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..."

From An Autistic; How To Navigate Covid19 as Differently Abled Person Or a Caregiver to Neurodiverse People. Navigating Differences During Crisis.

*I have been asked to write a post to help autistics especially deal with this time period at Home while healthy (other subjects are another post) I was also told that Neurotypical people could also benefit from the post...I can only hope this will help. I will be mostly referencing other posts that I feel should be read which are mostly WAY shorter than mine so yay! (I also tried to make mine shorter so you would have time to read the articles.)*

Changes can be especially hard on Autistics and all the people who have differently wired brains from the majority or differently abled bodies. We even struggle with happy changes. So when a societal change happens and it affects all areas of our lives, we are going to probably experience more meltdowns, behavioural issues, anxiety or executive functioning fails. Even if we are benefiting from certain aspects like online shopping or access to free helps we did not have before.

Many people with developmental disabilities won't fully understand the new rules of society. They don't understand why they can't keep their routine or see their usual friends or supports the same way. I feel for those whom may get fined for not social distancing whom can seem "normal" but don't quite understand the meaning of social distancing. These two articles speak upon the disparity that can happen: Independence versus Dependence by Musings of an Aspie CLICK and Decoding the High Functioning label by Musings of An Aspie CLICK. 

The sheer level of ignorance, even in normal "IEP" or specialized educational expectations for those whom are Neurodiverse shows our society's unreasonable expectations. I am worried about parents enforcing these on children in isolation. As this article  ( https://musingsofanaspie.com/2014/11/13/unreasonable-goals/ ) states, I, as a 30 plus adult, can not even meet some elementary school programs expectations. As the author comments, I am not against special programming, or aid, but these need to also be coming from reasonable expectations and with guides from those whose brains actually work differently.

What does this have to do with isolation and covid 19 times?

A lot of disabled adults and children ( autism, down syndrome, learning disabled, differently wired, IQ differences, dyspraxics, handicapped, and multiple others whom are different yet not less) are still being expected to live under unreasonable goals. 'Unreasonable' will be different for each person in terms of needs and require contextual support. An example of this would be of a mother who has a special needs child whom pushes them to accomplish the same as their other children and when it happens they state, "The doctors said it will never happen but look what it she/he  did!" As the child is pictured clearly melting down in the background. Or showing a confused look of pride because they did something that made mommy happy but that they would never choose on their own to do...and their emotions are not considered. The mother pushed, the child preformed even if it is a great accomplishment they were not supposed to perform, but inside they feel turmoil that can not be expressed. The injustice they can't give words to. That maybe they did not want to do that, just because they could. Maybe it was not important for them to prove it?

I understand how it is important to push at times, in order to help a child or adult become their best...but then we get into the question, "What is best?" What if your version of physical fitness or learning the list of vocabulary perfectly, or reading at that level, are not in the best interests of the child? What if they do not want to climb that hill? Does that mean they are less motivated or less accomplished? What if they prefer to sit and watch or read? Does that mean that they have less of a life? What if they prefer to run around instead of read? It is important they can learn enough to support their best life and what they can do for basic living, but what then, if they do not want to engage on that level? In this article ,Autistic Soul (CLICK) writes, "Part of my job as the parent of an autistic child is to make his reality as tolerable as possible, and this means showing him how to adapt by working with his sensory issues – like going to the shops when it’s quiet and wearing headphones to block out excess noise. Parents will find that children spend less time in their fantasy worlds when their needs are being met, and this includes their educational needs, but they must be aware that fantasy/escapism may always be an integral part of their child’s life, no matter how old they are. "

That is where covid comes in...these children and adults are still in their homes, abiding by the rules, either by enforcement or coercion or understanding, but they are still differently wired people. They still require different rules within the home, differing perspectives and understanding.  I was shocked that the schools are giving home work worth six hours a day!This would be unreasonable for any home schooler with a few special exceptions. It's not needed yet the schools are asking it. I understand there is a concern children need something to do- but there are MANY ways to have a rich life at home. 

Cynthia deals with an aspect of this on a post on sensory sensitivities in changing seasons: https://musingsofanaspie.com/2014/10/23/changing-seasons-and-sensory-sensitivities/ . This can also be applied to the changing season of Covid and some anxiety, behavioural changes and sensory preferences that could happen to any Neurodiverse child ( again this does not apply to just autism but a lot of diverse people groups.)

Also, just like there is a spoon theory for those with chronic illness, it also applies to those with disabilities: https://musingsofanaspie.com/2014/10/15/conserving-spoons/  I think many "ordinary" people may actually feel that they are not normally abled during this time. It's not the same as being disabled in day to day life, but some may feel some of the same restrictions that disabled people feel daily. This is when the "normal majority" may be able, in some small ways, to understand those of minority to a degree. They are walking in the shoes where culture collides with normal living.

Cynthia wrote HERE about liminal spaces like the current Covid situation; "It’s okay to feel certain and uncertain, often at the same time. Feeling one doesn’t make the other untrue.It’s okay to doubt myself, to feel insecure and crazy at times. Like the anger, fear, sadness and frustration, I can feel those things, move on when I’m ready, come back to them when I have to. It’s okay to not have an answer. There are more unknowns in the universe than there are knowns. See also: the unknown unknown. It’s okay to change. 2500 years ago Heraclitus said, “You could not step twice into the same river” and there’s a reason people still quote him. We are constantly changing, like it or not, accept it or not, realize it or not. It’s okay to ask for validation and it’s also okay if not everyone I share my experience with offers validation. Ultimately, I have to punch my own ticket.

It’s okay to feel like I’m the only one who knows my experience and, at the same time, it’s okay to identify with the experiences of others, even if I don’t share their diagnosis yet or never will. Adapt what is useful applies to more than just kung fu." 

If a "normal" parent needs to tell themselves these facts during this liminal time of Coronovirus, how much more does a child need to hear and FEEL this allowance from their parents? How much more does a neurodiverse adult need to make allowances for themselves or have their families give more understanding?

Where do I get authority to write about this? I am a wounded healer. My so called faults are also my virtues. In native traditions, the wounded healers were those who had been through something and survived, and then in turn brought understanding and solace to others. They have faced the challenges where the wind blows the hardest and yet their roots run deep. Their strength is in the difficulties they have learned ways around or acceptance in living those differences out. I have been deeply wounded by experiences. I have also healed some of these wounds. It is a journey. I am autistic. I am not ashamed of who I am but have had to face shame before and will again. I have multiple disabilities but I also have multiple abilities. I see the world differently. My children also have differing brain wiring, abilities and disabilities.

I read this post https://www.learnfromautistics.com/autism-interview-121-autistic-soul-on-late-diagnosis-fantasy-and-autistic-identity/ and for a moment I wondered if I accidentally wrote it in my sleep! I could have almost written it word for word. Which tells me that my experiences are not just mine alone. Some may be particular to me, but the larger lessons I have slowly learned, can perhaps help others? The numerous articles I have consumed and made part of me, can now be helpful to those who do not search for such things, but need the alternative perspectives to understand the differently abled around them. If you have such people in your life, please read or mark the short articles for later that I have referenced here. They may just help you during this time too.

*If possible get together with a few safe friends whom are healthy. Just wash. Human connection in person is healthy for your child too.

Song Choice: Life- Our Lady Peace "Oh life is waiting for you. It's all messed up but we're alive."

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!)