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.
Okay, the post I’m recommending is not actually called “Interrupting and Correcting”; it’s a series of 3 posts about the AS (read that as Asperger’s Syndrome or Autism Spectrum) need to be Right. But… reading through it? My first thought was, Mom, this is why I have such a hard time controlling my urge to step in with a correction when I know you’ve made a mistake.
Because as my mother would (correctly) tell you – that’s a major problem I still have. I can get by in social situations, for the most part. I learned early on that politeness and “shyness” are a good combo – and I do seem to give off the general vibe of “asexual” when meeting new people. (Or, at least, if people do flirt with me, I don’t notice, and don’t respond – I tend to draw in on myself when meeting new people as well….) But say something that I know is incorrect… and I have to almost bite down on my tongue (literally) to keep myself from making a correction. And still, about half the time, I don’t manage to stop it.
Now, I didn’t get the same type of bullying that the author of this post got – I was more inclined to be bullied because I was smart, and because I was a very tall, clumsy girl, in elementary school, and in high school, I was with people as smart as I was, so there wasn’t that kind of “that person has the answers” dynamic going on. But… being smart got me the respect of the teachers. And therefore their approval. And that mattered, because one thing I was shown in elementary school is that there are good adults out there who will do their best to protect you from bullies. And adults are more likely to believe you when you don’t feel well or can’t do something if they respect you. (Not always, but enough so that my analytical side could come to that conclusion.)
So, from Snakedancing’s blog, I give you:
- #Aspergers & Interaction: Being Right Pt. 1
- #Aspergers & Interaction: Being Right Pt. 2
- #Aspergers & Interaction: Being Right Pt. 3
Please note that the topic above is really the main topic of only the first post. The other two go into strategies to help deal with the need to be right.
(P.S. My planned post following up on Modes of Thought will be out – either tomorrow or later today, depending on whether you subscribe to the “day changes over at midnight” theory or the “day changes over after you fall asleep” theory. If the latter, it will be out tomorrow – this is what I say; if the former, it will be out later today – which is what the website says.)
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?
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, I had this interesting dream last night, one that I thought brought up some issues important enough to discuss. So, despite the lack of statement in the title, this is actually a “Let’s Talk About It” post. As usual, I will welcome any commentary.
To explain the dream, we’ll have to go back to yesterday (plus a bit of back story), because I think something that happened then was what triggered it. (Note: Seriously rambling post because of it, but there are a few other points in there aside from the main one, so….)
NaNoWriMo (and over the last couple of years, Camp NaNoWriMo) is a big thing for me. But this year, things got off to a slowish start, mostly because my conscious awareness of the whole “Camp NaNoWriMo’s First Session = April” was entirely absent until this morning.
*shrugs* Happens sometimes.
So, there I am, forgetting completely about it, and reading blogs about Autism Awareness Month and all that… and what should pop into my inbox but a note about Saturday’s Marathon Writing Session.
*tagAught blinks at email, and goes, “Huh. It’s Camp NaNo already?” pauses “Gah! April’s already one week gone! Write! Need to write! What to write?!”*
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.
Okay, this wasn’t originally planned for the next post. In fact, this wasn’t originally planned to be a post at all. But my dad listens to CBC classics, and something that was said on the program early this afternoon caught my attention. Combined with the whole idea of AAC, not just speech, as valid means of communication, I started thinking about this post.
Stories are a very ancient means of communication. They have been used for the three great ‘E’s – to explain, to educate, and to entertain.
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?)
First of all, Happy New Year 2014! (For those that use the Gregorian Calendar, of course…. 😉 )
As the title of this post says, I know I’ve not been very active posting as of late; if you’re curious as to why, I’ve posted the details on my Other Blog.
One thing I do want to do, however (just before I do my best to assure you that I haven’t abandoned this blog!) is invite those who are interested to check out the blog’s 2013 stats. Some interesting things there!
And now, I do promise that this blog hasn’t been abandoned. (See, I said I would!) As linked above, there have been a variety of reasons I haven’t updated lately, but that shouldn’t continue. Especially after I move (see the post referenced above for details).
My sister (the one with the three kids ;)) mentioned in a chat with Mom today that she’d made these neat “time out bottles” to deal with arguments between her two oldest, and she’s also making one for the autistic son of a friend of hers. She showed them to us over the chat, and they look like they’d work very well for dealing with overstimulation and needing to relax, so when she told me how to find them, I grabbed the website and checked it out.
I think I’m going to make some for me. *nods firmly*
Check it out!
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).
A lot has been happening in the autistic world lately, most of which I’ve found out from other blogs on my links page (check them out, those who are new here!). There’s what happened to Issy – I think that Ariane (from Emma’s Hope Book) and especially Love Explosions (from Love Explosions), and their commenters, have said things more eloquently than I can manage. Please, take a look at their blogs, and at what they’ve written about the situation; it’s really, really important. There are certain of their posts that I’m going to recommend specifically a bit later on, but… just read, please.
But that isn’t the main point of this post – just something I think is really important for everyone involved in the autism world – whether autistic, autism parent, or autism friend – to read through and think seriously about.
The main point of this post is what’s been happening with me lately, and what happened yesterday, and what it made me think about.
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.
It’s currently in the mid- to high-twenties (Celsius; mid-seventies to mid-eighties Fahrenheit) here in St. John’s, and I’m… miserable. Thoroughly enervated (which does not mean what it appears to in Harry Potter; it actually means drained of energy), and occasionally sick from the heat. I’m just lucky that my bedroom and “study” are down in the “sub”-basement of the house. (Well, not just lucky; my parents are well aware of the problems that I have with heat, so it was deliberately arranged this way.) But because Mom has trouble tolerating air-conditioning, there’s none in the house. Twenty minutes or so ago, Dad informed us that the kitchen was currently 4°C hotter than it was outside.
The problem? I’m allergic to heat, and I seem to also have problems with thermoregulation, which taking the Effexor last fall made worse.
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!
Happy Canada Day, Everyone!
Hope all my fellow Canadians have a good day!
This next post was originally going to be my long-delayed one about Stims. But this morning, Dad and I went out to brunch (Mom’s down in Halifax with my sister’s family, helping out with the new baby, for several weeks), and on our way back, the CBC Radio Sunday Edition had a section on bullying. Specifically, about how one should respond to bullying, and whether at times violence in response is warranted. It made me think. A lot. And I thought it was definitely worth a “Let’s Talk About” post.