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.
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”.)
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!
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.
Thanks to Autism Canada for that link!
🙂 tagÂûght
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 currently sitting at my gate in Halifax Robert Stanfield International Airport. It’s been a really, really good trip; great and Âû-some all at once.
Remember I mentioned that friend of my sister’s who has an autistic son? We went over to their place for dinner, before I was dropped off at the airport. And I got so many wonderful hugs – everyone was staring! He was hugely affectionate to me. It was great! (I’m told that usually he’s either willing to engage or goes and shuts himself in his room – something that I always used to do, or want to do – and that he was even more engaged with me than my sister has ever seen him. It was au-some!)
It’s really been a wonderful trip. I got to see my niece and nephews, got to spend time with them, with them and my sister, and with my sister alone. But I’m happy to be heading back home as well. I miss my puddy tat, and my parents. (Yes, Mom and Dad, you’re up there in what I miss. It’s not all the cats. 😉 )
Meeting everyone, spending time with people, and the work we’re doing with CAPP – this trip is definitely going in my favourite memories.
About an hour before the flight’s due to leave. Next post will be from St. John’s, as usual.
‘Later, all!
🙂 tagÂûght
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.
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.)
Read On for why my sisters are wonderful people and sisters….
(Except I know exactly when I’ll be coming back. 😉 )
So, back in November/December, I applied to be a member of Autism Canada’s ASD Advisory Board. On my application, I filled in that I was interested both in being part of the planning for a conference specifically for autistic adults (AKA a Canadian version of Autreat), and as a stakeholder in discussions, polls, surveys, etc. The latter has gotten me involved in CASDA (Canadian Autism Spectrum Disorders Alliance) as a stakeholder for the Canadian Autism Partnership Project (CAPP), a Federal initiative whose goal is to: “address key issues such as information sharing and research, early detection, diagnosis and treatment, and supporting families” (quote from Canadian Autism Partnership: Canada’s Economic Action Plan).
The first face-to-face meeting of stakeholders is going to be in Halifax next week. (I’m rather looking forward to it.)
And even more, because my sister and my oldest niece and my nephews all live in a suburb of Halifax, so I’m going to be spending some time with them as well.