January 28, 2005

Local instructor, lawyer develops autism training course

Mother of autistic child provides roadmap for parents

By Van Tieu
Staff Writer

A-u-t-i-s-m: the word strikes fear into the hearts of parents faced with this diagnosis for their child. Unfortunately, it is a word that we hear more and more frequently as an increasing number of children are being diagnosed with this condition.

This high-functioning, 6-year-old autistic child enjoys playing with stickers with friends at a birthday party.

That’s why Antoinette Penton, J.D., a local special education attorney who has worked with autistic students, felt compelled to create and teach a three-part training course entitled, “A Roadmap Through the Land of Autism.” The course will be offered at West Valley College three consecutive Saturdays on Feb. 26, March 5 and March 12 from 9 a.m. to noon.

Penton, an instructor at Evergreen Valley College and an Evergreen resident for 20 years, knows first-hand what it takes to raise an autistic child. She is the parent of a high-functioning, 6-year-old autistic child who was diagnosed at the age of 3.

A graduate of San Jose State University and Santa Clara University Law School, Penton has undergone advanced content study in the theory and practice of Applied Behavioral Analysis and is currently fulfilling her requirements to become a Board Certified Behavior Analyst.

Whether a veteran parent or a parent of a newly diagnosed child, the course will be helpful in covering important progressive stages and answering questions pertaining to diagnosis, regional centers, educational programs, 1:1 aide, demonstrations of Applied Behavioral Analysis and federal legislation that affects families of autistic children.

Defining autism
But what is autism? Autism is generally considered to be a neurological disorder that affects how the brain functions. This is supported by brain scans conducted on people with autism, which show significant differences in the brain structure from that of typical people in the general population.

Autism affects various life areas, which include impairments in social interaction and communication, restrictive repetitive patterns of behavior, interests and activities. Characteristics common to children with autism are difficulty with eye contact, inability to develop relationships with peers that are appropriate to the child’s developmental level and a lack of social or emotional reciprocity.

Other characteristics are due to sensory issues such as sounds or visual senses.

“For example, music might really bother them, it might hurt their ears, like fire trucks and ambulances. Visually, bright lights might bug them. If they’re very low functioning, or don’t talk very much and can’t get their needs across to someone verbally and say ‘hey I’m having this problem,’ they might scream, bang their heads or start flopping their hands against their ears,” Penton says.

In addition, there is often a lack of interest in engaging in activities that other children like, such as playing pretend games, dress-up and imaginative play. The latter is believed to be a result of the children lacking a “theory of mind,” which refers to the child’s ability to put himself in the shoes of someone else and understand that person’s perspective.

“Autism is a complex developmental disability,” explains Penton, “that typically manifests itself during the first three years of a child’s life. It is important to note that autism is a spectrum disorder. This means that while some children may be very impacted by the autism, others are affected only mildly and may at times appear to be of typical functioning.”

Yet what seems common to all autism children, whether they are on the lower or higher functioning end of the spectrum, is impaired social interaction, says Penton. Some children don’t show an interest in engaging with peers or adults. Other are desperately trying to make friends, but don’t know how to do it. As a result, self-esteem issues can arise as the child nears school age.

“The biggest challenge is finding where your child is on the spectrum so you can provide the appropriate interventions and therapy, and even within that you really have to tailor it, or they won’t get the benefit they need,” she adds.

After working with many parents who wished for ways to individualize their child’s interventions and identify where on the spectrum the child lands, Penton compiled what she calls her “Parent’s Wish List.” Those wishes are granted in her training course for parents and caregivers of autistic children.

As a parent herself, Penton notes that questions progress from what are the symptoms? to, once you know the symptoms, what does it mean? Other important progressive questions include where to get children tested or assessed followed by how the testers should be writing the report. And what is a good report?

Improvements through ABA
One of the topics to be discussed in “A Roadmap Through the Land of Autism” is Applied Behavioral Analysis (ABA). Research conducted by Dr. Ivaar Lovaas, a psychologist from UCLA, demonstrated that approximately 47 percent of autistic children can improve significantly through ABA.

ABA therapy uses a system of rewards to teach the children proper behavior. The premise behind the therapy is that a person is likely to repeat behavior for which he is rewarded.

In addition, detailed data should be kept of the child’s performance. This data is then used to determine whether the child is progressing in the program and the level of progress made.

From this information, the child’s program is then updated and moved forward. Lovaas’ research showed that a significant percentage of the children in his study were able to enter regular classroom settings and were almost indistinguishable from typical children.

In addition to ABA, various other techniques have been developed to teach autistic children how to relate more appropriately with people and world around them; however, research needs to be conducted to substantiate these claims. Parents can also develop their own techniques as well.

For example, Penton developed her own teaching style to meet her son’s individual needs. “I tried different things with him to see what would work—little things like putting a cheerio on my forehead to force him to look in the eyes. I just asked myself common sense questions like, ‘How will I get someone to look at me? If I have something on my face, wouldn’t you want to look at it? Of course he started looking and said, ‘Mom, what’s that? Mom, What’s that!’”

New laws affecting autistic children
Another important subject in the training course concerns new laws that directly affect autistic children and their families for better or worse.

A federal law called the Individuals with Disabilities Education Act (IDEA) was enacted to provide protections to parents and children with disabilities in terms of the child’s right to a free and appropriate education.

Under this law, children with qualifying disabilities are entitled to receive education and related services paid for by the child’s school district. This may include ABA, speech and language pathology, occupational therapy, physical therapy, etc.

Yet Penton explains that IDEA was recently changed, and “many of the changes that resulted are not beneficial to parents and their children.”

Autism on the rise
Although the numbers vary, all sources indicate an increase in the prevalence rate for autism. “Previous reports by some sources estimated the rate as four to five per 10,000. Other recent reports place it at 10 to 12 per 1,000. However, the National Institutes of Health shows it at 1 in 500 children,” says Penton.

There has also been an increasing rate of children diagnosed with autism throughout California and the Bay Area.

“Some people are saying that autism isn’t on the rise, it’s just that more children are being diagnosed, but the numbers have gone up so drastically, it doesn’t make sense that it’s only more children being diagnosed,” explains Penton.

With so many cases of autism, Penton believes, “Once a child is diagnosed with autism, the parent’s journey is just beginning.” Her goal is to educate parents of autistic children so they can be aware of available services and effective advocates for their families and children by preparing this training course.

“A Roadmap Through The Land of Autism,” taught by Antoinette Penton, J.D, is a three-Saturday course addressing important issues in autism. The course will be held on successive Saturdays from Feb. 26 – March 12 at the West Valley College Community Education Office. Call (408) 741-2096 to register. For more information, go to the Web site http://rsaffran.tripod.com/wvc.htm  or call Penton at (408) 483-8557.

What causes autism?

Although there is no single agreed-upon cause of autism, various possibilities are being investigated, including a genetic link, environmental factors and the connection to the mumps-measles-rubella vaccine (MMR).

Research conducted by Dr. Andrew Wakefield, formerly of the Royal Free Hospital, in England, demonstrated a link to the vaccine. Some leading figures, including Dr. Bernard Rimland of the Autism Research Institute, himself the parent of an adult autistic son, also believe that MMR plays a role. Others, however, including the vaccine industry, have rejected the connection.

Those who believe in a connection between autism and the MMR vaccine cite the increase in autism rates from the time that the vaccine came into general use. While the prevalence rate for autism has been cited at different levels depending on the source, all show an increase.