In Search of the Autism Answer

Autism in America: How proper diagnosis eludes many families.

October 30, 2008, 5:27 PM

Nov. 3, 2008 -- Growing up in Yonkers N.Y., Jason Ross was always diagnosed with something.

The diagnoses began with speech delay, followed by attention deficit disorder. Next was "psychosis not otherwise specified." Obsessive compulsive disorder also joined the ranks.

Finally, at age 25, Ross was diagnosed with high-functioning Asperger syndrome.

In the years before his diagnosis, Lois Ross, Jason's mother, says his condition confounded every medical expert they saw.

"We were told for a brief time he was schizophrenic," she says. "You'd say, 'Do you hear voices?' and he'd say, 'Yes' ... It took three or four years until he got that the question was, 'Is it in your mind, or is it other people on the street?'"

Without the proper diagnosis, doctors originally predicted that he would never be able to finish a real high school curriculum. Despite this, however, he eventually graduated and attained a bachelor's degree. Ross, now 29, works as a cardiovascular technician.

Living in a time when attention deficit disorder was in the popular media and autism was rarely heard of, Lois became a dogged activist in helping her son, whatever he had. She even became a social worker to help developmentally disabled people.

It was a few years ago, when Lois started working with people on the autism spectrum, that it hit her.

"I started working with a 13-year-old boy who was diagnosed with Asperger's and I kept coming home and telling my husband, 'I'm working with Jason!'"

The similarities between her son's behavior and the teenager's -- the social naïveté and a lack of interpersonal skills, laughing at the wrong time -- made her seek an expert in New York City.

Suddenly, after the diagnosis, Jason's echolalia, his obsession with a single subject, his aversion to other people's touch -- everything that didn't fit before fit with the autism diagnosis and made sense.

Hear Jason Ross tell his story.

As devastating as an autism diagnosis can be, for many families it is an important first step in dealing with a child's condition. And often it comes as a complete surprise.

In Barbara Ahrens' case, she wasn't expecting to come across a life-changing revelation when she took a trip with her toddler to the local children's entertainment franchise Discovery Zone.

"There weren't any other children around for me to compare him to," says Ahrens, a new mom whose only other relations to children were nieces and nephews who were much older than her own child.

But when she watched 1-year-old Matthew play side-by-side with other toddlers that day in 1998, Ahrens noticed a difference.

"His mannerisms ... it just wasn't the way the other children acted," says Ahrens.

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Matthew didn't talk, smile, or laugh as much as other children. Nor did he seem to care whether anyone played with him. "I told myself: I can't compare him with other kids because everybody's different, but it just didn't fit," she says.

That subtle difference only grew more apparent as Matthew aged, leaving Ahrens at a loss for what to do, where to go, and when to worry. It took four more years -- during a crucial developmental time for a child with autism -- before Ahrens found expert help to diagnose him.

With autism's subtle early signs and no physical test to confirm autism, Matthew's incorrect diagnosis in kindergarten is the norm for most families.

Early signs of autism can be easily confused for a shy personality, speech difficulties, bad parenting or obsessive compulsive tendencies. Childhood development experts say the list of red herrings goes on.

Consider the number of problems that can mimic autism symptoms -- Rhett Syndrome, fragile X, hearing difficulties or more -- and experts say the diagnosis quickly becomes very complicated for the average family doctor.

When children do see a specialist, the diagnosis can take hours and the waiting lists can be months long.

Autism specialists need detailed family histories and timelines of developmental milestones such as the age of the first word, or first steps.

When a young child comes to her office, Lynda Geller, clinical director of the Asperger's Institute at the New York University Child Study Center in New York, pays careful attention to the way a child plays. At the crux of the autism diagnosis lies in interviews and playtime.

If a toddler spins the wheel of the truck hundreds of times, but never pretends the truck is driving, it can be a warning sign, said Geller.

A failure to understand certain universal gestures is another red flag -- for example, said Geller, a toddler who doesn't understand pointing. At 15 months of age, it's natural to follow the direction of the finger instead of staring at the hand.

Geller says first-time parents like Ahrens can miss these subtle differences.

"Often it depends if it's their only child, because they're not aware that it's different," says Geller. "It's not something we necessarily teach in high school."

Autism Speaks has developed a unique video library ( that helps demonstrate the subtle differences between autistic and non-autistic children's play. Geller uses some of the same techniques in the videos, such as blowing bubbles to check for what's called joint attention, or the tendency to draw others into your experience with looks and gestures.

"I might blow bubbles with the child," says Geller. "What I want to see if the child is looking over at their mom and dad as a sharing of their enjoyment."

Joint attention is crucial to learning language, and a language deficit is a signature of autism. Early signs that a child is autistic, such as a lack of joint attention, will differ from the common delayed speech red herring diagnoses many children receive.

In fact, when Ahrens first took Matthew to the pediatrician, all she heard was that he might have a speech delay.

"Autism was never on my mind -- never thought of it, people never said anything, nothing," says Ahrens.

Her pediatrician advised her to wait to see if Matthew learned more than 10 words. He told her to come back when he was two, then asked her back again when he was two and a half.

"The reason people should go to a specialist in autism is because people who are familiar with autism can diagnose it early," says Geller. "A pediatrician might say, 'He'll outgrow it maybe in six months.' Someone who's an expert in autism would not say that -- and those six months are critical."

Before his third birthday, Ahrens got Matthew in to the Early Childhood Intervention Services, a federally funded program to help teach children who have cognitive, motor or communication delays.

Indeed, the Early Childhood Intervention (ECI) teachers went straight to helping Matthew with his speech problems, but autism experts warn that speech therapy isn't the same as an autism diagnosis and autism treatment.

"Early intervention is not a diagnostic system; they will say this themselves," says Geller. "They want to just treat what's the delay and see if the child will respond."

Although Matthew received some analysis, Ahrens says he never fit into the autism spectrum until he got into kindergarten. His younger sister, Elizabeth or "Lizzie" also wasn't diagnosed until kindergarten.

"In the back of my mind, I knew there was more to this [than a speech disorder]," says Ahrens. "I thought, 'Well, fine, maybe once his speech picks up, maybe his everything else will pick up.'"

Unfortunately, autism experts disagree.

"If I just put them in speech therapy and get them to say 'pah,' it's not going to help them," says Dr. Max Wiznitzer, from the Rainbow Babies and Children's Hospital in Cleveland. "It's not pronunciation; their problem is with the use of language."

A person with autism might have three words, or have the vocabulary of a college professor, but still not understand how to converse with someone instead of "talking at" someone, says Wiznitzer.

Autism experts like Geller and Wiznitzer aim to treat communication first and foremost in autistic children, because communication is key to later development.

Geller says the earlier the treatment, the higher the child may eventually fall on the autism spectrum -- and the closer they will come to enjoying a normal life.

This push on early intervention has created a frantic rush from all sides: parents, schools, and physicians.

"We have to juggle and triage our wait list," says Dr. Patricia Davis, developmental pediatrician at the LADDERS program at Massachusetts General Hospital for Children in Boston.

The LADDERS program diagnoses 700 to 800 children a year, and for every three kids diagnosed, one was found not to have autism.

"Younger kids get in within a month or two," says Davis.

However for those who are seeking a second opinion, or who already have access to treatment, they may wait up to six months.

This situation stands as evidence that specialists in autism have not met the increasing demand. One problem is that there are simply more diagnoses nowadays. While for decades the U.S. Centers for Disease Control pinned the incidence of autism at four children in 10,000, now the CDC reports a rate of 1 in 150. Whether that increase came from an expansion in the criteria used to diagnose autism or if it instead represents a true increase has yet to be answered.

But whatever the source of the increase, autism experts also face pressure from the school systems.

"I've had parents come to us and say the schools say, 'We can't do anything for you unless you have the label,'" says Wiznitzer. "Either the schools are misinformed about the law, or they realize that it's a money maker."

In Ohio, Wiznitzer says a child with autism receives four times the amount of funding in school than a child without disabilities, and the autism diagnosis trumps any other developmental disorder.

"As a consequence of that, we have to be really, really careful," he says. "There's too many people out here applying the label with incomplete data or incomplete knowledge."

But, Wiznitzer adds for parents: "The real question is what are you going to do with the label? Where is it going to get it you?"

For a family like the Ahrenses, a diagnosis helped her family get the treatment they needed in school. But even without the early intervention, a diagnosis can mean worlds to families and individuals.

"If you can get a label on something, then you can put some closure on the emotional involvement," says Wiznitzer.

As for Jason Ross, he now participates in an Asperger's support group called GRASP. And Lois Ross says the fact that he finally received an accurate diagnosis has made all the difference in his life -- as well as her own.

"I think it would have made a big difference just knowing," she says, "but I did everything and anything I could to make sure Jason had every opportunity.

Read/Watch the Entire Series: Autism in America

"I really feel that it's up to the parents -- I have to make his life a productive life, and that's the goal. That's the way I look at it."