#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! 🙂

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!

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

Let’s Talk About: Storybooks! Post #1

So, here’s the thing. When I was at Social Club this afternoon, our facilitator mentioned that she’d been looking in the ASNL Library for resources – storybooks – to help some parents explain certain things to their children. Unfortunately, she wasn’t too happy with what she found – some she liked the wording but not the illustrations, some she liked the illustrations but not the wording, and some were “yuck”.

Because we’re a pretty creative group, she came up with the idea that maybe we could go ahead and write (and illustrate) some of these missing resources. We all loved the idea. So, one of the first things we have to do is research – and I’m turning to you. Autistic adults – what (of the subjects listed below) would you have wanted to read to help you as a kid? Autistic teens, what about you? Parents, can you ask your kids? Do you have any suggestions for wording? Are there any other subjects you think would be helpful? And if we’re satisfied with what we produce… would you like us to publish them?

Read on for details!

#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!

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

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

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

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

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

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.

#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: 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

Sensory Overload Fun (Not!)

So, had my weekly work placement at the Career Work Centre (NL Advanced Education and Skills Job Seekers’ Centre) today. And I spent the entire day feeling like my nerves were being dipped in an acid bath. Or, to put it another way, as though each sound above a certain threshold rubbed sandpaper roughly across my nerves. (Particularly in my upper arms – they seem to be the ones reacting most.)

Continue reading