Understanding Autism is On the Rise

April is Autism Awareness Month. Autism, a neurological disorder that causes delays in learning, communication and socializing, is becoming better understood. Ten years ago the only knowledge most people had about autism came from the movie, "Rain Man."

Today it is getting exposure in the news and magazines and many people (even if they are not directly affected) probably know someone with autism. It is entering the mainstream consciousness, but it's still a mystery. Understanding how autistic children think, learn and feel may help demystify the disorder and further increase tolerance and awareness.

The fact is that autism is growing. Today more and more children are being diagnosed on the autistic spectrum - the current figure is one in 166 children according to the Centers for Disease Control. And boys are four times more likely to be affected than girls.

Autism is considered a "spectrum" disorder because each child with autism is different, some have mild symptoms and some severe. Some autistic children avoid any kind of eye contact or affection, which can be especially painful for parents. Some children don't talk until they are 5 or 6 years old, others talk for a short time and then lose their language ability. Because each child is different, they each need different treatment programs.

Most experts agree that early diagnosis is very important. The earlier a child is diagnosed, the earlier he or she can begin interventions, such as speech and behavioral therapies, which can help a child improve. But autism is a lifelong disability with no cure, so children must learn, or be taught to compensate, for their limitations.

"Intervention at any time is beneficial," said Sandy Vought, a clinical social worker with 13 years experience who consults with several agencies on autism. "But research shows, the earlier the better."

There are no medical tests for diagnosing autism. An accurate diagnosis is usually made by a neurologist, child psychologist or psychiatrist using a variety of different screening tools. It is based on observing the child's behavior and questioning parents for the initial diagnosis.

According to the Autism Society of America, those with autism may first appear to have other problems, such as mental retardation or a behavior disorder. Some autistic children today are labeled as mentally retarded, yet a lack of cognitive ability seems to be one of the myths of autism.

"At 2 years old, my son was diagnosed as developmentally delayed and mentally retarded," said Michelle, mother of a 5-year old boy with autism. "He wasn't diagnosed with autism until he was almost 3."

"These kids have normal intelligence and sometimes above average intelligence," said Jane Curtan, special education preschool teacher in Ramona.

"All of them have their own challenges with learning," Vought said. "Many times they have problems processing language and they are more visual learners. They require more visual structure and direction to learn effectively."

Some autistic children have repetitive behaviors, (known as "'self-stimulatory behavior" or "stims") such as hand and arm flapping, walking in a circle, or rocking. Some have severe tantrums, banging their heads against the wall or floor, or crying and screaming all the time. These behaviors can get in the way of learning.

"Early intervention helps to reduce stims," said Zelle Hammond, autism consultant for the Ramona Unified School District. "It lowers anxiety and frustration and helps to address the need in another way.'

Michelle's 5-year-old son has Asperger's Syndrome, a disorder on the autistic spectrum characterized by normal language development but with autistic-like behaviors and delays. When he was 2, he would scream and cry all day. He never pointed and didn't talk. He would hit his head on the floor. Then he received early intervention in the form of behavioral therapy and social skills instruction.

"By the time he was 3, he was a different child," Michelle said. "He understood sign language and could use a PECS (picture exchange communication) schedule. Then he started putting words together. Now he's 5 and speaks four or five word phrases. It's incredible."

Most children with autism experience some form of communication delay. Speech therapy is the most effective intervention, but speech therapy isn't just about teaching kids to talk. It's about helping them to communicate which may mean sign language, picture schedules or other technological devices.

"Every child's struggle with language and communication is different," said Karyn Searcy, speech language pathologist and director of the Crimson Center for Speech and Language. "It depends on what kind of speech disorder. One child may have difficulty producing sounds, but he can use sign language and shows the desire to communicate basic concepts. Another may have an auditory processing problem. Most kids who aren't talking, will be speaking by 6 or 7 years old,"
Will, 3, does not speak but he knows all his colors, shapes and animals. He does not have any excessive behaviors. When he was an infant, his parents thought he was just quiet and easy-going.

"Will has progressed so much since he began receiving services," Will's mother said. "Prior to intervention, he didn't know how to play appropriately. He would throw most toys he was given, he didn't seem interested in the world around him. Now he's much more aware. He signs and takes my hand and leads me places. But he still isn't talking and that concerns us. He's been diagnosed with verbal apraxia, which is a problem in how his brain is sending messages to his mouth."

Sensory processing is another area of difficulty for autistic children. Many children are sensitive to things in the environment, such as bright light, loud sounds, strong smells or the touch of certain objects. Some children may find tags in clothing very irritating or the hum of fluorescent lights distracting. Autistic children have trouble processing and filtering all the different sensations and may become overwhelmed and frustrated.

"Most kids on the spectrum have some kind of sensory processing problem," Vought said. "Temple Grandin (a well-known animal scientist, university professor and author, who has autism) said, 'Imagine feeling the hair on your head and the seat you're sitting in and hearing an overhead fan and try to concentrate.' You wouldn't be able to and you'd have a lot of anxiety because of it."

"What people don't understand about autistic kids, is how difficult things are for them," Michelle said. "They look at a child and see that he can walk and talk and ride a bicycle, but he can't think and process information like other kids. It's an invisible disability. Sometimes kids get in trouble for things they can't control."

Social situations cause anxiety for many normal people but they can be particularly troublesome for children with autism. They have problems with reciprocal conversation, with understanding how others think and feel, and with reading body language and social cues.

"Acquiring social skills is the most difficult thing for them," said Hammond, who runs six social skills classes in Ramona.

"The home and/or school-based programs must target the deficits of each child," Vought said. "There should be some component that addresses social deficits and it should be a strong behavioral and communication-based program. Parents must be trained and involved in any program."

Despite their limitations, children with autism continue to grow and progress. Some can memorize and recall volumes of information on subjects of interest. They go to school, make friends, some even graduate college and get married. Children with autism are capable of amazing things. There may become artists, musicians, scientists or authors. The outcomes today are far more positive than they were 10 or 20 years ago.

"These kids are getting better acknowledged and appreciated," Hammond said. "People are starting to look at their abilities and talents, not just their limitations."

Yet most involved with the disorder agree that more needs to be done. More funding for research, more resources and training for parents, better training for teachers and other professionals - early intervention for every child who needs it.

"Services need to be more readily available to families so they know what to do when they get the diagnosis," Vought said.

"You have to try everything (when teaching children with autism)," Curtan said. "One thing may work for one child. You have to see what's going to work with every child."

For more information, contact the San Diego Regional Center at (858) 576-2996 or the San Diego chapter of the Autism Society of America at (619) 298-1981 or visit www.sd-autism.org.
Understanding Autism is On the Rise