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• 1 in 150 children is diagnosed with autism

• 1 in 94 boys is on the autism spectrum

• 67 children are diagnosed per day

• A new case is diagnosed almost every 20 minutes

• More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined

• Autism is the fastest-growing serious developmental disability in the U.S.

• Autism costs the nation over $90 billion per year, a figure expected to double in the next decade

• Autism receives less than 5% of the research funding of many less prevalent childhood diseases

• Boys are four times more likely than girls to have autism

• There is no medical detection or cure for autism

Research demonstrates that autistic traits are distributed into the non-autistic population; some people have more of them, some have fewer. History suggests that many individuals whom we would today diagnose as autistic - some severely so - contributed profoundly to our art, our math, our science, and our literature. “ -- Morton Gernsbacher, parent of an autistic child.

AUTISM FACTSAUTISM

DIAGNOSIS & TREATMENT

How can you know - and how ealry can you find out - if your child falls anywhere on the broad spectrum?

Parents whoʼve noted that their 14-month old doesnʼt babble or point, is losing skills, or isnʼt talking by 18 months should talk to their pediatrician and get a deveopmental screening. If it indicates a possible problem, you should be referred to a specialist who can evaluate your child further using tools such as the Autism Diagnostic Observation Schedule (ADOS), a workup done by observing and interacting with the child.

That said, getting a qualified medical diagnosis for an infant or a toddler is not the straightforward process it should be. Thereʼs “tremendous variability” in the skill that public agencies and private practices bring to the screening process, says Fred Volkmar, M.D., chairman of the Department of Child Study at Yale University. “Weʼve put a lot of money into research but not enough

into translating that research into medical practice.”

And a sound diagnosis is only the beginning. Treatment is the next step, and there are no fewer than ten types of interventions offered nationwide that work to some degree, says Dr. Volkmar.

But usually only one type is available in any one area. Making a choice (if there is one) between or among approaches not easy on the parent, either, because theyʼre arenʼt clear standards to go by. But using the wrong intervention for a child with ASD can squander a precious window of opportunity. Learning is life long, but many kids who receive intensive intervention early, in their first five years, do better than those who receive it later.” Establishing treatment standards so parents can choose effective programs is the mission of the newly organized NAC (National Autism Center).

4 Family Living

concerns. While the disorder has always been said to represent a “spectrum,” or range, of problems, today more children than in the past whose symptoms show both moreand less- severity are included. For instance,kids with Asperger syndrome, which refers to high intelligence without language deficits but with social impairments, are placed on the spectrum, as are those whose symptoms are so severe that a generation ago they would have been termed mentally retarded.

No one disputes that the number of children diagnosed with an autistic spectrum disorder (ASD) has gone way up compared with statistics from 30 years ago.But as widespread as ASD appears to be- affecting as many as 1 in every 150 children, according to the Centers for Disease Control and Prevention - experts agree that it cannot be called an “epidemic.

The fact is, itʼs impossible to compare how common autism is today with 10 or 20 years ago. Not only are doctors better at spotting ASD, so the diagnosis is more frequent, but many experts say that doctorsʼ interpretation of the spectrum has become so inclusive that a diagnosis of autism is no diagnosis at all. “The use of the term has expanded to the point where children referred to me as autistic lack the social deficit, which is the core symptom,” says Susan Swedo, M.D., a pediatrician and the

principal investigator in the National Institute of Mental Healthʼs Intramural Research Program on autism. “Weʼre muddying the waters.” Not everyone concurs, “In many areas of the country, there is still a problem with under-diagnosis,” says Nancy Minshew, M.D. a professor of psychiatry and neurology at the University of Pittsburghʼs School of Medicine. There is also growing concern that minority children are diagnosedat a rate far below that of Caucasian kids, and at later ages.

Experts do agree, however, that there is no one thing called autism, but that there are autisms - the broad categories of “regressive” and “non-regressive” types, as well as subtypes within these categories. To help clear up the controversy, the National Institute of Mental Health launched a vast study last September to identify variants and refine the way doctors make diagnoses. So as prevalent as autism is.

Autism was first described and named in 1943 and was said to comprise three common characteristics:

• Autistic children prefer to relate to objects over people

• Theyʼre obsessed with maintaining routines and sameness in their lives

• They tend to seek complete aloneness, shutting out the world around them. DIAGNOSIS & TREATMENT

How can you know - and how ealry can you find out - if your child falls anywhere on the broad spectrum?

Parents whoʼve noted that their 14-month old doesnʼt babble or point, is losing skills, or isnʼt talking by 18 months should talk to their pediatrician and get a deveopmental screening. If it indicates a possible problem, you should be referred to a specialist who can evaluate your child further using tools such as the Autism Diagnostic Observation Schedule (ADOS), a workup done by observing and interacting with the child.

That said, getting a qualified medical diagnosis for an infant or a toddler is not the straightforward process it should be. Thereʼs “tremendous variability” in the skill that public agencies and private practices bring to the screening process, says Fred Volkmar, M.D., chairman of the Department of Child Study at Yale University. “Weʼve put a lot of money into research but not enough into translating that research into medical practice.”

And a sound diagnosis is only the beginning. Treatment is the next step, and there are no fewer than ten types of interventions offered nationwide that work to some degree, says Dr. Volkmar.

But usually only one type is available in any one area. Making a choice (if there is one) between or among approaches not easy on the parent, either, because theyʼre arenʼt clear standards to

go by. But using the wrong intervention for a child with ASD can squander a precious window of opportunity. Learning is life long, but many kids who receive intensive intervention early, in their first five years, do better than those who receive it later.” Establishing treatment standards so parents can choose effective programs is the mission of the newly organized NAC (National Autism Center).

3 HINTS TO AUTISM

Millions of dollars have been spent to determine what autism is, what causes it, and how we might prevent or cure it. And thatʼs all to the good. Weʼre on the brink of learning which genes predispose a child to autism and what might trigger its onset. While a cure is not yet in sight, evʼve begun to figure out what works for some children, in terms of intervention between the ages of 12 months and 5 years. “I do think, on balance, kids are doing better,” says Dr. Volkmar. “Twenty-five years ago, when I did my first follow-up on adults Iʼd diagnosed as kids - kids who never had any intervention - only about two percent could live along, hold a job. But since we started mandating education and services, weʼre seeing more independent kids. Iʼd say that two percent has become more like twenty.” In other words, weʼre doing ten times better than we were doing a generation ago Thatʼs the “growing number” we s h o u l d b e a w a r e o f . A n d thatʼs the evidence we should start seeing.

THE GOOD NEW

AUTISFamily Living 3

Research demonstrates that autistic traits are distributed into the non-autistic population; some people have more of them, some have fewer. History suggests that many indi-viduals whom we would today diagnose as autistic - some severely so - contributed profoundly to our art, our math, our science, and our literature. “

-- Morton Gernsbacher, parent of an autistic child.

WHAT IS AUTISM?

Atism seems to be everywhere these days

- in newspapers, on TV, even on bumper

stickers. The rate is skyrocketing,reports

say. We all seem to know of at least one

child “on the spectrum.”

And since the latest

buzz suggests that early

intervention is crucial for

successful treatment, parents

of ever younger children are

searching for signs. Would

your pediatrician recognize

them? Would you? The hype

is worrisome, but the truth

behind it should ease some

-BRIAN DINOT

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