SOMETHING’S UP WITH JACK #1: Diagnosis 1st Steps

Jack, The Pumpkin King, from Tim Burton’s movie, “The Nightmare Before Christmas”

Welcome to our own Autism Diagnosis Story, part 1 of 4:

Something’s up with Jack
Something’s up with Jack
Don’t know if we’re ever going to get him back

He’s all alone up there
Locked away inside
Never says a word
Hope he hasn’t died

Something’s up with Jack
Something’s up with Jack

(taken from Tim Burton’s movie, “The Nightmare Before Christmas”)

This phrase, “Something’s up with Jack” (always annoyingly paired with the tune of the song) was oftentimes running through my head with our 3 year old Jack.

Watching His Language…and Behavior

As I watched him throughout those days together I would have little “flashes of doubt” with him. It usually had to do with speech. He would be ‘talking’, but all I was hearing were clusters of slurred words. I remember the thought, “he sounds like he’s retarded!” go through my mind several times. But then he would switch and I’d understand what he was saying. So the slurs were cancelled out and all seemed ok. 3 year olds are weird, right?

For example, as I have mentioned many times before, Jack likes to speak in movie quotes. Disney’s “Cars” movie was big at our house at the time. In retrospect, our conversations over lunch were something similar to this: “uhhhhhhhh uhhhhhhhhhh crew chief uhhhhh uhhhh this bad. more yogurt”. I analyze this in hindsight and I believe it equals movie quotes are slurred and real life is more clear.

On Jack’s 3rd birthday

One other big memory I have of 3 year old Jack was spending a lot of time reading with him. We read the same books everyday. Same order, same comments, same mistakes, same corrections, same everything. Could not deviate from the routine. I found myself kind of sad that we weren’t discovering new books, kind of frustrated that it was impossible to hurry through pages, kind of annoyed that I had to endure the same observations about the pictures day after day. He’s just an inflexible guy, I told myself.

I remember the first time I saw him flap his arms. He was pushing buttons on an electronic toy. He was excited and he started laughing and jumping and flapping. It was darling! He looked like a little bird. I pointed it out to my husband when he did it later and we laughed about how cute he was.

I’ll add that at the time that I was starting to notice all of this—when Jack was a new 3 year old—I was at the end of pregnancy with my 5th baby. I was getting concerned, but I was tired. Then I had a newborn. When we finally emerged out of the baby fog, I signed us up for a Mommy and Me music and art class at our favorite First 5 California location. I mentioned this experience in this post, but I’ll touch on it again, it being a turning point for us. We went a few times, and I always came home frustrated. Jack didn’t participate at all. All the other kids sat and did art projects. They sat in a circle and sang and did actions. Jack ran away from the music circle. Jack refused to touch the paint and stickers and markers. Jack went to the back and looked out the window.

One class day, I stopped trying to force him to participate. I relaxed and scanned the small library shelf of parenting books. I do not know why I was compelled to pick up the book about autism, but I flipped it open. There was a list of signs of autism. When I saw the words ‘arm flapping’ I stopped. My heart sank.

I went home to an internet search about signs of autism. I found and took an online test called the M-CHAT regarding his behavior and temperament. The result: a high risk score. I thought about this for a few days.

And then I started making calls:

• to the pediatrician
• to the school district
• to the First 5 California developmental check-up specialist
• to the one friend I knew with a daughter on the spectrum
• to a friend who I remembered worked as a behavioral therapist, who directed me to call the next resource below:
• the county (where I was in Southern CA it was Tri-Counties Regional Center)
• to my parents for support

Then I made a list of my concerns and observations to discuss with all of these people. While I didn’t keep very accurate records of Jack (4th child struggles), there were a few developmental quirks that, in retrospect, stuck out to me as I informally assessed him.

Here’s the list I came of traits I up with:

At this time Jack was 3 1/2:

• 

  We just love our Jack, quirks and all!

  arm flapping when excited

• carefully looks at hands and plays with them together
• repeats quotes over and over
• no waving to anyone, ever
• no pointing at anything, ever
• no interactions or connections with strangers
• toe walking
• doesn’t draw or write, won’t hold a pencil
• slurs words together
• excellent memorizing skills
• no interactions with peers
• no real smiling in interactions
• rare eye contact
• obsession with wearing pajamas
• won’t touch play dough
• reads same books, memorizes, can’t deviate from order
• sits and stares for long periods
• repeats back questions without answering
• doesn’t regularly play with toys
• when in overwhelming settings (like a party), he sits or lays down and acts tired, watches but doesn’t join in.

This was our beginning. I share the next part of our story here. And now…a plea.

>>Please! If you are having nagging thoughts regarding your child’s development, start some research, make a call. If you have legitimate concerns over a loved one’s child, find a way to tactfully prod them into researching the signs of autism. Finding help with autism will improve the quality of life for these unique kids (and their families)!<<