Hi, everyone. First of all, I’m sorry I haven’t been putting stuff up lately – truth to tell, I’ve been more interested in reading other people’s posts and thinking about them than writing my own for the last few months. (As a result, there may be a flurry of recommended posts coming up soon.) But I was thinking yesterday about a situation I’m in, and decided that the results of that would likely make a good post.
So, I was taking a look at my stats (yay, people are interested in my analysis of the problems with the SD article!), and I noticed a referring link from www.lunalindsey.com. I went, okay, I haven’t seen this before… so I clicked on the link.
The post is titled: Splines Theory: A Spoons Metaphor for Autism. In it, Ms. Lindsey looks at the spoons metaphor for dealing with energy resources with invisible disabilities, and some issues she has with it, and provides a new metaphor for exploring what’s going on that causes us to have energy drains and difficulty changing routines and such. (And a commenter adds another metaphor, for those who aren’t a comfortable with computer-oriented ones.)
It’s a rather interesting look at things, and resonates with me. Quite a bit. It makes sense – even more sense than the spoons metaphor (which is incorporated into the Splines Theory as a whole). I like it.
So I’m recommending this post. 😉
This is very much an aside, not a standard post, but I think it needs to be said.
Sunday, I posted a recommendation link post to Nick Walker’s “What is Autism?” I then proceeded to go and read his entire blog (called Neurocosmopolitanism). There aren’t very many posts there at the moment (from what I can see, he’s quite the busy man – and there is a new one up today), but the ones that are, are well thought-out, and thought-provoking.
One of those posts – the second one – has a very long title: Throw Away the Master’s Tools: Liberating Ourselves from the Pathology Paradigm. I’m not going to go into loads of details here – that will be reserved for the recommendations post I intend to put up sometime this week – but there is something important that I want to say straight out.
This post – with its description of the pathology paradigm, how it damages us and impoverishes society (not necessarily mentioned, but I’m a firm believer in the “Patchwork Quilt” society, rather than the “Melting Pot”), and its suggestions for how to build a neurodiversity paradigm (that is not solely about autism, but other “conditions” involving differences in neurological wiring) really made me think. And one of the things that most made me think was about language use, and how it affects our views of ourselves. In particular, the term “Autism Spectrum Disorder”.
Nothing wrong with the term “Autism Spectrum”. That’s a very good term. It’s the “Disorder” component that Mr. Walker takes issue with, and argues against very well indeed. He points out that using the term “Disorder” makes it appear that there is something “wrong” with us – which is exactly the sort of thinking that autistic advocates are trying to fight. That the neurodiversity community is trying to fight.
So. I have gone through my links list, and changed each description/category of “ASD” to “Autistic”. I have not yet decided whether I will do this to my posts or not – I suspect not, simply because they provide a record of how I thought at the time. But the change has to start somewhere, and who better for it to start with than ourselves and our allies?
[Added Note: I have also changed the title of my post category and tag of “ASD” to “Autism Spectrum”.]
This is a guest post on the blog Raising Rebel Souls. Nick Walker is autistic, and has come up with a description of autism that matches my own experience and, as I understand it, the experiences of the majority of my fellow autistics, no matter where they might fit on the spectrum. He also removes the pathologizing element from the equation / description, and writes clearly, presenting facts as they are known.
I highly recommend that everyone read this post: Guest Post from Nick Walker: What is Autism?
MedicAlert® Canada (officially “MedicAlert® Foundation Canada“) includes “Autism Spectrum Disorder” (as well as “Autism”, “High-Functioning Autism”, and “Kanner’s Autism”) in the list of conditions that they can include on one’s record. I just joined yesterday, because my mother has been worried that if I ever end up in an accident, or some other situation where I could panic and lose my speech, or end up unconscious, emergency responders might not realize that I’m autistic, and that could be part of the problem. (There’s also the concern about cops, and if I ever get taken in for some reason or another – there have been incidents in Newfoundland with the cops misunderstanding autistic behaviours as drunk or drugged….)
Most people (in Canada and the US, at least!), I know, have at least heard of MedicAlert, and know the symbol and what it means (aka that the person wearing it has certain conditions, and to know what they are, flip the ID symbol). But I’m not sure that people necessarily understand the details of how it works.
NaNoWriMo (and over the last couple of years, Camp NaNoWriMo) is a big thing for me. But this year, things got off to a slowish start, mostly because my conscious awareness of the whole “Camp NaNoWriMo’s First Session = April” was entirely absent until this morning.
*shrugs* Happens sometimes.
So, there I am, forgetting completely about it, and reading blogs about Autism Awareness Month and all that… and what should pop into my inbox but a note about Saturday’s Marathon Writing Session.
*tagAught blinks at email, and goes, “Huh. It’s Camp NaNo already?” pauses “Gah! April’s already one week gone! Write! Need to write! What to write?!”*
According to the Autism Society of Newfoundland and Labrador website and VOCM (the community radio station), the ASNL and the Royal Newfoundland Constabulary are going to be cooperating on creating a voluntary autism registry. Why?
So… it’s April 2nd. World Autism Awareness Day. Everyone’s posting about it. Everyone has their own opinions on the differences between “Awareness” and “Acceptance”, and what that means for those of us on the spectrum and our allies.
Well, the Autism Society of Newfoundland and Labrador had their Adult Autism Group panel tonight. Unlike what I originally thought it was going to be, it wasn’t each of us (3) making a presentation on a topic; it was five of us having a discussion panel with three questions – one about the stresses of passing for normal, one about the school system, and one about creativity / imagination – as topics, and then open question time for the audience.
It went very well, I think. (So do my parents.) It was surprisingly enjoyable, and we talked about a number of things, including sensory issues, social issues, energy drain (spoons), teachers, special ed, writing, movies, music, visual art, Asperger’s and the DSM-5, disclosure, questions about what we feel when someone goes, “Oh, now I understand” after an explanation of autism, and so on.
I also had – for exhibits of my creativity – the memorial poems for my grandmothers, the 50th birthday poem for my father, two novels-in-progress (It Came From the Library being one of them), and my Earth: Final Conflict series Dreams, Memories and Truths.
I also got to meet one of the better-known autism advocates here in NL (he was the one who asked the question about disclosure), and that was a pleasure.
Had a great time!
The Autism Society of Newfoundland and Labrador is celebrating October as Autism Awareness Month. To do this, one of the things they’re arranging is a series of talks, incorporating subjects such as naturopathy, nutrition, etc. There’s only really one I’m interested in, however.
On Wednesday Oct. 30th, the Connections (Adult Aspies) Group is going to be having an “open house” (so to speak) panel; the topics are planned to include such things as sensory issues, anxiety, social issues, and available resources. At the moment, the plan is for 3-4 people to speak, and then have an “open floor” where questions can be asked.
The reason I’m particularly interested in this meeting is that I’m going to be one of the panelists speaking; my focus is going to be on sensory issues (with perhaps a bit of info re creativity and assuming competence thrown in). I essentially figure that if I want to be a self-advocate, I’ve got to start somewhere, and why not with something like this?
I have a basic plan of what I intend to say: intro to the fact that humans actually have seven senses, rather than just the five obvious ones; an explanation of proprioception and vestibular senses (to explain the sixth and seventh); and then an explanation of some of the issues that ASDers tend to run into when it comes to sensory issues – quick and succinct, but hopefully providing enough info that the parents (it’s likely to be parents, mostly, who attend) will understand a bit better what their children are going through. I intend to touch on hyper-sensitivity, hypo-sensitivity, the fact that one can have opposite reactions to different things in the same sense (I know someone on my blog circle, can’t remember who, loves spicy stuff but can’t tolerate the taste of mint), and hopefully mention a few potential coping strategies (including the fact that stimming is often a method of trying to cope with the overwhelming sensory influx that we live with). If there’s time (I’ll likely have maybe 15 minutes to talk), I also intend to mention the theories about how it’s possible that our impaired understanding of emotional and body language cues might actually be because of our sensory issues, rather than them being separate things that just happen to fall under the common umbrella of ASD symptoms, and also about the possibility that “emotional sense” is also a sensory input that we can end up overwhelmed by.
The thing is, I’d also like to provide some further sources for people to look into. I intend to have sheets to pass around with blog URLs, but if anyone has any blog posts specifically about sensory issues that they think might help educate people, and wouldn’t mind if I put those direct links on the sheet, could you please let me know? Also, if there’s anything that you think I should consider mentioning about sensory issues (whether I’ve listed it above or not), I would welcome your thoughts. There’s no guarantee that I’ll be able to include all of the suggestions (considering potential time constraints), but even just knowing what others think is important to mention could help.
A lot has been happening in the autistic world lately, most of which I’ve found out from other blogs on my links page (check them out, those who are new here!). There’s what happened to Issy – I think that Ariane (from Emma’s Hope Book) and especially Love Explosions (from Love Explosions), and their commenters, have said things more eloquently than I can manage. Please, take a look at their blogs, and at what they’ve written about the situation; it’s really, really important. There are certain of their posts that I’m going to recommend specifically a bit later on, but… just read, please.
But that isn’t the main point of this post – just something I think is really important for everyone involved in the autism world – whether autistic, autism parent, or autism friend – to read through and think seriously about.
The main point of this post is what’s been happening with me lately, and what happened yesterday, and what it made me think about.
Happy Canada Day, Everyone!
Hope all my fellow Canadians have a good day!
This next post was originally going to be my long-delayed one about Stims. But this morning, Dad and I went out to brunch (Mom’s down in Halifax with my sister’s family, helping out with the new baby, for several weeks), and on our way back, the CBC Radio Sunday Edition had a section on bullying. Specifically, about how one should respond to bullying, and whether at times violence in response is warranted. It made me think. A lot. And I thought it was definitely worth a “Let’s Talk About” post.
Okay, I’m still doing the storifies of the Autism Upsides on Twitter (because I think it’s a great campaign). There haven’t been very many posted for June so far, but I’m hoping there will be more before the end of the month.
First of all, my apologies to any friends who might have been worried about my long absence; the past month has been somewhat crazy for me.
We’re not going to let the end of April stop us. Let’s keep on with the Autism Upsides! Here’s the Storify for May 2013, everyone; read and enjoy the positive things that are a good part of autism.
Today is Autism Positivity Day 2013, and the theme for this year is “1,000 Ausome Things”. We get enough of hearing about the bad things about autism; let’s hear about the good things! For my contribution, see the list below…. (Note: I’m taking a few of them from my contributions to the #AutismUpside campaign.)
And now, as we approach the end of April 2013, we’ve got Week 4 of the Autism Women’s Network April Autism Upsides campaign. And we’ve got the Autism Positivity 2013 Flash Blog coming up as well, which the contents of this campaign can help with! So, enjoy the last two days of April (May will be a new Storify) with the Autism Upsides campaign!
Hey, everyone! This is just a short post to remind people that Autism Positivity Day 2013 is coming up on Tuesday (April 30)! The theme this year is “ausome” things about ASD – the flash blog is trying to come up with at least a thousand of them. As the intro post says, we all know a lot of the bad, unpleasant or difficult things that accompany autism; we live with them every day. But there are good things too! So let’s get those lists started!
And to prompt you, feel free to read the Autism Upside Storifies of the past few weeks (each word is a link to the different storify posts)! (Now including Week 4!) We’ve got you started, let’s keep up the good work!
And… onto Week #3 of the #AutismUpside campaign on Twitter! We’ve got more coming in, so pop in and take a look!
My Mom is still working on making connections with Eastern Health, trying to get services for me so that I can live independently. I’m working (somewhat – I seriously need help with motivation, depression has me in its grasp) on getting Income Support and Employment Insurance. I’ve filled out the forms and stuff, now it’s mostly waiting.
But for Mom… she keeps running into the same old problem. “If she has an IQ of higher than 70, we can’t help her.”
The Autism Upsides campaign on Twitter has been going wonderfully, to the extent that the storify I set up last week has become extremely long. There have been so many tweets coming in; definitely something for all of us to be proud of. In order to ensure that people who have already read most of it don’t have to go through clicking “Read More” a ridiculous number of times, I’ve decided to split the Storify of the Autism Upsides campaign up into weeks, rather than just have one for the entire month.
So, here is Week 2 (Monday April 15th to Sunday April 24th, 2013) of the Autism Women’s Network #autismupside campaign on Twitter.
Another flash blog. This one prompted by the Autism Speaks video “I Want to Say”, which was supposed to be about autistics using AAC… but no communications from autistics were actually shown. Which renders the supposed purpose of the video useless. Read more about it here, at the flash blog.
I’m verbal. I don’t need AAC to communicate. But I am by far more comfortable communicating in email and text and via the computer than I am face-to-face (or, gods forfend, on the phone). I am autistic.
I want to say: Autism Speaks, I don’t like you. Things like that video are fear-mongering and hate-promoting. Things like that video portray us as less than human. We are not.
Okay, Musing of an Aspie‘s “Take a Test Tuesday” has now changed over to “Take a Survey Tuesday”, at least for a month. I highly recommend them; the questions are asked by ASDers for other ASDers. The first one, now up, is about relationships – friendships, family, romantic.
So, what are you doing still over here? Pop over to her post and either fill out the survey on Survey Monkey, or answer in the comments!
Today is the flash blog day for Autistic People Are, a follow-up to last week’s Autistic People Should flash blog. I’m not going to write a terribly long post today, because what I have to say is fairly short.
Autistic people are fellow human beings.
Yes, “fellow human beings” is emphasized. Because that’s how we should be treated.
Please, think about that before you start trolling or hating.
[Edit: Mar. 03/13] Check out Unstrange Mind’s post about Autistic People Are; it gives details about what these two flash blogs are all about, and what’s been done so far. [/End Edit]
Today is the “Autistic People Should” flash blog day. It’s being done because when you type “autistic people should” into autocomplete search engines, you get some pretty disgusting top searches (for details, check out the Autistic People Should blog, and some of the posts there – I’m not going to honor that search by typing any of those terms into this post). (Warning: Can be triggering.)
I had a hard time coming up with answers to that question. (Speaking of questions, I highly recommend reading Musings of an Aspie’s post on Autistic People Should in particular – it has some excellent details and suggestions.)
But I was thinking about it this morning, and I found myself coming up with some interesting (and hopefully much better) ways to complete that sentence.
Autistic people should be able to be themselves.
Autistic people should not have to be ashamed of / angry about / embarrassed about / humiliated by who they are.
Autistic people should not have to conform to the social mores of allistic / neurotypical society. (Please note that I’m not saying anything here about the “moral” mores. What I mean is that we should not be expected to want to go out a lot, make lots of friends, enjoy loud and bright places, etc. We should still be held to the standards of not hurting people and the like. We are perfectly capable of that.)
Autistic people should be able to live in the way that they prefer. (Independent, independent with support, etc.)
Autistic people should be accepted / respected for who and what they are.
Autistic people should not be looked down upon as “defective” or “damaged”.
Autistic people should be listened to about who they are and what they want.
In other words: Autistic people should be treated like human beings, because that is what they are.
[Edit: Feb. 23/13 @20:40] Unstrange Mind has also done an Autistic People Should post focused on the fact that we are all human beings.
Okay, I’ve been under a fair bit of stress lately, some of it from sensory overloads and the like at my work placements, and some of it from financial and personal stuff at home. As a result, I’ve been really short on spoons lately (thanks to Unstrange Mind, who linked to the explanation, which I’ve passed on to all my colleagues!), and feeling the fatigue. And my internship ends the end of March, and that means that I need to find a new job.
But things have changed since I last held down a job I could tolerate for longer than a couple of weeks without constant meltdowns. I have a lot more awareness of my needs now, and of what overloads me, and I have a stronger, better support system as well (my fellow bloggers as well as my local Aspie friend – my online writing Aspie friend I’ve had since before I was at that long-term job – and my parents have a lot more awareness as well). Read on….
Pretty big post for my second one, but some of the other posts I’ve been reading have prompted me to put this on my own blog. Most of this post is actually written in response to two other posts, in Flappiness’s blog: Silencing Ourselves: A Plea for Civility in the ASD Community; and Civility is Simple, not Simplistic: A Response. Check them out; they have some really good points.
So, without further ado:
Just because people disagree with what you think is no reason to throw civility out the door. And yes, when you’re civil, it’s a lot more likely that people will listen to you, and at least consider your point. If you call people names, etc., they’ll feel hurt, and they’ll ignore you and whatever you’re trying to say. Which can be quite damaging when you’ve got a good and / or important point to make.
But there’s another element to that in the ASD community. Read on to understand