Sunday, February 21, 2016

Inspiration Porn and Tone Policing - my day so far.

I am a follower of an Asperger's Awareness group on facebook run by a young man with Asperger's. He often takes questions from parents and other adults who do NOT have autism, and share them on his page so we can all help answer the queries from our perspective. He also has parents there who generally are kind and thankful to have our input.

Yesterday the page owner posted a comment from a school nurse who said she had a group of students in year 10 who she was going to talk to about autism and asked if there was anything that we autistic people would like those students to know or understand. My reply is below.. unfortunately so is the reply from a woman who doesn't get it. Her reply is what has me so angry right now. (Transcript of both are at the bottom of the post)

[Transcript is at the bottom of the post]



So. I was asked if there was anything that I, a person with ASD, would like this nurse to teach her year 10 kids and I explained please explain to them that othering exists and is bad, and that inspiration porn is bad, and here's why.

And this lady comments to tone police me, talk over me, and trivialize everything I had to say as well as the perspective from which I am answering.

Her authority in this comes not from being autistic like me. Not from having an autistic child. Not from marrying an autistic spouse. Not from being a special needs teacher. Not from being a therapist.

Her authority comes from having a sister who has two children who both have Asperger's.

Did the original poster ASK For input from people who know someone who have kids who have Asperger's? No.

Did I ask this person to read my response and critique it? No.

So WHY did they feel the need to single ME and ONLY ME out from the long list of commenters and tell me to CALM DOWN!!!!!!!!!!! and tell me I have a CHIP ON MY SHOULDER (what does that even mean in this context? Doesn't that mean she assumes that the things in my post happened to me and I"m still pissed off about it? Because I assure you that I've never been a girl with down's syndrome who was nominated for prom queen. I wish I had been but I wasn't. Instead of prom I went to the Battle of the Bands with my boyfriend who played Bass in one of the competing bands. And it was awesome. But a prom might be a neat thing to add to my list of experiences as well, though the one formal I did attend was boring enough to last a lifetime to be honest.)

Anyway. The link to the original question and my comment is here - https://www.facebook.com/AspergerSyndromeAwareness/?target_post=928197437296057 - if anyone wants to add their own two cents.

I did not appreciate being tone policed and hollered at and talked down to. Thanks for any support of my position you lovely people might be willing and able to add. <3

Transcript of question, my response, and the tone-policing mean-spirited person's reply to me:

QUESTION:
"I am a secondary school nurse and our year 10 students have said that they would like to know more about Autism. Is there anything that you or your friends would like them to know? We will be having a discussion in class Monday and I will be sharing some of the information that you have put up on your page"


MY RESPONSE:
"That they have to stop thinking that they're a group of kids wanting to learn about a different, other group of kids. That "othering" is a thing, a bad thing. That inspiration porn is BAD. That if you write an article about someone with a disability, you need to ask yourself "if that was me, would I be SO proud to read this article about myself and want to show everyone? Or would it humiliate me and make me feel like everyone is patronizing me?" and that if you're writing an article about, say, a girl with Down's Syndrome being nominated for prom queen, you damn well better write a story about every single other girl who was nominated too or else you're producing inspiration porn and have already failed at diversity and kindness. Don't single out disabled people to USE to make yourself feel like a hero.. in fact don't USE PEOPLE at ALL."

THAT MEAN LADY'S TONE POLICING RESPONSE TO ME SEEKING TO BELITTLE AND SHUT ME DOWN:
"
CALM DOWN!!!!! Only with knowledge can we understand our many differences. You seem to have a large chip on your shoulder and YOU need to RESPECT the way others choose to learn. I have a niece and nephew , both who have Asperger's and my sister would be the first to encourage anyone to gain some understanding in whichever way is offered to them. How can that demean anyone with a disability? You are overthinking!"

Link back to original discussion: https://www.facebook.com/AspergerSyndromeAwareness/?target_post=928197437296057

Sunday, January 24, 2016

Why I Haven't Been Writing Posts

I haven't been writings posts lately because I realize more and more how little I know about how to word my own perfectly valid and important thoughts and feelings so as to not come off ableist, shiny aspie, or just plain ignorant.

I have a lot of emotional and personal things I want to deal with via blogging but until I feel like I have a better handle on how not to make myself unwittingly seem like a colossal douchebag I'll probably be pretty quiet for awhile longer.

Also because I don't know how many of my actual friends and family might read here and I still don't know how I feel about putting a lot of things out there.


Saturday, January 9, 2016

Stimming is a New Word but Old Activity for Me

I'm reading about stimming, which drives me insane when someone writes "stemming" instead, because "stem" is not shorthand for "stimulation", but I've already gone off on a tangent haven't I? This should be fun.

Anyway, I didn't know about stimming until the age of 42, and I didn't know that fidgeting and nervous habits are the same thing as stims, once you're diagnosed. Or at least for me they are. Things I always figured were "nervous habit" I now recognize as stims after reading many blogs, forum posts, articles, books, etc.

Like, I pick. Any scab, pimple, irregularity of skin texture, is gonna get picked. I can't help it. I remember being four years old and people trying to get me to stop. I can't and won't, I need to pick. I do try not to do it in public though. Except cuticles, that's my current go-to stim and has been since 2011 or so. I've got a couple of scabs that have been on my neck and shoulder and back of the head for over a year because they don't heal because I pick. I can't help it.

I also grit my teeth and grind them and sometimes push down harder with some teeth than others in a particular order because I thought it was an invisible "nervous habit" but I guess people see it after all because my psychiatrist wrote in my diagnosis paperwork that I have several non-functional and repetitive things I do, including picking and foot tapping and teeth grinding. *sigh* so much for finding a stim that doesn't show in public. I tried.

I almost wonder if my toe-walking as a kid was a stim. I don't remember anymore why I did it. I still do it but now it's just how I walk, as if the tendon was too short or something. I dont walk on the heel at all. I've seen a video of someone walking "normally" (I find this hard to believe), where a person lifts their leg, moves it forward, sets it down ON THE HEEL, and then slowly puts the rest of the foot down until the ball of the foot is on the ground, then the heel starts to lift up OFF the ground, while the other foot moves.

This is insanity. How can anyone put their heel down and not fall over backwards? I can't do that. I use the ball of my foot to walk, and lean forward, and off I go. I don't think I look like I'm always falling and catching myself or anything. I mean I wasn't even diagnosed until I pursued it myself, and I've been evaluated for foot troubles and stuff before and never had any trouble with my gait noted, so I don't think that's real about people putting their heel down like that when they walk. I mean seriously, I want to see someone walk on their heels and not fall onto their butt. Then tell me that people really walk that way. I'm not buyin' it.

-----

edited to explain that for some reason I left this as a draft for several months and never published it. Maybe because it reads more like a diary than a blog but to me they're one and the same, except in an exhibitionist kind of way.

So I shall publish it now even in this somewhat unfinished form. I've spent much of this morning picking of course.. just what I do. I don't bother to try to hide it any more, or anything else that might be socially unconventional. The only way to bring about a new norm is to behave a new way. So I'm going to just be me and let the world deal with it.

Wednesday, December 30, 2015

AYITLOAutism just wants us to know: they're autistic.

TW: hate speech, hurtful words, AYITLOAutism references.

I happened across this "A Year in the Life of Autism" page on twitter when they were pimping it out and asking for more likes to break the 10K mark before New Year's Eve. I did not reply to them or DM them. I simply retweeted their post and asked my #ActuallyAutistic friends whether this was or wasn't the same people who the community got so upset about due to their #silentselfie campaign a few months ago. Amy/Dean/their page representative got a hold of me there to respond to my query (even though I wasn't asking them). Their response was "erm, I'm autistic."

Okay either you're diagnosed recently, or have always been diagnosed, or you're lying to shut me up. I don't care any way about it because the bottom line is, being autistic isn't your "get out of jail free card" and doesn't mean you can say or do whatever you want without repercussions. I won't even touch on that whole situation. But why are you still defending all the past harm you've done and pretending that it's okay by saying "I'm autistic"?(Not to mention you could've ignored my tweet, or replied with an actual answer to the question contained within it, instead of just attempting to put up the "I'm autistic" force field.)

[image description: screenshot of twitter where I asked, "wait aren't these the people who every person on the internet despise & wrote hate pieces about?" and they replied, "erm I'm autistic myself?".]
I asked a simple question - "is this the same page that all of my autistic friends were so upset about a few months ago" - yes or no? They provided a simple, yet bullshit and useless, answer: "erm I'm autistic myself?".

If someone spews anti gay hate speech and then says "hey I can say this because I'm gay", is that okay? If someone stands around hollering "n***er" this and "n***er" that and you call them on it and they say "my grandmother was African American" does that make it okay? If a person is arrested for child abuse and defends themselves by saying "BUT I WAS ABUSED MYSELF" does that make it okay?

So you're autistic. That doesn't give you the right to be a complete tool. When someone goes through the effort to teach you, you should realize that now that you know better YOU HAVE TO DO BETTER. Don't sit back and delete all of the actually autistic people's comments and then post / let your followers post that the retards forgot their meds today. (or whatever it was that people were saying back then - here's a page that contains a small sampling of what went down a few months ago - not my page, don't know the person, just trying to give some context  http://thingsautismparentssay.tumblr.com )

and here is a far better one that gives way more details: http://timetolisten.blogspot.com/2015/08/stop-proving-me-right-more-on-year-in.html.

Here's another, more well thought out and written piece than I can muster up at this point about why their page is, or was, utter garbage. I don't know the state of it now because I do not care enough to look. I wasn't intending to give them this much time and energy in the first place, I just wanted to ask my friends a question, but if they're going to go out of their way to track me down on twitter and imply that they're untouchable because they paid to get their own diagnosis that matches their child's so can now say whatever the heck they want, then I just can't sit back and ignore that. Being autistic is not something you use as an excuse to get out of being held responsible for your own words and actions.

http://adiaryofamom.com/2015/08/17/dear-amy-and-dean/

Look, if you don't like autistic people then you don't like yourself or your kid. If you do like us, treat us with some respect would you? And for heaven's sake do not respond to people who criticize you with "erm, I'm autistic". You're also a man/woman/white/black/gay/straight/whatever religion - those things didn't make you a tool and neither did your autism so keep them all out of this and stop trying to blame your shitty choices on your neurology.

Choose to do better, or choose to deflect and make excuses, it's nothing to me. But don't come whining to me with your "erm I'm autistic" when I ask my followers if this is or isn't the same page so many people go so upset about. A "yes" or "no" is how to answer that, not an excuse. Especially not one that seeks to say that you can say whatever you want because you're autistic too. No, you can't. Neither can I. I mean you CAN but then people are going to keep talking about how much they hate you and how much of a tool you are. Your choice. I didn't reach out to you. I asked a question about you that you butted into with your stupid excuse and actually caused me to apologize to you for mistaking you for the other, bad page - you failed to point back out to me that you ARE THAT OTHER BAD PAGE - you just told me you were autistic and then left it at that. That's cool. And I'm just telling everyone about the tool that tweeted me earlier.

-----

More links will be added here:

http://thingsautismparentssay.tumblr.com/
http://timetolisten.blogspot.com/2015/08/stop-proving-me-right-more-on-year-in.html
http://adiaryofamom.com/2015/08/17/dear-amy-and-dean/

(Reading back over this post now many weeks later I see shadows of the way that Neurodivergent K writes - I am not a copycat, I'm simply absorbent. I'm like a musician whose albums sound like their recent influences - please don't take this as intentional modeling or copying or whatever. It's not. I just think that sometimes saying what one means directly is important and she definitely has that part down to a science and I love that about her writing.)

Tuesday, December 29, 2015

Don't Do This.



A loved one messaged me earlier to say they felt I was mean to them this morning because of the look on my face and tone of voice. I messaged back to say that it was unintentional, I'm sorry I made them feel that way, and took the opportunity to educate them that this is actually a fairly typical trait of people with Asperger's. This person replied to me, and I quote: "Assburgers sucks."

Now, that hurt. A lot. I'm an Aspie. (Some people don't like the word Aspie. I don't like PFL, so Aspie is my alternative. I don't want to be a person with asperger's. And I surely am not "an asperger" because Asperger is not my surname. So I am an Aspie. Please don't hold terminology against me.) I can only imagine that it might be like if a gay person's loved one told them that homosexuality sucks. Or if someone told their mother "mothers suck". Like I said, It HURT. A lot. I have to admit that despite trying really hard not to, I cried.

I'm in my 40s and wasn't diagnosed until last year and this loved one has known me most of my life, so it's not like the label defines me to them - or it shouldn't. This interaction pre-diagnosis would've ended with me telling them I didn't mean to make them think I was upset, and I was sorry, and them accepting my apology. But because the dx was thrown in there, this person took it differently (and lashed out).

Now, I'm going to stop right here. I could expand on all of this, but I don't want to go off in that direction (as warranted as it is).

I'd rather take this opportunity to point out that I'm a grown adult and having my loved one say "Assburgers sucks" [sic] to me MADE ME CRY AND RUINED MY DAY and is making me SERIOUSLY reconsider my trust and love and respect in regards to this person right now.

THIS IS WHAT PEOPLE DO TO THEIR CHILDREN WHEN THEY SAY THEY HATE THE AUTISM (BUT LOVE THE CHILD). DON'T DO THIS.

DO NOT.

Thanks.



(By the way, I responded that I wouldn't change me if I could, I like me, and It's too bad they don't. They tried to say that wasn't what they said but you know what? it IS what they said.)

Wednesday, December 16, 2015

#AutisticWishlist

It's the day for hitting up twitter with the hashtag #AutisticWishlist, generally accompanied by #BoycottAutismSpeaks .

Here's the link to the original post - https://autloveaccept.wordpress.com/2015/12/15/sample-tweets-for-autisticwishlist/

Lets get to work, shall we? I post more there than here lately. I should really try to fix that. I always have so much to say and so much passion behind it, which is tough to capture in 140 characters or less.

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.