So, as mentioned in the last post, this post is focused entirely on our panel – First Voice Perspective – The Unspoken Price of Advocacy. Note that the panel was recorded, and I’ll be putting up a link to that recording when it goes live.
The panel consisted of myself, Corey Walker (from BC), Patricia George-Zwicker (from NS), Jackie McMillan (from ON) – all of whom were on the CAPP Advisory Group with me – and Daniel Share-Strom (from ON). There was supposed to be one more, Bruno Hache (from ON), but unfortunately one of his best friends committed suicide on the Monday, so he couldn’t make it.
But before I get to the contents of our panel, I want to share a picture with you – a picture that was taken of pretty much all the attendees of the summit. (It’s not loading into this post, so here!)
Day 2 of the CASDA Summit (Thursday April 19) started out on an interesting note. And by “started out”, I mean 1 am.
I spent the first two hours of the 19th working on the script for my portion of the “First Voice Perspective” panel – finishing writing it out, and then reading it out loud and making edits. (I spent from 1am to 2am doing the latter.) Then I managed to crash – for a while.
The Summit Day 2 session itself also started out on an interesting note.
First day of the CASDA Summit of 2018 (Wednesday April 18). Woke up earlier than I meant to, which was irritating. Read an article from the Ottawa Citizen written by Senator Jim Munson, and got upset about some of the terminology used. (He saw my tweet, and apologized both on Twitter and in person, I definitely have to respect that.)
Got to the summit place (same place as last year, the Shaw Centre, which is attached to the Rideau Centre, which is kitty-corner from the hotel), grabbed breakfast and chatted to various people, including the other ASNL staff and board member there, and then settled up front at the “autistics'” table. 🙂 (AKA the table that most of us sat at, including all of us who were on the “First Voice Perspective” panel.)
Just a warning note before I get into the day’s panels: I was only able to note down certain comments (as opposed to the whole speech of each panelist – thinking of recording certain panels next year for my own info), so I went for the ones that struck me as particularly important in what each of them were saying.
I’ve mentioned before that my dad reads the BBC (BBC Video Article: Cat Helps 6 Year Old Autistic) and he sends me interesting articles. This was one that he sent to me today.
This is an excellent article, I can’t praise it enough. It’s about seven women (the first interviewed plus the six that are pictured at the top), all of whom received late diagnoses as autistic, and what that meant for them. And all of their stories resonated with me in some way or another. (One read about being autistic thanks to her mother’s work, and recognized herself in that – that was me except with my sister’s studies, for example.)
The article is focused on the fact that autism is very underdiagnosed in females – at least one of the women has a son who was diagnosed at four and a daughter who wasn’t diagnosed until she was thirteen, for example – and how these women found out they were autistic, and what it meant to them to be diagnosed. In a lot of ways (except for the fact that the article is basically all the women’s stories, with no additions or questions listed, except the numbers at the beginning of the article regarding autistics in the UK), it’s a mirror of the interview I gave the CBC last June.
I highly, highly recommend reading this article. The stories in it are wonderful and moving, and very, very true to my own experience, and so likely will be for a number of other autistic women.
Disclaimer: As far as I’m aware, I had no issues with toilet training.
So, a few weeks ago, I saw a comment somewhere (I no longer remember where, but it may have been Twitter) that essentially claimed that the only reason autistics might have trouble with toileting issues is low intelligence (note I didn’t say “IQ”). This is my response.
As we know now, most – if not all – autistics have trouble with sensory issues; sensory issues that when unaccompanied by other elements are diagnosable (in North America) as Sensory Perception Disorder, or SPD. Those difficulties can be summed up in three parts: hypersensitivity (overly sensitive to stimuli); hyposensitivity (very not sensitive to stimuli); and sensory seeking (seeking out certain sensory stimuli). Note that sometimes hyposensitivity and sensory seeking end up focused on the same form of stimulus, and one seeks out that form of sensory stimulus because one is hyposensitive to it.
As we also know, there are more senses than just the commonly known five (sight, hearing, taste, touch, and smell); there’s: Click to continue reading
It looks like I’m going to be doing a series of rambles about emotion. This one, as per the title, is about feeling left out. I was thinking about other stuff yesterday, and a few memories came up that put me in mind of this particular emotion.
It’s a difficult feeling to quantify and to express, the sense of feeling left out of something. Particularly when you already have trouble with social cues and body language, and so can’t necessarily recognize that whatever you’re feeling left out of has nothing to do with you.
It’s also a very alienating and isolating emotion. Even thinking about talking about it makes me want to cry or melt down. Not exactly a pleasant topic, I’m afraid.
But it’s an important one. Particularly when the people around you don’t mean for you to get the impression that you’re being left out of things.
There’s a series on Twitter about how (we) autistics feel negative emotions right now, prompted by one of Neurodivergent Rebel’s Twitter #AskingAutistics polls. (Which I highly recommend, by the way.) And since there are things going on in my life right now that make this a fairly relevant topic for me, I decided to write a post on it. Or more specifically, write a current post on grief. I’ll probably write about others later, but this is the one relevant right now.
I’ve mentioned alexithymia – the inability to recognize/categorize one’s own emotions, and sometimes to have physical reactions to emotions instead of “feeling” them – before, both when speaking of imagination, and about psychosomatic issues. And there’s also the issue that autistics tend to emote in ways that are not recognized/understood by the neurotypical audience. All of this means that quite often, the neurotypical audience has no idea what we feel, or how deeply/intensely.
One thing I do know about grief, from previous experience, is that I process it very differently from most of my family. (I’m not sure about my dad – we haven’t really discussed that.) Of course, no one processes emotions in exactly identical fashion, whether from the neurotypical or the neurodiverse population… but my way is rather different from most others that I’ve heard of.
On Wednesday I posted about anxiety/panic attacks, and what happened to me on Monday. As one might guess, it’s been a topic of conversation among my family since then.
And what keeps coming up (understandably enough, especially considering that no one said anything or reacted to me on Monday) is the question: What can be done to help? What helps while the attack is happening, and what helps after it’s over?
Have you ever felt like your nerves were exposed wires – live ones? Jittery, exposed to air, live wires? That might at any time make your muscles do strange things, like seize up? That feel as though there’s static electricity – or any kind of electricity, really, but static electricity gives the idea I’m going for in terms of strength – going along them?
I have. In fact, the reason this post is going up now is that’s how I’ve been feeling almost since I woke up this morning. Even after taking my Vitamin B complex (vitamin B is good for your neural network).
The first time I can remember feeling this way was in the fall/winter of 2012/3, when I was doing an internship with ILRC-NL (now Empower). One of my placements was at a hotel, and the first time I tried to work at the reception desk (as opposed to the “operator room”), there was a vacuum cleaner being used off to my left. My left upper arm immediately started feeling that way – as though the nerves were exposed to air and had electricity stronger than the normal neural communication shooting through it. Sensory Overload Warning!
It seems (for me) to happen when I’m stretched thin, or when I’m stressed and anticipating something that may not be terribly pleasant, or if there’s major unpleasant sensory input (like the vacuum cleaner mentioned above). (Today I suspect it falls under the “stretched thin” category – see my last post.) It’s usually strongest in my upper arms – and if it’s on one side only, usually that’s the left side, or the side that the sensory input that is unpleasant is situated. Both sides, or more than just my upper arm, and it’s most likely to be one of the first two situations.
So I was wondering. Does anyone else get this sensation? Is it something that happens occasionally, frequently, or all the time? Does anyone have suggestions for dealing with it other than “wait it out”? (Or “take a nap and see if that calms it down enough”?)
Would love to hear from others!