Ten Things Every Child with Autism Wishes You Knew E-Book

Ellen Notbohm

• Herausgeber: Future Horizons
• Kategorie: Ratgeber
• Serie: Ten Things
• Sprache: Englisch

Seitenzahl: 215

Veröffentlichungsjahr: 2019

Beschreibung

Winner of the IPBA Gold Medal for Nonfiction Series (with Ten Things Your Student with Autism Wishes You Knew) and Winner of the Grand Prize for Instruction and Insight and First Place in Psychology, Chanticleer International Book Awards.

One of the autism community’s most beloved classics, Ten Things Every Child with Autism Wishes You Knew has informed, delighted, and guided millions of families and professionals the world over since its first edition was published in 2005.

A child’s voice leads into each chapter, offering a one-of-a-kind exploration into how ten core characteristics of autism affect our children’s perceptions and reactions to the surrounding physical, sensory and social environments. This revised and updated third edition sharpens the focus on these basic aspects while expanding on how our own perspectives shape the life of our child and ourselves, today, tomorrow, and for years to come. An all-new section illuminates the surprising breadth of our power of choice and outlines potent strategies for strong decision-making in every situation.

Every parent, teacher, social worker, therapist, and physician should have this succinct and informative book in their back pocket. Framed with both humor and compassion, the book lists the top ten characteristics that help illuminate—not define—children with autism. Ellen's personal experiences as a parent, an autism columnist, and a contributor to numerous parenting magazines coalesce to create this guide for anyone with someone on the autism spectrum in their life. There is also an edition of this book available in Spanish.

Other awards include:

• Grand Prize Short List, Eric Hoffer Book Awards
• First place in Psychology, Chanticleer International Instruction and Insight Awards
• First Runner-up – Health, Eric Hoffer Book Awards
• Montaigne Medal finalist, Eric Hoffer Book Awards
• American Book Fest Best Book Awards finalist
• National Indie Excellence Book Awards finalist
• Da Vinci Eye Award finalist, Eric Hoffer Book Awards
• Wishing Shelf Book Awards (UK) finalist

Leseprobe

Ten Things Every Child with Autism Wishes You Knew, Third Edition

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© 2019 Ellen Notbohm Website: https://ellennotbohm.com Email: [email protected] Social media: Facebook, Instagram, Twitter, LinkedIn, Pinterest

For foreign rights licensing, please contact the author at [email protected]

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ISBN: 9781941765883

Praise forTen Things Every Child with Autism Wishes You Knew

"This third edition is amazing, and an absolute must-read. Ellen has absorbed so much more wisdom from both the autism world and the autistic world and poured it into her work, and I'm floored. Buy this book, read it, loan it, share it, then read it again!”

— Jennifer McIlwee Myers, Author of Growing Up with Sensory Issues: Insider Tips from a Woman with Autism and How to Teach Life Skills to Kids withAutism or Asperger’s

“This third edition of Ten Things Every Child with Autism Wishes You Knew is without exception the best yet! As an international consultant on ASD who works with individuals, schools, and parents, I have used this resource as a core teaching tool in most of my trainings, especially with staff who are new to the field of Special Education and/or working with an individual with ASD. I was really excited to see the new chapter on Your Power of Choice. As Ellen writes: ‘Seldom is the instance in which we truly have no choices,’ and this is so true. It empowers the individual to have control in a world that in many ways feels out of control. This book is a must have for your autism resource collection.”

— Jim Ball, EdD, BCBA-D, President/CEO JB Autism Consulting

“I wouldn’t have believed that Ellen Notbohm could improve on her original classic, the excellent Ten Things Every Child with Autism Wishes You Knew, but she has done just that. As a parent, as one who works with autistic people, and as an avid reader on the subject, I’m telling you: you must have this book on your shelf. If you know anyone on the spectrum, this book will help you understand them better. Parents who made it through your child’s early years with hope and optimism intact because you had the original Ten Things, you need this update. Notbohm will take you from the preschool years through middle school, high school, and beyond, continuing to inform and inspire parents as they prepare their children for adulthood. The questions for discussion and reflection are perfect for parent support groups, teacher trainings, or book clubs. Optimism abounds.”

— Wendela Whitcomb Marsh, MA, BCBA, RSD, Author of The ABC’s of Autism in the Classroom

"The new edition of Ten Things Every Child with Autism Wishes You Knew is better than ever. This is essential reading for people who are important in your child’s life, be it teachers, therapists, family members, neighbors and even the bus driver, to help them understand your child’s complex and sometimes baffling social, sensory, behavioral, and emotional challenges. Written by the mother of two sons on the spectrum, this book gives a powerful voice to kids, teens, and adults who can’t easily advocate for themselves, providing an ‘inside view’ of the different realities of life with autism. The new chapter on ‘Your Power of Choice’ compassionately helps readers recognize that while they may feel overwhelmed, scared, and sometimes paralyzed, they are never powerless, and provides key empowering steps they can take to help those they love thrive and live meaningful, productive lives."

— Lindsey Biel, Occupational Therapist, Coauthor of Raising a Sensory Smart Child: The Definitive Book for Helping Your Child with Sensory ProcessingIssues, Author of Sensory Processing Strategies: Effective Clinical Work with Kids & Teens

“Every child with autism deserves to have the adults in their life read this book. Parents will find a compassionate, astute ally who has lived the journey with her now-adult son. All readers will clarify and refine their understanding of what it really takes to help a child fit into the world, achieve a state of confidence, and fulfill their unique promise. Compact, well organized and accessible, Ten Things Every Child with Autism Wishes You Knew contains a remarkable amount of detailed information, helpful suggestions, and concrete strategies. Realistic, practical, and uplifting, it will help you make the best choices for both your child and yourself. It is on my ‘short list’ of highly recommended books on autism and I urge you to soak up its wisdom and then share it with others.”

— Debra Moore, PhD, Psychologist (retired) and Coauthor with Temple Grandin of The Loving Push: How Parents and Professionals Can Help Spectrum KidsBecome Successful Adults

“Ellen Notbohm reminds us once again that we should learn more than we teach and that we should listen more than we talk. Ten Things emphasizes these points and offers readers important insights and invaluable information. If you have a 1st or 2nd edition, you will want to purchase a new copy as this book is not just a compassionate and person-centered look at autism, it is also a reflection of a changing field and evolving understandings of advocacy, support, and ability.”

— Paula Kluth, PhD, Author of You’re Going to Love This Kid and Pedro’s Whale

“Great book for the parent of a child who is newly diagnosed. It will help the parent who is frightened by the diagnosis get started on creating a positive outcome for their child.”

— Temple Grandin, PhD, Author of The Way I See It and Thinking in Pictures

“The third edition explains our evolving insights into autism that are so valuable for parents, professionals, and those who have autism. Please grant the wish of the autistic child that you know and absorb the wisdom and clarity of a book that I highly recommend.”

— Tony Attwood, PhD, Author of Ask Dr. Tony: Answers from the World's Leading Authority on Asperger's Syndrome/High-Functioning Autism

“How wonderful that Ellen Notbohm's classic, Ten Things Every Child with Autism Wishes You Knew, is here for a new generation! If your child has been diagnosed with autism, or if you think that your child may have autism, this is the first book that you should read.”

— Bobbi Sheahan, Author of What I Wish I'd Known about Raising a Child with Autism

“When my son was diagnosed, I was overwhelmed, heartbroken, and confused. A day or so later, I picked up Ten Things and it was a breath of fresh air. I didn’t need piles of medical texts and studies at that point in time, I needed what this book gave me—understanding, compassion, and hope.”

— Karen Topper

“Ten Things is the book I found most helpful and most hopeful after my son's autism diagnosis eight years ago. Since then, I have recommended it to many parents at the start of their journey and, like me, they have fallen completely in love with it.”

— Maura Campbell, Senior Editor, Spectrum Women magazine

Also by Ellen Notbohm

Nonfiction

1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’swith co-author Veronica Zysk

Ten Things Your Student with Autism Wishes You Knew with Veronica Zysk

The Autism Trail Guide: Postcards from the Road Less Traveled

Fiction

The River by Starlight

For Connor and Bryce

because they are doing such a commendable job of raising me

Contents

Preface

It begins

Chapter One

I am a whole child.

Chapter Two

My senses are out of sync.

Chapter Three

See the difference between won’t (I choose not to) and can’t (I’m not able to).

Chapter Four

I’m a concrete thinker. I interpret language literally.

Chapter Five

Listen to all the ways I’m trying to communicate.

Chapter Six

Picture this! I’m visually oriented.

Chapter Seven

Focus and build on what I can do rather than what I can’t do.

Chapter Eight

Help me be social.

Chapter Nine

Identify what triggers my meltdowns.

Chapter Ten

Love me without “if.”

The Sum of Ten Things: Your Power of Choice

It continues

Questions for Discussion and Self-Reflection

Acknowledgments

About the Author

Preface

When Children’s Voice published my article “Ten Things Every Child with Autism Wishes You Knew” in 2004, I couldn’t have anticipated the response. Reader aft er reader wrote to tell me that the piece should be required reading for all social-service workers, teachers, therapists, and relatives of children with autism. “Just what my daughter would say if she could,” said one mother. “Screams wisdom throughout every word and sentence,” said another. The article traveled from website to website, around the world, crisscrossing every continent (except Antarctica). The sheer volume of interest and the diversity of the groups who found it relevant humbled me. They included hundreds of autism and Asperger’s groups, but also support groups for chronic pain, obesity, assistance dogs, inner ear disorders, homeschoolers, religious school educators, knitting circles, food retailers. “I have a strong sense that your message crosses over to many special needs,” wrote a social worker in the American Midwest.

“Ten Things” quickly took on a life of its own. Why was it resonating so loudly? I decided that it came from the fact that the piece spoke with a child’s voice, a voice largely unheard in the rising uproar about autism. The oft en-tumultuous dialogue was, and still is, productive and welcome. But what could be more ironic than that the subjects of the discussion are oft en exemplified by the inability to express and advocate for themselves? I had seen several articles that took related approaches: ten things teachers want parents to know, or what mothers wish their children’s teachers knew, what dads of autistic children need to know. When my editor, Veronica Zysk, presented me with one such adult-to-adult piece, I asked, who speaks for the child?

“Write that piece,” Veronica urged.

My son Bryce had been formally diagnosed at age four. I felt fortunate that his voice had been heard, thanks to committed teamwork among family members, school staff, and community resource workers. I ardently wanted his level of success to be the norm, not the exception. The original article, and later, the original edition of this book, flowed from that.

Individual and collective attitudes about autism form under the influence of the language we choose in defining it. The incendiary and provocative remarks and opinions, whether intentional or thoughtless, commandeer our attention. We may respond to them, we may despair of them, we may choose to ignore them. But it may be the squadron of subtleties and nuances of language flying under our radar that does more to impede the development of healthy outlooks about a child’s autism. Throughout the book, you’ll be asked to contemplate how the language of autism shapes your perspective. It will help you view autism from angles you may not have yet considered. There are also a few things you won’t see.

You won’t see the word “autism” capitalized in this book unless it’s at the beginning of a sentence or part of a name or title. We don’t capitalize breast cancer, diabetes, glaucoma, anorexia, depression, or other conditions that don’t include someone’s name, like Asperger’s. Capitalizing “autism” makes a visual statement that assigns it an authority and power it doesn’t deserve.

You won’t see these words used to describe a child with autism: suffer, obsess, perfect, picky, tantrum, quirky, or other words that perpetuate derogatory stereotypes, or stereotypes that set unrealistic, unfounded or unattainably high expectations.

And finally, the word “normal” never appears in this book outside quotation marks. The early days following our son’s diagnosis of autism were spiked with questions from others along the lines of

“Do you think he’ll ever learn to be normal?” I found these questions at first stupefying, and later, presumptuous in a manner that almost made me pity the asker. I learned to answer the question with a smile and a wink and “When there comes a time that there is such a thing” or “Naw, he’ll never be a dryer setting.” Then and now, I quoted Canadian songwriter Bruce Cockburn, who put it, “the trouble with normal is it always gets worse.”

“A Word about Normal” is my favorite passage from the book Veronica and I later wrote together, 1001 Great Ideas for Teaching and Raising Children with Autism and Asperger’s. In it, a middle school speech therapist answers a mother’s concern that her son hasn’t made many friends and might not “do all the normal teen things we did.”

“When your son came to me last year,” the speech therapist tells Mom, “his social thinking skills were almost nonexistent. He didn’t understand why he should say hi to people in the halls, he didn’t know how to ask a question to further a conversation, or how to engage with a peer during the lunch hour. Now he’s working on those things. That’s a huge amount of progress.”

“But he’s only made two friends.”

“I would rephrase that: he’s made two friends! One shares his interest in model trains and one shares his interest in running. He knows how you feel, though. So I am going to share with you what he told me the other day. He said, ‘I don’t want a lot of friends. I can’t handle a lot of friends. More than one at a time stresses me out. I can talk to these two friends about things I’m interested in. They are great for me.’

“Walk through this or any other school,” the SLP continues. “You’ll see a huge range of ‘normal’ middle school behavior. You’ll see nerdy normal, sporty normal, musical normal, artsy normal, techie normal. Kids tend to gravitate to groups that make them feel safe. For now, your son has found his group. You and I walk a fine line: honoring his choices while continuing to teach him the skills he needs to feel comfortable expanding his boundaries.”

Your child has many social selves. To embrace all of them, and therefore him as a whole child, is to redefine how we view “normal”—one person at a time.

Although the ten things presented in this book characterized my child, they won’t and can’t possibly apply in total to all children with autism. Rather, you’ll see some of the characteristics and needs in every child on the autism spectrum in degrees that vary from child to child, and from hour to hour, day to day, and year to year in an individual child. Sometimes they overlap, or manifest differently when context or setting changes, socially or physically. So you may notice that I’ll sometimes make a particular point more than one way in this book. It’s not careless repetition or redundancy, it’s deliberate recognition that often we need to hear something more than once or approach it in more than one way to fully understand and process it. We have to acknowledge this in ourselves to be able to do the same for our children, because this is an essential component of being able to teach autistic children in a manner meaningful to them. It’s the threshold to a world of choice, for you and your child, much more expansive that you might at first imagine.

With education, therapy, growth and development—yours included—the limitations imposed by some of these characteristics may diminish, and some of those so-called limitations may be re-channeled in such a manner that you come to see them as strengths. When you reach the end of this book and in the days that follow, you may find yourself in a new and more interesting place on your child’s autism spectrum than where you started. I hope so.

So, why a third edition of Ten Things Every Child with Autism Wishes You Knew when millions have read the first and second editions and the book’s appeal remains strong? Why fix something that isn’t broken? In his book and film Journey of the Universe, evolutionary philosopher Brian Thomas Swimme describes the Milky Way galaxy “not as a thing, but as an ongoing activity.” Such is the autism spectrum, an ever-exchanging sphere of being within a larger universe. We travel the continuum, sometimes hurtling along, sometimes stalling out, but each particle—child, parent, teacher, sibling, grandparent, friend, stranger—has his or her own place in the (sometimes elusive) order of things. That spot on the spectrum shifts over time.

Experience and maturity change our perspective. The years that passed between the first and second editions of Ten Things encompassed my son’s post-high school years and transition to adulthood, including learning to drive, becoming a voter, stepping into the often-irrational world of dating, attending college and joining the workplace. How could that not have altered my position on the spectrum? Those years also saw a continuing global increase in autism spectrum disorders that baffled and alarmed everyone with a pulse (everyone but the cult-level cynics). My place on the spectrum shifted in the face of my own experiences, but also in response to the experiences of others who came into my life because of Ten Things.

Being a parent of an autistic child today requires the courage to think expansively and dream accordingly.

Autism is as complex as it ever was, and the sheer number of autistic children among us—who, barring catastrophe, will become autistic adults wanting to take their rightful, meaningful place in community—demands attention even from those who would rather turn their conscience and public dollars away. We defend and advocate for our children with more eyes upon us than we did just a decade ago. By conscription, we have become not just advocates, but emissaries. Being a parent of an autistic child today requires not only stamina, curiosity, creativity, patience, resilience, and diplomacy, but the courage to think expansively and to dream accordingly.

The years since the second edition of Ten Things have also seen an explosion in social media communication that’s impossible to ignore. The amount of information and opinion coming at parents of autistic children is a never-ending tsunami of ever-changing, maybe-this maybe-that. There have always been charlatans, hucksters and hysterics among us, but nowadays it is much harder to sift the useful information from the click-bait, the truths from the half-truths and the pants-on-fires. Yet we still have only the same twenty-four hours in a day we ever had. More urgently than ever, parents want and need succinct and easily digestible information, especially at the start of their autism journey. My response has been to update and streamline Ten Things, refocus on the basic and the essential, with a new and robust emphasis on honing one of the most important powers you have: the power of choice, and how to use it to make the best decisions for your child from amidst the array of alternatives and possibilities that extends from “no choice” to “overwhelming number of choices.”

Thus, a third edition of Ten Things, faithful to its core being but speaking to our changing times. That core is the timeless, borderless, cross-cultural nature of the ten things.

Throughout the book, I’ve described how my perspective has changed since early editions of the book. These are not “back in the day” musings for the sake of nostalgia, or shades-of-subtle jibes intended to make you aware of how much easier you have it today compared to parents of earlier decades. Far more important than my mere personal opinion, these perspective shifts vividly illustrate how much things change over time, how influenced we can be— for better or worse—when technology, education and medicine advance, stall out, or fail, and how your own developmental journey through the spectrum and the universe shapes your inner being and world view. I think my attitude shifts aren’t particularly remarkable given all I’ve experienced and all we’ve learned about autism over the last fifteen years. But once in a while someone will remark that I’ve “flip-flopped.”

Don't let anyone persuade you that adopting a different attitude based on new experiences and information is "flip-flopping." Quite the opposite, the inability or unwillingness to think flexibly—and to expect it of others—is the kind of rigidity that hurts our kids, and society. (Ironically, that rigidity and lack of flexible thinking is what many people disdain and despair of in autistic children.) We can remain true to our core values while embracing expanded perspective and growth of soul, and encouraging the same in our children. It’s called adapting. It’s called learning, becoming

hopefully wiser, becoming more whole in how we view autism and the challenges it presents to our children. Remember that the idea we often attribute to Darwin, “survival of the fittest,” doesn’t mean the strongest or the smartest or luckiest, but the ones best able to acclimate to change.

Who speaks for the child? It requires a level of presumption to think that any of us can get inside someone else’s head and speak for them. I take that risk, in light of the overwhelming need to understand the world as the child with autism experiences it. It falls on us to grant legitimacy and worth to their different way of thinking, communicating, and navigating the world. It demands that we give voice to their thoughts and feelings, knowing that those voices may be nonspeaking or otherwise nonverbal. If we don’t, the legacy of our children’s autism will be opportunities untouched, gifts forever undiscovered. They are our call to action.

It begins…

As the mother of a young child with autism, I quickly learned that on some days, the only predictable thing was the unpredictability; the only consistent attribute—the inconsistency. Much of autism still baffles us, despite the advances that have been made in our understanding of its spectrum nature. Yet, day to day and sometimes moment to moment, we still find ourselves bewildered by behaviors both new and recurrent that our autistic children exhibit, no matter how hard we try to see the world through their eyes.

Not so very long ago, professionals thought autism to be an “incurable disorder.” The notion of autism as an intractable condition with which no person can live meaningfully and productively has crumbled in the face of knowledge and understanding that continue to increase even as you read this. Every day, autistic individuals show us that they can overcome, compensate for, and otherwise manage many of their autism’s most challenging aspects as part of their fulfilling and dynamic lives. Many of them not only don’t seek a “cure,” but reject article in December 2004, Jack Thomas, a tenth grader with Asperger’s syndrome, got the world’s attention by stating, “We don’t have a disease, so we can’t be cured. This is just the way we are.” Today, social and mainstream media reverberates with the cogent voices of autistic adults who affirm and embrace Jack’s position.

I stand with them. When nonautistic people frame the challenges of autism only through the lens of their own experiences, they unwittingly close the door to the kind of alternative thinking that will profoundly affect, perhaps even make or break, their children’s futures.

Perspective is everything. When I speak to parent groups, I ask them to jot down brief descriptions of their children’s most challenging behaviors, and then rephrase them in the positive. Is the child stand-offish—or able to entertain herself and work independently? Is she reckless—or adventuresome and willing to try new experiences? Is she compulsively neat—or does she have outstanding organizational skills? Does she pester you with endless questions—or does she have a curiosity about her world as well as tenacity and persistence? Why do we try to fix the kid who perseverates but admire the one who perseveres? Both are forms of the same word meaning “refuses to stop.”

My family’s journey across the spectrum began with a basically sweet-tempered but nonverbal child who would lapse into bewildering meltdowns. He backed away from many activities with his hands over his ears. He wore clothes only when socially necessary and didn’t seem to experience pain or cold in a typical way.

A public school early intervention team identified Bryce’s autism at age three. I went through the five stages of grief in the time it took to end the initial meeting. My older son Connor had been identified two years earlier with attention deficit/hyperactivity disorder (ADHD). I already knew about the therapies, the social challenges, the never-ending vigilance—and the exhaustion.

Raw fear motivated me. I couldn’t bear to imagine Bryce’s fate as an adult if I didn’t do everything within my power to equip him to live in a world where I wouldn’t always be around. I couldn’t rid my head of words like “prison” and “homeless.” Not for a nanosecond did it occur to me to leave his future to the professionals or to the ephemeral idea that he might outgrow his autism. These thoughts propelled me out of bed every morning and drove me to take the actions I did.

Jump a few years ahead with me now to the turn of the twenty-first century. At the school assembly, adorable first graders step to the microphone one after another to answer the question, “What do you want to be in the new millennium?” A soccer star! is a popular response. A pop singer! A race car driver! Cartoon artist, veterinarian, firefighter!

Bryce has considered the question carefully.

“I think I’d just like to be a grown-up.”

Applause breaks out and the principal speaks deliberately. “The world would be a better place,” he says, “if more people aspired to what Bryce aspires to.”