Yesterday a new Trader Joe’s opened just down the street from me (walking distance, people, walking distance). So of course I had to stop by. As I was wandering up the aisles I was suddenly transported back to Portland. The good part of Portland. The part I loved. And it struck me, once again, as it has so frequently in the last six months, that this is the place (cough, sorry, couldn’t resist) where we are supposed to be. We meaning me and my family. And this place being Utah, not Trader Joe’s. If any of anything that is happening right now were to be happening in Las Vegas… I would be lost.
Last Thursday was The Appointment. The one with the psychologist. The one where we’d get a diagnosis. If you’re a regular reader you’ll remember that I was slightly uncomfortable with that whole concept but as with most things in life it turns out that I shouldn’t have been. He was wonderful. He has been working with spectrum kids, as he referred to them (which actually I quite like and may adopt for my own personal use), for 20 years. It’s all he does. It took him all of about 15 minutes of listening to my concerns and asking me questions, all the while observing Louisa, to indeed confirm our suspicions. She’s definitely on the spectrum. Watching him watching her I had noted an odd questioning look on his face and was thinking to myself “seriously dude? you’re not 100% sure?” but he was. He was merely trying to figure out exactly where she belongs. If you’re at all familiar with ASD you’ll know that in 2013 the DSM-V came out and changed the landscape of autism entirely. What used to be four separate developmental disorders are now lumped under the umbrella of autism spectrum disorder. As with lots of things in this world there are both pros and cons to that. I’m not here to debate them because personally I don’t care. For diagnosing purposes it makes things a little bit easier, according to the psychologist. It used to be that you would have to figure out which diagnosis to give; now if someone meets the criteria for ASD, they meet the criteria and thus, are diagnosed. It is, however, helpful for parents (and healthcare professionals) to know where someone fits because then you know better what to expect.
In Louisa’s case he could figure out two things: 1 – she’s mild (huzzah!) and 2 – she doesn’t have classic autism, a.k.a autistic disorder (which is a good thing). What he couldn’t figure out was whether she is high-functioning autism, Asperger’s or PDD-NOS. I had thought that she was out of the running for Asperger’s because they typically don’t have a speech delay but he said that’s not actually the case and that high-functioning autism and Asperger’s have so much overlap that some people have just started considering them the same thing. He wants to see her again in a year because at 3&1/2 it is often easier to tell where exactly someone fits, but the takeaway point is that she is mild. With lots of various therapies she has a pretty good prognosis.
And just like that most of my anxiety (read as: freaking the fuck out) ceased. Obviously we still have a long and probably rough road ahead of us, and the future is still anybody’s guess, but he seemed so optimistic that I guess it rubbed off on me. Or maybe just finally having an answer after six weeks of wondering, worrying, sleeplessness and heartache took me out of holy-shit mode and put me into WE-CAN-TOTALLY-DO-THIS-GUYS mode.
We are so lucky. I know. My daughter was just diagnosed with autism and I’m saying we’re lucky. But if I’m looking on the sunny side of things which, as you know, I am so good at (PAH HA HA), things could be so much worse. We could still be in Nevada (no offense, Nevada, you just didn’t do it for me). This could have happened while I was in the hospital already worrying myself sick about Simon. She could be so much more severe. Plus, we caught it fairly early. We have so much time to do so many things.
As it stands, there is a wonderful school here for spectrum kids. It has a waiting list but she’s only 2&1/2 – we’ll probably eventually get her in. And if not there are many other available resources. For us and for her. There will obviously still be bad days and he told me lots of things that both scared and saddened me but he also told me things that made me feel very optimistic about our hazy future.