Category Archives: Supports
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).
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.
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 email@example.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.
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.
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.
(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.
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?
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]
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.)
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.
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!
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.”