The Loving Push, 2nd Edition E-Book

Temple Grandin

• Herausgeber: Future Horizons
• Kategorie: Ratgeber
• Sprache: Englisch

Seitenzahl: 443

Veröffentlichungsjahr: 2022

Beschreibung

Preparing Kids for the Real World and Their Best Selves

The greatest gifts we can give a child are those that help them grow into their best self. Parents and professionals alike strive to guide youngsters in developing a sense of self-worth and functioning in line with their highest capabilities. No matter what specific challenges a child may face, success is reaching the level of independence and engagement in the world they are realistically capable of achieving.

Since the 1st edition of our book, the prevalence rate of children diagnosed as autistic has continued to rise. Greater numbers of kids are transitioning into adulthood with a spectrum label than ever before. Researchers around the world churn out studies, many aimed at learning more about the factors that help autistic children learn and gain skills. Community awareness of autism has risen, and companies and colleges are taking notice.

Leseprobe

The Loving Push: A Guide to Successfully Prepare Spectrum Kids for Adulthood

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817-277-0727

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E-mail: [email protected]

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© 2022 Temple Grandin and Debra Moore

Cover design by Robert Morrow

Cover illustration courtesy of iStock/Getty Images

Interior design by John Yacio III

All rights reserved.

Printed in the United States of America.

Photo of Temple Grandin © Rosalie Winard.

No part of this product may be reproduced in any manner whatsoever without written permission of Future Horizons, Inc, except in the case of brief quotations embodied in reviews.

ISBN: 9781949177749

To our mothers, Eustacia Cutler and Alma Rebecca Moore, who invariably provided loving pushes, some appreciated at the time, others not so much.

In retrospect, we are extremely grateful.

In memory of Oliver Sacks, M.D. (1933 – 2015)

CONTENTS

FOREWORD

INTRODUCTION

INTRODUCTION TO THE SECOND EDITION

A NOTE ABOUT TERMINOLOGY

PART I: THE PATH TO SUCCESS STARTS HERE: RESTORING HOPE

Chapter 1: Real Stories, Real Successes: 8 Inspiring Profiles

Chapter 2: The Three Necessary Components of Your Child’s Success

Chapter 3: How to Break Your Child’s Bad Habits—A Necessary Step So Your Child Keeps Moving Forward

PART II: STRETCHING YOUR CHILD

Chapter 4: Stretching Your Child Just Outside Their Comfort Zone

Chapter 5: What to Do When Your Kid Doesn’t Seem to Care or Is Chronically Anxious

Chapter 6: DANGER AHEAD: Compulsive Gaming and Media Recluses

PART III: PREPARING YOUR CHILD FOR ADULTHOOD

Chapter 7: Teaching Vital Life Skills Needed for Success

Chapter 8: Helping Kids Develop & Prepare for the Real World

APPENDIX

FINAL THOUGHTS

ACKNOWLEDGEMENTS

REFERENCES

ADDITIONAL READING

ABOUT THE AUTHORS

Mother knew that she had to “stretch” and lovingly push me just outside my comfort zone so I could develop to my fullest. She was always urging me to try new things but she made sure there were no surprises, because a sudden introduction of something new was scary. I was lucky to get into a good speech therapy program at age 2½ and after I learned to talk, she always gave me many opportunities to use my speaking skills. In our family, all the children had to do the job of party hostess and host. At age seven or eight, I had to put on my best clothes and greet the guests who had been invited over for dinner. This taught important skills such as shaking hands and greeting people. My two younger sisters and brother also had to greet all the guests and help serve the snacks. In the 1950’s, all children were taught social skills in a much more structured manner. My brother hated being a party host, but later in life, he admitted that it helped him talk to older men. This helped him become a senior vice president of a large bank. Even the normal kids benefitted from practicing learning to greet and talk to new people.

Debra Moore and I decided to collaborate on this book because we are both seeing more instances where fully verbal older children and young adults with ASD (autistic spectrum disorder) are not learning crucial basic skills for socializing and employment. We are both very worried about these youth, because without these skills, they are unlikely to be able to lead successful, independent, satisfying adult lives. If parents, teachers, and therapists of all sorts recognize the danger zones for these children, however, we can turn this around. That is our intent in writing this book.

At many different conferences, I am seeing a pattern of four things that are preventing smart children and adults with ASD from making a successful transition to full independence. Debra has seen these same concerns in the youth and families she worked with. These four things are a result of changes happening in our families, schools, and the world of technology.

1. ASD youth are being overprotected and not given enough opportunities to learn how to do things on their own. Too frequently, parents, teachers, or aides do things for the child that deprive him or her of the opportunity to make mistakes and thereby learn to solve problems on their own. For example, when I give talks, I meet teenagers with good speaking skills, but their parent does all the talking for the child. One time a mom started to ask a question for her child, and I said, “Your child needs to ask the question.” In this and most cases, I have been able to coax the child to talk, even in front of many people. They are then happy that they were able to do it. To help the child keep his nerve, I will warn the audience to hold applause until after the child has responded. Many kids with ASD just need additional time to get their words out.

I think moms often run interference for their children because they are afraid their child will be hurt when he/she makes a mistake. But to learn and grow, you have to make some mistakes. For example, my first attempt at teaching a class when I was in graduate school was a disaster. I panicked and walked out. To solve this problem, the next time I had prepared really good slides so if I panicked, I could fall back on them.

2. Our educational system has changed. Too many schools have removed the hands-on classes where many ASD or ADHD children or teenagers can excel. Classes such as art, music, cooking, sewing, woodworking, theatre, electrical repair, welding, and auto repair expose students to careers. A student cannot determine whether or not he likes something if they are never exposed to it. Patrick Stewart, who played Captain Picard on Star Trek, developed his love of acting when he was 12 and had the experience of performing in a school play.

Our kids need exposure both to open their eyes to options, and also to give them some preliminary experience in different things that could lead to a career. Parents and other adults in their lives have to take over what the schools used to do. We have to get our kids introduced to adults working in fields that could lead to careers. Some really good jobs where kids could excel are computer programming, skilled trades such as auto mechanics, and careers in the arts. Computer coding and the skilled trades are two areas where employers are having a hard time finding sufficiently qualified workers. These are areas of job opportunities.

We can take our children’s special interests and broaden them to many areas with potential for work. For example, if a teenager likes cars, we can use that interest to improve their reading (giving them auto magazines or instruction manuals), their math, and even physics.

3. Too many students with ASD are graduating from high school without having learned basic life skills they need as a young adult. These skills are necessary if they plan to attend college, get a job, or live independently without supervision. Some of these fundamental skills are driving or navigating public transportation, reliably being on time, having good social manners, maintaining basic hygiene, being able to follow instructions, seeing tasks through to completion, and being able to receive feedback appropriately.

We can prepare our children by having them do household chores from an early age, and do paid or volunteer work outside the home once they reach their teenage years. We have devoted a chapter to how to help your child learn these basics so they can succeed at work, in college, and maintaining a household.

4. Excessive video game playing has derailed too many kids. Too often I hear a parent tell me “He’s 21 and he won’t leave the bedroom.” We are now discovering that those on the autism spectrum are especially vulnerable to obsessive gaming to the point of addiction. Our book has an extensive chapter on how to prevent problem video gaming and how to work with it if a child, teen, or adult has already become addicted.

The “Loving Push”: Some More Examples

The purpose of this book is to help parents let go and give careful, loving pushes to get their child to try new things. Before we delve into the main part of the book, I would like to tell some additional anecdotes of getting a fully verbal child to do something new.

One time I was at a dinner with about eight people, and one family had brought their young teenage son who had been diagnosed with ASD. He had good speech, but like many kids who have had many things done for them, he clung to his mom and did not greet me. Since he only liked to eat certain things, his mom had brought take-out food to the dinner so he would not have to eat the food that was being served. After the dinner started, he proceeded to eat the take-out meal with his hands. At this point I said, “This is a formal dinner, use the utensils.” The child immediately picked up the fork and started to use it. He ate the entire meal with utensils and even tried some of the other food.

This is a good example of a “teachable moment.” When the child started to eat with his hands, I gave the instruction on what he should do. The mistake that is often made is for parents and teachers to say “no” instead of giving the instruction, which tells the child what he should do. A common pattern I have observed is that moms sometimes overprotect and dads want to see if the child is capable of more. After the boy successfully used the utensils, his dad gave me a “high five.”

The Importance of Opportunities to Learn Work Skills

During one of my many endless delays at airports, I had the opportunity to talk to a family who had a teenage boy who was really good at doing computer animation. The boy was shy but he was willing to talk to me about his work, and he showed me some of it that was on his tablet. When I have done talks at technology companies, I have seen many adults similar to him; kind of shy, but making a good living. With both parents, I discussed how their son’s abilities in animation could be used to create a summer experience that would teach important work skills. A big problem I am seeing with teen boys on the spectrum is that they are spending too much time alone in their room playing video games or some other pursuit. This kid needed some activities to get him out of the house. All that is needed is a little ingenuity to find something for him to do right in the neighborhood.

One member of the family commented that the pastor at their church had some video of a church picnic that needed editing and titles. This would be a great opportunity for their son, to get him accustomed to doing work outside the home. I suggested that the work should be done at the church offices. It is essential that he learn how to do work that somebody else wants. Mom admitted that she had a hard time letting go, even though the church was close by and he had already ridden there on his bike. I told her she needs to let go because the “birdies” have to learn to fly and develop.

When I was a teenager, I was never allowed to become a recluse in my room. I had to be at meals, attend church, and participate in family gatherings. Sometimes children with ASD have sensory problems that may need some accommodation, but too often the problem is parents who are afraid to give their child a chance to stretch their wings. A quiet office in a church is not going to have anything that would overwhelm her son’s senses, or be dangerous. The opportunity to edit somebody else’s video was an excellent example of a safe work experience outside the home. He will be able to start learning to use his creativity to make some original video for the show titles and edit the already existing footage into a show many will enjoy. This will require accepting instructions and thinking about what the entire congregation would want to see.

Mother had a natural instinct and knew how to stretch me in increments without causing too much stress. When I was a teenager, my mother thought going to my aunt’s ranch in Arizona would be a good experience to try something new. At first I was afraid to go. She gave me a choice. Choices are very important for children with ASD. It’s also essential to remember that sudden surprises can cause great fear. I knew about the trip to my aunt’s ranch months before I went there. I had telephone conversations with my aunt and I was given pictures of the ranch long before I went there. It was not a surprise. Surprises scare.

My choice was I could either go to the ranch for a week or stay all summer. Once I got there, I loved it and stayed all summer. There was always an opportunity for choice, but staying alone in my room in my house was never allowed. Providing choices, combined with advance preparation, gives a child a sense of control so that he can handle new life-expanding experiences.

Our children on the spectrum are growing up. According to Drexel University’s National Autism Report, about 50,000 kids with autism exit high school each year in the U.S. About a half million youth with autism will enter adulthood over the next decade. This book springs from our passion, aspirations, and hopes for these teens and young adults.

We want to increase the odds that your child grows into an adult with a rewarding, meaningful life. We want them to live at their highest and best capacity. We support them in defining and achieving an individualized and productive definition of success and satisfaction. We hope they have the opportunity to express their unique perspectives, personalities, and strengths. To achieve these goals, they need mentors, guidance, and support. They also need structure, appropriate expectations, and frequent “loving pushes.”

We believe that parents, professionals, and community members can greatly influence the odds of this next generation’s success. We can all help guide and inspire our children to become adults with meaningful, productive lives. And if we succeed, everyone stands to greatly benefit.

Throughout history, many of our planet’s most revolutionary advances have resulted from the unique perspectives, brilliance, and creativity of those on the autism spectrum. Einstein’s theory of relativity and Henry Cavendish’s groundbreaking theories on the properties of electricity and heat are two striking examples. Less conspicuous, but equally meaningful, workplaces, community organizations, and families have been enhanced by the exemplary dedication, focus, and loyalty of autistic adults.

From each of our unique perspectives, we’ve witnessed children and teens on the spectrum take a variety of paths as they reach adulthood. We have seen some lives wasted or lived below their true potential. Some teens remain unemployed and living at home, even though they are intelligent and capable of making a contribution. They have not learned the vital skills needed to navigate the adult world. Too many are languishing in bedrooms, in front of their computer, compulsively playing and replaying online video games.

It doesn’t have to turn out this way. Both of us have witnessed many youth on the spectrum find productive and meaningful adult lives. Their journeys came in endless varieties, but had several factors in common. The outcomes didn’t happen by luck, and the successes didn’t happen without the help of others. Wise adults, who provided guidance, nurturance, and direction, influenced them. Most importantly, they were exposed to opportunity. Their accomplishments were the result of persistence and hard work by both the child and others. And they followed a vital rule. Each child and teen built a foundation of practical, real-world skills, and then they found a niche that fit their own personal strengths, passions, and ways of thinking.

As a parent, your aim is to build both your child’s character and competency. You have been attempting that since they were little. If your “child” is now a teen or even an adult, they need you in new ways. Many times in the past, they’ve needed you to protect them. Now it’s time for a loving developmental push. It’s time for new skills on both their end and yours.

Transitioning from adolescence into adulthood brings both unfamiliar challenges and unique opportunities. We want to give parents of younger children pre-emptive help so they can start now to best prepare for the years ahead. For parents of older children, we want to give you information you can use right now to increase the odds of a successful transition to adult life. With more and more young adults on the spectrum entering adulthood every day, we don’t have time to lose.

First, we’ll introduce you to the real stories of some men and women on the spectrum. Ranging in age from 18 to 57, they haven’t always had an easy time of it. Parents or other special people in their lives provided support, opportunity, and guidance. They are now creating meaningful adult lives that embrace and accentuate their unique strengths and passions. Details of the journeys they and their families took will be used throughout the book to help you better envision keys to your child’s success.

We’ll then tell you how to help your child have a positive mindset. We’ll also help you recognize potential minefields and how to work around them. We’ll give you concrete examples showing how to teach your teen specific skills they’ll need in the real, adult world.

The individuals profiled here may or may not resemble your child. Autism is by definition a disorder that occurs along a spectrum, and therefore affects everyone differently. It can result in a wide range of challenges and strengths. Other diagnoses, such as ADD/ADHD, often accompany ASD or are mistaken for ASD due to similar behaviors. Don’t get too caught up in labels. If you recognize aspects of your child in this book, take the ideas and recommendations and run with them.

No matter what age your child is, or what label they have, it’s important to remember that what abilities you see today may not be what you see tomorrow. Adult “success” comes in many flavors, just as each child does. The common denominator is a life lived to one’s own unique, full capacity. Success is not measured or determined by IQ, verbal fluency, or physical ability.

Success is steered by hope, determination, and discovery. Not every child will end up where the individuals profiled here did, and that’s not the point. But all children should have hopes and dreams, and the opportunity to choose and lead meaningful and satisfying lives. With the support, intervention, and “loving pushes” of family and others, these dreams can come true.

Since we published the first edition of The Loving Push, some things have changed. The prevalence rate of autism has continued to increase. There are fewer disparities in diagnoses across racial and economic lines, and children are getting diagnosed sooner. We seem to be doing a better job of raising awareness and of getting resources and interventions to younger kids.

But some things remain the same. When Temple and I talk to parents, we still hear two concerns over and over.

One is that their children are more interested in the virtual than the real world. Parents watch their kids default to games, social media, or mindless browsing instead of real-time, in-person interactions with family members or peers.

They see toddlers who are glued to the screen any time they’re in the car. They know the fastest way to avert a meltdown is by handing a portable device to an upset child. They watch kids of all ages get antsy when they’re away from media for too long.

In the worst cases, they see older kids, teens, or young adults glued to never-ending online games. These are the youth who are often irritable, isolated, and unmotivated. Their habits are entrenched, and parents know that intruding on their screen time results in tremendous pushback and conflict. Often, the parents avoid the fight.

The second recurring concern is the worry that their child will not find a place in the adult world. They can’t envision how a currently disorganized, often inattentive child will be able to develop the skills needed to navigate independent living or a job. Parents raising a child with significant cognitive impairment may be quicker to identify the additional supports that child will require as they age. But parents of a child with fewer or no significant intellectual challenges may find themselves facing a huge chasm between high school and life after graduation.

Kids need more hands-on help than the schools provide. The average IEP often over-focuses on academics to the detriment of real-life skills. Plenty of kids need less scholastic emphasis and more practical experience. This isn’t usually provided systematically, so it falls to parents to create a developmentally appropriate path tailored to their child’s goals and interests.

That’s a tall order, and we hope this book helps.

In this edition, you can expect to hear us speak out even more about the very real dangers that can arise when the virtual world becomes compelling to autistic kids. We share perspectives from parents with inside access to that world. We hope their voices break through the hesitation and anxiety we see in parents afraid to address a child’s problematic preoccupation with the online world.

We’ve also added specific recommendations and resources to prepare a child to live at their highest potential when they enter adulthood. We want smoother transitions to life after high school. We share the factors and experiences researchers say are most predictive of vocational success. We give detailed examples of how common challenges can interfere with job performance and show how these can be worked around.

From pre-school, through middle school, and to high school and beyond, we lay out activities and skills that prepare kids for their next developmental step. We address financial literacy, an oft-neglected but necessary skill set for children, and we include nationally recognized guidelines appropriate for elementary school–aged children.

We discuss in detail how parents can adapt the tools used by professionals to positively shape a child’s behavior and outlook. Finally, in this edition, we’ve added several lists of vocations that are predicted to be in demand in the current economy and yet may not be typical recommendations for autistic youth.

When Temple and I see a child, we get excited. We see possibility. It doesn’t matter if a child has a label or what that label is. We see a unique being, with interests and passions just waiting to be seen and nurtured. We want to help each kid discover what makes them feel most alive. We want to give parents guidelines and tool to assist that child. We hope readers take these ideas and run with them.

A NOTE ABOUT TERMINOLOGY

We want to make a couple of points about terms we have used in this book.

One is that while we use terms like ASD (autism spectrum disorder) and NT (neurotypical), we emphatically believe that no person can be simplified and captured in a label. Even when labels are useful for purposes of description and for accessing resources, they only reflect part of a person, not their essence.

Second, we have frequently used the terms “kid” or “child” in this book. This made sense to us for two reasons: we thought it would be less cumbersome to you than repeatedly reading “child, teen, or adult,” plus we thought parents would understand that no matter what chronological age, one’s offspring will always be your “child.”

We believe that the lessons and suggestions in this book apply to all ages. We encourage you to use them with “kids” of any chronological age. Our goal is that parents, teachers, professionals, and others who care about an individual on the spectrum begin to lovingly guide, push, and mentor them as early as possible, and for as long as feasible.

SCOTT, 28

Former Quality Assurance Tester at Aspyr Media

Diagnosed with Asperger’s

Scott is a good example of how teens can turn themselves around and move from stagnation to action. His vocational journey also illustrates the need for preparing realistically for the workforce and the need to acquire skills that are transferable.

I was diagnosed with Asperger’s when I was 12. I was pretty typical and I had restricted interests and social struggles. School was tough. High school was hell! I thought of it as a grinding mosh pit where everyone is terrible to everyone else. I spent pretty much all of my time just hanging out with a band of guys who constantly played video games. I really loved video games. I turned to them to escape, and then they took hold and I sank into a hole of video quicksand.

Scott could easily have become mired in a world of compulsive gaming. The next part of his story illustrates how much influence others can have in helping a floundering teen find a positive direction.

So I was this listless 15-year-old, and I was thinking I was pretty terrible at everything. I had no idea what I was going to do. Then one evening my Dad took me to a dinner party. Believe me, I would have rather stayed home playing video games! So at dinner this guy turns to me and says, “Figure out what you really love to do. Then find someone who will pay you to do it.” Well, you already know playing video games is what I loved to do. But for the first time it occurred to me that video games are a “product.” And that somebody has to make them. And I asked myself, “Who are the people who make these games?”

Once Scott saw the potential of putting his special interest to good use, he needed guidance to make it a reality.

I talked to my parents. My mom scoured classified ads and finally spotted one for a video game tester. I didn’t even have a resume at that point, but I wrote up everything I could about what I knew about video games and I got an interview! And that resulted in getting a gig each year from the time school let out until it started up again in the fall. For three years I worked summers at a game publisher doing quality assurance.

After high school, Scott started college. Because English had been his easiest high school subject, that’s what he automatically majored in. But he had no idea what to do with it. And more importantly, he almost lost sight of pursuing his special interest. Fortunately, he again listened to someone else’s input.

I had a college roommate who was a fellow gamer. He was from Austin, Texas, and told me “Hey, there are lots of gamers back there!” He told me Silicon Valley, where we were, was big on software but wasn’t the center of the gaming universe. He said Austin was where I should relocate and find a job. He was moving back there himself, so I agreed. Having him there turned out to be critical for both my personal and professional success. I needed a landing pad and a safe, comfortable place to come home to. And the gaming community in Austin is insular. Everybody knows everybody. That was really helpful. But if I hadn’t paid my dues with the summer jobs, I probably wouldn’t have been competitive.

Until just before this book went to press, Scott worked full time as a video game “debugger.” He said his job was the perfect union of his ASD traits and his special passion. The following quote was from before he was laid off from that job.

I get to work on broken video games all day long. I’m part of a cycle of people who each have their own important part in making the games a successful product people can enjoy. You’ve got talented creative people who envision the game, then the coder people who make the characters work, and then people like me who identify the parts that are broken. We enter “bug reports” into databases.

We play one game eight hours a day repeatedly and keep an eye out for anything that is broken. So maybe we spot that the hero’s sword has turned into a pineapple! We send it back to the developer because obviously they got the code string mixed up and missed it. And they send it back to us, but now the hair is purple instead of brown! So we spot that and send it back again. It’s an endless cyclic iteration—extremely repetitive, detail-oriented, and immensely routine. All traits that work great for me!

Even though Scott loved his job, he and his family have learned things they think are very important to convey to others on the spectrum. His mom emailed after Scott was laid off, with advice for other parents.

We’ve realized that quality assurance (QA) testing of video games will almost always be a minimum-wage contract-only position, since there are so many people who want to do that job. There is no career ladder here. Many testers would like to get into creating games, but with the advent of so many academic training programs for that field now, testers may be at a disadvantage compared to applicants who have those specific degrees. It’s also a field prone to booms and busts and frequent layoffs, even for game developers. For people on the spectrum, that amount of change can be stressful. That said, it’s still a good job for a young adult to gain basic job skills like responsibility, attention to detail, organization, and interaction. We’re encouraging Scott to articulate the skills he learned and apply for positions in QA in different industries, where there may be more stability. I want parents who read this book and might think video game testing or QA is the perfect job for their spectrum kid to also realize the drawbacks.

Scott agreed with his mom and elaborated in a phone call. He’s now in the process of expanding his career search and has his own advice for his peers.

What Mom said is true—it’s an industry driven by booms and busts, and the vast majority of entry-level positions are six-month contracts. One would have to be very lucky to find one that’s not. I got very lucky and knew it, because before this job I had two that were just short-term contracts. So I naively (in retrospect) thought I’d have more job security in this non-contract position. But after awhile, I noticed there weren’t many opportunities to move up. Then recently, the company said they were shifting to a “more transparent” system of evaluations and promotions. They said if you showed competencies you’d be a strong candidate to move up to the next tier, but the flip side was that if you weren’t ready, you were let go. My friend was laid off the same day I was.

Scott’s also not sure what to make of some feedback he received in his evaluation. He thought he was doing quite well and that something that had been brought to his attention earlier was no longer an issue.

They said I came across as defensive at work. That was strange to me. I thought that whenever somebody came to me with a question about my work, I’d explain why I did whatever it was. I usually thought I had done what they wanted me to do, so I’d remind them what they’d said to me. That behavior was coming across as overly defensive and they thought I couldn’t take criticism. I got that feedback twice, but I thought I’d done enough to rectify it. At the end of one meeting they even said it was okay and that it could be worked out. I thought it had been fixed. I told them to let me know if anything else is a problem and nothing was said, but in the final meeting they told me I wasn’t ready to move up so they were letting me go, and they also said that five months ago we talked to you about your defensiveness and you didn’t improve. It felt unfair to me and I feel a little bitter.

Scott believes working in video game QA was very good in some ways, and says he learned some essential job skills. But he warns others who are interested in the general field of gaming that there are significant limitations, and he shared some excellent advice he said was passed on to him from a friend.

I don’t know if very many people want to be testing games at age 40, but the fact is it’s a dead end for those with ambitions beyond QA. So now I’m between jobs and looking at more generalized software companies. I found out about a small producer of a global application that sounds interesting and I am in communication with them. My advice to others is to network. The usual advice of “bring passion and your best effort” isn’t enough. That’s necessary for any job. You have to have realistic expectations. And you’ll need to bring independent creativity to the table in this field. Creating games is a very common dream but the reality is somewhat different. My friend had this good advice: “If you want a road to lead you somewhere different you have to change too. If you don’t change where you are going, you will continue going where you are headed.” I think that’s good life path advice.

MARINA, 33

Married and mother of a daughter

Diagnosed with Asperger’s

Marina’s mother recalls their pediatrician being confused by her daughter. He told her that her child might be in and out of prison or spend her life locked in a mental institution. He bluntly proclaimed that Marina would never be able to take care of herself.

So I feared for her safety and her future. I was afraid she could never be sympathetic to others and that she’d stay dissociated from people, society, and the basic rules we have to follow in order to succeed in life. Everything was black and white for Marina. There were no grays, no in-betweens, and no middle ground. If something didn’t catch her interest, she would not participate in or care about it. She had no friends and couldn’t read people’s social signals, gestures, or even their words. She didn’t hear complete conversations.

Marina recollects being depressed and anxious for as long as she can remember. As a child she struggled with loud noises and didn’t want to be touched. She would pull away or make a “mean face” if someone unexpectedly touched her. She found most people shallow and felt like they knew hidden “crazy algorithms or secret formulas” that she had no clue about.

School was hard for Marina. She was afraid of both kids and teachers. Her mother set out to build her confidence and academic skills at the same time.

We would do spelling drills and I expected her to get A’s because I knew she could. But at first she would spell the word as though she was asking a question. I told her if she said it in a “question voice,” I’d mark it wrong. I wanted her to learn to spell but also to learn to speak with confidence!

I thought it was important for her to analyze, not just obey. I wanted her to develop more than one way of perceiving the world. So I would have close her eyes and pretend she was blind. Then I would hand her something —like an apple—and have her describe it many different ways, asking, “How do you know it is an apple?” She learned to use all her senses and to figure things out on her own.

I also wanted her to learn to analyze people. I told her that her teachers were smart, but they were just people, and all people make mistakes. I told her to obey them (and me, and Sunday school teachers) when they asked her to do good things. But I also told her to think for herself. She started analyzing her teachers without realizing it.

Later, when she was older, she and her sisters used to take really long walks through different neighborhoods. This was after her father and I divorced, and for a time we were actually homeless. We lived in an old van, usually by a public park. The girls would walk to upscale neighborhoods and look in the windows, and they started interacting with the people who lived there. Marina would come back and describe what she had seen. Her curiosity and approach of “analyzing” her world was paying off socially.

Her teachers, however, thought Marina was a “problem” and considered her “rebellious” because she wouldn’t always verbally respond to them. In sixth grade, the principal told Marina’s mother her daughter would no longer be allowed to attend his school because they were unable to help her. Her mother decided to find a different route.

I knew Marina was smart, but her anxiety and daydreaming kept her from learning. I finally started home schooling her. We spent time on the computer, and that suddenly opened a whole new world to her—she could view, learn about, and even buy things! She started reading others’ opinions, got exposure to other lifestyles and interests, and enjoyed educating and entertaining herself through the Internet.

Yet, today, Marina’s mother looks back and wishes she had done even more.

I wish I had pushed harder. I wish I had forced the school system to help. I wish I had acquired more knowledge to help Marina. I wish I had pushed her a little harder and put her into situations that would have taught social skills—maybe speaking, drama, or etiquette classes. I think I sometimes made excuses for her. I could have pushed her more to explain her thoughts or feelings. All children should be encouraged and nudged to do well. Until something is tried, you’ll never know what a child or adult is capable of. Children will become adults. They must function safely within society.

Marina has built a satisfying life that includes a husband and daughter. She makes contributions to her community and to the family’s finances, and is continuing her education.

I run a volunteer feeding program for the homeless every Saturday. We do it as a family. I also just recently started volunteering at the SPCA. I really enjoy helping people. It makes me feel really good that I am a positive force in someone else’s life—that I’m helping make someone’s life a little better. Having a strong adherence to routines helps me get up and out when I otherwise don’t feel like it. When I’m sick or fatigued I am able to push past that because it’s Saturday and we have to feed the homeless today.

I have always had an interest in astronomy since my childhood. My older sister bought us a computer when I was 14 and she got us connected to the Internet via dial up and AOL. At first we didn’t really understand the Internet—we would just click on whatever links popped up on the home page. Then we discovered the search engine feature.

I started researching anything I had questions about—a very wide variety of topics from the behavior of wolves to boa constrictors, Nile monitors, and komodo dragons, as well as fish and game regulations, gun laws, infectious diseases, neurology, and forensic anthropology.

Then I happened to watch a movie about physics and became interested in that. After further Internet research, I discovered and became fascinated with astrophysics. Right now I’m in my second year at a community college, majoring in physics, and doing well. I still find it hard to concentrate in a classroom though, so I rely primarily on textbooks and the Internet to understand material. I’m really fascinated by the universe and want to transfer to UC Berkeley when I finish here. I plan to major in Astrophysics with a minor in Computer Science.

I take care of the entire bill-paying for the family and it’s my job to plan our budget. I enjoy budgeting and managing our finances. Learning as a kid to create shopping lists and use a calculator paid off. Right now my financial contribution to the family comes from breeding and selling rats—another subject I also learned from various Internet sites.

JAIME, 35

From Coder to Project Manager, to Business Analyst at a large technology company

Diagnosed with PDD-NOS/High Functioning Autism

Jaime has found success with one of the world’s largest technology companies. His work involves almost daily interactions with others, which he still finds challenging. He enjoys the routine of his job and he likes the pay. As he’s been there longer, however, he’s started to wish his tasks were even more technical, and feels that he is not utilizing all of his skills.

Being on the autism spectrum actually helps me in my job. I am meticulous about anything technical. I am also able to view problems and solutions with a completely different perspective than others.

Earlier in his life, Jaime’s school performance looked fine to outsiders, but he knew that he was not putting forth effort that matched his abilities. He managed to get by, and even received some awards because he is very bright. But he wasn’t motivated and often didn’t even bother to read assignments fully.

I was smart and could get B’s in classes without even reading the full chapters of school textbooks. I thought I was “too smart to study.” At the time that was satisfactory to me. I underachieved.

Moreover, he said he was always the social outsider and was subjected to bullying.

I was always the outcast and I was never confident within groups. I got teased a lot. The kids taunted me with names like “cabezon” (big head) and “orejon” (big ears). I eventually learned that the opinions and actions of bullies don’t matter. After gaining that confidence, it was much easier to avoid them.

It probably didn’t help that Jaime struggled with neurological glitches that sometimes made it difficult to process incoming information and to regulate motor skills.

As a child I struggled to process what others were trying to tell me. I was also challenged with motor apraxia—a neurological condition that makes it hard to plan or produce body movements upon request or command. These are still areas that require great effort to deal with. I make sure to really absorb what someone is telling me before I respond.

Now, as an adult, Jaime has been in a live-in, committed relationship for the past four years. He credits his girlfriend as his greatest positive influence. Socially, he says he was always an introvert and still prefers just a small number of friends.

My partner has helped me so much in understanding NT (neurotypical) mentality. She explains the “whys” with logic and rationale in addition to appealing to my sensibilities. With a lot of training, she has helped me perform mundane tasks in a logical fashion, meanwhile acknowledging my unique talents.

Because I find it difficult to understand social contexts and cues, my attempts at increasing my social world have not really worked out well. I prefer to have just a few friends. These friends do not seem to care about adhering to social norms and they accept me for my uniqueness.

Jaime has also struggled with problems in his relationship that resulted from his intense interest in online video gaming.

I enjoy playing online games and it sometimes becomes a problem. My partner noticed that I get too zoned into the game, and she has brought it to my attention. Once I am in the game, I cannot easily leave its grasp on my attention. She has helped teach me how to pay attention to what other things are going on around me in addition to the game.

Jaime lives independently and finds some aspects of adult life easier than others.

I have never had any difficulty living on my own. I manage my money and do quite well at it. I shop for myself but do have difficulty discerning what is fashionable and what is not. I taught myself enough cooking to get by, but rarely do it. My housekeeping isn’t exactly spotless, but my places of residence were never really messy. I don’t notice minor splotches or messes when vacuuming or cleaning the bathroom, but I’ve improved over time in that area.

MARTHA, 57

Clerk in the Science Department at Sacramento City College

Diagnosed with Asperger’s

In my mid 30s a therapist I was seeing told me I might have Asperger’s and I asked him what I could do about it. He said, “Nothing.” At that time there was no Internet and it did not occur to me to research it further. Since “nothing could be done about it,” I thought the diagnosis was useless at the time and just put it out of my mind. Then a few years later I heard about Asperger’s again during an NPR story about Temple Grandin. By then, I was able to go online to learn more. I realized I had finally found the explanation for the difficulties I have had all my life.

A different therapist, who treats others on the spectrum, then confirmed my diagnosis a few years later. I also deal with depression and anxiety and most likely some ADHD.

Martha learned important life skills as a teen and young adult.

My first volunteer work was visiting patients at a nursing home when I was about 16. Later, in my 20s, I helped tutor people who were learning English. I’ve kept up volunteer work throughout my life. For many years I worked with Friends of the California State Fair. I prepared the monthly newsletter and was the board secretary at one point. I have also been active in church and still help out as an usher.

Martha’s family background was not very nurturing, but she recalls two positive influences outside her family. When one became increasingly sexually inappropriate with her, she ended the relationship, but she still credits him with teaching her important life and work skills.

There was a man I worked for when I was a teenager in the 1970s. At the time I needed a job and was going into as many shops as I could looking for one. I would go repeatedly if they said “no” the first time. The third time I went into this man’s shop he hired me, saying he was impressed that I was so persistent. It was a radio and TV repair shop, back in the days when there were lots of shelves full of “tubes” that had to be stored and inventoried. I understood the work quickly and was a natural because it required a lot of attention to detail. I wasn’t as good with customer service, but he taught me how to appropriately answer the phone and interact with customers.

Martha has struggled socially, but at this point in her life has found a comfortable amount of connection with others through her work and with members of her church.

I developed absolutely no friendships during my college days. I have never been in a romantic or sexual relationship. I have had female friends off and on over the years.

Often when I am in a group, I feel that I am invisible. Or that I talk too much and people just tolerate or ignore me. I do not enjoy parties or other group activities and, as I have gotten older, I have learned that I have the right to decline invitations to events that I find overwhelming or where I know I am not going to fit in or enjoy myself.

One advantage to my current workplace is that I have a lot of social interaction with the faculty here, and because it is in a rather structured environment, it is just the right amount of social life for me and not threatening or oppressive. I have also become very bonded with my cat and get a lot of enjoyment out of her closeness and companionship.

Martha’s work has been a success on multiple levels and is a good example of how important a good fit is at work. Later in the book, we’ll tell you more about her vocational journey and its twists and turns. Her example of continually moving forward in spite of obstacles and a serious setback is inspiring.

I have worked in my current job since 1999. I spend most of my time around science faculty. This is the first job I have had where I am respected for my intellect and skills and not resented or bullied for my quirks. Over the years I have gotten very close to most of the faculty and consider them more as family than as coworkers. I also like the fact that I can manage my time at work independently without a lot of close supervision, and that I can come to work dressed comfortably.

I also appreciate that I work later hours so I don’t have to get going too early in the morning. And I appreciate that we have a lot of time off, and that the school year ebbs and flows, so there are busy times which are relieved by quieter times.

COSETTE, 18

College student and aspiring illustrator, currently selling her art on Etsy.com

Diagnosed with Asperger’s at age six

Cosette was referred to Debra’s practice by her pediatric neurologist for further evaluation and testing. Her assessment confirmed a diagnosis of Asperger’s Disorder. Intelligence testing showed Cosette was very bright—her overall intelligence was in the superior range. It also revealed that she was faster and more accurate at grasping nonverbal concepts, such as shapes and designs, than 99.9% of her peers! Now, on the brink of adulthood, she is using this strength to pursue the avocation of illustrator, and at the age of 18 is already selling some of her work online and at anime and comic con conventions.

Cosette started life with many struggles, and is a great example of a child who needed and benefited greatly from some extra help and guidance. Without the ongoing direct influence and direction of her parents, it’s unlikely she would have automatically picked up the skills required for the adolescence she ended up having. It is doubtful she would have been poised for the adulthood that now appears to await her.

Her mother, Stephanie, recalls some of the gut-wrenching beginnings.

Cosette was like a cat when she was a wee one. She only wanted to be held when she wanted it. She hated to be swaddled. She preferred floor time to lap time. She had tantrums and retreated into a “turtle” position when she was upset. She and I had many problems with defiance and anger. When she started talking, she had echolalia and inappropriate speech. She had horrible sensory problems—everything was too loud, too scratchy, too bright, too everything.

Are you familiar with the The Miracle Worker? There is a scene in the movie where Annie and Helen are locked in the dining room while the anxious family hovers outside. Anne finally comes out, disheveled and with egg in her hair, and simply says, “She folded her napkin.” We had many days like that when Cosette was young. Getting through the day sometimes was hard for both of us, but we kept “folding the napkin.”

Cosette’s parents tried many approaches, some more successful than others. Academically, at various points they tried mainstreaming, special education, and even transferring her to a different school. Bullying was a problem. They later found out one of her teachers had been a “yeller” and Cosette had hung in “teeth and toenails” in that noisy class, always exhausted by day’s end.

Therapeutically, everything from stickers and charts to PCIT (Parent/Child Interactive Therapy) and social skills groups was tried. Often Cosette outsmarted the adults and was known to pronounce interventions “time wasters.”

We did the best we could with the knowledge and resources we had. The most important thing we did was and is to love her unconditionally. I like Cosette. She is an amazing young woman.

Cosette currently attends community college, while also accumulating a portfolio of her artwork and selling drawings at local conventions and her neighborhood used bookstore. You’ll read more about the path she took from being a kid in elementary school who liked to draw for her schoolmates, to one that now has her doing commissioned pieces for groups, and most recently, a software company.

DANIEL, 25

Graduate of Brigham Young University, with an M.S. in Math

Diagnosed with Asperger’s at age nine

When first interviewed, Daniel was in limbo between graduating and struggling to find employment in his chosen field. After college he had moved back in with his parents, then relocated to a larger town better suited for vocational opportunities. He moved in with his brother, who was already living there. He just learned that he has been invited to participate in training for a position with SAP, a German-owed software company that operates in over 130 countries.

This company specifically looks for employees with autism, with a hiring goal of 2% of their workforce being on the spectrum. Daniel hopes to use his skills in mathematical data analysis, a key component of the corporation’s services. Daniel says he was always good at math. His father, John, chuckled as he recalled his son once saying, “Math is my first language. In fact, I’ve been doing math my whole life. When I was conceived as a cell, I was already multiplying and dividing!”

His story is an example of how “it takes a village.”

My brother David is good with computers. He inspired me to start teaching myself to program. I was raised Mormon. I was in the Boy Scouts, which is really integrated with our church. Becoming an Eagle Scout is fairly rare, but it was expected. The church had camps where you work on your merit badges and where they don’t have Internet—that helped a lot. Later a family friend helped me get a job tutoring. When I was in college, my parents talked with my professor once weekly and that helped me stay on task.