In honor of Autism Awareness Month, the Santa Barbara chapter of the Autism Society of America has released a new guidebook for parents. Spearheaded by board president Marcia Eichelberger and vice president Sandy Shove, Autism and Your Child: A Guidebook for Parents offers a concise package of valuable information for parents of children who have been diagnosed with autism.
Autism is a complex developmental disability that typically appears during the first three years of life. The result of a neurological disorder that affects the functioning of the brain, autism affects the normal development of the brain in the areas of social interaction and communication skills. Children and adults with autism typically have difficulties in verbal and nonverbal communication, social interactions, and leisure or play activities.
Ten years ago, one in 10,000 people had autism, according to data from the ASASB. Two years ago, one in 500 people had autism, and last year, one in 250 people did. Today, it is believed that one in 150 individuals have autism. The overall incidence of autism is consistent around the globe but is four times more prevalent in boys than girls. Autism knows no racial, ethnic or social boundaries, and family income, life and educational levels do not affect the chance of autism’s occurrence.
Despite the growing prevalence of autism, there is a wide variety of strategies and treatments being used with varying degrees of success. There is no one-size-fits-all treatment or approach, which makes it especially difficult for parents to access the information they need to help their children.
“I often tell people, ‘If you know one person with autism, that means you know one person with autism,’ ” said Shove, explaining that therapies and treatments that work for one person won’t necessarily work for another.
Part of the motivation for putting together the guidebook was their own frustrating experience wading through the maze of information.
“When Sandy and I, when our children were diagnosed — mine was diagnosed about 12 years ago and Sandy’s was diagnosed about eight years ago — there was nothing available for the doctor to even hand to us,” Eichelberger said. “There was no Web site, there was no support group, there was nothing.”
The guidebook is the result of many years of work “compiling resources, securing grant funding, participating in countywide and tricounty interagency meetings, and inviting input from parents and professionals alike,” Eichelberger said. “We are particularly proud that it is available in both English and Spanish, and is available in both hard copy and on our Web site.”
In addition to publishing the guidebook — which includes sections explaining what autism is, the diagnostic criteria, what to do if you think your child has autism, where to go to get more help, and a particularly moving section called “Voices of Experience,” with parents sharing their personal stories — ASASB recently started its first auxiliary chapter in the North County.
As part of Autism Awareness Month, the ASASB is co-sponsoring the Cambridge Center conference on “Autism: Evidence Based Practices” on Friday at the Santa Ynez Valley Marriott, 555 McMurray Road, Buellton.
“We’ve had an amazing response to the conference,” Shove said.
“This is a remarkable opportunity for local parents and professionals to hear firsthand from international experts in the field of applied behavioral analysis,” Eichelberger said. The conference covers a wide range of topics designed to help parents, teachers and caregivers of people with autism.
Keynote speakers include Andrew Bondy, Ph.D., BCBA, on “Teaching the Language of Emotions to Children with Autism”; Gina Green, Ph.D., BCBA, on “Evidence-Based Practice: What Is It and Why Is Everybody Talking About It?”; Rob Holdsambeck, Ph.D., BCBA, and Hank Pennypacker, Ph.D., on “Adding Precision to Measurement and Reality to Predictions in Treatments of Persons with Autism”; Jane Howard, Ph.D., BCBA, on “Improving the Social and Communication Skills of Children with Autism Using the Science of Behavior Analysis”; and Janet Twyman, Ph.D., BCBA, on “Early Literacy Instruction for Learners with Autism Spectrum Disorders.”
If you think your child might be autistic, click here to check out the list of typical childhood development milestones. If your child has developmental delays, early intervention services are your greatest gift to your child. Most major research on learning concludes that intervention before age 5 has the greatest chance of reducing or eliminating developmental delays, including autism.
The most common concerns expressed by parents to pediatricians before the diagnosis are:
• Lack of speech and/or had words and lost them.
• Child seems deaf.
• Child does not make eye contact with parent or caregiver.
• Child has odd behaviors, including severe tantrums and self-injurious behavior, is difficult to control, engages in self-stimulatory behaviors such as flapping, rocking or spinning.
• Child ignores or does not play with other children.
There are great differences among people with autism:
• Some individuals may exhibit only mild language delays; others may have no functional speech. Regardless of language skills, social interactions are typically a challenge for most individuals with autism. They may have average or above average verbal, memory or spatial skills, yet find it difficult to be imaginative or join in a game of softball with their friends. Others more severely affected may need greater assistance in handling day-to-day activities such as crossing the street or making a purchase.
• Contrary to common belief, many children and adults with autism will make eye contact, show affection, smile, laugh and express a variety of other emotions, although perhaps in varying degrees. Like others, they respond to their environment in positive and negative ways. The autism may affect their range of responses and make it more difficult to control how their bodies and minds react.
• People with autism live normal lives, and some of the behaviors associated with autism may change or disappear over time.
“The parent to parent connection is really critical,” Shove said.