Sunday, December 6, 2015

Time Since Diagnosis =/= Time Since Aspie

So, the post title. Time since diagnosis does not equal time since Aspie. What do I mean?

Well, I"m not sure if it's my own flawed perception of things, or if it's a real thing, but sometimes I find myself lost in the online blog and twitter world of autistic/aspie folks. I love reading and learning and I have always preferred primary sources so obviously in this case, that would be people who themselves are autistic or have a diagnosis of Asperger's or ASD in general. Often when reading I will come across something that makes me want to chime in and offer my own take on things, but I'm always unsure if my commentary would be welcome.

Here's why: I was only diagnosed with Asperger's a few months ago.

I keep thinking "well I haven't been diagnosed long enough to have experienced hardly anything yet, how can I possibly contribute anything of substance?"

But then I always think about the fact that I've been how I am for my whole entire life. With or without the label, I've been experiencing my whole life through this filter for 42 years now. That should be long enough time for me to gather experiences and be allowed to contribute to posts and threads and articles, even if I wasn't diagnosed officially until recently, shouldn't it?

So I struggle with this lately, because on the one hand I"m sure people on facebook are like "why is she 'liking' so many things that have to do with ASDs suddenly? Why is she contributing her experiences on pages about Asperger's?" since I haven't outright announced the diagnosis, and I'm not the only one in my family who has it. I worry that those relatives who were diagnosed before me and/or who have children with diagnoses will see my comments and be offended and think I have some sort of personality disorder where I just try to be a part of every little thing. I worry that the people whose pages I comment on will assume I am a parent of an autistic kid simply because I don't come out and say "I have Asperger's and this is how I see it". Or worse, will assume that I have no association to ASD's whatsoever and am just typing to read my own words.

If you're an active person in the twitter/blog world and you see a newcomer who suddenly is everywhere, trying to absorb as much information as possible, and writing their own blog, do you feel like your space is being invaded? Like someone is just piggybacking on the good work you've been up to all this time? Like the person is just faking in order to feel good about fitting into a social group finally? I worry about these things.

If the conversation is ableism but I was only just diagnosed, am I qualified to participate? (I think I am. I've been a victim of ableism many times regardless of diagnosis. Just a few days ago I went ONCE AGAIN to my doctor to ask if I can be medicated for my Hashimoto's thyroiditis yet, since he always says we have to wait for my thyroid numbers to go wonky before he will treat it. You know what happened? I literally and truly walked out of there with yet another script for Prozac. That's freaking ableism right there if you ask me. I'm a 40-something female with a thyroid problem and the doctor thinks Prozac will fix everything. ARGHHH)

If the conversation is hypersensitivity and overload and I was only just diagnosed, do people feel like I can contribute? I know I can. I've been carrying around stories of problems with sounds since I was too little to speak to tell them to anyone. They're part of why I thought I was broken/crazy for so long.

I don't know. Like I said in the beginning of this post, maybe it's just me. I keep feeling like "well I haven't been diagnosed very long so I better just stay quiet because what I have to say won't matter" or "well but I just have Asperger's and it must not be too horrible because I was able to pass for "quirky", "odd", "introverted", "eccentric", "shy", "quiet", "depressed", "anxious", "stuck up", "stoned", etc etc for so much of my life that maybe I don't REALLY know what people who can't pass are going through" (but to be fair, I don't pretend that I do - I just write about what I know).

So I guess what I'm saying is that even though you might see me around and might read that I"m more recently diagnosed, passed for most of my life til now, and "only" have Asperger's, please don't think that I have nothing to contribute or that I don't know anything or that I'm not enough like you or your child to matter. First of all, every voice matters. Second of all, I think that my voice probably represents a section of ASD diagnosed persons which is most likely to grow and keep growing very soon here - adult females. I think the more we know about the way females present, the more we will start being diagnosed and it will snowball.

So I hope I'm not stepping on any toes when I post my contributions, and I'm not sure if I have to post a disclaimer in every single comment like "recently diagnosed adult female with asperger's" but I do know that I don't intend to do that, because it makes me feel like "less than" and one thing I know is that nobody in this community wants anyone else to feel like "less than".

Which I love.

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