Diagnosis. What Is Autism Anyway?

Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child's Life
by Lynn Kern Koegel, Ph.D., Claire LaZebnik

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Diagnosis: Surviving the Worst News You'll Ever Get

Autism is one of the most alarming diagnoses a parent can hear. Every parent has hopes and dreams for her child, and often these can be shattered when the child gets diagnosed with autism. Most other diagnoses dictate a clear course of action and lead to an undisputed likely outcome, but every child with autism is different and will progress differently. There is no known cause and no known cure. Not only is it a serious disability - it's also a bewildering one.

I love my job. In fact, I am one of the few people in the world who can honestly say that each day I get up, I feel fortunate to be able to do something I love. But delivering the news that a child has autism is the one part of my job that I hate. Fortunately, most people who bring their children to see us already have a diagnosis or at least a suspicion that their child has autism - after all, they are coming to an "autism center." But when I do have to be the one to tell a family that their child has autism, it's painful and difficult. The one consolation I can give the parents is that with good intervention their child is likely to improve, and that although I cannot read the future, many children do improve enormously.

What Is "Autism" Anyway?

To understand what autism is today, a little history is helpful. Relatively speaking, the field of autism is young. In 1943 the term autism was first used by Leo Kanner, who wrote a paper entitled "Autistic Disturbances of Affective Contact." Autistic literally means "alone," and that's what Kanner observed - a tendency in these children to want to be alone. In this paper, published in the Nervous Child (a journal that no longer exists), Dr. Kanner described eleven children between two and eight years old who had similar symptoms, which included difficulties communicating with others, difficulties interacting with others, and unusual interests. Prior to this article, children with these symptoms were usually labeled "schizophrenic."

Although the symptoms of autism have been refined, these three general areas still continue to provide the basis of the symptoms of the spectrum. That is, to be diagnosed with autism, children must have difficulties socially interacting with others; they must have impairments in communication; and they must also show restricted interests. This sounds pretty straightforward, but it's complicated by the fact that although most agree that the disability is neurological, no biological marker has been found. That means that there is no blood or chromosomal test that can tell you if a child has autism. The diagnosis is simply based on observation of the three symptoms, and the expression of these symptom areas can vary considerably. For example, a child who socializes fine with adults but has no interest in children his own age would qualify, as would a child who has absolutely no interest in either adults or other children. A child who echoes everything another person says, a child who can make short sentences but cannot maintain a conversation, and a child who says nothing whatsoever would all qualify under the impaired-communication symptom. And finally, the child who spends all day riding her rocking horse, the child who spends hours each day lining up his mom and dad's shoes in a certain specific order, and the child who only plays with one toy repeatedly would all be a "yes" on the restricted-interests category.

To make things even more confusing, most children express some of these symptoms, so it's not even a simple "Do they have this symptom?" but the more complicated question of "To what extent do they have this symptom?" that determines where they fall on the continuum. In other words, does each symptom area fall within or outside the typical range?

If your child has difficulties in all three areas (social, communication, and restricted interests) that are outside of what would be expected from a typical child, she would meet the diagnostic criteria for autism. Now, let me complicate things even more for you: there are other disabilities that fall into the Autism Spectrum category.

For example, Asperger's syndrome occurs when the child doesn't really have any delays in language per se, but does have difficulties in social interaction. These children will also tend to have special interests and problems making conversation. For example, we work with one little boy who only wants to talk about lavatories in airplanes. Another only wants to talk about Rolex watches. Kids with Asperger's syndrome can become experts on certain topics, but these topics may be of little or no interest to others, while they themselves often show little interest in what occupies their peers.

Then, there is PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified), also called Atypical Autism. Children are labeled with this when they have only two of the three categories. That is, they tend to have difficulties with social interaction and either communication difficulties or restricted interests, but not both. So, as you can see, over time, in an attempt to make the diagnosis more homogeneous, more subcategories of Autism Spectrum Disorder have been defined.

Hard News to Get

I saw one family not long ago with a nineteen-month-old son - cute as could be. But Caleb didn't say one single word, he wasn't interested in anyone, and he spent the full two hours we were with him spinning in circles. He didn't play with any toys in the room and didn't respond to his name. He had such clearly pronounced symptoms of autism that there wasn't even any question in my mind what his diagnosis should be.

The parents had a book on autism with them and had brought Caleb to our center because the child's cousin had autism. I assumed they understood what we were dealing with and told them that we would be able to work with him. But then they asked if he had to have autism to participate in our center. At that moment, I realized that they hadn't yet accepted that any diagnosis had been made. So, as gently as I could, I said that Caleb appeared to have the three symptom areas associated with autism. To my surprise, they said they were hoping I would say that nothing was wrong with him. Nothing. That word was piercing, and I got that weird feeling like the blood is rushing out of your head.

© 2005 Penguin, a division of Penguin Putnam, used by permission.

About the Author

Lynn Kern Koegel is one of the world's foremost experts on the treatment of autism. She and her husband, Robert L. Koegel, Ph.D., founded the renowned Autism Research Center at the Graduate School of Education at the University of Californian, Santa Barbara. She lives in Santa Barbara, California.

Claire LaZebnik is a published novelist and magazine writer. She lives with her husband and four children in Pacific Palisades, California.