What Is Autism Anyway? Part 2

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

(Page 6 of 6)

I pointed out Caleb's specific symptom areas - that he wasn't talking yet (notice I said yet), that his social areas appeared to be a little delayed, which could happen if he wasn't talking, and that while he didn't interact much, he did seem to enjoy cuddling with his parents, which was a great starting point. I told them that there were good treatments available and that we would just take one symptom at a time and work on each one, and I was confident we would make progress.

The dad, who was quite well read and informed, said that although he agreed that his son didn't talk and wasn't interested in others, he really didn't see any restricted interests in his behavior. Very gently, I pointed out that a typically developing child of Caleb's age would be playing with toys and getting into things, but he was spending most of his time spinning, which would be considered a repetitive stereotyped behavior. The dad looked shocked. And I felt horrible. Maybe people who work at diagnostic centers and break the news several times a day get used to it, but I still haven't.

The father stopped talking and looked down, his shock turning to depression. Interestingly, the mother began to open up - she almost seemed relieved to air all the concerns she'd had about her son. Once again I reminded them that autism is just a group of symptoms, that there are good interventions available, and that the most productive way to proceed would be by addressing the symptoms one by one. We would begin with teaching Caleb words using motivational procedures (see chapter 2, "Ending the Long Silence: Teaching Your Child to Communicate"), which would be likely to help his socialization and decrease the spinning.

I knew that all the helpful advice and hopeful suggestions I gave them still wouldn't make it any easier for them to get that diagnosis. (As a follow-up, we have worked with Caleb for about two months, and he's now saying about seventy-five words, has a bunch of social activities he loves, and only spins when he's not engaged in one of these activities.)

My Own Experience

Although I can't pretend to understand what it might be like to have a child diagnosed with autism, I have experienced what it's like to know there's something wrong with your child and not know what the outcome will be.

When I was pregnant, I had placenta previa. That's when the placenta covers the opening of the uterus, making it impossible for the baby to come out. The first sign of a problem was some blood spots during my third month of pregnancy. Distressed, I called up my doctor, and his response was shocking. He didn't invite me to his office, he didn't counsel me, he simply and abruptly said, "You're probably going to have a miscarriage. I've gotta run, I have a patient in my office. Don't worry about it." This was my first experience of what it was like to be at the mercy of an unsympathetic doctor.

I changed doctors after that, and psychologically, everything was better with the new obstetrician, but I continued to have bleeding, and when I was five months pregnant, I was put on bed rest and then hospitalized.

When my daughter was finally delivered, I immediately knew something was wrong. They didn't hand her to me as they had my first child. Instead, they rushed her into neonatal intensive care. When the pediatrician came to see me some time later, he said, "She's got an eighty percent chance of survival." I cried out, "You mean she has a twenty percent chance of dying?" He seemed surprised by my outburst and completely unaware of what it means to a parent to be told that her child's outcome is uncertain and possibly tragic. To him, the odds were still in our favor, and that was what he lived by - odds. But all I could see was that 20 percent possibility my baby could die. My husband told me later that the whole experience had been just as bad, if not worse, for him, as they were taking him aside and giving him these statistics all the way through. (She's a healthy, happy teenager now, I'm glad to say - I wish I'd known that then.)

I can't even begin to claim that my experiences compare in any way to finding out that your child has autism. But I can empathize with the pain of finding out that something is not right with your child and the fears that an uncertain prognosis can lead to. Over the years, I have talked with thousands of parents of children with autism, and I can tell you that getting the news is horrific, terrifying, stressful, and depressing. Parents react in different ways; they cry, they get mad, they deny that their child has autism. Sometimes they even accept it resignedly - but it's never easy.

No Way to Prepare Yourself

There are no known prenatal tests that can alert or prepare a parent for the shocking diagnosis of autism. Even after a child with autism is born, there may be signs early on that the child is not developing typically, but most new parents don't recognize or know to look for these signs. Therefore the family often assumes, for the first year or two of life, that everything is fine, especially because most of the motor milestones - sitting up, crawling, walking, and so on - seem to happen like clockwork.

For most parents, it's not until their child is eighteen months or older and still not talking that they start to worry and ask questions. Even then, they're likely to be told by friends and pediatricians that language develops at different times for different kids, and not to worry about it. They can lose precious time because of this.

There are some earlier signs (before words are expected) that can help you recognize possible symptoms of autism, if you know what to look for. For example, the child may not enjoy playing little games like peek-a-boo and may not point to items, preferring instead to take her parent's hand and place it on the desired object, such as the doorknob when wanting to go out. The child with autism may not respond to her name when called, or she may play with the same toy over and over again. Some parents even report that their child never cried for them when left in her crib but seemed content alone for long periods of time.

Of course, parents tend to remember these things after their children have already been diagnosed, but the truth is that most parents don't usually become very concerned until they notice that their child is not starting to talk.

© 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.