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This blog is mostly devoted to my life as an adult diagnosed (as an adult – it was only March 2012 I received my official diagnosis) with Asperger’s Syndrome / Autism Spectrum Disorder (ASD), and what it’s like to live in an allistic / neurotypical (aka “normal”, aka “NT”) world. (Note: “Allistic” is from the same roots as “autistic”, only where “aute” means “self”, “alli” means “others”. So allistic = non-autistic, because there are other people out there who are neuro-atypical, but not autistic.)

See the link at the top of the page saying Posts Index? That’s to a list of my posts in chronological order (along with a note as to when they were last updated), so you don’t have to scroll down the page to find the last post you read. Check it out! The Links Page is fairly obvious, I believe. And click on Handy Tips to find the posts I believe have potentially useful information for all!

[Added: April 20/15] I have recently changed my usename on this blog from “tagAught” to “tagÂûght” to reflect the use of symbols chosen by the Autistic Community (as opposed to for autistics – AKA the puzzle piece). Namely, a number of autistics now use the chemical symbol for gold (Au) with accents (Âû) to represent Autistics/Autism. See Unstrange Mind’s April 2015 post “G is for Giraffe” for details.[/end addition #2]

😉 tagÂûght

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!

Toronto #CAPP Meeting

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.

Read on for more of what’s going on!

#AutisticArt Wanted: Pacific Autism Family Centre #Art4PAFC

All right, my fellow Canadian creative autistics, it’s time to get your artistry flowing!

The Pacific Autism Family Centre located in Richmond, BC are looking to celebrate the diversity and creativity of those with ASD by proudly displaying their artwork in their new building, the Goodlife Fitness Family Autism Hub.

Submissions are open to artists of all ages and abilities and the subject matter and medium are entirely up to the artist. To submit your art, you will need to complete the attached form, include an image of the artwork and email to:  jenna@pacificautismfamily.com.

The submission deadline is August 31, 2016.

— From Autism Canada

PAFC Art Submission Form

[Edit re clarification] One of the main reasons for the “restriction” to Canadians is the (I quote the email) “cross border taxes and shipping costs”, which would be the responsibility of any American/International artists. It’s also a foreign donations issue. So it’s easier all around if it’s only Canadians who participate.

[2nd Edit] However, I have also just been told that if I know of an exceptional artist from outside Canada, they are willing to consider them as well. So take that and the caution regarding the responsibility of paying for shipping and customs, and if you feel you’re good, go ahead! 🙂

🙂 tagÂûght

Experience Invalidation: Telepathy and ToM

*shocked gasp* I never knew there were telepaths living among us!

How many times have you heard someone say a variation of, “Oh, c’mon, it’s not that” [or “It’s not at all”] “loud/bright/smelly/painful/bad-tasting/etc!”?

This is a classic case of experience invalidation: Someone saying that because they don’t experience stimuli and perceive the world the same way you do, your way does not actually exist in reality.

So, what does telepathy have to do with it?

#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

Canadian Autism Partnership Project Survey

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.

Thank you,

🙂 tagÂûght

Autism is a Delay, Not a Stop

So, the ASNL this semester (spring) has arranged for a yoga for autistics… practice? workshop? whatever…. Four weeks, Sunday mornings. There are a total of five of us there, and like in Social Club, I’m the oldest (although with yoga, our instructor is older than I am). And during this morning’s session (our third), I noticed something interesting.

One of the others there, who is less than half my age… is a lot like I was when I was her age. A lot like I was, at least in social elements (well, from what I’ve been able to tell during the three hours I’ve spent with her so far). Things get blurted out when she thinks of them, no matter how “inappropriate” it may be at the time. She shares details with near strangers that you might think more appropriate to just share with friends. (I mentioned those two items to Mom, and she was nodding and going, “Oh, yes, I remember you being like that”….)

And there is no better way that I can think of to know that I have changed, than to realize that there’s someone else who is like I was, and am not (at least partly) anymore. (I have more restraint about blurting things out, and a bit more restraint about sharing things… although not as much of the latter, witness the very existence of this blog!)

It’s also proof, in living colour, of the “Autism is a Delay, Not a Stop” matter. I’ve changed. I have more awareness now of social appropriateness. I have more impulse control. But I used to be just like her.

We grow, and learn, and change. We just do it at a different rate than allistics/neurotypicals.

Please, parents, specialists, everyone… remember that. Simply being autistic does not mean that we will always behave/act/react the same way as we do now.

‘Later,

🙂 tagÂûght

Let’s Talk About: Modes of Thought: “Blind” Mind

Way back when, I wrote two posts on imagination and modes of thought. Well, my Dad tends to read the BBC, and when he sees an interesting article on there, he tends to share it with the family. Early this morning he found one that has a very definite link to what I was talking about in those two posts. It’s about the fact that there are some people who are unable to visualize anything; it’s called “aphantasia”.

This man had no idea his mind is ‘blind’ until last week

Read on for my thoughts

Signal Boosting: Vaccines Don’t Cause Autism, But That’s Not the Point

I just read this post on Caffeinated Autistic‘s blog, about an article in The Scientific Parent called “Vaccines Don’t Cause Autism, But That’s Not the Point“. It was a very moving post, and led me to read the article. Like Caffeinated Autistic, I’m going to quote some of the article here, because I really do think that this deserves to be signal boosted.

Read on for details, and my comments

Response: DoaM’s “Inspiration Porn Goes to the Prom”

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.

First things first – please go and read Inspiration Porn goes to the Prom on A Diary of a Mom. Go ahead, I’ll wait.

There’s a very important question that Jess asks in there. (Thanks, Jess.)

“What if you are that person?”

Continue to read the response.

#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.

Deep Pressure Needed!

So, it’s around midnight here, and for the last half hour I’ve had both my weighted lap pillow and my laptop on my lap. My legs feel like they’re going to jump out of my skin – not sure what the best comparison is, maybe like little jolts of electricity running down the nerves in my legs, only constant rather than intermittent? – because I desperately need deep pressure.

(I’m debating showing up at my parents’ house tomorrow with my lap pillow and grabbing Mew – who is the biggest and heaviest of the cats we have between us – and forcing him to stay on my lap for more than twenty minutes at a time.)

Read on for more about deep pressure with respect to me, and a bit in general

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

Handy Tips Menu

Aside

So I got to thinking about my post on doctor’s appointments (in part because I have two today I have to leave for in about 15 minutes!), and thought to myself, Yeah, that’s a handy tip to know.

Then I thought about the post I did about suggestions for dealing with faceblindness when confronted with bullying.

And I figured that it might be worth it to gather any of these handy tips I came up with or found out and posted about into one group, to make for easy reference. So, I introduce to you: the Handy Tips menu! Click on this (it’s up in the menu bar next to the Links Page), and it will take you to those posts I have designated as Handy Tips.

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 – Faceblindness 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.

Read on for suggestions given.

I’ll Be Back Again

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.

‘Later, all!

🙂 tagÂûght

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….

Two Wonderful Sisters

I’m the oldest of four siblings (the only autistic thereof, as it happens). Two sisters – and a brother (who has given me a sister-in-law and my two younger nieces) but this post isn’t about him. (Sorry, Bruder mein!) This is about my sisters, and how wonderful they are.

But first… one issue that I’ve faced through most of my adult life, though it’s not one I talk about to many people, is that except in very rare cases – for me, Out Of Sight does indeed mean Out Of Mind. This has even included my siblings… partly because of my childhood experiences with the communications chasm that can occur between autistics and allistics, and partly because, well, I’m often not the best communicator unless it’s about something of immediate importance to me. (Not to say that my family and friends aren’t important, but if they’re not right at the forefront of my mind, I can go weeks without thinking to contact them.)

Read On for why my sisters are wonderful people and sisters….

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!

Guest Post: My Sister

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.

Click to read the post

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

Thank You Reader!

Aside

I would just like to thank whomever it was who posted a link to my post on Autism, Depression, and the Difference to Facebook. Over the last two days (so far), that post has received a whopping 605 views, most of which were referred from Facebook.

So. Thank you so much for that. The more we get these things out there, the better it is for everyone. You definitely have my appreciation.

Thank you again

🙂 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

Autism, Depression, and the Difference

I was just (less than an hour ago, as I write this) reading the most recent post Unstrange Mind put up on her blog, entitled I have a depressing, socially-isolating disease. In it she explains about how celiac and Non-24 (see her post for details) affect her in ways that are depressing, socially isolating, and very much not good for her overall health; in contrast to autism, which is not something isolated from her “self” and has a number of things about it which make her happy.

That post got me thinking, and it reminded me of a question that I think I remember my father asking me at one point, about the effects of autism vs. the effects of depression, and why I considered them to be different (the context being about how “curing” autism would make me a completely different person). I think I now have an answer.

To read my thoughts, go on.

Update on tag’s Haven

Aside

So, it’s been a while since I’ve posted anything, and as a result, I just published a huge post giving a general update on life, the universe, and everything (or at least my life over the last month and a bit!) on tag’s Haven.

The post is titled Update: Apt, Exercise, Camp NaNo July 2015, and also has stuff about my puddy tat there as well. Feel free to wander over if you want to know what I’ve been up to lately! (Though please note that there are a lot of photos, and it’s – as I mentioned above – a fairly long post. The photos are just thumbnails in the post itself, however, so that shouldn’t be a problem.)

‘Later!

🙂 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!

#NepalEarthquake Donations – Canadians

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