This October, the Autism Society of Newfoundland and Labrador is celebrating Autism Awareness and Acceptance Month with the theme of “Ask About Autism”. The (genius) brainchild of the Advocacy and Communications Manager, Tess Hemeon, Ask About Autism involves activities all month long encouraging people to ask questions to professionals and autistics about autism. Something I can thoroughly get behind, because how can we teach people what they want to know if they don’t ask? (Yes, we can tell people things; but those may not be the things they feel they need to know.)
*shocked gasp* I never knew there were telepaths living among us!
How many times have you heard someone say a variation of, “Oh, c’mon, it’s not that” [or “It’s not at all”] “loud/bright/smelly/painful/bad-tasting/etc!”?
This is a classic case of experience invalidation: Someone saying that because they don’t experience stimuli and perceive the world the same way you do, your way does not actually exist in reality.
So, the ASNL this semester (spring) has arranged for a yoga for autistics… practice? workshop? whatever…. Four weeks, Sunday mornings. There are a total of five of us there, and like in Social Club, I’m the oldest (although with yoga, our instructor is older than I am). And during this morning’s session (our third), I noticed something interesting.
One of the others there, who is less than half my age… is a lot like I was when I was her age. A lot like I was, at least in social elements (well, from what I’ve been able to tell during the three hours I’ve spent with her so far). Things get blurted out when she thinks of them, no matter how “inappropriate” it may be at the time. She shares details with near strangers that you might think more appropriate to just share with friends. (I mentioned those two items to Mom, and she was nodding and going, “Oh, yes, I remember you being like that”….)
And there is no better way that I can think of to know that I have changed, than to realize that there’s someone else who is like I was, and am not (at least partly) anymore. (I have more restraint about blurting things out, and a bit more restraint about sharing things… although not as much of the latter, witness the very existence of this blog!)
It’s also proof, in living colour, of the “Autism is a Delay, Not a Stop” matter. I’ve changed. I have more awareness now of social appropriateness. I have more impulse control. But I used to be just like her.
We grow, and learn, and change. We just do it at a different rate than allistics/neurotypicals.
Please, parents, specialists, everyone… remember that. Simply being autistic does not mean that we will always behave/act/react the same way as we do now.
Ellen Notbohm, the mother of two children, one of whom is on the spectrum, has a number of books out about children on the spectrum, acting as the voice for her son. One of them, Ten Things Every Child With Autism Wishes You Knew, is now in the ASNL Barbara Hopkins Library. As I was early to Social Club today, I noticed it and decided to read it to see whether I agreed with what was in the book.
My personal answer? It’s excellent. There are some minor things that I disagree with (noted below), but the vast majority of it (and every one of the “Ten Things”) involves points that I am in full agreement with. It’s also both well-written and quite respectful of autistics. (Including the fact that although she uses “child with autism” throughout, she both explains why she prefers not to use the term “autistic”, and also that a number of children, when they grow up, prefer to be referred to as “autistic” rather than “adult with autism”.)
My dad follows the BBC for the quality of their reporting, and sometimes finds interesting tidbits on there. This was one of them. Very positive message here. You go, Iris and Thula!
Turns out there’s also an article on CNN about Iris and Thula, which goes into greater detail about Iris’s accomplishments as an artist.
Thanks to Autism Canada for that link!
And now that I’m back in St. John’s, I’m resuming the talk about storybooks! Specifically, this post is to look at the issue of face-blindness and bullying.
While I was in the CAPP meeting a week and a half ago, I brought this topic up over lunch, and got some great suggestions for how people who are face-blind can deal with “recognizing/identifying” bullies. I’m going to list them here. If anyone has other possibilities, ideas, suggestions, solutions, please let me know – I’d really like these Spectrum Storybooks to be as comprehensive as possible.
I’m the oldest of four siblings (the only autistic thereof, as it happens). Two sisters – and a brother (who has given me a sister-in-law and my two younger nieces) but this post isn’t about him. (Sorry, Bruder mein!) This is about my sisters, and how wonderful they are.
But first… one issue that I’ve faced through most of my adult life, though it’s not one I talk about to many people, is that except in very rare cases – for me, Out Of Sight does indeed mean Out Of Mind. This has even included my siblings… partly because of my childhood experiences with the communications chasm that can occur between autistics and allistics, and partly because, well, I’m often not the best communicator unless it’s about something of immediate importance to me. (Not to say that my family and friends aren’t important, but if they’re not right at the forefront of my mind, I can go weeks without thinking to contact them.)
So, here’s the thing. When I was at Social Club this afternoon, our facilitator mentioned that she’d been looking in the ASNL Library for resources – storybooks – to help some parents explain certain things to their children. Unfortunately, she wasn’t too happy with what she found – some she liked the wording but not the illustrations, some she liked the illustrations but not the wording, and some were “yuck”.
Because we’re a pretty creative group, she came up with the idea that maybe we could go ahead and write (and illustrate) some of these missing resources. We all loved the idea. So, one of the first things we have to do is research – and I’m turning to you. Autistic adults – what (of the subjects listed below) would you have wanted to read to help you as a kid? Autistic teens, what about you? Parents, can you ask your kids? Do you have any suggestions for wording? Are there any other subjects you think would be helpful? And if we’re satisfied with what we produce… would you like us to publish them?
I was just (less than an hour ago, as I write this) reading the most recent post Unstrange Mind put up on her blog, entitled I have a depressing, socially-isolating disease. In it she explains about how celiac and Non-24 (see her post for details) affect her in ways that are depressing, socially isolating, and very much not good for her overall health; in contrast to autism, which is not something isolated from her “self” and has a number of things about it which make her happy.
That post got me thinking, and it reminded me of a question that I think I remember my father asking me at one point, about the effects of autism vs. the effects of depression, and why I considered them to be different (the context being about how “curing” autism would make me a completely different person). I think I now have an answer.
It’s early morning April 30th as I’m starting to write this post, which is highly ironic, as I should be sleeping right now. Unfortunately, houses in St. John’s don’t seem to have soundproofing, and the housemate whose bedroom is next to mine is talking on the phone.
But aside from that, this topic is more than just a positive one, it’s a pertinent one for me this year. (And likely to be a long post, with many examples.)
The following is a letter that I will be sending to the Board of Directors of the Autism Society of Newfoundland and Labrador concerning the “Light It Up Blue” campaign. At the bottom of the post is a link to the PDF version.
Dear Mr. Crocker and Members of the Board,
Once again this April, St. John’s/Newfoundland has tried to demonstrate and/or encourage “autism awareness” (or “autism acceptance”, as most autistics prefer) by “Lighting It Up Blue” on Cabot Tower and the Confederation Buildings. And I really have to protest.
So, at Social Club (at the Autism Society for NL; it’s basically a small group getting together for social activities – playing games, doing art, etc.) this past weekend, we had a new person there. And that person mentioned that xe was obsessed with one particular topic (I can no longer remember what it was, that wasn’t the important thing), “like with OCD” (obsessive-compulsive disorder).
On my post about Hyper-Focus vs. Lack of Focus, Unstrange Mind called me on using the term “special interest” for interests that we have and like to focus on – a term that I used to replace the term “obsession”, which tends to carry a negative connotation. She suggested using the term “passion”, which I thought was a very good idea, and have since cleaned up my vocabulary that way. 🙂
Anyway, getting back to the topic of the post, I was rather disturbed by the way that person was using the term “obsession” to define a particular area of interest, because at one point, my mother suggested I might be OCD, and I asked my psychologist about the matter. And what he said was something of an eye-opener.
So, another April post. This one also about things near and dear to our hearts – stimming. (No, it’s not the post I’ve been promising for two years now. Sorry. That one’s still going to take some time to do.) No, this one is a first look at Musings of an Aspie’s company, StimTastic.
Note that I say “first look” because I haven’t yet received any of their products. However, hopefully next month after my birthday I’ll be able to provide some specific product reviews…. 😉 (Yes, some stuff from StimTastic is first on my birthday list.)
Heh. Remember when I said in the last post not too expect too many recommendations this month, despite the posting volume on Autistic-oriented blogs? Well… there was another wonderful post put up today that really needs signal boosting.
Unstrange Mind is doing a series this April for the Blogging from A-to-Z Challenge (check the following post for the link if you’re curious), and she’s hitting things hard, the way they need. And today’s post (well, all these posts she’s writing, but today’s happened to strike me) is about something that is a huge problem in trying to gain acceptance for autistics. The Empathy Question.
Please, read through the post E is for Empathy – it highlights a number of problems with the idea that autistics have no empathy (talk to my mother, or my best friends; they’ll dismiss that idea immediately). It even mentions a new study that brings to light some problems with the “well-known” Sally-Ann Test, a study that I hadn’t heard about before.
Not to mention the ludicrous treatise she mentions that says something about since autistics have no empathy, we have no sense of community. *cough, cough* Um, what do you think my blogroll list is?
Anyway, she also provides links to another blog post about empathy, that in turn provides links to more. Please, take a look at them, and absorb the message we’re trying to send.
So, it’s World Autism Awareness Day – or, as the vast majority of autistics prefer to refer to it, World Autism Acceptance Day. (Check out World Autism Acceptance Month!) And what, one wonders, are the savvy, internet-connected autistics of the world wearing this month?
I can tell you one thing. It’s sure as hell not blue.
The Autism Society of Newfoundland and Labrador is holding a fundraiser for their library at the Chapters on Kenmount Rd. (just up from the Avalon Mall) in St. John’s, from 7pm to 9pm tonight. A percentage of the prices of all books bought during that period will be donated to the Autism Society by means of a Chapters/Indigo gift card, in order to help expand the ASNL Library.
So, at about 3am this morning when I was trying to go back to sleep (after being woken by the plow backing up in the lot behind our house – why doesn’t St. John’s believe in soundproofing houses?!), I remembered where I meant to take yesterday’s post on brooding. Scripting!
(Note that in this case, I’m really talking about a specific subdivision of scripting: putting together something in your own words, rather than either copying someone else’s – still a valid form of communication – or repeating a set of words and actions over and over, to either deal with something or because it’s a comfortable routine, for whatever reason, or any other reason that one might do that. There are bound to be other reasons out there. :))
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 post is a followup to Let’s Talk About: Imagination and Modes of Thought. Partially because while I wasn’t entirely wrong about my “mode of thought”, I wasn’t exactly correct about it either; and partially because there’s a new Tumblr blog out there called “Autistic Thinking” that I recently stumbled across. The aim of the Autistic Thinking blog is to: “[describe] the different and possibly unusual patterns of thought and perception experienced by autistic people of all types. It’s meant to show how diverse we actually are, compared to the simplified ideas other people have of us”, to quote the blog description. And reading it, I got inspired to write this post, because of my recent ruminations about how exactly I do think.
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?