It was in 2013 I think that first talked about Chloe and the possibility that she has aspergers and since then I’ve blogged sporadically about the difficulties we have faced as a family, the decision we faced regarding getting whether or not to get a diagnosis, and once that decision was made, our time on the extremely lengthy waiting list. If you’re interested, you can find all of my previous posts here.
And so it was that Chloe was assessed a few weeks ago. The wait for the diagnosis (or not) was excruciating, although thankfully very quick. We had no idea how Chloe had been in her observation as we were in a separate room. We also were aware the Chloe is capable, on occasion, of seeming perfectly fine (she’s always fine but I mean not displaying any signs of what we suspected). There were times where I hoped there was no diagnosis (meaning there’s hope that things could be “fixed” in simplistic terms) and there were times I was desperately afraid we wouldn’t get a diagnosis (well why do we have the problems then? how can we get help if there’s no diagnosis?)…but both views were accompanied by a constant feeling of anxiety.
As I say, we didn’t have to wait long, about three weeks. I was actually told Chloe’s diagnosis on the phone. The procedure is normally that you would go in for a face to face meeting to discuss the results and next steps (regardless of the outcome), but the assessment team wanted us to have the results quickly as we had a meeting at the school the following day.
To cut a long story short, Chloe has Autism Spectrum Disorder, as we have always suspected. Asperger Syndrome is not diagnosed any more hence the diagnosis of Autism Spectrum Disorder.
I’m not going to lie, the report was incredibly distressing to read, the detail of her observation, in black and white, by professionals, hammered home the problems, making a mockery of the fact I was ever concerned they might not see it.
And it’s hard to even describe how I’ve felt the last few weeks, happy, sad, relived, vindicated, positive, negative… and everything in between. So far though, for me personally it’s had a definite impact on how I view and manage situations, it’s like something’s clicked in my brain…instead of wondering “why is she behaving like this? arghhh!” now (nearly always but not every time!) KNOW why and knowing means I can manage the situation considerably better than I could before.
At this point in time I don’t know whether I will continue to discuss this subject on my blog, Chloe’s older, more aware, and I’m keen for her not to be defined by this label, but equally, it provides an outlet for me and I think talking about this stuff can be a great help for other parents going through the same thing. I have no doubt there’s much more of this story to tell, getting the help we need, family life and so on, but I may choose to keep this private from now on.
But for my blog, and for those who have followed this journey all the way through, I wanted to share the outcome. Thank you to everyone who has supported, shared their experiences and been so kind over the last few years, it really does help.