Sunday, December 21, 2014

Musings On Solstice And Autism (yea I am weirdly tying them in together)

I prefer to think of Winter Solstice as Mid Winter up here in Canada...and not the beginning of Winter as it is said to be. Starting tomorrow days get a little brighter, and Christmas with it's sparkles and joy (on good years anyway) is just a few days away. If one suffers from SAD, this tends to be the time, that hope is seen around the corner. Weather is regional anyway, so I do not judge my weather by the supposed "official" seasonal times of the year. However, I do love Solstice. If we were to have had another girl, Solstice would have been her middle name. Despite how hippie that sounds, it brings meaning... Meaning of beginnings, of beautiful endings, darkness and light, and of the rhythm and flow of life.

Yesterday, I was having a dreary day so I decided to make something of it. I mustered up the strength to fill the house with the smell of cinnamon and baking. At first it wasn't too fun but eventually my mind was triggered and a feeling of safe, childhood feelings was evoked. I cleaned the house to innocent Christmas songs of peace and helping the world at large. The Christmas tree was glimmering and I forced myself to sit in front of it, inhale deep breaths of the spiced air, and stare at the lights the way I used to when I was little. After a few minutes, my forced reverie turned into a natural state of wonder. For a fleeting moment I had to remind myself I was not wasting time, but only for a fleeting moment, because my practical side does not often win when my childlike joy of beauty is in competition (probably because I tend to live in my practical logical way of Being more- but that childlike wonder is STRONG when it does show up.) I don't know how long I savoured this moment, it felt like forever and also like an instant...a very good sign that I just WAS, and in BEING I AM.  The lights shimmered and my soul sighed. Yes, there are bad events, life will bring my own share to my door and has in the past, but there is also the good. The good of simply forcing yourself to BE in a moment, and in BEING suddenly you ARE. Any Solstice reminds me of this. We do not mark them with huge events, but we make sure to have a form of light purposefully set (a fire, candles, the fireplace) and to take some time to BE in whatever state we ARE.

I felt my child self at five, sitting in wonder, care free to the worries of the world, and enjoying the fact that I could stare at a tree for hours and not be told that I was wasting my time. Peace is for everyone, if only for an instant. Crimson is in the embers, bells are tinkling, and the snow outside is melting ( a refreshing change from our LONG blustery winter last year.)

I have two sides to myself...most Autistic people would describe themselves as a Paradox. Part of my brain is logical, practical, reasonable, assessing and in tune with continual new is open to constant evolution. It's the side that is often shown to myself on a daily basis but is hidden when I am uncomfortable or not accepted. I can come across quite ditzy when my brain is actually a phenomenon. A metaphor for those who do not understand would be similar to Sheldon on the Big Bang Theory (except a lot more complicated and less straightforward.) Half of my brain really relates to Sheldon. But the other side of my brain is mystical, childlike, overwhelmed with sensory data, the source of my clumsiness and inability to feed myself, and the place that causes me to automatically clap and squeal when I am filled with joy. I could not stop this part of myself if I wanted to. Perhaps it comes out a little less in the daily but it shocks me how often it shows up in  unsuspecting moments. It's the reason why I still cry at the song "Where are you Christmas?" or why I look forward to the Muppet Family Christmas EVERY year. It's the part of my brain that forces my logical side to step aside for a moment and to STOP assessing, stop reasoning, and for heaven sake stop criticizing every philosophy or thought or perspective from each angle and just ENJOY. While I do believe there are certain gifts that come from being able to step outside boxes, think from another person's perspective (even the craziest person or the seemingly most mundane) or critiquing philosophy or religion, sometimes it can get a tad exhausting. There are times when I find it wearing to be the one who has to rise yet again to put myself in the other's place to extend grace, and find that they can not replicate back in quite the same way. There are times when it is slightly jading to be able to say in my mind, "I have already been through that transition that you at 60 are going through and it happened to me at fourteen." It may sound pompous but it's just a fact, a fact that leaves one a little more alone if not in the company of those who share this brain state, and a little bit misplaced. It's also disheartening because it can not be shared or stated unless in the company of others who KNOW because people just take it as attitude, judgement or haughtiness. Most do not see this as genuine. They also get  confused by the juxtaposing paradox. Who could really be truly like that? It seems to conflicting, but I know it to be my truth. There are perks to having a paradoxical way of being and some of them are quite enlightening.

My point is, that my childlike side that also can seem to the world like the "worst" part of Autism can actually be quite a gift. Sure, being subject to sensory overload can be painful at times, but it also opens my eyes and triggers my brain to the state of a child. Like the Solstice, there is dark before light, and there is a transition time. There is a moment when all that is needed is a shift. Yes, being clumsy from executive functioning issues has it's downsides, but it also forces me to stay humble...willing to take help where most 31 year old women do not need help. Not knowing left from right or not being able to wade through verbal instructions forces me to compensate creatively to get through the daily. It's not all sparkles and Christmas lights, but it has it's moments or CAN if I choose to see life that way. This is where hope comes in. Hope is found where BEING is. Hope is found in ACCEPTANCE and LOVE. It is found in the darkest of places where light is needed. Hope is an ending needed for another beginning.

This is where Solstice hits my heart. It's a reminder brought in by the earth that I am enough, I am what I am, and there is beauty and brutality in BEING. Life is here now and I must rise to that.

Wishing you the beauty of sacred beginnings and necessary endings on this Winter's night with you.

Disclaimer: I am not literally saying Autistics have divided brains NOR am I actually explaining the scientific theories behind Autism but I am describing SOME of the general consensus among my Autistic friends and I about how being in our brain feels...and the general feelings I have about myself and how it feels to me in simple terms.

This song is my Winter Solstice song and evokes all the emotion beautifully in it's imaginative, descriptive and romantic lyrics:

*To see more thoughts on Autism/ Aspieness click on the Autism/Asperger's label below...there are posts on  Creating Autistic Safe HavensAspie motherhoodFeeling Younger While Getting Older, The Consequences of Growing an Aspie up to realityGender Bias in PsychologyFamous People speculated to Have AutismHurtful Misconceptions about VaccinationsWhat Autism Means to MeGuest Post from Samantha Croft on Aspie Communication, Disclosing AutismAutism Positivity/ Autistic Healers FlashblogSensory Autism experiences at the ZooAutism DOES NOT cause ViolenceDealing with and Understanding Meltdowns Autistics Don't Need Your Awareness and Other Crucial Links Doesn't Everyone Have a Little Autism in them? (And other Wounding Statements Addressed)

Tuesday, October 21, 2014

A Letter to My Younger Self from My Thirty plus Year old Self- Ten things I am Grateful For

My friend Glynis wrote a poetic version of this here:

I am borrowing her idea but am doing it slightly different because I do not feel poetic today. I am going to do this in the form of writing to myself to infuse hope into my younger child self.

Dear Self;
By age 30 you will have seen at least 14 different specialists in your life, from anxiety to bowel to reproductive organs to gull bladder specialists to stomach specialists. You will have gone through degrading medical tests and horrible moments with other people. You will have often wondered what the purpose of your oddity, your unique body and brain, and your counter cultural perspectives are? You will have lost hope for most of your twenties even though they were some of the best family years of your life, giving birth and learning. Yours is a story still unfolding. There will still be pain and loss, but there is a lie out there that says life goes downhill after 18. Ages 3-6, 12- 14 and 20 to 27 were the toughest for you. During these times there was fear, there were lies that you believed regarding health, beauty and what matters...and even though you had the inclinations all along it was hard to believe it when the proof seemed to be all around. I am writing this letter to you, dear self today, to show you ten things that IMPROVED as you aged or changed your life for the better.
Love Older Self

*The following will be written in first person to make things easier.*

1.) My Youth IMPROVED. I spent my twenties resenting my age. Resenting everyone underestimating my old soul or our little family...and now I realize it's a gift. I feel younger at thirty than I did at twenty one. This is not a joke. When I first turned thirty I felt WAY older. My body went through some weird adjustments in a matter of months. I could no longer stay up past eleven without feeling it! But other things? They improved! Youth is a blessing but it's not an age. I learned to embrace the parts of it I have- whether it is a youthful outlook or a youthful body! Last month I walked into the Specialist/Doctors office and he remarked, "What are you doing in my office? You should be out roller blading." This stunned me into awkward laughter, but I thought about it a lot after, and every time I feel old or tired I think, "People think I look young and vibrant enough to roller blade!" Even if roller blading would kill me! ( It probably would grievously injure my dyspraxic, klutzy self but the concept is exhilarating...and helps me get out of bed in the morning!:)

2.) My uniquely wired brain. Sometimes it's also my curse, but on most days- I am so honoured to have a Neurodiverse paradox that guides my life. Finding out I was an Aspie or am on the Autism Scale was one of the TOP ten things that positively changed me forever. It was also hard at some points, but I found out where I BELONGED. I always felt like I was from another planet, another time period, another family, and another species. My secret wish was to find out time travel really existed so I could find the time and place I TRULY belonged in. I knew who I was living...wasn't ME. I had to hide this particular pain and mask to fit in. Everyone thought I was SO normal, but deep down I knew something was SO not typical. Even now, only my husband and kids really see the meltdowns, the profound wisdom and almost scary intuition, and the beauty that is completely me. On most days they benefit from it. But the rest of the world gets me filtered in one way or another because to most, different is scary. Or different is rebellious...which I suppose in some ways COULD be seen that way. But most of myself is better served masking because it is more depleting to try to get others to understand...even if they think they are open minded. It's not that I am not true- these fragments of myself are true, but it would be exhausting to reveal my truth to more then my little family. The other place I finally belong is with the friends made online...all the aspies, the differently wired and the "normal" stable friends who support like Sara. Finally, after many books and my son's official diagnosis, I stumbled upon Rudy Simone's Aspergirls. It changed my life. The entire book was highlighted within two hours and tears were streaming down my face- I BELONGED. I finally found my species, my friends, and my brain wiring. People who lived with similar war stories. So many factors fell into place slowly after that day. Seven years later I have found my rhetoric, reasonings, and place in this world...furthermore, despite it's disabling attributes at times, I respect and admire how my mind works. I UNDERSTAND myself more than most people do and those that truly know me are in awe of how much understanding there is. This was hard earned and I will reap the benefits the rest of my days. I have my soul home. Much of this benefit also came from Cognitive Therapy and my great therapist who fit me so well because he was also a physician. Most of my struggles of anxiety came with physical odd ways my body responded and having a therapist who knows both body and mind was the perfect fit for me. Ten years of therapy has been one of the best decisions of my life.

3.) My husband. I am glad I did not listen to all the lies that told me we were too young to marry. I  often worried,"What if they were right?" Twelve years later, they were WRONG. We almost called it quits, mostly due to listening to too many well meaning voices, but marrying young was the best thing we could do because we grew TOGETHER. As an Aspie this is HUGE. We have been through diagnosis, differing beliefs and family value changes at the same time. We helped form each other. Some days I hate everything he does but I KNOW we are soul mates. We balance each other out. One of my favourite attributes of him is that he is physically strong. I need him to be strong because I am not physically strong. I am always in admiration of his raw strength. I am dyspraxic, anemic, fibro riddled and easily injured ( due to the MTHFR -CLICK HERE gene and other factors.) He is like my Wolverine. He heals fast, has very large arm muscles/strength. He has lifted a piano by himself down one flight of stairs (NOT that I was happy or proud of him for that!) But his raw natural strength (he does not work out) is unparalleled to most men I meet and I am continually in awe of it. I love knowing if the building was burning he could carry me out. I love knowing if we were trapped he could find a way...and I love that I can call on him for anything to be moved or taken down or...and I have complete confidence that he is the best person to call. It's like being married to a super hero. This also helps with our current renos. He has his limits and right now he is depleted in minerals and salt and iron because he is working so hard, but the Naturopath is fixing him up and I am SO in awe of all he can do! From plumbing, to electrical to walls to paint. He really is my superhero. My talents lie in the brain- he often calls me his Jean Grey but his talents are VERY physical. He resents this sometimes and thinks it's somehow inferior. I am in awe of it and most days I think if I could trade gifts, I would trade him...(but I also DO love my brain.) I know it won't always be the case for him to be unusually strong and there are so many other attributes I love about him. Another one is his open mind and stubborn heart. He chose me and chose his life. Despite what some people assume, I can never choose for him- I wouldn't respect him if I could and he definitely has a mind of his own. Every day I am grateful. He infuses my life like no other and no one else will EVER come close to him.

4.) The kids who wake me up every day with hugs, cuddles and breakfast in bed. Yup, every morning I get granola mixed with greek yugort from one of my little gifts...I'm pretty spoiled. They are mostly peaceful and infuse my life with their lessons, freedom and insights. My life would not be on the path it is without them. They taught me to defy convention. My unique kids taught me to avidly search out ways to live life differently, to find the lies in culture, to find different ways of living outside the box of conformity. My kids forced me to become. I had to change beliefs on birthing, childcare, food choices, education, spirituality, mental wiring, healthcare...pretty much everything was turned on it's head and for years it felt like I was over my head but the changes came suddenly and were always for the best. The years under five were pretty hard and I don't think I would go back. I call them the dark years because I did not have the confidence to follow through on what I knew was right for us...I was just too exhausted and barely coped through the resulting PTSD and PPD...some of the depression was from not living the way we needed to but instead living the way well intentioned voices were telling us to live that did not suit who we were. Once we changed that, EVERYTHING changed for the better mostly. Of course we are perceived as selfish, odd and contrary by those who do not know us or our reasons or systems...we are pot stirrers because of the lack of convention or our ounces of mystery, but weirdly enough we belong now more even though there is no place we can actually belong to...if that makes any sense? Our children did this. My children formed, tested, broke and healed me in ways I will never be able to pay them back for. They are my heart.

5.) Being able to Unschool my kids. I am grateful I live in a country that this is possible. I am grateful that I live in a community that helps my children learn in various ways. I am grateful for our funding for the curriculum I need to purchase and learning experiences we get to take. I am so grateful that even if I live in a province that requires some schooling in the main subjects I can mostly find ways to Unschool without too much paperwork involved. I am grateful for my facilitator who works with my gifts and my children. I am reading Home Grown by Ben Hewitt -CLICK  out loud to my husband and sometimes I get so choked up because I am living the dream. It's not the way Ben Hewitt lives, but the concepts are very similar. We are living in our freedom. It's such a profound and different way of treating our children that goes counter cultural and every day I am grateful that I stumbled into finding a way that works with a combination of friends, books, hard work, supports and perhaps a bit of destiny.

6.) Health. I had the best readings at Naturopathy that I have EVER had yesterday. I only have a liver issue that could possibly be causing some stomach rashes but is easily remedied with a few homeopathic drops and our continued healthy eating (we think it was caused from the multiple dental appointments this year and amalgam not carefully removed) and I have lower levels of magnesium. Otherwise I am in good order!

 If I could go back to my younger self I would tell her, "In your 30th year you will experience the best physical health of your life. Don't believe the lies that you are at your best young...that fact depressed you because you knew you were not and you KNEW this. But there is hope. You lived too long without hope. I have now tasted it and I can tell you hope for healing can happen at ANY age. FOOD. Food is something you always struggled with because you hated it all and hurt yourself or others when you tried to make anything and thought you would never figure it out. Each step of your journey brought you closer and it can only click when it DOES. You will find your food groove and you will find people who support this food groove. Your personal small community will come through for you. You will make a few sacrifices but it will be so worth it. And going of gluten, processed foods and sugar will be one of the easiest and best things you will EVER have done. SO much so that when you look at food it will no longer be tempting. There will be an odd time where some treat will look delicious but wait a few seconds and suddenly you will smile, take a whiff of the sugary air and enjoy the smell without consumption. The concept was scarier than the doing, but this only happened because of seven people. Your grandmother, father, mother, mother/father in law, friend and your husband. They all supported this change even though it affected their lives. They came up with yummy alternatives when you joined them for meals. They baked treats that followed your bossy guidelines and they accepted that it was a life change. But your husband you owe the most to, because he was willing to do this with you and cook regular meals. You now clean up everything and help prep but you are no longer the one figuring out meals or getting injured trying to prepare them. You now are able to live within your abilities and this is HUGE. Your body will change, your health will change and you WILL have more answers."

I know I am lucky to have a supportive husband...So many women tell me that. But sometimes I wonder if they actually know what it takes to get a supportive husband? It takes communication, asking and if not respected, being strong enough to challenge him to attend counselling. It takes compromise, it takes time invested and sacrifices in other areas and most of all it take vulnerability. Supportive husbands don't just happen. Loving ones do if they are good men, but supportive ones? That is a mutual destiny that needs pursuing. I have to constantly read to my husband articles explaining my limits and finding articles that explain his. We are constantly evolving together. Almost any good hearted man can be a supportive husband if both spouses are willing to communicate, understand themselves and each other and ASK. Yes, I am lucky my husband has a sensitive heart. I am lucky he grew with me and is who he is. I can not take credit for his amazing BEING, but I can take half of the credit for how supportive he is now and he would agree with me. It took hard work to get where we are and a lot of emotional output, moments of allowing him to see me at my weakest, and allowing him to be at his weakest. So yes, my husband is a huge part of my health journey, but I can also say that determination was too. Also, having had ill health and still having a chronic physical pain condition I can say that non health also teaches and transforms. My pain has given insight. Health is not everything but when I have it, I am grateful for it. There is always hope.

7.) Answers. I am a mystic. I believe more in questions than answers and I still live my life this way HOWEVER, I am finding that it's simply not quite true that there are NO answers. There are some. They are individual perhaps but at crucial times it is ok to embrace an answer. It was a slow process, finding some answers, and most of my personal answers are just that...PERSONAL, but having some is a balm to the vulnerable, flawed human psyche. I am realizing it's ok to hold on to some answers loosely but to never put those answers on others. I can suggest the answers. I can passionately tell how they helped change me, but sometimes what works for one, will not work for  another or not be chosen, I try to learn how to let go of that. My answers have solidified choices. They will transform and evolve but right now, the answers in health, spirituality and family have indeed improved the quality of our life.

8.) My best friend, Sara. We have been friends now for almost 9.83 years ( I did the math based on my daughters years/months of living. We met when she was 18 months.) I have never had a friendship this strong with this much time spent together. She is more than a friend. She is my soul sister. Back in Junior High I remember praying for a best friend who would love me as much as I loved them. I had a lot of good friends but I knew I was the one typically loving and giving more. I begged God to send me a friend who would click with me, who would get me mostly...but I didn't realize that I had to first be that friend to myself. As I started to begin my new spiritual path after I had my second born son, who changed EVERYTHING, she walked into my life. In fact, I was instructed by another friend to reach out to her and "convert" her. At the time, most of my beliefs on that were transforming but they were definitely not at the place I am at now, so with a question in my heart, I reached out, and ended up being pulled up instead by the other soul love of my life. She turned my life around. She turned my fears around. I taught her things about movies, songs, historical events and thoughts but she taught me how to LIVE. She listened, truly listened, about all my  interests and fears. We only had an argument once. Sure, we have had moments where we needed space or disagreed but it's a weird peaceful relationship like no other I have had. It is full of respect and mutual admiration. It is equal in it's unequal ness. I loved watching Anne of Green Gables while growing up and I saw myself in Anne...I often wished for a Gilbert (and my husband is as close as one can get to the persona of Gilbert and far outshines him) and a I have my Dianna. I often joke that she is my other therapist because of all the time we spend talking through life. My husband knows that the day Sara and I became close was the day he no longer met his wife at the door after work either in tears or with a verbal onslaught of all the day held. She has brought peace. In Sanskrit Sara means Essence or Core, she really has been one of the main supports that reminds me to be my own essence, she is part of the core of my caring and even though we can be SO different in our Being, we are similar too.

9.) Home has always been elusive to me. As I said before, I have never felt like I belonged anywhere. The closest home I ever had tangibly was my teenage bedroom. It was my haven and my place to be myself but as soon as I walked out the door or another person walked in my door, I was no longer at home with myself. This has changed due to all the previous 8 points. I love Canada my country and I love my place in it.  Moreover I now love my home. We used to live in a home that was full of mold, toxicity, and poor building. We were really poor the first decade of our marriage, but during this poverty we found home within ourselves and ways of installing dignity, beauty and peace into any place. However, an opportunity presented itself in our 6th year of marriage by our boss at the time. It was a risk for all involved but we took it and found ourselves homeowners. The first four years were a struggle every month to meet the mortgage. We tried to sell or rent it out to afford it. We went to the food bank a couple times and one awful christmas we were so depressed we both bawled watching "It's a Wonderful Life" because it WAS our life. We had a few cans in our pantry and no money for groceries, bills or presents. Two nights later my parents called and gifted us with a pantry full of groceries and five hundred dollars to spend on Christmas presents. We felt as if we had been handed LIFE. Our story would not be the same without them or my grandma constantly feeding our hungry mouths. We would accept any dinner invite at that time because it meant we would be feeding our kids a balanced meal. Not many knew how desperate we sometimes were, but we made it...and the sacrifices looking back were worth it because we had so many family and friends who simply were who they were. Now we have a mortgage we can handle and a safe home that we put sweat, tears and sacrifice into. I am so glad our attempts to sell were futile but at that time I viewed it as we were cursed. Now I sigh with relief because we are exactly where we need to be. I love our home. It enables us to be who we are. It is our ultimate place of rejuvenation and belonging. It is SACRED.

10) I could not have all the previous points without my support system. Sure, most of our way we MADE ourselves. A lot of my personal choices were all on me, as it should be, however supports are crucial. Supports change as we journey. Just because I am not close friends with some who supported me before, does not mean they were not crucial or part of my infused self.There are some who contributed to our family well being in small ways and some in large. Some people contribute just by visiting at christmas, exchanging gifts or stopping by for a quick bonney fire (named after my husbands best friend). Some people foster my growth by calling my husband for an hour long chat. Others contribute their wisdom by sending articles, videos, or a few sentence email. Some people made it their mission to break us down, but in doing so they made us stronger in our boundaries and protective of our time, so in that I am also extremely grateful to them from afar. Most of our enemies have been well intentioned so I cannot even blame them for the particular choices they made even if I can choose how I will let them in. I realize that those that oppose us also help make us. We need the balance in some way. But those who are for us? They BECOME part of us.
We have been physically fed, nurtured and picked up from family and friends. We have been challenged in beliefs, argued with and put on paths we can never go back on from dear Aunts...and those moments became the best parts of us. Mostly we have been loved. I have been loved. From my mother in law, who I put myself in her perspective and can see how we must hurt sometimes simply by being ourselves, and though I can not prevent that, I can regard her with respect for how much she loves her son and grandkids and how in turn that translates to me in a way. I look at my youngest and see my husband and my heart breaks literally a bit for the future me...because I see it. Although I can't choose my choices based on this I can appreciate it and find little ways within my power to ease the pain even if our BEING means the pain will always be present. I have been loved by my parents, who took my husband as their own and he fits like he has always been in our life prior to him being there. It's weird. I have been loved by grandparents who fed us and cleaned for us when my kids were grandma taught me everything I know about laundry and she waded through piles of mouldy garments when I was too tired and too young to figure it out myself. I look back at that girl I was and wonder how she became me, and realize it was through many others. My aunts shaped my concepts of self in one way or another. My younger sister gave me an opportunity to try out aspects of parenting when I was a teen myself, she is also teaching me to transition into being a friend...which has been interesting and I still have not managed to fully transition into whatever role I am supposed to play in her life and hers in mine. In ways she is much younger, but in others much older. It depends on the circumstance. My brother has challenged me to hold on to boundaries. Others who have had crucial roles have been the witnesses, the friends who speak their meaning and by speaking their meaning help me form mine. From mom's group ladies to blog group ladies, to occasional friends for varied years...each one individually and collectively became PART of my multi layered soul in one way or form.

 I am who I am and that I Am partially, in fragments, belongs to some of them. Ultimately though, I have realized that I must be the best friend to myself that I want. I must be the change I wish to see in my life, in my beliefs, in my community and in my family and the world. In this knowledge EVERYTHING has changed. Ultimately, I can not blame anyone but myself because even if someone hurts me, I am the one who has to choose how it will effect me inwardly. I am the one who has to chose how they hurt or how much input I allow into my life from people who simply can not understand. I am the one who has to realize it is not necessarily their fault and they are a victim of their own selves and perspectives...I can only control MINE. In this I have found my sanity, my soul, my wisdom and my heart...Life is part circumstance, part what is made, and part what is found. I am grateful for it all because it all means LIFE.
*My husband and I feel this is one of our many songs. We found love right where we are.*

Tuesday, September 30, 2014

"Doesn't Everyone have a Little Autism In them?" Wounding "Well Meaning" Statements (Ableism and The Neurodiverse Movement explained.)

The problem with well meaning statements is that they come from a place of genuine care and attempts at understanding, so it is tougher to address them. Often, in person, I don't have the words to respond because people are often trying to show we are similar and can relate. It is often meant to be sweet, however, often, these statements are also condescending. Without realizing it, statements like the following trivialize specific journeys in life. I find it easier to respond in writing so the following are other ways to look at how some of these well meaning statements comes across:

1. "Doesn't Everyone Have a Little Autism In Them?"

Perhaps that is true in the sense that everyone has traits that could be translated as such, but in every other way its not true. It minimizes both the struggle and beauty of Neurodiverse traits. It's not true that everyone is a little Autistic. You either have the different brain wiring (Often on a MRI different areas light up when you experience sensory overload, however, Autism can not be proven by an MRI but the brain IS different) or you don’t. Even if there is “high” or “low” functioning it is still a similar brain wiring…which translates into purely Autistic. No matter what. In some situations a presumably high functioning Autistic could be very low and in some situations a presumably low functioning Autistic could be high in their certain fields…so it renders it simply autistic. (See THIS post by Musings of An Aspie for more.) In other mental differences, to be OCD truly, one must have both ritual and anxiety and compulsion and obsession…unless it’s OCD anxiety which is different and yes, a lot of people can have OCD anxiety without actual OCD. As for Bipolar, we do all have opposing sides and paradoxes of being deeply down or up at some stages in our life, but we can’t be a little Bipolar…you either are or are not. Again, the brain wiring is different. You can be a paradox or have similar attributes at a time but it is very different from BEING Bipolar. Are you seeing where I am going with this?
Anyone who has these ways of being may have a tough time hearing statements like the above because it hurts. It is well meaning but it minimizes the struggle and beauty of differences. It’s kind of like saying” Everyone has a little Hispanic/ African/ German in them.” or "Everyone is a little blind in their sight." Um no…Some people have 20/20 vision. We don’t give these statements with physical differences yet we do it with mental differences? These Neurodiverse traits take a lot of work to discover, find validation in, and adjust to. It is invalidating to the journey and hard work of these people to say that "everyone" also is like this. It would be rude to say this to someone who is blind or of a different race or someone who is sharing their life path of struggles and beauty, to minimize it by saying "all" of us are like that. It disregards the specific wiring, or essence of that person.

2.) "Maybe if Autistics stopped talking about their Autism/ Stopped writing articles/ Or sending me articles on how to treat them, I would just treat them normally the way they would like."

Let's get this myth out of the way first...we actually do not wanted to be treated "normally". There is a difference between being treated with understanding and dignity and being treated like every other normally wired person. We are NOT wired normally so there are exceptions to our treatment. This is true in the medical world so it is going to also be true in the social world. We DO want to be treated with the SAME respect regarding our gifts and weaknesses that normal people do but this does not translate into being treated "normally." In my experience "normally" means  being forced into experiencing some sensory torture or having others be inconsiderate about the fact that eye contact feels painful (see THIS post.) We don't need more ignorance.

Ableism and Neurodiversity (Click here for a brief explanation and roots of the Neurodiverse movement)  are relatively new words and the fight for existence and fight against Ableism is a relatively new movement. (Click HERE for a brief guide into the rhetoric of Ableism.) Like the Civil Rights Movement we need people to speak up for their own differences and need for respect. Martin Luther King was often despised for speaking out but he was crucial to the movement, along with many others who spread his name, referenced his speeches and pointed to the many injustices based on race. In the Feminist movement, words like "Patriarchy" were unheard of prior to the sixties and seventies. Now it is common knowledge and accepted into our society. Ableism is now on the forefront and it takes the people who belong to the Neurodiverse groups to spread the word. If it doesn't come from us, it is often skewed. Professionals are often well meaning but do not understand all the nuances in our brain. Since we live in our brain, we can probably explain more accurately than someone who only studies us. When we have the time to get out the words this can be effective. Usually written word is better for us, thus all the articles and references. It is easier for us to send out trusted sources or our own words and hope something sinks in than to explain it in person, which an NT would probably prefer. In person is always tougher because of distractions, grasping for words and sensory overload.

It has been found that the opposite of love is not hate but Apathy. Autistics are often met with apathy. In fact, anyone who is Nuerodiverse is often met with Apathy because our struggles in this particular culture are not seen, nor unfortunately, is most of our beauty. Ableism is often from apathy. Most people do not even know what Ableism is. I didn't until very recently. That is sad. To quote Lydia from Autistic Hoya "Our fight is less against willful hate and more against the easy ignorance cloaked in the privilege of never having to live a disabled experience -- the privilege of never being guilted and shamed into going to an event that you lost the spoons for but had requested an interpreter for beforehand -- the privilege of never having to decide days in advance whether you will go to an event or not -- the privilege of never having to wonder whether you'll be able to access the handouts, presentation slides, or speech of the presenter -- the privilege of not worrying whether other attendees' perfumed products will induce an allergic reaction, meltdown, or physical illness -- the privilege of not sitting on edge in case something triggers a seizure -- the privilege of not thinking about whether something will surprise you by triggering a panic, anxiety, or PTSD attack -- the privilege of not having to think about whether you can even get into the ... building -- the privilege of being able to go to any event you like, anywhere, with little difficulty or inconvenience except perhaps finding parking --."

3.) Phrases that are often said to Autistics that are rude but often born out of ignorance and not malice.

Ignorance is a travesty easily remedied. If you are reading this and the links then you are no longer ignorant of some of these issues, thus (hopefully) making you a more understanding, compassionate person and starting you on the path to larger minority group issues. Lydia covers this better than I could and while I may have a few different approaches to a few of her points, this post covers most of it aptly:

My point in giving these well meaning statements a second thought is not to create shame in those who have said these things. In fact, I have been guilty of a few of these phrases once upon a time. But with education and a little enlightenment we can stop saying things that wound and instead start speaking each other's language. I really believe most of these things need to come to light so we can begin to translate different experiences of this world. This is the time of the Ableist movement. All Autistics and other Nuerodiverse people are finally being able to share their OWN experiences in their OWN words. There is immense freedom in that. We are finally bringing to light all the experiences that have (with good intentions) caused immense damage.

Many people, prior to the Civil Rights movement, thought that slavery was the accepted norm. Many people were enslaved because of "good intentions" and not thinking outside the cultural box of conformity. Now most of us would never even think that way anymore, but it took many people speaking up, many people looking foolish, and many of those who were discriminated against to speak up in the midst of disdain, pain and prejudice to create change that is still happening.  

The conversation needs to change. Luckily, steps are being taken to change it- for example The Social Model of Disability (CLICK HERE for more.) We need to build each other up and start speaking each other's language. Adult Autistics often know how to speak NT (normal people) because we have to mask, conform and be considered somewhat normal just to survive. Yet, many Normal people conclude that we are asking them to understand us but we are not putting in the effort. Nothing could be further from the truth. It is time create a better conversation without inflicting as many wounds.
*Post Edit: Josie wrote, on another blog, a statement which I feels helps this post immensely: "When someone is both an advocate and a self-advocate as well as an activist for something personally affecting, the line becomes blurred. You are advocating and working for things to be different for other people but also for yourself. It might be easier for other people [see those without a disability] if individuals did not engage in self-advocacy or did not engage in activist, awareness, or inclusion education activities which revealed that they, themselves, are a part of the population often excluded...One of the more effective ways to get across awareness and education is to make others understand that these are individuals, not one dimensional poster people. But that can be troublesome. I mean that can bother another person, knowing how much their willful ignorance, their indifference, their exclusion absolutely hurts and negatively affects individual lives. " She is right. We can't stop advocating simply because we are a part of the populous group affected. Change needs to happen and we need to know that indifference hurts.

Tuesday, August 26, 2014

The Rhetoric of Ableism dating back to Aristotle, Autistics Don't need Your Awareness and Other excellent Autism Links Written By Autistics for greater Autism Understanding, Autism Advocacy, Autistic Communication and Ableist Behaviours Regarding Autism

The following are some fantastic links to explore regarding Autism, written by those who have experience in this way of Being. With each link (click and it will open in a new window to read at your leisure) I will post a brief highlight from the article. I have emailed these links to the Autism Societies around my home because I believe they are THAT informative and important.
"...We feel misunderstood because nonautistic people keep telling our stories, without asking us for our input. We feel misunderstood because nonautistic people make assumptions about what it’s like to be autistic and then present them as fact. We feel misunderstood because, like the adult in the video, people are talking to us and at us and about us but they’re not listening. I don’t need this kind of awareness. And I certainly don’t need to be tolerated. I need acceptance and I need for the voices of autistic people to be the ones speaking about autism..."

"...In my nurse world, we used to get a lot of what we then called "severe autistics" who were brought to hospital due to aggression.  They were quickly medicated, restrained, controlled.  No one stopped to ask the cause of the aggressive episode that precipitated their hospital visit, rather it was just accepted as something that happened.  It was "to be expected".  That was autism when I started my career.  Acting out, feelings of complete sensory overwhelm and overload, these don't seem foreign to me any more.  Through the tireless efforts of self advocates and the extended autism community; these behaviours now have explanations and many, including myself --- through the years, as I gained experience --- have acquired further insight.
Quite frankly, I feel a little this way after a while if I don't pace myself.  If I don't take vacation, if I don't stagger outings, if I don't employ my coping mechanisms, I end up feeling like I am covered in post-it-notes.  I become swamped by psychic and emotional clutter that is inevitably left over from an average day at the office.  Certain clothes hurt.  Sounds grate, smells gag.  I don't have autism.  But I can relate, even if only in a miniscule way.  That had to be learned.  Common ground had to be found and the rhetoric of "devoid of meaningful thought" had to be overcome.  But it did.  I did... and was completely horrified at how I had viewed my fellow humans."
She argues that "Disease, deformity, and physical features different from those of the majority were linked with evil and sin, and so it is not surprising to find these alleged imperfections attached in artistic representations to historical, legendary, and contemporary figures who were viewed as ignoble or evil."18 Mellinkoff maintains that this artistic tradition was not particular to the period on which she focuses, tracing "an amazingly consistent pattern of thought [that] has persisted in Western society, from at least as early as ancient Greece into our own time."19
Using physical deviance to render evil visible saturates the Western artistic”  
”Confronting ableism as visual, ideological, and epistemic problems does not require us to set aside efforts to change the material order of society—such as working to provide access to public spaces—but it does empower disability literature, art, slogans, and protests as crucial to the effort to change what disability means. If we locate the problem in disability, then the ableist absolves his or her responsibility for discrimination and may not even recognize its presence. If we locate the problem in ableism, then the ableist must question her or his orientation. The critic's task is to make ableism so apparent and irredeemable that one cannot practice it without incurring social castigation. This requires substantial vigilance, for ableist thinking pervades the culture. For example, as I write this, I am tempted to use medical metaphors to explain the task and script something like "we cannot simply excise the tumor of ableism and heal the culture, for it has metastasized and infiltrated every organ of society." Yet this metaphor relies on an ableist perspective that motivates with the fear of death and turns to medical solutions to repair a body in decay. Using it, I would endorse and perpetuate ableist rhetoric, just as I would by using deafness as a metaphor for obstinacy ("Marie was deaf to their pleas for bread") or blindness to convey ignorance ("George turned a blind eye to global warming"). The pervasiveness of these and similar metaphors, like the cultural ubiquity of using images of disabled bodies to inspire pity, suggest the scale of the work ahead, and the ease with which one can resort to using them warns of the need for critical evaluation of one's own rhetoric. Yet the task can be accomplished. Just as feminists have changed Western culture by naming and promoting recognition of sexism, the glass ceiling, and patriarchy—admittedly a work in progress, yet also one that can celebrate remarkable achievements—we can reform ableist culture by using rhetoric to craft awareness and political action.”

..."How can you help an advocate and a self-advocate?  First, listen to them. Their concerns are valid and ignoring them and explaining that it is not that bad or the problem does not exist does not help people.  It makes the situation worse. Second, help a self-advocate understand their rights and responsibilities.  Self-advocacy is about empowerment and the more knowledge a person has about the problem, the better prepared they are in finding a solution. Third, help with stress management.  Advocating for yourself and others can take a heavy toll on you, mentally, emotionally, and physically.  Self-advocates need support and understanding and so do advocates."
..."Many years ago, I thought that any conversation about autism was a good thing.  I thought that the  more people who knew about autism, the better and easier it would make my life and my son's life.  You see, we are both Autistic and it's not always been an easy road when faced with the ignorance and judgments of other people.  So, seeing people celebrating Autism Awareness in April seemed like a "Really Good Thing".  
I slowly came to an understanding and appreciation of the huge difference between autism "awareness" and autism acceptance.  Awareness means that the rhetoric surrounding autism is dominated by people who are NOT Autistic.   Parents, professionals, even siblings.  Acceptance means that  you don't just ask for our input but you recognize that we are going to lead the conversation. Awareness means that there is going to be a lot of misinformation.  Because the people creating "awareness" do not have the lived experience of being Autistic.  Often, they don't even consult with us when talking about us.   Acceptance means  respecting diversity, valuing our humanity and recognizing and appreciating our place in the community and as experts on the Autistic life experience..." 

..."For that to happen, autistic individuals–including autistic children–need to be allowed to communicate a broad range of messages in the ways that are natural for them. Forcing a child to make eye contact or to stop flapping is the equivalent of forcing them to speak a foreign language. It’s telling them that if they want to use behavior to communicate more than distress, they’ll have to speak another language because theirs is substandard and the people around them can’t be bothered to learn it.
“Behavior is communication” has to apply to more than just a small subset of behaviors or it’s no better than “quiet hands” masquerading as acceptance."
.."How do we do that then? How to we change thousands of years of underlying ableist metaphors?

One, we have to self-reflect, examine and then change ourselves.  How do we really feel about people with intellectual disabilities?  About our kids with developmental delays?  Do we see them as broken?  Not quite right?  Lesser?  A challenge?  (To who?  To you?) It's only going to go downhill from here? How about the other way:  are they somehow superior to your other children?  Blessed with preternatural powers?  Is that extra chromosome made of anything other than genetic material?  Do you see those with Down syndrome as anything other than an equal, than human?
Then you too need to enter rehab, my friend.  "
  • We often have atypical symptoms and atypical reactions to medications
  • We often have difficulty describing our pain, symptoms or illness in a way that doctors understand
  • Many of us have had bad experiences with the medical system because of communication barriers or the way we experience our bodies
  • Sensory sensitivities, communication barriers and bad past experiences can cause us to avoid seeking out medical care when we need it."
  • ***
..."Unfortunately, it’s not about what I want. Social interaction has a real physical cost for autistic people. If I don’t listen to the voice of caution in my head and limit my interactions, my body will eventually take over and limit them for me.
When I’m in a situation where I feel comfortable, I can handle longer interactions. If I have to deal with unstructured activities, unfamiliar places, new people, rapid shifts in conversation partners or topics, or any of a long list of other things I find challenging, I’ll hit my limit sooner. An hour might be all I can deal with before I start feeling a strong need to escape.Since being diagnosed with Asperger’s, I’m getting better at “reading” myself. The anxiety, the need to escape, the withdrawal that precedes the uncontrollable shaking–these are not things I need to be cured of. They are signs that I need to take care–yellow lights to be heeded–and I’m learning to listen to them..."
***"For me, there are some distinct differences between bipolar and ASD, the primary being that I can predict, analyze, and understand my emotional states. I am aware of how I feel, not some of the time, but all the time. I can watch myself get happy, and I can step back and analyze the direct reason, and even theorize when the happiness will end. My behavior is not unpredictable. In retrospect, after I experience what might be seen as a ‘high’ or a ‘low,’ I can always find a trigger; sometimes the trigger is as simple as something I ate or someone who showed up at my door. In addition, much of my feelings of frustration, despondence, and discouragement are directly related to my executive functioning ability: the way in which my brain organizes information or doesn’t organize information. My executive functioning challenges can result in an inability to perform simple daily tasks, such as showering, dressing, errands, phone calls, or cooking. My lack of being able to perform simple tasks will cause sadness and disappointment, feelings that can easily spiral into a form of depression—a depression with an exact cause, other than biological.
***"Pain comes in different ways, to all people. This is not autism, this is life. Seizures are bad, but they are not autism. Motor coordination is not autism either. Many people are, or will be, incontinent. This is not autism. This could be anything. Some autistics have meltdowns and there is always a reason. Outburst is not autism. Anyone can have one.How can a parent say that a child cannot have a coherent thought if the parent can’t understand the difference between communication and speech? Some people can experience the parts of autism that can be sometimes painful and uncomfortable but this is not all autism is. Finding better services and solutions for the discomfort is a good goal that we all support. Finding a cure for epilepsy is dream and a goal I support. I am Autistic. I cannot eat by myself a lot of the time. I self-advocate and I am happy." - See more at:

..."(It’s not just the association and pressure of shame, because when ever an autistic person gets autistically excited about something, there will be people there to shame and bully them, and some of us will internalize that shame and lock away our obsessions and believe the bullies and let them take away this unique, untranslatable joy and turn it into something dirty and battered.)It’s not any of that. Those are all things neurotypicals can understand and process. This goes beyond that. It’s not anything recognized on the continuum of “normal”. It’s that the experience is so rich. It’s textured, vibrant, and layered. It exudes joy. It is a hug machine for my brain. It makes my heart pump faster and my mouth twitch back into a smile every few minutes. I feel like I’m sparkling. Every inch of me is totally engaged in and powered up by the obsession. Things are clear. It is beautiful. It is perfect. I flap a lot when I think about Glee or when I finish a sudoku puzzle. I make funny little sounds. I spin. I rock. I laugh. I am happy. Being autistic, to me, means a lot of different things, but one of the best things is that I can be so happy, so enraptured about things no one else understands and so wrapped up in my own joy that, not only does it not matter that no one else shares it, but it can become contagious. This is the part about autism I can never explain. This is the part I never want to lose. Without this part autism is not worth havingNeurotypical people pity autistics. I pity neurotypicals..."

(Personal Note: I do not believe in pitying anyone. I do not like being an object of pity nor do I feel that Neurotypicals would enjoy that either...However, I DO get where the author is going, even if the word choice may not be my preference. There are some experiences I lose out on because I am Autistic and there are some experiences Nuerotypicals lose out on because they are Nuerotypical.)
..."This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.
Therefore, when parents say, I wish my child did not have autism,
what they're really saying is, I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.
Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.
Autism is not an impenetrable wall
You try to relate to your autistic child, and the child doesn't respond. He doesn't see you; you can't reach her; there's no getting through. That's the hardest thing to deal with, isn't it? The only thing is, it isn't true.
Look at it again: You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn't respond in any way you can recognize as being part of that system."
..."To the parents of Autistic children: We need you.
Sometimes in public discourse, Autistic adults and non-Autistic parents disagree over very important issues that affect each of us personally. Sometimes this disagreement is spectacularly explosive. But there is no way for the autism and Autistic communities to move forward without creating some type of group cohesiveness. Yes, that means that we will have to enter into painful dialogue and discourse, and yes, that means we will have to accept the validity and legitimacy of the ideas and feelings of people with whom we may disagree. It does not mean that we have to set aside all of our differences, because that would make us self-deceivers. But it does mean that we have an obligation to each other and to ourselves to recognize what Dr. Martin Luther King Jr. called "inescapable mutuality."
..."Hugs can feel suffocating and scary. I  may not be able to read nonverbal cues well enough to know when, or how long a hug might occur, thus making physical contact seem unpredictable.  Light touch is often aggravating.  Deep pressure may work better than light brushes. (they make my skin crawl just thinking about it) One of my sons enjoy being squished up in a blanket.  This might be a good alternative to hugs.  Trust is important and trying to force physical contact in one way to be sure I will not trust you.  Let me cue you when I am ready and be gentle.  Provoking anxiety will only make me  feel more distrustful and leery.  I can show my affection in other ways, like doing things for you to show I think of you and care.  Please, look for alternative ways I might be showing my love, like remembering to do a chore for you that you dislike, or making something for you.  Some children that are on the severe end of the spectrum like to carry around objects from the people they love most.  This can be shoes, clothes, jewelry, or other personal items that have your scent on them and remind them of you.  This is their way of being close to you."
..."Moreover, only in an ableist society, in which the values of individualism and independence are held in high esteem, could a term like “dependence” take on a negative valence. Dependence on others for help need to not be seen as infantilization, helplessness, or tragedy, but as an indication of the interdependence of all human beings and as a reflection of a basic human need for assistance and comfort. The failure of the study to investigate the implications of these types of words lessens its usefulness is terms of understanding how to change thinking about disability...."
*** (On this post I disagree with her on First Person Language. See this post for more:  But I like that she gives an exploration of how medical students view disability.)

We were told that many Autistic traits are just a sign of our “sin” and we need to “turn to God and our issues will resolve themselves." When meltdowns and temper tantrums happen and we deal with them differently than most parents do, because the tempers are usually from either sensory overload or frustration over wanting/needing to do something ect, and NOT from blatant mean spiritedness or vengeance, we are labelled as “giving into their sinful nature.” Although we can not blame someone for their stance towards sin (and it is a prevalent ideology in culture) we can distance ourselves from that input, try to advocate when we can, but then leave that door open when the person clearly is not going to try to see a different perspective. For there is only so far you can go when someone believes that relationships and in meaning. We see all as equal in differing ways, even those who have called us evil for embracing the ideas we have. We see them as no worse or better than us, but we DO see them as people who can not have influence in our life or a strong voice, and for that we distance in a respectful but healthy manner until their choices bring them to a place of compassionate being. If not, we can compassionately BE separately...and even though, from their perspective that may be hurtful or they will not understand, it is because of the construction of each reality, and the idealism and rhetoric of the story we tell ourselves, that we can not possibly enter into dialogue about life together because we are speaking two separate languages...thus there needs just kind and firm space. Our life has been so beautiful since we have implemented this goal of interaction. It’s harder, and we are probably misunderstood more as purely selfish, but we know what we are and we respect others for what they are even if we chose not to participate in their particular aspect of living in our one short life. 
If you have any thoughts or links you would like to leave, feel free to do so in the comments section.