*shocked gasp* I never knew there were telepaths living among us!
How many times have you heard someone say a variation of, “Oh, c’mon, it’s not that” [or “It’s not at all”] “loud/bright/smelly/painful/bad-tasting/etc!”?
This is a classic case of experience invalidation: Someone saying that because they don’t experience stimuli and perceive the world the same way you do, your way does not actually exist in reality.
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:
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
So, today was the St. John’s Round Table meeting for the Canadian Autism Partnership Project (see: Leaving, on a Jet Plane, Nova Scotia, How I Love Thee for starting details). It went quite well, and there was a broad spectrum of people there – social workers, SLPs, clinicians, I think there was at least one OT, ASNL board members, self advocates, parents (and a number who were more than one of those). The discussions went quite well, and just like the first ASD Avisory Group meeting, we actually managed to finish early! 🙂 (Which was a good thing, because the ASNL board had a meeting right after.)
But the important takeaway (aside from the info shared for the Working Group) is the matter of the online survey. For any Canadian involved in the autism community (whether autistic, family member, friend, researcher, specialist, doctor, clinician, member of a society, etc.), we need as many of you as possible to take the survey. The more data we have, the clearer the partnership’s objectives will be – and the more people we can tell the federal government that this will affect. The more people it will affect, the more likely the federal government is to provide the funds to actually create the partnership.
Visit the Canadian Autism Partnership Project to take the survey. It will close July 15th, so the sooner you can visit, the better.
Thank you,
🙂 tagÂûght
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
Way back when, I wrote two posts on imagination and modes of thought. Well, my Dad tends to read the BBC, and when he sees an interesting article on there, he tends to share it with the family. Early this morning he found one that has a very definite link to what I was talking about in those two posts. It’s about the fact that there are some people who are unable to visualize anything; it’s called “aphantasia”.
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.
I apologize – this was meant to be out yesterday (Friday) but it was a busy day, and I got distracted with other things. So it’s out today.
First things first – please go and read Inspiration Porn goes to the Prom on A Diary of a Mom. Go ahead, I’ll wait.
There’s a very important question that Jess asks in there. (Thanks, Jess.)
“What if you are that person?”
April 2nd. WAAD. Officially World Autism Awareness Day, though I can’t think of an autistic I know who doesn’t feel it should be World Autism Acceptance Day.
This was going to be a very short post, because today I did most of my “getting my point across” on Twitter. But then I decided to look at this a different way – what have I done over the past year to contribute to Autism Acceptance?
Because for once, I can answer that I’ve done more than maintain my blog.
Last year, I wrote a letter to the ASNL about Light It Up Blue (which the ASNL continued this year, unfortunately) – it’s also been passed out to Autism Canada’s leadership.
Since then, I have also joined both Autism Canada’s ASD Advisory Board, and the Canadian Autism Partnership Project ASD Advisory Board. I have been part of discussions about creating conferences specifically for autistics in Canada, and about building a Canadian Autism Partnership. I’ve made friends with more autistics throughout Canada by this – really good friends at that. And those have helped me gain the confidence both in myself and my views of being autistic to speak out even more.
I have also started work on the project that my Social Club group is calling Spectrum Storybooks. It’s going to be a long-term project, but will be so useful. Something like that is needed, and we’re going to help fulfill that need.
So I don’t know about the world as a whole – there’s still a lot of things wrong with the public view of autism – but I’ve done things this past year that I can be proud of. And that? That’s something worth celebrating.
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
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”.)