An Analogy of My Experience in the Autism Community for Political Movements. Rhetoric - is it Justice? Is it Inclusion? "Social Justice" and the Context of Intent.

"There does come a point (when a seeker) has so much information- we have read so many books and heard so many opinions- that we have to turn away from more knowledge and sift through what we have gathered. Away from the opinions and judgements of others, in a place where we feel safe and at ease, we need to examine each idea, belief and practice and measure it against our own soul. Those that resonate and feel right we keep and synthesize into our belief system. Those that do not we respectfully put away from us. Not everything is for everybody. We all have our own unique path. It is up to us to find it." Barbara Moore

I have been nurturing my path. This is a bit of context to why I do not hop on many trends, social justice movements, or get involved with current rhetoric. That is not to say that some of these things will not be noble and true for others. We each must weigh our knowledge against our experiences, contexts and souls.   

Years ago when I got diagnosed with Autism ( Aspergers Syndrome at the time)  I was immersed quickly into a new community. At first it was inclusive and I found forever friends and a place I belonged. The years went by and one day, I found my blog being unfollowed by many Autistics. It was only recently that I found out that the main reason was because I still often used the terms I was diagnosed with.  "Aspergers Syndrome" and "Aspie." I tried to use Autistic more often but "Aspie" had become a term of endearment to myself and my son who had grown up with it as a nickname since he was a toddler. As a teen he still loved it. 

My friend Sam addresses this travesty in THIS (CLICK) post;
"I have been rejected as a speaker at some autistic-run conferences, even as I had stronger credentials and proposals than the other speakers, based again on the name of my book. (I don’t mind anymore, there are many other conferences. Just a sad fact.) Several autistic advocates have been forced or bullied to change the name of their website, company, or community social media page because it contained the word Asperger(s) or Aspie or some other word that implied , even made up words! Some well-meaning autistic individuals (or Aspies) have turned away from helping others because of the continual debating, shaming, and anger over the name they call themselves. Others have left a community that they were led to believe was built on support and inclusion."

In the last five years, I have been corrected, as an autistic, for not using the right terms for MYSELF like a capital or following with “person“ after autistic. I was challenged BY other Autistics for not talking about neurodiversity or ableism properly. I was told I was ableist a few times, Me- who struggles being capable on a daily level in many ways due to executive functioning and sensory issues! Not only was this hurtful but it didn't feel like the inclusive place I originally joined. Other times it was by well meaning "advocates" or parents of Autistics who were not autistic themselves but knew all the autistic jargon and were “advocating” *for* me and *AT* me. They made me feel confused.

There was even division of the “ scale of autism” where mostly non autistics, parents and “educators” judged the verbal and non verbal and put them in the categories of “high functioning” and “low functioning." Luckily, there were articles written on that proving that low functioning in one circumstance like a non verbal confined to a wheel chair was high functioning in another (when they used their device to write epic stories.) Or on a simpler level - when a person can be both high functioning and low functioning on the same day and it renders it moot. CLICK HERE for a quick article on the topic (the best I've read. A MUST for anyone advocating for Autism.) I don’t think it’s the actual experience to be so literally black or white about it in both autism or skin colour or any other difference. Because on the scale, in their own context, each person has different treatment. Many experience trauma in different ways. Some also experience love on different levels. 

I was “educated” by some (and self educated quickly there after) on the jargon. I tried to use the "correct terms" often for a few years. I fought hard. I called myself an advocate. I was immersed in the jargon and even expected friends and family to use it with the misplaced idea that the correct dialogue was what made them truly love, understand and respect me. But then I realized that the INTENT of words is completely separate from the "appropriate" words. Many words that are used for social justice as "noble" or in place of "dubious history" are also monetized. 

As Sam writes HERE (CLICK for the amazing full article): "For the record, DSM-V, the ‘Physicians Bible’ that created the ‘newer’ autism spectrum diagnosis, is largely backed by special interest groups with financial gain at heart, particularly pharmaceutical and health insurance companies, who are known for their greed and ill treatment of citizens and have victimize millions. The diagnosis criteria of Aspergers transitioning to the umbrella spectrum disorder was not changed for pure-at-heart reasons. It was changed primarily to assist in filling the deep-pocketed big businesses. Many word origins are rooted in tainted soil. In addition, Dr. Asperger is partially credited for laying the foundation for ‘autism’ conditions." (In the article she also addresses Dr. Aspergers "Nazi connections." I have found this particular accusation being thrown around in other places casually for anyone who is in disagreement with radical leftists. When you dig deeper in research done with neutrality or find the truth between both sides, often (sometimes it is valid) what is found is speculation at best and word twisting for an agenda at worst.)

A couple years into my Autism / Aspergers journey, I learned that the widely funded and accepted group “ autism speaks” was actually quite damaging to most autistics in the name of helping and tolerance. Many autistics who could verbalize in writing wrote against it. Often parents of autistics supported it. There were numerous reasons I felt uncomfortable with the motives and portrayals of autistic people from the organization that was supposed to be speaking FOR us. Phrases like “Autistics matter” just brought home the narrative to me that, “Wait did we not matter before?” I knew my wiring had caused some issues around reciprocity and love. But constantly telling me phrases like that made me feel LESS like I belonged. People jumped on the bandwagon because they thought it was helping or that they were nobly on the “right side of history.” Articles citing vaccinations as causing autism and fear mongering were passed on. Which made myself and my children feel like a disease to be eradicated. Articles celebrating ABA therapy (which some autistics stand behind but many found abusive) were tried by loving parents because it sounded like the right thing to do. 

At that stage I definitely did not want to be autistic. Why would I want to be or celebrate my differences, when the very people who were supposed to be "speaking up for me"  were telling me how different I was and re enforcing my wounds and the history of autism at me all the time even if it wasn’t ALL my exact experience?  Had I not been loved solely because of autism? That dialogue got in my head and made me feel even more of a minority. I admit to a darker stage, when for awhile I felt like a bit of a martyr. Some of these are a legitimate phases of learning to live with being a minority. I knew that I had some instances of judgement or cruelty based on my differences (all prejudices and cruelty are clearly wrong) but I never thought of these mindsets as a generalization world wide. That would have been a dangerous thought pattern to have.

Did I have misunderstandings based on my brain wiring? All the time. Was I not loved due to autism? Honestly, yes, sometimes. Did I encounter some blatant discrimination? Yes. A few times, especially in medical situations. One particular person set me into months long depression at the accusations she geared towards me. My husband was appalled at the treatment. I cried for three hours straight after. That was just one degrading time of many.

On the other side of the coin, over the years I found a few select medical practitioners who treated me differently in a good way. They took into account my differences under stress, anxiety and sensory and chose to work with me. It was imperative that they did not treat me as equal but unique. Yet, they also needed to give me equal respect as a human being.

I can see where people can easily generalize whole institutions based on experiences or a few bad experiences of their friends. I honestly have a problem with the nursing profession more than I should. In some cases it was justified. There are practices that need to change. For my part, I had to own my generalizations and engage in cognitive behavioural therapy to recognize that all nurses are not bad or discriminatory. I had to learn (and still get setbacks) that the system is not all flawed. I still have a problem with a lot of it and high anxiety with new nurses. I still would like to see some changes. Most of my experiences have been negative, however the positive is becoming more prominent the more I find allies context to context. I’m learning there will always be good with the bad...it can’t all be generalized and judged. 

Maybe “Autism speaks“ started out with good intentions too but society took it and over time it became widely damaging in the name of tolerance? I actually can't answer that question as I stopped engaging in conversations about it. I do know a few autistics who thought it did some good. They are in the minority but whom am I to judge their positive experience?

I was highly against “autism speaks" and spoke out against it with many other autistics over the years. I became confused when I learned that there were a few autistics who were verbal and writing online who were FOR autism speaks and some like John Elder even spoke for them. On forums (before Instagram) I was shocked to find that there were actually autistics being against autistics in the name of advocacy fighting over the true or noble way to advocate for change. I had one autistic girl target and bully me for having a family and more than one child. I had to block her from my email. 

Frankly? I got tired. Not only did I have a family to raise but I was also dealing with chronically low blood levels (ferritin and hemoglobin), autoimmune disease and my own limitations. I just wanted to be me. 

I heard idealizations of representation on the media and in shows. But when I actually thought about it personally, I didn’t want a world where autistics were represented in every movie or the leading role more often, or talked as much about neurotypicals. That wasn't a reality. We are a minority and that would be weird. I realized I didn’t want full equality for equality sake. I wanted full humanity. Would more representation help? I found at times, it hindered when done improperly. I realized equal rights was not often equal. Some aspects reminded me of communism (which is a utopian ideal but anyone who has studied history knows that Stalin caused more deaths than Hitler and communism perpetuates it's own violence. Read Gulag Archipelago for more. Especially if you are a fan of Marxist philosophy.) 

The very people who need more rights in the first place end up having their rights ignored because they are different. Because they do require a few different approaches due to their own contexts, histories, tolerances, languages, styles, different economic stats, disease or addiction, DNA or co conditions, lifestyle traits etc. Unfortunately, we can not all be equal in everything. We have glorious differences to be celebrated and wonderful similarities to focus on. We can help each other where we are at odds. I realized I actually never wanted equality in treatment but equality as a human being whom is both unique and common. 

Ultimately I wanted and want to be treated as a saying in the autism community goes;
“Different NOT less.” 
Never less. But I definitely want to acknowledge the beauty and hardship of differences. 

An example: If I was treated the same in a sensory environment I would fail. If I was held up to a normally wired (neurotypical) person I would fail. In my journey, I had to learn to accept the terrible abuse and mental hospital mistakes in the past, as part of the cultural PAST. It did not mean I supported or thought that treatment was ok. It did not mean that sometimes those travesties are not still committed. But by not erasing history and the previous times, there were reminders and lessons. 

A lot of my journey through autism advocacy and my experiences with the health care institution is eerily akin to what is happening now and with the police narrative. This was a huge dose of needed perspective. 

For me, it came down to owning what I can change personally. I teach my children to never use autism/ aspergers/ disability/ illness/ difference as excuses but as an explanations. There is a key difference there. It is empowering. And hopefully a bridge or mode to understanding. 

My biggest lesson was self acceptance. I WAS/AM autistic. Yes, it often means I am the minority for processing and communication in a group of people. Sometimes this is obvious and at other times invisible. Sometimes invisibility made it worse and I almost wished I “showed“ more or could “mask” less. Other times invisibility made it better, but then I’d be angry that was the case on behalf of others who couldn’t be that way, or the parts of myself that became sick from masking. Both were terrible in different ways. On the flip side, sometimes it was a boon to be different. It gave me advantages. I’d be silly to think it wasn’t an asset too at times to be how I was. 

So all this lead up to this moment in time. This is my context and story. This is why I decided that I didn’t want to be called an advocate for autism or anything else. Often advocacy starts out with love and nobility but easily gets lost in it's own rhetoric and languages and creates new problems or forgets WHY it is doing what it is. Sometimes in the name of loving people it forgets the actual case by case person TO love. It’s easy to get lost in proper terms that seem to be noble or about love and forget the very flawed people who have stood by us and love us. I’m not saying the abusive, discriminatory language should go unsanctioned. I'm also not saying that I will not "advocate" on behalf of those I love or myself. To me it is reminiscent of when I stopped using the term "Christian." It was tied up in too many opposing belief systems, insinuations, movements, and judgements. I couldn't use it anymore even if some of my friends felt it was the right term for them. I could respect that. I ask them to respect my decision.

I know movements can also be crucial and there is a time and place for everything. I definitely played all parts in my own autism journey and maybe I will again in the future depending on circumstance and context. Maybe each one was legitimate? Some of it can easily be boiled down to ages and stages. But in my context now? I’m more wary.

I prefer now to work my social change person to person, telling stories, sharing others stories. Sometimes I send things in a moment of passion or thinking and mistakenly think people are in the same context as me even though, through these experiences, I’ve learned they are often not. There’s a part of me that forgets. I’m also human and make mistakes. I can rarely articulate what I want except  in writing or music. I still use music the most to communicate whom I am or what I want or my feelings to my children and husband because my writing is still misinterpreted. Often I don’t have words or say the wrong thing or assume someone will understand. I prefer to listen to both sides. I do take a stance but that stance is often not what I portray or what people know. It takes deep thoughtful meditation to get there and I can’t explain it ( also how I feel about beliefs.) 

I worry that the words we use actually make the issues worse. When “white Privilege “ is constantly talked about or “ white supremacist's " it becomes even MORE of a problem. It does not mean there is not racism or that all people have some form of privilege. There is a difference between actual racism and the belief of "systemic racism". I have been educated on both. I find that there is much that needs more discussion and research that is not from a biased political scheme. Telling people who don’t use the proper terms that they are ablest, racist, anti whatever or asking to “educate” them is also a form of bullying. How dare we tell other people what to call themselves? How dare we ask people to constantly remember all the proper terms? It goes both ways. In the end, many of the terms are a socially constructed form of cultural appropriateness. Do we need to change some words? Yes. Often the reason why we change words are not as noble as we think. Intent of the word is more important than the word itself. Context is everything. Sure, if in a loving relationship, there is a time and place to ask for certain terms or to ask for certain words to be left out of the equation. Love conquers all.

I personally believe diffusing, focusing on statements such as: “Here is what love looks like" "This is a story of love" "This is an example of  WHY you matter" or "Look at this person who thrives and are just like YOU!” Empowering speech and people instead of using speech that victimizes and martyrs. I hated being victimized in the autism rhetoric yet some organizations still thrive and are being applauded by many today who do just that. Part of me has to be ok with the good parts they do and not see it as completely polarized. Many other advocacy groups for LGBTQ to race to ableism are getting lost in their own language insistence and policing. It’s sad because what they are trying to achieve in most cases is noble and true. Judgements, bullying, racism, hate, policing loved ones and the silencing culture is not ok. It’s never ok. Even in the name of “justice” or “educating.” 

I’ve been burned too recently by advocacy in the name of tolerance to join up with any. I see too many patterns that I’ve lived through. I do believe in kindness, inclusion, love, true justice based case to case, merit (which has also become a dirty word), grace, patience... 

I do have a huge heart for minorities. For making the world better. For peace and equality of humanity. But not equality overall. From my perspective and experiences, that ends up being unjust and unequal. Recognizing differences, celebrating them when possible, working on owning our life stories and improving where we can and helping those who cannot help themselves is a credo I can support. I believe in living our best lives, not out of guilt or shame for differences, but out of celebration.

Sometimes the loudest voices actually aren’t often the kindest. They are the meanest or hurt people who are hiding behind rhetoric to push what may seem noble but cruelty can mask as kindness. Kindness takes the conversations, the time, the respect, the heart, and an aspect of home. Home is a place where there are boundaries like a door to be closed or opened. A home is place where safety should be offered to all who enter with true intent. Anyone, no matter their differences, can be treated with respect. They may challenge or disagree inside the home but a true home offers an ability to have fair treatment. Which doesn’t mean each child will get the exact same room but a room that expresses both their differences as people (and celebrates them!) and gives the similarities of being human also expressed in their rooms. Home provides shelter to grow. It provides a place to earn merit and learn how to be decent. But it’s also a place to activate grace when the fallibility of being human kicks in.

Kindness begins in the home. It ripples outward. Those whom are placed directly in our paths should have an aspect of it given to them from us and vice versa. If we put an ideal and rhetoric before people we put issues before relationships. It doesn’t mean the issues don’t matter but it does mean that we begin to see heart and hearth. Home is a place where differences matter because they do. We are not all the same. My son with freckles and moles needs extra attention in the heat/sunshine. My daughter with hyper flexibility has to attend physiotherapy. I can’t cook or drive in most places. It would be a travesty and injustice to treat our very human differences as either wrong or put them all on the same level. We will have different needs at different times. Contextual stories help erase hate. And when there are times when we are threatened by more - in an ideological home- we can lock the doors and invite in those who will respect humanity at all levels even if the conversation may hold nuances of difference.

This is my personal context. It’s my story and my opinions. This is my freedom of speech from living in a country that still allows for the expression of all. That matters. That is being threatened in seemingly noble ways but we need to look at all we will lose- especially for those we are fighting FOR.

I’m going to be fallible. I’m going to be right at times too. The new silencing culture that bans books, tears down statues, cancels talk shows based on a long ago transgression, holds mistakes from the past as the current present, polices languages etc.all in the name of making things "better" is forgetting the crucial lessons we learn about the good and the bad of history. There are ways to honour the good while taking lessons from the bad. An example would be to either move the statue to a museum acknowledging the part it played in history with a write up of the benefits and the terrible. Or to erect a new statue next to it celebrating the very aspect that was unsupported in the past. Re writing history the way we wish it could be, is a travesty. Re writing our future starts now.

I’m going to be both confident in my stances and suffer low self esteem sometimes. I am going to both live with misery and joy. And that makes me human. That makes me alive. I refuse to be policed by friends and family. That is my personal right as it should be for all. Challenges in context and with kindness are entirely different matters. I don't love conflict, but I’ll dive into tough conversations. I will apologize for hurt caused if I see it or if it is asked of me. I will also try my best to live in integrity and kindness. I always felt like an alien and still often do, but I know I’m also human ... And that’s where we are the same and what I try to focus on while still telling my story and celebrating and respecting our differences. 

I actually felt Sam expressed this better than I could accurately;

Post Edit: My husband suggested I make it clear that I believe in equal rights of humanity which is different from treating everyone the same. He said people may think I am against equality but see, those are two very different concepts. Emotions and hype can cause the lack of distinction. I thought it was clear so I urge you to re read my words if it is not.

Song Choice: Mind is A Prison- Alec Benjamin  "...Then I tied up my linen with five strips of ribbon I found. Scaled the side of the building. I ran to the hills till they found me. And they put me back in my cell. All by myself, alone with my thoughts again. I guess my mind is a prison and I'm never gonna get out
So they tranquilized me, analyzed me, threw me back in my cage.Then they tied me to an IV, told me I was insane. I'm a prisoner, a visitor inside of my brain. And no matter what I do, they try to keep me in chains Sometimes I think too much, yeah, I get so caught up I'm always stuck in my head I wish I could escape, I tried to yesterday Took all the sheets off my bed...Said even if it's true, no matter what I do. I'm never gonna escapeI won't give up on hope, secure another rope And try for another day..."

Natural Health Brings Dignity Back to Women’s Healthcare.

(I'm using pictures from this Halloween to illustrate this post as I feel it oddly fits.)

"You could never know what it's like. Your blood like winter freezes just like ice, And there's a cold lonely light that shines from you, You'll wind up like the wreck you hide behind that mask you use."- Bernie Taupin and Elton John lyrics.

I wish that PCOS-A New Diagnosis sounded as cool as Star Wars- A New Hope. Sadly my title does not beg the reader to ask for a prequel or sequel. But if I were to have a prequel to diagnosis, it would begin with an obsession with wanting to have another baby. To be exact it was almost a 13 year old obsession (since the birth of my last child) culminating in two years of deep depression and inability  to move onward. Finally, my husband and I decided to get started (for the fourth time in a decade) on the process which included an expensive procedure we had already saved up three times in the past for. This time was different though, because I had already crossed over the dreaded age of 34 into US standards of geriatric pregnancy. What a frightening term! (I found out later in Canada due to different populations, health care and stats, new doctors consider the age of 40 geriatric pregnancy but still! The term needs to change.) Testing my fertility and his was crucial.

I wish I could pretend that how women are treated in the medical system is all in my head. Especially when it comes to hormonal, cyclical issues, but my current blood work confirms, after years of complaints and being mostly turned down, that I was a legitimate case of needing help. Most of the time I was told I just had anxiety or that it was pointless to get tests. I was beginning to seriously doubt myself. I honestly began wondering if it truly was all made up. My resulting depression stemmed from feeling helpless, doubting my own intuition and gut, which led to me questioning if I even knew myself...an attribute I am proficient at otherwise.

I thought I had PCOS years ago but could never get a diagnosis....but for the new symptoms of high testosterone...Signs were everywhere. For instance, two years ago I finally had enough of the embarrassing hair growth on my chin and upper mouth, belly and feet. My husband thought the amount of time I spent plucking each day was ridiculous. Plus if I wanted to be hair free I also had to shave every single day. The upkeep was exhausting. So I saved and went to Electrolysis as part of my self care regime. She became a friend, someone I still look forward to seeing each month. A year into the treatment she was baffled that I was having new growth. She said it kind of reminded her of her Trans clients before the hormones evened things out. She suggested testing hormones. I told her they had tested a few basic ones and said I was fine.

My hair dresser often remarked upon my odd hair loss and thinning out which was ironic because the rest of my body hair loved to grow! But the hair I actually wanted on my head, brows and eyelashes rapidly thinned out. We thought it was just from low ferritin. Often my weight gain was blamed on lack of restraint by doctors. I was accused by a couple Dr's. that I was lying about not consuming sugar and eating mostly Paleo. Each appointment I was told to work out for 45 minutes despite insanely low iron. I was already doing thirty! It was insinuated that I must be cheating regularly or that I was lying about my treadmill time. I began to wonder why I could not get it right? What was the point? I would switch up my food choices, research different lifestyles of eating...sometimes lose 15 pounds only to gain it all back. I had a permanent 30 pounds more after my third child I generally fluctuated around.

"My voice drowned out in the thunder. But I won't cry, and I won't start to crumble whenever they try to shut me or cut me down."- Speechless lyrics Naomi Scott

The worst part was the anger. Two and a half years ago I noticed a switch in myself. Irritation and depression took turns being my primary emotions. No matter what meditation, positive thinking application, cognitive therapy technique or gratitude practice I tried, I still was regularly testy. Perhaps these practices enhanced my life and kept a steady balance to it all? Deep down I questioned, Was I becoming a monster? What was wrong with me? Maybe I was developing a new mental health issue? Who was that girl I heard snapping at the littlest annoyance?

"And did you think this fool could never win? Well look at me, I'm a-coming back again. I got a taste of love in a simple way. And if you need to know while I'm still standing, you just fade away..."- Bernie Taupin and Elton John lyrics.

There were other terrible symptoms ranging from pain, to loss to enlargement of my thyroid to thyroid nodules, to low iron to... the list goes on. I went to a few different doctors. Some did test my hormones. Five years ago my thyroid nodule was discovered which enabled some hormonal blood work. Most results were borderline or fine.

When I decided I may want to become pregnant, everything changed. While I am happy for women who need fertility support that they are treated this way, I am enraged that it took this for me to get a proper diagnosis. Shouldn't hormones be checked regularly when a woman comes in with complaints that can not be diagnosed?

"I won't be silenced. You can't keep my quiet. Won't tremble when you try it. All I know is I won't go speechless... Don't you underestimate me. Cuz you know I won't go speechless...Stay in your place better seen and not heard, well now that story is ending!...So C'mon and try to shut me and cut me down. I won't be silent."- Naomi Scott Speechless lyrics.

Also, I found out that testing blood on certain days of the cycle and times was CRUCIAL for accurate results. Most of the time the Doctors told me that would not matter. Suddenly, when it came to pregnancy it did. That was when I was flagged for high testosterone (which explained the switch in myself 2.5 years ago.) I was also flagged for low cortisol, lower thyroid, slightly lower progesterone, low ferritin again ... and the tests are still happening. How did this happen? The immediate diagnosis was PCOS. Addison's and other issues are pending confirmation.

"Don't you know I'm still standing better than I ever did? Looking like a true survivor, feeling like a little kid. I'm still standing after all this time. Picking up the pieces of my life without you on my mind."- Bernie Taupin and Elton John lyrics.

Funny enough, I also had to get a Naturopath to order the tests through a family doctor. Even when she initially consulted with me she opened with, "It is unlikely that you will have PCOS, which affect fertility as you do not present as the type, most are very heavy women who are obviously hairy and present a bit like a man, but we will test you anyways." When the results were in she remarked, "Wow, you're blood work shows the standard fluctuation in hormones for a PCOS woman. You will need at least three months treatment to get yourself in order before you can get pregnant. In pregnancy you will have to monitored and we will give you some natural progesterone which should help you retain pregnancy and the rest of the issues we can manage through supplements."

Later she confided, "Honestly, your obsession with wanting a baby may have stemmed from your body needing balance. A pregnancy if retained at this point would help you a lot. Your mind knew that. It's like women who crave chocolate who actually are magnesium deficient. As soon as their body has sufficient magnesium they are no longer craving chocolate. If we balance out your hormones you may not have a baby craving, but if you still desire to be pregnant, that may carry you through to menopause without the debilitating symptoms you are having now. That is not always the case but it can often happen if a healthy pregnancy and labour is achieved. "

If this part of the story was the riveting sequel, it would finally find me at a place where my life was given back as MINE to live. Walking out of her office, my self confidence, and my trust in my inner gut was restored. My intuition and inner knowledge of self was confirmed. My confusion cleared up. Despite having all the symptoms still I knew why and that information allowed me to make informed daily decisions. My creativity re surfaced two days after diagnosis. Long term goals were thought out more clearly. My baby obsession became a light, healthy interest. I was even able to put that decision easily on the back burner until I could see if the me, that would be brought back into myself from treatment, would even wish for a child.

Luckily because a pregnancy is still an option I am not being put on birth control pills which are the standard for treatment and often only band aid bigger issues and make things worse further down the road. My naturopath put me on natural androgen blockers as well as other supports. I checked with the one other Dr. I trust to give an opinion on the matter. He read the ingredients and said that some of them were given to men when they have enlarged prostates due to over aggressive testosterone and it should do the trick at lowering mine. Plus, the other ingredients naturally worked for balancing out other hormones. When the metabolic process is off in a body, many disruptions happen at a molecular level to cause chaos. My body can not regulate with a simple diet and positive thinking. Yes, both these attributes are large factors in chronic illness, but they are not the only way to manage.

"Now that story is ending..."- Naomi Scott Speechless

My Naturopathic Doctor also went over backlogged records of my blood-work. She would occasionally point out one and say, “Oh that November you must have felt like you were dying. That particular concoction of hormones make women feel they are slowly dying from the inside. Most doctors say it’s low normal for thyroid but it’s actually a slow functioning thyroid that when combined with other body systems creates a certain set of issues. It must have been heartbreaking to be told you were fine when you felt that way.” Or “This pattern here explains your constant low ferritin. Often that can happen with certain women in PCOS. Each manifestation is different but with heavy cycles and also your co diagnosis of Lyme and Celiac which often also go together- fits the picture.” And “ You must feel you are collecting diagnosis but don’t be alarmed as they all can often fit together. Unfortunately, after years of no support , the body can spiral into other conditions. Even though you have chronic/lifetime diagnosis we can actually get most symptoms on track and prevent other things you would be at risk for with PCOS like high blood pressure, certain cancers etc. by proper treatment.”

Last Autumn, I actually paid to take an in depth course on PCOS. The one Dr. that was actually on my team told me to look into it. Unfortunately, my blood work was done on the wrong day and did not show anything. It is crucial to be done around 8 am, preferably after fasting on days 18-21 of the cycle. Also to have fasting glucose done to rule out other conditions. *(There ARE different days for bloodwork. See Below)

"Once I never could hope to win. You starting down the road leaving me again. The threats you made were meant to cut me down. And if our love was just a circus you'd be a clown by now."- Bernie Taupin and Elton John lyrics

I was told time and time again that I did not "present" as a "typical PCOS" patient. Multiple Doctors told me I wouldn't have it because I was "too young," "too pretty," "too feminine," "not hairy enough" or "not overweight enough." All these statements sound flattering but they were condescending judgements. I did not look hairy because I had electrolysis and shaved every day! I present younger despite wrinkles and aging due to being an Aspie/ Autistic. I looked passable because I know how to put on make up and wear falsies. I seem feminine because my voice is higher pitched anyway so when it lowered, due to testosterone, it didn't seem significant. I am thirty pounds over what I should be for what I eat, my exercise and my lifestyle. It is perpetually aggravating to be SO restricted and not lose or have anything to show for it!

Honestly, I have let myself go to eat whatever the last month. In the last two weeks I have become slightly pleasantly plump as my daughter giggled when I asked her if I gained. Ha I trust my children to tell me the truth . For the first time I have allowed myself to be. It bothers me sometimes but in general, I feel awesome so that has to count for something! I have had ENOUGH of the assumptions of what it means to be a woman. I have had enough of the assumptions of what a capable, strong, beautiful woman should be like. Or what a sick woman should look like. It goes both ways. I will not conform to that standard. I never fit and never will. But just because I like to take care of myself and am aware of how I present, does NOT mean that my treatment should be ignored or I should be disregarded.

"Here comes a wave meant to wash me away, a tide that is taking me under. Swallowed with sand left with nothing to say, my voice drowned out in the thunder...written in stone, every rule, every word, centuries old and unbending. Stay in your place better seen and not heard but now that story is unending. Try to lock me in this cage - I won't just lay me down and die. I'll take these broken wings and watch me burn across the sky."- Naomi Scott Speechless lyrics.

If I could make any point with this post- it is for women to keep pushing, trust their gut, and it's sad to say, but if you are of the age when you can have a baby, and can not be taken seriously any other way, maybe consider it and go in for fertility issues to be checked. It sucks that it may come down to that for some women. Women are left in Menopause to deal with issues, when many of the symptoms could be supported. Just because it is natural process does not mean it does nor require different supplements, supports and strategies to re balance the body! Women's health care still has a LONG way to go. The injustices of how women are treated today (SEE THIS POST) should not still be happening in this century. Don't live unspoken! Let your echo never be silenced!

"I can't be broken. NO I won't live unspoken."- Naomi Scott Speechless lyrics.

PCOS is not a fun diagnosis. It's not curable in a standard way, though it can go into remission. It does higher the risks for some scary conditions later down the road. Yet, I’m happy with the diagnosis for one simple reason- I can actually trust my own process. My symptoms can be explained even if the explanation sucks sometimes. I can suffer the how better knowing the why. This is a game changer. The missing puzzle piece I have consciously and subconsciously been chasing for years is finally on the board with the bloodwork confirming high testosterone. It’s a new hopeful beginning.

Two weeks into treatment and my family expressed that I was a way nicer person. If I forget a pill, I feel it that day. Spearmint tea twice a day also helps lower testosterone and balance out androgen's. I feel back in a semi state of control over myself which induces calm. My creativity came back after a few days of diagnosis. Suddenly my brain didn't have to fight so hard to have me hear that there was a problem! My life was already accidentally magical, and I was grateful for it everyday, but often I still had a layer of unexplained irritation covering it. After diagnosis, my symptoms did not change, but I finally was able to explain my system to itself.

"Watch me burn across the sky!"- Naomi Scott Speechless.

I don't know what the future holds. Maybe I will also have Addison's, a concern for low cortisol like mine, or any other myriad condition that is caused by hormone disruption. Maybe my ultrasound will pick up ANOTHER underlying cause? Maybe the pills will only work for a little bit. In a few years I could switch back to Estrogen or Progesterone dominance, as it is speculated that is what happened nearly a decade ago. That can happen in PCOS. The body is a strange and complex entity. Life is complicated with each new diagnosis, but it can also be simplified...especially if the person was already suffering without knowing why. All I know is that I will not go speechless on these issues. These broken wings enable me to burn across the sky. I won't be silent about the struggles specific to women and the discrimination and injustice that can happen.

"You know I'm still standing better than I ever did. Looking like a true survivor, feeling like a little kid. And I'm still standing after all this time. Picking up the pieces of my life without you on my mind I'm still standing (Yeah yeah yeah). I'm still standing."- Bernie Taupin and Elton John lyrics.

I share this story for women everywhere to not doubt their bodies. Keep fighting. It took me more than ten years to be fully heard. Two of which I was asking every few months for answers! Depression is caused often by not knowing our bodies or why we are the way we are. Not everything should be blamed on anxiety or typical women's bodies....like we are just supposed to be messed up because we have a different hormonal concoction! We shouldn't just accept birth control as the only treatment. We shouldn't have to deal with insane periods or menopausal issues...just as we should not have to put up with sub standard care in labour and delivery. Most of our Women's health issues require revision. Find alternatives. It is worth it to pay for a Naturopath if you can save up to afford it. It took me a few different tries to find the right one for me, but it was worth the search. Don't give up on yourself.

I also ask that men, if they are reading this, to revise their opinions on Women's bodies. Especially men in the medical world. The women in your world will thank you for understanding the complex ways in which hormones can affect whom they are and what they do.

"Let the storm in. I can not be broken. No I won't live unspoken. Cuz I know I that I won't go speechless." Naomi Scott Speechless lyrics.

My life is back. I looked back over the last few years and issues that baffled me now make sense. I am finally free of self doubt. I may struggle with general depression on the days that my symptoms win, but the depression that stemmed from doubting self was debilitating. I am so relieved that is gone from my life for now.

"I won't be silenced. Though you want to see me tremble when you try it. All I know is I won't go speechless. No I won't go speechless. Cuz I breathe when they try to suffocate me. Don't you underestimate me. Cuz I know that I won't go speechless...I won't be silent. Don't try to keep me quiet."- Naomi Scott Speechless Lyrics.

"Don't you know that I'm still standing better than I ever did? Looking like a true survivor, feeling like a little kid. And I'm still standing after all this time. Picking up the pieces of my life without you on my mind..."- Bernie Taupin and Elton John lyrics

Post Note: Days of the cycle vary for blood work. Overall blood work for hormones are day 18-21. (Practitioners differ on this- it worked for me but some say different days.) However, if Estradiol is the main concern day 3 after a woman's flow is the best. If DHEA is a concern (especially in combination with previous high Testosterone results) than a week before or a week after the first period day is best. Cortisol is best around 8 AM and 4:30 PM on the SAME day. It is also helpful to have ACTH done this way. Research your optimal days and even if it doesn't say it matters, try your best to get tested on the optimal days for optimal results.

This diagnosis was not 'new to me' at all but the confirmation of my concoction of hormones WAS. That was a big deal... I'm still being tested with more blood work and ultrasound ect.

Song Choices: Speechless by Naomi Scott. (Aladdin) And  Taron Egerton 's version of Elton John's  I'm Still Standing

Women's Equalization? Are we the Same or is it Better to be "Different but NOT Less?" Women's Health "Equalization"/ Autonomy and Respect.

"Oh you are a Feminist." I have heard that statement more times than I can count, and it is often accompanied by a tone of derision, from mostly men, yet on the flip side of the coin from strong, fellow women I have heard condescendingly, "You are obviously not enough of a Feminist." Which one am I?

I am what I am, a product of my body, hormones, genetic make up, choices, environment and so much more...

Recently, we had a study in our home and the topic of Women's Rights came up. There was back and forth between the males of the group and the two only females of the group which included myself. I find I am often the female minority in Philosophy groups- a point I am still curious of. Is it religious demographic or is it a larger question of female and male? I don't know. Anyway, at one point in the conversation I became fed up and interrupted with, "It's like what we advocate for in Autistic communities....Autism is DIFFERENT but NOT Less. As Autistics we do NOT want the same opportunities as "normal" people. If you put us in an extreme sensory situation we will not measure up. If we are required to give the proper eye contact and the same socially acceptable behaviour as our peers, we will probably not be given the job. What we need instead is greater understanding that although we may have differences and weaknesses in some areas, we will have strengths equal to or surpassing in others. The same should be said for women in general. While it is true that some women can be stronger than men, in general this is not usually the case. But just because we are not physically stronger, does not meant that we should not have the same freedom to try certain jobs ect.

"Different and not less" is about respect for the individual. It's about autonomy and the ability to choose the life that works for us. It is about the ability to bring our certain skill sets and be acknowledged for them or given the time and patience for us to prove our potential in outside the box ways. It's about defying societal expectations instead of conforming to them, but it's also about trying, in our own way to achieve societal contributions and acceptance. It's that fine line between the Yin and the Yang. And it's more work than just general social acceptance and pushing everyone to achieve the same goals.

In Women's Issues, I am getting frustrated because even though we have made substantial steps toward autonomy, the suppression of our clear differences is being affected during these marches to freedom. While there are exceptions to all things and ways of Being, in general, there ARE biological, physical, chemical, psychological, and physiological, differences between the male and female body. These should be celebrated instead of ignored. Also, they are an important part of health and functioning.

In our day and age we still do not talk about the complications of prolonged menstruation and women's health. Women are starting periods as early as 8 years of age and sometimes bleeding into their fifties. This time of menstruating is longer than anytime in history- especially without the multiple breaks of pregnancy that were part of life before this century (which obviously came with other serious health issues.) While the pill has been toted as the "miracle pill", many women are finding after years of being on BC their health problems come back worse and complications arise from long term use, even if they didn't get the horrid side effects that can accompany birth control. Long term effects like increased blood clots, cancer, early death, infertility, hormone imbalanced conditions, and autoimmune diseases ect. Women's health is under researched and not discussed often enough. Even saying the word "period" is often met uncomfortably from both men and women! Yet, the jokes of male anatomy are often met with snickers from all sides at the very least. Birth and menstruation are essential to human life, both male and female and should be an accepted part of conversation in all circles. Until we get to a point where the women's body is treated as more complex in medical situations and with the respect we deserve, women have a long way to go in "equality." Equality does not mean that our bodies should be given the same amount of time as a male patient's doctors appointment, it means we should be given a longer slot of time to be equal in treatment. Fair is not fair. Equality should mean that menstruation and it's potential health effects should be as researched as male pattern baldness even though the money is not in it.

An example of un-equal treatment would be how women are treated when they have heavy bleeding but refuse Hysterectomy, Ablations or the Pill. See THIS ARTICLE. Our system is Male centric. The female doctors that have dealt with my issues often do not have the same issues I do...I honestly believe most female doctors are in the percentage of women who have experienced light, normal bleeding because they probably wouldn't have had the time or energy to get to that position if they had heavy, iron depleted, menstruation month after month. It IS limiting. One in 5 women experience heavy bleeding or complications from their cycles. It is a pretty hopeless situation for those who do not wish to compromise their body with the effects from birth control or have an Ablation and Hysterectomy.

Personally, I know this to be true because I have also been treated with derision, condemnation and rudeness in multiple medical situations because I refused to go on birth control or to have an ablation. I have been heavily anemic for most of my life and have spent the last decade with a Ferritin ranging from 2-9 ( and never higher than 9.) I have been on birth control once and it made my issues worse and my bleeding lasted for months. After extensive reading, many anecdotal stories and the limited research on the long term effects on Women's health, I will never go back on it. That said, I do believe it has a place in society and that for a select few it is the best choice. The doctors are not kind when they realize you will not easily be fixed. It is rare to find a Doctor who advocates for root cause or takes the long term, long hours of digging and care to diagnose the complexity of women's health issues. I have also found women doctors to be especially unkind about this because if the pill worked for them, why wouldn't it work for me? Some of these same women march in Women's Rights rallies which I find slightly ironic. I guess I find acting upon beliefs in the day to day more substantial, although there is a place for marches too, but if we are going to march, we should know the full scope of women's experiences and engage in understanding.

THIS ARTICLE sites, "Recently, Hormones Matter has begun to explore the legalities of the medical informed consent, here and here. With all the adverse effects associated with endometrial ablation, especially the need for hysterectomy later, one must question whether women are informed about those risks. As I have found when investigating this topic, there are few long term studies on endometrial ablation. Many of the articles cited for this post come from paywalled journals that are not readily available to either the patients or the physicians – the costs are prohibitive for both. So it is not clear whether the physicians performing these procedures are aware of the long-term risks associated with ablation. And as one physician suggests, neither the pathologists nor radiologists responsible for diagnosing post ablation pathology are trained to recognize these complications. Without data or access to data and without training, one wonders whether it is even possible to have informed consent for a procedure like ablation." 

Why is it, that in 2019, we still do not have involved informed consent on Women's health procedures? Why is this so under researched? Why are Doctors so prone to slap a "hypochondriac" label or "Anxiety" label on women who are suffering with hormonal issues or bleeding issues that are legitimate and need new cures? Thus far, there are no long term cures for Endometriosis nor for PCOS or Hypothyroidism or many issues that mostly belong to women. We are in an age of scientific discovery and so called "rights" yet we have not even made huge strides in these areas. Or what about the scarily high rates of death and longe term affects in maternal health care? Yes, we have made large strides, and yet most causes of mortality or morbidity are from Doctors mistakes in the Health care system. See THIS, THIS, THIS, THIS and THIS article.

I hear men talk about abortion and the injustice of it and yet I do not hear them talk about the injustice of the rising mortality rate in pregnant women or infant death. Why is that? Every day approximately 830 women die of PREVENTABLE causes of death in childbirth. Until you can talk to me about that issue, I will not listen to arguments of equalization between males and females. Until you can discuss the 4.8 million (as of 2016) females and children being sold into the sex trades and the whopping 85% of women in domestic abuse situations as opposed (to the also sad statistic) of 15% men, you can not talk to me about abortions. 

In my personal birth experiences I had a doula twice to advocate for my rights, and in these situations my rights were still ignored in some regards. My body wasn't treated as my own in my first birth and I suffered severe post partum depression for years after, along with heavy bleeding for 12 weeks and health issues. Nurses were often worse then the doctors. It is a travesty that women are cold to other women and treat these tender issues between life and death as trivial. While birth is an everyday part of life, it is in no way trivial.

Having female genitalia and hormones IS different from having male genitalia and hormones. Equalization would not be fair. We NEED to be treated differently. But that does not mean that we should not have the same amount of opportunities that men have enjoyed in the past. We should have access to our own decisions, and the ability to make a good life, whatever that entails, with personal power.

With my anemia and blood loss every month, I could never hold down a regular job. Other women in my experiences have either understood that because they have been there too, or are generally pretty harsh about it. Are we not all on the same side? Should we not be fighting FOR each other instead of WITH each other? If I choose to stay home and have my husband work, and he is happy to do so, should that not be acceptable? (*If my daughter wants to work and is capable of doing so and her partner wishes to stay home, that should also be a right celebrated.) Am I not still working and still legitimate in the social order of things? If my husband protects me when I am vulnerable and bleeding and can barely get out of bed does that make me weaker or incapable of making my own decisions? Does it mean that he "rules" over me? I am proud that my guy feels compelled to protect me when I am physically vulnerable. FYI that physicality does not mean I am weaker, on the contrary I'd argue it makes me stronger in some aspects to deal with what I do and still BE, but it does mean he has different strengths I rely on during different parts of the month. And I have strengths and protect him in other ways. I want him to open the doors for me. I want to lean on him when I can barely make it to the next room because I am so depleted of oxygen and iron. I want him to advocate for me and stick up for me when the male or female doctors are not listening to me but they will listen to him. It doesn't make up for the injustice of the situation but I'm grateful he is around. And what of the women who do not have a stronger partner or advocate for them (be it male or female?)

When I am pregnant and I choose not to go to war, am I less than a man? If a woman wants to go to war for her country she should. But she is generally in the minority and I think that is ok. If we actually look at the health stats of women in general, we see why that is. Millions of women suffer from minor to major hormone and cyclical or pregnancy/birth related life complications. We ARE at a disadvantage this way. But we also BIRTH life and create in ways that men can't. Men are not less because they do not do this, and we are not less because we can.

Because my health issues are more complex in this female body I am housed in, am I less legitimate? If I am suffering and find myself at the mercy of the medical system to try to find the root cause is it just female hysteria? History says we have made progress, and certainly there have been baby steps, but personal experience along with a majority of anecdotal evidence, has proven we have a long way to go.

I do not want to be equal to a man in body. That's not how I was made. I know a few women who could possibly be equal in the hormonal concoction or perhaps in strength they surpass many men, but in general it is the exception and not the rule, so why are we advocating for this? It will do us a huge disservice. Many middle aged women are stuck between wishing to come off strong to maintain their jobs but also dealing with the hormonal affects of cycles and aging. Before this time men have been the majority in the work place and women have proudly and rightfully found their places, but now we have to ask ourselves, how do we make work places and society more women centric too? Not just females fitting into the male prototype of being able to be constant, instead of a woman who is cyclical and should be proud of her ties to the moon, nature and nurturing? Yes some women are not and that is okay too but for the majority who are - where is our cyclical society? Where are the peer reviewed studies on our long term health affects and hormones? Where are the damaging statistics on many of the archaic procedures and medicines still harming us? Where are the work schedules that allow for our cyclical flexibility?

Anytime this conversation comes up, a man usually brings up the subject of the "de- masculinity" of boys in our culture. While I do believe there are some concerns with the pendulum swinging too far the other way, due to our recent patriarchal past and rightful reactions to this, I still feel the same rule applies to men. I want my boys to be different not less. They can have whatever expression of their lives that they chose. And I wish for them to respect the women in their lives and be aware of cycles, changes and differing health concerns. I also want the women in their lives to respect their different struggles, strengths, health and weaknesses. I am not a man and can not speak for one. However I have and CAN advocate for my husband and boys in many situations. That is what I wish for them to also do for me. We are all human and in that we are equal. Yet, we all have our differences and in this time in history, it is important that we do not ignore these facts, while making crucial steps onward into growth and hopeful change.

Song Choice: Wonder Woman- Kacey Musgraves....I chose this out of a myriad of songs because of this lyric "Don't you know I'm only human? And if I let you down I don't mean to. All I need is a place to land, I don't need a super man to win my lovin' cuz baby I ain't wonder woman." And yes, that is it. WE are the human scope of brilliant diversity...yet we also have distinct challenges in our genetic make up that need to be acknowledged in places of health and the work place. It's complex, it's tricky and it involves the rights of many, but with a case by case approach and societal expressions of different NOT less, it CAN be accomplished. We all can rise to complex life challenges and come out celebrated. ( On a side note Congrats to Kacey for winning the Grammy's Album of the year as it is probably the record I have listened to over and over the most since I bought it the day it came out...YAY!)

Post Edit: I AM grateful for the tests, procedures and birth control we DO have, however in this time of history I think it is reasonable to push for advancements. The realm of Women's Speciality health is still fairly new and we have further to go. Birth Control pills gave us freedom and many countries could still benefit from remedying the lack, however, the side effects and the long term effects need to be more researched and I am SURE there are better alternatives yet to come! For those of us who do not have those options due to family history of blood clots or excessive bleeding or whatever, there should already be ongoing progress into alternatives (Depro Provera alone needs an entire post on it's own about it's dangers and research ect....) Another entire post could be on the comfortability and support during scary tests for women. We could also do better in this department even if it means a few more health care dollars thrown into cheery paint, waiting room art and kinder technicians...I digress because I could go on and on....:) 

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!)