Getting a Life with Asperger's: Lessons Learned on the Bumpy Road to Adulthood - Couverture souple

INTRODUCTION

Our experience as parents of a child with autism has made us better parents and better people. Eric has taught us patience and to accept difference. He has a knack for doing typical things in atypical ways. It seems like he is telling us, “Have patience. My way may take longer, but it will get the job done!” May that always serve him well. Jason, Eric’s older brother, reminds us, “Hey, Eric may use his fork backwards, but he still gets the food into his mouth!” Jason is a fantastic role model and has a unique connection and dedication to Eric that we hope lasts their lifetime. If you watch and listen, then your child with autism will teach you. We hope Eric will attend college. He has talked about wanting to be a teacher one day. We are grateful for all we learn from Eric on a daily basis.

Eric is now seven years old. He is a true free spirit. He is the most happy-go-lucky person you will ever meet. You want to be him. If society did not apply pressure to march in the typical parade of life, then Eric would float, fly, and flutter as the very best colorful butterfly he could be!

What we do know is that he has made tremendous progress and the future looks bright. At first, there were many concerns about his ability to function in the world. Would he talk, could he connect, will he be happy? We still worry about those things, but now we are excited to see what kind of person he will become in adulthood.

—Stacey and Brian Orzell

Many of my childhood memories are intertwined with trauma due to my inappropriate, often bizarre, behavior. Ninety percent of my actions were motivated by the justification of “I just wanted to see what would happen.” My nickname at summer camp was “Jesse the Troublemaker.” One afternoon, the bus transported a group of six-year-olds and me to a lake infested with turtles and shimmering sunfish. I darted to the exit at the back of my bus with the colorful emergency insignia and wondered what would happen if I pushed the handle in a counterclockwise direction. Like the man wielding a sledgehammer to flaunt his strength at a cheap carnival, I wanted to show off and attract an audience. A siren blared as a frantic counselor pushed the lever back to its upright position. I cried my eyes out as she grabbed my wrist.

“What are you doing? Don’t you know you could have fallen out and been left behind?!”

This behavior erupted like a case of hives and then receded without a trace. I loved “making things happen” and relished the power to manipulate adults like marionettes with my antics. Adults were also in the dark as to why I was so different and recklessly exacerbated my social troubles by finding creative ways to seize negative attention.

Think back to your own antics and laugh once in a while because it is healthier than dwelling on the shame. What did you do for negative attention either on purpose or because you did not know better? A woman recently told me about her nephew who was disciplined after knocking down a teacher the day he chose to walk sideways through the entire school like a crab. Only the Asperger’s mind could come up with such brilliance mixed with pointless mayhem. Unfortunately, it often takes years for brilliance to become the dominant factor. A cache of scathing criticism has damaged some of us into not giving ourselves the freedom to be unique and embrace the fundamental advantages of being on the autism spectrum.

Until I was diagnosed with autism at the age of fourteen, my bad behavior was chalked up to immaturity. All that changed when I received the diagnosis. Suddenly, the psychiatrist who had always reminded me of that villain from Raiders of the Lost Ark gave me the perfect explanation and a carte blanche for all kinds of misbehavior when he said, “Jesse, I think I know what is going on with you. You have something called Asperger’s, which is the mildest form of autism.” After that conversation in the psychiatrist’s office, I viewed high-functioning autism as a two-year-old brother still in the babbling, parrot stage of childhood development. He was the perfect scapegoat as someone too innocent to get into trouble and not verbal enough to defend himself against false accusations. A child will do just about anything to avoid consequences and responsibility. Therefore, this psychiatrist gave me the perfect gift that allowed me to “get away with murder” for the rest of my youth.

As I got older, transitioning into my teen years and twenties, I came to see that inappropriate behavior was no longer something I could easily blame on Asperger’s syndrome. Others did not dismiss my comments or actions as simply quirky, cute, or different. Now they were creepy, troubling, and not acceptable.

Welcome to the Real World

When I was a kid, the worst that often happened as a result of inappropriateness was earning a detention or scolding from an adult. Now consequences seem to have a nuclear half-life and bouncing back is a long-term process. All of a sudden, the inappropriate pursuit of women or having a meltdown at a job site were serious actions followed by brutal consequences. These are lessons I learned the hard way.

The process of becoming an adult isn’t easy for anyone, whether they are on the spectrum or not. It’s a slow shift in attitudes and priorities, which often comes with a steep learning curve as we try to understand what others expect of us and what we want for ourselves.

Everyone is different, but if you happen to be on the spectrum, it is highly possible that you are also trying to break away from youthful behavioral patterns that are no longer serving you well. On bad days, the acrid memories bounce around my head of those times when I was punished due to an inability to understand boundaries. We have the proclivity to blurt out comments without considering the comfort zones of others. Perhaps it wasn’t entirely our fault, or perhaps it was. The process of letting go is a hobbling marathon, and the tendency to dwell is often at the surface. These feelings remain stagnant like murky groundwater in a Florida marshland, and it does not take much for these emotions to rise to the surface as though an underground volcano has become active.

Each of us deals with our demons in a different way. Some choose therapy or explosive tantrums, even though a temper is the only thing you cannot get rid of by losing it. Others are dependent on video games to experience the thrill of virtual victory and subsisting on the diet of routine, family support, or disability payments. Some have jobs that are occasionally interrupted by misunderstandings, but there is a niche that has been carved. Others are veterans of job terminations due to a mixture of poor luck and repeating the same behavioral patterns responsible for such devastation.

Are you the beautiful, but spacey, woman whose exotic features became a double-edged sword? How could someone so talented and intelligent have such trouble showing up to places on time or carrying on a conversation? This book may not profile your struggles as much as it should because it is written from the point of view and experiences of an adult male. But the mildness of your differences may have prevented you from obtaining the services that could have shaved off some of your suffering. Hopefully you also see your beauty and talent that is reflected in such celebrities as Daryl Hannah and Susan Boyle, who recently opened up to the public about their own diagnosis.

Or are you like me—also struggling to build your adult life after a rough start? Were there fewer resources? Do you continue to make strides but still harbor bitterness for what does not exist? If you are lucky, any bitterness is serving as an accelerant toward earning the life you are meant to enjoy. And you could be the overcompensating Aspie who is holding things together with a stable life or maybe even a successful career and family. You have to work harder to say the right things and the labored self-control is manifested as being uptight . . . trying too hard. You are determined to hold on to what you have built and fear it may disappear like most entities that shimmer for a while. Or perhaps you are the quintessential cool uncle, the perfect babysitter, because you are happy to get down on the floor to play with toys.

I think there is “aspie” in all of us.

—Michael Buchanan, author of The Fat Boy Chronicles

We Are Not Alone

In reality, Asperger’s syndrome is all around us in the guise of coded messages that rise like illuminated, 3-D digits in A Beautiful Mind. There are the obvious “closeted” cases in the form of Sheldon Cooper on The Big Bang Theory or Abed Nadir on Community, but sometimes I wonder whether SpongeBob SquarePants is also a carrier of our uniqueness for the following reasons:

   · He has the most benevolent intentions of any fictionalized entity but constantly lands in trouble while inadvertently endangering lives.
   · SpongeBob is oblivious to personal boundaries and is even guilty of activities that are illegal in the real world such as entering his neighbor Squidward’s house without permission to surprise him in the middle of the night.
   · His routine is set in stone with an entire wardrobe consisting of the same outfit every day of the week.
   · The animated and porous marine organism is vulnerable to being taken advantage of and sets his standards lower than he deserves by working at the same underpaid job with a tyrannical, penny-pinching boss.
   · SpongeBob is obsessed with catching jellyfish and worshipping two has-been, geriatric superheroes named Mermaid Man and Barnacle Boy. These special interests often take the place of more adult pursuits such as romance.
   · He is honest to a fault and incapable of lying.

The qualities we are sharply berated for actually exist in plenty of others who are somehow more respected and lionized in our popular culture. But their conduct is much worse and somehow they receive more of a break than us. Or they seem to bounce back sooner. It is funny and frightening at the same time in a Lewis Carroll–like universe of nonsense. Have you ever witnessed a celebrity behaving badly and thought to yourself, “Even with my case of Asperger’s syndrome, I would never do that!”

I wrote this book to help ease the transition to adulthood with Asperger’s. Growing up is not a smooth process, but it also offers us freedom and a chance to create the life we truly desire. I am not a therapist, doctor, career counselor, relationship expert, lawyer, or other licensed professional. However, I am living with Asperger’s and doing the best I can just like so many of you. As you read further, I am hoping you will find new strategies to do the following:

   · Work for the life you deserve.
   · Advocate for yourself, and also forgive yourself when missteps occur. Educate others in the hopes that some will also have compassion for your past blunders.
   · Strive for full, meaningful employment to the best of your ability. We have a disability, but are not disabled. Asperger’s should never stop us from maintaining employment even if our choices are not ideal. The rate of unemployment for those on the autism spectrum is between 80 and 90 percent. We are capable of doing much better than this, especially considering so many of the qualities of those with Asperger’s are perfect for the job setting.
   · Know when to hold on and when to let go. This is something that you will have to learn on your own, but clarity will eventually come when vestigial baggage or rituals seem to usher more grief than positivity into your life. (And when you succeed in doing this, perhaps you can give me some tips as we navigate this path together.)
   · Share what you have learned with others on the spectrum, especially the next generation. Yes, many of them have access to stronger resources and more awareness than we did in our childhoods. Nonetheless, counseling our younger peers while speaking to them without judgment or condescension should be our lifelong duty.
   · Always have a goal in mind and pursue productivity, especially during times of stasis. “Idle hands are the devil’s workshop.” I am not talking about scheduling your life like a CEO, but trouble tends to find us when we are unfocused, as we turn to activities that are not always conducive to success.
   · Work with the neurotypical population, not against them, as we all unite to reach our full potential. Regardless of what has happened in the past, we need each other in order to thrive.

We have a series of accomplishments to be proud of and deserve to show the world who we really are. We inhabit integrity and innovation, and will hold on to the right things. In some cases, we faced the same challenges as any other young adult without significant social challenges. But in other cases, our suffering seemed too draconian and some societal education would have made a dramatic difference. If you are bitter and cannot move past it, please think of your future as the first warm days of spring after the most brutal of winters. Eventually, the cracks and damage caused by its wrath will heal, and we will end the cycle by sharing what we’ve learned with others.

We have much to look forward to as we become architects of our own progress . . .

THE ROAD OUT OF LOSERVILLE STARTS HERE

I looked around my room in the fall of 2007 and saw nothing beyond a static museum whose appearance was barely altered from my high school years nearly a decade earlier. It was a testament to inertia and arrested maturity. To the left of my Disney figurines was a rotting corsage taped to the wall like a memento from Miss Havisham’s mansion in Great Expectations. At one point, it was in full bloom and pinned onto the tuxedo of a young man on the cusp of leaving high school for a fresh start. But there was no fresh start in college, and like many of us with Asperger’s syndrome, I waited in that room for too long as realities improved at a glacial pace. This was the first sign that I had entered the state of purgatory feared by many of us suffering from any type of social challenge. I had crossed the border into “Loserville.”

The floor had become a patchwork quilt of soiled boxer shorts, and the bed was a permanent holding station for rancid socks. The only thing that sustained me during that period was a twelve-hour night-shift job at a computer manufacturing complex, where I subsisted on a cocktail of Red Bulls and deli food. This was followed by an eight-hour nap from 7:15 a.m. to the late afternoon. Happiness came in weekly spurts when the check finally arrived. Money never buys happiness, but it sure helps to create a superficial euphoria, for at least a little while.

Your stint in Loserville will possibly be exacerbated by relatives who cower behind good intentions or concern about your well-being. But their tone seems to point out your perpetual failures and...

Praise for Getting a Life with Asperger’s

“Jesse Saperstein’s straightforward, frank advice on the methods he used to make a successful transition to adulthood make this book essential reading for individuals with Asperger’s or high-functioning autism.”
--Temple Grandin, Ph.D., author of The Autistic Brain
 
“Go get a life!  That’s what they told young Jesse Saperstein, growing up in New York twenty years ago.  That may sound easy to you, but Jesse has Asperger’s, and that request was the challenge of his young life.  He succeeded, and now he’s written this fine book to help others come to terms with difference and find the life they’re looking for.”  
--John Elder Robison, author of Look Me in the Eye and Be Different
 
“With the wisdom of a sage, Jesse Saperstein shows us how his education at the ‘university of hard knocks’ as an individual with Asperger’s Syndrome has propelled him toward leading a fulfilling and productive life.  A must-read for anyone wanting to learn more about Asperger Syndrome.”
--Stephen M. Shore, Ed.D. Professor of Special Education at Adelphi University
 
“As Jesse Saperstein makes clear, with the right tools a young person can become ‘architects of our own progress.’ Parents and educators of teens with Asperger’s would do well to read this book and use the advice to prepare youngsters of today to become productive, connected and happy adults. This is a great book to offer to the youngsters to read as well. Kudos to Jesse for this great sequel to Atypical!”
--Chantal Sicile-Kira, author of Autism Spectrum Disorder
 
“We know Jesse is a wonderful writer and motivational speaker. But from my perch, this book proves his bigger contribution as a trailblazing guide, armed with a bright and important flashlight. With his honesty and insight, he’s illuminating a path for millions of people on the autism spectrum, and for their friends and families.”
--Bill Ritter, Anchor, WABC TV Eyewitness News, New York
 
“Once again, Jesse Saperstein lights the way for those living with Asperger’s Syndrome. Getting a Life with Asperger’s is a priceless example for those living with Asperger’s, their families and to any of us who want to claim a bigger, fuller and more complete life.  This book and his perspective could change people’s lives.”
--Charles Perez: Former ABC Anchor, Reporter and Talk Show Host
 
“An invaluable, insightful, genially pragmatic and deeply touching road map for all those with Asperger’s Syndrome...and all those with someone in their life so challenged.”
--Rupert Holmes, multiple Tony Award-winning composer and author
 
“It is reassuring to know that my young grandson, diagnosed as being on the autism spectrum, now has an opportunity to read a book that may guide him into adulthood.  Jesse Saperstein gives insight into the challenges he faced growing up with Asperger’s, while offering ways to overcome these challenges.   His profound words of wisdom can teach all of us how to live a successful life in the face of adversity.”
--Carol DiPaolo, AIDS Activist and Pioneer
 
“Getting a Life with Asperger’s shows readers exactly how to do just that through Jesse Saperstein’s candid and exquisitely composed narrative that’s stuffed full of wisdom and wit. It’s the perfect second act (and let’s hope not the last) to Atypical, his autobiography on life with Asperger’s syndrome.”
--Liane Holliday Willey, Ed.D. author of Pretending to be Normal and Safety Skills for Females with Asperger Syndrome
 
“Jesse Saperstein is an intelligent brave new voice in the autism community.
I am always wiser and happier after hearing him.  He has helped me to
more fully realize the untapped potential of those with autism spectrum disorders.”
--Lois Rosenwald, Founder and Executive Director of Autism Services and Resources, Connecticut
 
“Jesse Saperstein has written a wonderful book. It is clear, helpful, and without adornment. I cannot think of a better resource for people on the autism spectrum or for their families and friends.”
--Henry David Abraham, MD, Distinguished Life Fellow of the American Psychiatric Association, co-recipient of the 1985 Nobel Peace Prize and author of The No Nonsense Guide to Drugs and Alcohol.
 
"Jesse is quite simply a teacher. With his second book he takes us on a journey through the transition into adulthood that can teach not only autistic young adults but contains wisdom that can benefit neurotypical adolescents and young adults as well. Jesse invites the reader to learn from his mistakes with humor, honesty, and concrete advice as he (and they) tries to figure out this "thing called life".
--Kristie Koenig, Associate Professor and Chair, NYU Department of Occupational Therapy
 
“In Getting a Life with Asperger’s, Jesse Saperstein shares his experiences, wit, and wisdom about a road travelled by few but experienced by many. It reminds us that life’s hurdles affect each of us differently, but they can be overcome with effort, understanding, and humor. This book should be on the bookshelf of anyone with Asperger’s syndrome, their parents, teachers, friends, neighbors, and coworkers.”
--Michael D. Powers, Psy.D., Director of The Center for Children with Special Needs, Glastonbury Connecticut and the Yale Child Study Center
 
“This book is a marvelous collection of practical wisdom from a peer who acquired it the hard way; living and learning. As a sixty-five-year-old reader, I can't imagine anyone in our Asperger’s Syndrome community who would not benefit from reading this!”
--Jerry Newport, Asperger’s adult and co-author of three bestselling books in Asperger’s Syndrome
 
"Jesse Saperstein is a trailblazer in the world of autism -- both literally and figuratively. He is forging a new path for all individuals on the autism spectrum and changing the way we perceive ASD, all while helping us look at these individuals’ abilities instead of disabilities. Thank you, Jesse, for being the catalyst that opened my eyes to my son's potential."
--Nancy Alspaugh-Jackson, Autism Advocate, Emmy Award Winning Producer, Author, and mother of son with autism.