Reframing autism and more

Stylized graphic of a flower made of question marks with a red center on top of a growing black plant vine

Who knows?

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. 😉

G’nite,

Jandroid v. 3.14159265

 

 

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9 Responses to Reframing autism and more

  1. Ti Bends says:

    Wow! What a read. And yes I did visit to read about EDS, lol. In my many detours on the journey to diagnosis I also dabbled in personality typing and discovered I was an INFJ – the rarest type apparently. Intuition and empathy are high for this type 🙂

    Here’s a couple of links ( and yes I did both to cross reference results!!)
    http://www.humanmetrics.com/cgi-win/jtypes2.asp
    https://www.16personalities.com/free-personality-test

    Whoever we are, I like your message. The world and everyone in it would be in a better place if accepting that everyone is different instead of labelling difference as a negative was the norm.

    Ti x

    • Jandroid says:

      Thank you- I was worried how this post would go over, but am glad to see it’s resonating with someone out there. And… not surprised you are an INFJ! Many in the online EDS support groups have shared that they are too… uhm, gee, sensing a theme I trust? 😉

      I’m sure a lot of us also self-identify as “HSPs”, a la Elaine Aron’s great work here:

      http://hsperson.com

      Though I blew past her chart years ago, by which I mean, while I was only a 15 out of 20 in my youth, I am now “25/20” so to speak. I’m willing to bet she’s just capturing the milder end of the “spectrum”.

      Thanks for sharing.

      • Ti Bends says:

        Thank you for the Elaine Aron reminder. I bought The Highly Sensitive Person back in 2000 at a time when I was seeking to understand myself better ( haha still seeking!) …it resonated with me because I grew up hearing ” You’re just too sensitive” as though it was a character defect.

        • Jandroid says:

          Ah, that could be my epitaph, lol – “you’re too sensitive”, sigh. Yup, story of my life. So nice to have company finally!

  2. Rose says:

    Perfect! It’s fascinating how similar yet different our paths are. Thanks for sharing what’s so difficult to express

    • Jandroid says:

      Thank you! I’m glad it resonated with you. It was tricky to write, knowing how very left-brained so many of us are (scientific, analytical, “geeky” if you will). But even I couldn’t deny all the sort of “weird” semi-esoteric experiences I’d had ever since childhood, despite growing up playing with a Tesla coil. (Calling to mind the phrase: “Slowly I turned…step by step…inch by inch…,” smile.)

      Pretty sure we’re all just one giant “Clan Dumpty”, you know, of Humpty fame, right? Hopefully we’ll start learning how to heal ourselves in the absence of King’s horses and men… meanwhile, just nice to know I’m not alone. 😉

  3. Bridgett says:

    I am autistic, but it can be a disability without it needing a cure. I have always needed extra daily life help, though academically I did amazing and was an art savant in infancy. I am definitely not left brained dominant. I am artistic amd love the esoteric, I am very spiritual amd so on. I am probably about equal in logic. I have had psychic experiences but I also rely on science to get by in society. I am also an INFJ and too sensitive to cope with most life expectations.

    I have EDS Hypermobility type, severe gut problems but the specialized diets don’t help that I have noticed. It isn’t really figured out yet. I might end up staying permanently gluten and dairy free and so forth, but for now I try to include a lot of organic food and I require meat or my fainting increases.

    I also have Temporal Lobe Epilepsy amd epilepsy is way more common in autistics. I have a ton of illnesses, some treated and I am seemingly over a few, but still many of the ones I had and still have are found in a lot of people with weak immune systems and I hear about more frequently in EDS patients or autistics.

    Autism runs definitely on my mom’s side as does the EDS. I think my dad’s brother was autistic because he was mistreated in an abusive fashion for childhood schizophrenia. He also had epilepsy. Lots of mental illness and quirkiness runs on that side, but I really don’t know if autism runs on that side because other things overshadow it, physical ilness, mental disturbances usually displayed in a flamboyant fashion, and addictions.

    I just turned 34, for reference.

    I will say more clearly, I do find my spirituality tied to all my experiences, including physical. I don’t see anything wrong with that amd I am willing to entertain the oddest of ideas for myself if I think it assists me in understanding myself , functioning, and I can combine that side of me with necessary standard logic. I am not geeky — I was just always seen as a weirdo or mistaken for having intellectual issues or even belonging in an institution… For what reasons I don’t understand.

    • Jandroid says:

      Thank you for sharing your story and experience Bridgett, it’s enlightening. And sort of validates my observations. BTW, my elderly aunty has epilepsy, had to miss a year of school in her youth for it, but got better with meds. That was back in the 1930’s mind you. (She’s 92.) Not autistic as far as I can tell, but my whole family has mild subclinical signs of being autistic “cousins” IMHO the more I study. (Myself included.)

      I’m glad you’ve embraced both parts of yourself: your logical brain and your artistic creative and spiritual side. I’m not sure how much or what all is driving autism, but the Awaken to Autism summit seemed to indicate that the non-verbals often weren’t fully integrated into their bodies energetically speaking fwiw. But they all did better once parents stopped trying to pound the square pegs into round holes, and just let the kids lead. That’s how The Horse Boy film came about. His son led him to a horse, and boom: history.

      Anyway, I’m glad to start having this conversation. I don’t know why we’re all so reluctant to discuss our spiritual sides. I care less what religion someone is, we all want and need love at a minimum right? And we all could be more accepting of each other, which may be what the lesson is with autistic kids: increasing acceptance.

      Again, not saying keeping people suffering – we can defo work to overcome deficits and improve quality of life, but then, embrace all our quirky differences. Our society as a whole will benefit I think once we stop judging so much. I’m trying for my part anyway.

      Again, thanks for sharing. PS Have you seen Remrov? Their drawings blow my mind! (I can’t draw my way out of a paper bag, smile, but I can knit up a storm.) Here: http://www.remrovsartwork.com/

  4. Jandroid says:

    I really like how these guys express it here:

    http://www.thearcdearborn.org/credo-for-support/

    Pasted from the link above:

    Credo for Support
    Do not see my disability as a problem. Recognize that my disability is an attribute.
    Do not see my disability as a deficit. It is you who see me as deviant and helpless.
    Do not try to fix me because I am not broken. Support me. I can make my contribution to the community in my way.
    Do not see me as your client. I am your fellow citizen. See me as your neighbor. Remember, none of us can be self-sufficient.
    Do not try to modify my behavior. Be still and listen. What you define as inappropriate may be my attempt to communicate with you in the only way I can.
    Do not try to change me, you have no right. Help me learn what I want to know.
    Do not hide your uncertainty behind “professional” distance. Be a person who listens and does not take my struggle away from me by trying to make it all better.
    Do not use theories and strategies on me. Be with me. And when we struggle with each other, let me give that rise to self-reflection.
    Do not try to control me. I have a right to my power as a person. What you call non-compliance or manipulation may actually be the only way I can exert control over my life.
    Do not teach me to be obedient, submissive, and polite. I need to feel entitled to say no if I am to protect myself.
    Do not be charitable to me. The last thing the world needs is another Jerry Lewis. Be my ally against those who exploit me for their own gratification.
    Do not try to be my friend. I deserve more then that. Get to know me. We may become friends.
    Do not help me even if it does make you feel good. Ask me if I need your help. Let me show you how to better assist me.
    Do not admire me. A desire to live a full life does not warrant adoration. Respect me for respect presumes equity.
    Do not tell, correct and lead. Listen, support and follow.
    Do not work on me. Work with me.

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