Category Archives: Autism
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!)
So, way back in December, my friend from CAPP, Patricia, told me that Autism Nova Scotia was having a conference March 2nd and 3rd, and she had managed to get Steve Silberman (the author of Neurotribes) as the keynote speaker (he was great, BTW). She also said that they were doing a panel of women autistics, and asked if I would like my name mentioned as a possible panelist. I said “Yes!”. 😉 (Who wouldn’t? Especially given I’m getting more into advocacy.)
Over the next two months various details got ironed out, and I was confirmed as a panelist, and very eager to go.
And I had a really great time.
(Note: Long – it covers a lot over the course of the two days! Also note there are pictures included.)
So, the ASNL this semester (spring) has arranged for a yoga for autistics… practice? workshop? whatever…. Four weeks, Sunday mornings. There are a total of five of us there, and like in Social Club, I’m the oldest (although with yoga, our instructor is older than I am). And during this morning’s session (our third), I noticed something interesting.
One of the others there, who is less than half my age… is a lot like I was when I was her age. A lot like I was, at least in social elements (well, from what I’ve been able to tell during the three hours I’ve spent with her so far). Things get blurted out when she thinks of them, no matter how “inappropriate” it may be at the time. She shares details with near strangers that you might think more appropriate to just share with friends. (I mentioned those two items to Mom, and she was nodding and going, “Oh, yes, I remember you being like that”….)
And there is no better way that I can think of to know that I have changed, than to realize that there’s someone else who is like I was, and am not (at least partly) anymore. (I have more restraint about blurting things out, and a bit more restraint about sharing things… although not as much of the latter, witness the very existence of this blog!)
It’s also proof, in living colour, of the “Autism is a Delay, Not a Stop” matter. I’ve changed. I have more awareness now of social appropriateness. I have more impulse control. But I used to be just like her.
We grow, and learn, and change. We just do it at a different rate than allistics/neurotypicals.
Please, parents, specialists, everyone… remember that. Simply being autistic does not mean that we will always behave/act/react the same way as we do now.
So, I’ve been in Nova Scotia for over a week now. I leave in just over 49 hours (from the time I posted this). And I had a wonderful day yesterday. I figured it was time to discuss.
This will be a somewhat long post, talking a bit about my family and a lot about the main/original reason I’m here, which is to do with the Canadian Autism Partnership Project. No details of our discussions – those are confidential – but just how it went, and how the group related to each other, and various bits and pieces.
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?
It’s early morning April 30th as I’m starting to write this post, which is highly ironic, as I should be sleeping right now. Unfortunately, houses in St. John’s don’t seem to have soundproofing, and the housemate whose bedroom is next to mine is talking on the phone.
But aside from that, this topic is more than just a positive one, it’s a pertinent one for me this year. (And likely to be a long post, with many examples.)
So, I finally have (and am putting up) the results of the ASNL fundraising promotion at Chapters on April 1st.
Together, Chapters and the Autism Society of Newfoundland and Labrador managed to raise $206.19 (Cdn) for the ASNL Library fund. Yay! And Chapters is also interested in doing more with the ASNL – Double Yay!
So, thanks to everyone who came out and contributed by buying books during that period; it helps a lot.
Heh. Remember when I said in the last post not too expect too many recommendations this month, despite the posting volume on Autistic-oriented blogs? Well… there was another wonderful post put up today that really needs signal boosting.
Unstrange Mind is doing a series this April for the Blogging from A-to-Z Challenge (check the following post for the link if you’re curious), and she’s hitting things hard, the way they need. And today’s post (well, all these posts she’s writing, but today’s happened to strike me) is about something that is a huge problem in trying to gain acceptance for autistics. The Empathy Question.
Please, read through the post E is for Empathy – it highlights a number of problems with the idea that autistics have no empathy (talk to my mother, or my best friends; they’ll dismiss that idea immediately). It even mentions a new study that brings to light some problems with the “well-known” Sally-Ann Test, a study that I hadn’t heard about before.
Not to mention the ludicrous treatise she mentions that says something about since autistics have no empathy, we have no sense of community. *cough, cough* Um, what do you think my blogroll list is?
Anyway, she also provides links to another blog post about empathy, that in turn provides links to more. Please, take a look at them, and absorb the message we’re trying to send.
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.
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.
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.
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. :))
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?
[Added Note: I have also changed the title of my post category and tag of “ASD” to “Autism Spectrum”.]
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.
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.
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.
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.
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!
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?)
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!
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.