CHAPTER 1
So You Have Autism
So you have autism, what exactly does this mean for you? It is a fact that more than 1 in about 68 people in the United States has some form of autism. This means that other kids in your school have autism; baseball players, dancers, musicians, and teachers have autism. People in the grocery store, at the pool, and in the library have autism.
There are many things you can do about yourself; for instance, if you are heavy, you can lose weight or if you are slow at figuring out multiplication problems, you can practice your multiplication facts, or if you are particularly talented in art, perhaps you can take more classes. However, you cannot change the fact that you have autism. What you can do is learn more about autism and begin to understand how it affects you and your life. This book is designed to help you do just that, discover and use your strengths to reach your goals and better understand how you learn. Knowing yourself and speaking up for who you are and what you need is called self-advocacy. This book will give you information about your learning style and your autism so you can make a plan for success. Let's take a look at what the experts have to say about autism.
How It All Began
When you were young, your parents took you to your pediatrician for regular checkups. Most likely, during one of the checkups, your parents and the doctor discussed some of their concerns about your development. Autism is considered a developmental exceptionality, so somewhere along the line, your development was different from that of most kids your age and your brothers and sisters. Maybe you did not start speaking in sentences when most kids do (2 years or so). Maybe it was hard for you to look at people when they talked to you or to join in the large-group activities at preschool and maybe you felt uncomfortable when someone hugged or cuddled you. Does any of this sound familiar? These are just some of the things parents keep an eye on as their children grow. They are often called benchmarks or developmental milestones.
When your parents and your doctor began to talk about your development, they began to realize how unique you are. Your parents were probably concerned when they first became aware of your developmental differences. Possibly the doctor talked to them about autism and how people who have autism are sometimes different in some ways than people who do not have autism. A conversation about autism can be tricky because no two people are alike. People who have autism are sometimes said to be "quirky" or different because they do not always see the world like most people do. This is not to say they are wrong, only that they are different. Your parents may not have even heard of autism. They probably had to do some research to better understand what a diagnosis of autism really meant for you and the entire family. In addition to reading what the experts said, they may have talked to other parents of children who had received a similar diagnosis to get advice from them.
They probably also read books written by other parents who have children with autism, books written by someone like Eustacia Cutler, who has a famous daughter with autism, Temple Grandin. Although Temple had a hard time connecting with people and sometimes became very frustrated as a child, she grew up to be a college professor, engineer, and lecturer about autism. She was born in the 1950s when people knew very little about autism — some people even thought she was crazy and wantedher locked away, which is something we would never think or do today. Her mother felt alone and confused when she first learned her daughter had autism. She did not have the support of doctors or friends who understood Temple's differences.
In her book about being Temple's mother, she writes about Temple as a little girl: "Temple is causing storms from which there is no quick tidy-up and no immediate answer. This is a new experience for both of us...." Neither Temple nor her mother really understood why she was having these behavior problems. Once they both learned more about her autism, they worked together so Temple could find better ways to express herself. She learned that she could talk about her frustrations and set up schedules and reminders so she would not feel so overwhelmed or disoriented about her day. She also figured out ways to get the sensory input she needed to feel calmer (more about that later). Today, she speaks to people all over the world about her experiences as a mother of a child with autism.
Doug Flutie, a famous football player, also has a son who has autism. He and his wife started the Doug Flutie, Jr. Foundation to help people with autism by raising money to support research into what causes autism. He even created and sold cereal called "Fluties" to help raise money for his foundation.
When told that you had autism, your parents may have had similar experiences as these parents. They may have been uncertain and confused. They may have turned to the Internet to get information or to books or lectures offered by other parents of children with similar development and behavior patterns. Every family is different. Families are made up of people and each of them is unique. Some families move around a lot, some are skiers, some have red hair, and some have autism. Your family is as unique as all others. Now you are old enough to begin to try to understand yourself and to investigate what it is that makes you you. Everyone has strengths and challenges. You already know that some of yours are quirky or different from other kids your age or from your brothers and sisters. There are times when you just need to be you and cannot muster the interest or energy to figure out how to get things done - times when you might need to curl up inside yourself and take a break or speak out at someone to make your thoughts known. Sometimes those moments can be extra challenging for those who live with you, especially your parents, whose job it is to help mold you to grow up. All kids your age are challenging for parents; they are becoming more independent and do not always feel they need to follow the flow of the family, they keep their rooms messy and do not like to be reminded to do their homework. You can probably see yourself in these examples but your autism often requires even more understanding and patience from your family and more hard work from you. Taking a simple test to help you determine your learning style preferences can give you the tools you need to begin to advocate for yourself. For example, if you discover you learn best while working with others, maybe doing your homework alone in your room is not the best way to get it done or if you work best while snacking, perhaps you can make certain to take an extra snack to math class (of course, after discussing it with your math teacher). Anything you and your parents can do to help all of you understand your autism will make your path to growing up smoother for everyone.
Understanding Autism
Autism has been around for a long time. As early as the 1940s, doctors began to use the term autism when referring to a person who appeared to be very withdrawn. Two doctors in particular were working on the same research, Dr. Asperger in Europe and Dr. Kanner in the United States. However, because of World War II, they never had a chance to meet and exchange ideas, although both had developed a pretty good understanding of autism.
In the 1960s, a doctor in the United States named Bruno Bettelheim wrote books about psychology and autism. In his books, he claimed that autism was caused by mothers who acted cold and withdrawn from their babies. You can imagine how Temple Grandin's mother felt when she read this! We have since learned that this is not true and that autism is caused by a person's genetic makeup and environment, not by a mother's behavior.
Science and research in autism has come a long, long way since then. Now doctors have a good idea of why some people are born with autism. They have discovered that autism is caused by a person's genetic makeup. Everyone is made up of cells and inside every cell is something called your DNA. This is a "map" of your genes or genetic makeup. It helps make us individuals. Scientists have also discovered that autism is more likely to occur in boys and that many people have some form of autism. They have learned that autism is a spectrum disorder, which means it can look very different in different people. Think of the autism spectrum as a tape measure or ruler with an infinite number of tiny lines along one edge. One end of that scale would be considered severe autism. If you had severe autism you might not be able to speak or interact with others at all. You might have significant sensory needs that make it difficult for you to even open your eyes or move about. At the other end of the tape measure (spectrum) is someone who has mild autism, which can also be called high-functioning autism spectrum disorder. This can describe someone who has a lot of language but some characteristics of autism, such as being very rigid and finding it difficult to accept change.
You are one of those ticks along that line, which includes an infinite number of lives. Your autism and how it affects your life places you on one of those ticks. Can people move along the spectrum? Absolutely, as you grow and change and begin to understand your autism, the possibilities are endless for you. The more you understand, the better you are able to figure out how to manage things that might have been difficult for you. For example, as a small child, you may not have understood how important it was for you to learn to wait. Waiting was really, really hard for you and you might have pushed ahead of your classmates or sisters and brothers to get somewhere first. Now you have learned that waiting is OK; you have worked on it and know that you will get to your destination and that you are fine being second, fourth, or even last. You've learned how to manage something which was difficult for you in order to grow. It still may feel uncomfortable for you, but you learned to change your behaviors for the better.
How Did You Get to Be Autistic?
As mentioned earlier, your parents might have taken you to a pediatrician when you were a baby. The doctor or your parents noticed that your development and maybe your behavior were different from other children. Children develop at different rates, but your development was considered to be beyond the differences within the range that doctors usually see.
Your parents and doctor discussed your differences in development and decided to give you some tests to get a clearer picture of just what was going on with you. The doctor probably observed your behavior and asked your parents a lot of questions about how you reacted to the world around you, then took this information and looked at it carefully, comparing it to most children your age. And, based on that, the doctor determined that you had autism. Exactly where you fell along the autism spectrum helped the doctor and your parents develop a plan for just what they needed to do. Did you have the type of autism that causes you to be very hyper-sensitive to noise to the point that you do not want to play with other children? Did you like to play with one and only one specific toy in one specific way? Maybe you needed speech therapy or a preschool designed to meet your special needs where the teachers understood that sometimes you learn things differently and developed plans to help you learn more easily. If you had difficulty playing with friends, the teachers may have developed a behavior plan to reward you for sharing and playing to encourage you to do it more often. If you were especially good at designing and building block designs, they may have made sure to give you extra time to build and explore during center time. When adults forgot schedules, dates, or students' names, did they ask for your help?
Sometimes it is not clear that you have autism until you attend school. School is a place with many, many rules to follow and for some people with autism, this can be tricky. Your teachers may have spoken with your parents, talking about how things at school work and how your teachers can help you learn more easily.
Whatever their decisions, your parents knew they had some work to do and set out to help you to learn in the best way possible.
They had to answer their own questions about your strengths and challenges. They had to do a lot of thinking about words like handicapped, special needs, gifted, and savant (which refers to someone who is extraordinarily good at one thing in particular). Just where did your differences fit in? Where on the spectrum did you fall?
Now you are old enough to think about these things and help yourself better understand your autism. Throughout your life, you may hear people referring to you as "having autism," "being autistic," or "being on the spectrum." Learning about autism and becoming aware of your learning style preferences are among the first steps you'll take toward better understanding yourself and how you learn. Labels are just words for different points of view; you need to figure out what they mean for you.
Autism in the Classroom
When a new school year begins, teachers get a list of the names of all the students in their class. Sometimes that's all they get — a list of names. We know that people are a lot more complex than just their names, but sometimes teachers don't get that more detailed information about their students. However, with time and information from you or your parents about just what makes you you, they will figure it out — they are smart people. Teachers can tell pretty early on when someone does not follow the same path as everyone else (think about that example we read of how hard it can be for some people with autism to wait or how upsetting it can be when the daily schedule gets turned upside down when there is a guest author or school-wide performance). What teachers sometimes have difficulty understanding is why school can be so difficult for you and what simple changes might make it easier.
Our schools are designed to teach many students of about the same age at the same time. This means that second-grade teachers have a pretty good idea of what makes a seven-year-old tick, just as a fourth-grade teacher has a good read on nine-year-olds. While many teachers' present material and change the way they teach by screening students for interests or skills, some still teach all students in their class the same thing in the same way.
That's where you and your autism may run into trouble! We have already determined that you are not like everyone else. You sometimes think and react differently, which means your teachers need more information about you. You can help your teacher learn more about your autism by sharing what you learn about your preferred learning style and what that means for you. Sometimes all it takes for you to succeed is for everyone to agree that you will have the opportunity to do things a bit differently than your classmates.
Classrooms can be very busy places. Teachers try to make their classrooms as comfortable for students as possible. However, sometimes what is comfortable for other students is not comfortable for you. Say the teacher seats you next to the heating or air conditioning unit. Most kids wouldn't be concerned about this — they probably wouldn't even notice it. But you, because of your autism, may have a keener sense of hearing, so the constant hum of the machinery may keep you from hearing one word the teacher says. When this happens, the teacher is thinking, "That kid is not listening to me." At the same time, you are thinking, "I wish I wasn't sitting here where it is difficult for me to concentrate with that humming going on."
Can you see how helpful it could be for you and your teacher when you share what you have learned about your autism and your preferred learning style? That's called self-advocacy. This means understanding what works best for you and working with others to make that happen. It will become a useful tool for you when you learn to use it with respect for yourself as well as others.
Teachers want to be the best teachers possible for all their students, but often they are overwhelmed by the many and different needs in their classrooms. If 25 students are in a class, there are at least 25 differences. All people are individuals; some come to school without solid knowledge of the English language, some might find it difficult to hear the teacher, or some may have difficulty sitting still for more than 10 minutes. Teachers have a tough job with a lot of material to teach to a variety of very different people. The more you can help your teachers learn about your learning style preferences and your autism, the better school will be for you. Ask your teacher if you can meet to discuss what you have learned and together you can brainstorm some strategies.
