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Understanding Autism isn't easy

Apr 11, 2008 | Katie Hunter | This Week

Linda Richard's son has regressive autism and at times, she has felt in the dark about the neurological disorder. The healing for her family began through a support group provided by peers and asking a lot of questions.

"The first parent group I went to I couldn't identify with other parents," she says. "A lot identified their kids with those having normal skill sets. My son was ahead of these children and talked. When he regressed, he woke up one day and looked like he had a stroke, and we watched everything disappear. He never talked after that."

Linda continued going to the parent support group and found one meeting held her attention. One parent related to her son's case and it stuck. Not only was the inability to communicate taking place between her and her son, but finding a way to discuss and work with the disorder, is an individual struggle parents work through child by child.

"No one knows why most of these children have autism and if they say they do, they are not researching enough," Linda says. "I knew my son had autism before he was diagnosed."

Her advice to parents is to take it upon themselves to learn the most they can about Autism.

"Its only been really looked at in the past 10 to 20 years," claims Linda. The persistent mother has found a few ways to help her child and family get the most they can out of available sources of information.

"By using Applied Behavioral Analysis, you will benefit far more than any other treatments out there," she says. "What I found out about Applied Behavioral Analysis (ABA) is that it will go around your child's needs and take some of the guesswork out. People don't realize when you can't communicate properly, your behavior is your communication."

Linda is a very active woman within her community, and from her voice comes a strong character, deeply concerned about her son's, and other children's, learning. The Autism Centre at Lewisville Middle School was founded in part by Linda and her persistence.

"At the beginning we would get parents together and it would be informal," she explains. "We were not sure where to begin. We asked parents about what they wanted." Linda is a leader within the group and anything but selfish. She takes the advice from the people who have been through these struggles and puts them into practice.

"There are a lot of amazing skill sets and ideas parents bring to the table," she says. "We listen to what's missing, listening to what people want based on their experience. This way it not only benefits my son, but benefits other people."

The centre has a wealth of information for parents, relatives, and pediatricians. They have also sent an enormous amount of materials to District 1 and 2 schools. The resource centre has also developed an educational CD, which has been translated into French and Spanish and used in different parts of the world. The CD has been given freely to autism families within New Brunswick.

"We are quite recognized now by different people in the community," Linda says. "Obviously we are making an impact in ways we don't see. People are coming in wanting to know and see more."

Although the province has a preschool program they fund and training is available through UNB for early childhood education, there still need to be changes to the system. The Liberal Government has training for 100 teacher's assistants but are having trouble keeping them in the classroom. These assistants are necessary to aid children with autism.

"It is extremely important that the children with Autism get the correct training the first time," Linda stresses. "It's seven times harder to teach it properly after it's been done wrong. With ABA we still make mistakes but it's easier to limit them.

For the past two years, her son has had a trained TA and says that his communication skills have taken off.

"For the longest time he has had to compensate for the support and training we lacked," she says. "The picture exchange communication system he had he was not using functionally in the school system until the trained assistant came in. He still has a lot of catching up to do. We know at his age now we don't have a lot of time. It takes so long to teach fundamental things to him."

Linda and the centre are establishing progress and hope through their community core.

"I am no different than anyone else," she says. "I think I just got in and I have to do things through action. I've watched people lose their houses to provide for their kids. Everyone is working hard to try and change the system. Waiting for change to take place is hard for everyone. I don't think it ever goes fast enough."