Parents of Children with Autism Work to Draw Awareness, Understanding

Audience members closely watched the video of the young girl on the screen. She cried, acted out, banged her head against the floor. She couldn’t speak verbally or look her family members in the eye. Young Carly is a child with autism.

While many people may have heard of autism and think they know what it is, the reality is that most people don’t understand it.

This very reason is why Wayne Bardowell and Pat Bagley have both become involved with spreading autism awareness. The two addressed a roomful of people interested in learning more about autism spectrum disorders- a group of developmental disorders caused by a problem with the brain  - at the Thursday night which was presented by the Kiwanis Club.

Bardowell has an eight year old son with autism and for the past five years he has been educating people. “I decided that autism awareness is the best way I can help him,” he said.  Bagley has an 11-year-old grandson who has autism.  She acknowledged that it can be hard, frustrating for parents and families but it is even more so for the child.

Autism now affects 1 in 110 children and it has grown 600 percent over the past 20 years, audience members learned from the AutismSpeaks.org public service announcement which Bardowell screened.

There really is no determination of the cause of autism yet. Bardowell said autism is definitely a type of brain damage. The understanding is that these children have genes that are actually turned off. The hope is that maybe one day they can find a way to turn these genes back on.

There may be things that trigger it, something that perhaps pushes it over the edge, Bardowell said. One of the things may be vaccinations. In his son’s case they suspect this could have been possible. He remembers his son being a typical baby and around the age of 18-months old, shortly after being vaccinated “I saw my son disappear,” he said. At the same time many children with autism are diagnosed around the age of 18 months.

“We have to find the cause so we can find a cure. That’s our goal and that is why we do what we do,” said Bagley.

Bagley called the organization Autism Speaks “amazing” with the work they do to help children and people with autism. She told audience members that they now have a kit called “aging out” for those who turn 21 as there really is nothing out for them for housing or employment.

Parents in the audience spoke out in agreement that most people really do not understand autism. One man said he has actually had someone tell him and his wife to throw cold water on their daughter when she acted out in public.

“These children do not hear what you hear. There is so much going on their heads and they can’t process it. That is when they meltdown. It calms them and people have to understand that,” said Bagley.

Carly, the aforementioned young girl in the video was featured in a segment of ABC’s ”Nightline” which showed the young teen and her family dealing with the affects of her autism. As Bardowell pointed out everyone had pretty much written this young girl off but then one day she found her voice and began communicating one letter at a time on a computer.

The powerful video showed that by working consistently with these kids improvements really can come about. Young Carly is now writing a book. She is very intelligent but she can’t communicate the way a typical teenager can.

Carly says that when she looks at someone’s face her brain takes 1,000 photographs. The brains of children with autism over process information. She bangs her head against the floor or the wall because it is the only way she can calm herself down, she typed.

As Bagley pointed out each child's needs are unique which is why therapy such as Applied Behavioral Analysis (ABA) has different affects on different children.

Bardowell screened more footage from “Nightline” that showed two different boys who both had ABA therapy. One youngster improved so much he is no longer considered on the autistic spectrum. The other boy also made substantial progress but at a different rate and may never be off the autistic spectrum.

“There is no one treatment that works for every child,” Bardowell said adding that things like diet changes such as gluten-free can help one child but not another. Bagley said treatments can consist of speech, occupational, diet, medicine, physical therapy but they are all different for each child.

She said if she brought 10 children with autism into a movie theater they would be dealing with 10 different reactions. One child may begin to run around the room, another may cover his ears, another may not look at the screen. This difference in their behavior is also what makes finding the proper education for these children so challenging.

There are schools but there are waiting lists and high tuition costs which is challenging for most families. Some schools for children with autism in the area can have a tuition of $70,000 a year, Bardowell said. As for public schools, they must offer all children an education, however many districts don’t have the special education programs in place and therefore need to send the children out of the district. Some parents said they have felt some resistance from school districts in regards to educating their children.

Bagley helped fight in Washington to get a law passed that requires insurance companies to help pay for ABA therapy. Insurance companies are now required to pay up to $50,000 a year for this therapy.

“There is hope. That is what we live for,” Bagley said.

There will be an Autism Speaks Walk Now for Autism on Sunday, May 22 at Bergen Community College.