Recommendation: Autism Awareness by Andraya

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.

🙂 tagAught

Toning It Down Taupe for WAAD

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.

And why is it not blue?

ASNL Library Fundraiser

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.

More details of it here….

Let’s Talk About: Scripting

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. :))

Click for more rambling….

Thinking, Overthinking, and Brooding

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.

Click to read on.

A Genetic Link to Autism Found? Sceptical.

Okay, I’m playing the sceptic very strongly here.

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.

Why am I sceptical? Read on.

Recommendation: Interrupting and Correcting

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:

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.

🙂 tagAught

(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.)

Revamped Links: Neurodiversity Paradigm

Aside

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?

🙂 tagAught

[Added Note: I have also changed the title of my post category and tag of “ASD” to “Autism Spectrum”.]

Recommendation: What Is Autism? by Nick Walker

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?

Or, alternatively, you can also find the details of his part of the post (though not Mom2Rebels’ additional comments) at his own blog, Neurocosmopolitanism, at What Is Autism?

🙂 tagAught

For Emma: Words and Voices

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.

Poetry, yay!

MedicAlert Canada Includes Autism

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.

MedicAlert Symbol

MedicAlert Symbol – Special Edition Bracelet

Read more of the details about MedicAlert® Canada

Push, Push, Push… Until We Push Back

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….)

Read about yesterday, and then the dream….

Camp NaNoWriMo: April 9th, 2014

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?!”*

Going on….

NL Voluntary Autism Registry

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?

World Autism Day 2014

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.

Read details of what today means for me

Motor Coordination and Autism

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.

Why is this interesting for me?

Info: Disability Tax Credit Talk

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!

Disability Tax Credit Poster

😉 tagAught

Communication #1: Introduction-What is it?

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?)

Okay, a lot of thoughts and such follow. Read on!

ASNL: Connections Panel

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!

🙂 tagAught

Recommendations: DSM-5 ASD Criteria Analysis

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:

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.

New Book by Unstrange Mind

Aside

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!

Giveaway Details for Unstrange Mind's book

Unstrange Mind’s Giveaway – “No You Don’t” – Oct. 04/13.

😉 tagAught

Stimming Survey

Aside

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.

Stimming Survey

The original stimming survey post….

The stimlist needs your help….

Stimming Survey results

😉 tagAught

ASNL Celebrates Autism Awareness Month 2013

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.

Thanks!

😉 tagAught

Behaviour is Communication; Violence is Behaviour

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).

Continue on to see more of what I’m talking about with the title.

Let’s Talk About: Hyper-Focus vs Lack of Focus

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.

Read on to find out what I think and how I deal!

#SensoryIssues: Interoception & Psychosomatism

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.

Continue reading

#SensoryIssues: Pain

[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>])

Continue on to read more re Pain Issues

#SensoryIssues: Taste vs Texture – Food Dislikes

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!

Read on for details

Let’s Talk About: Bullying

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.

For more on my thoughts:

Autism Upsides: June 2013

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.

Have a look!