I’m so happy to be back home, back to my normal routine, back to my regular pace and way of doing things. The sickening migraine that was dragging me down, I’m able to relax again, I am laughing for real and from my belly, instead of that stressed-out sound that escapes from my mouth when I’m around my workmates in a car driving to the office, I’m eating regularly and having the kinds of foods I want to eat, and I don’t have that nasty film of aftertaste of all-the-food-I-never-normally-eat coating the inside of my mouth.
I can rest. I can relax. I can read. I can think. I’m several orders more functional now, than I was just 24 hours ago.
The difference is striking.
And as I’m resting, ideas are coming to mind. I’m able to read the research papers I printed out, and I’m able to make sense of them. My brain is also making some excellent connections (well, they seem excellent to me, anyway), and I’m finding it possible to actually think again.
Filling in the blanks, as I go… And looking at new directions for my work and my vocation. Keeping this blog is more than a hobby. It’s actually a vocation for me — a mission I have, that ties in with my overall passion for publishing. So much money and time and research energy is spent on researching “causes and cures” for autism, it’s pretty freaky… and the organizations that try to serve us, often fall short — and also fall into the traps of person-first concepts that actually undermine their state goals, by reducing us autistic humans to sufferers of a disorder that must be dealt with to relieve the pain of all those who are made uncomfortable by our presence/existence.
So, that’s why I’m here. I’m on a mission, you could say, to put a voice to the experience of one woman on the autism spectrum. I’ve known for nearly 20 years, that I’m squarely on the spectrum. I can’t recall ever taking an assessment where I didn’t score within the range. And to those who say, “Oh, you’re just one of those online test-takers who’s using that to legitimize your claims,” Yes, the AQ test is clinically recognized for research purposes, as is the RAADS, both of which I’ve taken a number of times).
Anyway, I’m here on the spectrum, I’ve struggled terribly with things that never should have actually been a problem — and had I known what “the deal was” with me, those many years ago… and had I possessed an understanding of the core issues I was facing, as well as the nature of them… well, I’m convinced that things would have actually been very different for me. Some folks take their diagnostic info and decide that they’re doomed. Some people are just naturally inclined to put a negative spin on everything, as well as invested in believing that — whatever proverbial cards they’ve been dealt — they’re stuck with their situation, no matter what they may do to try.
I, on the other hand, have always believed that the human system is mutable and capable of change. We learn. We adapt. And we can often choose which direction we want to change and adapt towards. I think it’s a personality thing — a complex combination of nature and nurture. But it’s also a choice. Plenty of people will tell me otherwise, but I’ve seen people from very tough situations decide to make the best of it, and they have. Against all odds. The evidence I’ve seen supports my belief that at least some of what we “are stuck with” is a direct result of our choices and habits.
Okay, I’ll get off my proverbial soapbox, now.
Bottom line is, I’m able to think again! Woo hoo! W 🙂 🙂 T W 🙂 🙂 T!
And three things have occurred to me, just this morning, building on my reading from last night and this morning:
Why non-verbal children are “problematic” for their parents and society
- Becoming a new parent is stressful and disorienting. Parents are under considerable pressure, both internally and externally, to “produce proper children” who integrate into society and become productive citizens.
- Verbalizing = stress-reducing. It stimulates the vagus nerve to trigger the parasympathetic nervous system, and it also lets individuals find community and support. Verbalizing is one of the most pervasive (and required – though not always recognized) modes of stress relief, and children are expected (even required) to speak — both as a source of stress relief for the parents, and a sign that the parents are instilling in them one of the most critical communication / community building tools in the human repertoire.
- If parents don’t have any other techniques for relieving stress, they get even more stressed. They get hit from all sides — they are failing to be adequate parents with a speaking child AND they lose a critical stress-relieving tactic (speaking interactively with their child) — all adding to their stress levels.
- Prolonged stress blocks learning, creative thinking and problem-solving. It heightens and distorts the issues at hand, and put parents on the defensive — which can morph into going on the offense. Perpetual fight-flight state ensues.
- Autistic children can be highly empathic and sensitive to negative, critical emotions, and the fight-flight drama environment around them can add to their own stress levels, thus dampening their adaptation and growth.
- Downward spiral of ever-increasing stress and added difficulties for all sides.
- Possible approach: Teach alternative stress reduction techniques to parents of autistic kids, as well as autistic kids, themselves. Address the stressed-out, strung-out underlying condition to foster greater creativity, learning, adaptation for all involved.
The problem of screening out autism with other conditions
- Mental health issues and organic conditions such as brain injury or a developmental disorder can “disqualify” someone from an autism diagnosis, offering a more obvious explanation for why someone is behaving the way they are.
- This can cause significant issues, as the associated condition may actually be exacerbated by neglect of autistic issues, confounding treatment and sending an autistic person down an extended medical/clinical “boondoggle”, filled with confusion and ill-chosen pharmaceutical tactics.
- The co-occurring conditions may be heightened and the symptoms made all the more intolerable, thanks to the “intense world” of autism, and unless the issues that come with our distinct autistic neurotype are recognized, understood, and addressed, our other conditions will necessarily be further complicated, made more intense, and confront clinicians with a puzzling array of symptoms that just don’t make any sense — or seem made-up (to get attention, obtain drugs, etc.)
- If we consider that autism is a distinct neurotype, rather than a disorder, then we can account for co-occurring conditions and gain a deeper understanding of not only how autism affects us, but the other condition(s) we’re dealing with.
- By taking an inclusive, co-occurring approach that factors in the “substrate” of autism in the overall picture, we can truly appreciate the complexity and richness of the autism neurotype.
- We can also potentially gain greater insight into the intricacies of autism – learning from extreme cases which exaggerate the interplays of autism with co-occurring conditions, and better learning how to understand and handle things at a global level.
Alexithymia isn’t only a problem of not understanding our emotions
- It’s also a problem of not having adequate words to describe what we’re feeling
- Either words are too simplistic – there’s more to it than we have words to describe
- Or our feeling state is so intense and so variable, mutable, that we can’t come up with words quickly enough to describe them. At all.
- Or we don’t feel that others will actually understand us, because they’re so caught up in their own over-simplified perceptions, and they don’t realize there’s more to the story.
- We need more and better ways of describing our emotions. There are new projects underway to do this – e.g., The Dictionary of Obscure Sorrows
- We need to use old words that have fallen out of use.
- By enlarging our vocabulary and actively finding ways to put into words what it is we autistic folks are feeling (can also be through art and music), we might possibly dispel the misconception that we feel nothing, and that we can’t describe what we’re feeling because we’re internally deficient.
- Maybe, just maybe, it’s the world we live in, that’s deficient.
So, there are the three Big Ideas I had this morning, after getting back on my routine and having the chance to actually read and think about what I’ve read.
It’s amazing what can happen, when I’m simply allowed to structure my life the way I need it to be structured.
It’s magic. Pure magic.
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