Tag Archives: Mimbolovecommunity
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! 🙂
It looks like I’m going to be doing a series of rambles about emotion. This one, as per the title, is about feeling left out. I was thinking about other stuff yesterday, and a few memories came up that put me in mind of this particular emotion.
It’s a difficult feeling to quantify and to express, the sense of feeling left out of something. Particularly when you already have trouble with social cues and body language, and so can’t necessarily recognize that whatever you’re feeling left out of has nothing to do with you.
It’s also a very alienating and isolating emotion. Even thinking about talking about it makes me want to cry or melt down. Not exactly a pleasant topic, I’m afraid.
But it’s an important one. Particularly when the people around you don’t mean for you to get the impression that you’re being left out of things.
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!
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. Read on, please.
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.
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.
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.)
It’s been a while, I know. Between dealing with the effects of my heat allergy in July and August (yeah, summers in St. John’s are a lot cooler than, say, summers in Toronto, but that doesn’t mean that they don’t get warm), and then catching a nasty cold in the first week of September (I’m still coughing), I haven’t had a lot of energy to spare to be updating.
But the CAPP Advisory Group met in Toronto on Monday, and we had a great time. We were informed of the basic stats of the responses to the Community Round Tables, the surveys, and the written submissions – and I just want to say a large “Thank You!” to all those who responded. The numbers exceeded what our mandate called for, which is wonderful, and provides even more support for the need for a Canadian Autism Partnership.
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 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.
Visit the Canadian Autism Partnership Project to take the survey. It will close July 15th, so the sooner you can visit, the better.
I apologize – this was meant to be out yesterday (Friday) but it was a busy day, and I got distracted with other things. So it’s out today.
There’s a very important question that Jess asks in there. (Thanks, Jess.)
“What if you are that person?”
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.
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.
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.
For those of you in Canada who have Airmiles, you can chose as a Dream Reward for 190 airmiles to donate $20 to the Canadian Red Cross Relief Fund for the Nepal Earthquake.
There are also four other charities you can donate to (with links) – WWF Canada, Kids Help Phone (this is 175 airmiles), Trees Ontario, and Motionball in support of the Special Olympics Canada Foundation, but given that the Nepal Earthquake is a sudden, recent event, I thought I should probably advertise this. It means that even if we can’t donate money or food, we can still help.
A copy of this post is going up on tag’s Haven.
*hopefully yours* tagÂûght
So, I finally have (and am putting up) the results of the ASNL fundraising promotion at Chapters on April 1st.
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.
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!
🙂 tagAught Âû
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.