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.

[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!

#SensoryIssues: Be Still, My Beating Heart

Or at least, either calm down or render it so I can’t feel you again….

Gah. For the last several days (almost a week) I’ve been able to feel my heart beating pretty much anytime I’m not focused on something specific/concentrating. Especially when I’m trying to get to sleep at night.

It’s not that (as far as I know) my heartbeat is currently abnormal. I think it’s a sensory issue having to do with interoception. (Check out Musings of an Aspie’s post defining interoception and detailing some of the things it involves.) But the basic definition is that interoception is the perception of things that are internal to your body – temperature, organ and muscle feelings, hunger, thirst, need to use the toilet, etc.

Read on for details

ASNL Chapters Fundraiser Update

Aside

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.

🙂 tagÂûght

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

Let’s Talk About: The Meanings of “Obsession”

So, at Social Club (at the Autism Society for NL; it’s basically a small group getting together for social activities – playing games, doing art, etc.) this past weekend, we had a new person there. And that person mentioned that xe was obsessed with one particular topic (I can no longer remember what it was, that wasn’t the important thing), “like with OCD” (obsessive-compulsive disorder).

On my post about Hyper-Focus vs. Lack of Focus, Unstrange Mind called me on using the term “special interest” for interests that we have and like to focus on – a term that I used to replace the term “obsession”, which tends to carry a negative connotation. She suggested using the term “passion”, which I thought was a very good idea, and have since cleaned up my vocabulary that way. 🙂

Anyway, getting back to the topic of the post, I was rather disturbed by the way that person was using the term “obsession” to define a particular area of interest, because at one point, my mother suggested I might be OCD, and I asked my psychologist about the matter. And what he said was something of an eye-opener.

Read on for more details….

Recommendation: G is for Giraffe by Unstrange Mind

And it’s another recommendation of a post from Unstrange Mind’s A-to-Z April Blogging Challenge, this one “G is for Giraffe“.

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

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!

Recommendation: E is for Empathy by Unstrange Mind

Heh. Remember when I said in the last post not too expect too many recommendations this month, despite the posting volume on Autistic-oriented blogs? Well… there was another wonderful post put up today that really needs signal boosting.

Unstrange Mind is doing a series this April for the Blogging from A-to-Z Challenge (check the following post for the link if you’re curious), and she’s hitting things hard, the way they need. And today’s post (well, all these posts she’s writing, but today’s happened to strike me) is about something that is a huge problem in trying to gain acceptance for autistics. The Empathy Question.

Please, read through the post E is for Empathy – it highlights a number of problems with the idea that autistics have no empathy (talk to my mother, or my best friends; they’ll dismiss that idea immediately). It even mentions a new study that brings to light some problems with the “well-known” Sally-Ann Test, a study that I hadn’t heard about before.

Not to mention the ludicrous treatise she mentions that says something about since autistics have no empathy, we have no sense of community. *cough, cough* Um, what do you think my blogroll list is?

Anyway, she also provides links to another blog post about empathy, that in turn provides links to more. Please, take a look at them, and absorb the message we’re trying to send.

Recommendation: Autism Awareness by Andraya

There are a lot of good posts going up for April that have nothing to do with Autism Speaks (at least, not directly), and I honestly wish I could recommend them all, but I’d probably overload my blog with posts if I did that. (Though don’t be surprised to see a few of them going up as rec posts over the next few months! Also, feel free to poke around my links page and check out the blogs I’ve got there, most of which I would be recommending from.)

This post on autism awareness by Andraya, of Asperger’s and Me, definitely needs to be signal boosted and pointed out to people, however. It points out something to people that helps explain part of why Autistics in general have no interest in being “cured” of our autism. Aside from the fact that it’s a huge part of who we are… most of what people/parents with autistic children who have extreme difficulties are looking at: Is Not Autism. Epilepsy, GI issues, Depression, Anxiety… they are not the same as autism. Yes, autistics may be more likely to have these issues than the general population, but as Andraya points out in this post, females are more likely to have depression and anxiety than the “general population”.

A very worthwhile post to read.

🙂 tagAught

Toning It Down Taupe for WAAD

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.

And why is it not blue?

ASNL Library Fundraiser

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.

More details of it here….

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.

Recommendation: Splines Theory by Luna Lindsey

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.

So I’m recommending this post. 😉

🙂 tagAught

A Genetic Link to Autism Found? Sceptical.

Okay, I’m playing the sceptic very strongly here.

Vathara told me about an article on Science Daily on Friday that claimed that they’ve found a definite genetic link to autism that doesn’t involve Fragile-X (which is more linked to intellectual delay/disability than autism directly). According to the Science Daily article, and the abstract of the article it’s taken from, it involves a mutation in the CHD8 gene that results in GI tract issues, insomnia, macrocephaly (large heads and wide-set eyes), and being on the autism spectrum. Okay.

Why am I sceptical? 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! 🙂

Recommendation: Interrupting and Correcting

Okay, the post I’m recommending is not actually called “Interrupting and Correcting”; it’s a series of 3 posts about the AS (read that as Asperger’s Syndrome or Autism Spectrum) need to be Right. But… reading through it? My first thought was, Mom, this is why I have such a hard time controlling my urge to step in with a correction when I know you’ve made a mistake.

Because as my mother would (correctly) tell you – that’s a major problem I still have. I can get by in social situations, for the most part. I learned early on that politeness and “shyness” are a good combo – and I do seem to give off the general vibe of “asexual” when meeting new people. (Or, at least, if people do flirt with me, I don’t notice, and don’t respond – I tend to draw in on myself when meeting new people as well….) But say something that I know is incorrect… and I have to almost bite down on my tongue (literally) to keep myself from making a correction. And still, about half the time, I don’t manage to stop it.

Now, I didn’t get the same type of bullying that the author of this post got – I was more inclined to be bullied because I was smart, and because I was a very tall, clumsy girl, in elementary school, and in high school, I was with people as smart as I was, so there wasn’t that kind of “that person has the answers” dynamic going on. But… being smart got me the respect of the teachers. And therefore their approval. And that mattered, because one thing I was shown in elementary school is that there are good adults out there who will do their best to protect you from bullies. And adults are more likely to believe you when you don’t feel well or can’t do something if they respect you. (Not always, but enough so that my analytical side could come to that conclusion.)

So, from Snakedancing’s blog, I give you:

Please note that the topic above is really the main topic of only the first post. The other two go into strategies to help deal with the need to be right.

🙂 tagAught

(P.S. My planned post following up on Modes of Thought will be out – either tomorrow or later today, depending on whether you subscribe to the “day changes over at midnight” theory or the “day changes over after you fall asleep” theory. If the latter, it will be out tomorrow – this is what I say; if the former, it will be out later today – which is what the website says.)

Revamped Links: Neurodiversity Paradigm

Aside

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.

One of those posts – the second one – has a very long title: Throw Away the Master’s Tools: Liberating Ourselves from the Pathology Paradigm. I’m not going to go into loads of details here – that will be reserved for the recommendations post I intend to put up sometime this week – but there is something important that I want to say straight out.

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?

🙂 tagAught

[Added Note: I have also changed the title of my post category and tag of “ASD” to “Autism Spectrum”.]

Recommendation: What Is Autism? by Nick Walker

This is a guest post on the blog Raising Rebel Souls. Nick Walker is autistic, and has come up with a description of autism that matches my own experience and, as I understand it, the experiences of the majority of my fellow autistics, no matter where they might fit on the spectrum. He also removes the pathologizing element from the equation / description, and writes clearly, presenting facts as they are known.

I highly recommend that everyone read this post: Guest Post from Nick Walker: What is Autism?

Or, alternatively, you can also find the details of his part of the post (though not Mom2Rebels’ additional comments) at his own blog, Neurocosmopolitanism, at What Is Autism?

🙂 tagAught

For Emma: Words and Voices

Most of you reading this blog probably know Ariane and her daughter Emma, if only in reference to their blog, Emma’s Hope Book. (If you don’t, click on the link. Really. Ariane is a great resource for parents who are having difficulties dealing with their autistic children, and is a great proponent of presuming competence because of her own experiences.) Recently (as in the last half year, maybe somewhat more), Emma’s been contributing directly to the posts on the blog. One of the most recent posts was about the body-mind disconnect that Emma experiences; her brain knows what she wants to communicate or do, and her mouth (and/or body) will do something completely different.

Poetry, yay!