AUTISM INTERVIEW #97 PART 2: KMARIE ON ADVOCACY AND DEVELOPING A POSITIVE AUTISTIC IDENTITY

AUTISM INTERVIEW #97 PART 2: KMARIE ON ADVOCACY AND DEVELOPING A POSITIVE AUTISTIC IDENTITY

This was originally posted here: https://learnfromautistics.com/autism-interview-97-part-2-kmarie-on-advocacy-and-developing-a-positive-autistic-identity/ I want to thank Jenna for asking me to partake in this series. She helped give me back my voice in a way...This was a fun endeavour. Jenna was excellent at letting me add things after the interview, giving interesting questions, and editing my posts for me. I would highly recommend the experience to an Autistics/ Aspies out there! Her blog is an excellent resource.
June 11, 2019

Interviewsadvocacy, autistic identity, Kmarie, parenting

This is the second part in a two-part interview with Kmarie. Kmarie is an autistic wife, mother, and blogger from Canada. Her beautifully written blog details a variety of different life experiences, including (but not limited to) living with Asperger’s, INFJ personality, low ferritin, and chronic illness. Last week Kmarie discussed her relationship with music, the importance of self knowledge, and her struggles with executive functioning and language. This week Kmarie shared advocacy advice for parents who are trying to raise children with positive autistic identities.

What mistakes do you see neurotypical autism advocates make?

Not listening to actual autistics. Yes, we are diverse. Some of us believe in the social model of disability while others the medical model…I am the in-between group that leans more to the SMD but believe in the validity of both to a degree….but our divergence on topics should not stop people from listening to us and gleaning information on how to parent or care give to those with autism. 

I recently read a Psychology Today article that had me enraged me with insinuation that we needed to be eradicated. I have to stay away from the politics of it all because I become locked into more language difficulties when I am upset. But the biggest mistake I see is supporting places that give more voice to the eradication of autism or not listening to those who actually HAVE autism. 

Another mistake is getting bogged down by politics and identity language. I know it is an important part, and for some autistics, it is especially crucial for their healing, but overall, I feel this should be later on the list of importances, and first and foremost, it should be about support. Support, understanding differences, and validating before improving. Most of all, they need to know they are loved for whom they are, not for what they could be. Their souls deserve to know that being accepted is part of their parents’ choice.

What have been the most important factors in helping you develop a positive autistic identity?

I can remember years ago, reading “Aspergirls” by Rudy Simone. That forever changed my life. Her approach was so laid back but relatable. I find my certain concoction of whom I am is helped more within my favourite fantasy books in the YA 9-12 section. Percy Jackson books also helped me see the hero within my learning disabilities. I suppose I am easily positive. Cynthia Kim from ‘Musings of An Aspie’ became a friend, and she wrote “Nerdy, Shy and Socially Inappropriate” which changed my life too. Sam from Everyday Aspergers is also a friend and was a HUGE part of my positive Autistic journey. Finding them was one of the best things that ever happened to me. Before then I was reading mostly “professional” literature…Tony Attwood etc…,but they linked me up with other people on the Spectrum.

Also, seeing autism manifested differently in my children, and their beautiful, insightful souls has also been a huge part of my positive autistic journey. I also need to stay away from autistic blogs that focus on language, identity politics, and hard hitting issues. Not because they are bad…they are needed too and I cheer them on in the background for the most part…but because I start to lose focus of the good things. I also have memory issues and speech problems of my own and have been corrected by others on how I refer to myself. I don’t appreciate that aspect. I try my best, and it will fluctuate. As I am easily positive, I can also easily derail. It is why I stay away from the news. It’s not because I am choosing to be ignorant. I make sure I educate myself in varied ways, and stretch my mind…but it is because I am heavily empathic and easily take on someone else’s anger (Even if it justified and right…It’s not mine…) Being an extreme introvert, I am a hermit on many levels, and I have to protect my space in order to keep my innocence and positivity. Honouring my boundaries and need for space, kindness and tolerance in that regard has helped me have a more positive identity.

What advice do you have for parents trying to raise their children with positive autistic identities?

Respect the sensory. I know many parents cannot take their children out of school, but if there is ANY way that is possible, it is amazing what the home environment can do…if it’s a healthy one. And if not, make the school day shorter, find sensory safe spaces often, make the home magical and healthy to come home to. I was astounded the second year my children were home at the differences in whom they became. Their communication was clearer, they were more confident, they became happy within themselves, less sick, less anxious, less depressed…and all of this was because their sensory was under their control. We decorated their rooms the way that suited their personalities, and we made sure to include sensory items. I wrote a post about creating safe havens that has been helpful for some.

I have written also written posts about Sensory Overload that many parents of Autistic children have found especially helpful. My post about Sensory Overload at Christmas expresses how being Autistic still affects even favourite Holidays that I enjoy thoroughly. I explain Sensory Sickness with the example of one Halloween in our family along with tips and tricks to see the signs of “sensory sickness” early, which is a step up from Sensory Overload. In THIS post, I break down effects that are a part of sensory overload in general Holidays. For example; Odours, Relationships, Outfits, Anxiety, Food Intolerances etc. and I give examples of what that looks like in our family and solutions to some of these issues.  Finally, I wrote about our family’s experience at the zoo, which was a little piece of torture on earth, especially at the time when the children were younger (I still loathe the zoo). Many Autistic children do not have the words or emotions to clarify what is happening in these scenarios. If I am being honest, I didn’t either until I wrote these posts (many of which were written a few years ago, but still apply for any parent who is looking for guidance in these areas). There is also the other rare time of sensory deprivation which I wrote about HERE, although for some Autistics that is more the norm of their sensory experience. For myself, Sensory Deprivation, or what I call my “robot mode,” is rare. 

Another aspect of helping children with autism manage the sensory is diet. However, I do not believe the claims that diets “cure autism.” Often what is happening when people claim their children were “cured from autism” from a dairy-free, gluten-free, sugar-free diet is that they are simply managing the sensory better. We have been on that diet for 5 years now, and what is actually happening is that it takes down a lot of the sensory within (from the gut)…which enables clearer communication at some points and more comfortability. But we are still the same people. We still have our unique way of looking at the world. It’s just that our guts are in less pain and permeability so our nerve pathways are open to us handling a bit more out in the world. What works for one child, may not work for another. But in general, find the sensory that is overwhelming or underwhelming your child and try to remove a lot of it or work around it because then they will have more room to express themselves instead of just trying to cope. Also, if they can’t choke down a food, it is easy to find an alternative or creative way around it. Food is important though in terms of helping them be under less sensory distress. Basic respect is often forgotten and autonomy is not given to children…and children deserve to be part of their own care and to be able to have a say in it. 

Next I would say, read to them beautiful, positive articles from actual autistics. My daughter is reading Aspergirls right now, and she can’t relate to the parts I did, but the parts she can make her light up with happiness. My son loves to hear Musings of an Aspie articles…especially ones that focus on Executive Functioning and understanding how his brain works. We celebrate our autistic identities. I let my children refer to themselves however they want to be referred to. “Aspie” is akin to “dearest” in our home. (Our son was diagnosed at age 4 when Asperger’s syndrome was still in the DSM5. We still use the term even if it has gone out of use in the professional world or not liked by others. In our house, it’s a term of endearment.) I feel it is important, like personality typing, to learn the struggles and benefits of BEING in the world. Being Autistic also fits into that.

 Also, when the children are in a meltdown, give them safety, love, and care. I’ave written about how to deal with meltdowns by other Autistics and included links to similar resources HERE. Know that they are not acting out of spite, but out of pain. Read up on other autistic thoughts on meltdowns. Give them code words for when the world is getting too much or when you are out of the house, and they need to keep their dignity, but leave a situation. 

I also feel that Autism often comes with co-conditions. It is important for caregivers and Autistics themselves to understand the co-conditions too. For example, I have Dyspraxia. Often, most of my frustrations and issues people pick up on are actually Dyspraxic attributes and NOT Autistic. There are many “cousins” of Autism that overlap, and it is important to research all that apply to the child. Autism sometimes will not address the struggles the child may encounter, nor the great differences that require celebration! 

My youngest has multiple learning disabilities and slow processing speed, but he is NOT Autistic. However, my older two are Autistic, and they can accomplish aspects of life which he can not, but he also can work around issues they cannot. My daughter has the co-condition of OCD Anxiety, and my eldest son has Dyslexia along with Autism.

Sometimes, parents mistake seizures for an Autistic trait when it is separate. Physical issues can go along with Autism, but many physical impairments are co-conditions. While it is true that it feels like our family lives at the Dentist, and we DO have weird, odd physical ailments and react to medications differently due to our different brain wiring, some of that can be attributed to the MTHFR gene that can also go along with Autism. Autism is different for each child, and it is important to remember that, as a famous quote says, “If you have met one Autistic child, then you have met ONE Autistic child.” Some will be sensory seeking while other children will try to avoid most sensory. Figure out your child’s preferences and read from other autistics about how to respect their journey!

Also remember that Autistics are not often age conscious. My children generally prefer to play with younger children or discuss with older adults. They often prefer to sit in with the adults, and that is perfectly ok.

To sum up, I would say to concentrate on education from other autistics, support their differences, and celebrate ALL that they are…the struggles, the gifts, and the ordinary…so they know they are worthy of being loved. I was very excited to explore your site as I think you are doing an excellent job of organizing a space for this. It encourages me and gives me hope for the future of my children.

KMarie often selects song lyrics at the end of her posts. Below are her choices for this interview:

You Have More Friends Than You Know – Glee

I hope each Autistic child and adult know that who they are is ok!

“Be brave. Be strong. You are loved. YOU BELONG. Some day soon, you will see, you’re exactly who you’re supposed to be. And you don’t have to go through this on your own. You’re NOT alone. You have more friends than you know. Some who surround you. Some you are destined to meet. You have more love in your life. Don’t let go. Give it time. Take it slow. Those who love you the most may need more time to grow. It’s going to be ok. You have more friends than you know.”- Glee 

“Be who you are. Learn to forgive. It’s not about who you love but how you live.”– Glee

The Wizard and I – Wicked. 

All the songs from Wicked hit my soul during my diagnosis, but these lyrics had me weeping From the Wizard and I “Did that really just happen? Have I actually understood?

"This weird quirk I try to suppress or hide- Is a talent that could help me meet the Wizard? If I make good, so I’ll make good. When I meet the Wizard, Once I prove my worth. And then I meet the Wizard
What I’ve waited for since: since birth! And with all his Wizard wisdom. By my looks, he won’t be blinded. Do you think the Wizard is dumb? Or, like Munchkins, so small-minded? No!
He’ll say to me, “I see who you truly are – A girl on whom I can rely!” And that’s how we’ll begin
The Wizard and I. Once I’m with the Wizard. My whole life will change ‘Cause once you’re with the Wizard. No one thinks you’re strange! No father is not proud of you. No sister acts ashamed. And all of Oz has to love you. When by the Wizard you’re acclaimed. And this gift – or this curse
I have inside. Maybe at last, I’ll know why. When we are hand in hand. The Wizard and I!” 

Often Autistics go through life trying to suppress quirks or feel like (at times) we have been cursed because we are so different, but to be celebrated? That is always a beautiful shock to us! When we are filled with hope that someone likes us FOR our differences – that’s amazing.

AUTISM INTERVIEW #97 PART 1: KMARIE ON THE BENEFITS OF KNOWING YOURSELF June 4, 2019Interviewsautistic identity, identity, Kmarie, music This is the first part in a two-part interview with Kmarie @ learnfromautistics.com

I participated in a two part interview at https://learnfromautistics.com/blog/ Please check out Jenna's site as it is an excellent resource! I LOVED the interview process with her, she also edited all my words, which took the pressure off my executive functioning issues! Thanks Jenna for all the hard work you do on behalf of Autistic people and for asking me to participate.

AutIstic INTERVIEW #97 PART 1: KMARIE ON THE BENEFITS OF KNOWING YOURSELF

June 4, 2019Interviewsautistic identity, identity, Kmarie, music

This is the first part in a two-part interview with Kmarie. Kmarie is an autistic wife, mother, and blogger from Canada. She is is drawn to music and often uses song lyrics to express her emotions. Her beautifully written blog details a variety of different life experiences, including (but not limited to) living with Asperger’s, INFJ personality, low ferritin, and chronic illness. This week Kmarie discussed her relationship with music, the importance of self knowledge, and her struggles with executive functioning and language.

On your About Page, you write, “I believe when we know ourselves first, we make the world a better place.” Can you expand on this?

Baruch Spinoza (one of my favourite Philosophers) wrote, “The more clearly you understand yourself and your emotions the more you become a lover of what is.” If we can not understand why we choose different ethics, emotions or responses, then it is tougher for us to understand people who are different from us. I feel, when we love what IS our life- whom we ARE, we are able to activate change because our foundation, grounded in a sense of secure self to a degree, is built. When we know our motivations and why, I think that it is easier to be compassionate about the way others are. Thus making the world a better place. When we are at peace with our own understanding of where we stand, how we are, and whom we wish to become, we add that strong, solid stance to the human collective. Perhaps it’s a bit of a Stoic mentality, but when our self is in check, understood, and balanced, we are less prone to violent rage, ignorance, and trampling of other’s basic human rights.

How do we go about “knowing” ourselves? How have you learned more about yourself? In what ways do you continue learning?

Wow, this is a big question that will have a big answer and I will still feel I am leaving things out…Feel free to skim.

There are many mediums to learn about self. Cognitive therapy, conversation, film, art, music, reading…but specifically, I feel that in-depth knowing of self can often jump off in Personality Typing. The issue with Typology is that often people answer questions with how they wish they were or how they mistakenly perceive themselves and thus get the wrong result. A wrong result is worse than no result. I often tell people they will know it is right when they read their overview and think, “How did this person crawl into my mind?” MBTI tests like Personality Hacker or 16Personalities are excellent starters. I am an INFJ. In the past, I mis-tested as an INFP, which, after reading the description, I realized I am most definitely not. INFJ described my life. The Enneagram  is another layer of self, but again, the testing is tricky. I am a 4 with a 5 wing.

There is a certain sense of “Becoming” or “Knowing” when I read a book or a test result that resonates in frequency with my soul. When I found out I had Autism/ Aspergers…that was another piece of ME. But honestly, knowing yourself DOES come with some struggles. Each time I find a new aspect of myself that resonates as true, I go through a mini identity crisis of  “Oh wow I am like that? That is something I now need to work at embracing or growing in my life.” 

At first, it can be hard work…learning about personal strengths and weaknesses. Sometimes even if it feels true, it may not be wished to be true…and it requires some soul growth. I cried about my Enneagram Fourwhen I read Beatrice Chestnut ‘s book, but then I read the “Sacred Enneagram,” and even though some of my core beliefs may sightly differ, that book put my four back into some perspective… and then I found a blog by an actual Enneagram 4 that dispelled the multiple myths from writers trying to understand but not actually Fours themselves. That cleared everything up for me. I still enjoy Beatrice Chestnut’s ideas, but I take them with a self aware grain of salt. Now I am proud to be a four. But that is because I had that guidance from another actual Four type. 

It is the same concept with a “professional” versus an “actual Autistic” voice. Both have value, but choose the actual Autistic voice first and foremost. It’s why it is so important that we tell our stories…even if we think they don’t matter or no one is listening. When we tell our stories, it enables others to tell theirs. But after the hard work of an initial new knowing of self, a new layer of understanding is born, and that is often when life tends to get better. Or at least, I become better within the normalities of every day living…

Oh, I am a self growth junkie. I kind of “life coach” people in my spare time so I am constantly on the lookout for new paths of knowing and learning. Currently I am reading “The Goddesses in Every Woman” and “God’s in Everyman” based on Jung Typology rooted in Greek Archetype Myths. I was blown away when I found out I was an Aphrodite and wrote a post on that. My pre-judgments going into that were challenged. I often feed my learning through regular reading of Philosophy, Psychology, Educational, and Sociology themed books. Right now I am reading, “Life through the Lens of Unschooling” by Pam Laricchia and finding myself in many of the pages. I also just finished an Alan Watts book. We are conducting a book study in our home. We also host “Called to Question Gatherings” to which we invite people who are passionate about topics to educate listeners and discuss in an openly peaceful forum of differing beliefs. We have had a lot of professors, educators, and laymen speak about topics that interest them. I firmly believe we learn more from people who are excited about their own stories.

I am constantly on the lookout for viewpoints opposite of my own to challenge any stagnant thinking I have. For instance, I heard about Jordan Peterson and his controversial book. Initially I was very against him, but after watching numerous You Tube videos of his discussions, I finally began to understand his story and where he was coming from. I read his book…I was annoyed at some parts, and disagreed with some, but I also came away with a belief that for SOME people- his book will make them better people…and for THAT specific audience- his voice matters too. Even if it is not something I would fully support, I at least respected the way he holds himself in an argument. If I feel I am becoming too conservative, I read more liberal people…and if I feel I am becoming too liberal (which is more my natural tendency), I re balance by reading a respected conservative. I always try to make sure my sources at least share a value of trying to make the world a better place or some sort of ethical platform. While I am a rebel in my own way, I am also a rule follower, so I try to find people who have that balance. I try to have a ratio of books that would be in agreement with whom I am, but also that require me to do outside the box thinking. As Baruch Spinoza writes, “No matter how thinly you slice it, there will always be two sides.”

You recently wrote a blog post about increasing executive functioning and language difficulties you experience. How does this impact your relationship/interactions with your husband and children? Are there ways they can support you during these times?

It has been hard. It is taking me longer to process. Normally I am a rapid processor. I can read a book easily in a sitting, but it’s been taking me a bit more time lately. Getting my thoughts out in real life, as opposed to writing on a page, has always been more challenging, but now, to my horror, it is translating to paper/typing too. I admit I have been in panic mode lately, and I am trying to use the time I do have with more accuracy to advocate for myself, with my children and husband. Plus, I want them to have the skill set to navigate deterioration or different paths of communicating when/if it happens to them. So the times I am more cognizant, I have been reading them posts of others this has happened to, I try to explain, I try to give them an understanding of the brain, nutrients, what is possible to control and what is not… But then there are the moments when I have no words and I get frustrated easily. Honestly, I am still learning to navigate this with them. Most of this year I have felt like a massive failure.

I home school my children, so I do need a certain level of communication to keep them up in their studies. Our facilitator just came and was happy with their progress, but I couldn’t shake the failure pit of despair in my gut. Deep down I know though that I am resilient and loved…and we can work with whatever life throws at us with enough hutzpah. Basically I am stubborn in believing in my worth and contributions overall because it has been a life long fight of mine.

They have naturally helped me by giving me words. Luckily, I am so in tune with my husband and children, they often know what I want without me saying much. Over a decade with chronic illness with spurts of pain so bad I cannot speak has given us practice in this situation. My daughter knows with my facial expressions generally what I want. We have an almost made-up language of gestures, expressions and grunts etc. She brilliantly figured out that often when I am in “the zone” and they try everything to get my attention and I just can’t give it, all she has to do is gently stroke her finger down my cheek or stroke my hair and immediately I pay attention. My husband never figured that out…he always tries to talk louder or suddenly sits beside me or uses shock effect, and that won’t get my attention. I may startle, but I won’t be focused. I appreciate my daughter figuring that out. I thought I hated most forms of unexpected touch, but I appreciate when she does that.

My husband luckily has the best sense of humour. He is also generally a natural care taker. So when I mess up my words, he does often laugh, but it doesn’t bother me because it is in an enjoyment way…he loves my interesting speech slurs, word and phrase mix ups, and the way I speak. But he is pained for me if it is getting in the way of my life. I now often look to him in a conversation, and he knows he is supposed to jump in to supply the words I need to make my point. He never takes over though if I am struggling through, but I wish to continue. He generally has worked out cues with me to know when I want support and when I do not.

I really struggle if I am in a flow state and get interrupted. Often my words won’t come back and I can become frustrated for the rest of the day. My family is learning not to interrupt when I am in a monologue. 

I have never been able to express some of my emotions without typing or writing…so when I am mad at my husband, he knows by the songs I play. He also tends to know my mood by the music I choose. Music is a massive form of communication in our home. Often, even though it is important to me, I forget to use it. So they all work as a team to make sure I have access to music or remind me that I haven’t listened to any in awhile. It’s like drinking water. Yesterday I became so dizzy and nauseous to the point of curling up in a ball for an hour. My youngest came in and said, “Mom I don’t think I saw you take one sip of water since you woke up.” I thought about it, and he was right! I was swiftly brought two cups of water and half an hour later, I was fine. My family views music as important as water in another way. It is communication, so accessibility to it and reminders for it are part of our day.

You often use song lyrics and music to communicate your feelings. Describe your relationship with music. Have you always been drawn to music?

Music is my life. I don’t feel I could fully function or feel fully human without music. As a little child, I would grab the microphone and sing 80’s rock and roll at the top of my lungs. 70’s and 80’s rock is still what I need if I require an energy burst of happiness. In the crucial moments of my life, the right song has come along to describe my journey. I also can’t seem to cry often unless I have a song to trigger me when I need to. I have to go to songs for those moments like Celine Dion’s “Fly.” I have a song for everything basically. Before iTunes and the Internet, I would know songs from every genre and educate my friends in all of them. I constantly made mix tapes and then burned CDs to express my friendship to people. I communicated my care, and I still send song lyrics via text to my friends. I also love introducing people to new songs. Lyrics are first and foremost my way of speaking. Even in my ordinary day to day speech, those who know many songs will hear lyrics sprinkled throughout. 

I can’t listen to classical much. I find music without lyrics really stressful. It’s fine if it’s background for a movie, but not playing on the speakers. My husband loves classical, and I will tolerate it for awhile before I put on headphones or beg him to put on ANYTHING else with lyrics. Every genre fills a need for me. I am also seasonal in my music needs. For some reason I crave country in the Spring or when I want to celebrate simplicity. I love Jazz and Easy Listening leading up to Christmas. Rock ‘n’ Roll, Broadway, Pop, Metal, Show tunes, Opera, Punk, Indie etc…it all has its place. I like everything except for Screamo and most Classical. Although I am grateful to Classical for getting us to where we are today and there are MANY beautiful pieces. I just need lyrics to ground me.  

Music is part of my soul. I would literally be lost without it. I have a soundtrack playing inside my head for every moment. It expresses a part of me I can’t seem to access otherwise. That’s why the show ‘Glee’ was and is still important to me. Most people don’t get that. I still watch later episodes of Glee when I’m on the treadmill or if I’m having a tough time or if I need to express something. Glee combined all of my interests and obsessions; film, music, movie, artists, self growth, friendship and connection. It did so in a way that was both irreverent and satirical to all subjects and paradoxically respectful and acknowledging. But first and foremost, it expressed the inner energy I have inside. In it I found my voice once again.

 When I first found out about my Asperger‘s diagnosis, I was also introduced to the Broadway musical Wicked. Broadway and film have been huge aspects of my life almost as much as music. As a child I would longingly wish to escape into the 1940’s films. Singing in the Rain, etc. When I found out I was Autistic, the role of Elphaba in Wicked really made me feel less alone. I would play ‘Defying Gravity’ in tears over and over again. My husband knows every lyric due to my continuing obsession and repetitive listening. It helped me navigate the two years I was still finding myself within my diagnosis.

KMarie often selects song lyrics at the end of her posts. Below are her choices for this interview:

This link is by Kodi Lee who is blind and autistic and just won the golden buzzer on America’s Got Talent. His relationship with music and his mom had me sobbing. The way he uses music as his life – I can relate.

Also Me by Taylor Swift because each Autistic person deserves to feel that “I’m the only one of me – and baby that’s the fun of me.”

Early Verbal "Precocious" Speech In Autism/Executive Functioning Fails in Language and Writing/ And Mutism

My executive functioning mishaps have been happening more often. It's sad for me because writing is the place I can often express myself best, but this last year, I have been unable to recall the words I want, even if the words are on the tip of my tongue. It is aggravating. I also can't seem to edit like I used to. It has always taken me a few reads after posting to catch most of the grammar and spelling mistakes...and punctuation and sentence structure will NEVER be my forte. I enjoy speaking in sentence fragments for some reason. Lately, I have been more appalled at mistakes I see when reading previous posts. I fix what I can.

I will always have weird sentence structure because in real life conversations, I also speak oddly. My husband says I sound like the tower of Babel. He says my multiple forays into differing accents (it's definitely not purposeful) and the curious ways I structure my sentences (often backwards) are always amusing.  It wasn't until season 2 of Shitt's Creek, when someone pointed out the Moria blended a bunch of accents together, that I realized her accent wasn't a typical accent. I talked like her and thought it was normal. I actually have to correct backwards sentences in most of my posts. And I still have them because it is my natural way of speaking. I put the subject matter in the opposite form that most do. I also learned most of my language by reading when I was young. I was self taught in many ways. I was an early speaker with full, adult sentences before the milestone ages. I sounded like an adult and often was treated older than I was. Which sometimes served me well but also caused issues with expectations. I was thought to be capable thus I had to find my own ways to work around my real struggles/ disabilities. This is often another sign of Autism which gets overlooked. See HERE for more. I still love to hear the sound of certain words, I love people who use challenging or "university level words" in books, and I can sometimes sound like I hail from another century altogether with my word usage.

When asked to describe how I talk, my husband replied, "Your voice is like a Siren and your speech drives me to irrational thoughts." The theory sounded sweet but I didn't understand what he was talking about so he finally clarified, "It's just so unique. I get to experience so many ways of Being through you and oddly they are all true. Your odd accents make you almost sound multi lingual. You have your own language. For instance when you tried to say 'Library' today you instead said 'Lib- rarey.' " This may be amusing to my husband but it's getting slightly scary for me. I've always had Autistic voice tics and different pronunciation or odd sentence structure...but having words sound different from what I think I am saying, while knowing what they should sound like often shocks me as much as it does my listeners. My memory recall for words I want is failing. I'm learning to laugh along with everyone else but when I am trying to get a thought out...well, let's just say I'm starting to sympathize deeply with Dementia and Alzheimer's patients. I will be staring at a glass, knowing I KNOW it's name, but instead I have to say, "Please pass me that vessel that holds water." It makes me sound even crazier but I try not to bring much attention to the fact that I am not getting my words out properly. As I did most of my life as an Autistic, for better or worse, I try to normalize. To pretend enough to get by or not draw too much attention.

So why do I write? This is my process. I encourage those not interested or frustrated to just skip it or skim it. There are years or posts that I practice concise, shorter writing. But other years or posts are about my process. Which is long, speedy, and already cut in HALF by the time it gets to the page. That's just who I am. Other Aspies have also blogged about this issue. We have so many internal thoughts rolling around, that we need an outlet. Often our outlets are writing or monologuing. Both of which we have received flack from the outside world on more than one occasion. I have never claimed to be a "professional writer." I am a writer, for myself because I engage in writing. I also then hope it can help someone who maybe had similar experiences. However, I am aware of my readers, thus at times I will go out of my way to edit a post in half, or in hindsight go back and make cuts and edits when I have more energy. In the end, this space is a healthy spot for me, to get out thoughts or words that I do not often have a forum for otherwise. Detailed writing provides an outlet for my mind. To have lost much of my writing ability this year has been quite the journey. I remind myself there are seasons to life. Some come back around. Some do not.

I understand accessibility and editing to the best that is possible. I do it in the ways that I feel I can. I have limited energy. Writing a long blog post often surprisingly restores my energy. However, I am finding it hard now to catch my mistakes. This communication derailment happened to my friend Cynthia (in this link.) Cynthia was WAY more articulate and professional than I could ever be- even at her lower communicative points. She taught me a lot. Currently, her lifestyle, stepping out of the blog and into the sensory living aspect of being, working with her hands in her garden ect, is teaching me that it is possible to still have forms of communication, even if my language does deteriorate. I am grateful to learn from her experiences. It makes me wonder if it is an experience that can happen more often to Autistics? Or hormones and phases? Or Autoimmune conditions?

I suppose this is my form of an apology and explanation for those who have caught it or those who want to keep reading. Right now, I still write for me and for those who have told me they needed to hear my words or that enjoy the odd ways I connect aspects of life ... Quirky and all that...

Currently I am reading with my family, "The Healthy Brain" by Aileen Burford - Mason. I am hoping that the diet, vitamin protocol, and suggestions can aid me on a path back to recollection, word formation, and sharper cognitive ability. But if it doesn't, as I have learned in other aspects of life, I am still worthy, I will still contribute to the world, I can still grow and become in new ways, and pursue love until my time is up. And if I can- you can too in most areas of life. Your struggles may be tougher or lesser but they all matter. There is a fine line walked between acceptance of what is and fighting for growth and what could be. In all areas of life we have the chance to become MORE but to also accept our own BEING. It's that line between laziness and too much doing. Between giving up and holding on too tightly. Between being too conservative and being too liberal. The line we all face between dark and light...and often I do best in the gray where some prefer not to go...or in fact judge and deem unworthy.

For those who have followed my journey you know that I recently broke up with my former best friend. (Posts found HERE and HERE.) I feel this ties in to this post because recently we bumped into each other at the Dentist's. I knew we would, because I had a warning dream the night before, thus I was prepared. It was easy actually. We fell into comfortable chatter immediately. It felt like home in many ways. I thought at one point, "Oh I have missed hearing her voice. Maybe we could occasionally hang out and it would work easily enough." But then, walking away later, I was immensely happy that we quit while we were still wishing each other well. I realized that girl I wondered about a few weeks ago...ME without her...well, she is a better person than I ever realized. I am liking the new version of me. I am freer. I have more energy, more of an ability to give, I am tapping into parts of myself that I squelched a bit on behalf of her...or forgot about. I am also able to give more time to my husband. He describes me as a lighter being. However, I still credit her with many beautiful contributions to my life, I can still see us being occasional friends in the future or a morphed version of what we were, but I CAN NOT see us ever going back to what we were before. Nor do I wish to.

We still talk to each other with the same excitement and respect. I do believe we really love each other. We are just not meant to journey with each other the way we were before. I read a quote that says, "You gotta be mature enough to understand that you have some toxic traits too. It's not always the other person." I can't speak for her, but I know that recognizing my own part and role in our separation made it a lot easier.  Plus, I am an INFJ whose personality gets memes like this one below:

I know I care and cared (past tense) but my care no longer is what it was. Some aspects of life change forever, some become more or less, and some circle back around. But I don't have to convince myself that I don't care anymore. In many ways I don't care. I don't care to know what she is doing, or her thoughts on everything or what she thinks of me anymore. But I DO care that she is alive and that I loved her and still do in a different way. 

It has been another lesson to me that changes that we often fear, can sometimes be surprisingly good. I feared losing her for years. I thought I would feel panicky often, sad even more so, and alone and unsupported. For the most part, I actually feel the opposite. Not because she was bad...but because we were already on a path to deconstruction and we were enabling each other in many ways. But I couldn't have known any of that until we were both brave enough to face our own paths and truths. That is also why she was one of my better halves for many years...because she also knew when to walk away and choose boundaries, be seasonal, or when to quit, stop, and choose alternative paths. We both understood that life is not linear. Which also makes us good partners in breaking up too. As I walked away I was on a high. I was relieved our first outing was easy and amiable. I was happy that I am who I am now without her but also partially BECAUSE of her. I was grateful. I liked that I no longer owed her my opinions, thoughts, my giving, my loyalty or any sort of self giving I used to give. While I owed her kindness, gratefulness and the love I truly have within, I did not need to go beyond. I was free and so was she.

The lesson is not lost on me. If I loose my articulation while living, life will find another way for communication and connection. I can not fear what is not fully mine to hold on to. Or what may not come to pass or has a lot of time left until it does. I may as well enjoy and be grateful for what is left. Yet, at the same time, while it is still in my life, it is not bad to fight to hold on to it either. Or to fight for alternative ways of being or overcoming or going around, under, sideways or beyond. Whatever... Life may also bring beautiful changes when we let go of what is already beautiful but needs to morph. A caterpillar is intriguing and so is a butterfly. Both are wonderful ways of being in the world. I would assume the caterpillar as a butterfly probably valued both phases…or maybe not, but often, what we fear as a step down, sometimes is exactly what brings unexpected gifts…even if no one else sees it but ourselves. Sometimes we need to be almost forced out of what we see as bliss, to discover more potential, beauty or connection. Or to see those who are truly in our lives for the long haul in a different way…or to find new people to enhance our lives and to enhance theirs as well?

MUTISM:

Sometimes, Autistics who are verbally competent become mute. It doesn't happen to me often but sometimes, if the stresses add up, I stop talking. Once my youngest asked if he would have to learn sign language. I smiled and shook my head but could not explain in words. My daughter was strangely in tune with my non vocal language. She knew everything I was communicating through out the day and kept the house running, stuck to my side even though she was also fighting a cold. My middle child kept saying phrases like, "I don't get it...you can talk but you just choose not to or you will never talk again? What exactly is going on?" It was cute but even then I had no words. They were gone. Poofed out of my brain. So my daughter placated with, "No no she will talk again. Sometimes this happens...don't you remember? But not often and not usually this long. She will be fine. Besides she is talking...just not with words." Seriously, how did I get so lucky with my kids?

For months previous to this incident, I had my hands full dealing with various grieving individuals, a chemical induced Jekyll and Hyde, rage on innocents, and barely keeping my health and family together. Allow me to state, that between these stressful times we had a healthy quota of beautiful, lovely, and wonderful moments. It wasn't all bad. But I WAS juggling and it was only a matter of time before I broke. It was coming for over a year. I tend to break over smaller things when I do break. 

I was watching the way the light played off of my perfume bottles. For over an hour. An empty screen sitting in front of me. I couldn't type, listen to music or do ANYTHING. For a moment I wondered what was wrong with me. Why couldn't I seem to speak? What nonsense was this? Many friends kept checking in and I could not speak to any of them. My autistic friend asked what she could do, and in a moment of clarity I realized what was happening. Autistics can be prone to mutism at times. It's called shutdown. I was in shutdown mode. So I asked her to write me up a paragraph I could give to others and she came back with this:

"Sometimes when autistic people experience a large amount of stress, they experience shutdowns. Shutdowns are stress responses resulting from a severely overloaded nervous system. Shutdowns often result in unresponsiveness, sluggishness, and inability to speak and use words. It often also causes intense sleepiness. This is because the brain is trying to "reboot" itself after having too much to deal with. Trying to pressure an autistic person to speak or respond when they feel incapable of doing so only increases the stress on the brain. Typically, the best response is giving them space and letting them recover in a dark room."

I realized I have had shutdown before. Usually due to illness or sensory overload. My husband knows when I am really sick because I fall absolutely silent. I also get smaller versions of it when too many people are in my life or at group functions. Even too many people texting or phoning. I won't answer or I will keep it to smiling faces emojis because I can not handle a lot of people and voices. But there have been a few moments in life when stressful circumstances also brought on shutdown. My miscarriage was one. When I started to recover from that loss I listened to Daniel Powder "Bad Day" song on repeat over and over and over again while driving around with my toddlers in the back seat because that was all I could do in recovery mode.

https://crabbycentaur.wordpress.com/2015/03/06/shutdown-what-it-is-and-what-it-isnt/
As the author puts in the link above shutdown IS resilience ( I will highlight a few parts of her post below):

"What Shutdown IS NOT:
*A sign that I have had an easy life... my shutdowns do not make me ‘sheltered’a sign that I need to learn more ‘techniques’ or ‘cant handle stress’– a suggestion I often find quite offensive as I am one of the most skilled people I know at using the tools, techniques and resources at my disposal. My life is stressful not because I ‘can’t handle it’ but because I was born with a sensitive system into an period of history and location where sensory and social input are extremely noisy and demanding. I am probably better at handling stress than most people without my neurology, because I do it every single day to a very high standard.

*Post-traumatic dissociation – this happens to me too, but is different in quality (is often accompanied by self-harming thoughts, and is more of a panic-stricken freeze than an exhausted shut down) a sign that I am autistic, and that life is sometimes just overwhelming and difficult for me.

What Shutdown IS:
When I shutdown, this is my brain enforcing a break, catching me up, giving me time out, or whatever. It also signals that I might need help from others. a coping technique in itself. If I didn’t shut down my body would continue being hyper-stimulated and the results would not be good.

*It is a natural coping technique...

*A sign that I am connected to my body enough to know that enough is enough... especially when I am able to predict a shutdown coming on before it has hit by taking notice of the bodily signs (this is a skill I am building and means I am more often able to get into a safe place — but it doesn’t stop it actually happening)." (taken from HERE.)

I loved the point about Autistics handling stress better than most. I am an expert at stress. It may not seem like it, but because of my neurology I deal with high levels, even IN my home, on a daily basis. Thus, I am fairly resilient. In fact, my closest friends and family know that when I break- I fully crack, but that my repairs begin the moment the break has happened. In other words, I bounce back. I find my stride quite fast even when devastated. I am stubborn and hard shelled. I am also sensitive with a gooey centre. Both at once. It’s quite frustrating when someone undermines my coping strategies or wisdom, assuming I do not have the coping skills that I have worked my butt off to have in my arsenal. ha ha. Anyway, life is still life. WE are the sum of our parts and choices. Some we ask for, some we naturally can't shake. I am Autistic which is both beauty and struggle. Thus, I WILL shutdown for the sanity of my mind on occasion.

I finally spoke late that evening. My husband smiled and said, "Ah my love I missed the sound of your voice." I think I scared him a bit. But, the shutdown mutism episode enabled my brain to heal from months of abuse. It wasn't about the truck. Being a victim when I was already a victim of chemical induced rage from someone else out of the blue and then having a stranger sweep in on the scene to make me a victim again, triggered the shutdown. It wasn't a choice. It was how my brain deals. I easily moved on after that and of course it helped to have our tools recovered a few hours later. By "easily moved on" I mean that I realized I can lose it all but still be ME. I gained a bit of perspective. I made a plan I could handle. I tracked down needed supports. A day later I wondered what song was going to get me through this time...and suddenly the lyrics started running through my mind, "Ain't nothing gonna break my stride, nobody gonna slow me down. Oh no. I got to keep on movin' "

I will break. I have broken. It's untrue that nothing will break my stride...but my hope is that I will eventually keep on moving until the day I move onward past life itself.

Being Autistic has taught me more about finding alternative ways to many aspects of living. Adaptation. Acceptance. Change. Cognitive therapy has taught me stoicism even though a large part of me is the opposite way. Paradoxes. Holding two opposing beliefs within and being authentically true to both. Spirituality. Enjoyment. Suffering... All these have been brought home to me with Autism as well is Chronic Illness. So perhaps this is a new stage or maybe it will pass quickly and be a memory? (Well if I get those back...ha ha.) And if not, well, I lived, I used this forum to my best ability, and I still became. So thank you for ignoring the parts that are flawed, embracing them or enjoying in spite of them, if you are here to read. I felt I needed to express that with a heartfelt thanks.

 "I'm celebrating this life I've been given from now on...It feels good don't it? Livin' your life in this quick moment, and you never, ever think it's gonna go away, but I swear one day you'll wake up and say yea I go things to do, Yea I got mountains to move...Come on and sing- It feels so good to be alive."- Megan Trainor lyrics

Song Choice: Good to be Alive- Megan Trainor



Don't Speak- No Doubt