As mentioned in my post of the Exploring the Spectrum Conference, on Thursday (March 2nd) afternoon, Patricia and Steve Silberman did an interview with CBC Radio’s Mainstreet NS show. It’s now up as a podcast on CBC at http://www.cbc.ca/player/play/892970051734. And trust me, it’s definitely worth taking 15 minutes to listen to it; Patricia and Steve both manage to cover a lot in that time with the interviewer.
So, way back in December, my friend from CAPP, Patricia, told me that Autism Nova Scotia was having a conference March 2nd and 3rd, and she had managed to get Steve Silberman (the author of Neurotribes) as the keynote speaker (he was great, BTW). She also said that they were doing a panel of women autistics, and asked if I would like my name mentioned as a possible panelist. I said “Yes!”. 😉 (Who wouldn’t? Especially given I’m getting more into advocacy.)
Over the next two months various details got ironed out, and I was confirmed as a panelist, and very eager to go.
And I had a really great time.
(Note: Long – it covers a lot over the course of the two days! Also note there are pictures included.)
So, I didn’t actually post anything about the CAPP meeting in Montreal at the end of October, mostly because it was a quick two days and I got unpleasantly flustered over issues with getting to the airport for my flight home. (I made it, but it wasn’t fun.)
One thing we did in Montreal during out meeting, however, is now public – each of us who were present were filmed doing a quick interview by Spectrum Productions, in order to create a short film about CAPP that could go public.
As of today, those films – the short film put together of all of us, and the individual interviews – are live, and available to the public.
The short film Hear From the Experts contains a selection of the interviews that each of us gave; the individual interviews contain more details and answers. Below is the short film and my interview.
It’s been a while, I know. Between dealing with the effects of my heat allergy in July and August (yeah, summers in St. John’s are a lot cooler than, say, summers in Toronto, but that doesn’t mean that they don’t get warm), and then catching a nasty cold in the first week of September (I’m still coughing), I haven’t had a lot of energy to spare to be updating.
But the CAPP Advisory Group met in Toronto on Monday, and we had a great time. We were informed of the basic stats of the responses to the Community Round Tables, the surveys, and the written submissions – and I just want to say a large “Thank You!” to all those who responded. The numbers exceeded what our mandate called for, which is wonderful, and provides even more support for the need for a Canadian Autism Partnership.
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, I’ve been in Nova Scotia for over a week now. I leave in just over 49 hours (from the time I posted this). And I had a wonderful day yesterday. I figured it was time to discuss.
This will be a somewhat long post, talking a bit about my family and a lot about the main/original reason I’m here, which is to do with the Canadian Autism Partnership Project. No details of our discussions – those are confidential – but just how it went, and how the group related to each other, and various bits and pieces.
So, it’s been a while since I’ve posted anything, and as a result, I just published a huge post giving a general update on life, the universe, and everything (or at least my life over the last month and a bit!) on tag’s Haven.
The post is titled Update: Apt, Exercise, Camp NaNo July 2015, and also has stuff about my puddy tat there as well. Feel free to wander over if you want to know what I’ve been up to lately! (Though please note that there are a lot of photos, and it’s – as I mentioned above – a fairly long post. The photos are just thumbnails in the post itself, however, so that shouldn’t be a problem.)
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.)
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.
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!
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.
Okay, didn’t expect to be doing a post on this, but it turns out that one of the main characters in my Camp NaNoWriMo novel (It Came From the Library, in case anyone forgot ;)) is autistic. In some ways, she’s a combo of one of my best friends and myself.
(In other ways not, but she’s sort of a homage to my best friend. Shh! Don’t tell her! *pauses* Whoops, she reads this. Oh well, she deserves it. She’s been my friend through thick and thin for over 10 years now, and the support she’s provided me has been truly invaluable. Even if we’ve never met in person, she deserves the appellation of “best friend”.)
The thing is, I want the character to be partially non-verbal. When she gets stressed, she can lose her words. But I don’t have this issue (not unless I’m so seriously stressed that I’m on the edge of a meltdown and about to go over, or I’m being forced to make a decision), so I don’t have as much information about it as I’d like. I have read a number of blog entries that mention it (Ballastexistenz, for one, and Unstrange Mind’s, to provide two examples of bloggers who have brought it up), but I’d like more info, if anyone’s willing to provide it. (Note: This is not a demand. I’m just hoping that some of you who have non-verbal periods would be willing to share info and thoughts with me. Questions are below, as well as details about the character.)
The Autism Women’s Network is running a Twitter campaign for the month of April focusing on the upsides of autism. Because I think this is important, I’ve created a Storify of it, and am embedding it in this post. I will be updating it throughout the month, so pop by to check it out later on as well! And if you’re on twitter, please think about adding your own Autism Upsides to the campaign using the hashtag #autismupside.
Ordinarily, I would post this on my other blog, reserving this one for ASD-related stuff. But my writing is so much a part of who I am, and tied in a lot with the ASD, so I decided what the heck, I might as well. Besides, this falls under achievements, I think!
So, here’s a status report on my April project: It Came From the Library, for Camp NaNoWriMo in April 2013.
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!
Meant to post this back in January, but time and stress got away from me. Finished it over lunch, so here it is!
All right, I’m not going to go into a huge list of dead people that everyone now thinks had Asperger’s / ASD because of what we know of their personality and history. That’s not the kind of thing I’m interested in discussing in my blog. Instead, this post is about my own creative undertakings, with a few mentions of things my ASD friends have done as well.
Meant to do a different post originally, but this is what came up, for reasons you’ll read.
Yesterday, Dad and I were going to sort through some of the stuff in my room to try to get the area in front of my closet clear. (Well, he said that he’d pick the stuff up and my responsibility was to sort it into “Keep” and “Trash”.) However, my nerves were still jangled from what happened Wednesday afternoon (more later) so I asked him if we could do it today instead. He agreed. And onward to the cleaning process….
Warning: Very long post!
Once again, I seem to be writing something other than I meant to because of a response I started writing to one of The Third Glance‘s posts. This one is on my own ASD behaviours as a child and teen – what I know of them, at least. I have vague memories of my childhood, somewhat better ones of my adolescence, but most of what I remember is generic things that repeated, and specific events that stood out in my memory for some reason or another (some good, some bad). I may easily miss some – I’m still learning what is “normal” for ASD and what might have been something else, but these are the ones that my mother and I remember (or I experienced). Not in any particular order, except that of how they occurred to me while writing. Read on for the details
Okay, this is my first post on this blog, although I’ve been using LiveJournal for a while now. But rather than the general stuff and fiction of my LJ blog (now at tag’s Haven), this is going to concentrate on my life; the difficulties and achievements I have in this life.
I was inspired by two blogs on WordPress to get this done, and a third confirmed that I was doing the right thing. Flappiness and The Third Glance were the ones that inspired me, and Aspects of Aspergers essentially told me I was doing the right thing, just by reading through their blogs.
So, a bit about me.
Currently I work as an intern with the Independent Living Resource Centre, which is a cross-disability organization that aims to help people with disabilities live fulfilling, independent lives.
Independent Living is as follows:
Independent Living is about having choices, making decisions, taking risks, and taking responsibility. Independent Living is about having control over one’s own life.
“Independent Living is not measured by the quality of tasks we can perform without support, but by the quality of life we can have with support.”
–from the ILRC Website
The other things you need to know about me is that I write SF and Fantasy, both fanfiction and original, and I hope to get published sometime within the next ten years at most; and that I love cats, especially the one who happens to be my avatar, Imber.
[edit Jan. 08/13]
Before you finish reading this post, I’d like to make a note about my life, and I want everyone who reads this blog to take it seriously, please. My parents made some mistakes with me as I was growing up. But every parent does that. And mine didn’t have the advantage that many parents have today of knowing that I was autistic (let’s not get into issues of denial and problems accessing services, okay?). I had an advanced vocabulary from the time I could talk, which was at an about average time, and never showed any indications of problems before I entered kindergarten. Back then, that was too late to be considered an ASD. They didn’t even find and acknowledge Hans Asperger’s papers on AS until three years before I graduated high school, and it wasn’t an official diagnosis until the year I graduated. So my parents did the best they could with what info they had. And they went to bat for me with school officials, which wasn’t easy. And now I’m living with them, while we’re all trying to deal with the fact that I have definite, measurable issues with independent living, as proved by the 9 years I spent on my own, and I haven’t been able to get an OT – see my next post, coming soon – and the local Autism Society is being no help at all.
So. My parents are in a very frustrating situation, and are still doing the very best they can to help me. If I make any comments about things that they’ve done, or not done, throughout my life… it is not their fault. They didn’t have the resources we have today, nor did they have the resources we are developing here and now, on my blog and others, with adult autistics being able to tell people what it was like for them growing up. Please take that into consideration before you make any comments on my parents’ behaviour that might be mentioned in here.
Thanks for reading. See you all later!