#ASNL: #AskAboutAutism 2: Everybody Grows Up

First of all, I apologize to Tess and Will – I meant to get this up Tuesday, but didn’t manage to.

So, Monday evening, the ASNL (in the person of Tess Hemeon) organized the second Ask About Autism Livestream evening. (The first was last year – see my post ASNL: Ask About Autism #1.) This time, rather than some professionals and an autistic, there were two of us, both autistics – Will and myself. The theme this year that the ASNL has been concentrating on for Canadian Autism Awareness/Acceptance Month is “Everybody Grows Up”, and that was what the first part of the livestream was about. The second part looks at sensory issues, stims, and executive function, on a very basic level (we did this in half an hour, so it had to be basic 😉 ).

(We’re hoping to do this more frequently, and Tess and I were even discussing the possibility of short daytime livestream discussions as everyone was closing up.)

To see the video, read on! 🙂

CBC Interview: Diagnosis

So, last week I got an email from Tess Hemeon (the Public Relations/Communications person for the ASNL) asking if I was willing to be interviewed about being diagnosed as autistic as an adult. I said sure – I’m looking for new routes to go to help expand my advocacy. So Monday afternoon, I had an informal (aka not recorded) phone interview with an intern working at CBC Newfoundland and Labrador (here in St. John’s). One of the things I mentioned was that I wouldn’t mind doing a formal interview about the matter.

So, she contacted me Tuesday and asked if I was available to come in this morning for a recorded interview. My reaction was: “Yes!” ( 😉 )

Got up early this morning, and drove out to the CBC building for the taped interview.

The interview was with Krissy Holmes of the St. John’s Morning Show (which airs from 5:30 to 9:00 am, Newfoundland Time, on CBC Radio One), and it went really well. Read on for details!

Music: Pressie, NSO Masterworks 4, and Concert Tips

It’s a semi-long post today. 🙂 Time to talk about music! I’ve got a heartwarming story of a present, a review of the Newfoundland Symphony Orchestra Masterworks 4 2016/17, and some handy tips for dealing with concerts for autistics and those around autistics.

Our story begins with the NSO Masterworks 4, though. Click for the story!

CBC Radio Interview: Patricia and Steve Silberman!

As mentioned in my post of the Exploring the Spectrum Conference, on Thursday (March 2nd) afternoon, Patricia and Steve Silberman did an interview with CBC Radio’s Mainstreet NS show. It’s now up as a podcast on CBC at http://www.cbc.ca/player/play/892970051734. And trust me, it’s definitely worth taking 15 minutes to listen to it; Patricia and Steve both manage to cover a lot in that time with the interviewer.

Click to listen to the embedded version of the podcast.

Deep Pressure Needed!

So, it’s around midnight here, and for the last half hour I’ve had both my weighted lap pillow and my laptop on my lap. My legs feel like they’re going to jump out of my skin – not sure what the best comparison is, maybe like little jolts of electricity running down the nerves in my legs, only constant rather than intermittent? – because I desperately need deep pressure.

(I’m debating showing up at my parents’ house tomorrow with my lap pillow and grabbing Mew – who is the biggest and heaviest of the cats we have between us – and forcing him to stay on my lap for more than twenty minutes at a time.)

Read on for more about deep pressure with respect to me, and a bit in general

Recommendation: Ten Things Every Child With Autism Wishes You Knew

Ellen Notbohm, the mother of two children, one of whom is on the spectrum, has a number of books out about children on the spectrum, acting as the voice for her son. One of them, Ten Things Every Child With Autism Wishes You Knew, is now in the ASNL Barbara Hopkins Library. As I was early to Social Club today, I noticed it and decided to read it to see whether I agreed with what was in the book.

My personal answer? It’s excellent. There are some minor things that I disagree with (noted below), but the vast majority of it (and every one of the “Ten Things”) involves points that I am in full agreement with. It’s also both well-written and quite respectful of autistics. (Including the fact that although she uses “child with autism” throughout, she both explains why she prefers not to use the term “autistic”, and also that a number of children, when they grow up, prefer to be referred to as “autistic” rather than “adult with autism”.)

Click for my specific thoughts

Let’s Talk About: Storybooks – Face-blindness vs. Bullies

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.

Continue reading

Two Wonderful Sisters

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.)

Read On for why my sisters are wonderful people and sisters….

Recommendation: Hamilton FeminAuts’ Resources

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.

http://hamiltonfeminauts.weebly.com/about-us.html

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.

🙂 tagÂûght

#SensoryIssues: Be Still, My Beating Heart

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.

Read on for details

Open Letter to ASNL: About LIUB

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.

Continue to read letter

StimTastic: First Look

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.)

Read on!

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?

Recommendation: Splines Theory by Luna Lindsey

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.

So I’m recommending this post. 😉

🙂 tagAught

Let’s Talk About: Modes of Thought – Followup

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.

Want to read my thoughts on this? Go on! 🙂

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

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?

Recommendation: Relaxation / Time Out Bottles

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*

http://mycrazyblessedlife.com/2011/10/03/relax-bottletime-out-timer/

Check it out!

😉 tagAught

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.

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

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.

Update and Sensory Breaks

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.

Read on to find out about my summer, and what it has to do with sensory breaks.

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: Heat & Thermoregulation

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.

Read on for details re how heat affects me

#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

General Update: May 29, 2013

First of all, my apologies to any friends who might have been worried about my long absence; the past month has been somewhat crazy for me.

Read all about it! Full update enclosed.