Actress Jenny McCarthy is the author of the new book "Louder Than Words: A Mother's Journey in Healing Autism" (Dutton). She talks about her son's autism on "Larry King Live" tonight at 9 ET.
02/13/2007 - Jenny McCarthy - © David Gabber / Photorazzi
"I didn't know what was going on with my son Evan. One day he was a completely healthy 2-year-old and the next he kept having life-threatening seizures."
McCarthy speaks to CNN and details her son's battle with autism in her new book.
"No one could figure out the right diagnosis. We continued trying different anti-seizure medicines, but they either made Evan act psychotic or like a zombie. Finally, I got an appointment to see the best pediatric neurologist in Los Angeles.
I was beyond nervous in the doctor's office. My heart was beating so loudly that I bet Evan thought it was a drum in the next room.
When the door opened and a sweet older man walked in, I immediately felt good. I started telling him about all the seizure activity and what had been said so far about Evan. He listened closely but had his eyes on Evan the whole time. I could tell he was evaluating Evan and his bizarre behavior.
He asked me a couple of questions and seemed very peaceful about the whole thing. I was starting to feel more relaxed as he played with Evan, and then he stood up and opened his office door and told his secretary to cancel his next appointment. I thought to myself, 'Wow, he must really like us. This is some big VIP treatment.'
He closed the door and pulled his chair up close to mine and put his hand on my hand. He looked at me with sorrowful eyes and said, "I'm sorry, your son has autism."
I just stared at the doctor while remembering all the signs that led up to this moment. I felt each membrane and vein in my heart shattering into a million pieces. Nothing prepared me for this. I couldn't breathe. I wanted it gone. I had been through so much with seizures and psychotic reactions to meds. I looked at the doctor with pleading, tearful eyes, 'This can't be. He is very loving and sweet and not anything like 'Rain Man.' "
The sting of finding out your child has a lifetime disabilty is a hard day for any parent.
"Every child is different," the doctor said. "Some aren't as severe as others."
The doctor told McCarthy that telltale signs were lining up toys, and repetetive behaviors were key observations in diagnosing autism.
"Does he line toys up at home instead of playing with them?" he asked.
"Yes, but don't all kids do that?"
"Nope, not all," he said. "And they all don't flap their arms like that either."
Self-stimulatory behaviors like arm-flapping are giveaways and considered an autistic trait.
McCarthy was heartbroken and in shock. "This was not Evan. Evan was locked inside this label, and I didn't know if I would ever get to know who Evan really was. All the behaviors I had thought were personality traits were autism characteristics, and that's all I had. Where was my son, and how the hell do I get him back?"
The diagnosis made McCarthy fighting mad, and she became an expert educating herself, surrounding herself with experienced people in the field.
"Evan is now 5 years old and able to communicate completely. Since we can talk, I ask him questions that I so badly wanted to know the answers to during the crisis. When I asked him why he flaps his arms, he replied, 'Because I get so excited and then I fly just like the angels do.' "
McCarthy's hopes for her book and press tour are that parents get mad too, and fight for answers and not give up, to try as many therapies as they can.
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