Introduction

Living with a new autism diagnosis can be hard, but you don’t need to go through it alone. We

understand at Autism Society of America, Santa Barbara. We are parents of children with autism spectrum disorders and have been where you are – shocked, sad, or even relieved to finally have some answers. We have learned to find a well of strength inside ourselves that we didn’t know existed. We lean on one another for support, advice, and encouragement. We commit ourselves to the ongoing education and growth of our precious children. We did not choose to be a part of the autism community, yet we have learned to accept it and have discovered that there are wonderful people and rewarding experiences to be found, right alongside the chaos and confusion that living with autism can sometimes bring. We are here for each other and we are here for you. There is life after an autism diagnosis, and a joyful and rich life, at that. ASASB works tirelessly to help individuals with autism and their families. We also reach out to

What is Autism?What is Autism?

professional caregivers, agency representatives, researchers, policy makers, government regulators, and teachers, who are all members of the world of autism. That is the real strength of ASASB- good people who want to help make things easier and more successful, so that each child can live a happier, more included, more productive life. In this packet, we’ve put together some general information about autism and the public agencies that serve our children and families. We’ve also added personal stories from parents, some who have succeeded and some who still struggle. If anything you read raises a question, please contact us right away. There’s also an application for membership in Autism Society of America, Santa Barbara. The more families we represent, the louder our voice will be, and the better we will serve all our children with autism.

Copyright 2007 Autism Society of America, Santa Barbara. All rights reserved.

What Is Autism?

Autism is the fastest-growing childhood developmental disorder in the United States,

affecting as many as one in every 150 births (source: Centers for Disease Control and Prevention, 2007). It is more common than pediatric cancer, diabetes, and AIDS combined (source: autismspeaks.org). Autism is a complex neurological disorder that interferes with normal progress in language, creative thought, social interaction and an ability to connect

with surroundings. People with autism live in the world in a different way. Most children with autism have a hard time coping with changes in their daily routines. Related problems may include hyperactivity, self-injurious behavior, difficulty sleeping, unusual reactions to light or sound, eating disorders, and digestive problems. Autism is not a new condition; both Albert Einstein and Isaac Newton had autistic behaviors. It occurs across all racial, ethnic, and social groups and is four times more likely in boys than girls.

Autism usually affects individuals in three key areas:

1) Communication (verbal and body language)

2) Socialization (friendship skills, cooperation, and social traditions)

3) Imagination (flexibility of thought and behavior)

You may hear different words used to describe children within this spectrum, such as autistic-like,

having autistic tendencies, on the autism spectrum, with high-functioning or low-functioning autism, Asperger’s Syndrome; but more important than the words used is understanding that, whatever the diagnosis, children with autism can learn and show great improvement with the right treatment and education. Routine, stability, and well-planned, flexible solutions are very important to the affected child and family’s well being. Early intervention is best, but treatment can improve the symptoms of autism at any age. Therapies should be planned for the child based on his or her needs. Autism impacts each person differently – where one child may struggle with speech, another child may struggle with behavioral issues. Knowing how autism impacts your child will help you decide what therapies and programs will help the most. Individualizing your child’s treatment

program is not only important but also protected by law. Knowing your child’s strengths and weaknesses will help in choosing services and treatments.

What Are the Common Signs of Autism in Children?

Autism is called a “spectrum disorder,”

which means there is no one trait that defines the condition. People might have any combination of autistic behaviors, from mild to severe. We probably all know people who have poor eye contact, don’t pay attention to body language, can’t take a hint, etc., but since they are normal in other ways, they are not considered “autistic.” Some people mildly affected may show only slight delays in language, but more problems with social interactions. They may have a hard time starting or carrying on a conversation. They may seem to talk at others instead of with them; for example, talking at length about a favorite subject and not letting anyone else get a word in. Some children may not be able to speak at all. Some may have self-stimulatory behaviors (such as hand flapping, humming, repetitive behaviors) or rarely, may try to hurt themselves or others.

Characteristics of autism may include:

• Wanting the same daily schedule, toys, type of clothes or a demand for “sameness”• Trouble holding a conversation• Repeating words, phrases in place of normal language or conversation (known as echolalia)• Problems expressing needs, using gestures, pointing or leading instead of words

• May act deaf or not respond to verbal cues• Lack of pretend play or imitation• Unusual mix of abilities; for example, lack of muscle coordination combined with the ability to read at a very young age• Odd play, such as spinning objects, using toys for something besides their intended purpose, an odd attraction to an item that is not right for the child’s age, lining things up.• Not learning from typical teaching methods• Out of place social reactions (i.e. laughing at a baby crying)• Laughing, crying, and/or showing pain for no apparent reason• Noticeably under-active or over-active• Excessive or frequent tantrums• Prefers to be alone; aloof manner• Poor or unusual eye contact; rapid/darting eye movements• Over-sensitive and/or under-sensitive to pain• May respond badly to crowds or not able to mix well with others• May not like to be hugged or cuddled• Sensitivity to loud noises, tags in clothes, buttons, zippers, coarse clothing, lights, and smells• No real fears of danger• Uses peripheral vision to track items; for example, watches a toy car roll out of the side of their eye instead of focusing both eyes on it• Very picky eater (eats only a few foods because of the texture or color: for example, bread, chicken nuggets, pasta, and milk)• Severe food allergies• History of chronic ear infections as an infant• Severe stomach issues/diarrhea and/or constipation

Many professionals agree that some behaviors, like many of those listed above, are actually a result

of poor sensory processing. For most of us, our senses combine to help us understand what’s going on in the world; for example, your sense of touch, smell and taste work together as you eat a ripe peach - the feel of the peach’s skin, its sweet smell, and the juices

running down your face. For children with autism, the senses may be thrown off - they may be over or under active. The fuzz on the peach may actually be painful and the smell may make the child gag. Some children with autism are particularly sensitive to sound, finding even the most ordinary classroom noises unbearable. Two children, both with the same diagnosis, can act completely differently from one another and have varying abilities; in fact, very few children with autism have exactly the same traits.

What are the Different Types of Autism?Autism is one of the five Pervasive Developmental Disorders (PDD), a group of brain disorders defined as causing “severe and pervasive impairment in several areas of development.”

The five PDD diagnoses are:

• Autistic Disorder• Asperger’s Disorder• Childhood Disintegrative Disorder (CDD)• Rett’s Disorder• PDD-Not Otherwise Specified (PDD-NOS)

Each of these disorders has specific symptoms, which are explained in the American Psychiatric

Association’s Diagnostic & Statistical Manual of Mental Disorders (DSM). Families should use this resource as their primary source for information to better understand their child and the professionals, however families should not to try to make a diagnosis on their own.

These are the primary public agencies responsible for assessment, diagnosis, and service planning

for children with autism in Santa Barbara County:

Santa Barbara County Education Office (SBCEO)www.sbceo.org

4400 Cathedral Oaks RoadP.O. Box 6307Santa Barbara, CA 93160Phone: (805) 964-4711Fax: (805) 964-4712

Tri-Counties Regional Center (TCRC) —Santa Barbara Countywww.tri-counties.org

Main Office520 East Montecito StreetSanta Barbara, CA 93103-3278Phone: (805) 962-7881; (800) 322-6994Fax: (805) 884-7229E-mail: tcrcweb@tri-counties.org

No. County Office1234 Fairway Dr.Santa Maria, CA 93455Phone: (805) 922-4640; (800) 266-9071Fax: (805) 922-4350

The local autism community includes a large number of experienced parents and

professionals. Informal support and advice may be obtained from the following sources:

Autism Society of America,Santa Barbarawww.asasb.org

P. O. Box 30364Santa Barbara, CA 93130-0364(805) 560-3762info@asasb.org

Alpha Resource Center ofSanta Barbara,Family First Programwww.alphasb.org

So. County Office4501 Cathedral Oaks Rd.Santa Barbara, CA 93110(805) 683-2145

No. County Office1234 Fairway Dr., Ste. ASanta Maria, CA 93455(805) 347-2775

Online Discussion Groups:

SBATA@yahoogroups.com(This discussion group is for parents only)

SBSPED@yahoogroups.com(This discussion group is for parents and interested professionals)

AcknowledgmentsThis project has long been the dream of the Board of ASASB. As parents of children on the autism spectrum ourselves, our desire has been to create and distribute the type of information packet that we wish had been

given to us when our own children were first diagnosed. It is our sincere hope that we have met that goal.

No project of this scope comes to completion without a great deal of support from a variety of sources.

Primary funding has come from the Autism Society of America, National Office, with additional grant support from First 5 Santa Barbara County. Printing costs have

been underwritten substantially by Santa Barbara Helping Hands. We also wish to thank our tireless office administrators, Wendy Kelly and Vivien Gatpandan, and the many parent and professional readers who offered

both encouragement and fine editorial oversight.

Special thanks to Lisa Ackerman of Talk About Curing Autism (TACA) for her willingness to share

information and resources. Source material for this guide is derived from TACA, Autism Society of America, Coachella Valley Chapter, Autism Society of America,

National Office, Tri-Counties Regional Center, and Santa Barbara County Education Office. Endless thanks to

Chris Giles for his final editing and proofreading work, and to Dinorah Isis Molina for translating the entire

project into Spanish.

All photographs courtesy of Brad Elliott Photography.Many thanks to Maren Lambe Design, and Boone printing.

Autism Society of America,Santa Barbarawww.asasb.org

P. O. Box 30364Santa Barbara, CA 93130-0364

(805) 560-3762info@asasb.org

ASASB Board of Directorsduring the development of ACCESS:

Marcia Eichelberger, Patti Gaultney, Maria Sherlock, Sandy Shove, and Nancy Speer.

This project is dedicated to Jared, Wesley, Jack, David, Ben, and Devin, and to their many peers. Your mothers

are very, very proud of you.

Autism Society of America,Santa Barbarawww.asasb.org

P. O. Box 30364Santa Barbara, CA 93130-0364

(805) 560-3762info@asasb.org