As I've talked about before, we were clued in that there might be a problem around 18-20 months. The major thing of course was that she lost a pretty sizable vocabulary. She had 50 words, and by her 2nd birthday she was down to less than 10. Our pediatrician didn't waste any time, listened to us and made a referral to speech therapy for eval.
At first blush, it was felt that Nea had an apraxia of speech issue. Certainly there were motor issues that clued the therapist in about a problem. The therapist also made a referral to Early Intervention. Early Intervention recommended a developmental assessment as well. Eventually we all met and Nea tested out at a 15-18 month age. Both therapists felt that services were needed weekly (intensely in the case of developmental therapy) and that OT should eval as well. Gosh, these people are serious. I remember thinking "We'll have her up and running and caught up in no time!"
Okay, sidebar. Have you ever seen on OT eval? Seriously, it's the craziest thing I've ever watched. The gal had Nea swinging side to side and spinning in a tire swing suspended from the ceiling. She hung her upside down over a ball pit. She put her on an obstacle course and made loud noises behind her. It was crazy! she almost called forth my Mamma Bear!
Poor Nea looked like someone ran her over, backed up and ran over her again! The girl was stressed like I've never seen her! My brain was swimming..... Of course I was thinking, "You CAN'T be serious!? That's not an eval! Hell, *I* would be upset if you did those things to me!" But A (the OT therapist) was very kind and patient and a great educator....teaching me about sensory perception issues.
D (the speech therapist) sent me an email before our next session and said, "I need to talk to you." Not really words any parent wants to hear. She told me that based on what she had been observing (she had seen Nea almost for a month at this point) and along with the OT eval, that she felt Nea might have Autism. She suggested I see a developmental pediatrician for a confirmed eval and diagnosis.
What?
I'm sorry, What???
And then I began to put the pieces together. All the little "quirks" that made Nea so, well, Nea-ish are also the things that put her on the ASD spectrum. Her speech delays, her jargon speech, her lack of eye contact, her poor play schemes, her lack of pretend play, her lack of not sharing joint attention, her preoccupation with lining up cars and trains, her "getting lost" in wheel movement, her playing with everything at eye level, her hoarding toys constantly....and on and on it went. We knew.
We went to St. Louis for an eval with Dr. Twyman and her team. Wonderful woman, amazing team, very lovely people. I trusted their expertise and their ability to help us understand things a whole lot better. They could start to see some improvement in some of her "quirks" but she still had them along with a delay. Yes, in fact she has Autism.
*deep breath*
This time I wasn't shocked. This time I wasn't freaking out. This time I was ready to get this journey started. Educating myself was going to be number 1, and that takes time.
I have to say one of the things that is starting to drive me a little batty is...."...oh but she's high functioning right?" And I have to say I've found limited information of what the "Autism scale" looks like. I know it's a spectrum, but I don't think it's a true scale. It's starting to feel like society has to assign those particular attributes. Unfortunately we are still living in a world that we believe Autism "looks" a certain way. I don't think that's true. In fact, if you saw my girl at the store, you probably can't tell.
Unless of course, there's a meltdown. Then all bets are off!
Dr. Twyman explained it like this...."She's bright, she has potential...but the Autism is getting in her way to progress." Okay, that makes sense, that helps me. She HAS Autism, not she IS Autism. Makes a difference doesn't it?
What if she HAD Diabetes? Diabetes doesn't define a person, it's just a disease they have. Yes, they have to make certain arrangements to help manage the disease....but it doesn't dictate who they are or who they can become.
I'm going the same route with Autism. It is something we are going to have to manage for her life. Some things we'll do better, some things we won't. But it doesn't limit her potential.
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