I know, you came here originally to learn about a connective tissue disorder called Ehlers-Danlos Syndrome. I originally came here to write about a connective tissue disorder called Ehlers-Danlos Syndrome after experiencing a massive onset “cascade” or storm of symptoms that got me diagnosed finally at 45 in 2012.
But like Alice down the rabbit hole encountering the fickle Cheshire cat and Queen of Hearts and even the Jabberwock, I quickly encountered several other major comorbidities, including the nebulous, hard to define and even tougher to qualify condition we currently call autism.
Not autism spectrum disorder, or disorders anymore. But just… autism.
Because thanks to the recent Awaken to Autism Summit (as I’m writing this originally November 15th, 2016, or “A to A” for short) and some other input from “out there” and daily Reiki, I am realizing we need to stop thinking of it as a disorder or disease, and start recognizing it for the package of gifts it embodies. Just very well disguised to our western allopathic pathologizing eyes as a “disorder”. My own eyes included, formerly. (I’ve pulled my original post on autism and EDS now for this reason, so don’t go looking for it.)
Along with all of the so-called “mental illness” we are striving so hard to cure with modern pharmaceuticals. How about we start calling these conditions “mental differences” and leave it at that, without all the judgment and stigma inherent in the terms “illness” or “disorder”? I’m increasingly convinced that all who experience them are on a healing path, possibly even a shamanic journey and have a lot to teach and offer us, if we would just listen. I think this is why we see so many troubled artists and musicians – that is what begets the art, which is oft times the only way they might express themselves.
No matter how hard we try -and I’m seeing some noble efforts on social media including Twitter (The Buddy Project, more), anything including the term “illness” or “disorder” in it is by definition going to trigger a negative connotation to it, no matter how loving the intended audience, or speaker. (Doctors, parents.)
The A to A Summit opened my eyes to the incredible gifts and spirits of the adults and children with autism arriving daily. And not just some of them – all of them. Including or even especially non-verbal ones like The Horse Boy and Joao Carlos Carlin. Or medical mediums like Anthony William.
Sure, not all of you may have found your child’s gifts yet (or even your own), or balanced their environments and spirits enough to stop head-banging enough to even enjoy a calm after noon much less feel “gifted”. But I’m willing to bet we’ll find something there if we look. Even in the most “difficult” individuals. And I don’t just mean developmentally so. I mean, emotionally so.
I.e, our borderline patients, who often play victim to gain attention more than necessary, or bipolar patients who struggle to self-regulate their moods, up or down. They are not broken. Just imbalanced, in multiple ways that can be re-balanced with proper attention to diet and lifestyle and their true selves. I.e, finding the diet that supports your body best, not just the most convenient or desired. (Yes, this is hard if your child only wants white foods, e.g. or you only have access to processed foods due to budget or other constraints – my heart goes out to you. Try any way you can to improve your nutrition or your child’s.)
And being in touch with your inner self, finding what you really want, not just codependently giving yourself away to any and everyone who asks. (Been there, done that.)
And there is increasing evidence that most of what ails us called “depression” can be eliminated through detoxing our homes and bodies and improving our nutrition in a bioindividual way as described by Trudy Scott and Kelly Brogan MD.
And I am willing to bet every one of them (us) has some sort of artistic or creative or other gift to share with the world if we would just let them. I have yet to meet one single EDS or other patient with either an outright diagnosis or signs of various so-called mental illnesses or disorders (as of 2016) who doesn’t have some kind of amazing creative gift or message to share if they can get it out. Truly. You all are the single most creative and talented bunch I know. Just not always well focused alas.
Don’t misunderstand, we still want to alleviate suffering. Working to heal and treat the body is still key to our well-being and will go far to help do so. But may not be the whole picture. At the risk of alienating a few of my audience I now think we’re just missing part of the driver for it, something we still rarely speak of: our spirits.
I say this as a Reiki Seichim Level III practitioner of 3 years now who has had her own mild psychic experiences, one hell of an intuition all these years (it’s always been right, always!) and a deep sense that I’m here for a reason besides clocking in 9 to 5 or beating computers into submission on a schedule. (My former living.) Along with my own artistic vision and intellectual talents. (A semi-photographic memory and highly pattern-seeking and seeing brain, though I know I don’t hold a candle to many of you even still.)
The more Reiki I’ve done (I treat myself daily in the morning for 20-60 minutes), the more amazing insights I’ve received, including the above. The more Reiki I do, the more answers I get and resources I line up – almost without trying. It’s like someone’s helping me with all of my challenges and chores every day, and I’m finding solutions to all of my “problems” one by one. I’m also about to achieve my 50th birthday wish: making my last Lofstrand crutch disappear. Almost. I’m so close I can taste it.
I can’t quite walk free hand fully yet. (I fail on hills and stairs yet.) But I’m this > < close! (So exciting! I feel like a giant overgrown toddler, lol!) But, even more importantly, I’m also totally at peace with my new life post disabling onset “storm” of 2012.
And I’ve seen numerous posts in all of the groups through the years about people having semi or fully psychic experiences, or “sensing” things, and everyone complains of being “too sensitive” or empathic. (And how.) Many are self-described “Indigo Children” and upon looking into it, I had to admit I feel like one too – just older than most. (I thought I was too old until one of my sources nixed that, saying we started “coming in” in the last century, so it’s apparently still possible.)
I’m decidedly not “New Age” except for practicing Reiki, but I feel myself ever so slowly turning toward that world, and am increasingly convinced we all have a really rich inner world that drives a lot of what we enjoy or not. Why this goes with our broken bodies, I’ll never know. Are we all “old souls” who can “take it” perhaps? All shamans? I have no idea – yet. But I’m starting to form one, the more I observe.
I know, the more pedantic and pedagogic among you will be hopping up and down since not only do I not have scientific studies to back this purely anecdotal observation, but… it’s about something bordering on the esoteric. And we left-brainers tend to eschew the esoteric – until it bites us in the bum! Which I think is starting to happen to me. My Reiki is not only slowly healing my body, but helping me to “see” so much more and connect so many dots.
And here’s the thing – while some of you will outright fully reject what I’m saying, I do believe a majority of you may quietly nod secretly to yourselves about your own “esoteric” experiences with psychic phenomena and life as an empath. With SPD. And OCD. And ADD. Yes, one heck of a package! 🙂
Bottom line: autism etc is perhaps not to be “cured” so much as supported. We are not broken, but “twice exceptional” as someone smarter than me wisely described us. And if the experiences of the A to A presenters are to be believed (and I do believe them, I got chills watching), once we start to listen and follow each other, and stop trying to force everyone into the same learning (and medical billing) boxes, we’ll all do better.
That’s not to say that the most afflicted among us don’t need plenty of medical help and support. But it’s not the same as saying “cured” outright. As in, not being you. (And yes, I’m alluding to the totally non-verbal, sometimes violent children some get to support.) My heart does go out to the parents having to deal with this.
But I’d like to start promoting autism acceptance as this site does so elegantly and eloquently, not just awareness, which implies a problem and pathology. And stop trying to “prevent” it entirely, as I think that may be a futile task as I think it may be our evolutionary response to our current environment which we cannot quickly change. Perhaps we have just too many years of accumulated stress being passed down in our epi-genetics?
And needless to say, with all the nutritional imbalances and deficiencies we find from underlying connective tissue trouble, we’re likely in for a lot more such varied neurology and biology. Yes, especially in the so-called “First world”. It is precisely our disconnection from nature and original foods that I think is helping to drive this. (I may be wildly wrong, who knows, your guess is as good as mine, since that’s all we can still do: guess.)
Just eat real food, folks! According to your sensitivities of course. No more boxed and instant microwave meals, however convenient. Trust me, I spend a bulk of my time in the kitchen now, which is why I’m not writing more, I’m too busy cooking and cleaning for myself, but it’s working.
My hair and nails have never grown better or longer (heck, they’re actually growing for once!) And my tendons and ligaments are every so slowly holding me together better and better (whence my walking dream coming true). And my pain is half of my 2012 levels, which is to say – way more bearable most of the time.
Does everyone with EDS or Hypermobility Spectrum Disorder have some form of autism? Hard to say, but I’ve observed one heck of a high comorbidity rate unscientifically in all my large support groups on and off line. (Are you a Hidden Aspie? I feel like one.) And vice versa, except that the autism world is still so highly focused on behavior, they’re not connecting the physical ailment dots and seeing the hypermobility yet. (This site just caught on recently thankfully.) All I can say is, the Autism Intensive Summit last year sounded a lot like they were describing EDS and MCAD patients to me. And everything that worked for them worked for me in my recovery. But that could just be one happy coincidence.
But so did this latest Awaken to Autism Summit. (Sound like EDS and MCAD patients to me.) Consider me awake. I think I get it finally. I think this is our wake up call to clean up our lives and our environments in all ways – physically, and emotionally. (Notice higher levels of illness and suffering of all kinds in adults with higher ACE scores.) Toss in the RCCX Theory (okay, it’s still technically a hypothesis, we get it, Oh hair-splitter!) and epi-genetics, and this “package” just doesn’t surprise me any more.
Behold, the new normal. Zebras appear to be inheriting the earth. Better start calling us horses. 😉
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