Category Archives: Sensory Related
So, it’s been a while since my last update. Not as long as some intervals, but definitely a while. In that while, a lot of things have happened.
My middle sister got married (yay!). (It was lovely, small ceremony.) I was diagnosed with psoriatic arthritis (answers, at last, to the pain and inflammation!). I joined the Newfoundland and Labrador Centre of Applied Health Research Autism Research Exchange Group (as well as two other Research Exchange Groups). I applied for and became a member of the Newfoundland and Labrador Autism Action Council (which will be working on the provincial Autism Action Plan – let’s hope it has better final results than CAPP did!).
Today’s post is about a presentation that I’m doing on Thursday to the Autism Research Exchange Group, on sensory issues.
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
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.
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!
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.)
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.
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!
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.
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.)
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”.)
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.
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.)
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.
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.
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.
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.
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.)
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.
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. 😉
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.
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?
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?
Published under: Acceptance, Autism, Autism Spectrum, Awareness, Behaviour, Communication, Community, Difficulties, Govt Info, Independent Living, Life In General, Sensory Issues, Sensory Related, Supports
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.
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.
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.
Published under: Acceptance, Aspergers, Autism, Autism Spectrum, AutismUpside, Behaviour, Communication, Difficulties, Emotions, Independent Living, Let's Talk About, Passions, Sensory Related, Supports
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