finding my way through Autistic Burnout

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…

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

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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.

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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.

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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.

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In Absence of Memory – Treasures

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.

The Vaccine Myth Hurts Autistic Acceptance

I will be involved only if your voice is a part of the program.” said my new friend Allison Garber after a series of quick emails back and forth.  I’ve come to really rely on her opinion and perspective on many things.

I’m going to need you to do something before you go any further please!

Click on the picture just below this paragraph (will open a new window) and listen to the documentary first. It’s going to be the  topic of the rest of this entry and one of the most important things I have ever done. It’s audio, under a half hour and features myself and Allison and our perspectives/experiences with how involving Autism in any type of vaccine debate is harmful to those of us living on the Autism Spectrum and our families.↓

On February 6th, 2015 I got a very interesting message through twitter from a CBC (Canadian Broadcasting Cooperation) reporter named Melissa Mancini. I’ve been getting more requests from reporters in the last 6 months because of my ever increasing advocacy for the Autism Spectrum, mostly done on Twitter.

This felt different. It felt like something I wanted to do, but I needed to ask my new friend who seems to understand this stuff better than I do.

Allison’s willingness to be inclusive and her need to elevate the voices of those of us on the Autism Spectrum and not drown us out has been a constant theme since we met.  Her son was diagnosed in 2013 – here, let her tell her own story. Allison gave her 1st ever TEDxMSVU talk just 6 days later (video below) ⇓

I wrote the reporter back and said yes.

On March 8th, just 3 days before my 46th Birthday I walked into the new CBC studios and did something which I could have never guessed I would be doing, but that felt like the absolute right thing to do.  With the microphone finally in an acceptable place I began the interview. Time flew – When Melissa turned her recorder off, we had been there 2 hours!!  I was also given a very personal tour. My past experiences in Playback and Community Television meant I had Scripts to go on and really had a wonderful experience from start to finish. I felt accommodated and safe.

This morning the documentary aired on Atlantic Voice.  As I was writing this I heard the promo for it come on another CBC program and my voice lead the sound clip. A warm rush went over my body.

I listened to it last night though. It aired online on Friday and it took me till the witching hour to listen. I was so nervous. All the nerves that I did not have on interview day, were sure here now!!!

I invited a dear friend to listen with me.  She’s in California, USA and I’m in Nova Scotia, Canada. We were on our computers at the same time.  This is not unusual for us, it’s how it’s always been. We met online about 15 years ago and sharing this experience with her was intensely special and will just further strengthen a bond that is as deep and true as any I experience face to face.

I was shaking as I hit play. No amount of stimming was going to help me sit still any sooner so I rocked, wiggled my fingers, whatever I needed to do to soothe myself as the words passed through my ears.

It’s the idea that we’re damaged, that we were normal, quote/unquote-normal, until something came along that damaged us.

YOU!” typed my friend and it took me aback. I didn’t recognize my own voice at first. Wow. It is a moment I will never forget. It overtook me, I will admit.

It’s been an incredible process leading here. From my brain finally hitting the tipping point and seizures beginning right at the end of 2011, to coming to this place where I am listening to myself advocate and not holding back for countless people to hear. I’ve stepped from the shadows of a 25 year incorrect Manic Depression (BiPolar) diagnoses received as a teenager and fully embraced my proper Neurology of Autism.  The transformation became 100% complete when I heard myself say in the documentary –

Because when you see the vitriol. When you see that people are more scared of Autism then they are of diseases…it makes you step back”

That’s what really confuses so many of us…That you would really rather risk your child getting this disease then being Autistic? What is it that you think autism is that’s so much worse than this?  Like, we’re just people

Another admission – I hit pause and laid my head down on my desk and sobbed. That guttural cry that holds nothing back and leaves it all exposed. It’s a point from which you can then start again.

In my determination to make the path for kids like Allison’s perfect Hugh, I am finding healing for myself through self acceptance. And true to how I live a life of full circle moments, Allison and I first became acquainted on twitter through a seemingly unrelated issue. One that brought me great pain for a long time. I’ve let that all go now with the closing tones of the documentary. That experience brought my website name, the revitalizing of a lost art form for me, and Allison and her family. It’s opened up countless opportunities.

Deviation from the norm

I’ve covered the vaccine controversy in regards to Autism already (click here to open in new window) – so I don’t need to do that in this entry. What I need to emphasize here, as I did in the documentary, is the urgent need to move past the lie of an Autism/Vaccine link as well as past Autism Awareness and onto Acceptance.  A message especially amplified in April as events and organizations as varied as us all on the Spectrum, look for ways to raise anything from money to acceptance to awareness.

All of this can happen, but it doesn’t need to happen at the expense of the neurology of those of us with differently wired brains any longer. We are not tragedies to be looked down upon nor ethereal beings to stand in starstruck awe of.

We are people. We hear and understand more than you seem capable of accepting or understanding. The sooner that happens, the sooner the lives of all of us improve. It’s not us who are limited in our abilities to comprehend – from where I sit it’s a large portion of Neurotypical society who is limited in their ability to accept normal is nothing more than a setting on a washing machine any more.

I hope the documentary (here’s the link again!) will be a step forward towards a better understanding and acceptance.

Clicking this picture will take you to the web write up to go with the documentary.  I was humbled and really excited to see my artwork and photography included. Wow!

googlenews screencapMany thanks to:

Atlantic Voice on CBC Radio Maritimes (those links are near bottom) and all the reporters and people dedicated to sharing our stories and the issues facing the various members of society. And to the reporter, Melissa Mancini who has shown great care, patience, and consideration and has really captured the heart of everything I was trying to say. This will stand as an important part of the growing dialogue towards Autism acceptance not just here, but around the world.

And most importantly my family and friends for all their support, guidance, laugher, tears, abiding of my special brand of stubbornness, and not abiding it too. I love you all so much I’ve done this huge thing so I can be me and stay with you all as long as we can.