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Autism or not-autism, that is the question.

27 October 2011
Today Hawk, Sparrow and I went to the Children's Center of Utah for the second time. We had an appointment earlier this month and went in for an hour, given some paperwork and told to come back today for a diagnosis.

Sparrow has always been a difficult child. Even in utero. As a baby, he was often very fussy. Swaddling him very tightly helped sometimes, but not every time. He was fascinated by ceiling fans - weirdly fascinated. He has always been a little behind developmentally, which I put down to his premature birth, but he's mostly caught up now. And yet, he still seems behind in many ways. Socially, especially. He does not pick up on social cues. He can't follow a conversation very well - he gives lots of non sequiturs and often just spits out scenes from movies (he memorizes things very quickly, but then never stops repeating it.) I couldn't ask him a question and get an answer until May of this year. He'd just repeat the question back to me. He's extremely sensitive to loud noises - vacuums, blenders, lawnmowers, public toilets... He has to line up his cars Just So and if you move one of them he gets upset. Interrupting his routine, or not doing something the way he expects it to be done, upsets him - sometimes to the point where he's inconsolable. He does funny movements with his hands and flaps his arms sometimes. He only makes eye contact about half the time.

So I wasn't surprised when the psychologist showed us that he met all the criteria for autism. I was surprised when she said he did not score for ADHD. She gave him a diagnosis of "pervasive developmental disorder," stating that she couldn't really diagnose him with autism because he's too young. Which I kind of think is total crap.

I know he has quirks. I agree that he's somewhere on the spectrum. But even if it is autism, it's pretty high functioning autism. And I know that they can diagnosis children with it, so why not give us a straight answer?

We weren't given much else to go on. The psychologist told us to try and enroll him in the preschool at the Children's Center, and gave us the number of an occupational therapist to help with his sensitivity to noises. That was about it. I find myself a little irritated - I would have liked more support, ideas, ways to not kill him, etc. And I honestly don't really trust this psychologist who has only met Sparrow twice, for a grand total of an hour and twenty minutes.

So we'll be getting a second opinion with my family doctor, who has seen Sparrow grow up and knows him pretty well. I have decided to quit our pediatrician because every time I call them I'm on hold for 15-20 minutes and can't get an appointment for 2-5 months from the date I call. That's ridiculous.

It's hard. I wish Sparrow was a normal child. Sometimes I don't know how I am possibly going to survive the next 15 minutes, let alone the next 15 years. I love him and he's adorable and brilliant, but he is a hard child to take care of. And sometimes he's a hard child to love. I don't know. I guess we'll just keep on keepin' on, for as long as we can.

3 comments to Autism or not-autism, that is the question.:

Nisha @ Healthy Mom's Kitchen said...

I LOVE love LOVE our pediatrician Dr. Vargo (woman) who practices at Alpine Pediatrics. I'm pretty sure she sees patients in both Lehi and Pleasant Grove. She's totally worth the drive.

Here's why I like her - she doesn't over subscribe and she's a little more holistic....but not. She doesn't push anything and let's me make the final decisions. She's very respectful.

Good luck getting better direction.

Mrs. Small House said...

I also go to Alpine Peds (even though I live 20 minutes away) because I love our doctor there (Arnold, but I've met Vargo and she's very nice). Anyway, you need to meet my friend Bobbie. he son has autism (and then some) and knows lots of great resources. She's in Ohio right now getting a service dog for his son, but here's her blog about her son: http://dog4deeds.com/
Don't go through this alone!!! There are lots of people who want to help you help your son. (((hugs)))

Jennifer (Jen on the Edge) said...

He seems awfully young to be diagnosing. I'm not saying he doesn't have stuff going on, only that his age is a bit young to be making definitive statements about what's going on. I agree, getting another opinion is an excellent idea.

Even if he does have autism or Asperger's or ADHD or something else entirely, he's still a fabulous kid. And it's the rare kid who's "normal" -- all kids have something going on, whether it's ADHD, obsessive compulsive, oppositional defiant, or a basic case of Juvenile Brattitude.