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 currently sitting at my gate in Halifax Robert Stanfield International Airport. It’s been a really, really good trip; great and Âû-some all at once.
Remember I mentioned that friend of my sister’s who has an autistic son? We went over to their place for dinner, before I was dropped off at the airport. And I got so many wonderful hugs – everyone was staring! He was hugely affectionate to me. It was great! (I’m told that usually he’s either willing to engage or goes and shuts himself in his room – something that I always used to do, or want to do – and that he was even more engaged with me than my sister has ever seen him. It was au-some!)
It’s really been a wonderful trip. I got to see my niece and nephews, got to spend time with them, with them and my sister, and with my sister alone. But I’m happy to be heading back home as well. I miss my puddy tat, and my parents. (Yes, Mom and Dad, you’re up there in what I miss. It’s not all the cats. 😉 )
Meeting everyone, spending time with people, and the work we’re doing with CAPP – this trip is definitely going in my favourite memories.
About an hour before the flight’s due to leave. Next post will be from St. John’s, as usual.
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.
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?
My middle sister put up a post on Facebook last night about her visit (with her children) this summer, and my reactions. I asked her (a few minutes ago as I’m writing this) if I could post it here, and she said “Sure!” I thought it might be nice to pass on how she has seen some things. 🙂 Included are the pictures she used to show this.
So, I’ve been poking around the Autism Canada forums, and one of the members there has a link to a group called Hamilton feminauts. To quote from the About Us portion of their website:
FeminAuts was founded as a safe, inclusive, and accessible meeting space for women and female identified individuals on the Autism spectrum to meet likeminded individuals and learn valuable skills such as self esteem building, sensory self regulation, and adaptive and social skills.
I went there to poke around as well, and I would say that their resource page definitely warrants a recommendation! So: Resources – Hamilton feminauts. They’ve got a bunch of useful free phone apps, for both executive dysfunction and communication; links to various resource sites (including the ASAN welcome packet and the Geneva Centre); online diagnostics and test resources; inventories and social stories (including ones related to sexuality); and usual open source therapies and courses links.
Yep, high on the recommended resources list!
Note that I’ve also included a link in my links page.
I would just like to thank whomever it was who posted a link to my post on Autism, Depression, and the Difference to Facebook. Over the last two days (so far), that post has received a whopping 605 views, most of which were referred from Facebook.
So. Thank you so much for that. The more we get these things out there, the better it is for everyone. You definitely have my appreciation.
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.
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.)
Not something I would normally post on my blog, but it’s a relevant topic at the moment, and I just found out something that can make it a bit easier for us Canadians who can’t afford to donate cash but may have an Airmiles card to help.
Or at least, either calm down or render it so I can’t feel you again….
Gah. For the last several days (almost a week) I’ve been able to feel my heart beating pretty much anytime I’m not focused on something specific/concentrating. Especially when I’m trying to get to sleep at night.
It’s not that (as far as I know) my heartbeat is currently abnormal. I think it’s a sensory issue having to do with interoception. (Check out Musings of an Aspie’s post defining interoception and detailing some of the things it involves.) But the basic definition is that interoception is the perception of things that are internal to your body – temperature, organ and muscle feelings, hunger, thirst, need to use the toilet, etc.
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.
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.
What do giraffes have to do with autism, you ask? It’s all about symbols and symbolism. The majority of the Autistic community do not care for the puzzle piece symbolism, for fairly clear reasons – there’s nothing about us that’s missing, for one thing – and it was a symbol created by allistics, not autistics. We need our own symbols.
And that’s what Unstrange Mind’s post for today is about – what are the autistic-created symbols for autism? Read, and find out!
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.
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”.
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. :))
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.
I know, it’s been a while. Sorry, guys. I’ve been… a bit preoccupied with stuff, I’m afraid. Life, the Universe, and Everything. But… two things have happened today. First of all, I’m doing NaNoWriMo again this year (of course), and I’ve ended up way ahead of the curve on my word count. 🙂 Check out the details on my Other Blog, at the NaNoWriMo14 tag!
The second thing was that my stats for this site spiked hugely! As in, I’ve got over 1,200 views today!
It seems someone posted a link to one of my posts on Facebook, and I got a ton of visitors. So, whoever you are, thank you very much for that! The more people visit this blog, the more they will hopefully understand and accept about autism, autistics, and people in general. 🙂
Anyway, just wanted to let people know that I’m not dead, that if you want to know what I’m doing this month just pop over to my Other Blog, and to publically thank whoever posted the link on Facebook.
I will likely have a few recommendation posts later this month, because there have been a series of posts on a couple of blogs that I want to bring attention to. But other than that, it’s November, meaning that most of my concentration is given over to NaNoWriMo. *wry smile*
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.
Vathara told me about an article on Science Daily on Friday that claimed that they’ve found a definite genetic link to autism that doesn’t involve Fragile-X (which is more linked to intellectual delay/disability than autism directly). According to the Science Daily article, and the abstract of the article it’s taken from, it involves a mutation in the CHD8 gene that results in GI tract issues, insomnia, macrocephaly (large heads and wide-set eyes), and being on the autism spectrum. Okay.