The worst of times – when I get to be at my #autistic best

total eclipseSo far, so good. This visit is rigorous, to be sure. But it’s turning out to be a really good visit. I’m grateful for that.

My parents are continuing on with their lives in the midst of the medical uncertainties. They’re just moving a little more slowly and they’re a bit distracted. No kidding. Who wouldn’t be, when the doctors are talking about the possibility of cancer, bone transplants, paralysis, etc. But they’re holding forth, abiding by their routine. We’re waiting for toxicology to get back about the biopsy they took on Wednesday. Early next week the results will come back, is what they’re saying.

That’s no excuse to deviate from the usual template of daily life.

I am very much my parents’ child.

I’m having some really good times with my Dad, though not for the best reasons. We’re looking at his MRI in my 3D Viewer, getting a better look at the mass in his back (it’s impressive, and nobody can believe he’s walking around and living his life, as he is), making sure he’s set up in the medical portal, so he can communicate with his doctor, and just talking through the options.

At times like this, I really am at my best. I can see all sides, I can’t help but think logically about things, I can weigh the pros and cons with a balanced view, and I can help him navigate the technical considerations. I can also talk to his best friend (who is a physician) about the situation, which is a help. And ironically, all the difficulties I have with doctors have taught me a few things about how to approach them, so one of my greatest weaknesses becomes one of my biggest strengths here.

I’m keeping steady with my morning routine – get up and exercise for the first half hour of the day. I don’t have my exercise bike here, but I can dance around and get my blood pumping. My Mom has dumbbells, too, which I can use for my light weight training. I just had my cereal and coffee, and I just took my vitamins. Now, I’ll eat my banana and hang out with my Mom, who just came downstairs.

Oh, funny thing — My Mom has been reading an article about autism in “Yes” magazine — about how we Auties and Aspies have been misdiagnosed and misunderstood for so long. It’s very much a recap of Steve Silberman’s book Neurotribes, and it’s a bit surreal to be discussing autism with my Mom, who is extremely spectrum-y but does not equate her behavior and difficulties with any neurodivergence, whatsoever.

On the one hand, she talks about how her sister is probably on the spectrum because she’s stubborn and socially inept… which is like the sky calling the sea blue. And not an hour later, she’s digging in her heels, resisting my suggestions at the grocery store, and commenting on the groceries that the lady in front her is buying at the check-out. Her sister is much more heavily impacted than my Mom is, so that probably obscures her own perception of herself. Plus, there’s so much pain and frustration buried deep in her experiences (raised by two very severe Aspies who had a hyper-religious austerity about them that really took a toll)… I’m sure it’s difficult for her to give much thought to all the painful aspects of her life that have been a direct result of being on the spectrum.

The thing is, too, there are so, so many really spectrum-y folks in this area, everybody blends right in. Roy Richard Grinker talks about autism as being a cultural construct, and to some extent, I agree. The differences which set autistic / Aspergers people apart from the neurotypical population are considered more pathological, the more divergent they are from the norms. But in a place like this, were everybody is — OMG — so spectrum-y, autism means something completely different. And the differences of the Aspie-fied population are really elevated and glorified, as a sign that they are “separate and apart” from “the world”.

So, in this context, being autistic is actually more neurotypical than in the mainstream. The tables are turned and it’s the mainstream that’s the freakish strain that needs to be overcome and reduced, mitigated and nullified by about the most autistic kinds of behavior and priorities you could ask for.

Seriously, it’s fascinating. And I wish that every autistic / Aspergers person who longs to be part of an autistic community, could spend a year in this place. First off, it would make them feel a lot less freakish. Second of all, it would stop them from longing for a world run by autistic folks. ‘Cause believe you me, it is NO easy task to get by in this world of rigid black-and-white thinking, where routine Rules All, you have to be on constant alert against the hyposensitive Aspies, who love to BE VERY, VERY LOUD AND OUTGOING AND SENSORY-SEEKING, and the only real option you have for keeping your hypersensitive self sane, is to completely ignore the constant onslaught(s) and just keep soldiering on, doing what needs to be done, because that’s what’s done.

Tamp it down and suck it up. Your reward will come in heaven.

Anyway, all in all, this is turning out to be a helpful trip. I’m able to contribute, I’m able to help my parents in important ways, and so far, I haven’t melted down. That will probably come when I get back home. We’ll see.

I just really want to do all I can, while I’m here. Help wherever possible, do the hard work of being steady and present, while also keeping my own safety in mind. I’m a heck of a lot tougher than I tend to think I am.

We all are.

So, keep on keepin’  on. And things will get handled.

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6 thoughts on “The worst of times – when I get to be at my #autistic best

  1. Excellent post! Hope your father’s situation isn’t too serious.

    You hit the nail on the head with your acknowledgement of how calm and logical you can be in times of crisis. I’ve experienced this also with family members being shocked/amazed that I don’t fall to pieces/meltdown etc.

    I really feel that our ability to ” see” all sides of such situations and concentrate on ” dealing’ with circumstances rather than being overwhelmed.I’ve surprised myself on many occasion, was brought up to have little faith in my abilities and emotional control.

    The most staggering situation was when I was dx with cancer. Instead of falling apart, even in a stunned state of disbelief/shock, my focus was on ” dealing” with cancer. Would I go through surgery and horrendous treatment regimes if the prognosis wasn’t all that good?

    Little did I know that the extent of my cancer could only be ascertained via surgery…I had to undergo a nuclear medicine scan to see if it had speed throughout my body… waiting for the results was hell. Fortunately it hadn’t spread to other areas but the biopsy done after radical surgery wasn’t favourable.

    My response was to keep researching about my cancer and modifying diet etc in accordance with my condition, only following scientific orthomolecular research done by scientists connected to an Oncology unit in Montreal Canada. I loaned what I considered to be the most beneficial and scientific books to my Oncologist and we had follow up discussions. i actually wonder if my Onc is also an Aspie as he is really different to most… we actually are on the same/similar wave length in outlook on life etc. So glad I was placed under his care.

    The remaining members of my family, partner and friends were amazed and actually recognised my strengths …. unbelievable to them in their prior estimation of my capabilities.

    There are many autistics in my family but most don’t identify in fact they are in denial.

    It is great you have found a place that is very spectrum-y, so rare to fall into a familiar mentality/planet.

    I share my home environment with, a likely autistic/aspie, who is hyposensitive…. so bloody noisy bashing things, chomping continually on crunchy foods … a compulsive eater when sitting down. I am very hypersensitive to sound, touch, visuals and movement/spatial environments.

    Two sides of the same coin…. X 2

    Daily life and difficulties in coping emotionally with situations v calm, logical problem solving in crises.

    Sensory sensitivities….. extremes … hypersensitive or hyposensitive.

    Hoping your father ‘s treatment isn’t too drastic and wishing you and your family strength in the coming months etc.

    Liked by 2 people

    1. VisualVox

      Thank you for sharing! This is great info! If you don’t mind, could you share the name of the Oncology unit in Montreal? My dad hasn’t gotten a diagnosis, yet, but they are thinking it may be cancer. So, he is looking high and low for alternatives to invasive surgery. His hospital actually does cutting-edge immunotherapy, so that may be an option for him, but his primary physician at this point is a surgeon, so… you know where that doc’s head will be.

      The spectrum-y place has its advantages, especially with regard to stimming and non-standard behaviors. People in my family don’t make a lot of eye contact, and they don’t hassle me for not looking them in the eyes ALL THE TIME.

      On the other hand, spectrum-y folks can be extremely rigid and black-and-white, which can be a problem when you’re looking at different paths to take. There is a lot of pressure to fall in line with the group’s perspective – which is very geared towards getting ready to die, when you get to a certain age, rather than living long and well.

      There’s only so much I can do to combat that rigid thinking, and I worry that my parents will succumb to the pressures. They may. Or not. It’s really up to my dad. I hope he chooses well, instead of falling in line with the standard-issue thinking. He’s a contrarian, so I hope that will help him.

      But of course, none of this is certain. And we’re waiting till later this week for the biopsy results. We shall see…

      Thanks again for sharing. I’d love to know more about your sources, as I have a history of cancer in several generations of my family, and I’d like to get ahead of this, if at all possible.

      Liked by 2 people

      1. One author of ” Foods that Fight Cancer” is Richard Beliveau, a leading authority in cancer research he is prof. in chemistry and Biochemistry Dept. and director Molecular Medicine Laboratory of UQAM… Sainte -Justine Hospital Research Centre( Centre de canceprologie Charles -Bruneau).
        Apologies for not using accents … not readily available to me at present.

        Other author is Denis Gingras , researcher in Molecular Medicine Lab of UQAM saints-justine Hospital Research Centre and University of Quebec at Montreal.
        I have the Australian produced edition ( Allen & Unwin 2006) For Canadian publisher see Editions du Trecarre, 2005… Outremont , Qc, Canada ( 7 , chemic Bates, Outremont, H2V 4V7)

        Other books I found useful were ” anticancer… a new of life” by Dr. David Servan- Schreiber.. ( psychiatrist & neuroscientist.. co -founder of Centre for Integrative Medicine at University of Pittsburgh Medical Centre. He addresses cancer via his own personal experience of overcoming it personally as both doctor and patient. ( Scribe publisher)

        Both books present accounts of easy the individual can have some control of their own experience , both see complementary means as exactly that… to complement the conventional treatments.

        My Oncologist is in Australia … i am very pleased with him and also with my surgeon. My Onc is extremely committed to patients and frequently addresses the Federal Government Senate promoting the need to make various chemotherapy drugs available … many are prohibitively expensive… it wouldn’t be unlikely if he is also on the spectrum… he is an exceptional person… highly developed empathy and is wholeheartedly altruistic.

        Another book that may be helpful is ” Relieving Cancer pain & Suffering’ .. The Complete Guide by Richard Platt , M.D. and Susan S Lang. Oxford University Press

        Hope this is helpful Anna.

        Living to be alive and using that life to promote autism awareness and contribute to change.

        Liked by 2 people

      2. VisualVox

        Ah, thanks very much for all the great info! I really appreciate it.

        Just a side note: my name is not actually Anna. I just shared a post from a blogger named Anna in the past, so that showed up on my blog 🙂

        Thanks, though, for the personal touch! 🙂

        And thanks again for the info!

        Liked by 1 person

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