Tag Archives: parenting

Review of Responsible and Responsive Parenting in Autism: Between Now and Dreams

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Reviewed by David Celiberti, PhD, BCBA-D and William L. Heward, EdD, BCBA-D
Association for Science in Autism Treatment

This month’s ASAT feature comes to us from Executive Director David Celiberti, PhD, BCBA-D, Association for Science in Autism Treatment and William L. Heward, EdD, BCBA-D, Professor Emeritus, the College of Education and Human Ecology at Ohio State University. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!

Parents of children with autism face many challenges beyond those directly associated with raising a child who may have a myriad of needs. They face a dizzying array of treatment options with interventions lacking any scientific basis, which are cleverly marketed and often eclipse those interventions enjoying scientific support. Access to qualified, compassionate providers may be difficult or delayed, particularly for children in rural communities, children of color, individuals who age out of the educational system, and families outside of the United States. Misconceptions and misinformation about autism and ways to help people with autism abound and those messages often distract and derail many parents from obtaining accurate information, support, and intervention. Parents who seek help for their children are often harshly criticized and labeled by some bloggers as lacking love or acceptance. Taken together, these realities can weigh heavily on parents who are just trying to help their children with autism develop independence and purpose, pursue their dreams, and live their best lives.

Fortunately, a new book provides a break from the vitriol, snake oil, and antagonism. Between Now and Dreams thoughtfully and artfully explains the complementary concepts of responsible and responsive parenting of children with autism. It provides a space for parents to reflect, to engage, and to look ahead.

Prior to offering details about this book, the first reviewer would like to share some background. I first met Shahla Ala’i-Rosales and Peggy Heinkel-Wolfe thirty years ago at the University of North Texas (UNT) when I was a newly hired Assistant Professor in the Department of Psychology. Shahla was a behavior analyst, researcher, and practitioner in early autism intervention; Peggy, the mother of a son with autism, held an administrative job at the University. With a few other UNT colleagues, we formed a small working group to support each other in our individual efforts as well as to develop a community in which future collective efforts could take root. My time at UNT was brief, but I am so pleased (and a tad jealous) to know that Shahla and Peggy continued to collaborate and form a long-term friendship and professional alliance. Their book, Responsible and Responsive Parenting in Autism: Between Now and Dreams is a timely, and much needed gift to the autism community. Ala’i-Rosales and Heinkel-Wolfe share a series of interrelated events – challenges, plans, setbacks, and victories, large and small – in the lives of real children and their families (including their own). These stories demonstrate the importance of recognizing and celebrating children’s capabilities while encouraging and nurturing their self-actualization, individuality, and independence.

The authors put forth that raising a child with autism with an abundance of joy, purpose, and serenity relies on three interconnected powers: learning, connecting, and loving. Although the authors state that these powers are interconnected and that they influence and strengthen each other, Ala’i-Rosales and Heinkel-Wolfe have used them to organize their book into three unique parts. Each part is composed of several chapters; each chapter opens with a thoughtful quote that sets the stage for the lessons and wisdom that follows.

Part One: The Power of Learning  

Between Now and Dreams opens with a section devoted to principles of learning and how those principles can guide parents’ efforts to help develop their child’s fullest potential. The authors stress the need for creating and implementing carefully planned, intensive, positive applied behavior analysis (ABA) interventions in the home to keep children learning and moving forward in their lives. The abundance of examples discussed throughout this section showcase the vast applications of the science of behavior. Parents who are new to the autism journey will gain comfort in learning about principles that can be readily incorporated into their daily lives and appreciate a shift away from resolving problems to one of promoting empowerment and skill building, both for themselves, as well as for their children.

This section also chronicles the journey of ABA from its early applications to autism treatment, and to what the discipline has become today. The authors provide a sensitive and honest discussion of the bumps along the way.

Part Two: The Power of Connecting

This section of Between Now and Dreams will be invaluable for caregivers who may struggle with feelings of isolation, associated with both raising a child with many needs and experiencing the loss or shift in other relationships and career pursuits that may have followed their child’s diagnosis. Ala’i-Rosales and Heinkel-Wolfe beautifully capture the pursuit of supportive relationships, including with those who offer expertise and experience, as well as with other parents on very similar journeys. How one seeks and nurtures these relationships, as well as opting out when needed, is described with the same compassion and generosity reflected throughout the book.

Part Three: The Power of Loving 

The third section of Between Now and Dreams ties together the two prior sections. On its surface, a reader may assume that the section might focus myopically on positive emotions. Instead, the authors are realistic and don’t sugarcoat the challenges parents of children with autism face. Loss, fear, and disappointment are discussed openly in the context of numerous experiences, observations, and epiphanies. We left this section feeling grateful to the authors for being so incredibly transparent and vulnerable, yet insightful and encouraging in guiding us to be more active and loving parents.

Responsible and Responsive Parenting in Autism: Between Now and Dreams is an important, eloquently written, and engaging book for parents of children with autism of any age and who fall anywhere on the spectrum. It does not provide a cookie cutter approach, but rather a compassionately delivered collection of useful and practical suggestions that parents can select and tailor to their own home and goals.

Aside from behavior analysts, this book is also a must-read for teachers, therapists, medical providers, and others who work with children with autism. The content is accessible to those who are new to ABA and autism intervention, yet impactful for professionals with extensive training and experience.

Citation for this article:

Celiberti, D., & Heward, W. L. (2023). Book Review: Between Now and Dreams. Science in Autism Treatment, 20(3).

About the Authors

David Celiberti, PhD, BCBA-D, is the Executive Director of ASAT and Past-President, a role he served from 2006 to 2012. He is the Editor of ASAT’s monthly publication, Science in Autism Treatment. He received his PhD in clinical psychology from Rutgers University in 1993 and his certification in behavior analysis in 2000. Dr. Celiberti has served on a number of advisory boards and special interest groups in the field of autism, applied behavior analysis (ABA), and early childhood education. He works in private practice and provides consultation to public and private schools and agencies in underserved areas. He has authored several articles in professional journals and presents frequently at regional, national, and international conferences. In prior positions, Dr. Celiberti taught courses related to ABA at both undergraduate and graduate levels, supervised individuals pursuing BCBA certifications, and conducted research in the areas of ABA, family intervention, and autism.

William L. Heward, Ed.D., BCBA-D, is Professor Emeritus in the College of Education and Human Ecology at Ohio State University. He has taught at universities in Brazil, Japan, Portugal, and Singapore and lectured and given workshops in 23 other countries. A Past President and Fellow of the Association for Behavior Analysis International, Bill’s publications include co-authoring the books, Let’s Make a Contract: A Positive Way to Change Your Child’s Behavior (2022), Applied Behavior Analysis (3rd ed., 2020), and Exceptional Children: An Introduction to Special Education (12th ed., 2022). Awards recognizing Dr. Heward’s contributions to education and behavior analysis include the Fred S. Keller Behavioral Education Award from the American Psychological Association’s Division 25, the Ellen P. Reese Award for Communication of Behavioral Concepts from the Cambridge Center for Behavioral Studies, and the Distinguished Psychology Department Alumnus Award from Western Michigan University.

Why All Parents Should Use Token Economies

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As parents, we want our kids to want to have good behavior. They should want to behave because it’s the right thing to do, right? Yeah right. This is why all parents should use token economies.

Have you met a 3 year old with an innate desire to good for this world? It’s in there somewhere but at age 3, it’s more like threenager-ville. Little humans do what gets them what they want. They behavior in a certain way to achieve a certain outcome.

A threenager is likely to tantrum to get access to their favorite toy, TV show, candy, a left shoe they can see on the other side of the room — you name it. They are acting a certain way (tantrum) to achieve a certain outcome (getting whatever they want).

What can we do about this? Is there any way to teach them to behave?! Well, we can make sure they get what they want not by having a tantrum, but by engaging in desired behaviors.

We can use positive reinforcement in a more structured and specific way than just handing out praise and rewards willy-nilly.

The definition of a token economy is: a behavior change system consisting of three major components: (a) a specified list of target behaviors; (b) tokens or points that participants receive for emitting the target behaviors; and (c) a menu of backup reinforcer items.

Token economies can possibly take the form of sticker charts, chore charts, marble jars, etc. You need a physical token that your child can earn when they engage in the desired behavior. You do NOT need to go out and spend $50 at the nearest school supply store making a big fancy chart. You can draw 5 circles on a piece of paper. When they do the desired behavior, draw a check mark in the circle. Done. Grab that piece of junk mail off the kitchen counter and a half-eaten, I mean half-broken, crayon.

The next step is to define the behaviors. Again, you don’t need a big fancy dictionary. Just pick one to three behaviors that will earn the tokens. You need your Little to understand this so it can’t be a big grown up idea like ‘being responsible’ or ‘showing respect’. What does that mean to a Little? Be specific. You earn a token for: (1) following instructions without yelling; (2) eating 5 bites of every food Mom puts in front of you; and (3) putting on your shoes when instructed to.

Pick your battles. You may have a list of 20+ things your Little could stand to improve. I’m pretty sure I have a list of 20+ things to put myself on a token economy. Let’s prioritize and make it understandable by the kiddo.

Lastly — what can they earn with these tokens? You can give choices before earning and they can decide at the beginning or at the end. You can make a fancy menu of reinforcers — Chuck E Cheese is the perfect example of this. This many tickets = this super awesome toy.

Or, you can just say: get all the stickers, get 5 check marks, get 10 marbles and earn a fun activity. You can pick from: extra screen time, trip to the library, a new toy from the dollar spot, etc.

All of that in short form:

  1. Pick 1-3 behaviors and make sure your Little understands what they are.
  2. Have an actual token they can earn and set a goal.
  3. Provide the reward when they reach that goal. Make it a big deal!

Tips:

  • When you first start out, set the goal low. If it’s too hard to achieve, that won’t motivate anyone, especially a Little who is struggling with those behaviors to begin with.
  • Over time, raise the goal. Make the reward bigger for a bigger goal, smaller for a smaller goal. Play with it to see what is successful for your Little and doable for you in your busy day.
  • Make every token earned a big deal — lots of praise and excitement.
  • Don’t spend a lot of time and money setting up a fancy system. Like all things we do as parents — as soon as we get a good system down, our Little changes things up on us and we have to be flexible. My own daughter sees a strip of printer paper and thinks I’ve made her a new sticker chart. That’s how fancy sticker charts are at my house!
  • Be creative!
    • My aunt gave this idea from her life: She had a picture of a poodle and her daughter glued cotton balls on it. When she filled the picture, they actually got the poodle!
    • My sister let her oldest pick out his marbles for a marble jar on a special shopping trip to the craft store (less than $5 — don’t go overboard, folks!). That helped him buy into the process form the get go.
    • Cut up a picture of the prize like a puzzle. They get a puzzle piece as a token. The finished puzzle earns the prize!
    • Look in the app store. Seriously — there are many apps for reward charts.
    • Google ‘behavior chart’. You’ll find a gazillion cute templates if that’s what you’re into — cutesy.
    • I once made a necklace for a student who was really into jewelry. It was a laminated sticker chart necklace and she loved it.

One last thought: Someday you will find that things are going well and the token economy goes by the wayside. Remember it when a new problem behavior crops up and you are once again at your wit’s end. Start over. Pick new behaviors, new rewards, same system.

Don’t take my word for it — this is just the tip of the iceberg in behavior analytic research supporting token economies.

If you’re not a crafty person, you can always check out our reward chart here! 

Citations:
Cooper, J., Heron, T., & Heward, W. (2007). Basic Concepts. In Applied Behavior Analysis(2nd ed., pp 560-567). Columbus: Pearson.

Kazdin, A. E. (Ed.). (1977). The token economy: A review and evaluation. Plenum Publishing Corporation.

Kazdin, A. E. (1982). The token economy: A decade later. Journal of Applied Behavior Analysis, 15(3), 431-445.

Skinner, B. F., Ferster, C. B., & Ferster, C. B. (1997). Schedules of reinforcement. Massachusetts: Copley Publishing Group.

Reitman, D., Murphy, M. A., Hupp, S. D., & O’Callaghan, P. M. (2004). Behavior change and perceptions of change: Evaluating the effectiveness of a token economy. Child & Family Behavior Therapy, 26(2), 17-36.


Leanne Page, M.Ed, BCBA has worked with kids with disabilities and their parents in a variety of settings for over 10 years. She has taught special education classes from kindergarden-grade 12, from self-contained to inclusion. Leanne has also 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. Since becoming a mom, Leanne has a new mission to share behavior analytic practices with a population she knows needs it- all moms of littles! Leanne does through her site parentingwithaba.org and through her book ‘Parenting with Science: Behavior Analysis Saves Mom’s Sanity”.  You can contact her at lpagebcba@gmail.com.

Tip of the Week: Your Child’s Autism Diagnosis Long Term

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In the years immediately after a parent learns of a diagnosis of autism, it can be especially challenging to think of your child’s autism diagnosis long-term. But as parents advocate for their child, and as practitioners work with the family to create goals for that child, the long term must be considered. Here are a few suggestions to help with considering the long term, while focusing on short-term goals:

  • Create a vision statement. One of my favorite books is From Emotions to Advocacy: The Special Education Survival Guide by Pam Wright and Pete Wright. This book covers everything parents need to know about advocating for a child with special needs. One of the first things they suggest is creating a vision statement. They describe this as “a visual picture that describes your child in the future.” While this exercise may be challenging, it can help hone in on what is important to you, your family, and your child with special needs in the long term.
  • Look at your child’s behaviors, then try to imagine what it might look like if your child is still engaging in that behavior in five or ten years. Often, behaviors that are not problematic at three are highly problematic at 8 or 13 years old. Such behaviors might include hugging people unexpectedly or (for boys) dropping their pants all the way to the ground when urinating (which could result in bullying at older ages). While it is easy to prioritize other behaviors ahead of these, it’s important to remember that the longer a child has engaged in a behavior, the more difficult it may be to change.
  • Talk to practitioners who work with older students. Many practitioners only work with a certain age group of children. While they may be an expert for the age group they work with, it may be helpful to speak with a practitioner who works with older kids and ask what skill deficits they often see, what recommendations they may make, and what skills are essential for independence at older ages.
  • Talk with other parents. Speaking with other parents of children with special needs can be hugely beneficial. Over the years, I’ve worked with hundreds of parents who are spending countless hours focusing on providing the best possible outcomes for their children. And while it’s impossible to prepare for everything that will come in your child’s life, it may be helpful to find out what has blindsided other parents as their children with special needs have grown up.

WRITTEN BY SAM BLANCO, MSED, BCBA

Sam is an ABA provider for students ages 3-12 in NYC. Working in education for ten years with students with Autism Spectrum Disorders and other developmental delays, Sam has developed strategies for achieving a multitude of academic, behavior, and social goals. Sam is currently pursuing her PhD in Applied Behavior Analysis at Endicott College.

Autism Parenting Magazine – News, resources, and expert advice for autism parents

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Check out the newest issue of Autism Parenting Magazine! With up-to-date news and professional resources for parents of children with autism, this magazine offers expert advice from medical professionals and therapists among others, autism treatment centers and therapies, news and research in the field, and even real life stories from parents and families that inspire and provide support.

 

For more information about the Autism Parenting Magazine, visit their website here.

How a Special Needs Mother Does It On a Typical Day

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Nicole Zeitzer Johnson and her family. (NY Times)

How do so many special needs parents do it? We were incredibly moved and inspired by the story of one special needs mother, who explained a typical day with her 7-year-old son and 2-year-old daughter who suffers from FoxG1, a rare genetic neurological condition associated with seizure attacks and impaired development.

This article reminded us of the bravery and commitment of all the parents in our community, and how positivity is really the best way to “do it all.”

How Nicole Zeitzer Johnson, Communications
Director and Special Needs Parent, Does It