By Marian Wilde , GreatSchools Staff
Autism is a disorder that adversely affects a child's neurological development. It ranges from mild to severe in its impact and is for this reason known as a spectrum disorder.
Children with severe autism are often identified before the age of 2, while children with the milder forms — high-functioning autism and Asperger's syndrome — may not be diagnosed until much later, sometimes not until adulthood.
Autism disturbs a child's normal development of:
Autism often comes with a host of debilitating physical problems, which may include:
Official diagnosis occurs when a psychologist or a physician observes a certain number of criteria, listed in the American Psychiatric Association's Diagnostic and Statistical Manual (DSM). Some of the DSM criteria are:
While no one knows for sure what causes autism, there are many theories.
In the 1940s, when autism was first defined, a few prominent psychologists believed that it was the result of cold and unloving mothers, or "refrigerator mothers," as they were dubbed. This unfortunate theory was accepted by the medical establishment until the 1970s.
Today attention is focused on an emotional debate as to whether autism is primarily genetic in origin or caused by the mercury in childhood vaccinations in the 1990s. Many parents, researchers, and prominent individuals, such as Robert F. Kennedy Jr., have raised concerns that vaccines containing a mercury-based preservative called thimerosal might have caused the surge in autism rates.
In 2004, the Institute of Medicine, a scientific advisory group, concluded that there is no evidence of such a link, but urged that more research be done on autism. That hasn't satisfied critics who say that the scientific studies conducted to date have been inconclusive and inadequate. Generation Rescue, a parent organization that believes there is a link, states on their Web site that "[t]he IOM did not do any primary research, they simply reviewed what already had been done. . .This conclusion was a change from a similar review in 2001 by the IOM that stated the mercury-autism link was 'biologically plausible.'"
The Centers for Disease Control and Prevention (CDC) estimates that an average of 1 in 110 children in the U.S have an ASD. The National Autism Association states that "autism spectrum disorders are 10 times more prevalent than they were just 10 years ago." The Autism Society of America says that "as many as 1.5 million Americans today are believed to have some form of autism. And this number is on the rise. Based on statistics from the U.S. Department of Education and other governmental agencies, autism is growing at a startling rate of 10-17 percent per year."
Unfortunately, there are no easy answers, no virus to blame and no one single cause has been identified.
The CDC states: "While, it is clear that more children than ever before are being classified as having an Autism Spectrum Disorder (ASD), it is unclear how much of this increase is due to changes in how we identify and classify ASDs in people, or whether this is due to a true increase in prevalence."
The National Autism Association counters with "Recent studies show that the rise in autism is real and not due to expanded diagnostic criteria. Because there cannot be a genetic epidemic, many experts believe environmental factors play a role."
For the most part, medical and educational professionals state that there is no cure for autism, although some are now expressing cautious optimism for the future. Priya Sodhi, an autism content specialist for the San Francisco Unified School District, has seen children improve dramatically. "I've seen students that were so severe that their parents were actually considering institutions because they didn't think they could support them, but those students are now in general education. Through early intervention - and a lot of strategies and supports provided by special education teachers - students can move from severe to being in a general education classroom with minimal supports. I think students learn to deal with their autism - that they will always show signs and characteristics of their autism - but it might not be as obvious. I'm hopeful that there will be a cure soon, but I don't see it yet."
Michelle Ficcaglia, program director of Jump Start, an early-intervention parent-training program at UCSF, says, "We do have kids who lose the diagnosis of autism, probably somewhere around five or 10% of the entire population of children with autism at most. We don't really know why some children lose their diagnosis. We certainly do see kids who respond much better to intervention than we thought they would. They might be autistic when they were 3, and at 5 they've lost some of the severity of their symptoms. They move along the spectrum, which I think is more common than full recovery."
Autism was added as special education category in 1991, and by 2003 was the sixth most common special education category, according to the CDC. Between 1994 and 2003 the number of children being served in special education for ASDs rose 600%.
To access free educational resources the first thing a parent needs to do is to get an eligibility evaluation. "That would either be from the school district or the state," says Ficcaglia. "Where they go to get that special evaluation is pretty state specific. The school district doesn't become involved in providing services until the child is 3, but they will evaluate at 2 years and 9 months."
Mary Romaniec, a Massachusetts mother with extensive experience dealing with special education, says "What the schools are supposed to provide varies from state to state and county to county. Quite frankly what you see in California and other states has been parent driven. Totally parent driven. Parents getting themselves educated and, unfortunately, having to go fight for services for their child and hopefully for the next child. And the benefit of having so many children with autism, I hate to say it like this, is that there are a lot of parents getting educated on what their child needs and it has made an impact."
Romaniec urges parents to act immediately if they suspect that their child might be autistic. "My son was diagnosed at 18 months. We had early intervention services at my house within three weeks. The earlier the diagnosis the better. He was head-banging, biting, pinching and screaming. He has none of that now. He's 6 and in first grade. The only thing he has is a little bit of auditory processing delay and that's normal even with typical children."
"There are a number of parents who don't know that special education for all children starts at 3," says Ficcaglia. "The services themselves vary quite a bit. Probably the most common service provided to younger children, children under 5, is Applied Behavior Analysis (ABA). It's a highly individualized one-on-one intervention based on the principals of behavior modification. It's probably the number one set of services available to young children. Then there's a whole set of more play-based interventions and those would include things like Floor Time and now a newer one called Relationship Development Intervention, RDI."
Ficcaglia's program, Jump Start, operates a little differently than most. "We don't believe that one method works for all kids, so we use a very eclectic approach. We use ABA and we use child-centered play-based approaches. We also use speech therapy, which is another common intervention. So we use a more eclectic model, which is available in some places, but generally speaking most interventions are a little bit more unilateral than that, for lack of a better word. They use one method and only one method with the kids."
Be an advocate for your child's education well before kindergarten, counsels Romaniec, and don't automatically accept the district's first IEP offer. "In my son's former school district, they had a Head Start Program, which was 24 kids in a classroom, completely inappropriate for an autistic child, and a Special Day Class which was for children who have more severe symptoms of autism. They offered that to my son, but I said he doesn't belong in either of those places. He needs a small classroom environment where he can emulate normal children. And they weren't able to provide that. So I had to go to a private preschool and have them pay for it and provide a shadow aide. I was advocating for him to learn normal behavior. I didn't necessarily want him to emulate the autistic child."
"There are a variety of behavior therapies that are considered to be accepted and necessary for austic children," continues Romaniec. "It's more than social skills. It's to learn general concepts. My son had to learn the difference between up and down. Forward and backward. Autistic children don't have the same level of cognition of differences of that nature. He had to be taught social cues. He had to be taught normal behavior like sitting in a chair properly. He had to be taught the objects in the house. 'This is a towel. This is a toilet.'"
"Another set of services widely used for older kids is TEACCH," says Ficcaglia. "Those are group-based and they're designed for the classroom. It's a highly visual curriculum that really emphasizes individual work within a group, with a high level of structure in the classroom. The idea behind the visual classroom is that it eliminates the need for as much language for the instruction. So everything is very clearly laid out for children."
Autism is a complex disorder and no one treatment will work for all autistic individuals. Many parents have found that approaching the problem from all angles works best for them. "My like-minded friends and I call it a three-legged stool approach," says Romaniec, "where you need to have dietary intervention, biomedical intervention and behavior intervention. All three. My son's recovery, I attribute it to all three. I cannot pick one over the other. All three were essential."
Biomedical and dietary interventions have not been scientifically proven to be effective.
Biomedical treatments may include:
Dietary treatments include:
J. B. Handley, the founder of Generation Rescue, laments that schools don't address the biological side of autism. "I don't understand the legalities associated with that so I just know it's something they are silent on. It's too bad. I wish they could at least inform parents of this route."
Handley suggests that parents "think of the biomedical approach as an umbrella term for addressing a child's physical symptoms. These kids suffer from gastro-intestinal distress and nutritional deficiencies well in excess of their neurotypical peers, and impaired immune systems and sleep disturbances. There are many different ways to address the many different symptoms."
According to Ficcaglia, "There are private schools and there are private schools. For example, there's a set of schools referred to as nonpublic schools. These are specialized schools designed for children with disabilities and they're funded by the school district. But if a parent opts out of the system completely by going to a private school they would be losing services. That doesn't mean their child can't be provided with things like speech therapy or occupational therapy after school."
"There are very few kids with autism who can make it at a private school," says Ficcaglia. "Their behavioral needs are generally not what private schools are interested in taking. Private schools serve a select group of kids, generally speaking. Eighty percent of children with autism also have some degree of mental retardation or developmental delay."
Romaniec warns parents that "by choosing private over public you sometimes opt to lose services. You need to be aware of that. I hear from more parents that they don't want to deal with school districts anymore and they just want to move ahead paying everything out of pocket. I have cautioned many that you have 12 years of school ahead of you. Now is the time to fight for services that are appropriate for your child. You have to make long-term decisions, because you're going to be broke if you keep paying. Believe me, behavior therapy can cost you $40,000 a year. There are some private facilities that do nothing but treat autistic children. The majority of those are paid for by the school districts when parents properly negotiate on behalf of their child."
There is a growing concern that special education costs are impacting the ability of public schools to provide adequate regular education, as competition for scarce education dollars increases.
An American Institutes for Research study, issued in 2003, indicates that in 1999-2000 it cost $6,556 to educate a regular education student, but $12,639 to educate a special education student. Educating an autistic child, in particular, costs over $18,000, or 290% more than the regular education child.