#CAPP Films: #AutisticAdvocates Speak

So, I didn’t actually post anything about the CAPP meeting in Montreal at the end of October, mostly because it was a quick two days and I got unpleasantly flustered over issues with getting to the airport for my flight home. (I made it, but it wasn’t fun.)

One thing we did in Montreal during out meeting, however, is now public – each of us who were present were filmed doing a quick interview by Spectrum Productions, in order to create a short film about CAPP that could go public.

As of today, those films – the short film put together of all of us, and the individual interviews – are live, and available to the public.

The short film Hear From the Experts contains a selection of the interviews that each of us gave; the individual interviews contain more details and answers. Below is the short film and my interview.

Click here to see the video links and read more about the subject.

#AutisticArt Wanted: Pacific Autism Family Centre #Art4PAFC

All right, my fellow Canadian creative autistics, it’s time to get your artistry flowing!

The Pacific Autism Family Centre located in Richmond, BC are looking to celebrate the diversity and creativity of those with ASD by proudly displaying their artwork in their new building, the Goodlife Fitness Family Autism Hub.

Submissions are open to artists of all ages and abilities and the subject matter and medium are entirely up to the artist. To submit your art, you will need to complete the attached form, include an image of the artwork and email to:  jenna@pacificautismfamily.com.

The submission deadline is August 31, 2016.

— From Autism Canada

PAFC Art Submission Form

[Edit re clarification] One of the main reasons for the “restriction” to Canadians is the (I quote the email) “cross border taxes and shipping costs”, which would be the responsibility of any American/International artists. It’s also a foreign donations issue. So it’s easier all around if it’s only Canadians who participate.

[2nd Edit] However, I have also just been told that if I know of an exceptional artist from outside Canada, they are willing to consider them as well. So take that and the caution regarding the responsibility of paying for shipping and customs, and if you feel you’re good, go ahead! 🙂

🙂 tagÂûght

#ActuallyAutistic #Canadian #CAPP Written Submission

So, I’ve already put up the link to the CAPP survey (reminder: closes July 15th); we also have a written submission form for adult autistics (referred to as “self-advocates” in the documentation). The details are as follows:


We are interested in learning about your views on the importance of a national partnership model in addressing the critical issues facing individuals with autism, their families and those working in the field. We envision CAP bringing together researchers, service providers, and decision-makers in collaboration with people with autism and their families to address the complex issues the autism community faces today.

Specifically, we are looking for your input to the following questions:

  • As a person on the spectrum, what are the big issues that you believe need to be solved?
  • As we design the CAP model, what suggestions do you have for creating a strong national partnership?
  • How do you think CAP could make a difference to you, your family and your community?
  • If you are aware of other collaborative models you think we should explore, please tell us about them.

Once you have composed your responses to these questions, please visit http://www.capproject.ca/index.php/en/written-submission-self-advocates to submit your answers in a fillable PDF.

All information is confidential. The information we collect will provide us with an understanding of the current autism landscape in Canada and what is required to have a successful national partnership model in this country.

If you have additional comments, questions, or information that you would like to share with us, please send them to casdacapproject@gmail.com.

The deadline for fillable PDF submissions is Saturday, July 30th.


Please, please, if you’re an autistic Canadian, please fill this out. We’ve got a large number of responses to the survey so far, but only approximately 4% of them are from actual autistics. The more information we get from autistics, the better our idea of what the situations around Canada are.

Thank you!

🙂 tagÂûght

Autism is a Delay, Not a Stop

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.

‘Later,

🙂 tagÂûght

Signal Boosting: Vaccines Don’t Cause Autism, But That’s Not the Point

I just read this post on Caffeinated Autistic‘s blog, about an article in The Scientific Parent called “Vaccines Don’t Cause Autism, But That’s Not the Point“. It was a very moving post, and led me to read the article. Like Caffeinated Autistic, I’m going to quote some of the article here, because I really do think that this deserves to be signal boosted.

Read on for details, and my comments

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

BBC Video Article: Cat Helps 6 Year Old Autistic

Link

My dad follows the BBC for the quality of their reporting, and sometimes finds interesting tidbits on there. This was one of them. Very positive message here. You go, Iris and Thula!

How a cat enabled an autistic six-year-old to communicate

Turns out there’s also an article on CNN about Iris and Thula, which goes into greater detail about Iris’s accomplishments as an artist.

Portrait of a 6-year-old artist with autism and her therapy cat

Thanks to Autism Canada for that link!

🙂 tagÂûght

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!

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

Autism Canada

So, the website for Autism Canada has just gone live: autismcanada.org. I’ve been poking around, and so far it looks fairly good. I have, however, felt the need to send them a copy of my letter about Light It Up Blue, since that’s one of the National Awareness campaigns they have listed. I have also joined their forum under the username tagÂûght (just waiting for official approval), so anyone else who wants to join is welcome to discuss this blog with me. 🙂

Still poking around, but note that they do have the DSM-5 criteria listed, including the severity criteria (3 levels – I’d say I’m either level 1 or 2 in communication, and level 1 in “restricted” interests, although my sensory issues might push me up to level 2 in that as well).

They also have a directory, called Autism Junction, at autismjunction.ca, which has a wide variety of service providers for autistics, both child and adult. It’s not complete, but is still under construction; there’s a form to fill out for any service providers who aren’t listed already. (I’ve sent an email to two that I know of, advising them of this.)

Going to be seeing if there’s any way that I can include blogs in the list of resources, and let them know about my blog. 🙂

[Edit] Under “About Autism”, they have a good listing of co-morbid diagnoses, and what may indicate one (I’m going to check out the PDF they include for further details). However, the “Evolution of Autism” page is not about how autism can evolve throughout a person’s life, it’s about the recognition of autism since Leo Kanner first identified it. Honestly? I think details about how it can change throughout a person’s life would be more useful. [/end edit]

‘Later, all!

🙂 tagÂûght

Autism, Depression, and the Difference

I was just (less than an hour ago, as I write this) reading the most recent post Unstrange Mind put up on her blog, entitled I have a depressing, socially-isolating disease. In it she explains about how celiac and Non-24 (see her post for details) affect her in ways that are depressing, socially isolating, and very much not good for her overall health; in contrast to autism, which is not something isolated from her “self” and has a number of things about it which make her happy.

That post got me thinking, and it reminded me of a question that I think I remember my father asking me at one point, about the effects of autism vs. the effects of depression, and why I considered them to be different (the context being about how “curing” autism would make me a completely different person). I think I now have an answer.

To read my thoughts, go on.

ASNL Chapters Fundraiser Update

Aside

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.

🙂 tagÂûght

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

Recommendation: G is for Giraffe by Unstrange Mind

And it’s another recommendation of a post from Unstrange Mind’s A-to-Z April Blogging Challenge, this one “G is for Giraffe“.

What do giraffes have to do with autism, you ask? It’s all about symbols and symbolism. The majority of the Autistic community do not care for the puzzle piece symbolism, for fairly clear reasons – there’s nothing about us that’s missing, for one thing – and it was a symbol created by allistics, not autistics. We need our own symbols.

And that’s what Unstrange Mind’s post for today is about – what are the autistic-created symbols for autism? Read, and find out!

🙂 tagAught Âû

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: E is for Empathy by Unstrange Mind

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.

Recommendation: Autism Awareness by Andraya

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.

🙂 tagAught

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?

ASNL Library Fundraiser

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.

More details of it here….

Thinking, Overthinking, and Brooding

Hi, everyone. First of all, I’m sorry I haven’t been putting stuff up lately – truth to tell, I’ve been more interested in reading other people’s posts and thinking about them than writing my own for the last few months. (As a result, there may be a flurry of recommended posts coming up soon.) But I was thinking yesterday about a situation I’m in, and decided that the results of that would likely make a good post.

Click to read on.

Revamped Links: Neurodiversity Paradigm

Aside

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?

🙂 tagAught

[Added Note: I have also changed the title of my post category and tag of “ASD” to “Autism Spectrum”.]

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?

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

Motor Coordination and Autism

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.

Why is this interesting for me?

Info: Disability Tax Credit Talk

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!

Disability Tax Credit Poster

😉 tagAught

Communication #1: Introduction-What is it?

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?)

Okay, a lot of thoughts and such follow. Read on!

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