Robin Allen, mother of 6-year-old Jake felt almost as helpless as her son. "We went several years without a true diagnosis. It was very frustrating. He's really a very smart kid—he's just so trapped in his body."

Jake, who had been misdiagnosed as mildly retarded two years earlier, was finally, and correctly, diagnosed with autism. His school keyed in on it first and it was later confirmed by his physician.

When a child struggles with an unknown villain, parents will do anything to come to the rescue. And the sooner the villain is named, the greater the chance for help.

Katherine A. Loveland, PhD, professor of psychiatry and behavioral sciences at the University of Texas Medical School at Houston, explains that children are diagnosed at different ages, depending on when the family seeks professional help. "It's not uncommon for children to be diagnosed in the second or third year of life. It's still uncommon for a child to be diagnosed in the first year, but once in a while you will see that."

Autism is three to four times more prevalent in boys, and one in about 700 children is estimated to have, what's now called, an autistic spectrum disorder (ASD). Because autism's influences on intelligence, communication, speech and ability to relate to people can vary so greatly, it is almost impossible to create a "typical" profile of an autistic child.

Misconceptions abound about autism. Those of us who have no experience with autism might assume that Dustin Hoffman's character in "Rain Man" represents the typical adult with ASD. Loveland clarifies that his portrayal was a composite of many faces and facets of the disorder. Although the character's anxiety at changes in his routines was realistic, having a special ability, such as music or mathematics, occurs only in about one in 2,000 cases.

People often think of children with autism as incapable of attachment or of expressing love. Loveland says, "I think many families would tell you that their children with autism do love." She further explains that often children with ASD become attached to family members or caregivers they see regularly.

Allen says that her 3-year-old daughter even interprets her brother's communications. Some people with mild or sub-clinical characteristics of ASD have gotten married and held jobs.

Unlike years past, Loveland notes that today, "Even persons who meet criteria for ASD may be able to make a successful adjustment in life, going on to higher education, living independently, having a job, having relationships. Not everyone with an ASD can attain these things, but some can."

The Gold Standard in Diagnosis

The two assessment tools used by trained personnel in interpreting data collected from both parent and child are the Autism Diagnostic Interview and the Autism Diagnostic Observation Schedule. "The reason these are now considered the gold standard is that they match very well with the clinical criteria that we use to diagnose autistic spectrum disorders," Loveland says.

Allen had noticed several signs of autism in Jake, including self-injurious behavior and the spinning of objects. Loveland says that these were only two of several signs that a child might exhibit.

Jake's and his parents' journey toward a correct diagnosis meant countless trips to various specialists, along with several medical procedures during the first four years of Jake's life.

You Can Be a Little Bit Autistic

Loveland points out that there are degrees of autism, and IQ and language skills vary with each child. An example of the diversity of the disorder is the relatively new diagnosis of Asperger's syndrome (see: Asperger's Syndrome).

Barbara L. Kirby, co-author of the OASIS Guide to Asperger's Syndrome (Crowne, 2001) writes, "At this time there is a great deal of debate as to exactly where Asperger's syndrome (AS) fits. It is presently described as an autism spectrum disorder and Uta Frith, in her book Autism and Asperger's Syndrome, described AS individuals as 'having a dash of autism.' Some professionals feel that AS is the same as High Functioning Autism, while others feel that it is better described as a Nonverbal Learning Disability."

Because of the variations, each child requires a unique course of treatment and prescription medications. Its very uniqueness is what makes definitive diagnosis and treatment so challenging.

Finding Help

Most autism therapy is not covered by insurance. While promising private programs exist, they may cost several thousand dollars a month. Loveland points out that some parents are so desperate for a solution that they may be susceptible to boasts of poorly tested programs, losing not only money but also valuable learning time for the child.

A first step in therapy may be applied behavior analysis ( ABA ). The ABA approach breaks down learning into small steps and provides rewards.
"ABA has the child learning new behaviors and controlling interfering behaviors," Loveland explains. "It's often a good way to get a child who has very little in the way of communication skills or social awareness to orient to people, learn some basic skills, and begin to have a means of communicating."

ABA requires a professional, and often parents must take an active role to support this training when the therapist is not around. Although it is a useful tool, it's not a complete solution, she emphasizes.

Allen says that when Jake was officially diagnosed with autism, expanded services were available through public school programs that provided services not offered to mentally retarded children. The most valuable service was "parent in-home training" with a behavior specialist sponsored by the school. This assists the Allens with behavior issues that exist at home.

Not Guilty

When a child is diagnosed with autism, parents may wonder why their child was ensnared with the problem: Was it something that the mother was exposed to during pregnancy? Was the parent responsible in some other way?

Loveland says that although there may be a genetic component to this developmental disorder, the cause is unknown.

Phenylketonuria (PKU), for which most children in the U.S. are now tested at birth, can be linked to autism if the PKU is untreated. PKU is a genetic absence or deficiency of an essential enzyme. However, the effects of PKU may be minimized with diet and medication. Tuberous sclerosis, a disorder involving non-malignant tumors in the brain, also has been linked to the disorder.

What Parents Don't Need

Allen says that family members and strangers don't generally understand autism, resulting in stressful social situations. Outsiders may look at parents as if to say, "Why can't you control your child?" Allen says, "The pain you feel inside is overwhelming at times."

Tension can multiply when the family has other children. Loveland says, "Whenever there's a child in the family who has special needs, he or she is going to require a lot of time, attention and resources, which can be hard for the non-affected sibling."

Allen also sees difficulty in balancing expectations, especially when the older child has the disability. "I tend to accept certain behaviors from Jake that I would not typically accept from his 3-year-old sister. I request a lot of understanding from Katie, which is not fair to her."

Be an Advocate

For Allen, her role doesn't stop at in-home reinforcement of behavior and juggling time for work, her husband and her daughter. She plays an active part in her child's learning programs, knowing which government-supported programs are provided and watching Jake's progress closely.

She requests meetings with the education/life skills team when she sees that the programs outlined by the public education system are not meeting Jake's needs. In some states, parents have even sued to have programs provided for children with autism.

Loveland suggests that parents of autistic children also lobby for better programs and more financial support for research.

"Some of the best minds are working on autism at all levels, from biochemistry and genetics through applied intervention. We are learning more every day, and there are centers like ours across the nation as part of the NIH-funded Collaborative Programs of Excellence in Autism," Loveland says.

UPDATED: 3-11-2004

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