#30DaysofAutismAcceptance
Day 30:
Talk
with pride. Are you proud to be autistic? How do you show the world your pride?
So, we're finally here: the final day!
I am definitely proud to be autistic! I wouldn't change it for the world; as I said in previous posts, if a cure was offered I would never take it. I am me, I accept who I am and how I'm wired, and I wouldn't have it any other way! Yes, there are difficulties that being autistic brings, but so much of that could be alleviated and eliminated if the world accepted us as we are and accommodated us. Also if they accepted that we don't want to be "cured"; we're not diseased or anything like that.
How do I show the world my pride? By sharing with people the positives and by not kowtowing to NT norms that don't make sense, by being me and not changing who I am just to fit other people. By supporting organisations that accept and help us, that include us and are autistic-led (such as the Autistic Self-Advocacy Network and the Autism Women's Association), and speaking out against and rejecting those that promote hatred of and reject us (such as Autism $peaks). By accepting and working with the difficulties rather than fighting them.
There's probably more I could say, but I'm exhausted. I may return to this in future, depending on how the mood takes me and if anything that occurs prompts me to.
This concludes my 30DaysofAutismAcceptance posting marathon., at least for 2017.
Questions are always welcome!
Sunday 30 April 2017
30 Days of Autism Acceptance: Day 29
#30DaysofAutismAcceptance
Day 29:
Talk about executive functioning. Do you experience executive dysfunction? How do you deal with it?
First of all, apologies for the ack of post yesterday - I was at my friends' wedding so didn't have the opportunity to post. I'm still pretty knackered form it so this won't be a particularly long post, especially as I've still got today's prompt to do as well!
Musings of An Aspie has a good definition of executive dysfunction here and the slideshow is particularly useful.
I've got quite a few issues with executive dysfunction; it's always been there and I've always had some issues, but it's got worse since the fibro and ME kicked in, probably because the fatigue exacerbates it because it limits my ability to process and do stuff.
I have difficulties with planning, particularly with schedules, tidying and housework. I did a pretty good job of planning my wedding, although there were some things I was a bit lax on (fortunately there were no disasters and everything went smoothly), but there are other things I really struggle with. When I'm tired and the brain fog has kicked in, I'm pretty rubbish.
As for problem-solving, it depends on the circumstances. If I have no frame of reference at all, I'm pretty hopeless. Sometimes I can manage, but it's sporadic. Part of the difficulty lies in the fact that I can't always identify when there's a problem in the first place!
My attention is substantially affected. I'm dreadful at blocking out environmental distractions - noises, movements, etc catch my attention and distract me constantly - and I really struggle to pay any attention to something if it doesn't interest me, even if it's important.
My working memory is generally pretty bad. If someone gives me a list of instructions through speech and doesn't write them down, it's impossible for me to follow through because I just don't remember them. I need the instructions written down.
I have difficulties with inhibitions - I'm constantly fidgeting, I don't always follow conversation rules and conventions, and I'm not so great with turn-taking. I try but I'm not that great at it.
Initiating actions is a big problem, especially these days, because the fatigue, brain fog and pain exert a massive influence on it. I intend to do something but I really struggle to actually start it, and often need a lot of prodding and prompting.
When I'm under a lot of stress or in an unfamiliar environment, performing even familiar tasks can be difficult, if not impossible.
My cognitive flexibility is fairly poor. I do not cope well at all with change and I can shut down completely if it's an unexpected one, suddenly thrust upon me.
There's so much more I could say on this but I'm exhausted and so I'll be coming back to this subject in greater detail at a later date.
Day 29:
Talk about executive functioning. Do you experience executive dysfunction? How do you deal with it?
First of all, apologies for the ack of post yesterday - I was at my friends' wedding so didn't have the opportunity to post. I'm still pretty knackered form it so this won't be a particularly long post, especially as I've still got today's prompt to do as well!
Musings of An Aspie has a good definition of executive dysfunction here and the slideshow is particularly useful.
I've got quite a few issues with executive dysfunction; it's always been there and I've always had some issues, but it's got worse since the fibro and ME kicked in, probably because the fatigue exacerbates it because it limits my ability to process and do stuff.
I have difficulties with planning, particularly with schedules, tidying and housework. I did a pretty good job of planning my wedding, although there were some things I was a bit lax on (fortunately there were no disasters and everything went smoothly), but there are other things I really struggle with. When I'm tired and the brain fog has kicked in, I'm pretty rubbish.
As for problem-solving, it depends on the circumstances. If I have no frame of reference at all, I'm pretty hopeless. Sometimes I can manage, but it's sporadic. Part of the difficulty lies in the fact that I can't always identify when there's a problem in the first place!
My attention is substantially affected. I'm dreadful at blocking out environmental distractions - noises, movements, etc catch my attention and distract me constantly - and I really struggle to pay any attention to something if it doesn't interest me, even if it's important.
My working memory is generally pretty bad. If someone gives me a list of instructions through speech and doesn't write them down, it's impossible for me to follow through because I just don't remember them. I need the instructions written down.
I have difficulties with inhibitions - I'm constantly fidgeting, I don't always follow conversation rules and conventions, and I'm not so great with turn-taking. I try but I'm not that great at it.
Initiating actions is a big problem, especially these days, because the fatigue, brain fog and pain exert a massive influence on it. I intend to do something but I really struggle to actually start it, and often need a lot of prodding and prompting.
When I'm under a lot of stress or in an unfamiliar environment, performing even familiar tasks can be difficult, if not impossible.
My cognitive flexibility is fairly poor. I do not cope well at all with change and I can shut down completely if it's an unexpected one, suddenly thrust upon me.
There's so much more I could say on this but I'm exhausted and so I'll be coming back to this subject in greater detail at a later date.
Friday 28 April 2017
30 Days of Autism Acceptance: Day 28
#30DaysofAutismAcceptance
Day 28:
Talk about autism as a disability. Do you think autism is a disability or a difference? Or both? Do you feel more disabled by society than by your autism?
Short answer: both. It's very definitely a difference and they've been able to demonstrate that clearly through CT and MRI scans comparing autistic and non-autistic brain activity. The differences are apparent in everyday life: how we think, how we react, how we approach things, how we behave and so on.
The big debate is around whether autism is a disability or not. This is where it gets much more complex, and yet again, I'd like to explore it in more detail once I've had a chance to do some reading about it (and when I'm not feeling drained and exhausted).
In many ways it isn't a disability on its own, because if you apply the social model of disability (which considers the environment and circumstances to be disabling rather the condition) in many ways it isn't disabling. Adversely affected by too many noises inundating and overloading you? Remove that auditory assault and the problem has gone. Can't/don't speak for whatever reason? Typing, sign language, Makaton, communication cards, AAC, etc are just as acceptable and viable - one of the big reasons Deaf people (big-D Deaf are those who use sign language as their preferred language and communication, as opposed to little-d deaf, which is anyone with less-than-fully-functioning ears/auditory nerves/etc) don't consider themselves disabled: if everyone used sign language, the communication barrier would be nonexistent. As a wheelchair user, I can do pretty much everything I could do pre-wheelchair, if the environment is right - if I want to go somewhere and there are ramps, lifts, etc I can access it; the disabling part is if those facilities don't exist, such as steps only. If the environment is right, if our needs are met, there is no reason why we cannot do something. It is the circumstance that disables us, not the neurology/physiology. Amy Sequenzia (I know, I mention her a lot, but that's because she's amazing and has written extensively on many subjects) says similar in her article on Universal Design and Disability Acceptance.
But then, what about those who cannot take care of themselves, those labelled "low-functioning" (see previous post on functioning labels)? Yes, their condition and lack of or dysfunctional sensory integration in some cases disables them. We shouldn't be afraid to say that.
And if I'm honest, all the accessibility in the world is not always going to stop me being disabled by my conditions. If I'm tired, I can't process things properly, I can't think, I can't comprehend the words I've heard/read, my sensory sensitivity is even more heightened, I can't speak (certainly not articulately or coherently!) and self-preservation kicks in.
I was going to write more and I'll probably come back and edit this when I'm not so utterly exhausted, because there were several other things I was going to say but they've completely gone out of my head.
Day 28:
Talk about autism as a disability. Do you think autism is a disability or a difference? Or both? Do you feel more disabled by society than by your autism?
Short answer: both. It's very definitely a difference and they've been able to demonstrate that clearly through CT and MRI scans comparing autistic and non-autistic brain activity. The differences are apparent in everyday life: how we think, how we react, how we approach things, how we behave and so on.
The big debate is around whether autism is a disability or not. This is where it gets much more complex, and yet again, I'd like to explore it in more detail once I've had a chance to do some reading about it (and when I'm not feeling drained and exhausted).
In many ways it isn't a disability on its own, because if you apply the social model of disability (which considers the environment and circumstances to be disabling rather the condition) in many ways it isn't disabling. Adversely affected by too many noises inundating and overloading you? Remove that auditory assault and the problem has gone. Can't/don't speak for whatever reason? Typing, sign language, Makaton, communication cards, AAC, etc are just as acceptable and viable - one of the big reasons Deaf people (big-D Deaf are those who use sign language as their preferred language and communication, as opposed to little-d deaf, which is anyone with less-than-fully-functioning ears/auditory nerves/etc) don't consider themselves disabled: if everyone used sign language, the communication barrier would be nonexistent. As a wheelchair user, I can do pretty much everything I could do pre-wheelchair, if the environment is right - if I want to go somewhere and there are ramps, lifts, etc I can access it; the disabling part is if those facilities don't exist, such as steps only. If the environment is right, if our needs are met, there is no reason why we cannot do something. It is the circumstance that disables us, not the neurology/physiology. Amy Sequenzia (I know, I mention her a lot, but that's because she's amazing and has written extensively on many subjects) says similar in her article on Universal Design and Disability Acceptance.
But then, what about those who cannot take care of themselves, those labelled "low-functioning" (see previous post on functioning labels)? Yes, their condition and lack of or dysfunctional sensory integration in some cases disables them. We shouldn't be afraid to say that.
And if I'm honest, all the accessibility in the world is not always going to stop me being disabled by my conditions. If I'm tired, I can't process things properly, I can't think, I can't comprehend the words I've heard/read, my sensory sensitivity is even more heightened, I can't speak (certainly not articulately or coherently!) and self-preservation kicks in.
I was going to write more and I'll probably come back and edit this when I'm not so utterly exhausted, because there were several other things I was going to say but they've completely gone out of my head.
Thursday 27 April 2017
30 Days of Autism Acceptance: Day 27
#30DaysofAutismAcceptance
Day 27:
Talk about eye-contact. Do you make eye-contact? Why or why not? Does it make you uncomfortable?
I hate eye-contact. There are only about 2 or 3 people in my life that I've managed it with for more than a split second. It happens occasionally by accident but I thoroughly dislike it. It makes me feel physically uncomfortable and it's almost painful. It's too intense, and I think at least some of it is connected to sensory overload, too much information for our brains to process.
Most autistics struggle with eye contact. A lot of us hate it and don't do it at all, whereas others do it but for too long according to convention and it apparently freaks people out and makes them feel uncomfortable. There seem to be all kinds of unwritten social rules about eye contact, and they vary so much from circumstance to circumstance and person to person and situation to situation that I long ago gave up trying to make any sense of them.
And if you don't conform to the rules, if you're different, it can cause massive problems. One of the reasons I was so keen to get a formal diagnosis was because I'd go for job interviews, fail to get the job and in the feedback they invariably said that they didn't like that I didn't make eye contact. I've since been informed that not making eye contact at a job interview sends the message that you lack confidence, that you're hiding something/not being honest, etc, so they're not going to hire you. Or if you're not making eye contact or looking at the person speaking, you're assumed to not be paying attention and they get upset with you.
For us, eye contact isn't necessary, and can actually be distracting and off-putting. It's a different way of doing things. Not a lesser way.
Day 27:
Talk about eye-contact. Do you make eye-contact? Why or why not? Does it make you uncomfortable?
I hate eye-contact. There are only about 2 or 3 people in my life that I've managed it with for more than a split second. It happens occasionally by accident but I thoroughly dislike it. It makes me feel physically uncomfortable and it's almost painful. It's too intense, and I think at least some of it is connected to sensory overload, too much information for our brains to process.
Most autistics struggle with eye contact. A lot of us hate it and don't do it at all, whereas others do it but for too long according to convention and it apparently freaks people out and makes them feel uncomfortable. There seem to be all kinds of unwritten social rules about eye contact, and they vary so much from circumstance to circumstance and person to person and situation to situation that I long ago gave up trying to make any sense of them.
And if you don't conform to the rules, if you're different, it can cause massive problems. One of the reasons I was so keen to get a formal diagnosis was because I'd go for job interviews, fail to get the job and in the feedback they invariably said that they didn't like that I didn't make eye contact. I've since been informed that not making eye contact at a job interview sends the message that you lack confidence, that you're hiding something/not being honest, etc, so they're not going to hire you. Or if you're not making eye contact or looking at the person speaking, you're assumed to not be paying attention and they get upset with you.
For us, eye contact isn't necessary, and can actually be distracting and off-putting. It's a different way of doing things. Not a lesser way.
Wednesday 26 April 2017
30 Days of Autism Acceptance: Day 26
#30DaysofAutismAcceptance
Sorry this is short - for some reason I'm struggling to write today. As is often the case, with this month's posts, this is a topic I'm likely to return to at some other point.
Day 26:
Talk about echolalia and scripting. Do you use echolalia? What about scripting?
For a long time I didn't think I experienced echolalia (repetition of sounds/words, particularly those recently heard - ie. like an echo, hence the term), but thinking about it courtesy primarily of this prompt, I've realised that sometimes, I do it. Rarely, and certainly not obviously enough to be picked up on as something slightly unusual or odd, but I do do it. Growing up it was often words I'd not heard before, or rhythms that captivated my attention, or things I should have said when a conversation went wrong. These days I don't really do it as far as I'm aware, although I probably still do it a bit when I'm tired and/or stressed. For my friends who are reading these posts, have you ever noticed me being echolalic? If so, under what circumstances? I'm genuinely curious!
Scripting, on the other hand, has always been a constant with me and something I do quite a bit. I do it for a lot of things, especially things that come up in conversation on multiple occasions. Once I start I can't stop, it's word-for-word every time (for some, Gideon can recite my script word-for-word too, it's occurred so often...!) and if you interrupt me, it throws me so much I completely lose track of my point, where I was going with it, the entire conversation. Please don't interrupt me (unless there's some sort of danger or somesuch) and if you've heard it a dozen times before, please just bear with me and be patient. I get that it can be boring if you've heard it loads of times before, but it's not something I have much control over and it's just something I do because I'm autistic. There's also the use of certain phrases that I've picked up from books, films, etc that seem appropriate to the conversation and I don't always realise I'm doing it. In reality they don't always quite fit but in my head they do!
There's so much more on this subject and it's something I'd like to explore further, but as I said above, my brain doesn't seem to want to work very well today so I'm going to have to call it at this point for today. Apologies!
Sorry this is short - for some reason I'm struggling to write today. As is often the case, with this month's posts, this is a topic I'm likely to return to at some other point.
Day 26:
Talk about echolalia and scripting. Do you use echolalia? What about scripting?
For a long time I didn't think I experienced echolalia (repetition of sounds/words, particularly those recently heard - ie. like an echo, hence the term), but thinking about it courtesy primarily of this prompt, I've realised that sometimes, I do it. Rarely, and certainly not obviously enough to be picked up on as something slightly unusual or odd, but I do do it. Growing up it was often words I'd not heard before, or rhythms that captivated my attention, or things I should have said when a conversation went wrong. These days I don't really do it as far as I'm aware, although I probably still do it a bit when I'm tired and/or stressed. For my friends who are reading these posts, have you ever noticed me being echolalic? If so, under what circumstances? I'm genuinely curious!
Scripting, on the other hand, has always been a constant with me and something I do quite a bit. I do it for a lot of things, especially things that come up in conversation on multiple occasions. Once I start I can't stop, it's word-for-word every time (for some, Gideon can recite my script word-for-word too, it's occurred so often...!) and if you interrupt me, it throws me so much I completely lose track of my point, where I was going with it, the entire conversation. Please don't interrupt me (unless there's some sort of danger or somesuch) and if you've heard it a dozen times before, please just bear with me and be patient. I get that it can be boring if you've heard it loads of times before, but it's not something I have much control over and it's just something I do because I'm autistic. There's also the use of certain phrases that I've picked up from books, films, etc that seem appropriate to the conversation and I don't always realise I'm doing it. In reality they don't always quite fit but in my head they do!
There's so much more on this subject and it's something I'd like to explore further, but as I said above, my brain doesn't seem to want to work very well today so I'm going to have to call it at this point for today. Apologies!
Tuesday 25 April 2017
30 Days of Autism Acceptance: Day 25
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Day 25:
Talk about meltdowns/shutdowns. Do you have them? How often? What are your triggers?
I'm more prone to meltdowns than shutdowns, I think. These days I don't have either at any great frequency, probably one every few months or so, although it does depend on situations.
When I have a meltdown, I tend to slap my hands over my ears, rock back and forth, screech, hit myself repeatedly against a surface (sometimes something hard, like a wall, sometimes something soft, like cushions; it depends on what's to hand) and, if I'm not screeching, yell and rant a lot. It looks like a tantrum but I cannot reinforce this enough: an autistic meltdown is nothing like a temper-tantrum. I'm not doing it to manipulate or to get what I want; I'm doing it because I cannot cope, and it is not something I have any control over. They strike when I can't cope any more and I have no practical way of getting it out of my system; the hands-over-ears and screeching is more likely to occur if I'm in a situation of sensory overload, particularly if it's overwhelming noise - I think I try to drown out the unbearable noises, lights, etc by making my own noises and shutting out sound (hands over ears) and light (eyes screwed up).
When I have a shutdown, I just sit or stand (this one depends on how co-operative my legs are being!) there. I can't think, I can't process anything, I can't speak, I can't communicate at all, I don't move.
Triggers tend to be stress, overwhelming frustration, sensory overload, overwhelming confusion, complete lack of information about something, too many options with no clear-cut path, too many demands made of me, not having downtime (ie. being somewhere on my own - though I can generally accept Gideon into that space - to get away from people to de-stress from the stresses of socialisation) and certain lights/noises. If I remember anything else later, I'll come back and edit this post.
If I'm having a meltdown, I need to be removed from the situation I'm in if it's been triggered by sensory overload - if I've got to the point where I'm in meltdown I am no longer capable of removing myself from that situation so this is the one occasion where you're allowed to touch my wheelchair without permission; just grab it and get me out of there, please! Take me somewhere that's quiet and the lighting is low. However, please don't touch me because I don't have much control, if any, over my actions and if the meltdown has been caused by sensory overload, it's more sensory input and I can't cope with that at this point.
If I'm having meltdown caused by one of the other things, again, don't touch me. I know it can be distressing to watch, but don't try to talk me down - I need to get it out of my system. If you can do anything to maximise safety and minimise harm, such as giving me cushion, that's perfectly allowed. Once I've worn myself out, once I've got it out of my system, then I'm OK to be touched and talked to.
If I'm having a shutdown, don't expect me to respond. Just keep me company and wait it out.
Day 25:
Talk about meltdowns/shutdowns. Do you have them? How often? What are your triggers?
I'm more prone to meltdowns than shutdowns, I think. These days I don't have either at any great frequency, probably one every few months or so, although it does depend on situations.
When I have a meltdown, I tend to slap my hands over my ears, rock back and forth, screech, hit myself repeatedly against a surface (sometimes something hard, like a wall, sometimes something soft, like cushions; it depends on what's to hand) and, if I'm not screeching, yell and rant a lot. It looks like a tantrum but I cannot reinforce this enough: an autistic meltdown is nothing like a temper-tantrum. I'm not doing it to manipulate or to get what I want; I'm doing it because I cannot cope, and it is not something I have any control over. They strike when I can't cope any more and I have no practical way of getting it out of my system; the hands-over-ears and screeching is more likely to occur if I'm in a situation of sensory overload, particularly if it's overwhelming noise - I think I try to drown out the unbearable noises, lights, etc by making my own noises and shutting out sound (hands over ears) and light (eyes screwed up).
When I have a shutdown, I just sit or stand (this one depends on how co-operative my legs are being!) there. I can't think, I can't process anything, I can't speak, I can't communicate at all, I don't move.
Triggers tend to be stress, overwhelming frustration, sensory overload, overwhelming confusion, complete lack of information about something, too many options with no clear-cut path, too many demands made of me, not having downtime (ie. being somewhere on my own - though I can generally accept Gideon into that space - to get away from people to de-stress from the stresses of socialisation) and certain lights/noises. If I remember anything else later, I'll come back and edit this post.
If I'm having a meltdown, I need to be removed from the situation I'm in if it's been triggered by sensory overload - if I've got to the point where I'm in meltdown I am no longer capable of removing myself from that situation so this is the one occasion where you're allowed to touch my wheelchair without permission; just grab it and get me out of there, please! Take me somewhere that's quiet and the lighting is low. However, please don't touch me because I don't have much control, if any, over my actions and if the meltdown has been caused by sensory overload, it's more sensory input and I can't cope with that at this point.
If I'm having meltdown caused by one of the other things, again, don't touch me. I know it can be distressing to watch, but don't try to talk me down - I need to get it out of my system. If you can do anything to maximise safety and minimise harm, such as giving me cushion, that's perfectly allowed. Once I've worn myself out, once I've got it out of my system, then I'm OK to be touched and talked to.
If I'm having a shutdown, don't expect me to respond. Just keep me company and wait it out.
Monday 24 April 2017
30 Days of Autism Acceptance: Day 24
#30DaysofAutismAcceptance
Day 24:
Talk about the stereotypes and misconceptions that neurotypicals and allistics have. What stereotypes have you heard about autism? How do you respond to people who have incorrect stereotypes about autism? What kind of things should people not say to autistic people? What’s something you wish NTs/allistics knew about autism?
I really want reader responses to this one! (I always appreciate comments, but especially for this one.)
There are SO MANY stereotypes out there that it's impossible for me to comprehensively collate them here. This is actually a long-term project of mine, because my one of my long-term goals is to write a book called "Not All Aspies Are Computer Geeks" (though I'm not sure if I'll use "Aspies" or "Autistics" - what do you readers think?); it will look at the various stereotypes and preconceptions, a) how and why they came to be, and b) how true they are. Please do comment with any and every stereotype, preconception, etc you've come across, and if you've encountered them online, I'd really appreciate it if you could add the link (so I can reference them).
As usual, this is more an introductory post to this topic; I'll be examining each of them in more detail in the future.
Here's a brief list of some of the most common ones I've come across (in no particular order):
Of the stereotypes that exist, some are harmless and can be (if one is cautious) be used as a guide in steering someone towards a diagnosis (such as unusual special interests, echolalia (repetition of speech/sounds) and lack of eye contact). Others can be beneficial when used in the right way and without being over-emphasised, such as encouraging a special interest that can lead to a career.
But many stereotypes, however well-meaning, are actively harmful and limiting. On quite a few occasions now, on Facebook I've seen or by friends have been linked to articles about companies that are specifically looking to hire autistics - which initially sounds great, but these companies are invariably computer- and technology-centric; I've never seen any in the arts and creative sector. It perpetuates the notion that autistics are all computer- and technology- skilled whizzes, and that just isn't me, by any stretch of the imagination. My BA is English Lit and my MA is Creative Writing - does that sound like someone who's going to be successfully recruited into computing and technology??? Such recruitment drives are completely useless to me and other autistics like me. As for the romantic-relationships one, there are many autistics in happy, loving relationships and marriages!
And the ones that invalidate our diagnosis and our neurology are actively harmful and problematic, such as the myth that only males are autistic, that if you can speak/hold down a job/have a successful romantic relationship you're not actually autistic, that it's not a real condition but the result of bad parenting (my mother has been a damn good parent, thank you very much, and it's an insult to the many mothers and fathers of autistics) and so on.
Overall, stereotypes don't really do anyone any good. They're far too restrictive and don't take into account how diverse we are - there's a reason it's referred to as a spectrum! They limit people's understanding and reinforce the "you can't be autistic because..." and "you're Not Like My Child".
When it comes to incorrect stereotypes I do my best to educate. There's no point attacking someone for having a false stereotype because they're far less likely to listen if they feel they've been put on the defensive, and it's often a case that they've not had good sources about autism. What we need to do is explain that that stereotype is wrong/misguided, why that is so, and educate them about the truth. We can also encourage them to go to accurate sources for further information. It's about education and demonstrating that there are plenty of positives to being autistic, and doing it all in a positive, accepting way.
As for the things people shouldn't say to autistics, here's a list of some of them for ease of reference
S#!T Ignorant People Say To Autistics
Basically, don't say stuff that panders to narrow stereotypes, don't tell us how we should identify and what type of language we should use when referring to ourselves (and DON'T 'correct' us), don't question our diagnosis (many of us have been through a long, rigorous and thorough assessment process to determine whether or not we're autistic, devised by people who know far more about it than you probably do and don't presume incompetence.
Is there anything else you readers have come across or that you're not sure if you should say to an autistic?
What do I wish NTs/allistics knew about autism? So many things! Here's a list of the key things (sorry it's another list!):
Day 24:
Talk about the stereotypes and misconceptions that neurotypicals and allistics have. What stereotypes have you heard about autism? How do you respond to people who have incorrect stereotypes about autism? What kind of things should people not say to autistic people? What’s something you wish NTs/allistics knew about autism?
I really want reader responses to this one! (I always appreciate comments, but especially for this one.)
There are SO MANY stereotypes out there that it's impossible for me to comprehensively collate them here. This is actually a long-term project of mine, because my one of my long-term goals is to write a book called "Not All Aspies Are Computer Geeks" (though I'm not sure if I'll use "Aspies" or "Autistics" - what do you readers think?); it will look at the various stereotypes and preconceptions, a) how and why they came to be, and b) how true they are. Please do comment with any and every stereotype, preconception, etc you've come across, and if you've encountered them online, I'd really appreciate it if you could add the link (so I can reference them).
As usual, this is more an introductory post to this topic; I'll be examining each of them in more detail in the future.
Here's a brief list of some of the most common ones I've come across (in no particular order):
- don't make eye contact
- rude/tactless
- selfish/self-centred
- "too high-functioning to really be autistic"/"you're not that autistic" (ie. you're lying/faking)
- if you're Not Like My Child (ie. high-support, non-speaking, etc) you can't possibly be autistic
- only males can be autistic/Aspie (this comment is more with "Asperger's" than "autism")
- don't/can't speak, constantly rock/flap/screech/etc
- all maths/science/computer experts
- all savants like Rain Man or some sort of genius
- we all know each other
- we'll be "just like" their brother/sister/cousin/whatever who's autistic
- spiritual
- don't have any empathy
- aren't creative
- autism doesn't really exist, it's just bad parenting
- it can be cured
- violent - particularly associated with school shootings in the US
- can't have successful romantic relationships
- can't get and hold down a job
- poor social skills
- obsessive
- particular gait/posture
- can't understand/use sarcasm
Of the stereotypes that exist, some are harmless and can be (if one is cautious) be used as a guide in steering someone towards a diagnosis (such as unusual special interests, echolalia (repetition of speech/sounds) and lack of eye contact). Others can be beneficial when used in the right way and without being over-emphasised, such as encouraging a special interest that can lead to a career.
But many stereotypes, however well-meaning, are actively harmful and limiting. On quite a few occasions now, on Facebook I've seen or by friends have been linked to articles about companies that are specifically looking to hire autistics - which initially sounds great, but these companies are invariably computer- and technology-centric; I've never seen any in the arts and creative sector. It perpetuates the notion that autistics are all computer- and technology- skilled whizzes, and that just isn't me, by any stretch of the imagination. My BA is English Lit and my MA is Creative Writing - does that sound like someone who's going to be successfully recruited into computing and technology??? Such recruitment drives are completely useless to me and other autistics like me. As for the romantic-relationships one, there are many autistics in happy, loving relationships and marriages!
And the ones that invalidate our diagnosis and our neurology are actively harmful and problematic, such as the myth that only males are autistic, that if you can speak/hold down a job/have a successful romantic relationship you're not actually autistic, that it's not a real condition but the result of bad parenting (my mother has been a damn good parent, thank you very much, and it's an insult to the many mothers and fathers of autistics) and so on.
Overall, stereotypes don't really do anyone any good. They're far too restrictive and don't take into account how diverse we are - there's a reason it's referred to as a spectrum! They limit people's understanding and reinforce the "you can't be autistic because..." and "you're Not Like My Child".
When it comes to incorrect stereotypes I do my best to educate. There's no point attacking someone for having a false stereotype because they're far less likely to listen if they feel they've been put on the defensive, and it's often a case that they've not had good sources about autism. What we need to do is explain that that stereotype is wrong/misguided, why that is so, and educate them about the truth. We can also encourage them to go to accurate sources for further information. It's about education and demonstrating that there are plenty of positives to being autistic, and doing it all in a positive, accepting way.
As for the things people shouldn't say to autistics, here's a list of some of them for ease of reference
- I thought you were all computer geeks
- But you don't look autistic...
- You're not like my child
- Are you sure you're autistic?
- But you can speak...
- Your social skills are really good for someone with autism
- YOU MUST SAY "PERSON WITH AUTISM", NOT "AUTISTIC"
- Have you tried [insert unproven pseudoscientific alternative treatment]...?
- Have you seen Big Bange Theory/Rain Man/etc?
- What's your special talent?
- Labels are for food, not people
- You are more than your diagnosis/You mustn't let your autism define you
- You'll grow out of your autism
- Is your parent/carer with you?/Is s/he your sister/brother/paid carer? (There have been several occasions when people have assumed that Gideon is my sibling or paid carer and are really shocked that he's my boyfriend/fiancé/husband (delete as apprpriate depending on whether it was Sept 2010-April 2015, April-Nov 2015 or post-Nov 2015).
- Autism $peaks says...
- I'm Lighting It Up Blue for autism awareness this April; will you join me? (Or anything else associated with A$.)
- There's no such thing as bad autism awareness
- You should just get your butts out of the house and get a job (from Temple Grandin herself, speaking from a position of white upper-class privilege, and it's a number of statements like this that are why a lot of younger autistics such as Amy Sequenzia have very little time or respect for her)
S#!T Ignorant People Say To Autistics
Basically, don't say stuff that panders to narrow stereotypes, don't tell us how we should identify and what type of language we should use when referring to ourselves (and DON'T 'correct' us), don't question our diagnosis (many of us have been through a long, rigorous and thorough assessment process to determine whether or not we're autistic, devised by people who know far more about it than you probably do and don't presume incompetence.
Is there anything else you readers have come across or that you're not sure if you should say to an autistic?
What do I wish NTs/allistics knew about autism? So many things! Here's a list of the key things (sorry it's another list!):
- we're as diverse as you in our abilities, interests, skills, areas of expertise, etc: when you've met one autistic person, you've met one autistic person
- it affects different people in different ways (for some of my friends, they're unable to drive because of aspects of their autism, whereas others of us are perfectly competent drivers)
- we need you to be patient with us sometimes because we don't experience the world in the same way as you do and it can be overwhelming
- we need you to meet us as we are, not force us to conform to NT ideals
- when we ask for adjustments/accommodations we genuinely need them
- we are prone to anxiety so when we ask for things like prior warning/advance notice, it can be really detrimental if we don't have it
- we may have to drop out of social activities at the last minute because being around people can be really exhausting and we need alone time to decompress
- autism doesn't make us less human
- it is NOT caused by vaccines/bad parenting/"chemicals"/"toxins"/etc - it's caused by genetics
- it's not the autism that causes comorbid mental health issues, it's circumstances, environment, etc
- you can't separate the person from the autism.
Sunday 23 April 2017
30 Days of Autism Acceptance: Day 23
#30DaysofAutismAcceptance
Day 23:
Talk about your living situation. Where do you live? Do you live alone or with other people? Are you happy with your current living arrangements?
This is a short post because the answers are simple and short. I currently live in Exeter, Devon (southwest England) - I originally moved down in September 2006 for university and apart from a period of 15 months between July 2009 and September 2010 when I moved back to my parents', I've lived here ever since.
I live in a privately-rented 2-bedroom ground-floor flat with Gideon, my husband. I moved here 3 1/2 years ago in December 2013, as the house-share I was in beforehand split when Jeremy, one of my housemates (originally a uni friend and still someone I consider to be one of my best friends) got a job in Swindon, as commuting between Exeter and Swindon really isn't viable! I looked for one-bedroom ground-floor places but there were none that were suitable (there are so many "ground floor" places that have several steps up or down to them, it's ridiculous!) This place is ideal for a wheelchair-user - although I can walk a little bit I need somewhere I can simply roll into and out of if I'm having a really bad day. Our landlord is a great bloke - it's the only property he rents out (he originally bought it for his disabled mum, so the bathroom is a wet room, which is perfect for me!) Gideon moved down a week before Easter 2014. The Church teaches that you shouldn't really live together prior to marriage but that wasn't financially viable for us.
The little estate on which we live was originally a council estate and some of the properties are still council-owned. The city council still owns the actual buildings - including, we discovered last year, our front door! It's because it opens onto a communal area (the stairwell) so fire safety regulations mean that the council is responsible for ensuring doors are up to standard and so on. It's a lovely little estate and I really like it here. I've even got my own disabled parking space - when I moved in there was one painted on the road that wasn't in use, as it had belonged to a resident who's since moved away, so I started using it and the neighbours left it free for me, and last year the council repainted the disabled bays on the estate so I phoned up to get this one redone and now it's registered to me.
I'd love to own my own place one day and maybe eventually I will. But when you're chronically ill/disabled in this economy, finding employment is extremely difficult, so I suspect being a homeowner is quite a way away.
I'm happy enough with my current living situation.
Day 23:
Talk about your living situation. Where do you live? Do you live alone or with other people? Are you happy with your current living arrangements?
This is a short post because the answers are simple and short. I currently live in Exeter, Devon (southwest England) - I originally moved down in September 2006 for university and apart from a period of 15 months between July 2009 and September 2010 when I moved back to my parents', I've lived here ever since.
I live in a privately-rented 2-bedroom ground-floor flat with Gideon, my husband. I moved here 3 1/2 years ago in December 2013, as the house-share I was in beforehand split when Jeremy, one of my housemates (originally a uni friend and still someone I consider to be one of my best friends) got a job in Swindon, as commuting between Exeter and Swindon really isn't viable! I looked for one-bedroom ground-floor places but there were none that were suitable (there are so many "ground floor" places that have several steps up or down to them, it's ridiculous!) This place is ideal for a wheelchair-user - although I can walk a little bit I need somewhere I can simply roll into and out of if I'm having a really bad day. Our landlord is a great bloke - it's the only property he rents out (he originally bought it for his disabled mum, so the bathroom is a wet room, which is perfect for me!) Gideon moved down a week before Easter 2014. The Church teaches that you shouldn't really live together prior to marriage but that wasn't financially viable for us.
The little estate on which we live was originally a council estate and some of the properties are still council-owned. The city council still owns the actual buildings - including, we discovered last year, our front door! It's because it opens onto a communal area (the stairwell) so fire safety regulations mean that the council is responsible for ensuring doors are up to standard and so on. It's a lovely little estate and I really like it here. I've even got my own disabled parking space - when I moved in there was one painted on the road that wasn't in use, as it had belonged to a resident who's since moved away, so I started using it and the neighbours left it free for me, and last year the council repainted the disabled bays on the estate so I phoned up to get this one redone and now it's registered to me.
I'd love to own my own place one day and maybe eventually I will. But when you're chronically ill/disabled in this economy, finding employment is extremely difficult, so I suspect being a homeowner is quite a way away.
I'm happy enough with my current living situation.
Saturday 22 April 2017
30 Days of Autism Acceptance: Day 22
#30DaysofAutismAcceptance
Day 22:
Talk about autism parents. How do you feel about this section of the community? Do you feel as if they speak over you? Do you find the term ‘autism parent’ rude or offensive?
Another massive, complex topic, and one I'll explore in more depth when I have more time, with links to key articles by Amy Sequenzia and in The Establishment but I'll use today's prompt as an introduction.
I'm not sure what the autistic community (autistic, rather than autism, community) as a whole feels about whether "autism parent" is an offensive term or not; that's something I'll have to look into.
I think there's a difference between autism parents and Autism (Warrior) Parents/Martyr Parents (MPs). Note the use of capitalisation. I've mentioned Autism Warrior Parents (AWPs) in previous posts and they are the ones that cause a lot of upset, anger, frustration, hurt and other similar feelings among autistics. (Martyr Parents is another term for AWPs.)
We cannot exclude autism parents from the conversation or the autism community, because they do have valuable input and they can really help in fighting for acceptance, services, support, etc. What upsets and frustrates me is that authorities and service-providers seem to often pay more attention to the parents/carers than actual autistics, and that needs to change. The autism parents who listen to us, who accept us, are very welcome in the community and we value their support, assistance and input. I have a friend with an autistic 12-year-old daughter and she's a good autism parent - she's not able to care for her daughter herself but she's done her best to ensure her daughter has the support and care she needs, accepts her for who she is and meets her where she is (such as using Makaton and BSL), connects with her in a way that her daughter can understand and latch on to, fights for more support if it's needed, and so on.
The problem lies with the AWPs and they are the ones I vehemently dislike. They are self-righteous, superior, arrogant, aggressive, rude, self-obsessed martyrs. They vastly overstep the mark and make their child's autism all about them. Guess what? It's NOT ABOUT YOU. It's about YOUR CHILD. So far I've given them a bit of a wide berth because on the occasions I have encountered them they are truly horrific, and with fibro and ME/CFS I simply don't have the energy (or, it has to be said, the patience or temper!) to deal with them. They're the ones who scream that YOU MUST STOP SAYING "AUTISTIC"; YOU MUST SAY "CHILD WITH AUTISM" (that's a direct quote from one post about Sesame Street's Julia on Facebook, complete with their use of capitals; I got screamed at by multiple AWPs for daring to question this and point out that actual autistics prefer identity-first language). They're the ones who shut down and silence actual autistics. They're the ones who think they know better about the autistic experience than actual autistics. They're the ones who presume incompetence. They're the ones who post in-depth blogs and articles about their child's most intimate care needs, including photos and videos, without that child's consent (they say the child wouldn't understand and/or wouldn't care, but they can't truly be sure and anyway, that is NOT your call to make), all in the name of "realism" - which apparently demolishes the autistic child or person's right to privacy.
(They're also much more likely to push the vaccines-and/or-toxins-cause-autism rubbish, unproven "treatments", harmful "treatments" like MMS, etc.)
They're the ones that accuse us of not really being autistic just because we can type and blog and speak because we are "Not Like MY Child". They speak about us without us. they speak over us and attempt to invalidate our experiences. If we try to say anything that might possibly, potentially be construed as criticism or that doesn't fit into their AWP narrative, they silence us - they scream at us, they attack us, they shut us down, they bully us. They're the ones who talk about us (usually in a negative way, things like we're the reason they can't do XYZ, we make their life so hard, we're so difficult, etc) when we are there in front of them but don't have a problem with it, don't think we might be upset by it, because they assume we can't understand anyway. We are less than human to them.
They are the ones who proclaim "I accept you but not your autism" - sorry, doesn't work that way; you cannot accept one but not the other because our autism is intrinsic to who we are and how we are. Saying this sends a powerful message that you hate the way we are, which ultimately means that you hate us, however much you may claim otherwise. They are the ones who are the reason why, when a parent murders an autistic child, the world at large sympathises with the parent and becomes apologists for them, because according to AWPs, we are nothing but a burden, a tragedy, something to be despised and got rid of. They are the ones who spend all their time and resources "fighting" and "battling" autism, when that time and those resources would be infinitely better used in getting to know your child and meeting them as they are, working with, rather than against, them and improving their life.
You don't get to co-opt your child's identity for your own. You don't get to publish things, especially intimate things like personal care needs, about us without our permission. You don't get to shut us down, silence us or speak over us. You don't get to presume incompetence. You don't get to accuse us of faking our autism or of "not being autistic enough". You don't get to attack us. You don't get to blame us for all your difficulties. You don't get to use us to garner attention, publicity, sympathy or pity - that's exploitative and abusive. You don't get to separate us from our autism. You don't get to be the martyr or the victim. Your voice about the autistic experience does NOT get precedence over the voices of autistic people.
Be an Autism Accepting Parent, not an Autism Warrior Parent.
Day 22:
Talk about autism parents. How do you feel about this section of the community? Do you feel as if they speak over you? Do you find the term ‘autism parent’ rude or offensive?
Another massive, complex topic, and one I'll explore in more depth when I have more time, with links to key articles by Amy Sequenzia and in The Establishment but I'll use today's prompt as an introduction.
I'm not sure what the autistic community (autistic, rather than autism, community) as a whole feels about whether "autism parent" is an offensive term or not; that's something I'll have to look into.
I think there's a difference between autism parents and Autism (Warrior) Parents/Martyr Parents (MPs). Note the use of capitalisation. I've mentioned Autism Warrior Parents (AWPs) in previous posts and they are the ones that cause a lot of upset, anger, frustration, hurt and other similar feelings among autistics. (Martyr Parents is another term for AWPs.)
We cannot exclude autism parents from the conversation or the autism community, because they do have valuable input and they can really help in fighting for acceptance, services, support, etc. What upsets and frustrates me is that authorities and service-providers seem to often pay more attention to the parents/carers than actual autistics, and that needs to change. The autism parents who listen to us, who accept us, are very welcome in the community and we value their support, assistance and input. I have a friend with an autistic 12-year-old daughter and she's a good autism parent - she's not able to care for her daughter herself but she's done her best to ensure her daughter has the support and care she needs, accepts her for who she is and meets her where she is (such as using Makaton and BSL), connects with her in a way that her daughter can understand and latch on to, fights for more support if it's needed, and so on.
The problem lies with the AWPs and they are the ones I vehemently dislike. They are self-righteous, superior, arrogant, aggressive, rude, self-obsessed martyrs. They vastly overstep the mark and make their child's autism all about them. Guess what? It's NOT ABOUT YOU. It's about YOUR CHILD. So far I've given them a bit of a wide berth because on the occasions I have encountered them they are truly horrific, and with fibro and ME/CFS I simply don't have the energy (or, it has to be said, the patience or temper!) to deal with them. They're the ones who scream that YOU MUST STOP SAYING "AUTISTIC"; YOU MUST SAY "CHILD WITH AUTISM" (that's a direct quote from one post about Sesame Street's Julia on Facebook, complete with their use of capitals; I got screamed at by multiple AWPs for daring to question this and point out that actual autistics prefer identity-first language). They're the ones who shut down and silence actual autistics. They're the ones who think they know better about the autistic experience than actual autistics. They're the ones who presume incompetence. They're the ones who post in-depth blogs and articles about their child's most intimate care needs, including photos and videos, without that child's consent (they say the child wouldn't understand and/or wouldn't care, but they can't truly be sure and anyway, that is NOT your call to make), all in the name of "realism" - which apparently demolishes the autistic child or person's right to privacy.
(They're also much more likely to push the vaccines-and/or-toxins-cause-autism rubbish, unproven "treatments", harmful "treatments" like MMS, etc.)
They're the ones that accuse us of not really being autistic just because we can type and blog and speak because we are "Not Like MY Child". They speak about us without us. they speak over us and attempt to invalidate our experiences. If we try to say anything that might possibly, potentially be construed as criticism or that doesn't fit into their AWP narrative, they silence us - they scream at us, they attack us, they shut us down, they bully us. They're the ones who talk about us (usually in a negative way, things like we're the reason they can't do XYZ, we make their life so hard, we're so difficult, etc) when we are there in front of them but don't have a problem with it, don't think we might be upset by it, because they assume we can't understand anyway. We are less than human to them.
They are the ones who proclaim "I accept you but not your autism" - sorry, doesn't work that way; you cannot accept one but not the other because our autism is intrinsic to who we are and how we are. Saying this sends a powerful message that you hate the way we are, which ultimately means that you hate us, however much you may claim otherwise. They are the ones who are the reason why, when a parent murders an autistic child, the world at large sympathises with the parent and becomes apologists for them, because according to AWPs, we are nothing but a burden, a tragedy, something to be despised and got rid of. They are the ones who spend all their time and resources "fighting" and "battling" autism, when that time and those resources would be infinitely better used in getting to know your child and meeting them as they are, working with, rather than against, them and improving their life.
You don't get to co-opt your child's identity for your own. You don't get to publish things, especially intimate things like personal care needs, about us without our permission. You don't get to shut us down, silence us or speak over us. You don't get to presume incompetence. You don't get to accuse us of faking our autism or of "not being autistic enough". You don't get to attack us. You don't get to blame us for all your difficulties. You don't get to use us to garner attention, publicity, sympathy or pity - that's exploitative and abusive. You don't get to separate us from our autism. You don't get to be the martyr or the victim. Your voice about the autistic experience does NOT get precedence over the voices of autistic people.
Be an Autism Accepting Parent, not an Autism Warrior Parent.
Friday 21 April 2017
30 Days of Autism Acceptance: Day 21
#30DaysofAutismAcceptance
Day 21:
Talk about comorbid conditions. Do you have any other disorders commonly related to autism? Were you misdiagnosed as something else first?
I would like to note right here that this post involves discussion of mental-health issues, which neither of my parents know about or would understand (although Dad's got a Facebook account he doesn't have any idea how to use it and so is rarely on there) but a couple of my extended family members are on Facebook (I'm sharing these posts there) and so Liz, Sarah, if you're reading this, I'd appreciate it if you could maintain that state! They don't know and they really wouldn't understand it anyway.
I have a very long history of depression; I've been battling it since I was about 13 and it was pretty bad for a long time. In more recent years it's been an on-again-off-again thing rather than a constant, which is some relief. The official diagnosis was "reactive depression" - ie. my situation and surroundings causing it, rather than it being some sort of endemic thing. I was a complete social outcast at school and girls can be incredibly bitchy and subtle in their bullying (I went to an all-girls school) and because I was weird, odd, different, etc, I was an easy target. I think the incident that really nailed home just how excluded and outcast I was happened in Year 11 (5th year, in Harry Potter-speak). My birthday is October 22nd; Hayley in my form has her birthday on the 23rd and Isobel the 24th. Some of the popular Queen-Bee-type girls had made a massive sign that they put up in our form room that read "Happy birthday Hayley and Isobel!!!" In the bottom right-hand corner someone (probably Naomi or Claire, though if I recall correctly, I think it was in Naomi's handwriting) had squashed in "and Katherine!"
I had a reprieve for a few years when I went to Exeter - I finally found people who accepted me for my quirky weirdness, among the folkies and the geeks, which makes perfect sense! I've got a really good bunch of friends now and I'm so thankful for them.
In more recent times we think the depression is back, though on a much lower level, mainly because of the constant stress and fear caused by the DWP and their completely unfirt-for-purpose Work Capability Assessments and PIP.
I've never been assessed for or diagnosed with an anxiety disorder, although sometimes I think there's probably a degree of it lurking under the surface.
I definitely have OCD issues, probably from being autistic, although those only flare up when I'm really stressed. I've never been formalyl diagnosed with OCD but in the past I probably would have been. And I'm not doing the "everyone's a bit OCD" because that line REALLY annoys me, same as the people who claim "we're all a little autistic" (no, we are NOT - this will be discussed at another time because it's one I want to investigate and explore in more detail, but the bottom line is that MRIs and so on are demonstrating a clear difference in thinking between autistics and non-autistics).
My biggest OCD issue used to be not stepping on cracks in the pavement. If I did accidentally do so with one foot, I had to step on the very next crack if I was going to rebalance and ensure everything would be OK; if I didn't, indeterminate and unspecified Bad Stuff would happen. The definition of "cracks" included the joins between paving slabs. The really small brick-type paving was (thankfully) excluded from this because it was often perpendicular to the direction my feet were going and because they were too small for my feet to fit within the boundaries (though occasionally when my stress and anxiety levels were really high I had to avoid those cracks as well, which meant going on tiptoes. Not the easiest to do and really awkward to explain! But if I got too stressed and/or stepped on too many cracks, I'd have to hurry back to the beginning (and I had to hurry, to minimise the chances of the Bad Stuff happening; the longer I left it the worse it would be) and start all over again. Multiple times, if necessary. It was pretty horrible. It's something I had a massive mental battle with when I first became a wheelchair user because you cannot avoid the cracks in a chair. It gave me physical shudders at first but I've had to force it down and now it isn't a psychological issue any more. I still pay reasonably close attention to pavement cracks because they sometimes stick up so there's the potential for my front castors to hit them and catapult me out - which would be rather painful and messy!
I like things to be in fives. Two on each side and one down the middle. I have no idea why five; possibly because it was always Mum's number when she played volleyball and basketball. I have to balance things - if I brush the back of my left hand against something, I need to brush the back of my right hand against it ASAP, for example. If I can't and I lose the balance, I get stressed. I've got it much more under control now but it's always lurking.
I wouldn't say I was "misdiagnosed" at any point, just that I wasn't fully diagnosed. I know other autistics have been misdiagnosed with bipolar, schizophrenia and other conditions before someone eventually went, Hang on, they're not bipolar/schizophrenic/etc, they're autistic! That's got to be pretty rough.
I do wish I'd been picked up at a much earlier age than 28, because it would in all likelihood have saved me a lot of confusion, frustration and difficulty. This is all-too-common among female autistics, which is one reason I'm speaking out, particularly through this blog. I don't want others to go through what I went through, to feel odd or different but not know why. I want my autistic sisters to be identified, understood and accepted; I don't want them to have to suffer.
Day 21:
Talk about comorbid conditions. Do you have any other disorders commonly related to autism? Were you misdiagnosed as something else first?
I would like to note right here that this post involves discussion of mental-health issues, which neither of my parents know about or would understand (although Dad's got a Facebook account he doesn't have any idea how to use it and so is rarely on there) but a couple of my extended family members are on Facebook (I'm sharing these posts there) and so Liz, Sarah, if you're reading this, I'd appreciate it if you could maintain that state! They don't know and they really wouldn't understand it anyway.
I have a very long history of depression; I've been battling it since I was about 13 and it was pretty bad for a long time. In more recent years it's been an on-again-off-again thing rather than a constant, which is some relief. The official diagnosis was "reactive depression" - ie. my situation and surroundings causing it, rather than it being some sort of endemic thing. I was a complete social outcast at school and girls can be incredibly bitchy and subtle in their bullying (I went to an all-girls school) and because I was weird, odd, different, etc, I was an easy target. I think the incident that really nailed home just how excluded and outcast I was happened in Year 11 (5th year, in Harry Potter-speak). My birthday is October 22nd; Hayley in my form has her birthday on the 23rd and Isobel the 24th. Some of the popular Queen-Bee-type girls had made a massive sign that they put up in our form room that read "Happy birthday Hayley and Isobel!!!" In the bottom right-hand corner someone (probably Naomi or Claire, though if I recall correctly, I think it was in Naomi's handwriting) had squashed in "and Katherine!"
I had a reprieve for a few years when I went to Exeter - I finally found people who accepted me for my quirky weirdness, among the folkies and the geeks, which makes perfect sense! I've got a really good bunch of friends now and I'm so thankful for them.
In more recent times we think the depression is back, though on a much lower level, mainly because of the constant stress and fear caused by the DWP and their completely unfirt-for-purpose Work Capability Assessments and PIP.
I've never been assessed for or diagnosed with an anxiety disorder, although sometimes I think there's probably a degree of it lurking under the surface.
I definitely have OCD issues, probably from being autistic, although those only flare up when I'm really stressed. I've never been formalyl diagnosed with OCD but in the past I probably would have been. And I'm not doing the "everyone's a bit OCD" because that line REALLY annoys me, same as the people who claim "we're all a little autistic" (no, we are NOT - this will be discussed at another time because it's one I want to investigate and explore in more detail, but the bottom line is that MRIs and so on are demonstrating a clear difference in thinking between autistics and non-autistics).
My biggest OCD issue used to be not stepping on cracks in the pavement. If I did accidentally do so with one foot, I had to step on the very next crack if I was going to rebalance and ensure everything would be OK; if I didn't, indeterminate and unspecified Bad Stuff would happen. The definition of "cracks" included the joins between paving slabs. The really small brick-type paving was (thankfully) excluded from this because it was often perpendicular to the direction my feet were going and because they were too small for my feet to fit within the boundaries (though occasionally when my stress and anxiety levels were really high I had to avoid those cracks as well, which meant going on tiptoes. Not the easiest to do and really awkward to explain! But if I got too stressed and/or stepped on too many cracks, I'd have to hurry back to the beginning (and I had to hurry, to minimise the chances of the Bad Stuff happening; the longer I left it the worse it would be) and start all over again. Multiple times, if necessary. It was pretty horrible. It's something I had a massive mental battle with when I first became a wheelchair user because you cannot avoid the cracks in a chair. It gave me physical shudders at first but I've had to force it down and now it isn't a psychological issue any more. I still pay reasonably close attention to pavement cracks because they sometimes stick up so there's the potential for my front castors to hit them and catapult me out - which would be rather painful and messy!
I like things to be in fives. Two on each side and one down the middle. I have no idea why five; possibly because it was always Mum's number when she played volleyball and basketball. I have to balance things - if I brush the back of my left hand against something, I need to brush the back of my right hand against it ASAP, for example. If I can't and I lose the balance, I get stressed. I've got it much more under control now but it's always lurking.
I wouldn't say I was "misdiagnosed" at any point, just that I wasn't fully diagnosed. I know other autistics have been misdiagnosed with bipolar, schizophrenia and other conditions before someone eventually went, Hang on, they're not bipolar/schizophrenic/etc, they're autistic! That's got to be pretty rough.
I do wish I'd been picked up at a much earlier age than 28, because it would in all likelihood have saved me a lot of confusion, frustration and difficulty. This is all-too-common among female autistics, which is one reason I'm speaking out, particularly through this blog. I don't want others to go through what I went through, to feel odd or different but not know why. I want my autistic sisters to be identified, understood and accepted; I don't want them to have to suffer.
Thursday 20 April 2017
30 Days of Autism Acceptance: Day 20
#30DaysofAutismAcceptance
Day 20:
Talk about communication. Are you verbal? Nonverbal? Partially verbal? How do you usually communicate?
First of all, I'm not going to use the terms "verbal", "nonverbal" or "partially verbal"; I'm going to use "speaking" instead of "verbal".
Why? Because it's the preferred term by autistics like Amy Sequenzia and others. And we should go by what they prefer because that's their reality. To do otherwise is disrespectful and silencing.
Some might say I am and they are being pedantic, that it doesn't matter. Actually, it does. It's more than just semantic pedantry - it's simply accurate. We don't use "wheelchair-bound" any more, we use "wheelchair user". The former suggests that the person is physically bonded to their chair - which simply isn't true! - and even if it's not taken that way, the term assumes complete inability to stand or walk, which is only true for a minority of chair users. I'm a wheelchair user but I do have some ability to stand and walk. Only for a very brief period and I can only hobble/stumble a few metres on a good day (on a bad day I can't stand or walk at all), but even then I use a walking stick, the walls, furniture and people. The term "wheelchair user" is simply more accurate.
So why use "speaking" and "non-speaking"? Because the use of the term "verbal" suggests possession of language and the use of the term "nonverbal" suggests an absence of language. As Amy Sequenzia, Carly Fleischmann and others have demonstrated, that's just not the case! Communication through typing is verbal just as much as communicating through speech. They have the language, they just don't communicate through speech. They still communicate through words. Other autistics use picture boards, cards and other alternative and assistive communicative (AAC) methods. They are all "verbal" people, they just don't speak. "Speaking" and "non-speaking" reflects greater accuracy of communication methods.
I am speaking, the vast majority of the time, so I'd probably be classed as speaking, though I don't know if my occasional difficulties would technically label me as "partially speaking". I usually communicate through speaking (and obviously writing), but as I've mentioned in previous posts, I also use British Sign Language and the communication cards from Stickman Communications that my friend Hannah makes (they're fantastic) - she's got a whole range for many different conditions, including autism, and she does packs that include all the relevant ones for specific conditions/situations (diabetes, wheelchair, autism, etc). They are SO USEFUL! If you experience spoken communication difficulties, I highly recommend them (I'm not just plugging them because it's my friend's business, I'm plugging them because they are SO DAMN USEFUL!)
I favour typing because it gives me the opportunity to think about what I'm saying and ensure that my meaning, points, etc are accurately conveyed. It allows me more processing time than face-to-face conversations, which generally demand immediate responses, which is stressful. I often stumble over my words, especially when I'm stressed and/or tired. I long ago lost count of how many times my spoken words have got people angry, upset, etc when it really wasn't my intention and I've been grossly misunderstood because I haven't been able to articulate myself properly.
So I'd probably describe myself as mostly-speaking - I don't think that the term "speaking" is entirely applicable to me because of what I've said above. "Partially speaking" suggests that my ability to communicate through speech is lower than it is. So I'd go with "mostly speaking".
Day 20:
Talk about communication. Are you verbal? Nonverbal? Partially verbal? How do you usually communicate?
First of all, I'm not going to use the terms "verbal", "nonverbal" or "partially verbal"; I'm going to use "speaking" instead of "verbal".
Why? Because it's the preferred term by autistics like Amy Sequenzia and others. And we should go by what they prefer because that's their reality. To do otherwise is disrespectful and silencing.
Some might say I am and they are being pedantic, that it doesn't matter. Actually, it does. It's more than just semantic pedantry - it's simply accurate. We don't use "wheelchair-bound" any more, we use "wheelchair user". The former suggests that the person is physically bonded to their chair - which simply isn't true! - and even if it's not taken that way, the term assumes complete inability to stand or walk, which is only true for a minority of chair users. I'm a wheelchair user but I do have some ability to stand and walk. Only for a very brief period and I can only hobble/stumble a few metres on a good day (on a bad day I can't stand or walk at all), but even then I use a walking stick, the walls, furniture and people. The term "wheelchair user" is simply more accurate.
So why use "speaking" and "non-speaking"? Because the use of the term "verbal" suggests possession of language and the use of the term "nonverbal" suggests an absence of language. As Amy Sequenzia, Carly Fleischmann and others have demonstrated, that's just not the case! Communication through typing is verbal just as much as communicating through speech. They have the language, they just don't communicate through speech. They still communicate through words. Other autistics use picture boards, cards and other alternative and assistive communicative (AAC) methods. They are all "verbal" people, they just don't speak. "Speaking" and "non-speaking" reflects greater accuracy of communication methods.
I am speaking, the vast majority of the time, so I'd probably be classed as speaking, though I don't know if my occasional difficulties would technically label me as "partially speaking". I usually communicate through speaking (and obviously writing), but as I've mentioned in previous posts, I also use British Sign Language and the communication cards from Stickman Communications that my friend Hannah makes (they're fantastic) - she's got a whole range for many different conditions, including autism, and she does packs that include all the relevant ones for specific conditions/situations (diabetes, wheelchair, autism, etc). They are SO USEFUL! If you experience spoken communication difficulties, I highly recommend them (I'm not just plugging them because it's my friend's business, I'm plugging them because they are SO DAMN USEFUL!)
I favour typing because it gives me the opportunity to think about what I'm saying and ensure that my meaning, points, etc are accurately conveyed. It allows me more processing time than face-to-face conversations, which generally demand immediate responses, which is stressful. I often stumble over my words, especially when I'm stressed and/or tired. I long ago lost count of how many times my spoken words have got people angry, upset, etc when it really wasn't my intention and I've been grossly misunderstood because I haven't been able to articulate myself properly.
So I'd probably describe myself as mostly-speaking - I don't think that the term "speaking" is entirely applicable to me because of what I've said above. "Partially speaking" suggests that my ability to communicate through speech is lower than it is. So I'd go with "mostly speaking".
Wednesday 19 April 2017
30 Days of Autism Acceptance: Day 19
#30DaysofAutismAcceptance
Day 19:
Talk about your struggles and strengths. What things are difficult for you because you are autistic? What are the positives of being autistic? Do you have a special skill or talent?
Being autistic in a neurotypical-centric world can be challenging at times, so yes, I do have a number of difficulties, and they are often difficult because of the world in which I live. However, there are definite positives of being autistic, too.
Difficulties
The world can be too loud, too bright, too overwhelming.
I'm hypersensitive to light, which can be extremely painful. I'm not sure how much of it is because I'm autistic and how much of it is because I have Irlen Syndrome, as there's a lot of crossover, but as I'm hypersensitive in all my senses, some influence from the autism would make sense.
My olfactory (smell) hypersensitivity can trigger nausea and headaches, and there are places I have to avoid because of the smell(s), especially if there are multiple smells combined. If I go past Lush on the high street I have to take a deep breath a safe distance from it, check in which direction the wind is blowing and then just roll past as fast as I can so I can breathe again. It's really not helpful when people say "It's not that bad" and "Stop being melodramatic about it" - yes, it is "that bad" and no, I'm not being "melodramatic". The smell is unbearable to me and causes me problems; please respect that.
My hypersensitivity to touch can make clothes shopping really challenging - there are quite a few fabrics that I cannot bear the feel of on my skin and quite a few that physically hurt. I'm difficult enough to shop for because my arms and legs are so long (if I want a long-sleeved top, I'm better off going to the men's section because women's long-sleeved tops generally stop about 3 inches short of my wrists), so this just makes it even harder!
I have very sensitive hearing due to being autistic, so sounds that don't bother other people do bother me and cause physical pain - the high-pitched whine of a kitchen appliance, the buzz of a heater, the crackle when the TV scart lead is ever-so-slightly out of its optimum position, for example - to the point where if it's not dealt with it can trigger a full meltdown.
Multiple noises make it impossible for me to comprehend words, usually things being said to me - they merge together and become one big wall of incomprehensible NOISE, which hurts and is overwhelming and generally triggers meltdowns.
Meltdowns are horrible. For me, they're triggered by sensory overload (sounds, light(s), smells, etc) or stress. It's a horrible sensation, complete loss of control, can lead me to hurt myself (such as repeatedly hitting my head or some other part of me against a wall), leaves me utterly drained and exhausted and (though this is at the bottom of my list in terms of importance) isn't socially acceptable. These days they only tend to occur when I'm unable, for whatever reason, to get out of a sesnory-overload situation (multiple noises and stress are the most common triggers for me). There are usually warning signs - it doesn't just happen out of nowhere, I'll be showing signs of increasing discomfort and agitation.
The time taken to process information, questions, etc is usually a little longer than for NTs. This can then give the impression that I'm not listening (and then people get annoyed with me - don't do it, guys, just allow us a bit more time to process and we'll answer when we're ready), that I've not understood (if I haven't understood, I'll say so), that I'm being rude, that I'm being evasive, etc. This one only counts as a difficulty when people aren't willing to give me the time I need to process things (this is particularly problematic at job interviews, where pressure and stress are already high).
Stress has a tendency to cause me to stumble over my words and/or on some occasions, when I'm stressed enough, lose the ability to communicate through speech. From what I've read, this seems to be a fairly common issue for autistics.
Misunderstandings of people, both verbally and non-verbally, is really common. It's something I'll talk about in more detail at a later date. It's caused a lot of difficulties with a lot of people.
I don't like admitting it, but I am vulnerable to being used and manipulated without realising it. It's happened to me on a few occasions and it's really not acceptable. This is a common problem for autistics, and another topic I'll cover in more detail in future.
My tendency to be very rigid can cause problems - I need structure and I need to know things. Not having them can throw me so badly off-kilter that it will mess up the rest of my day and possibly cause a shutdown or meltdown because I simply can't process it. If someone suddenly changes a plan, I really struggle to process it and if something unexpected comes up, something I haven't planned for, I can't deal with it. Again, this is something I'll explore in more detail another time.
Positives
I have an excellent eye for detail that others often miss.
I'm methodical, precise and thorough, which is really useful for many different things in life.
People know that when they ask for my opinion, they're definitely getting the truth! I've got a couple of friends who like going clothes-shopping with me because I'll tell them straight up, in these words, if they look awful in something! I'm not going to try and put a positive spin on it, I'm not going to be tactful, I just tell it like it is!
With my "special interests", you can be sure I'm an expert and know lots of information and details about them!
I'm very visual, which is really useful for someone working with sign language! I've picked up the language very easily, a lot more easily than many hearing people, because I already think visually - I recall things in images rather than words. It also comes in useful when learning new routes - I often only need the directions the first couple of times, and then the next couple of times have them to hand just in case for prompts, and then after that I'm good. I remember key visual details (and I'm also fairly good at translating into my mind the maps of the route that I've drawn). Also, everything gets colour-co-ordinated!
**
I suspect there are other things as well, but that's all I can think of at this point. A lot of the difficulties can be ameliorated or even removed completely if environments are more autistic-friendly, so they're more problems with the world rather than my neurology.
As for special skills/talents, I'm pretty good with words, I sign... Probably other things, so I'll come back to this another time. I'm quite tired now.
Day 19:
Talk about your struggles and strengths. What things are difficult for you because you are autistic? What are the positives of being autistic? Do you have a special skill or talent?
Being autistic in a neurotypical-centric world can be challenging at times, so yes, I do have a number of difficulties, and they are often difficult because of the world in which I live. However, there are definite positives of being autistic, too.
Difficulties
The world can be too loud, too bright, too overwhelming.
I'm hypersensitive to light, which can be extremely painful. I'm not sure how much of it is because I'm autistic and how much of it is because I have Irlen Syndrome, as there's a lot of crossover, but as I'm hypersensitive in all my senses, some influence from the autism would make sense.
My olfactory (smell) hypersensitivity can trigger nausea and headaches, and there are places I have to avoid because of the smell(s), especially if there are multiple smells combined. If I go past Lush on the high street I have to take a deep breath a safe distance from it, check in which direction the wind is blowing and then just roll past as fast as I can so I can breathe again. It's really not helpful when people say "It's not that bad" and "Stop being melodramatic about it" - yes, it is "that bad" and no, I'm not being "melodramatic". The smell is unbearable to me and causes me problems; please respect that.
My hypersensitivity to touch can make clothes shopping really challenging - there are quite a few fabrics that I cannot bear the feel of on my skin and quite a few that physically hurt. I'm difficult enough to shop for because my arms and legs are so long (if I want a long-sleeved top, I'm better off going to the men's section because women's long-sleeved tops generally stop about 3 inches short of my wrists), so this just makes it even harder!
I have very sensitive hearing due to being autistic, so sounds that don't bother other people do bother me and cause physical pain - the high-pitched whine of a kitchen appliance, the buzz of a heater, the crackle when the TV scart lead is ever-so-slightly out of its optimum position, for example - to the point where if it's not dealt with it can trigger a full meltdown.
Multiple noises make it impossible for me to comprehend words, usually things being said to me - they merge together and become one big wall of incomprehensible NOISE, which hurts and is overwhelming and generally triggers meltdowns.
Meltdowns are horrible. For me, they're triggered by sensory overload (sounds, light(s), smells, etc) or stress. It's a horrible sensation, complete loss of control, can lead me to hurt myself (such as repeatedly hitting my head or some other part of me against a wall), leaves me utterly drained and exhausted and (though this is at the bottom of my list in terms of importance) isn't socially acceptable. These days they only tend to occur when I'm unable, for whatever reason, to get out of a sesnory-overload situation (multiple noises and stress are the most common triggers for me). There are usually warning signs - it doesn't just happen out of nowhere, I'll be showing signs of increasing discomfort and agitation.
The time taken to process information, questions, etc is usually a little longer than for NTs. This can then give the impression that I'm not listening (and then people get annoyed with me - don't do it, guys, just allow us a bit more time to process and we'll answer when we're ready), that I've not understood (if I haven't understood, I'll say so), that I'm being rude, that I'm being evasive, etc. This one only counts as a difficulty when people aren't willing to give me the time I need to process things (this is particularly problematic at job interviews, where pressure and stress are already high).
Stress has a tendency to cause me to stumble over my words and/or on some occasions, when I'm stressed enough, lose the ability to communicate through speech. From what I've read, this seems to be a fairly common issue for autistics.
Misunderstandings of people, both verbally and non-verbally, is really common. It's something I'll talk about in more detail at a later date. It's caused a lot of difficulties with a lot of people.
I don't like admitting it, but I am vulnerable to being used and manipulated without realising it. It's happened to me on a few occasions and it's really not acceptable. This is a common problem for autistics, and another topic I'll cover in more detail in future.
My tendency to be very rigid can cause problems - I need structure and I need to know things. Not having them can throw me so badly off-kilter that it will mess up the rest of my day and possibly cause a shutdown or meltdown because I simply can't process it. If someone suddenly changes a plan, I really struggle to process it and if something unexpected comes up, something I haven't planned for, I can't deal with it. Again, this is something I'll explore in more detail another time.
Positives
I have an excellent eye for detail that others often miss.
I'm methodical, precise and thorough, which is really useful for many different things in life.
People know that when they ask for my opinion, they're definitely getting the truth! I've got a couple of friends who like going clothes-shopping with me because I'll tell them straight up, in these words, if they look awful in something! I'm not going to try and put a positive spin on it, I'm not going to be tactful, I just tell it like it is!
With my "special interests", you can be sure I'm an expert and know lots of information and details about them!
I'm very visual, which is really useful for someone working with sign language! I've picked up the language very easily, a lot more easily than many hearing people, because I already think visually - I recall things in images rather than words. It also comes in useful when learning new routes - I often only need the directions the first couple of times, and then the next couple of times have them to hand just in case for prompts, and then after that I'm good. I remember key visual details (and I'm also fairly good at translating into my mind the maps of the route that I've drawn). Also, everything gets colour-co-ordinated!
**
I suspect there are other things as well, but that's all I can think of at this point. A lot of the difficulties can be ameliorated or even removed completely if environments are more autistic-friendly, so they're more problems with the world rather than my neurology.
As for special skills/talents, I'm pretty good with words, I sign... Probably other things, so I'll come back to this another time. I'm quite tired now.
Tuesday 18 April 2017
30 Days of Autism Acceptance: Day 18
#30DaysofAutismAcceptance
Day 18:
Talk about functioning labels. What is your opinion about functioning labels? Where are you on the spectrum? If you don’t like functioning labels how would you describe your functioning ability?
This is another hot, controversial and complex topic and another that I'll need to do a lot more reading about before I can explore it thoroughly and more deeply, but this article is an excellent example of why functioning labels can be problematic.
The short answer is: I don't like functioning labels because I think they're restrictive, limiting, too simplistic, too general, divisive and inaccurate.
Intellectually, I can understand why these labels exist and why some people want/favour them (it is important to note that saying I understand something and the reasons behind it is not the same as me agreeing with it). There seems to be an inherent human need to categorise and classify everything. It can help guide services, and guide people and enable them access to services that are likely to be beneficial, places they might not otherwise know about or be eligible for. Here in the UK a label of high-care needs that the Enhanced daily living rate of Personal Independence Payment gives allows a person access to additional welfare support such as Carer's Allowance and a label of severely limited mobility that gives a person the Enhanced rate of mobility under PIP grants a person access to the Motability scheme, which enables you to have a car, scooter or powerchair, and the car can be adapted to your needs. I have a car through the Motability scheme, an automatic Ford Focus with hand controls, without which I would be housebound. If I was deemed not eligible for the Enhanced mobility rate (which I found out I am - letter arrived this morning, causing much relief; this is not the place to discuss the DWP and the government's approach to disability) I would not be able to access the Motability scheme (technically, I would lose that access because I was getting Higher-rate mobility under Disability Living Allowance, PIP's predecessor and if they had decided not to award me Enhanced under PIP I would have had 3 weeks to return my car or buy it off Motability).
What I am trying to say is that these labels of "high-functioning" and "low-functioning" can direct people and give them access to appropriate services, support and so on that without the label they may not get (in theory; the reality on the ground can be very different depending on budgets, staff and so on). They can give some idea of what to expect in the future - though I will go on to say why this cannot be set in stone or even necessarily very helpful.
Musings of An Aspie, linked above, gives an excellent example. From the initial descriptions, she appears to be describing two different women. Turns out she isn't and that she's describing two different aspects of herself. And that demonstrates why functioning labels are so restrictive, overgeneralised and problematic. I'm considered "high-functioning" - I speak, I have a large vocabulary, I've lived on my own, I'm married, I've had a job, I've been to university, I drive, I don't have any care or support workers and never have, I manage my household bills etc, I manage my money, I'm very independent. In many ways I'm much more limited by my physical issues than by autism.
BUT.
When I'm very stressed, tired, overwhelmed, in too much pain, sensory-overloaded and so on, you wouldn't know any of that. Speech fails me and I'm reliant on either my communication cards or BSL. I can't process what's being said. I can't focus or concentrate on anything. I can't think. I don't respond. I clap my hands over my ears. I rock back and forth repetitively. I keen and screech. I repeateadly hit myself either with my hands or against a nearby surface (usually a wall). I react violently if touched. I can't get myself out of a difficult situation. If you only saw me in that situation, you would label me "low-functioning"; you wouldn't know about any of the things in the paragraph above.
Different situations, circumstances and environments, as well as mental states and other things going on in our lives mean that our coping abilities fluctuate, which means that our presentation and behaviour fluctuate. Functioning labels don't allow for that.
And these labels can send false messages. If someone is labelled "low-functioning" as a child, expectations of them are low and they may very well not be aided and encouraged in fulfilling their potential, may be forever put in special education with only very basic schooling, even though they may be intellectually very bright. Inability to speak often means that someone is assumed to have a severe learning disability and is thus not given the opportunity, support or encouragement to express the reality. Because not much is expected of them, not much is achieved. They are presumed incompetent, limited, a burden.
Yet if their needs are recognised and accommodated, and the support made available, there's a huge difference. Again I direct you to Amy Sequenzia, who has cerebral palsy alongside being a nonspeaking autistic, and thus was considered "low-functioning" and was not expected to do or achieve anything in life. Instead, with her needs accommodated and understood, she has become a very vocal voice for autistics online, as she communicates through typing. Or Carly Fleischmann, who doesn't have CP but otherwise is similar to Amy, and again being introduced to typing has completely changed her world and prospects, earning a degree amongst other things, which her parents were told would be impossible. Both these amazing women were considered "low-functioning" until given access to alternative means of communication and their needs accommodated.
If someone is labelled "high-functioning", their needs can be trivialised, minimalised and they are expected to be much more neurotypical. Their needs are dismissed, because they are expected to manage perfectly well. Expectations are different from those with the "low-functioning" label, but no less unfair - they are expected to be social, to be "normal", to pass as NT, to cope, to not require accommodations (and when asked for, get rejected). When things like meltdowns occur they can be made to feel guilty and ashamed about it because they're "not like low-functioning autistics and they should know better". Because I can speak I am expected to always, in every situation, be able to speak and communicate through speech. I am also expected to respond as quickly as an NT, even though I require a little more time to process things before responding (problematic in job interviews). Because I went to mainstream school and had no accommodations (because I wasn't diagnosed) I am expected to always be able to manage just as well as an NT person in a social situation. Because I'm considered "high-functioning", when I have a meltdown people are shocked and horrified, and when it happened when I was a child it was considered bad behaviour and made my parents look bad (well, my mum - my dad was always doing his own thing). When there's a situation in which an NT person would cope, I would be expected to cope just as well as them.
That's one way they can be divisive. Another way, as we've seen with comments from Temple Grandin amongst others, is a way of separating us out in order to decide (arbitrarily) which autistics "deserve" to exist (the eugenicist approach) - ie. those who can "contribute", who aren't "burdens", etc. And it pits us against each other, when we should be doing the opposite - coming together, demonstrating the broadness of the spectrum and the diversity of our experiences, because there's still such a narrow understanding in the general population of what autism is and isn't.
So that's the basics on why I strongly dislike functioning labels. I don't use them if I can possibly help it.
My formal diagnosis is Asperger's, because I was assessed in 2011-12 and diagnosed in 2012, before it was absorbed into the umbrella "autism spectrum condition/disorder". As for my "functioning ability", I hope I've at least covered the basics and fundamentals above, though in future I may well go into more detail.
At some point in the future there will be a much more in-depth post about this subject - it's a complex, controversial one and I want to do it justice - but like a lot of the topics in 30DaysofAutismAwareness, to an extent this post is an introduction to the topic.
Day 18:
Talk about functioning labels. What is your opinion about functioning labels? Where are you on the spectrum? If you don’t like functioning labels how would you describe your functioning ability?
This is another hot, controversial and complex topic and another that I'll need to do a lot more reading about before I can explore it thoroughly and more deeply, but this article is an excellent example of why functioning labels can be problematic.
The short answer is: I don't like functioning labels because I think they're restrictive, limiting, too simplistic, too general, divisive and inaccurate.
Intellectually, I can understand why these labels exist and why some people want/favour them (it is important to note that saying I understand something and the reasons behind it is not the same as me agreeing with it). There seems to be an inherent human need to categorise and classify everything. It can help guide services, and guide people and enable them access to services that are likely to be beneficial, places they might not otherwise know about or be eligible for. Here in the UK a label of high-care needs that the Enhanced daily living rate of Personal Independence Payment gives allows a person access to additional welfare support such as Carer's Allowance and a label of severely limited mobility that gives a person the Enhanced rate of mobility under PIP grants a person access to the Motability scheme, which enables you to have a car, scooter or powerchair, and the car can be adapted to your needs. I have a car through the Motability scheme, an automatic Ford Focus with hand controls, without which I would be housebound. If I was deemed not eligible for the Enhanced mobility rate (which I found out I am - letter arrived this morning, causing much relief; this is not the place to discuss the DWP and the government's approach to disability) I would not be able to access the Motability scheme (technically, I would lose that access because I was getting Higher-rate mobility under Disability Living Allowance, PIP's predecessor and if they had decided not to award me Enhanced under PIP I would have had 3 weeks to return my car or buy it off Motability).
What I am trying to say is that these labels of "high-functioning" and "low-functioning" can direct people and give them access to appropriate services, support and so on that without the label they may not get (in theory; the reality on the ground can be very different depending on budgets, staff and so on). They can give some idea of what to expect in the future - though I will go on to say why this cannot be set in stone or even necessarily very helpful.
Musings of An Aspie, linked above, gives an excellent example. From the initial descriptions, she appears to be describing two different women. Turns out she isn't and that she's describing two different aspects of herself. And that demonstrates why functioning labels are so restrictive, overgeneralised and problematic. I'm considered "high-functioning" - I speak, I have a large vocabulary, I've lived on my own, I'm married, I've had a job, I've been to university, I drive, I don't have any care or support workers and never have, I manage my household bills etc, I manage my money, I'm very independent. In many ways I'm much more limited by my physical issues than by autism.
BUT.
When I'm very stressed, tired, overwhelmed, in too much pain, sensory-overloaded and so on, you wouldn't know any of that. Speech fails me and I'm reliant on either my communication cards or BSL. I can't process what's being said. I can't focus or concentrate on anything. I can't think. I don't respond. I clap my hands over my ears. I rock back and forth repetitively. I keen and screech. I repeateadly hit myself either with my hands or against a nearby surface (usually a wall). I react violently if touched. I can't get myself out of a difficult situation. If you only saw me in that situation, you would label me "low-functioning"; you wouldn't know about any of the things in the paragraph above.
Different situations, circumstances and environments, as well as mental states and other things going on in our lives mean that our coping abilities fluctuate, which means that our presentation and behaviour fluctuate. Functioning labels don't allow for that.
And these labels can send false messages. If someone is labelled "low-functioning" as a child, expectations of them are low and they may very well not be aided and encouraged in fulfilling their potential, may be forever put in special education with only very basic schooling, even though they may be intellectually very bright. Inability to speak often means that someone is assumed to have a severe learning disability and is thus not given the opportunity, support or encouragement to express the reality. Because not much is expected of them, not much is achieved. They are presumed incompetent, limited, a burden.
Yet if their needs are recognised and accommodated, and the support made available, there's a huge difference. Again I direct you to Amy Sequenzia, who has cerebral palsy alongside being a nonspeaking autistic, and thus was considered "low-functioning" and was not expected to do or achieve anything in life. Instead, with her needs accommodated and understood, she has become a very vocal voice for autistics online, as she communicates through typing. Or Carly Fleischmann, who doesn't have CP but otherwise is similar to Amy, and again being introduced to typing has completely changed her world and prospects, earning a degree amongst other things, which her parents were told would be impossible. Both these amazing women were considered "low-functioning" until given access to alternative means of communication and their needs accommodated.
If someone is labelled "high-functioning", their needs can be trivialised, minimalised and they are expected to be much more neurotypical. Their needs are dismissed, because they are expected to manage perfectly well. Expectations are different from those with the "low-functioning" label, but no less unfair - they are expected to be social, to be "normal", to pass as NT, to cope, to not require accommodations (and when asked for, get rejected). When things like meltdowns occur they can be made to feel guilty and ashamed about it because they're "not like low-functioning autistics and they should know better". Because I can speak I am expected to always, in every situation, be able to speak and communicate through speech. I am also expected to respond as quickly as an NT, even though I require a little more time to process things before responding (problematic in job interviews). Because I went to mainstream school and had no accommodations (because I wasn't diagnosed) I am expected to always be able to manage just as well as an NT person in a social situation. Because I'm considered "high-functioning", when I have a meltdown people are shocked and horrified, and when it happened when I was a child it was considered bad behaviour and made my parents look bad (well, my mum - my dad was always doing his own thing). When there's a situation in which an NT person would cope, I would be expected to cope just as well as them.
That's one way they can be divisive. Another way, as we've seen with comments from Temple Grandin amongst others, is a way of separating us out in order to decide (arbitrarily) which autistics "deserve" to exist (the eugenicist approach) - ie. those who can "contribute", who aren't "burdens", etc. And it pits us against each other, when we should be doing the opposite - coming together, demonstrating the broadness of the spectrum and the diversity of our experiences, because there's still such a narrow understanding in the general population of what autism is and isn't.
So that's the basics on why I strongly dislike functioning labels. I don't use them if I can possibly help it.
My formal diagnosis is Asperger's, because I was assessed in 2011-12 and diagnosed in 2012, before it was absorbed into the umbrella "autism spectrum condition/disorder". As for my "functioning ability", I hope I've at least covered the basics and fundamentals above, though in future I may well go into more detail.
At some point in the future there will be a much more in-depth post about this subject - it's a complex, controversial one and I want to do it justice - but like a lot of the topics in 30DaysofAutismAwareness, to an extent this post is an introduction to the topic.
Monday 17 April 2017
30 Days of Autism Acceptance: Day 17
#30DaysofAutismAcceptance
Day 17:
Talk about empathy. Many people think autistics do not have empathy. What’s your experience with empathy? Are you hyper empathic or not empathic at all?
I'll be honest, I've not really thought about empathy - there have been so many things to think and read about, and the subject of empathy hasn't really come under my radar, so I'm not sure if there's much I can say at this point.
That said, people who claim that autistics don't have empathy, as a blanket statement, don't really know what they're talking about. I know I have empathy and I know plenty of other autistics who do. Some don't, but then some NTs don't have empathy. We don't always show it in the same way as NTs, but we can have it, same as NTs.
I wouldn't say I fall into either camp of hyper-empathetic or not-empathetic.
This one I really don't know, so I'm going to come back to it at a later date.
Day 17:
Talk about empathy. Many people think autistics do not have empathy. What’s your experience with empathy? Are you hyper empathic or not empathic at all?
I'll be honest, I've not really thought about empathy - there have been so many things to think and read about, and the subject of empathy hasn't really come under my radar, so I'm not sure if there's much I can say at this point.
That said, people who claim that autistics don't have empathy, as a blanket statement, don't really know what they're talking about. I know I have empathy and I know plenty of other autistics who do. Some don't, but then some NTs don't have empathy. We don't always show it in the same way as NTs, but we can have it, same as NTs.
I wouldn't say I fall into either camp of hyper-empathetic or not-empathetic.
This one I really don't know, so I'm going to come back to it at a later date.
Sunday 16 April 2017
Autism Acceptance Day: Interview with Katherine Lawrence- Autism Acceptan...
Two posts in one day!
Last month I came across a lady called Paula who's heavily involved in Autism Acceptance Day/Months. She's doing a series of interviews with autistics throughout April and I volunteered to participate, so here's my interview!
Autism Acceptance Day: Interview with Katherine Lawrence- Autism Acceptan...: This interview is with Katherine Lawrence. Katherine is 32, and blogs at Autistic on Wheels. Katherine has an Asperger’s diagnosis ...
Last month I came across a lady called Paula who's heavily involved in Autism Acceptance Day/Months. She's doing a series of interviews with autistics throughout April and I volunteered to participate, so here's my interview!
Autism Acceptance Day: Interview with Katherine Lawrence- Autism Acceptan...: This interview is with Katherine Lawrence. Katherine is 32, and blogs at Autistic on Wheels. Katherine has an Asperger’s diagnosis ...
30 Days of Autism Acceptance: Day 16
#30DaysofAutismAcceptance
Day 16:
Talk about treatment. Have you been through any therapies? What ones did you like? Which ones didn’t you like? Do you think autistic people need therapy for their autism?
This is going to be shorter than a number of the other posts, not least because the only therapy I've been through for anything even vaguely connected to autism is some counselling when I was 17 (had some physio for the fibro and ME but this isn't about that). Teenage years are incredibly difficult when you're an undiagnosed autistic - I'm not speaking from just my perspective but also from the many articles, posts and comments I've seen online. I was going through a really rough patch and school sent me to counselling. It didn't really do any good, partly because the dynamic wasn't right (you need to connect and click with the counsellor in some way, I think, in order for it to be successful), I couldn't really talk about things and the approach wasn't autistic-friendly - I didn't know at the time that I was autistic, nobody realised and I don't know if there were different approaches for NTs and autistics at the time (there doesn't seem to be much about it now so it's unlikely back in 2001/2002, and although some people have started exploring it recently, I don't think they had 15 years ago).
As for therapy for autism, this is something I don't know much at all about as I've not had a chance to read much on the subject yet, although I'd like to look into it further so I can discuss it at a later date. What I have read about is the really horrible stuff - ABA (Applied Behaviour Analysis), chelation, MMS (Magical Mineral Solution) and other abusive "treatments" that tend to be favoured by the antivaxxers and similar groups.
ABA is pretty much universally hated by autistics. Amy Sequenzia has written fairly extensively on it, as have a number of other autistics, and they describe it as torturous, abusive and ableist because it is designed to force the autistic to comply with whatever is demanded of them and to force them to act neurotypical, because the aim is to make the person neurotypical (which isn't possible; the closest we'd ever get to that is presenting as NT - neurologically we're still autistic, but we've had our true selves suppressed). From what I've read, it can be quite hard to separate out true ABA from other therapies, especially in the US because of medical insurance issues - some policies only cover certain therapies, so there are many other therapies that aren't actually ABA but are titled as such in order to get the insurance company to pay for it.
Chelation is designed to remove "heavy metals" and "toxins" from the body. It's quite commonly used among the alternative-medicine circles but there is no scientific evidence that suggests it actually works.
MMS is basically a bleach product that is believed by its supporters to remove "parasites" and other such things from the body that they claim cause autism. It's complete and utter rubbish. The "parasites" that are expelled from the body are actually pieces of the person's intestines. These "treatments" are poisonous, harmful, dangerous and will cause permanent damage; the process is excruciating for the person and it is NOT ACCEPTABLE. These "treatments" are pushed by quacks, charlatans and snake-oil salesmen. It's abusive, it's torture, there is no scientific evidence whatsoever supporting it and IT DOES NOT CURE AUTISM.
If any of my readers have come across any "treatments", "therapies" and "cures", I'd be interested to know about them, as I'd like to be more informed and be able to look into them further so I can discuss them and educate people about them.
Day 16:
Talk about treatment. Have you been through any therapies? What ones did you like? Which ones didn’t you like? Do you think autistic people need therapy for their autism?
This is going to be shorter than a number of the other posts, not least because the only therapy I've been through for anything even vaguely connected to autism is some counselling when I was 17 (had some physio for the fibro and ME but this isn't about that). Teenage years are incredibly difficult when you're an undiagnosed autistic - I'm not speaking from just my perspective but also from the many articles, posts and comments I've seen online. I was going through a really rough patch and school sent me to counselling. It didn't really do any good, partly because the dynamic wasn't right (you need to connect and click with the counsellor in some way, I think, in order for it to be successful), I couldn't really talk about things and the approach wasn't autistic-friendly - I didn't know at the time that I was autistic, nobody realised and I don't know if there were different approaches for NTs and autistics at the time (there doesn't seem to be much about it now so it's unlikely back in 2001/2002, and although some people have started exploring it recently, I don't think they had 15 years ago).
As for therapy for autism, this is something I don't know much at all about as I've not had a chance to read much on the subject yet, although I'd like to look into it further so I can discuss it at a later date. What I have read about is the really horrible stuff - ABA (Applied Behaviour Analysis), chelation, MMS (Magical Mineral Solution) and other abusive "treatments" that tend to be favoured by the antivaxxers and similar groups.
ABA is pretty much universally hated by autistics. Amy Sequenzia has written fairly extensively on it, as have a number of other autistics, and they describe it as torturous, abusive and ableist because it is designed to force the autistic to comply with whatever is demanded of them and to force them to act neurotypical, because the aim is to make the person neurotypical (which isn't possible; the closest we'd ever get to that is presenting as NT - neurologically we're still autistic, but we've had our true selves suppressed). From what I've read, it can be quite hard to separate out true ABA from other therapies, especially in the US because of medical insurance issues - some policies only cover certain therapies, so there are many other therapies that aren't actually ABA but are titled as such in order to get the insurance company to pay for it.
Chelation is designed to remove "heavy metals" and "toxins" from the body. It's quite commonly used among the alternative-medicine circles but there is no scientific evidence that suggests it actually works.
MMS is basically a bleach product that is believed by its supporters to remove "parasites" and other such things from the body that they claim cause autism. It's complete and utter rubbish. The "parasites" that are expelled from the body are actually pieces of the person's intestines. These "treatments" are poisonous, harmful, dangerous and will cause permanent damage; the process is excruciating for the person and it is NOT ACCEPTABLE. These "treatments" are pushed by quacks, charlatans and snake-oil salesmen. It's abusive, it's torture, there is no scientific evidence whatsoever supporting it and IT DOES NOT CURE AUTISM.
If any of my readers have come across any "treatments", "therapies" and "cures", I'd be interested to know about them, as I'd like to be more informed and be able to look into them further so I can discuss them and educate people about them.
Saturday 15 April 2017
30 Days of Autism Acceptance: Day 15
#30DaysofAutismAcceptance
Day 15:
Talk about identity. How do you identify? Autistic? Asperger’s? Person with Autism? What’s your take on person/identity first language?
I'm going to do a more in-depth post on this in future, because I would like to do one that's thoroughly researched, includes references to various articles on the matter and is more comprehensive, with detailed explanations; this post is more a summary, hence the bullet points.
I identify as autistic and as an Aspie* (if people don't know what "Aspie" means, I explain that it's someone who has a diagnosis of Asperger's Syndrome, which is part of the autistic spectrum - I was diagnosed in 2012, before Asperger's was removed as a separate diagnosis and absorbed into the umbrella term of "autistic spectrum condition"). Like the vast majority of my autistic brethren, I reject person-first language ("has autism"/"person with autism") and use identity-first language, aka IFL ("is autistic"). If an individual wants to use person-first language (PFL) to describe themselves then I respect that and will use PFL when referring to them, but as you may have noticed on this blog, IFL is the default. I did a lot of reading on the subject before reaching my conclusions, I've read the arguments on both sides, and that is why I am firmly in the IFL camp, rejecting PFL.
*Edit June 2018: I don't use "Aspie" any more, just "autistic". There will be a future post on this.
So why choose IFL and reject PFL?
When I write the comprehensive post on language use, there may be other reasons that I come across,but I think this is enough for now.
I am Autistic.
Day 15:
Talk about identity. How do you identify? Autistic? Asperger’s? Person with Autism? What’s your take on person/identity first language?
I'm going to do a more in-depth post on this in future, because I would like to do one that's thoroughly researched, includes references to various articles on the matter and is more comprehensive, with detailed explanations; this post is more a summary, hence the bullet points.
I identify as autistic and as an Aspie* (if people don't know what "Aspie" means, I explain that it's someone who has a diagnosis of Asperger's Syndrome, which is part of the autistic spectrum - I was diagnosed in 2012, before Asperger's was removed as a separate diagnosis and absorbed into the umbrella term of "autistic spectrum condition"). Like the vast majority of my autistic brethren, I reject person-first language ("has autism"/"person with autism") and use identity-first language, aka IFL ("is autistic"). If an individual wants to use person-first language (PFL) to describe themselves then I respect that and will use PFL when referring to them, but as you may have noticed on this blog, IFL is the default. I did a lot of reading on the subject before reaching my conclusions, I've read the arguments on both sides, and that is why I am firmly in the IFL camp, rejecting PFL.
*Edit June 2018: I don't use "Aspie" any more, just "autistic". There will be a future post on this.
So why choose IFL and reject PFL?
- Autism affects every aspect of my being, everything about how I experience the world; autism is intrinsic to who I am, how I think; YOU CANNOT SEPARATE ME AND AUTISM and PFL seeks to do precisely that. I don't say I am a "person with femaleness" or a "person with whiteness", like it's an optional add-on.
- If I was not autistic, I would be a completely different person. I'd probably retain a degree of bluntness because I'm Northern (here in the UK, Northerners tend to be much more blunt and direct than Southerners, I might enjoy some of the things I do, but possibly not to the degree I do or with the intensity that I do. People talk about autistic "obsessions" and "special interests"; if it was a neurotypical person they'd simply be referred to as an "expert", so why can't we be referred to that way with regards to our "obsessions"/"special interests"? And for some autistics, that autistic desire to know ABSOLUTELY EVERYTHING about something really does lead us to become top experts in our area of interest. My knowledge of autism has led me to come up with a number of ideas for books that I'm working on (fiction and non-fiction), and without that autistic desire to know absolutely everything I might not have those ideas and wouldn't be going in the direction I am.
- I shouldn't have to remind people that I'm a person; that should be obvious. PFL feels patronising to me because it comes across as "Now don't forget, this is a human being just like me, you must remember that they are human, in case you'd forgotten". By using PFL it comes across as dehumanising, which is perpetuated by old ideas that we're monsters, not fully human, broken, defective; by using IFL, it's much more affirming, a much more positive, intrinsic aspect of ourselves.
- I am aware that "autistic" has in the past been used as a derogatory slur, and that seems to be making a comeback at the moment, which makes me so angry; we are claiming it for ourselves and speaking out to show that we are not monsters, we are equal members of society, and we won't let those people win,
- PFL makes autism sound like a disease (for example, I have fibromyalgia, I have friends with MS), which it isn't - it's a different neurology.
- Exclusive use of PFL is almost inescapable in the "cure autism" world, partly because of the mentality of autism being a disease (which is separate from the body and is an invader, an attacker, a destroyer) and partly because of their desire to separate (and ultimately remove) autism from the person. Even though you can't.
- PFL and the curebies (people who want to cure autism) will forever be associated, due to history, with the antivax attitudes and agenda, because it ties in with the autism-as-disease ideas.
- Continuing on from the above, because we tend to use PFL when talking about disease, we have been conditioned to see the use of PFL as inherently negative because the thing the person "has" or is "with" is generally a disease and thus out to cause harm to the person, so when using it regarding autism, it sends powerful signals that autism is Purely A Bad Thing.
- A lot of autism organisations that speak about us without us use exclusively PFL; by using IFL we are distancing ourselves from those organisations and positioning ourselves with organisations that are autistic-led, that include autistics, that have our best interests at heart, that target acceptance.
- For me, using IFL asserts myself and my actually-autistic voice, separating me from Autism Parents/Autism Warrior Parents and other ableist and/or curebie "allies", because they pretty much exclusively use PFL. They also force it on us, act as though they know best, don't listen to our voices when we disagree with them and explain why we disagree, shut us down, silence us, scream at us that we don't know what we're talking about and that we don't understand (I've often seen them add that this is because our brains are broken, defective, etc), they kick us off pages for daring to question how they present autism and using IFL (I have actually been kicked off an Autism $peaks page primarily for use of IFL - they told me what I "should" be using and when I informed them that the vast majority of us favour IFL, I first got screamed at and then got kicked off). By using IFL, I am positioning and connecting myself with my fellow autistics, asserting my Autistic identity and being part of the world that accepts autism and neurodiversity, and seeks to accommodate and include us rather than hate us and desire our eradication.
- And finally, if those reasons weren't enough, PFL is just so clunky! It's a real mouthful, compared to IFL!
When I write the comprehensive post on language use, there may be other reasons that I come across,but I think this is enough for now.
I am Autistic.
Friday 14 April 2017
30 Days of Autism Acceptance: Day 14
#30DaysofAutismAcceptance
Day 14:
Talk about role models. Who are your role models? How have they influenced you?
I've got a number of role models, both autistic and non-autistic. There are more but these are the ones that spring to mind initially. I'm summarising partly because I'm still using April as an introductory period for all sorts of topics, guided by the daily prompts, and partly because I've got to leave for church in just under an hour and then have something on this evening.
So, my role models:
They have influenced me to accept my Autistic identity, to promote acceptance of neurodiversity.
They have influenced me to do my best and to never give up, however hopeless a situation may be, that even one voice can make a difference, can help bring about change.
Day 14:
Talk about role models. Who are your role models? How have they influenced you?
I've got a number of role models, both autistic and non-autistic. There are more but these are the ones that spring to mind initially. I'm summarising partly because I'm still using April as an introductory period for all sorts of topics, guided by the daily prompts, and partly because I've got to leave for church in just under an hour and then have something on this evening.
So, my role models:
- Amy Sequenzia - a nonspeaking autistic American lady who has written so many important articles about autism, autism acceptance, language use, nothing about us without us, Autism $peaks, cures and disability generally. She's also very vocal about injustice generally.
- Carly Fleischmann - another nonspeaking autistic lady who's gaining quite a following and has done a number of celebrity interviews. She clearly loves life and has, like Amy Sequenzia, achieved a lot, despite the challenges and prejudices of the world.
- Stella Young - a now-deceased Australian lady who was very vocal about disability rights and access, who repeatedly spoke out against the way disabled people are objectified and used for inspiration porn. She did an absolutely fantastic TED talk on the subject, which you can watch here and/or read the transcript here.
- Jeremy Corbyn - current leader of the UK Labour party. He's constantly maligned and attacked, ruthlessly, in the UK media, made out to be a crackpot, described as Hard Left by his detractors and enemies (even though he isn't as far-left as he's made out to be, and is far more true to the party's stances, origins and platforms than recent leaders) - a recent academic study found that only 11% of media articles and reports about him were accurate - and yet he keeps going. I don't agree with absolutely everything he believes in (anyone would be hard-pressed to find a politician who believes in 100% of the same things as them) but I agree with the vast majority of things. He speaks up for the voiceless, the discriminated against, the oppressed, the vulnerable; he fights injustice and inequality and for a better, caring society; he's principled and sticks to his principles; he can't be bought; he's a rare breed of politician.
- Jesus - I'm Catholic, Jesus was bound to come up eventually! ;-) He spoke out against injustice, inequality, greed, selfishness, exclusion and cruelty; he spoke for caring for everyone, for the the world, inclusion, selflessness.
- Pop Francis - for many of the same reasons as Corbyn and, obviously, Jesus; he's not afraid to speak out, to be controversial, to challenge the Church hierarchy; his teachings are MUCH closer to Christ's than some previous Popes. This is a man who knows what he's talking about, who has an excellent understanding of the world, who's not afraid to "get his hands dirty", as it were, who walks the walk instead of just talking the talk (he used to sneak out of the Vatican at night and work at a homeless shelter) and who is perfectly comfortable challenging those who bring the Church and humanity generally into disrepute.
They have influenced me to accept my Autistic identity, to promote acceptance of neurodiversity.
They have influenced me to do my best and to never give up, however hopeless a situation may be, that even one voice can make a difference, can help bring about change.
Thursday 13 April 2017
30 Days of Autism Acceptance: Day 13
#30DaysofAutismAcceptance
Day 13:
Talk about something funny. Has anything humorous or ironic ever happened to you because you were autistic?
I've had a few incidents that spring to mind! They generally stem from misunderstandings of language due to the literal mindset of us autistics. I think my favourite was the phrase "pull up your socks". When I was a young child I didn't have a clue what it meant so my mum had to explain it to me. After that whenever anyone said it I took great delight in dramatically pulling up my socks!
On one occasion I was going down the street with Gideon and a couple of his friends and one of them said something about someone "talking through their hat"; I'd never come across that phrase and was so completely baffled by it!
There are probably a few other things, but I'll have to think about them and maybe edit this post in the future, or do another.
Sorry this is short but I've had a really hectic day - out all day in Brixham (it's near Torquay), then barely had a chance to eat dinner before I had to leave again for Mass of the Lord's Supper at church. I've not been back that long. In addition to that, my granny died last night. (I'm OK; she'd been very frail and almost constantly sleeping for some time now, and went into a care home last May, and she was 95 so it was something we'd been waiting for for a while.)
Day 13:
Talk about something funny. Has anything humorous or ironic ever happened to you because you were autistic?
I've had a few incidents that spring to mind! They generally stem from misunderstandings of language due to the literal mindset of us autistics. I think my favourite was the phrase "pull up your socks". When I was a young child I didn't have a clue what it meant so my mum had to explain it to me. After that whenever anyone said it I took great delight in dramatically pulling up my socks!
On one occasion I was going down the street with Gideon and a couple of his friends and one of them said something about someone "talking through their hat"; I'd never come across that phrase and was so completely baffled by it!
There are probably a few other things, but I'll have to think about them and maybe edit this post in the future, or do another.
Sorry this is short but I've had a really hectic day - out all day in Brixham (it's near Torquay), then barely had a chance to eat dinner before I had to leave again for Mass of the Lord's Supper at church. I've not been back that long. In addition to that, my granny died last night. (I'm OK; she'd been very frail and almost constantly sleeping for some time now, and went into a care home last May, and she was 95 so it was something we'd been waiting for for a while.)
Wednesday 12 April 2017
30 Days of Autism Acceptance: Day 12
Day 12:
Talk about ableism. Have you experienced discrimination? Have you been the target of hate speech or slurs? Have you been a victim of abuse or violence? What’s the rudest thing someone has said to you about autism or you being autistic?
I'm thankful that I've not encountered anywhere near as much ableism or discrimination as some of my fellow autistics have, although I've been on the receiving end on two fronts: autistic and wheelchair user. Both make it harder to find a job, and 2 1/2 years after completing my MA I'm still unemployed (I've been deemed unfit for work by the DWP but I'm still looking, in case something that I can actually do comes up). A lot of the time people don't bother notifying you if you haven't got the job, which is ridiculous in this day and age - it really doesn't require much effort or cost to send out a standardised email to inform someone of their unsuccessful application! I've been told time and again that "there was someone else with more experience", which could be the case but after hearing it so often it does make you start wondering if they simply don't want to employ a wheelchair user or an autistic. At some point I'll do a post specifically about diagnosis disclosure when applying for jobs. I think at least some of the time it's not even conscious discrimination - people can see the word "autistic" and then subconsciously it puts them off because of expectations and prejudices.
On a few occasions I've been told I shouldn't have children, either because I'm in a wheelchair or because I'm autistic; I think the because-I'm-autistic one has come up more frequently. The reasons I've been given for the latter have generally been "But how will you bond with the baby?" "But how will you understand what the baby/child wants?" "How can you connect with them?" "How would you possibly empathise with them?" And so on. Plenty of autistics before more me have had children and done an excellent job! In some ways being autistic could be beneficial - I've seen so many parents give in after their child has pleaded, wheedled and thrown tantrums to get what they want, but because I'm so stubborn that unless I'm given a very good reason for changing my mind, I simply won't! And I won't care if they have a tantrum in public, either - that's not going to sway me!
There have been a few occasions when I've been talked down to and been assumed incompetent. People do sometimes change their attitudes and behaviour towards you when they find out you're autistic and it tends to be more patronising and condescending. It really irritates me that people do that - you were talking to me perfectly normally ten seconds ago! Some of the worst presumed incompetence has been from Autism Parents - I apparently can't possibly understand or know what I'm talking about because of my autism... AWPs are constantly silencing and shutting down autistics and it's not acceptable. They act as though they're superior because they're not retarded (I once got told that my autism meant I was retarded and thus couldn't possibly understand what I was saying).
I've never been the victim of violence but looking back I think I was abused by an ex-housemate who took advantage of me. The government was just changing the rules about housing benefit (it used to be that people under the age of 25 were only entitled to the shared-house rate, whereas 25 and over were assessed for a 1-bedroom place; in 2011 it was changed so that under-35s were only entitled to the shared-house rate) so I couldn't really afford to stay in my 1-bedroom place, and she was getting divorced. She's not allowed to drive for medical reasons and I have a Motability car and a disabled parking badge. I very much feel that I was used for my car and blue badge. If I wasn't able to take her somewhere when she demanded it (the rule was that she asked the night before at the very latest) she'd throw a strop like a toddler even though she knew the rule.
As for the rudest thing that's been said about autism/me being autistic? It's hard to tell. There's the comments about lack of intelligence, the stereotyping, the "but you don't look autistic", "but you can't be autistic because...", linking autism to school shootings in the US and the antivax brigade. If I think of anything else I'll edit this post to add it.
Talk about ableism. Have you experienced discrimination? Have you been the target of hate speech or slurs? Have you been a victim of abuse or violence? What’s the rudest thing someone has said to you about autism or you being autistic?
I'm thankful that I've not encountered anywhere near as much ableism or discrimination as some of my fellow autistics have, although I've been on the receiving end on two fronts: autistic and wheelchair user. Both make it harder to find a job, and 2 1/2 years after completing my MA I'm still unemployed (I've been deemed unfit for work by the DWP but I'm still looking, in case something that I can actually do comes up). A lot of the time people don't bother notifying you if you haven't got the job, which is ridiculous in this day and age - it really doesn't require much effort or cost to send out a standardised email to inform someone of their unsuccessful application! I've been told time and again that "there was someone else with more experience", which could be the case but after hearing it so often it does make you start wondering if they simply don't want to employ a wheelchair user or an autistic. At some point I'll do a post specifically about diagnosis disclosure when applying for jobs. I think at least some of the time it's not even conscious discrimination - people can see the word "autistic" and then subconsciously it puts them off because of expectations and prejudices.
On a few occasions I've been told I shouldn't have children, either because I'm in a wheelchair or because I'm autistic; I think the because-I'm-autistic one has come up more frequently. The reasons I've been given for the latter have generally been "But how will you bond with the baby?" "But how will you understand what the baby/child wants?" "How can you connect with them?" "How would you possibly empathise with them?" And so on. Plenty of autistics before more me have had children and done an excellent job! In some ways being autistic could be beneficial - I've seen so many parents give in after their child has pleaded, wheedled and thrown tantrums to get what they want, but because I'm so stubborn that unless I'm given a very good reason for changing my mind, I simply won't! And I won't care if they have a tantrum in public, either - that's not going to sway me!
There have been a few occasions when I've been talked down to and been assumed incompetent. People do sometimes change their attitudes and behaviour towards you when they find out you're autistic and it tends to be more patronising and condescending. It really irritates me that people do that - you were talking to me perfectly normally ten seconds ago! Some of the worst presumed incompetence has been from Autism Parents - I apparently can't possibly understand or know what I'm talking about because of my autism... AWPs are constantly silencing and shutting down autistics and it's not acceptable. They act as though they're superior because they're not retarded (I once got told that my autism meant I was retarded and thus couldn't possibly understand what I was saying).
I've never been the victim of violence but looking back I think I was abused by an ex-housemate who took advantage of me. The government was just changing the rules about housing benefit (it used to be that people under the age of 25 were only entitled to the shared-house rate, whereas 25 and over were assessed for a 1-bedroom place; in 2011 it was changed so that under-35s were only entitled to the shared-house rate) so I couldn't really afford to stay in my 1-bedroom place, and she was getting divorced. She's not allowed to drive for medical reasons and I have a Motability car and a disabled parking badge. I very much feel that I was used for my car and blue badge. If I wasn't able to take her somewhere when she demanded it (the rule was that she asked the night before at the very latest) she'd throw a strop like a toddler even though she knew the rule.
As for the rudest thing that's been said about autism/me being autistic? It's hard to tell. There's the comments about lack of intelligence, the stereotyping, the "but you don't look autistic", "but you can't be autistic because...", linking autism to school shootings in the US and the antivax brigade. If I think of anything else I'll edit this post to add it.
Tuesday 11 April 2017
30 Days of Autism Acceptance: Day 11
#30DaysofAutismAcceptance
Day 11:
Talk about sensory issues. Do you also have sensory processing disorder? What kind of clothes do you wear? What foods do you eat? Are you sensitive to light or sounds? How do you deal with overstimulation?
I'd need to check my full diagnostic report for whether I have a formal diagnosis of SPD (sensory processing disorder) but I definitely have issues with sensory processing. A lot of autistics are either hyper- or hypo-sensitive in various senses; I have hypersensitivity in all my sense (because why be middle-of-the-road when you can go all out and be extreme?!)
Hearing
My ears are really sensitive; I often hear sounds that most other people don't and can pick up on subtle differences and discordances that miss NTs (and older people). It's quite handy for musical things because I can easily tell if something's slightly out of tune, and I can hear that approaching emergency vehicle before other people so I've got more time to prepare to pull the car over to one side so it can pass. And as I want to go into sign language interpreting, good hearing is pretty important!
However, a lot of sounds that don't bother other people, or cause only the mildest irritation to them, can be incredibly painful to me. I often find myself covering my ears to block out/reduce the sounds when it's not an issue for anyone else; occasionally in the past it would make me horribly self-conscious but, as is frequently the case for me, caring about what other people think is secondary to being comfortable and able to cope. And multiple sounds will blur together and form one big wall of unintelligible noise that can trigger a meltdown; if there are several different sounds around me, I can't tune out some and focus on the one I'm actually listening to, so I don't like being in those environments. My coping threshold varies - if I'm with friends and comfortable and so on, I can cope better than if I'm not doing so well mentally, I'm tired or other such things.
Sight
It's pretty difficult to extricate autistic hypersensitivity from the Irlen Syndrome; a lot of autistics have Irlen as well. My tinted glasses really help, as they filter out the wavelengths of light that my brain doesn't like (Irlen is a brain condition, not an eye one) - I have claret, yellow and two kinds of blue in my lenses, as well as distance lenses (I'm also short-sighted). But flashing lights are unbearable and can trigger meltdowns. I don't have super-vision or anything like that, thanks to my genetics (my mother is also short-sighted; as my husband also is, I suspect that any children we have in the future are extremely likely to be short-sighted as well!) However, I can pick up on details that other people miss.
Smell
Hypersensitive! I often pick up on smells that others don't, and smells that are pleasant for them can be unbearable and overwhelming to me. My father (undiagnosed but at least as Aspie as me!) used to get Indian takeaway every Saturday night (he's currently on Japanese every Saturday) and on Sundays he'd reheat the leftovers and have them for lunch; the smell was horrific, so strong that it made me feel ill. I'd complain to Mum about it and pre-diagnosis she'd always be a bit scathing, telling me not to be so melodramatic and that it's not that bad/as bad as I was making out. Now I have an official diagnosis and she's accepted it, she's much more sympathetic. I'm not good at going into places like Lush, and when I roll past it on Exeter high street I have to take a deep breath before I get within smell range and go past as quickly as possible without breathing it in, because although a lot of the individual smells are nice, the combination of them isn't and is also completely overwhelming, far too powerful.
Taste
Same sorts of experiences as with smell (which makes sense; the two are closely interlinked). I don't eat spicy things because they're unbearable and also wreck my tastebuds for the rest of the meal.
For a long time when I was growing up I couldn't eat things like pizza, spaghetti bolognese, etc, because there were multiple flavours and textures in the same mouthful and I couldn't cope with that; even now, where possible, I'll only eat a mouthful/forkful of one taste or flavour at a time because that was all I could cope with.
Stereotypically, I used to be a very picky eater. There were so many things I wouldn't/couldn't eat because the texture was uncomfortable or the flavour wasn't pleasant. It was a nightmare when we ate out because a lot of the time I'd end up with a plate of chips and that was it. There was also the fear of the unknown that's so common with us autistics, and I didn't want to cause a scene or waste my parents' money on something it turned out I didn't like.
I've got better as I've grown up and am more willing to try something new, although I'm still wary of trying something new in a restaurant/takeaway. Gideon's introduced me to loads of things, and it does amuse me that the two things my mum can't stand (spinach and mushrooms) are things Gideon got me liking! There are a few foods I still don't eat because I don't like them, and I can generally spot them a mile off! My husband knows better than to sneak peppers into anything because no matter what you do with them, I will taste them! Other foods I can only eat in certain ways, either because of taste or texture - I can't stand cooked tomatoes and I only eat cheese if it's hot and melted. But overall I'm a lot better and I eat most things; I'll never like peppers, celery will never be something I touch because of the texture and the stringy bits (they're unbearable and they get trapped between your teeth), and there are some other things I'll never eat because of taste and/or texture.
Touch
Clothing is a big one here. There are a number of fabrics that I cannot cope with having touching my skin. I'm really sensitive to the rougher fabrics, far more so than NTs, so I only wear soft things. Wedding-dress shopping was a huge challenge - on top of finding something that worked with the wheelchair and that wasn't strapless (which instantly ruled out a good 95% of dresses), there was the matter of finding fabrics that I could tolerate against my skin, a difficult challenge because tulle is a popular wedding-dress fabric. I tried on one that barely touched my skin before I started going "Nopenopenope!" The shop lady told me to put it on further and let it settle, but my friend Julie (who was with me) just turned round and informed her that she shouldn't do that because I'm autistic and hypersensitive to certain fabrics, and that if she insisted on me putting the dress on more I'd have a full autistic meltdown in her shop. It was particularly harsh tulle; I came across much softer tulle in other dresses and the dress I went with in the end did have tulle but it was much softer, though as it was, they put opaque satin under the tulle that would otherwise have been directly on my skin because of the sensory issues.
Growing up, I was a bit of a nightmare to go clothes-shopping with because of the hypersensitivity. It didn't help that I'm so long it was a challenge to find anything that actually fit! Once we'd got past that obstacle there was the matter of finding fabrics I could tolerate - no easy task on many occasions. It drove Mum up the wall! As an adult I'm still very picky about fabrics and I don't like ordering clothes online, partly because they probably won't fit but mostly because I can't feel them over the Internet like I can in a shop. I still hate clothes shopping, because of the combination of finding comfortable fabrics and things that fit (if I want a long-sleeved top I generally have to go to the men's section because women's tops don't have long enough sleeves; most trousers are too short).
How do I deal with overstimulation? Not well. Clapping my hands over my ears, rocking, screeching/keening, squeezing my eyes shut... In short, full meltdown. If it's a gradual intensifying of overstimulation I can get myself out of the situation prior to a full meltdown, but I don't always recognise the warning signs. I need somewhere quiet, with dim light (NO fluorescent lights), where I can calm down. If I can, I notify the people I'm with about what's going on. I also have communication cards because when I get too tired, stressed, overloaded, etc, I lose the ability to speak and not many people know BSL. My friend Hannah makes the cars as her job and they're absolutely fantastic; she has an "autism" set and I've got a lot of them because they're so damn useful! You can find them at Stickman Communications (and she ships to the US now as well!)
Day 11:
Talk about sensory issues. Do you also have sensory processing disorder? What kind of clothes do you wear? What foods do you eat? Are you sensitive to light or sounds? How do you deal with overstimulation?
I'd need to check my full diagnostic report for whether I have a formal diagnosis of SPD (sensory processing disorder) but I definitely have issues with sensory processing. A lot of autistics are either hyper- or hypo-sensitive in various senses; I have hypersensitivity in all my sense (because why be middle-of-the-road when you can go all out and be extreme?!)
Hearing
My ears are really sensitive; I often hear sounds that most other people don't and can pick up on subtle differences and discordances that miss NTs (and older people). It's quite handy for musical things because I can easily tell if something's slightly out of tune, and I can hear that approaching emergency vehicle before other people so I've got more time to prepare to pull the car over to one side so it can pass. And as I want to go into sign language interpreting, good hearing is pretty important!
However, a lot of sounds that don't bother other people, or cause only the mildest irritation to them, can be incredibly painful to me. I often find myself covering my ears to block out/reduce the sounds when it's not an issue for anyone else; occasionally in the past it would make me horribly self-conscious but, as is frequently the case for me, caring about what other people think is secondary to being comfortable and able to cope. And multiple sounds will blur together and form one big wall of unintelligible noise that can trigger a meltdown; if there are several different sounds around me, I can't tune out some and focus on the one I'm actually listening to, so I don't like being in those environments. My coping threshold varies - if I'm with friends and comfortable and so on, I can cope better than if I'm not doing so well mentally, I'm tired or other such things.
Sight
It's pretty difficult to extricate autistic hypersensitivity from the Irlen Syndrome; a lot of autistics have Irlen as well. My tinted glasses really help, as they filter out the wavelengths of light that my brain doesn't like (Irlen is a brain condition, not an eye one) - I have claret, yellow and two kinds of blue in my lenses, as well as distance lenses (I'm also short-sighted). But flashing lights are unbearable and can trigger meltdowns. I don't have super-vision or anything like that, thanks to my genetics (my mother is also short-sighted; as my husband also is, I suspect that any children we have in the future are extremely likely to be short-sighted as well!) However, I can pick up on details that other people miss.
Smell
Hypersensitive! I often pick up on smells that others don't, and smells that are pleasant for them can be unbearable and overwhelming to me. My father (undiagnosed but at least as Aspie as me!) used to get Indian takeaway every Saturday night (he's currently on Japanese every Saturday) and on Sundays he'd reheat the leftovers and have them for lunch; the smell was horrific, so strong that it made me feel ill. I'd complain to Mum about it and pre-diagnosis she'd always be a bit scathing, telling me not to be so melodramatic and that it's not that bad/as bad as I was making out. Now I have an official diagnosis and she's accepted it, she's much more sympathetic. I'm not good at going into places like Lush, and when I roll past it on Exeter high street I have to take a deep breath before I get within smell range and go past as quickly as possible without breathing it in, because although a lot of the individual smells are nice, the combination of them isn't and is also completely overwhelming, far too powerful.
Taste
Same sorts of experiences as with smell (which makes sense; the two are closely interlinked). I don't eat spicy things because they're unbearable and also wreck my tastebuds for the rest of the meal.
For a long time when I was growing up I couldn't eat things like pizza, spaghetti bolognese, etc, because there were multiple flavours and textures in the same mouthful and I couldn't cope with that; even now, where possible, I'll only eat a mouthful/forkful of one taste or flavour at a time because that was all I could cope with.
Stereotypically, I used to be a very picky eater. There were so many things I wouldn't/couldn't eat because the texture was uncomfortable or the flavour wasn't pleasant. It was a nightmare when we ate out because a lot of the time I'd end up with a plate of chips and that was it. There was also the fear of the unknown that's so common with us autistics, and I didn't want to cause a scene or waste my parents' money on something it turned out I didn't like.
I've got better as I've grown up and am more willing to try something new, although I'm still wary of trying something new in a restaurant/takeaway. Gideon's introduced me to loads of things, and it does amuse me that the two things my mum can't stand (spinach and mushrooms) are things Gideon got me liking! There are a few foods I still don't eat because I don't like them, and I can generally spot them a mile off! My husband knows better than to sneak peppers into anything because no matter what you do with them, I will taste them! Other foods I can only eat in certain ways, either because of taste or texture - I can't stand cooked tomatoes and I only eat cheese if it's hot and melted. But overall I'm a lot better and I eat most things; I'll never like peppers, celery will never be something I touch because of the texture and the stringy bits (they're unbearable and they get trapped between your teeth), and there are some other things I'll never eat because of taste and/or texture.
Touch
Clothing is a big one here. There are a number of fabrics that I cannot cope with having touching my skin. I'm really sensitive to the rougher fabrics, far more so than NTs, so I only wear soft things. Wedding-dress shopping was a huge challenge - on top of finding something that worked with the wheelchair and that wasn't strapless (which instantly ruled out a good 95% of dresses), there was the matter of finding fabrics that I could tolerate against my skin, a difficult challenge because tulle is a popular wedding-dress fabric. I tried on one that barely touched my skin before I started going "Nopenopenope!" The shop lady told me to put it on further and let it settle, but my friend Julie (who was with me) just turned round and informed her that she shouldn't do that because I'm autistic and hypersensitive to certain fabrics, and that if she insisted on me putting the dress on more I'd have a full autistic meltdown in her shop. It was particularly harsh tulle; I came across much softer tulle in other dresses and the dress I went with in the end did have tulle but it was much softer, though as it was, they put opaque satin under the tulle that would otherwise have been directly on my skin because of the sensory issues.
Growing up, I was a bit of a nightmare to go clothes-shopping with because of the hypersensitivity. It didn't help that I'm so long it was a challenge to find anything that actually fit! Once we'd got past that obstacle there was the matter of finding fabrics I could tolerate - no easy task on many occasions. It drove Mum up the wall! As an adult I'm still very picky about fabrics and I don't like ordering clothes online, partly because they probably won't fit but mostly because I can't feel them over the Internet like I can in a shop. I still hate clothes shopping, because of the combination of finding comfortable fabrics and things that fit (if I want a long-sleeved top I generally have to go to the men's section because women's tops don't have long enough sleeves; most trousers are too short).
How do I deal with overstimulation? Not well. Clapping my hands over my ears, rocking, screeching/keening, squeezing my eyes shut... In short, full meltdown. If it's a gradual intensifying of overstimulation I can get myself out of the situation prior to a full meltdown, but I don't always recognise the warning signs. I need somewhere quiet, with dim light (NO fluorescent lights), where I can calm down. If I can, I notify the people I'm with about what's going on. I also have communication cards because when I get too tired, stressed, overloaded, etc, I lose the ability to speak and not many people know BSL. My friend Hannah makes the cars as her job and they're absolutely fantastic; she has an "autism" set and I've got a lot of them because they're so damn useful! You can find them at Stickman Communications (and she ships to the US now as well!)
Monday 10 April 2017
30 Days of Autism Acceptance: Day 10
Day 10:
Talk about a cure. What is your opinion about seeking a cure for autism? Do you want a cure? Why or why not? And/Or Talk about stimming. Do you stim? How? What are your favorite stims? Do you have different stims for when you are happy or agitated?
I briefly touched on the topic of "cure" yesterday because it tied in with A$. I'm still rather tired so I'll come back to this subject another time, and apologies if this isn't the most articulate or well-organised of pieces.
I can in theory and intellectually understand why some people want a cure; I'm not going to deny that some aspects of autism can be very distressing to caregivers and also difficult because even as adults some high-support people are unable to manage their personal care etc. And when all you're told about autism is that it's A Bad Thing, that prospects can be very poor, that incompetences is presumed, especially when things like I Am Autism are the norm, I can see why people despair.
However, a complete "cure" would take away who that person is, their essence, etc. It would make them into a completely different person.
It's also important to not get other, co-morbid conditions mixed up with autism, which is something that happens constantly and does nothing to help matters. By all means, look into things that will enable us to be more comfortable and maximise our potential. But change our neurology, our very being? No thanks.
I don't want a cure. Neither do any of the autistics I know who've understood and accepted their diagnosis. If one were to be created, I would NEVER take it. I have accepted who I am and you know what? I'm glad I'm me and I wouldn't want to be anyone else; I wouldn't want to have different neurology. The same goes for many of my fellow autistics. My problems come from a society that doesn't understand or accept people like me. The solution isn't to eliminate us; it's to make the world accessible.
Despite what a lot of organisations want you to believe, many of us are perfectly happy with who we are - our big barrier is the lack of ACCEPTANCE of us. The understanding isn't there. The accommodations aren't there. The willingness to understand, accommodate and accept is not there. If society was educated and understood us, was willing to accept us and work to do so, we wouldn't have the barriers.
Change society, not us.
Yes, we're different. But we are just as human as non-autistics. Pushing the notion of a "cure" sends the message that we're not wanted, that we're something to be afraid of, vermin, parasites.
A cure is eugenics; it's that simple. An annihiliation of an entire group of people based on their neurology. We've all seen where that's gone in the past, and it's nowhere good.
Talk about a cure. What is your opinion about seeking a cure for autism? Do you want a cure? Why or why not? And/Or Talk about stimming. Do you stim? How? What are your favorite stims? Do you have different stims for when you are happy or agitated?
I briefly touched on the topic of "cure" yesterday because it tied in with A$. I'm still rather tired so I'll come back to this subject another time, and apologies if this isn't the most articulate or well-organised of pieces.
I can in theory and intellectually understand why some people want a cure; I'm not going to deny that some aspects of autism can be very distressing to caregivers and also difficult because even as adults some high-support people are unable to manage their personal care etc. And when all you're told about autism is that it's A Bad Thing, that prospects can be very poor, that incompetences is presumed, especially when things like I Am Autism are the norm, I can see why people despair.
However, a complete "cure" would take away who that person is, their essence, etc. It would make them into a completely different person.
It's also important to not get other, co-morbid conditions mixed up with autism, which is something that happens constantly and does nothing to help matters. By all means, look into things that will enable us to be more comfortable and maximise our potential. But change our neurology, our very being? No thanks.
I don't want a cure. Neither do any of the autistics I know who've understood and accepted their diagnosis. If one were to be created, I would NEVER take it. I have accepted who I am and you know what? I'm glad I'm me and I wouldn't want to be anyone else; I wouldn't want to have different neurology. The same goes for many of my fellow autistics. My problems come from a society that doesn't understand or accept people like me. The solution isn't to eliminate us; it's to make the world accessible.
Despite what a lot of organisations want you to believe, many of us are perfectly happy with who we are - our big barrier is the lack of ACCEPTANCE of us. The understanding isn't there. The accommodations aren't there. The willingness to understand, accommodate and accept is not there. If society was educated and understood us, was willing to accept us and work to do so, we wouldn't have the barriers.
Change society, not us.
Yes, we're different. But we are just as human as non-autistics. Pushing the notion of a "cure" sends the message that we're not wanted, that we're something to be afraid of, vermin, parasites.
A cure is eugenics; it's that simple. An annihiliation of an entire group of people based on their neurology. We've all seen where that's gone in the past, and it's nowhere good.
Sunday 9 April 2017
30 Days of Autism Acceptance: Day 9
#30DaysofAutismAcceptance
Day 9:
Talk about Autism Speaks. Do you support them? What’s your opinion about their policies? And/or Talk about special interests. Do you have a special interest? What is it? Feel free to infodump.
I would rather gouge out my own eyes with a spoon than support Autism $peaks.
(The substitution of $ for S is intentional and widely-used in the autistic community.) And I'm leaving the above statement alone to reinforce how much I mean it. I'm fairly tired today so this isn't going to be as in-depth as I might like, but it's a topic I will come back to when I'm a bit more mentally with it to do it justice. A lot of other Autistic writers have written a lot on the subject and I don't know how much, if anything, I can add to it. So here's a summary:
I might do a Part B post about special interests later.
Day 9:
Talk about Autism Speaks. Do you support them? What’s your opinion about their policies? And/or Talk about special interests. Do you have a special interest? What is it? Feel free to infodump.
I would rather gouge out my own eyes with a spoon than support Autism $peaks.
(The substitution of $ for S is intentional and widely-used in the autistic community.) And I'm leaving the above statement alone to reinforce how much I mean it. I'm fairly tired today so this isn't going to be as in-depth as I might like, but it's a topic I will come back to when I'm a bit more mentally with it to do it justice. A lot of other Autistic writers have written a lot on the subject and I don't know how much, if anything, I can add to it. So here's a summary:
- They speak ALL THE TIME and claim to speak for us but they don't listen to us; they actively shut us down when we tell them they're wrong, when we tell them our preferences, when we question them in any way - I've been shut down, silenced, kicked off one of their pages for daring to use identity-first language (and getting shouted at by AWPs who told me I didn't know what I was talking about) and for questioning the accuracy of one of their posts, and I've come across a number of other people who've had the same and who've been harassed by A$ for expressing their feelings and for speaking
- For a long time they had no autistic representation at all; John Elder Robison was the last one but he resigned in 2013 because he overwhelmingly felt that A$ weren't listening to us (you can read his letter here); recently they've got a couple but I, and many others, aren't convinced and feel it's nothing more than tokenism, a way of trying to win us round and persuade us to support them, rebranding themselves - it feels too manipulative and inauthentic
- It's only recently (in the last couple of years, if I remember rightly, though I'll need to check) that they've stopped pushing the vaccines-cause-autism lies despite it being repeatedly debunked, and they've never apologised for it
- Only 3-4% of all the money they raise goes to actually support for families with autistic children (they've generally not been interested in supporting autistic adults); they pay a lot of their staff ridiculously high salaries, way beyond what's needed to live comfortably, and they've paid a number of speakers insane amounts as well
- Since their inception they've pushed for a cure, genetic testing and so on; about a quarter of their money goes into research. While in theory I'm not opposed to identifying autism genes if it will enable people to be identified much earlier (I was 28 when I was diagnosed and could have been saved many years' struggle if I'd been picked up at a young age) IF it means that they will more easily be able to access appropriate support, the reality is that it doesn't mean that, it means the enabling of eugenics, which means finding specific genes that they can then eliminate - after all, one of A$'s long-term goals has always been to eliminate autism completely. "Cure" also means elimination of autism, elimination of people like me and so many of my friends. It means completely changing our very essence. If I were to be "cured" I would be a completely different person. I will never take any kind of "cure".
Recently they've changed their mission statement to remove the word "cure, but it strikes me as nothing more than a publicity stunt, more effort to manipulate autistics into thinking they've changed and are better, into supporting them. Especially because they talk about a "solution" - which, let's face it, is just another word for "cure" and it's pretty damn obvious that that's what they're going for. And a lot of us in the autistic community can't stop our brains from adding the word "final" before "solution" (I'm not just saying that; check out Un-Boxed Brain on Facebook for supporting articles). - Language use by A$ is generally pretty dehumanising. They presume our incompetence, they persist in pushing person-first language even though we've told them again and again and again that the vast majority of us favour identity-first language, they talk about us as "broken", "a burden", "a tragedy". They never talk about any of our positives; they focus solely on the negatives, because to them, we have nothing good to offer
- And speaking of language, I Am Autism, their short PSA film from 2009. Look it up. It's truly horrific. It contains lots of the most dehumanising language regarding people like me that I've ever heard and if you want to have any idea of how they truly see us, this is it. They have never apologised for it, never said that they regret it. Nothing. It still sits there and people still watch it and believe it.
- MSSNG - a campaign of theirs that pushes the notion that we are broken, trapped, a "normal" person held captive by autism. I am not broken. I am not trapped. I am not held captive by my neurology. It's more dehumanisation and demonisation of us and it is NOT ACCEPTABLE.
- Did you know that their Light It Up Blue campaign inherently ignores autistic females? Blue is associated with boys (these days, at any rate), and they chose blue because most people diagnosed with autism are male (though there have recently been improvements regarding the undiagnosing of females, there's still a long way to go). By using blue they are sending the message that they don't care about autistic females.
- Refusing accommodations - a woman got a job with them, asked for accommodations because of the care needs of her autistic son (nothing difficult), and then they withdrew the job offer; for an organisation that's supposed to be about autism and helping people affected by it, they've got a funny way of showing it; there's never been any kind of apology from them for it
- A$ has a long history of supporting/being apologists for murderers; this is specifically regarding parents who murder their autistic children because they "can't cope" any more (Issy Stapleton, Alex Spourdalakis, etc). A$ tends to express sympathy and pity for the parents and support them, helping them get off with lesser charges, encouraging the public to side with the parents because these children were such burdens etc. You know what, A$? Maybe if you stopped using so much of your funding for your outrageous salaries, event costs and so on, maybe if you stopped throwing so much money into a eugenics agenda that autistics have repeatedly said we don't want, perhaps you could use that money to help way more families that need it than you currently do!
- The Judge Rotenberg Centre is a centre that A$ has allied itself with that regularly practises ECT (electroconvulsive therapy - electric shocks to the brain) on autistics and promotes it as a "treatment", often without the autistic person's consent; many autistics have spoken out against it and it's caused permanent damage to people.
I might do a Part B post about special interests later.
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