finding my way through Autistic Burnout

  •  
  •  
  •  
  •  
  •  
  •  

* Cast Your Net *

I realised something just recently – I’m burnt out. Talking with my one sister about it I said, “I dipped my toe into burnout” and she laughed and questioned, “Just the toe?”

Okay, so I went in up to my knees…” (she laughs at me, again)

FINE I WADED INTO MY WAIST!!

Being Autistic and finding yourself in burnout is a big problem. I’m not talking about when life gets a bit overwhelming and you take a break and can regroup and carry on. This type of burnout is a big problem with very little literature available to help guide us through it, or even help prevent it. The only ones to talk about it are actually Autistic adults like myself. It wasn’t till we started communicating with each other that we realized what it was that was happening to us. I know it was both a relief and terrifying for me to finally have a name for it. Autistic Burnout.

While many people go on vacation to recharge from their own version of being burnt out, it was being on vacation recently that helped me realise just how far back down that rabbit hole I’ve gotten myself.

alicerabbithole

Oh Alice, why must you run off like that, chasing those rabbits…

A few weeks ago my friend and I got to the spot we call Paradise to set up camp which you can’t just drive to — you have to hike into — quite early, and were all set up and ready to go by noon. Once set up I found myself just sitting a lot. Sitting and looking at this…

canal_lake_3_sept8_15_k20d

I’d sit in silence and marvel at the calm that made the Lake into a reflective wonder.

canal_lake_2_sept8_15_k20d

I’d sit and dig my feet and hands deep into the sand. I’d pull out handfuls and let it fall, waiting for a piece to catch the sun and glisten. I’d trace the sand with my hands, fingers wide open and I’d go round and round until I could feel the palms of my hands vibrate all over. The soles of my hands and my feet are almost polished from all the sensory seeking I did with them in the warm, white sand.

I’d sit and watch a single wave come to the shore when the wind was up. I’d find one out as far as I could see and then watch it make the journey to where it ended and contemplate that for a while. Then a new one would catch my eye and away we’d go.

I’d sit and watch the dragonflies, as many as a dozen, dance around me everywhere at dusk.

And I stood in the water a lot, just stood. When the waves were plenty I’d find myself being pushed and pulled by them as they broke against my body. So I’d close my eyes and be rocked by the water. It’s a blissful surrender for me. In that space I can really breathe, the oxygen fills my soul. When the water was calm I’d stand and watch to see if the resident mated pair of Loons would break the surface before gliding by.

canal_lake_1_sept8_15_k20d

And in that space I faced my weariness. With all the distractions gone, I saw how far away from myself I’d wandered yet again. I’m tired. Not just physically, because I am really tired these days, but also just deep-down-to-my-bones, tired. My vital life force feels weak. My memory is a mess, I’m having a lot of trouble communicating and I’m finding myself shutting down a lot.

This is what happens when I’m not being my true Autistic self. So what does that mean? Why do I find it necessary to identify it as Autistic burnout and not just simply, burnout?

Because for 25 years I was labelled as having manic (lovely word, that) depression/bipolar. What incomplete science seen as a manic cycle was really an Autistic person being pulled so far from herself and her internal resources that she would just explode into upsetting situations, extreme emotions, and eventually end with a lack of ability to cope at all. Till that fateful day in January 2012 when I came out of a 3 day coma born of, well, no one should have to go through what I did to get to that place. It was unfair and cruel. Life is unfair and cruel I am told. My brain wiring makes me naïve. I don’t know how to understand how people can be so mean. So it’s easy to catch me unknowing and exploit that. That’s why it is so important that it be seen as a separate experience than a NeuroTypical would go through.

From the moment I accepted I am Autistic, because that took many, many months after the Doctor first talked to me about it, everything changed and I can’t go back anymore. Going back comes with known, serious consequences. I’m not NeuroTypical and while I can do a decent job of passing depending on people, places and things – I WILL suffer if I try to be something I am not for any extended period of time. The longer I try to fit where I don’t belong and acquiesce acceptance, the less I am using necessary tools I need to make my way through this really overwhelming for me world.

The internet is an overwhelming place when you have such a strong sense of social justice and wanting to be truly heard and elevate the stories of others. And when you struggle with the social aspects it can become a very dark place at times. When I finally got to where I could have internet access again after several days without it, I found myself hesitant. And when I did start catching up I felt myself slowly deflating all the good I built up on my trip. So much distress, so many people needing help and being treated unfairly — forget what you heard about being Autistic and empathy — we shut down sometimes because of how deeply we feel, not because we don’t. Don’t carry that lie any further, please.

pg_sept17_15_gs5

Self portrait at night — late summer

The internet is also the place where the #ActuallyAutistic community has made our voice heard in a viable way. I’ve had 2 fairly important, I think, articles published in the last few months. One was a reaction to a local news story (Group homes won’t ruin your neighbourhood, Dartmouth) and a decent amount of work on my part but nothing like the 2nd project. That required reading a 500 page book and turning it into under 2000 word review on what I, as an Autistic person, thought of the book. (Thinking Person’s Guide to Autism : How We Autistics Got to Here: Reviewing Steve Silberman’s NeuroTribes)

The Group Home article which was my 1st ever opt/ed piece ended up being my ‘coming out’ as an Autistic person to all and anyone. I didn’t really connect to that happening till after it was published. This was a local article for a local newspaper that would be read by many locals.  It hit viscerally, just like the moment it hit me that yeah, this is the name for my brain wiring, for how I navigate the world and why I’ve always felt so separate. I actually had a Tribe here on earth and we had a name and I was accepted within that Tribe.  I burst out laughing with unmitigated joy.

What I experience as a joyful thing is still very much not understood or accepted by the majority of people. But I have NO choice anymore. I can’t be what I am not without it making me very, very sick. And since about April when my seizures came back I’ve been steadily getting very, very sick.

What the unwilling-to-see majority don’t get is that I’m not sick because I am Autistic. Sitting by the Lake and able to run my hands through the sand as much as I needed, and it not being a big deal if I was quiet, or noisy. Where I could eat with my hands, get dirty, rock back and forth, hum, script, ramble my endless facts. I was just fine. And when something came up, I could deal with it. In an accepting, accommodating environment we thrive.

So I’ve been taking a social media/comment reading break because I don’t want to get any deeper into this burnout. It’s helping a lot. In the last few days especially I find myself communicating more with those closest to me. I’ve not just gone silent online, I’ve been quite silent offline too. Most days I’ve only been saying a few words verbally. When I’m like this I don’t even listen to music.

I have some very big life decisions that need to move forward now. I’ve been through a books worth of life experience in the past 3.5 years. It finally feels like I have come through to the other side of it. And after being online for almost 19 years it feels like it’s very important to work through most of these decisions in a safe, supported environment. I can’t always just fight for those spaces. I now need to take time to use what I’ve worked so hard for. To walk my talk. To accommodate myself.

And to sit and watch and photograph more sunsets like this.

sunset_canal_sept7_15_k20d


* Cast Your Net *

  •  
  •  
  •  
  •  
  •  
  •  

In Absence of Memory – Treasures

  •  
  •  
  •  
  •  
  •  
  •  

* Cast Your Net *

I was very, very young when I got my first jewellery box. Like many young girls at the time it was a smallish box, covered in satin and when you wound the “key” at the underside of the box then righted it and opened – a ballerina appeared, spinning, as the music box played a familiar tune. Mine had a very delicate tutu. I wanted to be a ballerina back then. I even took a few lessons.

Over the years the jewellery boxes have come as birthday presents, as Christmas presents, from friends and relatives alike. They’ve been small, they’ve played tunes and not – they’ve been grand and had many sliding drawers and doors with glass that opened and closed. And they’ve been simple too, an eclectic mix but all loved for many different reasons.

(all the pictures in this entry will open to their fullest size in a new window when clicked)

Jewerley box

Jewelry Box – Simple on the outside but on the inside…

I don’t quite remember where ↑ this ↑ particular one came from, and I don’t remember how it got to where it was when I pulled it from the depths of a clothes drawer that hasn’t even been accessible in a very long time. But as soon as I saw it a few days ago, I yelled out loud and hugged it.

Treasures revealed

Treasures revealed

And when I opened it? Oh my, how can I explain the collective sensory explosion that took me over? My eyes unable to rest in one place for more than a few seconds…is that? Oh my! I haven’t seen that since? When did I see that last?!

It took me a few minutes to even touch anything inside. I felt an almost reverence towards the chaotically placed contents. I wanted them to rest a bit longer in place before I went to stage 2 of sensory exploration – touch.

Bunnies and FlowersKey chains and bracelets

With each touch of a necklace, a brooch, obviously 80’s earrings, I was granted access to pieces of myself that I didn’t even know were lost. My memory loss has been a bit of a mystery to me. Not how it happened, that part is perfectly understandable though it’s taken me a while to really see the extent of it which is also understandable.

Necklaces

Necklaces! I made the Dream Catcher on the bottom left side.

The mystery is in how I am not as panicked as I thought I’d be. I had a spectacular eidetic (also known as photographic) memory most of my life. I was always worried about what it might be like to lose it. But it turns out you might not stress what you don’t remember, or at least that’s what I’ve come up with so far.

Watch

From a trip taken to Prince Edward Island in the early 1990’s this watch became a constant companion for many years. Lennox Island First Nation is a Mi’kmaq Community located in Malpeque Bay off the northwest coast of PEI.

Always looking to see the big picture this has come just when I needed it. What plagues my memory has after 3 (of course) years started plaguing me in many other ways. I have no problem saying I have Epilepsy, I’ll tell the story of how that came to be but I have yet to accept and understand it. Impatient with my lack of progress my  body started forcing the issue on its own about 2 months ago with the return of seizures in the form of Simple Partial. 3 (ha!) days ago (I really do NOT mindfully plan this stuff) I have (wait for it) 3 Simple partial seizures in 12 hours.

I wish I would have written down just how much I messed up a sentence (spoken) yesterday. When I was asked to repeat it and I “heard” what I said I decided to laugh instead of cry for how scrambled my brain is right now.

This picture has the least amount of items and carries some of the largest meaning

This picture has the least amount of items and carries some of the largest meaning. (L-R) I helped to design the Pin to represent the Hubbards Area Lions Club Cenotaph in 1985. A simple “P” pin from my Grandparents when I was quite young, ticket stucb for Van Morrison concert 1998, a pay stub from the late 1980’s and the key to my first ever car, a 1987 Toyota Tercel.

My creative process however remains a near mystery to me. This started out as me taking 1 picture to post on twitter. The creative process is intrinsic to who I am and through it I heal, I grow, I change when change is called for. Not always easily, mind you. Rarely in fact.

Granddad Treasures

My Grandfather’s Treasures (l-r) Sears, Lions, Legion, Lions and Navy.

The simple box contained a treasure trove of memories that span decades. The far back reach of that span is what makes this discovery particularly appreciated right now. Many of these objects take me back to a time before I was married. After 23 years of marriage you get a wide view of things. Marriage is not easy and rarely properly prepared for. With so much of my 46 years wrapped up in this union (been together 27 of the past 30 years) and with so many of my memories lost or maybe just missing, I don’t have a lot of me any more. And when I go back that far to find me? That kid was diagnosed as Manic Depressive by the time she was 15. She was in a lot of trouble, very little of it by her intended guidance and mostly just a fight to survive moment to moment.

Earrings

An eclectic collection of earrings – I yelled out loud with joy seeing some of them.

Touching, seeing, smelling, these pieces of my history is like a belated birthday gift from someone who you thought forgot – but it was just lost in the mail. It’s allowing me to colour in shaded pieces of my past that have been greyed out for a while now. Gifts from the past that have become gifts once again. Their meaning and personal wealth, doubled. They aren’t worth anything monetarily which makes them priceless to me. The attachment strictly emotional and if physically lost now tucked away safely in my heart and soul forever.

Brooches

I sat back and looked at this assortment and all I could think was wow. Apartment keys, Grandmother’s brooches, the elastic bands to my braces for my teeth!! Guitar pick, bracelets, lost marbles 😉 Key chains. What a gift this rediscovery this has been.


* Cast Your Net *

  •  
  •  
  •  
  •  
  •  
  •  

I akke the effort for you

  •  
  •  
  •  
  •  
  •  
  •  

* Cast Your Net *

This entry is dedicated to Stella Young. Through her Tedx talk I found my way to writing this entry, which is something I’ve wanted to do but just couldn’t let go of that last bit of fear.  Thank you Stella. Rest Peacefully ♥

 ⊕⊗⊕

Why has “this” ↓ not been named yet?

You are losing an online argument and the person makes a spelling or grammar mistake. You grab at the chance to take a swipe at your opponents intellect by pointing the spelling mistake out and….

YOU MAKE AN ERROR AS WELL.

The percentage of this happening must be darn impressive!

I don’t play those games because I’d always lose and in observing these exchanges of communication I’ve become acutely aware of how mean people can be about spelling and grammar.

A few years ago I found a really great article that deals with literacy privilege.  Literacy privilege?  I know, right? That uncomfortable feeling though is what we need to push past to have a better understand of the life of others.  And when I did that I found all sorts of great information and learned more about accommodation and how to strike a balance between myself and others.

Here’s the link to that article.↓

⊕ Literacy Privilege: How I Learned to Check Mine Instead of Making Fun of People’s Grammar on the Internet

I woke up today and worried about the fact I hadn’t written anything here in a while. It’s a lot of work and I have been especially drained. Ever since the EEG at the end of March I have been having Simple Partial Seizures.  I didn’t understand what they were for a few weeks and then when I did I went to see my family Doctor and things went from there. I’ll write about that experience in a separate entry.  They are under control now though, I should mention. Just under 2 weeks seizure free but it was daily, so much better.

(edited to add: had more seizures after the publishing of this article. As of June 29th, 2015 I have just over 3 weeks in. Really hoping this is the start of another long run of seizure free living.)

I’ve really come to understand that I have no control over my creative muse. Today’s turnaround from “what could I wrote about” to here is quick even for me 😀

I did something today on facebook, spontaneously. (and not) Not because I’ve thought about doing this many times and spontaneously because, well, that one is self explanatory!

There are several comorbid (occurs together but can occur separately) conditions on the Autism Spectrum. Mine started to be picked up fairly early, considering where I live and the information available. Epilepsy developed later in life, though I am seeing where the signs and some symptoms have been there for years.  The 2 I am going to write about today are Dyslexia and Dyspraxia.

The comorbid conditions to the Spectrum are really what cause most of it not all of the problems we have. This is where the struggle lies. This is why more and more “voices” of older Autistic adults like myself in the community are asking people to move past awareness and onto acceptance. Please!

So today I opened facebook and started typing about this issue and part way through I realised something. I wanted to finally show you a part of me that I go to great lengths to accommodate others for. I started to wonder, what if I allowed myself to be accommodated? What if I didn’t correct the visual effects of Dyslexia and Dyspraxia for others all the time? Would I still be understood? Made fun of? Will it lighten my load just enough to make my life just much easier? Only one way to find out.

Please know that I do not expect or am asking that my particular set of learning disabilities or issues be the only ones to be accommodated or the standard for anyone else. Some people cannot read words written without some attempt at correction or without punctuation because their brain doesn’t allow without tremendous effort, if at all. I’m no more deserving of accommodation than they are. I’ve just lived in such shame for so long about this and I don’t think I or others like me should any more.

Here’s we go…

Ive thought about doijg this fora vwert long time. Eahc time I do, or start I get too scared. Each tme I show who I rruly am it hurts me more than it jhelps me in teh outside world, so I keep it to myself.

(I’ve paused, this makes me fel such shame and I’;m tire dof feleinghame)

There are sevral co=morbif conditions on the Autism specturm and I have my share,. But teh 2 I’m hightling here are duyslexiua and dyspraxia.

Yes, this is ehat it looks like beofr eI make it so YOU can undrtsand me. Not only do I struggle throuhg this, I then have to corrct it all and hope i find most of it. This is what teh words that make you laught and cry look like before you read them.

Soetimes I dont; even know what I was trying to say.

Sme days tis is much worse and some days beter. This is a medium day.

On hard days I get angry and cry. I eranse it all and you never knwo wat I wanted to say. O hard sdya not only do i have toruble trpying, I have troreubel verbally communicating too.

Communicatiin is many, many things. It’s not just vernbal, or written and those who only acept those as lefitmate foems of summunication are harmign those of us who nees to communicate in other ways as well.

I works hours, sometimes days at the written thigns I share. You can;t see the effort I kae to reach YOU – so today U am givign you asmall poeek into my pecturm world.

Ironivally, those of us who have the most diffuculty with the norms of socirty works the hardest to accomidate those who don’t really needs it.

I want thyat to change.

If you think less of me after this, it’s a meansure of who youare as a persion, not me.

I’m mot correcvitn this – you figire it out – you expericne a small, small part of what it is like to be me.

 I akke the effort for you – can or will you make it for me?

(Facebook says yes! The amazing respone is why I decided to bring it outside of that platform to this one.  Thank you for your kindness!)

pgz_three_may17_15_gs5

 


* Cast Your Net *

  •  
  •  
  •  
  •  
  •  
  •