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.
I recently re-read a post by Musings of an Aspie: Is there a Link Between ASD Motor Skill Deficits and Social Communication Difficulties? which she posted a year ago. She started out intending to look at ASD and dyspraxia – which is a developmental disorder that seems to involve problems with motor coordination… and sensory issues, and executive order functions. In fact, apparently autism and dyspraxia have so much of an overlap that people can be frequently misdiagnosed with one when they really have the other, or they tend to often end up as co-morbid (co-occuring) diagnoses.
For any fellow Newfoundlanders, there is a talk on the Disability Tax Credit on Saturday, March 8, 2014, at 10:30 hrs., at the Holiday Inn on Portugal Cove Rd. This applies to all disabilities, including autism, depression, physical and other mental and social disabilities. It should be useful, because there’s also the fact that if you qualify for the Disability Tax Credit, you are automatically qualified for the Registered Disability Savings Plan – which can be a huge help.
See the poster below!
A question that involves a lot of different areas of study. Behaviourists; biologists – both human-focused and zoologists; anthropologists; linguists; even archaeologists and paleontologists. And it’s something very important to the Autistic community, and to the broader autism community (incorporating allistic parents, allies, etc.), because of the difficulties with speech that come with “classical” (aka Kanner’s) autism, and the difficulties all autistics have, to one extent or another, understanding body language and social behaviour.
This question just happened to occur to me as I was driving back from my new residence to my parents’ house (where I now live only on the weekends, so that Imber and I aren’t separated for long – I need my puddy-tat!), having forgotten some stuff that I meant to bring over yesterday evening. (Heck, there’s still some stuff I forgot, but it wasn’t as important as what I did fetch, so I wasn’t going back.) And the question won’t leave me alone, so I thought I’d better start writing.
(And as I started writing this post out – not that I’m finishing it tonight – I realized that it really needs to be a series of posts. So, this is #1 – just what is communication, anyway?)
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!
Update Jun. 15/17: Updated all links to Unstrange Mind’s new website.
And we’re back again with Unstrange Mind, who is doing all of us the favour of going through the DSM-5 Autism Spectrum Disorder diagnostic criteria, and analysing it in terms of what it means both for those who are already diagnosed (even though we’re grandfathered in), and those who will be looking for a diagnosis. (Note: Frankly, based on her analysis and just what the criteria says, I fit even better in the ASD diagnosis than I did in Asperger’s! I may have said that before, but it bears repeating.)
Her analysis is not yet finished, but (as mentioned in the top note), I will continue to update as it progresses. However, I thought it was important enough that I want to start getting it out now.
Here we go:
- Autism and the DSM-5: Losing Your Diagnosis?: An explanation of the coming posts, and the fact that you don’t lose your diagnosis with the new criteria.
- Autism and the DSM-5: Diagnostic Criteria (Section A): Section A covers deficits in social communication and interaction.
- Autism and the DSM-5: Diagnostic Criteria (Section B): Section B covers restricted and repetitive patterns of behaviour (including interests).
- Autism and the DSM-5: Diagnostic Criteria (Section C): Section C covers the timing of symptoms. U.M. considers this section huge, because it recognizes that symptoms may appear different at different stages in life.
- Autism and the DSM-5: Diagnostic Criteria (Section D): Section D looks at how much of an impairment in daily living the symptoms cause.
- Autism and the DSM-5: Diagnostic Criteria (Section E and Severity Levels): Section E looks at other possibilities for the symptoms; severity levels are ways to measure the current severity of the symptoms in sections A & B (and they are to be measured separately, and are listed as fluid, potentially changing back and forth over time). Severity levels replace the “high functioning” and “low functioning” labels, which I suspect pleases a lot of my fellow autistics. It certainly pleases U.M. She has also posted the contents of “Table 2”, which lists the criteria for the severity levels.
- DSM-5 and Autism: Development and Course (Part 1): The first paragraph in the commentary section about the development and course of autism (there are seven, each one will be covered in an individual post).
- DSM-5 and Autism: Development and Course (Part 2): The second paragraph in the commentary section, this one concentrates on “regression” – which isn’t necessarily the preferred term, but is the one used by the DSM. U.M. illustrates this issue with some personal examples.
- DSM-5 and Autism: Development and Course (Part 3): The third paragraph in the commentary section concentrates on first signs of autism; U.M. again illustrates this issue with personal examples (making it real for people).
- DSM-5 and Autism: Development and Course (Part 4): The fourth paragraph continues the early signs of autism, referencing deafness and the fact that allistic children show some of the same repetitive and restrictive behaviours as are typical of autism, but not to quite the same extent (“[t]he clinical distinction is based on the type, frequency, and intensity of the behavior”).
More to follow as they are posted. This is a highly recommended set of posts, and I encourage everyone who has any interest in ASD and what the criteria is to read them.
Unstrange Mind has a new book of essays out, called No You Don’t: Essays from an Unstrange Mind. (NYD part of title links to Amazon.com, Essays part of title links to Amazon.ca.) Her posts about it are here and here.
The neat thing is that she’s planning to potentially give away free copies this weekend, if she can get enough likes on her Facebook page. I’m not one for Facebook (I’ve sworn in the past that I won’t touch FB with a ten-foot pole), but for those who are Facebook users, if you’ve taken a look at Unstrange Mind’s blog, and / or the description of the book, and are interested, here are the details for the giveaway!
AutistiCook has a stimming survey set up; it’s now got enough responses that it can serve as a resource for people, but it can always use more. The more responses and details, the better! I encourage people to fill it out; especially as it’s not “just” for autistic stims, but for any kind of stims.
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.
There have been a lot of discussions around my blog “circle” about Kelli and Issy, and what violence from autistics actually means, and what are some ways to deal with it (both from the autistic and the parent point-of-view). In fact, as I believe I mentioned in yesterday’s post, there are some specific posts on other blogs about the subject I want to recommend. I also want to talk about my own experience (minor) with violence in myself, as requested by Ariane in her post in Emma’s Hope Book on Tuesday (see below, it’s one of the ones I’m recommending you read).
Okay. First of all, this was not originally the next post I was going to write. I have an unfinished post about driving as stimming (which I’ve been meaning to finish and post for about three to four months now – mea culpa), and there are some other issues that I want to explore as well. But I went out for coffee with my local friend tonight, and we got to talking about some of the things we experience. One of them was the element of focus, and it ended up being (pun not intended) the focus of our conversation. And I thought it might be interesting to open up the dialogue to others as well.
I have two different “focus” modes: What I call hyper-focus, or concentrating so hard on one thing that everything else (including calls to come and eat dinner) gets blocked out; and lack of focus, where I’m lost and can’t decide what needs doing or what has priority. And a lot of things I’ve read about other autistics say the same thing. Especially if it involves one of our special interests (definitely hyper-focus), or if it’s something we’re not at all interested in (lack of focus).
The lack of focus element definitely seems to be linked to problems with executive function, and it’s quite possible that the hyper-focus is as well.
Musings posted on her blog on July 3rd a post about “interoception”, which she defined as:
describes our sensitivity to sensations that originate in our bodies
Her post concentrates on the issues surrounding the muting of interoceptive signals that is quite often a “Thing” for autistics, and the problems that can result from that (such as a serious infection, in her case, which could have been caught weeks ago if she had been aware of the sensation); and on the issues of alexithymia, which often mean confusing emotional states with interoceptive information.
In my response to one of the comments on that post, I linked the concept of interoception to the concept of psychosomatic symptoms; and this post is to explore that concept further.
[Note: This post and the next one (#SensoryIssues: Interoception & Psychosomatism) are linked in theme, so they will be posted closely together. Same day, at least.]
I don’t complain a lot about pain.
I’m sure some people (*cough* my family *cough*) will disagree, but… I don’t. Not when compared to what I actually feel, at least. I tend to feel a fair bit more pain than I talk about to people, partly because I don’t know how to say things, and partly because… well, see my hypochondria posts (links are below) for the details on how I feel about that.
Oh, if I have a nasty headache, or bad cramps, or I get a sensory “spike” (like when cutlery clashes together, or a child squeals in excitement, etc.)… then I complain. Or at least mention it.
Sometimes very obviously (aka covering my ears with my hands, holding my stomach), because I’m never sure how to convey the information and words don’t seem to be enough. I’m not always listened to (especially by my siblings; my parents are a lot more understanding, particularly lately, as we learn new stuff about the sensory sensitivities of autistics), so broad, sometimes exaggerated gestures have become my main effort to get across to people that I’m hurting. (Of course, this then results in people – *cough* my brother *cough* – telling me that there’s no need to do that, it’s not like it’s an issue. [Said after I covered my ears to try to deal with my niece’s excited squealing. I wasn’t trying to make her feel bad or anything; I just could not tolerate the pitch of her voice, and no one was listening to my requests to please be a bit quieter. </rant over>])
So, I was having tomato sandwiches for lunch today (been a long time since I’ve had those, and I remembered how much I enjoy them) when it suddenly came to me that I didn’t really like tomato sandwiches on brown bread, that they tasted better with white bread. Now, this didn’t really make that much sense, because I find that I prefer the taste of brown bread to white bread; it’s more interesting.
So I was trying to puzzle this out, and after a minute or two, I realized that it wasn’t really the taste of brown bread tomato sandwiches I was objecting to; it was the texture! Revelation!
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!
“Let there be light!” (Or, in literal translation, the order, “Make light!”)
So, yes, this post is about sensory stuff. Specifically, visual sensory stuff, and living with people who aren’t as sensitive to light as I am.
Everyone needs light. We’re a diurnal species, meaning that we’re active in the daylight. There are very good reasons for that, involving the anatomical makeup of our eyes – namely, we (as a species) aren’t very good at seeing in the dark, and vision is our species’ primary sense.
More than that, we need a certain amount of sunlight to stay healthy. It helps our bodies produce Vitamin D, which helps with the absorption of calcium, and assists in preventing depression (or helping to mitigate it), to name just two benefits of sunlight.
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.
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.
I mentioned this blog post in my post on “Autism Speaks: I Want to Say”, but I think it deserves its own post recommending it.
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]
First of all, can I mention how glad I am to have found the online ASD community, someplace where I can tell people: “I can’t help it,” and be believed and understood. (Not to say my parents don’t believe me, but it’s really hard for them to understand some of this stuff, because of that Communication Chasm.)
So, this is going to be the first in a series of posts “Let’s Talk About”, which will look at some of the things I experience and invite people to join me in discussing them. And our first topic is insomnia, because it’s potentially linked to what happened to me yesterday (see Sensory Overload Fun (Not!)), and because I’ve been trying to deal with it lately.
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.