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

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

MedicAlert Canada Includes Autism

MedicAlert® Canada (officially “MedicAlert® Foundation Canada“) includes “Autism Spectrum Disorder” (as well as “Autism”, “High-Functioning Autism”, and “Kanner’s Autism”) in the list of conditions that they can include on one’s record. I just joined yesterday, because my mother has been worried that if I ever end up in an accident, or some other situation where I could panic and lose my speech, or end up unconscious, emergency responders might not realize that I’m autistic, and that could be part of the problem. (There’s also the concern about cops, and if I ever get taken in for some reason or another – there have been incidents in Newfoundland with the cops misunderstanding autistic behaviours as drunk or drugged….)

Most people (in Canada and the US, at least!), I know, have at least heard of MedicAlert, and know the symbol and what it means (aka that the person wearing it has certain conditions, and to know what they are, flip the ID symbol). But I’m not sure that people necessarily understand the details of how it works.

MedicAlert Symbol

MedicAlert Symbol – Special Edition Bracelet

Read more of the details about MedicAlert® Canada

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?

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!

Fiat Lux!

“Let there be light!” (Or, in literal translation, the order, “Make light!”)

So, yes, this post is about sensory stuff. Specifically, visual sensory stuff, and living with people who aren’t as sensitive to light as I am.

Everyone needs light. We’re a diurnal species, meaning that we’re active in the daylight. There are very good reasons for that, involving the anatomical makeup of our eyes – namely, we (as a species) aren’t very good at seeing in the dark, and vision is our species’ primary sense.

More than that, we need a certain amount of sunlight to stay healthy. It helps our bodies produce Vitamin D, which helps with the absorption of calcium, and assists in preventing depression (or helping to mitigate it), to name just two benefits of sunlight.

Continue on for the sensory stuff….

Autism Upsides Week 3: AWN’s April Campaign

And… onto Week #3 of the #AutismUpside campaign on Twitter! We’ve got more coming in, so pop in and take a look!

On to the Storify (Now Complete)!

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

“Autism Speaks, I Want to Say”

Another flash blog. This one prompted by the Autism Speaks video “I Want to Say”, which was supposed to be about autistics using AAC… but no communications from autistics were actually shown. Which renders the supposed purpose of the video useless. Read more about it here, at the flash blog.

I’m verbal. I don’t need AAC to communicate. But I am by far more comfortable communicating in email and text and via the computer than I am face-to-face (or, gods forfend, on the phone). I am autistic.

I want to say: Autism Speaks, I don’t like you. Things like that video are fear-mongering and hate-promoting. Things like that video portray us as less than human. We are not.

Continue reading

Recommendation: Musing’s Survey #1

Okay, Musing of an Aspie‘s “Take a Test Tuesday” has now changed over to “Take a Survey Tuesday”, at least for a month. I highly recommend them; the questions are asked by ASDers for other ASDers. The first one, now up, is about relationships – friendships, family, romantic.

So, what are you doing still over here? Pop over to her post and either fill out the survey on Survey Monkey, or answer in the comments!

😉 tagAught

Hyper-Tense? Medical Stuff

So, mentioned in the last post that I was going to the doctor this morning. I had an appointment to talk to her about my cholesterol (for which I had a blood test last week, finally), and I also wanted her to act as my referrer to Avalon Employment Inc., which helps people with developmental and intellectual disabilities find and handle work. (And considering some of my work requirements, I could use the help!) Not to mention, I also wanted to talk to her about what happened Wednesday and yesterday.

Please note that if you’re triggered by medical issues, you may not want to read the following. Read on

Hypochondria: Medical Students Syndrome?

I had to go to the grocery store today, to pick up some things for dinner tonight along with my meds. By the time I got back home, I was shaking and in sensory overload. I spent about an hour curled up in my dark room, part of that sleeping, and when I got up, I felt better.

Talking to Mom later, while dinner was cooking, she mentioned what I have since found out is referred to as “medical students syndrome” – a problem encountered by medical students when they are studying certain diseases, they start to associate any problems they might have with that disease, and worry that they have it – because I didn’t used to have this extent of problems going to the grocery store. (Note that it doesn’t affect just medical students, but they’re the most-affected group.) It’s apparently a type of hypochondria. My father is also worried about me demonstrating this. (Quite honestly, I’m sick and tired of being accused of that. As a child, I had psychosomatic complaints, not hypochondria.) I think I need to write this out, and I’d like other opinions.

(Okay, experiencing crying jag here – a red flag, as my previous psychologist put it, that we’ve walked into a sensitive issue. Which being thought a hypochondriac is.)

The thing is, it could also be what I wrote about in my Coping Mechanisms post. It could be a lowered sensory threshold, whether because of the stress of the last several months, or some lingering issue caused by my incompatibility with Effexor. Or it could be that I am becoming more sensitive as I age.

Continue reading

Work Conditions

Okay, I’ve been under a fair bit of stress lately, some of it from sensory overloads and the like at my work placements, and some of it from financial and personal stuff at home. As a result, I’ve been really short on spoons lately (thanks to Unstrange Mind, who linked to the explanation, which I’ve passed on to all my colleagues!), and feeling the fatigue. And my internship ends the end of March, and that means that I need to find a new job.

But things have changed since I last held down a job I could tolerate for longer than a couple of weeks without constant meltdowns. I have a lot more awareness of my needs now, and of what overloads me, and I have a stronger, better support system as well (my fellow bloggers as well as my local Aspie friend – my online writing Aspie friend I’ve had since before I was at that long-term job – and my parents have a lot more awareness as well). Read on….

Cleaning Aids

Meant to do a different post originally, but this is what came up, for reasons you’ll read.

Yesterday, Dad and I were going to sort through some of the stuff in my room to try to get the area in front of my closet clear. (Well, he said that he’d pick the stuff up and my responsibility was to sort it into “Keep” and “Trash”.) However, my nerves were still jangled from what happened Wednesday afternoon (more later) so I asked him if we could do it today instead. He agreed. And onward to the cleaning process….

Asperger’s Diagnosis, Official and Non-

So, here it is, the post where I talk about how I felt concerning my Aspie diagnosis.

Official diagnosis? Relief.

Now, at least some of this was because, well, I’d actually sought that diagnosis. I’d made a point of going to the people who helped a friend of mine get his diagnosis, looking for one. It gave me the ability to access information and resources (including the Disability Tax Credit and the Registered Disability Savings Plan: Gov’t of Canada initiatives to help Canadians with disabilities that result in “severe and prolonged impairment of physical or mental functions” – which, quite frankly, ASD does).

Unfortunately, I’m still looking for some of those necessary supports…. Read further on my chatty opinions and thoughts….

ASD Behaviours and Traits

Warning: Very long post!

Once again, I seem to be writing something other than I meant to because of a response I started writing to one of The Third Glance‘s posts. This one is on my own ASD behaviours as a child and teen – what I know of them, at least. I have vague memories of my childhood, somewhat better ones of my adolescence, but most of what I remember is generic things that repeated, and specific events that stood out in my memory for some reason or another (some good, some bad). I may easily miss some – I’m still learning what is “normal” for ASD and what might have been something else, but these are the ones that my mother and I remember (or I experienced). Not in any particular order, except that of how they occurred to me while writing. Read on for the details

Making Decisions and Prioritization

(Before I get into the details of the post, if you haven’t read it already – or if you read it before Jan. 09/13 – I would greatly appreciate you reading all the way through my First Post. Then feel free to come back. Thank you.)

Originally, this post was going to be about my diagnosis, and how it felt to finally have that official medical validation that said, “Yes, I have Asperger’s. Yes, I am on the autistic spectrum.”

But then I read The Third Glance’s article about how she survived jury duty, and in my response, I found myself explaining about why I wouldn’t make a good candidate for jury duty. I don’t have as much trouble processing audial/verbal input as she does, though I know I’d end up exhausted at the end of each day. No, my reason was both much more and much less complex, in some ways.

I can’t make decisions. Continue on to find out what I mean…

First Post

Okay, this is my first post on this blog, although I’ve been using LiveJournal for a while now. But rather than the general stuff and fiction of my LJ blog (now at tag’s Haven), this is going to concentrate on my life; the difficulties and achievements I have in this life.

I was inspired by two blogs on WordPress to get this done, and a third confirmed that I was doing the right thing. Flappiness and The Third Glance were the ones that inspired me, and Aspects of Aspergers essentially told me I was doing the right thing, just by reading through their blogs.

So, a bit about me.

Currently I work as an intern with the Independent Living Resource Centre, which is a cross-disability organization that aims to help people with disabilities live fulfilling, independent lives.

Independent Living is as follows:

Independent Living is about having choices, making decisions, taking risks, and taking responsibility. Independent Living is about having control over one’s own life.

“Independent Living is not measured by the quality of tasks we can perform without support, but by the quality of life we can have with support.”

–from the ILRC Website

The other things you need to know about me is that I write SF and Fantasy, both fanfiction and original, and I hope to get published sometime within the next ten years at most; and that I love cats, especially the one who happens to be my avatar, Imber.

[edit Jan. 08/13]

Before you finish reading this post, I’d like to make a note about my life, and I want everyone who reads this blog to take it seriously, please. My parents made some mistakes with me as I was growing up. But every parent does that. And mine didn’t have the advantage that many parents have today of knowing that I was autistic (let’s not get into issues of denial and problems accessing services, okay?). I had an advanced vocabulary from the time I could talk, which was at an about average time, and never showed any indications of problems before I entered kindergarten. Back then, that was too late to be considered an ASD. They didn’t even find and acknowledge Hans Asperger’s papers on AS until three years before I graduated high school, and it wasn’t an official diagnosis until the year I graduated. So my parents did the best they could with what info they had. And they went to bat for me with school officials, which wasn’t easy. And now I’m living with them, while we’re all trying to deal with the fact that I have definite, measurable issues with independent living, as proved by the 9 years I spent on my own, and I haven’t been able to get an OT – see my next post, coming soon – and the local Autism Society is being no help at all.

So. My parents are in a very frustrating situation, and are still doing the very best they can to help me. If I make any comments about things that they’ve done, or not done, throughout my life… it is not their fault. They didn’t have the resources we have today, nor did they have the resources we are developing here and now, on my blog and others, with adult autistics being able to tell people what it was like for them growing up. Please take that into consideration before you make any comments on my parents’ behaviour that might be mentioned in here.

[end edit]

Thanks for reading. See you all later!

😉 tagAught