Sunday, April 17, 2011

In the beginning, there was Chaos.

My journey with autism did not begin with diagnosis. In one moment, I knew immediately what was wrong with my son. I remember the feeling because I had only had it once before- a year and a half earlier, right after Wylie was born. Then, the doctor had said he was shaking a lot. He WAS shaking a lot. Something they saw a lot in premies- but Wylie was a bowling ball, ten pounds. They took him away for observation. Talked about maybe seeing a neurologist. I felt the blood drain down to my toes and I crumbled.

And I crumbled again, that day in June, when my unease with Wylie’s behavior finally peaked.
He was always odd, really. I watched him all the time. I’m that type of person, you have to know. I remember right about the time I found out I was pregnant, we got this baby collection in at work. There was a plate that read something about “The Perfect Baby.” It really struck me as… wrong. Haha! I just remember reading this stupid plate, that went on about “Ten perfect fingers and ten perfect toes” and I just laughed sardonically, thinking about some idiot buying it for their pregnant friend, who would go on to have some nine toed baby. I mean, really. What if the baby had a cleft palate?  Did you really want to give someone a gift which implied that for a child to be “perfect” he would have to be aesthetically typical? It was offensive.
So, by the time we had our hospital scare with Wylie, I was on high alert; a little high strung about milestones and typical behavior. I don’t dwell on the negative and I’m not much of a real worry wart- I have always just found comfort in being prepared for the worst case scenario. And when it came to Wylie, in hindsight I just remember strong gut reactions to certain mindsets that just didn’t sit right with me. For example, the only “milestone” Wylie reached late at this point was crawling. I was kind of a drill sergeant with “tummy time” because of this and my mom would just scoff. “Kids eventually talk. Kids eventually walk,” she said. I remember thinking, “Well. That’s just ridiculous. Some don’t. SOME don’t!”

But Wylie crawled at 8 and a half months, and walked at 9 and a half months, and said “Uh Oh!” when I dropped his bottle a week before his 1st birthday. “Mama” and “Pretty!” and “Thank You!” and “Ball” and “Doggie” followed. By the time he was 15 months, he had 15 words, and I stopped worrying. It’s laughable now- the feeling of relief I got. “There’s nothing wrong with my baby. Look, he’s talking!” Actually, talking quite a bit!

And then he just stopped.

I remember not wanting to believe he had really stopped talking. I say a lot that Wylie stopped right after his shots (not because I really believe there is a correlation, but I do think I get why this false cause fallacy is so hard to overcome, because so often a set of shots coincides with regression) but… I DO remember bringing it up with his doctor at the check up. I remember saying “He isn’t saying them as often, do you think he’s just kinda moved on now that he knows them?” She responded reassuringly, by the way.

He did not just stop talking. He stopped interacting with me and my husband. We didn’t really think of it that way. He was just suddenly very hard to please. It was still pretty easy to elicit a smile from him- we would make faces or throw him around a bit, having him fly through the air. But he ignored us, and he wouldn’t come to us. I would call him over and over, just to get no response. I could not get his attention.  He wouldn’t play with me. I remember after all the baby clothes and expensive junk just GIVEN to me, just like that, from strangers, the moment I began to show, I was so exhausted with material things I was sure I was ready to go all “Spartan baby” and not do birthdays and presents until Wylie was much older. And then here I was, a year and a half later, and I would comb the stores and online for the perfect toy. Something that Wylie would like. Cuz like I said- he was so hard to please, and he didn’t like any of his toys.

Every time I read on the internet about the early signs of ASD and I get to “lack of joyful expression” I always feel this does not represent Wylie at all- he’s FULL of joyful expression and always has been. But at the same time, I remember that was what I thought was wrong. Somehow I had an unhappy baby. Not overly unhappy- he wasn’t crying all the time. He just didn’t seem to do anything, or have any fun. He loved Spongebob. That’s about all he loved. And I remember getting so fed up with both him and Spongebob that I snapped the TV off one day and said “NO MORE SPONGEBOB!” Ha. That was that. Foot down.

He took my hand and brought it to the TV. “Not a chance!” I thought and dropped my hand dismissively. He took my hand again and brought it to the TV. And like that, my brain seemed to “click On.” My heart started racing. The article. The article about the earliest signs of autism. A little boy wanted a cookie, so he brought someone’s hand to the cookie jar. But he never looked up. He never made eye contact. I looked at Wylie and waited for him to make eye contact. He never did. The blood drained down to my toes again. I thought, “Oh. He’s Autistic. I have an autistic child.” And that was that. I never thought differently again.

It was another month and a half before he was diagnosed, after his pediatrician shrugged off my concerns initially and then looked paler than a ghost a month after that, when Wylie flunked his MCHAT miserably (“2 red flags or more would concern me. Wylie had 12,” she said, glossing over the fact I had an MCHAT in my hand filled out a month before and she wouldn’t look at it…). I cut her off when she tried to stammer through developmental pediatrician recommendations- I had already made an appointment. Because I knew already. The very next day, before our two hour evaluation even began, the developmental pediatrician knew, too. We had our answer. ASD- moderate to severe. (Whatever that means. Maybe nothing.)


  1. Thank you for sharing your story.:)

  2. The "How it all began" stories are so emotional. Bits of yours certainly resonated with me: I knew before the official diagnosis, too. Thank you for telling your story.

  3. In my crazy world I am just catching up on reading all the blogs that I am supposed to be following...this is awesome! This is so true of "how it goes"...and piece by piece I believe us parents put these children together diagnostically. I would love to share this with the page if you would be ok with it.

  4. Aw, thanks for all your kind words. I think it is really interesting how different everybody's journey can be, I know sometimes people feel like they are hit by a bus at the time of diagnosis and some people have known for a long time something was "off" so I decided to share part of my beginning.

    Jessica, be my guest! I would be honored!