WHAT IS AUTISM?

Basic autism information written for people with limited English proficiency and/or limited ability to understand or read written material on autism.

Imagine a song stuck in your head...and it never goes away.

Imagine people's voices sounding so loud they're like fire engines.

Imagine your soft cotton T-shirt feeling like a burlap bag.

Imagine not being able to feel food in your mouth, or a full bladder.

Imagine someone's simple touch feeling like fire.

Imagine having feeling in your hair and the pain of having it cut.

Image having autism.

WHAT IS AUTISM?

One of the simplest answers to this question is to say that autism is a condition in which the brain doesn't work right. A person's behavior is what leads us to think that something is wrong with the brain. Autism usually appears during the first 3 years of life. Autism gets in the way of normal brain development and affects many areas of a person's life.

Children and adults with autism may have problems relating to and dealing with other people. They may have more problems dealing with some people than other people. This could be because of such things as a person's tone of voice, specific lighting or the way they act. Autism may make it hard to talk and to grow up to be independent. Autism makes it hard to learn things that others learn all by themselves. Autism is found all over the world in every type of social, racial, and economic background.

WHAT ARE SOME OF THE SYMPTOMS OF AUTISM?

Autism is made up of many different symptoms. Some people are affected very severly, while others are much milder. Children and adults who have autism may show a combination of symptoms:

repeat words, or not talk very much or not at all.
not be able to understand emotions (an angry voice or smile).
resist physical contact, or be very friendly, even with strangers.
want to lick or smell everything.
not want to look at you directly, yet look into space for a long time.
seem to act like they are deaf even though nothing is wrong with their hearing.
not know how to play with toys like other children their age.
not play pretend or imitation games (peek-a-boo, sooo big, pattycake).
hit themselves, bang their heads, bite themselves because they don't feel the pain like we do.
be described as off in their own world. You may feel like it is impossible to reach your child with autism.
act as if you didn't exist.
laugh and giggle for no apparant reason (or none that you can figure out).
spin objects or spin themselves a lot.
have temper tantrums for reasons that are not clear to you.
want to do things in the same order and same way every day. Changes in routines may result in tantrums.
not like the feel of their clothes and want to take them off all the time or not change them when needed.
only like certain textures of food or not like to eat very much at all.
not recognize himself or herself in a picture.

WHAT CAUSES AUTISM?

THERE IS NO KNOWN CAUSE.

Poor parenting is NOT a cause. Because autism affects more boys than girls, some doctors think that there may be a genetic related reason but they are not sure. Other possible causes may be exposure to toxins, low birth weight or maternal exposure to rubella. No one is really sure and there may be a number of different causes. Many people are studying to try to find out what causes autism.

HOW IS AUTISM DIAGNOSED?

Autism must be diagnosed by an expert. One of the reasons that autism is sometimes hard to diagnose is because the symptoms are so varied. Professionals without a lot of experience may have problems diagnosing autism. A diagnosis may be based on several things:

filling out questionaires about your child's development.
careful observation.
Some professionals prefer to ask you the questions.
Some use more than one way.
Some professionals will ask for complicated medical tests in order to rule out other causes for your child's behavior.

IS THERE A CURE FOR AUTISM?

Right now there is no known cure for autism, but taking action and getting treatment for your child is very important. The sooner a child gets treatment, the better the chances are that your child will be able to make progress. With the right treatment, many of the strange behaviors can be changed. Some different kinds of treatment or therapy include:

occupational therapy
behavior modification
speech and language therapy
auditory training
medications and
special diets.

There is not any one specific type of therapy that is the best for all cases. This makes things even more difficult. However, many parents have found that a sense of humor and a lot of patience go a very long way. It will never help any child to hit or to scream at him or her, a child who has autism is no exception.

Autism is like a mystery. Many parents have figured out parts of the mystery by understanding their kids better. One day all of a sudden you think, well, now I think I know why Jevon makes that funny howling sound. He only does it the day before it snows. You make a big discovery toward understanding your child's behavior. Or, now I think I understand why Marc darts around the room. He is looking at shiny objects. These and lots of other discoveries are waiting for you. Your child will be so much better off just because you do try to understand.

One of the most important things to remember right now is that there are so many other people out there that have already gone through what you are going through. Talking to others will help you understand and feel better about what the future holds.

WHERE CAN I GET MORE INFORMATION?

Autism Society of America, call toll free 1-800-3-AUTISM

Autism Society of Wisconsin, call toll free 1-888-4AUTISM

The Autism Society of Southeastern Wisconsin (ASSEW) is located at 9733 W. St. Martins Rd., Franklin, WI 53132. 414-427-9345

CALL YOUR LOCAL ASA CHAPTER

A local chapter is an organization of parents with children or adults that have autism and professionals who work with them. They understand the difficulties that people go through when they first find out that their son or daughter has autism. There is so much to know, so many different things to deal with : Doctors, schools, diagnosis, medical and insurance problems.

Finding out about how and what kind of help to get for your child are just a few of the many questions you may have. A local chapter does not have all the answers. No one has all the answers, but they do have suggestions, knowledge and experiences that we are willing to share with you in order for you and your family to get going and to keep going. They have meetings and some have activities such as coffees, discussions with professionals, swimming outings, parties and other activities for parents and for the kids with autism. One of the things many parents want to know about is other children with autism. Often a local chapter can give you the opportunity to meet lots of them. They can answer many questions and help you try to find the answers to others. People in a local chapter understand that you may feel scared, unsure of the future, lost or frightened. Call them and they will do their best to help.

PLEASE FEEL FREE TO COPY THIS BROCHURE AND GIVE IT TO SOMEONE WHO NEEDS IT.

RECOMMENDED FIRST BOOKS

Autism Treatment Guide. Elizabeth K. Gerlach. Four Leaf Press, 2020 Garfield St., Eugene, OR 97405. Author is a parent. Book for parents and professionals describes treatment possibilities and lists lots of resources and suggested readings. $6.99 + $1.50 Postage and Handling.

Keys to Parent the Child with Autism. (1994) Marlene Targ Brill. Hauppauge, NY: Baron's. Highly recommended as a first book. Has sections for Grandparents, dealing with other family, friends and strangers. $5.95 available at some bookstores.

A Parent's Guide to Autism: Answers to the Most Common Questions. (1993) Charles A. Hart. Pocket-books, New York $9.00 Hart offers advice about all aspects of treating the syndrome, with the sensitivity and compassion of someone who has lived through the experience.

FAMILIES' STORIES

There's a Boy in Here (1992). By Judy & Sean Barron. New York: Simon & Schuster. Written by a mother and her son with autism.

News from the Border. A Mother's Memoir of her Autistic Son (1993). By Jane Taylor McDonnell. Houghton Mifflin, Burlington, MA or New York: Ticknow & Fields. A classic for people seeking to understand autism. Jane McDonnell is the mother of Paul, a 20-year old with autism. She gives explanations of autism in a family story. Books includes a part by her son Paul.

BOOKS BY PEOPLE WITH AUTISM

Soon Will Come the Light: A View from Inside the Autism Puzzle(1994) and Light on the Horizon (1996) Thomas McKean, Future Education, 424 E. Lamar # 102, Arlington, TX 76011 (817) 277-0727.

Emergence: Labeled Autistic (1986). By Temple Grandin & J.M. Scariano. Novato, CA: Arena Press. Excellent descriptions of the difficulties individuals with autism may have with sensory input.

Thinking in Pictures and other reports from my life with autism (1995). By Temple Grandin. New York: Doubleday. More great insights from Temple.

Silent Words (1992). By Margaret Eastham. Oliver-Pate, P.O. Box 4017, Stations E, Ottawa, Ontario. K1S 5B1, Canada. $20.50 plus shipping and handling. 288 pages. The story of a young man with autism who never talked, but became a published poet. He had autism and apraxia, could not speak, write, or use sign language. The book gives valuable teaching techniques, is a compelling personal story, and provides insight into what it feels like to be autistic.

Somebody Somewhere. (1994). By Donna Williams. New York: Times Books ISBN o-8129-2287-5. A powerful and moving account of a struggle to come to terms with autism. Provides insight into the disability.

Published by the Autism Society of Southeastern Wisconsin
9733 W. St. Martins Rd.
Franklin, WI 53132

Printed with a grant from the Wisconsin Council on Developmental Disabilities, P.O. Box 7851, Madison, WI 53707-7851 608) 266-7826.

Online October 11, 1998

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