Support Request: Canadian Autism Partnership

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
  • Employment
  • 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:

  1. Learn more about the CAP project please visit: http://www.capproject.ca/index.php/en/about-capproject/project-objectives
  2. Make your voice heard by signing up to Global Citizen https://www.globalcitizen.org/en/content/mp-standing-ovation-moving-speech-autism/
  3. 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.

Thank you,
🙂 tagÂûght

#CAPP Films: #AutisticAdvocates Speak

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.

Click here to see the video links and read more about the subject.

ASNL: Ask About Autism #1

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.)

Click to read the plans and watch a video!

#ActuallyAutistic #Canadian #CAPP Written Submission

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.

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

#AutismAcceptance Day

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.

Recommendation: Ten Things Every Child With Autism Wishes You Knew

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”.)

Click for my specific thoughts

Doctor’s Appointments

I went to the doctor’s (general practitioner/GP) to get some referrals this afternoon, and while I was there, I was texting with a friend I made during the CAPP meeting. One of the things we discussed was doctor’s appointments, and something my dad came up with to ensure that he dealt with everything he needed to when he went to the doctor. It’s worked for me too, since he told me about it, and based on our discussion, I thought I’d share it here. It’s simple, but sometimes it’s the simple things one never thinks about.

For an explanation, read on….

BBC Video Article: Cat Helps 6 Year Old Autistic

Link

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!

How a cat enabled an autistic six-year-old to communicate

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.

Portrait of a 6-year-old artist with autism and her therapy cat

Thanks to Autism Canada for that link!

🙂 tagÂûght

Let’s Talk About: Storybooks – Face-blindness vs. Bullies

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.

Continue reading

Nova Scotia, How I Love Thee

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.

Read on….

Leaving, on a Jet Plane

(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.

For more about my plans, continue reading

Let’s Talk About: Storybooks! Post #1

So, here’s the thing. When I was at Social Club this afternoon, our facilitator mentioned that she’d been looking in the ASNL Library for resources – storybooks – to help some parents explain certain things to their children. Unfortunately, she wasn’t too happy with what she found – some she liked the wording but not the illustrations, some she liked the illustrations but not the wording, and some were “yuck”.

Because we’re a pretty creative group, she came up with the idea that maybe we could go ahead and write (and illustrate) some of these missing resources. We all loved the idea. So, one of the first things we have to do is research – and I’m turning to you. Autistic adults – what (of the subjects listed below) would you have wanted to read to help you as a kid? Autistic teens, what about you? Parents, can you ask your kids? Do you have any suggestions for wording? Are there any other subjects you think would be helpful? And if we’re satisfied with what we produce… would you like us to publish them?

Read on for details!

Recommendation: Hamilton FeminAuts’ Resources

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.

http://hamiltonfeminauts.weebly.com/about-us.html

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.

🙂 tagÂûght

Autism Canada

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]

‘Later, all!

🙂 tagÂûght

[tagÂûght] Acceptance, Love, and Self-care: #AutismPositivity2015

It’s early morning April 30th as I’m starting to write this post, which is highly ironic, as I should be sleeping right now. Unfortunately, houses in St. John’s don’t seem to have soundproofing, and the housemate whose bedroom is next to mine is talking on the phone.

But aside from that, this topic is more than just a positive one, it’s a pertinent one for me this year. (And likely to be a long post, with many examples.)

Read on for the actual positivity!

Open Letter to ASNL: About LIUB

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.

Continue to read letter

StimTastic: First Look

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.)

Read on!

Let’s Talk About: Scripting

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. :))

Click for more rambling….

Thinking, Overthinking, and Brooding

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.

Click to read on.

Let’s Talk About: Modes of Thought – Followup

This post is a followup to Let’s Talk About: Imagination and Modes of Thought. Partially because while I wasn’t entirely wrong about my “mode of thought”, I wasn’t exactly correct about it either; and partially because there’s a new Tumblr blog out there called “Autistic Thinking” that I recently stumbled across. The aim of the Autistic Thinking blog is to: “[describe] the different and possibly unusual patterns of thought and perception experienced by autistic people of all types. It’s meant to show how diverse we actually are, compared to the simplified ideas other people have of us”, to quote the blog description. And reading it, I got inspired to write this post, because of my recent ruminations about how exactly I do think.

Want to read my thoughts on this? Go on! 🙂

NL Voluntary Autism Registry

According to the Autism Society of Newfoundland and Labrador website and VOCM (the community radio station), the ASNL and the Royal Newfoundland Constabulary are going to be cooperating on creating a voluntary autism registry. Why?

World Autism Day 2014

So… it’s April 2nd. World Autism Awareness Day. Everyone’s posting about it. Everyone has their own opinions on the differences between “Awareness” and “Acceptance”, and what that means for those of us on the spectrum and our allies.

Read details of what today means for me

Info: Disability Tax Credit Talk

For any fellow Newfoundlanders, there is a talk on the Disability Tax Credit on Saturday, March 8, 2014, at 10:30 hrs., at the Holiday Inn on Portugal Cove Rd. This applies to all disabilities, including autism, depression, physical and other mental and social disabilities. It should be useful, because there’s also the fact that if you qualify for the Disability Tax Credit, you are automatically qualified for the Registered Disability Savings Plan – which can be a huge help.

See the poster below!

Disability Tax Credit Poster

😉 tagAught

Recommendation: Relaxation / Time Out Bottles

My sister (the one with the three kids ;)) mentioned in a chat with Mom today that she’d made these neat “time out bottles” to deal with arguments between her two oldest, and she’s also making one for the autistic son of a friend of hers. She showed them to us over the chat, and they look like they’d work very well for dealing with overstimulation and needing to relax, so when she told me how to find them, I grabbed the website and checked it out.

I think I’m going to make some for me. *nods firmly*

http://mycrazyblessedlife.com/2011/10/03/relax-bottletime-out-timer/

Check it out!

😉 tagAught

ASNL: Connections Panel

Well, the Autism Society of Newfoundland and Labrador had their Adult Autism Group panel tonight. Unlike what I originally thought it was going to be, it wasn’t each of us (3) making a presentation on a topic; it was five of us having a discussion panel with three questions – one about the stresses of passing for normal, one about the school system, and one about creativity / imagination – as topics, and then open question time for the audience.

It went very well, I think. (So do my parents.) It was surprisingly enjoyable, and we talked about a number of things, including sensory issues, social issues, energy drain (spoons), teachers, special ed, writing, movies, music, visual art, Asperger’s and the DSM-5, disclosure, questions about what we feel when someone goes, “Oh, now I understand” after an explanation of autism, and so on.

I also had – for exhibits of my creativity – the memorial poems for my grandmothers, the 50th birthday poem for my father, two novels-in-progress (It Came From the Library being one of them), and my Earth: Final Conflict series Dreams, Memories and Truths.

I also got to meet one of the better-known autism advocates here in NL (he was the one who asked the question about disclosure), and that was a pleasure.

Had a great time!

🙂 tagAught

Recommendations: DSM-5 ASD Criteria Analysis

Update Jun. 15/17: Updated all links to Unstrange Mind’s new website.

And we’re back again with Unstrange Mind, who is doing all of us the favour of going through the DSM-5 Autism Spectrum Disorder diagnostic criteria, and analysing it in terms of what it means both for those who are already diagnosed (even though we’re grandfathered in), and those who will be looking for a diagnosis. (Note: Frankly, based on her analysis and just what the criteria says, I fit even better in the ASD diagnosis than I did in Asperger’s! I may have said that before, but it bears repeating.)

Her analysis is not yet finished, but (as mentioned in the top note), I will continue to update as it progresses. However, I thought it was important enough that I want to start getting it out now.

Here we go:

More to follow as they are posted. This is a highly recommended set of posts, and I encourage everyone who has any interest in ASD and what the criteria is to read them.

Behaviour is Communication; Violence is Behaviour

There have been a lot of discussions around my blog “circle” about Kelli and Issy, and what violence from autistics actually means, and what are some ways to deal with it (both from the autistic and the parent point-of-view). In fact, as I believe I mentioned in yesterday’s post, there are some specific posts on other blogs about the subject I want to recommend. I also want to talk about my own experience (minor) with violence in myself, as requested by Ariane in her post in Emma’s Hope Book on Tuesday (see below, it’s one of the ones I’m recommending you read).

Continue on to see more of what I’m talking about with the title.

Let’s Talk About: Hyper-Focus vs Lack of Focus

Okay. First of all, this was not originally the next post I was going to write. I have an unfinished post about driving as stimming (which I’ve been meaning to finish and post for about three to four months now – mea culpa), and there are some other issues that I want to explore as well. But I went out for coffee with my local friend tonight, and we got to talking about some of the things we experience. One of them was the element of focus, and it ended up being (pun not intended) the focus of our conversation. And I thought it might be interesting to open up the dialogue to others as well.

I have two different “focus” modes: What I call hyper-focus, or concentrating so hard on one thing that everything else (including calls to come and eat dinner) gets blocked out; and lack of focus, where I’m lost and can’t decide what needs doing or what has priority. And a lot of things I’ve read about other autistics say the same thing. Especially if it involves one of our special interests (definitely hyper-focus), or if it’s something we’re not at all interested in (lack of focus).

The lack of focus element definitely seems to be linked to problems with executive function, and it’s quite possible that the hyper-focus is as well.

Read on to find out what I think and how I deal!

Let’s Talk About: Bullying

This next post was originally going to be my long-delayed one about Stims. But this morning, Dad and I went out to brunch (Mom’s down in Halifax with my sister’s family, helping out with the new baby, for several weeks), and on our way back, the CBC Radio Sunday Edition had a section on bullying. Specifically, about how one should respond to bullying, and whether at times violence in response is warranted. It made me think. A lot. And I thought it was definitely worth a “Let’s Talk About” post.

For more on my thoughts:

Services = IQ ≤ 70

*sighs*

My Mom is still working on making connections with Eastern Health, trying to get services for me so that I can live independently. I’m working (somewhat – I seriously need help with motivation, depression has me in its grasp) on getting Income Support and Employment Insurance. I’ve filled out the forms and stuff, now it’s mostly waiting.

But for Mom… she keeps running into the same old problem. “If she has an IQ of higher than 70, we can’t help her.”

Click for further venting and expressions of dissatisfaction