So, it’s been a really long time since I’ve updated. I’m sorry, my fellow hedgies. My health has not been good and I’ve been struggling to deal with it.
A couple years ago I received a fibromyalgia diagnosis. I’m treating it as best I can, in the ways I know how, but it’s not easy and sadly they don’t hand out instruction manuals with diagnoses. I am in fact currently in the middle of a bit of a fibro flare, which means that despite my best efforts, I’ve been able to do very little but sleep the last few days.
It turns out I also have type 2 bipolar disorder. It really came to a head last year and I was in an extremely bad place. It didn’t help that thanks to a snafu with my psychiatrist, it was six months before I got to try a mood stabilizer. I’ve been on seroquel now for a little over half a year and I’m doing better, but it’s still difficult to navigate.
There’s quite a lot of other stuff I’ve been dealing with but getting into that will turn this post into a novel. Suffice it to say life has not been kind to me.
I have not removed Autistic Hedgehog in all this time because I’ve always hoped to be able to return to it. Submissions are open. If you wish to post a meme, just sent me the text you want and I’ll make the meme image for you. That way I can keep track easier of which ones were actually sent to me.
The inbox is now open again too but please be aware that answers to complicated questions will likely be slow in coming. I’ll do my best, but some of the questions I get are really hard to answer, and not something I can handle on bad days. And unfortunately, I do have other things I need to use my good days for. But I will try to answer at least one of any of the really big questions every week.
Believe me, I haven’t forgotten any of you. I’m still proud of being able to help people with this blog, and I’m very much still here. It’s just taken a long time to get some semblance of control over my health. It’s still in flux, but I’m going to try my best.
Hedgehogs, I need your help. Or maybe it’s more accurate to say that we need our help.
A few days ago, my husband brought to my attention that the popular skeptic blog Skepchick was planning a sister site for disabled people. This was apparently due to a kerfuffle (and from what I can tell, not the first one) over ableist language being used on the site. Excited at the prospect, I applied. Only the find out that the very first conversation in the comments went like this, verbatim:
Nancy:
Hi Sara – what about a parent of one (or more) disabled/autistic children. Can they apply?
Thanks!
Nancy
Sarah: Hi Nancy! That’s a good question– I’d say apply & we’ll figure it out from there. :)
I’m sure I don’t have to explain to any one of you why this bothered me. But I spoke up, pointing out that autistics absolutely do not care to have parents speaking for us and even linking to the blog for Autistics Speaking Day.
That post sat in the moderation queue for three days. When it finally appeared, no one responded to it. Not even Sarah, who is supposed to be running this site. I wrote another post, pointing out further why this lack of response was so upsetting. Aside from being accused of things I have not done and still having my concerns completely ignored, still I have not been properly responded to by the person who is supposed to be running the damn blog. Nothing. Not a word. As if my feelings and the feelings of autistics just don’t matter. I have, as you might imagine, withdrawn my application, because who wants to work with someone who doesn’t care enough about your feelings to respond to you?
So this blog is two things. First, it’s a warning. If this blog ever goes live, I caution you all to stay away from it. They haven’t even begun yet and already they’re showing oodles of ignorance when it comes to people with developmental and cognitive abilities and an utter lack of caring for our concerns. It very likely will not be a remotely safe or welcoming place.
The other thing is a call for help. Despite doing things like linking to Autistics Speaking Day, I’m being accused of speaking for all autistics, as if there aren’t actuallyhuge amounts of us who have very real issues with parents speaking for us. So I’m asking you, if you have the spoons, to please go there and tell them exactly how you feel about the idea:
http://skepchick.org/2014/02/disabled-write-for-us/
This warning and call for help is for every and any person with a cognitive or developmental disability, not just autistics. These people believe they have so much right to disagree with us that they can just ignore what we say.
Well, I’m tired of being ignored. I’m tired of being treated like I’m so little of a human being that my opinions don’t matter at all. Skepchick is a big enough site to do so much harm to our cause, and I refuse to sit here and let them do it.
I can’t tell you how much pain I’m in right now. I want to crawl in a hole and never stop crying. I want to sit on an island and watch the world burn. I can barely see for the tears. I’m scared, because I’m little and they’re big, and part of me knows I can’t win. But I can’t not fight, either. This blog has become too important to me. It’s helped me so much, and I know it’s helped other people. I can’t sit in silence while people who are not disabled like we are presume to make decisions for us.
Because that’s happening every day and it’s hurting so many people. Even when I’m silent, even when I can’t cope, I watch. I see the things all of you talk about, the way you’re treated, how you fight and fight and people won’t listen and this…this was a chance for the truth to be heard, from our own mouths and our own fingers, and they don’t care. So I have to speak. I have to speak for all of us who have been abused, who have been killed. I have to speak because if I don’t, there’s no way to stop this cycle.
Help me tell them to stop the cycle. Please, I’m begging you, help me tell them that solidarity is not just for neurotypical people. That we are done letting other people speak for us. Please.
Despite being a long-term intermittant lurker on Skepchick, I never made an account to comment because, honestly, commenting on blogs I’m not 100% comfortable on freaks me out. And Skepchick, sadly, is one that I’m not 100% comfortable on exactly because of their history of massive fails on disability issues, particularly DD issues.
It looks like Skepchick is now being added to my ‘unsafe blogs to visit’ list. After reading through the comments thread, I’m honestly sick to my stomach at the blatant neuro-ableism, gaslighting, disrespect, unchecked privilege, willful ignorance, and dismissivenes displayed by Skepchick bloggers and commenters (particularly Sarah and Will) towards autistic people.
To those of you with the spoons to keep trying to get through to these people, I wish you all the best and will be silently cheering you on. Sadly, given what I’ve seen displayed in that comments thread and Skepchick’s previous history, I can’t say that I’m confident about your chances (but I’m still your silent cheer squad!)
And in closing: neurotypical privilege is being allowed and encouraged to speak over neuroatypical people despite a policy of ‘outsiders’ not being allowed to speak for minorities that they’re not part of.
No kidding. I don’t blame you for not wanting to get involved. The Almighty herself has shown up to tell me how “awful” and “ignorant” I am, for “assuming” they would treat developmentally disabled people poorly. Except that’s exactly what they were and are doing, so there you have it.
Like people are straight up telling me they have a history of this behavior and I’ve seen nothing to indicate that isn’t true, and have been in fact treated horribly, and then I get treated even more horribly.
Rebecca Watson, ladies and gentlemen. The fucking anti-developmental disabilities Richard Dawkins. The universe loves her irony a bit too much, methinks.
Oh hey so I was the person who initially called out their ableism. Which was really really bad, as was their able tears all over the place reaction. It wasn’t a “kerfuffle”. It was SKEPCHICK DONE FUCKED UP.
I wrote a thing about it, but it’s fairly vague bc I am still so triggered.
http://timetolisten.blogspot.com/2014/02/skepticisms-ableism-problem-again.html
But yeah, they’re looking for their Token Disabled Friend. And they’re being just horrendous and any self respecting disabled person would not want anything to do with it, it’d be being a token.
I just…my jaw is on the floor right now. Are you seriously telling me that it was an autistic person who called them out in the first place and that their “solution” to the problem…involved ignoring and gaslighting another autistic person? For reals? I mean, clearly it did, but holy shit, the cognitive dissonance is staggering right now.
I am so sorry you went through that. So, so sorry. I know from my own experience just how vicious and abusive they are, and it is awful, and I’m not surprised you’re still triggered. I’ve cried to the point of dehydration today.
People, you should read sherlocksflatafflect’s post there, definitely. Because holy shit, holy shit.
Meanwhile, Rebecca Watson is being a bully who refuses to allow any comments that don’t agree with her.
Is this the same Skepchick who was part of the whole Elevatorgate kerfuffle? I really felt for her when people were taking her simple statement out of context and making her out to be some raving banshee! The fact that this lady turns out to be a neurotypicalistic asstwit is very disheartening, indeed!
That would be her, yes. She and everyone working for her site are apparently neurotypicalistic asstwits, since they chased their one openly autistic writer off the site for standing up for our community over this.
I don’t, I’m sorry.
K (sherlocksflataffect) probably knows more.
I don’t, I’m sorry.
K (sherlocksflataffect) probably knows more.
Hedgehogs, I need your help. Or maybe it’s more accurate to say that we need our help.
A few days ago, my husband brought to my attention that the popular skeptic blog Skepchick was planning a sister site for disabled people. This…
OH BREAKING NEWS.
The ONE openly Autistic contributor to any of the Skepchick sites, the ONE person who had any connections to actual disability activists?
They just booted him for “undermining” (read as: stating concerns FROM THE COMMUNITY) this project. And apparently for sharing private conversations, though they have a weird definition of private.
This is not ok. Just so we know.
Gosh, this sounds so familiar. It’s almost like that time Richard Dawkins got Rebecca Watson tossed out of speaking at the Reason Rally because he’s a giant privileged bully who refuses to admit he was wrong.
I woke up dizzy this morning and it’s not going away, so this is all I really have the spoons to say on the moment. But I’m not done. I won’t be silenced.
I mean really. I’m ”beyond the pale” for suggesting they don’t care about ableism? Ha! I’m not the one censoring and booting actual disabled people trying to speak for themselves.
Double dare you to email this or similar comparison to her. *hi I am so over them can you tell?*
Pssh, email, nothing. I’m planning an open letter. It’ll take some doing to put together and it will be seriously triggering, but my husband has promised to support me through it. She might be able to silence me on her blog, but she can’t silence me on mine.
Hedgehogs, I need your help. Or maybe it’s more accurate to say that we need our help.
A few days ago, my husband brought to my attention that the popular skeptic blog Skepchick was planning a sister site for disabled people. This…
OH BREAKING NEWS.
The ONE openly Autistic contributor to any of the Skepchick sites, the ONE person who had any connections to actual disability activists?
They just booted him for “undermining” (read as: stating concerns FROM THE COMMUNITY) this project. And apparently for sharing private conversations, though they have a weird definition of private.
This is not ok. Just so we know.
Gosh, this sounds so familiar. It’s almost like that time Richard Dawkins got Rebecca Watson tossed out of speaking at the Reason Rally because he’s a giant privileged bully who refuses to admit he was wrong.
I woke up dizzy this morning and it’s not going away, so this is all I really have the spoons to say on the moment. But I’m not done. I won’t be silenced.
I mean really. I’m "beyond the pale" for suggesting they don’t care about ableism? Ha! I’m not the one censoring and booting actual disabled people trying to speak for themselves.
Hedgehogs, I need your help. Or maybe it’s more accurate to say that we need our help.
A few days ago, my husband brought to my attention that the popular skeptic blog Skepchick was planning a sister site…
On the upside, Will finally came out with some cognitively-accessible language answers: No, parent bloggers will not be a thing. I had to resist the urge to write “Was that so fucking hard?!” I did write “this is how you do cognitively-accessible language for me”
I’m not keen on how Will is lumping autistichedgehog and her husband together as a single entity in posts, though, and I might’ve monologed a bit on why the posts were not cognitively accessible to me. Posting while atopy flare and sick and headachy = monolog filter not operational. Whatever, I think they needed a rundown of why, no, our concerns had not been answered until someone came out with an explicit answer.
Also: snarling at autistic people for having trouble with subtext and implication? Not on. Don’t tell me to “re-read” ad infinitum, clarify.
Also, yes, I am PO’d. So PO’d I made a tumblr while migraine auraing and asthma flaring and assorted other histamine fun times-ing. When adrenaline leaves, I will crash hard and probably need a pillow fort day. My posts in the thread are very academic b/c that’s kind of my defense mechanism when I feel threatened/anxious/angry. More nervous/threatened/angry I feel in an unsafe space, more distant/obtuse my language gets. Frankly, I’m surprised I didn’t start breaking out the hexa- and heptasyllabic words in my vocabulary.
Ye-ah, way, way too little, and way too fucking late.
Chemgeek, this was not you having a cognitive problem. You didn’t read anything wrong at all. The specific question that was asked was literally if parents of disabled/autistic children could apply. And the answer given was literally that they could and would be taken under consideration.
Sarah tried to make up some bull about “what if a sixteen-year-old who can’t write well wants to apply”, but that was bull. She was not talking about any form of assisted communication, even if that’s what she’s trying to claim now. At no point did she or any other Skepchick staff member say “Parents can help their children apply but cannot apply themselves.” Again, the question the answered was not “Can parents of disabled/autistic children help their children apply?” it was “Can parents of disabled/autistic children apply?”
They said yes to that. And when people protested and explained why they had a problem with this, they made no attempt to engage. There was not anything to remotely demonstrate that it was a misunderstanding that needed to be cleared up. In fact, it was largely ignored, until they decided to attack me.
Then suddenly I was being told I was “repeatedly demanding an answer” when in fact at that point I had posted what, once? With a polite suggestion to look at the Autistics Speaking Day blog to see why their stance on this matter was problematic. Rebecca Watson herself showed up to call me awful and ignorant and reactionary and a few other things, too, before straight up censoring me and my husband.
In a sense, Will’s clarification now is just more of the same gaslighting that was already occurring. He’s trying to make it look like that’s what they were saying all along, but it most emphatically was not, because they never once said it. And in point of fact, he and more than one person claimed they weren’t responding because of some bullshit about “not wanting to disagree with marginalized people because it might marginalize them further.” But if they didn’t think it was okay to allow parents to blog on behalf of their children, why the word disagree? I said “Parents should not be allowed to apply.” They said “We’re not responding because blah blah blah disagreeing with marginalized people."
They said they disagree with me about parents not being allowed to apply. Never did they say parents wouldn’t be allowed to blog on their children’s behalf. And any child applying with their parent’s assistance would be applying for themselves. Thus the parent would not be applying. So if Sarah had said "Parents can help their children apply but not apply for themselves” that would be one thing. But that’s not what she said, that’s not what any of them said, and no matter how they try to claim it, that’s not what their subtext and implications said, either.
I write for a living. I am damn good at subtext and implications, especially when it comes to allistic people, because it’s the only way to protect myself from them. Chemgeek, do not let them convince you that you were the one who misunderstood, because you understood just fine. Right now they’re trying to cover their asses. Just like they’re claiming it was all a “little kerfuffle” over the word st*pid when the evidence shows it wasn’t, they’re trying to minimize what happened here. They’re trying to make it look like they weren’t horribly abusive and viciously ableist to disabled people.
But they were.They are 100% in the wrong here and you misunderstood nothing. It’s all there in black and white, and they’ve damned themselves with what they’ve said as much as with that they didn’t. They think that now they’ve bothered to answer, after all the abuse they heaped on me, that they did the right thing and get to have ally cookies now. But they sure as fuck aren’t getting them from me.
Hedgehogs, I need your help. Or maybe it’s more accurate to say that we need our help.
A few days ago, my husband brought to my attention that the popular skeptic blog Skepchick was planning a sister site for disabled people. This was apparently due to a kerfuffle (and from what I can tell, not the first one) over ableist language being used on the site. Excited at the prospect, I applied. Only the find out that the very first conversation in the comments went like this, verbatim:
Nancy:
Hi Sara – what about a parent of one (or more) disabled/autistic children. Can they apply?
Thanks!
Nancy
Sarah: Hi Nancy! That’s a good question– I’d say apply & we’ll figure it out from there. :)
I’m sure I don’t have to explain to any one of you why this bothered me. But I spoke up, pointing out that autistics absolutely do not care to have parents speaking for us and even linking to the blog for Autistics Speaking Day.
That post sat in the moderation queue for three days. When it finally appeared, no one responded to it. Not even Sarah, who is supposed to be running this site. I wrote another post, pointing out further why this lack of response was so upsetting. Aside from being accused of things I have not done and still having my concerns completely ignored, still I have not been properly responded to by the person who is supposed to be running the damn blog. Nothing. Not a word. As if my feelings and the feelings of autistics just don’t matter. I have, as you might imagine, withdrawn my application, because who wants to work with someone who doesn’t care enough about your feelings to respond to you?
So this blog is two things. First, it’s a warning. If this blog ever goes live, I caution you all to stay away from it. They haven’t even begun yet and already they’re showing oodles of ignorance when it comes to people with developmental and cognitive abilities and an utter lack of caring for our concerns. It very likely will not be a remotely safe or welcoming place.
The other thing is a call for help. Despite doing things like linking to Autistics Speaking Day, I’m being accused of speaking for all autistics, as if there aren’t actuallyhuge amounts of us who have very real issues with parents speaking for us. So I’m asking you, if you have the spoons, to please go there and tell them exactly how you feel about the idea:
http://skepchick.org/2014/02/disabled-write-for-us/
This warning and call for help is for every and any person with a cognitive or developmental disability, not just autistics. These people believe they have so much right to disagree with us that they can just ignore what we say.
Well, I’m tired of being ignored. I’m tired of being treated like I’m so little of a human being that my opinions don’t matter at all. Skepchick is a big enough site to do so much harm to our cause, and I refuse to sit here and let them do it.
I can’t tell you how much pain I’m in right now. I want to crawl in a hole and never stop crying. I want to sit on an island and watch the world burn. I can barely see for the tears. I’m scared, because I’m little and they’re big, and part of me knows I can’t win. But I can’t not fight, either. This blog has become too important to me. It’s helped me so much, and I know it’s helped other people. I can’t sit in silence while people who are not disabled like we are presume to make decisions for us.
Because that’s happening every day and it’s hurting so many people. Even when I’m silent, even when I can’t cope, I watch. I see the things all of you talk about, the way you’re treated, how you fight and fight and people won’t listen and this…this was a chance for the truth to be heard, from our own mouths and our own fingers, and they don’t care. So I have to speak. I have to speak for all of us who have been abused, who have been killed. I have to speak because if I don’t, there’s no way to stop this cycle.
Help me tell them to stop the cycle. Please, I’m begging you, help me tell them that solidarity is not just for neurotypical people. That we are done letting other people speak for us. Please.
Despite being a long-term intermittant lurker on Skepchick, I never made an account to comment because, honestly, commenting on blogs I’m not 100% comfortable on freaks me out. And Skepchick, sadly, is one that I’m not 100% comfortable on exactly because of their history of massive fails on disability issues, particularly DD issues.
It looks like Skepchick is now being added to my ‘unsafe blogs to visit’ list. After reading through the comments thread, I’m honestly sick to my stomach at the blatant neuro-ableism, gaslighting, disrespect, unchecked privilege, willful ignorance, and dismissivenes displayed by Skepchick bloggers and commenters (particularly Sarah and Will) towards autistic people.
To those of you with the spoons to keep trying to get through to these people, I wish you all the best and will be silently cheering you on. Sadly, given what I’ve seen displayed in that comments thread and Skepchick’s previous history, I can’t say that I’m confident about your chances (but I’m still your silent cheer squad!)
And in closing: neurotypical privilege is being allowed and encouraged to speak over neuroatypical people despite a policy of ‘outsiders’ not being allowed to speak for minorities that they’re not part of.
No kidding. I don’t blame you for not wanting to get involved. The Almighty herself has shown up to tell me how “awful” and “ignorant” I am, for “assuming” they would treat developmentally disabled people poorly. Except that’s exactly what they were and are doing, so there you have it.
Like people are straight up telling me they have a history of this behavior and I’ve seen nothing to indicate that isn’t true, and have been in fact treated horribly, and then I get treated even more horribly.
Rebecca Watson, ladies and gentlemen. The fucking anti-developmental disabilities Richard Dawkins. The universe loves her irony a bit too much, methinks.
Oh hey so I was the person who initially called out their ableism. Which was really really bad, as was their able tears all over the place reaction. It wasn’t a “kerfuffle”. It was SKEPCHICK DONE FUCKED UP.
I wrote a thing about it, but it’s fairly vague bc I am still so triggered.
http://timetolisten.blogspot.com/2014/02/skepticisms-ableism-problem-again.html
But yeah, they’re looking for their Token Disabled Friend. And they’re being just horrendous and any self respecting disabled person would not want anything to do with it, it’d be being a token.
I just…my jaw is on the floor right now. Are you seriously telling me that it was an autistic person who called them out in the first place and that their “solution” to the problem…involved ignoring and gaslighting another autistic person? For reals? I mean, clearly it did, but holy shit, the cognitive dissonance is staggering right now.
I am so sorry you went through that. So, so sorry. I know from my own experience just how vicious and abusive they are, and it is awful, and I’m not surprised you’re still triggered. I’ve cried to the point of dehydration today.
People, you should read sherlocksflatafflect’s post there, definitely. Because holy shit, holy shit.
Meanwhile, Rebecca Watson is being a bully who refuses to allow any comments that don’t agree with her.
Hedgehogs, I need your help. Or maybe it’s more accurate to say that we need our help.
A few days ago, my husband brought to my attention that the popular skeptic blog Skepchick was planning a sister site for disabled people. This was apparently due to a kerfuffle (and from what I can tell, not the first one) over ableist language being used on the site. Excited at the prospect, I applied. Only the find out that the very first conversation in the comments went like this, verbatim:
Nancy:
Hi Sara – what about a parent of one (or more) disabled/autistic children. Can they apply?
Thanks!
Nancy
Sarah: Hi Nancy! That’s a good question– I’d say apply & we’ll figure it out from there. :)
I’m sure I don’t have to explain to any one of you why this bothered me. But I spoke up, pointing out that autistics absolutely do not care to have parents speaking for us and even linking to the blog for Autistics Speaking Day.
That post sat in the moderation queue for three days. When it finally appeared, no one responded to it. Not even Sarah, who is supposed to be running this site. I wrote another post, pointing out further why this lack of response was so upsetting. Aside from being accused of things I have not done and still having my concerns completely ignored, still I have not been properly responded to by the person who is supposed to be running the damn blog. Nothing. Not a word. As if my feelings and the feelings of autistics just don’t matter. I have, as you might imagine, withdrawn my application, because who wants to work with someone who doesn’t care enough about your feelings to respond to you?
So this blog is two things. First, it’s a warning. If this blog ever goes live, I caution you all to stay away from it. They haven’t even begun yet and already they’re showing oodles of ignorance when it comes to people with developmental and cognitive abilities and an utter lack of caring for our concerns. It very likely will not be a remotely safe or welcoming place.
The other thing is a call for help. Despite doing things like linking to Autistics Speaking Day, I’m being accused of speaking for all autistics, as if there aren’t actuallyhuge amounts of us who have very real issues with parents speaking for us. So I’m asking you, if you have the spoons, to please go there and tell them exactly how you feel about the idea:
http://skepchick.org/2014/02/disabled-write-for-us/
This warning and call for help is for every and any person with a cognitive or developmental disability, not just autistics. These people believe they have so much right to disagree with us that they can just ignore what we say.
Well, I’m tired of being ignored. I’m tired of being treated like I’m so little of a human being that my opinions don’t matter at all. Skepchick is a big enough site to do so much harm to our cause, and I refuse to sit here and let them do it.
I can’t tell you how much pain I’m in right now. I want to crawl in a hole and never stop crying. I want to sit on an island and watch the world burn. I can barely see for the tears. I’m scared, because I’m little and they’re big, and part of me knows I can’t win. But I can’t not fight, either. This blog has become too important to me. It’s helped me so much, and I know it’s helped other people. I can’t sit in silence while people who are not disabled like we are presume to make decisions for us.
Because that’s happening every day and it’s hurting so many people. Even when I’m silent, even when I can’t cope, I watch. I see the things all of you talk about, the way you’re treated, how you fight and fight and people won’t listen and this…this was a chance for the truth to be heard, from our own mouths and our own fingers, and they don’t care. So I have to speak. I have to speak for all of us who have been abused, who have been killed. I have to speak because if I don’t, there’s no way to stop this cycle.
Help me tell them to stop the cycle. Please, I’m begging you, help me tell them that solidarity is not just for neurotypical people. That we are done letting other people speak for us. Please.
Despite being a long-term intermittant lurker on Skepchick, I never made an account to comment because, honestly, commenting on blogs I’m not 100% comfortable on freaks me out. And Skepchick, sadly, is one that I’m not 100% comfortable on exactly because of their history of massive fails on disability issues, particularly DD issues.
It looks like Skepchick is now being added to my ‘unsafe blogs to visit’ list. After reading through the comments thread, I’m honestly sick to my stomach at the blatant neuro-ableism, gaslighting, disrespect, unchecked privilege, willful ignorance, and dismissivenes displayed by Skepchick bloggers and commenters (particularly Sarah and Will) towards autistic people.
To those of you with the spoons to keep trying to get through to these people, I wish you all the best and will be silently cheering you on. Sadly, given what I’ve seen displayed in that comments thread and Skepchick’s previous history, I can’t say that I’m confident about your chances (but I’m still your silent cheer squad!)
And in closing: neurotypical privilege is being allowed and encouraged to speak over neuroatypical people despite a policy of ‘outsiders’ not being allowed to speak for minorities that they’re not part of.
No kidding. I don’t blame you for not wanting to get involved. The Almighty herself has shown up to tell me how “awful” and “ignorant” I am, for “assuming” they would treat developmentally disabled people poorly. Except that’s exactly what they were and are doing, so there you have it.
Like people are straight up telling me they have a history of this behavior and I’ve seen nothing to indicate that isn’t true, and have been in fact treated horribly, and then I get treated even more horribly.
Rebecca Watson, ladies and gentlemen. The fucking anti-developmental disabilities Richard Dawkins. The universe loves her irony a bit too much, methinks.
I’m curious–as much as getting parents of autistic children to write in lieu of actually autistic people, they haven’t actually done anything wrong yet (they said to apply/think about it). I agree that disabled people need to get a voice in media, but wouldn’t it be good to ask people to apply to become a blogger, rather than just shut down the idea entirely? (sorry if I misunderstood your post)
————-
The blog is meant to be for and written by people with disabilities, and right in the FAQ they say that people without disabilities shouldn’t apply. Then the very first thing they do is turn around and agree to consider people without disabilities, in spite of myself (someone with the disability in question) and several others pointing out that we’re not comfortable with that.
I explained in my own response why I didn’t think parents should be considered, and linked to the blog for Autistics Speaking Day to show that we can and do speak for ourselves just fine. That was never acknowledged. Not at all. By anyone.
And if you read the comments, other people point out that this is not the first issue the site has had with regards to cognitive and developmental disabilities. I’ve seen mention that people speaking out against ableist language were simply dismissed as trolls, in fact. That’s not exactly a good track record, and the fact that no one will acknowledge concerns about this just makes it worse.
As well, they have a parenting blog already. If parents of autistics/disabled children have something to say, there is already a place for that. This was supposed to be a blog for disabled people, a place for us. To say people who aren’t disabled weren’t allowed, then immediately turn around and start considered exceptions, is not cool. Especially since it speaks of the sort of ignorance that people tend to have about autistics, that we can’t speak for ourselves. There are enough of us who can and do, who might be willing to apply, that there’s just no need for parents to even be a consideration at all.
Hedgehogs, I need your help. Or maybe it’s more accurate to say that we need our help.
A few days ago, my husband brought to my attention that the popular skeptic blog Skepchick was planning a sister site for disabled people. This was apparently due to a kerfuffle (and from what I can tell, not the first one) over ableist language being used on the site. Excited at the prospect, I applied. Only the find out that the very first conversation in the comments went like this, verbatim:
Nancy:
Hi Sara – what about a parent of one (or more) disabled/autistic children. Can they apply?
Thanks!
Nancy
Sarah: Hi Nancy! That’s a good question– I’d say apply & we’ll figure it out from there. :)
I’m sure I don’t have to explain to any one of you why this bothered me. But I spoke up, pointing out that autistics absolutely do not care to have parents speaking for us and even linking to the blog for Autistics Speaking Day.
That post sat in the moderation queue for three days. When it finally appeared, no one responded to it. Not even Sarah, who is supposed to be running this site. I wrote another post, pointing out further why this lack of response was so upsetting. Aside from being accused of things I have not done and still having my concerns completely ignored, still I have not been properly responded to by the person who is supposed to be running the damn blog. Nothing. Not a word. As if my feelings and the feelings of autistics just don’t matter. I have, as you might imagine, withdrawn my application, because who wants to work with someone who doesn’t care enough about your feelings to respond to you?
So this blog is two things. First, it’s a warning. If this blog ever goes live, I caution you all to stay away from it. They haven’t even begun yet and already they’re showing oodles of ignorance when it comes to people with developmental and cognitive abilities and an utter lack of caring for our concerns. It very likely will not be a remotely safe or welcoming place.
The other thing is a call for help. Despite doing things like linking to Autistics Speaking Day, I’m being accused of speaking for all autistics, as if there aren't actuallyhuge amounts of us who have very real issues with parents speaking for us. So I’m asking you, if you have the spoons, to please go there and tell them exactly how you feel about the idea:
http://skepchick.org/2014/02/disabled-write-for-us/
This warning and call for help is for every and any person with a cognitive or developmental disability, not just autistics. These people believe they have so much right to disagree with us that they can just ignore what we say.
Well, I’m tired of being ignored. I’m tired of being treated like I’m so little of a human being that my opinions don’t matter at all. Skepchick is a big enough site to do so much harm to our cause, and I refuse to sit here and let them do it.
I can’t tell you how much pain I’m in right now. I want to crawl in a hole and never stop crying. I want to sit on an island and watch the world burn. I can barely see for the tears. I’m scared, because I’m little and they’re big, and part of me knows I can’t win. But I can’t not fight, either. This blog has become too important to me. It’s helped me so much, and I know it’s helped other people. I can’t sit in silence while people who are not disabled like we are presume to make decisions for us.
Because that’s happening every day and it’s hurting so many people. Even when I’m silent, even when I can’t cope, I watch. I see the things all of you talk about, the way you’re treated, how you fight and fight and people won’t listen and this…this was a chance for the truth to be heard, from our own mouths and our own fingers, and they don’t care. So I have to speak. I have to speak for all of us who have been abused, who have been killed. I have to speak because if I don’t, there’s no way to stop this cycle.
Help me tell them to stop the cycle. Please, I’m begging you, help me tell them that solidarity is not just for neurotypical people. That we are done letting other people speak for us. Please.
You may have noticed that I’ve answered a few questions today. Something that I said I was going to do quite a while ago. Well, I certainly thought I was going to.
The first two months of 2014 had other ideas. Very shortly after I started feeling better in December, I got worse again. I started having a great deal of back pain, which brought along depression and sleep deprivation. It was a pretty vicious cycle. The back pain causes both more depression and more sleep deprivation, the sleep deprivation caused more back pain, etc. etc.
Last month the sleep deprivation got really bad. We got a new pillow for me and that aspect, at least, is mostly sorted. I’m almost feeling human, but I’m still dealing with a lot of pain in my back and neck. We’ve tried every trick in the book, just about, and it won’t go away. I’m hoping my visit with the chiropractor tomorrow helps.
I will be answering questions as I can, but I don’t think it’s fair to promise any sort of consistency right now. I just have no idea what the year is going to throw at me next. It might be I’ll be fine, but there’s just no way of knowing. But AH is not dead. I know a lot of blogs of this sort have gone away or gotten very inactive, and I know we need a place where it’s safe for us to be prickly, and I’ll make AH that place for as long as I can.
We vary in this a lot, I think. Some do exactly that. Some are more narrow and focused in their interests. Some, like me, are all over the place.
I tend to have longer term interests, and what I call “fixations.” Fixations are pretty much what they sound like: Things I get fixated on. Unlike with special interests, I don’t necessarily try to learn a lot about my current fixation (especially since it can be almost anything, including a color). I just get stuck on it for a while. Which is how I’ve acquired things like a panda plushie and an owl pendant.
Other people will obsess over something else until they learn everything there is to know about it, and then move on. There’s no one true autistic way with this kind of thing.
No. I was diagnosed at nine. There are other people here who were diagnosed in their teens, twenties, thirties, forties. It happens a lot, and is most common for girls and women.
Unfortunately, I was diagnosed in the mid-90s, and it sounds like things have changed a lot since then, so I personally can’t really help.
Any other Hedgies have some information on this?
I’m not sure it’s precisely the same from person to person, but I do think it may be somewhat similar, at least.
For me (since I can only speak for myself; if other Hedgies want to talk about their own experiences with it, please do) I know what I want to say. The words are in my head just fine, but they will not come out of my mouth. They just won’t. At my last blood test, I managed to croak out the word “crochet” (they were considering if they could take the blood from my fingers instead, so I pointed to my left hand, and eventually got that one word out, which my husband at least understood) and I’m almost never able to do that. Of course, what was actually going through my head was “Please use my left hand, since I need my right hand more for practicing my crochet” but that just would not come out.
It might not express itself in quite that way for you, though.
What I do find interesting is that you mention trouble regulating volume, which is a common issue for autistics. I actually have pretty good control with that sort of thing and yet there are still times when it happens.
If this diagnosis is important to you, don’t let your psychiatrist dismiss it. They are not you. It’s easy for them to say, from the outside, that you don’t have too much trouble, but that’s for you to say, not them. After all, they only see you once in a while. You live in your head all the time.
I don’t see why not. Stimming seems to vary greatly from autistic to autistic. Most autistics I know talk about happy flapping, for example, but I almost never flap when happy. Usually it comes with nerves (though I’ve recently discovered that abject horror will make me flap too. I never knew that until I watched Once Upon a Time).
That your stims are related to the intensity of your mood rather than which mood is just your variation of something we all experience.
If you really relate to a lot of things here, and you’re really wondering, there’s nothing wrong with that. It is a good thing to research as much as you can, especially if you want to bring it up with your parents and/or psychiatrist.
If you do have some hypochondria, then it’s good if you have a firm grasp on why you feel this way before you bring it up. Don’t be afraid to write down the things you relate to before you talk to anyone about it, so you don’t forget what you want to say if you get flustered. I imagine with hypochondria, you could easily face people being dismissive of you about this, so organization is important. Do your best to make sure they understand you did a lot more than just glance at a list of symptoms.
Unfortunately, no matter who you are, an autism diagnosis is a subject that it can be very hard to get into with a lot of parents and psychiatrists. There’s a lot of ignorance about what autism even is. If they point out that you’re already sixteen, let them know that a lot of people are still diagnosed quite late in life. If they think autistic people aren’t capable of speaking, point out that autism is a spectrum with many different symptoms, and mutism is only one of them that not all of us have. Your best shot is to know as much as you can.
Even if they won’t listen, if you feel strongly about this, that’s okay. We will listen. There’s always support to be found here and AH and in the community in general.
I am still here. Still alive. I’ve just been struggling with depression a lot lately.
For a little while it seemed like I might be able to go off my depression meds. They weren’t helping that much and I thought maybe if I treated the fibro, that would be enough. Only the medicine change to treat the fibro didn’t work, and then I went off my depression meds, too. I kept trying to fight my low mood, because I didn’t want to accept that I needed to go back on meds. I’ve been on medication my entire life, literally, and I get so tired of it always hanging over me. The problems and the side effects and all of that.
Then something happened at the beginning of the week that sent me into a meltdown and I had no choice but to accept it. I’m on a new medication now, one that’s supposed to treat both fibro and depression, and I’m stabilizing somewhat.
I hope to get back to AH next week. For the weekend I’ll be closing the inbox, and reopening once I get it cleared out. As well, I have an idea for April this year, that I’ll be sharing soon, so stay tuned.
Please vote for the Autistic Self Advocacy Network to get a huge donation from the Project for Awesome!
I guess you could say spoons are a unit of measurement, and what they measure is the ability to cope with the shit your day throws at you. When you’re out of spoons, you’re also out of coping ability. I have no idea where the term originated, however, and never used it until I heard it from my husband (who is a lot more up on memetics than I am).
Here is a response to a very similar question I received around the same time.
Here is a list of criteria put together by someone who is actually autistic, rather than some unfortunate “expert” with a lot of misconceptions. Just a few things I’d like to point out for you to keep in mind while reading:
1. Teenagers or adults with undiagnosed autism are the proverbial babies that are taught to swim by just pitching them into the water. Many develop a number of coping mechanisms to deal with their autism symptoms and even overcome a few altogether. That an individual may have done so does not disqualify them from being autistic.
2. Some of these things can be very hard to identify from within. It may take a lot of time and thought to see if this criteria applies to you, because it can be so difficult to notice things you yourself do. As well, some of these are things (like differences in sensory perception) that one may not have had much reason to realize is different in themselves from what it is in others. I never knew I was synesthetic until a few years ago, because I always assumed everyone else processed the world synesthetically too.
3. It’s my firm belief that the underdiagnosis of DFAB girls is due in part to socialization. Two (erroneously) common “traits” of autism are a lack of empathy/emotion and less desire to socialize. However, any child identified by others as a girl will be encouraged, from a very young age, towards pursuits and hobbies that surround empathy and socialization (where as a child identified as a boy will not be, or will be encouraged towards these things to a much lesser degree). They will be expected to be more emotional and social, as well as to be less energetic and rowdy than, DMAB boys, thanks to sexism and cissexism. So when dealing with someone who either identifies as female or especially who was identified as female from birth, keep in mind that some of these traits may have been greatly lessened or forced out by how the person in question was raised. That doesn’t mean that the individual doesn’t necessarily have them, but may have been forced to have them “under control” so they don’t show nearly as strongly as they otherwise might.
Oy vey.
Many autistic people aren’t in the least bit antisocial. A lot of us aren’t even all that introverted, but can be driven to both introvertedness and antisocialness by the way society treats us. Being social doesn’t even begin to disqualify you from being autistic, and I’m sure I can find other autistic people right here on tumblr who’ll agree with that, if you think a wake up call might work on your mother.
Otherwise, often the best way to look into diagnosis is to get a referral from your GP or bring it up with your psychiatrist if you already have one. It can be difficult, because there are a lot of misguided notions out there like the ones your mother expressed. In the end, it’s about whether it’s worth it to you. If you feel it would make a difference for you, you should pursue it regardless of what your mother thinks. She’s not the one who struggles with eye contact or has meltdowns, after all.
Honestly? This is about you, not her. Unless her anger is very uncomfortable or dangerous to you, worry more about your feelings, rather than hers. If you have to, ask for your dad’s help, since it sounds like he might understand. Your mother may not even need to know about it.
If it is important that you talk to her about it, then there’s something to keep in mind: Modern rhetoric is on autism is still very parent-blaming. The days of the “refrigerator mother” might be largely over, but all these things science keeps thinking might be “causing” autism feels like blaming, too. Too old, too young, where you live, what you eat, how much money you have…these are all correlations, but they’re often put out there by journalists as causations, and that’s wrong.
Unfortunately, it also gives the impression that in some way, if a parent had just done something differently, their kid wouldn’t have autism. In truth, these things are likely just coincidences, but no one tells parents that. So many parents, consciously or subconsciously, end up with the feeling that if their child is autistic, it would be their own fault. Organizations like Autism Speaks don’t help them get through that feeling.
That is most likely what you’re up against, or at least part of it. It’s terribly unfortunate, and terribly common, for resistance to diagnoses of neurodivergence to come from this feeling, for parents. And your mother needs to understand that this is in no way about her. It’s about you. It’s about how you feel and what’s right for you. Do you feel like there’s something “wrong” with you, or do you simply see that you have differences, and want a name for that?
Think about what you want to say and how you want to say it. What this means to you. As I’ve advised before, write it down if you need to. If that doesn’t work, you may have to be more underhanded about it, but again, ultimately, this is about you, not her.
No, I haven’t. I don’t tend to read a lot of non-fiction about autism. I got a fair bit thrown at me when I was younger, and I’ve been diagnosed since I was 9 so like…sometimes I feel like a walking Complete Guide to Asperger’s Syndrome, if that makes sense.
I do think I’ve seen some complaints about Attwood in the autism community here. Or maybe I’m thinking of someone else. Hedgies?
Autism fluctuates, I’ve noticed. Some things get better, some get worse; none of them necessarily stay that way.
I’ve gotten much, much more twitchy and upset in crowds over the years. On the other hand, you know that thing where a change in our routine—even a small one—can completely ruin our day? Happens to me almost never anymore. Used to be if my breakfast went wrong, I couldn’t go to school that day. Now when something changes, I can almost always handle it.
So don’t worry about being “less” autistic, because autism simply doesn’t work that way. All that’s happened is you’ve gained more spoons to cope with those things, and that’s good.
Hey, these spikes aren’t for show, you know. He’s not going to find it that easy to poke me with that staff of his.
I know that. My point was simply that we know the different ways autism can look in adults, that it can even look so little like autism on first glance that it slips past, and we have actually known this for a very long time, so there really is no good reason to not have more experts on autism in adults.
I was actually thinking back to an article I read something like ten years ago (when you’re young, and you’re autistic, and people know you’re autistic, they will inevitably inundate you with articles). It was about adults exactly like that, people in their 30s, 40s, even their 50s, who got by for a long time without an autism diagnosis simply because they could pass enough. And about how experts were starting to recognize the signs of that. And yet somehow, adult autism experts are rarer than hens teeth.
That there are other problems with obtaining autism diagnoses is a given, but that the “You can speak/hold a job/show emotions/etc. so you can’t have autism” ignorance is still so prevalent, when we’ve known for more than a decade that autistic people can do those things, boggles my mind.
The first thing to do is try asking your GP for a new referral. Explain that the psychiatrist she referred you to refused to even talk to you about it. It may take some time to get the referral, but she ought to be willing and able to do it. There’s a big difference between someone saying you don’t have autism and someone refusing to even discuss it, so in this case, you didn’t actually remotely get what you went to the psychiatrist for.
It might help to do some research and see if you can find any autism specialists in your area that your GP can refer you to. Whatever else, and I know this is hard, but try to be firm and clear with your GP so that she understands exactly what the problem is. If you need to, write down what you want to say beforehand, just in case your brain does the Autism Nope on you. I’ve walked out of a lot of doctors’ offices without saying what I wanted to because of that.
Start there, and see what happens.
Not necessarily. We talk about meltdowns more frequently here, but shutdowns happen too, and are basically what you’ve described. A lot of us have some at least occasionally, and there are those of us more prone to shutdowns than meltdowns.
It’s really down to how each individual autistic copes with sensory input, and definitely doesn’t rule out an autism diagnosis.
Word.
Hi Nicky,
I always find these ones a bit sticky, because it’s hard to tell if these is an autism problem, a male privilege problem, or a little bit of both. Even when we sometimes miss cues and don’t understand why something hurt someone, most of us can understand once it’s explained. That they won’t stop makes me suspect it runs deeper than just the autism.
Regardless of what’s causing it, it’s not okay. It’s hard to know what exactly might work without knowing them for myself, but do you ever just get angry with them? Yell at them or stop talking to them altogether? If the autism is playing a part in this at all, then one thing you’ll find with a lot of us is that actions speak louder than words. Let them see how upset you are. Has anyone ever told you that you shouldn’t be firm or even angry with them simply because they’re autistic? Because that’s wrong. We can do bad things too, and autism is not a get out of jerk free card.
Again, it’s hard to give advice in situations like these because I don’t have a little information, and I’m sorry I can’t help more. But whatever else you do, don’t let them push you around because they have autism.
Okay, I’ll try to answer more questions tomorrow, in between PT and crocheting practice. Right now, I really need to be in bed. Like, an hour ago.
Sadly, he’s been very busy, protecting the Nine Realms and moping over his human girlfriend, and hasn’t been able to keep our date. Honestly, I’m thinking of spending some time with that brother of his. Can you believe the poor guy has been locked in prison for months? I’m disappointed in Thor. I expected more of him.
Yes, it does indeed seem that way. What saddens me the most is how few specialists in ASD there are for adults. Autism is not new, not in the least. Not only that, but almost 20 years ago when I was diagnosed, they were already finding a lot of autistic adults who’d fallen through the cracks because they passed well enough. None of this is new information and it should be something there are competent therapists and psychiatrists for. That there isn’t distresses me deeply.
I’ve gotten a bunch of these in my inbox tonight. I am so, so sorry that so many people go through this crap. I mean, I experienced something similar when I made an attempt to move to an adult psychiatrist when I turned 18 (and ended up with my pediatric psychiatrist right up until I left for Sweden five years ago) but I really hoped that was an isolate incident. Running AH has taught me it isn’t, and that kills me.
Good. Lord. I just…I don’t even. I really wish I could just gather up all the people who suspect they’re autistic and take them back in time with me to the people who diagnosed me, because they knew what they were doing.
None of this “Oh, hey, she can talk, and there’s some emoting going on, let’s go home.” No, they video taped me so they could study the small details of the way I moved and interacted, the tones of my voice and the nature of my body language. I shudder to think of what I’d deal with being diagnosed in this day and age.
*facepalm*
*facepalmfacepalmfacepalm*
I’m so, so sorry they did that to you. That was the product of ignorance, ableism and privilege, plain and simple, and it was wrong. They thought it was okay because ableism is deeply ingrained in society, and people are taught all the wrong things about autism—and sadly, they thought it was okay because in truth, allistics aren’t naturally more empathetic than us. They just assume they are and many of them never teach their kids true empathy.
But they’re also wrong. Why shouldn’t you be emotionally capable of caring for a baby? Don’t let them get you down. This is a big thing in your life, and you deserve to be happy about it.
And congratulations!
I’m alarmed by the amount of these questions I get. Holy crap, what are they teaching psychiatrists and psychologists these days? (Fellow Hedgies, that was rhetorical.)
I don’t know if I’d say she was bullshitting you…more like she’s ignorant as fuck. She’s not right. She’s wrong. Bad wrong. Badong. Just like allistics, we have all kinds of skills and talents, and we certainly don’t lack emotion or empathy. That’s an unfortunate bit if ignorance that’s been spread around for far too long. Maybe your therapist needs to read up on things like the Intense World theory. Times, they are a’changing.
hi, i really like your blog! i tried to do this in an ask but it kept telling me i had links in it… but it didn’t. i kind of need help and i know that’s not exactly your blog’s point but i thought i should try.
i am 20 years old. my parents and 3 mental health professionalfolk think i might be on the autism spectrum. the three people i love most and who know me best think it’s a possibility. one person i know on the spectrum does not think i am and this is what makes me particularly unsure. i am confused. there’s so much i identify with, so much so much, on the spectrum not-otherwise-specified slightly aspergersy. but as with all mental-psychology stuff, that could have a different explanation. especially since nobody said anything during my childhood, and whatever symptoms i have aren’t ‘extreme.’ no one has given me a solid answer.
i want so badly to have a real diagnosis. i want so badly to have a name for what’s in my head. i want so badly to find help and to find people who understand. but i would feel guilty identifying as being on the spectrum because i might not be there and i don’t want to offend or trouble people who are.
do you have any advice they can possibly offer on figuring these things out?
———
Hopefully this goes through correctly. Tumblr can be a bit wonky at me when I edit submissions. >.<
Sorry it’s taken so long for me to answer, things have been a bit…rough for me lately. As to your question:
It sounds like you and quite a few other people you know feel you may be on the spectrum. Just because one person who’s on the spectrum doesn’t think so doesn’t mean very much. The thing is, we’re all different. It’s a spectrum because there’s a lot of variation, and it can express very, very differently. A good example: Autistic headcanons differ a lot. There’s a number of characters other autistics view as autistic that I don’t, and vice versa. No one character will read autistic to all of us, because our experiences of the world are all different, so if someone on the spectrum doesn’t think you are, that’s only one opinion.
There is absolutely nothing wrong with wanting a diagnosis, and you shouldn’t feel ashamed by any of this. Even if you end up diagnosed with something else (ASD symptoms can overlap with other things), no one has a right to tell you that you should be ashamed.
And honestly, even if your diagnosis does turn out to be a different one? I for one would not be offended that you thought you might be autistic, and I don’t have much patience for anyone who would be. Because so many of us have been there, wanting to understand these differences in ourselves, needing to put a name to it. You’re not some dudebro looking at a list of Asperger’s Syndrome symptoms on the internet and using them as an excuse to be a jerk. You’re one of us, someone who wants to understand why their world seems different from everyone else’s, and your feelings are valid. Don’t let anyone tell you otherwise.
the doctor then explained that it was “under the umbrella of Aspbergers.” My mother decided that no, I wasn’t and that was the last I ever heard of it. I did some research when I was younger, but I was in some pretty heavy denial. My lack of social skills were always swept under the rug by my parents and passed off as a product of too much internet and they suspected I was on drugs years before I even started doing them.
Now I’m 20 and only starting to take this seriously. I have legitimate problems socializing and connection with people, to the point where it becomes difficult to go to school or find a job.
I desperately want to be outgoing and social and the kind of person who’s friends with everybody (or has the ability to be, because when it comes down to it, I don’t like most people.) but when it comes to actually interacting with people, I get overwhelmed, depressed, and withdraw.
The Wendrow case. My thoughts on the Wendrow case…hoo boy. I didn’t know about the Wendrow case until I received this ask, and in the end, I had to have my husband read up on it for me, because I couldn’t get through a single article without crying. They were that nauseating. It’s hard to elucidate my feelings on this, when every article I found didn’t bother much with facts and chose instead to exonerate the father and lavish stomach-churning amounts of pity on him.
Trigger Warning: Rape, abuse, ableism.
For those who don’t know, the Wendrow case involved a young non-verbal autistic girl who, via a method of communication known as Facilitated Communication, made claims that her father had raped her multiple times. To make a long short story, in the end, because she couldn’t perform like a trained monkey in court, her father was acquitted.
Do I sound bitter? I can’t help it. The articles really were gross. Just the very fact that the police taking the girl’s word as true is regarded as them “not trying to find the truth” is enough to make me want to cry. My feelings on the matter are thus a bit tangled, and revolve mostly around the criticism (dare I even call it) of Facilitated Communication, which is so rife with allistic privilege, I want to slap someone.
Those who are tested—yes, tested—sometimes prove unable to communicate via FC under pressure, and people (all of them allistic) generally ask “How could it be that someone who can otherwise write speeches etc. etc. etc. with this form of communication suddenly can’t use it in a testing environment?” And because they’re allistic (and maybe because they don’t remember or know how uncomfortable testing environments are) they figure, hey, FC must not really work, and it must be the words of the Facilitator and not the autistic person themselves.
They think this because they’re allistic and thus they’ll never be stuffed in a box like a guinea pig and asked to prove that their method of communication is viable, knowing all the while that if they fail, their rights as a human beings will be stripped from them.
So when using FC in court, all the girl was able to produce was gobbledegook, which led to the father being acquitted. Her Facilitator, according to my husband, was painted really atrociously in the articles, while the father was held up as the poor victim of a misandrist witchhunting country out for tasty tasty manblood. And maybe he is innocent, but when I think about this, I can’t help but doubt. Consider how many allistic women can’t handle the pressure of a rape case. Hell, I know that I, having already faced the pain and horror of being judged unfairly due to my struggles with communication, might not be able to handle what they asked of this girl. I, who can speak for myself, am not sure I would’ve fared any better in court.
I can’t sit here and accept that FC doesn’t work and the father is innocent, because I know what it’s like to be autistic from the inside. And even if he is innocent, it doesn’t matter. It doesn’t matter because no matter how many times FC does work, it’s cases like this one that will be used as precedent instead. It’s cases like this one that will be used to strip autistics of their rights and force them to remain in unsafe environments.
In all the furor to condemn the case, no one in the press stopped and thought. They didn’t think “holy shit, this girl might have been sent back to a man who constantly rapes her.” That’s the thing. She might well have gone home to a place where she’s raped every day and can do nothing to defend herself. And even if she wasn’t, other autistics will be, helped along by this case. And I can tell you how that makes me feel: It fucking terrifies me.
Sorry, but at the moment, I don’t really have much desire to make a Facebook page. Maybe at some point, if AH grows large enough, but I really don’t much like Facebook, to be honest. If more people start requesting it, I’ll do it, but for the moment I’d prefer not to.
And apparently have been for 7 months.
Before anyone congratulates me, I’d like to explain that this isn’t really happy news for me. It could have been, but instead it left me devastated. Allow me to explain.
I haven’t spoken with most of my family for years. My mom is abusive and neglectful, and most of my family members treat me like I’m a soulless freak. My sister was the last family member I was still talking to, but a couple years ago that ended too. Something happened, and when I was honest about my feelings about it, my sister twisted everything I said and made it all about her. As usual, the way my emotions are is not acceptable to my family. And the fact that I believe forgiveness takes work and won’t simply continue sweeping the way they treated me under the carpet makes them believe I’m a heartless, unforgiving monster.
So I walked away. For the sake of my health, so I could stop hating and doubting myself, I walked away and hoped that one day my family would understand my point of view.
Clearly, they don’t.
Last night, out of the blue, I received an incredibly passive aggressive email from my sister, stating that I’d been an aunt for seven fucking months and she
was going to write sooner but wasn’t sure if I could handle the response or probably the lack there of.
Because obviously I am an evil heartless monster who wouldn’t be happy for her.
I wasn’t even given a chance. Just like always, my family makes huge assumptions about my emotions, about whether I even have them. After all this time, they still believe they’ve done nothing wrong and I’m just cold and heartless. They think I have no heart to break, no soul to bruise, and that’s not true. I took me a long time to stop crying; my eyes still feel swollen and cruddy. I’m trying my best to cope with this, on top of everything else in my life, on top of the fibromyalgia and the depression, but I’m just so tired.
And the worst part was discovering how easy it is for all my hard work to be torn down. I thought I would go the rest of my life without wishing that I wasn’t autistic, that I was just like everyone else. I thought I had finally accepted that the problem isn’t me, it's them. Last night I discovered how fragile those things are. Those feelings don’t just stop, simply because we’ve removed ourselves from what causes them. Now I know they might always be there, waiting for me.
I hurt so much. I’m angry and frustrated and in a complete lose/lose situation. Unless I want to give in and ask for forgiveness when I’m not the one who’s in the wrong, nothing I do here will make a difference. I’m not like the rest of my family and so I will always be the cold, heartless one to them.
I guess the reason I’m mentioning this is because it might be a little quiet here at AH for a while. I’m still struggling to cope with all the other things; this has knocked me on my ass. It will take a little time to put the pieces back together, and I don’t actually know how much I’ll get done during that time. I figured an explanation was in order.