❒ Parent of autistic child founded popular online resource

April is Autism Awareness Month, and a Benicia resident who has been providing products and tools for those affected by the various levels of the syndrome since 2008 wants her community, Benicia, to know all about it.

Bonnie Arnwine founded National Autism Resources that year for a personal reason: She’s the mother of an autistic child.

Rejecting those who advocated putting her son into an institution, Arnwine instead used her skills as a researcher to learn about intervention therapies that might help her child.

She then published an award-winning book based on her research so other parents could work with their children at home. And she has become a frequent speaker at autism conferences throughout the country.

Beginning as a home-based business, National Autism Resources has grown and now operates from Benicia Industrial Park. It is a prominent distributor of products and tools that help those living with autism both in the United States and Canada.

“We are a company that offers over 1,200 products that support the needs of people with autism across their life span,” Arnwine said.

“We are not about supporting one type of therapy; we are about supporting each individual and findings tools to support their individual developmental needs.”

Autism, sometimes called autism spectrum disorder or ASD, is described as a group of brain development disorders that can range from mild difficulties in handling social interaction to affecting both verbal and nonverbal communication and causing repetitive behaviors.

While some diagnosed as autistic can have physical and intellectual disabilities, others may excel in art, mathematics or other skills.

She said the Centers for Disease Control and Prevention has plenty of information about the disorder on its website, including what parents should watch for if they suspect their children might be affected.

The CDC listed what it calls “red flag” signs, such as if a child doesn’t respond to his or her name by the time the baby is a year old; doesn’t point at an object to show interest; doesn’t play pretend games such as pretending to feed a doll by 18 months; avoids eye contact and wants to be alone; has trouble understanding other people’s feelings or talking about their own feelings; has delayed speech or language skills; repeats words and phrases over and over; responds to questions with unrelated topics; becomes upset with minor changes; has obsessive interests; repeatedly rocks his or her body, spins in circles or flaps his or her hands; or reacts unusually to smells, sounds, textures or sights.

No specific cause of autism has been proven, including the suggestion from some convinced parents that some vaccinations may trigger it. That’s a tie that has not been established, and has become controversial with those who are worried that it exposes children to serious but preventable diseases.

Arnwine said she stays out of the vaccination debate.

“I will say this, if a parent is concerned about vaccines, another option is to look at an alternative vaccination schedule,” she said.

“We live in the Bay Area. There are a lot of people who travel in and out of our community and exposure (to disease) is something to consider.”

She recommends a family discuss the matter with its health provider, and if the parents don’t believe that doctor takes their concerns seriously, “find another one.”

However, she does agree with the contention that there is no single cause of autism.

“Several genes and gene mutations have been identified that are linked to or can cause autism in small subsets of people,” Arnwine said. “However, in most cases it is probably a combination of genes and environmental factors.”

More boys are diagnosed with autism than girls, with some researchers saying one in 42 boys may fall into some level of the spectrum, compared to one in 189 girls.

But the rate of diagnosed autism appears to be on the rise, Arnwine said.

Recently, the number was pegged at one out of an overall 88, but other statistics indicate the syndrome is even more common, found in one in every 68 children.

“The definition of autism, or diagnostic criteria, has changed to a concept of an autism spectrum,” she said. “There is also a rising awareness among parents and professionals about the signs of autism. This could account for the rise.”

She noted that physicians are reporting increases in other childhood diseases as well, such as asthma and pediatric diabetes.

“I do believe that there is something else in the environment that is also contributing to the rise in the autism diagnosis; we just don’t know what it is yet,” she said.

“Autism is very complex,” Arnwine added. “People with autism have difficulties in social interaction, communication and often have problem behaviors.

“This can range from a child who is nonverbal and is self-injurious — hurts himself — to a child who is highly verbal but has such poor social skills they are unable to connect with peers or understand nonverbal language (or) body language.”

She said the lack of those social skills can lead to a child being victimized. As adults, they may be unable to interview well enough to get a job or keep one if the job requires managing “complex social requirements that most of us never think about,” Arnwine said.

The parents of an autistic child have their own types of stresses, she said.

“Parents are usually juggling several therapies at once, and dealing with challenging behaviors,” she said. In addition, each child’s situation is different.

Arnwine said she often hears families say they have felt judged.

“For example, friends and family members may comment that the parent just isn’t disciplining their child,” she said.

Others may question the family’s therapy choices or quit inviting the family to visit because the parents are perceived as being unable to handle their child.

“The list goes on,” she said.

She said many of these parents suffer their own emotional despair, especially if their children are severely disabled.

“Some studies have suggested that 60 percent of parents raising a child with autism would be considered clinically depressed,” she said.

“The biggest challenge for most parents is taking care of themselves. There is so much that goes into supporting someone with autism that frequently parents have nothing left for themselves.

“They often become isolated from friends and family at a time when they really need those connections and support.”

Fortunately, the public is becoming more aware of the complex syndrome, she said, explaining that “15 years ago, no one had heard of autism unless they had seen the movie ‘Rain Man.’”

That movie, released in 1988, directed by Barry Levinson and starring Tom Cruise and Dustin Hoffman, tells the story of two brothers. One, Hoffman’s character, is an institutionalized autistic savant who inherits a multimillion-dollar estate, to the surprise of Cruise’s character, a car dealership owner who had never been told of his brother’s existence.

“The prevalence of autism has moved from 1 in 10,000 in the 1970s to new CDC estimates of one in 68 children,” Arnwine noted.

“Almost everyone I talk to knows someone with a personal connection to autism.”

Some parents of autistic children in Benicia have complained about how they’re treated in public, such as in restaurants, when they are accompanied by their children. On the other hand, some have worried about the effect an autistic child’s behavior can have on other patrons. What’s the balance?

“People with autism need to be taught specific skills in order to learn them,” Arnwine said. “For example, they must practice over and over several times how to place an order at a restaurant, how to make a purchase in a store. These are complex social behavioral interactions that most of us pick up by watching those around us.”

She said those with autism can’t learn how to interact in the community and take care of their basic needs unless they are taught.

On the other hand, she said, “Understanding, compassion and support from our community is vital here.

“I don’t think any parent of a child with autism thinks, ‘I’m going out to dinner. If Johnny has a meltdown, everyone better deal with it.’

“Often parents find themselves out in the community and something beyond their control happens, some sort of a trigger, that can cause their child to react in an unconventional manner.”

Parents can’t prepare for every little thing that can arise, she said. “They just have to face them as they come.”

She said sometimes autistic children may flap their hands, stand up and sit down, hum or sing for no apparent reason.

“I have heard people complain about this in public situations,” Arnwine said. “The annoyance of some by this behavior should not be a reason to restrict one’s access to the community. Everyone should have the right to unrestricted access to public places.”

She said other people should assume the parents are doing the best they can with the child.

“I would encourage people to take a breath and don’t be quick to judge,” she said.

Arnwine said there are positive developments for families with an autistic member.

“There is lots of hope,” she said. “What we know today is vastly more than we did a decade ago. Lots of good research has come out showing people on the autism spectrum can make significant improvement with intensive treatment.”

She said research shows that with proper support, adults with autism can support themselves with a variety of real jobs, “not just stuffing envelopes.”

They can live either semi-independently or completely on their own, too, she said.

“Every year we learn more. I am seeing more awareness. I have a lot of hope that we will continue to find creative ways to help young adults on the spectrum live fulfilling, independent lives.”

As parents continue helping their children, she said, they should study various therapy options and keep educating themselves and others about the syndrome.

“Ask lots of questions; talk to other parents,” Arnwine said. “You are going to need a team. Work with your school, work with your insurance company, reach out to nonprofits like Easter Seals for support and services.”

Parents shouldn’t fear to ask for a second opinion, either, she said.

Her own organization can help, too, she added.

“Check us out or give us a call. We have a variety of tools that support language, social skills, anger management and so much more,” she said.

The website is www.nationalautismresources.com, and the group can be called at 877-249-2393.

Arnwine said she also approves of The Organization for Autism Research and Dr. Peter Gerhardt’s work, as well as that of others who focus on autistic adults.

“I recently heard how Dr. Gerhardt was able to teach a young, nonverbal autistic man how to ride the train independently to and from work,” she said. “It’s important not to limit the possibilities of what anyone can do by classifying them as low or high functioning.”

She said those encountering autistic people should “be flexible, be supportive, try not to judge and be open to looking at the world in a different way.”

Those willing to make small accommodations for those with the syndrome can mean the difference in someone having independence and a life that is set apart from the rest of the world.

“Autism is a journey,” Arnwine said. “There is no quick fix. But kids can learn and grow, with proper intervention.”