Jenny McCarthy is an actress and author of the new book “Louder Than Words: A Mother’s Journey in Healing Autism” (Dutton).
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.
Actress Jenny McCarthy details her son’s battle with autism in a new book.
Countless doctors and hospitals couldn’t get to the bottom of it, and 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.’ ”
“Every child is different,” he said. “Some aren’t as severe as others.”
“I don’t understand. How can this be? How can you tell just in a few minutes?”
He looked at me and then pointed to what Evan had made in the corner. Evan had taken those ear cones they use to look inside your ears and made the most perfect row lined up across the room.
“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.”
I looked at Evan and saw that he was “flapping his wings.” I said, “Oh no, he just does that when he gets excited.”
“That is called a stim,” he said.
“A stim. Self-stimulatory behaviors. It’s an autistic trait,” he said.
I looked at Evan and saw him flapping and once again had my heart shattered. I had always looked at it like an adorable Evan characteristic, so cute and unique that I even called him my little bird.
I almost felt betrayed, like I didn’t know this child standing in front of me. Everything I thought was cute was a sign of autism and I felt tricked. I guess the doctor sensed this from me because he turned my head back toward him and said, “He is still the same boy you came in here with.”
No, in my eyes he wasn’t. 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?
I turned into a detective, and thanks to a ton of Google research, the support of UCLA and my DAN! (Defeat Autism Now) doctor, I found the treatments that worked for Evan.
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.”
Not all children with autism will be able to make leaps like Evan. Some parents have worked longer and harder than I have, with no success, trying the exact same things.
I have no idea why some treatments work on some kids and not on others. But I beg moms and dads to at least try. I will work my ass off raising awareness for autism and banging down doors to get answers.
In the meantime, don’t give up hope and remember that acceptance of your child’s condition does not mean giving up; it’s just simply loving your child for being the perfect little spirit he or she is.
That was the shift I had experienced before Evan’s healing even began. Faith is what continues to keep me moving forward.