Essential FASD Supports: Understanding and Supporting People with Fetal Alcohol Spectrum Disorders

By Nate Sheets

People with FASDs Can Be Successful—with Support!

The question is, how do we support them? Despite being one of the most common developmental disabilities in the world, there is little understanding (and even fewer services) for people with Fetal Alcohol Spectrum Disorders (FASDs) and their families. Family members spend years looking for help and resources, only to find that most professionals do not know enough about FASD or how to support those with it. Parents and supporters of children, teens, and adults with FASDs are often perplexed by their behaviors and daily struggles. Traditional responses and approaches often make things worse. We might know that they need different types of support, but struggle with knowing how to do so. 

That’s where Essential FASD Supports comes in! This book offers a reinterpretation of “challenging behaviors” and other common struggles that people with FASDs experience while living in a world that does not understand them. It helps parents and professionals think about practical supports for everyday life and long-term progress. Additionally, readers will learn what we should avoid if we want to effectively support people with FASDs. Essential FASD Supports addresses: 

• Daily learning and thinking 

• Emotional dysregulation and “challenging behaviors” 

• Opposition 

• Safe and healthy interactions         

This book provides a proactive framework to support people with FASDs so they can use their strengths to make progress and thrive. It will benefit parents, caregivers, foster providers, therapists, teachers, and anyone else who supports someone with an FASD.

• Language: English
• Publisher: Outskirts Press
• Release date: May 28, 2023
• ISBN: 9781977266279

Nate Sheets

Nate Sheets is an FASD behavior consultant and parent coach with 15 years of experience working with neurodivergent people of all ages and their families. He developed the Cognitive Supports™ framework after taking a personal interest in cognitive neuroscience and neurodiversity. You can find his Youtube page at youtube.com/@cogsupports or visit his website at www.cogsupports.com.

Book preview

Essential FASD Supports

Understanding and Supporting People with Fetal Alcohol Spectrum Disorders

All Rights Reserved.

Copyright © 2023 Nate Sheets

v2.0

The opinions expressed in this manuscript are solely the opinions of the author and do not represent the opinions or thoughts of the publisher. The author has represented and warranted full ownership and/or legal right to publish all the materials in this book.

This book may not be reproduced, transmitted, or stored in whole or in part by any means, including graphic, electronic, or mechanical without the express written consent of the publisher except in the case of brief quotations embodied in critical articles and reviews.

Names used in this book have been changed to protect individuals’ privacy.

This book does not replace the advice of a mental health professional. Consult with a mental health professional before implementing the strategies in this book.

Subjects: LCSH Fetal alcohol spectrum disorders. | Fetal alcohol spectrum disorders—Patients—Family relationships. | Fetal alcohol spectrum disorders—Treatment. | Children of prenatal alcohol abuse. | BISAC FAMILY & RELATIONSHIPS / Children with Special Needs | FAMILY & RELATIONSHIPS / Parenting / General | FAMILY & RELATIONSHIPS / Learning Disabilities Classification: LCC RG629.F45 .S54 2023 | DDC 618.3/268/0092--dc23

Outskirts Press, Inc.

http://www.outskirtspress.com

Library of Congress Control Number: 2023902247

Cover Photo © 2023 Nate Sheets. All rights reserved - used with permission.

Interior Images © 2023 Fiverr. All rights reserved - used with permission.

Outskirts Press and the OP logo are trademarks belonging to Outskirts Press, Inc.

PRINTED IN THE UNITED STATES OF AMERICA

Table of Contents

Introduction

Part I: The Essential Supports

Chapter 1: It’s a Brain Thing, Every time

Chapter 2: Safety and Connection

Chapter 3: Time to Think

Chapter 4: Visual Supports & Executive Function

Part II: Using Essential Supports In Everyday Life

Chapter 5: Planning Together

Chapter 6: Regulating Anger and Escalation

Chapter 7: Re-Thinking Opposition

Chapter 8: Re-Thinking Lying and Stealing

Chapter 9: Social Interactions & Healthy Relationships

Chapter 10: Conclusion

Appendix A: Cognitive Supports ™ List Of cognitive skills & Tasks

Appendix B: Resources

References

Introduction

If you are reading this book, you are someone who supports a child, teenager, or adult with a Fetal Alcohol Spectrum Disorder (FASD). You may be a seasoned parent or a new foster provider. You may be a therapist or a school educational assistant. You may be a family friend or a teacher.

My name is Nate Sheets, and I am a behavior consultant who specializes in FASDs.

After starting a job at a foster care agency for children and teens with developmental disabilities, it did not take long for FASDs to get on my radar. I started seeing patterns in how foster providers responded to these children’s thinking styles and behaviors in day-to-day life.

I was developing a new interest in cognitive neuroscience, and these situations grabbed my attention. The so-called challenging behaviors and escalated incidents that foster parents reported made complete sense to me when I thought about what we, as the adults, were expecting of these children on a cognitive (thinking) level.

Like many of you, I wanted to do research on how to support people with FASDs, but there were few practical resources available. Eventually I stumbled upon the work of Diane Malbin, MSW, the author of Trying Differently Rather Than Harder—which was a critical step in understanding the FASD brain. As I continued to learn, I quickly realized that people with FASDs (and their families) were in desperate need of understanding and support.

Many of you have been parents or supporters of someone with an FASD for years. You have likely figured out several of the strategies in this book already. I hope that this book will help you to brainstorm even more ideas through its explanations of why those strategies can work.

How is this book’s approach different? The Cognitive Supports™ framework focuses on the brain. No matter the situation, the brain is always relevant to someone’s behavior. This book expands on recent, evidence-based approaches and applies them to FASDs. It will help you to identify the cognitive differences, strengths, or struggles in the person that you are working with, and give you several practical and specific strategies to support those cognitive skills.

I do not want the behaviors mentioned in this book to scare anyone, or to further perpetuate stigma against people with FASDs or their biological parents. People with FASDs have many positive qualities and strengths. However, due to several factors—including a lack of system support—their lives can be stressful. And what comes with stress? Dysregulation and so-called challenging behaviors that they are often blamed and punished for.

But there is hope! Conversations around FASDs should not be swamped in negativity—when we do that, it spreads stigma. My goal with this book is to help as many people as possible successfully support children and adults with FASDs, and to avoid many of the negative consequences that come when support is inappropriate or simply not there.

Until we support people with FASDs in everyday moments and interactions, we will not see improvements in big picture areas. When we can slow down our own agendas, take a step back, and shift how these quick, everyday moments go, stress begins to decrease.

And when we decrease stress, we decrease struggles. My goal is to give you a basic understanding of how to support the little moments.

The supports in this book can help people with FASDs use their current skills and strengths to be successful, and to eventually work on more complex issues. This is how we start to see improvements. Improvement will not come from telling the person to try harder over and over. It will not come from being punished or restricted. It will not come from being lectured or guilted. Improvement comes from support.

This book will give you a beginning framework and set of strategies. Reading it will help you understand how the brains of people with FASDs may think and process information differently than your brain. It will help you to re-interpret challenging situations and give you practical strategies to provide support. Because everyone with an FASD is different, not all strategies will work or be applicable to your situation.

As you read, you will see certain terms that I use to help this book apply to as many people as possible. Some of them include:

FASDs or Fetal Alcohol Spectrum Disorders—FASDs are a group of diagnoses which fall under the same umbrella of psychological and medical conditions. These disorders come from being prenatally exposed to alcohol while in the womb. The person you support may have a diagnosis or they may not. It is possible that the person you support was not exposed to alcohol, but rather to drugs, medications, or other substances which impacted their development. Regardless of the specific diagnosis or the type of prenatal exposure, the strategies in this book are meant to help.

The person you support or supported person—I use these terms frequently because I want to make it clear that this book applies to both children and adults with FASDs. When I use these terms, I am talking about all ages.

Supporters—in this book, supporters means anyone who parents, cares for, or works with people who have FASDs. While I anticipate that most people reading this book are parenting someone with an FASD, it is meant to be applicable to everyone, such therapists, teachers, foster providers, etc.

Neurodivergent/neurodivergence—these terms come from the phrase neurodiversity and were coined by Kassiane Asasumasu. When using them, I am referring to a population much larger than those with FASDs. To be neurodivergent means that your brain does not process information in the same way as the typical population—which likely means that you think or act differently than the typical population. All people with FASDs are neurodivergent. Other types of neurodivergence include ADHD, Autism, intellectual disabilities, and Downs Syndrome.

I did not really start to believe in the potential of the Cognitive Supports™ approach and framework for several years—until I started hearing from some of the parents I work with. As a behavior consultant, I thought my goal was to reduce the frequency and intensity of challenging behaviors. But when I started to hear feedback like, I understand my daughter more, and Our connection has improved, and We had it so wrong before—you’ve changed the way we view our son, my goals completely changed. I want this book to strengthen relationships and understanding between people with FASDs and those who support and love them.

I will continue to remind you that this book does not provide any quick solutions. Instead, it provides a new and proactive framework to help supporters re-learn and re-interpret our common gut reactions to struggles. As you will read, you will see that when we seek solutions which are not brain-based or neurodiversity-affirming we often make things more stressful for everyone—but especially for the person with an FASD.

Children and adults with FASDs are a large part of the population and have a wide variety of abilities, interests, and passions. They can enrich our lives just as much as we might impact theirs. With support, understanding, resources, and supporters who understand them, people with FASDs can overcome challenges, learn new things, make choices about their lives, and be happy. I hope that this book contributes to them doing these things.

PART I:

THE ESSENTIAL SUPPORTS

CHAPTER 1

It’s a Brain Thing, Every time

Most people reading this book already know that traditional responses to so-called challenging behaviors do not work for people with Fetal Alcohol Spectrum Disorders (FASDs).

Traditional responses include:

Punishing them after they misbehave.

Making them promise not to behave that way again.

Yelling at them.

Explaining the negative impacts of their behavior to them.

Lecturing them or trying to reason with them.

Restricting them from an activity.

Suspending or expelling them from school.

Many of these strategies are not only traditional and ineffective, but also automatic, immediate, and impulsive on our part! We often use (or threaten to use) these ineffective approaches the instant a behavior starts or as soon as we feel that a behavior is about to happen.

If you yell at the person you support, do you sit there and think about all of your options first? Do you then choose yelling as the most effective or appropriate option? Is choose the right word for it? If my experience in family homes (and as a yeller myself) gives me any indication, the answer is probably no.

If your immediate response to a behavior is to yell at the person you support or to engage in another unhelpful response, would it be safe to say that your brain acts before you can fully think?

It is important for us to understand that we often struggle for the same reasons that someone with an FASD may struggle: because our brains impulsively try to handle intense or complicated situations as they play out. And even though our responses are often unhelpful (and can make things worse), we still allow our brains to engage in them over and over again.

Regulation

If you are one of the many supporters who struggle to resist yelling in moments of a challenging behavior, you do not struggle because you are a bad person or because you need to try harder. You struggle because your brain is unable to find the cognitive resources it needs in the moment to keep you calm (regulate) and to try something different. It’s a brain thing.

Automatic responses (and their unhelpfulness) can also be true for those readers who are not necessarily yellers. When the person you support is upset, perhaps you take things personally or you try to reason with them—despite it rarely working to make things better in the moment or in the long term. When the stress of a situation hits, your cognitive skills and abilities literally drop, and this is when our unhelpful, immediate, and impulsive responses come out. So, instead of helping the person we support to regulate, learn, and thrive, we can become an additional stressor to an overwhelming situation.

When I do public speaking and trainings about these concepts, I can easily demonstrate how our skills drop during intensity. Let’s imagine for a moment that you are in one of my workshops. You are sitting there, surrounded by people, hearing me talk about something and then—all of a sudden—I point to you and ask firmly, What’s 145 multiplied by 24?

Really take a second right now to envision and to think about how your brain would respond sitting there. You are surrounded by dozens of people, dealing with the expectation of solving this math problem in your head right now. When I do this exercise, most people nervously laugh or respond with I don’t know or I can’t. Let’s imagine you do the same.

Go ahead, I reply—seriously and sternly. Just think about it.

Now you are expected to sit there and put more effort into the math problem while everyone watches you and waits. Some of your fellow audience members are taken aback by my sudden intensity, others are still confused as to why my demeanor has changed.

Every few seconds that I do not get an answer from you, I say, Hurry up, Try harder, Everyone else can do it, why can’t you? I increase my intensity and look at you in the eyes, expecting a response.

After less than a minute of this negative interaction, the demonstration can go in various directions, depending on who I happen to choose. What would you do? Maybe you would freeze, maybe you would laugh nervously, maybe you would look for help from others near you, or maybe you would start to escalate (dysregulate) toward me for putting you on the spot and expecting you to do something that you simply cannot do.

Do any of my verbal statements to you in this situation help you solve the math problem? Does my insistence that you "try harder" help? Does my outward intensity or my impatience or my declaration that It’s not that hard! support you in meeting my expectation?

If we’re on the same page, you understand that the answer to all these questions is no, and that my statements would have the opposite effect of being helpful to most people. They add pressure, lower cognitive skills, increase anxiety, and eventually cause a defensive response like anger or leaving the area.

Supports, Not Reactions

I started developing my framework, Cognitive Supports™, when I had a lens-change moment early in my career. This moment was when I learned that many so-called challenging behaviors are the result of someone being expected to use specific cognitive skills which their brain cannot access.

Instead of expecting someone to multiply large numbers during one of my workshops, we just as easily have a problem when we expect a person to use cognitive skills that their brain has not yet developed or that their brain cannot access.

Examples of these skills include our attention span, impulse control, cognitive emotional regulation, and our ability to problem solve. Whenever someone with an FASD is put in a situation that demands cognitive skills which their brain cannot access, the response—often a challenging behavior—is likely their brain’s immediate way of trying to protect itself.

It is very common for supporters to interpret these situations as the person simply not wanting to use effort or to meet our expectations. This misunderstanding of what has been called skill vs. will happens to many children and adults with FASDs, up to dozens of times per day.

The framework of Cognitive Supports allows us to shift our focus away from the specifics of challenging behaviors and put it on the things which lead to them, such as cognitive skills, previous trauma, sensory needs, etc.

Shifting our focus away from surface-level challenging behaviors has many advantages, including not having to worry about whether or not the person we support is being intentional or manipulative. While both are possible some of the time, there are also many problems with us putting motives on a neurodivergent person—or anyone else, for that matter. One risk of this is that we could be wrong.

And yet, parents and professionals constantly make snap judgements about motivations and behaviors, often moving us toward punishment-centered strategies when supporting someone with an FASD. This becomes very damaging when the dynamic is adult-and-child, and when the misinterpretations, punishments, and finger-pointing go on for an extended period.

As you begin to learn about how both everyday and unique situations demand cognitive skills, some of you may begin to question how you have previously parented your child, taught students, or provided support to someone with so-called challenging behaviors. If the logic of Cognitive Supports is true, even just some of the time, the entire way we parent and teach everyone—not just people with FASDs—needs to be re-assessed.

Let’s use the math problem I mentioned earlier to look at the differences in how supporters naturally respond when we focus on behaviors vs. cognitive skill differences/struggles:

When we think of the immediate issue as a behavior, it leads us (and, more specifically, our brains) down the road of the immediate, unhelpful responses that we as parents or professionals have all too often. When we think of a specific cognitive skill struggle, it leads us to practical responses that also happen to be positive in nature.

This book will not recommend punishments because, in my experience with both children and adults with FASDs, punishments do not address the underlying reasons for behaviors. Instead, they often make things worse.

Cognitive Skills

Cognitive Skills are the tasks and processes our brains use to think. Reading this book demands cognitive skills of you every moment that you are focused on it.

Thinking about challenging behaviors in a new way also demands cognitive skills from you. Every conversation, every activity, and every to-do task—cognitive skills are our brain’s set of tools to do them all. It is hard work, even if much of it feels natural or easy to many adults.

As I work with families and supporters of people with FASDs, there are dozens of cognitive skills which I consider. However, to keep this book as simple as possible, we will focus mostly on the following cognitive skills and tasks:

Verbal-language processing

Processing speed

Cognitive emotional regulation

Attention span

Impulse control

Planning & problem solving

Memory

Because everything we do while we are awake demands cognitive skills,