A Mid-Forties Butch Aspie
Makes Her Way
(blog originally kept at WrongPlanet.net)
The Road from Here to There - Part 1
Composed on October 31, 2011
I'm starting my blog with this post for anyone who feels stress and whatever else concerning awaiting assessment, going through the assessment process, and being newly diagnosed. As of this moment, my first assessment appointment is tomorrow. I posted some of my concerns in a couple of forum threads in "Getting to know each other", but then it occurred to me that this would be a more appropriate place to present them.
What follows are some of the things I admit I've been uptight about, along with what I hope is an up note at the end.
I haven't had even one appointment yet. I could've backed out as late as this morning, though the 24 hour notice to cancel an appointment has passed now. But I think I'd be sorry if I let being scared cause me to always wonder instead of knowing.
As the time gets so close, I'm starting to feel a little sad, as if I were losing something. But I figure feeling that way may be natural when going through a process like this.
I'm afraid I'll turn out not to have Asperger's and to just be a strange, dense, weak person who has no legitimate excuse for not having tried hard enough to do the things others have expected of me.
Though I probably have nothing to fear from those who are truly my friends, I still think that, if I find out I do have Asperger's, I might be be too afraid to tell the people around me, and then the subject will be awkward for me anytime anyone brings it up. It'll be especially awkward when I'm around the young Aspie guy I'm starting to get to know or anytime anyone talks about him, because I'll feel weird about keeping this a secret when he's so open about it. It would feel wrong to me to talk about it as though I were only discussing others and not myself. To me, that would seem like lying.
So, why be afraid to tell anyone? Well, what if I tell people I've been friends with and trusted all this time and they respond by:
I haven't decided what to do once I know. If I don't have Asperger's, there's nothing to do anyway. But if I do, I don't know if I'll tell anyone or just go on as though there were nothing to tell. My girlfriend doesn't feel she needs to know if I don't want to talk about it - unless whichever answer I get upsets me. Otherwise, she won't mind knowing, but she won't be hurt if I want to keep it to myself, either. I'll most likely tell her if I don't have it, at least. If I do have it, not telling her will have nothing to do with fearing her reaction. She won't be negative about it or judge me or anything. She says I'll be the same person I've always been, so we'll just go on as we have before. I've always loved how level-headed and kind she is.
- not wanting to know that about me because it makes them uncomfortable to think of me that way,
- letting me know they hope I won't try to use it as an "excuse" for getting away with anything I know better than to do and that they hope I won't try to claim that it makes everything I do okay,
- having an "Aha!" reaction because this becomes their explanation for anything they don't like about me,
- becoming condescending towards me and treating me like a child because I have something "mentally wrong" with me,
- not trusting me in general, as though I'll suddenly become someone who might embarrass them all the the time, even if that's not how they see me now,
- not believing me whenever I have a concern about something or assuming I'm overreacting, as though having Asperger's invalidates all my feelings and concerns,
- not believing the diagnosis is true because I function too well and have learned, over the years, too many ways to deal with things, compensate when I have trouble, mask difficulties, and give alternate explanations for things. A friend I already tried to talk to about it at the beginning of the summer started off by trying to explain to me what autism was, because she thought I knew nothing about it. I think she thought I was being melodramatic by believing I might have it. She said she thought I couldn't have it because she'd worked with an autistic client in a residential facility before, and I don't have the stereotypical symptoms she saw in him. Then she warned me to be careful not to use the term "high functioning", because she said autistics are offended by it. So, not only did she think I was too ignorant to know if I should suspect I've got it, but she also deemed me ignorantly "politically incorrect". (Side note: I think political correctness has more to do with being self-righteous than with having any actual respect for anybody. Respect lets you learn if you make an honest mistake. Political correctness means you get to think you're great because you conform to the demands of the opinion of the moment, but it makes you a villain if you fail.)
- thinking I'm claiming a diagnosis in order to get attention, feel special, and get some type of special consideration I don't deserve.
- What if something unanticipated happens that's worse than anything I could have imagined! (Okay, maybe that's a bit paranoid... LOL! Like maybe the whole world will end. ;-)
As for my friends, I can always decide to tell people if I haven't yet, but I can't "un-tell" anyone if things go wrong. Because of this, I think my girlfriend worries what will happen if I'm upset by someone's reaction. And people talk where we hang out, so I can't expect everyone to not know once I tell one person. Sooner or later, word will probably leak out somewhere. And I do have concern for how my shy girlfriend will feel if anyone says anything unpleasant to or around her about me.
In addition, with regard to the medical side of things, I'm concerned about what medications someone will think I ought to be required to take in order to be "properly" dealing with this if my assessment turns up a positive diagnosis. I worry that my arguments about how badly I reacted to even low doses of the antidepressants and muscle relaxants prescribed for fibromyalgia will go ignored or disbelieved, as I've had this problem regarding fibromyalgia drugs with doctors before, in spite of the fact that the doctor who diagnosed me with that saw how badly I reacted to the drugs and eventually took me off them. It was really hard finding a place that would evaluate an adult and take Medicaid; it was even tougher finding a place that also wouldn't make me agree to treatment before I even got diagnosed, as a condition of getting assessed. It should be up to me what I want to agree to, after diagnosis and after knowing what someone wants to do to treat me, not before diagnosis and without knowing anything about what the treatment will be. I may not want to agree to anything at all. I'm in this for answers, not to lose my freedom and get forced into things, whether I think those things are good for me or not.
You know, after all this fuss preceding even knowing how this will turn out,I now find myself wondering if those of us fretting about assessment and diagnosis as adults seem silly to those who have dealt with this all their lives because they got diagnosed as young kids, and I'm hoping all my worries haven't offended anyone. This isn't like coming out as gay when I was a teenager. For the first time, I think I understand a bit better those who come out as gay later in life.
On the other hand, maybe I just think too much!
Even amongst misfits, I've always felt like I'm still a misfit. But when I came to Wrong Planet, I found I didn't feel that way. I can't describe how I felt the first time I watched Autism TV and saw everybody wave at the end of the episode. I know that wave!!! I've done that wave!!! Do you know what I mean? This is very emotional for me. I'm 43, and I've waited a long time for this. While others might think it strange that I'd actually want to have something "wrong with me", that's not how this feels to me at all. I started off just wanting answers - an explanation for things that weren't explained by anything else. But now I realize that's not all there is to the up side. For that reason, I've begun to think it might actually be hard for me if I'm not diagnosed with Asperger's.
Whatever happens, I'm still glad I've found Wrong Planet. I think it's been very good for me. Some of the stuff I've seen and read here has given me courage, other stuff has been of comfort to me. I've e-mailed a link to this site to my sister, whose insight and knowledge led me to undertake this journey in the first place. I know I have her full support, and I couldn't have asked for better!
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