Recently, I have been talking with a friend who isgoing to have her son who has DS evaluated for autism (ASD). We have been wondering if Georgia has an ASD for awhile and I haven't really written about it until lately. Mostly in late night email conversations with my friends. I am finding that writing about it is helpful. It helps me see our situation a little more clearly and so, I think I am going to write about it a little more here. We just got a referral from our developmental pediatrician to have Georgia evaluated, but even though we are already "in the system" the evaluation is likely months off. Here is part of an email I wrote recently which will give some of the background on how we arrived at this decision to have G assessed. I don't mean to be lazy, but it seems easiest to just cut and paste.
Well. Where do I start??? Honestly, we started talking about "maybe" since G was about 3, though we have had all these other diagnoses that it's been...complex...and hard to suss out what is what. When G turned 3 she pretty suddenly developed really bad anxiety--we couldn't even take her to the grocery store without her freaking out. She'll be 6 this December. We weren't sure if it was a phase, or what. We weren't sure what she would grow out of (and we still wonder about this to a degree), but last October (almost a year ago) we finally made the decision to put her on anti-anxiety meds. They have helped A LOT.
she was diagnosed with ADHD. Like, she tested off the charts on the
evaluations. It's funny because we didn't used to think she had ADHD,
but in retrospect, really examining it, I don't know how we were really
functioning. I think, when she was smaller, and less physically "able"
it wasn't as big a deal. As she gets older and smarter and bigger and
braver, it's becoming harder to handle. We started her on meds for that
this summer. At first the meds were miraculous. Really! But they have
worn off over time and we are still tweaking to try to find that "sweet
spot" again, but....it seems elusive.[I really can't explain how
frustrated and sad it makes me that I got a glimpse of Georgia calm and
happy only to have her wake up one day and have a lot of her irrtiablity
and agitation back.]
But G is...rigid. She still has anxiety. And she has bursts of aggression that, again, as she gets bigger, get more worrisome. She has never been the most affectionate kid ever--though she IS more affectionate than someone who "just" has autism. It's tricky. We have spoken to several people about it, including Dr. Capone [at KKI], who is one of *the* people in this field who has studied DS and ASD. Everyone has basically said they have considered it, but let's wait and see. It is not clearcut. Dr. Capone seemed to think that because G is verbal and because she has shown no regression in skills that that has been a good sign that she is not autistic and instead has a bunch of other things going on (in addition to anxiety and ADHD, she has sensory processing disorder and tendencies towards OCD). What a cocktail!! [Let me tell you, hearing Dr. Capone--a man in the know--tell us to wait and see was both hopeful and...frustrating, now that we are still...wondering.]
But the way I see it, is G is getting bigger and older. I have had the question for almost three years now. I think it's time for a formal evaluation. If they told me she had ASD I would not be surprised. If they say she doesn't, I am inclined to believe them. I can sort of see it going either way, but because she is so complex, I want an answer. I am honestly not even sure if a new Dx will help us in anyway. Or if it will change our approaches to therapies and whatnot, but it might. [Maybe it will help us obtain services??]
I often find that I relate more to what people who have a kid on the spectrum say, than people whose child "only" has Down syndrome. So. That's saying something.
I think I should blog about this! [And so here I am!]
Even though I say all this rather matter-of-factly, I have grieved even over the possibility of this for three years, slowly I have come to be ok with the possibility. [More or less.] I think I need to erase the question. And just know for sure. And, even though I am saying all this, if someone says to me definitively that G has ASD, I know I will need some time to really cry about it.