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Playing with Landmines

Working at learning to play the game & still be authentic!

I’m Not Unemployable, I Just Have Asperger’s

I read voraciously, and write almost daily but this past week I wasn’t feeling the love from my inner muse. I ran across Rosie Sloset’s article “I’m Not Unemployable I Just Have Asperger’s” article on “The Money Maven” online and it’s brilliant.

The traditional employment world just doesn’t fit, at least it didn’t for me. Working online is an ideal situation. I love the thought of wearing pajamas, drinking coffee, avoiding peopling, and still making money. And while I haven’t succeeded at achieving an income online yet, it is my goal for 2020 to start making this dream a reality.

Throughout my career I have tried every type of job there is…well, maybe not all of them, but a lot. I’ve worked as a care aide, a waitress, an editor, a barista, an administrator, in merchandising, in sales, as a cosmetician, a consultant, an administrator, as a daycare owner, etc. Many of the roles work for a while…until they don’t.

Being paid to write online is my dream job. There are still people involved, but you don’t have to see them every day, and ultimately you have more control over who you do talk with, and why. Plus, for those of us that write regularly – no matter what your genre of choice is, writing is both creative and cathartic. It feeds the soul – at least it does for me.

Until I can support myself as a full-time writer, I have to somehow manage to keep another job. This week I’m starting a new job…again. I love the learning process of starting something new, but I dread the new colleagues, politics, etc. I always feel like I’m playing hop-scotch through a minefield…statistically speaking it’s only a matter of time before I jump on a landmine.

Wish me luck, I’m going to need it. New environments always drain me, but the team I’m joining seems rather low-key so I’m hopeful this could be a fit. I was completely unmasked during my interview and it was so freeing to finally be authentic, no fear! This time I disclosed my need for accommodations, and to my new manager’s credit he was very open-minded. Not at all the response I was expecting. Perhaps the work world is starting to be more accommodating to neurodiversities after all. Wouldn’t that be nice?

Until next week my friends,

Prairie ❤️

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Language, Love and Laughter

“The limits of my language mean the limits of my world.”

Ludwig Wittgenstein

After ringing the doorbell, I try to wait patiently and mentally review what I need to do to survive this visit. Supporting my mom’s needs successfully is a delicate balance. Thankfully, she has a tell – her appearance usually tells me what kind of day to expect. So when she greeted me at the door, her hair neatly coiffed, makeup carefully applied, dressed in a bright blue blouse and her favourite jeans, I can’t help but feel relieved. “Good Morning, Mom!” I greet her cheerfully. “I brought you your favourite tea and some breakfast.”

My mom has Alzheimer’s. I wish I could say I handled her diagnosis well and supported her with grace from the start. I didn’t, not because I’m autistic, but that certainly didn’t help. Alzheimer’s is a life-changing event for the patient and the family. Like many Alzheimer’s sufferers, she was great at hiding her memory loss, as she feared the loss of her independence. Mom always has lived life on her terms. She is a strong, independent woman, a scholar, a feminist, lover of children and animals, an accomplished cook, a lover of a great joke and comedians, an environmentalist, a devoted gramma, and very likely an undiagnosed Autist. But gradually her ability to mask has left her. I am learning for the first time, at 49, who my mother is. There is no mask between us now.

But yesterday, my initial assessment was correct. She was lucid, her bright blue eyes sparkling, her dry humour sharp and she was in good spirits. It was clear she was glad to see me, and she loves it when I bring her tea. The hard part about visiting is my mom is usually so restless and agitated. She struggles to sit still, to relax. It’s painful to watch. She fusses constantly – trying to feed me or make me tea or tell me one of the stories about rural life when she was a girl. These things used to annoy me, but her fussing has become endearing. She recognizes me still, and that is a victory.

The plan for my visit yesterday was to downsize her kitchen. As big changes can cause a stress response that results in irritability, anger, and irrational behaviour I suggested that we do a little at a time and stop when she has had enough. That way neither one of us would get overwhelmed. It ended up being a good strategy. We organized all of her recipe clippings, cleaned 5 shelves and one drawer, and I washed the dishes and cutlery and returned them to their respective spots. It took about four hours…mostly because she was reading out the names of every recipe, and asking me if we had ever made it, was it good, should she keep it? She was pleased with our work at the end of the day, and I managed to help her recycle an entire bag of plastic bottles, removed a full bag of garbage, and took a small load to the thrift store for her when I left.

Most days with my mom don’t go as well as yesterday. My mom, like many Alzheimer’s sufferers is angry that she has this disease. She’s bitter at times because she is aware of her cognitive decline. She’s understandably frustrated. But sometimes it’s me…If I’m having a bad day I have learned it’s okay to delegate what I need to do with mom to another family member. It doesn’t make me a failure as her caregiver and both of us benefit from me taking a day off. On other days I find that meditating or exercising before visiting makes all the difference. I usually have to force myself to do it, but I always feel better afterwards. It gives me the patience and focus I need to avoid being reactive. I am then able to use the skills from my caregiving toolbox to deflect and address her emotions without it overwhelming me. “Do not engage” has become my mantra. Redirect, Distract. Deep Breathing, and Delay Your Answer (Think First) are all tools that help me and my mom. She is happier. So am I.

When I was learning about how Alzheimer’s progresses, it struck me how much her struggles resemble my own. As an Autist, change, especially ones without transitions, can shake my foundation, and it makes me feel like the ground I stand on is unstable. Over the years I have learned to adjust my routines on the fly. Likely that is due to working in customer care for most of my life. Typically change for me leads to major stress, anxiety and imposter syndrome. I am, however, skilled at keeping those side effects behind the mask. It affects no one other than me. But as a child I was far more rigid. I struggled with transitioning from one task to another. If someone interrupted my routine, it upset me, and my focus was difficult to reset. So I empathize with my mom, it is a brave new world for her. I’ve always believed she is also on the Spectrum – we are so much alike. And now I’m watching her try to cope with the world as her mask, her routines and her coping strategies disappear, and there isn’t a damn thing I can do about it. It’s no wonder she is restless. Change may shake my foundation, but it’s at least an 8 on the Richter scale for her.

Four years has passed since I first noticed small changes in my mom’s personality, and almost two years since her diagnosis. In many ways it has been a hard journey, and one for which we were unprepared. I left my job in 2018 due to caregiver/autistic burnout. I guess you really can’t be all things for all people. I know, because I tried.

It has taken me over a year to recover. I am not proud to say I resented having to leave my job because the stress of caregiving and a high-stress job pushed me into burnout. I resented my siblings for not helping me. I resented my husband and children having a life, despite their unwavering support. It was a big pity party for one.

Burnout crept up on me. I spent all of my days every day either at work or at my mom’s. I slept about four hours a day. After many months of sleep deprivation and stress, it hit me like a tsunami. I had no interest, no energy, no words. I became reclusive, avoidant. I stopped writing. I abandoned self-care and lived in yoga pants and t-shirts. The only time I left the house was to help mom. I made excuses to avoid going out with friends. I took time off work at the urging of my doctor, who initially diagnosed depression. But when I didn’t bounce back after three months of treatment and rest, we had to revisit my symptoms and reassess.

I thought burnout must be like depression, and there are similarities. It’s the intensity of it that’s different. With depression I can usually force myself to go through the motions, and pretend I’m okay. I’ve had a lot of practice. Burnout was totally different – no amount of rest helped. I was exhausted, and it took a long time to feel like myself again. Looking back, I feel like burnout for me at this time in my life was necessary. It forced me to evaluate what is truly important for me. To live my life on my terms. To focus on being okay with being me. I wouldn’t wish it on my worst enemy, but for me burnout was life-changing.

There is a part of me that is embarrassed, as a woman in her late 40s, to have hit burnout. To other people it must look like an extended temper tantrum of a spoiled child. I don’t offer apologies. Growth is painful for everyone, and even if it isn’t as obvious as my experience, everyone struggles. It is a part of life. I believe that part of the reason for my burnout – other than obvious self-care deficits – is the intensifying of my autistic traits as I age. I feel more and more like neurotypical people speak a language that was never shared with me. But I’m tired of being the one doing all of the accommodations. It’s hard being a round peg pounded into square hole. What that means is I have two choices, I have to advocate for accommodations, to help others speak my language. I’m thinking of expanding my caregiving to include other seniors, and run my own company. At least I’ll like the boss.

Mom called me tonight to chat and see if I could help her again on Wednesday with her cleaning. I’m impressed that she is asking for my help. She is learning that interdependence is not the same as losing her independence. It’s a big win. And she not only remembers our project, but she hasn’t shown signs of the usual irritability that comes with a change in her environment. I breathe a sigh of relief, and smile into my cell phone. The last two years have been especially frustrating with mom – she just didn’t speak my language anymore. I’m glad I’m learning hers, I know she has so much more to teach me, even if I know all her stories by heart.

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Autistic Burnout and Awesomeness

I am inspired today to write about working when you’re autistic. There is so much stigma attached to acknowledging the autism in the workplace that most Auties I know, including myself, simply won’t disclose their autistic status as it limits their ability to find work that challenges them and holds their interest.

Most autistics are under-employed, or unemployed. I know many very talented people, in every industry, who have managed to find their niche and they are accepted despite their “eccentricities.” Not one of them have ever told their employer or colleagues that they are autistic. They want to avoid, as I do, being the subject of office gossip, condescension and discrimination.

No matter what HR departments say, discrimination exists and it does affect out employability, our ability to stay employed, our potential for promotions and the perceptions of our boss and colleagues. I have managed to be relatively successful until recently, it’s exhausting to constantly mask and feign all of the appropriate responses every moment of every day. Poor self-esteem and imposter syndrome is common. The stress causes the mask to slip, it’s inevitable. Sometimes, it won’t be noticed. But when the mask drops, the result can be catastrophic.

For myself, I’ve spent the first 25 years of my working life being reasonably successful. The only time I left a job was to raise my family or to take advantage of an opportunity. I didn’t have any issues in staying employed. Then, two years ago, I hit full-blown autistic burnout. The mask didn’t just slip, it shattered. I shut down. I took three months off work, and then left it entirely. I couldn’t pretend anymore. I was exhausted, demoralized and depressed. It took me almost a year to fully recover, during which time I worked in a casual or part-time capacity while caring for a parent. Three out of four of those jobs were a bad fit from the start, but I couldn’t walk away. Early programming by my mother that insisted that the needs of others trump my own prevented me. I know now I went back to work before I had even begun to recover. Failure was the natural result.

The last job, however, I loved it. It was a perfect fit for me. I felt accepted by my team, enjoyed the work, it was creative and challenging, and I excelled with the clientele. They let me go because “I wasn’t the fit they were looking for,” six weeks into my probationary period. No other explanation. I was mystified, I still am.

So now I’m going to try something new…I’m going to disclose my autistic awesomeness ahead of time. I’m owning it, consequences be damned. I’m hoping that the enlightened HR parameters actually work, and accommodations help me find a spot where I not only fit, but I’m appreciated for my authentic self. That’s not too much to ask is it?

(Image: “IMG_3769.JPG” by The Ten Pin Bandit is licensed under CC BY-NC-SA 2.0 )

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Introducing The Prairie Asperian

Hello everyone, and welcome to The Prairie Asperian! This blog is about the many wonders of being neurodiverse. It reflects who I am, and my journey as a late-diagnosed Asperian (a.k.a. Aspie) woman. For me it is part self-discovery, part-advocacy and part-education about Autism Spectrum Disorder (ASD), Level I, (formerly diagnosed as Asperger’s Syndrome.)

This blog is also about life. My life. The Asperian Life. Life in general…its highs and lows, and how to embrace your differences and find your superpowers as an Aspie and thrive. It’s about the right to be who we are in a world full of rules that we didn’t write. Its about finding our tribe and embracing authenticity without the mask. Its about education and advocacy social acceptance to be who we are, with treatment focusing on coping skills. As a part of the newest social civil rights movement for Neurodiversity, I agree with Dr. Temple Grandin when she said, “I am different, not less.”

I couple of things I should mention:

  1. This blog, like so many others…has the usual boring disclaimer. This blog represents my views only, and does not represent any medical or psychological expertise, real or implied. If you suspect you may be on the Autism Spectrum, please see your doctor to arrange for an assessment with a specialist.
  2. I have no wish to debate the pros and cons of identity-first language and person-first. For me person-first language is demoralizing…I am not a person with Autism, I am Autistic, or an Asperian/Aspie. Person first language, for me, implies that I am flawed, or broken, or being Autistic diminishes my value as a person. Please respect my choice in this matter. Thank you.
  3. If I can offer support or advice, please email me directly at theprairieasperian@gmail.com. I would be happy to share any insights I can, and grateful for the opportunity to do so.
  4. If you have ideas or questions that you would like to see me address here, shoot me an email and we’ll go from there.

Thank you for joining me on this journey! I hope you will enjoy my blog.

Much love,

Prairie

Fear, Anxiety and Spiders

Spiders…ewww. Spiderwebs, on the other hand, amazing.

Many of my earliest memories usually involved hanging out with my brother. I always thought, like many little sisters do, that he was so much cooler than me. He was fearless and smart. No one gave him a hard time. He wasn’t in the popular crowd, but he didn’t care. I idolized him. I watched TV shows, played games, and listened to music that I didn’t like – I’m sure he would be surprised if I told him that, as my mask was on, even for him.

Like typical siblings there was a lot of fighting and teasing in our relationship. The bad thing about being the youngest is your siblings know what scares you. Sometimes they use it against you, but it isn’t done with malice. It’s just a big brother or sister thing. One such incident involved my brother forcing me to watch a movie about man-eating spiders. I don’t remember the name of the movie, but I do remember being petrified with fear. But I didn’t show it, nor did I tell him how scared I was. But I checked under my bed every night for at least the next five years, even though I knew the difference between a movie and reality. Still, sleeping was only an option if I was sure that there wasn’t a horde of hungry tarantulas just waiting for me to fall asleep. The line between imagination and reality can be so thin.

Watching that movie with my brother was my first clear memory of fear. Arachnophobia is an easy fear to identify. What I didn’t recognize in myself as a child was the fear of being left out, rejected, ostracized. I knew I didn’t fit in. Adults didn’t see it. But children often see what adults miss. Something about me was superficial, and my ability to adapt too chameleonic for them. My brother may have been on the fringe, I, on the other hand, was a social outcast. And ostracism has a cost, even for those of us on the spectrum. You can cope the pain for a while, and try to find ways to foster social acceptance. But being excluded hurts, and after a while you give up, and decide you don’t care anymore. Sometimes that’s good, if you don’t care because you’ve decided you’re awesome just the way you are. But sometimes it can be a sign that you’re about to fall, especially for autistic women. Being an outsider is tough. Having to mask 24/7 is exhausting and can lead to flying face-first into the sticky webs of depression or Autistic burnout. And speaking from experience, escaping those webs takes a lot of effort and perseverance.

Over the years I have developed tool-kits of social skills and self-care routines to support my role in the neurotypical world successfully and protect my mental health. My childhood mask may have been ineffective, but as an adult, after years of observation and mimicry, it was flawless. A lot of those skills I learned from forcing myself to enter the sales industry. As a socially-awkward, painfully self-conscious young woman, this was not an easy road for me. I addressed a lot of my fear and insecurities by flooding them out. Sales teaches social skills like nothing else can. And let’s face it, social skills are useful. But if I could go back in time, I would choose a career more suited to my personality. Like writer, editor, artist, photographer – something that would feed my creative soul and allow me to work on my own. Because not everyone should have to be a team player.

Being in sales can feel two-dimensional. I’ve learned to love it, but I used to be unsure of which parts of my personality was authentically mine, and which parts were picked up from someone else. It’s like being a method actor – after a while you are not sure where the character ends and you begin. It is that lack of self-identity that I saw in myself and many of the people in the Autism community that I engage with online. We are so busy trying to fit into the picture, that we forget that others should make room for us. To give them the opportunity to embrace neurodiversity. To educate them, and to advocate for Autism acceptance. Somewhere along the line we forget that many of the greatest artists, musicians and scientists were on the Autism Spectrum. Our contributions are valued. We are not broken, we don’t need a cure, or to be “fixed.” We can be who we are, we can let go of the fear and anxiety and accept ourselves. No self-doubt required.

My brother mentioned that horrible movie when he called me this week. It has been years since that day, so I didn’t know what to say. Ironically, he said he’s convinced that watching that movie was the moment he became arachnophobic. I never knew. His sheepish explanation was simply “I wanted you to believe your big brother wasn’t afraid of anything.” I guess we are not so different after all.

Emerging From My Cocoon

“Cocoon” by Erwan Priyadi is licensed under CC BY-NC-ND 4.0

For as long as I can remember, my mother has been fascinated with butterflies. She equates them with being free, not having to stay any one place for a long time. I was surprised at this interpretation. For me, butterflies symbolize change and the ability to transform into something new. But I also agree with her, because not only have they transformed from the earth-bound caterpillar, they have learned to fly. It is in this transformation that they are free.

Transformation is hard work. People resist change, and fall back into old habits more often than succeed in their goals. It takes a keen self-awareness, and dedication and understanding of the incremental goals to reach the finish line. It is not uncommon to reach those hard-won goals, only to slide back into old habits and undo all of the blood, sweat and tears it took to reach the finish line in the first place.

Perhaps the problem lies with feeling that we need to transform in the first place. Many approach transformation – take weight loss as an example – to make them more attractive to others. A keen desire for self-improvement should serve your own vision. As soon as you let others in to that vision, you can set yourself up for failure. Your transformation can be tainted by the perception of others, their judgement, their insights. In my experience, it has caused me second-guess myself, lose momentum, or quit entirely.

I have spent my life being a “people-pleaser.” I was raised that way, that other people are more important than me, or my feelings, and image is everything. The ultimate goal was to fit in. To that end, I have chameleon-like social skills. Socially, I see it as my job to raise the spirits of others, to support their objectives, to be a friend even to people who have hurt me. Personally, my friends are utterly amazing. They understand understand and support me. Professionally I am not as successful, and it is the people-pleaser tendency, and the way my brain is hard-wired, that create the biggest obstacles.

Being a people-pleaser is a curse, and doubly so as an Autistic woman. Although it isn’t part of the DSM-5, I identify as a woman with Asperger’s Syndrome – or Aspie – for short. I struggle with cognitive empathy and can often misinterpret the intentions of others. I also struggle with a surplus of affective and compassionate empathy. It makes me a natural caregiver, which is good. It also, however, makes me a natural target to my peers professionally – no matter how much someone has wronged me, I still find some way to have compassion for their struggle and make excuses for them.

Like many other people taught to people-please, I hadn’t learned how to say no. Boundaries, as a concept, was unknown to me. So it’s not surprising that, despite approaching 50, I still learning how to be collaborative with my team while employing appropriate boundaries with my peers. Apparently I can appear to be aggressive (something that shocked me) when I assert my needs. I don’t know if that is simply their perception (as formerly I cheerfully did whatever was asked of me,) or if I need assistance in learning how to define my boundaries to my peers (something I thought I was doing in an assertive way already.)

In my mother’s defence, she was raised the same way and I believe she is also on the Spectrum. Perhaps that is why she is so attracted to the butterfly…it symbolizes a freedom she has never has never experienced. Despite her wanderlust, she has almost never travelled. She didn’t marry, she said she couldn’t be pinned down. On the surface, she looks happy, and content. She is kind to everyone, the definition of a lady. But she knows she has always been the odd one out, the black sheep, the outcast. She hoped to save me from that fate by teaching me how to fit in. If anything, her coaching defined that I didn’t.

This year I am going to focus on me. My hopes. My dreams. Developing boundaries in a positive way. And writing. I have always wanted to be a writer. Starting as a small child, I have been fascinated with words, etymology, and writing. I write almost daily, whether it be Facebook, or my personal journal, or assisting with editing a friend’s work. For me writing is not only a creative outlet, it is my art, my masterpiece, my joy. It is like breathing for me.

Writing for the public is less scary than I thought it would be. I started on Facebook, writing posts for closed groups of Autistic adults. The support was phenomenal. It has given me the courage to return to my dream and pursue writing for a living. I am starting this journey by returning to The Prairie Asperian, a blog I started last June, with great enthusiasm. I feverishly wrote the first article, and then promptly abandoned it. It makes no sense, I know. As an Aspie, it can be like Anxiety and Self-Doubt live with me, gaslighting me at every opportunity. I abandoned the blog out of Fear. Like so many opportunities in the past, I abandoned it because “Oh my God, what if I’m rubbish at writing?” It’s no way to live. So now Anxiety and Self-Doubt share a locked cell with Fear…and I have tossed the key aside.

Going forward I will be posting a new blog every week, on Sunday. Some of my posts will be about being an Aspie woman, others will be about me, some may be observations of the process of writing, some may be political, news worthy, or insightful bits as I see it. It may wander a bit, but change is rarely a straight line. I suspect my metamorphosis will be the same way. I’m shedding the cocoon, and the comforting safety it represents, and emerging transformed, brightly-coloured, authentic, free and ready to fly. I hope you, the reader, will join me, and I welcome your thoughts, comments and feedback – please send them to me at theprairieasperian@gmail.com. I will be sure to reply.

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