Category Archives: Acceptance
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.)
April 2nd. WAAD. Officially World Autism Awareness Day, though I can’t think of an autistic I know who doesn’t feel it should be World Autism Acceptance Day.
This was going to be a very short post, because today I did most of my “getting my point across” on Twitter. But then I decided to look at this a different way – what have I done over the past year to contribute to Autism Acceptance?
Because for once, I can answer that I’ve done more than maintain my blog.
Last year, I wrote a letter to the ASNL about Light It Up Blue (which the ASNL continued this year, unfortunately) – it’s also been passed out to Autism Canada’s leadership.
Since then, I have also joined both Autism Canada’s ASD Advisory Board, and the Canadian Autism Partnership Project ASD Advisory Board. I have been part of discussions about creating conferences specifically for autistics in Canada, and about building a Canadian Autism Partnership. I’ve made friends with more autistics throughout Canada by this – really good friends at that. And those have helped me gain the confidence both in myself and my views of being autistic to speak out even more.
I have also started work on the project that my Social Club group is calling Spectrum Storybooks. It’s going to be a long-term project, but will be so useful. Something like that is needed, and we’re going to help fulfill that need.
So I don’t know about the world as a whole – there’s still a lot of things wrong with the public view of autism – but I’ve done things this past year that I can be proud of. And that? That’s something worth celebrating.
So, the website for Autism Canada has just gone live: autismcanada.org. I’ve been poking around, and so far it looks fairly good. I have, however, felt the need to send them a copy of my letter about Light It Up Blue, since that’s one of the National Awareness campaigns they have listed. I have also joined their forum under the username tagÂûght (just waiting for official approval), so anyone else who wants to join is welcome to discuss this blog with me. 🙂
Still poking around, but note that they do have the DSM-5 criteria listed, including the severity criteria (3 levels – I’d say I’m either level 1 or 2 in communication, and level 1 in “restricted” interests, although my sensory issues might push me up to level 2 in that as well).
They also have a directory, called Autism Junction, at autismjunction.ca, which has a wide variety of service providers for autistics, both child and adult. It’s not complete, but is still under construction; there’s a form to fill out for any service providers who aren’t listed already. (I’ve sent an email to two that I know of, advising them of this.)
Going to be seeing if there’s any way that I can include blogs in the list of resources, and let them know about my blog. 🙂
[Edit] Under “About Autism”, they have a good listing of co-morbid diagnoses, and what may indicate one (I’m going to check out the PDF they include for further details). However, the “Evolution of Autism” page is not about how autism can evolve throughout a person’s life, it’s about the recognition of autism since Leo Kanner first identified it. Honestly? I think details about how it can change throughout a person’s life would be more useful. [/end edit]
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.)
So, I finally have (and am putting up) the results of the ASNL fundraising promotion at Chapters on April 1st.
Together, Chapters and the Autism Society of Newfoundland and Labrador managed to raise $206.19 (Cdn) for the ASNL Library fund. Yay! And Chapters is also interested in doing more with the ASNL – Double Yay!
So, thanks to everyone who came out and contributed by buying books during that period; it helps a lot.
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.
There are a lot of good posts going up for April that have nothing to do with Autism Speaks (at least, not directly), and I honestly wish I could recommend them all, but I’d probably overload my blog with posts if I did that. (Though don’t be surprised to see a few of them going up as rec posts over the next few months! Also, feel free to poke around my links page and check out the blogs I’ve got there, most of which I would be recommending from.)
This post on autism awareness by Andraya, of Asperger’s and Me, definitely needs to be signal boosted and pointed out to people, however. It points out something to people that helps explain part of why Autistics in general have no interest in being “cured” of our autism. Aside from the fact that it’s a huge part of who we are… most of what people/parents with autistic children who have extreme difficulties are looking at: Is Not Autism. Epilepsy, GI issues, Depression, Anxiety… they are not the same as autism. Yes, autistics may be more likely to have these issues than the general population, but as Andraya points out in this post, females are more likely to have depression and anxiety than the “general population”.
A very worthwhile post to read.
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.
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”.]
Most of you reading this blog probably know Ariane and her daughter Emma, if only in reference to their blog, Emma’s Hope Book. (If you don’t, click on the link. Really. Ariane is a great resource for parents who are having difficulties dealing with their autistic children, and is a great proponent of presuming competence because of her own experiences.) Recently (as in the last half year, maybe somewhat more), Emma’s been contributing directly to the posts on the blog. One of the most recent posts was about the body-mind disconnect that Emma experiences; her brain knows what she wants to communicate or do, and her mouth (and/or body) will do something completely different.
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.
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.
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.
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!