Update: Life and #AutismPresentation (Help?)

So, it’s been a while since my last update. Not as long as some intervals, but definitely a while. In that while, a lot of things have happened.

My middle sister got married (yay!). (It was lovely, small ceremony.) I was diagnosed with psoriatic arthritis (answers, at last, to the pain and inflammation!). I joined the Newfoundland and Labrador Centre of Applied Health Research Autism Research Exchange Group (as well as two other Research Exchange Groups). I applied for and became a member of the Newfoundland and Labrador Autism Action Council (which will be working on the provincial Autism Action Plan – let’s hope it has better final results than CAPP did!).

Today’s post is about a presentation that I’m doing on Thursday to the Autism Research Exchange Group, on sensory issues.

Continue reading

#CASDASummit2018: The Unspoken Price of Advocacy Video

Link

So. Here is the preliminary video of the autistic advocates’ panel at the CASDA 2018 Summit. This is not the official video, which CASDA is working on getting professionally edited; this is basically the raw footage with a few edits (title and removing the final remarks of the day) by me. Once the official video goes up, I will remove mine and put a link on this post to the new one.

CONTENT WARNING: The video is just over an hour long, and as I state up front, there are some very difficult and painful things to hear (including mentions of suicide and filicide).

Comments are welcome.

😐 tagÂûght

VOCM Morning Show Interview

As mentioned in the bottom of last night’s post, I was interviewed this morning (@7:30) on the VOCM Morning Show by Paddy Daly. I’m hoping to get a recording of the interview, but they’ve already put a summary page up on their site.

‘Later!

🙂 tagÂûght

#ASNLPanel: Housing/Residential Options

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! 🙂

#CASDASummit2018: Day 2 (Pt 2) – #UnspokenPriceOfAutisticAdvocacy

So, as mentioned in the last post, this post is focused entirely on our panel – First Voice Perspective – The Unspoken Price of Advocacy. Note that the panel was recorded, and I’ll be putting up a link to that recording when it goes live.

The panel consisted of myself, Corey Walker (from BC), Patricia George-Zwicker (from NS), Jackie McMillan (from ON) – all of whom were on the CAPP Advisory Group with me – and Daniel Share-Strom (from ON). There was supposed to be one more, Bruno Hache (from ON), but unfortunately one of his best friends committed suicide on the Monday, so he couldn’t make it.

But before I get to the contents of our panel, I want to share a picture with you – a picture that was taken of pretty much all the attendees of the summit. (It’s not loading into this post, so here!)

Read on, please.

#CASDASummit2018: Day 2 (Pt 1)

Day 2 of the CASDA Summit (Thursday April 19) started out on an interesting note. And by “started out”, I mean 1 am.

I spent the first two hours of the 19th working on the script for my portion of the “First Voice Perspective” panel – finishing writing it out, and then reading it out loud and making edits. (I spent from 1am to 2am doing the latter.) Then I managed to crash – for a while.

The Summit Day 2 session itself also started out on an interesting note.

Read on, read on!

#CASDASummit2018: Day 1 and Self-Care

First day of the CASDA Summit of 2018 (Wednesday April 18). Woke up earlier than I meant to, which was irritating. Read an article from the Ottawa Citizen written by Senator Jim Munson, and got upset about some of the terminology used. (He saw my tweet, and apologized both on Twitter and in person, I definitely have to respect that.)

Got to the summit place (same place as last year, the Shaw Centre, which is attached to the Rideau Centre, which is kitty-corner from the hotel), grabbed breakfast and chatted to various people, including the other ASNL staff and board member there, and then settled up front at the “autistics'” table. 🙂 (AKA the table that most of us sat at, including all of us who were on the “First Voice Perspective” panel.)

Just a warning note before I get into the day’s panels: I was only able to note down certain comments (as opposed to the whole speech of each panelist – thinking of recording certain panels next year for my own info), so I went for the ones that struck me as particularly important in what each of them were saying.

Read on for more details of the morning (I skipped out on the afternoon) and what I did the rest of the day

#CASDASummit2018: Pre-Day Details

So, I’m doing the autistic advocate panel at the CASDA Leadership Summit in Ottawa this year. (I was part of it last year, as CAPP’s last gasp, but it seems I only wrote stuff down about it on Twitter rather than this blog. But they liked us so much last year that they requested a panel by autistic adults this year too!)

I got into it a bit late, because I hadn’t even realized about the sponsorships available, but in time to join the panel. There are three others who were part of CAPP with me, and there were two other autistic advocates whom I’d heard of but not met. Unfortunately, the friend of one died recently, so he’s had to skip the conference to deal with that. (*my sympathies to him*)

So, long story short, I got in. I’m sharing a room with Patricia (like we did for the Exploring the Spectrum conference in Halifax last year), so that’s all good. (Saving what money we can!)

Read on for Today’s Tale

Recommendation: BBC – Autistic Women

I’ve mentioned before that my dad reads the BBC (BBC Video Article: Cat Helps 6 Year Old Autistic) and he sends me interesting articles. This was one that he sent to me today.

BBC: “It all made sense when we found out we were autistic”

This is an excellent article, I can’t praise it enough. It’s about seven women (the first interviewed plus the six that are pictured at the top), all of whom received late diagnoses as autistic, and what that meant for them. And all of their stories resonated with me in some way or another. (One read about being autistic thanks to her mother’s work, and recognized herself in that – that was me except with my sister’s studies, for example.)

The article is focused on the fact that autism is very underdiagnosed in females – at least one of the women has a son who was diagnosed at four and a daughter who wasn’t diagnosed until she was thirteen, for example – and how these women found out they were autistic, and what it meant to them to be diagnosed. In a lot of ways (except for the fact that the article is basically all the women’s stories, with no additions or questions listed, except the numbers at the beginning of the article regarding autistics in the UK), it’s a mirror of the interview I gave the CBC last June.

I highly, highly recommend reading this article. The stories in it are wonderful and moving, and very, very true to my own experience, and so likely will be for a number of other autistic women.

‘Later!
🙂 tagÂûght

#SensoryIssues: #Interoception – #Toileting

Disclaimer: As far as I’m aware, I had no issues with toilet training.

So, a few weeks ago, I saw a comment somewhere (I no longer remember where, but it may have been Twitter) that essentially claimed that the only reason autistics might have trouble with toileting issues is low intelligence (note I didn’t say “IQ”). This is my response.

As we know now, most – if not all – autistics have trouble with sensory issues; sensory issues that when unaccompanied by other elements are diagnosable (in North America) as Sensory Perception Disorder, or SPD. Those difficulties can be summed up in three parts: hypersensitivity (overly sensitive to stimuli); hyposensitivity (very not sensitive to stimuli); and sensory seeking (seeking out certain sensory stimuli). Note that sometimes hyposensitivity and sensory seeking end up focused on the same form of stimulus, and one seeks out that form of sensory stimulus because one is hyposensitive to it.

As we also know, there are more senses than just the commonly known five (sight, hearing, taste, touch, and smell); there’s: Click to continue reading

Let’s Talk About: Alyx, The “Robotic Emotion Teacher”

So, I’ve mentioned Neurodivergent Rebel’s Twitter sessions of #AskingAutistics before, in my post about grief and coping with it. On Saturday (the 13th), she posted about an article on Quartz Media, regarding a robot that the creators say can teach adult autistics to read emotion and facial expression nuances. According to the article, researchers at Heriot-Watt University in Scotland created Alyx. It’s generated a fair amount of irritation among autistics on Twitter, for various reasons.

I’m going to quote from the article, and then give some of my counter-points (some of which I’ve already mentioned on Twitter, but are expanded here). Because honestly, this is not going to work the way the article claims it will. Here’s why (aside from the fact that already a number of autistics are vehemently opposed to it).

Read on, my dearies, read on….

Let’s Talk About: Emotions – Feeling Left Out

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.

Read on for my rambles and thoughts on the matter.

Let’s Talk About: Emotions – #Grief

There’s a series on Twitter about how (we) autistics feel negative emotions right now, prompted by one of Neurodivergent Rebel’s Twitter #AskingAutistics polls. (Which I highly recommend, by the way.) And since there are things going on in my life right now that make this a fairly relevant topic for me, I decided to write a post on it. Or more specifically, write a current post on grief. I’ll probably write about others later, but this is the one relevant right now.

I’ve mentioned alexithymia – the inability to recognize/categorize one’s own emotions, and sometimes to have physical reactions to emotions instead of “feeling” them – before, both when speaking of imagination, and about psychosomatic issues. And there’s also the issue that autistics tend to emote in ways that are not recognized/understood by the neurotypical audience. All of this means that quite often, the neurotypical audience has no idea what we feel, or how deeply/intensely.

One thing I do know about grief, from previous experience, is that I process it very differently from most of my family. (I’m not sure about my dad – we haven’t really discussed that.) Of course, no one processes emotions in exactly identical fashion, whether from the neurotypical or the neurodiverse population… but my way is rather different from most others that I’ve heard of.

Read on for more about my processing and the questions to talk about

Let’s Talk About: Followup #AnxietyAttacks What Helps?

On Wednesday I posted about anxiety/panic attacks, and what happened to me on Monday. As one might guess, it’s been a topic of conversation among my family since then.

And what keeps coming up (understandably enough, especially considering that no one said anything or reacted to me on Monday) is the question: What can be done to help? What helps while the attack is happening, and what helps after it’s over?

Read on for details and Let’s Talk About questions

Nerves Like Exposed Live Wires

Have you ever felt like your nerves were exposed wires – live ones? Jittery, exposed to air, live wires? That might at any time make your muscles do strange things, like seize up? That feel as though there’s static electricity – or any kind of electricity, really, but static electricity gives the idea I’m going for in terms of strength – going along them?

I have. In fact, the reason this post is going up now is that’s how I’ve been feeling almost since I woke up this morning. Even after taking my Vitamin B complex (vitamin B is good for your neural network).

The first time I can remember feeling this way was in the fall/winter of 2012/3, when I was doing an internship with ILRC-NL (now Empower). One of my placements was at a hotel, and the first time I tried to work at the reception desk (as opposed to the “operator room”), there was a vacuum cleaner being used off to my left. My left upper arm immediately started feeling that way – as though the nerves were exposed to air and had electricity stronger than the normal neural communication shooting through it. Sensory Overload Warning!

It seems (for me) to happen when I’m stretched thin, or when I’m stressed and anticipating something that may not be terribly pleasant, or if there’s major unpleasant sensory input (like the vacuum cleaner mentioned above). (Today I suspect it falls under the “stretched thin” category – see my last post.) It’s usually strongest in my upper arms – and if it’s on one side only, usually that’s the left side, or the side that the sensory input that is unpleasant is situated. Both sides, or more than just my upper arm, and it’s most likely to be one of the first two situations.

So I was wondering. Does anyone else get this sensation? Is it something that happens occasionally, frequently, or all the time? Does anyone have suggestions for dealing with it other than “wait it out”? (Or “take a nap and see if that calms it down enough”?)

Would love to hear from others!

Thanks,
🙂 tagâûght

Let’s Talk About: #AnxietyAttacks

Disclaimer

So, I meant to get this up yesterday, but due to things around the topic, I spent yesterday trying to distract myself.

Anxiety (and depression) seem to go hand-in-hand with autism, and no one yet has been able to determine whether they are co-occuring conditions, or whether there’s something about the autistic brain wiring that lends itself to anxiety and depression, or perhaps they’re symptoms of trying to deal with a world not suited to us for years and years on end (which is what I suspect they are, personally, but I’m not a scientist). Could really be any one or any combo of those things.

Basic intro over with, let’s go on to what I want to talk about (and hear from others about) today: Anxiety attacks.

I’ve mentioned before on this blog that I tend to get anxiety attacks when medical issues are being discussed, and they present (for me) like hypoglycemic attacks: lightheadedness, cold sweats, dizziness, shakes, etc. I know one person who “whites out” when they have an anxiety/panic attack, and another who thought they were having a heart attack when they had their first (that they could remember) attack.

The reason this topic came up for me to write about was what happened to me this past Monday.

CW: Mention of dental procedures, not very detailed, but method of injecting freezing stated.

Read on for details and questions

#BoycottToSiri: Here’s Why #ActuallyAutistic Reviews

Disclaimer

As I mentioned in yesterday’s post, I’ve got some links for you of excellent reviews by other autistic adults (pretty sure all of the ones I’ve got are by autistics, but there might be a couple of allistic responses in there as well) about the reasons why we need to boycott “To Siri With Love” by Judith Newman.

But first, I want to express just how disappointed I am – and why – at Ms. Newman’s recent claim that To Siri was not meant for an autistic audience. I know I mentioned this yesterday in my list of grievances about it, but I want to reiterate today as a separate thing.

Any books about autism, no matter who they are written by, have an effect on autistics – in a lot of cases, because they affect the way autistics are treated by the readers of the book and, in a number of cases, by society at large. We may not be the ones targetted as readers, but because of the effect those books have, our opinions, needs, and desires about them need to be taken into account.

No author of a book about autism – or anyone else discussing that book – has the right to say that it has nothing to do with autistics. No one. By definition, a book about autism involves us.

You want to read a book written by an allistic parent about their autistic child? May I recommend Iris Grace by Arabella Carter-Johnson? (Also see my post BBC Video Article: Cat Helps 6 Year Old Autistic.) The author doesn’t try to hide the challenges that can come from raising an autistic child, but neither does she shy away from the joys that can come from the same. And she is respectful of both her daughter and the autistic community, which is always good to see in a book about autism.

Now, on to the links. (Please note that they’re not in any particular order, save how they’re saved in my Evernote.)

To the links and my descriptions….

#BoycottToSiri: #ActuallyAutistic Writer Review of “To Siri With Love”

Disclaimer Trigger Warning: Mentions of eugenics, privacy invasion, emotional abuse, and other potentially triggering elements.

So, I’m not on Twitter very often. I follow a fair number of people for various reasons (writing and autism being the two main ones, but not the only ones), but that’s still a lot of reading that has to be done every day, so I tend to only go on occasionally, and mostly read my notifications.

As a result, I wasn’t on when the #BoycottToSiri movement first started. (I’d never even heard of the book – “To Siri, With Love” by Judith Newman – before.) The first I heard of it was a post by a friend of mine referencing the honestly disgraceful characterization of YouTube autistic advocate Amythest Schaber in the book.

(Hint: “Manic Pixie Dream Girl” is a very negative term, used to refer to female characters who are only in things to appeal to the straight male audience. But even “gamine” would not have been an acceptable term to use. Amythest’s work has absolutely nothing to do with their appearance, and like I said above, it is disgraceful that not only did the author describe them that way, but also that the publisher (Harper Collins, BTW – I encourage everyone to express just how insulting and disgraceful this book is to them) allowed it.)

Anyway. Long story (very long story) short, I was poking around to get some information to send to people about this today, and ran into the Storify of a chapter-by-chapter review of To Siri by autistic adult and parent (and writer) @KaelanRhy. I checked with her, and she gave me permission to post that Storify here.

Continue to read for link and description

#ASNL AGM Results: I’m On The Board!

So, the Annual General Meeting of the Autism Society of Newfoundland and Labrador was this morning. A few people who read this blog know that I applied to be considered for the self-advocate’s seat on the board. As you can see by the title, I got in.

The other applicant for the self-advocate seat happens to be someone who is in my Social Club, and we were both told that the board and Scott Crocker (the Executive Director of the ASNL) were so pleased that there were two of us showing definite interest, that whoever didn’t get voted in would probably still be co-opted for things. 🙂 I’m personally hoping that the other applicant applies for one of the available “At Large Representative” positions that will come open next year.

Anyway, aside from giving everyone the good news, I want to add a disclaimer to this blog. I’ve already put it in This Blog and Post Index, but I also want it here, just in case people don’t read (or re-read, in some cases) that post.

Disclaimer: The opinions expressed on this blog, unless explicitly stated, are the personal opinions of the blogger only, and do not reflect the opinions of the ASNL Board of Directors.

Thanks!

😉 tagÂûght

#ASNL: #AskAboutAutism 2: Everybody Grows Up

First of all, I apologize to Tess and Will – I meant to get this up Tuesday, but didn’t manage to.

So, Monday evening, the ASNL (in the person of Tess Hemeon) organized the second Ask About Autism Livestream evening. (The first was last year – see my post ASNL: Ask About Autism #1.) This time, rather than some professionals and an autistic, there were two of us, both autistics – Will and myself. The theme this year that the ASNL has been concentrating on for Canadian Autism Awareness/Acceptance Month is “Everybody Grows Up”, and that was what the first part of the livestream was about. The second part looks at sensory issues, stims, and executive function, on a very basic level (we did this in half an hour, so it had to be basic 😉 ).

(We’re hoping to do this more frequently, and Tess and I were even discussing the possibility of short daytime livestream discussions as everyone was closing up.)

To see the video, read on! 🙂

CBC Interview: Web Version

The online web version of the interview I had with the CBC St. John’s Morning Show is now up. 🙂

They used two of the pictures I sent them: the selfie I took on Monday (which shows some of my artwork on the wall behind me), and a picture of Imber and I from the year I was diagnosed. So happy they used that pic!

Diagnosed with autism at 35, woman calls it ‘a relief’.

‘Later, all!
🙂 tagÂûght

CBC Radio Interview: June 19, 2017 – Recording

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!

🙂 tagÂûght

CBC Interview: Diagnosis

So, last week I got an email from Tess Hemeon (the Public Relations/Communications person for the ASNL) asking if I was willing to be interviewed about being diagnosed as autistic as an adult. I said sure – I’m looking for new routes to go to help expand my advocacy. So Monday afternoon, I had an informal (aka not recorded) phone interview with an intern working at CBC Newfoundland and Labrador (here in St. John’s). One of the things I mentioned was that I wouldn’t mind doing a formal interview about the matter.

So, she contacted me Tuesday and asked if I was available to come in this morning for a recorded interview. My reaction was: “Yes!” ( 😉 )

Got up early this morning, and drove out to the CBC building for the taped interview.

The interview was with Krissy Holmes of the St. John’s Morning Show (which airs from 5:30 to 9:00 am, Newfoundland Time, on CBC Radio One), and it went really well. Read on for details!

Support Request: CAP – Followup

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.

🙂 tagÂûght

Support Request: Canadian Autism Partnership

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
  • Employment
  • 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:

  1. Learn more about the CAP project please visit: http://www.capproject.ca/index.php/en/about-capproject/project-objectives
  2. Make your voice heard by signing up to Global Citizen https://www.globalcitizen.org/en/content/mp-standing-ovation-moving-speech-autism/
  3. 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.

Thank you,
🙂 tagÂûght

Music: Pressie, NSO Masterworks 4, and Concert Tips

It’s a semi-long post today. 🙂 Time to talk about music! I’ve got a heartwarming story of a present, a review of the Newfoundland Symphony Orchestra Masterworks 4 2016/17, and some handy tips for dealing with concerts for autistics and those around autistics.

Our story begins with the NSO Masterworks 4, though. Click for the story!

CBC Radio Interview: Patricia and Steve Silberman!

As mentioned in my post of the Exploring the Spectrum Conference, on Thursday (March 2nd) afternoon, Patricia and Steve Silberman did an interview with CBC Radio’s Mainstreet NS show. It’s now up as a podcast on CBC at http://www.cbc.ca/player/play/892970051734. And trust me, it’s definitely worth taking 15 minutes to listen to it; Patricia and Steve both manage to cover a lot in that time with the interviewer.

Click to listen to the embedded version of the podcast.

ANS: Exploring the Spectrum Conference 2017 – Wow!

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.)

Read on to find out exactly why I had such a great time!