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New Jersey
By Richard | January 27, 2008
Mothers tell stories of raising their autistic children
Bruce A. Scruton | New Jersey Herald
The two mothers agree on some things: The initial shock at hearing the word “autism”, the deep desire to fight back and the experts’ opinions that “it’s great that you live in New Jersey.”
Within the autism community, New Jersey, which has some of the highest numbers of children diagnosed with some form of autism, also has the reputation of having some of the best programs available for treatment.
“I remember the doctors (at Yale in Connecticut) saying they had good news and bad news,” said Virginia, the mother of two autistic children. “And they phrased it that way, too. The good news was we lived in New Jersey.”
The other mother, Holly Rausch, and her family were living in Connecticut and also got the diagnosis at Yale. “When we told them (a couple of years later) we were moving to New Jersey, the doctors said ‘Great. They have wonderful programs there.’ And in talking to other parents from other states, it seems like they are living in states in the dark ages. There’s just a big lack of services elsewhere.”
According to statistics from the New Jersey Department of Education, the number of young people between 6 and 21 in the state who are diagnosed with autism grew to 8,806 in 2007, an increase of more than 5,000 in the past seven years. Sussex County recorded 140 students with an autism diagnosis in 2007, twice the number from five years earlier.
Those numbers don’t include toddlers who are getting early diagnoses and are now getting early intervention in pre-kindergarten programs provided by school districts.
Autism and related disorders such as Asperger’s Disorder, is displayed by atypical or repetitive behavior. Most often those with autism are lacking in language or social skills. About five times as many boys as girls suffer from autism, and the disorder crosses racial, ethnic and social boundaries.
Children with autism often play with one toy to exclusion of others and seem to ignore the world around them.
New Jersey has been an acknowledged leader in providing services to those with autism and their families, ranging from state aid to school districts to several private agencies and advocate groups, such as the New Jersey Center for Outreach and Services for the Autism Community.
There are also several well-known schools, such as Celebrate the Children in Byram, which specialize in autism.
In addition to services for children, the state has also pledged funds to help adults with autism and is even moving to provide awareness training for public service employees, such as police, firefighters and EMTs.
The children of Holly and Virginia were all diagnosed before the age of 6, when their parents noticed problems with their speech, or their lack of speech.
Once the diagnosis was made, the parents went on a search that, over the years, led them on different paths to the same destination — help for their child.
Virginia’s search convinced her that diet is a main component to successful treatment. “They have made a large amount of progress,” she said of her children over the past eight years as she has eliminated dairy and grains from their diet. She also believes that environmental issues are a major contributor.
“Autism is treatable,” she said.
After years working with other parents and other doctors, and while there are no studies which provide definite numbers “there is much strong anecdotal evidence” that diet is important.
Holly also said she looked at diet, but she tried many other programs.
“If it wasn’t going to hurt him, we tried it,” she said. “There are so many schools of thought, and everybody is so passionate about their own theory.”
From all the programs, however, she said there has been remarkable progress with her son, Matthew. “I don’t really know what’s in the big cocktail (of treatments), what it’s really made of. I just know it’s working.”
With autism, many problems involve social skills. A child who gets a scolding once or twice usually learns that particular behavior is bad. A child with autism may need dozens of reminders, yet will still continue the behavior.
An individualized program is what educators strive for, said Wendy VanderVliet, of the Byram School District’s Child Study Team. While the school leans heavily on a particular program, there are bits of other programs brought in to fit the individual.
“When it comes to positive reinforcement, some students respond to verbal (praise). For some it’s more primary — a snack treat or a hug,” she said. “Then there are those who get a ‘Good job,’ and a high five.”
Byram has eight students who have been diagnosed with autism and seven of them are attending school in the district. Some are fully included in the general population and, other than being accompanied by an aide, get no special classes.
Progress, she noted, is also a very individual thing. “We’re trying for the least restrictive environment,” she noted. “I think they all show an improvement at their own pace.”
Virginia believes genetics play a part in creating a child who is predisposed to developing autism, and there are environmental factors that can trigger the disorder. She also believes in the controversial theory that, in some cases, mandated innoculations play a part in the onset of the disorder.
Virginia asked that she only be identified by her first name because “my goal is my children not carry a label” and told a story which she believes shows that early placement in regular school helps all students:
Her son’s school held a special Autism Day last year and in his fourth-grade class, the teacher asked if anyone knew someone with autism. A boy sitting beside her son, raised his hand: “I don’t know anybody like that.”
“It helps if the child is mainstreamed at the earliest stage,” Virginia said. “It makes for a much smoother transition and the other kids realize they are just who they are. Doing nothing is really causing the child to not get better.”
Holly said the knowledge that early intervention is best hit her hard. “I heard it from everybody, ‘get treatment, get treatment’. It felt like a clock ticking, and I was losing valuable time.”
Last year, she said, she realized Matthew was on the right track when she took him to Yale for a check-up and he was seen by a doctor who last saw him four years earlier.
“He marveled at what Matthew has become,” Holly said. “He told me that while he didn’t say it then, he had labeled my son as one who would never speak. Back then, I also thought autism was the death of a dream I had for my son.
“We’re worlds away from that now. I accept it so much more,” she said. “To me, that child is gone. Matthew’s autism is who he is.”
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