couldn’t stand the thought of going behind the wheel for 4 years. What motivated me to get behind the wheel again was the fact that I was sick and tired of my mom and my friends having to drive me around. If anyone would have forced me to comply by making me drive from place to place, there’s a not insignificant  chance that another car accident would take place. Likewise, when we force clients to attempt things they are not ready for, we risk traumatizing them.
  2. Active listening and validating our clients, as well as their caregivers, is vital in this field. Practitioners are not always right (even Autistic ones!), and we must approach in situation with humility and compassion. RBTs implement ABA therapy at their full ABA therapy hours. BCBAs go out anywhere between 5 and 20% of an RBT’s direct therapy hours per month. Then, we have our caregivers, who are with the client when we are not. When emphasizing compliance over collaboration, active listening and validation is thrown to the wayside. We have many elements that we must consider when implementing services, such as trauma, culture, environment, and feasibility of interventions. If we run into issues, we accommodate while doing our due diligence.
  3. Perhaps the third point is the most important – individualizing care. When I was a Clinical Director, I was strict when report reviews. However, I was strict because I wanted to make my analysts place themselves in their client’s shoes. For instance, I have seen vocal and motor stereotypy in several reports with a function of automatic reinforcement. Granted, each of these behaviors are different across each client we work with, but I still ask for rationale for how these behaviors are socially significant to reduce. If I notice the rationale does not fit the criteria, I will say “remove this behavior as it is not socially significant, does not impede the client’s ability to access contingencies, and it is not harmful to themselves or others”. I’ve also had clients ask me to write in specific goals they want to work on in their treatment plans too – for instance, I had a client who told me “Michelle, I want to work on becoming organized.” I wrote in a goal that fit the medical necessity model, but also targeted what the client wanted to work on.

These 3 areas have shaped me into the BCBA that I strive to be. Though I am one Autistic human being, I strive to ensure that I can be a compassionate practitioner. That’s what our clients deserve.

About the Author:

Michelle Zeman, MA, BCBA is an Autistic Board Certified Behavior Analyst based out of Orlando, FL. She has been in the field since 2013, and a BCBA since 2016. She has worked with Autistic clients between ages 2-17, providing client-centered, trauma-informed, and compassionate care to all families. Michelle has worked in-home, in school, in center, and in the community with clients to help achieve her clients’ goals. In her free time, Michelle likes to spend time with her two pugs (Milo and George), ride rollercoasters, go to drag shows, and binge watch RuPaul’s Drag Race.

Posted in ABA

Crafting Connections

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By: Tameika Meadows, BCBA from I Love ABA

Impairments in social communication are a key deficit of Autism, and can be seen across the varying range of the spectrum.

Social communication is a big word that can include many difficulties, such as making friends, maintaining friendships, being appropriate near peers, sharing or turntaking, empathy or perspective taking, initiating peer play, joining ongoing peer play, responding to peers, self-advocacy, conflict-resolution, getting AND keeping a job, etc. 
When clinicians throw around the term “social skills”, we are really talking about a lottttt of skills!

Some people have the mistaken belief that ABA therapy only focuses on 1:1 instruction, and therefore isn’t appropriate to target peer social interaction. Nope, not true.
ABA therapy can absolutely include targeted social skills instruction. Depending on the age of the learner and their specific social deficits, that will impact how social goals are assessed and selected. 

Parents of very young children usually want to work on: sharing, playing with peers instead of isolating, playing with toys instead of hoarding toys, reducing aggression towards peers, etc.

Parents of teens or young adults usually want to work on: initiating conversation, increasing MLU (jargon translation= you want your child to use more than 1-2 words to make a statement or answer a question), buying items in the community, talking to community helpers (e.g. a police officer), going on job interviews, assertiveness, dating, etc.

There are also many ABA programs that offer formal social skill groups to families, where learners are grouped together based on interests, abilities, age, or other factors, to participate in games and activities as a group. But the games are far more than just “games”, they are actually carefully designed to target specific social skill deficits. If you are already receiving ABA therapy services, ask if your child can participate in a social group with other clients.

Behavior Analysis has many empirically validated strategies to add to the social skills conversation, and also (depending on the funding source) the ABA provider can target social skills in a group format, at school, or out in the community, to ensure proper generalization. For example:

  • Reinforcement for the win! Social skills training should include reinforcement individualized to the learner, and also should work to pair (transfer) reinforcement to peers, as pre-intervention the learner may not find interacting with peers to be all that fun ;-(
  • Data collection. If no one is collecting data, reviewing that data, and evaluating that data to make treatment decisions then what is happening is not ABA.
  • Generalization. Also known as, “real life”. Learning social skills in the ABA clinic, or at school, or on the playground, will not necessarily generalize to other settings and other kids. Intentional generalization into real-world, real life scenarios is a must.
  • Structure. This may sound weird, but it does NOT mean that the learner must do the same thing, in the same order, for each peer interaction. It means that the learner should be able to predict what will happen in social group today, they know the rules of social group, and they understand what rewards they contact during social group. These things should be somewhat predictable, from the perspective of the learner.
  • Break down concepts visually or tangibly. Help learners understand abstract concepts through video modeling, games, visuals, or manipulatives, that they can touch, see, etc.
  • Follow an evidence based curriculum…..just not too closely. While it is important to have a tool to create the lesson plan for social instruction, I’d also recommend individualizing the curriculum as much as possible across learners. Modifying the curriculum to make the content more relevant to the learner will go a long way to helping social instruction gains “stick”, and be salient for the individual receiving intervention.
  • Behavior management. So obviously, challenging or disruptive behaviors will interfere with learning during social interaction time. These behaviors can also frighten, intimidate, or confuse other peers present, which works against the goal of interacting with peers. This is why ABA providers are a qualified to implement these kinds of interventions, because we already have the tools to decrease inappropriate behaviors and increase appropriate behaviors, and keep the social interaction on track.

*Resources:

Mission Cognition
Crafting Connections (I love this book!)
Social Skills Training for Youth with Autism Spectrum Disorders, Otero, Tiffany L. et al. Child and Adolescent Psychiatric Clinics, Volume 24, Issue 1, 99 – 115
A Review of Peer-Mediated Social Interaction Interventions for Students with Autism in Inclusive Settings, Watkins, L., O’Reilly, M., Kuhn, M. et al. J Autism Dev Disord (2015) 45: 1070
Making & Keeping Friends
Baker, J.E. (2004). Social Skills Training: For Children and Adolescents with Asperger Syndrome and Social-Communication Problems. Shawnee Mission, KS: Autism Asperger Publishing Co.

https://difflearn.com/products/crafting-connections-1

About The Author: Tameika Meadows, BCBA

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

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

This piece originally appeared at www.iloveaba.com. 

Posted in ABA

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.

Special Needs Registries to Inform First Responders

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By: Cassie Hauschildt

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

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

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

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

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

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

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

Autism Early Intervention and Joint Attention

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By: Rose Griffin, SLP, BCBA

There is a strong bond between joint attention and both receptive and expressive language skills. When we work on joint attention, we are showing that our learners’ communication is powerful! I am sharing a few tips and ideas that I use to build connection before communication while working on joint attention goals.

These activities involve shared activities through playing with toys, singing songs, and reading books. It is okay if your student isn’t ready to fully engage when you introduce these activities, note their baseline data and move forward with goals. You will be amazed to see the transformation and excitement over these simple activities.

Toys:

Playing with toys in therapy is all about creating an interaction in a semi-structured environment. Remember to use simple language and allow for natural curiosity and play and not bombard with questions. 

Examples of toys I love to use:

  • Car and car track
  • Mini Objects
  • Farm Set

Literacy:

Build excitement around the book, use books with repetition, and if your kids like it try an animated voice which can be really fun.

A few books I love to keep in my therapy bag that are a great success for joint attention are, Pete the Cat and his White Shoes, Brown Bear, The Very Hungry Caterpillar, and Chicka Chicka Boom Boom.

Music:

Students love songs, they are familiar, and create engagement. I also love to use visuals that can be just laminated pictures or little toys that match the activity of the song. It can also be engaging to sing songs that have motions for the words.

Songs I love:

  • Old Macdonald
  • Wheels on the Bus
  • Head, Shoulders, Knees, and Toes

It can be difficult to keep data and set goals around these abstract ideas, be sure to check out my goal bank on ABA speech. I hope you love these ideas and get use out of them in your next therapy session! 

Rose Griffin, SLP, BCBA is dedicated to helping SLPs and other professionals provide systematic language instruction with ease. Working with students with autism and other complex communication disorders can be challenging. Rose has dedicated herself to helping by providing professional development and real life examples of what she does in her daily practice. See her podcast, blog, and collaboration opportunities at www.abaspeech.org

Posted in ABA

Spotlight: Responsible & Responsive Parenting in Autism: Between Now and Dreams

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By: Shahla Ala’i-Rosales and Peggy Heinkel-Wolfe

At one time there were very few avenues available to the increasing number of families receiving autism diagnoses for their children. In the 1960s experimental psychologists took a new direction to improve the quality of life for people on the autism spectrum and their families.  Their work in behavior intervention began as a treatment for people society had neglected.  Little did they know that it created a market.

Their success resulted in a new way of approaching autism that can bring lasting change when services are delivered with intention, skill, effort, and love. Today, autism services are widely available. These services have also become a multi-billion-dollar industry, where a child’s disability risks becoming a business opportunity.

But we can minimize that risk. First, we can ground ourselves in ethical principles and the science of learning. Then, we can remember the power that families have had all along: love. Responsible and Responsive Parenting in Autism: Between Now and Dreams offers timeless guidance as it answers three essential questions: What do you need to know? Who will help you? How can love be your compass?

Prior to the publication of this book, the authors have been friends, colleagues, and allies for 30 years. Shahla’s expertise as an applied behavior analyst and years of clinical work inform this book. Peggy is the author of See Sam Run: a mother’s memoir of autism, winner of a Mayborn Nonfiction Prize.

Together, they have collected meaningful stories from their own experiences and from others on the journey. The stories focus on how family members can understand the scientific principles behind autism services, how parents and professionals can best help and respond to their child and each other, and how they can bring meaning to all of their interactions.

All parents have a responsibility to raise their children with autism as best they can. Parents cannot sidestep this journey. This work is part of how we all develop as humans—nurturing children in ways that honor their humanity and invite full, rich lives. Between Now and Dreams provides the roadmap for a joyful and sustainable journey. The essence of this journey relies on three powers; learning, connecting, and loving. Each power informs the other. Each amplifies the other. And each power is essential for meaningful and courageous parenting.

Shahla Ala’i-Rosales is an Associate Professor int he Department of Behavior Analysis at the University of North Texas. She has taught courses on ethics, early autism intervention, parent training, behavioral systems, applied research methods, technology transfer, and behavior change techniques. She has served on several boards and disciplinary committees and has published and presented research on social justice, ethics in early intervention, play and social skills, family harmony, and supervision and mentoring. Shahla has more than four decades of experience working with families and has trained hundreds of behavior analysts. She has received awards for her teaching, her work with families, and for her work in the community.

Peggy Heinkel-Wofle‘s first book, See Sam Run, a mother’s story of autism, was originally published in 2008 by the University of North Texas Press. The book’s manuscript won the Mayborn Prize for Literacy Nonfiction in 2005. For more than a decade, she has been exploring themes in autism parenting and self-determination on her blog, peggyheinkelwolfe.com. An award-winning writer and journalist, Peggy holds a master’s degree in journalism from the University of North Texas and a master’s degree in music performance from the Eastman School of Music.

Posted in ABA

Building Partnerships

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Written By: Dana Reinecke, PhD, BCBA-D

Two people examine some graphs together.  They discuss the trends and variability in one graph, and troubleshoot ways to improve the pattern so that the child engages in a higher rate of mands (requests for desired items), with the expectation that this will reduce distress and improve independence and participation in family and school activities.  A child scoots by (literally, on a scooter), through the kitchen, giggling while another child jogs behind, also giggling.  The two adults stop to watch the kids for a moment, and exchange a smile and then return to their discussion.

Would it be surprising to know that one of the adults is a BCBA?  Probably not. The graphs and discussion kind of give it away.  Who is the other adult?  An RBT?  A consulting BCBA?  A trainee who is engaging in some unrestricted supervision activities?  Any of these make sense, but in this scenario, the other adult is the parent of both children, one of whom is receiving ABA services to increase manding.

This scene is a common one for BCBAs working with children, who regularly and comfortably consult with a parent or caregiver of each client regarding many components of programming (for the purposes of this article, the term “caregiver” will be used to include parents and anyone else who may take on the roles described here).  These components include type and results of assessment; goal selection; choice and definitions of behavior targeted for increase or decrease; strategies used for effecting behavior change; and as described above, data analysis and outcomes.  Ideally, there is also the opportunity to share celebrations of accomplishments, discuss the impact of treatment on the whole family, and address any other areas that may overlap with the BCBA’s role in the family.  This regular sharing of information can be approached as a partnership, entered into by people who care about the child, in the best interests of that child.

Partnership is a two-way street, requiring both the professional and the caregiver to prioritize and facilitate the relationship.  Depending on the funding source, there may be a third party impacting time and availability of resources for this relationship.  Even with limited formal “hours” for working with caregivers, however, the development of a partnership is a necessary and rewarding piece of any effective behavioral programming.  As in any partnership, negotiations must occur to arrive at the ideal situation for both parties.  Let’s take a look at some areas of consideration.

  • Scheduling is an obvious important piece of the partnership.  The caregiver and the behavior analyst should establish a mutually agreeable, regular time for connection, with clear boundaries that will help to maintain professionalism and manage both parties’ expectations.  Caregivers might not be able to connect during their work day, and BCBAs might have families of their own to spend time with after hours. Working together to identify times when caregivers are able to speak with the behavior analyst without work or other family demands helps to reduce missed opportunities to work effectively together.  Similarly, the professional party should be clear about when they are and are not available, so that caregivers can plan accordingly to be available and ready with questions and points for discussion.
  • In addition to when to meet, the place for meetings might be negotiable.  If telehealth (video or phone conferencing) is possible given the funding structure, this may add a layer of flexibility that can be beneficial to both caregiver and provider.  If telehealth is not available, it might be appropriate to think creatively about where meetings happen.  For example, the caregiver might welcome the opportunity to meet outside the home, so that they can freely discuss concerns without their child hearing.  Alternatively, if the professional can meet in the home, that might allow for better participation of more members of the family. 
  • Means of communication is another important area to consider.  HIPAA-compliant email or texting services may be more efficient and helpful for some caregivers, or may present a burden for those who are not as comfortable with technology.  Both parties may be comfortable with phone calls, but there should be some guidelines around when phone calls might not be answered or if it is preferable to schedule phone calls at mutually agreeable times rather than “cold calling.”
  • The areas around which partnership occurs should also be a topic of discussion, especially at the beginning of the working relationship.  The caregiver rightly should expect the BCBA to be the “expert,” but only in the area of behavior analysis.  The caregiver is actually the expert in their child, so they should expect to have a big role at every stage of assessment and intervention.  The professional’s role is to provide guidance and advice, based on their prior experience, education, and the published best practices in the field.  It is up to the caregiver, however, to provide sufficient information, guidance, and input to the professional so that programming is tailored to best meet the needs of the child and the family.  It is also often up to the caregiver to carry out interventions and provide generalization opportunities to complement formal sessions.

With mutual respect, partnership occurs easily and naturally.  One way to facilitate partnership is to approach each other with curiosity and humility.  The caregiver should assume that the behavior analyst has valuable information to offer, and the behavior analyst should assume the same about the caregiver.  Another important way to build partnership is to communicate openly and honestly.  If the behavior analyst proposes goals or interventions that are not comfortable or possible for the family, the caregiver should freely express their reservations.  The behavior analyst needs to make space for this feedback, and be receptive to it.  The caregiver should also be receptive to the behavior analyst, and assume that recommendations are based on best practices and in the best interest of the child and family.  Finally, even the best partnership needs to be nurtured.  Providers and caregivers should create opportunities to check in with each other about their relationship, and to make adjustments as needed regarding expectations and needs.

The provider and the caregiver will be much more helpful to the child they both care about together, than apart.  The little kid scooting around his house is lucky to have a team of people working together to help him live happily, safely, and independently, and the team is lucky to have each other in this important work.

About The Author

Dana Reinecke, Ph.D., BCBA-D is a doctoral level Board-Certified Behavior Analyst (BCBA-D) and a New York State Licensed Behavior Analyst (LBA).   Dana is a Core Faculty member in the Applied Behavior Analysis department at Capella University.  She is also co-owner of SupervisorABA, an online platform for BACB supervision curriculum, forms, and hours tracking.  Dana provides training and consultation to school districts, private schools, agencies, and families for individuals with disabilities. She has published her research in peer-reviewed journals, written chapters in published books, and co-edited books on ABA and autism.  Current areas of research include use of technology to support students with and without disabilities, self-management training of college students with disabilities, and online teaching strategies for effective college and graduate education.  Dana is actively involved in the New York State Association for Behavior Analysis (NYSABA).

Posted in ABA

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