#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
#30DaysofAutismAcceptance
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.
Subscribe to:
Posts (Atom)