I had an oped in today’s Washington Post, about helping Nat register to vote. You can read it here.
This article from Parents Magazine uses some of the research I did on autism adulthood statistics (costs, limited resources, day program/Medicaid info) as well as a brief Nat story and reference to my book. Keep in mind this is a mainstream media venue, serving people who generally know very little about autism, especially in terms of adulthood issues. Parents wanted it to be a call to arms, so its tone is a bit panicky. Still, I believe we need to shock the world into caring and doing something for our guys in adulthood.
Library Journal highly recommends my book!
Susan Senator (Making Peace with Autism) hits the nail on the head once again with this work that shares her continuing journey as the parent of an adult with autism. Parents often worry about who will care for their children should they no longer be able, but that concern lessens once children are grown and out on their own. Parents of children with autism, however, must address their fears and seek answers to such a scenario before and into their child’s adulthood. Senator tells her experience helping her son, Nat, find a living situation that will support his needs and allow him to be a part of the community. She also relates stories of 30 other families, and the solutions they have found for their children with autism. By explaining how she and others in similar situations manage on a daily basis, the author encourages parents to seek new resolutions in addition to available options for their child. Lists of resources and planning ideas are included.
VERDICT: Straightforward and to the point, Senator’s book addresses many parents’ worst fears and inspires them to step up and create a situation and a community that can support their child in their absence. This is a must-read for any parent with a child on the autism spectrum as well as caregivers, siblings, and extended family. Suitable for any library with parenting and autism collections.—Lisa Jordan, Johnson Cty. Lib., Overland Park, KS
CONTACT: Ashley Vanicek
(212) 643-6816 x 288
“In this book, like her others, the wonderful Susan Senator gives voice to those who are too often voiceless—folks with ASD who seek what they deserve—lives of purpose and possibilities.” —Ron Suskind, Pulitzer Prize–winning journalist and bestselling author of Life Animated: A Story of Sidekicks, Heroes, and Autism.
Autism Adulthood: Strategies and Insights for a Fulfilling Life
By Susan Senator
Foreword by John Elder Robison — author of Look Me In The Eye, (Crown, 2007) and the newly published Switched On, a Memoir of Brain Change and Emotional Awakening, (Spiegel & Grau, March 2016)
“In her frank and deeply touching new book Autism Adulthood, Susan Senator shares the intimate details of her journey with her son, Nat, as he takes his first steps toward maturity in a society that offers few resources for people on the spectrum after they “age out” of the meager level of services provided to school-age children. She faces the big issues – housing, employment, relationships with siblings, finding trustworthy caregivers – head-on, and offers practical strategies for giving young autistic people the best chance to lead happy, safe, and secure lives, mapping a pathway to the future that offers autistic people and their families real hope, rather than false hopes built on misguided promises of a cure. By doing so she offers a blueprint for a world in which people at every point on the spectrum are treated as fellow citizens who deserve respect and the ability to make choices, rather than as puzzles to be solved by the next medical breakthrough.” —Steve Silberman, author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity
“As an emotional resource, Senator’s book is excellent.” —Kirkus
“Mothers, fathers, and siblings should read this honest account of family life with autism.” —Temple Grandin, PhD, author of Thinking in Pictures and Emergence: Labeled Autistic for Making Peace with Autism
“From the introduction, Autism Adulthood: Strategies and Insights for a Fulfilling Life will bring you to that dark place parents of young adults with autism fear. But just as quickly, Susan offers practical advice through story-telling and concise, how-to strategies that will leave you feeling optimistic, hopeful, and back in control—all any of us can ask for. A thoroughly readable and important book.” —Arthur Fleischmann, author of Carly’s Voice: Breaking Through Autism
“A brilliant book.” —Tim Shriver, CEO of the Special Olympics, for The Autism Mom’s Survival Guide
“Autism Adulthood is a book I will be recommending to every autism parent I know. Senator is as warm as she is wise, as thoughtful as she is knowledgeable, as compassionate as she is informative. Her rallying cry of “All we can do is love each other” will resound in any parent’s heart. Senator loves fiercely—which means she does everything she can to ensure the best life and future for her adult child with autism. This book will inspire the rest of us to do the same for ours.” —Claire LaZebnik, coauthor of Overcoming Autism, with Dr. Lynn Kern Koegel
Autism. It’s a scary word to some, and one that parents are hearing more and more. Beyond the trauma of the initial diagnosis, the difficulties with finding the right schools and educational programs, and the toll it takes on the whole family looms something far more uncertain and terrifying:
What will happen when my child grows up?
In her new book Autism Adulthood: Strategies and Insights for a Fulfilling Life (Skyhorse Publishing, April 2016), Susan Senator takes the mystery out of adult life on the autism spectrum and conveys the positive message that even though autism adulthood is complicated and challenging, there are many ways to make it manageable and enjoyable. From her own son with autism, now in his twenties, she has learned to “never say never.”
Autism Adulthood features thirty interviews with autistic adults, their parents, caregivers, researchers, and professionals. Each vignette reveals firsthand a family’s challenge, their circumstances, their thought processes, and their unique solutions and plans of action. Sharing the wisdom that emerges from parents’ and self-advocates’ experiences, Senator adds her own observations and conclusions based on her long-term experience with autism. Told in Senator’s trademark warm, honest, and approachable style, Autism Adulthood paints a vivid and thought-provoking picture of many people grappling with grown-up, real-life autism. Senator’s is the only book of its kind, as real families share their stories and their creative solutions.
About the Author
Susan Senator is a writer, an activist, and the mother of three boys. Her books include Making Peace with Autism and The Autism Mom’s Survival Guide. Her son Nat, now in his twenties was diagnosed with autism at the age of three, and she has been advocating for people with autism ever since. She lives in Brookline, Massachusetts.
To request an excerptor to arrange an interview with the author, please contact:
Ashley Vanicek / (212) 643-6816 x 288 / firstname.lastname@example.org
Skyhorse Publishing, Inc.
307 West 36th Street, 11th Floor
New York, NY 10018
Strategies and Insights for a Fulfilling Life
By Susan Senator, Foreword by John Elder Robison
Skyhorse Publishing hardcover, also available as an ebook
On Sale: April 26, 2016
People First or Autism Pride?
You will find in reading this book that I interchange the terms “people with autism,” with “autistic people.” I am well aware of and respect the People First movement—the widespread effort to avoid defining someone by their disability (as in the latter example). A few of the people I interviewed specified that they preferred People First language, and I made sure I wrote their section with that in mind. However, I also know of many people on the autism spectrum who prefer being referred to as “autistic.” This group feels that they are indeed defined by their autism, that their personality is wrapped inextricably in autism, and, furthermore, that this is a point of pride. Hence, my solution is to use both terms interchangeably, because I see the value in both philosophies.
No doubt people will also note that I do not use the term “autism spectrum” too often, nor do I specifically distinguish between descriptions like high functioning, low functioning, Aspie, Aspergian, Aspergerian, pervasive developmental disordered, ASD (autism spectrum disorder), and just plain old autism. This is because the current DSM-V (Diagnostic and Statistical Manual Volume Five) has eliminated many such divisions on the autism spectrum, focusing instead on descriptive designations, and on determining possible features of autism (e.g., social, communicative, behavioral, sensory, or intellectual deficits) rather than labeling kinds of autism. Though there has been much discord among the medical, psychological, and autism communities about these changes in the DSM; many agree that terms such “high-functioning” or “low-functioning” autism are definitely outmoded, as they sprung from verbal competence or lack thereof. We now know that a person can be without verbal speech and still have the ability to express himself successfully. Likewise, someone with verbal speech and a very high IQ might be completely debilitated by depression or social, sensory, or behavioral challenges. So I, too, will stick to descriptions of skills and challenges to give you the full human picture of my subjects.
Speaking of the full human picture . . .
In my narrative, I try to avoid describing an autistic person’s unusual actions as “behaviors,” “stims,” or “stereotypies.” To me, these terms are used negatively to signal the need to control or eliminate the behavior or activity, and I believe for the most part that autistic people need to act the way they act. This includes talking to oneself, flapping, pacing, thumb-sucking—all the things my Nat does with autistic exuberance. I’ve learned from Nat and from more communicative adults with autism that it’s “better flappy than unhappy.”
Here is something I wrote for MariaShriver.com, about one of my favorite organizations, Special Olympics, and one of my favorite people: Nat.
How can we do a better job by our communicationally-challenged citizens, children, neighbors? As we become more and more of an inclusive society and we really start to see all the autistic people among us, we are going to have to do better by them in terms of understanding, connecting, engaging. In my case, I needed to be able to read Nat and get him to tell me what was wrong. This piece of mine — an excerpt from the forthcoming book on Autism Adulthood — came out today on WBUR/Boston’s NPR affiliate.