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.)
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”!)
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.
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.
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.
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 autismin 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.
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“
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.)
This October, the Autism Society of Newfoundland and Labrador is celebrating Autism Awareness and Acceptance Month with the theme of “Ask About Autism”. The (genius) brainchild of the Advocacy and Communications Manager, Tess Hemeon, Ask About Autism involves activities all month long encouraging people to ask questions to professionals and autistics about autism. Something I can thoroughly get behind, because how can we teach people what they want to know if they don’t ask? (Yes, we can tell people things; but those may not be the things they feel they need to know.)
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.
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 firstname.lastname@example.org.
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.
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.
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.
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.
My middle sister put up a post on Facebook last night about her visit (with her children) this summer, and my reactions. I asked her (a few minutes ago as I’m writing this) if I could post it here, and she said “Sure!” I thought it might be nice to pass on how she has seen some things. 🙂 Included are the pictures she used to show this.
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.
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.
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]
Not something I would normally post on my blog, but it’s a relevant topic at the moment, and I just found out something that can make it a bit easier for us Canadians who can’t afford to donate cash but may have an Airmiles card to help.
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.
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.
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!
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.)
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.
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.
So, at about 3am this morning when I was trying to go back to sleep (after being woken by the plow backing up in the lot behind our house – why doesn’t St. John’s believe in soundproofing houses?!), I remembered where I meant to take yesterday’s post on brooding. Scripting!
(Note that in this case, I’m really talking about a specific subdivision of scripting: putting together something in your own words, rather than either copying someone else’s – still a valid form of communication – or repeating a set of words and actions over and over, to either deal with something or because it’s a comfortable routine, for whatever reason, or any other reason that one might do that. There are bound to be other reasons out there. :))
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.
So, I was taking a look at my stats (yay, people are interested in my analysis of the problems with the SD article!), and I noticed a referring link from www.lunalindsey.com. I went, okay, I haven’t seen this before… so I clicked on the link.
The post is titled: Splines Theory: A Spoons Metaphor for Autism. In it, Ms. Lindsey looks at the spoons metaphor for dealing with energy resources with invisible disabilities, and some issues she has with it, and provides a new metaphor for exploring what’s going on that causes us to have energy drains and difficulty changing routines and such. (And a commenter adds another metaphor, for those who aren’t a comfortable with computer-oriented ones.)
It’s a rather interesting look at things, and resonates with me. Quite a bit. It makes sense – even more sense than the spoons metaphor (which is incorporated into the Splines Theory as a whole). I like it.
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.
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?
[Added Note: I have also changed the title of my post category and tag of “ASD” to “Autism Spectrum”.]