Category Archives: Advocacy

#CASDASummit2018: Day 2 (Pt 2) – #UnspokenPriceOfAutisticAdvocacy

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!)

Read on, please.

#CASDASummit2018: Day 2 (Pt 1)

Day 2 of the CASDA Summit (Thursday April 19) started out on an interesting note. And by “started out”, I mean 1 am.

I spent the first two hours of the 19th working on the script for my portion of the “First Voice Perspective” panel – finishing writing it out, and then reading it out loud and making edits. (I spent from 1am to 2am doing the latter.) Then I managed to crash – for a while.

The Summit Day 2 session itself also started out on an interesting note.

Read on, read on!

#CASDASummit2018: Day 1 and Self-Care

First day of the CASDA Summit of 2018 (Wednesday April 18). Woke up earlier than I meant to, which was irritating. Read an article from the Ottawa Citizen written by Senator Jim Munson, and got upset about some of the terminology used. (He saw my tweet, and apologized both on Twitter and in person, I definitely have to respect that.)

Got to the summit place (same place as last year, the Shaw Centre, which is attached to the Rideau Centre, which is kitty-corner from the hotel), grabbed breakfast and chatted to various people, including the other ASNL staff and board member there, and then settled up front at the “autistics'” table. 🙂 (AKA the table that most of us sat at, including all of us who were on the “First Voice Perspective” panel.)

Just a warning note before I get into the day’s panels: I was only able to note down certain comments (as opposed to the whole speech of each panelist – thinking of recording certain panels next year for my own info), so I went for the ones that struck me as particularly important in what each of them were saying.

Read on for more details of the morning (I skipped out on the afternoon) and what I did the rest of the day

#CASDASummit2018: Pre-Day Details

So, I’m doing the autistic advocate panel at the CASDA Leadership Summit in Ottawa this year. (I was part of it last year, as CAPP’s last gasp, but it seems I only wrote stuff down about it on Twitter rather than this blog. But they liked us so much last year that they requested a panel by autistic adults this year too!)

I got into it a bit late, because I hadn’t even realized about the sponsorships available, but in time to join the panel. There are three others who were part of CAPP with me, and there were two other autistic advocates whom I’d heard of but not met. Unfortunately, the friend of one died recently, so he’s had to skip the conference to deal with that. (*my sympathies to him*)

So, long story short, I got in. I’m sharing a room with Patricia (like we did for the Exploring the Spectrum conference in Halifax last year), so that’s all good. (Saving what money we can!)

Read on for Today’s Tale

Recommendation: BBC – Autistic Women

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.

BBC: “It all made sense when we found out we were autistic”

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.

‘Later!
🙂 tagÂûght

Let’s Talk About: #Neurodivergent ≠ Saint

Bit of a rant here, just warning you….

Disclaimer

Additional Disclaimer: I am not naming names; this may have been prompted by one incident, but I have no desire to start a flame war.

So, a friend recently sent me a link to a post by someone else that was written in response to a comment they’d left on a previous post. A calm, rational comment, that did disagree with some (though definitely not all) of the author’s viewpoint, but explained why they disagreed. The subsequent post (the one I was directed to) did a not-very-good job of “paraphrasing” certain elements of the comment (i.e. they were not direct quotes, they were the author putting their own spin on what was said), and seemed to feel that my friend was NT because they disagreed with the author.

Continue for more details and my reactions.

Let’s Talk About: Alyx, The “Robotic Emotion Teacher”

So, I’ve mentioned Neurodivergent Rebel’s Twitter sessions of #AskingAutistics before, in my post about grief and coping with it. On Saturday (the 13th), she posted about an article on Quartz Media, regarding a robot that the creators say can teach adult autistics to read emotion and facial expression nuances. According to the article, researchers at Heriot-Watt University in Scotland created Alyx. It’s generated a fair amount of irritation among autistics on Twitter, for various reasons.

I’m going to quote from the article, and then give some of my counter-points (some of which I’ve already mentioned on Twitter, but are expanded here). Because honestly, this is not going to work the way the article claims it will. Here’s why (aside from the fact that already a number of autistics are vehemently opposed to it).

Read on, my dearies, read on….

#BoycottToSiri: Here’s Why #ActuallyAutistic Reviews

Disclaimer

As I mentioned in yesterday’s post, I’ve got some links for you of excellent reviews by other autistic adults (pretty sure all of the ones I’ve got are by autistics, but there might be a couple of allistic responses in there as well) about the reasons why we need to boycott “To Siri With Love” by Judith Newman.

But first, I want to express just how disappointed I am – and why – at Ms. Newman’s recent claim that To Siri was not meant for an autistic audience. I know I mentioned this yesterday in my list of grievances about it, but I want to reiterate today as a separate thing.

Any books about autism, no matter who they are written by, have an effect on autistics – in a lot of cases, because they affect the way autistics are treated by the readers of the book and, in a number of cases, by society at large. We may not be the ones targetted as readers, but because of the effect those books have, our opinions, needs, and desires about them need to be taken into account.

No author of a book about autism – or anyone else discussing that book – has the right to say that it has nothing to do with autistics. No one. By definition, a book about autism involves us.

You want to read a book written by an allistic parent about their autistic child? May I recommend Iris Grace by Arabella Carter-Johnson? (Also see my post BBC Video Article: Cat Helps 6 Year Old Autistic.) The author doesn’t try to hide the challenges that can come from raising an autistic child, but neither does she shy away from the joys that can come from the same. And she is respectful of both her daughter and the autistic community, which is always good to see in a book about autism.

Now, on to the links. (Please note that they’re not in any particular order, save how they’re saved in my Evernote.)

To the links and my descriptions….

#BoycottToSiri: #ActuallyAutistic Writer Review of “To Siri With Love”

Disclaimer Trigger Warning: Mentions of eugenics, privacy invasion, emotional abuse, and other potentially triggering elements.

So, I’m not on Twitter very often. I follow a fair number of people for various reasons (writing and autism being the two main ones, but not the only ones), but that’s still a lot of reading that has to be done every day, so I tend to only go on occasionally, and mostly read my notifications.

As a result, I wasn’t on when the #BoycottToSiri movement first started. (I’d never even heard of the book – “To Siri, With Love” by Judith Newman – before.) The first I heard of it was a post by a friend of mine referencing the honestly disgraceful characterization of YouTube autistic advocate Amythest Schaber in the book.

(Hint: “Manic Pixie Dream Girl” is a very negative term, used to refer to female characters who are only in things to appeal to the straight male audience. But even “gamine” would not have been an acceptable term to use. Amythest’s work has absolutely nothing to do with their appearance, and like I said above, it is disgraceful that not only did the author describe them that way, but also that the publisher (Harper Collins, BTW – I encourage everyone to express just how insulting and disgraceful this book is to them) allowed it.)

Anyway. Long story (very long story) short, I was poking around to get some information to send to people about this today, and ran into the Storify of a chapter-by-chapter review of To Siri by autistic adult and parent (and writer) @KaelanRhy. I checked with her, and she gave me permission to post that Storify here.

Continue to read for link and description