Asperger's/Asd: Making Life Easier, Safer, Better: (A Parent's Roadmap to Sanity)

This book, Asperger’s/ASD: Making Life Easier, Safer, Better (A Parent’s Roadmap to Sanity), is a narrative, a handbook, and a toolkit all rolled into one. As a narrative it details the personal history of one family’s struggle with their son’s Asperger’s. As a handbook it addresses the whole set of problems that come with Asperger’s/ASD. And as a toolkit it better equips you to confront these problems, so they are easier to visualize and break down into manageable pieces.

With this book you will:

Gain a clearer understanding of the subtleties of Asperger’s Syndrome, with special attention paid to the more difficult to identify co-occurring problems.

Learn about disability insurance and supplemental income programs, and how to access them for your child.

Understand why you need to develop an Individual Education Plan for your child.

Address your child’s future (home, work, relationships, self-care, and independence).

Be able to set up your care community person by person, specialty by specialty, until all issues are addressed.

Make life within the home less painful physically, financially, and emotionally.

The unique layout of this book is practical, useful, and easy to reference.

It is written with unsparing honesty and bright flashes of humor and empathy by a father who learned about Asperger’s the hard way—through trial and error.

With emphasis throughout placed on early intervention and treatment, dividing and conquering, and parental involvement, as well as an excellent Resources and Further Reading section to guide your additional research, Asperger’s/ASD: Making Life Easier, Safer, Better (A Parent’s Roadmap to Sanity), is a book you’ll come back to again and again throughout your child’s development. (Teachers, counselors, and healthcare and social services specialists will find it useful, too.)

Asperger’s/ASD: Making Life Easier, Safer, Better

(A Parent’s Roadmap to Sanity)

Anton Swenson

With Anna Marie Brown and Jenny Bastet Brown

EPUB ISBN: 978-0-9889923-0-6

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Acknowledgments

Apart from my efforts and those of my co-writers, the success of this book depended greatly on the help and encouragement of several others. I would like to express my sincere gratitude to the following people, without whom this book would be much less spectacular.

First, thanks to Jean-Christie Ashmore, Seattle author, who was central in the idea of actually creating this book, and who showed me that it was doable.

To Steve Dubin—mentor, aspiring author, and marketer extraordinaire—and one of my role models.

To Amy Scott, our editor, for her keen eye and high level of flexibility.

To my wife, for giving me the space to do this project, for driving the process and cutting through the red tape, and for inspiring the divide and conquer approach.

To Dr. Mary Lynn Theel, for her insight, her breadth, and her loving care of our son.

To Kris McCarthy, for taking life by the reins and riding with gentle, steady ease; and to the entire corral at Forward Stride.

To Jason Giles, a mental judo-artist and extraordinary family therapist.

To Kathleen Mulqueeny, caring, trusting, and inspiring.

To Dr. Geri Dawson, chief science officer of Autism Speaks, for further insight into advances in autism treatment.

To Laurie Schick, for making time to share her expertise.

To Stacia Baker, for her encouragement about the book, and for helping my son look for work.

To the entire staff of LifeWorks NW, Tigard.

To Tobi Burch Rates, executive director of the Autism Society of Oregon, for the great leads.

To Donna Meyer, for her incredible legal savvy.

To my daughter, Ala, for her love, support, and understanding, and also for her brilliance and independence.

And finally, to my son, River, for his warmth, humor, wolverine-like determination, and irrepressible spirit.

For my mother, who showed me the best of parenting.

"Remember, blood is not only much thicker than water,

it’s much more difficult to get out of the carpet."

—Phyllis Diller

TABLE OF CONTENTS

PREFACE

INTRODUCTION

CHAPTER ONE

Gaining a Clearer Understanding: A Review of Asperger’s and the Autism Spectrum

The Subtleties

Secondary Problems (Co-Occurring/Comorbid)

Behaviors vs. Symptoms: Teasing Out the Issues

Early Intervention, Diagnosis, and Treatment

What Happens If You Don’t Act?

Programs for Early Intervention

Right Now Is Good Enough

CHAPTER TWO

Divide and Conquer: Tackling Each Problem Piece by Piece

The Parents’ Role

Health Insurance and Supplementary Income for Your Child

Selecting a Doctor or Pediatrician

Selecting a Psychiatrist (If Needed)

Selecting a Psychologist (If Needed)

Selecting a Physical Therapy Program (If Needed)

Self-Directed Services, Brokerages, and Domestic Employees

A Final Word on Building Your Village

CHAPTER THREE

Your Child’s Special Education

Addressing the School Setting: The Universe of Options

The Process: Getting Your Child from Public School into a Special Education Program

Tips for Making the Transition

The IEP: An Invaluable Tool to Aid Your Child’s Success in School

Special Education: The Secret to Success

A Word on Teachers and Aides (and Parents!)

Using a Mentor/Tutor

CHAPTER FOUR

Toward a Peaceful and Successful Life for Your Child, Your Family, and Yourself

Coping as an Individual

Getting Your Needs as Parents Met: Tactics for a Calmer Environment

Getting Siblings on the Team

Coming to Terms with Life Not Looking the Way You Thought It Would

CHAPTER FIVE

Addressing the Future

Setting Up a Trust

College

Jobs

Housing

Relationships

Self-Care

Approaching Independence

En Route to the Future: The Importance of Relaying a Consistent Message

CHAPTER SIX

Conclusion

RESOURCES AND FURTHER READING

BIBLIOGRAPHY

ABOUT THE AUTHORS

FOOTNOTES

PREFACE

I remember hearing the phone ring while I was at work one day when my son, River, was in elementary school. By this point I’d already gotten several calls from his school: Your son is threatening other students. Your son was swearing at his teacher. Your son’s just punched one of his friends in the face.

What now? I thought, staring at the phone, feeling nauseous. It seemed like there was a new challenge every day, and we often didn’t know how to handle it.

A very large part of what my family and I learned about Asperger’s we learned the hard way—through trial and error. Since then, I have come to see how we could have done things better, and in a more organized way, and how we could have achieved some of our basic goals more quickly (like getting his aggression and depression under control). In the spirit of that learning process, and in the hope that it will help many families avoid the most serious problems that can arise with ASD, I have written this book.

The issues and strategies presented in the book will not apply to all children with autism. I am not qualified to discuss the problems of the most severely impacted children, because the information in this book comes from experiences with my own son, and is therefore aimed mainly at parents whose children are at the high-functioning end of the autism spectrum, or very close to it. And while this book is not meant to replace the guidance of qualified professionals, it is meant to inform you about what types of qualified professionals (and all other kinds of help!) are out there, what they are (and aren’t) able to do, and what our experiences with them have been. How sorely I could have used a roadmap like this while raising my son! May this one help you and your own child find your way.

—Anton Swenson

INTRODUCTION

This book, Asperger’s/ASD: Making Life Easier, Safer, Better (A Parent’s Roadmap to Sanity), is different than other books about Autism Spectrum Disorder. It is not just a narrative, just a handbook, or just a toolkit. It is, in equal parts, all three. It is a narrative in the sense that it details the personal history of my family’s struggle with our son’s Asperger’s. It is a handbook in that it covers the whole set of problems that come with Asperger’s/ASD. And it is a toolkit in that it will better equip you to confront these problems, so they are easier to visualize, break down into pieces, and address. The layout of this book is designed to be practical, useful, and easy to reference, while the book itself is written with unsparing honesty, empathy, and what I hope you’ll recognize as humor—from one family to other families facing similar circumstances. (Clinicians, caregivers, teachers, social workers, and others in the ASD community will find this book helpful, too.)

However much we would like them to, our children’s problems will not go away on their own. That is why in this book I focus on three recurring themes as the best way to address these problems: early intervention and treatment, dividing and conquering, and parental involvement at all stages. While these themes may seem obvious to clinicians and service providers, experience and research has taught me that they’re not so obvious to parents—not by a long shot.

Early diagnosis and treatment of Autism Spectrum Disorders (ASDs) hold the best promise of a better life for your child—as well as an easier one for you. There is no prevention currently available for ASDs, and there is no silver bullet; the condition is lifelong, and most of the associated problems will be also. However, once you are familiar with the divide and conquer strategy—identifying which of your child’s problems are the most serious, the most likely dangerous or life-threatening, or perhaps only the most maddening—each seemingly insurmountable problem will turn into several smaller, approachable ones. Most of the problems associated with ASDs can be moderated, muted, or brought under control, but it also takes dedicated parental involvement for that to happen. Active participation in meetings with doctors, psychiatrists, counselors, teachers, and assistants is the key to success.

Although it cannot possibly address every struggle and surprise waiting in store for you, this book will help you:

Gain a clearer understanding of the subtleties of Asperger’s syndrome, such as the less tacit and more difficult to identify co-occurring problems. (We’ve even included specific guidelines for how to tackle your child’s medical and psychiatric issues effectively.)

Understand disability insurance and supplemental income programs (Medicaid, SSI, SSDI): what they are, how they work, and how to access them for your child.

Set up your care community person by person, specialty by specialty, until all issues are addressed, including the hows and whys of selecting your medical and mental health care providers, with interviews from knowledgeable psychiatrics, psychologists, teachers, and physical therapists.

Develop an Individual Education Plan for your child, by explaining how special education works and how to access it and use it.

Create a pathway toward a peaceful and successful life for your children, your family, and yourself (with a hard look at sibling relationships, and new tactics for coping and adjusting, based on personal experience).

Address your child’s future: work, housing, relationships, finances, self-care, and independence.

Make life within the home less painful physically, financially, and emotionally.

Gather even more information, thanks to the excellent "Resources and Further Reading" section.

It is my hope that Asperger’s/ASD: Making Life Easier, Safer, Better (A Parent’s Roadmap to Sanity) will be a book you come back to again and again throughout your child’s development. I encourage you to use this book to the hilt, just like the rumpled, well-used roadmap you keep beneath your car seat!

Gaining a Clearer Understanding

In chapter 1, Gaining a Clearer Understanding: A Review of Asperger’s and the Autism Spectrum, I discuss how vital it is to identify the different problems that your child is experiencing, so that each element can be managed effectively. Recent findings have suggested that as many as 70 percent of children who have ASD also have some sort of secondary problem¹ (also called comorbid, or co-occurring). Because high rates of comorbidity seem to be the nature of the autism beast, it is critical for parents to have a highly accurate diagnosis of their child’s problems—one that includes all major issues, whether they are autism-related or not. Though a multiple diagnosis can be more complex and difficult to manage than a single diagnosis, in many cases, specific medications and/or treatment can be used for each of the different situations and they can work together.

The more extreme levels of Asperger’s syndrome, and its co-occurring problems, like depression and aggression, can be life-threatening for both the child and the parents. Sadly, I know of several cases of parents who had to have their children institutionalized because of violent attacks. But this need not be the case. Early intervention and successful treatment can prevent many conflicts from reaching a critical point.

By offering an inside look at the (sometimes not-so-subtle) subtleties of Asperger’s, with special attention paid to its myriad co-occurring problems, my goal is that this chapter will prevent your child from having to deal with psychiatric hospitals and/or incarceration resulting from ASD behaviors. Even better, your family will get a handle on the wider range of