David Cameron Staples (aka Catsidhe), Autism 101 on Catsidhe
Autism 101
I did a talk, and the second time I gave this talk, it was recorded. (Well, most of it. The last couple of minutes of Q&A were dropped because the first five minutes was spent swearing over getting the slides working. But that first five minutes has been cut, so it's straight into the talk.)
It's called Autism 101, and seems to have been well received.
It turns out that advocacy is hard, especially if you have a condition which affects communication with Neurotypical people, because about 90% of advocacy is in convincing NTs to help. And, of course, it is difficult to convince people to help with a condition which affects communication if you have a condition which affects communication, because Irony is a universal law alongside Gravity and Stupidity.
And it's especially hard when the responses are mostly along the lines of "That's great, that's awesome, that's a really good project, you're doing great stuff here, but you can't have what you're asking for." It's navigating a labyrinth, where most of the paths lead to dead ends, but the very act of getting there has made other paths unavailable. No, really, the movie Labyrinth is a very good analogy for it. The first trick is finding a way to even get into the labyrinth, and then you have to find out how to progress from the outer ring, and then it's dead ends and changing paths and oubliettes and goblins and people who may be helping and may be sending you on a wild goose chase, and you can never tell which. It's exhausting.
But I keep doing it because I can, on behalf of the ones who can't, so that they don't have to. Thus all the hard work and fighting for each small win. A talk at a conference, which turns out to be popular. Eventually, soon, a website to tell autistic students how better to deal with being autistic students and their teachers and peers how to deal with them. And eventually, I'm hoping to make that website include information for staff on the spectrum. And then for people who think they might be on the spectrum (because if you are on the spectrum but don't know it, then you will feel not included by information stated to be for autistic people because you don't know whether it applies to you or not and don't want to assume, even though that exact feeling is in itself a sign that it probably does apply to you and did I mention Irony as a universal force?). And for parents who think they have autistic children and don't know what to do about it (and don't know where to go for help, and might wonder what's so bad about Autism Speaks anyway).
And eventually (maybe sooner than I dared hope) there will be quiet spaces on campus marked on the map (for those who know to look). There will be quiet rooms set aside for the use of autistic people, to recover a spoon or two between classes. There will be not just information, but assistance, and advocacy, and maybe even community between the autistic members of the university community, and beyond.
This isn't all me, by any stretch. I have a co-conspirator, who is also on the spectrum, and is also pushing and talking to people and making contacts and running at the limits of her spoons, and she has achieved more than I would have been able to alone. Still, it's basically just the two of us doing this (and both of us have actual jobs that we're doing at the same time). But we're pushing through, as best we can. And if we're successful we will know it because then it will not just be us two anymore.
Because this is needed. I have personally met people who are worried about their children and didn't know how to help them. Who are autistic and in the closet, whether they're passing and successful or being bullied and are struggling. Who don't even know they're on the Spectrum, and privately worry about why they're different and why they can never let those difference be seen. These aren't hypotheticals, these are real people, and they all deserve better.
Autistic people who are struggling need assistance, and, because Irony, they need help to even ask for that assistance.
Autistic people who have been passing and successful deserve to be able to own their autism and wear it with pride. And that's not just for them, because autistic people generally need to see people who are autistic and succeeding. We need role models. Because so far the only autistic people most people see are on the media, and they are almost universally freaks, jokes, or both. We need people to see us as people, and, because Irony, those of us who have succeeded have typically done so because the first thing that they learned was how to hide it. The picture of autism is of failure because success is invisibility. The autistic people who are struggling need to be able to see that it doesn't have to be that way. That they don't have to be ashamed of who they are. And the parents of autistic children need to able to see that, despite what they may fear, it doesn't have to be a tragedy. That their children too can be proud of who they are.
To raising Autism awareness and Acceptance, and battling negative stereotypes about Autism. To advocate for the inclusion of Autistic people in the community. To offer a forum to broadcast our stories and thoughts, and to help the messages of Autistic people and non-Austistic allies reach as many people as possible.
Showing posts with label LiveJournal. Show all posts
Showing posts with label LiveJournal. Show all posts
Friday, November 2, 2018
Wednesday, November 1, 2017
Sunday, November 1, 2015
Cages and Sanctuaries
Catsidhe posts "Cages and Sanctuaries" on LiveJournal
Content Warning for discussion of isolation and restraints.
What is the difference between a cage and a sanctuary?
Content Warning for discussion of isolation and restraints.
What is the difference between a cage and a sanctuary?
Autistic ear, autistic voice
Nightengale "Autistic ear, autistic voice" from LiveJournal
As a (still) mostly closeted autistic, I didn’t participate in Autistic Speaking Day last year. The year before, I had written about why I was still in the shadows. And so last year, when the day came and went, I couldn’t think of anything to add.
I felt that way for much of this year as well. But then I thought about the ways I speak, and listen, as an autistic, for autistics, even when closeted.
Unusually (but not uniquely), for an autistic, my voice has long been my strength. I used words early and often. I wanted to know the name of everything. I puzzled over dogwood trees that didn’t bark (I barked at them) and a city called Braintree where there were no brains on the trees. I read and read and read. To this day, there are still words I know from reading which I have never heard spoken, which makes pronunciation a challenge if I ever do attempt to use them myself. I still read and read and read. I love that the words “read” past tense and “read” present tense are spelled the same but pronounced differently. I hear words spoken out loud in my head when I read or type. I cannot think in pictures without translating them into words first.
When older, I studied other languages. Latin, then French, then American Sign Language. Frustrated when my English teachers did not show us how to diagram sentences, I loved the structured way Latin grammar was taught. I loved my French 1 teacher’s insistence that French was not a code of English and the idea that languages were more than lists of words. I loved the grammatical markers of ASL, even though my visual processing challenges made and make them hard for me to see and master. I loved understanding English words with Latin roots and Greek roots and German roots and Arabic roots, and how that leads to multiple synonyms. I agree with Mark Twain, who is attributed to having said that the “The difference between the almost right word and the right word is the difference between a lightning bug and lightning.” Thinking about that quote makes me think about the way I learned the ASL for “lightening bug,” a story I cherish, and all the difference in nuance between “lightening bug” and “firefly” describing the same insect species.
Read More Here.
As a (still) mostly closeted autistic, I didn’t participate in Autistic Speaking Day last year. The year before, I had written about why I was still in the shadows. And so last year, when the day came and went, I couldn’t think of anything to add.
I felt that way for much of this year as well. But then I thought about the ways I speak, and listen, as an autistic, for autistics, even when closeted.
Unusually (but not uniquely), for an autistic, my voice has long been my strength. I used words early and often. I wanted to know the name of everything. I puzzled over dogwood trees that didn’t bark (I barked at them) and a city called Braintree where there were no brains on the trees. I read and read and read. To this day, there are still words I know from reading which I have never heard spoken, which makes pronunciation a challenge if I ever do attempt to use them myself. I still read and read and read. I love that the words “read” past tense and “read” present tense are spelled the same but pronounced differently. I hear words spoken out loud in my head when I read or type. I cannot think in pictures without translating them into words first.
When older, I studied other languages. Latin, then French, then American Sign Language. Frustrated when my English teachers did not show us how to diagram sentences, I loved the structured way Latin grammar was taught. I loved my French 1 teacher’s insistence that French was not a code of English and the idea that languages were more than lists of words. I loved the grammatical markers of ASL, even though my visual processing challenges made and make them hard for me to see and master. I loved understanding English words with Latin roots and Greek roots and German roots and Arabic roots, and how that leads to multiple synonyms. I agree with Mark Twain, who is attributed to having said that the “The difference between the almost right word and the right word is the difference between a lightning bug and lightning.” Thinking about that quote makes me think about the way I learned the ASL for “lightening bug,” a story I cherish, and all the difference in nuance between “lightening bug” and “firefly” describing the same insect species.
Read More Here.
Saturday, November 1, 2014
To Whom Am I Speaking?
Catsidhe writes To Whom Am I Speaking? on LiveJournal
Autistics Speaking Day, 2014.
When I write about Autism, who am I writing to?
[My Special Interest is linguistics, so already I have gotten distracted over how that sentence should, in theory, be "to whom am I writing", because dative. But the dative is dropped when the preposition is split in English, because it's fossilised, and no longer productive. And there's nothing wrong with that, that's just how English works. And then I got distracted for a moment about the "because noun" construction, and how useful it is at summarising an entire field of study into one word, and how it expresses the idea of "there are lots of reasons for this, but this margin is too narrow for them, and they are left as an exercise for the reader", and then I thought that what that construction really does is act as shorthand for "there are reasons, and if I start enumerating them, I won't have any time for anything else." And then I thought that this aside could probably have been expressed as "I got distracted by the first sentence, because linguistics."]
Anyway, am I talking to other Autism Advocates? Because if I am, I'm talking to people who already know what I'm about to say. As soon as I mentioned a Special Interest in the above aside, they knew that I had to fight my way back to the point from it. So I don't think I'm talking to them, because I have nothing to say which they haven't experienced.
Am I talking to Parents of Autists? That's hard. I hope I am, and I hope they're listening. I've see parents, however, who don't care what I have to say on the matter. Parents in Autism Speaks, or Age of Autism, who are the only people who could possibly ever speak for their children, because any autistic person who is articulate enough to propound an opinion is by definition not autistic enough to represent their child, and anyone who is as thoroughly afflicted is, by definition, unable to articulate an opinion. Don't we hear the continual grief at never hearing the words "I love you"? I mean, I could get angry that they wilfully ignore the people who try to tell them the behaviours which mean "I love you", but they're too busy looking for the correct form that they reject the message. i could get angry at that, but I'm usually too angry that they tend also to support anti-vaccination and chelation and systematic psychological torment in the name of "treatment". The Judge Rotenberg Center for the Torture of Autists still exists, and its operators have not been sent to the Hague in chains. Parents of Autists who don't listen to Autists don't anger me for that alone. And the Parents of Autists who do listen to us have my respect. It can't be easy learning that your child is autistic, and seeking out a whole other culture and seeking to learn from them is amazingly hard: trust us when we say that we understand this, because we do that every time we walk out the door in the morning. So I'm not talking to the "you're too functional to be autistic" parents, because they're already shouting me down, and I'm not talking to the parents who seek out Autists and ask them what to do, because I don't need to talk to them: they're already listening.
Am I talking to Allists? Neurotypicals? People Without Autism? Because it seems sometimes that I could wear a sign and walk the streets of the city, screaming in people's faces, and they still wouldn't give a shit about what I say. The media generally seems to have four stories about Autism: 1) Doctors have found a (cause|potential cure) for Autism. (Spoiler: no, they haven't.) 2) Parent of an Autistic child is lauded for their bravery and hard work and success with a revolutionary new treatment for autism. (Which isn't to say that they haven't put in a lot of work, and come across something which works for them and maybe others, and it's not a bed of roses... but we never hear from the child.) 3) Tragic death/injury/assault/humiliation of an Autist, not only but far too often at the hands of their own parents. (And almost every. Single. Time. the Autism is used as a mitigating factor: that the child was autistic is used to make the crime not as bad, that it's understandable for the parent to have done this, and if you don't believe me, look up the Issy Stapleton case.) 4) Temple Grandin or John Elder Robison. I don't hear the voices on TV or the Radio of any Autists outside fiction who aren't these two. Not to begrudge them a voice, but if the number of Autists out there really is one in eighty-eight, you'd thing the news and lifestyle shows could at least pretend to find one of us to ask when there's news about us. But my experience so far is that Autism is a fascinating subject, but actual Autists aren't worth considering. Sometimes I feel like the woman in labour in Monty Python's Meaning of Life: "What do I do?" "Nothing, dear, you're not qualified!"
Am I speaking to my co-workers? Some of them are really cool about it all: they couldn't care if I can make a phone call, so long as the work gets done. Some co-workers, on the other hand, keep asking me to do things like they're nothing hard at all, like go to meetings, and phone strangers on a daily basis, and remember something they just told me but which hasn't been written down, and I keep having to say "I'm autistic, remember?" I shouldn't have to keep saying it. I shouldn't have to keep defending my failures with that. And what I hate most about it is that I have promised myself that my autism will only ever be an explanation, not an excuse. But whenever I'm forced to remind the same person, again, that I'm autistic, it feels more and more like an excuse. Him forgetting that I might have difficulties raises the same demons I battled inside my own head for decades, the same feelings of inadequacy and uselessness, and that there was no excuse, except that I was a lazy failure. Autism gave me a reason, and a weapon to beat those demons down: I'm allowed to not be good at those things. I'm supposed to not be good at them. I'm allowed to find them stressful and anxiety inducing and distressing and painful. I'm allowed to want to avoid them, and I should be allowed to whenever it's feasible. But when those difficulties are ignored, or treated like an annoying quirk, rather than something which can render me useless for days, then those demons sneak out and return to gnawing at my soul. But as I do have to keep reminding those co-workers, I don't think I'm talking to them, because they're not going to change their treatment of me anyway.
So, by the process of elimination, I think I've identified who I am talking to. ["To whom I am talking." Sorry. Reflex.]
You out there, who think you are Autistic, but aren't sure. Who are worried that everything you read about Autism sounds more and more like you're own life history, but have been convinced by Rain Man and Autism Speaks that you can't be Autistic. For everyone who is still trying to come to terms with your diagnosis, whether it was delivered this morning, or a decade ago. To children, teenagers, adults. To everyone who feels like they're the only person in the world dealing with this. I'm talking to you.
And what I'm saying is this: you aren't alone. You feel alone, but we all do. To an extent that comes with the condition. (I don't know whether that's a necessary part of being on the Spectrum, or a simple result of growing up isolated from anyone who really understands you.) But I beg you to read Autistics Speaking Day posts, all of them you can bear, and to realise that you are learning something from each one: not what it is like to be Autistic, but how each one is familiar. Each post will feel like an old memory; you may gain new insights, but they're insights into yourself. And the more you feel that twist in your stomach as you read someone else's words describing your own experience, as you're never seen it laid out before, the more you should know that you are one of us; that you have found your people. That you belong.
To you, I say: welcome. Hang around. You are under no obligation to say anything, but neither are you obliged to remain silent. Speak up as and when you are comfortable doing so. But I beg you to at least listen to your peers. Because it helps immeasurably just to know that they're there. And we understand.
Autistics Speaking Day, 2014.
When I write about Autism, who am I writing to?
[My Special Interest is linguistics, so already I have gotten distracted over how that sentence should, in theory, be "to whom am I writing", because dative. But the dative is dropped when the preposition is split in English, because it's fossilised, and no longer productive. And there's nothing wrong with that, that's just how English works. And then I got distracted for a moment about the "because noun" construction, and how useful it is at summarising an entire field of study into one word, and how it expresses the idea of "there are lots of reasons for this, but this margin is too narrow for them, and they are left as an exercise for the reader", and then I thought that what that construction really does is act as shorthand for "there are reasons, and if I start enumerating them, I won't have any time for anything else." And then I thought that this aside could probably have been expressed as "I got distracted by the first sentence, because linguistics."]
Anyway, am I talking to other Autism Advocates? Because if I am, I'm talking to people who already know what I'm about to say. As soon as I mentioned a Special Interest in the above aside, they knew that I had to fight my way back to the point from it. So I don't think I'm talking to them, because I have nothing to say which they haven't experienced.
Am I talking to Parents of Autists? That's hard. I hope I am, and I hope they're listening. I've see parents, however, who don't care what I have to say on the matter. Parents in Autism Speaks, or Age of Autism, who are the only people who could possibly ever speak for their children, because any autistic person who is articulate enough to propound an opinion is by definition not autistic enough to represent their child, and anyone who is as thoroughly afflicted is, by definition, unable to articulate an opinion. Don't we hear the continual grief at never hearing the words "I love you"? I mean, I could get angry that they wilfully ignore the people who try to tell them the behaviours which mean "I love you", but they're too busy looking for the correct form that they reject the message. i could get angry at that, but I'm usually too angry that they tend also to support anti-vaccination and chelation and systematic psychological torment in the name of "treatment". The Judge Rotenberg Center for the Torture of Autists still exists, and its operators have not been sent to the Hague in chains. Parents of Autists who don't listen to Autists don't anger me for that alone. And the Parents of Autists who do listen to us have my respect. It can't be easy learning that your child is autistic, and seeking out a whole other culture and seeking to learn from them is amazingly hard: trust us when we say that we understand this, because we do that every time we walk out the door in the morning. So I'm not talking to the "you're too functional to be autistic" parents, because they're already shouting me down, and I'm not talking to the parents who seek out Autists and ask them what to do, because I don't need to talk to them: they're already listening.
Am I talking to Allists? Neurotypicals? People Without Autism? Because it seems sometimes that I could wear a sign and walk the streets of the city, screaming in people's faces, and they still wouldn't give a shit about what I say. The media generally seems to have four stories about Autism: 1) Doctors have found a (cause|potential cure) for Autism. (Spoiler: no, they haven't.) 2) Parent of an Autistic child is lauded for their bravery and hard work and success with a revolutionary new treatment for autism. (Which isn't to say that they haven't put in a lot of work, and come across something which works for them and maybe others, and it's not a bed of roses... but we never hear from the child.) 3) Tragic death/injury/assault/humiliation of an Autist, not only but far too often at the hands of their own parents. (And almost every. Single. Time. the Autism is used as a mitigating factor: that the child was autistic is used to make the crime not as bad, that it's understandable for the parent to have done this, and if you don't believe me, look up the Issy Stapleton case.) 4) Temple Grandin or John Elder Robison. I don't hear the voices on TV or the Radio of any Autists outside fiction who aren't these two. Not to begrudge them a voice, but if the number of Autists out there really is one in eighty-eight, you'd thing the news and lifestyle shows could at least pretend to find one of us to ask when there's news about us. But my experience so far is that Autism is a fascinating subject, but actual Autists aren't worth considering. Sometimes I feel like the woman in labour in Monty Python's Meaning of Life: "What do I do?" "Nothing, dear, you're not qualified!"
Am I speaking to my co-workers? Some of them are really cool about it all: they couldn't care if I can make a phone call, so long as the work gets done. Some co-workers, on the other hand, keep asking me to do things like they're nothing hard at all, like go to meetings, and phone strangers on a daily basis, and remember something they just told me but which hasn't been written down, and I keep having to say "I'm autistic, remember?" I shouldn't have to keep saying it. I shouldn't have to keep defending my failures with that. And what I hate most about it is that I have promised myself that my autism will only ever be an explanation, not an excuse. But whenever I'm forced to remind the same person, again, that I'm autistic, it feels more and more like an excuse. Him forgetting that I might have difficulties raises the same demons I battled inside my own head for decades, the same feelings of inadequacy and uselessness, and that there was no excuse, except that I was a lazy failure. Autism gave me a reason, and a weapon to beat those demons down: I'm allowed to not be good at those things. I'm supposed to not be good at them. I'm allowed to find them stressful and anxiety inducing and distressing and painful. I'm allowed to want to avoid them, and I should be allowed to whenever it's feasible. But when those difficulties are ignored, or treated like an annoying quirk, rather than something which can render me useless for days, then those demons sneak out and return to gnawing at my soul. But as I do have to keep reminding those co-workers, I don't think I'm talking to them, because they're not going to change their treatment of me anyway.
So, by the process of elimination, I think I've identified who I am talking to. ["To whom I am talking." Sorry. Reflex.]
You out there, who think you are Autistic, but aren't sure. Who are worried that everything you read about Autism sounds more and more like you're own life history, but have been convinced by Rain Man and Autism Speaks that you can't be Autistic. For everyone who is still trying to come to terms with your diagnosis, whether it was delivered this morning, or a decade ago. To children, teenagers, adults. To everyone who feels like they're the only person in the world dealing with this. I'm talking to you.
And what I'm saying is this: you aren't alone. You feel alone, but we all do. To an extent that comes with the condition. (I don't know whether that's a necessary part of being on the Spectrum, or a simple result of growing up isolated from anyone who really understands you.) But I beg you to read Autistics Speaking Day posts, all of them you can bear, and to realise that you are learning something from each one: not what it is like to be Autistic, but how each one is familiar. Each post will feel like an old memory; you may gain new insights, but they're insights into yourself. And the more you feel that twist in your stomach as you read someone else's words describing your own experience, as you're never seen it laid out before, the more you should know that you are one of us; that you have found your people. That you belong.
To you, I say: welcome. Hang around. You are under no obligation to say anything, but neither are you obliged to remain silent. Speak up as and when you are comfortable doing so. But I beg you to at least listen to your peers. Because it helps immeasurably just to know that they're there. And we understand.
Saturday, November 2, 2013
Autism on TV isn't always done wrong
Catsidhe posts "Autism on TV isn't always done wrong" on LiveJournal. Warnings for spoilers, and Trigger Warnings for violence, murder.
Overload is a feature of autism, to the point were I would talk about how my autism interacts with my circumstance, but there is so much going on that I find myself unable to extract any particular thing to discuss: the forest is so big, I can't describe any trees.
So instead of talking about that, let me talk about television.
There are autists on TV, even if their attributes are usually inconsistent and subject to plausible deniability by the show's writers. That is: it doesn't matter how obvious that the traits are, the writers will deny that the character is anything of the sort. Presumably so that they can explain away any mistakes they make.
Still, there is Sheldon Cooper, and Temperance Brennan, and Data, and (I'm told) Abed Nadir.
Characters in historical features, however, are more difficult to nail down. Not least because the assumption seems to be that, in accordance with Age of Autism dogma, there weren't any autists before the 20th century.
Which is, of course, ridiculous.
Historical autists who could feign normality, or were in circumstances where they could function, were just folks who were odd. Autists who could not function were "idiots", and typically ignored in the records. If they lived that long.
There's a good argument that Fitzwilliam Darcy was on the spectrum, given how he was described as acting stiffly and formally, and abnormally so even by the standards of the time, but hiding behind his demeanour a rare kindness and sensitivity.
Sherlock Holmes, for different reasons, as well.
But as far as it goes, that would seem to be that, unless you include the archetypal absent-minded professor. And even that is typically a trope in its own right, and with only tangential connection to autistic traits as is typically presented.
And then there is Miss Fisher's Murder Mysteries, series 2, episode 8: "The Blood of Juana the Mad".
Spoilers and potential triggers ahead
Overload is a feature of autism, to the point were I would talk about how my autism interacts with my circumstance, but there is so much going on that I find myself unable to extract any particular thing to discuss: the forest is so big, I can't describe any trees.
So instead of talking about that, let me talk about television.
There are autists on TV, even if their attributes are usually inconsistent and subject to plausible deniability by the show's writers. That is: it doesn't matter how obvious that the traits are, the writers will deny that the character is anything of the sort. Presumably so that they can explain away any mistakes they make.
Still, there is Sheldon Cooper, and Temperance Brennan, and Data, and (I'm told) Abed Nadir.
Characters in historical features, however, are more difficult to nail down. Not least because the assumption seems to be that, in accordance with Age of Autism dogma, there weren't any autists before the 20th century.
Which is, of course, ridiculous.
Historical autists who could feign normality, or were in circumstances where they could function, were just folks who were odd. Autists who could not function were "idiots", and typically ignored in the records. If they lived that long.
There's a good argument that Fitzwilliam Darcy was on the spectrum, given how he was described as acting stiffly and formally, and abnormally so even by the standards of the time, but hiding behind his demeanour a rare kindness and sensitivity.
Sherlock Holmes, for different reasons, as well.
But as far as it goes, that would seem to be that, unless you include the archetypal absent-minded professor. And even that is typically a trope in its own right, and with only tangential connection to autistic traits as is typically presented.
And then there is Miss Fisher's Murder Mysteries, series 2, episode 8: "The Blood of Juana the Mad".
Spoilers and potential triggers ahead
Friday, November 1, 2013
Speaking from the shadows
Nightengale writes "Speaking from the shadows" on LiveJournal.
I was debating whether or not I should say anything for Autistics Speaking Day this year, because most of the time, I’m not speaking out as an openly autistic person. A few people know at work and in the community, but in most cases when I speak about autism at work or at community events, I do it without disclosure. And so I wonder if I’m a legitimately speaking autistic in the spirit of Autistics Speaking Day.
But I’ve decided to speak out. And specifically, I’m going to speak about the three reasons I’m not openly autistic at work and in my community, things I’m afraid would happen if I were. Things I have legitimate reason to fear, based on current available evidence. My fears are that I would be disbelieved, professionally discredited or tokenized.
Please Read the rest on Nightengale's original post.
I was debating whether or not I should say anything for Autistics Speaking Day this year, because most of the time, I’m not speaking out as an openly autistic person. A few people know at work and in the community, but in most cases when I speak about autism at work or at community events, I do it without disclosure. And so I wonder if I’m a legitimately speaking autistic in the spirit of Autistics Speaking Day.
But I’ve decided to speak out. And specifically, I’m going to speak about the three reasons I’m not openly autistic at work and in my community, things I’m afraid would happen if I were. Things I have legitimate reason to fear, based on current available evidence. My fears are that I would be disbelieved, professionally discredited or tokenized.
Please Read the rest on Nightengale's original post.
Thursday, November 1, 2012
Nightengale Autistics Speaking Day, 2012
Autistics Speaking Day, 2012 by Nightengale on Nightengale of Samarkand LiveJournal
A few years ago, someone proposed to raise autism awareness, a sticky topic in and of itself, by asking people not to use social media for a day. The idea was that avoiding a form of communication would promote empathy for autistic people who can't communicate. It's not clear if any actual autistic people were involved in creating this idea, although Temple Grandin's name is mentioned as a supporter.
Corina Lynn Becker, an autistic adult, proposed an alternative. Pointing out that social media can be an empowering form of communication for the autistic community, she conceptualized complete communication shut-down for neurotypical people, joined with an online media blitz created by autistics themselves. Thus was Autistics Speaking Day born.
Because there are definite communication challenges faced by autistic people. Some have no reliable method of communication. Some are non-verbal but communicate by typing, signing or other alternative methods. Some have communication abilities which change dramatically depending on circumstances. Some of these communication challenges can be improved, or their impact lessoned, through therapy, technology or creativity. Some can't, or at least, we haven't yet found a way to improve them.
But there is another communication issue which faces even those autistics with relatively strong language skills.
Because communication does not occur in a vaccuum. If I start talking right now, sitting alone in my living room, I am talking but not communicating. I can exercise the full extent of my vocabulary, modulate my voice and pay meticulous attention to grammar and still not have communicated anything whatsoever. My typing for the past hour is not communication until I press “POST” and someone else stops to read. The catchphrase is “communication partner.” It takes at least two people to communicate, whether the method be oral, signed, typed, pictoral or otherwise. And many autistic people lack willing communication partners.
In the past week, I've read about a panel about autism being held at a Sci-Fi con which has not invited any autistics to speak. And I've read attempts to silence an autistic person who questioned this decision, rather than to recognize the mistake and seek out an autistic voice.
In the past week, I've read about a conference being held on autistic self-determination which does include autistic speakers. However, it offers registration merely to "Parents" and "Professionals"
In the past week, I've read an article about the impact the new autism diagnostic criteria will have on the parents and caregivers of people with autism, without ever mentioning the impact on actual autistic people.
None of these situations exist because autistic people cannot participate on panels, attend conferences or give quotes for newspaper articles. Some autistic people can do those things, and some can't.
These situations exist because autistic people are assumed to be unable to participate on panels, attend conferences or give quotes for newspaper articles, and in some cases, are actively thwarted in their attempts to do so.
And yet I've seen a glimmer of hope. I've seen a conference where "person with autism" is one of the registration options. I've seen a conference where non-verbal autistic people were able to participate, due to a combination of technology, support workers and a willingness of the audience, autistic and neurotypical, to become partners in this less familiar form of communication. I have seen articles about autism which actually quote autistics.
And all over the internet, I see autistics communicating. With each other, with parents of children with autism, with other interested neurotypicals.
So communication can happen. Verbally, electronically, pictorially, communication can happen. It's just far too rare. And it takes too much fighting. And the ultimate irony is the proportion of that fighting which falls on the shoulders of those who have neurologically based social communication challenges.
In a few weeks I am giving a talk to a group of pediatricians and trainees about the health needs of children who have autism. And in addition to giving medical statistics and information about community resources, I plan to quote autistic individuals whenever possible. Because we need to normalize the idea that autistics should be involved in conversations about autism. To borrow a phrase from biology, having a voice (verbal or otherwise) is necessary but not sufficient. It takes two to tango. And it takes two to communicate.
Autistics are speaking. Why is it so hard to get others to listen?
And with that, I'm going to go listen to a range of autistic voices over at Autistics Speaking Day 2012
A few years ago, someone proposed to raise autism awareness, a sticky topic in and of itself, by asking people not to use social media for a day. The idea was that avoiding a form of communication would promote empathy for autistic people who can't communicate. It's not clear if any actual autistic people were involved in creating this idea, although Temple Grandin's name is mentioned as a supporter.
Corina Lynn Becker, an autistic adult, proposed an alternative. Pointing out that social media can be an empowering form of communication for the autistic community, she conceptualized complete communication shut-down for neurotypical people, joined with an online media blitz created by autistics themselves. Thus was Autistics Speaking Day born.
Because there are definite communication challenges faced by autistic people. Some have no reliable method of communication. Some are non-verbal but communicate by typing, signing or other alternative methods. Some have communication abilities which change dramatically depending on circumstances. Some of these communication challenges can be improved, or their impact lessoned, through therapy, technology or creativity. Some can't, or at least, we haven't yet found a way to improve them.
But there is another communication issue which faces even those autistics with relatively strong language skills.
Because communication does not occur in a vaccuum. If I start talking right now, sitting alone in my living room, I am talking but not communicating. I can exercise the full extent of my vocabulary, modulate my voice and pay meticulous attention to grammar and still not have communicated anything whatsoever. My typing for the past hour is not communication until I press “POST” and someone else stops to read. The catchphrase is “communication partner.” It takes at least two people to communicate, whether the method be oral, signed, typed, pictoral or otherwise. And many autistic people lack willing communication partners.
In the past week, I've read about a panel about autism being held at a Sci-Fi con which has not invited any autistics to speak. And I've read attempts to silence an autistic person who questioned this decision, rather than to recognize the mistake and seek out an autistic voice.
In the past week, I've read about a conference being held on autistic self-determination which does include autistic speakers. However, it offers registration merely to "Parents" and "Professionals"
In the past week, I've read an article about the impact the new autism diagnostic criteria will have on the parents and caregivers of people with autism, without ever mentioning the impact on actual autistic people.
None of these situations exist because autistic people cannot participate on panels, attend conferences or give quotes for newspaper articles. Some autistic people can do those things, and some can't.
These situations exist because autistic people are assumed to be unable to participate on panels, attend conferences or give quotes for newspaper articles, and in some cases, are actively thwarted in their attempts to do so.
And yet I've seen a glimmer of hope. I've seen a conference where "person with autism" is one of the registration options. I've seen a conference where non-verbal autistic people were able to participate, due to a combination of technology, support workers and a willingness of the audience, autistic and neurotypical, to become partners in this less familiar form of communication. I have seen articles about autism which actually quote autistics.
And all over the internet, I see autistics communicating. With each other, with parents of children with autism, with other interested neurotypicals.
So communication can happen. Verbally, electronically, pictorially, communication can happen. It's just far too rare. And it takes too much fighting. And the ultimate irony is the proportion of that fighting which falls on the shoulders of those who have neurologically based social communication challenges.
In a few weeks I am giving a talk to a group of pediatricians and trainees about the health needs of children who have autism. And in addition to giving medical statistics and information about community resources, I plan to quote autistic individuals whenever possible. Because we need to normalize the idea that autistics should be involved in conversations about autism. To borrow a phrase from biology, having a voice (verbal or otherwise) is necessary but not sufficient. It takes two to tango. And it takes two to communicate.
Autistics are speaking. Why is it so hard to get others to listen?
And with that, I'm going to go listen to a range of autistic voices over at Autistics Speaking Day 2012
Independence through reliance upon others.
Catsidhe writes Independence through reliance upon others on LiveJournal
I don't really think of myself as "disabled".
Even when I got the diagnosis of Asperger's. I mean, Asperger's is an Autism Spectrum Disorder, and Autism is classified as a disability, but this is how I've always been, so I don't feel any more "disabled" after the diagnosis than I did before.
Sure, there are things I can't do as well as most people, but usually I can work around them. "Please email that info to me, because I have already forgotten it." "Please, only one person talk at a time, otherwise I can't hear anyone." "Say again?" "I don't understand."
But then sometimes the walls fall down.
Last week was very difficult, but it could have been much worse.
The Tuesday before last, and the Friday before that, I had the visual halo of a migraine after going to the gym. This was disturbing – to say the least – so my wife, Mim, made an appointment for me at the doctor's.
And on the Wednesday evening – the evening before the appointment – my car's engine changed from running rough to tapping as I drove home from filling the tank. When I checked, the oil was basically dry.
So on Thursday morning Mim drove me to the doctor's appointment, where he told me I was probably dehydrated, and that I needed blood tests for everything. I was at high risk for Diabetes, high cholesterol, Lymph dysfunction, all sorts of things.
After the appointment, we went shopping and got a bottle of oil, and I filled the engine when we got home. I drove around the block, but the tapping didn't go away, so Mim called a mechanic, and we drove over for him to look at the car. It turned out that the tapping was fixable, the car needed a service (which I knew), and I had severely over-filled the engine, and was at risk of blowing the gaskets. We booked it in for a service the following Monday. Which meant that I would have to figure out the new train ticketing system to get to and from work.
On Saturday, Mim took me to get phlebotomised, which was relatively painless, even if it did delay my morning coffee by a couple of hours.
On Monday, she followed me to the mechanic's, and took me in to work. She gave her phone number, so that the mechanic would talk to her about the works required, and her mother drove the car home for us. Then Mim came and collected me from work. She also booked the followup doctor's appointment when I got notification that my results were in.
I'm not diabetic, by the way. (big sigh of relief.)
But that long tale, even with the happy endings (car is fixed, bloodwork looks normal, further gym sessions have been migraine-free), brought something else to light.
I could not have done any of it on my own.
Mim had long since found a medical clinic for us to go to, and had the number to hand. Mim knew the mechanic, and had his number to hand. Mim had organised half a dozen people in an intricate dance of planning over a week, over and above the usual juggling involved with being a mother of two. Mim neither froze nor panicked when plans changed and unexpected emergencies popped up. Mim could make phone calls without having to force herself to.
If it were not for Mim, I would have had to pick a doctor randomly out of the phone book, not having any idea where to go. At this point I would have been paralysed by the choice between dozens of unknowns, and very likely given it up as Too Hard.
I would have had to pick a garage out of the phone book, again, randomly. Again, paralysed by a choice between unknowns, again likely to have given it up, or at least put it off and put it off and put it off...
I would have been unable to ask for help, leading me to be stressed out by learning how to buy a train ticket in the new system. (Although that there is now a need to learn how to buy a train ticket is another rant, for another time.)
Even if I had been able to chose a doctor or mechanic, I would have been paralysed at the act of picking up the telephone and talking to them: an absolutely excruciating experience at the best of times, and the best of times is not when I'm worried about my health and my car and everything is failing at once and I need to cold call strangers and make snap decisions and complicated (for me) planning on the run.
With Mim looking out for me, everything turned out OK, and relatively without fuss, and quickly.
Without Mim, I would still be stressing about finding a doctor, and prevaricating about actually organising to go, and putting off dealing with the car, and catching public transport in the heat and the rain, and avoiding the gym because I didn't know what was causing the migraines, and generally freaking out. Every point would have been a mountain to overcome, where most people see gentle hills at worst. And that's if Mim were to have only been on holiday last week. Without her at all in my life then I wouldn't be living where I do, likely wouldn't have the friends or social interaction that I do, wouldn't eat as well as I do.
Whenever I've made a step towards independence in the past, it was only possible because friends and family have helped me. A school friend helped me move out of my father's house, and in with him. And then helped me arrange a flat of my own. Where I lived off takeaway, and never used the kitchen, and washed my clothes far less often than I should have, and was in the early stages of scurvy before other friends noticed and gave me a prod. And those friends helped me move in to their share house, and through them I met Mim.
I owe my independence to the help of others. I don't think I would have been capable of any of it without their help.
And it was luck that led me to them: it was because my father saw an ad for the entrance exam for a selective entry state school, and he took me to take that test, and I passed, and I chose Japanese instead of French or German, and I repeated year ten, and I joined the Stage Crew. If any of those things had not happened then I wouldn't have met any of these people, and I would not be where I am now.
I simply could not have done it without their help.
And so, by this luck, this series of strokes of luck, I am privileged. I am privileged in that while I have Asperger's, I don't have to think of myself as disabled.
Because other people have helped me in those things which I cannot handle on my own, simple and normal things which most people take for granted, like arranging a place to live, and eating, and seeing a doctor, and getting the car serviced, and dealing with minor crises, and so I am saved from most of those things which could so easily go so very wrong.
I love Mim. She is my wife, and my friend, and the mother of my children, and besides all that, the person who enables me to function as if I were normal. I cannot express how grateful I am to be so lucky.
I don't really think of myself as "disabled".
Even when I got the diagnosis of Asperger's. I mean, Asperger's is an Autism Spectrum Disorder, and Autism is classified as a disability, but this is how I've always been, so I don't feel any more "disabled" after the diagnosis than I did before.
Sure, there are things I can't do as well as most people, but usually I can work around them. "Please email that info to me, because I have already forgotten it." "Please, only one person talk at a time, otherwise I can't hear anyone." "Say again?" "I don't understand."
But then sometimes the walls fall down.
Last week was very difficult, but it could have been much worse.
The Tuesday before last, and the Friday before that, I had the visual halo of a migraine after going to the gym. This was disturbing – to say the least – so my wife, Mim, made an appointment for me at the doctor's.
And on the Wednesday evening – the evening before the appointment – my car's engine changed from running rough to tapping as I drove home from filling the tank. When I checked, the oil was basically dry.
So on Thursday morning Mim drove me to the doctor's appointment, where he told me I was probably dehydrated, and that I needed blood tests for everything. I was at high risk for Diabetes, high cholesterol, Lymph dysfunction, all sorts of things.
After the appointment, we went shopping and got a bottle of oil, and I filled the engine when we got home. I drove around the block, but the tapping didn't go away, so Mim called a mechanic, and we drove over for him to look at the car. It turned out that the tapping was fixable, the car needed a service (which I knew), and I had severely over-filled the engine, and was at risk of blowing the gaskets. We booked it in for a service the following Monday. Which meant that I would have to figure out the new train ticketing system to get to and from work.
On Saturday, Mim took me to get phlebotomised, which was relatively painless, even if it did delay my morning coffee by a couple of hours.
On Monday, she followed me to the mechanic's, and took me in to work. She gave her phone number, so that the mechanic would talk to her about the works required, and her mother drove the car home for us. Then Mim came and collected me from work. She also booked the followup doctor's appointment when I got notification that my results were in.
I'm not diabetic, by the way. (big sigh of relief.)
But that long tale, even with the happy endings (car is fixed, bloodwork looks normal, further gym sessions have been migraine-free), brought something else to light.
I could not have done any of it on my own.
Mim had long since found a medical clinic for us to go to, and had the number to hand. Mim knew the mechanic, and had his number to hand. Mim had organised half a dozen people in an intricate dance of planning over a week, over and above the usual juggling involved with being a mother of two. Mim neither froze nor panicked when plans changed and unexpected emergencies popped up. Mim could make phone calls without having to force herself to.
If it were not for Mim, I would have had to pick a doctor randomly out of the phone book, not having any idea where to go. At this point I would have been paralysed by the choice between dozens of unknowns, and very likely given it up as Too Hard.
I would have had to pick a garage out of the phone book, again, randomly. Again, paralysed by a choice between unknowns, again likely to have given it up, or at least put it off and put it off and put it off...
I would have been unable to ask for help, leading me to be stressed out by learning how to buy a train ticket in the new system. (Although that there is now a need to learn how to buy a train ticket is another rant, for another time.)
Even if I had been able to chose a doctor or mechanic, I would have been paralysed at the act of picking up the telephone and talking to them: an absolutely excruciating experience at the best of times, and the best of times is not when I'm worried about my health and my car and everything is failing at once and I need to cold call strangers and make snap decisions and complicated (for me) planning on the run.
With Mim looking out for me, everything turned out OK, and relatively without fuss, and quickly.
Without Mim, I would still be stressing about finding a doctor, and prevaricating about actually organising to go, and putting off dealing with the car, and catching public transport in the heat and the rain, and avoiding the gym because I didn't know what was causing the migraines, and generally freaking out. Every point would have been a mountain to overcome, where most people see gentle hills at worst. And that's if Mim were to have only been on holiday last week. Without her at all in my life then I wouldn't be living where I do, likely wouldn't have the friends or social interaction that I do, wouldn't eat as well as I do.
Whenever I've made a step towards independence in the past, it was only possible because friends and family have helped me. A school friend helped me move out of my father's house, and in with him. And then helped me arrange a flat of my own. Where I lived off takeaway, and never used the kitchen, and washed my clothes far less often than I should have, and was in the early stages of scurvy before other friends noticed and gave me a prod. And those friends helped me move in to their share house, and through them I met Mim.
I owe my independence to the help of others. I don't think I would have been capable of any of it without their help.
And it was luck that led me to them: it was because my father saw an ad for the entrance exam for a selective entry state school, and he took me to take that test, and I passed, and I chose Japanese instead of French or German, and I repeated year ten, and I joined the Stage Crew. If any of those things had not happened then I wouldn't have met any of these people, and I would not be where I am now.
I simply could not have done it without their help.
And so, by this luck, this series of strokes of luck, I am privileged. I am privileged in that while I have Asperger's, I don't have to think of myself as disabled.
Because other people have helped me in those things which I cannot handle on my own, simple and normal things which most people take for granted, like arranging a place to live, and eating, and seeing a doctor, and getting the car serviced, and dealing with minor crises, and so I am saved from most of those things which could so easily go so very wrong.
I love Mim. She is my wife, and my friend, and the mother of my children, and besides all that, the person who enables me to function as if I were normal. I cannot express how grateful I am to be so lucky.
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