One More Piece of the Jack Puzzle

A couple of months before Jack’s 12th birthday, I submitted a request to his pediatrician to get an autism evaluation. I’ll save the explanation as to what things prompted me to do this for another time/post, but I will say that it was a long time coming. (This post, on the other hand, was not! This is a pretty fresh take, so I apologize if it’s disjointed.)

On Friday I met Jack and his dad at Kaiser’s Autism Spectrum Disorder Center in San Jose. Before the appointment, I was sent what felt like a million forms and surveys requiring that I detail every single factoid I could about Jack’s development and life experiences (this blog came in very handy!). And when we got to the center I filled out even more forms while Joe and I were interviewed thoroughly by one psychologist while Jack went through a couple hours of testing and observation (some of which we got to see from an observation room behind a mirrored window) with another psychologist.

After three hours of this, the psychologist gave it to us simply and firmly: Jack is on the “high functioning” end of the autism spectrum. We were not exactly surprised (after all, there were reasons we were seeking the evaluation) – when all of the clues are put together right there in front of you, it’s fairly easy to see the answer. But before Friday, none of us had a firm guess one way or the other as to how this would come out. We went into this process thinking we might as well rule autism out, and we came out of the appointment with new knowledge about all the signs we had missed before.

The resulting diagnosis was not a surprise, but it was a lot to process. I am still processing.

I talked to Jack about the diagnosis on the drive home (I used this very helpful post from The Mighty to springboard our conversation), and he was actually pleased by the news. He often feels different and separate from other kids and now he has some explanation as to why. (Btw, he said I could share this info and write about it.) Our conversation went incredibly smoothly and then we moved on. He seems to have very little interest in talking about it beyond that.

In any case, this diagnosis doesn’t change who our child is; ASD is just another piece of the puzzle and will help us determine the best ways to support Jack in life. We’ll get additional resources through the community to help prepare Jack for the future, and I think we’ll learn how to be better parents and advocates for him as we learn more about what it means to be on the spectrum.

I think it’s kind of funny that this is just one more way that I’m “parenting left of the middle.”

4 thoughts on “One More Piece of the Jack Puzzle”

  1. I’m not sure how I stumbled upon your blog years ago, but I have enjoyed reading your parenting insights. I wanted to say hello and welcome you to the world of HFA. Our newly-turned 11 yr old received that diagnosis about six months ago. Like you, we were not surprised, yet the feeling of “this s%^$ is getting real” was something. 🙂

    If you’re interested, DS and I really enjoy this vlog. She’s a kick-ass woman who is autistic and owns it in every way.

    Thank you for sharing your family with the world. Best of luck to all of you.

    1. Thank you for the resource! I will check it out!

      How has your family been doing since the diagnosis? Have you gotten additional resources? I have seen some people say that they were referred out very quickly and others have to wait quite some time to get things like OT.

  2. So many of these HF kids slip through the early intervention cracks. Something I had to remind myself a lot since January: my kid hasn’t changed. He’s always been like this. We just didn’t have all the information. We didn’t have a name for it. Now that we do, we can support him better. We can coach him on the things that don’t come naturally, help him find ways to cope with the things that are overwhelming, and support him in the things that he loves.

    And we can be strong advocates for autism acceptance and change in society.

    1. I can’t stop thinking about all of the times when someone (pediatrician, oncologist, neuropsych evaluator – ANY of these) should have suggested that Jack be tested. I know you are right that the high functioning kids get overlooked. And maybe it seemed like because we were managing well enough, no one thought we would need services. But I wonder how much grief could have been prevented if we had known earlier.

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