Living and learning with autism

She knew her little boy wasn't meeting his developmental milestones. He wasn't speaking or responding when spoken to. His social interaction skills were poor.

But Cameron had been very sick during his first two years of life, and Toth blamed the illness for his delays. After tests ruled out hearing loss, her husband, Glenn, suspected something else was wrong.

One month after this third birthday, Cameron was diagnosed with autism.

The announcement was hard to accept. The couple's 7-year-old, Adam, had met all his milestones on time. Toth had two healthy pregnancies. She knew no one who had autism.

"So it was very hard not to be in denial," said Toth, a registered nurse. "Everyone wants their child to be perfectly healthy and have nothing wrong. When he was diagnosed ... I thought it was the end of the world. I thought I was going to have a child who couldn't talk or understand that I love him."

The Autism Society of America reports that one in 150 children has autism, a developmental disability that affects social skills, language and behavior. Four out of five autistic children are boys.

Their symptoms vary widely along a "spectrum" of impairment ranging from mild to severe. People with severe autism may be unable to communicate or interact with others. Those with the mildest impairments may lead normal or near-normal lives.

In any case, the key to helping a child with autism is early intervention, Toth said. Cameron, now 4, has made enormous progress in social interaction and speaking since his diagnosis.

The family sought help from Northwestern Human Services, a nonprofit organization that provides in- and out-of-home services to autistic children throughout Pennsylvania.

"(Cameron) has come a long way with his vocabulary," said Toth, of Greensburg. "He probably says about 80 words now. He may need prompting at times, but he does really well.

"That's what is so strange -- that language barrier," she added. "It is so hard for them to overcome."

Cameron knows his numbers, letters, colors and shapes, and he is starting to write his name, his mother said. But "expressive communication" continues to present a challenge, as it does for many autistic children.

Family Behavioral Resources, which serves much of Western Pennsylvania, provides support services to children and their families from its corporate headquarters in Greensburg and a number of community offices.

In addition to initial diagnoses by licensed psychologists affiliated with the group, FBR offers therapy, help with obtaining medical assistance, and support groups for the whole family.

Children receiving services from FBR are as young as 18 months. Rick J. Murray, corporate director of autism services, said each child with the disorder should receive an individualized treatment plan.

"There is no textbook way to treat a child with autism, so for each child, the application is different," he explained.

Children may receive treatment -- speech and language therapy, occupational therapy, behavioral training, school support and more -- at home or in another setting.

Toth said Cameron, who is moderately impaired, falls somewhere in the middle of the autism spectrum. He works with an aide at home for three to six hours a day, five days a week. He also attends preschool with the aide, learning alongside typical children his age.

He's done remarkably well, Toth said. With the help of his family and therapists, Cameron is learning to handle the frustrations that arise from his language delays.

"He does show some aggression toward the staff," his mother said. "It's more out of frustration, because he doesn't have the communication skills to tell you what he needs or wants. He will hit or pull hair, which is a typical reaction.

"Transitions are also very difficult for him," Toth added. "He is getting much better, but if he's not finished doing a task, and it's time to move to something else, it's not like he can say, 'Can I have one more minute?' So he gets frustrated, and we are working with him."

Perhaps the biggest improvement, Toth said, has been in Cameron's ability to join the family on public outings.

"At first I had a hard time taking him anywhere. We were lucky if he would sit for two minutes in a restaurant," she said. "Now we take him to a restaurant weekly. He will now sit and wait the whole time for his meal.

"Before, I was mortified and embarrassed at how he acted. Now I don't think twice about it," Toth added. "I take him to the park, to Wal-Mart.

"I was never going to let autism take over my life. We weren't going to shelter him. We work through it. It helps him in the end."

Taking care of an autistic child is exhausting and stressful, experts say, and a support group can be invaluable for parents and other family members.

"It's a full-time job taking care of a child with autism. Parents often feel isolated. They feel like no one understands what they are going through," said Catherine Hughes, family support coordinator for FBR and mother of Christian, a 9-year-old who has autism.

"It is vital to connect these parents together and let them know that we do care and that there is hope for their children."

Although Toth doesn't attend a support group, she relies on family and friends to give her a rest not only from constant child care, but from a hectic schedule that includes Cameron's speech therapy, occupational therapy, swim classes and more.

"It's important to get support and to get that break. It can be very overwhelming," Toth said. "I feel that I am constantly prompting him, constantly facilitating communication. (Cameron) cannot be left unattended from the time he wakes up until he goes to sleep. He has no concept of danger, so he doesn't have an awareness that he can't touch certain things."

FBR has structured its family support groups to coincide, so the whole family can attend at once. While parents meet, for example, siblings can get together and autistic children can attend a structured play group.

"That way parents don't have to schedule child care, and the children get something therapeutic out of it," Hughes said.

Melissa Penman, regional director of autism for FBR's New Kensington and Kittanning offices, oversees a sibling support group.

"We offer activities for the preteens and teens, and for the younger kids, that collaborate with what the adults are doing in their group," she said. "We try to come up with games that help deal with the emotions and feelings. It's important to the siblings, because oftentimes they might not get as much attention as the child in the home with special needs."

Toth said her older son, Adam, has taken on the role of his little brother's protector. She said it's important that she and her husband spend one-on-one time with Adam to give him the attention he needs.

In the meantime, Cameron continues on the path toward a bright future. He will attend a new preschool this fall, where he will receive speech therapy and other services to help him move into a typical school setting.

"I worry about the future, because I want him to be as independent as possible. I want him to lead a normal life. I want him to be able to care for himself and enjoy life as a typical child would," Toth said.

"I want him to be the best that he can be. Whatever that may be, we'll be proud of him."

• Most Read
• Most E-mailed
• Latest News