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Diagnosis: Autism

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.

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, 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.



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From Overcoming Autism by Lynn Kern Koegel, Ph.D. and Claire LaZebnik. Copyright 2004. Used by arrangement with Penguin Group (USA) Inc.

If you'd like to buy this book, click here or on the book cover. Get a 15% discount with the coupon code FENPARENT.


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