So, this past week I was in Ottawa, at the Canadian Autism Spectrum Disorders Alliance Leadership Summit (as those of you who follow me on Twitter probably already know!). Unlike the previous two years (though I didn’t write any blog posts for the 2017 summit), I wasn’t speaking at a panel, but I still wanted to go for the contacts and to meet new autistic advocates (there were thirty-four who expressed interest this year, as CASDA received a grant specifically to invite those with first person lived experience, and they had keynote speakers each day with lived experience).
Now, I say that up front… because this isn’t the post about the summit. (That’s coming later.) This is about something else, that got raised in a panel and in talking to one of my close friends (Patricia) the first day of the summit (which happened to be April 2nd – yes, that’s on purpose).
Every year in April, since I first started learning about Light It Up Blue and Autism Speaks, I have consciously chosen to not wear blue (unless I’m going to be at home all day). I have encouraged friends and relatives to not wear blue on April 2nd (and preferably wear red or taupe instead). And that is my personal choice.
So, in my last post I talked about mimicking, and how it’s one of the common traits of female autistics that helps mask the fact that we’re autistic. A couple of days ago, my sister (the SLP one, not the teacher) found a post on Facebook that contained a wonderful poster/infographic (see below; designed by Karen Baker, a graphic designer in the UK) about the traits of autism in females, and shared it.
So, it’s been a while since my last update. Not as long as some intervals, but definitely a while. In that while, a lot of things have happened.
My middle sister got married (yay!). (It was lovely, small ceremony.) I was diagnosed with psoriatic arthritis (answers, at last, to the pain and inflammation!). I joined the Newfoundland and Labrador Centre of Applied Health Research Autism Research Exchange Group (as well as two other Research Exchange Groups). I applied for and became a member of the Newfoundland and Labrador Autism Action Council (which will be working on the provincial Autism Action Plan – let’s hope it has better final results than CAPP did!).
Today’s post is about a presentation that I’m doing on Thursday to the Autism Research Exchange Group, on sensory issues.
So. Here is the preliminary video of the autistic advocates’ panel at the CASDA 2018 Summit. This is not the official video, which CASDA is working on getting professionally edited; this is basically the raw footage with a few edits (title and removing the final remarks of the day) by me. Once the official video goes up, I will remove mine and put a link on this post to the new one.
CONTENT WARNING: The video is just over an hour long, and as I state up front, there are some very difficult and painful things to hear (including mentions of suicide and filicide).
Comments are welcome.
So, VOCM records its shows via SoundCloud, so here’s the recording of my portion of the Morning Show today! 🙂
About 3 hours ago now I was a participant on a panel done by the Autism Society of Newfoundland and Labrador about Residential Options for those on the autism spectrum – difficulties and possible solutions. It was livestreamed across the province and is available on YouTube (the MUN School of Music channel). It was an excellent panel and a lot of issues and possibilities were discussed. (Note: Forward the time to 8:52 which is when it actually starts.)
Note that tomorrow I will be interviewed by VOCM! 🙂
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!)
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.
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.
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!)
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.
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.
Bit of a rant here, just warning you….
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.
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).
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.)
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.
So, the Annual General Meeting of the Autism Society of Newfoundland and Labrador was this morning. A few people who read this blog know that I applied to be considered for the self-advocate’s seat on the board. As you can see by the title, I got in.
The other applicant for the self-advocate seat happens to be someone who is in my Social Club, and we were both told that the board and Scott Crocker (the Executive Director of the ASNL) were so pleased that there were two of us showing definite interest, that whoever didn’t get voted in would probably still be co-opted for things. 🙂 I’m personally hoping that the other applicant applies for one of the available “At Large Representative” positions that will come open next year.
Anyway, aside from giving everyone the good news, I want to add a disclaimer to this blog. I’ve already put it in This Blog and Post Index, but I also want it here, just in case people don’t read (or re-read, in some cases) that post.
Disclaimer: The opinions expressed on this blog, unless explicitly stated, are the personal opinions of the blogger only, and do not reflect the opinions of the ASNL Board of Directors.
First of all, I apologize to Tess and Will – I meant to get this up Tuesday, but didn’t manage to.
So, Monday evening, the ASNL (in the person of Tess Hemeon) organized the second Ask About Autism Livestream evening. (The first was last year – see my post ASNL: Ask About Autism #1.) This time, rather than some professionals and an autistic, there were two of us, both autistics – Will and myself. The theme this year that the ASNL has been concentrating on for Canadian Autism Awareness/Acceptance Month is “Everybody Grows Up”, and that was what the first part of the livestream was about. The second part looks at sensory issues, stims, and executive function, on a very basic level (we did this in half an hour, so it had to be basic 😉 ).
(We’re hoping to do this more frequently, and Tess and I were even discussing the possibility of short daytime livestream discussions as everyone was closing up.)
The online web version of the interview I had with the CBC St. John’s Morning Show is now up. 🙂
They used two of the pictures I sent them: the selfie I took on Monday (which shows some of my artwork on the wall behind me), and a picture of Imber and I from the year I was diagnosed. So happy they used that pic!
So. The interview I mentioned on Thursday ran yesterday morning in two sections (the first was a teaser/intro), at 7:36 and at 7:43. I recorded it on my computer through the CBC Radio One streaming, and spent half of yesterday picking out the parts that were my interview (the recording was from 5:20 to 9:30 in the morning!), cutting them out, and putting them together to send to my friends and family.
There’s also going to be a web page version, and when I checked with them to ask when it would go up (answer is: Sometime over the next few days, they’ll try to remember to let me know, but I’ll keep checking the site anyway!), I also asked about whether I could post that recording to my blog (wasn’t sure about the legalities of it). The web guy said that there should be no problem, so here it is! The interview is about 10 minutes long or so, and I’ve included about 10 seconds of silence between the teaser and the conversation just to set them apart.
Note: Ms. Holmes accidentally calls me “Tracy” at the end of the teaser (2:11, according to my sister-in-law), but all other uses of my name are correct.
(And why is the default “not getting my name right” always Tracy? If someone’s going to get my name wrong, I’d expect them to call me “Judy”, but it’s always, always “Tracy”!)
So, here it is. Enjoy!
I haven’t been reading many other blogs for the last little while, due to various reasons including my concentration on CAPP issues, overall fatigue (ended up with low iron anemia again this past April, and that’s taking a while to clear up), and trying to focus a bit more on my writing (which has mainly meant doing a lot more reading of fic).
However, I recently (like Thursday) noticed a tweet referring to an interesting-sounding post by Unstrange Mind, and thought that I might as well check it out. So I followed the link I had on this site, and discovered that he now has his own site (rather than one hosted by wordpress.com). So I’ve been reading his posts on that blog, in chronological order (which included updating the links to the DSM-5 Autism Spectrum Criteria Analysis), and in the midst of doing that, found the title post.
Neurodiversity: Creativity and Innovation Thrive When We Welcome Diverse Minds is the text of a talk Unstrange Mind gave at University of North Carolina’s Fourth Annual Disability is Diversity Week celebration, on Wednesday, November 9th, 2016 in Asheville, North Carolina. (CONTENT WARNING: Post contains mention of suicide and attempted suicide.)
Despite the aforementioned content warning, this is a hopeful post. Unstrange Mind explains the basics of neurodiversity – including the biological factual basis – and how that can apply to support creativity and innovation. He looks at the advantages that supporting and encouraging a neurodiverse environment can provide, and names examples. he also points out that accomodations… don’t really cost all that much.
So. Highly recommended post. And at least a few more to follow.
So, last week I got an email from Tess Hemeon (the Public Relations/Communications person for the ASNL) asking if I was willing to be interviewed about being diagnosed as autistic as an adult. I said sure – I’m looking for new routes to go to help expand my advocacy. So Monday afternoon, I had an informal (aka not recorded) phone interview with an intern working at CBC Newfoundland and Labrador (here in St. John’s). One of the things I mentioned was that I wouldn’t mind doing a formal interview about the matter.
So, she contacted me Tuesday and asked if I was available to come in this morning for a recorded interview. My reaction was: “Yes!” ( 😉 )
Got up early this morning, and drove out to the CBC building for the taped interview.
The interview was with Krissy Holmes of the St. John’s Morning Show (which airs from 5:30 to 9:00 am, Newfoundland Time, on CBC Radio One), and it went really well.
So, last week I put up the post about supporting CAP on Twitter. My mother proceeded to bring up a good point – what if you’re not on Twitter (and don’t want to be)? So here are some things that you can do off Twitter to help show your support.
- They could write to their local MPs, asking for them to clarify their position on CAP.
- If they have Facebook, they could share information about CAP there (the website, videos etc.)
- Write an editorial about the need for a Canadian Autism Partnership to submit to their local newspaper. In fact, if any of you are interested in doing this, we (the CAP team) would be more than happy to help
- Email their friends and family to share information about CAP.
Thank you again, for anything and everything you do to help us get CAP underway.
To my Canadian readers – a guest post from my mother:
This is something that I feel quite strongly about and we are asking for your support. I was on the policy panel last year that came out with a paper to hand in to government and it has just sat on their desk since then. Please feel free to forward this to any and all the people that you know.
For fellow Canadians among my readers, including those who have been following my CAPP journey:
I am reaching out to ask for your help in support of the Canadian Autism Partnership (CAP) which recently was denied funding in the 2017 federal budget. Please take a few minutes to read this email, and 2 minutes to show your support.
CAP brought together top experts in the autism field who were advised by self-advocates, stakeholders and government representatives from 13 provinces and territories, to develop a business plan with a goal to address the complex issues related to autism in Canada.
CAP strives for timely, evidence based efficiencies in the following areas, which reflect the most pressing issues facing Canadians with ASD:
- Early identification and early intervention
- Interventions and services to optimize quality of life at all ages
- Specialized medical care, including access to dental and mental health services
- Education, including transitions to work, post-secondary education and independent life.
How you can show your support:
- Learn more about the CAP project please visit: http://www.capproject.ca/index.php/en/about-capproject/project-objectives
- Make your voice heard by signing up to Global Citizen https://www.globalcitizen.org/en/content/mp-standing-ovation-moving-speech-autism/
- Use this tweet to show your support of CAP through a clear and non-partisan message which will go directly to the Prime Minister and Health Minister: “.@JustinTrudeau @janephilpott Support CDNs living w/ #Autism Spectrum Disorder, pledge $19M toward the Canadian Autism Partnership. #cdnpoli“
There is now a followup post for what you can do if you don’t use/have Twitter: Support Request: CAP – Followup.
As mentioned in my post of the Exploring the Spectrum Conference, on Thursday (March 2nd) afternoon, Patricia and Steve Silberman did an interview with CBC Radio’s Mainstreet NS show. It’s now up as a podcast on CBC at http://www.cbc.ca/player/play/892970051734. And trust me, it’s definitely worth taking 15 minutes to listen to it; Patricia and Steve both manage to cover a lot in that time with the interviewer.
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.)
Check this out! Excellent reasons for hiring autistics, and the CEO in question even comments that having autistics/neuro-diverse teams helps everyone in the team do better!
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.