Neurodiversity and communications

The below is a draft that I wrote in late Jan after a talk I gave. It was a bit raw to post then and I wanted some perspective before I did it. It was a panel discussion I really wanted to do but felt a substantial loss after doing it. I realise that that a lot of the issues were

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At the moment I’m bouncing back from a talk I gave yesterday. It’s hard to want to/be responsible for representing everyone at a non inclusive environment at a non inclusive time. The invisible labour is intense,additional managing to juggle so many things at once (just talking about the presentation not nearly including the life/work things happening at that precise moment), and tactically making one’s way through the conversation was additionally a burden. I’m not crashing but I’m steering my plane through shakey weather.

Structure
So why was the presentation hard. Note that doing this is a CSI into what happened. Autistics (and indeed all ND folks) work differently than neurotypical folks. Personally it’s been a battle that I’ve had in every workplace that I’ve ever been in. Call a meeting with no agenda and talk about what you have on your plate. What I find in most meetings is that the person with the most status gets the voice. That wasn’t the case with this presentation but we did have very light structure. Walking in there (virtually) was fairly nightmarish. I was hoping that my passion and skills were getting me through the discussion, as I do with most departmental meetings in my life, feeling like a battle. But not knowing what was going to happen and not being able to rely on props/slides/what have you, was difficult.

Accessibility
I found that the virtual conference was difficult. The dates were in US format and the times were locked to USA eastern standard time. I don’t know why. It surely didn’t need to be. And as a presenter I had no idea where my room was which added to a sensory burden that I didn’t need.

The platform itself was very bandwidth heavy and as a consequence I needed to log out and lower my screen resolution, change to windowed mode and hope for the best in order to participate. It was geared for business level connection but I was at home at 5am and using my home broadband and had to switch to using my phone wifi as a hotspot.

Maybe the most difficult was something that I thought was going to be a problem. The webcam and reliance on cues. I can usually get by on in person panel discussions by throwing back to a moderator or raising my hand. This was a completely different story. Being so locked into trying to assess nonverbal cues and extraneous information was exhausting and made it very difficult to do. In fact getting back into the lecture after rebooting my connection lead to the issue of alerting the moderator to my presence which is a social game that I don’t know how to play.

And the time. 5:30am. I’ve done a few podcasts and presentations over the past 2 years at these early hours – from midnight to 7am. I’m very eager to lend a hand and soldier on. One of the main reasons though for saying yes to these times, and to be honest saying yes to most things is alexithymia. The way I know how I’m feeling is by observing my own reactions. Most of the time I won’t know that I’m upset, tired or angry unless I analyse my behaviour. So I’m really good for getting up at 3am and doing a lecture – but it will have a negative impact on my executive functioning that will take additional resources to get through. I won’t feel grumpy, and I won’t notice my boundaries being crossed.

Summary

I realise that things have to change. The world won’t change and I can’t expect it to instinctively be inclusive as much as I’d like it to. So I need to get better at telegraphing my needs. That’s difficult when I’m working them out still, but in doing that there’s a better chance that the world (or the people in it) will remember the things for the next person.

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It’s been tricky this year. I realised how much I gained and lost. This is especially true of the autistic community. Of our little community. Pre and Post the mid year it went from strength to failure. I’m glad that I met so many people that validated my feelings by just existing and feeling so similar to my experience. The change from alienation to representation was like an incredible dream. The loss of people and a community was devastating. And returning to the neurotypical world (in the return to work) has been like smiling my way through loss. I need some time to process that change

image: Cyril Cayssalie https://www.instagram.com/cycaphotography

Autistic Pride

I’m proudly autistic. I don’t feel any shame about it. I don’t believe in luck or blessing but those terms are also things I feel with respect to autism. “Lucky” and “blessing” are proud adjacent for me.

“Pride: feeling deep pleasure or satisfaction as a result of one’s own achievements, qualities, or possessions or those of someone with whom one is closely associated.”

I’m proud of my community; the struggles that they face daily and the achievements that they have made in a disabling environment; their self advocacy in the face of being spoken about and over by neurotypical professionals; their ability to create a community and community support through multiple forms of social isolation.

I’m proud of my own achievements despite adversity, victimisation and pressure to conform to a standard that I am not made for.

I’m proud to stand alongside other challenged minorities whether I am a part of them by constituency or as an ally. We are equal in our greatness and worth. We are powerful and strong in our mutual support and understanding.

We all stumble and make mistakes but we move forward. I’m proud of that.

 

Autism and sensory overload

Was having an insta-chat with a parent of an autistic child and special needs educator about learning how to modulate sensory sensitivities and thought I’d share with the group.  It was good to have a positive conversation with parent of … There is an understandable rift between parents of autistic kids and autistic adults and there is a lot of reason for this.  Hopefully we can bridge a gap though.  We are really all fighting for the same equality and a less disabling world leads to whole and empowered autistic adults.

THEM: My question is this: if we don’t teach some desensitization so they can learn self-regulation techniques and maybe be able to tolerate things like stores and doctor’s offices, how do we prepare them to be functioning members of the community and be able to be as independent as they can be based on level of functioning of course? Not trying to offend anyone, especially the autistic community. Just a curious question.😊

ME: As a 49 yo autistic adult trying to hold down a join in an “open office” it’s never easier. I’ve never desensitised. But teaching your little marvel to be brave and strong might be better as its less dismissive. I can take the pain and disorientation but the gas lighting was the thing that made my life hard. Not believing in myself hurt my communication between me and NTs and crushed my spirit (ie depression) 🌻

THEM: That makes sense. My daughter suffers the “she doesn’t look autistic” syndrome and the “well, she can talk so why can’t she just behave” idiocy. There are some things she simply cannot tolerate even after trying and that’s just fine. I like to give her and my students a chance so I can truly see where they are at. This is a great response. Thank you so much for your honesty and kindness. 💜

ME: thank you for being such a wonderful parent and mentor. 😊

Waiting for….

Ok I’m angry. Fair warning.

I had four meetings today. The first was at 9am. I skipped gym to prepare. The last was at 3:30. I had to skip meeting 3 because it relocated and i wouldn’t have time to prep meeting 4 so I bowed out in favour of my team expert instead.

Meeting one. Canceled 15 minutes before due to being too busy. I missed gym.

Now gym for me is nothing athletic. I’m no fitness expert or body beautiful. 20 minutes of jogging in place is 100% for my mental health. Without it comes anxiety and a serious drop in performance.Meetings

So I’d prepped for a meeting that didn’t happen because of bad time management; and i was feeling crappy.

Meeting four. Cancelled 4 minutes after the meeting was due to start because they had booked back to back meetings that had run over. This time I’d prepped through lunch for the meeting.

I did an envelope calculation and 50% of meetings don’t happen because of double booking or overruns.

Now I’m not a fan of meetings at the best of times. They are frequently superfluous and full of the wrong people. And often when they are called they have no agenda and no takeaways and no goals. I do however prep for all meetings. If I’m there i mean to be there 100%.

That’s why I’m looking at transforming my local work structure. My goal is my own team is to set up a Agile/Scrum system to improve my so so project management skills and eliminate unnecessary meetings.

The complete SQL of H.P. Lovecraft

Well this is a little nerdy (non-surprise) but sometimes when delving into the dark recesses of your SQL database you come across some scary stuff.  Places where the foreign keys are very foreign  …

That being said I think that it’s always worth saying that, as influential as the work of H.P. Lovecraft is, his extreme xenophobia and racism needs to be acknowledged and criticized.

ANZTRUC

Proof (for my boss) that I actually did do some work at ANZTRUC 😀

San Francisco post TLCC

So I made it here on my own. I am nervous and surprised that it seems to be working out OK. My trust levels are never high and travelling on my own always pushes my anxiety up. My ambition and my fear are at constant odds.

There was a good exchange at TLCC this year from participants. Someone reached out with her experience that the conference can be so socially challenging to the point of overwhelming. There were a lot of responses to the affirmative and I suspect a lot more in silent agreement. I think even stronger was the message that this is felt by many. We are not alone and we don’t have to suffer in silence.

Just writng this I want to propose a panel discussion on this. Just our experiences and how we cope.

Stay tuned!

2017 **PHEW**

So that was a year!  New job and career change for me and a BIG change of strategy for my new work.  It was a great upgrade in my work life but a massive responsibility.  We came through it fantastically but at 65 hours a week plus travel I’ve been exhausted.

The good thing is that my second job is related but in the coal face; something I’m really good and confident at.  I’m in a big organisation there which gives me a place to look at best work practice. And I’m great at that stuff which helps with the confidence and planning.

To be honest I was dreading coming back to work after the break.  It seemed like though I’d put a mountain behind me there was a mountain range stretched out in front.  A couple of things though helped me get back on track.  The first was sitting down on the first day back and working on a Trello board.  Trello is an online Project Management tool that I’d been introduced to during the planning for the business ticketing/website launch.  I set up columns for each department that had me in their sights and listed every think I could think of with a reasonable delivery day attached.  Inside each of these columns I put Job “cards” that hold the deadlines, Checklists of things to do, and comments.  Truth is I actually I set this this online during job 2, in the quiet moments before I got back. Once i had that done the panic dropped a bit.

Just something that I’ve said before.  I find that my panic levels drop when I chunk out the work.  Then it’s just putting one foot in front of the other.  My partner does this with backs of envelopes to great effect.

Anyway back to the mountaineering. Try Trello if you get the chance.  I’ve used it to even organise my Dungeons and Dragons game so it can’t be too nerdy right?!

 

Phew! What a week

Almost a month really. I’ve been pushing to a big launch for work since I started 6 months ago. It’s a ticketing project that takes a small organisation that outsources it’s immediate CRM needs to an autonomous organisation that calls it’s own shots. I was hired to take the company there six months ago and it’s been a huge learning curve intellectually and emotionally. I feel like I’m running down hill with my legs trying to keep up.

Coupled with that we found out two weeks before launch that the owner was selling our house. Totally crazy.

So we had to move and I had to pull off the biggest job of my career. My anxiety levels were red lining for a week. But the interesting thing was I handled it and on 3hrs sleep a night. I’m actually with this without having slept in 36hrs.

Couple of things were going right. We needed to move. The place was just too small for us and we’d out grown it years ago. This was entirely the wrong time but it was the time we had. The other thing was I was ready. I had my last session with John yesterday and I’m a very different person than I was 18 months ago. Actually I’m the same person but it’s easier to make desicion knowing that I trust my ability to figure it out as I go.

Something that helped was a short seminar (I guess) that I went to at a conference recently. It was about being list in big project management and the advice was, if you feel overwhelmed just start small by putting one foot in front of the other.

That got us through both nightmares.

Brain full

Sometimes my brain gets full at work and I have to go shake it out – aka go off for a 15 minute (coffee) break. Usually 2 breaks a day. Lunch breaks reallmey don’t do it for me. To cluttered and full of people, which feels more like work to me.