Thursday, December 27, 2018

Autism At Christmas, Masking and the Flame Of Beauty In Being Different.




I have never written about being Autistic at Christmas. Because Christmas is my favourite holiday and I have not wanted to seem like I am complaining or add any sort of downside to the beauty. Today I caught myself on that messed up, worldly logic. I was viewing Autism, once again, through the lens of "other ness" instead of the organic, every day experience it is for me, and thus, part of Christmas too.


Michelle Swan recently wrote HERE (Click): "I am autistic.  Everything about me is autistic. I do everything I do autistically. Over my 44 years I have learned, often quite deliberately, to do things in ways that you will interpret as “normal”. But, I am still autistic, even when you can’t tell I am by watching my behaviour. I am using a strategy called masking to blend in. I am passing as non-autistic. The masking that I do is for your comfort and for mine. It is for your comfort, in that when I seem to be “normal” you aren’t scared of me, you don’t feel a need to find explanations for my behaviour, and you don’t feel a need to go out of your way to support me in anyway, or to have to do things to help me that you might find inconvenient. It is for my comfort, in that when I do not inconvenience you, you treat me better- you speak to me kindly, you value my words more, you respect me. When you don’t know that I am autistic. You also expect more from me. You assume I am capable..." (https://hellomichelleswan.com/masking/ )





Christmas is my most wonderful time of the year. My husband teases that it is my essence of "innocence, sparkles, colour, gifts, and childlike wonder." Basically I can relate a LOT to Elf. 
We do the Santa experience with no shame, full blown...it's all about WONDER for our family. Unlike Halloween - click HERE (which is my next favourite) or Thanksgiving (click here), I do not experience the same level of sensory burn out, because my inner self lines up so closely to Christmas that I can tolerate more 'Holiday.' Yet, I am still me. As Michelle continues to write HERE, "But it is a double edged sword. Because I am not the same as you. I am autistic. So even though I might be able to make myself appear to be like you for a while in most situations and contexts, there are some things I just cannot do, and some I can only do up to a certain point before my resources are stretched beyond capacity and I can’t mask my autisticness any longer.  I know what the social expectation is. I just can’t always meet it. I feel upset about it. Embarrassed. Ashamed. My internal self talk mimics your outward expressions, “you can do better”, “pull it together”, “come on Michelle, try harder”. Just like the knowledge that people want me to be a certain way, I take it on and internalize it. In the same way that almost everyone around me unintentionally taught me as a child that conformity is the goal, I reinforce to myself that I need to be what you expect. "


To illustrate this point, I will take you through some beautiful moments this Christmas, with photos to enhance the experience, but give you my version of what happened and the miscommunication that can occur along with the immense beauty involved:
Pictured above, we went to a market place with my husband's side of the family followed, later that week, with a sleepover at my sister's home. Following the Market, we walked around a Mall for about an hour enjoying the Christmas Decor and festive spirit. I was prepared for the onslaught of sensory and knew it would be a insanely busy near Christmas. I have also been depleted in my iron stores at the lowest I have been all year and knew that I would have to really up my acting game to seem energetic. I BROUGHT the energy, the conversations...and some of my quirkiness, because when I am trying that hard, some of my normal self will inevitably seep through. As we were walking with my husband's sister, children and father, I was chatting happily, while my children were steering me away from close, crash collisions with passerbys. I was completely oblivious to anyone in my path. This may seem rude to those I am oblivious to, but it is honestly because my executive functioning can not comprehend one more aspect of the outside world. I felt proud that I was carrying on conversation even though I felt like my coat was so heavy and taking each step was painful drudgery. I was proud that I was breathing normally even though my heart felt it was working extra hard. That I was taking interest in what they enjoyed while acutely aware of the sounds of people and the echoes amplifying, smells of popcorn, B.O., foods, soap stores, plastic ect. The sensory that most people can tune out after adjustment, I am continually CHOOSING to ignore or at least push back into my peripheral. So of course, some of my normal checking of what comes out of my mouth also does not get censored as much as usual. AKA what my family lovingly dubs "quirky behaviour." 


I was in the middle of talking with my nieces and nephews when I spotted striped pants in a window that reminded me of Katherine Hepburn's style in "Bringing Up Baby" or "Philadelphia Story." Because 1940's/50's were the MAIN obsessions of my youth, anything related to that period, especially film wise, will probably bring out my off the cuff comments. In the middle of a sentence I turned around to my husband and his sister and father and without taking a breath I pointed and exclaimed over the heads of people weaving out of our group, "LOOK BABE! It's Katherine Hepburn pants!" and then I promptly finished the sentence I had started before about school with my nephew and niece without missing a beat. But all of their laughter registered in the back of my brain enough that later I asked what was so funny. My husband replied, "We all just think you are adorable that's all. My sister laughed and told me you were really cute. It's your joy and obliviousness to the fact that most people do not act like you do in public places I guess." I was flattered that I was thought of cute which is better than what I used to be thought of ( snotty, aggressive or rude.) I also was baffled that it was a big deal. I thought I was doing SO WELL at being normal:) I surprisingly enjoyed myself for all the exhaustion I felt- seeing all the Christmas lights and sparkles kept me full of joy and comfort. Normally I can barely tolerate Malls, but at Christmas, I can focus on what brings me inspiration and enjoy. Yet, even with a positive experience, it still took me three days alone to recover from a good time. 

Pictured above is my younger sister with me...she is a decade younger as evidenced by the lack of wrinkles opposed to my frown lines. In some ways it is is clearly obvious I am older and more experienced, but in other ways, she will always trump me...for instance in the genre of "capability." I can't drive myself anywhere, go to appointments by myself, or cook for myself...which severely limits me and what I do. She of course, does all these things. We decided to spend the night at her house because we had appointments the next day in her vicinity.

In the evening we took a drive, after getting our favourite Second Cup Coconut Lattes and viewing the richest homes decked out in lights and Santa themes. It was magical. As we were driving though, we passed a dumpier part of town and on my left there was a dilapidated building with a shabby light that read, "Virus Removal." My brain was trying to figure it out, but it took the Aspie/ Autistic literal route and I blurted out, "VIRUS REMOVAL?!?!? People actually BELIEVE that? How can that be a thing? How is that legal?" and everyone died laughing. I was still confused and thinking in my head that anyone who was innocent ( and desperate) enough to go there looking for a cure would walk out more diseased than they already were. But on the outside, I was laughing heartily with everyone else, because I have learned that once the situation is explained to me, it's almost always funny, and I may as well laugh WITH people and understand that it's not AT ME per se, but more enjoying me. (At least that is how I choose to look at it.) My sister, between laughs, explained that it was for computers, which still seemed sketchy to me, but it was better than the image I had in my head of a rusty needle puncturing someone to extract an unseen and incurable virus out of their blood.

Later that night at the sleepover, my children slept soundly and I was awake till 6:30 AM. I was sick, exhausted and panicky. At 5 am I had to keep repeating, "You are brave, You can do this. That sound is just her furnace, that smell is the food being cooked from the people upstairs, the flashing light you tune into every few seconds is just the smoke detector, your stomach hurting is from all the mango you ate at supper!" Even though I love my sister's place and felt completely comfortable and taken care of with my husband and children beside me, my sensory system was on full threat alert. For anyone who has watched the movie, "Temple Grandin" with Claire Danes, It was akin to that moment when she walks into her room, which she has loved for months and it feels like a horror film. Because the maid had left the fan on, and suddenly the curtains were swirling and her room looked foreign and scary... She runs out of the room screaming with her hands over her ears and enters full meltdown mode because her brain can not make sense of the "new" environment. Gah, I was SO MAD at myself because each time I would almost relax, something new would get my attention. I was exhausted and close to tears because I was supposed to be sleeping so I could have fun the next day. I was "supposed" to be "normal" and be having a fun excursion. 
How was I supposed to be able to visit my children in the future if they do end up moving out? How was I supposed to do future hospital stays with whomever may need me? How was I supposed to travel if ever the need arose? These questions were running over and over in my head. I felt all of my disability and then some...YET, I also kept telling myself, "Yes you may be disabled in some things but you are so capable in others...Why must this define what you can do?" To which my other voice would reply,"Because it's ridiculous...it's supposed to be so simple. You are in your mid thirties, gave birth to three and was pregnant five times, have a beautiful home and are respected among some of your peers yet you CAN NOT sleep over at your sister's house without a full blown panic attack and being up all night!" To which my compassionate self would reply, "Go to sleep, it will be better in the morning. You can do hard things. You are brave. Difficult experiences to someone else would be a walk in the park for you...it's all relative. You are brave..." And then my other voice would show up again and on it went for hours and hours and hours until I was so sick, the thought of an inevitable hospital trip ended up shutting my brain down at 6:30 am till I awoke at 8am.... 

And yet, despite that terrible night, I ended up rocking two medical appointments, one of which was being poked by a needle over and over again, and the other was my daughter's ultrasound to which the technician was so impressed by my ability to read the ultrasound behind her that she gave me all the information I asked for. I recognized a cyst and asked the type and she replied, "Wow most people don't see that or understand the anatomy of ultrasound. Yes you are right that is a hemorrhagic cyst that just burst recently..." And normally ultrasound technicians are not allowed to discuss any results but because I was neutral about the subject matter, could keep up and was curious we discussed the entire process like two co workers would. This was followed by an insanely packed trip to Costco, where yes, I did walk around like a zombie and I don't even remember how I managed to walk out of the store, on one and half hours of sleep, but at the end of the day, I knew I was different... Which should not shock me as deep down, I KNOW it, yet somehow it always does.



Honestly, sometimes I don't wish to write about these topics because I don't want people like my sister who reads my posts sometimes, to think I had a terrible time. I don't want the situation to be marred or viewed as me complaining. I also prefer to focus on the positive with the people I love. I had some lovely moments during the sleepover. I also don't want people to stop inviting me even if I say no, because of course, everyone deserves to be wanted by those they cherish. YET, so often I don't have the words at the time to express my needs or inner thoughts. Autistics often communicate best, if they can, in writing, and it would be a disservice to my children who have similar struggles, but do better because of THIS factor, to know my inner process too.
Leading up to Christmas I went label crazy. I repainted and labelled my entire pantry, cupboards and fridge. My husband thought it was a little OCD, but I enjoyed it. For me, cleaning and organizing is an energy outlet when I feel there is a lot going on. Even if it's all good stuff. I needed the "down time" of cleaning and painting while pumping Christmas tunes. Readying my home is preparing my spirit. We re did both trees twice ( and a third time for the living room due to burnt out bulbs!) But each time I savoured the process.




 Yes, that is the Balrog sitting on top of our Library Geek tree....


 My Jewellery tree in our room even got some Christmas love.
Our living room got done thrice but I loved the result.


Unexpected gifts in the form of iron keys, sunshine and twinkle lights are some of my favourite things.


 Each child made their own Christmas Trees out of tomato wire and garland and decorated them for their rooms:
This season was full of beautiful little moments. The snow was fantastic and dreamy whilst Christmas tunes were played, the kids enjoyed home made baking, and we had many moments of ordinary bliss. I love my life. But I love it at home. I don't seek many outdoor adventures nor need to travel to find beauty and wonder. 











 The Season for me is opening our gifts to the children early because at Christmas it is too much and I want them to enjoy singular aspects. It's about Christmas PJ days and reading in the library, having the people we love over or going to their homes...but yes, in all of that, I AM still Autistic.

 What shocks me the most is my unexpected outbursts. It takes me a lot to get to a moment when I have no control or many little moments that add up to suddenly snapping at something that seems insignificant. My mother called to discuss the menu for our PJ opening night at her home on the 23rd. She was on speaker phone and I over heard her telling my eldest son that we would be having cold cuts, veggies and cold fruit. I yelled, "No!" so vehemently and angrily she went silent on the other side of the line. My daughter's jaw was open and my husband looked at me like I had grown another head. I didn't have any words of explanation nor could I communicate my distress nor did I fully understand WHY I was distressed. My mom said we could discuss the menu later and promptly hung up while I endured the censorship of my little family. Finally, almost in tears, I figured out why I suddenly had a violent aversion to cold cuts. Half an hour later.... "It's just that summer is great for that menu but in the winter it makes me feel cold and yucky. I crave warmth and on a special night it should be food that matches the Season. We can tell her we will eat at home first if it's too much work but I just can't stomach that food." I felt embarrassed and six...but it was what it was.







I knew I was being completely Autistic in my aversion but the thought of that meal made me want to hide in my closet or throw up. I still can't fully give the words as to why but it created such a visceral response in me, and after days of outings and being at the mercy of many people's wishes, I finally wanted something that felt like HOME outside of home. My mother ended up being great about it and we had a lovely gluten free brunch for supper. My husband teased that everyone bends over backwards for me, which stung a little, because there is truth there in some aspects, but also there is the fact that I am continually doing THIS for other people. 

"My behaviour will change from what you have come to expect from me. You will call me “angry“, “clumsy”, “antisocial“, “rude”, “awkward”, “aggressive”, or “weird”. If you bring it up with me I will sometimes just say “I am tired“. But I am simply being autistic in public. In a child it might look like a tantrum. In an autistic adult it often looks like a sudden withdrawal with no explanation. It often looks like unexplained tears that you assume are unjustified because you don’t see the reason for them. You might call them weakness. They are not. They are a sign of strength and determination. And even the tears are for your comfort. They are what happens when I know I have to shut down for my own health and safety, but I choose not to in order to do something you expect of me. And later, when I am alone, I feel intense anger. At myself. For choosing you, again, over my own self care. Because my masking isn’t honest and it lacks integrity. It hides who I am. The benefit for me is short lived and fraught with complications. There is nothing wrong with me. Nor any real reason why I should change myself to conform with your standards of normality. It is a burden that I carry for you. And I wish I wouldn’t do it." (https://hellomichelleswan.com/masking/)







It's not that I wish to be understood by the world because that would be boring. I like to be mysterious. Sometimes sensory things excite me or do the opposite of what they normally do and I do not wish for people to expect the same reaction because it's not always true. I like protecting my privacy. I don't share my inner process to anyone verbally unless it is my husband and children or rarely some of my closer friends... Because I process inwardly and work things out on my own. However, on writing occasionally I share timidly, not to be asking for special treatment or even help. Because I crave independence. So often it is taken away from me in many aspects so I keep what I can keep or do...Sacred. I know I am also strong, capable in odd ways and add value to life. I LOVE LOVE, LOVE my life and do not wish for posts like these to be misconstrued as dissatisfaction. SO why? Why write about my favourite season within this lens? When I could have talked about all the beautiful days we had or the fact that we have had people over EVERY single day for 17 days straight and despite being an Introvert and Autistic I have enjoyed most of it and been hospitable and received as much as I have given? Why discuss Autism at Christmas when Christmas is when my spirit comes alive and everything seems merry and bright or if I am struggling, it still seems to be a different sort of dark beauty? Well, it seems I just answered my question within that last question.


Christmas is still MY experience within a different lens...and maybe, just maybe, it's another person's too...and perhaps the more stories are being told all over the web, from fellow Autistics, the more differences can be at least tolerated instead of viewed as rude or aggressive or ignorant?





In the end, the moment pictured below sums it up. I was freezing, drained and my executive functioning was not computing the fact that I could go get a sweater or a blanket ( it never does...if I am covered it's because my family notices I need something warm.) I noticed the fireplace in the Kitchen was on from lunch so I plopped down in front of it and was texting my bestie. I was snapping a picture to show her where I was, when I realized what an interesting picture it took. I was surprised to see my reflection. So I snapped a couple more and was pleased at how the tree was captured behind me and I did not look as tired, cold or as different as I felt. In fact, I looked like I was purposefully posing and a completely "normal" individual. I loved that the picture did not show that I was just about to tear my earrings out because they were driving me nuts or that my legs had missing shaved spots because that often happens with executive functioning or that my deep wrinkles were not super harsh from barely sleeping the night before. I loved that the oranges were peaking through on the cupboard speaking of abundant choices and that the fire in the reflection reminded me of one of my favourite songs when I need a little self, pep talk, "This girl is on fire...She's living in a world and it's on fire, feeling with catastrophe, but she knows she can fly away, Ohhhh oh oh oh oh. She got both feet on the ground. And she's burning it down. Ohhhh oh oh oh oh. She's got her head in the clouds. And she's not backing down. This girl is on fire. This girl is on fire. She's walking on fire. This girl is on fire..Looks like a girl, but she's a flame.."


To those girls and guys on the Autism scale, or any place of difference really, I hope that you can celebrate yourself in any Season, while also being aware of the moments that may make you stand out. In this Post- Christmas Season I hope there are still glimmers of magic, cozy fires and subtle flames that highlight home, belonging and comfort. 
With Tidings of innocence, joy and WONDER.

(Videos of the last part of our Yearly Tradition of reading "Twas the Night Before Christmas" on Christmas Eve, taking turns as a family reading...it's neat to see the growth and differences from year to year...and I am generally exhausted every time we do it and wanting it to be skipped!)