PonderEthereal

(cross posted to Trusera)

I have been through getting a diagnosis for both myself and my son.

Asperger’s Syndrome was recognized as an official diagnosis in 1994. That means that there are a great many adults who have this disorder who never got a diagnosis. As an adult with Asperger’s Syndrome, not having a diagnosis really sucks. But getting one isn’t necessarily a walk in the part either. Sure, there is a lot of relief. But there is a whole lot of anger and resentment as well as a re-sorting and re-shuffling one’s self and one’s life. Getting a diagnosis for a child is the same process - only on behalf of them instead of for one’s self.

In It’s official, I talk about finally being sure that this ‘thing’ that has plagued me my entire life has a name. For me, it was really important to have a diagnosis, even as…

cross posted to Trusera

Sometimes I look back at my blog and I’m so glad that I had the presence of mind to write some stuff down. When I look back over my past entries … before the AS dx, I’m again, glad that I wrote it down as I went because otherwise, it might be too easy to wash away all the ‘not knowing’ in the glow of the ‘knowing’.

For the first part of my life, I was just a badly behaving child. The intricacies of what it is like as a kid on that side of things - and what it’s like struggling to parent an AS kid, i’ll save for another post. However, there was some point during my life when I started to notice that i was different and started to willfully struggle against it. Not just different in that I listened to different music or wore…

Travel has never really been a part of ‘things I enjoy’. The whole idea of being away from home, potentially staying in hotels or not knowing where I am or what’s around… it all scares me. In fact, I’ve always said I would want to see Tibet and Greece - but I always ‘knew’ I never would because the idea of travel is so daunting.

Travel has always been a struggle for me. I have such odd issues with spacial balance that if I can’t come back to a space where everything is where I expect it to be, I grow very restless and moody very quickly. Being clean is a weird one too. I don’t like showering in showers that I didn’t clean. My shower at home can get grubby between cleanings - but at least I know where that grub has been! :) Every time I travel, it’s…

We had a follow up meeting today with the psychologist who did Ethan’s assessment. The meeting was to go over the diagnosis and to discuss moving forward. She patiently explained every bit of the testing and why it shows that he has AS.

As we move into this new territory, there are several thought processes that come to the surface. They could probably be in posts of their own. In fact, I could easily devote an entire day to discussing each of these points and create an entire ‘As the DX Smoke Clears’ series. I’ll spare you that. Instead, it’s a lengthy post.

What If?
The thought has often occurred to me - what would I have done if the dx had been different? How would I have felt?

Had it come back and said he was perfectly ‘normal’, I would have been frustrated times ten. Much like when Michael’s psychologist came…

Now I’ve got a ream of paper analyzing my son’s reasoning, brain power and learning methods it’s a matter of getting some form of cohesive action plan put together. There are some great action items at the end of the report so I’m starting through those. I’ve enrolled him in a group session starting next year and I’ve submitted written requests for testing through his school.

This is what I’m good at. I’m good at very methodically preparing and prepreparing and preprepreparing and organizing it all into neat presentations and exploring the ifs and organizing those too. I have Asperger’s Syndrome, after all. That’s just every day survival for me. If I don’t prepare, I’m lost.

The irony of this whole advocacy situation is not lost on me. I will need to advocate for him and where that fails, advocate for myself - while teaching him to be his own advocate.…

I was going to post this morning about how Ethan stole some stuff the other day, lied about it and forged a note from his teacher and about how I’m so damned anxious to get all of this under control and about how the awaited report still isnt HERE. And I was going to add a little extra whine here and there about how my sanity hinges on this fucking report being in my hot little hands. But then, today in my mailbox, was the report.

I have to admit, the first time through, I skimmed to the good part. The part when the doctor uses all of her professional knowledge, expensive education and the FOUR WEEKS it took her to compose the report and gives me an educated idea of what’s going on in his little blond dome. I skimmed and skimmed and skimmed… past ten pages of test,…

me: “I bet her teacher probably doesn’t think there is anything wrong with her when she behaves in school. I bet she melds right in….”

me: “… well until she looks up at her teacher with those wide, searching mis-expressioned eyes and states something outright in that halting but oddly annunciated way of speaking in the too-loud voice with the wrong inflection.”

me: “then the teacher would know that her sense of normalcy is misplaced and that there is, indeed, something wrong.”

me : “Something wrong? Why must something be WRONG? Why do I still see this stuff as ’something wrong’?”

me : “As much as I hate to admit it, I do it to myself too. When I totally say the wrong thing or don’t have a script to play back or stand too close or don’t know how to react or come close to a meltdown… I still think of it as ’something wrong’.”

me: “I don’t think there…

Where Asperger’s Syndrome is concerned, I think that the major thing that a diagnosis has changed for me in the last 6 months has been developing a stronger self identity. When I was a kid, I never really identified with the ’shoulds’ and ’should nots’ of others. They just didn’t make sense. So I just grew to expect that everything that others did just didnt make sense.. but I should do it anyways. So everything that someone else said they liked or that someone else did, I emulated and did it. Like trying on identities. Only, I was doing it because I thought I was supposed to.

It’s no suprise that my life has never really fit me. Not just the big decisions I had made.. those were wrong for different reasons.. but the small things that make up who I am to the outside world. The things you write…

And that… is really what’s at the center of this whole thing. A standoff between the part of me that functions normally and the part of me that dosnt. And that’s what hurts. That I feel like part of myself betrayed me.

Somehow, I dont think I will really truely feel like I know until I have that piece of paper in my hand with the scoring and the official diagnosis. I feel like I should get a certificate and get it on my ‘permanent record’ or something.